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"

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;)

How far will you go for those you LOVE.....????

She loves making new friends at the clinic!

MB working the room, she forgets that her back hurts when she is at the clinic, I think they are talking about how much they hate Kaiser, true story;)

I stood in front of MB, leaned right over her face, looked straight into her soft brown eyes and said, “YOU ARE GOING TO LIVE!”, she whispered back, “I am going to LIVE”. We were both inspired because we had just spoken to a woman from Sweden. She was diagnosed with TWO  inoperable brain tumors! Like many of the people we’ve met, she was given 6 months to live, no “traditional” medications could be used on her tumors. She had heard of Dr. B from a friend in Oklahoma who knew a man whose wife had been cured by the treatment. The woman from Sweden began treatment a year ago. Today 90% of the aggressive tumor is gone and the stage 2 tumor is practically non-existant. The woman gave us her number and said that if we had any questions we could call her. I feel like God places these people on our path for a reason. Meeting survivors inspires MB, almost immediately you see her eyes shine and her mood change. One of the patients in the lobby put it best, she said, ” I know we are all right where we need to be, all we have to do is continue to have faith and stay strong for our loved ones, the rest will take care of itself”, AMEN to that sister.
Upon leaving the clinic, we met a Man whose 5 year old daughter was discharged from St. Judes a month ago. When he found out his daughter was sick he sold his construction business, sold his house and moved his entire family to Tennesse.  St. Judes just radiated her brain  tumor and ended up doing more damage then good. Doctors there, told him his daughter had 3 weeks to live and he should just take her home to die, they told him they’ve never been able to save a child with the type of brain tumor his little girl has. Unable to accept his daughter’s death this man DROVE to Houston to see Dr. B. In true “Charlatan” fashion, Dr. B was honest and let the man know that his  little girl had maybe a 10% chance at surviving with his treatment but that he would do his best for her. The man and his wife knew the odds and decided to spend the 30,000 to try to save their child anyway. The child has severe brain damage from the radiation administered at ST. Judes.
Stories like these BLOW my mind, when he was telling us about his journey I almost broke down and cried right there in the parking lot.  It amazes me how people cling to life and still attempt to save those they love until the very end. I think about this little girl, I wonder what quality of life she will have if she lives, the radiation has damaged her brain so much that even if she survives she will not be “normal”. Her family doesn’t  care, they believe in miracles and they just want a little bit more time with their little angel. We all know the odds but we are all fighting for one more chance with those we love.

Listening to these stories is inspiring, you feel good when you go to the clinic because everyone is so upbeat. There is a sense of community in the waiting room, we are all family. There are situations that show you the disintegration of humanity. Then, there are places like Dr. B’s clinic, where you see the best in the human condition and the undeniable strength that lies within us all. We can all make a difference.

Monday, November 28, 2011

Laughter is the best medicine;)

Jimmy is MBs best medicine! She's still laughing at all the funny things he said today
MB smiling again!
When we were soldiers.

Taliboo shaved his whole face just for me!...and work lol

The day started off rough. MB woke up in excruciating pain. She took a shower and I could hear her mumbling her prayers all the way through. When she mumbles those prayers, I know she's hurting and I worry. This pain is not new, we were introduced to it a year ago when MB's back tumor began to grow, the tumor is located on her L4 vertebrae,when it grows it squeezes her nerves and makes her feel like her leg is being crushed to pieces. The doctors radiated it last year and it shrunk but unfortunately you can't radiate the same place twice so now we have to wait for Dr. Bs gene targeted therapy to work.

Understandably, MB was in a crappy mood all morning. In her moments of weakness, she starts being really negative and giving up on herself. I have to be honest, today she pissed me off! I was like, " I know your going through a lot of pain but you can't give up, it will all work out, you just have to believe!". She stresses a lot over finances, she starts saying maybe she'll only do part of the treatment and exclude the really expensive stuff. I told her she was doing everything and we'd work on a way to pay it. Luckily, as soon as we made it to the clinic we asked the doctors if there was anything they could do about the meds. The doctors here know medications are expensive and they do try to work with the patients who have crappy Kaiser, it's definitely easier if you have a PPO(remember kiddies when your picking out insurance spend the extra 50 a month on a PPO). Our doctor prescribed an older drug that does almost the same thing as the vampire pill(the 500 dollar a day one). That drug is only 20 dollars a day, much better. MB needs to start realizing that I am always right! Now we just need to find a doctor who will give her chemo mixed with Avastin, the chemo is cheap but Avastin is 4,000 and they both have to be administered intravenously. One battle at a time I guess.Dr. Yi prescribed Oxycoton for MB's pain but apparently there is a shortage in HTOWN because every pharmacy I go to doesn't have it!

