update from Zpora

Shingles all the way

Dear Friends,

Happy holidays! I hope you are all in the midst of some good kind of celebration with loved ones and good food.

I have been wanting to write for a while to tell you about the end of chemo (my last pill-taking happened on August 4!) and this latest transition. I've decided to expand the investigation of this transition into the academic realm by writing my thesis about it. Mostly, this has been really good - I've gotten responses from a lot of young adults who are within 2 years of finishing treatment who want to tell their story about what this transition has been like for them. I've had e-mail contact with a number of people who clearly have a lot to say. It's been almost like a ready-made support group. It's also a lot of cancer talk in the time when I finally don't need to be thinking about it all the time. But what I'm realizing is that I probably would anyway - being done treatment does not mean I am done with cancer. It is certainly part of who I am, as I've said in previous messages, and I think how much a part of me I want it to be will ebb and flow.

I've had a really good fall. I got back to North Carolina after finishing my second summer at Smith and set about right away enjoying my chemo-free life - planning weekend trips without taking into account my treatment schedule, drinking wine without worrying about my liver too much, even having a bloody mary, which promptly made me need to take a nap. I've been running a lot to train for a 20-mile race in February and doing lots of yoga to balance my internship at Duke counseling center, which can sometimes stress me out. And not going to the doctor! They really didn't want/need any blood tests just to check!

I had one routine CT scan, which was slightly ambiguous because of an enlarged thymus (apparently typical of people coming off a long course of immuno-suppressing chemo) that could have been another mass in my chest, so it led to a PET scan. Even that wasn't totally conclusive, but I decided not to have another PET until I was due again for a check-up because I felt great and had a lot of confidence that it was just my white blood cells bouncing back, grateful for their ability to reproduce as much as they wanted. It did cause me a couple days of being scared, though, and more thinking about what it is like to be a cancer survivor -- will everything always be a possible recurrence? Will I ever be able to trust my body completely again? At the height of my fretting, I got this quote in an e-mail from the Kripalu listserve (where I did my yoga teacher training):

To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with grace.
--Peter Henry Abrahams, The View From Coyaba

It really struck me - I am never going to get the "all clear for the rest of your life" go ahead. It felt liberating. Sometimes it feels scary, but somehow it relieves me of some of the responsibility of worrying.

I came out to California to spend Christmas with my parents and then New Year's in San Diego, ready to impress everyone with my health and well-being, my strength and vitality, my new-found outlook on life - the Zen cancer survivor. And then I got shingles. Can you believe it? I couldn't. My back started hurting on the plane ride out west, and I thought I had just overdone it with a long run and a yoga mala and an all-around active weekend. But it didn't go away, stretching didn't help, and it got worse. We got in a good walk in Muir Woods on Christmas Day, where I discovered that I couldn't stand still but I could walk without too much discomfort, and that night it got so bad that I couldn't sleep because I couldn't get comfortable. I also started to develop a rash on my lower back and lower abdomen. Hmmm...fishy...Getting sick the day after Christmas, especially if it's a Friday, is a tough time. I found an Urgent Care place in Berkeley that was open and got a doc with his glasses taped together at the bridge to diagnose me with shingles and give me a prescription for Valtrex, an anti-viral that is supposed to shorten the length and severity of symptoms, if not make it go away. Dr. Taped Glasses didn't seem to anticipate the pain of shingles, because he said Advil would be fine for pain relief. Luckily, we scored some Oxycontin on the street corner, which allowed me to sleep, but I spent most of time on Saturday and Sunday on the couch. Any movement I did was only out of necessity and I alternated crawling to the bathroom with walking like a pretty stooped 90-year-old.

So instead of impressing my parents with my health, I was the sickie again, and they were waiting on me! Ah well. This is surely some other lesson, but at this point, I'm still mostly frustrated and disappointed. And covered with an angry blistery rash. But walking upright! I am heading to San Diego to soak up some sun, then back to NC on Friday.

Clearly, cancer will always be a part of me emotionally and mentally, and probably be more of a part of me physically than I'd like to admit, at least for a while. It is hard to hold onto my healthy image of myself since I see just my shingly self when I look in the mirror, but I know I'll be back there soon. And hopefully for longer and longer periods.

One of the women I have been e-mailing with, a 2-time survivor who lives in Georgia and is in her late 20's, wrote me that she has never felt whole again since finishing treatment, that she can't recreate the focus being in treatment gave her. She likened it to a vessel having been shattered with her cancer diagnosis, and now the pieces were put back together so she was functional, but they never fit back together the original way. I too, sometimes miss the intensity of chemo, especially the first 6 months. You have a clear focus, and everything: relationships, eating, walking, reading, is heightened, vibrating with purpose. I remember longing for "normal" things, and then when normal is back, you have to find a way to appreciate and enjoy that. Maybe the thing is that you are never going to be back to the original shape of the container you were - and not the same shape that you took to get through treatment either. So the challenge is finding the new shape, the new design, and getting to know that one. It's been pretty cool to hear about the experience of other survivors, to hear about how their process is similar to and different from mine.

