Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “chemotherapy”

Turning Things Around


As a rule, I am generally a positive person. I have to be. It would be too easy just to be swallowed up by all the negativity in the world whether it be the news on the television, co-workers, or even family and friends. The “deck” has been stacked against me my entire life, but I always found a way to get through whatever challenge was thrown my way. No matter the challenges, being bullied in school, cancer, heart surgery, and now in the later stages of my second divorce, I am always able to find my way through, “rise up from the ashes like a Phoenix”.

At the age of 48, it is time to stop living challenge to challenge. I have always had strong faith in a supreme being (I am respectful to all religions which is why I worded it that way) so that has never been an issue. Physically, as the school bullies found out, I can take a pretty good beating. However, emotionally, it has always been a struggle of the old “one step forward, two steps back.” I would get so far through one crisis just to realize that another crisis had been lying in wait. But, as always, I was positive I was going to get through anything thrown at me. I am ready now to take two steps forward, and push back against anything thrown at me.

As I recovered from my Hodgkin’s Lymphoma, having gained over fifty pounds from the chemotherapy, it was positive thinking and commitment that helped me to get back into physical condition, drop the excess weight. I had done it. But just that quickly, as always, was another set back.

My recovery from emergency heart surgery was no different, just more cautious. But as time went on, again, there were factors standing in line against me. It was discovered that late developing side effects were now coming to the front of my physical condition. And as I have done every time, I have taken them on head on. But over recent years, it has required the help of prescription medications, meaning, it has not resolved my problems, just hidden them. But that is going to be my next post. Right now, I am so pumped up because I think I have finally found the right direction to stay several steps ahead of negativity and finally talk the talk, and walk the walk.

To have a positive outcome, I have had to surround myself with the most positive and supportive people, professional, family, and friends. It sounds simple. I had heard through my life “you can do it” or “hang in there.” That is not good enough. Positive support and reinforcement means just that, constant, all in. Unlike my recovery from my cancer and heart surgery, I am surrounded by people who genuinely want to see me live a life, free from all the forces that try to stand in my way.

I have struck gold in a dietician who has told me, “I’m not going to give up on you”. Evidently something that I said sparked that response. I have gone through three other dieticians to get a grip on my finicky and poor diet choices. And I am heading in the right direction no longer struggling to try new foods, and also eat healthy. I am being encouraged very strongly, with plenty of incentive, to exercise. Yes, the incentive of a healthy body should be good enough, but there are so many wonderful things that are waiting for me. I have been exercising regularly and it is beginning to show. Finally, the emotional part of this journey, dealing with the stress that often comes along with the trials, but also contributes to their effects. I strongly believe that a lot of the medications that I was placed on following my heart surgery were due to the stress I have been under.

A challenge has been issued to me within the next 30 days. It is a realistic goal to me. I can reach this because I am surrounded by people who want to see me succeed. This time, I really want to turn things around.

A Carnival Of Cancers


I would like to dedicate this story to two young people that I talk to about their cancers.  One has just celebrated one year of remission, the other, is approximately a month away from completing his journey.  Both have faced their Hodgkin’s.  One has beaten it, the other is almost there.  I am happy for both of you.  Your experiences during your fight with Hodgkin’s that you have shared with me, are truly an inspiration.  The support that you had from your families, should serve as the example of the support that all patients need to get through their fight with cancer. 

Whether visiting the boardwalks of the shorelines, or local carnivals, it is not uncommon to hear some barker call out to passer-byes to step right up, and win a prize.  While the games are fairly easy to win, the prizes are awarded by some ladder scale from small to largest, and when played long enough to get the larger prizes, come with quite a price.

But imagine if the dialogue went something like this:

“Step right up, come on over, give it a shot, it’s real easy.  Everybody gets it.  Is it going to be small or large?  How lucky you feeling?  And we have a winner!  It’s cancer, but not just any cancer.  Hodgkin’s Lymphoma folks.  He’s got Hodgkin’s Lymphoma!  Who’s next to test their luck?”

