September 24, 2016
I have been really struggling the last week or so. The news that the Cancer has spread really knocked me for a loop. I’ve spent a lot of time (in my pajamas, eating powdered donuts and petting my cat) overthinking everything about the Cancer. I’ve felt such a wide range of emotions- from sad to angry to distraught. I feel like I have lost the past 3 months to Cancer because the chemo I was on didn’t work. What’s the point in catching the Cancer early only to have it progress so quickly? I know the survival statistics, but until now I have chosen to ignore them. I pushed them to the back of my mind and locked them up. I am not going to be the 78% that die within five years of diagnosis. That is not going to be me. I am going to be in the 22% that survive! But all the positive thinking in the world can’t hide what the scans show. It’s the dreaded “P” word- progression.
So, now what? That’s the scary part of this whole ordeal, trying to figure out if you are doing the “right” thing. There are so many options, and it’s no easy task to navigate through them all. Having terminal Cancer can very easily be a full time job. The amount of information, and misinformation, is staggering. When I wake up each morning and check my Facebook, I see at least a dozen posts in the two Cancer groups I belong to. Often I get sucked in and start reading them all. I have become “friends” with many of the people in the groups. We laugh together and cry together, we hope together and mourn together. Many of the groups like to call it a “sisterhood”. I am not sure how I feel about the whole “sister” thing, but I do get a lot of comfort from the groups. If we were sisters, we would be one messed up, unlucky family.
The best thing about the online Cancer communities I belong to is that you can find other people who are experiencing what you are- both physically and mentally. Those lovely mouth sores and painful cracks on my tongue? Yep- a lot of people get them. Even though the doctor mentioned in passing that this could happen, at the time of the visit you sometimes tune out some of the bad stuff. If you spent time thinking of every single side effect you might get, you would never take the drugs. Take for example the multitude of commercials you see on TV these days advertising drugs- they mention all of the wondrous side effects such as “anal leakage” or “people who take drug XYZ have been known to have sexual encounters that they don’t remember.” Who is going to sign up for either of those drugs?? So when it’s the middle of the night and you wonder about a side effect, you just hop online and ask your Cancer group and shazam! You have multiple answers within minutes, along with suggestions of what has helped with the side effects. Sometimes the suggestions are a prescription drug that I should ask my doctor for, but more often it is just a random something that a person has found helpful, such as the recommendation that gelato helps better than ice cream for the mouth sores. While no one has documented the healing power of, say, caramel, I firmly believe it has curative powers (Well, maybe it just helps for my mental breakdowns- it didn’t actually cure anything but my low spirits. Recently I have taken to eating several caramel apples a day. Kara has made many attempts to limit my caramel apple eating, but so far I am winning that battle by saying that I am still getting the benefits of the apples! She won’t buy them for me though- she won’t be an “enabler” to the caramel fix. That’s ok, Jewel sells them in three packs.)
In the end, I truly appreciate and cherish my Facebook Cancer groups. Even though there are often encouraging things to hear, there are also difficult things too. This week a member asked for prayers as she was entering hospice. That’s a real fear that all of us share, and it’s a hard one to hear. But having a group to belong to helps. Sometimes you have to find a new group, or a different group, then you are use to. You don’t need to get rid of any of your personal “tribe”- of course you keep your friends. But it’s okay to feel like you need something more when bad things happen. Sometimes you just need to be around people who “get it” and are going through it too. And that’s okay. You don’t need to pick one group over another. They can both be your tribe. Just in different ways. Sometimes you have to put yourself first, and get the help wherever you can. Whether it’s on Facebook, at a support group, a bible study group, or even just having one crazy friend who always listens and makes you laugh… find the help you need and own it. It’s okay to take the help, in whatever shape or form it arrives.
John 15:13: Greater love has no one than this: to lay down one’s life for one’s friends.
That may be setting the bar a bit high, but we all deserve friends like this, as long as we are able to be that friend too. Until next time, Sue
I have been really struggling the last week or so. The news that the Cancer has spread really knocked me for a loop. I’ve spent a lot of time (in my pajamas, eating powdered donuts and petting my cat) overthinking everything about the Cancer. I’ve felt such a wide range of emotions- from sad to angry to distraught. I feel like I have lost the past 3 months to Cancer because the chemo I was on didn’t work. What’s the point in catching the Cancer early only to have it progress so quickly? I know the survival statistics, but until now I have chosen to ignore them. I pushed them to the back of my mind and locked them up. I am not going to be the 78% that die within five years of diagnosis. That is not going to be me. I am going to be in the 22% that survive! But all the positive thinking in the world can’t hide what the scans show. It’s the dreaded “P” word- progression.
