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"

Tuesday, January 31, 2012

You gotta have faith, faith, faith!

Living with Cancer is like being trapped on a deserted island waiting to be rescued. You can't really plan anything in advance because you don't know where your family will be. Your constantly in a state of emotional Limbo, never knowing when and how you will get rescued, even worse, what if your never rescued and you die waiting? These thoughts become so overwhelming that eventually someone in the group loses it and the rest of the castaways have to tie them to a tree so they don't hurt themselves or others.

Last night my Dad (PB papa bear) lost it, he kept telling me MB was getting worse and we needed to face reality blah blah blah. One negative Nancy in our house is like Cancer, the thoughts spread and the moral drops. In our situation, it is very important that the moral stays high at all times. It's the only way any of us will come out alive.

It's times like these where the power of FAITH kicks in. When the ship is sinking and you manage to make it out alive you have to have FAITH that things will get better. PB and all of us must remember to look past our current situation. Yes, MB is not very mobile, yes her legs are swollen, yes she is stage 4 BUT her chemo meds cause the swelling and when she's done taking them the swelling WILL go away, her cough is gone, Her actual disease seems to be at a stand still. The fact that she is still alive with tumors in her liver, lung, bowel and spine is miraculous to say the least. Her faith, our faith your faith is keeping her alive.

Having Faith is one of the hardest things I've ever had to do. It's incredibly difficult to look beyond the reality of now. It's hard to believe in something that completely contradicts science. My greatest comfort and motivator is that MB has already beat the odds by staying alive a year after projected. When MB and I were stressed about money in TX, I told her, "Hey, don't worry about the money, it will come, lets just take it a day at a time" She would reply, "But, we have to be realistic, I can't afford to pay for these medicines forever" My response was always, "What about God? your losing your faith, put your religion into practice woman!". She would just laugh and stop complaining. What happened no more than a month later??? A 10,000 dollar check just showed up at our door. See, Faith, God and a rich good Samaritan have kept us going. Moral of the story, I'm always right, and never let yourself be held back by what's "realistic".

When I see her sick and tired, I just remind myself that the healing process takes time. God is big and he is working on our miracle. I know it. I just visualize her protesting at Kaiser. That will be our best revenge, her protesting at the place that tried to kill her!

Tuesday, January 24, 2012

The wind beneath my wings

Not only is she kind beyond belief, she's also really really HOT!

Everyone's always telling me how proud they are of me. I always feel a little weird when I hear that. I just think that what I do for MB is what any daughter would do for their Mom. Today, I was reading an excerpt from Kris Jenner, Kim Ks mom, from her new book, "How to be a sluttacious superficial whore and raise other sluttacious superficial whores" j/k (relax, I didn't buy the book, it was in people magazine). She said that when she had her facelift Kim slept on the floor of her hospital room all night and never left her side. That automatically reminded me of the time MB was hospitalized when she was hemorraging. I wanted to sleep in the chair next to her all night, I just didn't want to leave. There is something about the bond between a mother and daughter that is sooo special that even  a superficial reality star can't avoid it.

I also feel guilty when people tell me I'm doing a great job. Trust me, I could be better. Somedays, I get so angry and annoyed that I take it out on MB and make her feel bad. At times, I secretly resent her for what we are going through. That doesn't last for long but they are feelings that I have, they are real, they are raw and they are not always pretty.

The true rockstar is my little sister. Her patience astounds me. She works part-time, comes home, helps out around the house and even runs errands for MB when MB gets tired of asking me to do stuff for her. On the weekends, she stays home and takes over MB duties while I go out with my friends to de-stress. My lil sis is an Angel, she really is. Just last night, she heard MB cough at 2am, she woke up and brought her cough syrup and offered to make her tea. She would. My sis is quiet, never asks for or expects recognition, she's not an attention whore like me and because of that sometimes I don't think she gets the credit she deserves. If anyone deserves to be told they are doing a great job its her. I still harbor a lot of anger, frustration and fear that I unfortunately direct towards my family and she teaches me to stay calm and carry on. If it wasn't for her I'd probably already beat the crap out of my little brother and maybe run away from home. She is definitely the calm to my storm and without her none of this would be possible. Love You Jeannette!

