Spotlight on Dominic Jean:

Honouring Aldo’s legacy

November 2023

Me in 2018

My name is Dominic Jean and my experience with multiple myeloma is a bit different than most of the other experiences you may have read about in previous Spotlight stories.

My life was turned upside down 21 years ago, back in 2002, by this unforgiving blood cancer. The impact myeloma had on me as a life partner and caregiver was profound, emotionally and physically. The toll it took on my loved one was beyond compare.

Together, we vowed to do what we could to go on with life,

to continue to do the things we loved for as long as we could,

and above all, to make myeloma matter.

While you may not know me, you may have heard of my late partner. His name was Aldo Del Col and he was the co-founder of Myeloma Canada.

Four years ago, I, along with his family, friends, and the Canadian and international myeloma communities, lost Aldo to this terrible disease.

I’ve decided to share our story with you this month for a few reasons. This coming February, Aldo would have been 70.

Aldo receiving the Governor General Award, 2018

One of our last trips, Feb 2019

Aldo lived with myeloma for 17 years. I cannot believe that this past August (August 6^th to be exact) marked 4 years since Aldo's passing. I am, of course, still very connected to Myeloma Canada and with Aldo’s milestone birthday on my mind, I thought that sponsoring the organization’s annual Giving Tuesday/matched giving program would be the perfect way to honour him, all he did for the myeloma community in Canada and abroad, and keep his incredible legacy alive.

Way back when Aldo was diagnosed, treatment options were extremely limited and there was no Canadian organization to turn to for information or support. In his immortal words,

“I vividly recall that day in 2002 when I was told that I had an incurable disease I had never heard of and that I had three to five years to live. I remember being overwhelmed by feelings of fear, panic, dread, terror but above all a feeling of aloneness.”

With no support group in Montreal where we lived, Aldo went to the States. Serendipitously, there he met another Montrealer who had also been newly diagnosed – John Lemieux – and together they created the first Montreal myeloma support group.

Aldo was starved for Canadian myeloma information and was really frustrated and angered by the fact that there was nowhere to find it. He wanted to do so many things, including creating awareness for myeloma, its signs and symptoms, and to spread the word to trust how you feel because "no one knows your body better than you do”.

In 2005, three years after his diagnosis, Aldo and John co-founded Myeloma Canada.

As some of you may know, Aldo was a man of strong conviction and drive!

When he set his mind to something, he never gave up. I think that played a role in his having survived myeloma for as long as he did, along of course with his commitment to do what he could to ‘stay ahead of the disease’. This he did, in great part, by participating in as many clinical trials as he could.

One of Aldo’s (many) mantras was that no one should ever feel alone in their journey the way he initially did.

2012 conference in Winnipeg

Aldo was determined that every Canadian affected by myeloma would have somewhere safe and welcoming to turn for the information, resources, and programs they needed to be informed, empowered, supported, and heard.

Looking dashing crossing the Panama Canal in 2009

There are so many stories to share: mine as a cancer survivor as well as a life partner of, and caregiver to, someone with myeloma; Aldo’s as someone who lived and fought myeloma for nearly 2 decades; Aldo’s as the co-founder of Myeloma Canada; and ours, as two people impacted by this very difficult disease determined not to let it get the best of either one of us….which of course was not easy.

This isn’t the forum in which to share all the angles and all our stories, but I’ll try to provide you with some insights into a bit of each.

Me being a cancer patient from 2013 on added another layer; I was Aldo’s caregiver and for a while, he was mine. At the beginning Aldo could fill that role but not towards the end. Thankfully, when Aldo took a turn, I was well and didn’t need caregiving.

Aldo was initially diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) which, 6 months later, turned into a myeloma diagnosis. Aldo actually always doubted that MGUS diagnosis because he was already experiencing symptoms of myeloma.

Even though Aldo’s first stem cell transplant wasn’t very effective, he still survived for 17 years! This was thanks to all the advancements in research, clinical trials and new drugs that were developed since that day he was diagnosed in 2002. Back then, his doctor had even told him that because there weren’t many treatment options, people weren’t living long enough for them to have data on his future!

Enjoying life, Oct 2014

Aldo was a true tour-de-force. It was so important to him, and to me, that the cancer never slow us down or get in the way of life passions. We were so fortunate to be able to travel and do the things we love for as long as we could, and we never took that privilege for granted.

Aldo in his much younger days, with his mother. Traveling was always his passion.

Family was very important to Aldo. Pictured here with his dear aunt in 2014.

Nothing could slow Aldo down, not even myeloma! Here we are in the Antarctic in 2014.

When push comes to shove, being a caregiver is bloody tough.

You don’t necessarily notice it but you end up piling on a lot of stress because there’s so little you can control, and Aldo knew this.

I didn’t fully realize just how stressed I was in the moment, but rather, in retrospect. Having said that, I’d take Aldo and that stress back right away if I could!

The myeloma was progressing. Aldo’s humerus broke when he rolled over in his sleep, 2017

One month before Aldo passed, July 2019 – his spirit never faltered!

When it came to his ‘role as a patient’, Aldo had some very strong sentiments which he incorporated into some of the founding principles for Myeloma Canada:

Aldo was a big believer in, and advocate for, “taking charge of your own file”. He was passionate that patients needed, and deserved, to be informed and active in their own care. If ever you had the opportunity to hear Aldo speak, you would have also heard him say “No one knows your body better than you do.” at every possible opportunity.

Aldo was adamant that clinical research includes the patient voice and looks at “the softer aspects” of trials; that they consider not just the pure clinical drug effects. He pushed for trials to understand the patient, their history and environment and how these could either trigger or help how someone responds to treatment.

Aldo felt this person-centric approach was severely lacking

from all the studies being done and he wanted to change that. Anyone who knew Aldo also knew one of his favourite mantras, “If you’re not at the table, you’re on the menu”.

And, as I mentioned earlier, Aldo

was a huge believer in participating in clinical trials and encouraging others to do the same. Whether you were part of the control group with a placebo, or given the drug in trial, Aldo’s commitment to clinical trials was strong until the very end.

Aldo with Dr Robert Kyle, internationally renowned and celebrated pioneer in myeloma, 2013.

Aldo and Martine Elias, Myeloma Canada’s Executive Director at the Vancouver Family Medicine Forum, 2018.

Through his determination and grit, Aldo created an organization that has truly revolutionized the Canadian myeloma landscape.

I see no better way to pay tribute to Aldo’s legacy than to continue supporting his work and his passion.

That’s why I’m doing this matched giving program and matching all gifts, up to $100,000, in honour of Aldo and every Canadian touched by myeloma…past, present, and future.

Making the most of every day, 2014

Together, we can move closer to a cure, and help people with myeloma live longer and better, so that we, their loved ones, get to have them around for as long as possible.

Be well,

Dominic

Editor’s note:

To learn more about Dominic’s 2X IMPACT = 2X HOPE gift matching program, and how you can help turn $100,00 into $200,000, please click here.

For information on legacy giving, or how to bequeath a donation to Myeloma Canada in a will, please click here.

To find a local support group in your area, or for information on how to start one, click here or contact Michelle Oana, Myeloma Canada’s Director of Development and Community Relations at moana@myeloma.ca.

We hope you enjoy meeting our 2023 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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please visit myeloma.ca or call us toll-free at 1-888-798-5771.

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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.