The Good News

After two rounds of chemo therapy and more importantly lots of acupuncture, tong ren, tuina, and loads and loads of positive energy from people around the world the results are in from the CT scan.

80% reduction in the liver masses
95% reduction int he pancreatic mass
no evidence of lymph or lung involvement

So the plan I think..... I am going to go 1 month with no chemo then have another scan. This means that I have a renewed energy for being ultra vigilant with the tong ren and acupuncture. What if I can show my doctor that it really is not the chemo that did it but rather the tong ren....what if I can help spread the word.... more importantly what if I can convince myself that the tong ren really works? The down side to this plan is that it involves another scan. I almost cried during todays scan. It just feels so uncertain. Some sources say that it is like have between 400 and 600 x-rays and increases the risk of cancer by a significant amount and my doctor says that the scan is like having one x-ray. Who to believe. What is the risk? Is there a long term that I need to be careful about?

I am realizing that knowing how much improvement there is is going to help me believe and be ultra-vigilant but the risk might be pretty huge. That will make 5 scans in about 6 months. That is a lot. My plan is that the tumors will have continued to shrink over the month and the next scan will be the last for a long time. My doctor came up with this plan even though he thinks I should continue with the chemo right now. That's is a pretty cool doctor that he could find something that would feel pretty good to me even though it is not what he thinks I should do.

Side notes.... I feel physically really good. Emotionally I stopped taking the anti-depressant I think before it kicked in. The depression has loosed its grasp on me over the last week. Hopefully that is a trend.
I am getting out and about. I had visits from Ziggy and Karen this week. Two highlights of my week. Karen was a great sport and came skiing with me at night. She used some crappy skis that I found in the trash with boots that were way too big, and she said she liked it. Nice.
I spent the weekend with Suzanne and Rebecca in Boston. I got to experience a big snowfall in the city and how peaceful the city gets when driving becomes challenging enough that its not worth doing.
I was sad today to read that another friend has been diagnosed with fibromyalgia. It makes me want to scream..... enough already. Its been a year since I openned myself up for adventure for a year, no more I am closed now to adventure. This year I am only open to positive adventures. I feel certain that she will get a lot of support. Maybe I can learn to be a healer on the fast track so that I will say things like Tom Tam.... "fibromyalgia no problem" and believe it.

I have found my healers, why cant they move to MO

This entry is overdue but seems necessary to write in the order of things. I am feeling really good about my healing team. One of them is Tom Tam. I do not feel very connected to him, I think because he is soooooo busy and I don't feel especially special. I am sure he wants me to live however. He makes that abundantly clear in his bold statements about how pancreatic cancer is easy to treat and I shouldn't worry and look how much better I feel. Monica is another team member. She has the ability to range from being very sensitive to tough love and she has used the whole range with me. Monica will not let me die and she will not let me think I am going to die and she will not let me feel sorry for myself for very long. Her hands are amazing and she knows just where to touch. It doesn't always feel good, sometimes I am screaming in pain but I am never in pain afterwards. Magical hands Monica. The third team member is Eleanor. I feel like the universe was conspiring to make us meet. Eleanor is also certain that I am going to live. Every time we talk we realize how much we have in common. It feels almost eerie. Sometimes she says things that there is no way she could know about me but she does. I am so excited to someday get to spend more time with her in a more social way. I have a lot to learn from this mystical woman.
My mom found a therapist who seems like she will join the team. My mom searched for therapists outside of ones that are covered by Mass Health even though I told her she was wasting her time because if I was going to pay a lot of money I already had Marie Patrice. Anyway, I tried her out and think that I can work with her. I couldn't believe it when she said that she was willing to charge me what I felt like I could pay which was $35. She apparently felt drawn to my energy and wants to work with me. Again, I am flabbergasted and floored at what the universe (and in this case my mom) is sending my way.

This is not to say that my healing people are limited to these four... I have some seriously wonderful friends. I cant believe that I am still getting so much support from so many people. It is really really humbling Wow, I am still shocked by it.

Me and My Dad Shaved

How Can I Get Back To DR

I have decided that my new goal is to get back to Dancing Rabbit as soon as I possibly can. I don't know all that is involved in that or what it means or how it fits into treatment but I am not doing well here. This life doesn't work for me and I am miserable.

I just had a nice weekend at my sisters house and that helped but it is clear to me that I need to be at DR. I need to.

I am back in Milford and I don't know what to do with myself. There is no wood to stack no people to socialize with nothing is inspiring me artistically no little projects no planning......ahhhhh.... I am going crazy. Its not true that there are no people, there is Suzanne and Rebecca in Boston and Lisa here and Melany in Western, MA but how do I access them and how do I make fun when I am so bummed out. I cant make the fun it has to be happening like at DR when things just happen. I want so much to be there. Maybe I can go for just 2 weeks right now.... but what about this low white blood cell count thing. Traveling is sure to get me sick.

Chemo

I just finished my second round of chemo. Now I get to learn about the side effects. The first round didn't teach me much because I was so sick anyway that I don't know what was from the chemo and what just was. So far I feel very tired and blah. I feel a little nauseated but not much. Definitely spurring on the depression. I also am retaining water again from all of the fluids they gave me. It makes me feel kind of heavy and bogged down.

I went to Tom Tam today and while I was waiting to be seen, Eleanor, the woman who has offered to do free phone treatments for me was there. She admitted that the reason she was drawn to me was my hairy legs. I was the first person who had come through who had hairy legs like her. You never know when they will come in handy.

I shaved my head the other day. Actually my sister did it. I like the way it looks. It is patchy from the parts that already fell out. My dad also shaved his head in solidarity. It looks good.

I don't know what to do with myself.

