September 2014
02/09/14 08:05
Whatever occurs is neither the beginning nor the end. -- Pema Chödrön
After Treatment Ends, Where is the Finish Line?
What does the “after” in my title here even entail? With any luck, this part goes on and on. As I write, I am four years out (as we say in the biz) with no recurrence and my doctor pays me the back-handed compliment of a blurted out, “That wasn’t supposed to happen!” From this grateful position, as far as recovery goes, I can report that things -- none of them cancer -- continue to come and go. It takes a long time to stabilize on every front. But with no cancer in the picture, it is a privilege and a pleasure to work on every other little thing. One of the chemo nurses said to me after my last treatment that there are two things that really mattered in this. One was your general condition going into it and the other was whether you can leave this behind.
First things first. When they stop the chemo, they also stop all the goodies they were giving you through the same tube: anti-nauseas, anti-anxieties, anti-pain, etc. Only the poison stays in your system, wending its way out, for up to another 10 weeks. For me, that was the duration of summer after my last treatment on May 25th of that year. My stomach bothered me the whole summer, and if I’d kept my nausea meds I would have used them. But I’d handed them over for the cancer center to destroy, thinking I was done and hoping to seal that message with the universe by cleaning out all my sick room stuff and returning my bedroom to neutral on that front.
The anxiety, as I waited for that September’s PET scan, was if possible worse than the stomach suffering. I don’t think I ever solved that problem at the time. It was only solved by living through it and getting good news and getting to now. That’s not much use, as advice, to anyone who is in that phase. But once again, I mention the three acupuncture points on the ear called “shen men” for anxiety. They worked better than valium or anything else in pill form. I wish I could say dropping to a new jean size made up for it and brought me happiness, but it didn’t. You come out of cancer with a whole lot of perspective, on skinniness included.
My poop was yellow for a month or more, though the folks at the cancer center said it was not related to their doings. I made myself eat to be healthy, but everything continued to taste awful. One month after my last chemo session I had a birthday and on the trip to a restaurant in a silk scarf, for the occasion, I even ordered a cocktail. It was called a “lavender honey sidecar” and I couldn’t wait. And it tasted vile in my crazy mouth. Another evening I got a fudgesicle from the ice cream truck to try and recreate a childhood memory of happiness, and even this disappointed. Not everything was suboptimal. I loved the yoga class I was in, especially the walk there and back in new lime green huaraches and summer clothing. But I struggled to stay in a place of contentment. I felt traumatized at worst and just stunned at best, because what had just happened over the past several months? It felt like I’d been walking down the street when a big car with blacked out windows had pulled up and I’d been shoved into it and had my life kidnapped. While I dealt with this, September loomed before me with its promise/threat of a PET scan to see if all I had been through had worked.
The scan was clean as a whistle, and the week leading up to it was excruciating. I wondered how people can go through this for years of testing and so I asked one. He was 15 years out. He said it gets to be easier as each pass “becomes a data point.” At four years, I can say that I still hate it, but I can do it. There is another word in our biz: scanxiety. Now, the week before and the week after a checkup make me feel depressed – strange about the week after since the news is always good. But I suppose I resent living under this regime. Anyway, I can also report that the stretches between testing feel wonderful, free and very wide. It’s not at all like that first summer.
So things improved steadily, and I even got to keep the weight loss (for a time). And then, about two years out, I felt a slight depression. I’d decided to sign up with a personal trainer and began doing some machines, to tone up my new smaller self. And almost immediately I began to feel searing joint pain. It was everywhere, elbows and hips especially. My hips were so stiff and painful, I couldn’t even lie flat in a proper shavasana. So much for the new exercise schedule, but rolling it back didn’t help and the pain increased. At my next checkup, my favorite nurse told me that there was anecdotal evidence that the chemotherapy drug Taxol, which I’d had, seemed to cause arthritis in some patients. She mentioned the importance of moving to relieve it if it was arthritis, but you can see the Catch 22 in that. Moving hurt, and so I did less of it and that did nothing for my mood.
