August 2. 2016
Cancer sucks. There. I said it. We all know it, but sometimes things need to be said aloud to feel true. If you don’t name it, it is easier to pretend it isn’t true. But in my new “Cancer will be with me forever life”, I need to name it. That doesn’t mean I have to like it, but it does nudge me in the direction of coping and accepting. People who know me, or read my blog, know that for me humor is my go-to Cancer answer. It’s much easier to deal with it in a humorous way for me. If I try to practice some type of calm meditation it only sends me into automatic freak out mode. Too much silence shatters my soul. To enjoy solitude, I realize I need to first come to terms with my new normal. How? That’s the big question. How do I come to accept that I will always have Cancer? One way is through prayer.
I have a really great relationship with my God. He gets me. He always accepts me for who I am, even when I make mistakes. We are, however, at a rough patch right now, with this forever Cancer thing He threw my way. I’m not angry at God, but I am bewildered. We often try to rationalize things in life, but some things, like Cancer, defy rationalization. Asking the “why did God give me Cancer” question in the middle of the night never ends well. Thoughts race through my mind...along with the comments people have made to me. A personal favorite from an acquaintance recently was this “helpful” comment: “Well maybe God gave you Cancer a second time because you didn’t learn the lesson He was trying to teach you the first time.” Wow… really? My God isn’t malicious and vindictive like that. I don’t picture Him saying, “Hey, Sue didn’t suffer enough the first time she had Cancer, so I’ll give it to her again.” It just doesn’t work that way. God loves me, and He listens to my prayers.
I choose to pray to God for understanding and peace. I don’t pray for a miracle, I leave that subject entirely in His hands. And while I don’t fully understand why I have Cancer, I know God always answers my prayers. Sometimes the answer is “no” or “not now”, but there is always an answer. We just need to have faith and trust that God knows what is best for us. When I was diagnosed the first time around, my daughter’s friend, Christi, shared this bible verse with me; “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18. Christi commented that we only see a tiny, tiny part of a huge picture and we just have to trust that God is giving us the best case scenario, and in time He will give us a glimpse of the bigger picture. I find comfort in that. And it teaches me patience.
Recently, God revealed Himself to me through the actions of others in a most glorious way. At my work at Ronald McDonald House, we have groups that come to do yard work for us. One group that comes weekly are members of the Marist High School football team. Even though I am currently on leave from my job, the teacher asked my co-workers if it would be ok for the boys to pray for me. The photo they sent me of the team praying for me made me cry like a baby. To feel the love of people I don’t even know, seeing how they care for me and pray for me, it is beyond comprehension.
People often say they will pray for me, and that makes me feel so blessed. But to see a group of high school boys down on one knee, hands joined, praying for me….that is the message God sends me. That is the peace and understanding I need, the glimpse of the bigger picture. It’s not all about me and taking away my Cancer. It’s about touching the lives of others in a positive, spiritual way. Spreading the love of God for all to see. And if it takes me having Cancer to do that, then so be it. God isn’t just teaching me a lesson, He is using me and my Cancer to teach others. About compassion. About love. About serving one another. When I think about my Cancer as a catalyst for enlightening others, then I know I am blessed by God, not punished. I was chosen to have Cancer so that others would be able to learn from it through me.
“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
Until next time, Sue
Cancer sucks. There. I said it. We all know it, but sometimes things need to be said aloud to feel true. If you don’t name it, it is easier to pretend it isn’t true. But in my new “Cancer will be with me forever life”, I need to name it. That doesn’t mean I have to like it, but it does nudge me in the direction of coping and accepting. People who know me, or read my blog, know that for me humor is my go-to Cancer answer. It’s much easier to deal with it in a humorous way for me. If I try to practice some type of calm meditation it only sends me into automatic freak out mode. Too much silence shatters my soul. To enjoy solitude, I realize I need to first come to terms with my new normal. How? That’s the big question. How do I come to accept that I will always have Cancer? One way is through prayer.
I have a really great relationship with my God. He gets me. He always accepts me for who I am, even when I make mistakes. We are, however, at a rough patch right now, with this forever Cancer thing He threw my way. I’m not angry at God, but I am bewildered. We often try to rationalize things in life, but some things, like Cancer, defy rationalization. Asking the “why did God give me Cancer” question in the middle of the night never ends well. Thoughts race through my mind...along with the comments people have made to me. A personal favorite from an acquaintance recently was this “helpful” comment: “Well maybe God gave you Cancer a second time because you didn’t learn the lesson He was trying to teach you the first time.” Wow… really? My God isn’t malicious and vindictive like that. I don’t picture Him saying, “Hey, Sue didn’t suffer enough the first time she had Cancer, so I’ll give it to her again.” It just doesn’t work that way. God loves me, and He listens to my prayers.