Of course this is a ridiculous premise, but I challenge you to find one person, who did not hear these words from an oncologist, “You are really lucky.  If you are going to get a cancer, Hodgkin’s Lymphoma is the cancer to have.”  I will let the doctor off the hook in a second, but for now, imagine, you have just been told you are lucky and that you have cancer.  What would your reaction be?  You have a deadly disease, remission or cure is not certain, but for you, the news is good.

For myself, I was in an office of an oncologist / hematologist.  I had no idea what that even meant.  All of the prior doctors that I had seen had been looking for some sort of cold, or perhaps an injury when one of them decided to send me to this place.  I was not even placed in an exam room, but rather the office of the doctor.  He walked in to the office, around his desk, sat in his chair, and then rattled off an obviously often rehearsed speech.  I have no idea how, but with just the first two words from his mouth, “Hodgkin’s Lymphoma…”, it triggered an automatic response of something I should never have known what it meant.  By the time he finished that first sentence, ending in “rare form of cancer.”, I had already guessed that is what he was already talking about.  Then I heard the word from him, “cancer.”  I knew I was in the wrong place, the wrong patient, the wrong diagnosis.  But he kept on talking.

“Hodgkin’s is rare, but it is also highly curable, at 85%, if you are going to get a cancer, Hodgkin’s is the cancer you want to get.”  I “want to get?!?!”  Seriously?  I wanted to get cancer, so I pressed my luck and came up with Hodgkin’s?  People die from cancer, and he is telling me that I am lucky?  Pardon me, but are fucking kidding me?!?!  I did not want cancer!  Let me be clear, I did not want it.  I did not wake up that morning, and make a choice between buying a lottery ticket or getting Hodgkin’s.  Clearly, winning the lottery, that would have required luck.  Cancer kills.  How is that lucky.

Now as promised, I have to cut the doctor some slack, but hopefully those who are reading this, and have been in this situation, not just with cancer, but any serious crisis, print this, and give this to the doctor to read.  Like I said, I am not going to hammer the doctor.  Let’s face it, next to a cardiologist, the oncologist has to deal with one of the most grim disciplines of medicine.  And if they have been practicing long enough, the tended to plenty of patients, whose prognosis were definitely more grim than today.  So there may be an oncologist who may not have the best or happiest bedside manner.  But hopefully we can get it across, by passing this on, there is no such thing as luck with developing a certain cancer, or how advanced a cancer is compared to another.

I would rather have had the doctor say, “I am sorry to tell you, that you have cancer.  Here are the statistics, and here are the modes of treatments used to treat it.  I am going to do everything I can to put your cancer into remission.”  It is that simple.

I was not lucky.  I was diagnosed with cancer.  I was treated with chemicals and radiation that were toxic and difficult to go through.  I was left with some permanent after effects from those treatments, some serious, some not so much.  The last thing I consider myself today is lucky.  But what did happen?  I tolerated the treatments.  My body endured.  My physiology was able to handle the all-out assault of the chemotherapy and radiation therapy.  This was not luck either.  My body did what it had to.  The treatments did what they had to.

Please, do not get me wrong.  It is no minor accomplishment that I am here twenty three years later.  I often wonder how the other three kids who were treated with me turned out.  Progress in the diagnostic techniques and treatments of not just Hodgkin’s Lymphoma, but many cancers has advanced so far in the last two decades, and from the times before I was treated.  Survival rates for Hodgkin’s has increased from 85% to 95%.  And there are many cancers that have achieved 100% remission or cure.  In spite of the positive direction that cancer research has taken in two decades, I know better than to tell the many newly diagnosed patients or those currently in treatment that they are “lucky that they did not have to go through what I did, or those before me.”  Patients today are still being diagnosed with a deadly disease, high cure rate or not.  We are not lucky.  We simply hope that we have made the right decisions in the doctor, the treatments, and have the right support team with us.  this is not luck.  We simply count on everything to go as the books say to do.

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.

Post Navigation