Ode to a face

I get gamma knife radio surgery tomorrow. Stereotactic something or another. On the tumor that said “stable” on report after report.

But then, a conscientious neurosurgeon, dare I say, a friend, cared enough to look, then look again.

“I hate to say this, but it looks…fuller,” he said and he leaned back and pulled his glasses off. Deep breaths and we decided not to panic, don’t freak out and don’t make any decisions, don’t overblow what it means or step out of line. Let’s give it four months, let’s wait and see.

Four months came and went, another scan, another report, “stable.”

“Maybe we were wrong,” he says as we lean closer to the computer investigating side by side MRIs.

We go way back to the beginning, before any surgery, then to the last surgery, and then to every year. We bypass report after report with the word stable on it. The doctor slowly and meticulously measures each MRI, jotting down the size on the back of his clinic notes. He mumbles to himself, “if you only look scan to scan, the difference is negligible, but if you look over time, all those changes add up.”

“Add up to what?!” I loudly say. Coming out of his focus, his face falls.

“I don’t want to give you any more surgery… so I think our best option is to radiate.”

I went home and pulled up every MRI, I spent days poring over them, comparing reports, doing my own measurements. I sent messages to my doctors in Arizona, the ones who’d accepted that simple report, one word, stable. I asked them to take a long view, to look over time, they agreed, the best thing to do was to radiate.

In my quest for a different answer I kept finding myself on the same road, hurtling forward toward the same cliff.

No, radiation won’t kill me, it may not do anything to me.

But it may steal my face. It may take my ability to smile, to wink, to scrunch my face up reflecting what my sweet baby does to me when she is expressing her array of emotions. It may take my symmetry. It may take my ability to blink. It may make the side of my face fall, fall, fall. Fall flat and frightened from a world unkind and cruel to those whose disabilities they can see. It may steal my mask, so carefully cultivated, curated and conditioned to smile, to nod, to apologize, to consider everyone before it considers me. It may steal my furrowed brows, creasing in the middle, and it may steal my smirk, when I think I’ve been so funny. It may take my beauty and with it the shield I use to face the unfathomable. It may take my smile. My smile. It may take my smile and with it, it may take my breath away.

Tomorrow I go in for radiotactic stereotactic something-otactic radio surgery. I haven’t even bothered to learn the name. Mostly because I don’t want to go.

“ACT CASUAL,” I say to the friends who wish me well, don’t offer to be kind or to support me because I am not even sure I will drag myself out of bed and go tomorrow. I feel fine. I feel fine. Yet, something grows within me, and while the treatment may steal my smile, so may the tumor, so I guess we go out on my terms, even if I’ve written the terms with a deep and profound reluctance.

Tomorrow I radiate my brain. Like my mother before me (no really she did brain radiation this year and no we did not get a buy one get one coupon even though we share, among many things, a neurosurgeon), I walk forward with courage (not really), a whisper on my lips, that I’m gonna be alright and this too, like all things, shall pass.

Peace and love and a big, wide, slightly uneven from a decade of craniotomies and a tumor on my facial nerve, but not totally uneven , maybe for the last time, smile,

Samira

4 thoughts on “Ode to a face

  1. Wishing you the very best. I too have a tumor in my ear. I have been on wait and watch since 2014. Mine is a very small one. When I found it they couldn’t believe I had caught it so early. First year I had 3 MRI’s to see if it was growing. As you said it was stable. One more MRI the next year still stable. They had me go 3 years before I had another MRI, still stable.I thought should I do radiation? I went to Gamma Knife specialists I did research. The surgeon couldn’t believe I had found it so early since it was so small. He suggested I do wait and watch too. I told him I had Tinnitus and had noticed a hearing loss in my right ear so had gone to an ENT. She found nothing but sent me to get my hearing checked. She commented as I was leaving there is something it could be since it was only in one ear and I had not had anything happen to my ear. She said it’s very rare its called an Acoustic Neuroma or Vestibular Schwanoma. I went home to check out what that was. i thought I couldn’t have that! Doing my research I saw the tympanogram of someone who had what the doctor said was rare. I went to get my hearing checked. Afterwards the girl gave me a copy of my tympanogram and told me I needed to go back and see my ENT. I took it home and compared it to the one I had seen in my research. They were identical. I thought I can’t have that. It wasn’t long before the ENT called me herself and said we need to do an MRI. She said do you remember what I told you about something rare? We need to see if that’s what you have. I have now been on wait and watch another 5 years for a total of 10 years. I need to go for another MRI now. I am scared this time I won’t be so lucky. I can’t make myself go again because I don’t want to make the decision that you have had to make. I’m scared of those things you wrote about. I don’t want to have to make the decision. The tinnitus is still there. I call my tumor “My little unwelcome renter in my head, who’s not in paying rent. ” I found your blog a few years ago. I think you are a wonderful writer. You are giving me the strength I need to go get it checked again. I just want to reach out and hug you. You are a strong person and I just know we will be see your beautiful smile in the next picture you post. Sending hugs and prayers. Sent from AT&T Yahoo Mail on Android

    • Thank you for sharing your experience, I hope that the things you fear don’t come to pass but I will say in my experience, I was always able to manage them in the event they did happen. Wishing you well and thinking of you.

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