Have you ever burnt your tongue? We all have and every time we do, we become consumed with doing all the things we can’t do now because it’s burnt, we make promises to be more careful and taste more new things. Why do we do that? Why does it take losing something to realize how valuable it is? Imagine you lived every day appreciating all the wonderful things you have in your life, our five senses alone are literal wonders of the world. How differently do you think you would live? Would you step carefully out of bed each morning, placing your feet slowly and intentionally on the ground? Would you thank your feet for being there? You would! You’d Wiggle your toes and be grateful they all move before standing up and then you would be thankful for everything that just worked seamlessly to make that happen. Every single day, all of us are gifted with these incredible vessels that carry us through our lives, let us feel all the beautiful emotions and heal us when we’re hurt. How often do you find yourself taking a moment to be grateful for these incredible gifts of life and health? Since my diagnosis, I live every day like I have a burnt tongue, I live in a constant state of gratitude because I know it can be taken away at any moment. I feel emotions more deeply, I taste food more intensely, my days are filled with glorious purpose, never letting a second go unappreciated.
Every single day for me (for all of us) is an opportunity to be grateful that I can get out of bed, that I can look over at rach and tell her how much I love her, that I can walk Riley to school and hug and kiss her and tell both Riley and Sadie I love them. Every single day I wake up and I’m thankful that even though my body is failing, I’m still capable of doing these small things to show my appreciation to the ones I love, including myself. I try to remind myself that as uncomfortable and painful as this might be, it’s still beautiful that I have the capacity to experience these emotions, to feel the pain is a reminder that I have also felt joy, to feel loss is a reminder that I also feel love, so, as hard as all of this is for me, I still need to be grateful that I am here now and that I have the fortune of being able to experience all of it. I am acutely aware that the quality of life that I’m enjoying right now can be taken away in a heartbeat and I wish there was some way I could share that feeling with everyone else because the feeling of living in a state of constant gratitude truly makes life more beautiful. If we could all live in a state of “burnt tongue”, even if it were only for a few minutes each day, just to be mindful of all good things we have in our lives, I think we’d be a lot happier
A few weeks ago I spoke about an opportunity in the states to try a combination of medications that would give me a small chance of increasing my life expectancy. The plan sounded super hopeful and I was elated to have that glimmer of hope because I think that in itself is as healing as any drug. As I did more research and spoke to other oncologists about this plan, I learnt that the risk vs reward of this treatment plan just didn’t add up. I was told that the meds I would be put on are all clinically proven, and they are! But what I wasn’t told was that using them all the same time has never been done, so there was no data behind the decision, and I would in fact be a guinea pig. I learnt that combining such toxic drugs could have dire consequences and potentially end up doing more harm than good. After a lot of consideration and conversations with doctors and family alike, I decided that the risk just wasn’t worth the reward, that the potential for it to work was too small and the likelihood that I’d end up shortening my life was too great. After a lot of hugs and tears, me, Rach and my mom decided to abandon the treatment plan that the doctor in New Jersey offered because it came with a caveat that I didn’t fully understand until recently. Rach and I decided that we’d rather have one hundred days of me feeling good than a thousand days of me in the hospital, ultimately, choosing quality over quantity. Making a decision like that does not come easy, consciously deciding that I’d rather have a shorter but more enjoyable life rather than potentially a longer but certainly more painful life is the hardest thing I’ve ever done but it gives me a million more reasons to spend every waking second being grateful for the life I have. Since the beginning of our relationship, Rachel has been by my side and has tended to me with unfailing love and devotion. Through everything that our almost fifteen year relationship has thrown at us, she has without question been my everything and now she is all of that and more to our two daughters as well. I have always been and will forever be grateful for everything she’s done for me.
I don’t want anyone to think that I’ve lost hope because that could not be further from the truth, it’s just that now, my hope lies in the fact that I’m such an anomaly with this type of cancer that maybe I’ll break the mold and end up living longer than the doctors expect me to. My dad used to tell me I had horseshoes up my ass because of how lucky I am and now I have to hope that I have a few more up there to help me through this. The truth is, we all have horseshoes up our asses, some of us just don’t realize it until it’s too late. I implore everyone, don’t wait until someone dies to promise that you’ll love more, don’t wait until you burn your tongue to try that new dish, life is short and at any moment it can be made that much shorter. Lets wake up and before anything else, make a list of the things you have and why you’re grateful for them or go around the dinner table and practice that gratitude with your loved ones, teach it to your children as you learn it for yourself. Take that opportunity to tell everyone that you love them. I know it’s easier to not have to think about how fragile our lives are but I promise when you get to the end of your life, the one thing you won’t regret is saying “I love you” more often to the people you love. As my dad said “never stop loving” and I don’t intend to.