Riding it out...: Running on the fumes of exhaustion: June 2015

Riding it out...: Running on the fumes of exhaustion: June 2015: I just cycled again for another two hours. I cycle hard still but mostly I cycle slower now. My right eye is looking nasty, it has a gra...

The Age of Cancer

October 30, 2015

I had to pack up my life and move it again. I rented from a landlady that is short on being able to share what she rents to you, a control freak. Yep she knows I have end stage liver disease, she often commented, " don't you think you will longer than everyone else, you look like you will live longer than everyone else." Right'o...thats why I need a transplant, just in case. Quite stupid, I think but perhaps not, perhaps she wasn't thinking. I lived there a few weeks, all moved in, not organized yet and she wants me to move, why, I ask, its not working out she replies. Five months later, again, its not working out. Guess not if all a landlady seems to want to do when home, which is most of the time, is watch my every move. I cycle hard, no not often, not enough energy in my liver for often. I hoop dance like a Viking gymnyist. I am willing to work my body, my organs because if I don't I will die even sooner. Without exercise, there is stagnation that nails me down. Its insane pushing myself back onto my mountain or race bike, it takes knowing, do it or watch your eyes turn the color of honey then turn the color of dingy dish water. Watch your gut inflame from lack of circulating blood and oxygen, sit there gal and soon you will be strutting a belly that suggests 3 months pregnant, maybe 4 or 5 months, I've had it fill with 13 pounds to 19 pounds of just water. It takes a mother load of humility to wear it because my face on its best best best most unusual day might suggest age 53 but I turn 64 soon, not many days I can fool folks at my age. So the image: my god that old woman looks pregnant, look at her, really its a normal reaction from eyes to brain to try to fathom it. Most folks have no idea what dying of liver cancer looks like, I sure as hell did not. I am fucking upside down with exhaustion, its either now or tomorrow but I got to cycle so hard it damn near kills me. My trunk is getting hard as a true trunk. I am dragging my truck on a long arduous journey into its death, basically. Fun, I get to create that. People, I can barely do people, too many contradictions in them, my mind is not on a journey much like anyone else's. Folks are living, dreaming, hanging in groups, you can count on them. I on the other hand am fairly well done with society. The only dreams I have are staying alive a little longer, I do not want to leave my children. My other dream is that I get to live on one of these islands till I die on one of them. Not ready at all but fuck, I do not want to have to leave here where it is warm and I can be in the ocean. I want that even though everything I do, I do alone or with my dog Roxy. I cannot much focus on getting much involved with humans, its disappointing on the outside, with them, my mind is so full of the thoughts, "you've no idea how hard standing around or lying around is. Cycling, hooping, swimming, I forget about humans, I do not think much about my fatigue. Being alive is my joy. I do not know much other joy or experience it with humans. I experience very little intimacy any longer. Most folks will take a step back from the ill and stand a mile away from the dying. I was once no different. I was well and lost in my life. So blaming anyone is a stupid joke, its ridiculous. The energy I release suggests "don't get too close to me." I do not want to keep being hurt. I have friends of decades and now when I need them most, I do not hear from them. No, please do not get too close to me because I know you will forget me, disappear into your own life and health then I must learn all over again to accept its your choice, I once again get to start over having no one and begin again alone. I have learned that for me, its easier to skip having to start over again and just keep alone with Roxy. But I long for love, I long for true connection, I long for small considerations after all I have liver cancer.

December 16, 2015

I found a new home, its lovely here. I am back again in the flow of humans, all ages of people surround me and they are all always moving. I am back in surf territory, The Seven Mile Miracle as its know to the surf mecca of the world. People wake early and run, walk, jump on bikes, head with boards to ride the fierceness in the morning's ocean currents, the days, the evenings. The beach is out my kitchen door. Children are on bikes dressed for the elementary school down the bike path. Dogs are being walked. Its a carnival of folks here. Ah just the break I needed, my landlady throwing me out because I landed in the sweet flowing embrace of a neighborhood where folks are so engaged in their lives and the island that keeps them too busy to sweat the small junk that all we human annoy each other with. Oh yep, I still keep much to myself but we do not pass each other here without a nod, a good morning, good day, good nite and now and then there are conversations. Its so easy here to exercise, I just feel the neighborhoods energy and let it lift me. I had wanted to feel this alive again, I had wanted to feel visible, I was longing for attention, I was hungry for human behavior I could identify with. My take is, the universe arranged this. All I wanted was passion not stagnation and I was mired in stagnant energy for more than two years. I learned a great deal when held down. I always do. 

In The Middle: The Sweet Spot of Living with Liver Cancer

Night

September 16, 2015

For some reason I have been for weeks now in the midst of normalcy. Yes, I am still often lying flat in bed resting but my mind spirit and body are soaring when up. I do feel some fatigue but mostly I feel excitement. I survived another year after my bleed out, I had so hoped I would. Its been almost a year and a half now. The cancer is twice as large too but nothing is keeping me down, I keep rising up. I am thinking of cycling today. It connects me to myself. When I cycle I believe in myself in a way that I never do off the bike. Its not easy cycling with the liver fatigue I have.

September 18, 2015

I did find some cycle mates on the 16th and cycle that day for 3 hours. It was fantastic. I am 63, they were 31 and 33, one is becoming a lifeguard. I out cycled both of them but I am sure if he wished, he could have raced ahead of me and in all fairness I was on my race road bike and she on a mountain bike and he on a beach cruiser but fuck what an age difference. We cycled out here in the country going out to Kaena Point.

I had serious leg cramps after my 3 hour cycle but nothing like when I began cycling and building the leg muscles required to cycle hard and fast for long stretches of time in the hot sun and it was very hot on the 16th, we started out when the sun was the hottest.

