Health Update #13: 2 Weeks Post Chemoimmunotherapy


It's been 2 weeks since my first chemo-immuno therapy session. There's just no way to prepare anyone for how awful this is. I have a lot of respect for others who've gone through this, and their caretakers who've borne witness and held space with them. It's a lot just to manage the medication and linens and bedclothes and meals and water and watching the pounds melt away. I've now dropped about 30 pounds, 10 pounds in the last 2 weeks.

Generally, the first week, once the steroids wore off, I was sleeping 20 hours a day, nauseous, and fell a couple times from dizziness. This lasted through Monday of last week.  In the early part of last week, the side effects from the infusion seemed to taper off, but then they came back in a wave on Thursday after a PT session to work my arm. 

I seemed to backslide with the fatigue and joint discomfort. By Friday, I had a pretty severe rash on both elbows, and light rashes on my knees, chest, and back, as well as some radiation burns. I also started running a temperature of 1 to 4 degrees.

My BP is normal and my glucose levels haven't spiked, but I'm out of breath with very little movement such as standing up or walking to the bathroom. I regularly experience faintness or lightheadedness when getting up suddenly from a lying or sitting position. Over the weekend, my joints (esp. knees) were burning up to the point that I started icing down my knees, elbows, and shoulders, along with some shivering and headaches. I have mouth sores and experienced a loss of appetite, though it seems to have come back a bit now. My voice is quite raspy at this point. 

I checked in with Palliative Care and Tim had some helpful suggestions and prescriptions for some of the symptoms

All of this largely put me back in bed, though I was able to load up in the van on Friday to drive down to Michiana for Corrine's birthday with the kids. We had a fabulous AirBnB with a hot tub/lap pool and they were able to go out to Granor Farm for dinner while I hung back. But I was able to sit up for periods of time to try to appear social. 

I have one more week to rest up before the next session and hopefully I'll be better prepared for what's in store. Greg Granger is going to brave a 15 hour Amtrak ride to Chicago to help out some there after that session. I won't be very social, but it'll be comforting to have the company. And nice to shift from rural Michigan to urban Illinois for a bit. 

How I'm Feeling





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