Paul's Heart

Life As A Dad, And A Survivor

On The Road Again


It is 4:45am.  Time to get ready for another trip to Manhattan for a visit at Memorial Sloan Kettering Cancer Center (MSKCC).  I was never treated for my Hodgkin’s Disease at one of the country’s top cancer facilities.  But I am being cared for the long term issues that I deal with from my treatments.  All of the doctors that I see at MSKCC have experience in cancer survivors, but one doctor has spent decades studying Hodgkin’s Disease and the late side effects caused by treamtents.

These are important days for me when I have to travel to New York.  Unfortunately it means that I must take the day off from work for just a 45 minute or hour appointment.  I try to get my appointments made in one day so that I do not travel more than once a week or every two..  Today’s appointment is a fairly simple one, but one of the most crucial for me in my survival.  It will last about an hour, but provide weeks of relief for me.

Manhattan is only about a two hour drive, but because of issues that I appear to have with the NYPD, I rely on public transportation which extends my travel time about about three hours each way.  So 45 minutes after I woke up, I now wake up Wendy and the girls to take me to the train station to begin my journey.  Local train to Philadelphia, bus from there to Manhattan, and then subway to the hospital.  It seems this morning I will have even more time as the New Jersey Turnpike resembles a parking lot.

Once I arrive in New York, if I have time, I will sit in one of the park areas and gather my thoughts.  It is important that I have everything straight to tell the doctors everything that has happened over the last weeks since my last visit.  Right now, the weather is perfect, low to mid 60′s temperatures.  It will not be long until I am battling freezing cold winds, one of my nemesis for my lungs.  But for now, I will take the near perfect weather.

Today the bus arrives in time for me to get some lunch before my appointment.  I am a simple guy, so I do not sample some of the finer eateries in Manhattan, but rather enjoy going to Johnny Rockets for a cheeseburger.  On my way back towards the hospital, I pass a Barnes and Noble to purchase the traditional NY books for my daughters.  I will do anything to encourage them to read, so they are always thrilled that I bring them home books while I am up in New York.  The trip into the book store is a little more than chaotic as it seems they have a book signing from some author named John Taylor from some 80′s has-been band.  All I know is the two hour line of women went bizerk as he walked through the crowd.  Whatever, I got what I needed, now off to see the doctor.

So the appointment does not go exactly as planned.  I have grown used to that.  I have been going to MSKCC for close to four years now, and only, ONLY when the day comes, that I am completely up front with the doctors should I expect an appointment to go any differently.  There is a part of me that holds back on symptoms and complaints.  It is related to one of my survivor issues.  I have been asked by several people, how can you have a “survivor issue” when you have been cured?  Things should be great for you!  You have a second (or in my case my 4th) shot at life.

When you survivor something that so many others do not, it is absolutely normal to question “why me?”  I am far from ungrateful.  I know my family and friends are very happy that I have had the outcomes.  But unless you have personally and physically gone through it, and personally know others who have not survived (and yes, I do know many who have too),  it is simply not good enough to say “just because”.  I often wonder, has a patient lost their opportunity because of time taken for routine appointments for me, or because I report every groan and ache?  If I could have just put up with something a little more, maybe it could have resolved itself and the doctor’s time could have been spent more on someone who definitely needed the help more?

It has grown to be a habit for me to wait until the 11th hour to respond or reach out.  I had a massive lump in my neck for four months until I allowed it to be biopsied (1988) which turned out to be my Hodgkin’s Disease.  I had tightness in my chest for four months (2008) until I called my doctor and said I was annoyed with it, which resulted in an emergency double heart bypass.  In 2011, I had to deal with a 4mm kidney stone which did not just develop overnight.  And then this past March, in spite of symptoms of extreme pain and nausea, it took 24 hours to allow Wendy to dial 911 eventually being diagnosed with sepsis and pneumonia.  Of the thirteen different doctors that I see for my long term issues, there is one in particular that I have been up front with and complete at all times, until now.  Today I discussed with her what has been troubling me long term, and took a fairly dramatic turn about five weeks ago, yes, I finally reached out to her.  Fortunately I was not dealing with a life and death situation as before, but my error in judgement was the same.  My reasoning just as before was wrong, because I felt like I could handle this on my own just as I believed with my cancer, heart, kidney, lungs, and immune system.

I will arrive home tonight around eight o’clock at night.  It will be the end of a long day.

See you next week doc.  I get it.

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