About Me

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This blog really isn't designed to be about ME, however I am willing to share my life with you so that you can gain knowledge about living with cancer, the importance of continued research in cancer fighting drugs, and how the FDA's decisions on releasing or pulling a drug from cancer patients can greatly impact many lives. While my cancer is advanced breast cancer, I am fighting for all cancers, and actually life in general. My life has been directly affected by many other cancers as family members, friends and chemo buddies have died from various cancers. Each one of these people have shaped my life and I am fighting to honor their fight, and to continue fighting for all of us touched by this horible disease in some way. Most of all, I'm fighting for the right of my 11 year old daughter to continue having a healthy mother, and for my Husband and Mother to keep them from the pain and torment that comes from seeing a loved one die from cancer. The FIGHT IS ON!! Please join me!!!

Sunday, January 30, 2011

One More Day

Have you ever wished you could have just one more day with someone special that you have lost?  What would you say, where would you go, what would you do? 
My dad is the closest person to me that I lost, and in my mind, he was bigger than life.  It didn't seem possible for him to leave this world. 
As long as I can remember, my dad was always a BIG thinker.  Nothing was to large for him to take on...in fact, the greater the challenge and grander he could make it, the better!   During my elementary school days, I grew up on North Kingshighway just a short walk from Lee Hunter Elementary School where I attended first through fifth grades.  My two sisters, brother and I all walked to school most of the time.  I'll never forget this one particular afternoon walking home from school and seeing what I saw when I got to the corner of North Kingshigway and Hunter.  It was like any other afternoon of my first grade year, but everything changed when I got to that corner.  Glancing over towards my house, I saw huge cranes in my yard, one with a REAL SHINY RED CABOOSE suspended in the air from the cable of the crane.  I can only imagine what my expression may have been, but I know what I felt inside.  My heart swelled up, my mind was happier than a three year old in a candy shop.  Then my little first grade thoughts were..."Wow, my daddy can make anything happen, he can do anything!"
The caboose became a staple of our family and home.  The hours we spent playing in there could not be counted.  That red caboose took us so many places and made for endless hours of entertaining imaginative play.  We climbed all over the inside and out, pretended to drive it, had picnics inside, and even spent the night inside.  I'm not sure how my dad acquired that caboose, I need to find out, but I'm sure when he saw it and knew he had the opportunity to own it, it was a closed deal.  He and I are a lot alike in our spontaneous big thinking.  He probably envisioned that red caboose in his large yard, and thought wow, that would be cool to have in my yard...yeah... he would think...I can do this, just move it to Missouri and have it set right down in my yard!   That was my dad.  Big thinker, nothing impossible... if he could think it, he could do it!  I'm sure at the time he didn't realize that he would be bringing to life the best childhood memories a kid could ever have by bringing that caboose home, but that's exactly what he did!!
So, back to spending one more day with someone.  I would spend mine with my dad.  Maybe take him on an all day train ride sitting beside a window in a train that would have the best ever steak dinners.  I would sit across from him as we would eat the best meal ever, and I would tell him how special he made my life.  I would let him know that he was the greatest man I ever knew and that his influence on me has been the greatest gift ever.  I would laugh as I told him that I thought I had enough of him in me to be a sales person, but that's not possible...no one met up to his skills.  I would hug him and let him know how much I missed his smile and hugs and how much I appreciated that no matter what type of mood he was in or what was on his mind that he was always happy to see or talk to me.  I would have to thank him for teaching us to work, but couldn't leave out the part of how difficult of a boss he was.  In the end, I would never want to let him leave again.  He was the one person that could always make everything alright.  In my mind he COULD do anything!  I'm so proud that he was MY DAD!!
When I came down with cancer at 25, my dad broke out in hives the day I went in for my first surgery.  It absolutely killed him to see me go through that, and at that time, everything was a walk in the park for me.  When cancer struck for the second time, his heart was broken.  I can't even imagine how he would handle things now.  I hope and think he would be proud in my efforts to make things right.  Everything I do has a little something to do with his influence on me.  His presence lives on forever, I see a lot of him in my daughter.
Well, since my father's death, my mother donated that shiny red caboose to the Sikeston Arts Council and it now sits at the depot in downtown Sikeston.  Seeing it gives me a bittersweet feeling.  I'm glad that is has become part of Sikeston's history, but it makes me sad that my daughter and her cousins haven't had the same opportunities as me and my siblings.
A day in ones life can make a huge impact!  What I would do for one more day with my dad!

