Rita’s Cancer Story
Introduction by Estelle Disch
Rita was hoping to publish her cancer story but died before being able to do so. I found rough drafts of four chapters of her story and have written the rest of it based on entries in her journals, our notes taken during doctor visits, and my own recollections during her last recurrence. Rita lived for over 30 years with metastatic breast cancer and wanted to tell her unusual story. She and I were life partners during 29 of those years and I was with her during her last 3 recurrences. Based on some sketchy notes, she had a much more complex book in mind but she didn’t have a chance to develop it. I believe that had her last recurrence not been so consuming, she would have written more in the book draft about the economics and discriminatory nature of the health care system; her outrage at the pink campaigns and their emphasis on survivorship; the near-absence of discussion of living with metastatic breast cancer; the role of toxins in the environment; and big pharma’s role in both causing cancer via pesticides and getting rich on cancer by developing treatments for it. (Example: AstraZeneca’s pesticides and tamoxifen). Although Rita benefitted from cancer research she was perpetually critical of the toxic environment imposed on humans by big business. And she was always focused on prevention and the Precautionary Principle. Rachel Carson was her heroine. Luckily the newsletters and fact sheets published by the Women’s Community Cancer Project are representative of this perspective and Rita did a lot of the editing and writing of those documents.
Rita was willing to have me document her illness process via photographs and some of those images are posted here.
I have provided a light edit of Rita’s writing here and there, as I would have done if she were alive; she routinely asked me to take a look at whatever she was writing once it got close to publication.
I read the journals that Rita left plus our notes during doctor visits and excerpted the sections related to health. Dates embedded in the text refer to entries in those sources. The complete version of these health entries is also posted on this web site.
Names of medical professionals who treated Rita are pseudonyms.
Estelle Disch
Cambridge, MA
2016
Not Dead Yet: Living with Stage IV Breast Cancer
Rita Arditti (1934-2009) with Estelle Disch
[Comments in brackets have been inserted by Estelle]
Preface
I wrote this because I thought my story of living with metastatic breast cancer for over 30 years could be useful to other women with stage IV breast cancer. There has been no lack of books about breast cancer in the past few years. However, most of them deal with early diagnosis and treatment and end after the initial treatments end. This in spite of the fact that about 30% of women with early breast cancer will eventually develop metastatic disease. Nobody likes bad news, but I believe that the use of the term “survivors” is automatically misleading and obscures a grim reality. It invisibilizes the experiences of those living with cancer that has spread to other organs and constitutes what I call the “American Fantasy” of happy endings at all costs.
Mine is a long story. Every time I meet a new physician and tell my story, they look at me with disbelief. So you have been living with metastatic disease for almost 30 years?
1. How My Story Began [drafted in 2008]
My story began in May 1974. When looking at myself in the mirror, I noticed a dimple on my right breast. As I touched the dimple, I felt a hard spot, different from the surrounding tissue. I kept checking it for a few days, hoping that it would go away. Some days it felt smaller, other days the same. I made an appointment with my physician. When I went to see him, he could not feel anything, but I insisted and finally I took his hand and put it exactly where the lump was. He then agreed with me, there was something there. Next, I saw a surgeon who wanted me to go to the hospital and have a modified radical mastectomy if the lump was cancerous. I could not believe what he was proposing – to go into total anesthesia without knowing whether I would wake up with one or two breasts. I told him that I could not do that. There had to be some other way.
At the time I was living with my 13 year old son. I was divorced. A couple years before I had broken up an intense and complicated relationship with a boyfriend. I was lucky to have health insurance and a good network of friends in the feminist and co-counseling communities. They sometimes came with me to the medical appointments and I could discuss with them what was going on. Their support helped me immensely.
I got two second opinions on the modified radical mastectomy. One of the doctors, Dr. G, was against it, and suggested a lumpectomy—taking out the lump, studying it, and then deciding on the treatment, which could be radiation, chemotherapy, or further surgery. The other doctor had a completely different opinion. He was adamant in favor of the modified radical mastectomy and said that Dr. G was senile and that his criticisms of the standard breast cancer treatment were off the wall. He also said that I was unlucky to be caught with my problem in 1974 as it was a time of transition and uncertainty. Two years earlier no one would have challenged the mastectomy and two years from now there would be new knowledge. He made his case very forcefully and I decided to follow his advice. Time would show that Dr. G was right. The mastectomy did not “cure” me and my breast could have been spared.
I still had to pressure the surgeon into doing a two-step process and he finally agreed to do a needle biopsy, remove a little bit of tissue and see. If the biopsy showed cancer, at least I would go into the surgery knowing that I would have the breast removed. If the biopsy did not show cancer he would take the whole lump out and study it. I felt he had finally heard me. A few days after the biopsy he called me and told me over the phone that indeed it was carcinoma, and that settled the question.
The doctor wanted me to go to the hospital the following morning but I explained that my son was graduating from elementary school and I was a single parent. There was no way I was going to miss his graduation. Friends of mine came with me to the school and afterwards dropped me off at the hospital. One of my sisters came up from Argentina and provided much needed love and support.
I was in a particularly vulnerable moment. I had come to the United States in 1965 to do genetics research at Brandeis University and later at Harvard Medical School. However, my professional life had taken a sharp turn as I learned about feminism and the politics of science. I became more and more disenchanted with lab work and with the reductionist approach of the research I was doing. I wanted to integrate a more holistic perspective into my life and work and I was in a phase of transition. It was unsettling, exciting, and scary. I was starting a new position in an interdisciplinary doctoral program for adults when all this was happening. I was cautious about letting my new employers know about what I was going through because I was afraid of the repercussions it could have on my job security.
The mastectomy surgery took place uneventfully. My cancer turned out to be carcinoma of the ducts with highly differentiated cells, which was supposed to be in my favor. I saw my mutilated chest for the first time when the surgeon changed the bandages. He looked at me while I looked at the scar and said, “You did fine. It is hard.” There was another young doctor with him who followed the whole thing with cold blue eyes. I felt like a big scar.
The surgeon took out 18 lymph nodes and 6 were malignant. That meant that I needed to have radiation treatments. Nobody had warned me about that. My first night back at home I dreamt that my right breast had grown again –smaller, round, like an adolescent’s budding breast. I touched it and marveled, saying, “So, they grow again.” Then somebody said, “No, they don’t grow again.”
During this period I found co-counseling extremely helpful. I cried a lot during the sessions and they gave me the space to express feelings of resentment and envy that I was too ashamed to express in my life.