As if by fate, MB ended up not needing the pain meds. When it was time for her to do her chemo cocktail they sat her next to Jimmy, Jimmy and his wife are from Long Beach and they are hilarious! There wasn't a place to sit in the chemo room so Jimmy's wife and I went outside to wait in the lobby. As we left MB looked down and out, she was mentally, physically and emotionally exhausted. Two hours later, it was time for Jimmy's wife and I to go back and give our patients their PB's, those are the antineoplastons they have to take every 2 to 3 hours. I hadn't even walked in the room when I heard MB's laughter. Jimmy had revived her, he loves an audience. As a seasoned dance instructor in LA, he's used to worknig the room! MB was a different woman when I walked in, Jimmy and her were sharing crackers and jokes and having a BLAST. When we left she got right up and walked to the door, no mumbling no huffing no NADA. I asked her about the mornings excruciating pain and she said the icy hot patches had helped her, I think it was the Jimmy patch that got her on her feet.

Later in the day I needed my Taliboo patch, the days events and the horrible letter from our Kaiser doctor  left me all knotted up. When I went to his place he gave me the best massage and we just watched TV and laughed at all the crazy people there are in Texas. I needed those laughs! Later, I watched Taliboo shave off his beard for work and I left.

When I got back to the hotel MB and I were laughing at our Grumpy Papa Bear. One thing you have to keep in mind about him is that when he is under a great deal of stress he loses all of his social graces and manners. Everything annoys him. It's actually kind of funny to watch him in action, the only person who can calm him down is MB. She is his Prozac, without her he is a crazy lunatic. It's been 3 weeks since he's been off his MB meds and he's looking to explode. Word to the wise just leave the angry PB alone until further notice. We call him Grumpy for a reason lol.

Also, i'm sure most cancer patients and their relatives will agree that we don't like to be bombarded with questions about the illness, the medicines and things like that. We deal with it everyday and hate having to talk about it with everyone. If your that curious read the blog. If we don't bring up the subject you shouldn't either. MB stopped going to parties after a while because the constant curiosity about her disease annoyed her. Think about it this way, if your husband just left you ,would you want people asking you about it everytime they saw you? Same with Cancer. We have a don't ask don't tell policy and now you know;)

This whole ordeal reminds me of the show Goldrush. It's a reality show about miners who invest all their money in equipment and supplies just for a chance at hitting it big in Alaska and returning with piles of Gold. Even though most think they are crazy they keep hope alive and take a risk. There was a miner on the show who was moody, arrogant, negative and downright annoying, finally someone beat him up and he just went home penniless. The miners who worked hard, had a positive attitude,worked together and stayed focused when all looked hopeless actually started finding nuggets of Gold. I'm just trying to keep MB focused on her own gold nuggets, her health.

Good Night, God Bless and please check out the Gold "donate to Mama Bear button on the top right". Please continue to support us on our journey a little or a lot is appreciated. Let's keep hope alive for MB!

Sunday, November 27, 2011

My new heart is coming in nicely!

I taught him how to work those chopsticks
YES I AM!!!!
He puts a smile on my face on the days that it's hard to smile;)

Thank God MB was feeling better today. I bought her some icy hot patches for her back and they helped. We didn't want to push our luck so MB decided to stay home. She wasn't good enough  to go out but she was better. Eric and I decided to go out for some sushi and then a movie at his place.

We went to RA, to a place thats a lot like Santana Row, and the  Sushi was excellent! TX Boo has started calling me sweet pea and baby. Finally, I figured out a good nickname for him. His new nickname is...tantararan...TaliBOO. I'm sure you can guess why, he looks Arab but is Mexican. He doesn't speak a word of Spanish and sounds more like a cowboy than anything. Taliboo and I had our first altercation today, we've spent everyday together since wedn night so I guess it had to happen lol. When we were at dinner I was being loud so he shushed me, oh no he diiin't. I let Taliboo know that I don't like to be shushed and Taliboo let me know that he doesn't like me telling the world our We made a deal he'd never shush me again as long as I didn't say really personal things in a loud tone again. I'm starting to see how we are kind of opposites. He doesn't like attention and I can be a bit of an attention whore. I wonder how these differences will work out in the long run.

