Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

If It Looks Too Good To Be True…


My family has been decimated by cancer. I battled Hodgkin’s Lymphoma 25 years ago. My maternal grandmother died from ovarian cancer following a battle with breast cancer. My paternal grandfather died of complications from lung cancer. And just last week, I lost my father after a bizarre and aggressive battle against lung cancer. I have said goodbye to well over a hundred friends who have had cancer and died.

As if having cancer is not bad enough, sometimes the cure is worse than the cancer itself. I have a list more than a dozen diagnosis of things that have developed in me over the last two decades. And again, dozens of close personal friends who have also developed severe maladies from treatments that were meant to cure patients often leaving them in conditions that are often worse than the cancer itself.

Of course there are the side effects of the treatments.

We are of course a society of hope, that some day cancer can be cured. I know personally that I hope some day better treatments are found that are not as toxic and easier to tolerate.

Which is what makes my post today difficult to write. It happens about once a year, but a blog publishes a post about a major hospital coming clean about the truth about cancer and its treatments. And it “validates” its legitimacy by intentionally misspelling its name, keeping it close enough to fool readers into believing a major conspiracy against cancer patients and survivors. These misspells are common among people on social media sites as to keep from being discovered by people not desired. But in the case of offering medical advice and opinion, this is morally wrong on so many levels.

First, I want to say, I do believe in “alternative” and “complimentary” methods along with the scientifically proven treatments. I stress scientifically proven, because in the grand scheme of things, these are the things that work, or have the best chance of working. Is enough time being spent researching “alternative” or “complimentary” options? Probably not. But this does not mean that those options are bad for people, or even offer hope for those who do not have any hope. I recall the moment my father was told that his cancer had “changed”, and was not considered terminal. There was desperation by many to look for other options for my father, even in the scientific arena in the form of clinical trials. And for those where there may not be any options, perhaps alternative and complimentary options have their place. Especially if they carry the same cure rate and less side effects, short and long term. And I do believe in a strong placebo effect that occurs when a patient simply wills themselves to get better. I would not be here today had it not been for my attitude. But I needed medicine to beat my cancer.

Getting back to this particular blog post, they claim the source is Johns Hopkins, not Johns Hopkins Hospital (prior posts had used John Hopkins Hospital). In any case, the article clearly does not come from a top cancer hospital in the country. But right from the beginning, it can capture anyone’s attention with its opinionated headline “Big Hospital Finally Telling Truth About Cancer” and then without saying which hospital, it throws in a name, Johns Hopkins, which coincidently is the same name of a major cancer hospital. I do want to offer this disclaimer though, I am not a doctor, and I am not necessarily disagreeing with the post. But I do disagree with the motive behind it, which is to push an agenda that while offering hope, is not scientifically proven. The information discussed is not new knowledge to anyone other than newly diagnosed cancer patients.

Items 1 and 2 discuss the fact that we all have cancer cells in us and just how difficult they are to detect. Which is true. In fact, even the most current go-to test to diagnose cancer, is called the PET scan. Yet, this PET scan was unable to detect any additional cancer cells once my father’s surgery was complete, once his chemotherapy was complete, nor when his radiation was complete. These items provide no new discussion, other than cancer’s complexity.

Item three is where things get interesting. Discussion turns to the immune system. One thing that I was told a long time ago, decades, was yes, we all have cancer cells in our bodies. But at some point, there is a “trigger”. Which I do not doubt. In my case, though not scientifically proven, I recall when I was diagnosed, I was under a tremendous amount of stress. One thing if you have to notice about people who are under lots of stress or depressed, they are commonly sick, often more sick than those not under those circumstances. With stress and depression, it is a known fact, your immune system suffers making you susceptible to any number of illnesses, including cancer. Again, nothing new noted here.

Items 4 and 5 refer to nutrition and diet, especially deficiencies. There is not doubt what caused my father’s lung cancer – fifty plus years of smoking. But with my cancer, I do not recall having any diet deficiencies. I will go one better. What dietary deficiencies occur in toddlers that are two and three years old when they are diagnosed with leukiemias or other cancers? I do not doubt that certain foods may help to fight off cancer, and perhaps even cause cancer, just like smoking causes lung cancer. But I just cannot accept that a diagnosis of cancer in a two year old is to be assumed due to dietary cause alone.

Items 6 and 7 discuss how the various treatments work. Basically by destroying the cancer cells (the bad cells). The hard part for a person to hear though, is that because of the toxicity of the treatments, that also means that “good” cells will also be destroyed. Which is why most of our treatments involve some sort of supplemental treatment to boost blood cell counts, or to increase our immunity. Unfortunately, if you want to have a fighting chance against cancer, this is currently our only proven scientific method.

I will not spend much time discussing what the treatments do to the organs, as this is what “Paul’s Heart” is about, and I write plenty of articles about side effects, most recently I wrote a post about “Adriamyacin” and the brutal and potentially fatal effect it can have on the heart. I survived that’s drug, not without some effect, but recently I lost someone very close to me who was not able to overcome that side effect.

