Paul's Heart

Life As A Dad, And A Survivor

If It Ain’t Broke…


The expression goes, “if it ain’t broke, don’t fix it.” A couple of days ago, I received my 5th dose of Pfizer vaccine, this particular booster, the bivalent booster, now in place of the prior vaccine, considered the monovalent booster, no longer authorized as a booster dose. Here is the difference between the two vaccines. The older vaccine covered up to the Delta variant, not the Omicron, which the newer vaccine protects against and hopefully most of its variants.

Under the guidance, direction, and supervision of my doctors, and the Leukemia & Lymphoma Society, I followed the simple protocol of timed doses, as well as the appropriate bloodwork, prior to each dose, and after each dose, well, at least up until now.

It has been well established that my body does not maintain the vaccine protection, similar to other vaccines I struggle with keeping coverage. Of course, my first question to the pharmacist, “so when will I need to get another booster, especially since I know I will likely only have four months or so until I have no coverage anymore against Covid?” Her answer was that they were still trying to determine that. So, what can I do, if medicine cannot help me?

Simple, keep doing what I have been doing. Because as of this post, I have still not been infected with Covid. And no, I have not been hiding, “living in fear” as many like to call it. While some may have looked at any suggestions of precautions as political or conspiratorial (the loss of freedom and tyranny), I chose to look at it, “what can it hurt?” Even if opinions and suggestions changed with something we had never dealt with, which is how science works, like washing hands, something we should have been doing in the first place. Have you noticed how we no longer have a shortage of hand soap and sanitizer? Why is that? Perhaps it is not being done as efficiently or as often, just as before the pandemic. Of course there was staying home if you were sick, or avoiding people who were sick. And the mask… ooooooh that damn mask! At least in my case, and in the case of three others I know, none of whom have had Covid, the mask has provided that protection.

In his most recent comedy special, comedian Gabriel Iglesias (known to his fans as “Big Fluffy”), spoke of his experience with Covid, having four of the five extra risk factors. When he spoke of the masks, he mentioned that most of the complaints that he had heard, pertained to the “smell,” which launched Iglesias into a funny and truth-hurts bit. “Of course the mask smells. We have been trying to tell you that for years! You are just now breathing what we have been breathing in (referring to bad breath).” He then went on to joke that his masks smell like burritos and churizzos.

I am now one of the minority, probably way less than 1% who still wear a mask, 100% of the time indoors, and outdoors if the area is too densely populated. And now, we head into the colder months, everyone goes indoors, and northerners travel south, bringing their germs and sicknesses with them. So yes, just as 2020 and 2021, you have to expect another Covid surge.

Nothing pissed me off more, than being told I was “living in fear,” just because I followed recommendations to do my best to prevent infection. On top of my vulnerabilities and risks that I have in the first place, I had to have two major surgeries in 2021, one for a carotid artery (important to prevent a stroke), and the other, my 3rd heart surgery, as my breathing had become impacted that I could not go more than ten feet without struggling for air. A Covid diagnosis would have delayed either surgery, regardless of the complications to my cardiac system from Covid itself. In 2022, I wanted to see my daughter graduate, again, a Covid diagnosis would have prevented me from attending an event that meant as much to me as it did to her.

No, I was not living in fear. I was doing all that I could to prevent a tragic event, or an absence to one of the biggest days in the lives of my daughter and I. And here is my point, as I said, with an attitude of “what can it hurt?,” clearly, nothing. The steps I took, while doing things I wanted to do, just with precautions, got me to where I am today. My method, at least in my situation, worked.

Two days ago, I participated in a Zoom session with a panel created by the Leukemia & Lymphoma Society. The panel had two doctors from Memorial Sloan Kettering, a doctor from the NIH, and of course the doctor heading up the study for the LLS, on Covid and how it affects those of us who have had blood cancers, which actually was considered by the CDC for its valuable information collected. While this meeting did pertain to those who have dealt with leukemias and lymphomas, some of the information that was given, is actually good information for all to pay attention to. I value the doctors that participated in this panel, as well as those that I personally interact with, and all are on the same page. This information is not coming from and television media or social media. The information is coming directly from the medical experts themselves.

Is it okay to go back to normal? Just as cancer survivors ask this same question, there is no normal, only a new normal. Can you go without wearing masks, hang out indoors in packed theaters and restaurants, etc.? Their unified answer was, sort of. The reminder came that the virus is still around, with newer variants (as many as 300 of them). It is up to each individual, and their own risks. But they also said, the colder months are when people have a higher tendency to get sick, and spend more time indoors. Add to that fact, this season, is probably the first time in two years, with a decline in flue and other illnesses, along with Covid, and most no longer wearing masks, there undoubtedly will be a three year spike. So, let your guard down? No. Live life, yes, but be smart and careful.