Saturday, January 29, 2011

PLEASE READ THIS THE ARTICLE BELOW AND SIGN THE PETITION

Finally!!  I have found what I would call the best written article yet on the issue of Avastin.  Please, if you have a moment, read the article and sign the petition that is against the FDA taking Avastin from breast cancer patients. 
The author couldn't have summed things up better.  I've always wondered why breast cancer among all cancers gets SO much attention.  It is ironic that the one cancer that gets 99% of all cancer attention and support just happens to be the one that the FDA is deciding to no longer approve Avastin treatments for.  If they go through with their decision, they will truly see women FIGHT!!  You just don't mess with a terminally "well" breast cancer patient when it comes to the drug that is sustaining her life!  We will fight to make this right for all of us!  Critical decisions about life and death and quality vs. quantity will have to remain in the hands of the patient and doctor care.  This holds true for every citizen of the US.  If a drug has been already approved by the FDA and works to save a life, then it should NOT be pulled! 
 The hype behind October's breast cancer awareness month has become more of a marketing adventure for companies to grab the attention of potential buyers to purchase their product in "pink", making you think you are "helping" raise money for research and awareness.  Any money towards this cause is appreciated and needed, but seriously, do we have to make our dog food bags "pink" to do so?!?!?!  I, myself get SICK of all the pink stuff!  Let's give the other cancers their time in the "spotlight", no one cancer deserves more attention than another.  Purple is the universal cancer color, and I personally wish that it had stopped there.  And one more thing I must say, (not to offend anyone), but the "save the ta tas" and "save second base" T shirts and bumper stickers make me sicker than chemo!!  I doubt there are many breast cancer patients out there that find much humor in these, I sure don't.  Even at 30, when I had a figure and some looks about me, I could care less about loosing my breast, I just wanted to remain alive.  Vanity goes completely away when you have to face a mastectomy and loosing all of your hair within a month, and then you see what you're really made of!!  It's not such a "pink satin ribbon" world!  It would be more appropriate for us to wear a ribbon made of an IV tube with a poison sign on it than these pretty pink, everything is curable, perfect world stuff.
Ok, so I vented to you!  I don't do that often, but her article fired me up! 
Everyone keeps asking me where we are in this fight.  We are still waiting for the FDA to respond to Genentechs Notice of Opportunity for a Hearing "NOOH".
In the mean time, please go to this online petition and do your part to help us in these efforts to stop the FDA from interfering with our treatments that have been working.

Thanks Everyone For Following!!
Please keep checking back and sharing with your friends via fb or email.

Nicole Brochu: Revoking breast cancer drug will cost lives - baltimoresun.com

Nicole Brochu: Revoking breast cancer drug will cost lives - baltimoresun.com

Sunday, January 23, 2011

For Now, No News is Good News!

Hey Everyone!  I haven't blogged in a while because I haven't been able to find any information that is different than the last time I blogged.  Right now we are waiting to hear from the FDA to see if they are willing to let Genentech have their opportunity of a hearing for the continued use of Avastin for breast cancer treatment.  It is my understanding that the FDA does not have give Genentech this opportunity, but must submit their decision by Feb. 19th.  If they decide to go ahead with the hearing, the FDA can set whatever date they want, so this could drag out for a long time.  As long as it is drawn out gives patients the opportunity to continue taking Avastin, so this isn't such a bad thing for patients needing the drug.

Someone wrote in the speakout section of our local paper.  They wondered if I had checked with the drug company to see if they can do anything to help with the cost of the drug.  At first, when I read this, I was angry because my point wasn't being understood.  My best friend made me realize that the writer was probably asking that in sincerity to help me.  At that point I realized she was right and I am thankful for any and all helpful acts or words. 

To answer that question,  Genentech got to me first.  They read Mike Jensen's column and called me personally.  The information and help they gave me was invaluable.  They have support systems set up for the women that will be effected by this and they keep up with insurance companies so that the patients aren't suddenly blind sided.  I was very impressed with the concern they expressed.  In our conversation, they were very factual and never put any political tone on anything.  I believe that us breast cancer patients showing results from this drug will all be able to continue the same treatment.  That is GREAT news.

Having said that, keep in mind that this fight isn't really about the cost as much as it is about the issue at stake here.  My problem is that the FDA's reasoning is wrong!!!  They claim that the drug doesn't prolong our life long enough to expose us to the risk involved.  My problem is WHO DECIDES HOW LONG AN INDIVIDUAL HAS TO LIVE?!?!?!?  Should that be left up to the FDA?!?!?!  The side effects from Avastin are the very same for all of the other cancers that are allowed to continue to have the drug.  How can side effects be an issue for breast cancer patients and not the brain,  lung and all other cancers?  So without side effects to stand upon for removal, the only thing left in their argument is amount prolonged life.  Not only prolonged life, but QUALITY prolonged life.  Not all patients benefit from this treatment, just as I  haven't greatly benefited from hormone therapies, and Taxol, Cytoxin, Adriamicin, Gemcitabine, Falsodex, and Zeloda.  None of the above treatments were easy to tolerate and they only worked for me about 6-8 months.  Avastin has given me two years of quality life.  Yes, I know the side effects.  I also know the long term effects of any stage 4 cancer.  I think I'll take my chances as to just do nothing.  That is the point.  Not the cost, but the issue at hand and the fact that the FDA has the power to make this decision.

