The only thing worse than getting chemo...
Getting chemo sucks. I mean, really sucks. First off, just sitting in a chair for three hours while a very nice, very helpful nurse pumps what is essentially poison into my veins is at the very least tedious. There is not a lot to do, and for part of the time the nurse has to take down my old PICC dressing and replace it with a new one. But aside from that fifteen minute task, a lot of the time is spent sitting in the chair waiting for the poison to fill my veins. When it is all done, I get to go home with my baby bottle of more poison to run over the next two days, inconveniently attached to my PICC by an approximately one metre long tube. Okay, the medical term for it is an Intermate or Infusor, but the term baby bottle describes it so much better.
The baby bottle makes it impossible to shower. I wear a fanny pack (something I probably should have thrown out when the 80s ended and they were no longer fashionable) to contain the bottle, but as you might imagine it's also not that easy to sleep with a fanny pack around my waist. I sleep - son;t get me wrong - but it's not the best or most comfortable sleep for the next two nights. After 46(ish) hours my baby bottle is empty and can be disconnected. In an ideal world I would be able to do this all by myself, but given that my PICC is fixed not far from my right elbow and my right arm doesn't bend in such a manner that I can reach it, I need help to disconnect it. That means that my wife or my kids are exposed to the same chemo/poison (albeit only trace amounts) that I have been getting as they help me. We put the empty baby bottle with its tubing in a bright red biohazard bucket and I shower (again, as best as I can with a plastic bag held by elastics around my upper arm), ready to enjoy twelve reasonably normal days until my next treatment.
Except that they aren't normal. At least, not a sort of normal that I used to experience - before I had a diagnosis.
The adverse effects of the chemo start as soon as my oxaliplatin (one of the two drugs that run over the first two hours of each cycle) is infusing. I notice any little draft or change in air temperature as a kind of jolt of electricity on my skin. I wear a scarf in the middle of summer to protect the skin around my neck as a result, but thankfully it is a scarf that my daughter embroidered for me. It's nice and soft and will wrap around my neck twice comfortably, but even better than that it has Colon cancer... on one end and What a pain in the *ss on the other. The asterisk is bright pink and looks like, well... an anus.
Yeah... I love my daughter. She's pretty freaking awesome, and the scarf is just the tip of that particular iceberg.
The adverse effects continue. My voice goes very soft - a byproduct of the nerve toxicity of the chemo - and anything room temperature or colder will cause immediate tingling and what feels like electricity for up to ten days afterwards. The worst of these dysesthesias are over within 24 hours, but there is a constant reminder of the effects of the chemo on my nerves almost up to the next cycle of chemo. My bowel habits change (gross poop alert); I go from my normal one or two BMs per day to twelve or sometimes more for up to a week after my chemo. The chemo destroys the cells in my gut so of course it would affect my bowel habit, although understanding that doesn't make me like it more. I can take drugs to control my bowels, but that doesn't make me like it any more either. This also means that I get heartburn every night for a week after my chemo, meaning even more drugs to control that adverse effect. And then my appetite suffers as well, and since my surgery there's so much I can't eat that losing what little appetite I have is probably not healthy. I get tired - really tired - almost as soon as I've had my chemo. The tiredness lasts for a week to ten days afterwards, although honestly it never goes away completely and I am still pretty tired on the day I get my next cycle of chemo. I'm not losing my hair - the one adverse effect I wouldn't mind - but my hair and beard are definitely growing much more slowly.
That's quite the catalog, and I haven't described every single adverse effect or the full extent of the ones I have mentioned. It's a lot, just take my word for it. I actually felt sick - like my diagnosis had actually become an illness - for the first time after my second cycle. I had moments where I wondered whether it was worth it all or whether I even had the strength to continue this for six more cycles.
I do. I know this. And it is worth it. But still... it's a lot to go through. I really hope that most people reading this can't even imagine what it means to go through it, and I wish even more that they never find out.
So... given how bad all of this sounds - how bad it is to get chemo - what could possibly be worse than getting it?
Not getting chemo.
Wait... what?
See, here's the thing; I had been scheduled to start cycle 3 of my chemo today. I say had been scheduled with the full knowledge that the use of the past perfect tense means that it didn't happen. Given my litany of complaints about adverse effects not getting chemo should be a cause for celebration... so why is it worse than getting it? Because of the reason why I'm not getting my chemo, of course.
I am neutropenic.
You see, I described all of the adverse effects that I have been experiencing as symptoms - things that I am feeling that can be noticed or identified subjectively by myself as a patient. But neutropenia is the result of a sign - something that can be objectively measured by a medical practitioner but which is often not noticeable to the patient. A feeling of pounding in your temples is a symptom, for example, but the measurement of a high blood pressure by a nurse is a sign. In my case, a very helpful and skilled laboratory technologist drew my blood yesterday and ran it through an analyzer to look at two specific numbers in my blood profile - my platelets and my neutrophils. By my treatment protocol my platelets need to be above 75 and my neutrophils have to be 1.2 or above to continue. My platelets were 218 yesterday (reasonable, but down significantly from my pre-treatment value of 414) and my neutrophils were 1.1, just below the treatment threshold.
