[2022-11-08] Wild and precious life
Tonight, I listened in on Ovarian Cancer Canada's National Symposium, hearing inspiring, hopeful and realistic stories from four survivors of the disease.
Marilyn
Marilyn was diagnosed in 2008 at the age of 55 (I was diagnosed at 54). Like me, she has the BRCA2 gene change and, like me, she gets a mammogram and breast MRI annually because of her increased risk of breast cancer. She had a recurrence in 2012 (five tumours on her bowel were removed, along with her gallbladder and appendix) and another in 2014 (her spleen was removed). In 2016, doctors found something on her liver, but given that it's not changing, they have elected to leave it as is. As of February, she will be a 15-year survivor. One of the ways she coped with the fear of recurrence was to prepare for death. "Once that was done," she said, "I could leave that alone and go on living. I've been doing the living part for 15 years." She is trying to pack in as much of the good stuff as she can, and makes a point to keep positive things in the future to look forward to.
Helen
Helen lost her mother and aunt to ovarian cancer in the 1980s; they barely survived five years. Helen later developed the disease herself. Like me, she was diagnosed with Stage 3C high-grade serous carcinoma, after having shown no symptoms. She saw her recovery days as her days, when she could be under her afghan with a good book. (I called these my pyjama days.) Following treatment, Helen went five years with no evidence of disease. Then, in 2010, she had her first of three recurrences. Each time, she tolerated the treatment well. For the past eight years, Helen has once again had no evidence of disease. I related most to Helen's story. She said that she is naturally endowed with a positive attitude, forgetting the bad stuff in her life. She is able to compartmentalize, putting cancer in its place and not focusing on it unless she has to. If she has an upcoming medical appointment, she thinks about it only on the morning of the appointment. She used to have survivor's guilt until she realized that women in her ovarian cancer support group needed long-term survivors to maintain their own hope. She took part in trials of olaparib in 2010 (a drug that was subsequently approved in Canada and that I now take). She has been tested many times, as genetics is a rapidly changing science, and was found to have an inherited mutation in her RAD51D gene. As a result, her younger relatives have had an opportunity to be tested for the mutation and to have prophylactic surgery if they chose to.
Starla
Starla was diagnosed with a rare form of ovarian cancer in her early twenties. Similar to Helen, after her initial surgery and chemotherapy, she went five years without a recurrence. Then she experienced a severe recurrence, involving 17 tumours. "When I woke up from surgery," she said, "I was grateful that I had woken up at all." She has undergone multiple surgeries and chemotherapies in her five cancer recurrences. One of the challenges she faces is the exhaustion that comes from being expected to be positive all the time. "On the outside, I'm smiling," she commented, "but on the inside, I'm scared of recurrence." Still, she decided to live her life to the fullest, including adopting a son. "I find my hope in my son," she noted, "and wanting to give him the best life I can." She is trying to give him as many memories as possible. Starla disclosed that she is happy to talk about ovarian cancer as an advocate and to share her story to help other people, but otherwise prefers not to think about it. This resonated with me.
Trista
Trista was diagnosed with ovarian cancer at 31, just as she and her husband were about to start a family. Doctors found a cyst on her ovary, which was subsequently confirmed to be cancerous. For Trista, the hardest part of having ovarian cancer was her loss of fertility. She never envisioned not being a mother and is sad that the choice to have children was taken away from her. When she was going through treatment, she was focused on her fertility, while her friends and family were focused on her surviving cancer. Like the other survivors, Trista acknowledged that cancer changed her. She knows what's important now: her relationships, her family and the things she wants to do. "I'm not grateful to have cancer," she admitted, "but there are a lot of teachable moments."
Dr. Jennifer Turner, who facilitated the panel of survivors, had many insightful comments to offer. She remarked that she hates cancer, as it brings a lot of losses and fears. But she does see the opportunity to use cancer as a catalyst for growth, and stated that she doesn't know anyone who had cancer who wasn't changed by it. For her own part, before getting cancer, she worked too much and said yes to too many things. After cancer, she figured out what she wanted to say yes to and what she wanted to say no to. Sometimes when her husband says something to her and she doesn't respond, he'll ask whether she heard him. "I hear you," she will say, "but I'm just not engaging. That's my option."
Jennifer suggested that we live in a disease-phobic and death-phobic society. When we're in the healthy-people line and we get plucked out and put in the sick-people line, we're in shock, she stated. But through the work she does with cancer survivors, she learned that there are not, in fact, two lines. As one person diagnosed with stage 4 cancer told her, "we're all stage 4": those with a diagnosed illness are not separate from those with no known disease. Jennifer acknowledged that people with cancer still have grief and fear and sadness, but they integrate those feelings with love and joy. "That's just humanity," she said.
Her recommendation to participants was this: live your best life, learn what you need to learn, and love the people around you. She has chosen to live her own life one day at a time, savouring each wild and precious day—a nod to Mary Oliver's poem The summer day, which concludes: "Tell me, what is it you plan to do with your one wild and precious life?"
