Paul's Heart

Life As A Dad, And A Survivor

Thank A Survivor


The following is a speech that I just gave at a local Relay For Life event where I was being recognized as their 2015 Honorary Cancer Survivor.  I want to thank fellow survivors who helped me prepare this speech with their input and feelings that they felt should be expressed to current patients and survivors.

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I think we will all agree that 25 years of surviving cancer is a pretty big deal. But what you may find hard to believe, up until I hit this particular anniversary, I have never given myself credit for surviving cancer this long.

You see, I battle an issue called “survivor’s guilt.” Yes, that means exactly what it says. I have walked through these 25 years wondering why I have gotten to survive my cancer, while so many either do not, or face recurrences or new cancers. Do not mistake my gratitude, I have a lot to be grateful for, including two beautiful young daughters. But having gone through cancer in a time period when survival was based on a “five year survival rate” plan, I have wondered ever since “why me?”

Tonight, I finally give myself a break. And instead I ask myself, “why not me?”

It has been a long time coming to get to this realization, and it is because of our Naples Relay For Life Survivor Committee Chairwoman, Olyvia Eldridge, that I wrote this particular speech this evening. Olyvia, by showing this survivor what has been done for him, I realize that being a survivor is not just about being a visible statistic to other cancer patients and survivors. Being a survivor means supporting other patients and survivors.

So tonight, I want to draw your attention to the hundreds of cancer survivors here this evening, and by survivors, that also includes patients either just diagnosed or going through treatment. Now with a show of hands, how many have survived cancer since at least 2005?

Take a good look around you. No, take a long and lasting look. With the theme of this year’s Relay being “Wish Upon A Cure,” I have but one wish tonight. And even if you are not spending the entire night with us, you can make my wish tonight come true.

The Relay For Life is about raising funds to not only find cures for cancers, but to find better and safer treatments and follow up care. And while your role in this process is so very important, as is the scientists who look for those cures, it is the long term survivors like those of us here this evening that I would like you all to just take a few moments, and not only tell them that one day you hope to be a survivor like them, but to thank them for the care and treatments that are available to you today.

Our treatments just a couple of decades ago, were quite harsh. And as we have survived all these years later, medicine has realized something very important. That while every cancer patient just wants to be done with cancer with that final treatment, to survive cancer long term, you are not the only one who needs to take care of yourself, but doctors have recognized a need to follow patients for the rest of our lives, even for the slightest of late developing side effects, so that years after having beaten cancer, you no longer face the possibilities like myself and so many others have had to face.  Because of those of who have survived cancer for so long, protocols have been written, and rewritten, and rewritten, and doctors have expanded their medical orientation from cure to now what is going to be the quality of life for a patient in 10, 25, 50 years and beyond. Because of us, doctors will now take better care of you, following your treatment for cancer. Screenings for certain issues occur annually or longer if possible, but issues are dealt with sooner than later. And as any cancer patient knows all too well, the sooner and quicker dealt with, the better. And because we are now followed up more closely, and yes, for the rest of our lives, we actually have an advantage over the average healthy person because issues are discovered before they become symptomatic.

If you spend time with one of us this evening, getting to know what it has been like for us to live post-cancer, without the care that you will now be getting, and to understand just how important this new protocol is to you, and believe that you too, will someday be a long term cancer survivor like myself, and so many others.

This is the legacy my generations of survivors have left behind. And I have faith that you will further build upon that foundation and with the help of advances in drug and immunological research, we will all someday hear those words, “you are in remission.”

I began my life as a survivor 25 years ago. I began my support as a survivor and caregiver 25 years ago. I began my advocacy for cancer patients and survivors 7 years ago, when it became known to me, that long term survivors were having health issues that were not being followed up properly. And I became a patient advocate a little over a year ago, when a dear friend lost his life, for the lack of a simple protocol during cancer treatments with a drug known to have the potential for serious side effects.

Tonight, my team, “Michael’s March”, in memory of Michael Scheidemann will walk this year’s Relay. Each hour, I personally, will walk and dedicate an hour to a cancer patient or survivor who has had an impact on my survivorship, and will write their name on the front of this t-shirt. And I invite each and every one of you, to follow me throughout the night, and write your name on the shirt as well.

In closing, as I always do, I offer these words to you…

“As I go down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if you are not on that highway, hurry up. Because once you get on that road, it’s a great ride.”

Two Reasons I Do Not Like Mid-April


I think it was Ben Franklin who stated, “only two things in life are guaranteed, death and taxes.”  Of course I am paraphrasing.  But in April of 2008,  I almost proved Ben correct.

I want to indulge this post, because I am preparing for our local Relay For Life, and will not be able to post this “anniversary” post.

On the day after the deadline to file income taxes, I underwent a nuclear stress test, which had nothing to do with the tax preparation or results for the record.  I was dealing with annoying chest tightness, and my family physician of nearly forever recommended the test based on my history of having had cancer as well as other biological health issues.

