Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

It Is What It Is


The numbers of Covid19 cases and deaths are shocking.  We having some falsely compare Covid19 to the flu, to now national tragedies such as 9/11 and the Vietnam War.  Eventually, more events will get combined into those descriptions such as the Oklahoma City bombing and the Korean War.  Numbers of deceased from all of our 20th century historical events combined to be compared to this virus is not only tragic, but an embarrassment.

Nobody gets any pleasure dealing with negative statistics.  But it does absolutely no good, to “bury your head in the sand,” pretending that something is not happening, in spite of the overwhelming numbers that we are facing.

What does not help, is the relentless attack that is perceived by some on certain political leaders.  While not to blame for the virus itself, decisions made, or not made, do get tied directly to the politician who decides them, good or bad.  And there will be plenty of time for arm-chair quarterbacking who should have done what and when once, ONCE this is actually under control.  And there will have to be answers.

The biggest distraction or shiny object however, seems to be wanting to “lessen the blow” of the actual virus and death counts, so that it does not seem so bad.  What has not helped thus far, besides the many trolls putting out false information, is the lack of information in the beginning when action needed to be taken, but now, and mistakes in actual documentation of the virus.  Of course mistakes happen.  But now those mistakes are seen as an opportunity to present, approve, and convince misinformation.  How else better can you get than to make the numbers lower to prove something not as bad is it may be.

In the state of Pennsyvlania, it was reported a 200 person count difference in recordings of Covid19 deaths.  No detailed explanation was given, and it most certainly did not take away the fact that hundreds at the time did in fact die from the virus.  But the problem of whatever that error caused, has understandably given right to question the accuracy.

But in Florida, a different situation has occurred.  As local governments have taken action to restore activities in their communities, it has been discovered things are not as they seem to be.  According to CDC guidelines, and phased opening recommendations by the President Of The United States, certain criteria needs to be met in order to restore business eventually to “as usual.”  What happens if you do not meet that criteria, but are facing all kinds of pressure to “re open” anyway at any cost?

It seems that the Tampa Bay Times have discovered at least one answer to that. question.

Early in April, the TBT had tried to obtain information on cases of Covid19 in regard to staff and residents living in long-term care facilities, of course one of the higher risks concerns.  The information is normally submitted by the agency themselves, to the Agency of Health of Florida.  At the critical object of this information, the ability of loved ones to be able to tell if their family member was in a facility facing a Covid19 outrbreak.  The state refused to produce the names of any facility citing privacy concerns.  No names of residents are staff were being exposed, so what was the privacy concern?  That information could have been used by families to remove their loved one before exposure.

In any case, the state was sued on the grounds of violating the 1st Amendment in regard to freedom of the press and free speech, and the names of the facilities and the numbers were released.  That should have been the end of this kind of behavior.  The state got caught suppressing information.  And then something else happened.

During a press conference later on, April 13th, Florida Surgeon General Scott Rivkees was abruptly removed from Governor Ron DeSantis’ cabinet meeting after making the comment that social distancing, one of the main pillars of the CDC guidelines to prevent the spread of Covid19, would be necessary until a vaccine was created.  Hardly what a tourist-driven state wants to hear.  Clearly an effort of silencing, and minimizing what was happening in Florida was underway so as to help make it possible to appear ready to return back to normal.  An impossible task if it still looks like Covid19 is still on the rise.

The reality is, Covid19 is still on the rise in Florida.  The problem is now, we cannot prove it.  It can be proven that the information cannot be obtained.  The Tampa Bay Times has just reported on this issue.

Florida has stopped releasing statistics from the medical coroners which include Covid19 death information.  Numbers have not been released in over a week.  Sure, we have all seen the numbers rise in Florida.  It is documented.  But it does not include the numbers released by the coroner’s offices.  This means that the death toll in Florida has the potential of being 10% higher than is being reported by the Florida Department of Health.  The information states where the deceased is from, diagnosis of death and some other information, but not the name.  So, for officials to claim it is a privacy issue after decades of the coroner’s offices operating this way, suddenly no longer doing so because of the Covid19 crisis, is bullshit.

At issue it is believed, a distinction between residency.  In other words, well known for an inflated “snow bird” population, seniors who spend long periods of time over the winter months in the sunshine state, should not be included in the death toll if they die from the virus, because, technically, they are not Florida residents.  Therefore, their death should not count for Florida.

Think about that for a moment.  The whole purpose of a count like a death count, or virus caseload, is to be able to tell how severe an area is dealing with an outbreak.  But Florida wants to only publish the deaths of residents only which of course from a public relations standpoint, makes Florida much healthier and safer than it really is.

But is an estimated death count 10% higher than stated, a couple of hundred deaths that big of a deal?  Absolutely.  If deaths are still climbing at a rate higher than recommended by the CDC, then the state should not proceed with restoring activities and businesses, something the governments of Florida are anxious to do.

As the saying goes, “if a tree falls in the woods, does it make a sound?”

I relate two stories to help understand how stupid, foolish, flawed, and dangerous the thinking of Florida is.

The first, a hypothetical.  A hotel on the Island of Gibip, property of another country, has 70 Americans staying in it, the rest of the occupancy, all locals.  A tragic fire engulfs the hotel, killing all of the Americans who did not get out of the building.  The headlines in the local paper state a miracle, no deaths at the hotel.  In spite of the truth that 70 people did die, but because they were not local, that fact was not stated so as not to hurt the tourist industry of that island.

Okay, that was an absurd example.  Though not really a stretch.  People died, their deaths not counted because they were not citizens.  Let me give you a real example, because it did happen.

I worked on an industrialized plant site.  My department had four buildings.  We all had our home building, but were eligible to work overtime in all buildings.  One particular evening, I was working in another building, and I was injured, pretty bad too.  An investigation would follow, as well as treatment for the injury.  OSHA would be involved since there would be lost time involved.

When I got the injury report, and was told, TOLD to sign it, I noticed a huge error.  The location of the accident was listed as my “home” building, not where the injury had occurred.  I stated the error needed to be corrected, as it was an official document, and was told “no”.  In rare unity, even my supervisor had agreed, that the injury took place in the other building, that is what needed to be recorded.  Of course, my supervisor did not want an injury ding on his record.  More importantly, legally, it should have stated where the injury took place.

Now the problem and the motive.  The building that I was working in, was steamrolling toward an impressive injury-free record, and was soon to be presented a nice reward for their effort.  Truth be told, there were likely other injuries that did not get reported.  But my injury definitely would have taken away this recognition.  They needed my injury reported in another building.  Regardless that the equipment involved did not even exist in my building.

Of course there was scorn by my fellow workers from the other building for daring to screw with their record and reward.  It was my fault for getting hurt, not theirs.  In the end, I lost.  The injury was falsely recorded in my “home” building where it did not occur.  And thirty employees got a recognition for their injury-free record.  That is what mattered.

That was a true story.  And it definitely emphasizes the importance of recording information and why it matters.  No one wants this pandemic over more than me.  But hiding and ignoring facts does not make the virus go away.  Only truth and actions.  And our country has been making a difference.  Okay, not fast enough for some, but it has been working.

Florida decided to restore some activities, and soon others will follow.  In spite of our numbers climbing, and numbers being hidden.  The truth will come out eventually, either by lawsuit, or by history.  But by then it may be too late.

The Best Source For Covid19 Info


I have on several occasions during this pandemic, the fact that I am considered “high risk,” meaning that I have a higher chance of not only contracting the virus, and possibly dying because of it.  Worse, my susceptibility, especially during the incubation period, or “ability to spread” is likely to have more of an impact on those around me.  So yes, I definitely take as many if not all of the precautions necessary so that I do not come down with Covid19.  Many would consider that courteous.  Most would call that smart.

