Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2018”

A “Heartbreak” That Could Have Been Prevented… Again


If I told you that I had a lot in common with Tom Petty, would you believe me?  Okay, besides the obvious that he was one of the best rock ‘n’ rollers in music history.  Actually, I have a lot in common with many other musicians as well… Prince… Michael Jackson… Glenn Frey…

Petty, Prince, and Jackson all died as a result of medicinal use of drugs, in the cases of Petty and Prince, opioids.  Frey, complications of missed diagnosis because of a complicated health history.  The big difference between myself and these late talented musicians (besides the money), I am still alive.

We feel empowered when a celebrity has to deal with something we, as commoners have to face.  When something is of a rare instance, we hope that something good can come from the recognition of a celebrity dealing with the same issue, after all, paparazzi and the news, would guarantee the attention we need to get the help we need.

As many of our rock ‘n’ roll idols advance to retirement age, that is difficult enough to deal with.  But for many who reach this age, they have put their bodies through so much rigor over the decades, and for some, time catches up with them.  Some develop cardiac issues.  Some have orthopedic issues.  Years ago, Eddie Van Halen got major attention when he needed to have hip replacement surgery because of how much activity he spent performing.  And while there was always concern about “addiction” from pain killers, a decades-long concern, the actual term opioid, was not really pointed at.

But this is the reality.  Our government has failed to deal with the opioid epidemic.  In fact, our government has actually enabled the problem to continue, and to grow.  Big Pharmacy is also to blame.  Sure we want to feel better.  But there was a time, when we dealt with pain, without the increased risk of death.  And though there are plenty of options as opposed to Big Pharm profits from opioids, lobbyists convince our government to continue to keep this crisis, just that, a crisis.  And while our government and Big Pharm definitely deserve to have the finger pointed at them, there is one more finger to be pointed.  And sadly, it is at the patient.

As I say that, I am that patient that I am about to describe.  I have many health issues, cardiac, pulmonary, skeletal, muscular, renal, endocrine, gastrointestinal, and so on, more than a dozen diagnosis that I am being treated for.  When I met my physician at my long term cancer survivor’s clinic back in 2008, he made this statement to me.  “I cannot reverse the things that are developing with your body from your cancer treatments decades ago.  I cannot stop them either.  But what I can do, is help you to slow them down.”  By “slowing down,” he meant medication, physical therapy, and common sense.  For me, as Meatloaf sings, “two out three ain’t bad.”  To treat my physiological issues, I needed medicines.  To treat the pain that increased year after year,  I needed medications.  But the most difficult thing to treat me for, was common sense.

I had a wife, two daughters, and a home to support.  Often times, that meant working 50-60 hour work weeks, then working part time as a disc jockey.  Then there were the years that I campaigned for our local school board also.  Of course, there were duties around the house that needed to be tended to.  And also, taking care of other family members who would fall ill.  All the while, I would never miss a beat.  I took care of everything that I needed to.

But it came at a price.  My stress levels were at an all time high.  Pain from the progression of my skeletal and muscular issues became unbearable.  I developed insomnia due to the pain and the inability to get my brain to turn off at night from all the stress.  My doctors often described me as being too hard on my body.  I often thought it just meant emotionally, because admittedly, I refused to let me give myself any break or credit.  The doctors actually meant physically.

I began prescriptions for my heart and stress.  I was prescribed lower level pain meds, which rapidly progressed to the likes of tramadol, oxycodone, and fentanyl.  But as it was difficult to manage my pain, it was even more difficult to sleep.  Within 2 years, on top of everything else I was taking, I was taking the maximum dose of the strongest form of Ambien.  Those around me would often question how I was even standing, let alone dealing with the fog that was left for my brain to focus through.  But I did it.  And I did it well.

Tom Petty’s widow describes the unimaginable pain that the singer was enduring, just to keep going.  He had a bad hip, but had no time to deal with it.  To take time off would risk momentum and income.  Instead, he just kept piling on meds to deal with tolerance of drugs no longer working, and probably others to treat newer symptoms.  Petty’s situation is no different than my situation, or others that I have witnessed having to deal with.

What many people may not understand about fentanyl, in particular, the medication patch, placement is vital.  Too close to the heart can be fatal.  I found this out by mistake as the directions specifically state, “do not place in the same spot of application each patch.”  But nowhere did it state where not to place the patch.  Only by communicating with another survivor who found out the hard way, I learned not to do it again.

