Spotlight on Danny Wade:

Living life to its fullest!

April 2023

Danny Wade, 2022

Hello to all fellow myeloma warriors!

Many of you already know me, but for those who don’t, my name is Danny Wade. I was diagnosed with multiple myeloma at the young age of 42.

April 26 will mark 7 years since I first heard the words ‘multiple myeloma’, and the shock that came with it!

While it will soon be 7 years since my diagnosis, it still feels like it was yesterday. Fortunately, with time, the first anxieties and fears I felt did gradually fade.

Learning you have an incurable cancer and that your life expectancy is between 5 and 7 years is enough to freak anyone out! No one is ready to face this new reality overnight; nothing can prepare you for that.

After the initial shock, you shift gears into survival mode and do your best to continue on, not necessarily knowing where you’re going or what you’ll do. You want to believe in your chances, and have hope…

Little by little, and after repeated hospital visits, we slowly get to know the surroundings and our medical team. We become familiar with drug names (some which are unpronounceable), protocols, and various medical terms…so much so that we feel we’re nearly becoming doctors ourselves!

We also end up mourning our old selves. In my case, it meant going from a Marketing Team Lead to a full-time myeloma patient. For many of us, this transition can be a difficult one to accept. Surprisingly, with time, as time does change us, we build a new identity for ourselves and find a new purpose. At least, that has been my experience: “I am a myeloma patient and I am proud to be fighting this cursed disease!”.

I am embracing my new identity. It gives me with the strength to go to the hospital like you go to the office. It even crossed my mind to create a new business card for myself. Looking back, I probably should have, it would have been funny and would definitely have sparked some conversations!

And, then there’s the famous “patient journey”: blood tests, urine tests, biopsies, pills, tests of all kinds, which led me to an autologous stem cell transplant.

I had no idea what this was, and even less what it would do to me. I must admit that, for me, it was quite difficult, but I got through it. Later, when I was informed of my biopsy results, I was told I had two chromosomal abnormalities: gain 1q and deletion 1p. “Great, what’s the deal with this now?” is all I could think.

In emergency, July, 2016

It felt like I was in a minefield set up by the enemy and that the only option of getting out was to have this thing they called an allogeneic stem cell transplant. Okay, I knew what a transplant was but I had no idea what an allogeneic transplant was. I added more credits to my patient training, researched the procedure and what it involved, without knowing what it could or could not do for me.

My new Broviac central venous line, Sept 2016

Since I am an only child, my medical team had to go international to find a compatible donor. Here we go again, another mission!

The allogeneic stem cell transplant was easier on my body than the autologous stem cell transplant. However, to fight against Graft versus Host Disease (GvHD), I had to go through 3 different types of anti-rejection drugs before finding the one that worked for me.

And, to add to my ‘cool factor’, since my donor’s blood type was different than mine, I went from being blood type O+ to B+. It’s mind-boggling to me that I’m now what they call, “a chimera”. It feels like it should be something out of a sci-fi movie, but it was actually a pretty simple transition that didn’t cause me any problems.

After recovering from all this, my transplant surgeon, Dr Jean Roy, told me about a clinical trial developed at the Hôpital Maisonneuve-Rosemont where I was, and still am being treated and monitored. I met all of the trial’s inclusion and exclusion criteria, and before he even had a chance to finish explaining the details of the clinical trial, I said yes!

I chose to participate, not because there was no more hope for me, or that I thought I would receive better or more advanced treatment, but because, for me, it meant I could help and give back to others.

At this point in my life, I was being offered the opportunity to be part of something bigger than just me. In a way, I was being given the chance to smooth away some of the fear and pain my family, friends, and I had endured over the past months and give this experience a deeper meaning. And in a beautiful way too!

For an entire year, I received a dose of Bortezomib (Velcade) every two weeks. It wasn’t overly difficult, but over time, it did become exhausting. I ended up really looking forward to that final dose, but what a sense of pride I felt at the end! This happiness still lives within me today.

Myeloma Canada Scientific Roundtable with myeloma warriors and friends, Tania Zigomanis, Susan McLean and Manon Veilleux, Nov 2022

Now, here I am, 7 years later, still very much alive.

I remember when I first heard my prognosis. I feared, with good reason, that I wouldn’t be around to see my daughter graduate from high school, that I wouldn’t live to see my son get his driver's license, or my youngest daughter finish elementary school. I was frightened I wouldn’t live to see the age of 50.

Me and my eldest daughter, Kelly Ann, July, 2022

My son James Elliot and my daughter Amy Lee, Oct 2022

Well, I attended my oldest daughter's high school graduation, my 15-year old son is impatiently waiting for his 16th birthday so he can get his permit and his first car, and my youngest is now in her first year of high school!

So thank you. Yes, thank you life!

I want to thank all the wonderful human beings who choose to devote their lives to taking care of us and our lives, to always going further, to researching and developing new technologies and molecules. Your talent, passion, and dedication saved my life. It has nothing to do with luck, but rather your expertise and perseverance. I am forever grateful to you.

I also have tremendous gratitude and admiration for my donor. My mother gave me life, but it is because of a perfect stranger that I am still alive.

I have the privilege of now knowing who my donor is and we keep in touch regularly. So, thank you Dirk! A profound humanity and humility lives within you, and I can’t wait until we finally get to meet. It will definitely be another beautiful story to share…

And now, I do my utmost to live my life to its fullest. I try my best to be a good father, to be as present as possible for my children, my girlfriend (my angel) and her son, as well as for my friends who are, and have always been, there to support me, like Sylvain, Patrick, and Eric, just to name a few.

A quiet moment - Myeloma Canada Support Group Leaders' Summit - Halifax, Nov 2022

One day, as I was lying in my hospital bed, I made a promise to myself to be there for patients and caregivers so that no one would feel alone and helpless following a myeloma diagnosis.

I try to stay as active as possible by participating in various activities and conferences, and by being involved in the Myeloma South Shore Support Group that I co-founded with Jean-François Couture almost 4 years ago, and that I now co-lead with Lyzane Bissonnette. I strive to be a good listener, provide accurate and reliable information and the right resources to help meet the various needs of our community members.

Myeloma South Shore Support Group, 2022

I see all the good this brings, how useful and positive it is on a daily basis. It’s what fills me with the energy and motivation I need to continue doing what I do.

My next goal is get the words and disease ‘multiple myeloma’ known outside of our own circle and community. The objective is not only for people to be more aware, better informed and consult their doctor sooner for earlier diagnosis, but to also attract the attention of the media and our politicians. This is where part of the solution lies: raising awareness for myeloma so that the disease is better known will hopefully help loosen the purse strings of funders, create more interest in subsidizing myeloma research in our universities and hospitals, and obtain the necessary resources to develop and support more clinical trials.

Filming a video for Myeloma Canada, Oct, 2018

There will be a before and an after multiple myeloma. And every day brings us closer!

Danny

Congratulations, Danny on being the winner of the 2022 Myeloma Canada Notable Volunteer Award (see the section "What's new at Myeloma Canada"), and on the publication of his first book, Myélome Multiple: l'ultime épreuve (available in French).

Editor’s note: 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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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.