Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “chemotherapy”

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.

Jennifer’s Story

One of the first things that I wanted to do once I was done with my chemotherapy for Hodgkin’s Disease, was to find some way to “give back” to that which saved my life.  I never studied to be an oncologist, so that was out.  The American Cancer Society had been rolling out a relatively new program called Cansurmount.  Cansurmount was a “peer to peer” program that matched cancer patients by type of cancer as well as other factors such as age and gender.  The goal was to help patients deal with their illness by realizing that others had gone through it before themselves.  There was training involved which mostly involved learning to listen, listen real well.  Patients needed two things, one more so than the other.  The thing that cancer patients needed was to be heard by someone who understood what they were going through.  I know I personally dislike the expression “I know what you must be going through.”  No, you do not.  The second thing needed, is empathy, to be told the way that they feel is normal, and to be inspired by me, an actual survivor.

Having completed the training course, I was good to go.  In just a few short days, I had been given my first patient.  Her name was Jennifer, a 14 year-old student with Hodgkin’s Disease just like myself.  As I read through the profile, I thought to myself, “this won’t be bad at all”.  But then I got to the prognosis, which I was not prepared for, “terminal.”  I could not believe it.  Right from the gate, I was given a child who had nearly the same cancer as me, only she was going to die from it.  I had barely come to terms with my Hodgkin’s, and only recently celebrated my remission, but had to reign it in when I met with Jennifer and her family.

I met with Jennifer’s mother first to tell her what Cansurmount was all about, and then, who I was and what I had been through.  She never did ask me, how soon my Hodgkin’s Disease had been discovered to allow me to go into remission, when her daughter, only aged 14, would die from it?  There was not one visit that did not occur when the thought “why her, and not me?” did not go through my head, or wonder if her mother felt that way.  This is called “Survivor Guilt”.  It is something that I have carried with me over 22 years now.

My visits were weekly and lasted anywhere between a half hour to an hour.  Most of the times, it was Jennifer’s mother asking me questions, still looking for any kind of hope that things would turn out differently for her daughter.  Jennifer barely said more than “Hi” to me.  We just sat there, watching whatever television show she had on at the time.  This routine would go on for months.  At times, I would forget, that Jennifer was not going to survive.  She had not been told of her worsening condition.  She was only told of things when she was going through treatments or doctor appointments. 

She would celebrate her 15th and 16th birtdays.  For her condition to be terminal, this was taking a long time.  But there are different types of Hodgkin’s Disease and there are different types of growth.  Jennifer’s was the slower growing type.  For Jennifer’s 16th birthday, she had made a very unusual request.  Though she had not been in school for a very long time, she longed for her vo-tech education.  This was the year she was supposed to learn to drive the fork-lift.  I do not recall her talking about her prom as more treatments were beginning to take their tole on Jennifer.

By Jennifer’s 17th birthday, her condition worsened dramatically.  The family made the decision to bring hospice in and asked for my help to arrange this.  After all this time, all the visits, I was finally making a contribution to Jennifer’s care.  And then it was time to tell Jennifer that she was dying.  Her family broke the news to her, while I just sat there, tears welling up.  Jennifer talked about wanting to graduate from high school as the last thing she wanted to do if she could.  There was a brief moment of silence, and I took that opportunity to tell Jennifer and her family about the hospice program, the representative that would be coming, and what to expect from them.  In all the visits, Jennifer barely spoke to me, at least nothing that would have confirmed that my visits with her were nothing more than taking space in her living room, which now its furniture included a hospital bed.

“You’ll still come and visit with me won’t you?”  At that moment, I could no longer hold back the tears.  I was certain that I had meant nothing to Jennifer and here she was concerned that I would stop visiting her just because hospice would be taking over.  I promised I would stay with her.  A month later, Jennifer got a surprise, it had been arranged for Jennifer to graduate from high school, ceremony and all.  It was a moment that I will never forget, because with her fate just before her, she had given a smile that would last forever.

Soon after, her condition worsened and had to be hospitalized.  And then she let go.  Her pain and suffering were over, but it was on her terms.  She got to do the few things that she wanted to do before she passed.  Jennifer touched so many lives and is someone I have never forgotten.

I was dealing with several other patients at the time of Jennifer’s passing, but took her death so hard, that I needed to ask for some time to deal with my grief.  It would be unfair to my other patients, and I defnitely did not want my actions reflecting on them.

