Honestly, when the best news that you have to share is, “It turns out, I didn’t have a stroke, probably!” it’s not been the best week.
The whole thing probably started at the end of September. That’s when I had my last brain MRI. There’s this thing that every cancer survivor knows about called “scanxiety,” and that’s the feeling of unease that comes over you when you have to be scanned for new signs of cancer. My usual way of dealing with scans is to dissociate and tell myself that there isn’t anything there that wasn’t there before, but for some reason I was extra uneasy about this round of scans because it had been too long since I had gotten bad news–not especially functional, I know. Anyway, when the nurse from my oncologist’s clinic called and wanted to set up an appointment to talk in early October, it didn’t come as a big surprise. The scan, it turned out, showed a new tumor in my cerebellum and two tiny, tiny tumors in my brain stem, where you really don’t want tumors, apparently. The good news is that there are some excellent developments in radiation therapy, and now we have radiation robots that are as good as surgery, offering cyber-knife and gamma-knife, if only one’s long-suffering husband and friends are willing to drive one to Hamilton for the treatment. What a time to be alive! And so that is how I found myself in Hamilton for treatment the week before last.
The picture above shows the scene that awaited me when I got off the elevator on the second floor of the Juravinski Cancer Centre in Hamilton. I do not recommend sending any patients to a place that has a big sign that says, “Supportive Care.” For one thing, as a doctor friend pointed out, all care should be supportive. For another thing, for me, “supportive care,” is a euphemism for palliative care. But the doctor was young and enthusiastic. I quickly agreed to come back for the new scan and the appointment to have my face fitted in a new plastic mask to keep my head still during the radiation treatment.
And so I was scheduled for 4 radiation treatments. I did 3 that last week of October, and I felt pretty terrible each time, coming home to moulder on the couch and watch tv. The radiation technician assured me that I shouldn’t be feeling symptoms so quickly, and it must all be in my head. Now, I’ve gotten through a lot by just breathing deep and shutting my eyes–going under for surgeries, countless IV placements, MRIs and CTs, accessing my port-a-cath with a big old needle, spinal taps, etc–but that moment of waking up from a nap to find myself face-to-face with a big radiation gun pointed at my face was up there with the weirder of moments. It probably wasn’t pointed at my face as much as it was pointed at my brain stem, but still.
I had a normalish Saturday and then collapsed on the floor on Sunday morning. I had been feeling weird and went to go lie down on the couch. Next thing I knew, I was on the floor, and The Historian was trying to help me up, having hit my head and lost consciousness on the way down. I helpfully said, “Nwaaa! Nwa! Ma jouwnawu!” R helped me onto the couch, which I was clutching at and told me to look at him, but I couldn’t keep my eyes open. I was hot and cold at the same time and clutching at my fleece. La Neige held my hand while R called the ambulance because I couldn’t walk to the car. The Prophet hovered anxiously for a while and then disappeared. In just a few minutes the ambulance arrived and the paramedics decided to take me to the hospital across town with the excellent neurological ward. I got to be on the stroke protocol! They tried to put an IV in in the ambulance, failed thanks to my tiny veins, and plopped me into the CT when I got there a few minutes later. It turns out that the CT was not conclusive, and I had to stick around for the MRI. The symptoms I was feeling were not to out of the ordinary for someone getting high doses of radiation to a sensitive and small part of the brain, but they were not typical or a best-case scenario, either.
This was the beginning of 2-3 days in hospital. It wasn’t so bad, but I did have doctors and nurses coming around on a regular basis to assess my progress. I had double vision and slurred speech. The speech pathologist put me on a special diet because my swallowing was not great. I could not read or speak or drink tea – OMG, who was I, even?
R brought the kids to visit every evening, and that was nice. In fact, their cuddles made everything better, as you can imagine it would. On Tuesday evening of last week I got to go home. My parents were kind enough to drive up on Monday, and did everything they could to take care of the kids and make sure that I was comfortable. I am mostly better, although I can’t read much and my speech still sounds pretty terrible. I went home on increased steroids, and the MRI seems to show that I did not have a stroke, so, again, great.
It’s been a tough week for all of us, and I am still shaky from all of it. I went to see my medical oncologist yesterday, and he assured me that I am in the best hands that I can be, so I went back to Hamilton today to get my last dose of radiation. That was tough, I even came home with my radiation mask as a souvenir.
I cried in the parking lot and even during my last radiation session, after the technician assured me that crying would not get in the way of the radiation. Now, probably at least half of you who have managed to read this far are thinking, “You’re allowed to cry every day, if you want to!” But it’s a funny thing, it doesn’t actually make me feel better, so I don’t do it all that often. It’s just all so much to put my family and friends and body through. It feels like this is not supposed to be our lives right now. It reminds me of The Bright Hour, the memoir by Nina Riggs about her experience with breast cancer. I’ve written before about how comforting her beautiful prose is for capturing this difficult experience and her amazing attempts to be herself through all of the horror of it, but there is something else, too. And that is the feelings of sadness, of shock. of betrayal, that lurk beneath the surface as you read. She doesn’t come out and say it, but it’s a difficult road to be on, and not one easily put into words.