From Australia- David Rabie: My Story of Hope
Hope is an optimistic expectation of a positive outcome for future events. Hope is more than a mere wish as hope implies a belief and confidence that positive outcomes will be attained.
“Hope is a passion for the possible.” – Søren Kierkegaard
We have all had hope at different times in our lives, some more than others. “ I hope for just a few moments of quiet, I hope for romantic love, simple and kind, I hope for voice truth and treaty, I hope we get children off the internet and back to nature, I hope I make the school’s 1st Rugby team and, more recently, I hope my WM will be managed to the extent that I have the quality of life I so desire”.
I would like to share my Story of Hope with you, my fellow Waldenstrom’s patients.
Some 22 years ago, I survived surgery for esophageal cancer and the following staph infection. In the words of my treating Gastroenterologist, my survival was a miracle considering the size of the tumor and the virulent nature of the cancer. A few days following the surgery when the staph infection took hold, I was placed in an induced coma for 14 days. My parents and daughters were summoned to the hospital by the head of the Intensive Care Unit as my life now hung in a balance. I stared death in the face, and I saw the blinding white light. That event changed my life forever, and I should mention, for the better. I have developed a deep level of humility and a sense of appreciation for every day that I have. I was now able to appreciate the small things life has to offer- all that I had previously taken for granted. I had hope and the belief I would get better and regain my strength. Positive thoughts!
It was this experience that gave me the hope and confidence to believe I could deal with this new challenge, WM.
I began my journey of introspection and healing. I attended seminars and read books by the Dalai Lama and numerous other self-help writers, spending many hours in consultation with therapists. How did this happen to me, I asked myself? I was in my early 50’s, in peak physical condition, and I had always followed a strict diet low in fat, very little if any red meat, and lots of grains, vegetables, and fruit. I was a distance runner and had completed about 40 standard marathons and 11 ultra marathons. What more could I have done to enjoy a healthy life? I soon discovered there were other factors at play here.
I grew up in South Africa, and whenever I was faced with bitter disappointment or adversity, my late Dad would quip “Alles sal reg kom Dawie”. Everything will be fine Davey. I guess even back then he was displaying “Hope and the power of positive thinking”. That simple but very positive maxim has followed me through life.
I was diagnosed with WM 8 years ago at the age of 67 by Professor Judith Trotman at the Concord Hospital in Sydney. Judith is the Head of the Department of Haematology and runs a large clinical drugs trial unit covering blood cancers. She and her team are well-known on the world stage for
their amazing research work. Not only do I have WM, but I also have cryoglobulinemia, myelodysplastic syndrome, and peripheral neuropathy. In cryoglobulinemia, abnormal blood proteins called cryoglobulins clump together at cold temperatures, restricting blood flow and causing damage to skin, muscles, nerves, and organs—especially the kidneys. Over time, the cryoglobulins have caused the minor blood vessels in my feet to become blocked, resulting in 3 lower limb and heel ulcers. Myelodysplastic syndromes are a group of cancers in which immature blood cells in the bone marrow do not mature or become healthy blood cells.
Judith suggested that I should give thought to joining the BGB3111 Drug Trial for Zanubrutinib. My thought process was as long as it took to say OK, let’s do it . I joined the trial 4 weeks later. I have been on Zanubrutinib for 8 years. I was anaemic at diagnosis with a Haemaglobin (Hg) count of 102 grams per litre. My IgM was around 26 grams per litre. I am presently reasonably constant with my Hg count at between 118-126 grams per litre, and IgM of 5 grams per litre. In Judith’s opinion, it’s all about how I feel. More about that later.
I was living in Sydney at that time of diagnosis, and Judith suggested that in order to curtail the cryoglobulins, my wife, Cherie and I should move to Palm Cove in Far North Queensland. We are situated opposite the Great Barrier Reef, which is in the tropics. The winters are warm to hot with no risk from the cryoglobulins. It took me about a year to be able to arrange this, now living for about 7 months of the year up north, and returning to Sydney for the hot summers. As long as I avoid the cold Sydney winters and any travel to cold climates, I no longer have the concerns resulting from any damage the cryoglobulins can cause. Cherie has been incredibly supportive through the entire process of moving up north to a small regional town. She was happy to give up going to art exhibitions, the theatre, the writer’s festival, and Sydney’s wonderful restaurant scene. We do, however, miss our daughters and grandchildren immensely. They typically come visit us for about ten days a year, and of course we spend as much time seeing them all when back in Sydney.
