Paul's Heart

November 16, 1988

After spending nearly six weeks in denial of a lump located in the left side of my neck, and at least five second opinions of doctors ranging from primary care to sports medicine, I relented.  I made the decision that I would go ahead and have the lump biopsied, a fairly routine procedure.  Since I knew that a biopsy was going to be surgical in nature, I was caught completely off-guard by being sent to an “oncologist”.  To be honest, I knew what the possibility of a “lump” was, but never, ever thought it would reveal my own cancer.  And even as I pulled up to the office of Dr. G, where his yard sign clearly displayed, “Oncology and Hematology”, I knew “hematology” had something to do with blood.  And I figured with the planned biopsy, I was just being sent here for pre-surgical bloodwork.

Once inside the office, I got the standard “please fill out all this paperwork”.  Nothing to indicate anything more than a routine visit.  But I notice that there are a lot of somber patients in the waiting room.  There are no conversations going on amongst any of them.  Clearly, they have a lot on their mind.  I thought it may only be a coincidence, there were three without any hair, or wearing a “do rag”.

My name gets called and I get up to follow the nurse back to an exam room.  But I am actually led past the examination rooms and asked to have a seat inside an office.  Now I am really confused.  In walks a gentleman standing a clear foot taller than me, strongly resembling  the actor Jeff Goldblum (as he appeared in “The Fly) and introduced himself as the doctor.  As quickly as he walked around his desk and sat down in the chair behind it, he blurted out the following statement:

“Hodgkin’s Disease is a very curable form of cancer.  We see it a lot in people young in age.  And when caught early enough, it has a very high cure rate.  So, consider this, if you were going to get a cancer, this would be the one to get.”

WHAT!?!?!

I came here for a freakin’ blood test!  You have to have me mixed up with someone else!  I never met you before!  Hell, I do not even know you now!  I finally have my life together!   Where do you get off telling me that I have cancer?!?  Screw that!  I am out of here!

Yet my feet did not move.  I do not recall much more of the conversation, but I did stay for it.  Eventually, he walked me to an exam room, looked me over, especially at the location of the lump.  And then “The Fly” basically repeats the speech that he gave me back in his office.  I am in shock.  He thinks I have cancer.  I am only 22 years old.

Plans are discussed as far as diagnostics needed, including that biopsy.  He also discussed with me the various treatment options available, and some that were not due to limitations with my health coverage.

On the way home that evening, I drove past my employer.  I worked for a small “mom and pop” type c0mpany.  Even at 7pm, I knew that Jeff, the owner’s son would still be there.  Jeff was quiet, and though my work station was located just outside his office, we barely had any personal conversation of any duration.  Jeff would be the first person to hear “I have cancer”.

Of course, he took the news very hard.  It was a shock for really anyone to find out that someone close to them has an often fatal disease, but back in the 1980′s, mortlity rates were still fairly high.  We talked about my benefits and how they would limit where I could have my treatments and by who.  Also, while I definitely wanted to beat the disease, I was concerned that I could not.  I did not have the faith in where I felt I needed to go, and where I wanted to go.  Emotionally, I needed more care and I was concerned by having to get care in a large facility, I would get lost.  I would be called in as a “number”, be treated as a “number”, and dismissed.  We talked for close to an hour before I realized how late it was.

Having gotten my dry run of “I have cancer” speech” out of the way, I had one more person of immediate importance to tell, my fiance (now ex-wife).  I got to Judy’s house, walked in, and found her along with her family sitting in the back room.  I asked Judy to join me out front in the living room.  She could tell something was wrong.  I know this is so cliche and I apologize but, then I told her to sit down.  Tears began to run down her face as she anticipated before a word was spoken, this was not going to be good news.

“The doctor says I have Hodgkin’s Disease, cancer.  Personally I think he’s wrong, because he was giving me the speech without even having shaken my hand.  How could he know anything about me, he hadn’t even done anything yet.  Anyway, he wants me to get the biopsy done which he believes will confirm the diagnosis.  There are many more steps after that before they begin treatments, but this could have an impact on our wedding in six months.  In fact, it could have an impact on the rest of our lives.  If they decide to use this one chemo drug, there is a likelihood that I will not be able to get you pregnant.  Any dream or hope you grew up with having a storybook marriage would be gone, forever.  So, I offer to you, let me go.  We part as friends and I hold no ill will towards you.  It is obvious that I will never be able to give you the things we talked about, the things you dreamed about.  And that is not fair to you.”

We talked a great deal longer, and cried a lot of tears.  This was not something that would be cured by a simple antibiotic.  Tests had to be done to determine just how bad the cancer was, called staging as that would determine the treatment, either chemotherapy, radiation, or both.  This was going to be difficult for us both emotionally as well.  We decided to go through with the wedding as planned, regardless of what stage of the process I was in.  We talked about a different kind of future.

It was just before midnight when I left Judy’s house.  When I had arrived home, my answering machine was blinking the number “2″.  I hit play.  The first message was from Judy wondering where I was, it was close to 9pm and I had not gotten to her house yet from the doctor and she wanted to know how things went.  The second message was from Jeff.  He told me not to worry.  Concentrate on beating this and get better.  Effective immediately, not just myself, but all of my co-workers had their health benefits changed/increased at the company’s expense, to allow any of us, the opportunity to be seen by whoever we chose, treated by whoever we chose, treated with whatever was necessary.  There would be no delay with pre-authorizations or appeals.  Jeff wanted his employees taken care of now, and with the best opportunity for recovery.

