Change of route detected. Recalculating...
So remember a few posts ago when I went into detail about the treatment regimen I was on?
Remember the letters GIRCRT?
No?
"Recalculating..."
When I was a teenager I spent hundreds of hours learning how to use a compass and maps or charts to navigate through the woods. Eventually, I learned how to apply the same skills - and even added a few others related to radio navigation - to learn how to navigate as I flew over the woods. All of that skill is interesting, but it's almost as obsolete as Morse code now. The Global Positioning System - GPS - has supplanted many of these skills, delivering extremely accurate positioning on a variety of maps directly on our cell phones or smart watches. And with the ubiquity of GPS has come another technological wonder that has quietly been inserted into our lives; artificial voices that provide us with instructions.
We've all likely encountered this phenomenon when we make a wrong turn and our GPS patiently tells us that it needs a moment to think. The phenomenon even spawned a popular car ad about how life can throw you curves. The intent of the ad is to tell you that it makes more sense to have a vehicle that will accommodate the unknown that is waiting around the next wrong turn or twist that life throws us. The reason that this ad works well is that we have almost become cybernetic superhumans thanks to our smartphones, our intelligence and wayfinding skills vastly improved because of the small hunk of metal and glass in our hands. The concept of our cell phones guiding our every move and redirecting us when we fail to follow its guidance is so commonplace that a car manufacturer can tap into that idea in order to sell their products.
"Recalculating..." It's almost as ubiquitous as our cell phones.
But what does that have to do with the six letters that define my therapy, even if they don't define me? Well, just like encountering heavy traffic or making an unanticipated turn in the real world, my cancer treatment team can only predict so much about where I will go along my journey. And - like so many other things related to my diagnosis and treatment - irony is in full effect.
Let me explain.
I am on my last day of my chemoradiation. I've taken capecitabine for twenty-four days and received twenty-four out of a planned twenty-five fractions of radiation. I'm experiencing virtually no side effects other than the fully expected ones - a bit of post-radiotherapy tiredness, some mild changes in taste half an hour after taking my chemotherapy, some mild skin irritation and loss of hair where the radiation is beamed through my skin. The ones that would concern my oncology team - things like mouth sores (stomatitis), severe skin changes on my hands and feet, vomiting, diarrhea, or cardiovascular changes - have been completely absent.
"You're tolerating the capecitabine really well. That's why I'm going to change it when you are done with radiation."
That ironic statement came from my medical oncologist a few weeks ago.
Capecitabine - the oral chemotherapy agent that I have been taking under GIRCRT - is reserved for more frail patients or paradoxically for those that are having difficulty tolerating it you see. As long as they aren't having life-threatening adverse effects, these patients would persist on the oral therapy rather than move on to more aggressive therapy. Because I am healthy and tolerating the capecitabine well, I can probably tolerate this more aggressive therapy.
Yeah! Who loves irony?
But why would I expose myself to more aggressive drugs that are more toxic than the one I am currently taking? The answer is simple; the more aggressive my chemotherapy, the more likely it is that I will have a resultant cure.
I know I said that statistics don't matter when applied to the individual. I still believe that, both for me and for my patients. But I wouldn't be doing any of this if I didn't pay at least a little attention to statistics. I could have made that assumption after my colonoscopy, assuming that my gastroenterologist had collected all of the primary tumour (which, as it turns out, they did). I could have not undergone my lower anterior resection, secure in my belief that I would be one of the statistical non-conformers. But if I had done that, my surgeon would never have found the metastatic lymph node that wasn't visible on CT or MRI, and it would still be seeding adenocarcinoma into my bloodstream as I wandered the planet, assuming that I no longer had cancer.
Instead, I am choosing to assume that if I did nothing, I would have a recurrence of my cancer (even though this view is wildly uncharacteristic for my usually optimistic perspective). As such, if my medical team advocates for a therapy that will reduce this risk of recurrence, I will probably take it. I mean, there is a limit; I wouldn't undergo chemotherapy that made me violently ill if it only offered to extend my life a small amount, for example. But in this case, the more aggressive therapy offers me a greater chance of a cure, of living another thirty or forty or fifty years without ever having to say I have cancer.
Remember my decision about radiotherapy? That decreased my chance of a recurrence of my cancer by half, but only if I assumed that I would have a recurrence. If I assumed I wouldn't, it only serves to expose me to risk. This is much the same; if I stay with the same capecitabine therapy that I am on, there is a greater risk that somewhere out there in my body a metastatic process is starting that will result in more cancer in the next five years. So I will assume that this is the case - because I want to avoid this worst case scenario - and that alternatives that reduce my risk of that metastasis taking hold are warranted.
Not everyone facing the decisions that I am would make the same choice. I respect that and will support anyone in doing what they think is right for them. But this therapy is right for me, and because of that I will go through it even though I will likely experience greater side effects.
