Update: 2/23/07

Hi Everyone:
I wrote the following email earlier this week, and since then we have had some rapid new developments. To save time, I’ll leave the email, below, intact, and just add this new information here.
Phil had an MRI on Monday, and the results show that the tumor has gotten worse in one particular spot, especially. The swelling in the left temporal lobe has worsened considerably as well, and the swollen brain tissue is starting to push on the brain stem. Dr. Kokkino was very surprised at the rapid progression, as were we, and recommended surgery as soon as possible. The MRI studies were overnighted to Dr. Berger at UCSF. He looked at them today and recommended we have surgery this Monday to remove the part of the tumor that looks high grade. So, we are flying down to UCSF on Sunday, and Phil will have surgery on Monday night. Dr. Berger has two other neurosurgeries that day, so please pray for him to have a steady supply of energy and clarity throughout the day and evening. The doctor recommends staying in town for 4-5 days post surgery to see that everything is going well, so we’ll be in San Francisco from Sunday night until Tuesday, March 6th.
Today, the neurosurgeon started Phil on steroids to reduce the swelling in his brain. He’s had one dose so far. They can be a little tricky, but we are hoping that he will have little to no side effects from them. He really needs them right now, so I’m glad he is taking them.
Please think of us over the next week and a half. Phil’s daughters could use your thoughts and prayers right now, too. Feel free to email notes of encouragement and whatever you’d like between now and tomorrow night. I’d like to print your emails out and take them along for him to read and be encouraged by.
Thanks so much!!!
-Elizabeth

Dear Friends and Family:
It has been difficult to put the energy into writing an update lately, and with little going on regarding medical updates, we decided to wait for more news before sitting down to send something. We apologize if this has worried any of you. Please remember that you can always check in with us if you are worrying and need some information.
We have taken some very important steps in the past month. We found an online support group for caregivers of people with brain tumors, and they have been so helpful. I felt desperate to hear some positive stories of biopsy, and I decided to post a request for just that. I received 21 responses, all encouraging and full of information on that topic. I read them to Phil (as we both cried our eyes out), and we felt so much more at ease about moving forward. The first email we read said that the biopsy went very well and another included her husband’s subsequent surgery that also went very well and without any difficulties. We learned that brain tumor patients who are treated at the major Brain Tumor Research Centers (like Duke and UCSF) generally live longer than those treated at local hospitals.
And we learned of a nutritionist in Utah (Jeanne Wallace, Ph.D., CNC) who has treated 650 brain tumor clients, most of whom have outlived their doctor’s predictions. Her partner has a glioblastoma multiforma (GBM), “the worst of the worst.” That diagnosis typically carries a prognosis of 6 months to a year to live, yet she is still doing well 9 years later. Jeanne recommends only those nutritional interventions that are supported by research, and it seems everyone we heard from who is doing well is following her program. You can check out her website which contains links to some of the articles and papers she has written: http://www.nutritional-solutions.net/
We also heard from a woman here in Oregon who is being treated by Dr. Berger, the neurosurgeon we consulted at UCSF in San Francisco. She was diagnosed with GBM 6.5 years ago but was only given 6 months to live when she was first diagnosed. Both she and our local neurosurgeon (Dr. Kokkino) have said that Dr. Berger is the top neurosurgeon in the country for temporal lobe tumors. Needless to say, we were very encouraged by all of this. It seems that everyone who is outliving their initial prognosis is using multiple treatment approaches simultaneously (the very best surgery and chemo as well as nutrition, herbal formulas, supplements, meditation, exercise, etc.)
Next steps: (number 1 has changed from biopsy to surgery. 2 &3 are likely to stay the same.)
Phil has decided to have his surgery performed by Dr. Berger at UCSF. We will fly down there a few days ahead of the procedure. The biopsy will involve a half day of tests on the day before the surgery. If all goes well, then he will be released about a day or two after the surgery.
Then, we expect to see the neuron-oncologist at UCSF during the same visit and begin treatment with Temodar, the treatment of choice for Phil’s type of brain tumor. Berger says he is “an ideal candidate” for it. Temodar is taken in capsules, so it can be taken at home. It is given for 5 consecutive nights, followed by 23 nights without it. This monthly cycle goes on for a year or more. It is supposed to be well-tolerated – no hair loss, for example. There are some possible side effects including nausea, some fatigue, and headache, among others, but we’ve read that regular exercise really helps with all of these, and that many people don’t even miss work. So we are optimistic.
Phil will be working with the nutritionist, Jeanne Wallace.
Many people have asked me how I am doing. I’m putting together a support system including the btcaregivers online support group, a therapist I’m seeing weekly now to provide me with a place to dump all of this and work through it, and I’m eating well. I am learning that to really be a solid caregiver, I have to do many of the same things Phil does to take care of his physical, emotional, mental, and spiritual wellbeing. Some are easier to fit in than others. Fortunately, we are both eating so much healthier – lots of veggies and fruits, few to no sweets, etc. Cooking for him means I get the same good stuff. And we are sleeping pretty well. We continue learning how to navigate all of this together. We still talk, laugh, worry, work, and play together. We have good days and some difficult days.
Some days, it is hard to remember how we felt before this happened. I remember that I used to always worry something like this might happen. Now that it is here, it’s strange. I can’t quite explain it, but it is a little bit funny to have worried so. Once my worries came true, I found I had no more answers to my “what if..” questions than I had before. Think about it. What if you learned that your loved one had a terminal illness? Could you then be certain who would go first? Not really. Could you be certain what would finally end your loved one’s life? Not really. It could still be anything. And the life expectancies for people with brain tumors? People are outliving them every day. So we still don’t know anything except that we have this work to do and a life of love to live together. (Phil added that last part. J)
Stay hopeful for us. If nothing else, it makes us, you, and everyone else feel better while we travel this road together. We will keep you posted. Please keep praying for us in whatever way is meaningful to you. We are so grateful for every good thought, prayer, and hope you send our way.

Love, Phil and Elizabeth