After about half a year in the doldrums, another nurse mentioned an exercise program just for cancer patients and put me in touch with the woman who’d developed it. I went, she drew up a program for me and I tried again. It was slow going, but the new program was good, I was determined, and somewhere along the way when I wasn’t noticing, all the joint pain completely resolved. Two years since the pain went away, I’ve had some slight joint pain recur in one elbow. So I’m still watching this. But I found hope in an item found from some internet searching on the subject:
https://www.inspire.com/groups/ovarian-cancer-national-alliance/discussion/stiffness-and-soreness-post-chemo/
By MarthaMcQ
Reply 137886
September 23, 2008 at 7:44 am
"I had the same experience of body pain, especially joint pain after chemo. In fact my right hip was so bad that my gyn onc [Maru note to civilians: this is short for gynecological oncologist] told me to get a hip replacement! I was shocked by his attitude. I chose to go to the acupuncturist, chiropractor and massage therapist and give my body time to recover from being poisoned for 18 months. It took just about an additional 18 months for my body to return to normal. Other than pain I had difficulty moving, say bending over to get the dog bowls to fill. Now I can move with ease and grace again. It's been 2 1/2 years since my last infusion.
I think it's difficult for oncologists to deal with the after effects of what they have done to keep us alive. And no matter what exercise or medication they may recommend, you still have a body that has been exposed to toxins and it takes time to rebuild and repair those cells. My chiropractor simply said it takes a long time to work the chemo out of the joints. So drink a lot of water to flush your system, improve your diet, move gently and smile! It gets better. I'm almost 59 and feel better than I did for years before diagnosis and my finger joints have straightened out on my vegan (no dairy) diet. The future is bright. Blessings, Martha"
Thank you, Martha!
Another weird phenomenon I experienced was a sparkling effect around the sides of my eyes. It came on strong during chemo and faded somewhat after. So, during the mop-up year following treatment I asked my regular eye doctor about it. He said that sparkling was actually a migraine, in my case without the headache or any pain at all. (I never had migraines before.) I asked him if this was typical of his patients who'd had chemo and he said none of his patients had ever told him if they'd had chemo. What the what? Anyway, he said it was very likely caused by the stress -- both physical and psychological -- of my cancer year. Now I see a little hint of it on quite rare occasions and just for a moment. My vision wasn't affected in any other way.
Next, ever heard of steatosis? Its cruder name is fatty liver, and studies show that up to 85% of chemo patients develop it. Traditionally, alcoholics got it from their drinking, and lately people are getting it from obesity and sugar consumption. I've never been metabolically blessed, but -- or maybe therefore -- I don't abuse alcohol or sugar. When I had a liver panel done just before treatment, my numbers were fine. After chemo, they were elevated to “damage” levels. Once you have the condition you begin to get fatter and fatter in a kind of self-perpetuating continuum. So, that may also explain why sometime in the second or third year out, that’s what happened to me. Can you imagine? After being so hungry yet repulsed by food during the cancer treatment when I had to make myself eat just to stay alive, dropping 30 lbs. in the process, I now gained enough weight that when my husband’s stupid uncle saw me he simply cried out, “FAT!!” He even spread his arms out in a gesture to illustrate the notion of bigness as if I, and the room full of people also standing there, hadn't got it. He needn’t have worried because, being a deaf old coot, he shouts everything. There are people to whom I’d love to say, “If I had to choose between your personality and my waistline, I’d keep what I got.”
I know. You’re right. I shouldn’t make fun of him being old or deaf. Because that’s shaming him for things that are not his fault, and that wouldn’t be fair. Or something.
Anyway. My naturopath says steatosis is reversible and we are working on it. (My acupuncturist says she always believes that everything is reversible.) I have been prepared to understand it could take years. Hey, I'm happy to have years. But, I resent my lionhearted recovery from stage 4 cancer being treated by the uneducated public like one of those celebrity-body-after-baby articles. (Betcha post partum mothers could do without those articles, too.) Under the latest chemo standards of care, the long-term survivors are still just a decade or two long-term at the very outside. The files about how to do any of this and what to expect are still incomplete. All the people whose numbers are yet to come up, even the skinny ones, can thank the likes of me in advance. Because I’m doing the best I can, and I’m part of the record they’re going to have for reference.
So here is how my recovery goes at four and a half years out. Along with my three-ring binder, I’ve kept a journal on my laptop since the day I was diagnosed. I do my walking, my swimming, some yoga and even some Zumba. I keep my vegetable count up and keep simple carbs way down while I work on this fatty liver thing. I drink hot water with lemon squeezed into it first thing every morning, and I don’t always want to. I drink liver cleanse tea heavy on the dandelion with a hit of milk thistle and there are a couple of other things we're trying in capsule and drop forms. I take some vitamin D supplement and I still take my mushrooms every day. I see the acupuncturist, the naturopath and the hemorrhoid guy regularly. I see my oncologist twice a year and in several months I look forward to graduating to once a year. I buy myself clothes more freely than I ever have in my life, and I don’t care if something comes from Lane Bryant. (I'm downright happy if it comes from Bryn Walker.) In the four years since coming out of this, I have travelled to London and Tokyo, made one trip to Boston and many, many to the exquisite Oregon coast. I’ve learned to throw pots on a wheel. I go to every single play or concert that appeals to me (and I’m telling you, do anything it takes to see “The Book of Mormon”). I have grown my hair long, cut it short, and dyed part of it pink. I tutor kids in reading during the school year and play with friends all summer. I’ve been writing this web site.
