Philography: Phil is on Hospice now....

Hello friends and family: Phil has decided to stop treatment and start with Hospice. His white blood cell counts dropped in response to his chemo, and they were not rebounding sufficiently to continue on that treatment. Without the chemotherapy, the Avastin doesn't seem to be effective anymore. Phil has increasing weakness on his right side, causing some mobility problems, and he has been walking with a cane for about a week. His neuro-oncologist at UCSF says that his right-sided weakness is definitely caused by the tumor putting pressure on other parts of the brain.

His last MRI, two weeks ago, showed the tumor continuing its progression into the frontal lobe. It has been gradually infiltrating the rest of the left hemisphere and has crossed the midline. Generally, he feels okay. He is walking, though he's wobbly in the morning until he gets warmed up. He still has his sense of humor. He enjoys watching TV (tonight: The Sound of Music and NCIS), and an occasional walk to the mailbox. Last Sunday, we even went for a ride out onto the country roads north of Eugene.

Today, his daughters, Erin and Elena, came over and spent the afternoon with him while I ran some errands. It is so nice to have them here. It feels like "old times," as much as it can with Phil's illness. We watch movies (like old times) and hang out together.

Phil, though wishing he didn't have the tumor at all, does seem ready for what is coming. He is mostly concerned about pain, and he has been assured by the Hospice nurse that they are good at managing the pain and keeping people comfortable. Hospice is great. Starting this week, Phil will get a massage at home once a week. :-) Phil is adjusting to having more people in our house, though it is hard. He seems to adapt well to each development. He has his routines, and he sticks to them as best he can, but some days he's not up to it and sleeps a lot in his recliner. Other days, he seems relatively well. And I'm holding up okay right now. I'm enjoying the time we have left together, and I'm trying not to think too far ahead.

(The photo was taken on Phil's 57th birthday, March 13th.)

Thank you for your prayers throughout this journey. Please continue to pray for Phil to have strength and comfort, and also for all of us, near and far, who love Phil.

Love,

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.

8 comments:

Moira KiltieMonday, 13 April, 2009
Dear Phil and Liz: the hospice staff are wonderful and I believe they will help you both find comfort and peace.
Your friends and colleagues in the Vice President's office think of you often and fondly.
With regards, Moira
AnonymousSunday, 26 April, 2009
Phil's Birthday is 3/19/52 right?
ChuckFriday, 01 May, 2009
Dearest Beth Beautiful and Phil Phantastic,

We are thinking of you and wishing you the best. Hope you are watching lots of good movies - wish we could watch some with you guys.

Love,

Chuck Charming and Azra Amazing
AnonymousWednesday, 06 May, 2009
Dear Aunt E. and Uncle Phillip. :D

I love you both soo very much. And It breaks my heart to know that somebody I love so dearly is in a terrible situation like this. Phil you are a trooper and I'm filled with happiness to know that you're doing okay right now. Well enough to walk with a cane. You are a very strong man and I love you very much. Aunt E. I miss your humor and I'm hoping that we can all drive out to Oregon sometime VERY soon to see you all. I would love that, and I'm sure you would be overjoyed. We could have another belching contest. I miss those. D:
Meanwhile, I ask you to read these verses to Phil and take them to heart. Really think about them. I'm sure you have a Bible in your house somewhere. I'll list the verses anyway.
Deuteronomy 7:15- "And the Lord will take away from thee all sickness.." [If you follow His commands and accept Jesus Christ as your Lord and Savior]
Joshua 1:9- "Be strong and of good courage; be not afraid nor dismayed for the Lord is with you wherever you go"
Exodus 15:26- "He said, 'If you listen carefully to the voice of the Lord you God and do what is right in His eyes, if you pay attentuon to His commands and keep all of His decrees, I will not bring on you any of the diseases brought on the Egyptians, for I am the Lord, who heals you' "
James 1:2- Consider it pure joy, my brothers, when you are involved in various trials.
1 Peter 1:6- You greatly rejoice in this, even though you have to suffer various kinds of trial for a little while.
2 Peter 2:9- Since the Lord did all this, he knows how to rescue godly people when they are tested. He also knows how to hold immoral people for punishment on the day of judgment.
Psalm 1:24- Be strong and take heart, all you who hope in the Lord.
Psalm 78:7- They would put their trust in God and would not forget his deeds but would keep his commands.

I love you so much Aunt e and uncle phil!

God Bless,
Caroline
AnonymousWednesday, 06 May, 2009
I send my warmest wishes to you all.

Kent Stevens (UO)
Don GerhartFriday, 08 May, 2009
Dear Phil and Elizabeth,

Today on this beautiful May afternoon, with bright sun and an incredibly blue, cloudless sky, I wanted to take a moment to let you both know that you are very much in my thoughts.

Phil, I learned so much from you. As I think back on our years of work together, I smile when I recall your sense of humor, your patience with others, your unflagging commitment to fairness, and your gentleness. I remember introducing you to Frances and my sons. I remember as well the Christmas party when you and Elizabeth had a chance to meet my father-in-law and mother-in-law. And I remember too the times we traveled together to New Orleans, to Oahu, and to Santa Fe. Except for my constant efforts to forget my terror as left Santa Fe in a small airplane during severe thunderstorms (!), I hope to carry these memories with me always.

I am so glad that the two of you found each other, and shared your lives with one another.

Thank you for also sharing your lives with us. Your courage, love, and generosity of spirit inspire us.

It breaks my heart to have to say goodbye so soon, Phil. Godspeed.
AnonymousMonday, 18 May, 2009
Dear Phil & Elizabeth,
You both have been in my thoughts often and I just felt the desire to let you know that we are praying for you as you travel this difficult path. It has been so neat to see you these last couple visits to Pa and to experience the love you share for one another. God has blessed you both to have this time together and we pray that you will have many more wonderful times to come. We Love you and wish you Gods Love & His Peace. Love, Bev & Ron Loux
AnonymousMonday, 25 May, 2009
I wish you joyous passage.......