Please keep checking back often.  As soon as I hear something new, I will post it.  Keep this issue in your prayers.

Thanks!  God Bless!

Tuesday, January 18, 2011

Great Story! Please Read!

I just came across this article about women fighting stage four breast cancer.  The women mentioned in the article range in age from 40's to 80's.  Their stories are so inspiring and reading about their lives makes me realize that all of us women facing advanced breast cancer have the same concerns, thoughts, fears and determination.  I felt like I was reading my own story.  Hopefully in the near future I can meet these courageous women that feel as if they are alone in this fight.  It's not all a pretty pink satin ribbon with the words "fight like a girl" written on them.  Every time I see someone in those "fight like a girl" t shirts, I want to go up and punch the lights out of them, but then I remind myself that they are wearing that in support of women with breast cancer and that alone I appreciate!

Please, Please read this article.  Their lives will inspire yours!

http://www.nytimes.com/2011/01/18/health/18cancer.html

Latest News

I haven't blogged in a few days, because nothing has changed since the last time I wrote, but now we have some new information.  Please visit the links below to gain a better understanding of where we are in this process.  It looks like it may be drawn out for some time.  Being drawn out into months is a good thing for the patients needing Avastin, however knowing that a shadow of uncertainty follows you everywhere is a bit stressful!

I have so many to thank that there is no way I can mention names, or I'll leave someone out, but I must mention Mike Jenson.  The articles that he ran in the Sikeston and Cape papers hit the jackpot in the press.  Mike released the articles to AP and his column and the article that Michelle wrote about this hit papers all over the country.  My brother called me one night and said, "Julie, your article was in the Joplin paper."  He lives in Joplin and he said that no one realized that it was his sister that the article was about.  He called me back a few hours later to tell me to google "Julie Heppe Avastin", I was shocked to see all of the press that had picked up the story.  We even made it to MNBC!!  Thanks Mike!

Today, Genetech, the company that makes Avastin submitted its response to the FDA's Notice of Opportunity for a Hearing.  At this point we are waiting on the FDA to respond to Genetech and to the public as to its decision in allowing Genetech the opportunity of a hearing.  It is my understanding that the FDA has 30 days to respond to Genetechs submission.  The FDA does not have to go forward with a hearing and can simply continue with their decision to no longer approve Avastin as a drug used to fight stage 4 breast cancer.  We are hoping that this will not be the case.

In the meantime, I am working towards finding other patients just like me that are willing to join the "force" and fight.  I've been working towards this everyday. 

Thanks!  Keep praying that I do the right thing!  God Bless!

http://www.gene.com/gene/news/news-events/avastin/documents/NOOH-Prim-Sub-Doc_FIhttp://www.gene.com/gene/news/press-releases/press_statements/ps_011811.htmlNAL_16JAN2011.pdf

Friday, January 14, 2011

Alexander Reacts to FDA's Decision to Remove Avastin from Breast Cancer Approved Treatment List


FOR IMMEDIATE RELEASE
CONTACT: Jamie Hanks | (202) 225-8490

WASHINGTON, D.C. – U.S. Rep. Rodney Alexander, R-Quitman, released the following remarks today after the U.S. Food and Drug Administration said it is recommending that Avastin no longer be approved for the treatment of breast cancer. Avastin, a lifesaving drug, successfully treats approximately 17,000 women annually.

“As expected, the Obama administration has begun its process of rationing health care with its announcement to remove Avastin from the market for women suffering from metastatic breast cancer. Today’s decision to limit women’s access to a lifesaving treatment is amiss, and indicative of the frightful direction our health care system is headed.

“For the government to deny access to such a viable treatment is a severe intrusion into personal health care decisions that should be left between the patient and the doctor. Given that this drug helps over 17,000 patients manage their disease, it appears this move is merely based on cost cutting and rationing rather than on any real medical grounds.

“Avastin has extended the lives of thousands of individuals suffering from this devastating disease. Going forward, they will no longer be afforded that opportunity. This decision represents the first major example of things to come if components of the recent health care overhaul are allowed to continue. I will work with others in the incoming majority to restore the fundamentals of the U.S. health care system.”


