Group Talk
I am so grateful for them. My group. We are a fluctuating group of women who all have the same kind of metastatic breast cancer. Sometimes there are 24 of us, sometimes 9, sometimes 18. It varies. We all have lives. Many of us still have jobs. Some have children. Our group meets once a week, during the day. We try to make it over the lunch hour for the women who work.
Our ages are all over the place, but the majority of us are over 50. We all have different stories. One woman had breast cancer at age 21, beat it and didn't have it come back for 30 years. Another had breast cancer at 39, beat it..only to have it return in 4 months. We are all different and there are so many different stories.
What we have in common are that we are all on borrowed time, we are all scared, but we are all going down fighting. It took me a long time to join this support group because I am very stubborn. For a very long time, I refused to believe that I needed support. Hey, I could do this. I had beaten breast cancer once and then went on to beat leukemia. So...okay...it was time to pick up that sword again. So, the fuck what?
Except this time was very different. This time, I would not be beating cancer. I would be delaying death. No one spoke to me about coming out on top. This time, my oncologist told me my expected time of life...22 months, give or take. She laid down the plan. There were several treatment options. We would start with one first, the one that seemed to work the best for the longest time. Once that stopped working, we would move on to the next one. And so on and so on. After we had exercised all my options, I would be sent home to die. There would be no bell for me to ring, no triumphant fist in the air. It took me a long time to come to terms with that, but once I did....I hit the wall hard. I went spiraling into a depression that I was not sure I could recover from. So, I began searching for a good group and found one. I am grateful every day.
We cry in my group sometimes, but we laugh a lot, too. We share side effects, discuss what works for someone, what doesn't. We are all different, so nothing is set in stone. We know this going in. We share experiences.
Some days we talk about our families, our spouses if we have one, our children. I have found that I am one of the very lucky ones. I have a spouse who goes to bat for me over and over and over again. Others are not so lucky. A good portion have spouses who try hard but end up failing simply because it is extraordinarily hard to be a care giver....especially for males. In many cases, the women in my group are the ones who have always done the caregiving and while their spouses are supportive, it can be difficult for them.
"He still expects me to make dinner. Are you fucking kidding me? Just the smell of food cooking makes me sick. But, if I leave the dinners up to him, he would order pizza every night for the kids."
"He blanched when I told him that I thought we needed a housecleaning service, told me that he would take over. How can I tell him that his toilet cleaning skills suck? Or that the cat litter has to be changed twice a week, not once a month? If I say these things, he acts like this tortured martyr, starts talking about how he works hard all day at work and feels like he puts in a second shift afterwards. Welcome to my world, babycakes!"
"He makes me dinner and then looks shocked that he is also expected to clean up afterwards. And believe me, this man has no conception of the idea of 'clean as you go.' Plus, he uses every pan in the house and spills sauce all over the counters."
It is comforting to talk side effects, just because sometimes you don't know if what you are experiencing is normal. The package insert warns you about everything from nausea to rashes, but doesn't mention that the fatigue you feel will literally knock you off of your feet. That sometimes you will feel so tired that getting up to go to the bathroom feels like a journey that is ten steps too far. We all experience some of the same and some unique side effects. In general, everyone is tired and nauseated. But, some of us get weird rashes ( "Does anyone else ever get weird rashes on the side of their necks?"), or jaw pain ("I could barely chew food!"), or odd pain (Sometimes the fingers on my left hand feel as if they've been slammed in a car door.") It helps to talk it out and know that yes, you aren't alone. Chemo fucking sucks. For everyone. I have yet to meet one person who claims that they feel good on it, have no side effects. We all seem to have the strange side effect of not being able to stand certain smells. For me, it is meat. For another, it is the smell of her son's after shave. Another made us all laugh by saying that she could suddenly not bear the smell of her mother in law's breath. ("To be honest, I don't know if that is psychological or not. I have never liked my mother in law one bit and maybe this is just me finding a way to avoid her.")
We talk a lot about funeral plans, about wanting to live, planning on living as long as possible, but knowing that we want our funerals to be on our own terms. One of my biggest worries was that T would be so grief stricken at my death that she would let my sisters plan my funeral and that I would end up with some big Catholic mass. One of the women in my group advised me to plan everything out, including songs and readings, so that T would simply have to implement my wishes. I did that and felt so relieved that it was palpable.
