Paul's Heart

Life As A Dad, And A Survivor

Hodgkin’s Disease – How I Got Through My Treatments


My world instant ground to a standstill when I found out that I had cancer.  On one hand, the natural reaction was to wonder if I would find success in treatments, or if I would be like so many before and succumb.  It seemed to take forever just to get all the diagnostic stuff completed.  Yet treatments needed to begin soon for me to have the best chance of survival.  It just took so long to get started.

Radiation seemed like the easiest choice because it would only go six weeks, a total of 30 treatments lasting about a minute each.  I looked at it as having been through x-rays, this would not have been much worse.  Fatigue was the biggest issue for me and totally underestimated.  All of a sudden I was going to bed at 7:00 in the evening.

The decision of which treatment to pursue was mine.  The oncologist had recommended chemo followed by radiation.  But I was too obsessess with what I believed that chemo would be too tough for me to handle, physically and emtionally.  Any knowledge I had of chemo came courtesy of the media, and of course, no movie or television show ever showed chemotherapy being a cakewalk.

Unfortunately, my oncologist was right with his call.  I was wrong with mine.

I came back from my honeymoon at the end of May, completed a CT scan, and new disease had been discovered.  There was no option at this point.  I was going to go through chemotherapy.  I had never met anyone who had gone through it.  I had a list of side effects to expect, nausea and hairloss, the typical issues.  But now I had to prepare originally for six cycles.  Cycles in my case meant months.  I would get half of my chemo cocktail in one appointment, get the other half the following week, and be given two weeks to recover.  But after those six cycles were complete, my oncologist felt the need to do either an extra two cycles of chemo, or additional radiation.  I had it in my mind that with my body and mind already involved with the chemo, and planning to get that far, I would be able to handle an additional two rounds of chemo.

So there it was, emotionally, I had to plan for eight months of chemotherapy.  Eight months is two thirds of the year.  Eight months seemed like an awful long time to look ahead.  It was overwhelming.  I had to find a way to convince myself that an easier approach could be had.  How could I reduce eight months, 240 days down to something that I could feel like was not forever?

Here was my formula for getting through chemo:  eight months of chemo, which would equal sixteen injections, of which only half of those injections would make me vomit, which the nausea would only last maybe a couple of hours after each injection = sixteen hours of nausea.  I have spent plenty of days with the flu and other virus when the nausea has lasted longer than that.  I could get though this.

The first thing that I had to do, just like in sports, take one day at a time, just like one game at a time.  It would do no good to look ahead when I had not finished the prior treatment.  So when I got through the first injection, the one that would cause nausea, I knew I could get through the second injection the following week.  Of course, after I completed the second week, I had completed one cycle.  I was able to get through one, I would be able to get through the next cycle (the second cycle).  Once that cycle was done, I was already 1/4 of the way through, and could get through the third cycle because I got through the first two.  Then I reached the half way point, and as tough as it had been, I knew I could get through the rest.  Each month, I treated the same way as the cycle before.

In month eight, my body had a different plan.  I had developed a fever, and my blood counts had dropped.  Chemo would have to be altered or postponed.  The truth is, I had tolerated seven cycles of full dose chemo, I did not want to accept anything less, so I asked the oncologist to delay the treatment by a week to allow my body to get stronger.  He agreed.  This is why you do not mark dates down on the calendar.  It was a huge disappointment not to get finished on the day that I had planned all along from the beginning.

And then it began, the final cycle.  Nothing was going to stop me at this point.  The following week, I came for the final injection.  And that is when I knew I made the right decision in choosing my oncologist.  Brenda, my oncology nurse was removing the catheter for the final time.  “Paul, when you get out of this chair, I want you to picture the biggest marching band you have ever seen in your life.  They are lined up down the hallway playing a victory song just for you.  You did it.  You have beaten cancer.  Now go live your life.”

