Tuesday, December 22, 2009

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.

Monday, December 14, 2009

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.

Thursday, December 10, 2009


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.

Tuesday, December 8, 2009

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.

Saturday, December 5, 2009


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?

Thursday, December 3, 2009

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.



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.

Wednesday, December 2, 2009

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.