• LLS
  • Team in Training
  • Light the Night
  • Man & Woman of the Year
  • Français
  • Donate
  • Menu
  • About LLSC

    Who We Are

    • Mission
    • History
    • Financials
    • Board of Directors
    • Executive Committee
    • News
    • Our Partners
    • Why Support the LLSC?

    Regions

    • My Region
    • All Regions
    • Atlantic Canada
    • BC/Yukon Region
    • Ontario Region
    • Prairies Region
    • Quebec Region

    Contact

    • Work at LLSC
    • French
    • LLS US
  • PATIENTS
    & CAREGIVERS

    Disease Information

    • Leukemia
    • Lymphoma
    • Myeloma
    • Myelodysplastic Syndromes
    • Myeloproliferative Neoplasms
    • Childhood Blood Cancer
    • Managing Your Cancer
    • Treatment
    • Finding a Clinical Trial
    • Facts and Statistics
    • KIDSGETBLOODCANCERS.CA

    Support Resources

    • Contact an Information Specialist
    • Your Life After Cancer
    • COVID-19 Resource Center
    • Self-Advocacy Guide
    • KIDSGETBLOODCANCERS.CA
    • Financial Matters
    • Discussion Boards
    • Caregiver Support
    • Support Groups
    • Online Chats
    • First Connection Program
    • Patient Education Programs
    • Resource Centre
    • National and International Resources

    Education Resources

    • Free Information Booklets
    • Educational Video Library
    • Researcher Video Series
    • Webcasts
    • Podcasts
    • Drug Listings
  • RESEARCHERS &
    HEALTHCARE PROFESSIONALS

    Research Funding

    • 2021 Research Funding
    • 2020 Research Funding
    • 2019 Operating Grant Recipients
    • 2019 New Idea Award Recipients

    Continuing Education

    • Resources for Healthcare Professionals
    • Free Information Booklets
    • Webcasts for HCPs

    Research Programs

    • Academic Grants
    • Research Champions
    • Scientific Review Panel
    • Medical and Scientific Advisory Committee
  • HOW TO HELP

    Team LLSC

    • Charity Challenge
    • Create your Own Event
    • Light The Night Walk
    • School & Youth Programs
    • Team In Training

    Other Ways to Help

    • Ways to Donate
    • Volunteer
    • Wills, Annuities & Planned Gifts
    • Become a Sponsor or Partner
    • Corporate Matching Gift Program
    • Shop

    Join The Conversation

    • Fundraising Webcasts
  • Donate
  • About LLSC
    • Who We Are
      • Mission
      • History
      • Financials
      • Board of Directors
      • Executive Committee
      • News
      • Our Partners
      • Why Support the LLSC?
    • Regions
      • My Region
      • All Regions
      • Atlantic Canada
      • BC/Yukon Region
      • Ontario Region
      • Prairies Region
      • Quebec Region
    • Contact
      • Work at LLSC
      • French
      • LLS US
  • PATIENTS <br>& CAREGIVERS
    • Disease Information
      • Leukemia
      • Lymphoma
      • Myeloma
      • Myelodysplastic Syndromes
      • Myeloproliferative Neoplasms
      • Childhood Blood Cancer
      • Managing Your Cancer
      • Treatment
      • Finding a Clinical Trial
      • Facts and Statistics
      • KIDSGETBLOODCANCERS.CA
    • Support Resources
      • Contact an Information Specialist
      • Your Life After Cancer
      • COVID-19 Resource Center
      • Self-Advocacy Guide
      • KIDSGETBLOODCANCERS.CA
      • Financial Matters
      • Discussion Boards
      • Caregiver Support
      • Support Groups
      • Online Chats
      • First Connection Program
      • Patient Education Programs
      • Resource Centre
      • National and International Resources
    • Education Resources
      • Free Information Booklets
      • Educational Video Library
      • Researcher Video Series
      • Webcasts
      • Podcasts
      • Drug Listings
  • RESEARCHERS &<br> HEALTHCARE PROFESSIONALS
    • Research Funding
      • 2021 Research Funding
      • 2020 Research Funding
      • 2019 Operating Grant Recipients
      • 2019 New Idea Award Recipients
    • Continuing Education
      • Resources for Healthcare Professionals
      • Free Information Booklets
      • Webcasts for HCPs
    • Research Programs
      • Academic Grants
      • Research Champions
      • Scientific Review Panel
      • Medical and Scientific Advisory Committee
  • HOW TO HELP
    • Team LLSC
      • Charity Challenge
      • Create your Own Event
      • Light The Night Walk
      • School & Youth Programs
      • Team In Training
    • Other Ways to Help
      • Ways to Donate
      • Volunteer
      • Wills, Annuities & Planned Gifts
      • Become a Sponsor or Partner
      • Corporate Matching Gift Program
      • Shop
    • Join The Conversation
      • Fundraising Webcasts
  • Partners
    • LLS
    • Team in Training
    • Light the Night
    • Man & Woman of the Year
    Language
    • Français

I am a Patient looking for Disease/Treatment Information related to

Click here to find your local LLSC office
Vous consultez maintenant la version anglaise du site de la LLSC. Pour voir cette page en français, allez à SLLCanada.orgor continue reading in English.
  • Who We Are All Stories Mark Silverstein

Mark Silverstein

Survivor

Toronto, ON

  • Print

The ups and downs of living with chronic blood cancer

 

“Did I hear you right? This is chronic, and it won’t go away?”

