Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

10 Mar 2021
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When Those Closest Do Not Even Get It


When someone gets diagnosed with a serious illness, such as cancer, initial feelings for those around the patient, are often shock, fear, concern, hope, and encouragement.  In too many cases however, these feelings often fade or are extinguished as quickly as a match’s flame is blown out.

And just as when that match is blown out, it leaves behind an awful, sulfur smell.  Of course we do not expect a match to stay lit forever.  And nor should we expect many who we are acquainted with to carry the concerns and encouragement for a successful path in dealing with our serious illnesses.

The truth is, we do expect, and we should expect, those closest to us, such as our family, closest friends, and perhaps even co-workers, to continue to be concerned and offer encouragement.  After all, these are the people that patients spend most of the time with, witnessing all of the stressful moments, struggles through treatments, and the fears of the possibility of not reaching remission.  It is a no-brainer.  If the patient is your spouse, parent, child, sibling, best friend, close co-worker, you are expected to be there no matter what.  We need you.

Then how do we go from them being there for us, to not being there, and/or betrayal?  Wait.  WHAT?  Betrayal?

That’s right, I said betrayal.

Being there goes without saying.  Your loved one or close friend, likely one to even be a medical advocate or proxy for you, stands by you no matter what.  Their only concern is helping you get through this awful journey that you were forced to take on, through no fault of your own.

And if you are lucky, this is exactly the situation you have had, or someone you know may have experienced.  The last thing anyone would expect to happen to a cancer patient, or anyone facing any other serious illness, is to get “kicked in the teeth”, “punched in the gut,” whatever expression you want to use, while going through something so difficult, often times possibly fatal.

It happens more often that many may be aware of.  And unless you participate in many of the forums as I do, you may be unaware just how often this occurs, or how serious it gets.  Experiencing this behavior myself, on numerous occasions, I have seen countless others, even as they faced death, be treated just as horribly.

As I said, there are two types of this unacceptable and inexcusable behavior.

The first, if you can believe, develops as a “jealousy.”  That’s right.  The cancer patient must be getting some special treatment that is not enjoyed by all.  An example, back when I was diagnosed, many co-workers thought I was given special privileges for time that I would miss from work.  It never happened.  I lost income from the time I missed unless I used sick pay.  During my survivorship days, where I have struggled with my health from the treatments thirty-one years ago, physically unable to do many of the things I once did, and protected by the Americans With Disabilities Act, it was common for co-workers to bitch that it was not fair, that I got paid the same rate, and was unable to do every task that they, being healthy were expected to do.  Imagine that, jealous of the guy who has cancer, or just had open heart surgery (my list goes on).  I challenge one person reading this, who would jump at the opportunity to switch places with me.  No, seriously, I would love to play baseball again, or go whitewater rafting or skiing like I used to.  Come on!  Any takers?

But the truth is, this behavior is all too common, and unfortunate.  There is not one person I know who asked to be challenged by a battle with cancer.  We are the one being inconvenienced.  You get to go through your life all happy and healthy.  The attention given to a cancer patient eventually ends up too much for many to accept.  Even vows of “in sickness and health,” no longer matter.

Sometimes, the “loved ones” will attempt to pull attention away from the patient, gathering pity for themselves to make them more of a focus.  “I can’t believe this is happening to me, having to deal with this.”  “I can’t get anything done I want because everything revolves around her.”  The comments go on.  The most nauseating comment I have ever heard, “I can’t believe I am going through this.  After they’re gone, what am I going to do?”  Seriously, if you are in a situation of losing a loved one, and those words leave your lips, the loss of your loved one is the least of your self-absorbed problems.

But hey, once a person is cured, all is good!  Forget anything happened, right?  Let’s move on!  No more pity.  In fact, “it” shall never be mentioned again.  Of course that is a feeling that both patient and caregiver clearly hope for.  But there is a reality.  It does not work that way.

Ask any long term cancer survivor.  Many of us treated decades ago, were done so experimentally.  Short term, doctors knew treatments had a good chance to work.  Long term, they had zero idea at what cost.  Well, many doctors now do know.  But the problem, remember how concern and empathy changed when we faced our cancer?  This attitude returned in a much more awful way.