Glimmers of Light

When asked if I was excited for Karen and Jonahs visit I felt so down that I couldn't imagine why I would feel excited. NO, I am not excited. It turned out to be a fine visit. Karen brought some of her amazing vegetable soup which makes my eating scene temporarily easier because she created the vegetable part of the meal.
The real light came when everyone left except Jonah and we got a chance to sit down together and connect for a few hours. It was the first time in months that I felt like I was able to be present for a conversation. It was a true back and forth and I didn't get too tired to continue. I felt like the old me for a few hours. Plus it was truly wonderful to connect with Jonah on that level. It was like magic.

Then yesterday after a long long day loading my body up with poison. Sitting for hours on end letting it drip into me. I feel numb, like I don't even care that it is happening. I don't feel passionately for or against it. I asked the nurses three times in the morning, when should I expect to start feeling shitty from this. All three times she said that it would start later this week. Delayed. SO when I started feeling nauseated and lethargic and heavy before they were even done dripping poison into me I was taken off guard and felt upset. Still I couldn't release the tears that yearned to come. Thankfully I had an acupuncture session set up for right after the treatment. It was pretty amazing. Just a few minutes after the needles were in I relaxed. I got some tears out before the needles were in. Real tears the kind that run down my cheeks. It felt glorious for them to come. Not a whole lot of them but some. Anyway, I went to a place of inspiration, I imagined that I could find a pottery class and take it with my mom. I imagined that I could find a violin teacher. I imagined a way that Nathan, Tereza and Tom could come and live in the Lee house and I could put all of my appointments between Monday and Thursday and go out to Lee Thursday night until Monday morning. I could imagine that they might even like being somewhere where there was central heat and hot water for the winter. It felt like me again for a while. I asked the acupuncturist to leave the needles in for an extra half hour and she did. Afterwards I blew her a kiss and before I left she initiated a hug with me. It felt like the right place to be.

Depression

This level of depression is new to me. I have never experienced this. I feel like an awful human being. People come to visit and I have nothing to say to them. It must be torture for them to be around me. Its torture for me to be around me. Who am I. This me bares little resemblance to any me I have ever known. I am eating out of depression. I am eating all the time. Giving my organs more of a workout than I think they should have. I just started taking medicine. One of the side effects is supposedly increased appetite. When that kicks in it is going to be horrible. I do need to gain weight but my food choices are not being that great. How do people get through this kind of thing. How am I going to get through this?

Birthday Phone calls

I think I will be up for phone calls on my birthday tomorrow. Please call if you feel like that is what you want to do.


I am working on getting myself psyched up for my birthday. Trying to get a better attitude and appreciate things. Trying to see the positive more than the negative. The sunshine today has helped a lot.

Sick Dad

Wow, my dad woke up this morning with all of his joints and bones aching. He thinks he is getting the flu. So he departed to the Berkshire house. It must have been hard for him to drive all that way feeling so crappy. I appreciate that he left though because it would really suck if I got sick. I think it might mean that he will be away for my birthday. It makes sense because it is not worth it for me to get sick but I worry he will be lonely and isolated. Also who will take care of him? I think he prefers to take care of himself. Hopefully that is the case.

Good Funny Movies

Do you have any suggestions for good funny movies.

It is hard to know what to ask for on netflix. Maybe even just really good movie suggestions would be helpful.

Thanks.

Sunshine

Today the sun was shining and the temperature was close to 70. I felt a bit of a reprieve from the depression. Not completely gone but a little bit lighter. I feel grateful for any reprieve I can get.

Next Round

On Monday I saw the doctor. He palpated my liver and couldn't feel the tumors. That is what I thought when I felt it too. He seemed surprised at how much they shrank. Hopefully that is really what is going on. So now it looks like I am going to do the next round of chemo. I feel very anxious but it feels like the right thing to do. I am anxious because I have a low white blood cell count and I am scared of getting sick. If any of you are set up to visit and you even think you might be getting sick, please consider canceling the visit, its not worth it. Me getting sick that is. The low WBC is from the chemo and now I am going to do more. Hold on immune system..... you can pull through.

I worry about the nausea and vomiting that might come from the chemo. I am not sure how much of the last round was due to tumors and how much was due to chemo.

The biggest thing right now because I am not in pain and I am eating and I am not nauseated is that I am super depressed. I think it is understandable.... I left a vibrant life to pursue treatment that I couldn't get there but I loved my life and I was just starting to really appreciate what I had. Now I am back in my childhood room at my parents house getting amazing care but still kind of a mind fuck. I am considering going on drugs. Lots of people think I should. Its like the old me is totally gone. I used to think that living a drug free healthy life style could keep me safe. But now I see it didn't and I have little faith in "healthy" lifestyle. Bring on the drugs. On the other hand I have been learning that I don't always need to do everything the hard way. Maybe succumbing to drugs is easier and that is okay.

I didn't even feel excited when the doctor told us the good news. I think that it is hard when he also says...well the goal is your quality of life anyway.... seems so clear that he still expects me to die.

The Hair

I started losing my hair for real. Nice thick healthy long pieces coming out in the comb. More than the normal few hairs in the comb. So Sharon and mom cut off my pony tail. It looks pretty good. In fact I am sad that I didn't have shorter hair sooner. It has been long for so long but I feel liberated and more fun with it shorter.

Dad told me that when I lose my hair he is going to shave his head in solidarity. It made me cry. I hadn't even considered that but it is very sweet and I think he will look really good with a shaved head.

Thanksgiving

Thanksgiving has come and gone. Most of the family came. I missed Jonah, Karen, and Lydia and family but it was a full house so maybe better to have fewer. Jake came the next day. One thing that happened was that people came and hung out the day after. I have been trying recently but wanting to for years, to get people to make time to just hang out and get to know each other rather than leaving as soon as things wind down. Things are happening with family that I feel really good about.

