Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2013”

Farewell To Two Friends


Finding out that you have been cured of your cancer, only to discover decades later, what cured you is destroying you, is like opening a Pandora’s Box. 

I went through years, eighteen to be exact, wondering why so many other long term cancer survivors had to deal with so many issues, caused by their treatments that cured them, and I was basically left unscathed.  And in 2008, I discovered by a miracle of a chance, that I was not as unscathed as I had believed.  I repeatedly mentioned to everyone pre- and post- surgery, that I had been through Hodgkin’s Disease, radiation therapy, extremely loxic chemo (especially to the heart and lungs), and no spleen, and this was all before I knew anything.  I was handled and treated as any other patient who came through the doors, before and after.

In the weeks that followed, I would discover any number of things that have happened to my body, like a volcano lying in wait to erupt, had so many things that should have been watched and had not.  And because I rarely saw doctors, there was no reason to suspect.  Once discovered, my confidence in my health was shaken and shattered.  In spite of optimism from family and friends, confidence by medical personnel that all was going to be well, I could not get convince anyone that this was more than just “in my head”.

Today I received news that a fellow survivor, someone also battling severe late term side effects passed away.  He went in for heart surgery due to issues developed from his treatments long ago, and though he showed promise of recovery, passed away.  A week ago, another friend had passed away from issues related to her cancer and treatments.  I cannot call them secondary issues, because over recent years, one thing just piled on top of another.  I know Wendy is going to dread the next several days.  After an inability to grieve nearly my entire life, since my heart surgery, I have found out how, and it hurts.  I knew Karen and Peter for so long and was with them in spirit each time they faced another issue.  It was more than an understanding.  It is pure knowledge.  And it sucks to know, not just think, that this could be me.  Pandora’s Box has been opened and while those around me try to close the lid, my hand gets caught every time.

Fortunately, treatments used today are less toxic.  Treatments come with less severe side effects, short term or long term.  And while all a cancer patient wants is to hear the word “remission” because it will mean no longer dealing with cancer, current protocol for good or bad, means that the fight with cancer will be something we do for the rest of our lives.  Oncologists decades ago did not expect us to live this long.  Society did not expect us to survive.  And many of us have survived.  In a period like ths however, the pain and fear of the known and unknown is just so difficult to understand by family and friends, co-workers, strangers, and myself especially. 

Karen and Peter, I will so miss your endless inspiration and support that you selflessly gave even in your roughest moments.  Know you will never be forgotten, and because of you, many will now know what they are going through is real and to be committed to get the care we need.

Blinky, Pinky, Inky, And Clyde


As a child, I had heard of this “thing” that connected to your television that allowed you to play games on the same unit that you watched programming.  The downside to this invention: It burned the images of the game on to your television screen.  So perhaps it was for that reason, along with the cost, that the only time I ever saw an Atari System or Coleco game was when visiting a friend’s home.  It was amazing.  Four man football games played with X’s for the players.  And you could take turns with friends playing the game.  Then there was this game that a light bounced back and forth from side to side, whenever it hit a one-inch bar on each side making a “pong” sound.  Arcades became popular with the invention of games such as Asteroids, Q-bert, and one of my favorites, Pac Man.

 It would take ten years or more, but I would finally have my own system.  I had to be an adult to buy one and take the risk of damage to my television.  But I reasoned that it had to be safe.  Nintendo had already been out for three or four years and there were rumors that a company called Sega was going to produce a game system of their own.  The time was right to take the leap.  I bought the console, which came with its own game pack, Duck Hunt and Super Mario Brothers, but of course I had to buy a football game, Tecmo Bowl.  There were eight NFL teams, and the players kind of resembled people.  And you could actually play against the computer or another player.

 The Nintendo actually served another purpose other than visual stimulation.  As a cancer patient, there were often times that I felt isolated either because treatments had left me physically drained or a pending appointment might have had me stressed out, providing me with a much needed distraction.  And it worked too.  One day well into the evening, I played a strategy game called Final Fantasy for over fourteen hours straight.  I took no break for the bathroom or to eat.  My wife had left for work in the morning,and when she returned home in the evening, there I was, right where she had left me.  But I got through the whole game, something I had never done up until that day.

 Over the years, more game systems came out, even new versions of Nintendo.  But I had amassed a collection of over seventy-five games that whenever I needed a distraction, whatever mood I was in, I popped either a sport game, puzzle game, or arcade game into  the console.  I kept everything in mint condition for nearly fifteen years.

 Then my wife had a yard sale and for whatever reason, thought that it would be a great idea to put my Nintendo and games up for sale.  $25.00.  No warning, just gone.

 So I drop another quarter in to continue…

 I often work Saturdays as overtime.  It allowed us opportunities to travel, purchase things for the house, and with a new arrival coming into the family, the extra cash allowed us to save for our childrens’ futures.  But with all the purchases we have made over the years, we had to make new ones.  We had to buy things for what we had been told would be our one-year old daughter, Madison.  Children grow, but houses do not, unless you build on.  So, we needed to make room.

I am all too familiar with yard sales, and really, though the concept is better than just throwing things into the garbage, the thought of selling anything in near-mint condition that cost more than a tank of gasoline for the cost of a candybar, makes absolutely no sense.  I had no worries.  Most of our purchases were all “girly” type objects, decorations, knicknacks.  If she wanted to sell her stuff for the price of a grocery store Xerox photocopy, that was her business.

I came home from work that Saturday afternoon.  I could tell by the smile on her face, and the emptiness of the driveway that had previously been filled with her belongings, I said, with her belongings, her yard sale was a success for her.  “I made $225 dollars!”  That was almost a car payment so it was no small amount of money.  But when you consider that there was well over $2,000 worth of clothing, lamps, decorations, and furniture, okay.  I let her have her moment.

