Honest truths about living with a cancer most have never heard of

The entry into my 40s was jarring.

At 42, the disorienting experience of living and parenting through the pandemic eased only to make way for the next challenge, a shocking diagnosis of an incurable cancer.

Multiple myeloma is a rare type of cancer overall, but it is the second most common blood cancer. 

Approximately 11 people in Canada are diagnosed every day. Its effects on the patient and their families are profound and life-long.

Women in their early 40s typically do not “fit the profile” for this disease, making it so worthwhile for those who are diagnosed to share their stories.

Since March is Multiple Myeloma Awareness Month, I am sharing mine.

It is a complex disease and can be difficult to diagnose. Its symptoms can be subtle or severe, depending on the person. And some, like me, have no noticeable symptoms at all.

I was extremely fortunate to have mine caught early, and entirely by chance, after donating plasma. 

It has been three years since I started treatment, and I am so fortunate to be coping and living well with multiple myeloma. 

The first year was obviously the most intensive. It included four months of weekly treatments in hospital along with medications to manage at home. I was given a steroid, which caused enormous peaks of energy and sleeplessness, followed by an energy and mood crash.

That set the stage for a stem cell transplant, a common part of treatment for myeloma patients, to help achieve a deep and hopefully lasting response. 

It was a gruelling procedure. Some liken it to a prolonged case of food poisoning. The strong chemotherapy used does a number on the gastrointestinal tract, wipes out the immune system, and causes hair loss.

I knew I needed to rest when I needed to and to be active when I could. I got a beautiful wig. A few months after the transplant, I learned it was successful in controlling the myeloma. 

I was recovering physically well, looking forward to returning to work, even though my treatments would need to continue at a less intensive level.

I had come to a place of acceptance about the medical advice that I would always need to be on some form of treatment because of the high-risk nature of my disease.

I had overcome persistent feelings of darkness and hopelessness about a shortened lifespan.

I felt strong and proud of what I had overcome and was looking forward to some normalcy.

A new challenge

Then came the next challenge. Early menopause, which was induced by my stem cell transplant. 

While it may sound surprising, this felt just as difficult as what I had already endured after my diagnosis and treatments.

The transition into menopause that typically and naturally occurs over a period of years can occur rapidly in women who undergo certain cancer treatments. This was certainly the case for me.

Luckily, because I was under such careful monitoring post-transplant, I easily got a referral to a menopause specialist and, mercifully, was a candidate for hormone replacement therapy. 

This was an absolute game-changer. It helped me manage my physical and mental symptoms, allowing me to bounce back faster and return to work.

Despite my ongoing treatments, I feel well overall and like myself again. I work, exercise and travel.

I have moved on from the worries about whether I would see my youngest graduate (spoiler alert, it looks like I will!) to managing hospital trips, injections and never-ending bloodwork as routine and annoying parts of my life.

I try to be mindful about how fortunate I am to live with these challenges today.

Historically, the prognosis for myeloma was grim. Today, while incurable, it is treatable for many. There is plenty of hope and optimism thanks to incredible advances in treatments and research.

It is also a time of hope and optimism when it comes to menopause. 

Unlike what our mothers may have experienced, we can be more open and honest with our families, friends and doctors. We can insist on better care and treatment options. 

We have more information than ever before about lifestyle changes that can help us to thrive during mid-life and beyond. Whether we are catapulted into menopause early because of medical treatments or experience it on nature’s timeline, we do not have to simply grin and bear it. 

It has been a challenging start to mid-life, but I have so much for which to be thankful, including a wonderful husband, healthy children, caring family and friends, and a responsive medical team. Oh, and hormones — really grateful for those too.