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elainegrey) wrote2025-04-20 10:23 pm
(health, cats)
I probably get to go home tomorrow -- sorry if silence was worrisome. Thank you for all your support and care.
The schedule for med delivery had me with interrupted sleep all Friday night as every hour or so bottles had to be changed and vitals checked until 5 am. Saturday the treatment started earlier and was done by 1 am. I have had to be very careful about the IV port in the crook of my elbow -- partly because it was oozing blood because of the low platelets, partly just to keep it working, and it is a little uncomfortable, typing hasn't been easy. But the last infusion finished in the early evening today ,and i just need one more dose of steroid pushed through and then the port will be removed: yippee. Lemme type.
I have also had family visits. My sister and dad stayed with me once i arrived at Chapel Hill until Christine came in the evening. On Saturday I was so glad i was not tied down with tubes when my sister in law visited. They have now announced that B-- may only have weeks to live, and it was good to hug her and hold her hand. My sister and niece gave me a lovely visit today, in happy Easter vibes. My dad has visited every day, and Christine as well. My nephew W-- was apologizing he couldn't visit and i told him i would listen to his winter concert again. It was lovely and i am loved, but my computer didn't get my attention. (And it if it did i was reading my chart and researching drugs.)
--== ∞ ==--
On Saturday morning i got a little more clarity about the initial reading: the number of platelets was under the threshold of 3k platelets per unit -- the limit of the lab equipment's capability to count. Depending on your communication style, apparently, one person said 2k (per some unit, which is under 3k) and the ER doctor at the county hospital was "not detectable." And i've grown more appreciative of the risk of a brain bleed at those numbers, although i think the ER doctor would have had is own anxiety driven aneurysm if he realized how many potholes were in the roads between the Siler City and Chapel Hill. I had a cat scan because i had a slight headache.
It's so weird. I don't feel like a fragile china cup.
"When the count drops below 50,000, bleeding can occur more easily after injuries, and counts below 20,000 can lead to spontaneous bleeding" This morning's read was above 20k, they seem willing to let me go above 30k
--== ∞ ==--
I had a new treatment today, Rituximab, which may help me not have another drop for a longer time. Optimistically, from the doctor, there have been patients who reportedly have gone for five years without a relapse. Stats aren't quite as optimistic, but i am grateful that in the past 15 years it seems this treatment has moved from what they fall back to if the splenectomy fails, to use as soon as the second drop
I probably still have a hard time appreciating the spontaneous bleeding risk.
--== ∞ ==--
It's surely been difficult for Christine to have two absences at home. I have a lifelike stuffed toy cat with me, so nurses and nurses assistants have asked if i have cats and i have finally learned to say "two" and not tear up. But i know i will have more tears to cry. I know i cry about Greycie Loo out of the blue still, because we thought we had so much time to still have with her, and the cancer took her so quickly. Luigi has been so fragile-seeming for the past few years - i suppose i expected him to die in his sleep. To have him loose his legs like Greycie Loo did, to have him so bravely try to drag himself to the bathroom, for him to not be distressed but relatively composed, oh sweet old man cat.
--== ∞ ==--
I understand tomorrow will be hurry up and wait as discharge churns through paperwork. I'll have a last dose of steroids so will have this energy boost to get me home. Then i know i will crash on Tuesday. I am not looking forward to work on Wednesday. I hope i'll have recovered from the steroid crash by then.
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Thank you for the portrait of Luigi. He looks friendly and curious. His memory for a blessing!
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Poor B, sister-in-law, and Christine.
Hoping the new drug shoves any relapse well into the future. Glad they scanned your head just in case. Try to take it slowly once you get home. Sleep without medical ministrations is good, not to mention without ports in one's elbow ... hope it all goes smoothly and you can start recovering.
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Yay to being home today!!! I hope you can finally get some sleep, that's the worst part of a stay at a Hospital IMHO. The poking and prodding doesn't help either
I totally get the whole fragile tea cup thing, I think that's the most difficult idea I've had to wrap my head around, I can't do the things I used to do. My brain says I'm 40, my body laughs and laughs and laughs
I have too much to do to be this broken!! I know you're feeling the same way *hugs again*
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My sister is so worried about the trip we took to Carowinds a few weekends ago. (When someone brings something up three times....) Whipping around in Carolina Cyclone is probably not good when spontaneous bleeding is a possibility. I suppose i will ask my hematologist if i should get a blood draw in advance of the trip we are hoping to take with my brother when he is here next.
Last nights' short sleep was all on me because i stayed up a little late, but it was so nice to feel free to type.
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and yes it's weird and maybe some day we'll both figure out how to deal with it
naps are a beautiful thing LOL I slept like crap last night too and have no clue why, today will be interesting
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IMHO you should take some extra time off, considering you spent the weekend in the hospital and not sleeping well. But if working helps you feel more normal, maybe?
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