Spotlight on Betty Boudreau:

Multiple myeloma, you picked the wrong gal to mess with!

September 2023

Betty Boudreau

My name is Betty Boudreau and I was diagnosed with multiple myeloma (MM) on July 4th, 2018. I was 62 and had never heard of multiple myeloma.

In fact I didn’t even realize myeloma was a cancer until, upon being diagnosed, I was told that my oncologist would be in to see me later.

I was born in East Vancouver, BC to an impoverished single mom. I had 5 older siblings and my father was never a part of my life, although I was extremely close to his parents. I graduated from Gladstone Secondary in 1974, the only one in my family to graduate. Many of my high school friends are a big part of my MM support team.

I met my husband later in the year and we were married in 1977. I have 2 daughters and 5 grandchildren. I lost my husband in 2000. I love to crochet and was with Girl Guides Canada as a Leader for 39 years. I live with my eldest daughter Misty and her family in Surrey, BC.

I was a stay at home mom and a foster parent for many years, going to work once my youngest daughter Tafra was in high school. I have worked for a paramedical company, in real estate, and I recently retired from the steel industry.

In 2013, September 13^thto be exact,

I stood up from my desk and felt a snap.

I had trouble putting weight on my left knee and figured I had twisted it. I finished my workday and hobbled to my car. I got home, laid on the couch and iced my knee. At about 7:30 pm I had to go to the washroom but I was unable to stand! I called Misty and she and her husband Nate came. My knee was very swollen. They called my other daughter Tafra and she and her husband Girard came right over.

The boys lifted me into the van and off we went to emergency. I was taken in right away and was in agony. X-rays were done and the doctor came in. He told me I had spider web cracks in my plateau bone, the bone that the knee joint sits on, that I also had advanced osteoarthritis in my knee and should see a rheumatologist. Treatment was Tylenol 3’s, rest for 2 weeks, heat and ice. I was to limit standing to washroom needs only.

A few weeks later, I saw a rheumatologist who looked at the X-rays, asked questions and fumbled with my knee. He confirmed the ER doctor’s diagnosis and told me I would not be a candidate for knee replacement as the joint wasn’t damaged but rather the main part of the leg bone. Eventually my knee healed and life went on.

In 2016 I was finally in a space, emotionally and financially, to travel and so I went on my first cruise to Alaska with my crochet group. By 2018, many in our group had become good friends (and still are today), so we decided to all go again! Work had been very stressful and our home was being renovated. I really needed this vacation; I was so tired.

Within a couple of days, I had several people, including the cruise organizers, ask if I was okay. They said I seemed very tired. I wasn’t my usual outgoing ‘let’s explore and party’ gal they knew from the first cruise. I just put it down to the stress and workload from work.

By the 6^th day I convinced myself I must have a cold, or maybe I had picked up a bug on the ship. I still went to all the classes and several excursions but I wasn’t getting up at 6am to watch the sunrise and I rarely stayed up after 9pm for the cruise nightlife. Several friends commented they were worried about me but I just pushed it aside.

Once I was home, I figured my tiredness and low energy were due to the fact that work was crazy busy. I had a new supervisor and more responsibilities. I started eating my lunch in my car so I could take a quick nap every day.

I had moved in with Tafra temporarily while our renovations continued. She and her family went on vacation and I was alone in the house. I still was feeling crappy. On Canada Day, I went to make myself something to eat, and I struggled to open the fridge door … a stainless steel fridge door!

" Okay, so maybe I should go to the doctor! "

On June 3^rd I went to see my family doctor, Dr Patrick Yu, and we figured that perhaps I had pneumonia. He decided I was due for a panel of bloodwork so I got that done before I went home. I was so tired! I called my office to let them know I would be off for a few days, and I went to bed shortly after 5:00 pm.

Apparently, Dr Yu started calling me around 10:30 pm that night. He had seen my test results when checking his email before bed. He called me several times late into the night and again early the next morning. He finally reached me around 9:30 am when I woke up. The phone had been on the bedside table all night. I never heard it ring!

He told me I needed to get to emergency immediately.

