Photo Tribute from the Eugene Celebration of Phil's Life

Remembering Phil

Please join Phil's friends and family for a Celebration of Phil's Life
Saturday, July 25th
4:00 in the afternoon
WESTMINSTER PRESBYTERIAN CHURCH
777 Coburg Rd (corner of Coburg and Harlow)
Eugene, Oregon.

We will continue the celebration of Phil's life with a pot-luck Pie Party immediately following the service. Phil loved PIE, so this is a good time to reach for your favorite pie recipe (or experiment with something new) and bake one last pie for Phil. Savory pies (quiches, vegetable tarts, any main-dish kind of pie, etc.) and dessert pies are welcome.

Many thanks, and we look forward to celebrating Phil's life with you.

At Journey's End - 11:32 PM, June 13, 2009

Phil passed away at 11:32 PM pacific time last night. He was comfortable. He didn't struggle. He just stopped breathing and was gone. It was a relief, in some ways, to know he was no longer suffering. We stayed with him a while before calling the mortuary. They came and got him at about 4:00 AM. Then I curled up on his bed, still warm, and fell asleep.

I will miss him terribly. I am so grateful to have been a part of his life, to have had the privilege of walking this last stretch of road with him. I hope never to forget the lessons I've learned both from him and from this experience we shared.

Thank you for all of your prayers, love, emails, cards, notes, photographs, anecdotes, thoughts, food, time, support, and other gifts over the past 31 months. With a prognosis of 6-14 months with treatment, Phil beat the odds and managed to find himself again and again, his humor, his ability to enjoy life, after each difficult stage of this journey.

We will have a celebration of Phil's life in Eugene in a few weeks. We will also have some sort of celebration in Pennsylvania where Phil is from. Please check the blog for details as we make the arrangements.

Love,
Elizabeth 6.14.2009

still holding on....

Phil continues to breathe evenly and surprise all of us. He is comfortable, sometimes opens his eyes when meds are given, and hasn't had any seizures for a couple of days now. So he looks as if he is just napping comfortably.

Love,
Elizabeth

Update: June 7, 2009

Greetings Family and Friends,

Phil continues to progress, fairly steadily, toward his passing. We are sleeping in the living room now with his hospice bed and our single guest bed pushed together. Our beds are under the skylights, and at a certain time of the day, the sun filters through the maple tree and dapples everything. Phil had always hoped his bed would be beneath the skylights when this time came, and so it is.

As I write this, Erin, Elena, and I are all gathered around Phil. Erin and Elena are working crossword puzzles on the bed next to Phil, and I'm sitting in his favorite recliner on the other side of his bed. It is peaceful right now. Phil is sleeping very comfortably (thanks to palliative care); the cat is outside and not meowing to get in; the oxygen machine is off; and the evening sun is shining in the window. It's the most lovely time of this day today.

Phil woke at about 7:00 AM this morning and awakened me. He was uncomfortable and wanting something that we couldn't make out. After meds and adjusting the sheets and the bed, he settled into a sweet sleep for a while. He awoke thirsty, and as he has some difficulty swallowing now, we gave him a bit of peppermint tea with the little sponges Hospice gave us. My mom brought over her homemade potato salad and and cleaned out my freezer and refridgerator. My colleagues from work have been bringing food by in the evenings, so we have plenty to eat.

My friend from the brain tumor listserv, Karlie, flew up from the Bay area for a few days last week. She was phenomenal in every way, so nurturing and wonderful in caring for Phil (and me and Elena). She also did laundry and dishes and sorting and tidying, and everything else that constantly needed tending to. (We love you, Karlie!)

Yesterday and today, Phil hasn't been eating. His last "meal" was pureed birthday cake and ice cream (all chocolate) for my 52nd birthday on Friday. I was so happy that he survived to celebrate it with us - best gift of all.

As Phil is sleeping a lot today and is likely to from now on, please communicate with us by email (epstuff@comcast.net) (or text message to 541-510-6506) if you wish, at this time, so that the house can remain fairly quiet. This is helpful as Phil is sleeping in the main room of the house and everything is audible from here. It also helps to keep phone line free for family members and hospice workers to call.

We are all very sad, and we are supporting each other and working together, and Phil is comfortable. We have plenty of help from family, neighbors, and friends. More than anything, we ask that you please pour your heart into praying, in whatever way you do, for a peaceful and timely passing for Phil. Thank you to all who have expressed their love through email, phone, good food, and voicemail today. It means a lot that you are thinking of us and have been there for us through this.

Love,

The 3 E's (Elizabeth, Erin, and Elena)

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.

UPDATE: MRI 1.23.2009 STABLE

Hi Everyone:

A brief note to let you all know that Phil's MRI on Monday has come back "stable - no change since the last MRI." So the addition of Carboplatin seems to be doing it's job. Phil is very tired on this chemo, and he finds the fatigue discouraging. He doesn't leave the house often at all, prefering to stay in our toasty-warm home than go out in the winter chill. For the last couple of days, he's had a nasty case of bronchitis which has him feeling very under the weather. I think he is on the mend now. He's taking medicines and resting/sleeping a lot.

I've taken a couple of days off of work to stay home with him. In people with cancer who are on chemotherapy, infections like bronchitis can become very serious if pneumonia or sepsis develops. So i've been wary about leaving him home alone until he is feeling well again. We have kept in close contact with his doctors who have been very responsive. He has such good doctors! I'm so grateful for his care team, both at UCSF and here in Eugene. They are all so easy to work with, are responsive to my concerns, and explain things well.

I hope you are all well. Thanks for your continued emails. We have enjoyed them.

Love,

Elizabeth and Phil.

MRI Update: 1.16.2009

Phil had an MRI on Monday, January 12th, and we received a call from Dr. Butowski at UCSF regarding the results. There is some slow growth of the tumor into the left frontal lobe. This explains the slight increase in fatigue Phil has experienced over the last couple of weeks. Otherwise, he has been feeling well and happy.

Given the new growth, he's been asked to consider whether he would like to add a chemotherapy (Carboplatin) to his Avastin infusions. Since the growth is slow, he has a couple of weeks to decide if he'd like to go back on chemo, or stay with the Avastin, alone, for 2-3 more months before adding chemo.

While Carboplatin has a reputation for causing nausea and fatigue, so do all the other chemos he's had, and he has faired well as far as side effects are concerned. One just never knows. At this point, it is a question of quantity vs. quality of life, and Phil wants to give himself some time to work through what he'd like to do as far as next steps are concerned.

His speech is stable - sometimes better than other times - but overall the same level of functioning. His thinking is very clear. His sense of humor is intact - lately using a lot of irony - which means his abstract thinking is intact, too. :-) He's still funny every chance he gets. He is still up and around, tending to things around the house, watching movies, walking to get the mail, running errands with me, going to the movies with friends. Mostly, because of the cold weather, he likes being home.

He's also coming to terms with death in a way he hasn't before. Not as fearful as he used to feel about it. He believes something better awaits him when he dies, that he'll be able to speak fluently again, and that we will be together again. He worries about being in pain, but his experience with his mother, when she was on hospice, seeing her pain relieved by morphine, gives him a lot of comfort. Still, he wishes it would be a long time, yet, before going. And I know we all wish the same for him.

I wish I could describe how much he means to me, how much I love the person he is, the way he has gone through all of this, that he still laughs everyday and makes me laugh every day. Isn't that surprising given everything?

Please continue to pray for us. We need peace about what choice to make and about what is to come.

