Showing posts with label blizzard of side effects. Show all posts
Showing posts with label blizzard of side effects. Show all posts

Sunday, January 29, 2012

Day 187 - Does My Suffering Experienced During HCV Treatment Side Effects Provide Freedom From The Ghosts Of Primal Wounds?

On day 187, I return to Spirit And Consequences and make the promise to write every other day from now on. If I write more, that is fine. But I will express myself even when exhausted. And I smile because how I doubt this promise will be kept. My inability to maintain discipline and keep my promises to myself are the indirect results of my primal wounds that haunt me each and every day

There is a question circling my soul over the past few days, a sense of wondering whether the freedom I feel occasionally and speak of often is real or just words. Yes, even if I take the time and the effort to transform theory into actual practice, even if I try to ingrain a shift in perspective by making it a habit, do I truly receive freedom from the ghosts of my primal wounds that have haunted me for so long?
An Essential Question - Is There One Primal Wound Or Many?
According to the lingo of pop psychology and popular novels, there is only one primal wound for each of us. I am sure they believe the primal wound is centered around the parents, fueled by the almost century-old atmosphere generated by Freud and his followers. I understand how the idea of a single primal wound can be used to express certain perspectives and ideas like, for example, in the excellent volume of the same name that illuminates the struggles of adopted children and their primal wound of abandonment. But I would disagree with the belief that there is a single primal wound. In my life, I have experienced many.

Whether a result of childhood experiences with my father or at school, at summer camp or on the streets of Manhattan, those primal wounds all came during the many phases of growing up. Even as a teenager, when psychiatrists would claim the rubric of my personality was fully designed and installed, primal wounds arose and continue to haunt me to this day. It is ironic how the painful memories are so much harder to let go of when compared to the cherished ones. Happy memories seem to pass into the framework of our lives, hopefully to be replaced by more happy memories. But the primal wounds that infect our actions and warp our behaviors are ghosts that continue to haunt us until they are confronted, and there is a reckoning, a understanding, and, ultimately, an acceptance.
Are You Haunted By The Ghostly Shadows Of Past Wounds And Trauma?
Why have I been haunted recently by the ghostly shadows of my past wounds? Honestly, I would rather not say. I have been addressing a deep pain that came from my childhood, focused not on my family, but on my experiences at school. Of course, I also am infected by family wounds, but those seem easier to address. I still speak and interact with my family, not in person, but over the phone on an almost weekly basis. I visit my parents and sisters about twice a year, and they have been supportive of me during the rough times I have been responsible for putting myself through as an adult. 

As a result, such family wounds, even scars, can be worked on in an active manner. The experiences are not shadows because there are reflections of them in reality. Some of the wounds never heal, but I am more aware of how they affect me. In contrast, the wounds of school and childhood experiences are gone with the wind. They cannot be encountered again except in the shadows of memory.

Without question, I would agree that family wounds are the deepest and the most primal. But they are often repeated, then accentuated and transformed outside of the context of the family, and such new wounds, although similar, can become primal as well. The definition of primal is essential, fundamental, relating to an early stage of evolutionary development. Such wounds are  not just reduced to the first, but also related to heightening the first. If they deeply affect a person's evolutionary development as a human being, as a responsible adult, I believe they are primal. 

Beyond an argument over the number and placement of primal wounds, the question for me is whether the suffering I experienced during my HCV treatment side effects will provide me with the freedom not to be haunted and infected by those the shadowy ghosts of those primal wounds? I do not have any interest of spending any more time living with ghosts and having my actions warped by the shadows of those primal wounds. Do we not deserve more than a taste of freedom? Can John Lavitt free himself from the slavery he has imposed upon himself by allowing the infection of his primal wounds to continue and warp the vessel of his life?
The Bondage Of Self And Freedom From Our Primal Wounds
The first part of the Third Step Prayer in Alcoholics Anonymous goes like this: 

God, I offer myself to Thee - 
to build with me 
and to do with me as Thou wilt. 
Relieve me of the bondage of self, 
that I may better do Thy will.

I have always loved and identified profoundly with relieve me of the bondage of self. How exhausting is the bondage of self, how banal and repetitive and obvious. After so many years, I am so tired of being my own worst enemy because my perception and my resulting actions have been warped by the primal wounds. I wish you the very best in your own ongoing battle and I ask myself: Can I find freedom from those shadowy ghosts? We shall see...