When we got to Taliboo's place we cuddled on the couch and talked. I told him I had a nightmare last night. He said it was probably do to the stress. I felt comfortable enough to tell him that I was scared that something might happen to MB while we were out here in Texas. When I said this, he held me real tight and whispered, "You have Me here and Monique, you are not alone" What happened next is probably TMI for this blog but if you care enough to know you can always email me;) Oh and if your one of my aunts, uncles, cousins or anyone who knows my MB and PB lets not mention this to them either;)

If you know me, you know I don't usually let my gaurd down with my sad feelings. I don't like being vulnerable or mopey around people. Mostly because I don't like being a downer or having anyone feeling sorry for me. I get my attention the old fashion way by being loud and showing my boobies, lol j/k. With him, it's different, he just lets me be me. I'm starting to see his imperfections too but they don't bother me. It's like when he annoys me, which he now does, I don't want to automatically slap him in his face or tell him off. I'm having all these weird feelings I've never felt before and it's scary, really scary. Egh I guess thats what happens when you get a new heart with feelings...UGH...could this really be more than just a TX fling????....Only time will tell.

Saturday, November 26, 2011

What if this doesn't work?

What if this doesn't work? On days like this I'm forced to ask myself that question and it literally tears me apart. MB didn't leave the room today. Her back pain is getting worse and i'm worried the tumor on her spine has started growing again. Last time it grew, she reached a point where she couldn't even walk. They radiated it and it helped but they can't radiate it anymore so Dr. B's cocktail of cancer meds just has to work, its one of our last lines of defense.

I went to the clinic to pick up more meds for Mom today, luckily Eric(cowboy tx boo) decided to join me. When I'm with him I forget all my worries, he makes me laugh, he holds my hand, he holds me close and he makes up goofy songs with me in the car. He is a gift from God, without him to distract me I'd probably have jumped off a roof by now.

After we got Mom some meds, food and patches for her back we went to his place for a while to watch a movie, we just talked and cuddled and he heated up leftovers for me. It was nice to just chill and relax and be alone.

Around 5pm I decided it was time to get back to MB and he dropped me off. Its kinda weird going from a state of pure bliss to pure depression. When I got back MB was good but she was definitely hurting. It kills me to see her like this and know there is nothing I can do. I try to distract her but she is just more quiet. She is just so much in her head and sometimes I think the pain sparks negative thoughts within her. I can't even imagine how she's suffering physically and mentally.

A friend of mine from SJ called to tell me his Dad died of cancer last week. He said his Dad only fought for 3 months, MB has been fighting almost 2 years in January, we are blessed to have her but it forces me to wonder, if she doesn't make it why all the suffering. WHY?!...What would have been the point?..Sometimes God pisses me off. I just have to have faith that he/she knows what she's doing. If not I'm fixin to file a grievance, anyone know where I'd mail that too???

On a bright note, MB said if she felt better tomorrow she wanted to try to get out and eat. Tomorrow will be a better day! I know these medicines will work we just have to be patient and wait for our miracle cause I know it's coming!...It has too!
Eric(Cowboy) and I's first Thanksgiving dinner with YAYO his dog, yes he  named his dog after cocaine lol!

I danced...again, and kissed some more;)....Thank God for this Cowboy!

Why does my soulmate live in Houston!???....he would!

Best double date crew EVER!

Texas Boo and I having a fabulous time!
He does action shots with me!
So, I'd like to think I'm strong but somedays the stress just gets to me and I start getting panic attacks. As we were driving home on Thanksgiving I had a pretty severe attack. Friday, my nerves were just on edge, my head felt heavy and my left eye wouldn't stop twitching. Waves and waves of anxiety splashed over me throughout the day,I felt like I was drowning. When my nerves get this bad there is only one person to call, My BFF Ada Silva! She is  amazing, she lets me cry and makes me laugh all at the same time. She told me, "girl, I Love You, I miss you, cry all you want with me but when you get up to the room with MB you better have your shit together, now go out with that cowboy and do what you do best to relax!" (get your minds out of the gutter people, what I do best is have fun, lol).

I took my BFF's advice and accepted and invitation from the cowboy to go to his cousins wedding. Let me begin by saying that he is one of the most polite and sexy guys I have ever dated. Usually you either get sexy but stupid or polite but fellito(nice way of saying ugly in spanish). First off ,I made him wait an hour in his car while I finished getting ready. Thats his fault, he showed up for our date 15 minutes early and I was running half an hour behind. When I told him I'd be a while he said, "take all the time you need Mam". He calls me MAM how cool is that?!?!?!

