Fighting Stage 4 Leiomyosarcoma one day at a time

Hello Everyone,

Thank You for visiting, I initially started this blog to keep family and close friends updated on our journey to Houston Texas, to visit with Dr. Burzynski, a world renowned doctor, who specializes in cancer.

A year and a half ago, MB was diagnosed with stage 4 Uterine Leiomyosarcoma and given no more than a year to live.

MB is only 50, she hasn't seen any of her kids get married or have babies. She still has a thirst for life, three kids and a Husband who absolutely adores her. My sister is 23 and youngest brother only 17. We still need our Mama Bear. If you are, or were, blessed enough to have an MB like mine, who has always loved you unconditionally and supported you, you will know how we feel. Nothing can replace a mother's love. Nothing.

Because MB's cancer is very aggressive, we had no time to waste. The very same day the doctor told us to prepare for hospice, MB and I said, "Fu*k That!", Hospice is a dirty word at our house.We started applying to the Burzynski Clinic as soon as we got home from the doctors appointmet, after 3 days of collecting medical records and sending faxes we were finally accepted.We never took time to think, we just acted. No more than a week and half after we were told to go home and prepare for death, we were on a plane headed to Houston TX in search of life and a second chance. We've left California and our family during Thanksgiving.

Even though the treatment is crazy expensive and we are away from home during the holidays, this is still the best decision we ever made. Sometimes you have to bet big to win big!

We aren't the Kardashians, we are just the Vargas' and we are going through the "realest" hardest battle of our lives...This is our story....If you'd like to start reading from the very beginning click on November, on the lower right hand side of the page and the very first post is the "Adventure Begins"

Saturday, December 31, 2011

Rockstars and Villains of 2011

We're still HERE!

* Greg Burzynski- I must say he has gone above and beyond in the treatment and care of MB. If I email him at 5pm CA time, which is 7pm TX, he calls me within the hour to offer solutions to MB's discomforts. Just yesterday, I emailed him with concerns and he wrote back twice even though he was at home. Earlier in the week, he wasn't happy with MB's Pet Scan so he changed some of her treatment meds and dosages. His actions show that he is actually trying to save MBs life. Doctors at Kaiser just want to give her pain pills. I'll let you decide who is the better doctor.

* The Burzynski Clinic-The staff at the clinic is also amazing. On December 23rd, I called and let them know MBs legs were swollen. Right away they had us get an MRI and Ultrasound, they wanted to make sure she didn't have blood clots or that any of her lymphnodes were obstructed, when MB expressed the same concerns to her doctors at Kaiser two months ago, all they ordered was the ultrasound, no MRI. The day after, on Christmas Eve, the doctor from the clinic called again to see how MB was doing, it was kind of funny because I was in the middle of our party and the doctor kept asking questions and being super thorough and I was like she's fine now I gotta go!...Thats how attentive and thorough the doctors at the Burzynski clinic are. I give the clinic and their doctors 5 stars! great job keep up the good work guys!
*Yazzy Fresh- This woman has been the best publicist to the Vargas family ever, she shared our story everywhere and it was because of her that we met the lawyers.
*Our family and friends- We have had so much emotional and financial support from our family and friends.
*Mrs. Howard and Mrs. Alexander- I highlight our neighbors because they have done and given more to our family than some of our actual family members. Mrs. Howard visits with MB every Friday without fail and I have a sneaking suspicion Mrs. Alexander had something to do with the anonymous check. It always trips me out when your neighbors do and give more than your own family. I've talked with friends about this phenomenon and they have shared that when their family needed help the first to help were the ones you'd never expect. I agree. Mrs. Howard and Mrs. Alexander are not just neighbors their family because they treat us like family!
*Taliboo- even though it didn't workout with him, he kept me sane in TX and for that I will be forever grateful.
*Irene Chavez- I know what your thinking,"OMG, isn't she the VP of Kaiser, how is she a rockstar???".Well, she has been very nice. She prays for MB and at least tries to help. At the end of the day I know her hands are tied by the powers that be. She is another Kaiser casualty. Remember, I don't hate Kaiser employees I hate the organization that ties their hands. Irene was a rockstar because when we asked for an MRI and Ultrasound she moved mountains and made sure MB had both tests done that same day. See I give credit where credit is due.
Donor's- Everyone who has or continues to donate to MB. WOW. Thank You from the bottom of our hearts, you guys make it all possible. Treatment is expensive to say the least and without you MB would have stopped her treatment a long time ago. You are saving a life!
Protester's- These people didn't just talk about it, they were about it, and stood hours in the cold for a good cause!
The Media-If it wasn't for them, MB's story wouldn't have gone national. MB says her favorite piece was the one Robert Handa did at FOX. He made sure to show the struggles with Kaiser and was accurate and thorough in his story telling. MB gives you the Emmy Robert!
Cousin Rosa- Even though sometimes we clash, and she annoys me and I'm sure I annoy her;) (she can be like the older sister I never knew I wanted), she has the biggest heart and is MBs numero uno BFF, she comes to the house regularly and gives MB body talk therapy and brings us cool information and takes us to  new therapies that we never knew existed, her smarty party butt is actualy very useful!. Love You cousin!


Kaiser Hospital Santa Teresa- Dealing with them and their politics has been a nightmare to say the very least.We've dealt with Misdiagnoses, incompetent doctors, politics, delays in care and just today they sent us a 10,000 dollar claim, that they are thinking of not paying. I know, they would.

yup, thats about it, everyone else has been really great with us!

Reflections, 2011

A bold dress to end a bold year!
As I think back on the past year, part of me can't even believe that it happened. I decree 2011 as the year of the pinches because I was constantly pinching myself. 2010 was a hard year, that was the year we saw MBs disease flourish, it was the first time, in all our lives, that we ever saw her sick. 2011 was better because we'd finally gotten used to the idea and were finding more competant doctors to treat her.

2011 was the year that I found my wings. I always knew I had a big mouth but in 2011 I learned how to use it for good not evil. It was definitely the year of action. Any idea i'd get, I went with, going to Dr. Bs, starting a blog, protesting at Kaiser, all pretty crazy ideas that worked.

My goals for 2012; continuing to watch MB get better, continue to look for a job in my field. Anyone hiring TV reporters??? I have a reel and a resume, email me! Oprah, I know you want a feisty, fearless, reporter on staff. Call me;)

One of my future goals is a million woman march to the White House demanding better healthcare.

So lets see, here's my year in review.
Met boys, dumped them all, maybe yazzy's right, maybe I am to picky...egh
MB went to Dr. Bs and finally started feeling better about her doctors.
Started the Occupy Kaiser movement with Yazzy fresh.
Reconciled with old friends
partied hard with family.
started writing full time.
made new friends.
made national headlines.
learned new things.
went to Vegas twice .
went to a million weddings.
I experienced real life miracles.
saw the best and worst of humanity
LOVED, LAUGHED, CRIED harder than I ever have in my life.....year filled with up's and downs but no regrets.

 "Prayer alone will not make a happy life. A happy life must be built. You must act." ~Dalai Lama

Lets make this a year of ACTIONS people!...lets turn off the TV, get off FB for a while and do something for the greater good of humanity. Lets show the world that our generation is more than just a
bunch of superficial , ignorant, lazy men and women. Lets show the world that we are smart, passionate innovators that will lay the foundation for a better tomorrow!

Happy New Year to all and may it bring everyone of us new blessings!!!!!

Thursday, December 29, 2011

Kaiser is on vacation....the problem is MB's cancer isn't.