The boilerplate about when you can announce you are cured of a cancer is if you reach the five-year mark afterward. Is that five years after your diagnosis or five years after your last chemo? It doesn’t matter, because that five-year bromide was only ever intended for some cancers, not all of them. And anyway, in fact you can get a recurrence any time. You can also get another completely different cancer any time. Statistics are slippery business, because for your own purposes the only two statistics are 100% or zero; a thing happens to you or it doesn’t. So, where is the finish line? Well, I guess in the same way that you have to make your own umbrella, you have to draw your own finish line. But I have made it clear that I don’t believe in the lines drawn around any category and that includes any line between healing and done. I hear that wellness is not a destination, it’s a practice. ###
Further reading:
Seven Things I Wish I'd Known Earlier About Cancer Survivorship
By Jessie Gruman
http://www.cfah.org/file/Gruman_CancerSurvivorship.pdf
Lost in Transition After Cancer
By Suleika Jaouad
http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer
At Too Many Hospitals, a Revolving Door
NYT July 23, 2013
http://newoldage.blogs.nytimes.com/2013/07/23/at-too-many-hospitals-a-revolving-door/
Life, Interrupted: Am I a Cancer Survivor?
By Suleika Jaouad
http://well.blogs.nytimes.com/2012/07/12/what-does-it-mean-to-be-a-cancer-survivor/
Reprieve
By Tim Kreider
http://opinionator.blogs.nytimes.com/2009/06/02/reprieve/
Living with Cancer: Good News Soup
By Susan Gubar
http://well.blogs.nytimes.com/2013/05/09/living-with-cancer-good-news-soup/?src=rechp
What do we mean when we say a person's cancer has been cured?
By Edd James
Associate Professor in Cancer Immunology
University of Southampton
December 15, 2015
https://theconversation.com/what-do-we-mean-when-we-say-a-persons-cancer-has-been-cured-52022
After Treatment Ends, Where is the Finish Line?
What does the “after” in my title here even entail? With any luck, this part goes on and on. As I write, I am four years out (as we say in the biz) with no recurrence and my doctor pays me the back-handed compliment of a blurted out, “That wasn’t supposed to happen!” From this grateful position, as far as recovery goes, I can report that things -- none of them cancer -- continue to come and go. It takes a long time to stabilize on every front. But with no cancer in the picture, it is a privilege and a pleasure to work on every other little thing. One of the chemo nurses said to me after my last treatment that there are two things that really mattered in this. One was your general condition going into it and the other was whether you can leave this behind.
First things first. When they stop the chemo, they also stop all the goodies they were giving you through the same tube: anti-nauseas, anti-anxieties, anti-pain, etc. Only the poison stays in your system, wending its way out, for up to another 10 weeks. For me, that was the duration of summer after my last treatment on May 25th of that year. My stomach bothered me the whole summer, and if I’d kept my nausea meds I would have used them. But I’d handed them over for the cancer center to destroy, thinking I was done and hoping to seal that message with the universe by cleaning out all my sick room stuff and returning my bedroom to neutral on that front.
The anxiety, as I waited for that September’s PET scan, was if possible worse than the stomach suffering. I don’t think I ever solved that problem at the time. It was only solved by living through it and getting good news and getting to now. That’s not much use, as advice, to anyone who is in that phase. But once again, I mention the three acupuncture points on the ear called “shen men” for anxiety. They worked better than valium or anything else in pill form. I wish I could say dropping to a new jean size made up for it and brought me happiness, but it didn’t. You come out of cancer with a whole lot of perspective, on skinniness included.
My poop was yellow for a month or more, though the folks at the cancer center said it was not related to their doings. I made myself eat to be healthy, but everything continued to taste awful. One month after my last chemo session I had a birthday and on the trip to a restaurant in a silk scarf, for the occasion, I even ordered a cocktail. It was called a “lavender honey sidecar” and I couldn’t wait. And it tasted vile in my crazy mouth. Another evening I got a fudgesicle from the ice cream truck to try and recreate a childhood memory of happiness, and even this disappointed. Not everything was suboptimal. I loved the yoga class I was in, especially the walk there and back in new lime green huaraches and summer clothing. But I struggled to stay in a place of contentment. I felt traumatized at worst and just stunned at best, because what had just happened over the past several months? It felt like I’d been walking down the street when a big car with blacked out windows had pulled up and I’d been shoved into it and had my life kidnapped. While I dealt with this, September loomed before me with its promise/threat of a PET scan to see if all I had been through had worked.
