Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

19 May 2025
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Lara


When I was diagnosed with Hodgkin’s Lymphoma four decades ago, long before the internet, before I even had my first computer, all I ever wanted back then, was to meet someone, anyone, who had Hodgkin’s as well, and survived a long time. Today, with social media just to name one resource, I regularly meet patients, new survivors, and countless long term survivors, many who are long passed my 35 years of remission. Whether I have met them in person, exchanged texts and private messages, or even just commenting on a personal post, if I have held just one exchange with someone, that moment has had an impact on my survivorship, from inspiration to information, every person whom I have shared words with in regard to Hodgkin’s Lymphoma and survivorship, has been a blessing to me.

My decision to have stayed active in the world of cancer all of these years also comes with a price, experiencing loss. Cancer patients are often given survival statistics of “five year survivorship,” and then are never given any thought of again after that. And only through the internet, did a certain population of childhood cancer survivors of Hodgkin’s Lymphoma, begin to search out for answers, many years past five years, in search of answers to unusual symptoms that had developed, to be discovered related to the extreme toxic treatments we went through decades ago, only to find out, we shared these issues with others. From then on, our numbers of survivors discovering these issues grew exponentially. Not only did we share symptoms, we shared infromation where to find help, doctors who had been studying these issues. Just as important, we supported each other, encouraging each other, that in spite of being treated as if we were hypochondriacs, the symptoms we were experiencing were in fact real. And then, something none of us probably ever considered originally, we shared the same desire to meet others who had gone through Hodgkin’s, we were now survivors who wanted to meet other survivors.

And that is where Lara comes in. I “interacted” with Lara over various peer support groups for Hodgkin’s survivors, eventually getting to meet up with her in person. Like me, Lara was an author, having written a book titled “Scars And Scribbles And The Power Of Crayons,” an unlikely title for a book about a cancer experience. But Lara had a unique way that she wanted to tell her story, about Hodgkin’s Lymphoma, from the voice of a 7 year-old child, her age at the time. She wrote about her childhood experiences, and sacrifices, while going through her treatments, but not written as an adult, but through the eyes of the child.

We got together several years ago, which was easy living aproximately an hour apart from each other. There was an “open” reading at her local bookstore, and she invited me to attend. Actually, she asked me to also participate. I had not written my book yet, had not even thought of it to be honest, so I really had no idea what I would read. So I chose to read the story I wrote for my father, “My Dad Was Just Like Me,” (found on this site). I have been a public speaker my whole life, whether in politics, in religion, or survivorship. This would be the first time I would publicly read something that I had published professionally.

We spent some time prior to the reading, sharing our health backgrounds and experiences in survivorship, and just as she was, always found positive ways to still look forward in life. It was a nice evening. Reading my Dad’s story in public for the first time seemed to give it a different perspective than watching others perform the story as it had been done. I could see why Lara enjoyed this type of activity. Lara’s invitation gave me the motivation to finally write my first solo book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” though it took my long enough to finish it (4 years).

As with many survivors with late side effects, the body can only take so much trauma, and decides it has had enough. It is bad enough going through a cancer experience, but to face it multiple times, or have to deal with the severe late side effects from the treatments used to save the life, is just cruel. But that is often the case with many of us long term cancer survivors.

We lost touch over recent years, likely by her choice as other survivors had lost touch with her as well. This life that some of us live with every day, and participating on various social media pages, can be overwhelming at times, so that when we have a good day, we just want to get away, or if we are having a bad day, there is fear and also possibly a burden we do not want to put on others. As inspired as we can be seeing the stories of other survivors, the risk we expose ourselves by personal involvement or actually meeing another survivor, and then pass away, can be devastating.

Like too many others that I have been blessed to cross paths in survivorship, Lara passed away last week. It is a risk we take when we open up our hearts to meet someone, “just like us,” when, back in the beginning of this history, was all that we wanted. But now, as yet another fellow survivor passes on, many of us, including me, are reminded of our mortalities. While I cannot speak for others, I know personally that I do all I can not to dwell on that, my mortality. Yes, I am all too aware of the flippant “you could get hit by a car crossing the street,” or “slip and fall in the bathtub and break your skull.” But having been exposed to the high doses of radiation and the toxicity of the chemotherapy drugs that I and others were treated with, actually “throws us into traffic” or “greases the tub” to increase the chances against us.

Make no mistake, and this was something I learned from Lara, I go to bed each and every night with plans for the next day. I have plans for my future. I expect my body to wake up the next morning. And at the end of the day, I will be grateful for that additional day that I got. And while there are pluses and minuses with survivors exposing them to additional negative thoughts or grief by personally interacting or meeting another survivor, and yes, hurt when we lose someone, in the end, I am glad that I took each and every opportunity, another lesson in survivorship I might not have thought about otherwise. Best yet, having memories of them in better days, not how their story ended.

