Paul's Heart

Life As A Dad, And A Survivor

Chasing Mortality

Ernest Hemingway once stated, “write drunk, edit sober.” While Hemingway definitely liked his drink, there is nothing to indicate that he ever wrote with this strategy, referred to today as “having no filter.” The concept is intentional. Take what you are trying to write, remove all inhibitions, and just let loose with your thoughts, organize them later. As a writer, I can have several thoughts in my head at once, and unless I make a note of them all, I will lose at least 25% of them. But with all the thoughts written down, the mind now “empty” or sober, everything can be arranged and edited to make better sense.

I am not writing drunk today, though I may attempt Hemingway’s strategy at some point just as an experiment. But my post still may seem scattered and unorganized today, unfiltered. There will be no editing or “sobering” up. The truth is, I could not be any more clear of the thoughts in my head right now.

I was in the middle of writing a different post, one of reflection, a period of time that has now come full circle for me (and I will finish that post eventually), when the news came across my feed, that a fellow long term survivor of Hodgkin’s Lymphoma had passed away. As I have done for others that I knew, I will post a tribute for her soon. But rather, this post is about the impact her passing has on me, and the many thoughts running through my head.

I believe she was younger than me age-wise (a gentleman never asks) based on the fact that she had children approximately the same as I have (and I started late). But I do believe she was one of many who are ahead of me in survivorship years. As survivors, we shared the circumstances of having to deal with late side effects from the treatments that cured us of our Hodgkin’s. Some of these issues were similar, others were different. The fact is, the news came this morning suddenly, as if unexpected. How can I say that with any amount of certainty? While she was actively dealing with some health issues, and had issues related to her cause of passing, neither seemed of imminent concern at least to some of her fellow survivors. But yesterday morning, as she was known to do every day, she shared her “Wordle” score. Some time after, she passed.

To put my experience in perspective, I have spent nearly all of my 32 years of survivorship, supporting other survivors. Over that time, I have seen having nowhere to turn to for help with our issues to finally having medical resources but limited enough that still too many cannot get the help they desperately needed. Today, there is an actual organization dedicated to support of Hodgkin’s patients and survivors, called Hodgkin’s International, and it really is international in its reach. Not the American Cancer Society, or the Leukemia and Lymphoma Society which are more popularly known which where we survivors are basically ignored, but Hodgkin’s International is finally getting the word out, and the support we have been waiting to have, for decades.

My first experience with survivors passing, came early on. Survivors having these “unusual diagnosis” for someone our age, not necessarily connecting the dots between survivor late effects and what someone was dealing with. Because of this ignorance, some were left unprepared for complications that would arise from even the simplest of procedures like a routine colonoscopy.

Then as the years went by, and more of us began sharing our experiences, enabling us to advocate and educate the doctors we were dealing with, that they were not taking care of a text book patient. If we were lucky, our concerns were listened to. But even if they were listened to, in spite of a surgery or procedure being successful, a last minute turn such as an infection, led to sudden tragic endings. My fellow survivor Peter Perin of New York was the first patient who suffered this fate, and became my reference point, to any doctor that treated me. “You must be prepared for anything, including sudden infections.”

Again, more time has passed. More of my survivors are finding the help they need. Sadly, there are still so many more that do not. But with all the peer to peer support, to share with doctors, at least we are able to advocate for our care, which I believe is contributing to further survival for many of us. Still, if you have followed “Paul’s Heart” long enough, I still say goodbye to so many more.

Which brings me to the final phase of my survivorship at least, when the body just cannot take anymore. Up until last year, I believed survivorship was just a matter of going to doctor appointments, getting our ticking time bombs fixed or monitored, and advocating for ourselves. Sometimes, our bodies just decide it is time. No matter how much we try to prevent, fix, prepare, ultimately, when the body says “that’s all she wrote,” that is it.

Last year, one of my closest survivors of three decades passed away suddenly. She had plenty of issues that she had to deal with, but overall, no one was expecting her to pass away on a day that had different plans, lunch with friends. Yesterday, another survivor, in similar health, suddenly passed.

I have made a huge deal over the last two years about my concerns and mitigative efforts in avoiding Covid19, the efforts to see my children as much as I can, and really just enjoy life. Because, although many feel that me knowing my odds, and living my life based on those odds, is being a negative person, it is really quite the contrary. I have so much to live for, so much more that I want to do. And no matter how diligent I am with my care, my ride could be over just like that. If I can be arrogant at all, it is with this thought, my time will go on, it is not my time to pass on. I will let my body know when it is time.

In reality, I know it does not work like that. Boy do I know that. But I will continue to take care of my late side effect health issues. I will relish every moment I get to spend with my daughters. I will follow the recommendations of scientists who are doing the best they can to get us through this Covid19 crisis, about to flare up again. These are the things that I can do.

To quote Danny Devito from his character “Eddie” in Jumanji: The Next Level, “getting old is a gift.” Yes, I am aware of the things that have been, and are happening to my body. And they are not good. But I go through every day, with the intention of doing all I can to see the next tomorrow, which I know is up to my body to decide, and each day is the best gift I can give myself.

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