Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

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.

An Age Appropriate Situation


(picture courtesy of Google pics)

One of the most difficult topics that comes up amongst my fellow cancer survivors and patients is “what do I say to my kids?” Almost cliche, my response, a common one, is usually “keep it age appropriate.” But what exactly does that mean… age appropriate? A 3 year-old will not understand someone is dead? Should we over load a teenager with the facts behind the passing, just because we think they can handle it (fact – a teenager’s brain is still forming into their late teens, so, no, they may not be able to handle or process someone dying on the level needed).

As an adult, no, even since I was a child, I have experienced death in various situations. I had been the child watching grown-ups around me, bawling their eyes out at a funeral service without knowng why, even not knowing the person, having just been dragged there so as not to leave me alone in the house. As a young teenager, one year in particular, I experienced the loss of several relatives. Upon high school graduation, I had already buried two classmates, and it seemed all too often, after graduation, another classmate would die, year after year.

Then, in the working world, I would experience loss, sometimes even more difficult than the death of a family member, a co-worker or friend, someone I would actually spend more time with as an adult than my own family. I understood where the joke came from, a housewife asking her husband why he was reading the obituary, his response, “to see if I have to go into work today,” referencing his own mortality, just the happen stance of being an adult.

And of course, being a cancer advocate and friend to many survivors and patients, I have experienced death more often than I ever thought I would. As it turns out, I experienced something new a couple of days ago, watching my daughter deal with someone passing, a funeral.

My daughter works a Summer seasonal job when she comes to visit me. This year marks her fourth season. And she has worked each season with several of the same co-workers. But it was one co-worker, last year, had been battling cancer. Again, the word “cancer” not something unknown to my daughter, my daughter had a high level of empathy for her co-worker and the precautions around her co-worker, to not put her at any kind of risk that would jeopardize her health any further. After all, we were and still are, dealing with Covid which has been responsible for delaying cancer treatments for so many. So my daughter, was one of the few who voluntarily wore a mask around her co-worker. My daughter was not sick, but her wearing a mask gave her co-worker peace of mind that my daughter was going to do her part to protect her.

Well, this year, as arrangments were being made for my daughter to begin her season’s work, her boss informed me, that her co-worker had recently passed. The news had been hard on all of them, and she asked if I would tell my daughter before she began work. Of course I said I would. My daughter has been aware of others who have passed, family members, but had been too young to really remember; her uncle, her grandfather, and a great grandmother. This was someone however, that she had a relationship with, year after year when she came to visit me. And like me, her co-worker shared a common bond, cancer. My daughter, knowing my example of cancer, only knows of people surviving cancer, or at least remembering (she was eight when her grandfather died of lung cancer). Now she was going to find out, not everyone does.

I actually think it was harder on me to tell my daughter, because this news was going to cause pain for her, and no parent wants their child to experience pain. Having never met the woman, my eyes began to well up as I startedt to tell my daughter. Yes, I am impacted by news of someone dying from cancer even if I never knew them. Her boss had asked me if she would want to attend the memorial service, and other than being dragged to services as a younger child, she had no experience with this, so I needed to ask her if she wanted to attend. And she expressed that she wanted to attend.

I attended the service with my daughter (she does not drive) and while funerals are generally a sad time, as my daughter listened to the eulogy, she found it difficult to be sad, with all of the wonderful things being said about her former co-worker and the way she lived her life, and the impact she made. Of course, my daughter knew many of these things about her co-worker, as she spent the last three years working with her. I told my daughter, “she really meant a lot to so many, and did so many good things. I hope people let her hear the words we heard, while she was still alive.” My daughter agreed, and said, “that is exactly who she was.”

I remember as a child being dragged to funerals and the horrors that filled my head. I was forced to “touch the hand” of the deceased by my elders, “important” to feel death and to see what we are like without “life.” Another horrible thing I was told as a child, the deceased was “sleeping.” I can remember being petrified of never waking up again. But for my daughter, something neither of us planned to experience with each other, as it was stated by the priest, my daughter was able to “celebrate” the life of her former co-worker, clearly a life to have been happy for.

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.

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