Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

The Rise Of Florida Dad

Florida Dad. I heard this the first time from my older daughter a few weeks ago as this is how I am referenced by her roommates at college. Initially, I cringed at the stigma of being confused with the moronic “Florida Man,” you know, the stupid that makes the news for doing dumb things. My daughter assured me, this was not the case. The title of Florida Dad was a good thing to be called by her friends.

I earned this title for the stories told by my daughter, from my longer kept hair, and the fact that I do not wear shoes, only flip flops, no matter what. I came off described as somewhat of a surfer dude, or surfer Dad.

Disclaimer, I have never even seen a surfboard. But I guess the rest of the stereotype fits. Like a sighting of Bigfoot, my reputation among my daughter’s roommates was solidified when they met me in person during a visit to campus last year, in October, in the cold, wearing flip flops, and hair flowing in the wind. Florida Dad was real. He does exist.

I need to preface this next part, when my daughter was younger, one of my ways to help make school events fun, I volunteered to disc jockey/emcee their events. She could not find a place anywhere to hide her discomfort, that her Dad was the DJ for her school functions. To be clear, at no time did I ever single her out, volunteer her during a group song, nothing. So, her evasion of me was really confusing. Her friends all thought that it was cool that her Dad was the DJ, but not my daughter.

Fast forward to college, and the “legend” of Florida Dad. That was my daughter’s word, not mine. I was cautiously curious as I was not sold on the whole “Florida Dad” title. I asked her, what upgraded me to “legendary status.” She had been talking amongst her friends, and it turns out, they believe I am capable of taking on, and overturning political decisions that are having an impact on them. Now while my daughter’s friends know nothing about me really, as far as I know, Madison is very well aware that many years ago, I ran for public office, school board, a decade ago. My intentions were clear, represent the entirety of the school district, taxpayers and students, protect the students and their educations, and so forth.

Honestly, I thought my daughter was too young to pay attention or even care about my campaigning. Sure, every now and then, she might mention that a friend would ask if the guy running for school board was her Dad, and occasionally a teacher would pass their support on to me, but other than that, I really did not think she paid attention. Well, she must have.

She and her friends had been talking recently about current events, and how decisions being made by politicians are affecting them, issues such as: being women, sexuality, and race. To be clear, these young adults have already voted at least once, so they recognize what needs to be done, to create change, and to protect their rights. My daughter must have thought more of what I had done, along with her knowing my personal feelings, and shared them with her friends, who clearly see me as an advocate and protector for the many issues affecting their lives: the right to women’s health care, LGBTQ+ rights, and protection from discrimination and bigotry, something clearly being pushed today by many politicians.

My daughter has evidently made it clear to her friends, that I am on their side. And I will vote to protect and support their rights. I do not believe the bullshit of a false fight of CRT, or pulling books from library shelves. I can see through all of this nonsense, as do others. But I also see, a whole new generation of voters, that also see these fights are false tropes. They are just looking for the right leaders to represent them.

My days in politics are long over. But I am proud to learn, my daughter evidently paid a lot more attention to the examples that I set for her and her sister. I am proud that my daughter will be an educated and informed voter. Evidently, so will her friends be as well.

As for me, I guess I will finally welcome my title, “Florida Dad,” because clearly, in this reference, it was a good thing.

A “Paul’s Heart” Christmas Carol

Every December, I am faced with the same situation as my birthday falls this month, renewing any or all of my driving information. My license is good for a number of years, as is my handicap placard, but my registration gets renewed every year, even though I have the option of multiple years. I choose not to do multiple years, because if something were to happen to my car, and I would need another, that would be a second registration I would have to pay. This scenario played out a few years ago, when my car was T-boned. The DMV, Department of Motor Vehicles does not give you a pro-rated refund for the time you no longer have the car, nor do they give you credit for the time left towards a replacement car.

There are very few places that you will wait longer in a line for service than the DMV; lines for rides at Disney, the post office in Naples during Christmas season, and a customer service line for any airline following the cancellation of a flight. But with a fully charged cell phone, I felt I could keep myself entertained for a potentially long afternoon, waiting to renew all three of my driving needs. Before I dove into my phone, I just looked at all of my paperwork to make sure everything was in order. For some reason, I immediately honed in on the “expiration dates”, or how long each would stay valid. This is when my mind started to take me down a path I try not to think about. Will I still be around when these things need to be renewed again?

As a long term survivor of Hodgkin’s Lymphoma, dealing with a plethora or multitude of late developing side effects, I live my life holding a “Pandora’s Box” underneath a “Sword Of Damocles.” I know most if not all of the health issues my body deals with in regard to the late side effects from my treatments. The only thing I do not know, is when each will become a problem to be dealt with immediately. One problem gets dealt with, another problem needs attention. And really, as bad as all this is, as long as I have skilled doctors who listen to their patient, me, and the knowledge I have about what I have gone through, I have managed to get through everything.

