Grief Connects Us

by Joseph D. Stern

  To be honest, this whole experience was traumatic. And I already have a history of trauma. So I’ve been seeing a counselor. I’ve gotten married since then, but my marriage has suffered. You know…. It came out of nowhere. And having that grand mal seizure I still remember; I can still see it. I relive that. It was quite traumatic because I could see what was happening but could not stop it. I had no control over it until I blacked out. I still remember the pain. I had no control over it.

  It took me a while, my recovery. I couldn’t handle noise. I couldn’t handle too much stimulation because it would evoke seizures. I’m a very active musician—loud, moving…. My church is a lively church. I would go to church and I would have to sit in the office because I couldn’t handle all the activity.

  I’m able to drive. I keep that limited, though. I didn’t drive for almost two years. It was just too much stimulation. I still consider myself in recovery.

  I still play music. I mostly play piano now. It’s better in my hands than in my feet. And I can play organ: I just use my left foot and I control my right foot with the pedal. But the grace, I don’t know what that’s called, but the grace that I used to play with—I feel like I have [lost that]. I don’t think I play as good…. Other people say they can’t hear it, but I know, because I know how it feels. I play for myself. I don’t feel good playing in church. It doesn’t feel the same.

  While much of William’s care was covered because of the Affordable Care Act, both he and I are worried about the financial impact a lack of access to healthcare would have had on him and about how this affects other patients. He claimed he had to pay $10, 000 out of pocket for his care. Without this coverage, those out-of-pocket expenses would have been far higher.

  At the time I was single and I didn’t have much savings because I was just living paycheck to paycheck. So to be honest, I don’t know what I would have done. I still have debt. Some of those bills that came I couldn’t do anything with them so they went to debt collection agencies. I don’t know if you know, but they sell your stuff and they just continue to sell it so it stays on your credit as a bad mark.

  For a while I was doing pretty good. There has been twice I had to get [my scans] delayed. One time we did a CT scan because it was cheaper than an MRI because I was paying out of pocket at the time. So, you know, it’s been kind of hit-or-miss.

  I was blessed because one of my dear friends is in insurance. So when all of this happened, I really kind of checked out, I was scared. I was just like I don’t know what was going on. But he was instrumental in getting me signed up for Obamacare. So, navigating that stuff … I didn’t really have to do it. I had people to do it for me, like, “Here, sign this.” So I was blessed in that regard.

  [I had] never dealt with the hospital. I didn’t even know you could ask for [things]. Just things that they would do for you. I didn’t know that you could get free rides and stuff like that. They give you that stuff, but if you are sick and you’re trying to focus on your life you’re not trying to read…. I was super blessed to have a team. I had people that just picked me up and just carried me through that.

  Two things that I thought about during my treatment: First, I was so afraid as a grown man and I was imagining—that’s why I started donating to St. Jude’s—What is it like for a kid to go through this? Because you know, I was terrified. So, I thought about that and then the second thing was, [What] if I didn’t have a support system? What if you’re single in a new city and you don’t really know anybody? It’s really scary.

  After our interview, William gave me permission to audit his medical bills to get a better sense of the cost of his care. His total bill was over $155,000. With adjustments, insurance paid a bit less than $80,000. The costs of his surgery and radiation treatments were the same at about $46,000 each. MRI scans were billed at approximately $3,700, while CT scans cost less than half that amount ($1,491), so he saved quite a bit going for CT scans instead of MRIs, although these are far less sensitive evaluations. His out-of-pocket expenses have amounted to about $10,000. Without the Affordable Care Act (or any insurance coverage at all), I am not sure how William would have been able to afford the costs of his care or his ongoing treatment.

  I wondered if he ever felt that race was a factor in any aspect of his care.

  No, everybody was great.[The] staff is just impeccable. So, no I didn’t feel that race was a factor at all.

  When I was treating William during the period of Victoria’s illness and death, he was aware of what I was going through, and he was always kind to me. When I told him Victoria had died, he hugged me. I remember being struck that someone who was in the midst of his own serious illness and complications found it in himself to reach out to me. I was curious about how he handled his experience of sickness and loss.

  I hold onto my faith, man. My faith has been everything. It’s got me through everything in my life, so I became a Christian at a young age. Without God I wouldn’t be here. My faith is in His word and so when I read in the Bible where it says “cast your cares upon God, he’ll care for you,” I try to do that. And somehow it feels better. It gets me through, sometimes it’s moment by moment. Sometimes it’s day by day, week by week. His word says, “If you keep your mind steady on Him, he’ll keep your peace,” so when I need peace I just think about the Lord.

  … It’s practical, the things that I believe are true. Sometimes you fail miserably, but you pick yourself back up. There’s a scripture for that too, where you may fall seven times but you get back up. So you dust yourself off and try to do better today than you did yesterday.

  Whether patients or physicians, we are all struggling with our defended approaches to living. We are learning to open up and feel sadness, feel pain, and to accept these things. In the years since I first treated William, I have struggled my way to the realization that if we open our hearts to those experiences and allow ourselves to feel gratitude, we live richer lives.

