Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

My 30th National Cancer Survivors Day


Today marks my 30th celebration of National Cancer Survivors Day.  A cancer survivor is recognized by most agencies, not just someone who has beaten cancer, rather, no matter what stage a person is in, from diagnosis to treatment as well.  From the moment you hear the shocking words, “you have cancer,” you are immediately put into a survivor mode, to take on this horrible beast.

From the moment I was diagnosed, I needed more than just to hear, “we can treat this” or even “we can cure this.”  I wanted proof that I could live the life I was expecting to live before cancer, at that immediate point, I had only been thinking of longevity, not quality.

Almost every cancer patient hears two different statistics.  The first, the percentage of survival rates and succession of remission.  The other, a 5-year milestone that nearly all of us are told, this is when we are considered “in remission,” or many of us might even consider ourselves “cured,” though doctors really do not like to ever use the word “cured.”  And though discrimination is illegal, at one time, just decades ago, that 5-year mark was often used as a factor in approving for employment, insurance, and many other needs and events in life.

But I needed more than just hearing that Hodgkin’s Lymphoma carried one of the better success rates of survival, at that time, thirty years ago, 85%, today, well over 90%.  I wanted to know or meet others who had survived a long time.  An uncle told me of a friend he had that had survived, and was still living more than three decades.  Carl Nelson, a football player for the New York Giants was also a survivor of Hodgkin’s.  But this was not good enough.  I was never going to meet these people.  I needed to see with my own eyes.

Over the years, I would get the opportunity to do that and more.  With the help of the internet, and various support groups, I would eventually meet survivors of all lengths of longevity, FROM ALL OVER THE WORLD!

This snapshot above, was just posted yesterday on my Facebook feed.  One of my fellow survivors just hit his fifty year mark.  As the years have gone by, I have not gotten to see many posts like that.  Most of them are all patients either freshly completing treatment, or within their first or second decade of survivorship.  I was aware of many who had survived longer than me, even one as long as 70 years (his screen name was “stillkickin”).

But my friend who posted this great announcement, has gotten so many replies from others who are well into their 30’s and 40’s as far as survivors, more than I had ever seen before.  So, yes, even someone like me, almost thirty years out, can still be inspired by someone else’s survivorship.  I could only wish that others had the ability to see this amazing post.

But this day is always bittersweet for us, just as our anniversaries.  While I cannot speak for other cancers, for those of us who were treated for Hodgkin’s Lymphoma, especially decades ago, many of deal with late effects caused from the treatments that saved our lives, treatments that had never been studied for long term effects, because we were not expected to live longer than five years according to that marker.

And then of course, there are those, that we said goodbye to, having either passed away directly to their cancer, or the side effects of the treatments.  In my family, I am the only survivor out of six in my family still alive from their cancer.  And I have said goodbye to too many friends, young and old, cancer does not discriminate.

But if there is one thing I do believe, even those that have passed on, would not want us to be sad on this day, a day to celebrate surviving cancer.  And no matter how long from the diagnosis, every day after that, is a day you have survived, and lived your life.

So, let the people in your life that you know have faced cancer, that you are glad to be able to wish them, “Happy National Cancer Survivors Day.”

Health Care From An 8th Grade Perspective


My children growing up, is both a blessing and a curse.  I want to hang on to the innocence that is their youth, totally unaware of the bad things going on in the world today, just eat, play, sleep.  But as they are both teenagers now, my role as a Dad has an increased value.  I am not just fun, but it turns out, I am pretty smart too, at least when it comes to something that will benefit them.

I have always been involved in my daughters education even before their first day in kindergarten.  Today, I am no longer a “teacher” in this position, but an “advisor,” being sought for advice, editing, information, and research.  This definitely comes in to play when it comes to any type of writing assignment.  My daughters know that I write, and when it comes to their “final drafts,” they want as close to perfection as they can get, which is when they come to me.

This particular writing assignment, for history class, was about the Affordable Care Act, the topic my daughter chose.  Though she did not give her reason for choosing the ACA, my daughter unfortunately has witnessed many events that resulted in my hospitalization.  So she is more than aware of the importance of health care in our lives, and in everyone else’s.  In fact, her interest in health care is so involved, that currently, that seems to be the direction she plans to take her future.  To say I am proud of her efforts is an understatement.  And just so the record is straight, I am proud of both of my daughters aspirations.

