Dear Sharon, Dear Sister,
I sit "meditating" or at least going through the motions, tears streaming down my cheeks, nose running as always when I cry, thinking about you. Appreciating you.
I can still connect with the way I used to see you as a child. There was no one cooler than you. Not even Sam the counselor at camp Nor Easter who we thought was soooo cool. She was cool, but you were still way cooler. I remember watching you at your Bat Mitzvah (of all times given that I now know that noone is cool at their bat mitzvah as it is pretty much a cruel joke to make kids who are going through their most awkward time of development get up in front of a bunch of people and sing in a language that they likely don't even know) thinking how you, my sister, were the most beautiful, interesting, creative person I knew. When you swam across the lakes you seemed invincible, strong, and confident. You were such a rebel, swimming across even though mom and dad told you not to. You were like a superhero coming to my defense when I got in fights with the neighbors. You paved the way in school, giving the teachers ideas that I would be a great student so that sometimes they didn't really notice that I wasn't. I could go on and on....the point is I idolized you and you showed me the way.
Thankfully I have since let you become a real person in my mind rather than an idol. A real person who is every bit as strong, smart, creative, caring, articulate, and talented as I thought you were. Ever since the time when I felt jealous of Marcy because I thought she was taking up the sister space in you, and you listened compassionately to me as I cried to you on the phone while reading the letter I wrote about i,t I feel gratitude that our relationship has become more and more real. I have enjoyed every time we talk or spend time together, realizing that our relationship was becoming more and more the relationship I always wanted with you, sister.
We share a common history and you understand me in ways that noone else can really get. I am in awe that even after so many years of increasing connection I still learn something from each interaction I have with you.
In the last few years I have found myself frequently stopping and feeling gratitude for what I have in you, in us. I think "I have the best sister in the world."
In the midst of dealing with the potential loss of sister, working a full time job, maintaining home and partnership, and supporting frightened parents, you were there for me like a guiding light, grounded and rooted like our maple tree in the front yard. You protected me on our drive home, cooked beautiful nutritious meals for me, organized my stuff and helped bring life to my space....you came every weekend even though I was miserable to be around and could give you nothing.... you pulled me out of bed and got me outside into the fresh air.... you asked me hard questions and illuminated things I couldn't see for myself, and sat with me when I cried in despair.... you played your banjo for me in the hospital and sat around in that miserable place supporting me as you watched me in pain, drugged up, loosing weight, loosing hope... you made schedules for me and encouraged me to live each day as if it was worth more than just passing time.... you found chi gong for yourself and through your excitement about it got me into it.... you even helped clean up my vomit which I know really grosses you out... you smoked pot with me even though it gave us headaches and wasn't much fun.... you cut and shaved my hair, tried to make mobiles even though it is the kind of tedious thing that I like and you do not.... harvested autumn olives and made fruit leather.... you took the brunt of the challenging emotional upheaval in our family..... made room in the compost pile so composting could resume in the household.... and on and on..... you encouraged me to go to the place where it seems that healing became reality. It was you who pushed me to go to see Tom Tam and to try Tong Ren.
All of this you did for me and gave to me, and now I see the toll it has taken on you. Now that we get a break from the fear and grief and there is space for you to breathe, I worry about you. Who is supporting you. I know that Rachel is there for you in so many ways but this has been a crazy ride for her too. Who is pampering you, encouraging you to pamper yourself, helping to make your life a little easier. What kind of support do you need. I feel uncomfortable because I have taken center stage and you feel invisible. I wanted you and Rachel and baby making to take the attention for a while. It wasn't my turn.
How can I celebrate you, my sister, "the best sister in the world."
I love you so much.
I sit here typing this letter to you, tears streaming down my cheeks, nose running, thinking about you, appreciating you.
Friday, February 19, 2010
Whats Next
You have held me through this journey so far. You have helped me find my heart again, find my path. You might have ideas for me now that I feel no limits on what I can do, where I can go.
Please feel free to share ideas you have for me of what I can do next..... or even if you want to share what you would do if you could do anything.....