Recently, Alexander joined four of his colleagues in sending a letter to FDA Commissioner Margaret Hamburg emphasizing their critical concerns and the implications of taking Avastin away from breast cancer sufferers. (Letter is attached)

U.S. Rep. Rodney Alexander, R-Quitman, represents the 5th Congressional District and serves on the House Appropriations Committee. He can be reached at the Monroe District Office (318-322-3500), the Alexandria District Office (318-445-0818) or Washington, D.C. (202-225-8490.) Visit Alexander's Web site at Alexander.house.gov or write him at 316 Cannon House Office Building, Washington, D.C. 20515.

###

Letter to FDA regarding Avastin ( 12/16/10 12:27 PM PST )

Rep. Fred Upton

Rep. Fred Upton

Form Letter (copy, print and mail to your elected officials)

To Whom It May Concern,
This letter comes to you with great concern of the FDA’s Dec. 16, 2010 decision to stop the approval of the drug “Avastin” as a line of targeted therapy for stage four breast cancer women.  The FDA continues to stand on their grounds saying that “cost” was not a factor in their decision and giving them the benefit of the doubt, I can appreciate that this was not a deciding factor.  However, the FDA does go on to say that their decision was based on the fact that the studies did not show a long enough survival time in the women taking Avastin to justify the risk involved.  The FDA stated that they were looking at targeted results of women surviving an extra 5 to 11 months on the treatment, but the results came in with the results of 2 weeks to 5 months of extended life.  
My concern is the following:  Does an expansion of any time in ones life not hold great value, especially given the fact that the drug “Avastin” provides women with a quality of life during a horrid and grim diagnosis?  Who should be given the opportunity to decide how long a person must live to justify administering a particular drug to them?  Shouldn’t this remain in the hands of the doctors and patients to decide?  Women fighting stage four breast cancer understand that all of their weapons to fight the disease have life threatening side effects that come along with treatment.  The patient and the doctor are responsible to make this decision for themselves and to monitor the progress and any side effects that may arise due to the treatment.  The truth is, when someone is faced with stage four cancer, side effects aren’t at the top of their list of concerns.
Please look into this decision that the FDA has made.  The FDA is in the process of deciding to allow the appeal of Genetech to plead their case.  The FDA’s decision to stop allowing Avastin to be used as a line of therapy for stage four breast cancer is a huge step backwards in cancer research.  Please take into consideration that this should remain in the hands of the doctors and patients individualized care, not government.   Many lives are depending on this drug.  Hundreds, if not thousands of women, have been LIVING with stage four cancer for two years now because of a miracle drug called “Avastin.”  Please don’t take this drug from their lives.
As far as the side effects, yes, Avastin does have some serious side effects.  But lets be honest here and look at all chemotherapy drugs.  They all hold the potential of deadly side effects.  Once again, this is the job of the Doctors to decide what would be the best drug for the patient.
Please let our concerns be heard.

Sincerely,

Congresswoman Jo Ann Emerson's Addresses

Here is a list of addresses for Jo Ann Emerson. 
2440 Rayburn HOB
Washington, DC 20515

(202) 225-4404
The Federal Building
555 Independence, Suite 1400
Cape Girardeau, MO 63701

(573) 335-0101 (tel)
(573) 335-1931 (fax)
22 East Columbia
Farmington, MO 63640

(573) 756-9755 (tel)
(573) 756-9762 (fax)
1301 Kingshighway
Rolla, MO 65401

(573) 364-2455 (tel)
(573) 364-1053 (fax)
35 Court Square
Suite 300
West Plains, MO 65775

(417) 255-1515 (tel)
(573) 255-2009 (fax)

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Thursday, January 13, 2011

Please Help by Calling Jo Ann Emerson's number at 573-335-0101

Several great friends have informed me that there is a phone number that you can call to express your concerns about the FDA's decision to pull Avastin from the market for stage 4 breast cancer patients.

Please if you have a moment take the time to call Jo Ann's office at 573-335-0101 and let them know your thoughts on this issue.  It would be helpful in our fight to have as many calls made to them as possible.

Thanks to all of you on this effort.  Thanks to Kathy, Rhonda, Kim, and Karen in gathering this new way that we can help.

Please  make this call.  Thanks So Much!!

God Bless!

Buddy Check 12: A Sikeston woman's fight for life - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Buddy Check 12: A Sikeston woman's fight for life - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Wednesday, January 12, 2011

New Useful Information

Thanks to all of you that have reached out to me after seeing the news coverage this morning.  My email was full of important messages from various people, some from far away.  I have learned the information that I have been searching so hard to find.  So here it is:

Genetech, the drug manufacturer of Avastin has until this Tuesday to submit an appeal to the FDA.  Once the FDA receives that appeal, then they will decide whether or not to grant Genetech the requested hearing.  The FDA does NOT have to grant Genetech this hearing.  If the FDA does allow Genetech to appeal this case, then this will become the 1st hearing EVER that the FDA will conduct.  Essentially this is uncharted territory in the history of the FDA.

