Thinking My Way through Breast Cancer
In December 2011, I went for my annual mammogram. That afternoon, the radiologist told me she was almost 100 percent sure I had breast cancer. The following day, her diagnosis was confirmed with a biopsy that showed a small tumor in my left breast. When I had surgery a few weeks later, I learned that I also had a small tumor in a lymph node near my armpit (“Stage 2” cancer). As a result, the oncologist recommended that I receive both chemotherapy and radiation. I had a total of two lumpectomies, five chemotherapy treatments, and thirty radiation treatments. I finished treatment at the end of August 2012, though I will continue to take hormone therapy (pills) for several years to prevent a recurrence. My prognosis is excellent: women in my particular situation survive breast cancer 97 percent of the time. It was, however, a tough year, both because of the physical ordeal of treatment and the feelings brought up by the experience.
There was a lot to discharge and think about at every stage, including how to take charge of my health care, organize resource from my Co-Counselors for discharge, organize resource from my friends and family for my other needs, and think well about my husband, daughter, and other close loves while still putting myself first much of the time. I’d like to share some of the lessons I learned, especially because many of you will eventually cope with life-threatening illnesses in your own life and/or your Co-Counselors’.
I am a white middle-class Jewish woman who turned fifty a few months before my diagnosis, and I live in Boston, Massachusetts, USA. I have had access to paid time off of work, health insurance that covered the cost of almost all my conventional medical treatment, and enough money (of my own and from friends and family) to pay for some alternative treatment. I am fortunate to live in a place with long-standing, strong RC Communities plus excellent medical care (or about as excellent as medical care can be within the current oppressive society). I am well aware that many of my victories this year would not have been possible if I were in a different situation with fewer resources.
While it is unclear whether or how distress contributes to developing cancer, it is entirely clear that it can inhibit treatment and recovery. I’ll never know whether distress contributed to my getting breast cancer, either directly or indirectly. There is conclusive evidence that certain addictions make breast cancer more likely, but I do not have any of those addictions (such as drinking alcohol or smoking). There is conclusive evidence that ample exercise prevents breast cancer, and I have not had ample exercise during most of my adult life, due to my oppression as a female, Jew, worker, wife, and mother, and because of my “individual” distresses. Paying much attention to the ways my past behavior may or may not have contributed to my cancer didn’t seem very useful, though I did need to discharge on my fear that there was a connection between the two, and where that left me feeling bad about myself.
There is some evidence that certain environmental factors increase one’s likelihood of developing breast cancer, such as exposure to pesticides in the air, chemicals in cosmetic products, or hormones in food. There is evidence that anti-Jewish oppression has led to Jewish women having a greater propensity to inherit breast cancer. This is because for much of their history, Jews were forced to live in ghettoes, marrying and reproducing within a small gene pool. Two of the identified genes that lead to breast cancer are more common among Jewish women, but testing showed I do not have either of them. (My great-grandmother died of breast cancer, and I may carry a gene that is yet to be identified.) I did find it useful to discharge on the conditions of society—the environment, anti-Jewish oppression, sexism, and so on—that may be connected to breast cancer and the increasing number of women who are developing it, particularly in countries where capitalism is most “advanced.” One in eight women in the United States develops breast cancer (one of the highest rates in the world), and Massachusetts has the second-highest rate among U.S. states.
Most importantly, I needed to discharge any distresses in my way of taking charge of my treatment, my health, and my well-being going forward. For example, before heading to the hospital for breast surgery, I discharged on early memories related to hospitals, particularly feelings of terror and powerlessness. As a result, I was able to think better during my time at the hospital. I aimed to stay alert and in partnership with the doctors, nurses, and technicians. From my diagnosis forward, to make things go well, I had to decide again and again to prioritize Co-Counseling sessions over almost everything else.
Here are some of the themes of my sessions:
• Deciding to put myself first, fight for myself, and fight against early discouragement and victimization. While my prognosis was favorable, I viewed the fight against cancer as a life-and-death struggle I intended to win. I fought hard to be treated well by all I had contact with during my treatment. To get sufficient discharge and rest, I had to put myself first most of the time. This was particularly difficult as a mother, wife, daughter, and female. I thought well about my seven-year-old daughter as she coped with the impact of my illness on her life, but I accepted that she would sometimes be in a less-than-ideal situation while I prioritized my healing.
• Discharging on my chain of memories related to cancer. For me, this included a friend dying of leukemia when I was a teenager.
