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, September 21, 2011

Blood Does Amazing Things!!!

The title of this post is weird I know, but it will all make sense in the end. 

While on FB for a few minutes today, I suddenly realized that it has been forever since I've updated my blog.  So many kind messages were on my wall and in my messages.  I appreciate all of the support that you give me...it is uplifting and encouraging!!  Thanks for the prayers and concerns.  A lot has happened in the last 3 months and I hope to update you without boring you.

Although it seems slow to me, my close friends that see me often say that I've come so far and keep improving daily.  Some days are better than others, but I agree that I seem to be getting better.  Daily I'm told by someone that I am so positive and encouraging.  Well...it may seem that way, it's really just that I complain and dump all frustrations and fears upon my family and very close friends.  They can tell you the truth...I handle things the way everyone else does, just one day at a time.  My mother asked me a few weeks ago if there would ever be another day in my life where I'm not overwhelmed by cancer.  Once she said that, I realized she was the one that had to listen to every complaint I had.  It was also somewhat of a good thing to be asked that because she was right...I am consumed by thoughts of my days very sick in the hospital, and by the pain that takes over my body about exactly half of all time now, and by living from blood test to blood test anticipating what each one would read.  Since the day she asked me that question, I have made a conscious effort not to complain when I felt pain and to try hard not to think about my health.  It has been hard for me to do, but I am making some progress in letting go of the thoughts of "what ifs" and "what is to come."  My efforts lately have been focusing on others with cancer and being supportive to them, and sharing whatever knowledge I may have.

One thing that has been a positive change in my life is that I have started reading the Bible every night, and got through the new testament.  The last few weeks, I have to admit, I've not been good at reading.  Almost as if I finished a book.  Then one day, sitting in the "chemo" chair while getting two units of blood, it occurred to me just how important and amazing blood is.  Blood is gross!  Most people don't want to see it.  We take it for granted unless we become aware of what it does for us.  I had no idea until this year how GOOD blood makes us feel.  When you become low in blood, the body starts getting extremely weak.  Effort is needed for the simplest task, and even then your body becomes breathless, fighting to get the oxygen needed to do ANYTHING!  It is the most exhausting feeling I've ever known, and lately it seems as if I've been having to get blood monthly.  So...anyway...back to the reading of the Bible...while reclining back in that chair after being hooked up to fluids waiting on my 2 units of blood to arrive at the infusion center, I thought "It's the SAME FEELING!  When your soul is feeling tired, week, and empty...what we need is to open our Bibles and read about the blood that saves us... the blood of CHRIST!  That blood restores my soul just as the donated units of blood restores my body!"  The days that I go in to receive blood, I'm dragging into the building, but when I leave the center, I'm already feeling the energy I had been missing.  Anyway...I just had to share that with you.  It amazes me how much better I feel when I read my Bible.  The blood of Jesus will save my soul, and the blood of gracious blood donors saves my body. 

Now...My latest Houston trip.

My test results showed that my treatment appears to be working at the moment.  Everything was either the exact same or better.   We were so HAPPY to hear that.  All of my complications (numbness in hands and feet, low blood counts, exhaustion and being winded) were directly related to the effects of the chemotherapy.  The approach to dealing with this is to not have chemo so often.  Now instead of having chemo weekly, I have it every other week.  Believe it or not...I am pretty sure my hair is coming back in with the change in treatment.  I hope!  Our hopes and prayers are that the reduced chemotherapy will continue to maintain the cancer where it is, and not allow it to start growing again.  If this does not do the trick, then I'm sure my doctor has many other options to try.  I have great faith in his knowledge.  When he told me the news that my test showed some improvement, I immediately asked why my pain hasn't improved.  He told me that the location of my pain is probably due to an extremely damaged lung due to cancer, past infection, and inflammation.  The pain may never completely go away.  I keep pain patches on all of the time.  Some days I have no pain, and others it is so intense that nothing will touch it.  There doesn't seem to be a pattern of when and why it comes when it does.  My mom thinks that the days before painful times, I do too much.  Maybe so, I haven't made that connection yet.  Overall, I am better!  I'll take it with the pain any day!!  The next trip to Houston is in November, and I plan on getting more good news. 

Thanks to all of you for your prayers and continued support.  My hometown and network community have been wonderful.  Thanks!

