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.

Breastmilk

I just got a suggestion that I am seriously thinking about. It made me cry which is a sign to me that it might be potent. Maybe it is just the idea of my friends producing something that could sustain my life with their bodies and more than that offering it to me.

Breastmilk.... its like liquid gold for babies..... what about for me?

I think I am going to explore this idea more.

Western Medicine

Finally the appointment at Dana Farber has come and gone. The importance of this appointment to my parents was clear to me but not something that I could really understand. I guess there is something to hearing straight from the doctors mouth that it is cancer and that they are not really thinking that there is anything they can offer. I have already heard it. I was able to gauge the professional reputation of the hospital I was working with in Columbia. They were not. For a brief moment I think I understood when we heard basically the same information that we already got what my parents might have needed out of this appointment.

There is some potential new information. The doctor, who was a young woman with a mild manner and who seemed to know her shit so I felt generally comfortable with her, suggested that the cancer might be a little more aggressive than originally thought. There are more tissue samples they want to look at which didn't come in the first batch of what was sent. I didn't really understand what she was saying but something to the effect of these tumors seem to be poorly differentiated and thus moderate to high grade. The grade has to do with how much cell division and death is occurring. What this means is that the tumors are messy looking and active.... There is more that they need to do though before they say this for sure. All this means that they might try to offer me conventional chemotherapy if it is what poorly differentiated and high grade or they might be able to offer things in clinical trials if it is lower grade or more differentiated.....

The whole feel of the hospital was different than when I meet with alternative practitioners of one kind or another. In the hospital I felt uncomfortable because I got the impression that the doctor and nurse basically assume that I am going to die in a couple of years and everything between now and then is just to make it closer to a few years than a few months. There is a lot of focus around taking the pain away and very little focus on overcoming the odds. It seemed all about facts and statistics. I wonder what it is like to go into work everyday and get news that more of your patients are dead. I think one common natural response to this is to distance oneself from emotion. People become statistic and facts. I become a statistic when I enter the hospital.

Some things I have been reading suggest giving your doctors hugs. I really buy that. I have not yet been able to do it though. I feel uncomfortable because I worry that it would challenge their feeling of professional boundaries. THat it would feel awkward. It is my goal that if I start seeing a doctor more regularly I am going to hug them. ... All.

On hugging.... I saw my pediatrician who taught me how to use my mind to change things in my body because he was waiting for a massage after mine. We had such a nice heart felt hug and a great chat. So warm and open. I felt really happy to be able to thank him in person for giving me that gift so early in life when it just seemed matter of fact. He seemed genuinely interested in me and my well being.... maybe I could have a pediatrician as my primary care doctor, he did say he was back in the area. It was fun to notice that as a kid when I was hiding behind chairs to avoid getting vaccinations (which for some reason seemed like I got a lot of them) he seemed like a very big tall man. Huge even. I now know that he is my height and very average stature. It was fun to be able to access my kid eyes for a moment and notice the difference with my adult perception.

I feel so thankful to my sister who has always stepped up to defend me when the need was there for the ways in which she is stepping up big time on this one. Two nights before the appointment she called and checked in about how I was feeling about it. We discovered that I was sort of disconnected about it because I was worried about how it would go with my parents. I still hadn't made a list of questions to ask even though I wanted to and I hadn't even considered finding support from a friend outside of my parents for the visit even though I am super aware of how wonderful it was to have support from friends in the Columbia hospital. Sharon helped me see the full potential of what the stress could be like and become much more prepared. It was really nice to have Rebecca there to take notes and better yet to lighten my mood and help me be less involved with whatever was going on for my parents. It was great to have a list of questions because I wouldn't have remembered anything I wanted to ask. It even ended up being okay to have my parents in the room with me during the appointment. I feel more comfortable that if chemotherapy is offered my dad understands the full implications of what that could mean and might really support me in wanting to work fully for a while with alternatives to see what effect they have before considering the chemicals. We were in agreement that the doctor listed only a few of the possible side effects of chemotherapy and that there are most likely more.

