[This was originally posted on CaringBridge on April 3]
Hi all,
I’ve been pretty absent on the updates front because, well, there hasn’t been very much to update you on until now. The headline is that yesterday I had my first chemotherapy session so I can finally, finally begin to kill off these cancer cells!! The treatment ended up being IV chemo with a different agent than the one initially prescribed (which was capecitabine): paclitaxel. It has a different menu of side effects and, I’m sorry to report, I will no longer be set up to lose my fingerprints and begin a life of crime. (Although maybe that’s JUST what I would say if I were about to embark on a life of crime?)
It’s more time-intensive, since I’ll be going for half a day at the hospital every week for 3 weeks (and then one week of to let toxicity reduce). I had it today and so far haven’t had any adverse reactions except fatigue, headache, and dry mouth. So…kind of like a hangover? This is an agent that builds up, though, so this week days 3 and 4 (Thursday and Friday) are likely to be worse. The later weeks are too, which makes sense from a cumulative drug. Why the change? Well, once I learned that my PDL1 negativity excluded me from the clinical trial I needed to get set up with an oncologist here in Princeton. My Boston doctor, who I liked so much, will still be supervising big-picture treatment plans, but all the treatment and assessment will be under the care of my person here. The two of them disagreed about which agent to start me on–the rationale for the first being that it was minimally invasive, the rationale for the second being that it’s the standard treatment and would make me eligible for more future clinical trials. You can see why we made our conclusion!
It’s more than a little frustrating if I think too hard about the fact that today, nearly 9 weeks after my diagnosis, I ended up doing exactly what they would first have suggested exactly where I would have started it. But the confidence in it as the right choice and the kind of informed decisions I was able to make because of the hard work we all did are worth that they call “peace of mind.”
It let me do a couple other things, too, including occupy a liminal space between being diagnosed with cancer and being a “cancer patient.” To me the second term was a label implying something much more active–someone had stuck me with a needle, given me a pill, sent my cancer cells running for cover from a destructive agent–while with the former I was “just” running around to different hospitals and imaging centers, including ones in New York and Boston, changing into hospital gowns, drinking contrast liquids, being stuck full of IVs, and run through tubes for various amounts of time. Now, why I thought that was “easier” or “didn’t count” as “treatment” is interesting, and probably something I’ll return to, but I can promise you that it had to do with the kind of irrevocable change that it I felt it would make the be treated for cancer instead of simply finding out facts about it. The latter was an investigation, a fact-finding mission like any good general would perform before a plan of attack. The first made me a strategist about my own body. The second made it subsume me. (Or, that’s what I worry will happen.)
When I teach Milton’s Paradise Lost (secretly my favorite classroom text even though I’m a Shakespearean) I talk about the differences in the poem that are fundamental, unbridgeable, and sometimes even inexplicable to the characters. Mostly notably, differences between fallen and unfallen (most beautifully and movingly in the scene where Eve has fallen but Adam hasn’t) and the difference between Creator and created (which is one of the reasons God isn’t a sympathetic character…how could you sympathize when you’re so different?). The difference, to me, between “cancer patient” and “normal person with diagnosis” was one of these. And now I’ve crossed it. And although it’s frightening, as will be every step where I display a new signal of my status to the world (hair loss, fatigue, not being able to be in crowded spaces), it is also a relief. I can say it and I can be it.
So here I am, in the world, proudly being a cancer patient, trying to show myself (including my face) on social media just as unhealthily often as I did in “normal” life. Because I don’t actually want the divide between “normal"and "cancer patient” to be as stark as it felt it was or as stark as those lines in Paradise Lost. This is going to be the hardest thing I have EVER done–harder than getting a PhD, harder than getting divorced, harder than finding an academic job–but is also the most crucial and therefore the biggest part of who I am….for a while. But it will neither always be the most salient fact about me nor ever be the extent of who I am. And I don’t want any of us to forget that.
Of course I envy people who do not have to be cancer patients. No one would willingly choose this. I feel worried and protective of them too, though, because they might not know that the world can come out of nowhere and throw them for a loop; that very bad things can happen for no reason. And so I want to talk to them about it anyway, not to tell them how lucky they are but so that I let them in close to this, the most important fact about me right now. I am chosen. But I am not alone.
Now: if any of you thought that was a setup for me to talk about how I’m about to rewatch Buffy and you should all join me…all I can say yes, yes, you’re absolutely right. It’s a show that has already helped me through the hardest of times on more than one occasion. It has to do with self-definition and self-assertion; with struggling with unfair burdens but finding support and solace in friendships; with trying to live a “normal” life with a daily fight for your life (and the continued existence of the world, which luckily I don’t have to take charge of) in the background. It’s perfect for me right now and if you’d like to explore and read about it with me I’ll be sharing details soon about the logistics.
For tonight, though, take a sec to mark this transition with me. I’m a cancer patient. And, as this initial dose works its way through my body, we can say that that girl is poison. And cancer cells had better watch out.
