Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Hodgkin’s Disease”


Bravery is defined in Merriam-Webster as courage.

I decided to look this up today.  A co-worker was having a conversation with me, coming to find out everything that I had been going through in just the last several weeks.  And his comment to me was, “You’re really brave.”  And I looked at him like I was almost hoping for a hint of sarcasm or even some foolery.  But for once, he meant it.  And then he repeated it, “You are brave.”

The first time I heard it, I was uneasy.  I was hoping the conversation would end, but when he said it the second time, I knew that I had to deal with it.

In my life, I am hard pressed to find even one instance in my life where I could be defined as brave.  I have never fought in any armed service.  I have never broke up an attempted bank robbery.

But when people find out that I have beaten cancer, had open heart surgery, two cases of pneumonia (one with sepsis and the other double pneumonia), kidney stones, all kinds of late issues from my treatments, I get, “You are brave.”

When I think of “bravery”, I think of men and women who run into a burning building, police officers who put themselves in harm’s way every day, an airline pilot flying a human missile loaded with hundreds of lives, a teacher shielding her students from a lunatic’s bullets.

No, I am not brave at all.  I simply did what I had to do.  I have two beautiful daughters who I know love me so much, it would devastate them to lose me.  I have no choice but endure if my body and mind are capable of doing so.  In the second half of my life, I have met so many people who have faced relapses of their cancer, multiple cancers, those who struggle with their survivorship from the treatments that saved their lives, and sadly, those who lost their battles.

I have always said that I would not go through anymore treatments if my Hodgkin’s Disease came back, that is, until my daughters came along.  One of my dearest friends has faced nearly 50 surgeries all having to do with her surviving her cancer treatments, this along with a battle with a secondary cancer.  With so many close calls, not just near death, or in some cases, flat lines, she continues to trudge on to this day, not only a proud mother, but the happiest grandmother, something that she never thought she would ever see.

I do not know how she would react if I told her that she was brave.  I know on occasions when I have talked with her on the telephone, I have told her that I was speechless for words to how I felt with her continued struggles and survival.  It would be easy for her to give up I think.  She has been through so much.  But the fact is, she has not given up.  It is with her example that I can never make that decision either.

And so, I am watched periodically, whether month to month, quarterly, or annually.  There are things that have been identified and can be dealt with.  I go to my appointments not afraid, but confident in my caregivers that things will be dealt with sooner than later.  That is not bravery, that is trust.  As for the all-of-a-sudden stuff like the pneumonias, the cardiac issue, some kidney activity… a little luck does not hurt either.

Thoughts On My Back

This one is for you my friend.

As a long term survivor of Hodgkin’s Disease, cancer, I have learned alot medically, and about my survival.  I have learned about risks, protocols, and needs.  I have been through much worse in my life with radiation and chemotherapy.

If you have never been a patient before, there are a lot of things that go on in a patient’s mind, at various points of procedures.  The mind races as people hustle around you, roll you, and all of a sudden choose that moment in time to mass introduce everyone to you, which if you are going under anesthesia, will not remember them anyway.  Your mind is consumed with what to expect following your procedure.  Almost as in real life outside of the hospital, inside, I do not take the time to look around, notice my surroundings, relax, enjoy, appreciate.

This story is dedicated to my good friend who takes notice and appreciates her surroundings.  This is more than just a child laying in a grassy field looking up at puffy skies.  This is a grown woman, possibly with things of her own on her mind, but as she travels, she takes photos and speaks about the very details that she notices during her visits.  She slows down.  She enjoys.  She relaxes.  She appreciates.  And then she recalls, in vivid details.  So Cathy made the suggestion to me, as I have seen my share of ceilings, what do I see?  What do I think about?  Interesting that I had never really given it much thought until now.  But with a pair of procedures coming this Wednesday, I started thinking.  Hmmm…

So yesterday, I payed attention to my first ceiling.  I say the first ceiling because once I was rolled into the procedure room, all I noticed were the multiple monstrous digital flatscreens.  If my throat did not hurt right now, I would probably grunt like Tim “The Tool Man” Taylor.  (All together, I know you are doing that right now.)

But this is the first ceiling I looked at, my holding room.  Wendy looked at me funny because I was staring at the ceiling, and she asked me if I was counting ceiling tiles.  When I told her “no,” for some reason, she referred to the light grate which of course was about one and a half foot wide, and two feet long.  The argument, how many squares total were in the light grate.  If you have Facebook,  then you have seen this puzzle several times where you have to count how many squares actually exist.  Initially, it looks like sixteen or something, but then you look at the squares that are formed by the other squares and so on, the number comes out to be in the twentys.

We never did get to finish calculations because just then the techs came in to roll me to the procedure room where I would undergo my first colonoscopy and second endoscopy.  You would think that would have been on the forefront of my mind.  But thanks to my friend, the techs were now standing there, staring at the ceiling.  Counting.