This ones for you boo!

Sunday, January 22, 2012

I'm Numb

Lately, I notice that MB's Cancer affects me less. I find myself comforting others when they try to comfort me. Just the other day, my Grandma was crying and I was completely unaffected, I just patted her back and said, "Yah yah it will be ok, chill, go home, now I have to finish making dinner."

Today, I rubbed lotion on MBs back and saw the toll cancer has taken on her body. She looks like one of those starving kids in Africa. Her arms are skin and bone, her belly is bloated because of the tumors, her skin is thin because of the meds, her hair is gone and her legs are swollen.  When she takes off her shirt I'm shocked but unaffected, I don't cry, I don't feel like crying, I just rub lotion on her back and demand that God start doing something!

Lately MB sits in her chair in silence, I ask her questions and she doesn't respond. She's checked out. Her body is here but her mind is elsewhere and its not good. She's numb too. It's weeks like these that I pray God take her. She prays God take her too. I tell her to hang in there and she says she tries but that its getting harder.

I know we all want her around but it's selfish of us to force her to live like this. At this point all she can do is simple things around the house and thats it. She only goes to doctors appointments and the walk from the car to the office really wears her out.

I pray for a cure with every ounce in my being but if God doesn't have that in mind, than I pray that he relieve her from this pain NOW.

Tuesday, January 17, 2012

God has his way of changing us......

MB now, no hair, inner beauty shining!
MB 1 year ago, at our Superbowl party

As I sit and talk with MB, the funniest things come out of her mouth. She remembers how she would obsess over her looks, spending up to 3 hours a day getting ready for a party. Now, she says she just wants to feel better and doesn't even care how she looks.

God has a way of changing us without us knowing it. I won't lie, I like looking good, but I no longer obsess over it. After I shower, I take a good look at myself in the mirror and even though what I see isn't perfect, I thank God for what I have. I thank him for all my working parts and promise him that I'll try to be healthier so my jiggly parts don't get too jiggly.

I see girls worry about the right clothes, the right boobs, the right style. Spending hundreds if not thousands of dollars on "stuff" and I laugh. I don't judge. Everyone is entitled to get whatever they need to feel good but if "stuff" makes you feel good than your playing the game of life wrong. You won't be able to take the "stuff" with you when you die.

Yesterday, my friend and I saw a woman at the mall. She had fake boobs, fake blonde hair, a nose job, fake lips and some work done on her face. I looked at my friend and asked him, "What do you think that says about her insides?" he joked, "Their probably fake too!"

Don't get me wrong, taking care of yourself is important, but be the best YOU you can be. I promise, its been my experience that people are drawn to someone who is genuine,real, kind, smart and thoughtful. Big Boobs with a bad attitude will only get you so far, trust me I Know! I used to be a big tittied brat when I lived in LA.

MB's cancer hasn't made me less bratty, it's just made me more thoughtful and kind. I try to be more patient but I'm still working on that. My whole family has changed. Grumpy PB tries not to be so grumpy. When he feels the need to get a little rowdy he goes outside and calms down first. He's never done that before. Usually he just yells until we all leave the room.

Cancer is a bad ass Bitch, but like all bad ass bitches she ends up teaching you something whether you liked it or not. Your physical body may suffer but your spirit will grow and evolve past it. Like MB said last night, "God has entrusted us (my family) with the greatest challenge of all, but through patience, communication and Love we will get through it and make him proud".

Tuesday, January 10, 2012

Taliboo Update

Everyone wants to know what happened to Taliboo. Well Taliboo and I had a fight the night of my birthday dinner. I may have been drunk, I may have said things I shouldn't have said, but the point is that after we had that fight I haven't heard from him. Egh, you win some you lose some. Men are like busses, a new one comes around every fifteen minutes.

I've been dating in San Jose but most of the guys I meet are blah to say the least. Where did the real men go? I've been talking to this guy, he's a software engineer and he keeps asking me to go on hikes or hang out at his place and we haven't even been on a second date. I'm sorry but this screams Cheap-O and Creep-O. New rule, you can't ask a girl to hang out at your apartment until you've been on AT LEAST 3 dates minimum. Then there's the DJ. The DJ likes to invite me to watch him play on Monday nights. Strrike 1, he invites me to "the studio" to watch him produce, Strike 2, and he has a GF, Strike 3! What part of me screams groupie whore!?!? Then there's the 23 year old, hes good for stress relief and thats about it.

