A Roller Coaster Called Cancer

When I was kid, I liked roller coasters. I wasn’t a roller coaster nut but I was a fan. What I didn’t like were the rides that spun you upside down or in circles real fast. Often I’d think I was brave enough for a ride, I’d get on it and soon I’d be screaming for them to stop the ride. It was absolutely horrible.  As I got older, I still liked roller coasters, but at some point, my stomach started to disagree and I had to face the music that they weren’t for me.

As I roll into my 8th year with myeloma, this cancer journey has been a heck of a roller coaster ride, both physically and mentally.  I recently shared that I was battling intense anger. It’s much better now thanks to self-talk and going back onto anti-depressants that one of my doctors suggested I get off of. I told my main oncologist about the anger and he correctly suggested I deal with it.  The anger is still there but it’s much less and I’m trying to channel the energy towards more positive things.

Wanting to get off this myeloma ride

I’ve come to understand that the anger was and is me screaming to get off the ride. In this case, the ride is cancer. I was feeling particularly done with the cancer. Done with never ending doctor appointments, calls to insurance, lab tests, bills, physical worries. Add to this, I’m turning 58 this year and I hadn’t seen a primary care doctor since before being diagnosed. I decided I should get a complete physical to see if nearly a decade of putting toxins into my body was damaging my organs and general health. I’d also been dealing with my at times frightening head and neck twitches. It took FOREVER to get an MRI done. The results are in and I’m in decent health (putting aside the cancer). So that’s all good.

But the fact remains, I have an incurable cancer.  I can’t just say I want off the ride and instead go to a booth that sells large turkey drumsticks and frozen lemonade.

Starting a new cycle

As I write this, it’s day 1 of a new cycle. I had my 5-hour Darzalex infusion earlier today. It starts off fine. I get a large dose of Benadryl and doze off into a pleasant loopy land. I wake up, have a snack, write loopy emails to friends and family, watch a movie and cruise to the 4-hour point. The last hour though, the steroids kick in and I get antsy and bored and ready to get the heck out of there. It’s like a roller coaster within a roller coaster if that makes sense. I also take an oral chemo at night for the next 21 days. Then I get a week-long break. Then it all repeats again. The great news is that this regime that I’ve been on for over two years is still working great. So I tolerate it.

And don’t get me wrong, I feel very fortunate and grateful to be where I am, especially given where I started and some of the scares I’ve had.  March was Myeloma Awareness Month. My wife ordered us myeloma warrior sweatshirts from the International Myeloma Foundation.  Up to now, I’ve been a little hesitant to wear something that highlighted I’m a cancer patient. Why? I don’t know. But I think I’m ready. I need to get on the ride.