Photos from Houston!

Scatter brain

Hi ya'll. how's it going? Going swell here. I've been out and about jet-setting. Recovering from all that excitement of visitng Houston last week.
It went well- I can't remember if I already shared ....I guess I could look back at past blog posts..but that seems like so much wooorrrrkkk. I've been very fatigued lately. I'm going t say it's because of the chemo and not a side effect of my Tumah.
Sometimes it's hard to even get off the floor.  I've been trying to eat well and go to the gym. Mark is good at getting me to go to the gym, mostly motivating me with the fact that we are paying for it- I don't waste money- so that really gets me there.
I'm almost off the steroids, from taking 12mg for 3 months, and down to 4 now..I'm pretty damn stoked. My obscene hunger is gone! As well as my sweet tooth. I'm pretty much scanty sober. Thee were a lot or candy stores in Houston for some reason, so..you know..I got a bunch. I've kinda been forcing myself to eat one or two daily- you..know...so not to waste it- this is easier to do than going to the gym. Also the fact that he wants me as healthy as possible. My clothing not fitting it pissing me off too.
I can't remember the last time I had a donut!
And soda!
It's kind of sad.
I had some waffles this morning smothered with syrup and powdered sugar- my fave since I was a weeee-babe. And it tasted like SHIT. Depressing. Waste of calories too.
The only thing I crave now is rice crispies, bananas, yogurt, and cheese. But...I can woof down anything at anytime so I make sure to eat. Like enchiladas.....oh mannnnn. Love me some...I think mark will make some tonight.  In Houston I had some Tex Mex. enchiladas safe right?  They were Mark's wet dream, he wasn't there, but..they were filed with nacho cheese and covered with chili. With an egg on top.( Mark is DOWN for the liquid cheese) They were good, for about 9 minutes. Then..disturbing. The margarita was strong. And the guacamole was probably the best I've had...and great chips. Chips and guac seemed to be consistently amazing in Houston.
I could probably do this whole post on just eating in Houston.
To skip ahead- I will come back later, my mom and I tried to grab breakfast at MD Anderson's cafeteria. We stop at the cafe for coffee...and a muffin. Guys..this muffin is unedable, it's slimy ....and...has no taste. It makes my mom gag. She says she's going Vegan for the rest of the trip. My mom is old school...she has many food phobias..including vegan, and egg whites..so this was pretty funny. I'm pretty sure she was very hungry the entire trip. She just says the silliest things these days sometimes. The best comments, I'm not allowed to repeat. More on Houston food later. I enjoyed it! Besides the nacho cheese enchiladas.
First of all, I would like to tell you...as a child....I claimed to always not feel well- I'm sure I was lying  about 80% of the time. To Get out of school...watch my three favorite movies, and eat hot pockets all day. My favorite movies growing up...men in black, little women, and Independence Day, will smith, "welcome to earth" punches the alien in the head. So good. Anyways... At a young age I also complained of ...probably having a brain tumor. So weird. I was very healthy growing up. Superior in fact, magical, special. Perfect. Hehehe. A dream! A little devil! I didn't even party in high school! Because I was so cool, uncool. I don't brag much, but I really think highly of myself, maybe too much.
So I had this boyfriend in college. He thought it would be funny / a good gift, to get me a book called, " living with a brain tumor." This is before I got sick. He also gave me a spatula. So I could cook my eggs. All he ate was pizza. We had the same favorite..pepperoni and olives. We also both put embarrassing amounts of sugar in our coffee. I thought this was a sign- true love. We got fat together.
It didn't work out obviously- but I think we both learned a lot from one another. I am very proud of him these days- he worked hard, and accomplished his dream of working as a tattoo artist for his ...I guess idol. He has an amazing family- I miss his dad...he would make his own sausage..and amazing deer jerky, among other things. He's Italian. I gave said ex one of my very large paintings back then, that I made at San Jose State during my last year for my BFA degree- completed during my diagnosis and first surgery. He hung it it his parents hallway. I would not be surprised if it's still there. want it back, my mom wants it back. I tried once, about three years ago, but he claimed it was a gift. I'm sure his parents would give it to me...last time I tried...I said I wasn't doing too well....health wise...and my mom wanted my painting and things back. This caused hysterics and said ex calling me. Not fun. That was fucked up of me.because it was a lie. Should I still try to get it back? It's safe there. It's 6x6 feet, and in the Bay Area. I'm in so cal. Prettttyyyyyy tough acquisition .why the heck would he want to keep it? If I were him I would have set it on fire. I miss my bike I rode in San Jose, he got it for me, he sold it after keeping it for a while, his friend says. That bike..we became one- that bike knew me..we traveled on bus, train, and...that's it. It was a vintage yellow puegot . Spelling?  The handle grips were white with little paw prints. It was a mixtie, the shifters weren't on the handles but kind of underneath on the main post of the bike...little switches. I would ride sooo fast. The wheels had little groves so when you breaked it would make a race car sound. Loved it.  God I miss riding it....so fast..trying to get to the train on time when I commuted from San Jose to San Carlos. I don't know if I will ever like a bike like that ever again.

That was random

A gift from an angel, Joe, my broth Vince, his mentor. Donated to my family air fair- to anywhere we need to be, for my health. Wow. I feared in the beginning that costs like this- would prevent me care. He's an angel. We took him up on this offer to go to SF and Houston.

My good Friend Amanda, who I met in Florence Italty, probably omg, six years ago! Offered to let my mom and I sty at her home which is basically situated at MD Anderson. She and her husband picked us up at the Airport. Her loved poured out of her. I haven't seen her since Italy, but always briefly saw each other on FB. I just don't know where to begin...about how much I fell in love with her and her husband Sean. 

