Monday, March 3, 2014

It's a Brand New Day.

It's a brand new day. 

Yesterday, a young friend of mine posted a funny story on Facebook about a "middle aged" man that he had seen at the gym.  I instinctively cringed a bit as I read it, especially when he revealed that the guy was in his mid- to late-forties.

The cold, hard fact is that I am middle-aged.  I just turned 46.  Multiply that number by two, and you get 92.  That's a pretty ripe old age to aspire to.  The first time my therapist referred to some of my issues as having to do with being "middle aged," I almost cried.  My ass sags, a fact which I am happy to blame on my mother's contribution to my gene pool.  The pant size I am currently wearing doesn't exist at Macy's.  The arm muscles which I used to be so proud of seem barely there.  I shave my head so I can forget once in a while that I actually have no hair on the top of my head, whether I shave it or not.  The lines on my face get deeper and deeper with every passing hour. 

We live in a youth-oriented society.  We love to see the smooth young skin, the innocent eyes, the faces not covered in laugh-lines, the unconscious swagger and confidence that defines a 20 something's walk, the six-pack abs, the full head of hair, and the promise of a lifetime ahead of them.  We love to watch the hope of a new generation.  Let's face it, we also don't mind so much the perky butts, the six-pack abs, and the ability to become sexually excited without having to think about it or mortgage the house for the little blue pills.

I am struck by the fact that my reaching middle aged seems some sort of failure.  God forbid that I have a stomach that sticks out, or that I have to pull my ass cheeks up to clean under them, or that my hairline stopped receding after it had nowhere else to recede to, or that my biceps don't bulge like they used to.  Or how about the fact that going to bed at 10:30 p.m. on a work night seems late?  Or how about the tacit surrender at 6:00 a.m. when I opt to put on the "relaxed" jeans, and the XXL t-shirt to trudge off to work in?

I always felt the need apologize for all of that, even if just silently.

Well, honey, it's a brand new day.

It occurred to me that not only did I just turn 46, but I just marked 24 years as being HIV+.  If you do the math, you'll realize that I seroconverted in 1990 at the age of 22.  I should be dead.  Really.  Dead.

Middle-aged means I survived.  I survived AIDS, including AZT, Crixivan and resultant kidney stones, Sustiva and 10 years of nightmares in Technicolor, and other medications, the names of which I can't recall, but which I do recall made me feel crappy.  I survived Hep C, two failed treatment regimens, and the evilness that is pegylated interferon.  I survived drug addiction, alcoholism and depression.  I survived the passage of Prop 8 and two terms of George W. Bush.  I survived the loss of my personal faith, being told by devout Christians that I was going to hell right along with everybody else like me, and the period of time in which I was deathly afraid they were right.  I've gotten through the illness and loss of a parent.  I've survived a marriage and a divorce.  I've been defeated and abandoned and lost, and had my heart broken into so many pieces I didn't think there was enough super glue on the planet to put it back together again.  I've survived my legions of mistakes and the darkness of my own humanity.

But you know what?  "I'm still here."  To quote Mr. Sondheim.

Not only did I survive, but I thrived.  I've held a job for 19 years.  I've taken pills to keep HIV from killing me for almost that long.  I've studied the arts.  I've played some of the greatest Shakespearean parts ever written and directed some shows that cut to the heart. I've sung. I studied ballet in my late 30's.  I've told stories and spoken other's words.  I've loved intensely and forgiven with gusto.  Mourned the passing of friendships, smiled at a stranger and been struck with the amazing force of a friend's love for me.  I've hoped and I've dreamed.  I've struggled to be better, to be more loving, kinder and gentler.  The days that I chose not to give up far outnumber the days that I have.  I've had spiritual experiences that boggle the mind and overflow the heart.  I've seen the presence of Divinity in the smallest of miracles and in the greatest of events.  I've prayed in a forest, and let my soul fly free with the wind.  I've had long conversations with passing animals and let them heal my soul.  I've knelt in empty churches and felt the prayers of countless worshippers and the comfort of God.  I've told my truths and let the chips fall where they may.  I've felt the hope of youth inside of me, even now.  I've gloried in the sight of beautiful men and giggled with the humor of mankind.  I've done all those things and more.  I still do them.  I hold the possibilities of my life in front of me, and I hunger for the expansion of that knowledge and that love of my fellow humanity and the earth which keeps us close.

Middle age?  It's not something to apologize for.  It's something to celebrate, admire, and appreciate.  It's something to aspire to.  Not something to draw away from in shame. 

It's a brand new day.

The next time somebody refers to a middle aged man at the gym, I'm going to smile really big and say, "How exciting!"

Because it's a brand new day.

Friday, May 18, 2012

The Night Before Opening ...

The Night Before Opening ...
It's the night before the opening of a Midsummer Night's Dream.  I have the awesome gift and responsibility of playing Oberon, King of the Fairies.
It's the first Shakespearean play that I've performed in since I played Macbeth four years ago.
I'll tell you that I'm exhausted.  I'm so tired I'm not sure that I'm going to be able to sleep right away.  I'll also tell you that I'm scared.  So very scared.  It's the first time I've performed somebody else's words in what feels like forever.  What wonderfully old and powerful words there are in this play.  Poetry that that's so rich and so layered and so full of possibilities that it thrums with power.  When I say those words, the worry in my soul quiets, and I'm in awe of their power.
I'm scared that I've gotten too old, too fat, too ugly, and that my memory is going and I'll forget a word or a sentence or a cue.  I'm scared that I won't be able to convey all that delicious meaning.  I'm frightened people won't laugh.  Fearful that people will hate me and throw things at me, or, worse, tell me it was nice, all the while anxiously looking at their watch, and wondering how long they'll have to talk to me before they can escape to where they can make fun of me in private.
It's the night before opening, and all that crappy stuff is running through my head. 
But holding back the craziness is the certainty that, in about 22 1/2 hours, the lights will come up, the music will play and the magic of the theater will lift me up.  I'll be able to live my time as the King of the Fairies.  I'll get to have a grand old time with my best friend, Puck.  I'll fight with and love Titania, my Queen and the most beautiful fairy in the world.  I'll get to cast spells on the helpless lovers, laugh at their foibles and then put them all back together again, and they will live happily ever after.  For 2+ hours, I'll be immortal and I'll be powerful.  My feet, my elbows, my back and my head won't hurt, and I won't be tired.  I'll laugh, rage, joke and live those words that come bubbling up from Oberon's soul.  For a bit, I'll be perfect.
It's the night before opening, and the air is pregnant with tomorrow's magic, and life is beautiful.

