An Apology For Not Sharing The Miracle Of Being Cured Of Hepatitis C And A Long Silence

On March 1, 2012, I went in to Dr. Peter Ruane's office on Olympic Avenue in Los Angeles to mark the sixth month of treatment. It actually was a little over six months since I took my first dosage of the drugs on September 18, 2012. I was told I would find out the results of the clinical trials and whether or not I had been clear of the Hepatitis C virus since the 4th week of the trials. I knew that I had been clear for the past two months, but if I had been clear since the 4th week, the trials were over, and I was officially cured. I must admit I was not surprised by the answer.

John Lavitt Taking His First Dose With A Smile On 9-18-11

As I sat in the waiting room, Chris Rice, the nurse who manages the trials, entered my name into the computer database in the back offices. I literally hear a whoop of delight as Chris came running back into the waiting room with my results in hand. With tears in his eyes, jumping up and down, Chris told me that I was cured, the first one in the Los Angeles trials, and I no longer had to take the medicine anymore. Finally, after six months of pain and suffering, it was over. And I was jubilant and exhausted and speechless and calling everybody and utterly overwhelmed.

Before I go any further, I want to apologize for everyone who has been reading this blog for not letting you know sooner and for once again sinking into the morass of a long silence. There is no reason that makes any sense. I should have told you right away, even if most of you found out on Facebook or other means and ways from text messages to phone calls in which the information was shared. It was almost as if the miracle was too much to handle when it came to these words, and there was so much to say that I strangely or typically chose to say nothing. I am sorry.

The first thing I did when I heard was to call and text everyone close to me, letting them know what had happened. The love and celebratory responses I experienced took my breath away. When I went into the examination room to take off my clothes, get several vials of my blood taken once again, and have the remains of the rash and everything else examined, I was surprised by what happened next. 

Chris came in with my files and he was overflowing with happiness and joy. Although they ran both Hepatitis C and HIV clinical trials in the office, Chris told me that they had never seen someone go through such extreme side effects and not stop treatment and resign from a trial. He described as the most courageous (sometimes I think the most stupid, even being healed) patient they had ever seen, and he was so happy that the result of the trials had been successful. I was 90 to 95% certain of being cured of Hepatitis C, although my blod would have to be taken once a month for the next six months to guarantee the results. Still, I would take those odds in Vegas on any day. Chris actually told me that seeing me cured gave a sense of meaning to his work and this most recent of clinical trials for a drug that is never coming to market. Why? It has already been eclipsed.

A lot has happened in the past ten days, and I will be writing many blogs describing the strange and wonderful and surprisingly difficult experience of being cured. It is beautiful and lovely, but it is not all good and the minefields that have revealed themselves have been surprising. It is important for me to note two things now that will be described in detail later...

1. I stopped taking the drugs - the Ribavirin and the Interferon - five days before I found out my results. The sudden increase in disgusting side effects was crazy. Every time another one popped up, I would shake my head and say out loud, "Really? After all I have been through?" I knew I was cured on a holistic level that was intense and profound. I have never been so in touch with my body and I knew without question it was the right decision.
2. The first thing I did after leaving the doctor's office, after buying a bag of fresh jacima, coconut, and pineapple with a touch of chile and lots of lemon from a Mexican fruit cart, was to call everyone who had helped me through the worst times of the clinical trials when the rash would not stop itching and the staph infection was screaming and it was hell on earth. What I did was express gratitude and thank them for being there for me. When you see someone you care about suffering on such an intense level, it is hard not to turn away.

My First Hepatitis Free Los Angeles Fruit Cart Experience

Day 51 Night - Surviving First Dose of Interferon, Ribavirin and Protease Inhibitor

Yesterday morning (September 15, 2011), I went to my doctor's office and took my first dose of the Hepatitis C medication. It was a process that evolved from being very scared to be a-okay with the reality of what is happening. I have to take three pills of the Ribavirin twice a day, two pills of the Protease Inhibitors once in the morning, and shoot myself up in the stomach with the Interferon, so to speak because it is really just a quick little injection, once a week. Except for the Ribavirin, the drugs are all kept in a cute little red medica bag in my refrigerator. Chris Rice,  the very cool nurse I wrote about, showed how to inject the drug by actually injecting himself with saline solution. I thought this was ultra-cool and going above and beyond what was necessary, but it totally eased my mind. Chris also took pictures of me taking the first dose of pills and here they are...

John Lavitt Smiles As He Takes The Inaugural Dose

John Lavitt Downs Those Pills With A Certain Gusto

Washing Down the Pills, John Lavitt Battles Hepatitis C

Yes, it is true that Chris offered to take pictures as I injected myself in the belly with the Interferon, but we forgot to do it until it was too late. Considering the size of my belly and the kid-friendly nature of this blog (right?!), I suppose this was all for the best. Maybe you'll see that gruesome moment, which is much more gruesome in theory than in practice, in the future. It is amazing that when you overcome your fears, rely on a little prayer and meditation, and side with your faith, you can walk through just about anything with a modicum of grace and dignity and even a touch of humor.

I actually spent most of yesterday at the Bourgeois Pig - my local coffee shop hang-out - working and writing blogs for my SEO clients. Although I could feel the side effects coming on, I fought them off as long as I could and focused on the work. I wrote, posted in WordPress and optimized two 500 word business blogs while posting and optimizing a third. It felt good to do my work and show up for my clients, not allowing the indulgent fears to rule the day.

