With cancer in the family, my SMA has been out of the spotlight

I’ve been putting off this column for months, I guess in the hopes that it’d become easier to write. I didn’t want to go public until I knew for sure that everything was going to be all right, hence my disappearance; my column was the only public-facing endeavor I maintained.

But you can’t ignore the inevitable, and with the annual Cure SMA conference coming up next month, I figured it was time to rip off the Band-Aid.

Last October, my dad was diagnosed with cancer.

The warning signs

My mom and I suspected for months that something was wrong. But cancer is the kind of thing you can’t think about too much, so for most of 2024, we didn’t think at all. We vacationed on Lake Superior. We drove all the way to Myrtle Beach, South Carolina, to buy an all-terrain wheelchair. We hoped and prayed and hoped some more. But it wasn’t until a long-awaited medical test confirmed what we all had been dreading that we faced reality.

Dad had colorectal cancer.

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It didn’t feel real. It still doesn’t. Cancer is my greatest fear in life. Deep down, I always assumed I’d be the first in my immediate family to get cancer, so to have my dad — my best friend and primary caregiver — end up with it felt particularly cruel.

Thanks to the miracle of modern medicine, he was quickly diagnosed with stage III colorectal cancer, specifically a rare subtype that responds well to treatment. That was good news. Even better was that the cancer had spread only to the surrounding lymph nodes and not any nearby organs. He’d start with six weeks of chemotherapy and radiation, which ended on Jan. 1.

We were relieved to have some answers, finally. My dad had been suffering for over a year with no end in sight, so to know what was going on — to have a plan in place — was no small thing. But I was still on edge. We all were. My dad had cancer, and our lives were about to turn upside down.

The great reshuffling

About this time I logged off social media. I shelved my fun little fantasy novel for something more tonally appropriate, a book about mortality and living well in the face of death. My mom did what she always does, which is to keep our ship of three above water while the rest of us were more than happy to sink.

With my dad mostly out of commission, we needed additional caregivers. Luckily, we’d just hired our first personal care assistant since pandemic times; my dad finished her training just as he was about to start treatment. My mom took over my dad’s shifts while I adjusted to having caregivers around again. I even had my first night shift with a caregiver.

Suddenly, without warning, I was no longer the sick one of the family, in a sense. My SMA fled behind the scenes, which was fine by me; I could barely handle his illness, let alone my own. But since I was no longer the one with the most attention-getting illness, I was also no longer responsible for keeping things light. I couldn’t alter the mood with a well-timed joke. It was out of my hands, and thus out of my control.

By the grace of God, takeout, and copious amounts of television, we made it through. Treatment went better than anticipated. We celebrated Christmas with less fanfare than usual, and then he was done; all we had to do was wait for his next full-body scan in April, which would tell us if the treatment had been successful.

For a while, things went back to normal. Dad had energy for the first time since my mom retired in May 2024. We started dreaming again — about moving to a new property, traveling in the RV, enjoying the beach in my all-terrain wheelchair. If I’m honest, we kind of forgot he had cancer.

April arrived with a rush of emotion. We had no idea what to expect going into the scan. We were scared to hope, but hope we did.

The tumor had shrunk considerably. His oncologist decided to postpone treatment until the fall, when another full-body scan would determine next steps. While there was no way to know for certain, she seemed convinced the cancer would not return. His surgeon ordered a follow-up colonoscopy to be sure, but seemed pretty optimistic as well.

As I wrote above, it doesn’t feel real. It feels like it happened to someone else, a parallel version of my family with terrible luck. But it did happen. It happened, and we survived. We’re not out of the woods quite yet, but one thing is for sure: We’re all really looking forward to a weekend at Disneyland.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.