Paul's Heart

Life As A Dad, And A Survivor

You Mean There Is More?

I have survived cancer, Hodgkin’s Lymphoma, over thirty-one years. I guess that would qualify me to refer to myself as a “long term cancer survivor.” But if you talk to me about my survivorship, while I acknowledge my longevity, when I use the term “long term cancer survivor,” like many others, the term has a much different meaning because as it turns out, our battle never really ended.

I was done with my treatments on March 3, 1990. This is the date that I officially recognize as being “done” with cancer. I was actually declared in remission several months early, barely half way through my treatment regimen. As far as the date any of us survivors use, it is one’s preference.

In April of 2008, eighteen years later, I discovered that my battle was not over yet. Though I had seen others battling what is described as “late term developing side effects” from their treatments, up until that point, I had none, at least I was unaware of any. And why would I be? I was long not being followed up by my oncologist for anything. But on April 17th, 2008, a near fatal heart condition was not only discovered, but the cause revealed so much more.

When you get a sunburn, that is from radiation. Soon after you notice it, it may start to blister, and eventually peel. And that is just what you see. The sun’s rays do not penetrate deeply into the body to the best of my knowledge, so we only get to see what happens on the outside.

Radiation used to treat cancer however, that does penetrate into the body. It has to in order to destroy the cancer cells.

You can see from the photo above, a burn from radiation treatment, and this is likely very early on, the only way to tell that this is not “sunburn” is because of the skin pattern. Pictures of radiation burns from treatments only get more extreme and difficult for most to view. My point is, just like the sun’s burns, radiation burns are visible on the skin. But unlike the sun, radiation treatments reach below the skin. And of course, below the skin, we cannot see what is “cooking.”

Sunburn usually resolves itself in a short period of time, likely a week (unless you are a skin cancer risk). But treatment radiation is a different situation. Because of the dosage of radiation used, a term called, “half-life” comes into play. Simply put, “half-life” is how long the radiation will last in the body once exposed. Because of the massive amount of radiation used to treat cancer, unlike that from the sun, which skin has a chance to recover quickly, if you are a cancer patient treated with radiation, no matter how many years out it has been, you likely are still dealing with the impact of your radiation treatment. That is why many of us refer to radiation as the “gift that keeps on giving.” Radiation gave us the gift of the cure for our cancer, but is also giving us so much more.

The problem, in my case, and like many before me, those of us treated before the turn of the century, medicine was either not aware of, or did not learn about the late effects from the progressive and cumulative nature of radiation damage.

For me, once my “widow maker” blockage was discovered with my heart, almost too late, it was also discovered why it happened, radiation damage. Because of my involvement with other survivors who up to this point, were “different” than me, because I was “healthy” and they were not, I was encouraged to seek out the opinion and care of a particular doctor who had studied this issue, for decades.

Long story short, after two years of visits, multiple tests and procedures, many more issues were discovered with my body and the damage from radiation therapy, as well as the toxic chemotherapy that I was exposed to. My doctor used to joke “it would be so much easier just to be able to do some sort of full body scan.” But after all this time, issues were discovered with my lungs, spine, upper body muscles, endocrine system, gastro intestinal system, and additional issues with the cardiac system (keeping it simple).

For thirteen years now, during a time I always believed I was supposed to not even have to think about my cancer, late developing issues have been followed so that doctors would know when they had to be repaired. The obvious question is “why wouldn’t they just be repaired now if you know they are there?” And that is logical. The problem is another issue for us lymphoma survivors, we have a problem with bleeding and healing. Therefore, doctors do not like to do anything with us, until they must. Think of us as human ticking time bombs.

The list of issues I deal with, more than a dozen long is more than enough. But is it everything?

That is what made me think of the quote from a professional wrestler I watched in my youth. Just when you think you have all the answers, the question gets changed.

Recently, a fellow survivor just underwent a surgery for a a major blockage, in another major artery that most of us in the non-medical world likely have never heard. But yet, this is what was happening to her. Not being followed up for the condition, it was not only discovered, but doctors had roughly no experience with the combination of the repair and the damage from radiation damage, which clearly is what cause the blockage.