It is my understanding that the FDA has 30 days to decide if they will allow Genetech the opportunity to be heard publicly to the FDA.  If the FDA decides to grant Genetech this appeal, then this appeal will be registered in the federal registry and will become public knowledge.  I believe that the public would be allowed to listen in to the appeal, but only 3 reps from Genetech would be allowed to speak.  The FDA will form an advisory committee that will be allowed only to ask questions and the final decision will be made by the 13 members of the FDA board.  The decision does not have to be made on the day of the hearing.

If the FDA continues with their efforts to stop approving the drug "Avastin" to stage 4 breast cancer patients, then Genetech can appeal to the go thought the US Court Systems.

So, there you have it, that is what will be taking place in the month to come.  What can we do?  Write letters of concern to our elected officials that hold positions in Washington.  Express your concern for our health care to remain an issue between the doctor and patient, not the US FDA.  The FDA says that one of the reasons that this drug is being recommended to be off the market for breast cancer is the dangerous side effects.  Today, I spoke with people of great knowledge on this subject just to see if the side effects were any different in breast cancer patients on Avastin than the other 4 types of cancers that are administered Avastin, but aren't at risk of loosing the drug.  The reply was as I expected, common sense, all patients taking Avastin have the very same serious risk factors.  Absolutely no different in breast cancer patients than any other.  Same potential deadly side effects.  My question now is, how can this become a deciding factor if it is not an issue with all of the other cancers treated by Avastin?  I don't see where this can hold much weight in their efforts to pull this drug.  So, they say cost doesn't have anything to do with this, and I say the side effects can't really play much into it, since they are only targeting breast cancer patients to no longer take the drug.  What's left?  Time.  How can they make a decision for the 17,000 women that are taking Avastin as their line of defense to fight this disease.  How can they tell them that this drug hasn't proven to prolong your life long enough.  What is long enough?  How can a patient know how long the drug may or may not work if they aren't allowed to have the drug.  This drug has worked well for me for 2YEARS!   I know there are hundreds out there just like me!!  What about the women that have gone down the entire list of targeted therapies with little choices left, should they not be given the opportunity to give this drug a chance.  We aren't asking for much.  We simply want all therapies that have any benefits whatsoever to remain available as a weapon to fight.  Two weeks of extended quality of life can make a lifetime of difference to the people that are left behind.  No one has the right to decide how long is sufficient time for one to continue to live.  This is immoral.  It amazes me that we as Americans are allowed to take a life in the beginning stages through abortion, but we may have our hands tied and not allowed to extend our lives because someone panel of 13 professionals say that the studies don't show significant extension of life.  Bottom line...This country needs GOD back into it.  We have been quiet to long, and this beast has crept up on us and will start snowballing on all of us if we as Christians don't start standing up to our government and voicing our opinions on what is right.  Deciding how long an individual can benefit from a drug to make it available to them is WRONG!!

Please write any senator, representative, congress and FDA members and let them know where you stand.  We have elected these people to be our voice, now we need to let them hear the voices!!

Thank You All!!

God Bless!

Tuesday, January 11, 2011

Research, Research, Research....

Suddenly I feel like I'm in college again.  I've been researching information all since 10:00 this morning, and I still have so much to sort through!  Google is nice, but it doesn't always get you ALL the information out there.  I have read articles from the US Congress, US Senate and FDA websites.  I've emailed various people in Washington that are very concerned with this FDA decision and do not want it to pass.  On another note, I came across this lady that was diagnosed with breast cancer 20 years ago.  She has become a huge activist and has written books, articles and has a website for women with stage 4 cancer.  I read one of her articles today and was appalled!!  She is backing the FDAs decision to stop the use of Avastin for women like me.  What?!?!  Why would any women fighting breast cancer do such a thing.  I quickly emailed her and said "Just curious, have you been diagnosed with stage 4 breast cancer?  I look forward to your reply and then I will expand."   She replied.  She was diagnosed with stage 2 breast cancer years ago, and has never had a recurrence since.  She went on to say that she felt the need to provide metastatic breast cancer patients with more information so she became real active in the stage 4 support and awareness.  OK...She hit a nerve with me and I nearly lost it with her.  I emailed her back typing as fast as I could go.  I told her that I could appreciate the fact that she wanted to support and provide information to women with breast cancer, but how could she boldly state her oppinion backing the FDAs decision when she has never had stage 4 and options are becoming limited.  I can't understand people like that!  Thousands of women are LIVING with advanced cancer because of this drug, and you want to pull it from them?   I won;t repeat all that was in my return email.  I did refrain from any harsh words but I think my point got across.  I didn't hear back from her.