God Bless!!

Thursday, June 30, 2011


How do I begin to put a title on this post that I'm writing you that has my heart broken for so many women that are benefiting from Avastin, and those who will never know if the drug would have been a successful weapon in their own fight.  There simply aren't words for such a tragedy as this.

I am so grateful that this drug was available to me and worked wonders for such a long period of time.  Three years of "feeling" cancer free while in stage 4 was nothing less of a miracle to my family and me.  To all of you that are faced with the fears of what is to come in your future treatments, my prayers will be with you each day.  This isn't the end, we must continue to fight for this drug to remain an option for breast cancer patients.  Hopefully and I pray that since medicare will continue to pay for the treatment, then other insurance companies will follow along with medicare and also continue to pay for the treatments.

To those of you that spoke in Washington on the behalf of me and others that couldn't be there, thank you so much.  My cancer at this point leaves me with good and bad days unlike the days that Avastin was working to keep the cancer at bay.  Now I am bald, (but that's no big deal this time) and feel the actual pain of cancer pressing against my spine.  Treatments are once a week and sometimes blood infusions in there as well.  I plan on continuing to fight and once again have that cancer free "feeling" I had for the past 3 years. 

I am willing to do whatever I can do to be heard on the behalf of all of you women that are being robbed of this needed drug.  If my voice and story could help, I am ready.

Please don't become  discouraged in your fight against cancer.  Have faith that things will all work for the best.  God, my family and friends have been so wonderful to me that encouragement is always with me, and I'm so thankful for that.  I  WILL get better!!! 

God Bless!


Tuesday, June 28, 2011

Please Pray for the Avastin Ruling

Today started the hearings in Washington that will decide the continued use of the drug Avastin for advanced breast cancer.  I would have loved being in Washington today with all of the women there fighting to keep this drug available for them, but I spent 5 hours at the infusion center today receiving 2 units of blood.  Not exactly what I thought I'd be doing when things would come to this point.

The only thing I can do for this campaign at this moment is to ask you all to pray that this drug remains available to these women that have been so blessed with the use of the drug.  Almost 3 years of my cancer life was spent while on this drug, and you would never had known I had cancer if you didn't already know me or I told you.  There were no side effects for me for such a long time.  I became very ill in Feb. that led to a one month stay in the hospital with pneumonia and a long recovery time at home, so I was unable to continue any treatment while my body was trying to recover.  When I returned to MD Anderson for follow ups, my cancer had spread to several places in the spine and a few other localized bone spots.  This was clear that my run with Avastin was at the end, but I truly believe that the three years Avastin gave me was a blessing and I'm thankful that I was able to have the drug as one of the weapons against this terrible disease.

Please when you say your prayers tonight, think of all the moms, friends, sisters, daughters and women that are going to be up all night wondering what the FDA hears from the panels and protesters.  Please pray that the drug will remain available for use and that this decision be a doctor patient decision, not a government decision.


God Bless!!


Saturday, June 4, 2011


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!!!! 

Friday, April 8, 2011

The Awesome Feeling When You Become Aware of God's Purpose

Life can be so stressful when things don't go the way you plan, but I'm a true believer that God has a reason for all things that happen in our lives, and that sometimes the purpose becomes apparent.  After many disappointments in my lifetime, only to learn that God's plans for me were far greater than anything I could have asked for, I have learned to understand that He will care for me.  God will put my interest first, and he loves me.  Obstacles often present themselves and I've been blessed to understand that God's hand is at work and how he can "fix" the broken is beyond any realm of earthly understanding!

June, 1997
Dewey had just graduated from the Highway Patrol Academy and he had been assigned to work in Marble Hill, Missouri.  I had just graduated with a teaching degree and the moment we learned we heard our location assignment, I began submitting applications to the schools in the Bollinger county and surrounding areas.  Most schools had already done all of their hiring by this point, so I knew that it would be difficult to find a position.

So here we were...the stress monitor would have exploded...at this point we had been married 10 years, but we haven't lived together in 6 months due to him being gone to the Highway Patrol Academy in Jefferson City for his training.  We were adjusting to each other, both starting new careers, I was trying to find a job, we were looking for a house to rent, trying to sell our house we were leaving... and the stress list goes on and on, but God took the best care of us!

