Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Running Out Of Summer Memories


I have a lot more Summers behind me, than I have ahead of me. Memories that I have of Summers in my youth are only slightly more than the photos I have as pictured above, not many of those either. I recall this little hard plastic shell pool, filled up with garden hose water. Once school age, I graduated to the town swimming pool, eventually learning to swim and jump off the high diving board (and learn the hard way what a “belly flop” was).

(picture from Google pics)

The other frequent activity during the Summer was the weekly trip to Shankweiler’s Drive-in to see a double-feature movie. Since it is likely that noone after Gen-X has any idea what this was like, allow me to describe it. You park your car in front of a giant movie screen. There were likely two movies being shown; a younger age-appropriate movie, then a movie for the older crowds, the first starting once it was dark enough. You hung a two pound speaker on your car window for everyone in the car to hear the sound, or as others did, simply set up lawn chairs or sat on the back of a pick-up or station wagon. In between the movies, there was a rush to the bathrooms, the refreshment stand, and to the playground directly below the screen. You were a real boss if you stayed awake for the entire second movie, and had enough mosquito bites to “connect the dots” with a Sharpie.

Toward the end of my youth, my Summers were spent working. One of the best seasonal jobs for teens was a local amusement park. I spent a lot of visits at Dorney Park as a child, and it was a totally different experience operating the games and rides. But still, I had so many memories. I just do not have a lot of photos.

There would be even less photos in my twenties, as my life was interrupted by a cancer diagnosis, Hodgkin’s Lympoma. There was no social media or internet at the time, so there was no desire or behavior to take pictures. There were two weddings over the next decade and a half, but as they both ended in divorce, those are pictures that won’t get posted. Besides, other than the weddings, my Summers were spent working, especially overtime, no need for pictures of that.

But with parenthood, came a new approach to Summers, and a lot more photos, much to my daughters chagrines. For the last twenty years, although I had worked many hours during the first ten years, my memories are as clear as the photos that I put together in photo album number one (500 photos).

We took trips to the beach, travelled to various places. I even pulled off the ultimate trip, to a “super Con”, where my daughters got to meet some of their favorite Manga characters. It should be noted, I also got to meet some celebrities in attendance as well, such as the original Karate Kid, Ralph Machio, pro Wrestler, Jerry Lawler, and the one and only Incredible Hulk, Lou Ferrigno.

But as much fun as I could pack into the two months of Summer break for my daughters, there was one thing I felt was important to be done, every Summer. It was not fun, well, not really, but necessary. In full transparency, I did not have a lot of support with school, just a reaction when I would flash my report card (again, for millenials and Gen-Z, these were paper copies of the grades that were sent home each marking period). I really had no role model for how to parent my children during the Summer breaks. But as my daughters were both good and hard working students, my fear would be during the Summer, if there were not some sort of learning exercises, even just fifteen minutes per day, that could lead to some habits making it hard to get back into the groove once the Fall rolled around.

Each year during the Summer, every day, usually during the time I would be getting ready for us to go out, I had my daughters complete a few worksheets of exercises from reading to math and other learning opportunities. It wasn’t tedious or boring. Most importantly, it kept them in the habit of “learning.”

Those workbooks stopped being a “thing” around the beginning of middle school. And as my daughters got older, while we enjoyed our Summers with each other, I felt it became more important for me to start sharing things that they would need to learn as they got older, to prepare them for adulthood. Again, not having the typical examples set for me to learn responsibility, I had in my head things that I felt were important for them to learn, such as learning to save money, budget, and prioritize needs and wants. I wanted to make sure that as they came of dating age, that they “took care of themselves” from a hygiene point of view and more importantly, what to expect of anyone interested in having a relationship with them. I wanted them to learn money management, responsibility, and decision making. I took opportunities to have them learn first aid, visit historical museums, and volunteer visiting animals in shelters.

