It is more important to know what sort of person has a disease than to know what sort of disease a person has.
—Hippocrates, Greek physician, ca. 460 BCE–377 BCE
A few months into my cancer odyssey, I came across this quotation by the “Father of Medicine.” Pondering it, I wondered whether the medical staff treating me at one of the local cancer-treatment facilities had any idea what sort of person had my disease. From my inexperienced perspective, in defining what they could do for me, it seemed they were constrained to applying an extremely limited medical model despite its complexities and high costs. When I asked about the basis of the so-called “standard of care,” I was told that my chemotherapy dosage, for example, would be calculated by using a bell curve analysis. I had no idea where I fit into the bell curve.
On May 23, 2006, the day after my elderly parents arrived at my home for a two-week visit, my life was irreversibly changed. I received a phone call, informing me that the result of my recent biopsy was positive, confirming that the palpable lump in my right breast was invasive ductal adenocarcinoma, estrogen- and progesterone-receptor positive, and roughly 2 cm in diameter. I accepted the news calmly, knowing I would have to gently tell my parents. I was hoping to wait a few days, so their visit would not be disrupted so soon after their arrival. That plan evaporated within minutes when my mother, reading my appointment calendar—posted on the refrigerator—asked, “Susan, what is this ‘biopsy’ ”? I told her what I had just learned and, later, when my dad was helping me plant a sapling in the front yard, I told him. My life and their visit were turned upside down with the gravity of the news and the appointments I had to go to.
Subsequent scans revealed that I actually had four masses, three in the right breast and one in the left. A clinical examination estimated the 2 cm tumor to be closer to 6 cm, too large for a lumpectomy. I was then told that I would be a good “candidate” for adjuvant chemotherapy. Candidate? Was there an upcoming vote that no one told me about?
With one remaining class in my graduate program at the University of New Mexico, my cancer seemed to me to be annoyingly ill-timed. In my skewed thinking, I urged the oncologist to expedite my course of treatments, so I could return to UNM by the fall term. His irritation was evident when he said, with stunning calm and brevity, that he would not work with me if I could not set proper priorities. He got my attention, and I started to focus on the task of healing through cancer.
Still, my initial position regarding treatment options was, “I will not do chemo.” The surgeon told me that my tumors would likely metastasize without chemo. She suggested that cancer cells had likely already started traveling throughout my body. The oncologist told me that tumor-excision surgery would be less radical by first shrinking the tumors with chemo drugs. Facing a diagnosis of multitumor cancer was hard enough; facing chemo was, at first, outside the bounds of my rational mind. But once I grasped that I had a systemic illness, I understood that I needed a systemic remedy. At this early point in my cancer odyssey, I was unaware of other systemic options, so I agreed to do chemo. I asked my oncologist, “If either your wife or your daughter had cancer and chemo was ordered as a necessary treatment, what would you recommend she do?” He said, “That’s not a fair question.” I said it was, but he did not answer me.
Even after I agreed to do chemo, the surgeon—distinguished at the time for performing most breast cancer surgeries in New Mexico—told me I could expect to have a double mastectomy and, if I wanted, I could have reconstructive surgery, which my insurance would cover. Before I grasped the enormity of my situation or the treatment options, I seriously considered the possibility of undergoing radical surgery and reconstruction. With so many decisions being hurled at me in those early weeks, I now realize I was unable to sanely process everything. I was in an alien mental zone.
In late June, I met with the assigned plastic surgeon, who explained post-mastectomy tissue-expander breast reconstruction. Because I had insufficient belly fat, he would take tissue from my upper back and wrap it underneath the tissue in my armpit, to create new breasts. I asked, as a point of clarification, “You’re planning to make a dent in my back, to build up my front?” The plastic surgeon calmly said yes. Visualizing my planned disfigurement, through tears I said I would not do Frankenstein surgery. He looked genuinely confused that I was upset. By early July, I was in mental overload as I contemplated the array of—in my mind—surreal treatment options.
In early 2006, months before my diagnosis, I bought a used copy of Thomas Moore’s book Dark Nights of the Soul (2004), the title of which references the title of a poem by 16th-century mystic John of the Cross. In June, I located the book in my home library and decided that the subtitle, A Guide to Finding Your Way Through Life’s Ordeals, was a perfect convergence of content and need. I read the author’s elegant interpretation of the emotional dark night, not as the soul’s enemy but as a time of personal growth and meaningful transformation. His relevant words, the first of many I read during my journey, illuminated my path and offered clarifying insights on philosophical questions, emotional obstacles, and spiritual contentment.
Also in June, I started going to a doctor of oriental medicine for weekly acupuncture treatments and Chinese herbs. The D.O.M., who spent a large part of each appointment asking me questions about me—to get to know the person with the disease—told me that, given a choice between chemo and radical surgery, he recommended chemo because acupuncture would flush the toxic drugs out of my system but surgery would be a trauma to my body and my mind.
During my office visits, we talked about the intricacies of Traditional Chinese Medicine, which is based on a Daoist philosophical understanding of the universe and the human body. Developed over thousands of years to treat the patient and not the disease, TCM has no counterpart in Western medicine but is gaining recognition among Western practitioners as a complementary modality. According to TCM, each organ of the body is part of an organ system, interconnected by meridians (channels) and part of an overall energetic system that is connected to the universe. Poor diet, lack of rest, trauma, stress, or other causes create systemic imbalances, often resulting in disease. By inserting fine needles into specific points along the body’s meridians, energy is enhanced to promote systemic healing. Although somewhat familiar with TCM, I had never had acupuncture or sufficiently understood its complex beauty and constructive manner of healing. I looked forward to my “needling” and to our in-office conversations, which were less about my disease and more about helping me understand how to effectively and gently rebuild my body’s severely broken immune system and, in parallel, regain balance in my life.
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