Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Before That Next Milestone


I have a huge milestone coming up in my cancer survivorship of Hodgkin’s Lymphoma. And unlike past milestones, I want to be able to recognize it, and celebrate it, because it really is and should be a big deal. But I have this issue, survivors’s guilt that I have carried with me my entire survivorship. And it is powerful enough, that with each milestone I recognize, there comes a “yeah but” with every recognition.

I have been this way my entire survivorship. Even as I was going through my treatments, I was so hard on myself, unable and unwilling to give myself credit for what I was going through in spite of pleas from my nurse and counselors. No one is tougher on themselves with survivorship than I am. It is even documented in my medical records. I went through lifetimes, that’s plural, lifetimes of levels of exposure to radiation therapy, and the most toxic of chemotherapy, and yet, my attitude was always “someone has it worse than me.” I was not going to allow myself to feel pity or mercy when others I perceived were going through worse. Through my survivorship, this attitude has continued with the various late side effects from my treatments that I deal with. I talk a good game with those who feel their issues are not as bad others, and I remind them, “that does not make your issues any less real, any less painful, any less important.” Empathy, having been there, done that, I feel a level of guilt each milestone, anniversary, or birthday that I get to experience, when others do not. My survivor’s guilt is not in having survived cancer, not at all. I am 100% grateful for all that I have gotten to experience over the years. No, my survivor’s guilt is for all those survivors that I have been blessed to have met in my life, in all stages of their survivorship from treatment to life after, no longer here, some never having even had the chance. That is my guilt. Why me and not them? As I write this, news has just gotten to me of yet another long term survivor of Hodgkin’s has passed. Of the first three survivors I ever met, over thirty years ago, only two of us still remain. A kid of 24 years old, in remission from Hodgkin’s only a few months before he passed away due to treatment side effects. Long term survivors who needed surgeries to address late side effects for their heart, lungs, skin cancer, etc., only to succumb to complications. And there there are those who have spontaneous events that their bodies just cannot go through anymore. I have had my share of time spent in the ICU, on the operating table, 3 heart surgeries and others, pending cancer diagnosis, and my list goes on. Why am I still here, and others are not? Please, do not tell me I am lucky. Luck has nothing to do with it or I would stand on the beach during a thunderstorm or play the lottery.

Over my years, I have heard my doctors and nurses try to encourage me, to get me to understand how extreme everything was that I went through. And I would tell them that I understood more than they knew. But my internal “toughness” was how I dealt with my cancer, and how I deal with my survivorship. As a result, each milestone, every anniversary, and all of my birthdays, I do celebrate with a “yeah but…” I want this year to be different. I want to give myself permission, that it is okay to celebrate as loudly as I can, what a big deal this next milestone will be. And I know there will be so many that want to celebrate with me.

After some thought, I came up with an idea this year to help me to really appreciate this upcoming Friday, while recognizing and remembering all those who came into my life through survivorship, but not here to celebrate with me. I am going to take care of this, as well as some other things before Friday, all that will be left then is to celebrate a very big day.

I maintain a memorial page of survivors no longer with us, who had the same cancer as me, Hodgkin’s Lymphoma. Some survived decades, and some never even made it into remission. I personally knew most of them. They provided inspiration to me. I miss them and wish they were here right now to see this day. And my thoughts are always with those facing surgeries and other medical interventions for the late side effects.

Now for the other part that I need to take care, and release if you will. There has been a lot of toxicity that I have carried over these four decades, and as Buddha tells us, I need to let this go, it does not matter. In fact, it never has. And so, I am going to let it go.

Friends, co-workers, and even family members who turned their backs on me, selfishly disappearing because of fear or the negativity of cancer having come into their life with me in it, even though I was the one facing it. Spoiler alert, I am still here, and you are not. And this behavior has continued as I dealt with all the late side effect health issues that I have faced. I know I sound angry, but it is more of a disappointment. In a time when I needed the support most, many chose to bail. Or worse.

I do not speak of it often, but when I say “worse”, it is not an understatement. For more than a decade during my survivorship, I found myself having to survive something I consider more difficult than my cancer and all of my health issues combined, divorce. Imagine, cancer should easily be one of the worst things a person deals with. But with cancer, at least there was going to be an end, and at least there was a plan to get me through it and the people responsible for getting me through it, I had confidence in doing so. Not so with my divorce. For ten years, I faced multiple players who felt they had a stake in my divorce, and the relationship with my daughters. Friends chose sides. Family turned their backs. All claimed to have my daughters best interests yet chose an involvement that meant to cause only the greatest harm to them, if efforts had been successful to keep my daughters from me, a fate that would have been worse to me than dying from my cancer. I actually have messages from trolls wishing me ill that I have not forgotten. But I cannot help but think, of all those that wanted to watch my daughters grow, when was the last time you actually saw them? Because if you had not turned your backs on me, against me, you would see how wonderfully they are doing, well in school, and beautiful young women. And yes, they love their Dad.

