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.