Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

My “Ford Pinto”


I am going real retro for this story. But then again, as a long term survivor, the comparison I am about to make, makes sense. I have a co-worker who routinely likes to tell me the phrase, “congratulations on your new Ford Pinto”. I do not think he is old enough to even know what a Ford Pinto really was, but I do know what the Pinto was. So when he mentions that expression to me, just as I am about to deal with an unpleasant situation, I know the situation is not going to be good. Neither was the Ford Pinto.

The Ford Pinto dominated the 1970’s and was marketed as a 2-door sedan. But the selling point, was the hatch back. Ford’s creation competed with other manufacturers who used the hatch back design. It had one flaw in it, a major one. There was a huge risk of the fuel tank rupturing with a rear end collision discovered half way into the decade. The tank would rupture and the car would go up in flames, leading to the Pinto being one of the worst cars ever made.

There are times when I feel like a Ford Pinto. Just like the car when it was designed, on paper, everything looked perfect. The car would compete with the AMC Pacer or the Chevrolet Vega. Production occurred, people bought, cars erupted in flames.

On paper, just as many other cancer survivors who underwent cancer treatments back in the 1950’s, 1960’s, 1970’s, 1980’s, 1990’s, the treatments were supposed to lead to a cure. Treatments were not going to be easy to tolerate due to side effects – the common ones, nausea and hair loss – but for the time the treatments were used, they offered the most hope.

I am sure my story is no different from those back in the other decades. I was treated at the end of the 1980’s. My side effects for treatment of Hodgkin’s Lymphoma were all that I was told. I should say, short term side effects. You see, in my file as I would discover just a few years ago, there was mention of late term side effects. I had only two to worry about from my treatments, a secondary cancer such as leukemia, or pericarditis – an inflammation of the lining around the heart. That is all (yes… those two things alone are bad enough).

But as Maxwell Smart of the television show “Get Smart” used to say, “missed it by that much,” viewer knew it was not even close. Here is what my doctors missed “by that much” in my case:

coronary artery scarring (led to my double bypass six years ago)
heart valve disease
carotid artery disease
restrictive lung disease
facet joint arthritis
osteopenia
radiation fibrosis syndrome
hypothyroidism
Barret’s Esophagus (pre-cancer of the esophagus)
drooping head syndrome
muscle loss and what is left, muscle atrophy
compromised immune system
post traumatic stress disorder

There are more, but these are the things that are on my annual radar to be followed up on closely as they have the biggest potential impact.

Now, had I been told back in 1988 that I would have been at risk for all those things listed above, I do not know that I would have made the decision to go ahead with the treatments. I have been lucky. I know many who have far worse diagnosis than I do. I am lucky to have one of the top hospitals in the country monitoring and managing my issues. There are too many in our country, and the world who do not even know they are dealing with issues like mine or worse. Instead, they go to a doctor, voice their ails, only to be told their symptoms do not make sense and instead of the doctors ordering the proper tests to determine the cause, survivors are left to feel as if they are hypochondriacs or just all about the drama.

The late side effects that I developed, and so many others developed are very real. As real as the owners of many Ford Pintos found out that their cars could explode when it was too late, the same goes for us who were exposed to radiation levels four times the lifetime maximum exposure, or injected with a drug used by dictators to kill thousands of their own people. I was exposed to both of those issues not to mention other effects from pre-diagnostic surgeries or the other drugs used in my chemotherapy cocktail.

Sure, the Ford Pinto was, and if some people still own any, a cute car to look at. And to look at me, you would not be able to tell “my fuel tank was capable of rupture”.

I wish that after all the years had gone by since my treatment days, that more than just “curing a lot of cancers” had taken place, and more than just getting to the point of curing all cancers, but finding safer ways to do it.

Ladies and gentlemen, I am a “Ford Pinto.”

Post #300


I am never going to produce a major blockbuster movie like “300”. Nor will I ever have an opportunity to hit 300 homeruns. In fact the closest I have ever come to achieving 300 of anything would have been a perfect game in bowling back in my late 20’s. I threw strikes in the first nine frames, and then tapped a ten-pin, spared it, then completed the game with another strike in the 11th frame.

With my blog, I am finally achieving a 300, my 300th post on “Paul’s Heart.” My posts are at over 8000 views and the comments of support and appreciation are numerous. This is a big deal for me, but pales in comparison into the week ahead that I am going to have.

Next weekend, Father’s Day weekend, I will be memorializing my father who passed away three weeks ago. After discussing it with my siblings, we felt it was an appropriate tribute to our father. Just as many who have gone through such a personal loss, I am sure that you can understand the struggle to deal with “the first Father’s Day without my father.”