Love to all of you,

Elizabeth and Phil

Update (finally!) 10/10/2008

Hello everyone:

Phil has done well on the Avastin to date. We celebrated our 4th anniversary on Sept. 18th! (There have been many times we weren't certain we'd make it to another aniversary, but we did!
:-) We even took a second honeymoon - a week on Maui! We had a beautiful view from our condo. This is a photo of Phil on the beach that our condo overlooked in Kapalua. We had a lovely sea breeze coming through the slats in the louvered windows. It was my first time to Hawaii, though Phil has been there twice. Such a beautiful place. We went to the Maui Ocean Center (aquarium) which has a beautiful exhibit of ocean reef life, and I snorkeled a little. It's just amazing there.

Phil has been having his Avastin infusions every 3 weeks for the past 2 treatments. He had an MRI on Monday and it showed the tumor as stable. We Fed-exed the scans and report to Dr. Butowski at UCSF, and we spoke with him by phone on Wednesday. Dr. Butowski suggested returning to a two-week, rather than 3-week, interval for his Avastin infusions in the hopes of showing some improvements in the next scan. So Phil's next infusion will be on Monday, and his next scan will be in one month.

Thanks for your continued prayers, emails, and hopeful thoughts. We wish everyone a beautiful fall season.

Love,
Phil and Elizabeth

MRI Results 7.16.08

Phil and I traveled to UCSF on Tuesday for his MRI on Wednesday. We spent some time Tuesday evening with Erin and her boyfriend Martin. It was great to see her.

Wednesday morning, Phil had his MRI and we saw his neuro-oncologist. The news is a little mixed. There are changes on the MRI, but it is unclear what is causing the changes. The Avastin that he was taking through March 19 has the effect of "cementing" leaky blood vessels, and stopping it causes the blood vessels to become leaky again. So there is evidence of this leaking. Tumors also have a lot of leaky blood vessels, but they generally have a "mass effect," taking up space in the brain and crowding other brain tissue. This does not seem to be happening on the scan, but that alone does not rule out the possibility of tumor progression. I have seen some slight slowing lately in Phil's thinking and moving around. And Dr. Butowski thought this could be the result of blood damaging brain tissue. So he is going back on the Avastin without the chemotherapy agent added. He'll receive two infusions, two weeks apart, and be scanned again on August 15th at UCSF.

This isn't terrible news, but it is always scary. And Phil has been very discourged since hearing that he will need to have more infusions. He'll take some time to absorb this news and readjust his thinking to continue on with treatments. And then he'll carry on once he gets his mind around this. I'm feeling okay about it. That could be denial, but I wouldn't know. ;-) I think I might be getting the hang of not worrying until we have something definite to worry about - at least some of the time, anyway. Phil will work through what this means and go on. He's always done that.

Thanks for your prayers for us. We continue to need them on this journey. Please also pray for Phil's daughters Erin and Elena, and for Phil's sister Elizabeth, brother Pete, and father Norman.

Love,
Elizabeth and Phil

Update 7/14/2008

Hi Everyone:

We are heading down to UCSF Tuesday for Phil's MRI and appointment with his neuro-oncologist on Wednesday.

This is a photo of Phil and daughter Elena at a restaurant in Philadelphia. We had a great time seeing family on our trip back east a couple of weeks ago. We celebrated Phil's father's 89th birthday with him. And we met Elena and her boyfriend Brook in Philadelphia for dinner and a movie the evening before we headed back to Oregon. Phil and I stayed in the hotel, and the very room, where we spent our wedding night September 18th, 2004. It looked just the same and we had so much fun reminiscing about our wedding and honeymoon cruise. Then we took an early (4:30 AM) cab to the airport to catch a sleepy flight home. After a 3-hour layover in San Francisco expanded to 6 hours, we finally arrived home about 16 hours after we left Philly. We were tired for a week. :-)

Now, we are heading down to UCSF, and would appreciate prayers and warm thoughts as we go in for another check-up. Phil says he is feeling very well and expects no change on the scan. I am always unsure.

A friend of mine told me in an email that she reads about Phil on the blog but that I rarely say anything about me. So a little update: This has been a very difficult road, as you can imagine. It has been teaching me how to handle it, just as my neighbor told me it would from the very beginning. I have my days. It is hard to say these things because when I do, what always springs immediately to mind is how wonderful Phil is, and has been, to be with through this. I laugh a lot because he makes me laugh every day. And he's very helpful around the house. He insists on doing the dishes and laundry and tidying up the house. "It's my job," he says, often refusing to let me help with the dishes. So I pay bills and he washes the dishes - a swap of our pre-bt duties. And our house looks better than it ever has, thanks to him! We are both enjoying that! Also, his thinking has been so much clearer since stopping the chemo, that we can talk about things in greater depth. Sometimes, it actually feels like the old times before all this happened. He still has aphasia and some difficulty communicating, but we are so used to it that we forget sometimes. And that has been really wonderful for me. I love conversations with him.

So I'm hanging in there, and hoping that we can go on like this, or better, for a long time.

I'll post in the next couple of days about his test results.

Take care.

Love,

Elizabeth and Phil

Feeling happy and well - 5/20/08

These days Phil is feeling so well. His energy level and appetite continue to be good. His hair is growing back, and he's very happy about that. (You can click on the photo to enlarge it. You'll see that his beard and mustache are back to normal and he actually has a shadow of a hairline back. And he has eyebrows again!)

This is a picture of him at the University of Oregon Counseling and Testing Center, where I work. When he's not in my office or taking a walk on campus, he often sits in the skyway listening to music and enjoying the warm sunlight coming through the windows.

We've scheduled our next trip to UCSF for Phil's MRI on June 4th. We'll be going to Pennsylvania to visit family from May 30th to June 3rd. Then we'll fly to San Francisco for his MRI on the 4th and a flight home that evening. We are, naturally, hoping for more good news. It has been wonderful to see Phil's fun spirit emerging from a long year of chemo.

Take care, all.

Love,

Elizabeth and Phil

MRI results from 4.30.2008: More good news!

Phil's MRI looked pretty good this time, too. The doctor wants to "watch him closely" and advised that Phil go back to UCSF in one month for another scan. There are some kind-of-iffy places that are likely not tumor, more likely the result of stopping the Avastin (the treatment he was taking). No way to know for sure except to watch it monthly, and the MRI machines at UCSF are a lot stronger providing greater detail than our local machines. So we'll go back down to UCSF the last week of May for another MRI.

This is a tricky time in the treatment course for this kind of brain cancer. Stopping treatment is generally considered “bold,” but Phil’s neuro-oncologist (NO) at UCSF is wary of keeping people too long on the kind of chemo he was taking. It leads to liver failure and other nasty things. So he encouraged stopping chemo and monitoring him closely with monthly scans. I appreciate that he is conservative and not willing to ravage Phil’s health unnecessarily to keep the tumor at bay. If a scan shows a recurrence, then he’ll start another kind of chemo. In the meantime, he can rebuild his health a bit and enjoy life. Eventually, one runs out of treatment options and that’s the hard part.

For now, though, Phil is feeling so well, and despite his speech and vision problems, seems more like his old self, in some ways, than since his surgery over a year ago. Some of his old routines and preferences are springing up. He has a lot more initiative and energy. And he thinks more clearly than he did on the chemo.

He’s taking a lot of supplements, some of which are known tumor-fighters and a bunch that are designed to increase oxygen to the brain tissues, making it less amenable to tumor cells (which prefer a low-oxygen environment) Anyway, he’s feeling really well these days. It’s amazing what not being on chemo can do for one’s energy level and mental clarity (except for right now – he’s asleep in my office). So we are enjoying this time and feeling fairly relaxed, actually. And his hair is growing back! His beard and mustache are getting thicker again, too. He's really delighted about that.

