Philography: UPDATE: June 11, 2007

Dear Friends and Family:

Phil and I have returned from our trip to Illinois and Pennsylvania to see family. We wished we could have stayed longer and seen everyone. It felt like a whirlwind tour.

Phil has been feeling better these days. His digestive problems have eased and his appetite is back. He’s gained weight and is feeling much better. He’s finished his second cycle of chemotherapy without any side effects. Now he has 23 days off the chemo. We’ll return to UCSF for a check up on July 2nd and again on July 24.

Since Phil has been feeling better, we have felt more relaxed about everything. It is difficult to forget the gravity of this illness, but one does adjust to a “new normal,” in a way. The people in my online support group often use that phrase, and it makes a little more sense to me now. Although none of us really embraces this idea (we’d rather have the old normal, thank you) there is something to it. Even though, everyday, there are small and even glaring reminders of ways this tumor has changed our lives, lately the “emergency mode” feeling has mostly left us. We have adjusted for now. We understand what to do when he has a seizure, and it doesn’t freak us out. We are more familiar with the ins-and-outs of treatment, how to work with the doctors and nurses, and how to advocate for Phil. His treatment teams at UCSF and here in Eugene continue to be stellar, and we are so glad to be working with them. In addition, Phil continues to use guided imagery, eat well, and make plans for the future.

Now, he is beginning to taper his steroid again. The docs increased it to remedy Phil’s appetite loss. Still, steroids have some nasty side effects for him, including rashes and cognitive problems. He complains that he has more trouble processing information when he is on them, so he’s beginning to taper them again. We are hoping that this time he’ll be able to wean off of them completely. He seems to be recovering from the radiation as well. His energy level has improved, though the after effects of the radiation continue to impact his memory. We remain hopeful that that will improve with time, as well.

He is really handling all of this remarkably well. His recent round of chemotherapy was at more than double the dose he took for the first six weeks. Though it is generally well tolerated, Temodar can cause nausea, fatigue, and other unpleasant side effects. He took it at night before bed for five days, and in the mornings I asked him how he was feeling. He always responded, “I feel really good!” He always awakens hungry and ready for breakfast.

Today, he cracked me up. We went into Trader Joe’s to buy cat food. We bought a month’s supply, and the cashier asked us if we had multiple cats. I said, “we have two,” and Phil said, “yeah, they’ve gotten a lot hungrier since we’ve been riding ‘em.” I’m still laughing at that one.

Wishing all of you a good summer. Check back after the 4th of July for another update.

Love and hugs to you all,
Phil and Elizabeth.

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.