Being declared legally disabled due to all of my issues, and my former employer assisting me in this direction, my employer was no longer able to accommodate my restrictions as required by the American With Disabilities Act (ADA).  In 2012, I was sent to the emergency room 5 times, twice for cardiac related episodes, two for pulmonary issues, and one undetermined.  My body was only getting worse.  And no matter how much medications were being thrown at me, there was no end.  I was no longer able to do both, live the lifestyle I had and have quality of life.

I imagine that is where Tom Petty was in life.  And it has now been confirmed to have cost him his life.  Yes, the opioids were the main factor.  But it was also his desire to do what he did best, make rock ‘n’ roll.  I imagine that is also what Prince and Michael Jackson went through.  And now, reports are coming out, just how badly doctors dropped the ball concerning former Eagle Glenn Frey that eventually led to his passing.  Again, those of us with these unusual diagnosis to deal with, understand that all too well.

Please do not let Tom Petty be just another casualty of the opioid epidemic.  The loss is heartbreaking enough.

What I Want My Legacy To Be


A friend of mine, actually two of them stated recently, “though my life has not turned out the way that I thought, I would not change what I have now.”  Truer words have never been spoken.  A cancer diagnosis in my early 20’s completely derailed the direction that I thought I had planned out ahead of me.  But looking where I am now, I find myself having returned back to the simplicity of my future plans, again, keeping in mind what is important to me, not expected of by others.  Materialistic goals once again of no importance, rather, what friends and family will remember me for.

This was an example taught to me by the countless stories I had heard about my grandfather who had passed away before I got to know him, as well as the influence on my life by my grandmother.  My grandfather was a small-town philanthropic.  My grandmother was all about “do for others before yourself.”  My grandfather was also the inspiration for my enjoyment of music, but that is another post.  I remember how proud I was, to hear the elders of my small town, refer to me as “Claude’s grandson,” followed by conversations about the many good things he had done in our town.

On the front page of “Paul’s Heart” is a countdown clock which is currently set for the 30th anniversary of the day that I completed treatment for Hodgkin’s Lymphoma.  It is a personal decision that someone sets the mark where their life is at the half way mark, but for me, I have lived more than half of my life with cancer, and its late effects from treatments.  I am also past the half-way point of the century mark.  And while I really have not given it a lot of thought, because of all the health issues that I have, and how close on multiple occasions my story could have come to an end, I know that I have a lot more fight in me.  I want to live.  And there are two factors that drive me.

My daughters mean the world to me.  And very much like my friends’ quote at the beginning of this post, while they were babies when their lives directions had changed, there have been changes since also for them to deal with.  But the one constant that I have made sure of, my daughters know how much I love them, and how I will do everything I possibly can for them within my ability.  For them, they know it is not the materialistic things that matter, but time, and words that matter.  Every day, I tell them that I love them.  I help them with their schooling which has always been important to me.  And more importantly, I guide them as they head toward their future.  No matter their choices, they know they will not be judged negatively by me, only supported and encouraged.  Both of my daughters have a determination that is unrivaled.  And as they go through life, I will be with them every step of the way.  Graduations.  Walking them down the aisle should they choose to get married.  And also, I have hopes of one day, being a grandfather myself.  But it has been my daughters that have gotten me through the most challenging and life-threatening times of my life.  They are what drive me.  And as they have told me, I am “very tough for everything I have gone through.”  I am “a fighter.”  Their words, not mine.

After my daughters, I want to be remembered for my support for cancer patients and survivors.  It will never be on the major scale of an American Cancer Society, but rather one person at a time, and it has always been, as many as I can reach.

Before my treatments were even completed, almost 28 years ago now, I had completed training to become a counselor for cancer patients.  It was a unique program called “Cansurmount”, peer based counseling.  Counselors would be matched up with other cancer patients who were dealing with similar cancers.  As I soon found out, the rarity of Hodgkin’s Lymphoma, and shortage of counselors, I would be counseling patients with other cancers as well.  I would visit patients in their homes and many times in treatment centers, or even the hospitals.  One thing was obvious, every patient was encouraged to have a cancer survivor standing in front of them to prove to them, that they could do it.  As someone who battled cancer with no examples of survivorship, I can tell you, this was a big deal.