Thanks
Please feel free to share ideas you have for me of what I can do next..... or even if you want to share what you would do if you could do anything.....
Thanks
Tuesday, February 16, 2010
When a Stranger Speaks My Truth
There is so much here that fills Soul. Soul is part of so much here. Mind is feeling called back as soon as possible. Heart disagrees.
A near stranger suggests that when no option feels like the right one then it is time to wait. Wait and the path will appear. Heart agrees. Heart really agrees. Mind throws a foot stomping tantrum.
With a knotted mess of string Patience is big and present. Wait for something unknown and Patience plays a disappearing act.
Garden is calling. Mind is ready to answer. Sunchokes, salad, asparagus, strawberries, mushrooms..... stomach is on board. Trellises, arbors, fencing, gate posts, bed edges. Heart says not now.
Weight.
Wait.
A near stranger suggests that when no option feels like the right one then it is time to wait. Wait and the path will appear. Heart agrees. Heart really agrees. Mind throws a foot stomping tantrum.
With a knotted mess of string Patience is big and present. Wait for something unknown and Patience plays a disappearing act.
Garden is calling. Mind is ready to answer. Sunchokes, salad, asparagus, strawberries, mushrooms..... stomach is on board. Trellises, arbors, fencing, gate posts, bed edges. Heart says not now.
Weight.
Wait.
Aurelia Magic
She saw the car and the realized that it was me driving. I was headed to the machine shed to park. She couldn't control her excitement and nearly ran in front of the car, Sara ran behind her, arm outstretched, to stop her. Her blue eyes were glowing and her blond curls, free from a hat expressing her will on this frigid afternoon, were as crazy as her excitement. I parked the car, scooped her up in my arms. We hugged and squealed and cooed and nuzzled. She told me how much she missed me and I her.
At dinner Aurelia professed out of the blue "I love Tamar soooo much."
Feeling the love from my friend Aurelia..... and I worried that she would forget me.
At dinner Aurelia professed out of the blue "I love Tamar soooo much."
Feeling the love from my friend Aurelia..... and I worried that she would forget me.
Home
snow that stays white
deep roots
connection
touch
support
humongous snow co with osteoporosis crowned head defying gravity
lentils and rice, homemade garlic pickle, homegrown Missouri lime
wet wet snow covered firewood, not such a fan
skeletons of countertops
cob bench
greenhouse
solar panels on the roof
understanding
living dreams
fiddle duets, didn't think it would ever happen
soul sister
low power, finally some bright candles
chickens in the coop
learning to accept help....mmmm.... not so good at this yet
dry oakwood
stars, lots of them
tri-community potluck
peeing in the snow
winter outhouse, down parka
red tail
Vermont Gold on wolf River
snow covered beds of garlic
health
hot house, no clothes
passive solar
sun
hugs
squeals
triple-decker toboggan ride
no cars
no cell phone reception
weight
wait
deep roots
connection
touch
support
humongous snow co with osteoporosis crowned head defying gravity
lentils and rice, homemade garlic pickle, homegrown Missouri lime
wet wet snow covered firewood, not such a fan
skeletons of countertops
cob bench
greenhouse
solar panels on the roof
understanding
living dreams
fiddle duets, didn't think it would ever happen
soul sister
low power, finally some bright candles
chickens in the coop
learning to accept help....mmmm.... not so good at this yet
dry oakwood
stars, lots of them
tri-community potluck
peeing in the snow
winter outhouse, down parka
red tail
Vermont Gold on wolf River
snow covered beds of garlic
health
hot house, no clothes
passive solar
sun
hugs
squeals
triple-decker toboggan ride
no cars
no cell phone reception
weight
wait
Thursday, February 11, 2010
Tuesday, February 2, 2010
Maya Teacher
I have been thinking about times when Maya taught me about healing. One time in particular when Cecil and Maya and I were headed to Sandhill (Cecil and I on bikes and Maya on foot), Maya lagged behind. When Cecil and I got to the pavement we waited for Maya who after what seemed like a long time showed up with blood streaming down one hind leg.