Irene Chavez was supposed to call us with a resolution to the meeting Wednsday. She called, but there was no resolution, it turns out two other guys were supposed to call with the final decision today. Irene called again today and apologized for the two guys not calling, they are on vacation until Tuesday. Kaiser never fails to impress me with their awesomeness! I very politely told Irene that unfortunately, MB's cancer continues to grow and nature forgot to remind it to take a Christmas vacation. MB's doctor at Kaiser has pretty much stopped treating her with anything besides pain killers until the final word comes down from the big bosses.

Welcome to the beauracracy that is Kaiser. MB has been given the run around for about a week now, part of me wonders if they are stalling just to see if maybe they'll luck out and she'll die and then maybe they don't have to deal with her anymore. The problem with that is that if anything happens to MB they will have to deal with me, and my awesomeness, and my family and my protesters and my big mouth.

Again, I feel bad for Irene, she seems to be wanting to help and is very nice and great about keeping us updated but nothing is being done.

TRADUCCIÓN AL ESPAÑOL:Kaiser está de vacaciones .... No así, el cáncer de MB.
Irene Chávez se suponía que nos llama con una resolución de la reunión del miercoles. Llamó, pero no había una solución, resulta que otros dos chicos tenían que llamar a la decisión final de hoy. Irene volvió a llamar hoy y se disculpó por los dos chicos que no llamarón, están de vacaciones hasta el martes. Kaiser nunca deja de impresionarme con su genialidad! Yo muy amablemente le dijo a Irene que, por desgracia, el cáncer MB sigue creciendo y la naturaleza se olvidó de recordar a tomar unas vacaciones de Navidad. MB médico de Kaiser prácticamente ha dejado de tratarla casi con nada, además de analgésicos hasta la última palabra de los grandes jefes.

Bienvenido a la beauracracy que Kaiser. MB se le ha dado una vuelta alrededor de alrededor de una semana, una parte de mí se pregunta si se están frenando para ver si tal vez van a suerte y se va a morir y entonces tal vez no tienen que lidiar con ella. El problema con esto es que si algo le pasa a MB que tendrán que tratar conmigo, y mi pavor, y mi familia y mi manifestantes y la boca grande.

Una vez más, me siento mal por Irene, que parece ser que quieren ayudar y es muy bonito y bueno de mantenernos actualizados, pero nada se está haciendo.

Wednesday, December 28, 2011

Who is MB.....???

MB, her mom is on the left, her sisters to the right and below her
MB is the strongest most amazing woman I know,she's not the nicest, that title goes to Mrs.. Howard but MB is still pretty damn amazing.

MB was born in Mexico, as a kid she loved playing and fighting. Believe it or not MB was scrappy. Anytime one of her sisters would have an encounter with a playground bully MB would run home, grease her tight curls and run back ready to fight. At this point, her older sister would faint and her younger sister would cheer her on. Even as a kid, MB was the one everyone would depend on. When she was 14 she moved to the United States, worked full time and paid her rent with her other sister and older brother. She was the first to learn to drive and taught everyone else. She is the middle child of 19, 12 of which are still alive today. Her small house in Mexico was so crowded she used to do her homework in a tree. Yes MB was a tomboy.

MB and PB met in Mexico dated long distance, lost touch for 3 years and one day as if by magic they reconnected at a bus stop of all places. Three months later at the tender age of 19 MB married PB. Apparently, I was conceived on the train ride from Mexico to the US. That's probably why I like to travel so much;) Anywho, when I was a baby MB would wake up at 4am go to work and then school, come home to PB, make dinner and take care of me.  I have no idea how she did it. She sacrificed a lot so that my siblings and I could have a better future.All her sacrifice paid off, I have a BA from UCLA and my sister from Cal State Hayward. My younger brother is only 18, too soon to tell what he will do.

MB has been the best Mother. When I was a kid, she would tell me I was pretty but that there would always be someone prettier than me, she'd tell me I was smart but that there would always be someone smarter than me.Basically, she always kept it real. I always laugh when I hear Mom's tell their kids that their the best ever, I always think, "damn that kids headed for a harsh reality check when he finds out he's not the best ever!". MB was always good at telling me I could accomplish anything if I stayed positive and worked hard. She is always the first to tell me when I'm not working hard enough or when I'm being lazy. Most importantly MB has always Loved me unconditionally and had my back no matter what. I'll never forget the countless times she flew to LA to help me out or make me feel better. People say I'm spoiled and my response to that has always been, "Don't be jealous that my Mom is the bomb!". I remember, not too long ago, I did an interactive play. In the play, I was a slutty 16 year old(I know what a stretch lol).As part of the play, audience members had to volunteer to become part of the play to correct my actions. I remember my shy Mother was the only one to volunteer to correct my characters actions. It was too funny, even as a fictional character MB wanted to make sure I did the right thing. I tear up just remembering how nervous she was on stage "acting" alongside me. That's my Mom. She's always had our backs, always.

MB is classy and reserved in public but when we're alone she cusses like a sailor. This past week she told my little sister to "fu*k me up, because I was being annoying". She tells me to shut the hell up when I call her Kim Jong. My sister and I mess with her and call her a dictator because she's bossy. MB fights back, which we like, it keeps her on her toes.

My close friends know that I can tell MB anything. I told her when I lost my virginity. I tell her about the guys I date and which ones suck in bed. MB knows it all. We have no secrets between us. Tonight, I was playing music for her and I kept picking songs she loved. We are so close we communicate telepathicaly. She always knows when I'm lying but she's so cool that she plays along until i'm ready to confess, which I always do.

As a wife MB has been exemplarary. PB isn't perfect. The world sees a handsome, charming Man but MB saw an emotionally disturbed, grumpy somewhat neurotic soul. She loved him so much she helped him seek counseling for his childhood issues and loved him through his pain. She has been his rock and I said it before and I'll say it again, she's the one who keeps him sane. When MB and PB had issues which all couples do, they sought out counseling and became stronger as a couple. The key to their succesful marriage is that they Love eachother and MB has been patient. As far as I know there's never been any infidelity. They are the best married couple I know.

MB is a great friend and neighbor, she's always been fair and kind. Never gossipy or annoying. Through this entire ordeal she has been blessed because she is a good person, plain and simple. If she hadn't been such a good woman throughout her life she wouldn't be getting all this Love now. Just recently, MB got her real estate lisence. She was never fully able to be an agent because 6 months after she got her lisence she got sick. Life is funny, we always think we'll have more time until we don't.

So, who is MB? She is the strongest, smartest most awesomest friend, mother, wife, sister, daughter, sister in law anyone could ask for. MB is the classiest lady I know. True Story.

MB's fave songs:
BeeGees Saturday Night Fever

Frank Sinatra My Way

John Lennon Imagine

Los Bukis Quiereme

Monday, December 26, 2011

A Christmas Present from me to you.....

A pie I made someone buy from scratch;)

MB's disease has taught me many things but the most important thing I've learned is to not waste time. Every second of the day is a gift. Use it wisely, Love harder, give more, nuture your relationships and laugh. Our time on this earth is limited and we all have to make the most of it.

When I was younger, I spent my time and energy worrying over the stupidest things. I'd constantly beat myself up over not being skinny enough, not having a boyfriend, not having a cool job. One year I actually didn't leave the house because I was so ashamed of my non-acomplishments. What a waste.