“I don’t understand, you were cured!  This is bullshit that we have to keep going through more.  Your cancer is gone!”  Many of my fellow survivors will agree, they have heard something similar.

While family may be the same, spouses may be different, different co-workers will be likely, the responses by all are likely to turn darker, unimaginable to come from people we thought cared.  Betrayal.

It is hard enough for us long term survivors to even find doctors who understand or know about our issues.  We are happy to even have a doctor with an open mind, willing to seek outside help.  Many see a doctor, with a definite issue related to treatments, only to be turned away because the doctor is ignorant in our treatment histories.

Even that could be understood to a point.  If it was not covered in medical school, which is was not until a decade ago at the least, how could a doctor be expected to know, unless they attend conferences or continue their education?  I am blessed because I have a doctor who does just that.  But the majority of doctors I have faced, have had no idea.

But a reluctant family member, friend, or co-worker who has had enough the first time if they were around for that, and if not, may not accept that there is even any proof that anything was ever wrong in the first place.

Two things are likely to happen.  Get the situation corrected.  It could be a surgery, perhaps medications, whatever.  Good, all better.  Move on.  You are good to go.  Denial.  Cancer patients now face lifetime surveillance to follow up for potential long term complications.  And a Hodgkin’s Lymphoma survivor treated in the 20th century is likely to have a long list of issues that will never be recovered from.

Again, hard enough for the patient to deal with, those around the patient, push back.  “It’s not fair!”  “I have given enough!  It’s time for me to be able to enjoy life!”  “Why can’t they just get over it?”  Or, “they’re better now!” and settling for the next shoe to drop whenever it does.

Then it comes, betrayal.  It may seem like denial, but it is betrayal, because the loved one actually refuses to believe there is anything wrong with the patient, actively participating in efforts to smear the patient, demeaning the patient into someone just pathetically looking for attention.  The word “lazy” will also often get tossed around.

Many of us have been in this situation.  It is horrific.  We have enough on our plates, including fighting against doctors who may not have the knowledge or will, than to fight our caregivers as well.

In a perfect world, people would simply just care when another is ill, and that is all.  Not worry about what perks they are missing out while they get to enjoy good health.  Not to be resentful because a life-plan did not work out the way it had been dreamt.

In a perfect world, if you are reading this, and this has not happened to you, then I, and everyone else are happy that you have had support that has at the least, been never ending.  Strenuous is one thing.  But if it has never waivered, then you are one of the lucky ones, and I could not be happier for you.

And if you have gone through behaviors like this, you are not alone.

Posted in Bullying, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
09 Mar 2021

One Year Later


Although the warnings had been coming for a couple of months already, this is the time of year that changed for most of us, a health crisis that most of us had never witnessed before, perhaps not even read about in the history books.  Personally, I would rather just enjoy some meatballs or a nap.

Our country was facing a pandemic like never thought possible, for one reason.  We should have learned our lesson over a hundred years earlier.  But we did not.  Just as a hundred years ago, we faced a virus with no vaccine, no known treatment.  What we did have, was the experience of what we knew not to do as this virus would spread worse than wildfire.  And yet, instead of learning from history, we repeated it.

There was no plan to deal with the virus really.  Science was pitted against politics.  Soon, our country would be at its most divided point ever arguing feelings over facts.

Science is not exact.  It is trial an error.  The vaccine for polio did not happen on the first shot (pun intended).  A pill for insomnia was not discovered overnight.  I could go on.

But instead of recognizing the “trial and error” process of science, it was just easier for many to just say, “see, they don’t know what they are talking about.”  And then, enter the political rhetoric, because, those who took feeling over fact, saw any concern expressed by those side with facts over feeling, shouting concerns of the need to do more, prepare, prevent, protect, instead was an attack on their president.  And the only way to protect that president was to deny reality.  It is what it is.  And now, we have over 525,000 dead Americans, over 2 million world wide, from Covid19.  That is fact.

But a year ago, those of us who live by fact over feelings, made conscious decisions.  We heard the experts, scientists.  Sure, some politicians, and plenty of our neighbors and friends contradicted the scientists, but we knew that we had to have faith in those that knew what to do.  Sure, mistakes were going to be made.  But in the end, we expected to get through this.  Certainly, we did not expect it to reach a year, hoping for maybe one or two seasons.  Yet here were are, and though an end is in sight, we still have a ways to go, and still so many disagree with each other.

