Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Pushing The Button Of A Health Advocate


Ironically, I was actually writing a different post about advocacy when this happened today.

Yesterday was a day that many of us were watching, a hearing involving a whistle blower complaint, pertaining to issues related to the handling of the Covid19 crisis.  Now, because my post is seriously not going to have anything to do with the hearing or politics itself, I still need to make at least some reference to it.  But as you will see, what I am discussing is not a limited type of behavior.

So during the hearing, one US Representative, Mullin, pictured on the left, resembling a cross  between Triple H of the World Wresting Entertainment (WWE) and another jacked-up angry US Senator Jim Jordan, questioned the complainant, pictured on the right, Dr. Richard Bright.  But instead of asking questions pertaining to the complaint or at the least going for a conspiracy approach of being a bitter employee or anti-president, like representatives on both sides of the aisle were doing, this Hulkablowhard went for straight character assassination.  This is the problem that I have.  And it fired up the advocate in me, because what happened was just plain wrong.  And it has nothing to do with politics.  Mullin was nothing less than a monstrous asshole for the way that he displayed himself.

In going after Dr. Bright, he began questioning his current work status, then his payroll status, then his health status.  What did this have to do with Dr. Bright’s whistle blower complaint?  Absolutely nothing.  It was a straight up attempt to assassinate the character of someone.

What position was the doctor currently in?  What is his current attendance status?  Questioning the transition of sick time to vacation time?  The doctor’s payroll status?  Health issues of the doctor?  And then the biggest insult, and one that should forever label Mullin as the ultimate scum, implying the doctor’s health was too ill to get to work, but not to testify before Congress.  Not one question about the actual complaint or anything about the current crisis and any role the doctor may have had.

It is clear what Mullin was trying to do.  I have seen it many times over my years as an advocate.  Pain in the ass does something wrong, gets punished, but does not cower like a beaten dog in remorse, resulting in an even stiffer penalty.  Employee defends himself, perfectly as the employee has done nothing wrong other than to draw the ire of a superior who wants things done differently.  Then the attacks become more about the individual, and not the work history, or even the incident itself.  We have all likely been there.  And we cannot help but want to stand up and cheer on the victim of this bullying.

Years ago, I was a union shop steward for a major company.  For those unfamiliar, the shop steward is representative for the union member, somewhat like a lawyer, there to defend the employee with a bargaining unit contract, regardless of the infraction.  How hard are supervisors driven to “get” employees?  It all depends on how much you have irritated that supervisor.  A friend and former co-worker used to describe me as “an asshole.”  But followed it up with this comment, “but you know what?  You are a stand-up guy.  You stand by what you say, and you support everyone equally whether you get along with them or not.  You do your job as a steward and no one can ever question that.”

One incident involved a co-worker who was out sick.  Having only one car, and needing to go to the doctor later in the day, she dropped off her husband at work, then dropped her children off at school.  But, instead of going straight home, get this, you might want to sit down for this, she pulled into a Dunkin Donuts to get a cup of coffee.  She was spotted by one of our supervisors.  I felt we should have notified Graterford Prison to alert them of a new inmate coming for the crime that had just been committed.  Management did not appreciate my cavalier attitude any more than I appreciated wasting my time having to defend someone who claimed to be sick, and being sick, should have not been drinking coffee.

Another incident involved another co-worker, that I had represented through the various grievance steps, only to be removed, um… deterred by supervision and made unavailable to attend the final grievance meeting, leaving someone else to attend in my place.  I had been successful up to that point in protecting the employee, and clearly, management was really intent on making an example, and not at their expense.  I made the decision that I would use personal time, that I could not be denied, and then attend that meeting after all.  At the door, I was denied entry, stating that I was not on company time, therefore ineligible to attend.  After a lengthy protest, company and union officials went back inside to discuss the situation that I had presented in my insistence.  Ironically, or strategically, this went on for over an hour.  The attempt was to get me to spend and waste the personal time that I had taken, now expiring.  Obviously underestimating my morals, I requested additional personal time, clearly willing to spend it all if I had to, to defend this employee, which now clearly, I knew, a fight I was winning.