  I always considered myself a grateful person, because I’ve always said thank you and I know that nobody has to do anything for you. But when you are down and you can’t help yourself it kicks it up to a whole other level. I remember after the surgery, I had been home a week maybe, and I woke up and every day I was worried about my foot. And I remember that Friday morning when I was able to wiggle my toes, because I hadn’t been able to do that.

  And I just laid in the bed and cried man, because I felt like okay, I’m gonna be alright. Because the brain surgery is one thing and the paralysis was unexpected so I was like … “You know, Lord, forgive me, because I have never taken the time to thank you for the ability to wiggle my toes.” The gratefulness makes you see the things that you take for granted.

  I used to be really uptight because I was a music pastor and everything, so I want everything [to] be just perfect. And life isn’t perfect. And I’ve kind of chilled out. You know the argument with a friend of mine is like “Why do you care about that? It’s really not that serious in the scheme of things,” you know? So that perspective has really been prevalent and I try not to stress about anything so it’s not really that serious.

  Before, I used to feel like I lived for other people, or I just didn’t focus on my own needs. I wasn’t taking care of me. And this situation has made me kind of flip that. So it’s not that I don’t care for others, but I no longer do it at the expense of my own needs.

  I told William he seems to have adjusted to his new reality with grace and a degree of acceptance I find inspiring.

  I have no regrets, man, because I don’t want to. Dr. Vaslow, he’s like, “You know, it could come back” and I’m like, “Nah, it’s not coming back.” You know, that’s my faith. I mean, if it does, we will deal with it, but don’t be saying that, man, because I believe words have power. So we fight about that. He says that the potential is there because even though you got all the tumor out there’s stuff in there that could re-form. Which is why he wants me to keep getting scans every six months.

 
You know, there is nothing more precious than life itself. It’s not like I didn’t make any recovery. I made a lot of recovery. I’ve done very well and most people can’t even tell I had anything. It’s just that I live with me so I know it. And people who are really close to me, they can tell. I have moments. But my life is spared and it hasn’t come back so it’s a win-win.

  We are often overwhelmed with grief when a family member dies. What can we do in the face of so much loss? How do we pick up the pieces of our lives and start anew? What can we do to give back, to express our gratitude and our remembrance? The stories of Mary Magrinat, herself a breast cancer survivor, and Sally Pagliai and the healing garden they created at the Wesley Long Cancer Center in Greensboro, North Carolina, show how two people answered these questions for themselves and point a way forward through grief to renewal and a positive legacy.

  Sally is a landscape artist who believed that creating an accessible garden would heal the earth and become a place of meaning and solace for patients and staff alike. Her father, having developed cancer, was treated at Stanford University. During her visits to California, she and her father spent time wandering the magnificent hospital gardens as he received his treatments. Sally found that the connection with nature made a positive difference to both of them.

  She recalled how later, her husband Stefano needed treatment for advanced stomach cancer. He hated being cooped up in the cancer center while he received chemotherapy, which took many hours to infuse. During his lengthy treatment, weeks would go by during which Stefano had little contact with the outside world. Sally felt that the community needed a garden for patients to rest and recover. She believes that only when the earth is healthy can we heal ourselves. She sees a profound connection between patients and nature, a position increasingly supported by scientific literature.

  After Stefano died, Sally felt physically ill whenever she went near the Cancer Center. In the process of creating the garden, she discovered that her aversion has begun to dissipate. She can walk into the building, and frequently does, without any feelings of foreboding.

  Mary is married to Gus Magrinat, an oncologist whose story appears in the previous chapter. She says that having cancer herself forever changed her. After she sold her health benefits company, Mary was looking for a new challenge and a way to give back to her community. She teamed up with Sally, who had recently lost Stefano. Together, they finalized the design, raised over 1.3 million dollars, obtained the necessary permits, hired construction and landscape crews, and corralled the help of a core of volunteers. Individuals, foundations, and businesses supported the project with donations of funds, goods, and services. It became a labor of love for many people, including many cancer survivors and family members of those touched by cancer.

  At Cone Health Cancer Center at Wesley Long Hospital in Greensboro, North Carolina, entering the hospital used to involve trudging from a concrete parking garage to a similarly drab hospital entrance, walking past an abandoned building site that had become a dumping ground for construction debris. The entire property was overgrown with kudzu and other invasive vines and plants, to the extent that when Mary and Sally first toured the hospital grounds, the site was impenetrable. In fact, the first $10,000 grant they received for their project was spent to clear enough brush so they could walk the grounds to get a better sense of the land itself.

  As they toured the cancer center with hospital officials, they were told that this abandoned area could never be developed because of the regulations to which wetlands are subject. Undaunted, they asked if Cone Health would donate the nearly two-acre wedge of land for a new healing garden. Cone agreed to allow them to build the garden, but the fundraising would be up to them.

  Over the past three years, the land has been reclaimed as a natural area surrounding the Cancer Center, yet it remains a wetland. A thick green wall of towering cypress trees and arbor vitae now blocks the rumbling noise of nearby traffic. Shade trees arch over benches, and Adirondack chairs perch above Buffalo Creek next to an adjoining butterfly garden for families and young children. The garden design is based on a meandering circular pathway with bridges over boggy areas of wetland, past copses of trees, along a small creek and sleeping boulders set in a rolling landscape. Turnouts lead to private areas with seating for rest and reflection. The entire garden is wheelchair accessible.

