Siamo Qui

We are here. (In Italian.) I find myself whispering excusez-moi and lo siento mucho because I know I am somewhere not home, but where that is exactly sits way back in my mind so far. Shalom. They say shalom as a greeting and I like it, love it, but I feel like a fraud saying it yet. Hello.

Hello. My dad and I went on a walk down Dizengoff and saw this guy. I like how his package is shiny, as if people pet him there like a buddha belly for good luck. (I regret not doing so myself.)

I read that in Hebrew slang they say l'hizdangef, or להזדנגף‎ which means to Dizengoff oneself, to stroll down Dizengoff as it is a street known for strolling. Maybe I will co-opt that when I get home. Let's go l'hizdangef the Depot, I might say. But only when I get home. Kind of like how I only speak French to non-French speakers.

This is just a fruit stand I thought was pretty.

Of course I'm not here to sight-see, a fact that weighs on me when I am at the Super Pharm staring too long at shelves of shampoo. At least I think it is shampoo. Everything is in Hebrew, and I realize this must be what it's like to be illiterate, all the world a mishmash of strange looking scritches. Of course I don't need more shampoo anyway seeing as how I will be losing my hair in a few weeks.

Which brings me to why I am here. Hello again. Today I got my treatment schedule, as in: shit just got real, yo. Here it is for all you curious types, medical-minded or those undergoing HSCT:

Tomorrow: Get a picc line inserted. This is not necessary for everyone, just people like me with T-Rex arms and veins the size of angel hair pasta.
Wednesday (day -6): Campath 3mg
Thursday (day -5): Campath 9mg
Friday (day -4): day off (because I will be feeling sick)
Saturday (day -3): day off (sick again)
Sunday (day -2): Fludarabin 40mg/m² and Cytoxan 60mg/kg, then Bone Marrow Aspiration. This is the big time chemo followed by them taking out the stem cells. For the next 3 days I will be staying at the clinic.
Monday (day -1): Fludarabin 40mg/m² and Cytoxan 60mg/kg. More big time chemo. I was told this would be brutal.
Tuesday (day 0): Bone Marrow Transplant. I get my stem cells back, as in January 13 will be my new birthday! They said I will feel better immediately following the bone marrow transplant, but still pretty crappy, a.k.a. there will be varying degrees of feeling really fucking terrible.
Wednesday (day 1): If all goes well and there is no fever, should be able to go back to my hotel room, and this is when effective isolation starts. I will feel pretty awful for the first week, and then around day +11 through day +14 engraftment happens, when my immune system starts to rebuild.

I was also told that my hair will start to fall out around the time of engraftment. So I will trade my hair for a healthy immune system. Side note: while typing that I flashed on there maybe being a biblical story about hair (side side note: can you tell I have never read the bible?) so I Googled it and yeah, something something about Samson and his hair as his strength and it all went down in Israel, yadda yadda, I skimmed it and hope that there is no corollary.

View from the hotel of The White City with the Mediterranean in the distance.

So that's that. Except it's not, of course. There is so much to say about the nurses at CTCI (amazing), the culture (very different), the food (not sure what I am eating, but that's cool), and beneath it all is a deep guttural aching for Bryan, Zoey and Ozzy, but I will save that for another time.

Adios muchachos,
S

This Is It.

Go time. Insert sporty pep talk here, whatever, I have never been big on organized sports but yeah. This is it, and I am scared shitless. (Though whoever came up with that lovely idiom doesn't know much about fight or flight, nervous tummy and the ilk.)

By the time you read this I will be on my way to the airport, and for all of my posturing I have to admit I am really fucking scared. I am scared to leave my family. I am scared I will get there and they will find a reason they cannot treat me (it happens). I am scared to feel horribly sick and weak. I am afraid of losing my hair. I am afraid of dying. 
But I am more afraid of having MS.

This whole BALLS thing. Well now I know what it's like to be so afraid that your balls crawl up into your stomach, because damn. I have had butterflies for days now, a constant churning. One night I had a very vivid dream that I was drinking a frappuccino made of cortisol, a whipped blend of stress hormones, and I told myself to remember to look up Cortisoluccino when I woke up to see if it had been trademarked. (It hasn't, and you can have it if you want because it tastes like metal and fear and I doubt there is a market for that.) I am sick with fear. But also MS, so here we go.

If you know me in real life, or not even, if you sent me texts or emails, wrote comments or called, whatever, please pardon the fact that I may not have gotten back to you. I cannot tell you how much I appreciate everything, but I also needed to be quiet these last few weeks, to turn inward, to drink up my family.

These guys, three people who I love more than I ever knew it was possible to love anything. We went to the beach on a day that was sunny and cold and unbelievably beautiful.

 We sat in the sand and breathed in the salt. Some of us ate raw oysters (not me).

(Not him either.)

We hung out with this big guy, an elephant seal who makes me question everything I know about both Darwinism and God. Have you ever heard the gutteral clicking sound they make? It's pure magic and slightly gross.

We also went to the skate park, because that's Zoey's New Year's Resolution, to learn how to skateboard. I love her, this girl who wrote a poem saying she wants to learn to be brave and yet fears nothing.

