“Well,” I said, “I am worried and I have questions.”
I read everything I could about breast cancer and called the National Cancer Institute and tried to talk to the director, Dr. Bernie Fisher, but I never got through. My parents wanted me to take chemo. They were remembering my brother’s cancer and how he was saved by chemotherapy.
The oncologist in Greensboro ordered more tests on the tumor, and I remember the way I felt when I read the results. The words sent shivers of fear through my body. I had at least a 25 percent chance of recurrence, but probably more like a 40 percent chance. At that time, the average length of life if the cancer recurred was two years. I had an eight-year-old son, Tommy, and I was terrified.
I flew to Miami for a consult with a leading breast cancer researcher. I brought all my medical history and scans with me and was incredibly anxious to get advice about whether to take chemo or not. Instead he just wanted to endlessly talk about enrolling me in a randomized study. I went all that way to come to a decision. I was there about my survival and my fertility. I was furious and crying and honestly didn’t know what to do.
“Just take it out of your mind. I’m not joining your study. Period,” I told him. Instead, I asked, “What would you do if I were your mother or your sister?
Finally he said, “Take the chemotherapy.”
Ultimately, I chose chemo because of the fear of recurrence. I’ll never know whether I could have made it without the chemo. I could be here with four kids or I could be dead, but I made the best decision I could.
I took 5FU, Cytoxan, and what the nurses called the Red Devil (Adriamycin). My oncologist decided to do it quickly and intensively to try to mitigate the destructive side effects on my fertility. I took it every week for three months. I ended up skipping a couple of treatments due to very low white cell counts, and it was really rough. Those were terrible months. I was deeply depressed. Each time I took chemo, I felt like I was poisoning my fertility.
Gus came home from medical school in Chapel Hill every single night to be with me and to take care of our son. I continued to work all week—mostly ineffectually—and late Friday afternoons, Gus and I would take a walk to try to decompress me before treatment. When I walked through the sliding glass doors into the hospital, it was terrible. I had anticipatory nausea and all that stuff that cancer patients experience. Eventually they gave me that drug that helps you disconnect from reality. It didn’t solve everything and I was still aware of what was going on, but it helped a lot. They still prescribe it today. Ativan.
And then the chemo was finally over. I was 104 pounds at five feet eight with no hair on my body, and I did not recognize myself in the mirror. I looked like a dying person and I felt like a dying person, but it was the poison and so when the chemo stopped, I started to recover. It was like spring with tiny sprouts of hair on my head and my appetite coming back and a little pink in my cheeks. I remember running into someone who said with shock, “You’re back.” They had certainly thought that I was a goner.
There was a woman right down the street, half a block away, whose child was in Tommy’s class at school. She had breast cancer at around the same time as I did. She had such a great attitude all the way to the end, and she was a role model for me. I remember her out in her yard in her swimsuit with her dog about 2 weeks before she died.
Although I came back physically after the chemo, I was haunted by fear of recurrence. I obsessed about it. I also struggled to endure the intense hot flashes of early menopause brought on by the chemo. About two years out, I couldn’t stand it anymore. I made an appointment with a therapist because the worry about the breast cancer was driving me crazy. After a few listening sessions, the therapist said, “Okay, you are now as of this moment out of the breast cancer business.” Somehow that phrase became my mantra and it helped a lot. Done. Finished. I never forgot what I had experienced, but I was no longer consumed by it.
I wanted to know how having breast cancer had changed Mary.
People often say that getting diagnosed changed their lives for the better—they appreciate everything so much more. There was definitely some of that, but mostly this was a very painful episode thrown into the middle of my life. It was an experience I would much rather have not had. Later I have thought that it was like being stabbed and mortally wounded. Eventually I was able to move on but I never forgot being attacked so violently.
I don’t think having breast cancer changed my personality, but of course it changed my life drastically. I would have had a different life with more children.
I learned what it means to be sick and vulnerable and afraid. I tasted some of what it feels like to be dying. This was a gift in a way because it has given me a connection to people who are sick. It helped me when my mother was dying. It has helped me with many friends as they have experienced illness and loss. It has also helped me understand my husband’s work [Gus is an oncologist].
I learned just what a lifeline it is to have people reach out when you are sick. Because of the nurses and the doctors and the friends and family who reached out to me while I was sick, I have wanted to give back … and have been immensely enriched by the experience of giving back.
I think that my life would have been more innocent.
I asked if she had been pleased with her care and if she thought anything could have been done better.
I feel that I had excellent care. I had the opportunity to carefully consider all my options with lots of input from many sources. Looking back, I would not change any of the decisions that I made.
I am very grateful that we have an outstanding medical community here in Greensboro because I was working full-time and had a young child and my husband was commuting to medical school. It was immensely less stressful to be treated here. I thought the care in Greensboro was excellent and much more personal.
I started getting mad a lot. Later I realized that my anger was really at the cancer. I hated going to the clinic to be poked and prodded looking for a recurrence. In the old days I was always told that I was so healthy. When I had a cath inserted in my chest before chemo began, I remember the surgeon saying, “Let’s put it where it will be easy for the nurses to get to.” The big fat ugly scar showed with most of my clothes—to this day I hate that scar. That scar is a constant reminder to me and an announcement to others about my breast cancer. One good thing came out of this scar: Gus now tells everyone about the option of placing the port where it is not visible.
