December 22, 2016
I’ve almost caught my breath today from the Monday oncologist appointment. Things did not go as planned. Though I suppose there is no real “planning” when it comes to dealing with Cancer. Nevertheless, I was expecting an easy visit where Dr. H would explain the type of chemo I would be getting, how it would work, and so on. I brought Kara and Ryan with me, even though I wasn’t expecting anything new or important, but it’s always nice to have your kids with you (Kaitlin had work that day). Maybe somewhere deep in my heart or mind I knew there was bad news coming and that’s why I had them come Monday. Who knows?
What I do know is that I was not prepared to hear my current prognosis. As I mentioned in my last post, I did glance at one article about the new drug but as soon as I saw statistics I moved along. Most of the visit was good, with us just having a nice conversation and talking about palindromes. I know that sounds odd, but whenever I take Ryan with and he happens to come across another highly intelligent person, you just never know what direction things will go. All it took this time was for me to tell the doctor my birthday, 2-6-62, and Ryan commented, “I didn’t know your birthday was a palindrome! That will be so easy to remember!” This lead to about a 5 or 6 minute conversation between Ryan and Dr. H comparing their favorite palindromes. (Seriously? People actually have favorite palindromes?)
Onward we go. The bad news about the tumor growing and the Cancer spreading is that we will be running out of options sooner rather than later. I have so far avoided ever asking Dr.H what my long term prognosis is. I was waiting until I felt he would have enough information to give me an accurate prediction. Well friends, that day has arrived. Dr. H knows I want the truth, nothing sugar coated for me, please. So the conversation went something like this:
Me: So, would you say I could still be in the 10 year survival group knowing what we know now about the tumor growth and the Cancer spreading?
Dr. H: No, unfortunately not. I would love for you to prove me wrong someday, but with the way things are going I don’t even see you making the 5 to 10 year survival group.
Me: (Somewhat dazed) Oh, okay. Well, will you be able to tell me as we go along when I arrive at the point where I should start doing the things I’ve always wanted to do?
Dr. H: I think you need to start doing those things now, while you still feel well enough to do them and enjoy them. If you wait until your tests are at the point where I will be telling you that your time is almost up, you will feel too lousy to do any of them. You should do those things now and also get your affairs in order.
Me: Silence? I don’t know if I said anything.
We agreed that the last scan did leave us with some ongoing questions of what the tumor is actually made up of. It’s too complicated to explain when I am so tired, so the short version is this: Next week I will be getting another biopsy done on the tumor (which has now doubled in size since the start). We feel that more information will hopefully yield more options. I will keep you all posted about when it is scheduled. Hopefully, next week at University of Chicago.
In the meantime, I hope your holidays will be merry and bright, and that mine will be...memorable, for good reasons. Until next time, Sue
I’ve almost caught my breath today from the Monday oncologist appointment. Things did not go as planned. Though I suppose there is no real “planning” when it comes to dealing with Cancer. Nevertheless, I was expecting an easy visit where Dr. H would explain the type of chemo I would be getting, how it would work, and so on. I brought Kara and Ryan with me, even though I wasn’t expecting anything new or important, but it’s always nice to have your kids with you (Kaitlin had work that day). Maybe somewhere deep in my heart or mind I knew there was bad news coming and that’s why I had them come Monday. Who knows?
What I do know is that I was not prepared to hear my current prognosis. As I mentioned in my last post, I did glance at one article about the new drug but as soon as I saw statistics I moved along. Most of the visit was good, with us just having a nice conversation and talking about palindromes. I know that sounds odd, but whenever I take Ryan with and he happens to come across another highly intelligent person, you just never know what direction things will go. All it took this time was for me to tell the doctor my birthday, 2-6-62, and Ryan commented, “I didn’t know your birthday was a palindrome! That will be so easy to remember!” This lead to about a 5 or 6 minute conversation between Ryan and Dr. H comparing their favorite palindromes. (Seriously? People actually have favorite palindromes?)
Onward we go. The bad news about the tumor growing and the Cancer spreading is that we will be running out of options sooner rather than later. I have so far avoided ever asking Dr.H what my long term prognosis is. I was waiting until I felt he would have enough information to give me an accurate prediction. Well friends, that day has arrived. Dr. H knows I want the truth, nothing sugar coated for me, please. So the conversation went something like this:
Me: So, would you say I could still be in the 10 year survival group knowing what we know now about the tumor growth and the Cancer spreading?
