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.

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.

Autumn

My sister and mom made autumn olive fruit leather. Yum. It is pretty much my idea of the perfect fruit leather. I hope that it retains its super food status when it has been cooked and dried.

I went for a walk today and found concord grapes growing wild where I do not remember any growing as a kid...but I wouldn't have known. My mom and sister went for a walk today and found autumn olives growing all over the place. I love free food on the street. Maybe Milford will be the next Portland. (that's a joke Portland lovers, I hope I didn't insult Portland)

Today I played the violin twice. That's a big change from looking at the case and thinking "no way."

Today a spiritual healer/counselor and her partner who also does that work came to the house to meet with me and my parents. I haven't talked to my dad about it but he was a great sport and it seems like he might have had some openness to it. Even if its not the thing for him I feel thankful that he tried. I think me and my mom got a lot out of our time with them.

Sometimes I wonder if it is disappointing to you when I write in the blog but it is really nothing profound. I try to remember that even though I am getting so much appreciation for writing it that I am really writing it for me and that I don't need to perform. I definitely feel the perfectionist in me trying to creep out and make it a pressure situation in which I need to write for my audience and it better be good. Oh yet another opportunity for growth.

Life is so much easier when I feel good (that term is relative these days).

I hope my mom doesn't get ear cancer for all the time she is spending on the phone finding healers for me and making appointments and talking to friends and family. Ahhh, who am I to think that anything clearly relates to getting cancer?

My dad bought something to give me electric shock therapy. I am going to try it soon. I like to call it the zapper but its not really what it is called. Also it is not really electric shock therapy.

I have been really appreciating my dad. Things are settling in and he is really hearing me when I say I need something. He didn't even seem to get upset when I got pissed at him this morning for knocking on the door. We came easily to an understanding that I need to be able to know I wont get interrupted in sleep or meditation or whatever. Tonight he is taking a break at the Lee House (needs a more compelling and fun name, any suggestions). I think that it is a really good call on his part for the sustainability of this venture. I think when my parents said that they wanted me to live closer to them they didn't quite mean in their house with them. They are seeming to adjust to having a needy child back home way better than I think I ever would.

I think I may be skinny enough to have stopped menstruating. Its only a few days late so I cant tell yet. I asked Safta once what they did about menstruating in the concentration camps. She said she stopped menstruating from malnutrition. I wondered at the time if that will ever happen to me.

I finally read a book. First one since I got sick (I know I could also say first one for years some years but not this one). It is one Ronit suggested and I ate it up called "Death is of Vital Importance On life, death, and life after death." I don't have a fear of dying (I don't know why but I never did, which might be why I used to hate angsty teenage conversations about the meaning of life) and this book really helped me think about death but I think it might be even more profound for someone who is scared of death or a loved one dying. Thanks Ronit.

NOT FUNNY.... okay so i am holding back on making any cancer or death jokes because so far every time I do it is a conversation killer and the person I am talking to looks like they are going to puke. I guess I am the only one who is really ready to joke about it...well maybe except my sister who told me tonight that I should go to the Northampton Center for Special Problems or suggested that her pet sitting friend (who sounds like a person I would really love) could make me part of he per rounds "I take care of Lucy, Bobo, and Tamar." And when I told her that I had just recently stopped thinking that I have a shitty immune system but now I should rethink that she reminded me that my system isn't shitty its just different, special if you will. Maybe I should try out a direct cancer joke and see if she is ready...... mmm... no. I like the lightness though. Maybe I will be well enough soon to see Lucia who I imagine will be a great stand in for Aurelia in light making. For now, Sharon is doing a great job of it.

I feel a little guilty when people help me do things that I really cant do right now but that I always hate doing. Like packing or unpacking or organizing or cleaning up. There is a part of me that thinks...is this really okay because when I lie there feeling shitty about those things it really isn't that different from how I feel when i am doing them. What if this is all a ploy to see if I can get people to do those things for me. And they sure do a better job than I ever do. What if I get so spoiled in this cancer thing that some part of me holds onto the cancer so that I never have to clean my room again. Hopefully I will suddenly appreciate being able to do things like clean my room and will suddenly learn that I like it.

