When I posted on Tuesday I did not think it was a good news / bad news situation, but here we are. Yesterday the MRI results came back and there is cancer in my brain.
The nodules are small, so I am not in any immediate danger. And as far as I know, I am asymptomatic. [But yes, I am absolutely going to blame every mistake and bad behaviour on my brain mets from now on. “It’s not me, it’s just my passengers.”]
But there are a bunch of them. The plan for the next six weeks or so is “watch and wait.” I’ll have another scan at the end of that period and we will see if the cancer is growing, shrinking, or staying the same. It’s possible it will react to the medication I’m already on, in which case, I am all set for now.
Of course, it’s also possible it won’t. We discussed options, which do exist, but are of the more medieval variety than the ultra modern “here’s a pill that targets your exact genetic version” I’ve been working with. More on those later once I know more. We are meeting with a radiation oncologist on Monday.
—
So how are we feeling? Not good! It’s my brain, which is up there with my lungs as a candidate for #1 on any top-10 list of my favourite internal organs. The news, which was delivered professionally and with compassion, really did feel like a punch in the gut. We had about 48 hours of feeling hopeful and now we are back in a land of uncertainty and danger. In our second and third appointments, the social worker and I got “into it” so I have a good cancer therapist while I’m here. Nevertheless, Carrie and I are both still pretty stunned. It was not the expected news at all, and not news anyone wants to receive.
—
This would be a good time to remind readers of things I do and don’t want; and of the circle of care. Cancer in brains is scary for anyone, especially intellectuals, and it’s normal to have a strong reaction to scary news.
Tl;dr: nothing has changed since my last post in terms of the kind of help and support that I need (and do not need or want) right now or the kinds of interactions I want to have with people.
My last post and some social conversations have already yielded volunteers for hauling things upstairs, which has been really heartwarming. People step right up when asked. There will be a few other things on my spreadsheet, and I’m confident I’ll get the help here I need in the short term.
In terms of how to interact with me, I would like to enjoy life as much as possible. I’ve got six weeks until I learn much more about my brain. I don’t mind talking about my condition or my feelings but I don’t want it to be the only thing I talk about. It’s not interesting or fun to repeat the same stuff over and over. We could be talking about your life, ideas, music, gossip, cats, sports, or anything else.
Messages of solidarity and support, checking in, and pictures of cute animals are always welcome. I like to hear good news from other people as well. Somehow there was this moment where terminally online people weren’t supposed to share good news because bad things were happening to other people. That moment was ridiculous. I blame Xitter.
I can’t respond to all of them in a timely manner, so please cut me some slack there.
—
I don’t know where I learned the circle of care, and it’s a hokey concept, but here goes:
The patient is at the centre, with intimate caregivers (like Carrie) in the first ring (honestly, based on years of disability studies reading, I think the caregivers are in the ring with the patient),
Then close family and friends in the second ring , and on and on, ring by ring.
One gives emotional support to the people in the rings to the inside of where one is positioned, and one receives emotional support from the rings outside of where one is positioned.
Care and emotional support goes inward, processing your own feelings goes outward.