I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!
The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29th.
|Me with "bangs"|
Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.
I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.
On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.
At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment.
Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware.
My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.