From Junk Shelf, Notes on Coping with Stem Cell Transplant
You might think your junk drawer is full of, well, junk, but its contents can actually reveal a lot about you.
A junk drawer treasure
I don't actually know what to make of all the stuff in my junk drawer, but I recently found buried treasures in my junk shelf, where I put bills and other papers. It was a small notebook in which I scribbled notes in the year after my fourth stem cell transplant. Looking back, I saw a snippet of what I went through and how I coped.
I didn't write down the date, but I figure it was 2009. After nearly four months in the hospital, I must have been in a fog, and writing things down helped my memory. I’m glad I wrote them down on paper. If I had done it electronically, they probably would have floated off into the Ethernet. And at the time, they would not have stuck in my mind as well as they did.
(Hint: If you are going through blood cancer treatment now, get yourself a small PAPER notebook.)
Notes on side effects
On one page I wrote: “Take 3 rapamune every day.”1
Rapamune (generic name sirolimus) is an immunosuppressant used to weaken the body’s immune system so it does not reject the donor’s cells.1 Said another way, it acts to tamp down Graft vs. Host Disease (GVHD).
I also took Prograf (tacrolimus), for the same reason.2
Sirolimus and Tacrolimus sounded like the names of characters in a Shakespeare play.
I had fun thinking off them wearing suits of armor, ready to do battle to protect me.
Rapamune sounded like a damsel in distress.
Notes on diet
On another page, I wrote, “Swiss chard. Sautee garlic and olive oil, add chard, add tomato, add cannellini beans.”
During the year after transplant, when I couldn’t eat fresh vegetables, it was a challenge to find things that I could eat. Someone must have given me those directions on how to make Swiss chard edible.
And then there was food for the soul.
Notes on meditation
I wrote, “Jon Kabbat Zinn, www.mindfulnesstapes.com, series two.”
It was a reference to a set of guided meditations aimed at helping the listener stay in the present, without ruminating about the past or worrying about the future.
I listened to them to keep my mind from wandering all over the place.
A nurse practitioner who helped me stay calm during chemotherapy, Mary Jane Ott, is the co-author of a paper on mindful meditation for oncology patients.
She must have suggested that I try it. (You can still get them, but now they are in CDs.)3
Notes on tennis
Some time must have passed before I wrote, “Michael Chang serving underhand and defeating Ivan Lendl in 1989.”
I loved tennis so much that I kept a can of balls in my hospital room to remind myself that one day I would get back on the court.
When the time finally came, I didn’t have the strength to serve the regular way. Our coach said to do it underhand. He said that you can put a lot of spin on it to fool your opponent. He told me to look up the video of the 17-year-old Chinese-American player Chang beating World Number 1 Lendl in the fourth round of the 1989 French Open. I did it and was impressed.
In an interview, Chang said he was exhausted and cramping and considered quitting as the match wore on. But he dug deep and came up with an amazing shot. And he ended up winning the tournament.
In some ways it’s a lesson for us all.
You don’t have to like tennis to enjoy this interview with him.
What type of blood cancer are you or your loved one diagnosed with?