Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

Post #225 – Flashbacks


No, I’m not going to go back and do a retrospective of my first 224 other posts.  But as I sat here wondering how I could show how much having this venue to share my stories and experiences with you, has had an impact on me.  Over the last year, I have touched on many subjects.  I have made lots of contacts with each of the subjects I have written about.  This morning, while exercising at the gym, I had one of those flashbacks.

Flashback #1

I recall the day that I knew I was in trouble, something was not right.  I was on a piece of exercise equipment for a good cardiac workout, the eliptical.  I am not much of a runner, or walker, or stepclimber.  Okay, I do not like cardiac workouts.  I like weight training, though I do not have the body of a Greek Adonis, for going through what I have been exposed to in regard to chemotherapy and radiation therapy, my body does show the wear and tear that it has been through.  But I liked the eliptical for some reason.

The handles had sensors on them to grip onto with your hands.  They measured your heartbeat as you did your exercise.  Of course, for a good cardiac workout, you want to get your heartbeat up to a certain number for the “good burn”.  However, while you want to hear “0 to 60 in seconds” when comparing cars… not so when it comes to the old ticker.  Within a couple of minutes, the monitor would display the rapid climb of my heartbeat from 67 at rest to 152 all the while I was experiencing a tightness in my chest.  Because it was not the excrutating pain I have heard heart attack patients describe, I took it as no big deal.  All I had to do was slow down just a little bit, and the heartbeat would get down to the green level.

After 4 months of this, I finally made the call to my doctor to complain about this nuisance that just would not go away.  In fact, it was bothering me at work the similar way.  One nuclear stress test, not normally done on a “healthy” forty-two year old, and 48 hours later, I underwent emergency open heart surgery to perform a triple bypass, which was then downgraded to a double.

Having had my chest cracked open and wired back shut, I felt far from the “lucky man” my doctor proclaimed me to be.  Dr. Sarnoski had told me that I had prevented my fatal heart attack.  It was not a question of if, but when.  My stubborness and pain tolerance submitted just in time to save my life.

As time would go on, I had to get back to exercising.  I had since joined three other gyms.  My recent stint is now in its second month.  And I am doing quite well, getting a grip on my weight control.  But there it was, the eliptical.  I had not seen it since April 13, 2008, back when exercising on it could have caused my death due to a massive heart attack.  Healthy for the most part, I should be able to handle this machine.  I undergo annual screening for my cardiac system and though there are some slight issues, all in all, I am good to go.  But mentally it is difficult.  I had no idea the silent killer that was active inside of me back then.  Could it happen again?  I climbed on the machine and started to step.  Keeping a smooth pace, my heart rate began to climb.  In my head, how fast would it climb?  I did the exercise for five minutes today, and at no time did heartrate ever climb over 120, nor did I have the chest tightness.  I have finally conquered one of my biggest fears.

Flashback #2

The hardest thing for a parent to experience is the loss of their child.  The next hardest thing is for a parent to experience is watching harm come to their child such as a major illness, such as cancer.  I have witnessed both of these events, many times over.  But what about when the roles are reversed?  When the child must take care of the parent?

Earlier this year, my father was diagnosed with lung cancer.  What had originally been discovered courtesy of a cough, diagnosed at the earliest of stages, soon escalated to a stage three cancer, requiring chemo and now radiation.  Wow, we went from just being a spot requiring the portion of the lung to being removed, to now needing chemo to take care of any stray cells.  The surgery itself went fairly well, but an unplanned event occurred at some point either during the surgery or recovery.  All of a sudden, he was diagnosed with having suffered two strokes.  Now instead of being his health advocate, now my brother and I were faced with being his caregivers.

I have had my share of surgeries.  I have gone through so of the most toxic chemotherapy.  I have been exposed to enough radiation therapy that you could probably have eaten your lunch on the floor of Three Mile Island and not have gotten as much exposure.  So I understand completely the risks associated with all three of these processes, because I have had to deal with all three risks.  I know what it was like to go through the processes, and I know what it is like to deal with the side effects.  But now I was going to have to watch my father go through it, and unless he regained his cognitive abilities soon, I was going to have to make the decision on his prognosis.

And so, for the first time in 23 years, I was meeting with an oncologist to discuss a new cancer journey.  And that first step would be stepping inside a chemotherapy suite for the first time in as many years.  My suite was fairly unremarkable, plain, nothing fancy except to lounge chairs.  But I was usually in the room by myself along with Brenda, my oncology nurse.  The appointment lasted about two hours.  Then the race was on to get home before my first heave of vomit.  That was back then.