But there is a darker side to my survivorship, and shared by many other survivors, a stronger recognition of our mortality. Because long term survivorship is still a relatively unknown field in medicine, though medicine is beginning to catch up, unfortunately, not fast enough for us. With the internet and social media, fellow long term survivors can share their experiences with others, allowing us, in a way, to teach or train doctors how to handle patients with our needs by learning from survivors. In the circles I associate with, there are well over a thousand members on one of our social media groups alone, located all over the world.

Many of us survivors develop close bonds to others, even meeting other survivors in person. I can tell you there is no other feeling, that seeing someone in person, who is experiencing similar to what you are going through and the understanding that is shared and felt.

I mentioned mortality earlier. Most of the other survivors I know, we all know, that regardless how long we have survived our Hodgkin’s Lymphoma, while a great number of survivors may be fortunate to never have to deal with any late developing side effects from their treatments like I have, there are many who have. And then there are those who are completely unaware as to the mysterious things that are happening, unable to put two and two together, to connect the dots between declining health and late side effects. Because they just do not know, and were never told it could happen.

In any case, if we are lucky, we have a doctor that has knowledge and understanding of our unusual health history. We are even luckier if the health issue de jour that we are dealing with, can be dealt with and healed. And then there are times, that our luck turns south, and the prognosis is not good for a recovery. And then, there is the everyday dangers that even healthy people face if we overcome our health issues, crossing the street, driving a car, slipping in the bathtub, also known as a sudden accident. The dangers for us long term survivors is that our bodies have been through so much trauma, we are already at a disadvantage for a doctor trying to save our lives, with our deteriorated body conditions. The most glaring of the facts of our mortality, while the survival number of years is in the decades, that does not mean well into our years of life. In fact, as one fellow survivor once wrote, many do not reach past the age of 60. Combine that with the longevity of my paternal side of the family with an average age of 55 years old, and I am more than aware of the odds against me.

I have laid the groundwork. I am at the DMV. I am aware of my unique mortality. I am approaching another year older, another year older as a cancer survivor. While I wait for my number to be called, for the DMV that is, not the mortality, my mind begins to wander. I can visualize someone, looks like my late father. Acknowledging a conversation that we had with each other when he was alive, he reminded me in this thought, that I was a survivor, there is no such thing as giving up.

My father was absent most of my childhood, yet he was able to remind me just how “good” my life turned out to be. No, it was not a “Norman Rockwell painting,” but I did okay with what I had and who was not in my life.

And then we began talking about my early adult years, in particular, the years that I fought Hodgkin’s Lymphoma. We talked about my later years, with all the health struggles I had faced, but he would remind me, all the lives I had touched, including his as he faced his own battle with lung cancer. The fact was he reminded me, I had done so much in my life, not just for me, but for so many others.

And then the image faded away. In fact, not just my dad, but all the things we had talked about, were all gone. While I did not have a “grim reaper” in this moment of wandering, it was clear where my mind was. I am between two age medians, my paternal average of 55 years of age, and the seeming equivalent to climbing K2, reaching age 60 as a cancer survivor of over thirty years.

Tomorrow is my birthday, turning 57 years old. The awareness of my mortality is both a blessing and a course. So far, having the doctors that know how to deal with the issues from my late side effects, has kept me alive. Constant surveillance keeps my health from getting to the life and death moment as happened in 2008. As they say, what is happening to me cannot be reversed, but it can be slowed down, and managed (to a degree).

But I have a knowledge of so many other survivors who have passed, and while many have passed as a direct link to their late effects, there are also others who passed away due to an otherwise common event.

Finally, there will come a time, that all the things that doctors have done to save my life over the decades, will need to be done again. My history and treatment of Hodgkin’s Lymphoma, made every one of these original surgeries high risk for complications and death. Having to do any of them again, the risk is even greater of a complication.

No, I do not need that ghost of future standing in front of me. And if I had the chance, I would give him the push into the grave, because in my heart, I am far from ready to have this thing called life, end. One time unthinkable when this all began, getting to watch my daughters grow, I have seen them come to the end of high school, and begin college. And there are more milestones that I want to see that involve them. And at this point, the way I feel physically, I believe I will get to see those days.

But then there is a point when I say, no more birthdays, the I will not get older. No more new years so that I will not pass another year of survivorship. Just let me ride this thing out to watch my daughters do what I have dreamt their whole lives to do.

It is important that anyone reading this understands, I do not go through my life, worried or thinking I am going to die every day. Far from it. Each morning, I wake with the intention of seeing another day. I have so much I want to do. It is the reality of the knowledge I have, that just reminds me, I am not the one in control. To quote the lyrics from the Bon Jovi song “Live Before You Die,”

“I made mistakes I caught some breaks. But I got not regrets. There’s some things I don’t remember, but one thing I don’t forget. When you’re young you always think the sun is going to shine. One day you’re going to have to say hello to goodbye.
Shout it out let someone somewhere know that you’re alive.
Take these words wear them well, live before you die.
You learn to love to live. You fight and you forgive. You face the darkest night. Just live before you die.”

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.

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