Paul's Heart

Life As A Dad, And A Survivor

A Survivor – A Living Metaphor


Screenshot_2015-10-18-21-15-27

I think it is safe to say, no one, who has ever had to battle cancer, wants to have their life defined by cancer.  But the reality is, and doctors need to be more up front about this, cancer will always  be a part of our lives when it does happen.  But it is how you live your life in spite of cancer that makes the difference.

Sure, initially I spent my early days of remission worrying daily about the return of my Hodgkin’s Lymphoma.  And as time went by, the worrying faded.  Days became weeks, weeks became months, and then years.  But the fear of recurrence faded as the time went on.  Unfortunately, like many others who are in their decades of survivorship, we have had to face quite a bit more challenges in our survival, due to the late developing side effects from the highly toxic and destructive dosages of radiation and chemotherapies.

And with everything I have had to deal with health wise, I still do not live in the fear of my cancer, or its effects.  Quite the contrary.  I take what I have learned in my survival, and apply those lessons to anything negative or challenging in real life.

The Diagnosis

We are given the bad news, the challenge that we must face.  It is going to be difficult.  Statistics will not likely be on our side.  But from the moment we face the “cancer”, we must do all we can to not let that “cancer” beat us.  And I am not talking in the physical sense of loss, but the spiritual.  We cannot let any “cancer” take away who we really are.

The Prognosis

So, is it going to beat you?  Or are you going to do everything you can to get through it?  You know it will not be easy.  As the saying goes, “quitters never win, and winners never lose.”

The Team

Surround yourself with experts that know how to help you get through the ordeal.  Accept support from those that care.  Ignore those who think only negative or that it cannot be done.

1455434442621

The Treatment Plan

The next days, weeks, months, and in many cases, years may not be easy.  You may have a good day, and the next two or three days may be horrible.  This cycle will go back and forth the entire duration.  But as you get through the bad times, you not only become tougher, but you realize that you actually can endure.  You start to look to the future as a realistic goal.  Survivorship is at hand.

The Fight Concludes

It is done.  You have made it.  It was not easy.  There may have been times that you felt like giving up.  But it was not in you.  The truth is, it never has been in you.  And once you have the taste of what it takes to survive one fight, you know that you have what it takes to survive the next one, and the next one.  And every day, you know that what you are fighting for is worth it.

1459800853696

 

An Unexpected Face Of Sepsis


Patty 1

Many people my age grew up watching a lot of black and white television sitcoms.  And for many puberty stricken boys, some of our first hints at hormonal activity came courtesy of “Patty”, or “Cathy” depending on which twin she was playing on “The Patty Duke Show.”  Of course my preference was the more fun, “Patty.”  Later on in life, she would marry another television icon, “Gomez Addams”, actor John Astin.

Patty 2

Most of today’s youth know Patty’s son, Sean who has had many movie roles, including “Mommy’s Night Out”.

Patty 3

While Patty Duke always remained involved in acting her whole career, and at one point became Screen Actor Guild president, her most important role came as an advocate for mental health.  In 1982 she was diagnosed with being bipolar.  It was ironic because of her role as twins, she played both parts, and quite differently.  In hindsight, people involved with the show were always curious how the two “sisters” seemed to be so different.

Patty Duke passed away this week from a complication of a medical emergency.  The complication is relatively unknown to the majority of the public, yet it is probably more common than even a heart attack.  It was reported that she had died from a ruptured intestine, but it was the fatal condition, called sepsis that took her life.

What is sepsis?  Taken from the website Sepsis.org, “Sepsis is the body’s overwhelming and life-threatening response to infection which can lead to tissue damage, organ failure, and death.”  It is a chemical reaction within the body.  Your body basically poisons itself.  And it is so quick, that without immediate treatment of antibiotics, death can occur within hours of diagnosis.  Sepsis is taken from the Greek word “decay”.  This is no joke.  And unfortunately for so many patients, we are unaware when we develop this condition.  Worse yet, all too often, the condition is not looked for, until the situation is too late.  It is believed that many deaths, while attributed to other causes, may actually have been caused by sepsis.

Once sepsis occurs, the pathogens simply attack the body, the blood, organs until it is too late.

I know that up until the late 1990’s, I had never heard of sepsis until one of my fellow long term cancer survivors had informed me that she had recently had a bout, having gone as far as septic shock.  But even at that point, it was not a regular occurrence for me to hear, until my first case of pneumonia in 2012, a doozy of a case, that left me fighting for my life with sepsis levels indicating I was in danger of losing my life.  Initial blood tests revealed that my lactic acid levels were so high, I was dealing with sepsis as much as 24-48 hours earlier than when my body finally had enough.

Seriously, I had no cold or bronchitis issue.  No allergies or anything pulmonary.  Yet when I went to bed that evening at 11am, I felt completely fine, in spite of sepsis raging inside of my body.  Five hours later, I woke up violently vomiting, my body in extreme pain.  The only thing I remember about that moment, was being wheeled on an ambulance gurney in front of my then 5 and 3 year old daughters.  Still at that point, the paramedics, nor the emergency staff waiting at the ER had any idea what was coming.