After the incision healed I started the radiation treatment. I went to MIT for the treatment. They strapped me into a chair and fixed my head against a pole by wrapping a plastic strap around it. The chair swung back and forth in front of the radiation source. There were travel posters hanging on the walls and I went back and forth from Switzerland to Amsterdam and Paris. I felt like an astronaut in a space capsule. The women technicians were kind and told us stories with happy endings. I felt real warmth from them.
A few weeks after the surgery they did a CT scan and a bone scan and things were OK. But I realized that they should have done those tests before the surgery. If the cancer had spread to distant organs the mastectomy would probably have been considered unnecessary.
2. A Cough That Would Not Go Away
After the mastectomy and the radiation were over I started the long process of learning to live with the fear that the cancer would come back. My internist was very optimistic and more than once stated that I was probably “cured.” He told me that most recurrences occurred during the first two years and since I appeared to be doing so well, not to worry.
In 1977 Rose Kushner’s book, Why me? was published and I immediately grabbed a copy. It was comforting to read about her experience with breast cancer as well as the experiences of other women but it was also scary to realize how little I knew about the topic. For instance, I realized that before doing the mastectomy they had not “staged” me; they removed the breast and only afterwards checked about cancer spread. So I started thinking, only God knew how many other things I missed.
I tried to live in my family as “normally” as possible but I alternated between periods of great fear and despair and periods where I was calm and not thinking about cancer all the time. My work with Science for the People, New Words Bookstore [that Rita co-founded in 1974] and my new teaching job at The Union Institute and University helped to keep me centered and focused on issues wider than my personal health concerns.
Before leaving my teaching job at Boston University in 1973 I had, with a colleague, designed a course in biology called “Objecting to Objectivity.” I had been teaching general biology to first year students in the Division of General Education. As in many academic institutions, the science courses at Boston University had difficulty developing and maintaining student interest. Our idea was to offer a course where students would learn some basic science but also understand the implications of scientific developments on their lives. We framed it as a Biology and Social Issues course and soon found ourselves overwhelmed with applicants.
We covered topics that included human embryology and genetics, the biological basis of human behavior, the role and politics of the scientific community, and everything in between. We presented a variety of perspectives on each topic, tried to connect the topics to ongoing social and political issues, and in general tried to stimulate critical thinking regarding science and its relationship to issues of power and inequality in society. The course was well received and it helped me think independently instead of repeating passively what I had been taught. And it prepared me intellectually and emotionally to work in the interdisciplinary program that I had just joined. The excitement of doing new (for me) thinking helped me deal with the uncertainties of my own situation. A few months after the mastectomy I had the satisfaction of seeing in the September 1974 issue of Science for the People my article “Women as Objects: Science and Sexual Politics,” a piece I had been working on intermittently for years. The article dealt with the rationalizations that much of biology has offered for the secondary status of women in society and how in so doing it played a restrictive function instead of a liberating, creative one. I was elated that I could use some of my science background to discuss issues regarding power and oppression in plain terms and it represented a step forward in bringing together my knowledge and my political beliefs. So in the midst of my anxiety and fears, the work that I was doing helped me to keep going.
Sometime in 1976 I read about the work of Dr. Gianni Bonnadonna, an Italian researcher in the National Cancer Institute in Milan, who had used chemotherapy on cancer patients with 1 or more malignant lymph nodes and found that it helped reduce recurrences. I wrote to him describing my situation and asked him if he thought I should have that treatment. I am not sure if Bonnadonna answered my letter. If he did, I did not find it in my files but I have a feeling that he wrote back a short note saying to consult with my medical team. When I mentioned this to my internist he seemed amused and reassured me that my treatment had been the best one possible. Also, there was no study on giving chemotherapy to patients like me who had already completed a treatment plan. But he said he knew the oncologists at Dana Farber who were working on the Bonnadonna regime and would check to see if there was any work done on mastectomy patients like me.
After about 3 years of checkups everything seemed OK; all the tests came back normal. But I had developed a cough that would not go away. My internist sent me to an allergist. The allergist said he wouldn’t treat me unless I got rid of my cat. I was sure he was wrong. I had had the cat for 5 years with no problem whatsoever. Then I saw a big specialist on respiratory diseases who diagnosed a bad case of bronchitis.
By January 1979 my cough was so bad that I couldn’t sleep. I had many chest X-rays that revealed nothing. Finally in February 1979 I saw yet another lung specialist who took an X-ray and saw a pleural effusion on my right lung, which is an accumulation of fluid in the sac that surrounds the lung. He withdrew some liquid from it and the test came back positive. There were cancer cells in the pleura. That meant that I had metastatic breast cancer, cancer that had spread to a distant organ. Incurable.
Friends started giving me information about alternative therapies that I had never heard about. I spoke on the phone with a couple of patients who had recovered from other incurable cancers through diet or emotional release. One of them recommended that I read Getting Well Again by Carl and Stephanie Simonton (1978). I started crying on the phone. I didn’t even know this person but I felt like I was talking to a family member, somebody close, who really cared about me.
The doctors wanted to remove my ovaries, with the hope that the cancer was ER-Positive (receptive to estrogen, thus dependent upon estrogen) in which case the oophorectomy could produce a remission. They had tested the liquid removed from the pleura for estrogen receptivity and found it negative, but on the hunch that there were not enough cells present, they recommended removal of my ovaries anyway.
At the same time that this was going on I felt a lump in my remaining breast. I had a hard time getting my physician’s attention about this since the metastasis had become the center of attention. Finally it was decided that they would remove my ovaries and do a lumpectomy. Nobody knew whether I would get a remission, and if I did, for how long. But they all stressed that it would not be a cure, only a remission.
I remember my son screaming when he heard about the lump and the removal of the ovaries. “Oh, Mom no! How can you stand it?” I felt so sad I that could not console him. I had the surgery towards the end of March. The new lump was cancer also.
A couple of weeks after the surgery the cough started to diminish and I had hot flashes. I started the Simonton book because I felt there were things there that gave me hope—that I was not a total victim and that I could do things to make myself feel better. A friend of a friend, who had cancer, called me out of the blue and said they were starting a group for women with cancer – was I interested? Immediately I said yes. I was yearning to meet other women with cancer, to compare notes, to learn from each other. Being a cancer patient, now incurable, made me feel incredibly isolated. I just wanted to be with others who “understood” without me having to “explain.”