When it comes to having to sacrifice, I, and many others may have an advantage, being cancer survivors.  We have already gone through life, having to restrict our activities for our own good.  In fact, it is our own experience with science, that saved our lives.  This is why I trust science.

I made the difficult decisions last year, and continue them today, because they are what has been recommended.  Some of these changes have been good ones, long overdue.  Eating in.  My doctors are certainly pleased with weight loss resulting from not eating out, where I would dine on salt and fat loaded foods.  At home, I cook with no salt, and lean portions of meat.

Honestly, I do not miss “greetings” with hugs and kisses at all.  These things always gave me the willies because these gestures I felt were always meant for people that you felt strongly about.  Not as a general salutation.  Just seems so fake and awkward to me.  Even the handshake, while in general I do not have a problem with, I am okay with saying “goodbye” to it.  I will say over this year, I have seen way too many hands go up to mouth and nose, and then not get washed.

I have missed movies and concerts, but even now, many have learned how to stay relevant with streaming services.  The best thing?  Great concessions, free parking, and no traffic once it is over.  But I miss going to the local music scene as well.  Music is how I relax.  In fact, one of my favorite activities I like to do, and need to do, is karaoke.  I use this to exercise my lungs, damaged from my treatments for Hodgkin’s Lymphoma.  Beats inhaling and exhaling with a spirometer.  And, given the nature of Covid19, it is important I keep my lungs as good as they can be.

But the hardest thing for me to deal with over the past year, was my children.  Being divorced, we live a great distance from each other, far enough to require flying.  In the beginning, as we dealt with nothing but unknowns, I had decided that it would not be safe for me to travel to see them, because of my obvious vulnerabilities, nor, to have them travel to me.  I would miss each of their birthdays, Father’s Day, and a couple of other visits.  Being older, my daughters understood the risks and agreed, that until more was known about how to deal with the situation, we would just have to settle for video calls like Facetime and Houseparty.

During the Summer, as more became known, and more precautions being taken, it was time to see what could be done about getting to see my daughters again.  After serious considerations, and all things considered with risks and precautions, both with human mitigation and engineering, we felt it would be okay, following the precautions, to fly.  Wearing masks and washing hands is one thing, but the one concern, being inside the aircraft, that went against guidelines for being “indoors” in close proximity more than 15 minutes was the only thing to be addressed.  And it was addressed through engineering with an air exchange system, circulating the air rapidly enough, not to allow transmission.  It made it possible to see my daughters again in person.

So here we are, a year later.  And just like many other outbreaks I have lived through, and lived with over the years with my vulnerabilities, I am learning to live with this.  I know we are finally heading in a direction that will get this under control finally.  I do feel that we will likely have at least one more hiccup as people “touch the trophy before playing the championship game”, celebrating too soon.

When I saw this image, which occurred in Boise, Idaho over the weekend at a “burn the mask” rally, this is what confirms the likelihood of another hiccup.  And what is worse, besides the fact that it makes a mockery of all the first responders who have cared for patients who had Covid19 or died from it, but is completely disrespectful to the millions who have lost their lives.  And this is what these children have been taught by this act.  I get it.  Some people don’t want to wear a mask, but it is not because they don’t believe it has some protective qualities at the minimum.  It is more of a statement against, and that is a foolish stance to take, and why we are still dealing with this a year later.

 

Posted in Cancer, Education, Family and Friends, Food, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
07 Mar 2021

Studying After The Test


We have all been waiting for the encouraging news when it comes to vaccines and availability against Covid19.  Now to be clear, the three vaccines that we do have, that were discovered in record time, are not clinically proven.  They have not gone through the entire study process that science normally takes.  Our country simply did not have the time wait to get these shots into arms.  And because of that, these vaccines, research “not completed” yet, have been given “emergency use authorization,” allowing the well-hedged bet, a great risk to take.

