May 7, 2001
San Francisco, CA

Happy Spring Everyone!

Well, it's May and I'm still here in San Francisco fighting my tumor. Go Danielle, go! I hope that everyone is thawing out around the globe. I was wearing shorts today while out doing my laundry.

I was able to spend some time this week going through my old emails, trying to update my new address book so that more of you would actually get my letter. If you're not interested in reading it, please feel free to delete it.

Here's the good news: Passover came and went. What a great holiday. I love Passover. I love that it's all about the coming of spring, emancipation from slavery (both physical and mental), and change. I went to a great Seder with my friend Ardys, who I met during my junior year of college. Ardys is now my most excellent acupressurist.

I got to spend some quality time with my friends over in the East Bay helping to take out all the concrete that was Karuna Jagger's driveway with a jackhammer. If you ever need to let go of some stress, a jackhammer is certainly the way to go. Jennie Abbott, Cindy Pugh and I went to see Prince on April 28th. I saw the Chicago Cubs beat the San Francisco Giants at the New (not quite Wrigley Field) Pacific Bell Park. I was very excited to see my team crush the Giants. My plans to see Josie and the Pussycats fell through, but I got to go see the Boston Red Sox beat the Oakland As instead. I have also been playing soccer with my new team, Brown Sugar. It's a ton of fun, even though I still don't understand soccer. What can I say? I was a goalkeeper in high school. So I've been pretty good about living my life to the fullest.

So here's the big news: JOAN JETT ROCKS MY WORLD! When my friend Caitlin told me that Joan Jett and the Blackhearts were coming to San Francisco on May 5th and asked if I wanted to go, of course I said yes. Caitlin was going to buy the tickets, but the show was already sold out. So we put the brain-tumor tactic to the test and sent an email to Blackheart Records (Joan Jett's fan club and record label). We explained the brain-tumor situation and asked if there was any way we could come to the show. Two days after I sent the email, I received a reply saying that we would be on the guest list. How cool is that? I GOT TO SEE JOAN JETT AND THE BLACKHEARTS!

Caitlin and I got the show early, which was a good thing, because Caitlin knew just where to stand in the club. I introduced myself to Joan's road manager, Elliot, thanked him for letting us into the show, and asked if there was any way we could meet Joan later that night. He said he would see what he could do. Then Joan came on stage and started off with "Bad Reputation," and Caitlin and I both swear that she winked at me during the song. After the show Elliot was able to get us backstage, where I got to speak with Joan for a few moments. Being the dork that I am, I told her how great I think she is. Then I told her what a pioneer for women in rock she has been and that she is a huge influence on me. I then told her about my brain tumor and asked her to sign my promotional photo of her that I had bought, and she did. I even showed her the scar on my head because the editor from Girlfriends magazine who stood next us during the concert said Joan would think this was cool. I then asked to take a picture with her, and she put her arm around me for it. Needless to say, it was the best concert of my life. Thank you Jennie Abbott, Caitlin Williams, Claire Kelley and Kara Staggs for writing additional letters on my behalf.

Here's the difficult news: As I have said before, glioblastoma multiformes are especially dangerous because they eventually grow back. My doctors say that just before surgery, my tumor was between the size of a golf ball and an egg. Some of the tumor remained in my skull because it was on the corpus callosum, which is the band of commissural fibers that unites the cerebral hemispheres. This band enables you to have control over both sides of your body. Cutting the corpus callosum would have eliminated my control of the right side of my body. Not much quality of life in that scenario.

When I was first diagnosed with a brain tumor, I was asked to be in a study that would allow researchers to evaluate my progress using a technique known as spectroscopy. Spectroscopy is done during the MRI. An MRI is a very detailed series of images of your brain. I have an MRI/MRS about every six weeks to two months to track the tumor and any growth that might be occurring. Spectroscopy is the examination of spectra. I believe this technique shows either the rate at which cells are feeding on glucose or multiplying.

I had an MRI/MRS on Thursday, March 29th. My mother flew out to be with me during the MRI/MRS and to meet with my oncologist the next day. I met with Dr. Chang, my oncologist the next morning. She said the results were inconclusive. I was told that the MRI seemed to show tumor growth, but that we should wait to find out what the tumor board thought of the spectroscopy. Dr. Chang told me she knew of four patients whose MRIs showed similar change that was actually scar tissue or dying tumor cells. I am, of course, hoping that this is the case with mine. It was great to have my mother in town so that she could be a part of treatment.

The tumor board met the next Thursday and discussed my case. I was awaiting Dr. Chang's phone call after the meeting. However, due to a family emergency, she was out of the office and missed the meeting. Her fellow called me instead and told me that they all felt it was tumor growth and that Dr. Chang would discuss changes to my treatment when I met with her the next day.

