SO I GOT SPRUNG in just 15 days from the transplant center, but that doesn’t mean I’m really free — at least not yet. For the next 2-3 months I need to live on guard against the stray germ, while my immune system rebuilds and my blood counts come back to normal.
One of our new friends from the Myeloma patient support group called it “100 days of house arrest,” which drew chuckles and knowing nods from others who had gone through the transplant experience.
Most of the precautions make intuitive sense if you give the matter even 10 minutes of thought: Avoid raw or undercooked foods (alas, no sushi or eggs over easy). Wash vegetables carefully. Stay away from crowds and public spaces. Wash your hands a lot.
I’m also taking an antiviral medication for a while and making regular clinic visits so they can monitor my progress and head off any infections. Val is doing all the driving, since I’m surprisingly fatigued much of the time.
No Ankle Bracelet
Yesterday we had a chance to talk all this over in a consult with Dr. Y., head of the stem cell transplant team. We went over all my “numbers” — white blood cell counts and other indicators of a rebounding immune system — and he said with a great smile that my progress so far has been “spectacular” and rapid.
So why do I feel so slammed? Well, growing a new blood cell factory in one’s bone marrow takes a tremendous amount of energy and no amount of good attitude can get around that hard fact. It’ll take about 100 days before I start to feel a normal energy level, he said. (Where had I heard that before?)
Well apparently I won’t need an ankle bracelet to keep me in line, since I still feel like sleeping 14 hours a day. I try to use my remaining hours productively — keeping up with essential business matters and of course, this blog.
Cool Heads Prevail
I’m still sporting my prison haircut and Joel, my personal style consultant, kept his commitment to shave his head in solidarity, as the photographic evidence proves.
A few weird facts about this: My head really is cooler, and sometimes I need to wear a hat indoors. Most of my hair actually fell out, including my whiskers and some areas of the torso, but my arms are still covered with a dense reddish fur. It feels like some pale hairs are already emerging on the top of my head.
Will my next nickname be “red” or “whitey”? Stay tuned for about 100 days.
NEXT: Brokaw Speaks
© James Tenser 2014
Great hearing from you. Take care
Loving the father/son picture! What a statement for a hair stylist to shave his head in solidarity. Way to go, Joel!!!
My response to my mom when she feels fatigued?? TAKE A NAP!!!!
Hang in there, cuz, and thanks for finding the energy to keep us all posted…
A neighbor of mine had a similar sentence. He could only eat pasteurized food — canned veggies and such. He could eat potato chips but only if he opened the bag, and if his kids had one, he couldn’t have anymore. I think they re-homed their dog for months too. The good news is that he’s doing great. I know you’ll get through this, too.
Don’t think the fatigue ends after the 100 days, I still sleep more then ever before and the only difference is, I don’t feel guilty anymore. Need to have plans for the day to get me up and going. Easy to be bored when I don’t have a job for the first time since I was 9 years old. Your doing great. So glad to hear. Keep it up.
Hi Jamie:
You seem to be doing very well indeed. Good.
Sleeping 14 hours a day…..well, now you know what a cat’s life looks like…….:o)
Don’t make it an obligation to join the support group on Saturday….. It’s really up to you of course…. but you know those little germs……..they can get very nasty very fast. So…fine if you come…..and certainly fine if you don’t. You see how you feel.
For now, ……be patient, it’s all worth it at the end, and soon the whole thing will seem like a bad dream that finished well.
We think of you every day,
Jerome – Yolanda – Genevieve
Hi Jamie,
Glad to hear of your great progress. Until I saw the latest picture minus beard I did not realize how much you look like your mother. The smile is all hers. Hope to keep hearing positive things.
with much love and good wishes,
your cousin Judy O
Bald guys get the babes and the contracts… never figured it out til now.
Jamie,
Great blog! Thank you for including me.
You are doing so well! I want to be just like you for round two of SCT when I get there; up and at the meeting following the procedure! :-).
As others have told you sleep when you feel like sleeping. And, don’t over do it when you are awake.
My prayers are with you for a NCR status that lasts a very long time.
Elisa