All the time that these things were going on at once, I knew that I had a medical issue that needed attention.  I delayed it and put it on the back burner because the other issues were time sensitive, and I knew that the problem I had in my breast would still be there and I could deal with it as soon as we were able to get settled. (By the way...Don't try that method out...always put your health first!)

I know, I know...you are thinking, "Julie, Where are you going with this story?"  It is a lot going on to get you to the important parts, but hang in with me and you will see it come full circle.!

We found a place to move in, we got moved and were settled, and Dewey had a few weeks before his first Patrol "Duty" began.  I was still in the job interview process.  A job presented itself to me.  The perfect job!  Immediately I got myself presentable and my things together and drove to the school to hopefully get the opportunity to talk to someone with enough administrative "pull" to get my foot into the door for an interview.  Things went perfect.  The first person I met was the principal, and it seemed like we knew each other.  Before the visit was over, I was given a time for a formal interview that took place the following week.

Things were looking great.  Being a small area, and late in the year for a teaching job to become available (It was late June) I had good vibes about getting this job.  After the interview, I felt even better.  The principal all but gave me a key to the room.  He was presenting me to the board, he had no doubt that I would be joining their staff.  Things were going great. The school board meeting was coming up the next week and I would be given an official answer.  I felt certain that I had the job, but it was a long wait!

The night of the school board meeting, I didn't get the phone call I expected.  The following day, I waited, and waited, and around 10 in the morning, I got up the nerve to call.  The moment that I heard the Principal's voice, I knew.  A native of the small town was moving back and had applied after I had been interviewed.  She was given the job, and I understood that she deserved the position, knowing I would only be living in that area for a few years.

Knowing she deserved the position didn't make it any easier for me to be denied the job.  I wanted that job SO bad!!  I was upset and felt like I missed the perfect job opportunity.  Back to the stress of finding a job in an area that is so rural that "Mayberry"  would seem like a city.

Just a week before Dewey started his first day of being an official "Trooper", we decided to take a few days to get away and enjoy each other and try to absorb all of the changes and decide what we would do and where we would go for my health care.  (We lived close to Columbia, MO when my first breast cancer was diagnosed)  I'll never forget standing in the middle of "Silver Dollar City" when I received a phone call.  Great news!!!  I was offered a position with Meadow Heights school district.

It wasn't the job I had prayed so hard for, in fact the job wasn't going to be that dream job all new teachers imagine.  You know, the perfect brightly decorated room with neatly written name tags on each desk, and artwork lining the hallway of the classroom.  The job was a position as a PAT, "Parents as Teachers" educator.  I began working the same day as the other teachers started, and then I had to attend a training school in St. Louis for a full week.  My office was a 7x7 closet that a desk, phone and file cabinet could fit into.  Most of my job would be out on the road and to visit families that had children under the age of five.

It's all going to start making sense to you as you read on, and you will see God's hand on my life and his plans for me to get through some difficult times that were right around the corner.  I had no idea that major life changes were in the making, but God knew and he carved out a path that would make the changes as smooth as they could be.

As I stated earlier, Dewey was starting his first full duty assignment, and I was having to go to St. Louis for a week for training.  It was impossible for Dewey to go with me to St. Louis, and I'm sure that my parents insisted on going with me, but I wanted to go by myself.  I knew that I would be in classes all day, and that on my lunch break and evenings I would concentrate on finding an oncologist that would meet my expectations and that I felt comfortable with.  My goal for the entire week in St. Louis was to find a doctor.

I couldn't return to my previous breast cancer surgeon due to the fact that he was in Columbia, Missouri.  The distance required me to change.  In Columbia, I had a surgeon that specialized in breast cancer surgeries, and I also had a radiologist that administered my radiation, but I did not have an oncologist.  I felt that this time, I would need an oncologist.

Every break from class I would be on the phone either following up on leads or gathering information about different oncologist in the St. Louis area.  That seems like it would be easy, but time was also a factor that had to be considered.  Here I am with a new job, and I wanted a EXCELLENT oncologist, and one that would see me as soon as my class was dismissed that Friday.  (Yes, I'm somewhat demanding!)

