Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2023”

16 Mar 2023
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When The Quiet Part Gets Said Out Loud


A message from me… I actually wrote this post a couple of weeks ago. But events kept happening, making me feel it would be inappropriate to publish this post at that particular moment. As it turns out, the timing could not be any more relevant to understand the reality of a long term Hodgkin’s Lymphoma survivor. As this is being posted, my thoughts are with many survivors who are struggling with their survivorship as their bodies are forced to endure even more trauma. One survivor has spent more than 200 days between hospitals and long term care facilities recovering from his heart surgery. One survivor has spent more than two months in the ICU recovering from his heart surgery. Another survivor is heading into her third week recovering from her heart surgery, still hospitalized. And just yesterday, a fellow survivor was rushed to the hospital, in critical condition, a situation, just like the other three survivors, all created by the treatments for Hodgkin’s Lymphoma that we were exposed to decades ago. This post is about our reality. This post is about not being all Pollyannic with denials of “you don’t know that for sure,” or blanket “you’ll be fine if you just don’t think about it.”

I always say that if my words reach even just one person, then my efforts have been worth it. So, I hope you read this post, and come away with understanding, just how some of us long term survivors of Hodgkin’s Lymphoma, struggle with, and deal with, what we know, and many accept. We have to. Otherwise there is so much we would miss.

There is an expression, “saying the quiet part out loud,” used by Mr. Burns in an episode of the Simpsons (“A Star Is Burns”). This is a reference to revealing one’s thoughts currently in the head, that should be kept there, instead, spoken for anyone within ear shot to hear. You hear the phrase used quite often today, especially in politics, when a particular political party representative, in discussing policy, accidently reveals their true intentions, admitting either their knowledge or attitudes toward a particular agenda.

But in the world of long term cancer survivorship, “saying the quiet part out loud” has a different meaning. It is something that rarely if ever gets talked about, recognizing our increased mortality. I want to caution you, while the subject infers something quite uncomfortable, something normally kept quiet, unsaid, as a recent event showed me, it really is not all that bad. I want to stress, this has nothing do with manifesting anything to happen, or shouldering any bad juju.

I was participating in a Zoom session, with the guest speaker having been a fellow long term survivor, offering her perspective of survivorship. There are so many of us living decades after completing our treatments, and I know many of them over thirty of my thirty-three years of survivorship. We all have different experiences. In this case, the guest speaker said something, I can say I at least think of every now and then, though I do not recall ever hearing it out loud. As I heard it, I felt a powerful wave of relief come over me. For the first time, I knew someone felt as I did, that my feelings were normal. I had just never heard it before from someone else.

I am paraphrasing, “I know that my life expectancy is going to be less than I hoped, and I am okay with that.” The speaker was making reference to the fact, just as I an other long term survivors of Hodgkin’s Lymphoma, that she had developed late side effects from the treatments that gave her remission. The body can only handle so much trauma. She, others, and myself, have gone through similar and different experiences, many severe, many life threatening. And each issue, the risks of complications and mortality increase.

Anyone who has ever heard me talk about this, usually responds with the typical, “you don’t know that” or “you’re fine, you’re going to live a long life.” Exposing myself, I risk being ridiculed with, “don’t be a negative ‘Nelly'”. The worst comment you can make to me, “you’re living your life in fear, how awful.”

To be clear, I am not talking about dying, or actively dying. You have likely heard at some point in your life, “smoking cuts so many years off of your life,” or “too much cholesterol can result in less years,” etc. No one every really questions statements like that because of where that information and support comes from. But when you receive forty times the lifetime maximum exposure of radiation, or the most toxic of chemotherapy drugs (especially a drug that was used to kill thousands of people by Sadaam Hussein during the Iraq War), it only makes sense, that these treatments will have an impact on longevity.

In my 33 years of survival, I have met so many fellow survivors, some in person, and some through the digital world. Now I should preface the rest of this post. I honestly do not know many long term survivors of Hodgkin’s who are not dealing with late developing side effects. And there are two potential explanations. The first, people only reach out for help or answers, when something is wrong. If you do not know you have these issues, then you have no reason to look for others like myself. The second possibility, a survivor might actually be someone who has not developed any late side effects, or at least associated the unusual and unexplainable ailment they might be facing. And this is an important acknowledgement in my post. Here is why.