I was in acute kidney failure!

Dr Yu had already phoned my son-in-law Nate who was on his way to get me. When Nate and I arrived at the hospital I was immediately taken in and they drew blood right away. I had so many blood tests done that day I was surprised there was any blood left in me! 

The rest was pretty much a whirlwind. I don’t remember most of it, but we were told that it was important for my family to come right away. Tafra flew in that evening from her vacation, and Misty drove home from the cabin.

I met my nephrologist Dr Zheng that day. He was very blunt. They would do everything they could to save my kidneys but it was looking bleak.

At around 8:30 pm, another doctor came in, Dr Kai Luecke, and was introduced as my oncologist.

That’s when I was told I had multiple myeloma, and that it was cancer.

Misty squeezed my hand and had tears in her eyes. She is an RN (registered nurse) and knew what this was…and so began my journey.

When I had my first conversation with Dr Luecke and he was doing my history, I mentioned the knee incident I had 5 years earlier. He looked up from writing his notes. asked a few more questions about whether I had any other tests, if X-rays, MRIs, or blood work had been done, and without saying it outright, I got the distinct impression that he felt this may have been the first indicator of my myeloma.

Had I had the proper tests and follow up at that time, my kidneys would not have been damaged, at least not to the degree they were. 

This! This is why awareness is so important!

It isn’t just the general public who need to be educated and to know the right questions to ask, but all medical professionals as well. I was always amazed when I heard “What do you have?” or “I’ve heard about that, but I really don’t know much about it.” Things are improving since I was first diagnosed, but we can always do better.

To be honest, the next part of my journey was another whirlwind of tests, tests and more tests, a small surgery to put in a permanent catheter for dialysis, education sessions, dieticians, social workers, and counselling (I had two of each, one for MM and one for kidneys) for my mental health.

Again, I don’t remember much of it. I slept a lot. My daughters were with me for most of the first 3 weeks of my 5 week hospital stay (my kidneys needed to be in better shape before I could start dialysis). Once dialysis started, I had it for 3 days a week, 5 hours a day. Actually, it was really more like 7 hours a day when you include checking all my vitals, hooking me up to the dialysis machine, having the procedure, unhooking me, and more vitals. Those days were so exhausting and scary. Alarms going off, constant checking of my catheter to make sure it wasn’t getting blocked, and no way to really rest.

Then chemo started.

I was on bortezomib, cyborg and Dex and had it every Wednesday at 2:00 pm,

right after dialysis. Two week later, I was sent home.

It was only 5 weeks since I had been diagnosed.

I was on the same dialysis/chemo schedule but now as an out-patient. Misty dropped me off for dialysis at 6:30 am which finished at 1 pm. After dialysis, I had to make my way through the hospital to the Cancer Clinic for chemo.

I will never forget the first time I came up to the doors of the Cancer Clinic. I stood there in the busy hospital corridor and stared at those doors, unable to make myself push them open and walk inside. I was petrified; this suddenly became very real to me, I had to do this alone. There was no porter to push me in on a stretcher or wheelchair joking with me, taking the focus off what was ahead… this was just me!

About 10 minutes of standing there, watching others go in and out of those doors, a nurse came up and asked if I needed assistance. “I can’t do it, I can’t go in!”

She asked if this was my first time going in alone and I simply nodded. She took my hand and walked me through the doors, helped me check in and then sat me in the waiting area.

I had tears in my eyes. I felt like everyone was watching me, judging me for being such a baby. I vowed in that moment that if I got through this, I would always try to help others feeling the way I did at that moment to get through it!

Life was different. It literally was dialysis, chemo, rest, sleep, try to eat, become friends with the bathroom, and repeat, for the next 7 months. One day, Dr Zheng came into the dialysis room and said “You don’t need this today, your kidneys have recovered enough to take you off!”. I didn’t believe him and made him repeat it!

He said I still had a hard road ahead but if I continued with my renal diet and my chemo continued to go well, he would just need to monitor me weekly with blood work! 

Nine weeks later, Dr Luecke gave me more great news:

my numbers had dropped so low my MM was no longer detected!

