November 30, 2021
It's the Season of Miracles- and I have plenty to celebrate. Since I last wrote many months ago there have been some great changes in my life. First and foremost are my scan results. I've had two scans in the last 6 months and both showed amazing results! Not only is all of my cancer stable, but it's actually decreasing! I started a new medication, Trodelvy, back in April when my clinical trial stopped working. It's a new medicine that wasn't even around a year ago. My doctor always says we just have to keep finding a treatment to work until another new treatment comes along. And so far this has worked for me. My clinical trial gave me almost two years of stable results. This was a long enough time for researchers to come up with a new medicine to switch me to. I don't have a very good track record with regular chemo- nothing has ever worked for me for more then three months. Imagine my joy then when finding out this brand new chemo is actually working on me! I consider it a miracle.
The biggest change in my life has been moving close to my oldest daughter, Kaitlin. Her sons Jack, 4 and Bennett, 2 bring a lot of joy to my life. I decided to move close to be able to spend more quality time together. I was living 50 minutes away, which made for a tiring day of driving when I would go visit. So I made the decision to move and it's been great. I see them several times a week now and shorter more frequent visits proves to be less tiring for me. Sometimes they stop in for an hour and we bake cookies and play with Grandma's toys. Though I don't like living farther from my youngest daughter, Kara, living close to the grand-kids does make me feel needed, and everyone wants to feel needed.
One of the ongoing struggles I have shared is how isolating cancer can be. Once I stopped working I ended up having more alone time then I wanted. So much alone time can be depressing. Being around my grandsons has helped lighten my mood. I still help Kara with her children's theater that she runs and that also makes me feel needed. I love working with Kara, her energy is contagious!
The other big change I've made has been where I get my treatment. When my amazing oncologist Dr. Swoboda moved to Canada last spring there really was no reason to continue driving so far for treatment. Kara suggested I find someplace closer, as getting to Rush took me over an hour from my new home. I found the Kellogg Cancer Center at Glenbrook Hospital, just a ten minute drive away. I like my new doctor and so far all the nurses have been great as well. Everyone gets a private room with a big screen tv for their treatment. It's a really nice set-up and I feel very comfortable there.
The side effects from this chemo are not so bad- mostly fatigue and sometimes being nauseous. I have good medicine that helps a lot with the side effects. This coming weekend I am going with Kara and her husband Michael to visit my son Ryan and his wife Serena in Denver. I am really looking forward to being together- a little belated Thanksgiving!
I am so grateful for the miracle medicine I am taking. I hope you can find miracles of your own this holiday season. There are so many things to be grateful for if you just look and have a positive attitude. Don't be afraid to reach out to your family and friends if you need some encouragement. Holidays can be tricky with your emotions. Cancer is also tricky! The ups and downs can be unexpected and even overwhelming at times. Being vulnerable can be rewarding. It may seem a bit scary, but the times I've done it the end result has been worth it. Until next time, Suz
It's the Season of Miracles- and I have plenty to celebrate. Since I last wrote many months ago there have been some great changes in my life. First and foremost are my scan results. I've had two scans in the last 6 months and both showed amazing results! Not only is all of my cancer stable, but it's actually decreasing! I started a new medication, Trodelvy, back in April when my clinical trial stopped working. It's a new medicine that wasn't even around a year ago. My doctor always says we just have to keep finding a treatment to work until another new treatment comes along. And so far this has worked for me. My clinical trial gave me almost two years of stable results. This was a long enough time for researchers to come up with a new medicine to switch me to. I don't have a very good track record with regular chemo- nothing has ever worked for me for more then three months. Imagine my joy then when finding out this brand new chemo is actually working on me! I consider it a miracle.
The biggest change in my life has been moving close to my oldest daughter, Kaitlin. Her sons Jack, 4 and Bennett, 2 bring a lot of joy to my life. I decided to move close to be able to spend more quality time together. I was living 50 minutes away, which made for a tiring day of driving when I would go visit. So I made the decision to move and it's been great. I see them several times a week now and shorter more frequent visits proves to be less tiring for me. Sometimes they stop in for an hour and we bake cookies and play with Grandma's toys. Though I don't like living farther from my youngest daughter, Kara, living close to the grand-kids does make me feel needed, and everyone wants to feel needed.
One of the ongoing struggles I have shared is how isolating cancer can be. Once I stopped working I ended up having more alone time then I wanted. So much alone time can be depressing. Being around my grandsons has helped lighten my mood. I still help Kara with her children's theater that she runs and that also makes me feel needed. I love working with Kara, her energy is contagious!
The other big change I've made has been where I get my treatment. When my amazing oncologist Dr. Swoboda moved to Canada last spring there really was no reason to continue driving so far for treatment. Kara suggested I find someplace closer, as getting to Rush took me over an hour from my new home. I found the Kellogg Cancer Center at Glenbrook Hospital, just a ten minute drive away. I like my new doctor and so far all the nurses have been great as well. Everyone gets a private room with a big screen tv for their treatment. It's a really nice set-up and I feel very comfortable there.
The side effects from this chemo are not so bad- mostly fatigue and sometimes being nauseous. I have good medicine that helps a lot with the side effects. This coming weekend I am going with Kara and her husband Michael to visit my son Ryan and his wife Serena in Denver. I am really looking forward to being together- a little belated Thanksgiving!
I am so grateful for the miracle medicine I am taking. I hope you can find miracles of your own this holiday season. There are so many things to be grateful for if you just look and have a positive attitude. Don't be afraid to reach out to your family and friends if you need some encouragement. Holidays can be tricky with your emotions. Cancer is also tricky! The ups and downs can be unexpected and even overwhelming at times. Being vulnerable can be rewarding. It may seem a bit scary, but the times I've done it the end result has been worth it. Until next time, Suz
April 25, 2021
Drum roll please....it has finally happened...I am an..... OUTLIER! The dictionary defines an outlier as "a person's whose achievements lie outside the range of statistical probability." In the cancer community the common definition is someone who has outlived their original diagnosis by a certain number of years. In my case I was first diagnosed with Stage 1 Breast Cancer in 2014 and was given very encouraging odds of survival at the time- I was told it was very treatable and not to worry since I caught it so early. Fast forward to 2016 when I just didn't feel right and an x-ray revealed the cancer had returned, this time in my lung and metastatic. At that point I was given anywhere from 18 months to 3 years to live. At my last doctor visit she commented that now that I have long since passed the 3 year mark she felt it was ok to tell me that when she first diagnosed me as metastatic she didn't expect me to make the three year mark. Well, look at me now. A genuine outlier. I have made it to the five year mark since my metastatic diagnosis. FIVE years!
And what have I done with those five years? Well, besides fighting cancer every week at treatment I've accomplished a lot of my goals. Most notably is seeing all three of my kids get married. Kara, my youngest, got married last May to Michael, who I love as one of my own. Ryan, my middle child, just got married April 3rd to Serena. They picked the date, 4-3-21, so that it would be clever and memorable. As if getting married during a pandemic wasn't memorable enough! Serena is the perfect addition to our family, she is as clever as she is funny and is thoughtful and bighearted. I love having her as a "bonus daughter" and hope she considers me as an extra mom.
The biggest thing to happen over the past five years has been the birth of two grandsons. Jack is now 3 1/2 and Bennett is 1 1/2. My biggest dream, or largest ask, when I was first diagnosed was to become a grandma. That is what I wanted most of all. There were so many times in the past 7 years (since my first diagnosis) that I didn't think I would make it. Not just to be a grandma, but to make it even another year. There have been some very low and scary times. The cancer roller-coaster has taken me on quite a ride. And while I know the roller-coaster ride is far from over, I also know that with every ride up there will be a ride down, followed by another ride up. And so it goes. Up and down and always moving.
What gets me through the down times is the knowledge of an up time that follows. A time I spend with my family making more and more memories. The other day Kaitlin asked Jack who his best friend is. He said Grandma. Now doesn't that just make life worthwhile? Even on a crappy day when cancer is winning, I am reminded that I am still the winner. I am living my dream of being here for my family, and that. my friends. is always a win.
April 25 is a hard day for me. It's the day my dad died (2009) and the day i was first diagnosed. I like to think that my dad is watching over me and holding me through the tough times. I feel his presence beside me. Knowing my parents are near in spirit helps me to know that when my time comes I have the most amazing parents waiting to welcome me home- into their loving arms. I'm in no hurry to get there, but it is comforting to know they are there.
So if you are struggling through something and you feel like you just can't go on, think of me and how I have already beat the odds. I have become an Outlier, against all odds. I have been knocked down a bunch of times, but I've gotten back up again. And I will continue to keep getting up as long as I can. And if I can do it, so can you. Whatever fight you are facing, make yourself be an Outlier. It's worth the struggle. Until next time, Suz
Drum roll please....it has finally happened...I am an..... OUTLIER! The dictionary defines an outlier as "a person's whose achievements lie outside the range of statistical probability." In the cancer community the common definition is someone who has outlived their original diagnosis by a certain number of years. In my case I was first diagnosed with Stage 1 Breast Cancer in 2014 and was given very encouraging odds of survival at the time- I was told it was very treatable and not to worry since I caught it so early. Fast forward to 2016 when I just didn't feel right and an x-ray revealed the cancer had returned, this time in my lung and metastatic. At that point I was given anywhere from 18 months to 3 years to live. At my last doctor visit she commented that now that I have long since passed the 3 year mark she felt it was ok to tell me that when she first diagnosed me as metastatic she didn't expect me to make the three year mark. Well, look at me now. A genuine outlier. I have made it to the five year mark since my metastatic diagnosis. FIVE years!
And what have I done with those five years? Well, besides fighting cancer every week at treatment I've accomplished a lot of my goals. Most notably is seeing all three of my kids get married. Kara, my youngest, got married last May to Michael, who I love as one of my own. Ryan, my middle child, just got married April 3rd to Serena. They picked the date, 4-3-21, so that it would be clever and memorable. As if getting married during a pandemic wasn't memorable enough! Serena is the perfect addition to our family, she is as clever as she is funny and is thoughtful and bighearted. I love having her as a "bonus daughter" and hope she considers me as an extra mom.
The biggest thing to happen over the past five years has been the birth of two grandsons. Jack is now 3 1/2 and Bennett is 1 1/2. My biggest dream, or largest ask, when I was first diagnosed was to become a grandma. That is what I wanted most of all. There were so many times in the past 7 years (since my first diagnosis) that I didn't think I would make it. Not just to be a grandma, but to make it even another year. There have been some very low and scary times. The cancer roller-coaster has taken me on quite a ride. And while I know the roller-coaster ride is far from over, I also know that with every ride up there will be a ride down, followed by another ride up. And so it goes. Up and down and always moving.
What gets me through the down times is the knowledge of an up time that follows. A time I spend with my family making more and more memories. The other day Kaitlin asked Jack who his best friend is. He said Grandma. Now doesn't that just make life worthwhile? Even on a crappy day when cancer is winning, I am reminded that I am still the winner. I am living my dream of being here for my family, and that. my friends. is always a win.
April 25 is a hard day for me. It's the day my dad died (2009) and the day i was first diagnosed. I like to think that my dad is watching over me and holding me through the tough times. I feel his presence beside me. Knowing my parents are near in spirit helps me to know that when my time comes I have the most amazing parents waiting to welcome me home- into their loving arms. I'm in no hurry to get there, but it is comforting to know they are there.
So if you are struggling through something and you feel like you just can't go on, think of me and how I have already beat the odds. I have become an Outlier, against all odds. I have been knocked down a bunch of times, but I've gotten back up again. And I will continue to keep getting up as long as I can. And if I can do it, so can you. Whatever fight you are facing, make yourself be an Outlier. It's worth the struggle. Until next time, Suz
July 3, 2020
So- it’s bad news. It’s progression. The scan showed growth in a few different places, and just like that-Snap!-my days as a Lab Rat are over. It was weird too- the doctor visit yesterday. At the end there was no fanfare, no ringing of “the bell”. For those of you that are not in the Cancer Club, when someone finishes their last day of treatment-usually radiation- they get to ring a bell-usually a big, loud one, for all to hear and to celebrate the end of treatment. I rang that bell- twice. When I was first diagnosed as Metastatic in 2016 I knew then that I would never get to ring the bell again. Never. I would always have some Cancer in me, whether it showed up on a scan or hid it’s sneaky little bastard self. I had to get used to the idea that I would never again be Cancer free. I will never be done with treatment. So it should come as no surprise that my Cancer, which has been a glorious Stable for 24 months, is now growing.
Part of me always knew it would grow again. After so many negative things that have happened during my fight with Cancer, I knew someday Cancer would regain control of my body and get the upper hand. So then why did I feel like I just got sucker punched when my doctor told me it was growing and time to switch treatments? I’ll tell you why- it’s because I had finally allowed myself to dream and to plan things for my future. A future I thought I wouldn’t have 2 years ago. But being stable for 2 years means that you start to believe in a future. Only recently have I voiced my plan to my daughter Kaitlin saying, aloud no less, “When Jack starts kindergarten in 3 years I plan to move closer to you so that I can pick him up from school everyday and he can stay at Grandma’s until you get home from work.” Yep- I dared to voice a dream. And now I feel like the rug got pulled from under me. To be honest, I felt even worse than that when my nurse Chelsea first told me. The day I had the scan Chelsea called me with the bad news a few hours later and arranged for me to see Dr. Swoboda the very next day. The rest of that day, waiting until I would see the doctor, was very hard. I tried to keep busy and push it out of my mind, but it was always there, nagging at me, creating turmoil and a storm of emotions. I was devastated.
I read something a while ago and because I related so well to it, I kept it to read over now and then. Just a short quote. “Sometimes when you’re in a dark place you think you’ve been buried, but actually you’ve been planted. -Christine Caine” That feeling resonates with me now. I feel buried. Buried by the Cancer of course, but also buried by so many thoughts that weigh me down. When I lie in bed at night and can’t fall asleep I think of dying and what that will be like. Then I start to freak out and have a small panic attack. And then it’s almost impossible to fall back asleep. So I’ll get out of bed and change my pajamas, because they are often sweaty from me panicking, and then I’ll go watch something stupid on tv. Nothing sad, because that would just push me over the edge. Watching Beaches reduces me to a puddle of tears even on a good day! Eventually I’ll get tired enough to go back to bed for two or three hours. When morning comes I try my best to just show up. Dr. Swoboda says that even getting out of bed counts as showing up. It’s ok to be sad, as long as you are able to still function and find your way out of the sadness. That’s the hard part- finding your way out.
So how do I go from feeling buried to feeling planted? I don’t have the perfect answer to that yet. I think some major praying on my part is needed. Praying for guidance. Praying to see God’s plan. For He certainly has one for me. As one of my favorite verses says; “For I know the plans I have for you” declares the Lord. “Plans to prosper you and not to harm you. Plans to give you Hope and a Future.” -Jeremiah 29:11. Certainly God is giving me a future, I just have to trust in that. In Him. For now, I will keep trying to not feel buried. I will try to work my way out from under the pile that has been placed upon me. I want to come out from under the sadness and despair. For if I am indeed planted then surely I will grow and bloom, right? What an adventure this could be! Until next time, Suz
So- it’s bad news. It’s progression. The scan showed growth in a few different places, and just like that-Snap!-my days as a Lab Rat are over. It was weird too- the doctor visit yesterday. At the end there was no fanfare, no ringing of “the bell”. For those of you that are not in the Cancer Club, when someone finishes their last day of treatment-usually radiation- they get to ring a bell-usually a big, loud one, for all to hear and to celebrate the end of treatment. I rang that bell- twice. When I was first diagnosed as Metastatic in 2016 I knew then that I would never get to ring the bell again. Never. I would always have some Cancer in me, whether it showed up on a scan or hid it’s sneaky little bastard self. I had to get used to the idea that I would never again be Cancer free. I will never be done with treatment. So it should come as no surprise that my Cancer, which has been a glorious Stable for 24 months, is now growing.
Part of me always knew it would grow again. After so many negative things that have happened during my fight with Cancer, I knew someday Cancer would regain control of my body and get the upper hand. So then why did I feel like I just got sucker punched when my doctor told me it was growing and time to switch treatments? I’ll tell you why- it’s because I had finally allowed myself to dream and to plan things for my future. A future I thought I wouldn’t have 2 years ago. But being stable for 2 years means that you start to believe in a future. Only recently have I voiced my plan to my daughter Kaitlin saying, aloud no less, “When Jack starts kindergarten in 3 years I plan to move closer to you so that I can pick him up from school everyday and he can stay at Grandma’s until you get home from work.” Yep- I dared to voice a dream. And now I feel like the rug got pulled from under me. To be honest, I felt even worse than that when my nurse Chelsea first told me. The day I had the scan Chelsea called me with the bad news a few hours later and arranged for me to see Dr. Swoboda the very next day. The rest of that day, waiting until I would see the doctor, was very hard. I tried to keep busy and push it out of my mind, but it was always there, nagging at me, creating turmoil and a storm of emotions. I was devastated.
I read something a while ago and because I related so well to it, I kept it to read over now and then. Just a short quote. “Sometimes when you’re in a dark place you think you’ve been buried, but actually you’ve been planted. -Christine Caine” That feeling resonates with me now. I feel buried. Buried by the Cancer of course, but also buried by so many thoughts that weigh me down. When I lie in bed at night and can’t fall asleep I think of dying and what that will be like. Then I start to freak out and have a small panic attack. And then it’s almost impossible to fall back asleep. So I’ll get out of bed and change my pajamas, because they are often sweaty from me panicking, and then I’ll go watch something stupid on tv. Nothing sad, because that would just push me over the edge. Watching Beaches reduces me to a puddle of tears even on a good day! Eventually I’ll get tired enough to go back to bed for two or three hours. When morning comes I try my best to just show up. Dr. Swoboda says that even getting out of bed counts as showing up. It’s ok to be sad, as long as you are able to still function and find your way out of the sadness. That’s the hard part- finding your way out.
So how do I go from feeling buried to feeling planted? I don’t have the perfect answer to that yet. I think some major praying on my part is needed. Praying for guidance. Praying to see God’s plan. For He certainly has one for me. As one of my favorite verses says; “For I know the plans I have for you” declares the Lord. “Plans to prosper you and not to harm you. Plans to give you Hope and a Future.” -Jeremiah 29:11. Certainly God is giving me a future, I just have to trust in that. In Him. For now, I will keep trying to not feel buried. I will try to work my way out from under the pile that has been placed upon me. I want to come out from under the sadness and despair. For if I am indeed planted then surely I will grow and bloom, right? What an adventure this could be! Until next time, Suz
Greetings friends. I hope this finds you doing well and enjoying the arrival of summer. When last I wrote I was celebrating the birth of my grandson Bennett and the engagement of my daughter Kara. Now Bennett is 8 months old and Kara is married! I remember when I was first diagnosed in 2014 I prayed a lot to God, asking to let me live long enough to be a Grandma and to see all of my kids married. Fast forward six years and I have 2 grandkids and 2 out of 3 of my kids are happily married. My son Ryan isn’t married yet, but he has found his person, Serena, and that is the important part. I’m so happy each of my kids have found their person.
And now, in a weird twist of fate, while I am basking in the joy of seeing my kids grown up and living great lives, I get the news I always dread- my scan last week shows progression. Just three weeks after Kara and Michael’s wedding, the Cancer is growing. It’s never been gone, but the clinical trial I am on has kept it stable for the past two years. Every time I have a scan my research nurse, Chelsea, calls me with the exciting stable news. This time, she emailed me that the doctor wanted to wait to talk about it in person. Well, I knew then what that meant. I knew it wouldn’t be good news. Who waits to share good news?
Sure enough, two days later, as I waited in the room for Dr. Swoboda to come in, I kept thinking of how suddenly life can change. I wasn’t able to think positive at all, I knew it would be bad news. As soon as the doctor walked in she said “I know how stressed out you must be so I will get right to it. The Cancer has progressed….” and then she went on to explain some details. It is hard when you hear such horrible news to pay attention at that point. My mind went in a thousand different directions- none of them good. I thought how I had been praying the last six years to live long enough for certain milestones, and now in what seemed like a cruel twist of fate, God said “Ok- you have those grandkids and Kara is married, so it’s time to go back to the horrible Cancer situation.” Now in my head I knew God wasn’t really saying that, but in that moment, and in many moments to follow, it’s how I felt.
Dr. Swoboda did say that there is a chance that what I have is actually something called pseudo-progression. It means that there are so many cells gathering around my Cancer trying to fight it that it makes my Cancer look bigger on the scan. So we will do another scan on July 1 and then we will know for certain. After the doctor visit I had my treatment- six hours of sitting alone with nothing to think about except my probably no longer stable Cancer. Trust me, when you get that kind of news it is almost impossible to think about anything positive. All you think about is, quite frankly, dying. I thought a lot about my grandsons Jack and Bennett. If I would have died in 2014 I would have never been able to meet them. I love them so much, and would have been so sad to have not been around to see them be born. But now I feel I have more to lose. I know there is that saying; “It’s better to have loved and lost than to have never loved at all.” But I think it was easier to lose the idea of grandkids than to actually know those grandkids and lose them. Does that make sense?
I talked to my cousin John last night about God and my Cancer and how things may be changing for the worse. He told me to listen to this song by Casting Crowns called Just Be Held. I do love Christian music, so I gave it a listen. After listening to just the first two lines I started to cry.
“Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on.”
I can sure relate to just the beginning. I’m sure most people, Cancer or no Cancer, have had moments in their lives where they have felt like this. Later the song says;
And when you’re tired of fighting
Chained by your control
There’s freedom in surrender
Lay it down and let it go
So when you’re on your knees
And answers seem so far away
You’re not alone Stop holding on
And just be held
Your world’s not falling apart
It’s falling into place
I’m on the throne
Stop holding on and just be held
Those words brought me comfort and also a longing. A longing to be able to let it go. To just let someone else hold on to all my problems and worries. It made me start to think about even though I feel like my world is falling apart, God has a bigger plan for me. It's just one I don’t know about. But I need to let it go and let Him guide me. It’s really hard to let things go. When you are the one people come to for help or advise, it’s hard to switch gears and let go of your problems and give them over to someone else. And maybe in my case, the “someone else” is God. When you have a terminal illness and spend an inordinate amount of time thinking of dying, at some point your conversation ends up being with God. Especially when it's 3:00 in the morning and you can't sleep. I have to trust that God is working in my life in a way that is good for me and for the people in my life.
So for now, I will try to trust that my life, though maybe not heading in the direction I want, isn’t falling apart. It’s falling into place. And that place is right where God intends me to go. I am so grateful that I have been able to have time with my grandsons and that I was able to be at Kara and Michael's wedding. I will try my best to be patient over the next month while I wait for the scan. Scanxiety will probably be in high gear, so I’m going to try my best to be kind to myself. Maybe treat myself more and spend more time with my kids and grandkids. Keeping busy helps. I’ll check back in when I have the results. In the meantime, I appreciate your prayers and warm thoughts. Until next time, Suz
And now, in a weird twist of fate, while I am basking in the joy of seeing my kids grown up and living great lives, I get the news I always dread- my scan last week shows progression. Just three weeks after Kara and Michael’s wedding, the Cancer is growing. It’s never been gone, but the clinical trial I am on has kept it stable for the past two years. Every time I have a scan my research nurse, Chelsea, calls me with the exciting stable news. This time, she emailed me that the doctor wanted to wait to talk about it in person. Well, I knew then what that meant. I knew it wouldn’t be good news. Who waits to share good news?
Sure enough, two days later, as I waited in the room for Dr. Swoboda to come in, I kept thinking of how suddenly life can change. I wasn’t able to think positive at all, I knew it would be bad news. As soon as the doctor walked in she said “I know how stressed out you must be so I will get right to it. The Cancer has progressed….” and then she went on to explain some details. It is hard when you hear such horrible news to pay attention at that point. My mind went in a thousand different directions- none of them good. I thought how I had been praying the last six years to live long enough for certain milestones, and now in what seemed like a cruel twist of fate, God said “Ok- you have those grandkids and Kara is married, so it’s time to go back to the horrible Cancer situation.” Now in my head I knew God wasn’t really saying that, but in that moment, and in many moments to follow, it’s how I felt.
Dr. Swoboda did say that there is a chance that what I have is actually something called pseudo-progression. It means that there are so many cells gathering around my Cancer trying to fight it that it makes my Cancer look bigger on the scan. So we will do another scan on July 1 and then we will know for certain. After the doctor visit I had my treatment- six hours of sitting alone with nothing to think about except my probably no longer stable Cancer. Trust me, when you get that kind of news it is almost impossible to think about anything positive. All you think about is, quite frankly, dying. I thought a lot about my grandsons Jack and Bennett. If I would have died in 2014 I would have never been able to meet them. I love them so much, and would have been so sad to have not been around to see them be born. But now I feel I have more to lose. I know there is that saying; “It’s better to have loved and lost than to have never loved at all.” But I think it was easier to lose the idea of grandkids than to actually know those grandkids and lose them. Does that make sense?
I talked to my cousin John last night about God and my Cancer and how things may be changing for the worse. He told me to listen to this song by Casting Crowns called Just Be Held. I do love Christian music, so I gave it a listen. After listening to just the first two lines I started to cry.
“Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on.”
I can sure relate to just the beginning. I’m sure most people, Cancer or no Cancer, have had moments in their lives where they have felt like this. Later the song says;
And when you’re tired of fighting
Chained by your control
There’s freedom in surrender
Lay it down and let it go
So when you’re on your knees
And answers seem so far away
You’re not alone Stop holding on
And just be held
Your world’s not falling apart
It’s falling into place
I’m on the throne
Stop holding on and just be held
Those words brought me comfort and also a longing. A longing to be able to let it go. To just let someone else hold on to all my problems and worries. It made me start to think about even though I feel like my world is falling apart, God has a bigger plan for me. It's just one I don’t know about. But I need to let it go and let Him guide me. It’s really hard to let things go. When you are the one people come to for help or advise, it’s hard to switch gears and let go of your problems and give them over to someone else. And maybe in my case, the “someone else” is God. When you have a terminal illness and spend an inordinate amount of time thinking of dying, at some point your conversation ends up being with God. Especially when it's 3:00 in the morning and you can't sleep. I have to trust that God is working in my life in a way that is good for me and for the people in my life.
So for now, I will try to trust that my life, though maybe not heading in the direction I want, isn’t falling apart. It’s falling into place. And that place is right where God intends me to go. I am so grateful that I have been able to have time with my grandsons and that I was able to be at Kara and Michael's wedding. I will try my best to be patient over the next month while I wait for the scan. Scanxiety will probably be in high gear, so I’m going to try my best to be kind to myself. Maybe treat myself more and spend more time with my kids and grandkids. Keeping busy helps. I’ll check back in when I have the results. In the meantime, I appreciate your prayers and warm thoughts. Until next time, Suz
January 29, 2020
So, I have a quick confession to make- I watched way too many Hallmark movies over the holidays. I kept waiting for one that would mirror my life, even though I know my life as a Stage 4 Cancer Lab Rat will never be the theme of a Hallmark movie. But I felt like there might be a small glimmer of hope, having seen more than one television show that showed people meeting at chemo and falling in love. But I am here to tell you that I have never met the perfect man while I’ve been having treatment. Chemo, or any treatment, is not sexy. It just isn’t. No matter how Hollywood tries to sell it, it just doesn’t happen that way.
But that doesn’t stop anyone from wishing it could be so. I imagine myself sitting at my 8 hour treatment snuggled under a cozy blanket, my hair and make-up on point. I’m sipping my Orangina (this part is actually true) when I drop my piece of candy and some handsome man leans over from behind the curtain that separates us and hands me my candy. Our eyes lock, our hands touch, and just like that we are both cured and moving to a Christmas tree farm, after, of course, he tells me he is secretly a prince. Fairly common in the Hallmark world.
Back in my real world things are actually going quite well. In October we welcomed baby Bennett into our family. It is such a joy having a new baby around. My grandson Jack turned 2, and with each passing day he is more and more fun to be with. Once kids start communicating the fun never ends! He still calls me Gaga, even though I know he can pronounce Grandma. My best days are spent with the grandkids. Kaitlin and Jeremy bought a four bedroom house and one of the bedrooms is in the basement, so perfect for Gaga to have space. I've spent countless hours on the floor playing with Jack. He always makes me laugh and he is my number one fan! I feel so alive when I am at Kaitlin's house with the boys. Sometimes the "alive' is a bit painful from sitting on the floor, but it is worth it!
It's when I am home alone that I feel the weight of my disease. Cancer is such an isolating disease, and once I stopped working the free time that I thought I would want turned out to be anything but what “free” implies. Free conjures up visions of taking long and lazy vacations on a beach. Spending your days meeting friends for a mimosa brunch, than going home to lay in a hammock reading your favorite books. Free to spend time in your sunny kitchen baking your favorite sweets. Newsflash- my free time isn’t free at all. It should be called Alone Time. I spend my days trying to feel “good enough” to do things. Between the Cancer itself and the side effects of the treatment I don’t have seven days a week to spend being lazy and doing all those things I dreamed of. I don’t have any friends who have the amount of time off that I do. I’m too young to start going to senior citizen events at the local church. And quite honestly, I just don’t feel good enough to commit to many things, And that makes it hard to keep friends. Or make new ones. And so, I am left with all that alone time.
And for everyone else, life goes on. It keeps moving. And if you can’t keep up then you’re left behind. Life is in motion, and being in motion for me is sometimes difficult and painful. Sometimes I power through it, and other times I just can’t. It’s very unpredictable. I try to hold on to the things that make me happiest. Time with my kids, time with my grandkids. Time. It’s all centered around time. None of us is guaranteed a certain amount of time on Earth, but people who don’t have a terminal illness don’t usually spend an inordinate amount of time thinking about- well- time. Make sense?
So I spend my down time focusing on good things that will be happening in the near future. I have always been a planner, and I find it helps me get through my days if I have something fun to focus on. And this past Christmas I got a big one to focus on. Kara got engaged! Her boyfriend of just one year proposed, and she said Yes! Our family loves Michael, he is a great match for Kara and it is clear how much they love one another. They both knew very early on that they had met “the one”. So no point in waiting, the wedding is in May! That gives me something so happy to look forward to. Last year I had Ben’s arrival to focus on, and this year it’s Kara’s marriage. It is not lost on me how my family is moving and growing all the time. Life keeps going, even if I feel stuck in the same place. I want to keep up and not get left behind. I see their lives get busier and busier, and I try to figure out my place in the whole thing.
It is really difficult to sit on the sidelines watching people’s lives move forward. Sitting home alone so many hours and days. This isn’t how I pictured my life being. I expected to still be working and feeling like I am contributing something to the world. It’s hard to not throw myself completely into my kids' lives. I want to. But I also know they need to live their own lives and not feel like I have to be part of every little thing. All the time. So I try to not overwhelm my kids with trying to be with them all the time. And that, my friends, is not easy.
Next week I will be celebrating my 58th birthday on vacation- something I’ve been planning since last fall. Remember, I love to plan. I had hoped to have a catchy phrase like 58 and feeling great. But nope, that’s not always true. I remember my birthday slogan when I turned 53. It was 53 and Cancer free. I threw myself a party because I had just finished what turned out to be my first go around with Cancer. Looking back, I feel like I was so naive thinking I was done with Cancer. But being naive helped me have such a great time! Now I don’t have a party anymore- but I will have a vacation. Something to acknowledge that I am still here. That I still matter. And somehow, someway, I will find a way to matter more to myself this next year. Who knows? Maybe I will at least get a Hallmark moment if not the whole movie. Until next time, Suz
So, I have a quick confession to make- I watched way too many Hallmark movies over the holidays. I kept waiting for one that would mirror my life, even though I know my life as a Stage 4 Cancer Lab Rat will never be the theme of a Hallmark movie. But I felt like there might be a small glimmer of hope, having seen more than one television show that showed people meeting at chemo and falling in love. But I am here to tell you that I have never met the perfect man while I’ve been having treatment. Chemo, or any treatment, is not sexy. It just isn’t. No matter how Hollywood tries to sell it, it just doesn’t happen that way.
But that doesn’t stop anyone from wishing it could be so. I imagine myself sitting at my 8 hour treatment snuggled under a cozy blanket, my hair and make-up on point. I’m sipping my Orangina (this part is actually true) when I drop my piece of candy and some handsome man leans over from behind the curtain that separates us and hands me my candy. Our eyes lock, our hands touch, and just like that we are both cured and moving to a Christmas tree farm, after, of course, he tells me he is secretly a prince. Fairly common in the Hallmark world.
Back in my real world things are actually going quite well. In October we welcomed baby Bennett into our family. It is such a joy having a new baby around. My grandson Jack turned 2, and with each passing day he is more and more fun to be with. Once kids start communicating the fun never ends! He still calls me Gaga, even though I know he can pronounce Grandma. My best days are spent with the grandkids. Kaitlin and Jeremy bought a four bedroom house and one of the bedrooms is in the basement, so perfect for Gaga to have space. I've spent countless hours on the floor playing with Jack. He always makes me laugh and he is my number one fan! I feel so alive when I am at Kaitlin's house with the boys. Sometimes the "alive' is a bit painful from sitting on the floor, but it is worth it!
It's when I am home alone that I feel the weight of my disease. Cancer is such an isolating disease, and once I stopped working the free time that I thought I would want turned out to be anything but what “free” implies. Free conjures up visions of taking long and lazy vacations on a beach. Spending your days meeting friends for a mimosa brunch, than going home to lay in a hammock reading your favorite books. Free to spend time in your sunny kitchen baking your favorite sweets. Newsflash- my free time isn’t free at all. It should be called Alone Time. I spend my days trying to feel “good enough” to do things. Between the Cancer itself and the side effects of the treatment I don’t have seven days a week to spend being lazy and doing all those things I dreamed of. I don’t have any friends who have the amount of time off that I do. I’m too young to start going to senior citizen events at the local church. And quite honestly, I just don’t feel good enough to commit to many things, And that makes it hard to keep friends. Or make new ones. And so, I am left with all that alone time.