It turned out to be a fairly significant wound that I decided to try to heal without the help of a vet or sutures. After bringing her home and cleaning the wound it stopped bleeding. Figuring that she would not allow a bandage to stay on her for any amount of time I chose to try to let her go without. After her first outing, she showed up again with a bloody leg. I decided to give the bandage thing a try, carefully using the vetwrap that I had saved for years from some horsey thing I had done to try to do a wrap job that might have some hope of surviving. To my surprise, she allowed the bandage to stay on for a few days. At some point, well before I thought the cut was ready to defend itself against the world of tall grasses and underbrush, Maya decided she was done. I wrapped and rewrapped but she clearly said "I am done and there is nothing you can do about that." It turned out to be exactly the right time and the cut healed beautifully.
I look back to pieces of this journey and note..... when I was getting supplemental nutrition there came a point when I was done. I couldn't stand the idea of continuing. I think this was challenging for my parents because the supplemental nutrition was putting some color back into my face and giving me the beginnings of energy that seemed to indicate moving in a direction towards health. In fact I let myself give in to trying another night of being hooked up to a line headed directly into my chest through a port which was surgically implanted in me. Part way through the night I unhooked myself. It was so clear to me that I was done that I am not sure that I could have stopped myself from unhooking.
Another example is when I wanted to get the port out. The popular opinion among my parents and the nurse was that I should leave it in for a few months "just in case." I let myself become swayed by this for a while. The whole time I felt increasingly worse about having this piece of plastic in my chest that represented a time when I couldn't perform a basic function for sustaining life...eating. Not to mention that although they said after a while I wouldn't feel it, it was still uncomfortable. On one doctors visit I told him I wanted it out. He happily obliged and helped me get an appointment to get it out. Why did I wait when my body was talking to me?
And then there was the stopping of the visiting nurses. I was swayed to let them keep coming to the house or calling because it is a process to start them up again.... and what if......? Why did I wait to stop it. I hated everything about having them come. I hated trying to be "nice" when I felt like shit, when they were taking my vital signs for the fourth time that week, when they were waiting for their super slow computers to start up, or asking me how I was feeling..... It felt so great to finally stop them.... why did I wait?
Sometimes I feel scared because I feel out of touch with my body. I cant hear what it is telling me. I fear that I cant tell when my intuitive self is shouting at me and when my rational self is pressing mute. I am glad that I am noticing that at least sometimes my intuitive self will just shout louder and louder until I listen.
Maya didn't seem to care at all that I thought she should remain wrapped longer, she was not swayed by my opinion because she knew what was best for her.
And then there was the time when she stopped eating or drinking...it wasn't until I gave up on force feeding her that she started eating and drinking on her own. Once again, she knew what she needed and I am guessing she wasn't scared of death.
It turned out to be a fairly significant wound that I decided to try to heal without the help of a vet or sutures. After bringing her home and cleaning the wound it stopped bleeding. Figuring that she would not allow a bandage to stay on her for any amount of time I chose to try to let her go without. After her first outing, she showed up again with a bloody leg. I decided to give the bandage thing a try, carefully using the vetwrap that I had saved for years from some horsey thing I had done to try to do a wrap job that might have some hope of surviving. To my surprise, she allowed the bandage to stay on for a few days. At some point, well before I thought the cut was ready to defend itself against the world of tall grasses and underbrush, Maya decided she was done. I wrapped and rewrapped but she clearly said "I am done and there is nothing you can do about that." It turned out to be exactly the right time and the cut healed beautifully.
I look back to pieces of this journey and note..... when I was getting supplemental nutrition there came a point when I was done. I couldn't stand the idea of continuing. I think this was challenging for my parents because the supplemental nutrition was putting some color back into my face and giving me the beginnings of energy that seemed to indicate moving in a direction towards health. In fact I let myself give in to trying another night of being hooked up to a line headed directly into my chest through a port which was surgically implanted in me. Part way through the night I unhooked myself. It was so clear to me that I was done that I am not sure that I could have stopped myself from unhooking.
