Lately I’ve been feeling the pressure of time in a more acute way than usual. I had some scans come back and things didn’t look great, my oncologist wasn’t happy with the growth he saw and decided to change my treatment again. This is the third in a series of medicines that have all worked for a short amount of time before the cancer outsmarted them. I’m doing an infusion of immunotherapy now every three weeks which in itself isn’t so bad. It’s the journey to the hospital, seeing all the sick people (most of whom are much much older than me) the anxiety and the waiting that all compound how real and fucked up my situation is. When I was just taking a pill at home, it was easy to forget, but now it’s shoved in my face every couple weeks. I’m grateful it won’t make my hair fall out like chemo did, I’m happy I can look in the mirror and still see myself.
I feel like I’ve waited my whole life to get to this part where I have a home, a wife and a family to take care of. I always looked forward to silly things like decorating my house during the holidays, having nice green grass in the summer, waving to our neighbours and being part of a community and now that im finally here, it’s being taken from me. We went to the holiday market at Riley’s school the other night and it was the first time since we moved into the neighbourhood that we really got to see something like this. The community the camaraderie and friendships of children and parents alike made me sad as we walked through the halls. We watched Riley run wide eyed from booth to booth oohing and aahing at all the new and exciting things. We saw her teachers and friends from class, she was having the time of her life and I was wondering if I would be here next year. Then later that week I was on the phone saying goodnight to my mum and we had a conversation that was eerily similar to one that me and my dad had before he went to a cancer clinic in Germany. We spoke about how he was feeling good and how that was a good sign and that he was on the path to a new clinic and treatment and things were looking up but they weren’t and then they got worse and then he died. And when I got off the phone with my mum all I could think about was how similar those two conversations were except now im on the other side of it. My mom is so optimistic about the clinic in Houston and the immunotherapy and how im feeling good (which I am!! And in grateful for that) but none of it makes a difference or will change the fact that I’m gonna leave her with one less child, my wife without a husband and my daughters without a dad. There won’t be some miracle that saves me, why would there be? My journey is coming to an end and all I can think about is when.
I’m a nerd at heart, I love lord of the rings and all things fantasy, and like anyone who reads these stories, I always imagined myself as the hero finding a way to overcome the odds and saving themselves and their friends when all hope seemed lost. There’s a line from the lord of the rings film when Frodo says “I wish the ring had never come to me. I wish none of this had happened” to which Gandalf replies “so do all who live to see such times but that is not for them to decide, all we have to decide is what to do with the time that is given to us”. and I’m trying to do the best I can with the time that’s been given to me, I really am, but I feel robbed, there’s so much living left to do and I don’t have the time to do it. I’ve been reading a series of books since i was a teenager, the hero in this book has taught me so much and helped me through so much, I always felt so connected to his ideologies, beliefs and choices and I’d go as far as to say that he’s been like a bible for me. I often go back and flip through the pages to find a quote I liked and very often liken the characters in the book to people in my life. The author is still publishing new books every six or eight months and I can’t bring myself finish the most recent one because if I do then it might be the last one I ever read and that epiphany really hurt me. I thought I would get to finish this adventure with him. I guess I thought a lot of things that aren’t going to happen the way I envisioned. I imagined I would be a hero to my kids by teaching them right from wrong, fixing broken things, lifting them up and carrying them up a mountain but now I see thats not the kind of hero I will be. I’ll be the kind that leaves a legacy of doing the right thing, I’ll be leaving behind the tools for them to be able to fix their own broken things and lifting them up through the stories people tell about me. I’ll be the kind that they won’t get to see fail because I won’t be here for them.
From the beginning, When Rach and I would speak about my situation I would use language like “I’m the one leaving you” and she corrected me recently saying you’re not “leaving” you’re being “taken” and as much as I knew that, it really hurt to hear it out loud and accept that that’s what’s happening. Leaving would be a choice and this is anything but that. And that’s really it isn’t it, choices. That’s what makes life beautiful, that we get to wake up every day and choose whether or not to smile at the people we walk past or frown at them. Big or small, the choices we make affect ourselves and the people around us. I have a quote taped up next to my bed that goes like this “When people talk about traveling to the past, they worry about radically changing the present by doing something small, but barely anyone in the present thinks that they can radically change the future by doing something small now.” I like it because it reminds me that even the smallest choices can make the biggest difference whether it’s in our own lives or someone else’s. And before I get too preachy, I’ll finish my letter by saying the choice that you all make to read these letters and reach out to me and show me your love and support makes a massive difference in my life and I’m grateful to every one of you for being here for me.