And for everyone else, life goes on. It keeps moving. And if you can’t keep up then you’re left behind. Life is in motion, and being in motion for me is sometimes difficult and painful. Sometimes I power through it, and other times I just can’t. It’s very unpredictable. I try to hold on to the things that make me happiest. Time with my kids, time with my grandkids. Time. It’s all centered around time. None of us is guaranteed a certain amount of time on Earth, but people who don’t have a terminal illness don’t usually spend an inordinate amount of time thinking about- well- time. Make sense?
So I spend my down time focusing on good things that will be happening in the near future. I have always been a planner, and I find it helps me get through my days if I have something fun to focus on. And this past Christmas I got a big one to focus on. Kara got engaged! Her boyfriend of just one year proposed, and she said Yes! Our family loves Michael, he is a great match for Kara and it is clear how much they love one another. They both knew very early on that they had met “the one”. So no point in waiting, the wedding is in May! That gives me something so happy to look forward to. Last year I had Ben’s arrival to focus on, and this year it’s Kara’s marriage. It is not lost on me how my family is moving and growing all the time. Life keeps going, even if I feel stuck in the same place. I want to keep up and not get left behind. I see their lives get busier and busier, and I try to figure out my place in the whole thing.
It is really difficult to sit on the sidelines watching people’s lives move forward. Sitting home alone so many hours and days. This isn’t how I pictured my life being. I expected to still be working and feeling like I am contributing something to the world. It’s hard to not throw myself completely into my kids' lives. I want to. But I also know they need to live their own lives and not feel like I have to be part of every little thing. All the time. So I try to not overwhelm my kids with trying to be with them all the time. And that, my friends, is not easy.
Next week I will be celebrating my 58th birthday on vacation- something I’ve been planning since last fall. Remember, I love to plan. I had hoped to have a catchy phrase like 58 and feeling great. But nope, that’s not always true. I remember my birthday slogan when I turned 53. It was 53 and Cancer free. I threw myself a party because I had just finished what turned out to be my first go around with Cancer. Looking back, I feel like I was so naive thinking I was done with Cancer. But being naive helped me have such a great time! Now I don’t have a party anymore- but I will have a vacation. Something to acknowledge that I am still here. That I still matter. And somehow, someway, I will find a way to matter more to myself this next year. Who knows? Maybe I will at least get a Hallmark moment if not the whole movie. Until next time, Suz
August 17, 2019
It’s been a busy summer, filled with plenty of ups and downs. Let’s start with the biggest up there can ever be; my daughter Kaitlin is expecting another baby boy in October! Jack is going to be a big brother. Wow. I am thrilled. Finding out Kaitlin is pregnant took me back to her first pregnancy in 2017. I remember being so afraid I wouldn’t be alive to see Jack born. I was so sick and all of the treatments I kept trying continued to fail. I remember thinking to myself this crazy thought; if it looks like I won’t make it to see Jack born, I wonder if Kaitlin’s obstetrician would be willing to do a C-section a little early? That could be my dying wish- surely the doctor would want me to see my grandson born, right? Of course I knew that idea was ludicrous, but in the sad state I was in it was a thought that came to me.
What is really amazing, however, is that now I have another grandson due in just 9 weeks and look where I am at. I am the poster lab rat of success! Every morning I wake up surprised that I am still here. Sure, my day to day life seems pretty solid right now, but in the back of my mind I know I am just one bad scan away from a very different future. A few weeks ago I had a sudden reminder that even though I mostly feel good, the cancer and the side effects of treatment are waiting on the edge of my existence, ready to jump in with no notice.
I’ve been experiencing muscle weakness for the past couple of months. Mostly in my legs when I am walking and sometimes in my arms now as well. For example, folding laundry is a tiring task for my arms now. Carrying groceries into the house requires more trips than it used to. The most noticeable change is walking up and down stairs. Between the lung issues and now the muscle weakness, stairs are not my friend. A couple of weeks ago I was walking down the five wooden stairs from my bedroom to my living room and I suddenly felt myself tumbling down. I landed with a solid thud all the way at the bottom and knew right away that there would be some consequence to pay. But being a lab rat that is used to having to endure pain and power through it, I decided it wasn’t so bad. Sure my foot hurt a lot, but I’ve had much worse pain. I decided to just move on and pay no special attention to it.
Well, seven days later I was telling my research nurse Chelsea about the fall (side note- at the start of every single treatment I am asked a list of about 15 questions- the same ones every single time. I know them by heart. But this time, when the nurse asked “any falls in the last 12 months”?, I had to answer Yes. Chelsea asked all about what happened and said she would return after talking to the doctor. I thought they were making a big fuss of a minor fall. On the 1-10 pain scale, I rated my foot pain to be a 3. But here is the problem with the pain scale. Someone who has no chronic pain might rate the same foot pain I was having as an 8, but since I have lived through things that were clearly a 10 (the botched lung biopsy where they didn’t give me enough numbing medicine and I felt the cutting of the tissue and screamed comes to mind as a 10), how can I even consider rating this foot pain at anything over a 3?”)
Chelsea soon returned to let me know my oncologist wanted me to have an MRI of the brain to rule out any issues I might be having. Issues means mets to the brain, but calling it ‘issues” sounds nicer. I said, ``No thank you.” I didn’t feel an MRI was really needed. I reminded Chelsea of my last brain MRI where they put this cage over my head and then screwed the cage to the table, thereby making any movement impossible. After the cage is screwed to the table they hand you this little “panic button” to press for emergency, and then Swoosh- they press a button and you slide into this closed metal tube. To be fair, there is an opening on the other end, but since your head is basically screwed to the table you can’t see it. And your face is mere inches from the machine. It made me panic and my heart was racing. Several times I wanted to push the panic button, but I knew I would just have to come back another day if I didn’t get it done that day. 45 minutes later I was done. I didn’t count, but I would guess that in that 45 minutes I managed to say probably 80 Hail Mary’s and 70 Our Father’s, with a few Amazing Grace songs thrown in the mix. You’ve heard the old saying “there are no atheists in foxholes”? Well I felt the same about the MRI machine with your head bolted to the table.
Anyway, as you can probably tell, I was in no hurry to repeat that experience. Chelsea called the doctor back and she came back with a compromise; get a Ct instead. That’s easy peasy, so I said yes to that. A few days later the Ct came back clean, meaning the muscle weakness may have indeed caused the fall, but the muscle weakness wasn’t due to any cancer in the brain. Whew! The foot x-ray showed I broke three different bones and I am now in one of those fashionable walking boot things for the next six weeks. I guess the pain level could have been over a 3 since I did break some bones...but I still stand by my 3.
Even though I received great news from the Ct scan, the weakness and the fall have now led me to start thinking about moving out of my house. I live alone in the four bedroom house my kids grew up in. I didn’t want to downsize until I was certain none of them would need to come back home. With my youngest now being 27 (how did that happen???) it is a safe bet that she won’t be coming back home. I know in my head that I should move now, before anything gets worse. I don’t want to be in a dire health situation and having to look around for a new place to live. But the task of moving from a house you’ve lived in for 29 years is daunting. I don’t know how I will get the energy to pack it all up- and to say goodbye to things I just don’t need anymore. The emotional part is hard. I’ve never been good at letting go of things. I am like my dad was, very sentimental. I’ve saved so many things over the years and it will be hard to part with them. When my mom was in failing health she had Kaitlin come to her house at least once a week during one summer and had Kaitlin throw away a ton of stuff so that when she died we wouldn’t have much to go through. And while that did work out for those of us left behind, I’m not finding it easy to just get rid of things. Let’s just say it’s a work in progress.
I am giving myself until next August to have the house packed and ready to go. Yes, I know that is a crazy amount of time, and Yes, my health may deteriorate before than, but next August is when I finish my clinical trial- so that seems like a reasonable time to move. I’m open to moving before then, if I can get it all done. But then comes the next hard thing to think about- where to move. I have Kaitlin 40 miles away, Ryan in California, and Kara 2 miles away. I’ve been a strong, independent woman my whole life, so I know that answer of where to move should be to the place that makes me happiest. But that’s just it, being around my kids (and grandkids) is what makes me happiest, so how do I choose? Maybe I will just sell my house and buy a motor home and park in their driveways. Hmmmm...I’ll let you know how that idea progresses! Until next time, Suz
It’s been a busy summer, filled with plenty of ups and downs. Let’s start with the biggest up there can ever be; my daughter Kaitlin is expecting another baby boy in October! Jack is going to be a big brother. Wow. I am thrilled. Finding out Kaitlin is pregnant took me back to her first pregnancy in 2017. I remember being so afraid I wouldn’t be alive to see Jack born. I was so sick and all of the treatments I kept trying continued to fail. I remember thinking to myself this crazy thought; if it looks like I won’t make it to see Jack born, I wonder if Kaitlin’s obstetrician would be willing to do a C-section a little early? That could be my dying wish- surely the doctor would want me to see my grandson born, right? Of course I knew that idea was ludicrous, but in the sad state I was in it was a thought that came to me.
What is really amazing, however, is that now I have another grandson due in just 9 weeks and look where I am at. I am the poster lab rat of success! Every morning I wake up surprised that I am still here. Sure, my day to day life seems pretty solid right now, but in the back of my mind I know I am just one bad scan away from a very different future. A few weeks ago I had a sudden reminder that even though I mostly feel good, the cancer and the side effects of treatment are waiting on the edge of my existence, ready to jump in with no notice.
I’ve been experiencing muscle weakness for the past couple of months. Mostly in my legs when I am walking and sometimes in my arms now as well. For example, folding laundry is a tiring task for my arms now. Carrying groceries into the house requires more trips than it used to. The most noticeable change is walking up and down stairs. Between the lung issues and now the muscle weakness, stairs are not my friend. A couple of weeks ago I was walking down the five wooden stairs from my bedroom to my living room and I suddenly felt myself tumbling down. I landed with a solid thud all the way at the bottom and knew right away that there would be some consequence to pay. But being a lab rat that is used to having to endure pain and power through it, I decided it wasn’t so bad. Sure my foot hurt a lot, but I’ve had much worse pain. I decided to just move on and pay no special attention to it.
Well, seven days later I was telling my research nurse Chelsea about the fall (side note- at the start of every single treatment I am asked a list of about 15 questions- the same ones every single time. I know them by heart. But this time, when the nurse asked “any falls in the last 12 months”?, I had to answer Yes. Chelsea asked all about what happened and said she would return after talking to the doctor. I thought they were making a big fuss of a minor fall. On the 1-10 pain scale, I rated my foot pain to be a 3. But here is the problem with the pain scale. Someone who has no chronic pain might rate the same foot pain I was having as an 8, but since I have lived through things that were clearly a 10 (the botched lung biopsy where they didn’t give me enough numbing medicine and I felt the cutting of the tissue and screamed comes to mind as a 10), how can I even consider rating this foot pain at anything over a 3?”)
Chelsea soon returned to let me know my oncologist wanted me to have an MRI of the brain to rule out any issues I might be having. Issues means mets to the brain, but calling it ‘issues” sounds nicer. I said, ``No thank you.” I didn’t feel an MRI was really needed. I reminded Chelsea of my last brain MRI where they put this cage over my head and then screwed the cage to the table, thereby making any movement impossible. After the cage is screwed to the table they hand you this little “panic button” to press for emergency, and then Swoosh- they press a button and you slide into this closed metal tube. To be fair, there is an opening on the other end, but since your head is basically screwed to the table you can’t see it. And your face is mere inches from the machine. It made me panic and my heart was racing. Several times I wanted to push the panic button, but I knew I would just have to come back another day if I didn’t get it done that day. 45 minutes later I was done. I didn’t count, but I would guess that in that 45 minutes I managed to say probably 80 Hail Mary’s and 70 Our Father’s, with a few Amazing Grace songs thrown in the mix. You’ve heard the old saying “there are no atheists in foxholes”? Well I felt the same about the MRI machine with your head bolted to the table.
Anyway, as you can probably tell, I was in no hurry to repeat that experience. Chelsea called the doctor back and she came back with a compromise; get a Ct instead. That’s easy peasy, so I said yes to that. A few days later the Ct came back clean, meaning the muscle weakness may have indeed caused the fall, but the muscle weakness wasn’t due to any cancer in the brain. Whew! The foot x-ray showed I broke three different bones and I am now in one of those fashionable walking boot things for the next six weeks. I guess the pain level could have been over a 3 since I did break some bones...but I still stand by my 3.
Even though I received great news from the Ct scan, the weakness and the fall have now led me to start thinking about moving out of my house. I live alone in the four bedroom house my kids grew up in. I didn’t want to downsize until I was certain none of them would need to come back home. With my youngest now being 27 (how did that happen???) it is a safe bet that she won’t be coming back home. I know in my head that I should move now, before anything gets worse. I don’t want to be in a dire health situation and having to look around for a new place to live. But the task of moving from a house you’ve lived in for 29 years is daunting. I don’t know how I will get the energy to pack it all up- and to say goodbye to things I just don’t need anymore. The emotional part is hard. I’ve never been good at letting go of things. I am like my dad was, very sentimental. I’ve saved so many things over the years and it will be hard to part with them. When my mom was in failing health she had Kaitlin come to her house at least once a week during one summer and had Kaitlin throw away a ton of stuff so that when she died we wouldn’t have much to go through. And while that did work out for those of us left behind, I’m not finding it easy to just get rid of things. Let’s just say it’s a work in progress.
I am giving myself until next August to have the house packed and ready to go. Yes, I know that is a crazy amount of time, and Yes, my health may deteriorate before than, but next August is when I finish my clinical trial- so that seems like a reasonable time to move. I’m open to moving before then, if I can get it all done. But then comes the next hard thing to think about- where to move. I have Kaitlin 40 miles away, Ryan in California, and Kara 2 miles away. I’ve been a strong, independent woman my whole life, so I know that answer of where to move should be to the place that makes me happiest. But that’s just it, being around my kids (and grandkids) is what makes me happiest, so how do I choose? Maybe I will just sell my house and buy a motor home and park in their driveways. Hmmmm...I’ll let you know how that idea progresses! Until next time, Suz
May 9, 2019
I’m not sure why I’ve stayed away from my blog for so long. My daughter Kaitlin has been after me to write, saying just because “nothing is happening” doesn’t mean there isn’t anything to write about. I think she is right. I am finally in a good place right now and I guess part of me just doesn’t want to jinx it. It’s been relatively easy to write my blog when I’ve been fueled by hurt and anger, but now that things are calm it feels like there just isn’t as much to share.
So here is the update- spoiler alert- it’s all good news. After surviving my near death experience back in January at the hands of the medical team at Rush, I have been able to move past that trauma. It hasn’t always been easy, but I’m finally on the other side of it. It took awhile though. I talked with several law firms about pursuing legal action, but every firm turned me down, saying that my “damage”wasn’t enough to sue for. Apparently, since I don’t have any permanent physical effects from their mistake, it’s not considered a good case. While it really upset me to not have any way to hold people accountable for what they did to me, in the end I decided it wasn’t worth all of the negative energy to stay angry about it.
The last few months I have spent time trying my best to transition from feeling that I am “dying of Cancer” to feeling that I am “living with Cancer”. I decided to try and focus on the positive and keep the negative as minimal as possible. It’s hard. It’s especially challenging when I have to go once a week (at least) to be a lab rat hooked up to an IV for a good part of the day. Sitting in the chemo “pods” looking at the people around you in various stages of the disease makes it difficult to stay positive.
I know some people who have said that Cancer changed their life for the better. That they learned to focus on the things that really matter in life, instead of spending time on things that, in the end, don’t really matter. But while I have been busy “dying of Cancer’ for the past 3 years (as metastatic) it has been hard to find ways that Cancer has made my life better. I have lost so many things to Cancer. It has changed my outlook and plans for the future. It has been very depressing, at times overwhelmingly so. But when scan after scan comes back Stable, shouldn’t I start thinking positive? What’s keeping me from being positive and happy? The answer to that is- Fear. Fear that the very next scan will be the one with progression. With out of control Cancer everywhere. With suddenly finding there is no hope left.
So how do I combat the fear and tuck it away in the back of my mind? My guess is to start doing the things I have always loved to do and keep putting more and more positive things in my life. Sounds easy, but it’s not. Not for someone with a terminal illness. I can’t escape the scary Cancer thoughts when I have to get treatment every week. Or when the treatment makes me sick. Or when I can’t do as many physical things because I only have one lung left. See how easy it is to make excuses for staying scared and withdrawn? There are days I talk to no one but my faithful St. Bernard, Tessie. Tessie will be 18 in July, and my vet is always shocked to see her. Most St. Bernards only live to be 10-12. I think God is letting Tessie stay to watch over me. We call her a “divine creature”. Anyway, I digress.
The point is, I need to suck it up and stop finding reasons to not truly live the rest of my life, to move from “dying of Cancer’ to “living with Cancer”. One day at a time. Or maybe, to start, just one hour at a time. Embrace the happiness and joy that I can find, and let go, little by little, of the fear. I don’t want to waste time sitting around waiting to die when I could be out there in the world making the most of the time I have left. And who knows how long that might be? As of April, I have officially outlived my 36 month diagnosis. Am I on borrowed time now? Maybe. Or maybe the clinical trial I am on will change the diagnosis and I’ll be here another ten years. So today I am choosing to live with Cancer, and until my body rejects all the treatments, I will try to stop feeling like I am dying of Cancer. Wish me luck! Until next time, Suz
I’m not sure why I’ve stayed away from my blog for so long. My daughter Kaitlin has been after me to write, saying just because “nothing is happening” doesn’t mean there isn’t anything to write about. I think she is right. I am finally in a good place right now and I guess part of me just doesn’t want to jinx it. It’s been relatively easy to write my blog when I’ve been fueled by hurt and anger, but now that things are calm it feels like there just isn’t as much to share.
So here is the update- spoiler alert- it’s all good news. After surviving my near death experience back in January at the hands of the medical team at Rush, I have been able to move past that trauma. It hasn’t always been easy, but I’m finally on the other side of it. It took awhile though. I talked with several law firms about pursuing legal action, but every firm turned me down, saying that my “damage”wasn’t enough to sue for. Apparently, since I don’t have any permanent physical effects from their mistake, it’s not considered a good case. While it really upset me to not have any way to hold people accountable for what they did to me, in the end I decided it wasn’t worth all of the negative energy to stay angry about it.
The last few months I have spent time trying my best to transition from feeling that I am “dying of Cancer” to feeling that I am “living with Cancer”. I decided to try and focus on the positive and keep the negative as minimal as possible. It’s hard. It’s especially challenging when I have to go once a week (at least) to be a lab rat hooked up to an IV for a good part of the day. Sitting in the chemo “pods” looking at the people around you in various stages of the disease makes it difficult to stay positive.
I know some people who have said that Cancer changed their life for the better. That they learned to focus on the things that really matter in life, instead of spending time on things that, in the end, don’t really matter. But while I have been busy “dying of Cancer’ for the past 3 years (as metastatic) it has been hard to find ways that Cancer has made my life better. I have lost so many things to Cancer. It has changed my outlook and plans for the future. It has been very depressing, at times overwhelmingly so. But when scan after scan comes back Stable, shouldn’t I start thinking positive? What’s keeping me from being positive and happy? The answer to that is- Fear. Fear that the very next scan will be the one with progression. With out of control Cancer everywhere. With suddenly finding there is no hope left.
So how do I combat the fear and tuck it away in the back of my mind? My guess is to start doing the things I have always loved to do and keep putting more and more positive things in my life. Sounds easy, but it’s not. Not for someone with a terminal illness. I can’t escape the scary Cancer thoughts when I have to get treatment every week. Or when the treatment makes me sick. Or when I can’t do as many physical things because I only have one lung left. See how easy it is to make excuses for staying scared and withdrawn? There are days I talk to no one but my faithful St. Bernard, Tessie. Tessie will be 18 in July, and my vet is always shocked to see her. Most St. Bernards only live to be 10-12. I think God is letting Tessie stay to watch over me. We call her a “divine creature”. Anyway, I digress.
The point is, I need to suck it up and stop finding reasons to not truly live the rest of my life, to move from “dying of Cancer’ to “living with Cancer”. One day at a time. Or maybe, to start, just one hour at a time. Embrace the happiness and joy that I can find, and let go, little by little, of the fear. I don’t want to waste time sitting around waiting to die when I could be out there in the world making the most of the time I have left. And who knows how long that might be? As of April, I have officially outlived my 36 month diagnosis. Am I on borrowed time now? Maybe. Or maybe the clinical trial I am on will change the diagnosis and I’ll be here another ten years. So today I am choosing to live with Cancer, and until my body rejects all the treatments, I will try to stop feeling like I am dying of Cancer. Wish me luck! Until next time, Suz
January 9, 2019
Hello delegates! I know this is an incredibly quick turnaround time since my last blog just last week, but something so horrific happened that rather than waiting to cool off and write about it calmly, I felt it better to strike while the iron is hot. And in this particular case, I am that iron and I am smoldering over what happened to me.
A brief background that leads up to the “event”. Having experienced severe back pain for two weeks, my oncologist suggested getting an MRI ASAP to rule out a metastasis to the spine. My nurse called around and no one could see me for two full weeks. We decided to send me right from treatment that day to the Emergency Department downstairs at Rush University Medical Center. I arrived at the ED around 6:00 p.m. and was told they would get me in to the MRI machine by 11:00. Since it was a long wait to have a two hour test, it was decided it would be best to admit me overnight. While in the ED I gave them all of my information about the cancer trial I am on and what prescriptions I currently take. Because my back pain was getting worse they delivered some pain meds through my port. The first shot I got was dilaudid- I don’t know the strength. Shortly after they did continue to give me the drugs I was already on, which included Extended Release Oxy, Ambien, and Gabapentin. Eventually I had the test and they took me to a room on the Oncology floor. They gave me more IV dilaudid along with all of my regular prescribed drugs.
Friday turned into Saturday and the day flies by waiting for results. All day nurses come and go, giving me a variety of meds. I flatly refused to take an antibiotic one doctor wanted to prescribe until my oncologist cleared it. You see, when you are in a Clinical Trial, there are certain drugs that you can not have, and if you do take them you can get kicked out of the trial. So I was adamant in my refusal of any new drugs without my oncologist’s consent. The one doctor actually called her in front of me so that I could hear her voice.
I laid down for sleep sometime after sending my last text to my daughter around 8:30 Saturday night. Now this is where the shit gets scary, so hold on. Buckle in for safety, this begins the wild ride. Sometime during Saturday night I thought I was having very weird and disturbing dreams- I “dreamed” of people shouting my name and pounding on my chest. I was screaming at people in the dream, but no one could hear me. Than the dream ended with me not being able to breath because I was vomiting so hard that I had no time to take a breath in. I woke up with my heart racing feeling terrified by “the dream”. Only guess what? It wasn’t a dream. It couldn’t have been a dream. I could taste vomit in my mouth.
When I looked around I was in a different room. It was just after 5 a.m. on Sunday morning. I slowly sat up and tried to get my bearings. I was trying to piece things together, trying to somehow make sense of it all. I sat up and put my feet on the ground so I could go to the bathroom, but suddenly a red light started flashing and a very loud alarm started to wail incessantly. I was so confused. A nurse ran into my room and took a hold of my shoulders and sat me back down, She asked what I was trying to do and said how I wasn’t allowed to go anywhere. I said I wanted to use the bathroom. She quickly told me that I would have to use the bedpan until she determined I was able to safely get to the bathroom.
After using the bedpan I asked the obvious questions of where am I ? and what happened? She proceeded to tell me, in a very accusatory way, that I had overdosed last night and luckily they caught it in time to give me the drug Narcan to save my life. (Narcan is all over the news these days as the miracle drug that can save a person’s life if they are overdosing on opiates). She told me they called a Code Blue on me when I was found unresponsive with a critically low blood pressure and shallow breathing. The Narcan saved my life. Yes, I am hugely grateful that the Narcan saved my life, but that doesn’t take away the anger and rage I feel over the fact that the hospital is the one who overdosed me on opiates in the first place!
My memory of what the hospital was referring to as “the event” or “the episode” came back in bits and pieces over the next few days. That first nurse flatout accused me of causing my own overdose, because I brought my own drugs into the hospital with me. Yes, I brought them with- but that was because I came directly from treatment where I have to bring them because I take that medicine at 9:00 every day and 9:00 every night, and I can’t miss one. Since my treatment that day was from 7:00 a.m. until 5:00 p.m. I had to bring that one prescription with.
I remember showing the first nurse who checked me into my room that I had my own prescription with just in case they couldn’t get it from the pharmacy in time. The nurse said it was hospital policy to confiscate any prescription drugs patients bring in and seal them in an envelope and place them in “the vault” on the fourth floor until the patient checks out. I said that was fine with me, but she commented that she didn’t see the need to do that with me as I “didn’t seem like I was the type looking to score drugs”. Considering I have Stage 4 Breast Cancer and am fighting my ass off every day to stay alive, no, I wasn’t going to play Russian Roulette and try to take more drugs than were prescribed.
Regardless of this information, the accusatory nurse continued to repeat that I had overdosed myself. I was confused and felt sick to my stomach and started to cry and asked if someone had called my children. No, no one has called your children the nurse said. Than I got Mama Bear angry- you mean I almost died and no one has thought to call my emergency contacts? My kids? I wanted to see my kids. Here I was in a strange environment feeling sicker than I’ve ever felt and more confused than ever before. I was having a hard time saying words- in my head I said one thing but something totally different was coming out of my mouth. I eventually laid back down and cried myself to sleep.
When I woke a few hours later more memories were coming back to me, and now I remembered feeling terrified. I was in and out of consciousness. I remember thrashing back and forth, flailing my head from one side to the next. I heard lots of people shouting my name. I thought I was answering them, but they just kept shouting. There were hands all over me. Some people were rubbing my sternum hard with their fist. Someone else was at me feet stroking my legs. They were all shouting. Some felt I was responding and others didn’t. It kept going from light to dark.
The moments of darkness would come over me like a welcome warmth, as if a heavy blanket was surrounding me. I wanted to stay there, dark and warm. But then someone would shake me and there would be a flash of silver light and shouting and noises and someone sticking my hand with a needle. I think I swung at him. I remember yelling at him that he has already stuck me twice and he doesn’t get a third chance so leave me alone. I don’t know how long this went on. But in the end, they gave me the Narcan. The miracle drug.
I’ve watched enough hospital and police shows to have seen addicts on the streets saved by Narcan. And it’s always been portrayed as this serene “come to Jesus moment’ of peacefulness. The person is always almost dead, the good guy (be they doctor, nurse, cop…) gives the shot and BAM. The “addict” sits up and takes a deep breath and is resurrected. Well I am here to tell you first hand people, it was no soft, warmly lit moment- it was cold, harsh and painful minutes of me hanging over the side of the bed vomiting for what felt like an eternity. In and out of consciousness, but always vomiting. I was vomiting so hard that I couldn’t breath. I couldn’t take a breath in because the vomit was gagging me. I thought I was going to die. I thought I was dying. And it was cold and evil and horrifying. Every last second of it.
I don’t know what happened next. I just woke up some hours later in the ICU with that taste of vomit in my mouth acting as the taste of truth. If I could taste vomit, than what I thought was a nightmare, wasn’t. It was real. Later, on Sunday, I was moved back to the Oncology floor. Several people, from a nurse to the custodial man, told me they had witnessed my Code Blue. They all said how scary it was and how it didn’t seem like I was going to pull through. No one, ever, took responsibility for what happened to me.
I asked several times my last day there for someone to bring me the prescription bottle I had brought with me so that I could count the pills to prove I didn’t do this to myself. No one ever did. They gave it to me in a sealed bag the day I left. I got home that night with the intention of counting them immediately. But than, fear set in. I almost died. I was now so afraid to take any drug, so I took none and than barely slept. I knew my body would go into withdrawal if I just suddenly stopped taking my prescription drugs, but I was to scared to take them.
But than, I needed to know. I needed to know if I had accidentally taken even one more pill than I should have. I opened the envelope and the bottle and counted the pills. 30- the exact number that should have been in the bottle. I breathed a huge sigh of relief- I was right all along. I did not do this to myself. The hospital overdosed me. The hospital almost killed me.
I called my oncologist’s nurse to talk it all over and to ask if my doctor wanted to change anything regarding my drug regimen. She said No, just keep taking what you’ve been taking for the past 7 months. We talked for a while longer. She said both her and my oncologist were appalled when they saw what the ED doctors had ordered for me. They were giving my IV Oxy four times higher than what I take. In addition to the two doses of dilaudid. But no one has the answer of why this happened. Who screwed up?
My own doctor was not the one who prescribed it, it was the ED doctor. But is the blame there? Or with a nurse who maybe didn’t do enough research to know what my current doses were? Or was it the pharmacy for not questioning how this cancer patient who currently takes the very lowest dose of oxy available was going to suddenly handle drugs 4 times the strength? WHO SCREWED UP? I can tell you who didn’t- ME.
So now what? I can’t in all good conscious do nothing. How many other innocent people has this happened to? How many have died? Do families even know when this happens? No one called my family. Calling my kids would have been the right thing to do. Hell, it would have been the human thing to do. Didn’t anyone stop to think how I would feel when I woke up? Shaking from fear? Wouldn’t it have been helpful for me to have my kids by my side when I woke up to this horrific tale? Not even a tale, but a truth. An undeniable truth. Something that was done to me, against my will. Something that almost killed me.
I didn’t “almost die” in the hospital that night. I was almost murdered. How else can it be described? And now, I am really messed up. I have been through a traumatic experience and I don’t know how I will ever be ok to return to any hospital. Some of those drugs were given to me through my IV while I slept. How could I have refused them, the way I refused the simple antibiotics until someone spoke to my doctor? I am a victim and am lucky to be alive to tell my story.
Right now, it’s all I think about. I keep having flashbacks of that night. Of people shouting my name and rubbing my sternum. Of me throwing up so hard I could not breath. Of me thinking, this is it. I am dying and there is no calming, white light to go to. It was either shouting people and flashing lights on one side, or darkness and warmth on the other side. I’ve been freaked out about dying since I was diagnosed in 2014, if someone tells you that aren’t freaked out I call Bullshit. But anyway, my freaked out meter is on a whole new scale now. I am afraid to sleep now. And I haven’t found a way to stop thinking about it.
I plan to fill out the forms to get copies of everything that happened during my hospital stay. I don’t know if there is some type of incident report filled out every time someone codes, or whenever someone overdoses, but believe me, I plan to find out.I won’t rest until I find out how this happened to me, in hopes that it won’t happen to anyone else. Living with cancer, or as some would say, dying of cancer, is scary enough. I did not need to have anything else happen to me to scare me even more.
On a lighter note, do they have dogs that can tell if I’ve overdosed in case this happens to me again? The least I can get out of this whole terrifying ordeal is a cute dog that can alert me if I have to many opiates in me. Just a thought. I pray there will never be a next time, Your friend, Suz
PS I always encourage my readers to share my blog because I want the world to know what it’s really like living with terminal cancer. In hopes of helping others. But if you’re only going to share one thing today, make it this blog. People need to hear what happens. This shit is real.
Hello delegates! I know this is an incredibly quick turnaround time since my last blog just last week, but something so horrific happened that rather than waiting to cool off and write about it calmly, I felt it better to strike while the iron is hot. And in this particular case, I am that iron and I am smoldering over what happened to me.
A brief background that leads up to the “event”. Having experienced severe back pain for two weeks, my oncologist suggested getting an MRI ASAP to rule out a metastasis to the spine. My nurse called around and no one could see me for two full weeks. We decided to send me right from treatment that day to the Emergency Department downstairs at Rush University Medical Center. I arrived at the ED around 6:00 p.m. and was told they would get me in to the MRI machine by 11:00. Since it was a long wait to have a two hour test, it was decided it would be best to admit me overnight. While in the ED I gave them all of my information about the cancer trial I am on and what prescriptions I currently take. Because my back pain was getting worse they delivered some pain meds through my port. The first shot I got was dilaudid- I don’t know the strength. Shortly after they did continue to give me the drugs I was already on, which included Extended Release Oxy, Ambien, and Gabapentin. Eventually I had the test and they took me to a room on the Oncology floor. They gave me more IV dilaudid along with all of my regular prescribed drugs.
Friday turned into Saturday and the day flies by waiting for results. All day nurses come and go, giving me a variety of meds. I flatly refused to take an antibiotic one doctor wanted to prescribe until my oncologist cleared it. You see, when you are in a Clinical Trial, there are certain drugs that you can not have, and if you do take them you can get kicked out of the trial. So I was adamant in my refusal of any new drugs without my oncologist’s consent. The one doctor actually called her in front of me so that I could hear her voice.
I laid down for sleep sometime after sending my last text to my daughter around 8:30 Saturday night. Now this is where the shit gets scary, so hold on. Buckle in for safety, this begins the wild ride. Sometime during Saturday night I thought I was having very weird and disturbing dreams- I “dreamed” of people shouting my name and pounding on my chest. I was screaming at people in the dream, but no one could hear me. Than the dream ended with me not being able to breath because I was vomiting so hard that I had no time to take a breath in. I woke up with my heart racing feeling terrified by “the dream”. Only guess what? It wasn’t a dream. It couldn’t have been a dream. I could taste vomit in my mouth.
When I looked around I was in a different room. It was just after 5 a.m. on Sunday morning. I slowly sat up and tried to get my bearings. I was trying to piece things together, trying to somehow make sense of it all. I sat up and put my feet on the ground so I could go to the bathroom, but suddenly a red light started flashing and a very loud alarm started to wail incessantly. I was so confused. A nurse ran into my room and took a hold of my shoulders and sat me back down, She asked what I was trying to do and said how I wasn’t allowed to go anywhere. I said I wanted to use the bathroom. She quickly told me that I would have to use the bedpan until she determined I was able to safely get to the bathroom.
