Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

14 Mar 2026

What I Learned From My Oldest Daughter


March 14th has two meanings in my life. My maternal grandfather’s birthday was that date, a date I will never forget, because of what happened twenty-two years ago, the day I became a Dad. I need to mention, I am not making reference to my daughter’s birthday, but rather the day she was placed into my arms, and through the adoption process, became my daughter. Those of us in the adoption community refer to this date in many ways, “Gotcha Day” or “Forever Family Day.” So each year, both of my daughters have two dates that get celebrated, their adoption date, and their birthday.

Both of my daughters, now adults, understand how the decision came to be, that I would seek adopting them. Cancer treatments had left me unable to have biological children, and scientific alternative methods were also unsuccessful. If I was going to be a Dad, adoption would be my only option. And once the decision was made, where and from who, on March 14, 2004, the day after I landed in mainland China, my oldest daughter was placed into my arms. I was a Dad.

My experience, or rather role models for fatherhood were lacking, as my parents had divorced when I was three years old. Unfortunately from there, my relationship with my father grew estranged until we had made amends in my adulthood (long story, not for this post). But I really had no role models or ideas what a father was supposed to be like, other than when I would spend time at a friend’s house, and see how their fathers were. I had two main friends in high school that I watched and gained this experience. But still, would it be enough, for the day when it came, that I was responsible for a tiny young being, reliant on me, my responsibility to keep safe, to teach, and to prepare? Sure, I read all of the bedtime stories, went through the Santa and Easter Bunny traditions, helped with homework, and assisted with preparations for college. As adults, I now need to make sure that my daughters learn all they can about the adult responsibilities they will need to handle.

As much as I had to teach her, it was her that taught me so much. Things I would learn from her, her younger sister would benefit from that. As my oldest daughter, it was she who taught me patience. Seriously, as adults, we rush to get to work or to the movies, we expect things to go smoothly as planned, we want things the way we want them. That does not happen once you become a Dad. If she decided she was not going to wear something that I picked out, that was a battle I was going to have to choose if I wanted or not, usually not. And as much as I could plan things out, even with my daughter, if she had other thoughts, that would be extra time being dealt with, no matter what deadline or need was waiting.

And then there was taking extra time, not her, but me. I got a whole new perspective on things and life, through her eyes, appreciating all the things that she enjoyed, and why she enjoyed them. It could be a butterfly, the moon, whatever, each thing that she expressed amazement with, was from a perspective of an innocence I had not thought of.

I believe I always had empathy, definitely a result of having gone through cancer. But I learned to be much softer and more aware of someone else’s feelings, and they mattered to me. So I became a better listener. I needed to hear and listen what she was feeling, because that mattered. Life was no longer just about me, but what she thought of and worried about, mattered to me.

If there is one thing that I have been constant with both my daughters, is that I need to be there for them, I want to be there for them. The drives to school. The anticipation waiting for my daughters to wake up for Christmas presents and Easter baskets. Both have learned that they will always be able to count on me. Of course, they also realize with my health issues from my treatments, those days do not come easy. If there were any regret I have, is that I probably worked too hard, too much, too often. And there would be things I would miss. But I always felt that I was doing good by earning more, to provide more, to be able to do more, until my oldest asked one day, “how come you are never home Daddy?”, a fair question of my 50-60 hour work weeks plus weekend side work. All she wanted, and clearly missed, was time with Daddy.

There is not one moment that went by, too big or too small, that was not an opportunity to enjoy the “little things.” Through their eyes, my daughters taught me the world is a beautiful place. We got caught in a downpour of rain while riding bikes. Who cared?!? My daughter’s love of all creatures, even the lizards and water bugs that found their way into our pool deserved to be rescued.

The one thing I could not learn from my friends parents, was how to be vulnerable, to be okay when it came to being emotional. There was no preparedness to deal with fear and pain my daughters would experience from hospitalizations, to loss, whether it be friendships or family member passings. There have been countless times that both of my daughters have brought out so much pride as their father, that my eyes leaked. And that was okay. As they got older, their needs changed, situations got more complicated, and that meant that we all had to adapt. And that meant more patience. I must admit, I know that both my daughters have me wrapped around their fingers. There is nothing I would not do for them.