3. Picking up the Pieces (1978-1983) [drafted in 2003]
What now? I was 44 years old and I had to put a new life together with the knowledge that my illness was incurable and life threatening. Being an inveterate reader, I turned to books for information and hope. I added to my growing list of books to read Anatomy of an Illness as Perceived by the Patient by Norman Cousins (1979); work by Bernie Siegel; and work by Lawrence LeShan. Norman Cousins’ book left a particularly strong impression on me—his exemplary relationship with his doctor and the way he took charge of his situation were amazing.
While in the hospital I read the Simonton book, looking for ways to help myself. Until reading that book I had previously never seriously considered the possible role of the mind or feelings on the development of cancer. I was shocked and surprised by the ideas presented. They opened me up to new thinking and gave me the hope that there were things I could do to improve my lot in addition to standard medical treatment. They developed a system that helped patients become active in their own treatment. They believed that there is a strong link between psychological/emotional factors and illness and that mind, emotions, and body “act as a unit and can’t be separated.” Stress had been shown to depress the immune system and it did not seem far-fetched to think that stress reduction could help restore the body’s ability to destroy cancer cells. Their idea that a combination of techniques—meditation, visualization, diet, life goals, exercise, etc. could influence the growth of cancer opened a door of hope and mobilized my stagnant energy. On my own, I started doing meditations and visualizations three times a day, and though I didn’t feel very confident about what I was doing, I found the routine helpful and calming. For fifteen minutes I could stop whatever I was doing and, sitting or lying down, I concentrated on my breathing and created mental pictures of my cancer cells being eliminated from my body via a variety of scenarios. I always felt better after doing these routines.
In June 1979 I attended a 2-day workshop in Cambridge, MA led by Stephanie and Carl Simonton. It was an opportunity to see them in person and check them out. I was in a daze. They were articulate, knowledgeable, and did not promise miracles. Their intelligent and positive attitude won me over and I felt empowered and strengthened in my commitment to use their approach to help myself. What did I have to lose? What did I like particularly? I liked the opportunity to reflect on my life experiences and look for ways that would build a stronger sense of self and increased hope.
I also found a monograph from a Conference on Spontaneous Regression of Cancer. The conference had been held at the Johns Hopkins Medical Institution, May 9 & 10, 1974. The report presented clinical documentation of spontaneous regressions, discussed possible mechanisms related to regressions, addressed host defense, and explored hypotheses, theoretical considerations, etc. This report, while extremely cautious, presented evidence that spontaneous regressions did exist. If that were the case, anything was possible. All of a sudden, the Simonton approach did not seem so outlandish.
A friend told me about macrobiotics and cancer and I read Anthony Sattilaro’s Recalled by Life (1982). I threw away all my aluminum cookware, replaced it with steel, and had a couple of consultations with a local macrobiotic teacher who was close to Michio Kushi, the major proponent of macrobiotics in the U.S. I threw away sugar, coffee, and all canned and preserved foods. I started the diet and felt a sense of peace by having my eating become more limited and focused on a few items. I found a couple of places to eat out where it was possible to have something close to a macrobiotic meal and it did not seem too high a price to pay if it would help my situation.
During the late 1970’s I was working with Pat Brennan and Steve Cavrak, 2 colleagues from Science for the People, putting together a collection of writings from the magazine Science for the People and other sources. I had for a long time felt there was a need for such a reader and the process of working on it gave me a sense of centeredness that helped greatly. Once we had a first draft of the book we started looking for a publisher. A new progressive publishing company, South End Press, had just begun in Boston and we got a contract with them. This was my first foray into book publishing and we were thrilled with how things were going. This was the kind of book I would have used in the Objecting to Objectivity course at Boston University and it gave me a sense of empowerment and great satisfaction to work on it. The book covered a wide range of topics and the pieces were chosen not just for their topics but for their clarity and readability. Science and Liberation was published in 1980. It boosted my spirits and showed me that it was possible to continue working on themes that were important to me and to give voice to them.
At the June 1979 Simonton workshop I picked up a flyer announcing counseling to cancer patients based on the Simonton practices. I was particularly interested in meeting Ann, the woman listed on the flyer who had personal experience with breast cancer. I liked her energy and thought that she could help me focus on the Simonton work and guide me so that I would not be afraid of making wrong decisions. In one of our first sessions I broke down crying and expressed the anger I felt about my situation. I was unsure about what would be her reaction and felt guilty for not being a “strong and together” person. It was a great relief when she told me she thought my anger was a healthy sign and that it would help me fight for my life. She said anger was a form of energy and it showed I had emotional resources that could be mobilized on my behalf. I was truly delighted to hear her affirming my spontaneous reaction. We went over my life history and followed, more or less, the Simonton model of identifying difficult/challenging events in my life a couple of years before the recurrence, along with the other themes the Simontons suggested to work on. I looked forward to our sessions and felt I was in good hands because of her own personal and professional experience. After a few individual sessions she said she was thinking of forming a group of women with cancer instead of doing individual therapy because she needed to free some time for herself since she was in social work school. I regretted the change but she assured me that she would occasionally still see me individually if needed.
The group was small, 3 other women, and we met weekly for a couple of hours. I was glad to meet with other women with cancer—one with inoperable breast cancer, one with lung cancer, one with leukemia. The one with leukemia made a big impression on me. She truly believed in the mind’s ability to control the cancer; in the importance of a healthy diet; and in the whole alternative approach. She had been well for the last 3 years, after almost dying. She had changed her lifestyle, abandoned a competitive career and an oppressive family, and had become a feminist and a healer.
In my visualizations I brought women friends into the picture to help me fight the cancer. The only men I brought in were Fidel Castro and Che Guevara because their struggle was also for their lives. I had just finished reading Che Guevara’s Reminiscences of the Cuban Revolutionary War (1963) and I paid attention to his strategy, how he kept his morale high, how he persisted, and how he would not accept defeat. I felt accompanied and less alone.
My spirits were boosted. The treatment seemed to be working because the cough continued to diminish. I started to do more physical exercise, three times a week. I kept up my relaxation/visualization three times a day. I even went for a massage after much soul searching and worrying. I was worried about showing my scarred body and being rejected. But the masseuse was calm and reassured me that she had seen all kinds of shapes/bodies. I felt accepted just like one more regular person.
After a few weeks of meeting with the cancer group I felt like it was not working so well for me but I continued with it anyway. The other women talked a lot and a couple of times I found myself at the end of the session with very little time for myself. But after a few months I noticed that Ann looked greyish, tired, and seemed to have back pain. She died shortly thereafter.
