A Cancer Survivor’s Perspective
2020. The year no one predicted, except for maybe Kate Winslet. The year that bore new terms like, social distance, touchless carryout, stay-at-home order, 6 feet apart, e-learning and virtual-visits. The word Zoom, was fired by the verb police and promoted to full-time noun. Zoom became our newly appointed captain of communication. We found out that toilet paper can be a hoarded commodity. Even the Walking Dead predicted it. We also think about whether or not our masks match the clothes we wear. This is the world we live in now. It’s hard enough for a normal person to weather this perfect storm. How does a cancer survivor with a compromised immune system find safe port? Truth is, I’m not sure I’ve found it yet, but I can tell you what’s helped.
As an artist, growing up in high school, I often day dreamed about what my life would look like in 25 years. I imagined a large drafting table in a huge studio. The walls would be adorned by past works, interesting accent lightning and large windows that would allow the sunshine to play unfettered on the hardwood floors. I'd spend the day perched at my table, Mountain Dew within reach, with my favorite songs echoing in the background. And then my dream would be sharply interrupted by a teacher telling me to get back to work. I would scoff, then repeat the process the next day. Fast-forward to Summer, 15 years later, I’m recovering from cancer treatment and a bone marrow transplant. Afterwards, I was told I needed stay home. Self-quarantine, as it were. No restaurants. No swimming. No turning soil in the backyard and absolutely no movie theaters. I didn’t care, because being home was better than being in a hospital, even if I couldn’t spend much time outside. Take it from me, you don’t want to spend two months straight in a hospital. Those four walls can break you. Or, almost break you, rather. I remember writing a lot during that time period. Mostly blog posts to keep people updated. I tried to be humorous and funny. I actually spent quite a bit of time planning my next posts, even days ahead. When something interesting or dramatic happened with my treatment, I was able to supplement my writings with that. It helped pass the time. I still remember writing about an in-resident doctor performing a bone marrow biopsy on me, which is a bit like watching rookie try to uncork a bottle wine with an ice pick. The nurses even let me build model cars in my room. I even had a small paint booth in my bathroom. Yes, I did that. The bathroom had an exhaust fan, so it made sense. Little did I know, this time period was all just a warm-up for what was to come.
26 years after my high school art room fantasies came March 2020. The world shut down. Businesses locked their doors, employees were furloughed and our virtual journey of communication and productivity began. Captain Zoom was in full-effect. Like many, my wife and I both started working from home mid-month. Fortunately, we are both blessed with good jobs that afford us that luxury. We don’t have kids, so we weren’t faced with those challenges. Days went by. We could eat lunch together, which didn’t happen often. We'd swap stories about which birds we spotted in the morning hours beforehand. We‘ve even named a few of our feathered-friends and have plenty of birdseed on ‘subscribe and save.’ I’m certain we’ve taken close to 2000 pictures of them. I had to send my 600mm lens in for repair this week. I’m pretty sure I’m having anxiety without it, but I'm not blaming the birds. At any rate, we’ve learned more about them in the last 12 months than we have our whole lives. Stuart, our resident Woodpecker sends his regards.
Obviously, we spend a lot of time at home. So, how do I feel about leaving the house these days? Honestly, the same as I did before all this. Having been restricted in the years prior afforded me the awareness to navigate this frontier because I was already somewhat familiar with it. Masks were even required in the waiting rooms at the University of Chicago, years before pandemic. It's common practice when you're entering a space where there are folks with compromised immune systems, like myself. We didn’t question it. Nobody was shot over it. You just wore the mask, if for no other reason, out of respect. What a concept.
Take a moment and think about every place your hands touch: Door handles, push plates, light switches, sink faucets, toilet flushes, condiment dispensers, chair arms, gas pumps, hand rails, pens even! We’ve all used that pen that’s held captive, tethered by a chain to the desk in the bank. Think of how many people touched that before you did, and where their paws were prior. Think of every credit card console you’ve entered your PIN number on, or the ATM machine keypad. Your fingers are kissing whatever the former user ate last. The one that still gets me is the butter dispenser at movie theaters. Picture it, you’ve just bought your popcorn and you turn your eyes to the butter dispenser. You take 3-4 pumps of that luscious buttery goodness and walk to your theater, knowingly, yet unknowingly allowing all those germy artifacts to hitchhike with you all the way to your seat. Then you eat all of your popcorn by hand with the same hand. Gulp. I get it, though. We’ve all done it, myself included. But now, we’re a little more ‘awake’ about it. At least, I hope we are.
About a month ago, I was listening to a podcast while I was working. The host asked the actor how he keeps creative during a time such as this with the pandemic. They mentioned that they learned recently that you can’t be creative when your mind is in survival mode. Your mind has to be proactive that way when its first priority is to protect one’s self. In turn, the creative side of your brain takes a backseat. Interesting, I thought. I suppose I agree with that, to a certain degree. I mean, if an axe murderer is charging me, I'm probably not thinking about drawing my next masterpiece. But, given its context in this pandemic situation, trying to stay creative or even in some cases just stay busy, I think, was, and still is, a crucial part of my journey, past and present. Doing that, helped me to get through some of those times I mentioned before. When I couldn’t draw, I built models. When I couldn’t play guitar, I learned to shoot a camera. I wrote. I still write quite a bit. Lately I’ve been laser-focused on my music. I enjoy writing and composing songs. It helps me process. I have found that sometimes staying busy allows me to stay 'out of my head' so to speak. Although, I've been known to journey back inwards to revisit some of those filed thoughts, blow the dust off of them so they see the light of day again, where they can translate into something positive, like a song. Staying creative and busy helped me to survive that, and ultimately, this.
I also decided to change up the surroundings in my workspace too. I bought some new lamps, hung up different pictures and hung my guitars on the walls. I think it helps to freshen things up every now and then, so you're not staring at the same mundane things every single day. Also, get out! Go for walks. I try to walk as much as I can. It gets you away from a screen and out into nature. It allows your mind to reset just a little. Even something as minor as a different smell can help my mood lift at times. Like, that moment in late March or April when you smell cut grass for the first time after the long winter. Or, the smell of a lake on a Spring breeze. Or even the smell of Summer air clinging to your dog’s fur as they come in the house. I won’t mention Autumn leave’s smell yet. Let’s not get carried away. I’m still reeling from Winter after all.
For now, my Oncologist has advised me to wait just a little bit longer on the vaccines. Why? Vaccines (of any kind not just for COVID) have a tendency to cause what we call a ‘flare up’ with my graft vs. host disease. Or GVHD for short. My immune system could potentially be sent into overdrive as this has happened with my prior vaccinations. Breathing problems, rashes and pneumonia are the worst ones I’ve encountered in the past, so far. I also have more milder problems with skin tightening and flexibility too. Which, is why I remain on low doses of Prednisone to keep it in check. So, the plan for me as of today, is to let everyone around me get their vaccinations so the people I interact with the most, will be protected and I’ll be, in turn, protected from them. At least, until we know more about what possible flare-up effects I may or may not endure, as a result. In a nutshell, we just need more data to better understand my potential immune response.
We’re almost there. Things will normalize. It will be a redefined normal, but a new normal nonetheless. It’s been hard, yes, but we’ll persevere. That’s what we are best at, right? Enduring? Perseverance? Cancer tried once to take me out, and I said ‘no.’ I’ve often thought of myself as living on borrowed time. I'm a time thief. A bandit, who's stealing moments of joy and continuance for posterity’s sake. Because, you guessed it...things can always be worse. If I’ve learned anything, it’s that perspective is a humbling anecdote.
Be kind.
-Jonathon