Another example is when I wanted to get the port out. The popular opinion among my parents and the nurse was that I should leave it in for a few months "just in case." I let myself become swayed by this for a while. The whole time I felt increasingly worse about having this piece of plastic in my chest that represented a time when I couldn't perform a basic function for sustaining life...eating. Not to mention that although they said after a while I wouldn't feel it, it was still uncomfortable. On one doctors visit I told him I wanted it out. He happily obliged and helped me get an appointment to get it out. Why did I wait when my body was talking to me?
And then there was the stopping of the visiting nurses. I was swayed to let them keep coming to the house or calling because it is a process to start them up again.... and what if......? Why did I wait to stop it. I hated everything about having them come. I hated trying to be "nice" when I felt like shit, when they were taking my vital signs for the fourth time that week, when they were waiting for their super slow computers to start up, or asking me how I was feeling..... It felt so great to finally stop them.... why did I wait?
Sometimes I feel scared because I feel out of touch with my body. I cant hear what it is telling me. I fear that I cant tell when my intuitive self is shouting at me and when my rational self is pressing mute. I am glad that I am noticing that at least sometimes my intuitive self will just shout louder and louder until I listen.
Maya didn't seem to care at all that I thought she should remain wrapped longer, she was not swayed by my opinion because she knew what was best for her.
And then there was the time when she stopped eating or drinking...it wasn't until I gave up on force feeding her that she started eating and drinking on her own. Once again, she knew what she needed and I am guessing she wasn't scared of death.
I wouldn't recommend chemo for you anyway
After much deliberating, crying, fear, anxiety, confusion, etc. I decided to get the CT scan done. It helps me to have a plan. After meeting with Quang and doing four days (two cookings) of the super potent smelling (ie. very stinky) tea I decided to hold of on the tea (with help rationalizing stopping from Eleanor) and get the scan. This way if things have changed either way I would have some idea of what was causing the change. The plan was that if the tumors are the same or smaller I would continue with what I am currently doing but if they were bigger I would turn to Quang. I knew I needed the reassurance of having a next step if I was going to be sure not to turn back to chemo which my body was saying NOOOOOO to even though the side effects did not see to be nearly as bad as I feared they would be or as they are for some people.
The night before the scan I started getting a cold. Although this brought up some feelings about being physically unwell from when I was a few months ago but was too depressed to really feel, I think it served me. I was mostly too preoccupied with feeling sick to pay much attention to the fear and anxiety that I was feeling about the scan. I went to the hospital with Nathan as support (dad to come later) feeling very inward, subdued, numb, and it turns out feverish. The scan was at 2 and I would see the doctor theoretically at 3 but realistically more like 4. For the scan they put in an IV line to put contrast into my veins. After having been a pincushion for the last 5 months it was the first time that it both hurt a fair amount and left bruising. It makes me feel grateful for all of the really skilled blood takers I have come across on this journey.
After the scan, I asked the technician to see the results. Although she cannot say anything about what she sees she was willing to give me a tour through the images of the inside of my body, telling me what was what in terms of organs, bones, etc. By this point I pretty much know what is what...I was looking for tumors.... which I saw. I could tell that things did not look significantly worse which eased my mind some. I could also tell that there were definitely still tumors. This narrowed the extent of my anxiety to somewhere between not the worst possible outcome and not the best possible outcome.
As expected it was nearly four until we saw the doctor (even so I still didn't finish the hat I was knitting and am so close to finishing). He came in and tried to make small talk. My dad impressively was able to shoot a little shit with him, asking him how his ski trip was..... When the doctor asked me how I was all I could respond was "that depends on what you have to tell me." With a big smile on his face he assured me that he likes what he sees. I tried then for a brief moment to shoot some shit with him, to no avail....show me the pictures.....
As he walked us through the comparison of the last scan and the new scan we could all see that each tumor or tumor cluster except maybe one was smaller or gone. Where there had been three for example there were now two and they were smaller than before. Where there had been one there was none. He showed us the pancreas and covered up the liver and said that if a radiologist saw what was on the screen they would call it normal. In order to cover his but he made sure we heard that he cant say that the cancer on the pancreas is gone because there could be microscopic cancer cells still present but I am pretty much dismissing this.
