Monday, September 13, 2010

The Last Chapter

Hi Everyone. This is SharĂ³n, Tamar's sister. Tamar died yesterday, Sunday, September 12th, at around 3:30 in the afternoon. This is the story of her last day here, from my perspective...

Saturday night we finally got Tamar's pain under control. She slept soundly through the night with a very high dosage of pain medication. Sunday morning she was not able to communicate with us much, but she could see and hear us, and communicate a little. Me, my mom and dad, and Nathan were all here. We each got to have small conversations or moments with Tamar throughout the morning. At around 3:30 she was showing signs that she was moving toward death, and we all circled around. I cradled her head in my hand and my mom sang to her as she went on her journey from earth to somewhere else. We were so lucky that Sandra, the amazingly awesome hospice nurse, was with us through everything, holding us as well as Tamar.

Nathan found out later that a group of Tamar's friends from Dancing Rabbit had gone out on the land and had a circle to celebrate her life. Right around the time that she died, they all yelled out "We love you Tamar!!"

I feel like Tamar's death was beautiful and peaceful. Shortly after she died the expression on her face looked like she was lying in the sun on a warm rock, smiling a little with her eyes closed.

Our tentative plan right now is that we will be driving Tamar's body to Dancing Rabbit, where we will bury her and plant an Asian Pear tree over her, and have a funeral ritual. That was her request. Later we will have a memorial service in Massachusetts.

Many many thanks to all of you for the love, support, magic, prayers, and everything else you sent to Tamar and to us along this journey. It meant so much to be held in the embrace of Tamar's amazing, loving community.

Tamar told me that after she dies, I should read her journal/sketchbook. I want to leave you with a small excerpt from what she wrote:

"I would like to become free of this restrictive cocoon but I don't know what that will look like. Free and alive or free and dead. Either way free." --Tamar

Sunday, August 29, 2010

Following Heart...where are you taking me?

I have been wanting to write for the past few days. I couldn't find it in me to sit or to get my thoughts out...mostly it was just wailing, sadness, fear..... too painful to sit up, too painful to lie down... still not like the pain from the first time around, or maybe i deal more effectively with pain now. But only slightly. I am able to do this, write, right now from the street medicine that is left over from the first time around. For the first time trying it I think it is helping and finally I am feeling it in my head. I want so much to have the ability to find another world where I can get my mind to.

Here goes..... stream of consciousness only not super clear....

I really appreciate my doctor. This past visit I was trying to decide whether to do a new chemo regimen.... thus in my mind officially starting the chemo surfing that I really though I never wanted to take place in. The odds start getting worse and worse. 30% chance that this will help me get 1 year. But really it is shorter than that because some of that time is feeling shitty while taking the chemo and then when it stops working. So that leave me with maybe something similar to the last triumph which i realize only really lasted 3 months. April is when i started feeling discomfort again. It seemed like a long time but now i realize that it was only three months.... nice that it felt longer than that.
Anyway, my doctor really listened to me.... to more than just my words. He listened to my body language, my words, and his heart. My doctor suggested to me when i couldn't make a decision that it didn't seem like it is what I want. I knew he was right because i felt a rush of relief when he said that. I can always decide to do it whenever..... he still reminds me he is available for whatever I want.... which isn't totally true because i do not think he would help assist suicide if I wanted help. But within his legal powers he is willing.

The nurse also reminded me that following my heart is what I need to do..... noone is forcing me to do the chemo. She cried with me.

The thing about this whole conversation is that I was still having less pain because of the huge doses of steroids i took in preparation for the chemo. It is easier to feel confident when I feel a little bit of something closer to physical comfort.

It is much scarier now. How do I get though this.

I told Nathan when we were coming home, out of nowhere, I need some ceremony/ritual, it might be time for Tereza to come. The very next day one of my healers came to visit. She came prepared with ceremony. There is still magic even when I feel like shit.

I want to be able to do what we tell the laboring woman to do.... dive beneath it, let it just let the pain roll over you like an ocean wave. Hmmm... there is nothing wave about this unless the waves are so big I cannot see the end. I hear there is a place people go when the pain gets too overwhelming. Why cant i find the map to that place. Is it from the drugs i am trying to take to kill the pain. .... do i have to let it get so bad that the map is clear?

maybe the next step is to try to drain the tumors... i think they really have no idea if that will work... what if the centers of the two biggest tumors actually aren't liquid yet.... what if they are still alive.... what if they miss.... what if.... maybe it will help.... maybe it will cause some kind of internal infection and have really bad possibilities....

hmmm... i am sick of typing now.

Wednesday, August 25, 2010

Only in that day

I have gotten good at it when I feel better. I take each day for what it is. Live it to the fullest that I can. Recognizing that it too might change.

When I don't feel well i feel like it will go on forever. That it will be this day and the next and the next. I feel surprised when I feel better. Tom says "better is better." Sure it is.... but worse is worse.

I and others get excited when I feel better. A glimmer of hope. It is hard for me though when I share that I am feeling better for a day and then I start to feel worse and I get messages about how people think I am feeling better still.... NO I FELT BETTER THAT DAY..... everything can and is changing very quickly..... it feels better sometimes all of a sudden and then it feels worse all of a sudden. It sucks.... and I hurt.... and now Nathan keeps finding things that make me hesitate with the chemo that I am being offered.

Why aren't the doctors telling me things like "this chemo is made with something that could give you a deadly allergic reaction which is why we are starting you on steroids the night before." Hello, isn't that important? Or the part where they are decided to treat my cancer based on one part of it but not the other...okay well that first one they tried on that idea didn't work... and now the second.... why is the third still being based on that idea?

Sometimes I wish I was just naive and would follow whatever the experts think... only I have someone advocating for me and Nathan is researching everything that I consider putting into my body....thankfully because I have very little energy for it. And then how do I decide.... with the idea that maybe I will get some relief..... I cant do this much longer.... I hurt.... i need more days of feeling good..... one day of feeling good seems to cost me two weeks of feeling shitty.

I have no reserves left...... I hurt. I need a break.

Saturday, August 14, 2010

What if the plight of the local currency is sexier than me?

