Living a Neo life in bullet time….

I’m not bulletproof, not by a long shot. If I were, I never would have developed primary sclerosing cholangitis (PSC), the liver disease that destroyed my liver, necessitating my transplant back in 1997. However, in some ways I have been able to dodge certain bullets that surely would have done me in. i didn’t get bile duct cancer, a risk with PSC. I had a two rejection episodes, one four days after transplant, and another in 2002. Again, a risk with transplant life. I survived a major infection in my liver in 2007, that was first thought to be a return of my PSC, but wasn’t, thankfully. Now, after seeing my liver function numbers go haywire since September of 2013, with no apparent rhyme or reason, the specter of  PSC return was rearing its head again.

These numbers started fluctuating, oddly enough, two months after I was put on generic Lipitor by my primary doc. Now if you pay close attention to TV commercials, you’ll know that while Litpitor helps with cholesterol, it can do funny things to the liver, including elevating liver enzymes, which are an indication of damage to the liver. This is initially what happened to me. The transplant team actually gave my primary doc the OK to proceed with the Lipitor, so I wasn’t too worried…until this past September, when my numbers went screwy.

I immediately contacted my primary doc and transplant team, and told them I was taking myself off of the Lipitor, and we’ll see what happens. Some numbers got better, some didn’t. One of the most important of these is a measure of the amount of bilirubin, a yellow pigment that gets released when red blood cells die. It’s what makes people with liver disease become jaundiced. Mine was elevated, not terribly, but the fact that I haven’t seen my bilirubin elevated since my rejection in 2002 got my attention – and raised the hackles on the back of my neck. I somehow knew this wasn’t rejection. It didn’t feel like it.

So, it was a watch and see game. Several of the enzymes started coming down on their own. Some fluctuated. the bilirubin however, didn’t budge. I began to wonder if the Liptior damaged my liver somehow. I posited this question to my transplant coordinator, who didn’t disagree with the possibility, but also brought up the demon again. It was not out of the realm of possibility that my PSC was coming back, and this time the pattern might very well have fit.

The only real symptom I had was a weight loss, noticed by friends. I lost about 11 pounds. I wasn’t sure if this was related to the liver, or maybe a flare in my colitis. In short, I was in a mild state of denial. Still, the transplant team just watched, and then the thing that really got them concerned was that my white blood cell count started steadily climbing as well. This meant infection. The problem was, I had no fever, no pain, no nothing.

About two weeks ago, things started moving with speed. Two types of MRI’s were arranged, a standard one, and something called an MRCP (Magnetic Resonance Cholangiopancreatography). The MRCP is specifically designed to use contrast to “light up” the bile ducts. It’s not the gold standard in diagnosing PSC. For that I would need an ERCP (endoscopy with dye), but because of the way I was rearranged internally during the transplant, an ERCP is far more difficult to do. I had one pre-transplant. They’re not fun.

So, I had the MRI’s this past Saturday. I went back to Strong today to speak with the transplant hepatologist (liver specialist) about the results. What was found surprised even me. I apparently have developed “micro abscesses” in multiple areas of my liver. These are NOT tumors, but small infections, that might have started in a bile duct, and spread out ward. The doc wasn’t totally sure. He also wasn’t totally sure that my PSC has actually come back. All these problems with my numbers might very well be the result of the infections. He did however say that there were a couple of bile ducts that did not “look quite right,” but stopped short of assigning blame to PSC.

Treatment? Well, they took blood cultures to see what is growing, but for now, two oral antibiotics. Depending on what they find, I might need to spend a couple of days in the hospital for IV antibiotic treatment, but hopefully not. Two weeks after that, another MRI to see if the abscesses have gone away.

So, here I go again, moving in bullet time to avoid those things that I know would hurt me a lot more. What if I told you…

The measure of a man

By now the news of the death of actor and Rochester native Philip Seymour Hoffman is worldwide news. The press is of course feasting on the apparent cause of his death: A heroin overdose, with the morbid detail of the needle being found in his arm when he was discovered unconscious. Yes, Phil Hoffman was an addict, even by his own admission. He said as much back in 2006 during a pre-Oscar interview with 60 Minutes. That he struggled with drug addiction off and on throughout a large portion of his life is a part of who he was as a person.

