The Ironic Lily Pad.
I've written about lily pads before, and frankly I think it was some of my better writing. I'd humbly suggest you go back and re-read it at this point, but if you are busy and just need a refresher the gist of that very early post is that coping with the diagnosis and treatment and recovery associated with cancer is too big to be done at once. I need to take it one step at a time, like a frog crossing a pond using a series of lily pads (which they totally don't do but let's not get hung up on the literal here).
With me so far? Good.
So the lily pad that I have been on recently was kind of scary. In my last blog post I wrote about being neutropenic and how my chemotherapy was delayed because of the risk of wiping out my bone marrow so badly that it wouldn't recover. I also wrote about the irony involved in my realization that the only thing worse than getting poisoned every two weeks with the resultant negative effects including neutropenia was not getting poisoned every two weeks. I concluded with the statement that I am not a fan of irony, and I still stand by that philosophy. Because of this only thing worse dichotomy I have named this particular lily pad the ironic lily pad.
Irony sucks, unless you are watching it as a spectator. Or, as my sweet and brilliant sister pointed out, if you are watching it happen to someone you love.
Yep. This is what happened to my Dr. Seuss-approved heart meter when she sent that text. I'm not always a Grinch but I felt like it in that moment and I will love my sister even more because she reminded me that while my cancer journey is not all about me, to the people that matter it is all about me. She is part of my army of many, many angels who are helping me get through this bizarre obstacle course of treatments and changes and diagnostics and more changes with some semblance of dignity and with my faculties intact.
Wow! That's a lot of callbacks to your own blogs in a few paragraphs, you may be saying. Don't you have anything original to say?
No. Nobody does. There are no original ideas, and to prove that I am quoting Mark Twain who said that while we may express them in novel ways or with different words, there are no truly original concepts left. And who am I to argue with a sarcastic river boat pilot with an attack moustache?
So. Irony.
When I left you last I was significantly neutropenic with a count of 0.9, where my treatment protocol stipulates I have to be 1.2 or above to continue with treatment. My therapy was held for a week and my bloodwork was repeated. My neutrophil count had positively skyrocketed to 1.69 which sounds amazing, but the truth is that it was about 60% higher than that the day before my last round of chemo and I still wound up neutropenic so the chances are very good that continuing my chemo will continue to poison my bone marrow and prevent it from making the cells I need to fight infections. But if I don't continue the chemo, I run the risk that the adenocarcinoma cells from the primary tumour in my rectum or the metastatic tumour in that solitary lymph node had seeded cancer cells into my brain or liver or pancreas or bone marrow or kidneys. Each of those tumours was around 1 cm in size and a 1 cm tumour contains about 100 million cells. Given that both of these tumours was directly connected to my bloodstream, that's a chance I don't want to take.
I've had several CT scans and MRIs to stage my cancer. While there are no tumours outside my pelvis that showed up and only one suspicious lymph node that has presumably been removed, it is tempting to think that I have no metastases anywhere else. There are two problems with this assumption though. First off, neither CT nor MRI looked at my head and neck and while the brain is one of the less common metastatic targets for adenocarcinoma it is still possible. I'll get to why that is significant in a few moments, but first I want to deal with the second reason why assuming there are NO metastases from the 200 million cancer cells that were removed from my body might be dangerous. That is related to the problem of resolution in the scanning technologies used.
Hollywood would have us believe that a single CT or MRI reveals almost infinite detail to the miracle-working doctors who peer at them on their monitors. While these non-invasive technologies are impressive and help significantly with the diagnosis of many diseases and injuries, they aren't really super helpful in identifying small metastases. They are pretty good at finding things like the 10mm (1 cm) tumours that I had, but once the size is about half that the background noise from normal cells makes seeing them as 'different' almost impossible. There are new technologies being developed to improve the resolution of different scans, but it's giving me a headache even trying to translate this 'summary' into something that my seven years of university and decades of advanced clinical practice can comprehend. That's another vote for a discussion of headaches and I'll get to them in a moment, but in the meantime let me just close off this resolution and background noise discussion by pointing out that a 5mm tumour - half the diameter of the ones removed from me - would still have ten million cancer cells each and they would be all but invisible under most current scanning technologies. My radiation oncologist told me that 3mm was the threshold of detection with good scans, but that would still be over 1 million cells in each metastatic growth. While it's true that smaller tumours have a lower chance of progressing to larger growths because our bodies are pretty good at finding them and killing them, it has still happened in me twice and I would like to do everything possible to prevent that happening again.
