Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

26 Mar 2024

The Mind Of A Cancer Survivor


This post has been sitting in my head for quite some time now. It became impossible to sit on any longer, though I needed to hold out one more day. Yesterday was my oldest daughter’s 21st birthday, and I wanted yesterday to be her day. Because yesterday was all about her milestone, not mine.

Yes, with my oldest daughter turning twenty-one years old, that is another milestone of mine, as a cancer survivor, that I have reached, that I really never thought I would see the day. But as happy as I was for my daughter, there have been so many thoughts running through my head, that I cannot control, just how lucky I truly am, to have reached another milestone, of many already reached.

The meme pictured above came across my feed today, and the timing and the wording could not be more perfectly said. Over the years, I have made reference to “survivor guilt,” which many mistake me for feeling guilty that I survived cancer, Hodgkin’s Lymphoma. Nothing could be further from the truth. It is the guilt of why others have not been as fortunate as me. Please understand, and I am going to shout it, “I AM SO GRATEFUL THAT I AM STILL HERE AND THERE IS SO MUCH MORE THAT I WANT TO DO AND EXPERIENCE!” But my guilt and sorrow is for those who never got out of remission, developed other complications or other cancers and passed away, and other survivors whose bodies simply could take no more.

As the second part of the meme states, “Holy Shit!” every day is a reminder what could be gone tomorrow. And as my daughter celebrated her 21st birthday, actually her second birthday outside of the US, she was celebrating with friends and I could not be more happy for her. I celebrated her birthday going through old photos of her, her younger sister, and myself.

You see, neither of my daughters were around when I battled my Hodgkin’s Lymphoma. It would be more than a decade before I would even get my chance at parenthood. But being in long term remission, I really did not consider parenthood a milestone. I was done with cancer. I was “over it” as many people wanted me to move on with my life after cancer.

But four years after my oldest daughter was adopted, and two years after my younger daughter was adopted, my world of cancer survivorship, eighteen years after that I thought I was done with cancer because the doctors even told me so, my cancer past came crashing to the present. I was dying. I was not aware of that, but following the emergency double bypass I had to have for “widow maker” damage to my heart, with a blockage of 90% of the LAD (left anterior descending artery), my cardiologist put it bluntly after the surgery, “it was not a question if, but when” I was going to die.

There it was, the first event that nearly took my life from my daughters. I will recognize that day next month, sixteen years ago. So my heart got fixed, that should be the end of the story, right? Unfortunately not. You see, what my oncologist (cancer doctor) was unaware of back in 1995 (my five year milestone Hodgkin’s-free), that the radiation therapy and chemotherapies that I underwent, had the potential to cause progressive and lethal situations. It turns out the scientists knew about it. They just never passed it on to the doctors.

But nearly four years later, I was carried out of my house on an ambulance stretcher at 3am, again, dying. I had developed sepsis, a fatal infection. I was unaware of what was happening, felt fine even as I went to bed that night. I had developed something called “aspiration pneumonia”, which without getting too technical, was caused by me unknowingly inhaling gastrointestinal “stuff” into my lungs while I was asleep (another complication due to radiation). Sepsis had developed, and without the correct and fast treatment, I would have died. Again, this is where the story should have ended, but it did not.

I had another round of aspiration pneumonia nine months later. All the while, remember me mentioning about the “progressive” side effects from my treatments? They were still doing their things. But here is the kicker. Because of the risks of doing anything to correct any other issue being more risky than doing nothing, the situations needed to be as dire as the other events I had gone through. I had to hear the words “severe” for any issue to get corrected. I often refer to my body as a human ticking time bomb. The good thing is, I have been watched by many doctors, participating in a “survivorship clinic” setting. This is where doctors exist that “get it” when it comes to following up the needs of cancer survivors that too many other doctors still do not get. So all these different doctors that “watch” me decide when it is time to do something, in other words, yep, death or some other serious issue is impending.

Case in point, 2019, I needed to have the RCA (right coronary artery) stented, because back when my bypass was done, that cardiologist felt the RCA would get better on its own. It did not. Then in 2020, my left carotid artery had finally reached “severe” status, scorched by radiation damage as well, and the risk of a stroke was now a reality if not corrected. Next, in 2021, my aortic valve had reached a “severe” status from the calcifications from radiation damage needing to be replaced.

Is there more? You betcha! But you get the idea now how the second part of that meme plays out. And the truth of the matter is, any of the events that I mentioned, or any of the many that I did not mention, any of those could have led to me missing what I consider some of the most important milestones of my life, in my daughters lives. And for sixteen years, that is what both of my daughters have known. It has become a “given” by my daughters, that any health challenge I face, I will get through it, because that is all that they know.

But I know something that they do not. Time is not my friend. You see, all of the things that I have had corrected, because the progressive issues from my treatments are still at work, will need to be redone again some day, and possibly some other new issues develop, because they have had time to do so. The question is, will my body handle second attempts or the new things that develop. For some of my survivors who faced similar situations, their bodies could take no more. And for some, they were not even aware of anything when their survivorship came to an end. With my daughters still so young, they have not been introduced to that stage of my survivorship yet. But that time is soon coming.

