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!