Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

15 Mar 2020

Did You Just Call Me “Weak”?


One of my favorite movies, is “An Officer And A Gentleman,” starring Richard Gere and Louis Gossett, Jr.  A scene early in the movie has a recruit (Gere) in line with other recruits.  The drill sergeant (yes, I spelled that correctly), played by Gossett, Jr., proceeds down the line of the recruits, stops at Gere and asks where he is from.  Gere responds, “Texas.”  Gossett, Jr. returns, “only two things come out of Texas, steers and queers.  I don’t see no horns on you, so you must be queer.”

So, this is a weird way for me to start a post.  But I do so as an analogy.  The other day, I responded to another’s post about the current Corona virus pandemic.  The individual wrote, “80% of the people won’t even be affected by this, only the old and the weak.”  You can see why I began the way that I did.  Clearly Gere did not have horns on him, but that also did not give the drill instructor the right to insinuate and insult Gere’s character with a homophobic slur.  Later in the movie, Gere would most certainly prove Gossett, Jr. wrong.

I am 54 years of age.  By any definition, that in no way makes me old.  So, as many times as I have had to defend myself during this virus crisis, I am definitely considered high risk.  But that is not what the ignoramus wrote.  He said, “old or weak.”  And if I am not old, then I must be “weak.”  I pride myself in not letting comments made about me, bother me.  And as I mentioned in previous posts, I have issues, survivor guilt, in accepting my longevity.

But this snarky comment, “old or weak” lit a fire under my ass that I have never felt before.  I know what I have gone through over the past 30 years was no easy task.  I have never looked for an “attaboy” or a pat on the back for what I have been through.  I most certainly do not brag or complain.  This moment was different, my tongue, or in this case, my fingers, would not hold back.

My reply:

“Weak?  Seriously?  You are calling me weak?  Because I’m certainly not old.  I know you are clearly inconvenienced along with the 80% you made reference to.  But you do not get to call me weak.  I have dealt with cancer.  I was exposed to several toxic chemicals as part of my chemotherapy.  I was exposed to four times the lifetime maximum of ionized radiation.  I have had operations on the two main arteries to my heart because of my treatments.  I have permanent damage to my left lung from my treatments.  I was rolled out of my house at 4am on a gurney into an ambulance, dying from septic pneumonia.  Nine months later, I had another episode of that pneumonia.  I have no spleen (thanks to my cancer) which makes me more susceptible to illnesses.  There is more, but you get the gist.  I have a much higher risk of contracting Corona virus, or perhaps another term that might be used, more vulnerable.  But “weak?”  This is not the animal kingdom and survival of the fittest.  If I succumbed to the virus, to you, I would be no different than the 20% of the weakest part of the herd.  FUCK YOU!”

Okay.  He definitely struck a nerve with me.  Perhaps I was being a bit sensitive, or was I?  Clearly he was not a writer, or he would have thought more carefully about the words he was using.  Or perhaps his thinking was that simple as “survival of the fittest.”

For being as high risk as I am, and honestly, I can only claim that for twelve years of my thirty, because it was not until my first heart surgery in 2008, that I learned that I had all these factors determining my risks.

After the berating I gave, I decided on a second reply, not simply “editing” my previous reply.

“I have gone through annual virus outbreaks such as SARS, bird flu, swine flu, Zika, MERS, and of course, the annual flu outbreaks.  I worked with biological hazards as part of my employment, much to the displeasure of my doctors who felt I should not expose myself to those risks.  And yet, after all this, to this date, I have not developed anything, in spite of my being high risk, vulnerable.  Why is that?  Because I know my risks.  I know the procedures and the things I must do to minimize any chance of exposure.  And guess what?  That does not involve anyone else, other than myself.  That’s right, I don’t put that responsibility on anyone else, other than myself.  Dealing with this Corona virus, my attitude is no different.  But even my daughters understand this simple concept.  It is those around me that I have no control over, that can affect my risk.  I am talking about vectors.  You probably have no idea what I am referring to, so I will simplify it for you.  A vector is a carrier.  And that, is what 80% of you have the potential of being to the 20%.  You will either have slight flu symptoms, or just carry the virus, and interact with someone whose body cannot fight off the virus.”

