Paul's Heart

Life As A Dad, And A Survivor

02 Mar 2013
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12,088,800


The opening song in one of the greatest musicals, Rent, is called “Seasons Of Love.”  I am paraphrasing, but the song asks “how do you measure a year?  In daylights, midnights, sunsets, coffees, inches…”  It is a beautiful song.

I have titled this post “12,088,800” with special accounting in mind.  March 3rd is the 23rd anniversary of completing my chemotherapy for Hodgkin’s Disease.  23 Years – 12,088,800 minutes.  Compared to the 10,400 minutes that I was given the chemotherapy, or the 30,600 minutes from the beginning of my Hodgkin’s Journey to the completion, 12.1 million minutes is a long time.

12 million not big enough number?  14 million.  There are over 14 million survivors of cancer.

I am often accused of under-appreciating what I have gone through from my first counselor to the long term caregivers I see today.  I was treated with four times the lifetime maximum exposure to ionized radiation.  I was injected with a chemical that Sadaam Hussein used to gas his own people with.  I was battling a disease that has killed over 600,000 Americans a year, over 1500 per month.  Chances are, this paragraph has your attention.  It should have mine, and it does to a degree, but not what it should.

March 3rd, 1990, I completed 30 treatments of radiation to the upper half of my body, and 8 cycles (fancy term in my case, for months) of a chemotherapy regimen referred to as MOPP-ABV.  I had five surgical scars to show the lengths travelled for my diagnosis and staging.  Statistics of survival were only referred to with a five year mark.  Up until March 3rd, 1995, I had never heard of anyone surviving cancer, let alone more than a year.

Fast forward twenty-three years, as I enjoy destroying odds and statistics, I once again have the world by the tails.  I officially have my longest monogamous relationship with the mother of the two most beautiful girls.  I have a nice house and a great job that I not only enjoy, but take great pride that it is a career that allows me to “pay back” the industry that has saved my life on numerous occasions.  My daughters are now old enough and curious about my “cancer” history.  I am mindful of the time when I was a child, and the only thing I knew about cancer was “people died.”  They are reminded with each conversation that people can survive cancer.  As if this were not enough, brief as it is, I am continuing a local political journey for our local school board that began three years ago.  There is so much for me to be proud of, appreciate, and celebrate.

But yet, on this date, March 3rd, I afford myself only the opportunity to recognize the importance of this anniversary.  I cannot celebrate it, which most people cannot understand.  Wife, kids, career, surviving cancer for decades, I have every reason in the world to celebrate.  But I do not, I cannot.  My survivorship comes with an extremely burdensome feeling, guilt.  Survivor’s guilt.  I live, while others have not.  I am in remission for decades, yet many deal with their third, fourth, fifth recurrence.  Hundreds of patients and survivors have come into my life.  Regardless the distance, I held each of their hands emotionally at the least, to offer comfort, confidence, solace.  But I have also shed so many tears, some of joy, too many of pain.

This is a great day, make no mistake.  I recognize the importance, the value of my survival.  In twenty three years, just two decades, I have personally witnessed the great things that have come in the progress of safer and more accurate diagnostics, safer and more effective treatments.  Because of research from institutions such as Memorial Sloan Kettering Cancer Hospital, the University Of Pennsylvania, and so many other institutions who have made cancer research a top priority, and without the support of organizations such as the Relay For Life, Livestrong, StandUp2Cancer, and so many more, that progress would not be possible.

Here’s to another year.  Thank you.  From the bottom of my heart, for those that took the journey of cancer before me, with me, and after me, I truly mean that.

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.  And if you are not on that road just yet, you’ll catch up to me.”

Posted in Adoption, Animals, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart
01 Mar 2013

It’s My Daughters’ Fault


Years ago, blame went to the Japanese.  Then it shifted to Mexico.  And as our economy continues to struggle, the whipping post as of late has been the Chinese.  The war cry comes from all directions and it is one of the most generalized statements that someone can make.  “It’s The Chinese’s Fault.”  I am never sure if this is meant to point blame at the entire physical country of China, certain areas, the people, or the government.

I am by no means an economist so I cannot present a strong enough debate on import versus export, and all the other economic factors that tie between countries.  But I can say this, without a shadow of a doubt, that the Chinese people themselves are not to blame.

I heard my first anti-China remark years ago, when Wendy and I decided to adopt our daughters.  A co-worker of mine, who considered himself to be a fairly religious person utter the following comments:

“You know, I don’t support what you are going to do.”

Well at first, I figured “so what – who the hell are you to criticize or judge me?”  Or was he one of the few individuals who actually believe if a couple (intentionally saying couple because he probably did not approve of single parenting either) cannot have a child biologically, that was God’s way of saying that they should not be parents.  Instead, he hit me with a comment that I never ever thought I would have heard from anyone.