I was heading into septic shock.

Of course, clearly I survived.  But this is a fear that I have and live with every day.  I never saw my case coming.  And the fact that my immune system is compromised from being asplenic, and having had my body challenged by chemo and radiation therapies, the odds are solid that I will face it again.

But there was no reason, as is many the case, of someone being treated for one obvious issue, that sepsis could be a contributing factor, and until recently as one of my survivor friends, who is a nurse pointed out, is finally getting the attention of medical personnel when patients come into the ER.

Yes, I had barely heard of sepsis.  And on my Facebook page, when I posted Duke’s death, attributed to sepsis, more than a dozen had related personal life stories affected by sepsis.

Patty Duke was an advocate for those with mental illness such as bi-polar conditions.  In her death, she now can be an advocate, much like Jim Henson of The Muppets fame when he passed away from pneumonia due to immunity issues, in bringing awareness to the frequency and dangers of dealing with sepsis.

As a friend of mine who is a paramedic once told me back in 2012, more people die of sepsis than what is actually realized.  It is up to us to be our own advocate.  Recognize at least these possible symptoms as pictured below, provided by Sepsis.org.

sepsis

Remembering Easters With My Dad


There is one unfortunate thing that I had in common with my father, neither of us enjoyed holidays, any of them.  We both had our reasons, similarly, multiple crisis and tragedies that seem to occur at nearly every holiday.  For me, it went a level higher with the spiritual sense, because following my battle with Hodgkin’s Lymphoma, I looked at the big two holidays, Christmas and Easter, for what they were supposed to mean to me, especially given another shot at life.  But the commercialization of all of the holidays, combined with the unfortunate events, just left me really disliking what they holidays were becoming.

My parents divorced when I was very young.  My mother had custody of my sister and I.  But early on, my dad did share some holiday spirit (gifts and Easter candy), though I honestly cannot remember if it was on the actual holidays.  And as I grew, I definitely remember him not being there at all.

I have discussed the relationship with my father in past posts.  Long story short, in my early 20’s, we made amends sort of, agreeing to move on with our lives, build from there, and whatever happened, happened.

Dad1

In the mid 1990’s, he and I, along with my brother and sisters started a new tradition.  We did not really recognize the holiday itself, but my father decided that on Easter, he wanted everyone to get together at his house.  My stepmother and Dad would prepare the entire meal.  All we had to do was show up.  And we did.  It was one of the few times that all of us were in a house all together like that.  My stepmother had also begun a tradition, going to a local flea market, and purchasing ceramic Easter eggs which she gave to all the females of the family.

But following a horrific car accident, my stepmother being hit by a car, changed what after a few promising years had become.  For obvious reasons, as she struggled to survive for many months, Easter had been put on hold that year.  But the following year, all us children had decided that we would help my father to once again, hold the Easter dinner.  My brother had actually went and bought the ceramic eggs for my stepmother.  And all the children would contribute food in some form.  Inspired by our effort, my Dad stated that he wanted to take care of the Easter ham.

After the meal was done, we would go outside to hold an Easter egg hunt for my dad’s grandchildren.  My brother and I started a new and weird tradition, doing the Easter dishes.  This would go on for a couple of years.  But another loss, the passing of my sister from a battle with ALL (a blood cancer), we struggled to get together, all with the same efforts.  My brother, other sister, and I would also experience our first divorce during these years since the tradition began.  But for my Dad, we kept on doing it, year after year.

But as much as my dislike for the holidays that I had, with the arrival of my daughters, Easter celebration with my Dad took on a whole new meaning.

March 2010 - 22

There is no doubt that my daughters played a pivotal role on me giving the celebration of holidays another chance.  Year after year, my daughters would participate in egg hunts along with all of their cousins.

In February of 2013, my father was diagnosed with lung cancer.  Once again we were faced with another Easter being considered for cancellation.  My Dad was concerned that he would not physically be up for it.  But all of us assured my Dad that we wanted to take full responsibility this year, including the ham to keep going what we had grown.  He reluctantly agreed.

Several months later, his cancer turned more aggressive.  He was declared terminal.  And in 2014, as yet another Easter holiday was approaching, this time my father was in a nursing home, in hospice.  We had arranged for my stepmother to be with him, staying in the same nursing home, as they had never been separated before in over 40 years, and we did not want them separated in what could most likely be his last days.  As Easter of 2014 came up, we all decided that we would do Easter together as we had for so many years.

20140331_201537

Easter would be brought to both my Dad and stepmother, and throughout the day, we would all join them.  All the food would be cooked and brought to the home.  And yes, the ceramic eggs were bought.

My Dad passed away a little over a month later.  Easter just does not seem the same.  It is just Sunday to me today.  I know the religious importance of the day as I was taught.  But for all the celebrations and gatherings, the day remains empty for me.

Post Navigation