In my survivorship circle, no one has heard of this particular artery, also sharing the name with a dietary disease, Celiac, but I assure you, this artery is a big one. Obviously we do not give it much thought because it is not immediate to the heart. As it turns out, there are a lot more arteries that we should be concerned about, especially if we have been exposed to radiation therapy.

It is hard enough not to have the world of medicine 100% on board with dealing with late side effects from treatments. But the rarity of issues beyond heart bypasses and valve replacement has now put a question at the top of my list next time I get to visit with my doctor. With all that is known about my health history and what I must deal with, what about the Celiac artery? But also what about the renal artery, the mesenteric arteries, gonadal artery, and iliac arteries? And will I be lucky to find the doctor who will know how to handle these issues if they come up? For those of us treating in the last century, our scattered radiation fields have left us with this possiblity.

I am waiting to hear about the recovery from my fellow survivor. Ironically, she had just gone through another major cardiac procedure less than two years ago, and clearly, though it should have been on the radar, it was not even a blip. There had been no reason to look for it. But a happen-by-chance, led to its discovery, and for her family, they could not be more grateful as serious as this was, that it was caught and dealt with before it was too late.

There is a reason I never put the challenge “what else?” out there. I do not need the challenge. I have enough on my plate, all the while balancing what is important in my life, watching and experiencing my daughters grow up.

Irma Versus Elsa

Today is Monday. On a normal day, at 8am, our roads are packed with cars, heading to work, or since I live in a tourist area, congested even more with sightseers. But as I pulled out from the side street, there were only a hand full of cars coming in my direction. “Odd,” I thought to myself. Then I remembered, today is a “recognized” day off since the actual 4th of July holiday fell on a Sunday. A lot of places are closed today. But still, there should have been more traffic. Even on a Saturday, the flow of traffic is pretty heavy. While I am sure it is just the fact that so many places are not open today, the empty eerily reminded me of another time, September 10, 2017.

We are currently under a “tropical storm watch,” best explained with this meme:

A watch, means the ingredients are all there for impact from the tropical storm named Elsa. A warning means it is going down, imminent.

For Floridians who have been through multiple tropical storms, Elsa probably will not pack as much of an impact as many of our Summer storms that we get hit with. But to those not from here, after they get past the shock that this happens to be an area that sees a lot of these storms, or that the storms happen from June to November, they become Chicken Little.

Under normal circumstances, this fear, or drama, leads to a dramatic shift in behavior, bad and irresponsible behavior, not unlike the great toilet paper short of 2020 or the pipeline gas shortage of 2021. Panic sets in. There is a rush to wipe out store shelves as if they will be cut off from society for weeks. But not this time.

So the lightly travelled roads, and the lack of a last minute rush to the store, do not seem to be a reflection of Elsa approaching Florida. She is a serious storm as she has left some destruction, and cost peoples lives. As she goes passed the coast where I live tomorrow, it really is going to be just another storm with some rain and wind, and a really pretty and vindictive name, Elsa.

But the day before Irma hit in 2017, one of the monster hurricane’s in the record books, I do recall quite vividly, the emptiness of the roads, boarded up businesses and shuttered homes, as we all prepared for a potential and eventual head-on impact. Fortunately for us, there is no comparison between the two storms. And that means, that after Elsa passes us, the devastation and recovery will be nothing compared to Irma.

Decision By Bagel

Could a baked good have the power and influence, in making a critical life and death decision? To be fair, the particular bagel I am making reference to, is a great bagel. It cannot be found in a Starbucks or in the frozen section of the grocery store. It is baked fresh every day. It is definitely a great bagel. And after this morning, I am one step closer to making one of the more important decisions of my life, whether to get the Covid19 vaccine or not.

What? What does a bagel have to do with the vaccine? Why not just flip a coin if I am that uncertain? I assure you, the decision is not as easy as a flip. First things first.