But when it comes to advocating for others, regardless if they are high risk like me, or of average health, there are some who do not describe my efforts as courteous or smart.  They call it “fear mongering.”  The Google definition, similar to every other source, of “fear mongering” is “the action of deliberately arousing public fear or alarm about a particular issue.”  In order to do this, there has to be an agenda.

All of these raise a public concern about a legitimate concern, a fire in the home, a car accident, someone breaking into a home, and a pandemic.  All serve a deliberate purpose, to protect you, not to cause fear, ALL OF THEM.  Having a smoke alarm does not mean your house will catch fire, wearing your seat belt does not mean you will be in a car crash, and using a home security system does not mean your house will get broken into.  Neither does awareness of the number of incidents of cases of Covid19 and their deaths.  All of these things are meant to bring awareness to a very serious concern.  That is not fear mongering.

Now of course, I immediately get called out, making accusations about using certain sources, and being “left leaning,” as to infer a political lean that I do not have.  I am a registered non-party.  I have no lean.  Being a college educated individual, and one of the first things I learned writing term papers even back in high school, you need a variety of resources.  As a rule, I stay away from any that is definitely right or left wing biased.  But when I rely on media information, I take everything in, and then form my opinion.  Just because my though may agree with you, does not mean I agree with your party.  Just because my thought may disagree with your ideals, does not mean I have an agenda.

For the most part, I have something much more reliable than media sources.  Yes, they may give me ideas, but then it is up to me to research.  Before any government official, I will always trust my doctors and scientists.  Several of them, belong to very prestigious  and well-known and reputable medical facilities.  The doctors that I deal with, are the best as far as I am concerned.  And it is not just their skills that earn them that description, but who they are.

An older picture, but this is one of those doctors that I rely on for information.  He is the most knowing of the many health issues I have due to my treatments for Hodgkin’s Lymphoma.  This has been his life for decades.  But now, in the days of Covid19, he is taking on an even more critical role, helping me, and others like me, from having to deal with the virus, or what to do if unfortunately we do contract the virus.

Arranged by Hodgkin’s International, an organization created and run by survivor’s of Hodgkin’s Lymphoma, my doctor participated in a webinar yesterday, at no charge, to speak to, and to answer questions from not just some of us who were patients of his at one time or another, but all participants in the chat.  Let me say this again, he took his own time, to talk to us, and answer questions about how to get through this crisis.

My doctor is a strong believer in the CDC, and carries many other high credentials and ties to major medical organizations and facilities.  Because there were so many of us on this call, he was sent the questions via chat, which actually kept things very organized, and time was not wasted trying to get everyone to be quiet and not talk at once.

You knew right from the beginning, his audience, us, already knew the importance of protecting ourselves not just during this crisis, but with any potential illness.  He mentioned the need, for us to do what we already do as long term survivors, “listen to your body”.  Many survivors already run low grade fevers as it is.  But if we definitely do not feel right, we need to act.  And not just act, we must advocate.

The good doctor knows the many struggles many of us face in getting the average medical personnel to listen to our histories and respond appropriately.  Part of his care, is getting his patients to educate themselves, and then, to advocate for themselves.  Just as importantly, if possible, have someone with you to advocate along with you such as a family member or significant other.

He went on to explain the situations that lead to us being high risk, not that we needed proof, but coming directly from him, it is a validation that we know the truth, we know what we are talking about.  He started out talking about radiation therapy exposure to the chest area (lungs and heart).  Then he mentioned the drug Adriamyacin, some of us refer to it as the “red devil” because of its color and deadly side effects, (heart), another chemotherapy drug called Bleomyacin (lungs), and of course the spleen being removed (immunity).  He also mentioned the importance of blood pressure control.  I do not know about the others on that call, but I check off all five of those boxes (along with being diabetic as noted by the CDC).

