Dancing on a knife's edge.
I've never been more aware that I am being treated for cancer than I have been in the past month. Which is odd, given that I underwent major abdominal surgery to have 24cm of my colon and 25 of my (insert unknown number between 300 and 700 here) lymph nodes removed because they might harbour more of the adenocarcinoma that was discovered during my colonoscopy just eight weeks earlier. After all, going through that surgery should reasonably have been the most significant ordeal I had gone through in my fifty-plus years of life, and at the time both my surgeon and I believed that the surgery was all that I would need.
But then there was that one lymph node...
Okay then. My surgeon and I had discussed the possibility of needing oral chemotherapy for six months after surgery if anything was uncovered during postoperative pathology studies. One of my lymph nodes was positive for the same type of adenocarcinoma that had been uncovered during my colonoscopy, triggering my referral to my local branch of the cancer treatment agency in my province. I've already written about the journey that I've been on since in a lot of detail in my other posts, but to bring you up to speed if you've missed it I underwent five weeks (25 days) of combined oral chemotherapy and radiation, then because I had tolerated the oral chemotherapy so well, I was switched to a more aggressive form of chemotherapy involving a vitamin (folinic acid) that helps a false nucleotide (5-fluorouracil) work better to block protein synthesis in cancer cells as well as a toxic heavy metal-containing chemical (oxaliplatin) to enhance the cancer-killing effects of the regimen.
There were no known sources of adenocarcinoma left in my body after surgery. Note that I said known sources; the fact that I had one lymph node that had been invaded by my cancer and that the primary tumour had two large blood vessels running through it gave the cancer two open doors into my bloodstream, and the fact is that tumours can't be detected until they are relatively large - 3 mm to 5 mm in diameter depending on the technology and skill of the interpreting radiologist. That is already a LOT of cells (a 5 mm tumour has approximately 10 million cells) and given that the two tumours I had were twice that diameter (and therefore had about 100 million cells each) the risk that there were distant tumours starting somewhere else in my body was not worth taking in my opinion. I decided to go along with the more aggressive chemotherapy in order to give me the best chance at a normal lifespan. And after the first cycle I felt completely fine, experiencing only the entirely predictable adverse effects (cold dysesthesia and other tingling from the oxaliplatin and some tiredness overall as well as a little bit of chemo brain) from my chemo.
Then I had my second cycle of chemo.
In The Ironic Lilypad I described what happened there; neutropenia triggered a one-week delay in my treatment as well as a permanent reduction in my oxaliplatin dose. But I don't think I actually described what happened, at least from my own selfish personal perspective.
I felt sick for the first time since I received my diagnosis.
All along, you see, I haven't felt sick. I've had a diagnosis, not a disease. Even after my surgery I have experienced no pain and my cancer was detected during routine screening so I had no symptoms of rectal cancer when the primary tumour was removed. Radiation made me a little tired but I didn't feel sick, and the adverse effects I felt after my first course of intravenous chemotherapy was mild and predictable. But when I was neutropenic I actually felt sick; I had heartburn all the time, my tongue was coated in a white film, everything tasted metallic and yucky, and I had no energy. I didn't want to feel that way once more let alone six times more to complete my therapy. Fortunately for me, I wouldn't have to; the protocol that guides my therapy included a dose reduction of oxaliplatin in response to the severe adverse effects that I was experiencing. I received my lower dose of oxaliplatin on my third course of chemo just over a week ago, and for the first few days everything was great.
For the first few days. Then I started to feel even sicker than I did after my second cycle of chemo.
The adverse effects from the oxaliplatin - neurotoxicity like tingling and weakness and cold dysesthesias - were either absent or at least significantly milder than they had been after my second cycle of chemo. I keep a log of adverse effects and within 18 hours of my third course of chemo I stopped logging anything because the things I was experiencing were so mild that they were trivial. I was excited - delirious, actually - because I felt so much better for the first 72 hours. Then I started to feel sick again, and this time it got much, much worse.
There are a whole host of adverse effects of fluorouracil but the big ones - the ones that happen more than one time in ten - are heartburn, loss of appetite, stomatitis (irritation or breakdown of mucous membranes in the mouth), and diarrhea. I experienced all of those to a moderate or severe level. The most troubling of my symptoms (spoiler alert; I will be discussing bowel habits here so change to another site if you're squeamish about such things) was frequent, painful bowel movements. My normal bowel habit is to have one to two soft but formed BMs per day. For nearly five days, I was having twelve to twenty bowel movements that ranged from a 1 to a 7 on the Bristol Stool Scale and could be anywhere in volume from the smallest trace of stool to a very, very large amount. I would often pass stool, then have to return within five minutes because I had to pass more. One hour I passed stool six times. I was woken up every night, sometimes three or four times, to pass stool. And after the first few bowel movements, each one became painful, eventually to the point that I was literally in tears and could barely think of anything but the pain I was in as I pooped.