“It’s bad enough that we send our jobs overseas, you’re actually bringing someone over to take a job away from someone.”

I would love to just end this post on that ignorant comment.  But really, it is the punctuation mark of all the comments that I have ever heard, put together in the form of a compound sentence.  If they were all written on a piece of paper, I would have crumbled it into a ball and throw it in the trash, where I now felt that co-worker belonged.

The thing is, this ignorance is no different than blaming the Chinese for our economy or the Kardashians.  I cannot confirm it with the Kardashians, but the comments are  defintely hurtful for my daughters.  But day after day, it is the same rhetoric, “it’s the Chinese” or “Chinese merchandise is crap”, and the list goes on.

I was born in Allentown, Pennsylvania.  I have a mixed ethnic heritage, but I am fairly certain, that according to family lineage, I am American by birth only.  I have actually gone back and traced family histories to know that at least one person on each side of my family came from Germany at some point in the 1800’s.

My daughters were sworn in as American citizens on United States soil as part of their adoption.  Yes, they will identify themselves as Chinese-American, and learn both cultures, but make no mistake, they are American.

But having visited China personally, I want to share some of my observations and experiences.  So to be clear, while in the provincial city, I did not hear a lot of English being spoken and even when we were at Shamian Island, which is very touristy, the people of China were nothing less but courteous, polite, and nice.  There was a bit of curiosity with us being Caucasian and “round eye” (well at least the others, I have what is described as “almond eyes” which often results in me being confused with being Chinese, which I am not).

At least from outside appearances, everyone went about their business.  It was hard to believe that we were walking around in a communist country.  Other than the banks being a LOT more secure having heavily armed guards, the people of China seemed to go through the motions of every day life.  This is not to say that we did not see people that were not as prosperous, but they seemed to be living the only life they know.  In the main part of the capital city, it was quite busy.  But on our second trip, we were actually taken to a village outside of the city.

The village looked like a “third world” site.  Any flooring was concrete, but more often than not, it was dirt.  There were no visible wiring so the village clearly had no power, and there did not seem to be any plumbing as evidenced by an elderly woman carrying two buckets of waste balanced on a pole atop of her shoulders heading out to a field to dispose of.  Rubble was scattered all over.  But this village was considered a “farming” village.  And the fields were huge.  Most likely grown children were working in major cities for income as we saw mainly either older adults or small children.  To say they lived modestly is an understatement.

While back in the city, we learned very quickly the value of the American dollar.  The exchange rate, which is often ridiculed by the United States and many of its citizens was around 8 of their dollars to every one of ours.  A bottle of Coke was bought for less than 50 cents while at home here in the US, it cost me $1.75.  Why such a disparity for the same bottle, the same serving, the same taste, the same formula.  Yet clearly China was able to make a profit on this product, as everything else.  But the US made an additional $1.25 on the sale of that bottle of Coke and it is the fault of the Chinese that our economy is in trouble?

I came home with a couple of baseball caps from China.  I paid three dollars (24 yuan) for each hat.  At home in the US, those same hats would be sold in Walmart for at least twenty bucks if not more.  Again, if the Chinese are able to make a profit from three dollars, and the US companies can actually convince its citizens to spend up to $17 more, how is this the fault of the Chinese?

For just sixty American dollars, we had a special oil painting hand painted while we were in China, that would have cost us well over $200 at home. 

painting

The only thing that the Chinese are at fault of, is not going for full-on profit.  I am not in total denial.  I have seen documentaries on television that show products made in China, and made in “sweat shops” or underage workers.  Sadly, I think they exist everywhere in the world, and that does not make it right.

But to blame the Chinese “people” for our economy, it is simply not fair.  If it is a political thing, then it needs to be clarified.  My daughters are United States citizens of Chinese descent.  They are proud of their heritage as am I.  But try to explain to a ten year old, when they overhear an adult conversation and hear the word China and the words “fault” or “blame” and then hear the accompanying anger, that the comments are not made for them.  As they ask for an explanation, and they say it almost with embarrassment or shame, “but I’m Chinese.”  No one is making any other distinction.  It is only the fault of the Chinese.

Posted in Adoption, Bullying, Family and Friends | Leave a comment
28 Feb 2013

All Eyes On “You”


As a boy, I was raised by my grandmother for the most part.  She was a great example up to her dying day, one that I still follow to this day.  Though I truly miss her moral compass, I live under the credo, “do for others first, then me.”  That usually translates to never getting around to me, which I am perfectly okay with, in fact, that is what makes me happy, satisfied, fullfilled.

My neighborhood friends all loved my grandmother and called her grandma because she was such a safe place to fall, especially when they did fall.  Great at medical care, satisfying hunger with a quick snack, or even just cuddling up, knowing that I was in the safest spot, protected from anything bad, because that is what she did.