Nathan has been a most amazing support to me since
the moment he arrived

He has been available to me on a moments notice

Cooking, cleaning, emotional support, body work
Research, leaving his friends and home

Being in Greenfield has been great for both of us

I worry though because there is a lot in Greenfield
that is sexier than dealing with a sick friend who is not always

Especially I am worried that I might be ousted by


Nathan has taken an interested in the local currency
and it seems to have taken in interest in him.

He is always with it, it is always with him.

It seems to be much more willing to cuddle
than I currently am

It is hurting, maybe on the brink of death

It needs help, needs revival.

So I cant even one up it on that.

What if Nathan decides to support that Greenfield dollar
more than me.... I think it is less toxic.

I will be sad but I understand, reviving the Greenfield Dollar
might make a bigger impact in the world than reviving me.

(this is a joke..... I am super excited that Nathan has gotten so excited about trying to help a nearly unknown local currency come into widely and valued use)

Wonderful Day

Today I could celebrate. Celebrate today. Now. Life of today.
I woke up today and checked in with my liver. I generally do each morning. A morning palpate. Have your found your strength liver? Whats doing?
Today she had some big news. Her tumors were a bit smaller. The edges were more clear. One that hadn't had much change had some change. Best yet, I couldn't feel her from inside. Such a treat when she can just go about her business and not remind me every moment that she is there and having trouble.

Today was the farmers market. I like it there because there is live music, locally grown beautiful vegetables, people who I enjoy being around, chatting with, etc. I love that it is in biking or walking distance. I love that it is small but vibrant. I want some red meat. Last night, no way to know if I would be up for it. This morning..... I am going to try to bike to it.

Nathan had a Tamar day off but my fire was stoked. I was going to bike even if I had to crawl back home. I am pretty sure that since we biked there together if I couldn't make it back Nathan would not have said "well Tamar, it is my day off and you got yourself into this mess, you need to get yourself home." It wasn't an issue anyway, we biked to the farmers market as friends. Like friends who can just hang out and do something fun together (albeit we biked very very slowly, hello non-existent muscles). Nathan seemed very content because he was promoting the greenfield dollars to the sellers at the market and getting some converts to accept it. We were both very content at the amazing price and availability of organic 100% grass fed local ground beef. Hey there blood, don't worry there is some iron coming your way soon. We shared one of our first local apples of the season, Paula Red had great texture, juiciness, sweet, with a tart overtone. She was small and shiny and beautiful.

Oh yeah and how can I forget. Tereza was with us too. She joined me last night when I opened my mail and from Tereza I got Tereza. Tereza is a pretty kick ass lady and she now resides on my liver helping it to keep going in the direction that it went overnight. (I am not on drugs.... in case this is too cryptic, Tereza is a temporary tattoo send to me by Tereza, who is not a temporary tattoo, she is more a permanent tattoo in my life and I love her. Now, Tereza, the temporary tattoo lives on my liver. The permanent tattoo Tereza lives in Missouri and in my mind and heart and imagination). Hopefully I will get my act together and take a photo of Tereza to post.

Then I went to acupuncture. I have been going to Greenfield Community acupuncture. The scene is really healing. In fact I am not sure the needles are necessary. So far it has been only women, by chance. I feel a nice connection with the acupuncturist. She could easily be someone in Sharon's drumming group, which is to say, interesting, funky, caring, sincere etc. I showed her Tereza. She thought she was great.

On my ride home, I weaved through non-main roads to avoid the traffic. I ended up right at the place to get 5 gallon buckets. I just told Sharon that I wouldn't know where it was. So of course I had to stop. I really wanted to see if they had 2 gallon buckets for making pickles and Kraut. They didn't but they were lush with 5 gallon buckets. I limited myself to 2..... the addiction is still alive. They ousted the bag I use from use from the crate on the back of my bike. The bag then uncomfortably hanging from my shoulder knocked against my knees. I liked it though because then I could feed my bucket addiction and be reminded of Sue at the same time.
Hello again muscles. Thank you for still being able to function. I will go easy on you.

Back at home I walked in to the kitchen where my sister was cooking and waiting for me so we could spend some time together. Nice scene, sister in a chipper mood and available, comfortable home, Nathan around somewhere. Pretty quickly we went to the couch so I could run Sharon's hands over my liver. So she could feel the changes of the night, so we could revel in feeling good, in riding my bike, in hope. We also ended up playing banjo and fiddle. It was super fun and I was still energetic.

This evening my mom joined us for dinner. I felt a bit sad because it was hard for my father that I set a boundary that I needed to set which was that I was not available to see both him and my mom at the same time and that mom was going away on Tuesday so I was only available for seeing her tonight. I feel very proud of myself though for setting a boundary which felt necessary for my wellbeing even though it would be hard for my father.
Sharon and mom and I went to a casual thai restaurant. I had gotten a menu earlier in the day so I would be ready to concoct a dish that would work for me. I worried that all the changes I wanted would end up in disaster. I wanted the coconut lemongrass soup to be without any sweetener and to have more vegetables. The cook and co owner made it absolutely perfectly. I felt so so happy with my food. It went down really easily and felt good for my body and so far so good on how I feel afterwards. I couldn't stop telling the not-really waiter but person who brings food, takes the orders that we wrote down, etc... to thank the chef...than as we were leaving I had to go thank her myself. Yum.... maybe I can go again next week. Or tomorrow. Or right now.

Today I rode my bike.

Monday, August 2, 2010


Getting through the day but I don't feel hopeful about what the doctor will offer. My blood seems to prove what I suspected which is that the chemo stopped working 4-5 days ago. Not sure how this works.... if I take more does it work again? Or is this the sign that it is not working and wont work anymore. He said he has some ideas from the Dr. in Iowa who sends people (but not me because I do not have the right cancer) to Switzerland for some kind of nuclear treatment.

I ate too much today... really anything is too much... it makes me hurt.... but I was hungry.... and emotional.... and maybe its time to just eat whatever I want.....

trying to stay calm..... what will tomorrow bring.... ahhhhhhhh.....