So the next day we go to Anderson. I freaked out when we walked inside. Everyone looked sick, it made me sick to my stomach..how have I become one of these people? I've never claimed that me being sick is "unfair"... I do believe it's fucked up. 

Why me?

Why not me?

It's still just fucked up.

Looking in the mirror when I was young- wondering what I would look like when I was a woman.

Wondering what my children would like...how many shoes I would have in my collection. How famous of an artist I would be. I didn't think about cancer- I don't think as many people did back then?

I didn't ever think about death. 

I don't really think about what's going to happen after I die, I think it will be a lot like when they put you under before surgery. Everything at once, all the love, and smiles, ad tears of the people I love most around me. But instead I won't wake up magically- like no time has passed at all- shocked that the surgery is over. I just won't wake up- and I won't even know it- hard to be upset about something you don't even know has happened. 

One of the reasons I respect religion and faith- the fear of dying- is...perhaps...lessened?

I only fear- the sadness of my family. Every time I think of them standing around me. I freak the fuck out. This is most likely fucked the fuck up- but I hope my mom passes before I do, so she won't have to see me go. I think about this, visualize this probably every other day. It's the only thing about this damn brain tumor that upsets me. I believe, some things should upset me! It's a horrible, hard, situation that is happening. 

The surgeon I was lucky enough to have a meeting with, via Marks amazing contacts, was blunt about this...he sAid. This is not going be easy, it's going to be very difficult. I appreciated this so much. It's a fact- I'm not going to pretend it won't be, sometimes, actually a lot, I think my family is in denial about this, besides Mark and my mom. It's probably because Mark and my mom are with me all the time. I'm so blessed to have them. After a few beers the other day with Mark, in the sunshine, he really got emotional about how wonderful my mother is. This meant- so much to me. Having them work together- makes me feel so safe - I know they will never let anything bad happen to me.

My best friend, my brother Vince, had a falling out about three years ago- he visited us in Boston and it went sour very quickly. I am....very stubborn as you know, but Mark is equally as stubborn. I think it's a Romero thing- but I'm not that good at forgiving people...especially...when....I guess it's my brother. He's the only one I vowed never to forgive because of this incident. Mark was like this at first with my brother, but he changed his mind and said once my brother sincerely sat down with him and apologized to him he would like to begin a friendship with him. I was like...fuck that...he's dead to me. I'm not sure for how long I refused to speak to him. It made my mom very sad.

I just....would not budge. He tried apologizing to me- I doubted him.

Last thanksgiving, as we were walking our dogs together, I told him WTF. He said he was scared of me. Scared to talk to me, that I would flip out and try to kill him. Most likely true..I would have loved that. And that moment I decided to try to forgive him. I'm not when the pain of that Boston will fade completely. It will. I try to remind myself of the timing- the situation he was in during that period of his life, and mine as well. I guess ...I think talking about it in depth about would help. So we talk in general more these days. He moved up to Folsom recently with his new wifey. I've seen him a lot for him being so far away. He's been very successful these last couple years.i haven't figured it out yet..blut when I look at him in the eyes, they don't sparkle like they used to. I'm all about sparkly eyes. I kinda don't know when the last ie. I. Saw. Him. Sparkle was, with. A. Big. Genuine. Smile. On. His. Real excitement. I'm going to try to picture it now-  because I remember what it looks like.

Anyways, when Mark and I were talking about my wonderful mom

He started talking about my best friend Vince. And how beat up he was about me being sick, and how much he loved me. And how much he knew he was a great guy, and how hard he was trying to be that great guy. I think mark has found a new respect for Vince. Which means...an unbelievable amount to me. It makes my heart heal...knowing that Mark, someone I trust so much...can find forgiveness for Vince. Helps me recognize...that Vince is just who he is, and like us all, can learn from his mistakes...and heal himself. And eventually...find his twinkly eyes again.

Fuckkkkk....lots of fucks today. That was hard to write.

I have a lot of congestion right now, crying helped. I've also has a lot of back pain. Just on my lower left side. I will be fine for a couple hours, then be in so much pain a can't move without yelping. Last night I thought I had a spinal infection. I'm ok though. It's most likely because of all the extra weight I'm carrying around these days. And the lack of activity my body has been reduced to. Man, I was so fit before all this. Probably will take a year to get back to that.

So hard to get back to MD Anderson.

All the sick people made me cry, reality check. But also a reminder that this hospital is where people go to get better - because it's that great of an institution. We met with doctor Gilbert. The head of the neuro oncology department. He knew everything about me.was very kind. And seemed to be a wonderful doctor. Swell. Definitely an option. But I want someone who thinks too highly of himself and shows it. I want someone who want to play god, and heal people, speak in tongues. Hold peoples lives in their hands- and know they can help them. As much as I've been bothered with the care of UCLA regarding their methods of group care, all the oncologists working together- meaning, I don't necessarily get to see the doc same do got all the time. I believe that right now, I am in the right place. Meeting all these different doctors recently has showed me this. 

Upset after Houston. Mark gave me a pep talk, I was having a little break down. He told me to focus on the things that I DO have control of. Like working on my art, working out, eating healthy, and so on. Everyday since I've been working on my art. He also told me, that I'm getting the best care out there, I'm getting the same care that the president would get if he were sick. Every doctor it have seen is the bestof the best. Each one, knows of the other one, and has said...they were rock stars. One has said that..well....she's a rock star...but...I am one too. He also said ..matter of factory...that his patients die- fact-- ok--brain cancer is one of the most difficult cancers to fight. My mother decided to loath him at this pont. He did act like a used car salesman. I would never go to him for treatment. He was the same one who told me it was going to be a hard journey. He also gave me great advice. That I need to pick a doctor. To pick my horse and ride it. Otherwise I would always question my decision. So true. I really respect his personality, and cocky-ness. He looked at my brain scans. He immediately said they didn't look good and that there was growth. He didn't say he was positive but he showed us...and it totally looked like MASSIVE amount of growth...even sections that looked like it was spreading to the other hemisphere of my brain.it was...intense..but...more so...

