Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “June, 2014”

My “Ford Pinto”


I am going real retro for this story. But then again, as a long term survivor, the comparison I am about to make, makes sense. I have a co-worker who routinely likes to tell me the phrase, “congratulations on your new Ford Pinto”. I do not think he is old enough to even know what a Ford Pinto really was, but I do know what the Pinto was. So when he mentions that expression to me, just as I am about to deal with an unpleasant situation, I know the situation is not going to be good. Neither was the Ford Pinto.

The Ford Pinto dominated the 1970’s and was marketed as a 2-door sedan. But the selling point, was the hatch back. Ford’s creation competed with other manufacturers who used the hatch back design. It had one flaw in it, a major one. There was a huge risk of the fuel tank rupturing with a rear end collision discovered half way into the decade. The tank would rupture and the car would go up in flames, leading to the Pinto being one of the worst cars ever made.

There are times when I feel like a Ford Pinto. Just like the car when it was designed, on paper, everything looked perfect. The car would compete with the AMC Pacer or the Chevrolet Vega. Production occurred, people bought, cars erupted in flames.

On paper, just as many other cancer survivors who underwent cancer treatments back in the 1950’s, 1960’s, 1970’s, 1980’s, 1990’s, the treatments were supposed to lead to a cure. Treatments were not going to be easy to tolerate due to side effects – the common ones, nausea and hair loss – but for the time the treatments were used, they offered the most hope.

I am sure my story is no different from those back in the other decades. I was treated at the end of the 1980’s. My side effects for treatment of Hodgkin’s Lymphoma were all that I was told. I should say, short term side effects. You see, in my file as I would discover just a few years ago, there was mention of late term side effects. I had only two to worry about from my treatments, a secondary cancer such as leukemia, or pericarditis – an inflammation of the lining around the heart. That is all (yes… those two things alone are bad enough).

But as Maxwell Smart of the television show “Get Smart” used to say, “missed it by that much,” viewer knew it was not even close. Here is what my doctors missed “by that much” in my case:

coronary artery scarring (led to my double bypass six years ago)
heart valve disease
carotid artery disease
restrictive lung disease
facet joint arthritis
osteopenia
radiation fibrosis syndrome
hypothyroidism
Barret’s Esophagus (pre-cancer of the esophagus)
drooping head syndrome
muscle loss and what is left, muscle atrophy
compromised immune system
post traumatic stress disorder

There are more, but these are the things that are on my annual radar to be followed up on closely as they have the biggest potential impact.

Now, had I been told back in 1988 that I would have been at risk for all those things listed above, I do not know that I would have made the decision to go ahead with the treatments. I have been lucky. I know many who have far worse diagnosis than I do. I am lucky to have one of the top hospitals in the country monitoring and managing my issues. There are too many in our country, and the world who do not even know they are dealing with issues like mine or worse. Instead, they go to a doctor, voice their ails, only to be told their symptoms do not make sense and instead of the doctors ordering the proper tests to determine the cause, survivors are left to feel as if they are hypochondriacs or just all about the drama.

The late side effects that I developed, and so many others developed are very real. As real as the owners of many Ford Pintos found out that their cars could explode when it was too late, the same goes for us who were exposed to radiation levels four times the lifetime maximum exposure, or injected with a drug used by dictators to kill thousands of their own people. I was exposed to both of those issues not to mention other effects from pre-diagnostic surgeries or the other drugs used in my chemotherapy cocktail.

Sure, the Ford Pinto was, and if some people still own any, a cute car to look at. And to look at me, you would not be able to tell “my fuel tank was capable of rupture”.

I wish that after all the years had gone by since my treatment days, that more than just “curing a lot of cancers” had taken place, and more than just getting to the point of curing all cancers, but finding safer ways to do it.

Ladies and gentlemen, I am a “Ford Pinto.”

Post #300


I am never going to produce a major blockbuster movie like “300”. Nor will I ever have an opportunity to hit 300 homeruns. In fact the closest I have ever come to achieving 300 of anything would have been a perfect game in bowling back in my late 20’s. I threw strikes in the first nine frames, and then tapped a ten-pin, spared it, then completed the game with another strike in the 11th frame.

With my blog, I am finally achieving a 300, my 300th post on “Paul’s Heart.” My posts are at over 8000 views and the comments of support and appreciation are numerous. This is a big deal for me, but pales in comparison into the week ahead that I am going to have.