For the first time since my diagnosis, I didn't want to go on.
Like most of us, I've been pooping my entire life. It's something we don't like talking about (not even me, although that might be hard to believe) and we barely think about but we all do. I never imagined that the simple act of pooping would make me so depressed, so frustrated and all-consumed with avoiding the pain that came with it that I wanted to give up.
Then there was the heartburn. I rarely get indigestion and when I do it is relatively mild. I was treated for an active peptic ulcer fifteen years ago and that discomfort was probably a five on a ten-point scale, while the heartburn I was experiencing this time was a solid nine and working hard to get the perfect score of ten. I could knock the pain back with ranitidine, but if I forgot to take it I felt as if there was white-hot oil boiling just under the bottom of my ribcage. At first I thought it was due to the dexamethasone that I have to take as an antinauseant, but realistically it is probably caused by multiple things including the fluorouracil.
On my last cycle I noticed something strange with my tongue three days after chemo. It was swollen and softer than usual, almost like it was waterlogged or something. When I stuck my tongue out, there were indentations all around the edge of my tongue from my teeth. This recurred this cycle, but now it was accompanied by a general feeling of fragility to my lips and the inside of my cheeks. And it is now nine days out from my chemo and my tongue is still fragile and swollen just as bad as it was for the twenty-four hours I noticed it after my second cycle. I'm likely right on the verge of getting oral mucositis or stomatitis although it is not nearly as severe as the changes in bowel habits that I experienced.
Fluorouracil can cause neutropenia too, but I can't feel or see that. I just have to wait until my bloodwork is drawn this Thursday and see where my neutrophil count sits. If it's low again, I will have to be delayed another week and have an even lower dose of my chemotherapy. But that's probably academic anyway - aside from the delay - because according to my treatment protocol I should have my dose of fluorouracil reduced because of my grade 3 to 4 diarrhea. (My mucositis is at most a grade 2 and as such would not result in a dose change on its own).
I guess it makes sense that I felt sick (NOTE: I don't feel sick any more as I write this). I mean, I am pumping poison into my body every few weeks in an effort to kill off possible unseen tumours that could measure in the millions of cells. But it's the degree to which I felt sick that was bothering me.
I am by nature an optimistic person, but I am also by nature a fairly conservative one. I've never felt comfortable working in environments where pay was based on commissions even though I objectively performed well there - I just felt uncomfortable with the degree of uncertainty. I have virtually no entrepreneurial drive, preferring to embrace the stability of a known job for the allure of rewards if I took more risks. And right now, I feel like I am taking a big risk by undergoing chemotherapy.
I'm not really happy dancing on the knife's edge, you see.
The goal of chemotherapy is to kill the cancerous cells while leaving the rest of the patient's cells alive. Unfortunately, there are very few differences between cancerous and non-cancerous cells in our body aside from the uninhibited growth of cancerous cells so it's hard to find an exploit that will kill tumours and leave healthy cells alive. If the dose of chemotherapy is so low that there is no effect on healthy cells, the risk is that the cancerous cells will survive and then all of the pain of undergoing chemotherapy is wasted. If the dose is too high, the patient may not survive the therapy because they sustain too much damage to their healthy cells in an attempt to kill off the cancerous ones. It's not an exact science, and every patient is their own unique environment; that's why these protocols have dose adjustments included within them.
As a medical professional I understand that dancing on a knife's edge is a necessity when trying to treat cancer. As a person, I hate being put in that position. But that is where I am.
I could choose not to be here I suppose. I could tell my oncologist that I've had enough and I won't continue with chemo. They would likely try to talk me out of that choice in the firm belief that dancing on the knife's edge as they try to kill my cancer and not kill me is ultimately worth it. But as frustrated as I was a few days ago, I am nowhere near ready to throw in the metaphorical towel. I still know - or at least, believe - that completing my chemotherapy is the right thing to do because it offers me the greatest opportunity for a normal life span. So instead I will tell my oncologist the truth of everything that I have experienced so that they will reduce my dose and I will hope that the adverse effects are a lot more tolerable next week when I go through my fourth of eight cycles of chemotherapy.
