Sunday, June 26, 2016

Coming in for a landing

Blowing in the wind, Wellfleet
Dissonance: One day running around New York and seeing two shows, another on the beach with my hair blowing in the wind, and then back in the chair with a needle in my arm.

This all happened in a short period of time. The Cape Cod mini vacation ended Wednesday morning, when Katie and I drove to Logan Airport for her flight back to Minneapolis and I went straight to Dana-Farber for the light therapy treating my graft vs. host disease of the skin. But it was wonderful and restorative so I can't complain. Well, maybe a little because it was so short and when the planning and the thing itself is over, the inevitable letdown occurs. Think, First World Problem-itis.

I got to Dana-Farber early enough to go up to my old hang-out, 6A, one of the bone marrow transplant units at Brigham and Women's Hospital. Two of my favorite nurses were there. We gave each other big hugs. One got tears in her eyes when I showed her the photos of me and Nell. The aide who bathed me when I could barely move came over and talked to me about how sick I was. My tough-love nurse, Myra, wasn't there, and I said to send her my regards. We talked about how she had made me sit in my chair when all I wanted to do was get back to bed, and she had said, "You'll sit up and eat your lunch like a normal person." We talked about how when I relapsed the second time, I went straight to the sixth floor and asked Myra how I could go through it again, and she said, "You can have your pity party for an hour and then you'll put your boxing gloves on."

Race Point sunset
I also dropped in on a patient who had just had her bone marrow transplant. I am happy to be getting more patients to talk to through the One-to-One program in which patients who've been there talk to those going through it.

I'm more useful for people who are having a hard time or who have relapsed, and I guess that's not what patients were looking for. But recently I got three.

 If they ask directly for my story, I tell it to them, but if they don't, I gloss it over by saying a lot of stuff happened to me including relapse but Dana-Farber figured it out. I don't like to get into too many specifics because I understand the tendency for someone to think it might happen to them. On the positive side, of course, I'm alive and well so that is what I focus on.

I gave two tips to the patient the other day: During your year of dietary prohibitions, you can still eat fruit by cooking it up with lemon and cinnamon; technically called fruit compote but named fruit mush by my mother and me. I also told her that if she wanted eyebrows, she could order stencils on line.

I was pretty tired by the time I got to the Kraft Family Blood Donor Center, and I fell asleep almost as soon as the needle went in. A problem with going on vacation with my kids is that I always want to do one more thing on the day that we're leaving, while they consider it packing up day only.
So I got up super early Wednesday and did my one more thing, going to the Flying Fish for coffee and a muffin and then walking over Uncle Tim's Bridge and looking at the water.

When I woke up from my nap, on Wednesday, my nurse told me I was almost done. It was only 5 p.m. and not the usual 6:30, so I asked if she had done five cycles instead of the usual six. No, she said, it was the faster new machine. Some people are doing it even faster by getting a needle in each arm, but I couldn't tolerate it because my veins have been used so much that I need to alternate and rest one arm.

I didn't have to deal with any crazy drivers because the crazy driver was me. I didn't want to do any more driving in the same day so I stayed over at Margaret and Nick's for a nice dinner and got a fresh start the next day.

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