Paul's Heart

Life As A Dad, And A Survivor

32, But Who Is Counting?


Each year, when these special dates pop up, I can somehow discover that there is still room left to be humbled. Today begins my 32 year recognizing blood cancers, in particular, Hodgkin’s Lymphoma. Diagnosed in November of 1988, I finished my treatments on March 3, 1990, the date I consider my anniversary as a survivor.

To this day, still considered a rare form of cancer, less than 9,000 will be diagnosed with Hodgkin’s Lymphoma according to the NCI’s Division of Cancer Control and Population Sciences (DCCPS), making up .5% of all new cancer diagnosis. From 2011-2017, it carried a 5-year survival rate of 88.3%, one of the highest rates of survival for a cancer, which depending on the type of Hodgkin’s, some sub-rates can reach as high as 94%.

While these are fantastic numbers, there is a downside. Blood cancers do not get the recognition and support that big cancers such as breast cancer, lung cancer, and colon cancer receive. And this by no means is meant to rank one cancer over another, but it also does not mean that blood cancers should not have just as much focus, especially with a success rate as high as it does. And this is what that matters.

I was treated with 4000 grays of ionized radiation and a very toxic cocktail of chemotherapy. Both of these modes are no longer used in treating Hodgkin’s and this is due to research and progress in just three decades. But as anyone involved in radiation will tell you, being exposed to the amount of radiation I was, is a very bad thing. Sadly, there are survivors before my time, that were exposed to far worse levels. And out of the seven drugs I was given to fight my cancer, three are still being used today, still dangerous, but still necessary because nothing has been found to replace them. And with a high success rate, science and research does not really place that urgent a need to “finish the job.”

My health issues from my treatments are well documented throughout the years of “Paul’s Heart.” Over the last thirteen years, and twice in the last three years, I have faced lifesaving corrective surgeries to my cardiac system (double bypass, a stent, and carotid stenting).

And as big as the number 32 is, .2%, or roughly 960 annual deaths from Hodgkin’s (or its complications from treatments) is an even more important number. There have been so many that I have met in person, or through the internet who have inspired me, encouraged me, who are no longer here, placing me in the position that I was once in, hopefully providing inspiration in longevity for those Hodgkin’s patients and survivors who have come after me. My friends who have passed on are never forgotten, and many, their loss still continues to have an impact on me.

This year, as well as the last, has been a challenging one, with surviving cancer not being enough. For over a year and a half, and likely for the rest of our lives, at least mine, Covid19 will always be a part of my survival, and the need to avoid it. I do all that I can, from recommended mitigation efforts to prevention, and so far it has worked. I credit my endurance with this effort to what I went through with my battle with Hodgkin’s. I know what needs to be done because I trust my doctors, and I have excellent support behind my efforts. I can only wish it did not take a health crisis like cancer for people to understand the seriousness and the steps needed to get through this crisis.

In November, I will mark thirty three years since my diagnosis, and in March, my thirty second year of survival (having finished my treatments). My special calendar on this page has my 40th countdown set, but if I am being totally honest, my goal is to hit the 50th “club” of which I actually know quite a few. Imagine, there are people who have survived cancer over five decades. I never thought that would have been possible 32 years ago.

As always, thank you for reading, and thank you for your support.

Paul

1st Day Back To School… Wait And See


Tomorrow, many more children will return to school, many for the first time physically in over a year and a half, due to the precautions and protections of Covid19. Several states children have already returned to school. It is at this moment, are we learning anything in the past few weeks, what works and what does not work, in regard to living in a world of Covid19 and our schools?

The first day of school has always been exciting for me, and much to the chagrin of my daughters, it always meant a photo that morning. But as my daughters begin tomorrow, that excitement has been tempered by caution and wariness.

To be clear, I want my daughters physically in school. The last year and a half, honestly has had mixed results in both grades, study habits, and social skills. When all is said and done, I believe the best thing for them all around, is to be in school. But I also want to be clear, this can only be possible if done safely.

