[I’m archiving this, originally posted on CaringBridge on March 14th]
Today I heard a loud, resounding nothing more on the PDL1 protein test even though it’s been over a week since the tissue sample was sent off for what is, as I understand, a quick test to do. I left a message for my doctor at MSK who called to nudge the pathologist again and…that’s it! There’s nothing else to do! I will continue to wait, a process that’s made its way out of “anxious tension” and into “close to unbearable.” It’s been 7 weeks tomorrow since I heard my diagnosis, 3 months since I first became concerned about the tumor (although admittedly waiting until after my Christmas travels to test it seemed reasonable when no one suspected it was cancer).
I can now feel pain from the tumors all the time. (Or rather, I feel the pain of them pressing on nerves.) It’s worst with the largest one–the original breast tumor that is about the size of an egg and palpably, measurably growing between doctors’ visits. I had minor shortness of breath for the first time today. Everyone agrees that this is an especially aggressive cancer given that it took only a few months to metastasize and is measurably growing all the time. Despite this, I’ve had to wait weeks for appointments for tests, 10-14 business days for results, and been faced with a medical system what won’t even schedule necessary appointments until conclusive test results (still cancer!) are received from others, meaning the time really mounts up. (This isn’t even touching on insurance questions.) I said in my previous post that I always imagined a cancer diagnosis would be treated like an emergency, maybe not with sirens but with a red tag on your file that says “urgent” and bumps you up the queue somehow. But it turns out that having cancer doesn’t actually make you that special, at least not to people who deal with it all the time.
I imagine this fills many of you with rage and, oh, me too!!! So. Much. Rage. And, especially if you’re a parent, you can imagine how my parents are feeling. But it’s hard to know where to direct that rage. I know that doctors are massively overworked and that, what’s more, doctors and nurses both have to maintain a certain distance from their job, and by extension their patients, in order to avoid compassion fatigue. Like Shirley MacLaine I want to burst into the pathology department–where doubtless they are all just about to run that protein assay–and scream at them that I can’t start chemo until they do and all I need is this one result to be able to stop this disease from growing and spreading throughout my body and they are not doing it fast enough dammit. It’s probably for that reason that there are so many layers of office staff to communicate through, so many people to just say “we don’t know yet.” And that is what they say. (For what it’s worth, I feel that MSK may be more susceptible to this than Dana-Farber, where they have clearly spent a lot of time and money focusing on the patients’ experience and wellbeing.)
So I’m stuck, waiting with this displaced rage and thrumming pain and constant anxiety. And I feel, of all things, guilty that I haven’t started chemo yet. When people reach out to offer sympathy or to inquire how things are going–both meant entirely as expressions of love and kindness–my first impulse is to apologize for being so behind! Perhaps this is symptomatic of being the perpetual straight-A student; I’m never behind on anything…how could I be behind when it counts for so much?
I was making this type of joke even before I knew the full extent of my bad news. “I’m usually so good at tests…how can I be doing so badly on all these?” “I’ve never been just average in my entire life…no wonder this is all so statistically unlikely.” “I’ve always hit developmental milestones early; this is just another instance of it.” And, as I said in my last post, “You have to read the fine print when you wish to be exceptional.”
Now, obviously humor is an important coping mechanism for me. For one thing, it’s absurd–absolutely ABSURD–that this should be something I have to go through. So I have to find ways to laugh at it. Humor is also a pretty big part of who I am so continuing to make jokes is also a way of holding on to my sense of self. But these are very particular jokes and they’re all about how I’m a high achiever and will, therefore, CRUSH THIS just like every other challenge in my life. But cancer isn’t a test, a college application, a dissertation, a performance review. And although it may help me feel strong to think of all the other things I’ve come through (and it does) there’s also a danger that I’ll start to feel that I’m “failing” if I’m not “achieving” enough with my cancer treatment. I have already fallen into this trap, blaming myself for the triple-negative status, the lack of androgen receptors, as though if I’d studied harder they would have been there. And that’s just plain wrong.
The response my body has, or doesn’t, to various drugs isn’t a thing I can control. My role is to work with my body to give it what it needs and, moreover, to endure. Enduring is what I actually need to succeed at–and be acknowledged for–and that may not look very much like (my) traditional idea of “success.” Success, to me, is making progress: doing something, producing something, being active. And a lot of my treatment is going to look like the opposite of that. I will sit around and let my body fight an invisible war. I will not be able to write or work to the same level as usual. But if I am around, whether I’m improving or not, that is a success. Because that is enduring.