When I asked him what he would suggest at this point he said that even if I wanted chemo he would not recommend it. YIPPEE. He asked what the alternative stuff I had been doing is and I fumbled through an answer. I definitely need to get better at explaining the whole tong ren thing is. How do I explain to a doctor that I go to classes where we whack on dolls and where I am surrounded by people who believe that I am going to live and be healthy.
My blood carries positive messages. In most ways it is testing blissfully average. Although I value individuality, in this case I really like average. The tumor marker, chromogranin which seemed be telling important messages that the doctors couldn't understand and suggested ignoring, continues to speak its truth. The number went from over 500 to 15 to 12 and now to 3. You might have a 3 too and you probably don't have cancer. Three.... normal...... When it was 15 was when I was in the hospital, terribly constipated, taking lots of narcotics, and pretty much scaring everyone into thinking the end of my life was coming soon. Me and my family, especially my dad suspected that it might hold some positive information. Trouble was the number and my physical condition did not seem to line up. At that point I had started some tong ren, tuina, and acupuncture with tom tam. Was it already working? There is no way to ever know and so I hope that I stop thinking about it but what would have happened if I didn't get so scared that I accepted chemo. Would I be in the same place that I am in now? Would my story be more true to the story I always imagined would be mine if I ever got cancer (maybe this should be a lesson to anyone who imagines what they would do if they get cancer..... stop imagining things like this!!!). A story in which there was no doubt that pumping toxins into my body didn't help me heal because I didn't choose to pump toxins into my body. Pain and fear are strong forces. Ones in which I hope to learn to coexist more peacefully with.
When I asked the doctor when he would schedule another scan he said, knowing fully that I would not do what he suggested, he would recommend scanning in two months. I do not imagine that I will do this. The plan I think will be to do blood tests looking at chromogranin, veg-f and some other factors that were originally tested by the naturopath who I didn't stick with (all which came back normal in my blood tests now and were not normal before). I will trust that the color of my urine is worth noting as in the last month it has finally returned to normal. Mostly I will hopefully learn again that if I feel well I am well. This morning for the first time in 5 months, when I felt sensation in my stomach and liver area I smiled and knew there was nothing to worry about and that probably it was more tumors shrinking (I tried to convince myself of this before but I never really bought it).
As my life seems to be having potential for more longevity I wonder what all this is doing to my family. The last five months have been crazy.... CRAZY. Hopefully whatever they are learning on this crazy journey will ultimately help them be healthier and stronger and it will outweigh the stress and anxiety that has become a frequent visitor.
This cold seems to have served its purpose and seems to be agreeing to leave quickly. All of this tong ren and other things seems to be boosting me to a higher state of health than before I knew I had cancer.
The excitement and reality of this news is only just starting to sink in. I was so braced fo rthe potential of news that the tumors were bigger that I am not really sure what to do with getting what I wanted. Seems like I should be having a big outward show of excitement. I am excited but my outward show is mild, smiley, robust but pretty much subdued. It will take me a while to integrate this stage of the journey.
What is healing anyway?
The night before the scan I started getting a cold. Although this brought up some feelings about being physically unwell from when I was a few months ago but was too depressed to really feel, I think it served me. I was mostly too preoccupied with feeling sick to pay much attention to the fear and anxiety that I was feeling about the scan. I went to the hospital with Nathan as support (dad to come later) feeling very inward, subdued, numb, and it turns out feverish. The scan was at 2 and I would see the doctor theoretically at 3 but realistically more like 4. For the scan they put in an IV line to put contrast into my veins. After having been a pincushion for the last 5 months it was the first time that it both hurt a fair amount and left bruising. It makes me feel grateful for all of the really skilled blood takers I have come across on this journey.
After the scan, I asked the technician to see the results. Although she cannot say anything about what she sees she was willing to give me a tour through the images of the inside of my body, telling me what was what in terms of organs, bones, etc. By this point I pretty much know what is what...I was looking for tumors.... which I saw. I could tell that things did not look significantly worse which eased my mind some. I could also tell that there were definitely still tumors. This narrowed the extent of my anxiety to somewhere between not the worst possible outcome and not the best possible outcome.
