This is where we're at now

Some phrases stick with you forever

Photo by Sudipto Chowdhury on Unsplash

My hands were folded, my eyes locked on my rapidly tapping toes. I exhaled.

"This is where we’re at now,” my doctor said. “We’ll do the best that we can.”

Though I had no new fatal diagnosis, my existing condition suddenly felt terminal. I lifted my head and took a sip of my water. For the first time in years, I wanted something stronger. It didn’t matter that it was morning or that I had to go to work. I just needed something to distract me. I couldn’t think about this, but there it was in front of my face, likely to follow me along until the end.

I’ve known for a long time that the life expectancy of someone with my condition (Peutz-Jeghers Syndrome) is 57, but doctors and therapists spent years convincing me that modern medicine changed the game. They told me I had nothing to worry about and that I had no need to think of this as a cancerous death sentence. As it turns out, they were wrong or simply placating me.

“What does that mean?” I asked my doctor.

She told me that my options become more limited with time. The treatments become less effective with each procedure or surgery. Some options have already been ruled out and the existing ones may be of little benefit. In what is barely a metaphor, they can still offer me bandages but not stitches.

“Bummer.”

She continued on, but I do not remember what else she said. I imagine that was due to both an inability to focus and an effort to block it out. White noise turned on in my head and one word pulsated in my brain: cancer.

My mom had the same hereditary condition as I do. She battled cancer for the better part of a decade before succumbing to the disease at 57. That’s how the condition finally does you in.

Given that I’m now in the race towards 57, it feels like the C word is in my near future. PJS offers a wonderful buffet of elevated cancer risks: stomach, small bowel, pancreatic, and lung are just some of the options. I’d tell cancer to eat me, but that may already be its plan.

In the past, I focused on the pain and suffering associated with cancer. I worried I would not be strong enough to fight it. Today, I have a different perspective. I think of my kids.

I have a hard time remembering what my mom was like before cancer turned her into a walking ghost with little more than some skin and bones. My dad, however, passed suddenly. Though he was in poor health, I can think of him as he was when he died and when I was young.

So, what is better for my kids? Would wasting away weigh heavily on them? Would I be a financially and psychologically expensive burden to them? (For the record, I’m not saying that’s how I viewed my mom.) What if I get to a point where I’m completely dependent on their help, along with the help of hospice care? What if all they remember me by is how I will be at the very end?

Conversely, what if I just go as is? Will it take less of a toll on them? The associated expenses of prolonged cancer care wouldn’t be there. They won’t have to think of important moments in their life in which I need to be wheeled out, my head bobbing and eyes vacant. I just wouldn’t be there.

Which is the lesser of two evils?

I never planned on making it to adulthood. When I did, I never planned on going through cancer treatments. In both instances, a bullet through the head seemed like a better option. Now, I have reasons to live that I never thought I would be lucky enough to have.

If the day comes when I am diagnosed with cancer — and that feels inevitable at the moment — what do I do? How do I know what’s best? Could my family move on more quickly if it all ended quickly? Or, would they prefer if I was an empty vessel trotted out for special occasions?

If you plan to stick around as long as you can, there’s still no telling when it will all end. Although my mom suffered for a long time, she was still gone way too soon. She missed all the big events in her children’s lives like marriage and grandchildren. That was the one of the worst scenarios: long-term suffering without the payoff of being there for the special moments. I really don’t want that scenario for anyone.