Yazzy Fresh sent my pic to a guy she thought I might hit it off with, he replied and was very interested in going on a date, only problem was he had a girlfriend. I'm so over men. I give up. I'm perfectly happy seeing a 23 year old  once a week and living my life free of the drama and stress that comes from dealing with an actual man. At the end of the day guy's are only good for one thing and when your done with that, its time to send them packing. Think what you will, I don't care, I prefer to be honest than live a lie with a man I can barely stand. I have enough friends and family to go out with and talk to. I'm Good!

Don't get me wrong, if a REAL MAN came my way, I would definitely try to make it work. But those have been few and far between. I know they exist, it's just been a while since I've met one.

Monday, January 9, 2012

Thank YOU

Together we all are stronger!
I spend a lot of time bitching about the people that make our lives miserable, so I'm going to take a time out and send out a big, huge, THANK YOU.

Thank You to all the family, friends and even strangers who take time out of their day to send us an uplifting message, bring us food, give us money, share a book. Today, one of my best friends sent me the most amazing message. She lost her mother when she was 23 and has some amazing insight into what I'm going through, here is a piece of what she wrote that made me cry and feel better all at the same time, from my SexyVbear, SVB for short,

" mom won't be around to see who I marry (to approve or not), to help me with my wedding or my first pregnancy or see her grandchildren.  but she'll still be there, she's always a part of me, forever and even if she's not physically there, i know her love is.  i know that no matter who i marry or how many kids i have (or even how i have them) she'll have loved them all because that's the person that she was.

that's one of the greatest gifts ever our mom's have given us is love.  it won't matter when she passes, her love will always live on, whether mom's pass away when you're 23 or when you're 73."

I love having smart friends, best decision I've ever made is surround myself with grounded, smart, mature people with good jobs! SVB also bought me lunch today, score! All kidding aside, having good friends and family is key to getting through rough patches. I've had friends protest with me, go to doctors appointments with me, listen to me cry over the phone. My BFF Ada, always answers when I call or calls back within seconds because she knows I need to cry or vent, and she's one of the few people I feel comfortable being a little bitch with.
My parents have also made some great friends throughout the years. My little brother's Godmother is amazing! She brings us food once a week and today she's like, "Can I write you a check?". My first response to that is always, "HELL YAH!". MB is proud and would like to spend her entire life savings before she continues to take money. She Would. That's why people Love her. Because she's not needy or vulnerable even when she needs to be. I tell my parents not to be proud but their old school.

My dad's friends brought food yesterday and it was AMAZING too. I personally like it when people bring food because then I don't have to cook. Like today, I took MB to her doctor's appointment and wasn't stressed about rushing home and making dinner for the family because it was already done. So Thank You to all of you who make our lives easier with your small and big acts of kindness. We Love and appreciate it!

Is this normal?

Lately, I've been a bit depressing.Sorry, I can't help it, MB has cancer, it's not always a party at our house. The last few nights I've lost sleep because I can hear her coughing, her room is next to mine. She coughs until 1am and it's hard to stay optimistic. Thoughts of her dying float through my mind. I try not to be negative but I see her in more pain and that damn cough won't go away.

I see my cousins, friends and other peers getting married and having kids and my siblings and I are forced to deal with sickness on a daily basis, there's no escaping it. Everytime, someone announces they are pregnant or getting married I'm happy for them but part of me resents it. Why do they get to be so happy? It's weird, you want to be happy too but mostly you wonder will MB be around when I get married? Will she be around when I have kids? Other people's milestones force me to think about MB. I know it's unrealistic for our family and friends to put their lives on hold for us and we wouldn't want them too but it's hard to share in their joy the way you want to when your constantly in unbearable pain. Their joy is like turning on the lights when you've been sitting in darkness, it takes a while for your eyes to adjust and its not completely pleasant.

I wonder if MB wonder's if she'll be around to see her first grandchild, or to see one of her kids get married. Today, she told me she doesn't know how much longer she can go. I'm 30 I should be planning a wedding or a baby shower not thinking about how I would deal with MB's death.