I think it was on a Wed. afternoon and Kim called me and said I found your doctor, do you have a pen and paper near by.  I was thinking... "What, wait a minute, slow down, what are you saying?"  Kim had been told of this excellent oncologist that had much success with some other Sikeston cancer patients, so having heard first hand from the families of his patients, we felt like we were moving in the right direction.  Kim already had contacted them and they were waiting on my call.  I called, and the receptionist that takes new patients was kind and made sure that I was to be seen Friday at 2:00.  Perfect!

That trip to St. Louis for job training was my first eye opener to see that this trip was meant to be all along.  This was part of the bigger picture.

Back home friends and family were scrambling all over trying to get medical records, pathology slides and all the medical records that were to be found.  My dad was even going here and there to pick up lab blocks and slides.  Dewey met me in St. Louis for that first visit with what I feel is one of the greatest oncologist ever Dr. Frank Dunphy, who now practices and teaches at Duke.

That first appointment lasted at least 3 hours.  When we left, we had a scheduled date for my mastectomy.  Dr. Dunphy had things all lined out for my appointment that day, so that I could see the breast surgeon right then as well.  He is the type of Dr. that moves quickly, thoroughly, and precisely.  When he wanted something ordered or done, waiting was not an option, and it appeared as though the entire medical team at St. Louis University knew him and had only the highest level of respect for him.  I said all of that to say, from the point of my first appointment to my mastectomy was about a week.  Many test and additional biopsies were crammed into that week as well.  I knew I had found the oncologist I was looking for.

Back to the job situation.  One of my close friends worked at the same school district and this made that first teacher orientation day so much better for me.  Just knowing one person in a crowd of total strangers makes all the difference in the world.  The comfort we feel from one another is often gone unnoticed until we are in a situation that we are going into something alone.  Melanie was so great to me.  She took me under her wing and introduced me to the kindest people that would become my friends as well.

She was sure to introduce me to the music teacher.  The music teacher had recently finished all of her breast cancer treatments.  It was the strangest feeling at first, because as we began to talk about our cancer, we quickly learned that we had so much in common with our diagnosis and protocols that I'm sure as I was finding comfort in having someone I could turn to, while she may have had the feelings of.... oh no, I'm not ready to jump into this again.

Ready or not, she was there for me.  She was able to let me know what to expect after my mastectomy, and how I would feel after that first chemo treatment, and how it feels to when your hair begins to fall out.  She was with me every step of the way.  She became my saving grace.  I don't know how I would have managed without her.  We became close friends and God knows how thankful I am to him for bringing her into my life to support me and comfort me.  I always had the support of family and friends, but having a new friend that had just finished a journey that I was just beginning was the best mental and physical medicine I could have received at that moment in my life. 

Do you see the picture now?  I didn't get the job I prayed for, instead, I was blessed with something far greater.  This job allowed me to work my own schedule.  I had to meet my job requirements on meeting with my families in the community , schedule various events for the young children, paper work, and follow-ups.  Unlike a classroom teacher, I was allowed to schedule these appointments and work during the times that I felt well.  The week I would have a chemo treatment, I wouldn't schedule any appointments because I knew I would be sick.

Because I was able to fulfil my job duties, I never once lost a paycheck or was docked due to not being at the "school building", and I was able to take my paperwork home to finish. This was unbelievable how well this worked out for me.  I couldn't believe the blessing of being able to do my work on my good days and not have the stress of loss of income.  I was able to complete my job for the year and my goals were met.

God knew my my wishes of that job teaching first graders, but he knew what would be best, so he placed me into a position where I would have physical and mental support of a caring person that would help me each step of the way.  She was definitely a "God Send" because I utilized her and leaned on her to get me through the entire mastectomy and chemotherapy saga of my life.  Having a friend or someone close to your age that has actually been through what your are embarking on, is the best source of support possible, next to God.

Chemotherapy ended that year in February, and by March, I received a phone call from from the job I originally wanted so bad.  This call wasn't for me to come in and interview, it was to offer me that first grade position.  The girl was moving away and her position became available.  I was so excited.  At that point I realized, "Wait a minute...this whole time...this was you God."  I realized that it had all come full circle and that most everything that happens in life has a purpose.

