Tuesday, May 3, 2016

Altering schedule creates domino effect

I think I forgot to say that they stretched out my internal sunburn even further, to every three weeks. They are pleased with the progress that I have made in the year that I have been doing this so that is why I get to go less frequently. (I have been trying to think of a good shorthand for the blood thing which is technically called ECP and since Dr. Marty asked "How is the internal sunburn going?" I think that is a good one.)

The memory feature on Facebook came up with a photo from a year ago when I was in a bed getting my first treatment. When I started, it was twice a week. I could not believe I was going to have to do this for three months. But as happens, time flew.

A friend wanted to know how long I would be doing this.

He asked, "For the duration?"

I said yes, though hopefully with decreasing frequency.

It is good to cut back even more, but it creates a domino effect. I need to call or email:

MART to change the dates of my rides,

Dianna, who schedules for Dr. Alyea and Melissa, to change the date of my checkup which I had made for this week when I am really going next week, and

Dr. Liu, an endocrinologist who I am seeing to talk about my bones.

I'm not sure I mentioned her. Dr. Alyea does not want me to get off prednisone. Never ever. It is only a small amount – 1 milligram – but as previously said, since it lowers the functioning of my immune system, I also take two preventatives, Bactrim and Valtrex. I am seeing Dr. Liu because prednisone can also weaken your bones and presumably she is going to suggest something to take to strengthen them.

When Dr. Alyea brought up this idea, he asked, "Have you seen an endocrinologist?" Which he followed by saying, "You've seen just about everyone else in here." I've also seen a few whose names begin with the letter L:

Dr. Stephanie Liu, dermatologist, Dr. Jennifer Linn, dermatologist, and soon, Dr. Eva Liu, endocrinologist.

Dr. Linn missed a spot on my face when she did the PDT (photodynamic therapy). It is a little thingie that I catch myself picking at. Ellen, the PA at ECP, said she didn't like the look of it. Jennifer (Dr. Linn) said she would get it with the face fry, but it didn't happen, and I don't think it should be left unattended because these things can turn into squamous cell cancer. Or maybe it already is.

I call most of these doctors by their first names except that I can never seem to be able to call Dr. Alyea Ted. Dr. DeAngelo was always Dan. Dr. Alyea is just more formal. Melissa will say about something, "I'll have to ask Dr. Alyea," never Ted. I don't think I ever heard anyone use Dan's last name. Well, I got that out of the way.

Sunday I was feeling forlorn and missing my children. A serendipitous encounter helped me get out of it.

In the parking lot at the Hampshire Regional YMCA, where I had gone for a pilates class, I pulled in next to a car where a mother was talking to her little girl as her daughter was getting into the back seat next to a toddler in a car seat.

"We will not play such and such when we get home," she said. (I can't remember the name of the game.) "You've already played it enough."

When I got out she was standing behind the car, looking soooooo exasperated.

We had a moment.

"I'm so glad I saw you," I said. I told her I was missing my grown children but that her situation made me remember it was not always perfect.

She said she was glad to see me too.

"I keep reminding myself that they will not be 2 and 7 forever," she said.

I told Katie about this over the phone that night. I said she and Joe were the WORST when I had to take them both to the grocery store. Somebody would always push the cart over someone else's feet or they would argue about who was going to push it and I would be so embarrassed at the checkout line because I could not get them to stop. And then they would argue about who started it. To this day that has not been resolved. (I'm not sure where Ben was in all of this.)

The scenes with Ben and Joe were different. Joe would go out in the driveway to play basketball or the game they created, tennis ball (with a bat and bases) with Ben and his friends or with Ben alone and I would say, "Don't make him cry!" Because that is what sometimes happened.

Katie said she remembers me saying, not just at the grocery store but whenever they were acting up or wanted something I wasn't going to give them, "No, and no, no, no no, no..."

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