Since Brittany Maynard, 29 shared details of her terminal brain tumor – and her choice to end her life Nov. 1 after moving to Oregon, one of the few states with assisted dying laws – strangers from around the planet have surged to social media, begging her to try last-ditch cures. But away from the pleas, the politics and the proselytizing her decision has stirred, she’s found a unique vantage point on an eternal philosophical question: If you knew you had weeks to live, how would you spend that precious time?
Up until last New Year's Eve, I thought I was a healthy 29-year-old woman, one who just suffered from very painful migraines. I had lots of big plans for the life and family my husband and I were working to build.
I didn’t want to die and had no thoughts of dying the weekend my husband and I went away to celebrate the holiday up in California's Wine Country. However, my headaches were increasingly painful that weekend, and I started vomiting uncontrollably without reason after our arrival. My symptoms frightened my husband and he drove us to visit the local hospital on New Year's Eve day. From that moment on, our world pretty much came crashing down around us. After a CT, I was transferred by critical care ambulance to another hospital close to our home. There, I was given an MRI, told I had terminal brain cancer and that I would die.
I don’t want to die. But I am dying. Terminal brain cancer is killing me.
After my initial diagnosis, my family and I worked hard to have me transferred to the University of Caifornia, San Francisco, a major research hospital and the top West Coast neuro-oncology center. We searched desperately for a cure, even in the face of being told no life-saving measures were currently available. I read scholarly journal articles on glioma cancer treatments, and I applied for some clinical trials that I never seemed to qualify for. On one occasion, I sent all my MRI photos and paperwork to a major research hospital and didn’t even ever hear back from them. It was a frustrating process that was primarily self- and family-driven.
My best friend is a physician who helped me seek information and resources. Right before my craniotomy, she introduced me by email to a palliative care doctor in Oregon about whom she had heard really good things. I sent this doctor a video of myself, describing my case and my intentions in the event I suffered losses under the knife on Jan. 10. Thankfully, post-op, my partial craniotomy was a general success. Surgery relieved some pressure in my brain and created new space in my skull, through a process called tumor “debulking.”
In a college philosophy course, my class had discussed "death in dignity" from an ethical perspective. I agreed with the idea philosophically at the time, but I never imagined applying the idea to myself ... that is until I became terminally ill.
After some research, I learned Oregon had been administering the "death with dignity" program longer than any other state. It was also the closest DWD destination to my home in the San Francisco Bay Area. My family and I flew up and met with the physicians administering palliative care, and those administering the "death with dignity" protocols, and I genuinely liked and trusted them. We decided to move. I worked to establish relationships of open communication about my disease. For the first time, my doctors were willing to openly discuss death.
One thing I have realized throughout the course of this illness: It is very important to find doctors with whom you can trust and work, and that is not necessarily going to be the first doctor whose office you walk into. Some physicians are themselves uncomfortable discussing elements of terminal illness and death. I found this to be very surprising but, sadly, not uncommon. Some physicians are not comfortable admitting when there is no clear answer to something, while others are. I gravitated toward doctors who made time for me as a patient, those who were candid, humane and honest.
Currently, I am being treated with a plethora of medications. Most are meant to extend my comfort level, control seizures and reduce swelling in my brain. Everyone’s brain is encapsulated by their skull, so swelling can be a big issue. Swelling leads to pressure against one’s ventricles and fluid retention, and can contribute to seizures and a great deal of pain. This pain can eventually become pain killer resistant, and for me that is sometimes the case. The pressure is worse for me when I lie down, and it can be very difficult to sleep. Then, it continues on through the morning. That is just the current stage of my disease. I am light-sensitive, noise-sensitive, suffer chronic pain, balance issues, unpredictable seizures, (post-seizure) speech interferences, nausea and more… the meds themselves have led to uncontrolled water retention, weight gain, skin changes, bruising … I could go on.
Things could be so much worse, and they would be so much worse if left unchecked as my brain tumor progresses on its pathway to killing me.
My choice to pass away in early November? Psychologically, it helps me to pick a date and have something that my family and my closest friends can plan around. That is my choice. My husband’s birthday is near the end of this month, and it is so very important to me that I live to celebrate his birthday. I was in the hospital over a week ago after multiple seizures, unable to speak clearly or keep fluids down. I was vomiting and dry heaving in pain. I was frightened and after this all passed, I decided it was time to choose a day to die ... MY CHOICE. That is the whole point of "death with dignity," that the choice is in the hands of the terminally ill patient. The choice to change the date or change my mind all together belong solely to me.
I live my life according to the ideal of "seize the day." Enjoy what is beautiful. For me, these are the relationships that I’ve cultivated and the wonder of our natural world. I don’t take either for granted.
Right now, I am cherishing my moments with the people who matter most to me. Early in my diagnosis, I had a doctor tell me directly that he didn’t think I would be on my feet for more than a couple of weeks. In my heart, I knew I had more than that in me and so I took a beautiful, life-changing trip to Alaska with my best friend and mother. I also enjoyed Yellowstone with my husband and British Columbia with my mother. I have moments and memories from those trips that I just wouldn’t trade for anything. Last week, my family and I took a more local trip to the Columbia Gorge because my energy is declining and it is hard for me to travel long distances. I still hope to see the Grand Canyon before I pass, a dream I have not let go of.
On a daily basis, if I feel good, I enjoy taking short hikes and walks with my family and dogs around Portland. I can’t do things on my own anymore because my seizures are unpredictable. At first this was hard, but now I treasure every moment with the people I adore. I love kayaking for an hour in a double with my husband in the seat behind me. Riding a rental bicycle down the boardwalk by the river with friends and family feels great. Getting outside brings me true joy.
At the rather young age of 29, if I have any advice to share, I would just say: Pay attention to the relationships you cultivate in life, and do not miss the chance to tell those you love how very much you love them. Seek out real meaning in your life, build from your passions, and stand up for what you truly believe in and support.
Brittany Maynard has opted to devote part of her remaining time to expanding the “death with dignity” option to all Americans. Read more at The Brittany Maynard Fund.