Sunday, August 1, 2010

I Don't Want to Ride the Roller Toaster

So first thing is that yes even though it is 2 am I purposely wrote roller toaster..... this comes from my moms super cute speech pathology client who was trying to say roller coaster but instead said roller toaster..... my mom worked with him for a while on it.... whats a roller toaster she would say... he just wanted to get on with his sentence... but now roller toaster is in my mind and I find it fun to say..... its not at all pertinent to this post

Once I was on a roller coaster.... I don't really like roller coasters.... because there was not much line, when the ride finished people wanted to go again.... the operator of the ride said "I have to hear how much you want to go again".... so everyone except me was screaming.... alas.... they did a good job because we got to go again..... I really really wanted to get off but it was too late... we were going. Thankfully I knew it would end in probably a minute....

I am on a roller coaster. This time I didn't even put myself on it. Somehow I got on it though. This ride operator turned it on and walked away...... Hey...... I am ready to get off.... I was ready months ago..... even almost a year ago..... I would really like for the ride to stop and I can walk away from it.

That is to say I have not been feeling well again for the last 4ish days..... I can feel the tumors which had not gotten much smaller...gaining ground again.... I am awake at 2am and my abdomen hurts... and I have fear that the chemo is not going to work anymore.... and then what.....

okay Tamar.... one day at a time... one hour at a time.... one minute at a time.... one second at a time..... crazy shit has proven itself to happen..... May I please, step off the ride now?

Tuesday, July 27, 2010

New Address

Hey there yall,

been so loving getting mail. here is the new address

Tamar Friedner
72 Beech Street
Greenfield, MA 01301

Sunday, July 25, 2010

Sometimes Its Worth it to Pull the Cancer Card

Friday was a big day.... it was my first time going out (okay over to a friends house) since I started feeling really really bad. I feel pretty excited when I am both alive and well enough to do something other than sit around the place I am living, or going to healers, or going to the hospital....

Nathan and I went to Eleanor and Hilary's tong ren class, which is actually only and online class. Now it is an online class and hostel. I pass out on the couch and Nathan on the floor. Sometimes people have been able to see that we are there but for the most part I think we are under the radar. It is a fun scene.

The plan was then to go to Rebeccas place which is very close to where the tong ren class is. We decided to stop at a grocery store on the way. I am a bit addicted to food browsing and Nathan is addicted to veggies (and hopefully succeeding in getting me addicted as well, so far it seems like it might be working). Our choice was whole foods or the locally owned coop... of course, we choose to go to the coop even though when I was there before I didn't like the feel I got there.... but I want to support local and whole foods has its whole political challenge. So we stop at the coop. As most cute coops that I have been to there was a little parking lot for people who are shopping there. I felt thankful that we didn't have to search for a parking spot in Cambridge and wouldn't have to walk far.... which is getting easier but I have very little muscle again and my body is working hard on healing. I noticed a sign about permits and such but I had such a clear story in my head that the lot is for shoppers that I didn't really register what the sign said.

Nathan and I went about what has become ritual.... we do some real shopping for a while and mostly I just browse and Nathan is okay to go along with it so far. We had a conversation about how we didn't really like the store and maybe we should go to Whole Foods but we are already here etc..... basically we were not happy with the selection.

So we buy a few things, pay and head out. When we get outside we automatically head to where the car is. I looked at the car...or really the spot where I thought the car should be.... "Nathan, is that where I car was?" He instantly realized that the car was gone and his computer which is pretty much his entire business. "Nathan, do you have the keys?" "Yes." Shit..... towed.... let me read that sign..... oh, this lot requires permits and doesn't really go with the store exactly.

So there is some part of me that just thinks that since I pretty much cant handle anything else that life will hold back......and wait for another time to dish it out. Two people who haven't driven much for years.... Nathan might have never owned a car but I cant the city with no car and a liver full of tumors..... nice..... okay okay.... i am really happy that i have a cell phone now. It definitely makes my life easier right now. Thankfully there is a number for the tow place on the sign..... lets call and make sure they have our car......only.... we don't know the license plate number when they ask for it..... hmm.... I will just call dad and ask him what it is.... only.... he is in the car, driving to the Cape, and no longer remembers all of the license plate numbers of the cars like he used to...... and has no ideas of how to find it....

It felt actually really great to have him have no idea, no plan for how to help the situation, and thankfully a willingness to just say, I don't know what to do for you..there is nothing I can do. Wow, I feel so happy that he was able to just say I got nothin..... and was willing to let us just figure it out without him trying to come up with a plan..... Anyway, still left us feeling pretty lost... I call Rebecca who always has a great attitude for things like this.... she was on her way to save us....

We decided that the car must be at that place and headed there. Dad told us we would likely need cash which was great to know ahead of time..... $158. Damn, thats more than I get in food stamps each month. Is there some way out of this? Hmmm... I was trying to just accept it and let go of thinking of all the things that money could do that feels more worthy a cause of using it..... trying to not complain too much about the way the sign reads that makes it hard to tell what it is trying to say.... trying not to just be pissed.

I was raised to try to get out of things like this.... I generally feel kind of embarrassed of doing that and if I am going to do it I feel that it is really important to be completely honest. Nathan was up for the challenge. When we got to the tow place, my shaved head spoke for itself and Nathan explained the situation. The woman we were talking to seemed about to just let it go and gi eus the car back.... but the other two women jumped in and were not willing to even give us a break..... they did tell us that we have to talk to the person who is contracting for this towing and that they couldn't tell us who that was.....

Nathan went on a mission and used Rebeccas phone to look up the store and found his way through that to someone who would pass our message to the person who we needed to talk to.....

It was starting to get long, we hadn't eaten since morning, I had little hope and was nearly ready to give it up and just pay. We decided though to head to Rebeccas and leave the car there and hope that the person would really call us back. We called from Rebeccas to check what the status was and holy shit..... they completely waived the fee.

Wow..... Thanks Nathan..... that certainly made a shitty situation have an ending that left me much more relaxed and less annoyed than I otherwise would have felt. Made for a good story and we still got to spend time with Rebecca...... just sitting there and talking which was great and all I was up for by that point.