There are no bigger opportunities for decision making than they have as adults now. With the custody order officially closed due to both aging out, they alone are now the ones who make the decisions to visit me here in Florida. They know they constant reference to “Cats In The Cradle” by Harry Chapin, and were are now at the point of their college tenure, balanced with working during breaks, and spending time with the tri-fecta package of mother/father/friends with any available time. I have made it clear, as I have warned them that their “free” time was going to be even less these days, and I know that time would have to be shared in many directions. I asked both only one thing, something that has really become a tradition, and emphasized to them even more important than spending holidays, if at all possible, all efforts made to spend Father’s Day with each other, as we have done every year (with the exception of two years that were beyond my control and will not be discussed in this post). It is just now, instead of spending most of the Summer following the weekend of Father’s Day with me, I have taken as much pressure off of them, and asked only a few days of that holiday weekend. Any other time of the year, we will make arrangements as we can, based on schedules, and likely even split between both my daughters as their schedules will not always align.

But there is one final thing that I did need to discuss with my “now adult” daughters, while I had them in front of me, not to be discussed over the phone or by text messaging. My daughters are aware of my health history, part of which they have read about in my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor” and my history with cancer, but it has been the second half of their life, that they have personally witnessed the many episodes of ill health I have faced due to the treatments from my cancer. For years, they have been told by many close to them, that I was “fine,” in clear contrast to what they were being told by me. In recent years, and even in spite of Covid19 policies, through Facetime, my daughters were able to be with me during my 3rd heart surgery, to replace my aortic valve. My daughters know my health is far from “fine,” and those who try to convince my daughters otherwise in an attempt to portray me to their advantage are only hurting their relationships with my daughters.

My daughters know I have legal documents in place as to my “living directives,” what will happen to me, should I be unable to decide my medical care for myself, but my wishes stated in writing and certified. But there was one thing I needed to discuss with them. A recent visit and CT scan, has led to a new level of an old concern that I have been aware of for sixteen years. There is a new term being used in the results of that scan, besides the characteristics continuing to have changed, “adenocarcinoma” (cancer) is now being mentioned in my report on my one lung. Though the circumstances behind their grandfather dying from lung cancer (a smoker), and a nodule on my lung (likely from radiation treatments 35 years ago), I wanted to have the discussion with them in person so that they could see, that currently, adenocarcinoma is just a word being used, and the type, unlike my father’s cancer, is a slow enough developing cancer, that it is quite possible nothing may be done with it, that my mortality would have an end due to a different issue before this cancer would have any impact. But my daughters would hear everything from me, not what “others” wanted to tell them.

Sure, hearing the word “cancer” is scary whether you are the patient, family, or friend. I knew of this news for a couple of months, trying to figure how I would discuss this with my daughters, knowing that hearing “lung cancer” would detour their thoughts to their grandfather. My situation is completely different, and right now, manageable.

No, not the way I had planned our last Summer together of the final phase of their childhoods, but I definitely feel a lot better knowing the heads that they have on their shoulders are more thoughtful, empathetic, and definitely have learned that the things they are doing today, are going to lead to opportunities tomorrow.

All too often, non-custodial parents, usually fathers, are referred to as “Disney Dads,” a really bad stereotype, implying that since the parent is allowed only minimal time with their child, it is always spent doing “fun” things like going to amusement parks, or the beach, not doing any of the hard stuff. Not only did I find this term offensive when I first heard it, I fought any attempt and opportunity to level that claim at me. The truth is, to this day, regardless of how much time I get to spend with my daughters, and in the future with my daughters, I have not changed. I am still about memories and lessons as I know they are not far away from the next phases of their lives, serious relationships and personal responisibilities. They will hit the ground running once they graduate college and hopefully secure good jobs, remember the things that I taught them, and then live their own “cats in the cradle” lives. My second photo album of 500 photos has already begun being filled, and will hopefully include more faces in the future.

To Know You Are Not Alone


A little over two weeks ago, I got to attend an event that as a long term cancer survivor and patient/survivor advocate, only comes around every so often. By far, this was the largest endeavor for those especially with health issues similar to mine, caused by circumstances similar to mine – a diagnosis of Hodgkin’s Lymphoma and late developing side effects from the various and extreme treatments used to save our lives. One of my friends, also a fellow long term survivor whom I met many years ago previously, during the height of one medical emergency after another recently, described himself as a “unicorn,” because doctors soon learned that treating Danny, with the health crisis he was in, was like seeing a unicorn, a rare if not impossibility. Health issues like Danny has, also myself, and many in attendance at this gathering experience, literally filled the room with “unicorns.” But unlike his doctors, there were many advocates and doctors and nurses in attendance who “got it” when it came to the care of long term survivors. To them, we were not “unicorns,” but people who need help, care, and support.

