Illness Management 101: An Update

It’s been an eventful week in Cancerland, and a bit of a rollercoaster at that. On Monday I had a consult with an ENT in Charlottesville about my paralyzed vocal cord. This time Steve got to watch my larynx in action when the doctor threaded a camera through my nostrils and had me make “eeeee” and “oooooh” noises. Talk about knowing your partner intimately. The doctor confirmed that my left vocal cords weren’t moving, and that he thought an injection of Restylane would improve my vocal strength and swallowing. It was a relief to hear that. So we’re set to return for that procedure next week.

Tuesday I had another endoscopy and dilation. I wasn’t terribly surprised to learn that I had significant narrowing again, and they want me to return for another dilation within the next month. I was a bit freaked out when the doctor asked about the lymphedema and tightening in my chest and suggested that if it got to a point where I couldn’t get enough nutrition through, they could insert a feeding tube. What the what? I was relieved when my oncologist seemed puzzled by that suggestion and pretty much shrugged it off.

Trust me, Herry’s epiglottis is cuter than mine!

I had chemo and met with my oncologist on Wednesday. The good news is he scoffed at the prospect of a feeding tube. The somewhat less reassuring news is that I have some new nodules that have developed in or just under my skin. He noted that one thing they’re seeing with some of the new drugs is “slow spread.” Instead of the drugs halting the disease 100%, it’s maybe 98%. “And I want 100%,” he said. So he is currently investigating other options, including testing my possible responsiveness to another immunotherapy drug. He doesn’t plan to take me off the current targeted chemo unless or until he finds something else. But it’s disconcerting and anxiety-producing to see some disease progression.

Thursday was blissfully unscheduled. Friday I had a tele-consult to tweak some of my side effects medications, as well as an appointment for swallowing therapy. My speech therapist is kind and knowledgeable, and she’s focusing on myo-fascial release to get my larynx and epiglottis moving again. I’ve only had two appointments, but I do feel a difference each time. I’m hopeful that the combination of the therapy, dilation, and the vocal cord injection will get me back to swallowing with some normalcy again soon. In the meantime, I have a phone consult with a nutritionist on Monday to talk about how to be sure I’m getting enough nutrients. I’ve already discovered that it’s waaaay too easy to default to eating ice cream. 🙂

Kitties are always good medicine

If you’re thinking that all of this sounds like a lot, well, it is. Sometimes it feels like I have a part-time job in illness management. I’ve squeezed in some painting this week, lots of kitty cuddles, and a few really good naps. (Never underestimate the value of a good nap.) Steve and I are looking ahead to some forthcoming beach time, which always does a body good. I don’t really know what else to do except keep on keeping on, so–I’m keeping on.

I am excited to announce that I’ve been granted a guest artist spot at A New Leaf Gallery in Floyd, Virginia, in September and October. So I will definitely be working on new paintings and getting prints and cards made for that venture. It’s nice to have a creative goal to work toward, so I’m really grateful for the opportunity.

Now, I’m gonna go sit on my front porch and paint. Until next time.

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