Thursday, July 22, 2010

Is That Death or is it... Holy Shit its Sleep

It has been months now since I have slept well. More recently there was sleep each night on the order of maybe 15-30 minutes. Then for a few weeks I have taken Ambien with diminishing success each night (the doctor prescribed me what I think is the highest dose...remember Tamar.... check your doses for some reason they always want to give you high doses of things). Three nights ago I tried a new version of the drug which is extended release. There was pretty much no sleep from it. Hmmmm... So two nights ago I had the feeling not to take anything but melatonoin.... same lack of sleep success. Last night I went to bed really late.... I even felt like I was outlasting Nathan who has been able to stay up until two recently. Last night, no drugs at all. I both didn't feel very tired or sleepy and was still in the, I cant stop talking now that I actually feel up for speaking, now that some big parts of me seem to be showing again. Finally I did go to bed. Thankfully the lack of sleep in general has not come with a racey mind or anxiety, just not sleep. When I got into bed and put my head on the pillow.... there it was I thought.... no sleep......

Except, hours later my body was nearly one with the (very comfortable) bed. Me, the bed, have I turned into a mattress? I couldn't really move, my eyes were not opening, my face was smooshed into the pillow...... Is this what it feels like to be dead? I didn't think that it felt imminent when I got into bed. Its not unpleasant... feels relaxing and soft and floating...careless even.... oh wait..... that feeling.... thats the feeling that I have to urinate... I know that feeling a frequently lately (the chemo makes it so I cant make it through the night and especially when I get the first drug and they also put in a whole bag of fluid to try to flush that toxin out as fast as they can so it doesn't hurt the kidneys, so they give me a drug that makes me have to pee pretty much every 10 minutes for an entire day plus). Oh, wait, when I try I can move.... my eyes can open even though they don't want to...... Holy shit..... thats what it feels like to have a deep, intense, hours long, natural experience with SLEEP. I SLEPT..... that was like something I have experienced for the very first time.... its like experiencing snow for the first time, or fireflies and a place that is abundant with them, or bioluminescence, or smelling elecampaign root fresh from the garden, or watching a butterfly emerge from it chrysalis, or birth, or a Missouri thunderstorm, swimming naked in the pond, biting into a sun gold tomato, hearing the pop from harvesting a garlic scape by pulling on it, knowing that thoughts are connected with no doubt, and on and on......

SLEEP...... wow, I am feeling in so much wonder and awe at that amazing feeling..... not only did I get a good long sleep cycle once last night..... but three times. THREE SLEEPS..... SLEEP......YIPPEE......

Tuesday, July 20, 2010

Life Death Continuum

Yesterday afternoon and today has been a crazy crazy time for me. Yesterday morning and the day before that I was unable to cope at all with the discomfort in my body. Eating became out of the questions again, it was even hard to drink. It felt like my liver was once again taking up even more space than it had been and it has been a long time now that there already is no more room. It felt clear that the chemo was not working and I felt done. Done with life. Done with having anything left in me to go on. I wished that I had a good plan of how to help my body find death faster than it seemed to want to. I could not take it any more, I had no more even ember of an ability to get through it. I felt envious that Meadows dad had found the path to death. I felt frantic that I didn't know how to do it and that I felt too scared to try something.

The results of my blood test actually showed some improvement in liver function and in bilirubin..... I think that it gave me some tiny tiny barely tangible hope that something was working. It was not enough and I still wanted out... out of my body. A shame because there is a lot of my body that works very well. The normal I just toxified my body blood levels were down... red blood, white blood, etc. I accepted a procrit shot. I find it a very wierd and probably in the long run a not very good for the body, chemical that forces the bone marrow to make more red blood cells. Hmmmm.... when does it tap out the bone marrow? Anyway, for some reason I accepted it even though I was thinking..... adding temporary health is not going to bring me to death faster.....

Nathan once again packed up all of our but mostly my stuff and we headed to Monica for our appointments of body and energy work. I am very thankful that my parents gave him a session with Monica for his birthday.... not only was he supporting my physical needs but he was listening to me tell him that I thought I was really done...... One hour of pampering cannot come close to all that is coming outward from within Nathan but a small help towards giving Nathan some support. My session with Monica was pretty amazing. I felt significantly calmer and physically somewhat better from the session. It seemed to improve each hour that passed.

That is the crazy crazy part..... When we got to Lea's I was up for unpacking some of the food (it feels so good be able to do something), then I was up for talking with Nathan, then I was up for chatting with Lea when she got home. I was even able to send some email...... This change physically and mentally was not explainable to me except that maybe the increase in blood, body work, change in location, and potentially the chemo started working... or maybe my body finally realized that I was seriously unable to take any more.... nothing..... that a change had to happen.....

So even though I got very little sleep trying out a long acting sleep medication that didn't cut it last night I got up in the morning almost perky. I was ready to head to the garden..... to walk the block to get there...... to harvest what is now lots of veggies.... to spend time outside...etc...... I feel like a different person. I made the walk with little problem and Nathan and I harvested lots of veggies. I felt okay, barely even tired......

This is more life than I have felt in a very long time. I cant stop.... its like I need to life every moment of this day because who knows if I will finally continue feeling better..... and yet, try not to dwell on the fear of the potential to feel bad again...... its so easy when I feel like this to get ahead of myself too..... what am I going to o later, tomorrow, next week..... the people I can play with... what to do in Greenfield when we live there, traveling, etc....... I got back home and talked and ate and cooked... I had to force myself to take a rest.

There was a fear about letting people know that I feel so much better (long way to go but this is so far from where I was it feels glorious). What if that makes it stop, what if it not going to stay and if people know it will change...... when I felt healthy the first time I decided that I was no longer going to believe in jinxing things by telling people..... by holding back on positive exciting thoughts feelings experiences because I had an idea that it was self righteous to share that..... I learned that I was going to share the positive confidently openly.... that it would not make things change because I was being cocky. I did learn it..... today it a great day..... I can't understand it but things today are going my way...... and putting that out to the world is not going to take it away from me but wow I sure do need it to continue in this direction.

Wednesday, July 14, 2010

My Address

Not sure why it is start getting used with the wrong zip code but I am posting the dorchester address again as I posted it last time so that it will hopefully get corrected

30 Welles Ave #3
Dorchester, MA 02124

things seem to be getting to me but for some reason some people are using 02121... that is not correct.