From the beginning, my greatest fear is that I would react to this process alcoholically. Does that mean I was scared I would relapse and take a drink? No, not really, because taking a drink is like putting a gun to my head. It just never seems like a viable option that makes any sense. What I mean is that I would relapse on my character defects, becoming self-centered and indulgent, basically slipping into the morass of self-pity. I so easily can become a Couchaholic, and I do not want to give in to that instinct.

What was strange is that I felt the sickness and the side effects coming on like a storm within my body as I was working. I mean, I did not feel sick and, in fact, I felt downright healthy. My pulse was 76 and my blood pressure was 125 over 88. Basically, God forbid, I am kind of normal. Not in great shape, not in bad shape, but somewhere in between the two. What seemed so uncanny was this sensation of getting sick because I was poisoned. After first taking the Interferon, I could feel a poison in my body. Perhaps this was my overactive imagination, but I don't think that is the correct explanation. My body has always been ultra-sensitive to externals, and I could sense something dangerous concentrated in my body. As the Interferon spread out, the concentration was less noticeable, but still a sense of something foreign. An invasion by a poisonous force, and such an invasion affects the totality and balance of the whole.

The Lord Poison Within Invading My Body, Lurking, Waiting

Fine, you are right; the above picture is a little melodramatic, but it gives the sense of what I feel within without resorting to Invasion of the Body Snatchers or Naked Lunch imagery, which unquestionably will come later. I just can't leave well enough alone when it comes to Mugwumps or Donald Sutherland. Still, despite the cramps in my stomach and a lingering sense of exhaustion present, I will survive like Gloria Gaynor, and I will not allow the challenges and difficulties of this treatment to rule the day or rue the day or dominant the gift of this sacred and beautiful life. I have been given an opportunity, a shot at the redemption of being here and now and feeling just fine in my own skin, and I will not toss such a blessing aside on account of a little discomfort. No, I no longer am that careless of a human being.

Day 18 Night — Clinical Trials First Step: A Very Cool Nurse And Element Girl

Okay, as with everything in this hyper-intensified process, I perambulated today between deep spirituality and freaked-out crisis like a pinball doing the dance of life and death. My first meeting at the medical office buildings across from Olympia Medical Center for the clinical trials took place, and it was an overall positive with hints of lurking negatives. What is essential is not to fall into the either/or perspective and to understand that I am not dancing between darkness and light, good and evil, or life and death, but lingering in a vast amorphous landscape of grey. The grey offers no easy choices beyond murky fears and no quick solutions, but at least it reflects a certain truth in terms of the nature of reality and human life. There are very few mythic battles and transcendent confrontations. There are mythic hearts and transcendent laughter, and they do battle with the grim truth of everyday reality like the rest of us. Mind you, I have not forgotten that there is beauty and wonder everywhere if you look with clear eyes and open hands.

The Dream of the Mythic Battle Against Monstrous Evil

When I went into the clinical trials, I met Chris Rice, the RN who is the clinical manager of the project. Later, I will go into more details about the clinical trials, but there will be plenty of time for that in the future. Besides being incredibly positive and user-friendly (sounds like a massage with a happy ending) on the phone, Chris presented the details of the trials with precision and understandable specifics. When I went into the office today and Chris took all my medical data and history, we got along incredibly well. Since we are both huge comic book fans, it was wonderful to hear about how he is sharing Neil Gaiman's brilliant Sandman with his 15-year old daughter.

Neil Gaiman's Sandman - Facade (Death of Element Girl)

I have no kids and I have tons of comic books and baseball cards, and I always thought I would pass them down. Maybe I'll have a child in the future - being a man, the ticking clock moves a bit slower - but if I don't, I can always share them with my nephews and my niece. When Chris described watching his daughter read some of my favorite stories from Sandman, I must admit I was deeply moved by vicariously experiencing something I once dreamed of doing myself. In particular, there is one issue called Facade about the despair of the super heroine Element Girl, an eternal metamorpho created by Ra, the ancient Egyptian God of the Sun. Element Girl can change into any element at will and she is incredibly powerful, but she longs for the release of death. Since she naturally changes into any element to adapt to any situation, she does not know how to kill herself and end her overwhelming sense of being an alienated freak. She is surprised when she is unexpectedly visited by Death, one of the Endless.

Death Visits With Element Girl In Her Moment Of Despair

Element Girl is told by Death that all she has to do is ask Ra to release her from life. But how, she asks, do I find him? She is told that Ra is a Sun God so all she has to do is look into the sun and ask nicely. She walks over to the window as the dawn approaches and the sun is rising, asking Ra to free her from the burden of her powers. In a stirring moment, Ra releases her from the eternal battle and she dissipates into dust with her ashy smile blowing away on the breath of the wind. It would be wonderful to watch my child experience such a beautiful story that meant so much to me. But I feel no regret right now; only happiness that I was able to empathize so deeply with a real-life experience and story told. There is more to tell about the doctor and the looming lesion in my kidney and a questionable high five, but that shall come later because there are more days and nights coming for me. I have no desire to have Ra free me from the blessing of this life, and I shall fight to hang on with your help.