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, 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.

2 comments:

  1. I will never ever go to Kaiser for treatment! Nor will I advise any of my friends or family to go to Kaiser!!! They are an abomination and the sooner people hear about this the sooner they can choose another insurance carrier! Shame on you Kaiser!!!

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  2. Good choice, the problem with Kaiser is they have no one to bill but themselves so they cut corners and costs at the patients expense. I encourage all my friends who are getting out of college and getting new jobs to opt for the PPOs they are a little more expensive but at least they broaden your network and choice of doctors.

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