Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

02 Dec 2021

“That’s The Fact, Jack!”


In one of the funniest Ivan Reitman movies, “Stripes,” a commander in the army, addressing recruits who had just finished basic training, spoke directly to a band of misfit recruits who, shall we say, struggled with the concept of basic training, and in spite of that, completed the training, “am I to understand that you completed your training on your own?” To which Bill Murray’s character barks back “that’s the fact, Jack!”

Over the last two years, we have been inundated with facts for any number of current affairs. One that personally affects me is the Covid19 pandemic. I have made it clear, that I do not rely on social media or main stream media for my decisions when it came to this crisis. Information that I relay, comes directly from the medical personnel that I deal with. Although I did have someone actually tell me I needed to find all new doctors because of the warnings I got from my doctors. These doctors had to be wrong or in with the “hoax.”

But it turns out, my doctors were correct. Their advice was accurate. The decisions that we, my doctors and I made as a team, were right.

The warning was stern for the new highly contagious and lethal virus spreading across the world, “if you get it, with the condition of your heart, it will kill you.” That was the caution urged by my cardiologist as well as all of my doctors who were in agreement. I did not need the news or Facebook to confirm anything. I had the best and most reliable resources. With no vaccine, no treatment, hell, not even any testing at the beginning, if I came down with Covid19, I was going to die.

Two things in my favor in getting through this, at least until testing and vaccines came along, I knew from prior working experience, how to deal with biological hazards. The other, the experience of having gone through so many other contagions, on two occasions, travelling right into “hot” areas (SARS and bird flu when adopting my daughters). Like all the other viruses, I knew that I had the intelligence and common sense to deal with, accept, and prevent me getting sick to the best of my abilities. The important thing was for me to get to the most important part, vaccines.

I lost my spleen back in 1989 while being diagnosed for Hodgkin’s Lymphoma. Long story short, over time I discovered that contrary to being told, being asplenic was no big deal, turned out it was. In the case of many vaccines, my body will not make antibodies as easily as it should, if at all. This had been confirmed previously with two other vaccines in my past.

While the development of the Covid19 vaccine was quite an amazing process, and while seemingly rapid, it was already previously being developed over prior years, there would still be red tape slowing the process down that needed to be overcome. Part of that process, is protocol, how many, how much, when, etc.

Once the vaccine was approved for emergency use authorization, it became a matter of who would be vaccinated first. Of course, the most vulnerable, the elderly and medical workers were first. Then came my category, the immune compromised and immune suppressed. My immune system is compromised by not having a spleen. So, “go get the shot.” Not so fast.

Remember, I know that my body reacts, or rather does not react as others who are otherwise healthy. The “protocol” for the vaccine, was one shot, followed by another several weeks later. That was it. What would happen if I got the two doses, and did not get the reaction needed? There was no protocol for additional doses. There was no protocol for a “do over.”

Having been involved in medical research and the medical community for as long as I have been, I know to expect more to come. And I had heard chatter that a 3rd dose was being researched. This was the news I was hoping to hear. But at that point, it was only chatter. I made the conscious decision, to continue my prevention behaviors while I wait for approval of that third dose. Again, long story short, that approval would come, but as a booster, administered six to eight months later. This was not exactly what I needed to hear to make my decision. I needed to hear “third scheduled dose,” in other words, weeks after the second dose. Eventually, that would happen.

Now as the title of my post states, “that’s the fact Jack!”, I admittedly took a big risk with not getting the vaccine as soon as I was approved based on my conditions being immune compromised. But knowing my medical history, it was a worthwhile and potentially life-saving guess.

The Leukemia Lymphoma Society had been studying the effects of Covid19 and the vaccines on blood cancer patients, of which Hodgkin’s Lymphoma is a blood cancer. Taking on the task, and relaying the results to the government (the CDC, the FDA, etc.), results were collected of the successes of the vaccines for those of us challenged by various circumstances.

The scientists at the LLS would have patients register, and submit to blood work, weeks after each dose to measure for antibodies from the vaccine, as well as to see if there was previous exposure. An additional blood test would follow at the six month mark, obviously to see if the coverage was still holding. And just like the vaccines were provided by the government, this blood test was covered by the LLS.

Now it was my turn to get the vaccine, and here are the facts.

