Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “August, 2020”

Chadwick Forever

This past weekend, fans learned the sad news of the passing of an up and coming talent, Chadwick Boseman, best known for his role as the Marvel Super Hero, Black Panther.  He was only 43 years old.  His cause of death has left most who knew of him, with so many questions.  Boseman died from a cancer most often associated with someone older in age, colon cancer.  But as I have said so many times before, cancer does not discriminate by age.

The fact that Boseman hid his fight against cancer, including surgeries and treatments, all while filming, including his role as the Black Panther in his stand alone movie and appearances in the Avengers series, may be shocking to those who have never had cancer, but obviously not to those of us who have experienced cancer.

Hollywood can be especially brutal to actors when they are faced with health crisis, whether they be by their own devices, or in just the misfortunes of ill health.  In any case, though it has not been discussed why Boseman hid the news of his cancer, I am sure that there could be concern of losing value in Hollywood, even with the rise of his fame for portraying such icons as Jackie Robinson, Thurgood Marshall, James Brown, and of course the Black Panther.

No matter how much star power you have, ill health can take away all of your momentum, as if you were not worried about the outcome of your health was not enough.  This is not any different for us common people in the regular world either.  Out of fear of the impact on our employment, we often hide the news, or “put on the brave face” and show up for work, no matter what, and never let on, that we might not be having a good day.

The amazing movies that Boseman put out without letting on that he was facing colon cancer for nearly four years, is nothing compared to his connection to St. Jude’s Children’s Hospital.

Again, without letting anyone be aware of what he was dealing with, Boseman made various appearances at St. Jude’s offering so much joy to the many children there.  During an interview on Sirius Satellite Radio during promotions for Black Panther, Boseman got choked up as he spoke of his experiences of support to the children at St. Jude’s.  Of course, we all have a special place in our hearts for children with cancer, but Boseman had a secret close to home, and I am certain that he felt more than anyone, what these children were going through.

Colon cancer is not necessarily known for being diagnosed in younger people.  The American Cancer Society used to recommend early detection screening once you hit fifty years of age.  Only recently, as statistics show younger people now facing colon cancer, the ACS adjusted their age limit to 45 years of age.  Boseman was diagnosed at 39.

As a long term cancer survivor of Hodgkin’s Lymphoma, one of my potential late side effects from my treatments, is developing a secondary cancer.  Common among us Hodgkoids, is colon cancer.  And so, as part of our follow-up, we actually get screened much younger than the recommended age.  Depending on the results of the colonoscopy, determines any frequency of future scopes.

Late night talk show host Jimmy Kimmel (pictured with Katie Couric whose husband died from colon cancer), made history by having his colonoscopy televised (not in its entirety).  The purpose was to bring awareness.

There are a lot of stigmas to having a colonoscopy, some well-deserved, and some just obscenely false.  The procedure is done with the patient either in twilight, or as in my case, out cold (a complication of my health history makes it necessary for me to be intubated), so by the time it is over, for the most part, you have no idea anything was even done.  You just have to wait for the news.  The most unpleasant part for most of us, is the “prep.”  A patient needs to completely empty out their bowels for the doctor to be able to get where they need to, and with an unobstructed view.  In many cases, multiple laxatives in large quantities (referred to as the prep), leave many with an overly bloated feeling, then only to spend many hours on the toilet.  To be honest, I have never heard anyone say it was “no big deal” doing the prep.  The quantity is what pushes us to our limits.  But other than that, it is a procedure that can save a life.

The one stigma that is unfortunately ignorant and untrue, some will not get a colonoscopy done, because they are afraid they will “wake up gay.”  Yes, some actually think, ignorantly, that because the procedure involves the rectum, the scope will somehow create homosexual tendencies.  I have run into a couple of people like this.  I spent a long time trying to convince my friends this was not the case, and the urgency of getting a colonoscopy.  Eventually, I would convince him, and he did confirm that I was telling him the truth, he would not be “altered” due to the procedure, a procedure that may have saved his life.