So, now what? That’s the scary part of this whole ordeal, trying to figure out if you are doing the “right” thing. There are so many options, and it’s no easy task to navigate through them all. Having terminal Cancer can very easily be a full time job. The amount of information, and misinformation, is staggering. When I wake up each morning and check my Facebook, I see at least a dozen posts in the two Cancer groups I belong to. Often I get sucked in and start reading them all. I have become “friends” with many of the people in the groups. We laugh together and cry together, we hope together and mourn together. Many of the groups like to call it a “sisterhood”. I am not sure how I feel about the whole “sister” thing, but I do get a lot of comfort from the groups. If we were sisters, we would be one messed up, unlucky family.
The best thing about the online Cancer communities I belong to is that you can find other people who are experiencing what you are- both physically and mentally. Those lovely mouth sores and painful cracks on my tongue? Yep- a lot of people get them. Even though the doctor mentioned in passing that this could happen, at the time of the visit you sometimes tune out some of the bad stuff. If you spent time thinking of every single side effect you might get, you would never take the drugs. Take for example the multitude of commercials you see on TV these days advertising drugs- they mention all of the wondrous side effects such as “anal leakage” or “people who take drug XYZ have been known to have sexual encounters that they don’t remember.” Who is going to sign up for either of those drugs?? So when it’s the middle of the night and you wonder about a side effect, you just hop online and ask your Cancer group and shazam! You have multiple answers within minutes, along with suggestions of what has helped with the side effects. Sometimes the suggestions are a prescription drug that I should ask my doctor for, but more often it is just a random something that a person has found helpful, such as the recommendation that gelato helps better than ice cream for the mouth sores. While no one has documented the healing power of, say, caramel, I firmly believe it has curative powers (Well, maybe it just helps for my mental breakdowns- it didn’t actually cure anything but my low spirits. Recently I have taken to eating several caramel apples a day. Kara has made many attempts to limit my caramel apple eating, but so far I am winning that battle by saying that I am still getting the benefits of the apples! She won’t buy them for me though- she won’t be an “enabler” to the caramel fix. That’s ok, Jewel sells them in three packs.)
In the end, I truly appreciate and cherish my Facebook Cancer groups. Even though there are often encouraging things to hear, there are also difficult things too. This week a member asked for prayers as she was entering hospice. That’s a real fear that all of us share, and it’s a hard one to hear. But having a group to belong to helps. Sometimes you have to find a new group, or a different group, then you are use to. You don’t need to get rid of any of your personal “tribe”- of course you keep your friends. But it’s okay to feel like you need something more when bad things happen. Sometimes you just need to be around people who “get it” and are going through it too. And that’s okay. You don’t need to pick one group over another. They can both be your tribe. Just in different ways. Sometimes you have to put yourself first, and get the help wherever you can. Whether it’s on Facebook, at a support group, a bible study group, or even just having one crazy friend who always listens and makes you laugh… find the help you need and own it. It’s okay to take the help, in whatever shape or form it arrives.
John 15:13: Greater love has no one than this: to lay down one’s life for one’s friends.
That may be setting the bar a bit high, but we all deserve friends like this, as long as we are able to be that friend too. Until next time, Sue
September 12, 2016
I found out two things today. The first is that my Cancer spread too much to be able to have the surgery I was hoping for. The second is that Vera Bradley, the queen of all things beautiful in handbags and so on, has a Cancer Foundation. Seriously??? Why haven’t I been spending all of my time there? Kara and I pondered that question while we were waiting for the oncologist today. I wondered if the chairs and couches in the waiting rooms would be covered with Vera fabrics. Kara suggested that perhaps the doctors coats would be Vera designs. Which then led me to wonder if the paper exam gowns would be Vera. Where would it ever end? Would the chemo bags be designed? The pills? Certainly the bandages would sport a Vera design. And would they give out Vera swag to the patients? I would be willing to drive to the Indiana location if I would get some free Vera Cancer swag.