Monday, July 12, 2010

Trying to set the world record for the largest alive liver

The doctor believed me when I saw him today..... yes my liver is in fact larger and in worse shape than it was three weeks ago when we started......

why when three weeks ago i thought we should try the chemical that we originally had so much success with I didn't force the issue. I was scared... it is a shitty side effect chemo..... it takes a long time to administer..... i wanted to hope that something different was less scary and maybe i would keep my hair and maybe it would work without so much side effects...... but i knew, I, my whole I, knew that we should try to old one..... maybe the cells that have regrown are the ones that will not die from the chemo... maybe they are super cells.... i could find out that my knowing didn't know either.... at which point they will just offer one different chemical after another until I am dead..... so if it is going to work it ought work fast and soon.....

today the ibuprofen is not really working so well.... i cant fucking take this anymore..... i am so sick of feeling some level of shit. i don't feel like it is time to die but i don't know how to live..... will i know if that time comes.....? would it just happen peacefully? please body, please just make a decision an learn how to heal yourself.... i hear that you know how...... find it..... i don't want this to be an every few months game....figure it out and take

ouch..... i hurt.... i am uncomfortable..... i thought this was going to be a quick heal.... its not and i don't know what to do......

just be, right...... this is very boring and uncomfortable......

how do i know what a natural death looks like.... clearly i wasnt ready because i chose again to try chemo.... in fact, it is my last hope and i am putting hopes in it the way i did not before. but a natural death would have come before the very first procedure.... getting the stent put in..... i guess when it comes down to it it i am not going for natural...... so what does it look like when it is not natural...... i think they are ugly and full of morphine..... fuck..... i dont think that is how death shoudl look...... okay life..... figure this shit out.

Sunday, July 11, 2010

Up and Down I want Balanced Up

In the last few days things got very hard. Eating became not a possibility and even I didn't want to eat (which is on the small scale anyway but still I love eating and thinking about being able to eat normally again). My liver hurt. It seemed bigger than it was pre chemo..... felt like any shrinkage I had felt after chemo seemed to become undone and maybe even gotten bigger. I felt like I needed to be doing chemo every other week not every two weeks. I can'tbelieve that I am looking forward to more chemo..... crazy..... It feels like life and close are so close together. When I am in pain and cant get comfortable, cant sleep, cant eat..... my desire to live. I no longer though feel like I know if I am dying or living. I really thought it would be clear when I would know when my path was on dying and when it was on living. Even when I thought.... wow, I cant deal with this and my body is starting to not able to hold its slight gain on the tumors, I still didn't know if this was what it feels like to be dying. I do not want to die at this point. I want to find a way to live with a quality of life that makes me find worthiness to my life. I have found ways finally to accept a quality of life that was before unacceptable. Now I can find some positives even when I am week and cant really do much. I do not however accept pain.

My mom and Nathan suggested Ibuprofen. I finally tried it..... it is pretty much my new savior. It really helps. I was like a new person when I kept it flowing through my body every four hours. I could chat with Nathan, talk with Sharon on the Phone, eat, watch a movie, enjoy the rain outside. This will get me hopefully through today again.... I woke up feeling okay but pretty much as soon as I move it starts getting uncomfortable. I can tell that soon I will take more ibuprofen. Is this chemo going to become more functional... will it learn how to work as what seems to have been helped by the first chemo last year? How much was that chemo and how much tong ren...... at this point I am loosing my faith in Tong Ren..... fast an furious. So for now that leaves me to trust the chemo and really really hope and use my mind to get this one shrinking the big ass tumors.

I can't believe how happy I am that the Ibuprofen seemed to work. I do not want to use oxycodon or morphine it makes me crazy, doesn't really help the pain that much, makes me puke, and get totally constipated...... I feared there was nothing that could help me to something that would help me get back into my threshold of pain tolerance. Thankfully for now.... there is an answer that is not too bad for my body......

I want so much still to have my body back.... where I can get some muscles again, be able to go for walks, better yet bike rides and yoga, better yet play and play and play....

Thursday, July 8, 2010

Drugs For a Good Time

Wow, Nathan asked if I looked at the post I wrote once I already took sleeping medicine. He showed me what I wrote and it eve got me to laugh. I guess that drug used to make a friend who took it get up in the middle of night and eat delicious things without remembering that. Its probably good that this doesn't happen to me because I would hurt a lot if I ate as much as I want to eat and on top of it if I ate from the drug. Pretty funny to blog under the influence of the sleep drug. Makes me thing that maybe ti should become a pastime. It is giving me a little laugh which is great for me as much as possible.

Wednesday, July 7, 2010

Release from Crying

TonightI needed to be challengeg. It kept getting stuck..... I decided to call my dad..... i got it out.... it was helpful to get it out. for the most partet was helpful. Right now I am about t crash because I am drugged out by the sleep drug..... it is kicking in..... i feel calmer.... the crying was very useful....

Could even have a normal conversation with Nathan... thinking about ideas that will keep our sanity..... maybe i will get enough be able to bake a rock and we could learn the ropes to visiing farmets markets. Make freinds. Maybe connect with other cooops..... Feel good enough to hang with Rebecca and Suzanne. So dlose......things are looking better. slowly.... someday I want a big fad ice cream and some fried chicken....

okay cooked off now.

How Do I Keep Going

There were some days that were better. I slept finally... using drugs but finally it worked. Two nights of 8 hours of sleep. Helps a lot.

How do I get myself through each day. How do I have fun. Dont feel well enough for many options. My mind is not allowing reading. Tried to play the fiddle didnt really work. So hungry but food only works in small bits and it is very easy to eat enough to feel bad. I dont know what my life will look like from minute to minute. My body, hard to tell what it is trying to do. Somepeople seem to think that it is all my own causing of this. That healing comes from my mind.... that my mind has created the cancer.... that it is all my fault. That is a lot of weight to hold.

For a few minutes on most days I can imagine being healthy. Imagine going places and finding fun things to do. Being home in Missouri, fisiting Portland, visiting Colorado or wherever Daniel might be, traveling some with Nathan, etc..... Sometimes I feel how joyful I felt before....only a few minutes..... mostly I cant understand how I can get through anything with a body that is not working how it is supposed to work. How it not working it could end.... yet it feels both close and far from the end. The continuing is not much fun though.