Why does a colonoscopy make a difference?  I mentioned earlier, about the frequency of colonoscopies based on results of the scope.  If you have a clean colonoscopy, really no pun intended, you are not likely to be requested to have a follow-up for ten years, possibly more.  But, if during the colonoscopy, the doctor discovers anything, in particular, polyps, these polyps can be removed, and of course tested.  “Polyps aren’t too big of a deal, right?”  Wrong.  Polyps have the potential to advance to cancer, colon cancer.  So yes, having a colonoscopy, discovering and removing any polyps, can help prevent colon cancer, one of the major cancer killers.

I am one of the unfortunately ones.  Not only did I have my first colonoscopy before the age of fifty, I am faced with having them every one to two years.  I develop polyps.  And fortunately, to this day, that is all I have had to deal with.  But my reality is known.  Without this preventative measure, I most likely would not have good chances.

There have been many in my life, who have sometimes criticized me for the awareness I have with my health.  “Just get over it.  Live your life!  You beat cancer!  Enjoy!”  I do not know the circumstances behind Boseman’s diagnosis or battle.  But he was diagnosed four years ago, at an age younger before my first colonoscopy.  If you know who Boseman is, he looked healthy, just as many who do not have the frequent surveillance that I do.  So you tell me who has the better odds… someone not being watched by their doctors because, based on health and age no reason to, or a cancer survivor like me, constantly monitored for what could go wrong next.

Like the actor, I try to go through my life, hiding the many things I face.  I don’t want to be a buzzkill worrying everybody, or incurring pity.  I have a good life, at least I feel it is, and I accept my limits which I rarely let on.  And only if you really pay attention, you can see it.  I get through my life without burdening most, and hopefully making a difference in the many worlds that I advocate for, cancer, adoption, and single parenting issues.

Hollywood lost a great actor who had a brilliant future ahead of him.  And we as fans can only watch the few outstanding films that he made, but will clearly last forever.

I normally save a post like this for Colon Cancer Screening Month, but with the passing of Chadwick Boseman, I felt this was the perfect time to bring awareness.  It can happen to anyone, anytime.

Wakanda forever Black Panther.  RIP Chadwick Boseman.

I Live Smart, Not In Fear – Living In The Shadow Of Covid19

It is a double-edged sword, a Pandora’s box, to be aware of your health, that you face vulnerabilities in life.

As a cancer patient, when we hear the word remission, it is instinctual to expect to move on, return back to our life pre-cancer.  It comes as a shock when years later, some of us discover, that the treatments that were used to save our lives of cancer, only cause other issues, some serious, later in life, a trade-off of one bad thing for another.

When we become aware of these late developing issues, we have two options: ignore them, or face them and manage them.  In either case, we still have our life to lead.  To those around us, from close family, to friends and co-workers, the answer is simple, “just get over it.”  To the patient themselves, not so simple.  When we were diagnosed with our cancer, if we just tried to ignore it, and move on with our lives, we would surely die.  For many of the late side effects some of us develop, it is that same situation.

In my case, my first awareness of my late effect issues was discovered in April of 2008.  A simple phone call to my family physician, in less than a week led to a test unusual for a then-42 year old, but open heart surgery to prevent a fatal heart attack that was imminent.  The surgery was a success, and I would recover.  Again, for those around me, that should have been the end of it, time to move on.

Upon discovering the cause of this cardiac condition, and in the rush to correct it, other things were missed that were discovered with subsequent testing.  In other words, there was no “just getting over it.”  In just the immediate discovery following my bypass surgery, it was discovered that two of my valves have also suffered progressive damage from my cancer treatment as well.  As anyone with valve issues of the heart will tell you, it is not easy to go day to day, waiting for the time to come, to correct those valves.  And in my case, my list of these types of issues goes on.

But has my life stopped?  Absolutely not.  Do I have my limitations?  Sure.  My arms no longer have the mobility or flexibility to throw a softball.  I do not have the endurance to ride a bike.  And due to the fact that I have no spleen, removed during my cancer days, I have to avoid people when they are sick, my immune system being compromised.

Yes, that is John Travolta in one of his earlier movies, “The Boy In The Plastic Bubble.”  It is the story of a young man with a challenged immune system, and the only way that he could “enjoy” life.  It is crudely told, but simpler put, the only way to protect him, especially from others, was to keep him sealed in his own environment, and sacrifice anything and everything.

