Being told you are dying due to an incurable disease really puts how you live your life in to perspective. I’ve always had a passion for life, lists of desires that I constantly crossed off because I never wanted to get old and be sad about all the things I never did, so, from an early age, I made a point of making sure that I was doing those things. Whether it was seeing the Scarborough bluffs or hiking up a volcano in Indonesia, I didn’t want to leave any stone unturned. I took inspiration from my heroes and I took every opportunity to travel to new place, meet new people and lead my life with kindness, helping others whenever I saw an opportunity. So now, although my timeline is rapidly shrinking, I still want to be crossing things off that list and living each day as if it were my last because I don’t think I even have the option to get old and regret the things I never did. So I bought that bike I always wanted, I’m saying the things we should all be saying to the people we love more often, I’m spending my time with friends and people I care about. I’ll be lucky if I have another 5 years of able bodied adventures left in me, and I’ll be damned if I don’t make the best of every second I have. I’m so grateful for every day that I wake up and I’m not in pain from this disease. I don’t mean for these rants to get repetitive or preachy but every day is such a reminder for me to be living my best life and its hard not to take it personally when I see healthy people wasting that opportunity. I run my hand over the scar on my head and think about how many people have asked me if its from an accident, my answer is always “I wish” because the reality is much worse. I would heal from an accident but there’s no coming back from this, as healthy and active as I try to be, it won’t stop the cancer from spreading and eventually killing me. Yet I still make the conscious effort each day to be as healthy and active as I can be, because to do any less would be to waste whatever life I have left in me.
I was scheduled for my last round of chemotherapy and since my last scan, things were looking hopeful but within a few heartbeats, all of that changed. There is no describing how fast the demeanour in a room changes when your doctor says there’s good news and some not so good news. Your mind reels with the possibilities, your eyes well up with tears and your hands start to shake, im surprised I heard anything he said after that but here’s what he told me and Rach as we held hands and squeezed for comfort. The good news was that I wouldn’t be doing any more chemo, the not so good news is because its stopped working, the cancer is smart and figured out how to reproduce, despite pumping my system full of toxic chemicals to try and kill it. I had been mentally preparing to be told that the chemo was still shrinking the cancer and that we would continue with the treatments. I had been mentally preparing to go through another shit round of chemo, feeling exhausted, nauseous and dealing with mouth sores because all of that is still better than what he said next. I got told that it’s no longer working and at this point, trying to stabilize the growth would be considered a win because as of right now there is no know drug that will actually shrink it and put me into remission. To quote my oncologist “trying to find something that will work for you is like trying to hit a moving target.” When I asked how this affects my timeline he shrugged his shoulders and told me that every bit of time that the cancer is stable is more time that we’re buying for me. I’m now on a drug in pill form that may or may not work to stabilize my condition but we won’t know until we do the next scan in a couple months. Its terrifying and heartbreaking that I even have to think about dying right now, it scares the shit out of me that I don’t know what happens next but what scares me even more is that I have to leave the people I love, Whatever comes next, the thought of doing it without them is the worst thing I can imagine. I’m scared that I won’t get to see what kind of people my daughters grow up to be. One of the hardest parts of this for me is that, physically I feel fine and I’m grateful for the fact that I’m not in any pain but it’s hard to comprehend the fact that I can feel so “healthy” but be told I’m dying at the same time. I don’t feel like I’m dying but apparently I am, and it’s happening faster than anyone would want it to. I’m scared that I’m going to wake up one day and feel like I’m dying, Every time I feel a random pain in my body or anything that’s out of the ordinary, I immediately think that things are taking a turn for the worse and its so hard not to get carried away with that thought. I force myself to take some breaths and reassess what’s happening but in the back of my mind, there is always that alarm bell thats just waiting to ring.
The day we prepared for was torn out from under us within a few heartbeats and after long hugs and many tears, Rach and I collected ourselves and reassured one another that we must keep enjoying every second we have together. Barring a medical breakthrough, my daughters will watch me die before they even understand what death is. My wife, family and everyone I love will watch me die and there’s nothing I can do about it. As tragic and heartbreaking as it is, instead of focusing on the things that are out of my control, I focus on what I can control and that is how I’ll live the rest of my life. I can control the steps I take to try to find anything that will extend my life if only by a few more days, so I fly to New York next month to speak to a doctor about some options and now, my hope lies with him. I can control how I face each day and each obstacle set out before me I can control how I fill my days. I constantly remind myself that each moment is a gift and I need to appreciate it, regardless of what’s happening. I’d be lying if I said that I’m not struggling every moment of every day to stay focused on the fact that I’m here now and not get lost in the fact that I’ll probably be gone before either of my daughters turn 5. There isn’t a minute that goes by where I’m not fighting back tears thinking about all the things I won’t get to do. While I am here, the least I can do is try to set an example of how to enjoy life, be kind to others and love unconditionally. I hope that somewhere in their little minds those values stick with them as they grow up without me. I know Rach will show them who I was through her own actions, through the way she teaches them and the examples she sets for them. I write emails to an account for my girls that they’ll read one day when I’m gone and I can only hope it brings them some comfort as I hope they read these blogs and smile as they come to understand more about who I am and what I did with my life. All of these posts have been written through tear soaked eyes, they’ve all been written as I pass through the entire spectrum of emotions. They’ve all been written as I consider my life, how amazing it’s been so far and as I think about the rest of my life and how much of it I won’t get to experience. How many things I still want to do that I won’t get to cross off my list. It’s impossible to go through my day without feeling the remorse of knowing that I won’t be here long enough to do a million things that any human would want to do with their children or loved ones. Rach and I sat on the dock today and held hands and as I appreciated the softness of her hand in mine I also fought to stay in the moment and not cry about the fact that I want to be doing this with her when I’m 90. We saw a boat pass by towing some kids in a tube and again I forced myself to stay present and not cry about the fact that I probably won’t get to do that with my kids. We hugged and cried together afterwards, understanding the importance of letting ourselves feel and express those emotions to each other. I desperately try to extend every second that I have by being as present as possible. The moments that I spend with Riley or Rachel, regardless of what we’re doing, I’m studying her face and listening to her voice like its the last time I’ll ever hear or see it. I do all of this while simultaneously trying to silence the voice in my head that constantly reminds me of my impending doom. The quieter I make that voice, the longer each second lasts, the more in the moment I can be, the longer each moment lasts. It’s like trying to meditate all the time, it’s exhausting and I need to catch my breath but as long as I remember to breathe, I can be present in that moment and learn how to slow down time.