I am not an anti-vaxxer. And while my initial support of the vaccine process was suspect at best, because of the processes in time that were not followed, it is clear, the vaccines that have been approved or approved for emergency use authorization (EUA), do have an impact on getting of top of, and staying on top of the Covid19 crisis. Also, understanding that the vaccine is not about preventing infection from the virus, the vaccine is about preventing the extreme effects of the virus, those that result in a higher likelihood of hospitalization or death. This is the thought process of someone not treating this pandemic as political or conspiratorial. This is dealing with facts.

I am immunocompromised. My spleen was removed in 1989 as part of the staging for Hodgkin’s Lymphoma. I learned early on, way before Covid19, I was more susceptible to viruses and other illnesses. I check off most of the other boxes to the susceptibility of the Covid19 virus. I have cardiac and pulmonary issues related to my treatments for my cancer over 30 years ago. I am also diabetic, and overweight (though not obese).

So, when the warnings came out from the scientists, because of my exposure and medical knowledge, I knew I had to take the warnings and precautions seriously. I could not afford to be affected by the smoke and mirror of politics and false choices being hurled through the television and social media.

Lastly, the warnings from my doctors were clear. “Do not get Covid19.” One went as far as to say, “with your issues, it will kill you.” So to be clear, I have taking this crisis seriously from day one. I made decisions that were difficult, such as making arrangements whether to have my children visit, health care, and such, even participating in court proceedings in reference to the Covid19 crisis, all with the mitigation recommendations and warnings in mind.

But you know what I did not do? I did not make it political. I did not make it about vanity. I did not make it a false argument over loss of freedom and liberty. For me, the science was clear. The exploding statistics did not lie. And I did it without being “ordered to do it,” which made it a lot easier. More importantly, the decisions that I made, impacted only me, and my loved ones. Check that, it also impacted others that I might come in contact with, because the care I was taking for myself, was also going to benefit others.

A meme came across my news feed recently. I am not posting it here, because it really is stupid, inflammatory, and completely erroneous in its bravado. But the commentary reads, “444 days without a mask, never tested, with no vaccine, no social distancing and no fear… we are still alive and all our people are still alive too.” And then refers to everyone who did follow the mitigations as “suckers.” The person who posted this, I know personally, and yes, while I know and disagree with their position, the meme definitely does not apply to him. I know for a fact that several in his circle were diagnosed with Covid19, including one death. I do not know if he himself or his family have had it, nor do I think he would ever publicly admit it if he did. But for him to post that meme, is pure bullshit.

Off my soapbox. The vaccine. I believe the vaccine does what it has been studied to do. We are still waiting for other studies to be completed, but for the purposes of saving lives, it appears Pfizer, Moderna, and Johnson and Johnson have products that will do just that. Statistics of success are adding up exponentially. And yes, while the concerns over long term side effects, something I personally deal with from my cancer treatments, it will not matter if you get Covid19 and die just because you did not get the vaccine.

For me, my reluctance at this point has been simple, and based on a condition with my body that I was made aware of a decade ago. When it was discovered that my body was dealing with issues related to my cancer treatments over thirty years ago, one of the studies done, was on titers, in other words, the ability of my body to fight illnesses, especially through vaccines. Three of the illnesses tested were influenza, pneumonia, and menningitis. To be clear, there are three illnesses, but within those illnesses, there are multiple types and strains. So, in determining titers, in other words, how strong your antibody response is, the tests are divided by types and such. In my initial case, I showed no ability to fight most of the types and strains of all three. That was kind of expected. But this was not what was expected. When I was given the vaccines following that determination, and then followed up with titer testing, I still was not registering much response with antibodies for the flu, pneumonia, or menningitis. This was not good. Boosters, additional doses of the vaccines were given and followed up with titer testing. I finally had a response to the flu, and a minimal response for menningitis, and nothing yet for pneumonia. Finally, a third booster would give me the response necessary for menningitis, and finally, only minimally at least, a response for pneumonia. One more booster for pneumonia that year, and I finally achieved immunity with most types of pneumonia (ironically, I did end up with pneumonia later that year, but not caused by a virus, rather, aspirating reflux, a different post is needed to explain that one).

