Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

18 Jan 2023
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Instead Of Resolutions


Before Mr. Big died of a heart attack while riding a Pelaton (a fictional situation for a very popular women’s television show, shocking viewers all over, and the reaction shocking Pelaton), there was another exercise machine that could have been a killer in real life for me. Yes, it was one of the two pictured above. I have used both in the past, and now, only one of those machines unless I am ordered to use the other.

Like many, the new year annually brought me to want to make a resolution to get/stay in shape. Crazy thing called life constantly interrupted that resolution, and it would be forgotten. In 2008, I made a promise to myself that “this is the year I am going to stick to it.” I had even bought a full year membership at the local gym. Surely I would not waste the money letting my membership sit idle.

And soon after the new year, I began my annual quest, the same as every year before it, gradually working my way up in repetitions, sets, and time. I really gave no thought to how I felt physically as I began each workout. But by the beginning of April, that’s right, I was now a full month longer than my exercise plan had lasted in previous years, I began to notice something nagging my body, a reminder that the last time something occurred during my workouts, I was diagnosed with Hodgkin’s Lymphoma. But this time, felt different, and it actually hurt.

I preferred the eliptical machine as it felt more of a workout than just going at it on a treadmill. I seemed to burn a lot more calories, and my endurance seemed to hold up pretty well. There was only one problem. As I grabbed the sensor paddles on the handles, and began to “step”, my heart rate registered on the screen. 80. 110. 135. 150. In less than 45 seconds, my heart rate had peaked at 152. I was out of breath, and had an extreme tightness in the left side of my chest. But as it was just tightness, and not pain, unimaginable pain (according to my later father who actually suffered an extreme heart attack), I was not panicking. I was just annoyed.

I slowed my pace down for a few seconds, my heartrate began to come down, and that tightness dissipated. And so I picked my pace back up, since I was comfortable again. Again, my heartrate also climbed back up above 150, where it remained for the remainder of my hour long routine. After that, it was over to the weights side of the gym for the strengthening.

Within two weeks, I would make a call to my family doctor, complaining about this daily situation with the chest tightness coming and going. Within 36 hours of that call, I was on a table having emergency bypass surgery. You can read the whole behind the scenes of that process, from beginning to end, on the page titled “CaBbaGE – Not Just A Green Leafy Vegetable.” But for this post, all you need to know is this. I had a 90% blockage of the main artery going to my heart. It had nothing to do with my age, or my diet (though many would like to say that did not help the situation). The treatments for my Hodgkin’s had progressively destroyed my body over the years, undetected, until I made that phone call. According to my cardiologist, and I quote, “it was not a question if you would die, but when.”

So, spoiler alert, I survived the surgery. The hardest part about the recovery, was that I expected my physical conditioning prior to the surgery, to have been a benefit in my recovery. Instead, in just a week since the surgery, no, less than two days in the hospital after the surgery, lying in the intensive care unit, I had lost all of my conditioning. But as time went on, and I would get cleared to begin cardiac therapy, and eventually physical therapy, I wanted to focus on getting back into shape.

Yep, that meant I went back to my annual resolutions, with the usual results. But now the interruptions were not just because of failure of commitment, but additional health issues that kept breaking up my routine. Plus, I really was not feeling well even as the years went on. There was still more damage to my heart that needed to be repaired.

My third and final heart surgery (final meaning for the time being as all the surgeries are likely going to need to be done again), an aortic valve replacement, occurred a little over a year ago. This surgery was completely different, as it was not invasive or as destructive as my original bypass surgery. The whole process of this surgery allowed for a quicker recovery as well. Of course, I went through cardiac rehab again, and as soon as I was cleared, I went back to strengthening.

If there was one thing that I credit to my survival of that original bypass surgery, was my conditioning at the time. I would not discover until years later, the risks, and the protocols that came with the surgery on a Hodgkin’s Lymphoma survivor. But I believe my body was able to handle the trauma of that surgery, giving me the chance to recover, and regain my fitness. And following this last surgery, having not lost any of my strength or stamina, I was ready to move forward. I know I needed to be smart about this. My heart has been operated on three times, and each time, becomes more of a risk.

