Sunday, May 13, 2012

The Queen

You've seen the advertisements all week... Mothers Day.  "Give your mother something she would love"  Flowers, Jewelry... the list goes on and on.  I really hate how they commercialize holidays, taking away from the meaning of it.  Mother's day should be a day to honor your mother, to tell her how much she means to you.  You don't need material things to do that.  So this is one of the ways I can show my mother how much she means to me a 1000 miles away.

Dear momma,
Growing up I was always considered a "daddy's girl,"  but secretly looked up to you.  I'm guilty of not telling you enough how important you are to me, and how much I love you.  Sometimes words fail me, or I take for granted that you already know how I feel.  You are my rock and the person I strive to be like.  Having children of my own, makes me really appreciate all the sacrifices you've made for me and my sisters.

You are an amazing woman.  Full of love and strength.  I cannot remember a time when you were not by my side.  People say I am a fighter because I've been through cancer and survived.  To me you are the true fighter.  Staying with me and fighting right beside me.  Never giving up when the doctors just told you I was a "lazy" baby.  You knew something was wrong and because of your determination they caught that I had cancer.  To me without you, I wouldn't be here today.  You gave me the strength to endure all my back surgeries.  I remember after several of my surgeries, waking up from anesthesia and seeing you crying.  Dad saying that you were so upset seeing me in pain. I knew that you would trade places with me in a heartbeat if you could.  And for that I am grateful.  You have had to fight your own battle when you were diagnosed with breast cancer.  I was so scared, I couldn't imagine a life without you in it.  You however made chemo and radiation look effortless, even though I know it was no walk in the park.

You have sacrificed having a life outside of the home so that you could raise us.  The queen of the house, you ruled the house with compassion and strong values.  You've instilled wonderful life lessons that I won't soon forget.  When I am having a difficult day with the girls I stop and think about what you would do.  If that doesn't work, I call you and say "help" ;o)

So thank you!  Thank you for being you.  Thank you for being the best mother in the world.

I love you!

Sunday, April 29, 2012

You can do it.

One of my pet peeves.. Hearing someone say they can't do something.  I just want to shake them and say "get a clue, you can do whatever you put your mind too."  Cliche I know, but the honest truth.

"I think I can, I think I can, I think I can."  My favorite mantra in the morning.  Willing myself to get out of bed is a daily struggle. The sounds of "momma, momma" or my favorite "get up lazy bones" is the final push I need to roll out of bed.  If you know my story you would say "oh Amber's back must be hurting really bad today," but guess what you'd be wrong.  Or well not wrong cause yea it does hurt, but that's not the reason I struggle to get out of bed.  You want to know a secret?

 I'm tired.  Ha, you say who isn't, that isn't much of a secret.  Oh how I wish it was just normal: the kids have been up all night, I spent all night drinking, or whatever else the silly reason is..  But for me, not only do my muscles work extra hard to hold this gorgeous body upright, but my lungs only function at 30%   Imagine you are taking a deep breathe, breathing in and out.. but  now you can only breathe a third of that air in.  Taking shallow breaths, in out in out... Getting light headed yet.  Two perfectly healthy set of lungs, but no room to expand.  My lovely twisted spine squishing them.

But this is my life, and I haven't dropped yet, so something must be working. You'd be amazed by how well the body learns to adapt.  You know I once had a cardiologist tell my parents when I was a teen, that I wouldn't live more than 5 years.  Once the lungs stiffen up, the heart has to work overtime, an overworked heart means a very tired heart.  A tired heart means a dead me.  Here I am though.

Now I'm not really shocked that another doctor was wrong.. I've lost count on how many didn't really know what they were talking about.  I figure there is got to be a reason why I'm still around.  I don't know what that is, but I'm just thankful.  A couple of years back, I wrote a "bucket list."  I know bucket lists seem to be a viral sensation these days.. but back then I just wrote it for myself, a reminder of all the things I would like to do and can do.  I've been lucky enough to cross so many off my list.  I've danced, kissed in the rain, I've stayed up all night to see a sunrise, I've gotten married, I've had not one baby but two.  I wake up every morning, and breathe. 

I may have only 30% of my lungs but I can still chase a 3 and 1 year old.  I may not be the fastest, I maybe huffing and puffing at the end, but I promise you this, my girls will be laughing and having fun.  I will do whatever I have to, and you should too.  I don't want to hear I can't.  If you must whine and complain, tell it to someone else, because hunny I don't care.  You will get no sympathy from me. Like I tell my 3 year old daughter, "suck it up buttercup, you can do anything."

Sunday, April 22, 2012

Close your eyes and listen

April 17th... the day my Uncle Doug passed away.  It was the one year anniversary a couple of days ago.  I could not find the motivation to write a post until now.  You see to me, every day is the same.  I don't miss him more just because he passed on that day, heck my older sister feels like he truly passed the day before.  To me its only a day to count how long he's been gone.  It does not measure my sadness.  I do not think of him any less on the other days.  He is always on my mind. Not a day goes by that I don't think about him in some way.  Something said or seen reminds me of him.  I miss him terribly.  I wonder if he's happy where he's at, I wonder if he looks out at us from time to time.  I'm not sure what heaven entails, but I do know that one day I will see him again.

