Trying to live well as a survivor

Nine years ago, when I was diagnosed with Hodgkin’s Lymphoma, I chose to take an active role in restoring my health and quality of life. I empowered myself by adopting and practicing nine tenets:
1. Participate

The medical literature suggests that patients involved in treatment decisions generally have better health outcomes and/or quality of life. I chose to be a partner with my doctors. I got up to speed on my disease and its treatments. When I met my doctors, I didn’t just talk about body parts---I mentioned my feelings, concerns and preferences. I asked questions. My husband spoke for me sometimes.
2. Explore options

Making a treatment decision can be especially difficult if there are many options, uncertain outcomes or significant risks. In my case, the doctors proposed the ‘gold standard’ treatment for relapsed Hodgkin’s Disease. Because it leaves the patient without an immune system for 10-14 days, I wanted to be certain that the treatment was right for me.
I was fortunate because my doctors supported my request to have additional options and because I had the wherewithal and time available to explore them. I took the appropriate, yet agreed to, time to make a decision. I obtained other medical opinions and expanded my list of options. Talking with the doctors about the options helped me adjust my expectations of what the treatments could realistically deliver, i.e. cure vs. remission vs. control. At the end of the exercise, it was clear which treatment was best for me. By the way, it was the one that the doctors initially proposed. Exploring and assessing options helped me “buy in” to the proposed treatment.

3. Commit

I committed to my doctors to follow the treatment plan. I followed their directions on infection control, activity level and medications. I got their approval before undertaking any complimentary therapies. I did everything I could to improve my chances of success.

4. Set goals

I set goals to regain a sense of control during the treatments. I got involved again with figure skating and I aimed to become a judge. I set a goal that I would be well enough at my six-month transplant milestone to attend a reception with the skaters of “Stars on Ice” which my husband had arranged. I still smile when I look at the photo of me with Olympic champion Alexei Yagudin!

5. Lead the project

I viewed my treatment as a project, much like a household renovation. I was, after all, renovating my health! I declared myself “Project Manager” of a team of specialists, nurses, physiotherapists, kinesiologists, social workers, psychologists, nutritionists, counselors, clerics and pharmacists. Our team’s objective was to make me whole again.

As “Project Manager”, rather than “Patient”, I viewed my journey differently. I was a leader. As Project Manager, I kept informed to keep my project on track. I didn’t ‘see my doctors at appointments’. Rather, I ‘spoke with my doctors at meetings’. I prepared a meeting agenda to make the most of my fifteen minutes. I asked probing questions to understand and make decisions. When I got test results, I asked about the “next steps”. I followed up if test results were delayed or forgotten.

6. Protect relationships and caregivers

It was my responsibility as Project Manager to look out for my husband. As Caregiver and Advocate, he was an important member of my team. An unwell or distressed caregiver cannot help. To address his fears and concerns, my husband spoke with a counselor at a family support program. My husband and I took a course to improve our communication which had faltered under the stress of the relapse.

7. Treat the body; mind the spirit

When I needed it, I sought support from a therapist, social workers and my parish priest. For me, the diagnosis represented losses of health, life as I knew it, career, identity and self-esteem. For others, it can mean financial pressures, role changes, depression, loss of functioning, etc. I needed help from professionals to deal with my fears, losses and feelings.

My faith sustained me. It gave me strength to know that family, friends and members of my church community were keeping me in their thoughts and prayers.

I joined a support group and programs in the community. I learned coping strategies and shared openly with others in a similar situation. Talk to survivors, not doctors, to learn what it’s really like to live with a particular cancer.

8. Maintain physical fitness

With my doctor’s approval, I joined an exercise rehabilitation program. It was a way for me to measure my recovery. I felt better. A regular fitness routine helped me tolerate and recover from multiple treatment courses and cope better with side effects.

9. Build a “survival kit”

As a lymphoma survivor, I might face multiple periods of treatment and remission. My survival kit includes practitioner coordinates, exercise, diet and nutrition, deep breathing techniques, meditations, mindfulness exercises, creative visualizations and imagery, affirmations, prayers, detoxifications, bubble bath, pictures of cute kittens, jokes, family photos and complimentary therapies. Whatever can help my health, make me feel better or help me cope with the uncertainty goes in the survival kit. Everyone’s survival kit is unique. Hopefully, this blog will end up in someone’s survival kit!

Though it continues to be a lot of work to live by these tenets, it is worth it. I’m happy to say that I am living well as a survivor.