Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

The Day I Became A Dad (For The First Time)


Next to losing hair, the most upsetting thing about going through cancer treatments for many patients, is the ability to have children. Being able to have biological children going through the cancer experience can be affected in multiple ways. Stress alone has the potential to drive down the body’s ability to produce what it needs for its part in the procreation process. And of course, there is the toxicity of the treatments, chemotherapy or radiation, that can play the ultimate role in whether or not, biological child rearing is possible.

A separate issue of course, is when someone is already pregnant, and the decisions that need to be made as far as continuing treatments, beginning treatments, stopping treatments, or if necessary, aborting the pregnancy.

For the purposes of this post, I am referring to the male situation, post treatments.

Prior to beginning my treatments, I submitted to fertility testing. I was encouraged to do this, as I was only twenty-two years old at the time, too young to really know what I wanted in my life other than beating cancer, but this step could be critical depending on side effects from my treatments. Unfortunately, fertility testing back in the late 1980’s was fairly “plain and simple” in methods, but came back, that I had no amountable sperm worth making storage worthwhile. Spoiler alert, had I known what would happen after my treatments were completed, I would have paid whatever I had to, just to store a single sperm. Hindsight is always 20/20.

Though I did not have the internet to rely on, I did hear stories of other survivors who had gone through similar treatments, and were still able to have biological children. I was told not to give up.

But it was soon after I completed my 8th cycle of chemotherapy, a study had been made public. One of the drugs in my chemotherapy cocktail, was a main culprit of sterility, Mustargen. This drug is highly toxic, but crucial when it came to treating Hodgkin’s Lymphoma at the time. To give you an idea badass this drug is, one of its alternative uses, when synthesized in gas form, was used in World War I as a chemical warfare agent. Though it was banned, that did not prevent former dictator Sadaam Hussein from using Mustard Gas on his own people during the Iraq War. As deadly as that derivative is, it played a vital role in saving lives as well.

The study revealed that male sterility was not only affected by Mustargen, but it would depend likely on how many doses received. I received 8 cycles of the drug. The study confirmed sterility likely at that amount. The study also confirmed that fertility could be spared with six cycles or less. Just my luck, I was only supposed to have six cycles, but it was recommended to ensure my remission, that I go through two more cycles of preventative chemo. According to the study, that was probably what sealed my fate of ever having biological children.

I struggled emotionally with sterility, as I really wanted to be a Dad. I would try other scientific means to have either of my wives (I am twice divorced), get pregnant, also to no avail.

An information meeting on international adoption is what convinced me, how I was meant, and going to be, a Father. A mother had just returned back from China, with her newly adopted daughter, “Lily.” She was such a precious and sweet child, and considering the ordeal of travelling from the only world she had ever known, it was clear that she had adapted to her life in the United States, and clearly loved her mother.

International adoption was the path that I chose to pursue. There would be too many hurdles going through the domestic path especially with my health, and with lawyers wanting to make their paydays. Adoption I would soon realize would help to make my dream come true, becoming a Dad. I would also recognize, that it was not the actual birthing process that was most important to me, but rather becoming a Father. Until that moment arrived, I did not know there was as difference.

Going through China, it did not matter that I had gone through cancer more than a decade earlier. All that mattered to China, was that I was expected to live a long, natural life. Up until that point, nothing was evident to the contrary, at least not for another five years and the creation of “Paul’s Heart.”

But there I was, in a crowded room, with nine other families that I had just met within the prior forty-eight hours. All of us were checking our cameras. Some paced the small area. All of us were waiting for that moment. And then it came. We could hear it, the sound of babies. Soon, ten families would be “born” or at least grow in size. This picture is the actual director of the orphanage where my daughter came from, and she is in his arms. I have to admit, this is not my photo, but one taken by another parent. But it shows the first moment, that I laid eyes on my oldest daughter.

And then, she was placed in my arms. For the first time in my life, I was holding a child, a baby in my arms, not just any baby, my daughter. I was a Dad.

Now, if you are able to feel my emotions at this point, this, this is the moment that I had referred to earlier in my post, the moment of becoming a parent. While I cannot express what it is like to experience or witness actual childbirth, I feel pretty sure, that the emotional realization of the moment that you become a parent, either through childbirth, or adoption, the emotions are the same. The whole experience of the journey to China and back is an entirely full story on its own. But it was soon after my daughter was placed in my arms, I wanted to give my daughter a sister. I would return two years later and go through the process again.

