Spaceship Coupe to Star Command: Requesting Early Launch

The real work begins. Monday brought the news that we will not be continuing with the current chemo regiment (the monthly 5-day hook-up with my BF Decitabine, whom I will hereafter refer to as BigDaddy), that the plan has shifted, and we’re starting it in a week. The nurse sort of mentioned this in passing “Heard about the great news—the donor—so obviously you know the plan has now changed we’ll be skipping BigDaddy* this week and starting induction chemo on Monday how are you.” Welcome to the comedy show where nothing’s made up and the points all matter. My eyes sort of started crying, suddenly, without my consent—as I told her that no, I did not know that the plan had changed and no, it was not obvious. I asked her to repeat it again, to explain exactly what the plan is now. (*didn’t actually say BigDaddy)

The News. Because they found a donor so quickly (it took under 2 months—most patients wait 2-3 months), the game plan has shifted. The bone marrow biopsy showed stability and little bit of improvement—but not good enough as prep for transplant. The original plan was to continue on BigD until a donor was found, and hopefully by then I would be in remission (ready for transplant). BigD hasn’t been doing the job quite as well as they’d hoped, and rather than continue and wait to see if things improve, it’s better to just pull out the stops and go for it. This is good news. We’re moving closer to getting this thing behind us. It’s just happening faster than I was originally preparing for.

The Plan. (I warn you that here’s where I get a bit more technical/boring. Alas, I have already had to explain it multiple times, so I might as well get it down in writing.) Monday I will begin induction chemo—this is to rid my body of all visible cancer cells (also known as remission). It’s…well, it’s rough stuff. The first week is 7 days of 24hr chemo drip, along with an additional 2-3 hour daily IV push. aka INTRAVENOUS COCKTAILS FOR A WEEK STRAIGHT, are you hearing this? Then I’ll be in recovery post-induction for what may be 6-8 weeks (my immune system will be very weak and risk of infection is high). I WILL be able to take visitors during this time (HOORAY BRING YOUR BODIES AND DANCE/sit/talk/read/wear masks with me). Then I’ll have a week off to come home I guess. After that, I’ll go back in for a week of pre-transplant chemo—ostensibly more intense than its close cousin, induction. Basically we’re sending in troops to search and destroy the immune system that took an evil turn (…HAL?). And then I get a day off. When my transplant doctor was explaining all of this to me a month ago, he said “…and then you’ll get a day off—” after which I chimed in a somewhat lackluster “to party!” while he said something else that sounded similar. “I’m sorry what--?” “To puke your brains out.” After that, we hang a comparatively anticlimactic IV bag of stem cells that are just, you know, gonna save my sorry puking ass. It’s the infantry, come to clean up whatever old immune system is left after the chemo soldiers. They call this my Re-birthday. The waiting game begins as the two sets of DNA duke it out (HAL, give up the ghost). I’ll be in the hospital under scrutiny/immuno-suppressants until blood counts return and they deem I am fit to leave; approx 4-6 weeks. Then of course I climb aboard Spaceship Coupe phase 2 to begin the year-long recovery and immune-system growth, yada yada, you’ll be hearing about it, and this is too long already.

Soon to embark on the craziest escapade of my life so far? Yes. Perhaps never to be surpassed in the crazy.

Operation Soak It All Up. So here I am, sitting in a wooden booth at my favorite bakery, savoring the lasting taste of sugar from my walnut sticky bun and coffee. It’s hard to not think that this is my last week of freedom. But my life will be changed forever once we start this thing. I mean, it’s already been altered—but now the real thing begins.

I consider myself lucky, though. Some people go in for routine blood work and end up in induction chemo that very day. I’ve had a few months to warm up to the idea of cancer (still lukewarm), and now I have a week to savor the deliciousness of my home and the outdoors and all the places I won’t be able to go for a while. I’m trying to make it full of good things, though I have found myself the past two days very unmotivated; even though I want to be filling my time actively, experiencing everything. I cannot deny, there is fear in me.

I am working on committing things to memory. The sun on my back and arms as I walk to the Laundromat. The smell of AJ King. That elderly woman’s platinum pink hair. Sitting and writing in a public place. The Bash on Saturday. Hannah’s song that is playing in my head. The painted chairs and upholstery and cushions, the Persian rugs and tapestries, the eclectic lamps and books and tables. Shel Silverstein. The multi-headed camping trip, Eric being buried in sand, What Not To Expose to Our Son. Carrot cake and climbing mountains. Bracing for the fall, the universe dividing. Rilke. Goodnight mush. A floppy crown, standing on chairs, a tiny narrator clearing her throat. The moon. Laughing. Crying. Covering my face. Listening. Loving. Overflowing.

It may be that when we no longer know what to

do

we have come to our real work,

and that when we no longer know which way to

go

we have come to our real journey.

The mind that is not baffled is not employed,

The impeded stream is the one that sings.

-Wendell Berry, “The Real Work” from Standing by Words

Star Command to Spaceship Coupe: Launch Status Granted.