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.

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?

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.

Epiphany ...

I had an epiphany some years ago when I was young and trying to figure out what my place in the world was.

At some point, I realized that the only thing that was truly being asked of me on a soul level during this life time was to learn how to love.  It was a HUGE earth-shaking revelation to me, which was followed by the realization that I didn't really know how to love, and that I'd have to learn.  Oh, I was certainly capable of love.  I think that all beings are capable.  It's the gift of the divinity that surrounds us and permeates us, or perhaps it's just the gift with purchase of our humanity.

But to really love?  I didn't know if I had it in me.  I was selfish and self-protective and my armor was 10 feet thick because I didn't think I deserved to have anybody love me, so why should I love them?  They'd just ricidule me and then leave  I sometimes still don't think I deserve it, but I've gotten much better.  It's especially difficult when one is being bombarded by hateful messages from politicians, church-leaders, neighbors and media outlets.

To really be able to love doesn't just mean to feel wonderful in the presence of family or friends or lovers.  The character of Lao Ma on the television series, Xena, says to Xena that it's easy to love somebody who loves you back, it's kind of a good business arrangement, it's more difficult to love somebody who doesn't love you.  (Forgive me, Xena fans, I know I'm paraphrasing.)

I'm learning, very slowly at times, what it means to be able to extend that benevolence, understanding, compassion, and forgiveness against those people who hate you, who actively preach against you and demonstrate and call you horrible, horrible names and accuse you of unspeakable acts, and what it means to get past one's own fears about rejected and loneliness and just love without expecting anything in return.

I must admit that it's difficult for me.  I sometimes feel like I'm seen as the enemy by a great deal of society, feel rejected, less than, hopeless and scared.  When somebody like Fred Phelps, Ruben Diaz in the New York state senate, Michelle Bachman, and the Pope spout off their anti-gay rhetoric or somebody calls me a "faggot," I get angry.  Worse, I get scared.  Anger and fear will get in the way of love, and it takes an extraordinary act of calmness, trust and forgiveness for me to get past it and get to love.

Some years ago, there was a television show called Touched by an Angel.  Many of you will remember it, as it was very popular.

There was one episode with Wynona Judd that touched me deeply, and she peformed a song in the climactic scene that speaks of how I feel about love.  In a world where hatred and fear is spoken of constantly, and talks about love and compassion are few and far between, it behooves me to Testify to Love.  This song reminds me that I am not alone in this journey to learn how to love.

Here is the clip from the show, and the lyrics follow:

All the colors of the rainbow.
All the voices of the wind.
Every dream that reaches out.
That reaches out to find where love begins.
Every word of every story.
Every star and every sky.
Every corner of creation.
Lives to testify.


For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.


From the mountains to the valley.
From the rivers to the sea.
Every hand that reaches out.
Every hand that reaches out to offer peace.
Every simple act of mercy.
Every step to Kingdom Come.
All the hope in every heart will speak what love has done.


For as long as I shall live, I will testify to love.
I’ll be a witness in the silences when words are not enough.
With every breath I take, I will give thanks to God above.
For as long as I shall live, I will testify to love.

That clip still makes me cry.

So, do me a favor today, take the time to hold the hand of your closest friend, your lover, your wife, your husband, your son, your daughter, your pet, your neighbor, tell them that you love them, and then both of you together turn to love somebody else.

I'm pretty sure that the world will be a better place for it, and even if it isn't, you'll feel better.

The little, miraculous things ...

I really can't call myself a gardener.

After all, I only have about a dozen potted plants on my patios.  Four of them are rose bushes, one is a fern, one is a succulent that hangs down from my balcony, one is a ficus tree, one is a peach tree that doesn't produce fruit, some impatiens, and a couple of miniature palm-like thingys that my neighbor gave me.  Not quite enough street cred to embrace the title of "gardener." I water and feed the plants with Miracle Grow every once in a while, and hope I have the right plants for the amount of sunlight I get.  I know very little about it all.

Miraculously, my plants grow and flowers bloom 85% of the time.

Everytime I see a new shoot, or a new flower, I am moved.  Seriously moved on a cosmic, metaphysical and emotional level.  There is something so miraculous and hopeful about new growth on a lovely plant.  It gives me a sense of hope, a sense of continuity of time, and a peace in my soul that is difficult to explain.

Lately, I've noticed that I spontaneously talk to and encourage my plants when I see them.  "You're doing great!  Look at that.  How pretty you are!  Wow!"

Yes, I'm that guy.  I've learned to just deal with it.

Of course, I'm also the guy that sometimes hangs stockings for my animals during the holiday season, and when my brother heard about it, he loudly rolled his eyes.  Really.  I could hear it over the telephone.

This is what I do know.  Sometimes during that beginning or end of the day when I'm encouraging the plants or talking to my cats or giving them an old fashioned cuddle, my world is at peace and the crap is put where it belongs, in a box to deal with the next day, and I'm okay for a while.

I'm happy to be that guy.

