A Little History

So at this point I am almost positive that everyone that knows me also knows about my brain tumor. It is now become a part of me. A part of my everyday life.  Everyday I have fears of what could happen if what is left of my tumor decides to grow. Now everyone might not be aware of this part. I do have two tiny tumors left in my head. One is in my ear canal and the other is wrapped around my facial nerve. My first 3 month post op MRI they could not tell if there had been some thickening in the tumor so I had another scan 6 month post op that would give them a better idea. I had this scan and thank god no growth. But the fear of stereotactic radiation is always in the back of my head. And it is amazing if you google search stereotactic radiation a ad for acoustic neuroma is the first thing that pops up. Acoustic Neuroma is my tumor friends technical name.Well I wrote down some stuff back in November of 2011 and I am going to share that.


11/20/2011
I am starting this journal now. Even though my journey has technically already began. Some of the dates I will never forget. September 22, 2011 the birth of my beautiful daughter. July 22, 2011 the day face became numb. October 13, 2011, three days after my 27th birthday and 3 weeks after my daughters birth, having my husband come home from work to inform me of a mass in my right ear that had showed up on a MRI of my brain. At the time happy to hear no cancer and thinking a same day surgery. October 14th getting a call from the neurologist that this tumor was pushing against my brainstem. My life source. What makes your heartbeart, what makes you breathe. Finding out not a same day surgery yet a pop your skull off dig in your head invasive surgery. October 20, 2011 meeting with the neurosurgeon Dr. Pollack. Finding out the tumor was 3.5cm, my face could become paralyzed. No peek a boo with my daughter. No smiling back at her. They claimed reconstruction with my tongue muscles that a smile could be rebuilt, but no more natural smile. Talks of hydrocephalus, serious permanent life changing things from this tumor. Hearing progesterone the hormone during pregnancy and all birth controls is what makes this tumor grow faster. HEARING at 27 this could be the end of your reproduction years. Knowing post surgery no carrying my daughter for weeks as my body adapts to losing balance and hearing permanently on the right side.
11/21/2011
Surgery was decided to be the only option. The tumor was large and I am so young other tests had to be performed. They were worried about me having a condition neurofibrosis that tumors would grow on the nerves of my central nervous system. In order to test for this I had to have 2 more MRI scans one alone was a hour and a half. Fred works for a imaging department and I will never forget his face as he waited to hear the good news of no more tumors. We did find out NO MORE tumors. This was big news. No more tumors meant the tumor I had was less sticky, easier to remove, better chance of keeping my facial movement. During this week Autumn was only 5 weeks old. I had to call on friends for constant babysitting help everyday. Since they wanted to get it done as soon as possible. I went a whole week with people watching her and I remember reading facebook and peoples comments about going back to work after having their baby and feeling jealous. I had to leave my baby at such a young age. I couldn't walk very well with her due to my balance and vertigo. I got nailed with postpartum emotions while managing a tumor. I felt guilty for these feeling. I wanted to cry for her and all the things I saw other mothers doing with their babies that I just physically was not capable of. And I wanted to cry for myself for no one should have to be scared for their life and scared of losing their smile at 27. I had 2 more appointments that week for my hearing and my vision. My right ear to be expected was gone I could not make out voices and understand speech. My right eye was more open and unable to react to touch therefore no more contacts for fear of infection. Drying of the cornea and fear of overall infection for the right eye grew. This week was draining on me. No one wants to hear for the rest of life. The surgery kept getting pushed back. First November 1st, then 8th and finally 9th. As I prepared for surgery I leaned on my husband more and more. I had days when I absolutely was scared. The tumor would fluctuate in feeling through out the day. It would feel like my face was melting off. The tension would get so strong on the right and then at times would shrink. It would be bearable at times followed by unimaginable pain. No one could predict how my body would react post surgery. No one could tell me how my tumor would react to removal. How damaged my nerves already were. My face was drooping on the right. On a scale of 1 to 5. 5 being the weakest the neurosurgeon gave me a 3. I had to hold my cup farther on the left for liquid would drip out the right side due to the weakness. I would put gel in my right eye at night for it wouldn't close all the way and I didn't want it to dry out.  

Well that is all I wrote but I found this the other day and it made me cry because it brought back all those painful memories. I hold my head high and I am grateful for the way my surgery turned out because I truly am a medical miracle. I do fear the unknown with my residual tumors, but I have faith and I will continue to smile especially since well.......I can :)