Okay, seriously, I want to get this done and over with, the colonoscopy, not square counting.  I will do the math at home, or maybe I will not.  Maybe I will give it a shot for my next procedure.

For anyone wondering how many squares there were?  There were six across, and seven long.  So the answer is not 42.  You do the math.

February 13, 2013 – The Colonscopy

There is no video diary of this process.  I am not a Kardashian.

My wife and I arrived up in NYC the afternoon before to locate our hotel room and then me rush to an appointment.  There is a hospital that provides a hotel at discounted prices, so for $250 for the night, the price was not bad.  And no bed bugs. 

Tuesday was Fat Tuesday.  The Pennslyvania Dutch also call it Faschtnact Day.  Faschtnacts are the yummiest, most fat containing, sugariest balls of deep fried dough, called a donut, that if made properly cannot compare if Krispy Kreme and Dunkin Donut were ever able to have offspring.  But for the PA Dutch, these donuts are also a sign of good luck.  It was difficult for me yesterday because I was officially on the clear liquid diet. 

I could not have them, but I wanted to make sure Wendy did, but they were only available by the dozen.  The question was, what to do with the other eleven?  I wrote before about the concierge at Sloan Kettering, Nick, also known as “The Ambassador”.   I thought who better to “enjoy” some good luck, but the man and his co-workers who everyday, greet each and every one of us, no matter what our reason for being there, with a smile and clear welcome.

As I approached the shuttle to get to my appointment at another MSKCC location, there he was.  Nick had actually been at the main building for a computer class that he had to take.  I went right up to him, and handed the box to Nick.  You could not mistake the sweetness because the smell of the donuts coated completely in white powdered sugar just wafted from the box.  He was so touched by the gift as I told him, it was just my way of saying thank you for all the years of “How you doin'” and “good luck today” greetings.  I told him that the next day was important to me, and unfortunately was fasting for it, and could not enjoy the Faschtnacts.  Lightheartedly, I told him, about the good luck that was to come with eating them, my dilemma, but that my luck would not be jeopardized as long as he would enjoy a donut on my behalf.

We rode the shuttle together over to the other location.  Our conversations were a continuous praise of each other’s importance to everyone that was in our lives.  I praised Nick for the many people he helped to put at ease as they entered the hospital for the first time, the most scary time in their life.  Nick told me he was proud to know me, for being an inspiration from my longevity to my determination, to courage I display, and the hope I want everyone to have, to overcome the trials.  I can accept all of the descriptions except for the courage.  I do not feel brave.  I do what I have to because I want to live.  I want to be there for my daughters.  We traded comments back and forth the entire ride.  Nick is such a great guy, and if you would ever have the unfortunate need to be at Sloan Kettering, I hope that your the first person you meet is Nick.  From his first interaction, the tone for the rest of your day will be set, as will the rest of your appointments.

With Valentine’s Day two days away, and no chance of any romance (flatulance is not a phermone, it is funny, but not a turn-on), no romantic dinner, I did the next best thing o the way back to the hotel.  I stopped at Crumb’s bakery for a red velvet cupcake.  If there is one thing I know about Wendy and special days… it is all about the cake.

I arrived back at the hotel.  The schedule had been set 3:00 appointment with Dr. F.,  and had to begin the “cleansing” process at that point at 3:00, and then 5:00 bottoms up.  I had to drink 8 ounces of the concoction that I mixed, part Sprite, and the rest Miralax.

The instructions on the bottle of this mild laxative said to take 17g and mix into fluid.  I had to drink 237grams.  I had high hopes mixing the powder with soda (pop), with a blend that would be familiar and simple to drink.  Now I ilke soda.  It is not unheard of for me to drink up to three liters a day.  But that is clearly because I had time to drink it.  But THIS, I had to drink an 8 ounce glass every 15-20 minutes.  As much as I enjoy drinking my carbonated beverage, I did not at this moment.

To be honest, it was not bad at first.  I chugged the first few glasses.  Maybe a burp.  Nothing down below.  So as another 15 minutes went by, did another shot of drinking a “Sprite Shake”.  Now I was finally feeling something grumble in my stomach.  It was time.  I wondered how long I was going to go through this once I was done drinking.

This was not the ideal romance Wendy had in mind approaching Valentine’s Day.  Watching me set the alarm for every fifteen minutes, drink, race to the bathroom, and repeat.  I’ll spare the rest of the details, because even as a man, it stopped being amusing.  I finished drinking around 9:00, and finished my trips to the bathroom around 10:00.  To be honest, I did not have the abdominal cramping that I expected and had been warned about, bloating sure, which is to be expected from drinking that much soda.  But at no time did I have to grab the “Oh Shit!” bar on the wall along the side of the toilet.  You know what I am talking about?  That metal pole you grab onto thinking an ass-blast is going to launch you off the toilet and your holding on for dear life will prevent that from happening.