My experience with my dad was so much different.  With a deep breath, and hopefully a good grip on my emotions, I escorted my dad into his chemotherapy suite.  Wow!  What a contrast.  It was bright.  The suite extended down the whole length of the building with chemo lounge chairs lined up along the windows.  Every chair was in front of a window.  There had to be fifteen chairs.  And with each chair there was a television.  As we walked to his chair, we passed an elderly gentleman playing an acoustic guitar singing Jimmy Buffet songs.  As soon as my dad was seated in his chair, a volunteer stopped by to ask my dad what he would like for lunch.  For lunch?  They have not even put the needle in his arm and they want to feed him so that he can throw it up?  And minutes later, here came a beautiful, golden therapy dog who nuzzled his head right onto my dad’s lap.

My dad went through his first treatment without any issue.  But the icing on the cake, after seeing with my own eyes that cancer care has come such a long way, not just since the 1940’s and 1950’s, but from just two decades ago.  As my father rose out of his chair, I heard it with my own ears as well.  “That wasn’t too bad.  In fact it went really well.”

Flashback #3

The final flashback occurred last week.  I completed my second campaign for our local school board.  Two years ago, following an ugly negotiation between our school board and teacher’s union, I made a decision to campaign for one of five seats up for election.  It was a typical campaign, in spite of it being for a school district election.  The incumbents pulled out every stop they could and released several negative ads about five relative unknowns who dared to run against them for their seats.

When all was said and done, two candidates on our slate had done the impossible.  For the first time in our district’s history, two candidates broke into the single political party stronghold, ever.  And with that, the remaining three of us, made the decision, after losing  by the smallest of margins, that we would campaign again.

We found ourselves a fourth candidate, as this election would be for the remaining four seats.  But unlike the first campaign, no one was even aware that there was an election.  Neither party was publishing or mailing anything and our local newspaper did absolutely no coverage.  Voter turnout in an off-year election is difficult enough, but add in the fact that there was no media coverage locally, a worse voter turnout than what had been expected proved just that, worse.  And it was worse for both parties.  Voter apathy.  We lost again, and by a bit larger of a margin.  But in a local election, which has the biggest impact on a voter, and the voter can have the biggest impact on an election, enough people just did not care.

And with that, our school district will head into another contract negotiation.  I am hoping that the school board does the right thing, and keep the negotiations behind the closed doors like they should have been done four years ago.  That is one flashback I do not want to have again.

It Is Just Not Fair


I am a thousand miles away from a good friend.  This is a friend that I came across by chance, and given the millions of people in our country, “chance” is really an understatement.  Tonight, as I write this, he is facing his most difficult battle, fighting for his life, which at this point, after two days, have still yet to find out what has caused his body to fail him.  When you talk about “body failure” the first thought is likely “how old is he?” assuming that being a little long in the tooth would somehow justify the body developing serious illnesses and such.

But he is not old, far from it.  He is a young adult, too young, still a boy, a child.  He has barely experienced life.  And for the second time in less than a year, he is in for the fight of his life.

We share a similar circumstance, at the same age, we were diagnosed with the same cancer.  And though decades apart, with different treatments, we both experienced successful remission.  But there is a crap shoot when we take on cancer, that perhaps the treatments may be worse for us than the cancer itself.  For me, it took eighteen years to find out just how bad the late side effects had become, the damage from the treatments that have given me 23 years in remission.  For my friend, he has barely gotten past two months of recovery from his chemo.

He now lies in a bed, in intensive care, breathing with the help of a ventilator, awaiting air transport to a hospital far from home, a facility better equipped to diagnose and treat, and send my friend back home.  They have to send him home, they just have to.  Currently the doctors are baffled as to what has gone wrong.  A seemingly small symptom has erupted from a spark to a widespread brushfire, threatening to take his young life.  Did the treatments leave his body’s immune system compromised to a brutal virus?  Did one of the drugs used in his cancer treatments catch up to him with cardiac damage?  Is it something totally unrelated to his prior battle with cancer?

Just as with his cancer battle, his family has often turned to me for advice and direction.  Hoping that somehow my experiences may shed some light on what to look for that has brought two parents to an ultimate surrealness, a nightmare.  And all the parents can do is just put their faith in the doctors as they face yet another hurdle.  He is to be transported via helicopter to the more experienced hospital.  The parents really have no say if they want their son to live.  This will be his best chance to survive, to beat what is challenging him.  It is just not fair.

Back when I was diagnosed, I changed oncologists because I didn’t like my doctor’s bedside manner.  He was boring, did not want to seem to spend a lot of time with me, let alone make small talk.  When I started counseling cancer patients I found out why.  Yes, I knew cancer was bad, but I thought just for the patient.  Quite the contrary.  The first patient I cared for was a 14 year old girl also diagnosed with the same cancer.  Her story ends tragically at the age of 17.  I was devastated having spent over two years with her, talking to her, listening to her, consoling her.  I learned the hard way, what my medical professionals were being criticized by me for, cancer is hard on the caregivers as much as the patient, just in a different way.