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.

Friday, August 12, 2011

The Cycle ...

I haven't written poetry in a very long time.  Last night, I couldn't get to sleep because an image kept flitting through my mind, so I decided to write it down, and see where it took me.

The cycle of the day pauses sometimes.
A moment holding back eternity.
Bravely a sliver of sunlight teases.

The dancing Wind laughs at a cosmic joke.
For skipped heartbeats, I never understand.
The next beat?  A glimmer.  My dance begins.

I wonder if Night minds a late entrance.
Perhaps not.  After all, She's never gone.
A pause.  A pounding.  I feel the stars dance.

I giggle at a soul's perfect vision.
My eyes can't see stars.  A dancing heart can.
There is a simple rhythm in my life.

In the briefest serenity, I hope.
I pray those who care will walk next to me.
I hope their memories are that I lived.

I lived when life was full, and joy was all.
When laughter was innocent and carefree.
When we danced on the wings of evening Winds.

I hope they remember that I was whole.
I was free for the briefest of seconds.
When the Wind would dance and the Sun would laugh.

If they do, they'll know I'm dancing on Wind.
Laughing with the Stars; joking with Sunlight.
Knowing that the Cycle begins again.

Thursday, August 11, 2011

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.

Wednesday, August 3, 2011

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.

Tuesday, August 2, 2011

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.

Monday, July 25, 2011

What does it mean ...

What does it mean that I've been working on the same bar of chocolate in my freezer for a month now?

And there's still a piece left.

Have I lost all sense of what's important in the world?


Thursday, July 14, 2011

Weellllll .....

Tuesday, I met with my liver doctor to discuss the 12 week blood test results.

The short version?  The treatment isn't working as we had hoped, but there's still a chance that it could work.

The longer version is this.  By this time my Hep C viral load should be undetectable.  It's not.  After the initial very large drop in viral load, the viral load has refused to go any lower.

The doctor's advice is to wait until week 24 to see if I'm what's known as a "slow responder."  If I am a slow responder, my Hep C viral load will have dropped to undetectable by then, and I will be on this treatment for an additional year, with the hope of a "cure."

If I do go on for another year, I will be taking a long, hard look at my empty wallet, trying to figure out how I'm going to pull another $4,000 out of my butt to pay for another year's treatment, and probably shedding a tear or three in frustration.  Thank goodness for my insurance, otherwise it would be MUCH worse.  Of course, it's also another year of side-effects, none of which are fun.

If I do not become undetectable by week 24, treatment will stop, and I'll continue to live with this disease until something better comes out, I die from liver failure, or I get hit by that proverbial bus.  There are two new medications on the market, but they are useless in treating my specific genome.  There might be another medication coming out, but if it does, it won't be on the market for a very long time.  The silver lining in this scenario is that my energy should return, the side-effects of the drugs will go away, and I can get back to doing all of the things I'm used to doing, but can't do right now.

If my liver continues to deteriorate, there is a possibility of a liver transplant, but that only comes when I get to stage 4 with complications.  I am currently at stage 3.  The whole transplant issue is complicated by the fact that I'm HIV+.  When my friend, Rae, was dying of liver disease and co-infected with HIV, there were only a couple hospitals in the country that did liver transplants on HIV+ folks, and there were very strict standards and many hoops to jump.  She wasn't able to get a transplant before she passed away about 5 years ago.  Her passing still hits me in the gut when I think about it.

I asked the doctor what the usual progression of the disease was.  After he hemmed and hawed a bit, I gave him a stern look, and told him just to give me a ballpark figure.  15-20 years.  I've been Hep C+ for at least 15 years, probably closer to 17.

When I first heard all this, I panicked a little bit.  I hadn't realized how much I had gotten used to the idea of expecting to live to a ripe old age of 75 to 80 or more.  It's funny how hope can insidiously lead to expectations.  So, after 21 years of being HIV+, and being  treated very successfully for that disease, dealing with the specter of living for only another 5 to 10 years is raising its ugly head again.

It's a bit of an emotional ride, let me tell you.

I remember when I was first diagnosed with HIV, the phrase, "don't worry about it, you could also get hit by a bus tomorrow" was said all the time.  Either I said it or the people around me said it.  I guess it was a ward against the fear that permeated my life (and many others) at the time.  I remember how angry and grief-stricken I was for a long time.  I also remember that I didn't handle that stress well.  What I remember the most is that I didn't think I would live past 30.

Last Groundhog's Day, I turned 43.

I got through all that, and here I am, still very much alive, productive and living a full-life.

The trick for me is to not give into hopelessness.  You gotta pursue your life, right?  When it's time to die, it's time to die, before then, it's time to live.

So, I'm going to end by quoting Dolly Parton, and say, you'd "Better Get to Living."

Thursday, June 30, 2011

Having a hard time today ...

As of today, I'm halfway through the original treatment time period.

Of course, I still don't know whether the Hep C viral load is undetectable or not.  I won't know for another week and a half.  If it's not undetectable, there is still the possibility that instead of 6 months, I could be on these meds for 18 months.  18 months is going to be a difficult slog, both physically and financially.  However, I'm doing my best not to get caught up too much in what the future is like.

Honestly, today is hard enough.  I'm tired, working without backup at my job with several big projects coming due, and I was also informed that the theater company I work with needs volunteers to take down and build a set this weekend.

