Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

16 Mar 2023
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When The Quiet Part Gets Said Out Loud


A message from me… I actually wrote this post a couple of weeks ago. But events kept happening, making me feel it would be inappropriate to publish this post at that particular moment. As it turns out, the timing could not be any more relevant to understand the reality of a long term Hodgkin’s Lymphoma survivor. As this is being posted, my thoughts are with many survivors who are struggling with their survivorship as their bodies are forced to endure even more trauma. One survivor has spent more than 200 days between hospitals and long term care facilities recovering from his heart surgery. One survivor has spent more than two months in the ICU recovering from his heart surgery. Another survivor is heading into her third week recovering from her heart surgery, still hospitalized. And just yesterday, a fellow survivor was rushed to the hospital, in critical condition, a situation, just like the other three survivors, all created by the treatments for Hodgkin’s Lymphoma that we were exposed to decades ago. This post is about our reality. This post is about not being all Pollyannic with denials of “you don’t know that for sure,” or blanket “you’ll be fine if you just don’t think about it.”

I always say that if my words reach even just one person, then my efforts have been worth it. So, I hope you read this post, and come away with understanding, just how some of us long term survivors of Hodgkin’s Lymphoma, struggle with, and deal with, what we know, and many accept. We have to. Otherwise there is so much we would miss.

There is an expression, “saying the quiet part out loud,” used by Mr. Burns in an episode of the Simpsons (“A Star Is Burns”). This is a reference to revealing one’s thoughts currently in the head, that should be kept there, instead, spoken for anyone within ear shot to hear. You hear the phrase used quite often today, especially in politics, when a particular political party representative, in discussing policy, accidently reveals their true intentions, admitting either their knowledge or attitudes toward a particular agenda.

But in the world of long term cancer survivorship, “saying the quiet part out loud” has a different meaning. It is something that rarely if ever gets talked about, recognizing our increased mortality. I want to caution you, while the subject infers something quite uncomfortable, something normally kept quiet, unsaid, as a recent event showed me, it really is not all that bad. I want to stress, this has nothing do with manifesting anything to happen, or shouldering any bad juju.

I was participating in a Zoom session, with the guest speaker having been a fellow long term survivor, offering her perspective of survivorship. There are so many of us living decades after completing our treatments, and I know many of them over thirty of my thirty-three years of survivorship. We all have different experiences. In this case, the guest speaker said something, I can say I at least think of every now and then, though I do not recall ever hearing it out loud. As I heard it, I felt a powerful wave of relief come over me. For the first time, I knew someone felt as I did, that my feelings were normal. I had just never heard it before from someone else.

I am paraphrasing, “I know that my life expectancy is going to be less than I hoped, and I am okay with that.” The speaker was making reference to the fact, just as I an other long term survivors of Hodgkin’s Lymphoma, that she had developed late side effects from the treatments that gave her remission. The body can only handle so much trauma. She, others, and myself, have gone through similar and different experiences, many severe, many life threatening. And each issue, the risks of complications and mortality increase.

Anyone who has ever heard me talk about this, usually responds with the typical, “you don’t know that” or “you’re fine, you’re going to live a long life.” Exposing myself, I risk being ridiculed with, “don’t be a negative ‘Nelly'”. The worst comment you can make to me, “you’re living your life in fear, how awful.”

To be clear, I am not talking about dying, or actively dying. You have likely heard at some point in your life, “smoking cuts so many years off of your life,” or “too much cholesterol can result in less years,” etc. No one every really questions statements like that because of where that information and support comes from. But when you receive forty times the lifetime maximum exposure of radiation, or the most toxic of chemotherapy drugs (especially a drug that was used to kill thousands of people by Sadaam Hussein during the Iraq War), it only makes sense, that these treatments will have an impact on longevity.

