The Cancer Center


I want my goddamned freedom back. I worked so hard to have it ripped from me by layering me with liver cancer in multiple organs. I was still fighting once my Hep C treatment was finshed; virus null and dead but my reward was an encapsulated liver tumor. So I forced myself upright and back onto the battle ground. I was not letting anyone near those tumors, I never wanted the Hep C trial drugs I agreeded to take. I should have turned my face away from the wall of medical professionals wanting to treat me. As I entered The Cancer Center last week for the first time, I felt in my gut ” this is where they strip me of being the human I am, this is where they suck every last particle of uniqueness from me and make me no one nobody but another cancer patient. Enter the puppy mill if you will. Here you will be eaten alive very slowly. 

 I entered out of a sense of curiosity and I had promised a new Oncologist that I would see the lung cancer doctor. I took one look at him in the hallway outside my waiting room and he looked at me and I felt him mentally drooling over me. Nope he is never touching me. But he did touch  me when he had me climb on the table bed so he could listen to my lungs. He was old like me, 60 something and when I mounted the table in one fell swoop, on one foot and leg only, he made damn sure his hand was firmly on my ass as I dismounted the table. He was not helping me, he was dying to feel how hard this old lady’s ass is. Ah the white male medical professionals. 

 All in all, he was afraid to cut into my lungs because under anesthesia I can easily die, just overdose and never wake again, its diffuclt with a liver as sensitive as mine to determine the amount of sedation. He was on the side of needle guided biopsy which the Oncoligist thought would not get enough of the mass to even determine if it is liver cancer in my lungs. I had a liver biopsy and almost bled to death, it was two nights in Intensive Care back in 2003.

 In that tiny examine room with the doctor and my husband all I felt was; this is not for me. I am finished here. If I ever do return, it will be because I am in so much pain, there is no other choice. But I have yet to really experience liver or lung pain. Yes I have coughed up a bit of blood but nothing to worry with, I have projectiled vommited blood and blacked out doing it. Nothing like the problems I would create by first letting The Cancer Center fill my lungs and system with chemo then fill with liver with radiation, Yitruim -90. Then miracuously the lung cancer disappears, the liver tumor is shrunk to 4 cm a bingo, I am put on the transplant list. Right, Bingo…

I see a woman beaten completely beaten down by chemicals, a shell of myself buckling under the weight of my shoulders.

If you can still stand under the stress of having everything strength in your body robbed from you because you have been filled with toxic chemicals, where is the life in all this? What part would belong to me? 

No one turns their back on treatment, these doctors have no scenario for what happens when its left alone. No one keeps those stats. Why would they? Yes, its professionals trying to save lives with chemo,  radiation and transplants but that is their only job. They have no other job that will put food on their tables. They are only into treatment. Its their job to save lives and they do but I am a reasonable woman, I laid all my cards on the table, I read them. I fold. I am out of this game. I am back to plan A, just live for as long as I can. Just get up again. There is no rush, you have all the time in the world. 

But the ground feels not under my feet and I keep staring off into the clouds. There is a 5 pound Kettle Ball in my gut all day and night every day and night now. Its the only pain I know. It limits my ability to ride and hoop. Its difficult to hide it much less cycle or hoop with its weight and discomfort at the foreground of every thought. Just goddamn disappear please. It may cause more fatigue than the liver cancer or cancer in my lungs. At this point, everything gets mixed up, there is no definition, I am not fixed here, I feel myself drifting further away from life. I have lost my grip, I am unengaged with nothing to hold onto. I am trying for a new landing, if I get it then it comes with a new runway to start over and try taking off again.

I really long to begin again, where is my sexy, where is my badass, why can’t I fly?

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Hell Bent for living

I stay busy living or figuring out how to get back to it. I will hoop dance and cycle thru lots of misery if I can just get up. Inertia is depression for me. Five years ago I could hoop dance 5 hours non stop on the beach in hot sun. I ate bananas and drank water with hoops spinning around my waist. I love life. I love the rushes in my brain from living it. I feel like an electrical current and I work hard to feel that spark turn into a blaze in my brain and spirit. I am an endorphin junkie. But its five years later. Now I can manage 5 hours a week of hooping  but no longer than 2 hours back to back. For that I never know what price I will pay. I may be laid flat for a week for doing it or if lucky I will get up again the next day to cycle or hoop. Now and then I can go thru that strong cycle an entire week but its going to flatten me. The lights will go off and the curtain will drop and its misery in this bed. I never know how long I will be pinned down with the hands of fatigue around my spirit. I detest those hands and I struggle and fight my way out of their choke hold. 
Cancer is a mean old bitch. Now I have two of those bitches on me. Thats a bit too much to fight but I do. One sister owns my liver while her sister owns my lungs. I get to fight for what I get from them now. We hiss and claw at each other. Sometimes the show is entirely theirs but I can still steal the stage they stole from me. They possess no love, no tolerance, no forgivness and when I get the stage, I worship the sun, the moon, the stars. I long for the clouds. I long to drift as they do sometimes so gentle, so beneviolent, so blue above me, so far above me. I hope when I die I become like them. I do not belong with death, I belong with life. I belong to hope. I belong to the future of longing and loving. I belong with butterflies and Ewa birds. Cancer can fell my body but not my spirit, thats not possible. It has always been here. Its going nowhere, its the only thing I know for sure but I will miss my life here, I will miss feeling and loving who I am, who I choose to become. Not everyone takes that choice as seriously as I did over and over. I am lucky.i have drank from the well of love deeply and I have paid its price, its not bitter, it can be bittersweet but in hindsite I am glad I suffered before suffering, there is so much sweet joy. 
So as I now watch it all fall away from me like meat from a bone, it all seems so beautiful, every friend, every lover, every and anything that moved thru life in all meaures of of varying currents. The sweetest thing in life is love, add some music, some stars or blue sky, a little moon light and I am drunk on its nectar. I never want to stop. I never want to come down for a landing. I must be forced either by my own greedy lovely hands or by something cruel and wicked that needed to take me as its host so it could feed from my life to have one of its own. I would slay them if there was a way but sooner or later we must all acknowledge that we had our turn, take a bow, enjoy and embrace that last bit of applause and if possible smile, close our eyes forever and give up our own creation of ourself. Everyday I wonder if its my last performance. Fuck, I just got great at living andnow I must go. I hope its with the clouds. I am sure its not alone. As long as I remember you, I am not alone then when I must forget I do not fear the winds or the silences that will overcome me.