Other than that little set back, I feel like I had a productive day.  Catherine was with me at the studio working on ordering pictures, editing and taking orders.  This gave me the entire day to sit with the laptop and go to work on my mission.  I feel like time is running out.  I had treatment yesterday, and wondered how many more before a decision is made.  I am getting tired of this, and often feel like I'm not making headways, but I can't give up.  This fight is for all Americans, not just me and my family.  It's not just about cancer.  It's about right and wrong.  It is just that I have been personally effected by this that I have taken on this battle.  I now realize that there are other ways that I could have been voicing my opinions in different areas of right and wrong in our country.  I'm realizing that I have been very self centered and only concerned with my own being, now I'm seeing a larger picture.  I hope that through all of this I can become a better citizen and leader and that I can do my part in standing up for my beliefs.

I wrote letters to Jo Ann Emerson and Ellen Brandom today.  I also wrote a letter that you can mail to them and others in Washington to express concerns about this issue.  I will be making a list of people of interest and their addresses for all of you that have expressed your willingness to help in any way.  We have little time, and need to bog down their mailboxes with letters of disapproval of the FDAs decision.  Telephone calls to our Representatives, Congress, and Senate would also be of help.  Also, please continue to share this blog to as many people that you can.  This will be my source of letting you know the latest news and ways you can help.

Tomorrow, I hope to let you know where I will be leaving addresses and letters for anyone interested in picking those up to sign and mail.  I need to get a petition started tomorrow as well.  As I've mentioned earlier, I've never been a real political person and I'm not sure the proper ways of doing a petition, so if anyone would like to guide me on what is required to make the petition legitimate, please email me or leave me a message here on the blog. 

I'm still hoping to be able to get to Washington to testify my cancer LIVING life with them.  Please pray that this mission will become a success.  Thanks to all of you!!!!

Don't forget to watch the morning show on KFVS 12 or the evening news at 5:00.  You don't actually have to look at me, just listen.  HA HA!!

Have a good nights sleep and a great day tomorrow!
God Bless!

FDA's Avastin decision is a breast cancer patient's worst nightmare | Washington Examiner

FDA's Avastin decision is a breast cancer patient's worst nightmare | Washington Examiner

Monday, January 10, 2011

Updates

The article in the paper brought me some amazing responses.  I never dreamed that people would be willing to do so much to help me in my efforts.  Thank You!  I am dearly grateful for all of you.

I've been busy over the weekend and haven't kept you up to date with new things I've learned.  Before I go into all of that, I want to let you know about my weekend.  Friday morning I was interviewed by KFVS 12 news which will be aired on Wed. during the morning show, and at 5:00 p.m.  I am glad that my story will be told and look forward to the response that may come from that.  I DON"T look forward to seeing myself on TV.  I am a very modest person with little vanity!  Something about going through Chemo and pulling out all of my hair in my office, putting on an  itchy wig, and walking back out of my office to work put an end to all vanity for me.  Once my hair returned, I didn't care if I ever brushed or cut it again.  I was just excited to be warm at night and to no longer look like someone on Startreck.  Looks took on a whole new meaning to me, so needless to say, I don't really want to look at myself on camera.  I get to rambling...SORRY!  Friday afternoon, I was physically drained and slept for a long period of time.  I crawled into bed, closed my eyes and never moved!  Friday night we went to Lambert's and my great friend Sara M. joined us then came over to watch a movie.. Before going to bed, I researched the Internet looking for the latest news regarding this drug.  Saturday, Rebecca and I both slept late.  She's been fighting a cold, and I believe I may have a sinus infection, so we are both drained.  She went to Flickerwood in Jackson Sat. night to participate in a youth rodeo.  She did an incredible job.  I'm the proudest mom in the world.  We will have many more rodeos and barrel races to attend, but from now on we sill sign up for slack that takes place in the day.  This past Saturday, we signed up for performance and were at the arena from 4 pm to 1:30 am.  Never again!  Well...never say never, just hopefully not again. 
Horses are such a part of our lives.  They have always been a huge part of my life as a kid, but even more so since Rebecca, Dewey, my Mother and I all enjoy and ride them together.  We have 5 horses.  They are all different breeds, have totally different looks and sizes and they all have their own personalities.  They are amazing creatures.  You don't have to own or ride horses to gain knowledge from them.  Horses make such strong statements.  They can be standing so very still in the quiet, not a breeze or noise around, yet they speak loudly.  Their presence is majestic.  They move their bodies in so many ways.  Sometimes they appear to be dancing on air as their tales and heads are held high and the move quickly but softly on the ground as if they are dancing with the wind.  And then there are the times that they run forcefully and demonstrate their power.  At those times, we hear the hooves beating the ground as if an earthquake is beginning to rumble below our feet.   Horses teach us patience as they are willing to work with us and want to please, but they require trust.  They must trust us first, before we can expect them to become submissive to us.  They are noble animals and they have taught me so much about life.  They have been my therapy during all of this cancer craziness.  They keep me as sane as I able to be!