That’s right.  No matter the many precautions that I take, my main threat is going to be the “strong” people, who carry the virus.  I have made my most difficult decisions to reduce my exposure to healthier people.  The most painful was to cancel travel plans to see my daughters.  I was to visit them for a birthday, but they live in an area that is being dealt with very strictly to control and contain the outbreak in their area.  For me to travel there would be like walking into a hail of gunfire and expecting not to get hit by even one bullet.  But I have also had to cancel their trip to visit me in a few weeks, for fear of carrying the virus.

You do not get to refer to me as “weak.”

I am using my head during this crisis.  I am not panicking and running out buying out all kinds of supplies.  I am not sharing any false information such as conspiracy theories of origin or cure.  I am educated and informed.  And I am hoping the end result for me personally, is that my experience will end just as all of the other viruses I have gone through.

I am a high risk for the Corona virus because I have cardiac issues, pulmonary issues, diabetic, and have no spleen.  I am vulnerable if you must insist on separating who should be concerned about Covid19, and who is just being flat out inconvenienced, do not call us “weak.”  Thinning out a “herd” is not an acceptable concept for humans just because you are being inconvenienced.

 

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
09 Mar 2020

Looking Good?


These two images actually have something in common.  Do you have any guesses?  Well, the outer coverings of both, look pretty good.  I would definitely buy this red delicious apple from the grocery store because on the outside it looks perfect!  The other is a photo of me with a “friend” from a survivor clinic years ago.  He had just given me a compliment of how “good” I looked.  But what if the outside, looked nothing like the inside?  Well, then you would have how I describe my life as a long term cancer survivor.  The outer covering does not allow you to see what I am dealing with my body.

But how many times have you bought an apple that looked perfect, any fruit really, and found out that inside, it was either bruised or spoiled.  Do not worry, I will not show a picture of that as an example.  But you have likely seen that.  Again, that is how I would describe the inside of my body.  Again, will spare the photo.  Instead, I will share this snapshot taken from a symposium for cancer survivors.

First the reality check.  If you were to ask any of my fellow decades long cancer survivors, you would probably hear us all say that we were maybe told one or two things possible if we were lucky.  I remember, I was told a “chance of pericarditis” (inflammation of the heart), and a possibility of a secondary cancer.  Oh, and these were considered possible in the first five years, not “long term” as in decades later, because there was no known studies of such survivors.  There was no reason.  Why?

After we reached a magical 5-year mark, we were considered less likely to have a recurrence of our Hodgkin’s Lymphoma, and it was likely follow-ups would end, deemed unnecessary.  So, we would basically go through life, living like everyone else, with one exception.  We just would not know it.  Our bodies would not age like everyone else’s.  In recent years, studies would confirm this.  But if you were not being followed up by a doctor who knew what to look for, often times, symptoms would just not make sense, and likely, out of frustration, a survivor would feel like giving up on pursuing the problem as there would not be any obvious answer.

Out of the above listed of potential side effects that are now recognized for long term cancer survivors, under chemotherapy, I now deal with:  bone and joint, dental, digestion, fatigue, heart, infertility, kidney, lung, nerve, osteo, and risk of other cancers (had a scare a few years ago).  I deal with 70% of those issues from chemotherapy.  As for radiation:  dental, cognitive, digestion, fatigue, heart and vascular, thyroid, infertility, intestinal, lung, lymphedema, osteo, hair loss, stroke risk, risk of other cancers.  I deal with 80% of the listed issues.  Under surgery, I live with 75% of those issues.  Hormone and immunotherapies did not exist for me thirty years ago.

So there you have it.  You cannot see it.  But it is there.  At least with an apple that is bad on the inside, you can just get another apple.  With my body, I do not have that option.  Neither do my fellow survivors.  So what are we to do?  I can tell you what we cannot do.  Just “get over it.”  Or another favorite, “stop thinking bad things, you will make them happen.”

This attitude for a long term cancer survivor will do as well as it would for the ostrich with its head in the sand.

It is not known who or why, someone develops a late effect or multiple late effects.  But if you are one of the unlucky ones, and you are not being taken care of, your fate is pretty well certain.  And those around you will wonder “he looked so healthy.  What could have happened?”  And if it is a fellow survivor who hears this news, the first thing we wonder, was it because of a late effect?

