Monday, December 6, 2010


This past week I have been at NIH in Bethesda, Maryland for my 3rd trip to participate in a clinical study of NF2. Each visit I fly out with Paul and have high-tech MRIs and see specialists for the smorgasbord of issues NF2 has gifted me with. I've swallowed barium mixed with pudding in front of a moving xray, had fluorescent dye injected into me as multi-colored lights were flashed into my dilated eyes, been timed as I used one hand to pick up quarters and place them in a cup, and been poked with many an IV by incompetent nurses who don't seem to know how to get the vein on the first try. After all of the tests on the last day I sit down to go over the results with the doctor in charge of the study. Dr. Asthagiri is friendly and empathetic, he makes looking at tumors in your brain feel like opening the mail, just another task in a busy day. I have been blessed in my NF2 journey. I may be Deaf, but I have so many NF2 friends my age who cannot walk, see, talk, eat, or even think clearly for all of the surgeries, tumors and medications they have been assaulted with over the years. The fact that I can run and do not suffer from facial paralysis labels me as "lucky" in the NF2 community, and I am grateful every day for that. However, on my biannual MRI results day I am not comparing myself to others, I am instead forced to look directly inside myself and see the army of tumors attempting to choke out my entire brain and spine.

Each visit I have only minimal growth, but that growth is measurable over time and as it stands now I have a 3cm tumor that looks ridiculously scary and intrusive embedded right in the top center of my brain. It has a tail winding back like a whisper the length of my entire head. The space between the 2 hemispheres of my brain looks disgusting, lumps of tumors clot together in trails, others stand alone in random places. MoFo has stopped growing and is stable, but has not shrunk, and is now surrounded by baby tumors all lunging toward my brain stem. After swallowing the image down I asked the Doctor to show me my spine MRIs. We went through each section, and it seems my spinal cord is barely dodging contact in too many places to count. After thoroughly reviewing the doctor told me that as of now I am stable.

STABLE!? (and here comes the rant, if you are having a nice day look elsewhere before I ruin it.) How the hell is having so many tumors I cannot count them stable? Is stable synonymous to "There is not a damn thing I can do, keep running until you lose every single bodily function one at a time, your dignity, as well as your ability to communicate and partake in life with everyone else, then die." or does it mean "Yup, you still have NF2 and there is still not a cure, and no matter how healthy you eat or how much you run this is something you cannot control so just go eat some chicken Mcnuggets and wash it down with some JB because you'll be dead before it matters anyway." OR does it mean "We see people way worse than you every day and so we are unable to validate your fears and concerns and instead want you to go home and pretend you will get to ever be normal, while everyone around you looks the other way and pretends the same thing while slowly distancing themselves from you so they don't have to cry when you inevitably die."

Now here comes the part where I end on a high note, but today I have nothing to give. I am just empty. I think it is particularly cruel to have watched my Grandma, Uncle, and Mom all go through this before it is happening to me. I know all too well what is about to happen over the next decade, and wish I didn't. I wish I could lie to everyone but I can't even lie to myself right now. I already feel apologetic for my rant, reminding myself that I am not the only one with problems, and I am blessed in my life. I have excellent medical care, am surrounded by a family who loves me, have a solid marriage with my best friend, children who make me proud, and friends who honestly care about me. Would I rather live to be a hundred but live those years lonely or in squalor? Isn't life about the quality and not the quantity? On most days I truly believe in my heart that the amount of time God decides to grant me is more than enough, but sometimes I am just not that magnanimous, some days I kiss my kids extra hard and think "I don't want to go." Why does everyone else get to live while I have to die? My parents, Paul, the kids, will all continue on, and I'll just be a picture on the wall. They'll only hang the ones of me now, bright and smiling. The ones of me in the end will be hidden, and eventually forgotten. Admittedly, we are all resigned to the same fate, it just seems my luck will run out sooner than most. I cling desperately to the hope for a cure, and strive to make a difference in each day I still exist.

What else can I do? What else should any of us do?


Sheila said...

