As predicted by my nurse, I gave myself 2 weeks out of the hospital to BEGIN to feel a little better. And I actually have. My mom was here last week which was nice. I don't see the progress that Brett and my team has been seeing, but I do read my counts. And mine are going up little by little. I am actually making platelets which means no transfusions for...I can barely remember the last one and I don't seem to need one in the foreseeable future. I'll probably still need red blood once a week or so since those take longer to make, but they don't turn over as fast as platelets so don't need to be transfused as often. So I'm on a 3-day a week visit to clinic now instead of every day. That's kind of nice. My energy level is higher, but is such that when I do push it a little bit or do something, I am completely exhausted that day and the day afterward rather than energized. So after Luna's busy Halloween weekend, I'm a little shot. But I realized in clinic today that I actually smiled during my team meeting and joked around and I can't remember the last time I've done that. I also had an Ommaya injection (head port chemo) on Friday that went pretty well. They've decided to continue these for a few months since the CNS is a potential place to relapse. The upside is that I'm on steroids for that again and they have incidentally cleared up my rash and boosted my WBC and ANC counts. So no shots for awhile!
I actually don't have a lot extra to add to this post, just a couple of good things. Anything can turn on a breath in this game though, so I try to remember I can be back in the hospital with a fever at any moment. But I've kind of been relearning the old one day at a time trick that I learned when I first had leukemia. I'm kind of learning to deal with yet another new kind of normal. And I'm sure it won't be the last.
By the way, I reread my older posts last night and I don't know how that incoherent drug-induced post after transplant made it past the editors. I also suspect that I sent some questionable emails but I'm too scared to check my sent box so let's just put it behind us if you received one, hmm?
12 comments:
That must be quite a trip for you to read the earlier posts. We are so glad that your progress continues and that your numbers continue to be good. We will look forward to seeing you next week.
Keep up the good work!
Great news! Thanks for the update.
Nice effort on the positive spin. I loved the Halloween pictures. I wish we could get out to see you all. Hopefully that can happen when you have the chutzpah. Hopefully soon.
Keep up the good work Quinn!
You need Red blood... Heh heh kept thinking how great it would be if you could just buy a bottle of True Blood:). So happy to hear my y-shy ;)
Xoxo
Thanks for the update. I'm praying
Thanks for the update Jessie!
Keep smiling, Jessie!
So nice to see you up and smiling. I read all your posts and have shed many tears and many many more smiles every time I think about how strong of a person you are. I hope you continue feeling better and better.
WELL DONE Jessie and keep it up - I know (I know, I know) how just getting through the day can be exhausting; and you're trying to build a whole new organ! Think how much sleep children need while they are growing. Anyway, thinking of you, now from raining Cornwall. Rosie xx
You are a strong, amazing woman Jessie! Thanks for sharing your crazy adventure. I love your drug-induced warning for your past post...giggle, giggle.
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