At the same time, it is Father’s Day weekend, something that I have always looked forward to since before I adopted my daughters. Besides the emotional toll of my father’s memorial to deal with, this will be the first Father’s Day for me with just my daughters. Due to the recent custody agreement I made with their mother, and my father’s passing, I have not been able to see them in a long time, the longest time apart.

I speak to my daughters every day, and on a couple of occasions I have been able to see my daughters courtesy of Facetime. I will get to spend the entire weekend with them, and I have a lot of activities planned with them. But next weekend will not be just about me. Every day I have thought about the hurt and confusion that my daughters must have. Which is why I will pull out all the stops to show them next weekend that the divorce does not change who their mother is, or who their father is. It is important to me to make sure that my children do not blame themselves for the divorce, that the divorce was an issue between just their mother and I.

The girls get to do a lot of fun things with their mother, and next weekend, I cannot wait to spend time with them.

My story is not unique, as there are probably thousands of other dads who have a similar story heading into next weekend. My parents divorced when I was young. So I have the perspective from both child and parent.

Next weekend is not about quantity, but rather the quality of the time that I get with my daughters.

Handicapped… Or Handicapable


Three months following my open heart surgery, caused by damage from radiation therapy for my Hodgkin’s Lymphoma decades ago, I took the family to the New Jersey shore for a weekend getaway as part of my recovery before returning back to work. We were going to take our children to the amusement pier for the evening. My daughters are fond of carousels. In fact, I have photos of my daughters on every carousel they have ever ridden. With both girls under the age of five, both their mother and I rode with them.

As we approached the entrance gate to the ride, there was the measuring stick for children who rode solo without their parents to make sure they were tall enough and next to that was a white placard. On the placard was a huge red circle with a heart shaped symbol and a big line drawn through it.

In my younger days, I operated rides in our local amusement park, so the “heart condition” sign should not have been a shock to me. I know the adrenaline rush that occurs with a ride, so I was not anticipating riding on any kind of thrill ride. I was prepared for that. But this was a carousel, the tamest of rides.

Now I know the likelihood of any cardiac event taking place on a carousel, but seeing the cardiac warning sign hit me like a slap to the face. My heart sank. Was it possible that I was never going to get to do one of the things that I truly enjoyed in life, riding amusement rides with my daughters?

Six years later, unless you happen to catch me with my shirt off, which does not happen often in public, to look at me, you will never notice anything wrong with me just by looking at me. I do a very good job at hiding the late side effects that I deal with, so good, that even my doctors get fooled that I have actually been diagnosed with cardiac disease, pulmonary disease, muscular-skeletal issues, immunity issues. But they will all confirm, those diagnosis do exist. So seeing over a dozen specialist at one of the top hospitals in the country, Memorial Sloan Kettering, I have a label that is buried deep inside my conscience. I am disabled, handicapped, like it or not.

My doctors agree that I do not appear the typical Hodgkin’s survivor. From the day of my cancer diagnosis to today, I have never thought of myself anything less than a fully functional human being. True, I may not have the strength, ability, agility, flexibility, that I once had, that the average healthy person may have, but I am still fully functional. I do not consider myself handicapped, I will not even use the word. But I am learning to accept the word “handicapable.” With restrictions, dictated by my doctors, I am a fully functional human being.

I do have a handicap parking placard for my car, but it rarely is used except in situation of extreme heat and humidity (difficult for breathing) or if I happen to be carrying something heavy. Other than that, you will never see me use it. As an employee, I put in an eight hour day taking the same breaks as others who have nothing wrong with them. The truth is, I do not know if anyone else is dealing with any health issue, just as with my appearance, most have no idea about me.

I remain a good employee, committed to my efforts in any task that I take on. Unfortunately, to the dismay of my doctors and loved ones, I am too hard on myself to allow anyone to help me with physical challenges. As a cancer survivor, especially one dealing with late effects like me, we carry enough on our consciences without having the burden placed on us, that we feel we have to rely on others for assistance. At least that is how I feel.

Unfortunately, my body does not show that mercy to me. If I do happen to push too hard, it has a very rude way of letting me know that I have done too much, like when I had to have my open heart surgery, or two battles with septic and double pneumonia. I have learned more to listen to my body. Sure, sometimes my coworkers do not like that, some may even feel that I do not do my share. But I would challenge anyone to wear my size 9 1/2 shoes for just one day.

I do not look for pity. I have given up looking for understanding. But I do know the difference. I am not handicapped. I am handicapable.

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