So cue the next song, and I will continue to dance on the knife's edge. I'm almost halfway done the dance, and I still have my army of angels looking after me...
But then there was that one lymph node...
Okay then. My surgeon and I had discussed the possibility of needing oral chemotherapy for six months after surgery if anything was uncovered during postoperative pathology studies. One of my lymph nodes was positive for the same type of adenocarcinoma that had been uncovered during my colonoscopy, triggering my referral to my local branch of the cancer treatment agency in my province. I've already written about the journey that I've been on since in a lot of detail in my other posts, but to bring you up to speed if you've missed it I underwent five weeks (25 days) of combined oral chemotherapy and radiation, then because I had tolerated the oral chemotherapy so well, I was switched to a more aggressive form of chemotherapy involving a vitamin (folinic acid) that helps a false nucleotide (5-fluorouracil) work better to block protein synthesis in cancer cells as well as a toxic heavy metal-containing chemical (oxaliplatin) to enhance the cancer-killing effects of the regimen.
There were no known sources of adenocarcinoma left in my body after surgery. Note that I said known sources; the fact that I had one lymph node that had been invaded by my cancer and that the primary tumour had two large blood vessels running through it gave the cancer two open doors into my bloodstream, and the fact is that tumours can't be detected until they are relatively large - 3 mm to 5 mm in diameter depending on the technology and skill of the interpreting radiologist. That is already a LOT of cells (a 5 mm tumour has approximately 10 million cells) and given that the two tumours I had were twice that diameter (and therefore had about 100 million cells each) the risk that there were distant tumours starting somewhere else in my body was not worth taking in my opinion. I decided to go along with the more aggressive chemotherapy in order to give me the best chance at a normal lifespan. And after the first cycle I felt completely fine, experiencing only the entirely predictable adverse effects (cold dysesthesia and other tingling from the oxaliplatin and some tiredness overall as well as a little bit of chemo brain) from my chemo.
Then I had my second cycle of chemo.
In The Ironic Lilypad I described what happened there; neutropenia triggered a one-week delay in my treatment as well as a permanent reduction in my oxaliplatin dose. But I don't think I actually described what happened, at least from my own selfish personal perspective.
I felt sick for the first time since I received my diagnosis.
All along, you see, I haven't felt sick. I've had a diagnosis, not a disease. Even after my surgery I have experienced no pain and my cancer was detected during routine screening so I had no symptoms of rectal cancer when the primary tumour was removed. Radiation made me a little tired but I didn't feel sick, and the adverse effects I felt after my first course of intravenous chemotherapy was mild and predictable. But when I was neutropenic I actually felt sick; I had heartburn all the time, my tongue was coated in a white film, everything tasted metallic and yucky, and I had no energy. I didn't want to feel that way once more let alone six times more to complete my therapy. Fortunately for me, I wouldn't have to; the protocol that guides my therapy included a dose reduction of oxaliplatin in response to the severe adverse effects that I was experiencing. I received my lower dose of oxaliplatin on my third course of chemo just over a week ago, and for the first few days everything was great.
For the first few days. Then I started to feel even sicker than I did after my second cycle of chemo.
The adverse effects from the oxaliplatin - neurotoxicity like tingling and weakness and cold dysesthesias - were either absent or at least significantly milder than they had been after my second cycle of chemo. I keep a log of adverse effects and within 18 hours of my third course of chemo I stopped logging anything because the things I was experiencing were so mild that they were trivial. I was excited - delirious, actually - because I felt so much better for the first 72 hours. Then I started to feel sick again, and this time it got much, much worse.
There are a whole host of adverse effects of fluorouracil but the big ones - the ones that happen more than one time in ten - are heartburn, loss of appetite, stomatitis (irritation or breakdown of mucous membranes in the mouth), and diarrhea. I experienced all of those to a moderate or severe level. The most troubling of my symptoms (spoiler alert; I will be discussing bowel habits here so change to another site if you're squeamish about such things) was frequent, painful bowel movements. My normal bowel habit is to have one to two soft but formed BMs per day. For nearly five days, I was having twelve to twenty bowel movements that ranged from a 1 to a 7 on the Bristol Stool Scale and could be anywhere in volume from the smallest trace of stool to a very, very large amount. I would often pass stool, then have to return within five minutes because I had to pass more. One hour I passed stool six times. I was woken up every night, sometimes three or four times, to pass stool. And after the first few bowel movements, each one became painful, eventually to the point that I was literally in tears and could barely think of anything but the pain I was in as I pooped.