Dr. H: No, unfortunately not. I would love for you to prove me wrong someday, but with the way things are going I don’t even see you making the 5 to 10 year survival group.
Me: (Somewhat dazed) Oh, okay. Well, will you be able to tell me as we go along when I arrive at the point where I should start doing the things I’ve always wanted to do?
Dr. H: I think you need to start doing those things now, while you still feel well enough to do them and enjoy them. If you wait until your tests are at the point where I will be telling you that your time is almost up, you will feel too lousy to do any of them. You should do those things now and also get your affairs in order.
Me: Silence? I don’t know if I said anything.
We agreed that the last scan did leave us with some ongoing questions of what the tumor is actually made up of. It’s too complicated to explain when I am so tired, so the short version is this: Next week I will be getting another biopsy done on the tumor (which has now doubled in size since the start). We feel that more information will hopefully yield more options. I will keep you all posted about when it is scheduled. Hopefully, next week at University of Chicago.
In the meantime, I hope your holidays will be merry and bright, and that mine will be...memorable, for good reasons. Until next time, Sue
December 16, 2016
Dear Friends- not the news we hoped for. The tumor has grown. The oncologist said that while it hasn’t grown at an “alarming rate”, it’s grown enough to know the current medication, Xeloda, is not working. It’s time for a new plan, already. It’s pretty depressing to talk about right now, as you can imagine. The doctor went over some options and then Monday at my appointment we will decide what to do. He is recommending a drug called Eribulin. I would get it through an IV. Each cycle would be three weeks, I would get the drug once a week for two weeks, then have the third week off. He said if I have holiday travel plans he would be comfortable postponing my first dose until after the holidays, but not much longer than that.
I’m not really sure how I feel about it all right now. I need some time to let it sink in. Of course I don’t want to start during the holidays, but then again, why wait? Since none of the drugs I have taken since being diagnosed in April have worked, I feel like I have actually done nothing. The tumor continues to grow, and the Cancer continues to spread. So the whole theory of being “lucky to find it so early” really doesn’t apply to me anymore.
I love how Dr. H “gets me”. After he told me the name of the drug he wants me to have he said, “And since I know you will research the drug before Monday, I will spell it for you. But also, I want you to know that it won’t take much reading about the drug before you wish you hadn’t started reading. It’s a tough thing.” Much to my own amazement, I waited about 14 hours before I even googled it. I read one very short article about it, and quickly realized his point. Not only is it a tough drug because of side effects, but also because the article began discussing survival statistics once you get to “this point.” And it’s not pretty. How did I get to “this point” already? The article went on to explain that while I may feel like the next drug is only my third try, it’s really not. You have to consider the drugs you took to fight the Cancer the first time as failed attempts too. And that’s true- because obviously the four drugs I took for the first time I had Cancer in 2014 all failed. They failed miserably. They held it off for 17 months, but they didn’t kill the Cancer. So now, my next step isn’t my third try at drugs, it’s my 7th. And that’s when those stupid, miserable, irritating odds start to work their way into my brain. UGH! I closed the article, put away the computer, and sat on the couch watching a Christmas movie and petting Tessie.
I have no words of wisdom tonight, friends. My mind is going in a million different directions right now. I wasn’t really ready to write a new post, but I love all of you and the support you give me is strengthening, so I wanted you to know. Keep sending those prayers and happy vibes my way. I hope and pray that your holidays will be spent loving all the people, and pets, in your life. Until next time, Sue
December 13, 2016
(First, right from the start, a brief sidebar. I never really noticed that I put the year along with the date on my entries. My sudden realization of this fact leads me to ponder the why factor. I must feel that I will still be around in a year or else I would not optimistically include the year, right? Perhaps this is my subconscious hard at work trying to convince my more active conscious that the “odds be ever in my favor”- just call me Katniss! And now back to the regularly scheduled blog.)
It’s been a crappy physical week, but a great spiritual week (both church spiritual and loving friends lifting my spirits type of spiritual.) Where to begin. Let’s get the bad stuff out of the way first. The ugly, hideous, chest pain beast has been overactive lately. I’m following my new regimen of taking the 12 hour extended release Morphine every 12 hours and taking Vicodin for any breakthrough pain. That works great, until it suddenly doesn't. And the "suddenly doesn’t" usually happens between 1 and 2 in the morning. I had a particularly bad night this past week and the pain woke me up at 1:23 a.m. I was laying in bed and began to softly cry into my pillow. I knew it was to soon to take more pain medicine, so what could I do except cry about it. (I have visions of taking a big, dark, magic marker and leaving it by my bedside so that when I wake up from the pain in the middle of the night I will graffiti up my wall with all the angry thoughts I have. So far, I have restrained myself.)