Twenty or so years ago, when I first came on to social media, the majority of my time spent on line, pertained to helping patients who had been going currently going through treatments for Hodgkin’s, not so much long term survivors. A reminder, I myself, did not know I had been developing late side effects yet at that time. Following the first crisis event of my survivorship, my emergency open heart surgery in 2008, I turned my attention to long term survivorship care and knowledge, while sharing time with current patients.

I had remained in communication with many patients who had “moved on” with their lives, against my advice, after hitting the “magic 5 year mark,” and saying good-bye to the cancer world forever. As years passed, it became more apparent to me, just how prominent these issues really were in survivorship. But for those who chose to move on, I kept my conflicted emotions to myself as those survivors shared their “new life” experiences, many exploring places that they, or I, had ever seen.

Then, I would see a post come through for a page, not from the survivor, but a family member. Someone had died. They were out doing one of their nature hikes, as they had done often before, and had a heart attack. In the example I am setting, which really happened, he was only in his 30’s, younger than me when I had my first heart surgery. But he was fit, active, and too young to die. There was never an answer as to what may have contributed to his passing, but those of us who have been in this survivor world, know the likely contribution, was the high and toxic doses of cancer treatments, unmonitored.

Another situation that increases our risks of long term survival, are spontaneous events, such as a car accident, or dare I say it, a pandemic. Those of us exposed to such toxicities, need to realize our bodies have been traumatized, leaving ourselves as able to fight and recover from any particular situation, even as simple as a stumble and fall, the way someone who had not been exposed to cancer treatments. One survivor I knew, had been in a car accident, suffered a head injury, with bleeding. She had actually recovered enough to be ordered released from the hospital, only to suffer something else that had occurred during the recovery, and died.

Then of course, there are the procedures after procedures that many of us endure. If we survive long enough after a particular correction (such as a heart valve replacement), to need it done again, the risks become even more complicated, making recovery more difficult. What would normally be a few days in the hospital recovering, could end up months between multiple facilities healing, hopefully. It is hard going through any surgery for a long term survivor once, let alone again, and again. And if we are dealing with doctors who are unfamiliar with our situations, the risks skyrocket.

Finally, there comes a time for many of my fellow survivors, their bodies just simply have enough. The trauma to the bodies over the years, just too much to handle anymore.

Many of my fellow survivors share a “memorial” page, where we have photos of those long term survivors who have come into our lives, and passed. Their passings could have been due to complications of procedures, spontaneous non-cancer related occurrences, or simply, their bodies just had enough. It is a beautiful page, with wonderful photos of a special time, showing how in spite of all that they were going through, they enjoyed every day that they could.

I know this post has been hard to read. But this is the life my fellow cancer survivors and I live. And with that, comes the acceptance part, that we know that we may not live as long as we once thought. We do what we can to take care of our issues that come up, and we hope for the best. We do not spend our days, waiting for the end. I have things that I still want to experience in life, mostly with my two young daughters. I do not put the pressure of long term goals on myself, but I go to bed each night, with the intention that I will have tomorrow, not worried that I might not see tomorrow, the cliche “one day at a time.”

It is the acceptance that I have found, that allows me to not live my life in fear. And that is why, it is actually hurtful, when I get told “you don’t know you will die sooner” or the denial “oh, you’re fine.” Though clearly I wish things were different, I am actually in a good place, comfortable with my fate, and what I have been able to experience in over 33 years, that had I not opted to go through the treatments, I definitely would not be writing these posts today. But that is why, it is oh so important, that you accept how I feel, not try to talk me out of. Do not feel sad or worried for me, because that is not my intention for writing this post. But I do want you there, for all that I still am able to experience in life.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
14 Mar 2023

The Day I Became A Dad (For The First Time)


Next to losing hair, the most upsetting thing about going through cancer treatments for many patients, is the ability to have children. Being able to have biological children going through the cancer experience can be affected in multiple ways. Stress alone has the potential to drive down the body’s ability to produce what it needs for its part in the procreation process. And of course, there is the toxicity of the treatments, chemotherapy or radiation, that can play the ultimate role in whether or not, biological child rearing is possible.

A separate issue of course, is when someone is already pregnant, and the decisions that need to be made as far as continuing treatments, beginning treatments, stopping treatments, or if necessary, aborting the pregnancy.

For the purposes of this post, I am referring to the male situation, post treatments.

