Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

My 35th National Hodgkin’s Lymphoma Month


“If you are going to get a cancer, this is the one you want to get.” I was actually told that more than 35 years ago when I was diagnosed with Hodgkin’s Disease back in 1988. Though the statement made my blood boil, I initially missed the doctor’s follow up sentence as to why I was so lucky. At the time, Hodgkin’s was considered one of the most treatable cancers, with a remission rate around 85%. Now to be clear, that 85% is to make it to the five year mark. After that, you were on your own. Today, the success rate is even higher, in the low to mid 90’s, but again, that is still for that five year mark. In the 35 years since I was treated, both treatments that I underwent, extreme high dose radiation and the chemotherapy regimen of MOPP-ABV are no longer used, using safer treatments, in lesser amounts, with better results.

(photo courtesy of Amazon.com, available $15 at the following link: https://a.co/d/2JRZsZ3)

In the 35 years since I was diagnosed, so much information and resources have come out about Hodgkin’s compared to NOTHING. Of course, I wrote and published my first book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, detailing my life from diagnosis through treatments, and the decades that followed. Of course, I began writing “Paul’s Heart” the blog more than a dozen years ago. I am even publishing TikTok videos on my history with Hodgkin’s @PaulsHeart2022 .

Social media has played quite a role in getting information into the hands of new patients and survivors, more than from the big players such as the American Cancer Society and the Leukemia And Lymphoma Society. And today, there is an organization committed to Hodgkin’s Lymphoma specifically, with accessability around the world, Hodgkin’s International.

There is so much information available for new patients and survivors, newer and older. Medicine has finally caught up with discovering the need to follow up patients beyond the five year mark. Medical facilities have created survivorship clinics to help patients deal with any late side effects from treatments that have developed. And of course, perhaps the best of all, this world wide web has given the opportunity for patients and survivors to meet others who have gone through what they did, not just online, but in person.

The above photos were from a symposium hosted by Hodgkin’s International, bringing together patients, survivors, doctors, and other medical advocates, to talk, share, and discuss the issues of Hodgkin’s Lymphoma. I was even honored to be one of the panel speakers (I am actually seated next to the doctor who had taken care of me most of my survivorship, as well as another of my doctors at the end of the table).

Yes, a lot has happened over 35 years. Perhaps you have been reading “Paul’s Heart” from day one, and perhaps have read my book. It is my hope with all the efforts that I have shared, that somehow, I have providing you hope and inspiration.

With that said, there are other “awarenesses” this month, of course related to Hodgkin’s Lymphoma. Hodgkin’s is considered a childhood cancer, and a blood cancer, as well as Lymphoma. And of course there is Non-Hodgkin’s and Leukemia. Chances are, these 35 years later, back when I knew noone who had ever had Hodgkin’s, your life has been touched by someone with any one of these cancers. Like I said, treatments are successful, but not perfect. We still need them to be safer, and 100% successful.

A Picture Worth A Thousand Words


If there is one thing I have been constant about on “Paul’s Heart”, it is sharing opportunities and stories of inspiration when it comes to cancer survivorship as I hear about them. There has never been a shortage whether it be recognizing milestones such as 30, 40, or 50 years of remission, or overcoming concerns about future events in life, such as having a family as a cancer survivor. But in all my years of survivorship, 34 years in remission, 35 years of survivorship since I was diagnosed, the following story from start to finish is one I had not only thought I would ever see in my lifetime, but for sure, not expect to see a comeback as strong.

I first wrote about Jessica, a fellow long term Hodgkin’s Lymphoma survivor, just over five years ago (Jessica, The Mermaid That Beat Cancer 4 Times – July 10, 2019 post). In November of last year, she suffered a “fatal” heart attack, surviving the event due to the quick thinking of her clients during their training session, and multiple rescusitations by medical staff. Her only chance of life, and with quality, was going to be a heart transplant, an effort so rare among my fellow Hodgkin’s survivors. Jessica would become the first Hodgkin’s survivor I personally knew, to be given a new heart (there were a handful of other long term cancer survivors who had successfully undergone heart transplants). On December 8th, I wrote A Miracle For Jessica followed by a post on December 10th called Jessica – Marching To A New “Beat”, with the heart transplant having been completed on December 9th.

Well, as is often the case of other survivors I have written about here, I have another update on Jessica.

(photo courtesy of Jetwaterfitness)

This picture is of Jessica, is just eight months with her new heart. Barely nine months ago, she suffered that heart attack, and here she was participating in a very special activity.

(photo courtesy of Jetwaterfitness)

It is called “Dash To Paris.” It is a special athletic tour combining running, swimming, and bicycling from Milan, Italy, to Paris, France, just in time for the opening ceromonies of the Para Olympics. The mission of the Dash To Paris, is to demonstrate support for those that want to be involved in athletics regardless of their physical limits or opportunities.

No participant could have met that description as appropriately and currently as Jessica. Despite a history of four battles with cancer, and later in her life, dealing with late developing side effects from the treatments used to save her life each time, Jessica was committed to physical fitness. She even worked as a physical therapist and personal trainer, which likely not only played a major factor in surviving this last health emergency, her recovery, but enabling her to train for this event. Jessica’s goal was to join the Dash To Parish for the last mile, and finish the Dash.