After using the bedpan I asked the obvious questions of where am I ? and what happened? She proceeded to tell me, in a very accusatory way, that I had overdosed last night and luckily they caught it in time to give me the drug Narcan to save my life. (Narcan is all over the news these days as the miracle drug that can save a person’s life if they are overdosing on opiates). She told me they called a Code Blue on me when I was found unresponsive with a critically low blood pressure and shallow breathing. The Narcan saved my life. Yes, I am hugely grateful that the Narcan saved my life, but that doesn’t take away the anger and rage I feel over the fact that the hospital is the one who overdosed me on opiates in the first place!
My memory of what the hospital was referring to as “the event” or “the episode” came back in bits and pieces over the next few days. That first nurse flatout accused me of causing my own overdose, because I brought my own drugs into the hospital with me. Yes, I brought them with- but that was because I came directly from treatment where I have to bring them because I take that medicine at 9:00 every day and 9:00 every night, and I can’t miss one. Since my treatment that day was from 7:00 a.m. until 5:00 p.m. I had to bring that one prescription with.
I remember showing the first nurse who checked me into my room that I had my own prescription with just in case they couldn’t get it from the pharmacy in time. The nurse said it was hospital policy to confiscate any prescription drugs patients bring in and seal them in an envelope and place them in “the vault” on the fourth floor until the patient checks out. I said that was fine with me, but she commented that she didn’t see the need to do that with me as I “didn’t seem like I was the type looking to score drugs”. Considering I have Stage 4 Breast Cancer and am fighting my ass off every day to stay alive, no, I wasn’t going to play Russian Roulette and try to take more drugs than were prescribed.
Regardless of this information, the accusatory nurse continued to repeat that I had overdosed myself. I was confused and felt sick to my stomach and started to cry and asked if someone had called my children. No, no one has called your children the nurse said. Than I got Mama Bear angry- you mean I almost died and no one has thought to call my emergency contacts? My kids? I wanted to see my kids. Here I was in a strange environment feeling sicker than I’ve ever felt and more confused than ever before. I was having a hard time saying words- in my head I said one thing but something totally different was coming out of my mouth. I eventually laid back down and cried myself to sleep.
When I woke a few hours later more memories were coming back to me, and now I remembered feeling terrified. I was in and out of consciousness. I remember thrashing back and forth, flailing my head from one side to the next. I heard lots of people shouting my name. I thought I was answering them, but they just kept shouting. There were hands all over me. Some people were rubbing my sternum hard with their fist. Someone else was at me feet stroking my legs. They were all shouting. Some felt I was responding and others didn’t. It kept going from light to dark.
The moments of darkness would come over me like a welcome warmth, as if a heavy blanket was surrounding me. I wanted to stay there, dark and warm. But then someone would shake me and there would be a flash of silver light and shouting and noises and someone sticking my hand with a needle. I think I swung at him. I remember yelling at him that he has already stuck me twice and he doesn’t get a third chance so leave me alone. I don’t know how long this went on. But in the end, they gave me the Narcan. The miracle drug.
I’ve watched enough hospital and police shows to have seen addicts on the streets saved by Narcan. And it’s always been portrayed as this serene “come to Jesus moment’ of peacefulness. The person is always almost dead, the good guy (be they doctor, nurse, cop…) gives the shot and BAM. The “addict” sits up and takes a deep breath and is resurrected. Well I am here to tell you first hand people, it was no soft, warmly lit moment- it was cold, harsh and painful minutes of me hanging over the side of the bed vomiting for what felt like an eternity. In and out of consciousness, but always vomiting. I was vomiting so hard that I couldn’t breath. I couldn’t take a breath in because the vomit was gagging me. I thought I was going to die. I thought I was dying. And it was cold and evil and horrifying. Every last second of it.
I don’t know what happened next. I just woke up some hours later in the ICU with that taste of vomit in my mouth acting as the taste of truth. If I could taste vomit, than what I thought was a nightmare, wasn’t. It was real. Later, on Sunday, I was moved back to the Oncology floor. Several people, from a nurse to the custodial man, told me they had witnessed my Code Blue. They all said how scary it was and how it didn’t seem like I was going to pull through. No one, ever, took responsibility for what happened to me.
I asked several times my last day there for someone to bring me the prescription bottle I had brought with me so that I could count the pills to prove I didn’t do this to myself. No one ever did. They gave it to me in a sealed bag the day I left. I got home that night with the intention of counting them immediately. But than, fear set in. I almost died. I was now so afraid to take any drug, so I took none and than barely slept. I knew my body would go into withdrawal if I just suddenly stopped taking my prescription drugs, but I was to scared to take them.
But than, I needed to know. I needed to know if I had accidentally taken even one more pill than I should have. I opened the envelope and the bottle and counted the pills. 30- the exact number that should have been in the bottle. I breathed a huge sigh of relief- I was right all along. I did not do this to myself. The hospital overdosed me. The hospital almost killed me.
I called my oncologist’s nurse to talk it all over and to ask if my doctor wanted to change anything regarding my drug regimen. She said No, just keep taking what you’ve been taking for the past 7 months. We talked for a while longer. She said both her and my oncologist were appalled when they saw what the ED doctors had ordered for me. They were giving my IV Oxy four times higher than what I take. In addition to the two doses of dilaudid. But no one has the answer of why this happened. Who screwed up?
My own doctor was not the one who prescribed it, it was the ED doctor. But is the blame there? Or with a nurse who maybe didn’t do enough research to know what my current doses were? Or was it the pharmacy for not questioning how this cancer patient who currently takes the very lowest dose of oxy available was going to suddenly handle drugs 4 times the strength? WHO SCREWED UP? I can tell you who didn’t- ME.
So now what? I can’t in all good conscious do nothing. How many other innocent people has this happened to? How many have died? Do families even know when this happens? No one called my family. Calling my kids would have been the right thing to do. Hell, it would have been the human thing to do. Didn’t anyone stop to think how I would feel when I woke up? Shaking from fear? Wouldn’t it have been helpful for me to have my kids by my side when I woke up to this horrific tale? Not even a tale, but a truth. An undeniable truth. Something that was done to me, against my will. Something that almost killed me.
I didn’t “almost die” in the hospital that night. I was almost murdered. How else can it be described? And now, I am really messed up. I have been through a traumatic experience and I don’t know how I will ever be ok to return to any hospital. Some of those drugs were given to me through my IV while I slept. How could I have refused them, the way I refused the simple antibiotics until someone spoke to my doctor? I am a victim and am lucky to be alive to tell my story.
Right now, it’s all I think about. I keep having flashbacks of that night. Of people shouting my name and rubbing my sternum. Of me throwing up so hard I could not breath. Of me thinking, this is it. I am dying and there is no calming, white light to go to. It was either shouting people and flashing lights on one side, or darkness and warmth on the other side. I’ve been freaked out about dying since I was diagnosed in 2014, if someone tells you that aren’t freaked out I call Bullshit. But anyway, my freaked out meter is on a whole new scale now. I am afraid to sleep now. And I haven’t found a way to stop thinking about it.
I plan to fill out the forms to get copies of everything that happened during my hospital stay. I don’t know if there is some type of incident report filled out every time someone codes, or whenever someone overdoses, but believe me, I plan to find out.I won’t rest until I find out how this happened to me, in hopes that it won’t happen to anyone else. Living with cancer, or as some would say, dying of cancer, is scary enough. I did not need to have anything else happen to me to scare me even more.
On a lighter note, do they have dogs that can tell if I’ve overdosed in case this happens to me again? The least I can get out of this whole terrifying ordeal is a cute dog that can alert me if I have to many opiates in me. Just a thought. I pray there will never be a next time, Your friend, Suz
PS I always encourage my readers to share my blog because I want the world to know what it’s really like living with terminal cancer. In hopes of helping others. But if you’re only going to share one thing today, make it this blog. People need to hear what happens. This shit is real.
January 1, 2019
Out with the old and in with the new. Happy New Year friends. It’s that time of year when I take time to reflect on last year and make plans for the coming year. It’s hard to make plans though when I am living my life on a scan to scan basis. The trial I am on requires a new ct scan every six weeks. When I am fortunate enough to get good scan results I feel like I can finally breathe. But that feeling is short-lived because a few weeks later I am already worrying about the next upcoming scan. It is difficult to throw myself into a feeling of security and surround myself with encouraging vibes when I know the next scan might take it all away. And so I continue to live on a six week time frame.
I’ve only had two scans since I started the trial- they don’t do the first scan until you have been on the trial for three months. My first scan result showed some promising news- the cancer was stable. Nothing new had grown and there were even two cancer spots that had decreased ever so slightly. I celebrated the heck out of that news with everyone! From a waffle breakfast to a much deserved drink with friends. I surrounded myself with happy and encouraging vibes and tried my best to live in that moment and make it last as long as I could.
In November my Dutch “daughter” Maddie came for a visit. Her mom Thea and I became penpals in 1987 and over the years we have become “soul mates”, We’ve gone from one letter a month to texting every day and Facetiming at least once a week. I consider Thea’s family to be my Dutch family. Maddie had a break from medical school and came to spend it with me.
We made the most of our time together. Along with Kara we went to Denver to celebrate Thanksgiving with Ryan and Serena. When we got home we had another Thanksgiving dinner with Kaitlin, Jeremy and Jack. With all the good news from the trial I felt like Thanksgiving was a great reminder of all we have to be thankful for this year.
After Thanksgiving I was able to check something off of my Bucket List- we went on a road trip with my nephew Kenny. I’ve wanted to travel with Kenny for years- he always makes us laugh and is just so much fun to be around. Kenny has been a big help for me during all this cancer time- from taking me for treatments to coming with me for one of my biopsies. He is one person I know I can always count on.
I decided to go to Niagara Falls for our vacation. It is one of my favorite places and I had never been there in the winter. So off we went, Kenny and his new fiancee Krystle, and Maddie and me. None of them had been there before. We arrived at night and ate dinner than went to bed. When we woke up the next day and looked out our window to see the Falls it had transformed into a winter wonderland. It had snowed several inches overnight and the view was breathtaking. We walked to the Falls and for a long time we were the only ones there. It was so peaceful and magnificent. Maddie was especially excited because they don’t get much snow at all in Holland, and here she was surrounded by the winter beauty.
We took in the view and then started throwing snowballs over the Falls. I started to make wishes with each snowball I threw- like throwing coins in a fountain. It was magical. We had a great time on our trip and made a lot of lasting memories I’m sure. Once we got home it was almost time for Maddie to leave. I was sad to see her leave, but so grateful that she had been able to come and spend Thanksgiving with us. She also came to my treatments with me during her stay- it was nice to have her company and she was interested in seeing what being a lab rat is really like.
After Maddie left it was already time for the next scan. Scanxiety set in about a week before the scan, as usual. You can’t help but wonder what the next scan will show. Luckily, it was more good news. The second scan showed that everything was still “stable”. And while that is, of course, exciting news, I was hoping that things would start to shrink. My nurse Chelsea said that in the oncology world they consider “stable” to be a win,
To be honest, it doesn’t always feel like a win. I mean, i still have cancer. If I went to a doctor right now with the complaints I have and they did a scan and it showed cancer- would I be feeling grateful about that? Of course not. I would feel panicked and worried. You can’t help but to feel that way. So while I know I should feel grateful that the cancer hasn’t grown, there is still a part of me that wants to have a pity party because, let’s face it, I still have cancer. It’s not gone. And it’s not without symptoms. Unfortunately I still have quite a bit of pain. I have moved up in the medicine world and am now on an extended release Oxycontin and when I have breakthrough pain, which is every day, I take an immediate release Oxycodone. It helps most of the time, but not always.
I was happy, but surprised, about my last scan results. I have had an increase in pain in both my chest and shoulder area. I have come to be very in tune to my body since this all began. I feel like I know when something just isn’t “right”. So when the scan came back with no changes I was surprised. It makes me wonder and worry about why I am having the pain. And do the scans really show everything? How reliable are they?
In December of 2017 I discovered what felt like a lump in my upper left arm. My oncologist at the time wasn’t very concerned, saying it would be “highly unusual” for the breast cancer to spread into a soft tissue cancer. And besides, nothing had shown up on the last scan. I didn’t like that answer, so I went to my primary care doctor. She ordered an ultrasound to get a better look at what was going on. Sure enough, I had soft tissue cancer the size of a golf ball in my upper arm. Once again, I proved how important it is to advocate for yourself and to listen to what your body tells you.
I recently asked my new oncologist about doing an ultrasound on that arm to make sure that cancer isn’t back. She said she doesn’t consider an ultrasound to be a good diagnostic tool for cancer. What? Are we forgetting that it is an ultrasound that found the soft tissue cancer? She also doesn’t want to order a pet scan because any inflammation at all will light up on a pet scan but that doesn’t mean that it’s cancer. The problem I have with the ct scan is that it is of my chest and abdomen, so my arms are placed over my head during the scan. Therefore, the radiologist does not get a good view of my upper arm area. And so it goes.
What is in store for me for 2019? Only time will tell. The thing that relieves my stress the most is taking vacations. Whether it’s just a day or two in South Haven with Kara, Hopps and Zach or a big family trip to Disney- the planning is as much a part of the fun as the trip is. So I will plan fun trips for 2019- including Jack as often as possible! The older he gets the more fun it is to be with him. Kaitlin and Jack came over the other day and he must have said my name a dozen times. He is such a happy and loveable boy. More time with Jack is at the top of my list for 2019. My hope is that next year at this time I can look back at 2019 and call it The Year of Being Stable or, if I’m dreaming big, The Year of the Disappearing Cancer. Until next time, Suz
Out with the old and in with the new. Happy New Year friends. It’s that time of year when I take time to reflect on last year and make plans for the coming year. It’s hard to make plans though when I am living my life on a scan to scan basis. The trial I am on requires a new ct scan every six weeks. When I am fortunate enough to get good scan results I feel like I can finally breathe. But that feeling is short-lived because a few weeks later I am already worrying about the next upcoming scan. It is difficult to throw myself into a feeling of security and surround myself with encouraging vibes when I know the next scan might take it all away. And so I continue to live on a six week time frame.
I’ve only had two scans since I started the trial- they don’t do the first scan until you have been on the trial for three months. My first scan result showed some promising news- the cancer was stable. Nothing new had grown and there were even two cancer spots that had decreased ever so slightly. I celebrated the heck out of that news with everyone! From a waffle breakfast to a much deserved drink with friends. I surrounded myself with happy and encouraging vibes and tried my best to live in that moment and make it last as long as I could.
In November my Dutch “daughter” Maddie came for a visit. Her mom Thea and I became penpals in 1987 and over the years we have become “soul mates”, We’ve gone from one letter a month to texting every day and Facetiming at least once a week. I consider Thea’s family to be my Dutch family. Maddie had a break from medical school and came to spend it with me.
We made the most of our time together. Along with Kara we went to Denver to celebrate Thanksgiving with Ryan and Serena. When we got home we had another Thanksgiving dinner with Kaitlin, Jeremy and Jack. With all the good news from the trial I felt like Thanksgiving was a great reminder of all we have to be thankful for this year.
After Thanksgiving I was able to check something off of my Bucket List- we went on a road trip with my nephew Kenny. I’ve wanted to travel with Kenny for years- he always makes us laugh and is just so much fun to be around. Kenny has been a big help for me during all this cancer time- from taking me for treatments to coming with me for one of my biopsies. He is one person I know I can always count on.
I decided to go to Niagara Falls for our vacation. It is one of my favorite places and I had never been there in the winter. So off we went, Kenny and his new fiancee Krystle, and Maddie and me. None of them had been there before. We arrived at night and ate dinner than went to bed. When we woke up the next day and looked out our window to see the Falls it had transformed into a winter wonderland. It had snowed several inches overnight and the view was breathtaking. We walked to the Falls and for a long time we were the only ones there. It was so peaceful and magnificent. Maddie was especially excited because they don’t get much snow at all in Holland, and here she was surrounded by the winter beauty.
We took in the view and then started throwing snowballs over the Falls. I started to make wishes with each snowball I threw- like throwing coins in a fountain. It was magical. We had a great time on our trip and made a lot of lasting memories I’m sure. Once we got home it was almost time for Maddie to leave. I was sad to see her leave, but so grateful that she had been able to come and spend Thanksgiving with us. She also came to my treatments with me during her stay- it was nice to have her company and she was interested in seeing what being a lab rat is really like.
After Maddie left it was already time for the next scan. Scanxiety set in about a week before the scan, as usual. You can’t help but wonder what the next scan will show. Luckily, it was more good news. The second scan showed that everything was still “stable”. And while that is, of course, exciting news, I was hoping that things would start to shrink. My nurse Chelsea said that in the oncology world they consider “stable” to be a win,
To be honest, it doesn’t always feel like a win. I mean, i still have cancer. If I went to a doctor right now with the complaints I have and they did a scan and it showed cancer- would I be feeling grateful about that? Of course not. I would feel panicked and worried. You can’t help but to feel that way. So while I know I should feel grateful that the cancer hasn’t grown, there is still a part of me that wants to have a pity party because, let’s face it, I still have cancer. It’s not gone. And it’s not without symptoms. Unfortunately I still have quite a bit of pain. I have moved up in the medicine world and am now on an extended release Oxycontin and when I have breakthrough pain, which is every day, I take an immediate release Oxycodone. It helps most of the time, but not always.
I was happy, but surprised, about my last scan results. I have had an increase in pain in both my chest and shoulder area. I have come to be very in tune to my body since this all began. I feel like I know when something just isn’t “right”. So when the scan came back with no changes I was surprised. It makes me wonder and worry about why I am having the pain. And do the scans really show everything? How reliable are they?
In December of 2017 I discovered what felt like a lump in my upper left arm. My oncologist at the time wasn’t very concerned, saying it would be “highly unusual” for the breast cancer to spread into a soft tissue cancer. And besides, nothing had shown up on the last scan. I didn’t like that answer, so I went to my primary care doctor. She ordered an ultrasound to get a better look at what was going on. Sure enough, I had soft tissue cancer the size of a golf ball in my upper arm. Once again, I proved how important it is to advocate for yourself and to listen to what your body tells you.
I recently asked my new oncologist about doing an ultrasound on that arm to make sure that cancer isn’t back. She said she doesn’t consider an ultrasound to be a good diagnostic tool for cancer. What? Are we forgetting that it is an ultrasound that found the soft tissue cancer? She also doesn’t want to order a pet scan because any inflammation at all will light up on a pet scan but that doesn’t mean that it’s cancer. The problem I have with the ct scan is that it is of my chest and abdomen, so my arms are placed over my head during the scan. Therefore, the radiologist does not get a good view of my upper arm area. And so it goes.
What is in store for me for 2019? Only time will tell. The thing that relieves my stress the most is taking vacations. Whether it’s just a day or two in South Haven with Kara, Hopps and Zach or a big family trip to Disney- the planning is as much a part of the fun as the trip is. So I will plan fun trips for 2019- including Jack as often as possible! The older he gets the more fun it is to be with him. Kaitlin and Jack came over the other day and he must have said my name a dozen times. He is such a happy and loveable boy. More time with Jack is at the top of my list for 2019. My hope is that next year at this time I can look back at 2019 and call it The Year of Being Stable or, if I’m dreaming big, The Year of the Disappearing Cancer. Until next time, Suz
September 16, 2018
I ended my last post with the promise to tell the story of my emergency port removal, but so much has happened since than that I’ve decided to just fast forward to where I am at today. And exactly where am I? I am in a Phase 2 Clinical Trial at Rush. The trial is not a chemotherapy, but an immunotherapy that involves taking two different drugs together. One of the drugs is FDA approved for Cancer (but not for breast cancer yet) and the other drug does not yet have FDA approval at all. As you might imagine, a lot of what is happening is experimental.
Probably one of the scariest things about being in a trial is all of the unknowns. Every little thing that happens to my body I report to my research nurse, Chelsea, (who, by the way, is fantastic!). My trial requires weekly infusions. I show up every Friday at 6:45 am and finish anywhere between 4:00-6:00. It’s a brutally long day. One of my favorite parts (if there can be a favorite part) is hearing my treatment nurse Maura read aloud to another nurse what drug they are giving me. It’s a safety precaution they use, but it sounds fun because it starts with ‘Patient Susan Fleharty, 2/6/62, receiving Investigational Drug Imprime PGG….and so on. So, yeah, I’m part of an investigation.
It’s been a bit of a challenge never knowing what new or unusual side effect might suddenly happen. My first infusion went fine, no adverse effects, so I was encouraged. But my hopes were quickly dashed when during the second treatment I had a pretty severe side effect called “rigors”. Rigors are episodes in which your temperature rises quickly while you have severe shivering accompanied by the chills. The fever may be high and the shivering is quite dramatic. It was horrible. My daughter Kaitlin was there and helped talk me through it. It went on for about 20 minutes while 4 nurses were suddenly in my cubicle doing all sorts of things. After a lot of morphine and other drugs it finally stopped.
For my third treatment they decided to give me the drug over six hours instead of three. Well, just two and a half hours into the infusion the rigors returned. Now they give me just half the dose over six hours, and the rigors are gone. Last week at treatment along came a new side effect, an intense burning sensation during the delivery of my pre-meds. It’s always something I guess.
So, what keeps you going Sue?, you ask. How do you show up every time to endure who knows what? Aren’t you sick of feeling like a lab rat? Isn’t it horribly depressing being on a trial because all conventional treatments have failed you? Aren’t you freaking out worrying that the treatment could kill you before the cancer does? Well, yes yes yes to all those questions. What helps me through it all is making plans to do things with my family and friends. When I have a light at the end of my tunnel I feel like it helps me keep going. Besides, I can’t quit yet, I’m not ready to go. So I endure. And I plan. One huge plan that just came to fruition was my family trip to Disney World. My mom took me and the kids lots of times over the years, always staying at the Polynesian. When conventional medicines failed me back in the spring, I made big plans to take my kids to Disney over Labor Day weekend. And let me tell you, it was worth the wait.
We were a party of seven; me, Kaitlin and her husband Jeremy and son Jack, Ryan and his girlfriend Serena (they live in Colorado so I don’t see them often), and Kara. We stayed at the Polynesian and had the best time ever. It was the start of Epcot’s Annual Food and Wine Festival and we all really enjoyed that. I got to introduce Jack to my pal Mickey Mouse among other wonderful things. We spent a lot of quality time together and it has left all of us with many lasting memories.
And at this point in my life, making memories is my number one focus. It has not escaped my notice that it has been 874 days since my Metastatic Cancer was found. That’s 2 years 4 months and 22 days that I have lived with a diagnosis that says the average life span from the time of diagnosis is 2-3 years, a number that has not changed significantly in 20 years. Only about 24% of people diagnosed with Stage IV Breast Cancer are still alive in 5 years. And in case you’re wondering, yes, that scares the shit out of me.
So the trip to Disney was a huge memory maker for me. But I don’t always have to go far to have a magical memory. Today, my grandson Jack was sitting on the floor and looked up at me and said “Gaga”- yep, that’s the Grandma name Kaitlin has been teaching him. And he looked right at me! Even now it makes me teary-eyed. There was a time I didn’t think I would live to see a grandchild, and now he said my name. I’m pretty darn happy. Today was one for the win column. I want to keep capturing memory making moments and if it takes a scary trial to do it, than count me in!
Until next time, Suz
I ended my last post with the promise to tell the story of my emergency port removal, but so much has happened since than that I’ve decided to just fast forward to where I am at today. And exactly where am I? I am in a Phase 2 Clinical Trial at Rush. The trial is not a chemotherapy, but an immunotherapy that involves taking two different drugs together. One of the drugs is FDA approved for Cancer (but not for breast cancer yet) and the other drug does not yet have FDA approval at all. As you might imagine, a lot of what is happening is experimental.
Probably one of the scariest things about being in a trial is all of the unknowns. Every little thing that happens to my body I report to my research nurse, Chelsea, (who, by the way, is fantastic!). My trial requires weekly infusions. I show up every Friday at 6:45 am and finish anywhere between 4:00-6:00. It’s a brutally long day. One of my favorite parts (if there can be a favorite part) is hearing my treatment nurse Maura read aloud to another nurse what drug they are giving me. It’s a safety precaution they use, but it sounds fun because it starts with ‘Patient Susan Fleharty, 2/6/62, receiving Investigational Drug Imprime PGG….and so on. So, yeah, I’m part of an investigation.
It’s been a bit of a challenge never knowing what new or unusual side effect might suddenly happen. My first infusion went fine, no adverse effects, so I was encouraged. But my hopes were quickly dashed when during the second treatment I had a pretty severe side effect called “rigors”. Rigors are episodes in which your temperature rises quickly while you have severe shivering accompanied by the chills. The fever may be high and the shivering is quite dramatic. It was horrible. My daughter Kaitlin was there and helped talk me through it. It went on for about 20 minutes while 4 nurses were suddenly in my cubicle doing all sorts of things. After a lot of morphine and other drugs it finally stopped.
For my third treatment they decided to give me the drug over six hours instead of three. Well, just two and a half hours into the infusion the rigors returned. Now they give me just half the dose over six hours, and the rigors are gone. Last week at treatment along came a new side effect, an intense burning sensation during the delivery of my pre-meds. It’s always something I guess.
So, what keeps you going Sue?, you ask. How do you show up every time to endure who knows what? Aren’t you sick of feeling like a lab rat? Isn’t it horribly depressing being on a trial because all conventional treatments have failed you? Aren’t you freaking out worrying that the treatment could kill you before the cancer does? Well, yes yes yes to all those questions. What helps me through it all is making plans to do things with my family and friends. When I have a light at the end of my tunnel I feel like it helps me keep going. Besides, I can’t quit yet, I’m not ready to go. So I endure. And I plan. One huge plan that just came to fruition was my family trip to Disney World. My mom took me and the kids lots of times over the years, always staying at the Polynesian. When conventional medicines failed me back in the spring, I made big plans to take my kids to Disney over Labor Day weekend. And let me tell you, it was worth the wait.
We were a party of seven; me, Kaitlin and her husband Jeremy and son Jack, Ryan and his girlfriend Serena (they live in Colorado so I don’t see them often), and Kara. We stayed at the Polynesian and had the best time ever. It was the start of Epcot’s Annual Food and Wine Festival and we all really enjoyed that. I got to introduce Jack to my pal Mickey Mouse among other wonderful things. We spent a lot of quality time together and it has left all of us with many lasting memories.
And at this point in my life, making memories is my number one focus. It has not escaped my notice that it has been 874 days since my Metastatic Cancer was found. That’s 2 years 4 months and 22 days that I have lived with a diagnosis that says the average life span from the time of diagnosis is 2-3 years, a number that has not changed significantly in 20 years. Only about 24% of people diagnosed with Stage IV Breast Cancer are still alive in 5 years. And in case you’re wondering, yes, that scares the shit out of me.
So the trip to Disney was a huge memory maker for me. But I don’t always have to go far to have a magical memory. Today, my grandson Jack was sitting on the floor and looked up at me and said “Gaga”- yep, that’s the Grandma name Kaitlin has been teaching him. And he looked right at me! Even now it makes me teary-eyed. There was a time I didn’t think I would live to see a grandchild, and now he said my name. I’m pretty darn happy. Today was one for the win column. I want to keep capturing memory making moments and if it takes a scary trial to do it, than count me in!
Until next time, Suz
July 11, 2018
Greetings friends. So much has happened since I last posted. I feel like I’ve been hiding out the past couple of months just trying to deal with everything. Sometimes I feel better when I share my experiences so that I have people to lean on to help me weather this Cancer storm. Other times I feel like the groundhog who just wants to stay in the hole another six weeks. A friend of mine in one of my Cancer support groups, Joy, died recently and a quote on her Facebook pretty much sums up what I’ve been going through (along with countless others dealing with Cancer)
“Sometimes I’m the mess.
Sometimes I’m the broom.
On the hardest days, I have to be both. ~Rudy Francisco
I feel like my Cancer mess has been all over the place lately and it’s been very tiring trying to clean up after it. It all started a few months ago when my scan showed progression, meaning the chemo I was on once again failed. Since that happened, it has been a whirlwind of activity that I wasn’t ready for. I’m tired of Cancer getting all of my attention. It’s once again become a 24/7 thing in my life, and I resent that. Who does Cancer think it is that it can come into my life and take over? I am sick and tired of feeling sick and tired! That said, my only choice is to push onward. Well, there is the other choice of denying treatment, but it’s not an option i want. Yet.
My next chapter begins with my new and improved oncologist, Dr. April Swoboda. She’s young, smart, and excited to take me on. I’ve never met anyone who has been as excited about my triple breast negative cancer before. She could barely contain her excitement at my first visit. TNBC is her specialty and she has lots of ideas and options for my treatment. She was shocked and appalled when I told her how my last oncologist said I was out of options. She apologized for the way I was treated by the other doctor. She said she will never give up on me and won’t stop trying new things until I say it’s time.
Another thing I really like about Dr. April is when she said how she doesn’t like when people use all the “fighting” terminology about Cancer. She said it makes it sound as if the patient is somehow responsible for the outcome. That if I don’t “fight hard enough” it’s on me if I die. And choosing to stop treatment is not “giving up”. She said “getting up and out of bed each day is already a win. Just showing up is a win.” I feel like Dr. April is treating me as a person, not just my Cancer.
I told Dr.April that my last oncologist said it was to late for me to do a clinical trial, that it wasn’t an option for me. Once again she was appalled. She said it’s never to late for a clinical trial, and went on to talk about two trials at Rush that I was qualified for. I was surprised that she knew on my first visit about what trial I would qualify for. Then I realized that Dr. April did something very unique- she had actually looked at my chart and my history before she even met me! Well there’s a novel idea-don’t wait until you walk in the exam room to look at a patient’s chart! Yes, my sarcasm meter is going off- if you all remember, my last oncologist never read my chart or my test results until she walked into the exam room. I knew then that Dr. April was in my corner.
The first thing she ordered was a new biopsy. She explained that Cancer can change over time and I would need a new biopsy to confirm that I could be in the trial. The new biopsy would be done on one of the new tumors in my left arm area instead of the more difficult to get to tumors in my lung. When she looked at my most recent blood work she noticed that my liver enzymes were high. I said that they have been high for the last year. She asked if I drink much (haha- nope!) and if I take tylenol at all. I said I take Norco four or five times a day for pain and I know Norco has acetaminophen in it. She was surprised my doctor would keep giving me Norco since my liver enzymes were high. She said if my enzymes were too high i wouldn’t be able to get in the trial. So she changed my painkiller to oxycodone and off I went. And that’s when I hopped on the next Cancerland roller-coaster.
When I dropped the prescription off at my new favorite pharmacy, Mariano’s, I found out my insurance denied the claim. Apparently my insurance wanted me to try 4 other drugs before they would approve the oxycodone. Dr. April had warned me this might happen and so I went home and called her office. Luckily for me, I had actually already tried 3 of the 4 drugs the insurance wanted me to try. All that was left for me to try was a Fentanyl patch. Dr.April had said that she didn’t really like the Fentanyl patch for me, but her hands were tied. She said how frustrating it is to have to make medical decisions based on insurance rather than what’s best for the patient.
When I talked to Dr. April’s nurse she said because of the class drug Fentanyl is she wasn’t allowed to send it electronically to the pharmacy, that I would need a hard copy. She said she would overnight it to me. In the meantime just take the Norco since it was all i had. The next day I received the prescription and went to Mariano’s and got the Fentanyl patch. It takes between 24-48 hours for the patch to work once it is applied. So for the next two days I had to continue using the Norco.
Well, as luck would have it, my body didn’t like Fentanyl. At first I thought, maybe I have the flu and it’s just a coincidence that it’s the same time as when I started the Fentanyl. It’s funny what you can try to convince yourself of when you’re desperate. For the next ten days I had flu-like symptoms and spent most of the time on my couch. It reminded me, in the worst way possible, of my first Cancer adventure, circa 2014. Laying on the couch feeling to nauseous to read or watch tv. On day eleven I called my favorite new pharmacist, Barb, and told her what was going on. She said to take the patch off immediately and call your doctor. I did, and the doctor said the good news was that now that I failed Fentanyl I would be able to get the oxycodone. The bad news was that the Fentanyl would stay in my system for another 48 hours. Of course. Why would I be surprised?
Next up is the biopsy experience. For you faithful readers who have been with me from the start, you may recall the horrible and painful botched biopsy of 2017. (Souvenir "I survived a Botched Biopsy 2017" t-shirts sold out online in just 15 minutes!) Well, this time was no different. New surgeon, new hospital, same old problem. I think people with Cancer should get to teach just one seminar to medical students called “How to treat a Cancer patient without inflicting pain (and other myths and legends.)” Or better yet, perhaps every aspiring doctor should have to experience the tests and procedures first hand. Maybe then they would realize that NO means NO and STOP means STOP. It doesn’t mean, “Oh well, it’s just one more fill-in-the-blank (shot, stick, cut, stitch….) so I will ignore your whimpering in pain request."
At the start of this biopsy I told the very first nurse I met The Story about my previous experience and how they didn’t give me enough numbing medication and so I felt them taking samples of my tumor tissue. And it was horrific. She gasped in all the appropriate spots while I told my tale. In walks Nurse #2 and before I could even start The Story, the first nurse told her all about it. Nurse #2 was also appalled that this happened to me. In walks ...dum-dum-dum...The Surgeon. (Now everyone should please take a moment to bow and fully appreciate this God-like being who has entered the room...again, my sarcasm meter is going wild).
Nurse #1, who clearly felt it was her obligation at this point to relay The Story, proceeded to tell the surgeon my tale of horror. The Surgeon reacted with compassion and promised nothing like that would happen today. She promised to make this procedure “as pain free as possible”, guaranteeing me that the only thing I would feel was the first shot they use to numb the area. I explained that last time it took more medicine than usual to numb me and she promised she understood. No worries, she said. Hmmmm..when have I heard that before?