Her request of me was simple, help organize and edit her work.  She would do all of the research, including documentation of her sources, all while meeting the requirements for structure from the teacher.

I am trying to convince her to let me publish her essay here, not just as a proud father, but because after reading her rough draft, having done her research, and completing my obligation to her effort with editing, she has created a paper that is filled with facts, and more importantly keeps politics out of the charged subject that affects us grown ups on a daily basis.  She is still researching statistics to back up her thesis, so it is not ready to publish.  But when it is done, I challenge anyone to disagree with her compelling arguments.

As I said, she has done all of the research on her own about the ACA.  The only thing I offered her was a glimpse of what health care was like, prior to my adulthood, which honestly I had to research.  As I child, I never paid attention to doctor visits to see how they were dealt with from a cost perspective.  While my daughter may not completely understand all the factors that go into health care costs, she was shocked to hear that my mother actually paid $5 for me to see the doctor.  And if I needed medicine, my doctor kept all medicines in his office, costing only a few dollars.

I will warn you, my daughters both have an abundance of empathy, and so they both believe strongly, if someone needs help, the should get that help.  They believe this, because they believe people are good.  And good people do good things.  And so, right from the gate, my daughter states that affordable and available health care should be a right, not just something that people with money can afford.  Yes, I know, this sounds like a campaign talking point.  But at 14, my daughters is at least 4 years away from paying attention to politics.  Her statement is not a political one, it is what she truly believes a decent human being would want this for others.  I did not even need to whip out the Christian “it’s in the bible that we should take care of one another.”

After her initial statement, she explains why it was so important for the ACA to be signed, listing three reasons, availability, accessibility, and affordability.  And again, at no point, did politics come up.  She has kept her paper completely limited to the “human aspect.”  Her common sense confuses her that the issue of health care, even after decades, has still not been resolved.  She does not understand why many people cannot get the medical help that is needed, just because it is not available.  It makes no sense to her, that people who were sick in their past, would keep them from being taken care of today.  And finally, she is saddened to realize that people can die, because they cannot afford their medicines.

Again, no mention of politics in her writing.  She is currently on working on backing up her statements with research, not talking points.  I mentioned to her how proud I was of her work and research.  And I also told her how spot on she was with what she had stated.  I told her how important it was that she stuck to what she wrote, without injecting one-sided political arguments and flat out misrepresentations, because this is what has stood in the way of achieving affordable, available, and accessible health care.

To prove to her just how right she was, I discussed with her, and showed her other posts and columns that I had written pertaining to my support of universal health care.  I make no bones about it, I believe in universal health care as a right.  And I do believe that if we took the politics out of the discussion, we might just achieve that level of health care.

I then explained to my daughter the many conversations I have with others, and with one simple rule, you allow and respect the other to have their opinion.  With that being in agreement, I really believe that you can have an intelligent debate on just what needs to be done, and can be done.

Prescriptions are just one example of health care out of control, and leading to the worst of circumstances.  I explained to my daughter the concept of rationing medications like insulin, and the consequences that can occur from that action, including death.  Again, common sense, trying to understand why a drug that has remained the same for decades, costs 1200% more than what it did originally.  And even more confusing, why that same drug is way less expensive in other countries.

My daughter understands some people are born sick.  She also knows that some people’s health are affected by unexpected events such as car accidents.  And then there are those, like me, whose health issues were created by health care for other health events.  In 1988, I was treated for Hodgkin’s Lymphoma with radiation and chemotherapies.  My daughter obviously was not around 30 years ago when this happened, but she has been witness to the many issues that I deal with today, cardiac, pulmonary, skeletal, gastrointestinal and more, all caused by late developing side effects from my treatments.  What she cannot understand is, if anyone is in need of health care, it would be me, and others in a similar situation.  How could I be turned away just because I was sick before.?

The truth is, universal health care does work.  And it has worked for decades.  What does not work under universal health care, is profit and greed.  My daughter easily has figured out that we are one of the few countries that profits off of its sick.  The look of disappointment on her face says it all.  I explained to her, that many simply do not want universal health care, for either misinformed, or selfish reasons.

The term universal infers “socialism,” a bad political term going back to the 1950’s and 1960’s under leaders such as Marx.  Socialism is often feared as being one step away from Communism.  And perhaps it could be.  But the truth is, we actually accept “socialism” with some items such as the fire department, police department, paramedics, libraries, and more.  So why then would the most important benefit to our lives, health care, not be accepted?  If you are against socialism, does that mean that you want to turn back the services of the fire department and other emergency services?  Of course not.

