Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 6, 2013”

Morris – Not The Pickiest Eater

He was one of the most famous faces and names of the 1970′s.  The word finicky became a household word and its definition was displayed as an orange Tabby cat, named Morris.  This snarky feline was notorious for turning his nose up to just any brand cat food, the only success coming from 9-Lives Cat Food.

Allow me to introduce you to someone so sneaky when it comes to food, me.  I like my foods plain, and only red meats or poultry and starches get my seal of approval.  I have been this way all my life.  Seafood, I do not want to see this food or eat it.  Green leafy vegetables, last I checked, there is no bushy tail attached to my derrier.

At the risk of being a poster boy for all they hypocrites of the world, I knew that I had to do better when it came to encouraging my daughters to eat properly.  From the beginning, both girls were given “everything” on their plate.  Wendy and I never made it seem like it was some sort of monumental effort to get the girls to try foods as if there was something wrong with what we were serving them.  But a couple of years later, after beginning to master “no thank you”, Wendy and I took a different approach to sampling new flavors.  We called it a “no thank you bite”.  Basically, you had to try it, and if you still did not like it, then you could say “no thank you.”  Sometimes that happened, but mainly our efforts were successful.

Today, my daughters are split on their eating habits.  The older one continues to love eating her greens.  She loves her red meat, but enjoys anything green with it.  Given her choice, she would probably sit and eat an entire bag of frozen brocoli.  Our youngest though has become a challenge.  She has mastered “holding out”.  Now taking the longest to eat a meal, she now stretches lunch or dinner to nearly an hour and a half while barely touching her plate.  She counts on being offered a snack with Madison.  That is right, Emmalie is our junk food bug.  Wendy and I have a fairly good grasp on it, but with guests or while visiting others we are clearly outnumbered.

We succeeded in getting the girls to eat or at least try everything in spite of how finicky an eater that I am.  Occasionally I had to take one for the team just to show that the food was harmless.  Fortunately, neither daughter has mastered how to read poker faces.  Surely they would have figured me out.

When I had the heart surgery, one of the major changes I was supposed to make, though the reason for needing the surgery was not diet related, I needed to eat better.  Everyone from doctors to nurses to my daughters pushed me to eat healthier.  And I tried, I really tried.   Wendy made all kinds of vegetables drowned in garlic so that garlic was all that I tasted.  I even learned a new way to tolerate eating veggies, to anyone’s shagrin  who would be sitting at a table with me, ketchup.  I put ketchup on everything green.  Bottom line, it gets the green into me at least.  It does not look great to you, but for me, I am getting the nutrients needed.  It would totally defeat the purpose, but I could smother everything in melted cheese if your prefer.

Of course, I tire of ketchup, which means that I stop eating the vegetables for awhile until I start to regain the will to eat ketchup again.  There are nightly challenges from the girls to eat green, but they are antagonizing about it.  “Come on daddy, just one bite, but no ketchup.”

Realistic Expectations

Apologies in advance.  What you see in my daily posts are raw, unedited commentary.  While I do go back and read them, I do not edit them for content or tone.  My filter was obviously turned off today.

We have done the routine throughout our lives.  From school days to employment, a day is missed due to illness, and when we return the next day, we are expected to pick up right where we left off.  When we were children, on average, we were fairly resilient.  Most of us never skipped a beat.  There were some exceptions that we all probably knew that it was not so easy to recover.

It caught me completely off guard the first time a doctor told me that I would need to take off from work to recover from something.  I had the biopsy for my Hodgkin’s on a Friday, so I had the entire weekend to recover.  I had a desk job, so when I came back to work the following Monday, it was no big deal.  Others were not so easy.  There was the “staging laparotomy” which is major surgery to remove the spleen and do various biopsies to see how much my cancer had spread.  That took a month to recover even just 50%, but at least there was always forward progress.

My heart surgery was a different story.  I had been in decent physical shape, but when I came out of the surgery, I had never felt as weak at that moment that I can ever recall.  It had been less than twelve hours and I basically felt like a blob.  But every day, I seemed to get better and better.  A bout with pneumonia and sepsis back in March, while inconvenient did not create much struggle to recover.  But my most recent diagnosis of bi-lateral pneumonia (double pneumonia) has left me for the first time, using the word setback.  Any other time I have been laid out, and doctors ordered to me to go easy and not overdo it, I went and did it.  I knew that I could.  I do not ever allow myself to be held back.  I have to much to do, too many responsibilities to care for, too many people relying on me.