  Sightlines are softened and nonlinear, dominated by organic forms and plantings. The garden is informal, yet carefully conceived and planted. Flower beds spring spontaneously from the earth, full of colorful patches of black-eyed Susans, pink dogwood, arrow arum, berry bushes, swamp milkweed, ferns, hollies, and fuchsia salvia. Tall mule grasses pick up the breeze, bleached to a straw color during the winter months. Songbirds have returned to the garden.

  During the day, patients and their families often visit, seeking refuge from the institutional hospital environment. Layers of textures, colors, and knolls create inviting outdoor rooms for community and private solace.

  When I asked Mary to tell me about her experience as a patient, I had no idea how raw this still felt to her. More than thirty years have passed since her initial diagnosis and treatment. No longer living under the specter of breast cancer, she has suppressed the powerful memories of her illness, yet they continue to impact her to this day. Her life has been shaped by her cancer and her treatment, and by the illnesses of her brother and of her mother, both of whom died of cancer.

  Mary and Sally shared their stories with remarkable clarity. They describe agonizing losses and the renewal that eventually followed. Reclaiming the land and creating a sanctuary for reflection has given their grief an outlet and purpose. The healing garden, with its perennial beauty, offers refuge to those who need it most. This creation has been a powerful step toward healing themselves, healing the land, and bringing us together as a community.

  MARY MAGRINAT

  I was thirty-six years old [when I was diagnosed]. Unfortunately, I lost my fertility and the ability to have more children. It was a profound loss, along with cancer. It was very difficult. I was terribly frightened. I had an eight-year old son.

  Mary had her first mammogram in November 1985 when she was thirty-five, the age at which a baseline exam was recommended. Everything was fine.

  Five months after my normal mammogram, I am in bed reading a book, and when I turned over, I thought I felt something. So I asked Gus, “Is there something?” Maybe, maybe not. But I was busy and convinced myself it was nothing. This was April. After a few weeks, I went in to see my gynecologist, who reassured me that it was probably nothing, but she wanted me to have a biopsy to make sure. Somehow, I put it off until early June, after we came back from a week at the beach.

  I remember the biopsy. I was awake, and afterward, the surgeon held up the tumor between his gloved fingers. “It’s a classic benign adenoma. I think you’re fine. We’ll send it to pathology and it won’t take long.” It looked exactly like a small, perfectly round rubber ball. He left the room and didn’t come back.

  I waited and waited. Gus wasn’t with me because he was in medical school in Chapel Hill. The assistant appeared, or perhaps she was a nurse. She told me that I needed to schedule an appointment in the office for the following Monday. I wanted the results right then but she said they had to send the tumor for a second pathologist opinion in Chapel Hill.

  So, I went home and I called Gus who asked, “Is everything okay?”

  “Well,” I answered, “they didn’t tell me anything yet, but I have a bad feeling.” On Monday, I found myself back with the surgeon at his office. He came in and stood with his back to me, shuffling papers. “You have breast cancer,” he said. Later I realized how hard it must have been for him to tell a young mother the bad news.

  I asked, “How long do I have to live?” Which is, I know now, a dumb question. He explained that they would have to do some scans … a bone scan and other tests. I wanted a definitive prognosis, but he didn’t have much information at that point. Later,
I discovered that when the Chapel Hill pathologist saw the biopsy, he connected the dots. “My God, she’s the wife of one of our medical students.”

  I ended up having my surgery in Chapel Hill because it made sense to be where Gus was in medical school. We chose a very experienced breast surgeon. I had a mastectomy. I had thirteen lymph nodes removed, and I have had problems with my arm ever since. I don’t have swelling, but I do have a partially frozen shoulder. I have worked hard on my mobility, but there are still vulnerable spots. My neck is thicker on one side to compensate. Many years later I had a neck fusion, which I think was related to the breast surgery.

  The tumor was atypical medullary, and at that time they had very little data on this condition. I came home, and Gus so wanted it to be over and settled. He wanted us to be able to go on and not to worry, and I couldn’t not worry. I made an appointment with a medical oncologist in Greensboro.

  “You have a very nasty breast cancer,” he explained. “You’re very young. If you get breast cancer when you’re sixty, you have not as many years for it to come back. You had a mammogram in November and you did not have a palpable breast lump, but in April, you found a lump and you have breast cancer. That indicates it’s aggressive, and you are ER/PR-negative, which is also not good.”

  He told me that I should undergo chemotherapy. The decision was agonizing because chemo was not standard treatment for someone like me at the time and because we were trying to have another child. I would be exposing my body to toxic chemicals. I was told that the chemo would probably poison my fertility.

  Scientists were just learning how to treat ER/PR-negative tumors and atypical medullary tumors. My surgeon at Chapel Hill told me not to worry my little head about that. “I am going to take care of you, and you’ll be just fine.” He was a likeable fatherly-type physician, but that was not what I wanted to hear.