And so, my life went from being told I had a disease that had the potential to kill me to going full circle, not only surviving Hodgkin’s Lymphoma, but, becoming a Father, twice. And though I struggle with my health today, my daughters are my driving force to keep on fighting, no matter what gets thrown at me. No matter WHAT gets thrown at me.

Neither of my daughters were around during my Hodgkin’s days, but they have heard stories, and they have met two very important people in that part of my life, that they can now relate to what it took to get here today, my oncology nurse and my counselor who I leaned on so many times when I was at my emotionally weakest moments.

Today has several important recognitions to me in my personal life. But most importantly, my life changed forever on this date, almost two decades ago, the day I became a Father, for the first time. What a great ride it has been, and what I hope will be many more years to come.

33 Years And Counting


I really did not need the reminder. But there it was, loud and clear. Of course it was loud, it was my car stereo. I listen to my Apple Music source, which is loaded with over 10,000 songs that I have purchased over the last several decades. And out of those songs, the fact that this particular song came up today, of all days, is more than ironic and coincidental. It is a song that sparked controversy by a controversial artist. It was a song that came out in 1989, the same time I had begun my treatments for Hodgkin’s Lymphoma. In fact, back in those days, radio stations were notorious for overplaying their top songs, and this song was no exception. And I literally heard it, every day, on my way for my treatments, radiation and chemotherapy. Madonna’s “Like A Prayer.”

Today marks the 33rd year, that I took my last dose of chemotherapy, radiation completed prior, for Hodgkin’s Lymphoma. For those that understand, I was staged Nodular Sclerosing, 3b, not the worst stage, but pretty bad. I had completed 30 treatments of a ridiculous amount of radiation that haunts me to this day, and eight cycles (months) of some of the most toxic chemotherapy drugs, most of those drugs no longer used thanks to research and progress. Cancer anniversaries are determined by the individual, some on the diagnosis date, some on the date they are told that they are in remission. I count mine on the date that I finished my treatments.

It is amazing what I have been able to experience over the last thirty three years since. I have lost count on the number of cancer patients and survivors who have come in to my life. I would take on new challenges that I know I never had any original concept about prior to my diagnosis, patient advocacy. I took on a whole different direction in life, of course that was not by choice, and often times, having to fight for rights that I already had, and others that would eventually come. But the most important part of my thirty three years of survivorship, are the two days that I became a Dad.

I did not become a Dad by what some might call “conventional means,” because treatments left me unable to have kids. But the days that both of my daughters were placed in my arms for the first time, produced emotions that occur when a child is born biologically. All I wanted, was to become a Dad. But with cancer survivorship, nothing is certain. Time is not guaranteed. Yet, out of my thirty three years, my daughters have been there for seventeen and nineteen of those years. I got to experience so many things with my daughters, but most of all, I got to watch them grow.

It is hard for many to understand why I just “recognize” this day, and not celebrate it. Believe me, I do not take for granted what my longevity has meant. I know it is a huge accomplishment. But just as there were so many good things to come from my survivorship, so does some bad.

As I mentioned, I went through some pretty bad stuff between the radiation and chemo. Back in 1989/1990 (and before), medicine had no idea what would happen to survivors if they lived long after this magical “5 year mark,” if a patient got to that point. All that mattered, was that a patient got there. With Hodgkin’s Lymphoma being one of the highly treatable cancers, patients would be the first to discover what happened after five years, the hard way. And medicine was not ready for it either.

In 2008, I was diagnosed with a “widow maker” heart blockage, caused by my radiation therapy, requiring an emergency double bypass. The problem, no one was looking for it. Had it not been for my family doctor, on a whim, ordering a test that does not get done normally on a 42 year-old male, I would be dead. Over the years, more would be discovered about the progressive trauma my body had developed. This condition is not reversible.

The other thing that prevents me from celebrating, is the loss. Over the thirty three years, I have known too many who did not survive Hodgkin’s, relapsed – some, several times, and others develop similar late side effects as me. Many, just as I do, are still here, surviving. Others, sadly have passed.

Just this past week, one of my fellow survivors I know, passed away from complications of her Hodgkin’s past.

There is no rhyme or reason for who lives, and who passes. And there is no reason why, given such the high remission rate for Hodgkin’s Lymphoma, that so many should not live long lives, or decide who survives or who does not. This has left me dealing with something known as “survivor’s guilt.” No, I do not feel guilty for surviving cancer. I feel guilty because I do not understand what made my situation different.

