Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

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.

There Is Life After Hodgkin’s Lymphoma

As Lymphoma Awareness month rolls on, I want to write a lighter piece about Lymphoma, about life after Lymphoma. While I wrote last, that we are never really over “cancer” even when we hear the word “remission,” there is still a life to be lived.

One of my favorite places to visit both as a child and as an adult especially with my daughters, was a place called “Boulder Field” located in Pennsylvania. I spent hours upon hours climbing all over the rocks, never taking the same path, or hiking the same combination of boulders. Each trip was different. It is kind of symbolic for all the different things that would be ahead of me in my life after Hodgkin’s Lymphoma. The ironic thing, prior to my cancer, I do not believe that I was doing much of anything with my life worthy of fulfillment or purpose. I had been content with living a “party” lifestyle that my first wife and I were enjoying. No commitment. No plan. Just show up. That was our “normal.”

But there is a phenomenon known as a “new normal” that cancer survivors experience. Resistance is futile, because it is just something that happens. It would have been easy to pick up right where I left off before the rude interruption from cancer. But with all of the toxicity and damage I had gone through with my treatments, I had to be more careful. A new “normal.” I had follow appointments and testing to undertake as part of this new “normal.” For the first time in my life, at the age of 24, I began to think of other things I wanted to do with my life. And part of that was not to let cancer dictate my new “normal.” This new “normal” was going to be what I made it to be.

A couple of years after my treatments ended, I led our church’s youth group. Actually, this was the first of two that I had been in charge of over ten years. I had done something that other predecessors had not done, and that was open the group to all ages of children, not just the teenagers. Sure, their activities were grouped just as the different levels of school; pre-school and elementary, middle school, and high school. But at least once a year, the entire program came together on a Sunday dedicated to the youth of the church, and all participated and led that Sunday’s services, no adults. The program had all kinds of activities for outreach, and the older kids, the teenagers got to experience road trips such as ski trips and white water rafting. It was an honor to watch these kids grow. In fact, over twenty years later, I am still in contact with several of them, now parents themselves.

I would get an employment opportunity that would change my life forever, working for a major pharmaceutical company in medical research. After years of trying to improve my otherwise mediocre employment situation, and in spite of having no college degree in medical research, after just one interview, I was hired. The job not only provided a much better salary, but something up until that point, since my cancer diagnosis unobtainable, health and life insurance, without being discriminated against. I would actually handle one of the drugs used in my chemotherapy cocktail. But the biggest reward was to be a part of some very important discoveries against several major diseases.

I began to travel. One wish I had was to see my favorite football team, the Seattle Seahawks, play their arch rivals, the Raiders. That trip out west, would change the way I travel forever. For me, the trip became about opportunities. On this trip, I would actually get to meet two fellow Hodgkin’s survivors in person who up until that point, I had only known through emails. Both were a bit younger than me, and diagnosed a few years after my treatments had ended. But I got to see several places I had never seen before, Seattle, Anaheim, Bakersfield, and Lake Tahoe before returning home. From that point on, nearly any trip I made after that, would almost always involve an opportunity to meet other survivors.

But one of the biggest events, which actually happened twice, happened because of the one long term and permanent effect from my treatments, the inability to have biological children. On two separate trips across the world to China, twice I became a Dad. Every day with my daughters has been a blessing, and many times a new experience, likely an experience that never would have crossed my mind such as swimming with dolphins and stingrays, exploring caves, and so much more. Nothing could be cherished more, than being their Dad, each and every blessed day. Both now in their late teens, they are soon ready to go out into the world, and make their own memories, and for that, I am truly blessed as that spectator.