 I constantly have to remind myself that my life isn't so bad. There are poor kids in Africa who's parents were brutally killed in wars. There are people who lose children in horrible accidents. There is someone feeling shitier than me right now but that still doesn't take away the fear and pain I feel in my heart at the thought of losing the person I LOVE MOST on the planet.

Friday, January 6, 2012


How dare Kaiser rob her of a second chance, what did sweet MB ever do to them? All she ever did was pay her CO-PAY of a 1,000.00 a month religiously just so they could slam the door in her face when she really needed care!!!

A typical morning in the Vargas household consists of MB on the phone with one of her favorite cousins laughing and having a grand old time. I, on the other hand, am in my room, on hold, with yet another piece of crap insurance company giving me the runaround. I'm sending emails, faxes picking up scans dropping off scans, my day is consumed by red tape and today I just couldn't take it anymore. I am enveloped in sadness and rage. Kaiser keeps doing nothing for MB. They have wasted a month and a half of our precious time running us around in circles just to continue to say no. I am MB's Cancierge, I make her Cancer experience run as smooothly as possible. I deal with the red tape and the stress so that all she has to focus on is getting better.

Being a Cancierge is very stressful and I'm at the point where I just want to run as fast as I can away from home. Of course I'd never leave MB, but I do feel like I need to get away for fear that my head might explode. Dealing with Kaiser and their doctors is laughable. MB's current oncologist, Dr. Jhatakia is a joke, she's not a doctor, she's a puppet. Kaiser tells her what to say, how to act and what to do or not do. When MB first came back from TX she presented Jhatakia with the treatment plan the Oncologist gave her in Houston. Dr. Jhatakia barely skimmed the plan and said no. After involving the VP of Kaiser in our plight, Jhatakia finally agreed to look at the plan more closely and call the doctors in TX to see why they had given MB Avastin and why they thought it was helpful. WOW, it only took a month and a meeting with lawyers for her to start acting with more common sense.She still rejected the plan of course, but at least this time she pretended to do her job a little more believably. Here is the thing that bugs the crap out of me. Why, why did she dismiss us so easily when we first presented the plan? Who was pulling her strings then? She walked into the room knowing she was going to say no, did she speak to the doctors in Houston back then? NO. Why now all of a sudden?

Jhatakia, you are a disgrace to the medical community. You should lose your medical lisence for being such a quack. I'm embarrased to say you are a fellow Bruin, can't believe UCLA taught such a spineless person like you to practice medicine.Remember that Oath you took, "First do no harm". Well by wasting MB's time you are harming her, by not giving her the chemo she wants and needs, you are harming her, by not being open minded you are harming her. By the grace of God MB is still stable but no thanks to Kaiser or Jhatakia. Doctors in TX are keeping her alive despite your best efforts to kill her. I hope when you read this your feelings are hurt, I hope you cry yourself to sleep. Maybe then you will begin to feel a fraction of the frustration and sadness we have to deal with every single day because of you. MB and I are tired of dealing with you and you can consider this our break up letter. MB will get better no thanks to you or Kaiser. MBs doctor's in TX called today and urged us to start chemo again ASAP, they said MB has a very narrow window of time to get it done before it's too late and her body is to weak to take it. WOW, Jhatakia has purposefuly been wasting our time, she's not retarded, or maybe she is, she must know about this window but never bothered to tell us. Frankly, I'm not surprised.

Dealing with Jhatakia and Kaiser has been a living hell to say the least. I have literally lost sleep because of them and my heart BREAKS everytime I have to tell MB they refuse to give her the treatment she wants. MB is so fucken cute and sweet, how dare they play with her life. how dare they take away an oppurtunity for her to get better. YOU ARE A DISGUSTING organization, your filthy and gross and I hate you for what you are putting my sweet gentle mother through. Kaiser, the true definition of MONSTER!

I know a Kaiser rep is reading this, I want to let you know that it's probably cheaper for you to authorize the treatment MB wants, because if anything ever happens to her I will have a lot of free time on my hands to organize protests and generate more media attention and more negative publicity. I guess you wanna battle WMV and Yazzy Fresh, well thats just what you're going to get. I tried to play nice. Now Its time to exercise my legal right to protest in front of your hospital indefinitely. I'm also thinking of all those reporters who can't wait to do a follow up story on MB's progress, they will all want to know what Kaiser is doing.

