Lessons That I Cannot Learn
(If you are considering getting a stem cell transplant for an autoimmune disease and want to know what it was like, you can go back to my very first post and follow along with me. I did it at Northwestern with Dr. Burt. Spoiler alert, this post gives away the ending.)
Sorry it’s been so long since I updated my blog. Remember that I got my stem cell transplant in September, 2015, and my last post said something like: sayonara. When I came home, I imagined that I’d exactly like Halle Berry in Cat Woman. This is problematic for a number of reasons…I don’t even own a whip.
In the first month after the transplant, my MS was worse then ever. I struggled to walk. I wondered if I’d done all of this for nothing. It seemed selfish to have tried this foolish thing. Whenever I looked in the mirror, a sick, bald person looked back.
Everybody said returning to life would be like a rollercoaster ride, and I thought, “That sounds like fun, I’ll just go up, and up, and up.” Tick, tick, tick, tick, tick, says the roller coaster.
September & October
I tried to go back to work as an editor and found that the piece of my brain that that found the right word was gone. Before chemo, I’d read “she crouched and slowly walked” and my brain would whisper “she crept.” It was as easy as breathing, but now, I was broken. Sometimes, the only word I found was “fuck.”
I, like many chemo patients, was smacked into menopause. This arrived with hot flashes that kept me up all night and the anxiety of a middle school girl.
I drank a smoothie for breakfast. My smoothies have spinach, broccoli, berries, almond butter, etc, etc, etc. Healthy shit. About an hour later, I threw up for 5 hours. Every time I moved, I would puke so hard I also pooped. I did not realize that this was from the smoothie until the second time this happened. But surely, it could be a coincidence.
I wasn’t funny anymore. I would try, and people would look at me quizzically. I’d shrug. This was demoralizing.
And all the while, there was back to school, work, life, climbing, and my book that I desperately needed to revise.
November, December
I turned a corner. Some of the fogginess receded. My MS symptoms returned to steady state – just a little worse than before. I could walk – maybe a little further?
Then I broke my mother-fucking toe. No more walking.
I tried a smoothie again, this time with different ingredients, all still healthy. That day, while cleaning throw-up out of every garbage can in the house, Chris asked why I didn’t use the toilet. Quite simply, it is less confusing to throw up in the garbage can and poop in the toilet. The other way around uses too much brain-power and is way more gross.
My friend Amy asked if I would be on her podcast. She thought I might be funny. And I thought, oh no. She doesn’t know I’ve stopped being funny. I didn’t tell her, though. I just said yes.
Work got better. The correct words, with some coaxing, started to arrive again.
January, February
I started going for short walks, and this was interesting. I’d spent the last 15 years of my life paying careful attention to how much my walking would diminish. The increments got infinitesimally smaller every time. Ten years ago, that distance was 4 miles. Before I went in for transplant, that distance had shrunk to about 1/8th of a mile. But now, on these walks, I was watching to see if I got better. It seemed like, tentatively, the answer was yes. I started walking a one-mile loop, and going a little further every day before my leg went weak. I think, maybe, yes.
I feel better. I’m standing straighter. I can fully pretend to be normal.
March, April, May
I’m revising my book. It feels so good to do this. I’m revising to make it funny, and it’s working.
I’m walking every day. Maybe farther than before?
The Kidlit Drink Night Podcast (www.kidlitdrinknight.com) is a success. It’s a podcast for grown-ups who like children’s books. People who fit this description think that I am funny.
I go climbing. I’m not great, but I have genuine fun.
Work is fine.
I try a smoothie again, all different ingredients, because surely, that was just a fluke. I throw up all day.
June, July
I can definitely walk further than I could in the past years. I’m getting better! My son and I take long Pokemon Go walks (I love that game) and I can go further than I could in years. I’m like Benjamin Button. The clock is turning backwards.
I finished my revision, and the book is out on submission. A bunch of agents have shown interest, but more than that, I think I’ve truly found my voice. It’s dark, quirky, sweet, and funny. Like me. This blog and this experience helped me find it.
I took the kids and visited my friend Beki in Atlanta this weekend. She’s the one who made that great video with people holding up words for me. On Sunday morning, we walked to a spot for breakfast. Next door, there is a smoothie place called Kale Me Up. I think, yeesssssss. Just what I need. Health food.
I choose the one that is most different form any smoothie I have ever had. About an hour into my drive back to Raleigh, I feel it. Oh no. This is not possible. I make it to a McDonald’s and spend two hours throwing up there (in the parking lot where it is 104 degrees, in the McDonald’s bathroom, kneeling in front of my car to hide, in the McDonald’s bathroom again). I rally and figure I can take the drive home one exit at a time. Maddy calls Chris, and he tells me to check into a hotel. Now there’s an idea. I scan the horizon. There is a Quality Inn across the street. No. I figure I will get the kids food, fill up the car, and head home. I make it to a Bojangles and throw up in the parking lot. It is incandescent yellow bile. I make it to a gas station and have Maddy fill the tank while I throw up in the parking lot. Maddy calls Chris, who is in the car, heading my way. He tells me to check into the Quality Inn because throwing up while you are driving 80 miles an hour is dangerous.
I think to myself that I would go the speed limit. I’m not stupid. But I relent and check in. I spend the night listening to a book on tape while the kids watch cartoon network. Chris arrives at around 8:00 pm. He kisses my head. “I would’ve thought the smoothie thing would have resolved itself by now.”
“Me too. Obviously.”
So, everything is great. I maybe learned my smoothie lesson, but probably not because it doesn’t make sense. Chris is still my hero. And I am getting better.
Filed under Stem cell transplant for MS | Comments (2)