Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

If She Could Only Have Seen What I Saw


I was driving through the city, and while at a red light, I looked around the intersection, and in the car immediate to my left, in the turn lane, was a woman in a very fancy car.  She was lighting a new cigarette, with the one that she was just finishing.

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Everyone has seen this method of lighting a cigarette at one time or another.  It is called “chain smoking.”  It is more than just about an inconvenience of not having a lighter or a match.  It is just another example of how addicting and controlling ANY kind of tobacco/vapor product is.

But as the light remained red for a longer time than anticipated, I glanced back over at her car.  I saw how bad her smoking habit really was.  She literally was inhaling and exhaling her cigarette, unlike those who normally inhale and exhale, hold the cigarette aside for all of us to inhale the second hand poison.  She was actually breathing with her cigarette.  I have never seen this extreme in my life.  And it definitely cannot be attributed to her trying to get as much inhaled cancer as she can for her money.  Smoking is not about getting your money’s worth, it is about addiction and compulsion.

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I immediately begin to think about something my father said to me, “had I known I would end up with cancer, and be told I was going to die from lung cancer, I would never have started.”  Famous last words from someone who smoked for over fifty years.  My father passed away from lung cancer last May.  But it was what was discovered prior to his passing, that was even more disappointing.  I say disappointing and not “shocking” because nothing surprises me anymore when it comes to the control that tobacco and the tobacco companies put into their products to get a person addicted.  And when a business like this only cares about profit, face it, a healthy person does not keep tobacco in business.

I cannot count how many times my father had tried to quit smoking.  I do know that he tried everything from hypnosis, to the patch, to the gum.  Even when believing it was all about the holding an object in the hand, and placing it in the mouth, he could not even fix the trick with carrots.  He would eventually find his way back to the pack.

Oddly enough, just a couple of years ago, he had been diagnosed with emphysema.  But the pulmonologist told him, that there was the chance that my father could reduce the effects if he quit smoking.  Unfortunately, my father could not.  He tried.  And I do not blame him for continuing.  I blame the tobacco company.  They know what they are doing with the products they sell.

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But then the following year, when he was diagnosed with lung cancer, and actually had half of his lung removed, everyone thought, including my father, that this would finally be the moment that he would quit smoking as his doctor strongly recommended.  While my father was in the hospital recovering, family went through a painstaking process of de-smoking his house.  You know that smell when you walk into someone’s house who is a smoker.  It is a powerful smell, that non-smokers are definitely sensitive to, but also, so are former smokers.  It was hoped that by being in the hospital for a week, obviously not being able to have a cigarette, the urge would be gone, or at least not as bad.  The doctors would prescribes meds for him to help get him by the rest of the withdrawal.

As time went on, and into the new year last year, my father’s cancer got worse instead of better.  My father went from stage 1 cancer and just surgery, to doing chemo preventatively, to being full blown stage 4 following radiation.  In late February my father was told he was terminal.

As we prepared for my father’s eventual passing, my brother began to get things in order with our father’s house.  It was during this time, that my brother made a very disappointing discovery.  My father had become very good at hiding his habit, which he obviously continued until his final admission into the hospital.  And further discussions with his home care staff, we would find out that he was indeed still smoking.

Getting back to the driver next to me, she appeared to be close to my age and I began to think how sad it was that she was clearly going to end up worse than my father.  At least with him, I never saw him light one cigarette after another or inhale them like she was.

But I also could not help recalling another time, I tried to help a friend quit smoking.  She did not seem like it was going to be a big problem, a self-proclaimed “social smoker.”  Working a ten hour day and not being able to smoke during that time, pretty much supported that thought, until I saw otherwise.

As mentioned, she did not smoke during working hours, so that amounted to approximately 10 hours a day.  But as we soon found out, while purchasing “the patch” for her, she was going to be purchasing the wrong strength because she was completely unaware of how much she actually smoked.  I knew she purchased a pack of cigarettes nearly every other day, close to every day.  And she did not share her cigarettes with anyone, so only she was smoking all of them.