And because I always knew that I was being watched, the things I did and said mattered. I am not known for using foul language in conversations. My daughters do not see me drink and drive. I have done what I can to be their role model for when/if the time comes that they get involved with someone, and that ends up for the rest of their lives. I have made sure that it matters to them, that they are as respected as the respect they will give their significant other. They are to stand firm in what they believe, remember the virtues that I displayed for them, as that will make them the best person they can be.

And when it comes to love, and being loved, both my daughters taught me what that feels like and what it means to have that in your life.

Every year, on this date, I think about how my life changed, now twenty-two years ago. And I wouldn’t have it any other way. Not only has she been a great daughter, but also a great older sister.

I heard a very profound quote the other day, and I am paraphrasing, “I have spent most of my life, learning to live with you. And now, I spend my life teaching you everything necessary in life for the time you have to live without me.” And that hits hard as a 36 year cancer survivor with a very complicated health history. My daughters have family and friends who have lost parents. I am no one special to deserve to still be here with all that I deal with health wise, but I do have enormous pressure to make sure that my daughters learn everything they need to not just succeed in life, but thrive, before anything happens to me.

Being a Dad has been one of the most meaningful things of my life, and I have been twice blessed. My purpose in life changed the days that both of you were placed in my arms. I am proud of both my daughters in ways that can never be put into words. Both have great opportunities ahead of them, fearless, strong, and oh yes, determined. My biggest influence on them, is that hopefully I have given them the confidence to believe in themselves as I believe in them. They are both capable of achieving anything they set out to do, they carry my last name. And I hope that I have been the role model to them, that I did not have, to learn what strength is, what sacrifice looks like, and what unconditional love is like, because I know that is what we have, and no one, and I mean NO ONE can ever take that away. When things get hard, and life gets overwhelming, they will be able to hear the kind and supportive voice of their Dad in their heads, that they can get through anything. They are my daughters.

I love you Madison and Emmalie. For as much time as I still have left, and no matter how old you grow, you will never lose this enormous hold and space in my heart. But admittedly, forever you will always be my little girls. And you will never be alone.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
12 Mar 2026
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36 Years In Remission Of Cancer


Nowhere near my next age milestone of 40 years, but I realize being in remission for cancer for 36 years is nothing to sneeze at. In fact, advice that I often give to new patients and survivors, in dealing with remission and survivorship with all the anxieties and concerns of relapses, is to take it, yes I know this will be cliche, one day at a time. And quick math, my 36 years comes to 13,140 days, and that is a long time. When I say it gets easier as time goes on, I mean it. I remember every day of my cancer journey as if it just happened. While at the same time, these 36 years seem to have flown by.

In the 36 years of my remission, the diagnostics used to diagnose Hodgkin’s Lymphoma, no longer used. The methods used to stage Hodgkin’s, such as the laparotomy and the lymphangiogram, are no longer used. The high dose, “scattered field” approach of using radiation therapy to treat Hodgkin’s, is no longer used. And the treatment used before the current standard of chemotherapy, a hybrid, MOPP-ABV (now used ABV-D), is no longer used. I have been in remission long enough to witness all of this progress.

Over these 36 years, I have been discriminated against for employment before the Americans With Disabilities Act was passed making that practice illegal. I struggled to get health insurance due to my pre-existing condition of cancer until the Affordable Care Act was passed requiring that acceptance.

I got married twice, and also divorced twice. I am blessed with two wonderful daughters, now in their twenties, over half of my survivorship, one on the verge of graduating college. I bought a house with a fence, just not white picket, which allowed the dog I always wanted, a golden retriever, to be able to run and play safely in the yard. I had a nice career working in of all occupations, medical research, even handling one of the chemo drugs I had been given. I participated in two school board campaigns as a candidate, the only time I have ever run for a public office. I have travelled to all four corners of the country, and around the world.

I have written and published many stories and publications, and two years ago, published my first book, “Paul’s Heart – Life As A Dad And A 35 Year Cancer Survivor” available on Amazon. I have had one of my stories acted out professionally by actors. And I still have many works in the process.

