Paul's Heart

Three Down, One To Go

I was originally going to call this one “A Virus Runs Through It(Us)”, but then I though this website would go crazy, FB would have fits, and no one would eventually see it.  Not what I intended.

So with one month down in the school year we are already dealing with our first virus.  It starts with a phone call from the school nurse, “Mr. Edelman, we have your daughter down here in the health suite because she threw up…”

Either daughter has great timing at all when they get sick, from either end.  On the way back from a family vacation, travelling on I-80, without warning, which clearly there should have been something, even a pending odor, one of my daughters explodes literally out of her diaper all over the car seat and car.  Of course, being a major interstate, we have to wait for at best a rest stop before we can pull over to take care of it.

Madison fortunately is not one to get sick often with the exception of frequent ear infections as a toddler.  So it never fails that she gets hit with a bug at the wrong time in the wrong place, not that there is a perfect time or place.  As a second grader with a growing understanding of “image”, she lets loose in the gymnasium in front of so many classmates.  But it was not the location that concerned her, but rather she had plans that evening to spend with an old daycare friend.  Begging that she was fine, I still informed her that it was best not to make someone else sick.  Somehow telling a seven year old “we will do it another time” equals “it will never happen”.

Our youngest does not get off the hook that easily either.  Again really only dealing with more frequent ear infections, Emmy’s first bout with nausea came in the evening at around twelve months of age.  It began around eight at night, she was vomiting some very strange substance which originally looked like finger tips of a latex glove.  We were not sure what it was, but the vomiting continued several times.  Eventually, we took her to the emergency room only to give up waiting for care around 2:30am.  This is from 11:00pm, no one came in to see her.  By then Emmalie had fallen was no longer vomiting and had actually fallen asleep.  We found out the next day, she had eaten some white grapes which clearly had not digested.

But when it comes to battling viruses, especially those carried home from school, as a rule, I generally do not make light of anyone getting sick in our house.  One of the things that I discovered being a long term cancer survivor, is that due to all of the unknown conditions of testing, diagnostic surgeries, and treatments, my immune system had been left severely compromised.  The most significant factor is the fact that I am asplenic.  I have no spleen.  Decades ago, it was quite common for spleens to be removed for a variety of reasons.  In my case, to stage my cancer.  I was told I could live without my spleen, with just a simple precaution, a pneumovax shot.  This vaccine would be good for the rest of my life.

Of course, today’s medicine knows completely different.  The spleen is crucial in fighting infections and sustaining immunity.  In fact, the spleen also plays a major role in recovering from heart attacks (really technical – too long for this post).  Of course, I had not been planning on heart issues in my future either.  So following my heart surgery in 2008, and subsequent research on my health history by doctors who study and treat long term survivors like me, a new protocol is followed in caring for my challenged immune system.  For the last two years, I have averaged three pneumovax shots, two vaccines for menningicoccal, and at least two different flu vaccines each year.  This past March I came to find out, that even these efforts are not enough to protect and keep my life.  I developed sepsis and pneumonia in spite of all the prevention, both of which carry a high mortality rate for someone with a normal and healthy status.

So here I am, another school year, and another round of “avoid the bug”.  First Emmalie was sent home from school last week.  And a few days later, Madison was kept home.  By the weekend, Wendy went down.  So that makes three out of the four of us.  It is inevitable that I will get a crack at it.  But as one of my doctors is fond of telling me, in all the years I came down with the flu or other virus, I was lucky.  To get his point across, he asked me if I played Blackjack or slots and asked me the longest streak I ever had and what it felt like to finally get that losing play.  Point taken.  So what do I do?  I cannot live in a plastic bubble.  I can only rely on those who have to live with the same precautions as fellow long term survivors.

I have to be aware of those around me who are sick.  I have to keep in mind that even the slightest infections that a person may carry, could be devastating to me.  It is one thing for a student to miss several days of school, but another for an employee to miss time from work.  As I did in earlier days, if I was breathing, I was at work, no matter what my ill was at the time.  Chicken pox, whooping cough, strep, even a tooth with an abcess could all have fatal implications.  So even with my children vaccinated for everything under the sun, I have to assume that there are parents who have not done so with their children.  I have to take precautions such as disinfecting surfaces and frequently washing hands.  I need to make sure that I get plenty of rest, and not wear myself down physically.  And that may still not be enough… oh no…

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.