Prior to beginning my treatments, I submitted to fertility testing. I was encouraged to do this, as I was only twenty-two years old at the time, too young to really know what I wanted in my life other than beating cancer, but this step could be critical depending on side effects from my treatments. Unfortunately, fertility testing back in the late 1980’s was fairly “plain and simple” in methods, but came back, that I had no amountable sperm worth making storage worthwhile. Spoiler alert, had I known what would happen after my treatments were completed, I would have paid whatever I had to, just to store a single sperm. Hindsight is always 20/20.

Though I did not have the internet to rely on, I did hear stories of other survivors who had gone through similar treatments, and were still able to have biological children. I was told not to give up.

But it was soon after I completed my 8th cycle of chemotherapy, a study had been made public. One of the drugs in my chemotherapy cocktail, was a main culprit of sterility, Mustargen. This drug is highly toxic, but crucial when it came to treating Hodgkin’s Lymphoma at the time. To give you an idea badass this drug is, one of its alternative uses, when synthesized in gas form, was used in World War I as a chemical warfare agent. Though it was banned, that did not prevent former dictator Sadaam Hussein from using Mustard Gas on his own people during the Iraq War. As deadly as that derivative is, it played a vital role in saving lives as well.

The study revealed that male sterility was not only affected by Mustargen, but it would depend likely on how many doses received. I received 8 cycles of the drug. The study confirmed sterility likely at that amount. The study also confirmed that fertility could be spared with six cycles or less. Just my luck, I was only supposed to have six cycles, but it was recommended to ensure my remission, that I go through two more cycles of preventative chemo. According to the study, that was probably what sealed my fate of ever having biological children.

I struggled emotionally with sterility, as I really wanted to be a Dad. I would try other scientific means to have either of my wives (I am twice divorced), get pregnant, also to no avail.

An information meeting on international adoption is what convinced me, how I was meant, and going to be, a Father. A mother had just returned back from China, with her newly adopted daughter, “Lily.” She was such a precious and sweet child, and considering the ordeal of travelling from the only world she had ever known, it was clear that she had adapted to her life in the United States, and clearly loved her mother.

International adoption was the path that I chose to pursue. There would be too many hurdles going through the domestic path especially with my health, and with lawyers wanting to make their paydays. Adoption I would soon realize would help to make my dream come true, becoming a Dad. I would also recognize, that it was not the actual birthing process that was most important to me, but rather becoming a Father. Until that moment arrived, I did not know there was as difference.

Going through China, it did not matter that I had gone through cancer more than a decade earlier. All that mattered to China, was that I was expected to live a long, natural life. Up until that point, nothing was evident to the contrary, at least not for another five years and the creation of “Paul’s Heart.”

But there I was, in a crowded room, with nine other families that I had just met within the prior forty-eight hours. All of us were checking our cameras. Some paced the small area. All of us were waiting for that moment. And then it came. We could hear it, the sound of babies. Soon, ten families would be “born” or at least grow in size. This picture is the actual director of the orphanage where my daughter came from, and she is in his arms. I have to admit, this is not my photo, but one taken by another parent. But it shows the first moment, that I laid eyes on my oldest daughter.

And then, she was placed in my arms. For the first time in my life, I was holding a child, a baby in my arms, not just any baby, my daughter. I was a Dad.

Now, if you are able to feel my emotions at this point, this, this is the moment that I had referred to earlier in my post, the moment of becoming a parent. While I cannot express what it is like to experience or witness actual childbirth, I feel pretty sure, that the emotional realization of the moment that you become a parent, either through childbirth, or adoption, the emotions are the same. The whole experience of the journey to China and back is an entirely full story on its own. But it was soon after my daughter was placed in my arms, I wanted to give my daughter a sister. I would return two years later and go through the process again.

And so, my life went from being told I had a disease that had the potential to kill me to going full circle, not only surviving Hodgkin’s Lymphoma, but, becoming a Father, twice. And though I struggle with my health today, my daughters are my driving force to keep on fighting, no matter what gets thrown at me. No matter WHAT gets thrown at me.

Neither of my daughters were around during my Hodgkin’s days, but they have heard stories, and they have met two very important people in that part of my life, that they can now relate to what it took to get here today, my oncology nurse and my counselor who I leaned on so many times when I was at my emotionally weakest moments.

Today has several important recognitions to me in my personal life. But most importantly, my life changed forever on this date, almost two decades ago, the day I became a Father, for the first time. What a great ride it has been, and what I hope will be many more years to come.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
03 Mar 2023

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!”

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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