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Stronger Together: Mark’s journey with CLL

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Nearly ten years after being diagnosed with a chronic form of blood cancer, Mark Silverstein credits his family, his health care team, and his passion for helping others battling illness with keeping him focused on the future.

An important part of Mark Silverstein’s day is his morning ritual of making coffee for his wife Nelia at their Aurora, ON home. For most people, it would be a small gesture. But for Mark, it’s a precious window of normalcy in a life that’s often overshadowed by illness.

Chronic lymphocytic leukemia (CLL) is a cancer of the blood in which the bone marrow produces too many abnormal lymphocytes (a type of white blood cell). Although it is a leukemia by name, CLL behaves, and is treated, like other slowly progressing lymphomas. Approximately 2,200 people in Canada are diagnosed with CLL each year.

Now 54, Mark has been living with CLL for the last nine years. His journey has taken him through multiple rounds of therapies, several relapses, a bone marrow transplant, and, most recently, a third relapse. Mark credits his wife and care partner, Nelia, his hematologist, Dr. Peter Anglin, and biomedical innovation for keeping him one step ahead of the disease.

Stronger Together: Mark’s journey with CLL

Finding solace in service

Living with CLL proves both challenging and frustrating. “Every day, there’s something going on,” he says. “I had to work hard, and not always successfully, to accept that my body doesn’t work the same way it used to. I can’t do all the things I want to do.”

But the disease has also given Mark a renewed purpose in life. After his first line of treatment, he joined a group program to help him through the emotional challenges that accompany living with a chronic disease. It was here that his therapist encouraged him to pursue a career in psychotherapy.

He took her advice and is now a registered psychotherapist building a private practice. He also continues to volunteer his time with cancer support groups at hospices in Aurora, King City, and Richmond Hill. This September, he started a CLL-specific support group at Wellspring Westerkirk House on the Sunnybrook Hospital campus.

A lesson in perspective

“I’m a little unique in that I bring to my patients the experience of having gone through the emotional challenges of a diagnosis,” says Mark. “I have a strong foundation of how to manage the fear, stress, and grief that often comes with a cancer diagnosis. Even if they may know people with cancer, most people can’t fully understand the impact it has on the entirety of one’s life.”

While it’s emotionally challenging, the rewards are fulfilling, he says. “People come to a group very closed off and traumatized by their diagnosis, but they eventually open up and become more vibrant. It’s a wonderful thing to be able to help people going through such a traumatic period in their lives.”

An equally important outcome is that his work helps him transcend his own feelings, Mark says. “As bad as I might feel on any day, I see others who are going through relapses or who have only a short time to live. It’s a reminder that I’m fortunate and still able to find a great deal of meaning in giving back to others.”

In sickness and in health

Living with CLL has also taught Mark that the disease is as hard on the partner as it is on the patient. “Not only do they have additional responsibilities, they have to carry the stress of having to watch the person they love being ill,” he says.

Recently, Mark and Nelia decided to test his boundaries and take a road trip to eastern Canada. As part of his constant pursuit of normalcy, Mark insisted on sharing in the driving duties. “It was a spiritual quest for me,” he says. “I wanted to challenge myself and overcome some of my fears. Part of that challenge was also accepting my limitations. It turned out to be a beautiful adventure and a worthwhile learning experience.”

Mark says he has been beyond fortunate to have Nelia by his side, both in their travels and throughout his cancer journey. “She has not only had to support us financially but has also taken up the slack on things when I could no longer do them,” he says. “When I was having my transplant, she took two months off to be with me every single day at the hospital. When I’m not feeling well enough to discuss things with my doctor, she takes over my self-advocacy. I can’t thank her enough for all the things she has done for me and for us.”

A message of hope opens in a new window

Mark’s tenacity and willingness to push boundaries also shines through in his relationship with his hematologist. At each visit to the Centre, he comes armed with the latest research to proactively discuss his treatment options.

“Mark strikes a good balance between learning on his own and working with us to consider options,” says Dr. Anglin, Physician Lead of Medical Oncology at the Stronach Regional Cancer Centre in Newmarket. “His proactive approach can make for very interesting and stimulating conversations.”

Dr. Anglin notes that a CLL diagnosis once implied the absence of a long-term cure, however newer treatments are offering renewed hope for many patients. Even with the variety of treatment options available, quality of life is at the heart of any conversation between a patient, their care partner, and their specialist. “It can mean different things to different people. Some options involve combination therapy for a finite period, others are oral for a prolonged period. Some patients may want finite therapy, others a continuous one. Patients should know all the options and discuss them before choosing.”

For Mark, choice and control provide an anchor in an otherwise uncertain life. “The neurologist and psychiatrist Viktor Frankl once said, ‘The last of the human freedoms [is] to choose one’s attitude in any given set of circumstances.’ I may not have a choice about my cancer, but I can make choices about my treatments and how I use my time to help others.”