Item 8 unfortunately seems to encourage you that once you hear your tumor has shrunk, that is all it will do, not go into remission. This is not true. Look, if you take an antibiotic for an infection, what does the doctor tell you to do? Take the whole course. Researchers were the ones to determine how long to take a medicine for it to be effective to get whatever infection into remission. And when you do not take the medicine for the prescribed time, more than likely it will not go away, or stay away. Chemo and radiation therapies are not different.

Item 9 talks about the effects on the immune system, and is mostly true. But again, if you want a chance at surviving cancer, it is a risk you must take, and then learn to take care of yourself afterwards.

Item 10 is kind of interesting, because while I have never researched the concept of pissing off cancer cells with treatments that they mutate and become resistant, I am open to that discussion.

I had warned my father about undergoing radiation therapy following the completion of his chemotherapy for Stage 4 lung cancer. Though I was against it for the side effect possibilities to his heart and lungs. But strangely, half-way through his radiation treatments, he developed a cough which gradually got worse. By the completion of his radiation, it had been discovered that the cancer had returned (or perhaps redeveloped) and changed from non-small squeamous lung cancer to a sarcoma. He passed away two weeks ago.

Numbers 11 through 16 make clear the website’s agenda, eating healthy and living right. This is a no-brainer whether we have cancer or not. I am finally learning to eat right, but that is not what caused my Hodgkin’s Lymphoma 26 years ago.

We all want a better way to deal with cancer, one that saves everyone’s lives. We all want a way to prevent cancer. And I am extremely disappointed that since the time I made my first donation to a cancer fundraiser, more than forty years ago, we have not cured all cancers 100%. More research is needed. But I have to disagree with the method of dealing with cancer, that this hoax clearly tries to represent.

A Tribute To My Dad


There are not many people that I have admired over the years on either a personal or historical level. In fact, I can count them all on less than one hand. But one person that I can say I admire the most of all, is my Father. He was born in the 1940’s, did not finish high school (common back in those days), was married with two children, a boy and a girl, and divorced. He would eventually marry a second time expanding the size of his family by double as far as children, get to experience more than a dozen grandchildren and even great grandchildren.

His riches and wealth in his family were what mattered to him most. To my knowledge, up until the day he retired from his most recent full time job just a few years ago, the best salary he had ever seen was just over a mere $22,000. He had a modest home with his wife and a simple compact car. But to him, he had everything.

Because of the divorce at my young age, I never had the chance to really know or spend time with my father. And I missed a lot. He missed a lot too and he knew this. But early in my 20’s, when he decided to marry my stepmother (a formality because in Pennsylvania, they were already common law), my father reached out to me, to make amends. We both recognized that a lot of time had passed, but also knew that it could not be replaced. But from that moment, we started a new relationship and built on that start every day.

Typically, those on the paternal side of my family do not get to live long lives. The inside joke is if you are over 55 and it is Christmas time, you need to make sure you have your will made. But my father did what many of his siblings and parents could not do, he saw his 70th birthday this year. It was a goal that meant much to him. Unfortunately, cancer would overshadow this milestone. My father actually made a comment in his last days that he was 59. And the truth is, he believed it. Perhaps subliminally, he believed it because perhaps recognizing he was 70, and having cancer, he did not want to face the possibility of his mortality.

But his cancer was not the only challenging time of his life. Really, for someone who led such a simple life, he was faced with so many tragedies and crisis, more than anyone should have to experience in one family. His son (me) diagnosed with cancer. His mother dying from cancer, as well as his father. And perhaps the most challenging events of his life occurred one fateful night in December just before Christmas.

My father and stepmother were having an argument about one issue, while having to do some last minute Christmas shopping. They left their house separately, clearly aggravated. My father had left first, walked across the street to his car, then look out his window to see my stepmother crossing the street herself. It was dusk, and neither she, nor the driver saw each other. My father witnessed the accident and blamed himself for the rest of his life, over two decades.

During these decades that he cared for my stepmother, not once did he ever consider placing her into a nursing home. He took “in sickness and in health” to the extreme by staying by her side, concerned about her care up to his dying days, “promise me Shirley will be taken care of.”

When they time came that his health became too much for him to care for her, let alone himself, a decision had to be made. And after forty something years, it looked like for the first time, they would be separate permanently. Some eleventh hour efforts by some county officials, and we were able to arrange for both of them to be placed into the same nursing home. My father got to see that my stepmother was in great hands and care. Over the next two months, he was able to witness just how well she would thrive in the home after he was gone. However, due to the spreading of the cancer to his brain, he remembered only one thing that mattered, he was the one who took care of her. And up until a few weeks ago, he still tried his best to do so.

In a scene that could have well come from “The Notebook”, Shirley was by my father side, holding his hand, letting him know that she would be fine. A week ago, my father passed away. He was a great and honorable man, someone I will always admire.

I miss you Dad.

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