Philography: Update on UCSF Trip, 5.22.2007

This has been a difficult month for us, but our trip to UCSF brought some good news. Phil had been struggling with digestive problems and weight loss, and this had both of us scared. We were eager to get to UCSF and get a check up. His MRI showed that his brain is healing well from the surgery, and the chemotherapy and radiation appear to be doing their jobs. As you know, during the surgery in February, Dr. Berger removed all of the "enhancing" portion of the tumor, the part that was aggressive/malignant. He left behind some tumor cells that were not malignant and the chemo and radiation have been targeting these. The MRI showed that the brain is healing, there is no new tumor growth or enhancement, and the remaining tumor is beginning to shrink a bit. YAY!!! We are greatly relieved. I have learned another lesson about all of this: even symptoms that seem to be tumor related, aren’t necessarily.

Leading up to this visit, Phil and I were both worried by his weight loss and increased problems with short term memory. He had a seizure in the hotel room in San Francisco, and we thought for sure the MRI would reveal something bad. Tuesday Phil had his MRI, blood work, and visit with the NO. In addition to going over the MRI results with us, Dr. Prados, one of Phil's neuro-oncologists, examined Phil. He did well on the neurological tests. Dr. Prados was concerned about Phil's weight loss, digestive problems, and loss of appetite. He recommended some medication changes, and Phil began to improve in all of those areas within 24 hours. Prior to the medication changes, Phil was eating about 2 ounces of food 3 times a day. He just couldn't stand to eat more than that. Since, his appetite has returned to normal, and he's eating plenty. (He's gained 2.2 lbs in the last 5 days!) His sense of humor has returned, as well. Always a good indicator! :-) He says he feels alot better now.

Having completed radiation therapy two weeks ago, Phil continues to recover from that treatment. This recovery is expected to last for 6 weeks to 3 months or more. We've been told that the radiation continues to "work" after the treatments have stopped, and the side effects can worsen. He is feeling some of that in his low energy levels and short term memory problems. (He remembers people and his experiences; he just has trouble remembering names and words for things.)

With Phil feeling better, we have decided to go ahead with our plans to visit Chicago (Elizabeth's neice's graduation from high school) and Philadelphia to see Phil's family. We'll be at each location for 3 days, leaving Oregon on May 31 and returning on June 6th. We hope for smooth travel, enough time and opportunity for Phil to sleep as needed and eat healthy foods, and good conversations with folks we have been missing.

Love to you all,

-Elizabeth & Phil

Basic Timeline....

11/10/2006: First seizure followed by a week or two of testing. Diagnosis of brain tumor followed.
2/19/2007: A follow-up MRI scan showed rapid progression of the tumor, necessitating surgery.
2/27/07: Brain surgery at UCSF Medical Center with Dr. Mitchel Berger. Good surgery and good recovery.
3/28 - 5/10/07: Started clinical trial of daily oral chemo (Temozolomide) and Enzastaurin (an experimental drug).
5/10/07: Phil completed his radiation cycle. Stopped chemo. Continued Enzastaurin.
6/4/07: Started Temozolomide on 5/23 schedule (5 days on/23 days off.)
7/24/07: MRI showed significant tumor progression. Stopped clinical trial and temozolomide.
7/31/07: Began another chemo protocol with CPT11 and Avastin with infusions every 2 weeks.
9/4/07: MRI showed the tumor shrinking considerably!
10/17/07: MRI showed stable tumor. No progression. Speech and vision worse. Avastin dose halved to slow damage to healthy brain tissue.
11/26/07: MRI showed more shrinkage in one area, and no growth in other parts of the tumor. Clinical improvement. Continue CPT11/Avastin at same dose and frequency.
1/25/08: MRI-Stable. All tumor progression is gone. One small area left that continues to shrink. YAY! Continue CPT11/Avastin.
Next MRI scheduled for March 26th.
3/26/08: MRI "pretty much clear;" Stopping tx for one month; then scan again.
July/08: Restarted avastin because of possible tumor regrowth, or other effects of stopping avastin. Infusion every 2 weeks. Scan in one month.
Sept/08: Scan improved. Change frequency of avastin infustion to every 3 weeks. Scan in early October.
10/6/2008: Scan showed some vague changes but tumor seems "stable." Phil feels some pressure in his head, though the scan does not show evidence of this. Will increase avastin to every 2 weeks to see if that will generate improvements. Next scan will be early November.

One of Phil's friends sent this beautiful quote:

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand, the friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” -Henri Nouwen

Memorial Services

A memorial service was held in Blooming Glen, PA at Phil's home church, Blooming Glen Mennonite Church, on Sunday, June 28th at 4:00. It was followed by a burial of Phil's ashes in the family plot across the street from the church.

The service was beautiful. People shared both touching and funny stories of Phil's life, and the music was gorgeous, with all in attendance singing four-part harmony, as the Mennonite churches in that area are well-known for. His very good friends, Rod Derstine, Rachel Blosser Derstine and Dennis Maust provided music, with Rachel on piano, Dennis on mandolin, and Rod singing a piece that brought us all to tears.

It was wonderful to see Phil's family and friends again and to spend time reminiscing with them about Phil.

A big thanks to Phil's brother, Pete, and sister, Elizabeth, for planning the service. Everything went so well. They will also be participating in the service here in Eugene on July 25th.

The Caregivers

The link below will take you to a film made by Dr. Mitchel Berger, Phil's neurosurgeon, and others on the lives of caregivers. Dr. Richardson is a resident who assisted with Phil's surgery and also cared for him post surgery while Phil was in the hospital recovering. I think it took him all of 2 minutes to check Phil's neuro status and incision each morning. He was in and out. So it was interesting to hear him talk about what that is like for him. The hospital floor they show is the one Phil was on after surgery.

The film is a good picture of what we go through as bt patients and caregivers, and I share it with you to give you a closer glimpse of how this is for us.

Click on the link below to view the film.