I found out about the Vera Cancer Foundation when they sent me an invitation to an event in October called Tickled Pink. For $75 a ticket you will have cocktails and delicious catered food and raise money for Cancer research. 89 cents of every dollar raised goes directly to Cancer research. That’s huge! In 2014 they raised just over 3 million dollars. Way to go Vera!
But back to the other thing- the no surgery thing. It was very disappointing to hear that the option of surgery is off the table now. The tumor grew and spread into two other areas near my lungs and chest. Surgery would not be able to remove all of the Cancer. My oncologist remarked that my Cancer was a “very odd case” and maybe needed further testing. He said it is behaving like lung Cancer, but tested positive for being breast Cancer. Still, he isn’t quite sure how he wants to proceed. Therefore, he is taking my tumor to the interdisciplinary committee that meets every Wednesday at the University of Chicago to brainstorm about difficult and unique Cancers. I qualify.
No matter what the committee decides, the only options at this point now are chemo and radiation. They just have to decide which drugs to try next. The good news of the day was that the doctor didn’t feel the spine thing was anything to worry about right now. So on that happy note, I bid you all a good night and will follow up with another post when I have more news. Thank you all for your constant support. Until next time, Sue
I found out two things today. The first is that my Cancer spread too much to be able to have the surgery I was hoping for. The second is that Vera Bradley, the queen of all things beautiful in handbags and so on, has a Cancer Foundation. Seriously??? Why haven’t I been spending all of my time there? Kara and I pondered that question while we were waiting for the oncologist today. I wondered if the chairs and couches in the waiting rooms would be covered with Vera fabrics. Kara suggested that perhaps the doctors coats would be Vera designs. Which then led me to wonder if the paper exam gowns would be Vera. Where would it ever end? Would the chemo bags be designed? The pills? Certainly the bandages would sport a Vera design. And would they give out Vera swag to the patients? I would be willing to drive to the Indiana location if I would get some free Vera Cancer swag.
I found out about the Vera Cancer Foundation when they sent me an invitation to an event in October called Tickled Pink. For $75 a ticket you will have cocktails and delicious catered food and raise money for Cancer research. 89 cents of every dollar raised goes directly to Cancer research. That’s huge! In 2014 they raised just over 3 million dollars. Way to go Vera!
But back to the other thing- the no surgery thing. It was very disappointing to hear that the option of surgery is off the table now. The tumor grew and spread into two other areas near my lungs and chest. Surgery would not be able to remove all of the Cancer. My oncologist remarked that my Cancer was a “very odd case” and maybe needed further testing. He said it is behaving like lung Cancer, but tested positive for being breast Cancer. Still, he isn’t quite sure how he wants to proceed. Therefore, he is taking my tumor to the interdisciplinary committee that meets every Wednesday at the University of Chicago to brainstorm about difficult and unique Cancers. I qualify.
No matter what the committee decides, the only options at this point now are chemo and radiation. They just have to decide which drugs to try next. The good news of the day was that the doctor didn’t feel the spine thing was anything to worry about right now. So on that happy note, I bid you all a good night and will follow up with another post when I have more news. Thank you all for your constant support. Until next time, Sue
September 12, 2016
Sorry for the extra time away, but it’s been a bit of a roller-coaster lately. It has been a tough time physically, but a great time mentally- well, as great as Stage 4 can ever be. Perfection would be to have both be great at the same time, but I will take what I can get. If Hope throws a crumb my way, I am happy to scoop it up. First, the bad news. (Sidebar- I always wonder what people like to hear first- the good news or the bad news. For me, it’s always the bad news first. Why have that momentary glimpse of happiness to just be dragged into a pit of despair in the next moment? Well, a pit of despair may be a bit dramatic, but you get what I’m saying. If I hear the bad news first, I have my moment of contemplation, and before I can even process what degree of sadness needs to be attached, I am already hearing the good news! That’s my theory anyway.) So here is the bad news. The PET scan did in fact show the size of the tumor in my lung has grown, which we knew. But we also found out that some surrounding lymph nodes are involved, as well as there being “increased radiotracer uptake between the spinous processes of the L3 and L4 levels” requiring further examination of an MRI of the spine. Yippee Skippee- my Cancer is apparently an overachiever.
