Paul's Heart

Life As A Dad, And A Survivor

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.

Guest Thoughts On A Survivor


A little over a couple of weeks ago, I wrote a tribute for a fellow long term survivor of Hodgkin’s Lymphoma who had passed away, following a stay in the hospital due to an injury.

I had received so many comments about Kimbra’s passing, that I wanted to share some of those comments.  You see, when I write about a fellow survivor, it is simply from my perspective.  I do not think for one moment ever that I am the only survivor that someone has touched, because as I struggle with my own emotions in the passing, I often do not get to appreciate the beautiful words, even more so, the beautiful ways that someone has had an impact on someone else.  It was really overwhelming to see all of the warm words offered for our fellow survivor Kimbra.

I have been at this a long time, over thirty years.  And the longer I am in this, the more survivors I get to meet and learn about.  And just when you think you know them, at least within our group, that we all rely on each other, we learn there is just so much more than we thought we knew.  With that, I would like to share with you, some of the words of consolation, grief, and inspiration shared with me for Kimbra, from the words of her fellow survivors.

Susan

Yesterday another friend who is also a Hodgkin survivor diagnosed prior to age 18 died unexpectedly. Kimbra was kind, loving, helpful to others, and after a career as a medical librarian, was a wealth of knowledge to our group. In honor of Kimbra’s life, I share this personal essay I wrote that was published three weeks ago in the Journal of American College of Cardiology (JACC). Here’s an excerpt: “Two important mentors from the online Hodgkin group have given me hope in spite of an uncertain future. Dave (from Australia) and Dolly (from Texas) taught me how to face death: to speak of it openly, and to love with an open heart. They each wrote of savoring life moment by moment, and each lived fully and courageously to the end of their lives. From them I learned that someday we will die, but on all the other days, we will not. The key is to keep that balance in perspective. They showed me that among the collateral damage there is a certain collateral beauty: although we may not be cured, we can be healed.” Kimbra’s friendship is one of those collateral beauties.

(I am posting the actual link to the JACC story that Susan wrote)

https://cardiooncology.onlinejacc.org/content/2/1/149?fbclid=IwAR0fkfuUC2THdpWm7YJwKW3AuqwUOoBP4NSKJND0cpGoYI22KTTIX-cu-2Q

Cathy

I’ll miss her spirit here in our groups she helped us all with kind encouragement and vast knowledge. I’ll miss our late night chats.

Lori

Rest easy now, my sister in Hodgkins….you fought the good fight and your words/deeds will be defined by your life, not by what happened to you.

Kathy

We were all touched by her beautiful soul. The giver of knowledge and the seeker of light. May all who loved her especially family and friends remember the special gift bestowed on each of you…she survived and will always be a survivor in our hearts and souls.

Hope

She was a true friend to many.

Sarah

I’ve met survivors in all sorts of settings over the years. Yet, none have I ever become so close with so quickly as Kimbra. We had several long late night chats early on after we connected in another HL survivor Facebook group. I learned so much about HL survivorship from her and always appreciated her humor, love of literature and caring and helpful attitude. I am lucky to have gotten to know her. I will miss her and clearly she will be missed by others she knew in-person and online.

There are so many more.  But you get the idea.  On our support pages, our numbers are in the hundreds.  And while many many not write, just read, each and every one has an impact on us at one point or another.  It is an even bigger blessing if that impact was personal.

Kimbra is now among so many that I have had to say goodbye to over the years.  It does not get any easier.  And in a way that I think Kimbra would want, as others before her, our emotional reliance on each other only gets stronger as does the bonds between us.  Whether we offer words of encouragement to each other, or have an experience that might give a potential direction to deal with one of our unusual health situations, it is survivors like Kimbra that keep us going.

Cutting Corners And Fast Tracks


When you think of the phrase “cut corners,” you will normally think of ways to either save time or save money.  And depending on what you are trying to to “cut corners”‘ on, it can be either a good thing, or a bad thing, especially if someone gets caught.  In meeting a household budget, one might decide to do one less night out, or perhaps buy one less treat on the trip to the grocery store.  Driving in rush hour traffic, or late for an appointment, it only makes sense to make a different turn than originally planned, or worse, against the recommendations of your GPS, to either save time or distance.

We are an society that loves instant gratification.  We hate to wait for things.  Disney was one of the first pioneers to come up with an organized method to speed things up, or at least make you think you have saved time, the “Fast Pass.”  Think back to elementary school, while waiting in line, and then having to go to the bathroom, we would ask the person either behind us or in front of us, to “hold my spot.”  That is the Disney “Fast Pass.”  You check in for a ride that traditionally has a long line, like hours long, and it gives you a time to come back later, bypassing the line, allowing you to enjoy other attractions at the park.  And as long as you do not mind just walking to all of the attractions you would like to ride, check-in, then return later in the day, this will work out for you.  When it is your turn, you get to go right to the front of the line, without having to wait in a line, like the rest of the other parkgoers.

There are times when cutting corners are a good thing, and when saving time is a benefit.   To expect these attitudes however to apply in all parts of life, is not only unreasonable, but dangerous.

I used to work in an industry  that is heavily regulated.  And for good reason.  It affected people’s lives.  On a daily basis, corners would be cut from allowing proper time to complete a task, training a co-worker properly, to diluting chemicals.  Now probably in many cases, it may not have been a big deal.  In others, contamination risks, more importantly, potency and accuracy may make a difference.