February 23, 2011
One day shy of being at Missouri Delta Hospital a full week.  Sick!!,  never in my life had I felt sick to this extent.  Everyone had left my room and Tina was the only one with me until Dewey came back to stay through the night with me.  (Usually when I've been hospitalized, I stayed by myself, but we all knew, including myself, that I was too sick to be left alone)  I called Tina over to me, I didn't have the energy to roll over to be facing her chair.  She comes over.  My voice is faint, and terrible cough spells after a few words.  Tina leaned down to hear me, and I told her, "Tina, I always thought that I would be ready for this, and I have prepared myself for this moment, but I never thought I would live so long diagnosed with stage four.  Rebecca is 11 now, and I'm not ready for this, I can't leave her at this young age.  I can't , I can't.  I've never felt this sick and I am scared.  Please talk to Rebecca and see what she understands and help me to help her if she needs to talk to someone.  Pray for me to continue living, and pray for her, she needs me."  Tina was strong and told me not to worry, that she would do that, and that I was going to be fine.

The next day, around mid afternoon, Kim was in the room and we had done some walking, because that's what we thought I needed to help my body heal.  I was able to walk about 2 yards, then I had to stop and let my breathing catch up to beating of my heart.  We used a wheelchair to get me back to the room.  A few hours later a great friend of mine that is a physical therapist came in the room about the same time as the respiratory therapist, (which is also a good friend)  I'm not sure if I had my breathing treatment, then walked, or the other way around.  I just remember that when I walked, I was determined to make it and I was going to be strong this time.  I thought if this is what I have to do to improve, then I'm pushing through this.  I don't remember that walk being difficult, and it was twice as far as the one Kim took me on earlier.

This is the beginning of my body going from sick to critically sick.  My o2 saturations were going down.  Both therapist stayed with me, working hard to get me back into the 90's, but it wasn't happening.  My respiratory therapist called one of my doctors that seemed like Superman because he was in my room in what seemed like just seconds.  He didn't waist any time and moved me to the ICU to be put on a CPAP.  At the time I thought he was talking about a ventilator, and I was not ready for that, the thought of that made me crazy.  Once I got into the ICU, things went fast.  They started putting me on the CPAP, and I had to stop them to ask, is this what you are talking about doing.  When I found out that it was just a tight mask that would aid me in breathing, I was was so relieved.  I could handle that.

The next thing I remember is waking up Friday sometime and my doctor telling me that we were going to have to transport me to St. Francis ICU in Cape.  He wanted me to be seen by an infectious disease, and a pulmonary doctor.  He looked at me knowing I would hate hearing the next words, and he told me it was time that I be put on a ventilator.  No way, I thought.  Not while I'm awake.  I'm typically a tough patient that can sit through any medical torture without flinching, but for some reason I had a phobia of the vent.  Sedation was necessary, and most difficult, because, I would fight through the sedation.  I remember small bits and pieces of this moment, but was told by many that I was fighting like a wild horse would fight a person putting a bridle on him.

At one point, I believe my believe my blood pressure either dropped or my body was falling.  But this is true and I remember it as vivid as ever.  Everything went black.  No color.  Then in the top left hand corner I saw a door.  It was shut, the only way I knew it was a door is from the powerful light coming through the cracks of the door.  The light was bright and vivid, and shined through all four sides of the door and through a keyhole.  At that moment my thoughts exactly, "Oh, I know exactly what that means, and I'm not ready for this, I have an eleven year old that needs me and I can not go there yet".  No sooner than I thought that in my mind, I was back into the awareness of all that was going on around me.

Dewey and Mom and already left to get Rebecca out of school and meet the ambulance at St. Francis.  All the scary stuff happened after they left. They were assured that it was ok to leave, I would be loaded shortly and we would arrive at Cape around the same time.  Some complications came about with the ambulance being able to support the ventilator, so the decision to fly me to Cape became the options for the doctors to take.

My Mother keeps telling me that had she known that, she would have never left my side.  But I think if things appeared to be bad to my friends, then they would have seemed that way to my family as well, so I'm glad that they went on and didn't have to have extra stress and concerns to deal with.

This blog goes from 14  years ago to now, just to show you a few times that I could feel God's work through others and how what we do is often God working through us to help someone else.  The day I became so ill at Sikeston hospital, the respiratory and physical therapist stayed way past their work hours to see that I was well taken care of and my o2 sats were stable.  I don't know what would have happened had they not stopped in at that time.  My nurses were great, but I was on a regular floor at the time, so I wasn't on monitors to alert the nurses of vitals getting worse.  I am thankful that my friend Kim and my two friends that were doing there jobs came when they did.  It was all meant to be.  I truly believe that.