Now, when faced with real issues, I, without knowing it, made a choice. Since MB got sick I've chosen to stay positive and look at the bright side. I never even cry anymore because crying to me is like admitting defeat. Why cry? why sit home depressed? why waste another second of my life on negativity. I choose LIFE. I choose to wear the tight red dress even though I may be a little to thick for it. Who cares, I feel good in it so like MB says, "Fuck It!". I choose to stick with the stuff that feeds my soul.

So from me to you, don't give up on yourself. Remember, we all have a gift, all we have to do is find it and nurture it. Before all of this went down I remember praying, asking God to help me find my talent so I could start using it and here I am writing, protesting. Who Knew I had it in me?

Have no fear, fear is the devil. Before I started protesting PB came up with all these crazy doomsday scenarios that could come from my protest. I ignored him and did what I felt was right and that led to a 10,000 dollar check, news coverage and hopefully soon justice for MB. Never let fear hold you back.

This experience has nurtured my writing. I've found talents I never knew I had. I've strengthened relationships with people I've known for years. I'm even considering politics. Maybe i'll be the first female president. Hey, don't put it past me, the sky's the limit and I've just discovered how to use my wings;)

Moral of the story, am I skinny? NO. Do I have a Boyfriend? NO. Am I happier than I've evr been in my life, do I live everyday in Joy? YES! HELL YES!

I encourage each and every one of you to follow your heart, don't be afraid and Love eachother as much as you possibly can! Remember at the end of the day no one will remember if you had the biggest house or the most stuff. People will remember that you showed up when they were down. They will remember your generosity and kindness, thats it!

So, If your an asshole STOP! If your a materialistic bitch put the Gucci down! If more people focused on helping others rather than spend hours at the mall shopping for themselves to make themselves feel good, this world would be a better place!

Traduccion al español:
La enfermedad de MB me ha enseñado muchas cosas, pero lo más importante que he aprendido es a no perder el tiempo. Cada segundo del día es un regalo. Úsalo con sabiduría, amar intensamente, dar más, nutrir sus relaciones y reir. Nuestro tiempo en esta tierra es limitada y todos tenemos que sacar el máximo provecho de ella.

Cuando era más joven, pasaba mi tiempo y energía preocupándose por las cosas más estúpidas. Yo siempre me había golpeado por no ser lo suficientemente delgada, no tener un novio, no tener un trabajo genial. Un año no sali de casa porque yo estaba tan avergonzado de mi. Qué desperdicio.

Ahora, cuando se enfrentan a problemas reales, que, sin saberlo, tomó una decisión. Desde MB se enfermó he optado por mantener una actitud positiva y mirar el lado positivo. Yo nunca lloro más porque el llanto para mí es como admitir la derrota. ¿Por qué llorar? ¿por qué quedarse en casa deprimido? ¿por qué perder ni un segundo de mi vida en la negatividad. Yo escojo la vida. Yo elijo usar el vestido rojo ajustado a pesar de que puede ser un poco gorda para él. A quién le importa, me siento bien en ella así que como dice MB Fuck It! Yo elijo seguir con las cosas que alimenta mi alma.

Así que de mí para ti, no te des a ti mismo. Recuerde que todos tenemos un don, todo lo que tenemos que hacer es encontrarlo y alimentarlo. Antes de todo esto cayó Recuerdo haber orado pidiendo a Dios que me ayudara a encontrar el talento para poder comenzar a usarlo y aquí estoy escribiendo, protestando. Que sabía que yo tenía en mí?

No tengas miedo, el miedo es el diablo. Antes de empezar a protestar PB vino para arriba con todos esos escenarios apocalípticos loco que pudieran derivarse de mi protesta. No le hice caso e hice lo que sentía que estaba bien y que dio lugar a una donacion de 10.000 dólares, la cobertura de noticias y esperamos la justicia lo mas antes posible de MB. Nunca dejes que el miedo te detenga.

Esta experiencia ha nutrido mi escritura. He descubierto talentos que nunca supe que había. He fortalecido las relaciones con la gente que he conocido por años. Incluso estoy considerando la política. Tal vez voy a ser la primera mujer presidente. Hey, no lo pongas por delante de mí, el cielo es el límite y he descubierto cómo usar mis alas;)

Moraleja de la historia, yo soy flaco? NO. ¿Tengo un novio? NO. Estoy más feliz que he sido por siempre en mi vida, puedo vivir cada día en la alegría? ¡SÍ! HELL YES!

Animo a todos y cada uno de ustedes para seguir a su corazón, no tengas miedo y amor entre si tanto como te sea posible! Recuerde que al final del día nadie va a recordar si tenía la casa más grande o más cosas. La gente recordará que apareció cuando estaban abajo. Se recordará su generosidad y bondad, eso es todo!

Por lo tanto, Si más gente se centrara en ayudar a los demás, en lugar de pasar horas en el centro comercial por sí mismos para sentirse bien, este mundo sería un lugar mejor!

All I want for Christmas is YOU!

We were eachothers Christmas Presents!...When you have your family you have it all!~
Christmas Eve was Amazing, family and friends came to the house with a TON of food and Love. I could not have asked for a more joy filled day. In usual Diva fashion, I over did it with the outfit, my cousin's said it was too much but that only I could pull it off. I wowed the crowd with my Boobs, I mean red dress lol.

MB felt good and sat with the family for a long time. Everyone was on their best behavior and a ton of pictures were taken. My cousin brought over his new girlfriend and I was very happy that he found someone to love.

I could tell that some people were thinking that maybe it was the LAST Christmas Eve with MB. I tell those people to have more faith and recognize that MB is a fighter and that she has many more Christmases ahead of her. MB is the original Diva and that lady has more fight in her than ALI on steroids.

Traduccion al español:
La víspera de Navidad de la familia fue increíble, y los amigos llegaron a la casa con un montón de comida y el amor. No podría haber pedido un día lleno de alegría más. Como es habitual soy la diva de la moda, mi primo dijo que era demasiado, pero que sólo yo podía llevarlo a cabo. Me asombró a la multitud con mis tetas, me refiero a jajajaja al vestido rojo.

MB se sentía bien y se sentó con la familia durante mucho tiempo. Todo el mundo estaba en su mejor comportamiento y un montón de fotos fueron tomadas. Mi primo trajo a su nueva novia y yo estaba muy contento de que se encontró con alguien a quien amar.

Me di cuenta de que algunas personas pensaban que tal vez fue la última Nochebuena con MB. Le digo a las personas que hay que tener más fe y reconocer que MB es un luchador y que tiene muchas navidades más delante de ella. MB es la Diva original y esa señora tiene más lucha en la que el ALI en los esteroides.

The meeting

Protester of the day Friday!!!!
The meeting at Kaiser went as expected, nothing was resolved and part of me feels like they just did it to say, "they had a meeting with us". Irene Chavez was nice, now lets see how effective she will be in solving our problems. It was pretty cool to have two lawyers at the meeting. They kept us on point and helped guide us through by keeping us logical and factual.

I feel bad for Irene, she's only been on the job 6 months and she already has to deal with a whopper like Maria Vargas, Welcome to Kaiser Irene;) Maybe this will encourage Irene to make some changes, perhaps longer appointment times, more qualified doctors and thorough check ups, heres hoping.The one thing that was resolved at the meeting was that the fat security gaurd thats been stalking MB will finally cease and desist. He thought he was so sneaky following her around during her appointments. At this point Kaiser is more of a threat to us than MB is to them. Whats MB going to do, she has tumors all over her body, is it really necessary for security to suddenly show up at all of her appointments. Its also a HIPPA violation for him to know when she is going in.

After the meeting my lawyers drove me home, I changed my shoes and went to the protest. My cousin showed up with his son. The little guy is only 1.6 months and won the protester of the day award! Occupy San Jose also came to the protest and they had the best chants ever! Some of my faves include: "Lets get wiser occupy Kaiser", Hey Hey Ho HO corporate care has got to go"

Traduccion al español:
La reunión en el Kaiser fue como se esperaba, nada se resolvió y parte de mí se siente como si sólo lo hizo para decir, "había que reunirse con nosotros". Irene Chávez estaba muy bien, ahora le permite ver la eficacia de ella estará en la solución de nuestros problemas. Fue muy bueno tener dos abogados en la reunión. Nos tuvieron en el punto y ayudó a guiarnos a través de mantenernos lógica y objetivamente.

Me siento mal por Irene, que sólo a estado en el trabajo de 6 meses y ya tiene que lidiar con una mentira como Maria Vargas, Bienvenido a Kaiser Irene;) Quizás esto anime a Irene a hacer algunos cambios, tal vez más horas de las citas más calificados los médicos y los planos chequeo cuidadoso. Una cosa que se resolvió en la reunión fue que el guardia gordo de seguridad no este acechando MB finalmente cese y desista. Pensó que era tan astuto siguiendo a su alrededores durante sus citas. En este punto, Kaiser es una amenaza mayor para nosotros que MB es para ellos. ¿Que es MB va a hacer, que tiene tumores en todo el cuerpo, ¿es realmente necesario para la seguridad para mostrar de repente a todas sus citas?. También es una violación de HIPPA para él saber cuando va ir.

Después de la reunión de mis abogados me llevaron a casa, me cambié de zapatos y se fue a la protesta. Mi primo se presentó con su hijo. El pequeño es sólo 1,6 meses, y ganó el manifestante de la concesión del día! Ocupan San José también llegó a la protesta y que tenía la mejor canta siempre! Algunos de mis favoritos son: "Vamos a ocupar más sabio Kaiser", Hey Hey Ho HO atención corporativa tiene que ir "

Friday, December 23, 2011

I'm Sorry....

MB and PB together last the grace of God we are all still together!!!!...A million times Thank You Universe/GOD/ALLAH for letting MB be with us once again!
I would like to apologize for having a potty mouth. Some of Kaiser's employees are very nice,MB loves all her nurses and I have had relatively decent experiences with the medical secretaries.

I'm ashamed of myself for calling MB's doctor the Bword, she is just trying to do her job. I just get so angry when I feel like MB is not being treated fairly,especially in regards to her health care. People should remember that we are dealing with life and death and at this point any little mistake can cause MB her life. I am just extremely passionate about my Mother and her care and I'm sure to some I may seem like a crazy person. I guess I am crazy, I'm crazy for MB and for keeping her with us.

The other day MB, My sister and Myself were talking and MB told us that when we have children we should LOVE them like she's loved us so that they will fight for us like we fight for her. My heart broke when she said this because she's talking like she won't be there to remind us when we have kids. I'm not a huge fan of kids but if I do have them I want MB to be there to babysit and keep me from slapping them all day. My anger comes from knowing that all the pain we've been going through could have been prevented if someone at Kaiser had ordered a Pet Scan 3 years ago. Today Yazzy Fresh mentioned that her friend who is on Medicare went to a low income clinic with a stomach ache and the clinic ordered a Pet Scan. MB went to Kaiser with heavy bleeding, growths in her uterus and still no Pet Scan.....I'll let you decide if this is fair or right. I'm just here to state the facts and hopefully bring awareness to others.

Wednesday, December 21, 2011

MB Kicking Ass and Taking Names!

Telemundo came today...MB made sure to remind them that she's sad because her insurance company has abandoned her in her greatest time of need!

Today, for reasons that I can't disclose just yet, I was not able to make it to MBs doctors appointment. In a way its good that I missed it because I would have definitely ripped the doctor a new one. I made sure MB had plenty of back up, I sent Yazzy Fresh and my cousin Rosa and they did just great without me.

Yazzy said that as soon as the doctor walked in and saw that I wasn't there she breathed a huge sigh of relief. The doctor brought a social worker to the appointment for so called "support", we've never had a social worker at our appointment, she was there to back up the doctor and be a witness to my craziness in case I got out of hand, HA, jokes on them I didn't go. I love surprises and by this time Kaiser should know they aren't playing with an ameteur!

From what Yazzy Fresh and Rosa reported back MB held her own and then some. Yaz said MB walked in and all the nurses and techs were running to catch a glimpse of their little celebrity. I'm sure when they saw her cute little butt they were probably wondering why Kaiser was so scared of her.

When it was time for her to go over the Pet Scan MB surprised her by saying," I already know about the tumor on my leg". The doctor was in shock and Yaz says she very obviously fell off script. The doctor stuttered and asked MB how she knew of the results. MB haughtily replied, "My daughter picked up my Pet Scan results Monday and read them to me, those are my results and I'm the patient and I can get them whenever I WANT!" Score MB! After hearing MB's response the doctor very humbly read the pet scan, had nothing new to offer and pissed MB off more when she told her she could get her a second opinion at Stanford. At this point MB was like, "What! when I wanted to go to Stanford a YEAR ago for a second opinion you guys refused to refer me! " My cousin was in a state of pure shock, she was with us in February when we were fighting for that Stanford referral. Now it's too little to late. MB wants Dr. B and she's gonna get Dr. B!

The funniest part of the appointment was when the doctor offered to examine MB, MB was like, "why? you just gonna poke me, do nothing and send me home with more pain pills???.No thank you!" and then she stormed off. I hate that I missed this but am so proud of her for standing up for herself.When MB came home she's like, "what they think I'm dumb! they think i'm just some little mouse they can play with? hell no!" Damn I Love this woman, I love her fire, her energy, her strength and Kaiser, Cancer or nothing else will ever take that away from her, EVER!

 I honestly feel that as soon as they deemed MB terminal they wrote her off and stopped wanting to spend money on her. At this point I'm sure they are all thinking, "Why isn't she dead yet?! why is her crazy daughter protesting!? and why am I working on my winter break because of these crazy latinas!"

Answer, cause we are some BAD ASS BITCHES!....I thought you knew!

Tuesday, December 20, 2011

When she cries at night and she doesn't think that I can hear her...

MB is a strong woman, but at times, she too, has her moments. This last week has been tough. Everytime I look at her, I see that "look", its her "maybe I should just give up" look. She goes through so much pain and discomfort a day that I don't blame her for having these moments. When I see her like this I just ask if she wants to talk about it and right away she cries. Even though it tears me up to see her cry I'm thankful that she trusts me enough to let go and express her feelings. Today, I walked in her room and she just asked, "why? what did I do to deserve this?!, she wanted to know why she couldn't just die fast?, why all the suffering?!, why?!?!?!?!?!?". I could not answer her question. It pains me to see MB suffer, it pains me even more to know that, had the proper tests been done in February of 2009 MB wouldn't be suffering like this. My heart hurts for her everyday.

Friday, December 16, 2011

And the media came to us................

MB has been doing interviews all week!
Two weeks ago MB begged and pleaded with her doctor to prescribe medications that were costing 1,700 dollars a week to pay for out of pocket. Her doctor very coldly told her NO and sent her on her way. Before I left the room I made it clear that we wouldn't call the media, I let her know that our protest would be so huge, the media would call us. Less than a week later I kept my word. NBC was the first to cover our story.

Someone who saw the very first protest was so moved that they left a 10,000 dollar anonymous cashiers check at the door. After Fox did the story CBS, NBC and Univision called wanting an interview with MB. After Univision called Kaiser asking for a statement Kaiser knew we weren't playing. This morning the Vice President at Kaiser, Irene Chavez called and set up an interview. It only took three protests and four networks hounding them for them to take us seriously.

Watching MB do interviews is awe inspiring, even though she's tired and has cold sores from the therapy she still manages to muster up the energy to talk to the media. Yesterday she wasn't feeling very well but she still sat down and talked to NBC. When MB walks into the room everyone is at attention, she has the presence of a star and everyone hushes to listen to what she has to say. There is this energy of peace that follows her.When she's done doing the interviews they take off her microphone and she very quietly and stoicly walks away. As I watch her leave the room, i'm sure everyone's thinking, "Elvis has left the building". She's that powerful.

As my family sat and talked about everything that was going on, we thought about how  many sick people who DON'T have MB's support system and advocates just go home and die when places like Kaiser deny them care. We thought of the hundreds of sick people with no voice. We reflected on how lucky we are to have eachother and Love eachother so much.

Tonight, Bob Marley's "One Love" played as I stood surrounded by friends, family and strangers on the corner of Cottle and Santa Teresa protesting. I was not only standing in the cold for MB, I was standing there for everyone who is too sick to stand up for themselves. I stand for Kaiser's future patients. I stand so that no one has to go through the pain and suffering that MB has gone through, because at the end of the day what hurts one of us hurts all of us! If we let Kaiser get away with all the negligence and lack of care now they will do it again to someone else. MB quietly said to herself, maybe this is happening for a reason, maybe this is our reason for being, God must think we are some bad ass bitches to give us this task!

A psychic once told MB not to worry about me because I was going to make history, this was about 10 years ago. I cried when MB told me this, because I have always felt deep down that I was put on this planet to do something. Maybe, this is it, maybe this is just the beginning.

Wednesday, December 14, 2011

Kaiser Leaks

Kaiser employees are leaking letters sent by Kaiser regarding the protest. If I share the letter I was sent I could face legal repurcussions and or get someone in trouble. I won't share the letter but I will say Kaiser was fair in their message. I will continue to monitor Kaiser letters and make sure they continue to be fair.

Tuesday, December 13, 2011

Oh Papa Bear aka Grumpy

He even looks like Robert Deniro!

If you've ever seen "Everybody's Fine" with Robert De Niro then you've met my Papa Bear. De Niro's character in that movie IS PB. PB has a huge heart and loves us sooo much that sometimes he doesn't know what to do with all his feelings.

On the days that MB is'nt feeling so well PB flips out, he literally has a system overload! Saturday was his Birthday and we went to see his cousins son who had just been shot. After that we went to straighten out some legal issues with one of our properties,not the best birthday for poor PB. When we were finally done taking care of business, we met up with family in Modesto and PB began to unwind by drinking and laughing with a long lost relative.

On the ride home PB was chocolate chip wasted! The ride was emotional. Baby Bear drove, I sat in the passenger seat and PB sat right behind me. We listened to 80's music and at one point PB grabbed my head with his strong callused hands and leaned his forehead against the back of my head and just sobbed. He asked me if I remembered all the roadtrips that we used to take with MB. I am eight years older than my siblings and PB, MB and I have a lot of memories driving to LA,San Diego and Mexico before my lil bro and sis ever came along. We were the three amigos always off on a new adventure. I take after PB, he has always been an adventurer always challenged me to try new things and go to new places. I told him I did remember and that when MB was all better we'd take another roadtrip. We have to have faith and keep hope alive.

When we finally arrived home, I sat with PB as he spoke of his soulmate. He calls Mama Bear "Mariquita" and loves talking about what a nice body she had and how beautiful she was. He told me that when he'd walk in a room with her all eyes were on them and he always felt like the luckiest guy on the planet to have such a beautiful woman with such a strong constitution at his side. He has always admired MB's calm strength and charisma and I don't think he knows how to live without her. Sometimes I don't know who suffers more, the patient or the people that love them?

Just when you'd written me off as the party girl with the big boobs, I go ahead and organize a protest and inadvertantly become "The Avocado Story"

Angel's keep leaving presents on our doorstep!
Thats me, about two months ago in the black dress on the right, this is when I was attending a bachelorette party every weekend, so much has changed since then........
The last couple of days have been surreal to say the least. Ever since an Angel or Angels left a 10,000 dollar cashiers check at the door we have been bombarded by requests for interviews. Yazzy and I organizing a protest from scratch wasn't enough, someone had to leave a ton of cash on our doorstep for the media to take notice. I'm always in awe of what makes people tick.

In a way, I'm glad that MB's cause is getting some attention. It's not fair that an HMO like Kaiser can deny her the treatment that she wants. I don't know why but maybe God chose our family for a reason. Maybe our story is meant to be heard so that people can see the goodness that still exists in the world. Maybe our story can inspire others.

This morning my cousin came to the house with a hundred dollar donation and ready to protest. I broke the news that we weren't protesting today. I can't protest everyday, someone still has to care from MB, she is a cancer patient after all. I won't neglect my Mother to stand on the street with a sign and have people flip me off and yell at me all day. I will only protest on days and times that MB doesn't need me, like this Friday!

When my cousin gave me her hundred dollars she said that she was going to take her daughter christmas shopping with the money but that she thought about it and decided MB needed the money more than her daughter needed the toys. My jaw hit the floor! Most people are willing to help you out as long as it doesn't inconvenience them or their plans. Very rarely, do you find someone who is willing to forgoe a shopping spree with their child so that their loved one can pay for their medication, especially during the holidays.

About 20 of my friends and family stood in the cold for hours yesterday with signs. Some drove over two hours to be with us. Again, jaw on floor. I thank everyone who physically shows up to show their support. I'm not going to lie, the people who tell me their with us in "spirit" kind of annoy me. If you really support our cause don't leave us alone to whether the cold. Show up, hold a sign and be about it, even if only for an hour. I'm not trying to offend anyone, i'm just trying to inspire you to stand up for what you believe in, stop letting everyone do all the work for you. A guy I used to date made a great point, he said he'd rather stand and protest with us then go home and just watch TV. Don't  get me wrong, I understand those who have families and commitments but if you know your just home watching TV then you should maybe think about your priorities in life.

Last Night,my lil sis' best friend and Boyfriend left a Christmas tree at the door. At this point my jaw is just mopping the floor all day. Our situation has brought out so much good, I can't even believe it. We all have a choice in the way we will live our lives, we can choose to work hard and accumulate the most wealth and show off or we can share the most Love and make the world a better place. Before MB got sick I wanted to be rich and famous, now I just want to pay it forward. This Christmas we will have a tree but my siblings and I have forgone presents. I'm thinking we will stuff our stallking with notes of Love instead. This year, we will tell eachother how much we Love and mean to eachother and be thankful that we are all still together. Priceless!

check out our press coverage:

Saturday, December 10, 2011

Love can move mountains!

First there were 2!
Someone saw our protest and left this at the door.....
Then there were dozens!

This is what was in that envelope, so those who say my protest doesn't matter, well it mattered enough for this person to leave a 10,000 dollar check at the door.

