Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

Understanding The Long Term Cancer Survivor


These are facts. A diagnosis of cancer is no longer an automatic death sentence in most cases. Cancer patients who reach remission, often live longer than five years (a survivor mark established by medicine and hoped for by patients). Treatments used long ago were never fully researched for long term side effects for patients who lived longer than those five years. Once these late effects were discovered, medicine still did not educate doctors, current and future, about late effects leaving millions of cancer survivors to struggle to receive care for mysterious ailments that did not coincide with their age or circumstance.

This is opinion. Once a cancer survivor is recognized with having to deal with late side effects, it is often difficult to convince family members that the effects are real, and irreversible. Employers often look at survivors who complain about their discomforts as simply trying to get out of work. Worse yet, those employers with their own disability management department often argue that an absence, due to those late effects cannot possibly be proven that the two are related in an attempt to reprimand the employee.

These are just a few of the circumstances that I have come across where people just do not get, what it means to be a cancer survivor and have to deal with the treatment side effects that cured us, now hinder, cripple, or kill us. But just when I thought I had dealt with all areas of my life with this issue, another hit came from another direction.

Earlier this week, I had a hearing pertaining to my divorce in regards to support. I am not going into the details of the hearing other than to express yet another example of how society is not yet ready or able to recognize those of us who have been fortunate to beat cancer, and live a long productive life.

During the hearing, the Master (taking the role of the judge for this hearing) was questioning my current absence from work and instead turned it around into why I was leaving my job. There are several circumstances with this issue. For the last many years, I have had several restrictions placed to protect my health in the workplace. And with the backing of the American With Disabilities Act, my employer not only had to, but was willing to meet and honor those restrictions because there was a job assignment that I was able to complete on a daily basis. And I have been doing that job for many years without any issue.

This year however, as many corporations are known to do, my employer decided to close the building that I work in. As this process takes place, work inside my building has dwindled leading to the elimination of the job I have been doing. Instead now, I am placed into a general work assignment pool, where my restrictions now affect my position, leaving me basically unable to do more than 90% of the work. This is not my choice and I had to convince the jurist of this, along with the fact that my medical issues of survival are not only very real, but also severe in nature, and not reversible. My attorney then handed the jurist about ten pages of my medical history as evidence of my health issues. I am not sure how well that will go since many medical practitioners do not understand the health of a long term cancer survivor, how will a jurist? But that is exactly who will decide my fate.

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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