Thanks to all of you trusty souls who keep checking in to see how Phil is doing.

Love,
Elizabeth and Phil

Sophie

We had to put Sophie "to sleep" today. Her kidneys were failing. We are missing her around the house this evening, missing her crawling into our laps to nap, missing her sitting on her pillow by the fireplace, missing her routines. We also feel a sense of relief that she isn't miserable anymore.
But we miss her all the same.

She had several nicknames in her 16.5 years, most notably, Sophie Dophe, Sophie Winer, and Soybean. She was "a honey bun," as my mom said. She tended to be shy, but opened up as she got older. She also was very attached to Phil. In fact, she picked him for me. When Phil came to visit me in Chicago for the first time, he took his shoes off when he came in. In a matter of minutes, Sophie was rubbing her face all over his shoes - for about 10 minutes! I had never seen her do that to anything that didn't have catnip on it. (And Phil isn't that conniving....I don't think. ;-) She was comfy with him from the start. I took this shot of them napping together two days ago. He was great with her. We were both with Sophie when she was euthanized. Each of us held her before hand, and the vet let me hold her while he gave her the injections. We both were saying this evening that we wish we could hold her again.

We head to San Francisco tomorrow morning. We postponed our drive down for a day so that we could see what was going to happen with Sophie. So we are off tomorrow morning, spending one night on the way down, and then arriving in SF on Tuesday. MRI on Wednesday. We plan to see Erin and her new place of employment (a restaurant called Citizen Cakes- www.citizencake.com) where she is now the head pastry chef. So we are eager to see her and have dinner at the restaurant.

We hope all is well with you (and your cuddly animals).

Love,
Phil and Elizabeth

Still doing well....

It has been three and a half weeks since Phil's last chemo, and he seems to be doing very well. He's taking walks, going to lunch with friends, and generally feeling better. His speech is holding steady, and his mind seems sharper. He's processing information more quickly and has a lot of ideas and initiative to do things. So good to see him feeling better.

His next MRI is scheduled for April 30th. We plan to drive down to UCSF taking the coastal route from the California/Oregon border down to the Golden Gate Bridge. Woo Hoo! We'll go through the giant redwoods and see alot of beautiful views of the Pacific coast.

For now, we both feel relaxed and are enjoying how well he is doing. We hope this finds you well, too.

Love,
Phil and Elizabeth.

"Pretty clean scan" 3/26/2008

Phil had his MRI and consult with Dr. Butowksi today. He said the scan looks “pretty much clean.” There are some “iffy” spots but they have remained the same for a few months now, leading the doc to think it could be scarring from the radiation. Phil is having some negative side effects from being on the Avastin for several months now (it decreases circulation to all organs in the body), and with the scan looking as good as it does, he recommended stopping treatment for a month and then getting another MRI. He said that if the tumor begins to grow, Phil will notice changes in his speech. If that happens, he can start the treatment again, or get a scan sooner than one month. If there are no changes in his speech, then he said the scan should be clear as well. He said we are entering fairly “unchartered territory,” so it is not without some anxiety, but we aren’t feeling that right now. Just glad for a clean scan and no chemo next week!

It is a really beautiful today in San Francisco. We did everything a little differently for this trip. We drove down, instead of flying, and we are staying in a little neighborhood hotel near the hospital. A lot of UCSF patients and their families stay here. It's not fancy, but it is clean. :-) After we arrived, we discovered that the train (the one that runs right in front of our hotel room window) goes all the way to China Basin where Phil has his MRIs and then runs all the way back to the hospital. So we had door-to-door public transportation, and it was a nice ride. Saw some beautiful scenes of the bay enroute.

Thanks to all of you for keeping us in your prayers and hoping for the best for Phil. He's so happy today, and I feel pretty relaxed, too. It's good to enjoy these times. We've learned through this journey that those early days before Phil's surgery, when we were so in shock and thinking that it was all so horrible, those were the good old days when Phil could still speak pretty much as he always had, he was anything but tired in those days, and he had all of his hair! Who knew so much would change? So we try to focus not on what he can't do, but on what he can, and that helps us.

For example, he's still really funny. When we were driving down through Northern California, I was listening to a book on tape. He didn't want to hear it, so I put an earbud in one ear and listened to it that way. After a while, he tapped me on the shoulder and started to gesture and mouth words as if he were innocently speaking out loud. It cracked me up......okay, maybe you had to be there. It was just that funny little mischevious Phil-look in his eye and that little smile he gets when he's trying to crack you up? That. Trust me, it was really funny.

Take good care of yourselves and each other. A message from the trenches.

Love,

Elizabeth and Phil.

"Gimme a head with hair...." -Phil

3/1/08: Phil's hair has finally fallen out from the chemo. His beard is slowly going to, and he is hoping and praying that the mustache stays put. He's had a mustache continuously since he was 19 years old, and he's been a little sad at the prospect that that might go, too. Bald looks good on him, but he's the last to know it. He just misses his hair, and who can blame him? He had great hair. He did say, yesterday, that he'd rather be bald than dead. So he's got some perspective on the matter. And a little humor about it, too.

Phil had the flu for about a week. He's definitely been feeling better than he did a few days ago, so he's on the mend. We are hoping this won't impact his ability to have treatment on Wednesday.

We've had really beautiful weather here over the past two weeks. We've had some grey, rainy days, but also some warm (56 degrees), sunny days that have cheered us up. Oregon is a beautiful state, and even moreso on a sunny day.

How are all of you doing? We'd love to hear from you. epstuff@comcast.net.

White count improved!

2/17/2008: Sorry for the delay in updating everyone. Phil's blood counts were up enough to allow him to have his chemo treatment on the 6th. It was a relief. These kinds of tumors can grow rapidly, so delays in treatment tend to put us brain tumor caregivers on edge. Phil had a day-long bout of the hiccups following his infusion. These subsided everytime he fell asleep, so he napped as much as he could that day. By the next morning, they were gone. This is a side effect of the chemo and can last a lot longer and keep people awake at night. So once again, Phil continues to tolerate treatment with minimal side effects when they occur. He is scheduled for his next infusion this Wednesday, the 20th.

Phil's brother, Peter, visited for a few days this past week. He and Phil drove to the coast together on Friday and had some clam chowder. Pete also suggested we all go to see the documentary STEEP at our local independent movie theater. It was a fascinating movie about extreme skiing. If you get a chance to see it, please do. It is astonishing what these men and women do.

Well, take care everyone. We appreciate your thoughts and prayers that his blood counts continue to improve and, well, remission would be lovely, too. Thanks.

Love,
Elizabeth and Phil

White Blood Cell Counts and Other Stuff 2/1/2008

We hit a glitch on Wednesday when Phil's white blood cell counts were too low. He was not able to have his CPT11 and Avastin infusions. The oncologist recommended waiting one week and retesting. If his blood counts are up, he'll be able to go ahead with it. I called Jeanne Wallace, Phil's nutritionist, and she recommended a couple of supplements that should help to bring up his blood counts and guard against infections. So he has started taking those.

Naturally, when there is any deviation from the expected course, it can be disconcerting. The oncologist assured us that this is not unusual and waiting a week should do the trick.

Apart from blood counts and infusions, occassionally, Phil feels "bummed" about losses he has experienced. Though his speech seems more fluent these days (many have told me so, and I've observed it, too) he sometimes feels sad when he observes how much harder it is for him to communicate something that he used to communicate effortlessly. It is the contrast between his former level of functioning and his current one that saddens him at times. And he really misses his beautiful hair. Fortunately, he has a beautiful head, but he doesn't think that is much consolation. :-) I don't blame him really. He doesn't ever seem to get stuck, though. There is always something he's interested in doing or seeing or listening to. And his speech is improving, so he's feeling more sociable.

