At 33, I was confronted with two diagnoses that reshaped every assumption I had about my future. I learned I would live with Chronic Lymphocytic Leukemia for the rest of my life, and I was told I would not be able to have biological children. The grief was overwhelming. I couldn’t have imagined then that these experiences would eventually lead me to the person who became my life partner.
My journey with CLL began in 2020. While playing with my nephews, I noticed a swollen lymph node in my neck. As it continued to grow, so did my unease.
Of course, I felt compelled to see my family doctor to address what I had been feeling. After an initial ultrasound and bloodwork, I was told that the cause was likely just a viral infection and that I shouldn’t worry too much. Despite being dismissed, I knew I needed to request more testing, because in my heart I knew something was wrong. Each time, it was refused.
By 2021 my symptoms had escalated – weight loss, rashes, hot flashes, and more swollen nodes. It was at this time that my family doctor resigned, and my new family doctor took over at the practice. Immediately I felt cared for, listened to and have had her full support to this very day. We set forward with urgency and in May 2021, after additional blood work, imaging, and a biopsy, the diagnosis of CLL was confirmed.
Hearing the word “cancer” at 33 was shattering. CLL is typically diagnosed around age 69, and I struggled to reconcile my age with the reality of a blood cancer. Wellmeaning reassurances that it was a “good cancer” often left me feeling unseen in my fear and grief. Through the LLSC peer support program, I hoped to find someone who understood what it meant to face CLL as a young woman – but there were no peers who matched my experience.
Around the same time, I was also diagnosed with premature ovarian failure. The symptoms I experienced closely mirrored those of CLL and, at just 33 years old, this diagnosis was uncommon. However, my exceptional family doctor truly listened, ordering comprehensive bloodwork and referring me to a cancer fertility specialist, who ultimately confirmed the diagnosis.
Learning I would not be able to have biological children compounded the emotional toll. With COVID19 restrictions in place, I attended most appointments alone, which intensified the sense of hopelessness and isolation as I navigated a second lifealtering diagnosis without a support system.
Over the next two years, my disease progressed slowly. By 2023, worsening fatigue, shortness of breath, and widespread lymph node enlargement began to erode my confidence and quality of life. Treatment became necessary.
As I began to work with the hematologist, my feelings and concerns went unheard and unvalidated. CLL in a woman in her mid 30’s seemed to be uncharted waters for this doctor. I knew I needed to advocate for myself and make a change.
I asked to be referred to Princess Margret Hospital in Toronto and began my journey with my new hematologist. She understood my concerns as a young female with CLL and premature ovarian failure.
A year later, I began a newly approved combination therapy – ibrutinib and venetoclax – selected because it suited my age, disease profile, and desire to maintain as much normalcy as possible. Financial and physical challenges came with treatment, but support from insurance and assistance programs made it attainable.
During one of my specialist visits in Toronto, I met the man who would become my partner. His presence became a steady source of strength throughout treatment, and we remain together today.
Within weeks of starting therapy, my symptoms improved dramatically. My lymph nodes shrank, my energy returned, and I was able to go back to work and reclaim the activities that bring me joy – hiking with my dog Ani, home renovation projects, concerts and volunteering at the SPCA. After 16 months of treatment, I tested negative for minimal residual disease.
I share my story in the hope that healthcare providers and patients alike recognize that even acancer with a favorable prognosis can profoundly disrupt a person’s life – especially for younger individuals who fall outside the expected demographic. This journey has taught me the power of self-advocacy, the importance of trusting oneself, and the value of speaking openly about my symptoms, fears and needs. It has also shown me that even in the darkest days, light can still be found – or, in my case, a Prince Charming – if we allow ourselves to see it.
The author, Janice Skoblenick, is a participant in the Leukemia and Lymphoma Society of Canada’s First Connection Peer Support Program, in which experienced patients offer support to other patients. She can be reached through this program https://www.bloodcancers.ca/first-connection-peer-support-program.