Can you get cancer from Covid or the vaccine? This question possibly came from all of the conspiracies floating around. Once again, the panel was in agreement, that it is highly unlikely, stopping just short of 100% certain, you cannot get cancer from Covid or the vaccine. The reasoning? If you have cancer diagnosed following either infection or vaccination for Covid, you had the cancer before either. Cancer will not just pop up like that. That said, there was the possibility that a weekend immune system from the infection, could allow a cancer to progress or develop more quickly.

Evushield is not a substitute for the vaccine. The doctors on the panel really appeared disheartened that they had to admit having patients who were still not vaccinated, that after two and a half years, people still were avoiding an initial dose, or boosters. Again, unified, the risk of dying from a severe infection of Covid for anyone having co-morbidities and not being vaccinated, has not changed to the benefits and the risks of rare side effects from the vaccination. Now that said, I have friends and fellow survivors who “cannot” get the vaccine, which is different than those who “will not” as was the case of my younger sister who died from Covid last year.

Paxlovid is a great treatment for early diagnosis of Covid. End of story.

Who is likely to have to deal with long haul syndrome? According to the panel, 50% of those dealing with long haul are unvaccinated. Symptoms of long haul likely to appear after four weeks and can include “brain fog”, cardiac, and pulmonary issues. If vaccinated, and having a shorter bout of Covid, you are less likely to have to deal with long haul syndrome.

Should spouses/significant others, family members, friends of someone who has higher risks with Covid, act as if they themselves were high risk also? Short answer, yes. And that was agreed by the entire panel. And here is why, politics, conspiracies, and false information thrown out the window. This falls on a simple premise, if you truly care about your loved one or friend, you do not want to be the one who brings and infects your loved one or friend. This is also known as care and consideration, nothing else, no other motivation or statement. Any sacrifice is not for you, it is for your friend or loved one. Need proof? Someone brought Covid into my sister’s house, as everyone in the house ended up with Covid (and yes, no one was vaccinated). And the shitty thing about that, our mother was put in the middle, of being there for her dying daughter with Covid, or exposing me to Covid just prior to my heart surgery. I truly believe a simple mask, combined with the vaccine would have prevented this tragedy for my mother.

Rapid test or PCR? The entire panel agreed, while the rapid test has its value, the more accurate will always be the PCR test for its accuracy, especially important in determining if still infected before exposing anyone else.

What good are antibody tests now? As of this posting, not very. Because the antibody testing covers up to the Delta variant, not the Omicron.

Why doesn’t the vaccine prevent infection? The vaccine was NEVER meant to prevent infection or spread. That is what most either do not understand or forget. If you do not get infected after being vaccinated, that is a benefit. The vaccine’s known purpose was to lessen the severity of the infection, that could often lead to death. I know more than a dozen people who died from Covid, all unvaccinated. Everyone else I know who has had Covid and vaccinated, are still here (side note – my sister’s husband and sons, unvaccinated, did survive their infections, but one is struggling with extreme long haul).

But why do we have to keep getting boosted and for how long? The one doctor from Sloan Kettering stated the misconception, that the vaccine is not working or not good enough. “It is not the vaccine, it is the virus constantly changing, like the flu.” There is a reason those of us who got one polio vaccine, only have one in our history. Because the polio virus never mutated. Unlike the flu, and now, Covid. The vaccines work, it is the viruses and their constant mutations, that will likely require a regularly scheduled shot for Covid, just as we do for the flu. With the newer bivalent, a timetable for boosters has not been set yet, but possible six month or annual boosters. A vaccine to prevent something is only going to happen before a virus gets to an epidemic or pandemic level. Something our country had no desire to prevent back in the beginning.

Again, this information did not come from television or social media. Drs. Mini Kamboj and Ariela Noy, both from Memorial Sloan Kettering, Dr. Adrian Weistman of the NIH, and Dr. Larry Saltzman of the LLS, are all highly reputable resources.

For those that cannot receive vaccines, again, that is different from those that flat our refuse, there are likely alternatives out there, if you are fortunate to find a reliable resource, and I am sure they are out there. I am not personally able to commit to this as an alternate option, but my mind is open to anything that would be deemed complimentary which means, at least getting the advice of your personal physician.

I hope this information is helpful. It has worked for me so far.

“I Love My Dad”


Okay, my usual disclaimers… this post has nothing to do with my own divorce or my life as a child of a divorce myself, though there are similarities. The issues in this post, while reflective of the role of the father, can also apply to the mother.

