Eating Well and Touching Myself   November 5th, 2011

Okay, so maybe the title is a bit provocative, but enough time has gone by, with enough changes, that I thought I should post an update.

On the recovery side of things, while I am still not at full energy, I do find that my energy levels are going up by a tiny bit every day, and in fact, I’ve not had a daytime nap in a week. I am making sure not to overdo things, but every other day I go for a pretty long (and slow) walk to rebuild my strength and stamina.

The dry mouth is still here, with some days better than others, and my foods still need to be well lubricated (sauce is good!) or moist for me to be able to consume them.

More importantly, my taste buds are healing, and I’m able to taste more and more foods. I still find myself very sensitive to very tart (acidic) ingredients as well as spice (of the chili variety), but am now able to manage most normal foods and enjoy them reasonably well. Black pepper is fine now too. For example, in the last week, we’ve had Indian, Thai, and Chinese foods, and I’ve been able to eat all but the spicy dishes. Plus, of course, the fabulous creativity of Linda and Krystyana have been a key component as well. For example, last night they made 40 clove chicken (I only had one garlic clove, but two large drumsticks with the lemon garlic sauce the chicken was braised in).

I know I am still quite far from getting the full flavor of dishes and foods, but that will all come in time. And considering where I am now, relative to where I was just three weeks ago, it’s a huge world of difference already.

So, onto the “touching myself” aspect of this post…

When I was starting my TIL/TBI treatment at the National Cancer Institute in Bethesda at the beginning of October, I had a number of very palpable melanoma tumors in my right thigh, and the area the tumors for the TIL harvest had come from felt like someone had buried a baseball in my thigh – it was rigid with small lumps around it as well.

Flash forward to the present, and I can only feel (by touching myself – get it?) just one of the smaller tumors (there were over a half dozen) in my thigh, and the baseball shaped mound in my thigh has gotten quite soft as well. Considering that my weight is down to a svelte 200 pounds (down from 225 when I started treatment) – meaning I have lost quite a bit of weight, which should have made the tumors more pronounced if they were not shrinking, this suggests that some aspect of the treatment is working, and working much more quickly than expected. It’s not clear whether the IL-2 or TIL cells (or the combination thereof) are the cause, but either way, Linda and I are pretty jazzed by these rather noticeable early result. We haven’t said anything publicly sooner (although we noticed the tumors becoming less palpable over a week ago) because we wanted to be sure that trend was continuing (and it is). My doctor did tell me last week (after getting my excellent blood work results), that I continue to be ahead of the curve. So here’s to being an overachiever with a type-A personality!

We’re expecting that the scans coming up this next week at the National Cancer Institute will give us some further insight as to what’s happening internally, but outward appearances suggest that I am slowly heading towards NED. And that means being able to going back to living at home on Bonaire on a more permanent basis once again down the road. Woo hoo!