Sunday my article ran in the paper.  I received many emails from friends and also strangers whom I now call friends.  Mid afternoon I received a heartwarming phone call from one of my parents friends that gave me some great encouragement.  She, understanding how politics works, gave me a list of things to accomplish by Wed. and that is what I have been working towards.  Last night I stayed up researching factual articles that didn't seem to lean to far to the left or right as I want to state the facts and not assume anything that is not factual.  I saved the articles under favorites so I can print them tomorrow.  I researched and found a timeline of the drug avastin and that will be useful in my case.  The problem that I kept running into is that there hasn't been any mention of whey Genetech will be allowed to plea their case to the government.  I had treatment today, and I had the nurses see if they could find out any more information on this time sensitive issue.  They were so kind to call the  Avastin rep.  They Avastin rep was happy to hear from them because they need all the people on their team that would be a positive force for them that they can get.  They told her that people like me is just what they need.  She gave me their number and I plan on calling them tomorrow.  I've emailed them, but with companies that large, you really don't know what division is the proper one to contact.  Anyway, the rep for Avastin said that there has not been a time released as of today's date.

When I sat down with my laptop tonight to research, I found the article that I posted here tonight.  It states that Genetech has 15 days to plea their case or the FDA's decision will become final.

Now, I have the pressure on me like never before.  That is only two weeks away.  They have to get up their to try and make a difference, or all of us women that rely on this drug need to get our butts up their ourselves and not wait around on Genetech.  You know the old saying, if you want something done right, you have to do it yourself.  I'm ready to do it myself if that is what it's going to take.  I have a kid that needs her mother!!

I'm not quite sure if I have a sinus infection causing me to want to sleep all the time, my mono maybe never got better or just the stress that is weighing on me.  But I'm extremely tired and could sleep 24/7.  I haven't of coarse!  While I do take extended naps everyday, I also spend time with my family and research this topic in hopes to make a difference.  My husband asked me today what hours I was going to be at work this week.  I know, I have a business to run as well, that is another stress on it's own, as right now, my efforts are here, but I'm required to help make a living at the same time.  I never knew how to juggle and I admire the women that can!!  Please pray that I will have the energy that I need to get through tomorrow, then the next and next day.  I have so much to do, so little energy and my mind is only in one place right now.  Pray for me to become an expert at juggling and that I can run my business at the same time so that I can bring in an income.  Thanks to all of you that care enough to follow my blog.  You are my warriors of hope and may God Bless You.

Many want to know how they can help.  If anyone can find out exactly the dates of the hearing and the vote, this is the most important information that I am needing and having trouble finding at this time. 

Thanks Dearly!

Julie

FDA rules to remove breast cancer indication from bevacizumab | HemOncToday

FDA rules to remove breast cancer indication from bevacizumab HemOncToday

Friday, January 7, 2011

Standard Democrat and KFVS 12 Interview

This week was very productive toward being heard thanks to the kindness of  The Standard Democrat paper and KFVS 12 News.  Both interviewers with the two news medias were easy to talk with and made me feel extremely comfortable.  Thanks to both of you for your time and efforts.  I'm glad to know both of you!

God heard my prayers and blessed me with a flawless morning.  Even though I woke up later than I planned (I'm not a morning person) I was able to pull it all together and be ready on time.  Stephanie with KFVS 12 was such a pleasure,  I felt like I'd known her all my life. When I sat down in front of the camera something took over me and I was at ease and started talking from the heart.  I don't even know exactly what I said, it simply flowed.  I can't explain it other than this is life as I know it and God gave me the strength to share it with others.  Now I pray that what I said will make sense and make a difference in the governments decision  to back the FDAs decision or not.

Thanks to all of you for your continued support.  Thank to Vicki H. for getting the ball rolling on this interview.  You are truly inspirational  Vicki.  Thanks to Rhonda, Katie, Teresa, Lauren, Sara, Rebecca and Dewey for being the early risers that helped me through this morning.  Thanks Rhonda for being interviewed.  At least they will see one beautiful face in the interview!  HA!  And to my great friend Beth F.  Thank you for allowing us to use El Tomaria Farms for the interview.  It was a perfect setting, and your indoor arena worked perfect.  Most of all Thank You KFVS 12 for giving me the opportunity to share this story.  Stephanie, you and your camera man were so incredible, it was so nice meeting you!

