Oh, I am so sorry. Please excuse my oh so messed up body.

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As I lay down in my bed, I am out.  I almost always hit the pillow and it takes about three minutes and I am asleep.  Often times, parents of little babies and young children teach them bedtime by setting a routine.  Baby gets a bath, read to them, sing one song, and hugs and kisses.  Well, (you can call me weird, but I already know that) I believe I have done this with myself.  Of course I have the getting ready process.  I will spare you that.  It is not as simple and soothing as the babies’ routine.  But I hit the pillow and I start running a list through my head.  My two most popular lists:  1.  What are the decoration changes that I want to make to my house?  2.  What would I change about myself if I could?  Fifteen.  No fourteen.  There are fourteen things I would change. 

1.  I wish my hair was a little thicker.  2.  No contacts.  Perfect vision would be nice.  3.  No scars around my neck.  4.  No itchy back.  That was right.  No itchy back.  See?  I am a lucky one in a million billion that has a rare condition within a rare condition of MEN2A in which my body deposits protein on the top part of my back.  It drives me insane!  It itches all the time.  All the time.  Almost daily, I scratch it until it bleeds.  I have done this since I was a baby.  I wish I did not have that.  5.  Stronger arms.  I work on it.  I do.  I go to the gym when I can and lift weights or as of now, or recently, I have been trying Yoga.  But I’ve been a little weak lately so I don’t push it by going to the gym.  So, I wish I wasn’t sick.  Wish I could go to the gym.  And wish I had stronger arms.  6.  No scars on my stomach.  7.  No stretch marks.  Nah.  I look at those and wish they weren’t there and then I remember why I have them.  Actually, call me crazy, I’ll keep those.  Worth that memory.  So, 7.  Thinner legs.  (Reinsert gym explanation here and add to it that I do not eat sugar.  Ok.  Yes, I do eat fruit.  And yes.  I do know that carbs turn to sugar in my body.  Restate that.  I do not eat desserts.  Why?  There is one reason to eat desserts:  They taste good.  There are four reasons not to:  sugar makes me gain weight, not good for my teeth, makes me, and everyone, sick more often my weakening my immune system, and lowers my energy.  Perhaps that was all too much to say within parenthesis?) 8.  Perfect teeth.  I hope you think my teeth look perfect, but the front two have crowns from chipping them on the swimming pool.  9.  No veins on my legs.  10.  Better singing voice.  (if I could insert a clip of me singing here, you would agree)  11.  No scar on the back of my leg.  12.  No scar on my left arm.  13.  No Addison’s Disease.  14.  No cancer.

There is my list.  Sure.  Everybody has a list.  But I do try to be really content with my body, but these are things I hate.  I really do hate.  And about 12 out of 14 (at least)  are here for life.  Nothing I can do about it.  About half of those nobody sees.  And the other half, I try to hide most of the time.  Prime example, You won’t find me in any singing group or trying out for American Idol.  But, I go to buy life insurance, and I can’t.  I go to the doctor for allergies and I have to continue my medication list on the back because it won’t all fit in the lines provided, and then the doctor wants to send me for scans and tests and chat extra long because of my history, but excuse me doctor, I have a sinus infection.  But they don’t want to give me anything for that.  And then I go to pick up Prednisone at the pharmacy for the one hundredth time in a row and the pharmacist feels the need to tell me that I shouldn’t take so much because of the side effects.  Thank you.  I know them well.  But the alternative isn’t so good.  It’s death.  And then I read an article in the newspaper in the medical section from a doctor that says no one can survive with both their adrenal glands removed.  Well, he should do some research, or I should introduce myself because I am going on ten years now.  I try to find light in my rare condition.  It is a little neat when the student intern at Duke is so excited over meeting me and reviewing my case that he can not hide his excited giddiness.  It is kinda cool to be able to carry on a medical conversation, using all the right jargon, with friends that are doctors and surgeons, but if I got to pick, I would choose a different claim to fame.  What can I really do with:  A really extremely rare form of MEN2A, and always being the exception even within those rules of the disease.  Pretty cool to be the exception in the medical handbook or the specialists conference?  Ehh.  

Well, I am asleep by now.  And I never go through the explanations with myself while I am laying in bed.  But if I didn’t have that, I”d be pretty pleased with myself.  If I didn’t have all of that, It’d be great to sit up in the morning and be able to see what’s going on without popping in those contacts.  And I’d probably join some band, just for the fun of it.  And I’d sing to more people that just my seven year old.  And my husband.  And my sisters.  And anyone else I get comfortable with.  And anyone else who it around after I’ve had a drink or two.  And I’d wear skirts, not just in the summer time when I’m outside, but also when it is a little chilly outside in the spring and fall to show off my legs.  And I would be in and out of the doctor with my sinus infection medicine.  And I wouldn’t always scratch my damn back.  And, who knows?  Maybe, I would be a whole lot less content.  And maybe I would have less joy.  And maybe I wouldn’t appreciate my family and the days that I’ve got.  Because it isn’t really myself that makes me happy anyway.  So, ehh, I’ll just keep it all.  So, I am oh so sorry.  Please excuse my oh so messed up body.  That’s just me.  

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The Journey Begins

Christ is my author.  He wrote my life.  God makes no mistakes.  I was first diagnosed with cancer the summer of 1996.  My cancer story does not begin here.  I graduated from high school.  I received my degree in Elementary Education.  I married the man of my dreams.  I had a baby.  Not just any baby.  A miracle baby.  The most amazing little human being that I have ever laid my eyes on.

