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I'm 26 and have been married to my husband for 3 years. I have an 8 year old step daughter that I love like she is my own. We have been trying to add to our family but my body just does not want to cooperate. I also have a physical disability and a medical history that could probably cover the length of a football field. This is the story of my struggles in the past, present, and hopes for the future.

Saturday, March 24, 2012

The Aftermath: "If I Get to Five"

Book two that my tumor doctor wrote.  "If I Get to Five" by Dr. Fred Epstein  There is a section in the book about a boy whos story is similar to mine.  The title of the book says it all.

Ever since I can remember I told my mom that I wasn't going to live to be be 16 years old. I don't know why I picked that age but I truly believed it. So many surgeries, needles, medicines, and complications. I honestly thought that my life would be over before I was able to drive. Every time I went into surgery I wrote a will. My mom always told me I was silly for doing it and that it wasn't legal. I didn't care. Sometimes I would prepare them before and type them up to sound all professional with legal jargon. Other times I would forget until right before I went into surgery so I would have to ask my mom for a piece of scrap paper from her purse. I've had 17 surgeries total, so that's a lot of wills. Each year as I got older they would consist of higher priced items. In the beginning it was, "To whom it may concern, if I die during this surgery, please give my toys to my friend 'insert name' and my dollars to my sister." Later on it turned into, "To whom it may concern, please give my stereo to 'friends name' and my allowance to mom and dad, and lastly my cd's to 'friend'. But please, do not let my sister have any of my stuff."  The day I finally turned 16 I remember my mom saying, "I knew you'd make it."  Even years later she says, "Remember when you used to think you weren't going to live to be 16, look at how old you are now."

Looking back, I honestly don't know how Igot through it all.  Seventeen surgeries is a lot for one person to endure.  My worst surgery out of all of them was my scoliosis surgery.  The radiation treatment made my vertabrae soft causing my entire spine to bend and curve in two seperate directions.  I was bending into an S shape looking at me straight on and an S shape looking from the side.  The pain from the tumor was completely gone but now I was dealing with a new pain.  They made a back brace to stop my spine from curving any futher or to see if it would correct the problem but it did not work.  My right foot was also still curving at the same time.  Luckily, I had no feeling in my right leg.  My leg brace had gone from ending at my shin, then to my knee, and now all the way to the top of my thigh.  Because my foot was curving, the brace was rubbing and leaving sores on my foot.  Sores that I could not feel that would get severly infected.  So infected that I had been hospitalized and sent home with a shunt in my chest for 6 weeks of IV antibiotics because my body was struggling to get rid of the infection.  I was fighting two battles, and losing fast.  My orthopedic surgeon decided to do a drastic surgery.

The plan was to do two surgeries in one week.  Surgery 1 would consist of cutting my left side from the top of my left rib all the way down to above my hip.  Bone from my butt and hip were needed in ordered to fuse the spine into place. He would remove my ribs, put the two rods in through the side then put my ribs back in.  Surgery 2 he would go in through my back cutting down from the top almost all the way to my tail bone.  He planned on using more of the butt and the hip bone to fuse the rest of the spine, put two more rods in and hold them all in place with hooks and screws.  During surgery 2 he also planned to completely reconstuct my right foot, cut my tibia and fibula to rotate them in and add a rod in my right leg. 

Surgery 1 arrived and turned into a 14 hour surgery.  Once he got into the operating room and started working, he determined that my body was not strong enough to be put under two times and all of the work would need to be done in one.  I woke up in the worst pain of my life.  I was cut on my hip, butt, all down my left side, and my entire back.  I had never had bone taken from me before and it was the worst pain.  Even though I can't feel my leg my body has a weird way of warning me when something is wrong in my right leg by sending a sharp pain up to the fold of my leg.  It happens when I have infections too.  I was having severe sharp pains in the top of my leg and literally hurting all over.  I couldn't roll to the right because that's where they had taken half of my hip bone.  I couldn't roll on my left side because that's where they had gone in to put in the rods.  My ass hurt like hell.  And of course, my back.  O and I almost forgot about the blood drainage bubble I had sticking out of my back.  The whole thing was a nightmare.

