It’s been 5 months. 5 months to the day since I was sitting in a hospital bed being infused with Shaun’s cells. 5 months ago I was vomiting. And quite honestly having a pretty terrible day. Thinking back to that moment I can remember exactly how I felt. It was awful. Today. Today I’m much better. Still not 100% because apparently that will take another couple months. I do just want to yell at my body to suck it up and get on with it already but I know it’s doing its best.
I feel like a lot has happened over the past 5 months but when I make a list of the things I’ve accomplished I feel bad that list isn’t longer. I suppose if I were to list out all the movies and episodes of various tv shows I’ve watched. Or the number of articles I’ve read. Or summed up the amount of time I’ve spent at hospitals and with doctors it might be impressive but I’m honestly disappointed that I haven’t done more. I only begun yoga a couple weeks ago and still cannot walk up a flight of stairs without becoming exhausted. Running? That’s just out of the question. I still haven’t knitted. Or cross stitched. Or learned a new language. Or to play the piano. Confession…those last two I wasn’t expecting to do but how cool would it have been if I had. I did get a new neighbor who plays the piano nightly and that’s sort of the same thing as me learning, right? I mean, I do turn off my tv and just sit and listen. Piano is actually on my list of things I want to do but just not now. I think I need a lot more concentration for that than I currently have. (Case in point…look how jumbled this post is! I feel all over the place.)
Among the upteen things I’ve learned, I’ve learned that recovery is hard. I‘ve been waking up daily with headaches which I am pretty good at catching before they get too bad. But when I don’t catch it. And it does become bad. I can’t do much. I don’t have the energy. Or the motivation. And I don’t get out of bed until 10. And I stay in my pajamas all day. And convince myself that cereal is an okay thing to have for dinner. But! On the flip side, I also have days that are great and I’m productive. And feel like I’m really making progress. I think I should have gotten a list from the doctors of what “progress” looks like to them. It would have been helpful so that I could look at the list and say “Yes! Ha! Look how I’m progressing!” I do realize though that I shouldn’t be comparing myself to others right now and that I can measure my own progress based off the fact that 5 months ago I felt like I was going to die and today I don’t.
The doctors did tell me (maybe “warn” is a better word here) that it would take me 6 months to 1 year to get my energy level back and I didn’t really believe them until now. Now that I’m 5 months out. I can believe it. I couldn’t imagine having a job right now. Or kids. Or pets. Anything that relied on me. Because on those days where I don’t want to get up. I’d be forced to. There are lots of days I let the dishes pile up and wait a week longer than I should to take out the trash. But really. I did those things before. I just feel like I have all the time in the world right now and that I shouldn’t let that happen. Sometimes you just have to forgive yourself. And I do that a lot.
Speaking of forgiveness, I didn’t ever tell you the results of my chimerism test that was redone at the beginning of September. I’m sorry. (I did just look and I got the results only 13 days ago so now I don’t feel as bad for not telling you sooner but it was good news so I should have at least informed you.) So, remember how I had the chimerism test done and my CD3 number had dropped from 34% to 29%? After the retest, the number had risen to 52% which is excellent news and means that I won’t need more of Shaun’s cells. (Sorry, Shauny, your cells will continue to be sitting in a freezer at NIH for now. Just chillin’. HA! See what I did there??)
At the end of the month I’ll be going back to NIH for my Day +180 tests. Another bone marrow biopsy. Labs. And I think I get to find out if I’ve actually became infertile. Which I’m pretty sure I have because I’ve been having these hot flashes ever since I got that one shot to stop my period. The shot that was supposed to last 3 months. And now it’s been 5. I’m convinced I’m postmenopausal. Is craving red meat a postmenopausal symptom? If so, I definitely am. At the age of 29. Cool, huh? But, we’ll find out for sure. I think. So stay tuned! I’ll even show you my armpit again soon.
Then the week after I’m at NIH I get to…wait for it…GO BACK TO WORK. Yepppp. “GET TO.” I told BloomReach that I’d like my return date to be Wednesday, November 4th. I know. I know. You think I’m insane. But I’m ready to get back to normal. Get back to a schedule. Get back to ME! (And the doctor said I could go back to work post 6 months. I’m really just following the doctor’s orders. Like a good patient.)
Yes. My hair is growing back. I’ll post about this soon. It’s an exciting topic.
*Disclaimer: This photo was actually taken on May 2nd, not May 1st. But it’s close enough. And since technically it’s already October 2nd on the East Coast these photos were taken 5 months apart. We’re basically in a time travel or something. Don’t question it. It’s just science. Trust me.