I did accept a little more radioactivity going into my body in the form of an octriatide test. I think this will help them see if the cancer is in more parts of my body.... It will apparently give a little more information to the diagnosis. Why? I am not really sure. I don't really like being in the hospital, I feel like they are planning on me dying soon and that feels uncomfortable to me. Everyone was super nice but it is a sad place. I don't even think it would be okay to bring flowers and give them to people in the waiting rooms because there are people there whose immune systems have been blasted away and it could be detrimental to their health. I feel so thankful for when i accompanied Lynne to the place where she got treatments. She was so cheery and outgoing and didn't seem to let the gloom state get to her and she left a trace of cheer in her path.
I now understand why when I tell people that I have cancer, most people have a response of oh, when my (put relative in here) had cancer..... the hospital was packed. Cancer is all the rage now, everyone is doing it.

I have not yet been approved for Mass Health but it seems like it will be no problem. I am sort of floored by how easy the process seems like it will be. Already they let me fill a prescription as though I was approved and the person I was working with told me the best way to get the best coverage and exactly how to do it. It seems like it might be really great coverage for the western portion of things.

I was hoping that because Dana Farber has a whole section of integrative health stuff that their accupuncture and massage would be covered by Mass Health. Alas, no insurance covers it. It is good because then I wont feel like I have to drive all the way to Boston to get those treatments but it sure would have been nice to get them for free. I know, don't worry about the money.... for the most part I think i am doing a good job with this but truth is I would like to live long enough that maybe my money will run out and it would be nice to make it last a bit.

So the second opinion is in, guess what...its cancer. i gave some blood and urine to a study about this kind of cancer.... maybe they will find out if there are any genetic markers for this one.

I have successfully started on 5 of the supplements to full dose. I think I have only two left to incorporate. Of course they are the ones with the highest likelihood of problems but I feel ready. I have given in a bit to the pain medication (I felt like I could have gotten anything I wanted from the doctor today as she was all about, just wanting to keep me out of pain) and am taking them more regularly before bed and sometimes during the day. I think it is okay. I got the one that i supposed to be less harmful to the immune system according to the naturopath but not according to the doctor. I will see what that can do for me because if it is true or not about the immune system, if I believe it then it works for me. I think this is all about believing.

Pills

Pills Pills Everywhere
Lots of Pills Everywhere
Pills are everywhere

Today I went to the Naturopath. I was planning on letting him go from my health team. It turns out that in person he was much more attentive. He seemed to listen. He answered my questions. He responded to my telling him that the diet wasn't really working with a new diet that will definitely work better and a suggestion for a cookbook to buy. He explained the results of my blood tests.... Had some high growth factors and some depressed immune system stuff. Gave me more pills, took me off some of the others. The new set includes the active chemical in turmeric, niacin, and Coenzyme Q10 all of these things are things I have been thinking about....now I feel more on the same page with him. Also he gave a recommendation for a pain medication that does not suppress the immune system or have side effects that need to be treated with another chemical the way oxycodon does.Hopefully the oncologists will prescribe it for me on Friday when I see them. I do not think I will stick to the timing of his regimen, that is to say I will probably go a little long before the next blood test. For now though it feels good.

I also consulted with two energy healers. I got different things from each. All helpful. The second one, a midwife friend of my sisters friend was super intense. She is not going to let me get away with any shit or any laziness in relating to my healing process. There is no riding on all the praise I have been getting for how I have been dealing with this whole thing with her..... she seems ready to push me to deeper and deeper levels.... and this wasn't even an official appointment with her. I got off the phone and proceeded to decompress by watching television and binging on sugary goodness (there are cookies hidden all over this house, I cant believe this was my first binge...hopefully I will self "medicate" like that again). Probably she didn't intend for that to be my reaction but I apparently had to enjoy a little self destruction in order to become prepared for the depth that she had to offer. I just want this healing thing to be easy..... living is like a full time job these days. And how do I convince myself that I don't just want to take the narcotic that I am on right now which makes me feel great and have amazing healing visualizations and feel like writing and have some connection with he me I know better...... Its not every day that moms get all smiley and excited when they see you taking narcotics.... my mom loves it....she hugs me and gives me a kiss when I do it...I think it is nice for her to see that I am still in here somewhere... It gives her ease, we can smile and laugh together. She likes to know that I am not in pain and giving myself a break.... it is definitely becoming harder to convince myself not to do it. Maybe this is the part of my journey where i learn to empathize with people who have addictions.