Update: August 16, 2007

Dear Friends and Family:

It has been a little over two weeks since Phil started the new chemotherapy protocol (CPT11 and Avastin) and we have been holding our breath. He has had two infusions so far, and he will have one more before his next MRI at UCSF on Sept. 4th.

Before getting his first infusion, his deficits were getting worse by the day. More difficulties with speech, memory, and vision in his right eye. What started as a small blind spot grew, within 3-4 days, into a wedge-sized blind spot in the upper quadrant of his right eye. So we pushed for the new chemo to start right away. They worked it out, and he was able to have his first infusion at the hospital the next day (our thanks to Anne, Dr. Monticelli’s nurse, for getting that set up so quickly). After that, his symptoms stopped progressing. His speech even improved for about 10 days. A few days before his next infusion, he began having more speech problems and talked about his blind spot seeming a little bigger. We couldn’t wait for the next round of chemo.

He had a 4-hour infusion yesterday, Aug. 14th, and has been pretty peppy since. He has bouts of energy (he spent a few hours yesterday and today organizing the garage!) and naps once or twice a day whether he wants to or not. He just goes down for the count, wakes up about an hour later, and is his old energetic self again. He is also full of good humor and jokes these days. I think he is feeling more hopeful again. :-) Me, too.

This is a bit of a roller coaster ride. We won’t know, for certain, if things are working until his next MRI. Also, this treatment is maintained for as long as it is working. It can make tumors more aggressive, so the assumption is that when it stops working, the tumor will be harder to treat. In fact, Phil is taking what is currently believed to be the most effective treatment out there for glioblastoma. So every day we are aware of how precious this time is. It’s like picnicking at the cliff’s edge on a sunny and windy day.

We spent last weekend at the Oregon Coast. Phil’s coworkers gave him a very generous gift certificate to the Overleaf Lodge in Yachats (pronounced Yah-hawts), Oregon(www.overleaflodge.com). We had a beautiful room with all five windows facing the ocean. A pod of grey whales swam just off the coast, and we could see them all day from our windows. We lay on the bed or sat on the patio and watched the sunset every evening. We got up at 6 AM one morning and wandered around the beach at low tide. The tide in that area reaches 9-11 feet, so at low tide there is so much to see. We were literally walking around the ocean floor on smooth sand broken up by huge rocks covered in starfish, anemone, and aquatic plants. It was gorgeous. Phil said he could not recall ever exploring tide pools at low tide. It was wonderful to know he was still experiencing pleasant “firsts” even at this time in his life. We also took two long drives up and down the coast, one of Phil’s favorite pastimes. The whole weekend was JUST what we needed, and it could not have come at a better time. Phil was feeling well; we were relaxed, and we soaked up the salt sea air and natural beauty of the Oregon coast. So HUGE hugs and much gratitude to his colleagues. It was all you had hoped and intended for us.

We have also been receiving cards and photos, letters and emails from all of you. These have been such fun for Phil. I do not think he realized how much he has meant to so many people. As these come in, we sit and read them together. Each time I show him a picture, he responds, “Oh yes!” and then tells me memories of times you have had together. These often match the memories contained in the notes, and as I read these to him, I can see he feels the connection. So thank you everyone for sending these. It is never too late to send them, so if you have not and want to, please feel free. I wish that everyone could have this experience while still alive. And alive he is!

Love to you all.
Phil and Elizabeth