Tuesday, January 3, 2012

Night 145 - Innovations In Hepatitis C Treatment Definitely One Of The Major Medical And Financial Breakthroughs Of 011


Several other Protease Inhibitors are being developed as well, including the nightmare experience I had with the Protease Inhibitor by BI. Still, I believe I will be cured so it does work, and my side effects were more extreme than anyone else in the clinical trials. Lucky boy!
Drug Research Is Big Business: 4-6 Million HCV Infected Adults In The US

Overall, the innovation in the Hepatitis C treatment arena and thus the overall marketplace are nothing less than stunning. Within a few years, it looks like Interferon and Ribavirin will be removed from the treatment regimen, replaced by a Protease Inhibitor that covers all the bases. How great is that!

But let me be clear about my response to these incredible innovations. Despite the severity of my side effects, I am not bitter about my decision to enter the clinical trial and get treatment now. It was the right decision to make at the time, and my bad luck in regards to the side effects was just that - simple bad luck with no dark magic or evil curses. Hey, sometimes we roll the bones and we come up aces and sometimes we just crap out.

Such is life, and I choose to free myself from the burden of bitterness and regret. What's the point?! It's not like I was playing with loaded dice and got screwed. Sometimes the universe works for you and sometimes you work hard for the universe.
             I wish we had more control, but, as the French say, C'est La Vie!

If you choose to hold tight and carry the bitter weight of your regrets, do not ask why their no fluidity or rhythm to your life. What the hell do you expect when you are so overwhelmed by the horrors of the past that you sacrifice the freedom to live in the present.

Here is the article below about some of the new Hep C innovations:

2011 has brought patients with hepatitis C not one but two new groundbreaking medicines to treat the condition. Merck’s Victrelis (boceprevir) and Johnson & Johnson/Vertex’s Incivek (telaprevir) were both launched in the US in May. 
The drugs are both oral protease inhibitors, and promise to significantly improve treatment when added to the current standard treatments for the disease. An estimated 270-300 million people throughout the world have the disease.
Analysts predict Incivek will prevail because it has shown a higher cure rate, and a simpler and faster simpler dosing regimen. But Vertex, which has never launched a drug before, will have to overcome the might of Merck and its new US marketing partner Roche. 
Vertex’s belief in the superiority of its product is reflected in its price, which is $49,200 for a 12-week course. This cost is much higher than Victrelis, and is equivalent to the price of a whole 48-week treatment with Merck’s drug. 
Incivek has had the best start, earning $420 million between May to October, while the same period saw Victrelis earn a more modest $31 million.



Wednesday, December 28, 2011

Night 136 - Long Silence As Ennui Sets In + The Side Effects Added To Warning Label Of Peg Interferon - Depression and Suicidal Ideation

I know I have been silent for almost ten days which is the longest gap since I started treatment. It is strange because you would think I would have been silent during he nightmare and living hell of the constant itch and pain of the rash and staph infection. But the blog was my life preserver during that six weeks of hell, and it provided me with a sense of value and faith. Now things have shifted as I slowly recover from the trauma while remaining on the Interferon and the Ribavirin. 
Although I See The Way Out, I Remain In The Dark Tunnel At Essence

Although I see the light at the end of the tunnel I am still in the tunnel, still nursing my wounds, and, in the stillness of the cold night, facing the weight of the consequences. I have shifted into the doldrums of ennui as my burned-out body sags to the floor, and I fall on the couch and surrender to the banality of just being uncomfortable. Mind you, being consistently uncomfortable 24-7 is so much better than being in the thick of hell on earth. I am grateful, but being out of the flames and the fire, you begin to register the price and the traumatic effects of the wounds and damage. It is a bit overwhelming as I give in to being a couchaholic once again and find refuge in the arms of my old brown leather couch.