The scan was clean as a whistle, and the week leading up to it was excruciating. I wondered how people can go through this for years of testing and so I asked one. He was 15 years out. He said it gets to be easier as each pass “becomes a data point.” At four years, I can say that I still hate it, but I can do it. There is another word in our biz: scanxiety. Now, the week before and the week after a checkup make me feel depressed – strange about the week after since the news is always good. But I suppose I resent living under this regime. Anyway, I can also report that the stretches between testing feel wonderful, free and very wide. It’s not at all like that first summer.
So things improved steadily, and I even got to keep the weight loss (for a time). And then, about two years out, I felt a slight depression. I’d decided to sign up with a personal trainer and began doing some machines, to tone up my new smaller self. And almost immediately I began to feel searing joint pain. It was everywhere, elbows and hips especially. My hips were so stiff and painful, I couldn’t even lie flat in a proper shavasana. So much for the new exercise schedule, but rolling it back didn’t help and the pain increased. At my next checkup, my favorite nurse told me that there was anecdotal evidence that the chemotherapy drug Taxol, which I’d had, seemed to cause arthritis in some patients. She mentioned the importance of moving to relieve it if it was arthritis, but you can see the Catch 22 in that. Moving hurt, and so I did less of it and that did nothing for my mood.
After about half a year in the doldrums, another nurse mentioned an exercise program just for cancer patients and put me in touch with the woman who’d developed it. I went, she drew up a program for me and I tried again. It was slow going, but the new program was good, I was determined, and somewhere along the way when I wasn’t noticing, all the joint pain completely resolved. Two years since the pain went away, I’ve had some slight joint pain recur in one elbow. So I’m still watching this. But I found hope in an item found from some internet searching on the subject:
https://www.inspire.com/groups/ovarian-cancer-national-alliance/discussion/stiffness-and-soreness-post-chemo/
By MarthaMcQ
Reply 137886
September 23, 2008 at 7:44 am
"I had the same experience of body pain, especially joint pain after chemo. In fact my right hip was so bad that my gyn onc [Maru note to civilians: this is short for gynecological oncologist] told me to get a hip replacement! I was shocked by his attitude. I chose to go to the acupuncturist, chiropractor and massage therapist and give my body time to recover from being poisoned for 18 months. It took just about an additional 18 months for my body to return to normal. Other than pain I had difficulty moving, say bending over to get the dog bowls to fill. Now I can move with ease and grace again. It's been 2 1/2 years since my last infusion.
I think it's difficult for oncologists to deal with the after effects of what they have done to keep us alive. And no matter what exercise or medication they may recommend, you still have a body that has been exposed to toxins and it takes time to rebuild and repair those cells. My chiropractor simply said it takes a long time to work the chemo out of the joints. So drink a lot of water to flush your system, improve your diet, move gently and smile! It gets better. I'm almost 59 and feel better than I did for years before diagnosis and my finger joints have straightened out on my vegan (no dairy) diet. The future is bright. Blessings, Martha"
Thank you, Martha!
Another weird phenomenon I experienced was a sparkling effect around the sides of my eyes. It came on strong during chemo and faded somewhat after. So, during the mop-up year following treatment I asked my regular eye doctor about it. He said that sparkling was actually a migraine, in my case without the headache or any pain at all. (I never had migraines before.) I asked him if this was typical of his patients who'd had chemo and he said none of his patients had ever told him if they'd had chemo. What the what? Anyway, he said it was very likely caused by the stress -- both physical and psychological -- of my cancer year. Now I see a little hint of it on quite rare occasions and just for a moment. My vision wasn't affected in any other way.
Next, ever heard of steatosis? Its cruder name is fatty liver, and studies show that up to 85% of chemo patients develop it. Traditionally, alcoholics got it from their drinking, and lately people are getting it from obesity and sugar consumption. I've never been metabolically blessed, but -- or maybe therefore -- I don't abuse alcohol or sugar. When I had a liver panel done just before treatment, my numbers were fine. After chemo, they were elevated to “damage” levels. Once you have the condition you begin to get fatter and fatter in a kind of self-perpetuating continuum. So, that may also explain why sometime in the second or third year out, that’s what happened to me. Can you imagine? After being so hungry yet repulsed by food during the cancer treatment when I had to make myself eat just to stay alive, dropping 30 lbs. in the process, I now gained enough weight that when my husband’s stupid uncle saw me he simply cried out, “FAT!!” He even spread his arms out in a gesture to illustrate the notion of bigness as if I, and the room full of people also standing there, hadn't got it. He needn’t have worried because, being a deaf old coot, he shouts everything. There are people to whom I’d love to say, “If I had to choose between your personality and my waistline, I’d keep what I got.”
