Eye See Warmth in my Future   December 20th, 2011

I have had a number of folks write me to ask if all was okay since I’ve not posted anything here in the last several weeks.

For now, I will ask you to assume, for future reference, that no news is good news.

The reason I had not written anything is that whole-brain radiation is singularly unexciting, but it does wear one out. It significantly increased my fatigue and reduced my appetite. I ended up losing another seven pounds making me even skinnier than before.

Fortunately the whole brain radiation is over with since last Thursday, and I will have another brain MRI in early February once the brain has healed to see how things are going. There’s no reason to expect things not to look good then since whole brain radiation is a common treatment for the tiny tumors and bleeding I had. And my energy levels are slowly returning to their pre- brain radiation levels and the same goes for my appetite.

And being home next week on Bonaire will only improve my health, I am sure.

One of the interesting side effects of the TIL/TBI treatment I had in early October was that later in the month I noticed that my distance vision had deteriorated but my near vision had improved. When I asked my doctors about this, they had not heard of this being a side-effect and recommended that I go to an optometrist to get my eyes checked. We did that a few days later at Lenscrafters. The optometrist took the following retinal images. If you look at the right image, you see a dark blob near the center. This is called a chorodial nevus (scientific name for a freckle in the eye). The optometrist, taking my recent history of melanoma into account flagged this as something to have my oncologist look at more closely, just in case.

My left retina image

My left retina image

My right retina image - note the freckle below and to the right of center

My right retina image - note the freckle below and to the right of center

Yesterday I had a follow-up on a freckle on the back of my right retina at Massachusetts Eye and Ear, and got a clean bill of health on the nevus (woohoo!) They took new photos for reference, and I have a follow-up in late March to make sure it continues to look good. One interesting thing the doctor said yesterday was that the freckle looked like it was turning white on the edges – a condition known as vitiligo, where pigmented skin cells lose their pigmentation. Apparently vitiligo is not uncommon in people who have undergone TIL treatment and I have found a few other external places on my body where it appears (including, believe it or not, the tips of all ten of my toes.

Jake with dilated pupils and new facial hair growth

Jake with dilated pupils and new facial hair growth

As a footnote to the whole vision thing, this past Sunday morning I discovered that I once again needed reading glasses to read the newspaper and that my distance vision was back to normal (20/20) and this was confirmed at the eye doctor’s yesterday too. Go figure.

So, you may be asking yourself “what’s next?”

In the short term there’s a high likelihood that I will lose all the hard-won stubble on the top of my head again as a result of the whole brain radiation treatment, but I’ll get to keep the fur on the upper lip and chin (see image above).

And shortly thereafter I expect to be warm and sweating on Bonaire enjoying a nice time at my home with family and friends. We are awaiting a Turducken here in Boston tomorrow that we plan on bringing to Bonaire with us to feast on for Christmas with a few friends.

We get back to Boston in early January (we’ll be bringing our Antarctic jackets and hats with us from storage there so we can survive the bitter cold that is still likely to face us in Boston). I have scans and a consultation with my oncologist planned for the second week of January, which will hopefully confirm what physical touch is still confirming in my thigh, namely that the TIL cells are still attacking my cancer cells and as well as preventing new growth.

I would expect my next post to be in the middle of January. Until then, no news is good news.