Even with a pending diagnosis of breast cancer, unbeknownst to me, she did all that she could to help me secure an apartment, including arranging for the deposit.  It was a week after I moved in that I heard the news.  I would never have left her had I known.  For all the years that she was there for me, it was now my place to be there for her, and she knowingly sent me away.

She has been gone from this earth for a very long time now.   My moral compass now in jeopardy, my values continue to stay in tact.  Just as I looked up to my grandmother I know that there are people who look up to me, seemingly in all places of my life.

Adoption – people want to be moms and dads.  When it comes to adoption, it helps when people reach out and share their experience.  Which is what led us to make the decision on China to adopt our daughters.  We attended an information meeting, where Lily Grace was sitting patiently and lovely, and we knew right away that was what we would do.  When we returned from China, just a few months later, we made the decision not only to adopt a second child, but to also speak at an information meeting as well, to hopefully inspire other parents as well.  The decision and process of any adoption, let alone international can be daunting.  It felt great to be able to tell and show that it could be done quite easily with assistance.

Animals – all I wanted was a dog.  What I got instead was a trip to Manhattan just after 9/11 with my Golden Retriever.  From a simple cardiac seizure to an all-out blitz resulting in a history of the dark world of Amish Puppy Mills, I stirred the attention of the PA Department Of Agriculture and dog warden, the USDA, and even a couple of newspapers.  But the ultimate was an offer to appear, with Pollo, on The People’s Court to settle my case where I had asked for valid paperwork for the dog, as well as information on his parents.  There was also the matter of his medical bills.  What I got was a sad lesson on what we as consumers do, condemming other dogs, just so that we may have that cute little puppy.

Bullying – I hate bullying in all forms, in all ages.  I do not feel that enough is done.  I do not feel that at some point, the victim must stand up for themselves.  It is a violation of a person’s civil rights to be emotionally or physically abused.  It is about the lack of respect for the person wanting to claim power over another.  With movies like Bully and programs like Olweus, hopefully we are getting closer to stopping this vicious issue.

Cancer – what can be said, on Sunday, I will hit 23 years cancer free!  While I know the impact that I have on my children, and they are getting to the age where they can understand what I went through, in the here and now, I hope that #23 has an impact for so many people.  I am just two years away from 25 years cancer free from Hodgkin’s Disease.  This is a big deal as statistics generally only refer to “five year” marks.  Along with writing, this year I have made the decision to tour and speak about cancer survival.  I am warming up for that monstrous anniversary.  The great thing?  I still am in awe of those who have survived their cancers even longer.  I actually know someone sixty years post-cancer.

Education and Politics – So my latest endeavor over recent years was to toss my hat into local politics.  Those around me often remark, “do you really need that in your life given everything you have been through?”  The answer is yes.  Running for the office of school board director is important to me, because protecting public education has a direct impact on my children, who have another ten years to go.  And I believe that everyone’s children will benefit from the effort that I will put into that office.  It is so inspiring and meaningful to stand up in front of so many people, many of them strangers, give a heart felt speech about how you will represent them and why, and when you are finished, you receive a standing ovation because they not only believe you and have faith in you, they trust you and want you to know that they are standing behind you.  It is one thing to be recognized as a passerby, but it is such an honor to be encouraged and supported.

Family & Friends – This is one area where I tend to lay low.  My family is not very open when it comes to health and emotions.  And I have a tendency not to lean on my wife’s family either.  It seems to be a much scarier experience to be that close to someone who has battled a serious illness such as cancer or an attack like a cardiac episode, than if it is just a story you may have seen on social media.  But it is through social media that I consider so many, my friends.

Side Effects/Survivorship – I have been an active participant on an internet support group called “American Cancer Online Resources”, ACOR.ORG for close to sixteen years.  For years I have watched so many deal with the “rewards”, rather consequences of their decision to fight and defeat their cancer.  A tremendous amount of progress has been made in just the short time that I was treated from treatments, diagnotics, and follow-up protocol to make sure that patients get the most out of their cure.  I want to make it perfectly clear, I have no regrets about the treatments that I went through.  I just want to serve as inspiration and hope to the millions who will either be diagnosed, or who are currently battling cancer.  The technology is out there to help us with our late term issues.  Unfortunately, just as with our cancer battle, we have to fight to locate this assistance, and then pursue it, but it is there.  If you have had cancer and been treated, and you just cannot come up with an answer to what is making you feel awful or causing pain, it just might be time to do some research.  As one of my doctors puts it, “we cannot reverse them or stop them (the side effects), but we can slow them down so that you get to enjoy your grandchildren”.  Which is hopefully at least another twenty years before I hear that word.

Heart Issues – Just one of the many side effects that I have had to deal with, no one looks at me and knows that I had heart surgery unless I have told them.  Which again, is due to progress and care.  The care that I recieved to diagnose, treat, and rehabilitate.  Now, it is about maintainance and not looking back.  I know everyone is watching.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment

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