Holding Pattern (original) (raw)

Just an update to let everyone know where things are at with my recovery.

No news is good news, right? Sort of. My last day of chemo and radiation was May 28. I knew at that time to expect that the side effects of chemo and radiation would increase for a few weeks before they gradually got better, but as usual with this strange process, it was hard to know (or for doctors to predict) what that would look like exactly for me. Everyone is different, and reacts in different ways to the same treatments.

As you know, I had opted to have a feeding tube installed just before the end of radiation, as eating had become too difficult. The irony of course was that while I needed the tube to get enough nutrition, the larger goal was to return to eating normal food orally in order to get back on the path to normal. So in a way I had two goals working against one another.

Then another wrinkle crept in: Soon after the tube was installed, I started feeling a lot of irritation around the site. It got worse, I went to the doctor, and they treated me for infection. But once the course of antibiotics was done, the site didn’t quiet down – in fact, it started feeling more gnarly by the day, until every footstep created scratching, scraping discomfort of the skin at the tube’s stoma. I knew this was not right.

Finally, on Tuesday, I was able to get it solved via telemedicine – after daily cleaning, I’m supposed to bathe a piece of cross-cut gauze in some sort of mild pain-relief and disinfectant cream (Paula brought me an excellent burn cream from France) and use it as a shield between the stoma (installation hole) and the rubber disc that prevents the rig from sliding into my stomach. Basically, I just needed a gentle protective barrier there at all times, and somehow hadn’t gotten the memo about that. Finally the mechanics of the feeding tube are no longer uncomfortable.

Meanwhile, I’ve tried to make some headway with eating orally. I am now able to eat:

But haven’t gotten further than that. It’s hard to articulate how or why, but most other foods cause a gag reaction the moment they’re in my mouth, or I start chewing. The cause, I’m pretty confident, is the fact that there’s still a ton of sunburned skin in my throat that is intermittently painful. So I keep seeing or smelling foods that scream “You could totally eat that!” but when I get the smallest bit in my mouth, they make me want to throw the bowl in the garbage and run away. Especially when I know that my feeding pole is right around the corner and I can get a full meal without hassle.

So I’m kind of in a limbo, waiting day to day for the sensitivity of sunburnt throat skin to calm down so I can advance the oral eating to something beyond the 1-yr-old stage. I do have one other thing lined up to try: A “pulse” of steroids that are designed to reduce inflammation in the throat, to hopefully allow me to eat without the gag reaction. I’ll be starting that shortly.

Blood Cell Count

On the exercise front, I had been able to maintain my 3-4 miles of hill hiking daily during chemo/radiation, but eventually I had lost enough weight that I started getting light headed and experiencing vertigo, and needing to take breaks. So I dialed way back for a while, to around 1 mile/day. Now that I’ve been tube feeding for a few weeks, my blood cell count is improving and the vertigo is dissipating. I’m still not up to normal levels, but definitely feeling healthier than a few weeks ago.

That’s about it – not out of the woods yet, wishing things were moving more quickly, but so incredibley grateful to be focused on recovery issues, not on the cancer itself.