Still, it was a down day in terms of platelets and hematocrit. Last week I had 27 platelets and left without a transfusion; this week I had 13 and needed a transfusion. This week my hematocrit was 22; last week it was 24 and I snuck by without getting blood. This week I needed two bags. White count remained normal (another yay).
I asked Melissa how it could go from 27 to 13. She said the good news is that my bone marrow is fine, and that given all I've been through, it makes sense that my marrow is taking its time producing platelets and red blood cells. In a sign of either being a persistent reporter or a pushy person, I asked her again, using slightly different wording. She gave me the same answer (duh). I understand that I'll get the same answer every time, but I feel compelled to ask. I don't really mind going there once a week. Everyone is lovely, and it gives me a chance to put on normal clothes and some jewelry. Still, it can get frustrating, and especially since I'm going alone now, it can make for a very long day.
Margaret had met me for lunch, a nice diversion in a long day. The waiting room overflowed with people like me whose Monday appointments were canceled due to Columbus Day, and with patients who normally came on Tuesday. After Margaret left, I waited to see Melissa and then waited about an hour and a half for the blood bank to send over the "product." By the time I got out of there, it was 8 p.m. I had to get a high-test coffee; it was either that or fall asleep. Got home around 9:30, dashed through the grocery store and had a sandwich for dinner at around 11. I slept through some of the transfusion; that and the coffee had left me pretty wide awake even after midnight. So I took half an Ativan and went to bed around 1. Next thing I knew, it was 11 in the morning.
On another topic, at the last minute the insurance company approved four visits by the physical therapist. I ran out and got an exercise ball and went through the exercises with the therapist, Keith. I have my work cut out for me. When I tried to balance on the exercise ball, I rolled over onto the floor. He tied a Thera-band to the post at the bottom of the staircase and told me to loop it around my waist, lunge backwards and then come forwards with control. Instead, I catapulted towards the stairs. There are others, none of them too much fun.
Be careful what you wish for.
I'm supposed to do most of them three times a day. Yesterday was a washout, so today's the day. I'm exhausted. But I guess I better start. I can't remember everything he said, so it's a good thing that he printed them all out, with diagrams. Now I have to find that piece of paper.
6 comments:
100% donor. How cool and what splendid news! Cheers and claps from Tennessee! Jim and Dori
Yayy - great news about the 100% donor bone marrow! Will you ever get to connect with him/her I wonder? Quite an amazing thing, isn't it ... :)
yippie on 100%!
I'm LOLing on the PT...sometimes, what it says to tell the patient isn't what the patient can handle...insurance co have any more questions as to whether you REALLY need PT? Glad you've got it and do what you can---even if it means just rolling out the ball, holding on to a chair and attempting to mount the dang thing without it rolling away or flinging you into the next room!
The bone marrow result news is wonderful! So happy for you. I was given PT about five years ago. Working at the place was one thing but they had me use the bands at home. I had the diagrams too but often it was too much trouble and I just stopped. Luckily, the arm improved anyway.
Really good news, clean bone marrow is what it is about - everything else will get back to normal.
Keep fighting, keep living.
You're lucky you like going to clinic. I hate it. This Wednesday should be an all-day affair for me. Maybe if I concentrate enough to read, I'd have a different attitude.
Congrats on the 100! You get a gold star.
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