Oncology Appt

Erin had an oncology appt here in Sacramento with Dr. Adams today.  She had last seen him 4 weeks ago.  He is stongly in favor of following whatever kind of trial UCSF can offer Erin. For the CC-115 trial at UCSF, she needed to have a glucose fasting test of under 125. She got the results of yesterday’s test back and her glucose is ok.  However, right now there is not an opening in the trial, but they may offer something else.

All of the doctors whom Erin wrote on Monday with Shannon’s help said that her tumor is too big for gamma knife surgery.

Steve arrived at the appt shortly after it started and he faxed all of the blood results to UCSF.  He said that he had slept 13 hours last night. … a much needed rest. He and Erin went out for breakfast after the appt.

Tonight Erin used her new Mac Air.  She read messages, but was only able to write a one-line message.

Barbara

Pink Coat Story Continues

Clark took Erin for lab tests today which she needs for a possible UCSF trial.

Patricia, you might be interested in hearing that at Kaiser they ran into Joanne, the woman who 2 years ago had mistakenly taken home your new hot pink coat which Betsy had given you for Christmas.  Joanne told Clark and Erin the story.  You and I didn’t think anyone else would have such a coat and that someone must have liked the coat and snuck away with it. When Joanne got home from bridge, she discovered she already had an identical hot pink coat hanging in her closet!

One of the tests that Erin had was glucose fasting, so they stopped at McDonald’s for breakfast.  Clark says that she was more in tune to what she wanted to order and how to order it than she has been the last couple of times they were there.

They also went to Trader Joe’s today and Clark says that she was moving more quickly and more confidently than the last time they were there. She joked with the checkout person. She bought good stuff and resisted most of the tempting bad stuff.

Erin says that she is missing her family and hopes to go to Davis this weekend.

Barbara

Happy Day

This morning Steve severed himself from the company for whom he had worked for about a year.  He instantly has a lineup of interviews and stopped by around dinner time tonight.  I haven’t seen him look so happy in a couple of years.  To celebrate, Clark took Steve and Erin for sushi.  (I had bridge.)

Steve will need a laptop, so since Erin had trouble seeing a large screen, she is giving her good Mac laptop to Steve, and of course, Erin needed a replacement. She went with Shannon this  morning to buy a smaller screen Mac Air which suits her narrow field of vision better.

Last night Erin researched glioblastoma in Wikipedia.  It had a list of possible treatments.  Shannon and Erin came home and spent several hours going over the list and Erin had Shannon write to various Kaiser doctors getting their opinion. Erin says that she is not ready to give up yet.

Barbara

Back in Sacramento

Erin is back in Sacramento.  Colleen delivered Deke to the airport yesterday afternoon, then swung by Davis and picked up Erin.  Clark and I were going to Ettore’s European Bakery for dinner and Erin phoned us with her order for a take home dinner as well as pastries which she and Colleen wanted.

This morning Erin, Clark, and I checked out the new Roman missal at Mass at Newman Center.  Consubstantial… that has to be a step backword.  Afterwards, we went to Chargin’s Bar for breakfast … a hangout which both Brandon and Erin used in their 20′s.  The place was full with even a line as we left.  Erin used her left hand to eat with.

She took a half hour power nap when Clark’s son from San Rafael was here visiting this afternoon, but woke up to participate in the conversation again.  All in all, she seems quite cheerful and lucid, though she was frustrated tonight because she couldn’t read an article on GBM which she had printed from the internet.

Barbara

Nothing New

I mis-spoke, the damage to my eyes was the same old damage.

My hearing itself is fine!

Some days I am afraid. For some reason not at all. Today, my world made me stronger. Boys, family…they can make things so much stronger.

Email from Erin

Erin is in Davis and sent me this email a little while ago. I am just going to post what she wrote.  When she says that she can’t see out of one eye, I don’t know whether she means that she is missing the right field of vision which has been true for a couple of months, or whether she actually doesnt see out of one eye, which would be a new development. It is after 11 pm, so I don’t want to call there and wake someone up.