In early 1980 I received an announcement of a Phase II Simonton workshop in Fort Worth, Texas scheduled for April 7-11. I liked the idea of spending more time with the Simontons and deepening my understanding of the process and learning any new ideas/developments. I had never been to Texas, the cost seemed reasonable, and I decided to go. In Texas there were about 18 participants—therapists, cancer counselors, and people with cancer. We went quickly through the basics and spent a lot of time doing various exercises, asking questions, and catching up on the research of others who were also working on cancer and the mind.
I did not find the group very approachable. I was the only foreigner and my experiences with all American groups had never been too positive. But I gained a deeper understanding of the Simonton approach, particularly regarding the issue of “blaming the victim,” which made me and other cancer patients feel that the cancer was the result of a personality deficiency. I resolved this dilemma in a rather simplistic way but it worked for me. I figured that since we are one organism and all systems are connected, it was not unreasonable to think that emotional stress, hormones, and cell growth were all connected in some way and that I would work at all levels, physical and emotional, without having to enter into a polemic that would drain my energy. Blaming the victim had been bothering me for some time and I had read spirited discussions about it. Sometimes I would be pulled one way or the other. Finally I resolved it.
Among the people I met in Fort Worth was Estelle Disch, a sociologist and therapist who lived in the Boston area. We struck up a friendship. We were both feminists and shared observations about some of the group dynamics that had sexist overtones. I felt very glad that there would be somebody in Boston after the training with whom to discuss the experience we went through. We decided we would meet after our return to Massachusetts. We met, and a few months later we decided to offer a workshop for women and health in which we would present the Simonton ideas. We did so and it was a powerful experience.
What I would never have envisioned was that the relationship with Estelle would evolve into a long-term partnership, sexual and emotional, that still endures to this day and which has made my life more complete and rich in countless ways. We are life partners and because of the circumstances in which we met I never had to “tell” about my cancer history since she knew it from the beginning. It was for me a great sign of acceptance and trust that she would be willing to start a relationship with me. After 28 years I still marvel at the fact that the cancer brought so much joy into my life.
My relationship with Estelle provided me with a great deal of support and stability and I felt encouraged to continue focusing on my recovery. I stopped working at New Words bookstore so that I would have more time to take care of myself since my job was becoming more and more demanding and I was feeling stressed for time. I started running and even ran in the Bonnie Bell, a local women’s 10k road race. I kept up my co-counseling and had some excellent therapy and imagery sessions with a gifted therapist who helped me greatly. I was simply thankful to be alive.
My mother had been in poor health for a few years and when I went to Argentina in 1981 she had been diagnosed with Hodgkin’s disease. I was with her for about 3 weeks and when I came back to Cambridge I kept in touch by phone. Her condition took a sudden turn for the worse and she died in June. I was struck deeply by the loss and felt orphaned (my father had died in the 1960’s). I mourned her greatly. She never knew about my cancer and I felt I had spared her unnecessary worry and pain by not telling her about it.
By the end of 1981 I decided to change doctors. I had been feeling for a while that my primary doctor had been having some boundary issues with me and also that I wanted to work directly with an oncologist. A friend of mine, a psychiatrist, was working at a local hospital and she recommended a young oncologist named Steven whom she thought highly of and after meeting him I decided to work with him. He is still my oncologist, after 27 years.
In 1982 Estelle and I did some wonderful traveling. We went to Israel, met with feminists, and visited several of their projects including a women’s bookstore and a program against violence against women. We were especially struck by the history and beauty of Jerusalem.
4. Trouble Swallowing – 1983
In June of 1983 Estelle and I went to Latin America. The day before leaving I was having dinner in my kitchen and it was hard to swallow a piece of meat I had eaten. I had never had any problem swallowing but this happened only once so I was not really concerned about it. The following day we flew to La Paz, Bolivia, for the beginning of a trip that would eventually end in Lima, Peru, to attend an Encuentro of Latin American and Caribbean feminists. Arriving by plane in La Paz was a spectacular, magnificent experience. La Paz is set in a depression among mountains and is one of the highest cities in the world.
One evening in our hotel I was swallowing vitamins and one of them got stuck in my throat. I gasped for air. We were terrified and not sure what to do. One of our friends in the States had given us a contact with an American family living in La Paz. Estelle called them and they told us to go to the emergency room at the city hospital and that they would meet us there. We rushed to get a taxi and went to the hospital. By the time we got there the pill had started to dissolve and eventually went down. It was one of the most frightening experiences of my life. I thought I would die unable to breathe. The doctor could not do anything but give me some water and hope for the best. This was a clear sign that my swallowing was seriously impaired. For the rest of the trip I ate only small bites, always drank a lot of liquid, and worried about every single meal. In spite of this we went to Peru and did exactly the trip we had planned to do.
As soon as I got back to the States I went to see my oncologist. A barium swallow revealed a constriction in my esophagus caused by an enlarged lymph node. I was given Tamoxifen in late August and was told to eat very carefully and slowly, small bites only. I didn’t need any prodding to do so; I was terrified of suffocation.
In December I started a new raw food vegetarian diet promoted by the Hippocrates Institute, which was located in Boston. It included wheat grass juice, a variety of vegetables and fruits, sprouted seeds and nuts, and other vegetable and fruit juices. I felt it helped my energy level and I followed it carefully for 6 months. After four and a half months of Tomoxifen I stopped taking it against my doctor’s advice once I was settled into the Hippocrates diet. I resumed taking it 6 months later because I was going to Argentina and it would have been almost impossible to follow the Hippocrates diet while traveling. I did not have side effects from the drug and was on it for 17 years. There were always scares – balance problems, unexplained pains here and there—but by and large Tomoxifen worked incredibly well for me.
Much of the rest of this story has been written by Estelle based on Rita’s journal entries. Estelle’s part will be obvious when Rita is referred to in the third person.
Rita’s swallowing improved significantly after just 2 weeks on the Hippocrates diet. She never knew whether the diet itself caused the improvement, or whether the Tamoxifen finally started working, or both. It was the experience of feeling much better and watching other patients feel better that motivated her to stop the Tamoxifen for 6 months. (One patient who flew in from Israel was carried in on a stretcher and left on her own two feet.) Rita grew her own wheat grass on shallow trays under grow lights in her study. Her house was full of mice who came to try to eat the seeds before they sprouted. Luckily Rita’s gardening skills outpaced the mice and she had plenty of wheat grass for juicing.