The nurse laid her on my stomach and immediately all the pains of childbirth disappeared.  She was everything.  Michael Phelps on the starting block.  Chocolate chip cookies in the oven.  The sun rising.  Christmas Eve.  She was the possibility of everything.  I would give it to her.  I was raised in a family with eight children, I babysat, I nannied, I had a degree in Elementary Education and teaching experience behind me.  I thought I had this kid thing down pat.  But when my eyes first fell on her, my whole entire world got flipped upside down.  From the moment she came into our lives, her Daddy and I worked harder, we researched with intensity, we read more, and we did everything to better ourselves and the world that surrounded her.  We were about to learn that we were completely out of control.

Prior to Madison’s birth, we researched.  We had been given the green light to try to get pregnant. However, with my medical past, it would be incredibly hard to get pregnant and once I was pregnant, it would be incredibly hard to keep the baby.  God had different plans, I got pregnant right away with my little miracle baby.  When Madison was three months old, we visited a genetic counselor.  We were not prepared for what we were about to hear.  We had been told that Madison had a 50% chance of inheriting my cancer gene.  We had been told that if she inherited cancer, she would have her thyroid removed and that would be the end of the story.  Well, on this day, we held our three month old miracle in our arms as the genetic counselor told us it was not that easy.  She had a 50% chance of inheriting my cancer gene.  If it was positive, she would have surgery to have her thyroid removed.  However, that would not be the end.  She would spend her life having routine scans, blood work, and the label of cancer hovering over her entire life.

No.  I had given God my life.  I had accepted cancer in my life since the age of 15.  He could not have my daughter.  He could not have my baby.  No God.  This was too much.  He was asking too much of me.

James (my husband, Madison’s Daddy) and I prayed.  We prayed every morning.  We prayed every night.  We prayed during the day.  We prayed together.  We prayed alone.  I was angry.  I was angry at God.  This was my daughter.  She needed me.  I would protect her.  I would give her everything.  I had trusted God with my life.  I had defended my faith to the bitter end and now I questioned everything.  Was it all real?  Was there a God?  Did he hear my prayers?  Could he change anything?  Did he love Madison?  I wanted so much to claim control.  I wanted so much to be in charge.  I wanted so much to walk away from my faith and say, “I’ve got this.”  But I had nothing.  I could do nothing.  I was completely helpless.  I fell to my knees.

James and I placed infant Madison on our bed.  She was laid upon the altar.  We literally fell to our knees.  We prayed.  We begged.  I cried out to God and I begged him for the health and for the life of my baby.  “God, I need you.  You are the only one who can save her.  I can do nothing.”

I learned to pray.

And this is where my cancer journey began.  It did not begin when I was fifteen and I was diagnosed with cancer.  I could have given that.  I could have given myself.  I could have given my life and never trusted God in this way.  It was here, when I had to lay my daughter on the altar and say, “God, she is yours.  She is not mine.  I trust you.  I trust you with my baby.  I trust you with my everything.”

We did not get an answer.  We played with our precious baby.  We cared for her every need and every desire.  I placed her soft cheek to mine and sang softly of the love of Jesus.  I was singing more to myself than to her, reminding myself of God’s promises.  I began to realize that as much as I loved Madison, I was only getting a tiny glimpse of the love that God has for me.  I am his daughter.  He held me in his arms and loved me just like I love Madison.

Why then?  Why would he give me cancer?  If I am his daughter, and he loves me, why would God give me cancer?  I looked at my life as a parent.  I took Madison to the pediatrician to get shots.  She cried.  It hurt.  She had no idea why I was letting this happen.  I allowed it to happen.  Why?  Because I love her.  I allowed this hurtful thing to happen because I love her.  Even though she did not understand it, it was the best thing for her.

I learned just a little bit more of how much my Heavenly Father loves me.

Time passed, we continued to pray.  We were waiting on results from the genetic counselor to see if Madison had tested positive for the gene.  It was a simple blood test, but the results took time.  Two months had passed and we still had no result.  One night, as James and I crawled into bed, I turned to James, “She is going to be ok.  God told me she is going to be ok.”  I had not heard an audible voice, but he spoke directly to my heart.  As I started to pray, he said, “OK. I will answer your prayer.  Madison will be healthy.  Now, pray for something else.”  I had not gotten the results from the doctor, but I knew, my daughter was healthy.

Two more weeks passed, then on July 31, 2007, I received the call, “Madison is healthy.  She tested negative for the gene.  She has no more chance of getting cancer than the general public.  You never need to see a doctor about this for her ever again.”

Those were the hardest two and a  half months of my life.  But I learned Madison is not mine.  She belongs to God.  And he is a much better parent than I am.  Not only can he give her the world, he can give her a perfect heaven.

And this is where my journey begins.  This is where I learned what real hurt is.  This is where I learned real fear.  This is where I learned to trust God.  I learned to pray.  I learned I am not in control.

My name is Caroline.  I have cancer.  I have battled an extremely rare form of MEN2A cancer for the last 18 years.  I travel frequently from TN to Duke University Hospital in NC to see doctors and specialists.  I have scans.  I have blood work.  I have been left with Addison’s Disease.  I take lots of medicine.  I have a medical alert bracelet.  I get sick.  I crave salt.  I have scars covering my neck and my stomach.  I have a scar on my arm and on my leg.  My back itches.  I have a husband that loves me.  I have a daughter that needs me.

My name is Caroline.  I have cancer.  I have God.  I have a beautiful life.