It is not lost on me, I do not take my milestones for granted, each possibly being my last one. I have great doctors who take care of what they see, which leaves only the unexpected to happen. Longevity is not something the paternal side of my family is known for, most barely reaching 55 years old, so that strike is already against me, then you add my cancer and all my late side effects. So I am more than aware of my mortality and how fragile it is. My father as he dealt with his lung cancer said, “all I want to do is reach my 70th birthday.” He passed at the age of 70. I am not making any final milestone announcement because I still have so many to reach.

And that is where I am going to leave this off. My next post, likely on Friday, is going to be about that milestone. I am releasing the things that bear down on me so that I can allow myself to celebrate this milestone. And it will be the best, as my daughters will be by my side, as they always have been.

I Miss These Days


I can still struggle to believe that I am still here, 37 years after my diagnosis of cancer, Hodgkin’s Lymphoma. I remember those early days of survivorship, especially that first year, fearful and scared of my cancer coming back as quickly as I was declared in remission. Symptoms that I had prior to my diagnosis reappeared reigniting concerns of relapse during my first couple of years, reminding me of an imaginary clock, planted in my brain by my doctors, “5 years.” Five years was the magic number I was told if I reached I could consider myself “cancer free.” Thinking of anything longer was not even a thought. I never thought of anything other than living to five years, never about the years after. And here I am, 37 years after that diagnosis. November 1988 to November 2025, there it is, four decades. It seems like forever, and though my memory is not as sharp as it once was, the details of 1988 are still clear as day to me.

While the first third of my survivorship is pretty much unremarkable, as in, it just happened, one year after another, it is when I became a Dad, that I feel my survivorship actually meant something, mattered, made a difference. Out of my 37 years of survivorship, my daughters and the memories we have made, make up 21 of those years.

I have one photo album completed with memories of our first two decades together. Twenty-one years together is a very long time, especially from a cancer survivor point of view. I assure you, these twenty-one years have flown by. There are so many memories we have made with each other.

But there was no bigger impact on my life, than when I faced the fight of my life, a “widow maker” blockage with my heart that my survivorship took on a whole new meaning, and I could feel it, a completely different drive or motive, an increased will to live. It was no longer about just surviving, I wanted to live. I had so much that I wanted to experience with my daughters. And most importantly, I did not want my daughters to experience what so many of their friends had already experienced in their young lives, the loss of a parent.

I remember the looks on their faces when they were finally able to visit me in the hospital, as I was still hooked up to tubes and machines. My excitement and joy to see them after being separated from them for the first time in our lives, could not ease the fear in their eyes and confusion by what was going on. It was only when I finally went home, the path to recovery and a return to “daddy/daughter time” would begin again.

The length of time that I had survived cancer had become a “back burner” thought (back burner referencing where people put their pots on the stove to just sit while the rest of the meal cooks). My survivorship had taken a different direction, now faced with dealing with late developing side effects from the very treatments that treated my cancer. My care as a survivor would take a different direction, and would not only be more involved, but more active as my first heart surgery would not be the only issue I would face in the rest of my life. In fact, there would be many more.

There is an expression among many of us in the cancer community, “not letting cancer define us.” This basically means, not letting cancer, or in my case, the many late side effect health issues that I deal with, take away from what is most important to me, my daughters. I acknowledge that I need to take care of these issues, but I must also pay attention to the needs of my daughters, and the time, likely reduced and limited that I will have with them. And clearly, if I do not take care of my health, that time will be even less. There is a need for balance between the two.

But here we are now, both of my daughters, now adults, are set to make their own paths. And there is so much I want to witness of their futures. I know they want me to be there to see all the things they do.

There is so much life after cancer. It is just hard to see that far ahead, but before you know it, that future is behind you, and you find yourself wishing to have those times back.

This Year Feels Different


I really cannot explain it. I can normally feel what time of year it is as Thanksgiving approaches. It is a time that I normally dread. For whatever reason, this year feels different.

Keep in mind, the details that I am going to write, are as fresh and clear as when they occurred, back in November of 1988. I was twenty-two years old. I had a good job working for an appliance parts distributor. I was engaged to be married. Everything was going great. And then it wasn’t.

I was sitting at my desk, when I had an itch behind my left ear. As I scratched it, I realized that there was a lump at the base of my skull where I was scratching. I saw my family doctor who felt I had a cold, and this was just a swollen lymph node. After a course of medicine, the node went down in size, but then I developed pain which led me to another doctor. And it was this doctor who put me down a path that would change my life forever, that is, once he could convince me, that his hunch was correct. While today I consider myself a good advocate for my health, back in 1988 I was my own worst enemy with as much denial as I threw at not just that doctor, but five more denials with doctors that followed. Six doctors in total, all in agreement, made the recommendation that I get that lymph node, now swollen back to its size when it was discovered, just might be cancer. All of the doctors from general practitioners to sports medicine to an oncologist (I had no idea what that was when I had my appointment), wanted the nodule biopsied, which I finally agreed to.