5. Unusual Lung Sounds – 2001
In 2001 Rita began hearing an odd noise in her left lung along with wheezing. The noises were intermittent and were never heard by a doctor. I only heard the noise twice–a quiet click. Rita was savvy about her body and suspected trouble, especially since a previous recurrence had affected her right lung. In April she saw a lung specialist who performed a broncoscopy, found a growth and biopsied it. The results were consistent with breast cancer. Although hoping for something benign like a mucous plug (a cousin had had one of those), she was very relieved that what she had was a recurrence of breast cancer rather than lung cancer. Again, she geared up to deal with it: “Getting ready for the fight.” (April 8, 2001)
In April 2001 Steven prescribed Arimidex, a different hormonal treatment. The lung noises had diminished a lot following the broncoscopy and so had the wheezing. The question was whether the Arimidex would halt the growth of the tumor and keep Rita’s lung sounding more normal. That required a 3-month wait until the next CAT scan, and the waiting was nerve-racking. At first the treatment was especially stressful because spots occurred on her mastectomy scar that looked like recurrences. But the oncologist explained that there is often a “flare up” when treatment is changed and in fact the spots disappeared. But living through that process brought Rita to a new awareness:
It makes me more aware than before of how close the cancer is to resurfacing… Like I really have to take care of myself. (May 16, 2001)
Around this same time Rita developed tightness in her chest and discomfort/pain on her left side that made sleeping on that side uncomfortable. A new bed helped a lot with the pain for a while but that issue persisted for the rest of her life. Eventually she could only sleep on her right side.
Wheezing persisted as did yawning and Rita worried about both. A possible treatment of the lung growth was photodynamic therapy, a non-surgical procedure. Rita investigated that and learned that is quite complicated and decided against it. Gradually the noises quieted. By August 26th she reported “almost no noises.” In October a CAT scan was again stable and her symptoms had disappeared. The doctor’s advice was to sit tight, go to Argentina in December as planned, and repeat the CAT scan in January 2002. A brief scare in November – a lump near her mastectomy scar- turned out not to be a problem. Around this time Rita was looking for help with back pain, following a fall in the previous winter. It turned out that she had a compression fracture that could not be treated. The pain eventually eased. During the following 4 years or so she was doing so well that the oncologist put her on annual checkups. I think that both of them imagined that since Rita had had long-term success with Tamoxifen that the same would happen with Arimidex. That assumption, accompanied by infrequent checkups, was a mistake.
Between 2001 and 2004 there are almost no journal entries of any kind. In early 2006 Rita kept a journal of our 2-month trip to Argentina that winter. She says almost nothing about her health and reports going regularly to the gym. She was in very good shape.
7. The Last Recurrence – 2006-2009
Rita’s description of the start of this recurrence:
I had spent 4 great days in Eastport, Maine with Estelle and her brother Bob and his partner Sylvia and we did a lot of running around. Our Eastport trip had become an annual event before Estelle’s departure for a month in Newfoundland. I usually returned to Boston by bus. It was on the bus that I first felt a tightening in my chest. I could not take a really deep breath. I tried several times and it never felt deep enough. It was as if a tight band had suddenly been wrapped around my chest and I could not push against it to stretch it. I changed positions different times—bent forward and backward, stretched my arms, loosened my pants—no difference. I thought, I must be too tired. Too much running around. After all, I was 71 years old and though I had been doing a strong woman class at my health club for 2 years, I thought I had to accept some limitations. I was also yawning a lot. I decided I would try to sleep and finally dozed off. When I got to the terminal in Boston I was busy getting my things and trying to get home and did not pay much attention to how I was feeling. I thought walking would get my system going normally and that the tightness would surely go away. It didn’t. When I got home, climbing 3 flights of stairs to my apartment was a chore. Because I was also yawning a lot I told myself that I was probably too tired from the trip. I went to bed, thinking that a good night’s sleep would get me back to normal.
But in the back of my mind I kept asking myself, “Is this another recurrence?” I called my oncologist but he was on vacation. At a loss for what to do, I called my primary physician, a woman whom I saw for non-cancer-related problems. At that point, not wanting to believe that this was another recurrence, I was thinking that my symptoms suggested a heart problem.
Rita had a basic heart workup that showed nothing but when the doctor suggested a stress test, Rita asked instead for a CAT scan. Her hunch was correct that she had a recurrence. The scan revealed lesions in her lung, liver, and spine.
Rita’s 4th recurrence required treatment that created distressing, demoralizing, and persistent side effects. She began her first chemotherapy, a pill form called Xeloda, in August 2006 to address general cancer growth. At that time she also required localized treatment to address chest tightness and breathing difficulty caused by a tumor in her left lung. The hope was that the tumor was small enough to be treated with photodynamic therapy but that wasn’t possible because it had already penetrated the wall of the airway. A stent was required to hold the airway open once part of the tumor was removed. Because the entire tumor could not be removed, a month of radiation was recommended to kill any remaining cancer cells in the lung. Without radiation, the tumor was likely to grow and could possibly collapse the stent. The radiation was administered in October 2006.
Following the insertion of the stent, Rita coughed a lot – violently at times- and was very distressed by the cough. It reminded her of the year and a half of untreated horrible coughing during her first recurrence. The doctor who supervised the resident who inserted the stent said that the cough should diminish in two to three weeks because once the lung adjusted to the stent it would stop trying to expel it. But the cough didn’t go away and about a month later Rita started radiation, which also provoked coughing. Between the effects of those two treatments and the cancer’s presence in her lung, she was tortured by the cough for much of the rest of her life.
The radiation caused other distress as well. During radiation Rita developed pain in her left side and chest that accompanied eating, as if triggered by swallowing. The source of the pain was never diagnosed and Rita managed it with Percocet and acupuncture. Food also often triggered a coughing fit in addition to the pain. The radiation had damaged her esophagus so food didn’t move through it normally; a 5-centimeter section was permanently atrophied.
The good news in this period was that the Xeloda was slowing cancer growth. By December 2006 her tumor marker numbers were gradually coming down- a sign of likely diminished cancer activity in her case – and that gave Rita hope. The numbers on the CA 27-29 test, the one Steven paid most attention to, went from 101 in August to 81 in November to 55 in December to 47 and 48 in February and to 38 in May.) Steven said more than once that a gradual lowering of cancer activity was a good sign. A quick dramatic response, though it might create short-term optimism, suggested a fast-growing tumor that would likely rebound out of control when the treatment stopped working. Rita, in short, had a good kind of cancer– hormone-sensitive and slow-growing. And although it had gotten too far out of control to be held in check by hormonal intervention alone, at least it was still slow-growing. It was those tumor characteristics that had helped keep her alive for so long. The hope was that the tumor markers would plateau at a low level for an extended period so that Rita could be put back on hormonal intervention alone. Unfortunately that didn’t happen because the numbers never went low enough in Steven’s opinion to consider hormone treatment alone and they started going up in October 2007 (the CA 27-29 was up to 66). At that point Steven suggested the addition of a new hormonal intervention–monthly Faslodex injections. The CA 27-29 number came down to 58 in December 2007 and Steven defined Rita’s situation as stable.