January of 2021 was the perfect time for me to be cleared to exercise. No one can ever make an accusation of me ever becoming a bodybuilding champion, but I really wanted to be in a good condition. I know that there will come a time, when I need to have any or all of these surgeries again. If I am to have any chance of survival this time around, my body needs to be in the best condition I have ever had it in.

But unlike the other years, years in which my exercise regimens were driven under the guise of a “resolution,” I made this a lifestyle commitment. There has been only one obstacle to this commitment, Covid. Because we are at a point in this pandemic, people have their own ways of living with the pandemic, some with concern for others, some without, I knew that there were times that someone infected with Covid, chose to ignore the safety of others, using the gym. So, on multiple occasions I had to make the choice, to avoid the gym for a couple of weeks, assuming that these individuals were also of the mindset to not wipe down the equipment either. As I begin my second January of this continued routine, I do feel that my body is in a decent enough condition, should I face another major health challenge.

I would say that I have done all that I can. But those around me would argue that I should do the same with my diet, make that more healthy, which I have not been able to reconcile as being a benefit enough to make the commitment. Basically to do it now, would be nothing more than making a resolution. And I do not have decent track record with resolutions.

And while during cardiac rehab did “force” me to get back on the eliptical machine, the panic attacks, I was able to keep under control. But on my own, I do not have the intestinal fortitude to use that machine again, unsupervised. I won’t let that be my “Pelaton.”

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart
15 Jan 2023

A Relatable Perspective


When a particular resource comes across my feed, I always want to share it here, as it definitely will help some, if not many. The link I want to share today comes from a TED “talk.” TED is a non-profit organization hosting expert speakers to give short, influential and inspirational lectures. Admittedly, I do not make a habit of watching them, as most of the topics involved subjects that do not concern me. But this particular “TED talk” hits a personal note for me.

Suleika Jaouad is a young writer, speaker, and advocate, and by young, only in her 30’s, who wrote her column, “Life Interrupted” for the NY Times, as well as a book titled, “Between Two Kingdoms.” The link that I am going to share, comes from a TED talk that she gave several years ago titled, “What Almost Dying Taught Me About Living.”

Ms. Jaouad was diagnosed with leukemia back in 2011 just after graduating college, about the same age as I was diagnosed with Hodgkin’s Lymphoma, she was given only a 35% chance of survival. Spoiler alert, she had achieved remission and seemingly had gotten back to living, something all too familiar with cancer survivors. And just like many of us fellow survivors, it was not the kind of “return to life” that we had been expecting. And that is what her talk was about.

The talk is just over seventeen minutes long (with commercials), but filled with so much insight and understanding of the mind of a cancer survivor, I know from watching, I still have things to learn even about myself, nearly 34 years out from Hodgkin’s Lymphoma.

She speaks of her four year battle, yes 4 YEARS! Instead of pursuing her career in journalism, she spent those years becoming an unofficial medicinist, someone forced to learn what is going on with their body medically, and what needs to be done. She talked of people treating her differently, that any concept she may have had about her future, would never be the same. She talked about total loss from employment, a place to live, and something hard to imagine as an adult, the loss of independence.

And then she struck the first nerve with me, when she spoke of associating with other cancer patients, because that was the world she was a part of now. Something only a cancer survivor or current cancer patient can appreciate, even finding humor or entertainment, even among the difficulties of treatments.

Ms. Jaouad’s lecture was not entirely about her cancer journey, and for what was probably the longest years of her life, she only committed approximately three minutes of the seventeen minutes to her battle. She then turned to survivorship.

Upon entering the survivor stage, getting into remission, the people around us have changed. Just as we may have been treated differently during our treatments, how we get treated after treatments, will also change, and not always for the better. We get anointed with unsolicited titles such as a warrior or described as courageous, brave, or inspirational, likely better of a person for what we had been through. When I heard her mention that last part, I was like “wow, I dislike that even more than I originally did when I first heard it years ago.” While similarly I think she and I have in common, cancer definitely changed out lives, it is hard to say if it should even be judged as if it was for the better. Who is to say there was anything wrong with us before we had cancer?

Life after that final treatment, after a patient is in remission, is never, and will never be the same. I wish this would have been explained to me over thirty years ago. Clearly, patients still are not being prepared for that today. Because that is at the heart of Ms. Jaouad’s lecture.

