Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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.

World Lymphoma Day


Yesterday, many places lit up in green, red, or purple to pay tribute to those patients, survivors, and caregivers who have faced or beaten any form of blood cancer, such as lymphoma or leukemia.  And with that, here is my tribute/memorial to those I have come across in my 23 years as a Hodgkin’s survivor… (and I apologize for any names that I forget – I can always add them – the joy of this being my blog):

Jennifer Shoemaker

Tammy H.

Danny B.

Lisa E.

Stephanie D.

Betty G.

Stephanie Ann

Peter P.

Karen Gallagher

Kim Cheshire

Ardeth

Janice

Jennifer C.

Carrie

Jeff Iredell

Ariella

Cathy P.

Josh

Tobi

Linda

Eileen G.

Carolyn H.

Carol L.

Fernando

Lawrence

Charose

Karen K.

Pam L.

Laura

Edward

Annie L.

Dawn

Donna

Judee

Jennifer H.

Judy

Pat

Theresa

Robin

Ian

Michael S.

and literally hundreds more.

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