I could have waited until after I see the new oncologist tomorrow to post this, but I felt it would be more organic to let all of you experience the tension, anxiety, and outright fear with me. We are in this together, or at least I hope we are. (Applications are now being accepted for the position of middle of the night friends. Must be willing to bring ice cream, or alcohol, depending on the severity of the freak out.) And now that you have had about 36 seconds to digest the bad news, let’s move quickly in the direction of the good news.
This has been an amazing week filled with an outpouring of love and compassion by so many people in my life. And I am not just talking about my kids or best friends, who are always there. I feel so fortunate to have such a close circle of support. But this week has held a lot of beautiful surprises that have touched my soul in ways I would have never expected. As I’ve said before, asking for help can be tough for me, and for other Cancer patients. We are so frightened of losing control of so many things. If I ask for help, it means I have lost another thing I use to do.
Think of it as a score card. There are two columns, a Me/Win column and a Cancer column. Every time I do something I want to do, with no interference from Cancer, the tally mark, the “win”, goes in the Me column. Every time I can’t do something because of the Cancer, the tally mark goes in the Cancer column. This is a real thing that I do. I find it strangely useful. It helps me to keep things in perspective. If my day is having a lot of Cancer tally marks, I know I have to do something to turn it around. When I find myself feeling discouraged and thinking Cancer is winning, I look at the daily results and see that, usually, I am still winning. I am still in control of more things then I think I am. Cancer is not getting more tally marks. The Me column needs to win.
Again, I digress. Back to the good news. I received a box in the mail this week from co-workers at the Comer Ronald McDonald House, many of whom I have never met since I work at the Advocate RMH in Oak Lawn. But these amazing people sent me a big “box of sunshine” to cheer me up. The box (photo above) was filled with an abundance of yellow items. From Juicy Fruit to Raisinets, Velveeta Shells and Cheese to a Subway gift card. If it was yellow like sunshine, it was in the box. Of course I cried when I opened it. The workers there hardly know me, and yet they came together to make a box of sunshine for me!
The next day I got a beautiful card in the mail from my cousins Bev and Barbara and Aunt Virginia who moved to Florida many years ago. I am Facebook friends with cousin Bev, but we haven’t seen each other since we were in high school probably. They have been following the blog and reached out to share their love and support with me. The card included a check, and again I cried. I am so blessed to have such compassionate people on “my team”. Sharing my experience has opened so many hearts and it is my wish that the hearts will stay open and will provide love and compassion to others, long after I am gone. I hope to use my Cancer as a teaching lesson. I think God would agree with that. He has led me here, and now He is letting me figure out what to make of it all. He really trusts me to do the right thing.
And then came the “Sue-vivor” jar. My workplace created a jar (photo above) and asked the volunteers and families who know me to drop in little notes of encouragement. And guess what? Yep, I cried! More tears of joy. I told my office mate / friend Colleen, that I was really taken by surprise because I have only worked there for a year. Volunteers only work two shifts a month, so I don’t see them everyday. I didn’t think I had made much of an impact on anyone at the House, but the Sue-vivor jar showed me a different story. Words of love, praise, and encouragement abounded. From short little notes to long letters, they all fell upon my heart. (The box of Fannie May Pixies fell upon my hips..but what the heck! If you can’t eat candy when you have Stage 4 Cancer, when can you?)
The week just kept getting better and better. Tazz, a high school girl that worked as an intern at RMH with me over the summer, sent me little silver tags to put on my Converse, reminders of hope. I only worked with Tazz for a couple of weeks, and yet she reached out to me in such a meaningful way. A mom and daughter who are frequent guests at RMH sent me a Winnie the Pooh card (yes, he is my favorite) along with a gift card to Chili’s. The love and kindness was surely raining down on me. A woman I’ve known for years from church, Jean, sent me a very inspirational card and message. She said how much she enjoys my blog and how helpful it is for people. I’ve known Jean for years, but we’ve never hung out, so a card from her was that much more special. Annie, a young girl that is part of the theater group I help to run, The Potter’s House, stopped by this week with her mom Patty to bring me a sweet card and a beautiful necklace. The necklace is an elephant, similar to the one on my blog, and Annie thought of me when she saw it. Inside the card was a very sweet message that warmed my heart.
