I had my clinic visit today instead of my usual Monday.
I started the day by meeting nurse practitioner Mary Jane Ott for Reiki at Dana-Farber's Zakim Center for Integrative Therapies, in keeping with the plan that many people have: Try to add a little something nice onto your clinic visit. I’m not exactly sure how Reiki works, but I do know that it makes me sit still and concentrate on my breath. When we're done, I always feel more relaxed.
I expected my counts to be down, and sure enough, they were, because I am still taking four tablets a day of Valcyte to combat the CMV, or (cytomegalovirus), which affects people with weakened immune systems.
White count was down to 1.5 (after I was so happy to get into the 3’s just weeks ago), and platelets were down to 90, the first time in a long time that they dipped below 100. My hematocrit held steady at 30.3.
Dr. Alyea said he was sure it was from the Valcyte. Since I’ve seen the same thing happen when taking this drug before, I wasn't worried.
But I was not happy, either. Lower counts are not anyone's fault, but when I look at the printout, I somehow feel like I failed a test. I would rather be like the proud kid who puts his or her report card on the fridge. Instead, the printout is stuffed in my bag.
Alyea said the virus was responding to the Valcyte, and if I tested negative this week, I could start decreasing. If not, I’ll have to continue, and my counts might even go lower.
He asked me if I was playing tennis, and I said I was taking lessons with our coach, George. We had a short talk about lessons – his golf lessons and my tennis lessons – and both agreed that initially, they can make your game worse, probably because you're thinking too much or trying too hard.
I told him that George didn’t have any pity on me; when I tell him I’m tired, he either advises breathing through my nose because it’s more efficient, or slicing the ball more. “Slicing will get you out of any problem,” is George’s motto.
I thought perhaps that the doctor might disapprove and say that if I was tired, then I should stop. But, he said, “That’s great!”
Once I get going on the tennis topic I sometimes don’t know when to stop. My inner censor told me that there was a waiting room full of patients, and I should stop gabbing. But I was already going, so I also told him that George was making me work hard to forgo my normal forehand in favor of the circle swing, or loop, that is now the preferable motion.
Dr. Alyea wanted to know what a circle swing was. I got up and demonstrated with a full sweep of my arm – a circle – instead of just bringing the racquet back. He looked puzzled and agreed with me that the circle didn't look very efficient.
He ended the visit by telling me to decrease my tacrolimus and sirolimus, adding that if the CMV was gone he or Melissa would call.
As he was walking down the hallway and I headed the other way to the appointment desk, he looked over his shoulder at me and said…drumroll… “I wouldn’t do that circle swing if I were you.”
On the way out, I went to Starbucks for my now-habitual coffee, another post-visit treat. I waited on line next to a fellow masked-and-gloved- person. (By the way, if you’re from New York, you wait ON line; everyone else waits IN line.) I bought a bag of decaf to take home, plus a tall coffee to go. The young masked man asked me what variety. I told him it was espresso.
“I don’t drink Starbucks at home,” he said. “I only get it when I’m out.”
He explained that he used to live in Alaska, where he drank a local brand from the K Bay Café in Homer, Ala. He’s so loyal to the brand, and he likes it so much, that he now orders it by mail.
We left the line and chatted for a few minutes. He is 45 days out of transplant for AML, and he is also being treated by Dr. Alyea. He asked me how far out I am. I’m trying to come up with a quick answer. (“How far out from which transplant?” I want to ask.) Also, I didn't want to even mention the r-word (relapse) in front of this young man who just finished treatment.
So, I said, “I had an auto five years ago and it didn’t stick, so now I’m about 100 days out of my allo.” No need to give him TMI about the graft failure with my first allo and explain that this is my second allo and third transplant overall.
We chatted for a few more minutes about our habit of carefully watching the servers to see if they’ve touched the lid too much, and then wondering if it’s OK to ask for another lid if we’re not happy. Then we wished each other luck and headed back to pick up our cars.
It was nice to be talking to the doctor about tennis swings and to the fellow patient about coffee brands. Just normal things. Nothing life-altering.