Hello friends,
I'll post with the actual news I receive on this too, but wanted to say that I'm going in for my second set of CT scans on this latest treatment tomorrow (3/12). For some reason, I'm much more overwhelmed with anxiety (or "scanxiety") than usual. It could be that, in December, I had total faith that the treatment I was doing would be better than the basically nothing that the previous one had done. It's not hard to show improvement on a result when the result is so negative. I was also distracted by the fact that days later I was set to travel home to the welcome prospect of seeing my parents and being able to cope with whatever happened in the arms of people who loved me. (And also I was distracted by my beloved cat, Percy, who I could tell was dying at the time and whose health honestly took mental priority over mine. I got good scan news on December 18th and he died on the 24th so I think it was the right call.)
Now, though, I've been through another four treatment cycles (8 infusions over 12 weeks) and haven't had dramatic signs of anything changing the way I did when my hair immediately started falling out. And while I in no way miss the large and terrifying primary tumor that I had removed in July, it did serve as a reliable indicator of whether treatments were working or not. since I could quite literally feel it getting larger or smaller (usually larger) over each passing day. Now, the distant cancer sites are all invisible. All my tumors, as of December, were under 1cm. That's a huge change, considering that the final size of the primary tumor was 12cm. I'm glad not to be able to see them and glad the relative size is so small. But it leaves me completely unable to tell if anything has changed or not. The side effects aren't useful in this way either, since despite what I might feel about my hair loss they're actually not correlated with effectiveness.
It's an unfamiliar position for me to have so little to go on from my own body and it's leaving me rattled by uncertainty. I've swung between optimism--and there is a basis for it--and terror. The same things that make the outlook good for tomorrow, like the overall effectiveness of this treatment in trials and the fact that it's the only targeted drug for triple-negative breast cancer, make the prospect of a bad scan result even more terrifying. This treatment is not my last option. But it's my last really good option. (Although, yes, I agree that the "good" option is whichever one works. It's all about how likely that is.) I want to believe that good things are possible with it, but as soon as I do I tend to panic. This is essentially the same way I have been feeling about the covid vaccinations and promise of some return to normalcy (or a new version of it - I'm firmly of the belief that everything is profoundly changed so I don't even like the term).
I think the intensity of my anxiety this time is about more than cancer and has to do with having these scans at this particular time in the pandemic. Social media constantly reminds us we are at the one year mark. March 11th was the last day I spent in the office, not knowing it was my last, although the rest of my coworkers were there on the 12th while I was at chemo. (I'm experienced with painful anniversaries and I urge you to get a cake for this one because at least then you are sad and shaken but with cake.) Unlike most people, though, I'm incredibly familiar with my life changing suddenly, profoundly, and for the worse. I do not (and won't) write about it here but the end of my marriage was traumatic and also characterized by abrupt changes that could not be reversed. That was in 2017-18. After that, I had my cancer diagnosis in 2019. And then the pandemic. Each case was one of loss, grief, and ultimately resilience. Each time I have made of my life what I can, but it's always been in the context of deprivation and pain. So when I contemplate news, or a change, a big part of me cannot imagine that it will be good.
It's unexpectedly hard to open yourself up to hope. Hope is terrifying because it relies on vulnerability. And we who have been repeatedly wounded over the past year, whose hope became so faint that it was just a dim glow, are skittish and suspicious, understandably inclined to jealously guard what we have left. Will you spend some of your supply of hope believing in something better? I ask myself this every time I approach my scans, and now each day when I read about the pandemic.
I have had my first vaccine shot. I don't want to go into how hard it was to get an appointment. All I can say is that the only reason I succeeded at all was because I am fortunate to be part of a caring and proactive community (or several!) who pulled together to work on my behalf. It should absolutely not have been that difficult and we need to do better. But. It does mean that soon (the day before my 37th birthday) I will get a 2nd shot have as much immunity to covid as it's possible for me to have. Soon I will know the results of these scans. Maybe they will be good. Can I risk hope? Can you?
There's an episode of "Buffy the Vampire Slayer" (it always comes back to that, doesn't it?) set on an alternate timeline where Buffy never came to Sunnydale. It's as bad as you would expect, in fact Buffy herself dies in that world, as do all the characters we've come to love. At the end, it's Giles who reverses the spell by breaking an amulet. "As he prepares to smash it the villain (who will later become one of the Scooby gang, but that's neither here nor there) tries to stop him by asking, "How do you know the other world is any better than this?". He replies simply, "Because it has to be."
This is how I have felt, to this point. What comes next must be better. Because it has to be. I'm scared to hope, but this same capacity for hope is the thing that has sustained me. If you're also feeling this tension, and also suffering from the pain that comes from having numb optimism reawaken like a useless limb, you are not alone.
I hope we will talk to one another about the difficulties, as well as the positive things, about making a recovery from this severe trauma we have collectively suffered. And I hope we can have compassion for people like me, who are finding it somewhat hard to hope in the midst of all that has happened. It is worth practicing and I will do so--about tomorrow and about the pandemic--but I admit my fears and doubts as well and hope that some of you will feel free to do the same.
I will share news with you when I'm able.
Love,
Rebecca