What the fuck.

This is the same scan UCLA looked at and said everything looked good.

How could both have such different opinions. This..I didn't get too upset.

We were very lucky to meet with this man- and it gave me a whole new perspective on my care. A good one.

Amazingly we were also able to have a meeting with the president of research at Methodist hospital in Houston, among other things, he is also a rockstar. He is also tall, dark, blued eyed, handsome, and Italian. Mark hooked us up with him. He sent his assistant over to Anderson to pick us up in a car, he took our bags, and escorted us the entire time. I felt way fancy. He also texted me later with recommendations on a good cool candy stores - he was also a candy man! I hooked him up with some from my stash that I never leave home without. He took us to, Marrow, the Italian mans, office. Which was VIP, made me feel important, not a bad way to feel these days. We got to raid their food goods, my mom loved their industrial Kurig and dozen of coffee choices. I took extra beverages of course. We chilled and waited for Marrow to be done with a meeting, he is a very important man! He the. Took us to the hotel bar next door and sat down with us like he was not a magic man, but a good friend. He said, without this white coat, he is just a man, here to help us. And he would help us, in anyway possible. He told us mark was a wonderful man and that's why he was so pleased to meet us. He assured us that the surgeon we has met with was just being protective of us, with the information with the scan, and just acting cautious, that made us feel better. He told us to call us anytime,and that he would be here for us, as a a friend. Jesus, what a man!! So after a little flirting, so handsome. We got ready to go meet my Boston friends, new locals to Houston. 

But first a little gossips about Marrow. He told us about his family, two sets of twins, and an older son.

Later on, Mark told us that the dude lived next door to flipping Bush senior! The Italian had told us that he married his grade school sweetheart.

Mark gave us the gossip...he met his first wife ...like many people do, and had children. His wife then died of breast cancer. After that was when he decided to become this amazing researcher, I think he manly focuses on breast cancer, he told us that the success rate of surviving breast cancer is 95%. Thank god.anyways...she died. Then one day, while in New York, who does he run into, but his grade school sweetheart growing up in Italy. What are the odds???? They fall in love, and have children. Can you believe that?

Another cool thing...he had a rosary, that was blessed by the pope, he gave this to mark, and Mark gave it to me. I keep it with my always.

So.....

Houston. We only ended up have appointments one day so that gave us plenty of time to explore. We went to Rice Village, a little downtown area. There were a weird about of French stores, and baby stores! As well as candy stores. My favorite was a bath/ lotion store with all European products. I flipping love me a good bath- oh man...aromatherapy...I have REALLY soft skin. The key is to moisturize every single time after you get out of the shower. It's swell also to do it when you are still a little moist. Air drying is good too- but who has time for that. I realllly loved this store. I wanted everything..I was flipping out. Do you know how hard it is to find bubble bath??? All of them were over 20 bucks tho- and I just couldn't justify that, so I need up getting a little ample of bath salts. Kinda wasted the a little the other night because I'm so congested I couldn't smell them!

I fell in love with Amands husband when I found out that he looooves baths too. They have a great round shaped tub. Amanda made me a couple baths, she's a product junky so they were totally amazing. Which craft was present as well, the water was perfectly steamy the entire time! I've also never been able to relax as much as I did ever before.

Had the best cinnamon roll of my life, and cross aint. Amanda, as you read this..will you think about sending me some I will pay for over night shipping. She also took us this awesome place that had these dumpling like characters. I can't remember the name, they are polish. They look like rolls. Get this..they are stuffed! With pizza! Taco stuff, cheesesteak. Sounds crazy I know...the rolls are so soft. But my favorite where the breakfast choices. Bacon cheese potato egg sausage, every different combination. Probably some of the best food I've ever had in my life. Do you think they would stay good overnights if we back them in special ice pack stuff for shipping? I saved some that was used when Rich had a cheese basket sent to me, what a angel. I think they would? There are probably a lot of preservative in them anyways ?

So we had dinner with out Boston friends, where I had that nacho cheese enchilada. Wonderful people. We visited the Rothko chapel- which I'm considering getting married at, and the natural history museum. My favorite was the Menil collection. It was so exciting to see the exhibits...I saw someone new...who I totally stoked about, Lee bontecou. And an awesome collection of Magritte and other surrealist artists. I'm a dumbass. I was very concerned about getting to the butterfly exhibit at the natural history museum, had to be there at 4, I thought it was 330. I busted ass through that show. After we were gone, I realized it was only 130!!!!!!! Imagine! I was so pissed. Maybe it will travel to the west coast soon.

I have my next blood draw on Monday, then the following Monday. I do this each chemo cycle so they can check my blood counts/immune system. I can walk to the clinic...love that. Then I get to wait until the 19th for my scan!  Hopefully blood is all good, they will tell me that before the 19th, and then I can do another round of chemo.if I can't then it's crunch time I guess. Ther are a lot of choices that we are learning about, they can do something called personalized chemo or something, a cocktail of drugs suited for your particular genetic brain tumor ingredients. Or there is a very promising clinical trial called Tokagen. It's all about qualifying. There is one other chemo we can do, Avastin, but that's complicated and don't understand really what they do with it.

The next couple weeks will be good, this is when the side effects of the chemo are less. Going to be doing some fun things! Hopefully going with my sister this weekend to her annual work party in Palm Springs. My favorite place. But this time I wouldn't look like a golden goddess in a micro bikini. I'll live. MUMU for me. The heat this time may be a little much, usually could go all day in 100degree weather. But it would also be fun to hang out in the comfy beds and order room service and movies on the company tab. Maybe my sister and I can go look at wedding venues. Or window shop! 