The footage will be aired January 12th on the morning show and at 5:00.  Please watch. Oh, and the article that the Standard Democrat is publishing will be in the paper this Sunday.

I've got to get to bed, my cowgirl is barrel racing and pole bending tomorrow.  She has been practicing daily.  Being a rodeo mom is the BEST!!  Go Rebecca!!

Good Night!  God Bless

Thursday, January 6, 2011

My Prayer Tonight

Dear God,
Tomorrow is a big day for me for many reasons.  I will get to tell my story to the tri state area on KFVS 12 news.  It is so important that what I say and how I come across to others can make the difference needed to benefit my cause.  Please be with me as I speak each word for the truth and help me to portray only factual information, for many lives are at stake here.  Lord, I realize that there are cancer patients that have lost their battles while taking the drug Avastin, and some that have died due to the side effects of Avastin.  I pray for those families as these recent news flashes about the drug probably bring back the sting of death to them.  I also know Lord that with every cancer drug, there are severe risk that we are willing to take in exchange for life.  I'm asking that those that have a negative feel for the drug Avastin due to any side effect to please take a moment to think of other chemo drugs like Adriamicyn, and Taxol and many more that also come with the same amount of lethal risk.  There is no good answer to cancer treatment.  We would love a cure to all cancers as soon as possible, but until that time comes Lord, please allow those that are benefiting from the drug Avastin to be able to continue its use.  Be with me as I share my story that I am able to show people that I am LIVING with cancer due to this drug.  Please let me remember to share with everyone that I monitor my health with nearly every heartbeat and I am in my doctors office as often as most people drive through fast food restaurants.  Please help me to encourage all cancer patients to become their own advocates in their health care and to go to their doctors as they feel needed as well.
Lord you know the first thing that I did when I was diagnosed with stage 4 cancer.  I sold my house, moved to the country and bought horses.  I was raised around horses and wanted my 5 year old at the time to have some great memories with her mommy and horses.  Little did I know that 6 years later, I would be the mother of the biggest horse fan in the world that rides daily, rodeos and collects every Breyer horse that has a historic meaning.  I got my horse loving girl alright, and now I want to continue to be here for her.
Please Lord, let my voice make a difference for me and my family and for so many more out there just like me. 
Also thank you for bringing me in touch with some of the most amazing people ever.  Thanks to the kind ladies at Macy's tonight that were so helpful.  Thank you for all the people that have joined me on this fight. 
And Lord, on a lighter note, please make sure I look as good as I can.  You know how much I hate to be in front of a camera.  I don't ask for miracles, just make sure that I'm as neat as I can be, that my zipper stays zipped and that my pants don't fall down!!  I knew you would laugh at that.

Thanks for everything!

In Christ Name,
Amen

Monday, January 3, 2011

Stop The FDA From Disproving Avastin To Treat Metastatic Breast Cancer

Herception/Avastin Combo Saves Stephanie Grimes

Progress Towards Being Heard!!!!

Today has been a great day in my efforts towards being heard.  When I opened my email, I had two very important messages that gave me great hope that through all of you that care about me and this issue, my voice is going to start being heard.  Mke Jenson with the Sikeston Standard Democrat would like to do a story on this topic.  They will be meeting with me on Wed. morning to interview me for the article.  This is great!!  Starting in our own community can branch into larger populations of readers and viewers.  The ball is rolling!  The second email was from KFVS 12 news.  They want to share my story on their monthly Buddy Check 12 segment of their health news.  They would like to tape towards the end of the week.  I emailed them back, and I'm waiting for the final place, time and date. 

This didn't happen by chance.  These connections were made possible by the efforts of so many of you!  Thanks to all of you that have become an active participant in making a difference in so many lives!  Your calls, email or forward may be the direct link to saving a life.  Thank YOU!!!  YOU DO MAKE A DIFFERENCE!!

I would love to name out those that have been so proactive in this cause, but I would be afraid that I would leave someone out.  There are dozens of you and you know who you are.  THANK YOU FROM THE BOTTOM OF MY HEART!!!

On the other side of the token, it saddens my heart that many  more don't join in on the fight.  I consider myself close friends with so many people and I find a life or death matter a big deal.  I guess I need to turn things around and try to imagine what I would do if it weren't me being directly effected and one of my friends.  I would hope that I would become a tool of some sort, but I realize that sometimes it is difficult to pull ourselves out of the crazy fast paced life that consumes our thoughts and time.  If you haven't asked someone to join and pass along this blog, please do.  This story landing into the right hands could make a huge difference. 


Thanks To All of YOU!!  GOD BLESS!