“Stage 4 peritoneal carcinomatosis of unidentified origin.”
The air in my dining room suddenly felt stagnant and murky. My wife, my mom and I sat at our dining-room table in a Zoom meeting room, staring at the doctor who was delivering the worst news possible from a tiny square on my laptop. Before I could utter a sound, she confirmed my fear: “It’s extremely late stage, I’m very sorry.” I shoved my chair away and ran sobbing up the stairs. I could not even console my mom.
I just wanted to go back in time and change the inevitable ending, as if it was all just a horrific story I was reading. I grew up in the 1980s, raised on the “Choose Your Own Adventure” book series, where I could control the ending by changing the trajectory at the end of each chapter. I was fascinated by the idea that a tiny, seemingly incidental action could change the course of the story, and ultimately the outcome.
On that day in May 2020, my mom became the protagonist in her own adventure story. She was diagnosed with late-stage ovarian cancer. She was only 68 and had many adventures ahead of her. We made a pact that day to guarantee one thing within the unpredictable plot ― the ending to her own story.
Following her devastating diagnosis, she emphatically chose life. “Meggie, I’m ready,” she told me. “We got this! I am not going anywhere.” Choosing to fight for your life is not an adventure for the faint of heart, and my mom was a spirited warrior.
The first year of our journey did not lack excitement. There was darkness, pain, countless hospitals visits, and even unexpected joy. Mom ended her first round of chemo after six months with her spirit intact, and with the belief she slayed her cancer dragons. She slowly recovered from the wreckage of chemo, her previously perfectly colored hair began to grow back as shiny and reflective as armor, and we began to acclimate to a slightly less intense adventure.
We thought we finally had the storybook ending that kept us hopeful during the roller coaster ride known as cancer treatment.
Fast-forward several chapters, and a return to the hospital with undiagnosable pain. No cancer was detected after months of hospital stays, scans and tests. Finally we were given a cause for the pain: gallstones. We cheered for gallstones in the glass-walled tank that was her ER room. We were so relieved, and surgery was scheduled for the next week.
Then we received a call from her oncologist.
“It’s not gallstones,” we were told. “The cancer has returned.”
One year almost to the week after Mom’s initial diagnosis in 2020, we had to reread the chemo chapter.
“This time we are going to work chemo and cancer around our lives, not the other way around,” I said, standing chivalrously in front of my mom in the oncology office. However, my mom never needed to be defended or saved. She was always her own hero and she fought valiantly throughout the second round. We experienced another year of adventures. In between chemo, our family drank margaritas on the beach, we frolicked in the mountains, and we fished by a cabin on the lake. We decided not to simply survive but to thrive.
It was not until early 2022 that we were forced to face the inevitable end of our adventure.
“The ovarian cancer is actually stable, but your mom has developed triple-negative breast cancer,” the doctors told us.
I stared at my beautiful, healthy-looking mom, completely stunned. What a cruel plot twist.
“Perhaps it hasn’t hit me yet, but I feel happy with my life, and I know it’s just my time soon,” she said. She leaned on our kitchen counter and tucked her newly grown salt-and-pepper hair behind her ear, as she alternated between crying and laughing.
It was my greatest honor to witness her strength, her vulnerability, her honesty, and to have journeyed alongside her for so long. On that day, the villain in her story shifted from cancer and its treatment to the fear of dying. It was not leaving this Earth that scared her, but the unknowns of her specific, individual dying process and its impact on us. She hoped for peace for her family, who would watch her die.
My mom chose what’s known as medical aid in dying ― a legal medical process that allows terminally ill patients to self-ingest a medication provided by a doctor to die peacefully in their sleep on their own timeline. It was the finale she wanted for her 70-year adventure.
She was firm in her belief that dying from cancer did not have to be synonymous with suffering. She never asked, until that moment, if I approved of the ending she chose for herself. “Momma, I am so proud of you,” I told her, emphasizing that she was making the most courageous and loving decision for herself.
She lowered her head and softly cried. We discussed the plan for a small, peaceful ceremony, utilizing at-home hospice, that my wife, our two young boys and I would be a part of. We would say our perfectly timed farewells at home in peace before she took the deadly, self-given cocktail amid a backdrop of lavender scents, soothing music and prayers.
Two oncologists confirmed that she had less than six months to live (a requirement for medical aid in dying). She was sent home on hospice to die, and we maintained hope that the medical aid in dying option would be approved for her, and our ending would be the one we so desperately wanted. Many of the medical professionals she had worked with wished her peace on her journey as all care outside the home ended.
