The post-op with Dr. Genden went as well as could be expected. He said I'm making good progress but since it was a big surgery it will take time to heal. In fact, my next appointment with him isn't for 8 weeks. He explained that the fragment that he biopsied turned out to be part of a tumor. Although it wasn't big - just 1.5cm - it was located centrally in my tongue base which is where the main muscle that drives the tongue is located. Rebuilding this area was complicated and is why he had to take such a large piece from my thigh. He was able to save the nerve which runs along the left side of my tongue which is critical, since I lost the one on the right to the first tumor. He is optimistic about my prospects of being able to swallow again with therapy, although it is unclear how much ability I'll regain or how long it will take. I can speak a bit now, although it is pretty thick. This also should improve with therapy. And it looks like I will be able to lose my tracheotomy in time, but for now I have to keep it in case my airway gets blocked.
Last week I had my first swallowing therapy session. However, since my throat is still too swollen to swallow I learned some exercises for my mouth and tongue: opening my mouth as wide as possible, moving tongue from side to side and up. 10 reps, 3 times a day. This will take time too, my tongue doesn't move much yet. But it's good to have something to do that will lead to improvement.
I guess the hardest thing about this newest phase of treatment is how slow recovery is going. Initially I could see the external swelling coming down every day. But I've reached a plateau now and changes are tiny. Sometimes I seem to be able to swallow my own spit, other times not. The therapist confirmed that improvement doesn't happen in nice orderly way. She said it's up and down and up and down. Luckily, my leg doesn't hurt much, it's more numb than anything and walking is not a problem. I have begun taking a stroll pretty much every day and that is a pleasure!
Overall I'm doing pretty well. I think I'll be able to go into work a couple of partial days this week. I am doing my best to stay positive but there are times I can't help but wonder if I'll ever eat again. If not, I imagine it's something you get used to. In time I would hope I'll be able to hike, camp, bike, exercise, etc. But it certainly makes me realize how much a part of daily life eating and drinking are, not only for sustenance but for pleasure and socialization. I never really thought myself a "live to eat" kind of guy, but I do miss it! And beer. Even the cat's food is starting to look good!
Sometimes I wake up in the morning and think to myself, "it's time for this movie to end and things to go back to normal." Up to now in my treatment that's happened, even if it took a little while. I'm sure I will regain some normalcy again eventually, although it's clear that it will take a lot more work this time.
When I was younger I felt that I needed to have some serious "life lessons" to understand my place in the world. Now that I'm having them I am not sure that I have any better understanding. Perhaps it takes a while to digest. One thing I do know: enjoy what you've got when you've got it!
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Thanks for sharing the details Dave - and reminding me about the blog. I sure wish I could do something to end the movie - but the best I can do is offer my love and support. Your strength through all of this has been inspiring - I don't know that I would be so graceful. See you on the 14th.
ReplyDeleteDave I've been thinking about you. You seem very brave to me. eDave
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