In the end, I do not lose sight of what I have gone through, where I am today, and what it took to get here. I do not take for granted of all that I have and what/who means the most to me. I cannot celebrate when so many do not get that chance. But I do recognize that thirty three years ago, I had a choice to make. I made the right one.

And as I do every year on this day, I finish this post with an expression I have shared over and over again. For those battling cancer, “as I travel down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if you are not there yet, hurry up and get there. It’s a great ride!”

This “Left” Seems Right


Many times, I will get the subject of my posts from questions asked or comments made by fellow long term survivors. This will be one post, that not only benefits long term survivors of cancer, but those who have been fortunate to never have seen the inside of an oncologist’s office.

This is a very popular meme image that circulates around the internet. And since it fits in with my topic today, I thought I would make my own meme with the picture.

I am sure you have heard of the condition “reflux,” commonly referred to as G.E.R.D. (gastroesophageal reflux disease). It is the body’s reaction, a very acidic reaction brought on and aggravated by diet and stress. It is a fairly common condition, and its severity depends on the individual. Not sure if you have ever had to deal with it?

Comedian Rich Hall, gave a very clear and vivid description of reflux, using a term referred to as a “sniglet” decades ago on HBO during one of his comedic segments. A “sniglet” was simply a made up word, describing something that there was no other word for. In the situation of my post, he referred to a “vurp.” Care to take a guess at what “vurp” represented? It describes what happens with reflux perfectly, the combination of “vomit” and “burp” at the same time. If you have ever experienced this event, then you have had reflux at least once in your life. It is not pleasant, and the acidic aftertaste left in the mouth is just awful.

But there are those who must deal with this regularly. And its level of severity is determined by many conditions such as diet, stress, and other health conditions. Treatments can range from eating a diet with less acid (no tomato or orange products), or not eating fried or spicy foods, to daily routines such as not eating by a certain time of the day prior to going to bed or sleeping in a certain position, to using over the counter medications such as TUMS or stronger prescribed medicines.

A single event of reflux may not be such a big deal. However, if it is a situation that is repeated time and time again, it can be something quite serious. As I described above, if you are burping, and instead a small amount of vomit comes up instead of air, this is very acidic. We all had science in school, and know what acid does, eats away at things. Well, the more acid you have to deal with, the worse it will get. And for our bodies, in particular our esophagus, our throat, our mouth, and our teeth, this is a very bad situation. Because of the issues I deal with from my treatments for Hodgkin’s Lymphoma, this situation also almost killed me.

When most deal with reflux, it is often following a meal. We have an opportunity to do something about it, pop a TUMS or some other medication. Assuming we have not eaten just before going to bed, we are likely to stay vertical for a number of hours, allowing gravity to do what it needs to, to keep the stomach acid from creeping up into our mouths. If lucky, just a burp occurs or perhaps, a little bit of “vurp.”

If it advances to its worst timing, at night, while in bed, many problems can occur. Sure, your quality of sleep will be affected as you toss and turn, trying to get the GERD to stop. In my situation, I have two issues that I have to struggle with. Because of damage done to my esophagus from radiation therapy, I have a condition that not only traps food and particles in my esophagus, but also this stomach acid. This twice has led me to the emergency room with something called aspiration pneumonia, the trapped product bacteria gets breathed in to my lungs. My first episode of this, I went full septic, nearly dying. The other issue, is that I can actually “choke” myself out in my sleep as the acidic content fills my throat area. The problem is, I sleep through this event when it happens. So unless someone is around to hear me gasping, or my breathing gets interrupted that it startles me out of my sleep, the episode will not end well. Once I am woken up, it will be hours before I can fall back to sleep, and get the symptoms of the reflux event under control.

So, what can be done to help with this condition? Believe it or not, pretty much! As I mentioned, diet plays a major role. In spite of me being a picky eater, a condition that has me desiring the very acidic products that would aggravate the situation (tomato sauce, orange juice, buffalo wings, etc.), over the years, I have learned to do without these things. This does not mean that I no longer eat them, but it better well be damn worth it if I am going to pay the GERD price. And I do imbibe occasionally, and almost always will pay the price.

Stress, reduce and/or eliminate it. I do not need to go into detail. You know what this means.

Medications can help from over the counter TUMS and Pepcid to prescription level such as I have to take. Unfortunately, I am at a point where I take both, definitely not good to do, and certainly not as long as I have been taking them, nearly fifteen years now. But without taking them, this is not hyperbole, my quality of life is gone.