The Care And Keeping Of You


Prior to Wendy and I becoming parents there was one thing that we had not given thought to as parents, protecting our child from pain.  I am not talking about the “fell off the bike” pain or “the neighborhood kid punched me” pain.  During a visit to the ER, we saw a father carrying his small child past our trauma area.  She was limp, hopefully just very sleepy.  The doctor was making his way from room to room and had left our room to go the next room which is where the little girls was.  I am sure, just as with us, there were a lot of questions to find out what was wrong with the little girl.  And then we heard it, the blood curdling screams.  I looked at Wendy as said, “they must be trying to get blood from her.”  We cringed with every scream and our hearts soon sobbed with her cries.  But at that moment yet, we were still just thinking “that poor little girl.”

Then it hit us.  It REALLY hit us.  The child’s screams and cries suddenly changed from random and numerous, to focused, emphatic, and demanding.  “DAAADDDDDYYY!!  THEY’RE HURTING MEEEE!!!”  Two different feelings were occuring in me at that moment.  First, I know how I would react, Wendy as well, if anyone were to inflict pain on our children.  But the second, she had to have been watching her dad stand there, not doing anything while the tech stabbed her with the syringe.  She all but accused him of letting the tech hurt her.  This was one thing as a parent, neither Wendy or I had given any thought to.

But there are several difficult things that I have anticipated being a father to two girls.  Changing diapers was a piece of cake.  Rocking the girls to sleep?  I miss that horribly.  Boyfriends.  The change.

So I am sitting at the kids’ karate class with other parents and Madison sits down next to me.  She starts scratching her legs like she is some sort of scratch-off lottery ticket.  I asked what was the matter thinking maybe we were using a different detergent, maybe the sweat was getting to her?  She blurts out, “it’s the hair on my legs!  I have hair on my legs!”  I could not reach my ears with my fingers quick enough to plug my ears and do the “la la la la la la la” thing.  I know what I heard.

A parent sitting next to me said, “you know Paul, she is nine.”  And I looked at her ready to give her the Nobel Obvious Award and quickly responded, “yeah? so what does that have to do with anything?”  Denise responded, “girls, anywhere between nine and twelve… you have to prepare her.”  I had no idea what she was tallking about.  I knew growing hair was a sign that she was getting older, but I honestly did not put everything together to realize the bigger picture.

Evidently my confusion was showing.  Denise continued, “The Care And Keeping Of You…”  Taking care of me?  I had no idea what she was talking about.  “It’s a book.  You need to read it with her.”

About a week later I was at the hospital for a couple of my appointments.  In between appointments, I will do one of two things, visit the Barnes & Noble around the corner from the hospital, or grab something to eat.  This day I had a little more time in between appointments so I managed to do both.  Barnes & Noble had the book, it was from The American Girl Doll series.  So I bought that and a couple of other books for both daughters and headed off for lunch. 

I usually eat at the same place every time I am in Manhattan, and I am usually in an out within approximately twenty-five minutes.  But today, the service was a little slow.  As I waited for the waitress, I figured I would take a quick look at the book I needed to read with my daughter.  The first several pages were harmless, talked about changes, emotional, hair growth.  Okay, time was running out, so I skim to a little more than half-way through the book.  Breast development?  Quickly, flip away, backwards!  No, I flip forward a few pages.  Inserting a tampon?!?  With pictures?  What the Hell?!?  I was no longer safe flipping backward as I was too far into the book, and I was more afraid to turn any further ahead.  I could do only one thing, and that was look up and away.  And there she was, the waitress looking down at me with some questionable look of disgust.

I tried to assure her, “it’s not what it looks like.”  What I thought was taking a lot longer for lunch, soon became true fast food.  I put the book back in my backpack, finished up my lunch without looking back up from the table, and went to my final appointment. 

I arrived back home, handed the book to my wife.  I told her the book started off great, and good luck from there.  I am not about to talk tampons with my daughter.  Having been raised in a house full of women, I would think that I would handle this better.

