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Spotlight on Mark Mackenzie:
Why I’m giving back
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Just over two years ago, in April of 2020, I woke up one morning with a soreness in my left side, in my lower ribcage. I'm a mariner and I was 56 at the time. I like working hard and I like riding my bike, sailing, snowshoeing, and hiking. At my age, being sore is not really unusual.
A couple nights earlier, I had been helping some coworkers tie up a fairly big barge, hauling on the heavy, thick tie-up lines. I assumed it was probably that, I must have pulled a muscle. But the pain persisted, and over several weeks it worsened. Upon closer investigation, it turned out to be a plasmacytoma (a fibrous tumour), but the odd thing was, as the oncologist put it, "there's nothing underneath it”.
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By this time, it was November of 2020. As time went on, the pain I was in steadily increased and became more debilitating. By December 2020, the pain was significantly interfering with aspects of my work.
From the initial x-ray, the investigation eliminated the possibilities of lung cancer, and then bone cancer. The oncologist I was initially referred to was relieved that I had no conventional bone cancer tumor markers in my bloodwork, but when my wife, Sylvia, emphasized the amount of crippling bone pain I was experiencing, she ordered a PET scan and additional blood tests. The PET scan revealed that the emptiness underneath the plasmacytoma was a large osteolytic lesion. Yet the biggest, and the most dramatic concern was what the radiologist described as a "plethora of lesions" in my ribs, my thoracic vertebrae, my scapulae and my pelvis. Multiple myeloma was suspected, so bloodwork and a bone marrow biopsy from my pelvis was ordered and provided the confirmed diagnosis of kappa free light chain myeloma in February of 2021.
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The first couple of months were bewildering and frightening. Like most people, I had never heard of multiple myeloma, but the implications were daunting. The rampant dysregulated osteoclasts set in motion by my rogue line of plasma cells had chewed right through my 8th left rib, were boring holes in my spinal column, and I was warned to be careful in stepping off curbs. For somebody like me, an active, outdoorsy guy who has always assumed without much reflection that my body will do anything I ask of it, this was a catastrophe. |
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Sylvia, Ethan, Mark and Callum hiking |
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In February 2021, Sylvia started looking for help and she soon discovered Myeloma Canada. I was freshly diagnosed and we were both scared. The medical system is hard worked. Specialists have to view you as a case, not as a person, and they often don't have much time to really prepare you for the process you are about to undertake. What can be worse is when you start looking at random on the internet and your searches may often lead you to old web pages, often years out of date, with disturbing information that is no longer valid. |
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Mark and daughter Danielle hiking in August 2021
before his stem cell transplant
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Myeloma Canada's website provided Sylvia and I with access to accurate information about the disease, about the processes that were occurring in my body, about its implications, and some of the possibilities for treatment. This was important to me. It may have made no difference in the course of my disease or its treatment, but I felt I needed to understand more about what was happening to me and what was going wrong at a cellular level.
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To try and get a handle on what was happening, I studied the amazing bone remodelling system that normally is at work in our bodies in such a balanced and harmonious way, that how now been disrupted and sent out of control by the myeloma cells.
Most importantly, Sylvia's discovery of Myeloma Canada introduced us to the Myeloma Peer Support Program, which put us in contact with Yolande Paine, who was an incredible mentor to both of us, and ultimately, with her husband Bill, the person who got me involved with the Myeloma Canada Ride.
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Yolande, who had been diagnosed about ten years previously, and is currently in remission, gave us both hope. She taught me what to expect and most importantly, gave me crucial advice about drinking water (lots!), exercise (again, lots, or least as much as you can safely do) and keeping a positive attitude. "You have a few months ahead of you where you can hopefully get yourself in the best shape of your life before your stem cell transplant," she told me. I tried to take this advice to heart. |
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I had an autologous stem cell transplant in early October, 2021. Let's just say there were some rough days. As I understand it, the purpose of the autologous stem cell transplant is to allow a high-dose chemotherapy treatment to hopefully eradicate the corrupted plasma cell line (the myeloma cells) as much as possible, and then reintroduce your own stem cells to ‘rescue’ your bone marrow from the high-dose chemotherapy and re-jump start your own cell production.
