Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

A New Normal


There are common thoughts in the journey of cancer and survivorship. From diagnosis through treatment, I know that all that I wanted to know was long term survivorship possible, beyond the five years that I constantly kept hearing about? Strangely, once I completed my treatments, combined with achieving the status of remission, my thoughts quickly turned from long term survival, to when does my life get back to what it used to be, “normal.”

While the cancer experience is definitely physically demanding, enough attention does not get paid to the emotional and mental toll that is taken on the patient. Sure, there is fatigue, fear, doubt, stress, paranoia and more that swirl around in the mind of someone going through cancer. One thing that we do not realize happens during the time from diagnosis through treatments, unbeknownst to us, we lose something very important to us. And we do not recognize it until after we are done with treatments, yet it plays a very important role in us moving on in our lives, in our survivorship, control. We go from doing what we want, when we want, to, you have to be here at this time, we are going to do this at this time, and a patient has no control of that. Decisions are no longer made by the patient, but by those providing the care. And it is in our best interest to do as they are recommending if we want to reach remission.

When we lose things, such as our car keys, our wallet, material things, it produces an inconvenient anxiety. When a loved one is “lost” or passes away, we mourn or grieve. The loss of control then, I feel would fall in between those two extremes. Without any thought, once treatments are over, the “keys” are handed back over to us, and we are supposedly back in control. But why does it not feel that way then? If the treatments and the tests are done, when does it start to feel “normal” again?

Control and normal are two different things, yet combined create an interesting dynamic, an experience that must be dealt with, and accepted. Soon, we realize what that loss of control did, and what it took from us, normalcy. And once we realize what we considered “normal”, and that particular “normal” is gone forever, we soon come to terms, this permanent loss, is similar to the loss we experience when someone passes, and must be grieved. We need to give ourselves the chance mourn what we looked at as what was normal in our lives, before the cancer.

Unlike the passing of a loved one, we have a hope or even a second chance with remission at normalcy, but something we in the circle of survivors call “the new normal.” As a cancer survivor, we all get this new normal, and it is exactly that, new and whatever we want to consider as being typical in our lives going forward.

What exactly is normal? What do you consider normal? What makes things or life normal? If normalcy is based on never seeing doctors again once in remission and totally forgetting you had cancer, nope, not going to happen. That normal is gone. Over decades, medicine has finally recognized late developing side effects as a reality, not necessarily for all, but for some, and the problem is no one knows who will develop these late effects. Therefore, ALL cancer survivors should continue following up with their primary care doctors once they are released from their oncologist, with guidelines from the oncologist what issues to keep an eye out to potentially occur, not definitely, but possibly. That is a new “normal” especially if you are not one to have ever seen a doctor regularly (besides the oncologist).

Aside from the medical new “normal,” I have come to realize that each day brings a new “normal.” And because I am someone who has a variety of late developing side effects, the “normal” for that day depends on if any of those effects are gathering attention or not. What I have found, and actually accepted, is that this is okay. Another new “normal” I have been able to achieve, is how I deal with stress, much better.

Perhaps my most important “normal” however, are my daughters. Becoming a Dad, now decades ago (a surreal thing to say as a cancer survivor), has been the most normal part of my life. There are no quotes around the word normal this time, because you can quote me on this, for me, becoming a parent has been the best kind of normal I have gotten to experience. And each day, I look to build on that normal.

The truth is, normal is what you make it. And that is what makes it “new” after a battle with cancer. Because now, you, the individual are the one deciding what is normal.

Happy Father’s Day


Happy Father’s Day to all who are celebrating today, and my heart goes out to all of those who recognize this day, to remember their Fathers, no longer with them, and for those, who through no fault of their own are kept apart. At one point, I checked off all three of those boxes, so I understand all the emotions involved.

As a Dad of two amazing daughters, this is my day, bigger for me than Christmas, birthday, even my once favorite Halloween. But the biggest part of my life, my legacy if you will, is having made the decision, to be responsible for two children, to teach them values, morals, right from wrong, all the while making sure they learned in school, and became responsible adults. Of course, as you know reading “Paul’s Heart”, this has not been easy with the variety of health issues I have faced as a cancer survivor. But this I know, I do not take any day for granted, and I celebrate every new day that I get with my daughters.

But as I said, I checked off more than one box when it comes to today. I lost my Dad to lung cancer eleven years ago, he was just ten years older than I am now. He was not alive to see what I went through as a Dad dealing with the family courts in regard to the relationships with my daughters. Of all the things unresolved with my father (my parents divorced when I was three years old), my Dad was only aware of the beginning of my own divorce and custody fight, as that was when he was just diagnosed. I could not throw this issue on him, while I dealt with both simultaneously. I am hoping, that my Dad is looking down on me and his granddaughters, and seeing how well things turned out with the my daughters and I.

The link above is for a performance for a special piece that I wrote in tribute to my Dad.

However you are recognizing today, I hope it is a good day for you.

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.

Post Navigation