What I have found, and again, I insist if you are going to debate health care with me, leave politics out of the discussion, and stick to facts, and we can come up with not only a solution, but the real crux of the problem of universal health care itself, beyond the money-making profit machine of Big Pharm and Insurance.

“I don’t want to pay for someone else’s health care.”  Politics and lobbying aside, this is the main argument against universal health care, not whether it works or not, not whether there are problems or not, but rather an individual position.

Again, at one point, getting medical care was easy and affordable.  But in the 1980’s, entitlement issues in politics caused a fissure in compassion that we used to have for each other as human beings, if you force me to throw out the Christian card, I will.  Rapidly, we began to judge those and their circumstances that caused people and/or their families to be unemployed, for any reason.  In simpler terms, these people are not putting anything into the system that they would benefit from with universal health care, and there are those who do not like that.  Of course then, I would bring up the other socialism programs like emergency services, that a person with no job should have their house burn down if they do not work or some other emergency, and I am looked at as if I said something absurd.  But for some reason, when it comes to health care, there is a line drawn in the sand.  No job, “you do not deserve health care at my expense.”  And even if it would save money for the working contributor, in other words, instead of paying $12,000 per year (or more) to an insurance company, having a tax take out $2000 per year, saving this person $10,000 per year, those who oppose universal health care stand by their principle, willing to pay the higher amount, just so that someone does not get something for “free.”

It took no time for my daughter to soon realize, health care discussions were a lot more complicated than the thesis she had chosen to write about.  But she still stands by what she writes, that health care should be a right.  No one should be turned away.  Everyone should have access to the best care available.  And if you have been previously sick, you need the health care even more.  Not paying attention to the political discourse, she is only aware that the ACA is in jeopardy of being turned back 100%.  And since she has researched what it was like before the ACA, she can only shake her head that we are going back to the beginning of the argument, and people will die while the process starts over, if at all.

When A Picture Is All That Is Left


“I don’t think I have ever seen a customer get so many pictures developed so often.”  The was a comment by a cashier at my local CVS over ten years ago, as she handed me a pack of more than 300 pictures that I had just had developed (printed) from a recent trip or event.  And to be fair to the cashier, this was actually a regular occurrence.

Gone were the days of just using a Kodak instamatic, or a Poloroid, and ending up with either 12 or 24 prints.  Digital cameras allowed us to take many more photos and save them.  And today, you can actually take and store thousands of pictures on your phones.

In recent months, I worked on a personal project for each of my daughters.  There was no particular reason I chose to do this, but being a sentimentalist, to say I enjoyed looking back through thousands of photos, is definitely an understatement.

But it was during my recent post about my father, that I reminded myself again, just as I did more than fifteen years ago, that I renew the conscious effort to make sure there are memories not just for me, but for my daughters as well, of the important people in their lives.

In my personal photo collection, I have less than a dozen photos from my childhood with either of my parents.  In my adult life, I did a little better with pictures with my parents.  My maternal grandmother, someone I consider one of the most influencial  people of my life, the photo that I posted yesterday was the only photo of the two of us together, and I have only one other photo of her, with her sister.  Other family members as well, it is the same, one or two photos, maybe a half dozen at best.  And with many of those relatives having passed away, these photos literally are all that I have left.

One thing that I promised to do better, was to make sure that my daughters had plenty of memories to look at.  And it is not just for their benefit, but mine as well.  I spend a lot of my time, day after day, looking back at all the fun things that we had done throughout their short lives already.

I have done my best to document their earliest days, and much to their chagrin as teenagers, I have not eased up on the amount of photos I take.  I make sure that there are photos with grandparents, cousins, friends, everyone who has been a part of their lives.

And what is just as important to them, us, is that even though there was a time when my body was not in the current health situation that it is in right now, struggling with the late effects from my cancer treatments, my daughters can remember the times that we shared, but as they see current photos, though our activities with each other are within my abilities to function, the smiles are still the same.  We still have tons of fun.  And you can see that.

Ten, twenty years from now, there are no shortage of photos to look back upon.  We have had a great time so far, and there are plenty of days ahead, and a lot more photos to take.  But one thing is clear, of all things that matter to me most, is being a Dad.  Some day they are going to go off to college.  Some day they are going to go off on their own.  And I am going to need these pictures, until I get the chance to take some more.

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