Next weekend, Father’s Day weekend, I will be memorializing my father who passed away three weeks ago. After discussing it with my siblings, we felt it was an appropriate tribute to our father. Just as many who have gone through such a personal loss, I am sure that you can understand the struggle to deal with “the first Father’s Day without my father.”

At the same time, it is Father’s Day weekend, something that I have always looked forward to since before I adopted my daughters. Besides the emotional toll of my father’s memorial to deal with, this will be the first Father’s Day for me with just my daughters. Due to the recent custody agreement I made with their mother, and my father’s passing, I have not been able to see them in a long time, the longest time apart.

I speak to my daughters every day, and on a couple of occasions I have been able to see my daughters courtesy of Facetime. I will get to spend the entire weekend with them, and I have a lot of activities planned with them. But next weekend will not be just about me. Every day I have thought about the hurt and confusion that my daughters must have. Which is why I will pull out all the stops to show them next weekend that the divorce does not change who their mother is, or who their father is. It is important to me to make sure that my children do not blame themselves for the divorce, that the divorce was an issue between just their mother and I.

The girls get to do a lot of fun things with their mother, and next weekend, I cannot wait to spend time with them.

My story is not unique, as there are probably thousands of other dads who have a similar story heading into next weekend. My parents divorced when I was young. So I have the perspective from both child and parent.

Next weekend is not about quantity, but rather the quality of the time that I get with my daughters.

You Didn’t Just Say That


Back when I decided to adopt my daughters, part of the process involved being educated in how to deal with becoming an interracial family. My daughters were going to be Chinese, and with the exception of having my eyes, clearly they were going to look different than me.

That difference is almost certain to bring out comments from people who do not understand just how potentially hurtful their words can be. You can call it ignorance, perhaps even bigotry. I would just call the comments and questions unnecessary. After all, no one ever asks a family with biological children “so where is your child from?” or of the siblings, “are they siblings?”

But that is exactly what happens, and I cannot vouch for when the children are adopted by the same ethnic parents, but when the family is going to be mixed ethnicity, white/African American/Chinese/Latino, for some reason, people need to know.

So it is not unusual for me to hear at least a half a dozen times when I am in public with my daughters, I will hear, “Are they sisters?” to which I always reply “yes.” Because they are. That is all they need to know. My daughters know that they have different birth mothers and fathers, but have the same adoptive mother and father. Another question that I usually give a smartass response to is, “where are they from?” I can give only a smartass answer because when you see my daughters you can see that they are Asian. But I give the answer, “from Lansdale.” But then that gets followed up with, “no, I mean what country are they from?” which my reply the United States. No, I do not have to play this game, but I have grown tired of it after all these years. Their mother and I, while knowing that are daughters were adopted from China, simply look at our daughters as just that, our daughters. We recognize and celebrate their Chinese heritage regularly. But to us, our daughters are no different than if they were our birth children.

But the worst possible comment that I heard actually came from a co-worker, a comment that while I knew the person was capable of saying bigoted or self-righteous comments, all in the name of Christianity, I never saw this comment coming.

The conversation started in the breakroom during my lunch period. My co-worker said to me, “you know, I don’t really approve of what you are doing,” making reference to the adoption of my first daughter (I never gave him a chance to make another comment like you will see in a few moments). I looked at him, knowing his personality, that his opinion was going to be in the line of “being unable to have kids, maybe I was not meant to have kids as God had planned”, his God, not mine. I have heard this said be some before. And perhaps I could have accepted his comment without any reaction from me if that had been his comment. But for whatever reason, I allowed the conversation to continue like I was trying to educate the ignoramus.

“Why, what do you mean?” I asked like I needed his approval.

“Well, I just don’t think it’s right. We send all of work over to China. We sell nothing but Chinese made products here. And you are bringing the Chinese here making it worse.”

It is not often to make me speechless, but this asshole did it. I stood up, pushed my chair in and walked away. I never entertained any other personal conversation with him ever again. I never, ever thought I would hear that comment from him. I understand the rhetoric by uneducated people who feel the blame for all the ills on our economic relationship with China, but the children of China are not. My daughters are US citizens and when of age will pay taxes unlike many US corporations. But when I heard that comment come from him, I could recall that I never once heard him complain about that last fact, only that I was bringing the Chinese to the country, under the guise of creating a family for me, to take over the US economy.

There are many other stupid things that I have heard, and many families I know who have heard worse.

When you see me with my daughters, if you feel the need to offer a comment, and though I am biased, I do expect to hear how beautiful they are, but I do not want to be asked where they are from or if they are sisters. Trust me, I like to talk. And if I feel it is appropriate, I will bring up that fact.

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