The morning of the occupation Yazzy Fresh and I started off annoyed with about 10 people who said they were going to be with us at 9am. Surprise, Surprise , they weren’t, some trickled in around 10 and some didn’t show up at all. I want to clarify that I am not talking about my cousins from Livingston, their brother was shot in the early AM and was in critical condition, they had a MORE than legitimate reason for not coming.  Our prayers are with them and if you’re a religious person I ask that you pray for him to.
Yaz asked if I wanted to wait until more people showed up, I told her, “No, we said we’d start the occupation at 9am and we will start at 9am!” Eventually our buddy Alan showed up,then Yazzys sister, then  my cousins, then more friends and family. At one point, a woman who had been screwed by Kaiser joined us and brought her own signs. She was also an ex- Kaiser patient and when she came down with a rare lung disease Kaiser jacked up her insurance to 1,000.00 a month and she could no longer afford it. NBC 11 showed up at 10am and we made it on the 6 o’clock news, the rest of the news stations didn’t have enough vans to send out(that’s code for we don’t think your “news worthy”), I interned in the newsroom for two years, I know what’s up.  
By 3pm we were protesting in FULL force! We had about 30 people out there with signs, someone gave me a blow horn and the rest is history. I took advantage of the 4 way stop and started telling South San Jose Mama Bears story. I was amazed at how many people rolled down their windows to listen, after hearing about MB and her struggle people would honk and send us their support.
 Not everyone was quite so friendly, a neurosurgeon at Kaiser flipped us off.  I can understand his anger BUT if he would have stopped to listen to our story maybe he would have understood our outrage. He wasn’t the only one to flip us off, others yelled at us and told us to go home. I apologize for making some of my Neighbors uncomfortable yesterday but we can’t keep pretending that our neighborhood Kaiser is the best ever. We can’t let injustices take place in our own backyard and look away. That’s what our parents and our grandparents did and that’s why are country is the way it is. That’s why the FDA is controlled by the pharmaceutical companies and our president can’t manage to provide his citizens with adequate health care. It’s time for WE the people to stand up and fight for ourselves and our future generations. We can’t wait for our politicians to change things. Like MB always says, if you want something done right you have to do it yourself. Yazzy Fresh and I witnessed an incredible injustice directed towards MB Monday and we didn’t just go quietly into the night…..WE FOUGHT BACK, WE INSPIRED OTHERS TO FIGHT BACK,WE MADE A DIFFERENCE and we’re not done. We will be back out there Monday and next Friday. We won’t stop until Kaiser provides Humane Healthcare to ALL their patients.
A special shout out to Yazzy Fresh, my partner in crime. She kept me focused, She gave me strength and without her I couldn’t have done any of this. When we were alone in the car I looked over at her and said, “You are my sister”.  Friends like Yazzy Fresh are hard to come by and I thank God for sending her my way. She worked so hard that her boyfriend thought she was obsessed,you’d swear it was her mother she was fighting for.
I thank everyone who came even for a little bit. Your support meant so much to us. Some people took the day off, others drove over 2 hours to get there, others brought us food. They all did it for the Love they have for MB.
When we finally made it home Friday night, MB told us that someone dropped off a bag of avocados on our doorstep and inside the bag there was an anonymous check for 10,000 dollars. God is definitely sending us Angels and letting us know that we are on the right path. Hearing this news made my day. One of our neighbors was so moved by our protest that they left this check. This inspires me to work harder and I THANK whoever gave us that money from the bottom of my heart. MB would like to let you know that you are her Angel and that when she is better she will personally go to Burzynski’s clinic and give a patient in need 10,000.00 to continue their treatment. So whoever you are, please know that you not only made a difference in our lives but you will be making a difference in another patient’s life as well. We Love you all. Thank You and Goodnight.

Friday, December 9, 2011

My Bday Dinner....

Bet Y'all didn't know I was crafty, I put together the centerpieces myself!

I did these too!

Making posters after Bday Dinner!


Even though I am going through a lot, I still feel like the luckiest girl on the planet. Things aren't perfect but I have great friends and a great family....

Tonights Birthday dinner was a perfect example of how I'm so blessed. Most of my friends dragged their tired asses from work to help me celebrate my BDAY and make posters. I am so thankful for the sacrifice they made to drive long distances in the cold and share a meal with me. Laughter echoed through the house all night. We drank, we ate and we organized.

Wednesday, December 7, 2011

I feel like Elle Woods in Legally Blonde...

Correction Yaz made 8 posters today....She would, best Co-Organizer EVER!

Tonight I went to my first Occupy San Jose meeting. It was different to say the least. The occupiers do this thing called general consensus. What they do is propose something and the whole group has to agree, the way they show that they agree is they do jazz hands. When I proposed Occupy Kaiser they all did Jazz hands at first and then one annoying guy starts asking a bunch of questions and in the end only half of the group did jazz hands, the rest did sad jazz hands lol. The good news is some may still join my movement as individuals which is cool.

At the meeting I felt like Elle Woods at Harvard. I was definitely out of place. Earlier in the day, I spoke with my friend at KTVU, he was collecting information about my occupation, he asked what I was going to do. Occupy Kaiser DUH, but his question really got me thinking, how did I get here? I normally Occupy the parties or Vegas, what is my dumb ass doing occupyng Kaiser?

Surprisingly my friend Yasmine has gotten really into the occupation, I can safely say she's obsessed! Every 5 minutes she's texting me another idea and today she single handedly made 6 posters. She Would. I love that she is so into it, it helps a great deal. I still have to do a lot for MB and I'm starting to get tired but I'm going to keep pushing and fighting because no one messes with MB and gets away with it. When people say, "YOUR" organizing Occupy Kaiser my response is, "What, like it's hard?" then I do a little dance ;)

Tuesday, December 6, 2011

MY BIRTHDAY!!!!!!!!!!!!!!!!!!

MB and I at my last BDAY so much has changed since then.
I've always been a Birthday whore, I'm one of those people that wants the whole week instead of the day. I blame MB, ever since I was a little girl MB would always throw me a huge party with lots of family, friends, food and presents. She'd dress me up in my poofy paisa dress and I was the QUEEN! Everything had to go my way, all my cousins had to play the games I wanted and do the things I said. If I wasn't the first to hit the pinata you would find me crying, throwing a hissy fit, If I wasn't the one with the most candy, hissy fit, If I wasn't the very first in line, hissy fit. The kids that tried to "help" me open my presents lost limbs! Yes, I was one of THOSE kids. Are you really surprised?

Today I spent the day thankful that I still had MB. She peeked in my room and whispered, "happy birthday". I couldn't have asked for a better way to wake up! I love my little Baldy. I continued to organize Occupy Kaiser and went about my day as normal. No cake no singing no nothing and it was just fine. I did get a massage but thats about it.

Some of you may be wondering about Taliboo. Yes, to my surprise he has been texting and calling me. He refers to his dog as our son which is cute. Today he called and sang Happy Birthday. It totally made my day!

Sunday, December 4, 2011

Reunited and it feels so good....

He's the Yin to her Yang

My second family minus one but he was there in Spirit;)

I was the flower girl 25 years ago, they donated their dollar dance to MB. Super Amazing couple;)

Chiveto is on my right and our big bro's are behind us, they look like our body guards then but they loved picking on us;)

As soon as MB walked through that door PB could not stop hugging her, his face lit up instantly. When she sat down and made herself comfortable, he sat right next to her as close as he could and could not stop touching her face, hands and feet. He was in heaven, his Prozac was BACK!
 MB’s illness has affected all of us but most of all PB (Papa Bear).  When I worked at the American Cancer Society I would hear stories of women whose husbands left them when they were sick. PB has been an exceptional husband and father throughout this whole ordeal. He confides in my Godmother frequently and told her that sometimes he just sits in his work truck and cries as loud and as hard as he can. One time he was crying so loud that a passerby actually knocked on his window and asked him if he was OK. Oh Papa Bear, he’s really sensitive below that macho man exterior.
MB and PB are soulmate’s. They met when MB was 16 and PB was 20. They dated long distance for a year. PB would drive from LA to San Jose to visit MB on a regular basis. One day, she called him up and his uncle answered the phone, he asked her if she was the girl in the red car or the blue car? MB quickly let him know she didn’t have a car and broke up with PB right away. Yeah, PB was a player. Four years later, after not having spoken or seen each other, MB and PB ran into each other at a random bus terminal in Mexico. Three months later the two were married and the rest is history. When I asked PB why they were married so quickly PB said he just couldn’t let her go again. Their Love is Epic! I’ve never settled for any Man because of the standards PB set. He’s handsome, charming, loving, charismatic and hardworking, a very rare breed of man. His only fault is that he can be grumpy and negative, nobody’s perfect.
Saturday, I decided to go to my uncle’s 25th wedding anniversary. I was tired as hell but I just couldn’t miss out on a chance to see all my cousins.  My Godparents live in Livingston and they are my second family. All my God brothers and sisters are like my real brothers and sisters. I love seeing them and their kids. When I was a kid we would go over every summer and sometimes my parents would let me stay a whole week. My God brother’s favorite pastime was to torture me and make me cry except the youngest one. I called him Chiveto, his friends called him Balooga but his real name was Luis Alberto. We were the same age and he knew all too well about the bullying, he was very light and his brothers would call him white trash, they would. Chiveto and I invented our own games and teamed up against the big bullies. Ten years ago he was murdered  and none of us have ever fully, or will ever fully recover.
The uncle who celebrated his 25th wedding anniversary is My Godmother’s brother. I remember when he first got married, I was the flower girl and Chiveto was the ring bearer. How I wish we could have taken a picture together 25 years later. Who knows why God does things. All I know is on this last visit I grabbed one of the many pictures of Chiveto and asked for his help with MB. I know he’s close to the big guy and can probably put in a good word. He is our Angel;)

Friday, December 2, 2011

I had the time of my life and I've never felt this way before.....


Our fantastic nurse Amanda, We are going to miss her!

MB dreaming of PB

Dr. Yi and Ana discharging us....Happy DAY!

I almost cried when I kissed Taliboo goodbye at the airport….almost. I didn’t, because I’m cooler than that. MB met him for the first time today and definitely liked him. She said, “he’s soooooo sweeeet”. She really appreciated the fact, that even after working the graveyard shift and not having slept a wink, Taliboo was still nice enough to drive us to the airport at noon. He’s the BEST Texas BOO ever. I will definitely keep him in my little black book as my 713 Ho… just kidding! Actually, as soon as we got to our gate I deleted his number. I just don’t want to get my heart broken.
The ride over to the airport was pretty hilarious. As soon as we stepped into Taliboo’s car Taliboo apologized for the mess, his car was actually immaculate, as soon as he said that, I KNEW MB was going to say something about my messy car so I beat her to the punch. I yelled, “MB, don’t even think of telling him about my car. MB exclaimed, “ I was just thinking it and you called YOURSELF out, YOUR BAD!” she would, I need to stop teaching her cute catch phrases.  MB was analyzing his accent and telling me it wasn’t that strong. I don’t know why but I hear a heavy accent . When I asked her if he looked Arab, she said ,”no, he’s just hairy”. She also told him I call him Taliboo behind his back. Luckily, he already knows I call him Taliboo so it was ok. I love how MB isn’t afraid to put me on blast. She thanked Taliboo for keeping me company while he got us a cart, he HUGGED MB goodbye and told her that he wished nothing but the best for her, he kissed me and went on his way.  MB thinks I should definitely try to make something work with Taliboo. She Loved him!
The last three weeks have been like a dream. There was a lot of anxiety at our house before we left and while we were gone. Travelling with someone who has stage 4 cancer and is given a couple more weeks/months to live is no joke. A Lot could have gone wrong while we were away. We took a HUGE risk by flying to Texas in MB’s delicate condition.  Baby sis and Baby Bear bared the burden of grumpy Papa Bear, his nerves were on edge the whole time we were away and that makes him very cranky and kind of unbearable.
Not only did nothing go wrong, but everything seemed to magically fall into place for us. From the very beginning we were hooked up.  Everyday we were here, I witnessed the power of all of your prayers, they were guiding us to the right people, the right places , the right discounts. . The visits to the clinic were always smoothe and the staff was always nice. I remember one visit when MB was telling our Russian Physician Assistant, Ana, that she was going to kill her with the costs of all the medications, Ana, in her very heavy, very Russian accent simply said, “No veee don’t kill you here, veee kill cancer”. Ana is sweet but not very funny, kind of dry, but I think that was her attempt at a joke.
Everyone keeps saying that I’m awesome and MB calls me her little Angel but I’m just doing what a daughter is supposed to do for her mother. I Love MB more than anything , that Love  gives me the strength to keep fighting for her. We joke, that now I’m the MB and she is my baby. Let me tell you, somedays it feels just like that. Just travelling through the airport with her is a pain in the booty! I have to carry all her bags because her back hurts and she has to pee every 15 minutes. I’m no saint. I get annoyed. Sometimes, I yell at her to stop drinking so much damn water! I’m trying to check us in and she HAS to pee, I’m trying to get us past security and she HAS to pee! I try to check my FB while we are waiting at the gate and she HAS to have her crackers! I’m telling you it’s like travelling with a two year old! I feel bad but I’m not used to being so needed by another human being. I actually feel like her MOM. I keep telling her that I’m going to give her away, now that her blog is taking off I’m sure someone wants MB. She told me she’s going to put an ad out that says, “WMV for sale”. I asked what a WMV was and she’s like, “WILD MARIELA VARGAS”. She would!
It’s crazy how the dynamic between us has changed. She’s like my little Baby Bear and I have to protect her, she even looks like a baby with her bald head. I have to admit, even though I’m tired as hell andI want to spank her on her BOOTY, there is an immense satisfaction that comes from caring for another human being. I feel good when I see that her symptom’s are improving. I like seeing her smile and crack jokes . I love listening to her when she tells me she’s gonna beat me, or  when she tells me that she’s gonna slap me across the face if I don’t stop being such a smart ass! I feel a sense of accomplishment when she is thriving. I think to myself,” I did that” and no  matter what happens I will NEVER live with any regrets, because I know , in my heart, that I’ve done my best for her, just like most of you would for your MB’s.  Yes, yes, Y’all I just had, what Oprah would call an “AHAH moment”!....I still can't stand babies on planes!...there should be a law against that or baby Nyquil so I don't have to hear their crying!

Thursday, December 1, 2011

Only Time Will Tell.......

I'm going to be leaving a piece of my heart in Texas and MB will be leaving most of her life savings, neither of us regret it though. Its only been about two weeks since MB started the treatment and I can already tell that it is working. When we arrived both of her legs were swollen and she was coughing a lot. Within the first week of treatment the swelling dissapeared and this week she has barely coughed. She feels like her belly is less swollen which is a good sign because most of the tumors are in her belly.

Today MB told me that maybe she would only take one of the pills instead of the whole regimen. That really upset me because I feel like everything in combination is helping her. I understand why she only wants to take one, keeping up with the regimen will be around 10,000.00 dollars a month. When we get home we have a huge battle to fight with Kaiser to try to get them to cover all her meds. I have been trying my best to fundraise but I understand this is a difficult time for most to give.

