Paul's Heart

Life As A Dad, And A Survivor

06 Jan 2013

Keeping Things In Perspective


The last twelve hours have probably been the scariest I have seen in a number of years.  We have just faced our second major weather storm in two years.  Last year’s Irene packed a lot of rain to her.  But this year’s Sandy had all the makings of a real hurricane to hit this area in a long time.  Howling winds, streets littered with debris, and water collecting in our basement were all reminders of what we were going through.

For the second time in two years, I could not sleep.

At the time that I would normally wake up for work in the morning, I was already awake, never really drifting off to sleep.  After last year’s Irene I was too worried about the possibilities of spawned tornados or any other danger to our home.  With two small children and several pets, along with my wife, we knew our priorities, to keep everyone safe.

So before I left for work, I grabbed the flashlight, and searched around the inside of the house.  I had already heard the girls were awake, but fooled by the late darkness this morning, they went back to bed.  Our garage was dry.  Our basement had quite a bit of water in it.  Our dog had been anxiously waiting to go outside to take care of business.  It was fairly calm at that time, and I glanced around the back and front yards.  Everything seemed in place, trees still standing.  All our outdoor belongings stored on the porch for the storm remained as they were placed.  The trees mostly stripped of their leaves which now lay on the ground.

My family is safe.  I hope yours is too.  When I get home from work, myonly hope at this point, is that my roof is intact.  The things that are down in my water soaked basement will be dealt with as soon as I get home, provided the power has been restored by then.  If anything is damaged, it can be replaced.  Food that did not survive in the refrigerator/freezer can be replaced.  My family cannot be replaced.

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06 Jan 2013

Opening Pandora’s Box


How often have you wanted to reply to the statement “I know how you feel” after explaining to someone about a traumatic issue or stressor that you are dealing with?  Or perhaps the old “You’ll be fine” or “You look great” evokes an attitude of “I was hoping that you would be different but you are just like the others.”?

Breast cancer has an entire month dedicated to awareness.  ALS (Lou Gehrig’s Disease) has chapters nationwide with multiple fundraisers to help fight its cause.  And yes, even the cancer that I had, Hodgkin’s Disease (also called Lymphoma) has the Leukemia & Lymphoma Society.  When it comes to the physiological part of the treatment and cure, our society is very good at using all efforts to bring about the cure.  While I cannot vouch for how patients are treated today, as a survivor from 1990, I was not prepared for the life I would live today.

Officially, I have lived over half of my life with cancer, in spite of cancer, because of cancer.  With no thorough protocol for following my case, only a magic number of “five years” was the only thing that I would pay attention to.  After five years, I would only see my oncologist once a year.  After five years, I could get health and life insurance.  After five years, I could think about applying for a new job without having to be questioned about my cancer patient.  At five years, I no longer had to worry about cancer anymore.  That chapter would be closed.

We have all seen the comic strip Peanuts when Lucy and Charlie Brown are playing with a football.  Lucy holds the football to encourage Charlie Brown to kick the ball, and as she always does, just as Charlie Brown approaches the ball, Lucy pulls the bull out of the way.  Charlie Brown kicks his leg through thin air so hard his other leg swings out from under him, with Charlie Brown landing flat on his back.  And in spite of Lucy promising him (every time) that she will not pull the football away, he falls for it every time, and the result is always the same.  We all know that is how it goes.  And we do not expect anything differently.

When I got diagnosed with my cancer over twenty years ago, everyone that knew me was shocked.  When I found out that my heart bypass surgery and that it was caused by the treatments I was exposed to from my cancer treatments, again, there was disbelief.  And again, a sudden onset of sepsis complicated with pneumonia due to an immune system compromised from losing my spleen as part the diagnostics of my Hodgkin’s Disease, many now wonder, how much more can I take or even how much more is there to go through?

All through my cancer journey I was pretty much on my own, partly by choice, the other part by everyone else’s fear of the C-word.  In remission since 1990, I concentrated my energies on recovery, and that magic fiver year mark.  In 1996 I purchased my first computer and in 1997 for whatever reason, started researching Hodgkin’s Disease.  Shortly thereafter, I found a support group on the internet that consisted of people who had survived cancer.  Some had just entered remission, and many, had been cured for decades.  Survivors on this site had battled a variety of cancers, some battled multiple cancers.  But then I realized something strange, but severe.  Many were also battling other health issues.  Health issues that were brought on by the treatments that they had gone through to beat their cancers.  I had some minor things that I had to live with such as some permanent hair loss and infertility, but nothing near as difficult as the subscribers on this list.  Soon I began to feel guilty because as each day passed, I got to continue to enjoy my remission, while others struggled and I no longer felt that I belonged.  I would disappear and reappear on that list annually just to say hello to those that I had become acquainted with.

But in 2008, “useless” memories would finally become valuable following my heart surgery.  Learning that the bypass was necessary due to radiation scarring from nearly twenty years earlier, I found myself dealing with doctors who had no real experience with long term cancer survivors or how to recgonize our side effects, or how to treat us when issues came up.  And then I appoached it, my Pandora’s Box.  I was home from the hospital one week later and reached out immediately to all those who had gone before me, those with whom I originally felt nothing in common, those who would know who I needed to see as a long term survivor.

And just as the bad can come with the good in opening Pandora’s Box, the same can be said for finding out what I should have known all along.  Protocol is now in place that had not been when I completed my treatments.  There is knowledge of long term side effects from radiation and chemotherapy exposure.  Three concerns remained, diagnostics of any other pending medical issues, the course of treatment or maintenance to follow to make sure that I get to see my daughters graduate and one day perhaps see grandchildren, and emotionally deal with and if possible, accept that hand that I was unknowingly dealt so many years ago.

So just as with Pandora’s Box, there is good and bad.  Several conditions have been discovered.  They cannot be reversed, but the hope is to slow the continued progress.  Issues with immediate consequences are trying to be prevented from occurring in spite of compromised conditions.  There is constant frequent and annual surveillance.  Most importantly, there are so many others like me, who are there to offer me their experience of “knowing what I am going through”.  But there is the counter to the good.  Sometimes there is an obsession with so much that is happening.  There are some in my life who feel by me paying so much attention to my health, that I might just be willing things to happen.  To prevent this from occuring, I frequently bury my feelings and worries so that no one has to worry.  I reach out to those who are in my shoes to give me balance, which many times does not happen, but without them, things would be so much worse.

There are so many survivors like me, only a small few actually know what is happening to them, and can get the care that they need.  For countless others, they spend every waking moment baffling doctors who do not ask the right questions, family that do not recall pertinent details of cancer’s past, and a patient who simply just wants to close the door on the cancer they once faced.  Out of a world with over 12 million survivors, only a small percentage get the attention and care that are needed.  If you were faced with your own Pandora’s Box, what would you do?  I know I am better off for having opened mine.

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06 Jan 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.

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