It was good for me to have so much distraction. Less time to figure out how to pass the time. I enjoyed having family here. I am super depressed though.

Sharon has been working hard at keeping me from getting to far into the dumps. She is really keeping me going. Not that I didn't appreciate the sister that I had before because I did, a lot, and verbalized it a lot but she is really shining. She knows what I need and pushes me in just the right ways. I cant imagine how hard it is for her. Sucks. Sucks. Sucks.

I was reading a blog of another young woman with cancer. I thought, Oh, I will write to her. Then I noticed that her last post was in January this year. I assume that she is dead. I felt overwhelmed with sadness that I couldn't contact her. Maybe she got healthy and stopped writing but I doubt it.

A Lot Brighter

So it turns out that the way I was feeling might have had to do with tapering one of the pain meds too quickly. It said use as needed and I had been having less pain so I tapered what I thought was gradually. Turns out not so much. So yesterday I took it again and it helped with the crawling out of my skin feeling. The problem is that it makes me vomit. So I am trying to taper kind of quickly again because vomiting makes me feel bad too. I hope that I am through the thick of it but now I know what to do if I have that feeling again.

I am in a better head space. Last night for the first time I was able to get myself back to sleep each time I had to wake up to pee by doing visualizations. I felt like I could feel the chi that everyone was sending me. There is a woman in Boston who offered to do free telephone Tong Ren sessions with me because she feels so drawn to me. She did one last night which was really relaxing and felt really great. These people swear that they have seen people over and over and over get better from cancer and other horrible diseases. They swear that it does not need chemo therapy. I think I feel enough better now that I am thinking of not continuing with chemo. I think I got what I needed from it and hopefully now things can go the way I want them too with the Tong Ren theory and the body work.

I got a book in the mail coincidentally I think but it is fiction and will tide me over so don't go sending tons of books now. I am very slow at reading, especially now that baths are less fun because the pain is less and I have to keep a cover over the port site.

I have not been feeling like having visitors at all. I hope that changes soon because there are so many people who want to visit and it would probably be good for me at some point.

The TPM supplemental feeding seems to be helping. Today I felt sooo tired but that was okay. Hopefully the TPM will catch up to my lack of nutrition soon. The water retention is gone now and I am really skinny. For me anyway. For some people that would be normal.

Today I finally got my license renewed. It was weird to say that I was fit to drive when I am totally not but I am not going to drive until I feel up for it. They were willing to use my old photo from before DR. It had short hair. I had them take a new one. It will be my first license photo ever that I don't have a big zit on my chin. It will be weird to have a license photo that always reminds me of having cancer. I guess that will be a pretty huge part of my life once I am better.
It cost 100 dollars just to change the state of my license. I couldn't believe it. More than getting a whole new license. It was hard to try to be normal in public when I felt so exhausted and frail.

The visiting nurses come a lot. I am not so nice to them. I don't have any patience for their asking the same questions over and over. My mom feels embarrassed when I am blunt with them. I am doing my best.

The Hard Part

I guess this is the hard part. The part I felt so stoic about in the beginning when I wasn't into it. I feel like I lied to everyone with that stoic attitude. I am not stoic now. I can barely make it through the nights or the days. My family is helping and trying hard to keep the mood up but it is taking a toll on them also.

There is improvement each day. Never feels like enough. When am I going to feel healthy again. Am I going to feel healthy again. Do I continue with chemo therapy? Do I take what I got from it and stop while I am ahead?

I need some good fiction books. I am out. I am sick of reading self help books and most of the time I am not up for reading anyway. Maybe I can get into books on cd.

The hard part didn't look so hard before I was in it. A part of me knew but I don't think I really got it. How could I? No one can unless you are in it or around it.

Alyson visited me. I felt sooo jealous. It was the first time I felt jealous of my healthy friends. Jealous that they could do what they want to do right now. Jealous that Alyson could choose to visit me and fell good and laugh and play with Colie. I could barely handle seeing Colie. It was too much. She has changed so much and I am missing it. I am missing a lot of my former life.

This is a new life. There is nothing left of what I was. I need to see what this one is offering me. So far its not as good. I liked my life how it was. There were some changes I wanted to make but I was making them.

Marie Patrice came yesterday. That was helpful. Got some screaming out..a tiny bit of crying. She helped me remember that this is my path and my journey and that it is not always going to look like this but this is where it is now and that there are things to learn at each stage. That the emotions are just energy passing through me. That life knows what it is doing. I do believe that life knows what it is doing but this one is not fun. I like fun.

Yoga, meditation they escape me. Where are you when I need you the most? I guess that is part of the path also. GRRRRRRRRRRRRRRR....

This IS the Hard Part

I am going fucking crazy. At night I am hooked up to a line that brings supplemental nutrition into my body through my chest. I am feeling so homesick. I want to be around for the beginning of the slower season at home. When people start to cozy up and the fires are warm.

The nutrition makes me feel better but better is not enough. I want to be all the way better. I am ready to be done with this craziness. I feel like I want to crawl out of my skin. Screaming isn't enough, crying isn't accessible. Walks, a little bit of jogging, and i mean a little bit help for a short time.

I have to wake up to pee every two hours. Getting through the night is excruciating. This fucking sucks. This fucking sucks. This fucking sucks.

Update number 1 (got too tired to finish)

Okay so I can imagine that people are pretty worried after my super short last blog post. That was all I had in me.