I will say, that since the pandemic, except for a few rare occasions, I have avoided large indoor crowds, and when I have been inside, it was for a cause I felt worth the risks I was exposing myself to with my extra vulnerability to Covid19, such as my daughters graduations. I have functioned quite well over the last four years, continuing the precautions that have kept me from being infected, grocery shopping, picking up take-out food, going into offices, even going to see an occasional movie. But attending this event admittedly had caused me the greatest anxiety because I worried how strong I would be, to not let my guard down, and be exposed to someone unknowingly infected. This post is not about Covid19, but as soon as I felt comfortable enough, not only did the mask come off, but I did something I have not done in over four years, and that was only because the emotions of the moment were stronger than I could resist. I have been waiting to see so many of these other survivors for years, and to be reunited with others I have not seen even longer. Hugs were bound to happen, and did so in great abundance.

I think everyone would agree the weekend was too short, and not enough time to get everything done in between getting to meet everyone that up until that point, knew only through the digital world. Some arrived early, some stayed an extra day. But the main day was about the advocates who came to speak to all of us. There were personal survivor stories, lots of statistics, and doctors explaining a lot about the “why’s” that many of us long term survivors have the health issues that we do. I had a personal connection to two of the speakers, both doctors. For the first time, I got to hear how my one doctor found himself studying Hodgkin’s Lymphoma and survivorship.

I was also honored and humbled to join one of the two “survivorship” panels to answer questions alongside of my two medical heroes. I was asked to speak on advances in advocacy over the years. Many of my fellow survivors can relate to a time when we were on our own. So once the world wide web came long, and gave access to support via email, and then eventually social media among other resources, to end up in this ballroom gathered together at one great event, supporting each other, this is what advocates do, I would say the advances in advocacy have been as huge as advances in diagnostic methods and treatments for Hodgkin’s.

But I came to realize something. There is a difference between advocating on the smaller level, such as peer to peer, and the much greater scale such as the organizations that were represented and also spoke. They are the ones doing the research on our needs and speaking to our legislative branch of government for assistance financially and for other resources. And they are doing great things for us, though in the future. In the present, many need help now, and joining together with others in this hall, gave everyone a chance to share ideas, suggestions, and support. Most importantly, it is one thing to have a conversation online. It is another thing, to experience in person, that we are not alone after all.

There was a reality though, there were many who were not able to attend, some who had originally planned to attend. Long term survivorship is very uncertain. The room was filled with many of us, 30, 40, 50 years of having beaten a deadly disease, now living with the late side effects from the treatments that gave us those years. We do what we can to maintain good health, fix what can be fixed, but everyone expecting to see “tomorrow.” And unfortunately, there were so many, even recently, whose bodies could no longer handle any more trauma. This event gave many of us an opportunity to grieve with each other over the many other survivors passed over the years.

It really was a whirlwind weekend full of memories and information. Those who took part in planning and organizing it should feel proud of what they accomplished, and see the difference that it has made to those who atteneded, and the disire of those hoping for another opportunity in the future.

Jennifer – The Strength Of A Survivor


Over my 34 years of cancer survivorship, I have come across hundreds of fellow cancer survivors, especially those who battled Hodgkin’s Lymphoma, just as I did. I have gotten to meet them over social media or has often been the case, in person. And just like snow, and no snowflake being identical to another, the same can be said for us Hodgkin’s survivors. And just like a snowstorm, survivors interacting with other survivors, just like snowflakes combining to make something wonderful to experience (usually anyway), each of our differences make our interactions with each other, often a wonderful and at times, a life-changing experience.

This was Jennifer and her picture has been shared by so many who knew her. Because those who were able to know her, found this photo the best way to describe Jennifer without any words necessary.