Ms. Jaouad states that labelling us with the title of warrior, or portraying survivors as some sort of Hollywood story of success, one of which we should be grateful for, actually does more harm to us, rather than encourage us. And I would agree, even all of these years later, I am uncomfortable being told I am an inspiration, surviving decades like I have. Because the truth is, too many do not, and it is hard to justify who is lucky to and who does not. And this by no means that neither Ms. Jaouad or I are not grateful, we definitely are, but this is the foundation of what is known as Survivor’s guilt.

Relationships permanently change even if they remain in tact, by the thinnest of threads. But there is one relationship that seems to withstand the cancer experience, and that is the bond that cancer patients and survivors make with each other. I often use the expression when talking to other patients or when dealing with other situations, “I understand” as opposed to “I know”, because even if I am talking to another person with Hodgkin’s Lymphoma, their experiences are still different from mine. There is no way for me to know how that person is feeling inside. But I can understand.

Then there is the physical toll on the body. It takes a long time for the body to recover from the immediate side effects of the treatments. And then, if you have followed my blog for even just a few months, that toll continues to grow even decades later. The body NEVER recovers. Again, not that it would have changed my mind to go for cure or not, but it would have been nice to be able to try and prepare mentally. And according to Ms. Jaouad’s story, decades later, patients are still not being prepared for this reality, the inability to maintain a full time work schedule, frequent absences, and risks with other employees who come to work sick, exposing the compromised survivor’s immune system, more susceptible to illness.

Emotionally, patients STILL to this day, are not encouraged to get emotional help to deal with their fears of relapsing, grief, and yes, PTSD (post traumatic stress disorder), yes, the same disorder that most people think only those who go to war can develop. Cancer survivors, survivors of any traumatic event, car crash, earth quake, Covid, can develop PTSD. Yet, we do not prepare the cancer patient and survivor.

Ms. Jaouad then finishes her lecture about wanting to make her survivorship matter. I cannot speak for her limitations, but it is likely, like me, she cannot donate blood or organs. I know I will never discover anything important. I want to make my survivorship matter. And that is why I write “Paul’s Heart”. That is why I am still active counseling cancer patients. That is why I participate in forums all over social media in regard to health care and survivorship. That is why when I give speeches on survivorship, I write a new speech for each one, because in between speeches, I have learned something new about myself, and my survivorship. My hope, my wish, is that I reach just at least one person, and it makes a difference. To my last breath, this is how I live my life.

My relationships, which there are many, but very few that are not cancer related, are important to me. I meet and keep in touch with as many fellow survivors as I can, not just because I care about them, but because I know that if the time came, that I needed some unquestioned understanding, it would come from them. I am not knocking my family or close friends. That is just the way it is.

Please watch the video link. I promise you, you will get much more, listening to her own words. Even better, I now have another book I need to read, “Between Two Kingdoms.”

Ms. Jaouad married Grammy winner and former Late Night Band Leader Jon Batiste a few years ago. Sadly, Ms. Jaouad relapsed in late 2021, going through yet another transplant and more treatments. I have begun to see more stories about her and the life she has gone through, and continues to. But if there is one thing that is obvious from watching her video, she knows what it takes physically, and mentally to get through it again.

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

It’s About The Human, Not The Game


This morning, many of us, are getting an unexpected anatomy lesson of the heart. Though the catalyst occurred as an injury during a professional football game, the discussion around most breakfast tables and office water coolers is much more consuming.

Last night, the Cincinnati Bengals hosted the Buffalo Bills, in what was considered an unofficial “playoff game” with the end results affecting playoff positions for each team. In what looked like a normal tackle that football fans had seen thousands of times before, would soon become an event that no one would ever forget. Upon completing the textbook tackle, Bills Safety Damar Hamlin got up, as if to prepare for the next play, and suddenly fell backwards, unconscious. Hamlin is just twenty-four years old. And I use the verb tense “is”, because although reports claimed he went into cardiac arrest following that tackle, and needed CPR, and was revived on the field of play, he is currently being treated, in critical care. Everyone is concerned for this young man, and hopefully his full recovery.

Young man. Heart issue. Where have I heard these two phrases together before? Oh, that’s right, as I laid on an operating table at the age of 42, preparing for emergency bypass surgery for a fatal condition I was unaware I had, caused by treatments for my Hodgkin’s Lymphoma eighteen years prior. Since 2008, I have had two more additional heart surgeries, and will likely undergo more in the future. My purpose for stating this is not to say I am an expert, as I am not, is not to compare the situations, as they are not similar, but to say, I understand what is being explained as to what happened to this young football player.