• Telling the story of what happened at each appointment, and discharging directly on my physical symptoms.
• Noticing that I was not alone and was cherished. I received an outpouring of affection and help, and it was important to absorb that contradiction1 over and over again. Sometimes people said and did things that were not helpful, and I aimed to discharge enough on that that I could focus on their desire to do right by me.
• Celebrating my victories. I handled many things well, and noticing my successes helped me keep my attention in a useful place. I got to be pleased with myself along the way and continue to enjoy the many wonderful people and meaningful activities in my life.
• Facing my deepest fears, including what felt “unbearable.” I chose to look directly, over and over, at my fear of death. For example, I discharged on imagining my husband telling my daughter that I was dead. I tried to make decisions that would help me face the most difficult aspects of being a cancer patient, rather than attempt to ignore them or go numb. For example, I chose not to wear a wig when I lost nearly all my hair during chemotherapy treatment, and instead wore hats and scarves and occasionally no head covering at all. As a Jewish woman, I often discharged on how breast cancer reminded me of the Holocaust (for instance, when women arrived at the concentration camps, their heads were often shaved).
It was invaluable to have one Co-Counselor who kept track of me consistently—including “referencing” my use of RC resource, especially one-way time.
My Regional2 Reference Person, Joan Karp, whom I counsel with regularly, made a decision early on to keep track of my well-being. We didn’t Co-Counsel every day, or even every week, but she always knew the most important facts about my treatment and the key distresses I needed to discharge. During the toughest weeks of chemotherapy, she called me every day until my symptoms began to lift. She was also the person I consulted with about requesting extra counseling resource. (Because I am building a Community outside of an organized Area,3 I do not have an Area Reference Person.)
I needed to think about when to accept one-way counseling time and when to schedule two-way sessions.
I have taught RC for almost thirty years and have many close Co-Counseling relationships. With referencing from Joan, I continually assessed what made sense at each stage of my treatment: Was I in shape4 to be someone else’s counselor? Would being someone else’s counselor (a unique form of human contact) be useful in getting my attention out? Did I have the stamina and attention to set up my own sessions?
I also had to take into account the finite resources of the Communities. I tried not to exchange time based on feelings of obligation or a fear of feeling “indebted” to others. At the same time, I didn’t want my counselors to give me one-way time out of a feeling of obligation or “owing” me for time I had given them in the past. In the current state of collapsing capitalism, it is challenging to think about how to spend our “leisure” time (those few hours when we are not working or sleeping) and where to apply our resources. I wanted to help set up the circumstances in which each counselor could think about what to offer me. In some cases, it was more than they “felt like”; in other cases, less.
Most of the time, I was able to split time—at least as an uneven split. Almost always I organized my own sessions. I stayed in touch with Joan about what kind of resource made sense at each phase: from whom, how much, and so on. Around the time of my first surgery, two Co-Counselors organized one-way time for me. One evening, I gathered a small group of women to give me one-way time while I shaved my head in anticipation of losing my hair. At a later stage, a Co-Counselor organized an intensive in which I received several hours of one-way time. I continually aimed to think about what was best for me, while also taking into account the bigger picture of the Communities’ resources.
I made clear distinctions between what to ask of my Co-Counselors and what to ask of my friends and family.
I asked Co-Counselors to have sessions with me. I asked friends and family to accompany me to medical appointments, pick up my child at school, bring me and my family meals, and provide other kinds of practical assistance. Sometimes I cried with friends who were not active in RC, but I did not expect them to have the skills or attention to craft contradictions to my distress. I tried to invite friends with RC experience to my most challenging medical appointments, such as chemotherapy treatments. Occasionally, I brought Co-Counselors with me.I thought about the kind of help I needed, thought about each person, and tried to ask for help that made sense according to each person’s strengths, life circumstances, and relationship to me. A— could cook meals for my family and me the week after surgery. B— could take my daughter for fun play dates. C— could take me to acupuncture appointments when I was too ill to drive.
I thought a lot about Harvey Jackins’ adage that human beings have a greater need to love than to be loved. Asking for help required me to remember that people’s lives would be better with this opportunity to be close to me. Whenever I could tell5 that someone had made a genuine offer to help, I chose to take the attitude, “I accept.” Now that the most serious treatment is behind me, I can say with joy that my relationships with dozens of people became closer during that time.
Because I could discharge, painkillers were rarely necessary.