My attention span is very short, and I'm still a long way from complete recovery.  I'm still on oxygen and I still have a good case of pneumonia, so it is important for me to stay out of crowds until that is cleared.  It has taken me over a week to write this blog entry, because I get tired and have to quit.  I feel like I'm at a finishing point for now, and I will continue to tell you my story if you seem to be interested.  I put these blogs on FB to let you know that I've just posted again, but I have not personally been on fb since I've been home but for about 2 minutes one day.  It's just too overwhelming to me right now. I love all of you.  I'm thinking of a way I can show "YOU" how much I appreciate you!  When I get well, I will be available to do something nice for everyone.

The one thing I want you take from this post is that when you think your life is having to go through terrible times, remember, God has a plan for you, and this is a stepping stone to greater things.

Love You All, God Bless!

Tuesday, March 29, 2011

"It's My Fault Julie!"

Sunday, March 27, 5:30 pm.  This is the first time in over a month that Dewey and I were alone.  Someone has always been with us since that first day that I went into the hospital.  It was nice having time to ourselves.  We talked and talked about what had just happened and couldn't stop talking about the whole ordeal  This is unusual, because Dewey simply won't talk about anything that has to do with my health or his work.  His way of dealing with my health is to move forward and act as if there is nothing wrong and to talk about any bad reports or feeling bad is moving backwards in his mind.  I guess he thinks that if we don't talk about it, and pretend it doesn't exist, then life can continue as normal. 

So, I was happily surprised when he started telling me all about the month I lost while being sedated in the ICU.  He talked and talked and told me all sorts of things that he, my mom, family, and friends had to endure.  Wow!!! What a roller coaster ride for all of those waiting hour by hour to hear more news on a diagnosis.  Dewey told me that I was diagnosed with everything under the sun.  It was to the point that Dewey himself was researching various pneumonia and he would ask the doctors, "Have you checked this, or that pneumonia?   I'm sure he probably wasn't even close to pronouncing the word correctly, but he had done the research on what it was, how it is contracted and what the diagnosis is.  The doctors assured Dewey that they had checked these diseases and I was negative for all of them.

At one point, three of the doctors gave my family no hope, while two gave them hope.  Who and what to believe became difficult for all of them.  So I ask Dewey, "How on earth did you know who to follow?  and who did you believe"?  I'll NEVER forget Dewey looked me straight in the eyes and said, "Well, Julie,  I followed the Lord!  I believed in him"!  My heart sunk as he said those words.  I was so proud of his faith in God, and that during this most difficult moment of his entire life, he turned and trusted God and didn't give the doctors a second thought.  Wow!  What faith!  We should all follow the Lord.  He really is the only one that completely heals.  His powers are greater than anything or any force that we have here on earth, and he is always on our side and ready to fight for us.  That is the most amazing medicine of all!!

Then Dewey looked up and straight into my eyes with a little smirk in his voice and he said, "Oh, by the way, it't my fault Julie".  "What do you mean it's YOUR fault, what's your fault?", I responded.  "It's my fault that you had pneumonia, and a bad case of pneumonia.  It's all my fault!", he said.  "How could this be your fault?"  I didn't understand.  With a strong, yet fragile voice, Dewey said, "After the doctors said that your lungs were full of cancer, and they basically gave us no hope at all, I went to the chapel to pray all day long".  He said, "I've never prayed so hard and so much for something in all my life!  I prayed that you didn't have cancer, that you just had pneumonia, a really, really bad case of pneumonia."  I just looked at him with a strange look on my face.  Then he said in a fun, childlike voice, "Yep, Julie,  It's all my fault that you had pneumonia, sorry about that, but you get what you pray for, and that's what I prayed for, so it's my fault".

I don't know that I will ever hear or see cuter words and expressions come from my husbands mouth than when he shared that story with me.  I had no idea the trama that they were having to deal with while waiting to learn what was wrong with me and hoping that I get better soon.  I am so thankful that Dewey is sharring his side of the story with me.  It is important for me to hear these stories from as many people as possible that were sharing this moment of change in our life.  Some of the stories that have been shared with me by Dewey, Mom, and friends make full sense to me, and I'm able to explain to them why I would move my arm certain ways, and once I woke up why I said some of the things I said.  Most every motion made and word spoken had a purpose and wasn't involuntary. 

