After the Tumor Board meeting.

After receiving a plethora of phone calls this morning here is my update:

#1 Tumor Board reviewed my case and the tumor needs to come out.
#2 I have an appointment with Dr. Tredway on Friday at 12noon.
#3 Follow up brain MRI will be August 5, 2010.

#4 Dr. Mrugala wants a new MRI of my thoracic and lumbar spine since the last one was done in 2008.

Dr. Tredway's profile can be found by clicking here.

Waiting

Did I mention how much I hate waiting?  This is entirely frustrating, not to mention completely vexatious.  Is it possible to feel an accumulation of every emotion all at once?  After today, I believe it is possible and would never wish this sea of feelings upon anyone else. 

I want to write each day as I travel along the path of life and triumph over the tumor but, at the moment I am at a loss for words. 

Don't know what to feel.

My emotions are becoming even more mixed and waiting is no fun.  I want to know NOW.... what is going to happen to me.

Leaving anger, next stop frightened.

My anger is dissipating and being replaced by fear.  In July of 2007 a young lady with Neurofibromatosis Type 2, who I had become friends with via myspace went into her third surgery at U of M Hospital in Ann Arbor.  Prior to her surgery we chatted about how we lived our lives with NF and promised we would be there to chat if we ever needed someone to talk to.  Ashley went into surgery with great expectations and sadly she didn't make it out. :( 

I am not afraid to die, but I am not ready to leave my family and friends behind. I have to much I want to do in life.

Or what if I can't walk/talk/see/hear?  I don't want to become a vegetable with a master degree.

Mixed feelings, mostly anger.

Writing about this journey might help me deal and process feelings, but I have never been the type of person to write about myself or keep a diary.  Today I have a million thoughts running amuck through my mind and anger is the most prominent. I am livid and irritated that this "thing" is getting in the way of plans.  We were starting another round of IVF with PGD to try and have a baby without passing on neurofibromatosis to future generations. We had to cancel the round after one prior day of shots and postpone until we know what will transpire.  Subsequently this tumor is getting in the way of my job search, who wants to hire someone who has a upcoming brain surgery?  *sigh* "Hi, I want a job, but I have brain surgery next week.  Ideally I will be at the same cognitive state that you are interviewing me at after the surgery."  Seriously! I am extremely mad.  How dare this tumor get in my way!

The MRI shows what??

This last weekend was graduation which I was able to celebrate with family, friends and classmates.  Today is the day after my final presentation and I am done with school and can relax. NOT!!!!!! I had an MRI last night after my presentation and today was the appointment with Dr. Mrugala. I expected to have a nice short visit and tell him my leg pain is killing me but other than that I am done with school and will have to relax and hope the leg pain goes away or gets better. After all stress makes things worse, right?  In good news I reported to Dr. Mrugala that the meds are working in one way, I have only had two migraines all year. :)


Well after a few tests Dr. Mrugala becomes more serious than I have seen, and my heart falls into my stomach. What followed was nothing I was prepared for and I honestly think I went into shock as the information went in one ear and out the other. Dr. Mrugala showed my mom and I the MRIs from last June and then the one from last night. There was a significant difference in the tumor that is possibly causing my pain issues.

This type of tumor called a neurofibroma is not generally removed unless it is causing an issue. Last year when this tumor was noted in the MRI it was small and not touching anything in the surrounding brain stem area. Dr. Mrugala said that these types of tumors are slow growing if they grow at all which is unlikely. However, I should go buy a lotto ticket because the unlikely happened. The tumor grew buy a centimeter and a half (I think, like I said I was in a daze) and now is pressing/compressing my spinal cord. I don't remember the exact measurement but looks like by a third.

The next words that were spoken feel hazy to me but went something like this “it has to be REMOVED” and “it is NOT IN THE BEST PLACE.” Dr. Mrugala will take the case to the tumor board which meets every Wednesday and I will hear from him next Thursday. WHAT?? I have to wait a week? Right….. how am I supposed to feel about this?

Anger…….why this?  Why now?

Summary of the months leading up to........

June of 2009 my 6 month MRI showed no changes and I was cleared to go back to MRIs once yearly.  Starting in December I began having peculiar pains in my right wrist, hand and fingers.  I would lose feeling, experience cramping in my fingers and have shock like pain inmy wrist. The nerve pain in my legs was starting to occur earlier in the evening and I was occasionally waking up with a stiff neck.  By the first week of January my hand was feeling so bad at work, I was unable to perform my job tasks as efficiently as before.  Becoming worried I made an appointment with Dr. Mrugala who follows me regularly for my NF (Neurofibromatosis.)  Dr. Mrugala ran a few tests and determined that the hand pain, loss of feeling and cramping was carpal tunnel.  A brace was perscribed to wear while sleeping, typing, or working at the bank.

By February, the leg pain was starting earlier and earlier in the day, sometimes as earlier as lunch time. The carpal tunnel symptoms were about the same, but starting in my left hand as well. My neck pain was increasing and I woke up with a stiff neck almost every morning.

During a follow up appointment on March 9th, Dr. Mrugala asked how wearing the brace was going and I informed him it was helping a little but I was feeling similar symptoms in my left hand. He suggested I get a brace for the left hand and wear it as much as possible too. For the neck he suggested that I get a orthopedic pillow, however I already have one but decided it was time to replace the 10 year old pillow. For the increased leg pain Dr. Mrugala raised the amount of my nerve blocker I take before I go to sleep each night.

By the end of March I realizes the extent of my neck pain when I couldn't turn my neck to check my blind spot while driving.  I promptly made an appointment with Dr. Tanner who is my general doctor at the Issaquah clinic.  After x-rays and full exam she prescribed physical therapy and massage therapy which I began right away. The PT and MT began to help by decreasing my pain and increasing my range of motion.

In May, the carpal tunnel symptoms were about the same but my leg pain was occurring as early in the day as 8:30 am. I was miserable.  I began to understand why old people in pain seek Dr. assisted suicide. I would never take my own life but the amount of pain and uncomfortable feelings I was experiencing made me understand why someone might. I called my case manager at Dr. Mrugala’s office and asked her to help me and asked if I could have an MRI of my neck when I was to have the next brain MRI in June. After talking to Dr. Mrugala and he not only agreed that I could have the neck MRI in June but prescribed additional pain killers to keep me sane.

By the end of May, I was no longer able to receive PT due to a cap on my insurance but still had coverage for my massage therapy.  The leg pain was ruling my life and I hated taking pain killers everyday but needed to survive.