I returned to Cansurmount for several more years, and then the internet came along, and found that I could help so many more people, which is where I am today.  I participate in several blogs and internet support groups, have given survivor speeches, and held many one-on-one conversations with people.  I am hoping to see the day when all cancers are cured, but for now, we cannot forget about those who still must fight and make sure we meet their needs.

Time Travel – Changing History

H.G. Wells did it.  Sam Beckett did it.  Bill and Ted did it.  Superman had to do it for Lois.  Even Bart Simpson has done it.  Time travel.  All had the desire to go back into time to either research or alter time.  Each had their own mode for making the journey – an actual time travel machine, Ziggy the computer, a phone booth, a cape, and as a parody of “Back To The Future,” a DeLorean complete with Christopher Lloyd.

The concept is simple.  Go back in time.  Fix what needs to be corrected.  Come back to the future.  Of all the time travelling media, Sam Beckett in Quantum Leap was my favorite.  You see, when you change the past, you change the present and the future.  Beckett had to be careful so that he only changed the history of the person he was sent to help.  And there were times when it was extremely personal for him, like saving his wife, or even stopping this project which he found out eventually was much bigger than the invention that he created.

There is a different way to change history though, without going back through time.  We do it as children, and we often live through it as adults.  We study history.  The idea of studying history in one aspect, is to not repeat it.  Wars.  Space Shuttle disasters.  Tough economical times.  Medical crisis.  We study the examples so that we learn from them, and do not repeat them.

When we are born, our path is set.  There is a natural progression to aging, infancy to toddler, toddler through child, child into puberty, then to adulthood, and senior status.  And there are things that we know, are likely to happen to our bodies as we get older and our bodies get tired.  But just as travelling back into history to “fix” something, for me personally, the cancer diagnosis being the time traveller, forever changed my present and future.  There are bad things that came of it, but there are also good things that came of it.

For example, when I went through the radiation treatments, there were some things that were known that could happen as a result (called a side effect), but there was so much that was unknown.  Of course I knew what could happen.  Mr. McGee could make me very angry and I would go through my wardrobe very quickly not to mention look like I belonged on a can of vegetables (Incredible Hulk reference for those that need it).  Well, I did get a lot of radiation, too much in fact.  At the time, it was what worked, that is all researchers knew.  In today’s treatments, doctors know that they can use much less and by that, I mean ALOT less and have just the same effect or better.

So as I said, I received too much radiation, amounting to four times the lifetime allowance of exposure.  There are many who work at nuclear power plants that are not exposed to what myself and others were exposed to.  The sad thing, I know plenty more people who were treated with much more radiation and different types, like Cobalt.  We have all been told as children that radiation is bad – “don’t stand too close to the TV”, “don’t stand in front of the microwave”, “cell phones cause brain cancer.”  Not only does it treat cancer, and cure cancer, but it can cause cancer.  That is why if you are smart and able, you put sunscreen on your body.

Well, just like on the outside, when you get sunburned, with radiation treatments like I received, the burns were on the inside as well.  To my knowledge, it is something that I will always have.  So the radiation and chemotherapy start doing damage to my body, inside and out, which gradually gets worse over the years.  To understand, if you drive a car that has one tire that is not inflated properly, do you think that will affect the other tires?  The overall performance of the car?

As it is, that I believe about my body.  With the first lymph node that was removed and biopsied, so my body had to adjust.  With the staging laparotomy, my spleen was removed leaving my body challenged forever against infections and contagions.  When my heart bypass surgery was complete, blood was flowing at the rate once done before, my body parts not used to.  The list goes on.  My body’s natural physiology was changed back in 1988.  As far as I am concerned, everything that is happening to me today, is because of the things that happened from that time on.  And so far, this has been confirmed.

So given the chance, would I go back in time?  Knowing what I know now, would I take the opportunity to change my mind to any of the procedures, or even to allow the doctors to treat me?  Given the two choices that I had, death or most likely cure, how would today be different for me today? 

Hodgkin’s Disease has been one of the more curable forms of cancer for decades.  Treatments have gotten better, safer.  But would I have had that much time to wait decades for a cure that would not have had the impact on my health today?    I have two very very good reasons to not even entertain that option. 

Mad and Em 12813

All I can do now, is make sure that any more decisions do not give me cause to want to go back in time to correct a regret.  Then again, what if I already had gone back in time?  What if…

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