Feeling better

Today was a much better day. Pretty much like I felt at DR. I still can't remember what it feels like to feel totally great but I will take what I got today for now.

I am now convinced that I was basically malnourished. I have been eating chicken for the last two days and again today and the change is drastic.

This does not discount the stress of change but I think this one was mostly physiological.

Tired

I have been super exhausted/lethargic for the past few days. I am thinking that I need to make changes in my diet and am starting to do that. Hopefully things will change.

I recognize that I am responding even less to email and offers to visit. Please know that everything anyone has written or said to me has been great. I know it is challenging to know what to say or how to act. Please just trust yourself because everything that is coming in has been great and even if I don't respond I am appreciating it. I hope you will not give up on me because of my lack of response.

For those in MA. I too want to see you. For now I am really not taking visitors... my days have been full with appointments and eating and taking baths and sleeping. I am not up for visits yet but know that I am not ignoring you and that hopefully I will have more energy soon.

As I expected, I would be doing some more turning inward in MA. It feels true.

I had a great massage last night and some super relaxing acupuncture today....both practitioners happened to be left handed... maybe I will choose my care team based on their handedness.

For those who were with me before my departure to come to MA. Yes, I think that if you were to compare my health right now with what you saw it would be considered more severe. Mostly I am staying in the moment and watching what is and trying not to compare.

Thanks everyone for your continued, most amazing support. Every bit has an effect so try not to doubt yourselves.

T

Who Knew

So the person formerly known as Tamar who shared 3 cars with 50 other people, didn't have a cell phone, and generally stayed away from drugs...is now the cell phone wearing, SUV driving, narcotics enjoying friend of the future.

When I figure out how to use the cell phone maybe I will give you the number.... but then you might want me to answer it so....maybe not.

Tonight I got some body work done by an osteopath. It was nice but not immediately profound. When I got home I decided to take pain medication to take the last edge of pain off and give myself a break for the night. I was talking on the phone with my sister and increasingly talking about how I felt rally good and tingly and that I think that the visit with the osteopath was kicking in. I was smiling and acting much more like myself..... when my sister reminded me that I had taken pain medication and I was simply high. Uh oh...what if I like this stuff too much? Oh how nice it is to feel mostly pain free.

As far as the car goes, well, I haven't actually driven it yet and I have to admit it is nice and will be nice on winter roads but it is hard to go from sharing a car with so many others and generally not driving much to being in the car a lot in an SUV that is one car to one person. In my experience Milford without a car is pretty much my idea of hell so if an SUV is my choice, I'll take it.

An email from my dad

This is an early email from my father. This was prior to my asking for things not to be set in battle terms. He has been super respectful of my request. I think this email is super cute.

Hi TamTam

It was good to hear that you are feeling better had a sushi meal without pain. It is good start and we were happy to hear it. Just for the fun of it and stress relief

I am preparing for having the fight of our life to get you back to your own self so we are doing the following:

I got my horse in shape, sharpened my sword, and exercised many hours a day. Mom is daunting her Mogen David outfit (Jewish red cross) . and by the time you get here we will be all ready. Sharon and Rachel will be our foot soldiers and we will win the battle

Just to give you an idea what we look like here are the pictures:

Dad with his battle outfit

Mom with her equipment to assist in case of injury

Sharon in battle outfit

Rachel in battle outfit

And the last but not least our fearless Tamar

So get ready TamTam

An early email to my family

Hey there Family,

I have been thinking about you lots as I know you have been me. I know that you have been getting kept well updated by my mom so here are some thoughts I haven't really shared yet.

I am sure we have all reviewed our year and cannot really understand or make sense of any of it. I guess maybe we needed more practice grieving. Something I have been thinking about is how the current situation with my health might overshadow the fact that I think we are all still grieving about the loss of Sue. Three things about that, 1. I hope that this doesn't cut short the full grieving process that we have only just really begun in relation to Sue and 2. That Jonah and Jake and their main supporters are still receiving any attention and support that they might be needing and 3. Jonah and Jake that you still know that we are all there for you and have energy to support you as you might need even though there is a fair amount of energy being distracted from that (I make an assumption here feel free to correct me if I am wrong).