“I sold almost everything, and then I thought everyone was buying everything, so I put your Nintendo out, and it sold right away.  I also sold the Sega and Playstation.  Nobody would buy the Atari” she said.  Okay, while I was not expecting this at all, she just got done telling me that she made $225.  My game systems were all in near-mint condition.  The only thing that kept them from being mint, was that I opened the packages in the first place.  So, that was one Nintendo and seventy five games valued at over $1000, a Sega system with fifteen games worth approximately $400, and a newly purchased Playstation with five games, which because of the novelty of the Playstation, all was valued at $600.  Now, I was not sitting in front of the television for hours anymore playing video games, and work around the house still got done, and we went out on some nice dates.  So, I know she was not mad at me or trying to exact revenge on me.  She did not sell the Atari which means it was not about killing any free time I had.  Why would she do this?  There was no warning.  “I got $25 for each system,” she said with a sense of pride. 

I stood there in disbelief.  What could have possessed her to make this decision?  Have I been giving her too much attention that she felt I no longer needed the games?  Our future daughters of course would not play with television games.  Did she have other plans for my rec room?

To me, it was simple.  These systems helped to provide distraction, relieve stress, and yes, live vicariously through the electric medium.  I could throw the football like Joe Montana.  I had the accuracy of a marksman, though I’ve never held a firearm in my hands.  I logged in dozens of successful shuttle missions.  I was a constant hero to princesses in all lands. 

She did not sell my Atari, and I still had games on my computer.  But this was more than just what I had remaining.  This is about what I lost and how I lost it.   To this day, she has never told me why she sold my Nintendo and Sega.  But truly, someone realized the bargain that they got – a mint-condition console and dozens of games still in their original casings – for just $25.00.  I spent close to $2000.00 on just the Nintendo.  I am constantly watching just to see if someone else might be selling their system for the steal that my systems were sold.  There are times when I could use that trip to the Super Bowl or just want to check my hand/coordination.  The only difference between then and now, is that now I have my own princesses to defend, and to look at me as their hero.  Though it is still the classic and original, I never looked at the Atari again.  It still sits in my closet.  I even went as far as to purchase the latest craze, a Wii.  But just as my other game systems, the Wii was sold.   The Atari is still here.  Why?

In the later years of my life, I do miss my Nintendo.  I have faced several health crisis just over the last four years, two of which have been life threatening.  Given the treatments that were used to treat my cancer over two decades ago, I am told the risk of more issues is likely.  There are things that I can no longer due physically.  But probably the hardest thing for me to do, is deal with the emotions that have developed.  With so much time on my hands, and so much limited ability, and the fears of what could come, I should could spend some time playing Final Fantasy (the original version), Othello, or even Tecmo Bowl.

I clearly have not forgotten about the older game systems that I once owned.  My time spent with the newer systems was short spent.  But the Atari dates back to a much simpler time.  Electronic entertainment was affordable.  Decisions made during the games came with less consequences.  Today’s games place our lives at a level of experience, only witnessed by professional athletes and high ranking politicians.  But the best thing about the Atari, it would take me back to a time before I had to deal with any of this stuff.

Hodgkin’s Disease – My Treament In 1989


The following are the treatments that were used during my first diagnosis of Hodgkin’s Disease, and the development of new disease.  The treatment plan used on me, is rarely used any more as safer and less toxic methods have been found.

Radiation Therapy – 6 weeks

Gamma radiation was beamed into the upper mantle of my body (ear line to mid-abdomen), scatterred field.  Scattered field is like spilling boiling water:  as the water spreads out over the surface, it is still hot enough to burn or damage the surrounding areas.  The idea is to radiate the lymph nodes in my chest, arm pits, and upper abdomen.  There is a lead block placed over my breast bone to “protect” my heart – 30 treatments with the linear accelorator over six weeks.  I would have time over the weekend to recover physically and physiologically what I could.

A unit of radiation is referred to as a “gray” or Gy.  Living on earth, we are exposed to about 3 Gy per year in natural occurences.  Exposure from x-rays and CAT scans can range from .1 to 20 Gy.  The lifetime maximum listed by the NIH is 400 Gy.  By the time all of my 30 treatments finished, in just treatments alone, I had been exposed to 4000 Gy.  In the original plan, I was supposed to get more and without knowing what I know today, I am glad I said “no” then.

The radiation destroys the cancer cell’s DNA and the remnants go through the natural body’s processes.  Unfortunately, good cells are also destroyed.  Risks varied but include cardiac.  Dry mouth, upset stomach, bone pain, and strong fatigue.

Chemotherapy – 8 months

Mustargen = one IV treatment per cycle (cycle = month), 8 cycles completed

     note of interest = highly toxic, kills cancer cells, will reduce white and red blood cells, high risk of blood loss, high risk of infection, used in chemical warfare during World War II and more current wars (Saddam Hussein used it on his people), horrible metalic taste in mouth during the injection, hair loss

Oncovin = one IV treatment per cycle, 8 cycles completed, kills cancer cells, will reduce white blood cells and create a high risk of infections, hair loss

Procarbazine = taken orally during the first week of the cycle, kills cancer cells, will reduce white blood cells, platelets, and red blood cells leading to a high risk of infections and blood loss up to a month after treatment, hair loss

Prednisone = taken orally during the first half of the cycle, will kill some cancer cells, and help to prevent brain swelling, but will also reduce body’s natural ability to defend itself (compromise immunity)

Adriamycin = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells,  increased risk of infections and bleeding, also pulmonary and fatigue issues, hair loss

Bleomycin = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells, but increased risk of pulmonary issues

Vinblastine = one IV treatment given in second week of cycle, 8 cycles completed, kills cancer cells, high risk of infections, and sensativity of skin to sunlight

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