Fortunately, it's a three day weekend, but honestly, I was hoping to get my own house cleaned up this weekend, and still get some rest.  Going home and collapsing on the couch from exhaustion after work doesn't contribute to a lot of dusting and cleaning, and my place is an absolute wreck.  Again.  How did that happen so quickly?

In predictable news, the cats haven't offered to fill in the house-cleaning slack.

I also had a somewhat depressing conversation with somebody last night that left me reeling.

I'm not used to not having enough energy to do all the things I need and want during the day, and I guess that's the biggest drawback of this medication right now.

I've taken on some new duties at work, which I'm actually excited about, but sometimes my perfectionism steps in and I think I should be learning everything much more quickly, and I start to feel bad about myself.

The cherry on the top is that I'm putting on weight, and I feel like my belly is distended all the time and that my arms and legs look like sticks, which doesn't help my issues with feeling ugly.  It actually makes me kinda wanna hide in a closet somewhere.

This is all a long way of me saying that I'm feeling a bit down today, but given my predeliction for bouncing back, I imagine I'll be fine in a bit.

Wednesday, June 15, 2011

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.

Wednesday, June 8, 2011

Tired is the new good ...

... or is it "Good is the new tired?

I've been on these meds for about 2 1/2 months now, and everytime somebody asks me how I'm doing, I say, "I'm good, just a bit tired."  It occurred to me the other day that just shortening it to "I'm good" would be better.

I'm not a big guy for sharing every detail of how I'm feeling with other folks, especially when it comes to describing my physical state.  Honestly, many people don't care or don't know how to handle my personal trials and tribulations or want to.  There are of course folks that do care and are willing to listen, but I often feel like I'm taking advantage of their kindness by blabbing about myself, so I try to keep it to a minimum.  There's of course, a truth that I'm afraid of being vulnerable with most people.  I guess that tops the list as to why I'm single.  hahaha.

On the other hand, I'm also a guy that strives towards honesty with others.  I'm always torn between telling the absolute truth when somebody asks me how I'm doing, and the socially acceptable answer, "I'm good!"  So, I tend to land somewhere in the middle.  Hence the, by now, stock answer of "I'm good, just a bit tired."

The fact of the matter is that I'm going to be tired until this treatment is over.  The fatigue is constant and, for the most part, bearable.  Telling other people that I'm tired doesn't serve a purpose, except to expose a bit of my natural flair for the dramatic, and my neurotic need for attention.  I detest the part of me that craves attention.  Guess that's one of the reasons I'm an actor; it gives me something of an outlet for that part of me.

From now on, I'm going to do my best to just say, "I'm good" whenever anybody asks me how I'm doing, and leave the rest of it out, unless I'm lying in the hospital hooked up to an IV, and then you can all expect that I will be indulging both my natural flair for the dramatic and that neurotic need for attention.

Tuesday, June 7, 2011

Grandma ...

My maternal grandmother passed away just before Easter.

I’ve been struggling to find some way to organize into coherency my thoughts and feelings about it.

As an adult, we weren’t particularly close.  She was a very strong and opiniated person and so am I, and the combination of our strengths and differing views of the world, along with my inherent and somewhat neurotic need to protect myself from rejection, kept me from cultivating a deeper relationship with her as an adult.

I went up to Fresno to attend her funeral and see the rest of the family, and do my best to support them, and in some small way, say goodbye to the last of my grandparents.

I wasn't quite prepared for the deluge of memories and varied emotions that awaited me.

After the funeral, my mother, step-father and I took a ride out to my grandmother's property in Clovis where I spent a lot of time as a kid with that side of my family: my grandmother, brother, mother, cousins, aunt and uncles.  The small memories, things I hadn't thought of in years flooded back so much that I kinda felt I was living simultaneously in the present and the past.

Memories like watching my cousins Tanya, Corky and Dayne walking up high on one side of the land so they were silhouetted against the sky.  Small little sense memories like all the frogs and toads that came out in such large numbers that it was impossible to not step on them, as much as I tried.  The absence of the sound of traffic that always made me a little uneasy for the first day or so, and the crickets and bullfrogs singing at night.  The life lessons my grandmother taught me, sometimes not particularly gently, but effectively.  The times when we went with her and my mother on trips in a motor home to various parts of the state.  Sundays at Carl's Jr. or Denny's after church.  The two memories I have of my grandfather (he passed on when I was very young).  When we all laughed.  Sleeping on her screened porch always sort of seemed the very definition of summer to me.  Of course, there many other memories that will keep me company through the years, like when she taught me how to hop over a fence.

Looking back, I'm not sure, given who the two of us are, we could have had a stronger relationship after I became an adult, but I certainly appreciate her place in my life as a child.

I miss her more than I expected.

Be blessed, Grandma.  You'll always have a place in my heart.

Wednesday, June 1, 2011

A tad bit annoyed ...

Yesterday I was a tad bit annoyed with the people who schedule my appointments with my liver doctor.

When I see my liver doctor, he always wants to see me 4 weeks after for a follow-up, which is fine.  The nurse always tells me to speak with the receptionist to make the appointment.  The receptionist always tells me they don't have an appointment available, so they'll have to fit me in, and that her supervisor will call me.  All well and good.

Over the past couple of months, the supervisor will call me, and give me one option for an appointment for three weeks from my last appointment.

It annoys me that after the doctor specically tells me four weeks, the supervisor schedules me for 3 weeks.  For all intents and purposes, I'm seeing the doctor a week earlier than he wanted to see me one month, which translates to two weeks earlier the next month, and then three weeks earlier the month after that, etc.

It sort of got to me yesterday, because this next appointment and it's attendant blood test results are going to be the deciding factor about whether I have to do this for 6 months or 18 months.  I'm afraid that they're taking the blood tests too early, and that the medication won't have had enough time to work, and then I'll be on this medication, possibly needlessly, for 18 months.

As this treatment goes on, I'll be dealing with more and more side effects, not to mention that if it stretches out to next year, I'm looking at another $4,000 in treatment costs.