On another note, we are quite happy that the 4th (and final..*sniff*) season of LOST has started. :-) You might recall that we spent the early part of our bt journey watching the 2nd season of LOST on DVD. I'm sure there is a double meaning there somewhere.

Hoping that this finds all of you well and close to the ones you love.

Love,
Elizabeth and Phil

A Good Day! January 25, 2008

Dear family and friends:

Phil had another MRI today, and the scan looks good!!!! There is no new tumor growth. In fact, the doctor said that all of the tumor that was involved in his July recurrence appears to be gone. There is one small spot of tumor remaining (it was left in during Phil's surgery in February) and that appears to be shrinking each time he has an MRI.

The neuro-oncologist gave Phil the option to stop treatment now and scan again in one month to monitor for any rebound tumor growth, or to remain on treatment for 2 more months and then stop treatment at that time. The NO answered our questions, and Phil decided to remain on the treatment for 2 more months before stopping. So he will have 4 more infusions (one every two weeks) and then another MRI to check his status. The NO said that, while there is an idea circulating that once you stop Avastin, the tumor can rebound dramatically, he has not been seeing this lately. So far, every one of his patients who has stopped the Avastin has been able to hold steady for a while.

Phil continues to improve cognitively. He was not able to correctly name numbers a month ago. In the last two weeks, he began adding the tip to the bill when we eat out, and in the last week, he has also calculated the tip a couple of times. He's been on target each time. These improvements are a good sign and we welcome all of them.

We started the day having breakfast with our friend, Karlie, who drove into the city through rainy weather to meet us. Then she gave us a lift over to the China Basin campus where Phil gets his MRI. It is always great to see her.

Once we had seen the doctor, we rode the MUNI (the commuter train) from the doctor's office to the station near our hotel. Phil and I stood the whole way, and he had the energy and stamina for it - even after an MRI day. The driver gave everyone a good 5-minute scolding for one thing or another, and that, paradoxically, put everyone on the train in a good mood. She was the proverbial cranky mom lobbing her complaints into the back seat about our slowing her down and holding her up, and we were all the naughty children in the back, some eyeing each other and giggling and others volleying justifications that largely went unheard. Things quieted down after a while, and everyone was generally friendly. When we reached our stop, we had just a short walk from there to our hotel. Everything felt "normal," for a change, and that felt good. Even the weather in SF has felt "normal" to us Eugenians: Rainy and very gray.

Thank you for your prayers and good thoughts for us. We feel them.

Love,
Elizabeth and Phil

More Good News! 11/26/2007

Greetings from San Francisco!

Phil had his MRI and visit with the neuro-oncologist today, and we learned that his tumor has decreased in one area and that there is no tumor growth in other areas! YAY!!! This visit has given us both a boost, as the tumor continues to respond even with half a dose of the Avastin. Phil's speech continues to improve a little at a time. He just seems better all around.

We arrived in the Bay area on Saturday morning and spent the day and evening with my family who live in Sunnyvale and my sister, brother-in-law, and neices (Miranda and Mattie) who live in Santa Barbara. We watched the UVA vs VA TECH football game. My father, brother and sister all went to UVA, so it was a little disappointing to see their alma mater lose. One of my other brothers went to VA TECH, so one fan was happy about the outcome! Thanks to Tom and Marty & Gail for chauferring us around. It was great to spend time with all of you.

Sunday morning, Phil and I had breakfast with Karlie, our friend from the online support group. We met her four wonderful children and had a great time with them. Her kids, like her, are very bright, playful, and a lot of fun. When I asked someone to take our picture, the kids jumped up and exhuberantly ran around the table to wrap themselves around Karlie for the picture. It was a real joy to be with them.

With the good news, we feel more relaxed than we have in a long time. We've had six good weeks of getting back to some old routines and not living in a state of anxiety all the time. With today's news, we feel we've been granted an extension and can really focus on living instead of "adjusting and adapting" all the time. We are both looking forward to that.

Tomorrow, our favorite San Francisco cab driver, Abi, is picking us up at 5:30 AM and taking us to the airport for an early flight home, so we are going to watch a Sherlock Holmes episode and go to bed early. We are looking forward to getting home to our kitties and our cozy living room.

Love,
Phil and Elizabeth

Happy Thanksgiving!

Today, we are so grateful for LIFE. :-) Happy Thanksgiving to all of you. Phil is doing so well. He seems to be improving in some ways. Phil is really looking forward to the food. He woke up this morning and started talking about what he was looking forward to eating tomorrow, reminiscing about his mother's Thanksgiving dinners. He's in such a chipper mood.

Phil had another chemo infusion today. He and I watched the 1960-something version of the movie "Voyage to the Bottom of the Sea." It was great! We loved it. Cracked up at some of the special effects.

We wish you all a happy Thanksgiving and hope that you are able to share it with someone you love. We are glad to be doing that this year. Seems like a miracle. Yay!!!

Love,
P&E

Update: November 12, 2007

Greetings Everyone:

I just thought I'd take a few minutes to give you a little update.

Tonight we are sitting in the living room enjoying the fire. Phil is watching "The Predator." He has been doing well since starting the half-dose of Avastin and same dose of CPT11. His deficits appear to have stabilized. That's a good thing. He has ups and downs between infusions but always seems to be at his best, both in energy level and speech, in the few days before his next infusion. This suggests to me that the ups and downs may be associated with side effects of the treatment. I'm not sure if that is the case, but thinking so makes me feel better.

He always feels more energetic on the days that he exercises. Our neighbor Maureen has begun going for a walk with him on Monday afternoons, and he has really been enjoying that.

I am enjoying being back at work half-time. Sometimes it is hard to be apart, but Phil does well at home, and we keep in touch by phone while I'm at work. He cleans up around the house, does the laundry, watches movies, checks the mail, and sometimes takes the bus to campus to meet friends or me for lunch. Sometimes he takes the bus to the barber shop. He has enough hair to cut now! Dr. Monticelli said his hair has grown back in record time, post radiation. In fact, it never ceases to amaze me how well Phil's body has tolerated the treatments he has had. His blood levels are relatively good and he hasn't had any of the more uncomfortable side effects (nausea, diarrhea, etc.) He's amazing that way.

Phil's next MRI will be at UCSF on the Monday after Thanksgiving (the 26th). Of course, we are hoping for news of a stable tumor but will deal with whatever comes. Please continue to keep us in your thoughts and prayers.

We have enjoyed the emails we've received from friends and family. It is always good to hear news of how all of you are doing and what is new in your lives. It keeps our world nice and big.

Love,

Elizabeth and Phil

epstuff@comcast.net

Update: 10/26/2007

Greetings Friends and Family:

Phil's MRI, on Wednesday 10/17, looked good as far as tumor is concerned. The tumor doesn't appear to have grown at all. Phil's neuro-oncologist also assessed Phil's deficits. His vision is worse in the right eye, as now he has no peripheral vision on that side - upper and lower quandrants. He didn’t do so well on the language assessment either. (He couldn’t repeat “No ifs ands or buts” or “It’s a sunny day in San Francisco.”)