I was in complete response.

No more chemo for the foreseeable future!

I thought life would return to normal, that I could go back to work, that my life would be what it was before but it wasn’t. I was still so tired all the time. I had aches and pains all over and I couldn’t seem to remember things.

Chemo fog had turned into chemo brain and it was determined I had a severe case of it. I entered into a brain study hoping to reverse it only to find out that it could take 5 or more years to recover back to where I had once been. I worked in the accounting department; numbers were now just a jumble; there was no going back to work. I continued on long term disability until my 65^th birthday and retirement.

I had planned to work until I was 72; that plan was over.

Shortly after my diagnoses, my daughters and I talked about who to tell and when.

My biggest concern was my grandkids.They knew Nana was in the hospital and the 3 eldest, my girls, are smart. They knew that their moms had rushed to be with me.

I am very involved with all my grandkids; I live with 3 of them and the other two live 7 minutes away.

We made the hard decision to tell them my diagnosis. I had always been honest with them and I wasn’t going to change that now. It was difficult. They all sat on my hospital bed and we told them together.

My family and my cheerleaders! Christmas 2022 with my daughters, sons-in-law, grandkids and the best man and maid of honour from my wedding! Jack is a 4 time kidney transplant survivor (unrelated to myeloma) who has listened and advised me. Lynne donated one of her kidneys in a circle transplant.

We explained in simple terms that Nana’s kidneys were sick and they needed lots of help, and that Nana’s blood wasn’t doing well either. I told them the doctors said I had cancer. My eldest knew what that meant, she had already lost her Gran to lung cancer when she was five. They had all heard of cancer and I promised them that the doctors and more importantly, I would do everything I could to fight my Multiple Myeloma.

I don’t break my promises to my grands.

I fight every day to keep going!

We decided that my girls would post the news on my Facebook page since close family members had already been told. I want to be open and honest with everyone and this was the most effective way. Facebook has become my platform but more on that later.

Once I was home, I had a lot of time for my mind to wander, often to places I did not want to go. I had questions but couldn’t constantly be calling my doctors. I had feelings and emotions I didn’t know what to do with. The psychiatrist gave me pills for anxiety but no answers to the emotions I was feeling. The counsellor told me that my emotions and feelings were normal, to write them down. Well that didn’t work. I just came up with more questions and thoughts. I didn’t want to burden my daughters, my sister, my family members - none of them had gone through this and I didn’t want to make them worry. 

I turned to the internet (I know, don’t go there!) but I did! I didn’t go to find out about multiple myeloma, I had been told everything I needed to know about it. I went to find answers from people who KNEW exactly what I was going through and could validate my feelings, my pains, and my fatigue that seemed to come out of nowhere in the space of a second.

I found what I was looking for on Myeloma Canada’s website:

a connection to a local support group of others who had MM

and lived in my community, in Surrey (BC)! 

Me in White Rock with Phil Harbridge (left) and Tom Taylor (right) of our Surrey & District Multiple Myeloma Support Group

Let me tell you, walking into that first meeting was very much like standing in front of those big doors at the cancer clinic. George, a member of the support group, walked up to me and walked me in. His wife had MM; I was in the right place! 

That day changed me.

I wasn’t going crazy.

These people understood my emotions, they shared the pain, they understood the anxiety over what came next, and they would be there to share their journeys while I was in mine. They answered questions, they listened, and most importantly, they understood!

I went back to the commitment I had made to myself my first day in the waiting room. I didn’t want anyone to feel as alone as I did that day. I wanted to be involved in talking with people, helping them to find the strength in themselves to fight. 

As a group, we wanted to have a table at the Cancer Clinic. We had brochures about our support group and what we could do together which we provided to the oncologist at the Center. We asked that the brochures be given to myeloma patients, especially the newly diagnosed….and then the pandemic crashed down on us. We continued with our monthly support group meetings via Zoom. We lifted each other up, we offered advice and solutions, and virtual shoulders.

When talk started that the pandemic would soon be over, Myeloma Canada launched a new event, a bike ride [the Myeloma Canada Ride] to raise funds for research and awareness for myeloma. The word awareness leaped out at me!