But the Xeloda had its down side–hands-foot syndrome, itchy skin, and later numbness and tingling in her hands (neuropathy). The latter appeared after 17 months on Xeloda and Rita wondered whether it was caused by the drug or by tumors pressing on nerves; it turned out that hands-foot syndrome is a side effect of other chemotherapies as well. The hands-foot syndrome caused cracking and redness and soreness in Rita’s hands and feet, which was ameliorated by heavy moisturizer applied at night under socks and gloves (Bag Balm was her moisturizer of choice). She stopped playing her beloved piano due to hand pain and hardly touched it for the rest of her life. By 2009, she was even wearing gloves in the daytime.
During the first few months of dealing with the cough there were several explanations for its persistence. First, was the lung’s effort to expel the stent. Then, radiation caused radiation pneumonitis, a condition that provokes coughing that usually peaks at 6 months following the end of treatment and then gradually diminishes. Once Rita heard that (from a lung specialist, not the radiologist), she calmed down a bit, hoping the cough would ease up eventually. She had incredible patience whenever a predicted time frame, even a long one, offered hope for relief. A third possible cause was esophagitis caused by radiation. In fact, her esophageal damage seemed to provoke upper GI reflux which in itself provokes coughing. Rita had never had reflux prior to this phase of treatment and unfortunately it never went away.
By the spring of 2008 the Xeloda was not working as well as it had. The CA 27-29 test was up a bit to 69. The largest of the liver metastases had grown a bit. There were new metastases in her bones, and there was a growth at the site of the scar where the chest tube had been inserted a year and a half earlier. Cancer can grow more freely in scar tissue because there is no circulation and chemotherapy thus doesn’t reach it. A biopsy of the growth revealed cells consistent with breast cancer as Rita had suspected, and the growth was defined as a skin metastasis. All of this combined led the oncologist covering for Steven in that period to suggest a stronger chemotherapy: Gemcitabine. She also suggested leaving the rest of the tumor there as a signal, which Rita agreed to do until it grew larger and became too upsetting; she kept checking its size and eventually wanted it gone.
Spring 2008 also marked the start of a more aggressive effort to diagnose the cough. Since it emerged as a result of the lung stent and worsened during and after radiation, Rita was convinced that it was caused not by the cancer but by the treatments. An appointment with a new lung specialist in June led to both good news and bad. Her lung capacity was above normal for a woman her age, but the doctor didn’t think he could help with the cough. His hypothesis was that there was an upper GI problem provoking the cough. “Well, at least I won’t need an oxygen tank soon….Celebrate.” (June 25)
A barium swallow revealed a narrowing in the esophagus that required dilation (stretching) via endoscopy. A reflux drug prescribed at that time helped diminish the cough somewhat for a short while. The endoscopy unfortunately created its own drama. Rita spiked a fever later that evening that required an all-night trip to the emergency room (see her description on July 30), but the dilation helped to diminish the cough. For a short time, at least, she felt greatly relieved: “The improvement of the cough is just unbelievable. The quality of my life has increased 100%. “ (August 13) The cough returned, and was helped a bit by homeopathic tablets. She tried various reflux drugs but none of them really worked. Mylanta provided the best relief and she carried it with her everywhere she went. She required a second dilation in January 2009. By January 2009 she was asking, “Maybe it is not the acid that is causing the cough?” An appointment with a visiting gastroenterologist at Beth Israel Hospital reinforced that hunch. He was convinced that a newish pleural effusion at the base of her left lung was causing the cough, with acid aggravating the situation. That effusion had grown a bit by March 2009 and an attempt to drain 100cc of fluid that was pressing on her lung failed to help because the lung did not expand to fill the space. Since Rita had never had reflux before this crisis, the GI doctor offered to do a BRAVO procedure in which an acid-measuring capsule is glued inside the esophagus while the patient wears an external monitor. Rita did that in April 2009 and it affirmed that she had reflux.
Infusion chemotherapy brought on an array of side effects experienced by many cancer patients. Rita accepted these with a sense of resignation and of joining the ranks of other cancer patients who had undergone chemotherapy. Some of the effects—fatigue, neuropathy, hair thinning—were effects of the chemotherapies. Others—sleeplessness, constipation, dry mouth—were the effects of the anti-nausea drugs administered with the chemotherapies. Thankfully the anti-nausea drugs were effective and she required the minimum dose. All these effects, of course, were in addition to the treatment-induced coughing, esophageal damage, hands-foot syndrome, and chest pain that she already had. Rita received three different infusion therapies. The first two didn’t work. The third, in combination with an alternative treatment, kept her going for her final year.
In early November 2009 there was a crisis with the chemotherapy. The port inserted in her chest for administration of the chemotherapy was tender and inflamed with what looked like a pimple on it. Steven, assuming that it was an infection, said to go ahead with the treatment and treat the inflammation with warm compresses. That puzzled us because Rita had recently been taking antibiotics for a flu, so it seemed surprising that she would have an infection. His advice turned out to be exactly wrong. What was going on was extravasation, a leakage of chemotherapy directly into the tissue, which can be very dangerous. What should have happened was cancellation of the treatment, ice packs, and then replacement of the port. Rita did get the port replaced prior to the next treatment; it was inserted in a new location.
Infusion chemotherapy also brought a lot of emotional stress. When the markers went up following 4 cycles of the first chemotherapy (Gemcitabine), Steven ordered Rita to continue with it, saying that she had not had enough of it yet. She was angry, “how much is enough?” and told him she wanted a CAT scan. The scan revealed disease progression in the liver, so he changed the chemotherapy drug to Abraxane. Her own proactivity again helped her survive. And when the lump on her side was growing larger and had gotten hard, Rita knew before the test results came in that the Abraxane had also failed to help.
During this period of trying different chemotherapies she was distressed by her relationship with Steven but ended up staying in treatment with him, seeing no easy alternative. She found him uncommunicative and vague about tumor markers at times. It’s true that the marker tests are far from perfect, but in her case the CA 27-29 seemed to be quite accurate. Sometimes he relied on the markers, but if they went up, he sometimes said it didn’t necessarily mean there was a problem. She wanted a second opinion from an oncologist at another hospital and did a lot of preparation for that visit, but it didn’t happen. One challenge was that the doctor wanted the original pathology report from 35 years earlier, which was no longer available.