But the peace they had wished for morphed into something else entirely. Instead of her being able to die as she wished, we shifted to in-home hospice, with once-a-week visits from a nurse. My family became full-time caregivers, providing Mom pain medication around the clock, cleaning her, dressing her, and trying to make her as comfortable as possible while we clung to hope that her medical aid in dying choice would be fulfilled.
She lost her mobility, independence, the ability to hug her grandkids, and ― her worst fear ― her dignity. She was unable to move or communicate, other than grimacing in pain. Tears slid down her cheeks without any sound, while her eyes remained eerily half open. Her jaw no longer remained closed, and the liquid medication pooled and dried above her chin. When she choked on her own vomit as her eyes rolled back into her head, we completely panicked ― not understanding what was happening or how to help her. It was the opposite of peaceful.
She lived much longer than the initial prognosis in 2020. However, she did not leave on her own terms, even though we had a plan.
What went wrong? Who failed us? There’s a long list of people and reasons and red tape to blame for her medical aid in dying choice not being honored. None of the whys or whos or what-ifs matter now. All that matters is that she did not get to die the way she wanted to ― and she suffered immensely because of it. We all did.
Just 20% of U.S. states have approved medical aid in dying. Even though my mom lived in a right-to-die state, she was not permitted to see her choice through, and many others like her also have a difficult time securing the opportunity they so desperately want due to bureaucracy, doctors with differing opinions and beliefs, timing issues, and concerns about legal gray areas. We are not in the era of Dr. Kevorkian: Terminal individuals should have a choice and a legal right to end their own suffering. We should all know, and be able to secure, our options if we ever find ourselves facing our deaths.
This conversation is not about ending a life, but about ending suffering for someone who is already dying. As a storyteller, I know the ending always defines the story, and my mom wanted to choose how her story ended ― how she left this Earth. The decision of the person dying is the only one that should matter.
Until you’ve watched someone suffer ― after months of planning so they would not have to suffer ― you cannot fathom how empowering and loving the choice is. Home hospice was not what I expected it would be, and there’s no delete button for the traumatic memories now replaying on a loop in my head. I cannot go back and revise or skip that chapter for myself, my family, or my mom.
In the weeks before she died, even with the fear and sadness, she was graceful and grateful. “Thank you for trying so hard,” she told me. “I love you.” I was exhausted, angry and traumatized.
During the last days of her life, as she lay semiconscious, my mom heard me scream at those who indirectly put us there, and sob as I mourned the loss of the ending she wanted. I felt like I failed her.
We did not have the scent of lavender ― we had the odor of adult diapers and urine. We did not have soothing tunes ― we had the death rattle and cries of despair. We did not have prayers ― we had pleas for the universe to remove her spirit from the twisted, broken body that no longer served her.
As my mom lay dying in the pop-up hospital bed in our home, I promised to tell our story. Her story. How it went. How it was supposed to go. How brave she was. I felt a responsibility to share my mom’s story to eliminate fear or shame for someone else and their family. To acknowledge the gift of free will and choice that we should all be entitled to, and to create a strong community of end-of-life advocates.
Choosing your own ending ― or supporting your person in their choices ― is the most loving final farewell. I do not know how to advance a legal process that is almost prohibitive by design, and difficult for dying people to choose and then implement. I do not know how to make it more accessible, but I do know that I can begin by sharing my mom’s story.
May we all be as brave and courageous as my momma in deciding for ourselves how we navigate this one life and leave this Earth. One day, the pain of her ending will not perforate my everyday experiences and memories. I choose to remember her joy, her fight, and honor the daughter she raised.
My mom’s last full sentence to me was, “Please don’t forget about me.” She died on June 21, 2022.
Mom’s life may be over, but her story is not. She lives on in me and through all those who hear her story. I will never forget the one who taught me that life is an adventure, and we all write our own stories and choose our own ending. In her honor I will continue to educate and support those experiencing grief and trauma, to have honest conversations about the inevitability of death, and to fight for every person’s right to have peace as they leave this Earth. Her story lives on through me, and I will make it a page-turner.
Meghan Reese lives in Colorado with her wife and their two boys, ages 9 and 6. She recently overhauled her career from full-time nonprofit executive to full-time student, pursuing a master’s degree in clinical mental health counseling. She plans to combine her reiki master energy training with her future counseling practice to help others heal from trauma and grief and learn to thrive. Meghan honors her mom’s life and legacy by pursuing her dream of finally sharing her writing with the outside world (her mom’s final wish), supporting and counseling others, and by not letting grief steal her joy. Meghan is a first-time (but long-awaited) published writer. Connect and learn more about her grief and counseling journey on Instagram @grief_belief_and_all_the_shit.
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