Joyful Blood

Sunday night (3/21/10) my body is finally menstruating again after 6 months of not. This was one of the final pieces of health that I have been waiting for..... and it is here. Gloriously here. Yippee.

My Kind of Jews

The other night I went to B'nai Or with my parents. I felt excited to attend a service because the descriptions of them sounded like something I would like.... even Sharon has liked services with them. There was a part of me though that doubted... how could it possibly be that different from what I grew up with which was far from anything that I can connect with.

The people of B'nai Or have been very supportive to me and my family throughout this journey. When I was trying to figure out how to get breast milk from Vermont they even offered to drive and get it (all but one of these people I had never even met).

I went to a guinea pig class in Boston the other night. When Tom got to them and asked them how they heard about it the answer was from Eva Friedner and her daughter Tamar..... I had never met these people before in my life. It turns out that they are from B'nai Or and felt inspired by my story.

Anyway.... I felt so drawn in by the service. There was live band, lots of singing, and chairs set up in a tight horseshoe. The Rabbi played a fairly small role in things, stood in front of everyone without hiding behind a podium, sat in the same chairs as everyone else, and wore jeans and a button down shirt. Every time a suggestion was made of what to do it was always followed by an offer that if that doesn't work then do what works for you. Stand up or do whatever works best for you for silent prayer for example. I appreciated the high value I felt was placed on listening to oneself and being true to where one is at in that moment. During the service people were standing and sitting, dancing and not dancing, moving and being still. Everything was accepted.

That night there was a small ceremony honoring one woman for a sort of right of passage as a respected elder woman in the community. I have never even heard of such a thing in the religion. The ceremony was lead by women and the woman who was the center of attention seemed to be mostly comfortable in that position because of the love and connection she was receiving.

Another thing I noticed was that there were a lot of women in their 50's and 60's who let their hair be its natural color, all variations on grey. It struck me that so many woman in this age group dye their hair that I rarely am surrounded by woman showing their natural aging process. I felt fulfilled by this in a sort of primal way. It was as if I was part of a tribe and for most of my life most of the woman in one age group left the tribe for some reason and then all of a sudden things changed and those woman came back. I felt more complete, connected, comfortable. I felt connected to being surrounded by elders, people with life experience. I hadn't realized how much being surrounded by woman who dye their hair has at some level left me feeling a lack of connection with elder even when I am surrounded by "elders." The visual cue is apparently more important for me than I realized.

I finally met people who had been sending energy my way for the last 6 months. Their concern and love felt deep and strong. I feel very happy that my parents have found this community. My connection with Jew would be very different had I been raised with this as the model. I am excited to have learned that this is possible and exists... maybe someday I will pursue it further.

Health

I am healthy now. This walk was amazingly delightful. We returned to a place where we had hiked a few years ago when I was healthy and it never would have crossed our minds that it might have been the last time we would hike there. The sun was shining, ground still covered with snow, the air was warm and smelled like spring. Glorious day. We hiked, we cried, we hugged, we did qi gong, we threw snowballs at trees, we sang, we ate, and we connected with the preciousness of life and each other. Oh, also we vowed to dress like twins whenever possible.

Nathan and the Fam

This is a photo from when Nathan was visiting. (posed because my dad wanted to bring photos to Israel with him). This documents a time when my body was feeling great, my weight was back to normal but my spirit was still finding its way back to me. Prior to the last scan, which brought me to the place of considering myself cancer free and on the serious path to discovering healing, I was still struggling emotionally. The great hand of depression had loosened its grip but I still felt sullen a lot of the time. Despair, despair, despair..... how would I continue with my life, what if I get the scan and things are worse, whats next, whats now..... racing mind.
This is also the time when I started being able to feel nature again. Lying in the snow, skiing under the sunny blue skies, winter time delight. I wasn't just looking at it anymore, knowing that I used to think it was beautiful, I could feel it again. Also this is when meditation came back to me as a tool, and chi gong started feeling powerful.
I feel deep gratitude for the friendship and support I got from Nathan during this time.

Monica's Artwork

This is an example of Monica's artwork on my back. Believe it or not it not only doesn't hurt but feels really great. The photo on the left are temporary marks left from fire cupping and the marks on the right are temporary marks left from gua sha. Monica has been working on my body and mind since I first saw Tom. She even came to my house once when I was in too much pain to travel.
The first time Monica did gua sha on my body it was a joyous occasion. Every part of me knew that it was what my body needed. There was a glimmer of hope amidst the pain, fear, and disconnection from my body. The idea behind running a dull edge across the skin (gently) is that it increases circulation and releases stagnation and blockage from the tissues underneath. It is pretty amazing to watch how only certain places that are scraped end up with these marks. Some places show almost nothing while others gets deep maroon.
Fire cupping also feel pretty powerful. I just had it done yesterday and it was quite painful. As soon as the cups were released my headache went away and has been gone ever since. Also whats not to like about someone holding a flaming cotton ball over me and sticking beautiful glass cups to my back.
I so appreciate the place that Monica has held in my healing team. I think I have become a Monica addict. When I went to DR for two weeks I couldn't wait to see her again. Powerful hands, powerful spirit, healer.

Haircut Number 3

This was right around my birthday and hanukah. Sharon shaved it for me.

Haircut Number 2

This haircut was my attempt at an Ali and Liat. I used to admire Ali and Liat for giving themselves their own haircuts and for doing the messy look so gracefully. In fact I still do admire them.

This was my version of it.... I am not sure if the bald spots added to it or detracted from it.

Alyson's second visit

This is Alyson's second visit.

The following is her update to the community about her first visit....

hi folks,

i saw tamar twice this weekend. here is how it went.

my first morning at my parents' house in vermont i called tamar's parents' house just outside boston. it turned out that they wanted rather urgently for tamar to begin using the gift ted had sent with me--a pipe. no time like the present, we all agreed. so my mother and cole and i packed overnight bags, stopped at a neighbor's house to pick up a little baggie of something to put in the pipe, and headed for milford.

when we arrived at eva and amos's house two and a half hours later, tamar was sleeping. i sat at the kitchen table talking with eva. i placed the gifts on the table, thinking i might not even see tamar awake, preparing myself for that. then who should shamble down the stairs and into the kitchen but the lady herself, looking like a rather wan ballerina. i hugged her a little too tightly. she sat down and we talked about her day, a rough one. i gave her some colorful stones from our cistern hole, which she smiled at and fingered for a few minutes. then she was ready to go back upstairs.

i was preparing to leave when she called down that i was welcome to come up for a little while. i laid sleepy cole down to nap on the couch and my mom talked with eva while i went up to tamar's room.

she was lying on the bed in her childhood room surrounded by pillows. there were cards on her mirror from well-wishers, and small gifts around the window. it did not feel like a sick room, just a place to rest.

i lay down next to her and rubbed her back gently. she was feeling discouraged, not knowing whether she wanted to live or die, not knowing how to do either one. feeling so bad one day and then better the next made it hard for her to know what to do. so many decisions. i told her if she kept on walking she would probably live some and then die, just like all of us. all she had to do was keep walking. i wanted to ease the weight of decisions that she was feeling.

she showed me the port they had inserted on her chest near her left shoulder. she was going to begin receiving nutrition all night long, bypassing her digestive system. this along with the chemo might be a way for her to get a little ahead of the tumors so that she can rebuild strength. and the maryjane might help with the pain. to me it seemed like with the right mindset she could come back for some time and enjoy life a little longer.

she said seeing me made her feel jealous. she wanted to be the one on the mission, not the one the mission was for. i passed on greetings from people at DR, from boone and danielle who are living in her house. she wept a little: "i want to be in my house."

she seemed very fragile. my touch on her back had to be moving, not still, or it felt too heavy to her. if i tipped the bed in the wrong direction she had a hard time remaining comfortable.

i teased her about not cutting her hair yet. she said it hadn't started falling out yet. i said she could still cut it, i could give her a hot haircut, she'd look great with no hair. she told me she didn't want to look like like a cancer patient. "i've got news for you," i said.

"i am one?"

"you already are a cancer patient." the words seemed like they needed to be said. despite everything she is still resisting this. i don't know whether it's possible for any of us to accept this with grace, especially when it happens to us so quickly.

after a while she said she was ready to be done. i asked her whether she thought she might be willing to see me again the next day, if i spent the night in the area. she said probably. "it's good having you here." as we were leaving, the visiting nurse arrived and began instructing her parents how to administer her feedings through the tube.

we spent the night in a nearby hotel amos recommended. in the morning he called to invite us over for breakfast--an uber-hospitable man. we had already eaten but we accepted the invitation to return. when we got to their house they told us she had had a good night. she had eaten an entire piece of toast for breakfast! it was the first she had eaten (and kept down) in weeks. she had even had two bowel movements in the past two days--also for the first time in many days. this was all excellent. best of all she had managed a walk outside with amos in the morning, and had agreed to go with him to their house in the berkshires (an hour's drive) the following day. i went upstairs with cole.

tamar was lying in bed wearing a hat. after a few minutes of cole attempting to turn her room upside down we sent cole down to my mom. when i lay next to tamar she cringed. "you're fragranced!"

"oh no! it's my stupid lip balm."

"no, something else."

"shampoo? i'm so sorry!"

"you smell like toilet cleaner!"

it would have been funny if she had been smiling at all. as it was i apologized and squeezed back against the wall and tried not to move the airways between us. i touched her hand. she drew it away. "cold!" so we just talked and gazed.

she is super sensitive to all scents. "i'm like a pregnant lady." maybe it has to do with her system being cleansed by her long fasting. she was feeling a little better but still "bad." not really in much pain, just bad. the pot had helped a little--she had smoked some that morning. she had gone off her pain medication and had a twinge of pain while we talked. she was planning for a tui na session that morning after i left, by monica in her own room at home, and acupuncture later that day.

she spoke again about not knowing how to die. i tried to reassure her that she didn't need to know how, that it would just come sooner or later. i asked her if she was speaking with anyone about what she wanted done with her house and her things, if death comes soon. she said her sister was handling it, but that she (tamar) had little energy to make those decisions. i said she didn't really have to, that if she didn't really care then she could just let other people make the decisions for her. i asked if she knew what she wanted done with her body when she didn't need it any more. she said she didn't know and couldn't talk about that.

we talked about some more mundane things. we said "i love you." we gazed silently for a few seconds. then she was done, and i went downstairs.

her father is bent on getting her to have some perspective, as in, she can walk and see and speak with her loved ones, just imagine how many people would give anything for that. i think it is good for her to be with her family.

if people want to do something for tamar, i think sending a card or letter might be best. i don't know how much she is on the computer but it isn't much.

i may see tamar again before i come home. if so i will send another report. feel free to pass this on to anyone who may be interested. i don't have many email addresses here with me.

grateful for every day.

see you soon,

alyson

Alyson's email to the community from her second visit.....

...and it was very different from last time.

i made the drive by myself, leaving cole with my parents for the day. when i arrived at tamar's parents' house, tamar and her sister sharon met me at the door. tamar was smiling and laughing, which i had not seen at all the previous week. she had cut her hair (actually her mother and sister had), and it looked great bouncing around her thin face and dramatic eyes. she announced that she would like to go for a walk at a nearby lake, "so it'll be a little drive, if that's all right with you."

i was delighted with the idea, so she went back upstairs to get ready. when she got back down, i was fiddling with some african shakers called kashakas. tamar insisted i hear sharon play them. i handed them over, and she was indeed amazing. then tamar wanted me to teach sharon a little song i know called in-a-ne. within a few minutes the three of us were singing and clapping and giggling and stomping around on the squeaky linoleum floor of the kitchen. i could hardly believe this was the same person i had visited just a week ago.

then tamar said she wanted to drive if i didn't mind. this news made me nearly fall over with joy. i knew that safety-girl tamar would not want to drive unless she felt very confident in her ability. great news. we got into her parents' vast new SUV and hit the road.

she drove us about half an hour to a wooded area along the blackstone river. there we walked and talked for over an hour. tamar was more limber and energetic than i've seen her since her diagnosis. negotiating the wet leaves, large stones, and roots along the path, i slipped and stumbled more than she did. she said she was concentrating on moving more loosely instead of rigidly guarding her body as she had been. she still walks and moves slowly and deliberately, but to the passing dog-walkers i imagine she seemed maybe like someone recovering from the flu and not someone struggling with a deadly illness.

she said that despite feeling much better physically she still feels pretty depressed most of the time. she hasn't been sleeping well, and that's part of it. she removed the feeding tube last night because she felt it was interfering with her sleep. she can't decide whether to go ahead with the second round of chemo next week. on the one hand, it's poison and maybe she has had enough improvement not to need it. on the other hand, it might help even more if she does another round. i shocked myself by telling her i thought intuitively that doing a second round would be a good idea. she told me sharon felt the same way.

i asked her whether she had a sense of what the cancer was offering her, what it had given her. she said she felt a heightened acceptance of other people: "i can accept that my parents are who they are." sometimes she thinks maybe this cancer is the big thing she has to get through to become a great healer, sometimes she thinks maybe she has learned everything she has to learn in this life and now she's done. she recognizes that she cannot know whether either of these is true.

she spoke of her sadness at missing her old beloved life, and of how she tries not to let herself drown in that sorrow.

we stopped on a tiny wooden footbridge and sat down, dangling our feet off the edge. we were over a small lock where the water flowed from one pool to another via a narrow stone canal. she spat into the water, which looked fun, so i did too. i told her i had the sense she was at a doorway from her old life to something else, and it was a tight and uncomfortable doorway. that if she could turn and face where she was coming from, really let herself feel all that sadness and mourn the ending of her old life, then she would be able to turn and step through the doorway. like a birth, how painful that can be for both the birther and the one being born. how it took me a weekend of contractions to let myself feel my sadness at losing the old solitary alyson and to mourn the end of that particular life, crying hard--after which i was able to begin letting my baby out.

i looked down. "hey, your spit is still down there."

tamar followed my gaze. there it was, caught in an eddy just below us. "fascinating."

we turned back toward the car. she told me sharon was doing an amazing job at helping her get back on her feet: giving her daily schedules including yoga and phone calls, preparing to create a will, coaching her on overcoming her exhaustion by looking at the part of it that comes from depression. the looser walking was her suggestion. tamar said she is really feeling all the chi people are sending her. she is switching acupuncturists to one closer to home. there is a tong ren practitioner who is working with her for free because she felt so drawn to her. for her birthday the family is moving her to a larger, brighter room in the house. overall, things are really looking up.

on the drive home she told me that she is starting to feel like having more visitors. if people want to see her, they should just make their plans and then check with her about a specific time period when they will be in the area. i gather ted and sara and aurelia are going to see her next week.

by the time we got home she actually had an appetite for some lunch. we ate hummus and pita bread at her table, discussing the ingredients almost as if we were home in missouri, only more slowly and with every minute glowing.

that was it. i hugged her and headed home to my folks. it's the last time i'll see her on this trip.

blessings from vermont to you,

alyson

Primping

Checking out my new do. The tong ren was starting to kick in or if you prefer t think it was the chemo and I was starting to feel better physically. This was pretty much at my skinniest. Emotionally I was in bad shape.

Hair Cut number 1

Here is mom looking a little too excited about cutting my hair... she always liked it shorter rather than longer.

Despair

Sharon working hard to keep up the hope when I had none.

Nice Lashes

Something that was interesting leading up to the cancer is that for months before I got the diagnosis I was noticing that my eyelashes and eyebrows were particularly full and long. My hair was also thick and shiny. It was weird to be so sick and have such luxurious lashes.

Shit Started Hitting The Fan

My condition started getting worse and worse after I got to MA. I couldn't really eat.

This photo I think was taken before I started chemo and before I was hospitalized.

The autumn was beautiful.... it was weird because I looked at the trees and knew they were beautiful but I couldn't feel it. I did not feel any connection with them. Numb. Depressed. Fear. Pain.

Land Day 2009

This was right before I left DR in October 2009. I feared it would be my last Land Day celebration. Now I don't fear that anymore because I think I will see another one.... and hopefully many more.

The stent that was placed relieved the jaundice which helped me feel boosted for a while.

Check Out my Halloween Constume

This was my last sushi meal until I just ate some with Rebecca and Tom this past weekend. Everyone said that it was not a good idea... I decided that I am healthy enough now that I was going to eat some.

