Scribbles Shine Light on Year After Transplant

You might think your junk drawer is full of, well, junk, but its contents can actually be worth a lot.

It was in my junk shelf – for papers that I mean to get to – that I found a buried treasure, a small notebook in which scribbled notes reminded me what I went through and how I coped in the year after my fourth stem cell transplant.

Remembering stem cell transplant recovery

I figure it was 2009. I must have been in a fog, and writing things down helped me remember them. I’m glad I wrote them down on paper, because if I had done it electronically, they probably would have floated off into the Ethernet.

(Hint: If you are going through blood cancer treatment now, get yourself a small PAPER notebook.)

Managing GVHD

On one page I wrote: “Take 3 rapamune every day.”

Rapamune (generic name sirolimus) is an immunosuppressant used to weaken the body’s immune system so it does not reject the donor’s cells. Said another way, it acts to tamp down Graft vs. Host Disease (GVHD).¹

I also took Prograf (tacrolimus), for the same reason.

Sirolimus and Tacrolimus sounded like the names of characters in Shakespeare play.

After nearly four months in the hospital, I wasn’t feeling chipper. It cheered me up to think of them wearing suits of armor, ready to do battle to protect me.

Rapamune sounded like a damsel in distress.

Diet tips and tricks

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.

There was also food for the soul.

Mindfulness and 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.

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.)

Circling back to 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 re-watched the video (here) and read about how he was exhausted and cramping and thought of quitting. But he dug deep and came up with an amazing shot. And he ended up winning the tournament.

Digging deep is something that a lot of us blood cancer patients have had to do, or still have to do, while living with chronic side effects.

You don’t even have to like tennis to enjoy this interview with him.