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!!!

Wednesday, February 16, 2011

Letter to FDA from Susan G. Komen for Cure

Komen to FDA: Don’t shut the door on Avastin yet

Acknowledging the FDA conducted a thorough investigation and made a hard decision to propose withdrawing marketing approval for Avastin for metastatic breast cancer, we still want another public hearing to be held. We sent a letter yesterday to the FDA encouraging the agency to hold a hearing to talk about the appeal made by Avastin’s maker, Genentech/Roche.
The FDA cited studies indicating Avastin did not affect overall survival of metastatic breast cancer patients and had significant side effects for many.
However, we also know that for some number of women, Avastin works and works well.  We have heard from women who are gaining not just months, but years, with a high quality of life, from this treatment. We are concerned about the potential impact on women who are currently benefiting from Avastin if the FDA removes its approval for its use as a treatment for metastatic breast cancer. We want to be sure that women who are using Avastin, and for whom it is working, can continue to have access to it, and that their insurers will continue to pay for it.
We also want Genentech/Roche to keep making the drug available to women through its patient support programs, consider an expanded access program and continue research on a biomarker for Avastin to determine which women will benefit from the drug.
The full text of the letter is available here

Please Keep Praying!!! Houston Bound Next Week!!

Each day, I browse through the net looking for the latest news on the FDA's decision to hear Genentech's Notice of Opportunity Hearing.  It is becoming more difficult to find information...the FDA hasn't responded to the "NOOH" yet, so the issue seems to be slowing down in the main stream media. 
It is important that we keep this issue posted so that we can continue to gain awareness of what is taking place with our cancer research and what appears to be "Big Government"  control of health care.
I've been off this treatment now for 3 weeks, and will be returning to Houston next week for follow up appointments, blood work, and scans.  I pray that my body has recovered from any damage done, and that I can continue taking the Avastin.  Moving to another treatment concerns me due to the side effects that can leave you with little "quality" of life, and simply the fact that no other drug has ever worked for such a long period of time for me.  Please pray that whatever the doctor recommends that I will have the strength and courage to handle things.  I'm not ready to compromise my quality of life and ability to do things with my family, however I'm a fighter and will do what needs done.
As I have mentioned earlier in the month, no matter what the doctors say, I will continue this effort to fight for our rights as cancer patients.  This drug has been incredible to me and I hope to stay on it!
Thanks to all of you that have showed your support.  I've had emails that you have circulated, prayer warriors, churches praying, customers continuing to call the studio for appointments, and the list of support goes on and on...too much to write about. 
Thanks for the tickets to Houston Jennifer!!  I LOVE you!!  Can't wait to see you.  You are always the highlight of our Houston trips!
Please pray for our safe trip there and back and for wonderful news!

Love You All!!  God Bless!!

Oh, yeah....I've been selling jewelry to help me relieve some financial stress and to help with my trip to Houston.  Thanks to all of you that have taken the time to look at it and also to those of you who bought.  Even if you don't wear jewelry (like me), let someone know about it.  I don't wear jewelry because I don't have the cute clothes to wear with it, and I HATE the thought of buying clothes for this gross body of mine!  I have really enjoyed picking out the jewelry and handling it.  It's been FUN!!  I photograph so many high school seniors that I have some sense of fashion even though you don't see me wearing fashionable things.  I would if I felt better about my looks.  HA HA! 
If you would like to see the jewelry, it is currently at my mom's house for a showing.  I only purchased one of each item so that you know you are getting something somewhat unique.  I will be continuing to purchase more jewelry and hair accessories to keep displayed at the studio full time.  Please pass this news around.  Thanks!!!!!