The next sound heard in the room was the sickening clicking noise the tool makes when it cuts out a piece of your tumor, quickly followed by my screaming and bursting into tears. I was so pissed for so many reasons. I said “STOP, I can obviously feel what you’re doing.” The Surgeon tried to pull a quick sleight of hand trick on me by directing me to look at the screen and watch the ultrasound and how the tool was getting to the tumor. Was that meant to calm me down??? Both of the nurses looked upset and Nurse #1 kept stroking my hand while Nurse #2 said “I can’t stand next to you but I am here at the foot of the bed stroking your leg Susan.” Again, why would I want to know this? Do these nurses have magical healing hands that will numb the pain being inflicted by the doctor??? The Surgeon, of course, ignored me and clipped another piece of tissue.
Again I gasped and said “You need to STOP.” To which her reply was “just one more sample and we can be all done” CLICK! SCREAM! The Surgeon has left the building (Elvis style). She leaves behind a crying patient in pain and two befuddled, compassionate nurses. Oh wait, I forgot to mention, on her way out of the room she left this parting message “Next time you have a biopsy done you should let the doctor know ahead of time that you have a high tolerance for medication and need more than the usual patient” and the door closes. Did this really just happen?
I plan to write a letter about my experience to whoever is in charge of that department after I’ve had some time to calm down and compose a letter that isn’t just pure emotion. I feel that I am a very strong advocate for myself, so it’s disheartening when things like this happen. Why didn’t my saying STOP mean anything in the operating room? When did it become acceptable for a doctor to blatantly disregard the wishes of the patient? This has happened to me twice now and I am angry and confused as to why this continues. I would go right into my next story, all about my emergency port removal, but I think I will end today’s post with that as a cliffhanger. Until next time, Sue
Greetings friends. So much has happened since I last posted. I feel like I’ve been hiding out the past couple of months just trying to deal with everything. Sometimes I feel better when I share my experiences so that I have people to lean on to help me weather this Cancer storm. Other times I feel like the groundhog who just wants to stay in the hole another six weeks. A friend of mine in one of my Cancer support groups, Joy, died recently and a quote on her Facebook pretty much sums up what I’ve been going through (along with countless others dealing with Cancer)
“Sometimes I’m the mess.
Sometimes I’m the broom.
On the hardest days, I have to be both. ~Rudy Francisco
I feel like my Cancer mess has been all over the place lately and it’s been very tiring trying to clean up after it. It all started a few months ago when my scan showed progression, meaning the chemo I was on once again failed. Since that happened, it has been a whirlwind of activity that I wasn’t ready for. I’m tired of Cancer getting all of my attention. It’s once again become a 24/7 thing in my life, and I resent that. Who does Cancer think it is that it can come into my life and take over? I am sick and tired of feeling sick and tired! That said, my only choice is to push onward. Well, there is the other choice of denying treatment, but it’s not an option i want. Yet.
My next chapter begins with my new and improved oncologist, Dr. April Swoboda. She’s young, smart, and excited to take me on. I’ve never met anyone who has been as excited about my triple breast negative cancer before. She could barely contain her excitement at my first visit. TNBC is her specialty and she has lots of ideas and options for my treatment. She was shocked and appalled when I told her how my last oncologist said I was out of options. She apologized for the way I was treated by the other doctor. She said she will never give up on me and won’t stop trying new things until I say it’s time.
Another thing I really like about Dr. April is when she said how she doesn’t like when people use all the “fighting” terminology about Cancer. She said it makes it sound as if the patient is somehow responsible for the outcome. That if I don’t “fight hard enough” it’s on me if I die. And choosing to stop treatment is not “giving up”. She said “getting up and out of bed each day is already a win. Just showing up is a win.” I feel like Dr. April is treating me as a person, not just my Cancer.
I told Dr.April that my last oncologist said it was to late for me to do a clinical trial, that it wasn’t an option for me. Once again she was appalled. She said it’s never to late for a clinical trial, and went on to talk about two trials at Rush that I was qualified for. I was surprised that she knew on my first visit about what trial I would qualify for. Then I realized that Dr. April did something very unique- she had actually looked at my chart and my history before she even met me! Well there’s a novel idea-don’t wait until you walk in the exam room to look at a patient’s chart! Yes, my sarcasm meter is going off- if you all remember, my last oncologist never read my chart or my test results until she walked into the exam room. I knew then that Dr. April was in my corner.
The first thing she ordered was a new biopsy. She explained that Cancer can change over time and I would need a new biopsy to confirm that I could be in the trial. The new biopsy would be done on one of the new tumors in my left arm area instead of the more difficult to get to tumors in my lung. When she looked at my most recent blood work she noticed that my liver enzymes were high. I said that they have been high for the last year. She asked if I drink much (haha- nope!) and if I take tylenol at all. I said I take Norco four or five times a day for pain and I know Norco has acetaminophen in it. She was surprised my doctor would keep giving me Norco since my liver enzymes were high. She said if my enzymes were too high i wouldn’t be able to get in the trial. So she changed my painkiller to oxycodone and off I went. And that’s when I hopped on the next Cancerland roller-coaster.
When I dropped the prescription off at my new favorite pharmacy, Mariano’s, I found out my insurance denied the claim. Apparently my insurance wanted me to try 4 other drugs before they would approve the oxycodone. Dr. April had warned me this might happen and so I went home and called her office. Luckily for me, I had actually already tried 3 of the 4 drugs the insurance wanted me to try. All that was left for me to try was a Fentanyl patch. Dr.April had said that she didn’t really like the Fentanyl patch for me, but her hands were tied. She said how frustrating it is to have to make medical decisions based on insurance rather than what’s best for the patient.
When I talked to Dr. April’s nurse she said because of the class drug Fentanyl is she wasn’t allowed to send it electronically to the pharmacy, that I would need a hard copy. She said she would overnight it to me. In the meantime just take the Norco since it was all i had. The next day I received the prescription and went to Mariano’s and got the Fentanyl patch. It takes between 24-48 hours for the patch to work once it is applied. So for the next two days I had to continue using the Norco.
Well, as luck would have it, my body didn’t like Fentanyl. At first I thought, maybe I have the flu and it’s just a coincidence that it’s the same time as when I started the Fentanyl. It’s funny what you can try to convince yourself of when you’re desperate. For the next ten days I had flu-like symptoms and spent most of the time on my couch. It reminded me, in the worst way possible, of my first Cancer adventure, circa 2014. Laying on the couch feeling to nauseous to read or watch tv. On day eleven I called my favorite new pharmacist, Barb, and told her what was going on. She said to take the patch off immediately and call your doctor. I did, and the doctor said the good news was that now that I failed Fentanyl I would be able to get the oxycodone. The bad news was that the Fentanyl would stay in my system for another 48 hours. Of course. Why would I be surprised?
Next up is the biopsy experience. For you faithful readers who have been with me from the start, you may recall the horrible and painful botched biopsy of 2017. (Souvenir "I survived a Botched Biopsy 2017" t-shirts sold out online in just 15 minutes!) Well, this time was no different. New surgeon, new hospital, same old problem. I think people with Cancer should get to teach just one seminar to medical students called “How to treat a Cancer patient without inflicting pain (and other myths and legends.)” Or better yet, perhaps every aspiring doctor should have to experience the tests and procedures first hand. Maybe then they would realize that NO means NO and STOP means STOP. It doesn’t mean, “Oh well, it’s just one more fill-in-the-blank (shot, stick, cut, stitch….) so I will ignore your whimpering in pain request."
At the start of this biopsy I told the very first nurse I met The Story about my previous experience and how they didn’t give me enough numbing medication and so I felt them taking samples of my tumor tissue. And it was horrific. She gasped in all the appropriate spots while I told my tale. In walks Nurse #2 and before I could even start The Story, the first nurse told her all about it. Nurse #2 was also appalled that this happened to me. In walks ...dum-dum-dum...The Surgeon. (Now everyone should please take a moment to bow and fully appreciate this God-like being who has entered the room...again, my sarcasm meter is going wild).
Nurse #1, who clearly felt it was her obligation at this point to relay The Story, proceeded to tell the surgeon my tale of horror. The Surgeon reacted with compassion and promised nothing like that would happen today. She promised to make this procedure “as pain free as possible”, guaranteeing me that the only thing I would feel was the first shot they use to numb the area. I explained that last time it took more medicine than usual to numb me and she promised she understood. No worries, she said. Hmmmm..when have I heard that before?
The next sound heard in the room was the sickening clicking noise the tool makes when it cuts out a piece of your tumor, quickly followed by my screaming and bursting into tears. I was so pissed for so many reasons. I said “STOP, I can obviously feel what you’re doing.” The Surgeon tried to pull a quick sleight of hand trick on me by directing me to look at the screen and watch the ultrasound and how the tool was getting to the tumor. Was that meant to calm me down??? Both of the nurses looked upset and Nurse #1 kept stroking my hand while Nurse #2 said “I can’t stand next to you but I am here at the foot of the bed stroking your leg Susan.” Again, why would I want to know this? Do these nurses have magical healing hands that will numb the pain being inflicted by the doctor??? The Surgeon, of course, ignored me and clipped another piece of tissue.
Again I gasped and said “You need to STOP.” To which her reply was “just one more sample and we can be all done” CLICK! SCREAM! The Surgeon has left the building (Elvis style). She leaves behind a crying patient in pain and two befuddled, compassionate nurses. Oh wait, I forgot to mention, on her way out of the room she left this parting message “Next time you have a biopsy done you should let the doctor know ahead of time that you have a high tolerance for medication and need more than the usual patient” and the door closes. Did this really just happen?
I plan to write a letter about my experience to whoever is in charge of that department after I’ve had some time to calm down and compose a letter that isn’t just pure emotion. I feel that I am a very strong advocate for myself, so it’s disheartening when things like this happen. Why didn’t my saying STOP mean anything in the operating room? When did it become acceptable for a doctor to blatantly disregard the wishes of the patient? This has happened to me twice now and I am angry and confused as to why this continues. I would go right into my next story, all about my emergency port removal, but I think I will end today’s post with that as a cliffhanger. Until next time, Sue
May 17, 2018
It’s been a tough couple of weeks for a variety of reasons. First, I’ve lost 5 friends (so far) in just the last month to MBC. I will pause a minute so that can sink in. Five friends in one month. Five people I can no longer talk to in the middle of the night when neither of us can sleep. Five friends that I use to compare Cancer crap with that are now gone. Five. I’m sad and angry at the same time. Sad that so many people that I have come to know and love are gone now. Angry that MBC is not getting the research money it needs to make this disease survivable. As I’ve said many times, Pink is not a cure. Buying pink ribbon items won’t make my life any longer. The money needs to go to research, not awareness. Unless you’ve been living under a rock for the past 20 years, you are aware of breast cancer. Please consider donating directly to an organization like Metavivor, where all the money raised goes directly to research. And now I will step down from that soapbox.
After taking a few weeks to lick my wounds from that fateful doctor visit where all the bad news was delivered, I’ve taken some time to regroup. Time to think about all that is happening and what exactly I can do about it. Obviously I can’t do anything about the actual Cancer, but I can choose how I react to it and how I decide to deal with it. And so, I’m ready to kick some ass and take charge. Or as my friend Zach likes to say, “Suzy’s gonna crack that whip!”
And so it will start with a new oncologist. The more I thought about what my oncologist said the more angry I got. Maybe in the end she will be proved right, I just don’t know. Maybe there is no clinical trial that will prolong my life, but who can say that for sure? I wanted to know the truth- but sometimes I feel like what I get is the doctor’s truth and that can be different than mine. I am not going to give up just because one doctor says there is nothing else that can be done. And if, in the end, there is nothing else to be done, well at least I tried. At least I’m going out fighting.
After much research I found a new oncologist and am waiting to hear back from the office to make sure they will take me. I’m keeping my fingers crossed. The new (and improved?) doctor is at Rush Hospital. She specializes in triple negative breast cancer, which is mine, and she has published several papers on metastatic breast cancer. Her medical degree is from Brown University- an Ivy League school. So right away I am feeling encouraged. This is someone who knows her stuff, and more importantly, knows my stuff.
As for clinical trials- remember how my current oncologist said I wouldn’t qualify and there wasn’t anything out there to help me at this point? Well my MBC online support group “sisters” came to the rescue on that subject. It turns out there are lots of clinical trials out there that I qualify for. They may or may not help, but I’ve got choices. And more important than having choices is having Hope. Something I have had very little of in the past few years.
I’m not going to sugarcoat my situation and suddenly say everything is sunshine and rainbows. It’s not. It’s still ugly and hard and often scares the shit out of me. I still lay awake many nights wondering what it will be like when I die. “When” being the hardest part. But I feel like I’ve come through a really dark and low point and am gearing up for the fight. The Winter was gloomy inside and out for me. But, as they say, Hope springs eternal and the Spring season has helped me feel better. I'm sure there will be other low points, but that’s life. Everyone has low points, mine are just always centered on the same ugly topic of Cancer. Summer is just around the corner, and with any luck, so is a new chapter in my Cancer adventure. A chapter that I hope will be filled with Hope and Healing. Until next time, Sue
It’s been a tough couple of weeks for a variety of reasons. First, I’ve lost 5 friends (so far) in just the last month to MBC. I will pause a minute so that can sink in. Five friends in one month. Five people I can no longer talk to in the middle of the night when neither of us can sleep. Five friends that I use to compare Cancer crap with that are now gone. Five. I’m sad and angry at the same time. Sad that so many people that I have come to know and love are gone now. Angry that MBC is not getting the research money it needs to make this disease survivable. As I’ve said many times, Pink is not a cure. Buying pink ribbon items won’t make my life any longer. The money needs to go to research, not awareness. Unless you’ve been living under a rock for the past 20 years, you are aware of breast cancer. Please consider donating directly to an organization like Metavivor, where all the money raised goes directly to research. And now I will step down from that soapbox.
After taking a few weeks to lick my wounds from that fateful doctor visit where all the bad news was delivered, I’ve taken some time to regroup. Time to think about all that is happening and what exactly I can do about it. Obviously I can’t do anything about the actual Cancer, but I can choose how I react to it and how I decide to deal with it. And so, I’m ready to kick some ass and take charge. Or as my friend Zach likes to say, “Suzy’s gonna crack that whip!”
And so it will start with a new oncologist. The more I thought about what my oncologist said the more angry I got. Maybe in the end she will be proved right, I just don’t know. Maybe there is no clinical trial that will prolong my life, but who can say that for sure? I wanted to know the truth- but sometimes I feel like what I get is the doctor’s truth and that can be different than mine. I am not going to give up just because one doctor says there is nothing else that can be done. And if, in the end, there is nothing else to be done, well at least I tried. At least I’m going out fighting.
After much research I found a new oncologist and am waiting to hear back from the office to make sure they will take me. I’m keeping my fingers crossed. The new (and improved?) doctor is at Rush Hospital. She specializes in triple negative breast cancer, which is mine, and she has published several papers on metastatic breast cancer. Her medical degree is from Brown University- an Ivy League school. So right away I am feeling encouraged. This is someone who knows her stuff, and more importantly, knows my stuff.
As for clinical trials- remember how my current oncologist said I wouldn’t qualify and there wasn’t anything out there to help me at this point? Well my MBC online support group “sisters” came to the rescue on that subject. It turns out there are lots of clinical trials out there that I qualify for. They may or may not help, but I’ve got choices. And more important than having choices is having Hope. Something I have had very little of in the past few years.
I’m not going to sugarcoat my situation and suddenly say everything is sunshine and rainbows. It’s not. It’s still ugly and hard and often scares the shit out of me. I still lay awake many nights wondering what it will be like when I die. “When” being the hardest part. But I feel like I’ve come through a really dark and low point and am gearing up for the fight. The Winter was gloomy inside and out for me. But, as they say, Hope springs eternal and the Spring season has helped me feel better. I'm sure there will be other low points, but that’s life. Everyone has low points, mine are just always centered on the same ugly topic of Cancer. Summer is just around the corner, and with any luck, so is a new chapter in my Cancer adventure. A chapter that I hope will be filled with Hope and Healing. Until next time, Sue
Update- I planned to post this blog before my most recent hospital stay- so here is this one, and I'll be working on a new one in the next few days.
April 7, 2018
Remember that verse from Alice in Wonderland that said “"The time has come," the Walrus said,"To talk of many things: Of shoes--and ships--and sealing-wax--Of cabbages--and kings--And why the sea is boiling hot--And whether pigs have wings.?” Well for some reason I seem to compare my trip through Cancerland to Alice’s trip down the rabbit hole. It’s all about facing the unknown, and the unknown can often be dark and scary. And so now the time has come for me to talk of many things- many scary Cancer things in my life.
The past two weeks I have been pushed and pulled through that dark rabbit hole in ways I could not even imagine. One of the tricky things about this whole Cancer adventure is that it is so very unpredictable. You can go from the highest high to the lowest low in just a few hours. And right now, I am at the lowest low. Here’s what has happened since I last wrote.
After I was released from Loyola Hospital I went home and took it easy for a few days as instructed. I didn’t want to do anything that might aggravate Ruby, the blood clot. It’s weird having a blood clot because you don’t know what’s happening to it. Is it getting smaller? Or is it growing? I can’t feel it, so there is no easy way to know what’s going on. My doctor said if my shortness of breath stays away than that means the clot is probably getting smaller, or at least not growing. So on Thursday, 5 days after being released, I went for my next round of Navelbine chemo. Kara was on spring break so she came with me. What happens next should be marked “viewer discretion is advised”. Or maybe “reader discretion’? Either way, you get what I mean.
Dr. Gaynor went over the results from the Cat scan I had in the hospital. I wasn’t expecting any surprises as I thought she had already told me everything. Imagine my surprise when suddenly I hear her saying “Unfortunately it’s time for us to talk about the gravity of your situation.” WAIT! WHAT? Slow down- say that again. She went on to explain that I had asked her to be honest even with the tough things, so now is time for the tough things. She said I have a lot of “junk” going on in my right lung, between the Zombie Peach, and now Ruby, and generally, just more junk. The upper part of my lung was no longer inflating properly and then she started to throw out some words I didn’t understand, which is unusual because I feel like I am very well read about all this Cancer stuff.
I remember saying things like “wait, I thought things were ok. I thought you said the blood clot didn’t affect my overall prognosis.” She went on to explain that the chemo I am on now, Navelbine, is my cue ominous music- last chance chemo. There are no more chemos left for me to try after Navelbine. She’s concerned that I may continue to develop blood clots, which can be dangerous. I jumped right in with “What about clinical trials? I thought we always saved those for the last ditch effort??” She said she was sorry to say this, but because I have tried so many types of chemo I no longer qualify for a clinical trial. WHAT? I felt like this was spinning out of control now. She said I could have a Phase 1 trial, but that wouldn’t help me at all and blah blah blah.
I started to cry. I was trying so hard not to cry since Kara was there. In the past I have been pretty lucky to have been alone when I have received bad news. I like it better when I’m alone because it gives me time to have a good, ugly cry before I see my kids. That way by the time I see the kids I am more composed.
I heard my voice asking the question I said I would never ask, but I did. “Well do you think it’s possible I can still have maybe five years??” Then came the sad head shake and the “No, I’m sorry” answer from the doctor. She went on to point out that I need to realize I’ve already had some longevity since diagnosis. When I was diagnosed on April 25, 2016 with Metastatic Breast Cancer, the doctor said the average length of life from that point on is between 18-36 months. And look at me now, I’m approaching the two year point! Look how good I’ve done making it this far. Somewhere during her impromptu “pep talk” I started to shut down and cry again. She handed me the tissue box and said take your time before you come out for chemo. And now nothing will ever be the same. Now everything will be forever labeled as before or after I knew my time was running out.
At some point Kara and I got up and left the office and went to the chemo bay. The nurse worked quietly hooking me up to everything and chemo started. Kara started looking up train trips we could take, since we don’t know when or if I will be able to fly again. I’ve always wanted to take a train trip where you get to sleep in one of those cool sleeper cars. It always reminds me of that scene from my favorite movie, White Christmas.
When we got home I texted Kaitlin and Ryan the bad news and said I was going to lay down and was shutting off my phone. When I woke up Kara was still here and she had arranged for Kaitlin and Ryan to both come over after work. It was a really sad night. It’s hard to find hope in that moment. We talked, we cried, we made plans, we just sat there being us. Kaitlin asked if there was anything on my bucket list still so that we can get going on that. We briefly discussed legal things like my will and my DNR. We touched on a memorial service. Like I said, it was a sad night. Kaitlin spent the night, with Jack!, and that was wonderful.
As I laid in bed that night I just couldn’t sleep. So many things were racing through my mind, and all of them sad. I wished I could focus on the good things, like having a grandson, and having three great kids. But in that low, dark moment all I could think of was all the things I would be missing. All of the things I wouldn’t have time to do or see.
I’ve cried every day since that doctor visit. I am not ready, or willing, to die yet. But it’s not up to me. All I can do is keep on trying and praying for that miracle. I’ve been spending a lot of time planning some things I want to do before I get to sick to do them. They all end up being vacation things, because for me that is the time I feel our family is closest to one another.
I had a dream my whole adult life of buying a lake house. I really wanted a lake house so my kids would keep seeing each other often and their kids would grow up being close to their cousins. Hanging at the beach, playing in the water, eating dinner on the deck watching the sunset over the lake. That’s a dream I have to let go of now. There just isn’t going to be enough time for me to do all I have left to do. Ryan suggested I rent a lake house this summer for a month so that all my family and friends could all come and hang out and have a great summer together. I love this idea, so I’ve started looking into it. I don’t want it to be to far away as I will still have to come home for chemo. Hopefully by my next blog I can share with you that I’ve found the perfect place. (If you know of the perfect place within two hours of Chicago please let me know!)
I wish I could wake up like Alice did and find out this has all been a bad dream. But that's just not going to happen. My faith lets me believe that I will "wake up" from this life into a new life- a life in Heaven with so many people who have gone before me. I try to find comfort in that, but right now, it's just tough. I appreciate all the prayers and love you send me. I truly hope my blog helps people. It gives me some satisfaction to be using the Cancer in a positive way. Thanks for being my “tribe”. Until next time, Suz
April 7, 2018
Remember that verse from Alice in Wonderland that said “"The time has come," the Walrus said,"To talk of many things: Of shoes--and ships--and sealing-wax--Of cabbages--and kings--And why the sea is boiling hot--And whether pigs have wings.?” Well for some reason I seem to compare my trip through Cancerland to Alice’s trip down the rabbit hole. It’s all about facing the unknown, and the unknown can often be dark and scary. And so now the time has come for me to talk of many things- many scary Cancer things in my life.
The past two weeks I have been pushed and pulled through that dark rabbit hole in ways I could not even imagine. One of the tricky things about this whole Cancer adventure is that it is so very unpredictable. You can go from the highest high to the lowest low in just a few hours. And right now, I am at the lowest low. Here’s what has happened since I last wrote.
After I was released from Loyola Hospital I went home and took it easy for a few days as instructed. I didn’t want to do anything that might aggravate Ruby, the blood clot. It’s weird having a blood clot because you don’t know what’s happening to it. Is it getting smaller? Or is it growing? I can’t feel it, so there is no easy way to know what’s going on. My doctor said if my shortness of breath stays away than that means the clot is probably getting smaller, or at least not growing. So on Thursday, 5 days after being released, I went for my next round of Navelbine chemo. Kara was on spring break so she came with me. What happens next should be marked “viewer discretion is advised”. Or maybe “reader discretion’? Either way, you get what I mean.
Dr. Gaynor went over the results from the Cat scan I had in the hospital. I wasn’t expecting any surprises as I thought she had already told me everything. Imagine my surprise when suddenly I hear her saying “Unfortunately it’s time for us to talk about the gravity of your situation.” WAIT! WHAT? Slow down- say that again. She went on to explain that I had asked her to be honest even with the tough things, so now is time for the tough things. She said I have a lot of “junk” going on in my right lung, between the Zombie Peach, and now Ruby, and generally, just more junk. The upper part of my lung was no longer inflating properly and then she started to throw out some words I didn’t understand, which is unusual because I feel like I am very well read about all this Cancer stuff.
I remember saying things like “wait, I thought things were ok. I thought you said the blood clot didn’t affect my overall prognosis.” She went on to explain that the chemo I am on now, Navelbine, is my cue ominous music- last chance chemo. There are no more chemos left for me to try after Navelbine. She’s concerned that I may continue to develop blood clots, which can be dangerous. I jumped right in with “What about clinical trials? I thought we always saved those for the last ditch effort??” She said she was sorry to say this, but because I have tried so many types of chemo I no longer qualify for a clinical trial. WHAT? I felt like this was spinning out of control now. She said I could have a Phase 1 trial, but that wouldn’t help me at all and blah blah blah.
I started to cry. I was trying so hard not to cry since Kara was there. In the past I have been pretty lucky to have been alone when I have received bad news. I like it better when I’m alone because it gives me time to have a good, ugly cry before I see my kids. That way by the time I see the kids I am more composed.
I heard my voice asking the question I said I would never ask, but I did. “Well do you think it’s possible I can still have maybe five years??” Then came the sad head shake and the “No, I’m sorry” answer from the doctor. She went on to point out that I need to realize I’ve already had some longevity since diagnosis. When I was diagnosed on April 25, 2016 with Metastatic Breast Cancer, the doctor said the average length of life from that point on is between 18-36 months. And look at me now, I’m approaching the two year point! Look how good I’ve done making it this far. Somewhere during her impromptu “pep talk” I started to shut down and cry again. She handed me the tissue box and said take your time before you come out for chemo. And now nothing will ever be the same. Now everything will be forever labeled as before or after I knew my time was running out.
At some point Kara and I got up and left the office and went to the chemo bay. The nurse worked quietly hooking me up to everything and chemo started. Kara started looking up train trips we could take, since we don’t know when or if I will be able to fly again. I’ve always wanted to take a train trip where you get to sleep in one of those cool sleeper cars. It always reminds me of that scene from my favorite movie, White Christmas.
When we got home I texted Kaitlin and Ryan the bad news and said I was going to lay down and was shutting off my phone. When I woke up Kara was still here and she had arranged for Kaitlin and Ryan to both come over after work. It was a really sad night. It’s hard to find hope in that moment. We talked, we cried, we made plans, we just sat there being us. Kaitlin asked if there was anything on my bucket list still so that we can get going on that. We briefly discussed legal things like my will and my DNR. We touched on a memorial service. Like I said, it was a sad night. Kaitlin spent the night, with Jack!, and that was wonderful.
As I laid in bed that night I just couldn’t sleep. So many things were racing through my mind, and all of them sad. I wished I could focus on the good things, like having a grandson, and having three great kids. But in that low, dark moment all I could think of was all the things I would be missing. All of the things I wouldn’t have time to do or see.
I’ve cried every day since that doctor visit. I am not ready, or willing, to die yet. But it’s not up to me. All I can do is keep on trying and praying for that miracle. I’ve been spending a lot of time planning some things I want to do before I get to sick to do them. They all end up being vacation things, because for me that is the time I feel our family is closest to one another.
I had a dream my whole adult life of buying a lake house. I really wanted a lake house so my kids would keep seeing each other often and their kids would grow up being close to their cousins. Hanging at the beach, playing in the water, eating dinner on the deck watching the sunset over the lake. That’s a dream I have to let go of now. There just isn’t going to be enough time for me to do all I have left to do. Ryan suggested I rent a lake house this summer for a month so that all my family and friends could all come and hang out and have a great summer together. I love this idea, so I’ve started looking into it. I don’t want it to be to far away as I will still have to come home for chemo. Hopefully by my next blog I can share with you that I’ve found the perfect place. (If you know of the perfect place within two hours of Chicago please let me know!)
I wish I could wake up like Alice did and find out this has all been a bad dream. But that's just not going to happen. My faith lets me believe that I will "wake up" from this life into a new life- a life in Heaven with so many people who have gone before me. I try to find comfort in that, but right now, it's just tough. I appreciate all the prayers and love you send me. I truly hope my blog helps people. It gives me some satisfaction to be using the Cancer in a positive way. Thanks for being my “tribe”. Until next time, Suz
March 26, 2018
Well, I went ahead and tried the third Navelbine treatment and luckily there were no extreme side effects. Yet. I say yet because the last time I had the extreme side effects it was after I had the Navelbine two weeks in a row. So having just the first week of the Navelbine didn’t mean I was in the clear yet. I was only a day away from receiving the fourth dose when a new and unexpected problem appeared. For a couple of days I was feeling more chest pain than usual and was short of breath. I tried to ignore it and hoped it was no big deal. But after a quick trip to Target with Kara, I could tell something was brewing. By the time I walked from the parking spot to the escalator I was out of breath. Not a good sign. The next morning I called my oncologist and she said to go immediately to the ER to rule out a pulmonary embolism, which could be serious. So off Kara and I went to Loyola hospital, home of my oncologist.
The ER was crowded, but when I checked in I asked if I could be put in a more private space as I have Stage 4 Cancer and a very compromised immune system. The girl at the sign in desk brought me a wheelchair and positioned me about five feet away from the check in desk. Not quite the germ free area I hoped for. And so I sat with my mask on and waited. The triage nurse called my name fairly quickly and when I told her why I was there I jumped to the front of the line and she took me into a private ER room. There was a flurry of activity as tests were quickly ordered and performed. In no time at all the doctor came to tell us that “it appears you have a blood clot in your lung.” He went on to explain that one of two things would happen next. Either they would start me on a blood thinner or they would need to perform surgery to remove the clot. It was a pretty scary diagnosis. The doctor said the blood thinning medicine does not actually break up the clot that is already there, but rather it keeps it from getting bigger and keeps new clots from forming. I asked about medicine to break up the clot itself, but was told there was none, that it would just take time for my body to naturally break up the clot. It could be a few weeks, or a few months. They admitted me to the Oncology floor to keep an eye on me for the night.
Four days later I came home. Apparently with the clot still in place. One thing I have come to realize these past few years is that medical things seldom go the way I think they logically should. I expected when they admitted me and started the medicines that they would do another scan before discharging me to make sure the clot didn’t continue to grow. Also, in my case, they were concerned about the location of the clot. It is close to my airway and could pose a problem. It was decided that surgery would be tricky due to the fact that the old, dead tumor (fondly called the “peach”) was still encased by the main chest artery, and somewhere in that whole mess was this new blood clot. The new, not easily removable blood clot, fondly named Ruby. But often there is no logic to the practice of medicine. I was sent home and “taught” how to give myself an injection in my stomach of the blood thinner for the next six weeks. Here you go, good luck, farewell, call if you have a question, read the pamphlet, watch the how to dvd, you can do it! I sat on the edge of the bed and told my oncologist that I was scared. Nervous. Didn’t feel confident in this plan. You’re sending me home in the same condition I was in when I got here- well almost. The shortness of breath was better, so the doctor assured me that was a positive sign. She had every faith in me. Call if you need us. Oh, and we will start the chemo back up next week. Goodbye! And out walked my oncologist and the two residents. I watched them gown up to go into the next room to see the next patient. I sat on the edge of the bed pondering my fate. Isn’t it enough that I have to deal with Cancer? Why do I also have to get a stupid blood clot? How unfair is this? I was not in a good mind set. I was angry at both Peach and Ruby.
And than, an amazing thing happened. About ten minutes later my oncologist came back to my room. She said she was walking out through the ER and thought about me and how she didn’t feel right about what was happening. She apologized and said she didn’t mean to make it seem like she was pushing me out of the hospital before I was ready. She told me to stay another day if I wanted, and have time to go over things and feel better about it all before I was discharged. I couldn’t believe it. I was so relieved. I know most people might want to hurry home, but I knew I wasn’t ready yet. I was still trying to deal with this new development both emotionally and physically. I needed more time. And so she gave it to me. I only stayed one extra night, but it was exactly what I needed.
Once again, strongly advocating for myself won! “You have no power here. Be Gone." ”Remember that line Glinda said to the Wicked Witch in The Wizard of Oz? That’s what I want to say to Cancer. But it would be a lie. Cancer does have power. And what I, and many of my Cancer friends, struggle with every day is trying to not let Cancer have power over our emotions. I may not be able to control the physical effects of what Cancer decides to do to my body, but somehow, somewhere deep inside me, I need to find the way to strip some power from Cancer so that I can still live a life of purpose, a life filled with happy moments and treasured memories. I’m gearing up for a Be Gone Battle with Cancer. I will have to draw on all the strength I have and can borrow from my tribe of helpers. One day, maybe when I say “You have no power here. BE GONE'” it will come true. It’s a good goal to have. Until next time, Suz (and Peach and Ruby)
March 12, 2018
Let’s cut to the chase- I started my new chemo, Navelbine, and so far not so good. I am supposed to have treatment once a week, three weeks in a row, and then one week off. I was told it is a fairly “easy” chemo and is well tolerated by most people. Hmmm...for those of you who have followed my story you will doubtless remember that I seem to always fall in the “hardly ever happens” or “rare” category. I've often called my Cancer "Blue Moon Cancer", because I always seem to get something that only happens "once in a blue moon". As luck would have it, I once again fell into that category.
There was great hope at the start however. My friend Lisa took me for my first treatment because you never know if your body will have some weird reaction and you won’t be able to drive yourself home. I’ve had several friends that have had immediate horrible reactions, from a general type allergic reaction all the way to passing out and having a heart attack. There is no way to know ahead of time how your body will react. When you stop to really think about it, they are putting poison in your body. And anything can happen. It usually doesn’t, but it can. So I always have someone take me to the first treatment.
This time I was lucky. I had no immediate reaction and the next few days passed by with little to report. I had some tiredness, and then some mouth and throat sores, and finally some tumor site pain. That is exactly like it sounds, you get pain at all the sites where you have had tumors. The medicine is drawn to it. I felt that side effect was a bit of a double edge sword. The fact that I was having pain at my tumor sites meant the medicine was working. However, what explains the pain in sites where I didn’t think I had tumors? Does that mean there are other tumors that have not yet been discovered? Who knows. Part of me wants to know, but another part of me fears the answer.
The next Thursday I had my second treatment. On chemo day the first thing they do is take a blood test to see if you are able to receive the treatment. If my white blood count is to low, or other numbers are to low, than I can’t have the chemo. This time my WBC was borderline, so my doctor decided to lower the dose and go ahead with the treatment. Three hours later I was happily on my way home, without a care in the world. Cue ominous music. Just when you think you can get comfortable, something happens.