I went to the emergency room because my doctor wanted me to to get checked in fast so he could come help me. The constipation thing got to new levels and pretty much I just wanted to die. Nothing helped it and it was unbearable. I guess I bared it but only because there was not much other option. They were able to give me pain meds IV. Anyway three soapy enemas and one milk and molasses one later things felt somewhat better but not much. During this time I let the doctor do another CT scan because he agreed to no drink and no die.... seemed like it worked fine for them regardless. The good news is I felt a little better. The bad news is the the tumors have doubled in size and spread to abdominal lymph nodes and the lungs a little bit. One weird thing is that the chromagranin levels went from 500 something to 16. 16 is normal levels and chromagranin is a cancer marker....so what up. I wish I could have had enough faith to say I will just do more Tom Tam and Tong Ren and Tui Na. But I didn't. The doctor thinks that I will get relief from the chemo because if the tumors shrink I should be able to digest again and have less pain and that will I believe give me more will to live and continue on the Tong Ren path. When I feel so bad I have no will to live.

So I left the hospital after getting two fresh liters of IV fluids which proceeded to go right to my torso and legs. I am bigger than I ever have been and went from 127 pound to 144 overnight. Now thats some seriously interesting body change. It hurts. I wonder if I will get stretch marks from it. Oh well, maybe what I loose in hair I will gain in stretch marks. The hair hasn't started to fall out yet but before it does I am going to cut it. I guess this is my signal to cut my hair. I keep wondering for years now why I don't wake up wanting to cut my hair like is the usual pattern that gets me to cut my hair.

Its Bad

Just got out of 2.5 days in the hospital trying to empty my bowels. Some luck but not much. Some relief but not much.

Today I am planning to start chemotherapy.

Things are not going as planned.

Comic by Sharon about Tong Ren Theory

Thank Yous

I have been getting so many gifts that I really appreciate from people. I am learning to come to terms that I don't have it in me to thank everyone individually for them. Up until now it has been really important to me to make an effort to thank people for gestures. I have enjoyed taking the time to think about people who thought of me and to see what comes from that thought. That which comes from the thought will have to stay inside now because that is what I have the ability to do.

Please know that I appreciate everything I have been receiving from you. This is not limited to material things.

Thanks so much yall.

When Digestion Becomes a Conscious Effort

Tow days ago I went for my second tui na treatment. I am pretty much convinced that Monica is magic. I went in after loosing the breakfast I painstakingly ate and feeling pretty awful because of the constipation that is caused by the pain meds. I definitely used to take my twice a day regularity for granted, I had no idea how awful constipation is before this whole pain med experience. Anyway, throughout the course of a fairly painful session which included scraping that leaves my back bruised (I will upload a photo soon). Monica eased the pain and I was even able to sit up with no back rest comfortably). She made it so my dad and I could go to Rockport and take advantage of the sun and the ocean before heading home. When he suggested it on the way there I thought there was no way......

SO I had a nice time in Rockport with my father. We walked and sat at my pace. Held hands as we walked down the pier. Ate some seafood which I later, as my buddy Aurelia would say "bawfed it up" in one of my favorite of her passing expressions. I wonder what my new favorite would be, it just about time for a new one. I am sure next time I see her she might be using vocabulary words that are bigger than I understand.

SO that day I was pretty much 0 for 0 on the food thing.

By later that afternoon I felt awful. Crying pain, professing that I couldn't do it anymore, not being very nice to my mom, admitting something I think about a lot which is that I don't know if I really want to live and it feels like a lot of pressure to have people telling me that I need to know that I want to live and keep that present with me all the time. Maybe I am misunderstanding but thats how I take it. I need to figure that piece out. Sometimes I wonder when I am in so much pain what it will feel like if dying becomes close at hand.... I hope the pain eases first.

SO yesterday when I lost my breakfast again (I think, I cant remember the order anymore) my mom called the doctor and he recommended that I come in for fluids and iv nausea drugs. After blaming my mom for being the only reason I was accepting this treatment I realized that I sort of wanted to go in and see what the doctor had to say regarding all the drugs I am on anyway. I then realized that I think IV fluid would be good and also that I might as well give in an pump two more chemicals into my body. One thing is that it is kind of nice to have the thing I am doing being just sitting there. It is like being in a bath. I don't have to find some way to occupy myself and feel bad because I ma not able to meditate and not feeling up for learning chi gong or doing yoga. It was also nice to have my mom leave for a bit so I could have some time where I am not being watched. I have asked my parents to try to watch me so they can assess how I am feeling without asking me and it is also just kind of what happens when we live together and they are taking care of me. A break however was nice.

When my blood work from the day came back my already low hemoglobin from a few weeks ago 10.1 was down to a really low level of 8.5. This is a fast dip and getting to scary levels for medical folks and midwives. I grudgingly accepted a blood transfusion for later today. Also more fluids I think.

This night I ate some and had my first breastmilk because Danit came to bring it/visit. I was worried about a visit and that I wouldn't be up for it but it is going great and nice to have a new distraction for times when I feel up for it but not up for anything else. The boost of fluids and meds that day made me in a good space for a visit. The breastmilk was freshly pumped and felt as deeply spiritual going down as I expected it would. I also ate some other food. Thanks to the new meds and a whole to of mental work it is staying down but I am still having to work on it 9 hours after eating. Oh digestion where have you gone, please come back.

So 5 hours in the infusion ward today. It is a very nice place. A full stocked kitchen, not that I want to eat. Private rooms with private bathrooms. I got reflexology done right there in my room with no doing of my own to make it happen. It is brand spankin new and the nurses are nice. She didn't make me go home with bright pink vetwrap on the iv line. It feels like a big deal to get a transfusion because I think about the story when I was little and they wanted to give me a blood transfusion and it wasn't really safe because it was the 70's and my dad says he fought tooth and nail to not let them give me one. It is much safer now but it still feels somehow wrong. It is weird to put someone elses blood into me. My dad shares a blood type but they say it is higher likelihood of complications when one gets blood from a family member. Plus I am not sure that I want more of his genetics given the cancer history, heart disease, and diabetes. His blood might not even be eligible because of those things anyway.

