The art of living, dying, and slowing down time

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.

15 thoughts on “The art of living, dying, and slowing down time

  1. Heather Kleinberg says:

    I believe I may have met you once, perhaps twice.
    Point is that I feel I know you via your writing alone and the relationship we have is totally one sided, me and my thoughts reading and absorbing what you write.
    I am happy to know you through this medium as you have given me the opportunity to reflect on the importance of love and living life to the fullest, hope, strength, faith.
    You should be aware of the impact your voice brings to others, me being one.
    I wish you peace.

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    1. theywentthere says:

      Thank you so much for writing to me and letting me know that not only are you reading my posts but you’re moved by them. It really means a lot to me and inspires me to keep writing.

      Like

    2. Stacey says:

      You’re a true hero in everyone’s eyes. I pray for your family every single day. You attitude is going to go a long way. I believe in miracles and I pray you’re the one person that gets one.

      Like

  2. Ruthy shvalbe says:

    No words. I have no words. Just feelings. The way your writing makes me feel, it pulls me right in, I am in your world, the writing feels holy and pure. The pure and tender nature of it makes me feel a full spectrum of emotions along side your experiences and reality.
    I can’t write how much this sharing means to me, and how much love I have for you guys. Always in my thoughts 🤍

    Like

    1. theywentthere says:

      Thank you so much. It really means a lot to know that friends and people I’ve never met are reading, being moved by and following along with my journey as I experience it. Thank you for sharing. Sending all the love to you and hope we can see you soon.

      Like

  3. phillrrr1 says:

    Lorne
    Danielle and I have been following your reflections with hope for you and your family and admiration for how you are so honestly facing your challenges. Your ferocious appetite for life and your love and kindness for all, are inspiring to us and to everyone else, we are sure.
    Thank you for sharing so candidly how you are living and valuing every moment. By your example, you are helping us to do the same.
    Our thoughts and prayers are with you, Rachel and your girls.
    Love
    Danielle and Phil Richardson

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  4. Cheryl says:

    Lorne – your writing is incredible. The kind of human you are is incredible. You offer strength and wisdom to those who don’t have it. You are remarkable. It’s the quality of a life lived that count the most and you clearly have achieved so much in your life by the example you set, the way you conduct yourself and the intimacy you share. Praying for you and Rachel daily

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  5. Jane says:

    I would be lying if I said I am not COMPLETELY moved by your honest account of daily life – so much so, that you have given me a compass with which to guide my own days – what matters, what doesn’t. The lens which you must view life from now, so devastating and raw, has somehow been a weird inspiration, begging me to look closely at all the things I have put off, neglected, or simply never explored. You are such a beautiful young person, and my heart ❤️ aches when I think of the daily challenges for you all. Although it may sound trite, please know that you’re all in my thoughts, prayers and I’m putting out into this universe, that by some grace of God, you’re given many many more sweet years of love and life. Xox Jane

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    1. theywentthere says:

      Thank you so much for reading and being inspired by what I’m putting out there. It means more than you can imagine to know that what I’m going through is inspiring people to assess their own lives and make changes for the better. Truly, it’s more than I ever Cohen have hoped for. when I started writing these blogs about my condition. It was as a therapy for myself by myself but it has so quickly evolved in to a therapy for me by the people who have read and responded to it.

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  6. Sheila Engel Cohen says:

    Your life will be an inspiration for your daughters. Everything you feel and write is so profound and important for them to know about you when you are no longer together. I am so moved by the true love and selflessness that you are. If there are miracles I wish one for you and your family.

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  7. Sergio says:

    I wish it was me writing this blog and you reading it. I wish it was me that got cancer. I love you with all my heart Lorne.

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  8. Sam Kessler says:

    Lorne your writing is so beautiful! You are the bravest person I know! Your such a beautiful person inside and out! I’m so sorry your going through this, and I know that comment must seem hallow coming from everyone, I’m not religious at all but I’ve honestly been praying that somehow you get through this! Your one of the best person I know! I just wanted you to know I’m here for you and Rach for anything! ❤️❤️❤️

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  9. Natalie Rashkovan says:

    I say ‘what they said’ to all the posts here. I vacillate between tears and smiles along with your thoughts and analogies. You are strength, you are life, you are a messenger for anyone who will listen and learn, I wonder if you have considered videotaping yourself with messages for Rach and for your girls and perhaps for others in your families. Video your advice to the girls on their first day of school, on their first day of camp, on their first date, for prom, for a wedding…for all the firsts! I’m not sure if it’s a blessing to have this period of time before you, but all these unknowns you mention – you can kind of be there for them and clearly given your talent for writing and sharing, your advice and emotions will serve them well!

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    1. theywentthere says:

      Wow that was beautifully written. Thank you for saying all that. I’m in tears. IT’s serendipitous that you mention video taping myself because I’m the last months of my dads life. I interviewed him about his life and made a movie that commemorates him and rach was just talking about Doing the same thing with me. If you want You can watch the video, it’s linked in the happiest years of my life post.

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