A few weeks ago, I came across an article on the New York Times website titled Lost in Transition After Cancer by Suleika Jaouad. I was absolutely floored by this article and appreciated its unabashed description of something that I too have struggled with, even 6 years after treatment. Please read Suleika's article first before continuing on to mine. Go ahead. Click here. I'll wait patiently. I've never met Suleika, but after reading her article, I have a tremendous amount of respect for her for being courageous enough to share with the world her own story so intimately. This is my attempt to do the same, and I thank her for giving me the courage to do so.
Much like Suleika's situation, I too had went through similar treatments with chemotherapy, radiation and eventually a bone marrow transplant in 2009. I wrote about it regularly. The daily blog posts kept me somewhat sane as I tried to focus myself on the positive sides of being stricken with something that wasn't supposed to happen to me. I tried to seem witty and even comical at times to maintain an "I can deal with this" attitude. I'm a decent writer. An artist. A designer. A husband. A brother. And a son. I treated people with respect. I paid my bills on time. I kept my mowing lines straight. I didn't sing in the shower, but I sang in my truck. I played guitar. I signaled my intentions when driving. I played with my dogs and helped my neighbors when they needed it. Who did I piss off in a past life to deserve this? Six years later, I still often wonder.
During the Spring of 2009, the post-diagnosis war began. It's the war that took place behind the curtain. The war I didn't write about. I didn't know it at the time, but this was the time that would forever change who I was as a person. With each visit to hospitals, local clinics and Universities, my once strong mental health foundation began to slowly crumble. Not only was I fighting for my survival physically, I was fighting to keep my emotional state from completely unraveling. And I was failing. I put on a brave face to my friends and some of my family. They'd ask how I was. I'd tell them I was hanging in there. The reality was the polar opposite. I was scared. I was afraid I was going to die. Alone. I was afraid that my wife and my family would have to plan my funeral. I was afraid that I wouldn't get to do all the things I wanted to do, before my actual time came. I had no idea what those things were, but I knew I wanted the chance to find out. Others I knew who had been diagnosed with Leukemia were falling victim too soon. I often talked with Steve and Alison, a couple I got to know in South Africa. Steve had been diagnosed around the same time as myself. It didn't end well for them. I watched certain people from my almost daily infusion lab visits vanish. I also connected with a man named Daniel from Romania. He fought hard for two straight years before dying in 2012. These thoughts swallowed me from hour to hour. If they can't make it through this, how can I? I didn't want to die. I was not ready. My friend Damon and his family came to see me a few times in the hospital. He was a Leukemia survivor. Looking at him gave me hope. Even if it was only a glimmer.
I never talked about the days that I awoke with barely enough strength to rise out of bed. Or, the days when I did get up, that it took me 2 hours to take a bath and I spent the rest of the day on the couch sleeping. Simply emptying the dishwasher was a monumental task that took every ounce of ambition I could muster, and even that required a break between racks. Before, I was a capable person who didn't rely on anyone. But now, I had reached a point where I couldn't even button up my shirt some days because the tremors in my hands were so severe. These feelings weighed my brain down and made it heavier, collapsing the once sturdy walls that supported my consciousness. Buried in the rubble beneath, you can find the hints of depression, anxiety, fear and even anger. It was easy to forget that the world didn't stop just because I got sick. I had to keep reminding myself that the world kept moving, even when I had to stop.
It wasn't until one weekend that I spent at my parent's house when I began my long journey back. My Stepdad was driving me back home one day when I began to complain about the amount of drugs I was taking and that it was making me crazy. He said to me "You know, you take all these drugs to fix the things that are wrong with you and to prevent you from getting worse with infection." "Yes, I know." I said, knowing he wasn't finished.