What about Estrogen Treatment? There has been some success treating metastatic breast cancer patients with estrogen. As counterintuitive as that might seem, it appears to extend life in many cases and Steven agreed that theoretically Rita would be a candidate for it. But he was worried about her liver. Arguing that hormonal interventions ordinarily take at least 3 months to take effect, he worried that the liver tumors would grow too large in that time. He also believed that her cancer had probably mutated into a more resistant type since there had not been liver involvement until the last recurrence. So although Rita occasionally raised the question, and in fact was on a combination of chemotherapy and hormonal intervention for part of the time (but not estrogen), he did not want to switch her to estrogen therapy. Rita sadly agreed to follow his advice.
Alternative Treatments. Rita worked with a holistic physician, a naturopath, and an acupuncturist to consider treatments that could be taken along with standard approaches. She also consulted with a nutritionist at a local cancer center to find out which supplements would be compatible with chemotherapy (she learned that antioxidants, for example, are not). She was not satisfied with the approach of the naturopath and only took his supplements for 3 weeks. The turning point came with his prescription of 90 tiny pills before bed each night. Rita could not easily swallow any pills and the neuropathy caused by chemotherapy made fine motor activity difficult; there was no way she could open 90 tiny capsules and the naturopath did not have the supplement in powder form. I could have opened them but Rita decided to give up that approach. The acupuncturist suggested Chinese herbs that the oncologist nixed, though Rita did take artemisinin as recommended by the acupuncturist. She also took a mushroom-based supplement called ImmPower, suggested by a doctor who was a friend. The nutritionist approved of both of those.
Working with her holistic physician during the last year of her life, Rita decided to take Iscador, an injectable abstract of mistletoe that has been used in Europe for decades. She got it either directly from her doctor or ordered it from Germany. We’ll never know whether that or the chemotherapy or the combination of the two helped to keep her alive an additional year. She never told her oncologist that she was taking it, assuming that he would either tell her not to or tell her that she was wasting her money. She had had previous experience with his criticism of alternative approaches but had faith in Iscador so she took it without his knowledge. Regarding his criticism of alternative approaches, about a year before she died she arranged to have a piece of the tumor on her side sent to a lab in California to test its resistance to various chemotherapies. Steven thought that was nuts. The tumor was supposedly resistant to Doxil, which was the chemotherapy she was on for the last year, and it was the only infusion chemotherapy of the three she tried that actually seemed to have helped. The naturopath admitted that they had tested the tumor at a lower dose of Doxil than would be administered for treatment, which left us simultaneously hopeful regarding the treatment and skeptical of his approach.
Bad Days and Good Days. At times during those last 3 and a half years Rita struggled to put one foot in front of the other. She was particularly low in 2008 when she learned that a beloved cousin was dying of cancer. Her family had been hit hard by cancer.
I guess a routine that would keep me going would help but with my health as is, the cough…It all seems too hard. Cuesta arriba. I am impatient, tired, and angry. Down, down, down.—How to get better? I feel despondent. Good days/Bad Days. I don’t want to be pitied. I take the Roxicet. (February 19, 2008)
She mentioned other low days as well:
Absolutely rotten day. Too much talk about cancer… Can I live this way? Is it worth it? Is it going to get better or worse? (May 29, 2008)
I am demoralized…How do I pull through all this? (September 4, 2008)
Yesterday was a horrible day. I was scared, grumpy, and resentful. (September 5, 2008)
In September 2008 Rita felt tingling in her head and worried that she had a brain metastasis. Luckily the scan was negative and the tingling went away. She felt the lump on her side getting larger and harder in mid-October 2008 and was very demoralized. The second chemotherapy had failed.
In late December 2008 Rita asked me to retire and help her die. Since she didn’t seem to be dying I did not do what she asked, promising instead that if her health took a downturn, I would do most of my work from home and spend most of my time with her. I suggested that we go to Argentina during spring break in March and she eventually agreed. We had been hoping to go for a few weeks in June but Rita faced that she might be too weak to do so in June, so she agreed to a shorter trip in March in the midst of emotional turmoil:
It is all very hard now. Not knowing if the chemo is working… Wondering if I will make it til spring at least. What to do about Iscador and the lumps it creates. Trying to maintain weight. Not to give up, curl up in bed & let myself die. Very hard all of it. Estate planning. How do I go through this? I loved seeing friends lately. All very hard and painful. My hands are useless. I remember Joan Kelly’s words, ‘Why am I still alive?’ and her neuropathy in her hands. Why did I get cancer at 39? (January 4, 2009)
I spend all my time trying to be alive or “control” my situation. What kind of life is this? Oh, if I could recover somewhat, get a reprieve, go to Argentina. (January 15, 2009)
In fact, by January 20th it appeared that the Doxil was working. The markers were coming down a bit consistently and we did go to Argentina for 10 days in March.
My life is not exciting any more. It is an uphill battle every day. Can I do this? (February 4, 2009)
Rita also had very good days. She was motivated to write her cancer story and started working on it again. She was engaged with politics and cancer activism and human rights, with movies and books, and enjoyed spending time with family and friends. She was thrilled to be a grandmother and enjoyed every minute she could spend with our granddaughter Layla. On April 23, 2008, she wrote “I am very happy.” She was particularly happy about getting old since she never expected to do so. And she enjoyed retirement (jubilación in Spanish), which she finally took at 70:
I had more time for myself, reading and writing, doing political work, but also more time to notice the subtle and not so subtle ways in which I was now ‘a little old lady’ (yes, I am short). There I was an old feminist activist in the 21st century, amid young feminists and middle aged ones too, with a terminal disease. Not exactly the most attractive picture. But what the hell, I had survived long enough with a cancer spread, so I knew that what does not kill you usually makes you stronger. Or is it that something that almost kills you makes you stronger? Whatever. (Nietsche?) … Oh, well, death and aging are not optional. If you are lucky, you will have to deal with aging, and as for death, that is not optional either. (April 23, 2008)
Later Rita greatly enjoyed reading Anticancer: A New Way of Life by David Serban-Schreiber and reviewed it for a local health food store’s monthly newsletter. In October 2008 an op-ed she wrote about cancer and the environment was published in The Boston Globe, which made her very happy. She got a lot of positive feedback about it.