Short-term pain for long-term gain.
So... what is the proposed change?
Instead of six letters, my therapy will change to now be nine. That's 50% better, right? After I finish my 5 weeks of capecitabine and radiotherapy today, I will get four weeks off treatment and then change to GIRAJFFOX (GastroIntestinal Rectal AdJuvant Folinic Acid, Fluorouracil, and OXaliplatin). This is the 'gold standard' treatment for resected rectal cancer, the treatment upon which all other therapies are compared. I will go into more detail about what this regimen involves - adverse effects and the like - in another post. For now, let me give you a high-level overview of my recalculated route, with turn-by-turn directions following on later.
First off, this is IV (IntraVenous) therapy instead of oral therapy. In other words, instead of swallowing a handful of pills twice a day, these drugs will be infused into my veins. Fortunately I am not needle-phobic so the thought of being poked to get my therapy doesn't bother me. But this is where this first factor has a big Venn-diagram crossover with the second; I will receive GIRAJFFOX for 4 1/2 months. The risk of damaging my veins from repeated punctures every time I receive chemo is too great, so I will need to get a PICC (Peripherally-Inserted Central Catheter) to make the process easier on me and reduce the risk of damage to my veins.
One good thing about this new treatment is that I get one infusion of its three drugs every two weeks. I will go into the local treatment centre and sit in a comfortable chair while nurses infuse the oxaliplatin and folinic acid over two hours. Once those IV bags are empty, they will 'push' a bolus dose of fluorouracil into the catheter and then hook up a portable infusion device (in my case, a Baxter Intermate) that will infuse a larger dose of fluorouracil over the next 46 hours. I can then go home and live a (reasonably) normal life as this elastomeric ("stretchy") infusion device delivers the fluorouracil slowly into my bloodstream. Two days later the stretchy balloon in the Intermate will be empty and I can clamp off both sides of the IV line and disconnect the Intermate and go on with my life for the next twelve days before doing the whole thing all over again.
Simple, right?
Okay - full disclosure here: there are a lot more steps involved than this. But right now I'm just giving you an overview of the route, not telling you exactly which street I will turn on and exactly how many potholes I will hit on that street.
That's detail that can be saved for later.
For now, I'm hopeful that this is the last time I will hear recalculating in relation to my cancer journey. Unless it's because there is construction enroute to the cancer treatment centre, that is...
Remember the letters GIRCRT?
No?
"Recalculating..."
When I was a teenager I spent hundreds of hours learning how to use a compass and maps or charts to navigate through the woods. Eventually, I learned how to apply the same skills - and even added a few others related to radio navigation - to learn how to navigate as I flew over the woods. All of that skill is interesting, but it's almost as obsolete as Morse code now. The Global Positioning System - GPS - has supplanted many of these skills, delivering extremely accurate positioning on a variety of maps directly on our cell phones or smart watches. And with the ubiquity of GPS has come another technological wonder that has quietly been inserted into our lives; artificial voices that provide us with instructions.
We've all likely encountered this phenomenon when we make a wrong turn and our GPS patiently tells us that it needs a moment to think. The phenomenon even spawned a popular car ad about how life can throw you curves. The intent of the ad is to tell you that it makes more sense to have a vehicle that will accommodate the unknown that is waiting around the next wrong turn or twist that life throws us. The reason that this ad works well is that we have almost become cybernetic superhumans thanks to our smartphones, our intelligence and wayfinding skills vastly improved because of the small hunk of metal and glass in our hands. The concept of our cell phones guiding our every move and redirecting us when we fail to follow its guidance is so commonplace that a car manufacturer can tap into that idea in order to sell their products.
"Recalculating..." It's almost as ubiquitous as our cell phones.
But what does that have to do with the six letters that define my therapy, even if they don't define me? Well, just like encountering heavy traffic or making an unanticipated turn in the real world, my cancer treatment team can only predict so much about where I will go along my journey. And - like so many other things related to my diagnosis and treatment - irony is in full effect.
Let me explain.
I am on my last day of my chemoradiation. I've taken capecitabine for twenty-four days and received twenty-four out of a planned twenty-five fractions of radiation. I'm experiencing virtually no side effects other than the fully expected ones - a bit of post-radiotherapy tiredness, some mild changes in taste half an hour after taking my chemotherapy, some mild skin irritation and loss of hair where the radiation is beamed through my skin. The ones that would concern my oncology team - things like mouth sores (stomatitis), severe skin changes on my hands and feet, vomiting, diarrhea, or cardiovascular changes - have been completely absent.
"You're tolerating the capecitabine really well. That's why I'm going to change it when you are done with radiation."
That ironic statement came from my medical oncologist a few weeks ago.