Ever.
So. Headaches.
As long as I can remember I have experienced migraines. When I say migraines I am not talking about severe headaches. No offence to those of you who have said they are having a migraine when you feel a throbbing in your temples and have difficulty thinking, but if you haven't thrown up or seen bright flashing neon castles that aren't really there or had to lay down in a pitch-black room because the slightest light source feels like a needle being jabbed into your brain or almost passed out when someone laughed in the next room, it wasn't a migraine. It was a bad headache and that is definitely worthy of sympathy, but it's not a migraine. Or, as my aunt might have suggested, if you haven't driven into a bus because you didn't see it, it's not a migraine.
At my peak I experienced several migraines each month and was unable to function for at least twelve hours and up to three days with each event. I was twelve and thought everybody got these debilitating headaches. My common-sense family doctor diagnosed me with migraine based on my symptoms and discussed common migraine triggers. Eventually and through process of elimination we discovered that whole egg - things like fried eggs or scrambled eggs or pad thai - was a strong trigger for my migraines. If eggs were baked into things like cakes or used as binder in patties that included breadcrumbs they didn't seem to trigger migraines. I cut eggs out of my diet (which was a shame because to this day I think they are delicious) and this dramatically reduced the rate of migraines I experience. I still get headaches, but it's rare that I experience more than one migraine a year now.
But what does my childhood experience with migraines have to do with my current ironic lily pad? The answer lies in what you do when you have a headache.
Everyone know the answer to this riddle. We are bombarded by advertisements for a dizzying variety of the same few analgesics to treat minor pain, and no matter what marketing buzz-words are emblazoned on the package or what the clever animations show about how much more effective this liquid gel formulation is compared to the competitors Troglydytian compressed powder tablets, they all get the job done to the same degree when compared in blinded clinical trials. My personal choice for a headache is simple, generic acetaminophen in the largest and most cost-effective package size available.
What can I say? I'm a cheapskate. An educated one, but a cheapskate all the same.
So how does generic acetaminophen act as a fulcrum for the lever of irony? Well, acetaminophen is a pretty good pain reliever, but it is also really good as an antipyretic. In other words, it knocks down fevers. While that is useful if you have a viral illness like the common cold, it can be potentially confusing at best and dangerous at worst if you are immunosuppressed. Taking any over-the-counter analgesics when you are immunosuppressed can mask an underlying infection, delaying treatment to the point that severe injury or even death may result. And the educated cheapskate in me does not want that to happen. I've got at least three more decades of cheapskatedness to get out of my system.
I haven't had any migraines since I was was diagnosed with cancer which has been an unexpected blessing - usually stressful situations will trigger migraines for me, and any disruption in diet can trigger them as well and I have a whole long spreadsheet chronicling how forked up my diet has gotten. But I still get headaches - normal, everyday, pedestrian headaches. Whenever I do and I feel like taking some acetaminophen I take my temperature (and document it on my spreadsheet) because I don't want to mask any fever I might be having. To refresh your memory, I carry around my golden ticket - a letter from the cancer agency instructing staff in the emergency room on how to treat me and how quickly (read very, very, VERY quickly) to treat me if I have a temperature over 38C (100.4 Fahrenheit). And while I was neutropenic I was woken up three nights in a row with a throbbing headache that was simply begging to be medicated.
No problem. I took my temperature - always below 37C - and took 1000 mg of acetaminophen and went back to bed. Within half an hour the headache was subdued - not eradicated, but now at least tolerable - and I went back to sleep. I had a few headaches during the day as well and went through the same two-step - take my temp and take some acetaminophen. But as I waited for my repeat bloodwork that would determine whether I could have the bad option of poisoning myself again or the worse option of not poisoning myself I started to question why I was getting so many headaches, and always in the same spot behind my right eye.
Always in the same spot. That's not good when there is a chance, however small, that you could have an undetectable tumour growing. And the one thing that will help you get rid of that tumour is not being given to you because it is actively trying to kill you through a different, more direct attack on your bone marrow.
Yep. The ugly head of irony is reared once more.
Before I was diagnosed with cancer I could have headaches and just lament having a headache. I would cough or sneeze or even - spoiler alert - get a cold. I could have some lower back pain and wonder if I haven't been exercising enough or maybe I've been exercising too much (another ugly head of irony being raised in that consideration) and not wonder if I'm developing a bony metastatic growth on my spine. I could have simple, everyday complaints like a simple, everyday person and not think that it is another tumour trying to cut short my sarcastic commentary on life, the universe, and everything.