At the same time, I am writing beautiful poetry, and I shall publish a few newly rewritten and completely revised poems in the next blog. Right now, I am healing from the most extreme trauma of my life, and I must be gentle with myself. It is hard and brutal at times, and I must realize the toll taken in terms of the extremity of my survival. Yes, I survived and even did well in the face of a such a living nightmare, but there was damage and there was a lasting price. Although the long-term consequences have turned out to be both negative and positive, I must recognize that the negative cannot be ignored and must be treated with the respect of the price and the necessity of healing and recovering slowly.

Finally, I am still on the Ribavirin and Peg Interferon for another 2.5 months. The traditional side effects of these two drugs is what you always heard about when people mentioned how awful and difficult the process of going through Hepatitis C treatment. The worst side effects I experienced was due to the new Protease Inhibitor, but I am in a clinical trial, the drug is completely new, and my side effects won the gold medal for the worst in the entire country, if not, the entire world of clinical trials. Nevertheless, the side effects of the other two drugs continues to be a challenge.
The Ribavirin and Peg Inteferon Side Effects Continue To Be A Challenge

Here is a recent article about side effects officially added to the Interferon warning label:


FDA Hepatitis Update - Important Updates to PegIntron Warning Labeling


On December 22, 2011, the Food and Drug Administration approved revisions to the product labeling for PegIntron to include the use of PegIntron with hepatitis C virus (HCV) NS3/4A protease inhibitors for the treatment of genotype 1, chronic hepatitis C (CHC) infection. Additionally, the product labeling was update to include revisions to the text regarding the use of PegIntron in patients with neuropsychiatric disorders. Changes were made to the Medication Guide for consistency. The following changes were made to the warning and precaution sections of the product labeling.

Warning and Precaution section was revised as follows:

Neuropsychiatric Events

Life-threatening or fatal neuropsychiatric events, including suicide, suicidal and homicidal ideation, depression, relapse of drug addiction/overdose, and aggressive behavior sometimes directed towards others have occurred in patients with and without a previous psychiatric disorder during PegIntron treatment and follow-up. Psychoses, hallucinations, bipolar disorders, and mania have been observed in patients treated with interferon alpha.
PegIntron should be used with caution in patients with a history of psychiatric disorders. Treatment with interferons may be associated with exacerbated symptoms of psychiatric disorders in patients with co-occurring psychiatric and substance use disorders. If treatment with interferons is initiated in patients with prior history or existence of psychiatric condition or with a history of substance use disorders, treatment considerations should include the need for drug screening and periodic health evaluation, including psychiatric symptom monitoring. Early intervention for re-emergence or development of neuropsychiatric symptoms and substance use is recommended.

Patients should be advised to report immediately any symptoms of depression or suicidal ideation to their prescribing physicians. Physicians should monitor all patients for evidence of depression and other psychiatric symptoms. If patients develop psychiatric problems, including clinical depression, it is recommended that the patients be carefully monitored during treatment and in the 6-month follow-up period. If psychiatric symptoms persist or worsen, or suicidal ideation or aggressive behavior towards others is identified, it is recommended that treatment with PegIntron be discontinued, and the patient followed, with psychiatric intervention as appropriate. In severe cases, PegIntron should be stopped immediately and psychiatric intervention instituted. Cases of encephalopathy have been observed in some patients, usually elderly, treated at higher doses of PegIntron.

Richard Klein
Office of Special Health Issues
Food and Drug Administration

Kimberly Struble
Division of Antiviral Drug Products
Food and Drug Administration

Monday, November 21, 2011

Yippie Ki-Yay! John Lavitt Wins The Gold Medal For The Worst Side Effects In The Country!

For some odd reason, it is far from reassuring when your doctor informs you that your side effects are not only the worst in Los Angeles, but truly the worst seen in all the medical trials for this new drug across the entire country. With 17 days left before so much is revealed and the computer unmasks the dosage and the viral load numbers, I truly wonder if I can make it. I have come this far and stopping would be absurd.

But is it insane to continue when my body is screaming all day long, reverberating back and forth between the wailing itch and howling pain? Yes, as the rash has torn up my body and desecrated my skin, I have wounds and scratches, sores and scabs all over my legs and arms and now my butt. But I am the gold medal winner, although it's an evil award that no person deserves and that I must endure.

I feel guilty whenever I am around my friends and acquaintances because almost all of them know what is happening and they always ask how I am doing. It is a kind question that is meant as a true sign of worry and support, but it is maddening as well. Why? Because I feel like all I do is complain and bitch about the extremity of what I am experiencing, and I can only imagine how tiring that must be to hear day in and day out.

