Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2013”

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.

The Homestretch

As a kid, I was very shy, so clearly not very popular.  I did not bother running or campaigning for any elected position like student government.  It is not because I was not interested in a leadership role, just not in the organized hierarchy position.    It was during my battle with Hodgkin’s Lymphoma that I soon realized what my personal definition of leadership would be, by setting example.

When I came to my current employment, my job would require me to join my first, last, and only union job.  Do not misunderstand me, I appreciate everything that my union has negotiated for me, such as group health and life insurance which prior to the Affordable Care Act, I would not qualify for the insurance because of prior conditions.

Being a fighter by nature, a defender for those unable to fend for themselves, I made a decision to run for shop steward in my department.  A shop steward is an elected co-worker, generally quite knowledgeable with the contract we work under, and various other workers rights laws.  Because personalities sometimes conflict, the shop steward also needs to be willing to represent a co-worker regardless of any ill feelings.  In my fourteen years in my current department, I ran thirteen times, and lost all thirteen.  I was the “Susan Lucci” of my department.

In 2009, I made a decision that in spite of not being able to earn forty to fifty votes needed to be a shop steward in my department, I was going to take a shot at campaigning for school board in the school district I live.  (That story is posted earlier this year).  The fact that I would need 100 times the votes to earn a school board position compared to the perennial losses that I suffered at work, I felt I could achieve victory.

I fell short in the election of 2011, as did two of my running mates.  But two other of my running mates did earn seats onto the school board.  And it was their encouragement that convinced me to take another run, this time for 2013.  I lost that election in 2011 by 196 votes.  Only 11,000 voted of the potential 50,000 voters.  But I recorded over 9000 votes.  I personally know maybe a couple dozen people locally, and definitely know less than one hundred people, period.

Besides the personality quirk that I have of not wanting to quit or concede, there is a rush that I get, and I am sure that others get during campaign season.  The schedule is exhausting, as now that we are in October, I am out of my house nearly seven days a week, and usually all weekend long attending fundraisers, public events, and going door to door, meeting potential voters.  There is a tremendous feeling I get, when I am responded to in a positive way.  I am congratulated for stepping up.  I am looked to for hope and help for those struggling.  I am being counted on to make things better.

During my first campaign, there are many memories that stand out in my mind.  And this campaign is no different.  This has been a marathon weekend for me.  So my movements are a bit robotic or automatic.  I was not prepared for one open door that I had today.  I will respect her privacy by not revealing her name.  But after dealing with a late heatwave in the middle of October, today was not one of my fun days, until 5:30 this evening.

I was greeted by a jester.  Well, it was actually a mother who was playing with her children who were also in costume, but the mother was wearing a jester’s outfit.  I could not help but chuckle as she proceeded to explain the circumstances to me, but it did not matter.  She broke the monotony that I had been feeling today.  I explained the platforms that myself and my running mates were campaigning on.  And then she told me what I wanted to hear, that she would support the four of us with her votes.  You see, besides being an outstanding mother to her children, she was also a teacher.  Just one of the many who for years has had to listen to constant unjustified criticisms and fabrications about an occupation that we all rely on for the sake of our futures.

It means a lot to be relied and counted on.  Today is just one of many that I will look back upon and remember vividly.  I hope someday that I get the chance to see that teacher again, only under the circumstances of her congratulating me on a  victory.  And all I ask for, is to be able to look at her and know, that she feels hope again.  Hope that the district’s leadership will be the one to set the example of restoring respect to the teaching profession.

I have never won a campaign.  I won my first election this year, finally of the position of shop steward.  I have not let my co-workers down.  I hope this is a sign of things to come next month.

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