In my 33 years of survival, I have met so many fellow survivors, some in person, and some through the digital world. Now I should preface the rest of this post. I honestly do not know many long term survivors of Hodgkin’s who are not dealing with late developing side effects. And there are two potential explanations. The first, people only reach out for help or answers, when something is wrong. If you do not know you have these issues, then you have no reason to look for others like myself. The second possibility, a survivor might actually be someone who has not developed any late side effects, or at least associated the unusual and unexplainable ailment they might be facing. And this is an important acknowledgement in my post. Here is why.

Twenty or so years ago, when I first came on to social media, the majority of my time spent on line, pertained to helping patients who had been going currently going through treatments for Hodgkin’s, not so much long term survivors. A reminder, I myself, did not know I had been developing late side effects yet at that time. Following the first crisis event of my survivorship, my emergency open heart surgery in 2008, I turned my attention to long term survivorship care and knowledge, while sharing time with current patients.

I had remained in communication with many patients who had “moved on” with their lives, against my advice, after hitting the “magic 5 year mark,” and saying good-bye to the cancer world forever. As years passed, it became more apparent to me, just how prominent these issues really were in survivorship. But for those who chose to move on, I kept my conflicted emotions to myself as those survivors shared their “new life” experiences, many exploring places that they, or I, had ever seen.

Then, I would see a post come through for a page, not from the survivor, but a family member. Someone had died. They were out doing one of their nature hikes, as they had done often before, and had a heart attack. In the example I am setting, which really happened, he was only in his 30’s, younger than me when I had my first heart surgery. But he was fit, active, and too young to die. There was never an answer as to what may have contributed to his passing, but those of us who have been in this survivor world, know the likely contribution, was the high and toxic doses of cancer treatments, unmonitored.

Another situation that increases our risks of long term survival, are spontaneous events, such as a car accident, or dare I say it, a pandemic. Those of us exposed to such toxicities, need to realize our bodies have been traumatized, leaving ourselves as able to fight and recover from any particular situation, even as simple as a stumble and fall, the way someone who had not been exposed to cancer treatments. One survivor I knew, had been in a car accident, suffered a head injury, with bleeding. She had actually recovered enough to be ordered released from the hospital, only to suffer something else that had occurred during the recovery, and died.

Then of course, there are the procedures after procedures that many of us endure. If we survive long enough after a particular correction (such as a heart valve replacement), to need it done again, the risks become even more complicated, making recovery more difficult. What would normally be a few days in the hospital recovering, could end up months between multiple facilities healing, hopefully. It is hard going through any surgery for a long term survivor once, let alone again, and again. And if we are dealing with doctors who are unfamiliar with our situations, the risks skyrocket.

Finally, there comes a time for many of my fellow survivors, their bodies just simply have enough. The trauma to the bodies over the years, just too much to handle anymore.

Many of my fellow survivors share a “memorial” page, where we have photos of those long term survivors who have come into our lives, and passed. Their passings could have been due to complications of procedures, spontaneous non-cancer related occurrences, or simply, their bodies just had enough. It is a beautiful page, with wonderful photos of a special time, showing how in spite of all that they were going through, they enjoyed every day that they could.

I know this post has been hard to read. But this is the life my fellow cancer survivors and I live. And with that, comes the acceptance part, that we know that we may not live as long as we once thought. We do what we can to take care of our issues that come up, and we hope for the best. We do not spend our days, waiting for the end. I have things that I still want to experience in life, mostly with my two young daughters. I do not put the pressure of long term goals on myself, but I go to bed each night, with the intention that I will have tomorrow, not worried that I might not see tomorrow, the cliche “one day at a time.”

It is the acceptance that I have found, that allows me to not live my life in fear. And that is why, it is actually hurtful, when I get told “you don’t know you will die sooner” or the denial “oh, you’re fine.” Though clearly I wish things were different, I am actually in a good place, comfortable with my fate, and what I have been able to experience in over 33 years, that had I not opted to go through the treatments, I definitely would not be writing these posts today. But that is why, it is oh so important, that you accept how I feel, not try to talk me out of. Do not feel sad or worried for me, because that is not my intention for writing this post. But I do want you there, for all that I still am able to experience in life.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
14 Mar 2023

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.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
25 Feb 2023

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.

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

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