In general I have been thinking and feeling that this whole thing has been much much harder for those who love me than for me. I have come to realize a number of things. I have been pretty much preparing for this all year and maybe for a few years. Not knowingly of course or I would have warned you all that there was another big one coming your way, but rather in my life choices. I purposely left myself open this year to experience life, to accept adventure as it came, to find out who I am and what I need to feel good and whole. Starting out my year with helping at a traumatic birth followed two days later by the loss of Sue helped me know that the freedom in my schedule was exactly as it needed to be. My heart was torn open and out came joy and gratitude (along with the suffering and sadness and grief). I spent time this year exploring things that I had decided were things that I couldn't do well for one reason or another like writing, singing, being an artist, playing the violin without self judgment, enjoying alone time, etc. Just before I got the diagnosis I was thinking about how happy I am that I made my year what it is and how much I have learned..... acceptance, mindfulness, self-love, a lightening of spirit, openness, listening to my heart more, etc.... I was noticing how loved and supported I feel in my community, how much love I have for our family, enjoying my garden and all that surrounds me.

At this point I feel prepared to receive this adventure too. For me right now I mostly am connected with the only path that seems available to me which is that of an exciting journey on the edge of life that brings about a feeling like when I bite into a homegrown asian pear.....sweet and super juicy, a little bit of sour overtones, sometimes some gristle but overall I am always amazed when I bite into them at how one fruit can hold so much sensation. Each bite is as exciting as the bite before (this is always how I feel not just now that I have cancer). This year was the first year that my asian pear tree bared fruit (they are not as good as the ones I am describing that come from a skyhouse tree but still pretty good). I am not delusional, I recognize that there is another possibility on this path and that is death. The thing is I realize that death if it comes is not so much about me as it is about you, the people who love me and who will feel the pain. I recognize that there could be some level of pain for me before death and yes that is scary but having never experienced death or severe physical pain I have nothing to go on it is a kind of empty thought process. It provides a lesson in recognizing how fear plays into pain. I am working on noticing when my pain is just fear and dealing with the fear so that the pain just becomes another sensation. At this point none of the pain has been that bad in itself, it is more the fear of "what if it doesn't subside ever before it gets worse." The point is thinking about death is just way less juicy than thinking about life and healing and the human body and the experiment which is me and my mind and my body. When I was a kid I had a conventional pediatrician who helped me heal a wart on my hand using only my mind. I thank him for this because at a young age I learned about the power of the mind and have been using it and honing it ever since. In the last few years it has become lazy and I am spending a lot of time these days relearning it, finding out what it looks like as an adult.

In general I do not see this as a battle or a fight, those words feel aggressive to me and do not help me feel loving towards my body...even towards the cancer which is actually made up of my body also. I am looking for words which connect to the seriousness of the situation without invoking aggression to describe this healing journey. So far that is the only request I have...please when you are talking about it try to stay away from words that invoke aggression. By all means if you are feeling aggression in relation to all this please let it out, go out and kick something or break something or whatever works for you, but when it comes to my journey please find loving and peaceful words......if you have ideas for words that capture the intensity and also the healing please share with me...

I am feeling so much love coming from yall. I have limited energy to keep in direct contact (you wouldn't believe how much email I am getting, three days to stardom....want my autograph) because I am in general prioritizing Sharon and my parents right now. It has been hard for all of us to not have seen each other yet. It probably good that they didn't see my in my full yellow glory because it was kind of scary. It will be better now that I have dropped my fake Mediterranean glow.... back to European skin tones. I imagine that once my immediate family is together it will free up some time for more personal contact.

Hey Jake. I am still holding on to your birthday present awaiting an address to send it to..... Whats your address.

I love you all

T

Catching this blog up to the beginningish

I am going to attempt to catch this blog up since it didn't start at the beginning. If anyone knows how to backdate entries so that they appear in their proper sequence please let me know.