For the first time since my diagnosis, I didn't want to go on.
Like most of us, I've been pooping my entire life. It's something we don't like talking about (not even me, although that might be hard to believe) and we barely think about but we all do. I never imagined that the simple act of pooping would make me so depressed, so frustrated and all-consumed with avoiding the pain that came with it that I wanted to give up.
Then there was the heartburn. I rarely get indigestion and when I do it is relatively mild. I was treated for an active peptic ulcer fifteen years ago and that discomfort was probably a five on a ten-point scale, while the heartburn I was experiencing this time was a solid nine and working hard to get the perfect score of ten. I could knock the pain back with ranitidine, but if I forgot to take it I felt as if there was white-hot oil boiling just under the bottom of my ribcage. At first I thought it was due to the dexamethasone that I have to take as an antinauseant, but realistically it is probably caused by multiple things including the fluorouracil.
On my last cycle I noticed something strange with my tongue three days after chemo. It was swollen and softer than usual, almost like it was waterlogged or something. When I stuck my tongue out, there were indentations all around the edge of my tongue from my teeth. This recurred this cycle, but now it was accompanied by a general feeling of fragility to my lips and the inside of my cheeks. And it is now nine days out from my chemo and my tongue is still fragile and swollen just as bad as it was for the twenty-four hours I noticed it after my second cycle. I'm likely right on the verge of getting oral mucositis or stomatitis although it is not nearly as severe as the changes in bowel habits that I experienced.
Fluorouracil can cause neutropenia too, but I can't feel or see that. I just have to wait until my bloodwork is drawn this Thursday and see where my neutrophil count sits. If it's low again, I will have to be delayed another week and have an even lower dose of my chemotherapy. But that's probably academic anyway - aside from the delay - because according to my treatment protocol I should have my dose of fluorouracil reduced because of my grade 3 to 4 diarrhea. (My mucositis is at most a grade 2 and as such would not result in a dose change on its own).
I guess it makes sense that I felt sick (NOTE: I don't feel sick any more as I write this). I mean, I am pumping poison into my body every few weeks in an effort to kill off possible unseen tumours that could measure in the millions of cells. But it's the degree to which I felt sick that was bothering me.
I am by nature an optimistic person, but I am also by nature a fairly conservative one. I've never felt comfortable working in environments where pay was based on commissions even though I objectively performed well there - I just felt uncomfortable with the degree of uncertainty. I have virtually no entrepreneurial drive, preferring to embrace the stability of a known job for the allure of rewards if I took more risks. And right now, I feel like I am taking a big risk by undergoing chemotherapy.
I'm not really happy dancing on the knife's edge, you see.
The goal of chemotherapy is to kill the cancerous cells while leaving the rest of the patient's cells alive. Unfortunately, there are very few differences between cancerous and non-cancerous cells in our body aside from the uninhibited growth of cancerous cells so it's hard to find an exploit that will kill tumours and leave healthy cells alive. If the dose of chemotherapy is so low that there is no effect on healthy cells, the risk is that the cancerous cells will survive and then all of the pain of undergoing chemotherapy is wasted. If the dose is too high, the patient may not survive the therapy because they sustain too much damage to their healthy cells in an attempt to kill off the cancerous ones. It's not an exact science, and every patient is their own unique environment; that's why these protocols have dose adjustments included within them.
As a medical professional I understand that dancing on a knife's edge is a necessity when trying to treat cancer. As a person, I hate being put in that position. But that is where I am.
I could choose not to be here I suppose. I could tell my oncologist that I've had enough and I won't continue with chemo. They would likely try to talk me out of that choice in the firm belief that dancing on the knife's edge as they try to kill my cancer and not kill me is ultimately worth it. But as frustrated as I was a few days ago, I am nowhere near ready to throw in the metaphorical towel. I still know - or at least, believe - that completing my chemotherapy is the right thing to do because it offers me the greatest opportunity for a normal life span. So instead I will tell my oncologist the truth of everything that I have experienced so that they will reduce my dose and I will hope that the adverse effects are a lot more tolerable next week when I go through my fourth of eight cycles of chemotherapy.
So cue the next song, and I will continue to dance on the knife's edge. I'm almost halfway done the dance, and I still have my army of angels looking after me...
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