At the wedding he introduced me to all his friends and family. I even met his brother. He loves showing off his girl from Cali, lol. My BFF and Hubby met us at the wedding and we all ended up having a blast. I even line danced! The whole time I was dancing I kept thinking to myself" IM LINE DANCING IN TEXAS I AM SOOO COOL", lol, yes, the little things bring me such joy now. My cowboy dances any song I want with me, whether he knows how to dance it or not, he tries, and thats good enough for me.We had soo much fun we were the last ones to leave the wedding.

He drove me home, I ran up, let MB know I was back, threw on some sweats and ran back down to chill with him in his car. We talked for HOURS! I just let the smoothe sound of his voice wash over me. The accent and his smell drive me insane! He smells so freaken good. Ok, Ok we didn't just talk, we also kissed, and tugged and pulled and kissed some more. No smushing, I have decided not to go there with him. I have a feeling I'd like it to much, I'd probably go through withdrawls when I got back to Cali. He is so passionate and patient. Totally respectful. I ended up falling asleep in his arms while he brushed his fingers through my hair. Lets just say I slept like a baby, the stress was GONE!

When I realized it was 4 am I ran back up to my room giddy as hell, MB was like you were NOT down there with Monique(my TX BFF), DANG IT, I can't get anything past her. I was like "no, no I wasn't I was making out with Eric (My Cowboy), MB just gave me an exasperated look and then started asking me how he was and we exchanged the juicy details. MB stopped trying to be my MOM about 15 years ago, now she settles for being my BFF and exchanging the most intimate moments of my life with her. She is amazing, we just layed there and talked like two roomates in college exchanging their date stories. I am so blessed to have this type of relationship with my MB. She is one of a kind:)

Thursday, November 24, 2011

I have always depended on the kindness of strangers...

We always have eachother!
Me and the physical embodiment of Compassion!
They welcomed strangers into their home,beautiful family.
I can't sit here and write that today wasn't an extremely difficult day emotionally, that would be a lie and we can't always stay positive,we are only human. I don't think that our family has ever spent a Thanksgiving apart, It's our Holiday, we've spent Christmases apart but never Thanksgiving. MB just broke into tears when she thought about what we would be doing today if she were healthy, we'd be bickering over my mashed potatoes, running around decorating the house, anxiously awaiting our relatives who can always be counted on to make us laugh. We'd be eating and laughing with those we love as we exchange hysterical stories around the table. Being here is just a reminder that we may not see another Thanksgiving like that. Everything has changed.

PB, BB(baby bear) and Lil Sis also had it rough, I think they just ordered tamales.My heart broke thinking of the depressing Thanksgiving dinner they were having. One of my uncles did stop by after my Dad invited him. Our beautiful neighbor who is an ANGEL, dropped off a cooked Turkey and dessert. People like her inspire me to be better. She visits my MB every Friday and has made a concious effort to drop off food for My PB, BB and lil sis while we've been away. She isn't a blood relative but has shown more unconditional Love and Support towards my family than anyone I know. Some of my blood relations haven't even come by to see my MB the whole time she's been sick, I no longer consider these people family, we just share some DNA. Mrs. Howard, she's family!  

2 weeks ago, a beautiful cousin did throw an early Thanksgiving for those who were going to be away. That meant a great deal to us too. I'm like an elephant, I will never forget the people who have been kind to us during this difficult time and I will never forget the people who were absent. MB and I will never understand why  people we've known for years have been relatively distant. We finally agreed that maybe they were just socially retarded and never learned how to act with compassion.There is no excuse or reason to be completely distant other than you just don't care. One of my cousins lives 2 hours away and still manages to see my MB regularly, another cousin is to shy to come by because she says it makes her sad to see my MB sick but she still shows her support in other ways and lets us know she's there for us. Someone we haven't spoken to in YEARS put together a fundraiser for us and gave us 500 dollars. There are so many ways to help all you have to do is ask and offer. Don't wait for us to ask for help because we are busy researching and looking for things for MB,its always nice when someone just offers, it's even nicer when they just offer to fundraise at work or with their friends. Asking for money is hard for us, we are very proud people but this treatment has taken its toll on our savings. We will never reject any help or support.

When PB(Papa Bear) called, Mama Bear hadn't even heard his voice when she broke into tears. I worried because the stress was making her back hurt. Finally, I had to amp her up and tell her that WE WOULD be doing all those things next year. When she finally regained her composure she began to get ready to go to a Thanksgiving dinner here in Houston. We met a woman here that has gone out of her way to make us feel welcome, her middle name should be compassion because thats all she's shown us. She insisted we go to her families house for dinner.

The simple invitation meant so much, being around a loving caring family made us miss our family a little less. The home cooked meal was excellent and the company was even better. My friends kids are super cute, they are definitely their parents children. When we arrived they ran out to greet us and give us hugs. They were so excited we were coming they cleaned the whole house. Her 7 year old was super attentive and quick to bring us drinks whenever we asked. 