I was in the hospital for what seemed like weeks.  After I finally got out of the hospital I felt like shit.  Literally like shit for 3 months.  Before the surgery my doctor had warned us that my body could potentially reject the metal.  If this were to happen, he said we would know it.  I laid on the couch for those 3 months feeling like crap and popping pain meds like it was no ones business.  My doctor and parents feared that because I felt so sick that my body really was rejecting the metal.  I had a tutor come to my house so I could keep up on school.  I was in 7th grade that year and have no idea how I passed.  The day I finally went back to school, still feeling like crap of course, I was in a wheel chair and had to wear a back brace for months.  I remember a boy making fun of my back brace (I had to wear it over my shirt) because it had boobs.  I was so embarassed.  I finally ended up feeling better and again learning how to walk all over.  My back would never hurt again.

After the foot reconstruction my orthopedic surgeon realized that I was dealing with a whole other issue.  The tumor and radiation had stunted the growth in my right leg.  My left leg continued to grow at a normal rate but my right leg was frozen in time.  We're talking two to three inches in time and I was still growing.  Thus began my leg lengthening journey.  He decided to start with my femur.  I can feel from my thigh up, so I knew this was going to hurt.  Three long pins were screwed into my right thigh and were protruding through my skin.  They were sticking out and were held together on the outside of my leg by a large metal bar.  My right femur was literally broken on the inside.  On the outside I would turn a silver nob one millimeter every day.  The idea was that my bone would be spread apart one millimeter and new bone with grow, in turn making my leg longer.  We ran into issues, of course.  My femur was growing together too quickly.  I would go to turn the nob and it was unable to move because my bone had healed itself.  The only solution...to operate and break the bone again.  After the first rebreak, I was told to turn the nob two times a day so we would not run into this problem again.  Unfortunately, my femur grew back together yet again.  The surgery rebreak would end up happening three more times.  I was going into surgery every week at that point.  My doctor finally decided to throw in the towel.  I don't exactly remember how many centimeters or inches we were successful at getting, but regardless, it wasn't enough.  I was still walking with a severe limp because of the length difference.

It wasn't too long after the femur that we decided to move to my tibia and fibula.  That pesky rod that was put in during the spinal surgery would have to come out.  And in went 5 pins and a halo, and of course, two broken bones.  Thankfully, this was the area of my leg that I had little to no feeling in.  I was having the sharp pains in the fold of my leg though.  One large pin stuck outside of the middle of my knee while three skinny pins with straight through one side of me knee and all the way out the otherside.  The last pin was at the very bottom of my shin, sticking out.  All of the pins were held together by a roud metal halo that went around my knee and a long vertical piece that connected it to the shin pin.  This time around we were lucky with the clicking of the nob and moving the bones apart for regrowth.  Rebreak surgeries were not neccesary.  Unfortunately, this time I had the opposite problem.  Weekly x-rays showed that my bones were not growing back together.  How is it possible to go from too much healing to none at all?  I was frustrated and sick of all of the surgeries and complications.  The process this time would be drug out for months.  I ended up being on crutches for an entire year.  My arms were in pain so I had a bone scan that revealed tiny hairline stress fractures from being on crutches for so long.  The halo was eventually removed and length was a success.  My leg grew 2 to 3 inches.  It was a massive difference in walking but still not the entire height we had wanted.  I was in a walking cast for about 8 months in which I refractured the bone a few times just from walking on it.  In the end when it finally healed, I was releaved and proud that I had made it through such an awful few years.

The side effects and surgeries, half of which I haven't even mentioned, are still a challenge for me.  I honestly wouldn't change a thing that I've been through.


 

1 comment:

  1. Wow. What a story you have here. I am starting at the beginning of your blog and plan to read all the way through so I can catch up to present day.

    ReplyDelete