At this point the nerd in me really wants to tell you to go out and read (or re-read) the five-part trilogy written by Douglas Adams. But that's going to take some time so let me finish up my stream of consciousness for today before you get to your homework.
I take my temperature and document it like a crazy person every time I sneeze or cough or feel the slightest bit "off". I take acetaminophen for my occasional headaches, like the one I was woken up to which prompted this blog post. I wonder if every little deviation from my normal life experience is the first little whispers of another tumour growing in some part of my body that is now strong enough to mess up my biochemistry yet which are too small for the best tools in medical science would still be powerless to detect.
I went to the cancer treatment centre and got poisoned again yesterday. Before I sat in the comfy chair and had the sweet, helpful angel nurses pump the poison into my body I reported to a helpful angel clerk so that they knew I was here.
"Are you feeling well enough to get your chemo today?" she asked. It's a standard question and I get why they ask it, but the irony of the question struck me harder than usual. I fought back a response, but one of the other patients waiting in the lobby had an even emptier bag of sh*ts to give at the moment.
"Isn't that ironic?" she asked me and another patient who was waiting. "I mean, if we felt well we wouldn't want to get chemo, right?"
Yes, she is right... from a certain point of view. But the truth is that in that moment I was actually excited to go into the treatment room and have the IV hooked up to my PICC and get a slightly lower dose of one poison pumped into moe over two hours before getting the same dose of another poison rapidly infused and my now-familiar baby bottle hooked up to be a constant reminder of my new normal for the next two days.
Excited. Excited.
Excited?
Yes. I was excited. Because this miserable short-term pain that I am going through is totally worth it. I will get my life back. I will be able to kayak again and go to the gym and have a shower without a bread bag held around my upper arm with two elastic bands. I will be able to pee any way I want, anywhere I want without worrying about exposing others to the toxic poisons in my urine. I will be able to kiss my wife any time I want and any way we feel like without worrying about exposing myself to infection or exposing her to my poison-laden saliva.
Okay, that might have been an overshare. I guess I better not mention being excited to to not use condoms despite my vasectomy twelve years ago, right?
I'm excited because if there are millions of cancer cells hiding out in my lungs or liver or pancreas or brain, the poison will kill most and weaken the rest so that my body can wipe them out. I'm excited because the only reason for this poison is to do that, and if I can't get the poison because I'm neutropenic then I feel like the main tool in my long-life tool chest has been taken away from me. I'm excited because I get to do the one constructive thing that I can do right now - get better.
I can feel the cold, clammy grip of irony weakening. The next lily pad looks like it's floating close enough that I can safely jump to it.
Time to move on...
With me so far? Good.
So the lily pad that I have been on recently was kind of scary. In my last blog post I wrote about being neutropenic and how my chemotherapy was delayed because of the risk of wiping out my bone marrow so badly that it wouldn't recover. I also wrote about the irony involved in my realization that the only thing worse than getting poisoned every two weeks with the resultant negative effects including neutropenia was not getting poisoned every two weeks. I concluded with the statement that I am not a fan of irony, and I still stand by that philosophy. Because of this only thing worse dichotomy I have named this particular lily pad the ironic lily pad.
Irony sucks, unless you are watching it as a spectator. Or, as my sweet and brilliant sister pointed out, if you are watching it happen to someone you love.
Wow! That's a lot of callbacks to your own blogs in a few paragraphs, you may be saying. Don't you have anything original to say?
No. Nobody does. There are no original ideas, and to prove that I am quoting Mark Twain who said that while we may express them in novel ways or with different words, there are no truly original concepts left. And who am I to argue with a sarcastic river boat pilot with an attack moustache?
So. Irony.
When I left you last I was significantly neutropenic with a count of 0.9, where my treatment protocol stipulates I have to be 1.2 or above to continue with treatment. My therapy was held for a week and my bloodwork was repeated. My neutrophil count had positively skyrocketed to 1.69 which sounds amazing, but the truth is that it was about 60% higher than that the day before my last round of chemo and I still wound up neutropenic so the chances are very good that continuing my chemo will continue to poison my bone marrow and prevent it from making the cells I need to fight infections. But if I don't continue the chemo, I run the risk that the adenocarcinoma cells from the primary tumour in my rectum or the metastatic tumour in that solitary lymph node had seeded cancer cells into my brain or liver or pancreas or bone marrow or kidneys. Each of those tumours was around 1 cm in size and a 1 cm tumour contains about 100 million cells. Given that both of these tumours was directly connected to my bloodstream, that's a chance I don't want to take.