I choose to pray to God for understanding and peace. I don’t pray for a miracle, I leave that subject entirely in His hands. And while I don’t fully understand why I have Cancer, I know God always answers my prayers. Sometimes the answer is “no” or “not now”, but there is always an answer. We just need to have faith and trust that God knows what is best for us. When I was diagnosed the first time around, my daughter’s friend, Christi, shared this bible verse with me; “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18. Christi commented that we only see a tiny, tiny part of a huge picture and we just have to trust that God is giving us the best case scenario, and in time He will give us a glimpse of the bigger picture. I find comfort in that. And it teaches me patience.
Recently, God revealed Himself to me through the actions of others in a most glorious way. At my work at Ronald McDonald House, we have groups that come to do yard work for us. One group that comes weekly are members of the Marist High School football team. Even though I am currently on leave from my job, the teacher asked my co-workers if it would be ok for the boys to pray for me. The photo they sent me of the team praying for me made me cry like a baby. To feel the love of people I don’t even know, seeing how they care for me and pray for me, it is beyond comprehension.
People often say they will pray for me, and that makes me feel so blessed. But to see a group of high school boys down on one knee, hands joined, praying for me….that is the message God sends me. That is the peace and understanding I need, the glimpse of the bigger picture. It’s not all about me and taking away my Cancer. It’s about touching the lives of others in a positive, spiritual way. Spreading the love of God for all to see. And if it takes me having Cancer to do that, then so be it. God isn’t just teaching me a lesson, He is using me and my Cancer to teach others. About compassion. About love. About serving one another. When I think about my Cancer as a catalyst for enlightening others, then I know I am blessed by God, not punished. I was chosen to have Cancer so that others would be able to learn from it through me.
“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
Until next time, Sue
August 10, 2016
This past weekend I took a break from Cancer and headed to Michigan to spend a few days at my friend Jenny’s lake cottage. The cottage (appropriately named Carpe Diem) was right on Lake Michigan and had a wonderful deck that we sat on each night to watch the breathtaking sunset. Every night the stars came out and filled the sky with a beautiful, twinkling show just for us. My friend Noreen saw her first shooting star one night. Many a wish was made on the shooting stars we witnessed and many new memories were made as well. How does that saying go? “Take vacations. Go as many places as you can. You can always make money. You can’t always make memories.” One new goal in my life is to make as many memories as possible, memories that will live on long after I am gone.
Before this blissful weekend away, I often wondered if I would ever be able to take a break from Cancer. To forget, even if just for a moment, about my Cancer. One of my favorite authors, Vladimir Nabokov, said in his book, The Eye, “After all, in order for a man to live happily. a man must know now and then a few moments of complete blankness.” And so I went on a pilgrimage, of sorts, to see if I would be able to experience those “moments of complete blankness.” My discovery? While I fell short of experiencing any moments of complete blankness, I did have some Cancer free moments. Cancer is pretty impossible to forget entirely. Though I did make a valiant effort to avoid thinking about it for extended periods of time. And I will say, while I didn’t have those moments of blankness, I did have moments when Cancer wasn’t the number one thing on my mind, so I consider that a small victory. And at this point in my life, I'll happily take any victory I can get.
One such moment when Cancer went to the back of my mind was when we decided to take a trip in town and treat ourselves to dinner out. Following the trusted advice of Trip Advisor, our group decided to eat at the local Mexican place (I hesitate to use the word restaurant.) We should have been leery from the moment we pulled into the gravel parking lot. The big sign by the road was covered by a new handmade, smaller sign with the new name. (My friend Kathy did point this out, but we voted her down.) On our way to the front door we saw a man apparently sleeping (?) on one of the picnic tables outside. Cause for concern? We decided no. A friendly young woman welcomed us and handed us "menus" and said to sit anywhere. We were the only people there, but still, we had hope. The menu, if you want to call it that, was actually just a couple pieces of paper slipped inside a plastic page protector. Hmmmm. There was plenty to choose from, and there were even 4 photos of the types of meat to choose from. The photos were not appetizing at all, which I found unusual because often the photo looks better then the food. Not in this case. Still, we forged ahead in our quest for Michigan’s best Mexican food ever (as advertised).