Now some of you who do not know me, might be like "why is she so sad about her Uncle.."  He just wasn't an Uncle.. he was a second father.  My dad and him were twins.  Inseparable.  He lived next door to us for as long as I can remember.  When my dad couldn't take me to cheerleading, or to my friends house, he was always there.  The numerous times I was in the hospital, I could always count on him to keep me occupied.  We would sit and talk about life, about murder, lol we loved the forensic shows.

He was such a giving person.  He loved kids.  Months after I had MaKena, Alex was working overtime, and I was stressed out.  My Uncle came down to Louisiana and lived with us.  He helped out so much.  I remember this one time where we were shopping and a lady thought he was my husband, MaKena his daughter, lol.. the look on his face was priceless.  Or the time where we actually got him to wear a suit for my wedding.  I remember his maroon fish sweatshirt, or him talking about being superior because he was left handed.  He would be so proud to know MaKena takes after him.

People say that the pain, grief, gets easier as the time goes.  I can honestly say it does..  I don't bust out in tears as much.  I can now think of him and the wonderful memories and hold a smile on my face.  But there are still times when I am caught off guard.  Like when my 3 year old daughter says "I miss Uncle Doug," "Can we go to heaven and see him now,"  "where is he, why isn't he with papa."  Those are the tough times because its hard to not break down, its hard to explain to a 3 year old.  She doesn't understand why he can't be here... and to be honest some days I cannot understand why he's not here.  I went and seen the Band Perry the other night and totally lost it, when they played "Amazing Grace" expectantly.  I haven't heard that since his funeral.

It's hard thinking about all the stuff we're missing out on with him being gone.  Morgan will never know him.  Now he'll never buy me that pony I always wanted ;o)

I'm lucky in a sense though... because I have my father.  Sometimes if you look at him just right, or close your eyes and listen you will catch a glimpse of my uncle.  It's like my father carries a piece of him.

Maybe he does, maybe its just the twin thing, or maybe my uncle is following him around and you catch a glimpse of him.. who knows.  Now would be a good time to have my uncle around so I could get his opinion ;o)  This is a perfect example of a topic we would discuss ;o)  But sadly he is gone, and until we meet again, know that he is truly loved and missed.

Duct tape works wonders

Here I go again getting behind in my writing. I will start from where I left off. I had my appointment with the oncologist about a week ago. I wanted to see if I could get answers to my long term side effects from the cancer treatment I received as a child.  I wasn't very impressed. The doctor had never seen a neuroblastoma survivor before and didn't really know how to answer my questions.  He was like a kid in a candy store, practically jumping up and down to get his hands on my medical records.  He did not offer any new information.  Though he did seem fairly confident that since I'm 25 years cancer free than I'm pretty much out of the range of developing the more common secondary cancers. I'm just waiting to get my blood results back to make sure everything is A-ok.

I also had to have an endoscope done a couple of days ago.  The doctor determined I have barrettes syndrome which is a precancerous condition.  I guess basically the stomach acid has eroded my esophagus which can lead to cancer.  I had a biopsy done and should get the results back in another week or two to see how bad it is.  GI problems are just another one of the lovely side effects of chemo and radiation treatments.

So my biggest issue with doctors is feeling like a lab rat or a freak to be studied. I cant even tell you how many times I've gone to see a doctor who is just amazed by me.  I'm not being conceited either, or exaggerating.  What I've been through is nothing they've ever seen.  I HATE that, because they cannot offer me a solution.  For example, Dr. Lenke is the best spinal surgeon in the US.  People come from all over the world to have him work his magic.  I've had several surgeries by him, yet he still hasn't been able to do what he does to others.  He cannot fix me.  My last surgery he found out I was missing my dura in my spinal canal... he had never seen anything like it.  Come to find out, the absent dura is a result from the cancer I had.  So there you go, my cancer causing problems still today.  I'm not bitter though.  You can't fix everything, sometimes you just have to put some duct tape on, say a prayer, and hope it holds up.

I am thankful though that I've found a group on facebook, survivors like me from neuroblastoma, who are somewhat similar.  Knowing that there are other people out there that have a slight understanding what you have gone through makes you feel less lonely.  I haven't met anyone with back problems as severe as me, but it seems everyone has their issues.  To hear others' stories, some have had it very rough.  I'm grateful to be me, Picasso body and all.

On a side note:  Do you think if you will yourself, and believe with all your might that you are perfectly fine.. do you think you can overcome any physical ailment?  Mind over matter and all that...

