In honour of World CML Day – September 22 – the Canadian CML Network is featuring the stories of people whose lives have been forever changed by CML. This story comes from Sue Martin, caregiver to Dave Mercer, who had a stem cell transplant in 2012.
Just over a year after Dave and I met, our whole world turned upside down.
We had gone to the hospital to check out what we thought might be a digestive problem, and left with a diagnosis of leukemia. Scared, angry and a bit dumbfounded by it all, we – in true Type A style – tackled the disease head-on.
After two years of drug therapy, it became clear that the CML medications were not working and Dave began to consider a stem cell transplant. We were stunned to find out that not one, but two unrelated donor matches had been found – it seemed like a miracle (even the doctors said so). This is when our journey truly began.
Within a few months, Dave underwent “conditioning therapy” to prepare his body for the transplant. It was a gruelling process that included intense radiation and chemotherapy. This was the most risky part of the transplant because of the possibility of infection. It also signalled the beginning of what would turn out to be an incredibly difficult recovery process that often seems never-ending. In addition to intense fatigue and a lack of appetite, Dave continues to deal with graft versus host disease (GVHD) which has left him without a sense of taste or smell. Despite these intense challenges, we feel blessed to have made it to the four-year mark, as many are not as fortunate.
We try to approach each day with a positive attitude and a lot of laughter, which helps lighten the load a bit. It has been very difficult to witness Dave’s pain and discomfort, to live with the fear of losing him, and also the ongoing sense of uncertainty – we never quite know what might be around the corner in terms of health changes. As you can imagine, being in limbo is not a very comfortable place for us Type A personalities, so it has been quite a transition to learn to take each day as it comes.
It is often said that positive things come out of negative situations, and this journey has really been no different. We cherish special moments more – a magical trip to Hawaii, attending music festivals, cooking a great meal together (even though Dave still can’t taste anything), making each other laugh, and being with friends and family. A particularly happy memory is when we participated in the Leukemia and Lymphoma Society’s Light the Night Walk. It was a celebration that we had made it through the first year after transplant.
My journey as a caregiver has been not been an easy one, but I have learned a lot. If you are a caregiver, or have one in your life, there are four things that I’d like you to know:
- Take care of yourself. Caregivers are often overcome with stress. Taking care of our loved ones, while managing our “dual” lives of dealing with medical issues and maintaining our daily life, leaves us little time or inclination to take care of ourselves. Make sure you have your own caregiver, even if it’s just one friend you can vent to, cry and laugh with and ideally, talk about something other than illness.
- Ask questions. There are so many information sources available and though it can seem overwhelming at times, it’s important to ask questions and be an active participant in the treatment plan.
- Let go of the “old.” Accept that your life will never be what it was before the diagnosis and work on establishing a new and purposeful reality.
- Network. Find patient and caregiver support groups with people who share your experiences. It is comforting to talk to people who have been through what you are going through, especially if your friends and family are struggling to understand how you feel.
Sue Martin lives in Toronto with her husband Dave, who had a stem cell transplant in 2012.
Are you a caregiver to someone who has had a stem cell transplant, or have you had a stem cell transplant and are looking for support? Contact Sue at sue@stepinmarketing or the Canadian CML Network at email@example.com for details on a new patient/caregiver group.