I was forced to stop typing for a moment because my left thigh was wailing with an itch that is so deep and so insistent and almost impossible to address. When I scratch, I make it worse, right, but how am I supposed to not scratch when it itches constantly and none of the medications work, none of the creams do anything beyond momentary relief. I have used so much cream and ointment and crap on my skin that it is peeling in several places and as dry as a bone. These side effects are simply insane.

Forgive me, my friends, but I cannot continue and I am losing my ability to put words together in a clear fashion. May I sleep soundly tonight and may tomorrow be a better day.

Monday, November 14, 2011

A Birthday Blog: How These Trials, All The Itching And All The Pain, Have Shown Me The Beauty And Wonder Of Being Alive

Right now, on November 14, 2011, on my 45th birthday, as I write this blog, my right thigh is itching out of control. I am exhausted as usual and the acid indigestion just won't go home, but all I can think and imagine is how beautiful and wonderful is this rare gift of a human birth. Yes, these clinical trials to ride me of Hepatitis C truly suck! My doctors have told me that my side effects are the worst they have seen in the clinical trials so far. But I continue to endure even as my body is under siege with the rash perambulating back and forth between a poison ivy-like itch and a bad sunburn-like pain and sandpaper tautness. But when you have been so reduced, when even a half hour of relief and comfort seems a blessing, there is nothing left to do but surrender all of your bullshit and all of your delusions. I am living and surviving at the core of my being, and what I find there is a true sense of value and beauty, wonder and gratitude. What I find there is a light.
At the core of John Lavitt, there is a beacon that shines beyond the darkness as I realize how lucky I am to be alive. I put myself through literal hell in the past, hurting the ones I love through the extreme indulgence of my drug addiction, through a car crash and brain damage that should have left me a shell of myself as a creative entity, and through the everyday selfishness generated by fear. At this very moment, however, as I write this and do my best to ignore the cramping in my lower back and the nausea rising that has nothing to do with Jean-Paul Sartre's classic, I know that I am sober and that I am a decent man and that I am loved. What more could a human being need to have to be happy?

On this birthday, I make the conscious choice to believe in the inherent goodness of human beings and to have faith that I will continue to be loved and taken care of by the universe. After all, I am a working part of the whole and a pretty damn good part of the divine machine if I say so myself. And I guess I am doing that right now. There is such beauty in being able to feel gratitude in the midst of these physical challenges. I know one day soon they will come to an end, and I am so grateful that I will be able to return to the everyday roller-coaster of just trying to get by and live my life.

I love the birthday picture below of Linda Carter as Wonder Woman, and I figure it makes sense these days to embrace the possibility of superheroes. Yes, I am often a flawed and petty little creature, but, despite all these defects of character, when challenged I actually seem to rise above the drowning tides by focusing on staying afloat with a smile. Can you imagine how much this physical affliction has taught me about what I truly value and what is meaningful to me? What a lovely wonder it is to be able to toss aside the crap because I do not have the strength to do anything other than hold tight to the beauty and the love.
Linda Carter: The Only Wonder Woman For Me!
It's funny because in my apartment I have a limited edition Wonder Woman snow globe in which her silver bracers are raised in battle to block the bullets of the bad guys. (Wow! How is that for a little aliteration? It always makes me smile when the poetry just pops out without any explanation.) Although I love the snow globe, I have planned since I first bought it  to give it as a symbol of my belief in and my respect of the woman who will be my partner in this life. Despite this rash and those scars, I truly have faith that I will one day be with this woman and that she will be with me. After all, isn't the ultimate gift in human life the ability to love?

On my birthday, this is my wish — to love and be loved. Maybe not tomorrow and maybe not next year, and there is no time line, but I take a deep breath and I go on waiting. I shall continue to wait and to experience my own authenticity and to do my best in the eye of the storm. Because I know that I must find the strength to continue waiting for a little while. If that is what is asked of me. If that is what is asked. Because I will never surrender my faith in the possibility of love. Yes, I have that faith and it consoles my soul as I stumble through this blizzard of side effects and become healthy again.