Reed’s Story

Reed passed away on June 28, 2008. This is his story as he shared it in 2007.

Ewing’s sarcoma at the pelvis
Age at Diagnosis: 44
Date of Diagnosis: 2006
Location: Columbia, Missouri, United States
Surgeon: Howard Rosenthal of the Mid-America Sarcoma Institute
Oncology Team: Anderson, Miller, and Westgate at Ellis Fischel Cancer Center

Diagnosis: 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.]

Treatment: 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.

Recovery: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.

Life Now: 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.

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Editor’s note: Reed shared his story with us in July 2007. In November 2007, he wrote and explained that he was dealing with a recurrence. He also shared a fascinating story about his work that is published here.

After his recurrence, Reed took two rounds of palliative chemotherapy, and was hospitalized with a near-fatal case of pneumonia as a result. Even though the chemo seemed to be holding the cancer at bay, he decided that he didn’t want to spend his final months in and out of the hospital. Therefore as of mid-February, he ceased all chemotherapy.

For almost three months, he had a relatively comfortable time at home under the care of his wife Oona and his home health nurse, Stephanie Wriedt. He was able to receive visitors, keep up correspondence, wrap up additional work, and see his son turn 10. Except for a short but very successful round of palliative radiation to address a brain metastasis that was affecting his eyesight, he had no more treatment of any sort.

He enrolled himself in hospice care at the end of May, began to decline quickly after that. He succumbed to the Ewing’s Sarcoma at his home on early Saturday morning, 28 June 2008, at 4:30 a.m. He is survived by his son Lucas, his wife Oona, his parents Gwen and Harold, and his siblings Rose, Neal, and Rance, and their respective families.