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.

Just when you thought it was safe to go back in the water...

Well, it's not over till it's over. Tumor is back in the same place and I'm going in for surgery today. Dr. Eric Genden of Mt Sinai in NYC will shortly go up through the lower right side of my jaw, remove lymph nodes and the tumor. He'll test surrounding areas for cancer, remove what's necessary, then graft skin from my right arm to replace what's been removed. 3-6 hours of surgery. 6-10 days in hospital. 4-6 weeks of recovery. Will have temporary tracheotomy, a feeding tube, again, and need to relearn swallowing and speaking. Should be fun. Stay tuned. Here we go......!!

32. 3 things!

1. Had an entire portion of microwaved frozen lasagna last night. And I could kind of taste it! That's the most I've eaten so far.
2. Went for a run this morning with the dog! (Probably because I ate that whole lasagna portion last night.) Short, slow but VERY satisfying! That's how I spell relief. Yahoo!
3. Saw Dr. Lee, my supervising physician, for the first time since midway into treatment. He put the scope thing up my nose and perused the tumor site. Nothing there that he could see. He also put his finger up there and didn't feel anything. So far so good. I am to go in for my PET scan in a month and I'll see him again in 2 months. My tongue is still swollen and my throat is raw. I'm supposed to gargle with salt water, use Biotene mouth wash and anti-fungal med that I swish in my mouth (tastes disgusting). He said to eat whatever I can. I should be feeling better and better.

How's that for good news?! More to come.

d

31. keeping on keeping on

I've been lax lately in updating my blog because not that much has been happening. Every day I seem to progress infinitesimally. Over the last few days I have consumed by mouth: half a piece of french toast, a scrambled egg, some chicken soup, clam chowder, lentils, egg salad with tuna, eggplant parm, and multiple milk shakes. It takes a while to eat and I can't taste much. I was able to taste some celery in the chicken soup and chocolate in the shake. Most of my nutrition, unfortunately, is still being delivered by tube. My tongue still kind of burns. My throat has moved from being in constant pain to something more akin to aggravation. I sleep better, although for some reason lately I've been waking up every hour or two. I'm still taking oxy-codone pretty regularly, especially at night, but try to space it out during day. I've gone for a couple walks in the woods and took the train into the city on Wednesday afternoon and even visited the office for a couple of hours, which was a welcome break. In all cases it took longer to recover than I expected. But at my weekly visits my doc confirms that I am improving in a timely manner. So I'll just sit tight and let my body do what it does.

From this point on, dear reader, assume that no news is good news (what a relief to say that!). I will, of course, post any milestones that are reached, ie: tasting for real, cessation of pain killers, PET scan results, etc. Thanks for keeping up with me through all of this!!

30. this just in...

At check up yesterday my mouth had finally cleared up enough for Dr. Zablow to reach in and feel the tumor site. He said that he couldn't feel any remnant of the tumor!!!

So far, so good!

29. prescription: tincture of time

At this point I'm playing a waiting game. I am improving VERY SLOWLY. Baby steps.

I still eat through a tube. My throat hurts. I choke. My tongue is swollen and burns, yet simultaneously feels numb.

But today I ate some cream of broccoli soup, by mouth! Although I couldn't taste it the consistency was acceptable for most of the bowl. I can take my pain meds orally again. I have more energy for longer stretches. I was able to spend time mending a bench in the back yard. My head feels clearer. When I accepted that I am not improving overnight I saw the light at the end of the tunnel. I have learned the lesson that everyone who completes similar treatments learns: patience.

I have been reading a novel called "Jeff in Venice, Death in Varanasi" by Geoff Dyer. In the Varanasi section the narrator observes that the residents of this part of India accept their lot in life without question. They don't expect things to change for the better, whether it's their health, their wealth, or their social status, because there is no way for that to happen. He contrasts this with those of us in "civilized countries" who suffer our pain with the knowledge that it's temporary. I have found, not surprisingly, that when I fear that a side effect might not go away I start panicking and experience it more acutely. When I am reassured that my discomort is temporary I relax and am better able to accept it. What must it be like for the folks in Varanasi? Are they more enlightened in their unconditional acceptance of suffering? Are they living in the moment? What about those victims of the Big C who cannot be cured but are able to manage their disease: are they like the Varansi in that they must accept what they cannot beat?

It will be another 5 or 6 weeks until the chemo and radiation have completely left my system. That's how long I have to wait until I can get my PET scan to determine if the cancer has been blown out of my body. I am optimistic, but I'm not going to assume anything. In the meantime my mantra is renewal. Day by day.