Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Politics”

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.

Buh-Bye


I feel at the moment, like life is imitating art. The above video clip actually applies to this situation. The skit from 1994, featured actress Helen Hunt and SNL actor David Spade, as two flight attendants for a fictional airline, Total Bastard Airlines. The tone is set right from the beginning as the plane is landing and the pilot announces, “this concludes the safest part of your journey.” From there, passengers are rudely guided off the aircraft, neither flight attendant open to any other conversations or questions. Any attempt at such delay of departure, would result in the response “buh bye” from either or both flight attendants.

So a couple of days ago, I was feeling deja vu with this skit. While the skit clearly was parody, my situation was far from it. But the ending result feels the same. Especially when you are someone who has a slight cynical edge to his personality, like I do when it comes to large organizations and corporations. ESPECIALLY one that you feel personally connected to.

If there is one thing that frustrates most of us long term cancer survivors, if not all of us, is that we feel abandoned by science, medicine, cancer organizations, even the one that specifically uses the actual cancer we had in its name, Lymphoma, because when we need help, support, guidance, all too often, we have only peer support to rely on. Some of us are lucky in that we found doctors who do realize that there is more to beating cancer, such as surviving the treatments afterwards. At least now, again, courtesy of peer survivor efforts, there is finally an organization, non-profit, that does exactly just that, provides support, information, and guidance for those dealing with, or surviving from Hodgkin’s Lymphoma, called Hodgkin’s International.

But back to the “other” lymphoma” organization.

From the beginning of the pandemic, I have been clear that I have relied solely on information provided to me by my personal medical providers, a.k.a. doctors. I tolerated some trying to convince me that I needed new doctors because what I was told went against what some wanted to believe, conspiracy theories and flat out misinformation, to protect their political agendas and opinions. In the middle, was science, their efforts compromised by the relentless and merciless mortality of an unknown disease racing to get information out before all the lies.

And while the CDC, FDA, WHO, and every other scientist were looking for solutions for normal or “healthy” people, you had those like me, immuno-compromised, making me even higher risk, making my survival as urgent as the elderly that Covid19 was killing rapidly, the Leukemia & Lymphoma Society stepped up, performing their own study, a much smaller scale, on patients who either have or had a form of blood cancer such as leukemia or lymphoma. When vaccines became available, it was the LLS that had taken the time and effort to study how many doses it could take to establish immunity, and just how long immunity might last.

The rest was up to me. My doctors were clear. Do not get Covid19. If I did, with the condition of my heart and other issues, I would likely die. The orders were clear: wear a mask, wash my hands, social distance, avoid large indoor gatherings. You know the drill all too well by now. The last part of the mitigation was to get vaccinated, something I knew that I would have issues building immunity to based on other vaccines that I have received in the past. Bloodwork, known as titers, would be done before and after each dose to check for responses. That is how science works.

For me, it went as expected. 1st dose, no reaction to the vaccine. 2nd dose, just a slight reaction. It was the 3rd dose, considered a “booster” for the healthy people, that finally put me at a level of immunity that others had achieved with two doses. But bloodwork would show months later, the immunity did not last like it was for others. I needed a 4th dose to get my immunity back up, which bloodwork confirmed. Knowing my history with vaccines, especially this process, I know I am a candidate for dose #5, but how soon, and now which vaccine, even the upcoming new variant specific vaccine, would I need? And then what after that?

So I reached out to the LLS for my “what’s next?” I wrote, “I received my 4th dose early May, followed by bloodwork two weeks later. My question, will their be additional bloodwork, and will it have any impact on a decision towards a 5th dose?  And if a 5th dose determined, will I be waiting for the pending vaccine covering the variants that is rumored to be coming out?” In other words, with so much still to be learned about Covid19, and from known results of the study thus far, there are those like me, who clearly will need continued support.

This was the response I got. “Thank you for your participation and update. Unfortunately, we are not testing prior to fifth doses or after. Based on CDC guidelines, you should receive a fifth dose at least 4 months after your first booster. We are giving our recommendations as the CDC advised.”

In other words, “buh bye.” I am now on my own. The LLS know there are immunity issues, but this is where they get off.

Of course I know I am wrong for thinking that there was a potential gain to be had for us long term cancer survivors that nearly EVERY organization and most medical personnel have forgotten about (here comes the cynicism). This study was just to find out how the body reacted to both exposure to Covid19 and the vaccine. It does not make it sting any less the fact that an organization with the name of the disease I fought 32 years ago, the Leukemia & Lymphoma Society, still does not recognize or offer any substantial support or guidance for us. As I said, I am thankful for Hodgkin’s International (www.hodgkinsinternational.org) because they are doing what others are not.

So, just as I do for other viruses and other illnesses, I use precautions and awareness of my surroundings and those I am around. I trust my doctors to order the right surveillance, recommend the proper vaccinations, and hopefully the ability to talk me into getting those vaccines. I have resumed what I would call my “pre pandemic” life with only one major adaptation, wearing the mask around others. I am literally able to do everything I was before and not contract Covid19, something just as lethal to me as pneumonia, meningitis, the flu, and actually, wearing the mask will assist to some level, protection from them as well. Because, in full disclosure, I do not get every vaccine recommended, and it literally is a judgement call on my part, taking only into consideration, my doctor’s opinions, science, and my gut. Not the media, not social media, and not what others tell me. I do what is best for me because I know what is best for me.

