Last night I found out a friend I had met in Boston, one of her family members just got diagnosed with a Glioblastoma. I feel....so bad...I would go as far as to say, worse for this woman than myself.
Every case is different obviously, but I see the pain they will be going through over the next few years, like I can see their future.
I have lived it.
But not.
The same with my Tumah buddy Crystal. She in the same exact place I was in 4/5 years ago. It freaks me out- she's pretty tough, so I hope it doesn't freak her out seeing me go through this...I'm sure it does. She had this asshole in her life, had, who would say terrible things...you will be dead in 5 years...median survival rate of a grade2 Astrocytoma. Can you believe that shit?
This number doesn't apply to us I don't think. We are not at some hospital that sees a couple cases like ours a year...we are at the best hospitals in the world! We are so blessed.
Median survival for a grade 4 glioblastoma is 13-18 months. That's bullshit too.
Mark promised to give me grey hair- I was concerned about this. I've been told people with black hair, like myself, usually get white hair, not grey, so I was kinda looking forward to that 'look'
I had an appointment to get my hair trimmed yesterday, but didn't feel well enough- sucked.
A friend posted this...it made me sad- but it was a good reminder, pound it in a little harder.
" the most painful state of being is remembering the future, particularly the one you'll never have." - Soren kierkekgarrde
She says.... we don't know what is in store for us in the future, and the past is no place for us to dwell, to avoid the most painful state of being, just be here now. Be greatful what is in the present moment.
I couldn't agree more.
Sleep and donuts.
I think I'm going to start posting more photos.
Going to ucsf/usf soon.can't remember which one, kinda don't want to go. I get to see Lindsey and her family- only good part about it. I'm just so tired. Then a few days after that- ugh, more travel- but totally looking forward to HOUSTON, May even get together with an amazing couple I met in Boston.
CCNU chemo- headache, fatigue,naesua. The next chemo is Avastin-- but I heard it's not really a go getter- more of a symptom keep in check. Let's hope thus current chemo works/tumor doesn't decide to grow. Clinical trials seem terrible..so many limitations- figuring out which is the best, choosing which way to go..scared of making the wrong choice...wrong choice to save my life.
Yesterday we were blessed enough to meet with an amazing neurosurgeon/oncologist who is working on some really great stuff. Not really allowed to talk about it! But defiantly considering it later on in the game. A big cancer research convention is going on in San Diego.
I wanted to go sit outside and throw pennies at them
Why?
We were talking about all the doctors with this new friend of ours, that mark and my mom have been communicating with...and they were all the doctors that he was mentioning, and the clinical trials...that validation..was defiantly helpful.
Hard to form thoughts.
He said he thought Dr. Patrick Wen...was the best in the world ( or something along those lines) if you or anyone you know...can see him...do. ( this was my doctor in Boston at Dana Farber. Everyone in the oncology/ brain community knows him and agrees- the best)
He also agreed he is like Yoda in personality.
Dr. Wen is my Yoda.
It was cool sitting down with this new doctor eating tacos.
Spoke to one of Ceasar Milan's people in charge of his non- profit. She may be able to hook us up with a grant to go to his training ranch, it wouldn't be free for Sunny to go unfortunately. And the price is 6k-10k. So probably not going. But it's cool to even speak with her. Sunny needs help with getting socialized, I mean we need help socializing him. He doesn't get to run around with other dogs as much as he should.
Don't know where I'm going with this...no where.
So much to do today. Don't want to do it. Probably going to do it. Maybe.
Saw my sister Allison this weekend! We went shopping- tried to spend some gift cards- couldn't do it. She hates shopping, but she kept it together. Ate some good food, cuddled with my momma- I always sleep the best at home.
Slept like shit last night here in SD. Sunny may be getting kicked out of the bed. A queen size is not big enough for the four of us. Mark will not be happy.
Should have got a king.
I want my tv to break so I can get a bigger one.
Temporary anorexia.
Here are some pics from this weekend, and some others..or whatever.
Whatever mood today.
Soooooo whatever.
Stay kind.
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