The cook (at least we think he was the cook) came out to take our order. (Kathy later remarked that she wondered if he used a curling iron on his hair. I had not noticed the hair because I was so distracted by the tattoos covering his arms and the generally unkempt look he was sporting). We ordered a variety of food and hoped for the best with the meat selections we made. While we waited, I kept looking around waiting for the bathroom door to creak open and reveal an evil villain from a Lifetime movie. It felt a wee bit shady inside.
Out came the “food” and to our surprise, for the first time in my life I think, the photo of the food actually looked exactly like the food! This was not a good thing. The meat was what I would call “questionable”. Otherwise known as….mystery meat. We all looked around at each other to see who would try it first. Kara was the brave one and took a bite of her taco. She said it wasn’t too bad, so we all started to eat. None of us finished. Actually, we mostly took one bite then covered the paper plate with our napkin. Kara took all of our food filled plates, after a respectable time of course, and discarded them quickly and quietly in the nearby garbage can. We hurriedly paid the bill and made a speedy exit. On our way out a couple was coming in to eat and I did manage a quick, warning whisper of “good luck” to them. The sleeping man was still passed out at the picnic table. Hmmm... so many mysteries left unsolved.
The adventurous dinner out did provide my mind with an escape from the nearly constant murmur of “IhavecancerIhavecancerIhavecancer” that echoes in my mind. Complete blankness may be impossible for me to achieve, but I know now that I can steal moments away from Cancer. Cancer doesn’t get to take over my entire life all the time. I am working on finding more moments to steal to make my own and more memories to make. Less Cancer, more me. Until next time, Sue
This past weekend I took a break from Cancer and headed to Michigan to spend a few days at my friend Jenny’s lake cottage. The cottage (appropriately named Carpe Diem) was right on Lake Michigan and had a wonderful deck that we sat on each night to watch the breathtaking sunset. Every night the stars came out and filled the sky with a beautiful, twinkling show just for us. My friend Noreen saw her first shooting star one night. Many a wish was made on the shooting stars we witnessed and many new memories were made as well. How does that saying go? “Take vacations. Go as many places as you can. You can always make money. You can’t always make memories.” One new goal in my life is to make as many memories as possible, memories that will live on long after I am gone.
Before this blissful weekend away, I often wondered if I would ever be able to take a break from Cancer. To forget, even if just for a moment, about my Cancer. One of my favorite authors, Vladimir Nabokov, said in his book, The Eye, “After all, in order for a man to live happily. a man must know now and then a few moments of complete blankness.” And so I went on a pilgrimage, of sorts, to see if I would be able to experience those “moments of complete blankness.” My discovery? While I fell short of experiencing any moments of complete blankness, I did have some Cancer free moments. Cancer is pretty impossible to forget entirely. Though I did make a valiant effort to avoid thinking about it for extended periods of time. And I will say, while I didn’t have those moments of blankness, I did have moments when Cancer wasn’t the number one thing on my mind, so I consider that a small victory. And at this point in my life, I'll happily take any victory I can get.
One such moment when Cancer went to the back of my mind was when we decided to take a trip in town and treat ourselves to dinner out. Following the trusted advice of Trip Advisor, our group decided to eat at the local Mexican place (I hesitate to use the word restaurant.) We should have been leery from the moment we pulled into the gravel parking lot. The big sign by the road was covered by a new handmade, smaller sign with the new name. (My friend Kathy did point this out, but we voted her down.) On our way to the front door we saw a man apparently sleeping (?) on one of the picnic tables outside. Cause for concern? We decided no. A friendly young woman welcomed us and handed us "menus" and said to sit anywhere. We were the only people there, but still, we had hope. The menu, if you want to call it that, was actually just a couple pieces of paper slipped inside a plastic page protector. Hmmmm. There was plenty to choose from, and there were even 4 photos of the types of meat to choose from. The photos were not appetizing at all, which I found unusual because often the photo looks better then the food. Not in this case. Still, we forged ahead in our quest for Michigan’s best Mexican food ever (as advertised).
The cook (at least we think he was the cook) came out to take our order. (Kathy later remarked that she wondered if he used a curling iron on his hair. I had not noticed the hair because I was so distracted by the tattoos covering his arms and the generally unkempt look he was sporting). We ordered a variety of food and hoped for the best with the meat selections we made. While we waited, I kept looking around waiting for the bathroom door to creak open and reveal an evil villain from a Lifetime movie. It felt a wee bit shady inside.
