Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

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.

A Super Side Story


(apologies for the delay in this story, but life happens.)

As many who have no vested interest in the Super Bowl (meaning my team was not playing), I am prone to want to pay attention to the extra stories that occur over the two weeks, and the game itself. This is a tradition that began for me back in 2006, when the Seattle Seahawks (my team) went to their first Super Bowl, and I completely missed the game, as I was in the process of adopting my youngest daughter. Every year, as Super Bowl rolls around, regardless who is playing, including the two additional appearances by the Seahawks, the first thing that always comes to mind, is that trip all the way around the world.

This year’s game, had many special stories behind the game. There was the first match up of biological brothers playing on opposite teams. This story so entertaining, even their mother, any time she was seen, was wearing “split” clothing, representing both the Philadelphia Eagles for her son Jason, and the Kansas City Chiefs for her son Travis.

There was the historical milestone of having two black quarterbacks starting the Super Bowl.

And then, there was the fact that the head coach of the Chiefs, at one time, had been the coach of the Eagles, and while haven gotten the birds to the Super Bowl, the did not win. “Big Red” as Andy Reid was known by, soon found himself out of favor with the fans, and the team, landing in Kansas City, where he won his first Super Bowl as a coach last year.

But the most special moment for me, occurred at two separate moments, both before the game had begun. The first happened in the hour before the game, an interview was held by former New York Giant Michael Strahan, with Buffalo Bills Damar Hamlin, who gained unintended fame having collapsed on the field, during a game between the Bills and the Bengals near the end of the season.

After some questions to Hamlin about how the day began, and what was at stake, Strahan then asked a most difficult question. I am paraphrasing it, as this happened to be an emotional moment for me watching this interview, explanation will be coming shortly, “what went through your mind, as you got up after making the tackle, only to collapse right after.” Hamlin responded that he was not able to answer that question yet, as tears started rolling down his face.

Of course, the question was likely to provoke a response about the sudden blackout, fear, helplessness, and as his heart beat stopped on the field, would he have had any memory of that moment? The interview ended soon after that.

Whether for good or for bad, when the body decides to allow or disallow memory of certain trauma, whether remembered or not, often stirs an emotional upheaval, none felt like ever before. While I will not speak for Hamlin, myself, a cardiac patient as Hamlin, I often still struggle with my emotions every since my first major open heart surgery almost fifteen years ago. And I cannot explain it. I do not personally remember anything after the oxygen mask had been placed over my mouth. Reading the surgical report, I know my heart had been stopped, drained of its blood so that the surgery could be done. And then my heart was filled back up with blood, and restarted. I offer my apologies to my surgeon as it was really way more complicated than I made it sound. But my point is this, I remember nothing about what happened, once I was put under anesthesia until I came to after the surgery. And yet, whenever I witness or hear of someone else go through an experience with the heart, or cancer, I lose control of my emotions.

As I write this post, I am aware of a fellow long term Hodgkin’s survivor like me, going on over a month now since his heart surgery. He is also facing new emotions as he struggles with his recovery, as well as the trauma of what his body had been put through.

When Hamlin is ready, he may finally discuss what he has been feeling, struggling with. Maybe his won’t. But one thing that I truly admire about Hamlin, like many other survivors, they take the experience of that traumatic event, and try to make something good come of it.

Hamlin is alive for only one reason, CPR being performed on him, almost right away. Time is the most critical when the heart stops beating, and medical personnel were able to begin CPR right away, buying the time necessary for better methods to be employed, eventually saving this young man’s life. It is truly an inspirational story, fan of football or not.

And so, the second moment of yesterday’s telecast came, during introductions of the game, many medical personnel who tended to Hamlin, and training staff from both teams were all introduced on the field. And yes, it was predictable, but wow, what a powerful moment, Hamlin was introduced, and embraced all who were there. Yes, the tears were not only falling, but out of control for me. Hamlin was wearing sunglasses, but anyone watching knew what was happening in that moment.

I reunited with my hospital caregivers a couple months after my emergency bypass had been completed. I wanted to let them all know, their care was responsible for saving my life, and I was not only going to live, but make the most of my life, and I would forever be grateful for the care that they gave me.

In the meantime for Hamlin, he is using his “event” to raise awareness and advocate for everyone to learn a newer version of CPR, his life definitely being saved from someone immediately able to perform CPR on him after he collapsed. As anyone knows, timeliness is critical in reviving someone whose heart has stopped.

The newer procedure for CPR came about for several reasons, from reluctance due to Covid-19 risk and sadly homophobia in some cases, to discovering that chest compressions were more critical to keep blood flowing until emergency personnel arrives. The American Heart Association now recommends up to 120 chest compressions per minute, and if possible, using a chain of rescuers. Even if you have never performed CPR on someone with the older method, and just been certified using a “dummy,” performing chest compressions for a long period of time, combined with the emotional adrenaline, can be exhausting.

But learning this new technique, is not only easier, it just might make a difference when you least expect it. Like in front of 65,000 fans during a football game.

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