Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “July, 2024”

20 Jul 2024

Another Sword


(picture by radiopaedia)

Over the years, I have made the comparison of my health history as a long term cancer survivor to that of the legend of “the Sword Of Damocles.” In ancient Roman lore, Damocles flattered his King, Dionysius about how great it must be to be king, to have all the power and wealth. Dionysius offered to let Damocles sit on the throne, to experience what it was like to be the king, but directly suspended over the throne, and Damocles, was a sword held by just one strand of a horse’s tail, able to drop at any moment the tail hair would finally give and break. Damocles, having the sword hanging over his head of course produced an anxiety and fear, never knowing if or when it would drop, teaching him that all the power and wealth of being a king could all end suddenly.

When I was diagnosed and treated for Hodgkin’s Lymphoma back in 1988, while the prognosis for survival was very good, 85% at least five years, nothing to very little was known about what could happen after those five years. The truth is, once a cancer patient reaches that five year mark, they are often treated as if they are officially cancer free, very little concern for the cancer to come back. But in 2008, I was discovered to have developed not just one issue, but several, late side effects from the treatments, chemotherapy and radiation therapy, that were used to “cure” me. Once discovered, it then had to be determined which was a priority for corrective action, and what could be “watched” for progress if intervention was needed. Though I had several issues, the prominent one that got the rapid and urgent attention, was a major heart blockage, often referred to as a “widow maker” (it does not take a rocket scientist to figure why they call it that), that had me on an operating table within 36 hours to save my life via emergency bypass surgery. Obviously that surgery was successful as I am typing this post.

But during the mad scramble to prepare me for the surgery, other tests had been performed. Soon after the bypass had been complete, more tests had been ordered as it was soon discovered a common cause behind all of the issues discovered, my treatments for cancer. With the “widow maker” dealt with, all of the other issues would be put into a “watch and wait” status, until the next issue would develop to a serious enough level to require intervention… my “Swords of Damocles.” I have many “swords,” thirteen in fact that are being “watched”, and once in a while, a completely different sword pops up out of nowhere, without warning.

(photo courtesy of Final Fantasy Wiki)

But in my last post, I made mention of a health issue, that several readers picked up on. I honestly had just been talking about it “matter of fact” in relation to conversations that I was having with my “now adult” daughters about my health history, something that they are old enough to know and be aware of. If there was an order of how all of my “swords” have been discovered, the issue in my last post, would have been number four, unidentified spots on my lungs. At the time of discovery back in 2008, they were just small enough to be noticed. Given my health history and exposure to the toxicity of chemo and radiation, it was determined necessary to watch and study these spots for development, how fast, and any other changes. Ironically, this would mean more exposure to radiation via chest CT scans and Xrays, but then hey, if the extra radiation could help discover something potentially cancerous before turning too bad, it was a worthwhile risk.

And so I would have a CT scan every year. By the third year, more of these spots would appear, but one spot in particular was getting attention. It was now measured at two millimeters, but it was unidentified and uncharacteristic. My doctor determined that it was still best to watch its progress as opposed to doing anything invasive such as a biopsy. The CT scans would continue annually, and over the next many years, that spot continued to grow, ever so slowly, and soon a second spot became measureable. But still, unidentifiable, my doctor felt it was safe to still “watch and wait.”

A couple of years ago however, fourteen years after it had been discovered, that spot soon had a couple of extra words attached to the description, as well as the size now more than 400% larger compared to 2008, “possible adenocarcinoma,” lung cancer. Over the years of my survivorship, I have learned not to put the carriage before the horse, or let my anxiety get the best of me, until I get the full explanations or decisions to be made from my doctor. And yet, my doctor felt, and I agreed, still no reason to do any biopsy, and decided to continue to watch this nodule. Yes, in the meantime, that smaller one has also grown, but not as rapidly, and a couple more are now measurable.

I had been under the care of a pulmonologist (lung doctor) once before, back in the beginning of all this mess. This year, I made the decision to hire another pulmonologist. I had an appointment already scheduled with him, as well my annual CT scan. But thanks to the way medical records are now kept electronically, I was able to see my results of the scan prior to my appointment. The nodule had grown three millimeters since my last scan, and now the phrase “suggestive for indolent lung adenocarcinoma,” lung cancer. Fuck!

