In mid-January, after a fall on invisible ice, I was informed by an emergency room doctor that my fractured pelvis would heal in six to eight weeks. To help me recover from the injury, therapists started coming to my house. Their ministrations posed a question that nagged at me: why aren’t trained professionals made available to cancer outpatients in the way occupational and physical therapists are routinely assigned to orthopedic patients?
The occupational therapist appeared only a few times, when I was completely incapacitated. With extraordinary tact, she taught me how to unclothe in a narrow bathroom and then positioned me on a bench in the tub where I could use a hand-held shower.
Throughout February, my physical therapist, Sherry, rang the doorbell twice a week, entered as she heard me yell “Come in,” and placed a clean pad under the large bag she put on the floor near the blue couch on which I reclined. Out came the equipment she used to check and record my vital signs. The rituals that followed slowly raised my levels of mobility and confidence.
At the beginning, Sherry suggested ankle pumps and a few stretches. She would watch me rise to the walker and shorten its legs or tell me to change my gait. A week later, she had me move to the bedroom to show me the least painful way to get into or out of the bed. So I could sleep on my side, she propped a pillow between my legs.
Later in February, Sherry taught me the Clamshell: lying on my right side with my knees bent, feet together, I moved my left knee up a few inches. I could feel the muscles strengthening. In early March, she encouraged me to place my hands on the kitchen counter and raise my strong leg off the floor for 20 seconds in a pose I called the Flamingo. Putting weight on my weak leg gave me the sense that I might meet my goals: to graduate onto a cane, go up and down steps and become a functioning biped again.
Not one comparable sequence of instruction occurred during my eight years of cancer treatments, although I was much more incapacitated and traumatized at the start. Reeling with anxiety back in 2008, I never received any professional assistance at home for wounds, edema, neuropathies, fatigue, weakness, eating disorders, drains, elimination problems, rashes, insomnia, infections, a PICC line, and other complications that were especially shocking during the first year after diagnosis. I relied only on family and friends.
What escalated the injury of cancer for me were the passivity medical protocols produced or required. I was knocked out by anesthesiologists, cut up by surgeons, and infused with chemicals by nurses. “The very word ‘patient’ (Latin root, patior, ‘to suffer’) is a giveaway,” the columnist Max Lerner once explained. “Patients suffer things to be done to them, becoming thereby the acted upon, the diminished.”
Cancer patients like me would profit from supportive care aides who could spring us from this induced passivity and its accompanying fear. In my case, such a counselor would have allayed the bewilderment of treatment and also empowered me to exert a modicum of control over the broken rhythms of everyday existence.
Perhaps very wealthy people find and hire staff with the requisite expertise, but it never entered my mind. My new oncologist, Dr. Mina, assures me that breast cancer patients do receive physical therapy after mastectomy to prevent lymphedema. After a massive debunking operation for ovarian cancer, however, no physician or nurse ever hinted at the possibility of my obtaining outpatient therapy. Wouldn’t people with prostate or lung, throat or colorectal cancer prefer to receive help at home than go to the emergency room — a prospect that terrified me?
Sherry’s interventions persuade me that therapists could provide cancer patients a multitude of ideas — on pain management, nutrition options, personal hygiene strategies, psychological and sexual prompts, meditation and massage and workout routines — to ameliorate the harms cancer and its treatments typically cause.
Is this sort of therapy unavailable because insurance companies will not cover it? Or it is unavailable because it brings no profitable returns to hospitals? Yet paid therapists might be less expensive than recurrent E.R. visits as well as the psychic toll exacted by the depression that frequently burdens cancer patients.
Why not use the model of the occupational and physical therapist in orthopedics to create a central role for therapists in oncology, advisers who could help cancer patients help themselves in taking small, strengthening steps? After surgery and at the start of chemotherapy, my family and I would have given anything for the house calls of a creature we never imagined: an oncological therapist.
“What a comfort such a person would have been,” I said to Sherry after one of our sessions. “An oncological therapist might have given me what you give me — a sense of agency.”
Sherry said she had done extensive training in a host of proficiencies that would be useful for cancer patients, as have many of her peers. “Physical and occupational therapists with all sorts of skills pertinent to cancer treatment abound, but to enlist them, specialists in surgery, radiology, and chemotherapy need to think outside their specialization.”
Then she added, “Maybe the oncologists need to be educated.”