Throughout my treatment, doctors prescribed painkillers. After each surgery, my surgeon prescribed a narcotic called Oxycodone. During chemotherapy, my oncologist prescribed Ativan, an anti-anxiety drug or tranquilizer. During radiation, a nurse instructed me to take 2,400 milligrams of Ibuprofen, an anti-inflammatory, each day. I took medication for pain or extreme nausea a handful of times during the nine months of treatment. I took one 200-milligram Ibuprofen after the first surgery and none after the second. I was in mild pain often, moderate pain sometimes, and severe pain occasionally. Health-care providers often commented that I should take painkillers “around the clock” (regularly, throughout the day and night) to “stay ahead of the pain.” Their goal was for me to be medicated enough not to feel even a hint of pain. But without medication, even the severe pain was almost always fleeting. When I discharged directly on the pain, it subsided, or I could think of something to do to alleviate it (such as eat or sleep), or I felt different about it.
It is clear to me that U.S. society, at this time in history, is organized around keeping people numb. It was interesting to see how uncomfortable other people were with the idea that I was in pain. Health-care providers, friends, and family often tried to persuade me to use prescription or illegal drugs, overeat, or drink alcohol. When I was waiting for my first surgery, the nurse approached me with a syringe. She was about to give me an injection when I interrupted her to ask what it was. She explained that it was a local anesthetic to numb my arm before she placed an intravenous needle there. Her plan was to put a needle in my arm so that I wouldn’t feel a second needle going in! She explained that the first needle was smaller and thinner so it would hurt a bit less than the second. I told her I didn’t need the anesthetic, and she responded, “It doesn’t make sense to me either, but that’s what they tell us to do!”
My first surgery required general anesthesia. I was able to convince the surgeon to perform the second one without it, and my recovery was much quicker.
It is impossible for me to know what my experience would have been if I had routinely taken painkillers or hadn’t discharged for hours each week. What I do know is that medical professionals frequently commented on how well and quickly I recovered from surgery, chemotherapy, and radiation. For example, I continued to work throughout my treatment—not every day, but on many days. Other patients undergoing similar or identical treatment were unable to do so.
The medical care I received was improved by my ability to be a partner in my own care.
I discharged enough before and during each phase of my treatment to be able to take charge of my care in many ways. I was able to make intelligent decisions about what health-care providers to choose, even in the early weeks after my diagnosis when I was very scared. I built good relationships with health-care providers, creating the conditions for them to think well about me. I aimed to at all times be respectful and appreciative of them as workers. I took in complex information from multiple sources and made good decisions about my treatment options. Several times, I intervened when health-care professionals were about to make an error in my care. I was able to identify the distresses that had left me vulnerable to making mistakes in taking charge of my care. For example, I noticed that I didn’t like to call the doctor for extra help when I didn’t have an appointment, especially on weekends or holidays. My oppression as a female, a Jew, and a Jewish female had left me feeling like I was being a “burden” or a “hypochondriac” or a “complainer” or “hysterical.” Over time, my judgment improved about which symptoms required immediate medical attention.
My counselors, friends, and family needed to discharge to continue to think well about me.
Sometimes, I was able to be a good counselor to others on their feelings about my cancer. For example, it was often a pleasure to listen to people cry about how much they cared about me and my well-being. Other times, I was not in shape to listen or the distresses they needed to work on were not useful for me to hear. Joan led two conference-call support groups for my most frequent counselors. My regular Co-Counselor, Gladys Maged, led a conference call for a number of my friends and family, all of whom had completed a fundamentals class even if they were not currently active in RC. After each of those calls, I could see a difference in the participants’ attention for me.
I set a goal to be in better emotional and physical shape after breast cancer than I was before.
To contradict victimization, and for the sake of my long-term survival and flourishing, I decided shortly after my diagnosis that I would not only survive breast cancer but would end the experience in better emotional and physical shape than when I started. I believe I have already achieved that goal in terms of my re-emergence. Physically, I am still recovering from the long-term effects of the treatment and hormone therapy, but I am hopeful that I will succeed in that arena as well. I am already exercising more than I was prior to my diagnosis, and I am confident that upward trend will continue. Of course, I will never be glad that I got breast cancer, but all things taken into account, I believe I moved forward as a result of the experience.
Boston, Massachusetts, USA
(Present Time 171, April 2013)
1 Contradiction to the distress.
2 A Region is a subdivision of the International RC Community, usually consisting of several Areas (local RC Communities).
3 an Area is a local RC Community.
4 "In shape" means in a condition.
5 "tell" means perceive.