One triumph of yesterday was that the doctor told me to take off the pain patch medication. Gone.....nice. Most of the pain I am having has to do with constipation now. That is a good thing and might be related to Tong Ren and Tui Na and Acupuncture. Maybe that whole thing is working. I am still on pain meds. We are working to make the only one be the original one that the naturopath suggested. This doctor knows a lot more about it and agrees about its lesser effect on the immune system. So tonight I was supposed to try the sleep med/anti depressant (that is the secondary effect, not such a bad side effect). This is already the second time I am totally awake....hmmm.... I think I am still working on keeping the food down....grrrr....

Oh, the social worker int he hospital came to visit me. I wanted to tell her to shut up and leave me alone but I refrained and eventually just closed my eyes because I thought I should give her a chance. Not helpful at all. Empathy is not something I am lacking nor something that she was able to phrase in a helpful way. It was nice of them to send her in to try though.

I am actually kind of looking forward to the rest of today. One reason is that I don't have to try to sleep anymore once it is time to go. Another reason is there is a high likelihood of feeling somewhat better afterwards. Also, maybe I will poo today. Yippee for poo. Also maybe I will end up licking up some new talents from the energy of the person whose blood I am getting.

Nausea and a hug

So the new thing is that the pain seems a little bit under control but the nausea is not under control. I am tired of it always being something. I am having a hard time focusing on the little improvements when each new thing is so uncomfortable. I never thought of myself as a puker. Now I might need to change that...I have been acting a lot like a puker.

I went to see a new doctor the other day. This one is at the Dana Farber center in Milford.... gosh its nice to drive for 5 minutes rather than an hour to get to a doctor. Mostly the visit was so my mom could feel a little less helpless when I am in pain in the middle of the night or when the drugs are acting weird in my body or when there is nothing to do but sometimes it takes an authority figure to remind her of that. Turns out that the doctor was much more what I a looking for in a doctor than the other doctor. He was empathic, he was not scared to touch me during conversation, he asked what I wanted from him, he listened to me, and best of all he was not at all weirded out seeming when I hugged him at the end of the visit. In fact I think he liked it. So now I have a doctor I can hug. Much much better. He is also trying to help me switch pain medicines back to the one recommended by the naturopath, non-opioid.

Computer Frustration

I am frustrated because the last two photos rotated themselves wrong and don't look how they are supposed to.... i find stuff about it on help but don't feel like dealing with it..... it you feel like fixing it for me let me know and I will give you login access.

Some End of SUmmer DR Beauty

The Catarpillar

Sara brought this caterpillar to show me when I was still at DR. I am so thankful that she brought it because I know I love them and have a photo project going to document the crazy caterpillars at DR. It was the first time that I realized that when I don't feel well there are things that I know I love and I can look at them and know it but that I cannot feel it in my core the way "I" feel things. It happened a lot this fall because the New England colors have been really amazing this year. Mostly I just know it in a heady way...it has been hard to feel it. I look forward to when I can fully feel the things that bring me joy.

Still Catching Up

I found my path for now....

I am going to be seeing Tom Tam twice a week at least until Thanksgiving. I am on pain meds but he assures me he will help me get off of them and that this cancer is no big deal. He does say that right now this is an emergency. Seems in line with how I feel. I am also going to see Monica once a week. Also I am hoping to have an appointment with MariePatrice once a week at least. Also I am supposed to get in on the internet guinea pig classes but I keep missing them for one reason or another.... I will get those in soon. Oh yeah and then there is also the propilis and breastmilk.

The other night when I felt panicky and anxious and finally felt tired enough to try sleep again there was no sleep when I tried. In my head I heard MP suggest that it is all just energy and to watch it. I decided to stop labeling it and to stop trying to sleep and watched it. It was really really cool. I felt like energy was bouncing around chaotically inside of my body trying so hard to find order but only gaining chaotic momentum. For a short while I felt my face contorting I didn't look into a mirror but it felt like it was making all of the faces that I react so strongly to that my father makes. All of the face which he has no willingness to admit he makes. It felt good to be on the other side of them, to be making them in rapid fire succession.... then my body just shook for a while, then it was all I could do to not call MP at 2am (maybe that would have been okay but we certainly have not discussed that possibility and it was probably better to ride out the full experience alone, I might not have been able to speak anyway) I suddenly felt glorious. The new experience of yelling earlier in the week combined with giving attention to my inner child left me yearning for more.... I felt completely open to finding all of the places where I have been blocked in my life I wanted to explore it all right then like the key to the treasure chest had been found and now I had access to all of the treasures inside of me I wanted more of understanding my reactions to my father, more of understanding what the little girl has to tell me...what was the effect of knowing about the holocaust from such a young age, what are the things, thought patterns, ideas holding me back, why do I mumble and speak so quietly, why is it hard to orgasm, why do I relate to money the way I do, etc...I cant even remember all the ideas that came up but it all felt right there, ready to be sorted out, ready to for the energy to dissipate into the universe. I didn't feel any sense of fatigue related to personal growth, didn't want a break, didn't feel like it would be too hard.... every part of my being felt ready to dive in and play in the chest of treasures that are me.

Again, for real or drug induced.....I don't know but I'll take it.