A Chapter Has Closed


Back in 2009, as my older daughter was preparing to begin first grade, our school district was in turmoil. The teachers were in the process of negotiating a new contract, and the school board had chosen some very unfortunate methods in dealing with the teachers and the negotiations. Someone from the school board felt it was wise, to take out a full page color ad in the local newspaper, stating the salaries of every teacher, guidance counselor, and school nurse by name. The intent was clear, to rally the community against the teachers, and against any opponents challenging school board members in the next election cycle.

It was a huge mistake for them. A sleeping and ignorant giant had been woken. Like most, up until that moment, I was like many, who had no knowledge of school district operations, and just exactly what is expected of a teacher, which is what makes them worth every penny they are paid (and this was before the constant school shootings we expect our teachers to die for, or be exposed to lethal viruses). If there was one thing about me I knew and despised, it was bullying. And I knew from experience not only when someone was being bullied, but what was behind it.

And so, I attended my first school board meeting, actually my first public meeting ever, just to see what was going on. That first meeting was all that was needed, to set me on a path I never saw coming, running for a public office. There were nine bullies on this board, five were going to be up for re-election, and all five needed to go.

There were several problems that I was about to face as I began the process of campaigning for one of the school board director positions. One, I HATE POLITICS! This was a war cry my campaign cringed every time those three words left my lips. But I was not a politician, and that was the reason why I kept repeating this credo. Another big problem was that our country is mainly a two party political system by majority, something our forefathers warned against (please note, there is a difference between understanding history and not being political). I was an independent registered voter. And with my state being closed for its primaries (being only able to vote for those in your registered party), an independent candidate has an uphill climb to get to the general election. I would have to swallow political “poison” and force myself to choose a side, neither of which I believed in 100% to have a chance. And even this decision was not mine to make as the incumbents on the board, were all Republican, who all had a grip on their seats for decades. Clearly I would not be able to unseat them as a conservative. I had no choice, but to run as a Democrat, and changed my voter registration to do that.

There was one final hurdle to get over. Other well known candidates had tried to go against these power hungry bullies, and lost. There is an expression, “strength in numbers.” That saying applied in this case. Often, only one or two candidates would run against the entire slate of the other party, clearly leaving them outnumbered, out-fundraised, and out-campaigned.

And with that, I met four of the most wonderful and diverse people, a tech guy, an accountant, a lawyer, and a retired school teacher. But we shared one thing in common, we all had a direct connection to our school district besides being a taxpayer. We were either graduates of the district or parents of students either currently in school or graduated. Our greatest quality amongst ourselves, we could communicate with each other, and respected each other. Better yet, spoiler alert, after all was said and done, we became great friends.

We came up with a campaign slogan and theme, from the least likeliest source, and least qualified, me. We were taking a step like none others to change this school board. We were taxpayers who wanted accountability, but we also had responsibility to the children to do what was best for them. And the current situation was not accomplishing that. Things were not progressing as they needed. And that is how I came up with “1st STEP – Students and Taxpayers Expect Progress.” And while as the least qualified on this slate, I was shocked, by group consensus, this was how our campaign would begin.

At this point, I still felt pure, in that my effort had nothing to do with politics, which I was fine with. My running mates were all registered Democrats, so I left the political crap up to them. I was focused on my targets, the bullies sitting on the board. I was not going to lose sight. And then this happened.

Our campaign had started to get the attention from the incumbents. This photo is the front side of a political mailer sent out attacking us. To be clear, I have had disagreements with people in my life, but never on this level, and by complete strangers no less. The intent was to imply that myself and my running mates and I had the support of the teachers, who clearly had been abused by the current board. This would come in the form of an “endorsement.” But the bigger issue, was the optics of this political piece, meant to shock the community. Oh, it shocked the community alright. Using a photo, depicting violence, involving a school body, sent outrage of inappropriateness across the country. That’s right. The local news picked up on this, and the bumbling interviews they did with the incumbents running for re-election showed their plan had backfired, badly. Though, they still stood by their effort.

This was the catalyst that finally brought a movement of change and decency to our school board. Unfortunately, all five of us had lost our bid for school board, but collectively with less than 500 votes, three of us losing by less than 200 votes. We had gotten the attention of the voters in the district.

We would take one more shot two years later, with our relentless efforts to expose what we thought was wrong with the district operations, and what we could do to improve them. Two of our candidates won their seats that year, with a third, just barely losing, again by a small margin of votes, that all it would have taken were some people to think their vote would have counted, it would have. She would run again, and this time not only make it on to the board, but become board president. In fact, the entire board has changed over.

I have since bowed out of politics all together. Though, with students still attending school in the district, I feel I still had a right to express my concerns, and when needed, speak up in defense of our school board. With the boorish behavior of so many attending school board meetings speaking up during public commentary, as was typical, those who felt the board was doing right, either did not attend, or did not feel the need to speak up. Most figured that these negative speakers were doing themselves their own disservice, and nothing further needed to be said. To a degree, that was true. But just as I got involved back in 2009 when my daughter started school, I was not standing for this abuse in my daughter’s senior year.

I do not envy my fellow campaign members, in their roles of volunteerism, that’s right, their position on school board, subject to all kinds of verbal harassment and abuse, was volunteer. Two have since passed away, and one is currently a local judge. I still keep in touch with those who are still with us, and consider them friends. Wherever they all end up, I will always say proudly, I knew them when they started their ride.

But now, it is time that I close this chapter for me. And it was a fun ride.

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