Post-op 2nd surgery & beginning therapy

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!

Enough already!

Surprise! It turns out there was another tumor, or else a new one popped up. I've just returned home from a second surgery at Mt Sinai. This one more radical than the last. In the previous round Dr. Genden was able to rebuild my tongue using other parts of my tongue. Recovery was quick - I was working again by week 4. This time i am not so "lucky".

The latest go-round started with a positive result on my post-op PET scan in early March (surgery was in Nov. 2010) showing continuing activity on the right base of my tongue, where the original tumor was. Very briefly we considered waiting and getting another PET in a couple of months, in the hope it was a false positive. Then common sense quickly kicked in and we scheduled a follow-up biopsy with Dr. Genden. He took samples at three sites, 2 where radiation and surgery had been previously performed and one, seemingly at random, from a slightly more central part of my tongue base.

You guessed it! The new site showed what Dr. Genden called a "fragment", either a free-floating particle of cancer or a piece of another tumor. Surgery was scheduled immediately. That happened on Friday, March 25.

As I said, this surgery was more complicated. Dr. Genden found a wide flat tumor, which he removed, replacing part of the tongue with a graft from my leg. To get proper access he had to open my jaw down the middle, an option longtime fans of this blog will remember as one of the treament options offered early in my history, as an alternative to radiation. Now I've been able to have both!

I have a trach to help with breathing, because my new tongue is still very swollen and unmanageable. And it's back to my ol' pal the PEG tube for my daily 7 or 8 cans of Gevity liquid food replacement. Other than an itch from the trach it's not too bad. Swelling is diminishing. My face is starting to return to something of it's original shape. Betsy, Esther, friends and neighbors, relatives, collaegues -- everyone has been incredibly helpful and supportive through this difficult time. I thank you all.

On Thursday Betsy and I return to Mt. Sinai for post-op follow-up.