Thursday, March 5, 2020

From a sunset on the beach to screaming pain on my lips

Scaffolding on the house
I went from watching a sunset on the beach to having a screaming pain around my lips. Waaaaaa.

It’s the second time it has happened. I applied a chemotherapy cream, 5-fluorouracil, combined with a synthetic form of vitamin Dcalled calcipotriol. It's a relatively new treatment for early skin cancers. Most people know the chemo cream by its trade name, Efudex. Someone in a Facebook group for Efudex users said the calcipotriol gives the former super powers. The purpose was to treat one squamous cell cancer on my temple and other pre-cancers, or actinic keratoses, on my face. It lights up the cancers and pre-cancers and burns them off. I put it all over my face, as instructed, because I didn’t know what was lurking. The sides of my lips went berserk. The left is worse than the right. It burns like crazy. The inflamed area extends onto my skin, creating the effect of a clown mouth.

From when it happened before, I had an anti-fungal cream. I’m not sure why that is supposed to work, but that is what I had. I put it on. By chance I had a checkup with my internist. She said to use a prescription antibiotic instead. I got it and put it on. Then, as directed, I sent a photo to the Mohs surgeon in Boston. He called back and said to use the anti fungal and not the antibiotic. Also he said I could add Vaseline. It might help to stop the chemo cream combination but he wants me to use it a few more days because the squamous cell cancer on my temple isn't red enough.

Man in the kitchen
I’m also treating my hands. This is frustrating. I have treated them before, they get better, and then the actinic keratoses come back. Some people won’t do it. I have a squamous cell cancer on my thumb, so I have to do it although I don’t have to do the full hand.

Today I’m going to Dana-Farber for the light therapy (ECP) and I’ll be interested in hearing what the people at the Kraft Family Blood Donor Center say.

Work on my house has been mostly on the outside, to get the structure safe. On the inside, it has been demolition but not construction. Today, a carpenter finally came and worked on putting the kitchen back together. He said it shouldn’t take too long. I may have this wrong, but I think that when reading Virginia Woolf’s The Waves, I was struck by how comforting she found the sound of the workmen to be. I have the opposite impression. The pounding and drilling gives me a headache. Sometimes I go and work elsewhere. It hasn’t seemed like enough progress. But when I went and looked around the outside, I saw that it really was coming along.

I was sure lucky that the tree hit the garage first.

You might think I wouldn’t consider myself lucky in general, given all the things that have happened to me, but of course luck is a matter of degree. For example, if I had gotten chronic myeloid leukemia (which doesn’t go away) instead of the acute kind, I would still be dealing with it to this day.

On the blog I have shared some of my posts for a site called Health-Union. Recently I wrote one about luck.

It began, “Nobody should say you’re lucky to get cancer, but luck is a matter of degree. For example, an acute myeloid leukemia (AML) patient like myself is lucky compared to one who got the blood cancer before stem cell transplants became common practice. In great part, we owe our survival to the so-called Father of Bone Marrow Transplantation, Harvard-trained researcher E. Donnall Thomas, who I wrote about in a piece on what it’s like to be a chimera, a person with two types of DNA.”

You can read the rest of the post here.

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