Look, I know this post is probably one of the heaviest posts anyone has read from me in a long time. As my daughter was celebrating twenty-one years, I could not help but, because my brain betrayed me that way, reflect on the many things that almost kept me from seeing their school graduations, birthday milestones, and so much more.

I will leave you with this. I really am a positive minded person. It is a disservice to me as a friend to tell me to “just get over it,” or “just be positive” because my body and my cancer survivorship dictates otherwise. But I do go to bed each night, expecting to wake up the next morning, and do the things I have planned tomorrow. And there are many more tomorrows that I want, college graduations, weddings, grandchildren, so that means I will continue to let the doctors do what they need to help me reach those further milestones. But ultimately, I have no say in tomorrows. I have learned that from other fallen survivors.

Yes, I am grateful for surviving Hodgkin’s Lymphoma thirty-five years. I am grateful having survived all of the medical side effects that I have faced. But I also realize, that at any moment, as I am constantly reminded, I could also miss the next milestone. This is what cancer survivorship is to me. I am making the most of my years as I can.

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

Is It Lack Of Value, Or Lack Of Priorities?


There is a comment that I have come to learn to despise in recent years, especially during the pandemic. “At least they died doing what they enjoyed. They didn’t live in fear.”

(photo courtesy of Katelyn Mathe and North Penn Now news service)

An article came across my news feed a week ago. Two nineteen year-olds were charged with homicide by vehicle among other charges, stemming from the two racing and killing a 62 year-old woman. These are the photos of the killers.

(photos of these two courtesy of Montgomery County District Attorney’s Office and North Penn Now news service)

These two punks, now killers, were racing their cars on a main highway. I am from the area, so I know where the accident occurred. Which makes the next factor for me to have read, seem impossible. The car that impacted the innocent victim, had been travelling 110 miles per hour, twice the speed limit, and like I said, impossible for me to imagine anyone travelling that fast on that road. This was confirmed by an airbag module in the killer’s car. The other punk, was recorded at 95 miles per hour.

They were doing what they enjoyed, even though it was illegal, besides unsafe, and an innocent 62 year-old woman is dead. Pretty sure she did not enjoy her ride, wherever she was headed.

This is not the first story to grab me like this, and piss me off. We had an accident locally in the last couple of years (actually violent accidents happen a lot here, but that is another story). The was a one car accident that killed a teenage driver. It turns out, he too was racing his car, of course illegal, travelling a high rate of speed, crashing into a tree when he lost control. His one parent reported, “he really loved racing his car.”

And of course, during the Covid pandemic. We had a new virus, no vaccine, no treatment, and contagious as hell, and lethal. But many took the recommendations and eventual required precautions as an afront to their rights and liberties to enjoy their lives, that it should be up to them, to be able to go about their business, risk their health, whatever happens happens. And if Covid got them, at least they were doing what they enjoyed. One local business flat out defied government orders to prevent mass infections, remaining open for all to gather and party as if nothing was happening. I knew of at least two patrons who went there, and died suddenly and mysteriously soon after that. Given that they were only in their forties, and where they were previously, it was likely Covid.

Then you take someone like me, in fact thousands of others like me, dealing with late side effects from our cancer treatments decades ago. There are a lot of things we would like to do, and speaking only for myself, it is not about what I enjoy, but rather what I still want to experience.

During the sixth month of my chemotherapy, during the Winter, I asked my oncologist if I could go skiing, concerned if my body could handle the physicalness of the activity. He said that I could, but cautioned me, that because of how warm I would dress, being Winter, I would likely sweat a lot, and this of course could result in me getting sick. And if I got sick, that would have the potential to delay my next treatment. Which that is the last thing any cancer patient wants to happen. So contrary to how some people react, I was just “living in fear,” no, I wanted my treatments to end when they were supposed to. I could skip skiing one year. It was worth it to me.

That was not the only time I have been in that position. Of course, I have documented my issues with my heart, courtesy of my treatments, which of course has kept me from doing things that I enjoy, such as amusement rides and various other recreational activities. Again, the chants of “living in fear” attack, but given that I am still young, yes at 58 years old, I should still have a lot of years left, I have so much more that I want to experience, that are more important than any kind of recreational activity I wish I could do. But the risk of a fatal cardiac event taking away what I want to experience in my life, is not living in fear at all, it is about what is important.

Somehow, I have cheated death through my survivorship more times than I want to count, and I am still here. I have two wonderful daughters that I have been able to see grow to adulthood from infancy, during some of the most serious of my health issues. They are now in the next stage of their lives and it is amazing to watch. And some day, if they choose to get married and have children, I want to be around for that.

So if that means that I need to avoid certain risks, regardless if they are something that I enjoy, I am not doing it out of fear, I do it for the love of my daughters, so that they do not have to deal with grieving the loss of a father well before it should be time. Yes, I still practice the Covid precautions because they matter to me. I miss certain social activities for sure, but my long term goals with my daughters far outweigh any temporary satisfaction I would get from karaoke or going to see a rock concert.

