Update October 2007:
In late January 2006, I left Missouri for two months of fieldwork in Indonesia with a growing tumor in my right pelvis. That hip had been stiff and hurting off and on for quite awhile (over a year at least), but everyone assumed it was muscle/exercise related. (The stretching exercises did seem to help for awhile so no one thought anything of it.) During my time in the field, however, the cancer decided to accelerate its growth; I can’t recall a more uncomfortable and sometimes excruciating field experience as it began mashing rather unrelentingly on my sciatic nerve, making it painful to walk very far.
On my return home in early April, my wife and I went to a sports doctor, still assuming it to be muscular, but were urgently referred to Dr Marc Miller at Ellis Fischel Cancer Center (EFCC) here in Columbia – probably one of the most underrated cancer centers in the country and a wonderful facility with many caring and competent nurses and doctors. He was certain that the tumor was some sort of sarcoma, and a biopsy confirmed it as Ewing’s sarcoma. (At 44, I was on the “old” side of the stats for this cancer which normally hits teenage males.)
My case was taken up by Dr Clay Anderson and Mary Cunningham (who also established a palliative care practice, of which thankfully I have not had to avail myself), and by early May I began a year-long regime of chemotherapy (alternating cycles of vincristine / doxorubicin / cyclophosphamide and ifosfamide / etoposide). (The first thing that fell out was my beard, then the rest of my hair from head to toe!) And the tumor, which had extruded from the pelvic bone and grown to melon-size, actually dissolved during the very first couple rounds of chemo – “like melted butter,” as one of the medical fellows said. (I will never look at butter quite the same.) Then came six weeks of radiation in October – linear-accelerated X-ray/IMRT at 2 Gy or 200 RADs (don’t ask me: I didn’t understand it then either) – administered by Dr Stephen Westgate at EFCC.
In late January 2007, I went through surgery – a hemipelvectomy, to be exact, with reconstruction (meaning most of my upper right pelvis was cut out and a graft from my right fibula was inserted). For this we went to Menorah Medical Center in Overland Park, KS where Dr Howard Rosenthal has his Mid-America Sarcoma Institute practice. As with EFCC, the Sarcoma Institute is a gem of expertise and caring; I feel most fortunate that Dr Miller referred us there.
After surgery and some recuperation at Menorah, I was transferred back to Columbia and stayed at the Rusk Rehabilitation facility for in-patient physical therapy for two and a half weeks. (I might have enjoyed my stay there a bit more had I gotten a room with a window, but at least I had a very entertaining roommate.) After being discharged from Rusk, I finished up my chemotherapy (three final rounds), and then went back to Rusk for out-patient therapy during the summer of 2007 – to get my muscles working enough so I could walk on my own again.
I am now in that long and uncertain period of continual monitoring, for years to come. Bone is regrowing into the gap left by the surgery; in fact, it had started to grow during the last bit of chemotherapy (something that Dr Rosenthal was surprised to see given the negative effect of chemo on cell growth). And I am making slow but steady progress in walking.
Throughout this experience, which has included bright spots (such as the nurses and therapists of EFCC, Menorah, and Rusk) and (perhaps inevitable) despair and depression, I have had tremendous support from family and friends around the world, from Missouri to Borneo, but especially my wife and son, and the MU Department of Anthropology across the board. I doubt I would have come through it as well as I have without them holding me up along the way.
Update October 2007:
Some useful links:
- Adult Bone Cancer Survivors
- Sarcoma Alliance (a general pit stop)
- SarcomaNet (at the Dana Farber Institute)
- Sarcoma Foundation of America
- Sarcoma – a medical journal
- Liddy Shriver Sarcoma Initiative
- The median isn’t the message, by Stephen Jay Gould
- High Pelvic Amputation Help
- Livestrong – the Lance Armstrong Foundation, with support materials
Research :: Publications
:: Teaching :: Student
Opportunities
Images :: Links
:: C.V. :: Home
Anthropology Department :: College
of Arts & Science :: University of
Missouri-Columbia
revised: spring 2008
Copyright © The
Curators of the University of Missouri
Web Information