Personally speaking, following my open heart surgery back in 2008, after spending a week in the hospital, I was sent home under strict recovery orders.  One of which, was to make sure that I took some walks, not faced paced, but just for the point of keeping my body moving, not to mention that getting outside, would help keep my spirits up.  During that first week, I probably did not walk more than a hundred yards, but it was a long a busy street, a street that many of my co-workers traveled to get to work.  Yep, you guessed it.  My phone began to ring from both ally co-workers, and one supervisor who looked out for me.  I was being warned that I “look great” after being spotted walking and that “there was no reason he should not be back at work.”

Now, forget the fact that less than ten days prior, I had my breast bone cracked open and a major heart surgery performed on the heart.  Anyone who has ever suffered a broken bone, know, bones do not heal overnight, usually requiring a cast, which clearly they cannot put on a person who has had heart surgery.  But evidently, all of these passersby had enough medical knowledge, and about me, to determine my work status.  Of course, that set off a whole other set of challenges, as my doctor had ordered me out of work for six months to allow the bone to heal, compromised by the very thing that caused the need for the surgery in the first place, radiation damage would hinder control.  I now had my employer insisting on their own surveillance of my recovery which they insisted on my doctors seeing me weekly, though my doctors stated they had only intended to follow me up in three month periods.  Definitely a waste of my cardiologist’s time that he could have been seeing other patients, my status never changed, and I would still remain out for the recovery plan as prescribed by my doctor.

So of course, when I saw this jackass from Oklahoma attack, and that was what it was, attack Dr. Bright, my advocate bat signal went full blast.  But of course he has a team of people looking out for him.  Clearly Mullin violated Dr. Bright’s HIPPA rights, not necessarily as the doctor, but in continuing to express Dr. Bright’s personal health publicly.  And he should face repercussions for that.  It should also be noted, Mullin is not a doctor, but a plumber.  Yet Mullin felt qualified to interpret and explain the impact of hypertension, even if spontaneous and the dangers posed when not managed.

We are dealing with a very serious crisis right now.  And dealing with anything other than science and facts is only adding to the complications and wasting time bringing an end to this pandemic.  What Mullin did was a travesty and embarrassment to himself, our government, and the people of Oklahoma.

A Typical Day Today


The easiest way to get through these difficult times, is to keep some sort of routine.  We all have different needs and circumstances for sure.  But as I have often explained before, from personal experience, my chemo battle, you can get through the toughest times of your life, if you take them one day at a time.  Concentrate your energies on that day only.  And if it works for you, make that your routine.  Because the next day, you can look back and say “this worked yesterday, I can make it work today.”  Some would call this “groundhog day thinking.”  Maybe so, but it works.

Knowing I am high risk, I have kept to myself to not only protect myself from my vulnerabilities, but also so that I do not have any impact on anyone else, especially any health care workers.  Their work load is heavy enough without me being another patient for them.

My days are static, routine, not really any fluctuation other than longevity of each activity.

After my morning walk, I spend my time with “to do’s”.  I had been talking about writing a book based on my experience as a cancer patient and survivor, much like I do here on the blog.  The good news, this crisis has finally convinced me that I had the time.  And I am fifteen chapters into this “survival guide” I am nicknaming it.  A couple notable things while doing this project, which I have no idea that I will even finish it, but can I even get it printed.  My goal is just to finish it.  The first thing that has my attention, the details that are still in my mind, fresh as the day that they happened over thirty years ago.  I remember everything, including conversations, word for word.  The second thing, I have been alive to see actual progress in the diagnostics and treatments of Hodgkin’s Lymphoma.  With that came the disappointment and realization of the fact that very little was known about what my body was being put through as far as treatment when it came to long term survival.  I was a guinea pig.

Anyway, staying focused on this being a fun post.  Along with the book project, I am also always working on posts for “Paul’s Heart.”  Both of these I am doing on an old laptop.

Yep, my laptop is almost twenty years old.  A technical issue resulted in an upload upgrade to Windows 8.1, but the operating system is old.  But like everything else I have, I take really good care of my things.  Vinyl records… never a scratch.  Original Nintendo game cartridges, never had to “dust” off any contacts.  My laptop?  I protected it in its case, kept viruses at bay.  In fact, I sill have all the information stickers on the laptop.

One way that I have preserved it so long, is I go through it, looking for things that I can delete or consolidate.  I have not really made a lot of ground on either effort.  But what I have done, has been way more fun.

