Paul's Heart

Life As A Dad, And A Survivor

06 Jan 2013

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.

Posted in Cancer | Leave a comment
06 Jan 2013

Somewhere Between (The Movie)


The movie “Somewhere Between” is due for DVD release in the beginning of February, 2013.

Last Friday night, Wendy and I got to be a part of something special.  Actually, it started out as Wendy and Madison.  We went to see a movie last Friday night, down in Philaelphia to see a movie that was in limited release at the Landmark Ritz on the Bourse.  It was called “Somewhere Between”.

Somewhere Between is a documentary about four very young women, all adopted from China at infant or toddler ages, and had all become young adult females.  The film deals with the emotional issues facing the four young women while at the same time, provoking conversation with hundreds of thousands of other adoptees and their families.

We were initially introduced to this project many years ago.  Ann, one of the features in the movie was a middle school teenager who lived up the street from us.  She also happened to have been adopted from the same province in China as both of my daughters were.  Ann was involved in an adoption support group called “Global Girls” which literally reached out to other Chinese adoptees across the globe.  Ann had organized an informational gathering at our local library, and knew that there were children from China living down the street from her.  Always enthusiastic about having our daughters involved with events and the Chinese culture, we gave our RSVP.  Ann had given us some sort of “warning” that someone might be filming for a documentary, just so that we were aware.  It never raised any kind of concern out of us, in fact, we never saw any camera.  But it was there.

Several years later, we received a phone call from Ann’s mother, Kathy.  Kathy wanted to inform us about a movie that was being produced and included footage from the meeting that we had attended years ago.  I was not really sure what she was talking about at that time, but she was happy to send me the internet link to see the trailer for this movie, now titled “Somewhere Between”.  As expected, when viewing, we saw footage of the girls that the film was about, scenery of the Chinese countryside, and some filming of their current home towns.  And then the trailer go to Ann’s hometown.  She was in color guard in school marching in a parade.  Then she is walking through the library past a table with a little girl sitting with her mother.  It is Madison at three years old with Wendy.  And then I hear, “Where are you from” from Madison.  Ann responds, “I’m from China.”  Madison answers, “Me too.  I’m from China.”

With no major stakes in the film itself, it still felt like forever that this movie would come out.  Finally, the film was released to select independent theaters and we got to see it last night.  There were a lot of people interested in seeing this movie, but for us, we had a personal interest in it.  I am sure Wendy may have been a little nervous about being seen on the big screen, but there was a ton of pride in me.  And then the theater went dark.  Some previews were shown, and then the movie began.

Just like watching the trailer, we had anticipation.  After all of the young women were introduced along with their stories, there were Madison and Wendy.  The theater was quiet as everyone was drawn to the images on the screen.  And then Madison gave her line.  A huge rush of happiness came over us, as we heard most of the theater respond with a chorus of “awwwww”.  The movie was much more than just a proud moment for Wendy and I.  The movie was an opportunity to learn that we have more to learn about being parents to Madison and Emmalie as they grow older.  Unlike biological children, adopted children (especially intenationally adopted children) are probably much more likely to develop identity issues, realize abandonment issues, as well as possibly deal with the ignorance that some people have in expressing comments about bi-ethnic families.

I will admit that plenty of tears were shed watching this movie, Wendy cried so much more.  We have talked about a heritage tour for the girls, and after seeing this movie, we realize just how important that decision will be to our daughters.  I will not spoil the movie as there are still premiers occurring across the country, and a DVD will hopefully be made available in February.  Younger children should not probably see this film as there are quite a bit of serious issues to deal with and understand.  Even for teenagers, it may be difficult for them to view.  But it is definitely for parents, of any adopted child not just from China, to see this film.

If you would like to see the trailer, go to www.somewherebetweenmovie.com and click on the trailer.  At about the :47 mark is where Madison makes her cameo.

Ann, we really do not know you that well, but by chance you came into our lives, and taught us perhaps one of the most important lessons with Madison and Emmalie.  We are hopeful that we will be better prepared for them when that time comes.  And Linda, thank you for putting this project together.

Posted in Adoption | Leave a comment
06 Jan 2013

A Different Kind Of Day


It is rare that I spend a day, an entire day, just relaxing.  In my house, my daughters often do not ask me what is planned for the weekend, but rather “are you working tomorrow?”  Last week saw me spend all weekend and an extra day with my daughters.  Today was spent with my father-in-law. 

I am a diehard Seattle Seahawk fan and have been for most of my football fanhistory.  But for today, I was rooting for the Philadelphia Eagles.  I was invited to attend the game today, and took my father-in-law, a huge Eagle fan.  It was a special day for a number of reasons, but today the NFL was recognizing the support for breast cancer, or as one vendor convinced me into purchasing my first pink hat because “I need to support Ta-ta’s”.  Of course, in a large crowd, I avoided what would have been a more typical response from me, “I love supporting Ta-ta’s.  In fact,  I would like to offer my services free of charge breast exams, called Manograms”.  But being outnumbered by such an inspired group, and also being a special guest, decided to make my donation to support Breast Cancer Research and move on.

The game was pretty much uneventful, just typical.  The offense struggles, fans boo, Eagles take the lead, everyone is happy.  The Eagles just have to seal the deal.  But you can hear and see it in the fans in attendance, it is not going to happen.  Disappointment will prevail.  You can feel it.  And so, with five minutes left in the game, the Eagles had, HAD a ten minute lead that they surrendered, and then regainded with currently three minutes left and when the clock ticked down to 0:00, a momentum shift occurred as the game went into overtime.  Shortly some time after, the fans are put out of their misery with a Lion field goal.  The majority of the people will be leaving unhappy, calling for Coach Reid’s head and so on.   Instead, for me, I begin to reflect the last six or seven hours gathered with family and friends. 

I do not get to see my friend Ginny often.  We both have children who were adopted from the same orphanage in China and stay in touch with each other as the majority of the other travel families we adopted with.  It was extremely loud in the box which should be expected for a football game.  We did get to chat a little bit, but as host, she had other guests to entertain, while trying to watch the game.

My father-in-law seemed to enjoy himself too.  I am sure however, that we were both thinking the same thing, still grieving the loss of our in-law Mike, definitely gone too soon.  It was usually Mike and I that did things with each other, so this was a bit of a different situation.  I feel bad for my father-in-law as he really misses him.  Unfortunately, I do not have a lot in common with him, but on the other hand, have a lot I can learn from him.  My father-in-law has tons of knowledge of carpentry and building, though we have attempted a couple of projects together in the past, and let’s just say there is a reason no when ever sees me swinging a hammer or with a paint brush in my hands.  But he knows that he can count on me, and that I will help him with whatever he asks.  After all, I took Wendy off his hands for him.

But Mike had so many great qualities in him.  My father-in-law and I were reminded this afternoon of one particular skill that Mike possessed as we left the Eagles game.  Mike was an awesome navigator.  Riding with Mike driving was often described as taking a ride on “Mr. Toad’s Wild Ride”.  But Mike knew how to get around large metropolitan areas, especially once of the main drags.  As we pulled out of the parking lot, the anxiety of the traffic that we expected to sit in on I95 with 60,000 fans leaving the game at one time, my father-in-law quickly mentioned how great it wouldhave been that Mike would have been very handy with getting out of this potential mess.  And I agreed.  And it was that quickly that we hit the interstate, and ended up home forty minutes later, instead of two hours.  Thanks Mike.

Posted in Family and Friends | Leave a comment

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