December 23, 2000
San Francisco, CA

Happy New Year Everyone!

Well, it's that time of year again. You know, that time when we're all supposed to be really happy, buy lots of stuff, see our families, eat a lot, and so on. It's also that time of year when we get to look back at all of the past year's events and decide how we feel about them.

Quick update again: We're having an open house at my mom's house on New Year's Eve Day from 2 to 6 pm. The address is 1456 West Foster Avenue; the number there is 773-275-6138. Please feel free to come by to say hello! (I will be in Chicago very briefly for my brother's wedding and only on New Year's weekend, so this is the only opportunity I'll have to visit with friends.)

I'm going to write this letter in a new way. I've been hit with so many of the same questions that I thought I would try a new way of breaking them down so that people understand what I have been dealing with over the past two and half months.

First I'll start off with the bad news: As most of you have heard, I was diagnosed with a brain tumor in the emergency room at the University of California at San Francisco on Sunday, October 1st, which was the first day I had health insurance though my new job. The tumor was removed a week later by Dr. Mitchel Berger, who happens to be the best neurosurgeon in the country. The tumor was then diagnosed as a glioblastoma multiforme, otherwise known as a GBM. For those of you who have been watching ER recently, you'll note that this is the same tumor that Dr. Green has been diagnosed with.

Because GBMs grow with fingerlike tentacles that infiltrate healthy brain cells, the tumor was able to take over much of my front left lobe. As a result, much of the tissue of my brain's front left lobe had to be removed during surgery. As I later found out from one of my doctors, humans only need one lobe to live and function properly. As I continue with my treatment, the cavity will continue to close in on itself. However, since brain tissue does not grow back or rejuvenate, the space will never completely fill up. I will forever have an empty cavity in my skull where the front left lobe and tumor were. Also, in order for the surgeon to remove the tumor, a piece of bone was cut out of my head. At the end of the surgery, the bone was restored to my skull and held in with three small pieces of metal that hold it in place while the bone grows back together. So I don't have any screws in my head, just pieces of metal that hold the bone in place.

A GBM is one of the worst brain tumors found in humans. And although the surgeon cleared away as much of the tumor as he could, we knew that there were still microscopic cancer cells intermeshed with my healthy brain tissue. Therefore, my treatment has been a very aggressive one aimed at destroying those remaining cells.

My treatment was as follows:
1. Radiation treatment to my skull every morning at 9:30 am, Monday through Friday for six weeks total (extra days were added for missed holidays and a late start)
2. Steroids to control the swelling in my brain (one has to be weaned off of steroids, so it took a long time to finally get them out of my system. They also have many horrible side effects)
3. Anti-seizure medication to protect against future seizures
4. Previcid to control upset stomach
5. Thalidomide, which is used to fight cancer cells and causes constipation
6. A stool softener and laxative to deal with the constipation that results from taking Thalidomide
7. Temodar, a pill form of Chemotherapy given once a month for five days that does not cause a great deal of nausea
8. Zofran, an anti-nausea drug given while taking the Temodar
9. I also took several natural medicines to help me with things like colds, etc.

While going through treatment for cancer, the immune system is greatly suppressed. I have not been able to take my second round of chemotherapy due to a cold that I have been fighting for several weeks. I have also experienced horrible side effects, which include the following: a new beard and mustache; weight loss and gain; constipation and its opposite; atrophy of my muscles; some nausea; a full body rash; mood swings; loss of hair on the front half of my head; fatigue; and loss of appetite. I have been informed that a lot of these will eventually go away. Therefore, we are counting down the days until I look like my old self again.

People often ask me what I do during the day. I've been asked if I just hang out at home watching television, etc. I wish that the past two months had been that easy for me. Instead, I would leave for the hospital at 9:00 am or so and not get home until 12 noon or 1:00 pm. There were always questions that needed to be answered, doctors that needed to been seen, blood that needed to be taken, prescriptions to be filled, and on and on. It just never seemed to end. I was lucky if I could sneak in a nap in the afternoon with all the running around that I was doing. And each day when I returned home, there were always tons of phone calls that needed to be returned, thank you notes to write, etc. There is nothing worse than going to the pharmacy to have a prescription filled and being told that your insurance has been canceled. Each day was an incredible struggle, and it hasn't stopped as of yet. I was just taken off all of my medications due to horrible, nasty rash that has taken over my entire body. It is very itchy and uncomfortable. So it was not until this past week that I was finally able to spend some quality time at home in front of the television praying for my rash to leave this planet. Hence, no holiday shopping has been done.

Now for the good news: On Thursday, December 21st, I was given an MRI so that we could see what changes had occurred since I began treatment. My mother flew out to San Francisco to join me for this turning point. My neuro-oncologist, Dr. Susan Chang found no visible new growth in the brain cavity. The MRI results were similar to those of an earlier CAT scan done by the radiologist-oncologist. And although this is very good news, it does not mean that I am out of the woods just yet. I have already changed a lot of my eating habits, started taking yoga again, and been to acupuncture, support groups, therapy, etc. And I believe that it is really helping me in my fight against this disease.

One of the things that I have learned recently is that I have to rephrase most of what I have been thinking in my mind. I can no longer say that I am going to beat this cancer or that I can beat this cancer. I have to think to myself that I am beating this cancer each and every day. I also have to continue dealing with all of the emotional issues that have prevented me from living my live as fully as I would like to. And I have to believe that I do have the power to heal myself with in me.

I have to admit that I experienced a horrible period of depression last weekend when the realization that people with GBMs are only known to live 10 to 20 years after diagnosis. And yes, we could all die tomorrow. However, there is a huge difference between dying by accident and being confronted with your own mortality. And this is even harder when I hear of people who have so recently committed suicide. Like I said before, I never thought I would die at such a young age as 37 or 47 years old. I think I need periods of depression like this to remind me of the challenges I am facing. I recently attended my first support group for young people with cancer and met some amazing people. They made me feel so lucky that I was not facing the battles that they are and that I have been given quite a few years to live in comparison. However, I do think that I have been quite positive throughout the whole ordeal and that I am entitled to some depression once in a while. So I apologize if I am not always up for talking in person or on the phone. It has been wearing me out quite a bit recently.

Well, this is all I can come up with for now. I will continue to give more updates as I move along in my treatment. Thank you again to everyone who has offered and given me help or written to me. It has been so great to hear from everyone. Take care, and have a wonderful and very happy, healthy New Year.

Love Always,


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