Dear community...

August 2024

Martine Elias, Chief Executive Officer

Dear myeloma community,


Today, I want to share something deeply personal with all of you.



It’s important to me that you understand how a terrifying health event has impacted me and given me a glimpse into what you experience when you receive a myeloma diagnosis and live with this disease every day—sometimes feeling okay, and other times being utterly overwhelmed.

Exactly one year ago on July 30, 2023, it was a beautiful sunny Sunday evening. I was preparing dinner when I felt a growing pain in my back between my shoulders; my heart rate was all over the place and going through the roof. Within five minutes, I broke into a cold sweat, and my breathing became more and more laboured. I looked at my husband and said to him, “We need to go to the hospital now.”

I knew right away I was having a heart attack. 

I know this because I have a family history of heart problems: my father passed away following his third heart attack, his brother passed away from a heart attack as well, and so did my grandmother and grandfather, and that’s only on my dad’s side. On my mom’s side, there are also significant heart problems.


Because I had passed the age of my dad’s last heart attack, my blood pressure was well managed, my good and bad cholesterol were normal, and I was physically active, I had convinced myself that my heart was in good shape and that I had beaten the odds.

I live in a small town, and the local hospital — also a small hospital — is about 12km away. The drive there felt like an eternity, even though my husband was driving as fast as he could. As we were getting closer to the hospital, I started to lose feeling in my fingers and feet. After walking into the ER area, I was rushed through very quickly and hooked up to all sorts of wires. It was quickly determined by the medical staff that I had had a heart attack and needed to be rushed to another, more sophisticated hospital that offers specialized cardiac care more than 75km away.


So off I went in an ambulance to the hospital in Sherbrooke, QC. Again, a ride that felt like an eternity, even though we were flying, sirens blaring, on the highway.

Once at the hospital, I was welcomed by the healthcare staff at the elevator, rolled into the operating room, and asked to consent to having either an angioplasty or surgery. With angioplasty there was a 50% chance of efficacy to put a stent in my artery which was severely blocked. Projected efficacy of surgery was even worse given the severity of my condition. The outcome looked very grim. I opted for angioplasty and the stent.

Now, why am I sharing these details with you? As an advocate expert, and now a patient, I had a choice to make: 1) Call an ambulance to my house and wait for it to come, not knowing when it would come and how fast my symptoms would escalate. Having read about the lack of ambulance staffing in my region and the delays in reaching people in need, I just did not want to take that chance; or 2) Get myself to the closest hospital. At least being driven to the hospital, I was in charge and took control of my actions. The pain was excruciating and I had to think fast. Was it the best choice? I don’t know. Had I arrived at the specialized cardiac unit sooner, could it have sped up my treatment and improved my outcomes? I will never know, but I acted based on the information I had, and that is all we can ask of ourselves. My point here is you need information to make the right decision for you. As a cancer patient, this could not be more important.

Back to my story...Once I was in a hospital room, the cardiac surgeon explained to me that the artery that was blocked is one of the most important ones, providing blood to my heart. It was blocked at 90%. I was fortunate to have acted quickly when I started to experience my symptoms; had I not, I would not be alive. I was going to need serious cardiac rehab and to take many medications for life. My diagnosis was called a STEMI (ST segment elevation myocardial infarction) in the Anterior Ventricle Artery. 

Anterior STEMI


This type of STEMI usually happens when a blockage occurs in the Left Anterior Descending (LAD) artery, the largest artery which provides blood flow to the anterior (front) side of your heart.


Because the LAD is so large and feeds so much heart muscle, a heart attack affecting this area has a much greater negative effect and is considered to be the most serious and dangerous of all.

I was completely shocked and had never felt so vulnerable. The weight of what had happened to me began to set in. My event helped me better understand the reality of what you must have felt when you, as someone living with myeloma, were given your diagnosis. You could be the strongest person in the world, but when you are hit with this kind of life altering news, you feel totally helpless and angry — at least that is how I felt.

When I returned home a few days later, I did what most people would do: hit the internet to read from Dr. Google. What I learned was that the type of heart attack I had was called the “widow maker”… now, I was even more scared. I learned that up to 10% of people who experience a STEMI heart attack die within 30 days, that 23% of women will die within one year after a heart attack, and my life expectancy may decrease by about 8-10%. Finally, I also learned that to beat these odds, I was going to need medications for life and to seriously reduce my risk factors by engaging in a cardiac rehab program. A lot of these facts were confirmed by my cardiologist. She was also very good at reassuring me that with the positive attitude I was displaying and my determination to make life changes, I was putting all the chances on my side to make a full recovery.

I was now the one in need of advice, good information, emotional support, and a community behind me to give me hope, listen to my fears, ask questions to, and support me while I processed what had happened to me.

These are all things that all the staff at Myeloma Canada, along with our countless wonderful volunteers of patients, caregivers, their families and friends who step up to be support group leaders, offer peer support, provide information, hope, and so much more, do on a daily basis.

Obviously, heart disease is not cancer and nothing like myeloma. But, it is a disease that will always plague me and will require me to take medications for the rest of my life. These medications have side effects that are not fun, but they are not as bad as the medication side effects many of you must endure. This too has better sensitized me to what many of you must withstand. Like you, my medications help control my disease and represent the benefits of innovation for which I am grateful. Imagine thinking of putting a tube inside your artery to unplug it! A long tube going through a vein from your arm right into your heart that releases a dose of medication at a very slow rate. That is innovation!


Since I have been involved in myeloma, which is now an incredible 20 years

(I started in 2004!), the innovations for this cancer have been growing in leaps and bounds. I am sure we will find a cure in my lifetime.

As I just passed the first-year anniversary of my STEMI, I find myself relating even more with those of you who have undergone a stem cell transplant and passed your milestone with a better understanding of what you have experienced. Knowing that my risk of another heart event is higher, especially because of my family genetics, is weighing on me much in the same way I would imagine someone with cancer worries about a relapse. But that is not a reason to let myself down.

I am very happy to share that my heart has made a full recovery;

its function is back to that of a normal woman of my age.

The recovery has not always been a straight upward line. I have faced great fatigue, PTSD symptoms, and anxiety about the idea it could happen again. I have fallen asleep thinking that I would not wake up in the morning, feared that every time my heart was not beating in the right way, another episode was about to hit me. Over time, I have learned through the help of others, by seeking reliable information, advocating for myself, making good healthy lifestyle choices, and adopting a positivity mindset, that I am going to be okay.

Having experienced such a frightening health event, I appreciate more than ever, the extreme importance of what we do at Myeloma Canada. I pledge to you that I will continue to instil the need to do better and invest in innovative research that provides more hope for our myeloma family.


I hope you have a great end of summer and enjoy time with your loved ones. Do what makes you happy and embrace life because it is so precious.


Love,

Martine

Myeloma Canada's promise: 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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