Again, the play itself looked fairly routine, even if a bit more high energy, because it looked like a big play was being stopped. But as powerful as the heart is, its activities are often silent, or unknown to us. We go through our daily activities without giving the beat of our heart a second thought. It is something that just happens. But as myself, and plenty of other long term survivors of Hodgkin’s Lymphoma will tell you, there is so much more to the beat of a heart, and the various conditions that can exist. Unlike the normal and healthy human being, and perhaps the unknowing human, we are more aware of our heart’s condition.

I am not going to get too technical, as even I will get lost. But the heart has a basic rhythm as pictured above. There are five components, called waves, labelled P, Q, R, S, T. I honestly do not understand the mechanics, but I do know, that if there is an abnormality on your EKG, you will get attention. I do know that in my case, and ALWAYS gets a lot of attention from doctors unaware of my condition, that I have what is called an “inverted T” wave. As you can see from the picture below, compared to the one above, this is not a normal condition.

This “inverted T” wave can be a serious issue, as it is often a sign of what is called “ischemia”, a blockage, or what would likely result in an event of a stroke. Again, not going too deep into the weeds with this. Just know this, this inversion, shows that there is a potential effect on the blood flow through the heart. And this is where Hamlin’s tackle comes in to consideration.

It has been explained by various medical experts on various news programs, that a potential hit to the chest area, during this “T wave” part of the heart rhythm, could impact the flow of blood through the heart, and yes, causing cardiac arrest. While it has not been specifically stated by the Hamlin’s doctors, the speculation is that this “perfect storm,” the tackle and the stage of the heart beat, is what happened. There will likely be more discussed on this, days from now.

Nonetheless, the horror of watching any athlete collapse to the ground, is something we as fans just do not get over. But this time is something different. I recall watching the game where Washington Redskins quarterback broke his thigh bone during a game. I was watching both Jets and Lions games, when Dennis Byrd and Mike Utley were both paralyzed following collisions with their helmets (separate games). Even recently, with all the concussion injuries, these titans still manage to convey to us, usually with a “thumbs up” as they are carted off the field, this situation was different. Whether at the game or watching it on TV, this was different. Hamlin was unable to communicate with us. Everywhere you looked, fellow players, on both teams, were in tears. These seemingly tough guys, though trained to play through all kinds of pain and conditions, were suddenly witness to something, no one could have prepared for.

Of course, the conversation has begun on safety and just how common a situation this might actually be, even if occurring for the first time with the NFL. One news network actually stated a more common occurrence among teenagers aged 14 to 15, involving either a baseball or hockey puck to the chest. Stop and think about that, we hardly, if ever, hear about that. This situation can also occur during an auto accident. This cardiac phenomenon is called “commotio cortis”, caused by a sudden impact to the chest leading to cardiac arrest.

There are plenty of movies that innocently, and often times comedically show a recipient of a chest punch, gasping for air, with the assailant explaining “you will be alright in a few minutes.” One has to wonder with all of the boxing and MMA fights, we have not seen or heard of this before. I know with my own situation, a wired breast bone from my open heart surgery, I have always been sensitive to any impact to my chest for instance, wearing a seatbelt, knowing that in an accident, my breast bone could snap and damage my heart. And do not get me started on the act of CPR on me, if necessary, as it was explained to me how common it is, for ribs to get broken while CPR is being performed.

But this was such an unusual occurrence, and tragic. Hopefully Hamlin will recover fully, only time will tell. And unlike in 1999, when professional wrestler Owen Hart fell to his death from a rapelling accident during his entrance to the ring, and the WWE continued its Pay Per View after Hart had been taken out, the NFL did the right thing, and postponed the game.

We do not know if Hamlin had any other cardiac issues. Like me at 42 years old, why would anyone suspect a 24 year old to have any heart issues? Why would any of us suspect to have anything wrong with us? But the truth is, it can happen, and depending on the circumstance, that is when we find out there is a problem. And for some it can be too late.

My thoughts are with Damar Hamlin, his family, and his teammates and wishing for a full recovery.

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

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