Monday, June 28, 2010

Why did I wait for so long for toxins

So I am wondering.... why didnt I put more toxins in my body years ago.... maybe the secret to life has to do with drugs and alcohols and so many things I barely did.....

The chemo seems to be working. I am starting to feel better. My brain still has some weekness but I have some time when I can think normally and have a pretty normal conversation. I am starting to be able to eat. I think again about living and dream about things again like when I am healthy and can just take off.... go visit people.... see things..... move.... on the move....

It will be a long time until then but I am hoping that by the time winter comes that i can go to a warm place to live for a while.

Hopeing for the shorter term that maybe I will get well enough to find somewhere where there is a nice beach. Get Alyson to visit and we can swim in Vermont. Be nice to my parents. Wow.... I am soooooo mean to them right now..... like the most monsterous ever imagine.

Hopefully I will feel good enough to really play with Sharon while she is still not working.

For now... fun to be able to eat.... all I can relaly eat is sourdough bread and egg and cheese. Its good but I dont think is the most healthy kind of food. Someday maybe I can eat and choose healthy food.

Maybe I wont have to do too many rounds of chemo..... maybe my new live is about getting toxins every 3rd week..... hopefully there is some reason and my body just needs it and will learn how to just be actually healthy.... for real.....

Slowly and Slowly things are getting better....

Thursday, June 24, 2010

So Sad

Why ...why....why...

I dont understand.... i thought paid for enough the first time around....

why does my body have to act different

both tom and my doctor said is very odd that the liver came back.

i want to feel good

i want to be healthy

i want to go have fun

i want to eat

i want to know what to eat

i am so so so so sad


I always thought that if i died i really hoped it wasnt a slow one

not live and not death

i want to play

play play

i want to swim

i dont suggest being around me..... i am sooooo sooo mean...

i have no control of how horrible I am acting

the chemo isnt very bad.... no this is all just as bad as i was without the chemo

how can i learn that life has joy again

how am i going to just think that life is really really cruel

maybe the chemo is starting to change things but it is soooo small i cant tell

my compter seems like it is going to turn on is so hot...

please dont add that.... i cant deal with that

fuck fuck fuck

i want to be able to play and i cant yet

i get a few minutes to dream about fun

but it goes away

i am a miserable human being

Monday, June 21, 2010

Topp Twins

Sharon Brounght me to THe Todds Twin show..... sooooo goood.... I felt so bad and barely made it thought but so glad that I pushed to make it go because it was great...

Now I learned a DVD The Untouchable Girls and a CDC that goes to it.... I am rpetty sure that it will be watched over and over......

I was one of 10 straight people in the audience.... super fun audience......

can wait till it gets here/

Loving The Toxins, Bring It On

I have been getting about half an hour a day which is leaving my brain unable to think.... i am losing words and ability to make ability to make sence..... really frustrating.

I am sitting in the Dana Farber in Milrod again... with the ame really nice Nurse that i got last time. She is really super. I am enjoying using Jeffreys fancy computer.... i want one.... I am waiting and waiting and waiting for some reason for the toxins to get here..... not sure why.

Jeffrey is keeping me help and keeping me time.

The monister is walking around..... i think he is going to get a not very nice from me when I say... why the fuck do you think i want to make stupeid conversation with you.

All of my healers are in the idea of getting chemo. Even Tom finally said I should do it.

I have no idea how it will suck.... might lose my pant again.... so not looking for that because i have been enjoying the curly hair.... who knows maybe I will turn blond this time....

Wow..... i cant wait until I can get my brain a lot.... i asked for sleep drug.... hopefully that will work.... hope i dont get up and eat at night becuae i cant eat yet....

i think about food all the time.... i really want cream cheese and bread... and yummy indian food... and mac and cheese.... the good kind.... and salad.... and everything.

supposed to start feeling better in about a week.... oh please work.... please please work and make my liver tumors smaller.... and please make it so i can eat again..... and then please get rid of the way the rest of the way from tong ren stuff.... and please, let me go back to health and let me play.... thats all i want to do is play.... i cant take thi any more.... i am done and i need a change.... and it might go worse before it goes better..... please get better faster...please please....

thank for the kind words and thought headed my way...... my head is up my ass and i cant wait until i can be with other people again without my head up my ass.