As expected it was nearly four until we saw the doctor (even so I still didn't finish the hat I was knitting and am so close to finishing). He came in and tried to make small talk. My dad impressively was able to shoot a little shit with him, asking him how his ski trip was..... When the doctor asked me how I was all I could respond was "that depends on what you have to tell me." With a big smile on his face he assured me that he likes what he sees. I tried then for a brief moment to shoot some shit with him, to no avail....show me the pictures.....
As he walked us through the comparison of the last scan and the new scan we could all see that each tumor or tumor cluster except maybe one was smaller or gone. Where there had been three for example there were now two and they were smaller than before. Where there had been one there was none. He showed us the pancreas and covered up the liver and said that if a radiologist saw what was on the screen they would call it normal. In order to cover his but he made sure we heard that he cant say that the cancer on the pancreas is gone because there could be microscopic cancer cells still present but I am pretty much dismissing this.
When I asked him what he would suggest at this point he said that even if I wanted chemo he would not recommend it. YIPPEE. He asked what the alternative stuff I had been doing is and I fumbled through an answer. I definitely need to get better at explaining the whole tong ren thing is. How do I explain to a doctor that I go to classes where we whack on dolls and where I am surrounded by people who believe that I am going to live and be healthy.
My blood carries positive messages. In most ways it is testing blissfully average. Although I value individuality, in this case I really like average. The tumor marker, chromogranin which seemed be telling important messages that the doctors couldn't understand and suggested ignoring, continues to speak its truth. The number went from over 500 to 15 to 12 and now to 3. You might have a 3 too and you probably don't have cancer. Three.... normal...... When it was 15 was when I was in the hospital, terribly constipated, taking lots of narcotics, and pretty much scaring everyone into thinking the end of my life was coming soon. Me and my family, especially my dad suspected that it might hold some positive information. Trouble was the number and my physical condition did not seem to line up. At that point I had started some tong ren, tuina, and acupuncture with tom tam. Was it already working? There is no way to ever know and so I hope that I stop thinking about it but what would have happened if I didn't get so scared that I accepted chemo. Would I be in the same place that I am in now? Would my story be more true to the story I always imagined would be mine if I ever got cancer (maybe this should be a lesson to anyone who imagines what they would do if they get cancer..... stop imagining things like this!!!). A story in which there was no doubt that pumping toxins into my body didn't help me heal because I didn't choose to pump toxins into my body. Pain and fear are strong forces. Ones in which I hope to learn to coexist more peacefully with.
When I asked the doctor when he would schedule another scan he said, knowing fully that I would not do what he suggested, he would recommend scanning in two months. I do not imagine that I will do this. The plan I think will be to do blood tests looking at chromogranin, veg-f and some other factors that were originally tested by the naturopath who I didn't stick with (all which came back normal in my blood tests now and were not normal before). I will trust that the color of my urine is worth noting as in the last month it has finally returned to normal. Mostly I will hopefully learn again that if I feel well I am well. This morning for the first time in 5 months, when I felt sensation in my stomach and liver area I smiled and knew there was nothing to worry about and that probably it was more tumors shrinking (I tried to convince myself of this before but I never really bought it).
As my life seems to be having potential for more longevity I wonder what all this is doing to my family. The last five months have been crazy.... CRAZY. Hopefully whatever they are learning on this crazy journey will ultimately help them be healthier and stronger and it will outweigh the stress and anxiety that has become a frequent visitor.
This cold seems to have served its purpose and seems to be agreeing to leave quickly. All of this tong ren and other things seems to be boosting me to a higher state of health than before I knew I had cancer.
The excitement and reality of this news is only just starting to sink in. I was so braced fo rthe potential of news that the tumors were bigger that I am not really sure what to do with getting what I wanted. Seems like I should be having a big outward show of excitement. I am excited but my outward show is mild, smiley, robust but pretty much subdued. It will take me a while to integrate this stage of the journey.
What is healing anyway?
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