Friday, September 30, 2011

That leg of the journey is over ...

I don't want to write this entry.

One of the reasons I started this blog so there would be some sort of record of my medical progress as I entered this tunnel of darkness and hope.  I hoped, probably a bit arrogantly, that some person going through a similar journey in the future would find some comfort and hope within the knowledge that they are not the only person that has gone through this.  I admit that I had high hopes that I would come through the end of this journey and say, "See, it was all worth it, and it worked, and it will for you too!"

Unfortunately, I don't get to say that, which is why I don't want to write this entry.

Life isn't all about reaching the finish line first; sometimes it's about the runner that tripped on the last hurdle and didn't make it to the finish line, as much as he tried.  Sometimes it's just about the story, and not the happy ending.

So, I'm gonna take a deep breath and record this anyway.

Last week I met with my liver doctor, and received the test results for which I had been waiting six weeks.

The short version is that the Hep C viral load rose, rather than fell.  The medications weren't working.  My doctor said that I could continue treatment for another year, but that honestly there was only a 1% to 2% chance of it succeeding.

Maybe it was the fatigue and depression talking, but I just couldn't spend another year being physically and emotionally miserable, all the while spending thousands more dollars that I didn't have for such a small chance of success.  He said that he was disappointed that it didn't work, and that he'd like to see me every six months to monitor my liver, and that he also believed that new medications were coming out in three to four years that could help.

I said, "thank you very much for all your help, doctor."  We shook hands.  I left.

It was over.

There were a couple of people that asked to be called immediately after the appointment.  First, I called Michael and told him the news, breaking into tears.  Bless him, he immediately broke his plans with another close friend, and told me he would meet me for dinner.

Then, thinking that I had gotten myself under control, I called my father.  I was wrong about the control part.  I burst into tears again.  I told him what was going on, and when he said that I must be very disappointed, I said, "that's one way to put it."  He said, "Devastated might be the other?"

Yeah, that's it.  Devastated.  I had put so much hope into, and had so much riding on being "cured" of at least one fucking life-threatening disease in my life.  For the first time, I seriously began to think I would become an old curmudgeon, married to an equally curmudgeon-like, but adorable man, watching nephews and nieces grow up to get married, have children and bring them to visit me so I could dispense my wisdom from the hallowed summit of my advanced age.

I began to think that maybe I'd be able forgive myself for becoming diseased.  I had dared to think that maybe I wasn't going to be punished anymore.

When all this coalesced into my mind, I was like "What the hell?"  Do I really believe I'm being punished?  If so, by whom?  For what?

Honestly, most of my being understands that difficult and cruel things happen to people, good, bad and in between.  It doesn't matter if you're funny, kind, caring, and saint-like, sometimes things happen that there are no cures for.  Sometimes mistakes are made that can't be unmade, no matter how much one regrets them.  No matter how much one wishes that they had been smarter, and had made better choices.  That's just the nature of life.

But sometimes, just sometimes, in the back of my soul, the locked container where all the fear and doubt and self-loathing breaks open, and I think, "Yes, I am being punished," and I believe with all of me that I deserve it.

Let me make one thing clear.  I don't believe in a god that takes pleasure in punishing souls, and I refuse to be a part of any religion that does.  I don't believe in Satan or supernatural beings that are made of pure evil to continually test and punish mortals.  I just don't, all the preaching and pointing to holy books by our so-called spiritual teachers and politicians, notwithstanding.

It occurred to me that the only person that is truly capable of punishing me is ... me.  Again, I don't know if it's the fatigue and the depression talking, but I can't seem to get past the idea that I'm just not worth being cured.

Today, I kept wondering what would happen if I ever lost my insurance, and couldn't pay for medical treatment, and I think I came to the conclusion that I'd just stop being treated medically, and let the diseases take their course.  Hopefully, quickly.  I refuse to be a burden on my family or my friends.

Won't Rand Paul, the libertarians and the republican parties be proud of me if I don't contribute to the deficit in any way, shape or form?

On the other hand, I'm not too fond of pain, so this seemingly very fiscally and socially prudent course of action will probably fly out the window.  I'm weak that way.

Lest this post be completely depressing, there are some things that I'm proud of.

I got through the initial agreed upon course of treatment, and didn't give up.  I took all of my medication each and every time, according to instruction.  I've paid all my medical bills and didn't borrow a dime from anybody to do it.  I didn't bitch too much.  I also think that I only annoyed a minimum amount of people with self-indulgent whining.  I'm sure there are people that wish I hadn't backed out of involvement with their projects, but I did the best I could.  I didn't go over my allowed amount of sick and vacation days at my day job this year; a major feat, in and of itself.  As a matter of fact, when I told my boss that the medication was done, and I would be doing a better job very soon, he told me that he hadn't really notice a decline in my work performance, and that he thought I handled it very well.  Obviously, I hid the side-effects better than I thought I had.

I think that regardless of the fact that my body missed that last hurdle, my little journey over the past 9 months or so, is something to be proud of.  There's nobody that can say I didn't do the very best I could, and if they do, I reserve the right to punch them in the nose.

If you find yourself on this blog wondering about your own journey with treatment for Hep C, I can't guarantee it will work, nobody can.  All you can do is put one foot in front of the other and do the best you can and hope.  You might reach that magical finish line, or you might not, but you ran the race, my friend.  You ran the race with courage and heart.  Seriously, there should be a medal for that.

For me, it's time to look to the future, and see what is in store.  Hopefully with love in my heart, a smile on my lips, and a joyful laugh in my voice.