Friday, June 18, 2010

End of my rope

I am losing my mind. I just dont know how much more my body can handle this. There is no longer any room inside my abdomen.... sooo hungry can eat really.... hurts.

I am starting chemo on Monday. I believe this is the last ditch effort.

my hope..... i want to live and get to play again. All I want again is to play.

i got suggested by 3 of my healers to head to chemo... see if it can by some time.

i am surprised at how quick i went from thinking that it was no roblem to really considering that there is not much hope left. For a while recently I felt sure that I was on the path to death.... oddly things have changed and I feel again like live is the path but fuck...i have no idea how to get there from here..... it pretty much is horrible again.

you can send things to either

38 sunset dr
milford, ma 0175


30 Welles Ave #3
Dorchester, MA 02124

I have no idea how much I will be at one or the other... the idea is one week of chemo in milford and then two weeks in dorchester......who the fuck knows

you can keep trying to call me but i am losing my ability to have much conversation... maybe you will get me and maybe not.... i have no idea if i will call back....

i appreciate every thing i get and hear about but i am once again at the point where i do not respond.

Monday, June 7, 2010

Have I Learned it Yet

Dear Universe,

Have I learned yet what you are trying to teach me. I thought that I learned a lot the first time around. You know, it really would have been enough. I really learned a lot. I am not quite sure what you are hoping I will get out of this time around. I mean, sure when I heal again it will certainly make my belief in healing that much stronger, but I was getting there you know. I was feeling pretty confident about healing. Do you think this is the only way to help me work through my shit with my parents? I am pretty sure we could have found slightly less traumatic ways to do that too. Is this your sense of humor. Maybe if I am in the right mood I might be able to understand it and even think it is a little funny, but not very funny, and for the most part I am not really in the mood in which I can see the humor in this. Its not funny you know.

You know, if you wanted me to experience being pregnant, there are other ways to do that. Like I could actually get pregnant to experience being pregnant. The lump from my liver is too high up, not very believable anyway. Also, when your pregnant you know it will eventually end. You know, May was 9 months and now things are overdue, not very safe for pregnancy. I didn't need to experience having curly hair that much and I could have used a curling iron or something if I really wanted to and also Sara is the only one I know that had that as a side effect of pregnancy. I was happy with my hair the way it was, I didn't need to experience having the thicker shinier hair that some pregnant people get. I know what it is like to get winded really easily and to not like smells and to feel like there is not enough room in my abdomen. So really universe you would have been much better off making me get pregnant to experience pregnancy. I guess I have more control over whether I get pregnant or not so it would have been harder for you to take control. Oh, I see now.

Anyway Universe. Thank you for your care and concern that I learn new and poignant lessons but .... oh no.... I almost asked for a break... but... every time in the last few years that I ask for a break you have a way of surprising me with more of the same or worse.. shit..... does that happen if I even just think it..... No, I am taking control here Universe. It is time to accept that I have learned enough lessons for now on this topic. I am sure there will be others for me to learn.... like maybe you could help me learn that not everything has to be hard to be useful. Teach me lessons about ease. Did I learn that one too fast. I sure was feeling lovely ease when I went to Northampton. But I think there is still a lot more for me to learn about joy and bliss and ease.....



Not Sure I Get It

Dear Body,

Why are you dealing better today with the potato chips than you did yesterday with steamed kale, garlic (still from the garden), and carrots?

I don't get it but I hope you like lots of chicken soup because mom is making us some and I would feel sad if it doesn't go over well.

Love you,


ps. any time now I am totally on board with you healing and functioning the way you were meant to function.

Thanks body

Dear Body,

It has been three hours and I don't feel any worse than I did. In some ways I have more energy so maybe feel a little better. I think you have chosen to go easy on me this time. Thank you. I love you and will try to make better choices in the future.... although, maybe you were telling me that you needed New York Cheese flavor Kettle Chips...... Is there some way I can tell when you need something like that and when you need something similar but more nutritious and easier to digest.

I like to think that maybe you really needed those potato chips but I really think that you just were feeling the result of not having eaten anything since 11am. You seem to mostly feel a lot better when I eat very little. But then not.

Hmmm.... I will keep trying to figure you out. You keep healing so that there is less to figure out.

Thanks. Love you.


No Chemo

Okay so I have gotten some suggestions that if I feel like I should do chemo then I should consider it. I appreciate the support intended with those suggestions but I realize that I get pretty angry reading it. I think this is good. It helps me be even more clear that it is not the route I want to go.