Lara was a great friend. Lara was a great inspiration. Lara was a true survivor. Lara will be missed.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects
16 Apr 2025

A Question Of “When”


Of all dates that I recognize, or “anniversarize,” this is likely my most difficult and traumatic, even more so than my original diagnosis of Hodgkin’s Lymphoma back in 1988. At the age of 22, being told I had cancer, has only left me with a surreal feeling, having survived cancer more than thirty-five years, should be filled with many anniversaries and milestones. Not once did I ever allow myself to think of anything other than reaching, and remaining in remission, for the rest of my life.

That all changed in April of 2008, when by chance, I got annoyed with a pain/chest tightness I experienced multiple times a day, for at least four months, and finally reached out to my family doctor. On a hunch, she ordered a “nuclear stress test,” not looking for anything in particular, definitely not what would eventually be discovered. Part way into that test, the testing was stopped as “something” became apparently concerning. Thirty-six hours later, at the age of 42, I was on an operating table having emergency bypass surgery. I was expected to have a triple bypass, but in the end, only had two completed. As my original angiogram above shows, I had what was diagnosed as blockage of the left anterior descending artery (LAD), less nerdy known as a “widow maker.” While I may likely have to explain the physiology of the LAD, you get the idea without explaination, what a “widow maker” references.

That phone call that I made, prevented what could have easily ended up being a fatal heart attack. My doctor making the arrangement for the test instead of me, likely saved weeks or months in delays to be scheduled as most have experienced trying to get something health related scheduled. But it was the comment by my newest doctor, a cardiologist, that jarred me the most I have ever experienced and to this day, triggers my PTSD, even more so that my experiences with cancer. “It wasn’t a question ‘if’ you were going to die, but ‘when’.” At 42 years old, I was slapped in the face with my mortality.

Unlike when I went through my treatments for Hodgkin’s, I did that for me, surviving this episode with my heart, I needed to get through this for someone other than me, two someones.

When I left the house that morning of the test, I said “I love you” and goodbye to my daughters as they were off to daycare and kindergarten. I would see them at the end of the day after school. That never happened. I did not get that chance, because everything was put into hyper motion to get me set for emergency heart surgery the next morning. I was devastated thinking I would never get to see my daughters ever again. I was actually facing my mortality, though for the second time, with the risks involved, that mortality was more imminent this time. At that time, my daughters already had friends who had lost their father, and to cardiac disease. The cause of my heart problem was not the typical cause, but rather late developing side effects from my cancer treatments. That changed nothing in regard to the fact, my daughters could very well lose their Dad. And it broke me that I could not hold them one last time before the surgery and tell them that I loved them. And that seemed to drive me all the more, that I needed to get through this surgery.

The story is a bit more complicated than I can put in one blog post, or what I really want to make this post about. But as you can see, the story has ended happily, not without other twists and turns with my health and other issues. But my daughters still have their Dad, and I still have them, seventeen years later, both now in college, and I have gotten to witness that.

My daughters were too young at the time to understand what was happening back in that time. And conversations were kept to age appropriate information, even when they had been brought into the hospital four days following my surgery, I still hooked up to machines, with tubes coming out of me, it was a necessary reunion to let them know “Daddy was going to be fine.” And for me, I had something inside me that pulled me through this crisis that I did not know that I had. My daughters and my love for them is what got me through this.

Every day, I make sure that my daughters know what they mean to me and they remind me what I mean to them, a bond between this girl dad and his daughters, never to be broken. My daughters believe that I can get through anything, that I am their protector, there for them at any moment of need, and do all I can to prepare them for the world. And as they reads this, I hope they know that from the days they were placed in my arms, they gave me purpose, a reason for living, unconditional, stronger than I could ever know existed.

I do not take for granted all of the extra time that I have gotten with them, the bedtimes, birthday parties, special school dances, and of course graduations, and these are all memories that they are able to have. And as they begin their adulthood, I have more time to be their example of how they deserve to be treated, what love, safety, and respect look like, and how important that needs to be to them.

As hard as this day is for me, I need to write this post annually, just as a reminder, my life did not end with that surgery, it continued. And it is my hope that I get to celebrate more of these years. It is not easy, as I do have other health issues related to my Hodgkin’s survival, but for now, they are all managed and dealt with as needed. And my daughters are now old enough, and there with me every step of the way. And that gives me a whole other level of strength and fight, not just for me, but for them.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
03 Mar 2025

In Between Milestones – 35 Years, Still A Big Deal


When celebrating anniversaries, we make a big deal out of major anniversaries, such as 1st, 5th, 25th, and of course, 50th. In the world of cancer survivorship, many of my fellow survivors and I do the same thing with our anniversaries, though several of us recognize our anniversaries differently. Some will recognize the day that they are told they are in remission, and others, including myself, celebrate the day that I was done with my treatments. The photo above, was taken one year after I was done with my treatment, which means the photo was taken thirty-four years ago. That is right, today I am 35 years in remission!