Awareness is the first important part of long term survivorship.  That begins with follow-ups.  Today, doctors know that they must follow patients “forever.” Why?  Because of survivors like me and others, 30, 40, 50 years out from our treatments, long enough to have secondary issues.  Participation in a survivorship clinic gives survivors the best opportunities to deal with things before getting too extreme, such as my “widow maker” back in 2008.  I had no follow up at all for heart damage, and eighteen years from my treatments, cumulative and progressive radiation damage nearly killed me.  On one hand, this is an advantage I have over a “healthy” person who is not being surveilled.  With annual follow-ups, I should never be in a “widow maker” situation again.  Well… sort of.

Follow ups today begin with baselines of everything from cardiac, pulmonary, and muscular.  Then, depending on the frequency of the follow ups, determines the course of action on current testing compared to the baselines.  For us decades long termers, there were no baselines.  For many of us, numbers and measurements are already at concerning stature.  But that brings us to another problem.

Risk.  Because of the damage done, especially from radiation, risk of correction sometimes is worse than the risk of the actual condition.  Therefore, what happens is we end up “watch and wait” until the risk of doing nothing is worse than the risk of correction.  As in this example.  Let’s say a carotid artery is badly scarred from radiation and is blocked 75%.  Yes, that is a pretty bad number.  But the risk of correcting it, carries a pretty high stroke risk, higher than the current risk of doing nothing.

That is how I would describe several issues with my body.  So far, two things finally got to a point where they had to be corrected.  The risk of doing nothing was worse than the correction.  I am still looking at two others… waiting.

So, once a survivor is aware, is when advocacy takes on a more important role.  Because it is one thing to know, it is another to protect yourself.  All too often, we put too much trust in our medical team, and that is not a bad thing.  But as a member of our medical team, that’s right, it includes the patient, we need to speak up when something does not feel right.  If the doctor says, everything went well, and you do not feel like it, you need to say something.  Because not only does our body betray us with these late side effects, though our doctors’ hands may be quite skilled, the final concern is the one that causes many problems, some times tragically.  Many survivors get through a procedure, only to run into complications with infections or other issues, and the body cannot take any more trauma.  And again, the first sign we feel something is wrong, even if the doctor does not “get it,” we need to convince the doctor.  Over the years, I have lost count of the many survivors who went through procedures, even just common ones, or suffered some sort of trauma from an accident or fall, or anything else, actually get through the corrective actions, get well into recovery, only to all of a sudden change direction, tragically likely due to infections.

And that is our reality, if we are “lucky” to know it.  So yes, that apple may be bright and shiny, and may even be crisp.  If the apple feels soft inside, of course the apple cannot feel something is wrong inside.  It is an inanimate object.  But that does not mean it is not there.  Well, my shell may be bright and shiny, and that crisp smile I share with everyone, unlike the apple, I do feel what is inside.  Just like the apple, just because you cannot see it…

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
06 Mar 2020

Corona Virus – No Hype, Just Facts


There it is.  The Corona Virus.  Covid-19.  That is a fact.  What makes it bad?  That it has the word “virus” with its name.  Defined simply, it is an organism that has a detrimental result.  The problem is, how bad can the virus get?

At one time, we used to just let our doctors diagnose us, and treat us.  And it was that simple.  Of course we had to deal with outbreaks, but we did not have social media to broadcast the mayhem and paranoia, and in the case of the Corona virus, even racism.  And now, we cannot even rely on factual information from our leaders, out of concern for how it may impact our day to day operations or our economy.  And pardon my cynicism, but as a country that prioritizes profit over health, I understand why there is the need to minimize the severity of this current health crisis.  Already the war cries have begun, comparing Corona virus to a flu outbreak, heart attacks, car crash deaths, all meant to lessen the impact of what we are dealing with.

My post here is not going to be conjecture or assumptions or hype.  With my involvement in the medical community over the last thirty years, I believe in the resources that I have used to find out as much as I can, to protect myself, and if necessary, take care of myself in the event of an infection.

These are all major health networks that I have a connection to.  For that reason, I feel that I can trust what they are reporting about the Corona virus.

