I should really be writing about how my mom was here today and Steve and Paco went to Oakland to hang out with my cousin (and Paco with his 2nd cousin) and how inspiring it all is to be part of this family. But really, I have to just post a few photos. Sure, I am achy. But not my heart! Just my joints.
They are mostly action shots, with no flash. So apologies for the blur, but the giant grin will explain why. I went to Spanish mass tonight. Tom flirted with the abuela behind us the entire time. She held him for a few minutes, but then he got too heavy. And he kept trying to take her glasses.
Today was a tournament of champions at Cindy’s house. Other than having to avoid vegetables, it was a good time. I am so tired, I cannot type. Lemon snuggled Vivian most of the evening. Good kids are a treat to watch.
Shannon just sent me this link. Good research news in general. I think I am a good lab rat candidate, though not as good as someone whose tumor is shrinking because of the trial. As my radio-oncologist joked, they wanted me to help their bottom line of survival! It is nice to be considered someone who is raising the expectancy stats.
I could write about tongue sores and avoiding sugar. But I am too tired. I love my friends. All is good. I think we need a ping-pong table. It was way too fun in Cindy’s garage.
Have finally started on the “Christmas” cards. Thanks to Colleen mushing the photos together. List is updated, so that is my project for the weekend.
I also had my usual Friday blood draw today. Easy yes. Tommy came with me and chatted with the lab staff as always. Everyone could hear him with me in the bathroom while I was trying to pee in a cup. That makes me crack up. They said, “He is a happy baby.” This, as I pushed the stroller out of the bathroom.
Then I dragged Tommy to Target to pick up some gifts. He was happily chatting and eating baby cheese puffs. He is so friendly.
My side effects are bugging me, but mildly. I have very clogged sinuses and my nose was bleeding more without Benadryl. But with the Benadryl, my nose gets overdry and blood crust. The Avastin is causing gum bleeding, but it seems to be worse when I eat sugar and if I use Listerine, it seems to stop. I will take the pain for 30 sec rather than a mouth full of blood. My fingers are wearing out. Steve took diaper duty as much as possible to give my hands a break. I could wear rubber gloves all the time, but yuck. The diarrhea is pretty well gone on the lower dose of Tarceva. I take about 4 Immodium a day; if I eat cheese or any real dairy, I take it with the meal too. Costco has it so cheap, 400 pills for $6.00!
Mostly what I need are salads and naps during the day.
Tom finally snuggled me, for a quick second twice today. Paco is teaching him. He does it well.
Today mom and Clark watched the beeb for a couple of hours. Tommy loves them and had no issues when I left. Paco was late to school and I swore I heard the yell “Paco” when he came in. Apparently, there was some concern he was sick. No, we just had a late breakfast all of us together. I ate vegetables, then took Immodium AD. It was an omelet with fresh spinach. So worth it.
I am finally working on “Christmas” cards. 2 weeks after I intended to do so. Posts will be light until they are out. I start Temodar on Monday and that will make me even sleepier. My GBM pal Bea is on Temodar this week, and can barely keep her eyes open. I think it is harder if you have a small child to look after. Hers is 2. I find this more difficult than Tommy’s age. 2, ugh.
Another GBM chica sent me an email. She is full of life as well. She shares the rare Giant Cell and found a woman in San Luis Obispo who has made it 8 years, in her 60s! UCSF has set me up with 3 other women. Nice. It is a clique of those of us who can sport baldness attractively (only 2 of us really are, but I like how we can pull it off).
To all the moms. Are we not tired?
Steve was tired himself, but still juggled work and a touch of baby duty on Tuesday. I slept for 2.5 hours and could have slept even longer. ‘Tis all a blur. Sleep. Sleep. Sleep.
I also talked to a researcher from the University of Texas M.D. Anderson Cancer Center. They are doing extensive research on how people get Gliomas. And I think they specialize in hereditary issues. Amazing that grandpa Harvey Wheeler, who had a stage 4 astrocytoma in 1978, died in a few months. And I have already had 3 good MRIs over a longer period. The researcher was so kind, and the more I went through my family list, the more awed she was by my family. I warned her that I get happily sappy, and she could see why. I gave her my mom’s info every time I needed a date. She always has it in her head.
