Friday, December 14, 2012

Day 181 - six months out

Today makes exactly six months since my diagnosis. At this time on June 15 (tomorrow will be six months by dates, today by days), Terry and I were driving up to Lebanon, feeling shell shocked. I had had my bone marrow earlier in the day and just gotten my hair cut. In another couple of hours, I'd be meeting Dr. Hill. What a scary, overwhelming, numbing day it was. To make it even worse, it was the day after Terry's birthday and Ellie's first day of summer vacation.

I had stayed home from work that day and called the people who really needed to know right away to tell them I might have leukemia (mostly my various bosses and office manager). It looked at first like the problem may have been bone marrow suppression and I remember googling and seeing that almost everything I was taking could cause bone marrow suppression (zyrtec, singulair). When Dr. Reem Shafeh, my PCP, called to tell me that the initial confirmatory tests were consistent with leukemia, I was quite surprised. I had myself totally convinced it was all medication side effect. Terry drove back from his studio and then we went to Manchester where I had my first bone marrow biopsy. He talks about how everything had changed in the time from when he drove up to Kittery and when he drove back home. The people at the Norris Cotton were so kind, whisking me into a back room, doing the procedure very sensitively, freeing a lab tech to run the slides over to CMC, distracting me for ages while we waited for Dr. Sanford to read the slides. I'm not sure we had any sensible questions to ask after we got the diagnosis; the whole thing was such a fast forward blur. The only thing I remember asking was if I would lose my hair. I really felt like I didn't want to lose my hair to leukemia; I was going to get it cut before the leukemia could take it. On the way home, Terry called his hair cutter and she actually called her last appointment and explained the situation and asked her to come in half an hour later so she could cut my hair. We told the girls, packed me up and then we all rushed off to the haircut. Afterwards, Terry and I left the girls home while we went to Lebanon. Long ride to stew about what the heck was going on. I was perfectly healthy and had been sure that the cancer I would end up with was breast cancer. What was I doing with a blood disease that old people get? that I knew next to nothing about? in my forties? when I was so busy and had lots of other plans?

That day in some ways feels so recent, some of its details seem sharp and clear, but most are completely fuzzy. Last summer was supposed to be the summer that Ellie and I had a really good time. In fact, I had scheduled a lot (for me) of time off and we had reservations to go kayakking the Tuesday I got my last dose of donarubicin. Needless to say, we didn't go. I think I missed my window for kayakking with Ellie. I hope we can find something fun to do together this summer.

From the past to the future and now, to the present. It was CHH Christmas party day today. I went and had a marvelous time, scoring a pair of fabulous tatted stars. Don't know what tatting is? Follow the link; it's super cool. As always, it's so fun to go by the hospice house and see everyone.  I always feel recharged. I had a classic middle aged experience while I was there. I met the new priest who is three years out of seminary and I thought, "there is no way he is old enough to be a priest." It is very odd he is "Father" Chris--Father? He could almost be my son. It has been a while since I had that experience. There used to be a doctor in Exeter about whom one of my patients said, "Don't you have to be old enough to shave to go to med school?" I was reminded about how I cultivated my first gray hairs when they showed up a few years ago. Now I no longer need my gray hair to avoid looking like a pipsqueak.

Next stop: the administrative office of home health and hospice to say hi. Then, I visited Tanya and helped her with her loom. An observation: I was willing to just sit next to her and stare into space while she pulled 24 threads through the heddles and then again while she pulled them through their dents. Prior to the leukemia, I would not have been able to do that. I would have jumped up and wandered through the building or taken Tanya up on the offer to show me how to make a centerpiece. Now, I can sit quietly and wait. It wasn't even like I had anything in particular to think about. Being a patient has evidently made me (ahem) more patient. On the way out, her landlord said hi and somehow got to telling us about his brother, "I once had a brother who didn't do anything but complain. I used to tell him that we are living in the most wonderful time and place ever and how could he be anything but happy?" He also told us that the mill building in which Tanya has her studio is essentially unchanged "since Lincoln was shot." Two old New Englanders in one week. A recent record for me. When I was a PCP in Exeter, I would see at least one old New Englander in each half day. I miss that part of practicing in Exeter. The final bit of today's news is that Emily is home for the next month or so. We are very happy to see her, Maggie included.

Here is a really beautiful six minute video about memory loss. It is embedded in a blog post by Robert Krulwich, a science journalist whose work I admire.

For me, for tomorrow, I will wish for some happy, relaxed family time. No crises, no surprise hair cuts, just a Christmas tree and a celebratory dinner. For you, I will wish a happy day without unpleasant surprises.

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