Out came the “food” and to our surprise, for the first time in my life I think, the photo of the food actually looked exactly like the food! This was not a good thing. The meat was what I would call “questionable”. Otherwise known as….mystery meat. We all looked around at each other to see who would try it first. Kara was the brave one and took a bite of her taco. She said it wasn’t too bad, so we all started to eat. None of us finished. Actually, we mostly took one bite then covered the paper plate with our napkin. Kara took all of our food filled plates, after a respectable time of course, and discarded them quickly and quietly in the nearby garbage can. We hurriedly paid the bill and made a speedy exit. On our way out a couple was coming in to eat and I did manage a quick, warning whisper of “good luck” to them. The sleeping man was still passed out at the picnic table. Hmmm... so many mysteries left unsolved.
The adventurous dinner out did provide my mind with an escape from the nearly constant murmur of “IhavecancerIhavecancerIhavecancer” that echoes in my mind. Complete blankness may be impossible for me to achieve, but I know now that I can steal moments away from Cancer. Cancer doesn’t get to take over my entire life all the time. I am working on finding more moments to steal to make my own and more memories to make. Less Cancer, more me. Until next time, Sue
August 17, 2016
What’s worse than chemo? I ask myself that question quite often lately. I ask it in the following way; Would I rather go to the dentist or have chemo? It’s kind of like the “Would You Rather” game. You know the game, the one where you ask odd “Would you rather” questions. For example, would you rather eat taco tater tot casserole every night for a month or sit next to a screaming toddler for an 8 hour flight? (Without a doubt the taco tater tot casserole wins!) In this new game I play, I try to psych myself into believing that chemo isn’t so bad. I try to think of times I would choose chemo over the other choice. It’s not often, but it is sometimes preferable. Obviously in the bigger picture, my Cancer is never preferable, but sometimes chemo can be the better choice. It's all in how you look at it.
This leads to the other trick I play on myself, and I think it’s one that we should all use. Every time you say, “I have to....” change the word “have” to “get”. So instead of complaining that “I have to go grocery shopping”, say “I get to go grocery shopping.” If you consistently do this, you will find the way to a more grateful existence. You are lucky that you get to grocery shop, lucky that you have money to shop and access to so many stores that have food. Try it a few times. “I have to pick the kids up from the mall,” becomes “I get to pick the kids up at the mall.” Think of all the people who want children but aren’t able to have them. Or think of how lucky you are to have a car to pick them up in. It can go on and on. So when I say, even it it is just to myself, “I have to have chemo,” I stop and think that I need to be grateful that chemo is available to me. There are people all around the world that don’t have access to great medical care. Sure, it would be great if I didn’t need chemo in the first place, but since I do have Cancer, at least I am fortunate to live in a place where I can get the medical treatments I need. So even though chemo sucks, I try to frame it in the "I get to have chemo" picture, because honestly, getting chemo is better then not having any treatment options left.
On the medical front, things are going pretty well with the Ibrance and Letrozole drugs I am on. Because my white blood count was so low last cycle, my oncologist lowered the dose from 125 to 100. I’m not sure how I feel about that. I know that my oncologist didn’t want me on Ibrance because it was “very new” and not something she was very familiar with. But the oncologist I went to for my second opinion, at the Dana Farber Cancer Institute in Boston, has been having great success over the past year treating her patients with it. So when my doctor lowered the dose at the first sign of trouble, I felt like maybe that wasn’t the right decision. I am not the type of person who gives up easily, and I was willing to have another month of having a low white blood count in exchange for the maximum benefit of the drug. Having a low white blood count means I have to be more careful about being around big crowds, or small children, or people who are ill. The plus to a low white blood count is that I am not allowed to empty the kitty litter box!
In the end, it isn’t really up to me about the medicine though. It’s one more thing that I have no control over. Just because I want the higher dose doesn’t mean I get it. But what I do have a choice about is who I see for my treatment. After yet another demoralizing trip to my current oncologist this week, (which included another public scolding by Surly Nurse about me not following her rules), I have decided to find a new oncologist. While I am not looking forward to the massive amount of paperwork involved in switching, I know it’s for the best. I will have this disease for the rest of my life, and if I don’t feel good about my medical team, then it’s time to change. I have begun the daunting process of the search for the new oncologist. I will be sure to let you all know how it goes. In the meantime, remember to focus on the many wonderful things you “get” to do, and stop seeing things in a negative “have" to do kind of way. It truly does help. Until next time, Sue
What’s worse than chemo? I ask myself that question quite often lately. I ask it in the following way; Would I rather go to the dentist or have chemo? It’s kind of like the “Would You Rather” game. You know the game, the one where you ask odd “Would you rather” questions. For example, would you rather eat taco tater tot casserole every night for a month or sit next to a screaming toddler for an 8 hour flight? (Without a doubt the taco tater tot casserole wins!) In this new game I play, I try to psych myself into believing that chemo isn’t so bad. I try to think of times I would choose chemo over the other choice. It’s not often, but it is sometimes preferable. Obviously in the bigger picture, my Cancer is never preferable, but sometimes chemo can be the better choice. It's all in how you look at it.
