Though I never asked her how old she was, I know Nancy was close in age to me, graduating from high school in the same year as me. Her daughters are slightly older than my daughters. She was a fellow long term survivor of Hodgkin’s Lymphoma, like myself. Also, similar to me, she dealt with a lot of serious health issues related to her treatments for her Hodgkin’s. That is where the similarities will end however. Last week, as has happened with so many other of my fellow long term survivors, Nancy passed away, apparently suddenly. It had been oddly noticed by several of us, that she seemed to be going about her day (as normal as she was able to), as she completed her “Wordle” puzzle and posted her results.
Some time after that, I had begun receiving messages about Nancy’s passing. Clearly, all of us shocked and saddened by someone who not only had so much to offer, but gave everything she could to help all of us. I never got to meet her in person, but she had always offered support to me with all of the surgeries I had faced in recent years, and of course, encouragement through my divorce.
Besides the comfort of knowing that Nancy is no longer struggling with the health issues from her Hodgkin’s past, there is an unbelievable outpouring of kind words being offered by so many, fellow survivors, friends, and family who truly tell the story of who Nancy was, and what she meant to all of us. I would like to share some of those comments (presented with anonymity for privacy reasons).
“So kind and generous…”
“Her legacy will live on through her advocacy…” (besides being involved in peer support with fellow survivors, Nancy was a board member of Hodgkin’s International, a non-profit dedicated to education, advocacy, and support for patients and survivors of Hodgkin’s Lymphoma)
“Someone like me…who understood (what we go through as long term survivors)…kindred. Her faith and patience and wise words calmed my mind and heart often in tumultuous times.”
“A strong spirit… wonderful outlook on life.”
“Grateful for the gift of her in our lives.”
“A beautiful friend.”
“She was good at keep track of us…”
“A big loss for our community.” (her participation on our support pages was invaluable and irreplaceable)
There are literally hundreds of kind and beautiful words and sentiment being offered for Nancy and her family. The grief of her fellow survivors and friends can only mirror in comparison to the family that knew her best and forever in their hearts.
To my fellow long term survivors, each survivor that passes is hard. The upside to having been blessed to know Nancy and having been touched by her kindness and support, is that when the time came, we feel the loss, and yes, we find that we too, may question our longevity. But if there is one thing that we can not only remember Nancy for, but honor her, in that we need to continue what we do every day, for every day that we get to have. Sure, we know the many circumstances we must deal with, but Nancy showed that we can also enjoy life each day, one at a time.
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.
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.
Paul's Heart 