I know. You’re right. I shouldn’t make fun of him being old or deaf. Because that’s shaming him for things that are not his fault, and that wouldn’t be fair. Or something.
Anyway. My naturopath says steatosis is reversible and we are working on it. (My acupuncturist says she always believes that everything is reversible.) I have been prepared to understand it could take years. Hey, I'm happy to have years. But, I resent my lionhearted recovery from stage 4 cancer being treated by the uneducated public like one of those celebrity-body-after-baby articles. (Betcha post partum mothers could do without those articles, too.) Under the latest chemo standards of care, the long-term survivors are still just a decade or two long-term at the very outside. The files about how to do any of this and what to expect are still incomplete. All the people whose numbers are yet to come up, even the skinny ones, can thank the likes of me in advance. Because I’m doing the best I can, and I’m part of the record they’re going to have for reference.
So here is how my recovery goes at four and a half years out. Along with my three-ring binder, I’ve kept a journal on my laptop since the day I was diagnosed. I do my walking, my swimming, some yoga and even some Zumba. I keep my vegetable count up and keep simple carbs way down while I work on this fatty liver thing. I drink hot water with lemon squeezed into it first thing every morning, and I don’t always want to. I drink liver cleanse tea heavy on the dandelion with a hit of milk thistle and there are a couple of other things we're trying in capsule and drop forms. I take some vitamin D supplement and I still take my mushrooms every day. I see the acupuncturist, the naturopath and the hemorrhoid guy regularly. I see my oncologist twice a year and in several months I look forward to graduating to once a year. I buy myself clothes more freely than I ever have in my life, and I don’t care if something comes from Lane Bryant. (I'm downright happy if it comes from Bryn Walker.) In the four years since coming out of this, I have travelled to London and Tokyo, made one trip to Boston and many, many to the exquisite Oregon coast. I’ve learned to throw pots on a wheel. I go to every single play or concert that appeals to me (and I’m telling you, do anything it takes to see “The Book of Mormon”). I have grown my hair long, cut it short, and dyed part of it pink. I tutor kids in reading during the school year and play with friends all summer. I’ve been writing this web site.
The boilerplate about when you can announce you are cured of a cancer is if you reach the five-year mark afterward. Is that five years after your diagnosis or five years after your last chemo? It doesn’t matter, because that five-year bromide was only ever intended for some cancers, not all of them. And anyway, in fact you can get a recurrence any time. You can also get another completely different cancer any time. Statistics are slippery business, because for your own purposes the only two statistics are 100% or zero; a thing happens to you or it doesn’t. So, where is the finish line? Well, I guess in the same way that you have to make your own umbrella, you have to draw your own finish line. But I have made it clear that I don’t believe in the lines drawn around any category and that includes any line between healing and done. I hear that wellness is not a destination, it’s a practice. ###
Further reading:
Seven Things I Wish I'd Known Earlier About Cancer Survivorship
By Jessie Gruman
http://www.cfah.org/file/Gruman_CancerSurvivorship.pdf
Lost in Transition After Cancer
By Suleika Jaouad
http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer
At Too Many Hospitals, a Revolving Door
NYT July 23, 2013
http://newoldage.blogs.nytimes.com/2013/07/23/at-too-many-hospitals-a-revolving-door/
Life, Interrupted: Am I a Cancer Survivor?
By Suleika Jaouad
http://well.blogs.nytimes.com/2012/07/12/what-does-it-mean-to-be-a-cancer-survivor/
Reprieve
By Tim Kreider
http://opinionator.blogs.nytimes.com/2009/06/02/reprieve/
Living with Cancer: Good News Soup
By Susan Gubar
http://well.blogs.nytimes.com/2013/05/09/living-with-cancer-good-news-soup/?src=rechp
What do we mean when we say a person's cancer has been cured?
By Edd James
Associate Professor in Cancer Immunology
University of Southampton
December 15, 2015
https://theconversation.com/what-do-we-mean-when-we-say-a-persons-cancer-has-been-cured-52022
Photo credit my own.