Philography: Update Corner: April 2007

Phil continues to do well with the exception of some short term memory problems and occassional word finding difficulties. These are expected with a temporal lobe surgery and may worsen with radiation. He sometimes has difficulty recalling specific or complex details and recognizing people by their names (although he remembers the person immediately if he sees a picture or hears familiar information about them). While these things take a little getting used to, he seems to be doing VERY well in the grand scheme of things where this diagnosis is concerned. (We are glad that he is working with a brain-tumor savvy nutritionist to help limit, as much as possible, the damage caused by these treatments.) Still, he gets a lot done and seems to be in generally good spirits. He's been working on his Fiat to ready it for sale. A good friend came over to work on it with him this past weekend, and he really enjoyed spending time with him, elbow deep in auto parts.

Phil continues to eat very well. His appetite is good, and he experiences no nausea from the chemo and experimental drugs. He's getting the hang of his medication schedule. Yay! Nine times a day, he's popping something! And all without complaint! (Not sure I'd be so wonderful in his shoes.) We've moved to an all-organic diet following specific recommendations for brain tumor patients. (He's liking the food, too.) He continues to go to work every day, drive, run errands, pay the bills, and wash the dishes - which is no small feat with my cooking! His nutritionist recommended he eat 9-12 servings of fruits and veggies from the whole rainbow of colors each day, so we are always chopping, steaming, and roasting something! And he continues to work with Nancy Hopps who helps him with meditation specific to his condition and his process of recovery. Neighbors fix meals for us about once a week, and that helps, too. So many people have stepped up to help in some way. We are very grateful.

Well, off to bed for me. I'm sure Phil is snoring away by now! If you would like to post a message, or read messages already posted to Phil, please do. Just click on the tiny word "comments" at the end of this post. It's always good to hear from all of you!

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.

7 comments:

AnonymousWednesday, 18 April, 2007
You can leave a comment by clicking on "comments" at the end of the list of posts.
AnonymousThursday, 19 April, 2007
hi you guys!
i'm so glad you're doing this, it's a really nice way for everyone to feel connected to you, even from far away. i'm glad to hear everything is going so well! i'm so thankful for all you've done elizabeth, i can't even begin to fit my gratitude in this little comment box...
armfuls of love for you both!!

i'm still planning on friday night dinner, give me a call! i miss you guys.
AnonymousThursday, 19 April, 2007
The blog is great and so are you and Phil. Once again I'm doing something I don't know how to do.
The blog, that is. Tom knows all the buildings named on the Virginia Tec story. It is good to hear that phil has been working on his car. That takes a lot of thinking.Keep up the good work.
I love you both. Dad
AnonymousFriday, 20 April, 2007
Hey Phil,

Glad to hear that you are doing well post-op. Beth has kept me posted on what is going on. I was sorry to hear that you are sick, and I'm pulling for you to do well. Sorry I can't drive down and see you guys, but Florida is a bit farther away than Seattle. Best of luck man.

Chuck
AnonymousTuesday, 24 April, 2007
Hi Phil,
This is such a great way to keep family up to date on your progress! This is Jen Yoder(Loux), Ron and Bev's daughter. We're living at the farm and I still feel the spirit of your parents, you and your siblings here. We love being here and enjoy the family history that the farm holds. Elizabeth and Pete are keeping us all up to date here in PA. We're all praying for you and your family and we're glad to hear that things are going well. Just wanted to let you know that you'll continue to be in our thoughts and prayers. Blessings.
AnonymousTuesday, 01 May, 2007
Hi,
Thanks for the reminder about the blog. I hadn't looked at it lately. Clicking on the comment works!! Phil had responded to my email, but didn't directly address the "words of wisdom" question. I will keep sending them. They always brighten my day. My friend has done some great healing work with positive affirmations!
AnonymousSunday, 06 May, 2007
Nice blog! Glad to see that Phil is doing so well!