I was hoping to write a longer, more thoughtful post about how heroism is boring, day to day, and how ill prepared we are for what it looks and feels like. And hopefully I will! But since I know that it's been a while since I've posted about how things are going, I thought I'd at least catch up those of you who don't follow me on Twitter.
The format makes it easier for me to write briefer updates there, but tonight I wrote more than Twitter usually likes to see about how I feel about my next chemo visit tomorrow (May 15th), which is my sixth on this (3rd) treatment course and the last before I get another set of scans. It's also the 3rd since quarantine began (I snuck one in on March 12th when I was still allowed a companion for the trip instead of chauffeurs). Here's my Twitter thread about it:
"I have chemo again tomorrow bc even though time is a construct I still have to go every 3 weeks. My emotions are all over the place. Most simply, I am tired & don’t want to go through this again. However, it’s some of my only human contact so I’m also oddly excited.
I don’t mean physical contact (which is minimal & as distant as possible) but sharing space w/another person in silent company. It’s an exceptional circumstance so friends will drive me or sit on my (9 ft) sofa. I want to weep with relief about it, but also I’m angry. (2/)
Why am I angry? Well, first we all are. This situation is outrageous, unbearable, & yet we must bear it. Second, I live with & suffer from cancer all the time not just every 3 weeks. I’m wracked with guilt & sadness about how much I need my people around me yet cannot ask. 3/)
I want them to make exceptions for me more than once or twice every 3 weeks. I don’t want to ask, though, bc many of them feel stressed by compromising even this much. They cry when they tell me they wish they could be here or, if they are, that wish they could hug me. (4/)
I have to talk my parents (80 & 76 w/an underlying condition) out of traveling to be with me & suspect & worry they will do it anyway. Of the 504 hours in 3 weeks I spend conservatively 480 alone (& I’m awake for probably 350 of them). It’s unsustainable, unbearable. (5/)
This is what I’m doing to help stop the spread. Living by myself w/stage 4 cancer, working FT, spending 160 hrs a week alone, excited for chemo so I won’t be. I’m angry that more is not offered me. But I’m furious that others don’t have more perspective on their own suffering.6/)
I have been doing this for 9 weeks. 9 weeks is more time in my lifespan than it is for most of yours. Do not take away another 3 months, 6 months, a year or two from me. I do not have that much spare time. I know it is unbearable, but please bear it a bit longer. (7/)
But also: if you do see me (or anyone) walking with a friend or sitting together in the sun, do not assume we are being irresponsible because we are young or because one of us has purple hair. You have no idea what people are bearing in private. Be cautious, but be kind. (fin)"
These past few weeks have felt strained for me too. Mostly I've been doing what everyone has been doing and just trying to get by, enjoying the sunshine when we have it (although it's been spitefully cold and rainy for spring), reading and watching TV, throwing myself into work (especially if it benefits other people), and burning myself out on video calls seeking connection.
When I'm at my least generous, I resent other people (including those I know and love) for only having to endure quarantine itself, or for getting to endure it with someone who loves them and whom they love. I resent the idea of the nuclear family that sanctions a group of 4 seeing one another in one instance, but which makes my friends (living in 1s and 2s and also isolating) feel that they cannot see me. I resent the idea of couplehood that makes me feel that what I'm enduring is somehow a just punishment for my singledom (already viewed as a defect). I feel these resentments, but then I remember to be kind, which is the braver and better thing.
But it cannot be denied that going through this with cancer, as I do every moment of every day not just when I have chemo, is worse than doing it without cancer. If I am quiet on here, or bad replying to texts, or not able to do another Zoom call, it may be because the situation is quite literally exhausting me. It is taking me longer to bounce back from chemo sessions than it used to (now a full week) and I am not able to tell whether that is because of the cumulative effects of the chemo drug (which I was warned about) or because of the psychological drag of the quarantine. I also now find that I can't even really talk on the phone after chemo--that my energy levels are so depleted that only the comfort of having another person around physically works for those worst couple days. It's hard to have the capabilities of your body cut you off from what might be psychologically nourishing.
When I'm at my least generous, I resent other people (including those I know and love) for only having to endure quarantine itself, or for getting to endure it with someone who loves them and whom they love. I resent the idea of the nuclear family that sanctions a group of 4 seeing one another in one instance, but which makes my friends (living in 1s and 2s and also isolating) feel that they cannot see me. I resent the idea of couplehood that makes me feel that what I'm enduring is somehow a just punishment for my singledom (already viewed as a defect). I feel these resentments, but then I remember to be kind, which is the braver and better thing.
But it cannot be denied that going through this with cancer, as I do every moment of every day not just when I have chemo, is worse than doing it without cancer. If I am quiet on here, or bad replying to texts, or not able to do another Zoom call, it may be because the situation is quite literally exhausting me. It is taking me longer to bounce back from chemo sessions than it used to (now a full week) and I am not able to tell whether that is because of the cumulative effects of the chemo drug (which I was warned about) or because of the psychological drag of the quarantine. I also now find that I can't even really talk on the phone after chemo--that my energy levels are so depleted that only the comfort of having another person around physically works for those worst couple days. It's hard to have the capabilities of your body cut you off from what might be psychologically nourishing.
Thank you, though, for all the good wishes and messages you send from afar (which, now, is nearly anywhere). They absolutely make a difference, as I check my phone repeatedly and incessantly to make sure that, really, I'm not as alone as I may feel. I hope that you are doing as well as you can be doing too, and that you are finding comforts where you can.
Love,
Rebecca