Three weeks after receiving the first dose, I had zero antibodies from the vaccine. The good news it was also confirmed that I had not Covid19 antibodies either. In other words, I had never been exposed to it. So, it was bad news, good news. If my guess was right, and from what I saw with other immune compromised survivors, I should expect at least a little bump of a reaction.

And three weeks after that second dose, I did indeed get a small bump in the discovery of some antibodies. More good news, continued lack of exposure to Covid19 (pretty good considering where I live, in a pro-Covid state). The third dose was going to be a huge game changer for me. If I got the reaction that others had gotten, my antibodies would be 10 times higher than after the second dose. If not, it would not be catastrophic by any means, but not good news for sure, as I would have to rely on future vaccine developments.

The third dose was given a month after the second dose. The blood test was done three weeks later. It was confirmed, I had the anticipated reaction and the needed level of antibodies. As a bonus, still no exposure to Covid19.

So now I wait. As the healthy of you are told to get a booster due to waning coverage, you will get a third dose. If my coverage wanes, I have already had my third dose. I am hopeful though, as I am aware of studies of a fourth dose, and that would apply to me.

This is how science is supposed to work. Research, discover, apply, and believe in. It is heartbreaking the number of people not just believing the false information that is out there, or the conspiracy theories, but aggravating of the number of monsters out there promoting the erroneous information, and nothing is being done to stop it.

I know the current vaccines do not prevent infection. I know the current vaccines do not prevent spreading. And for that, we have to rely on all the things we were recommended to do from the beginning. It is frustrating, because had we all been on the same page back in the beginning, I do not believe we would have had over 800,000 dead Americans. The war cries of patriotism and tyranny all in effort to protect the health of our citizens was a false argument.

I have never lost any freedom by wearing a mask. I still support local businesses. And the only thing preventing me from going to a movie theater or concert ever again, has nothing to do with regulations, but rather the fact that we have so many pigs in our country that need to be told to wash their hands and cover their mouths/noses when they cough/sneeze.

Science says, we will continue to have variants because we did not shut Covid19 down when we had the chance, while there was still hope. And now, while we have vaccinated and unvaccinated, it is the unvaccinated we will continue to see roll the dice, with repeated infections, longer lasting effects, and more deaths.

I lost my younger sibling to Covid19 back in September. She made a foolish choice, and it cost her, her life. And if you had the chance to ask her before she came down with Covid19, I am sure she would have said, it was worth the risk as opposed to a side effect from the vaccine that could be dealt with. She got her answer.

As someone who never thought he would get cancer, never thought he would need heart surgery (let alone three of them), and countless other surgeries, do you really believe that something can’t happen to you, just because some nut job on a right wing network or social media says so?

Like I said, I have had to deal with my health, and viruses a long time. I know how to protect myself, through science. At this point, it will probably be another three years before we have Corona virus where it is manageable to where deaths will be the same as the flu, as opposed to the argument that Covid19 is no worse than the flu. Yes, yes Covid19 is worse than the flu, 16 times worse at least in deaths. And that is the fact, Jack.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
20 Nov 2021

Poster Child For The American Heart Association


The caption for this photo may be a little hard to read, or even recognize. But this photo is a forty year old photo of me, in my senior year of high school. You just have to take my word for it, unless you can actually read the blurry print accompanying the photo, but it is me. The significance of this photo as it turns out, is pretty strong, especially if you believe in fate.

How many times have you been somewhere, and donations are being collected for a specific cause such as a homeless shelter, perhaps someone who lost a home in a fire, funeral expenses, anything really? Some may think that spare change or a few dollars will not make a difference and not put anything in, or perhaps they will. The truth is, you never know the impact it has on the benefactor. Unless someday, you end up in that situation yourself.

So, here is where the photo came from, my senior yearbook from high school. Forty years yesterday in fact, was to be a “jump rope-a-thon” to raise money for the American Heart Association. It was to take place that morning, from 9am to noon (basically two periods and my lunch time). Teams of up to six were to participate. Usually this event has a pretty good turnout.

And then, one parent became a killjoy, contacted the school district administration to complain about missing classes, and a district administrator then, put pressure on the coordinator at the high school to change the date and time from Friday to Saturday. Well, you guessed it. The fundraiser was cancelled due to lack of interest to be done on a Saturday morning.

I had been raised with the mentality to make a difference wherever I could. And though I was unaware of anyone in my family who had ever had to deal with heart disease in any form, I felt this was too important not to happen. So I approached the gym teacher and said that I would still like to do the “jump rope-a-thon,” solo (as my team was not available with the proposal I was about to make).