Now rather than repeat the entire story, you can check out the page “CABG – Not Just  A Green Leafy Vegetable” for everything that happened by the detail.  But long story short, 36 hours later I would end up having emergency heart bypass surgery.  The cause of the blood restriction to my heart was the real shock, because up until that point, there was no reason to be concerned about cardiac issues.

The main artery to my heart had been so badly scarred from radiation damage during the period I was treated for my Hodgin’s Disease.  That was just the first discovery of many, that would now become my current world of long term cancer survivorship.

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A week later, I was sent home, along with my “heart” pillow to help provide comfort for my very tender breast bone area.  I would make my first phone call to Memorial Sloan Kettering to begin what should have been done eighteen years earlier, post treatment care.

By now, almost every area of my body has been checked for late developing side effects caused by either my diagnostic methods, or chemo and radiation treatments.  The list of diagnosis of serious issues are more than a dozen long.  For now, doctors concentrate on the major and potential life-threatening issues:  cardiac, pulmonary, immunological, gastrointestinal, neurological, muscular, and orthopedic, and of course psychological.

It is one thing to have beaten cancer, but it is another to have to deal with permanent issues that medicine had no idea they would be dealing with, once cancer patients would begin to live regularly past the magical five year mark.

This post is not about dealing with all those issues.  No, I want this post to be positive.  This year marks the 7th anniversary since I had my double CABG.  And as I have pictured above, there are only two reasons I got through that procedure and the reason I am still around today.

Behind The Scenes


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I was watching one of my favorite action thrillers the other day, Swordfish, starring Hugh Jackman, John Travolta, Halle Berry, and Don Cheadle.  It is a movie about a father, who happens to be one of the best computer hackers, wanted by Travolta’s character to create a computer “worm” of devastating proportions.  While that is the main story line, how Travolta lures Jackman, a federally convicted hacker to cooperating, is by promising Jackman the only thing that matters to him.

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Berry’s character mentions the name of Jackman’s daughter in the movie, “Holly”, and sensing that she is in danger, he calls his ex-wife “Mel” to ask to talk to his daughter.  But a judge ruled that he was to have no contact with his daughter, and the ex-wife is more than happy to oblige the judge, and instead unleashes a torrent of ugliness and shame directed at “Stan” and stating that his daughter wants nothing to do with him.

Now, so far, this does not seem like that far of a stretch for how “dads” are portrayed in these situations.

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But what happens next is what is usually not portrayed.  “Stan” decides to take up Travolta’s offer which of course will take care of all the requirements to lift the judge’s orders.  In his excitement, he decides to try to see his daughter, although clearly violating a court’s order, so that he can tell her the good news.  Keep in mind, his ex-wife has been telling him that “Holly” wants nothing to do with him, and all other kinds of bad things.

“Holly” is in the process of calling a taxi, because her mother is passed out drunk and has forgotten to pick her up from school.  “Stan” without being noticed, simply asks, “need a ride?”  “Holly” recognizing her father, excitedly jumps up and runs into her father’s arms for a huge hug.  Clearly, not feeling about her father, the way that “Mel” portrayed.

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This is a portrayal in the movies that is rarely seen.  And  I would argue, is far more common than is really known.  It is called “parental alienation.”

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This behavior is heinous, harmful, and many times, irreversible.  One parent is delusional in thinking that they can convince their child to hate the other parent, who has clearly done nothing to the child other than be the loving parent they have ever known.  This is purely only an attempt at revenge for taking away the “perfect” world that parent believes they were entitled to, regardless how destructive the marriage had become.  The other parent “needs to pay.”

Making the non-custodial parent feel guilt about the absence from the child’s life, attacking the character of the other parent, not recognizing efforts by the non-custodial parent to correct and deal with certain situations are hard enough, without drawing the children into it.  But what a custodial parent believes is the right and entitled thing to do, while being successful in penalizing the non-custodial parent, it will, and I emphasize WILL come at the expense of any child drawn into the middle of the battle between the parents.

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By pitting a child against the non-custodial parent, the custodial parent has done irreparable damage to the non-custodial parent (which does not matter to the custodial parent), but also does the damage to the child.  Taking time away from the memories that should have been shared, and can never be gotten back, will cause extreme resentment by the child.  While the custodial parent believes that the child will hate the other parent, it will actually be the other way around, because some day, the child will figure out on their own, the truth what happened why the other parent had no other choice but to be absent.  And because that custodial parent took that away from the child, the child will hate that custodial parent.  And now the relationships with both parents have been destroyed.  This is not the fault of the parent trying to do the correct things just to be a part of their child’s life.

This issue is not gender sensitive either.  Just because it is a daughter does not mean that she will not hate her mother, or a son hate his father.  The fact is, it will happen.  This legal issues that keep a non-custodial parent from their child,  can be resolved at some point, if allowed.  But when a parent chooses parental alienation by bad-mouthing the other parent to the child, playing head games with the other parent for psychological gain, and the time and memories lost forever, cannot be replaced.

But then again, this is something that you will rarely see shown on TV or in the movies.  It is more popular to enrage emotions against a villain rather to show compassion for a situation that no one truly knows everything that is going on.

I like “Swordfish” for another reason now besides the action thriller it is.

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