This photo shows how yellow my eyes and skin were.... No this is not tan in a can.

Liver Biopsy

This is the place where they took a biopsy of my liver. Crazy that it was just one little hole because I felt like they were stabbing me over and over like a pin cushion. They did in fact take many pieces but I guess they stayed inside the one hole.

Getting this procedure done was a challenge. The first day they were supposed to do it, got me all prepped, sent me down to the preop room and then.... Tereza, Nathan and I waited and waited and waited until they told us they couldn't do it because the anaesthesia team was not available....wheel me back upstairs.

The next day was a go. They wheeled me down to the room. I think that Sara and maybe Ted and Aurelia had just arrived (they were in town for a the birth of Georgia Rose). When I saw Sara I started crying. Having someone new there, seeing me in that condition, brought up lots of emotions... in fact I am starting to cry right now as I type this. I also realize that I cant remember the order of things very well. Was the Sara, Ted, and Aurelia part the day before.... ? Anyway, as they wheeled me into the elevator a resident stopped us and asked if I was okay and what was wrong... I responded something to the effect.... of yes I am okay as long as it is okay to cry here. What I cant remember is when Sara, Ted, Aurelia, and Alyssa (I think I asked for Bear and Zane to not come in because it was too much for me) spent time with me int he preop room. Regardless one of the times I was in the preop room (I think it was the day before) Aurelia came and sat on me and we played with blowing up gloves and with the bed, television, and light remote control. It was really great for me to have her light, bright energy at such a scary time. She helped calm me and put life into perspective. The simple pleasures of playing with non-latex gloves and pressing buttons. The fact that she didn't seem to really get the severity of the situation was perfect for me.

Anyway, they drugged me up enough that I was already out before I left the preop room. The next thing I remember was waking up and asking Nathan if I was alive and okay... if I had had the stent placed yet and if it went okay.... Just as I asked him this a machine started beeping... his answer was delayed because he feared that the beeping was bad.... but then he assured me I was alive and okay. Is that what it is like to die.... just gone from existence like that....

The doctor came in to talk to us and tell us that it all went well and that they were able to get a piece of my liver while they were in there. I tried to ask him questions to which he responded over and over..... you wont remember anyway.... I pushed until he would be clear with me that they had indeed gotten a piece of my liver..... which was good because....

Then they wheeled me to get the liver biopsy done. In that prep room I realized that I had to urinate.... bad..... I asked the nurses what I was supposed to do about it and they got me a bed pan.... which is something I had never used so I did what seemed totally obvious to me (I was still super loopy from the anaesthesia) I started to get up so I could squat over it... the nurses had no idea what to make of this so left Tereza and Nathan to help me and left the room.

I was wheeled into the next procedure and they got me all lined up in the CT scan machine and drew on me where the biopsy needle would go in. There was some hustle and bustle going on and I suddenly remembered that they had already gotten a piece of my liver in the first procedure. I tried and tried (I thought I was yelling but probably wasn't) to get someone to hear me asking them to stop and check to make sure this procedure was still necessary. I felt more and more frantic as noone seemed to hear me. Finally I decided that I had to find everything in me that could make a sound and yell.... STOP... finally they heard and checked with the doctor.... They still wanted to take a chunk....

By this time I had to urinate again.... they had been giving me so much fluid.... but I was all lined up. The nurses told me I would have to wait..... I told them there was no waiting.... so they said to do what I needed to do..... So I peed..... and peeed.... and peeed.... and peeed... in fact I peed throughout the whole procedure and it felt sooooo gooood. In fact I am sorry that I ever learned not to wet the bed.

By that point I was not feeling very trusting of the team I was working with.... but there was no going back.... I felt that if I didn't have faith in the team they were more likely to mess up.... so I focused like I have never focused before and got into some kind of drugged meditative state, imagining that all was well.... that was the last time I could meditate until a couple of months ago.

After this procedure they wheeled me out and had me in a hallway facing a wall. I couldn't really hear anything but lots of unfamiliar voices and I couldn't see anyone even though I was surrounded by people who love me. Then I heard Aurelia's voice cut through the din.... I cant believe that I cant remember what she said.... the sound of her voice instantly focused me and relaxed me and I knew I was okay and that my people were there with me.