Sketches: experiments with anger, fear, and rage

The following are what came out on first pass with trying to release anger fear and rage that was getting stuck inside of me. The combination of this exercise and the information that my parents are willing to get help dealing with the intense emotions that are existing for them and settling in in MA with their amazing support, love, and care has led to more ease in my life.

Please keep in mind that all of this is from a place of my rage not from a balanced calm empathetic place.....


"Hello liver are you still home?"
You seem to have lost your supple form.
A tight little ball with a laced leather cover
The storm has passed, its safe out here
If you would just loosen you laces
So I can hold you and rock you and celebrate you

Okay, I hear you and I fear
you are correct, its not really safe
I will send my love then to you in your leather covered ball
Hold on then my love until we find our way

I am trying to listen to what you have to say
but the reception is fuzzy
i cant hear so well today




I cradle my liver

Your eyes wide
Pupils Dilated
Glazed
Crazed

The three people
In this world who
Love you the most

Are speaking to
you but you
Cant hear them

This is familiar
territory
Only this time
Our fear is not
disabling
we revolt

You submit and
Get into the back
Seat

But the damage is
done, again.

I cradle my liver




I have compassion for you
Scared, Hurt, Shameful, Mortal
I love you
But
I have become a mother
Fiercely protecting my
wounded organs because
no longer does their
tough skin cut it
I have become a healer
opening the door for
the knotted clenched
organs to find their
supple nature
You told me we would
do anything
whatever it takes
I am the healer
You will just follow
So why, when I say
I want to drive the
car away from my
home to start my
journey, to feel
empowered to take
myself away, to
feel some amount of
control amidst the
crazy new events in
my life
does it become about you
again

why after 31 years
am i sitting in this
car again, clenching
my whole body
"protecting my liver"
while you sit next to
me, in a rage, blaming
everyone else, unwilling
to respond to my
advances to try to
hear you, understand you
help you express you
emotions and get support
from the very people
who
love you the most

Why do you tell me
that you hate being
watched and then
you watch us like
a hawk
Do you think it is
safer to have a
driver who is
fearing when the
next bark will come
who is scared to
"mess up" because
only you can make
mistakes

Why when the favor
is returned like you
asked for can you
not take it

why after 31 years
of this did I let
it happen again
when I am
the fierce
mother healer



trying to convince
my liver that
the world is safe
its time to unfurl
your knotted tendrils
to open and stretch
to make space for
healing

you will do whatever
it takes to help
me heal
you say
but the
one thing I want
from you is
something you are
too scared to do?




I have not given
you permission
to yell at me
or the other
people who
love you



8 years of crafting
my fine tools to
help me remember
that I cannot
change you, I can
only change me...
finding compassion....
empathy...

And I still cannot
experience the
wrath of your pain
and shame without
hurting myself




You said you understood
You said you would
Find a different way

I feel angry, hurt
Frustrated, disappointed,
Ashamed, and embarrassed
Because now, in the
presence of my
mortality I believed
you. I put myself
in harms way, again.
I strayed from my
healing path. I lost
sight of that which
is most important to
me
Right Now




Maybe this is part
of the Healing Path
Maybe putting myself
In the Same childhood
Situations but having
Different reactions
Is Healing
Maybe it hurts and
I don't want the healing
to Hurt



Do you think that
tiny apology will do
when it comes with
no clear message that
you understand what you
are apologizing for and
when it happens again
today?



There are so many things
I value about
you
Father
But the way
you express your
pain, frustration,
anger, shame, fear
and whatever,
I can only guess
is NOT one of them




What I want from you is....
self awareness about your emotions
I want you to ask me if I
am available to witness your yelling and frustration
and I want "no" to be an acceptable answer
I want you to ask for what you need and
explain what is going on for you
I want you to listen when three people are
telling you that you are out of control and
not making sense and consider
asking for help
I want you to refrain from most of your
comments about other peoples driving
so that when there is real danger
the driver will listen to you
I want you to find a way to express
the full range of your emotions
and be supported in doing so
I want you to see that you cannot protect
me from life
but you can protect me from
you.