I think if I start thinking about doing it what I need for support is the reminder that it is not in line with my world view and that I feel best when I am living in line with my world view, ethics, morals, and heart. If I decide to do it I will really really have to want it to do it even when my support system is doing what I asked for.... giving me support to follow the path that feels right even when it might be really really scary, even when doctors somehow believe that they can help me, even when they offer pain medications that make me feel like shit and still hurt and then make me hurt more and need to take more medication.

No, chemo is not the direction I want to go. Its like fasting for a day..... at some points in the day it can feel really hard, my body tries to tell me that it HAS to eat, tries to overcome my mind and will..... and then when I get past it and don't eat and wake up in the morning feeling so good and not even very hungry.... I know that my body didn't HAVE to eat and that sometimes sticking with the will is a hard path...... (not that I am fasting now, just from my experiences with fasting).

Anyway, the point is..... please help me stay strong in my path. Recognizing the strength of my reactions to the chemo suggestion helps me know that it is not the path I want to take.

Sunday, June 6, 2010

Short Lived Up

One of the big challenges right now is eating. It feels bad. My energy plummets, my mood plummets, and my abdomen gets so tight. I feel like I want to open my rib cage to make more room.

So quickly I can go from feeling feisty and up and full of fire to live to fear and surrender to my body seemingly getting worse and worse.

I really would like it if things would make a clear shift towards me feeling better more of the time than not.

When I am in this space I doubt I question I wonder..... should I do chemo..... I start to loose touch with reality.....with the reality I want for myself. I really want to live.... I got a taste of the amazing joy life could hold... of the magic.... of the ease...... I want, I want , I want......

Because I Can

Yesterday I was sitting in my room. The air was thick and the sky was grey and I knew with every part of my being that I needed to be swimming naked in a pond, breathing air filtered by trees, and spending time in a natural building. For two years I have wanted to see the cabin that Daniel built and after trying to make plans that would include visiting the cabin recently we realized that it just wasn't going to work. I tried to let go of the idea but realized that I just didn't want to. This could be the last opportunity for me to see the place and I didn't want to let go of that.

I was talking to Stef and said I wanted to go there and she asked..."whats stopping you." I gave answers like.... it is three hours away, it would use a lot of fuel, I don't feel that great, it doesn't make sense, what if I start feeling worse, etc. After I got of the phone it became completely clear to me that if not now then maybe never..... If I started to feel worse I could deal with that then....

So I called Daniel and told him I was coming and that he should get back to me quickly if that worked for him....

So I took off. We met in South Royalton which is a super cute Vermont town that had a square more similar to the Missouri style town squares than what I am familiar with in New England. From there we drove through breathtaking scenery to his place. There were hills and fields and trees and one place to which I found myself exclaiming out loud and feeling like a child that was like a tunnel through some dark overhanging trees.....

First stop.... the pond..... I needed to swim naked. I haven't done so since I left DR. It feels core to my being my health. The pond was cool and refreshing, the air was crisp and clean. The pleasant breeze kept the bugs away.

Next stop, a cool spring flowing at the bottom of his driveway. Yum.

Next stop the long awaited visit to the cabin. Even though he was all moved out and there is some challenging energy with the dynamics with the owner of the land it is on... the cabin still held a nurturing, healing, energy of a space that was built and cared for with keen attention to detail, heart, and soul. It was exactly what I needed. Almost felt like home (only the building was pretty much finished and had some details that really made it stand out.)

I never thought it would be nicer to be in a natural building that someone else built than one I built. It was so liberating though to be able to look around and only see the beauty. To not know where mistakes were made or stressful stories of building happened. To feel no responsibility for what might still need to happen. To simply be able to enjoy and enjoy and enjoy and take it all in.

Something that stood out to me a lot (afterall I am still or was still a natural builder and look closely at the details and try to understand what is going on) is that every detail I noticed I knew was thought out and deliberate and also made sense to me, from the layout and design, to the finish work, this building is full of details that can make life more pleasant. This space ushered me to practice chi gong upon waking.... it didnt feel like a chore at all... I just wanted to do it. I even wanted to meditate afterward.

So I stayed for less than 24 hours but felt pretty good the whole time. Nothing like nature and love to heal the body.