At least for many.  Those in that group, based on the limited studies, were normal, and healthy individuals.  So, as long as you were in good shape health wise, you will be good to go.  As for the rest, well, we should be okay too.  That will be figured out eventually, but in the meantime, everyone is being encouraged to get the vaccine.  How important is this vaccine?  The last time, we dealt with something so tragic, without a vaccine, this is an image those in generations before me will never forget:

Polio was a virus that attacked the spinal cord, causing paralysis, transmissible from person to person.  Not really known for its lethality, the images of the twisted bodies of survivors from polio, are those that witnesses will never forget.  The last transmissible case occurred back in 1979 due to the fact that we have a vaccine for it (this according to the CDC).

So, with a rapidly contagious and lethal virus, which killed over two million people world wide, over 500,000 Americans, understandably, treatments and vaccines were needed sooner than later.  We are at the “sooner” now.

Here is what we know.  Two of the vaccines have 95% success or higher in preventing hospitalizations and death, and the third though having a lower percentage, still, when compared to other vaccines, is still very successful.  But here comes the bad news.

First, the studies have not shown whether the vaccine will prevent anyone from “carrying” the virus.  In other words, you might not get it, but you could get someone else near you sick.  The other factor, the length of time that the vaccine is only “known” to work for, is three months.  After those three months are gone, there is no study for showing how much longer the vaccine will last.  That is based on the data right now.  Right now, the signs are promising.  But we just don’t know.

This is assuming you are one of the healthy people like those studied so far.  But what about those who have compromised immune systems or pre-existing conditions like several issues that I have.  There are no studies done… yet.

Here is the good news.  An article released last month by the University of Birmingham (in England, not the US dammit), has begun the OCTAVE trial, funded by the Medical Research Council, to study immune responses to the Covid19 vaccines by those with compromised immune systems, including those with cancer.

I stated a few weeks ago, the difficult decision that I made not to currently get vaccinated.  After speaking with several of my most trusted doctors, who were conflicted among themselves what I should do, and would I benefit, that I was left with my gut instinct, based on what I knew about my health history.

Historically, because I have no spleen, I have a difficult time building antibodies without having booster shots of vaccines.  And it does not appear to make a difference which vaccines.  Some that I have had, once thought to be lifetime, I end up with multiple boosters.  And here lies the problem.

With no studies done yet, there is no data on my ability to get a booster, let alone be able to tolerate one (or more).  There is no protocol to test for the antibodies to get a booster.  And finally, there is no protocol to actually get a booster if you were to indeed need one.  What I do know, is I am likely to be in this situation, and it needs to be studied before vaccination becomes an option.  For that, I will say “thank you England.”  At least you are doing something.

The US is not standing by idle.  Those studies that have not been completed so that the vaccines can be officially approved?  They are still on going, either in the 2nd or 3rd stages.  Data will come producing important information like “how long will immunity actually last?”  Another important piece of information needed, that has not been discussed, and trust someone who knows because he has been there, being experimented on, data needs to come out on potential long term side effects from the vaccines.  Sure my treatments 31 years ago cured my cancer, but they knew nothing about the side effects I would deal with decades later.

Clearly, I am not a scientist, so my decision, I am not an anti-vaxxer at all, is based on a hunch.  That is, until the American Society of Hematology published a paper toward the end of the year, addressing questions about the Covid19 vaccine.  For those unfamiliar, hematology is the study of blood, but to those of us who have a history of cancer, we know this study very well.

https://www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines

This is the link to the actual article.  But in summary, there were two questions that stood out to me.  What vaccines are approved for immunocompromised patients?  Why might some patients not respond?  The entire paper is quite interesting to read.  But in the end, until the data is conclusive, the advice is still the same.  It is up to the individual to decide based on their need.

Some need the vaccine to be at work.  Of course there is the need to get kids back in school.  There is a strong desire to get back to some sort of normalcy socially.  And some, will need the vaccine simply not to die.

It is not an easy decision for me, and not one I have made lightly.  And yes, while some still like to argue, “but they can’t seem to get their answers right or straight.”  Yes, that is what happens when we are dealing with an unknown.  There will be mistakes along the way medicine looks for the perfect way to deal with Covid19.  Until then, just as success came with prevention for Polio, measles, and others, science will find a way out of this for us.  But it has only been a year.

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

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