Wednesday, February 9, 2011

Things Could Always be Worse

One of the wisest things that I have ever been told was from an UCA cheerleader at cheer leading camp at Ole Miss.  The first evening at camp after a hard days work, the campers were all divided into small groups with one staff member to each group.  Our group consisted of about 6 cheerleaders and the UCA staff member.  We sat in a small circle listening to this young man talk to us...and I had no idea at the time that what he was saying would be the foundation of my thinking in life.  He went through several tragedies that he and some loved ones had faced, then said when life comes at you with terrible things, you have to ALWAYS remember no matter what, "Things Could Always be Worse."  He had us talk about what we thought could be the worse thing ever, and he could always come up with something that would top that. 
There hasn't been many of my treatments or test that have been too difficult, but when times were hard, I would think about how lucky I was to to not have things worse.  One of the most difficult things I've had done is my lung biopsy.  It was very painful, even with sedatives and I had to remain still.  The entire time, I would think about all the kids at St. Jude's that have to endure things like this, and how well they deal.  Suddenly, my pain would decrease.  There is nothing that you can go through in life that couldn't be worse.
God tells us that he won't give us more than we can handle.
Though sometimes in my prayers, I want to tell God that I'm at the end of the rope, and I can't handle any more, but he's my creator and knows me best.  All I can say, is I must be one tough lady, because things haven't been letting up lately.
My stress levels have been at the highest peak ever!  I know that this is not good for my health, and I try to handle things better, but I have had a rough year.  Last year during my busiest time of year  at work, I took the money that I made and started a greeting card business.  The cards are adorable and are in many stores in the Southeast Missouri area.  The mistakes I made were #1.  I didn't and don't have time to run two businesses, take treatments, be a mother and a wife.  There isn't enough of my time for all of that.  #2.  I put 3 months worth of earnings and then some into this business and now I'm trying to get caught up.  That busy time of year is right around the corner, and I'm praying for the busiest Easter Season at the studio ever.  I'm ready to get back on track.  I can not deal with this stress much longer!!  It's consuming me physically and mentally.  So having said all that, I need your prayers in two areas.  The first...please pray that I can get things back to order at work and that my customers continue to call.  Often when anything circulates about my health, our phones will stop ringing.  I plan on working full time, so please let others know that I AM still working.
The other thing I need your prayers about is somewhat of an irony.  I haven't been feeling that well for a while now.  Mostly tired, sleepy and get out of breath with a fast heart rate just from walking up my stairs.  I've been having to leave the studio nearly everyday, to go lay down for a few hours, then I return back to work.  I just feel the need to sleep all the time.  The energy is gone.  I realize that stress can do this, I I've never been at this level of stress before, but I knew this was more than stress.  So the first thing I had my doctor order is a tumor marker blood test.  This can give you a ballpark idea as to if your tumors and the same, growing, or decreasing.  Mine are high again.  They haven't been high in over 2 years, but they are back at an all time high.  I return to Houston on the 21 of this month, and I've been diligent in taking my chemo pills, so I hope that I'm better when I have that lab drawn there. 
The other thing is that I had some labs ran over the weekend.  They were sent off and the results came back today.  I am being taken of Avastin for 2 weeks, at which time I will redo the test to see if I'm better, if not, I'll wait another two weeks.  One of the dangerous side effects of Avastin is the loss of protein in the urine.  I had a 24 hour urine test, and my doctor told me that the reason I am feeling so tired was due to the fact that I'm loosing a full weeks worth of protein in a 24 hour period.  As a result of that, my body is trying to compensate by retaining fluids in my legs.  We caught my problem early, however, Dr. Sides said that this is one of the dangerous side effects of Avastin that the FDA talks about that can lead to death.. 
So, now, I'm worried about what's going to come next.  I don't want to progressively get worse.  He told me that when I get to feeling real tired, to lay down and rest.  I have to listen to my body and respond to the signals.
OK...So I know you all must be thinking, Oh no, where does she stand now with the Avastin issue.  Well, I'm going to tell you.  If my conditions causes me to never be able to take Avastin again, I will still continue to fight for patients rights to be able to have the drug as a line of defense for late stage breast cancer.  I strongly believe, that had I now been given this opportunity to take Avastin, I would either be already gone, or I would be living a miserable life.  These last few years of my life have been some of the best ever.  I'm so thankful to have had the moments of fun memories with my family and friends.
Also,as I've been saying all along, this should remain in the hands of the doctor and patient.  I knew I had new symptoms that were not normal.  I called the oncology nurses, they had me come in and ran a CBC.  It came back normal, so the Doctor wanted to talk to me.  He asked me a million questions, as if I were in an episode on "House."  It was obvious that he was not going to stop until he had a reason for the way I was feeling.  That day I was quite impressed.  He got to the bottom of this and my life isn't at risk of death over the new side effect because of our relationship and our ability to communicate with one another to know what part of the puzzle we need.
Houston will be a nerve racking time waiting for results of blood work and scans.  I'm not ready to have to change treatments.  I love Avastin.  I'm hoping in two weeks I'll be better and everything will get back on track.  If my cancer has spread, I am sure that I will have to start a new treatment.  Prayerfully, It will all be good news..
I'm not the first and won't be the last person dealing with a lot on their plate.  I wish it could all just go away and stop haunting me.  It haunts me while I'm awake, and when I'm asleep.  Either I can't sleep from the stress, or I have bad dreams from the stress. 
You all always ask me what you can do for me to help.  I have two things for you to do.  1.  PRAY  pray for my strength and my families strength to be able to handle anything that my come our way.  Pray that I can continue taking Avastin.  Pray that my customers are aware that I am still working.  I get more stressed  when things are slow at work, so please pass the word, that I am working.  When I don't have customers I can't fulfill my responsibilities to our family and that itself breaks my heart. 
Thanks to all of you for taking the time to read my blog. 
Don't forget to read the article I posted about an hour before posting this. 
As soon as I know any changes or decisions with the FDA and Genentech, I will let you know.

Thanks!  God Bless

The Avastin Saga

The Avastin Saga