In this movie “I Love My Dad”, “Franklin”, the son, played by James Morosini, who also happens to be the writer and director and whose life the movie’s premise is based on, has severed his relationship from his father, played by actor and dark comedian Patton Oswalt. Admittedly, I am a fan of Oswalt’s which is what drew me to watching the movie.

I must admit, watching a movie like this does have the potential to trigger memories that I have not dealt with or resolved. So it can be a bad thing or a good thing to watch them. I have the unique position of viewing movies like this from a child’s perspective, being alienated from his parent, and from a parent doing all he can to keep and maintain the relationship with his daughters.

What the movie does not address is why, what was behind split of the parents, and what role was played by the mother in the dissolvement of the relationship between the father and his son. Do not misunderstand me, it is clear the later issues that built up the resentment by the son, but not the catalyst, which is relevant as it is more than likely, Patton’s character was not the only problem. So that I do not spoil the movie, there is an issue that the son faced, that was not addressed in detail either, and again, I think relevant to the movie, as could it possibly have been the reason, the father sought to make amends with his son?

An all too common situation, with any number of causes, a parent’s relationship with their child gets fractured as a result from the divorce. There is audio played during the beginning, of the father constantly disappointing his son, with the failure to attend events in his son’s life. Again, as an ACOD, I get how that feels. At some point in “Franklin’s” life, likely after the undetailed event, he cuts his father off from communications via social media, also known as “blocking” him. We did not have this option back in the 1970’s and 1980’s, but it is possible, I would have done that to my father as well if I had the chance.

At the advice of a friend, the father is encouraged to create a fake profile on social media, which might allow him to follow what his son is up to, commonly referred to as “catfishing,” pretending to be someone you are not, leading someone else on. This is where things really get messed up, because emotions get involved, and the son is already challenged emotionally. And there is the expression, “the truth always comes out.” And when that happens, results can be even more devastating. The father creates a profile based on a female waitress at a restaurant he eats at. Not realizing the potential for how far this effort could careen out of control, it does just that, when the son insists on meeting her, the real woman unaware that this is even happening. “Franklin’s” mother does not know of the catfishing, but thinks that her son is actually pursuing someone real, regardless, given what he has gone through, and still does not think it is a good idea, providing the opportunity for the father to step in, and the attempt to repair the relationship can begin.

The end of the movie is predictable, but also a bit disconnected. There, I have not spoiled anything about the movie.

As I said, as an ACOD, I know there has to be more to the story that led to the estrangement between the father and his son. But I also know, as a father myself, having gone through a divorce with children involved, I was NEVER going to allow the things that happened when I was a child, stand in the way of a relationship between me and my daughters. NEVER! Albeit, I had a couple of things in my favor that my father did not have, technology for one. I truly believe, that having the tool of video chat via apps such as Facetime, made all the difference in the world. Whereas with a phone call, there was no way to see if attention was being paid when we talked. More importantly, there was an obvious impact, being able to see each other every day.

Now, as for the issue of “not being there” was presented constantly in the movie, again, as an ACOD, I get it. And I know the finality of “having enough.” But unlike Patton’s character, as a father, I have done all I can to make sure that I have been there for events in my daughters lives. As older teens, they were able to see for themselves, and judge for themselves, and understand if there was a reason I was not able to make something. This became a frequent challenge during Covid times, between restricted flying, and of course, prevention, as I had multiple life saving surgeries that needed to be done, and would be delayed with an exposure to Covid. But even pre-Covid, there were “speed bumps” in my way that at times prevented me from seeing my daughters. I never let my daughters believe that they were unloved, forgotten, or not important to me. Today, I help them prepare for college life and beyond. Giving up on my daughters, getting into a situation as my father did, and as Patton did, was never an option.

So unlike Patton’s father character, I did not have to resort to means to try to get back into my daughters lives. I am a fan of Patton, but I do wish that perhaps a different approach would have been taken. Easier said than done, as I have no idea how else that could have been done. The easiest option is never get into that situation in the first place, but depending on the level of antagonism from the other parent, it might not be unavoidable.

The movie, “I Love My Dad” is no “Kramer vs. Kramer” or “Mrs. Doubtfire” as far as the portrayal of the complexities of the alienation between parent and child. But this dark and very twisted comedy, at least puts a current spin on the attempts to resolve the relationship, and sometimes in a very cringe-worthy way.

Happy TAVR-sary?


If you have followed “Paul’s Heart” for at least a year, you know that I mark various health anniversaries and milestones, beyond my cancer survivorship of 32 years from Hodgkin’s Lymphoma. Today marks a new anniversary, an amazing procedure, replacement of my aortic valve.

