...for at least the next few months. :( Tomorrow is the day - let's just say I haven't been looking forward to it. I check-in at noon at the nurse's station in 5B, and they'll admit me to my room, and well, that's that! One of the doctors I spoke to said he believes they may start chemo tomorrow - they're not wasting any time.
An unfortunate detail - they found blasts in my blood. My last blood work-up showed 3% blasts in my blood, which is NOT good. It means the leukemia is active - they'll still do the transplant (they said they do transplants on people with up to 30% blasts in their blood), but again, this is just another sign of how quickly my leukemia is progressing. This next round of chemo, which consists of Cytoxan and Busulfan, is myeloablative, meaning it should kill the lingering leukemia as well as all of my own bone marrow, even the healthy bits. So I'll be sans immune system, all empty and waiting for my new marrow to show up and take over. That happens on the 14th. After I get the bone marrow infused, I have another 3 days or so of Cytoxan. Then that's it - we sit back and wait and hope.
I'm devastated that I have to go back for another month of inpatient - literally devastated. I've only been home for like, 2.5 weeks, but things got so comfortable and back to normal (for the most part) that I'm having a hard time imagining leaving all of this for the confinement of Hopkins. Just the little things I always took for granted:
-taking a long, hot shower (without being attached to a metal pole full of machines)
-being able to move about freely (without first unplugging and lugging around that damn machine)
-walking around outside, around plants and trees and nature in general
-eating what I want, when I want to eat it
-being around my family and friends and pets
-being mobile - riding in a car, being able to go places (instead of being confined to Hopkins)
Stuff I never thought about before that I appreciate so much now. I know it's just a month in there (before I get to go to family housing, which while not ideal is definitely a step-up from inpatient), and a month will go by quickly with treatments, visits from friends, explorations of the hospital, books, movies, etc. Marietta is going to teach me how to knit, and I bought a few new books, and I have 2 seasons of Flight of the Conchords to watch, and the blog, etc. So I'm hoping this next month will fly by (even if I'm in a morphine-induced stupor for some of it). A good friend reminded me today that this is just a few months - this isn't forever!
So to "celebrate" my last day here, I slept in, did laundry, lazed around and watched TV, took a long walk with Gus around our neighborhood, hung out on the front porch and just enjoyed being outside, bought a few books from Borders, and had take-out Chinese food. Not bad. I'm procrastinating with the packing. There isn't really much to pack - pajamas, lounge clothes, toiletries, towels and bed linens (I like my own sheets on the bed, they're nice enough to accommodate me on that), reading material and some little homey touches like pillows and throws, photos of the kitties, etc. It's amazing how little I need for a month-long stay at Hotel Hopkins! Mom arrived today, she's getting settled in family housing so she'll be there when I check-in tomorrow.
So I guess that's it - once I'm in, it's all out of my hands and my only responsibility is get well and stay well. Sorry this is such a sober post - I'm trying really hard to stay positive and think of myself as being on the road to the cure, but with little Fitzy baby snuggled up next to me on the couch and Gus 2 feet away just hanging out with me - it's hard to leave the comfort of domesticity.
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Certainly not something to look forward to, you know the folks at Hopkins are going to give you the best care possible. Before you know it, you'll be back home again and all of this will be a fading memory. Rest assured that our thoughts are constantly with you and Gus. You will get well... and you will stay well. Tons of love from both of us. Bev & Bill xoxoxo
ReplyDeleteHey, my friend
ReplyDeleteTreat yourself well, do not hesitate to ask fro all the drugs that will make life as a bone marrow transplant patient easier and think about all the good times ahead!!! Over here we are all keeping our fingers and toes crossed that everything will go well and that you will fly through this and be back on your feet and into the real world in no time.
NPR did a segment on Jeff (my friend who gave life to a Leukemia patient last year) and his donee (is that a word even???). Here is the link to the audio:
http://www.kclu.org/news/local/search.php?q=bone+marrow
Given everything you've already gone through, I'm positive that you can handle the next adventure with similar spirit, interest and perceptive insight, and perhaps even an occasional bit of humor tossed in to help the daily routines pass more easily. You will look back upon this all in the not too distant future as you enjoy life even more than you might imagine today. Wish I could be closer.
ReplyDeleteLove,
---Cousin John[ny]
you vill learn to knit and you vill like it!!! or maybe ve can crochet :)or max's latest favourite past time - COLOUR!!!!!!
ReplyDeletebtw - how monk of you and the sheets :) btw - have web cam now - can sen you videos of baby much easier now...still working in that other one
love and miss you - mar
What John(ny)said. Including the closer part.
ReplyDeleteLove,
Cousin Marsha
Before you know it...you'll be able to knit your very own GLITTENS!!
ReplyDeleteGo get well now.
G&G
Hey Jess,
ReplyDeleteyou will be just fine. And in addition to the fact that you will be perfectly healthy come this time next year, you will have this new-found appreciation for life and all the little nice things that come with it.
Thinking of you and sending lots of love and support across the Atlantic (even though I had to divert some of it to my good friends in Santa Barbara whom I hope will be spared by this wildfire).
Love,
Surrogate
Hi Jess. When you read this note, you will be settled in at Hopkins, imagining those blasts dissolving from your bloodstream thanks to the chemo. Remember that cowboy with the shotgun you posted way back when? Well those blasts will be history quite soon! You've got quite an arsenal there at Hopkins, and the big guns are en route in the form of the BMT. Keep strong and positive, like always, and remember we are all packing ammo for you as well.
ReplyDeleteLove, Cousin Peggy