I am like rubber
whatever you say
bounces off me and....
dissipates into the
universe.
If only this
felt true....




My organs
have become
the most
sensitive instrument
of emotional
pressure




This part of the journey hurts
I hope I can get through it
Before you love me to death




I don't think
that oxycodon
can ease
this kind
of pain



Arthur, why
do you let this
go on for so
long
Isn't 25 years
enough?


Arthur you
are not serving
her needs
she is scared
to leave you
because you
are known
Doesn't that
tell you something?



Arthur, I
expect more
from you.
Let her go
You have done
all you can
and you are
no longer able
to help
what is in it
for you
she is still
suffering and
you are helping
that cycle
continue



Arthur, she
can't even
imagine that
there is anything
else out there.
You know there is
Help her find it



Arthur, she
is paralyzed
by fear
Can you see it?



25 fucking years
Arthur
What the fuck?

The Trip to MA

So the travel back to MA was challenging. The most challenging part was dynamics with my father. In general in the past 2 years I have been learning to appreciate parts of my father that I had not appreciated before. I started to understand more of where is outbursts of seeming rage and anger were coming from. We have been able to have more conversations about our emotions and we have been having fun doing projects together.

In fact I had been planning to write him a letter about how much I had been appreciating him and our growing understanding of one another. When I got the message on my answering machine from my mom to call her back immediately when Sue died and the phone was ringing which seemed like forever, I felt convinced that she was going to tell me the my dad had a heart attack and died this time. I immediately felt regret that I hadn't written this letter to him before he died. When it did not turn out to be my dad who died I promised myself that I would write that letter. I still haven't.

Anyway, clearly my parents have been under extreme stress. My father seems to pride himself on being a problem solver. On this journey, there are no solutions that are in his control. It has been a huge huge thing for him to realize and become humbled to the ways of nature.

Anyway, back to the car trip, there were a few times when my dad slipped into patterns that I cannot handle. My whole life these patterns have resulted in me internalizing the emotions and holding them in my digestive system. I don't think that now after all the personal growth work that I have been doing that it was that much different. One difference is that my mom, sister, and I all respond differently than we did when I was a kid. Instead of just going to fear and trying to disappear, or responding in ways the exacerbate the problem, my mom learned that there is pretty much nothing she can say that will help the issue and so silence is a better option, my sister can raise the energy to match my father and use some of his tactics back on him, I tried to use my best non-violent communication but also am in the now powerful position of being bale to just say, "No, this has to stop immediately," and can get some piece of that to happen.

The point is, is was super hard. Everyone is aware of how stress and cancer are best friends and this led to a lot of pressure on people who are already in a lot of distress.

The morning after we arrived in MA, my mom told me that she and my father have decided that they really do need to get some help to deal with their emotions. If this is true and they really do find help it will be the answer to my biggest wish throughout this process.

The following post will be an exercise in releasing fury, anger, and pain in a way I have not done much before....writing. I imagine it might be hard for my father to read. Keep in mind that things seem to be going better and have some promise and that I think he is doing his best now. Fury, and anger have notoriously been hard emotions for me to express.

Perfect 10

Last night was the hardest night yet. The pain was a 10. Now I know what they were looking for when they asked me that. The pain medication took a long time to kick in because as it turns out my stomach was full of food still hours after I ate.

My parents had to witness me moaning and groaning in my efforts to deal with the pain. In addition to add to their feelings of helplessness, when I am in this state I seem to prefer to be alone.

My self diagnosis..... the stent is blocking the pancreas from being able to release its business into the small intestine. It pretty much feels like something is going to explode when this happens. I sure hope that my self diagnosis is wrong.

I had all sorts of plans for what I would do this week.... go to the Ibex tent sale which I have wanted to go to for years, go to Melany's to get some acupuncture, go to Boston to see Cecil's band play...... I am pretty sure none of this will happen.

I am feeling sad and scared. Being able to eat feels like the key to living in this. When eating becomes a dreaded activity I find it hard to stay optimistic.