Spotlight on Susan McElwain

Spotlight on Susan McElwain:

Soaring and enlightened

August 2023

Susan McElwain

Hello,

My name is Susan McElwain. I was born in Toronto, Ontario, 1960.

I was diagnosed with Multiple Myeloma in December 2016. Previous to my assessed illnesses I was an avid sports enthusiast and relished in the idea of worldwide travel. During my twenties I resided in Kailua and Honolulu, Hawaii, and in Porto Ercole and Rome, Italy.

In 1988, I was hired by Wardair Canada, thus furthering my adventurous way of life. My chosen career with Wardair, Canadian Airlines, and Air Canada allowed me to travel and enjoy worldwide destinations. Sightseeing, sporting activities and taking in the local culture played an integral part of my layover time. I flew for twenty-eight years before taking ill. Working as a flight attendant became my way of life.

Unbeknownst to me, it was time for a change.

Me in Hawaii, 1982. I led an active life.

In Nov 2016, after a month of flying to Copenhagen, Istanbul and Delhi, I noticed I was fatigued more than the usual jet lag. A friend came to check in on me when I wasn’t responding to his phone calls.

He found me asleep, lying on the floor in my hallway and insisted I be taken to emergency. (I thought that I was jet lagged and exhausted due to my busy schedule).

Approximately 11 weeks before diagnosis, 2016.

I was taken to St Michael’s Hospital. In emergency I was quickly triaged into urgent care. My vital signs indicated that I required immediate attention. The concern was that I had contracted an infectious disease in my travels. I was given doses of antibacterial drugs and was released after three weeks. The infectious disease specialist ordered a blood test before releasing me from the hospital.

The next morning, I was called by a nurse at ‘St Mike’s’ requesting my immediate return to emergency. My elevated creatinine level showed that I was experiencing acute kidney failure. I was readmitted to emergency and a barrage of tests ensued.

The specialists were perplexed. Dr Perl, my current nephrologist, was the specialist that connected my renal failure to a possible MM diagnosis. He ordered a bone marrow test which revealed a positive test result for MM, hence my renal issue.

The MM diagnosis was announced on Dec 17, 2016.

The first week in January, specialists confirmed, after numerous blood tests, stool samples and saliva swabs, that my pneumonia symptoms were related to MAC bacteria (Mycobacterium infection).

The doctors concluded that contracting the MAC bacteria, a lung disease, saved me, thus prompting an early MM diagnosis.

The MAC bacteria needed addressing before I could prepare for an autologous stem cell transplant (SCT). I was placed on a cocktail of three anti-viral drugs (azithromycin, rifabutin and ethambutol). After five months of treatment, in September 2017, I was pronounced medically fit for an autologous SCT. Before having the cell collection, I was prescribed a regime of CyBorD (cyclophosphamide, bortezomib and dexamethasone) for four months.

After the stem cell collection, due to my weakened state, the pneumonia reappeared, and I was hospitalized until my health improved. The agenda for the next three months was to ready myself for a second attempt at a SCT in December 2017.

I was an outpatient during my treatment at Princess Margaret Hospital (PMH) in Toronto. Fortunately, I was able to reside for a month with my parents at their downtown residence. The day of my SCT I was instructed to diligently take my prescribed drugs at given times and monitor my temperature a few times daily using a logbook.

My father drove me to PMH daily for infusions. There was an outbreak of pneumonia in the ward. Day five, my temperature rose which led to a lung infection for which I required hospitalization.

(Another Christmas in the hospital!)

MAC and MM are manageable, but thus far, not curable. I am especially diligent in preventing exposure to colds, flu viruses, and communicable bacteria. Nonetheless, I have had to be hospitalized on numerous occasions to treat MAC and MM related issues. My kidney function is also a cause for concern, so I have adapted to a diet better suited for stage IV kidney disease and an AB blood type.

Before my diagnosis, I was not aware of the medical term multiple myeloma.

I knew of people dying from bone and blood diseases but there wasn’t a name that I was aware of associated with these cancers. I was shocked to hear the words MULTIPLE MYELOMA when the specialist gave me the results of the bone marrow extraction.

I quickly read up on the cancer before informing my family. I notified my employer that I would not be returning to work in the near future. I envisioned that my wellness program would be time consuming.

I am blessed that my family has been a constant support and has been by my side during this MM journey. I revealed my diagnosis to a few close friends. I’m fortunate because, besides losing my hair twice during the chemo inductions, thus far, I look well.

Sibling support!

I have been living with MM for 6.5 years.

The day-to-day with this cancer has changed my life in a positive way.

I embrace change and equate it with personal growth.

I have always been an avid cook. My flying career inhibited me from being serious in the kitchen. After my diagnosis, the kitchen morphed into my happy place. I tested and experimented with recipes gleaned through my travels, family and friends. During the Covid-19 pandemic, I enrolled in an online course to obtain a cook’s license. This enabled me access to an industrial kitchen.

I rethought recipes that became family favourites. I played with and altered a twenty-year-old recipe for hot sauce. My friends and family were my tasters and encouraged me to push forward with the recipe. After Covid restrictions lifted, I bottled my new and improved hot sauce in my kitchen, and I named it SAVAGEHOT. Family and friends asked for more. The positive response was overwhelming!

My sister and I decided to turn SAVAGEHOT into a business.

During this time, I also became aware of various MM groups by reaching out online. I first became aware of Multiple Myeloma Canada through a news media outlet covering a marathon run in Toronto. On the evening news, runners were sporting Multiple Myeloma tee shirts to support Multiple Myeloma Canada. I researched online and followed news and activities promoted by their site.

I decided that I could contribute to Multiple Myeloma Canada through the sale of SAVAGEHOT. My sister, who runs the business, connected with the organization and we’ve decided to pledge a percentage of our revenue to Myeloma Canada.

I feel a renewed sense of purpose and drive knowing that my product brings smiles to people’s faces, in addition to contributing to Myeloma Canada in a positive way.

My zest for life is reinforced by my concerned, caring and forever supportive family, in addition to a group of friends who are encouraging, understanding and active in my life.

I would be remiss if I didn’t mention the excellent care I received from the staff working with St Michael’s, Princess Margaret, and Toronto General Hospitals. My SCT specialist Dr Kruketi, infectious disease specialist Dr Kumar, and especially oncologist Dr Trinkaus and nephrologist Dr Perl, have been my lifeline, support system, and my biggest cheerleaders through my wellness program.

The WHO concert with friends, 1981

Without their concern, compassion and care I would not be managing my best life possible. 

I have always been fuelled by an adventurous spirit and MM has given me the opportunity to continue in my quest for new opportunities.

Humility and gratitude I draw upon daily to push me through my day.

Being diagnosed with MM is not a death sentence, although life altering, it’s merely a change of circumstance. How one digests the diagnosis is up to the individual. I prefer to soar. I’d rather be enlightened, not frightened.

Multiple myeloma warriors, keep moving forward. With hope, all is possible.

Peace and well-being to you all.

Susan McElwain

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.