i am naomi’s stream of consciousness.

am i numb?  it’s too much to take in.  too much to process.  or am i just strong?  they keep telling me i’m strong.  i guess i should believe them.  it’s hard to see oneself objectively in these situations.  i think i prefer stubborn.  i told the UCLA neuro-oncologist (md, phd, very important) to please address himself to me.  he was looking at my parents, at walker.  like i was an item to be discussed.  a non-entity.  inanimate.  am i already dead?

i want to feel in control.  i want to take the reins.  this is my life, you know.  my brain.  my tumor.  my brain tumor.  maybe if i say those words enough — aloud, written, whispered, shouted, perhaps — they’ll start to seem real, instead of something that happens to someone else.  i am a statistic now.  zero-point-two percent:  a small statistic.  does that mean i’m more important now?  less?  in fight club, edward norton’s character says:  “this is why i loved the support groups so much, if people thought you were dying they gave you their full attention.”

the neurosurgeon seems to understand:

first, he understands that we have to take this one step at a time:  PET, MRI, biopsy, pathology report, take my case back to the brain tumor review board (it was already there once, this wednesday), get a second opinion from UCSF.  then, and only then, make a decision about how to proceed.  the one-step-at-a-time approach makes things more manageable in some ways.  no sweeping generalizations.  no big-picture thinking.  but it also makes things more difficult.  how do we find a place to live — a place where people can come visit and help take care of me — if we don’t really know what we need and when we’re going to need it?  the waiting and the guessing is tricky, but not unbearable.

second, he just plain understands.  the first thing he told me is that he’d treat me like he would his sister.  he does have a sister; i asked.  he also said he’d been on the other side of the table and knows how it feels.  i believe him.  i feel like i’m in good hands, capable hands.  hands that care to give me all the information i need to make the right decisions, to empower me, to help me, as he put it, be at peace with the situation.

i do feel at peace.

but does my brain?  what’s going on in there?   i haven’t looked at the MRI yet.  it’s like there’s some alien invading my body, and i don’t really know what it looks like.  they say it’s diffuse — as opposed to golf-ball-like.  it’s got its tentacles reaching into the pathways that help control my body.  it’s pushing the good, healthy cells out of the way, impairing my motor function.  that’s why i have trouble walking.  silver linings:  it’s not affecting my arm/s (yet) so i can still type and write.  good thing, since there’s so much to do, so much to plan, so much to organize.  also, it’s my left leg, not my right, so i can still drive and maintain my independence.  i’m beginning to realize, more than ever, how much i value my independence. (though also how much i value having people who love me on whom i can depend.  two sides of the same coin, i think.)  i found out this week there are no pain fibers in the brain.  who knew?  at least my brain’s not in pain.  at least i’m not in pain.  not yet.

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12 thoughts on “i am naomi’s stream of consciousness.

  1. Oh Nomi, I wish I could have been there to be part of your support system. Love you so much – and I am wishing for the best possible news next week.

  2. Naoms: You ARE strong and one of the brightest women I know. I am honored to have you as a friend and travel with you along this journey.

  3. I love you Nomi. You are strong and stubborn, but thats what makes you you. I am Jack’s complete lack of surprise that you are attacking the problem systematically and strategically. One step, one day, one breathe at a time. I am praying for you and your family. Slide.

  4. As someone else said, I’d give you a strong and stubborn thumbs up. You will move forward, taking control where you can, being at peace with what you must, and will not fall victim to this process; of that I am certain.

  5. Naomi, I wanted to tell you that I’m here for you. I love you very much and I’ve always admired you. I do know what it’s like in some way to be ignored by doctors. When I went to the numerous doctor’s appointments for Gabbon the first year after he was born I noticed something frustrating. They all addressed my mom. They looked at her spoke to her, gave her the information. I felt invisible and unimportant even though I had not only the power but also the responsiblity to make medical decisicons for Gabbon. I love my mom and all her support but this was very frustrating. But I noticed a trend, it was mostly the adult doctors not the pediatric doctors that did this. So I can relate to that. And it sounds like you’ve found a doctor that understands you and connects with you on a human level not just a medical level which is extremely important. I think taking it day by day is a good approach because you have to be able to adjust and accomodate to the constently changing situation. I know this has been the case for both Gabbon and I for the last two years.

  6. Sweet Naomi, I haven’t seen you in years. I have kept up with all your wonderful accomplishments through Josh, your Aunt Anita, and Uncle Joe. You are precious, kind, gentle, and wise beyond your years Just know you are being prayed for and God has given you strength.
    Josh’s Granny

  7. Oh Naomi – I am so saddened to hear this. I love you and will be there to help support you in any way you need. Be strong

  8. hi naomi and naomi’s brain – your display of strength, organization and realization is very much admired. i will stay strong and focused for you and keep you in my every day thoughts. i look forward to our time together as you go through this journey.

  9. Naomi, you remind me of a combination of your two parents…strong, stubborn, positive, head-on approach. You’ve been a child “trained up” in the best way to look at life and to handle what life throws at you. I find you to be an amazing woman. You are loved, my Dear.

  10. Imoan,
    It saddens me greatly to hear of this. I’m praying for you and if there is anything I can do to help don’t dare hesitate to ask.

  11. Naomi, I want you to know that I am praying for you. I think about years past, my sweet little neighbor, and her delicious muffins. Thank you for sharing your inner thoughts.

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