Thank You Monique for teaching me about compassion, being here has changed me, it's made me a better person. Don't worry wacky Mariela is still in full effect but I feel more empathy for people now. I think I'm more sensitive, children are growing on me and the urge to slap old people in the face has subsided. Could this be a Thanksgiving miracle???

I Danced.....

A box full of puppies will put a smile on anyone's face!

After a very stressful day, this is just what I needed....PUPPIES!

A cute cowboy is just icing on the CAKE!
I hope you dance......I did;)

I want to begin by apologizing for my comments in my last post, I shouldn't have reffered to MB's oncologist, at Kaiser, as a "dumb ho", that was wrong. I was just angry and needed to vent. Surprisingly MB was calm when I told her that her doctor was unwilling to go along with the treatment regimen Dr. B had prescribed, she just said, "We'll fight them when we get home". MB fights cancer and Kaiser, she is Wonder Woman!

Last night my new TEXAS BFF, a wonderful woman my age, whom I met in Houston, took me out for a much needed drink. I told her I wanted to meet a cute cowboy and she delivered! She took me to Showdown's Saloon. There, we met Eric, he was incredibly sweet from the beginning. He bought drinks and food all night and behaved like a total gentlemen.

After the Saloon we went to a place called Chula's, where my BFF met up with her Husband. Eric said Chulas was 'hood' but I thought it was cool, kinda like a sports bar. They played all kinds of music, country, hip hop, Mexican music and Adelle! Eric kept taking me out to dance by our table. When we arrived at Chula's I had bright red lipstick, when we left the lipstick was gone. This is how it happenned, everytime we got up to dance he would hold me tighter and tighter, his smell was intoxicating,after a while I just let go and let him glide me across the dance floor.As we danced, he kept telling me how beautiful I was and how lucky he felt to have met me in that smoothe Texas drawl. PEOPLE, I am 30 years old, I know he was/is probably full of shit but in the moment it was a fairy tale so I just kept dancing! When Adelle's "Someone Like You" came on, he started whispering the words in my ear as we danced, suddenly he brushed his lips against my cheek, then my lips then BAM full PDA. It was truly a magical moment.

Later we went with our friends to the best taco truck in town, thats right my cowboy keeps it classy. After that he asked my friend if he could drive me home. I know some of you, are lk, "what!" she went home with a perfect strager!"...No Eric was my friends friend who we happened to run into at the bar. On the way home we just talked and laughed and held hands. When we finally arrived at the hotel he gave me a quick kiss on the lips and that was it. He has text me twice this morning and asked me to be his date to a wedding tomorrow night, if all goes well he may take me to Baton Rouge Louisiana Saturday!;)

Stressful times are when you need to try to enjoy yourself the most. It makes things normal again, gives you something to laugh about, write about, dream about. What's the use in staying home and being depressed...It doesn't solve anything so get your BUT out there, say "fu$# IT" and dance. PS "Fu@# IT" is her new favorite phrase!

Some may judge me for leaving MB alone for a couple hours, but I needed last night to stay sane! MB is stable and has her phone. I do feel bad because I didn't get home until 4 am and she did start to worry. woopsies:(. I wont be doing that to her again. This morning she asked who was texting me, I said my cowboy and she was like, "OH GOD please don't start dating a guy in TX". I told her she only has herself to blame for blessing me with some amazing genes!....It's all her fault!

Wednesday, November 23, 2011


100 dollars a pill, needs to be taken everyday!

My favorite, Afinitor, I call it the Vampire, each pill is wrapped because its damaged by light, ONE pill is 500 dollars and it has to be taken everyday, THIS ONE IS SUCKING THE LIFE OUT OF OUR FINANCES!
PB is the secret weapon developed in Burzynski's lab 4,500 a month for an unlimited supply

I always thought Kaiser was ok but then again I never had a life threatening illness. Not only do they not cover alternative cancer therapies they can't even be counted on to prescribe medications that have already been OK'd by another doctor. Did I mention my PB(Dad) pays 800 dollars a month for this piece of shit insurance company???

Today, I literally wanted to choke a bitch, excuse my language, but I'm pissed off. I had the most unsettling conversation with my Mom's uncologist at Kaiser. She said she felt uncomfortable following Dr. Burzynski's treament plan because it is still experimental. I don't get it, the dumb bitch is ok prescribing Hospice(the program where they send you to die), but she's worried about prescribing pills that could potentially save my Mom's life???? Obviously she's not concerned with my Mom THRIVING, she's just worried about costs.Here MB and I are, doing everything we can, paying out of pocket and the dumb ho not only doesn't help us, she decides to tie a sand bag to our feet. I am so MAD right now!