And though all participants take his words as being all we need to hear, he mentions that he supports Dr. Fauci of the CDC and the recommendations that have been made.  He believes that the recommendations are not just the best for us, but for everyone.  But he strongly recommended to those of us at high risk, to continue our efforts to remain sheltered as much as possible.

There were other issues that had been discussed from returning to work, especially in an environment that may pose an increased risks, and the need to recognize patients rights under the Americans With Disability Act and Family Medical Leave.

I do not think we really ever got to discuss about potential treatments, and probably for good reason.  There is none yet approved.  His concentration was on prevention and action.  But he did answer one question on unknown, a vaccine.

Perhaps one of the most important thing for those of us who immuno-compromised, are vaccines.  All of the doctors know how resistant I am to getting any, there are times I submit, but not without major heel-skidding being dragged to them.  I am not anti-vax by any means.  But I am selective.  A conversation I once had with the doctor when he asked me why I do not get the flu vaccine (at the time never in eighteen years), he responded how lucky I would feel standing at a slot machine pulling 18 straight winners, and then going for the 19th pull.  What were my odds that I would keep winning?  He did not necessarily change my mind that day, but he has been able to convince me of the vaccines that do have the potential to prevent me from facing certain illnesses, likely to lead to death.

In our long term survivor community, vaccines are recommended, but not all of them.  One of the worst illnesses for many of my fellow survivors to deal with is Shingles.  Yes, there is a vaccine for it, but up until a year or two ago, we could not get that vaccine, because it was made with “live” virus.  That would kill us.  Recently, a new vaccine has been created with “dead” virus, and some have been given the recommendation to get that shot.  Flu vaccines are the same way.  Even when my daughters got their polio vaccines, a “live” vaccine, that actually bought me a time out from diaper duty because the virus would come out in the diaper, and I could not be exposed to that.  Other than that, I assure you, I changed plenty of diapers.

The last vaccine I faced was for “swine flu”.  But Covid19 is a completely different virus.  As of right now, there is no vaccine.  And when the doctor was asked if we should get the vaccine when made available, we got the answer we already knew.  “It depends.  It depends on whether ‘live’ or ‘dead’ media”.

After over an hour, we not only learned, we reinforced, and we also realized who we needed to rely on during this crisis, ourselves, each other, and the ones who know best.  Ourselves, fellow survivors, and the medical field and scientists.

Presidents, Governors, County Commissioners, Mayors, Economists, none of them are going to get us through this crisis, because without dealing with the science of this virus, there is nothing else left to worry about.

So that I am not perceived that I am fear mongering, our numbers are going down.  That means that the efforts and sacrifices that many of us are making, are working.  Imagine if 100% of everyone did so.  But until we actually hit zero in cases, or eradicate the virus, we have to keep on with our efforts.  I will wear my mask to protect you from me, and I will do my best to avoid situations that would prevent you from doing the things you would like to do, just because I am high risk is not your fault.  But is it really that much to ask for you to wear the mask as well?  This could have been so much worse if it were not for the efforts of so many.  It could end even quicker if we all gave a damn.  Not fear mongering, not trying to steal anyone’s freedom or liberty, just stating a fact.

Human Lives Are Not Percentages


This is when many now realize that learning algebra and other math formulas was important back in school.

Because of Covid19, and regardless of which side of the concern you are on, both want to rely on numbers.  One side relies on a percentage, the other, actual numbers.  Is it really a big deal?  Or is it more “you say ‘potayto’ and I say ‘potahto’?”

This morning I watched our local community channel as the county commissioners were discussing business to “re-opening” our area, of course, once approved by the governor.

For me, I do not pay much attention to percentages unless, UNLESS there is substantial input, a.k.a data, to have a reliable result.  Unfortunately, during this crisis, both sides want to emphasize their case, but only one is able to provide the substantial proof.

Actual numbers provided by the CDC, WHO, Johns Hopkins, etc. are reliable.  They are not identical, but close in range.  These numbers are fact.  They are documented.

Percentages at this time, are not fact.  Because facts are still being gathered.  Here is my case in point.

