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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!!!

Saturday, June 4, 2011

Updates

Hello to all of my followers.  It's been quite a while since I have updated you on both where we are with the Avastin hearing, and also my own personal health.  Before I get into these topics, I just want to thank EVERYONE for all the prayers, concerns, cards, on and on and on ...the incredible love and compassion you have given my family and me.  I'm hoping to get a formal thank you note out to you soon.  I plan on placing a Thank You note in the paper real soon.  I have sat down to write it MANY times and there are no words to express my feelings of appreciation to all of you.  I got to watch a video of the incredible benefit given in my behalf, and my body became OVERWHELMED with your support.  It was somewhat a state of shock that went throughout my mind and body.  Thanks to all of you!  Somehow, someday, I will do the best to my ability to give back to all of you.  What an awesome, caring and supportive community we live in.  God is so GOOD!

Ok....as you all know, this blog didn't start out to be about me personally, but somehow has turned into a very personal testimony of how my life is and has been since Feb. 17, 2011 when suddenly I became so ill that your prayers and the blessings of such skilled medical teams got me back to my family where I feel at this moment in time I belong.  I have become much closer to God, as now my mom, daughter and I read the Bible every night.  It has become something we look forward to, and what little did I know.  I'm amazed at the Bible and teachings of Jesus, and I do realize that God's will is the best way for me, whatever he believes is best for me.  I'll continue studying and putting my faith in God.  I've learned, I'm not the best navigator for my life.  So...yes, this blog has somewhat shifted into a personal journey of my daily life now, and how you have blessed me and I hope I can help others facing difficult moments in life.

The Avastin update, the FDA did grant the drug company Genentech a "notice of hearing" for the continuation of the drug Avastin for stage 4 cancers.  The hearing I believe is in late July, scheduled for two days.  After all of the health issues I've faced these last few months, I still hold FIRM on my belief that the drug should STILL remain an option for women.  Remember...all cancer drugs have serious side effects and the decision should remain between the patient and doctor.  Sadly, the FDA is not allowing any cancer patients to speak at the hearing...hopefully that will change.  I am no longer taking Avastin.  The drug has given me 3 years of  pain free, illness free, and the "feeling" of cancer free living.  For that  alone, I am thankful for the opportunity that I had to use the drug.  Whatever I can do to continue this effort, I am willing to do so for others to be as fortunate as I have been. 

Now...an update on my health.  As I mentioned a moment ago, I am no longer taking Avastin.  My body started reacting to the drug in a dangerous way, and my doctors and I felt that it was time to move on to another drug therapy.  Having been so sick for so long, I had gone without a cancer treatment for 3 months.  I realized that this put me at risk for additional mets (more spread) of the cancer, but treatment couldn't resume until my body began to regain its strength.

Knowing the pain I've been having, my trip to MD Anderson for scans and follow up was no surprise to me when the reports were shown and read to me.  This is simply stated for your prayers, not sympathy...my cancer is now in various spots on my spine, on the left clavicle, left hip bone and a small area on the right side, I think he said a rib...that one was not significant to the others.  Even though I knew what the doctor would say, it was still difficult to hear.  My mom, daughter, and sister were in the room with me and it made me sad to see them sad.

Plan of action?!?!?!?  I will fight with all my might with God, family, friends, customers, and my community encouraging me the whole way through.  I started a chemo treatment 10 days ago.  This is a new treatment for me, but the drug has been around for a long time...I just haven't tried it on my cancer yet.  This chemotherapy along with a treatment for the bones will be given to me once a week for 3 weeks and then I will get a week off.  I've been told  both yes and no to hair loss, so, time will tell that one.  Prayerfully I won't.  I look like a Star Trek freak without hair!

Last week, two days after treatment, I was readmitted into the hospital in Cape and was there for 4 days.  The days went by quickly, because of how sick I was.  I barely remember any of it.  Maybe that's just going to be a one time ordeal and I'll tolerate treatment better now.  Because of the sickness, my next treatment isn't for a couple weeks.  I have my treatments in Sikeston at the Infusion Center that is a part of Missouri Delta hospital in Sikeston.  They have been good to me.  It's nice not to have to drive far for treatments.

Along with this chemotherapy,  I am planning on becoming part of a study for another breast cancer drug.  This will be done through a hospital in Dallas, Texas.  It is the Crowley Cancer and Research Center.  The drug doesn't have a public name yet, but I am promised to receive the drug, not a placebo.  The hopes are to increase chances of survival by adding additional cancer fighting weapons at once.    I would have to travel to Dallas often, but the center works closely with a program called "Angel Flight" that utilizes the generosity and willingness of large corporates to fly patients to treatment destinations.  I've known about this program, but never felt that I was truly in need of it, as over the past I could work through treatments, didn't feel sick, and could afford my transportation.  This time, however, I am thrilled that this mode of transportation would be an option for me.

I have started getting out and about just a little at a time.  If at anytime, you see me and I don't respond right away, forgive me.  I'm on some heavy pain medications, and my vision seems to be worse.  It''s difficult for me to recognize someone from a distance...I'm sure that part is due to the 40's eyes that I'm struggling to learn to use.  HA!

The studio is still in operation, but by appointment only.  Thanks to all of you for your patience with your appointments.

This summer I plan on getting plenty of rest and aim for better health, scrap booking and creating albums of Rebecca that should have been done a long time ago, and we plan on taking Rebecca to Lexington and Louisville to tour the horse museums and participate in "Breyerfest."  She has always wanted to go to Breyerfest, so this is the time to do it.  Breyerfest is a festival that is all about Breyer horses.  The little model horses that are collectibles.  She loves her collection.  We don't keep them in the box, we make them more valuable by the years we have enjoyed watching her play with them.  She has quite the collection too!!!  I have a few friends that have offered  a place to stay on the beach in Florida, so if my health permits this, I may just do that as well.

Oh...one more thing I wanted to share with you.  Our house is on the market now.  The decision was not easy, but this is where our lives are at the moment.  God will lead us through all of this.

Thanks Everyone!  I''ll try to keep you posted more often.  If I can help any of you out there that are battling cancer and need me to listen to you and pray, please email me.  It appears as though I only have 68 followers, but I actually have more that 7 thousand and they are from 16 countries, so thanks to all of you that read my blog and pray for me.

God Bless!!

I forgot to thank you for something else.  Thanks to all of you that have ever donated blood.  I've been needing extra blood lately and it helps me to feel so much better.   THANKS!!!! 

1 comment:

  1. Hey Julie, been worried about you and praying for you. So glad you are doing better. the hearing for the FDA is June 28,29th. Survivors as well as those who are against keeping the drug are able to speak now. I will be speaking on behalf of myself, you and many others who have had the benefits or who may need the benefits of this drug. They are also organizing a peaceful protest the morning of the 27th at 7am outside the FDA building where the hearing is being held so if you have any friends in washington, I would love it if they would come walk for you and hold a pic of your beautiful face. They need to know we are real. they seem to think only the statistics that didn't do well on the drug are the only ones out there and as one writer said, "there are no survivors alive who have been on avastin to testify." thats not a perfect quote but very close....I am just wondering what rock he has been hiding under. there is another site that 2 husbands of women on avastin started that people can find out more about the protest etc. and that is fameds.org If anyone can make it to the protest, please sign up there and they will let you know what to do. this is really history making as the FDA hasn't ever done a hearing like this from what I have been told. If you want to write something, depending on how long they give me to speak, I would be happy to speak for both of us.....let me know!!!! God is good and this will all work out for good one way or another!!!!!Romans 8:28 Christi Turnage

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