Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

03 Mar 2017

A 27 Year Fight


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Today marks the 27th anniversary that I heard the words, “you are in remission.  Go enjoy your life.”  Some cancer survivors recognize their anniversary date as the day they were diagnosed at which point, would put me then at nearly 30 years since I was diagnosed with Hodgkin’s Lymphoma.

I have made this bitter-sweet announcement every year.  I do not celebrate this day.  It is not a day I wish to celebrate, because there are so many that I personally know, or have known, who have never even gotten to hear the word “remission” or continue to struggle.

I continue to struggle with Survivor’s Guilt as I have right from the beginning… why am I still here, and other’s not?  Hodgkin’s has a survival rate of over 90%, which in spite of being a rare cancer, is still a very good cure rate.  And thanks to survivors like me, with similar longevity of survival or even greater, yes, there are many who have survived Hodgkin’s longer than me, patients today are treated with a much finer tuned treatment, with similar success rates.  But for those same survivors with the same longevity as me, we have been left with so many late developing side effects from the treatments that saved our lives, and medicine was not prepared for our health issues.  Imagine being exposed to four times the lifetime maximum exposure of ionized radiation, chemicals that destroy the heart, chemicals that are actually used to poison in warfare.  That is what I and so many others have been exposed to (or more).  For many of us, these late effects have been worse than the cancer.

Yes, like I said, I do not celebrate this day, I continue to fight for this day.  In 2008, I suffered the first of three near fatal episodes caused by the late effects from treatments (heart, pulmonary, sepsis).  From day 1, I have had to fight for my rights as a patient.  Every day, I fight against discrimination for reasons such as employment, insurance, or just someone who feels that I get favorable treatment just because I had cancer.  There have always been emotional issues to deal with, as clearly, my life that I had planned as an adult would never be the same.  I am the only survivor of six in my family to be living after cancer.  Cancer has taken three grandparents, my sister, and nearly three years ago, my father.  I have said “goodbye” to so many, of all ages, either from the disease itself, or complications of the late effects from the treatments.    Last year was one of the worst in terms of fellow survivors that passed away.  I am so fucking tired of dealing with cancer.

But what is it that was the deciding factor that I would beat a disease that as a child, all I had ever known about, was everybody died who got cancer?  Ok, clearly, there is no end to how far I will go to fight for my survival.  I may lose battles, but I will never give up fighting.  Those who truly know me, know this fact about me.  My daughters were not around when I fought my battle, but they have witnessed what the late effects have done to me.  And they know how much they mean to me.

So what else could have contributed to my longevity?  Luck?  I am sure a part of that played some sort of role.  But I am driven today by my children.  I am hopeful that someday they will learn that cancer can be prevented.  They have personally witnessed my support of other cancer patients and survivors and know what it means to even just be an ear for someone to talk to.  My primary care doctor has learned about long term cancer survival from me, as well as the specialists responsible for my care.  In fact, one doctor has made it his mission, to make sure I get called “grandpa” some day.  I am not rushing that day either.

I have support from people near and far, old friends and new friends, fellow survivors, and many, just good-hearted empathetic people.  I have met hundreds of other survivors in person, and have befriended thousands more on-line that I may never even physically meet.  And my closest friends, do a great job, of making sure that I take care of myself.  The fact is, there are probably many reasons why I am still here.

And for that reason, I am going to continue to fight everyone and everything.  I am going to fight for patients’s rights.  I am going to fight to educate medicine to learn there is a whole society of people who have survived a horrible disease, and has left them battling side effects that for many, just do not make any sense.  I am going to continue to fight discrimination in all its forms.  I am going to continue to fight for not only affordable health care, but the care necessary for survival.  I am going to continue to fight our government to make sure that myself, and others are not only not forgotten, but that we get the care we need and not dismissed because, well… our “bodies have been through too much so we’re not going to go to any extra lengths to treat” me.  I did not ask for these late effects, or the negative ways that I have been treated because of them.  And I will fight against anyone who says it is not fair to them that my burden of health should be placed on society.

You can see on my counter, I am approaching another huge milestone in just a few years.  Clearly I am counting on a lot more fight left in me.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
04 Feb 2017
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World Cancer Day 2017


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I am certain that I am not the only one who has dealt with cancer.  I know that I am not the only one who has lost a family member or friend to this awful disease.  I am not the only one who has survived cancer just to suffer with late effects from the treatments that put me into remission decades ago.