Oops.
"Hi John, it's Alex calling from the Cancer Centre." Her name isn't really Alex, but the important part is that I have spoken to this nurse many times before and she has always treated me with caring while being a consummate professional. We have a good rapport, in medical parlance, and there is little reason for her to sugar-coat things or go into needless detail with me. "I'm afraid your bloodwork was a bit off. We're hoping you will bounce back by tomorrow though, so if you could get your bloodwork repeated by 11:30..."
"I will get it done by ten," I assured her. "More time for everyone there to make decisions then, right?"
"Right," she chuckled. "I'll fax your orders over now. Just show up at the lab in the morning and we will get the results within an hour of the draw."
I thanked her and started to consider the ramifications of needing to get my blood redrawn the next day.
Obviously there is the hassle and expense of driving across town and paying for parking at a busy hospital to get a needle jabbed in my arm so that more of my blood can be sucked into test tubes only 24 hours after I did the exact same thing. Seriously though, that was the least of my concerns. I was far more aware of the deeper meaning of my blood work being 'a bit off'. You see, the chemotherapy that I am getting attacks my bone marrow and can kill off a significant portion of the developing blood cells within it. That's why there are bottom limits for platelets and neutrophils, as both of those cell types are produced in the bone marrow and are really important to my ongoing health. Platelets are needed to help with blood clotting and neutrophils are important in fighting bacterial infections. In the short term, being neutropenic (having low neutrophils) means that I am at increased risk of bacterial infections and those infections will be more serious for me than for people who are not on chemo because my body is not able to fight off the infection.
Febrile neutropenia is a rare but potentially life-threatening adverse effect from my chemotherapy. I'm aware of this and keep a thermometer and a treatment letter with me at all times to test for a temperature - anything over 38C (100.4 Fahrenheit) and I head straight to the emergency room and give them the letter; they will give me IV antibiotics within an hour. The antibiotics will treat the infection that my weakened immune system can't fight off. I probably won't need the antibiotics, but if I do I know they will be highly effective. It would not be hyperbole to describe them as potentially lifesaving.
But who wants to have to have their life saved? I have spent my life trying not to be saved. And the fact that my bone marrow has tanked and is still going down seventeen days after my second cycle of chemo (it should have reached bottom 7-10 days after my last cycle) makes me very, very aware of the unseen effects that the poison that I am getting to kill off metastases too small to detect is having. I mean, I can feel the effects when I get the chemo but it is a very poignant reminder of how fragile my body actually is when I see what has happened to my neutrophil count after only 1/4 of my treatments.
I got a call from a pharmacist at the cancer centre just over an hour after I got my blood drawn. My neutrophil count was down from yesterday, now 0.9 instead of 1.1. My chemo will definitely be delayed by a week. The dose of my oxaliplatin will also be decreased going forward.
I should be relieved, right? After all, I don't have to get that poison for another week now... right?
Yes, I do get at least a seven day reprieve from chemotherapy and all its associated adverse effects. I get to live a (reasonably) normal life for another week when I would otherwise be spending the next week feeling yucky and dealing with the adverse effects I can feel. But just like knowing about why the adverse effects happen doesn't make me like them, knowing that I get this reprieve doesn't make me happy.
It doesn't. I am, to put it mildly, not relieved that I am delayed by a week. I also have concerns about being on a lower dose of oxaliplatin.
Being delayed by a week means that my end date for finishing my chemo is also delayed by a week. And that's the best case scenario. There's no reason to think that my neutrophil count will continue to decline with ongoing treatments, but the more paranoid thoughts in my head think that is exactly what will happen. If my counts do decline in future cycles, I will be delayed further and further and further and...
I know it's paranoia. But it's my paranoia, and it doesn't like listening to reason or medical statistics. I'll still argue it into the ground, but it's not going to go down quietly.
Being delayed by a week means I need to get another blood test next week before my treatment, and I have no idea whether my counts will recover. I mean, they should, but I won't be able to feel it so until the number comes back I have to keep arguing my paranoia into submission. And if it doesn't recover next week then I am delayed another week. Wash, rinse, repeat, and if I don't recover in 4 weeks then I am officially done chemo. Two cycles instead of eight, but that would concern me as well.