I have never been shy to talk and educate anyone who would listen,

so I jumped on the opportunity to work on the Vancouver Ride!

I had done some events for various charities, I was a past member of the Lions Club, I had been with Girl Guides and planned event… this was something I could do! I joined the organizing committee.

I haven’t mentioned it because it isn’t my story to tell, but it is a driving force for what I do...

Two years into my diagnosis my eldest daughter Misty

was also diagnosed with multiple myeloma.

Thankfully there is no kidney involvement, but it is equally devastating.

Misty formed a team for the Ride, Dirty Chains. Most people didn’t get the name, thinking it was something else but those of us who have MM understood!

Now we needed volunteers. Misty volunteered her kids, her husband stepped up with prizes and joined the set up team. My youngest daughter Tafra offered to head up the first rest stop/lunch stop, her kids would help, and her husband arranged the sound equipment. I agreed that I would organize the donated prizes and do registration. It was a family affair!

My 2022 Myeloma Canada Ride team: Brooke, Misty, Dayton, Cheyanne, Ava and in the front Emmett and Tafra

Misty rode 30km and while we were all exhausted, my heart was full!

I met Michelle Oana from Myeloma Canada at this first Ride. Michelle was so easy to work with and made it so easy to keep saying yes to volunteering. Thanks Michelle, for giving me my voice 💕!

Michelle mentioned that the Multiple Myeloma March was coming up and volunteers were needed. There would be

2 walks in the lower mainland, would I help with one? No. I volunteered to do registration at both, back to back days!

Me and Michelle at the 2023 Vancouver

Multiple Myeloma March

Fast forward and the next year’s Ride was being planned; it was going to be bigger, better and now with more experience, more efficient. I was on the Organizing Committee in charge of registration and organizing prizes.

Misty and Nate at the 2023 Ride finish line

Once again, my family stepped up and a new family tradition was born.

Some tasks were repeated, some shuffled but all of us excited to be part of it! My eldest granddaughter (16) worked side by side with me in the weeks leading up to the Ride and was my right hand on the day of. My grandsons, 11 & 12, ran the coffee station at the start, cheered on the riders as they left, waved them in at the finish, and handed them their finish acknowledgment gifts. Alongside my daughter and her husband, my middle granddaughters, 13 & 14, worked hard at the lunch stop, greeted riders as they took a break, guiding them to lunches, water, and washrooms. Can you tell how proud I am of all of them?

Many riders are there to support their friends or family members and many ask questions. At the 2023 Ride, there was a couple walking through the park with no knowledge of the Ride. Ironically, he had been diagnosed with myeloma the week before. He was overwhelmed and had no idea about support groups. Several of us spoke with them and encouraged them to be in contact.

And now, we are coming up to 2 more Marches and I will be doing registration at both. I will speak to passersby who ask questions, “What is Multiple Myeloma?” and I will answer them!

The most important part of my involvement is awareness!

I use these volunteer opportunities to flood my Facebook on a weekly basis about not just the events, but facts about what myeloma patients endure, what myeloma means, its signs and symptoms, and what their donations can do for patients!

I have met so many incredible people with myeloma. I hear their stories, their triumphs and setbacks. I smile with them, laugh with them, cry with them and yes, even sometimes argue with them.

The 2023 March: Me at registration (behind the pole!), Misty (holding our yorkie), my eldest granddaughter (white sweatshirt), volunteers and members of our Support Group

I have been asked where do I get my strength and how do I stay positive?

Believe me, I don’t always feel strong or positive BUT I look at my family, my daughters who are so strong… this is their journey too. I look at my grandkids, also on this journey with Misty and me, and I reclaim my strength and jump back into positive thinking.

Negativity and weakness don’t belong in my family or my journey. They only hold me down and I’m a fighter! 

Multiple myeloma,

you picked the wrong gal to mess with!

Betty

On my 3rd Alaskan cruise, 2022

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.

To donate to Myeloma Canada

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.

In 2013, September 13th to be exact,