Another cancer had always been a possibility due to the increased risks from my treatments. I had a skin cancer scare back in the early 2010’s on the back of my skull at my hairline (clearly from the radiation therapy). I have frequent polyp histories in both my esophagus and colon requiring removal of the polyps before turning cancerous, as well as a condition called Barrett’s Esophagus, a pre-cancerous condition for esophageal cancer. And of course, I had always had lung cancer on my bingo card of health.

But lung cancer had a different meaning for me. My father died from lung cancer, or rather complications of lung cancer. He had the diagnosis, surgery to remove the tumor, which the doctors had declared at stage one, the best case scenario. But following “preventative” chemotherapy and radiation therapies, something happened, horribly. My father would end up terminal and pass away in less than a year.

Now I have a reputation for being a difficult patient with some doctors, and yet a helpful patient with others. You see, I demand that I am included in every decision being made, and that means I need to know everything that I am dealing with. So when I meet a new doctor, I give that doctor a chance to talk to me, explain his thoughts, and then it is my turn to talk, especially to ask questions. If my questions are met with annoyance or any other kind of pushback, I am out the door. If the doctor is receptive to my “involvement,” we move forward.

So I went to the appointment with my new pulmonologist and he did not waste time with idle get-to-know-you chit chat. Immediately he began talking about action with this nodule on my lung. With no official confirmation, though the characteristics all but definied the nodule as cancer, he talked about two options. The first option, a needle biopsy which came with a risk of a collapsed lung, oddly enough one thing I have not experienced with all of my health issues, and the second option would be to remove the lung in a procedure called a “wedge”, meaning they would take a hunk of lung with it to make sure that they got any peripheral cancer cells if any nearby.

To be clear, there is a huge difference between my Father’s lung cancer situation (smoking for six decades) and my situation (exposed to an unGodly amount of radiation to my chest area for treatment of cancer). However, my concern would follow my Father’s path from what I witnessed, and with major factor supporting my concern. My Father’s lung cancer was stage one, limited to just the tumor. They gave him chemotherapy anyway for four cycles as preventative, still no evidence of cancer. But then the decision was made to have him undergo preventative radiation therapy. Soon after that, he was declared terminal and he passed away a few months later.

So here I am, with a suspected lung cancer nodule, not confirmed. I am not willing to undergo the needle biopsy risking a lung collapse. Risks and being a long term cancer survivor do not go well together. But if I were to agree to this “wedge” being done, admittedly as some of my other fellow long term survivors have had to face, and it was determined to have been cancerous, I have two concerns. The first would be complications from that surgery, a real risk. The second, what would be pursued following the surgery and confirmation and cancer? Preventative chemo? Preventative radiation? Do you see where I am going with this?

I make all of my decisions based on facts, medical opinions, experiences of my fellow survivors, and just as important as all of them, my hunch or gut feeling. According to the National Institute of Health (the NIH), an “indolent lung carcinoma” is a slow-growing cancer, so simply that it is possible thought cancerous, not likely to be cause of death in one’s lifetime. And given my health, and likely shortened mortality due to my issues, a factor that definitely plays in my favor.

So if I were to allow the doctor to do the wedge, and it were confirmed as cancerous, what would be next and then would I potentially follow the same path as my father with complications?

I spoke with other doctors on my “team,” and we are all in agreement that I am okay with my decisions to take the position I have, to leave well enough alone, and just continue to watch it. Another CT scan has already been ordered, and a PET scan is being pushed as well since I am not agreeing to any kind of surgical diagnostics currently. And I am good with my decision. Which is what contributed to the end of my last post, and having the discussion with my daughters. Being adult age now, they need to understand what I have gone through, and what I deal with. And they needed to be assured, that even with this news, even if slightly comparable to their Grandfather’s lung cancer, my situation is different, and so is my decision.

I am not sure how much more luck I have having gone through everything I have, but my daughters have only known me to get through all that I have. And they expect this to be no different.

We shall see in the Fall.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
18 Jul 2024

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.

Posted in Adoption, Animals, Cancer, Education, Family and Friends, Food, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
16 Jul 2024

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.

Posted in Cancer, Education, Family and Friends, Inspired By... | Leave a comment

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