Trisha White

Trisha White, who has metastatic breast cancer, reflects on her father’s painful and prolonged end-of-life experience and is grateful that she has the option of medical aid in dying in Washington, D.C.

“Now that I’ve completed treatment, I can honestly say it’s the easiest thing about having terminal cancer. It’s the thing we know how to do. We’ve all seen it in movies and TV shows. But what about the stuff we don’t know how to do? What do we do when we don’t have a cure and we don’t have another treatment?”

At first glance, you might not think my dad and I had much in common. He was a stern truck driver who dropped out of school to help his family during the Great Depression. City slicker. Bacon lover. I was an overachieving cheerleader, graduated summa cum laude. Country bumpkin. Vegetarian.

But we weren’t all that different. Both patriotic veterans, both independent and a little stubborn. I inherited his sweet tooth and we shared a yen for spaghetti westerns and gumshoe detective stories. Who knew we would have one final thing in common: facing difficult decisions at the end of our lives.

In 2011, after years of health challenges and with the blessing of his family, my dad chose to discontinue treatment and end his suffering by voluntarily stopping eating and drinking (VSED). Because medical aid in dying is not available in Michigan, VSED was his only option. We stayed by his side, hoping it would be peaceful, swift, and merciful. It was not. Even at 86 years old, underweight and in poor health, it took him three weeks to die. Three weeks in agonizing pain, in and out of consciousness and begging for death. Worse than the pain, every time he opened his eyes, he had to look in the faces of his daughters — helpless to do anything to comfort him — and know this was how his little girls would remember him.

By the time I left the farm after he died, my mourning was eclipsed by anger that my dad had to die like that. He deserved better and we were unable to give it to him. I was pissed. Watching him suffer reinforced my belief that people deserve access to humane end-of-life options.

Fast forward seven years — two months before my big 50th birthday celebration — I noticed a lump in my right breast. In February 2018 I went for an exam but wasn’t concerned. I had no family history of cancer and had a benign lump just like it removed from my other breast when I was a teen. Besides, I had done the walks, wore the pink ribbons and raised a bunch of money for breast cancer in the 90s so it couldn’t be cancer, right? My physician gave me a referral for a mammogram. He didn’t say it was cancer, but he didn’t say it wasn’t.

In March I went for a mammogram, expecting to go home that day and get a call later with the results. Instead, after I got dressed I was led to a dark little room where a doctor sat, looking at the images on her computer screen. She seemed afraid of me, unable to return my gaze. When she did, her face was a verdict. She pointed at the bright pictures on her computer and clumsily uttered her concerns.

“Do I have cancer?” I asked.

“I think so,” she said.

We calmly and matter-of-factly discussed the implications — does this mean chemo and radiation? Will I lose my hair? My breasts? How far along and how many other places could it be hiding? If you were watching with the sound off you might think we were discussing options at a car dealership. Heated seats? Anti-lock brakes? How many cup holders?

Walking home, I was too scared to cry. Should I tell someone? No one even knew I was going for a mammogram. Somehow telling another person would make it real and I wasn’t ready for it to be real just yet.

I started to think about the options:  Behind door #1, another benign tumor. Door #2, a curable cancer. Door #3, a killing cancer. Hope like hell for #2, but mentally prepare for #3.

Finding out which door was no small matter. The next two months were a blur of different doctors in different buildings putting me in big scary machines and using big scary words. Tests and scans and biopsies, oh my. And needles. So many needles. God, I hate needles.

To keep the secret I had to sneak around to all the appointments and lie about my whereabouts. The lie I told myself was that I didn’t need to tell anyone until I had the full diagnosis.

And then it was time. Another cold little room. Another sweet doctor who won’t make eye contact. After what felt like hours of small talk, she said: “The scans found spots in your lung.”

My vision blurred. I could only hear her in snippets, like we had a bad connection. “…irregular…spread…stage four…”

Stage four. There is no stage five.

“Am I going to die?” I asked.

“Your cancer is treatable, but not curable,” she said.

Four days before my birthday my oncologist called to say lung surgery couldn’t wait — the big spot in my lung was so close to my heart that a biopsy would kill me. Four days after my birthday, I was on the operating table.  

In between, I indulged in a week-long birthday celebration of dinners and drinks, outings and road trips, and even a baseball game. A week of laughs with people I love. No sad faces, no pity and no tears. No, I didn’t tell anyone. It’s my party and I’ll lie if I want to.

With the lung spots removed and tested, the doctors finally had enough information for a full diagnosis: stage 4 metastatic breast cancer, invasive ductal adenocarcinoma. My oncologist recommended an aggressive treatment: five months of chemo to shrink the lime-sized lump before a double mastectomy and six weeks of daily radiation. Easy peasy, right?

And with that full diagnosis and treatment plan, I no longer had an excuse to keep the secret. I told family first but procrastinated as long as possible with everyone else. Telling would be the final stitch of control over my life before the C-word, and nothing would be the same after that.

On May 21, 2018, I sat in that chair for the first time. A kind nurse in periwinkle blue scrubs started my infusion with the first of four drugs that would be administered over seven hours. In three days, I would be very sick. In 18 days, my hair would begin falling out. I was officially no longer in control and very soon it would show. I posted a carefully worded “I have cancer” status on Facebook, took a deep breath, and cried.

No one tells you that the hardest part of having terminal cancer is hurting people that you love. Telling them your diagnosis and watching them cry. The hospital sends you home with a binder of information on everything from how to care for mouth sores to where to get a wig — a “Cancer 101” if you will — but what’s the etiquette for telling your best friends? Where’s the Hallmark card for telling your mom you’re going to die before her?

Now that I’ve completed treatment, I can honestly say it’s the easiest thing about having terminal cancer. It’s the thing we know how to do. We’ve all seen it in movies and TV shows, we know someone who’s been through it. We know the drill: show up, do the thing, get the needle, get the knife. Go home, puke, rest, recover, repeat. People bring you food and cheer you on. You’re an inspiration.

But then what? What about the stuff we don’t know how to do? The stuff we don’t talk about because it’s too scary. What do we do with people when we don’t have a cure and we don’t have another treatment?

Sure, medical science keeps improving and the elusive cure for cancer seems closer than ever. Thanks to a new drug, a cancer that would have killed me in two years can now be held off for as many as ten. That means more birthdays and ballgames and I intend to enjoy every one of them. 

But medical science can be a double-edged sword. Science could have kept my dad alive for much longer. But at what cost?

My dad understood the difference between quantity and quality of life. In the end, his quality of life was so diminished, home felt like a prison and living felt more like punishment.

Unlike my dad, I live in a place where medical aid in dying is an option, thanks to the brave souls who fought for many years to pass the District of Columbia’s Death with Dignity Act in 2017. Unlike my dad, when my time comes, I won’t have to starve myself to death and ask loved ones to watch me suffer.

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