Asplenics (those without spleens) like me and those who have other immune challenges on average do not face this extreme of a precaution, though we do still rely on others around us to do the right thing.

I recall years ago, challenging my employer when a co-worker came into work with strep throat.  The average person can contract this bacterial infection, may even know that it is contagious.  But unaware of anyone else around them, with a compromised immune system, could spread the illness, perhaps even causing death.  I told my boss I was going home if the contagious person remained.  I had nothing against this co-worker, in fact, he and I were friends.  But I was not going to be put in a position where I could die because of his selfishness.  And surprisingly, my employer did not seem concerned about strep throat being spread amongst the rest of the company, as the employee remained at work.  It was left up to me if I wanted to do without the day’s pay.  And I did just that.

To take care of ourselves daily, to prevent common issues like the cold, the flu, and other such ailments, we are always told to do the most simple of things, cover our mouths and noses if we cough or sneeze, and wash our hands.  These are pretty basic and if taught at an early age, becomes instinctual.  Unfortunately, we can all attest that not everyone appreciates or participates in this courtesy of hygiene.

Every year, we are put on alert about some new outbreak of some sort.  And those of us who care, are considerate, and most importantly, care about hygiene, go the lengths we do to prevent catching anything.  Some even resort to getting vaccines when offered.  But we lived on with our lives.  We had things to do.

But at no time, do I recall ever hearing the war cry like I hear today, “stop living in fear!”

Covid19 and unfortunate connection to politics has changed not only how we protect ourselves, respect others, but if we even believe a virus or illness is serious enough, or even exists.  I know that I have never seen this type of attitude before in my life.

So, we are recommended once again, to do the most basic of things, wash our hands, and cover our mouths.  As the messages get ignored, the advice turns more urgent, recommending additional precautions, such as distancing or not gathering in crowds or wearing a mask, which became even more of a contradiction in messaging because we were not prepared for a shortage of masks, ignoring the fact that our first responders needed the masks so that they could stay safe to save the lives of the sick.  Too many felt masks were not necessary because of that mixed message and then the conspiracy theorists ran with all kinds of stories, burning our country like a California wildfire.  As for the distancing, instead of being about safety, it became an issue of sacrificing our freedom.  Seriously, I am not old enough for the polio outbreak, too young for the flu pandemic of 1917, and all of the other epidemics, but I do know, that I have never seen anyone, or entire populations who felt their need to party and gather outweighed their common sense, and in some cases, political pride.

But if you are like me, even if you have your spleen or no other vulnerability, if you make the choice, to follow advice given to wear a mask or keep distances, there is a compulsion to accuse us of living in fear.  And not only is that wrong, but it is hurtful, emotionally, and as far as mitigating the crisis.

I actually have several reasons for following the recommended precautions, and not just for my health issues.  This was the last photo with my daughters prior to the virus outbreak.  In order to facilitate my next visit with them, I needed to avoid the virus.  And then there is also the thought, I did not want to be someone responsible for spreading the virus myself.  This is can hardly be called “living in fear.”

I must admit, my patience does get tested whenever I hear it.

A couple months into the pandemic, a zoom conference was held (not the one pictured above), involving fellow long term survivors of Hodgkin’s Lymphoma like myself, many with the extra vulnerabilities that I have.  The guest speaker was a doctor who specializes in dealing with these late effects, who coincidentally happened to be the doctor treating me.

The majority of the viewers already previously “knew” of each other, and it would be fair to say, that we all have been living our lives as best we can during this crisis, definitely, not in fear.

One of the questions that did come up, obviously on the minds of many of us, what information might he have pertaining to our vulnerabilities and complications, should we contract Covid19.  We already had heard plenty from “healthy” people or other non-Hodgkin’s related people with recognized vulnerabilities.  We wanted to know the potential impact on us.  The truth is, he did not know, other than the obvious warnings for everyone else.

But the doctor did muse over the concept that he was intrigued by that information, this particular group of patients, long term cancer survivors, and the issues and percentages that would be faced during this crisis.

