Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

25 Jan 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.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
21 Jan 2019

“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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
11 Jan 2019

Hey, I Was In The Middle Of Something


I have been going through my fifteen year old laptop, trying to extend its life, by getting rid of unnecessary documents and programs, and came across a few new things I plan on writing about over the next few weeks.  But for the purposes of my “schedule” with my 30th Anniversary of Hodgkin’s Lymphoma I need to do this post first.

The housecall.  Something perhaps not even many from my generation ever experienced, try explaining to your children that at one time, doctors would come to your house if you were too sick to go to the doctor.  Even better, preventing your germs from contaminating an entire waiting room.  I have been lucky in my lifetime, because I have had 3 primary care doctors in my entire life.  My first, practiced into his 80’s and until I hit my teenage years.  And yes, Dr. Backenstoe was one of those kinds of doctors.  Upon his retirement, I saw a different doctor for a handful of years, until he brought in a new and young partner into his practice.  She would be come my doctor and remains my doctor to this day.  And while I have never had a “housecall” from her, her skills, her knowledge, and most importantly, her care, are unrivaled as far as I am concerned.

Starting off the new year of 1989 in the hospital, recovering from my first major surgery, I really had no idea how things needed to be done, recovery, most importantly, my future.  At the time, my pain from the incision on my abdomen was finally tolerable, I was finally eating solid foods, and this particular Friday night, I was just watching some late night entertainment.

In particular, professional wrestling.  The WWF (as it was known back then), was venturing into “prime time” and major network coverage, expanding from cable programming.  My interest was legitimate, as there was a connection between myself and the WWF.  The WWF filmed its Saturday morning wrestling programming locally at our fairground agricultural hall.  My high school principal was brothers of the ring announcer for the WWF.  The WWF was getting more popular, and its exposure was making it even more popular.

So, from my hospital bed, I was looking forward to a new WWF program, called “The Main Event”, something that had also been tried on Saturday nights, but on this episode, a Friday night.  As the Royal Rumble was approaching (a WWF pay per view gimmick), I was following the story line between Hulk Hogan and Randy Macho Man Savage.  I was looking forward to tonight.  I was actually feeling kind of comfortable.  I had just eaten my dinner.  I was ready to just settle in for the night.

Then, a knock on my door.  The figure walking into my darkened room, not immediately recognizable, because he was well dressed, in a turtleneck and blazer, as he got nearer, I soon realized it was my oncologist.  Wow.  This was something I was not expecting.  Knowing he was of Jewish faith, and the time of the night when he came in, I assumed he was on his way home from synogogue, and out of the goodness of his heart, was just checking on one of his new patients to see how I was recovering.

I wanted to see my wrestling program, but I was so overwhelmed by the caring gesture of my oncologist.  He sat at the foot of my bed, directly underneath the television, which was turned on, but I had the sound turned down.  Okay, this was going to be difficult to pay attention to him, and the television.  But I was intent on concentrating on both.  After all, I did not want to be rude.

It did not take long to realize this was not just a “how are you feeling?” visit.  He grabbed my chart from the foot of the bed, and started reading it, which gave me time to catch some of the live action on the TV.

Doctor:  So, your report shows that your spleen was fully involved with the Hodgkin’s.  I want to begin chemotherapy as soon as possible once you are strong enough.

I turned the television off and directed my full attention to him immediately.

Me:  But, I thought you said that since I only had the one node involved, that even if the spleen was involved, I would still be a candidate for chemo or radiation.  With my wedding less than five months away, I need to get this dealt with right away, and do not want this dragged out for so many months.  I want the radiation.  Besides, you said I could be treated with that, and there would not be so many side effects  as I would experience with chemo.  I want to look somewhat “normal” for my wedding.

Doctor:  Radiation is a possibility, but I strongly recommend the chemo, perhaps even both.

Me:  My mind is made up doc.  I want to go through the radiation.

Doctor:  We will discuss this further once you are out of the hospital, perhaps see you in about a week.

And out the door he went.  I know the discussion we had before I had the surgery.  I knew what was at stake, and the conditions were perfect for what he told me.   There was nothing more to discuss.  I wanted to begin radiation therapy as soon as I was healed enough, and strong enough.

So much for the nice gesture I thought the doctor was making thinking he just cared about me to stop by the hospital… I got the bill for a “outside visit”, aka “housecall” a couple of weeks later.

I met with my oncologist a week after I got out of the hospital.  And I stood firm on my decision, I wanted to undergo radiation therapy.  He referred me next door to the hospital’s radiation department, where I would have an appointment with a radiation oncologist.  I would see him a couple of days later.  We were back on track with “getting this started quickly”.

I never did see what happened between the Hulkster and the Macho Man that night, or at least I do not remember.  But I remember the decision that I made that night.

Posted in Cancer, Education, Inspired By..., Side Effects, The Heart | Leave a comment

Post Navigation

← Older Entries
Newer Entries →