This is the 11th in an ongoing series of posts bringing a critical sociological and feminist lens to my own experiences with endometrial cancer.

I just returned home from what should have been a no-stress vacation. But, as I am learning the hard way, Cancer Land is never stress-free. After seven gorgeous days at the beach and rainforests of Costa Rica, I – together with a zillion other travelers — found myself stranded in Fort Lauderdale due to the blizzard that hit New England the day we were scheduled to fly home. There are worse places to be than Florida when the Boston area is covered in two feet of snow. But not even the sandy beaches and excellent Cuban coffee of south Florida could block my concern about missing my upcoming immunotherapy treatment – or my despair at not managing to talk about this with anyone at Dana Farber Cancer Center. 

Treatment times are optimized for effectiveness, and I worried that the delay might impact how well the treatment works. I wondered if Dana Farber had a relationship with a hospital in Florida where I could get the infusion, or if I should come straight to Dana Farber as soon as we could get back to Boston. I called and wrote several times but did not receive a response from my oncology care team. (Care teams are the changing rota of nurses and assistants who work with the oncologist. I’ve never met any members of “my” care team face-to-face and while all are pleasant on the phone, I’ve rarely spoken with the same person more than once.) The only response was from a scheduler who rebooked my appointment for the following week – seven days later than the original appointment and five days after my return to Boston. I asked if the doctor said that this delay is okay and was told that “she didn’t say it wasn’t.” And that was that.

Over the next week family, friends, and kind strangers were subjected to my constant tears and rants. “Some assistant probably grabbed the doctor in the corridor between appointments and asked a generic question. Does the doctor know what she was okaying and that it was for me?” And “How do I know that other decisions are made more thoughtfully?” And with sadness, “I feel invisible – like I don’t even exist in this world.” I’d like to be able to say that I calmed down after a few tirades along these lines. I didn’t.

Writing this post is part of my effort to understand why I was frantically upset by this (probably minor) setback.

Human-ness at Risk

Fears of disappearing, of loss of self, of becoming irrelevant and eternally unheard and unseen, haunt many of us diagnosed with a terminal illness. This is noted in the academic literature and hospice brochures. It emerged in an unexpected way in studies I conducted several decades ago with Israeli women in treatment or recently treated for breast cancer.

In lengthy, open-ended interviews, I asked 120 participants to tell me about what had been hardest and what had been helpful during their breast cancer treatments from the first hint that something was wrong until the present time. This was in the days before pink ribbons and real or ersatz communities of ‘breast cancer warriors’, before the days of fashionable bathing suits for post-mastectomy women, and more importantly the days before the wonder-drug Zofran mostly eliminated the horrific puking caused by chemotherapy. My expectation was that most women would name uncertainty, pain, nausea, physical deformity, or social stigma as the hardest parts of breast cancer, and gratitude for advanced medical treatment and / or their personal religious faith as most helpful.

However, to my surprise (at the time), the themes most often raised by the women centered on their struggles to hold onto their identities as complete human beings during a period in which body, spirit, and social identity are undergoing intense transformations. Giving oneself over to treatments that involve the dismembering of the body in the context of a medical culture led many of the women to think about what it means to be human. Facing the distinct possibility of death – and that is the meaning of a breast cancer diagnosis – they were vitally concerned with maintaining their humanity and spoke passionately about how medical staff (who had become central to their lives) reinforced or undermined their efforts. 

I often heard comments like: “It’s hard when they [the medical staff] give you the feeling that you are not a human being, that they don’t care at all, when they let you sit and wait for hours and when they give rude answers to your questions.” One woman explained, “We are in a very sensitive condition. The meaning of the disease [cancer] is as if an X has been put on you and you are sentenced to death. In that condition you expect ‘humanity’ (enoshiyut) from the medical staff.  We need that. And good yachas makes it easier for the sick person to get through the difficult times.”

Yachas: Caring and the Art of Being Human

Giving and getting yachas were presented by study participants as crucial to being human. The Hebrew word yachas, loosely translated as care, attitude, attention, or relationship, came up in nearly all the conversations. For example, “One doctor had wonderful yachas; he [the doctor] treated me like a human being.” In contrast, another woman commented that she received “terrible yachas; he [the doctor] isn’t human.” 

Women contrasted the good yachas of medical staff who treated them “like human beings” with the bad yachas of staff who treated them like numbers, machines, or strangers – like non-humans.  One woman explained that the hardest moments were when staff related to her “like a number and not a person. Like to a machine that part of it is damaged.” In the words of another woman, “It is important to feel respected and to feel that someone is interested in your situation. That you are not just one of those who have breast cancer – one of thousands of women. In the final analysis, it is a very individual matter.” 

For cancer patients, numbers threaten to encompass one’s entire being. The women I interviewed thirty years ago focused on hospital interactions such as being referred to as “the breast cancer in room five.” Today, when most cancer treatment is outpatient, the salient numbers are cancer stages: I,II,III,IV and their alphabetic sub-stages (in my case, stage III-A), numerical indicators on blood tests, size indicators on CT scans, and the numbers patients need to punch into the endless phone menus to be able to leave a message for the “care team.”

Good yachas encompasses reciprocal relationships that go beyond the purely medical or bureaucratic, acknowledging that each person has unique personal histories, preferences, and opinions outside of the medical encounter. One woman singled out the doctor who “gave me his personal phone number at home and said that it is always possible to call” as exceptionally helpful during a difficult period. The doctor appreciated that she has worries and concerns outside of the scheduled time in which she is an official patient and he is on the clock as a provider. Another woman recalled that, “They were really nice on the ward. The nurses in oncology remembered that I prefer to lie down during the treatment and they let me [do so] each time I came”. Any kind of acknowledgment of outside identities was praised. For one woman, the most helpful person she encountered over months of harsh cancer treatment was “One nurse who sat with me before the surgery and we talked about our favorite movies. I told her mine and she told me hers. It was mutual. It was human.” 

Still Human

Am I truly worried about losing my human-ness? Yes and no. On the one hand, I still can write blogs like this one in which I assert my identity as an academic with strong opinions and research expertise. On the other hand, I still have not been able to speak with anyone at Dana Farber regarding my concerns about delaying treatment – a lapse that has led me to fantasies of putting a sign on my grave with the words: “You no longer need to bother calling me back” or hooking up a sound system inside my coffin blaring “I am still a human being.”

As a sociologist, I understand that hospitals are understaffed and that insurance companies control everything from the amount of time a doctor can spend with a patient to the specific medications that are approved or denied. Still, as a patient I want to remind even the most over-worked staff that we cancer patients are facing mortality and rely on everyone from the check-in clerk to the medical director to recognize our humanity. Without that acknowledgment we are, as one woman in the study said, “like one who is already dead.”

Acknowledgments

Thank you Debra Cash for helping me clarify my thoughts and present them in a way that makes sense to other human beings!

You can read more about the study described in this post here: Susan Sered and Ephraim Tabory. 1999. “You are a number, not a human being”: Israeli breast cancer patients’ experiences with the medical establishment. Medical Anthropology Quarterly. Pp. 223-52. PMID: 10440031.