I went for my tui na session yesterday. Wow......wow..... she warned me that one thing she wanted to do would bruise me...I said go for it. She started with a little tong ren. Then I moved onto the massage table and she proceeded to scrape my back (the bruise inducing thing). It felt amazing. I had no idea that I had been wanting that for months but my body felt like it was finally getting something it had been screaming for for months. It didn't feel so great when she went over my bones, which have no paddling on them (it is still weird for me to be a bony person) but overall..blissful. She used some kind of icy/hot stuff while she did the scraping so when she moved on to hot stones the sensation is indescribable. Hot, cold, surface, deep, I don't know but really great. She finished off with tui na. Some of it was as painful as the first session with Tom but some which had been painful was now blissful. We were both laughing at how different my body was in just a few short days. She still knew all the right spots to work and still got some great big painful moans out of me. She finished by drawing a circle with her finger under my right shoulder blade and then pressing lightly in the middle of the circle. I instantly started crying. Yeah!

Today I went for my last traditional acupuncture session for a while. As usual it was also great but I am letting it go for a while because I cant handle so many appointments. For now I am also stopping my other massage appointments.

It feels so good to finally (which when I stop and look it feels long but has only been 2 months since diagnosis, finding this path has not really been as long as it felt) have things narrowed down to a path that feels right for now. I feel so good about it in this moment that if I didn't hate when people preach things that are only just new to them I would say hey Sharon, Sara, Tereza, Sparky, Alyson, Ziggy, Thomas...etc....... your ailments are fixable and you need to come crash with me in Milford and see this dude because he will fix things........ But if this turns out to be for real sign me up because I am going to get trained and go home and help heal my people. Monica is even claiming that they could have dealt with the blocked duct and I wouldn't have needed to stent....hmmm..... I am not sure that even if I knew then what I know now I would have been bale to believe that much..... but maybe.....

Its Loud Here

There is always a power tool running.

Its loud here.

The Apple Trees

I noticed that there are apple trees
in front of that house

Now I recall how excited I was
ten years ago when I was visiting

Because they planted pretty fruit trees
instead of the standard just pretty trees

The trees were loaded. one with red,
one green, and even a seckel pear

Every time I went to an appointment
I looked as we passed the trees

Each time more fruit was on the ground
The road is too busy for animals to forage

Each time I vowed that I would be healthy enough
to stop and ask if they were going to pick the fruit

Each time I thought about how much joy
I would get out of harvesting that fruit

Right there in the suburban neighborhood
That I grew up in

One day I even made it all the way to the house
On my not so daily walk

I took one red and one yellow apple
from the ground

The red one was perfect. Crisp, tart,
juicy. The yellow one, not so good.

On my way home I had to stop at least 3 times.
I sat on the curb eating my delicious stolen apple.

I checked with myself every day.
Is today the day I am going to ask and harvest.

Each day the reality was that I
didnt feel well enough.

Now all the apples have fallen and been cleaned up.
And I never felt healthy enough to collect them.

The Worse Than The Best of The Worst but Not The Worst of The Worst

So close to being caught up. I am up late writing this entry because I took the pain meds right before I tried to sleep. The response I am having....ahhh, a new one. I feel totally anxious. I have to look at my body to know that it is not shaking because inside I feel really shaky and panicky. Its better with the light on and doing something but whats this excitement all about. Maybe time for help from MariePatrice again...or maybe just the excitement of being a druggie.

Anyway, I had what I have been considering my last doctors appointment last Thursday. As I suspected the Octreatide scan turned up nothing, meaning that there are no somatostatin receptors on my tumors. I had a gut feeling there wouldn't be any and I feel a bit of regret for undergoing the test anyway. I think it was really important for my parents that I have the test so that their minds could be at rest that we tried everything to get a complete diagnosis. I know I shouldn't do things just for them but I feel okay about working as a team some to help keep them as on board with me as possible. I was interested to know if my gut feeling was accurate or not. Go go gadget gut.

The extended looks into the biopsies now suggest that the tumors are highly undifferentiated meaning that they are the least common of the least common of the least common kind of pancreatic cancer....still considered neuroendocrine just not one they have much experience with. She said she has seen 5 this year and that they are specifically a referral center for pancreatic cancer. So here is what she offered... traditional chemotherapy based on small cell lung cancer. My cancer is not small cell or lung. The best outcome would be that my cells would respond really well to it, the tumors would shrink, maybe my symptoms would diminish, and the cancer might stay away for a few months to maybe possibly 5-10 years but I would have the chemo side effects to deal with. The more likely scenario is that my cells might respond a little and then they would stop responding and regardless the cancer would come back in not too long or there would be no response.

Thankfully my family seems to be on board with me that none of these options warrant giving chemotherapy a try.

I asked the doctor again about the uterine mass and commented that the doctors keep brushing it off and asked her to hear me out on a theory... the theory is that if cancer can thrive in hormone imbalanced environments and I have something going on in my uterus and my hair and nails are acting like those of pregnant women could there be something to look more into. The doctor, nice as she is, practices in what seems to be a kryptonite box because nothing can break through to get her to think outside of it. Basically she said cancer can cause your hair to fall out even without chemotherapy... I explained that it was not only not falling out, it was really thick and bouncy and staying in my head..... she then explained that she wouldn't know what hormones to test for....

She did an exam on me and explained that the pain in the center by my sternum is probably liver that is enlarged....good to know, I think she is right. I had her feel the enlarged lymph node by my clavicle and if she though it had cancer in it. She said that she did think it probably had cancer in it as it is not unusual for pancreatic cancer to head towards the nodes in the chest. That was the whole exam.

I did not succeed in getting myself to give her a hug even though I think she could have used one and it was a goal of mine. I was in too much pain, not on the meds again at that point and was feeling so done with that model of care. I don't want to give the wrong impression... she is a super sweet doctor and later that night my mom had questions for her about some new meds and she called us from her home with a crying baby in the background and encouraged us to call more if we need to. She has been very attentive to the best of her ability and that is not something I have found every day in doctors (although throughout this cancer experience I have felt very lucky with the doctors I have had care from).