Music was always a huge part of my cancer journey, but also my survivorship. Whether I was disc jockeying (which I did for 40 years), or performing live vocals, it was the one time I could forget that I had cancer, or at least not think about it. I picked up the guitar and keyboards again, the first time since high school. And of course, I have a huge catalogue of music of all genres to listen and disappear to.

These 36 years have not been easy, or without price. Because medicine never studied what could happen if cancer survivors lived long term, more than the five years we are always quoted, and because we do, for many cancers now, late side effects from the treatments appear in some, not all, cancer survivors. The problem was, there was no plan for this and if it happened. And for those who did develope these issues, decades ago, could not find the care to help with these odd issues, or even how to treat them. But with the coming of social media and the internet, it would be other survivors, and eventually doctors catching on, now finally getting the attention to survivors, that we all should be followed up after five years, not necessarily by the oncologist, but at least by a primary care physician, to watch for something to develop if it does. Again, this is not guaranteed to happen, but if it does, it is important to be dealt with sooner than later. My health history on this page is filled with details of issues I have faced.

And one of the coolest experiences, was getting to reunite with my oncology nurse, my counselor, and my radiation tech, decades later, so that they could see the great thing they did. I know that not all of their stories had happy endings, but for a brief moment, I gave them one memory to remember they saved a life.

And then finally, and as important as my survivorship experiences, are the hundreds of patients and survivors who have crossed paths with me, either through peer to peer counseling, social media, or even happen chance meetings. Each and every person I have met or talked to, is a part of my success of 36 years. There is one downside, I have had to say goodbye to some of my fellow survivors, many way too soon, their bodies no longer able to handle the lifetime of trauma from their experience. Everyone, living and those gone, are all so important to me in my survivorship.

I am hoping, and according to my counter on my main page, that I will have another four years in me, to reach the 40 year milestone of survivorship, after which I will reset my counter to 50 years. I am still hoping to experience so much more. At least that is my plan. I know there is so much more for me to experience.

I cannot donate blood or organs because of my treatment history. I will not discover any cures or treatments, and financially I am not able to give back. So this is why I do “Paul’s Heart.” This is my way of giving back, sharing my private experiences, one reader or follower at a time, hopefully giving the inspiration that I looked for decades ago, and could not find, forcing me to take my fight against cancer on my own. And I hope my story does make a difference.

Stick around, there is going to be a lot more to come.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , , , , , ,
14 Feb 2026

Just Call Me Damacles


(photo is AI generated with ChatGPT)

“Heavy is the head that wears the crown.” This is a line that you may have come across in your life at some point, whether reading Shakespeare, or even listening to the radio, this reference is often made. It references all the things that come with being a King, and not all things are good such as anxiety and pressure. A clearer explanation would be to tell the Greek legend of Damacles, a tale of one man’s admiration for his king and power. The king tries to convince Damacles of the dangers of being king, by allowing Damacles to sit on his throne. The catch is, directly above the throne is a sword, hanging by a single horse tail hair, and that horsehair could give way any moment, without any warning, demonstrating the perils of being king. While this tale can often be told making reference to today’s world and news, it can also relate to the life of a cancer survivor.

When diagnosed with any cancer, almost everyone gets told the same thing, “at 5 years of remission, we consider you ‘cured’, or not likely to have the cancer come back.” Sounds great, right? That’s all a cancer patient wants to hear and do, get to that 5-year mark and beyond. But what happens after that? This is where it gets perilous, just as the sword of Damacles dangling over his head. Sure, great things lie ahead as we are on our “throne.” But there are anxieties and potential perils also. And just as if the sword were to suddenly fall, so too for the cancer survivor.

Before I go any further, I need to give credit to this comparison of cancer survivors to Damacles, to whom it belongs, my doctor. He was the first I ever heard give us patients an explanation what it feels like to be a cancer survivor.