Survivor guilt crashed down on me severely, enough to make me withdraw from something that I wanted so much to do, help those who were going through what I went through.  I wanted to give hope to an awful disease.  But fate had decided that she would not survive, while I would.  It is just not fair.  I would return to counseling in a few months, but with the bedside approach that my “fired” oncologist used, detaching myself emotionally from the crisis at hand.  And for two decades this worked.  I have met so many cancer patients and survivors.  And while many have survived, I have also said goodbye to too many.  In most cases, I was not involved with them long enough to get emotionally attached.  For those that beat their cancer, we celebrated.  For those that lost their fight, or were challenged to hard by late side effects, I mourned and moved on.  That simple.

For my young friend, I have followed him pretty much from the beginning.  Counting along his treatments, one by one, and the subsequent shots to help boost his immune system and blood counts.  Never once hearing him complain about what he was going through.  He simply did what he had to, and he beat his cancer.  It is just not fair that just as he regained his strength, began to grow his hair back, and began to get back to the life he led, he is now fighting to hang onto that same life.  It is just not fair.  My survivor guilt has returned in a huge way, why him and not me?  Advances in medicines to treat the same illness were supposed to lessen the toxicity and side effects.  I had way more exposure to chemicals and even radiation, and had more time to enjoy my remission.  It is just not fair.

For only the second time, I am knee deep emotionally involved with my friend’s situation.  It was not supposed to happen like this.  For the last forty-eight hours I have been begging the God I believe in to help my friend.  I have begun to reach out to anyone who will listen, who believe in whatever they believe in, to send prayers or at the least, positive thoughts to him.  I do believe he can get through this, I really do.  I need him to get through this.  He has so much to experience.  I would trade with him in a heartbeat to give him that chance.  But it does not work that way.  It is just not fair.

Fight my friend.  You fight with everything you have.  Your family is by your side and they know you are with them, fighting all the way.  Your friends are thinking of you, praying for you, hoping for you to come home real soon.

Pen Pushers Suck!


While our paid congressman continue their tantrum and continued effort to eliminate health care for millions patieand deny deny so many millions more because of pre-existing conditions, fortunately I currently do not have that problem with my insurance…yet.  There is one issue about the Affordable Care Act not addressed and is just as important as accepting pre-existing conditions.

While in the waiting room with my dad who was scheduled to get his third chemo treatment, there was a woman at the receptionist window wondering where her father was.  He had been dropped off by her to receive an injection to helhomies body recover his red blood cell counts which were effected by his treatments.

There was one problem.  His blood level was 10.1 and the insurance would only cover the injection if the count was under 10.  Okay, the first ridiculous fact is he was being denied the coverage for .2 of his count.  The second problem is that his count would undoubtedly drop more over the next days anyway because that is what the chemo would do and he would need the injection anyway.

But the pen pusher accomplished what they wanted, denied covering the injection. Forget what the doctor who actually saw the patient wanted done.  The pen pusher at the insurance company saved the company’s finances by taking care of this cheater abusing the health care industry.

The patient refused to sign the waiver as he could not afford the injection out of pocket.  He left the hospital leaving his daughter and nuts nurses wondering where he got to.  The daughter was his transportation and her father was missing.

While they searched for the patient, another call came through to the hospital.  The evil sand heartless ogres at the insurance company had changed their minds after the doctor stopped talking to or treating other patients just to argue and defend what he had ordered by his observations of the patient.  But of course the pen pushers were only worried about preventing this cheat with getting away with the serious of meeting the needs of his care.

They located the man in the lobby of the hospital.  While his daughter was relieved as I am sure was the hospital, this situation should never have happened in the first place.  Unfortunately, it is all too common a practice.  So go ahead congress, continue to fold your arms and hold your breath.  People are dying or suffering needlessly because we treat our patients with $$$ instead of medicines.  And jig you don’t have the $$$ you don’t get the medicines.

Shame on you congress.  But what do you care?  You are still getting paid and still have your excellent health care coverage that does not hold you to the standards this cancer patient faced.  Then again, you were elected by the People to represent the People not special interests.  And as a voter, that makes me your employer.  And just as I do not have the luxury of telling my boss I am not going to work because I do not like something, and still want to be paid because I would be accused of insubordination and fired… I have one thing to say.  GET BACK TO WORK!!  The ACA is not perfect, but it has to start somewhere.  There is clearly more work to be done to prevent the greedy pen pushers from making these horrible decisions denying the care that is needed.

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