Men need support facing cancer

For many — especially men — talking about cancer, and the fears that surround it is a non-starter. This is why I was proud to start and lead a men’s cancer group. Doing cancer alone is tough. Today — World Cancer Day — we must remember the drive to share meaning with someone can be as profound as searching for a cure.

I was diagnosed with non-Hodgkin lymphoma in 2013. After beating it, cancer reappeared in my central nervous system. Chemo reigned again until I was told lymphoma remnants found their way into my eyes, requiring 10 chemo injections in each.

When my wife and I met with a doctor at Memorial Sloan Kettering, she told me — after I asked for time to think about a stem cell transplant, “Your cancer is growing and will not wait for your decision.” My transplant happened over eight days. I spent the next 100 days in isolation (except for hospital and doctor visits).

Cancer is indiscriminate. It takes its toll on all.

Today, I am 72. Cancer has been in my life for 10 years. Luckily, it has not been active since 2015. I only see oncologists annually. During treatment, doctors put an Ommaya reservoir under my scalp. It injected chemo into the bloodstream. Due to surgical risks, it can never be removed.

So it is forever a part of me, like the constant and nagging fear of my disease returning. They are natural parts of healing. But as I healed, I could not find a local support mechanism for men. There was no organized dynamic for men like me to talk about disease, treatment, recovery, or the tolls they take on our families and friends.

As men heal and need less care, time for support wanes. Other things take precedence. They choose between loved ones, work, vacations, or — sometimes — dying gracefully.

Four years after my diagnosis, I worked with Sid Jacobson JCC’s Nancy Marx Cancer Wellness Center in East Hills to develop the first all-encompassing Long Island men’s cancer support group.

Randy Hight, the director, hosted a discussion group for all. After a meeting, I told Randy about a meaningful conversation with other men. When she suggested I start this group, I dismissed it.

Randy looked me in the eyes which had been through so much and said, “You are a facilitator, you know how to talk to people. You can do it.” After some research, I discovered the only men’s groups were for prostate cancer.

After calls with my oncologists, I mustered the confidence to start a group. The first meeting was in April 2018, but I was its only participant. I talked to myself enough since getting sick. I scheduled another meeting and one man joined me. Over the next few months, more men from Randy’s group joined. Together, we could do this.

I started our meetings by asking attendees why they joined. I asked them how they felt about their situations and invited them to share details of their diagnoses. Did they have questions or suggestions to share? Did they have partners and how were they doing? If they were alone, with whom did they talk? What were the lessons learned?

Neuropathy confused many of us. We struggled with seeking tips to lessen distress. When participants left the group, we talked it through. When an individual became too ill to participate or passed, how did we go forth with loss? When one of us lost a child to cancer, we were as loving or as supportive as we could be. We progressed to deeply personal questions and the implications of family histories.

We talked about our hopes and our fears as we battled cancer or looked at it in the rearview mirror. It became a place to vent, learn, grow, and socialize with others. It was nothing short of cathartic.

Sid Jacobson JCC’s Nancy Marx Cancer Wellness Center came to life because of naming donor Harvey Marx, whose wife died of cancer. Every year, the community comes together for SJJCC’s annual “Stronger Than Cancer” 5K, which raises money to ensure programs remain free for all, including our men’s group, now in its sixth year.

I am grateful to those who have come with me on my journey from victim to survivor to facilitator. Starting this group of survivors yearning to share our experiences with those who would understand them filled a void I did not realize existed.

It allowed me to appreciate the transformative power of dialogue and connections.

Most importantly, the connections I’ve made show me and others that true healing does not occur in a hospital or a doctor’s office, but in the warm embrace of others who understand what we are feeling and thinking.