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!!
Julie

Thursday, June 30, 2011

Untitled

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!

Julie

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.

Thanks!!

God Bless!!

Julie

Saturday, June 4, 2011

Updates

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

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

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

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

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

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

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

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

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

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

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

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

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

God Bless!!

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

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!