Since my last post, I’d say I’m living in a split reality. Every day there’s a little progress or something fun, but also every day some new fucking thing as the new chemo works its way through my body. When starting on lenvima I had a rule that a side effect wasn’t real if it didn’t last a week. I still have the rule but things are a little different because I am starting out on the maximum dose of dabrafebib and trametenib, rather than ramping up from a lower dose, as I did with lenvantinib. I know I’ve complained about over-aggressive American medicine in previous posts but in this case, I’ll take it. When I went on, I was sicker than I’d ever been in my life, by far. And I am still more beaten down, at least in terms of what my lungs can do, than at any other point in my life. And lungs are IMPORTANT for a lot of things.
I’m also still learning how to live my life while attached to supplemental oxygen. I’m hoping that part isn’t permanent, but if it’s temporary it could still last weeks or months, so I might do it as well as possible while I’m on it.
And I’m still learning how to work with/around my limited swallowing.
On the plus side of the leger:
Thanks to a foam wedge and some angling, a less productive cough and codeine cough syrup, I am now mostly sleeping through the night except for whatever interruptions occur (see below).
Yesterday we took an Uber to the suburbs for a scheduled meeting to get tested to see if I could use a pulsed oxygen regulator. Normally, an oxygen tank just delivers a constant flow of oxygen whether you’re breathing it in or not. A pulsed regulator is triggered by your breathing, which makes a portable tank last a LOT longer. The good news is I passed the test and took well to it yesterday, which bodes well for socializing outside the apartment, and eventually going into work when my physical endurance is up and my side effects are a bit more under control. I even cranked it up and walked up stairs with it when we got back to the apartment and it seemed ok.
(The trip was a bit of an adventure — we’d gotten two confirmation calls on Friday for the appointment. Carrie likes to be early, so we’re there at 9:30 for a 10am appointment and it’s a totally deserted office park in the middle of the suburbs. The place is closed and locked. So is everywhere else. No place to wait or sit, Uber driver is long gone. We sat a shivered on some concrete stairs as the wind cut through us. I swear I hallucinated tumbleweed. Finally, at about 10:05 a woman responds to Carrie’s plaintive knocking and is very cranky with her. Turns out the appointment wasn’t conveyed to the shop. She changed her vibe and was very helpful to both of us, we got everything we needed, it was all good.)
We ordered pizza yesterday for lunch and I ate two pieces of pizza, minus edge crusts, which are still a little too hard to break down into swallowable form–you can guess how I figured that out.
The PT exercises are working. It’s considerably easier for me to stand up than it was a week ago. I still get winded doing the most random things and in general move very slowly, but I’ll take any sign of progress right now.
Side effect improvement: no cyclical vomiting since I started the prophylactic ondansetron (Zofran). I have single-puked a couple things (see: attempt to eat edge crust above) but it just came out and was over, which is good enough for me.
Visits from friends.
Popsicles. I have never loved them so much.
Lots of wonderful notes from people. I owe so many people messages back. Sorry!
Napping. Friday I had a visit from a home care nurse, and we expected that I was going to be drained. That process is not exactly painful but is extremely uncomfortable and can turn into painful cramps, so I’d been advised to take prophylactic dilauded in advance. I wound up not being drained (see why below) and so was basically stoned for the day at 11:30am. We thought I might have to go in to the hospital to have the site looked at, which is happening tomorrow. But it meant there was a lot of waiting around. These two factors led to a lot of napping in the recliner, with the sun beaming into the apartment on my face, which was really nice. I am sleeping a lot at night but the extra sleep during the day is clearly not hurting either.
Lymphatic massage (and putting my feet up). When I came home from the hospital my feet were so swollen they couldn’t fit in any of my shoes. Now they can! There’s still excess water down there but we’re getting it out.
New Fucking Things (aka symptomology):
The most shocking was the fever and chills, which is a known and common side effect. Yesterday I took a nap in the recliner while Carrie was out for a walk with a friend. I was fine when I laid down. I woke up about 5 minutes before she got home and was shivering so much I literally couldn’t do anything else, like move or put on something warm. Temp was 101.9. But it was seriously beyond somehow–I don’t think I’ve ever experienced truly debilitating chills before.
I had had chills earlier in the day and took Tylenol and thought “oh haha, chills!” That’ll show me.
With Carrie’s help I got more Tylenol into me, and was summarily bundled up and put into the bed with pretty much every available blanket in the apartment on top of me. Two hours later my fever was breaking and I was pouring sweat. Then, at 2:40am (standard time, not daylight savings), I awoke shivering, but at least this time all the infrastructure was set up for the cycle. I’ve been trying to keep myself on max Tylenol dosage ever since but I still have a bit of a headache and some nausea comes and goes. Definitely on the agenda for the appointment at the cancer centre tomorrow.
The night before, I awoke at 5am, unable to breathe because my nose was completely blocked. I could breathe fine through my mouth, but oxygen comes via nasal cannula only. I’m on several drugs that dry me out, make me thirsty, etc. I tried everything I could think of, culminating with walking into the bathroom, turning on the shower, and just sitting on the toilet and breathing in the steam, which resulted in a spectacular nosebleed out both nostrils. Just an absolute flood. We added a humidifier to the oxygen compressor, and I’ve maxed out the humidification on my CPAP, and last night was better. Fingers crossed that that was a one-time deal. We will discuss decongestant options with the NP on Monday.
I switched my chemo dosage to 2 hours after meals instead of 1 hour before. I’m able to eat a little more, though once I start taking the pills, heartburn and lack of appetite kick in.
I’m not getting much drainage out of my PleurX but there is swelling around the site and it looks gross. I’ll have it looked at on Monday.