Thursday, June 7, 2018

I feel special, oh so special

My optometrist friend says I'm special.

This might sound like a compliment. But in my case I think it means that my system has been messed with so many times that I'm an oddity, that maybe all the chemotherapy skewed some test results that would be more clearcut with a "normal" person.

In particular he was referring to the visual field test that a glaucoma specialist gave me. The one where you click when you see a small oval light come on the screen. You do it one eye at a time. It is nerve-wracking, difficult to keep up. Last year when I went for the followup, she said I was fine. I was scheduled for a followup this second time in December but got so busy I had to reschedule. I forgot about it, and by the time another appointment became available, it was for next month.

When I saw my optometrist last week for an eye exam, I mentioned that I didn't have that appointment yet. He looked up the results and said there was a change. My pressure is good, but, he said, that doesn't mean I do not have glaucoma. See if you can follow that. This is when he said I was special. Meaning, it's unclear what the results mean. Chemotherapy has done such a number on my system that it could mean I have Martians living behind my eyes! (No, he didn't say that, it just came to me.) But he said to make sure to keep that appointment. And, then, mysteriously and unnervingly, he said, "You do yoga, right?" I said yes I did. "She might tell you not to do any more down dogs," he said.

For a little while after that I fretted. In the order of, first, no down dog? And second, glaucoma?

My mother had glaucoma, misdiagnosed by an ophthalmologist (and family friend) who said she had cataracts. By the time it was caught, she had lost some peripheral vision. And, especially since she was an artist, she was upset, angry and nervous. Drops kept it at bay, but she remained anxious about it. I have let it go for now, figuring that if I had badly flunked the test, they wouldn't keep me waiting for a July appointment.

In any case I am falling prey to fashion trends and getting larger glasses. I should have kept my old ones. Along with half of my old clothes. Those, however, would not fit...not because I have gained weight, but due to what graft vs. host disease has done to my skin. It is not actually my skin – it is my fascia. But the damage that occurred in that layer before I started ECP has pushed out the skin on my abdomen and, as previously stated, created ripples and bubbles that have stayed on despite the benefits of the light therapy for my overall movement and sense of well being.

Today at my appointment with the specialist in subcutaneous dermatology, I learned that I will keep on the every other week schedule for the foreseeable future. My skin has gotten softer, and they don't want to risk cutting back; when I tried every three weeks, I could feel that my skin was getting tighter. One of my compadres at the Kraft Family Blood Donor Center said it had made her muscles weaken, and I don't want that.

I showed her the divot that mysteriously appeared on my right thigh a few months ago. She prescribed an ointment to put into the middle. It will not work, however, without occlusion, meaning I will have to try to wrap my thigh in plastic wrap or some such thing.

My suspicion that I either had vampire bites or new squamous cell cancers of the skin proved wrong. I do have multiple hypertrophic actinic keratoses.  These come from sun exposure and, surprise, are another after effect of chemotherapy. The doctor did not seem concerned. She had a resident zap them, in other words, perform cryosurgery. I told my zapper that it's a good distraction when my regular dermatologist chats with me while she does freezes. So she told me about coming from her native Chicago for a Boston program that allows her to study and work at most of the area hospitals. I told her about my visit to Chicago, and before I knew it, we were done.

Neck, arms and face now have a red polka-dot effect. This should add interest to my appearance tonight when I attend the Dana-Farber volunteer appreciation dinner. It's my twelfth year with the One-to-One program, through which survivors who've been there provide support (on the phone) to those about to go through it. I figure it's the least I can do, and I enjoy doing it.

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