UCSF trip!

I'm not sure where to start. I've been..not into..anything for a week or two. My crazy energy from steroids is over, insomnia is gone, and crazy hunger is gone! Something new! I'm enjoying sleeping and being able to chill. The chemo sick is mostly gone now. I've started to get glassy eyes and dark circles under my eyes from the drug, which is ok, I'm obsessed with skin care..u know that? Let me know if you need any advice.

I'm going to go through my planner and see what I have been up to since last time I wrote- I think that was around the 7th after I got good news about my scan and chemo at UCLA. Maybe it was after I spoke to Doctor Cobb from Swedish medical center. ( need to go up there and meet him within a hospital context..not sure about him yet)

Slept a lot

Looks like on the 12th I was lonely.

And deeeennnnnnn

Last Monday my mom and I went to UCSF, the trip was stress free- I couldn't have asked for more! I wish I could have stayed longer, technically I could have, but I felt like it wasn't really the right time..having so much going on. Too much going on- with the medical/research side of things. Otherwise I'm pretty bored...wish I had some friends to see, living a few hours away seems almost as hopeless as living in Boston sometimes. My mom and I have been getting along better than ever. We are really good at pushing each other's buttons. I'm not sure if I'm just more mature, or it's some sort of old lady syndrome that I find enjoyable that has helped.Have u seen her? She's gorgeous. Her skin glows( obsessed with skin care too )and she has the most beautiful white hair- I hope to have some day. She is also an amazing artist! I think she's always wanted to be an "artist" but was expected to take a different, safe, normal route. She is a teacher, retired a few years ago. She taught ESL, ELD...all those, as well as science, and Spanish..and cooking! I went  to High School where she taught, Sonora. For my freshman and most of sophomore year I went to the high school down the street from me, El Dorado. My mom decided to remove me- because she thought I may become too cool for school,  I never was. I always got good grades in class, never in trouble...all that jazz. In kindergarten I got in trouble for picking those Hawaii looking flowers. Teach asked me to stop, so I decided to pick the flowers that were not in bloom yet- they are different! my mother was called hah. a few years later, we pull into the El Pollo Loco drive threw and my MOTHER has me get out of the car and steal the same type of flowers out of their flower beds! Can you believe that! We drove around the city looking for these, and me stealing them! She was using them in her science class, to dissect. My mom is funny- this is something I would do. She obviously copied me. So going to my moms school wasn't so bad. I was also pretty much banned from speaking to anyone from my old HS, so I had nothing to do but study. I got into AP English, straight As. My English teacher kissed me on the lips once, she always wore vampire red lipstick, now on my lips. Before my first day of new school my mom took me for a haircut and new school clothes. I had poser dreadlocks...I don't think she liked my look. Haha. She hated my eyebrows, I knew how much she loved me- never have doubted it for a second. I was a pretty crazy kid growing up- tantrums.

As you know they called me the flipper.

I cussed a lot. I have older siblings, saw every  R rated movie. I was very close with my big brother- I thought he was pretty bad ass. Never stopped me from trying to get him in trouble. I will never forget the year that we both attended the same elementary school. After school I would be in daycare, which was right next to the bike racks. They sold icecream after school. Sometimes my brother would let me have half my icecream and stick it through the fence. Imagine how happy I was, skipping a long, my brother is so cool! lol! Where did u get that?! My bad ass big brother! Now my brother was the bad one, not me.

First year at new school, I hung out with all the seniors- I was now too cool,  I knew the ropesfrom growing up with her teaching there. Best deep fried burritos, styrofoam soda cups as big as your head, flipping cheese fries, chili cheese. Goddamn cookies, 2/$1. I feel so bad for kids today.I knew all the teachers, security guards this Made things nice. They all graduated.

 Meet me at the bench at lunch, we' ll see what your're into.

tantrums...When I was wayyyy too old..I would scream and yell if I didn't get mcdonalds breakfast - I will not admit to what age I was.

Maybe my rage, oh year that's my other nick name! Rager! Came from me nursing wayyy toooo long, like years too long. Hmmmmm.

My right temporal lobe tumor, basic 

Nonverbal Communication

The right temporal lobe is important in prosody, or the rhythm of one’s speech. People with damage to the right temporal lobe often produce meaningful sentences, but they are choppy and uneven. The right temporal lobe is also important in decoding speech intonations, the changes in the tone of speech that give it different meanings in different contexts; decoding others’ facial expressions; and interpreting sequences of visual and verbal information. Thus, people with right temporal lobe damage often have difficulty picking up social cues, understanding facial expressions, following tunes and melodies, inhibiting comments that might be offensive to others and understanding aspects of nonverbal communication -- such as humor, expressed anger or sadness -- in others.