  Yesterday, I cycled an hour down to what I call The Green Hole. Its a small surf break but really there are very few surfers out here. There are also very few tourist.

I am lying in bed in Makawao on the island of Maui. I've come with my male gay friend that I met at The Camera Club of New York in 2001 when I moved there. I no longer travel alone. I do not have the energy it takes. Liver cancer requires a lot of rest so I do but I do it so when I am strong from resting enough, I can cycle, hoop dance, swim, all for hours. I am presently quite strong. I hoop danced one day 3 hours non stop. Tomas and I have been out the entire day today driving up to Hana. We only arrived yesterday at 6 a.m. After leaving the north shore by car, I drove us and got us into short term parking. I was up at 2 a.m. 

I swell so much now. I do not have Ascites though. I get an inflammatory response to everything I eat. I have lost 4 pounds but still my gut is altered from having liver cancer. As I understand, the liver will swell very large as it dies then just before death it shrivels into a small hard knot then with some time everything, blood, oxygen quit flowing through it to such a severe degree that protein builds and is not eliminated because bile can no longer be produced and the excess becomes ammonia that eventually hits the brain and shuts it down but its also possible that the body's ability to function simply brings death head on instead of inducing coma. I have very low platelets and  varices in my gut under pressure so its possible they could burst and next time, I will bleed to death. Its amazing I am still living after the last bleed out. I so wanted another year and its been another year and a half.

I will never give up, I will always keep trying. I will always find something to hope for, something worth hoping for, if not for myself then for someone else. Hope brings peace even if we know for our own survival, we have exhausted it, then I will hope for someone else.

Tomorrow we drive to Lahaina to spend the day with my son. I want to go to the jungle, the bamboo forest, I'd like to take photographs.

10/9/15

Running on the fumes of exhaustion: June 2015

I just cycled again for another two hours. I cycle hard still but mostly I cycle slower now. My right eye is looking nasty, it has a gray tint in the white that will turn yellow if I cannot move this jaundice that is causing it out of my liver. Right eye looks fine, its still quite white. Its spleen side. Both organs are quite swollen. I just keep on riding. I have reached the point where I have to ride on the fatigue, keep pushing until I am feeling like riding. My liver holds very little energy so its a hard push to cycle two hours out here in the country and I am now off road a lot taking a wham bam busting ass off the seat ride over some of the terrain out here. Too bad I do not feel like riding, got to ride anyway. There is no other way to keep the jaundice and ascites at bay. My liver does not circulate blood and oxygen thru it of its own ability, thats gone. Once I cannot do this, the doctors will take over and their medicine is not healthy but it will keep my organs alive but it cannot do much more than that.  They will stick their needles into my belly and draw the fluid out of my belly. My eyes will turn yellow as the jaundice takes over the liver because I am not circulating oxygen and blood thru hard exercise. My organs are swollen so tightly. Bloody hell what a fight to live but at least I can still try. I know the day will come when I am flat and will live in memory only because finally this liver disease is not going to let me up again. I sure as hell spend a lot of time now resting. I cannot do in one week what I used to accomplish in one day. Its a mind fuck that I see and avoid. Its not an attitude I can allow myself to hold onto as it will end my life as I know it and my life as I know it today is still worth fighting for so fight, I will. Its going to be a hard grip that finally holds me down. I am willing to bet I can last a long time just on memory once it does nail me to my bed. Looks like I am running out of everything, god damn it but I did it to myself, a needle into my arm for a boy at the age of 20 then at 28 I began drinking and dreaded the idea of not drinking so drink I did. I am Cherokee in part so I was one hell of a powerful drinker. I traded everything I had, everything I knew since I was young to pull myself up this one last time and live. I have been sober since 2004 and fighting. I have been thru two treatments since then. I have moved to this island which is all about movement and there is no shortage of people here lost in the pursuit of getting everything they can every day. I would not have lasted this long without moving here. The east was too cold, New York City was too demanding. After the first treatment in 2004, I was not the same person any longer. After giving up booze, I was not the same person any longer. I packed up what I knew of myself and brought it here to see if there was no more to me than the bit that was left, the bit that I did not destroy and there was. I became someone I never knew that lived right inside my soul. I was always that close to this person I have made myself but I could not see her as my life was about drinking and I hung with the boozers. In 2001, I left to go to NYC where I could immerse myself in my photography and be around mature adults that did not use booze to get thru life. I couldn't do it either until I was diagnosed with this awful disease in 2003 then I had the biggest reason in the world to let it go, cut the cord that ran from my being to booze. I still remember moving here, knowing no one except a couple in town that I became friends with long before any of this arrived on my door step. But they were in town and I was in the country so essentially I was alone on an island. I stood in the shower and cried most days because I did not want anyone in my complex to know I was so heart broken and alone. I had a roommate and I did not want her to know of my grief and struggle either. I could not ride a bike, I could not go into the ocean, my legs were too weak, my arms too weak, my fear too large so one day, one moment at a time I pushed myself forward. Now with liver cancer I am still cycling 2 hours stretches even in the hot sun. I can pick up my race bike and carry it up a good flight of stairs, it weighs 25 pounds. Two years ago it was hard to do now its a piece of cake even with liver disease. I can still hoop dance for hours. I am a strong swimmer, I created my own style. I can hike for a couple of hours. No one knows I am ill. Everyone thinks I am strong, healthy and that I am not ill and dying. If they could feel what I do they would feel the years of struggle building up, the disease blocking more and more of the room my organs need to circulate blood and oxygen.They would feel at least a tinge of death living in them and if they had almost bleed to death and had two transfusions, walked around with barely an ability to clot blood and a gut full of varaces then they too might feel a tinge of fear. I have learned the hard way by pushing myself that I can look fear right in the eye and keep pushing. I hope I never lose my focus.