Monday, April 9, 2012

Finally crossing the Ts and dotting the Is

I hope everyone had a wonderful Easter.  We sure enjoyed ours.  My husband and I took the kids to the beach on friday.  Then we enjoyed the weekend in the backyard.  We were blessed with beautiful weather and its always nice when my husband has the weekend off to spend time with us.  We decided this year we weren't going to go crazy on easter gifts.  The girls are still at the age where playing with paper plates, pots and pans are better than whatever you get them.  We did however finally get Makena a tv in her room.  So now she can watch a movie before she goes to bed.  I think its more for my husband so he can watch his tv shows at night instead of Makena's cartoons ;o)  

So I finally decided to talk to my doctor about receiving follow up care after my cancer treatment.  I've been cancer free for 25 years, but the last time I was checked and followed was back when I was 13.  I know I have many long term effects of the cancer treatment like heart/lung problems, kyphoscoliosis, and such.  My major concern is secondary cancers.  You have a higher risk of breast, thyroid, skin cancers to name a few.  With my mom having had breast cancer that puts me at a way higher risk so I want to make sure I am monitored for that right away. 

My experience at the doctors wasn't pleasant.  I had to have my blood drawn.  Anyone that knows me, knows what a pain this is.  They had to stick me in 3 different spots before they finally got it in the hand.  What annoys me the most is you tell the tech exactly what to do to get the best chance, you tell them they have to use the smallest needle... but do you think they listen to you..... nope.   I hate that.  It's like I know you think you know what you're doing, but I know my body and I know you are not going to get it doing what you are doing.  If she would have listened to me, I could have saved myself being poked a zillion times.  

Well I hate to cut this short but I have a 1 year old who is not happy at the moment.  I swear everytime I get on a computer she brings on the tears and screams.  

On a side note:  Why do woman get so mad at the other woman when its the husband who is a cheater?  I get that the woman is a home wrecker but I swear people get more upset over the woman then the lying cheating husband.. I just don't get it.  I told my husband he better run far far away because if I ever found out he cheated, it would not be pretty.  Forget the woman, he'd be toast ;o)

Tuesday, April 3, 2012

I'm back

It's been forever since I've written. I blame it on a bit of laziness, soreness, and just plain busy. However I'm now at a point in my life where I am more motivated to finish the things I have started. So now where should I begin. I just got back from Michigan. The kids, my sister, and I went up for a month to visit family and friends. Oh how I missed everyone. My friends are like my life line that keep me grounded and sane. It's always wonderful to know that they deal with the same issues as you with family life. Not only do I relate with them but we have been friends since middle school so that's a lot of history. Those girls have been with me through all the ups and downs and I would be lost without them. Makena and Morgan had a blast playing with the other kids and I'm always sad when we have to leave. Not only do I have to leave my friends but now they have too also.

I swear a month visiting was not even close to enough time. There was so much I didn't get to do, but I just couldnt stay any longer. My husband was missing me and I was missing him. Let me tell you something though car travel with two toddlers is NOT fun. I thought I might go crazy. Not only is a car ride hell on my back but Morgan cried about every half hour and Makena asked if we were home yet every two seconds. We got stuck in traffic for 3 hours then a downpour so an 18 hr car ride turned into 22 hrs. So yeah I definitely do not want to do that drive again for quite awhile.

So my back hasn't been too bad thankfully. I still see pain management but I think I have a handle on it. What I really need to do is eat healthier and get more exercise into my routine. So that's my next goal I am really going to work on. I am working on sowing a few outfits and I want to get back into painting. My biggest problem is I have to do those things when Morgan is napping/sleeping so it's hard to work everything in.. But I am going to try. I am tired of my life being boring. Wake up, eat, play, eat, play, then sleep. Don't get me wrong I love my kids, but I need to work some fun me stuff into the equation too. I think that would make me so much happier.

P.S. On a side rant I'd like to say that fake people annoy the crap out of me.. People who act like their life is peachy in yet I know it's just the opposite. You can lie to others but you and I know the truth. I will not lie about my life to make me look like a better person or to get attention. I am who I am, imperfect in yet happy with all the flaws.

Thursday, December 8, 2011

Scoliosis Surgery: Then and Now

I remember my first spinal fusion like it was yesterday, but realistically it was 21 years ago.  I was 7 years old, and I had severe kyphoscoliosis.  My surgeon wanted to wait as long as he could before he did the fusion but my spine was progressing way to fast.  He was only able to get minimal correction.  I was in the hospital for a month.  I wasn't able to get out of bed until my cast was made.  Thankfully I had wonderful family who stayed with me, and I had awesome roommates.  One memory stands out of my Uncle Doug playing goldfish with me and a little girl named Angel.  A memory so simple, stays with you for a lifetime.  Even though I was in a lot of pain, kids bounce back pretty quick.  When I finally got my cast and was able to get out of bed, I had to learn how to walk again.  The doctors say now, that they shouldn't have fused me that young, that it caused all kinds of problems.  Shoulda coulda woulda... hindsight and all that...  It is, what it is.

Times have definitely changed though.  I remember the last spinal fusion I had 4 years ago.  They get you out of bed the very next day.  Gone is the time where they made you stay immobile.  I can see their logic, they want you up and moving, helping the healing process, and to make sure you don't get clots.  But man, if you've ever had major back surgery you would know, that just getting up and walking the next day is no simple task.  

I can honestly say neither surgeries helped, my very first, or last... heck even the ones in the middle.  Im unique and my body is very tempermental.  I live with the fact that maybe it's just not my time to have a "normal" back.

Who knows, in another 21 years, the surgeries they do now will probably be a thing of the past.  We can only hope.