Paul's Heart

A Tribute I Never Thought I Would Have To Write

Her name was Lynn, but as she would write on her posts to our peer support group for Hodgkin’s Lymphoma back in the late 1990’s, she would write, “Josh’s mom.” Josh had Hodgkin’s Lymphoma approximately five years after my fight with Hodgkin’s. She and I corresponded back and forth multiple times, as she sought answers to cope with the emotional swings her son would deal with, as well as the overwhelming fears associated with getting through treatments, and of course, fears of relapse.

As a volunteer peer to peer counselor with the American Cancer Society, I had already been trained to talk with, more importantly listen to, cancer patients and survivors. But that had always been limited to “in person.” Josh and Lynn lived in California, Bakersfield to be exact.

It was late December of 2000, I had been planning a trip out west to see the Seattle Seahawks football team, play the Raiders over the period of my birthday. As I had never been passed the Mississippi River before, and unsure if and when I would ever make it that far again, I decided to increase the scope of the trip (something I still do to this day), and make multiple stops while I was out west.

I brought up the idea of dropping down from Seattle to Bakersfield to meet Josh and Lynn in person. At first Lynn said to me, “nobody visits Bakersfield.” I told her, “I’m going to.”

And so I did schedule that trip to include not only Bakersfield, but also Anaheim (to go to Disneyland), and a stop in Lake Tahoe, where I would meet up with another family I met on that email list along with Lynn, whose daughter had also recently completed chemotherapy. It was going to be a full week of fun, memories, and put my life in a direction that has been a critical part of my survivorship ever since.

And so, Lynn took me out along with her son, to show me Bakersfield, which included a stop at Buck Owns Crystal Palace which made my father, a vintage country music fan, quite envious. I would also learn about the origin of Bakersfield’s popular rock band, Korn, as they personally knew the lead singer.

That trip had been so powerful from an emotional support angle, I did make it out west again, several times. And each time, our “circle” became larger, as Lynn would get to meet two other families, all with “kids” treated soon after me. And we have all kept in touch to this day, nearly thirty years.

But tragically, our relationship went from peers with Hodgkin’s, to peers with health complications due to late side effects from our extreme treatments that were used. Of the four of us, I was the first to fall to these issues. Once again though, I would be the one they turned to, as “odd” health issues began to pop up for Josh, and then similar cardiac symptoms with the other two, that I called right from the beginning, “widow maker” level concerns with the heart, two of them facing emergency heart surgeries. Just as with my situation, more health issues developed.

Around ten years ago, Josh passed away, a grief no parent should have to face. Though nothing was pinpointed specifically, his late side effects played a role. And even years after his passing, Lynn and I kept in touch. Then a few years later, she would lose another son, undisclosed cause, but not cancer related.

Our group of four got smaller again, as Jennifer, who had survived her widow maker, developed leukemia and would eventually pass. We went from a group of four down to two. Yet still, we all kept in touch with each other. Lynn was a focal point of that effort. No matter what personal event any of us were going through, she was there as a friend with support, after all, she was “mother Lynn.”

So to discover that she had passed recently, there was not a lot of communication even among her family that it had happened, came as a shock. The reality for us long term Hodgkin’s survivors, we know that our longevity is likely cut much shorter than our healthier family and friends. But our caregivers, our personal superheroes, who give up so much of themselves for our care, are expected to live forever. They have earned it.

Sadly, along with grieving for her two sons, she had one son surviving and several grandchildren and fur family members, but she often dealt with health issues of her own, which she rarely talked about. And if she did mention anything, it was because at that moment, it had been unbearable for her. Over recent years, even more cruel than what she had gone through in her short life, she was diagnosed with Parkinson’s.

As an advocate for cancer patients and survivors, I am all too familiar with death. My own health issues related to my cancer treatments decades ago have left me with a known sense of mortality. However, the urgency and severity of several of the events have often left me with a sense of immortality which I know cannot be true. I maintain a memorial page for those who have either passed from Hodgkin’s Lymphoma or its complications. Since its inception, I have placed nearly 90 photos, 75 of whom I personally knew, on that page. Also notable, I am currently older than most of those who have passed. To be clear, I do not think about my passing. I go to bed each night, with plans for the next morning. But I do not take for granted each time my head gets to hit the pillow for the evening.

And tomorrow, I leave for a conference where over 100 other long term survivors will gather, some who I have met in person previously, others I only have known digitally. Having attended these events previously, I know the emotional burst I will feel as we all gather together. While 35 years of survivorship is pretty good, I will meet those in their 40’s and 50’s of years of survivorship for Hodgkin’s.

Lynn will be on my mind this weekend as well as so many others who have passed. She was a great friend. She was a great moral compass. She was a great caregiver. Lynn will be missed.