Paul's Heart

There Is Life After Hodgkin’s Lymphoma

As Lymphoma Awareness month rolls on, I want to write a lighter piece about Lymphoma, about life after Lymphoma. While I wrote last, that we are never really over “cancer” even when we hear the word “remission,” there is still a life to be lived.

One of my favorite places to visit both as a child and as an adult especially with my daughters, was a place called “Boulder Field” located in Pennsylvania. I spent hours upon hours climbing all over the rocks, never taking the same path, or hiking the same combination of boulders. Each trip was different. It is kind of symbolic for all the different things that would be ahead of me in my life after Hodgkin’s Lymphoma. The ironic thing, prior to my cancer, I do not believe that I was doing much of anything with my life worthy of fulfillment or purpose. I had been content with living a “party” lifestyle that my first wife and I were enjoying. No commitment. No plan. Just show up. That was our “normal.”

But there is a phenomenon known as a “new normal” that cancer survivors experience. Resistance is futile, because it is just something that happens. It would have been easy to pick up right where I left off before the rude interruption from cancer. But with all of the toxicity and damage I had gone through with my treatments, I had to be more careful. A new “normal.” I had follow appointments and testing to undertake as part of this new “normal.” For the first time in my life, at the age of 24, I began to think of other things I wanted to do with my life. And part of that was not to let cancer dictate my new “normal.” This new “normal” was going to be what I made it to be.

A couple of years after my treatments ended, I led our church’s youth group. Actually, this was the first of two that I had been in charge of over ten years. I had done something that other predecessors had not done, and that was open the group to all ages of children, not just the teenagers. Sure, their activities were grouped just as the different levels of school; pre-school and elementary, middle school, and high school. But at least once a year, the entire program came together on a Sunday dedicated to the youth of the church, and all participated and led that Sunday’s services, no adults. The program had all kinds of activities for outreach, and the older kids, the teenagers got to experience road trips such as ski trips and white water rafting. It was an honor to watch these kids grow. In fact, over twenty years later, I am still in contact with several of them, now parents themselves.

I would get an employment opportunity that would change my life forever, working for a major pharmaceutical company in medical research. After years of trying to improve my otherwise mediocre employment situation, and in spite of having no college degree in medical research, after just one interview, I was hired. The job not only provided a much better salary, but something up until that point, since my cancer diagnosis unobtainable, health and life insurance, without being discriminated against. I would actually handle one of the drugs used in my chemotherapy cocktail. But the biggest reward was to be a part of some very important discoveries against several major diseases.

I began to travel. One wish I had was to see my favorite football team, the Seattle Seahawks, play their arch rivals, the Raiders. That trip out west, would change the way I travel forever. For me, the trip became about opportunities. On this trip, I would actually get to meet two fellow Hodgkin’s survivors in person who up until that point, I had only known through emails. Both were a bit younger than me, and diagnosed a few years after my treatments had ended. But I got to see several places I had never seen before, Seattle, Anaheim, Bakersfield, and Lake Tahoe before returning home. From that point on, nearly any trip I made after that, would almost always involve an opportunity to meet other survivors.

But one of the biggest events, which actually happened twice, happened because of the one long term and permanent effect from my treatments, the inability to have biological children. On two separate trips across the world to China, twice I became a Dad. Every day with my daughters has been a blessing, and many times a new experience, likely an experience that never would have crossed my mind such as swimming with dolphins and stingrays, exploring caves, and so much more. Nothing could be cherished more, than being their Dad, each and every blessed day. Both now in their late teens, they are soon ready to go out into the world, and make their own memories, and for that, I am truly blessed as that spectator.

I will only mention this part briefly, well, because it speaks for itself. For over a decade, I have been writing about my experiences as a cancer survivor, whether it be on “Paul’s Heart,” published in various medical newsletters, anthologies, and am currently working on four books of my own. This has led to opportunities to speak in public at various functions as a living, breathing long time survivor of cancer. A frustrating thing for me really, that more of a big deal is not made about us. But perhaps the coolest experience of my writing career, was to have something I wrote performed live:

An unexpected direction in my life occurred back in 2009, when I decided to enter politics, at our local school board level. I was unhappy with the way the current school board had been behaving and many of their decisions, which I felt would have an impact on my daughters educations. And so, I enjoyed the experience of two campaign runs. It was a wonderful and exhausting experience, there were so many memories made. Several long term friendships came from my running for school board, friendships from running mates. I wanted to, and felt that it happened, to make a difference for my daughters educations, which of course would benefit other’s children as well.

The Covid19 pandemic gave me an opportunity to return to something I enjoyed doing, playing guitar and piano again. I won’t ever do it publicly, but I am having a lot of fun again, expanding my musical horizons. Combined with my singing, I even wrote my first song and recorded it, a very cool experience.

No, my life did not turn out at all the way that I thought it would. But then again, I never thought I would get cancer either. But as many put it, “I won’t let cancer define who I am.” I am far from finished writing my story. And to do that, I have to keep living my life after Hodgkin’s Lymphoma and in spite of what it has left for me, just as my fellow long term survivors.