Fear and I are not something that go together well, and although I do my best not to lash out (especially after a couple of years of therapy), I realized yesterday that I'm really dreading the next appointment and blood test results.

The good news is that I think I didn't come across as insane, just a little petulant and pedantic, but that's okay.  Once I got a chance to breathe, take a look at the situation, and give control of this stuff over to the universe where it belongs, I just shrugged my shoulders, calendared the date and went on about my day.

This whole process is a huge lesson in taking things one day at a time and trusting in something other than myself.

Wednesday, May 25, 2011

Medical update ...

I might have to be on this treatment for 72 weeks ... a year and a half.

I didn't know this.

Right now I'm only scheduled to be on treatement for 24 weeks.

I'm almost at the two month marker since I started this treatment.  Mostly, I'm handling it pretty well.  There was a concern about my red and white blood cell counts, but they're just a little bit low, not a whole bunch.  One doctor had prescribed Procrit for me (which is expensive and would require me to self-inject another time once a week ... I'm getting a tad bit tired of needles ... my left thigh looks like a junkie's nightmare).  But both doctors ultimately decided that I didn't need it.  Thank goodness.  I don't quite now how to go about getting all that pre-authorization for medication done.  It's easier when the doctor's office spearheads it.

Next month, the results of the blood tests will decide whether I go for just 6 months.  The key test is the Hep C viral load.  According to blood test paperwork, in February it was 1.3 million.  Then it went down to 74,000 a month ago then down again to 34,000 a week ago, then back up to 61,000 this week.  If you can remember back to high school math, you'll know what logs are.  They measure progress by the reduction of logs.  So, there is a difference between 64,000 and 640,000 and 6,400,000, but very little difference between 64,000 and 31,000, if that makes any sense.

The goal is for the viral load to be undetectable by the next time my blood is drawn in 4 weeks.  If it is undetectable, I have a really, really good chance of being "cured."  If it is not, my chances are much less.  However, the doctor said that there are a couple of papers out that indicate that slow responders sometimes do manage to be "cured" if they go for 72 weeks.  He basically said that we'll see what happens next month, and make a decision.  Apparently, some people give up if they're not at undetectable in three months.  Knowing me, I'll probably sign up for the 72 weeks.  Because I'm stubborn.

Having said that, damn, that's a long time to feel like you have the flu, not to mention many of the other side effects.  One of these days I'm going to upload my notes on the 45 minutes of conversation that I had with the teaching nurse about possible side effects.  Some of them are not attractive, to say the least.

However, despite being a little bit scared and a little somber today, I'm keeping my chin up, my hopes high, and putting one foot in front of the other, and doing my damndest to take life one day at a time, and of course, being sure to take the occasional swim in my pool and time to cuddle with my cats.

Wednesday, May 4, 2011

Good news!

The treatment is working!  Woohoo!

I went to see my liver doctor yesterday, and he told me the results of my last round of blood tests, taken a week ago.

The most exciting news is that the viral load of the Hep C virus was at 2.5 million, and it is now 75,000.  They hope that within the first four weeks the viral load comes down two logs.  In other words from 2,500,000 to 25,000.  Mathematically, there is not much difference from 75,000 and 25,000.  What this means is that I am indeed responding to treatment.


From looking at my test results, my white and red blood cell counts are a little low, but not more than they were before treatment started, so I guess he's not worried about it.  :)

Now, onward and upward!

Friday, April 8, 2011

Day #1 ...

I had an appointment with a very nice nurse named Val at UCLA last night, and she filled me in on how to administer my injections, and also about side effects and how to counteract them, etc.  Then I did my first injection.

This morning I woke up feeling a bit like I had been hit by a truck.  Achy and tired.  Then I took the other medication with breakfast while at work, and I felt like I was speeding for a bit.  Now, I'm crashing again.  LOL.

It's going to be a fun 6 months!!  September 30 is the last day!!

Saturday, April 2, 2011

Spring is here ...

I love when spring comes around.

Buds coming in on the potted peach tree on my patio.

New growth at the bottom of the peach tree.

The fresh leaves on my ficus tree.

An early rose.

Fresh growth of rose leaves and the faintest signs of rose buds.

Leaves are finally growing back on the tree that was brutally
trimmed this winter off my front upstairs balcony.
Another view.


Thursday, March 31, 2011

Finally ...

One of the two liver meds was delivered today.  The second one will be delivered on Tuesday.   I have an appointment on Thursday evening to get trained on how to administer the injectable drug.  And the six month count-down begins.


Tuesday, March 29, 2011

Nervous ...

I got a call from the pharmacy that my liver doctor had referred my meds to.  They can only fill one of the prescriptions, the other needs to be filled by my insurance company's contracted pharmacy.  I was given their number and told to call them and set up a delivery.  I did call them, but they are still waiting for final authorization from the insurance company, which should be forthcoming in the next day or so.  Then we'll have a conversation about delivery and co-pay, etc.

Right now, for some reason, I'm more nervous about this than I have been so far.  Feels like efalumps are running around in my stomach.

Monday, March 28, 2011

Meds update ...

I started the new HIV meds and the generic form of Prozac this weekend.  So far no noticeable side effects, thank goodness.  Keeping my fingers crossed that there won't be any.

I also just got a call from UCLA, and the pharmacy that will be handling the meds for the Hep C should be contacting me in the next day or two about getting my first month's supply delivered.  They are just waiting for final authorization from the insurance company.  As soon as I receive the meds, I have to set an appointment with a nurse at UCLA to teach me how to administer the interferon, and then the six months of treatment finally start.


Saturday, March 26, 2011

My first full-sized quilt ... photos

Here are some photos (unfortunately, not of the best quality) of the first full-sized quilt I ever finished.  It took me a LONG time to do (as in over a decade), but I was very happy with it when I finished.

