Olysio/solvaldi

I finished the treatment, half way thru an MRI to detect cancer was requested. They cannot biopsy so they cannot know for sure but they say cancer. A biopsy could and most likely would cause a bleed out, it would spread the cancer if it is cancer. They want to lazier burn it but it could cause me to bleed out again, it could easily go wrong since I am a hard mass of cirrhosis inside my liver. My doctor is furious because I will not do the lazier burn, I have almost bled to death twice now. The burn will not cure the cancer they believe is there. I need a transplant so the cancer in my liver is gone, its the only way. Transplants are like miracles, they happen only for a few especially on this island, ten a year. This is an Asian island, I am not Asian but English and Cherokee and my matching liver has to be my size and my blood type, it has to be someone on the islands, the mainland is too far.

I have picked myself up alone. I am exercising 7 to 9 hours a week. I am eating only health food and I have given up sugar. I rest lots. I am almost always alone. I have done it though. I started the first of August as soon as I finished the poison that killed the virus and maybe created a cancerous tumor. Its possible but it cannot be proven but then I look for no proof.

Much to my surprise almost every friend I had moved back many paces emotionally and physically. I have accepted this as their right. Life goes on for them. Life goes on for me. I think somehow I had a fairy tale notion of people stepping up and telling me in someway how much I meant to them. A few have. What I learned is they might as well be millions, being loved by a few is rich.

Still, I propel myself forward into the unknown present. It appears to me the future is known, its certain. But that truth exists for everyone. Its just that the doctors handed me a verdict, they posted signs, sounded the alarms and they have an agenda they believe in even if I don’t. My present is chock full of beauty: ocean, island breeze, roaring surf, a garden filled with doves lots of living phenomena.

I do not feel weaker, I feel stronger. I feel more alive than I have. I feel as alive as I ever have. My focus is sharper. Reality is clear. The veils are lifted…

I am living in a state of awe.

December 5, 2014

I had an audience on the beach yesterday while hoop dancing. The beach here is almost always empty, neighbors come and go, there are a few tourist now and then but its the opposite of the circus of characters where I lived on Sunset Beach which is only one surf break along the seven mile miracle as its called.

I hoop now for myself, I am not sure what I would do without hoop dancing to music under the sun, moon, stars, under the Papaya trees in the garden. Spinning in the color, the order, the beauty of butterflies and doves is saving me from one day to the next. I seem to have given up on almost everyone and everything except my spinning.

I know so well how quickly my happiness can be ripped from me. I know how suddenly it happens. I’ve turned deeply in on myself. I was thrilled and honored to woo my audience in the distance down the beach from me but I quickly found myself turning away from them and into my own world.

I hoop for clouds and their patterns, their motion against the most perfect blue sky. I am a freak now, its the clouds I long to kiss, that shade of blue I would die to be embraced in. The warmth of the sun ‘s touch on my near naked body is the embodiment of my most perfect lover’s hands.

If that one little tumor is cancer, if it is growing, I cannot feel it. If its holding steady, I cannot feel that. If its not cancer and their guess is wrong, I cannot feel that either.

I turn 63 on Saturday, I feel that. I feel the full moon over my garden and wooded shore. I feel every happy day I have ever know in my life. Its as if I am 22 and have begun again. I feel the joy I knew in every age I have been. It was my goal to be rich in memory by this age and I am. I have been so well loved in life that I can only dare hope those who gave me love feel thats what they too had from our meeting in life, forever how long or however brief.

I am hoop dancing eight and ten hours a week now. I am a one woman Pony act…

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Solvali and Olysio: New Trial Treatment Drugs

Living With Hepatitis C

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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…

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Solvali and Olysio: New Trial Treatment Drugs

20140705-220510-79510176.jpg

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

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Transitions in my Hepatitis C Journey

AmeliaT7

I lived in NYC in 2003 when I was told I had Hep C. I was a menopausal woman and felt something was wrong other than menopause. I was also a fierce drinker and felt something was wrong other than the recovery of any hangovers or day drinking I had ever known in my life as a drinking woman. So I had a doctor’s visit. In NYC, they see everything, the doctors there are on it to find out what is going on. I had an elevated liver profile but I’d had one for years but this doctor got curious, he tested to see what things I might have that could be causing it and bingo there was my life flashing back to 1972 when I was a heroin user for 9 months of my life and no doubt contracted Hep C that way. I simply told him when he gave me the news that I was sure where and when I had contracted it, nothing to do but suck it up and move forward but moving forward meant giving up the life I had in NYC, I”d made a life for myself there, I was in the middle of settling into it, I had only moved there in 2001 but had been hand coloring photographs for a photography business for a few years and had worked hard to make this transition to moving there. I had become a member and part of The Exhibition Committee for one of the best and longest standing groups of photographers in the city, “The Camera Club of NY.”

