So the most important news is that Carrie is here. I wake up several times a night to cough up phlegm in a fairly horrific sounding fashion. It was nice to feel a warm hand on my back as I was trying to hork (<–technical term) something up. And of course the apartment is lit up with her company. A big part of our relationship is constant ridiculous banter, and that’s lovely as a constant rather than something I get in a couple doses during the day. When we decided to live separately this year the mission I took for myself was to see what it was like living independently while chronically ill. Since I got sick with whatever THIS [gestures at own lungs] is, I’ve managed with the help of a lot of friends old and new, but I feel like the point has been made and it will be nice to depend on my spouse for awhile.
—
I have lots of doctoring news to report but no conclusive anything. I saw my pulmonologist on Thursday, who took lots of time with me. His latest thing is I am probably not having any kind of asthma attack, so we are going to try diuretics for three days to see if they help my breathing (WILL SUCK but that’s how empiricism works). In the absence of anything conclusive, he suggests that I stay on any meds that make me feel better, and drop any meds that make me feel worse. We are in the phase of “symptom management.” I’m also tapering off steroids which means I should hit rock bottom Tuesday or Wednesday when there are no more pills. That will be some dark night of the soul shit but that’s the deal one makes with prednisone.
Friday I met my new primary care doctor here, who is one of the only PCPs in my plan to also be an osteopath. She suggested wearing a heart monitor just to check if I’m going into afib. The current theory is that my afib in the hospital was related to the breathing, not the other way around, as all evidence suggests my heart is healthy. But it’s always possible they missed something. I have a referral to cardiology for that (she can’t prescribe directly) and I have a referral to speech therapy to work more on my swallowing. But the osteopath part was also great. She laid hands on me, and I felt considerably better after being adjusted. She also gave me a stretching exercise to do which has helped some.
Through the miracle of screenshots and email (and my permission to do it this way), doctors on both sides of the border can now compare stills of my CT scans from August and September. Interpretations are varied. The pulmonologist here says he sees no change in the cancer. Conversely, my oncologist in Montreal, with whom I spoke at length on Friday, is now concerned that the fluid that appeared in my lungs (and their current limited capacity) could represent some kind of progression of disease, though it would not represent a standard progression of disease. On Friday the 11th, I am going to see a local oncologist with expertise in my disease, and she will give her opinion. If they both agree, one option here is to change cancer treatments. If my diminished lung capacity is a result of the cancer somehow, the new drugs theoretically could make me feel better. Though there are some steps between here and there, both decision-wise and then insurance-wise. And there’s not a lot of certainty there either whether this will help my symptoms, which for the moment, is the thing I care most about.