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 

San Diego I love you, but you're bringing me down

I have my baby boy Sunny in my lap, he seems to know when I'm feeling bad, he's been cuddling with me all morning. I started by second round of chemo on ...Tuesday I think? It hasn't been that bad I guess. I've been catching up on sleep, that's a plus- and my appetite has lessened, "temporary anorexia" they call it. I'm ok with that.

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. 

Scan looks good.

Appointments started at 1,then 2, then 3. Then wait the two hour norm running behind time of the doctors. So how it works at UCLA neuro oncology clinic.

There is a team of doctors, 4 I know of, probably more. The initial doctor I go to see, who is recommended to me by my oncologist Dr. Patrick Wen from Dana Farber in Boston, is dr. Cloughsey. I see him once, next appointment I see dr. Lai...unknow to us...second and third time i see dr. Lai. Ok sounds good, this is my doctor.Third time....I see dr. lai.

We go in today, getting big news, expecting to see MY Doctor.

they say..you are here to see dr. Lai correct?

Correct.

Hello my name Is dr. Blahblahblah

who the hell are you?

We have to fill her in on the last 4 months, recall specific dates because their files are incompete.

Whatever.

Can I just see the same doctor every time? At least tell me that he won't be here? This doctor, she sounded so offended that I would be upset that dr. lai wasn't there.

Ends up dr. Lai is in San Diego right now at a big cancer research convention downtown, cool! Maybe I can go stalk him down there.

I would have rather had good news from him.

It's funny that they have the helper chick/ resident/Dr.Yoon come in first, do all the little neuro tests, touch your nose, follow my finger, walk in a straight line- I twirl at the end. Remember these three words.

Baseball, green, happiness. Easy! Baseball on green field happy yyyyyayyyy.

Who is the Vice President?I always miss this question- Mark gives me so much shit. I got it right last time, I don't think it's neurological- I just don't care.

Then the worst question ever, it's always the same too...subtract 7 from 100, and so on. My brain finds this particularly difficult. It is extremely frustrating, doesn't help that we all are laughing, but they help me figure it out. 

It is really embarrassing.

 I'm ripping my eye balls out just trying to count backwards on my fingers.

 Let's call this a neurological problem.

Anyways so she comes in and does this..without telling us the results first! Leaves us hanging... Finally they point you to the back room with the MRI screens...to the doctor we have never met before. Scan looks good. Good.

I feel numb. 

Totally not happy, or relieved, or sad.

(I've never said this out loud) but sometimes I wish it would just grow already so I don't have to deal with everything while I wait for it to grow.

Glioblastomas, always grow. It's just how long it takes to fuck you over.

So we are happy my tumor has not grown. So this means the CCNU chemo has worked- or my tumor has just decided to chill for a while- my donuts are helping I think.

I go back in another 6 weeks to do this again.

I have no patience. 

I have no patience.

I have no patience watching my loved ones freak out, or for stupid people, or for cancer.

I am good at turning off  freak out I have cancer. I'm doing fantastic!

And I'm good with confrontation.

Anyways...I feel totally numb. 

Last night I wrote, 

I feel like everyone is my enemy.

Followed by many angry mean hurtful words. I decided to not post this, yet. 

I don't really feel this way, I'm happy by tumor hasn't grown.

It just stresses me out more. Instead of being super aggressive with it now and going to the ends of the earth to save my life...it's recommended I wait, I can't get into any clinical trials until it "grows back" anyways.

There's a bunch of things I can do in conjunction with my chemo, but all my doctors are so wishy-washy because they haven't been clinically studied, or have only been done so in Europe. They admit these things won't hurt trying, but they are just so....err whatever...about anything u say or ask about it.." Well some of our patients are doing it"......silence.

I'm totally down.

But It freaks my mom out to no end, she's old school. If the doctor doesn't say DO IT she's going to trip balls. We are meeting with a doctor, Dr. Cobb who does these therapies with his patients.We are lucky enough to meet with him on Wednesday as he is in SD for the same cancer research convention. We are having tacos. Mark has hooked us up with him. This makes my mom nervous.

She thinks I will do whatever Mark thinks I should do.

Sometimes it hurts my feelings..

I do what I want when I want. I'm Spolied remember?

My mom and I were just upset- by the time we got home tonight- both of us were just...DONE.

On our drive home from LA we realize I don't have the Zofran I need to take with my chemo dose tonight. We have to page the doctor, it gets sent to the wrong pharmacy, pharmacy says it's already been filled and it will cost $400 out of pocket. 

We didn't know they filled the Zofran at the same time as the chemo at UCLA...after freaking out, I check the bag. There it is.

Stressed the tuck out- we are Done.

Chocolate and a bath and some Jo Malone curiosity of my mothers stash.

I had the pleasure of meeting my friend Sara for dinner before we got on the road, always chill before we drive home, avoid rush hour.

Oh...and when we get into the doctors so late in the afternoon, the doctors are DONE. You can just tell, the entire staff is ready to go, and leave! Everyone is dead tired. They don't speak to you, they respond. If you don't say anything they won't either.

The pharmacy was closing, so if we didn't get my chemo script over we would have to go back tomorrow and pick it up, 1+ hour drive.

Dr.Yoon was an angel and ran it over. As Mark went to go pick it up...the pharmacist says...are you kidding me?! We close in 15 minutes...

How the ******** is that my problem!!

Mark is the best. We are badasseS. My momma too.

Going to take the pill now. I take two pills ....and that's good for 6 weeks. I get the usual side ffects associated with chemo that we think of. But it only lasts about a week.

I'm going down on the steroids! In 3 weeks hopefully they will be all done. 

Sunny came today, he was such a good boy.

At least I'm happy that today is over. I'm sure I will be relieved and happy about the outcome tomorrow.