During the first five years of survivorship, the anxieties are real. I still remember everything clearly. Symptoms pop up, similarly to when I was diagnosed. The worry every time a follow up appointment came up or worse, a dreaded scan, hence where the term “scanxiety” comes from, the worry that the scan will show that IT is back. If only it were that easy to remember, that some of the symptoms that we feel, we had long before cancer, and they were just something that happened, which doesn’t mean necessarily the cancer came back. And as for the scans, there is no reason to believe otherwise, not to believe we are still in remission, unless we are told otherwise. But that is what cancer does. It takes away our control, to be able to control and ease our thoughts. Once taken, it is hard to gain back. But I have good news, that control does come back. It will come back. This is where the comparison to Damacles fits. That sword, the fear of relapsing, hanging over our heads, by a single strand of hope, the sword of relapse does not come crashing down on us.

I promise you, this fear of relapse does get better as time gets on. In those first five years, your follow up appointments will get further apart, bolstering your confidence that your remission is getting stronger. Soon, less follow up scans are ordered, and appointments are sceduled even further apart, as far as just annual. It gets to a point soon enough, you no longer concern yourself with that sword hanging over your heads.

Then around that five-year mark, you have a crucial decision to make, and it is entirely up to you.

(photo courtesy of Live Science)

I am sure you have heard the expression, “bury your head in the sand” before. What happens when an ostrich does that? It cannot see, it ignores intentionally, it avoids, anything that is unpleasant or dangerous. And so, as a five-year cancer survivor, you can “bury your head,” and intenionally move on, force yourself to forget you had cancer (in all honesty, that part won’t ever happen), and never set foot in another doctor’s office, or…

You can take it from someone who was once in those shoes, that is not a wise option. It is not necessarily bad, I am just saying, continue to read. I want to stress, I am not a doctor. But I was that ostrich. And for years, as I tried to pull myself away from the world of cancer, it was a fellow survivor who kept trying to pull me back in, and I could not understand why. I was healthy, not like her, apparently dealing with health issues related to her treatments a long time before. This was not my situation. I was not like her. If I was the ostrich, she was the dolphin or meerkat, always looking out or on guard.

(photo courtesy of BBC Earth)

And then one day, that meerkat yanked the head of the ostrich out of the sand. It could no longer avoid the danger. Eighteen years from my last chemo treatment (and radiation), I was diagnosed with what is nicknamed a “widow maker” for obvious reasons, a fatal blockage that normally results in a fatal heart attack without immediate medical intervention. This ostrich, though not feeling great, but with its head in the sand, had developed a condition related to his treatments two decades earlier. And the problem was, no one was watching for it. And for the most part, no one knew to be watching for it, not even doctors. It is not an understatement, that as cancer survivors we are not expected to live beyond five years. Why do I say that? Where do you see any research on long term cancer survivors beyond five years, or maybe ten years now? You don’t. So back when I was treated, in 1988, and the decades before that, late developing side effects were not studied, because we were not expected to live long enough to develop any. But the truth is, we are living longer, and not just from Hodgkin’s Lymphoma, but many cancers. Which means many of us, not necessarily all of us, my develop issues related to our treatments. Science is slowly catching up. The Childrens Oncology Group has published and updates its “survivorship guidelines,” ( survivorshipguidelines.org ), which though its title is a bit misleading, information provided inside can actually apply to ALL cancer survivors as far as follow up recommendations and pertaining to which treatments. Most importantly, it is easy to follow.

“But Paul, you say you have no idea how many cancer survivors don’t have these issues, but everyone you know does have these issues.” Good point to which I reply, “people only seek out help when they need it.” It took eighteen years for my first late effect to become present, and it almost killed me. Whereas, had I kept seeing a doctor, in particular, my primary care doctor, equipped with the knowledge that these late side effects were a possibility, this condition could have been caught years before it was a threat to my life. And that is the difference. I am advocating for you, as a cancer survivor, to not bury your head in the sand, be the meerkat. No one knows if they will develop any late side effect or not, and only a doctor who knows what to watch for, will be able to diagnose it, in time, if it happens.

Anyhow, back to the sword of Damacles.