I forgot to mention that when I emailed the doctor about these very same medications, she at first agreed to prescribe them when she thought we were at MD Anderson, then, when she found out we were at Burzynski's clinic, she changed her mind and suddenly didn't "feel comfortable" prescribing the very same meds she had previously agreed to. I have the emails to prove it!

How on Gods green earth can we keep paying for these meds out of pocket? I'm going to give this dillema to God and have him work it out.

Tuesday, November 22, 2011

Our very first photo shoot....and some MB memories

Mama Bear and I 30 years ago.
I used to get annoyed at my Mom for not baking and reading my bedtime stories to slow. I remember wanting her to do everything that the Beaver's Mom did. I wanted her to be the perfect American TV mom. I know, I used to be stupid.

When this picture was taken, MB would wake up at 4am take me to daycare and go work a full time job, she'd come home and make dinner for my Dad and I and then go to San Jose City College to learn to speak English. This work ethic put me through college and my sister through college. Mrs. Cleaver never had nothhin on MB, I was just too blind to see it.

See you later.....

This pic is just for you ADA SILVA!
I'm not a camera whore, everytime my MB gets a new med, I make her take my picture, it distracts her...I know i'm sneaky;)
Our lovely nurse Brought over a patient who's only been doing treatment 2 months and has already seen a 70 percent decrease in her Tumor Markers!
I know I look like a Tijuana hooker today with the red lipstick, I wear red on gloomy days to make Mom laugh, trust me she always has something to say!

God always sends us Angels, today he sent us Joan to brighten up our spirits!

The staff at Dr. Bs is incredible!....One of our nurses, Amanda, took a liking to us and made sure to bring over Joan, Joan has been fighting stage 4 colon cancer for 5 years, MD Anderson told her there was nothing more they could do so she came to Dr. Bs and is THRIVING! After only 2 months her tumor markers have dropped 70 percent! She said she'd never seen such a drop at MD Anderson,
We've noticed a trend so far, everyone we meet is stage 4,they have been told, by their oncologists, to go home and make the best of the time that they have, they get a kick in the ass and a "See you later...but probably not", by "modern medicine".
Ironically, what Dr. B is doing with his gene targeted therapy, seems a million times more modern and advanced than what we get at home.
I hope that anyone who is battling this horrific disease and is told to go home and die a slow painful death, FIGHT, just keep fighting, keep searching keep loving and never ever ever give up. Never be discouraged by your finances, where there is a will there is a way!


Monday, November 21, 2011


MB and PB their Love is EPIC!
Big Bro and Lil Bro their wacky
Me and Lil Sis we are literally like night and day
Ever since MB got sick our family has pulled together like no other. We know we are stronger together  than apart. PB has been working extra hard to maintain the household since no one is working.

My little sister has offered to get three jobs to help pay the mortgage. Lil Bro is 17 and is just trying to stay out of trouble while keeping the house clean and the lawn cut, Val is our honorary Big Bro, he came to live with us after his parents passed away when he was only 12. Val brings his son to the house and keeps my Mom cheerful with his wild antics.

Our extended family calls, writes, comes over and brings food on a daily basis. These are the people my MB fights for, with and because of. Even though this battle is hard we take comfort in the fact that we are not fighting alone. We are the 300.;)

We continue to be blessed with kindness;)

Keeping ourselves entertained as we wait for the doctor
Cancer won't take away her beauty, Mama Bear has always been a knockout!
Her annoying Baby Bear with the hot pink camera keeps making her pose;)
I always tell my Mom not to worry about money but when she keeps getting prescriptions for 500 dollar pills that she has to take EVERYDAY its kind of hard. Today, we met a couple from CA. They gave us some great tips on how to get discounts on prescriptions.

Everyone has been praying for us and I said it before and I'll say it again your prayers our guiding our path here in Texas. We keep running into the most incredible people. Today, someone invited us to their house for Thanksgiving dinner. I can't tell you who because technically they are not allowed to invite us  but she said she felt a connection with Me and Mama Bear from day one. When she invited us Mama Bear cried. She was so filled with emotion at the kindness of a relative stranger. I was excited, the thought of eating Thanksgiving dinner away from our family at Denny's was really starting to depress me.