I'm starting to feel a bit angry now.

Has anyone else felt like this when getting important news? Numb/ unhappy about getting good news. Maybe I'm not using the correct wording to describe how I feel. Frustrated? 

Wednesday night I will be back in San Diego. On Monday mom and I go to SF to speak with the research team.

I just want this to be over.

Let's just do the chemo, and get good results every 6 weeks. That's that.

On Sunday, mom and I go to Houston for I think 4 days. I'm excited about this. I get to see my angel Amanda and we are going to see a bunch of cool stuff! Rothko's cathedral, and this butterfly exhibit, they land on you!

I hope they attack me!

MD Anderson sounds like a resort!

I'm excited, it's going to be a little vacation. 

I just want to get back to normal, whatever normal is.

I want to plan my wedding.

Goodnight guys. Feel free to ask questions. It's relieving for me to talk about it.

My tumah buddy

This is my brain tumor buddy. We grew up around the corner from each other. She moved when we were jr highish age and I don't really remember seeing her ever again. But her mom worked with my mom as a teacher at the high school I attended, so I always heard stories about her when she was bad! Now we have reconnected- over our tumors- not the best way- but I'm very happy!

Her tumor is the same as mine when I was first diagnosed. But hers was in her frontal lobe. How fucked up is that- in the same neighborhood! She had surgery a few months ago  and is now doing chemo which has so far been a success! I'm so happy to have someone to talk to, be blunt with, and hate cancer with. She lives near my momma so whenever I'm up in the OC we try to get together-here we are at my favorite breakfast place in Yorba Linda called The Original Pancake House. I would be going there tomorrow but  I'm going for a haircut- always cheers me up! Still waiting to see the doctor, he's an hour late but that's nothing new. See you soon folks.

I'm not a morning person

Trying to edit this photo in because.ugh. Blogger sucks. This is Mark and I at my brothers wedding. I look old- everyone thought I was the older sister, good for you Allison. The other is when Mark and were falling in love. This photo was taken while I was doing radiation. My hair fell out, I never felt sexier with that hair. I'm not longer a candidate for radiation, your brain can only handle so much. The chemo for brains doesn't make your hair fall out- so won't have to worry about that again. It will be fun to donate that wig some day, and I will totally discriminate while choosing who. Boom. Fixed this blog post. No more paranoia. Now begins.....