This leads to the other trick I play on myself, and I think it’s one that we should all use. Every time you say, “I have to....” change the word “have” to “get”. So instead of complaining that “I have to go grocery shopping”, say “I get to go grocery shopping.” If you consistently do this, you will find the way to a more grateful existence. You are lucky that you get to grocery shop, lucky that you have money to shop and access to so many stores that have food. Try it a few times. “I have to pick the kids up from the mall,” becomes “I get to pick the kids up at the mall.” Think of all the people who want children but aren’t able to have them. Or think of how lucky you are to have a car to pick them up in. It can go on and on. So when I say, even it it is just to myself, “I have to have chemo,” I stop and think that I need to be grateful that chemo is available to me. There are people all around the world that don’t have access to great medical care. Sure, it would be great if I didn’t need chemo in the first place, but since I do have Cancer, at least I am fortunate to live in a place where I can get the medical treatments I need. So even though chemo sucks, I try to frame it in the "I get to have chemo" picture, because honestly, getting chemo is better then not having any treatment options left.
On the medical front, things are going pretty well with the Ibrance and Letrozole drugs I am on. Because my white blood count was so low last cycle, my oncologist lowered the dose from 125 to 100. I’m not sure how I feel about that. I know that my oncologist didn’t want me on Ibrance because it was “very new” and not something she was very familiar with. But the oncologist I went to for my second opinion, at the Dana Farber Cancer Institute in Boston, has been having great success over the past year treating her patients with it. So when my doctor lowered the dose at the first sign of trouble, I felt like maybe that wasn’t the right decision. I am not the type of person who gives up easily, and I was willing to have another month of having a low white blood count in exchange for the maximum benefit of the drug. Having a low white blood count means I have to be more careful about being around big crowds, or small children, or people who are ill. The plus to a low white blood count is that I am not allowed to empty the kitty litter box!
In the end, it isn’t really up to me about the medicine though. It’s one more thing that I have no control over. Just because I want the higher dose doesn’t mean I get it. But what I do have a choice about is who I see for my treatment. After yet another demoralizing trip to my current oncologist this week, (which included another public scolding by Surly Nurse about me not following her rules), I have decided to find a new oncologist. While I am not looking forward to the massive amount of paperwork involved in switching, I know it’s for the best. I will have this disease for the rest of my life, and if I don’t feel good about my medical team, then it’s time to change. I have begun the daunting process of the search for the new oncologist. I will be sure to let you all know how it goes. In the meantime, remember to focus on the many wonderful things you “get” to do, and stop seeing things in a negative “have" to do kind of way. It truly does help. Until next time, Sue
August 24, 2016
I’ve been going to a weekly support group at The Wellness House in Hinsdale that is just for women with MBC. It’s a great group and I’ve already learned a lot about both the disease and the treatments that are available. Today we spent some time talking about the practically non-existent funding for Metastatic Breast Cancer, and so I thought I would use my blog today to help educate people about MBC and charities. I myself was very surprised by what I found out.
The first thing people need to hear is that no one dies from breast cancer in the breast, they die when the cancer spreads to other organs- that is what metastatic means- it means that the cancer has spread. A great website for more information is metavivor.org. I call myself a metavivor instead of a survivor because I am surviving and living each day with metastatic breast cancer. As a metavivor I am appalled by the lack of funding for MBC. An estimated 30% of breast cancers will become metastatic, yet on average only 2% of research funding is actually spent on trying to find a cure for MBC. The majority of money raised is spent on awareness and early detection. My early detection did nothing for me. I’m here, just two years after my initial diagnosis, living with an incurable disease. A pink ribbon does nothing to help me or other metavivors.
Last year the Susan G. Komen organization raised approximately $250 million dollars, yet only 16.5% of that money was donated for research. For a group that claims they are “working for a cure” their numbers are dismal and insulting. Don’t get me wrong, I do appreciate the many volunteers who donate both their time and their money, but I just want people to be more informed about where their money is, and isn’t, going. How does buying a pink Kitchenaid mixer in October really benefit me and other metavivors? Cancer is not pink and it is not pretty. All the pink boas and pink ribbons in the world won’t help cure my disease. Only research will.
