Back on Pain Meds

So much to catch up on but I feel like this now bleerhsjdnfsd ,mnflksdnabsdf,mcvnsdfnfdgviurhgsjhdbdhdb.....blubblubblub

Ouch

So I have decided to give up completely on the pain killers offered by my doctor..... they pretty much kill the pain and then make way more pain.... I believe they were blocking my ability to heal....

What that means is that yesterday and last night sucked..... alot.... I have never experienced such intense and long lasting pain... the hardest part was not knowing when and if it would dissipate. My 1pm acupuncture appointment couldn't come soon enough.... Thankfully it helped a lot. Now I am feeling markedly better which is still far from how I would like to be feeling.

Ouch....

Cancer Jokes....I couldn't resist

From Lynne.....Because she can laugh at cancer jokes

There is so much love in this world

Wow, I have people who I have never even met or spoken to offering to drive hours to pick up breastmilk for me. My idea of what community means has expanded 100 fold. This idea just continues to feel more and more powerful. Move over pharmaceutical companies, we are about to show you where its at!

The Sickly Hypochondriac

When I woke became conscious of the fact that I wasn't sleeping at 4 this morning I realized that I was in bed thinking about my relationship to my overall state of health. Growing up I was the "sickly" one in the family. I am not sure how much I just took this on having heard about how my childhood milk protein allergy affected my family or if I was actually told that I was the sickly one. I remember hearing that the doctors told my parents when they finally diagnosed the milk allergy that it would affect my life by making me get sick a little more often than normal kids. It seemed validated by the fact that I was sick a lot and my sister was barely ever sick. I was the one who got pneumonia twice as a kid and once as a young adult, bronchitis many times, pink eye, mono, asthma, allergies.... It was me who caused family trips to be canceled or postponed because I was sick. I knew every breed of dog because I frequently got sick right when the American Kennel club was having its annual show that was televised (okay there might have been other reasons that I knew every breed of dog). A few years ago at a time when I was feeling particularly self-conscious in general, Sara called me a hypochondriac. This hit me pretty hard and I think I might still be working through it. In addition to feeling like my immune system pretty much sucked now I had to consider that I might be making it all up. It made it hard for me to listen to my body because I didn't want to be a hypochondriac. Twice now when my parents and I have gone to Dana Farber Hospital my dad reminds me how when I was little and had a milk allergy he used to walk me on a certain sidewalk and I puked all over the place. Also my parents talk about when we used to come to children's hospital.

This is a post I started the other day when I was feeling down.... I am not feeling this way right now but the point is....I was feeling down on my immune system.... on the fact that my parents are revisiting things we had to do when I was 16 months old.... because of my immune system....

I am feeling more positive today about my immune system. It is what it i and I do not feel the need to judge its adequacy. I feel able to accept it and nurture it again.

Breastmilk Team

I have decided that breastmilk is a go. I have four amazing women on my breastmilk team. Its like the breastmilk dream team. Even if they actually fake me out and send me ricemilk I think it will be imbued with so much love that it will be magical.

I don't suppose any of you are driving from the St. Albans or Burlington, VT area to MA in the next few weeks and want to be a breastmilk pony express are you?

Some Photos

Whacking Plastic Dolls With Pointed Metal Hammers

On Saturday Sharon (someday I will learn how to make that dang accent mark especially now that I have a friend named Sharon) and I went to a Tong Ren healing session. It came right after the visit to Dana Farber where I felt confident that when I walked out of there they took out their betting pool sheet and placed bets on how long I would live. Sharon dropped me off and went to find parking. I walked into a small crowded foyer of a brick building. Without words I knew I was in the right place because of the various people in wheelchairs, and with head coverings but also because there was a clear consciousness. Everyone was aware of each others presence and of trying to make sure that each person was getting what they needed in terms of space int he crowd. They also all smiled at me when I walked in. When the elevator was unlocked we went upstairs to a big room with chairs set up. I sat down and Sharon joined me. After a brief introduction, mostly for Sharon and I because I think we were the only newbies...also we were the youngest folk by at least 10 years in one case but mostly by 20 years so we stood out. The guy leading it was just an average guy...made his living in the past as a musician but changed to doing Tong Ren 7 days a week when his wife got cancer. He started in. Many of the people in the class held the same style plastic anatomical doll with numbers and letters written on it and pointed metal hammers as the leader. The first person was called on to say what he wanted worked on.... "I have a brain tumor, double vision, etc" and then they went to work whacking the dolls. The leader called out points and some of the people in the class followed and some just whacked wherever they wanted on their dolls.... after a few minutes..."How are you feeling" the same, I don't feel anything.... "do you feel relaxed" "yes".... and on to the next person....mostly people said they didn't feel much, some felt heat, some felt some shift....