You see, the trials that showed benefits for patients like me with a similar type of cancer all had the patients receiving eight cycles of chemo at full doses of oxaliplatin. If my dose of oxaliplatin is reduced or if I receive less than eight cycles, how certain can I be that any of the cancer cells that the two tumours I had were seeding into my bloodstream would be killed? I obviously will continue to go for regular monitoring and will do everything possible to live a healthy life, but in a small, paranoid corner of my mind I will always wonder what if?
Ironically, the only thing worse than getting chemo, it seems, is not getting chemo. And I've never been a fan of irony.
The baby bottle makes it impossible to shower. I wear a fanny pack (something I probably should have thrown out when the 80s ended and they were no longer fashionable) to contain the bottle, but as you might imagine it's also not that easy to sleep with a fanny pack around my waist. I sleep - son;t get me wrong - but it's not the best or most comfortable sleep for the next two nights. After 46(ish) hours my baby bottle is empty and can be disconnected. In an ideal world I would be able to do this all by myself, but given that my PICC is fixed not far from my right elbow and my right arm doesn't bend in such a manner that I can reach it, I need help to disconnect it. That means that my wife or my kids are exposed to the same chemo/poison (albeit only trace amounts) that I have been getting as they help me. We put the empty baby bottle with its tubing in a bright red biohazard bucket and I shower (again, as best as I can with a plastic bag held by elastics around my upper arm), ready to enjoy twelve reasonably normal days until my next treatment.
Except that they aren't normal. At least, not a sort of normal that I used to experience - before I had a diagnosis.
The adverse effects of the chemo start as soon as my oxaliplatin (one of the two drugs that run over the first two hours of each cycle) is infusing. I notice any little draft or change in air temperature as a kind of jolt of electricity on my skin. I wear a scarf in the middle of summer to protect the skin around my neck as a result, but thankfully it is a scarf that my daughter embroidered for me. It's nice and soft and will wrap around my neck twice comfortably, but even better than that it has Colon cancer... on one end and What a pain in the *ss on the other. The asterisk is bright pink and looks like, well... an anus.
 |
| She's that awesome. |
The adverse effects continue. My voice goes very soft - a byproduct of the nerve toxicity of the chemo - and anything room temperature or colder will cause immediate tingling and what feels like electricity for up to ten days afterwards. The worst of these dysesthesias are over within 24 hours, but there is a constant reminder of the effects of the chemo on my nerves almost up to the next cycle of chemo. My bowel habits change (gross poop alert); I go from my normal one or two BMs per day to twelve or sometimes more for up to a week after my chemo. The chemo destroys the cells in my gut so of course it would affect my bowel habit, although understanding that doesn't make me like it more. I can take drugs to control my bowels, but that doesn't make me like it any more either. This also means that I get heartburn every night for a week after my chemo, meaning even more drugs to control that adverse effect. And then my appetite suffers as well, and since my surgery there's so much I can't eat that losing what little appetite I have is probably not healthy. I get tired - really tired - almost as soon as I've had my chemo. The tiredness lasts for a week to ten days afterwards, although honestly it never goes away completely and I am still pretty tired on the day I get my next cycle of chemo. I'm not losing my hair - the one adverse effect I wouldn't mind - but my hair and beard are definitely growing much more slowly.
That's quite the catalog, and I haven't described every single adverse effect or the full extent of the ones I have mentioned. It's a lot, just take my word for it. I actually felt sick - like my diagnosis had actually become an illness - for the first time after my second cycle. I had moments where I wondered whether it was worth it all or whether I even had the strength to continue this for six more cycles.
I do. I know this. And it is worth it. But still... it's a lot to go through. I really hope that most people reading this can't even imagine what it means to go through it, and I wish even more that they never find out.
So... given how bad all of this sounds - how bad it is to get chemo - what could possibly be worse than getting it?
Not getting chemo.
Wait... what?
See, here's the thing; I had been scheduled to start cycle 3 of my chemo today. I say had been scheduled with the full knowledge that the use of the past perfect tense means that it didn't happen. Given my litany of complaints about adverse effects not getting chemo should be a cause for celebration... so why is it worse than getting it? Because of the reason why I'm not getting my chemo, of course.
I am neutropenic.
You see, I described all of the adverse effects that I have been experiencing as symptoms - things that I am feeling that can be noticed or identified subjectively by myself as a patient. But neutropenia is the result of a sign - something that can be objectively measured by a medical practitioner but which is often not noticeable to the patient. A feeling of pounding in your temples is a symptom, for example, but the measurement of a high blood pressure by a nurse is a sign. In my case, a very helpful and skilled laboratory technologist drew my blood yesterday and ran it through an analyzer to look at two specific numbers in my blood profile - my platelets and my neutrophils. By my treatment protocol my platelets need to be above 75 and my neutrophils have to be 1.2 or above to continue. My platelets were 218 yesterday (reasonable, but down significantly from my pre-treatment value of 414) and my neutrophils were 1.1, just below the treatment threshold.