I've had several CT scans and MRIs to stage my cancer. While there are no tumours outside my pelvis that showed up and only one suspicious lymph node that has presumably been removed, it is tempting to think that I have no metastases anywhere else. There are two problems with this assumption though. First off, neither CT nor MRI looked at my head and neck and while the brain is one of the less common metastatic targets for adenocarcinoma it is still possible. I'll get to why that is significant in a few moments, but first I want to deal with the second reason why assuming there are NO metastases from the 200 million cancer cells that were removed from my body might be dangerous. That is related to the problem of resolution in the scanning technologies used.
Hollywood would have us believe that a single CT or MRI reveals almost infinite detail to the miracle-working doctors who peer at them on their monitors. While these non-invasive technologies are impressive and help significantly with the diagnosis of many diseases and injuries, they aren't really super helpful in identifying small metastases. They are pretty good at finding things like the 10mm (1 cm) tumours that I had, but once the size is about half that the background noise from normal cells makes seeing them as 'different' almost impossible. There are new technologies being developed to improve the resolution of different scans, but it's giving me a headache even trying to translate this 'summary' into something that my seven years of university and decades of advanced clinical practice can comprehend. That's another vote for a discussion of headaches and I'll get to them in a moment, but in the meantime let me just close off this resolution and background noise discussion by pointing out that a 5mm tumour - half the diameter of the ones removed from me - would still have ten million cancer cells each and they would be all but invisible under most current scanning technologies. My radiation oncologist told me that 3mm was the threshold of detection with good scans, but that would still be over 1 million cells in each metastatic growth. While it's true that smaller tumours have a lower chance of progressing to larger growths because our bodies are pretty good at finding them and killing them, it has still happened in me twice and I would like to do everything possible to prevent that happening again.
Ever.
So. Headaches.
As long as I can remember I have experienced migraines. When I say migraines I am not talking about severe headaches. No offence to those of you who have said they are having a migraine when you feel a throbbing in your temples and have difficulty thinking, but if you haven't thrown up or seen bright flashing neon castles that aren't really there or had to lay down in a pitch-black room because the slightest light source feels like a needle being jabbed into your brain or almost passed out when someone laughed in the next room, it wasn't a migraine. It was a bad headache and that is definitely worthy of sympathy, but it's not a migraine. Or, as my aunt might have suggested, if you haven't driven into a bus because you didn't see it, it's not a migraine.
At my peak I experienced several migraines each month and was unable to function for at least twelve hours and up to three days with each event. I was twelve and thought everybody got these debilitating headaches. My common-sense family doctor diagnosed me with migraine based on my symptoms and discussed common migraine triggers. Eventually and through process of elimination we discovered that whole egg - things like fried eggs or scrambled eggs or pad thai - was a strong trigger for my migraines. If eggs were baked into things like cakes or used as binder in patties that included breadcrumbs they didn't seem to trigger migraines. I cut eggs out of my diet (which was a shame because to this day I think they are delicious) and this dramatically reduced the rate of migraines I experience. I still get headaches, but it's rare that I experience more than one migraine a year now.
But what does my childhood experience with migraines have to do with my current ironic lily pad? The answer lies in what you do when you have a headache.
Everyone know the answer to this riddle. We are bombarded by advertisements for a dizzying variety of the same few analgesics to treat minor pain, and no matter what marketing buzz-words are emblazoned on the package or what the clever animations show about how much more effective this liquid gel formulation is compared to the competitors Troglydytian compressed powder tablets, they all get the job done to the same degree when compared in blinded clinical trials. My personal choice for a headache is simple, generic acetaminophen in the largest and most cost-effective package size available.
What can I say? I'm a cheapskate. An educated one, but a cheapskate all the same.
So how does generic acetaminophen act as a fulcrum for the lever of irony? Well, acetaminophen is a pretty good pain reliever, but it is also really good as an antipyretic. In other words, it knocks down fevers. While that is useful if you have a viral illness like the common cold, it can be potentially confusing at best and dangerous at worst if you are immunosuppressed. Taking any over-the-counter analgesics when you are immunosuppressed can mask an underlying infection, delaying treatment to the point that severe injury or even death may result. And the educated cheapskate in me does not want that to happen. I've got at least three more decades of cheapskatedness to get out of my system.