I sat there wondering.... how did I end up in this place where I would have to announce my diagnosis like the way people make fun of support group meetings "My name is Tamar and I have pancreatic cancer that has spread to my liver etc..." I was pretty sure that I am not ready for that kind of support group. As it was each persons turn I tried so hard to feel something. Clearly people believe in this, how come I couldn't even feel anything when it wasn't focused on me... surely I should be able to feel something. I wondered what Sharon was thinking.... we haven't done a whole lot of woo woo stuff together so we don't really know each others woo threshold. When they got to me... I announced myself in full support group form and they went to work.... pretty quickly one quadrant of my body got hot and I felt my head needing to turn to the left strongly....then things shifted,....I could breathe a little better and deeper.... the pain moved to the left where it had not been.... my stent didn't feel so irritated...the heat grew to cover most of my left side and then my whole abdomen... the pain shifted to be lower.....I felt energized and hot..... "How are you feeling"...." good, hot, whoa.... "

This is whacked out shit but I am sold it felt strong..... Since then I have participated in two telephone conference calls of the same thing.... not so powerful but I will still give it a chance.... I think I am kind of attached to having such a huge amount of sensation..... oh attachment...here you are again.

Give me a plastic doll and a sharp hammer.

If nothing else, it felt like they wanted me to live.... they seemed psyched that I was there and seemed convinced that I don't have to die now. What a difference.

What I Have Been Waiting For

So it is finally here. The piece that I have been waiting for. The part where it finally hits that there is shit going on in my body and I have to be conscious of it at all time.... well maybe I don't have to be but I cant stop yet and when I do I get the Alfred the Alligator song stuck in my head for hours on end when I cant sleep. I am thankful that although it is coming after a really hard night and the aftermath that seems to have on my well being the next day, today's acupuncture and tong ren and warm jack-o-lantern lit bath with new music mix playing have made it possible for me to actually cry. It doesn't seem to be making me hurt more but I am scared it will. Until now it has mostly hurt to much to cry fully. It feel so good to be able to tonight.

Right now I feel tired of all this cancer business. I don't know how to find the path that feels good and there are so many options. I can barely make it to the end of the street when I go for walks and I have to sit down to take breaks at that. Meditation escapes me and I am having trouble not being hard on myself for not being able to find it....everyone says how important it is. I am scared to go to bed because of the part when I wake up in the middle of the night and cant sleep and don't want to take more medicine because I feel drugged already and want a break from that. What if I don't want to try to live then I have to find the path to die. Since I don't feel like my body is imminently ready to shut down that path is hard too. I think it is easier to die though. I sure would eat a lot of crappy food. Pumpkin cheesecake for one. The cheesy biscuits at Red Lobster which I didn't even know existed until I was not supposed to be eating things like that when we stopped there on our drive home. Maybe I would even get a Big Mac.... maybe I would fly to California to eat it with Jeffrey. I am sure that novelty would ware off quickly.... what then.... then I would load up on oxycodone...maybe I would even find out if there are better, more fun pain killers out there and get a prescription for them.... afterall I think I could get anything I want.....I would definitely go eat lots of sushi which is out for the time being.... Thats not a very long list of things I would do if I was trying to die. I feel kind of boring... why don't I have more things that I would want to do if I was going to die.... I guess in this fantasy I still feel crappy so going to Ecuador, building a natural building for Melany's acupuncture office, visiting Panya, taking fiddle lessons, etc..... are still out of the question....

I feel ready to know the road. I have been trying to find the directions on mapquest all night but it doesn't seem to know the address.... Living Through Cancer. If I have learned nothing else this year I did learn that I feel so much better when I finally make decisions between things that want to take up the same space. I guess it doesn't really matter what I decide, as long as I decide it and go for it for a while and give myself a break from considering other things. As long as I believe that it will work...

I am so scared that I will have to go through times that seem inevitable for people with cancer of working so hard and feeling so shitty and finding out that things are worse and that they are not going to get better for quite some time or ever. How do I weather that storm? How will I know when to give up? Sometimes I feel confident that I do not need to live any longer because from what everyone tells me I have already made a big enough impact on the world (funny how easy it is to turn positive feedback into something it was probably not intended to be).

Why, even though I know this is a great space to be in, alone in my childhood room, well taken care of, feeling despair and being able to release that emotion, do I feel so resistant to it? I know so much that it is right and I even want more of it but it has passed now yet I feel scared of it. I know that opening myself to these emotions too is the path to healing and maybe healing is not synonymous with living.

WHAT?

Holy shit. What did I just write. I accepted a test that I have no understanding of what it will show and what the purpose of having this information is. I thought I would never do this and I wont. Thankfully I have time before it was scheduled and I can cancel it.

I cant believe that I said yes when I have no concept of why.

I was reading a book written in the 80's which is turning out to be a great next book to the last one I read. Its called Love, Medicine, and Miracles. In it he describes a patient who refused to leave her room for x-rays until they would explain to her why they were doing it. I thought.... that woman is like me, or I am like that woman.... then it hit me.... no I am not.... I am going to have a procedure where they shoot me up yet again with radioactive material and I don't even know why.....

I guess there was a reason that the $1.99 used book jumped out at Miss Lindsey. It was more than the dramatic scalpel and the rose on the front cover.