Joining Jessica was another fellow long term Hodgkin’s survivor, and Jessica’s sister, both who were by Jessica’s side following the heart attack. In fact, her sister was by her side during the last mile.

(photo courtesy of Jetwaterfitness)

There is so much to be inspired by Jessica’s effort and determination. Jessica is more than aware how different the outcome of her story could have been. Most of her fellow survivors are all too aware of how difficult and unforgiving our health issues from our cancer treatments can be. Many of us have seen doctors break in spirit, unable to help one of our survivors any further. But Jessica’s story is not only a special one, it is clearly one that is going to keep adding chapters.

Congratulations Jessica on not only this achievement, but your continued improving health. I am sure that can speak for the majority of your fellow survivors, we are all so proud of you!

The Quiet Place


No, I am not talking about the horror movie. But I am referring to a different major emotion. Yesterday was a day that I had repeated so many times prior, though this time had a much bigger impact on me, the end of Summer visit with my daughter(s) (my older daughter had returned previously).

In the first half of their lives, we had never been apart from each other except for one time, and it was a “biggie,” my emergency heart surgery. Unfortunately, later on, divorce would create what my body’s health betrayal could not do, separate us. In the end, I would become a “non-custodial” parent which meant that my daughters would spend the majority percentage of time with their mother, which is not to be confused with “legal custody” which referred to everything else in regard to my daughters, which was “shared” equally at 50-50. I crafted my own custody arrangement following the disappointing attempt by my attorney. On paper, it was a cooperative agreement, with the intent to avoid conflict especially around holidays, all the while allowing me to have quality time with my daughters.

Because of technology, the absence between us and our visits, I was able to talk to and see them whenever I was able to get through to them, which was suffice in between our actual visits with each other. I can tell you, as an adult child of divorce, I wish my father would have had that option available to him. Technology would have helped him to get around the issues he had with my mother. But that is another story.

So all that was left to enjoy, were the visits, which could be long weekends, or extended visits during holiday or Summer breaks. With each of their visits, it was often like we were never apart. The routines of making meals, doing laundry, taking them places, and just having fun, were no different than when they were younger and when we all lived with each other. But, when it was time for them to go back home, upon me returning home, alone, is when it hit me.

(photo courtesy of statecollege.com)

Silence. Total and complete silence. No one to cook anything for. The televisions was not on. No one was asking me for anything. There was no one to see or look at. It was quiet. It was empty. Then it hit me, I was dealing with something I had not heard since my psychology classes in high school and college, “empty nest.” The analogy does not get any simpler than that, baby birds hatch, grow, and then fly away from the nest, leaving it empty. While my “birds” were not flying away forever after each of the custody visits, the feeling was the same.

Yesterday’s emotions felt differently however. I know they did. Sure, my “baby birds” would return to the nest for other visits, but now, as they enter their sophomore and junior years of college, I can see things are different, much different. And I could not be happier for them, because this is the moment that I wanted for them, to take the things that they learned from me, and forge their own paths, create their own futures, make their own lives. With their early years of college life finished, they now have experienced the one of the final things they needed to do, feel their independence, learning to not only make their own decisions, but take into consideration the rewards and the consequences of those decisions. Both have taken major opportunities already, bold decisions that I never imagined so soon, proving to me and to those that know my daughters, that my daughters have bright futures ahead of them.

But knowing how strong and independent my daughters are, did not make my return back to the house, alone, any easier. It was quiet. Dark. No activity. The television was not on. No one was in the kitchen enjoying a snack. The laundry basket was not filled. Empty, the “nest” was empty. However now, it felt like the empty birds nest. My daughters schedules this year, and from here on out, are labor intensive, socially demanding, and then, still to be taken into consideration, time off to still be split between their mother and I. They will also want to spend time with their friends, and possibly, no, likely, significant others of their own.

I think what makes it especially harder for me now, and anyone who knows me knows this about me, my daughters are my world. As I faced that heart surgery back in 2008, the fear I might never see them again, combined with my complicated health as a long term cancer survivor, and a tense ten-year custody arrangement which is now ended, I find it anti-climactic that all the motivation and goals are behind me, leaving me to focus solely on the health issues that may lay ahead of me. I need to fight this feeling, because there is still so much that I want to experience with my daughters, their college graduations, weddings if they choose, and their children if they are so blessed.

(photo courtesy of Wild Things Food)

Living in Florida, I see nature and the circle of living every day. In the back yard, I have seen three baby deer over the last four years. I get to watch everyone grow, hanging around their parents, and then one day, they are on their own. And then the next generation begins. I guess that is where I am at right now. My daughters are into the next phase of their life, and will do great things, for which I am so happy and hopeful for. I do not know if the offspring of wildlife run into their parents anymore once they leave, but I know, as a human, I am definitely planning on it. Our visits will be shorter in duration, and who knows if the time will be enough to fit everything in. I do know, it will never be enough, ever again.

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