I guess that is a clear difference between the thought process of a 58 year-old man and two teenage punks, whose lives are now officially over. They loved to race their cars. They killed an innocent woman. They did what they enjoyed. Hope it was worth it to them. I am sure they could have had much different lives had they thought about their futures and how much more valuable that would have been to them.

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

20 Years In The Making


I have achieved many things in my life. I have survived many dire circumstances with my health. But there is one aspect of my life, that tops everything combined, being a Dad. And though March 14th is not a birth date, it became the date that would change who I was/am forever, the day I became a father.

Left unable to have biological children from side effects of my chemotherapy for Hodgkin’s Lymphoma back in 1988 (my radiation therapy gets a pass for this issue), and multiple failed attempts through fertility specialists, a decision had been made that if I were to ever become a father, it would be through adoption. While attending an information meeting on adoption, the influence from a newly adopted toddler named “Lily,” the decision was clear, adoption would by my only opportunity to become a dad. And “Lily” showed me it was meant to happen.

Adoption is a very difficult and serious decision to make, because in most cases, the adopting parents, and in some cases, a mother making a heartbreaking choice to place her child for adoption, are making a choice for someone who has no say in the matter. A child is born unto one parent, and then one day, is in the arms of another, likely never to see their birth parent(s) ever again.

There are two types of adoption, domestic and international. Though laws are fairly strict in the United States as far as adoption are concerned, there are chances that a birth mother could change her mind about the adoption, perhaps even years later. For this reason, and this reason alone, I did not want the heartache of having my child taken away from me, even if it was to return to the birth mother.

With “Lily”, I was introduced to the country of China, the last time I had heard about that country was as a senior in high school, so, a long time ago. My memory of what I learned back then came to the forefront, as China’s “one child” policy had resulted in the need to place many children into other families. And there were many families around the world, not just the United States who were more than happy to build their families partnering with China.

I was originally told to expect to travel March 17th, travel plans had been made. Then two weeks before travel, our date was moved up to March 13th. The adoption process had been halted for a number of months due to the SARS outbreak of 2004, and when international travel had opened again, news could not come soon enough that we would be travelling. Moving up the date made it even sooner.

This is an actual picture from the window of the flight that was taking me to my daughter. Upon landing in Hong Kong, all of us traveling were given even greater news.

Thinking there would be a couple of days before we would all get to meet our children, we were informed to get a good night’s sleep, as we begin the adoption process the next morning, meeting our children, and returning to our hotel with our new family members.

The date was March 14th, 2004. There are many things in Chinese culture that are considered lucky or fortuitous, the color red, lady bugs, and something called “the red thread.” This “thread” is actually imaginary but carries one of the most meaningful connections between those who “hold” that “thread”. And though that “thread” will grow and stretch, it will never break. March 14th already was special to me, my late grandfather’s birthday.

From that morning on, my life changed, taking on a whole new meaning, a whole new purpose. Every decision that I would make was now because someone else was counting on me. To refer to parenting as an “experiment,” is an understatement as I grew up without the typical “nuclear” family, the only thing I knew about fatherhood, was what I would have liked to have and did not, as my parents divorced when I was three years old. My only examples of parenthood came from school friends when I would visit their homes.

But when my oldest daughter was placed in my arms, I never gave another thought to what I missed out on, nor what I saw my friends have. The bond between father and child began at that moment for me, instantaneously. While there is a clear difference between giving birth to become a parent, and through adoption, the emotions of that moment where it begins are the same. It took no time at all for me to want to bring a sister into my daughter’s life.

And that moment came almost two years later. With two daughters, I officially became a “girl dad.” And I was the happiest man on the planet. I felt a purpose, a responsibility, every decision that I made in my life, would have either rewards or consequences that would impact my daughters. There was pressure to make sure as they grew up, that they would learn everything they needed to be a responsible and respectable adult. Priorities were morals and manners, of course schooling, responsibilities and decision making, all the while, being a kid. It is said that 90% of our time together, will be before our children turn 18 years old. And boy did I want to make that time count.

Unfortunately, divorce changed the track a bit, but I did everything I could to stick to the original plan. And unlike my childhood where I barely saw my father, technology made it possible for me to stay in contact with them as much as I was able to do so.

And now, here we are, 20 years later. Both of my daughters are in college, independent of their parents, making their own decisions, with so many more to come. But instead of being in the guidance position, I am now in the advisor role. My daughters face decisions and come to me for assistance as needed, things that I may see that they do not.

My health issues have been well documented on this blog, and during their childhoods, my daughters have been through all of them. They are just now learning about my cancer past which gives them understanding why I have the health maladies that I do. But for me, these 20 years have given me meaning, purpose, drive. With the things that I deal with, these years are not guaranteed by any means. However, I want more, many more years, many more experiences. And my daughters are the reason I will continue to fight for those years and my health. I could not imagine where I would be today without them.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment

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