I will definitely miss Taliboo, he is taking us to the airport tomorrow. The doctors told us we need to come back in two months so maybe i'll see him again maybe not. Only time will tell.

I wish I was a billionaire so I wouldn't have to ask for money but this is what my MBs disease has reduced me to. I Thank anyone who can spare some dollars to help us continue with the treatment until we find some sort of insurance to cover it. Thanks to everyone who has supported us. Every little bit helps.

Wednesday, November 30, 2011

Angels all Around Us

Taliboo sweet enough to take me all the way to the Third Ward to get some Thelma's
No matter how hard I try I will never fully understand how MB feels and what she's going through, Luckily Barb does and they have been a great support system for eachother

This is our Cali crew in FULL effect. West Coast! Barb and Her Hubby are next to MB, Jimmy's wife is next to me, Jimmy is in the picture down below, he had to have an Amino acid infusion because he refuses to eat HEALTHY, he would!:)
Jimmy is a character, he refused to see the nutritionist and when my MB told him he had to drink 6 glasses of water a day he was like, "Says WHO!"

Our trip to Texas has been amazing to say the least. Every single person we met at the clinic or elsewhere was so special. I have never met so many good hearted people at one time. MB's new friends made her laugh, gave her tips on insurance companies and inspired her.

Today MB was extremely tired from the chemo she was given Monday. Dr Burzynski does use chemo when the caris report says it would be beneficial. I told MB that if she felt that bad she could skip the clinic. MB said, "No, My friend Barb still goes on the days she feels bad and I will too". MB threw on her clothes and waddled her little butt to the car. Who do you think was the very first person we see when we got to the clinic? Barb, MB lit up and was like, "You inspired me to come today", Barb was like, " I did?". All Barb had to do to inspire MB was show up when she felt like shit, how crazy is that?!

Jimmy and his wife are our other faves, Jimmy is just a comedian and his wife is so great to talk to. Really down to earth amazing people. Everyone gets different treatments because Dr. B specailizes the treatment to your tumor. Some only have to take 3 relatively cheap meds while others are given 6 meds and 2 of them are 500 dollars a day. One lady was charged 26,000 for one infusion of chemo!Jimmy and his wife made up this thing, whenever anyone walks out of the financial office, their like so, did you buy a new car or a used car. It's their way of making light of the incredible stress of having to pay the first months meds on your own.

Taliboo is another Angel placed in my path. When I first met him I thought he was full of shit but he has been so kind and treated me so well its unbelievable. We met last Wednesday and have seen eachother everyday except Thanksgiving. When MB and I were at the clinic she was making fun of me and calling me a cougar in front of her friends. She was like, "can you believe she's been dating this 25 year old for almost two weeks, she's just like her grandfather, hoes in every area code ".Way to put me on blast MB!

My friend VTOWN said I had to try Thelma's BBQ cause she saw it on TV. Taliboo was nice enough to take me and Thank God he did. When I walked into Thelma's I quickly text VTOWN and was like, "what show did you say you saw this place on, was it America's most wanted!?" The place was pretty ghetto but I'm guessing that's part of its charm. Taliboo is relatively shy but bared with me while I made him take my picture, I can be pretty embarrasing but I think I got some good shots for VTOWN. He just kept telling people I was from California, I'm sure people must have been wondering why the hell I was so excited to be at Thelma's!

Taliboo and I have discussed what will happen to us when I leave. We've decided to just play it by ear, lets be realistic, where could this possibly go?!?!?...We live in two different states! He is a good looking guy with a great personality and I aint to shabby. I'm sure we will both meet other people in our zip codes eventually. I am just grateful for the time we have spent together. He has been my Rock and I couldn't have survived this trip without him! I am grateful for all our Angels, Jimmy, Barb, and their spouses. I pray everyday that Barb, MB and Jimmy make it, I see us all having a reuinion when they are all healthy. It will happen!

Tuesday, November 29, 2011

The Doctors, or as our Oncologist at Kaiser calls them, "The Charlatans"

Dr. Burzynski Jr. and Physicians Asst. Ana, that cute gal in the middle y'all should know by now, lol

The primary complaint from people that go to the clinic and don't pursue the treatment is costs, plain and simple. Not everyone can spend 30,000.00 American dollars on a 3 week visit, and then continue to spend anywhere from 5-20,000 a month for the meds to continue the treatment at home. Those who have a good insurance company are able to get these medications covered when they go home and they usually do just fine. People who have Kaiser are fucked and have to fight tooth and nail to find a doctor, who will even prescribe the meds within the Kaiser system, no prescription from a Kaiser doctor no insurance coverage.

Why is the cost so high? Well,if you actually think about it, this is what oncologists are charging cancer patients, the only difference is that when your insurance is paying for it, you don't see the enormous bill you just see the co-pay. Burzynski charges for the treatment up front because a lot of insurance companies don't cover his services, his treatment is still considered "experimental" .

The doctors at the clinic have been nothing but nice to us. When we first got there we sat down with, Burzynski Sr, Jr, Dr. Yi and Ana. They explained the gene targeted treatment and how it works to kill the tumors from all sides. Let me clear something up, we were never told MB would be cured, we were only given hope and that they would try their best. MB and I appreciated the honesty.

The gene targeted approach makes sense to me, in essence what  these doctors are doing is testing your blood and tumor samples, what they look for is genetic markers that tell them what receptors and or channels your tumors are using to grow. When they've identified these receptors and or markers they begin to prescribe off label medications to suppress the channels that are allowinng the tumors thrive. For example, MB has a rare uterine cancer and there are only 3 chemos FDA approved for her type of cancer. Because her tumor samples and blood work expressed receptors present in liver and breast cancers the doctors here prescribed liver cancer and breast cancer meds for MB. Right now MB is taking a combination of 5 FDA approved cancer drugs off label. She is also taking Dr. B's famous antineoplastons. Dr. B is in stage 3 of FDA approved clinical trials for the antineoplastons.

I don't know about you but this sounds pretty damn scientific, logical and effective to me. Why aren't places like Kaiser doing this? Well, as you can see it takes time money and know how to put all this stuff together and Kaiser really isn't interested in investing that much on a patient. The Caris testing (thats where they test each individual tumor for its genetic components) is 5,000 dollars. You think Kaiser wants to run that test on every single cancer patient? It wouldn't be cost effective.

Back to the Doctors at Burzynski, Greg, Burzynski's son, has been super nice and helpful. Last week he spoke to us for about half an hour explaining the treatments, why they were doing them and letting MB know that in about 2 to 3 months after another pet scan we would see where  we were. He was hopeful but never gave us false hopes or illusions. When MB asked him what her chances of survival were, he said that "traditionally" speaking they were slim to none. Then he made a very good point, stating that their treatment is new and has'nt been done on enough patients like her to get a clear percentage. His answer was basically lets try and we will see how you do. He couldn't tell her she was for sure going to live BUT he also didn't tell her to go home and die. That is what sets this clinic apart, they always give you a fighting chance and that has a lot to do with a patients survival.   He even recomended some books for MB about the power of the mind and positive thinking. I have pretty good instincts and never have I felt lied to or bamboozeled here. Some may argue that Dr. Bs success rates aren't very high, well gee he tkes in all the Stg 4 terminally ill patients, the fact that he saves any of those is a miracle in and of itself.

I've said it before and I'll say it again, I wasn't born yesterday, I realize that this may not work, but what if it does? The way I see it, we have nothing to lose but money and thats ok because everyone knows that money grows on trees;)