It was the kind of warm evening you look forward to after such a long winter. Days of rain left the air sticky enough to remind you summer was right around the corner, but cool enough to let you know it’s still spring. It felt nice. It was welcome.
I was running errands, some groceries here, cat food there, and always music. I can’t play an instrument or hold a tune or read a note, but I love music. I feel it more than I hear it, and I sing along as I drive. Couldn’t tell you who was singing with me. Could have been Nina Simone. Maybe it was Tom Petty. I don’t know, but I know it felt good.
My phone rang, echoey through the bluetooth and breaking into my duet. It was Duke University calling to remind me of an upcoming appointment, a robot voice needing me to press one to confirm.
You have an appointment with…………at Duke Cancer Center.
Then it hit me. Oh yeah, I forgot. I’m sick.
In these half dozen years, there haven’t been very many moments where I’ve had the luxury to forget I’m sick. There have barely been moments when I’ve been able to catch my breath. But here I am, forgetting that I’m sick.
I made my last appointment in a frenzy of anxiety, fully convinced my tumor was growing yet again. The swelling and pain my daily reminder of the threat that lurks beneath the surface of my skin. It was a relief to find that my swelling and pain was not caused by a growing tumor, but rather by inflammation and swelling that so often happens with desmoid tumors.
I opted to take the advice of my oncologist and start a short course of steroids. The side effects were sometimes unbearable, but the few pain free months I had were well worth it. The closer I get to my next appointment the quicker the pain creeps in, but I get it now. I know this is my new normal. Pain that doesn’t necessarily indicate tumor growth, just a reminder of the time bomb living in my hip and thigh.
But for those moments, in the sticky sweet air, singing along to who knows what with who knows who, I was lucky enough to forget I was sick. There had never been any doctors, no poking and prodding. There were no memories of bloodwork or IVs or having my feet taped together as I was strapped to a board and slid in the tube time after time. No surgery. No physical therapy. No walker, No cane. Then…..
You have an appointment with…………at Duke Cancer Center.
And those moments were a luxury, in every sense, for I am one of the lucky ones when it comes to desmoid tumors. I am fortunate that my tumor is in my leg and not my abdomen or chest wall. I am fortunate to have had only one surgery. There have been no amputations thus far. I’ve found two specialists along the way that understand my disease. I’ve only had to try four medications before I found a regimen that worked. So far, fingers crossed, I’ve only had one recurrence. In the realm of desmoid tumors, this is pretty good stuff.
I had a day where the pain was minimal. My spirits were up. I wasn’t bogged down with worry about the future, sadness about the past. I had enough money in my pocket to get what I needed. I had some energy. It was like nothing had ever happened. And I never imagined what a luxury it was until that phone call reminded me that I am indeed sick and I have been through hell. It was a luxury that I failed to remember it could happen again at any time.
Believe it or not, those moments were also a curse. Complaints about traffic, needing to get in and out of the car. Feeling my time was wasted having to walk back and forth, over many aisles to find what I need. Being one of many waiting in the big, long line. The dishes that wait for me at home. Such a hassle. What an aggravation. Then…….
You have an appointment with…………at Duke Cancer Center.
Oh yeah, I forgot. I’m sick. Oh yeah, I forgot I used to not be able to walk. Oh yeah, I forgot it could all be so much worse. Oh yeah, I forgot I’m lucky to be here.
And that’s where I’ll be when I’m in the tube this week, somewhere in between the luxury and the curse. Well enough to occasionally forget I’m sick. Far enough away to forget about the pain, the hair loss, the nausea, but able to be annoyed by all the little things that don’t matter in the end. Equal parts nice and not.
And I’d like to think that’s also where I’ll be in life. Well enough to appreciate less fear and less pain while keeping the reminders of where I was and what could be close to the surface, forever stoking the embers of gratitude. It’s a balancing act, a coordinated effort, a swim in two oceans at the very same time, skills at which me and my bum leg are not terribly adept. For now, I’ll consider myself lucky. For now, I had a day. For now, I’ll be happy to just dip my toes in both waters. Eventually, hopefully, one day I’ll swim.
Originally published at imsickandsoareyou.com