Day 17 Night - Major Decision Made, Joining New Clinical Trial in Los Angeles

I must admit that making this decision has left me somewhat drained. After an initial sense of buoyancy and excitement, I already am closing in on the tough reality of starting treatment. Since the treatment still involves Interferon and Ribavirin, the antiviral medications that work to stop the virus in your system while making you quite sick with flu-like symptoms, it is scary to say the least. In addition, I have to do a liver biopsy in the next week and any invasive procedure is frightening. But these are the consequences of my actions and of my disease, and I must face them by walking a path of courage. With a lingering tinge of fear because honesty remains a priority.

Cedars Sinai Medical Center - 8631 My Morning Destination

Let's start at the beginning of the day and move forward. Although it is past 3am in the morning and tomorrow I am getting a cat scan, I already slept for over five hours. When I got home tonight, I collapsed on the couch and fell into a a deep sleep of strange and reflective dreams. But that is another story altogether. This morning, I met with Dr. Graham Woolf, a top hematologist at Cedars Sinai medical center. After looking at all of my lab work (my viral markers — pcr 2.3 million viral lode, genotype 1a, alt 241 elevated liver enzymes showing minor inflammation, normal CVC), he discussed my treatment options.

The two FDA approved medications that have been home runs and changed the Hepatitis C playing field are Encevik and Victrellis. Approved in the last couple of years, they are protease inhibitors that prevent the spread of the virus. Since they are first generation drugs, the dosage regime remains in the evolving stages with serious side effects. Almost 70% of the people taking this drug get a serious skin rash all over their body that has to be treated with Benadryl and Cortisone. Given the nature of my skin and my tendency towards a certain itchiness here and there, I believe it would happen to me. And I simply do not want that to be part of the array of side effects that I experience. The rash is so bad that 6% of the people who do the treatment and get the rash drop out within the first couple of months. That is the first problem with today's treatment regimen.

The second problem is the vast quantity of pills that have to be taken on a daily basis, turning a patient into a walking medical cabinet. I might have my numbers slightly mixed-up so I will say that it is between 18 and 24 pills taken every day (the Encevik and the Victrellis) on different time tables (every two hours and every eight hours). The pill regimen is so intense and confusing that the doctor showed me complex charts given to te patients and told me about a new iPhone application designed to help you keep on track with the exact dosing schedule. The real danger is that if you fail to keep on track because you are exhausted and overwhelmed and sickened by the Interferon, then over a period of time, it is quite possible you will become resistant to the treatment itself. Literally, you can "X" yourself out of the process. Honestly, I am willing to roll the dice. I do not want to be a walking medicine cabinet for six months because I believe it will effect the very essence of who I am. Perhaps a logical fallacy on my part, but a lurking fear nevertheless. A bit like Binkley in Bloom County and his courteous closet of anxieties. God, how I identified with Binkley when I first read that cartoon - his passion and his fears.

Binkley and his Courteous Closet of Anxieties in Berke Breathed's Bloom County

So what is entailed in the new clinical trial as opposed to the old regimen. As opposed to 24 pills a day, it is reduced to 2 pills a day and the chance of getting a rash is reduced from 70% to 6%. Personally, I like those numbers a whole lot better. Mind you, it is a triple armed trial with 1/3 of the patients receiving a placebo, 1/3 receiving 1 placebo and 1 pill and the last 1/3 receiving 2 pills. Since it is a Phase III trial, they are trying to work out the proper optimal dosage. Doctor Woolf believes the new drug - a second generation protease inhibitor - will be approved by the FDA and be in general use by 2015. He asked me if I would rather drive a 2010 Mercedes or a 2015 Mercedes. Since I have always been a futuristic kind of guy with a bit of wishful Willy Wonka Golden Ticket thinking, I choose the 2015 Mercedes.

Okay, that is enough for now. Tomorrow, I go into Kaiser for my Cat Scan to see what the small 1.7cm by 2cm lesion is in my right kidney. But that's a whole different story and most likely, nothing to worry about. Just a bunch of fatty blood cells. Mind you, when you ask your doctor about how the Ultrasound went in regards to your liver and he tells you they found anything anywhere else, particularly in another major organ, it is less than pleasant. C'est la vie... I have faith that everything's gonna be alright. And, unlike that prophet named Bob Marley, I am completely sober today for exactly 3.5 years and off the hard drugs for well over 7 years so I have no ganja to reenforce such a perspective. Instead, all I have is the love and support of my family and friends, and my faith in the path that this universe has laid out before me.

Day 5 Afternoon — The Fast Begins (One Wild And Precious Life)

As the weekend begins at 5pm on Friday, I start a Fast for the next 15 hours or so to prepare for an Ultrasound of my abdominal region, focusing naturally on my liver, that will happen in Saturday morning. Yes, my appointment is at 7am in the basement at Kaiser Hospital when I guess they will brighten my belly with ultrasound jelly. It has grown in size in recent years to the point that demands reduction, but not quite yet verging on Couch Potato Hall of Fame induction criteria. Aside from a liver biopsy which is done with a humongous needle and the prospect of which utterly freaks me out, an ultrasound is the best method of finding out how my beleaguered organ is faring in the Hepatitis C siege. It feels a bit like a roll of the dice in Las Vegas with my belly being the craps table.

What I appreciate at this moment is the spiritual component of a fast. Like in the tradition of my tribe during Yom Kippur, I hope the fast allows me to shed in a metaphorical fashion some of the past sins that led me to this health crisis. Can I be forgiven for mistakes made under the influence of my disease of perception? When I look back at the last days of my addiction (was that a subliminal reference to the Gus Van Sant fictionalization of the death of Kurt Cobain), the insanity is mind-boggling to recall and becomes more and more so as the years pass. I cannot imagine what the hell I was thinking in the depths of my disease to create such havoc (I hate using the word create in such a disgusting context) and render such pain on my loved ones.

The many struggles I have encountered on the road of sobriety have slowly taught me to embrace and celebrate the gift of this rare human birth. Mind you, I do not really believe in reincarnation with an agnostic perspective at best. When it comes to such questions, I tend to side with Woody Allen: "I do not believe in an afterlife, but I am bringing a change of underwear just in case.

Nevertheless, the implications of the phrase "this rare human birth" are so powerful and moving because it emphasizes the true value of the gift of life. It reminds me of one of my favorite poems The Summer Day by the poet Mary Oliver, and I think I will exit by presenting you with the second half of the poem  below. If you have not read the works of this living giantess of American expression, then pick up her selected works as soon as you can. She is a voice of beauty and consolation, faith and revelation that expresses so clearly our sacred place in this world and the responsibility we have been given to protect the wonder of such a birthright. Here are the last nine lines of The Summer Day by Mary Oliver.

I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?