We talk about our treatments. A lot of our talk centers around how much we hate Ibrance commercials. Many of us are on this and if you watch the commercials, they show women who look so damn perky and happy. They attend their granddaughter's ballet recitals and then have plenty of energy left over for a sleepover, too! They go for weekend trips to the shore and go for hikes with their children and play board games and fry fish for dinner. They spend their mornings taking their toddler granddaughter to the park to play and then go to an afternoon baseball game with their friends. In reality, Ibrance pretty much knocks you on your ass. You might be able to go to your grandaughter's ballet recital, but good luck staying awake for it, let alone having her over for a sleepover. Nobody is going hiking on your weekend getaway. You are the one sitting in the Adirondack chair reading and sleeping while everyone else hikes and fishes. And having a fish fry? The smell of it cooking would send most of us to the bathroom to barf. Taking care of a toddler for an hour might be okay, but all morning? Forget that shit.
Some of us still work and this is a special kind of hell. A desk job is really all that we are capable of and doing anything that requires a lot of concentration is difficult. The women who do work do it mostly because it is their only source of health insurance. And try having cancer without health insurance. A month of Ibrance costs over ten thousand dollars. Plus, most of us get Faslodex and Xgeva shots as well. I know my good fortune to be on T's health insurance. And many of us are old enough to be on Medicare. But, even on Medicare, cancer is still very, very expensive. And even having good health insurance means that you still have to fight for some treatments to be paid for. Talking to others helps. I once spoke to a woman who was on private insurance. She had re-mortgaged her home to afford her prescriptions and her two children had taken on second jobs to help her out financially.
It helps to have support, others to talk about this with.
We do laugh a lot and that helps. There was the woman who had her next door neighbor drive her to her chemo treatments but stopped because she said she was looking better. I can't tell you how many times that I have spent the day puking only to have someone tell me how good I was looking that night. We talk about not buying clothes because we aren't sure if we'll be around long enough to get good wear out of them and then someone will sit up and say, "Fuck it. I DESERVED those shoes" and we will all laugh and applaud. Damn right we do.
We are honest. Sometimes we talk about not wanting to get too attached to each other because no one is staying here long. And then, we admit that some of our most honest, true blue moments have been in the circle of our group and how can that not count? How can you not fall in love with each other? These are women who know you better in two months than your family has known you in twenty years.
We talk about how everyone says we are so brave, so plucky, so strong and how that is only because they haven't seen us bawling into our pillows at 2 in the morning.
At the beginning of each group we stand in a circle and hold hands for a minute and then do it at the end of group. I used to find this slightly uncomfortable. I am not a hand holder. But, now? I crave it. I need it. I lean into it.
Those hands know me. I am so thankful for them.
Our ages are all over the place, but the majority of us are over 50. We all have different stories. One woman had breast cancer at age 21, beat it and didn't have it come back for 30 years. Another had breast cancer at 39, beat it..only to have it return in 4 months. We are all different and there are so many different stories.
What we have in common are that we are all on borrowed time, we are all scared, but we are all going down fighting. It took me a long time to join this support group because I am very stubborn. For a very long time, I refused to believe that I needed support. Hey, I could do this. I had beaten breast cancer once and then went on to beat leukemia. So...okay...it was time to pick up that sword again. So, the fuck what?
Except this time was very different. This time, I would not be beating cancer. I would be delaying death. No one spoke to me about coming out on top. This time, my oncologist told me my expected time of life...22 months, give or take. She laid down the plan. There were several treatment options. We would start with one first, the one that seemed to work the best for the longest time. Once that stopped working, we would move on to the next one. And so on and so on. After we had exercised all my options, I would be sent home to die. There would be no bell for me to ring, no triumphant fist in the air. It took me a long time to come to terms with that, but once I did....I hit the wall hard. I went spiraling into a depression that I was not sure I could recover from. So, I began searching for a good group and found one. I am grateful every day.
We cry in my group sometimes, but we laugh a lot, too. We share side effects, discuss what works for someone, what doesn't. We are all different, so nothing is set in stone. We know this going in. We share experiences.
Some days we talk about our families, our spouses if we have one, our children. I have found that I am one of the very lucky ones. I have a spouse who goes to bat for me over and over and over again. Others are not so lucky. A good portion have spouses who try hard but end up failing simply because it is extraordinarily hard to be a care giver....especially for males. In many cases, the women in my group are the ones who have always done the caregiving and while their spouses are supportive, it can be difficult for them.
"He still expects me to make dinner. Are you fucking kidding me? Just the smell of food cooking makes me sick. But, if I leave the dinners up to him, he would order pizza every night for the kids."
"He blanched when I told him that I thought we needed a housecleaning service, told me that he would take over. How can I tell him that his toilet cleaning skills suck? Or that the cat litter has to be changed twice a week, not once a month? If I say these things, he acts like this tortured martyr, starts talking about how he works hard all day at work and feels like he puts in a second shift afterwards. Welcome to my world, babycakes!"