Chemotherapy kills cancerous cells, which of course, is what we are after, but unfortunately damages healthy cells as well, like hair follicles and those in the lining of your gastrointestinal system, for example.
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Mark with a bag of stem cells in October 7, 2021 |
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As my blood counts dropped in the week following the transplant, I became weaker and increasingly tired. The first couple of weeks were really tough. |
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Gradually, I bounced back. I tried to get my body moving as soon as possible. I avoided all other contact with people, as I had a weakened immune system, and we were in the midst of the pandemic. I started with a walk around the block, sitting on benches and other objects every few hundred steps, gradually extending this to two blocks, then three, then a kilometre. Six weeks or so after my stem cell transplant, I was strong enough that Sylvia and I could do reasonably good walks every day. I still felt weak, had little stamina, got out of breath absurdly easily, but I could do it. After my platelets came up enough that I could be expected to produce clotting responses in case I fell over, I was cleared to try riding my bike again. It was a humbling experience. I viewed my first few rides as pretty pathetic, but I had to start somewhere, and I steadily got stronger.
I started sitting in on monthly zoom meetings with the Vancouver Myeloma Network (the local support group), where I was introduced to some of the amazing people I got to work with in putting together the Richmond, BC Myeloma Canada Ride. I seemed a good fit. I love biking and I wanted to give something back.
In my particular case of multiple myeloma, I was incredibly lucky. For one, I was relatively young and in reasonably good physical condition. I had been diagnosed fairly early, before I had the vertebrae or long-bone fractures that all too often are the events that lead to a diagnosis of myeloma. My disease responded well to the induction therapy that I was started on in preparation for the autologous stem cell transplant. It appears that the progress of my osteolytic lesions were arrested early on and the counts of my kappa free light chains fell dramatically after a couple of months. The stem cell transplant went well, and I am now in complete remission and back at work. Not everybody with this disease has had as ‘easy’ a time as I have had.
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Mark and Sylvia snowshoeing in January 2022 |
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Mark, Callum, Sylvia and Ethan in January 2022 |
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I feel really fortunate and blessed. Most of all because of the support of my family. I don't know how I would have gotten through this without Sylvia, who was my primary caregiver throughout this process. Then there are our boys, Ethan and Callum, my daughter Danielle, my parents and my brother, John, as well as my friends, coworkers and my employers who have all rallied around me and helped keep me going.
But I also feel incredibly fortunate because I am the recipient of the result of years of hard work of thousands of dedicated people who have conducted research into furthering and bettering the treatment of myeloma. It really means a lot to me to be able to do something concrete to make more research possible. We are not there yet. The fact that it is still incurable does weigh on me, somewhere in the back of my mind, at all times. Multiple myeloma is not currently detectable in my blood, but it is assumed that eventually it will come back. I am hopeful when that day finally comes, the research being done now, and in the near future, will allow treatments that will stop it for good.
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Editor’s Note: We hope you enjoy meeting our 2022 Spotlight Stars and your fellow Myeloma Canada community members. The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community - those living with myeloma, caregivers, healthcare professional - in their words. The views expressed and shared are those of that individual. We recognize that everyone’s journey and experience with myeloma is different.
To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.
If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
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To donate to Myeloma Canada
please visit myeloma.ca or call us toll-free at 1-888-798-5771.
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Si vous préférez recevoir vos communications en français, écrivez-nous à contact@myelome.ca.
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Myeloma Canada's mission: To improve the lives of Canadians impacted by myeloma through awareness-building, educational efforts, advocacy, fostering an empowered myeloma community and support of clinical research so that a cure may be found.
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