I am sad that I do not feel that I believe in the tong ren thing.... I believed so much before..... I see some people dong well.... I also see others who are not doing better..... why am I in the doing worse category..... why cant I believe..... how do I find healers.... how to I figure out how to get to where my mind, myself, is healing me......

my parents seem to want to answers to be hopefully coming from doctors..... there is a little from there but not much...... today I heard some pressure to just start believing in the doctors and do whatever he says...... they dont have much hope either..... they dont know either.....

how do I feel good enough that I can be ont he move.... i feel like I need to be on the move...... fill myself with womderful times and places and people..... find away to heal myself..... how how..... if this is not going to heal then I wish that it would end sooner rather than later...... why so slow..... how the fuck.... how how how..... in the moments when I can find some hope, some health, some image..... the image is so wonderful..... I wish I could just get into a stupor filled with only images of wonderful fun things......

why? WHY? What the fuck..... so, sad.....

I got the ability to garden a bit yesterday..... it was nice.... to be outside... feeling well enough to do a little..... so little and so much..... such a small existence..... I think if I feel a bit more better, maybe maybe I will find some way to feel hope..... believe..... desire to make it better.

Monday, July 5, 2010

Not Going Well

Seemed like things were going better, each a little better each day. Starting to be able to eat some and not feel horible etc..... as with things are changing faster than I can deal for the last three days seems like my liver is not doing well again. At first I tried to tell myself it was just the way it hurt more as things were healing.... now I think I need to be getting chemo more frequently..... damn it....

i have been feeling more need to find some new crazy healing.... i dont know what it is.... so much to write about it but feeling crap again..... i wish I coudl just eat again.... i am so hungry....

Health Update not by me

If you want updates about my health Nathan is keeping updated because he is now living with me and helping me a lot.

If you are interested in that update update him at this email and with that subject.
subject: Getting Tamar Updates

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.

Monday, May 31, 2010

How Many

Sometimes people ask me how many people follow this blog. I am able to see that at least 61 people do but frequently people tell me that they do but are not subscribed. I also don't know the difference between when people sign up for email alerts and when they are a follower of the blog.

If you understand the difference please let me know what it is.

Also, if you are not a follower but are reading it will you drop me a quick email to let me know so that I can more accurately answer people when they ask me.


Post Feminist Identity

Are we in the post-feminist era yet?

For the last few years I have been contemplating what being a man means to my friends who are men. What masculinity means. Especially in relation to post feminism, if we are in fact there. I find this subject fascinating. There is a class at the Rowe conference center that is on this very topic and I think it is only for men and I think I am not healthy enough to prioritize such a thing anyway but so interesting to me....

One of the things that friends have been reflecting to me in relation to how I have changed since this journey began is that I seem softer, smaller, more feminine. Recently this got me thinking... I have been looking to learn more about men and masculinity but when I turn the question towards myself in relation to woman and femininity I really don't have an answer. I feel what my friends are talking about. I feel my desire to embrace the softer side of me, the feminine. At the same time I have little idea what that means.....

Friends.... what does it mean to you to be a woman... to be feminine?

Do I Have To Feel LIke Shit To Feel Like Shit?

The last few days I have not been feeling very well. Its nothing compared to November that for sure. When I try to talk to Tom about it he frequently makes reference to how I dragged myself (sometimes he says I was carried in) into his office last year. Its true.... that was horrible. This is not horrible but I still feel bad. My plan is for it to not get horrible but it feel so on edge. I keep wanting Tom to have more to say. One time he will say vegas nerve right side, one time he will say blocked vessel, one time he will say sometimes it takes a while, one time he will say 6 new pancreatic cancer patients come yesterday. I know he cares and is concerned for my well being but damn.... I want the answer and I want it Why am I awake writing right now when I have a 7am appointment with Tom. Because I stayed in bed until noon today and now I am awake and my abdomen is hard and full and uncomfortable....

The times when I feel comfortable I do not take it for granted.... I do however tend to be so excited for my energy that I blow it all and then kind of crash the next day.

I am still thankful that I can get myself to the garden and water the plants, even though they look horrible in general. I am thankful that I can still get myself places even if it means driving. I am still thankful that I don't feel the way I did in November. I am still thankful to all of the people pouring energy towards me to help me. I am tired of this though.

Saturday, May 29, 2010

The magic

The magic is still happening, around me, including me. It is present a lot and I feel it a lot. That however doesn't make my acceptance of this path completely smooth. Last week was a hard week. I felt like my health was definitely one notch in the direction away from health and after about three or for days of this my mood could not stay positive. I felt doubt, despair, fear, and anger creeping in. I felt my imagination closing. Thoughts of fun in the future hid. On top of this my parents felt scared and thought that there was something I could give them to do to help ease their minds some. This was a struggle because one of the things they requested was more updates from me about how I was feeling. I specifically needed to focus less on the microcosm that is inside my body. I needed to analyze what was going on inside less to keep my sanity and spirits up. I needed my parents to focus on their pain and suffering and believe me when I told them that they were doing a lot for me, that I would tell them if there were changes in my health, that the best thing they could do for me was to take care of themselves, to face their fears and suffering. I felt resentful that my dad responded to my blog saying very clearly that he was not going to respect my desire to not have to talk about how I am doing as often. I felt resentful that my mom suggested that my not being as communicative as they would like was the cause of their imaginations going wild with all of the negative possibilities that could be going on. The last thing I needed was to have to take care of me and take care of them. So, once again I learned the lesson of boundary setting.

I have notoriously had trouble setting boundaries with people who I love. I think I may have also had trouble respecting boundaries from people who I loved. Both of these things are things I have been learning over the past few years but setting boundaries has become a really clear necessity in the last 9 months through this crazy-ass out of my control, what the fuck, why me, there must be easier ways to learn, thought it was over but here it is again, blessing of a really hard journey.

So after a few emails back and forth I did it. I set a strong and clear boundary. So far it has led to me feeling more connected with my mom. She seems to really be trying to look inward at her needs and to be reaching out to get support that will nurture her and help her grow. It is amazing how quickly an acceptance of my boundary eases my being enough that I feel more able to give the thing that the boundary was holding in the first place. Boundaries..... such great things much of the time.