"He makes me dinner and then looks shocked that he is also expected to clean up afterwards. And believe me, this man has no conception of the idea of 'clean as you go.' Plus, he uses every pan in the house and spills sauce all over the counters."
It is comforting to talk side effects, just because sometimes you don't know if what you are experiencing is normal. The package insert warns you about everything from nausea to rashes, but doesn't mention that the fatigue you feel will literally knock you off of your feet. That sometimes you will feel so tired that getting up to go to the bathroom feels like a journey that is ten steps too far. We all experience some of the same and some unique side effects. In general, everyone is tired and nauseated. But, some of us get weird rashes ( "Does anyone else ever get weird rashes on the side of their necks?"), or jaw pain ("I could barely chew food!"), or odd pain (Sometimes the fingers on my left hand feel as if they've been slammed in a car door.") It helps to talk it out and know that yes, you aren't alone. Chemo fucking sucks. For everyone. I have yet to meet one person who claims that they feel good on it, have no side effects. We all seem to have the strange side effect of not being able to stand certain smells. For me, it is meat. For another, it is the smell of her son's after shave. Another made us all laugh by saying that she could suddenly not bear the smell of her mother in law's breath. ("To be honest, I don't know if that is psychological or not. I have never liked my mother in law one bit and maybe this is just me finding a way to avoid her.")
We talk a lot about funeral plans, about wanting to live, planning on living as long as possible, but knowing that we want our funerals to be on our own terms. One of my biggest worries was that T would be so grief stricken at my death that she would let my sisters plan my funeral and that I would end up with some big Catholic mass. One of the women in my group advised me to plan everything out, including songs and readings, so that T would simply have to implement my wishes. I did that and felt so relieved that it was palpable.
We talk about our treatments. A lot of our talk centers around how much we hate Ibrance commercials. Many of us are on this and if you watch the commercials, they show women who look so damn perky and happy. They attend their granddaughter's ballet recitals and then have plenty of energy left over for a sleepover, too! They go for weekend trips to the shore and go for hikes with their children and play board games and fry fish for dinner. They spend their mornings taking their toddler granddaughter to the park to play and then go to an afternoon baseball game with their friends. In reality, Ibrance pretty much knocks you on your ass. You might be able to go to your grandaughter's ballet recital, but good luck staying awake for it, let alone having her over for a sleepover. Nobody is going hiking on your weekend getaway. You are the one sitting in the Adirondack chair reading and sleeping while everyone else hikes and fishes. And having a fish fry? The smell of it cooking would send most of us to the bathroom to barf. Taking care of a toddler for an hour might be okay, but all morning? Forget that shit.
Some of us still work and this is a special kind of hell. A desk job is really all that we are capable of and doing anything that requires a lot of concentration is difficult. The women who do work do it mostly because it is their only source of health insurance. And try having cancer without health insurance. A month of Ibrance costs over ten thousand dollars. Plus, most of us get Faslodex and Xgeva shots as well. I know my good fortune to be on T's health insurance. And many of us are old enough to be on Medicare. But, even on Medicare, cancer is still very, very expensive. And even having good health insurance means that you still have to fight for some treatments to be paid for. Talking to others helps. I once spoke to a woman who was on private insurance. She had re-mortgaged her home to afford her prescriptions and her two children had taken on second jobs to help her out financially.
It helps to have support, others to talk about this with.
We do laugh a lot and that helps. There was the woman who had her next door neighbor drive her to her chemo treatments but stopped because she said she was looking better. I can't tell you how many times that I have spent the day puking only to have someone tell me how good I was looking that night. We talk about not buying clothes because we aren't sure if we'll be around long enough to get good wear out of them and then someone will sit up and say, "Fuck it. I DESERVED those shoes" and we will all laugh and applaud. Damn right we do.
We are honest. Sometimes we talk about not wanting to get too attached to each other because no one is staying here long. And then, we admit that some of our most honest, true blue moments have been in the circle of our group and how can that not count? How can you not fall in love with each other? These are women who know you better in two months than your family has known you in twenty years.
We talk about how everyone says we are so brave, so plucky, so strong and how that is only because they haven't seen us bawling into our pillows at 2 in the morning.
At the beginning of each group we stand in a circle and hold hands for a minute and then do it at the end of group. I used to find this slightly uncomfortable. I am not a hand holder. But, now? I crave it. I need it. I lean into it.
Those hands know me. I am so thankful for them.
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