Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2021”

11 Mar 2021

A Dad’s Thoughts


Ask anyone who knows me personally, and they will tell you that I think of my daughters all of the time.  Whether they were at daycare, in school, at a friend’s house, or in between visits, my mind is always going.

There are things that they have witnessed as children, they still have not taken the time to grasp, if they even will at all.  I have been completely open with my daughters that their questions should be answered.  And likely, there will be doozies that they were involved with, from issues related to the divorce, to their adoptions.

In the meantime, their lives have been spent with me making sure that they grew up with basic values, respect, trust, love.  It was important that they not only learned right from wrong, but why it was so.  I taught them that nothing that they succeed in, can come at anyone else’s expense.

The last several years, have been spent learning about prioritizing, time and money management, thinking about… THE FUTURE!!!!  Not to make the mistakes I made growing up.

The one thing that has been consistent?  I have let my daughters know, every chance that I get, that I am proud of who they are, and the things that they have done.  Of course, now older teenagers, when I do this, there is a response of an eye roll so bad into the backs of their heads, it produces a crashing sound of thunder.  Have I done it so much, that it has lost meaning over time?

This weekend is the first opportunity for the SATs in 2021.  As a rule, I loathe standardized tests as too much time in schools is spent teaching to take those tests.  But the SATs are different.

I do not remember that much about my first, and only SAT.  That was almost forty years ago, YIKES!  I had no prep.  I had no PSAT for practice.  I knew of no other opportunities to take the SAT again.  I had no guidance.  I was on my own.  This is referred to as “the school of hard knocks.”

My Dad was not there for me, most of my childhood and that was the way most of my life went, without all of these influences and needs being met.  There were no examples laying before me or any kind of playbook on decisions that had to be made with my daughters.  I raised my daughters the way that I wish I had been.

I cannot imagine the kind of student, or teenager I would have been, had my Father been as much of an influence as me with my daughters.  I was not an “eyeroller” because I just did whatever the Hell I wanted.  I was unsupervised.

All I knew was, my daughters were going to know that I love them and care about them, unconditionally.

Learning from my past, my older daughter heads into her first opportunity with the SAT, understanding that she is going to take the SAT at the minimum a second time.  She has had tutoring to help her along the way, with a huge study guide, and an on-line study program.  She has taken the PSAT (practice SAT) twice.  In other words, unlike I did forty years ago, just showing up on a Saturday morning to take the SAT, my daughter is as prepared for the SAT as she can be.  My younger daughter is just behind her at the PSAT level.

And yes, cue the sound of the “eyeroll thunder.”  I am proud of them.  And I will let them know it.  I am pretty sure that my older daughter would make a great poker player, as she never shows her hand when it comes to nerves.  If she is nervous about this weekend, she is not showing it.  She never has.  It is that one final thing that both have been taught, in the end, she did her best.  And whatever score she gets, that was her best.  If it needs to be better, she will work on it.  But for now, she gives her best, does her best.  It is her best.

Good luck to my older daughter this weekend.  I know you will do well.

Posted in Adoption, Animals, Education, Family and Friends, Inspired By... | Leave a comment
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

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