Dr. Butowski explained that he has seen a worsening of deficits in other Avastin patients, as well. Avasitn not only cuts off blood supply to the tumor but to healthy brain tissue too.
The plan, now, is to cut the Avastin dose in half. If Phil's deficits worsen, Dr. Butowski recommends stopping the treatment and watching Phil closely with monthly MRIs for as long as the tumor remains stable. He has followed this course with several Avastin patients, and all but one has remained stable so far. We’ll just take it one infusion at a time. If and when it recurs, he may be eligible for other clinical trials.

We followed our trip to San Francisco with a trip to Philadelphia to see family and friends there, flying out of San Francisco to Philly the day after Phil's tests. While the flight seemed long and tiring, it was worth it to see everyone. We spent a good deal of time reminiscing about Phil's childhood. Pete took Phil on a couple of long drives around the area to see their old haunts. Elizabeth told me stories of what Phil was like in elementary school and high school. (Adorable!) We also spent some time with Phil's father going through some family heirlooms with the family. We found Phil's first grade "yearbook" and some class photos from his senior year of high school, complete with graduation messages on the back of each, all of which celebrated Phil's sense of humor. :-) I'm happy to report, he still has it!

We also went to the church of which Phil was a member for much of his life, Blooming Glen Mennonite Church. Wow! Can they SING!!! We are always moved to tears when we visit there. We were welcomed with such a warm embrace. Phil spent some time with all of his dear friends from the small group that he had been a part of when he attended that church. (See photos.) They have kept in touch with Phil over the years, and throughout his illness have sent emails and photos checking in and giving us news of their lives. His moments with them after the service meant more to him than I can express here. They seemed to change his whole outlook. He gained new courage to spend time with people, despite his difficulty communicating, because his friends are so important to him.

Now we are happy to be home. We have spent the last 3 months completing some overdue home maintenance. When Phil's tumor progressed in July, we decided to fast track some projects we had planned to complete on a longer time table, so that Phil could enjoy them while home. Frankly, we were trying to cram our lives into what little time we have together. We and several other neighbors replaced our adjoining fences. We also had the exterior of the house painted. We replaced our old and not-so-fresh carpet (thanks to Sophie-the-cat and other pet accidents), with a pretty laminate flooring, and Phil finally got his long-wished-for gas fireplace insert. (In fact, he's napping happily in front of it as write this.) It's been great. We had wonderful contractors for the most part. Our painter, flooring installer, and fireplace installers were wonderful. No problems. (How often does THAT happen?)

So we are settling in to Fall and looking forward to the holidays. We wish you all health and appreciation for all that is good in your lives as we approach Thanksgiving.

Love,
Elizabeth and Phil.

Update: September 8, 2007 - It’s working!

Dear Family and Friends:

After a very scary visit to UCSF in July, Phil started CPT11 and Avastin chemotherapies in the hopes that it would shrink his tumor and give him more time. It’s working! Check out the MRI images! After only three infusions, Phil’s tumor has shrunken quite a bit. Phil’s latest MRI showed the tumor shrinking and the swelling gone. The neuro-oncologist, Dr. Prados, seemed very pleased with the results and recommended Phil continue the chemo infusions every other week for now. He also recommended stopping the steroids – yay! So Phil is tapering those and hoping to be completely off them within the month. That allows him to taper slowly and reduce the chance of rebound inflammation. Dr. Prados also told us that it would be highly unusual for the chemo to fail in the next 6-12 weeks, giving us some time to just relax and enjoy this good news.

Phil continues to have difficulty with speaking, but his energy level is good and he enjoys doing things. For the past 6 weeks Phil’s daughters Erin and Elena have postponed work and travel to be here and spend time with Phil. We have had a chance to spend a lot of good time together. With the good news, Erin has returned to her work as an instructor for Western Culinary Institute in Portland, and Elena is off to New York City to live. She has several friends there and looks forward to getting settled there. I will be going back to work half time for now. He’ll spend some time alone at home (he’s cleared for that), and he plans to ride the bus to campus to meet me and run whatever errands he wants to run in the afternoons. He is looking forward to a little less focus on his condition and more focus on living, and now is the time for that. He has been seizure-free for two months now, and other than his speech difficulties, he is much better. He’s having no significant side effects from the chemo. He’s good. If you’d like to email him, please send your email to epstuff@comcast.net.

Thanks again for your thoughts and prayers!

Love,
Elizabeth and Phil

Update: September 8, 2007 - It’s working!

Dear Family and Friends:

After a very scary visit to UCSF in July, Phil started CPT11 and Avastin chemotherapies in the hopes that it would shrink his tumor and give him more time. It’s working! Check out the MRI images! After only three infusions, Phil’s tumor has shrunken quite a bit. Phil’s latest MRI showed the tumor shrinking and the swelling gone. The neuro-oncologist, Dr. Prados, seemed very pleased with the results and recommended Phil continue the chemo infusions every other week for now. He also recommended stopping the steroids – yay! So Phil is tapering those and hoping to be completely off them within the month. That allows him to taper slowly and reduce the chance of rebound inflammation. Dr. Prados also told us that it would be highly unusual for the chemo to fail in the next 6-12 weeks, giving us some time to just relax and enjoy this good news.

Phil continues to have difficulty with speaking, but his energy level is good and he enjoys doing things. For the past 6 weeks Phil’s daughters Erin and Elena have postponed work and travel to be here and spend time with Phil. We have had a chance to spend a lot of good time together. With the good news, Erin has returned to her work as an instructor for Western Culinary Institute in Portland, and Elena is off to New York City to live. She has several friends there and looks forward to getting settled there. I will be going back to work half time for now. He’ll spend some time alone at home (he’s cleared for that), and he plans to ride the bus to campus to meet me and run whatever errands he want to run in the afternoons. He is looking forward to a little less focus on his condition and more focus on living, and now is the time for that. He has been seizure-free for two months now, and other than his speech difficulties, he is much better. He’s having no significant side effects from the chemo. He’s good. If you’d like to email him, please send your email to epstuff@comcast.net.

Thanks again for your thoughts and prayers!

Love,
Elizabeth and Phil

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

Update: July 27, 2007

Dear Friends and Family,

Well, Tuesday we got bad news about the MRI results from Phil’s neuro-oncologist at UCSF. I thought it best to lay it all out here, and Phil agreed, so that folks could be prepared. Phil’s tumor has progressed significantly in the past 3 weeks. Dr. Butowski says it is behaving more like a sarcoma now, infiltrating the healthy brain tissue in search of a better blood supply. It has spread out over his whole temporal lobe. What began as a tumor in the anterior part of his temporal lobe now extends all the way to the back. It is inoperable. I asked what his prognosis would be if he did nothing to treat it. Dr. Butowski, after giving all the caveats about “hard to say…all tumors are different….respond differently…etc.,” said that without more treatment, he would have “a few weeks, maybe months.” He recommended a six-week trial of CPT11/Avastin as the next course of action. This combination of drugs targets multiple factors related to tumor growth and is very aggressive in killing tumor cells. It has been shown to be remarkably effective for some in clinical trials, sometimes adding several months to a person’s life. (Yes, in this brain tumor world, several months is considered a remarkable response.) If the tumor (which is behaving atypically now) doesn’t respond to the treatment, then things are likely to progress fairly quickly. Dr. Butowski said that it will be noticeable before the CPT11/Avastin treatment is over (it lasts six weeks) whether it is working or not. He’ll start as soon as the insurance company gets on board.

We are in shock. We came to San Francisco yesterday expecting a fairly routine check up (if there is such a thing with GBM), since we had just been here 3 weeks ago and the MRI seemed “stable.” Phil has had more difficulty over the past 2 weeks, both talking and understanding the things I say, and we thought these were related to the increases in his chemo dose and one of his seizure medications. So we did not expect to hear that the tumor had grown.