As it was my senior year, I had two study halls at the end of my day. Add an extra hour after school, I offered to jump rope, for the entire three hours as the event would have been conducted, that same day, only in the afternoon. Other than jumping rope in gym class, I have never trained or endured any extended time jumping rope. But I was a kid of 17 years of age. How hard could it be?

With a five minute break every half hour to either drink water, or use the bathroom, I completed the three hour challenge/fundraiser, raising $170. But that was $170 more than what the AHA was going to get thanks to the efforts of a whiny parent. Yes, I said that. Considering today that kids miss classes for all kinds of activities, even “tolerated” “skip” days. Yes, as a parent, I know about those as I have older teenagers.

Anyway, getting back to my effort, I did not give it any further thought. I felt good about what I did, and that it would at least benefit someone. As I got older, I would have relatives who would be diagnosed with heart disease. My grandmother would require a pacemaker. My father would suffer a major heart attack. I never forgot about that day that I jumped rope for three hours, grateful that hopefully my efforts helped research in treating cardiac patients.

Now for the kicker. I never expected to be one myself.

As a result from being treated with an extreme dose of radiation (4000 grays, you can look it up, that is bad) for Hodgkin’s Lymphoma, combined with the toxicity of chemotherapy, damage to my heart developed over the next eighteen years.

This is a diagram my new doctor, a cardiologist, was using to explain what was happening to me. Cumulative damage from radiation therapy, over time, had caused enough scarring to block the left main artery to my heart. Though his note said 80-90% blocked, it was confirmed 90% once inside. This resulted in an emergency double bypass to save my life before having a heart attack referred to as a “widow maker.” I do not need to explain to you how serious that is, because the name speaks for itself. You die from this.

It would be nice, if that is where the story ended. The doctors left the one marked “RCA” alone, as it was “only” 30-40%, and expected my body to fix itself, with proper diet and exercise. Not shown here, is the report that also showed I had an issue with two, eventually three valves inside the heart. Again, they too would be assumed to recover on their own with a lifestyle change.

Unfortunately, there is no lifestyle change that can be made to reverse these late developing issues from radiation and chemotherapy treatments. Eleven years later, I would have my second heart surgery, which even looking at that word “second”, I could never have imagined having one, let alone another. Remember that “RCA”? Well, in 2019 it reached the 90% threshold. Fortunately, this was correctable with a stent.

You see, one thing about us Hodgkin’s survivors who have been exposed to the extreme treatments that we were, we carry extreme risks later in life, with corrective surgeries, especially open heart surgeries. One open heart surgery is risky enough, let alone a second one, with risks being bleeding to death, to difficulties healing.

A warning came along with this stent. One of those valves, discovered back in 2008, was nearing severe need to be replaced, likely to occur within years of having the stent replaced. And a couple years later, that valve needed to be replaced, my third heart surgery.

There are no guarantees how long each procedure will last, and as of right now, patients in my situation are not usually candidates for heart transplant because of all the risks. It is quite jarring to see the words “heart failure” written on your medical record, and only recently, were the words “radiation induced”, a crucial distinction and finally a recognition of a condition as a result of extreme levels of radiation exposures and toxic chemotherapies.

I would like to think that is the end of the story with my heart surgeries. I know that it will not. Part of the close surveillance that I am under, because it is important to follow up all of the repairs, that the bypass is still working, the stent is still open, and the valve operating as planned, these things are not permanent. Meaning? I am likely to undergo more heart procedures in the future. I do not know when, just that it will happen. The good news is my bypass is still doing great (I was told 10-15 years) as I am near my limit on that, with the bypass still holding at 40%! Stents and valves are not permanent, expectancy is usually ten years or less, I have a ways to go on both of those.

For now however, I am riding my new “feeling” of health for as long as I can.

Posted in Cancer, Education, Family and Friends, Side Effects, The Heart | Leave a comment
10 Oct 2021

Hodgkin’s Survivors Vs Covid19


I want to be clear, this post is an anecdotal piece, in other words, it is based on personal stories of others, related or told to me. There is absolutely nothing scientific about this post, or is there?