I was here, I got to live. I know love, I know life, like I know the eyes looking back at me in the mirrors of my entire life. Thats rich. I will always want more but I cannot die without having had more than enough of everything. Life is an exqusite affair…

  

Just Breathe

This image is called: “Gone Crazy. Riding.  out of the bed again”
Every second of my life has become about surviving. I feel not just the life racing thru my being, I feel my death in competition riding neck in neck in a race against each other; both equally determined. I  ride the middle ground thrown about in the current of near defeat to rising up and over-powering my own inevitable death. I hiss, I claw, I scratch and dig my way out of the steel framed box of depression and fatigue I am constantly having to accept will sooner or later pin me down, fell me in my tracks and confine me to an unbearable darkness that sweats and smells of defeat. This endurance contest changed drastically once my cancer began to grow. For an entire year or more my encapsulated liver tumor did not grow. That was sweet. I was stuck with nothing more than the same old liver fatigue I had when I only had Hep C. There was far more space there to believe, to hope, there was happiness there that I did not have to dig so deeply inside myself to find. I still belonged to the world a year ago. That was hard enough but things just wouldn’t stop there. A wild fire rushed in to feed my tumor and things began to spin out of control. Rising up against the fatigue and depression of cancer is often out of my reach and I am dragged drowing beneath the surface of my little life I so love. But I have nothing else now but this fight, there is nothing else left of my life except this fight. My puppy needs me, my 38 year old daughter, my 40 year old son need me. I need them. I do not want to leave them so I lie still and suck up the pain of my enertia. Its fortunately still mixed up with an over-powering desire to live. My work is getting that desire to over-ride the fatigue of liver cancer. Its daunting to say the least to begin the work of “how to get out of bed,” I go to sleep at night wondering if there will be life flowing thru my veins the next day. My life has become rest, fuel, ride, be kind in your thoughts to yourself girl, you must get out of life all on your own just like all before you and all who will follow you. So ride, ride for your life, ride to find joy, ride so others can ride well just as those who went before showed you how to. Sometimes our last act is our most significant contribution. Be thankful not angry, remember all those unable to be born, those who had such a small taste of life, all who went too young and yes its true, there is no age when I will be ready to quit fighting to live. These thoughts are the mantras I cycle to..its right now to mount that bike and ride some sweet island trade winds. Aloha

Living with Liver Failure

This is how I live now. If I can get up and cycle, I do. It still does for me everything it always has. It has become my faith in life. If I can cycle then I believe anything and everything is possible. The morning of these images, I got up after two days in bed, one of them I was pinned down and in pain for hours as my liver tried to balance and perform all its more than 500 functions. I live knowing that I can black out from a drop in electrolytes or from sudden rupture of varices deep in my esophagus or my portal vein could burst. My platelet count is so low, I wouldn’t last long, electrolites and blood would spill. Its a huge load to carry around in my head. Its no wonder, cancer seems a smaller issue but the encapsulated tumor I have went from not growing at all the first year to becoming huge the second year. It was a remarkable jump in size. It now depletes me of a lot of energy. But its remarkable how strong my body and spirit still are. I can still exercise extremely hard most weeks 4 to 7 hours. I’d rather give in and rest than perform moderate exercise but at times I can fall ill enough that I am grateful to walk the dog or if I cannot hold her leash at least I can amble along with my beach cane. I try not to worry. Its non productive work. It can incite fear as well as anger. We all live one moment at a time. The only things that can eat at me are ascites and the painful symptoms of it which hold me down in bed not moving. Not moving is the hardest thing I surrender to. It pisses me off and then I go against my love for people and life. Its hard to get out from under the depression lack of hard exercise instills in my core being. Its suffocating. I cycled hard yesterday. I even took the dog out on the beach cruiser I run her with. I was lucky this morning and got my food shopping finished so now I rest. I have chores later and I got to at least hoop dance this afternoon at sunset. There’s a lot of living in one day…7/15/16

Olysio/solvaldi

Living With Hepatitis C

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…

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