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.
Sunday, August 29, 2010
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.
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
nice
Especially I am worried that I might be ousted by
THE GREENFIELD DOLLAR
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)
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
nice
Especially I am worried that I might be ousted by
THE GREENFIELD DOLLAR
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.
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
AHHHHHHHH
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.....
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?
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?
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