Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2013”

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.

“May Wan Tee”


“May Wan Tee”.  I am probably spelling it wrong, but this phrase is one that will stick with me forever.

In January of 2004, Wendy and I were notified that we had a daughter that we were going to be travelling to China to meet.  There were meetings to attend, forms to be signed, and monies to be prepared.  Most importantly, since we would be traveling out of the US, we felt that it would be in our best interest to notify our credit card banks about our plans in the event security checked in and shut done our cards because of activity in China.  This plan had been confirmed by many other families, especially with credit union banks.

And so our credit union was notified that we would be leaving for China on March 15 and planned to return two weeks later.  We were wished well, and the process continued.  On March 7th, we got a call from our adoption agency, travel time had been moved up and we would be leaving on the 13th now.  Of course we are all excited.  What an ”inconvenience” to leave for our daughter earlier?!?

So we arrive at Newark International and check in for our flight.  We bought three seats round trip to allow for our slightly larger than average needs, plus it gave us leg room.  Bringing Madison back using only three seats was not going to be a problem.  The problem occurred when we found out that not only were our three seats not next to each other, not only were we not seated next to our “open” seat that we purchased, but Madison’s seat was approximately fifteen rows in front of either one of us (who happened to be sitting on opposite sides of the airplane.  This was not a budget flight, this was a major international carrier.  After a panicked and irate phone call to our agency concerning this snafu, all was settled before we took off for Hong Kong.

I have mentioned two details now that do not coordinate with the original plans, and as you are about to read, they will have a major impact.  Once we land in Hong Kong, our entire travel group, consisting of nine other great families, meet our guide for this leg of the trip.  While Hong Kong is still considered part of China, it has its own government, currency, etc.  Are you with me yet?  First order of business is checking into the airport hotel.  We are recommended to do so quickly, and in spite of the thirteen hour time difference we must deal with, and the building excitement of our growing family, we need to get some sleep.  We will be a family with child tomorrow morning instead of two days from now as originally planned.  All we have to do is check in for tonight’s stay, and our return flight.  That is all.  Nothing more complicated than that.  Piece of cake.  Checked in plenty of times to a hotel.  English is spoken by the representative.  Yep, should be smooth sailing.

I hand him my credit union credit card.  He swipes it.  Wait for it…

“I’m sorry sir, card not working.”  I have been awake and on the road for nearly twenty hours.  But I know what I just heard.  Calmly, I asked him to try again.  He had to have done something wrong while swiping the card.

Here’s the pitch… just passes over the corner of the plate – STRIKE 2!  “I’m sorry sir, it is coming up declined again.”  ALL SYSTEMS… RED ALERT!  RED ALERT! ALL HANDS ON DECK!  OPEN THE TORPEDO DOORS!  Now I hit the panic button and do all that I can from jumping over the counter to swipe the card myself.  I urged him to try it again.  The card had to work.  I was told by the credit union that there would be no problem.  And finally, I struck out.  I was told for the third time, “declined.”

I called Ben, our guide, over to the counter and explained what was happening.  I had only $7500 in cash on me, $6000 which I needed for adoption proceedings and still had to buy our in-country flights, meals, and hotels.  And then Ben said it, “May Wan Tee.”  I said to him with a confused look, “What?  English Ben.”  Ben replied, “no worries.”  He was right.  My credit card was not working.  I was going to run out of cash in less than 24 hours.  Still had to buy meals.  All this while I was preparing for one of the most beautiful times in my life.  Why should I be worried?

The most reasonable thing to do at this point, with less than ten hours now until we met Madison, was to try and get some sleep.  Trying to save cash, eating was not a priority at the moment.  And with the time difference, it was already Saturday afternoon here in the US, so the credit union was already closed for the next day and a half.  How was I going to communicate and get this straightened out?  I had a calling card, but that was supposed to last me the entire trip and the minutes would be used up before even getting an answer and solution to this problem.  I decided to try using the internet and reach Wendy’s mom, giving her all releveant numbers and who to contact.  There was one representative at the credit union who knew me personally, and knew I was in China and could clearly help and I would have Wendy’s mom see her.

By the time we headed for the provincial capital city Nanchang, it was evening in the US, 10am in China.  And we boarded a flight to Nanchang.  We arrived at the beautiful Jiangxi Hotel where our current guide, De had us register.  As all the other families took turns doing so, I approached De soon to realize his English was not as good as Ben’s, but I gave it an effort anyway.  I explained everything so far that has happened.  And then… “May Wan Tee.”  Aw, come on!  You too?!?  And then De pulled out his credit card, put it on the counter, and the desk person took the card, and handed me keys to our room.  Just like that.  I knew De a total of five minutes, literally.

His kindness and belief in “May Wan Tee” taught me alot that day.  I was in a foreign country, very little to no English spoken, no credit card, and very limited cash, with two other people I was responsible for, all for the next eleven days, and I was told not to worry.  His favor to me allowed me time to communicate back home, even with the time difference.  It took three more days to resolve, but I was able to do it without worrying.  It all worked out, no worries.  May Wan Tee.

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

Post Navigation