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.