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Spotlight on Natalie Kononenko:
Introducing myself
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I was born in a refugee camp in Germany. They were called DP, or displaced persons camps in those days and that is where my parents ended up when they escaped the Soviet Union during the Second World War.
Access to food was terrible and I developed bone issues that have plagued me my whole life and likely contributed to the multiple myeloma that I was diagnosed with three years ago.
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Although I was a sickly child, I was a determined one. We emigrated to the United States when I was five years old and I quickly learned English. This allowed me to take care of the rest of the family when my father, the only other person who knew English, was away working to support us. |
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I attended public school in our home town of Boonton, New Jersey and then went to university at Cornell. I transferred to Radcliffe when I got married. The marriage did not last, but my academic career did and I entered graduate school at Harvard, earning masters and doctoral degrees in Slavic and Near Eastern Languages and Literatures. I took a job in the Slavic Department at the University of Virginia where I also held several administrative positions, including Assistant Dean of the College. In Virginia, I met and married Peter Holloway who has been my loving spouse ever since.
I was recruited by the University of Alberta and we moved to Edmonton in 2004. We love Canada and have lived here ever since. In Alberta I had the good fortune to be part of a ten-year data collection project where we travelled the Prairies, documenting Ukrainian churches and sacral culture. My job was to interview Ukrainian Canadians about weddings, baptisms and holidays such as Christmas and Easter. A book based on this work will be coming out soon. I also wrote other books and two of them won best book prizes. These were based on Ukrainian folklore, primarily historical poetry.
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I have always loved art. I also loved painting and drawing and almost left graduate school for art school at one point. I love crafts and I still knit and embroider as an adult. One thing that I noticed early on was the connection between art and physical and mental struggles. I wondered why this was true and I have sought that answer my whole life. Another reason for my interest in medical issues was that my brother was deaf. He was quite a good painter, although his job was in the technical field. This may be the reason behind my writing about blind minstrels, the subject of my first prize-winning book. |
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Before I retired from the University of Alberta, I felt somewhat less than myself. I was still very strong, but I was having problems with balance. I attributed this to old age.
Once I retired, we moved to Waterloo to be with our son. After the move, my son and my husband were unpacking books and I was carrying them upstairs. The next day I knew that there was something more serious than old age. We had no family doctor and I went to a clinic. The doctor touched my stomach - I screamed and she sent me to the emergency room, supposedly with appendicitis. While there, the physician in attendance said that I had all of the classic symptoms of multiple myeloma.
It took a month and a half and a bone marrow biopsy to confirm the diagnosis; I was also told I had a high risk form of this disease. I fought.
During that time I was quite ill, with pain and an inability to walk. My leg would freeze up and I would have to drag it to move. Needless to say, I could not drive. When treatment started, the meds did the trick and several months later I started simple exercises specific to myeloma patients. I went on to using an exercise bike and weight training, even before the stem cell transplant. After the transplant, I started more serious exercise. The weight training has been very beneficial. It has allowed me to increase my bone density, heal some of my lytic lesions, and straighten my spine.
I am currently MRD negative even though the initial bone marrow biopsy showed the highest count of free lambda light chains that my oncologist had even seen. I can now do 3 rounds of 15 squats with 95 pounds on my back. I can chest press 65 pounds. I have improved my bone density by 7% and healed some of those horrible lytic lesions that come with myeloma.
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Multiple myeloma is forever. Relapse after a stem cell transplant leads to drug treatment, or successive drug treatments. This means that I spent, and still spend, a great deal of time at the Grand River Regional Cancer Centre. Seeing other cancer patients, both those with myeloma and those with other cancers and interacting with them, it occurred to me that I could use my interviewing and writing skills to help them. I could capture, write about, and convey the experience of the cancer patient, using my artistic skills to support others. |
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What I had in mind was something other than patient stories. Most myeloma organizations publish stories of individuals. They are usually very successful patients who overcome adversity, succeed in getting the treatment they need, and experience good medical outcomes. The stories are meant to be inspirational, but many patients cannot see these as something they themselves can achieve.
I wanted to paint a picture of patient struggles.
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I wanted to capture the real world of cancer patients so they would see they are not alone, that others have the same problems. And I wanted to give members of the medical profession a better sense of patient struggles.
To write this sort of text I needed to interview many people and abstract issues of particular concern from their accounts of their cancer treatments. I had already done a few interviews with cancer patients with whom I had become friends. Then I met the President of HopeSpring Cancer Support Centre [serving the Waterloo Region of Ontario] and have been partnering with them on many projects. So far I have interviewed approximately 20 people. As I talk to cancer patients, issues and concerns emerge. I also write essays for the HopeSpring newsletter.
I have written about impediments to early diagnosis, about vocabulary used by the medical profession which patients find discouraging and which prompts sick syndrome – living down to the definition of one’s self as sick – as well as other topics. I need to write about problems of access to information.
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The responses I have received to my essays have been so positive; they've surpassed anything I had expected. People have asked to share what I have written with others, precisely as I hoped they would do. As I work, I hope to produce a brochure for patients, caregivers and members of the medical profession. I hope to provide a service that is needed and not yet available. If you would like to share your story with me, please email me at nataliek@ualberta.ca.
Natalie
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Editor’s Note: We hope you enjoy meeting our 2022 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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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.
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