So far MB has been feeling good, she's been holding up nicely and responding well to the new meds. She is such a trooper, taking up to 6 pills every two hours. The pills are the doctors special concoction, they refer to them as PB but they really are the antineoplastons in pill form. The doctor has cleverly found a way around the FDA by prescribing them for off label uses. Sneaky doctor;) She has also  started taking one Votrient and one Affinitor a day along with an injection used to prevent any more bone destruction where her tumor is on her vertebrae. The Votrient and Affinitor are supposed to block certain receptors found in her blood that are allowing the tumors to grow. Soon she will be put on Herceptin which will block the high amounts of her 2 receptors found in her blood.

When I think of the extensive testing MB has undergone here in Houston to have a personalized state of the art treatment plan just for her based on the receptors found in her blood,  I am shocked and disgusted at the shortcuts places like Kaiser and Stanford take. Why don't they do extra tests to see what is going on in her body at a genetic level and design specific treatment plans. There are so many drugs out there that can help all types of cancer but they are just used for one type because thats all they are approved for. No wonder people with rare cancers like MB's are just told to go home and die. To bad Uterine Leiomyosarcoma isn't as fashionable as Breast Cancer, maybe then we'd have more Drugs, Oh well, I guess we will continue to work with doctors with vision and forsight enought to prescribe off label meds to treat this rare disease.

MB's story isn't over. I don't know how it will end and neither does she. I just know in my heart we made the right decision coming here. One of our new friends told us that her sister died a few months ago while she was still contemplating seeing Dr. B. Her fear held her back and she died. I'm not saying that this treatment will save my MB's life, no one can know that for sure, all i'm saying is that we gave it 110 percent and did everything we could to save her. We left fear, doubt and thriftyness at the door and took a shot. You know what they say you have to bet big to win big. This is definitely the biggest bet of our lives but we're willing to take the risks;)

Sunday, November 20, 2011

Mother + Daughter= BFFs

Best Brunch spot in Houston!...I know, cause I yelped it;)

My main numero uno roll dog!

You are my sunshine my only sunshine, you make me happy when skies are gray, please God don't take my Sunshine away!
Anyday that my Mama Bear is feeling good enough to go out is a GREAT day. Woke up to preacher Joel Osten, He was talking about "I am". The sermon really hit home. He says when you say things like I am stupid, I am ugly you draw those things to to you, so when you say, I am beautiful, I am smart, I am healthy you draw that to you. All day Ive been tellin my Mom she is healthy, and I hear her whisper to herself I am healthy!

After that, we watched Friends, for some reason my Mom loves Friends, its her favorite show! I like watching TV with my Mom because she has this funny habit of yelling at the TV, whenever anything bad is going to happen to a character in the movie she always yells out, "Oh no, don't do drugs!, or "Oh no don't sleep with that guy!". My baldy is hysterical!

Later in the day, I yelped good Brunch spots and told Mama Bear to put her dress on, cause we are going out!

We decided to give Baba Yega a shot, it had great reviews and when we got there we saw why. The place is a gem. The decor is reminiscent of old New Orleans, my Mom said it reminded her of slavery. I think what she meant was that it was very southern. The food was excellent and the company was even better. Mom and I had a lovely afternoon just talking and laughing. She told me that when she's better she wants to go on a cruise. She said, she used to be scared of boats but now she's not scared of anything.

Later in the day, we bickered like always, she's always asking me to do random stuff and I'm always reminding her that she has two legs and two fully functional arms and she can do stuff for herself. I'm not evil, I just don't want her to get this, I'm sick mindset, I want her to still feel capable of doing things for herself. Who knows, maybe I am just a jerk, but a jerk who loves her more than anything, so there!

Saturday, November 19, 2011

Embracing Change

Breaking Dawn at the Break of Dawn in Houston, I couldn't believe there were this many people at 10am!

Our Texas whip!..what what

Mom picking out fresh organic veggies at Whole Foods in Houston

It finally hit me, my Mom is sick. I can't push her to the limits anymore. I was always so used to her moving at my pace. I'm fast, I talk fast, I walk fast, I want things done fast. My Mom used to be like that too but ever since she got sick she does things a lot slower if at all.

I wanted to go to the movies today but she couldn't go because it physically hurts her to sit for too long because of the Tumor in her back. I went alone and when I came back I let her know how it went. I felt bad because I knew she would have liked it. She also walks slower because of the tenderness of the tumors on her liver and her abdomen, a lot slower. A bump on the road is painful for her so I have to be careful when I drive that its not to bumpy. 

When we made it to the register at Whole Foods she had to sit down because her back started hurting. Her world has changed so much and I really don't know how she does it. I am constantly in awe of her strength.