But this time, my body was in charge.  Upon discharge from the hospital, as I always did, I tried to make progress to get back to work as soon as I could.  I needed to get back into the social circle.  I needed to not feel sick.  Not this time.  Within five to ten minutes of activity, my body’s energy was wiped out.  Five minutes in the cold air left my lungs in agony.  It took about a week for me to realize that my body was controlling when I would be returning to my activities.  But it was also causing me to reflect on just how much activity I push myself to do.

It is not sustainable to work 50-60 hours a week, run kids to lessons, attend several meetings, assist family members with issues or crisis, take care of the home and so much more, especially when your health is not perfect, poor diet, bad sleeping issues.  My body has me slowed down right now, and while I am in that gear, I need to figure out how to remain in that gear.  But another major concern has now come to the front of the line.  During this recovery, I have managed to reduce my level of stress to near zero.  Do not misunderstand me, I have things to deal with that have fallen behind with this illness, but I have not been pushing the limits of having a stroke.  The main culprit, my job.  Well, maybe not the job iteself, yes, it is physical and there is risk with it, but the job itself does not create the stress.  I do not think I can even say management is the cause, a contributor perhaps (at least one or two of them), but several co-workers who feel the need to drag others down into their dismal existence.

I have been out for over three weeks recovering from double pneumonia.  By itself, this is fairly serious.  With my added health history, even more so.  But only one co-worker even acknowledged that I was out, not one manager.  And I am okay with this.  I believe in keeping my personal life separate from my business life.  The problem becomes that my co-workers do not commit completely to this belief.  They do not ask or show concern, but they will spew lies and other misinformation, accusations, because somehow, my illness has affected them personally.  This will result in putting me in a defensive position as I return to work this morning.  I was not disappointed.

Literally within minutes of arriving in my building, I was greeted not with “Welcome back” or “How are you feeling?” or even a cynical “Hey, who’s they new guy?”, I got instead, “I need to plan out 2013 differently  to use FMLA to get me extra vacation time.”  It is so fucking frustrating to promise myself, my family, and my doctors that I am going to do everything within my power to keep my stress to a minimum, and this one asshole has managed to light the fuse already.  Realisticly, I know that conversation has already been occurring while I was out, even during the week that I was laid up in the hospital.  This confrontation should not have come as a shock to me like I allowed it to do.

I informed the moron that “I was admitted to the ER on December 10 with bilateral pneumonia and a fever of 103.8″.  I thanked him for his concern for my health with his comment and how my health obviously was of concern to him as I could tell when he visited me.  Oh wait, he didn’t visit me.  Then I launched off.  “I was in the hospital until December 14th.  My doctor ordered me to remain out of work until the 21st and by then, I had regularly scheduled vacation time still left that the company forces us to use and not carry over to the new year.  I had to cancel our vacation plans because I was sick and could not tolerate the weather conditions while I was healing.  Explain to me how I used FMLA to get me some extra vacation time which I didn’t even get to enjoy?”

And then I went to my work area.  Of course my absence meant having to clean up everything as day after day, the person covering my assignment did nothing to prepare for the next day in anticipation of not being assigned the task the following day, in essence screwing the next person.  Well, that was me.  So I spent an extra hour and a half restoring my assignment to a degree that I could accept as “clean” and stocked up.  And then, I notice equipment of mine is missing.  I have a cart that had extra gear on it, but I mainly used the cart to assist me with lifting issues as I no longer carry heavy loads.  Someone obviously made a complaint about this, and the entire cart was removed leaving me to find an alternative.  I have asked my supervisor for it to be returned (I have looked everywhere for it, and it is either thrown out or moved out of the building) and have been told they will look into it.  I have had this assignment for over two years and this has never been an issue, but a scumbag of a co-worker takes advantage of my absence, makes a bogus complaint, and without me here to defend myself, management acts.    

So much for trying to change.  It is only lunch time and I am exhausted because I spent so much time this morning spending my emotions and energy.  By late afternoon, I am almost caught up, and happy with the way my area looks again, but that feeling is now overcast knowing that once again, I am letting the ignorance and arrogance of others impact my right to earn a living and support my family.  My focus will take my attention away from enjoying the job, to concentrating on when and where the next act of bullying is going to occur.  With my recovery, I should have expected no less.

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.

Post Navigation