Like many of the other survivors I connect with, Jennifer and I shared a lot of similarities from the close proximity of our ages at diagnosis (I was actually two years older than she was) with her being diagnosed two years before me. However, similarities between us would end, as she would have to battle Hodgkin’s multiple times, end up battling another cancer just a few years ago. And then of course, she had to deal with multiple late side effects from her treatments, similar to those that you have read me describe in other posts. In fact, just one other connection, she had her first heart surgery five years ago, on my birthday I just discovered.

Through all of her medical struggles, and this is what everyone who knew Jennifer will say about her, she was one of the most selfless people you could ever know. During any one of her health crises, Jennifer was always looking out for other fellow survivors in need of support, encouragement, or even just a “check-in” to see how someone was doing, all the while managing her own needs. And I mean, she did this all of the time. That is, until recently.

Jennifer had faced some additional health issues that finally left her unable to reach out, to offer solace and encouragement. For the first time in her life, all of her energy needed to be focused on herself and it was our turn, to throw all the support and encouragement we could in her direction.

Those of us who were treated for Hodgkin’s decades ago were treated with such harsh and toxic treatments, while no longer used today, left us dealing with devastating side effects for our bodies to deal with. And as is often the case, the body can only take so much trauma. But honestly, in spite of what Jennifer had gone through, unless she knew differently, there was never any indication that her mortality was near. She had so much fight in her. And though any further communication between us, basically involved me just writing to her, knowing that she would be too tired or perhaps for other reasons, unable to write back. But she would at least see the support I was offering her.

In fact, just around the end of March, we actually exchanged text messages about her latest health challenges, which mirrored one of my health issues, dealing with sepsis. It seemed like she was finally turning a corner on her way to finally overcoming such a challenging period with her health. But more communications would come through one of our other survivors (one of us often acts as a liaison so as not to bog down family members) that Jennifer would have more challenges, I don’t think any one of us would have ever thought this would happen to Jennifer, of all survivors.

And it is so clear the impact that Jennifer had on so many of us. Her picture, the same one as this post, placed on their pages with their tributes to Jennifer, everyone sharing what Jennifer meant to each and every one of us. It is easy to get lost with all the words from us survivors, that Jennifer was much much more than just a cancer survivor. She was a loving wife, mother, grandmother, and loved her animals. It was only form her obituary, I learned of her work in law firms and as a teacher’s assistant.

As for her advocacy for herself and for her fellow survivors, her efforts, in parallel while she battled her own health emergencies, often made every effort possible, to teach anyone who was charged with her care, the extra attention necessary for Hodgkin’s survivors with our late side effects.

For all the good that Jennifer did, and for her never ending smiles, it is not lost, that in spite of her decades of survival, she would pass away at the age of 56, her body simply unable to take any more trauma. And speaking only for me, though I am sure others feel similar, Jennifer, like most of my fellow survivors who have passed, was younger than me. And as it often happens, in spite of all the surveillance I undergo for my late side effects, it cannot be helped to wonder how much more my body will take, and what if anything would be the catalyst.

Again, like many of my fellow survivors, we were all set and excited to get a chance to meet Jennifer in person in just a couple of weeks, hoping that her health had turned for the better. Sadly, it had not.

For me personally, I will miss Jennifer’s never ending support and encouragement that she offered me over the years with my health and the wonderful support she gave to me as a father for my daughters. And her smile, just like her picture, it just never ended. Even now, all who knew Jennifer, will always remember that smile, and her spirit will still be there for each of us.

On a final note, there are many “younger” or “newer” survivors who may see this tribute and all of a sudden develop an anxiety of futility, as in “does this mean my cancer is only the beginning?” No. As I mentioned, and Jennifer would be the first to agree, the treatments used today, while still difficult and toxic, are not as harsh as they were decades ago, and surveillance is better following the treatments. But it is the follow up care that survivors like Jennifer, myself and so many others have tried to bring awareness to, the body has gone through so much, and even if just through a primary care doctor, survivors need to be watched just in case, and it is not definite that any will, but just in case an issue should develop, it is better to be on top of it, discovered early, before it gets too bad to do anything about. Again, it does not mean that anything will develop, you just want to be ahead of it.

I am certain Jennifer would agree with me on that.

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