And I’m enduring now. 7 weeks of waiting, knowing that you have cancer and that it is growing and spreading each day that passes, is enough to send many people into a meltdown. But I’ve continued to live my normal life as much as possible, continuing to work and socialize as usual (or even more, in the latter case, since I don’t know that I’ll have energy for it later). I don’t talk about my disease all the time, mainly because I don’t want to. (And also because I worry about becoming burdensome to friends but that’s a whole other post.)
I have often felt that I haven’t been “earning” the sympathy and good will that has been coming my way simply because I haven’t yet been hooked up to an IV. To me, that physical act is what’s brave because that’s progress. That’s success. But I’d like to try to change that idea–with your help–and to see enduring, even during times of less physical distress, as also being brave and also being worth remarking on, even celebrating.
I hope to have more news to share with you soon. But, until then, I endure.
I imagine this fills many of you with rage and, oh, me too!!! So. Much. Rage. And, especially if you’re a parent, you can imagine how my parents are feeling. But it’s hard to know where to direct that rage. I know that doctors are massively overworked and that, what’s more, doctors and nurses both have to maintain a certain distance from their job, and by extension their patients, in order to avoid compassion fatigue. Like Shirley MacLaine I want to burst into the pathology department–where doubtless they are all just about to run that protein assay–and scream at them that I can’t start chemo until they do and all I need is this one result to be able to stop this disease from growing and spreading throughout my body and they are not doing it fast enough dammit. It’s probably for that reason that there are so many layers of office staff to communicate through, so many people to just say “we don’t know yet.” And that is what they say. (For what it’s worth, I feel that MSK may be more susceptible to this than Dana-Farber, where they have clearly spent a lot of time and money focusing on the patients’ experience and wellbeing.)
So I’m stuck, waiting with this displaced rage and thrumming pain and constant anxiety. And I feel, of all things, guilty that I haven’t started chemo yet. When people reach out to offer sympathy or to inquire how things are going–both meant entirely as expressions of love and kindness–my first impulse is to apologize for being so behind! Perhaps this is symptomatic of being the perpetual straight-A student; I’m never behind on anything…how could I be behind when it counts for so much?
I was making this type of joke even before I knew the full extent of my bad news. “I’m usually so good at tests…how can I be doing so badly on all these?” “I’ve never been just average in my entire life…no wonder this is all so statistically unlikely.” “I’ve always hit developmental milestones early; this is just another instance of it.” And, as I said in my last post, “You have to read the fine print when you wish to be exceptional.”
Now, obviously humor is an important coping mechanism for me. For one thing, it’s absurd–absolutely ABSURD–that this should be something I have to go through. So I have to find ways to laugh at it. Humor is also a pretty big part of who I am so continuing to make jokes is also a way of holding on to my sense of self. But these are very particular jokes and they’re all about how I’m a high achiever and will, therefore, CRUSH THIS just like every other challenge in my life. But cancer isn’t a test, a college application, a dissertation, a performance review. And although it may help me feel strong to think of all the other things I’ve come through (and it does) there’s also a danger that I’ll start to feel that I’m “failing” if I’m not “achieving” enough with my cancer treatment. I have already fallen into this trap, blaming myself for the triple-negative status, the lack of androgen receptors, as though if I’d studied harder they would have been there. And that’s just plain wrong.
The response my body has, or doesn’t, to various drugs isn’t a thing I can control. My role is to work with my body to give it what it needs and, moreover, to endure. Enduring is what I actually need to succeed at–and be acknowledged for–and that may not look very much like (my) traditional idea of “success.” Success, to me, is making progress: doing something, producing something, being active. And a lot of my treatment is going to look like the opposite of that. I will sit around and let my body fight an invisible war. I will not be able to write or work to the same level as usual. But if I am around, whether I’m improving or not, that is a success. Because that is enduring.
And I’m enduring now. 7 weeks of waiting, knowing that you have cancer and that it is growing and spreading each day that passes, is enough to send many people into a meltdown. But I’ve continued to live my normal life as much as possible, continuing to work and socialize as usual (or even more, in the latter case, since I don’t know that I’ll have energy for it later). I don’t talk about my disease all the time, mainly because I don’t want to. (And also because I worry about becoming burdensome to friends but that’s a whole other post.)
I have often felt that I haven’t been “earning” the sympathy and good will that has been coming my way simply because I haven’t yet been hooked up to an IV. To me, that physical act is what’s brave because that’s progress. That’s success. But I’d like to try to change that idea–with your help–and to see enduring, even during times of less physical distress, as also being brave and also being worth remarking on, even celebrating.
I hope to have more news to share with you soon. But, until then, I endure.
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