Monday, March 15, 2010

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'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,

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