Tuesday, September 20, 2011

Into and out of the woods? ...

There is a fairly common theme in literature, especially fairy tales and quest type fantasy stories, in which the hero of the story goes into the woods to retrieve something that's very important.  The story is always fraught with danger, and usually the fate of the very world depends on it.  In the process, the hero and his small band of stalwart comrades fight bloody battles to survive, and wonder if they are every going to be able to leave.  Oftentimes they don't shower or sleep in real beds for weeks.  It's a testing ground, a time to forge the sword of the human spirit.  Despite intense loss and unforeseen sacrifices, the hero usually manages to get back to his world wiser, stronger, but sadder.

Six months ago, I entered my own personal woods.  If everything had gone as planned, last Friday would have been my last injection of Interferon, and this Friday would be my last dosage of Ribavarin.  I would have been "cured" of Hepatitus C, and I would have been out of those specific woods forever.

Of course, every good story needs unforeseen obstacles.

After the last time I had posted about my medical status, I gave up hope that this treatment would work.  With a stroke of fatalistic genius, I figured that I would go through the original duration of the treatment, but that I wasn't going to be "cured" so I was able to quit worrying about the whole thing.  Remarkably, I found myself having reached that mystical and mythical place of calm acceptance and serenity about it.  I even practiced the sad, but brave smile in my mirror to make sure I got it right.  Okay, maybe not that last part.

The next time I saw the doctor, there had been a fairly dramatic lowering of Hep C viral load, and there was again hope.  Calm acceptance disappeared from my bag of tricks, and I again was flailing around with most evil of all emotions, hope.

I can't quite decided whether hope is the fire-breathing dragon in this little quest fantasy of mine or the narrow bridge over the raging river of fire.  Hope is the thing that's gotta be faced down and conquered or else it will cremate the hero's heart in the fires of Mt. Doom.  It's also the thing the hero has to navigate just perfectly, or he finds himself plummeting into the mouth of the lava monster below.  If he indulges in too much hope, his spirit inevitably gets crushed.  Too little hope, however, and he doesn't even attempt the journey.  Tricky, tricky.

Hope has definitely kept my tired ass up at night on many occasions.

I meet with my liver doctor on Wednesday, and find out the blood test results that will decide whether it's possible for me to be "cured."  If the viral load is still detectable, it means that the treatment is done, and I come out of the woods, having failed in my quest, yet still bleeding profusely from a magical wound that will never heal.  If the viral load is undetectable, it means that I'm not leaving the woods, just crossing the river along a similar-looking path to another set of scary and dark woods for another year.  I will again be battling the dragons of hope.

Interestingly enough to me, I was surprised to find out this last weekend, that I'm hoping more and more that I get another year in the woods.  Part of it is hope and part of it is fear that I'll come out of the woods and find out that everything I've been battling has nothing to do with the meds, and everything to do with me.

After all, we create our own dragons, don't we?

Sunday, September 4, 2011

Family pride ...

I always hesitate to say I'm proud of somebody because I always feel like it indicates that I had something to do with their successes, which is rarely, if ever, the case.

A little while ago, through the generosity of my mother, stepfather, my brother, Jason, and my sister-in-law, I was able to take a trip back east to visit them.  It was the first time I had seen my brother's family in a long time.  My nieces and nephew are just as adorable as can be, even the 21 year old niece who was there with her husband, although I should come up with a better word than adorable for her.

Ummm, when did I become old enough to have a 21 year old niece who is married?  I guess the lie that I've been telling myself that the grey in my beard is premature is over.  Yep, the jig is up.

One of the things that I do is watch people.  A good portion of my ability to observe comes from my training as an actor, but most of it comes from a fascination about people.

Seeing my brother with his son and daughter was a sacred experience for me.  He's caring, on the tough side, what I call his "gunny sergeant" persona, not afraid to hold them, tell them to behave, and to teach them, and I get the feeling that he'd do anything for them.

All of this has led me to my past observations of my other brother as well as my sister.

Patrick, my youngest brother, has some amazing kids, and is a kind, loving man, who takes takes no shit from anybody.  He's smart, with a great booming laugh, great with his hands, and is doing his best to make sure that his kids are raised right.  All you have to do is spend a little time with them, and you can see that he's being amazingly successful.  I'm so excited to hear about their lives as they approach the end of their high school years and into college, family-life and careeers.  Patrick's got a heart as big as the world, but has no problems setting boundaries, something I aspire to a lot.

Denise, the sister.  What a loving human being.  She drove an hour and a half both ways to take me to the hospital for a biopsy recently, but she did it with her normal humor and certainly didn't have to.  She's also tough.  I've always thought that you might get through the men in our family, although that's doubtful, but don't mess with the women, because they'll kick your ass, and make sure it's done correctly.  She has a great son that she idolizes and is turning out just great.  She's a great mom.

The only word I can come up with, besides the obvious "L" word, is that I'm proud of them.  Smart, caring, loving, funny, salt-of-the-earth kinda folks, who will have your back if you need it. 

As kids we fought, laughed, got annoyed and did all the things that siblings did.  I was the oldest, and it was just recently that I realized how much my brothers and sister stood up for me without me knowing.  They are braver than I am in many, many ways.  It took me a long time to find my inner-strength.  They came into it much quicker, and much more comfortably.

There are few people in the world that can compare with my brothers and my sister.  Some of the finest people that I know, or will ever know.

And, while I had nothing to do with it, I'm proud of them and how they are living their lives, even when those lives are difficult, and how they are providing for the next generation.