The picture at the top of my blog, the elephant holding a Metavivor ribbon, is a symbol of MBC being the elephant in a pink room. One of our slogans, Don’t Ignore Stage 4. So what can you do to help Stage 4 people? You can certainly donate to a big organization if that is what makes you comfortable. Or you can donate to a smaller organization like Metavivor, they give 100% of the money raised to research. But if you really, truly want to help that person you know who is fighting Cancer, do something for that person. The financial toll on people living with Cancer is huge. From co-pays at the doctors and pharmacy, to gas money to get back and forth, the person with Cancer needs your help.
The chemo medicine I am on, Ibrance, is quite expensive. The first month I went to pick it up I was speechless at the price...wait for it...are you sitting down??? For the 21 pills the cost was...just over $12,000!!! Some people have to choose between paying their mortgage or getting their medicine. What if your co-pay was 20%?? Who can afford even that? Luckily for me my insurance covers most of it and I only have to pay $124. Still, since I am on an unpaid leave from my job (Family Medical Leave Act) that $124 a month adds up. Add to that the cost of the 2 other drugs I am on, the cost of driving back and forth to treatment, the cost of the labs I need every three weeks...it’s expensive to be sick in America.
I realize statistics and information can be boring to read and learn about, but if you are reading my blog, then you know me, therefore, you now know someone who is living with a terminal illness that is barely being funded for research. Research where your donations are going, make informed decisions, and give what you can, whether it’s money or your time.
Meanwhile, back in Cancer town, it’s been a struggle the past couple of days. I have been experiencing some new and wonderful side effects from the chemo. Two days ago the base of my neck became swollen, followed by difficulty in swallowing. The next day dozens of small sores appeared in my mouth and throat. To add to all that fun, large “cracks”, for lack of a better description, appeared on my tongue. So long to red sauce and citrus! My doctor ordered a CT scan of the neck to try and figure out what could be causing the swelling. I will be getting that done on Thursday afternoon, so please keep me in your thoughts and prayers. And don’t google it! Google always tells you your problem is Cancer! Until next time, Sue
I’ve been going to a weekly support group at The Wellness House in Hinsdale that is just for women with MBC. It’s a great group and I’ve already learned a lot about both the disease and the treatments that are available. Today we spent some time talking about the practically non-existent funding for Metastatic Breast Cancer, and so I thought I would use my blog today to help educate people about MBC and charities. I myself was very surprised by what I found out.
The first thing people need to hear is that no one dies from breast cancer in the breast, they die when the cancer spreads to other organs- that is what metastatic means- it means that the cancer has spread. A great website for more information is metavivor.org. I call myself a metavivor instead of a survivor because I am surviving and living each day with metastatic breast cancer. As a metavivor I am appalled by the lack of funding for MBC. An estimated 30% of breast cancers will become metastatic, yet on average only 2% of research funding is actually spent on trying to find a cure for MBC. The majority of money raised is spent on awareness and early detection. My early detection did nothing for me. I’m here, just two years after my initial diagnosis, living with an incurable disease. A pink ribbon does nothing to help me or other metavivors.
Last year the Susan G. Komen organization raised approximately $250 million dollars, yet only 16.5% of that money was donated for research. For a group that claims they are “working for a cure” their numbers are dismal and insulting. Don’t get me wrong, I do appreciate the many volunteers who donate both their time and their money, but I just want people to be more informed about where their money is, and isn’t, going. How does buying a pink Kitchenaid mixer in October really benefit me and other metavivors? Cancer is not pink and it is not pretty. All the pink boas and pink ribbons in the world won’t help cure my disease. Only research will.
The picture at the top of my blog, the elephant holding a Metavivor ribbon, is a symbol of MBC being the elephant in a pink room. One of our slogans, Don’t Ignore Stage 4. So what can you do to help Stage 4 people? You can certainly donate to a big organization if that is what makes you comfortable. Or you can donate to a smaller organization like Metavivor, they give 100% of the money raised to research. But if you really, truly want to help that person you know who is fighting Cancer, do something for that person. The financial toll on people living with Cancer is huge. From co-pays at the doctors and pharmacy, to gas money to get back and forth, the person with Cancer needs your help.
The chemo medicine I am on, Ibrance, is quite expensive. The first month I went to pick it up I was speechless at the price...wait for it...are you sitting down??? For the 21 pills the cost was...just over $12,000!!! Some people have to choose between paying their mortgage or getting their medicine. What if your co-pay was 20%?? Who can afford even that? Luckily for me my insurance covers most of it and I only have to pay $124. Still, since I am on an unpaid leave from my job (Family Medical Leave Act) that $124 a month adds up. Add to that the cost of the 2 other drugs I am on, the cost of driving back and forth to treatment, the cost of the labs I need every three weeks...it’s expensive to be sick in America.
I realize statistics and information can be boring to read and learn about, but if you are reading my blog, then you know me, therefore, you now know someone who is living with a terminal illness that is barely being funded for research. Research where your donations are going, make informed decisions, and give what you can, whether it’s money or your time.
Meanwhile, back in Cancer town, it’s been a struggle the past couple of days. I have been experiencing some new and wonderful side effects from the chemo. Two days ago the base of my neck became swollen, followed by difficulty in swallowing. The next day dozens of small sores appeared in my mouth and throat. To add to all that fun, large “cracks”, for lack of a better description, appeared on my tongue. So long to red sauce and citrus! My doctor ordered a CT scan of the neck to try and figure out what could be causing the swelling. I will be getting that done on Thursday afternoon, so please keep me in your thoughts and prayers. And don’t google it! Google always tells you your problem is Cancer! Until next time, Sue
August 31. 2016
Greetings friends. I can’t believe I am already writing the post that I had hoped I wouldn’t write for a few years….but here it is. The chemo drugs are not working and my tumor is growing. Breathe in. Breathe out. Repeat. Those words have been my reality the past 5 days. My “first line” of chemotherapy drugs failed miserably. And now, ready or not, I am forced to take a step in another direction. It doesn’t feel like a step though. It feels more like a giant leap from one trapeze to the next wearing a blindfold with no net to catch me if I fall.
What followed after my learning that my tumor had grown was, quite honestly, ugly. First, I cried. Trust me, it was not that pretty little sniffling cry you do when you realize late at night that you drank the last of the good wine and only have a leftover bottle of cupcake flavored vodka in the house to drown your sorrows in. (Side bar-how did that cupcake vodka get in my house in the first place? It just showed up one day and no one has yet to claim it. Possibly because they would be embarrassed to admit they drink it.) No friends, it was an all out ugly cry. The kind that actually leaves you gasping for breath. Breathe in. Breathe out. Repeat.
Here is the timeline of that night:
12:35 Attempt to sleep...cry
12:40 Say my nightly prayers..cry
12:45 Have a deep discussion with God, which included both an abundance of questions and a fair amount desperate bargaining ...cry
12:58 Realize God is not answering in a timely fashion, go downstairs...cry
1:05 Search the fridge for something that will make me feel better...cry
1:10 Begin texting Thea in Holland (because of the time difference, my middle of the night is her morning.) Thea is the friend I have had in my life the longest. We became pen pals 29 years ago and our friendship has been the one constant in my life. Over the years there have been many times when Thea was my anchor in the stormy sea of my life. She is simply the most beautiful soul I have ever met and I can’t imagine not having her.
1:26 Thea calls instead of texting. An emotional emergency requires more than a text.
2:26 I hang up with Thea and go directly to bed.
After I talked to Thea I realized just how much I had been holding my emotions in. I am, by nature, a people pleaser. Even when I have this horrible Cancer, I am still putting others first. I think a lot of moms do that. Thea was able to talk me off the emotional ledge I was on. The first few minutes of our call I couldn’t even speak. All I did was cry, long and hard. And that was ok. Thea was there with me in my silence, understanding, even more than I did, what I needed in that moment. My take away from the first time I had Cancer was that I realized it’s ok to ask for help. Sometimes by asking others for help, you are also helping them. Everyone wants to feel needed. It’s still not easy for me to ask for help, but I’m getting better at it.
After discovering the tumor growth, I went to see my new oncologist. I loved him! Huge sigh of relief. He is from the University of Chicago and was both knowledgeable and friendly. He also has a more aggressive and proactive style. He ordered a PET scan for me (a test that shows if there are Cancer cells anywhere in your body) and I will see him again September 12 to discuss my options. If there are no other tumors, his recommendation is to have surgery to remove that lobe of my lung that has the Cancer in it. Both of my previous oncologists said surgery wasn’t an option.
It can be confusing to see three doctors and get three different opinions. Often it feels like my treatment plan is just a crap shoot. Maybe this will work, or maybe this one is better. They don’t really know. That’s why they call it “practicing” medicine, because while you are in the doctor’s office waiting, they may be in their office searching on Web M.D. (My niece Maddie, a med student, shared the funniest video with me the other day. Check it out when you have time. It is sure to make you laugh. https://www.youtube.com/watch?v=EtAG3e3JLNI). My new oncologist, however, does not need to Google things about my treatment, so that’s a relief.