Today was boring, 1 am sucks
Bird howls, I wake up like a raving lunatic. I'm getting on an 8 am train to Orange County to see my mom then go to my UCLA MRI appointment on Monday.
I forgot to charge my phone, my charger is not where it should be. I know Mark fucking took it, and I let this be known. He hasn't been sleeping well, he wakes up every morning at 5/6 am to get on calls, working, working so damn hard, but it's never enough these days.
I tell him I'm on such an early train to get away from him, because he's an asshole. Not true. he's obviously mad at me for running around yelling at him in the middle of the night.
He tells me he's glad I'm leaving. I deserve that. We know we don't mean it. I sleep on the sofa sometimes, the bed is full of beasts, and my neck and back hurt, and I'm suffering from insomnia.
If you look at Gliblastoma side effects, side effects of brain rumors. There isn't really anything specific but insomnia and headaches etc . It mostly depends on where your tumor is and how much it has destroyed your brain, how much it's eaten up your little pizza pie. Or how much your surgeon has used the melon scoop on your lovely fuckin brain. I have a great surgeon and she did a perfect job.
My tumor is in my right temporal lobe. Before surgery it had grown to where it was pushing on my optic nerve. It was causing what I call 'light shows'. Since I have the best surgeon in the world so she was able to get that to stop. It was like there would be a dark spot in my field of vision. Or I would see blinking colors of lights for a minute or so.
I feel bad for Mark. I feel bad for him for loving me so much.
I've told multiple boyfriends not to fall in love with me. They laugh. But they always do. One of the first things I told Mark- sucker.
Sometimes I wish he would just leave me. This pisses him off -a lot. I'm actually the asshole most of the time.
I don't want to put him in pain, I don't like hearing he had a bad day, I can't help but feel responsible. I can't help but feel responsible when I see my mom cry. I don't think I've seen any other family member cry in front of me  because of this. I'm sure they do. I think my dad cried on the phone when I told him. I've seen him cry in the movies, he won't admit that I'm sure.
Omg I can hear the clubs outside still- we live two doors down from house of blues. Seriously..is there not some sort of law about being loud and annoying, and dying, stop dying and making everyone sad.
I'm just joking, I'm not done torturing everyone yet.
I think my chemo is working. Which is GREAT. I get to wait another 6 weeks for another MRI to tell me whether or not the chemo is working and the tumor is growing. I could probably go back to work. If I didn't get so fatigued that would make it easier, my arms get tired when I'm window shopping looking through racks of clothes. What a nightmare- I'm being serious about that one.
It wouldn't be so bad working from home on my art in my non existent studio in a 700ftsq apartment. I may go on disability- depending.
I want out of this lease so bad you have no idea.
I live downtown, I love downtown. I always say I always want to live some place that I can walk to everything I need.
All I want is a garden now. And a bedroom door, I've lived in studios for so long. Just a garden, that's all I need.
This place is so expensive. It wouldn't have been such a big deal if I hadn't have most likely caused mark losing the best and most exciting dream job opportunity of a life time.
He's working for a really cool Polish tech company. He's polish- anything polish he loves. He was so excited, I was so excited. My mom was so not excited. They wanted him to work in Poland. We were set to go.
Then my tumor grew. We tried to think of ways to still go. He wanted to go so bad. I did too. Just for a year we said. I can't leave my family. Period. I can't take a chance with healthcare.
His dream, gone.
We can tell ourselves- we can go later! When I'm better. Yeah.
He still works for them, but not in the same way.
This loft is too expensive. I want out so bad.
I want a house, with a little yard for Sunny. But then... We are going to need a car to get to all the places we will no longer be able to walk to. Then there's the car insurance issue.
Then there's me being a bitch and ruining everyone's life. I'm allowed to feel like this sometimes btw.
I'm sad right now. My neck hurts. I will catch up on sleep tomorrow.
I always sleep well when I'm with my mom. She knows how to rub my back and tickle my head. Just being near here calms everything down. I know nothing bad will happen when I'm with her. 100%
Mark wakes up and asks me if I'm crying. I am, but silently. I have that single tear rolling down by cheek like Denzel in Glory. Sorry to compare myself to a slave.
I'm a slave for you. Have you ever gotten obsessed with watching Britney Spears videos, with lyrics, singing along, maybe dancing. I did. ONCE. Only for a couple hours.
I don't know how he knows I'm crying. I lie. He tells me to go to sleep and how much he loves me.
I'm crazy, and can't blame the craziness on taking steroids anymore ( I'm almost off them)
I guess I'm lovable enough to be forgiven, I flip out a lot tho. Remember I told you they call me the flipper?
Glioblastomas cause side effects by growing, or putting pressure on nearby healthy brain tissue.
Some symptoms. Cognitive , personality changes, memory loss, speech difficulty, confusion and headache. Muscle weakness, visual changes.
Maybe the insomnia is still from the steroids.
Symptoms, increased appetite, especially for sweets. Weight gain, fat deposits in the cheeks (wonderful), insomnia with excessive feelings of well being  And euphoria. I wouldn't exactly call it euphoria. It kind of feels like your brain is dead tired but that your body is buzzing with energy. For me it makes me feel so bored- but unable to do anything about it. Can't take a nap, concentrate.
But now that I'm almost off them this is getting a little better
They give you steroids to help reduce swelling in the brain. Now that my headaches are mostly gone I'm hoping I can go all the way off them.
Why do people stand in the street and just scream? Ok crazy street bum, maybe you have something to scream about. But frat boys, shut up, really.
Because reoccurance rates are so high, many clinicians take a palliative, rather than curative, approach to treating GBM. But that need not be the case, said brain tumor specialists with Indiana University Health Neuroscience. I want to go visit this hospital next. I had totally forgotten about them.
Mark and I are stressing the importance of this. I'm not here to try to improve my quality of life. I'm here to cure my tumor, we are going to get rid of it completely. Docs don't like to say things like that. Because their medical books say it's impossible.
I truely believe I can do anything I want to if I try. Probably comes from me being a spoiled brat.
I think doing research online about your medical condition is extremely important. fOR sure do not believe everything you read on the internet. But I think it's important to educate yourself, know what's happening with clinical trials, different treatment options, personal stories, even what is to maybe come.
I would like to stress researching what's going on to my family and friends. It helps me not feel so alone. Or maybe ask how I'm feeling sometime, or respond to my emails.
No I'm probably not talking about you.
Sorry, I'm allowed to be sensitive sometimes. No I don't have to be patient with you all the time, or try to understand where you are coming from.
I do try to do this 95% of the time! because I don't like seeing you sad.
Sooooooooo, I'm gonna be around for a long time, if only to flip out on you in the middle of the night.
Or make my mom giddy about me coming up a few days early just to hang out. I'm excited too.
I want to go eat a bowl of cereal, but the spoon on the bowl will surely wake my Mark up. And I'm sweet so I won't do that. And besides I just ate some yogurt. In 2 hours I will get up and have four waffles, shut up.
Seriously- best part of waking up is....eating.
Goodnight and goodmorning.
Xo
-k

Sweets, I'm so damn sweet

It has been a problem of mine. My mother blames my father, supposedly he gave me coca cola in my sippy cup. All I have to say is, thank you dad, where would I be, who would I be? I love my cola, none of that diet shit either. That stuff gives you cancer.

I've been getting a lot of candy lately.

Growing up I mostly saw my dad on the weekends. We always went to the movies. There was candy involved,  lots of candy. As my belly grew into a big girl belly we began to pre-shop for our movie candy. First it was the sour patch kids ( classic) then we had the Airheads, Woppers, licorice, all that boring stuff. Where it got reaaaaallll was the toffee. SCORE bars, Heath Bars, RIPP your teeth pit of your head bars. Toffee and I had a good couple years together.

Candy.Good thing we live right above a 7-11, I haven't had any chocolate today, my donut daily doesn't count. I love my downtown San Diego 7-11.

I thought I loved by college days 7-11 in San Jose, that was a pretty good one. The main man, I don't remember his name, but I'm sure he remembers mine, was a total crack head- he looked like Christian Bale in TheMachinist but with long stringy brown hair. My friend Chelsea remembers his name- what's his name? He found me on the bus once and started talking to me, I got off and walked home. Sometimes he would run two cash registers at once, one time...he was in love with me, he was always so happy to see me, I'm glad I made him smile.

Ugh these stories suck, Mark has some really good stories. You wouldn't believe half of them....remember in that second or third Hannibal/ cannibal movie when they feed the bodies to the pigs, in gangster movies too- this seems like a great way to dispose of a body btw. So on this family farm in Poland Mark claims to have visited. They have these types of  pigs- but they don't feed them people. They feed them POOP. Human poop. Whhhhhhhaaaatttttttt. The outhouse is situated above the pigpen, I guess they live in a ditch. He said once the pigs saw you, they would squeal and ram the walls of the outhouse, then eat your poop. Best part ever.

The farm people would eat the pigs! Isn't that so sweet!!

I think I may believe this story, I believe 83% of it. To be continued....

