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"

Friday, January 6, 2012

Cancierge


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.

7 comments:

  1. Im cancelling kaiser in February.

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  2. It is all about money. The health care industry as a whole is disgusting. Here we live in the United States...one of the most advanced, civilized nations in the world yet our health care system is ranked among the lowest. Pharmaceutical companies and insuance organizations are making billions while many patients are dying or receiving inadequate care. Doctors forget why they got in the business of medicine in the first place. Patients come last. MONEY comes first. I used to work for a medical group. I paid those doctors. I know how much they make..all of the great benefits they have...bonuses...it is truly disgusting.

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  3. Yeah, best decision you'll ever make,Kaiser is great at mass dispensing cold meds but you can't count on them when you actually get really sick.

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  4. I wonder what bonus Jhatakia is getting for cutting MB off? There should be laws against that!

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  5. As Izadé and I read this TOGETHER (she is an 8 year old!) we cried because we can't believe this. I'm so sorry that you and your family have to go through this. We love you guys tons. Eff KAISER!!!! Again, I'm so proud of my company, Chase has nothing to do with this ugly organization. We love you!

    -Ada & Izadé

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  6. Good Morning M&M's

    It's been a while since I have visited and I apologize!! I am OUTRAGED at that BIG ASS ORGANIZATION that is "Useless as Titts on a BULL"!! I was a Kaiser patient up until December 31st 2011. I now am Uninsured, "same thing right"? We paid $500 a month for that stupid medical coverage and never even used it!! I wonder how many other people are like us……giving KAISER countless premiums monthly without any CLAIMS being submitted or any visits to them……one would think that perhaps they could use that surplus money (since we didn't) to authorize those who NEED something so money would not be an issues in ones treatment!!!!! I say that you need to go ABOVE IRENE or whatever her Damn name was….remember as I always say " The Squeaky Wheel gets the OIL"!! There is no such thing as BAD PUBLICITY - they are getting publicity as a result of this and I hope and pray that others feel your pain and frustration as I do and either CANCEL or SWITCH Health Care Providers as this is NOT what KAISER IS…….They should be considered "THE HOSPICE" since Kaiser Kills…….we might as well call them the "KKK" !! "Kaiser Kills Klub" !!! Sorry to be so BLUNT but apparently thats their own language. I hate the term "KKK" because of what it stood for years ago and probably is still alive somewhere but that is what Kaiser reminds me of and It's a suiting analogy for what MB is having to deal with there!!!!! Inhumane is the Word of the Day!! How can that organization be so cruel and INHUMANE as to DENY someone a drug that has already been prescribed and USED with no TOXIC effects…….Political Bullshit BUREAUCRACY thats how!!!!! I am ASHAMED of KAISER and their Treatment or Lack thereof of MB Vargas…….Papabear pays his Premium each month of over $800 and to be denied anything Medically - show me where it is written that "certain life saving drugs are not covered" If one is Terminal or Stage 4 - shouldn't they be the ones deciding what they will and wont put into their bodies and not the Doctors……I feel sorry for them if anything happens to MB in this Window of Opportunity so precious and vital in MB recovery because Lawyers tend to GET what the patients need at even a HIGHER COST THAN the TREATMENT would be!! So, have they even mentioned a release of liability form that MB could sign to allow them to give her the DRUGS THEY don't think are good for her??? Perhaps that will release them and then they will agree??? I am sure you have thought of everything Mariela but I am just thinking outloud as I too am FURIOUS at this Political Bureaucratic TUG OF WAR with MB LIFE !!!!!!!! ANGRY AT THIS "FUCKERY" AS MY FRIEND ADA WOULD SAY !! PLEASE CONTINUE TO STORM THEIR SIDEWALKS SO THAT MB CAN PERSEVERE !!
    -stepping down from soap box now and will share this BLOG on my FB page again sending it around the world…….let's make a difference!!!
    Disclaimer
    *I meant no Disrespect to anyone but KAISER in using the term (*KKK*
    (KAISER KILLS KLUB)

    With Love and Respect to the M&M's Always……
    -Teresa

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  7. KAISER.....GIVE MB THE MEDICATION!!! WHAT DOES KAISER HAVE TO LOSE.

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