I was fearing that I would not feel well for Jakes graduation. Fearing that yet another thing I had planned to do would come and go and my health would get in the way.... to my surprise I started feeling better and better once Sharon and Rachel got back from North Carolina and throughout the whole weekend. I am so happy that I was able to eat somewhat comfortably and to feel up for playing catch with the frisbee and balancing or trying to on Jennifer's slackline. I loved connecting with the family, loved getting more time with my cousins who over the past year or two I have been feeling more and more connection with. Sharon and Rachel and I stopped at Warren Falls on the way home. It was as beautiful as I remembered it even though it was not sunny by the time we got there. It also felt somehow healing to be alive to be in the place where I first started feeling the pain last August.

Lynne visited me at Sharon's house. I really enjoyed connecting with her. Really nice to see her so healthy and to be healthy enough to visit with her.

Been having some great connections with friends in Northampton area again, still.

So the magic is here and around me..... I wish that my liver was healing faster than it seems to be healing.

Two days ago I met a seemingly larger than life really fun man who is a friend of Lea's. We went out t eat with him. He is a great story teller and it worked perfectly for me because I wasn't feeling great or up for talking. Enormous black gay man with a lot of life history and fun interior design skills and a wonderfully soulful musician.

Yesterday I had a transformative guinea pig class with Hilary and Eleanor...I slept on he couch in Hilary's office while they broadcast on the internet. I woke up feeling physically and emotionally renewed. Then we spent about an hour and a half or more talking. I felt wonderfully blessed at the opportunity to spend time with two people who represent very different stages of life than where I am at and to feel a deep sense of shared appreciation and respect for the places in life where we each are at. Very healing for me.

Add to that some Monica magic and it was a great day yesterday.

Today Lea took me to the beach. It was nice. She joined me for some chi gong. I definitely understand why people like to practice chi gong on the beach. For some of the time I left my consciousness of body.

After the beach I didn't feel that well. I fele relaxed about it though because my story is that there was so much healing going on in my liver yesterday that today it is having to heal the holes left by disappearing tumors. As Nathan said to me earlier this year.... I would rather be happy than right. In this case I am going to hold that I feel happy and right.

Tuesday, May 18, 2010

Healing is a tricky thing

For the last few days I have not been feeling as well. Lower energy, more pressure in my abdomen, less fun to eat (although my appetite is still big). One of the hardest things about feeling a little worse is that it makes others more concerned.... then I am around that energy also which totally understandable but doesn't feel like where I want to be. Mostly I am able to stay in an observer role. Oh, look at that.... things don't feel as good. It is hard for me to have to explain the details of why it feels worse over and over. I tell my healers, then my parents want to know, then whoever else..... it is hard to just witness it when I feel pressure to be able to describe it..... healing takes time and is not linear. If I microanalyse each change I cannot see the larger picture. I wish it was enough to just say, I feel a little better or i feel a little worse.

I saw Tom today. I felt better afterwards..... before my treatment though he asked me if I want to learn something. I said yes even though I was actually feeling pretty shitty and wasn't sure I did want to learn.... well, I knew I wanted to learn, I just wished that I felt better physically while I was doing it. Turns out that I was able to pull my energy together and feel better.... Tom brought me into the a room where he was working on someone and told me to rub her neck where he showed me..... she was clearly in a lot of pain from it and I was barely touching her. I knew this feeling well. He asked if I could feel it.... I didn't know what I was supposed to be able to feel. He said it was like a bump..... i mostly felt a depression..... i told him that and he tried to show me again... I couldn't really feel anything or rather I didn't know what it would feel like if it was not blocked. His response..... more tai chi. A few things happened for me though.... one is that I realized just how lightly i needed to touch and just how painful it was for the woman. I remember that time well. It takes a lot more now to get that kind of response from me. Another is that it was hard for me to cause her so much pain and see her trying to hold back tears. Another is that I got super super hot, immediately perspiring, and I felt a lot better than I had when I walked in. Another interesting thing is that it turns out that the woman had pancreatic cancer and had found out about Tom via a coworker who passed on my moms information. Basically she was sitting there in Toms office because she heard about my story...... i felt a little awkward because there I was giving hope to this woman and her sister by virtue of being alive and looking good while my body is crying out again for some more healing. It was much easier when I felt completely healed to have people look to me for hope.

I feel somewhat better after the treatment. Some more energy. less focused on the pain.


Getting lots of energy my way again. It is very helpful.

If you respond to this blog and want it to be anonymous thats great. If you want me to know who you are please at least put a first name. I realize that out of context initials can be tricky, fun puzzle but I am not so good at it. Also if you are an anonymous user and want me to know who you are remember that it only tells me anonymous not who you are. Also, remember that you might share a name with someone else, so if you want to be sure that I know who you are something more than your first name might be necessary (although mostly I can figure it out from first name).

Thanks for the energy.....

Thursday, May 13, 2010

Do You Think You are Beautiful?

It has been an interesting road back to loving my body. There was a short period on the way down the weight scale where I enjoyed my body. Well, sort of.... take away the discomfort every time I ate and the fear that tumors were taking over my body and the depression etc.... I enjoyed when I weighed about 140. Clothing started to fit in a way I have not experienced for a long time.... not because I was wearing the wrong size but rather because my body was more like the kind of body that clothing is made for. I still had my hair which was still for some reason thick and shiny. I started to feel more flexible when I did yoga and I had not yet started hurting myself when my knees would touch or when I sat on a hard surface. Aside from all the shit that was going on, there was some part of me that noted that I always wanted to know what it was like to be a skinny person.... did clothing really fit better like it looks like it does, are certain movements easier.... the answer for me is yes..... things felt better, aside from all that felt worse. Then I got skinny, and greyish, and my hair started falling out... my ribs looked really weird.... in general things looked weird.... it was like my shoulders were too small for my ribcage. My butt disappeared. My mom told me I have Safta's butt, which she now denies but she did and I think that means a flat ass. It was weird to not have a butt. My cheeks were sunken in and my eyes bulged. No I did not feel beautiful.