I asked to speak with Dr. Butowski alone first because I had wanted to ask some difficult questions without worrying Phil, questions about next course of action should his current treatment fail. I thought I was getting ahead of the game, preparing for something that would occur 6 months to a year from now. Dr. Butowski showed me Phil’s MRI scan, and I could see the tumor stretching all through his temporal lobe. I’ve never felt so angry at anything in my whole life as I felt at that tumor. Dr. Butowski answered all of my questions very thoughtfully. He was very sensitive and took his time. I was so grateful for that. Then, he went to get Phil. When Phil came through the door, he looked at me and could see I’d been crying. He sat down. Dr. Butowski gave him the news that his tumor had grown, and Phil said, “how could it do that?” He was completely taken off-guard. Phil had been so positive that he would just get better and be a long-term survivor. (We all hang on to that hope, and Phil’s attitude has been so great throughout, despite all he is going through.) As the doctor explained things, Phil grew so quiet, and he was fairly quiet the rest of the day. We talked more openly about death and his feelings about all of this. So hard. (Dr. Butowski had told me that his speech and his ability to understand speech would get worse over the next few weeks if the next treatment doesn’t work, so Phil and I need to have these conversations now.) We are both in shock. We are just taking it a moment at a time right now.

Dr. Butowski doesn’t recommend that he be home alone now, and I can’t imagine being apart from him for so many hours in the day when we may have so little time together. So I will be staying home on leave with him. Our trip to Japan has been canceled, too.

There is a possibility that the CPT11/Avastin will give us some more time. We sure hope so. I didn’t expect us to get this sort of prognosis for about another year. With this news, he has been feeling like he can’t handle a lot of contact with people for right now. He isn’t able to email anymore because of his language problems and difficulty recognizing folks by their names, though he remembers everyone when he sees a picture of them. I know that he would be cheered by hearing from everyone who knows him or has known him personally or through his blog (www.philography.blogspot.com). I want him to feel connected to everyone, to know that he is not alone even if he has trouble communicating. And I want him to SEE how connected he is to so many people who love and care about him. So I have a request:

If you would be so inclined, would you send/email a photo of yourself with a brief note? I ask that you do this soon, if you would. It would be so wonderful for him to hear from everyone right away, if possible, while he is still able to understand. Don’t worry about it being a “good picture” of you. It will be beautiful to him and to me. I will fill the wall in the bedroom with all of your faces and messages. This will mean so much to him. If you have a memory of being with him, he would love to hear that. He talks often about his past and the people he has known. I seems to love reminiscing now. I haven’t told him about this request, so it will be a wonderful surprise for him. He needs a boost right now, and short of a cure, this ought to do it!

Email to: eloux@comcast.net

Thanks so much for all your prayers and, in advance, for your cards, emails, and photos. They will mean so much to him.

Love,

-Elizabeth and Phil.

Update: July 9, 2007

Well, we’ve had another visit to UCSF. Phil’s MRI continues to be “stable.” That means that he does not appear to have a recurrence of tumor, and the remaining tumor area has not grown. This is GOOD NEWS where brain tumors are concerned and suggests that the treatments are working.

For the past month, Phil has struggled with fatigue, more difficulties with word-finding and some confusion at times. He’s found this frustrating and a bit depressing. Several things could be contributing to this: an increase in his dose of seizure meds, the higher dose of chemo on his new chemo schedule, tapering the steroids, and post radiation side effects (which can persist for up to a year). So we’ve made some changes to his medication doses to see if that helps. Still, the chemotherapy tends to make word-finding much worse, and for about 7-10 days out of the month, communicating is more difficult for him than the rest of the month.

Nevertheless, over the past week or so, Phil has been in a very good mood. Tonight, we had a good time going out to the Eugene Public Library hear the Oregon Old Time Fiddlers play. Phil has also been working on his FIAT and getting closer to having that finished and ready to sell. All-in-all, he seems to be enjoying having the day to do whatever he wants. My mother drives him on errands when I’m at work, and that is a big help. He really enjoys spending time with her.

Phil’s last day of work was June 30th. His colleagues gave him a very nice reception and they gave Phil a coupon for a weekend at a great get-away on the Oregon Coast. Isn’t that a great idea?! We are really looking forward to it.

While in San Francisco this time, we spent the day with some of my family members who live in Sunnyvale. We saw my father, two of my brothers, my sister-in-law, and my neice. This was the first time Phil met my brother Marty. Marty took Phil and I on a couple of really beautiful scenic drives while we were there. He drove us out to the coast through really beautiful countryside. Phil used to live in the Bay area, so he really enjoyed seeing the sights again.

We will post another update after our next visit to UCSF July 23-25 when Phil will have another MRI and a visit with the neuro-oncologist. More news then.

Thanks for caring and checking our website!

Love,
Phil and Elizabeth

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.

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

UPDATE May 11, 2007

Greetings!

Yesterday was Phil's last day of radiation. Woo Hoo!

He's very glad to be finished with this cycle, though he will miss the great folks at Willamette Valley Cancer Center. They really made the whole thing tolerable. He had a good radiation oncologist who worked closely with UCSF to design the radiation treatments, and the folks who administered the radiation treated him wonderfully. Dr. Fryefield commented that Phil has tolerated the radiation very well, and he has. He hasn't had many side effects or complications so often associated with radiation. His skin isn't sunburned (thanks to Calendula Oil!), his ears are fine, and he's in good spirits. He's been sleepier than usual. An hour-long nap in the morning and again in the afternoon seems to do the trick. Short term memory seems a little worse since the radiation, but not as much as we had anticipated. The radiation techs sent Phil home with his mesh mask, suggesting he "drive over it" if he wants to. :-) It is interesting to see the areas marked for radiation. It fully explains his new hair growth pattern. ;-) It's a little punkish.

Phil has continued to go to work for most of his Radiation cycle. He has noticed that the short term memory deficits, resulting from surgery and radiation, interfere significantly with his ability to remember the kind of intricate detail his job entails. He has made the decision to step down from his job on June 30th. It's been a difficult decision in some ways. He was so productive pre-surgery and was really enjoying his work. We had both hoped that his short-term memory problems would clear up as his brain healed from the surgery. However, the radiation oncologist informed us that radiation to the temporal lobe causes persistent short-term memory problems. So Phil is making adjustments and planning things to do when he is no longer going to work each day. If you'd like to email Phil, you can write to him at epstuff@comcast.net.

Now, Phil has begun a two week break from chemotherapy and the experimental drug. We will be going to UCSF for an MRI and blood work on May 22nd. If all goes as planned, he will begin chemotherapy and the experimental drug again on May 25. He'll take the chemo on a 5/23 schedule (5 days on, 23 days off) for 12 months, and the enzastaurin daily for 12 months.

We hope that this update finds all of you well and enjoying some fine spring weather.

Love,
Elizabeth and Phil

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!