It's called a "jumble quilt" and I didn't do all the work on the top part, lots of people helped, but I did a good portion of it, and I did all the quilt stitching and seam binding:

Here's a picture of one of the corners that shows the seam binding on the front:

Here's a shot of a corner showing the seam binding on the back along with the back stitching:

Here's a shot of the back of the quilt (folded in half) ... gives you an idea of the flavor of it:

And one more shot of the whole thing:

Thursday, March 24, 2011

Beautiful photography ...

In my blog travels, I ran across this photographer, who has some really beautiful pictures that I'd love to have on my walls in my house.  His website is a bit strange, so I've put the link that shows his "new work."  There's a lovely picture of two men lovingly embracing in a sauna that really speaks to my heart.

Update ... reach around ... wankage ... whatever. ;)

I'm still waiting for the Hep C medication to be pre-authorized by my insurance company.  The delay seems to be coming from some misplaced blood test result.  So, I keep calling the doctor's office.  Oy.  Can't WAIT 'til this thing gets started, as I'm a little fried from the anticipation.

I went to visit my parents this weekend.  My mom's going through some medical stuff herself, and although I've been talking to her fairly regularly and know what's going on, I was a bit freaked out by how it was affecting her.  I went to say goodbye to her on Sunday, and gave her a long hug, and almost broke down in tears.  Fortunately, I covered and she didn't notice.

My father is going to be taking a week long trip to visit his brother (who is also ill), and so is arranging for people to stay with my mom.  My sister is the first choice, given that she doesn't have a job, and is very close to my mom.  She asked me if I would help out with some of the time, and I was so freaked out in that moment that I said no.  I spoke to her two days later and apologized for the "no" and had a long conversation about how to make sure she isn't the one who always has to deal with the sitution.  This is when I need to open my heart and be willing to step up to the plate.  Sometimes I worry that I'm not particularly brave when it comes to things that matter.  I guess one has to be conscious and willing to be brave ... it doesn't come naturally, at least not to me.

My sister said that my mom had called after I left and was worried about ME, and that I was too thin, and that I must not be eating.  My father called the next day and also said that I looked unwell.  Not a good shot to my ego.  Especially since my scale is telling me that I'm 217 lbs, which is about 10-12 pounds heavier than my lowest weight.  I asked Michael if I looked unwell, and he just said that I had lost some weight, but that I looked fine.  I think what people are noticing is that I've lost a lot of my muscle mass in my arms, chest, back and legs.

Intellectually, I'd like to go back to the gym, but I just can't seem to muster the energy.  I had started walking again, mostly because my doctor told me to get to exercising to deal with my blood pressure, but my left heel kills me after walking a bit, and I end up limping.  So, I'm at a loss as to what to do.  I could use a work-out partner, but am not sure how to make that happen, given where I live, etc.

The last doctor I saw was my HIV doctor, and this is what came out of that meeting:

1.  She is putting me on a low dosage of Prozac because the interferon, etc. tends to cause depression, and since I kinda battle it anyway, it's not a bad idea.

2.  She cautioned me that I might find myself using again due to the emotional stuff that comes up on treatment.  I was a bit taken back, but rather than defend myself and my sobriety, I merely nodded and listened.  Honestly, I've got 8 years of continuous sobriety under my belt, along with a support system to go to in case of emergency, and using is just not one of my options.  It was very sweet of her to say that if I did find myself using, not to worry, she would still take care of me.

3.  She's taking me off Trizivir for HIV (which contains AZT) because it is contra-indicative to the interferon that I'll be taking.  She's replacing it with two meds, Viread and Epzicom.  Those meds have been ordered from the mail pharmacy (along withe Prozac), and I'm just waiting for them to show up.  They're late, and I'm starting to get worried, but I'll wait 'til Monday, and then call and find out how to deal with missing meds.

*UPDATE*  My meds showed up in the mail today!!  Woohoo!!

4.  She wants me to see her every month while I'm on treatment for Hep C.  So, I'll have two doctors keeping an eye out for me.

5.  My blood pressure was high again.  Rather than throw more pills at me, she asked me to look at my diet and exercise program.  Both are out of whack, so I'll have to figure it out again.  On the food front, buying good quality food is a bit impossible at the moment, given food prices and my general lack of funds, so I've been relying on pastas and lunch meat, etc.  Will have to rectify that very soon.  The target blood pressure is less than 130 over 85.  I'm normally at about 140 over 90.  When I had it taken at the doctor's office, it was 151 over 101.

6.  She suggested that I find out about FMLA, if I need to take some leave from work due to treatment.  I'll have to check it out, but I seem to recall that FMLA only applies for a firm that's got a certain amount of employees, which my firm does not. Plus, me being out of the office for an extended period of time will be detrimental to their business, and the security of my job ... would really rather not do that.  Having said all of that, it would be good to at least know what's out there.

7.  She also suggested a support group at UCLA for Hep C, at least once.  I'll check it out, as soon as I find out the when and what of the nurse practitioner lesson about managing the medication and the side effects.

Alright, end of wankage.

Monday, March 7, 2011

Doctor appointment stuff ...

I just got back from my appointment with the Dr. D (the liver specialist).

-- The liver biopsy showed signs of significant damage, almost cirrhosis, but not quite.  He recommended starting treatment.  Not to be snarky, but I told him a month ago we should treat, and that I'd like to get started NOW.

-- He mentioned a new medication that was coming out, but when I reminded him that he had told me that medication was not used to treat the Hep C genome that I had, he said that we should start with the old-fashioned treatment.

-- This clears the way to start a 24 week course of treatment with pegylated interferon and ribavarin.  (Something about Alpha 2 vs. Alpha 1 ... I didn't know what that meant).  This all could be MUCH worse.  For instance, if I had genome 1, rather than genome 3, I'd have to do a year's course of it.  Ouch.

-- His office will handle the pre-authorization process with my insurance.

-- They will call me to set up another appointment with Dr. D in 8 weeks.

-- About a week and a half before my next appointment with Dr. D, I need to have more blood drawn.

-- As soon as I jump through all the hoops and get the meds, I need to make an appointment with a nurse practitioner at UCLA so she (or he) can show me how to administer the meds, and give me pointers on coping with side-effects, etc.

