33 Years And Counting
I really did not need the reminder. But there it was, loud and clear. Of course it was loud, it was my car stereo. I listen to my Apple Music source, which is loaded with over 10,000 songs that I have purchased over the last several decades. And out of those songs, the fact that this particular song came up today, of all days, is more than ironic and coincidental. It is a song that sparked controversy by a controversial artist. It was a song that came out in 1989, the same time I had begun my treatments for Hodgkin’s Lymphoma. In fact, back in those days, radio stations were notorious for overplaying their top songs, and this song was no exception. And I literally heard it, every day, on my way for my treatments, radiation and chemotherapy. Madonna’s “Like A Prayer.”
Today marks the 33rd year, that I took my last dose of chemotherapy, radiation completed prior, for Hodgkin’s Lymphoma. For those that understand, I was staged Nodular Sclerosing, 3b, not the worst stage, but pretty bad. I had completed 30 treatments of a ridiculous amount of radiation that haunts me to this day, and eight cycles (months) of some of the most toxic chemotherapy drugs, most of those drugs no longer used thanks to research and progress. Cancer anniversaries are determined by the individual, some on the diagnosis date, some on the date they are told that they are in remission. I count mine on the date that I finished my treatments.
It is amazing what I have been able to experience over the last thirty three years since. I have lost count on the number of cancer patients and survivors who have come in to my life. I would take on new challenges that I know I never had any original concept about prior to my diagnosis, patient advocacy. I took on a whole different direction in life, of course that was not by choice, and often times, having to fight for rights that I already had, and others that would eventually come. But the most important part of my thirty three years of survivorship, are the two days that I became a Dad.
I did not become a Dad by what some might call “conventional means,” because treatments left me unable to have kids. But the days that both of my daughters were placed in my arms for the first time, produced emotions that occur when a child is born biologically. All I wanted, was to become a Dad. But with cancer survivorship, nothing is certain. Time is not guaranteed. Yet, out of my thirty three years, my daughters have been there for seventeen and nineteen of those years. I got to experience so many things with my daughters, but most of all, I got to watch them grow.
It is hard for many to understand why I just “recognize” this day, and not celebrate it. Believe me, I do not take for granted what my longevity has meant. I know it is a huge accomplishment. But just as there were so many good things to come from my survivorship, so does some bad.
As I mentioned, I went through some pretty bad stuff between the radiation and chemo. Back in 1989/1990 (and before), medicine had no idea what would happen to survivors if they lived long after this magical “5 year mark,” if a patient got to that point. All that mattered, was that a patient got there. With Hodgkin’s Lymphoma being one of the highly treatable cancers, patients would be the first to discover what happened after five years, the hard way. And medicine was not ready for it either.
In 2008, I was diagnosed with a “widow maker” heart blockage, caused by my radiation therapy, requiring an emergency double bypass. The problem, no one was looking for it. Had it not been for my family doctor, on a whim, ordering a test that does not get done normally on a 42 year-old male, I would be dead. Over the years, more would be discovered about the progressive trauma my body had developed. This condition is not reversible.
The other thing that prevents me from celebrating, is the loss. Over the thirty three years, I have known too many who did not survive Hodgkin’s, relapsed – some, several times, and others develop similar late side effects as me. Many, just as I do, are still here, surviving. Others, sadly have passed.
Just this past week, one of my fellow survivors I know, passed away from complications of her Hodgkin’s past.
There is no rhyme or reason for who lives, and who passes. And there is no reason why, given such the high remission rate for Hodgkin’s Lymphoma, that so many should not live long lives, or decide who survives or who does not. This has left me dealing with something known as “survivor’s guilt.” No, I do not feel guilty for surviving cancer. I feel guilty because I do not understand what made my situation different.
In the end, I do not lose sight of what I have gone through, where I am today, and what it took to get here. I do not take for granted of all that I have and what/who means the most to me. I cannot celebrate when so many do not get that chance. But I do recognize that thirty three years ago, I had a choice to make. I made the right one.
And as I do every year on this day, I finish this post with an expression I have shared over and over again. For those battling cancer, “as I travel down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if you are not there yet, hurry up and get there. It’s a great ride!”
Paul's Heart 