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"

Monday, November 21, 2011

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;)

No comments:

Post a Comment