-- Since AZT is part of my HIV regimen and shouldn't be taken with the Hep C meds I'm going on, I need to make an appointment with Dr. M, (the HIV specialist) to shift my HIV meds around.

Basically it looks like I could be rocking and rolling in 2 weeks to a month.

Liver biopsy done ...

I have decided that if given the opportunity to choose between an upper endoscopy and a liver biopsy, I'll take the upper endoscopy every time.

Liver biopsies?  They tend to hurt. 

Think of it like this.  A very nice nurse gives you just enough sedation to keep you from bitching too loudly, and then a doctor tells you to exhale for ten seconds, while he shoves a knife in your side and removes part of your liver.  Then you're told to breathe normally.

You are then wheeled back to your little curtain-enclosed area, and asked how you're doing.  In answering, I used the term "uncomfortable" while rubbing my shoulder which had inexplicably started to hurt.  The doctor noticed that I was rubbing my shoulder, and said that pain was from my liver as they had to go through my diaphragm to get the liver tissue.  I asked if my liver had moved.  I thought I was joking; he did not.  The doctor said I should take deep breaths.  Easier said than done.

The nurse then brings me some percocet, which eventually allows me to breathe fairly freely.

While grateful that the percocet took away the pain, I wasn't too happy that it knocked me on my proverbial ass for two days.  I ended up calling in sick to work the next day because I just didn't feel comfortable enough to drive.  And then I slept.  And slept.  And slept some more.

I think next time I'll just ask for Extra-Strength Tylenol and grit my teeth and bear it.

Today I find out the results of the biopsy, and then hopefully get this merry go round to start it's next revolution.

Between the doctor appointments, the interminable waiting, financial worries, and my natural insanity, I am not sleeping well, which means I'm sitting here at work today, not having slept more than a couple of hours last night, and trying not to lose my temper over the loud noises and the general stupidity of life, love and the pursuit of happiness, or lack thereof. 

Whew!!!  It's Monday, y'all!

Friday, February 25, 2011

Money, money, money, money, MONEY!

I've got this song stuck in my head with the lyrics "Money, money, money, money, MONEY!"  I can only remember one line of it, and since, let's face it, they lyrics aren't exactly uncommon, I have NO idea what song it is.  It's annoying to have a song running through your head that you can't figure out.  Oh well, I imagine it will occur to me at the oddest of times.

On the subject of money, last night, I got home to find a brochure in the mail from the hepatology department at UCLA with very helpful tips for starting my treatment.  The section that stuck out the most was the bit about finances.

Turns out that the market price for pegylated interferon and ribavarin (the standard treatment) are about $1700 and $1400 respectively ... a month.  They very dutifully warn me that some insurance companies don't cover the medications and that others have a huge co-pay and that I should get my financial house in order if I'm planning on paying for the meds myself.  I pull out my calculator, press a bunch of buttons, and find out that if my insurance doesn't cover the meds, the course of the treatment will run about $28,000 (assuming 9 months of treatment).  Oh. My. Frickin. G-d.

I must admit I panicked for a bit, and I went online to find out my pharmacy coverage.  Of course, that part of Healthnet's website was down for maintenance (that's how I roll).  I went to bed, only to be completely awake 3 hours later obsessing over the whole thing.  I didn't get back to sleep 'til about 4:30.

I got up about 6:45, and went back online to check my coverage.  Turns out self-injectibles (as pegylated interferon is classified as ... I hope) are covered, but I need to pay 20% of the price.  The ribavarin is an oral medication, so my $30 a month co-pay should cover that one.  Which brings the cost for me from a maximum of $3,100 a month to $370 a month.  MUCH more doable.  Still difficult, but doable.  Especially since I don't have the monthly budget to pay for it every month, and will have to rely on savings. Fortunately, I also received my tax returns this morning in my checking account, so I have a couple of thousand dollars to devote to this.  The tax return doesn't cover everything, but it will cover a great deal of it.  Okay, now I'm breathing easier.

I'm going to have to do some fancy footwork toward the end of the year, but in the meantime, I'm going to get through it all.  Oh yes, I am!!  Brief panic aside, I'm incredibly grateful that I have resources to deal with all of this.

I have calls into UCLA to figure out where I go from here, get the pre-authorization stuff rolling and find out when I'm actually going to start getting the meds.  It all should start in the next couple of weeks.  I'm starting to get a little antsy about getting it started, so I'll be closer to getting it ended and back to my old self!

Tuesday, February 22, 2011

Things I did this weekend

Last weekend was the last three day holiday weekend until Memorial Day at the end of May. 

So, here's what I did:

1.  Auditioned for an AFI film in which my character was a middle-aged schlub who works as a fast food employee and is having an affair with a married woman.

2.  Auditioned for the title role in a short film (paying!) based on Aeschylus play "Agamemnon."

(It really is too bad that my casting is so limited.)

3.  Played a truly scandalous amount of an online game called "Battle of the Immortals."

4.  Made (yes, made) pillows for my truck, so if I need to take a nap, I'll be comfortable.  (I'm thinking about changing my middle name to "Martha.")  Pictures to come soon.

5.  Bought the rest of the fabric and batting for my mother's quilt that I'm hoping to get done this year, if not by the summer. I also cut a bunch of fabric for the same project.  I'm hoping to post some pictures soon.

6.  Cleaned my kitchen (and boy, did it need it).

7.  Did all of the laundry but the towels.

8.  Got the finishing touch-up done on my leg tattoo.  By the way, if you ever want a tattoo done and are in the Los Angeles area, Dave Davenport at Marginalized tattoo is not only an amazing tattoo artist, but is just the sweetest guy, and totally adorable.  Alas, he's already taken.  His dog that keeps him company while he works is also very sweet.  You can check out Dave's stuff at (some very adult stuff in his blog, just FYI).

9.  Watched Piranha 3d.  Best. Movie. Ever.  I can't remember laughing that much in such a short period of time.  Michael described it as the Citizen Kane of monster fish movies.  He's not far off.