It was the Monday before Thanksgiving when I had the biopsy done. Bloodwork and x-rays showed nothing to this point, and I felt the doctors were also wrong, and the biopsy would confirm that. And that was the beginning of my disdain for this holiday period around Thanksgiving and Christmas. The biopsy revealed that I had cancer, Hodgkin’s Lymphoma. Definitely nothing to be thankful for.

I go into more details in my book. Today I want to go in a different direction with this post than what I have in years past. Like I said, this year is different for me.

It has been thirty-seven years since I was diagnosed with Hodgkin’s Lymphoma. I remember every conversation, procedure, treatment, side effect, and struggle. I remember every heartache of friends who “disappeared” rather than stay in touch with someone who had cancer. I remember the fights against discrimination and for health care. I remember being treated like I was not going to live even after I was told I was in remission. I remember every detail, vividly. This is what makes it so hard for me each year around this time, I have never forgotten what I have gone through. My story is not unique. So many have their own cancer story, many stories worse than I faced.

But this year is different, and with a purpose. Not considered a milestone or even a rounded number, for some reason, year thirty-seven, I have a different outlook (and I do not know why), and I have a message I want to share for anyone going through cancer, or regardless if in the early stages of remission, or in long term remission. Life is good after cancer.

One thing that a cancer patient is not told by their oncologist, and I really wish would be told, as mental health is just as important to beating cancer as the chemotherapy or radiation therapy, all a cancer patient wants to do is get through treatments, and then get back to their lives, picking up where they left off. The reality is, there is no going back to the life that was. And that is not necessarily a bad thing. Once finished with treatments, a cancer survivor begins their life anew, creating a “new” normal. In fact, I can say, I actually have begun several new normals throughout my survivorship. My point is, my life never returned to what it was and there are times that I miss that past life. But my life what it is now, is what it was meant to be, and as of right now, has been exactly what I wanted. And I definitely want more.

The fact that I have been blessed for four decades to witness the amazing progress in diagnostic and staging processes, and newer theraputics in the treatment of my cancer that everything that I went through, which is now obsolete or at best, rarely done anymore. I underwent brutal and invasive procedures such as the staging laparotomy and lymphangiogram and the bone marrow biopsy just for staging purposes. Oh how I wish we would have had the option of the PET scan back in 1988.

Or how about the option of the port for chemotherapy as opposed to being stabbed repeatedly trying to insert the IV needle into veins being destroyed from the toxic chemicals? I did not have that option. And today I am a nightmare for any tech trying to get blood from me as I have no working surface veins for blood draws or IV placement.

And then, there are the treatments. Even back in my day, the amount of radiation and the toxicity of the chemotherapy, it was believed could actually kill us. This was justified because without treatment, we would die anyway. But now medicine has figured out how to treat more, with less, less radiation and newer methods such as proton versus photon, and the elimination of many chemicals once respected as “the cure” but at the ultimate cost, to a standard regimen now used for decades, a lesser toxicity and providing similar results or better for remission.

So let’s talk about life after cancer, long after cancer since it rarely if ever gets any attention. I have accomplished so much in four decades. As I said, nothing like my life before cancer. I finally found a career. I bought my first house. I travelled all over the country and even travelled to the other side of the world to build my family with the adoption of my two daughters. I wrote a book about my life with and after cancer. I dabbled in local politics running for our local school board. And I had the best dog.

I never liked being referred to as a fighter or warrior. I never asked to be put into this position. I was literally thrown into it challenged to survive or die. I was not brave or courageous to go through all the procedures and treatments. I did what I needed to do just as I do today when I am faced with one of my late side effect issues. Each time something comes up, I have two choices, I can either sit back and let life just happen to me, no matter how bad, or I can make the decision to push back and fight. I am tired. I am exhausted and fatigued. I am in pain. But to quote the late great Tom Petty, “I won’t back down.” I make the decision every day, I want another day. I go to bed each night, not dwelling on the bad stuff, but preparing myself for what I need to do tomorrow. If I do not wake up, I will never know that things were not completed. But if I do wake up, then I have stuff to do.

If you want to know if someone can beat cancer, if you want to see what life can be like after cancer, much to the chagrin of many, I have been as public as I can be, sharing all aspects of my survivorship, hopefully providing the inspiration that it is intended to do. It is my hope, that whether you follow me on my blog here, or on TikTok, YouTube or wherever, if you have my book or have heard me give a speech on cancer survivorship, I hope that if anything really brings it on in, because as this survivorship number gets higher, it really is feeling different for me this year. And I am actually looking forward to this year’s holiday season without any reservation or fear.

Seriously, how could this journey have begun thirty-seven years ago? I don’t even think I look thirty-seven years old…do I?

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