It’s been a week so here is a check-in.
Things have been pretty rough on the symptom/side-effect front. I did have friends in town this weekend and got to see them a couple times, which was very nice.
I’ve been coughing up lots of blood and/or bloody phlegm (a known side effect of several of the drugs I’m on), and had a lot of congestion in my chest and throat. On Thursday’s visit to the cancer center, my nurse practitioner listened to my lungs and said the congestion was probably in the upper chest, not lungs, which was confirmed by an x-ray. I’m now nebulizing albuterol 2-4 times a day, which seems to be helping. I’m also pausing baby aspirin and trying to avoid Advil, which I’d been using to (unsuccessfully) help manage fevers. The NP asked me “who prescribed baby aspirin?” and I had to answer “you did.” I think it was as a precaution to prevent a stroke from afib? I’m on metropolol and may or may not have afib at this point–my heart rate feels relatively well controlled.
It is really hard to keep track of all the drugs and their interactions. I keep a list that I edit as needed. This week I’m pausing montelukast, an asthma med that I may not need with the albuterol, and which lists “difficulty swallowing” among its side effects, to see if I feel any different. I feel like there’s just a lot of body experimentation to do–trial and error to see what works, because what worked before is no longer a good guide. Speaking of which….
The cough has also been messing with my sleep. I’d wake up around 3am and cough terribly for an hour or two. It’s simple gravity: if there’s a bunch of crap in my lungs and I’m laying down, it’s going to creep up on me. Eventually–I can’t say exactly when–I started going out to the recliner in the living room for the last few hours of sleep. The last two nights I’ve experimented just sleeping in the recliner. 3 hours vs 9-10 is a whole different proposition for my body — it’s not a new recliner and doesn’t have amazing back support and I had to figure out how to position my neck. But after two nights of experimentation, it’s an option if it’s needed. Starting tonight, I am going to try the bed again, this time with two foam wedges (one 15 degrees, one 25, for 40 degrees total) and have blankets and pillow ready to go in the living room if I need to crawl out to the recliner in the middle of the night. We will see how this goes. Sleeping in a recliner feels like “giving up” to me in some way. I’m sure people with COPD or other respiratory ailments do it all the time, but I really love the bed (I have a rare rental with a Very Comfortable Bed) and don’t want to give it up.
After fighting a losing battle with fever last week, I went into the “prednisone protocol” on Friday, which involves stopping the cancer drugs for five days and taking — you guessed it — prednisone. Friday I noticed no improvement but I might have puked it out in the morning. Hard to tell. But this weekend I definitely feel like I’m on steroids, and as of yesterday, my temperatures were back in the normal range. Wednesday morning I go back on my cancer meds.
Friday I had my spinal scan. Hoping that turns up no new news. My remaining scans (CT chest, MRI brain) are a week from Tuesday.
This Tuesday I see an ENT physician’s assistant, which will be for my swallowing / throat burning / vomiting issues. We will see what they come up with, if anything. I realize my problem is that my condition transcends specialties — it’s probably a mix of throat issues, stomach issues, and cancer meds.
There’s a post to be made about being “in my body” and self-experimentation, but I’m not there yet. In the meantime, wish me luck-: with scans, sleeping, fevers, blood/phlegm, and balancing meds. More news as it happens, or in a few days’ time.