Once I could eat again, I ate all the time and I knew that stabilizing my weight would be challenging. Funny, it seems that I would have just appreciated being alive.... but no, I really got to see the depth to which the self consciousness has its hold on me. I quickly grew out of size 4 (a size I cannot ever remember wearing even when I was not an adult yet) pretty much skipped size 6, left the great pare of jeans that I got from April (size 8), and got back to my normal, size 10.... only then even they were too tight on me. My hair was growing in but it was still patchy, the shape of my body was not a body I knew. Overall there was a lack of muscle but my abdomen was distended in a weird way. Instead of feeling alive and healthy I struggled with feeling heavy and weak.... no I didn't feel beautiful.

It wasn't until my hair started being long enough to do funky things, like the tamohawk (photo to come) that I could on occasion look in the mirror and think "I am beautiful" again. It was rare but at least it existed. I still struggled at that point though because I also realized that I had no style. I put clothes on and looked in the mirror and I thought "am I a boy or a girl." Where did that come from. My style had become commune chic over the last 9 years and well... not only did I not have those clothes with me, but mostly they are unreliable at this point.... i sure miss my black and white dress which at this point rips every time I wear it..... same dress I once wore to Dana and Eds wedding. Who am I..... A short while after I moved to Northampton and started bicycling places I regained a little muscle tone and lost a couple of pounds and my body shape was more or less back to normal, minus muscle. I noticed that frequently I would look in the mirror and be pleased by what I saw. I am enjoying that my hair has a slight wave to it....its not curly like I hoped but its pretty fun. I had just started feeling thankful for the return of my sense of satisfaction with myself when I spent some time with Daniel..... he asked "do you think you are beautiful?" The process of answering this question, of verbalizing the process, helped me seal the fact that I once again thought I was beautiful, that I was self accepting on the physical level, that I felt more like me again, that it is not about what others think but more importantly it is about what i think about myself.

Public Nature of this Blog

So for many months now I have been contemplating the public nature of this blog and how it affects my writing. When I first started the blog it was intended to both keep everyone who wants to be updated up to date but it also served as my journal. I felt deeply committed to writing freely without censoring myself for fear of hurting someones feelings of worrying what people would think of me. I got a lot of positive feedback on my writing and I think that the uncensored nature of it was part of what people liked. I think that part of the reason that I was so able to write that way is that I thought I was going to die. Why not share it all when it wont matter soon enough? It is not entirely the reason I could do it though. In general I do not feel that I have anything to hide. I love it when people read to me from their journals and I feel open about open in fact that this blog was my only journal about this journey until recently.

I have found myself becoming more self conscious about what I am writing. I recognize that there are things that involved other people and it is not for me to choose if I should out them. Or I neglect to write about someone who has been important in my journey and they feel bad or left out. Or I feel confused and find myself scared that if I write the full story about what is going on it becomes harder to change my mind as I get more clarity. Or recently I have felt like there are some things that feel more sacred and personal to me and I want to keep them to myself.

I feel stuck because I really value the uncensored writing that I was doing at first. It feels more true to me and who I am. It helps me accept myself even when I have judgements about my thoughts or behaviors. I feel scared of the repercussions of my writings because I do not think that I have the energy to work through misunderstandings or hurt feelings that might come of it.

Okay so here is an example of something that has been coming up for me that I have been avoiding writing in this venue. I have a lot of judgment on myself for feeling the way I am about to describe......

I have been feeling sad and disconnected from Dancing Rabbit, Sandhill, and Red Earth. When I got news of my livers newest antics, I wrote an email letting the communities know that I had some new challenging news. I got a few strongly supportive responses right away with a few more trickling over the next week. I feel very thankful for that. When I first got sick and for a long time I felt held by some individuals but also I felt very strongly held by the communities as a whole. I got constant reminders that people were thinking of me and sending me energy and missing me etc. This was super super helpful to my process. This time there was just not much response. I know that it is the busy season and that gardens, buildings, plans for the future, visitors, work exchangers, etc are full swing and that I have been gone for a long time now. I wish that I felt that same kind of strong supportive energy still coming from the place I call home. I wonder, is the news too shocking and painful to let in? are people really too busy to send a quick email? do people think my telepathy has gotten strong enough that I just know? is it obvious? do I seem calm enough and strong enough to go it without the support? do people feel upset because I never wrote the blog post that I meant to write about how helpful it was to have constant reminders that people are thinking of me and sending energy? do people feel helpless? have I been gone long enough that I am just not in peoples consciousness? have they moved on to the point that I don't have a place there?

I know that I am cared for and that I do still have a place at Dancing Rabbit. My strength in this knowing falters sometimes. I feel angry with myself that I wish I was getting something that I am not and not just being happy with what I am getting. I feel weak that I am not able to just know without reassurance that I matter. I feel scared about what this blog post might bring up for people. I wish I could just ask for what I want without making up so many potential stories.

Then there are things that I feel hesitant to write about because I feel shy. For example, I feel shy to tell you about the magical meetup with someone from my past. Maybe I feel shy because our first go at connection ended in me thinking that I was a poor judge of character and I really want to be an accurate judge of character.... okay not really I wish that I didn't judge character.... maybe it would be more accurate to say that I wish that I spent my energy in relationships that feed me and continue to feed me. Point is, when I was still in Northampton I went with Ashley (another sort of magical reconnection during my short time in Northampton) to see a strawbale house that was going up. Turns out that one of the balers was Daniel, someone I had met online in 2008. I had pretty much tried unsuccessfully to write him out of my consciousness because I felt hurt and frustrated when I had extended a trip to MA for passover to go visit him in VT. At the last minute he decided that he couldn't do it and didn't really have much explanation. This is one of my least favorite behaviors. It turned out that extended the trip was a great thing though because then I was in MA when Yochanan died and I could attend the funeral without having to turn around right after getting home to come back for it. Anyway..... after a brief moment of freaking out, heart pounding, what would I say to this person... I climbed the ladder and said hello. My fears almost instantly dissipated as we fell easily into conversation. We had the chance to spend a little time together before I left and I have been really enjoying our connection.

Why should I feel shy to write about this....? I don't know, it doesn't make that much sense given that I really really love connecting with people. I think it might be one of the most important things to me. Why shouldn't I celebrate when I have an easy connection with someone?

Another thing that I noticed over time in writing this blog is that at first I wrote in journal style.... I was really writing for me, to me. Now I am so conscious of my audience that I am writing to you. I even say, you?

I have come to accept that the blogging process is an evolution too..... just like the evolution of the cells in my liver.