Today I retook my duty and I had to close the door to Steve’s office so I was not tempted to ask for anything. I napped a bit when Lemon napped.
When I was at UCD today, just to pick up a datebook (am so absent-minded, had to go old school), I met a guy from Perú selling hats. He asked where I was from, I explained Sacramento, “Mis suegros son de Argentina.” He said, “Habla muy bien.” Always a good reminder that I can do something besides complain about the side effects!
I stopped taking bendaryl last week and now my nose is acting back up. Just trying new things to deal with the bloody nose. That is the most I can complain about. Sleepiness and a bloody nose. Not too tough.
Yesterday was an Avastin Day. Thanks to mom and Clark, life was easy. They stayed Sunday night, so mom and I left with Tom about 8:45AM. Paco seemed to be getting sick, so Clark was there to watch him and also to collect Steve at the airport.
Mom and I hit the road in the pouring rain. Then we made it through the Caldecott Tunnel to get Aunt Pat and the rain stopped. What a gorgeous view. We collected Pat and got to UCSF late due to traffic and parking at UCSF. But they are always behind schedule, so I did not feel too guilty. While mom and Pat took care of Lemon, I registered. In line in front of me was a fellow GBMer, 3 years ahead of me. Andrew was done. He was so worn out, the tumor had returned 3 times. He was ready to go. I had to smother my desire to burst into tears. I have no issue with him being exhausted. He just seemed like a good soul. He said, “I used to be upbeat.” And the last two weeks it seems he has entered a low place. I cannot blame him. I have no fear of death. I just have faith that this is not my time.
I rushed back and kissed Babs and Pat. And of course, kissed Tommy too.
From there, I caught up with Dr. Clarke and Jane, the RN. All is good. Within 3 business days of my MRI, 2 radiologists, a neuro-oncologist and a neurosurgeon had looked at it. So spoiled I am.
The clinical nurses had also matched me to a woman younger than I, named Beatrice. She has a 2 year old and I think just turned 34. We clicked right away. Jane the RN looked at Dr. Clarke and acted like they had just set up a blind date and it was successful. It is not far off. We have the same attitude towards life and you know that is a good thing.
I sent mom and Pat off to get lunch so that I could nap while getting Avastin, but chatting being what it was, no nap. We headed back to Oakland, Lemon and Spike bonded, dropped off Pat and hit the road. We were lucky with traffic and made it home. Steve was happy to be with Paco. Tom looked at him curiously, for one minute. Then did the baby dive.
From Barb, Erin’s Mom
A few days ago my college friend Barbara Evans sent me this information from an article she had read. She is particularly interested in GBMs because her daughter-in-law’s brother, had surgery 7 or 8 years ago for a GBM.
“I just read an interesting article on a “quantum step” in glioblastoma research from the University of North Carolina. A surprising pattern has emerged. While brain tumors looked alike under a microscope they showed remarkable differences when examined more closely at the molecular level. Some were missing parts of chromosomes and others had extra parts. Dr. David Neil Hayes, lead author and researcher equates this find with some of the major advances in science. Some patients may opt to forego treatment if they know it is ineffective on their type of tumor. Additionally, less medicine may work on tumors that do respond, sparing patients from toxic side effects.”
I went to UCSF today with Erin, Tommy, and my sister-in-law Pat, and I met one of the doctors there whom Erin sees regularly. She is about Erin’s age. She met Erin in the lobby where Erin was chatting with another patient, and said that Erin should be the leader of a UCSF tumor support group! This doctor confirmed that Thursday’s MRI showed no regrowth of the tumor. Yeah.
Does she look tired too? She had to nap just in case I was too tired to drive. Tommy was asleep in the back.
Good official look at MRI by UCSF. But I am so tired that I am going to take a nap. Steve is home safely. Ahhh.
More later, Erin