Timing, as I mentioned earlier, do not eat if you are going to be going to bed soon after. It is best to wait to go horizontal at least two to three hours, allowing for your food to travel where it needs to go, without coming back up.

And the final thing that can help with “vurping,” positioning. To prevent an attack coming on in my sleep, I have actually had to adjust the level of my bed, by about two inches, the headboard end of the bed only, so that my bed is in a downward slant, which allows for gravity to do what it must, to keep the acid where it belongs. All this takes is a simple piece of wood under each foot of the bed at the headboard. But, of course in my situation, this is not enough for me, and that is where the meme above comes in. This is also not the first time, the position that I sleep in, dictates my comfort level.

Back when I had my first heart surgery, done open heart through the breast bone, I was forced to lay on my back, just from the discomfort from the destruction of my chest and rib cage, not a position I normally sleep in. My favorite position has always been on my stomach. In the hospital, my bed was elevated, so being on my back did not bother me. Once at home, sleeping on my back did not work at all. And so, I began to lean to my left so as to change my position enough to get comfortable. A pillow would be placed behind me to hold me in that position. Seemed simple enough, just enough lean, not to be flat on my back.

Then terror struck. No, I had done nothing to my incision or rib cage. I felt as if I was on the verge of a heart attack, as if my heart were going to explode. The beat of my heart was pounding against my rib cage. I began to panic. I removed the pillow from behind me, allowing me to return, flat on my back. Odd, the pounding stopped. I really cannot explain why I did what came next, but I leaned to my left again. Again, that pounding had returned, and I leaned back flat again. Ok. This was weird. But at least I no longer thought I was having a heart attack. Now I was curious. I decided to lean now to my right. This time however, there was no pounding. I would return to my back, and once again, turn to my left. Sure enough, the pounding resumed. Flat, nothing. To my right, nothing. So I was not going to make an emergency phone call or a trip to the emergency room, but clearly someone forgot to fill me in on a very important detail. What the Hell was done to me, that my heart “shifts” when I go to lay only on my left side, that it feels as if it is touching my rib cage, making me feel as if I am sleeping on a bass drum?

An article on “healthline.com” explained that the apex of the heart being closer to the wall, when sleeping on the right side, the mediastinum (a thin lining), holds the heart in place separated from the lungs. Sleeping on the left side, the heart will shift slightly. Combined with my surgery, and things likely moved around internally, this is exactly what was happening. Though it has been studied, the website did not cite the study, but expressed that according to ECG (electro cardiogram) readings, there was a noticeable change in the heartbeat, when laying on the left side, and none, when laying on the right side. There is nothing reported if side sleeping is dangerous or not, nor does it contribute to any kind of heart ailment. For the purpose of this post, that is where I am ending this part of the left side sleeping discussion.

With reflux impacting my sleeping position, I found another discovery about me sleeping on what has become my dominant position now (with me ignoring the pounding heart beat). In spite of the prescription I take, watching what I eat and when, and position of the bed, all too often, that has not been enough for me to get through a night without either choking myself out from the rush of stomach acid, or worse, as mentioned above, developing aspiration pneumonia. I have found, sleeping on my left side, I do not have episodes of reflux. When I begin my night trying to sleep on either my right side, or even attempting my stomach, flat on my back has never been a consideration, my reflux fires up, and sleep is impossible. The problem for me occurs, if I successfully fall asleep on my left side, and if I fall deep enough, I have a tendency to roll flat on to my back, and then, you guessed it, my reflux acts up. This becomes a major issue, because I do not always wake up when this happens, hence, not until I am basically choking on my vomit, I normally wake myself up. If I am lucky, someone hears the gurgle and gasping for air before it gets worse. Once awake, I end up, getting up from the bed, going into the living room, and sitting in a chair for the next few hours, trying to get my chest and throat to settle down.

So of course, I am curious about the “left side thing” in regard to my reflux. According to a the NIH actually confirms the difference between sleeping on the left side versus the right side( https://pubmed.ncbi.nlm.nih.gov/26053170/ ). One hypothesis holds that right-side sleeping relaxes the lower esophageal sphincter, between the stomach and the esophagus. Another holds that left-side sleeping keeps the junction between stomach and esophagus above the level of gastric acid ( https://www.nytimes.com/2010/10/26/health/26really.html ).

There you have it, something from a long term cancer survivor that can actually benefit someone who has never had cancer, but has the nasty torture of reflux and lack of sleep. So yes, if I am laying on my left side, this is exactly what I am thinking about as I go to sleep.

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