Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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 Long Day…A Long Night…A Long Day…And So On


If you asked me fourteen years ago, where I thought I would be today, never in my wildest dreams would I have thought at this very moment. As I got the phone call this morning, my father’s ill health from lung cancer had taken a noticeable turn worse and family was now being called in to his bedside, I was preparing for another major event in my life just as pressing, a custody battle in court tomorrow morning.

As my ex-wife to be fond of criticizing me for, being unable to balance between the needs of my dying father, and my daughters, instead of being able to deal with the important event at the moment, my father’s last breath, because we have not been able to come to terms with each other in regards to custody, I will leave my father’s bedside in the morning, to deal with this issue in court, something that she openly said she would do.

Everyone was here at the nursing home when I had arrived. Hospice had been called in to verify that everything was being done to keep my father comfortable and to see if anything could be done for family members to help us during our time of grief. For the most part, my father has kept his eyes closed, occasionally murmuring some unintelligible noises.

Today, I had to forget about what I had to deal with in court tomorrow, as important as being able to spend time with my daughters is to me. There is no way to know, how many more moments I will have with my father. My sister and brother are here, and many visitors have decided to come in today upon the news that my father may be on his way home to his father, and brothers and sisters.

I pulled out my cell phone to play a video clip from a few weeks ago. I taped my oldest daughter singing “God Bless America” for my father. She was rehearsing for a school performance at the Wells Fargo Center in Philly for a professional hockey game. But it was a moment that I will never forget because of the hugs smile it gave my father, in the darkest of times. I placed the phone to his ear, and you could see twitches deep below the pale, dry skin. He could hear Madison sing and I knew he liked it.

Then it occurred to me, that in all my years of singing, I realized my father had only heard me sing once, a long time ago and a song had come to mind, one that meant a lot to me, and I had hoped for him as well. The night before I mentioned to him that I was so proud to be his son. That he should be proud of who I am, I am the man I am today because of him. He mumbled that he wished he could have done more. And I assured him that he had done plenty.

So this evening I sang the beautiful song to him about a relationship between a father and his son. My parents divorced when I was very young, so I did not get to have the stereotypical relationship with him, but in spite of that, I turned out a lot like him anyway. I sang “Cats In The Cradle” by Harry Chapin. I got choked up often through the song, and what was only a three minute song, took me seven minutes to get through it. But as my sister and stepmother sat in the background, I could see again, my father’s reactions to my voice.

And again, I told my father, it was okay. It was okay to go see his dad. We would take care of his wife until it was her time to reunite with him. It was okay to go see his brothers and sisters. We would miss him a lot, but we know we would see him again some day.

It is all quiet now in the nursing home. There are no bed alarms going off, and in fact, half of the building is now dimly lit. My stepmother is in the room with my father for the night as she wished.

But now, I am preparing for my custody hearing, that I will now have to leave my father’s bedside to attend. Hopefully it will not go long as I feel I have offered a more than fair offer. But had she agreed to it, we would not have to meet yet tomorrow morning.

Make no mistake, my daughters are the most important thing in my life. And it has been the hardest thing in the world to not have the support of my ex-wife, under these circumstances to be understanding that the time that I have been spending with my father in his dying days has been just as important. I will not have many more days with him.

First Impressions


Just how important is a first impression? For a job interview? Very. For a blind date? Very. But how about entering one of the largest cancer hospitals in the country? Yes, it first impressions are very important.

The very first thing you see as you enter the outpatient facility of Memorial Sloan Kettering Cancer Center on Lexington Avenue in Manhattan is the concierge desk. And behind that desk is an angel like no other you can imagine. No, this angel has no wings, and is actually quite large, a man the size of a pro football player (this is my perspective as I only stand 5’7″). But unlike the aggressive football player, this giant is gentle.

His name is Nick. To many of us patients who visit MSKCC, he is known to us as “the Ambassador”. And he greets everyone as enthusiastically as the person before you, and after you. His initial greeting helps to put everyone at ease as they enter a very scary phase of their life, otherwise you would not be there. Nick offers encouragement, hope, and support to everyone he meets.

He is quite busy as he travels between MSKCC sites. I have often joked with his associates when he is not there, because MSKCC had other plans for him that day, that the hospital underestimates the value and importance of seeing Nick when we walk through the door.

I have known Nick for over six years now. He knows plenty about me, just as the thousands of others who have gone through those front doors. And now my visits include him asking about my father, battling his own cancer.

Nick is a very special man, and I will do everything I can to get him the recognition he truly deserves for making a difference in not only my life, but everyone he comes in contact.

Tonight, ABC News aired a special story on Nick. I am including the link below. Enjoy.

http://abcnews.go.com/WNT/video/meet-nick-hugger-healer-23462925

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