Personality

The right temporal lobe is also involved in aspects of personality. Research on individuals with severe right temporal lobe damage indicate these people are often egocentric or unable to consider the perspectives of other people. They can be long-winded and emphatic when speaking, have trouble moving from one topic to another and can stick to one topic to the point of being inappropriate. They may display aggression and paranoia and are often obsessed with strict religious or moral concerns.

Hmm,, coincidence ?

I think my mom and I are extremely alike. She always supported me in doing anything  I wanted to do, t think maybe this was because she saw so much of herself in me, and had wished her parents had supporter her in that way. I did soccer, cheerleading, ballet, tap, swimming (torture hellish boot camp) art classes, horseback riding, girl scouts, science, floral, cooking, modeling. Probably more.

She never let me quit- unless I probably raged enough...quit swimming. Thank god. Supposedly she thought I was good. I don't think they put the good people in the back of the line to, keep the pace. I remember not being able to pull myself out of the pool- so not right, I do enjoy swimming. Maybe at my next home I will not only have a garden but a pool or jacuzzi! That would be so nice. My best friend growing up, Amanda, had a pool. I remember diving for toys, playing games, Marco pollo, but mostly leaning up against the hot cement wall, soaking up the warm, leaving water shadows. 

My dog Ringo once walked straight into the jacuzzi, not knowing what it was.it was cute. I never swam in her pool with out her there, or family. I probably should have broke in, and swam whenever I wanted.  Her parents were always very nice to me. I think maybe her mom scared me a little not her dad- but now he is a hardcore Harley man- almost lost his legs on the freeway, sheet metal flew off a truck! U would think he would be scary now all leathered up, not really. I should go down and say hello. I always feel so awkward but when I do ...I never regret doing whatever I have down, or whatever.

So my mom, is a great artist. I first noticed this when she started knitting. I think she learned from her grandmother. She thinks she isn't that good, but...she's crazy. Hats scarves, sweaters. Gorgeous colors, fibers..perfectly done..she will unravel a 95% done project that has a minor mistake at the 5% done part. Boston was great, head, neck shoulders, toes, toasty. She knits several days a week with a group of nice ladies, I hear good stories ladies! Be good girls! Some of them have become close friends of mine! A woman, who shall remain nameless, saved and adopted just a yard bird, and cared for it for 5 years! Can u fuckin believe that! When I tried to save birds they would last like 3 hours! His name was birdie, I'm pretty sure she wiped his ass, .this is cute! I would do the same. I love animals, always, I sincerely belive you can judge a persons character by how they treat animals. I had a big fat white lab growing up, named Ringo. More of that later.

So my mom knits- i really want her to sell hings- she's professional quality. She loves to hunt for yarn stores all over the world ( as long as we are in the hood of course) she now makes jewelry. This woman...seriously..has taste...her creations are gorgeous. She uses found materials and collages them with other treasures- I think she could sell these too. She seems happy giving them as gifts tho. All my super cool stuff- my momma made. She has started to crochet again, I'm starting my first granny blanket tomorrow. I picked out some gorgeous yarn while in SF. She's says it's easy..hmmppphhhh, better be easier than knitting..which was easy, but not easy enough. She is also quite a talented home decorator. A little obsessed I think sometimes- her home looks like a catalogue- I can't find a towel type of thing. We all ask for her help and opinion. My buddy told me she can see that my sister and I are rher daughters because of the similarity in decorating, diff styles of course. My mother is also quite creative with her fashion choices. Linen is the name of the game. She loves to match, and can't stand a spot, will freak. She hates all the holes in my clothes - bugs me to take care of them. I do, they just get worn out because I love them so much. My mom will go for years, seriously, not using something that's brand new because she doesn't want to mess it up. I've started to wear her hand-me-downs.im kind of not embarrassed. I love me some linen, cotton...I can hardly stand synthetics.

 I told her to keep all of her old clothes in order to turn them into potatoe sacks/onesies/ clothing for my children. I thought this would be great, they could have long gorgeous curly hair, wear head to toe one color linen jumpsuits. Saw a child dressed like this at the museum. He looked like a freak. Changed my mind on this one. Poor kid. Forrest green sweat suit, with socks and crocs.Kinda cool- if I wore it, but not a ten year old.

I've finally had the chance to help my mom set up an Etsy store! She has some of her antiques up, and will be putting her creations up too. It just got started so there is hardly anything up, but she sold one piece in 24 hours! In a month or so we are going to have a wicked garage sale! She has so much cool stuff stored up. It's going to be killer. Her store is called VintageMommaFinds. 

Ok done with mom for now.

