Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “treatments”

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.

Man Up! The Big C (Colonoscopy).

Consumer Reports recently submited a report stating that  only a few cancer screening tests were truly necessary.  The writer offers excuses such as not beneficial, causing unneeded scares and paranoia, and financially not worth it.  As a cancer survivor I know all too well the importance of catching a developing cancer as early as possible.  There is no early detection for Hodgkin’s Disease and it is rare enough that it is difficult to diagnose and often misdiagnosed by something as simple as the common cold (yes, that was my original diagnosis).

When all is said and done, try explaining to a family who in spite of health benefits cannot afford the extremely expensive treatments because the cancer diagnosed was not caught earlier by detection and could have been treated at a less cost.  There are actually some in our society who would even make the argument that too much money, and too many tests get performed.  I know that my heart surgery, would not have cost over $100,000 had I been followed up as they do today for late effects because the issue would have been caught sooner and perhaps a bypass would not have been needed..

For now, screenings are available, and they do benefit us.  And we should have them.  Women have their boobs smashed in searching for breast cancer (a service that I was willing to perform free of charge when I was younger and single).  They even climb up on a table with a papercloth gown exposing their girly bits once their legs are placed up in stirrups.  Of course, there are skin cancer screenings.

But when it comes to men, we are a little funny about that stuff.  We have a lot more confidence in our health that we find such things as prostate screenings and colonscopies are unnecessary.  The last thing we need to tell us we are sick is having a finger or camera shoved up our ass.  Besides, and I am not saying that I believe this, but there are men that do, that it might have some… well… homosexual connotations by having these exams done to them.  Me personally, I have always been of the mindset, I do not want anything going in through the out door.

Again, a personal note, I know dozens of people who have battled colon cancer, and too many that have died.  My cancer treatments that I went through run the possibilities of developing a secondary cancer, perhaps colon cancer.  A colonoscopy would be beneficial to me.  In fairness, my doctors have not pushed me until now, my friends urged me years ago.

I love this blog, Paul’s Heart.  I am not about sensationalism, so I have no plans of videotaping my colonoscopy.  If I end up being this major baby and I got to destroy it and cannot, I do not want that leaked out.  But with my wife by my side, she will help dictate the things that are done, said by the staff, said by me, recovery, and trip home.

That is right, in just one and a half days, I will be going through not only a colonoscopy, but completing the “pig on the spit” image, an endoscopy.  I have had an endoscope done before where they go down your throat.  It was no big deal.  And after having gone through a cystoscopy (putting a camera up the manliest of parts) done, and that they made me do without anesthesia, never again I tell you.  But it has prepared me that I can handle the colonoscopy.

So what has changed my mind?  What are the risks for and against?  I have lost too many friends to colon cancer.  My body was exposed to too much when I was treated for Hodgkin’s Disease.  Contrary to a magazine that should probably stick to writing about microwave ovens and stereo systems, I have two of the most important reasons to pursue any cancer screening available to me, no matter the results or the risks, my daughters.

I know the risks involved with a colonscopy and an endoscopy.  I also know the risks with my past health history.  But I am getting these done in the best facility I have faith in.  I believe I have the best doctor performing these procedures.  And though these are fairly common procedures, something can go wrong.  I have faith in the doctor and her team that if something does go wrong, I am in the best possible place to handle such.  I can handle any more of a diagnosis I may get, or be completely revealed that all I have to deal with is from the scan last week.

The rest is up to me.  I need to follow the prophylactic care prescribed, and the caution I am given in my recovery.  Other than that, it is up to my body and its physiology, of which I realize I have no control how things act and react.  My plan is to be back here by Wednesday night.  And though I have no intention of becoming the colonoscopy spokesboy, I do anticipate being able to say, it was “no big deal” and glad to have had it done and be sure.

Time for me to “Man Up.”

Does Size Really Matter? – Deciding On A Health Facility

Memorial Sloan Kettering.  The Mayo Clinic.  MD Anderson.  University Of Pennsylvania.  The list goes on and on for the top hospitals when it comes to cancer treatments.  There is a different list of facilities when it comes to heart surgeries, pulmonary issues, and so on.  Many of our nations “best” hospitals are “teaching” hospitals, meaning that they are more likely to have the current diagnostic tools and treatments available.