But to you Dewey, thank you for the many prayers for me to have bad pnewmnia...I'll take that anyday over cancer.  Had the doctors told you that standing over my bed where I could have heard them, I probably would have KICKED the fire out of them, because I even knew this wasn't cancer I was dealing with. 

Dewey said he no longer takes what Doctors say as a final diagnosis.  When Tina found out that the doctors had everyone upset over the cancer diagnosis, she pulled a nurse out into the hall and wanted to know why any doctor would tell a family that simply by looking at an xray.  She said, have the taken blood yet?  Tissue samples? Pet or Cat Scans with contrast?   All answers were NO.  I'm not sure if it was because of her persistence or not, but the doctors then ordered a biopsy of the lung tissue, and guess what?!?!?!   It came back negative.  One of the doctors came to Dewey and those waiting for me he said loudly, "The biopsy was negative.  There is NO cancer".  I haven't asked Dewey how he responded to that news, but if I were to bet on it, I would say he literally broke down to the ground and cried and cried while thanking God over and over.

I am so proud of Dewey.  This has been a difficult month and will continue to be difficult as things are never going to be normal as we knew normal, but we are looking forward to a new chapter in our lives, we just hope that the changes come softly and that we can transform without extra stress and with only good intentions.

So many of you were there with me or in the waiting room with family.  If you have stories to share with me, I would be so appreciative to you if you would write down your memories of what was taking place.  I don't know if this is normal or not, but I want to know what happened each day.  I slept for 3 weeks, and I'd like to know what I  missed.

Eventually I will share with you what was going on in "My World" while I was sedated for three weeks.  I have my own interesting stories to share with you.

Thanks for reading!
Please share my story with your friends.
Until Next Time,  GOD BLESS!

Sunday, March 27, 2011

No Words!!!

Some things that you want to express are far greater than the mind can grasp and there are no words that can explain the feelings.  This is one of those moments that I want to express my gratitude and love to everyone in my community and beyond, but it's a perfect circle, no beginning, no ending, just a forever continuation flow of compassion, kindness, love, and concern.

Dewey would stand by my head and talk to me. "Julie, YOU are So loved!  Wake up, I want to tell you about all of the people that have come to see you, and have called.  I love you so much and you are doing such a great job!  I'm so proud of you, you have so many here that want to see you, you wouldn't believe how many people are here for you.  Can you wake up for a little bit, come on Julie, you can do it, just open your eyes.  You are doing so good, I love you!" 

I remember several occasions where Dewey would be talking to me saying the kindest things and wanting me to respond to him.  At the time, I tried to open my eyes and respond, but the medication that I was given to keep me sedated was so strong, that even though I tried and tried to respond, I'm sure that Dewey and my Mom couldn't tell that I could even hear them.

The doctors had me in an induced coma so that my body would be able to focus on healing.  Dewey said he looked forward to seeing the "white medicine" bubble because he knew there would be a small window of time that I may be able to hear him, open my eyes, or respond to him before the nurses would administer more diprivan.  I do remember the words he would say to me, but I was confused and didn't understand what was happening around me, and before I was able to put it all together, I would be completely sedated once again.  Thank God for sedation, when tubes are going up and down, in and out, sedation is the greatest thing ever!!

During one of these moments of Dewey talking to me, my attention peaked when I heard the words "Michell is on her way back to see you again Julie!"  I wanted to open my eyes and jump up and down in excitement.  I love my family, and we are too far apart, and just knowing she would be back meant so much to me.  Then Dewey went on to tell me, "Julie...Michell and Amy are organizing a benefit for you so that the stresses of our bills can be eased since you won't be able to work for a while".  I heard those words so well.  That was the first I heard of what was to turn out to be an event of love that is far to great for words.

