Wandering

May 18th, 2010

Someone asked me recently how I reconcile my professional life as a social scientist with my blogging persona, ChemoBabe, cancer warrior and superhero. It’s funny because they are, in fact, intimately connected. Part of my way of coping with everything in my life has been to apply my deep curiosity about the world in any new situation I find myself in. In my professional research, I use methodologies that ensure some level of rigor and objectivity. On my blog, I find myself exploring the world in a different mode. I have some conceptual tools in my backpocket that come out of my social science background that I can then apply to my new and strange lived experience. What I write on my blog is not a replicable experiment nor my usual project of a fully developed comparative case study. But I am learning as I am living. And I am having to make extremely consequential choices based on what I know and understand, despite the limitations and subjective quality of that knowledge.

In writing about what I learn, I am allowing myself to report the strangeness and particularity of my subjective experience. I don’t know if my questioner wondered about the seeming contradiction between Social Scientist and Blogger because I publicly take a subjective stance. I know, even as a researcher, that objectivity is not whole.  Objectivity leaves out a lot of our lived experiences and is limited to what we can report rigorously through the limits of our perceptions and the tools we have to document them. Subjectivity has something to offer. I have found that human understanding can be a relief to others. People have told me that they recognize themselves in what I write, or they see how they are different, and they arrive at a different, deeper understanding of their experience.

I think the knowledge I help cultivate through my blog is a more philosophical. I try to provide the perspectives and meanings through reflective engagement. The struggle to confront pain and mortality is fundamentally a spiritual struggle, so those frameworks also come out as I try to make sense of what is happening to me.

This seems to be a way to deal with how much is uncomfortably unknown and unknowable during cancer treatment and beyond. Last night in our family support group, a woman reported how she found significance and hope in the date of her stem cell transplant. It had been on 10/10, which reminded her of the 10-point scale they use to evaluate donor matches. So far, she has had no graft-versus-host issues. She acknowledged the superstition of ascribing meaning to her transplant date, yet it still clearly brought her comfort. We look for meaning where we can find it.

Despite all my rational, empirical inclinations, I share this need to find greater meaning in my experience. So here’s my latest.

When I originally scheduled my mastectomies, the nice lady on the phone gave me a few dates that fell within my oncologist’s timeframe and my surgeon’s schedule. I picked April 1. I told my friends that I would be an April Fool losing my breasts. Then, the plans got upset. The surgeon turned out to be a jerk, more so than I could tolerate. I found an equally skilled and more compassionate surgeon, but he needed to move my surgery date because he was going out of town. There was only one available date, March 29, the first night of Passover. So instead of joking about being an April Fool, I kidded that I went into the hospital like challah and came out like matzah. (In addition to curiosity, humor is a major coping strategy for me.)

The Plan was for me to heal from surgery and start my 6 ½ week course of radiation four to six weeks afterward. While my strength and mobility were excellent after surgery, my pain and healing were not. I had a couple of seromas that needed additional draining, so I did not even have my drains out until a month after surgery. When I met with the radiation oncologist, she wanted me to wait an additional week to make sure that my incisions had fully healed. I would come back the following week to get set up and we would start the treatment.

That weekend, the flood came. The radiation oncology clinic was housed in the basement of the hospital and, by the time the rain stopped, it was under three feet of water.  Patients had to be diverted to satellite clinics in the suburbs. Technicians started working extra shifts, seeing people from 6 AM to midnight. By the time they scheduled me, my treatment was delayed by over a week. Now, seven weeks after my surgery, I begin radiation tonight.

The weird thing is that tonight is another Big Jewish Holiday. There are only a handful of them that are considered holy (and, no, even though I used to explain being Jewish as being “Hanukkah,” that is not one of them). What is weirder still, Passover and Shavuot are connected through a practice of counting of the 49 days in between. Narratively, Passover and Shavuot correspond to the Jews’ liberation from Egyptian slavery and the handing down of the Commandments and the Torah at Sinai, with the days in between corresponding to the difficult time wandering in the desert. Passover gave freedom, but the Torah gave an identity and purpose to the Jewish people.

Jews are supposed to “count the omer” each day between the first seder and Shavuot, a practice that has been interpreted in different ways. I learned the mystical Kabbalistic interpretation, where, each day, you are supposed to meditate on 49 different characteristics that you want to cultivate to become a better person. The Jewish calendar has agrarian roots, so there was a way that ancient Jews held their breath during this period hoping for a bountiful harvest. (“Omer” is actually a unit of measure for grain.) Metaphorically, the counting and enumerating on the qualities one wants to develop should  provide for a personal harvest of a strengthened character. There are other traditions that have equally eerie resonances for my circumstances. For example, these days are supposed to be a period of semi-mourning where no weddings are celebrated, no live music enjoyed.

I have definitely been thrown into a period of semi-mourning. I celebrate my improved prognosis but mourn my forever-changed body. Although I did not count the omer this year, I have been digging deep as I try to retain and cultivate my best self despite the challenges and pain that I face.

My treatment is at 9:30 PM tonight, when many of my Jewish friends will be at the synagogue trying to reap the spiritual harvest of the work of the past 7 weeks through all-night study sessions. What meaning do I find in all of this? My surgery freed me from the last detectable remnants of cancer. I have been wandering in the emotional desert of my survivorship the past 49 days, not sure of who I am in the face of a completely novel circumstance. Maybe, tonight,  I can begin to learn what this means for my identity and purpose in this world.

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This entry was posted on Tuesday, May 18th, 2010 at 8:51 am and is filed under Treatment, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.