Next was a package from my friend Jenny and her daughter Christi (one of Kara’s best friends / college roommate). They recently went on a pilgrimage that included a stop in Lourdes, France. They visited the grotto where the Virgin Mary appeared to Bernadette. The water there is said to be holy, and so they sent me a bottle of the water, a holy medal, and a gorgeous scarf that Jenny wore while she was there for me, so that it could “soak up all the healing powers.” Tonight, Katherine, one of Kara's friends from high school who participated in many of the plays I directed, sent me a message of love and hope. She said she will be praying to St. Nectarios, the patron saint of cancer patients, for me. She offered to help in any way I needed. God has sure looked out for me this week. Though my health issues were many, the joy I felt from so many people made this week a "win" on my tally sheet.
The people who are in your daily life, your kids, your family, your best friends, they show up every day for you in many different ways. There is such a great comfort knowing they are always there for you. But the people who are on the outskirts of your life, the ones you think hardly notice you are gone for now or that you are having a major crisis, when those people reach out….you sit and think, “Wow, this is really a George Bailey moment.” Maybe my life did make a difference to others. Maybe, just maybe, I did what I set out to do. I made a difference, and God smiled upon me.
And so friends, I challenge you to make a difference in someone’s life. It doesn’t need to be in a big brass band kind of way. It can be that small, quiet encouragement that someone needs. A card, a note, a flower, a hug. Just show up for someone. Be on their team. Let them know they matter, and they are not forgotten. You have the power to make a difference in someone’s life. You can help put a tally mark in the win column. Be there, be vulnerable, be someone’s lifeboat.
Until next time, Sue-vivor
Sorry for the extra time away, but it’s been a bit of a roller-coaster lately. It has been a tough time physically, but a great time mentally- well, as great as Stage 4 can ever be. Perfection would be to have both be great at the same time, but I will take what I can get. If Hope throws a crumb my way, I am happy to scoop it up. First, the bad news. (Sidebar- I always wonder what people like to hear first- the good news or the bad news. For me, it’s always the bad news first. Why have that momentary glimpse of happiness to just be dragged into a pit of despair in the next moment? Well, a pit of despair may be a bit dramatic, but you get what I’m saying. If I hear the bad news first, I have my moment of contemplation, and before I can even process what degree of sadness needs to be attached, I am already hearing the good news! That’s my theory anyway.) So here is the bad news. The PET scan did in fact show the size of the tumor in my lung has grown, which we knew. But we also found out that some surrounding lymph nodes are involved, as well as there being “increased radiotracer uptake between the spinous processes of the L3 and L4 levels” requiring further examination of an MRI of the spine. Yippee Skippee- my Cancer is apparently an overachiever.
I could have waited until after I see the new oncologist tomorrow to post this, but I felt it would be more organic to let all of you experience the tension, anxiety, and outright fear with me. We are in this together, or at least I hope we are. (Applications are now being accepted for the position of middle of the night friends. Must be willing to bring ice cream, or alcohol, depending on the severity of the freak out.) And now that you have had about 36 seconds to digest the bad news, let’s move quickly in the direction of the good news.
This has been an amazing week filled with an outpouring of love and compassion by so many people in my life. And I am not just talking about my kids or best friends, who are always there. I feel so fortunate to have such a close circle of support. But this week has held a lot of beautiful surprises that have touched my soul in ways I would have never expected. As I’ve said before, asking for help can be tough for me, and for other Cancer patients. We are so frightened of losing control of so many things. If I ask for help, it means I have lost another thing I use to do.
Think of it as a score card. There are two columns, a Me/Win column and a Cancer column. Every time I do something I want to do, with no interference from Cancer, the tally mark, the “win”, goes in the Me column. Every time I can’t do something because of the Cancer, the tally mark goes in the Cancer column. This is a real thing that I do. I find it strangely useful. It helps me to keep things in perspective. If my day is having a lot of Cancer tally marks, I know I have to do something to turn it around. When I find myself feeling discouraged and thinking Cancer is winning, I look at the daily results and see that, usually, I am still winning. I am still in control of more things then I think I am. Cancer is not getting more tally marks. The Me column needs to win.