Every weekend we saw maybe one or two movies, in one day! We became pros at sneaking into the second one! ONE TIME, proudest movie stealing ever, we snuck into the Lion King opening day show and they were even checking tickets at the theater entrance! Yes. Sometimes we even snuck real food in! So bad, cheeseburgers! Fat burger! We so bad.

Dad started coming prepared with candy, pre-stocked. I started carrying a purse- too much candy to put in our pocket.

We would finish off our movie date with dinner of course. We would go to Islands, in-n-out (which Mark says sucks-boooo) the Whole Enchilada, Thai food if I begged hard enough. I think that's pretty much it, I was picky. And then maybe we would top it off with Target or Mervyns. 

He spoiled me rotten, inside and out. Rotten teeth rotten mind rotten personality, NOT!! actually Im perfect. Who would I be if i weren't so spoiled ( Mark would say, I have a natural sense of being a pain in the ass- in a good way- desire and drive naturally) this is because I was spoiled.

That makes no sense. What I mean to say is,

Thank you dad for spoiling me. I cherish every movie we saw together. Every little bit of candy, can u send me some more please, and thank you. I just want more candy.

I always have to go to the dentist. I've been lucky to have always have dental insurance.no matter how well I take care of them, cavities, my teeth ...are soft. My favorite dentist, Dr. FUNada told me they are soft, he was probably just trying to make me feel better. He gave me an electronic toothbrush for a college graduation gift! Funny story about how I met him. Insert here. My mom thinks he had a crush on me.

Anyways I love the 7-11 downstairs. Alex and Rosa are the managers and they are my only friends here. That may sound sad, but once u meet them you would be like whhhhhaaattttt they are so cool! Whhhhhaaattttttt! That's what we yell when we see each other. They like my gory stories and surgery scar so it gave me somewhere to go every morning once I came back down south after my surgery. They have these breakfast sandwiches that taste like deluxe mcdonalds. 

I wish mcdonalds were closer, it's maybe 6 blocks away, 3 too many blocks away for me. Mark and I don't like to leave our threeish square block hood, so if u wanna hang with us you better pick someplace close to meet, or Mark is going to be in a bad mood. Maybe I will take my walk to mcdonalds, ONLY if I go to the gym first (maybe)

So Easter is my favorite time of the candy year. WHY? Cadbury EGG time of course! And now they have the chocolate cream and Carmel and the ooeygooey used to gross but now is delicious white yellow slime eggs. BUT, these, are,nothing, compared to their classic little baby sugar covered milk chocolate eggs. The ones in the purple bag? Do u know what I'm talking about?

These are my absolute favorite. Dad would get me dozens of bags a season. Ohhhhhhhh man. They are so expensive now, 2 bags for $7, that's a little steep on on my candy budget. But I got a care package from my Dad and momma Jan a couple weeks ago, and they HOOKED me up. It was actually kind of gross, there was already a lot of candy in the house. Everything is almost gone now. So I need another box people! Get on it!

So my mom is an ANGEL, anyone who has met her, heard me speak kindly about her lol, or has seen her photo can see- an angel. So maybe my dad spoiled me rotten, but my mom Spolied me.....the eff up. She effed me up. I am down right bad.

I'm the baby gotta love me.

So we are headed to my sisters house in amanhattan Beach from one of my 3 month check ups.

So here is how it goes....every 3 months for the last five years I go in for an MRI of my brain, a blood draw, and visit with my neuro-oncologist. This usually takes all day. 

So we are at UCLA, timing is always difficult, don't want to go too early or too late because of traffic coming up and back down from my moms house in Orange County. So it ends up not being that great of an appointment, and I want some flipping cookies. Not any cookies. But these frosted, as pictured, cookies that I can only get at a particular bakery that closes in 30 minutes. It is bumper to bumper traffic....

Damn I ran out of steam writing this. 

Anyways, she got me there in time, in crazy traffic, with me flipping out about cookies- literally, remember they call me the flipper?As they were locking the doors, we got there.of course I had called them hysterically telling them I was on my way and that I was sad and that I needed cookies.

I got all cookied out on that place tho, so now we do the see's candy. Then there was delicious Mexican food and my sissy. Mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm. Going to get sees this weekend, a pound! And Mark can't have any because he says Sees sucks, then he eats them anyways, he sucks.

My mom is an amazing cook and baker. Last time we made these little chocolate nests, with the Cadbury eggs in them! You see., u see the eggs!! The nests tasted really good at 2am when I couldn't sleep. She made my birthday cake this year- which I don't have a photo of, pissed. But it was from scratch, angel food cake strawberry short cake magic. Insert birthday story here.

I think I will ask her to bake something this weekend with me. I'm going to take the train up on Friday and spend the weekend with her! I have some Nordy gift cards I've been trying to spend but the mall here blows as I've told you. It's absolutely horrendous, Im going to have to write a letter.

I'm in the market for a weekend bag for all my upcoming travels. the one I have doesn't have a shoulder strap, one of the handles is tied on, and is heavy- it's pretty though. I like to shop..a lot...but it seems like there is nothing I want these days.kinda sad. We are going to go to Nordstrom rack- I can't handle paying full price for anything, especially when everything is such poor quality, and I  get I get excited with sales...CVS ( they literally gave me $30 this week in extra bucks) Mark isn't allowed to go grocery shopping alone anymore because of his lack of sale purchases.

Whhhhewwwwww. No headache today. I slept horribly last night. I wake up, pray that it's 3 am and not 1130. Bird was less screamy last night. Every time I woke up I pet his head- I think giving him more attention is helping. He's so sensitive, he took a human size poop a couple hours ago and didn't cover it up- ugh probably because he's mad. 

I will never talk about poop ever again, it's so unladylike.

I wish I were sleepy right now. I'm bored- but don't want to do anything. Makes me binge eat-- I realized that my favorite snack of rice crispies cereal with milk is only 170 calories per serving, and the serving is big, too bad there is no nutritional value what so ever.