After a year and a half, we are all “experts” now in Covid19, what works, what does not work, who is to blame, what precautions need to be done and what are foolish. Many of us have gotten our experience and degrees in Covid19 from social media. Most of us, have come to accept, this crisis was new to not only us, but to science. And while we expect science to be the “truth”, it is what it is, science we are learning, is about getting to the truth. Which means, we are learning as we go along. What we think is the problem and solution, can change. Just because something may be discovered to be a wrong thought, does not mean when the correct answer is found, that science cannot be trusted, quite the contrary. It is because science did correct itself, that we should trust it even more. Science did not stop looking, just because it thought it had all the correct answers.

Schools in Texas, Georgia, and my home state of Florida have been back for several weeks, and other states around the country have also returned. In these three states however, one thing stands out, all have governors that stood in the way of taking precautions, during what is called our “4th surge” of Covid19, and the count of children sick with Covid19, once thought of as inconsequencial because of its lower risk to children, is quickly becoming a major concern. Pediatric hospitals being inundated with children needing hospitalization, way beyond what we saw last year. And yet, the governors, and many residents of those states, still fight for any mitigation efforts to protect their children and the staff responsible for them.

For me, I am not thinking about the start of my daughter’s senior year being a milestone, getting a “last photo” of her last year of high school, or the fact that her sister is right behind her. No, instead my thoughts are two-fold. Has the school district done all that it can to assure my daughters safeties, and what about all the potential “nut jobs” willing to disrupt and cause problems with the efforts of the district?

The answer to the first question is easy. Yes, I know that my daughters school district has done everything possible, and are following not only federal recommendations of the CDC, but also of the state’s health department. Further, the district has the benefit of an extra layer of caution, having a county that has its own health department. The district is following all the levels, federal, state, and county when it comes to mitigation.

The steps that district has taken has earned it recognition by the CDC, to earn status as a subject for a retroactive study on the mitigation. Retroactive meaning, looking back, to see “why” the things worked the way that they did for the district. Engineering controls such as air handlers and sanitation efforts are critical, and yes, cost money. But this is a key step to getting the kids back in the classroom, especially when a district this size, is unable to make the classrooms comply with the social distance recommendation. So, of course, that also leads to vaccines and masks. With my daughters in high school, they are of age to have been vaccinated. But does this mean that all teen student have been? Of course not. And definitely, none of the elementary students have had any opportunity. That means there is only one other possible form of mitigation to help, not fully prevent, but help reduce the opportunity for spreading Covid19, masks. I will not spend time on this post about how many in the district feel about this. All you have to do is go back to a couple of my recent posts.

There is one more very important layer that the district employs. I mentioned that the district has access to the county health department. This allowed the district early on, to impose contact tracing and testing of its students and staff. In other words, they can catch most cases before infecting anyone else. This is important with the likelihood of selfish or ignorant parents, having been exposed to Covid19, sending their children infected to school anyway, for whatever reason, which is not acceptable.

I will say, my daughters district does appear to be more of the exception than the rule in that state, by looking at social media posts from friends elsewhere in the state. One friend’s school district may as well be compared to Florida’s attitude, so it is likely just a matter of time until that district realizes its mistake.

As I look at my daughters first day of school tomorrow, I have hopes this will be a year where they can get back to focusing on school, joining clubs, going to activities, and hanging with friends. My daughters are doing their part to go in that direction, even though vaccinated, respectful and caring of those who may still be at risk. None of us, want the return to virtual studies, but if the district ends up compelled to do so, so be it. Whatever keeps everyone safe. If all could just work together, instead of against each other, this may have been over a long time ago.

With Texas, Georgia, Florida and others, we have had a chance to see what is not working, at the expense of students and staff. As schools continue to open this week and the coming weeks, hopefully they have seen what is not working. We just have to wait and see.

Infuriating Is An Understatement


As schools continue to open across the country, one thing we have not been able to do as a country, is come together and just do the right thing for EVERYONE. And over the last several weeks, there have been plenty of news reports all over, of contentious school board meetings, as they often are, between the board and the public, getting out of control, often requiring the need for police support. The school district where my daughters attend is no exception.