At issue, is just who is going to contract this virus and why.  And you need to understand the “why.”  Everyone is at risk with a new virus, and for one reason, you do not have any antibodies in your system, like you would have from a prior exposure or vaccine.  That is how that works.  So then the next issue is, how bad will it get.  This is the fuzzy area.  Because if you are a “normal” and healthy individual, if you contract the virus, your symptoms may be minor to flu-like and then recover.  Some may just carry the virus.  And then there are those who have pre-existing conditions.

There is a group of people always listed as especially susceptible, the elderly, the immuno-compromise, the young.  And I suppose this is where the anger and more importantly, the misinformation originates.  Under normal conditions, if something does not affect you, what do you care?  You don’t.  And you move on.  So, here we are with Corona virus being told it is not going to affect normally healthy individuals, and of course it is likely that they do not want to hear any more of it.  But here is why the healthy need to hear it.

The immune systems of the elderly do not work as well as they used to.  And according to resources, those with cardiac, respiratory, and compromised immune systems, not only have higher risks, but also potentially difficult recoveries.  In my case, I have all three of these pre-existing issues.  So, yes, I am paying a lot of attention to what is going on.  But I am also dealing with it, like I have dealt with all other potential exposures.

At work, I would actually go home if a co-worker came in with some illness that could really have an impact on me.  When my daughters got their vaccines, depending on if it was a live or dead virus vaccine, I was restricted from diaper duty.  I even restrict myself from exposure to those who have received a live flu vaccine until a certain time period.  But I do not lock myself in a plastic bubble until everything passes.

I carry all kinds of alerts and identification warning those who must care for me, the various issues with my health.  And I rely on medical personnel to respond appropriately.  That means that the rest of the efforts fall on me, and those around me.  Again, if you are normally healthy, you may not even get sick, or not as severe.  And if you do not get sick, you might still be a carrier, meaning others can get sick from you, even if you do not.

That is why this is a big deal.  And that is why, in spite of the false assurance of our government, we are likely to see an increase in these cases, because of carriers, not just the sick.

We are not prepared for this virus, and this is not the first time.  That is why we have these outbreaks.  We do not have vaccine yet.  We have only just begun to have testing kits available for use.  But there is no protocol for if we suspect we are dealing with Corona virus.  Do we call for help?  Do we walk into a doctor office or ER, and risk contaminating everything?  Sure, washing hands and not touching faces (not something I have had an issue with much to my friends’appreciations) help, but what exactly are we to do if we think we have it?  But every one of these networks, and many more all say the same thing, and it does contradict the misinformation being dispersed, we are going to see more cases.

But as I said, even with my health issues, I still have a life I want to lead.  I have to travel to see my daughters, and there are other opportunities that I might be in groups of people.  I have previously written about the use of the “surgical” masks that people feel protect them from viruses, and they do not.  They are a splash guard for your sneezes and coughs.  But they do not prevent you from breathing in airborne particles, like viruses.  The use of the N95 respirator, and here is the key, properly worn, is the level of protection needed.  Here is the problem, medical personnel need these in order to take care of the sick.  And just like people flocking in fear to Costco and Walmart to prepare for a hurricane, the shelves are empty when it comes to masks, sanitizers, even toilet paper.  This is one message that the medical community is trying to get across, DOCTORS AND NURSES AND EMTs NEED THE RESPIRATORS TO HELP THOSE WHO ARE SICK OR ELSE THEY RISK BECOMING SICK THEMSELVES AND THAT LEAVES NO ONE TO HELP THE REST OF US.  It does not get more simple than that.

So yes, wash the hands thoroughly.  Cover yourself properly when you sneeze and cough.  Sanitize surfaces that may get contaminated.  Stay home if you think you are sick.  And if you are using the masks, they are not reusable.  Properly dispose of them.

I have gone through SARS, bird flu (avian flu), swine flu, MERS, and though not an illness, the events of 9/11.  Dealing with Corona virus, it is going to be no different.  We still have to carry on with our lives.  We have no reason to hide in seclusion until it passes.  We just need to be a bit more careful.  We need to be informed.  And we need to be prepared to make necessary changes as they come up.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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