After a conversation, we discovered how many her “3 or 4” a day actually turned out to be:

2 back to back after waking in the morning

1 on the way into work

none during the work hours

2 back to back right after work

1 just prior to supper

1 right after supper

1 an hour later

1 another hour later

2 back to back just before going to bed

That is what we were able to track.  Then there were the social situations.  With her, the addiction actually got to a compulsion by making her “make up” for lost time not smoking.  While she was successful in quitting for eight years, she resumed.

Today, with all the regulations and information on tobacco use, the tobacco companies still do not care that they are knowingly killing people with this addiction.  However now, to deal with all the tougher rules, “vaping” is now being pushed as a safer alternative to lit cigarettes which makes about as much sense as saying a 22-caliber bullet is less lethal than an armor-piercing shell.  The addictive additives are still in the product.  And as someone who not only lost a relative to lung cancer, but I have pulmonary issues myself because of damage from my cancer treatments, you are only supposed to inhale oxygen into your lungs.  Not water.  Not food.  Not auto exhaust or paint fumes.  And definitely not vapor (vapor is a gaseous form of water).

Tobacco companies cannot advertise their products on television or radio because of how deadly they are.  But the new electronic cigarettes are not regulated.  So before they can be regulated for the lethal results, you cannot listen to a radio station without hearing at least once an hour, an advertisement claiming reasons you should be vaping… made in the USA, tastes like the flavors they are advertised such as favorite candies and fruits.  The companies want you to believe there is no harm from their products just like their lit tobacco products.

Tell that to my dad.  I could not convince him.

The Beauty Of Surviving Cancer


Yesterday afternoon, I gave a cancer survivor speech I titled “The Beauty Of Surviving Cancer” for a special Garden Party filled with cancer survivors.  The speech is actually a continuation of the speech that I gave a few weeks ago.  You can find that transcript on March 10 in the archives under the title “Defeating Cancer As A Team.”

Below is the transcript of my speech “The Beauty Of Surviving Cancer.”

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“I could not think of a better place to be celebrating the beauty of cancer survivorship than here, at this event at Moorings Park. That’s right, I said, the beauty of cancer survivorship.

From the moment we hear the words, “you have cancer,” it is all we can think about. “I want to survive.” And we trust everyone involved with our care, to make sure that it happens. A beautiful sentence, “I want to survive.” The ultimate fist-shaking of defiance at something so ugly.

The time from diagnosis to treatment, to hearing the beautiful words, “you are in remission,” seem to take forever. But nothing is more beautiful than remission being forever.

I am still young to be thinking about forever. But I have been in remission of Hodgkin’s Lymphoma for over 25 years. And that, is a beautiful thing.

I got the phone call while sitting at my desk at work. It was kind of ironic because although I had hoped to share the news that I was anticipating with my family, it was my employer who first heard that I was diagnosed with cancer, and he would be the first to find out, that I was in remission. I recognized the telephone number in the caller ID as my oncologist. And although I was expecting the call, and was quite excited to get great news, I actually froze at first, thinking about the what-ifs. And then I answered the phone, and I heard, “you are in remission Paul.” Beautiful. Again I found myself in a frozen state with my left arm whose hand was holding phone, slowly falling from my ear. I did it. I should be doing backflips. This was great news. And then the wave of emotions crashed over me. I did do it. I beat cancer. It took everything I had, but I did it!

Just then, right on cue, my boss came out of his office, not that he was eavesdropping, but seeing the reaction on my face, he knew right then and there, the phone call that I got, and that it was good news. And I thanked him for being there from the beginning to the end of this process.

Since then, I have enjoyed nothing less than the beauty of surviving cancer.

I have the beauty of celebrating a new birthday every year. While my birth certificate states my birthday as being December 19, 196… in reality, I recognize my new birthday as March 3, 1990 which meant that I just turned 25 years old.

