November 29, 2000
San Francisco, CA

Happy Holidays Everyone!

That seems like a great way to start a letter, don't you think? I hope that everyone had a great Thanksgiving however it was celebrated. I spent the weekend with my friends Rassamee, Ellen and Darci from Americorps. We had dinner at Karuna Jagger's house with her boyfriend, brother and sister, Jennie Abbott and Cindy Pugh. I even got to eat Turkey! Satya was also in town as well. We went to go see Fairy Butch and had an absolute blast! I don't think the crowd was ready to see my scar when my hat was taken off. Opps. I didn't really plan on that.

Quick update: I will be in Chicago very briefly for my brother's wedding on New Year's weekend. I will not be around for Christmas. But that doesn't mean that I won't be able to meet up with all of my friends there. We're having an open house at my moms' house (1456 Foster Avenue) on New Year's Eve Day from 2 to 6 pm, so please feel free to come by to say hello!

So here's the real update: I am now in my fourth week of radiation therapy. I was set for six weeks of radiation, but because of the various holidays, there will actually be seven weeks total. As for chemotherapy, I only do chemo once a month, and I will only take two doses total. I took my first dose when I started radiation. I had a mix up and didn't take the full amount of chemo that I should have. Needless to say, I was a bit panicked. However, I'm still alive and kickin'. Because I am in a clinical trial, I am taking both Temodar and Thalidomide. Temodar is chemo in a pill form. I was really lucky because I didn't get sick from it at all. I will be taking the second round of Temodar in another week. Thalidomide is the drug that was given to pregnant women in the '60s for morning sickness and caused horrible birth defects. So I am not allowed to get pregnant while I am taking it. (Wasn't really planning on that anyway.) I started on the Thalidomide the second week of radiation. I get really tired from the combination of radiation and Thalidomide and tend to really sleep a lot. My body is adjusting to the Thalidomide, but the dosage is constantly increasing, so it will be a while before I really settle down with the drug. I will continue on the Thalidomide for a full year. Yes, that's right! No drugs or alcohol or babies for Danielle while she's doing the scripts!

The drugs that I have been taking have taken their toll on my body. I take a combination of drugs: one to prevent seizures and steroids to prevent brain swelling. I was nearly toxic on the antiseizure drug. It was making me very dizzy. The side effects of the steroids I don't really care for (so I will not mention them here). But I have been looking different these days. This past weekend may hair really started to fall out. It happened almost overnight. One morning there was hair on my pillow. The next morning the whole patch was gone in the shower. That was when I really freaked out. I've been in a lot of denial recently. But losing so much hair really freaked me out. I know everyone says that I always wear baseball caps, etc. But this is such a different feeling. I even lost some of the hair on my legs. I haven't shaved them since 1994. I talked to another astrocytoma patient who has been alive for 10 years (yeah!), and she said she didn't really admit that she was sick until her hair fell out. Well, I'm accepting it now. So I went down to Supercuts and had them shave my head again. There's nothing worse than having half a sideburn on your face. I couldn't stand it. Now it looks much better. Thank goodness.

Another thing I have learned is how to be a more aggressive patient with my doctors and nurses. Thanks to Krista, I've been listening to Dr. Bernie Siegel a lot, and now I am learning how to be more aggressive. I have to learn how to be an exceptional patient, because our mental health is directly related to our physical health. And I need all the good physical health I can get. I've always known that one's material stuff relates to one's mental stuff. But I never knew how much my physical health related to my mental health as well. So we continue to learn every step of the way!

Some of the cancer patients I have met at the hospital have been incredible. I have learned so much from them about how to be an aggressive patient. They are such an amazing inspiration to me. They tell me how to deal with my doctors and keep track of my records. And I feel like they're all going to make it. So I have to feel like I've got a good 25 years in me as well.

An amazing thing that has happened in all of this: I have heard from so many great people that have touched my life in so many ways. My new friends in San Francisco are amazed when I tell them stories about friends from Evanston, Smith or Americorps. They can't believe that I know so many people and have so many stories. Of course I remember everyone. I can't remember a thing from Government 100, but I do tell great stories. One of the drawbacks to this is that my short-term memory is tricking me a lot recently. I start to tell stories, then I forget what the point of the story was. Some people claim that I always did that, but this is different. I have also lost most of the front left lobe of my brain because of the way the tumor grew. So today when I had my frozen juice, I got brain freeze, but only on one side of my head.

One issue that tugs at me is that I wish people cared this much for each other all the time. I'm amazed at the outpouring of love and attention I've received from everyone. I feel like I don't deserve it. I walk down the street and see people asking for change, and I wish there was a way we could really help them. Or I see someone younger than me in the radiation area at the hospital, and I feel worse for them than I do for myself. I'm beginning to think that friendship is so special because of how it makes us behave. We do special things for the people we love or have touched us because we care so much about them. And I have to say, I have never felt so loved and cared about as I do right now. I've also never been this sick. May it never happen to anyone else we know and love. So I'm going to say thank you one more time. (Don't worry. I'll say it again.) Everyone has been so wonderful. I don't think I would be this strong if it wasn't for everyone letting me know how much they care. I love the community that we've all created together. I have to say we rock!

A special shout out to Chicago Women's Rugby for throwing a benefit for my fund last Friday at Kerrigan's in Chicago.

Take care everyone. Have a great holiday season!

Lots of Love,


P.S . I got a great card today from a very old friend, and it made me want to cry and smile at the same time. Why is everyone so great?

P.P.S. Please remember to send emails to my new address, Thanks.

home * guest book * contribute * updates * in her own words * in memory * album * medical links