Oh yeah, we went to SF. Doctor Chang was awesome. She took her time, acted like a human being, and not someone too busy to answer random weird questions like mine. This time I came prepared with all my crazy questions I've been thinking about but don't ask. Like....radiating, and cutting out my tumor brain forever if nothing stops it from growing, I guess u turn into a vegetable if u do  that, but wouldn't u be a vegetable anyways if the tumor kept growing? Well yes. Ugh. How so? You can't swallow, speak, see, walk, breath. 

I started getting a panic attack at this point. Already wasn't feeling well, almost vomitted. I've been depressed since then. I guess I got it in my head that my last option was for them to radiate the fuck out of me, or..chop chop chop. Radiation seems to work really well, after my first sesh, it didn't grow for 3 years. There are other ways to get more radiation, they don't give it to u more than once usually because it literally fries your brain. They now have gamma knife and such..that can focus on tiny spots so not to damage healthy brain tissue. My problem is that my tumor grows in healthy brain tissue and is finger like and kind of blurry, so they wouldn't be able to pin point where to cook. I can't help but think of laying, with a respirator keeping me alive, with Mark kneeling on the ground, crying. No one else is there in this vision. I know I need to stop, I'm trying, it's fading. I feel the need to censor that last comment.

Dr. Chang also very much against alternative treatments. She's a professor. Good to keep in mind that she teaches- knowledge- that has been proven correct- or something like that. She told me nooooooo don't do that, to a few of my questions about therapies, that other doctors have neutral feelings on because they haven't had clinical tria

S. Many of which..why put money into studying a drug that has already been passed. No one makes money that way.So many different factors when it comes to these therapies.

We also spoke of the shitty- ness of how UCLA runs their scheduling.Always hours late,  u can't call and speak to a human. No choice on day or time..only morning afternoon. No information given, only if asked. Literature only if asked. General lack of energy..or care for patients and family. I'm not sure about it anymore- compared to the other hospitals I've either stayed at or visited recently. 5 hospitals treated at, 2, soon to be 4 hospitals visited recently or soon.

Although...I really need to take a break from searching. Worrying...wrote this the other day to my momma Jan. I hadn't updated anyone on how my trip to ucsf went- I just didn't have the energy to care about it, depressed, didn't want anything to do with it- made my stomach crawl...something like this

Nothing really exciting, she said my next scan is very important. Because of the length of time passed after surgery, and amount of chemo, 2 rounds. So atypically a person can do 6 rounds, but because I'm so healthy, perhaps I can do more. The object...for the chemo to kill cancer cells, by not allowing them to divide. U just rad a great pamphlet on chemo- too much work to go into all that now. So hopefully when chemo is done the caner cells just chill. What it does is hurt ur bone marrow-and immune system/ white blood cells. possibly causing a sort of lukeimia.

 I can't make any decisions about clinical trials, because I can't even apply* to them until my tumor starts growing.  All these trials open and close at non- specific-specific times. Timing, eligibility, Is what stops people from participating. Compassionate care program- dr Chang brushed off too. I came home depressed. But I liked her and the hospital.

So she told me to stop thinking about it- cause it's freaking me out unnecessarily. So after visiting Houston next week I'm taking a goddamn break. Dr. Cobb said this is well- that I shouldn't be the person doing this.

So we stayed with my best friend Lindsey's family, the Louie's in SF. They are ridiculously generous. We slept like angels. Had a Thai feast, had the best icecream in the world, played with her beasts, and snagged some awesome Chinese antiques! We were shuttled and hugged, and loved on. And I got to catch up with LInDS, not as much as I wish. Beautiful views from "our" apartment. Lol

Got my fancy yarn at the yarn store, happy my mom got to go, I love seeing her excited for materials. Such a little artist she is. So much to say about this trip, but my tummy is rumbling, back hurts, neck hurts...maybe I need a break. Mark keeps asking me if I'm going to start working again on my drawing for mike, yes, yes yes, I will do some just so mark can't say shit! I know just even getting an hour done it will totally kick me into gear. It's already and set up to go. 

Ugh, should I proof read? This one is kinda long...eh. Eh, freaked me out about censoring. 

It takes me forever to re type ....

Memory

The temporal lobes contain structures important for memory. The right temporal lobe is specialized to process nonverbal memories such as memory for pictures, visual scenes, familiar faces, routes or directions and music, but may also contribute to verbal memory, which is a primary left temporal lobe function. The temporal lobes do not store all of these memories but instead encode new information and relay it to other systems of the brain to be stored. Thus, if the right temporal lobe is seriously damaged, the person may remember many previously learned scenes, pictures and music, but she will not be able to form new memories of these.

Later gators