Owning Up

Posted by on Jun 3, 2019 in Blog, Featured | 15 comments

Owning Up

I’m feeling the need to own up to something. This has been a difficult period in my life and for the most part I’ve kept quiet about it. A few people I have shared this with but not many. I’m not sure why I’ve kept quiet but maybe I’ve been protecting myself. I’ve used this blog as a way to focus my attention on other things and that’s helped me remain positive. But I guess I’m ready now to open up.

Almost three years ago, I was diagnosed with Multiple Myeloma, which is cancer of the bone marrow.  I quickly got accepted into a clinical trial and started chemotherapy. Fortunately, doctors caught the cancer early and I went into remission two years ago.  But the chemo took its toll. I had severe side effects – swelling and then neuropathy in my hands and feet, loss of my ability to taste food, feeling disoriented, and other things. Some of these side effects are with me today, others have diminished.  I have my blood tested every month. I go to my oncologist every three months, and hope the cancer remains in remission. It’s an incurable cancer, so at some point it’s likely to return. But for now, that’s all I can do.

I’ve also struggled with Congestive Heart Failure.  I have a strong heart but I have a thick muscle surrounding it, which is something I’ve known about and lived with for many years. As I’ve aged, my heart has become stiff and has a tendency to retain fluids. This makes hiking, and sometimes even walking, difficult because I lose my breath after just a few steps. My cardiologist has put me on a diuretic to control the build-up of fluids.  Thus far, that has worked. I guess I’d rather be peeing all of the time than struggling to walk.

Lastly, I’ve also been diagnosed with severe sleep apnea, which is dangerous since testing shows I stop breathing 33 times an hour when I’m asleep. So I recently got fitted for a breathing device to wear at night. I sat in a room with a couple of old women who were being fitted as well. They were probably my own age but I thought of them as my father’s age. Weird how that happens! We all had to try on our masks and get instructions on how to use them properly. These are huge, plastic masks, connected to a machine that blows air into your mouth and nose.  I looked like Anthony Hopkins in Silence of the Lambs. We were all embarrassed about how we looked wearing these monstrosities. I just hope my grandkids don’t come in to wake me up some morning. They’d be scared to death!

Just to be clear, I’m not feeling sorry for myself. I’m managing all of my health issues now and I’m doing fine. But I miss hiking in the mountains. I miss running after my grandsons while we play tag. And I miss being more alert and less in a fog. Some of this is simply my resistance to getting old and acknowledging my new limitations.  I still see myself as a vibrant, young, athletic man.  Occasionally I am shocked when I stare at myself in the mirror. But generally, deep down, I still feel young and alive. This has probably been my most important anchor during these difficult few years.

15 Comments

  1. Many things improve with age, John.

    – Despite the label fading, the wine often builds body, flavour and bouquet.
    – I am a strong believer that despite the smell, the more ‘mature’ the cheese the better the flavour.
    – And as for that mirror, John, I don’t know a single person that doesn’t expect to see version 1.0 of the reflection rather than the current version 5.XX.

    The final thing that gets better with the passing of time is friendship. I am pleased you chose to ‘own-up’ to all your friends. If positive vibes and best wishes were a tradable currency, you’d be a very wealthy man today.

  2. John…I still see that vibrant, young, athletic (well maybe trying to be athletic) man who is young and alive. I guess that is what is so cool about growing old with good friends!

  3. So brave! in much tougher challenges than what’s needed at an earlier age! thank you for the post; it’s inspiring and much appreciated.

  4. It has been a gift to walk by your side for much of this John. I’ve witnessed so much grit, courage, and quiet perseverance. I relish your good periods and remain hopeful about your health. A shout out to Farn, who has been an amazing partner through all of this!

  5. You’ll never be younger than you are this very moment. No…this moment. No, Ok…now this moment. You’ve got a lot to live for and you’re doing great just taking it day by day.