In the mid 1990’s, the internet gave me another way to reach out to other Hodgkin’s patients.  List serves (email support groups) had been created to connect many who were in search of answers, and inspirations.  And for the first year or two, my concentration remained directed towards cancer patients.  I was able to provide encouragement to many others in ways I never dreamed possible.

Then, one of my fellow survivors on a particular list serve, recognizing my longer tenure of survivorship, had encouraged me to participate in a newer group, specifically created for long term survivors of Hodgkin’s and other cancers.  It was not long that I was involved, that I actually felt out of place.  These lists did not seem at all about living life without cancer after treatment.  The people in these groups were dealing with serious issues, of which I had none at the time that I was aware of.  I tried to hang on as long as I could.  Emotionally, the toll was huge, and honestly, scared the shit out of me.

Through these groups however, I started to learn of other survivors who had lived just as long, or longer, post-Hodgkin’s.  Finally, I was seeing the inspiration I needed to realize that I could live past the magic 5-year mark that cancer patients always hope to reach.  But seeing them through a computer screen was not enough.  I decided I wanted to actually meet them, face to face, just as I visited cancer patients.  I could not possibly visit all of the new friends that I had “met.”  So I decided to invite them all to my home.  Approximately 20 of them came, from all over the country, and the world (visitors from England and South Africa).  It was set up as a “conference” for the weekend, which included fellowship, and education as I had invited some professional speakers from the medical profession to talk about the advances of cancer treatments and learning to live life.  It was so successful, and the feelings were mutual among those that attended, and expressed by those not in attendance, another gathering needed to be held again.

This time, the event was held out in California, and we had doubled the amount of people that had come to my home.  For me, I continued to meet so many other survivors of Hodgkin’s Lymphoma and I know that I could not have been alone in how I felt.  We were not alone.  By this time, I had met over 50 other survivors of Hodgkin’s Lymphoma.  And the importance had sunk in on just how important it was to meet other patients and survivors.  Next thing you knew, others would try to set up these types of gatherings, at the least, even if only a few at a time.

In 2008, my health took a dramatic turn.  Up until that time, I was just counting the days that I survived Hodgkin’s Lymphoma.  I had not been followed up in years once I hit my five-year mark.  I will hit my 10 year anniversary in April of major heart surgery to correct damage caused over time, from the treatments that saved my life.   I had heard of these issues online, but not from the survivors I had already known.

While my interests in helping cancer patients remained strong, I now realized that I had to concentrate on survivorship issues as well.  As I would find out, very little was known about our issues, because that magic 5-year mark?  There was little if anything known about survivors passed that point.  We were not supposed to live long enough to develop the side effects that so many, and now myself, were dealing with.

Like the cancer patients I met and was counseling, it became important to meet other survivors who were dealing with these severe health issues as well.  Most doctors did not know anything about us, how to diagnose us, how to treat us.  It was up to each of us to spread the word amongst ourselves.  All of a sudden, as patients, we had knowledge to take with us to our doctor appointments with our mysterious ailments.  If we were lucky, as I was, we dealt with an open minded doctor who listened to us, and felt there was something to be taken serious.  For too many others, they faced cynical attitudes of denial, sent home, with feelings of hopelessness.

In the years since, I have literally met hundreds of other survivors.  Though in recent years, my ability to travel has been limited, until this time, I travelled all over the country meeting others.  And no matter where I went, it was announced to internet support groups that I was going to be in the area, and “how about anyone like to get together while I am there?”  New York.  Seattle.  Texas.  California.  Pennsylvania.  Florida.  Anywhere, USA.

Cathy.  Danny.  Donna.  Tammy.  Lynn.  Davina.  Karen.  Lisa.  Jennifer.  Tobi.  Stephanie.  Betty Ann.  Peter.  Kristi.  Michael.  Leslie.  Angela.  The list goes on.  I have met hundreds of other survivors, and have conversations online with hundreds more over various web sites.  It was inevitable that another world would be crossed, as a couple of my fellow survivors have also adopted children, from China, just as I did.  It would be nice to meet them all.  I will not say it is impossible because if I believed that way in life, I would not even be writing this post.

