The REAL Fight

So, since 2002, I've been a "watch and wait".
I have always preferred to call it, "watch and live". And that's what I did.
In June of 2002, when my first baby was 16 months old,  my doctors found a meningioma tumor in my spinal cord,  that was between the cord and the cord covering, measuring 1 cm.  it was just big enough to put pressure on my spinal cord and cause compression.  I didn't even know it was there, the only thing that was happening to me at the time was -when I woke up in the morning my arms were dead    I couldn't move my hands at all and then for a few minutes I had pins and needles and then my function in my arms and hands came back.   I blamed it on my mattress and so I bought a new one !   I was 26 years old, I had a new baby,  I felt great, my life was fabulous and I was pretending that  NF2 wasn't even there.
I was going to the doctor once a year for MRIs and a neurological exams, and when he would tell me that I was stable I went about my business and life resumed as normal.
The way my doctor delivered that news  was a blow and a shock.  He said leaving that tumor there would give me five years to live,  and having it removed was a 50% chance of being paralyzed from the neck down
 I always wanted to be a mom and I was just starting and hearing the news that I would be a quad and have history repeat itself and I would be paralyzed just like my mother was, in was way, too much for me to handle.  Everything was happening so fast.  He referred me to a neurosurgeon and we were planning a surgery,  but I felt like I was on the outside looking in -  I couldn't believe this was my life .   I found myself just going through the motions.
That's when the daily meds started. Prozac and Xanax.  I just couldn't grasp my options.   I was too busy and I had a lot of things to do.  My plan was to do everything with my baby that my mother never got to do with me such as be a room mom, go on field trips, go school clothes shopping,  go to the mall, go to the movies, just go shopping in general, and go food shopping!!  Up to that day I had never ever called a babysitter.   I took her with me everywhere because I wanted her to remember that we did things together and I took her places.  Plus I just could not see for the life of me any point at all to leave her alone at night while I went out and had fun.   Without her. My idea of fun was her bedtime routine and I was there every single night to kiss her and tuck her in .
It was then that I realized how fast life can change in the blink of an eye.  Letting NF2 win, or take over or even interfere,  was never part of my plan.  I knew that it could, because that's what it did to my mother when she lost her life at the age of 36 but I just never imagined anything like that would ever happened to me. And here I was with a brand-new baby forced to make a decision -do I live five more years and just let it run its course or fight back  and have the tumor taken out and risk being in a wheelchair for the rest of my life, depending on other people and never doing anything with my baby that I planned.
Long story short- I had it removed and the surgery was so successful that I even recovered with not only no function loss but full range of motion in my neck.   After six weeks of round-the-clock care and no lifting and depending on other people , I finally had my life back and we were going to move forward like nothing ever happened.
Six months later -it was a Friday, and I know it was around  4 o'clock because I was watching Oprah, A green thumb print appeared in my vision field everywhere I looked.   Being that it was a Friday and so late I waited until Monday to go see my doctor.   He immediately sent me to an eye doctor who  was local and close because he believed it was an emergency.   The eye doctor noted that my retina had detached spontaneously and called in his associate who was a retina specialist.  He said my retina was hanging by a thread and I needed emergency eye surgery.   It was pretty routine,  my best friend's father had the same surgery, all he had to do was put a retina buckle in.    Yes it was directly related to my disorder because with  NF2,  you get to have weak thin retinas.  So the next day I went to the hospital where the retina specialist preformed this emergency surgery.   I was in recovery with the worst headache I've ever had in my life.   The next day was Thanksgiving and I was home because it was same day surgery.   My eye was bulging and I couldn't stop vomiting because my head hurt so bad.   The doctor called to see how I was and when I told him,he made me immediately meet him back at the hospital.  He informed me, of his mistake.   When you put in the retina buckle you have to fill the space with silicone oil to hold it in place but he accidentally put too much and the oil was spilling into my cornea.   The cornea's natural defense is to grow vessels to fight foreign objects in the eye.   He took some of the oil out and for the next six months at follow-ups, I kept telling him I still couldn't see.   He kept insisting that my retina looked great but he was ignoring what happened to my cornea as it got worse and continued to grow vessels and it was forming a major cataract.
I had another surgery to remove the excess oil and the cataract it formed.  But it was too late my eye was blind, and I sued him for medical negligence. The lawyer was so excited he told me it was a $1 million case and assured me that we'd win because the doctor had even noted that it was his mistake that caused me to go blind.   It took another six months for the experts to review my case and then one day my lawyer came back to my door and he did not look excited anymore.  He said due to my pre-existing condition, Neurofibromatosis type 2, The experts could not prove that I would not have eventually gone blind on my own someday and I had no case.
A single battle lost but not the war -life resumed as normal but.... with one eye.
And for the next 13 years I did exactly what I planned.   We were busy, we did things, we even had another baby.  I was room mom, I went on field trips, I went school clothes shopping, we went to the mall, The movies, Disney, the beach, the river, we had sleepovers, we went to friends houses, I was a baseball mom, a softball mom, I want to school board meetings, I participated in research studies, I had motorcycle runs and benefits to raise money for research.  We had a pretty full life and I was very involved in both my children's lives, and I was a good wife.  And my husband was good to me, and provided for us.  I made a lot of new friends in my community because I met a lot of people through my kids and their school.
I was winning.   I still went to the doctor, though instead of every year it was now every six months.   And I kept hearing the word stable and then I kept ignoring NF2. Until recently when I couldn't ignore it anymore.
My vestibular system has failed completely.  I have rapidly begun to lose my hearing.  The spinal cord tumors have started to multiply and they are all in dangerous locations, all inoperable.  Today I have 26 spinal cord tumors, 7 brain tumors, and one peripheral nerve tumor in my right calf.
I could have several surgeries and let them pluck these tumors out one at a time, with the risk of function loss such as permanent deafness, a paralyzed face- losing the ability to swallow  and more.  Or I could try this chemo called Avastin.   Avastin has been proven to bring back hearing stabilize spinal cord tumors and even shrink brain tumors but it doesn't come without risks.  The adverse reactions include stroke, brain bleed, aneurysms, internal bleeding, holes in the intestines, and bleeding out.
So this is my fight. And it starts tomorrow~ the first day of summer break of my daughter's freshman year, and my son's first year of middle school....and I will have my first infusion at Jefferson.   Every three weeks for the rest of my life or until something better comes along, I will get chemo .  This was a very hard decision knowing all the risks involved- but I had to weigh the risks versus benefits and I've decided this is the best choice and I feel pretty confident that it's going to work.  I'm also going to blog this journey.
 I guess the real fight is now.   So here I go #ikNOWaFIGHTer #endNF