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| Talking up a storm at home away from home |
It was easy peasy and actually fun to be at 9 a.m. instead of my usual 4 p.m. with a whole new crowd of graft vs. hosters. It was a full house. When a nurse called out the patients' names to another nurse to show that all beds were accounted for (six I think), it sounded like names in a line of school kids.
The woman next to me didn't stay long. They couldn't get the needle to go in deep enough for the treatment. She was cheerful enough, though. They did get enough for a blood count. It made a big splat on the pillow. She reminded me of me because before she left, she wanted to take a picture of the splat to show her daughter.
She told me she comes once a month and has been at it for seven years. She started like I did, twice a week, and reduced gradually from there. So comparatively, my two years is not that long. It's hard to imagine continuing for that many years. But a doctor told me when I started that many patients are so happy with the results that they prefer to come back for touchups rather than going back to having tight or itchy skin, common manifestations of graft vs. host disease of the skin, one of the side effects of bone marrow transplantation.
To recap: Mine started with hardened skin (abdomen like a bowling ball) and indentations that look little pockmarks, ripples or dimples on thighs and stomach. Progress is hard to quantify because you don't have a number or a specific marker on which to base change (or lack of it.)
My skin has definitely gotten softer, which is good because if the condition is left untreated, the skin can harden even more in a dangerous way that inhibits motion. But it is still not smooth. And a hard area like a low-slung belt gives the sensation of a band under my abdomen. It could be worse because a nurse told me that for some patients, the "band" is higher up and they feel like they can't breathe. Still I don't like the way it pushes my stomach out.
There are two parts: how I feel and how I look.
The first part is the most important. I feel like I am moving much more freely and have better flexibility and balance. My hands aren't puffy anymore, and my skin overall is less constricted. It shows in yoga, tennis and walking. Our coach, George, asks what they are putting in my veins.
On the negative side, the feeling of a band around my stomach can get really uncomfortable. My skin on certain areas still has the dimpled look, and not on my face, where it might be cute. You wouldn't know it unless I pulled down my pants or lifted up my shirt to show you. (I showed a friend when we shared a dressing room and she could have done without it.) Last summer when I visited a friend in Florida and put on a bathing suit, she asked, "What happened to your legs?" Apparently it might never totally smooth out again, but it is supposed to gradually get better, or else I wouldn't keep at it.
I told my nurse I might not take my oxycodone because I wanted to read. She said why not just do it. I did and was glad because she couldn't get the needle all the way in on the first try. You can tell when it's not a "good" stick; it's a deeper pain and lasts longer than the discomfort that usually wanes when it goes into the vein as it's supposed to.
She got it in on the second try. Having taken the oxycodone, I read the same pages of my book, Anna Quindlen's Miller's Valley, over and over. The "oxy" makes you more talkative. And leads to a goofy look that you can see in the photo.
The rescheduled ride back home worked out, with the driver actually showing up on time and not being too strange, although she did talk on the phone most of the way.
Back home, I lay down on the couch and couldn't decide if I wanted to wake up or go to sleep. I dozed for a while. Needing to make an appointment for the Mohs to remove the basal cell in my outer ear, I looked at my tennis schedule to see where I could schedule it to have to get the least amount of subs. I asked the dermatology scheduler how they do it. She said the doctor would explain.
It's not usually productive to look things up. But I looked up skin cancer of the outer ear to try to get an idea. Some photos came up that made me say eeeeeeuuuuw. I was sorry that I looked. It's hard to imagine because the area has so little skin. Apparently the doctor scrapes it one layer at a time.
I was happy when a friend said she would take me. So at least I won't have to worry about the transportation.
"I hope I do a better job than the others!" she wrote in an email.
No doubt she will.
We are talking about doing a little shopping afterwards. It is fun to have to tack something fun onto a potential ordeal. Or the idea of it, anyway. If they do just one pass it might work out.
On the other hand it might be like when I was preparing for my colonoscopy and I called my mother and said I felt fine and might go out to the store.
"Just you wait," she said, or something like that.
Obviously my shopping trip didn't materialize.
But you never know how things will turn out.
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