In my case, I began having stomach pains. The next few days the pain continued and progressed. What began as mild cramps turned into severe pain by Tuesday. My oncologist said stomach pain was not a side effect of Navelbine and sent me to the ER. It was there that they quickly diagnosed me as “severely neutropenic”. My WBC was dangerously low and they decided to admit me right away. Since they gave me a dose of an amazing painkiller, I did not object. I knew I would not be able to control my pain at home, so the hospital was the best place for me to be. I had never stayed at Palos Hospital, but I loved it. Everyone was so warm and caring, the way you picture a nurse to be.
Because my oncologist does not work out of Palos, they assigned me one of their oncologists, and he kept in touch with my doctor. He was a bit..odd. He paced back and forth the entire time he talked to me and I felt like he was always giving me a Cancer pop quiz. He would phrase things in a question form, “What do you think it means that the pain started on the same day as your chemo?” Me: “That the pain is a side effect”. He would nod and say affirmative things like yes, yes or right, right. But other than that quirkiness he was fine. He prescribed medicine that worked and that’s what I needed. Three days later I was able to come home. They determined that I had a “very rare” reaction to the chemo drug and gave me medication for abdominal spasms, pain, and another drug to boost my WBC.
And now before me stands the big question; do I continue on this chemo drug? Do I give it another try? Or do I say Hell no I’m not going through that again? It’s not as easy to answer as it may first appear. If I quit this drug than it’s on to the next one, and there are only so many drugs out there. It’s not as if there is an endless supply. At some point in time I will have tried all the drugs that might work for my Cancer and I will start looking at clinical trials. I have had a lot of experience with pain in the last four years with Cancer. I don’t run to the doctor for every little pain. I actually waited much longer than I should have with this stomach pain. By the time my friend Dee picked me up to take me to the ER I couldn’t even stand up straight, I was doubled over in pain. I rated it a 9 out of 10. I just kept thinking I needed to suck it up and it would go away. I think a lot of Cancer people do that. The thought of having to go sit in a germ filled ER for hours makes me want to stick it out at home. If this does happen to me again, I know now I won’t wait so long. The nurse at Palos took me to a private room as soon as I told her I had Stage 4 Cancer. They were all great and made me feel...safe.
I’ve decided that if my oncologist wants me to try the Navelbine for one more time I will agree to it, but only if she agrees to send me home with a drug that is strong enough for the pain I may get. I already have a prescription for the abdominal spasms, so hopefully if I take that before chemo I might not even get the pains. Stranger things have happened.
Until my blood counts have stabilized I am not suppose to leave my house or have any visitors that might be the least bit sick. What is a cold to you may turn into pneumonia for me. I have to be super cautious. I wish they had a home test kit for your WBC, that way I would know when I could safely leave the house. In the meantime, I’ll be doing a lot of binge watching and book reading, and waiting for warm, sunny weather so I can sit on my porch and sip lemonade. Thank you for all your words of encouragement. Cross your fingers and pray that the chemo will work it’s magic but not make me sick! Until next time, Sue
January 28, 2018
Great news! Radiation is all done. As the pain has been increasing over the past two months, my oncologist has been adjusting my pain meds. I’ve gone from taking two 7.5 Vicodin to one 5mg Oxycodone, to one 10 mg Oxycodone, and now one 15mg Oxycodone every four hours, with one Vicodin for any breakthrough pain. My oncology nurse said they didn’t want to increase my pain meds anymore because I should soon be feeling the healing effects of the radiation. Meanwhile, my radiation nurse explained, when I complained of pain, that it’s not unusual for the pain to increase during radiation, especially in my case because the radiation is going through muscle, and that’s painful. Maybe the two of them should compare notes. Not only are they not on the same page, they aren’t even in the same book. And who suffers because of it? Me, of course. The pain was so bad that I had to call my friend Dee to drive me at the last minute. Luckily she was able to take me. For the rest of that week I asked other friends to take me too. I just couldn’t do it alone.
It’s been difficult learning to ask for help. People are always telling me to “call if you need anything”, but that is easier said than done. When I look back over the past four years since this Cancer chaos has been in my life (with a brief respite in the middle somewhere when I was supposedly “cured”), I see how much my relationships have changed. Family, friends, co-workers and people who use to be just acquaintances but are now friends, they have all changed. Most in a good way, some not. This horrible disease doesn’t just change the person who has it, it changes everyone around that person too.
I’ve noticed the different ways people in my life have handled it. Take my close friend Dee for example. Dee has always responded to any crisis, big or small, with humor. The day I found the mass on my arm I went to Dee’s house and asked her to feel my arm to see if I was just overreacting. Unfortunately, she felt the lump too. When the doctor sent me immediately to the urgent care center to rule out a blood clot, my mind jumped right to the possibility of Cancer instead. I told Dee and she laughed and said “Who gets arm cancer? That’s not a thing.”
After the ultrasound results verified that it was a mass, I told Dee. I was upset and crying a bit. Of course she laughed at the result and said “It’s probably an aneurysm in your arm. They probably just have to drain it.” For the next few days, while different tests were being done, Dee kept up her running aneurysm joke. And every time she told another joke about it she made me laugh. We started having conversations about how we thought they would drain it. We decided the best course of action would be for the surgeon to just make an incision in the mass and use some type of vacuum tool to suck out the Cancer. If only it were that easy! Humor is how Dee copes best, and she makes me laugh, even at Cancer. And any day that I can laugh instead of cry is a good day. So thank you for making me laugh Dee.
I can’t speak for every Cancer patient, we are all different, of course. But for me, it helps to have people by my side, offering help, prayers and encouragement. Or cookies and candy- that works too! I’ve said it before and I will say it again, Cancer is hard to do alone. So just show up. That’s all you have to do. Show up by calling, stopping over, sending a card or a text. Just show up, and the rest will just fall into place. Don't overthink it- some people worry that they will have to talk about the Cancer with me for hours on end and they will leave depressed. Trust me, I don't want to talk about it at length anymore then you want to hear it. Just be the same friend you have always been, and I will try my best to be the same person I've always been. True, Cancer has changed some things about me, but mostly I am the same person you have always known. Cancer doesn't define me. It's not who I am. It's just one small part of me. Currently that "small part" is a golf ball, four grapes, and three marbles to be exact. Oh! I almost forgot- and one zombie tumor the size of a peach.
My birthday is coming up soon- February 6th. A few years ago, when I mistakenly thought I had beat Cancer, I threw myself a party and called it 53 and Cancer Free! I don’t know what I would call this one. Last year was 55 and still Alive! But this year? This year sucks the most and I just can’t find a happy rhyme. So how about this? I love getting cards in the mail. I know, it’s corny. But, for whatever outdated reason, I love getting them. It reminds me that there are many people that care about me. People that I don’t see every day, or ones from my online support groups that I have never met in person. When someone takes the time to buy a card and send it along, it makes me happy. So, here is my address, and if you want to send me a card, please do. Sue Fleharty 10617 S LeClaire Oak Lawn, IL 60453
My surgery to get my port back in is scheduled for February 14th- I know, Happy Valentine’s Day. Then I will start chemo on February 22. I will be sure to fill you all in on what happens next. Let me leave you with this one thought. When someone you know, whether a little or a lot, is hurting, reach out. Help them. Care for them. Be compassionate. Just show up. Someday you may be the one who needs that kind word or gentle hug. I am so thankful to have my kids (and Baby Jack!) and close friends who are helping me get through this nightmare- one day at a time. I am not alone. I may have days that I feel like I am, but than someone calls or sends a card and it reminds me again that there are a lot of people helping me. This is a team effort, and I am so blessed to have a team. Until next time, Suz
Great news! Radiation is all done. As the pain has been increasing over the past two months, my oncologist has been adjusting my pain meds. I’ve gone from taking two 7.5 Vicodin to one 5mg Oxycodone, to one 10 mg Oxycodone, and now one 15mg Oxycodone every four hours, with one Vicodin for any breakthrough pain. My oncology nurse said they didn’t want to increase my pain meds anymore because I should soon be feeling the healing effects of the radiation. Meanwhile, my radiation nurse explained, when I complained of pain, that it’s not unusual for the pain to increase during radiation, especially in my case because the radiation is going through muscle, and that’s painful. Maybe the two of them should compare notes. Not only are they not on the same page, they aren’t even in the same book. And who suffers because of it? Me, of course. The pain was so bad that I had to call my friend Dee to drive me at the last minute. Luckily she was able to take me. For the rest of that week I asked other friends to take me too. I just couldn’t do it alone.
It’s been difficult learning to ask for help. People are always telling me to “call if you need anything”, but that is easier said than done. When I look back over the past four years since this Cancer chaos has been in my life (with a brief respite in the middle somewhere when I was supposedly “cured”), I see how much my relationships have changed. Family, friends, co-workers and people who use to be just acquaintances but are now friends, they have all changed. Most in a good way, some not. This horrible disease doesn’t just change the person who has it, it changes everyone around that person too.
I’ve noticed the different ways people in my life have handled it. Take my close friend Dee for example. Dee has always responded to any crisis, big or small, with humor. The day I found the mass on my arm I went to Dee’s house and asked her to feel my arm to see if I was just overreacting. Unfortunately, she felt the lump too. When the doctor sent me immediately to the urgent care center to rule out a blood clot, my mind jumped right to the possibility of Cancer instead. I told Dee and she laughed and said “Who gets arm cancer? That’s not a thing.”
After the ultrasound results verified that it was a mass, I told Dee. I was upset and crying a bit. Of course she laughed at the result and said “It’s probably an aneurysm in your arm. They probably just have to drain it.” For the next few days, while different tests were being done, Dee kept up her running aneurysm joke. And every time she told another joke about it she made me laugh. We started having conversations about how we thought they would drain it. We decided the best course of action would be for the surgeon to just make an incision in the mass and use some type of vacuum tool to suck out the Cancer. If only it were that easy! Humor is how Dee copes best, and she makes me laugh, even at Cancer. And any day that I can laugh instead of cry is a good day. So thank you for making me laugh Dee.
I can’t speak for every Cancer patient, we are all different, of course. But for me, it helps to have people by my side, offering help, prayers and encouragement. Or cookies and candy- that works too! I’ve said it before and I will say it again, Cancer is hard to do alone. So just show up. That’s all you have to do. Show up by calling, stopping over, sending a card or a text. Just show up, and the rest will just fall into place. Don't overthink it- some people worry that they will have to talk about the Cancer with me for hours on end and they will leave depressed. Trust me, I don't want to talk about it at length anymore then you want to hear it. Just be the same friend you have always been, and I will try my best to be the same person I've always been. True, Cancer has changed some things about me, but mostly I am the same person you have always known. Cancer doesn't define me. It's not who I am. It's just one small part of me. Currently that "small part" is a golf ball, four grapes, and three marbles to be exact. Oh! I almost forgot- and one zombie tumor the size of a peach.
My birthday is coming up soon- February 6th. A few years ago, when I mistakenly thought I had beat Cancer, I threw myself a party and called it 53 and Cancer Free! I don’t know what I would call this one. Last year was 55 and still Alive! But this year? This year sucks the most and I just can’t find a happy rhyme. So how about this? I love getting cards in the mail. I know, it’s corny. But, for whatever outdated reason, I love getting them. It reminds me that there are many people that care about me. People that I don’t see every day, or ones from my online support groups that I have never met in person. When someone takes the time to buy a card and send it along, it makes me happy. So, here is my address, and if you want to send me a card, please do. Sue Fleharty 10617 S LeClaire Oak Lawn, IL 60453
My surgery to get my port back in is scheduled for February 14th- I know, Happy Valentine’s Day. Then I will start chemo on February 22. I will be sure to fill you all in on what happens next. Let me leave you with this one thought. When someone you know, whether a little or a lot, is hurting, reach out. Help them. Care for them. Be compassionate. Just show up. Someday you may be the one who needs that kind word or gentle hug. I am so thankful to have my kids (and Baby Jack!) and close friends who are helping me get through this nightmare- one day at a time. I am not alone. I may have days that I feel like I am, but than someone calls or sends a card and it reminds me again that there are a lot of people helping me. This is a team effort, and I am so blessed to have a team. Until next time, Suz
January 11, 2018
Sorry for the long, unexplained absence. I really wanted to soak up every happy minute of the holidays that I could. I didn’t want to think about the Cancer and what the next steps are. I wanted to just spend time with my family for the holidays.
My holiday season was absolutely perfect this year. We all ignored the Cancer and spent a lot of time together. My grandson Jack was my biggest holiday wish, and I am so blessed to have him this Christmas. When my mom passed away in 2013 my extended family kind of took off in different directions. There was no argument or hurt feelings, we just all went our own way. With my mom gone there was no one to organize the holidays. Everyone always went to Mimi’s house and we spent many years going there every Sunday and of course every holiday. This year I decided to step up and be the designated matriarch of the family. It was wonderful to all be together on Christmas Eve. Everyone sharing memories and telling funny stories of the crazy things we had all done over the years. Family should always come first, and since I took charge, it all happened this year. What a blessing.
And now the news you’ve all been waiting for- the pet scan result. I think by now everyone has just assumed it is bad news, otherwise I would have posted right away. The mass in my upper left arm is Cancer. It’s about the size of a golf ball. Around my left shoulder are numerous smaller Cancer spots. My Radiation Oncologist thinks the intense pain is from the smaller spots because they are located in several joints. But that’s not all. There are also 3 new spots in my right lung. One is where the previous tumor was, and the other two are located at the top and bottom of that lung. The ones in and around my lung are very small.
Decision time- do I treat the arm and shoulder with radiation first in hopes of alleviating the pain? Or do I start chemo right away on the lung area because that is the more “important” spot. After talking with both my oncologist and my radiation oncologist we all agreed that treating the arm and shoulder should be first. This time the radiation will only be ten treatments, so it doesn’t push the chemo that far behind. The pain is worse than any I have ever had. It is especially difficult at night when I am trying to find a comfortable way to sleep. Also, once I start chemo, there is no end date. I will be on chemo until it is no longer working. I will do three months of chemo followed by a scan to determine if it’s working. If it is, then I just keep on going with that chemo. If it isn’t working, we switch to a different chemo. The new chemo is called Navelbine and it is IV chemo three weeks on and two weeks off. Dr. Gaynor said the most troubling side effect is a large drop in my white blood count. She said that most patients can’t tolerate three weeks in a row, and if that is the case for me we will do two weeks on and one week off.
As if going back on chemo isn’t enough bad news, there is this. I have to get my port put back in. When I had chemo back in 2014 it was administered through a port that was surgically placed in my chest. Once I got the all clear last time I decided to get the port taken out. I hated the port for both physical and psychological reasons. The port is placed just under your skin, so you see the bump. It serves as a constant reminder of your Cancer. That is why I removed it. Now, it’s time to get it back in. For me, the surgery was very painful. Cutting through your chest wall hurts a lot! But once again, I have no choice. The chemo I will be on will damage my veins and cause burning in my arm. So, no choice really.
Amidst all this bad news, there has been one amazing thing that happened. The Radiation Oncologist that I saw last summer at Little Company of Mary Hospital is wonderful. He is one of the most kind and caring people I have met during my Cancer ordeal. He always takes the time to talk to me and explain everything. He likes to show me my scans so that I can better understand what’s happening. I was very disappointed when I called his office to set up my new radiation and found out his physician group no longer accepts my insurance. I was already weepy when making the call, and when his nurse (who I also love) told me I would not be able to see him this time I started to cry. It was not a pretty phone call for either of us. She said she would call the billing department, but said it didn’t look good. And then- the miracle happened. Ten minutes after I hung up with the nurse the phone rang. I saw it was the doctor’s office and thought, Wow, that was quick. But it wasn’t her voice, it was the doctor’s voice! He asked how I was doing and what happened and wanted me to fill him in on how it came back and all the details. And then, wait for it, he said he would be willing to waive his professional fee so that he would be able to treat me! Since the hospital accepted my insurance there was no problem on their end. And that friends, is generosity on a whole new level. I was shocked and stunned and momentarily speechless. Then I started to cry, just a little, and thanked him.
Walking into the Radiology Department felt like coming home. All three techs that treated me were still there. Each of them approached me when I got there and gave me a hug. They said they were not happy to see me, given the situation, but felt they would get rid of the Cancer again! My Cancer team was back together. It felt so good to be around people who truly care about you. I trust them, and that’s important when your life's on the line.
I don’t know what to expect this time around with the chemo. So far, every chemo I have had has given me horrible side effects, and didn’t work. I wouldn’t mind throwing up every day if it was keeping me alive. The problem is, I have to endure every chemo I try for three months before we find out if it is working. I wish there was an easier way to do this. Now, more than ever before, I have so many reasons to keep fighting. Of course my grandson Jack. I get easily depressed when I think of how long I need to be alive before I can make a memory that Jack will remember me by. How old were you in the first memory you have? I think I was 6, so I have a long way to go before I will be more than just a photo Kaitlin will show Jack and say “You don’t remember her, but this was your Grandma.” And I want to see Ryan and Kara each get married and start a family. Mostly, I want to spend as much time as I can making more memories with my family. Lots of memories. I am hoping this chemo won’t be so bad and I will be able to live my life going places and doing fun things with my kids. Thank you for your support during yet another setback. I appreciate the kind thoughts and treats. Until next time, Suz
Sorry for the long, unexplained absence. I really wanted to soak up every happy minute of the holidays that I could. I didn’t want to think about the Cancer and what the next steps are. I wanted to just spend time with my family for the holidays.
My holiday season was absolutely perfect this year. We all ignored the Cancer and spent a lot of time together. My grandson Jack was my biggest holiday wish, and I am so blessed to have him this Christmas. When my mom passed away in 2013 my extended family kind of took off in different directions. There was no argument or hurt feelings, we just all went our own way. With my mom gone there was no one to organize the holidays. Everyone always went to Mimi’s house and we spent many years going there every Sunday and of course every holiday. This year I decided to step up and be the designated matriarch of the family. It was wonderful to all be together on Christmas Eve. Everyone sharing memories and telling funny stories of the crazy things we had all done over the years. Family should always come first, and since I took charge, it all happened this year. What a blessing.
And now the news you’ve all been waiting for- the pet scan result. I think by now everyone has just assumed it is bad news, otherwise I would have posted right away. The mass in my upper left arm is Cancer. It’s about the size of a golf ball. Around my left shoulder are numerous smaller Cancer spots. My Radiation Oncologist thinks the intense pain is from the smaller spots because they are located in several joints. But that’s not all. There are also 3 new spots in my right lung. One is where the previous tumor was, and the other two are located at the top and bottom of that lung. The ones in and around my lung are very small.
Decision time- do I treat the arm and shoulder with radiation first in hopes of alleviating the pain? Or do I start chemo right away on the lung area because that is the more “important” spot. After talking with both my oncologist and my radiation oncologist we all agreed that treating the arm and shoulder should be first. This time the radiation will only be ten treatments, so it doesn’t push the chemo that far behind. The pain is worse than any I have ever had. It is especially difficult at night when I am trying to find a comfortable way to sleep. Also, once I start chemo, there is no end date. I will be on chemo until it is no longer working. I will do three months of chemo followed by a scan to determine if it’s working. If it is, then I just keep on going with that chemo. If it isn’t working, we switch to a different chemo. The new chemo is called Navelbine and it is IV chemo three weeks on and two weeks off. Dr. Gaynor said the most troubling side effect is a large drop in my white blood count. She said that most patients can’t tolerate three weeks in a row, and if that is the case for me we will do two weeks on and one week off.
As if going back on chemo isn’t enough bad news, there is this. I have to get my port put back in. When I had chemo back in 2014 it was administered through a port that was surgically placed in my chest. Once I got the all clear last time I decided to get the port taken out. I hated the port for both physical and psychological reasons. The port is placed just under your skin, so you see the bump. It serves as a constant reminder of your Cancer. That is why I removed it. Now, it’s time to get it back in. For me, the surgery was very painful. Cutting through your chest wall hurts a lot! But once again, I have no choice. The chemo I will be on will damage my veins and cause burning in my arm. So, no choice really.
Amidst all this bad news, there has been one amazing thing that happened. The Radiation Oncologist that I saw last summer at Little Company of Mary Hospital is wonderful. He is one of the most kind and caring people I have met during my Cancer ordeal. He always takes the time to talk to me and explain everything. He likes to show me my scans so that I can better understand what’s happening. I was very disappointed when I called his office to set up my new radiation and found out his physician group no longer accepts my insurance. I was already weepy when making the call, and when his nurse (who I also love) told me I would not be able to see him this time I started to cry. It was not a pretty phone call for either of us. She said she would call the billing department, but said it didn’t look good. And then- the miracle happened. Ten minutes after I hung up with the nurse the phone rang. I saw it was the doctor’s office and thought, Wow, that was quick. But it wasn’t her voice, it was the doctor’s voice! He asked how I was doing and what happened and wanted me to fill him in on how it came back and all the details. And then, wait for it, he said he would be willing to waive his professional fee so that he would be able to treat me! Since the hospital accepted my insurance there was no problem on their end. And that friends, is generosity on a whole new level. I was shocked and stunned and momentarily speechless. Then I started to cry, just a little, and thanked him.
Walking into the Radiology Department felt like coming home. All three techs that treated me were still there. Each of them approached me when I got there and gave me a hug. They said they were not happy to see me, given the situation, but felt they would get rid of the Cancer again! My Cancer team was back together. It felt so good to be around people who truly care about you. I trust them, and that’s important when your life's on the line.
I don’t know what to expect this time around with the chemo. So far, every chemo I have had has given me horrible side effects, and didn’t work. I wouldn’t mind throwing up every day if it was keeping me alive. The problem is, I have to endure every chemo I try for three months before we find out if it is working. I wish there was an easier way to do this. Now, more than ever before, I have so many reasons to keep fighting. Of course my grandson Jack. I get easily depressed when I think of how long I need to be alive before I can make a memory that Jack will remember me by. How old were you in the first memory you have? I think I was 6, so I have a long way to go before I will be more than just a photo Kaitlin will show Jack and say “You don’t remember her, but this was your Grandma.” And I want to see Ryan and Kara each get married and start a family. Mostly, I want to spend as much time as I can making more memories with my family. Lots of memories. I am hoping this chemo won’t be so bad and I will be able to live my life going places and doing fun things with my kids. Thank you for your support during yet another setback. I appreciate the kind thoughts and treats. Until next time, Suz
December 12, 2017
The night I went out drinking with my oncologist and other fantasies of a Cancer girl.
After my recent visit to my oncologist, I decided that one of my Christmas wishes would be to get drunk, or at least a little tipsy, with my doctor. A strange request? Maybe, but here’s my reasoning. If she were to get a little tipsy than she would answer the ever nagging question of “How much longer do you really think I have?”. It is impossible to read the mind, or even pick up unspoken cues, from any oncologist. I understand that even though medicine is a science, it’s not exact, and there are so many variables. Therefore, it’s a question best not answered, and I know that in my head. But in my heart, there is always a part of me that thinks I want to know a timeline, just a rough one even. After my last visit I thought to myself “I wonder what my doctor tells her friends when they go out for drinks.” Does she say Oh, I saw this one woman today and boy are things not looking good and she is so clueless! Or does she say, I saw this woman today who is so worried, but she’s doing great actually and I wish I could convince her to not worry so much. So, which one is it?
However, there is the be careful what you wish for warning. What if she did tell me things are bleak? How would I actually feel about that? Ugh! This is so confusing and depressing and all consuming. Like many of my Cancer friends, I have not been able to get through one entire day without thinking about my Cancer. I don’t usually think about it all day, but it’s always there. It’s pretty stressful.
And now it’s time for an update of sorts. I am currently waiting for my next Pet scan which has been moved up to this Thursday. Why, you ask? Here goes!
Our story begins with our heroine (that's me) having shoulder pain for about the past six months. I blew it off because I thought it was probably my Fibromyalgia flaring up. But then it got worse, and very painful. I went to my primary doctor, because by the way not everything is cancer, right? Well let’s see how this plays out. The primary sent me for an x-ray of my shoulder and referred me to an orthopedic doctor. The x-ray showed calcification in the shoulder and..wait for it...the humerus was suspicious (a favorite word of all radiologists) for metastatic disease. Off to the ortho guy I went. He walked in and our visit began:
Ortho Doc: Ummm...I see here in your file you are a patient of Dr.Gaynor’s?
Me: Yes.
Ortho Doc: Ok, well can you tell me a bit about why you see her?
Me: Well, I have Metastatic Breast Cancer.
Ortho Doc: Sighs heavily. Whew, oh good. Well that’s good then..I mean, well, I wanted to make sure you already knew you have Cancer.
Me: What on my shoulder x-ray shows Cancer?
Ortho Doc: Well the humerus is suspicious for metastatic disease.
Gee, thanks genius, I read the report too. Ok, that part I didn’t say out loud, but I thought it. Anyway, he gave me a cortisone shot and promised the pain would subside in 72 hours. Liar, liar pants on fire. Didn’t happen. Not his fault though. Just the Zombie Cancer again I guess. I waited almost two weeks after the shot hoping it would get better. But it didn’t. It got worse. I was now taking Vicodin, Advil, Morphine, and using my special marijuana muscle freeze cream and still had pain. Than one day I woke up and noticed my upper arm had a strange swelling. What the heck?
I called my primary to make an appointment, because again, I kept thinking maybe this was not cancer related. The nurse called me back and said the doctor wanted me to go immediately to an urgent care center and get an ultrasound to rule out a blood clot. This was on a Thursday night at 6:00, and I was told this could not wait until my appointment on Monday. It could be serious. After dealing with all this cancer crap for 3 years now I made the best decision possible at the time, I decided to go to the urgent care in the morning. Haha. My daughter directs a children’s theater, and it was opening night, and I wasn’t about to let Cancer win this one. I was going to opening night. I founded the theater group 17 years ago, and when I was first diagnosed in 2014 my daughter Kara took over and now runs it with the energy of a 25 year old. But I go to the rehearsals and make costumes and get to know all the kids, so I didn’t want to miss opening night. Sometimes, Cancer just has to wait.
Early Friday morning I went to the urgent care center and had a great doctor. She ordered the ultrasound of the arm STAT. I had to drive to the outpatient center down the road to get the ultrasound. The doctor called ahead and they were waiting for me. It all happened very quickly. After the ultrasound the tech told me to wait in the room while the radiologist read the scan. Within ten minutes the tech came back and handed me the phone and said the doctor wanted to talk to me. Cue ominous music please. I mean, you know what’s next, right?
The doctor told me it wasn’t a blood clot. Unfortunately, it is a mass. A lobulated mass suspicious for metastatic cancer. Really??? I asked if it could possibly be anything besides Cancer. She said she spoke to the radiologist and the mass was not a cyst or filled with fluid; it was strongly suspicious for a Cancer. She was sorry. She said the radiologist could get me in on Monday for an ultrasound guided biopsy. I said I needed to talk to my oncologist first. Well, this sucks. I hung up the phone and sat alone in the room for a few minutes and cried. I don’t usually cry about these things, but it just hit me hard. The tech came back in and said she was sorry and was there someone she could call for me? I felt numb. I pulled myself together and drove home.
I tried my best to forget all about it during the weekend of the show. Then on Monday I went and saw my oncologist, which brings me to where I am now, waiting for the Pet scan. I am trying hard to believe the mass could be something else, but it’s hard. I am having so much pain and it’s so hard to sleep. Last night I didn’t fall asleep until after 4. Between the pain and the fear of the unknown I am having a tough time. While the oncologist said it’s “not normal” for the Cancer to spread to the soft tissue in my arm, it is possible. She made the vague comment of “We have had the talk about how the Cancer is never really gone, haven’t we?” Yes, yes, I know it will always be there just waiting to grow again. I just want more time.
And so friends, that’s where I am at right now. Let the Scanxiety begin. I’m going to try my best to have a great Christmas with my kids and grandson Jack. When you’re asking for special Christmas wishes, I would love it if you would put in a good word for me and a Christmas miracle. Until next time, Suz
The night I went out drinking with my oncologist and other fantasies of a Cancer girl.
After my recent visit to my oncologist, I decided that one of my Christmas wishes would be to get drunk, or at least a little tipsy, with my doctor. A strange request? Maybe, but here’s my reasoning. If she were to get a little tipsy than she would answer the ever nagging question of “How much longer do you really think I have?”. It is impossible to read the mind, or even pick up unspoken cues, from any oncologist. I understand that even though medicine is a science, it’s not exact, and there are so many variables. Therefore, it’s a question best not answered, and I know that in my head. But in my heart, there is always a part of me that thinks I want to know a timeline, just a rough one even. After my last visit I thought to myself “I wonder what my doctor tells her friends when they go out for drinks.” Does she say Oh, I saw this one woman today and boy are things not looking good and she is so clueless! Or does she say, I saw this woman today who is so worried, but she’s doing great actually and I wish I could convince her to not worry so much. So, which one is it?
However, there is the be careful what you wish for warning. What if she did tell me things are bleak? How would I actually feel about that? Ugh! This is so confusing and depressing and all consuming. Like many of my Cancer friends, I have not been able to get through one entire day without thinking about my Cancer. I don’t usually think about it all day, but it’s always there. It’s pretty stressful.
And now it’s time for an update of sorts. I am currently waiting for my next Pet scan which has been moved up to this Thursday. Why, you ask? Here goes!
Our story begins with our heroine (that's me) having shoulder pain for about the past six months. I blew it off because I thought it was probably my Fibromyalgia flaring up. But then it got worse, and very painful. I went to my primary doctor, because by the way not everything is cancer, right? Well let’s see how this plays out. The primary sent me for an x-ray of my shoulder and referred me to an orthopedic doctor. The x-ray showed calcification in the shoulder and..wait for it...the humerus was suspicious (a favorite word of all radiologists) for metastatic disease. Off to the ortho guy I went. He walked in and our visit began:
Ortho Doc: Ummm...I see here in your file you are a patient of Dr.Gaynor’s?
Me: Yes.
Ortho Doc: Ok, well can you tell me a bit about why you see her?
Me: Well, I have Metastatic Breast Cancer.
Ortho Doc: Sighs heavily. Whew, oh good. Well that’s good then..I mean, well, I wanted to make sure you already knew you have Cancer.
Me: What on my shoulder x-ray shows Cancer?
Ortho Doc: Well the humerus is suspicious for metastatic disease.
Gee, thanks genius, I read the report too. Ok, that part I didn’t say out loud, but I thought it. Anyway, he gave me a cortisone shot and promised the pain would subside in 72 hours. Liar, liar pants on fire. Didn’t happen. Not his fault though. Just the Zombie Cancer again I guess. I waited almost two weeks after the shot hoping it would get better. But it didn’t. It got worse. I was now taking Vicodin, Advil, Morphine, and using my special marijuana muscle freeze cream and still had pain. Than one day I woke up and noticed my upper arm had a strange swelling. What the heck?
I called my primary to make an appointment, because again, I kept thinking maybe this was not cancer related. The nurse called me back and said the doctor wanted me to go immediately to an urgent care center and get an ultrasound to rule out a blood clot. This was on a Thursday night at 6:00, and I was told this could not wait until my appointment on Monday. It could be serious. After dealing with all this cancer crap for 3 years now I made the best decision possible at the time, I decided to go to the urgent care in the morning. Haha. My daughter directs a children’s theater, and it was opening night, and I wasn’t about to let Cancer win this one. I was going to opening night. I founded the theater group 17 years ago, and when I was first diagnosed in 2014 my daughter Kara took over and now runs it with the energy of a 25 year old. But I go to the rehearsals and make costumes and get to know all the kids, so I didn’t want to miss opening night. Sometimes, Cancer just has to wait.
Early Friday morning I went to the urgent care center and had a great doctor. She ordered the ultrasound of the arm STAT. I had to drive to the outpatient center down the road to get the ultrasound. The doctor called ahead and they were waiting for me. It all happened very quickly. After the ultrasound the tech told me to wait in the room while the radiologist read the scan. Within ten minutes the tech came back and handed me the phone and said the doctor wanted to talk to me. Cue ominous music please. I mean, you know what’s next, right?
The doctor told me it wasn’t a blood clot. Unfortunately, it is a mass. A lobulated mass suspicious for metastatic cancer. Really??? I asked if it could possibly be anything besides Cancer. She said she spoke to the radiologist and the mass was not a cyst or filled with fluid; it was strongly suspicious for a Cancer. She was sorry. She said the radiologist could get me in on Monday for an ultrasound guided biopsy. I said I needed to talk to my oncologist first. Well, this sucks. I hung up the phone and sat alone in the room for a few minutes and cried. I don’t usually cry about these things, but it just hit me hard. The tech came back in and said she was sorry and was there someone she could call for me? I felt numb. I pulled myself together and drove home.
I tried my best to forget all about it during the weekend of the show. Then on Monday I went and saw my oncologist, which brings me to where I am now, waiting for the Pet scan. I am trying hard to believe the mass could be something else, but it’s hard. I am having so much pain and it’s so hard to sleep. Last night I didn’t fall asleep until after 4. Between the pain and the fear of the unknown I am having a tough time. While the oncologist said it’s “not normal” for the Cancer to spread to the soft tissue in my arm, it is possible. She made the vague comment of “We have had the talk about how the Cancer is never really gone, haven’t we?” Yes, yes, I know it will always be there just waiting to grow again. I just want more time.
And so friends, that’s where I am at right now. Let the Scanxiety begin. I’m going to try my best to have a great Christmas with my kids and grandson Jack. When you’re asking for special Christmas wishes, I would love it if you would put in a good word for me and a Christmas miracle. Until next time, Suz
November 5, 2017
Finally, it’s November. October was a rough month for a variety of reasons. First, let me get the whole Pinktober thing out of the way. I could write a book on all the things the MBC community, including me, hates about the Pinkwashing that happens in October. So many pretty pink things that people buy thinking they are helping people with breast cancer. From bananas to bullets (no lie, a friend in Tennessee sent me a photo of pink boxes of bullets. Still not sure how this helps me as a breast cancer patient...) So many times what you buy is not really helping at all. This year I was so bothered by it that I joined a Facebook group whose mission was to find out which companies are actually giving the money they get from selling the pink products to cancer research. When we would discover a company that wasn't actually giving any money to cancer research we would all write or post or tweet until we got a response. Many of the companies that we caught not actually helping deleted our comments and even blocked us. So frustrating.
