I spoke to a nurse who is new to the practice. I gave her my list. She said she would get it to the doctor.
When another week passed, I called again (yesterday) and spoke to someone at the desk. She said that the best way to get in touch with the doctor is to email her.
"No, and no, no, no!"
I used to say this to my kids when I wanted to make a point. Although I didn't say it to the person on the phone yesterday, I wanted to. Instead I explained that I had already emailed, and then spoken to someone, and neither had worked.
So she patched me through to the regular nurse. I told her I wanted to know which creams, lotions or potions I should put on different kinds of spots and also said that I wanted to change my appointment in May to a regular checkup instead of a repeat PDT, or photodynamic therapy, as my doctor had planned, a departure from previous years when she has only done the painful "face fry" once a year, in the fall, when I am not outside as much as I am in the spring. (It's bad to be in the sun after it.)
"You're not high maintenance, are you?" she asked.
She said it was a joke and I knew it was a joke.
My answer was part joke and part serious.
"This is what happens when you have four bone marrow transplants and I'm trying to be a freelance writer but I spend half of my time following up!"
The practice, Brigham Dermatology, used to have a wonderful care coordinator on whom I could count to get things straight. I miss her because not only was she efficient, we had also become friends. One time when she helped me out in a pinch when I was in Boston and needed a suspicious spot looked at, I had to hang around and wait a while. I didn't mind because I was glad that she had squeezed me in, and I used the time to get her a little something for her desk. It is frustrating to have things run so smoothly and then turn into a bit of a free-for-all with nurse #1 who I spoke to last week apparently never getting the message to the doctor and my having to call again and explain the whole situation to the people at the desk and to nurse #2.
One of my problem areas is a new divot on my right thigh. After my last appointment with my primary dermatologist, the dermatologist in charge of my GVHD of the skin saw me in the hallway and graciously, on her lunch hour, took me into a room to look at the indent. She injected several tiny shots of cortisone into it and said if that didn't work, to use a cream that I used before, Clobetasol. Turns out I didn't have any, so I told nurse #1 last week that I needed a refill. She asked if I wanted cream or ointment. I said cream, which I had before. When I talked to nurse #2 yesterday, she said, oh, it is very expensive and your insurance doesn't cover it any more. Will have to wait for an alternative.
On my left thigh I have a lipoma (biopsied and deemed not problematic). Maybe I could suggest taking it off and using it to plug the hold on my right thigh. Or not. But at least I would be more balanced.
I could use my dermatologist's home email. She gave it to me, but I hesitate to use it unless it's especially pressing, say, for example, waking up in the middle or the crack of dawn to send her a photo of a spot that is freaking me out because I'm sure it is a melanoma. She is always reassuring, pointing out that for some reason bone marrow transplant patients tend to get squamous cells. I have had one basal cell (in my ear) and more squamous cell skin cancers than I can count.Meanwhile I need to get to the dentist because my "teeth" fell out...well, actually, it was the temporary that he put in last week in preparation for getting three crowns.
I had been very careful and was just eating something soft – a croissant – when I had that bad feeling of something odd floating around in my mouth. At least it was not the nail that a friend found in her food when eating in the restaurant across the street from The Republican.
You never know what can happen.
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