HUGS GIRL!!!! I LOVE you and I hope for a cure as well!! But those who love you will always be there for you! You will never be alone, especially we me around girl!! :o) Keep your head up!! No pity parties girl!! Just take it on day at a time and enjoy each and every moment as it comes!! LOVE YOU!!! :o*

Amber P said...

I'm glad you shared your rant and thank you for being so raw and honest to us all. I truly believe in a way you are the lucky one. You have found what you are meant to do in life. Even though it sometimes feels in vain. You have found love and friendship that most people will never know. It will be hard (I use this word for lack of a stronger one) losing you, your light, your energy, but it won’t ever be gone. You have built a solid foundation of love around you and you will not go without a fight. All the work you do brings them closer to a cure. All the work you put into yourself extends your quality of life.

You are an inspiration to me (and I'm sure many others)...

~Amber P

Felicity said...

I read your post in a reader, but now the text isn't showing up on your blog.

I also have a huge tumor in the front center (3+cm) of my brain. The doctors told me it "could" cause seizures. So far it hasn't, but the "wait and see" approach is hard to deal with for sure. Always wondering where the next tumor will pop up and what part of your functioning you'll lose. A few weeks ago I lost use of my hand for about 48 hrs and i'm getting my C-spine MRI early to see if my tumor on C2 is the cause of that.

The last sentence in the 3rd paragraph really hit home for me. My friends are all gone, except for 2. You totally hit the nail on the head about people wanting to distance themselves so they won't cry when you die. That's exactly how I interpreted their behavior.

I try to be positive, but the truth is this disease is a monster and it sucks so bad!! Big hugs!!

Olivia Hernandez said...

Felicity, seems like we are in the same boat, don't you wish you could jump off? LOL I watched my Mom's friends and family almost all distance themselves, even her closest friends were nowhere to be found in the end. I think the harsh fact is everyone dies alone, even when surrounded by family.

I am already feeling a bit back to my normal chipper self after venting a bit here!

Anonymous said...

Olivia...i know there are no words that could make you feel better. This disorder sucks and like you said, there is nothing we could do about it yet. My love goes through these emotions at times...and I tell him he does not always have to be a cheerleader...feel your emotions and dont be embarrassed by them; they will make you feel stronger later. I have seen some of his friends slowly disappear as well, and that hurts me. It bothers me to think how selfish one could be...always thinking me, me, me. But for every friend that has disappeared, many more have come our ways through NF2 (like yourself).
Big hugs girl!
Love Always,

Felicity said...

I'm the first person in my family to have it, so I haven't lost anyone. I can't imagine what that is like, but i'm so sorry for your loss. I don't understand why people distance themselves... fear I guess. Even my family is kind of weird and distant. I think they're in denial or something. I met a young woman at an NF function last October, who said her dad stopped talking to her after she was diagnosed, WTF?

Venting is healthy! ; )

Anonymous said...

I ran across your blog via google search back in Jan on the night my sister was at House in LA getting her 2nd and 3rd NF2 tumor removed. It's been exactly 3 months since my 30 yr old sister's NF2 diagnosis. We didn't even know NF2 existed until then and it's something that has changed our lives (esp. my sister's) forever.

Your blog is like a window into my sister's soul, helping me figure out what NF2 is and what's going on and the things that must be going through her mind that no one else but those walking in her shoes can even begin to understand.

The hard part is watching people not know what to say or do w/her now that she is back home. They don't understand NF2 and they think bcs of this surgery, she'll be back to normal and life will go on like usual and she'll get her hearing back in a couple more months. I just want to scream, "Why can't you understand?! This is just the beginning for her!!" No one gets it! They found 4 more tumors incl one right on her facial nerve (which was hiding behind the 2 the drs just removed)...they left it in there to monitor for now. (My emotions are still so raw from all of this. I hurt so much for my sister and what NF2 has and is taking from her.)

Anyway, you have helped me more than you know.


Olivia Hernandez said...

@Amy, your sister is so blessed to have you supporting her, she will never be alone as long as she has you. Are you guys going to start learning ASL? Where are you from? Feel free to email me at

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