Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2019”

Save A Life – Share This Post!!!!

These are copies of a laminated card I carry in my wallet, and reflects the warning on my med-alert bracelet.  I am asplenic, in simple words, I have no spleen.  Like many others, and for any reason besides cancer, a person could be left without a spleen.  And if that is the case, that means that you are at an increased risk for infections and illnesses, including developing a fatal condition related to sepsis, which I have dealt with twice.  And were it not for this card, and the quick thinking of my doctors, I may not be here today.

I am a member on many pages related to Hodgkin’s Lymphoma, but as I stated, being asplenic is not just related to cancer.  Trauma such as a car accident, another illness, could result in the loss of your spleen.  And the chances are, that you know at least one person in your life, without a spleen.  And if you do, this information will help to save their life.

I received this information over ten years ago, when I met the doctor who is dealing with all the late side effects from my cancer treatments.  This information is given out by the survivorship clinic at Memorial Sloan Kettering Cancer Center, so this is information that is very important, and proven.

Please share this post, encourage the printing of this card, or even typing it yourself, but keep it.  If you end up with a fever over 101 degrees, get to the emergency room.  They need to check your lactic levels which will either confirm or deny sepsis.  With sepsis, it is a matter of hours of saving your life.  The more knowledge and tools you have, the better chance you have.

Over the last decade, I have known too many who have died from sepsis.  Patty Duke, former child TV star, died from sepsis.  The attention to sepsis lasted only days, yet every day, so many patients face sepsis, and unknowingly, pass away with the cause not determined, likely to have been sepsis.

Timing is important.  Share this post.  If you know someone without a spleen, give them this information.  They will be glad you did.

Fatherhood… I’ve Come A Long Way

One thing that I always said over the years, I wanted more for my daughters than I had.  What parent would not strive for that with their children.  It was important to me that my daughters did well in school.  My daughters learned and gave love to their family and to each other.  Each daughter has limitless compassion and empathy for those less fortunate.  And while these are all common values they share today, they are both still their own unique selves.

I was never one to want the girls dressed identical, and had they even been twins, I still might not have wanted that.  But while my daughters love each other as sisters, there is that independence that they want of each other, and rightly so, they should.  After years of having lost the battle of dressing alike, my oldest finely had enough when being asked if her sister was her twin.  My youngest, all too often feels compared to her older sister, and many times, not in a flattering light.  It should not be a really big deal for the sisters to be thought of so closely, but to them, their independence is as important as their unity.

The early life lessons of manners, respect, love are long in the past, the easier part of being a father.  But now that they are older, more important lessons are taking place.  Because now decisions that are being made, are most likely going to have an impact on their futures.  And as a parent, there is not greater pressure.  Everything must be done correctly.  Of all the challenges that I have faced in my life, there is none greater, than preparing my daughters for their future as adults in this world.  Again, with the idea, better prepared than I was to do so.

But there is a balance that must be maintained.  Clearly the pressures that they face in school, will be nothing compared to what they face as adults.  They must not forget this simple thought, happiness must be a priority.  My older daughter can be quite philosophical, and this quote from John Lennon was perfect for the conversation that we were having.  And my youngest definitely agrees and wants to make it her life motto.

There is no doubt, then when my daughters have completed their educations, they will both be on better ground than I was for the adult world.  Both will head in separate directions as far as their life’s plans.  To compare them to each other is not only wrong, but is completely unfair.  Yes, they are sisters – as I often pointed out when I was asked, only to be clarified, “no, they really are sisters.”  The gag was, because obviously being adopted, people were curious if they were biologically sisters, which neither they or I think about.  They are sisters, and always have been, always will be.  They will carry my last name as their own, until they marry if they choose to do so.

Make no mistake, my daughters are sisters.  They have things in common with each other, and they have their differences.  There is no comparison between the two.  As their father, I am their protector, their teacher, their role model, their encouragement.  And in the homestretch of their childhood, these responsibilities as their father are even more important than ever.  It is my job to teach them how to correct their mistakes so that things are not made worse.  It is important to learn about options and choices, and consequences or rewards from those decisions.  I want them to learn the “adult” way to deal with conflict when it arises.

At the end of each day, the flame from my torch of responsibility grows a little more dim, only because the flame is growing on each of their torches.  I could not be more proud of my daughters and all that they have done so far, and now, as I hear who they want to become, I can only say… “wow.”

