I seriously thought someone had mischievously manipulated my dry-erase board when I saw Day 18 up there a couple of days ago. I can't believe how much time has gone by and how little of it I remember. How is it that I don't even totally remember writing the one blog I have written since transplant? The possibilities for personal humiliation are just about endless, so I'm not asking too many questions about my lost weeks. Brett's blogs tell me all I really need to remember as far as I'm concerned. But I feel like I just woke up.
My new found sentience came with the realization that, "Wait a minute, I've been in this room for. 26. days." And I would like very much to go home now. Suddenly, the days are very long.
I am waiting mainly for my neutrophil count (ANC) to get to 500 for a few days, then I can be discharged. Currently, they continue to bounce around between 100 and 200, which they are wont to do. You may remember from previous posts that I am always waiting on these things. Generally, I think the numbers are trending up s l ow l y. I have to admit that I thought the clinical trial I'm on would give me a superhuman recovery time, and although this feels incredibly long, actually I'm on track for a normal cord blood transplant recovery and ahead of the curve in many aspects. The 3rd expanded cord seems to have made recovery smoother, if not shorter. Particularly, the mucousitis was not so bad, no mouth sores and only throat pain. I was only on IV nutrition for a day or 2, while most patients are on it for weeks. Other side effects weren't too bad either. Of course, I don't remember them, so that helps. There are just a couple of things.
One thing that persists is a rash that no one is hugely worried about but is uncomfortable and unsightly to me. It's on my feet, hands, arms and around my eyes, of all things. It is probably a drug reaction, and we have not really tried to treat it yet since the drs. are still goofing around with my drugs. How many, you say? I have LOTS!! Anyway, it flairs at night and itches.
The other thing going on that I'd like to whine about is the burning sensation on the palms of my hands and soles of my feet. Another drug reaction, I'm told, but annoying nonetheless. I have also lost my hair again and gained about 50 new freckles on my shoulders from the TBI. I haven't lost too much weight, so my dietitians are happy (they come by every day it seems). So that's my current state of affairs. Oh wait! I also can't taste sweet. It took me 4 sugars in my coffee one morning to realize this. Anything (formerly) sweet tastes like cardboard. I'm just avoiding sweet things for time being, which I guess is not a bad thing. This should be temporary, but still it's weird.
I really have no huge complaints. The ICU for transplants is on this floor and it's a horrible reminder of all the things that could be going on for me. So.
My lovely friend Jenny sent me some knitting supplies and a book so I'm trying to teach myself that. I think it has reduced my hand tremors (another drug effect) a bit and it's good to focus on something when my short-term memory is so shot. Jo brings Luna to visit just about every other day so that is AWESOME. I've been watching a lot of Pawn Stars on the History Channel which I consider an educational show and also perfect for someone with no memory since they replay a lot of episodes and hey, they're all new to me! I don't expect I'll have a lot more to report until I find out I get to go home.
Hope everyone is doing well. Thanks again for all the thoughts and prayers and messages. Much love to you all.
15 comments:
How lovely to finally hear from the "Q" source. You are sounding like your old self and I'm so grateful that all continues on the "up". Continued love and prayers to #1 from #1!
It's so great to hear from you Jessie! Teaching yourself to knit? I did that once. It definately will be a time passer for you. Think of all the cute hats Luna will be wearing! Or maybe all the doll blankets she will use? I'm thinking about you and your family often.
I'm grateful for the progress and to be relieved of the blog duty.
While Brett performed admirably in your absence, it's good to have you back.
*hugs* Glad to hear you are doing better even if all these side effects are crappy.
I can't help but notice the parallels between you and the Chilean miners who about to be rescued one-by-one any time now. All 34 of you would like a taste of coffee the way it tasted before. All 34 of you have been trapped for what seems like ever (except you can't remember a lot of it - I imagine that is a good thing) and all 34 of you will soon go home. I hope you smell better than them. So good to hear your "voice".
YAY! Happy 20th Day! And who cares if you were comatose for most of it -I'm sure all important stuff will be filled in later. Glad to hear you are handling the side effects fairly well!! And if anyone makes a comment about your bald head or your scarf on your head, just tell them you are a pirate... that'll give'em pause. Sending healing hugs!!
Great to have you back, Jessie! But Brett did a fabulous job of filling us in during your absence - thanks Brett! Thinking of you always and sending love and prayers your way, girl!
PAWN STARS is my new addiction. watch it, all the time . even the reruns are interesting. i'm relieved you're getting back to "normal" watching "some" tv. American Pickers, also on the history channel is great. anyhow jessie, when i see you in november we're going dancing. jocko
We just watched our first American Pickers and Pawn Stars last night. Maybe our garage isn't as bad as I think. Brett did a great job as fill-in blogger, Jessie, but it is great to have you back again. It can't be long now until you can make your escape. I can't wait to see to see the Halloween photos of you and your family.
Glad to hear you are well enough to type and that the recovery is progressing. Though, those side effects sound terrible. We are thinking about you every day and hoping to see pics of you outside that room soon! xoxo
Welcome back to blogging! Brett did do a great job but you have a great style that I've missed! HUGS
So wonderful to read your blob, got to love technology! Sending much love to you Luna and Brett.
So great to hear from you. Counting the days until I can see you all. Now that you're up and around (so to speak) I'll try calling. And since your hair is gone, I will finally send the box with the beautiful hand-painted silk scarves courtesy of Pavel's mother (and Croatia). I didn't want to remind you of scarves if your hair was coming back but they are quite lovely. If you get frustrated with the knitting, I'll help you when I get there. See you soon...
If your knitting takes off, and you're interested in a bit of urban graffiti, google guerilla knitting. We are currently knitting a sweater for a local dolphin fountain. A dolphin in a sweater, what could be more fun! Good to hear your mind has returned to us and that you're back to blogging.
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