As I cried, not as softly as I thought I was crying, along comes my St. Bernard, Tessie. We rescued Tessie 12 years ago, and she is now 15. (Her doctor said he has never seen a St. Bernard live that long. Kara is convinced Tessie is immortal.) Whenever anyone cries Tessie runs to the rescue. St. Bernards are, by their very nature, rescue dogs. During my first go around with Cancer in 2014, I remember Tessie coming to snuggle with me whenever she heard me cry. And those lonely hours of lying on the bathroom floor? Yep, Tessie laid there right by me. But this night, Tessie did something astounding. As I cried and it became more intense, Tessie left my room and ran up the stairs to Kara’s room and started barking! She had never gone this far for my "rescue" before. She just kept on barking until I heard Kara’s voice asking Tessie what’s wrong. First Kara tried to convince Tessie to go lay down, but Tessie wasn’t having any of that. She just kept barking. Then Tessie started to run up and down the stairs and finally I could hear Kara say; “Ok Tessie, come on, I’ll let you out.” But as soon as they came down the stairs Tessie came right into my room, and of course Kara followed. It only took a few seconds for Kara to see what was going on, that I was crying and Tessie was trying to help. Kara laid down in the bed next to me until I fell asleep. How lucky am I to be surrounded by such love?
Another amazing act of love and kindness happened recently. For about the past 15 years my family has had the tradition of going to the Music Box Theater (www.musicboxtheatre.com) in the city to be part of the White Christmas sing-a-long. We love it. For years I’ve told my friend Thea about it, and it was always a hope of ours that we would see it on the big screen together one day. As you know, Thea and her husband Bernard came from Holland and spent two weeks with us at Thanksgiving this year. We had planned to do it next year to celebrate our 30th anniversary of becoming penpals, but Cancer has a way of making you sometimes speed up your important stuff. The White Christmas event is only for the two weeks around Christmas, so there was no chance of us seeing it this year. Or was there??? Here comes the amazing part.
I wrote a letter to the manager at the theater telling him the story of our friendship and how Cancer was trying to stop our dream. The next day he replied to my letter and asked me to call him. I was so nervous to call, I wasn’t sure what he would say. But it ended up being a dream come true. He said that The Music Box theater wanted to make our dream come true, and he offered to have a private showing for us the day after Thanksgiving. I started to cry right then and there. I’m crying again just telling the story. Someone who doesn’t even know me was making my dream come true. I asked what it would cost and he said “Nothing. We want to make this happen for you.” And so, the day after Thanksgiving at 10:00 a.m. the five of us went to our private showing and sang our hearts out and cried tears of joy. I gave thank you cards/gifts to the three workers who had to come in early to work for us (always pay it forward!) and we happily left the theater with our dream being as wonderful as I had ever hoped it would be. You rock, Music Box!
While Thea was here we checked out a new church together, the Moraine Valley Church in Palos Heights.(morainevalleychurch.org) We truly enjoyed the service and I was sure to fill out the newcomer forms. The next day the pastor called and left a message thanking us for coming and he looked forward to meeting us. The next day a postcard came from a church group telling us about the different programs the church has. Then the next day came a card from the staff that said they prayed for me and my dealing with Cancer at their staff meeting that day. (I had included the Cancer fact on one of the welcome forms,) Talk about feeling welcome!
Kara and I returned to the church after Thea and Bernard left and had another positive experience, including getting coffee at the He Brews Cafe. The sermon that day really touched my heart. The topic was about how God is more concerned with how we live then where we live or with who we live. God wants to see us being Christians to one another. I have said it before, and will continue to say it, I truly believe that each of us has the power to make someone’s dream come true. God is the one who can perform the big miracles, but He trusts us to perform the little, daily miracles. The Music Box manager could have read my letter and tossed it out without another thought. But he didn’t. He made a dream come true. I believe each of us has that power, and duty as a Christian, to make others dreams come true. So this holiday season, look around you and actively seek out a “miracle” you can perform. A dream you can make happen for someone.