U.R. Sharpe

To: U.R. Sharpe

From: Paul Edelman

Date: August 20, 2012

Re: Irrational Fear

U.R.,

I wish to bring something to your attention. Allow me to get right to the point, your point actually. On a regular basis, you strike fear in me at the mere mention of your name. You can disguise yourself in any form you like, gauge, length, and now, needleless. The tasks that you are assigned and the locations that you are placed only compound the stress that you cause me. I have faced more serious hazards than you. But even scalpel blades that leave huge physical scars do not inflict the emotional turmoil that you do.

Just to hear someone mention your name raises my blood pressure. Your appearance may only last seconds, but the anticipation of insertion can cause nausea, faint of heart, and occasionally, even panic attacks. Yet, your benefits far outweigh the consequences. Without you, there would be less than half of the tools to diagnose my ills. Unable to find out what is wrong with me, would mean that there would be no way to heal me. And as an additional torment and the cruelest of ironies, the majority of treatments used to cure me require your use.

So for all the good that you do, for all the potential you have, why is it that I would rather face my chest wall being opened for open heart surgery again, something I know should be much more lengthy and painful to endure, than just a “little prick.”

And speaking of those, the whole concept of feeling a “little prick” is that it is not supposed to even be seen, let alone felt or know when inserted. Ask my wife she will tell you how painless it should be. Why can’t you just stick to the old faithful “a slight pinch”? It’s still a lie, but accurate and no double entendre. My body’s reaction is more magical than an illusionist auditioning on a talent show the way my circulatory system disappears. My veins roll like a sack of spilt marbles. Do you get my point? I know that I would rather avoid yours.

Sincerely,

Paul Edelman

Ignore What You Are Hearing

The dentist.  From the earliest of my age to present day time, no one has put more fear into me, prevented me from attending appointments, or having flat out having panic attacks, than going to the dentist.  Allow me to put this into perspective.

Decades ago, my dentist was an older gentleman, but very good with children.  He had a calm voice, very reassuring.  And his hygienists were always very pleasant.  In times of more involved dentistry (cavities) of course there would be some pain involved, but with the help of some laughing gas along with novacaine, I always managed to get through those appointments.  My dentist and hygienist did fairly good preaching good oral hygiene to me so I really did not need any more support in that area.  But my mother knew her role in that she wanted to make sure that I knew what was at stake if I did not take care of my teeth.  So, what better way to convince me to brush every day, see the dentist every six months, and take really good care?  “When I went to the dentist, his hands were so shaky, and the drill used to smoke when it grinded the teeth.  And then one time, the drill slipped and cut into my gums and I bled like crazy.  I hated going to…”  You get my drift.  That is all it took for me to look at any dentist like Steve Martin as Dr. Maxwell  in Sgt. Pepper’s Lonely Hearts Club Band.

Keep in mind, I have been through cancer involving all kinds of surgeons and technicians.  I have had to go through heart surgery just to name one of the many recent issues involving more than thirteen doctors.  My family physicians did nothing more to me than curing my colds and viruses so I was never afraid of them.  The dentist however, at least my prior dentists will all go down as my biggest fear instigators second only to my urologist (and who could blame me on that one, “man’s plumbing” was never meant to have certain things done to it).  My current dentist however is one of a kind.  For various reasons, I am no longer afraid, okay freaked out, to see the dentist.  Howeverrrrrrr, in the event is something that goes beyond her scope, such as say… a tooth extraction, this does not get held against her.

Shortly after my heart surgery, I broke a molar.  It was then that I discovered what the role tooth hygeine plays in cardiology.  Many cardiac patients discover their conditions following visits to the dentist.  It seems that some bacteria that develops in your mouth, can enter your bloodstream which goes to, wait for it, your heart.  Given my cardiac history, I was ordered onto antibiotics prior to getting the broken tooth pulled, standard preventative care.

This time around I have been treated differently.  There appears to be no concern by anyone (other than me) and I make the appointment and it arrives.  There is something to be said to an oral surgeon who makes the comment “just ignore the sounds you are about to hear” which is followed by crack, crack, crack.  Okay, so I know what just happened, the rest of my tooth has been dismantled in shards.  But then he follows it with, “there seems to be quite a bit of bacteria there, so I’m going to send you home with some antibiotics.”  Which is a little late to be doing that with me.

I just had a round with sepsis back in March and have no idea what caused it.  For days, I reflected on how I could have contracted anything that would have led to me being put in the ER via ambulance at four in the morning.  And hear I am lighting the fuse on the “stick of dynamite” that I am now holding.  I know the protocol from here on.  Take the temperature at first sign of warmth.  And if by chance I hit a temperature of 101, then it is off to the races.  Hopefully, this ends up harmless.  But I will be a little more steadfast and stubborn when it comes to a decision like this, like I am with everything else.  Many in my life do not understand why I trust my care with a network located in another state, because they have the experience that my life relies on.