Happy happy new year! I hope 2009 starts off just the way you want it.

Love,
Zpora

The Page of Rainbows

It’s been our practice lately to pull a Tarot card (currently from the Osho Zen Tarot) in the morning as a guide or question for the day. Yesterday, I pulled the Page of Rainbows, the card they call “Adventure”, the image of a little girl trundling eagerly over a rainbow-tinted hill.

Moments later, as if on cue, the Call to Adventure came tapping on Magnolia’s door. It arrived clothed as Michael, one of our new Riparian neighbors and friends. “Anybody want to go skiing?” he asked. Now, it has indeed been chilly in Chico the last few days, dipping down into the 20s at night with reports of snow up toward the Sierras. But the grass is still green here in the Sacramento Valley and there are oranges, grapefruit, and lemons on the trees. California and snow, until yesterday, still didn’t go together for me.

But here was the Page of Rainbows himself, calling me out of my erranding plans for a day of fun. And, it so happened that his partner’s ski boots fit me fine. The sun was shining. I didn’t have to call in sick to work. So why would I refuse?

We had a delightful day of skiing. Just about 45 minutes’ drive east of Chico, up in the foothills near Butte Meadows, there are great X-country trails. The snow was startlingly un-Vermont-like: dry, powdery, 10-12” deep. Michael and I skied across the meadows, his dog Sasha bounding along with us, through the big pines, up to the summit of Colby Mountain. At the top, where we stopped to eat lunch in the sun under the fire tower, Mt. Lassen loomed large and white on the horizon. Having done the long, hard work on the ascent, we zoomed happily down the slope, skiing out as the sun was setting. We drove back to our green valley home in the dark. When we got back to Riparia, I was achy and tired, but quite happy.

The adventure was the choosing, the spontaneous leap into an utterly unexpected day. Despite all our current freedom, it’s something that, surprisingly, I don’t do that often. But from now on, when the Page of Rainbows – in whatever guise he or she shows up -- calls me out to play, I hope I’ll say yes.

P.S. You can enlarge the pictures by clicking on them.

Chico winter

It hasn’t started yet, but everyone refers to a time in the {near?!} future “when it starts raining.” The way people talk around here, I’m a little worried that our imagined winter in northern California might have needed a reality check… I think sunshine and coolish figured more prominently than days of cold rain in our winter scene. Maggie is certainly water tight, BUT we tend toward crazy in extended periods cooped up indoors, especially when our only mode of transportation is by bicycle. http://www.pinkwater.com/pzone/

We’ve been settling in at Riparia – the name of the land and its community of people who have kindly offered space for us to encamp. Lev appears to be having success at discovering Chico’s more Pinkwateresque nooks and crannies. (If you haven’t heard of Daniel Pinkwater, check out one of his many books including The Hoboken Chicken Emergency. If you read The Snarkout Boys and the Avocado of Death, you too will be looking for weird all-night diners that serve baked potatoes!)

The fog has been thick many days and nights – what I would call “pea soup fog” if I were in Vermont. Chico is very near the Sacramento River, a lush and reportedly fertile valley. Certainly there are lush fields growing happy-looking green vegetables all around us. But there hasn’t been rain in months the neighborhood farmers tell us. They’ve been hoping to get a cover crop in without having to irrigate. This morning it was clear and cool. I was making tea wearing a long sleeved t-shirt, flannel shirt, wool sweater and fleece and watching a crew of young “grubbers” (growing resourcefully uniting bellies) digging asparagus trenches stripped down to their skin!

We adjusted the solar panel in an attempt to catch a little more of that increasingly low lying sunshine. Not only are the days getting shorter, the sun’s route across the sky is lower. It’s now appropriately angled atop Magnolia’s roof. Reduced solar generation is another one of those realities that we might have left out of the winter story we’ve been reciting to ourselves. The days getting shorter translate to less electricity generated in solar terms. No doubt we’ll need to adjust our electricity wasting lifestyle too!

leaving Berkeley

Today we are driving away from Berkeley, CA, heading to Chico. We have been in the Bay Area for ten days, enjoying this beautiful place, entertaining Louie and Marcella (Peter's cats), seeing old friends and meeting new ones (see below). Andy's brother Peter and his partner Elizabeth just got back from visiting Elizabeth's family in Paris.

We also made a visit to old family friends - Dylan and Ariana and -- at last! -- got to know their 7-month-old daughter Fiona Billie




A very definite highlight of this time in Berkeley was the art at the "Albany Landfill" (though I'm told it is really called the Albany Bulb - presumably because of its shape sticking out in the bay). It is a glorious place to watch the sunset. It is literally a dump site of old freeways gone bad - concrete of all shapes and sizes, rebar and industrial paraphernalia. People have been making art with it for years. Wandering the many paths, we discovered one of the encampments of "landfillians."