Rita was invited to give a talk at the May 2009 Metastatic Breast Cancer Network conference and she was very pleased to have been invited to do so. At one point the emcee asked all people with breast cancer to stand. Then she asked people to keep standing if their diagnosis had occurred more than x years ago, starting with 1 year, 2 years, etc. When they got to 15 years there were just a couple of people standing and when they went beyond that, there was Rita standing alone, at 30 years metastatic, with the whole room clapping and cheering.
Rita continued to be active with the Women’s Community Cancer Project and attended events to distribute newsletters and fact sheets. And she gave an occasional talk about the politics of cancer, especially regarding cancer and the environment, one as late as October 2009. In mid-November 2009 she said in her journal, “Ideas for a really short book are perking up.” By then she knew that she would not be able to write a long book about her cancer story and was considering a short one. Three weeks before she died, she gave a talk about the Grandmothers of Plaza de Mayo at a local university. She enjoyed that a lot and was happy that she could do it. Even when weakening fast a few days prior to her death, she held out hope that we’d be able to make our planned trip to Costa Rica a few weeks later.
The End. Rita was losing the ability of get enough oxygen to function, but suspected heart damage from the chemotherapy as the cause. She fell a couple of times in her house for no apparent reason a few days before she died. On December 24th, she had a nice talk with her sister Edith in Argentina and felt very good about that. We went to a Christmas Eve gathering with folks we’d been doing that with for about 15 years. Rita’s legs collapsed during the party but she wanted to stay. She needed to be carried to the car at the end of the gathering but refused to go to the hospital. I figured that if we couldn’t get up the stairs at her house then we’d go to the hospital. As we arrived at her house, one of the men in her building appeared at that exact moment and offered to carry her up the stairs. She slept well until about 5am, said she felt like she was dying, said she didn’t want to be resuscitated, and agreed to go to the hospital since walking was very difficult. We waited a couple of hours so as not to disturb a doctor too early, called the oncologist on call who happened to be Steven, and got to the hospital around 9am. She agreed to let them drain fluid from her lung since the doctors assumed that she had pneumonia. The interventional radiologist doing that procedure asked her a few informed consent questions and then she asked one of hers: “How long will the tube be in?” He answered, “I don’t know.” A quick look of shock passed Rita’s face. She had zero interest in living plugged to a wall and she died shortly after that procedure. They called a Code Blue, ignoring her request to two different doctors that day not to resuscitate her. Luckily her son Federico and I were nearby and were able to intervene and demand that they leave her alone. In spite of that final drama, I think she was already gone and had a relatively peaceful death. The radiologist said that although she was under only conscious sedation rather than full anesthesia she was feeling no pain as he sliced her skin and pried her ribs apart in order to insert the drainage tube. I suspect that she was already in a coma and was drifting away. Shortly before that procedure Rita smiled at Federico and me and said, “The two people I love most in my life.” It was, effectively, a sweet goodbye.
Looking Back on Rita’s Experience
My brother Bob recently asked me if Rita thought the treatment itself was worth it, given the stress it caused. Rita didn’t frame her experience in exactly those terms, though she certainly asked questions related to whether life was worth living in the face of so much suffering. But she wanted to live and accepted her doctors’ recommendations regarding treatment. She was savvy enough to know that chemotherapy and other interventions had difficult side effects. She faced those without much complaining, though her distress is obvious in her journals. (Rita did not like complainers and practiced what she preached.) She was, however, annoyed when doctors downplayed the side effects that she might experience. For example, no one warned her that the stent insertion was likely to provoke a cough, and the doctor’s prediction that the cough would stop in two-to-three weeks was totally wrong. The radiologist did not discuss coughing as a major effect of radiation, though that was what distressed Rita the most. When she reviewed the informed consent form, chronic cough was one of the possible side effects, but the doctor had not discussed that when we met with him to talk about side effects. He talked instead about trouble swallowing, dryness, heartburn, and fatigue. He added that the Xeloda probably made the esophagus more sensitive to radiation so Rita should take small bites and eat soft foods. He did not mention permanent esophagus damage and the reflux it might provoke for the rest of her life.
Rita’s biggest regret and resentment was that she was not on 6-month recall while on Arimidex and had not had a CAT scan between 2004 and 2006. An oncologist covering for Steven at the start of the last recurrence said that Arimidex would likely work for a shorter time than Tamoxifen did since the cells are smarter as time goes on. By the time the last recurrence was discovered her liver lesion had become too large to ablate and the lung tumor was too large to treat with photodynamic therapy. Rita believed that if these issues had been diagnosed earlier and treated locally, she would have had a much easier time and very possibly a longer life. There would not have been a stent-provoked cough or esophageal damage from radiation. And there would not have been a lung collapse and a scar where the drainage tube was inserted (the site of the skin recurrence). She knew that at some point the cancer would stop reacting to the treatment but had it not gotten so out of control, other hormonal interventions might have worked to hold it in check longer. And she might have died of something else and thus become, by her definition, a cancer survivor. Of course if the cancer had eventually grown in her pleura in spite of more rigorous tracking, that would have eventually caused coughing. But I agree with her that the cough would very likely have been delayed.
I personally wonder whether part of her communication problem with Steven related to his failure to keep her on 6-month recall with more regular CAT scans. I suspect that he felt badly about that but he never said so, so I don’t know whether that was the case. He was also facing his own cancer crisis during the time Rita was ill and he seemed to be off his game. The day after Rita died he called me to say that he was “shocked.” He had predicted that she had pneumonia and would be home in a few days once her lung was drained. He did not express condolences, did not say anything about their 25-year relationship, and did not attend her memorial. I found his reaction disappointing. I ordered her records and she did not have pneumonia. The cancer itself had grown out of control.
Lessons
If I were to face the kind of illness that Rita had to endure, I hope I would do a few things differently. I hope I’d ask more questions about all possible treatments and their side effects and try to weigh all the alternatives before taking my doctors’ recommendations. I hope I’d pursue second opinions and switch doctors if things were not feeling right. I’ll always wonder, now that I have revisited this story with the benefit of hindsight, whether photodynamic therapy in 2001 would have helped Rita avoid the stent and the radiation in 2006.
Summary of Alternative Treatments
Acupuncture
Iscador injections
Artemisinin supplement
Reiki group
Cancer Support group with Ann
Cancer Support Group at a Hospital
Simonton Trainings I and II
Hippocrates Institute 2 week program
ImmPower (mushroom-based) supplement
Macrobiotic diet for several years at least
Vegetarianism for much of the time
Lots of fresh juices
Stainless steel cookware
Meditation and visualization
Exercise