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.

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.

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!

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!