Companies are making money off of my illness. They sexualize breast cancer with slogans like Save the Tatas. How come we never see t-shirts saying Save the Weiner for prostate cancer? I think I’ve made my point. I think we can all agree that everyone is aware of breast cancer. What we need now is research, not pink boas. We need a cure. I need a cure. My children need me to have a cure. To many of us are dying from this disease, 113 every day. This week I lost two friends. And I have two more that are in hospice. All four were diagnosed in the past 4 years. It’s scary. That’s just not enough time. This is not ok.
Please, if you feel moved to help than be sure you donate to a place that gives funding to research. My choice is Metavivor. They give 100 percent of the money raised to research. There is no overhead or hot shot CEO taking a big salary. (Yes, that’s my one dig aimed at Susan G. Komen- their CEO has a salary of $479,000, and the founder has a salary of $397,000 and is listed as a “top volunteer”. I want a volunteer job like that!) I think I’ve made my point and will move on.
I was waiting for all my test results to come in before I blogged so that I can fill everyone in on what is currently going on. I recently had a Ct scan and it showed that the cancer has spread to my spine. Kind of. Maybe. In the usual way the reports are written, it actually says “Sclerosis in upper thoracic vertebral body suspicious for metastatic disease, correlating with abnormal uptake on recent PET/CT” Oh ok, I get it now. It’s probably cancer, but we are not 100% sure, but it looks like cancer. So my doctor and I discussed how to proceed in treating the cancer in the spine. Visions of painful surgery putting rods in my back or me stuck in a wheelchair kept me up at night. This was not good news. But before we made any treatment decisions she ordered an MRI to get a better look at the extent of the cancer. And what did the MRI reveal, you ask? It revealed no cancer in the spine. The radiologist who read the MRI feels there is no cancer in the spine.
When the doctor called me, just a few hours after the MRI, I was at first nervous to pick up the phone. My experience thus far has always been that if the news is bad they call right away. Good news always waits a few days. So the call that comes a few hours after the test is usually not good news. But than this happened! The doctor called and said no cancer in the spine. Time to celebrate, you say? Well I have also learned that there’s always one more thing. It’s never just good news and good bye.
This time the one more thing was the very strange finding that the DEAD PEACH in my lung has increased in size. WHAT???? How is that possible? That tumor is dead. It is necrotic tissue. You told me it would stay dead and would not come back to life. That’s what you said. So how is it growing if it’s dead tissue?? Do I have Zombie Cancer??? This made no sense to me and I was feeling bewildered while the doctor rambled on. I stopped her and told her that I thought it could not grow, that it was dead tissue. Do you remember telling me that?? And she replied with “Well even though that tumor has been treated until the cows come home that doesn’t mean there weren’t some small cancer cells left behind.”
Let me get this straight- the good news is the MRI radiologist doesn’t agree with the Ct radiologist and says there is no cancer in my spine. So I can celebrate that? Yes, says the doctor. But now you’re telling me that even though multiple doctors said the tumor in my lung was dead, there were actually some cancer cells left behind and now they are growing?? ” Yes, that’s what appears to be happening. We can discuss this in detail at your appointment next week. I will also be ordering a chest x-ray because the MRI shows a pleural effusion, so we need to get that checked out.”
I hung up and just felt--- numb. Dumbfounded. Confused. Aggravated. Annoyed. So many feelings. So many questions. This Cancer trip sure is a rollercoaster. It has not escaped my notice that I am 19 months into my diagnosis. Metastatic Breast Cancer has a median survival rate after diagnosis of 3 years. There has been no statistically significant improvement in the past twenty years. That’s scary. That’s wrong. I want that to be wrong. I mean, there is a chance I can be that outlier who lives 20 years, right? I mean someone has to be. Why not me? Current statistics say that the 5 year survival rate is 22%. Surely I can shoot for that, right? It may not quite be a Hunger Games moment of “May the odds be ever in your favor.”, but it is possible. Someone has to be the 22%. And maybe, just maybe, I can hang on long enough to benefit from whatever new drugs and treatments they are developing right now. Wait, I think I am sounding desperate. Am I? I think I have started to do that super stressed out ramble...
And so this is a good spot to end for today. Cancer is not without it’s "perks" though. Several of my close friends have dropped off chocolate to ease my struggle- that always helps. My cousin Edie sent not only a handmade baby blanket and sweater for Jack, but also a thoughtful gift called Jesus is Calling and I love it. I read it every day. And my friend Jen sent me an awesome care package of aromatherapy items and other goodies to ease my stress. And it helps, it really does. Aromatherapy and a few Vicodin and some Morphine and I’m good to go. Lately I've been taking a lot of pain meds to keep me going, but that’s ok. Whatever it takes. You know what else helps? Tomorrow I get to babysit Jack!
How about ending on another quote from that book Hopps gave me?
“Remember that time you were like, Oh no! What am I gonna do?”
But Jesus was like, “Don’t worry- I got this” ...and then everything turned out all right?
“Don’t Worry- I Got This” is pretty much the essence of the whole gospel.”
Can I get an Amen??? Until next time, Suz
Finally, it’s November. October was a rough month for a variety of reasons. First, let me get the whole Pinktober thing out of the way. I could write a book on all the things the MBC community, including me, hates about the Pinkwashing that happens in October. So many pretty pink things that people buy thinking they are helping people with breast cancer. From bananas to bullets (no lie, a friend in Tennessee sent me a photo of pink boxes of bullets. Still not sure how this helps me as a breast cancer patient...) So many times what you buy is not really helping at all. This year I was so bothered by it that I joined a Facebook group whose mission was to find out which companies are actually giving the money they get from selling the pink products to cancer research. When we would discover a company that wasn't actually giving any money to cancer research we would all write or post or tweet until we got a response. Many of the companies that we caught not actually helping deleted our comments and even blocked us. So frustrating.
Companies are making money off of my illness. They sexualize breast cancer with slogans like Save the Tatas. How come we never see t-shirts saying Save the Weiner for prostate cancer? I think I’ve made my point. I think we can all agree that everyone is aware of breast cancer. What we need now is research, not pink boas. We need a cure. I need a cure. My children need me to have a cure. To many of us are dying from this disease, 113 every day. This week I lost two friends. And I have two more that are in hospice. All four were diagnosed in the past 4 years. It’s scary. That’s just not enough time. This is not ok.
Please, if you feel moved to help than be sure you donate to a place that gives funding to research. My choice is Metavivor. They give 100 percent of the money raised to research. There is no overhead or hot shot CEO taking a big salary. (Yes, that’s my one dig aimed at Susan G. Komen- their CEO has a salary of $479,000, and the founder has a salary of $397,000 and is listed as a “top volunteer”. I want a volunteer job like that!) I think I’ve made my point and will move on.
I was waiting for all my test results to come in before I blogged so that I can fill everyone in on what is currently going on. I recently had a Ct scan and it showed that the cancer has spread to my spine. Kind of. Maybe. In the usual way the reports are written, it actually says “Sclerosis in upper thoracic vertebral body suspicious for metastatic disease, correlating with abnormal uptake on recent PET/CT” Oh ok, I get it now. It’s probably cancer, but we are not 100% sure, but it looks like cancer. So my doctor and I discussed how to proceed in treating the cancer in the spine. Visions of painful surgery putting rods in my back or me stuck in a wheelchair kept me up at night. This was not good news. But before we made any treatment decisions she ordered an MRI to get a better look at the extent of the cancer. And what did the MRI reveal, you ask? It revealed no cancer in the spine. The radiologist who read the MRI feels there is no cancer in the spine.
When the doctor called me, just a few hours after the MRI, I was at first nervous to pick up the phone. My experience thus far has always been that if the news is bad they call right away. Good news always waits a few days. So the call that comes a few hours after the test is usually not good news. But than this happened! The doctor called and said no cancer in the spine. Time to celebrate, you say? Well I have also learned that there’s always one more thing. It’s never just good news and good bye.
This time the one more thing was the very strange finding that the DEAD PEACH in my lung has increased in size. WHAT???? How is that possible? That tumor is dead. It is necrotic tissue. You told me it would stay dead and would not come back to life. That’s what you said. So how is it growing if it’s dead tissue?? Do I have Zombie Cancer??? This made no sense to me and I was feeling bewildered while the doctor rambled on. I stopped her and told her that I thought it could not grow, that it was dead tissue. Do you remember telling me that?? And she replied with “Well even though that tumor has been treated until the cows come home that doesn’t mean there weren’t some small cancer cells left behind.”
Let me get this straight- the good news is the MRI radiologist doesn’t agree with the Ct radiologist and says there is no cancer in my spine. So I can celebrate that? Yes, says the doctor. But now you’re telling me that even though multiple doctors said the tumor in my lung was dead, there were actually some cancer cells left behind and now they are growing?? ” Yes, that’s what appears to be happening. We can discuss this in detail at your appointment next week. I will also be ordering a chest x-ray because the MRI shows a pleural effusion, so we need to get that checked out.”
I hung up and just felt--- numb. Dumbfounded. Confused. Aggravated. Annoyed. So many feelings. So many questions. This Cancer trip sure is a rollercoaster. It has not escaped my notice that I am 19 months into my diagnosis. Metastatic Breast Cancer has a median survival rate after diagnosis of 3 years. There has been no statistically significant improvement in the past twenty years. That’s scary. That’s wrong. I want that to be wrong. I mean, there is a chance I can be that outlier who lives 20 years, right? I mean someone has to be. Why not me? Current statistics say that the 5 year survival rate is 22%. Surely I can shoot for that, right? It may not quite be a Hunger Games moment of “May the odds be ever in your favor.”, but it is possible. Someone has to be the 22%. And maybe, just maybe, I can hang on long enough to benefit from whatever new drugs and treatments they are developing right now. Wait, I think I am sounding desperate. Am I? I think I have started to do that super stressed out ramble...
And so this is a good spot to end for today. Cancer is not without it’s "perks" though. Several of my close friends have dropped off chocolate to ease my struggle- that always helps. My cousin Edie sent not only a handmade baby blanket and sweater for Jack, but also a thoughtful gift called Jesus is Calling and I love it. I read it every day. And my friend Jen sent me an awesome care package of aromatherapy items and other goodies to ease my stress. And it helps, it really does. Aromatherapy and a few Vicodin and some Morphine and I’m good to go. Lately I've been taking a lot of pain meds to keep me going, but that’s ok. Whatever it takes. You know what else helps? Tomorrow I get to babysit Jack!
How about ending on another quote from that book Hopps gave me?
“Remember that time you were like, Oh no! What am I gonna do?”
But Jesus was like, “Don’t worry- I got this” ...and then everything turned out all right?
“Don’t Worry- I Got This” is pretty much the essence of the whole gospel.”
Can I get an Amen??? Until next time, Suz
September 27, 2017
Baby Jack has arrived! September 24th, 8:00 am, 8 lbs 1 oz. I am finally a Grandma. I knew this would be exciting, but nothing prepares you for the utter joy you feel when you hold your grandchild for the very first time. Of course I cried- tears of joy. Holding him and rocking him I couldn’t help but think how this almost didn’t happen for me. There were so many moments, days, weeks, even months, when I didn’t think I would live to see this moment. The whole Cancer experience took me down such dark and gloomy roads, roads that led to nowhere good. Roads that led away from a happy life and to a sad, lonely place. But, thanks to modern medicine, I am still here!
I truly believe that if I didn’t have the last radiation I would not be here now. At the fast rate the tumor in my lung was growing, I didn’t have much more time. I remember last December thinking I would not be here for another Christmas. I never told anyone that, but it’s how I felt. You think of all the things you won’t be here for when you have a terminal illness. Weddings. Grandchildren. Holidays. It’s so easy to slip into the despair of your situation. But then I remembered a quote that stuck in my mind from reading Anne of Green Gables. Anne asks Marilla, “Can’t you even imagine you’re in the depths of despair?” To which Marilla replies. “No I cannot. To despair is to turn your back on God.” Who am I to turn my back on God? God has never turned His back on me. I know when horrible things happen that we tend to either blame God for allowing it to happen, or blame Him for making it happen. I never felt that way. Of course I was not at all happy with the Cancer, but I never blamed God. Sometimes God doesn’t change what is happening to you because He is trying to change your heart. Maybe God wanted to change my heart. Maybe He is using me to show others the way. I like to think He is. Which is why I continue to blog. I like to think that what I share in some way is helpful to someone. And perhaps, that is God’s purpose of me having Cancer.
I’ve really been struggling with something lately, and have been praying for guidance. I am trying to find my place in the Cancer community. I never knew there was such a thing, but you learn a lot once you have to. It’s a bit like running down the pier getting ready to jump in the lake when suddenly someone comes up behind you and pushes you in. It’s suddenly sink or swim time, whether you were ready or not. When I first was diagnosed in 2014 with Stage 1, I didn’t join any support groups. I didn’t feel like I needed to. The doctors were optimistic and I felt like I was getting all the support I needed from family and friends. But that all changed when I was diagnosed in 2016 with Stage 4.
Stage 4, MBC (Metastatic Breast Cancer) is a whole new thing. It’s like comparing Little League baseball to the World Series. Or the Kindergarten Christmas program to a Broadway show. It’s just that different. And so I joined a support group that was just for MBC women. And I loved it. For awhile. It was hard to go every week and hear from women who were further along their diagnosis than I was. I still felt good back then. I had not started the rough chemo and I still believed I could “beat it”. Sitting with other MBC women in varying stages of the disease was both hard and enlightening. And then one day, I couldn’t do it. I could not bring myself to go and sit there and watch these women that I was becoming friends with get worse week after week. I was shocked by my own actions. I have always been so compassionate. And I still was. But the self-preservation gene kicked in and I stopped going. I found each week I went I came home more depressed. I knew I was not in a good place mentally to go to the meetings.
Fast forward one year. I never have gone back to the group, though I sometimes hear from a couple of them and will on occasion go to breakfast together. The women I met there are amazing Cancer Warriors, and I loved them for it. I just couldn’t do it myself. I needed to distance myself from what the end will probably look like for me. That is a hard place to sit yourself, looking at your end. If I looked close enough, what I did see in the women was strength and even peace with their destiny. I just wasn’t ready to be there. I’m still not. And I’m trying to be ok with that.
What I did do was join a couple of Facebook support groups. I thought it would be easier to be in a group, some as large as 2187 people, some as small as 30, to “listen” and learn. But I got drawn in. I got to know the people who post a lot. Most people in the group don’t actually post, it seems to be the same 40 or 50 of us that post. But I know everyone reads it and gets something out of being there. What I did not anticipate happening was that I would become friends with people. I thought I would just skate by as a nameless reader and I would pick up some knowledge from women who had been where I am at. But that’s not what happened. I started to care. I started to share my own experiences. I started private messaging people and people messaged me. We have each other’s backs. We are “there” anytime day or night. My 3:00 am freak out? The group has me covered, someone is always up! And they are probably having the same freak out as me, What happens when I die???? Ahhhhhh. Someone is always there to talk you off the ledge. And sometimes, I’ve been the one talking someone off the ledge. I found my compassion growing all the time.
And so I felt content with my place in the Cancer community. Until...my friends started to die. Friends that I had talked to just days ago are suddenly gone. I wake up and go to the group and see a message from a husband, a son, a mom...Sorry to let you know...passed away last night. What?!? But I just talked to them. They were doing ok! How does this keep happening? Those of us left behind talk about this. How did we not know things were so bad? We have come to understand that everyone still has hope, even at the end. They don’t want to speak it aloud and give it any power. We see one thing on Facebook, maybe a picture of them smiling and eating ice cream, so we think; “Oh, look at that! She looks great today.” But the reality is that the photo was taken at that one good minute she had that day. But she still hoped. And to speak to moving on when we feel we are not ready to, well, that’s some hard shit.
There are a few of my friends who are able to voice the reality. And those posts are hard to read. Knowing your friends are entering hospice and are ready to “transition” to the “next world” brings home the reality of the disease. And then, in the blink of an eye, they are gone. Gone from our sight. I’ve been losing so many friends that I now keep a list. I know, that’s sad, right? But I want to pray for them and I want to not forget them. Ever. They offered me great advice and unconditional love and acceptance and I found such strength and courage from them. And I know, one day, hopefully in the very distant future, I will be the one smiling with an ice cream cone and gone the next day. I hope to be as brave as those who have gone before me. I hope God will give me the strength. “I can do all things through Christ who strengthens me.” Philippians 4:13
And even though these sad thoughts keep swirling around me, I can not dwell in the sadness. Not today. Not when I am holding a miracle, my grandson Jack. God is good. All the time. We just have to accept that our fate is in His hands and He knows what is best. I read something funny in a book Kara’s friend Hopps gave me, and let’s end this post on a high note. “When it’s hard to trust in God, and you’d rather do things your way- it’s good to ask yourself a simple question: “Self, how many universes have you created?” If the answer is “No Universes,” than just let God handle things. Until next time, Sue
Baby Jack has arrived! September 24th, 8:00 am, 8 lbs 1 oz. I am finally a Grandma. I knew this would be exciting, but nothing prepares you for the utter joy you feel when you hold your grandchild for the very first time. Of course I cried- tears of joy. Holding him and rocking him I couldn’t help but think how this almost didn’t happen for me. There were so many moments, days, weeks, even months, when I didn’t think I would live to see this moment. The whole Cancer experience took me down such dark and gloomy roads, roads that led to nowhere good. Roads that led away from a happy life and to a sad, lonely place. But, thanks to modern medicine, I am still here!
I truly believe that if I didn’t have the last radiation I would not be here now. At the fast rate the tumor in my lung was growing, I didn’t have much more time. I remember last December thinking I would not be here for another Christmas. I never told anyone that, but it’s how I felt. You think of all the things you won’t be here for when you have a terminal illness. Weddings. Grandchildren. Holidays. It’s so easy to slip into the despair of your situation. But then I remembered a quote that stuck in my mind from reading Anne of Green Gables. Anne asks Marilla, “Can’t you even imagine you’re in the depths of despair?” To which Marilla replies. “No I cannot. To despair is to turn your back on God.” Who am I to turn my back on God? God has never turned His back on me. I know when horrible things happen that we tend to either blame God for allowing it to happen, or blame Him for making it happen. I never felt that way. Of course I was not at all happy with the Cancer, but I never blamed God. Sometimes God doesn’t change what is happening to you because He is trying to change your heart. Maybe God wanted to change my heart. Maybe He is using me to show others the way. I like to think He is. Which is why I continue to blog. I like to think that what I share in some way is helpful to someone. And perhaps, that is God’s purpose of me having Cancer.
I’ve really been struggling with something lately, and have been praying for guidance. I am trying to find my place in the Cancer community. I never knew there was such a thing, but you learn a lot once you have to. It’s a bit like running down the pier getting ready to jump in the lake when suddenly someone comes up behind you and pushes you in. It’s suddenly sink or swim time, whether you were ready or not. When I first was diagnosed in 2014 with Stage 1, I didn’t join any support groups. I didn’t feel like I needed to. The doctors were optimistic and I felt like I was getting all the support I needed from family and friends. But that all changed when I was diagnosed in 2016 with Stage 4.
Stage 4, MBC (Metastatic Breast Cancer) is a whole new thing. It’s like comparing Little League baseball to the World Series. Or the Kindergarten Christmas program to a Broadway show. It’s just that different. And so I joined a support group that was just for MBC women. And I loved it. For awhile. It was hard to go every week and hear from women who were further along their diagnosis than I was. I still felt good back then. I had not started the rough chemo and I still believed I could “beat it”. Sitting with other MBC women in varying stages of the disease was both hard and enlightening. And then one day, I couldn’t do it. I could not bring myself to go and sit there and watch these women that I was becoming friends with get worse week after week. I was shocked by my own actions. I have always been so compassionate. And I still was. But the self-preservation gene kicked in and I stopped going. I found each week I went I came home more depressed. I knew I was not in a good place mentally to go to the meetings.
Fast forward one year. I never have gone back to the group, though I sometimes hear from a couple of them and will on occasion go to breakfast together. The women I met there are amazing Cancer Warriors, and I loved them for it. I just couldn’t do it myself. I needed to distance myself from what the end will probably look like for me. That is a hard place to sit yourself, looking at your end. If I looked close enough, what I did see in the women was strength and even peace with their destiny. I just wasn’t ready to be there. I’m still not. And I’m trying to be ok with that.
What I did do was join a couple of Facebook support groups. I thought it would be easier to be in a group, some as large as 2187 people, some as small as 30, to “listen” and learn. But I got drawn in. I got to know the people who post a lot. Most people in the group don’t actually post, it seems to be the same 40 or 50 of us that post. But I know everyone reads it and gets something out of being there. What I did not anticipate happening was that I would become friends with people. I thought I would just skate by as a nameless reader and I would pick up some knowledge from women who had been where I am at. But that’s not what happened. I started to care. I started to share my own experiences. I started private messaging people and people messaged me. We have each other’s backs. We are “there” anytime day or night. My 3:00 am freak out? The group has me covered, someone is always up! And they are probably having the same freak out as me, What happens when I die???? Ahhhhhh. Someone is always there to talk you off the ledge. And sometimes, I’ve been the one talking someone off the ledge. I found my compassion growing all the time.
And so I felt content with my place in the Cancer community. Until...my friends started to die. Friends that I had talked to just days ago are suddenly gone. I wake up and go to the group and see a message from a husband, a son, a mom...Sorry to let you know...passed away last night. What?!? But I just talked to them. They were doing ok! How does this keep happening? Those of us left behind talk about this. How did we not know things were so bad? We have come to understand that everyone still has hope, even at the end. They don’t want to speak it aloud and give it any power. We see one thing on Facebook, maybe a picture of them smiling and eating ice cream, so we think; “Oh, look at that! She looks great today.” But the reality is that the photo was taken at that one good minute she had that day. But she still hoped. And to speak to moving on when we feel we are not ready to, well, that’s some hard shit.
There are a few of my friends who are able to voice the reality. And those posts are hard to read. Knowing your friends are entering hospice and are ready to “transition” to the “next world” brings home the reality of the disease. And then, in the blink of an eye, they are gone. Gone from our sight. I’ve been losing so many friends that I now keep a list. I know, that’s sad, right? But I want to pray for them and I want to not forget them. Ever. They offered me great advice and unconditional love and acceptance and I found such strength and courage from them. And I know, one day, hopefully in the very distant future, I will be the one smiling with an ice cream cone and gone the next day. I hope to be as brave as those who have gone before me. I hope God will give me the strength. “I can do all things through Christ who strengthens me.” Philippians 4:13
And even though these sad thoughts keep swirling around me, I can not dwell in the sadness. Not today. Not when I am holding a miracle, my grandson Jack. God is good. All the time. We just have to accept that our fate is in His hands and He knows what is best. I read something funny in a book Kara’s friend Hopps gave me, and let’s end this post on a high note. “When it’s hard to trust in God, and you’d rather do things your way- it’s good to ask yourself a simple question: “Self, how many universes have you created?” If the answer is “No Universes,” than just let God handle things. Until next time, Sue
September 1, 2017
By now you all know the good news- the Peach is dead! The tumor is still there, but it is all dead tissue. Time for the happy dance- everyone join in now: Ding Dong the peach is dead! Which old peach? The Cancer peach! Ding Dong the Cancer peach is dead! I, for one, was very surprised at the news. I didn’t even know what to think. I had become so use to getting bad news that when some good news finally came all I could think was; are you sure? And for how long will it be gone? When will it come back? When will I start feeling good? Whoa--slow down! So many questions and thoughts. Luckily, my new oncologist is fantastic!
Let me back up a bit to fill you in on the new oncologist. I found her by seeing her listed in Chicago magazine as one of the top oncologists in Chicago. She is the oncologist who took care of Cardinal Bernardin when he had Cancer. I figured if she was good enough for the Catholic Archdiocese, she is good enough for me. In researching her I also found out that she is still a nun. I had never met a nun oncologist before and was looking forward to it. I loved everything about her from the very first minute I met her. She was so kind and gentle. And I could tell she listened when I talked. She said she wanted to get to know me and what my expectations were. Did I want to be aggressive in my treatment choices, or was I looking more for palliative care? And so we began.
She ordered a couple of tests to see where things were at following radiation. Then came the exciting news- the tumor was dead. Hallelujah! She went on to say that there were a couple of “areas of concern” that could present problems down the line, but for now, there was no sign of active cancer. I am, as fellow Cancer patients say, NED- which means No Evidence of Disease. So why didn’t I feel more excited? Why wasn’t I feeling a huge relief? Maybe it’s because the last time I finished Cancer treatment the bell was rung and I was announced to be: CANCER FREE. Well, as things turned out just a short 17 months later, that wasn’t true. So how do I know they are true now? After I posted the exciting news on my Facebook I got such wonderful well wishes from my friends. We had all prayed hard, and it seemed to have worked. And yet, I still felt no relief. I also was nervous to tell people how I felt. Even now, writing this blog, I am afraid of some people’s reactions. Will people think, “Come on Sue, this is great news! Don’t be a drama queen! You’re cured!” But you see, I am not cured. I will never be cured. MBC (Metastatic Breast Cancer) is incurable. So I feel that what I have been given is a short reprieve of sorts. My oncologist explained it best when she said “You still have Cancer, it’s just that it is so small in your body right now that it doesn’t show up on a scan. It won’t go away, it’s incurable”, I will always have Cancer. It’s just a matter of time until it grows big enough to be seen and treated.
Now I am left trying to figure out how to get back to living my life in such a way that I don’t dwell on the inevitable. It could come back in a few weeks, a few months, maybe even a few years. No one knows. So do I just try to live in 3 month increments? I will get scanned every three months to check for the return of Cancer. So every three months I will experience Scanxiety, waiting to hear the results. Here’s a little side story for you. When going over the recent Pet scan results my new oncologist, Dr. G, commented about my fractured rib. To which I replied, What fractured rib??? Are you kidding?? My faith in medicine just keeps on slipping further and further down the slippery slope. You mean to say I have a fractured rib and no one ever bothered to tell me? Just like the paralyzed diaphragm? Or just like the suspicious scan that should have been followed up on?? UGH! No wonder I’ve had such intense pain!
This is so frustrating. It is hard enough dealing with a Cancer diagnosis, but then to be expected to keep tabs on all of the tests and results and make educated choices- it’s just too much. I want to trust my medical team, not second guess them. So where does this leave me? Cancer free? Not really- more like Cancer on Hold. I will gladly take it though. It is, of course, much better than the tumor still growing. Speaking of the peach- let me take a moment to explain the actual situation with the peach. The radiation killed the tumor tissue. It is dead, and won’t come back to life. However, the peach, in all it’s glory, remains in my lung, taking up half of it. It will not do a disappearing act. I thought once the radiation killed the tumor it would disintegrate. Nope- it is still there, hanging out in my lung. Just dead, and bothering me. I will always have some breathing issues now, but if that’s all I have I will be grateful.
Next up will be some testing on my thyroid gland because my blood test showed numbers that are through the roof high. My oncologist is worried that the thyroid gland may have been in the radiation field, thereby causing some damage. I meet with the doctor on Wednesday to figure out what to do next. Certainly more testing. That’s the risk you take when you agree to radiation. There is always the chance it will harm other organs. But it was, for me, a risk worth taking. I probably wouldn’t be here right now if i didn’t do the radiation. My tumor was growing so fast, and I am so grateful that the radiation stopped it- for however long that may last. Thank you for all your support. Until next time, Sue
August 6, 2017
Here we are at the end of summer and it’s been forever since I have written. It’s been hard to put together any cohesive thoughts, much less a blog that will make sense to everyone. My own thoughts are still whizzing around in my head like a pinball bouncing from place to place. Here is the basic medical news. When last I wrote I was headed to the radiation oncologist. Just a few days ago I finished my final radiation treatment. I did 30 treatments in a 6 week time span. Unlike my first experience with radiation two years ago, this one was quite painful actually. The radiation itself wasn’t so bad (until the end when the burning sensation begins), but the positioning on the table was horrible. I had to lay on my back with my hands over my head inside a plastic mold they made to fit my body. Once on the table, I was immobilized. I could not move if I wanted to. They strapped down my legs and my arms. The problem for me is that I have fibromyalgia, which makes it painful to move sometimes. I had to endure 25 minutes on that table, five days in a row. For me the pain was in my shoulder and at the incision site. By the end of the 25 minutes I was crying. That soft, whimpery kind of cry.
We won’t know if the radiation worked until I have a new scan in about three weeks. Along the way the oncologist said the tumor did shrink “a little”, making my peach more like a large lime- which seems about the same to me. Still, I will take the little bit of shrinkage as a win. It also “appeared” to become less dense, but he wasn’t certain. Hopefully the radiation worked and was worth the pain and discomfort.
I did find out something new and interesting during the radiation treatments. When I finished radiation the first time, in October 2014, my radiation oncologist had ordered a Ct scan because she suspected I had pneumonia caused by the radiation. After the scan she told me I did, indeed, have pneumonia and treated me for it. Nothing was mentioned about follow up testing and I went on my way. My new radiation oncologist, however, questioned the pneumonia diagnosis. He said that if I did have a history of radiation pneumotitis it would change the way he would treat me this time. He asked me to get a copy of the 2014 scan and the report issued by the radiologist at that time. What happened next was both unbelievable and very disappointing. The new radiation oncologist called me into his office to have me take a look at the scan from 2014. Not only was there absolutely no sign whatsoever of pneumonia, there was, instead, signs of the cancer I now have. Yep, there was a spot in my right lung that the radiologist even commented on in his 2014 report. It was recommended that I have a follow up Ct in 3 months to keep an eye on the area of concern. I sat there speechless. How can this be happening?
It was, and still is, a lot to process. So for 17 months I lived my life believing that I was Cancer free- which I now know I was not. The Cancer was still there- in my lung. It was never gone. It laid low and quiet just waiting and growing. I try not to think about the what if type of things. I don’t know if it even matters. I don’t even know if I would be in a different situation right now. If we had known about the new Cancer in my lung would my treatments have been different? Or would I be in exactly in the same spot I am in now? I guess we will never know.
Someone asked me the other day when I would be done with my treatments. The answer is: When I die. I didn’t actually say that, because I am a nice person, but that is the answer. I don’t understand what people don’t get about a terminal illness. I will have to be in treatments for the rest of my life. I don’t know for sure what the next step will be. I meet my new oncologist this Thursday. My old oncologist switched to another hospital and does not accept my insurance. I was pretty disappointed about that. I’ve been going to him for a year now, and I really trusted him and was comfortable with him. But now I had to find a new oncologist, again. This will be number four. Sigh.
I will keep you posted on how I like the new doctor and what treatment she will recommend. In the mean time, I keep hoping to find a way out of the rabbit hole that I feel like I am falling down. It’s hard. And isolating. And scary. And I don’t know if I can even explain it to anyone who hasn’t been there. A “cancer friend” of mine said the other day that “living in a constant state of fear is...breathtakingly miserable.” I couldn’t agree more. Until next time, Suz
Here we are at the end of summer and it’s been forever since I have written. It’s been hard to put together any cohesive thoughts, much less a blog that will make sense to everyone. My own thoughts are still whizzing around in my head like a pinball bouncing from place to place. Here is the basic medical news. When last I wrote I was headed to the radiation oncologist. Just a few days ago I finished my final radiation treatment. I did 30 treatments in a 6 week time span. Unlike my first experience with radiation two years ago, this one was quite painful actually. The radiation itself wasn’t so bad (until the end when the burning sensation begins), but the positioning on the table was horrible. I had to lay on my back with my hands over my head inside a plastic mold they made to fit my body. Once on the table, I was immobilized. I could not move if I wanted to. They strapped down my legs and my arms. The problem for me is that I have fibromyalgia, which makes it painful to move sometimes. I had to endure 25 minutes on that table, five days in a row. For me the pain was in my shoulder and at the incision site. By the end of the 25 minutes I was crying. That soft, whimpery kind of cry.
We won’t know if the radiation worked until I have a new scan in about three weeks. Along the way the oncologist said the tumor did shrink “a little”, making my peach more like a large lime- which seems about the same to me. Still, I will take the little bit of shrinkage as a win. It also “appeared” to become less dense, but he wasn’t certain. Hopefully the radiation worked and was worth the pain and discomfort.
I did find out something new and interesting during the radiation treatments. When I finished radiation the first time, in October 2014, my radiation oncologist had ordered a Ct scan because she suspected I had pneumonia caused by the radiation. After the scan she told me I did, indeed, have pneumonia and treated me for it. Nothing was mentioned about follow up testing and I went on my way. My new radiation oncologist, however, questioned the pneumonia diagnosis. He said that if I did have a history of radiation pneumotitis it would change the way he would treat me this time. He asked me to get a copy of the 2014 scan and the report issued by the radiologist at that time. What happened next was both unbelievable and very disappointing. The new radiation oncologist called me into his office to have me take a look at the scan from 2014. Not only was there absolutely no sign whatsoever of pneumonia, there was, instead, signs of the cancer I now have. Yep, there was a spot in my right lung that the radiologist even commented on in his 2014 report. It was recommended that I have a follow up Ct in 3 months to keep an eye on the area of concern. I sat there speechless. How can this be happening?
It was, and still is, a lot to process. So for 17 months I lived my life believing that I was Cancer free- which I now know I was not. The Cancer was still there- in my lung. It was never gone. It laid low and quiet just waiting and growing. I try not to think about the what if type of things. I don’t know if it even matters. I don’t even know if I would be in a different situation right now. If we had known about the new Cancer in my lung would my treatments have been different? Or would I be in exactly in the same spot I am in now? I guess we will never know.
