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.

2013 Goal To Be More Informed, More Funny, More Inspiring


This year, I want to take this blog up a level.  I want go into my stories in alot more depth, a lot more personal.  I have a various amount of subject matter from Adoption, Bullying, Education, Cancer, Heart Disease, Emotional, Parenting, Relationships and so on. 

Our health is often scary, especially as we get older.  And as many readers have experienced, fear is not only normal, but expected.  But when you can her from someone who has been there done that, the circumstances could be different, but witnessing the end result can often boost our ease and confidence, reduce our fears.  I am going to take you on my personal journeys to Memorial Sloan Kettering Cancer Center, and other facilities, that follow my long term cancer survival.

If I struggle with care, I plan to address that.  During a recent hospital stay, I had a doctor attempt to rush to release me though clearly the results had spoken differently.  Patients have rights, and the first step to exercising those rights, is to realize that you have them.

As I pursue another attempt at the North Penn School Board Director position, I will come across education related issues which I will share with you.  This includes curriculum, environments, bullies, and school safety.

Two of the major issues in my life revolve around cancer and cardiac issues.  Times have changed since the days I went through both and there are wonderful new opportunities and higher cure rates.  I want you to see that.

As my daughters get older, it will be possible that we will be facing issues related to their being adopted and our family being interracial.  Of course, nothing is funnier than watching his “baby girls” finally growing up.

I plan also to throw in some short story fun pieces, reactions to current events, and exploring oddities.

Most importantly, I want to inspire.  I deal with quite a lot physically, but when anyone looks at me, people respond with “but you look so normal and… healthy”.  I do what I can not to let my cancer history, side effects or other struggles define who I am, or limit me.  As always, I need your feedback.  Please feel free to comment on this page (good or bad – I want to improve my writing).  And please, share this web site with anyone you feel it could inspire.

I want to help you laugh, inspire, and deal.  Here is to 2013.

When The Holiday Does Not Feel Like The Holiday


New Year’s Day.  Only Christmas and Halloween have as easy a date to remember.  For New Year’s Day, it is the easiest to remember, the first day of the year.

The night before, called New Year’s Eve is often spent in revelry either with friends, family, or with Ryan Seachrist on the television.  For children, it is most likely the only evening that they are allowed and encouraged to stay up well past their bedtime.  For some grown-ups like me, I look at 12:01am as the time to start preparing for slumber.  The next day is normally a work day.  So at least 5 years, this is the case.  When New Year’s Day falls on a Friday or Saturday, I will have the following day to recover from the overindulgence of food and drink.

Over the last ten years, about seven of our last New Year’s Eves have been spent with my in-laws, dining at a fancy restaurant who has reduced its menu to five or six selections (none of which are cheesesteaks or cheeseburgers) and raised its prices as high as $20 over what it normally would charge.  Now I made the comment about the food selections because I am a picky eater, and with the entrees offered, the restaurant clearly is not Burger King and will get upset with special orders.  I tried once, only once to order from the children’s menu for some “plain” fare and was nearly kicked to the curb for ordering chicken nuggets.  I personally did not see the big deal.  Both my daughters were getting chicken nuggets.  And then I was supplied with the reason for their lack of approval.  “We do not serve chicken nuggets to adults.” 

I guess that the restaurant figured I would make a stink about paying $69 for an order of chicken nuggets because after all, the bottom line was, I was an adult, taking up an adult space on the busiest night of their business.  As if some other adult would have been willing to sit with a family of strangers because that one seat was open due to the finicky eating habits of a grown up who had to be removed from the rest of the table of eating adults.  Quite honestly, I have a problem paying that much money for any entree, but knowing I was going to be stuck paying an “adult fee” for my meal, at least I would have eaten all of my chicken nuggets rather than just stared at a plate of something I could not pronounce (my rule of thumb – if I cannot say it, not gonna eat it).

The remainder of time on those evenings are spent back in one of our homes, where we continue to shove food down our throats, for me, usually it is a meal’s worth, all kinds of snack foods:  cheeses, ring bologna, cookies, etc.  We attempt to play some sort of game stalling time until the countdown to midnight.  And then it arrives.  The second round of clockwatching begins so that I can get some sleep.  It will be another day of glutiny and partying, followed the next day by the return to work.

Easter, Mother’s Day, Father’s Day and others are not very big party days, so recovery to return to work on Monday is not that difficult.  But New Year’s Eve this year was Monday, New Year’s Day is Tuesday, and return to work is Wednesday.  It just does not feel right to return to work on hump day, when we have not worked the week at all yet.  And it never fails, all the other big party holidays like Christmas and Halloween and July 4th, all have those roving holidates, making the return to work the next day if you have partied the night before, as bad as waking with a hangover.  But when you assign the name “New Year’s Day” and that automatically implies January 1st, I guess we do not really have the choice of the day of the week to celebrate it.

We often take the opportunity to look at the coming of the new year to look forward to what lays ahead.  New Year’s Day next year is on a Wednesday.  I do not see a lot of motivation to work on Monday to party Tuesday and Wednesday, and then go back to work for just two days.  I say, we start declaring holidays to cover whatever days it takes to get to the weekend.

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