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.

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.

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.

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.

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.