Someone asked me the other day when I would be done with my treatments. The answer is: When I die. I didn’t actually say that, because I am a nice person, but that is the answer. I don’t understand what people don’t get about a terminal illness. I will have to be in treatments for the rest of my life. I don’t know for sure what the next step will be. I meet my new oncologist this Thursday. My old oncologist switched to another hospital and does not accept my insurance. I was pretty disappointed about that. I’ve been going to him for a year now, and I really trusted him and was comfortable with him. But now I had to find a new oncologist, again. This will be number four. Sigh.
I will keep you posted on how I like the new doctor and what treatment she will recommend. In the mean time, I keep hoping to find a way out of the rabbit hole that I feel like I am falling down. It’s hard. And isolating. And scary. And I don’t know if I can even explain it to anyone who hasn’t been there. A “cancer friend” of mine said the other day that “living in a constant state of fear is...breathtakingly miserable.” I couldn’t agree more. Until next time, Suz
May 20, 2017
So much to catch you all up on. Most of you also see my Facebook posts (find me at Suz Fetta Fleharty) so you already know the devastating news. The peach was not removed. Not at all. Not one tiny bite of it. It remains intact, in my apparently nice, warm, homey environment- my lung. Once again, I remain on the wrong side of the percentage game. I am in the 10% group of not being able to remove the peach. But let me back up a bit.
The week before the surgery was heavenly. As planned, me and my two daughters, Kaitlin and Kara, spent 4 days in Disney World together. We did everything we wanted to do, and more. We ate some of the best food ever, took relaxing afternoon naps, and held hands walking through the parks. The highlight of our trip happened one evening while Kara was in the bath and I was laying on the bed next to Kaitlin waiting for our room service order (late night milk and cookies), I was rubbing Kaitlin’s ever growing tummy when….Jack moved! I felt my little grandson kick. He was saying hello to me! I kept rubbing Kt’s tummy and kissed it too. This was a moment we would not have experienced if we weren’t all together on this extended slumber party. I was over the moon. Thank you Jack! And thank you, God, for making this happen.
In the mornings Kara and I would go have a quiet breakfast together while Kaitlin slept in a little longer. Our trip was filled with so many quality moments, we snatched little pieces of time and forged new memories. I watched my daughters spend time together laughing and remembering past vacations. Periodically we would bring up our hopes about future trips. While the future is, in fact, quite tenuous, we haven’t given up on what it may hold for our family. We aren’t giving up. We continue to hope. We cautiously hope for the best but prepare for the worst.
And another setback came on our return. The unsuccessful peach-ectomy. Though the doctors felt confident and said there was a 90% success rate for the surgery, fate decided to drop me in the 10% bucket. Ugh. The day of surgery started off less than ideal. After showing up at the required 9:00 am time, we proceeded to wait (with no food or drink for me) for the next 5 hours before they even took me to prepare for the surgery. I will spare you the details, of which there are many, that were annoying. The details included a verbal argument between the surgical staff and the anesthesia staff in regards to whether or not I was eligible for an epidural. Nothing boosts your confidence quite like hearing the two teams disagree about your care mere moments before they put you under.
Even though they were unable to remove any or all of the peach, it still took just over 4 hours. In the end, the surgeon decided there was too much risk involving both the blood vessel to the tumor, the main chest artery, and the unforeseen involvement of the tumor vs the windpipe. That last one didn’t show up on any scan. And so, they looked around, took tissue and lymph nodes for further biopsy, inserted two chest tubes and closed me up. When I woke up in recovery I asked the nurse if they got the tumor out and he said he would go get my family.
I could tell the moment I saw the kids that it didn’t go well. I could tell the girls had been crying. That was more heartbreaking to me then the actual news. Kaitlin slowly approached my bed and held Kara’s hand, than mine, She tried so valiantly to put on a brave face to deliver the news. It went something like this; the bad news is that they couldn’t get the tumor, but there is still hope and that doesn’t mean I won’t respond to other treatments and we won’t give up and so on. I realized she was sounding more like a mom in that moment than I was. I felt like screaming or crying or just closing a door and running away, but I found myself frozen. Everything hurt too much to cry. The pain in my chest and back was so severe when I woke up that I couldn’t even move. They gave me more pain meds than took me to ICU.
The next few days were spent in a drug induced haze. I felt devastated. Hopeless. Frightened. Confused. Defeated. It has taken awhile for this all to be processed. I’m still not done trying to figure things out. The surgeon is done with me now, I won’t see him again. I went back to my primary oncologist and he adjusted my meds since I was still in severe pain. I went and had the stitches removed yesterday, ten days after the surgery. I have an appointment next week with the radiation oncologist to set up a treatment plan. I feel like I am just going through the motions right now. The surgery had allowed me to briefly have hope, and now that’s gone.
I need time to find another way to hope again. Or at least another way to deal. I need to find my way back to being that “bride of amazement” of life. Finding a way of truly living my life, not just getting up each day and calling it living. After I get my treatment plan I will make some plans of my own. Seeing things, going places, spending time with the kids...that’s the treatment plan for my heart and soul. And that plan can be just as, or maybe even more, important than the six week radiation regimen I will most likely embark on. In the meantime, I so appreciate all the love, prayers, and support I get from you, my readers. I am looking at doing some road trips this summer, if treatment will allow, and would love to hear your ideas of must see places in America and/or Canada. I’ve been lucky enough to have followed my wandering spirit and have been to all 50 states, but there is so much to see yet. If anyone has a vacation/lake house that you would like for us to”borrow” for a few days, just let me know, I'm sure I can help you out! Until next time, Sue
So much to catch you all up on. Most of you also see my Facebook posts (find me at Suz Fetta Fleharty) so you already know the devastating news. The peach was not removed. Not at all. Not one tiny bite of it. It remains intact, in my apparently nice, warm, homey environment- my lung. Once again, I remain on the wrong side of the percentage game. I am in the 10% group of not being able to remove the peach. But let me back up a bit.
The week before the surgery was heavenly. As planned, me and my two daughters, Kaitlin and Kara, spent 4 days in Disney World together. We did everything we wanted to do, and more. We ate some of the best food ever, took relaxing afternoon naps, and held hands walking through the parks. The highlight of our trip happened one evening while Kara was in the bath and I was laying on the bed next to Kaitlin waiting for our room service order (late night milk and cookies), I was rubbing Kaitlin’s ever growing tummy when….Jack moved! I felt my little grandson kick. He was saying hello to me! I kept rubbing Kt’s tummy and kissed it too. This was a moment we would not have experienced if we weren’t all together on this extended slumber party. I was over the moon. Thank you Jack! And thank you, God, for making this happen.
In the mornings Kara and I would go have a quiet breakfast together while Kaitlin slept in a little longer. Our trip was filled with so many quality moments, we snatched little pieces of time and forged new memories. I watched my daughters spend time together laughing and remembering past vacations. Periodically we would bring up our hopes about future trips. While the future is, in fact, quite tenuous, we haven’t given up on what it may hold for our family. We aren’t giving up. We continue to hope. We cautiously hope for the best but prepare for the worst.
And another setback came on our return. The unsuccessful peach-ectomy. Though the doctors felt confident and said there was a 90% success rate for the surgery, fate decided to drop me in the 10% bucket. Ugh. The day of surgery started off less than ideal. After showing up at the required 9:00 am time, we proceeded to wait (with no food or drink for me) for the next 5 hours before they even took me to prepare for the surgery. I will spare you the details, of which there are many, that were annoying. The details included a verbal argument between the surgical staff and the anesthesia staff in regards to whether or not I was eligible for an epidural. Nothing boosts your confidence quite like hearing the two teams disagree about your care mere moments before they put you under.
Even though they were unable to remove any or all of the peach, it still took just over 4 hours. In the end, the surgeon decided there was too much risk involving both the blood vessel to the tumor, the main chest artery, and the unforeseen involvement of the tumor vs the windpipe. That last one didn’t show up on any scan. And so, they looked around, took tissue and lymph nodes for further biopsy, inserted two chest tubes and closed me up. When I woke up in recovery I asked the nurse if they got the tumor out and he said he would go get my family.
I could tell the moment I saw the kids that it didn’t go well. I could tell the girls had been crying. That was more heartbreaking to me then the actual news. Kaitlin slowly approached my bed and held Kara’s hand, than mine, She tried so valiantly to put on a brave face to deliver the news. It went something like this; the bad news is that they couldn’t get the tumor, but there is still hope and that doesn’t mean I won’t respond to other treatments and we won’t give up and so on. I realized she was sounding more like a mom in that moment than I was. I felt like screaming or crying or just closing a door and running away, but I found myself frozen. Everything hurt too much to cry. The pain in my chest and back was so severe when I woke up that I couldn’t even move. They gave me more pain meds than took me to ICU.
The next few days were spent in a drug induced haze. I felt devastated. Hopeless. Frightened. Confused. Defeated. It has taken awhile for this all to be processed. I’m still not done trying to figure things out. The surgeon is done with me now, I won’t see him again. I went back to my primary oncologist and he adjusted my meds since I was still in severe pain. I went and had the stitches removed yesterday, ten days after the surgery. I have an appointment next week with the radiation oncologist to set up a treatment plan. I feel like I am just going through the motions right now. The surgery had allowed me to briefly have hope, and now that’s gone.
I need time to find another way to hope again. Or at least another way to deal. I need to find my way back to being that “bride of amazement” of life. Finding a way of truly living my life, not just getting up each day and calling it living. After I get my treatment plan I will make some plans of my own. Seeing things, going places, spending time with the kids...that’s the treatment plan for my heart and soul. And that plan can be just as, or maybe even more, important than the six week radiation regimen I will most likely embark on. In the meantime, I so appreciate all the love, prayers, and support I get from you, my readers. I am looking at doing some road trips this summer, if treatment will allow, and would love to hear your ideas of must see places in America and/or Canada. I’ve been lucky enough to have followed my wandering spirit and have been to all 50 states, but there is so much to see yet. If anyone has a vacation/lake house that you would like for us to”borrow” for a few days, just let me know, I'm sure I can help you out! Until next time, Sue
April 29, 2017
I had a frustrating few days this week, and it all started with my trip to the hospital on Wednesday for some pre-surgery visits. After getting my blood drawn, never a fun thing, I went to have yet another CT scan (which involves getting an IV). I’m not sure why I had to check in an hour early, there was nothing required of me when I got there. But there I sat, with my daughter Kaitlin, for an hour and a half because they were running late. While in the waiting area we witnessed an angry exchange between two people waiting for their scans. One woman was coughing violently and frequently. I didn’t think anything of it, since I myself am prone to coughing fits brought on by my peach. But another woman took great offense to the coughing and gave the cougher a dirty look.
Cougher: You can stop giving me dirty looks- I’m not contagious. I have lung cancer.
Annoyed woman: What? I, I didn’t say anything!
Cougher: You didn’t have to, I can tell by your look that you're disgusted by my coughing.
Annoyed woman: Mumbled something quietly and looked away.
And the rest of us just sat there in awkward silence. After the CT scan I went to meet the anesthesiologist. She explained the procedure and all of the risks and then sent in the nurse to...draw more blood! Ahhhhh. Getting stuck with a needle three times in one day was not my idea of a good time. Ugh.
Next up was my last stop of the day, the surgeon. I waited…. Wait for it… 2 hours and 15 minutes to see the surgeon! That was just crazy. We all know you often get stuck waiting at a doctor’s office, hence the placement of the various Family Circle type magazines, circa 1989. Or Golf Digest. Why on earth is there always a Golf Digest??? Maybe a lot of Cancer patients are secretly longing to play the links. I just don’t know. Or maybe we are meant to leaf through the Golf Digest to get a better idea of what our doctors’ lives are like. Have you ever read a Golf Digest? No? Well, let me tell you about the most recent edition. There was an article titled “Men are using golf to hide their affairs” alongside another article about how South Korea has turned a golf course into a missile defense site. What I would appreciate in the waiting room is actual material about Cancer to read. It would benefit me much more to learn about upcoming immunotherapy trials then to read about which golfer is dating a Sports Illustrated swimsuit model. But alas, I once again digress.
The meeting with the surgeon was informative and brief. And scary as all hell. The new CT scan shows that the tumor has indeed “encased” my main chest artery. Now instead of simply rerouting it, it will have to be cut and patched. Which, the surgeon said, increases my risk of bleeding. If things get out of control in the operating room there is a “remote chance” of me being put on an ECMO machine, but “probably just overnight” he assured me. An ECMO machine pumps the blood through your body so your heart and lungs can rest. He said all this so matter of factly, not noticing that I was inwardly freaking out.
I was also told there is a small chance that he won’t be able to remove the entire peach. If, once he gets in there, he finds he can not remove ALL of the peach, he will simply close me back up and not remove any of it. This would really suck, to have the recovery without the benefit of the proposed surgery. I questioned this new information and he said that there is no proven medical fact that says removing some of a tumor will lengthen my life. “It’s all or nothing.” So I guess the severe chest pain I get is not enough reason to remove the frickin’ peach??? Oh that’s right, now I remember. Not ONE doctor I have seen feels that my chest pain is related to my tumor. I am to believe that it’s just a “coincidence” that my severe pain that started when I found the tumor just happens to be at the exact same spot as the tumor. Go figure! It was exactly this chest pain that made me first go to my doctor. She ordered a chest x-ray thinking to find something like pneumonia. But as we all know, what we found was the Cancer. That “coincidental” chest pain is what has so far saved my life. If I didn’t have that pain I would never have gone to the doctor in the first place! AHHH!
So what have we learned this week? Well, we have learned that Golf Digest does not in fact comfort, or interest, the average Cancer patient. We learned that a peach in your chest does NOT cause pain, it must all be in my head. And finally, we learned that a Cancer cough scares people, so please try not to display your sickness the next time you are at, let’s say, a doctor’s office!! Please, hide your Cancer from everyone, it’s so rude and annoying for people to see. I’ve learned that as a Cancer patient I am put into one of two categories; Either people see me and see Cancer and turn uncomfortably away, or they see right through me because they are scared and don’t want to put a face with the Cancer word. Luckily for me there is a third category, the family and friends who care about me category where they see me for who I am, a Cancer patient doing the best she can, one day at a time. Until next time, Sue
I had a frustrating few days this week, and it all started with my trip to the hospital on Wednesday for some pre-surgery visits. After getting my blood drawn, never a fun thing, I went to have yet another CT scan (which involves getting an IV). I’m not sure why I had to check in an hour early, there was nothing required of me when I got there. But there I sat, with my daughter Kaitlin, for an hour and a half because they were running late. While in the waiting area we witnessed an angry exchange between two people waiting for their scans. One woman was coughing violently and frequently. I didn’t think anything of it, since I myself am prone to coughing fits brought on by my peach. But another woman took great offense to the coughing and gave the cougher a dirty look.
Cougher: You can stop giving me dirty looks- I’m not contagious. I have lung cancer.
Annoyed woman: What? I, I didn’t say anything!
Cougher: You didn’t have to, I can tell by your look that you're disgusted by my coughing.
Annoyed woman: Mumbled something quietly and looked away.
And the rest of us just sat there in awkward silence. After the CT scan I went to meet the anesthesiologist. She explained the procedure and all of the risks and then sent in the nurse to...draw more blood! Ahhhhh. Getting stuck with a needle three times in one day was not my idea of a good time. Ugh.
Next up was my last stop of the day, the surgeon. I waited…. Wait for it… 2 hours and 15 minutes to see the surgeon! That was just crazy. We all know you often get stuck waiting at a doctor’s office, hence the placement of the various Family Circle type magazines, circa 1989. Or Golf Digest. Why on earth is there always a Golf Digest??? Maybe a lot of Cancer patients are secretly longing to play the links. I just don’t know. Or maybe we are meant to leaf through the Golf Digest to get a better idea of what our doctors’ lives are like. Have you ever read a Golf Digest? No? Well, let me tell you about the most recent edition. There was an article titled “Men are using golf to hide their affairs” alongside another article about how South Korea has turned a golf course into a missile defense site. What I would appreciate in the waiting room is actual material about Cancer to read. It would benefit me much more to learn about upcoming immunotherapy trials then to read about which golfer is dating a Sports Illustrated swimsuit model. But alas, I once again digress.
The meeting with the surgeon was informative and brief. And scary as all hell. The new CT scan shows that the tumor has indeed “encased” my main chest artery. Now instead of simply rerouting it, it will have to be cut and patched. Which, the surgeon said, increases my risk of bleeding. If things get out of control in the operating room there is a “remote chance” of me being put on an ECMO machine, but “probably just overnight” he assured me. An ECMO machine pumps the blood through your body so your heart and lungs can rest. He said all this so matter of factly, not noticing that I was inwardly freaking out.
I was also told there is a small chance that he won’t be able to remove the entire peach. If, once he gets in there, he finds he can not remove ALL of the peach, he will simply close me back up and not remove any of it. This would really suck, to have the recovery without the benefit of the proposed surgery. I questioned this new information and he said that there is no proven medical fact that says removing some of a tumor will lengthen my life. “It’s all or nothing.” So I guess the severe chest pain I get is not enough reason to remove the frickin’ peach??? Oh that’s right, now I remember. Not ONE doctor I have seen feels that my chest pain is related to my tumor. I am to believe that it’s just a “coincidence” that my severe pain that started when I found the tumor just happens to be at the exact same spot as the tumor. Go figure! It was exactly this chest pain that made me first go to my doctor. She ordered a chest x-ray thinking to find something like pneumonia. But as we all know, what we found was the Cancer. That “coincidental” chest pain is what has so far saved my life. If I didn’t have that pain I would never have gone to the doctor in the first place! AHHH!
So what have we learned this week? Well, we have learned that Golf Digest does not in fact comfort, or interest, the average Cancer patient. We learned that a peach in your chest does NOT cause pain, it must all be in my head. And finally, we learned that a Cancer cough scares people, so please try not to display your sickness the next time you are at, let’s say, a doctor’s office!! Please, hide your Cancer from everyone, it’s so rude and annoying for people to see. I’ve learned that as a Cancer patient I am put into one of two categories; Either people see me and see Cancer and turn uncomfortably away, or they see right through me because they are scared and don’t want to put a face with the Cancer word. Luckily for me there is a third category, the family and friends who care about me category where they see me for who I am, a Cancer patient doing the best she can, one day at a time. Until next time, Sue
April 23, 2017
I’ve had a good couple of weeks mentally, and have endured some not so good days physically lately. My last chemo treatment was March 13, so being off of chemo has given me back a lot of the energy I lose while on it. Also gone are the stomach issues, which is a huge relief. Still present, almost every day, are the chest pains. Some days I can suck it up and carry on, but others the pain is about an 8 or 9 and I have to lay down and take some Vicodin and Morphine. But I am muddling through and looking forward to a summer of recovery.
I met with the surgeon at the University of Chicago and he gave me the green light for the surgery. The “peach-ectomy” will be taking place on May 8th. I passed 3 out of 4 pulmonary function tests, so that was great news. Maybe if I had studied harder I would have passed them all! The test was rather amusing actually. They put you in this glass booth and have you blow into a tube. Sometimes you blow hard and fast, and other times hard and slow. The person administering the test called herself my “breathing coach”. She was hysterical. She made up little songs that she would sing during the test. Things like “You can do it, breathe hard and fast. Make it last. Hard and fast.” I kept laughing and screwing up the test. But in the end, I passed enough to get the surgery.
After the test I met with the surgeon, Dr. Ferguson. He is the top thoracic surgeon at the University of Chicago and has been doing this surgery for 30 years now. We really liked him. (My son Ryan was impressed that he drew a diagram of my lungs and the tumor upside down, so that the picture faced us.) In the diagram he also drew the two issues that will make my surgery slightly more complicated. First, there is a blood vessel that leads right into the tumor, so that will have to be rerouted. Secondly, the tumor appears to either be pushing against the main artery in my chest, or it may have grown around the artery. He can’t tell from the scans and won’t know what he is facing until he opens me up. But either way, the main artery will need to be clamped off and rerouted too. He said the complications may increase my recovery time. I will be in ICU the first day and night, then in a regular room for about 4 days. Other fun facts are that I get a chest tube in for a few days, an epidural right before they put me to sleep (why can’t they do it right after I am knocked out?? ugh!) and that stays in for a few days too, and finally they will have to make a large incision on my right side and will spread my ribs to reach the lung. They will be removing the entire lobe that the tumor is in, along with some random lymph nodes to biopsy. The surgeon said the most painful part of recovery is both the ribs and the chest tube. Yippee skippe!
I decided to make the most of my time before the surgery by doing lots of fun things with the kids. My daughter Kaitlin recently left her very stressful job- which is a good thing. She said “my family needs me more then I need a job right now.” I am so proud to have raised such a caring and thoughtful young woman. She has made her family her priority and I couldn’t be happier. She has been spending lots of time with me and Kara, and it has been so much fun. As a matter of fact, the three of us will be taking that Disney World trip I had to cancel back in February when I was in the hospital. We will be going for five days the week before the surgery, which is perfect timing as I will be having too much fun to be freaking out about the surgery!
I’ve been thinking lately about how much a Cancer diagnosis affects the whole family, and not just the person with Cancer. My having Cancer has had a direct affect on the decisions my kids have made. Like Kaitlin quitting her job to be able to spend more time with me. Kara is always coming up with fun things for us to do, from planning little vacations so we can have more time together relaxing and having fun to convincing me to go to the Easter Sunrise Service because “you’ll be glad you did it later!” I think a Cancer diagnosis instills in us a need to do more and do it right. It has made each of us more attentive to one another, and more aware of the time we spend together. Even my introverted son Ryan has started doing things with us girls! Even though there is this dark cloud of Cancer hanging over our family, we find ways to move past it and find joy in the simple things of our life together. While I would not wish Cancer upon anyone, there has been some value found in it. What I would wish for others is to realize that spending time with those you love is the most important thing. No one ever died wishing they spent more time at work. As corny as it sounds, there is great value in the saying Carpe Diem. Seize the day! Make it count. We all have a limited number of days, and none of us know how many we have. Spend your time wisely. Make a conscious effort to do more of what makes you happy.
I want to leave you with a favorite poem that I have found to be very inspiring, especially during this difficult time. I have been reading the poem several times a day lately and have found it to be life-changing in the sense that every day I try to set out to do as the poem says, “When it’s over, I want to say: all my life I was a bride married to amazement.” What a wonderful thing to inspire to.
When Death Comes- by Mary Oliver
When death comes
like a hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
What is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth,
When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
Until next time, Sue
I’ve had a good couple of weeks mentally, and have endured some not so good days physically lately. My last chemo treatment was March 13, so being off of chemo has given me back a lot of the energy I lose while on it. Also gone are the stomach issues, which is a huge relief. Still present, almost every day, are the chest pains. Some days I can suck it up and carry on, but others the pain is about an 8 or 9 and I have to lay down and take some Vicodin and Morphine. But I am muddling through and looking forward to a summer of recovery.
I met with the surgeon at the University of Chicago and he gave me the green light for the surgery. The “peach-ectomy” will be taking place on May 8th. I passed 3 out of 4 pulmonary function tests, so that was great news. Maybe if I had studied harder I would have passed them all! The test was rather amusing actually. They put you in this glass booth and have you blow into a tube. Sometimes you blow hard and fast, and other times hard and slow. The person administering the test called herself my “breathing coach”. She was hysterical. She made up little songs that she would sing during the test. Things like “You can do it, breathe hard and fast. Make it last. Hard and fast.” I kept laughing and screwing up the test. But in the end, I passed enough to get the surgery.
After the test I met with the surgeon, Dr. Ferguson. He is the top thoracic surgeon at the University of Chicago and has been doing this surgery for 30 years now. We really liked him. (My son Ryan was impressed that he drew a diagram of my lungs and the tumor upside down, so that the picture faced us.) In the diagram he also drew the two issues that will make my surgery slightly more complicated. First, there is a blood vessel that leads right into the tumor, so that will have to be rerouted. Secondly, the tumor appears to either be pushing against the main artery in my chest, or it may have grown around the artery. He can’t tell from the scans and won’t know what he is facing until he opens me up. But either way, the main artery will need to be clamped off and rerouted too. He said the complications may increase my recovery time. I will be in ICU the first day and night, then in a regular room for about 4 days. Other fun facts are that I get a chest tube in for a few days, an epidural right before they put me to sleep (why can’t they do it right after I am knocked out?? ugh!) and that stays in for a few days too, and finally they will have to make a large incision on my right side and will spread my ribs to reach the lung. They will be removing the entire lobe that the tumor is in, along with some random lymph nodes to biopsy. The surgeon said the most painful part of recovery is both the ribs and the chest tube. Yippee skippe!
I decided to make the most of my time before the surgery by doing lots of fun things with the kids. My daughter Kaitlin recently left her very stressful job- which is a good thing. She said “my family needs me more then I need a job right now.” I am so proud to have raised such a caring and thoughtful young woman. She has made her family her priority and I couldn’t be happier. She has been spending lots of time with me and Kara, and it has been so much fun. As a matter of fact, the three of us will be taking that Disney World trip I had to cancel back in February when I was in the hospital. We will be going for five days the week before the surgery, which is perfect timing as I will be having too much fun to be freaking out about the surgery!
I’ve been thinking lately about how much a Cancer diagnosis affects the whole family, and not just the person with Cancer. My having Cancer has had a direct affect on the decisions my kids have made. Like Kaitlin quitting her job to be able to spend more time with me. Kara is always coming up with fun things for us to do, from planning little vacations so we can have more time together relaxing and having fun to convincing me to go to the Easter Sunrise Service because “you’ll be glad you did it later!” I think a Cancer diagnosis instills in us a need to do more and do it right. It has made each of us more attentive to one another, and more aware of the time we spend together. Even my introverted son Ryan has started doing things with us girls! Even though there is this dark cloud of Cancer hanging over our family, we find ways to move past it and find joy in the simple things of our life together. While I would not wish Cancer upon anyone, there has been some value found in it. What I would wish for others is to realize that spending time with those you love is the most important thing. No one ever died wishing they spent more time at work. As corny as it sounds, there is great value in the saying Carpe Diem. Seize the day! Make it count. We all have a limited number of days, and none of us know how many we have. Spend your time wisely. Make a conscious effort to do more of what makes you happy.
I want to leave you with a favorite poem that I have found to be very inspiring, especially during this difficult time. I have been reading the poem several times a day lately and have found it to be life-changing in the sense that every day I try to set out to do as the poem says, “When it’s over, I want to say: all my life I was a bride married to amazement.” What a wonderful thing to inspire to.
When Death Comes- by Mary Oliver
When death comes
like a hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
What is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth,
When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
Until next time, Sue
April 9, 2017
Happy Palm Sunday! It is a beautiful day outside and it makes me feel happy, so I thought now might be a good time to focus on the silver linings in my life. Believe it or not, there are some. The weight of the Cancer can be overwhelming, and often I get stuck in the quagmire of it all. But today, following an uplifting message from Pastor Chris at the Wayside Chapel, I am making a conscious effort to focus on some of the many good things in my life.
Let’s start with this exciting news- I am going to be a Grandma! I am over the moon. My daughter Kaitlin and her husband Jeremy are expecting a baby boy, Jack, in September. This fills me with such happiness and hope. I have been dreaming of this day for a long time. It was one of those things I was afraid I might miss out on, but Cancer did not win this time. Baby Jack wins! It is so nice to have something to look forward to- finally some good news for my family.
Two weeks ago, the week of the bad peach news, my daughter Kara decided that what we needed was a spontaneous trip to take our minds off of the Cancer for awhile. So we grabbed my friend Noreen, who always makes me laugh, and the three of us headed to the Smoky Mountains for a long weekend. It was perfect. The weather was great and the cabin we stayed in was beautiful and had an amazing view of the mountains. It was so relaxing and it renewed my spirit in a way only God’s nature can. It’s amazing how when your kids get older they sometimes know what you need more then you yourself even know.
I’ve also been thinking about the wonderful support I get from so many friends. I went to counseling this week (finally found someone I connect with to talk about this crazy Cancer life) and I was asked if I had a good support system. And hands down, the answer is a resounding yes. What has truly inspired me during this Cancer nightmare are the people who I don’t really know all that well, the people who are more “acquaintances” than friends really, who have done such amazing acts of kindness. You expect your close friends to be by your side, but what you don’t expect are other people stepping up to help you out, in big ways and small. From picking up groceries to sitting with you at chemo, the kindness shown to me has filled my heart with hope. So many times I feel this disease is isolating and solitary, and then someone comes along and joins you- they meet you where you are at- and I feel so blessed. We don’t always get to know that something we have done has made a difference in someone’s life, but I know now that even the littlest things can have a profound effect. Now, because of this Cancer, I have been on both sides of the random acts of kindness. I have always enjoyed helping people, and never really expected to be the one who needed help. But now that I have been on the receiving end, I see what a difference one person can really make. The small gestures, a kind note or flowers left at my door, can truly turn a bad day into a good one. I strongly encourage everyone to practice being kind every day. It can be as easy as a smile.
Just a short update now of the Cancer situation and where I am at. I saw the Radiation Oncologist and he ordered a Pet scan to see if the Cancer has spread to other areas. And finally, great news! While the tumor has grown, which we already knew, the Cancer is still confined to my chest area. The doctor feels that surgery might be the best option now. It turns out that you can only have radiation twice in your entire life, so if we use the radiation now to shrink the tumor we can never use it again. However, if surgery is an option now, then we can save the radiation for later. The surgery is super scary, but I’m not going to think about that today- today is my silver linings day! I have an appointment with a thoracic surgeon at the University of Chicago this coming Friday. First I will have a pulmonary function test to see if my lungs can handle the surgery, and then I meet with the surgeon. As scary as it is, and as daunting as the recovery is, I still want it. It’s my best chance at a longer survival. So I am truly hoping that the surgeon says Yes to taking the darn peach out of my chest. And then I can spend the summer on a chaise lounge, sipping lemonade and reading books in my garden while I recover. Sounds like a plan to me! Until next time, Sue
Happy Palm Sunday! It is a beautiful day outside and it makes me feel happy, so I thought now might be a good time to focus on the silver linings in my life. Believe it or not, there are some. The weight of the Cancer can be overwhelming, and often I get stuck in the quagmire of it all. But today, following an uplifting message from Pastor Chris at the Wayside Chapel, I am making a conscious effort to focus on some of the many good things in my life.
Let’s start with this exciting news- I am going to be a Grandma! I am over the moon. My daughter Kaitlin and her husband Jeremy are expecting a baby boy, Jack, in September. This fills me with such happiness and hope. I have been dreaming of this day for a long time. It was one of those things I was afraid I might miss out on, but Cancer did not win this time. Baby Jack wins! It is so nice to have something to look forward to- finally some good news for my family.
Two weeks ago, the week of the bad peach news, my daughter Kara decided that what we needed was a spontaneous trip to take our minds off of the Cancer for awhile. So we grabbed my friend Noreen, who always makes me laugh, and the three of us headed to the Smoky Mountains for a long weekend. It was perfect. The weather was great and the cabin we stayed in was beautiful and had an amazing view of the mountains. It was so relaxing and it renewed my spirit in a way only God’s nature can. It’s amazing how when your kids get older they sometimes know what you need more then you yourself even know.
I’ve also been thinking about the wonderful support I get from so many friends. I went to counseling this week (finally found someone I connect with to talk about this crazy Cancer life) and I was asked if I had a good support system. And hands down, the answer is a resounding yes. What has truly inspired me during this Cancer nightmare are the people who I don’t really know all that well, the people who are more “acquaintances” than friends really, who have done such amazing acts of kindness. You expect your close friends to be by your side, but what you don’t expect are other people stepping up to help you out, in big ways and small. From picking up groceries to sitting with you at chemo, the kindness shown to me has filled my heart with hope. So many times I feel this disease is isolating and solitary, and then someone comes along and joins you- they meet you where you are at- and I feel so blessed. We don’t always get to know that something we have done has made a difference in someone’s life, but I know now that even the littlest things can have a profound effect. Now, because of this Cancer, I have been on both sides of the random acts of kindness. I have always enjoyed helping people, and never really expected to be the one who needed help. But now that I have been on the receiving end, I see what a difference one person can really make. The small gestures, a kind note or flowers left at my door, can truly turn a bad day into a good one. I strongly encourage everyone to practice being kind every day. It can be as easy as a smile.
Just a short update now of the Cancer situation and where I am at. I saw the Radiation Oncologist and he ordered a Pet scan to see if the Cancer has spread to other areas. And finally, great news! While the tumor has grown, which we already knew, the Cancer is still confined to my chest area. The doctor feels that surgery might be the best option now. It turns out that you can only have radiation twice in your entire life, so if we use the radiation now to shrink the tumor we can never use it again. However, if surgery is an option now, then we can save the radiation for later. The surgery is super scary, but I’m not going to think about that today- today is my silver linings day! I have an appointment with a thoracic surgeon at the University of Chicago this coming Friday. First I will have a pulmonary function test to see if my lungs can handle the surgery, and then I meet with the surgeon. As scary as it is, and as daunting as the recovery is, I still want it. It’s my best chance at a longer survival. So I am truly hoping that the surgeon says Yes to taking the darn peach out of my chest. And then I can spend the summer on a chaise lounge, sipping lemonade and reading books in my garden while I recover. Sounds like a plan to me! Until next time, Sue
March 27, 2017
Hello Friends. Let me just put it out there right away- the scan showed progression. Or, as us Cancer patients call it, the P word. The tumor in my lung has grown quite large, the size of a small peach now. I know this because in trying to google the size of my tumor the only website that worked was the one that told pregnant women how big your baby was in comparison to fruit. Given the dimensions of my tumor it is either a large plum or a small peach. Small sounds better, so I went with that. Not only did the tumor grow, but there are more surrounding lymph nodes involved now too. My oncologist called me around dinner time the same day as the scan. When it came up on caller ID I stupidly thought, Oh, how nice he is calling me today so I can stop being nervous! Ha! I should have known better. I had a pen and paper with me and even though he talked a lot, the only words I ended up writing down were tumor and radiation. He explained that we (as if he is going through this too) needed to stop chemo for now and focus on shrinking the size of this fast growing tumor. He said radiation is my best option. I asked about chemo and radiation at the same time, but he didn’t feel that was the best option. Radiation is every day (except weekends), usually for six weeks. I have my appointment with the radiation oncologist this Wednesday.
I hung up the phone and cried. I mean, who wouldn’t? And since that news I’ve hardly slept. I lay awake in bed thinking about dying. I’m scared. Very scared. Practically panic attack in the middle of the night scared. It’s brutal. Since my diagnosis last May I have gone through three types of chemo and nothing has worked. I’m losing my faith in medicine. There is only so much they can do. This Cancer stuff is so hit or miss. What works for one person may not work for another. And that’s where I am it. In Cancer limbo. Which kind of reminds me of my days as a Catholic praying for all those poor souls in purgatory. I remember the priest telling us that there were a lot of souls in purgatory and that it was like being in limbo. The only way those souls will ever make it to Heaven is when enough people have prayed for them. Of course I believed it. And when my Grampa died when I was 10, I prayed every night for him in case he was “stuck” in purgatory. Well, I feel like I am in Cancer purgatory. I’m stuck with this stupid tumor and nothing is working.
I’m still discussing the Miracle option with God. It tends to be a one-sided conversation, but I know He is listening. All I can do is pray for my miracle. I have to trust that God knows what is best for me, and He has a plan for me, and it’s just too big for me to comprehend. But, that is not as easy as you think. I remember praying for people I knew who had Cancer or other medical issues. I would pray for them each night by name, that way there would be no confusion who I was praying for. I thought singling out who I prayed for worked better. I doubt that is true. God’s not keeping a scoreboard to see how many people are praying for me. But that doesn’t mean I have stopped praying, and I sincerely hope all of you will include me in your prayers. The thought of people praying for me gives me hope, at a time when I’m feeling a little short of hope.
So friends, I leave you with some suggestions for how to deal with your friend or family member who has terminal Cancer. Do not use the word “journey”. Journey implies a fun vacation. So unless you are sending me on a cruise, please stop referring to my Cancer struggle as a “journey”. It’s not a journey. It’s a real life and death struggle that scares the shit out of me, so I can confidently say it is anything but a “journey”. Also, if possible, please stop telling me “you can beat this”. As if I have any control over it. It’s not like a baseball game where if the team practices a lot they will get better and win the game. Only God, or hopefully modern medicine, can cure me. The best thing you can do for your Cancer friend is to listen if they want to talk, and maybe do a random act of kindness when you can. Lots of people ask how they can help, but I don’t always even know how they can. The Cancer struggle is very solitary, and scary. Just be there if they call. Don’t give up on them. Just because they said No to lunch today doesn’t mean they will say No next time. It’s a day to day struggle, and they need you, even if they don’t know it. Until next time, Sue
Hello Friends. Let me just put it out there right away- the scan showed progression. Or, as us Cancer patients call it, the P word. The tumor in my lung has grown quite large, the size of a small peach now. I know this because in trying to google the size of my tumor the only website that worked was the one that told pregnant women how big your baby was in comparison to fruit. Given the dimensions of my tumor it is either a large plum or a small peach. Small sounds better, so I went with that. Not only did the tumor grow, but there are more surrounding lymph nodes involved now too. My oncologist called me around dinner time the same day as the scan. When it came up on caller ID I stupidly thought, Oh, how nice he is calling me today so I can stop being nervous! Ha! I should have known better. I had a pen and paper with me and even though he talked a lot, the only words I ended up writing down were tumor and radiation. He explained that we (as if he is going through this too) needed to stop chemo for now and focus on shrinking the size of this fast growing tumor. He said radiation is my best option. I asked about chemo and radiation at the same time, but he didn’t feel that was the best option. Radiation is every day (except weekends), usually for six weeks. I have my appointment with the radiation oncologist this Wednesday.
I hung up the phone and cried. I mean, who wouldn’t? And since that news I’ve hardly slept. I lay awake in bed thinking about dying. I’m scared. Very scared. Practically panic attack in the middle of the night scared. It’s brutal. Since my diagnosis last May I have gone through three types of chemo and nothing has worked. I’m losing my faith in medicine. There is only so much they can do. This Cancer stuff is so hit or miss. What works for one person may not work for another. And that’s where I am it. In Cancer limbo. Which kind of reminds me of my days as a Catholic praying for all those poor souls in purgatory. I remember the priest telling us that there were a lot of souls in purgatory and that it was like being in limbo. The only way those souls will ever make it to Heaven is when enough people have prayed for them. Of course I believed it. And when my Grampa died when I was 10, I prayed every night for him in case he was “stuck” in purgatory. Well, I feel like I am in Cancer purgatory. I’m stuck with this stupid tumor and nothing is working.
I’m still discussing the Miracle option with God. It tends to be a one-sided conversation, but I know He is listening. All I can do is pray for my miracle. I have to trust that God knows what is best for me, and He has a plan for me, and it’s just too big for me to comprehend. But, that is not as easy as you think. I remember praying for people I knew who had Cancer or other medical issues. I would pray for them each night by name, that way there would be no confusion who I was praying for. I thought singling out who I prayed for worked better. I doubt that is true. God’s not keeping a scoreboard to see how many people are praying for me. But that doesn’t mean I have stopped praying, and I sincerely hope all of you will include me in your prayers. The thought of people praying for me gives me hope, at a time when I’m feeling a little short of hope.
So friends, I leave you with some suggestions for how to deal with your friend or family member who has terminal Cancer. Do not use the word “journey”. Journey implies a fun vacation. So unless you are sending me on a cruise, please stop referring to my Cancer struggle as a “journey”. It’s not a journey. It’s a real life and death struggle that scares the shit out of me, so I can confidently say it is anything but a “journey”. Also, if possible, please stop telling me “you can beat this”. As if I have any control over it. It’s not like a baseball game where if the team practices a lot they will get better and win the game. Only God, or hopefully modern medicine, can cure me. The best thing you can do for your Cancer friend is to listen if they want to talk, and maybe do a random act of kindness when you can. Lots of people ask how they can help, but I don’t always even know how they can. The Cancer struggle is very solitary, and scary. Just be there if they call. Don’t give up on them. Just because they said No to lunch today doesn’t mean they will say No next time. It’s a day to day struggle, and they need you, even if they don’t know it. Until next time, Sue
March 13, 2017
Not much news to share about Cancerland right now. My next scan will be March 20th, that’s when I will find out if the current treatment is working. If it’s working, then we just continue on this medicine until it stops working, Of course I hope and pray it’s working, but I will say i don’t like Halaven. It makes me feel sick and weak and so tired. It just takes so much out of me. I rarely have the energy to leave the house. I’ve given up making plans, everything is day to day. Yesterday I felt pretty good, even went grocery shopping on my own. And then today came. I hardly slept last night, which is usually the case the first few days after chemo. My body feels weak and shaky and restless. But I just can’t sleep. The doctor gave me a prescription for something to help, but it didn’t really help at all. And I am tired of taking more and more medications.
As a matter of fact, I made a huge decision recently. I took myself off of the morphine. True, I have pain. But morphine just seemed like such an overkill response. If I start taking morphine now, in what I hope is the early stage of this disease, where does that leave me down the line, when the pain is worse? Certainly my body will get use to the morphine and then I will just need to keep increasing the dose. My son Ryan said the other day that it won't be the Cancer that kills me, it will be my liver shutting down from the amount of medicines I am taking. That comment really made me pause and think about what I am doing, and what the long term effect will be. I’ve only been on morphine for 2 months, and coming off of it was pretty unpleasant. And that was only after 2 months. I told my doctor and while he understands my decision he said that I shouldn’t allow myself to suffer now because I am worried about what long term damage I am causing my liver. Which made me think, hmmmm, my doctor doesn’t think there will be long term liver damage because I won’t be here long term. See how the mind of a terminal Cancer person works?? It’s crazy.
All these depressing thoughts have led me to another change. I’ve started asking God to let me be one of the miracles. I mean, why not? Why not me? It has to be someone, someone is in the small percent that make it, why not me? I previously have avoided this conversation with God, because I felt the God wants me to be brave and suck it up and take what I’m given. I don’t know exactly why I think my God wants me to be a badass, but it’s just how I have felt. But lately, since I’ve been feeling so bad, the depression of this disease has set in and I started to think about asking for the miracle. What’s the worse that can happen? He says no,
I have felt for the longest time like God has thrown me into the deep end, and He is watching me try to swim my way to safety. But I’m so tired and all I can do is doggie paddle, and that gets me absolutely nowhere. It keeps me afloat, I haven’t drown, but I’m certainly not getting to the safety of the shore. But then one day I realized that this is bigger than me, God is the one keeping me afloat. He is the one that makes sure I don’t drown. And then, the other day, while I was talking late at night to God, a thought came to me. I remember reading somewhere that God doesn’t throw us into the deep end to drown us. He does it to cleanse us. Maybe that is what is happening here. Maybe God is cleansing me and preparing me for a greater future. Psalm 51:10- Create in me a clean heart, O God, and renew a right spirit within me. All I can do is hope that the future He is preparing me for is here on earth. Until next time, Sue
Not much news to share about Cancerland right now. My next scan will be March 20th, that’s when I will find out if the current treatment is working. If it’s working, then we just continue on this medicine until it stops working, Of course I hope and pray it’s working, but I will say i don’t like Halaven. It makes me feel sick and weak and so tired. It just takes so much out of me. I rarely have the energy to leave the house. I’ve given up making plans, everything is day to day. Yesterday I felt pretty good, even went grocery shopping on my own. And then today came. I hardly slept last night, which is usually the case the first few days after chemo. My body feels weak and shaky and restless. But I just can’t sleep. The doctor gave me a prescription for something to help, but it didn’t really help at all. And I am tired of taking more and more medications.
As a matter of fact, I made a huge decision recently. I took myself off of the morphine. True, I have pain. But morphine just seemed like such an overkill response. If I start taking morphine now, in what I hope is the early stage of this disease, where does that leave me down the line, when the pain is worse? Certainly my body will get use to the morphine and then I will just need to keep increasing the dose. My son Ryan said the other day that it won't be the Cancer that kills me, it will be my liver shutting down from the amount of medicines I am taking. That comment really made me pause and think about what I am doing, and what the long term effect will be. I’ve only been on morphine for 2 months, and coming off of it was pretty unpleasant. And that was only after 2 months. I told my doctor and while he understands my decision he said that I shouldn’t allow myself to suffer now because I am worried about what long term damage I am causing my liver. Which made me think, hmmmm, my doctor doesn’t think there will be long term liver damage because I won’t be here long term. See how the mind of a terminal Cancer person works?? It’s crazy.
All these depressing thoughts have led me to another change. I’ve started asking God to let me be one of the miracles. I mean, why not? Why not me? It has to be someone, someone is in the small percent that make it, why not me? I previously have avoided this conversation with God, because I felt the God wants me to be brave and suck it up and take what I’m given. I don’t know exactly why I think my God wants me to be a badass, but it’s just how I have felt. But lately, since I’ve been feeling so bad, the depression of this disease has set in and I started to think about asking for the miracle. What’s the worse that can happen? He says no,
I have felt for the longest time like God has thrown me into the deep end, and He is watching me try to swim my way to safety. But I’m so tired and all I can do is doggie paddle, and that gets me absolutely nowhere. It keeps me afloat, I haven’t drown, but I’m certainly not getting to the safety of the shore. But then one day I realized that this is bigger than me, God is the one keeping me afloat. He is the one that makes sure I don’t drown. And then, the other day, while I was talking late at night to God, a thought came to me. I remember reading somewhere that God doesn’t throw us into the deep end to drown us. He does it to cleanse us. Maybe that is what is happening here. Maybe God is cleansing me and preparing me for a greater future. Psalm 51:10- Create in me a clean heart, O God, and renew a right spirit within me. All I can do is hope that the future He is preparing me for is here on earth. Until next time, Sue
February 19, 2017
Hello friends! I know it has been a very long time between blogs, but sometimes you just need time to process and regroup. Time to figure out a new plan, or at the least, a new state of mind. My state of mind had slipped dangerously low a few times over the past month. I’ve been really struggling with the new chemo. The fatigue caused by the Halaven has been a bit overwhelming for me. I take a nap every day now, but the hard part about that is that when I wake up I don’t feel rested and refreshed. I feel like I could probably lay down for a bit longer. Ugh. Then I have to decide whether to push myself to get out of bed and try to do something, anything, that might energize me, or do I just give in to what my body wants, more sleep? One thing I have learned in the past month is that there is a big difference between “tired” and “fatigue”. If you are tired, a nap helps. If you are experiencing fatigue, nothing helps. The dictionary defines tired as “weary or bored”. Fatigue, on the other hand, is defined as a “slow ordeal”. I think of my Cancer as a slow ordeal.
As many of you know, I spent 5 days in the hospital earlier this month because I was unable to stay hydrated (isn’t that a nice way to say I couldn’t stop throwing up?) But before they admitted me, I was made to suffer the slow ordeal of the Emergency Room. We all know how that can be. I was in the ER for 10 hours. That’s not to say it wasn’t without it’s entertaining moments. The “rooms” in the Little Company of Mary ER don’t have regular walls that separate them. It’s more like one of those folding walls. Therefore, you can hear a lot of what is going on with your neighbors. And boy did we hear a lot! Including the many phone calls our neighbor was making to try and find someone to bring him some clothes because he was found passed out drunk and naked the night before. By midday a friend dropped off some hamburgers for him, but by the time we left the ER he still had no luck getting clothes.
All kidding aside, the ER visit left me a bit shaken. When you have a disease that is never going away, you look at things a bit differently. The last time I had Cancer I would look at a very rough time as something temporary, something that I just had to get through and then it would be over. But when you are Stage 4, that’s not the case. So when I’m sitting in the ER feeling horrible, I think about the future and wonder if I have a lot of ER visits yet to come. Is this how my life is going to play out? Or will we eventually find a balance of the right amount of chemo that it works on the tumors but doesn’t make me sick?
The hardest moment of the hospital stay was when one of the nurses was taking all my information and she got to the question about having a living will and a power of attorney for health care. I answered Yes to both questions. To which she then asked, in her super quiet, compassionate voice, “And do you still want to be a full code? Or are you a DNR now?” My heart sank. Did she really just ask me that? Do I really look that sick already? I had not even lost my hair at that point yet so I was feeling like I looked okay. I understand it’s her job to ask, but up until that point in time no one had ever asked me if I wanted to be a DNR. The way she asked, it was just so “are you ready for hospice and palliative care” ish. It really knocked me for a loop.
Once that nurse opened that Pandora’s black box, my mind slipped right down that slippery slope of depression about my eventual outcome. During my CT scan the constant humming of the machine carried my mind away and I found myself saying, for the first time since I was diagnosed, maybe it won’t be that bad to die. I get to see my mom and dad. I really miss them. It took awhile for me to snap out of that. I am a fighter, and I am not giving up. Miracles happen every day, and maybe I will get one. Someone has to be the small percentage that live, maybe it will be me. Who knows?
By the end of my hospital stay we still had no clear answer of what made me so sick. The infectious disease doctors said it was side effects of the chemo. The oncology team said it was a flu virus. We will know for sure after I get my next round of chemo tomorrow. I’m feeling nervous about it because if I did end up in the hospital because of chemo side effects, then that means I will be super sick again this week. But for now, I am trying to remain positive and will hope it was just a flu.
Unfortunately I had to cancel the Disney trip. I was not well enough to travel. That was pretty disappointing for all of us, but the kids came over every day of my birthday weekend and we spent some great quality time together. As soon as I have a better idea of how this chemo will effect me, I will book the Disney trip. I am not giving up on that family trip! I am so blessed to have great friends who care about me so much. My friends Erika and Jim, along with their kids Anna and Caroline, stopped by after the hospital ordeal and brought Disney to me, since I couldn’t go to Disney. They filled a Mickey and Minnie tote with lots of fun Disney things to cheer me up. My friend Mardelle, who shares my love/obsession for Disney’s Pineapple Whip, sent me a pineapple whip candle. Smells heavenly! I truly appreciate those of you who reach out and send me little notes of encouragement. I sure need them!
In other news, I am just finishing up my second cycle on the new chemo and I have lost all my hair now. I wasn’t surprised, I tend to be in the small percent that things happen to. The chemo nurses had said that only a few people lose their hair, it hardly happens at all. And yet, just two weeks in, I lost it all. My doctor, who is partially bald, said “Well at least yours will grow back!” Love his sense of humor.
A final thought for today; when you see me (or any Cancer patient) bald from chemo treatments, please stop yourself from saying things like “Oh! Well it’s obviously working since you lost your hair!”. No! No! No! That is not true in the way you think it is. Yes, the chemo drug is working on killing the fast growing hair cells, but that does NOT mean they are killing the cancer cells. We just don’t know. When I have my three month scan we will find out if this chemo is working. As always, Cancer is the master at the waiting game. Until next time, Sue
Hello friends! I know it has been a very long time between blogs, but sometimes you just need time to process and regroup. Time to figure out a new plan, or at the least, a new state of mind. My state of mind had slipped dangerously low a few times over the past month. I’ve been really struggling with the new chemo. The fatigue caused by the Halaven has been a bit overwhelming for me. I take a nap every day now, but the hard part about that is that when I wake up I don’t feel rested and refreshed. I feel like I could probably lay down for a bit longer. Ugh. Then I have to decide whether to push myself to get out of bed and try to do something, anything, that might energize me, or do I just give in to what my body wants, more sleep? One thing I have learned in the past month is that there is a big difference between “tired” and “fatigue”. If you are tired, a nap helps. If you are experiencing fatigue, nothing helps. The dictionary defines tired as “weary or bored”. Fatigue, on the other hand, is defined as a “slow ordeal”. I think of my Cancer as a slow ordeal.
As many of you know, I spent 5 days in the hospital earlier this month because I was unable to stay hydrated (isn’t that a nice way to say I couldn’t stop throwing up?) But before they admitted me, I was made to suffer the slow ordeal of the Emergency Room. We all know how that can be. I was in the ER for 10 hours. That’s not to say it wasn’t without it’s entertaining moments. The “rooms” in the Little Company of Mary ER don’t have regular walls that separate them. It’s more like one of those folding walls. Therefore, you can hear a lot of what is going on with your neighbors. And boy did we hear a lot! Including the many phone calls our neighbor was making to try and find someone to bring him some clothes because he was found passed out drunk and naked the night before. By midday a friend dropped off some hamburgers for him, but by the time we left the ER he still had no luck getting clothes.
All kidding aside, the ER visit left me a bit shaken. When you have a disease that is never going away, you look at things a bit differently. The last time I had Cancer I would look at a very rough time as something temporary, something that I just had to get through and then it would be over. But when you are Stage 4, that’s not the case. So when I’m sitting in the ER feeling horrible, I think about the future and wonder if I have a lot of ER visits yet to come. Is this how my life is going to play out? Or will we eventually find a balance of the right amount of chemo that it works on the tumors but doesn’t make me sick?
The hardest moment of the hospital stay was when one of the nurses was taking all my information and she got to the question about having a living will and a power of attorney for health care. I answered Yes to both questions. To which she then asked, in her super quiet, compassionate voice, “And do you still want to be a full code? Or are you a DNR now?” My heart sank. Did she really just ask me that? Do I really look that sick already? I had not even lost my hair at that point yet so I was feeling like I looked okay. I understand it’s her job to ask, but up until that point in time no one had ever asked me if I wanted to be a DNR. The way she asked, it was just so “are you ready for hospice and palliative care” ish. It really knocked me for a loop.
Once that nurse opened that Pandora’s black box, my mind slipped right down that slippery slope of depression about my eventual outcome. During my CT scan the constant humming of the machine carried my mind away and I found myself saying, for the first time since I was diagnosed, maybe it won’t be that bad to die. I get to see my mom and dad. I really miss them. It took awhile for me to snap out of that. I am a fighter, and I am not giving up. Miracles happen every day, and maybe I will get one. Someone has to be the small percentage that live, maybe it will be me. Who knows?
By the end of my hospital stay we still had no clear answer of what made me so sick. The infectious disease doctors said it was side effects of the chemo. The oncology team said it was a flu virus. We will know for sure after I get my next round of chemo tomorrow. I’m feeling nervous about it because if I did end up in the hospital because of chemo side effects, then that means I will be super sick again this week. But for now, I am trying to remain positive and will hope it was just a flu.
Unfortunately I had to cancel the Disney trip. I was not well enough to travel. That was pretty disappointing for all of us, but the kids came over every day of my birthday weekend and we spent some great quality time together. As soon as I have a better idea of how this chemo will effect me, I will book the Disney trip. I am not giving up on that family trip! I am so blessed to have great friends who care about me so much. My friends Erika and Jim, along with their kids Anna and Caroline, stopped by after the hospital ordeal and brought Disney to me, since I couldn’t go to Disney. They filled a Mickey and Minnie tote with lots of fun Disney things to cheer me up. My friend Mardelle, who shares my love/obsession for Disney’s Pineapple Whip, sent me a pineapple whip candle. Smells heavenly! I truly appreciate those of you who reach out and send me little notes of encouragement. I sure need them!
In other news, I am just finishing up my second cycle on the new chemo and I have lost all my hair now. I wasn’t surprised, I tend to be in the small percent that things happen to. The chemo nurses had said that only a few people lose their hair, it hardly happens at all. And yet, just two weeks in, I lost it all. My doctor, who is partially bald, said “Well at least yours will grow back!” Love his sense of humor.
A final thought for today; when you see me (or any Cancer patient) bald from chemo treatments, please stop yourself from saying things like “Oh! Well it’s obviously working since you lost your hair!”. No! No! No! That is not true in the way you think it is. Yes, the chemo drug is working on killing the fast growing hair cells, but that does NOT mean they are killing the cancer cells. We just don’t know. When I have my three month scan we will find out if this chemo is working. As always, Cancer is the master at the waiting game. Until next time, Sue
January 15, 2017
January 2, 2017 Welcome to a new year, a year of hope and …. That was going to be the start of my next blog entry, but I got interrupted and didn’t get back to my blog because, well, because shit happens. The biopsy that I had done December 29 did not lead us down a primrose path of happiness. Where to begin?
Biopsy Day- Ryan won and got to be the lucky kid to go with me. It’s not exactly how I would choose to spend quality time my kids, but you take what you can get. The University of Chicago Hospital is a beautiful place to be. It feels more like an first class hotel then a hospital. Until you are taken back to your room to wait for your surgery, then it feels like a first class hospital, with all the nervousness and raw panic still inside you. When it gets really close to your turn, you are separated from your family; you heading to the operating room, and your family heading to a waiting area on another floor, with a restaurant type pager in hand.
I am struggling with what to share right now. The idea of my blog when I started was to let people see the Cancer experience up close. That way when someone they love gets Cancer, they will already have some insight into the process. It has never been my intention to scare people, or to bring them down. But sometimes, there just isn’t any way to put a positive spin on the Cancer experience. And so, buckle up, it’s time for a bumpy ride.
The first dreadful thing that happened the day of the biopsy was that the nurse did not start the IV properly. I knew from the moment of the sharp stab that something was not right. By now, I’ve had enough needle sticks to know a good one from a bad one, and this one was very bad. In fact, she stuck the needle right through my vein. The medicines she administered from that point on did not go into my bloodstream, but rather into a small area surrounding the insertion. In other words, the medicine they gave me through the IV never worked. When another nurse (due to shift change) removed the IV 6 hours later, a huge lump immediately formed and bright red blood began to quickly soak the gauze. The nurse did a great job treating the hematoma by doing compressions. She told me she had heard of this happening but had never seen it. She went on to say that the reason my body never got the drugs from the IV was because of the way the previous nurse had inserted the needle. So frustrating.
I didn’t mind having the huge dark bruised bump for the next two weeks, but I did mind that I had experienced so much pain during the biopsy. Backing up to the biopsy. It is in the top three of the most painful things I have gone through with Cancer. To make a very long story short: In the procedure room I kept asking everyone when I would be getting the medications to relax, to be put in what they call a “twilight” state. The nurse and two doctors claimed they already had given me the required amount. I asked for more. They gave me one extra dose and began the procedure. Remember how the IV was not inserted right? Yep, you guessed it. The drugs never made it through my system properly. Therefore, I was fully alert and feeling pain during the procedure. They did administer a local anesthetic that worked, but only until they got in deeper. Then I felt the stabbing of the needle/probe clipping a piece of skin from inside my lung. I screamed. No lie, screamed. I started to cry so hard that they kept asking me to stay still. I begged them to stop. I kept saying something was not right, I shouldn't have this much pain. The nurse and doctors kept murmuring things like “almost done” and “you’re doing great”. Then I lost it and yelled, ‘I’m done. Stop. Do not take another sample” The resident said, “You’re almost done. Just one more.” I sobbed and sobbed and was shaking and said “NO. Stop now.” Any guess what happened? They took another sample- another severe stab to my lung. And then, with no words at all, the two doctors left the room and the nurse started to take me to my room.
On the way back I was still sobbing in pain and asked for a painkiller NOW. She said she would have to ask the doctor. After she left me in my cubicle she came back and said that the doctor said it was ok to give me ---wait for it---2 Tylenol! I was less than kind in my response. I pointed out that I currently am on extended release Morphine so that there is Morphine in my system 24 hours a day. And that I take a high dosage of Vicodin for breakthrough pain. I said to call my doctor to get better meds. The nurse came back in about 15 minutes with some morphine….which she injected into the failed IV. The pain did not get better. By now, however, I am a professional patient, and had brought my own pain meds with. I took my meds and finally was allowed to go home. All in all, a horrific experience.
Day two of recovery things were not going well, but I expected a few days of recovery, so I didn’t complain. Besides, I was home with control of my pain meds, so all was well. Only it wasn’t. The chest pain just got worse and worse. 5 days later I was running a fever and still coughing up blood clots. Finally, I couldn’t take the pain anymore and had Kara take me to the Care Station. The male nurse at the front desk was very rude, he wanted me to go back to the hospital where my surgery was done to be treated there. I explained I was in too much pain to make a trip in the city to the University of Chicago. He reluctantly checked me in. Everyone else that night was very kind and compassionate. The doctor stated several times how sorry he was that I had to go through this. He said that he sees a lot of “pretend patients” who come and complain over the littlest things, and then there I was with this horrible disease and I was not complaining at all. He made me feel brave. I liked that.
They took an x-ray and determined I had pneumonia. He sent me home with 4 prescriptions. I didn’t get any better over the next five days and was in a lot of pain.Then I went to see my oncologist. He took one look at the x-ray and said; “You don’t have pneumonia. Your lung is irritated and inflamed, probably from the procedure. Judging by your symptoms, I would say you have a bad case of Influenza.” He sent me home and said to call if I got worse, otherwise as long as the fever and cough were gone in a week we could start chemo next week. Sigh.
So here I am, on Sunday, almost recovered and ready to start the new chemo tomorrow. Both Kaitlin and Kara are going with. It will take place in the Cancer Center at Little Company of Mary Hospital. The nurse said to expect the first time to take about two hours. I’ve been told that the side effects with this new drug, Halaven, are usually flu like symptoms for the first two days, drops in both my WBC and RBC, and possibly hair loss and fatigue. Oh the joys of the unknown! I will have the chemo once a week for two weeks and then I am off the third week. I will stay on this chemo for three months and then get the ever popular scan to see if it works.
In the meantime, I am trying to LIVE my life, not just merely be alive. On that note, I decided to treat myself and my kids to a vacation to Disney World for my birthday in February. I want to do things now, while I still feel good. I know all to well that things can change suddenly and without warning. I want to make the most of my time, and I keep praying that God will give me a miracle. I would rather spend my money on making memories then leaving it behind for the kids. We all agreed that we should do things as a family as much as possible. Make as many memories as we can. Please continue your prayers in hopes that my body will accept this new chemo and allow me to thrive.
Until next time, Sue
January 2, 2017 Welcome to a new year, a year of hope and …. That was going to be the start of my next blog entry, but I got interrupted and didn’t get back to my blog because, well, because shit happens. The biopsy that I had done December 29 did not lead us down a primrose path of happiness. Where to begin?
Biopsy Day- Ryan won and got to be the lucky kid to go with me. It’s not exactly how I would choose to spend quality time my kids, but you take what you can get. The University of Chicago Hospital is a beautiful place to be. It feels more like an first class hotel then a hospital. Until you are taken back to your room to wait for your surgery, then it feels like a first class hospital, with all the nervousness and raw panic still inside you. When it gets really close to your turn, you are separated from your family; you heading to the operating room, and your family heading to a waiting area on another floor, with a restaurant type pager in hand.
I am struggling with what to share right now. The idea of my blog when I started was to let people see the Cancer experience up close. That way when someone they love gets Cancer, they will already have some insight into the process. It has never been my intention to scare people, or to bring them down. But sometimes, there just isn’t any way to put a positive spin on the Cancer experience. And so, buckle up, it’s time for a bumpy ride.
The first dreadful thing that happened the day of the biopsy was that the nurse did not start the IV properly. I knew from the moment of the sharp stab that something was not right. By now, I’ve had enough needle sticks to know a good one from a bad one, and this one was very bad. In fact, she stuck the needle right through my vein. The medicines she administered from that point on did not go into my bloodstream, but rather into a small area surrounding the insertion. In other words, the medicine they gave me through the IV never worked. When another nurse (due to shift change) removed the IV 6 hours later, a huge lump immediately formed and bright red blood began to quickly soak the gauze. The nurse did a great job treating the hematoma by doing compressions. She told me she had heard of this happening but had never seen it. She went on to say that the reason my body never got the drugs from the IV was because of the way the previous nurse had inserted the needle. So frustrating.
I didn’t mind having the huge dark bruised bump for the next two weeks, but I did mind that I had experienced so much pain during the biopsy. Backing up to the biopsy. It is in the top three of the most painful things I have gone through with Cancer. To make a very long story short: In the procedure room I kept asking everyone when I would be getting the medications to relax, to be put in what they call a “twilight” state. The nurse and two doctors claimed they already had given me the required amount. I asked for more. They gave me one extra dose and began the procedure. Remember how the IV was not inserted right? Yep, you guessed it. The drugs never made it through my system properly. Therefore, I was fully alert and feeling pain during the procedure. They did administer a local anesthetic that worked, but only until they got in deeper. Then I felt the stabbing of the needle/probe clipping a piece of skin from inside my lung. I screamed. No lie, screamed. I started to cry so hard that they kept asking me to stay still. I begged them to stop. I kept saying something was not right, I shouldn't have this much pain. The nurse and doctors kept murmuring things like “almost done” and “you’re doing great”. Then I lost it and yelled, ‘I’m done. Stop. Do not take another sample” The resident said, “You’re almost done. Just one more.” I sobbed and sobbed and was shaking and said “NO. Stop now.” Any guess what happened? They took another sample- another severe stab to my lung. And then, with no words at all, the two doctors left the room and the nurse started to take me to my room.
On the way back I was still sobbing in pain and asked for a painkiller NOW. She said she would have to ask the doctor. After she left me in my cubicle she came back and said that the doctor said it was ok to give me ---wait for it---2 Tylenol! I was less than kind in my response. I pointed out that I currently am on extended release Morphine so that there is Morphine in my system 24 hours a day. And that I take a high dosage of Vicodin for breakthrough pain. I said to call my doctor to get better meds. The nurse came back in about 15 minutes with some morphine….which she injected into the failed IV. The pain did not get better. By now, however, I am a professional patient, and had brought my own pain meds with. I took my meds and finally was allowed to go home. All in all, a horrific experience.
Day two of recovery things were not going well, but I expected a few days of recovery, so I didn’t complain. Besides, I was home with control of my pain meds, so all was well. Only it wasn’t. The chest pain just got worse and worse. 5 days later I was running a fever and still coughing up blood clots. Finally, I couldn’t take the pain anymore and had Kara take me to the Care Station. The male nurse at the front desk was very rude, he wanted me to go back to the hospital where my surgery was done to be treated there. I explained I was in too much pain to make a trip in the city to the University of Chicago. He reluctantly checked me in. Everyone else that night was very kind and compassionate. The doctor stated several times how sorry he was that I had to go through this. He said that he sees a lot of “pretend patients” who come and complain over the littlest things, and then there I was with this horrible disease and I was not complaining at all. He made me feel brave. I liked that.
They took an x-ray and determined I had pneumonia. He sent me home with 4 prescriptions. I didn’t get any better over the next five days and was in a lot of pain.Then I went to see my oncologist. He took one look at the x-ray and said; “You don’t have pneumonia. Your lung is irritated and inflamed, probably from the procedure. Judging by your symptoms, I would say you have a bad case of Influenza.” He sent me home and said to call if I got worse, otherwise as long as the fever and cough were gone in a week we could start chemo next week. Sigh.
So here I am, on Sunday, almost recovered and ready to start the new chemo tomorrow. Both Kaitlin and Kara are going with. It will take place in the Cancer Center at Little Company of Mary Hospital. The nurse said to expect the first time to take about two hours. I’ve been told that the side effects with this new drug, Halaven, are usually flu like symptoms for the first two days, drops in both my WBC and RBC, and possibly hair loss and fatigue. Oh the joys of the unknown! I will have the chemo once a week for two weeks and then I am off the third week. I will stay on this chemo for three months and then get the ever popular scan to see if it works.
In the meantime, I am trying to LIVE my life, not just merely be alive. On that note, I decided to treat myself and my kids to a vacation to Disney World for my birthday in February. I want to do things now, while I still feel good. I know all to well that things can change suddenly and without warning. I want to make the most of my time, and I keep praying that God will give me a miracle. I would rather spend my money on making memories then leaving it behind for the kids. We all agreed that we should do things as a family as much as possible. Make as many memories as we can. Please continue your prayers in hopes that my body will accept this new chemo and allow me to thrive.
Until next time, Sue