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!

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.



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!

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 business...lol. 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.

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!...lol






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:)