For those of you who don't know what we are fighting for. All MB wants is Avastin to be given with her chemo and an injection of XGEVA. She was already given both FDA approved medicines in TX and did well. Avastin works by interfering with the process of angiogenesis by targeting and inhibiting human vascular endothelial growth factor (VEGF).  VEGF is a cytokine (a small protein released by cells that have specific effects on the behavior of cells) which when it interacts with its receptors in the cell leads to new blood vessel formation or angiogenesis. MB's blood tests and caris test showed she had high levels of VEGF because her tumors are getting their own blood supply. Avastin would suppress VEGF in essence start cutting off her tumors blood supply.This information was shared with Jhatakia and she still says NO.Kaiser's reason's for rejecting them are laughable, since MB has already had the drugs with very little side effects and is stage 4 so she really has nothing to lose. Dr. Jhatakia has no problem prescribing hospice(the place they send you to die) but Avastin and XGEVA she worries may be too toxic. You guys are a joke.

I won't apologize for this post or my anger. I watch a weakened MB and it breaks my heart because she fights so hard to stay alive, I fight tirelessly for the woman I love most on this planet just to get nowhere. I have every right to be angry. I am the one dealing with all the suffering and all they have two do is approve 2 simple medications and give us some hope. I guess for them it's easier for my family to be tortured on a daily basis because its not their mom, wife, sister. She's just a patient who is no longer cost effective. If you feel our grief or outrage feel free to share this post on your FB, lets bring awareness to the public about this so-called "non-profit" who not only misdiagnosed my Mother for over a year, letting her disease progress.They also continue to  mentaly torture her and our entire family while she fights their beauracratic system to stay alive.

Wednesday, January 4, 2012

The Big C

Creme Brulee with a side of tears
The only thing cancer patients should ever have to focus on is getting better, thats the only thing. Kaiser called today, they won't approve the chemo treatment MB needs to keep her going. Tomorrow morning we have an "expedited review". It's the lame process Kaiser has to appeal a decision. They will have two of those, waste more time and still say no. They will say there is not enough evidence supporting an FDA approved medication that suppresses angiogenises(angiogenises is the tumors blood supply, this medication cuts off its supply). The medicine is Avastin, google it, it's FDA approved and Kaiser refuses to give it to MB. How do I know Kaiser will continue to reject it? Well, this is the same process that I had to go through when I was fighting for a referral to Stanford for MB to do a clinical trial last year. Maybe when MB is dead they'll approve Avastin.

While Kaiser continues to waste MB's precious time, MB sits at home with a cough that seems to get worse, her mobility is limited due to soreness caused by tumors that continue to grow because no one told them to take a break while a life or death decision was being tossed around slowly by her insurance carrier. In the meantime, I file paperwork, have telephone meetings and run all over town trying to find a solution to MB's problem. Debating with Kaiser on MB's behalf is a full time job. I often wonder what it would be like for MB without me, what do other Cancer patients who want to keep fighting the "system" do when they are weakened from chemo and cancer. I'm getting tired of all this paper pushing bearacracy and I'm HEALTHY, what do the poor sick people do? It enrages me to know other people are going through this right now and they don't have a WMV(wild Mariela Vargas) as their advocate. Do they just die thinking that more could have been done if some paper pusher at Kaiser had seen more than just a number? It's truly sickening!

I wish Irene and all those people who keep denying MB's shot at life would have been here for our New Years Eve dinner. I wish they would have sat at our table. I wish they would have heard MB and PB reminisce about the days when they met. I wish they would have seen my little sister leave the table and cry her eyes out in the bathroom before returning to the table with swollen eyes, trying to pretend everything was ok, before dessert. If they had seen MB and PB embrace in tears as they comforted eachother during the most difficult time of their lives, maybe then, they wouldn't make an already unbearable situation absolutely hellish.  I wish they would see MB through our eyes, as a human being, a Mother, Wife, Sister, Daughter and not a deficit in their end of the year profits. I wish.