Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

Father’s Day Thoughts

I have made one thing clear to my daughters as they have either reached adulthood, or about to, of any of the holidays of the year, Father’s Day is the most important to me. As I am sure for many, Father’s Day carries many different emotions and feelings. But I define my life, by those three letters, “D” “A” “D”. And as the subtitle of my blog states, “life as a Dad, and a survivor,” “Dad” is the first mention of my two definitions.

I have made many references to Harry Chapin’s song “Cats In The Cradle” over the years. And as the meme suggests, as the song reaches its later verses, reality sinks in. And though I would never have expected Chapin to have added an alternate final verse, as a grown son in his fifties now, I wonder what he would have wrote and sung about life in the end, without “Dad”. As happy as Father’s Day is for many of us, it is also a sad day for those of us who have lost our Fathers, some long ago, some recently.

The life between my Father and I was a complicated one, a tale of two halves, fortunately, the second half being more memorable and lasting. And as I have written recently, I am finally working through at least one of the issues from my childhood with him.

And that brings me to others who are celebrating without their “Dads” for one reason or another. There are any number of reasons a child may not have a Father figure in their life. But none will be more difficult than a child knowing that they have a Father, somewhere, and either the Father has made the choice not be in that child’s life, or, just as bad, a mother choosing to alienate her child from their father. When this happens, while the intended target is the Father, it is ALWAYS the unintended target, the child, who will pay the most for that act. EVERY TIME! This is not only an unnatural act to deny a relationship with a parent, but it is child abuse.

Being a Dad has been one the most meaningful thing in my life. Being a parent does not come with a manual, if you are lucky, you may have experiences that you have witnessed from others that may help guide you.

Just to get to the point of becoming a father was an uphill battle for me with my health issues. Having the title of “Dad” does not automatically make you a Dad. Sure there are lots of fun and laughs watching your child grow, but parenthood also comes with seeing your children experience pain and sometimes heart break. And that can be real tough.

And if that is not hard enough, throw divorce into the mix. While trying to make sure that the bonds between father and child are not stressed or fractured, additional pressures are faced. Unlike my father who made the choice to be distant in my childhood, I promised my daughters I would always be in their lives. And I have kept that promise. With the exception of two Father’s Days early on in the divorce, for reasons I will not go into presently, I have celebrated this day every year with my daughters.

But just as Chapin’s song goes, when our children grow, they have their own lives, and eventually their own children, their own Father’s Days. And that may mean, just the phone call from your daughter or son having to be good enough. The first time that happens will always be hard. But to have gotten to this point in all of your lives is a foundation that can never be taken away.

I have one more Father’s Day yet with a “child,” and then I will have two grown daughters, who will always be my daughters, but may have something going on in their lives which may not allow them to be with me on this day. But I will have Facetime to fall back on, and just to see their smile will be just as good, to bring back all the memories that they have given me over the years.

And with each year, yes, I miss my Dad. I am sure that he is watching, and happy with the young ladies my daughters are becoming. And I am sure he is happy with the Dad I am. I know I am very happy.

Happy Father’s Day to all. And for those whose Fathers are no longer with them, I hope you have fond memories to carry you through this day.

My Daughter’s Graduation – A Milestone I Almost Did Not Get To See

I am not being hyperbolic. To be clear, in April of 2008, I was dying. I was unaware that I had a heart condition, caused by radiation and chemoptherapies for Hodgkin’s Lymphoma back in 1988. Unbeknownst to medicine, if I were to live long enough after my treatments, it was likely my body would develop late side effects, some minor, and some major. My cardiologist called me “the luckiest guy on the planet,” for surviving a condition commonly fatal when medical intervention was not available quickly enough when that massive fatal heart attack, some refer to as a “widow maker” would strike, not if, but when.

My life would be rocked with another near fatal episode, taken out of my home in an ambulance at 3am. I was diagnosed with pneumonia, and I was septic. My body was reacting horribly to the infection from the pneumonia, caused by another one of those late effects from my treatments, and now, my body was fighting itself in an out-of-control and toxic path. Time was of the essence.

I would face several other surgeries and conditions, though not as imminent, but they were to the point that intervention was necessary, or, things could end up badly. In other words, the risk of corrective surgery was less than the event itself (a stroke or heart attack).

No one knows more than me, all too well, what it has meant to me, not just to be the father to two beautiful and intelligent young women, but to be able to watch them grow. It has been fourteen years since that first major heart surgery. I have literally thousands of memories over the years, that I got to have. I remember each and every one of them, when, and where they took place.

The life of a long term cancer survivor has not been easy for me, and to call it unpredictable is an understatement. There was no guarantee that I would live past five years, let alone 32 years. Yet, here I am.

I will never forget the words of the doctor who accepted me as his patient, even though I had never been seen in his network before. “I cannot stop the things that are happening to you. I cannot reverse the things that are happening to you. But we can slow them down. I want you to be able to watch your daughters grow, graduate, get married, and even give you grandchildren.” My daughters were five and three at the time. I just found out that I had escaped a near death experience with my heart, and this doctor was telling me, he was going to be there to help me live long enough to see all these things come true.

Well, here I am at yet another of those milestones my doctor mentioned to me, graduation. We did it. It has certainly not been easy. But in just days, I will see my oldest daughter graduate high school, and the next year, my youngest daughter get her diploma as well. I know how close it came to me not seeing this day. Again, not hyperbole.

But as the memories show, it has been a great ride, and I am hoping my doctor continues to be correct, and there will be many more photos.

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