So, I’m back off vacation from the drugs. I started up again Monday. And I went to the Jewish yesterday. Here’s what I can tell you after 3 weeks off the drugs:
- The sore on my foot healed, which was the point. Carrie said my feet look good. My doctor said my foot looked good. So that worked.
- My tumour marker went way up. September, it was .8; October it was 17.1. This isn’t any thing to be worried about (and “may even just be some secretions” <–no idea what that means) but it does suggest the drug is effectively suppressing the processes by which my cancer cells grow and that without it, they will begin to party in most unfortunate ways.
- I gained a couple pounds. This is not a surprise. I lost my lactose intolerance, and was fully intent on enjoying pizzas, etc., while I could. Also I had my full appetite and no diarrhea for a month.
- My blood pressure dropped.
My other side effects also pretty much disappeared. No hand pain, no foot pain, no weirdo fatigue, and I could regulate my body temperature. IT WAS GREAT. How great? It was “Dear Tripadvisor: the beaches were perfectly calm and sandy and we had them all to ourselves and the food was amazing and different every day and oh my the sunsets and the staff at the resort all mysteriously spoke English and did I mention the pool and the gift shop. Five stars!” great.*
In fact, last night when I was suddenly, inexplicably hot, Carrie had to remind me that was a side effect of the drug (sometimes I’m hot, sometimes I’m cold). This Ellen Samuels piece on “sick and well time” came out last month and more or less exactly captured the experience for me. It was miraculous to be back in my “well body” for a few weeks, and I couldn’t even fathom some of the things I had been feeling only weeks before. The extra twist for me is now in that tumour marker number: when I feel better, I am sicker. When the cancer is under better control, I feel worse. Iatrogenesis: it will fuck with you.
I do not feel bad about going back on the drugs. I understand this is the deal, and in fact, there was a point in September where Carrie was suggesting things with cheese on them and I was like “nah, I’ve had enough.” It’s always hard for me to tell if I really get something emotionally (as opposed to intellectually) but in this case, I think I do.
Speaking of things I don’t feel as bad about as I should, let’s talk about Montreal’s code red (which puts us in semi-lockdown. So I’m at the Jewish yesterday for my bloods. First, the difference from last time: there is a private security guard directing traffic on the cancer floor. Here is a sentence I never in my life though I would type: I am so happy they hired a private security firm. There was just one guy, but he was well-trained, seemed to understand that he was working to help the nurses, and made an effort to put patients at ease, keep track of whose turn it was, etc. But when people got agitated, which started more or less the moment I got off the elevator (in point of fact, I couldn’t exit the elevator right away because of people just sort of standing where they shouldn’t have been), he organized people and was the person whose job it was to tell people what to do even if they didn’t want to hear it. Better him than the nurses. So that part is good. They still need more people working in the blood centre but there’s no place to put them.
But everyone is supposed to wear a mask the minute they walk into the Jewish. The. number. of. noses. I. saw. was. not. good. The minute they were past the entryway where you get checked, people were pulling out their noses. ON THE ELEVATOR IN A SMALL ENCLOSED SPACE. WTAF? People pulling off their masks to talk loudly to someone across the hall. Again, WTAF? This is so not cool! It’s a hospital! Staff are risking their lives to help you, have some basic consideration! Just because you’re old or have cancer doesn’t mean you don’t owe others some basic decency. I’m not usually a scold-people-on-social-media type but I am honestly beside myself about the level of disregard for others on display.
So if people can’t get it right in a hospital setting with clear instructions and staff everywhere modelling proper behaviour, it’s no wonder Montreal is going into semi-lockdown for the next 28 days. No social gatherings of any kind. Though apparently you can still go shopping (?) and children in schools don’t have to wear masks (?). You can get an on-the-spot fine $1000 ($1500 with “service fees”) for being out in the park with people not in your household. This is a drag, especially because I’ve been able to enjoy a few outdoor gatherings with people at a safe distance (though I also attended two events where people did not keep a safe distance–the temptation to be near people is strong, I get it) and outdoor band practice has been a wonderful consolation for not being able to play indoors. But I understand why it’s happening.
As a friend put it to me, “I do not get the problems white people have with masks.”
Some other tidbits:
- My oncologist is still optimistic about vaccines starting to be available in the spring, and thinks that not everyone will need to get it in order for it to be effective (this part I honestly do not understand, but am sharing since presumably he’s in the loop).
- I’ll be back to phone appointments for awhile
- We both expect my tumour marker to go back down now that I’m back on the drugs. Nobody is particularly worried.
*Your obligatory footnote: going off the drugs coincided with the ramp up of online teaching. Which was insanely hard. And coming off sabbatical is always an escape-velocity kind of thing. So it’s not that I wasn’t tired but it was a different kind of tired than fatigue. I asked Carrie about it and she said with the fatigue my personality recedes. When I was tired, I just acted sleepy. So there you go.