I want to tell you about the beauty of progress in the world of cancer. Yes, we still have a long way to go, but in just 25 years, which nearly everyone present has been alive in their lifetime, diagnostics, treatments, follow up care, and survival rates have improved. Think about all the people before us who witnessed the discovery of the lightbulb, the toaster, and a cure for polio, in our lifetime, you have been witness to progress in the battle against cancer. In just 25 years, most of the methods used to diagnose my Hodgkin’s Lymphoma are no longer used. In just 25 years, the toxic and horrific treatments I was subjected are no longer used. And twenty five years later, I am still here to see even newer progress being made. And that is beautiful.

The beauty of cancer survivorship is getting to experience so many things that at one time, cancer patients would have never had the opportunity to experience.

There has been the beauty of parenthood. I was told that I could never become a parent because the chemotherapy treatments that I had, left me unable to have biological children. But just as all good things come to those who wait, I became a father not once, but twice, to two beautiful little girls, that only half-way through my survivorship, I was able to adopt my daughters and become the father I had always wanted to be.

I had a wonderful fur friend for nearly fifteen years of my survivorship, a golden retriever named Pollo, or as many knew him, as the “happy Golden” because of a smile that never left his face, and his tail that would just not stop wagging.

I made it a point that I was finally going to make sure that life counted. If I wanted something, or wanted to do something, or go somewhere, I was going to make it happen. It may not have been easy, but neither was fighting cancer. But I did that. I have gotten travel to beautiful places, and I currently live in a place nicknamed “Paradise”, Naples.

Another beauty of survivorship is meeting other survivors. And over my last 25 years, I have met hundreds and hundreds of other survivors. But as the Relay Survivor Committee has stated, a cancer patient is a survivor from the moment they are diagnosed. And as I wrote this speech, I thought about that concept. Because to be a survivor of anything, I feel “surviving” implies that you took on a fight. And while the circumstances may be different from what we refer to as a “surviving” event such as a natural disaster or travel accident, surviving a deadly disease is not any different. From the moment it occurs, we want to survive.

I have two examples that have made me a believer in the committee’s statement. The first, is a young man, who proclaimed to his mother and I, even before his treatments were finished, “I am going to be a cancer survivor”. Second, when told of his terminal prognosis, the doctors asked my father if there was anything that they could do for him, my father responded, “I just want to be a survivor like my son”. He still wanted to fight. Though their circumstances did not end as we would typically describe being a survivor, Michael, and Dad, both of you were survivors clearly not only in my eyes, but in others as well.

Then finally, there is the beauty of being a part of the state of Florida’s largest Relay For Life. Over twenty-five years, I have participated in many Relays, as well as spoken at many more. And I must admit, there is both beauty and excitement to be a part of something so special. And over twenty-five years to see how far we have come, and to hear encouraging news of just how close we have come to finding even more cures for cancer, that, is the beauty of cancer survivorship.

I will wrap up with a quote that I use frequently through various support web sites that I am involved with:

“As I drive on the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me. And if for some reason, you are not on that road yet, hurry up and get on that highway. It’s a great ride once you hit the road.”

So Many Will Never Know


There is no rhyme or reason what I choose to write about, or how often.  My intentions when I sit down at my laptop are simple.  Go through the hundred or so emails I get every day, and do some other things around my apartment.  But like an attention span the size of a flea, I get distracted quite easily, and then I click on to “Paul’s Heart” and write.  Well, it happened again.

A link to an article about a famous NY Times journalist, David Carr, broadcasted that Mr. Carr had died from complications of lung cancer.  Okay, nothing really all that unusual as people die from lung cancer all the time.  But as I looked more into the article, because a friend had noticed something unusual about Mr. Carr’s past, I began to wonder.

Between the original article, and others that I read, Mr. Carr, had been diagnosed with pneumonia previously and had died some time after that.  The article also mentioned that cardiac disease had contributed to his death.  And for some reason, the article needed to mention a bout with drugs and rehab.  Again, to the average person, nothing really stands out about Mr. Carr’s death.

But at the end of the article, in a “by the way” mention, Mr. Carr also battled Hodgkin’s Lymphoma.  And to the average journalist, this is no big deal, and may not have been worth the ink and paper it was printed on.