"But there's no drug out there that can make you feel better about being you." He continued. "You have to want it. There's no magic pill you can take to give you strength enough to take a walk down the block. You just have to get up and fucking do it." His words hit me like the sound of thunder shaking my house at midnight. It was words I needed to hear. It was in that moment that I realized how far I had really fallen. It was especially meaningful coming from man who, 30 years prior had broken his neck in a motorcycle accident. A man who survived. A man who, in fact, walked again. A fighter. A fellow soldier who just dared me to do better than him, whether he realized it or not. Was I going to let him down? Well, hell no. It didn't matter that most of my hair had fallen out. It didn't matter that I had lost nearly 60 pounds. And it didn't matter that I barely had the strength to make it up my driveway that day. What mattered, is that I decided to keep trying.
I rehabilitated myself mentally and physically over the next few months. I tried to immerse myself in the every day, trying desperately to find a sense of normal again. I built things around the house. I fixed problems with our home that were put off while I was too sick to deal with them. I went to the races with my Dad who pushed me around all day in a wheelchair because I couldn't walk long distances. It was almost as if my body dispersed energy quotas for each day. And if you went over the amount your body was willing to give you, you paid the price. But I kept pushing anyway. I even returned to work. I never would've thought that returning to work would give me so much hope. But understand, I needed to matter again. I needed a purpose. The world had gotten along without me just fine. It was time for me to adapt to this new world that was seemingly a full year ahead of me. I needed to prove that the world still needed me for something.
By Fall of 2009, treatments and doctor appointments slowed, as my strength began to return day by day at turtle speed. I still couldn't draw or write very well. I also couldn't play guitar. My hands were still very shaky and weak from treatment. The tremors had started to subside, but the unsteadiness and weakness within them remained. My penmanship was sacred to me. I took a lot of pride in the way my writing and art looked on paper. I had to sign ton of patient forms while in treatment. Each one I signed made me feel truly embarrassed to show to anyone. I knew I would someday return to art, writing and even playing my guitars if I was patient, and kept trying.
Before I go further, I need to go back a few years. I married my wife Katie in 2005. We had a tiny wedding. I won't bore you with the details on that, save for one. We knew wanted a really great photographer to capture our day. We didn't care that we were going to spend more on photography than my wife's wedding dress to get it. We wanted an artful depiction of our day and we were willing to pay through the nose to get it. And we did. A few weeks later, we received our proofs, and they were magical. Jamie (our photographer) had done her job. Her photos are still special to me today. Thanks to Jamie, I'd become mesmerized with photography. But finding the time to learn it however, was a different story. Until now.
I knew I still couldn't draw, write, or even dream about playing a Dave Matthews song on my guitar. Crash was a nightmare, and trying mimic Ants Marching was simply a pipe dream. But there was one thing I was sure I could do. I knew I could push a shutter button. What's more, is that I had the time to learn, and even if I didn't, I'd make time for it. This was something I needed to do. My wife bought me a Nikon Camera I still use today that year for Christmas. I experimented. I read. I studied. I traveled to seminars. Along the way I shared my experiences most with her, who still to this day is amazed by the fact that not only did I make use of her gift, but expanded upon it with diligence beyond anything she could've predicted.
In the above photos, from Christmas 2009, you can see me holding it. Fun fact - the photo on the left was taken that same day and is used today as Facebook avatar.
A few years and 20,000 plus photos later, I decided to start a business with it, and Jonathon Rose Design was born. The rest is history. Oh, and in case you were wondering if my drawing ability returned...yes, it did. I even helped illustrate an entire children's book in 2011 that's still sold on Amazon. I can also play the shit out of Ants Marching now.
Last week, my medical port was removed. For those that don't know, it's a device that allows doctors to access you to administer fluids, drugs, etc., without having to poke your arms constantly. It's implanted in your chest, just below the collar bone. It was a part of my body for 6 years. During that time, I often wondered why my doctors chose to keep it in that long. It hadn't been accessed since 2012. Did they fear I'd need it again? Would my cancer come back? Did they know something I didn't? These are the questions that surface in my mind every single day. The questions disguise themselves as little chisels, trying to chip away at my now solid mental foundation. The bricks and mortar of this foundation hide the scars and battle wounds from treatment. The wounds like Osteoporosis, Pre-Diabetes, Graft vs. Host Disease, Scleroderma, fatigue, and cataracts just to name a few.