Shelby Marcuse

Shelby shared her story in August of 2023.

On January 13, 2023, I called my mom as I got ready for my baby shower. She was dressed and about to step out the door for the five-minute drive from her house. But an hour later, she still hadn’t arrived and wasn’t responding to my texts or calls. I logged into her doorbell camera from my phone. What I saw was my mother lying in her front yard, surrounded by paramedics.

We’d known that my mother was having some health issues since the prior summer, when she remarked that she was losing weight without trying to. At my encouragement she saw her primary care doctor, who found that her liver enzyme numbers were off and told her to stop drinking alcohol. Mom rarely drank and told him so, but he completely disregarded her and said they would test again in six months.

The day of my shower six months later, my mother was whisked to the hospital. She’d had a COPD episode, and because she had fallen, the hospital staff did a scan. It revealed nodules in her liver.

Over the next few months, Mom continued to deal with doctors who failed to dig deeper into what the scans showed. Meanwhile I moved back to Colorado Springs from Texas, where both of us had been living at the time. The plan was for Mom also to move to Colorado to enjoy time with her grandson at some point in the coming year. When I gave birth in mid-March, Mom came to visit, still undiagnosed. Yet we knew something was very, very wrong.

Two weeks later, Mom was diagnosed with bile duct cancer. It was terminal; she was given three to five months to live.

Mom’s diagnosis and prognosis expedited the plan for her to move to Colorado. First, though, she did two rounds of palliative treatment — a blend of chemo and immunotherapy — in Dallas. The treatment was very hard on her; she experienced exhaustion, loss of appetite, loss of balance and severe brain fog. She’s always been a cat lady, never having fewer than five cats in her home, and I discovered that there were times when she was feeding her cats rather than feeding herself because she lacked the energy to do both.

After Mom moved in with us, she did one last round of treatment here in Colorado Springs. She was reclusive during that time, not like herself. She told us later that the “chemo brain” was so bad that during her treatment she didn’t know who she was, where she was or who we were. It was profoundly terrifying for her. Then the doctors announced that she didn’t have enough platelets to continue chemo. Rather than delay further treatment, in mid-July Mom decided it was time to enroll in hospice.

Initially she didn’t have much pain, but the pain has been getting progressively worse, requiring updated dosages of her medications. More than the pain, she’s been upset by her lack of energy. When you’re diagnosed with a terminal illness, people say, “Go to Fiji; go to Tahiti; live your best life.” Her response is, “I can’t even get off the couch.”

Mom and I have always been documentary nerds. We used to go to the documentary festival in Hot Springs, Arkansas, every year, and that’s where we saw How To Die in Oregon. Since then, she’s been very vocal about wanting to have the option of medical aid in dying if she needs it. She’s always believed there are no rewards for suffering and no magical place she’ll go to if she suffers through a terrible disease. She saw her own mother suffer and wither away, and Mom is very adamant that she doesn’t want that for herself.

I knew medical aid in dying was available in Colorado but didn’t know much about it. I started digging into the requirements shortly after Mom’s diagnosis. While hospice was supportive, they said they couldn’t prescribe the medication and didn’t know of anyone who could. Next we talked to Mom’s oncologist, who essentially said, “That’s not in my purview; good luck.”

When I was five years old, Mom was in a debilitating car accident that left her on disability for many years. Late 1980s Colorado Springs did not have a lot of advanced medicine for rehabilitation for someone like my mother, but she was inventive and tenacious, teaching herself to read and drive again. I still remember learning to tie my shoes while she relearned the same. At one point she had 12 tons of rocks brought to our home so she could pick up one at a time to build her manual dexterity back. Growing up in that environment brought us very close and made us each other’s partner and advocate.

This situation was no different. After running into several dead ends and contemplating the challenge of making multiple four-hour-plus round trips to Denver with my mother, we eventually got connected with Denver Health’s medical aid-in-dying program. It was a godsend. Thanks to their referrals, Mom was able to do a Zoom call with a provider who asked her questions and established that she was of sound mind. It’s not a conversation I would have expected to leave feeling better, but the doctor was so genuinely compassionate and understanding. Then we had another appointment with the first doctor and a second provider who also reviewed all Mom’s info and asked the necessary questions. Finally the doctors sent the prescription to a pharmacy, which FedEx’ed us the medication. All in all, that process was about two and a half weeks.

Just having the medication in her possession has lessened my mother’s anxiety immensely and significantly improved her mental health. She might not take it any time soon, but at least the option is here for her.

Now we’re starting to have conversations about what Mom wants her last moments to look like should she choose to use the aid-in-dying medication. We’ve asked if she’d like a particular type of music, food, candles. But she’s always been a minimalist, quite content with her book, her cat, her TV shows. She’d like for my husband and me to be there at the end. And she has selected her burial outfit: sequined flare ombre pants, sparkly ballet shoes with silver stars and an iridescent tank top. That’s what she wants to wear into whatever comes next.

Between now and then, Mom is making the most of her time with my son. Seeing him hit developmental milestones, holding him in the bed or on the couch, it all brings a smile to her face. As long as she still has good days, that’s what we’re committed to.