Needless to say, I fell apart. I had talked to my friend Krista earlier that week, and she had asked me what my gut was telling me. I had said that I thought the tumor was growing. I hung up the phone and cried. I called my girlfriend Claire and asked her to call my mother so that the message would get relayed to my whole family. Claire and I then decided to go over the Kate and Susan's to hang out and watch a funny movie. You see, I've been told my neuropsychologist that funny movies are really good for my immune system and that I should watch a lot of them. So we ate carryout Thai food and rented This Is Spinal Tap on DVD. It was great to watch. As my brother Mike said, "We'll just have to crank your treatment up to 11."

The next morning I went to meet with Dr. Chang to discuss my treatment changes. Until this point I was on Temodar, which is supposed to be the best new thing in brain-tumor chemotherapy treatment. Dr. Chang explained that the results were still inconclusive, but that she wanted to be extremely cautious and change my treatment.

The first line of attack was a process called Gamma Knife radiation. Regular proton radiation can only be done to a body part once. I had six weeks of regular proton radiation when I first started treatment back in November. Gamma Knife can be done as many times as necessary or desired. It was a grueling process. I spent Monday, April 16th at the hospital meeting with the radiologist oncologist fellow, who went over the procedure and explained what would happen when I came in the next day. I had a blood test and tried to meet the nurse that would be giving me my IV the next morning. My brother Mike flew in to be with me on the day of the Gamma Knife, which was Tuesday, April 17th (my brother David's birthday!). Claire, Michael and I arrived at the hospital at 7:45 a.m. and were taken to the preoperation room right away. I was then given the IV and a few sedatives by a great nurse named Lisa.

Lisa suggested that I hold a towel over my eyes so I wouldn't see the other sedatives they were going to give me. The other sedatives were like Novocain, which most people know burns like crazy. Only they were injected into four different spots on my head. I can't tell you how much I cried or screamed. The reason they numb these spots is so that they can put a mask over your head and secure it to your skull with bolts. Yes, I had bolts going through my skin into my skull. It was not comfortable by any means. (I got a picture of it to show people what it looked like.) The mask is essential because the radiation in Gamma Knife is so precise that the head can't move at all through the process. A special cover was placed on the mask so that I could have another MRI. After the MRI, I was taken back to the preoperation room to wait while the physicists decided how they were going to use the radiation on my tumor. After waiting an hour or two, I was taken down to the radiation department and placed in the Gamma Knife machine. I was given about 11 shots, which took an hour. After each shot, the doctors would come in and readjust my frame in the machine. After all the shots were given, the frame was removed and Band-aids were placed on the holes where the bolts had been. (It took about a week before I finally took the Band-aids off. I was afraid of the holes becoming infected.)

Having my brother Mike around was great. Claire, Mike and I went to Morton's for some of the greatest steak in the world. Afterwards, we went to the Tonga Room at the Fairmont Hotel. It was great being a tourist for the evening.

The next phase of my new treatment is BCNU, which is an IV form of chemotherapy. I will no longer be taking Temodar. On Wednesday, April 25th I started my BCNU treatment at UCSF. I'd already gone and introduced myself to the nurses and informed them of my terrible fear of needles. They told me it was okay to yell, but that I couldn't jump. They even gave me some numbing cream to put on my arm beforehand and told me where they would put the needle. Claire came with me on Wednesday to hold my hand and read Harry Potter to me.

The oncology nurses who gave me the chemotherapy were really great. Linda was exceptionally great. I was told she was a real pro before I met her. But she is great! She warmed up my arm to get the veins working better, and confirmed that the chemo would sting. My friend Pippa's godmother, whose husband has the same tumor, told me to ask for it on the slowest possible rate so that it wouldn't sting. It was supposed to take two hours. However, it wound up taking just over four. Now I'm recovering from the chemotherapy.

When I was first told that it was tumor regrowth I cried. I was angry that I was dealing with regrowth already, especially so soon after surgery. Dr. Schmidt's response to me on the phone was, "Well, it was a pretty big tumor." Not too encouraging. But then again, a lot of people told Lance Armstrong that he would never ride a bike again, and he went on to win the Tour De France--twice. I spent most of that week accepting the fact that I was dying. Then after the Gamma Knife procedure, I felt like fighting again. I felt way too good to give up. So now I'm back into fighting mode, ready to kick this tumor's ass!

As a result, soccer has been put on hold for a few weeks while I recover from the radiation and BCNU. I have been taking some time off of work to get all of my doctor's appointments in and taken care of. I have to thank the people at Squaretrade again for all of their help and support in getting me through this. I also have to thank all of my friends who have been so wonderful about emailing, calling, and visiting. I have such a wonderful group of friends around me, and I can't tell you how much it means to me.

Take care.



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