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......