Paul's Heart

Life As A Dad, And A Survivor

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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
13 Jan 2023

Going Home


It was a surreal feeling. I was being discharged from the hospital, back in April of 2008, after having a life saving emergency double bypass for a “widow maker” blockage of my heart. I was 42 years old. This was when my life, and my health, would change forever.

I was too young for this to happen. Everyone was saying it in the operating room. I heard them before I fell asleep from the anesthesia. When I awoke, I was attached to several machines, one of which was doing my breathing for me. As time would pass, and I would be expected to begin moving around, I discovered that in less than 48 hours, I had lost all of my strength from being confined to the hospital bed. I had countless people making a fuss over me, from techs taking blood, nurses monitoring vital signs, and of course, plenty of visits from residents, and therapists, physical and mental. My life would never be the same.

A hospital chaplain had even come into my room the day I was discharged, not to preach to me or spread Gospel, but just to prepare me mentally for the possible emotional waves I could (and did) face, to understand they were real, more importantly, normal.

It may sound cliche, that as I was rolled out of the hospital in a wheelchair, climbing into my car, as a rare passenger, not the driver, but I did feel as if I had a new start. Physically, at least as far as my body and looks, they were still the same, but everything else about me felt different. Though not consciously doing it, I could tell that things were appearing to me differently, giving me a new sense of appreciation. I was noticing details on the ride home that I had never seen before, or had not remembered in a long time. I guess this would be where the reminder “remember to smell the roses” would apply.

I could walk. Clearly I was weak physically. My mind was clear. I knew that I was about to die, and the steps it took for the doctors to save my life. And I wanted to do all I could, to recover fully, and quickly.

I had not seen my golden retriever Pollo in almost a week. We had never been away from each other. On an average day, upon my arrival home from work, he would get up on his hind legs, front legs on my shoulders as if to give me a hug hello when I came in the door. I had no idea what to expect when I walked in the door for the first time at that moment, but I was definitely concerned that I could not survive a full-on “where the hell were you” excited ambush from him. What I got instead, surprised me, but then solidified the best friend I knew that I had in him. As the front door opened, he stood in the kitchen doorway, perhaps with that “look, (where were you?)” which quickly turned to “glad you are home,” as he calmly walked up to me, circled around me, and then just stood against my left leg. He “knew” something had happened and was not right.

From there, I positioned myself on our couch, and my (then)wife turned on the television, so she could catch her daily soap opera. I have seen these two shows in particular over time, when I could not avoid it, and this was one of those occasions. I never pay attention because the story lines are all the same, for some reason, until now.

In this particular episode, one of the characters, a woman, was having open heart surgery. Very quickly, it became too much for me emotionally. I lost it, completely breaking down. My wife came rushing into the family room, “what is it?” I could not even get the words out, just pointing to the screen, but even she was not able to understand what I was trying to get out. I had never felt this way. But seeing on television, albeit in lesser detail, what had literally just been done to me, was too soon. I had my first flashback from the surgery of many. Welcome to the world of PTSD, post traumatic stress disorder. As I found out, PTSD did not just affect soldiers of war.

My first few weeks at home, I had a visiting nurse, documented my vital signs and weight, and as instructed, went for daily walks. Unfortunately, as I went for those walks, which happened to be along a main road which led to where I worked, and would now be out sick for a lengthy period of time to recover from my surgery, several of my co-workers spotted me. They decided to notify management that they had seen me, that I looked “great,” and were frustrated that I was not back at work yet, clearly “milking my absence” according to them.

Now it should be clear, the orders to return to work, were 3 to 6 months post surgery, and that was between me and my doctor, and the health services/HR department at work. This was day 3. While cardiac wise, an average patient might return to a less physically demanding job in three to four weeks, I had a very physically demanding job. And with one major issue that complicated my healing process, a history of radiation therapy to the chest area, and a freshly cracked open breast bone for the surgery, that breast bone would take additional time to heal. I knew that because my doctors told me that. Evidently some of my co-workers felt they needed to know this information as well. But even then, they were judging me on my shell, what the only thing they could see about this situation, since my heart and breast bone were internal, I looked great on the outside, now get back to work.

It actually got worse with my employment as time went on. Although I was protected by both the Americans With Disabilities Act and the Family Medical Leave Act, that did not stop me being sent a termination of employment notice less than the minimum three months ordered by my doctor, unless I returned to work, as the protection of the FMLA had expired. Though I knew my legal rights, and was prepared to fight them as hard as I could, that would not help me in the short while, if I were to lose my income. Knowing that I could count on a handful of workers to watch out for me, and help me as needed, I needed to convince my doctor, to go against his own recommendations, and release me back to work, knowing full well, I risked either reinjuring my rib cage, or worse, impacting my heart and recent bypass. I still needed to complete my cardiac rehab, but without my job, that rehab would never happen as I would have lost my health benefits.

In the end, nobody won by my early return to work. A bitter management failed to dump the perceived dead weight and an adversarial advocate for his co-workers, and as for me, my health continued to decline, perhaps even quicker. Had I to do the whole recovery over again, I am not sure I would have wanted my doctor to let me go back to work sooner than I was ready.

Which brings me to a story many of us have been following since it occurred more than ten days ago, Buffalo Bills’ Damar Hamlin. Collapsing on the field of a regular season football game with playoff implications, going into cardiac arrest, which normally would lead to death, on national Monday Night Football, on January 2nd, Hamlin, was transferred from an Ohio hospital to a Buffalo hospital a little over a week later, and after completing some more tests, was sent home for the rest of his recovery.

Anyone watching the final season game of the Bills last weekend, saw the opening kickoff returned for a touchdown by the Bills, clearly building from the emotional lift given by communications directly from Hamlin himself to his fellow players. Any fan who has seen a serious football injury, and to be given inspiration by that player, or just as in the movie “Rudy,” inspiration is definitely a powerful thing. The Bills won that game, and now the playoffs begin.

Of course, all of the chatter has been, will Hamlin be able to return to football? Should he return to football? What about the playoffs? If there is anything you read in my situation, you can make no mistake, if Hamlin had his way, he would be suiting up for the Bills playoff game against the rival Miami Dolphins. But also, just as in my situation, there is likely a lot going on through his head, though I am sure he wants to return, even with the cliche “lightning does not strike twice,” will not ease that shadow hanging over Hamlin if he decides to return. As a football fan, I have seen plenty of players reinjure themselves or have their play impacted worrying about a reinjury.

Make no mistake, what happened on that football field January 2nd to today, is nothing short of miraculous. I know I was not allowed to watch hockey games in the hospital because of what it did to my heart rate, so I was really surprised, though not really, he was allowed to watch the game this past weekend. But I am sure he will be watching this Sunday, even more so, wishing he was able to play. I think no one would begrudge the Bills getting more emotional inspiration from Hamlin during the playoffs.

Most football injuries are serious, but this is the first time, the NFL almost had a fatality during an actual game. If Hamlin wants to come back, it should definitely be on his own terms, and definitely when he is ready.

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

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