Paul's Heart

Life As A Dad, And A Survivor

More Than A Frog In The Throat

One of the symptoms of my late cancer treatment effects deals with swallowing.  You know how uncomfortable it can be.  Whether you have had tonsilitis, or sore throat, it is no fun to swallow.  These are usually caused by viruses, or screaming at games, cigarettes, or some other illness.

In February of 1989 I made a decision to treat my Hodgkin’s Disease with radiation therapy.  It was going to be the least inconvenient with upcoming nuptuals.  But the way it was explained to me, it could be just as rough to deal with as the chemo.  The amount of raditation to be used was no small amount and would exceed four times the life time maximum exposure.  In the long run, not much was known about the possible side effects, except possibly  endocarditis (enlarged heart).  In the short run, it was going to be worse than a sun burn.  As I found out, much worse,  My neck and chest were cooked.

Care had to be taken to prevent injury and infection to the treated areas.  Special creams without alcohol could be used to help keep my skin supple.  That was the external protection.  I had no idea about the inner workings and how those systems would be affected.

A little over two years ago, I noticed that I was having minor difficulty swallowing my food.  It basically took some extra effort to get the food to go down.  But over weeks and then months, those efforts no longer worked as the food would often remained.  This affected my appetite as I no longer wanted to eat and risk choking.  I knew that I had to get calories into me, so I did what I felt was best, lots of sugary drinks, Coke mainly and melting Hershey Bars.  But as the swallowing got worse, I moved up to Milk Shakes hoping that would help expand my throat some but only eased the discomfort for a short while.

Just as my symptom increased, I had begun an agressive local campaign for school board.  This helped me to keep busy, not interested in eating, but still, I had to get the calories into me.  Towards the end of the campaign, I had been reduced to drinking water, and even that was difficult.  I was drinking Boost and other supplements.  In the mean time, I had been to three different disciplines to investigate the cause, an ENT (Ear, Nose & Throat), a speech pathologist, and a GI specialist.  All took turns trying to figure the cause, clearly something there, just not sure what.  During the endoscope, polyps had been seen and removed and high acid levels in the stomach were noted.  But these were not the cause of the swallowing issue.  However, the scope used, along with yet another prescription had seemed to take care of the issue quite comfortably. 

Ten months later, the issue appears to be returning.  Today, I will be heading to MSKCC to meet with the Speech Pathologist to start the process over again.  She will probably have me start doing exercises again.  Manhattan is only approximately a two hour ride from our house, but with traffic, tolls, gas, and donations to the NYPD because they just love the “out of state” tags on my car, it gets to be quite an expensive doctor appointment.  So, as I normally do, I travel by public transportation.  It takes me twice as long in time, but saves me more than half in cost.  Today, I travel by train to train, to train, to subway, to shuttle and back.

All through my cancer history and and any procedure since, I have developed a bit of a superstitious routine.  And one routine when I travel up to Memorial Sloan Kettering, is I stop at the outpatient clinic, whether I have an appointment in that building or not.  I immediately walk into the lobby and am greeted with one of the biggest smiles, vocal “how you doin””, from someone by first appearance you would never suspect, especially of a stereotypical New Yorker.  But Mr. Nick, also known as “the ambassador”, is not stereotypical.  He is so calming, so encouraging, and so supportive in an environment that is both intimidating and scary.  On your way out of the building, he is also known to offer you some relaxation tips such as taking a walk in Central Park or making a visit to Grand Central Station to forget about things for awhile.  In my case, with multiple appointments, I go in to see him, to make sure I am going to all the right buildings at the right times, but also because that is what I have done every day.  All I know is that it works.  I go home just as I arrived.

I am familiar with the doctor as she is the one that I saw during the last issue with my swallowing.  After discussing my symptoms, and revealing some other recent incidents, she feels it is necessary to involve my gastroenterologist and ENT doctor as she suspects it goes beyond my struggle with swallowing.  I have another procedure already scheduled and because of the distance I must travel, it is felt that I can actually schedule both in the same day.

I have gotten quite good at not looking too far ahead with things.  That is the good thing about being followed up as closely as I am.  When a person is done with their cancer treatments, it is more than common to want to “never think about it ever again and move on”.  But in reality, no matter what the illness or malady, it is always going to be better to catch anything early.  Between my primary care physician, the doctors and nurses at Memorial Sloan Kettering or NY Presbyterian, I am so confident that I am in good hands.

It will be a short while until the scheduling is taken care of, but stay tuned for my post called “The Pig And The Spit” which will explain what I will go through that day.

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