It was however, only one part of who he was, so why does it seem that people dismiss the rest of his life as meaning nothing because of his addiction and the way he died? I don’t make this statement lightly. After reading the comments on the news sites from people who seem to have made their minds up that the only thing that mattered about him was that he was, according to them, a junkie – rich, spoiled, and unappreciative of the opportunities he’d been given.

Given. Not earned. Given.

As if he never worked a day in his life to earn the good fortune that was bestowed upon him through his commitment to his craft as an actor. Ignorance may be bliss, but it also adds fuel to stupidity as well. Look, let’s make no mistake here: There is no one else to blame for the way Hoffman died except for Hoffman. His being an addict however, was only one part of who he was as a person, just like the rest of us. To dismiss everything else that made him a human being – a father, partner, brother, son, actor and director – is to dismiss the same aspects in everyone.

I’m not going to go into all his accomplishments as an actor, director, et. al. If you really need to know these things, do an IMDB search. It’s all there anyway. However, I lived in Rochester for fourteen years, and had the pleasure of acting on stage with several people who knew Hoffman and his family in a very personal way, and the one thing that always was said about him was that he really hadn’t changed on the whole from who he was when he set off for NYU in the mid-80’s. His ego was always kept in check, not only by himself, but by those he grew up with. By all accounts, he remained grounded to what was important in life, and to the people that he cared about. He came back to his old high school, Fairport High in Fairport, NY, on numerous occasions to conduct master acting classes for the theatre students. In addition to his mother, Marilyn O’Connor, it was his foray on to the stage in high school – nurtured by now retired Fairport acting teacher Midge Marshall – that fueled his passion to pursue acting as a career.

Older brother Gordy, also a Fairport alum, became a screenwriter. He wrote the movie Love,  Liza, which starred Phil in the title role. I had the opportunity to work with Gordy on a project related to his Blue Cat Screenplay competition; A live reading of the winning screenplay and the runner-up screenplay at Blackfriars Theatre, back in the mid-2000’s.

I met Phil on two occasions, both related to films he was in that were being screened at the Little Theater on East Ave in Rochester. They were brief, “Hi, really enjoy your work” kind of things. I did have the chance to tell him about how I took an acting class with his dad back in 2000. He chuckled, and said “Yeah, I forgot he told me about that.”

All this however will mean nothing to those who did not have a connection to him in one way or another. They will continue to see him through the narrow lens of what constitutes their view of Hollywood, celebrity, and yes, political affiliations. I’ve read comments that have said, with a vitriol that seeps through the screen, that he’s “just another dead liberal junkie.”

How many of us would like our lives dissected in this manner? To take the single most negative aspect of a life, and let it overshadow everything else? I’m not talking about people who commit heinous acts upon others. I’m talking about the average person, who like all people, have their own demons to conquer. Personal failings are just that: Personal. They need to be addressed by the individual, but that person needs to acknowledge and work at keeping them in check and no one else but themselves. Doing that allows them to do the best for others as well.

I dealt with acute depression for several years. I sought help, and worked hard to try to overcome it, but I know it always lurks in the background, waiting for the opportune moment to strike again. Will you judge me as weak? As unable to deal with reality? As simply lazy, and that I should just pull myself up and get on with life? Depression, like addiction, is a chronic, ongoing struggle against that which would drag me down. Yes, I am in a good place right now, but I have come close to falling down the rabbit hole again.

Hoffman fell down the hole, and was unable to get out this time. It did not make him an evil, uncaring person, as some might see him. He was human, just like the rest of us, and while his death is a tragic example of how addiction overpowers some, it is also a reminder that no one is immune to their own failings. Chasing the dragon was on his shoulders. It should still not be used as a means to dismiss the rest of who he was to so many others.

“He was a man, take him for all in all. I shall not look upon his like again.” Hamlet, Act I, Scene ii

(I would be remiss if I didn’t post my favorite Phil Hoffman scene, From Charlie Wilson’s War: