Becky Proctor lives in Boise, Idaho where she’s a junior high school librarian. With respect for family members, names have not been used in this article.
Mom and I were sitting hand-in-hand on her couch when the phone rang. We’d been waiting for the call.
“She’s gone,” said my brother-in-law quietly on the other end of the line. My little sister’s 25-year battle with brain cancer was over. She died in her home, on her favorite recliner, with her cat on her lap, her son holding one hand, and her husband holding the other. Just as she wanted.
In the final gentle hour of her life, she said her last “I love you” and closed her eyes. Slowly her breathing softened and her heart beat became fainter. When it stopped, her pain and suffering were over. But her legacy lives on. This is a tribute to a loving, compassionate, and courageous woman who lived and died with purpose and dignity.
My sister was 31 years old and in medical school when she was diagnosed with a Grade II Astrocytoma brain tumor. A 14-hour surgery followed by weeks of radiation therapy halted the tumor’s growth and gave new purpose to her life. She became active in several support groups and completed a Master’s degree which lead her to a new career as a Hospice Bereavement Counselor. Her wisdom, sense of humor, and loving heart helped her deal with her own sadness, fears, and depression while supporting others as only someone who has walked in their shoes could do.
Although she knew the odds of living a long life were against her, she defied those odds and focused on living a full and purposeful life. She stayed physically active, traveled, organized family gatherings and reunions with friends, and fully participated in her son’s growing-up years. She counted her blessings as she watched him graduate from college and graduate school, marry, and become a father. Spending time with her granddaughter was the highlight of her final years.
When the tumor began to grow more aggressively in 1999 she wrote an article titled “Winging It: Living in the Face of Terminal Illness” She recalled her first surgery. “I agreed to undergo the recommended treatments, but asked if surgery could be done during my break from (medical) school. Setting the timing of surgery was my way of grasping at any piece of control that I could. Most of what was happening to me after the diagnosis felt very much out of my control.”
The second phase of her illness was more devastating and although she outlived all the prognosticators (her surgeon, himself, died of cancer before she did), her health went steadily downhill as the years passed. Pain, fatigue, and seizures wreaked havoc on her body. She endured more bouts of chemotherapy and a nightmarish laser knife surgery but the tumor continued to grow. Numbness and weakened motor control made normal tasks difficult and eventually impossible. Knowledge of the progression of her illness told her that the labored breathing, failing eyesight, and massive doses of mind-numbing morphine needed to tolerate unbearable pain meant that mental cognition would soon be gone. The merciless monster in her brain was not going to let go until it had completely devoured her. While further experimental treatments may have given her more time, they offered no hope for improved quality of life. The odds of more neurological damage were high and she didn’t want to end up a human vegetable in a nursing home. It was time to take back control.
Although our mother still lives in our rural hometown, the rest of us have migrated around the west. My sister was fortunate to have lived in a state that allows terminally ill adults the legal right to end their own lives. It took her months of praying, counseling, heart-wrenching conversations with loved ones, numerous appointments with medical experts, and an exhausting battle with her primary neuro-oncologist to acquire the medication that would give her control over the end of her life. She picked a personally meaningful date and her husband took leave from work to care for her during the last months of her life.
And then, despite the pain and physical decline, she grew even more generous and compassionate with her family and friends, crying with us, comforting us, and guiding us. Her husband cooked for endless streams of guests who came to visit. She wrote letters, made videos, and got her “ducks in a row”. One afternoon two weeks before she died, she called me, her teary voice barely audible. She’d fallen when trying to get herself to the bathroom. She had to lie there until her husband got her and cleaned up the mess. It was horribly humiliating and underscored the reality of her loss of control over her life. She told me she just “wanted to take my medicine tonight.” But, true to her nature, she held off to grant the wishes of our mother who wanted to come for one more goodbye visit.
Most societal, governmental, and religious institutions support and (even require) interventional medical treatment to keep humans alive far beyond what would naturally occur, often just extending the pain and suffering of the terminally ill. Taking pills to cure whatever ails you is as American as baseball, and apple pie. But allowing a terminally ill adult the option to take pills as a treatment to end their suffering is fought on so many fronts. We treat animals more humanely than our suffering human loved ones.
To be sure, there are those who are opposed to having a legal Death with Dignity option for terminally ill adults and I support their right to their beliefs. But I believe those of us who want to explore this option owe it to ourselves and our loved ones to engage in more public discussions so that, if we battle a terminal illness like the one my sister fought, we, too, can face death with dignity, on our own terms, in our own homes, with our loved ones by our sides. It’s time.
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