  6. John, thanks for being so vulnerable and transparent. I still remember watching you do a unique team building event for a client. In my mind you still are my hero

  7. Started diuretics late last fall. I haven’t noticed increased frequency once hydration reached new level. Same fluid in – same amount out – just a case of less retained. Good that you have great memories from past adventures. Now make some more……

  8. By sharing your story you are helping others realize they aren’t alone. You never know who has went through the same and could actually help you. I also understand when people don’t want to share health issues because it’s hard to talk about it over and over to different people. There is no right or wrong. Aging brings challenges, but you do a great job facing those challenges one step at a time. It teaches us to do the same!

  9. Thanks again for your candor and profound humanity John. A great big hug for you.

  10. Having you and Farn come into my life over the last several years has been such a joy. I know how private you are and so I have often hesitate to pry about your health. You have been so strong. Never a word of complaint. Well, maybe to Farn! What you did not mention is that around the same time that you were diagnosed, you started something new in your life. Doing pastels. And they are so beautiful. Instead of letting your illness get you down, you responded by creating wonderful art. Once again, I know how private you are so I hope I am not letting the cat out of the bag. But I am sure that the art has helped sustain you. That is what art does!

  11. Hello John… Thank you for your frank writing about your experience of ageing and illness. In a world that deifies youth and beauty we need to hear more diverse voices. And some sense of what’s real.

    In 2011 my mum was diagnosed with a rare blood disorder – a kind of leukemia. It was a difficult diagnosis, touch and go at the time. I remember one night, she said to me: I’m not ready to go. So I said: don’t go then. She didn’t. She always lived a full life and spent the last seven years doing all she’d ever done. Bowling, bridge, pitch-and-putt, bingo, cooking, gardening, going on trips with her active retirement group and alone… She began to decline last year and died suddenly last September.

    In all of that time, she never spoke about her illness, her fears, her hopes or regrets. She’d been a widow for 33 years and had learned to keep everything inside. I wish she had opened up. I wish she could have spoken about how it was for her. She never did. Looking back now, I think she was preparing to leave; I think she knew what was happening in her body even when doctors didn’t. And when it was time, I think she was ready.

    But she kept all of this inside. I think it is a gift to be really frank about our experience. It helps everyone get past the usual bullshit.

    So, keep giving the gift of your voice, John. Keep living life to the fullest. And be well.

  12. John,
    Early on, you did tell me about your illness.
    Since then, as you pop into my mind, I send you loving and good thoughts, I continue to do this.
    I found that all things in life come to us to learn from. This is what I hear from your words, all the learning.
    You and Farn invited me to your home for a few days some years ago when I was travelling. I have always been grateful for this meeting and refer to both of you as special people, as you are.
    As for me I am living in Tokyo. I am pleased to hear you are focused upon your art.. I go out in Tokyo, sketching,/ water colour painting once a week and run workshop programs, The Fabric of Awareness.
    Living in Japan is tvery different in culture, custom and life, sometimes confronting, challenging yet all being of Joy that I have this opportunity. I send you Joy in all you do. Keep well and enjoy each day. In appreciation of the gifts you give. Many thanks

  13. John–I’m wishing you continued strength and perseverance–and the best health you can achieve. You always find a way to impart an important lesson, and this situation is no different. Your grace under these circumstances will stick with me. Thank you.

  14. John – You are an awesome person!!! And with so much still left to give in so many ways. Continue to find alternatives to things you have done before and keep up the “new” things like the beautiful pastels you have been painting. For every “bad” continue to challenge yourself to find another “good”. Give more hugs to your grandsons rather than joining in their chase. Enjoy the time you are “forced” to be still. Reflect on the incredible medical you have been receiving. What a gift! You’ve got this, my friend!

  15. Dear John,
    I also still think of you as a vibrant lively guy! We all have to put up with physical limitations as we age, but what is important is to keep our spirits young at any cost and we will fare much better.

Leave a Reply

Your email address will not be published. Required fields are marked *