 

Sadly, I have lost so many fellow survivors as well.   2017 was a very painful year for friends and fellow survivors that passed away.   This has been the hardest part of my survival, as it causes a flare-up of my Survivor’s Guilt.  It is a concept that only those who deal with this guilt, can understand.  Yes, I know, I should be grateful for my survivorship, yada yada yada.  But that does not help me deal with the “why them, not me?”  Some received more harsh treatments than me, many received way less.  I have attended the funerals of so many out of respect for my friends and their family, but also so that I would never forget what they meant to me.  It provided closure.  Again, I have attended funerals all over the country until recent years, because it was what I needed to do.

Newer patients are followed much more closely because of long term survivors like myself and the others that I mentioned previously.  Today, survivorship clinics are popping up everywhere in the United States, and the world.  And I honestly believe this could not have happened were it not for us survivors having reached out to others, to offer hope and direction, where to get answers.  We are a special group of people who put their political and religious differences aside, who are there for each other, day after day, with encouragement, support, and acceptance.  And we are all still trying to make arrangements with each other when we visit somewhere.  It is good not to feel alone.  It feels great to be understood.

This is what I want my daughters to know about me.  I may not be an inventor or cure a disease.  But I did what I could to help others deal with a most difficult time in their lives.  I wanted to make a difference.

How Far South Do I Need To Go?


The east coast just got hit with a major storm, on top of dealing with already severe cold temperatures.  I reside in south Florida, and this was our actual reading at 7am yesterday, and again, this morning.

There are plenty of jokes about Floridians and Californians when we are forced to deal with the cold.  And believe me, I get the jokes.  I used to make them.  But having lived in Florida for a few years now, I now understand just how rough the cooler temperatures are on warmer climates (we are nowhere near dealing with subzero wind chills like up north).  My body has been acclimated to gradual dropping temperatures, but only to a certain degree.

My issue is more than just keeping warm though.

Yep.  Not normal Floridian attire.  But for me, it is necessary.

I have pulmonary issues related to treatments that I received for Hodgkin’s Lymphoma nearly three decades ago.  The progressive damage includes radiation fibrosis as well as restrictive lung disease (I only have 75% use of my lungs).  Extreme weather conditions have a drastic impact on my lungs so for me, it is about prevention first, treatment if necessary.  But here is the catch.  There is no treatment.

As you can see, I am wearing a neck scarf, typically I used to wear when I used to ski.  I will actually wear this once the temperature drops into the lower 50’s.  But I can wear it in the 60’s if wind is a factor.  Here is the issue.  The colder air, or forced air, in my lungs creates a situation very similar to asthma.  The only difference is that an inhaler does not provide any relief.  And if I do nothing to reverse what is happening, my lungs actually feel as if they are rocks, making it more difficult to breath.  And if I do nothing to reverse what is happening, the situation gets made worse as I usually head towards a full blown panic attack.  And it only gets worse from there.

It took a while to figure this issues out.  And only after being seen at a survivorship clinic at Memorial Sloan Kettering Cancer Center did I learn what I was dealing with.

More than 20 years ago, I met another fellow Hodgkin’s survivor.  She was treated approximately the same time period, and similar modes of treatment.  She had these lungs issues.  I recalled how hard she struggled with her lungs, and often how painful it was.  Often relief was slow and heartbreaking.

Between my friend and my medical team at MSKCC, I learned that I had a similar condition.  And since treatment did not provide any kind of relief, the issue became more about prevention.

Before I retired several years ago because of my health, I was constantly seen dressed like the picture above by my co-workers once the temperatures got cooler.  My peers often made fun of me, because just a few years earlier, I was known to actually wear shorts through the month of January.  And now, if the temperature got into the 50 degree range, I wore a ski mask.

Well, here is what I have to do, if I do not wear the mask.  If my lungs are restricting due to the temperatures, I need to get indoors as soon as possible, to a climate controlled environment before I develop the panic attack that is sure to come.  Then, I just sit down, and wait.  I try to focus on my breathing, waiting for my lungs to warm up, trying to expand my rib cage.  This process can take anywhere between a half an hour to 45 minutes depending on how bad the situation got.

This was not a situation my employer was happy with, having to wait for me to begin my work day.

So, the ski mask actually reduces dramatically, the amount of cold air being breathed into my lungs, and reduces any wind forcing the air into my lungs.

This issue also is affected by heat and humidity, but right now, I would just be happy to have our temps back up in the 60’s or 70’s.

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