My teacher text me today, it looks like he's leaving on Tuesday. It sucks because I thought he could be my hang out buddy, somedays I get bored being cooped up in the hotel but it's only two more weeks. Maybe i'll make some new friends next week. Here's hoping. Mom's attitude was great today and it has definitely been a better day emotionally. When my Mom gets sad it's like the lights get turned off so it's important for me to keep her happy. She's my Sunshine, My Mama Bear;)

Laughter through tears is my favorite emotion;)

It's hard to see my Mom cry because she is normally so strong. Last night, I could just see it on her face that something was wrong. She had been feeling back pain all day, then in the evening she started coughing. These seemingly harmless symptoms are actually more serious with her because she has a tumor on her spine so the back pain is due to the tumor and tumors on her lungs and if her cough gets worse its a sign her lung tumors are getting larger.

When I looked over at her I could see she was thinking to much so I told her to stop worrying. Thats when she just started crying and telling me that maybe her cancer was just too advanced and it was too late for her. I reminded her of the patients we have seen at the clinic that come in in wheelchairs and told her we have to keep fighting. Then, I asked her if she just felt lik crying that maybe we could cry together. So we did, we cried for a good 15 minutes, we let all the fears and worries out. After that we prayed washed our faces and went right to sleep.

This morning she said she slept well and that the crying actually helped her fall asleep faster. Having cancer is like riding a rollercoaster of emotions, somedays you have really good days and some days you have really bad. I applaud my Mom for her strength to keep riding, most would have given up by now. Today will be a better day I can feel it!

Friday, November 18, 2011

Friday Night in Houston

I wish I was here under other circumstances, there are so many cowboys ready to get taken advantage of! It's ok when my Mom gets better we will be back and paint the town RED!

Just one of those days that a girl goes through....

Mom sleeping with Don King, thats what I call her wig;)
Today was kinda blah, we just had a doctor’s appointment.  Mom was given a new medication and a new billL. Her cough has come back which freaks me out but I think it’s only because she’s been worrying about her financials. I try to tell her not to worry but I know it can’t be easy dropping thousands of dollars a day.
Instead of raising money for huge organizations that only sponsor big pharmaceutical clinical trials why can’t there be organizations just for patients to pay directly for whatever therapy they want. That’s why I never donate to the American Cancer Society or any other BS cancer organization because most of the money doesn’t go to the patients. Trust me I’ve worked there, I know where the cash goes and it’s BULLSHIT!
Unfortunately in America it’s more cost effective for people to die. No one really cares until it’s your Mom, Dad, Sister or Brother in trouble. I know I didn’t.
Today for dinner I just ate alone and let Mom rest. It was nice to get away for a second and be depressed. I try to stay positive but some days you just have to give in and have a good cry fest with yourself and look pouty. I text my teacher, he hasn’t text me back. He’s probably busy caring for his sister and 3 year old nephew. As much as I try to turn this into a mini-vacate its not, It’s doctor’s appointments and sickness. Our New Zealand friends left, so I can’t hang out with them and understandably Mom only has the energy for doctor’s appointments.  Tomorrow will be better!

Thursday, November 17, 2011

Just an Extraordinarily ordinary Day;)

Mom thinks EVERYONE should read my Blog because I work so hard on it!...OH MOM;)

Dr. B’s practice is unique because they attack cancer from all sides, not only do you get (Gene Targeted) FDA approved meds and Dr. B’s special medicines you also get an hour long, one on one appointment with a licensed nutritionist.
I learned so many great things in that hour. The nutritionist was telling us that 70 percent of cancers can be prevented with nutrition alone. WOW. Basically people with cancer should avoid all red meat, eat 5 small meals with healthy proteins and complex carbs, also 1/3 cup of nuts is recommended and a wheat grass shot every morning. There is obviously more to it but those are the basics.
Today was one of those simple days, no surprises or unexpected encounters, just a nice lunch with Mom, followed by her doctor’s appointment. Days like these make me feel very lucky to still have my Mom and joke with her, call her annoying and baldy. I’m not evil, that’s how we play. Don’t worry; she throws it right back at me. During Lunch, she decided to remind me that my Ex DUMPED me and that I cried for him for two years. She tells me i'm dirty, annoying,lazy and cute.Thanks for keeping it real Mom!
Many Cancer Survivors say they are thankful for having had the disease. I get it, being terminally ill and having a terminally ill loved one forces you to savor every single second that you spend with them. Every laugh, word, hug, smile becomes so much more intense. Every fiber of my being feels like being here is right. From the moment we got here everything fell into place. Thank You for your prayers, I feel and see them working all day every day.