I owe Professor Judith Trotman a deep sense of gratitude. Not only for what she does for me, but for all of us on her trials and under her care. She cares so much, and we are able to experience an optimum level of care. Judith has enabled me to have an enviable lifestyle.
I started feeling far less fatigued with my energy levels returning within a few months of commencing on Zanubrutinib. The move up north necessitated my retirement, although I worked remotely in a part time capacity until the age of 70. I do, however, miss the social interaction with people through the workplace but have no regrets regarding this life change enjoying every moment of my time with Cherie up north and the family in Sydney. My days are full. A typical day starts at about 5am. I cycle on dedicated walking/cycle paths for most of the 2-hour bike ride. This is along the waterfront in part watching the sunrise over the Coral Sea. I stop halfway for a coffee sitting on a bench listening to the sound of the small waves breaking. I lose myself in thought soaking up the moment. Typically, I ride four times, and go to the gym two times per week.
Cherie and I attended a 4-day health retreat during March 2023 covering what we need to be doing to ensure we have the best quality of life as we age. The seminar covered our mental wellbeing, exercise, and diet. I gleaned from the program that I was way offline by focusing on aerobic exercise, and not working at stopping the loss of muscle mass or working on balance. Both are a necessity as we age. I now work with a trainer in a small gym twice a week. Not because I need motivation, but to teach me the correct technique. I am obsessed with achieving the correct technique .We work on rebuilding muscle mass and strength. I love balancing exercises-challenging but rewarding.
Activities that include balance can tap into something called neuroplasticity, which is the ability for neural pathways in our brain to change based on growth and reorganisation. Because we have this neuroplasticity, balance training activates the brain, much like acquiring a new language or learning to play the guitar.
In addition to my exercise regime, I spend a few hours a day in our home office working on business projects that I involve myself in. I read at least three news publications digitally per day, and play three or four games of Sudoku per day. I play an active role in the preparation of our dinners, although Cherie is the main chef.
I do at times feel fatigued. Cherie claims it’s as a result of all the exercise. I don’t necessarily agree with this, as I feel fatigued if I don’t exercise. I feel far better exercising. It makes me feel energised having this feeling of positive energy. I am not ashamed that I sometimes lie down at 11,12 or 1pm for a short while. I may read, daydream, or nap for 20 minutes or so. Following this I normally feel rejuvenated.
In 2021, as a member of the leadership team of WMozzies, I was invited to be a part of the process that BeiGene (the Pharmaceutical company sponsoring Zanubrutinib) was going through in their application to get Zanubrutinib admitted to the Government Subsidised Medical Benefits Scheme. It was felt at Government level that these applications should incorporate a patient’s voice. This was an interesting process to observe and play a small part in. We even on two occasions had the opportunity to address these Government Committees. We were able to pass on the experiences we had by being on the trial. Our voice was heard, and we managed to add an emotional touch to the scientific analyses that were the main thrust of the application. Zanubrutinib was approved and admitted to the Federal Government Subsidised Medical Scheme in July 2022.
I am 75 years old and am happily married. We have two beautiful daughters and three grandkids. Together I have so much joy and pleasure from my small family. I do not fear the future, although I did in my early days following diagnosis. I am now reconciled to the fact I have WM and have
limitations, but have every intention of embracing each and every day. I am living my life to the fullest.
I have lived and will continue so with optimism and hope. For me, they are intertwined.
“Hope is being able to see that there is light despite all of the darkness.” – Desmond Tutu
David Rabie
Sydney, Australia
May 2024
The post From Australia- David Rabie: My Story of Hope appeared first on International Waldenstrom’s Macroglobulinemia Foundation.