Cancer has taken so many from my family, both of my grandmothers, my grandfather, my father, and my sister.

Cancer has taken so many of my friends.  Michael.  Dolly.  Davina.  And so many more.

There are many who get to live on with their lives following their treatments, waiting to hear the words, “You are in remission.”  I know too many who deal with late side effects that were unknown could develop when we were treated, several of those side effects life threatening.  And I know too many that have passed away from complications of those side effects.

On this day, I remember each and every one of you.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
02 Feb 2017

A Smile Has Left…


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It seem like that last year and half, the world of music has just been devastated by losses of talent, influence, and just great music.  Again, music has lost another great musician, John Wetton, most notably of the 80’s super group, Asia.  He was just 67 years old, but had battled several serious issues late in his life from alcohol abuse, cardiac disease, and ultimately, it would be cancer that would take his life.

I can relate to Wetton on many things.  I was a huge fan of Asia, one of a handful of bands that I possess every recording, and not just their “hits” years of the early 1980’s.  And when it came to vocals, I honestly believe my voice is quite similar, if not identical to Wetton’s.  I had enough practice singing his lyrics in the indoor arena known as my car.  Although I was one of millions who thought Asia was going to be around forever, not many were like me, that there was a lot of inspiration and experience that made up this group.  Members of the band came from other great groups such as Emerson, Lake, and Palmer, Uriah Heep, King Crimson, Yes, and the Buggles (“Video Killed The Radio Star”).  I actually got to hear Wetton sing Downes’ “Video Killed the Radio Star” during Asia’s original lineup reunion.  I went from growing up thinking there were just two types of music, pop and country to learning that with FM radio, there were actually different forms of rock, including this type of progressive rock of Asia.

Over the last year, I have been saddened by all the passings of such great musicians like Glen Frey of the Eagles, David Bowie, Prince, George Michael and so on.

But it is not just because of the music of Asia, now being silenced (although surviving band member and co-founder Geoff Downes has stated Asia will go on), but other connections to Wetton that I have.

Though details are not discussed, Wetton had heart surgery.  I know that very well myself, that surviving a diagnosis of heart disease, can result in a re-birth if you will, of life.  And it seemed lyrically, on many of Wetton’s many band projects, not just Asia, but collaboration Icon partner Geoff Downes, and Wetton’s own solo work, religion seemed to find its way into many of the songs.

But it was colon cancer, that turned out to be too much for Wetton.  He had been battling it for a couple of years, after discovering a 1 kilogram tumor.  A quote in an interview following his diagnosis was advice from Wetton, for everyone to get checked.  It is a known fact, that your chances of surviving colon cancer, is to get it taken care of sooner than later.  And often times, pre-cancerous polyps are discovered during colonoscopies and removed, before they get the chance to turn into cancer.  And that should be a good thing.

So, why do not more people get colonoscopies done?  As a long term cancer survivor myself of nearly 28 years, I have to get colonoscopies every 2-3 years, while those without pre-existing conditions often only need to get them done once every 10 years once they hit 50 years of age.  Again, if polyps are found, they get removed before they turn into cancer.  And if they are cancerous, the cancer is treated sooner, than after severe symptoms reveal themselves (such as 1 kilo tumor).

There are a couple reasons I know of why some refuse to get colonoscopies.  One makes absolutely no sense, and is generally only considered by men.  The other, is generally agreed upon by both genders.

It is hard to believe that men often avoid colonoscopies, because they are afraid of “being turned gay.”  Because of how the procedure is performed, there are absolutely some men, who are afraid that they will develop homosexual tendencies.  Nothing could be further from the truth.  And I know from talking to some who expressed this irrational fear, expressed an embarrassment for feeling this way, following their colonoscopy.

For the rest, many complain about prepping for the colonoscopy, because of the amount of fluid that must be consumed to help “clean out” the body.  Feelings of bloating and nausea can be overwhelming.  And once you have gone through one, of course you know what to expect in upcoming colonoscopies, seemingly enough of a deterrent to not go through another colonoscopy.

But the fact is, colonoscopies save lives.  And though it did not make national headlines, the late John Wetton of Asia, made it clear, the importance of getting screened.

Because of my love for music, I do have a tendency to take the deaths of musician a bit more hard especially compared to other celebrities or athletes.  But because of a connection I felt to Wetton, musically, cardiac, and cancer, his death is hitting me a bit harder.

Posted in Cancer, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment

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