“Whose Life Is It Anyway?” Loss Of Control

I love the “Pirates Of The Caribbean” series of movies.  And there is not better picture to describe the way your life gets taken from your control, than when the two main ships were battling against each other, and dealing with the vortex.  This is exactly how it felt 30 years ago, staring down the diagnosis of Hodgkin’s Lymphoma, recovering from major surgery to “stage” my cancer, and the road that was going to lead ahead.

Under normal circumstances, we have our own control in the palm of our hands.  Sure, our employers and teachers can take some of that control away from us, because, well, it is an authority thing, and we have to do what they say in order to get paid or to achieve our diploma or degree.  But when we get sick, seriously ill, it is the realization that we lose all control, to our illness if it is serious enough.  Sure, we have a say in how we get treated, but ultimately, it is the doctor calling the shots.  Even the illness and treatments (along with side effects) control how we get through each day, if we have enough stamina to go for a nice afternoon walk, or barely enough to get a drink from the refrigerator.

The “staging laparotomy” for my Hodgkin’s did something to me that nothing had ever been able to make me do before, miss work.  Up until that point, I had never missed one full day of work.  Recovering from this surgery was going to mean I would miss an entire month.

That was not the only loss of control that I had felt.  At home, I was dealing with a new issue, being cared for, and being cared about.  I was not prepared for the “overboard” attention that I was receiving since my diagnosis.  It was overwhelming.  So much so, that instead of returning home from the hospital, I made the decision to “hide” away from everyone, staying at the home of my future in-laws.  I knew there that I would have quiet, able to regain my focus on what was ahead, able to get things back under my control.  Or so I thought.

This is an actual picture of my abdominal scar from the laparotomy.  Looks pretty neat and healed now.  But back in January of 1989, it did not look like this.  You see, one of the procedures during this laparotomy, unknown at the time, would leave me unable to fight infections as my spleen had been removed.  For a person with a normally functioning spleen, though the situation would be possible, it would be less likely, and less dangerous.  Only decades later did medicine realize how important the spleen actually was to the body to fight disease and infections.

In any case, a few days convalescing at my future in-laws, my scar, still fresh, had become infected.  Just when I thought I was getting my life back under control, my body decided otherwise.  But in my need for control, I took myself away from those responsible for my care, more than a half hour away.  The house was empty, as my fiance and her parents were at work.  I clearly could not drive.  I had no choice.  I had to call my aunt.

She was retired and in her early 70’s.  But she was the only one that was going to be able to get me to the doctor’s office, who wanted to see me right away.  I had not choice.  The infection was already bad enough, and could possibly go septic, something that would have the potential to kill me.

Unfortunately, it was not soon I realized, that the infection was not the only danger I was facing.  Now, I want to make perfectly clear, I am not making fun of any elderly drivers or making any commentary on if they should be driving or not.  But I will say without certainty, the infection was not the immediate danger to my health.  Oh, how I wish I could have just driven myself to the doctor’s office.

At some point, most all of us have had an experience driving along side, or in between concrete barriers while highway construction or repairs were being made.  Well, at the time, Rt. 309 was undergoing a major construction project, creating a new interstate.  What it meant was, while the first five mile ride was tolerable, as we approached the construction area, I now was afraid of something worse than cancer, my Aunt’s driving.

As the road shrank from three lanes to one, my Aunt brought her car to a complete stop.  This was to allow ALL other vehicles behind her, to enter the “cattle chute” before she did.  The reason why became obvious as she soon accelerated to 10 miles per hour, the pace she would keep for the remaining 10 miles on the highway, nervous of hitting either side of her car against the concrete barriers.

I eventually did make it to the doctor’s office, without any additional medical needs.  Though clearly I had developed a case of “white knuckles.”  The treatment of my incision did not take long enough to allow my nerves to settle from the journey there, before heading back.  I will spare the gory details of what was done, though even for someone squeamish like me, it was freakishly interesting to watch how he treated the wound.

On the way back to the house, it hit me.  I have no control of my life anymore.  I have a wedding in five months.  Nobody cares except for me and my fiance.  I have bills to be paid.  Nobody cares.  Be here on this day.  You need to do this.  Cancer was now completely controlling my life.  Even as I recovered from this surgery, doing nothing, no work, no driving, nothing, even the infection of my incision controlled me.  The following week I would meet with a radiation oncologist who would discuss with me, the prospects of radiation therapy.  And it would have to begin soon.  I had not control in any of my life anymore.

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