From volunteer to patient: Marjorie's story

[5 MIN Read]

Contributing author: Marjorie Hillson

Two and a half years ago, when I began volunteering in the Cancer Education Center at Swedish First Hill, I identified as a cancer survivor. In November 2019, I switched roles, ending my volunteer assignment and becoming a patient enrolled in a drug trial managed by Dr. Philip Gold at Swedish First Hill.

In 1991, I’d had a lumpectomy and radiation to treat an early stage breast cancer. In 2007, my annual mammogram led to a diagnosis of lobular cancer in both breasts. I had bi-lateral mastectomy, and a kind of chemo that made me lose sleep and interest in food but didn’t cause me to lose my hair (more on that later).

My other big reason for volunteering to work with cancer patients was that my immediate family had been a breeding ground for various types of the disease. My mother had lung cancer. My older brother survived prostate cancer and lung cancer, and my youngest brother, who’d had testicular cancer, died from colon cancer in 2009. My middle brother has thankfully been spared the disease to-date.

Given all this, I was always aware that having had one kind of cancer makes you more vulnerable to others, and whenever I had a medical issue—nothing serious for many years—I was a bit anxious. All the same, I was as stunned as anyone is when I recently received a new cancer diagnosis.

In September 2019, I scheduled a physical with my primary care physician. I had 40 minutes to talk with her, and together we came up with a comprehensive list of my medical concerns, including some random, intermittent stomach pain that was second on my list after: “Get better sleep!”

Later, this astute doctor said that the way I spoke about the stomach pain alerted her to the fact that it was a change for me. She ordered labs that were not routine, but both she and I were gobsmacked when these tests came back with clearly abnormal results. There followed a series of consults with different docs, scans, procedures, and more tests. Finally, in October I received a definitive diagnosis of stage IV gall bladder (or biliary tract) cancer. The news was devastating, of course. Early on a doctor (not an oncologist) told me on the phone that I had only a short time to live.

Meanwhile, my older brother, a retired research scientist with some medical training, began looking for relevant drug trials, as did my nephew-in-law, who is a doctor and an epidemiologist. These two members of my extended family don’t know each other, live on different coasts, and are 35 years apart in age, but both homed in on a trial that Swedish First Hill was participating in.

After my husband and I jumped through several medical coverage hoops, Dr. Philip Gold accepted me for the trial, and I was fortunately “randomized” into the group receiving both the traditional chemo drugs for my cancer, and a third “study” drug.

Having transitioned from volunteer to patient, I couldn’t be more grateful for my past experience, which introduced me to many patients facing advanced cancer with grace, humor and resilience. Because of them I was familiar with the chemo units, and I’d met people who had long outlived their initial prognoses, so I felt like it was reasonable to hold out hope.

I also met patients and family members who were isolated in their personal lives and unfamiliar with how medical systems work. In my case, my husband has taken on a lot of challenges on my behalf, and as I’ve already mentioned, so have other family members. Volunteering familiarized me with the many support resources here at Swedish and in the community. Seeing the difference in my situation and some patients’ circumstances magnifies the importance of the roles played by social workers and other staff, including those in the CEC, who often are resource connectors for patients that otherwise might not know where to turn, or how to interpret the new vocabulary that enters your life when you’re diagnosed with cancer.

One of my favorite things as a volunteer was fitting women with wigs. American Cancer Society receives new wigs from manufacturers and supplies them to the education center. For some women, wig fittings were a disturbing, even tearful, part of the process of confronting their disease, as hair loss was such a visible illustration that life had changed. Others accepted the change with humor, trying on a series of wholly unsuitable styles, crazy curly, silver with purple highlights, grandma’s perm, and laughing throughout. Sometimes they texted pics to family members, who responded with equal humor. Then they’d put on the one wig from our supply that absolutely suited them and study their own reflected images with sighs of satisfaction.

A few weeks ago, Senji Lama, one of the wonderful staff people in the CEC, came up to the fourth floor at Swedish First Hill, and fitted me with a wig. I still had hair, but it was coming out in handfuls and clumps when I ran my hand over it, and stray hair was appearing everywhere in our house, so I was ready to get rid of what was left. As so often happened when I worked with patients, I tried on wigs that didn’t work—my husband labeled one of them “Justin Bieber”—but there was one that suited me. It’s not like my exceptionally thick, curly hair at all, but it’s the right color, and it has bangs that won’t simultaneously expand and retract at the slightest hint of humidity, as my real hair annoyingly did.

My son and my husband came with me to my hairdresser for moral support when I got my head shaved, and my wig trimmed. My hair has been long, short and in-between and has had plenty of bad days, but I’d been loving the way it was recently. Still, I shed it without tears. Nyesha, my kind hairdresser, left me with a little skull cap of salt and pepper hair and I felt oddly liberated. Now I wear the wig on occasion, but also rely on berets, chemo beanies, and at home, or among close friends, I go bare headed, amping up the eye make-up and earrings.

I remember all the things I said to women during wig fittings, without really understanding, about how hair loss could be a difficult experience, and all the things I learned about them during that relatively intimate experience. They talked about their illnesses, their emotions, their families, their professions, their fears, somehow freed under cover of the activity we were engaged in. I realize now that because of having shared some small part of their lives, I am free to handle my own loss in my own way.

The same applies to other things I often said when working with patients. One common phrase was “You’re living the life you have now,” with the emphasis on continuing to live, even with the alterations mandated by illness and treatment. In my own life, I recently lost a good friend to colon cancer. Patty was a model of living the time she had—during the last year plus of her life she took her only trip to Europe, rented a beach front house because she always wanted to live on the water, saw Hamilton on Broadway, visited family in other parts of the U.S. and threw herself a dance-crazy 65th disco party, among many things. She made a plan for her final days, and they went just as she had intended. When she found out about my diagnosis, she said her best advice was to do at least one thing you truly enjoy every day.

Now, I keep the patients I met—sometimes once, sometimes repeatedly—and my friend Patty in mind as I live through the rough days and the good ones. Just yesterday, I got very good news about the results of my first post-chemo scan. I have incredible support from family, friends, and the staff here at Swedish.

I have hope, and I have the many examples of courage, humor, strength and grace, that I encountered in my volunteer work. I know that a time may come when I stop making progress and I’ll have to think about things differently. Like Patty and so many patients at Swedish, I’ll do my best to face whatever future I have with purpose and with gratitude for the adventure and the love that has been part of my life, along with the challenges that for all of us are part of being human.