Saturday, January 25, 2020

Visit brightens up a cloudy day

If I was writing a weather story at the paper, I would have to come up with something better than this, but since it's my blog, I'm gonna just go for it and say a visit from Ben and kids brightened up a cloudy day. 

We had a little something to eat, played and read books, then visited the Odyssey Bookshop and the Thirsty Mind. Maddie came also because she didn't want to be left out. 

Gotta save the bookstores!

Two-year-old Callen walked in and said, "It's so beautiful."

The moment was precious. And it is beautiful.

We went downstairs and played some more and bought a few books. They have a great area for kids. In the picture, Nell is looking at her "Frozen 2" book.

When we stood at the door waving goodbye back at my house, I had visions of my parents, in the driveway at Atlantic Beach, waving goodbye when I drove off with the kids after a visit. And now my baby has his own. They are so sweet, if I do say so myself.

You can't see it, but a piece chipped off one of my front teeth. I put off calling the dentist but finally made an appointment. I don't have dental insurance because what I had was useless, doing me no good when I needed a lot of work during the period of the toothache from hell. I'm afraid I'm going to need more than a quick repair because those teeth are on the verge of disintegrating. 

I am doing the blood treatment, aka the light therapy, aka ECP for GVHD, or extracorporeal photopheresis for graft vs. host disease of the skin, every three weeks now, instead of every two. My skin seems to be behaving in terms of not tightening back up. Though not behaving because I have Mohs surgery coming up in early February on a few spots near my temple and one on the back of my neck. The one on the back of my neck feels long. I hope I don't end up with a hole in my neck the way I ended up with a hole in my ankle, closed up with the skin graft from my my side.

The drivers to Boston have been fine, but the ride home on Thursday wasn't. At 8 p.m., when we were almost home, the driver got off at Exit 8 instead of 7. I asked why and he said dispatcher said to pull into the Shell Station. We waited in the dark. The driver didn't know why . The dispatcher drove in behind us and poked his head in and attached a transponder that it turned out driver didn’t have. Then he asked the driver if he wanted a shift for tomorrow. I said can’t you talk about that later? the dispatcher said, Is there a problem or something? 

It was unclear why dispatchers of companies that drive patients don’t understand why patients might have a problem. The driver was very apologetic and I said it wasn't his fault.

In other news, I wrote about survivorship plans: why they are important and why I'm sorry I missed that boat. 

I started by saying I felt funny saying anything negative about the cancer center where I was treated. 
Of course the cancer center is the Dana-Farber Cancer Institute. And feeling "funny" doesn't exactly describe it. It's more awkward, or guilty. But the truth is, I had a wonderful social worker (Mary Lou Hackett) who got taken away, despite my entreaties, during a reorganization. I don't know what I or my family would have done without her. On paper I have a social worker now, but I only saw her once or twice and asked not to see her again. She didn't seem to "get it." More details are in the post. I know where to find Mary Lou and sometimes I leave extra time and go find her. She reminds me of my mother. The two cardigan ladies had a special bond. As I'm writing about her, I'm thinking it's about time to go seek her out.

As a journalist and a superstitious person, I can't say that at the end of this month I'll celebrate the 11th anniversary of my fourth transplant, or, my 11th re-birthday.

I have to say that at the end of the month I hope to celebrate, or expect to celebrate, because you never know. Or I can just say it and add keinehora  and spit three times to ward off the evil eye.

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