The orders were not to have anything to eat or drink after midnight.  This was no problem, off to sleep I went.  I woke up the next morning fairly early, for no particular reason.  I was not nervous or anxious.  As usual, I was not hungry.  And there was also no urgency to get to the bathroom.  I got cleaned up, then woke up Wendy.  The plan was to get in, have the doctor get in, and get in, then get out.

I had gone over everything with Wendy, Plan A, Plan B, and though hopefully never have to be considered, Plan C.  Wendy had been designated my legal proxy in the event of being incapacitated along with making sure that my living directive be followed should anything happe.  From the registration area, we had a small wait in the reception area, and then my name was called.

I got changed into something less modest and climbed up on the bed.  In came the tech to insert the IV into me.  As I do with anyone chasing me around with a syringe or needle, I immediately go into “begging” mode.  I call it begging because I do not do well with needles and after the third or fourth attempt, I have had enough.  My veins have been destroyed by the chemo I had years ago.  So techs must go beyond the surface veins that had been used.  But of course, most techs do not like being told how to do their job.

This nurse was different though.  She had somewhat of a dry sense of humor as I found out.  Never watching the needle being inserted, Iwait for the “taste” of the salene before I begin to breath again and release the thumb nail from the forefinger of the opposite arm being used.  Realizing that she was successful, I told her thank you.  She said not to, because she had to do it again.  I have been through dozens of procedures and I have never had to have another line put in for something this routine, but she made it sound like this one was not viable.  But I saw the salene flowing, and she had left the butterfly needle catheter in my hand.  This lasted about a minute.  Then the joke was over.  In came the anesthesiologist.

There had been some concern from the last procedure that I had done.  Something had been noted that I did not tolerate the sedation prior to the anesthesia, so I was just going to get anesthesia this time.  Puzzled, I offered any kind of suggestions as to what could have been behind the report comment, cardiac, reflex, anything.  But there was no explaination.

Then I was wheeled off into a fantastic room, surrounded by flatscreens, machines, and several people.  My doctor came in, introduced herself, asked if I had any questions, when I said not, before I could get any last-minute immature comments about what she would find up my behind, the anesthesiologist had the mask on me, and I was out.

That is right.  You are either in “twilight” or out cold.  Either way, you have no idea what is going on.  So, down my throat she went with one camera, up the butt she went with the other camera.  No, she did not make any mistake on which one to use.  No, my breath did not smell like shit when I woke up.  No, there was no race to the middle of my intestine or ceremonial knotting of the cameras.

I woke up in recovery.  No fuss.  No muss.  The doctor came in, told me her findings and what had been sent to the labs for examination.  But both endoscopy and cystoscopy went without incident.  And she was confident, there would be no lingering effects like infection (something I am actually prone to).  The only thing I might experience was a sore throat which I do have, and perhaps some cramping which I do not.  So now I wait for the results.

One bad note, the colonoscopy will turn out inconclusive.  As it turns out, the amount of laxative I ingested was not enough, to “cleanse” me out.  Evidently, my bowel habit, rather, lack of one (yes, start the comments “I’m full of shit”, “that’s why my eyes are brown”, my system was not cleaned out enough to get a decent scope done.  Short of going up my behind with an old-fashioned egg-beater, I cannot imagine what I am going to have to go through next year, she has already ordered another colonoscopy to be done, to get cleaned out.  But evidently, it can just might provide me with the experience I did not get the prior night and thought I would.  At least I know what to prepare for.  This just gets chalked up again, to yet another issue of late effects from radiation and chemotherapy treatments of my Hodgkin’s Disease.

In conclusion, I would like to settle some comments that either I have made, or others have made in opposition of getting a colonoscopy done.  Number one, it did not hurt.  Number two, I did not wake up farting KY.  Number three, surprisingly, I did not wake up gay or homosexual (a popular myth of phobics).  Yes I do believe that orifice to be an exit not an entrance, but for this one test, for me to be determined next year it seems, it is important.  In all seriousness, I have lost too many friends to colon cancer, and know many more that are dealing with it.  Being a cancer survivor and having gone through the particular treatments that I did long ago, I am at risk for a secondary cancer, such as colon cancer.  I “manned up” and got it done.  If your doctor recommends it, do it.  Hopefully all you will have to deal with is peace of mind.

I had recieved an email that included a column written by Dave Barry and his experience with the colonscopy.  Barry’s experience was not much different from mine.  What I like that he included in his column, were comments supposedly made by other patients while undergoing colonoscopies.  To which I end with number 13 as I feel it is appropriate for anyone needing this defense ever, in their marriage or relationships.  It has been confirmed my head is not up my ass.

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