There have been plenty of famous people who have had Hodgkin’s Lymphoma and lived, and died.  But because Hodgkin’s is a rare form of cancer, it rarely gets any attention.  And one of the only things that really gets less attention than that, are the late effects that Hodgkin’s patients develop, who were treated for Lymphoma well over a decade ago.  The sad thing, is most long term survivors have no idea, that many of the ills that they face today, probably have direct ties to the treatments that saved their lives years ago.  And the medical books do not necessarily help our cause either as protocols were never in place years ago to follow up on us to see things as they developed.  After all, statistic really only matter when it goes up to five years.  Studies did not follow any further than that because I guess we were not supposed to live longer and develop severe issues.  You can read up on mine, found under the “pages” section of this blog and compare the only things I had been warned about 26 years ago, risk of a secondary cancer and pericarditis.  In my case, not even close.

But back to Mr. Carr.  I am going to just throw this out and see if it grows wing.  David Carr was a Hodgkin’s Lymphoma survivor.  And I believe that there is a likelihood that his death may have been related not just to the lung cancer, cardiac disease, and the pneumonia, but also from late effects from his treatments.  And I know many people, okay, mainly long term survivors like me, who would feel the same way.

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Now before everyone goes into a tailspin, treatments today are much more safer and pinpoint more accurately than when I was treated, and perhaps when Mr. Carr was treated (I have pinpointed his treatments somewhere before the turn of the century).

First, as many long term Hodgkin’s survivors will point out, just from the physical appearance, is a term we refer to as “Hodgkin’s neck”.  This comes from muscle loss as a result of the extreme radiation exposure during treatments which I am guessing he was treated with.  The article does not mention radiation or chemo treatments, but this is fairly obvious.  I would also probably guess, given that amount of loss he probably also had thyroid issues, common among Hodgkin’s survivors.  There is pain and control issues that come with this physical deterioration over time.  For many, the head begins to fall forward, again something we commoners refer to as “drooping head syndrome”.  I talked about this in an earlier post last year.

I have similar muscular loss, which I have written about, though not nearly as severe as Mr. Carr’s condition.  I also have a major amount of muscle loss in my upper torso.

But I think Mr. Carr’s long term issues went much further than that.  And even if it were assumed that he only underwent radiation treatments, which I would guess he may have gone through chemo,  the scope of damage from late effects can also contribute to pulmonary issues and cardiac issues, of which I and many others face.  Chemo late effects can also complicate things even more so.

There is a chance that Mr. Carr was never followed up for developing late effects.  Things may have just been chalked up to circumstances.  He did drugs.  He had cardiac disease.  He had pneumonia.  He had lung cancer.  So let me start the argument.

With the exception of drug use, the other three issues can have direct ties to late effects from treatments of Hodgkin’s Disease.  Radiation has a growing and lasting effect and chemo can also impact the cardiac system.  Like so many including myself, that would be a “yes”.  Depending on the diagnostics used on Mr. Carr, if he had his spleen removed, he had an increased susceptibility to illness, and even if he did not have the spleen removed, the cancer of the lymph system has an impact on the immune system.  Again, so many of my fellow survivors have multiple bouts of pneumonia from this situation, several develop pneumonia a few times a year.  I had two bouts in 2012.  And then of course, there is the risk of the secondary cancer.

But was David Carr being followed up post Hodgkin’s?  There is no mention anywhere.  And it is sad, that this is not even mentioned anywhere.  Because if it were not for a few of us “pioneers” and I do not even mean me, but the many before me who were the first to have their side effects tied to treatments, cancer patients today would not be followed up as closely as they are after treatments are done.

I do not mean to disparage David Carr, but for those of us who have had Hodgkin’s Lymphoma back in the 1950’s through the 1990’s, if his death was in any way related to late developing side effects from his treatments, I wish there was some way that this could be known and made public.  There are so many of us survivors out there who are aware of the issue of late developing side effects, and literally millions more who are not.  And when they go to their primary doctor, or even specialist, depending on how recent their education was earned, the tie to their Hodgkin’s past may never be made.

I’m just sayin’.

http://www.nbcnewyork.com/news/local/Times-Columnist-Died-From-Lung-Cancer-Autopsy-291975671.html

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