When the county commissioner meeting got to the public commentary, this is when things got scary.  It is hard enough listening to skewed “personal agendas” of politicians, claiming to have professional knowledge, but then you have the local population, claiming to have more.  Unfortunately, I could not grab my pen quick enough, or my phone to record her portion of her commentary, but this was the gist of her comments.

Our county has roughly 300,000 people, of course not including snowbirds.  She claimed that our county only had a percentage of .2% when it came to cases of Covid19.  That means something like roughly 500 cases for our county, which sounds about right to my memory.  That sounds fantastic!  Not even a quarter of a percent.  But the speaker did not qualify her math.  You see, factually, our area had only tested roughly 5000 cases, or in her terms, 1.75% of our county had been tested.  How can you possibly take a stat like that seriously, as opposed to an actual death count of 16 people in our county?

Just as a reminder…

Using her logic, only 1.5% of our country’s population (over 330 million) have been tested, but the actual number of human lives recorded is well over a million now.    The current death rate based only on those tested and confirmed is 5.7%, over 57,000 human lives.  Let’s not forget the important number, the recovery number.  So out of the million cases, just under 200,000 cases have been closed.  So, out of those cases, you cannot include the 800,000 unresolved because that is not “recovered” or “deceased,” approximately 140,000 have recovered, or 71%.  I assume for this example is when people would want to use the actual human number because it looks bigger and better than the average “C”grade in school of 71%.  Of course, the flip side of this number… an actual death rate of closed cases of 29%, or 57,000 human lives dead.

Okay, give these people a break, they are just looking for unicorns and rainbows to make Covid19 go away.  Alright, enough with the scary numbers for death.  If we take the death percentage of total cases, it drops the death rate to 5.7%.  Aw shit, that is still 57,000 dead.  There is just no getting around that actual number.

Why am I grinding so hard about percentages?  It actually started long before Covid19.  In 1988, when I was diagnosed with Hodgkin’s Lymphoma, I was told the cure rate was 86%, very good by cancer survival stats.  That was based on lots and lots of data.

But, there was a chemotherapy drug that I was given, that had a 5% chance of causing heart damage.  Combined with radiation damage, I made it into that 5% group.  Fortunately, the majority of my heart issues have been repairable.

Not so for one of my fellow survivors, and one of my youngest survivors.  He also fell into that 5% category.  By the time they found out however, it was too late.  The damage was irreparable.

I am prone to bend the ears of my doctors who deal with the late side effects that I must deal with, and in spite of having the technology available, that could have reduced the chances of this survivor losing his life, unlike thirty years prior for me, this technology was not used.  He died.

I asked “why would he not have been given the simple ultrasound that would have caught the damage before it had gotten too bad?”  Now, I love my doctors, and they are very empathetic with their patients, and I was not asking him as a patient, but as an advocate.  The answer?  “It is not cost effective to run that test on every Hodgkin’s patient.”  A price of an echo can range starting from $200 on up.  Not cost effective?  There are approximately 9000 new cases each year, meaning if this medicine was used to treat all 9000, which it wouldn’t be anyway because of different concerns, costs to use this technology as a preventative tool would be under a half million dollars easily.  What it actually cost to save this survivor’s life, which it failed to do?  Close to $2,000,000.  Again, explain to me the phrase “not cost effective.”

It would have been better just to say, “it is not a high enough percentage to be concerned about.”  It still happens though, no matter how low the percentage is.  He still died.  He was one of those 5% that had that extreme side effect.  He had a family.  He had a bright future ahead after having gotten to remission.

And that is why I cannot accept attempts by anyone to throw percentage numbers at me when they do not even include a majority of data to come to that estimation.  But most certainly I cannot accept percentages when they take away the recognition of a human life lost.  And by saying only .2% of a local population is no reason to be concerned, you dismiss the 57,000 lives and the families left behind.

It is time for everyone to start taking this virus seriously.

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