Life on the Edge

Yesterday was clinic day at Dana-Farber. I was having a good day; in fact, it was the second good day in a row. I was thinking, if I feel this way, my blood work will surely reflect it. But as I'm sitting there in this huge waiting room filled with transplant patients in various states of mobility and health, all of them masked and gloved (as am I), I suddenly have a moment of pure panic. My body has fooled me before. Leukemia itself has never actually made me feel sick, so what do I know about the relationship between how I feel and what evil lurks within? Maybe the graft is failing and my blood counts are plunging into the basement. I have my anti-anxiety meds with me. I could pop one right now and feel calmer in a few minutes, or I can continue to fret until I see the doctor. By now I've learned that drugs are my friends, so I go for it. Pavlovian conditioning means I feel better immediately, before the pill even dissolves. If the news is bad, I will handle it with equanimity. I'll have a breakdown later.

But the news is not bad. My counts are creeping up (expected with baby blood) and I don't need a transfusion. Good news indeed. I've survived to live another week on the edge.

One thing I've learned about this nasty disease is that one minute you're fine, the next you're in ICU. A woman I know through the blogosphere, who's 130-something days post transplant (double cord, just like me so I follow her progress like it's my own; plus she's sent me highly supportive emails, which I deeply appreciate), is back in the hospital. She was doing really well, and boom, she develops a fever and is now being dosed with antibiotics and tested up the kazoo. Post-transplant patients like us have virtually no immune systems, and life-threatening germs are EVERYWHERE. Just getting up in the morning is a potential health hazard. I should probably be wearing a haz-mat suit when I enter my kitchen. I accept that all we are is dust in the wind, but that dust can kill me.

Okay take a deep breath; release. Repeat. I just wanted to give you an idea of what lurks in the back of my mind all the time. Most days I do a reasonable balancing act on this razor edge, taking special care not to cut myself because I might not have enough platelets to staunch the flow of blood. I'm confident that if I should fall, my doctors will use everything in their arsenal to put me back together again. People do survive transplants, and I'm sure I will, too. Except when I'm not sure.

Sending healing thoughts to my blogging buddy in Houston.