I ask of you today to please help my incredible sister, Michal.
She is facing an unfathomable challenge. Your love and emotional support cannot be more important and in addition, your help to soothe the edges of a profoundly difficult healing process would be received with limitless gratitude.
Michal is facing an uncertain future with her health -- a surgery to the delicate inner spaces of her mind and permanent loss of hearing and balance that will result in a long recovery. It is heartbreaking to imagine such discomfort and disorientation. Those of us who love Michal will be taking every step with her.
The resources from this page will go to ease the life burdens so that Michal, Michael and Maya can be free to focus solely on healing.
Money will assist with:
All the things that money makes less stressful during this time.
Things health insurance won't cover.
Michael's unpaid leave from work.
Alternative care appointments.
Multifaceted rehabilitation from brain surgery.
Child care for Maya.
Thank you all for your love, care and concern. Thank you also for your contributions that will help this be time totally devoted to healing for this beautiful family. Much love and gratitude.
Here's Michal's Facebook post:
My dear friends and family. I have some news to share. Last week I was diagnosed with a pretty substantial tumor on my vestibular nerve and pressing up against my brain stem.
I went in for a basic check up, as I'd been having a sore throat on my right side, kind of on and off, for a month, only at night-- thought I was probably just fighting something, but that it was going on too long and I should address it. My primary doc checked for inflammation-- everything looked fine and so he sent me to a specialist: an ENT (ear nose throat doc), MC Chen. MC was fairly unemotional doc, who just went about checking me in a routine way, then said, "I'd like to put a scope down your nose with some local anesthetic." Sure, I said. He found nothing unusual. "Let's do a CT scan".
"Could we maybe do an MRI instead - to avoid all the radiation?", and he responded firmly that a CT was the way to go, to start off and that I should do it as soon as possible. Despite the weeks out appointment prospects, I nudged my way into getting a CT scan that same day (by standing there at the front desk until there was an opening). At 5pm that evening my phone rang. MC Chen with a heavy voice I'll never forget, "so, I have some news.. I couldn't find anything in your throat, but the radiologist found an 'incidental finding'-- there is a 2x2x2cm lesion in your inner ear and on your cerebellum and brain stem. I think we need to follow this up with an MRI as soon as we can." Next day, MRI results come back and we are invited back to Chen's for an explanation. Michael and I sit there and see this image of my brain with a large white mass within it. I am shaking as the news comes in, in waves. I have a tumor on my vestibular nerve called a "Vestibular Schwannoma". These are usually benign and slow growing, but the trouble with mine is it's location. A terrible place for a person who is smitten with movement and sensation as I happen to be. It surrounds my right vestibular nerve (balance), it is on my facial nerve (facial mobility, facial strength), it's in contact with the trigeminal nerve-- responsible for facial sensation, biting, chewing, taste. It is pressed up against my cerebellum and brain stem (Bracium Pontis-- muscular control, coordination and movement, and against my Lateral Pons= my life. Control of the inhalation changing to the exhalation.
I feel the terror spread into every nook and cranny of my body like a slow and tentacled poison originating at my belly, my whole body shaking. uncontrollable shaking. I'm at once visualizing the most miserable physical outcome, and then to the possibility of loosing life and not being there for my Maya, seeing her, her not having a mother, losing her mother so young, Michael and Maya losing a mother. I don't want this. I don't want this! Michael squeezes my hand. I look at his face, he is pale. Eyes on the floor.
Cut to next days. HARD days. I can't seem to physically manage or contain the amount of fear that is streaming through. I want a monk to tell me what to do. I'm trying and using all my tools. Breathing, moving, yoga, showering, dancing, melatonin, calling wise elders, Netflix! Michael and I are hugging each other full bodied, like two entangled embryos, telling each other the most tender utterings. He is staying with me through every wave of anguish. Saying the most powerful words of love and commitment and level headedness and steady good old Michael medicine. Michael tells me these things are constant: he and Maya will not leave me.
Now it's a week later, and we have seen several teams of doctors (at UW and Swedish) and are consulting on what the next steps are. All of them agree that a retrosigmoid craniotomy (eek! That word Craniotomy!) is the way to go, but comes with a whole slew of possible outcomes and side effects that will dramatically shift my quality of life. For sure- my vestibular nerve will be severed to remove the tumor. I will have to relearn balance and proprioception with one remaining verstibular nerve. Dance and yoga will hopefully help me navigate this process in more detail, perhaps more skillfully. Almost certain, I'll be deaf in my right ear. The high chance maybes: I may have partial or complete facial paralysis (facial paralysis! Floppy face! please god no. I say no thank you please no no) for a short or permanent time. Secondly, I'll have major headaches from the actual procedure, and the big ass chunk of my skull they are removing to get in and will replace with titanium, the muscles that will be moved aside, touched and manipulated, etc. The small chance: bleeding, stroke, meningitis, death.
I am not a good candidate for Gama Knife radiation therapy, apparently, as with this procedure, the tumor can swell up to up to 50% larger, and with it's proximity to my brain stem, this is a no-go. It also takes away my chances to have surgery in the future if the tumor regrows, as it makes the surrounding (very important) tissues sticky, cooked, scarred and unworkable.
So now 9 days out after receiving the news. I am doing ok. I'm actually pretty good, steady, almost content. I am trying to keep the flow of normality. I am filling my life, my time, (as usual) with a LARGE amounts of movement: ("Michael, my love-- do you mind if we ride our bike to every possible activity and errand we have despite the weather, our fatigue and the darkness?") And beautiful precious friend people who shepherd me so gorgeously into an equanimous state, and dancing and smooshing my face into Maya's pot belly. By the way, muy importante is MAYA KNOWS NOTHING. and it shall be kept that way. She thinks we're going to yoga class when we drop her off for 5 hours at a friend's house. Please hold this in the highest importance. I want her world to remain unchanged and sunshine until she needs to deal with whatever comes.
I'll attempt to keep you all posted about the next steps. With much love.
- Camellia Nieh
- Heather Liou
- Katharina Tillmanns
- Brad Mewhort
- Elizabeth Hertz-Wahl
Organizer and beneficiary
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