As soon as I walked out of the office I called Tom Tam the acupuncturist who invented Tong Ren or doll beating. They had an appointment for me and after a long wait for the pharmacy and then to get our car from the parking lot we we on our way, driving, driving, driving....driving some more.....ouch ouch ouch...

The appointment went like this. My mom helped me fill out some paper work. Tom stood there hyperactively shooting the shit with some people in the reception area. I am doubled over in pain, my parents are exhausted and recently found out that the prognosis went from years to maybe year, and everyone we come across seems happy and healthy and energized...like they are breathing life.

I go into the exam room (not much for ambiance) and Tom comes in and starts Chinese massage or tui na on my neck....I am pretty much groaning/screaming in pain...he is talking and making jokes the whole time. He asked if it was too much, I said as long as I can cry its okay and he and another woman who was in there but at the time I didn't know why encouraged crying...oh yeah let it out release it thats good....see now your laughing....so thats how it went for a bit Tom talking, me moaning/crying/laughing nauseated and nearly out of my mind... Monica getting tissues or water as I request. Then Tom gives me a break and uses the hammer and doll....you feel better? see you don't even know you must feel better. you look better. You have pancrea cansa, no problem. We cure pancrea cansa all da time. Don let tha doctas scare you. Pancrea no big deal....Then back at my neck for a while. He finds, on his own, the swollen lymph node and goes to town on it which actually didn't hurt but felt deeply right.

Then on to the needles. I could just barely lay down on my front but said I could do it for a little while. He only had me take off my shirt, not even my shoes. For that matter he never felt my pulse or looked at my tongue. He checked that I could stay like that for a bit and then put the needles in. There was no gentle finding of the spots or tapping the needles in. It felt like he was playing darts with the needles wha-bam each one went in painlessly. Thankfully Melany had told me about different needling techniques. You feel betta? Okay sleep...and he left.... into the hall where he was talking and others were talking and music was playing... again, no ambiance...which really didn't matter because I could barely hold it together in that position. He check on me once but after that I really felt done and didn't know what to do to get attention so I waited it out.

When needle time was up Monica came in and removed the needles and helped me up and introduced herself. Hello, I am Moan-ee-ca (from argentina). I pretty much fell in love with her at that moment. Then she went to town with the tui na up and down my spine and neck and head. She also joked that it sounds like she is killing me and that she was going easy on me. Evey spot she touched was a spot that had been screaming for help for months now even longer than the diagnosis. Earlier this year I found that I started holding my pain in my mid back and shoulder blades (they say that is common with pancreatic cancer). Thankfully I went to a tui na session when I was in Arizona in August or I would have been kind of freaked out. It also felt deeply right. She had no idea that earlier that day I had received a more grim diagnosis of my condition. Out of the blue she said as she was working, Don't believe the doctors about this...which helped release even more emotion. I once again felt like I was in a place where people want me to live...not only that they want me to but that they have no question that I will.

Tom told me to go back on the pain medication and assured me he would help me get off of it again but for good. He assured me that this would work even if I took the pain meds. What a relief but still over an hour of car riding to get to the pain meds.... but if I took the Pain meds I would feel good enough to go to Northampton to hear Sharon (darnit, someone told me how to get the accent but I didn't file the message and cant find it right now) playing at her drumming concert and then try staying with her and Rachel for a few days. I left in more pain that I arrived but way way way more hope.

When we got home we decided that my dad would go to Northampton and if I felt up to it would my mom and I would follow later. So I slapped on a patch, took a pill, and got in my sacred bathtub for instantaneous relief. The idea of packing and gathering food and medication was pretty overwhelming to me even though all I would have to do is tell my mom what to do. As the medication kicked in it did not feel like the time I had used it before. I got unbelievably exhausted. I couldn't stay awake. I watched the time go by and the possibility of going west became one I had to let go of. So we planned to go the next day. It felt pretty big. This was the first thing that I really really had my heart set on doing that I really felt the effects of not being able to do. The sadness was big. I wanted to be able to celebrate my sister a little. Her accomplishments and two days later her birthday. It is hard for me to take and take and take because I get a lot of pleasure out of giving. It also represented the possibility of seeing how it was to be at my sisters house sometimes and even more than that a full break for my parents from the intensity that is me.

The next day I couldn't shake the fatigue again. Fighting it was feeling counterproductive so I finally declared that I still couldn't go. This was coming in conjunction with the first time that I thought my mom was going to loose it. She was worried because of this new seeming drug reaction but more because I really couldn't eat at all. She tried and tried. When a Jewish mom cant fall back on feeding her sick daughter for comfort all hope is lost....but seriously she hadn't had a chance to feel the new diagnosis, to tend to herself, to be, to get support or comfort from somewhere. Finally I asked that we just give in to the sleep and stop trying to get me to eat or move or get it to change..... and I slept, and slept..... I think it might have been the accumulation of not having slept a full sleep cycle for days, weeks maybe.... now that I was physically comfortable enough to sleep my body was not going to pass it up.....heres to listening to the body..sometimes its hard when my brain knows best!

By evening when my dad got home the medicine was kicking in in the good way that helps me have conversations and giggle a little. This certainly helped my mom buy some time before she looses it. Hopefully we will find some more space for her this week.

As it turns out Rachel might have the flu so it is probably really great that I didn't go to their place and life once again shows me that things turn out, usually in some positive way.

Photos of Lambikins and Lolo the Room

Note, if you want to see photos of Lambikins and Lolo the Room and MizDah go back to the September 26th co-energetics post.