I posted on my Facebook a few weeks ago that Thea does not have a working computer right now so our Skype sessions are a bit of a challenge. We can see each other, but her microphone doesn’t work, so we have to call each other on the phone while we Skype. It makes for some amusing “modern technology” jokes. I asked if anyone would have an Ipad or other tablet they no longer used and they would be willing to give to Thea. In just three hours I had two offers. Can you believe that? People who didn’t even know Thea, and yet they made her dream (and mine) come true. See? Everyday people can do everyday miracles. YOU are an everyday person. YOU can make someone’s dream come true. The reward you receive, the gift of giving, is the best gift you will get this holiday season.
Tomorrow, Wednesday, is my next scan. I have a pretty bad case of Scanxiety right now, so would appreciate some prayers sent my way. The scan itself is easy peasy, the waiting for results….not so much. Until next time, Sue aka Suzy Snowflake
December 7, 2016
It’s been another stretch of bad days, so it’s been awhile since I’ve been able to sit at my computer and type. My skin is peeling so badly now on my hands and feet that my oncologist had to adjust the dosage, again. Here is where we are at now; 7 pills a day for 7 days, then off chemo for 7 days, then back on for 7 days and so on down the line. My most recent visit with Dr. H. was on November 21, the Monday before Thanksgiving. I was happy to take Thea and her husband Bernard with to the appointment. Now when we Skype they will be able to picture the doctor better.
The first thing the doctor did was comment on how bad my hands looked. At that point they were a bright reddish purple color with multiple layers of skin missing in certain parts. I couldn’t even hold my hands in a “normal” way. I walked around with my palms and fingers up. It was painful to stretch my hands and place them down. Dr. H. asked how long my hands had been like this and why didn’t I call. I answered they had only gotten that bad a couple days ago, and I didn’t think I should call because I was trying to be brave and suck it up. Luckily, my new doctor does not believe in “sucking it up” and made immediate changes to my drug regimen. He lowered the daily to dose from 8 to 7, and gave me an extra week off so my hands and feet could heal. He said that I shouldn’t consider the change to be a setback, that it just takes some time to find the right combination that works for each individual.
I was looking forward to the next scan so that I could see if the Xeloda was working. Unfortunately, Dr. H, wanted to wait a couple of more weeks because of the scan I had while in the ER in October. The October scan, you may remember, showed growth of the tumor and spreading of the Cancer to two new spots. Because I just had the October scan, the doctor suggested waiting until December. So now my next scan is Wednesday, December 14th. Just in time for Christmas. If it’s good news, what a great present that will be! If it’s bad news, maybe it will be time for a trip somewhere warm and sunny for awhile.
I’ve really been struggling with Christmas this year. My kids will be the first to tell you that I am the Christmas Queen. I love all things Christmas and am huge on making fun family traditions and spending lots of family time together, I usually start Christmas shopping in October. But not this year. This year seems so different to me. The first time I had Cancer the treatments ended on October 31, so by Christmas we were celebrating not only the holiday, but also the fact that I was “in remission”. We were so happy, and also so naive. We never spent anytime thinking or talking about the possibility of the Cancer coming back. Heck, I was only a Stage 1, and I did all the “right” things. It wasn’t coming back. Our lives resumed and we didn’t look back.
What a different life we are leading now. There is no “remission” for my anymore. There will never be a day when a doctor will say “You’re cured!”. No one will be ringing a bell to celebrate my last day of treatment. I read a quote the other day that has really stuck with me: “It never occurred to me that one day I’d wake up sick and never get better.” It always takes something big, like Cancer, to make you stop and truly appreciate what you have. I feel the overwhelming need to make each day count now. But that’s impossible. Some days I can’t make it off the couch, so how do I make that day count? Or what about the days I spend at the hospital? Or the doctor’s office? How do I make those days “count”? I feel guilty sometimes at the end of the day when I haven’t done anything particularly memorable or special. I am suppose to make each day count! Making it to Jewel to buy dog food doesn’t really “count”, does it?