Again, I digress. Back to the good news. I received a box in the mail this week from co-workers at the Comer Ronald McDonald House, many of whom I have never met since I work at the Advocate RMH in Oak Lawn. But these amazing people sent me a big “box of sunshine” to cheer me up. The box (photo above) was filled with an abundance of yellow items. From Juicy Fruit to Raisinets, Velveeta Shells and Cheese to a Subway gift card. If it was yellow like sunshine, it was in the box. Of course I cried when I opened it. The workers there hardly know me, and yet they came together to make a box of sunshine for me!
The next day I got a beautiful card in the mail from my cousins Bev and Barbara and Aunt Virginia who moved to Florida many years ago. I am Facebook friends with cousin Bev, but we haven’t seen each other since we were in high school probably. They have been following the blog and reached out to share their love and support with me. The card included a check, and again I cried. I am so blessed to have such compassionate people on “my team”. Sharing my experience has opened so many hearts and it is my wish that the hearts will stay open and will provide love and compassion to others, long after I am gone. I hope to use my Cancer as a teaching lesson. I think God would agree with that. He has led me here, and now He is letting me figure out what to make of it all. He really trusts me to do the right thing.
And then came the “Sue-vivor” jar. My workplace created a jar (photo above) and asked the volunteers and families who know me to drop in little notes of encouragement. And guess what? Yep, I cried! More tears of joy. I told my office mate / friend Colleen, that I was really taken by surprise because I have only worked there for a year. Volunteers only work two shifts a month, so I don’t see them everyday. I didn’t think I had made much of an impact on anyone at the House, but the Sue-vivor jar showed me a different story. Words of love, praise, and encouragement abounded. From short little notes to long letters, they all fell upon my heart. (The box of Fannie May Pixies fell upon my hips..but what the heck! If you can’t eat candy when you have Stage 4 Cancer, when can you?)
The week just kept getting better and better. Tazz, a high school girl that worked as an intern at RMH with me over the summer, sent me little silver tags to put on my Converse, reminders of hope. I only worked with Tazz for a couple of weeks, and yet she reached out to me in such a meaningful way. A mom and daughter who are frequent guests at RMH sent me a Winnie the Pooh card (yes, he is my favorite) along with a gift card to Chili’s. The love and kindness was surely raining down on me. A woman I’ve known for years from church, Jean, sent me a very inspirational card and message. She said how much she enjoys my blog and how helpful it is for people. I’ve known Jean for years, but we’ve never hung out, so a card from her was that much more special. Annie, a young girl that is part of the theater group I help to run, The Potter’s House, stopped by this week with her mom Patty to bring me a sweet card and a beautiful necklace. The necklace is an elephant, similar to the one on my blog, and Annie thought of me when she saw it. Inside the card was a very sweet message that warmed my heart.
Next was a package from my friend Jenny and her daughter Christi (one of Kara’s best friends / college roommate). They recently went on a pilgrimage that included a stop in Lourdes, France. They visited the grotto where the Virgin Mary appeared to Bernadette. The water there is said to be holy, and so they sent me a bottle of the water, a holy medal, and a gorgeous scarf that Jenny wore while she was there for me, so that it could “soak up all the healing powers.” Tonight, Katherine, one of Kara's friends from high school who participated in many of the plays I directed, sent me a message of love and hope. She said she will be praying to St. Nectarios, the patron saint of cancer patients, for me. She offered to help in any way I needed. God has sure looked out for me this week. Though my health issues were many, the joy I felt from so many people made this week a "win" on my tally sheet.
The people who are in your daily life, your kids, your family, your best friends, they show up every day for you in many different ways. There is such a great comfort knowing they are always there for you. But the people who are on the outskirts of your life, the ones you think hardly notice you are gone for now or that you are having a major crisis, when those people reach out….you sit and think, “Wow, this is really a George Bailey moment.” Maybe my life did make a difference to others. Maybe, just maybe, I did what I set out to do. I made a difference, and God smiled upon me.
And so friends, I challenge you to make a difference in someone’s life. It doesn’t need to be in a big brass band kind of way. It can be that small, quiet encouragement that someone needs. A card, a note, a flower, a hug. Just show up for someone. Be on their team. Let them know they matter, and they are not forgotten. You have the power to make a difference in someone’s life. You can help put a tally mark in the win column. Be there, be vulnerable, be someone’s lifeboat.
Until next time, Sue-vivor