We, my co-workers, were expected to do whatever we needed to do, to complete our daily work assignments.  Often times that meant cutting corners in time and materials.  At times, management even forced these situations when it would come to “time points,” to avoid paying overtime, shifting time points into regular working hours.  Now for those who do not understand that importance, think about a dosage and how often you take a medicine.  How do you think, those intervals came about?  How would you feel if you found out, that occasionally the testing behind those products was not spot on, just for convenience?  You can now see how cutting corners can easily be a bad thing as well.

I was notorious for being a pain-in-the-ass, for refusing to cut corners.  Besides the fact that I did not think it was the right thing to do, my signature went on every document of every task that I completed, and I knew that if something went wrong, it would get thrown back at me.  And I could plead all that I wanted, “management made me do it.”  Who would inspectors take the word of more, a supervisor or a peon employee?  Deep inside, I knew I was doing the right thing, although my peers and management felt differently.  I often found myself not getting certain assignments because daily, it was all about quantity of work getting done, not quality.  But my acknowledgement would come at inspection times.

When inspectors would come onto plant site, that is when I got tasks that I knew were important to the company, and that they were needed to be done correctly and thoroughly.  And with the majority of my other co-workers routinely doing this via “short-cut”, they may not have remembered all the things that needed to be done, or correctly.  All you have to do is look at your local food inspection reports.  If you do not want bad attention, you put your best people on to make up, or cover up what you have been doing.

For me, when I worked, there were no corners to cut.  I was not interested in getting things done the fastest.  And I am thankful that for every nurse, doctor, and tech that has taken care of me, especially over the last three decades, hopefully were not corner-cutters as well.  I count on them to have all the skills necessary to treat the needs that I have.

Today, we are dealing with our worst health crisis, at least in my life-time, and I want to say that I hope that I never see another one.  Over the last fifteen or so years, viruses and outbreaks have become very common.  And we have always been able to respond quickly and with hopefully the least amount of casualties.  But this time is different, there is no cure, there is no vaccine.  We are simply relying on people to willingly do the right thing.  And it is not much that is being asked.  Wash our hands, and social distance, six feet apart.

But, just as co-workers can interfere with a process of prevention or development, we in the public sector are no different.  We have the right people in place for the most part, the scientists doing the research, giving the recommendations.  And the majority of the people are doing their part listening to, and following the recommendations.  Then there are those who feel that their individual freedoms are being challenged, in spite of it being for their safety, for our safety, they will not be told what to do.  Instead, they also challenge the powers to be, to cut corners, and to go around protocols to find treatments and vaccines faster, so that they do not have to be inconvenienced, or lose their freedom.

It is only a select amount of people who feel this freedom is being violated.  And the scientists cannot allow their concentrations to be distracted or diverted from their cause, finding a cure and a vaccine.

We have tons of medicines available to us.  And it is only natural to find multiple uses for them.  In fact, Big Pharm has found these new uses as a way to hang on to a patent to maintain their profit margin.  By the same token, accidental discoveries have also allowed doctors to make “off label” recommendations to help patients be able to afford medicines that might just help their malady.  One example that has led to other uses, sleep drugs being discovered also to benefit for use as a diet drug.

Or one that I personally became aware of years ago, the allergy drug, Claritin.  Only a few years ago did I learn that this drug had the ability to treat certain bone pain associated with neupogen shots for those going through cancer.  These particular shots would accelerate white cell growth, which of course occur in the bones, causing the familiar “growing pains” some of us may have experienced in our youth.  The thing is, this pain does not respond to normal pain meds, nor does it seem to respond to other antihistamines.  A regimen now is often recommended, off-label, of Claritin for this bone pain when going through chemotherapy.

So, why not just have the FDA approve Claritin for that purpose.  Because, we have a process.  It has not been scientifically and officially gone through the processes to be approved.  The cynic in me also tells me that there is not likely to be any kind of official designation, because there will not be any real profit for an over-the-counter medicine.  But, doctors who are aware of this option, will definitely recommend it, and unofficially, I can tell you, out of every cancer patient that has ever mentioned this to me, including my late father, Claritin has done just that.

The frustrating thing for everyone then, during this pandemic, is that we thought there might just have been a drug that is currently used for another purpose, that might help treat Covid19.  Just like Claritin, there was success with some patients that this drug had not just shown promise, but gave hope.  But unlike Claritin, the discovery of this particular drug, used for Lupus and rheumatoid arthritis, and the deadliness of the virus, caused an unprecedented hoarding of that drug, taking away availability to the patients that need that proven treatment for their quality of life.

Like I said, there is not a lot of time with this virus to find a cure or vaccine.  It was only natural to want to push this discovery, but it still needed to be done.  To determine if this drug could actually treat and cure Covid19, it would need to be studied just like every other medication.  But that will take time.

Sadly, because that time has not been taken, scientists have now discovered that the drug, taken in higher dosages, can be fatal, caused by cardiac issues.  These are issues that come up in studies.  There is a reason that we cannot just throw a pile of shit at a wall and see what sticks and say, “THAT’S IT!”.  There are no corners that can be cut.  There is not fast way to get there.

All we can do at this time, while we wait, is follow the advice that we have been given, because for the most part, those of us that have done our part, the statistics are nowhere near what they could have been.  But imagine if everyone had followed the advice instead of feeling their freedoms being threatened.  We could have been done with it by now.

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