Do not underestimate the power and the value of reliving your past.  I literally have thousands of photos saved in my laptop.  Places I have been to, things that I have done.  More importantly, so very precious moments with my daughters.  Struggling with the daily repetitive grind of this crisis?  I simply go through album after album of these memories.  There are so many, and I know that I have not seen them all.

Besides a daily walk, with my health concerns with this virus, I do what I can to keep my lungs in the best condition that I can, in spite of their condition.  I could just use the spirometer daily, but as anyone who has ever had to use one, they hate it and using it is boring.  So, a more fun way to exercise my lungs, ask Alexia to play some music.  Because of the reduced capacity of my lungs, I no longer have the technique that I once did.  By the end of the song, I usually end up winded.  But I have accomplished what I wanted, expanding my lungs and keeping them flexible.

I have also been paying attention to what others have been “binging” on Netflix and Amazon.  While my back will not allow me to watch more than two episodes at a time, I have completed Ozark the 3rd season, Hunters, Upload, and of course, Tiger King.  Newsflash, there is going to be a 9th episode (the 8th episode was an after filming episode filmed via social distancing methods).

But the highlight of my day is in the evening.  Getting to talk with my daughters.

Initially reliant as communication between scheduled visits, as we wait for the time that it is safe not only for my daughters, but for me to travel with my health issues, Facetime, Zoom, and House Party allow me to still share our daily experiences.

And that for the most part is how I fill my day, day after day.

Like everyone, I am hoping that this crisis ends soon.  I do not know when it will end.  But in the meantime, I am doing my part not to spread or get infected.  I do not get involved with the whole “forced to do it” movement.  I do it because it is the right thing to do.

Being Cautious


In the beginning of March, I reached out to the doctor that deals with my long term cancer issues.  I explained to him, that I was concerned about the Coronavirus outbreak, but my heart was set on travelling to see my daughters, one who was about to celebrate her birthday.

I knew I was high risk because of the different factors I have been exposed to over my life, but I also knew how to protect myself around contagions as that was once a job I had in my past.

Of course I had concerns for my children as this outbreak commenced.  Initial reports were that the virus did not have much of an impact on kids, other than at worst a “mild” reaction.  The bigger risk would be that they could be a carrier of the virus, which would of course put me at risk as well if they were unaware if they had Covid19 or not.

I was confident of what I needed to do.  But I still asked my doctor what else could I possibly do to keep myself safe on this trip.  Of course I got the usual “wash hands frequently”, wear a mask, avoid contact as much as possible.  It was the last thing on his list that caught me off guard.  “Make sure you wash your clothes first chance you can.”

Of course, that made sense.  Because the virus could spread with coughs and sneezes, and was able to live on surfaces for up to two days, that would mean the germs could live on any clothing exposed.

Think about it, how many times have you gotten sick, and wondered how?  You did all the proper hygiene stuff like washing hands or hand sanitizer, cough into the crook of your elbow, and avoided contact or sharing things.  But you still got sick.  Because when you got home, you did not get out of the clothing that you were wearing, which probably had been sneezed on or coughed on by someone, and you had not realized it.  And throughout the rest of the evening at home, you thought nothing of it.   You went about your business, which includes touching your face up to twenty times and hour with the hands that have touched your clothes probably just as often.

My doctor’s advice was perfect.  And honestly, for all the viruses every year, I have managed to avoid all of them.  And that is my plan.

Of course now, with businesses in the process of resuming operations again, a thought occurred to me.  We will all assume that restaurants will do their part to keep their facilities and staff as free from the virus as they can.  But what about other businesses?  Car part stores.  Book stores.  Clothing Stores.  The list goes on.  It is up to the business to make sure that everything is kept sanitized and that customers abide by recommendations.

But here is one thought to leave you with.  Male or female, if you go shopping for clothing, do you try clothing on at the store?  We have been told that the bacteria can last for days, so how do you know if the clothing you are trying on, or buying, has not been worn by someone asymptomatic for the virus?  Thereby exposing yourself to the virus.  Or, for the business owner, what do you do with clothing that has been tried on, not knowing if the customer had the virus?

This is all new territory for all of us and we are all learning as we go along.  I am not saying you should stay home, but there are things you need to think about, and most importantly, be cautious about.

Post Navigation