But now you can see my dilemma. I know how my body reacts, or rather, does not react to vaccines. And there are many other fellow long term survivors in similar shoes as me. And up til this point, I have delayed getting the vaccine, on the simple fact, there have been no studies on boosters, which I am 99% certain I will need, no protocol on how/when to administer them and will they be safe.

One odd thing I do not give much weight to, is the fact, that if I would proceed with the vaccine, I would not allow it to give me the false sense of security that it worked. In other words, I would still follow all the mitigation precautions. The vaccine in just the two doses will not give me the ability to do as so many others are able to do now, walk around confidently that they will not get sick enough from Covid19 to end up hospitalized or dead. Keep in mind, with the vaccine, you can still contract Covid19 as many are finding out. The vaccine simply prevents the extreme situations of hospitalizations and deaths. I now know several people, who have had Covid19, had antibodies, got vaccinated, and then tested positive again. But the vaccine has done its job, preventing the extreme effects.

So, what does this have to do with a bagel? For several months now, I have been easing back into exposure, still following mitigation recommendations, masks and distancing. And one of the things I have been doing, is going to the bagel shop on Saturdays. And I have been noticing as time goes on, people and their behaviors as they have changed over the months, as our country gets a grip on Covid19. Plastic barriers between workers and customers are now gone, and so is mask wearing, probably close to 95%. In fairness, I live in Florida, where there has been much controversy over the willingness to cooperate with mitigation and collections of actual statistics, and massive amounts of denial of reality.

So while nationally, Covid19 numbers had gone down, they are starting to creep back up. We have seen this pattern before at least twice, and definitely through other countries. And living in a state that probably 65% of the residents deny or refuse to accept precautions, and a highly more contagious and lethal strain of Covid19 increasing cases nationally, this is a concern. It is not a concern for those who have been vaccinated as it has been determined the vaccine does protect against the variants just as it does the original strain.

But while we live in an “honor system,” people not wearing masks assumed to be vaccinated (you know what happens when you “assume”, you make an “ass out of u and me), and worse, those who still deny or treat the situation as political. And as I cannot tell at least by just looking at someone if I am safe around them, I have two choices I can make. I am already doing so, and plan on continuing to do so, follow the recommendations. I do not care about the stares and glares I get. Not one of those looking at me gives two shits about me living or dying. I have to do what I have to do, and the decisions I make, affect no one. Even better, for the ones who claim they lose their freedoms and liberties, I call bullshit on that too. Because with the exception of going to a movie, and long distance travel, I am doing everything I was doing before Covid19. I am still free. I still have my liberties.

The other choice, I am one step closer to making, and yes, it was because of this morning’s bagel. Years ago, when I first met with my doctor and we talked about my “luck” with not getting the vaccines, he compared my streak with that of someone in a casino. At the time, I was 18 years out from my cancer, so that meant 18 years I had not gotten a flu vaccine. That is when I got this speech. “So, you are familiar with a casino. And it does not matter if you are playing slots or cards or whatever. Let’s say you win 18 straight. Do you really know for sure that your luck is going to continue, especially letting it ride? How many more hands do you think you can get before you bust?”

Well, I am at that stage again. All of the facts are there in front of me. The vaccine works. In Florida, there are two types of people and they react differently to the facts. And then the state itself is not exactly transparent with its facts and statistics. There is an expression when it comes to Casinos, the games favor the house. The odds are not in the favor of the player. I know that, which is one reason I can be in a casino, and not have one itch to play. But with as much as I have on the line, finally getting to a stage in my life, I never thought I would get the chance to see, my daughters grow up, this decision continues to grow in importance.

I will get the vaccine, it is just a matter of when the time is best for me to do so. All I am asking for is one more detail, a booster protocol. In the meantime, I am doing what I have done with every other virus outbreak, learning to function with it. And if that means wearing a mask longer, social distancing, and washing my hands (seriously? We needed to be told to do this? Are people not going to do this anymore now that people are not following protocols? Ew!), I can do just that. And while it has no functional impact on you, it is to your benefit as well as my own that I do continue these protocols.

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