Gus listened to me, and as a result, I think he has a better understanding about what his patients are going through. He knows about this in a way that a lot of other doctors don’t. Maybe it made Gus more compassionate as an oncologist to have had a wife who went through breast cancer at age thirty-six.
Gus also understands what the husbands are going through. He feels privileged to be with his patients and their spouses during this crucial time of their lives. From the moment I first met him, he has always talked and thought about death a lot. He doesn’t see it as something foreign or depressing. He sees it as part of life. That was helpful to me.
I remember when Gus promised to tell our son all about me if I died and to show him pictures of me. This initially seemed callous to me, but then in a deeper way, I understood that he recognized out loud where things stood. He also understood completely when I decided to go to the priest and have last rites because I really felt that I was dying. In retrospect I realize that I was grieving, not just about the cancer, but perhaps even more about the loss of the possibility of more children.
I asked if she had been private about her cancer and discussed her illness only with Gus and her family or if she had been more public about it.
I talked about my cancer nonstop with Gus and my family for the first two years but not so much with the rest of the world. Gus was totally patient, but it was very, very consuming for him and for me. I don’t think that was unusual.
I also talked a lot to my sister and to my brother and to a close frie
nd. I joined a small support group, which fell apart before even getting off the ground.
At the time there weren’t many support groups and most people didn’t talk about cancer. I remember going to a professional lunch wearing a wig—in those days the wigs were awful—and feeling so self-conscious. I was terribly thin, no eyebrows, no eyelashes, my awful wig, and for the most part, nobody said anything. One person asked, “How are you?” and then almost backed away. “I’m kind of terrible, but I’m, you know …”
Many people wouldn’t look me in the eye. I was young and sick and had a child. Gus was always fine addressing my illness, but many people couldn’t face it. When I was first diagnosed, my parents were unable to talk about it. My sister just cried. I reminded her: “I’m not dead yet. Don’t cry yet.”
One thing that used to drive me crazy was people suggesting this or that reason for my having cancer, like stress or negativity. People wanted a reason for my cancer. They implied maybe my attitude was partly to blame. Strangers would share stories about so-and-so who survived because they had such a good attitude. They would tell me that so-and-so was sick because they were under so much stress. Was I under a lot of stress? Maybe I was. I told myself I had zillions of healthy cells and a few very bad ones. People would counsel me about stress, diet, positivity, and while I knew they were trying to be nice, I didn’t find that helpful.
Many years later after Mary sold her business, she decided that instead of retiring, she would try “rewiring.” Around that time, a friend introduced the Mary to Sally, a landscape architect who had recently lost her husband to cancer.
Sally told me about how, as she stood in the treatment rooms at the Cancer Center with Stefano, her husband, she had longed for a green place to walk. I told her about how nature soothed me during my time dealing with cancer, about how the trees and the sky would bring me down to earth to a calmness and peace that I craved in the midst of my anxiety. We shared stories, and then she brought up the idea of a healing garden and I was immediately on board.
Our initial thought was to design a little garden out behind the Cancer Center. We both passionately believe that nature promotes healing, and we both wanted to give back.
A few weeks later we met at the back of the hospital and picked out a small lovely spot, but then we noticed a huge empty expanse. We found out that was where the Cancer Center wanted to build a parking garage, but the land was unsuitable for building and it was also a protected wetland. There was no chance of ever building on that site. At that moment our eyes lit up and we saw the opportunity to build a big healing garden. It ended up being nearly two acres.
Gus quietly gets things done. One of his patients’ daughters wished to contribute to the cancer center. Gus pointed out his office window at the empty expanse, and they decided to help us explore the idea of a healing garden with a donation of $10,000 to the project. This allowed us to hire an arborist and a crew to do some initial cleanup of the trees and the site so we could see what we were up against. The land seemed impenetrable, a jungle full of poison ivy and choked with invasive plants, but when the stream and the contours of the land were uncovered, we began to see its potential. Sally started sketching, and I began to plan.
The Cancer Center and Wesley Long Hospital agreed to form an exploratory committee, and we met regularly with them. We also met with construction companies and vendors and government officials about permits and wetland rules. It became apparent that this would expand into a huge project, and we were eager to take it on. The committee immediately understood the value for patients and families and staff and gave us tremendous support and encouragement. Our goal was to transform two unused acres into a healing garden, and to raise all the money to build it.
Initially we proposed a budget and promised to stay within the budget. Then we told the committee that we preferred to design the most wonderful garden possible. We wanted to use all the land in the most beautiful and useful way and then we would figure out what it would cost. We would raise money and build as much of the plan as the donations would fund. It is still a miracle to me that in the end we built everything that we had imagined because the Cancer Center and the community supported us all the way.
SALLY PAGLIAI
Sally Pagliai lost her husband Stefano to stomach cancer when he was forty-five. She is a landscape architect and, as part of the long-term recovery from her loss, she teamed up with Mary Magrinat to create the Healing Gardens at the Cone Health Cancer Center where Stefano was treated. I asked Sally to tell me about Stefano’s illness.