Update: 2/23/07

Hi Everyone:
I wrote the following email earlier this week, and since then we have had some rapid new developments. To save time, I’ll leave the email, below, intact, and just add this new information here.
Phil had an MRI on Monday, and the results show that the tumor has gotten worse in one particular spot, especially. The swelling in the left temporal lobe has worsened considerably as well, and the swollen brain tissue is starting to push on the brain stem. Dr. Kokkino was very surprised at the rapid progression, as were we, and recommended surgery as soon as possible. The MRI studies were overnighted to Dr. Berger at UCSF. He looked at them today and recommended we have surgery this Monday to remove the part of the tumor that looks high grade. So, we are flying down to UCSF on Sunday, and Phil will have surgery on Monday night. Dr. Berger has two other neurosurgeries that day, so please pray for him to have a steady supply of energy and clarity throughout the day and evening. The doctor recommends staying in town for 4-5 days post surgery to see that everything is going well, so we’ll be in San Francisco from Sunday night until Tuesday, March 6th.
Today, the neurosurgeon started Phil on steroids to reduce the swelling in his brain. He’s had one dose so far. They can be a little tricky, but we are hoping that he will have little to no side effects from them. He really needs them right now, so I’m glad he is taking them.
Please think of us over the next week and a half. Phil’s daughters could use your thoughts and prayers right now, too. Feel free to email notes of encouragement and whatever you’d like between now and tomorrow night. I’d like to print your emails out and take them along for him to read and be encouraged by.
Thanks so much!!!
-Elizabeth

Dear Friends and Family:
It has been difficult to put the energy into writing an update lately, and with little going on regarding medical updates, we decided to wait for more news before sitting down to send something. We apologize if this has worried any of you. Please remember that you can always check in with us if you are worrying and need some information.
We have taken some very important steps in the past month. We found an online support group for caregivers of people with brain tumors, and they have been so helpful. I felt desperate to hear some positive stories of biopsy, and I decided to post a request for just that. I received 21 responses, all encouraging and full of information on that topic. I read them to Phil (as we both cried our eyes out), and we felt so much more at ease about moving forward. The first email we read said that the biopsy went very well and another included her husband’s subsequent surgery that also went very well and without any difficulties. We learned that brain tumor patients who are treated at the major Brain Tumor Research Centers (like Duke and UCSF) generally live longer than those treated at local hospitals.
And we learned of a nutritionist in Utah (Jeanne Wallace, Ph.D., CNC) who has treated 650 brain tumor clients, most of whom have outlived their doctor’s predictions. Her partner has a glioblastoma multiforma (GBM), “the worst of the worst.” That diagnosis typically carries a prognosis of 6 months to a year to live, yet she is still doing well 9 years later. Jeanne recommends only those nutritional interventions that are supported by research, and it seems everyone we heard from who is doing well is following her program. You can check out her website which contains links to some of the articles and papers she has written: http://www.nutritional-solutions.net/
We also heard from a woman here in Oregon who is being treated by Dr. Berger, the neurosurgeon we consulted at UCSF in San Francisco. She was diagnosed with GBM 6.5 years ago but was only given 6 months to live when she was first diagnosed. Both she and our local neurosurgeon (Dr. Kokkino) have said that Dr. Berger is the top neurosurgeon in the country for temporal lobe tumors. Needless to say, we were very encouraged by all of this. It seems that everyone who is outliving their initial prognosis is using multiple treatment approaches simultaneously (the very best surgery and chemo as well as nutrition, herbal formulas, supplements, meditation, exercise, etc.)
Next steps: (number 1 has changed from biopsy to surgery. 2 &3 are likely to stay the same.)
Phil has decided to have his surgery performed by Dr. Berger at UCSF. We will fly down there a few days ahead of the procedure. The biopsy will involve a half day of tests on the day before the surgery. If all goes well, then he will be released about a day or two after the surgery.
Then, we expect to see the neuron-oncologist at UCSF during the same visit and begin treatment with Temodar, the treatment of choice for Phil’s type of brain tumor. Berger says he is “an ideal candidate” for it. Temodar is taken in capsules, so it can be taken at home. It is given for 5 consecutive nights, followed by 23 nights without it. This monthly cycle goes on for a year or more. It is supposed to be well-tolerated – no hair loss, for example. There are some possible side effects including nausea, some fatigue, and headache, among others, but we’ve read that regular exercise really helps with all of these, and that many people don’t even miss work. So we are optimistic.
Phil will be working with the nutritionist, Jeanne Wallace.
Many people have asked me how I am doing. I’m putting together a support system including the btcaregivers online support group, a therapist I’m seeing weekly now to provide me with a place to dump all of this and work through it, and I’m eating well. I am learning that to really be a solid caregiver, I have to do many of the same things Phil does to take care of his physical, emotional, mental, and spiritual wellbeing. Some are easier to fit in than others. Fortunately, we are both eating so much healthier – lots of veggies and fruits, few to no sweets, etc. Cooking for him means I get the same good stuff. And we are sleeping pretty well. We continue learning how to navigate all of this together. We still talk, laugh, worry, work, and play together. We have good days and some difficult days.
Some days, it is hard to remember how we felt before this happened. I remember that I used to always worry something like this might happen. Now that it is here, it’s strange. I can’t quite explain it, but it is a little bit funny to have worried so. Once my worries came true, I found I had no more answers to my “what if..” questions than I had before. Think about it. What if you learned that your loved one had a terminal illness? Could you then be certain who would go first? Not really. Could you be certain what would finally end your loved one’s life? Not really. It could still be anything. And the life expectancies for people with brain tumors? People are outliving them every day. So we still don’t know anything except that we have this work to do and a life of love to live together. (Phil added that last part. J)
Stay hopeful for us. If nothing else, it makes us, you, and everyone else feel better while we travel this road together. We will keep you posted. Please keep praying for us in whatever way is meaningful to you. We are so grateful for every good thought, prayer, and hope you send our way.

Love, Phil and Elizabeth

Update: 1/12/07

Hello Friends and Family:

Phil and I have returned from two days in San Francisco where we met with Dr. Mitchel Berger, the Director of the Brain Tumor Research Center at UCSF.
(http://neurosurgery.medschool.ucsf.edu/faculty_staff/department_faculty/berger.html)
We had been dreading the appointment for fear that we would feel overwhelmed and down again after the visit. It has generally taken us a couple of days to regroup after a doctor’s appointment, so we were prepared to just go to the appointment and then hunker down and deal with it afterward. Our meeting with Dr. Berger went very well, and we felt pretty good after talking with him. He was relaxed and very informative, and he put us at ease.

He generally confirmed Dr. Kokkino’s initial diagnosis of low-grade brain tumor, and he agreed with the recommendation to have a biopsy to be certain. The biopsy will tell us what kind of cell is involved and that has something to do with how fast or slow the tumor is growing or may grow. We asked about the risks of biopsy, and he gave exactly the same percentages that Dr. Kokkino had given us. We remarked about that, and Dr. Berger said, “well, I wrote the book on that.” We smiled, and he said, “I mean, I really did write the definitive text on that.” That was encouraging. He told us the Brain Tumor Research Center has 18 neurosurgeons and scientists whose work is focused exclusively on brain tumors and their treatments. We found this very encouraging, too. He also outlined the kind of treatment he would recommend for Phil. He said that brain tumors like his are treated with a “very well-tolerated” chemotherapy, and that it is much milder than the kind of chemo used to treat cancers in other parts of the body.

At the end of the consultation with him, he told us, “You have every reason to remain positive. You should be living your life and staying positive.” (Now, I think if someone had said that to us in the first month post seizure, we would have said, “remain posi... huh?” But these days, that makes more sense to both of us. In fact, it felt a bit like a new lease on life.)

Despite this consultation going well, we were tired afterward. We returned to the timeshare/hotel and took a long nap. We went out in the late afternoon and evening and we rode a cable car down to Fisherman’s Wharf and back. The conductor(?) instructed us to stand on the running board for the ride, and while the idea was a bit scary to both of us, we were too embarrassed to admit it, so up and off we went, apprehensive, hanging on tight, gradually taking in more and more of the experience and finding, unexpectedly, beauty and excitement on the ride. It was a turning point for both of us. I suppose that there are two ways to shrink a tumor. You can shrink it physically, or you can live your life so large around it that it grows smaller by comparison. We have been learning the latter in the past few weeks.