Friday, February 18, 2011

That was interesting

Yesterday Michael, and I trekked to UCLA so I could have an upper endoscopy done.  It wasn't nearly as scary as I thought it was going to be, although I'm sure it was fairly boring for him.

We got there extra early because we were afraid of the traffic on the 405 (a freeway I try to avoid 95% of the time, even though I live right next to it).  After the initial scare that we wouldn't be able to find parking in the crowded parking lot, we parked and headed up to the third floor of the 100 UCLA Medical Plaza and popped into the Medical Procedures Unit.  I signed what felt like 8 billion pieces of paper, and then waited for over an hour and a half.  Finally, all the pieces came together, and they called me in.

The best part?  They didn't put me on a scale to find out what my weight was.  They just asked what I weighed.  Yes!!  Also in the good news category, my blood pressure was initially 140/84, which is WAY lower than it is when I check in at my other doctor.  Pat put an one id bracelet on my left wrist and another bracelet that said, "Falling Risk" and

The check-in nurse, Pat, then left me alone for a bit with the curtains closed, so I could take my shirt and shoes off and put on the attractive patient's robe.  I snuck out to use the bathroom, and when I came back, a very peppy young gentleman by the name of Clarence came in and observed that I wasn't ready to be transported yet.  My IV hadn't been started.  5 minutes later Pat and another nurse came in while Clarence hovered.  A flurry of activity occurred all at the same time.  An IV was started, blood pressure was taken, an oxygen tube was stuck into my nose, and questions were asked.   Many, many questions.  "What are you having done?" (Ummm, don't you know?), "Are you allergic to any medications?" (for the fourth time, just penicillin) "Do you have Hep C?" (Ummm, that's why I'm here) "Are you on a transplant list?" (What??  Why should I be on a transplant list, my liver's not that far gone, should I be on a transplant list?)  They quickly assured me that it was okay, that they were doing this so I wouldn't have to be on a transplant list.  (Whew!!)

Before I knew quite what was happening, everything was set up, and all the tubes connected, and Clarence was wheeling me into another room where Dr. D said hello in that very charming italian accent of his, and shook my hand.  A student doctor named Maya from the University of Massachusetts was introduced, and I was told she would be observing the procedure.  The nurse whose name I don't remember, (I'll call her Winny, just because) must have asked me three times why I was there and what they were going to do.  I think this was more to make sure I understood what was going on, and that they were indeed doing the right test.

Winny then positioned me on my left side and put some support under my right side, and turned the oxygen on.  I actually felt very comfortable.  Then she said that she was going to give me some medication via my IV.  I said okay.  A couple of seconds later, I felt a little dizzy, but fine.  Then she said she was going to give me some more, and I don't remember anything until another nurse woke me up back in the original curtained area by asking me if I would like some apple juice or ginger ail.  Whoa!  I thought I would be semi-conscious, but I could have been sleeping in my own bed at home, I was so out of it.

After a while, I finished my apple juice (which is good, considering I hadn't eaten or drank anything in almost 20 hours), and I was sufficiently alert so that I could get dressed and ready to go.  Pat thought the doctor was going to come in and see me, but it would take some time since he was in a procedure.  I ended up waiting for him by the patient lockers.  She finally said that since my paperwork said the test was normal, she said I could go, and that I was to call him if there were any questions.  She handed me a couple of instructions papers, one of which was a series of pictures of my esophagus, stomach and upper colon and the words "Normal Test" on it.  I have never actually seen that part of my body from that angle, so found the whole thing quite interesting.  It was really brightly lit though.  I'm thinking about framing it.

I ambled out to the lobby, where Michael had fallen asleep, and then went to the parking lot where I paid for the parking ($11.00!!!).  Next on our agenda was FOOD!! and to get his cat from the vet.

Except for a splittling headache about 10:00 p.m., it all went fabulously, and I'm very happy to know that I don't have to worry about any bleeding nodes as I start this whole medication treatment!

Wednesday, February 16, 2011

Tomorrow is another big day ...

Tomorrow I go in for an upper endoscopy.  Fun, fun, fun!  I have to admit, I'm a bit nervous, but it will be fine.  They're sedating me, and then when it's all over, I'm going to do some serious eating.

On Friday evening, I have an audition for an AFI film, and on Sunday, I have an audition for a short film based on "Agamemnon."  I am auditioning for Agamemnon. I'm kinda excited to be doing some film auditions.  Need to beef up my film repertoir and skills.  I love theater, but it's never going to pay the bills here in Los Angeles, but will help me keep my chops in good working order.

On February 28, I have a liver biopsy scheduled.  Oh yes, that will be fun.  My sister is being a doll and coming in from the Inland Empore to take me to and from the doctor and to keep me company.  After it's all over, there will again be serious eating.  Just sayin'.

Thursday, February 3, 2011

Endoscopy ... here we come

I received a telephone call from UCLA this morning to set up the appointment for an upper endoscopy.

We've set it for February 17 at 12:30 p.m.  The procedure should take about an hour and a half total.  I will be sedated.  Fun, fun, fun.  I'm hoping Michael will be able to take me, but if not, then I'll start looking around for somebody else to go with me and get me home.  ( anybody?  Hey, it worked for George Rekers.)  They won't do the procedure unless somebody is with me to take me home.  I can not take a taxi or a bus.  This really grates on my last "I'll just do it myself" nerve, but learning to ask for help is something I'm working on, so here we go!

Yesterday, I informed the managing partner that I will be going through some medical stuff this year, and that while I hope nothing changes in work attendance, etc. I might have to take more time off work for illness than I normally would.  We didn't discuss what would happen if that time goes over what I have allotted.  I'm assuming I would have to make up the time.  He asked if he could tell the other two attorneys, I said that was fine, but that I didn't want to have long drawn out conversations about it with them.  Mostly, I don't want to have to discuss all my intimate medical details with each of them.  Keeping a healthy distance between my personal life and them has kept me mostly sane for the past 16 years.  Of course, given the fact that I'm recording all of these datails on this blog makes this a bit weird, but hey, welcome to the dichotomy of my life.