I will only mention this part briefly, well, because it speaks for itself. For over a decade, I have been writing about my experiences as a cancer survivor, whether it be on “Paul’s Heart,” published in various medical newsletters, anthologies, and am currently working on four books of my own. This has led to opportunities to speak in public at various functions as a living, breathing long time survivor of cancer. A frustrating thing for me really, that more of a big deal is not made about us. But perhaps the coolest experience of my writing career, was to have something I wrote performed live:

An unexpected direction in my life occurred back in 2009, when I decided to enter politics, at our local school board level. I was unhappy with the way the current school board had been behaving and many of their decisions, which I felt would have an impact on my daughters educations. And so, I enjoyed the experience of two campaign runs. It was a wonderful and exhausting experience, there were so many memories made. Several long term friendships came from my running for school board, friendships from running mates. I wanted to, and felt that it happened, to make a difference for my daughters educations, which of course would benefit other’s children as well.

The Covid19 pandemic gave me an opportunity to return to something I enjoyed doing, playing guitar and piano again. I won’t ever do it publicly, but I am having a lot of fun again, expanding my musical horizons. Combined with my singing, I even wrote my first song and recorded it, a very cool experience.

No, my life did not turn out at all the way that I thought it would. But then again, I never thought I would get cancer either. But as many put it, “I won’t let cancer define who I am.” I am far from finished writing my story. And to do that, I have to keep living my life after Hodgkin’s Lymphoma and in spite of what it has left for me, just as my fellow long term survivors.

Let’s Make A PACT For Cancer Survivors

I need to briefly mention a topic, which unfortunately is going to sound political, because of the current state at which it stands. But I have no choice, because the circumstances, rather conditions, can actually relate to cancer survivors.

I am of course referring to the PACT Act of 2022, also known as the Promise To Address Comprehensive Toxics Act of 2022, named after Sergeant First Class Heath Robinson. There is a lot covered in this bill, but the main crux of it, is that all military vets would have health care coverage for exposure to toxicities while serving in our forces. It is my understanding that this would even impact vets going back to the Vietnam War. Sounds like the right thing to do, right? Brave men and women of our country risk their lives not just from enemy fire, but various toxic exposures, that affect them the rest of their lives. We should want them taken care of, right?

Our government seemed to agree, as it went through the legislative process, the bill was introduced, passed through the House Of Representatives, and then passed the Senate. It should have been on its way to President Biden to be signed into law, and our vets would have been take care of. Instead, a procedure brought the bill back to the senate, where enough senators changed their “yea” votes to “nay,” causing the bill to stall. Hence, our vets are still left not being taken care of.

Bottom line, it is political games on both sides that caused this, and unfortunately we, are left to figure out who is telling the truth as to why. And while both side bicker, vets are dying; vets are continuing to get sick. In the short time since I started writing this post, the bill finally did pass, yet again, with an overwhelming majority as occurred originally. Please bare with me as the few days that recently passed, the result, taking care of our servicemen, is just one example, of doing what should have been done in the first place.

The solution is simple to this political gamesmanship… universal health care. Just like I stated as our health care system was rocked with the onset of Covid19. We learned just how valuable, a right, not a privilege, health care for all, just like nearly almost every industrialized and civilized country has, could have made a difference. The fight for our vets was no different. Every vet who has served, no matter when, should have coverage to assist their health care.

One of the key “beyond all doubt” issues of the PACT Act of 2022, is the presumption of service-connection. This means that for example, a vet who was exposed to the burn pits in Iraq, and develops lung cancer, it does not matter if he was a smoker, or worked in a quarry prior to his service in the military, the service-connection, his exposure to burn pits, closes the door to any fights that delay or deny treatments, getting the vet hopefully on the path to recovery. Sounds like a good thing, the right thing to do, no?

Enter a celebrity, former TV talk show host, comedian, and advocate, Jon Stewart. There are several around me personally who will chirp up constantly, “what business does a comedian have commenting on governmental affairs?” as if what he does for a living makes any of his statements less credible. But anyone who has followed Stewart over the years, knows that Stewart is well aware of the ins and outs of our government.