Oops.
"Hi John, it's Alex calling from the Cancer Centre." Her name isn't really Alex, but the important part is that I have spoken to this nurse many times before and she has always treated me with caring while being a consummate professional. We have a good rapport, in medical parlance, and there is little reason for her to sugar-coat things or go into needless detail with me. "I'm afraid your bloodwork was a bit off. We're hoping you will bounce back by tomorrow though, so if you could get your bloodwork repeated by 11:30..."
"I will get it done by ten," I assured her. "More time for everyone there to make decisions then, right?"
"Right," she chuckled. "I'll fax your orders over now. Just show up at the lab in the morning and we will get the results within an hour of the draw."
I thanked her and started to consider the ramifications of needing to get my blood redrawn the next day.
Obviously there is the hassle and expense of driving across town and paying for parking at a busy hospital to get a needle jabbed in my arm so that more of my blood can be sucked into test tubes only 24 hours after I did the exact same thing. Seriously though, that was the least of my concerns. I was far more aware of the deeper meaning of my blood work being 'a bit off'. You see, the chemotherapy that I am getting attacks my bone marrow and can kill off a significant portion of the developing blood cells within it. That's why there are bottom limits for platelets and neutrophils, as both of those cell types are produced in the bone marrow and are really important to my ongoing health. Platelets are needed to help with blood clotting and neutrophils are important in fighting bacterial infections. In the short term, being neutropenic (having low neutrophils) means that I am at increased risk of bacterial infections and those infections will be more serious for me than for people who are not on chemo because my body is not able to fight off the infection.
Febrile neutropenia is a rare but potentially life-threatening adverse effect from my chemotherapy. I'm aware of this and keep a thermometer and a treatment letter with me at all times to test for a temperature - anything over 38C (100.4 Fahrenheit) and I head straight to the emergency room and give them the letter; they will give me IV antibiotics within an hour. The antibiotics will treat the infection that my weakened immune system can't fight off. I probably won't need the antibiotics, but if I do I know they will be highly effective. It would not be hyperbole to describe them as potentially lifesaving.
But who wants to have to have their life saved? I have spent my life trying not to be saved. And the fact that my bone marrow has tanked and is still going down seventeen days after my second cycle of chemo (it should have reached bottom 7-10 days after my last cycle) makes me very, very aware of the unseen effects that the poison that I am getting to kill off metastases too small to detect is having. I mean, I can feel the effects when I get the chemo but it is a very poignant reminder of how fragile my body actually is when I see what has happened to my neutrophil count after only 1/4 of my treatments.
I got a call from a pharmacist at the cancer centre just over an hour after I got my blood drawn. My neutrophil count was down from yesterday, now 0.9 instead of 1.1. My chemo will definitely be delayed by a week. The dose of my oxaliplatin will also be decreased going forward.
I should be relieved, right? After all, I don't have to get that poison for another week now... right?
Yes, I do get at least a seven day reprieve from chemotherapy and all its associated adverse effects. I get to live a (reasonably) normal life for another week when I would otherwise be spending the next week feeling yucky and dealing with the adverse effects I can feel. But just like knowing about why the adverse effects happen doesn't make me like them, knowing that I get this reprieve doesn't make me happy.
It doesn't. I am, to put it mildly, not relieved that I am delayed by a week. I also have concerns about being on a lower dose of oxaliplatin.
Being delayed by a week means that my end date for finishing my chemo is also delayed by a week. And that's the best case scenario. There's no reason to think that my neutrophil count will continue to decline with ongoing treatments, but the more paranoid thoughts in my head think that is exactly what will happen. If my counts do decline in future cycles, I will be delayed further and further and further and...
I know it's paranoia. But it's my paranoia, and it doesn't like listening to reason or medical statistics. I'll still argue it into the ground, but it's not going to go down quietly.
Being delayed by a week means I need to get another blood test next week before my treatment, and I have no idea whether my counts will recover. I mean, they should, but I won't be able to feel it so until the number comes back I have to keep arguing my paranoia into submission. And if it doesn't recover next week then I am delayed another week. Wash, rinse, repeat, and if I don't recover in 4 weeks then I am officially done chemo. Two cycles instead of eight, but that would concern me as well.
You see, the trials that showed benefits for patients like me with a similar type of cancer all had the patients receiving eight cycles of chemo at full doses of oxaliplatin. If my dose of oxaliplatin is reduced or if I receive less than eight cycles, how certain can I be that any of the cancer cells that the two tumours I had were seeding into my bloodstream would be killed? I obviously will continue to go for regular monitoring and will do everything possible to live a healthy life, but in a small, paranoid corner of my mind I will always wonder what if?
Ironically, the only thing worse than getting chemo, it seems, is not getting chemo. And I've never been a fan of irony.
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