[I’m archiving this, originally posted on CaringBridge on March 20th.]
Hello friends,
Although it’s late, I wanted to let you know that I did at last hear about the PDL1 results and, unfortunately, I don’t have the protein. This means no clinical trial and no new FDA-approved combination therapy. It puts me right, smack back where I was 7 weeks ago when I was first diagnosed: preparing to get single-agent chemo. The difference, though, is that at least now I have every confidence that this is the best option, that I have done everything possible and explored every angle. And that security is worth a lot.
Although it’s late, I wanted to let you know that I did at last hear about the PDL1 results and, unfortunately, I don’t have the protein. This means no clinical trial and no new FDA-approved combination therapy. It puts me right, smack back where I was 7 weeks ago when I was first diagnosed: preparing to get single-agent chemo. The difference, though, is that at least now I have every confidence that this is the best option, that I have done everything possible and explored every angle. And that security is worth a lot.
In my quest to shoot the moon on test results, I also found out from genetic testing that I don’t have any germline mutations (the heritable ones like BRCA), knocking out some other known treatment options. What I have truly is my own genetic mutation, a ticking time bomb that went off and proliferated itself all over very rapidly. Intellectually, I’m fascinated by how unusual it is. Emotionally, I’m terrified because this cancer has been so unlikely, so weird, so uncooperative so far that I feel irrationally sure that it will not respond to treatment. I have no rational reason to believe this, of course. It’s just fear. I’m very afraid of where things will go from here.
One quirk of cancer discussions is that when the disease worsens–moves someplace else in your body or grows instead of shrinks in a tumor–they call it “progressing.” Since “progress” is usually such a positive term I have to pause and correct my expectations every time I hear it. And that change in subject (it’s the disease that is progressing, not me) and the accompanying confusion, seems so appropriate to me for the way that cancer can take over who I am, how it can have all the agency and leave me entirely passive (as a body to make progress through…or not, hopefully). But I’m still here and I am changing (if not “progressing”) quite a bit myself.
There is a broader risk that the question doctors must ask–is the cancer progressing or is it not?–somehow replaces the question of what’s happening with me as a person. If progress is the thing to be stopped what does that mean about how I’m supposed to grow, change, and understand myself as these weeks go by? I can’t halt my own development or send myself back to a time before I knew I had cancer. I ought not to conflate all my worth or “progress” on whether a chemotherapy agent is successful in killing rogue cells. So I do want to take stock of my own development separately, and to track the shift in the way I think about things, which I’ll spend some time on here doing.
It is a cliche (and a hashtag) to say that I’m “more than cancer” and as a phrase it has always seemed faintly ridiculous to me because of course people are more than their diagnosis–why is that even something that needs to be said?! But as the disease edges out other things in my life I suppose it will be harder to keep that distinction, especially as cancer finds its way into my life in new and varied ways. I’ve already been surprised at the bonds it can forge from unexpected places –an unanticipated good thing to come out of a horrible situation–and gratified by the way it’s brought me closer to many of the wonderful people in my life. I know that it will also continue to change the character of my emotions and relationships in ways I can’t predict.
The unpredictability of it all–of the progress the disease might make or that I might make–is what keeps me in a constant state of fear and anxiety. But at least the uncertainty of treatment is past. I’ll be starting next week, once the approval comes through on an oral chemotherapy agent (capecitabine), which was described to me as “relatively tolerable”… even though one website I found listed “loss of fingerprints” under “more common” symptoms.
One quirk of cancer discussions is that when the disease worsens–moves someplace else in your body or grows instead of shrinks in a tumor–they call it “progressing.” Since “progress” is usually such a positive term I have to pause and correct my expectations every time I hear it. And that change in subject (it’s the disease that is progressing, not me) and the accompanying confusion, seems so appropriate to me for the way that cancer can take over who I am, how it can have all the agency and leave me entirely passive (as a body to make progress through…or not, hopefully). But I’m still here and I am changing (if not “progressing”) quite a bit myself.
There is a broader risk that the question doctors must ask–is the cancer progressing or is it not?–somehow replaces the question of what’s happening with me as a person. If progress is the thing to be stopped what does that mean about how I’m supposed to grow, change, and understand myself as these weeks go by? I can’t halt my own development or send myself back to a time before I knew I had cancer. I ought not to conflate all my worth or “progress” on whether a chemotherapy agent is successful in killing rogue cells. So I do want to take stock of my own development separately, and to track the shift in the way I think about things, which I’ll spend some time on here doing.
It is a cliche (and a hashtag) to say that I’m “more than cancer” and as a phrase it has always seemed faintly ridiculous to me because of course people are more than their diagnosis–why is that even something that needs to be said?! But as the disease edges out other things in my life I suppose it will be harder to keep that distinction, especially as cancer finds its way into my life in new and varied ways. I’ve already been surprised at the bonds it can forge from unexpected places –an unanticipated good thing to come out of a horrible situation–and gratified by the way it’s brought me closer to many of the wonderful people in my life. I know that it will also continue to change the character of my emotions and relationships in ways I can’t predict.
The unpredictability of it all–of the progress the disease might make or that I might make–is what keeps me in a constant state of fear and anxiety. But at least the uncertainty of treatment is past. I’ll be starting next week, once the approval comes through on an oral chemotherapy agent (capecitabine), which was described to me as “relatively tolerable”… even though one website I found listed “loss of fingerprints” under “more common” symptoms.
So, perhaps my own progress will be into a life of crime now that I will, apparently, be able to avoid detection!
Thank you for being here with me and for all the support and affirmation you are sending. I see it all and it always helps.
Much love.
Much love.
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