In June of 2019, Stewart found himself in front of a congressional committee, well, not really (due to a lack of representatives for the hearing who felt it was not important enough), to advocate for benefits for first responders of “9/11”. A similar situation, those who responded to one of our darkest days in history, were dying from exposure to the devastation at “ground zero” following the collapse of the twin towers in Manhattan. A similar situation, many first responders were left unable to get the medical help they needed, due to lack of insurance or other beaurocratic bullshit, getting sick, and dying. I say he was “not really” in front of the committee, because of the absence of so many representatives, who did not share the urgency or importance to attend the hearing themselves. Stewart would tell those representatives, “you should be ashamed of yourselves.” The brief history of the bill went like this: the original bill expired as planned in 2004, re-established in 2010, renewed in 2015. But by 2020, the funds were expected to be gone, without any further legislation.

Stewart’s goal, was to get a bill passed, to last 70 years, as many first responders were young enough, to live long enough to possibly reach their eighties and nineties, and likely developing issues related to their efforts on September 11th. The “Never Forget The Heroes Act” was eventually passed. Who knows where our first responders of 9/11 would be now if it were not for the advocacy of a “comedian.”

It took a long time to get to this point, but, if you have followed my blog for any length of time, you know I have a complicated health history. It is one that up until recent years, not many in medicine not only did not know about, but when faced with issues like mine, did not know how to diagnose them, or treat them. Like the situations mentioned above, the burn pits, and the rubble of Manhattan, causing late effects on the health of servicemen and first responders, cancer survivors, and if I am being specific, Hodgkin’s Lymphoma survivors can all too well relate to the situation of late effects.

Cancer survivors have really never been expected to live long. There is a popularized milestone of “five years,” a magical number, that if doctors were forced to say you actually beat a cancer, it is once you hit that five year mark. But for many Hodgkin’s survivors, we have lasted well past that five year mark, many of us into our third, fourth, and fifth decades. But just as servicemen and first responders developed issues over time from their exposure, we Hodgkin’s survivors developed issues over time, from the very treatments that put us into remission. The lousy thing is, back then, and just like originally the burn pits and ground zero, science was not prepared for and did not anticipate the health issues we all would face.

But where is our comedian coming to our aid, to be our voice, to advocate for our care, that we need to survive issues that have taken a toll on any number of our body systems whether cardiac, pulmonary, secondary cancers, you would not believe how long that list goes on. If it were not for fellow survivors, and one of the few good things about social media, we survivors would never have found each other, and given each other the support, and knowledge of our own experiences to each other, and continued to survive.

But where is our celebrity willing to speak up for us? There have been plenty of celebrities who have actually had Hodgkin’s Lymphoma (actor Michael C. Hall, pro hockey player Mario Lemieux just to name two). Sadly, as we hear about them, and we hope, “hey, now maybe a spotlight will be on us, and we can finally get the help we need.” Nope. Meh, we actually have an organization actually using the name Lymphoma in its title, the Leukemia and Lymphoma Society. You would think they would help out long term survivors at least with advocacy, if not for guidance and information. Nope. There are a number of other organizations in the cancer world, but none, really willing to take the megaphone like Stewart has done for both the servicemen and women, and first responders.

It was long term Hodgkin’s survivors who finally took the initiative on their own, to create our own organization, geared at survivorship. And because we are a group of people, in the hundreds, located all around the world, this group is appropriately called, “Hodgkin’s International.” But I am going to bet, that outside of my circle of survivors, and unless you have heard me refer to this organization before on this blog, you probably have not heard of that. Why is that?

So, as I said earlier, with some of my friends who object to celebrities chiming in for causes, excuse me for wanting someone to step up for me and my fellow survivors, help put a light on Hodgkin’s International. Help get us the medical care all of us need to continue to live our lives after cancer. Yes, this would be so much easier, if we could just have universal health care, and that would not just cover the servicemen and women, first responders, and cancer survivors as well as cancer patients. It is time to stop treating health care a privilege for only those who can afford it, and a right for us as human beings. It is time to take care of us, long term cancer survivors, for the things that happened to us, because we were treated and “cured” of our cancers.

“But wait, how much more is supposed to be spent on you? You got cured, how much more do you want and expect me to pay?” That was an actual comment made to me, and a topic for a different post.

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