We still do not know all the facts, percentages, preventions, treatments.  We do know that the death toll in the United States is now over 180,000, victims of all ages, ethnicities, regardless of gender, regardless of health.  The majority of us long-termers know the risks and potential issues if we come down with Covid19, and the likely outcome.

But here is the thing.  And it is nowhere near scientific fact.  Out of the 5.7 million cases in the US, I do know of more than two dozen people who have had Covid19, and at least five people who have died from it or complications.  As I mentioned the doctor wondering about us survivors, I know of several who have faced Covid19.  Some had quite severe cases, and some were mild.  Miraculously, we have not had to mourn anyone.  Again, this is not scientific.  The odds are clearly against us.  With many of us having lung issues, once this gets into our lungs, or we end up on a respirator, the odds are catastrophic of our survival, or at least they should be.

Here is my theory why my fellow survivors, at least the ones that I know, are beating these odds.  Awareness.  Our willingness to advocate for our care.  We know how serious Covid19 is.  And we know the precautions that have to be taken with our bodies with normal circumstances.  But even in those most common situations, if we do not advocate for ourselves, mistakes and carelessness can lead to tragedy.  So we tell our caregivers about our fragility whether we are having heart surgery or a tooth pulled.  And when it comes to Covid19, many of us have to give the news to medical personnel, that some of the options being used, cannot be used on us, because it would cause more harm.

For instance, oxygen is a common treatment during Covid19.  But having had the chemo drug, Bleomycin, I cannot get straight oxygen for the possibility of reactivating a drug, dormant and remaining in my body.  I cannot get Dexamethazone or Hydrocholoquine because of my existing cardiac issues.  And we all know the bad news that comes with being put on a ventilator long term, the likelihood of coming off of it, not good.  Those who do not have these pre-existing issues, or worse, not aware that they have them, clearly do not have this advantage, or opportunity.

So, don’t point your finger at me, at tell me that I am “living in fear.”  I am doing what I have always done.  I adjust to the circumstance, and I prepare for the possible.  My awareness, perhaps like my fellow survivors who have faced Covid19 and beaten it, makes a difference, and if it matters, does not impose on you.  And the best part, it might even benefit you.  But I am not afraid, at all, after everything that I have been through?  Hardly.  I have things that I still want to experience, most importantly, spend more time with my daughters.  I do not want the guilt of someone catching Covid19 from me.  Whether you know me or not, I respect you enough to not expose you to this risk.  Is it that much to ask the same.  That is not “living in fear.”

A Wish That Sticks Like Peanut Butter To The Roof Of Your Mouth

I know, this is probably the oddest title I have ever put on a post.  And I will be able to explain without the need of a flowchart.

I was watching the movie, “The Peanut Butter Falcon” starring Zach Gottsagen, Dakota Johnson, and Shia Labeouf.  It is a story about a young man with Down Syndrome, (Gottsagen an actor living with Down Syndrome) who has one wish, to wrestle professionally.  It is an inspirational movie, but that is not the purpose of this post.

There are other appearances in the movie by famous faces, two of which, are professional wrestlers in real life.  And not just wrestlers, but athletes that I grew up watching.  At this time, clearly these wrestlers are long past their prime in not just the movie, but real life.

And so, off on a search through Amazon and Netflix, I have been scouting as many documentaries as I can, about the many pro wrestlers I grew up watching, to see the many stories of “whatever happened to?”  One documentary led to another.  And then I stumbled across one that was not only my favorite pro wrestler, but would end up providing me with yet another role model of what I want to be remembered for, just like him, a father.

His name was Jim Hellwig.  But to his fans…

we knew him as, The Ultimate Warrior.

“WWE:  Ultimate Warrior – Always Believe” is the cliche documentary, before he became a wrestler, discovering wrestling, becoming his character, and coming around full circle in his career after struggling.

I liked many pro wrestlers, but there was just something about the Warrior, his energy, enthusiasm, and always a positive attitude, rivaling Hulk Hogan at times.

He would come running into the ring, and immediately release a ton of energy going from corner to corner, flexing his muscles, shaking the ring ropes, and just when you thought he should be exhausted, he still had a match to complete.  He was the ultimate good guy.  And then the ultimate and inevitable happened, facing the ultimate good guy had to face the incredible good guy, Hulk Hogan, leaving many torn who they would cheer for.  I liked Hogan at the time, but I definitely cheered the loudest for the Ultimate Warrior.

