|
|
Spotlight on Rinat Avitzur:
My myeloma journey
|
|
Editor’s Note: 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 hope you enjoy meeting our 2021 Spotlight Stars and your fellow Myeloma Canada community members.
We recognize that everyone’s journey and experience with myeloma is different. If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
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.
|
|
This article first appeared in the March 2021 issue of the Toronto & District Multiple Myeloma Support Group Newsletter. Thank you to Rinat and the support group for allowing us to reprint and share it with our community. |
|
On a sunny day in September 2019, my phone rang: “Hello Rinat, this is Dr. Gottesman. I am calling to ask you to repeat your blood work. It’s been six months since your last blood work and I am following up since there was a slight abnormality with your hemoglobin count.”
This was a first. I have been Dr. Gottesman’s patient for many years and I don’t remember him ever calling me before, nor do I recall him asking for additional blood work. After hanging up I thought to myself—I shouldn’t be worried. I’ve always had quite low hemoglobin levels.
Four weeks passed since that conversation and I totally forgot about it. However, Dr. Gottesman didn’t forget…
|
|
|
When I came to the clinic to get a refill for my allergy medication, he was surprised I didn’t repeat the blood work and kindly asked me to have it done as soon as possible; he reminded me that the lab was just one floor down. I went down and completed it, not thinking of anything besides being unnecessarily poked.
The call a few days later surprised me. This time Dr. Gottesman told me he was referring me to Toronto General Hospital (TGH) for a Hematology consultation. He said he was not sure what was causing the continuous reduction in my hemoglobin count and preferred it be reviewed by a specialist.
|
|
|
|
I wasn’t worried; I was sure that the hematologist would realize I have vitamin B12 deficiency like many other women my age and I would end up on some medication. In the coming weeks I started feeling weaker, out of breath after climbing a flight of stairs, thinking I was just out of shape.
Three weeks prior to the appointment at TGH I had another blood work done and the results popped up on my phone within hours.
|
|
I wasn’t so confident anymore and turned to “Dr. Google.” Within a few searches, some analysis and cross-checks, multiple myeloma came as a potential result. But I asked myself, what is multiple myeloma?
I called my husband, Yaron, who is a pediatric gastroenterologist at SickKids and asked him what he knew about the disease:
Yaron: “Why are you asking? “
Rinat: “Because I might have it.”
Yaron: “Dr. Google is not a real doctor but if you want, I will come with you to the appointment at TGH.”
When we came out of Dr. Baker’s office at TGH, I felt very weak. He told me I probably had multiple myeloma and scheduled an urgent appointment at Princess Margaret Cancer Centre (PMCC). Additionally, he praised Dr. Gottesman for referring me to TGH, saying that I was lucky to have gotten an early diagnosis. However, I didn’t feel lucky. While driving home I told my husband, “I went into his office healthy and came out with cancer.”
The next few days were very emotional. Many questions went through my mind. What kind of treatment would I go through? Would I lose my hair? How were we going to tell our three girls, our parents and siblings? I was strong and in control and this was not part of my plan.
|
|
Within ten days, on February 5, 2020, I had an appointment with Dr. Tiedemann at PMCC where I had a bone marrow biopsy. Dr Tiedemann came into the room with a confirmed diagnosis and explained it was a treatable but not curable disease, and that recent progress had changed the life expectancy significantly from four to fifteen years.
The news was devastating. I thought to myself, I planned to live forty more years; if I only have fifteen years to live that means, twenty-five were just taken away.
|
|
|
Two weeks later I came back for my biopsy results and received my regimen. It included five months of cyclophosphamide, bortezomib and dexamethasone (CyBorD) induction chemotherapy to begin two days later, followed by an autologous stem cell transplant.
On the first day of my chemo treatment, I woke up early and panicked that I wouldn’t be able to manage it. I had so many pills to take, wasn’t sure how I would react to the chemotherapy shots and was very overwhelmed. My husband stayed home with me for that first day, which was when I understood I might not be able to go through this journey alone. The following days were a learning curve, an adjustment to the new normal. For the next five months my weeks consisted of one day of energy, two days of fatigue and four unpredictable days.
|
|
Four weeks later I returned to Dr. Tiedemann for my follow-up appointment and was presented with some more unfortunate news. Based on the genetic testing of my bone marrow biopsy, I was identified as high risk, meaning I needed tandem transplants. I wasn’t sure I understood all this information, but I knew this was too much for me to handle.
|
|
|
|
Prior to my diagnosis, I had a busy lifestyle working as an accountant and risk manager for over thirty years in various financial institutions. While I always felt in control of my career and life, this experience taught me that certain things are out of my hands. However, I never asked, “why me?” and never lost sight of the importance of maintaining a positive attitude on life. My new lifestyle provided me with the opportunity to reflect and understand how grateful I am for what I have and not take anything for granted. |
|
From this point on, I switched gears and focused on getting better and learning as much as I could about myeloma. I joined Myeloma Canada, read articles, attended webinars and wanted to know it all. Once I was introduced to the Myeloma March, I knew I needed to get involved and was eager to walk the 5 km despite the sickness making it more difficult. My three daughters took charge and raised funds by reaching out to friends and family in our community. |
|
My first stem cell transplant was on July 25, 2020, as an outpatient at the day hospital at PMCC. I was very weak at first but was determined to get stronger and have the second transplant as soon as possible. I also intended to keep my promise — to participate in the Myeloma March and walk 5 km by October 4th. My family and I walked the 5 km on September 18th and I went back for my second transplant on October 1st. |
|
During the transplants I was unwell and fatigued, but always felt a strong feeling of gratitude for the treatment I was receiving at PMCC, for the Myeloma Canada organization, the Toronto Myeloma Support Group, and above all for the love and support from my family and friends.
It has been five months since the transplants, I am currently in remission and taking Revlimid for maintenance. I am struggling with the side effects of my maintenance medication, but also embracing a healthy and active lifestyle and maintaining a positive attitude on life. I want to be here for many more years, surpass the average life expectancy, and enjoy this amazing life with my family and friends.
|
|
Rinat and her husband, Yaron |
|
During this year I have learned to be patient, fight for my life, seek help and accept the outcomes. The myeloma patient community gave me hope and made me stronger. I met so many wonderful people in the last year that have helped me, given me advice, pushed me to fight and attend to my needs. I recently joined the Myeloma Canada Patient Advisory Council and the Executive team of the Toronto Support Group. I have a new purpose and am keen on giving back. I now know that one cannot go through cancer alone and am hoping to make a difference in people’s lives.
|
|
To donate to Myeloma Canada
|
|
|
|
Follow us on social media for the most up-to-date information and resources: |
|
|
|
|
|
|