Barbara

FROM: Erin

TO: Barbara

Message flagged

Friday, November 25, 2011 10:03 PM

Message body

//

I cannot could not.
This is what I did:
My vision sucks. One eye that cannot see.  I should see all the that I can see. At heart, I should appreciate today. What I need to do I need the soul the be …ready to fight.

Thanksgiving Day

Colleen entertained us for the 3rd buffet in a week.  She seems to entertain so effortlessly.  Erin walked over by herself with Clark and I following about 20 min later with the turkey and vegetables and some other vegan food.  Michelle, the au pair and a vegan, arrived with Steve and kids.

It turns out Michelle doesn’t eat cooked veggies (which I had just tossed in oil and baked),,, just raw food: fruits, vegetables, and chia seeds for omega 3s.  I  had some dates rolled in honey and ground almonds which she politely had 1 of.

Colleen had meatballs, a scallop on pastry combination, and Shepard’s pie made with corned beef and colcannon potatoes. Erin furnished an apple-berry pie from Apple Hill.

After dinner Paco, Deke, Michelle,and I played Sorry which Steve had brought from Davis, but which Deke knew all about how to play. It was a slightly different version from what I had played as a child.  Tommy was Deke’s assistant and he lasted for about the first 45 min, then went off to play with Colleen, who can’t tolerate Sorry.

Wheeler had been with Michael, his Dad.  Michael is 6 ft 3 and Wheeler is a couple of inches taller. Once Wheeler was there, we took a family picture missing Brandon and family who were at LIsa’s family’s.  First, Deke was using Colleen’s camera and the lens was cloudy so he got a different lens and then the battery went out.  Then Deke switched to his own camera.  Michelle showed a lot of creativity and youthful dexterity taking pictures from a chair, etc.

Erin went back to Davis tonight with Steve and the boys, with Michelle driving. So, I may not have any news for a blog tomorrow.

A Happy Thanksgiving to all our blog readers.

Barbara

 

 

Trip to UCSF-Mt. Zion Campus

Today Erin, Steve, and I went to UCSF to the Mt. Zion Campus (which is a cancer center) for an interview with Dr. Pamela Munster who is charge of phase 1 trials.  Phase 1 trials study the toxicity and efficacy of a drug.  (No placebos.) The drug they are testing is called CC-115.  It is being given to subjects with Advanced Solid Tumors, Non-Hodgkin’s Lynphona or Multiple Myeloma who are no longer responding to standard treatment. It has not been given to humans before.

First another doctor, Dr. Truong, who works with Dr. Munster, asked a lot of questions on Erin’s history and was very good at keeping Erin on track.  She told Erin that she had a tumor and shouldn’t be apologizing for certain deficits. She sounded like a neurologist, but was an oncologist.

Then Dr. Munster said that right now there is not an opening,.  There are 2 patients on the trial at the SF site (The trial is at multiple sites.), so if one of them drops out, Erin would be eligible.  Otherwise, she would have to wait about 4 weeks.  Dr.Munster had just talked to Dr. Clarke, the neurologist who supervised Erin in the previous UCSF trial, and they didn’t think they wanted Erin to wait 4 weeks.  So, there is another trial involving CCNU which is an old drug, before Temodar, which Erin might be eligble for.

For the CC-115 there are a lot of blood tests required for eligiblity, and Erin will have those done on Monday here in Sacramento.

She was given a 21-page explanantion of the CC-115 trial, which I just finished reading. and it involves going to UCSF every week, some of them 9-hour days, with lots and lots of tests.  It just sounds exhausting and all-consuming.

Barbara

Trouble Writing

Erin asked me to relay to you what Dr. Lallana, the neuro-oncologist said when we saw him a couple of weeks ago.  I asked him why Erin speaks clearly much of the time, but has difficulty relaying it to paper. He said that the brain goes to the lexicon (dictionary?) to pick out words, but that the tumor is blocking what is needed to translate it to writing.

She read what she wrote in the previous Better Note blog and realized it didn’t make sense, but didn’t know how to correct it.

She was feeling blue today while we were gone to a funeral, but when she got out later this afternoon for a contact lens appt, she felt much better.  She said she needs to get out everyday.

Barbara

Better Note…

…That Barbara write her masterly. She will not understand her to be so valuable.