Wednesday, December 2, 2015

From not answering the phone to oversharing on the phone

What's worse than a crazy driver?

No driver at all!

What's worse than no driver?

Waiting for more than an hour, to no avail, for someone at MART to pick up so I could find out what happened and try to book a ride for today, while Hannah Kitzmiller, the resource specialist at Dana-Farber, also holds for more than hour, then realizing I better gas up and drive myself, which I do in the pouring rain, and then driving back in the dark in the rain and fog, an eight-hour day all together.

MART is worse than Comcast, and that is saying a lot. The only way you can get through is to put your phone on speaker and carry it around with you in your house for more than an hour. Maybe even two. The recorded voice tells you that you can leave a message on the website. Which does not work.

Well, we all know that it could be worse. I realize this especially as I sit in my warm house eating broccoli and ravioli, relaxing with a smidgen of Ativan. Also I think my mother sent me a sign when I was standing with wet feet, pumping gas, and looked down to see a quarter in the dirt.

I got a high-test Starbucks and made it almost all the way to Boston without getting sleepy, stopping in Framingham for a pick-me-up of peanut M&Ms.

I got there early because I thought I had a 2 p.m. appointment with Dr. Goguen (to check on my tongue), when really she had canceled and changed the appointment to January. It is hard to keep track of her. This is the second time she rebooked. I thought I was very resourceful putting a reminder in my phone for the 2 p.m. today, which I almost forgot until I got the reminder yesterday. But I had forgotten to remove it. That part worked out well because I was able to get into ECP early. Still, I wasn't done until 6. And that was with only five cycles. I'm glad I was allowed to cut it back from six cycles.

I told Ellen, the PA, that Melissa had said I could start going every other week starting in January. Ellen thought that was a good idea. We would do that for three months and then cut back some more. After that, I would space out some more. But I will never totally stop. It I did, the Graft vs. Host of the skin is likely to come back.

While I was lying there getting my blood removed, a woman who I think was a resident spoke loudly on the phone about a patient. I found this disturbing and unprofessional. She was talking about a patient who sounded a lot like I had been. Platelets as low as two, bumped up to 40 after a transfusion, responding just to HLA matched platelets, in some kind of difficulty. The woman said she had had a disagreement with Dr. Antin and realized afterwards that it was a bad idea because Dr. Antin always needs to be right although she still disagreed with him. (She was referring to Joseph Antin, chief and program director of stem cell transplantation, who was my friend Patricia's doctor.)

Rather than looking at me, she looked through me. Meanwhile, I had received a call from a friend and said I didn't want to talk too long because I was in a big open space and didn't want to disturb anyone. Signs in the elevators warn against talking about patients. And here was this employee discussing a patient out in the open.

It sounded so much like me that I told my nurse that I had been that low and had been saved by an anonymous donor when I needed platelets before they could insert an catheter in my neck to begin dialysis when I was in kidney failure.

With that story fresh in my mind, I went over to the donor side as I sometimes do, to tell the story and thank the donors. I spoke to one woman who, "It's my pleasure." The donors and the nurses seem to like seeing someone like me who would not be alive if not for their generosity, and I like to go over and thank them. I wish I knew that one particular donor who saved my life.

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