Solvali and Olysio: New Trial Treatment Drugs

I am on treatment again, i have just a bit more than four weeks to go. Its a 12 week treatment program. About half way thru, it hit me hard. I started out strong, determined, ready to take on anything. I had just survived a major bleed out. I developed bleeding varices in my throat. This happens to us as the disease progresses. Most likely they had been bleeding slowly for awhile. I had refused an Endoscopy so it could be determined whether I had them or not. I had refused to go back onto treatment. My near death experience changed all of that, I could suddenly see it was my only shot in the dark. I survived the bleed out, it was the most humbling experience of my life as I was alone and extremely ill with what looked like the most horrific case of mouth Thrush anyone could ever imagine seeing. It was 2 a.m. I woke up feeling like I had to throw up but I was so weak I could not get out of bed, I recall thinking I would have to just lie there and puke on my bed, I was that ill and weak. Then I was throwing up, I was projectile

vomiting. I could not see anything because I sleep with all the lights out, i am still not quite sure when or how I realized I was projectile vomiting blood. I was simply locked into something I had no measure of control over. All I could do was throw my head to the left so I did not choke on the blood, I was lying on my back. I thought I was on the bed but as the vomiting subsided a bit, I felt around, I wanted to get up and get cleaned up. My hair was full of something sticky and thick, I smelled blood. Then I realized I was not on my bed, I was on the floor. I did not think about it then because all I could think about was that I might die and die with all this sticky mass on me that reeked of blood. There must have been a bit of dim light coming through the guest bedroom window because I began to see dark splatters of something on my white walls. I made it into the hallway. This is a tiny house, all the rooms are extremely close. In the hallway my body began to contort, it was drawing up rigidly, I had to press my arms and legs against the door frames and push as hard as I could to extend them in an effort to ,stop the gnarling up. I knew if the gnarling hit my organs in my trunk my liver would begin to contract. I almost bled to death years earlier from a biopsy of my liver but the contractions finally stopped before the bleeding began but they were ready to push me into surgery to try to get the liver to stop contracting. There in the hallway, I began the projectile vomiting of blood again and I was in so much pain that had no ebb to it that I accepted that my life did seem to be over, at first it frightened me but my Buddhist teaching immediately reminded me if I had any chance at all it was in letting go and not resisting, it was in giving up fear and going on this hellish ride with the gnarling and vomiting. So I chose that path as sad as it was. I thought of my precious life, my two children, my husband and I realized my friends would never forget me, I was deeply loved, I would be always sorely missed. Yes I hoped to live but I did not cling to it. Oddly enough I then began to connect with the dying experiences of the dogs I had loved that had died, one in the 90’s, the other in 2011. That was humbling indeed to be reduced to just simply a living creature like them, I felt their lives leaving them and it was sad beyond belief but it also comforted me. The gnarling and bleeding stopped. I thought maybe just maybe I will live so I began again to try to make it to the shower to clean myself up. Now I was even more covered in vomit and blood and I did not want to be found like that. I thought of calling 911 but I wanted to get clean, I wanted to see if I might live long enough for my son to fly over from Maui to my island. I got he bathroom light on and the shower on but within seconds I knew to try to shut the water off but I did not know if I was strong enough but I managed such a simple thing then suddenly fell forward, I was headed for the floor but I went into my cycling discipline and as I lunged forward, I struck hard and steady with both hands one onto each knee and braced myself in a sim stand like half squatting position. It was the last physical effort, probably the only one I had but I held myself up and watched in horror as my gut pumped up huge amounts of vomit and blood that sprayed my bathroom walls, covered the bathroom floor. For less than a second I felt repulsion then again my Buddhist teaching told me do not be repulsed by yourself so I thought, this is like a film I am watching but I am the only witness and the only actor, I can do this, I am not being murdered, I am projectile vomiting blood, I have seen such many times watching Netflix films, I can and will watch this. Finally it was over, I was still alive, I had lived through 3 different episodes of projectile vomiting blood, I wrapped a towel around my head, I had to wear the mat of blood hair full of a mass of horrible thickness and stench. I knew I was not calling 911, I knew I did not want any commotion over me, I wanted quiet, I wanted stillness, I wanted to call my children and my husband. First I got my i pad not knowing if I could do it or not and went into Facebook to message my son to come now on the first flight he could get, he did not have a phone. My daughter was on the mainland, I had to tell her by leaving a message then I phoned my husband to tell him come immediately. I decided to call my mother but I almost did not, she said call 911 and I said this is my life and my death and my choice and I am not calling them. I just wanted to be in my bed waiting to see if I could live long enough for Silas to arrive from Maui. I knew if he came I could make it so I took my chances.