I have taken quite a few moments to decide what hospitals to be taken too, of course ulitmately, I am at the hands of my wife to honor my wishes.  The closest hospital to us just also happens to be the last hospital in the world I would ever want to be taken to.  It has the worst reputation for cleanliness and sterility, in other words, you have a fairly good chance of going home with MRSA.  The longer you stay in that hospital, the better the chances of contracting MRSA.  So it is not necessarily a good thing if a hospital keeps you longer to recover from whatever took you there.  The reason that my wife insists on taking me there?  It is the only way that my daughters would be able to come and visit with me as transportation time alone would be an additional hour and a half.  On a school night forget it with having homework.  So, in that regard, I appreciate being local.  It is a smaller hospital, which recently had been bought out by a larger network, still not on the national level, but the buyout has been expected to improve the quality of the local facility.  I am just not sure that it has.

When I dealt with my Hodgkin’s Disease, I was not really aware of all of the “big” network and teaching hospitals available to me.  I did believe that if I were to go to any of them, besides the great distance, I was not sure that they could give me emotionally what I was going to need, that I would be treated just as a number.  Personally, I needed more than that.  The doctor that I chose worked out of a small network, but more importantly, as all cancer patients probably had the oppportunity for this, I knew a patient personally that he cured, my grandmother.  Granted, she was treated for breast cancer, but he saved her life, he could save mine.  The big risk I took by doing this, he was an older doctor, so there was a chance that I would be treated with older modes of treatment and not the most current available.  But I believed that if I had the confidence in him, I would have confidence in the medicine, and that would get me through.

At various points in my life, I would end up in the hospital and always felt comfortable with the hospital that I grew up near.  It has become quite the network and one of the best in the country.  So when I had some uncontrollable bleeding from an area that no man ever wants to see blood coming from, it was only natural that I went to that hospital.  When it was determined that it was not cancer or cardiac related (yes, blood in the urine can be attributed to a valve issue with the heart), but rather a kidney stone, how quickly that stone situation got resolved depended on where the roaming kidney stone unit was and what day.  Yes, hospitals in my area do not have their own “lithotripsy” machine.  The first time that it would be back at this hospital would be in approximately two weeks, however, it was going to be back in town the coming Tuesday at a hospital that I swore I would never set foot in ever again.  My grandmother had passed away in that hospital, and while it was not their fault as to the cause of death, I did have a problem with their methods of convincing people the importance of extending their terminal lives at the expense of their dignity.  As far as I was concerned, this hospital tortured my grandmother during her dying days.

But for anyone who has ever had a kidney stone, or gall stone for that matter, no one will deny the pain level to drive a six foot 300 pound giant of a human being into a fetal position in pure pain, than a 4mm stone.  I needed to have this resolved before the stone set to travel from my kidney.  I was going to have to have the lithotripsy (shock-waving the kidney stone into obliteration), at this hospital.

Now let me tell you about how small this hospital is.  I was the first scheduled appointment that Tuesday morning.  Now remember, this is a fully functioning hospital.  It also evidently has hours of operation.  So the security guard unlocks the door at 5:30am precisely, and I am already third in line.  I cannot see what is happening, but I do see a lot of head-shaking.  Just like that, I am called to the receptionist and begin my admission, or the process that the hospital will be using in place of that procedure.  You see, when I offered them my driver’s license and insurance card, they told me that their computers were not operating.  They did not state if it was expected to be a long drawn out process or not.  I stated that I had a 5:30 procedure scheduled so it was urgent that I be registered and they offered to make a photo copy of my indentification.  Fifteen seconds later the woman behind the desk came back and said that their copying machine was not functioning either.

Did I mention that I did not want to be in this hospital in the first place?  And so, without any identification, which I had to store in a locker while I was in for the lithotripsy, I was escorted into a room, where I would be anesthetized, with no identification, no hospital bracelet, nothing.  And so, the procedure went on, because I could not risk returning to the state of pain that the pea-sized stone had been causing me.  And to add insult to injury, they actually allowed me to sign myself out of the hospital later that morning, totally unattended.

I realize that the last example was an extreme case.  But it did happen.  And I went against my gut feeling in being treated at this hospital.  I got lucky compared to how this episode could have turned out.

My heart surgery, that was a totally different story.  I happened to be at that hospital in a connected doctor’s office.  I was already there, but I was already aware that the hospital had a good reputation.  But even that reputation is limited when it comes to long term cancer treatment effects.

When I found out, that I was not done with my cancer history, I had the major decision to make.  And it did not even come down to the biggest hospital or the hospital that made me feel all snuggly and warm.  I needed a network that had history, studied long term side effects.  My prior posts have gone into great detail on just how urgent my decisions can be.

As you can see, it all depends on the situation, do you go with the big network or the little hospital.  Does size really matter?  To some it does, to others, it’s what you do with what you know.

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