As time went on, as often happens, the Warrior fell out with the WWF.  In the documentary a lot of that time is covered, but the focus is on the reunion of the Warrior and the WWF, because Hellwig is finally being inducted into the WWF Wrestling Hall Of Fame.

This is the most touching part of the documentary, because it allows us to focus on what would be realized as the most important part of his life, not wrestling and fame, but his wife and his two young daughters.  In fact, instead of having female models escort him out when announced during the ceremony like the other wrestlers, he was escorted out by his two daughters.

This is where the “peanut butter” gets stuck.  You hear Hellwig proclaim how important his daughters are to him.  And you also hear from the daughters, everything their father means to them.

Tragically, or as fate would have it,  Hellwig passed away from a cardiac episode, the day after being inducted into the WWF Wrestling Hall Of Fame.  As someone who faced his own imminent cardiac event, no one is aware of how quickly something can be taken away from you, and that you have no control when it happens, than me.

The ultimate father left behind two young daughters.

During this documentary, I found myself reflecting on my health and my relationships with my daughters.  Out of the six health incidents I have had, my daughters have personally witnessed three of them.  And as I struggle with the uncertainties from my cancer treatments over thirty years ago, this suddenness weighs heavily on my mind.  And then, there is a divorce that has left us living a huge distance apart.

As I heard Hellwig’s daughters talk about all of the things that they will always remember about their father, and not just the wrestling, I wondered, have I left as important an impression on both of my daughters, that they would remember me positively.

My daughters know me for being a “voice” for those who do not have one, whether it is health related, bullying, or any other advocacy need.  They know me for being a loyal friend.  There is no doubt that they know I am willing to fight for anything, especially my health.  I believe I have set enough of a moral example for them, of how they should want to be treated and respected, and likewise returned.  My daughters will have lots of fun memories, and I know will be able to proclaim their father was a great cook.  They will be proud of the things that I have written, and will always remember how my voice sounded in song.

But the most important thing I want my daughters to be able to say, reflects on my childhood, and that is, my daughters will always be able to say, regardless of the distance between us, I never gave up on them.  I did everything I could to see them and talk to them.  I stayed involved in their lives, including their education.  I cannot say that about the relationship between my late father and I.  And the same situation applies for many other parents, fathers and mothers, who have made the decision to walk away for whatever reason.  But my daughters will never know that feeling.  I am always a part of their lives.

I will be there when they graduate High School, and likely some form of continuing education.  Should they get married, I will be the one walking them down the aisle.  I look forward to holding my own grandchildren some day.

Yes, I grew up in a “broken” home, divorced parents.  I had no role model for a father figure, other than the parents of some of my closest friends.  But every now and then, I witness something that lets me know, that I must be doing something right, because I can recognize it.

And that is what this documentary did for me, help me to see, that I have been, and am doing things right, as best as I can.  Most importantly, living and doing as if there might not be a tomorrow.

Whether as the Ultimate Warrior character or as Jim Hellwig the father, he was known for some of his most wise thoughts.

“You must show no mercy…nor have any belief whatsoever in how others judge you…for your greatness will silence them all.”

“The most awesome thing I will ever do, is be your father.”

Like I said, the character of the Ultimate Warrior was my favorite, but he was such an inspiration and example of what a father should be, and how one should be remembered.  I want my daughters to be able to reflect on me similarly, but without the face paint and bulging muscles.

Finally, though not having to do with the Ultimate Warrior, but as I was going through these wrestling documentaries, it was during “The Resurrection of Jake The Snake”, another wrestler, and played a wrestling role in the “Peanut Butter Falcon,” that former wrestler Diamond Dallas Page, who played a pivotal return in Jake “the Snake” Robert’s recovery efforts, DDP spoke profoundly the following quotes that I want to share, and well, this post was perfect to include them on:

“The power you give yourself, by believing in you.”  And, “never underestimate the power you give someone by believing in them.”

See Mom?  Pro Wrestling ain’t all bad.  Sometimes some good comes out of it.

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