The Mind Of A Bullied Victim


A couple of years ago, I volunteered at my daughters’ school for a committee that was charged with instituting a new anti-bullying program, called Olweus.  It is an enormous cooperative effort involving not just teachers, guidance counselors, but the school nurse, custodians, cafeteria workers, and parents.  Together, everyone worked with each other to recognize and deal with bullying, and hopefully to prevent it.  The program pushed respect for others and encouraged weekly class meetings to have simple and casual conversations among the class.

To make this program work, there were several hours of training, by leaders and then committee members.  Part of the training involved role playing and brain storming.  Some of us offered our own experiences with bullying.  We talked about the impact that bullying has on a student that often does not get considered.  How is a child who is being bullied supposed to be able to concentrate in the classroom?  I chose that particular moment to give one example how a student cannot concentrate on school work because he is concentrating on something else.  And for the first time publicly, I am telling everyone.

I attended Jefferson Elementary School, which used to be the old High School.  From the very first day of kindergarten I was marked as the smallest and youngest kid, by a boy named Clifford.  He stood at least six inches taller than me and clearly outweighed me.  And that, gave him his reason to begin picking on me, nearly every day.  As I got older, other children caught on to the bullying activity with me.  But instead of helping me, the realized that they were in a position either they would also get picked on, or they could show their toughness, and come after me.  After all, a victory was still a victory.  Soon after that, for fear that I might begin to defend myself (note – it was 3rd grade and I had not given any signs yet that I would defend myself because that is how I was raised, never throw a punch), the bullying turned to gang events, a minimum of three bullies at one time – one to hold me, the other to look out, and the other to asault me, and then rotate turns.  Now, even girls were going to give their shot and see what would happen.  I disappointed no one.  I refused to hit a girl, so it began, getting the shit beat out of me by girls.  And they were not nice about it either going straight with kicks to the balls to start every bout.  I was totally defenseless.  Even on the playground during recess, teachers just walked around looking away so as not to be taken away from their free time.

So, whast kind of student was I and why?  My grades were horrible because instead of paying attention to the teachers, I was busy watching the clock.  And this was all day.  I would watch the clock anticipating phys ed class because no matter what the activity, I was going to receive extra contact throughout the period.  I hated lunch for two reasons.  The first because the walk to the cafeteria was routinely accompanied by being shoved into things like doors or lockers or having my foot kicked behind the other to force me to trip.  Recess of course was just a matter of haning around the teacher monitors as long as I could because it was only a matter of time until I was dragged into this small alcove between the two buildings.  With all the goings-on occurring on the playground, no one could ever hear me in this area.  Even going to the bathroom, or in the bathoom was not safe.

Following lunch and recess, the clock would be watched to see how much time I would have left so I could plan my route home, which had to change every day.  And with the efforts to bully me being a group effort, rarely a day would go by that I would not get caught.  So my planning begun with the fact that I was on the 3rd floor of the building.  Which of the two flight of stairs would have the least amount of bullies waiting for me at the bottom.  Once I arrived there, there were three possible doors to exit from, one at each side, and the front door.  Again, which would provide me the best opportunity of escape?  Once out of the door, it would be a mad dash across the street then having to scout the street in front of the school, which of the two streets and two alleys heading towards home would not have the ambushes waiting for me?  As I got to the alleyway after that choice, if I saw another group of thugs, I had this opportunity to choose another alleyway or street to head down.  Once I got to my street, it was just an all-out run.

The beatings would normally last between five and ten minutes and none would leave anything physically visible.  My bookbag would be torn apart.  And the last thing I wanted to do, was bring the bullying up at home, because that usually followed with a call to my principal, which resulted with a meeting with the bully’s parents and response “not my child”.  And the next day the beatings would be worse.

Jefferson Elementary may have been torn down, and a new building now stands in its place.  But those memories of my elementary education have lasted over 40 years.

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