Complete honesty is not always the best policy ...

I’ve had a hard couple of days.

I’m constantly battling exhaustion and trying to lead a productive life during this treatment. The battle tends to lend itself to irrational bouts of depression. The medication contributes to depression, which is why I’m on a fairly low dosage of anti-depressants, which have kept me out of the deepest pits of blackness during the past four months, but daily situational stuff also contributes.

This weekend my new roommate moved in. She and her mother drove out from Alabama to get her settled. I imagine her mother also wanted to make sure that I wasn’t an axe murderer, which I totally don’t blame her for.

In the three weeks prior to their arrival, I got all of my stuff out of what used to be my office, but which became her room, and painted it. Then I cleaned like a madman for three days because in the manual it says that when somebody’s mother is visiting, you clean. All in all, this took me about 3 weeks. I would work a bit, rest, work, rest, work, rest, ad nauseum, which strikes me as both necessary and pathetic.

Don't get me wrong, I’m very happy that she is moved in. She’s a wonderful lady, a talented artist and a good friend. She and her mother did an amazing job of decorating her room. Hell, it’s the nicest room in the house now. It’s so nice, I feel like I wanna throw rocks at the rest of my house. I guess I just gotta get off my ass, and get the rest of it painted. More work, rest, work, rest, work, rest, ad nauseum.

Back to the point. Lots of anticipation and changes (never mind that they are positive) and spotty sleep cycles have put me into a bit of a downward funk, and I am again faced with how much to share with other people about my general well-being.

I always think that the standard is my step-mother. She has literally walked around with a broken arm, taken a couple of Advil, and not said a word about how much it hurts. She finally went to the ER when I ordered her to get her ass into the truck and have my dad take her for an x-ray. She is and always has been strong and stoic, and the very definition of stiff upper lip, except when she’s really pissed off.

So, on one hand I think I should just get through all of this, don’t mention anything about it to anybody, and just say, "Everything is great!" Strong and stoic wins the day.

On the other hand, there are people that care, and honestly, I’m not doing many of the things that I normally do, and explanations need to be made to some people.

Unfortunately, there is also this pressure inside of me that builds and builds when I get really tired and emotional, and I find myself unable to hold it in anymore, and somebody will either see me crying at my desk, or some offhand joke that I make to cover all the inner turmoil will be seen by an observant friend as a cover, and bring it to my attention, and I feel embarrassed, weak and like a failure.

This is going to sound crazy, but I feel like I’m not a particularly capable or strong man. This issue is compounded now because four days out of five, I’ve had to go home and collapse onto the couch from exhaustion.

My father asks me all the time how I’m doing, and I always tell him I’m doing fine, just a bit tired. He’s got enough going on in his life and with his own health that he doesn’t need to deal with my daily ups and downs, plus he gets frightened that he’s going to lose me, and I have enough trouble dealing with my own fear at the moment.

Several friends have told me that I can reach out to them if I need somebody to talk to or commiserate with, and they are absolutely sincere and I very much appreciate the offer. However, with the exception of a couple of people, I’ve never felt comfortable calling up somebody and telling them that I feel bad. I guess it is because I’m fearful of being judged, thought of as being weak or a drama queen. Plus, there’s that whole "man" thing. Men don’t express their feelings, they shuffle along, do their job, and let the rest of it go undealt with.  Right?

The crazy thing is that in my head, I’ve got all this crap going on, and the part of me that doesn’t like the other part of me, judges the crap constantly. Let me tell you, it can really wear one down.

I must say that I find it interesting that many of those people who say to call them if I need something, haven’t called or e-mailed to check on me even once since this whole thing began. I guess this is when one learns who really is a friend, or merely an acquaintance.

As I’m looking at all this, I guess the "answer" if there is one, is that I need to understand who is in the trenches with me, judiciously pick when to share the deep crap so that nobody becomes burdened by it, and to everybody else, just say, "I’m doing great, thank you for asking."

The truth is, the only person who is really in my head and sees the totality of my daily mishegoss is myself. Everybody else just gets the edited version, and that’s just the way life and the world are.

Maybe that's the way it should be, too.

An Observation ...

I've noticed the oddest thing about people lately.

There have been a couple of times when my current health status has come up with casual acquaintances. I always say something fairly vague, such as "I'm going through some medical stuff, right now" hoping to minimize the dialog about specifics, but not actually like or reduce the communication to everyday platitudes.

If somebody had given me that information, I would have said, "are you okay?" or "do you need anything?" or something similar.

Interestingly enough, most people haven't responded that way.  They've immediately gotten a funny look on their face, followed by a startingly abrubt change in subject.

Don't get me wrong, I'm totally fine with it, but it is quite interesting to see that reaction.  Are people frightened of this subject?  Is it just a display of etiquette?  The old, "shhhhh, don't embarrass anybody?"  Uncomfortable?  I honestly don't know.  But it is fascinating, and maybe the next time I'm working on a character, I'll remember that reaction.