And so once again, I find that Cancer makes me readjust my way of thinking. For a day to “count” it doesn’t need to have had something stupendous happen. Getting off the couch and going to Jewel does, in fact, count. It counts because I know the effort I made to do it. I am proud of myself for making it out of the house that day. And sometimes, that has to be enough. Sometimes, most of the time actually, I need to be kinder to myself. I need to acknowledge the small things I accomplish each day. I try to do one thing each day that will make me proud of myself. God loves me just the way I am, so shouldn’t I? I thank God everyday for all the things and people in my life. And while it’s hard to say “Hey God, thanks for the Cancer”, what I do say is “Hey God, thanks for giving me people who care about me that are helping me get through this Cancer one day at a time. Thanks for making me brave. Thanks for trusting me to use my Cancer as a way to teach and help others.” Every day counts, even when it’s a bad one. Until next time, Sue
It’s been another stretch of bad days, so it’s been awhile since I’ve been able to sit at my computer and type. My skin is peeling so badly now on my hands and feet that my oncologist had to adjust the dosage, again. Here is where we are at now; 7 pills a day for 7 days, then off chemo for 7 days, then back on for 7 days and so on down the line. My most recent visit with Dr. H. was on November 21, the Monday before Thanksgiving. I was happy to take Thea and her husband Bernard with to the appointment. Now when we Skype they will be able to picture the doctor better.
The first thing the doctor did was comment on how bad my hands looked. At that point they were a bright reddish purple color with multiple layers of skin missing in certain parts. I couldn’t even hold my hands in a “normal” way. I walked around with my palms and fingers up. It was painful to stretch my hands and place them down. Dr. H. asked how long my hands had been like this and why didn’t I call. I answered they had only gotten that bad a couple days ago, and I didn’t think I should call because I was trying to be brave and suck it up. Luckily, my new doctor does not believe in “sucking it up” and made immediate changes to my drug regimen. He lowered the daily to dose from 8 to 7, and gave me an extra week off so my hands and feet could heal. He said that I shouldn’t consider the change to be a setback, that it just takes some time to find the right combination that works for each individual.
I was looking forward to the next scan so that I could see if the Xeloda was working. Unfortunately, Dr. H, wanted to wait a couple of more weeks because of the scan I had while in the ER in October. The October scan, you may remember, showed growth of the tumor and spreading of the Cancer to two new spots. Because I just had the October scan, the doctor suggested waiting until December. So now my next scan is Wednesday, December 14th. Just in time for Christmas. If it’s good news, what a great present that will be! If it’s bad news, maybe it will be time for a trip somewhere warm and sunny for awhile.
I’ve really been struggling with Christmas this year. My kids will be the first to tell you that I am the Christmas Queen. I love all things Christmas and am huge on making fun family traditions and spending lots of family time together, I usually start Christmas shopping in October. But not this year. This year seems so different to me. The first time I had Cancer the treatments ended on October 31, so by Christmas we were celebrating not only the holiday, but also the fact that I was “in remission”. We were so happy, and also so naive. We never spent anytime thinking or talking about the possibility of the Cancer coming back. Heck, I was only a Stage 1, and I did all the “right” things. It wasn’t coming back. Our lives resumed and we didn’t look back.
What a different life we are leading now. There is no “remission” for my anymore. There will never be a day when a doctor will say “You’re cured!”. No one will be ringing a bell to celebrate my last day of treatment. I read a quote the other day that has really stuck with me: “It never occurred to me that one day I’d wake up sick and never get better.” It always takes something big, like Cancer, to make you stop and truly appreciate what you have. I feel the overwhelming need to make each day count now. But that’s impossible. Some days I can’t make it off the couch, so how do I make that day count? Or what about the days I spend at the hospital? Or the doctor’s office? How do I make those days “count”? I feel guilty sometimes at the end of the day when I haven’t done anything particularly memorable or special. I am suppose to make each day count! Making it to Jewel to buy dog food doesn’t really “count”, does it?
And so once again, I find that Cancer makes me readjust my way of thinking. For a day to “count” it doesn’t need to have had something stupendous happen. Getting off the couch and going to Jewel does, in fact, count. It counts because I know the effort I made to do it. I am proud of myself for making it out of the house that day. And sometimes, that has to be enough. Sometimes, most of the time actually, I need to be kinder to myself. I need to acknowledge the small things I accomplish each day. I try to do one thing each day that will make me proud of myself. God loves me just the way I am, so shouldn’t I? I thank God everyday for all the things and people in my life. And while it’s hard to say “Hey God, thanks for the Cancer”, what I do say is “Hey God, thanks for giving me people who care about me that are helping me get through this Cancer one day at a time. Thanks for making me brave. Thanks for trusting me to use my Cancer as a way to teach and help others.” Every day counts, even when it’s a bad one. Until next time, Sue