From the first day that we were warned about Covid19, and the risks, especially to those with compromised immune systems, several things were being thrown around. First, we could not get the truth not just how serious the virus could be, that it even existed at all. Then there was the flipflopping of how to protect ourselves from what could not be agreed upon if it existed or not, was going to be serious or not. And then there was the fact, nothing could be done to prevent the virus, or treat for the virus.

For the immuno-compromised/suppressed population, most of us did not listen to the political banter, back and forth, who was trying to blame who, who was lying to who. Those of us in this situation have a much higher power to trust in our care, our doctors, you know, the ones committed to treating us for whatever ailment we face. We know that whatever advice our personal doctors would give us, is given from a trusted source, someone clearly looking out for our health. No politics.

Wear a mask. Socially distance ourselves. And hard to believe that we have to be told this one, wash your hands. This was the best advice that could be offered in the beginning, so that there could be a chance or putting a stranglehold on the worst pandemic in more than a century.

To follow these recommendations, those who chose to make this deadly virus political, spouted off, and continue to do so, anyone following these mitigation efforts “live life in fear”. And I suppose there is at least some truth to that statement. Given the mortality of Covid19 (733,000+ dead in the United States alone), and the increased susceptibility of infection, hospitalization, and risk of death, damn straight I am afraid of Covid19. Remember how I said that I listen to my doctors. To have my cardiologist tell me, “there is no doubt, if you get Covid19, with the health issues you deal with, especially with your heart, Covid19 will kill you,” yes, I do fear Covid19. But I definitely do not live in fear of it.

I live smart because of it. And there is a difference. With the exception of going to a movie, concert, or other large populated event, I am doing everything I was doing before Covid19. And though I know dozens of people who have been infected with Covid19, and more than a dozen who have died, including my younger sibling as recent as a month ago, by following the recommendations, I have gone grocery shopping, eaten food from certain restaurants (who also followed precautions), walked in parks, even facilitated visits with my children from state to state. This entire time, in spite of the risky behaviors of others in my area, I have remained uninfected. If I were living in the “fear” that others imply, I would not be living my life as I have from day one. Simply, I have lived smart.

Even with the promise of a safe and effective vaccine, some of us have issues that need further studies to make sure what amount of vaccine will work. And those studies are going on, and have been going on for some time. Results are coming in, the most major one, determining the need for a third dose. There are those, like me, that will not make antibodies without additional doses. And this in fact has been proven for me, as bloodwork shows, after my first dose, as anticipated, I had zero reaction to the vaccine, no antibodies from the vaccine, nor any exposure to Covid19 itself. So it will come down to at least a third dose, as long as the second one causes at least a small response. Otherwise, I have no idea what I will do, other than to keep doing things the way that I have. There is already a study on a potential 4th dose, and I am likely to fall into that category.

Living smart. Not, living in fear. I am getting my information from those I trust the most, my doctors. Not the media. Not even family or friends. Definitely not anyone I cannot confirm, especially through a grapevine.

So, how did my biggest fear, of a mass wipeout of other Hodgkin’s survivors like me from Covid19, turn out with minimal loss? Everyday, I would watch my feeds, to see who might have been infected, especially the many that I knew in New York, the original epicenter of the pandemic. The thing we all count on as fellow survivors, is that there will always be a fellow survivor, pushing someone to seek help, and not just if it is related to a late effect. A simple fever can prompt a sharp warning to go the emergency room as is common protocol.

But during the pandemic, we wasted no time, urging and convincing others to get help, right away. Those that did get infected, did not necessarily have mild experiences either, but their prompt decisions to get help, because they were urged by those who had their best interests at heart, was clearly a deciding factor in their survival.

Our survivors are not united 100% to be transparent either. There are a small number of those, who have made their choices based on politics and conspiracies, and even were fortunate to have “not so bad” experiences with a Covid19 infection to bolster their arguments. Though they will not acknowledge it, they were lucky. But the majority took this seriously, sought help when needed, and got through. I am unaware of anyone from my survivor circle passing away from Covid19, just our usual issues.

With the vaccines, again, the majority jumped at the opportunity to get vaccinated. And there are those who are hesitant for any number of reasons, some justified, some not.

Having been exposed to high doses of radiation to the chest, treated with toxic chemotherapy having a direct impact on the heart and lungs, and having no spleen leaving me susceptible to not just Covid19 but many other infectious diseases, I have no doubt, that it is the decision to live smart that has made the difference. And that does not equal living in fear.

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

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