Capecitabine - the oral chemotherapy agent that I have been taking under GIRCRT - is reserved for more frail patients or paradoxically for those that are having difficulty tolerating it you see. As long as they aren't having life-threatening adverse effects, these patients would persist on the oral therapy rather than move on to more aggressive therapy. Because I am healthy and tolerating the capecitabine well, I can probably tolerate this more aggressive therapy.
Yeah! Who loves irony?
But why would I expose myself to more aggressive drugs that are more toxic than the one I am currently taking? The answer is simple; the more aggressive my chemotherapy, the more likely it is that I will have a resultant cure.
I know I said that statistics don't matter when applied to the individual. I still believe that, both for me and for my patients. But I wouldn't be doing any of this if I didn't pay at least a little attention to statistics. I could have made that assumption after my colonoscopy, assuming that my gastroenterologist had collected all of the primary tumour (which, as it turns out, they did). I could have not undergone my lower anterior resection, secure in my belief that I would be one of the statistical non-conformers. But if I had done that, my surgeon would never have found the metastatic lymph node that wasn't visible on CT or MRI, and it would still be seeding adenocarcinoma into my bloodstream as I wandered the planet, assuming that I no longer had cancer.
Instead, I am choosing to assume that if I did nothing, I would have a recurrence of my cancer (even though this view is wildly uncharacteristic for my usually optimistic perspective). As such, if my medical team advocates for a therapy that will reduce this risk of recurrence, I will probably take it. I mean, there is a limit; I wouldn't undergo chemotherapy that made me violently ill if it only offered to extend my life a small amount, for example. But in this case, the more aggressive therapy offers me a greater chance of a cure, of living another thirty or forty or fifty years without ever having to say I have cancer.
Remember my decision about radiotherapy? That decreased my chance of a recurrence of my cancer by half, but only if I assumed that I would have a recurrence. If I assumed I wouldn't, it only serves to expose me to risk. This is much the same; if I stay with the same capecitabine therapy that I am on, there is a greater risk that somewhere out there in my body a metastatic process is starting that will result in more cancer in the next five years. So I will assume that this is the case - because I want to avoid this worst case scenario - and that alternatives that reduce my risk of that metastasis taking hold are warranted.
Not everyone facing the decisions that I am would make the same choice. I respect that and will support anyone in doing what they think is right for them. But this therapy is right for me, and because of that I will go through it even though I will likely experience greater side effects.
Short-term pain for long-term gain.
So... what is the proposed change?
Instead of six letters, my therapy will change to now be nine. That's 50% better, right? After I finish my 5 weeks of capecitabine and radiotherapy today, I will get four weeks off treatment and then change to GIRAJFFOX (GastroIntestinal Rectal AdJuvant Folinic Acid, Fluorouracil, and OXaliplatin). This is the 'gold standard' treatment for resected rectal cancer, the treatment upon which all other therapies are compared. I will go into more detail about what this regimen involves - adverse effects and the like - in another post. For now, let me give you a high-level overview of my recalculated route, with turn-by-turn directions following on later.
First off, this is IV (IntraVenous) therapy instead of oral therapy. In other words, instead of swallowing a handful of pills twice a day, these drugs will be infused into my veins. Fortunately I am not needle-phobic so the thought of being poked to get my therapy doesn't bother me. But this is where this first factor has a big Venn-diagram crossover with the second; I will receive GIRAJFFOX for 4 1/2 months. The risk of damaging my veins from repeated punctures every time I receive chemo is too great, so I will need to get a PICC (Peripherally-Inserted Central Catheter) to make the process easier on me and reduce the risk of damage to my veins.
One good thing about this new treatment is that I get one infusion of its three drugs every two weeks. I will go into the local treatment centre and sit in a comfortable chair while nurses infuse the oxaliplatin and folinic acid over two hours. Once those IV bags are empty, they will 'push' a bolus dose of fluorouracil into the catheter and then hook up a portable infusion device (in my case, a Baxter Intermate) that will infuse a larger dose of fluorouracil over the next 46 hours. I can then go home and live a (reasonably) normal life as this elastomeric ("stretchy") infusion device delivers the fluorouracil slowly into my bloodstream. Two days later the stretchy balloon in the Intermate will be empty and I can clamp off both sides of the IV line and disconnect the Intermate and go on with my life for the next twelve days before doing the whole thing all over again.
Simple, right?
Okay - full disclosure here: there are a lot more steps involved than this. But right now I'm just giving you an overview of the route, not telling you exactly which street I will turn on and exactly how many potholes I will hit on that street.
That's detail that can be saved for later.
For now, I'm hopeful that this is the last time I will hear recalculating in relation to my cancer journey. Unless it's because there is construction enroute to the cancer treatment centre, that is...
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