(picture is AI generated with ChatGPT)

Soon after my recovery from my emergency open heart surgery double bypass, I was encouraged to visit what is called a “survivorship clinic,” a program that specializes in recognizing, treating, and managing late side effects from cancer treatments. Now, if you noticed, there is a second picture, very similar to the top photo of the sword of Damacles. Only this second photo has multiple swords. Yep, you guessed it. In my case, I am dealing with multiple swords of Damacles, each suspended with that one strand of horse hair, perilously hanging over me. Which one(s) will drop first?

I can remember back in the day before everything going digital, my entire medical record being no more than a 1/3 of an inch thick. Even with my Hodgkin’s Lymphoma, my file was not that expansive. But following the first diagnosed late side effect being diagnosed, my medical file would not only expand inches in thickness, a second file would also need to be started to continue on.

I want to list these “swords” for you. I won’t go into the details of each as this post is long enough. But each diagnosis is related to my chemo, radition, or surgery for my Hodgkin’s history. The diagnosis is either in treatment, observation, or watch for further development. Some can be fixed (a temporary thing), some cannot. I will do them by “area”.

Head

  • eyes = macular edema, retinopathy, macular telangiectasis (chemo effects – watching progression)
  • teeth = enamel loss, osteonecrosis risk (bone loss of jaw) (radiation effects – treated as occurs)

Neck

  • thyroid = hypothyroidism, nodules (watching for cancer) (radiation effects – treated with prescriptions currently)
  • carotid artery disease = left artery blocked and stented (radiation effects – being followed)
  • “dropped head” syndrome = muscle loss in the neck causes head to fall forward (radiation effects – observed)
  • muscle loss resulting in “pencil neck” appearance (radiation effects – observed)

Shoulders/Upper Body

  • muscle loss, shoulders look like chicken wings, increased injury risk (radiation effects – observed)
  • radiation fibrosis syndrome (radiation effects – observed)

Heart

  • cardiac disease (chemo and radiation effects – being followed)
  • coronary artery disease (radiation effects – bypass and stent – being followed)
  • aortic valve disease (chemo and radiation effects – valve replacement – being followed)
  • mitral valve (chemo and radiation effects – being followed)
  • congestive heart failure (chemo and radiation effects – being followed)
  • myocardial ischemia (chemo and radiation effects – being followed)

Lungs

  • restrictive lung disease (radiation and chemo effects – being followed)
  • pulmonary nodules (radiation effects – being followed)
  • nodule suspected as indolent adenocarcinoma (lung cancer) (radiation effects – closely followed)
  • have had pneumonia twice, once septic

Gastro (Digestive)

  • Barrett’s Esophagus (pre cancer of esophagus) (radiation effects – being followed)
  • Zenker’s Diverticulum (radiation effects – observed)
  • Hiatal hernia (radiation effects – observed)
  • Extreme reflux (radiation effects – being followed)
  • polyps in esophagus and colon (chemo and radiation effects – being followed)

Endocrine

  • Type 2 diabetes (chemo and radiation effects – being followed)
  • Insulin resistance (chemo and radiation effects – being followed)
  • fatigue (chemo and radiation effects – observed)

Skeletal

  • Osteopenia (chemo effects – observed)
  • Facet joint arthritis L1-L5 vertebrae (chemo effects – observed)

Immunological

  • asplenic (no spleen), more susceptible to contagions (surgical effects – observed)

So now you get the idea of why I picture myself with so many swords over my head. My heart and my lungs are of concern, always, while everything else is on the backburner. It seems like a lot, and it is. But as I stress, not everyone gets these late effects, some only one or two, some have had to deal with more than I have. The problem, like I said many times before, there are so many survivors out there, likely dealing with health issues that just don’t make sense for their demographic, and it is late side effects that are the cause.

As overwhelming as all these seems, I actually manage everything quite easily, calmly, and rationally. I advocate for myself, armed with the knowledge necessary to take on insurance companies when they erroneously feel they are qualified to overrule my doctors. And finally, I know that I have not just great doctors taking care of me, but doctors who are knowledgeable in the care of long term cancer survivors and their late side effects. No, it does not make it any less scary to face these issues, but I know my doctors will do all that they can, and I am at peace with that.

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

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