I’ve been pretty absent on the updates front because, well, there hasn’t been very much to update you on until now. The headline is that yesterday I had my first chemotherapy session so I can finally, finally begin to kill off these cancer cells!! The treatment ended up being IV chemo with a different agent than the one initially prescribed (which was capecitabine): paclitaxel. It has a different menu of side effects and, I’m sorry to report, I will no longer be set up to lose my fingerprints and begin a life of crime. (Although maybe that’s JUST what I would say if I were about to embark on a life of crime?)
It’s more time-intensive, since I’ll be going for half a day at the hospital every week for 3 weeks (and then one week of to let toxicity reduce). I had it today and so far haven’t had any adverse reactions except fatigue, headache, and dry mouth. So…kind of like a hangover? This is an agent that builds up, though, so this week days 3 and 4 (Thursday and Friday) are likely to be worse. The later weeks are too, which makes sense from a cumulative drug. Why the change? Well, once I learned that my PDL1 negativity excluded me from the clinical trial I needed to get set up with an oncologist here in Princeton. My Boston doctor, who I liked so much, will still be supervising big-picture treatment plans, but all the treatment and assessment will be under the care of my person here. The two of them disagreed about which agent to start me on–the rationale for the first being that it was minimally invasive, the rationale for the second being that it’s the standard treatment and would make me eligible for more future clinical trials. You can see why we made our conclusion!
It’s more than a little frustrating if I think too hard about the fact that today, nearly 9 weeks after my diagnosis, I ended up doing exactly what they would first have suggested exactly where I would have started it. But the confidence in it as the right choice and the kind of informed decisions I was able to make because of the hard work we all did are worth that they call “peace of mind.”
It let me do a couple other things, too, including occupy a liminal space between being diagnosed with cancer and being a “cancer patient.” To me the second term was a label implying something much more active–someone had stuck me with a needle, given me a pill, sent my cancer cells running for cover from a destructive agent–while with the former I was “just” running around to different hospitals and imaging centers, including ones in New York and Boston, changing into hospital gowns, drinking contrast liquids, being stuck full of IVs, and run through tubes for various amounts of time. Now, why I thought that was “easier” or “didn’t count” as “treatment” is interesting, and probably something I’ll return to, but I can promise you that it had to do with the kind of irrevocable change that it I felt it would make the be treated for cancer instead of simply finding out facts about it. The latter was an investigation, a fact-finding mission like any good general would perform before a plan of attack. The first made me a strategist about my own body. The second made it subsume me. (Or, that’s what I worry will happen.)
When I teach Milton’s Paradise Lost (secretly my favorite classroom text even though I’m a Shakespearean) I talk about the differences in the poem that are fundamental, unbridgeable, and sometimes even inexplicable to the characters. Mostly notably, differences between fallen and unfallen (most beautifully and movingly in the scene where Eve has fallen but Adam hasn’t) and the difference between Creator and created (which is one of the reasons God isn’t a sympathetic character…how could you sympathize when you’re so different?). The difference, to me, between “cancer patient” and “normal person with diagnosis” was one of these. And now I’ve crossed it. And although it’s frightening, as will be every step where I display a new signal of my status to the world (hair loss, fatigue, not being able to be in crowded spaces), it is also a relief. I can say it and I can be it.
So here I am, in the world, proudly being a cancer patient, trying to show myself (including my face) on social media just as unhealthily often as I did in “normal” life. Because I don’t actually want the divide between “normal"and "cancer patient” to be as stark as it felt it was or as stark as those lines in Paradise Lost. This is going to be the hardest thing I have EVER done–harder than getting a PhD, harder than getting divorced, harder than finding an academic job–but is also the most crucial and therefore the biggest part of who I am….for a while. But it will neither always be the most salient fact about me nor ever be the extent of who I am. And I don’t want any of us to forget that.
Of course I envy people who do not have to be cancer patients. No one would willingly choose this. I feel worried and protective of them too, though, because they might not know that the world can come out of nowhere and throw them for a loop; that very bad things can happen for no reason. And so I want to talk to them about it anyway, not to tell them how lucky they are but so that I let them in close to this, the most important fact about me right now. I am chosen. But I am not alone.
Now: if any of you thought that was a setup for me to talk about how I’m about to rewatch Buffy and you should all join me…all I can say yes, yes, you’re absolutely right. It’s a show that has already helped me through the hardest of times on more than one occasion. It has to do with self-definition and self-assertion; with struggling with unfair burdens but finding support and solace in friendships; with trying to live a “normal” life with a daily fight for your life (and the continued existence of the world, which luckily I don’t have to take charge of) in the background. It’s perfect for me right now and if you’d like to explore and read about it with me I’ll be sharing details soon about the logistics.
For tonight, though, take a sec to mark this transition with me. I’m a cancer patient. And, as this initial dose works its way through my body, we can say that that girl is poison. And cancer cells had better watch out.
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