Each memory of Dewey talking to me from that point on was him expressing the out pour of love and support that the community, family, friends, customers and even complete strangers had been snowballing.  He wasn't aware that I could understand his conversations with him, but during those moments of the medication finishing, and a new dose beginning, I was able to understand him perfectly.  Confusion was still in the picture, because I'm not sure at that point if I knew where I was, and why.  But I did know that Dewey was there for me and that he assured me that everything was going to be okay and that life as we had known it would be less stressful.  He let me know that I wouldn't have to stress from work anymore and that we would be sure to take care of me before worrying about bills and our financial burdens that various life and health situations had landed us in.  I wanted to open my eyes, smile, squeeze his hand, just anything to let him know I understood and heard him.  As weird as this may sound, hearing those words from him took a burden off my back right then at that very moment.  I'm sure if I could go back and see my vitals shortly after him letting me know this, I would find that all of my vitals improved.  Just knowing the stress would be lifted gave me great comfort and a new hope to continue fighting for. 

There is so much to add to this particular topic, that I will have to add on to it.  What I have written here has taken me two days to write.  Please be patient and know that I want you to hear all of it.  I'm still very weak and sitting at the computer typing is a difficult task still, but I'm excited to share my story, and it is good for me to blog both mentally and physically.  My fine motor skills are improving, but my attention span is that of a 2 year old.  Please continue to follow and share with your fb friends.  My testimonies are incredible and you will see Gods heart and hands at work.  He is amazing.

Before I close for the night.  I can not possibly find the words to express my gratitude to all of you for the love you have shared with me.  I have heard wonderful stories of the dinner, auction and entertainment.  I'm in a state of pure euphoria.  I've  been to funerals where everyone would say, "Wow!,  he/she  would be so happy to see how many people loved them and are here for them!"  Even though my body isn't healed enough to have been at the event, I 've been gifted with the knowledge of love and support that has come my way.  What a gift.  A perfect gift knowing that love is all around me.  I thank you for all the acts of kindness, love and compassion that you have shown me and my family throughout these difficult times.  I am so prould to be part of a community that pulls together to work towards a common goal that is focused on love and support.  Life IS good!!!  Even when there are no words!  Love comforts!  Even when I can't find the way to respond when under so much sedation, and tubes down the throat, just knowing and feeling the love....It comforts all.

Until Next Time.
God Bless!!


Wednesday, March 23, 2011

My Story...What a Blessing!!

Oh, how I've missed blogging to you.  I'm not sure how long I'll be able to blog today because my hands are already shaking, but I'm going to try and blog each day to let you know my story and latest journeys and what's to come in the future.

When I began this blog, I said it wasn't about ME, but for now, these post will be about me and the past month.  I hope you find courage, comfort, peace, and a stronger faith in God, friends and family through my experience

Before I begin I want to Thank God for blessing me with a wonderful family and faithful friends.  Your prayers got me through this, and for that I am forever grateful.

So the story begins...

Exhausted!!  Months of pure exhaustion that was only getting worse.  Sleeping in between photo shoots became a  normal part of my daily routine.  Tina was coming to the studio to help me make a backdrop for the New Madrid homecoming dance that we were to photograph in a few days.  One more photo shoot, but I had 3 hours before it began.  How I would survive to last at the studio another 3 hours, I had no idea!  I grabbed my pillows and cover, locked the front door and was sound asleep within seconds.  The next thing I know, Tina is at the studio with me and I remember telling her that there was NO way that I could work on the backdrop, I simply didn't have the energy.  Tina helped me with my last session and the second they left the studio I looked at Tina and said "I think I need to be in the hospital."  We left my car in Charleston, and Tina took me straight to the hospital.

Just as I thought, that was exactly where I needed to be.  At that time I had pneumonia in my left lung.  This was on Thursday, Feb. 17.  My appointment in Houston was only 5 days away, so I thought, "Oh, I'll be in here over night, possibly 2 nights, then I will continue with my plans to fly out of St. Louis to Houston for my routine check-up.  Yeah.....right.....!!!!   Things didn't go as I had planned.  God had other plans for me that didn't involve Houston at all.

For the privacy of my doctors and nurses, I won't mention any of their names during the blog, however it goes without saying that I had the absolute best care that a patient could possibly receive.  Both Missouri Delta Medical Center in Sikeston, and St. Francis Medical in Cape had incredible doctors and nurses.

This is just the surface of my story, please check back tomorrow as I plan on sharing my entire story over time.  It's going to take time and I believe you will find parts of it amazing, and other parts may put you to sleep.  (no punt intended)

Until Next Time!!! GOD BLESS, and THANK YOU!!!

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

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


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!


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!


Friday, January 14, 2011

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

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.


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)


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!