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:
- Cream of Wheat
- Yogurt
- A scrambled egg
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.
Thanks for the update Scott!! You are so strong and awesome!
Thank you Helen!
So happy for your upward trend, and that you were able to figure out your feeding tube pain. Grateful for your coping attitude and bright-shining spirit.
Thanks for the support and the good vibes, Temmo.
♥️
Back atcha Shirin!
The twists and turns in determining who’s who. I salute your problem solving!!
Hang in there Scott, hope the bounce back comes soon!
Thanks Jason – Here’s to More Bounce to the Ounce.
That is all very good news!
Feeling very grateful! Thank you.
Keep on truckin’! One day at a time. One spoonful at a time!
Hell yes! Just picturing the R. Crumb sketch brings a smile to my face :)
The struggle is real. Having watched this with my mom, it is a slow journey back to normal. It is good that your time only “eating” via the PEG tube was pretty short. You won’t have learn to eat all over again — like a 1 year old.
And you’ve still got a full head of hair!
I am absolutely lucky that my course is so much easier than it is for others. I wonder how long people are usually on the tube? I’ve been on for about a month, and expect it will take around another month to get off of it. Is that wishful thinking? How long did it take for your mom?
I’ve been thinking of you and the fam, Unk, and following along. You’re so strong and resilient- I’m so happy chemo is wrapping up and you’re not in the thick of it ♥️ Love you
Thanks for the love and support Roya – much appreciated!
Woof, thanks for sharing and I’m so sorry for everything you’re going through. I’m glad you’re making so much progress and I hope the throat sunburn eases soon.
Thanks Stephen! All positive vibrations are very much welcome.
Scot- Thanks for sharing with such curiosity, honesty and humor. You’ll be my model when I get my new hip on 6/26!
Oh! Congrats on the new hip in advance – that’s a huge deal. Hope the recovery is smooth.
Scot,
I’m sorry you had to go through that with the feeding tube. I hope your eating pattern improves vastly, so you can eventually get rid of it. Keep on Truckin.’ I’m thinking of you.
Susan
Thank you Susan. I’m relishing small improvements day by day. Ate some fish and rice today, very appreciative!
Im rereading this on the 23rd, eager, I guess, for further improvement. And I see it in your latest reply to Susan! What an exercise in patience and trust! I guess taking good care of that throat, giving it the right amount of time to fully heal, is the right course. And thank g-d for good, soft, and palatable nutritious foods. So happy you’re on the upward side, albeit slowly, Scot!
Thanks Bessie – Day by day, inch by inch, a little bit better all the time. Making really nice strides now, in fact! I’ll have to post another update on that before long. Thanks for the support!
Wow, Scot, I can totally see you pushing through your regular hiking routine during treatment, but I was still a bit surprised to read it. I’m glad that you’re taking it a little easier right now – so great that you’re listening to your body. I hope it’s enough to still keep your spirits up and that you’ll be back to your routine as soon as possible!
I feel that I need to do an even better job of listening than I have been. Something instinctively felt like I could recover by pushing, but I increasingly realize I need to recover by resting, just resting.