I remain in public discussion with my former school district as it often gets pointed out to me, why I have any right to comment on anything there since I no longer live there. And I point out that my children do attend there, so it does matter to me. In full disclosure, I also do have a history with this district, as I was twice a candidate for the school board, beginning a movement that brought much needed sweeping changes to making it the great district that it is today, and in capable hands of dealing with this horrific crisis of Covid19.

Also in full disclosure, I do believe in the 1st amendment, and the right to peacefully protest. And so, having heard how bad the school board meeting went the week before with boorish behaviors of so many, that police were called in for safety precautions, I thought I would tune in for the next meeting. The preparations for this meeting were excellent. A larger venue to allow social distancing. A time limit on public commentary, not for the sake of limiting someone’s voice, but to hopefully keep speakers focused on what they wanted to get across (I have been to meetings where one person basically repeated the same sentiment, four different ways, for over twenty minutes). With the number of people expected to turn out, no one wanted to be at that meeting until the wee hours of the morning. Remember, most school boards are volunteer. Most importantly, police were already present. Rules of participation were read prior to the start of the meeting, consequences announced for anyone veering from those rules, and the meeting went through very timely, with little disruption other than applause for each side’s speakers.

While I am clearly on the side of precautions, which the district has been recognized as a leader by the CDC in the steps that they have taken to ensure safety while operating the schools, via facemasks, distancing, engineering, sanitation, and testing, there is clearly the other side who opposes all of those methods, for whatever their reason. Regardless if I believe they are wrong for those reasons, and they are, they have the right to speak. I even encourage them how to speak so that their words come out as respectful and factual. Alas, there were 3 or 4 “buffoons,” who chose to waste their two minutes of their 1s amendment right to protest the pending mandates from the board by spouting off all kinds of political bullshit that was not going to have any impact, just look like fools doing it. Oh, and the part about being “factual,” yeah, that did not happen either because comparatively speaking, the facts presented by the “anti” held zero weight in comparison to those that were in support of any mandates to keep the children and staff safe.

Now, an argument can be made, that because so many people spoke up against, they must be the majority. That is clearly subjective. A simple theory, people who are content do not normally participate. People who are upset, will speak out. That is all there is to it. The majority is not against mask mandates and other mitigation. They are just the noisiest.

But here is one point no one, anywhere, in any state or locality, who is opposed to any mitigation has been able to answer or offer, any other alternative. Okay, I get it, you are anti mask (though I really do wish you would just admit that you don’t like the way it makes you look instead of offering all other bullshit). But what can you suggest in its place? Sure the mask is not perfect, but you know what it prevents? Stupidity and selfishness, and really, poor hygiene. I witnessed someone just the other day, a grown adult, just let out a sneeze all over the floor in front of her, not even attempting to cover her snot hole. THAT IS WHAT THE FUCKING MASK IS FOR! Because too many are pigs and willing to direct spray their germs. Need proof? We needed to be told to wash our hands! And then there is this one.

A small child wanting to go to school. Mother explains he is only on day 7 of his 10 and is reminded of another student who had to do the same. The problem? I heard the conversation which means the kid was not in quarantine, nor was his mother and family, AND NONE OF THEM WERE WEARING A FREAKING MASK! IN PUBLIC!

Stupidity and selfishness at its finest.

So, some time after the board meetings were over, on two separate nights, assholes went on a vandalism spree, spray painting anti messages on various properties, schools and other public properties. I have to laugh, because those commenting on the news articles are making the assumptions that it was kids doing it. Let me tell you something, the kids do not care about the mandates. They just want to be in school. They will do what they have to, to achieve that. No, I 100% believe these were disgruntled adult morons like the buffoons at the school board meeting. And now, the taxpayers get to pay for the clean up.

I am both excited and anxious for my daughters to return to in class schooling. The results of the last year and a half are mixed, some good things, some bad. But when all is said and done, I believe they are better off in school, but only if it can be done safely. The school board has done what they can to make sure of this, and will make the difficult decisions again if they must. But at least I know they have the safety of all in mind.

Hopefully those involved in this vandalism are caught, and punished to the fullest extent of the law.

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