This is a picture of the replica of my actual valve replacement, actual size, in the palm of my hand. Now for the cool part of this post. If you are wondering how they put this large device inside my heart, as I did once I received this replica, here is a short, and very cool video, showing how the procedure is done.

@ghostmedical

Aortic Stenosis is a type of heart disease where the valve becomes narrowed and doesn’t open properly. #medicalanimation #awareness #heartdisease #interestingfacts

♬ Somebody That I Used To Know (feat. Kimbra) – Gotye – fiona

Pretty cool, right? What is even more cool, is that just a few years ago, I would never have been eligible for this surgery, because of the late effects I live with from my cancer treatments. You see, the radiation damage that caused so much extensive damage to my heart, this is my 3rd heart surgery, is also, what made this type of surgery, nearly impossible years ago, from “scarring” caused by radiation damage. But because of progress and technology, I was able to avoid having my chest opened again, and have the procedure go through my leg, into my heart as the above video demonstrates. The obvious advantage, much faster recovery time, I was doing stairs in two days as opposed to building up a tolerance to walk even at eight weeks.

I knew this day was coming. However, when I arrived back home from a visit with my daughters, there was an envelop in my mail, which I recognized the sender as the manufacturer of my valve.

I was initially jarred by the surprise mail. Other than receiving the package with my valve replica, I have only received emails with surveys and topics related to good heart health. Over the years, I have also learned to recognize signs, such as when you are the first patient to arrive, yet the last to leave, you know a doctor wants to see you, and that will likely not be a good thing. In this case, if it was going to be bad news, I know it was not going to be about my heart, as testing recently showed my valve was working as it was supposed to. If it was going to be bad news, it would have to be some sort of recall, which would mean yet another surgery.

But there was also one other possibility. Have you ever gotten a “birthday card” from either a dentist, auto insurer, which of course came with a reminder of a soon due premium or appointment? I allowed my mind to take a slight detour from the usual “oh here we go again” path, and recognizing the upcoming date, could it be possible…?

The manufacturer of the valve, sent me an “anniversary” card. They referred to it as a TAVR-sary, TAVR standing for Transcatheter Aortic Valve Replacement. Transcatheter, meaning, it would either go through the arm or the leg, to the heart, no open heart surgery.

It is hard to believe that it has been one year already, fourteen years from my first heart surgery, open heart for an emergency double bypass, and three years from my second heart surgery. It is also hard to believe, that this needed to be done during one of the most difficult times for hospitals, in the middle of a pandemic.

But unlike my open heart surgery, I was walking long distances the next day, and no discomfort from the surgery.

One question that I always get when it comes to all of the procedures I have faced since my days with Hodgkin’s Lymphoma. “If they knew all of these things were wrong, especially back then, why didn’t they fix them all while they were in there?” This is a perfectly reasonable question, and one that I could not grasp the answer until this procedure. The position had always been:

  • “we need to wait until the risk of a heart attack outweighs the risk of the surgery”
  • “we need to wait until the risk of a stroke outweighs the risk of a stroke during surgery”

You get the idea. My body is treated like it is a ticking time bomb. But here is the reason why, I have to live my life on the edge, waiting for another shoe to drop in an event, much like the Sword of Damocles.” All of the repairs that have been done thus far, are not permanent. My bypass, the stent with my heart, the stent with my carotid, and now the valve, all have potential expiration dates. And if those times come, I will have a very difficult decision to make, because going through them again, will be even more risky than the first time. On top of that, I still have two other issues with my heart, considered stable at this point that could require attention in the future.

I have never been able to get a firm answer on how long my bypass should last, but I have been able to estimate approximately fifteen years on average. The good news so far, as I approach my fifteenth anniversary in April, the stats are still encouraging that I have a few more years to not worry. Stents are usually patent ten to fifteen years. The type of heart valve I received, should last between seven to ten years (a mechanical valve, is thought to last a lifetime, but there are several factors that led me not to consider that option, mainly having to be done by open heart, and a lifetime of maintenance of heavy blood thinners and other potential complications).

While doctors were aware that I had these other heart problems when my bypass was done, at the age of 42, had those things been corrected back then, while they had me opened, it is very likely, at least the stent and the valve would have needed to be replaced again by now. So I get it why they made that decision years ago.

So until that time comes, that either additional procedures need to be done, or re-done, the company that made my artificial valve, had a message inside of my anniversary card, how to take care of my heart, suggestions that actually can apply to anyone, regardless if you have had heart surgery or not.

It is not easy being a long term cancer survivor. But I have had, and continue to have, a great life.

I have had fourteen more years with my daughters than I quite possibly might not have had. I have gotten to watch both grow into adults, and will get to see who they become and the lives they will have. And that in the end, is all that matters to me.

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