Whatever

Chocolate egg it is.

Later gators

-k

This is my father and I going to a 50's themed GirlScout dance, my mom made my skirt, and me with a asain candy care package package from the Louie family, Hello Panda is my favorite! 

Today, back at the GYM!

Well hello there. Today was long, it felt like I got a lot of good work done today but I can't remember exactly what I did. I remember the morning starting off rocky.....then...exhaustion. UNTIL I looked at the photo collage I made- duh I guess that is what I did.

April 1st was my due date to be back at the gym! Isn't it weird how pants that are too small sometimes seem to slide down your waist more? I would think they would stay up better? So that was kind of annoying, gym clothes will fit better soon. I don't mind much, I pretty much didn't move, let alone break a sweat for six weeks. And eat massive amounts of donuts, I don't mind much. 

I go to 24 hour fitness-I had to restart my membership and was fully prepared to have to 'deal' with the front desk and there being something totally annoying and complicated I would have to do in order to get in. Nope. Went smooth. Usually dealing with the gym is as difficult as dealing with the cable company. 

I did a good ten minute sweat on a sit down bike. I SWEAR, I got some leg muscle bulge back already.   C'mon- we all know how much I check myself out in the mirror- I would know! Mark calls bullshit.

I was going to share a story about bulging muscles and The Bar Method (my previous exercise obsession/love of my life.) but I am mad at The BAr MEthOD. They burned me, maybe some day I will gush about them again and tuck tuck hold foreeevvverrrrr. (Respect me or I quit) uggghhh i  can't help it--- The Bar Method exercise program is the best workout you will ever get in your entire life. It's a mix of ballet/Pilates and isometric moves. It will mold your body into a piece of juicy perfection. I would eat me. My sister spoiled me with a membership while we lived together in San Francisco,( and I worked at the Boston location)That was also the year I had my favorite job! I walked the city 40 hours a week putting flyers on doors. That's a really long story- one of my favorites. 

And thennnnnnn....Feeling pretty good I continued my uber not that exciting but somewhat not really entertaining  day with a visit to my place of previous employment, The New Children's Museum of San Diego! well I technically still work there, I'm on leave until May I hope I can go back- or go back sooner! Once I find out if the chemo is working I will have a better idea. Anyways.

 So going in there is going to be totally awkward. Thank goodness it's closed- totally forgot we are closed on Tuesdays. Snuck in, got what I needed, attempted to say hello to someone who I emailed who didn't respond- happy he didn't hear me call his name. And I'm out! 

I truely love the museum- let's hang out some time and I will tell you all about it. 

Here is a photo of our garden. Daily we have garden workshops for the kiddies where they build little origami pots out of newspaper and put our garden seeds in them. U can just throw the whole thing in the ground and supposedly it grows! I found the project quite challenging actually. But the kids seem to get it. So everyone who works there eats the veggies we grow!( not me veggies- I know not what to do with them) And we have chickens too so they get to eat veggies too, annnd we eat their eggs! I haven't -- I haven't been lucky enough to win the egg lottery. I asked some of the chicken coop kids whether or not we would eat the chickens eventually, to continue the circle of life. They got kinda pissed- I guess they're more pets than a food source. I asked-- but what if one gets too old to lay eggs or gets sick, duh to meI'm not sure if eating old sick chickens is a good idea. They probably think I'm so weird.

Insert- rabbit story from Polish farm via Mark, which may or may not be true.

The garden is so pretty- why don't the thousands  of downtown San diegan bums eat the vegetables? Or piss on them? Or smoke crack in them. They probably do right? I don't want your damn eggs children's museum! Please- be kind to our garden- it actually is magical.

That's body pump in the background of my kicks photo. While I stretched I occupied myself with picking out the best muscles in the group- they weren't that good- next month they will be, because I will be there! All jacked up, all RIPPED.

Whew head just started hurting, a little light headed. All this ripped muscle vegetable talk. My head muscle must be fatigued. I'm hoping working out will help me sleep.i sleep horribly these days. I have a cat named Bird, he screams every night of his life, for the last eight years. He jumps out of bed, he falls asleep in my arms every night btw, we have to pick him up, put him in front of his food, then put him back in bed when he is finished. This ritual is my/ our fault completely. It's too late for us now. 

We give Sunny melatonin for his skin condition. Maybe I will start drugging Bird with it, it helps you sleep. I'm going to try taking one right now.

Damn head . I haven't had a headache in a few days. I was having them everyday since the surgery-they are mostly gone for the last week or so. Yay. Especially since I was banned from Tylenol. I guess if the Tylenol doesn't work- you should probably not take double the dose. It's not good for your kidneys. Doctor thus had to prescribe me something extra- which I hate hate taking. It doesn't do anything more than the Tylenol anyways.

My sister warned me not to go sell it on the corner. I think she actually thought I may. Silly sister. Wink.

Donuts- Dunkin- check. Terrible selection- I may have to write a letter.

I made my kale salad again today- everyday since Lindsey left I have made it- she taught me how. I should probably eat more vegetables.i promise to try.

Time to close my eyes a bit and put on an episode of SVU, I've seen them all by now, my step mom too- it's our thing. I wish they had Criminal Minds on netflix too. I wish I had cable! Then I could watch new episodes! A girl can dream- the cable company won't even answer my calls! I love those quotes they have on the beg/end of Criminal minds- insert great quote here.

Goodnight Y'all.

And thank you for all of the words of encouragement on GoFundMe regarding my post! And all your donations of love and money, and help and work you have done getting my story out there! Every penny helps! 

"My dream tonight is to get the sleep I haven't been getting" - my baby boy Mark, I feel so bad for him.

Goodnight for realz now. - k