I haven't had any migraines since I was was diagnosed with cancer which has been an unexpected blessing - usually stressful situations will trigger migraines for me, and any disruption in diet can trigger them as well and I have a whole long spreadsheet chronicling how forked up my diet has gotten. But I still get headaches - normal, everyday, pedestrian headaches. Whenever I do and I feel like taking some acetaminophen I take my temperature (and document it on my spreadsheet) because I don't want to mask any fever I might be having. To refresh your memory, I carry around my golden ticket - a letter from the cancer agency instructing staff in the emergency room on how to treat me and how quickly (read very, very, VERY quickly) to treat me if I have a temperature over 38C (100.4 Fahrenheit). And while I was neutropenic I was woken up three nights in a row with a throbbing headache that was simply begging to be medicated.
No problem. I took my temperature - always below 37C - and took 1000 mg of acetaminophen and went back to bed. Within half an hour the headache was subdued - not eradicated, but now at least tolerable - and I went back to sleep. I had a few headaches during the day as well and went through the same two-step - take my temp and take some acetaminophen. But as I waited for my repeat bloodwork that would determine whether I could have the bad option of poisoning myself again or the worse option of not poisoning myself I started to question why I was getting so many headaches, and always in the same spot behind my right eye.
Always in the same spot. That's not good when there is a chance, however small, that you could have an undetectable tumour growing. And the one thing that will help you get rid of that tumour is not being given to you because it is actively trying to kill you through a different, more direct attack on your bone marrow.
Yep. The ugly head of irony is reared once more.
Before I was diagnosed with cancer I could have headaches and just lament having a headache. I would cough or sneeze or even - spoiler alert - get a cold. I could have some lower back pain and wonder if I haven't been exercising enough or maybe I've been exercising too much (another ugly head of irony being raised in that consideration) and not wonder if I'm developing a bony metastatic growth on my spine. I could have simple, everyday complaints like a simple, everyday person and not think that it is another tumour trying to cut short my sarcastic commentary on life, the universe, and everything.
At this point the nerd in me really wants to tell you to go out and read (or re-read) the five-part trilogy written by Douglas Adams. But that's going to take some time so let me finish up my stream of consciousness for today before you get to your homework.
I take my temperature and document it like a crazy person every time I sneeze or cough or feel the slightest bit "off". I take acetaminophen for my occasional headaches, like the one I was woken up to which prompted this blog post. I wonder if every little deviation from my normal life experience is the first little whispers of another tumour growing in some part of my body that is now strong enough to mess up my biochemistry yet which are too small for the best tools in medical science would still be powerless to detect.
I went to the cancer treatment centre and got poisoned again yesterday. Before I sat in the comfy chair and had the sweet, helpful angel nurses pump the poison into my body I reported to a helpful angel clerk so that they knew I was here.
"Are you feeling well enough to get your chemo today?" she asked. It's a standard question and I get why they ask it, but the irony of the question struck me harder than usual. I fought back a response, but one of the other patients waiting in the lobby had an even emptier bag of sh*ts to give at the moment.
"Isn't that ironic?" she asked me and another patient who was waiting. "I mean, if we felt well we wouldn't want to get chemo, right?"
Yes, she is right... from a certain point of view. But the truth is that in that moment I was actually excited to go into the treatment room and have the IV hooked up to my PICC and get a slightly lower dose of one poison pumped into moe over two hours before getting the same dose of another poison rapidly infused and my now-familiar baby bottle hooked up to be a constant reminder of my new normal for the next two days.
Excited. Excited.
Excited?
Yes. I was excited. Because this miserable short-term pain that I am going through is totally worth it. I will get my life back. I will be able to kayak again and go to the gym and have a shower without a bread bag held around my upper arm with two elastic bands. I will be able to pee any way I want, anywhere I want without worrying about exposing others to the toxic poisons in my urine. I will be able to kiss my wife any time I want and any way we feel like without worrying about exposing myself to infection or exposing her to my poison-laden saliva.
Okay, that might have been an overshare. I guess I better not mention being excited to to not use condoms despite my vasectomy twelve years ago, right?
I'm excited because if there are millions of cancer cells hiding out in my lungs or liver or pancreas or brain, the poison will kill most and weaken the rest so that my body can wipe them out. I'm excited because the only reason for this poison is to do that, and if I can't get the poison because I'm neutropenic then I feel like the main tool in my long-life tool chest has been taken away from me. I'm excited because I get to do the one constructive thing that I can do right now - get better.
I can feel the cold, clammy grip of irony weakening. The next lily pad looks like it's floating close enough that I can safely jump to it.
Time to move on...
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