Mark Silverstein of Aurora, Ont. vividly remembers asking his hematologist these questions during their initial meeting almost ten years ago. Then 45, Silverstein had just been told the name of the blood cancer he’s been living with ever since: chronic lymphocytic leukemia (CLL).

Silverstein is one of an estimated 22,510 Canadians living with or in remission from leukemia. CLL, a slow-progressing cancer of the lymphocyte cells, is the most common type of leukemia in adults, according to The Leukemia & Lymphoma Society of Canada. The typical CLL patient is diagnosed after age 70, often through routine bloodwork. In some people, the disease may never progress further, while others, like Silverstein, develop advanced disease.

While chronic forms of leukemia like CLL may be slower-moving than other forms of the disease, they present significant challenges for those living with them.

“There are so many different things to grieve,” Silverstein says of life with CLL. “Losing your job, losing what your future looks like and losing control of your body and your health.”

When Silverstein was first diagnosed, the possibility of leaving his wife Nelia alone to raise his two step-children – then 11 and 12 – was a constant fear. As well, Silverstein, who is an only child, worried about the impact on his mother and father. “Putting my parents through that kind of pain is an overwhelming concept,” he says.

The chronic nature of the disease can also prolong the physical and emotional toll. Over the past decade, Silverstein has gone through numerous treatments, including chemotherapy, other medications or “targeted therapies” and a stem cell transplant.

“Treatments are designed to treat symptoms and put the disease into remission for as long as possible,” explains Dr. Mona Shafey, a hematologist and associate professor at the Arnie Charbonneau Cancer Institute in Calgary.

That means seesawing between the symptoms of the disease, which include crushing exhaustion and brain fog (problems with mental clarity and memory) and the side effects of treatment, which range from nausea and infections to shortness of breath. These effects impact every aspect of life, Silverstein says.

“Your sex life, how much time and energy you have for your partner – all these things are affected.”

Chronic disease can also be extremely challenging for care partners. During times when Silverstein has been coping with the disease or treatment, Nelia has had to be the sole breadwinner in the family, taking on the responsibilities of finances and the kids. The family has dealt with lost income due to illness, as well as out-of-pocket payments for therapies not covered by the provincial health plan.

“And it’s not just a blip,” Silverstein says. “It’s a marathon.”

Chronic cancers can often fall off the radar, adding to the burden of those living with them. As part of their commitment to providing guidance and support for people living all types of cancer, The Leukemia & Lymphoma Society of Canada recently hosted a webcast called Living with a Chronic Blood Cancer on their website: llscanada.org. The webcast features Ottawa-based nurse and psychotherapist Bonney Elliott addressing the psychosocial impacts of living with a chronic blood cancer on quality of life, stress and social and family relationships.

“Improved treatments and survival rates mean that more people are living longer with cancer as a chronic disease while dealing with short- and long-term side effects of treatment,” Elliott says in the webcast. “Workplace and insurance company policies, our expectations of ourselves and the social world we live in have not caught up with this reality.”

Elliott goes through the various ways chronic blood cancer can affect patients, from physical and mental effects like fatigue and brain fog to emotional effects like coping with fears of the future. Elliott focuses on practical things that can help when people are living with a chronic blood cancer. For example, she notes that in any time of stress, it’s important to stick to the basics in order to increase quality of life: sleep, exercise, eating well and drinking water.

“These are probably the most important things in terms of staying balanced and healthy and positive,” she says.

While living with CLL does have difficulties – Silverstein is currently dealing with his fourth relapse – he says it’s helped him focus on what he finds most meaningful in life: his family and advocating for other patients and families. After a particularly harrowing experience with a treatment, Silverstein joined a 10-week program for cancer survivors offered by a local hospice. “It really, really helped me,” he says.

The program inspired Silverstein to go back to school and start a new career as a psychotherapist and counsellor. He now co-facilitates both a CLL support group and the program for cancer survivors that inspired him, which is called Picking Up the Pieces.

His experiences have also deepened his relationship with his family, he says.

“There was a time not long ago when I didn’t think I’d make it to 55,” he says, “but I’m here, and I’m grateful for that.”

 

Advertising feature produced by Globe Content Studio. The Globe’s editorial department was not involved.

Previous StoryJuliana Pierotti
Next StoryAva O’Toole
Previous StoryJuliana Pierotti
Next StoryAva O’Toole

Follow us

Newsletter subscription

Subscribe

The Leukemia & Lymphoma Society of Canada (LLSC) is a voluntary health agency dedicated to blood cancers. We provide free information and support services to patients and caregivers. The LLSC mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

National Office location:
804-2 Lansing Square
Toronto, ON M2J 4P8
Charitable Registration#: 10762 3654 RR0001
Phone: ​1-833-222-4884

  • Privacy Policy
  • Copyright
  • Security
  • Disclaimer
  • Work for LLSC
  • Contact Us