I think I might actually even look younger today than I did back then.

In November of 1988, I was diagnosed with Hodgkin’s Lymphoma, back then it was called Hodgkin’s Disease. My cancer was staged at 3B, almost as bad as one can have it. I underwent some of the most toxic treatments of chemotherapy and radiation therapy to be able to hear the words “you are in remission.” And though I would get to hear “remission” half-way through my treatments, my doctor wanted me to finish the course, the entire plan of treatments, taking my last dose of medicine on March 3, 1990. That was 35 years ago!

Up to, and including the time I was diagnosed, all I ever knew about cancer, was that people died from it. There was no internet for me in 1988, so all I had to hear about cancer, came from the television news or newspapers, that people died of cancer. You never heard of people surviving cancer. And it was not good enough as a patient to hear about something called a “5-year survival rate,” in spite of this survival rate for Hodgkin’s being well into the mid-80 percentage, at the age of 23 years old, I wanted to live much longer than five years. I believed that I could, especially if the cancer was gone, but I had never heard of anyone surviving long term. At the time, my grandmother was in remission for breast cancer two years, my only reference to anyone surviving cancer. Again, no access to the internet, I had no idea of the inspiration that was out there, people living after cancer, 30, 40, 50 years and more.

But that time would come soon enough, buying my first computer, getting an AOL account, and finding a “listserve” of other Hodgkin’s survivors, some still in treatment, some finished with treatment, and here they were, some who had survived decades. I saw that long term survivorship from cancer could be mine.

There were other things that I learned as time went on, something that even science and medicine were not aware of or prepared for, if we were going to live longer than those five years, that meant that there would be a possibility that we could develop late side effects from the treatments, though what side effects were not known. This was not studied. But this community of survivors I discovered, were sharing this knowledge among each other, and where help with these effects, and doctors who have knowledge of late side effects, could be found. This would come in handy myself, because over 17 years after I finished treatments, the first late effect from my treatments was discovered, in the form of a “widow maker” blockage with my heart, caused by the high dose of radiation that I received. This would be the beginning of many issues that would be discovered over the next 18 years for me. But I want to stress two things, first, not everyone who goes through treatments develops these side effects, and second, as bad as some of these issues got, the proper intervention has given me so many more years, and I have been blessed with so many opportunities and memories.

The fascinating thing is, over 35 years, I have been witness to progress, actually getting to see it, how Hodgkin’s get diagnosed, no more destructive and invasive staging procedures. The toxic and extreme treatments that I and many others were exposed to back in the 1960’s, the 1970’s, 1980’s, and 1990’s, with medicine’s knowledge, those very treatments had a good possibility of killing us, are no longer being used. I can tell you that treatments today are just as effective, and though still not pleasant, are more tolerable and safer. I have gotten to witness this progress.

The best part of my 35 years of survivorship, has been having the opportunity of being Dad to the best daughters a Dad could ever hope for. They were not around for my battle with Hodgkin’s Lymphoma, but from the first appearance of a late side effect, they have been my motivation and inspiration to not give up. There has been so much that I have gotten to experience with my daughters, now both in college, I really did not ever think I would see this day, yet here I am.

I cannot recognize today however, without recognizing others in my Hodgkin’s family over these thirty-five years. First, all of my new Hodgkin’s friends currently going through treatment yet. I hope that whether you hear of me through “Paul’s Heart”, or have read my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” follow me on TikTok, YouTube, Facebook, or Instagram, I hope you being able to follow someone who has been a survivor for four decades to be inspiring to you, that you too will have a long and fruitful life ahead of you.

Then there are all of the survivors that have come into my life over all of these years. I have known many of you nearly my entire survivorship. And even more inspiring to me, is that so many of you have survived even longer than I have, forty and fifty years or more! I do not take any day that I have for granted, but seeing how far you have come, gives me hope that I can see that longevity also.

If there is one thing that remains so cruel, sadly, there are some that are not here with me to recognize this day. Some, their bodies just no longer able to take the trauma of decades of late side effects, and even one, barely getting to enjoy a few months out of treatments. I miss you all to this day. I remember you all and the joy you shared with me while we were able to survive together. I wish there was a rhyme or reason, why we do not have a 100% cure rate when we are so close right now! Though progress has been made in safer and more effective treatments, it is not good enough.

The counter on this page now is set for March 3, 2030, which will mark 40 years as a cancer survivor. That is a milestone I want to reach, and likely, with my daughters, hopefully not the only other milestones I get to witness.

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

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