Stefano began to complain of stomach problems. We attributed the problems to the fact that he was traveling abroad so much for work. One day, he announced: “Something is wrong.” When he went to the doctor, he was diagnosed with metastatic cancer in his liver. His doctors discovered that the source of it was a tumor the size of a pancake on his stomach. He may have been living with that tumor for years.
The news was dire from the onset. The doctors said they might be able to slow it down or arrest the growth for a while or shrink some of the tumor, but they couldn’t cure it.
Stefano felt awful and had no energy while he was taking chemo. Once a week he would go into the hospital in the morning and leave completely depleted at the end of the day of treatments. We lived close by so I would run home to manage things and then go right back to Stefano. It was really hard on him. After six months of treatment, we got the good news that the tumors had stabilized. After that first long round, they gave him a little break.
I refused to breathe any life into it. “You are not dying,” I insisted. Stefano would answer, “Okay, I am not.” During those long months of chemotherapy I thought that if I breathed any air into the idea of his dying, then it would be more likely to happen. Some people beat the odds, and I believed that Stefano was going to be that person. I needed to be the cheerleader not only for Stefano but for our kids, so that is what I did. “Honey, you are going to beat this thing. You are going to live.” Stefano would answer, “Okay, I am.”
Sally’s dismissal of the possibility of death, her refusal to “breathe any life into it,” was similar to Victoria’s. Sally was determined to reject the idea that her husband was dying, despite clear evidence to the contrary.
Stefano was very close to Patrick, a Buddhist monk, who practices healing that is a form of acupressure/acupuncture. Stefano found comfort and peace through Patrick’s treatments. Later I found out that they also had discussions about spirituality, about the power of love, and about what happens to energy after death. These discussions were very important to Stefano.
Despite all the treatments that he had endured, Stefano’s cancer came back with a vengeance. Dr. Sherrill started Stefano on chemo again but had to stop it because Stefano was so weak. Stefano and I never faced a big decision to stop treatment because Stefano just could not handle chemo anymore. It ate him up. At this point we brought Stefano home and we involved hospice.
Shortly after this, Stefano’s best friend, Billy, from Minnesota and Patrick moved into our home for the last three weeks of Stefano’s life to help us take care of him along with the hospice nurses. Taking care of someone as ill as Stefano was tremendously difficult and agonizing work. Our daughter, Bianca, was nineteen and our son, Gianmarco, was fourteen, and the three of us would not have been able to care for Stefano at home without the devotion of friends and the hospice nurses. In the last few weeks Stefano had to receive nutrition through tube feedings and he experienced a lot of pain that we had a very hard time managing. Eventually he stopped being able to talk; he would wince and shudder. He slipped into a coma for about three days before he finally died.
Stefano and I did not talk about dying, and finally he was so sick that we could not talk because he didn’t have the energy. Looking back, I regret that because there were so many things that we did not work out together. I don’t know if you can be prepared or help your children be prepared when a loved one dies, but Stefano’s death came as a very unexp
ected hard blow to all of us. Looking back, I wish that we had been more open with each other about our fears and about the seriousness of his condition. When he died, I didn’t even know what he wanted me to do with his remains.
I wondered how Stefano felt at the time.
Stefano was angry and felt cheated. He had a full and rich life after a difficult childhood. He wanted to continue his exciting career, see his children grow up, be my sweetheart. He wanted to live. He was just forty-five when he died. It just did not make any sense.
If you are lucky enough to go through life with a person you love, you build all these layers that are woven together like a fabric. When Stefano died, it felt as if this fabric was violently ripped. My edges just kept fraying. I kept falling apart because this thing that was holding my life together had been ripped and torn away from me. It took a long time for the children and me to reach some sense of healing, and there will always be a big hole in our hearts.
While Stefano was being treated at Cone Health Cancer Center, I often spent the day with him while he received his chemotherapy. There were times when I desperately wanted to take Stefano outdoors, in nature, but there was no place like that near the hospital. My father, who also died of cancer, was treated at Stanford in Palo Alto, and I remember how comforting it was to walk in the beautiful gardens surrounding the medical center. One of the staff members of the Cancer Center, C.L. Hickerson, stayed in touch after Stefano died and asked if I would be willing to design a healing garden for the Cancer Center. I was interested, but there was impending construction at the hospital in the way, and I also could not yet face returning to the Cancer Center.
A few years later as my life began to piece itself back together, I fell in love with Kyle Jackson whose support and kindness enabled me to move forward. With Kyle, I felt a renewed joy for life and excitement about my career. It was through Kyle that I met Mary Magrinat, with whom I had an immediate rapport. I told Mary about the idea of a healing garden at the Cancer Center, and she was immediately on board. Soon after, Mary and I were walking the grounds next to the Cancer Center, brainstorming. We stood where the Wetland Garden is now and realized, “This is where these gardens need to be.” Mary and I shared the vision of a garden that would be a refuge where patients, families, and staff could experience nature.
Grief Connects Us Page 20