I only have 4 weeks and 2 days left until my treatment is finished. I am worn thin now. I am curious how much of the old self I can restore once I am able to be off these drugs and back into light. I long to swim under a deep blue sunny sky. I long to find out how many hours I can stand spinning hoops on the beach facing the Pacific propelled forward by my connection to its force and beauty. I long to cycle the east shore highway to find out if I am still capable of my 25 mile trek. I want all of my passions back. I know that my disease us taking a greater toll on my organs every year. Still I long to force myself back into the days of joy from standing in the hot sun spinning hoops non stop for four hours. I am hungry for life. I have spent 8 weeks on the side lines doing this treatment, yes I spin hoops in the dark, I cycled in the dark but its simply not the same experience. I have been too isolated. I have missed my audience I perform for, they do not realize it but they are greatly responsible for my determination to live as fully as I can push myself into. I long for any human connection. It was what kept me trying so damn hard despite my age, despite the degree of cirrhosis I have and the multitudes that feed on my liver. No one can see me in the shadows, I’ve been excessively lonely. I have kept all that feeling to myself. My hibernation has been the price of trying once again to destroy this virus. If I have done this much, I will, I should be able to live longer, if not then the virus will range thru me, a wild fire that cannot yet be extinguished. I am more brave for having done this treatment, more focused, far more serious and intent about the person I have honed myself into over these last 10 years. Nothing can ever take that from me, its my wealth. I am counting days now, I feel the nearness of the ending of this journey on Solvaldi and Olysio.

July 7, 2014 Sunday night
I’ve been in the garden with my dog and my hoops getting my Mo Jo on, jeez hooping restores sexual energy, its all the bouncing of the hips, the slip, the slide, the up, the down, the swing, the sway, the spin, the run of the hoops circling the body from neck to near ankles, the rips torn from the body and spun out into the air, the whipping of the hoops around the body in mad thrusting twists, right, left, body thrown backwards facing the moon, body bowed forward nearly kissing the earth. Its the insanely sexy music my i pod is chock full of pumping into my ears. I am feeling Mo, I am feeling Jo, I am wanting Mo and Jo, my mind races with sexual energy, my ass bounces like a basket ball. Shameless totally but one thing a woman never wants to lose as she ages is this feeling, this feeling above all feelings. Without it, life flattens out. I want my life round, full and juicy like fields of melons, orchards of peaches. Tomorrow I cycle, when I cycle I am Mo and I am Jo. I feel my male energy and its seductive beyond belief, I am a power horse, nothing feels better than being a woman, looking like a woman, hunched forward riding in the drops with my ass in the air but riding with the fierce power of a man, it feels the most tripy image imaginable. The joy it pumps into my being is beyond anything I have ever taken on. I suppose I am drawn to abandon, transcendence, fantasy, the feeling of ever lasting youth I constantly seek. I will return, the treatment has only four weeks left then one spin in the hoops or on my race bike at a time and I will be the gal I had to abandon to try once again to kill this virus. Why not try, I cannot think of anything better to do than to live passionately. I gave my entire youth to children and men, now I take what I want for myself. Isn’t this what men spend all of their lives doing? I have become selfish but the crowd roars to see how much I will take before this ride is over with…as long as vanity contains an equal measure of humility, I see no problem…

July 7, 2014

Time flies when you have ESLD and Hepatitis C. I did get a dose of humility today. I was called and told by doctor’s Case Worker that I have a lesion on my liver. Now they want an MRI and what will they want after that? In March, I was cycling again and feeling that maybe this summer I would reach my goal of a 50 mile trek along the East Shore only to be slapped down by a mouth infection then a black out bleed out then two blood transfusions and two endoscopies along with 2 banded varices that caused the bleeding or were connected to it, honestly that was a hell of a massive amount of blood for two small bleeding varices but then I do not clot blood very well, once bleeding starts, my inability to clot blood is not there to much of any degree so its easy to start bleeding then not stop. I sure do not feel savvy sexy today, not in the least but I did wash my hair, bathe and dress nicely. Odd how my mind works: my thinking was “i need to keep looking nice just in case I go down, bleed out, pass out, have to be hauled off by an ambulance. Which reminds me, I need to pack a bag for the hospital, just in case. Last time, I had nothing, no tooth brush, hair brush, panties, handkerchiefs, none of my things except my i phone and insurance cards. I have entered the neither world, neither here nor there. I am living in Limbo. I knew one day this would be my station in my life and appears I have landed. I am not surprised. Its not the position I was in hopes of, I was ready to cycle hard, hoop beyond anyone’s belief just as I was doing a year ago. I feel now that life is beyond me. I was kidding myself thinking I would make it that far back but at least I had it for four years. Now I get to swallow more poison for four more weeks, poison that may be responsible for this lesion but thats impossible to determine. Now the determination that will be made is whether this is a cancerous tumor and if so what can be done about it. I am along for a ride I cannot get out of, I am not sure how far down this road I want to journey but I will go aways, see what is up the road then decide which fork to take, I will have to choose.

July 29, 2014

I have less than a week left, six more days and I am finished. I feel almost finished entirely. These last weeks have been nightmarish. I am exhausted. I finally quit sleeping four weeks or so ago. That raised my Cortisol levels and caused me to gain 8 pounds, I became depressed to make the situation even harder. I finally asked my husband to return to help me and for 3 weeks, I have been dragging myself off to the bay to swim and hoop. I can’t be in the sun long but I am managing without any negative consequences. I hoop only 30 minute stretches, sometimes an hour still but I am not cycling. I am not sleeping and I now have an annoying physical tension that is in my entire being unless its the first few hours of morning before I begin my meds. Next Tuesday, I have a lot of back peddling to do, I have lost a great deal of my drive and my zest and its heartbreaking for me to feel this, somehow I have to pull myself all the way back up into 8 hours of physical discipline a week! Now that my momentum slackened on treatment, I have a clear image of the efforts of my labor, driven by will power and the sheer determination to live well. Jeez to begin all over again! But it appears the virus is undetectable, ah if it can stay that way! Its time for the bay and the push to swim and hoop…

br />