When Self-Hypnosis Turns into Raging Screams

My mom before I knew I had cancer! and My mom now!

There was a day last week when my mother decided that she was going to set up every kind of healing she could all in one day. Here is how it went...

My day started with a lot of pain, more than I expected because I had gone to acupuncture the day before.... I went to acupuncture and left feeling....lots of pain. I cried in the car with my dad. He gently held my hand, I am sure he was wishing he could take all of my pain away but offered what he could, a more realistic type of comfort. I felt desperate to be out of pain. I didn't think I could take any more. I keep comparing it to what I see in laboring women and thinking... when they think they cant take anymore they are frequently almost done..... what about me....can I be almost done?

The next appointment was to learn some self hypnosis tools for pain with John and MariePatrice. My parents were listening in on speaker phone to try to learn tools to help me also. Johns voice was so soothing and he was flowing well with the challenges I was dishing out when I couldn't visualize this or that.... eventually I admitted that I was getting very agitated and wanted to scream. J and MP immediately switched what they were offering me and we went to screaming.... I sent my parents out of the room. I explained why I couldn't scream.... there was so much screaming in my house growing up, it always led to pain, I never saw it lead to a more comfortable place of understanding and loving, mostly it would end but never seemed resolved and could come back out of the blue. Also It hurts when I scream. Hurts my voice. Now that I am a concert vocalist I have to worry about things like my voice. MO suggested putting a washcloth in my mouth. I decided that the worst that could happen is that I still couldn't scream. When I first did it I felt like someone had put a gag on me to make me not scream. I wanted to spit it out and make it go away for an instant, than I thought, what if I was being gagged and needed to scream...could I do it.... and out it came.....and came.....and came..... and came..... and during breaks they coached me to help me understand this anger and then I screamed more....and more...and more..... It was a most excellent release and new understanding and also the pain below and into my ribs eased....a lot.

Then I had a phone visit with a tong ren practitioner. He spent over an hour with me. The pain was set on running away from his efforts. I felt like it was a high speed game of chase where the pain was avoiding being worked on at all costs. Finally in the last 20 minutes things slowed down and the pain gave in a little and let itself be worked on. Not profound but something.

Then I went to get a massage. It was nice but by that point my body had integrated all it was going to in one day so I couldn't really tell if there was any difference. Mostly I felt spent.

I got home to find that Apple had sent me a package of propolis from Sandhill bees... its about the propolis and breast milk diet.. in a few years it will be all the rage. In it was the long awaited Apple and Ali sing CD. It came with a warning that it might not play and I shouldn't get too excited. Well too late because I was excited and there was nothing that was going to be okay about it not working. I started a bath, got new candles, turned the lights low and put the CD ......and thankfully it worked.....so I put it on repeat. I surrendered into the bathtub, which is where I can be found about half of the time these days, and cried when I heard my friends singing to me. They sang and they sang and never cared that I kept asking for the same songs over and over, they just kept singing them. I dreamed that one day I could join the Apple and Ali choir but I would definitely have to work on my slight southern accent among other things.

That night I was wanting to go to sleep but felt restless and pretty much beside myself not knowing what I needed. As usual now, when I want my mom she comes without calling. She racked her brain for ideas that might help me but nothing felt right. Finally I said, please just cuddle me. AS soon as she got in bed beside me I thrashingly said no, this is not it "get up" "I need to get up" (note the less than sweet language my mom has graciously been taking from me, I try so hard not to dish it out but this time I couldn't help it. Anyway, I found myself downstairs with a dishtowel in my mouth screaming more and more, and dry heaving into the sink, and screaming, and raging around. My mom joined me. She sat with me and even joined in some when I screamed. She rubbed my back when I heaved. She spotted me on the treadmill when I decided that I needed to run (not for long), she pumped up the yoga ball by hand with a tiny pump when I decided we needed to play ball, she kept at it even when I said I didn't want it anymore and went back upstairs to heave again. We tried the bath, and she tried to offer visualization, and song, and then other song when I wanted something more tuneful, and then other mantra when visualization wasn't it, and then other when that didn't work. Finally I wanted to be alone in bed and she was off the hook. Eventually I calmed down and slept.

I have always thought that I maybe don't want kids because I could never offer my kids what my mom offered me..... now the bar might be even higher.

My Amazing Mama

I hate getting behind in writing...thats why I never keep a journal consistently because I get behind and then I stop writing. Its hard for me to write what was when there is new that is.

I will try to get some of the highlights of the crazy last week because I want to remember them later....

The night I decided to go off of pain medication I was on the pain medication and still feeling kind of crappy. I watched a movie. It seems like I do not understand what comedies are these days because I keep trying to watch comedies and they are not funny and either about some sweet romance or about some kid who gets picked on in school...okay I watched the Jewish Hammer and that was kind of funny and not about either of those things. I am realizing that the romances are being hard for me because long term fulfilling romantic partnership is something I still have not experienced in my life. Before this diagnosis I was feeling at peace with where I was at with not having that but knowing that I would like it to come. When I watch the romance movies I feel sad because I know that it is possible now that it will never happen, that is if I die sooner than I expect to. Anyway, I just finished watching a pretty good one and thought... "I want my mom to come in." In about two seconds she came to the door... she has started coming to my telepathic calls now... I asked her to cuddle with me, not knowing what we were in store for. Shortly after she began to cuddle with me I started crying, but not a little cry, an opening of the flood gates. Crying, moaning, sobbing.... She quickly realized that talking was not where it was at and that she had what I needed which was to just hold me and support me in my release. During the release I realized I was scared to take off the pain patch and that I needed to overcome that fear. She held me while I tore it off, knowing that her job would become much harder as my pain kicked back in over the next few days, but she did not try to stop me.

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.