A Year’s Anniversary


Yep, it’s been very nearly a year since being diagnosed with acute leukemia in late February 2013. I have tried to be faithful to each stage through blogging, but this one has been the hardest. I have written this blog entry at least four times. Each manifestation has been different, with distinct tones, funny and light, hopeful, progress report etc. Then I sit and stare at it and erase. I might as well try to catch the wind and make it tangible. Everything in my life feels like it has been dumped out of the drawers and now needs organization and a place to go. That’s how it feels. We watched Captain Phillips last night and when, in the end, the military saves Phillips (Tom Hanks) and kills the Somalis and he is curled up into himself, in shock, and barely able to talk, I thought “I’ve looked like that so many times”. A part of me still does. Every time I came home from the hospital.

That is the dark of it—the memories. We draw in our breaths, waiting for the other shoe to drop, like it has so many times. At the same time, the progress is steady and real. We visit friends and entertain here. I wake up feeling good. I can even do something as normal and amazing as take a shower unencumbered by all the plastic needed to protect the Hickman. This piece of technology that I literally wore into my body so I didn’t have to punctured every time I got chemo for medication or blood and for the seemingly endless blood draws, has finally been removed. Standing under the flow of running warm water is indeed such a miracle. So . . . pause, drum roll, hooray! Triple knock on wood.


My hair is fuzzy, like a downy young bird’s feathers, still mostly dark, sprinkled with white too frequent to be negligible but not enough to dominate. Since it started growing first on top, I have a bit of a Mohawk, and Steve calls me Tweety Bird. The Cytomegalovirus is gone (a sign that Mariya’s immune system is working) and I am gradually being weaned off immune system suppressing drugs with no flares of Graft Versus Host Disease. For someone who had to sit down right on the road more than once to be able to make it down to our beach and back (about a mile roundtrip), my ability to walk easily now is another marvel. I now weigh about 110 pounds, enough to feel the roundness of hip again when I lay down, a lovely thing, and a reminder of being a woman instead of a skeletal 97 lb. girl.

Mariya has come to be with us for a month. She is our yoga teacher and helper/motivator in all things. Every morning we do yoga in the living room, all four of us. Jack’s yoga consists of one downward dog, then a restorative pose he holds for the rest of the session, following his breath in a gentle snoring sequence. Our moves are more complex, as we stretch our way out of a year with very little activity.

With her lovely young adult energy, Mariya poked and prodded us out of a lethargy that bordered on depression. That PTSD that had appeared around the edges of my consciousness had been quietly growing as our schedules diminished and the strict focus on medications calmed down. My way of fighting it for months had been distraction, which mostly consisted of hours on the computer, with twin Netflix and Facebook addictions. People would often ask me if I’d been reading. Well, no. I couldn’t concentrate on anything longer than a magazine article, a characteristic, I’m told, common to chemo brains. Now, I celebrate my slow return to books— but for months, during my most isolated days, it was me and many TV series and Youtube shorts keeping me company. For the first week with Mariya, I was horrified to learn that this had become my main topic of conversation as well. The couch, and my two-foot focus on a small screen, had become my most comfortable territory. Distraction and self-soothing were my weapons against PTSD.


Celebrating Kari’s birthday.

Now my practice is different. I’ve learned to “stop the world” regularly, to quote from Castañeda via don Juan. Projects surround Steve and me like puppies competing for their mama’s milk. Every time I sit down, I think of another, long put off item on my to do list. But winter is starting to pass the baton to spring here. The pussy willows are coming out, daffodils are raising their glorious yellow blooms, the male robins are back in fine style. If I died tomorrow, I would have wanted to truly notice this glorious transition. If I am lucky enough to live for many more years, which I no longer take for granted, I want to wade now into this Quickening of island life. Thanks to all of you who believed in this moment and who helped make it a reality.


A surprise serenade on Valentine’s Day!