The surgery itself is very scary to me. Hearing things like “2 or 3 days in the ICU”, “5-7 days in the hospital”, “No driving for 4 weeks”, and “complete recovery is 3-4 months” frightens me, Still, as horrendous as it all sounds, I want the Cancer out of me and will do the surgery if it becomes possible. Now the waiting begins. The wait is agonizing. I try to keep busy so I won’t think about it all the time. I try to take it one day at a time, though sometimes it needs to be one hour at a time. Or maybe even one minute at a time. And that is ok. Until next time, Sue
Greetings friends. I can’t believe I am already writing the post that I had hoped I wouldn’t write for a few years….but here it is. The chemo drugs are not working and my tumor is growing. Breathe in. Breathe out. Repeat. Those words have been my reality the past 5 days. My “first line” of chemotherapy drugs failed miserably. And now, ready or not, I am forced to take a step in another direction. It doesn’t feel like a step though. It feels more like a giant leap from one trapeze to the next wearing a blindfold with no net to catch me if I fall.
What followed after my learning that my tumor had grown was, quite honestly, ugly. First, I cried. Trust me, it was not that pretty little sniffling cry you do when you realize late at night that you drank the last of the good wine and only have a leftover bottle of cupcake flavored vodka in the house to drown your sorrows in. (Side bar-how did that cupcake vodka get in my house in the first place? It just showed up one day and no one has yet to claim it. Possibly because they would be embarrassed to admit they drink it.) No friends, it was an all out ugly cry. The kind that actually leaves you gasping for breath. Breathe in. Breathe out. Repeat.
Here is the timeline of that night:
12:35 Attempt to sleep...cry
12:40 Say my nightly prayers..cry
12:45 Have a deep discussion with God, which included both an abundance of questions and a fair amount desperate bargaining ...cry
12:58 Realize God is not answering in a timely fashion, go downstairs...cry
1:05 Search the fridge for something that will make me feel better...cry
1:10 Begin texting Thea in Holland (because of the time difference, my middle of the night is her morning.) Thea is the friend I have had in my life the longest. We became pen pals 29 years ago and our friendship has been the one constant in my life. Over the years there have been many times when Thea was my anchor in the stormy sea of my life. She is simply the most beautiful soul I have ever met and I can’t imagine not having her.
1:26 Thea calls instead of texting. An emotional emergency requires more than a text.
2:26 I hang up with Thea and go directly to bed.
After I talked to Thea I realized just how much I had been holding my emotions in. I am, by nature, a people pleaser. Even when I have this horrible Cancer, I am still putting others first. I think a lot of moms do that. Thea was able to talk me off the emotional ledge I was on. The first few minutes of our call I couldn’t even speak. All I did was cry, long and hard. And that was ok. Thea was there with me in my silence, understanding, even more than I did, what I needed in that moment. My take away from the first time I had Cancer was that I realized it’s ok to ask for help. Sometimes by asking others for help, you are also helping them. Everyone wants to feel needed. It’s still not easy for me to ask for help, but I’m getting better at it.
After discovering the tumor growth, I went to see my new oncologist. I loved him! Huge sigh of relief. He is from the University of Chicago and was both knowledgeable and friendly. He also has a more aggressive and proactive style. He ordered a PET scan for me (a test that shows if there are Cancer cells anywhere in your body) and I will see him again September 12 to discuss my options. If there are no other tumors, his recommendation is to have surgery to remove that lobe of my lung that has the Cancer in it. Both of my previous oncologists said surgery wasn’t an option.
It can be confusing to see three doctors and get three different opinions. Often it feels like my treatment plan is just a crap shoot. Maybe this will work, or maybe this one is better. They don’t really know. That’s why they call it “practicing” medicine, because while you are in the doctor’s office waiting, they may be in their office searching on Web M.D. (My niece Maddie, a med student, shared the funniest video with me the other day. Check it out when you have time. It is sure to make you laugh. https://www.youtube.com/watch?v=EtAG3e3JLNI). My new oncologist, however, does not need to Google things about my treatment, so that’s a relief.
The surgery itself is very scary to me. Hearing things like “2 or 3 days in the ICU”, “5-7 days in the hospital”, “No driving for 4 weeks”, and “complete recovery is 3-4 months” frightens me, Still, as horrendous as it all sounds, I want the Cancer out of me and will do the surgery if it becomes possible. Now the waiting begins. The wait is agonizing. I try to keep busy so I won’t think about it all the time. I try to take it one day at a time, though sometimes it needs to be one hour at a time. Or maybe even one minute at a time. And that is ok. Until next time, Sue