I asked about the liver biopsy procedure, but apparently my insurance has declined that procedure.  I'm not sure what that means as of yet, but hopefully it won't kink up any of the works.  I'll call and get more info from Dr. D. soon if it comes down to it.

Wednesday, February 2, 2011

And so it begins ...

I finally saw Dr. D. yesterday (he's my liver doctor), and we agreed to start treatment for the Hep C.

Whew.  The waiting was starting to really get to me.

I can't say I'm not a bit nervous, but, frankly, I'm happy to be starting.  Because once we get started, the quicker we are to having this behind me.

On the side of "life is ironic," there are four genomes for Hep C, conveniently known as Genome 1, 2, 3 and 4.  Types 1 and 4 are the most common in North America and the most difficult to treat.  Types 2 and 3 are rarer, but respond to treatment easier.  I have Type 3.  Type 3 is easier to treat, but I had to laugh a bit yesterday because the new medication I've been waiting for (Telapravir) is not used to treat Type 3, only Type 1.  So, one of the main reasons that I've been waiting for treatment is moot.  However, I'm glad I waited and did the artistic things I did before starting the treatment.  The wait gave me an opportunity to prepare a bit, not get thrown into anything without arranging my life first, and allowed me to do some amazing projects over the past year.

Of course, the FDA has not gotten their heads out of their asses long enough to release Telapravir for treatment, and I'm not willing to wait anymore anyway.

So, it all works out for the best.

As it stands now, the plan for treatment over the next month is to have an endoscopy done to find out if I have any nodes in my esophagus and stomach that might bleed under treatment.  If so, they treat the nodes before beginning treatment.  If I understand correctly, treatment consists of placing rubber bands around the nodes.  Sounds like fun, huh?  Fortunately, when they do this, they sedate me.  I don't know if that means that they knock me out and wake me when it's over, or if they just put me into a twilight zone.

At about the same time, they want to do a liver biopsy on me to see the extent of the damage to the liver.  I've had this before, and it's not horrible.  Again, I'll be sedated (although I don't remember being sedated the last time, but that was years ago).  They also keep me for four hours afterwards to make sure that I don't bleed.  I guess I'll have to bring my kindle.
The only issue is that I'm not allowed to drive myself home after either of these procedures.  I'm also not allowed to take the bus or a taxi.  So I guess I'm going to have to prevail on the kindness of one of my friends, or a convenient stranger.  Maybe I can find somebody on  hahaha.  Just kidding about that last one.  Michael has expressed his willingness to take a day off work to transport me.

I have an appointment with the doctor on March 7 to follow up on all of this, and then I think we schedule the appointment with a nurse to teach me how to administer the new medications, and I'm off to the races.

I also need to make another appointment with Dr. M to adjust my HIV meds because some of them might be contra-indicative with the Hep C meds.  Anemia, etc. is apparently not fun.

All of this reminds me that I need to have some blood drawn today or tomorrow and have the test results sent over to the doctor.


P.S. -- today is my 43rd birthday!  Woohoo!!!

Wednesday, January 19, 2011

Medical Update ...

I'm getting a bit more anxious as the date for seeing the liver doctor approaches.

I am a little nervous about the process, but mostly, I just want it to start already.
I'm starting to feel like a fool saying "no" to the people that are asking me to do theater projects when I'm perfectly capable of doing them now.  I'm also getting antsy about wanting to DO the things I've always done.  I want to take a class or do a play or start dance classes or well, fill in the blank.  Money issues aside, I know that I won't have the energy or focus to keep them up once this all starts, so it's made me a bit crazy in the moment.  Granted, that's not difficult to do, as I tend to live in the "crazy" part of my head.  However, I am trying to find more of the serenity in myself.

I saw Dr. Moe (my regular HIV doctor) on January 6, and she set me up with yet another blood pressure medication.  This blood pressure issue really is starting to piss me off, honestly.  After taking it for a week, my blood pressure was 170/80 this morning.  WTF?  So, I ordered some yoga DVD's and a yoga mat, today.  Hopefully, doing that every day will help the blood pressure issue.  The thing that attracted me to the DVD I ordered was that it had shorter and longer sessions on it, and sometimes 10 minutes is enough, you know?  I'm also going to turn my attention to my diet.  Time to get back on that horse.  Eating properly is more expensive and requires more attention, but it's gotta be done.  I'm important enough.  I won't even apologize for that.  I'm important.

Telapravir is the third medication of the combo they want to put me on for the Hep C.  It was supposed to be out in December, but is still not out.  I've pretty much decided that if it's not out by the time I see the liver doctor on February 1, I will just go on the ribavarin and interferon and hope for the best.  That's the standard treatment at the moment, anyway.  Dr. Moe told me that there is only a 1 in 5 chance of it working, given my HIV status, but I can't continually put my life on hold while the FDA gets its head out of its ass, and there is no guarantee my insurance will cover it even if they do.  So, onward and upward, and we'll see what Dr. Durazo says.  Dr. Moe said that if after three months, there is not enough improvement, we'll discontinue the treatment and wait for Telapravir.

Today I had some blood drawn, hopefully just in time for Dr. Durazo to get it on the first.

I'm having a hard time sleeping these days.  Mostly from anxiety, I guess.  My therapist tells me I'm too sensitive to things.  It's true.

On the artistic side of things, I'm almost finished with a quilt that I've been working on for over a decade.  Considering the fact that I promised it to a dear friend of mine for her wedding, five+ years ago, it's about time.  I've been working on it like a mad man.  I can't feel the tips of my fingers from all the times I've pricked them.

In other news, I'm going in to have more work done on my tattoo this weekend.  I might post some pictures if I'm brave enough, but since it covers from the bottom of my thigh all the way up to the back of my butt cheek, I might just leave it all to your imagination.  :)