985 Down

In July of 2006, with the diagnosis of Wegener’s still fresh on the page, we discovered both my legs and my lungs were filled with an uncountable number of blood clots. Well, one was easy to count—it ran the entire length of my right thigh and was the thickness of my pinky.

(Though I read all my medical reports and viewed all the other diagnostic films along the way, I would not find the courage to look at the images of that CT scan for almost 2 years. When I finally did, I couldn’t stop crying. It sounds cliché to say it was there in black and white. But it’s true—it was physical evidence that I had not dreamed that terrible nightmare, and also that I was a walking miracle. Not one of those clots went to my brain or my heart, though most had lived in me for 3 weeks by the time they were discovered.)

So, with lungs still hemorrhaging, I began blood thinners for the clots. My doctor was an ICU veteran who’d never had to do such a thing before and was sure I’d never survive it. But I had the ultimate ace in my corner : Jetsunma Ahkon Lhamo, my lama. Through her extraordinary prayers, she kept me alive and intact. She asked our sangha to dedicate their prayers to me and to circumambulate the stupas on my behalf. Even the doctors acknowledged they had no medical explanation for how I made it through.

Within a couple months I got new clots and had to switch from coumadin to daily heparin injections. First thing every morning and last thing every night, I gave myself the shot in my abdomen. It’s famously painful. It didn’t matter how I felt that day—migraine, vomiting, too weak to stand, in complete emotional collapse, all of the above—the needle had to go in. I was thrilled to eventually reduce it to one shot per day.

Last week my new hematologist at Johns Hopkins said I’ll have to stay on blood thinners the rest of my life. I don’t know why it hit so hard to hear that. I mean, Wegener’s is not curable either. Yet this was the first time my ears heard, “For life.” It’s a place I’ll sit for a day or two, but I won’t set down roots in it. Nothing is permanent, after all.

Besides, we had decisions to make. I’ve already been on the injections too long. They leach bone at an alarming rate and at $4,000 a month, they leach my health insurance, too. So I’m back to coumadin. No painful shot, but it makes life more difficult in ways the shot did not.

It’s hard to know whether—or what—to celebrate.

Looking at karma purely in a linear way, right now I guess I’m just glad to have 985 spears behind me.