Next steps: We will be meeting with Dr. Kokkino in a couple of weeks to discuss and plan for the biopsy. The plan is to have Dr. Kokkino perform the biopsy so that Phil can recuperate at home.

We continue to read Dr. Bernie Siegel’s books about people whose lives have been healed by their illness (interesting concept) and we are experiencing some of that in our own lives. So, life is good.

We will send our next update after we meet with Dr. Kokkino in a couple of weeks.
As always, we have appreciated your thoughts and prayers for us. We know they are having a very positive influence on us and our situation.

Love,
Phil and Elizabeth

Update: 12/23/06

Greetings Everyone:

It has been a while since our last update as we have been in a waiting mode to hear from the neurosurgeon. During that wait, we were able to enjoy some time getting back to “normal” a bit. We even found some humor in our situation at times, believe it or not. So we have actually enjoyed this time of not hearing any news or having to make any decisions. It’s been nice to have the time to acclimate before having to move on. He called on Wednesday and gave Phil an update about the results of the MR-Spectroscopy scan.

Dr. Kokkino has presented Phil’s case at two conferences, the latest in Cincinnati, and he called Phil from there with the consensus that he and his colleagues had reached through long discussion of his case. They agreed that the imaging provided a lot of good data about the location of the tumor, the areas of the brain that are affected and the resulting impairments that might be expected if they were to do surgery. They also agreed that imaging studies are not conclusive in determining the grade of the tumor, so they are recommending a biopsy at this point. A biopsy should tell them what kind of cells they are dealing with, how fast the tumor is growing, and whether or not to treat start treatment sooner rather than later. If the tumor is a low-grade tumor, then they may decide to wait a while on treatment. If it turns out to be a more intermediate-grade tumor, then they would begin treatment sooner with radiation and/or chemo.

He was very reassuring about the biopsy. He and his colleagues discussed, at length, the benefit/risk issues and how best to minimize those risks. The area of the brain that would both produce a good sample and present only a very small risk of impairing his speech and would be the most anterior portion of the left temporal lobe. We are encouraged by that.

He also encouraged us to get a second opinion, and we have scheduled that with a top-notch neurosurgeon/brain tumor researcher at UCSF, Dr. Mitchel S. Berger.

As we are learning, everytime we have news from the doctor and have decisions to make about that, it takes us a day or two to equilibrate and be able to have a more forward-moving approach. Phil pulls in to himself (who wouldn’t?) and I cry easily (most helpful, I’m sure). Then we talk about what we’ve been thinking and worried about, and then we both feel our feet slowly coming back to ground and we are then able to move forward. It seems that talking with each other about the things we fear the most helps us tremendously, in small doses. We feel more prepared, then, to face those situations. Erin and Elena stay in close contact with us. Erin calls Phil almost everyday from Portland, and Elena lives in Eugene now, so we are able to see her more often than last year. It is good to have them close. We’ll be spending Christmas Day together and are looking forward to that.

At this point, we have decided to just focus on being in the present and enjoying Christmas and New Year’s, being with family, and letting this other stuff take a back seat for a while. Tonight, we are sitting in front of a nice fire and watching DVD’s of the first season of Alias. J

Thanks, again, for all of your wonderful replies and support. It means so much to us to know that all of you are following this with us and caring so much for us.

Love,
Elizabeth and Phil

Update: 12/4/06

Greetings All:

Phil saw his neurologist, Dr. Jensen, Friday morning for a follow-up to monitor his anticonvulsant medication. We are always glad to meet with her because she's bright and personable, a nice combination in a physician. She takes time to answer our questions and lets us know what we might expect and also about her communications with the Dr. Kokkino, the neurosurgeon.She informed us today that Dr. Kokkino presented Phil’s case to a group of neurologists and neurosurgeons about a week ago. Dr. Jensen will be contacting him today to find out if any new information came from that presentation and discussion. Additionally, she cleared Phil to drive since his medications have completely controlled his seizures since he started them a couple of weeks ago. Needless to say, he's delighted. Now, I've returned to back-seat driving. We are two of a kind. ;-)

Phil got a call from Dr. Kokkino's office today, giving him the go-ahead to schedule his MR-SPECT scan at the UO. So apparently the legal aggreements have been signed and in record time, I might add. These agreements typically take months to negotiate, so we are really impressed by the speed with which Phil's colleagues (Randy Geller and Don Gerhart, among others) have secured this agreement. He is scheduled for the MR-SPECT scan today at 3:15. While we expect this to give the neurosurgeon more information, we know that the results will not be conclusive in the way that a brain biopsy would more likely be. However, in reading about low-grade brain tumors, we learned that it is not unusual for these to take a year or more to diagnose. And at this point, "easy does it" is probably the best strategy, as biopsies can be risky and it is not typical to rush in and do one at this early stage.

So we are not fast-tracking anywhere at this point. It’s hard to wait. On the other hand, it is good, relatively speaking, to not be in an emergent situation that requires a lot of quick decisions about risky and life-threatening issues.

Phil’s anticonvulsant meds are working really well. He has returned to work this week on a limited schedule. Today, he plans to work most of the day. Other than fatigue setting in at certain times after he takes his medication, he feels strong and positive. He has been very productive lately, wanting to work, and it is clear that being back at work has been good for him. He’s gradually finding out that he can still do the things he used to do (that his brain works), and that has been encouraging.

We will send out another update when we have news from Dr. Kokkino about the results of the MR-SPECT. Thanks to all of you for your thoughts and prayers.

- Elizabeth

Elizabeth Loux, Psy.D.
University of Oregon Counseling and Testing Center
1590 E. 13th Avenue, Eugene, OR 97403-1280
Phone: 541-346-2709 Fax: (541) 346-2842
email: evloux@uoregon.edu
Web: http://counseling.uoregon.edu/

Update: 11/26/06

Hi Friends and Family:

We have had a very restful and quiet Thanksgiving weekend. We have been enjoying having fires in the fireplace, visiting with Phil’s daughters and a friend who stopped by, talking and relaxing. Phil has recovered from the spinal tap that he had last week. He had the usual spinal tap headache unless he stayed flat in bed. This lasted for a week, and the last two days he has been up and around without a headache. So that has been a relief. He tires easily, and the medications have some side effects, but he is adjusting to them. After a week in bed, he thought a little fresh air might be good, so yesterday we went for a walk through the neighborhood. And today, we went out on an errand together. (He is not cleared to drive, but he is cleared to make suggestions from the passenger seat about my driving. ;-) And he did that very well.) It is strange how exhausting a short trip to the store can be. But it felt good to get out anyway.

The results of the spinal tap showed no sign of infection, and this moves us in the direction of the tumor diagnosis. We expect to hear from Dr. Kokkino sometime later this week.

This experience has been unlike any either of us has been through. We are learning how people go through something like this. We have always talked with each other easily, and trusted each other. And those things have been so useful to us in this. We find that we spend a little time talking and planning for things and then we need to get off the subject and just watch Battlestar Gallactica DVDs, or something.

Thanks to our departments at work, we have had time together to really talk about a lot of things and to adjust to this new information. We have also been well fed, as the UO Counseling and Testing Center staff has been providing dinner for us each day. Neighbors have raked our leaves and been very helpful in other ways as well. We are very grateful for this support.

We plan to send out weekly updates for the time being. No news is good news, in this case, so not to worry. J

We hope that all of you had a peaceful Thanksgiving, and we give thanks for each of you.

Love,
Phil and Elizabeth.