There was a lot of sacrifice, I had to make life changing decisions that affected my entire family and mostly no one understood how a woman could take off and follow her own dreams once her family was fully intact and functioning on its on well without her, they all grew up, it was my turn, I’d been mother bird for almost a life time, I wanted something else now; so I faced the odds and moved.

It took me a year to go onto treatment and in the end I did it because everyone wanted me to at least try it, almost everyone, my acupuncturist sure did not and later I found out why exactly, but later it was too late, the treatment did not work, a year of chemo drugs and interferon and I was still loaded to the gills with the virus tearing away at my liver but now I had nerve damage from the treatment drugs.  I was only able to get about with a cane. Two years passed and I was still getting about the streets of NYC with that cane. I was angry. Its a hard city even for a strong healthy person but I loved the city, I loved New Yorkers, I loved the life I’d made there, I had never intended to leave but I had to.

So I spent almost half a year in Australia on a sheep farm near Melbourne and got a lot of thinking done, part of that journey there was bliss and beauty, the other was anger and disappointment as I was not well and no one understood how weak I was. The strong never want to appear weak so we seldom do and when we do at times there is a judgment placed on us that maybe just maybe we are faking it for some reason. I still live with that judgment because today I look ever stronger than I ever have. My Hepatitis C has caused that.

I began after moving here to fight to live well, it was hard to figure out alone and it took a lot of heartache to understand that truly people did not understand what they could not see and I let them go and pushed myself to the top of my list and learned to live in isolation and to seek out company in the post office, grocery stories, shops, streets and on the beach. That is where I began to have my affiliation needs met and this continues to be true.

My journey with my Hep C began on this island after leaving Australia returning to NYC to admit I was not meant to be there any longer and to move to this island of Oahu where I can live in the peace and quiet in the rural countryside of the north shore of the island. In 2008, when I moved here, I was not strong enough to get into the ocean alone, I could not even ride a bike, I could walk and I could dance so I began to do that as practice and I began to experience results that led me to hanging a trapeze and swinging from it for about 7 hours a week as a discipline, I would wake up and walk out onto my deck on Pupukea that was on the edge of the cliff and over looked Waimea Bay up to Keiki Beach and I’d grab that bar and swing for an hour or two like mad, doing that I was able to give up one medication at a time, I came on five medications, anxiety meds, anti depressants, two blood pressure meds. Then I took up throwing a lasso and I became even stronger, after that I got onto Poi Balls and boy did they turn me around, they put me on the beach in front of the surf and I used the force of the surf’s spirit to connect to. From there I”ve graduated to Hoop Dancing and I do this for 7 to 14 hours a week, I have a lot of recovery exercises to keep up with due to the pain in my hands, arms, legs and feet but my god what muscles I have developed to hold me up, yes I am all over the ocean now, I respect it but I sure push myself into its fierceness just so I can absorb its energy. Then I took up cycling, really cycling, I have now both a mountain bike and a race bike and yes I can ride distances, I love how hard it is, I get off on it, of course I do, if I am not engaged in these activities then I am lethargic and sluggish, depressed, my body hurts, my blood barely circulates and my access to oxygen is limited, only endurance exercise makes me feel like I am a fully functioning human being so yes I have fallen in love with all of my disciplines, I live for them because in turn they keep me alive and thinking clearly about how to continue to manage and be strong in my body as well as in my spirit, its the worst possible scenario to let one’s spirit fall down when one is this ill, it destroys ones love for life and for fellow human beings and I want to belong, I don’t want to be separate so I look kind of jock like with my 6 pack abs and arms with long bulging veins in my arms from endurance exercise but that’s okay I don’t have to be a femme fatale I just have to live well.Hooping

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