I watched my kids these past few weeks with shiny eyes, like how you look at a newborn in disbelief and awe, slightly afraid because you just can't believe they are real.

I was a touchy mom these past few weeks, a grabby, talky, kissy mom who blew directly into the open mouth of this guy when his pasta was too hot.

 And this--Bryan. I watched him teach Zoey how to skateboard and he was my 7th grade crush again, always. I could watch him skate forever. Or until he sits down next to me a little sweaty and we hold hands and decide it's time to go home and make hot chocolate.

So that. These photos. For the next 6 weeks I will be posting a lot probably, posting photos of everything that is new to me: a new country, new alphabet, photos of new fruits in the market, a new medical procedure, a new immune system. I will write about it all because I don't know how else to get through it.

I apologize if this post is disjointed and poorly written. It's a reflection of my mind right now, and my mind is extremely disjointed and poorly written.

For now, I leave you with this, something I wish I had written because it is so right, a perfect quote by Cheryl Strayed, from her book Tiny Beautiful Things:

"Nobody will protect your from your suffering. You can't cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away. It's just there, and you have to survive it. You have to endure it. You have to live through it and love it and move on and be better for it and run as far as you can in the direction of your best and happiest dreams across the bridge that was built by your own desire to heal."

xo,
S

p.s. Here is a photo of the "advent" calendar I made for the kids: 43 cards taped to our chalkboard wall. Each one is sealed up with a love note from me and 2 chocolates. 9 of them have a Treasure Hunt leading them to where I have hidden presents for them around the house. Fingers crossed Ozzy doesn't tear them all off within the first few days...

 

May You Always See The Wonder Of It All

2014

2013

2012

2011

2010

2008

2007

From my family to yours, wishing you the happiest of holidays and a healthy (!) New Year.

Love,
S

Headshots of Hand Models

First off, I need to know what to do with my life that would merit the title of my autobiography being Headshots of Hand Models. Other than becoming an actual hand model, because one time? I worked with this guy who had a possible fetish and he hand-shamed me by saying the crease between each of my fingers runs too deep. And now I notice it all. the. time. Anyway, I am kind of enamored with the very idea of headshots of hand models. Like this one.

Please note I said enamored and not obsessed. I hate the overuse of the word obsessed. Even worse #obsessed. Often used with #literally. #killmenow

But why focus on the negative when there is this? So much so positive.

I love him. And her. She looks like she would be a good time, no? Like you never know what she's going to say. She's wacky like that.

I'm thinking I need to write a book about this MS thing. Or is that what everyone says who is misdiagnosed for 15 years, called a hypochondriac, finally diagnosed after her mom and step-dad die, then raises money for a life-changing/saving stem cell transplant in Israel? I know. Such a goddamn cliche. But I think I might need to. It just might be the only book where the acknowledgment section is written before anything else. (Don't worry--you're totally mentioned.)

So I guess I need to know: could I get away with the title Headshots of Hand Models? Kinda' like that one friend of mine who wants to open a store called Buttons! Buttons! Buttons! only she wouldn't sell buttons at all but something else, anything else? Or should my book also be called Something Else, Anything Else? Or? ________?

While we're at it, I'm also putting together a kick ass playlist, you know, songs for when I'm feeling horrible in Tel Aviv and need to go all Eye of the Tiger on this Scheiße. So far I've got Welcome to the Jungle, maybe a little Back in Black, The Clash anything, When The Levee Breaks, Daft Punk, NWA, Happy Birthday by The Ting Tings for the day I get my stem cells back. Any suggestions for me?

Because this is happening. All of it.

xo,
S

Amazing photos from here. Except the pics of me. Photo credit for those is all Zoey. Please no comments on the unsightly deep creases where my fingers meet my hand.

My Boob (An Epistolary Thank You)

For the last 3 weeks I was pretty sure I had breast cancer.

Let's just say that if you have a faint red mark on your boob don't Google "faint red mark on my boob" because the only thing that comes up is site after site detailing a highly aggressive (and yes--rare) disease called Inflammatory Breast Cancer. I mean, if you want to grab the URL www.innocuousredmarkonmyboobthatmeansnothing.com it's totally available, is all I'm saying.

So I went to my gyno thinking that she would tell me I was being silly but instead she cocked her head and said hmm. Which everyone knows is Doctorese for You Might Be Fucked. But she gave me a 10 day course of antibiotics and said if it didn't go away with that then we would do a biopsy. So 4x a day for 10 days I took antibiotics and 104x a day for 10 days I went into the bathroom to see if it was going away. Side note to whoever walked in on me in the bathroom at work while I was looking at my boob: See? I'm not a perv. And no, my bra wasn't twisted like I said it was, we both know that.

You're never going to guess what happened next...the faint red mark did not go away after 10 days on antibiotics. So I went back to my gyno who then said hmmm. (Note the extra 'm.') She then referred me to a breast surgeon. Of course all of this happened in the stop motion time of healthcare referrals and fear.

Meanwhile, I had a fundraiser at work and another one with a bunch of friends and felt like a lying liar face who was going to have to awkwardly return all the money once I was definitively diagnosed with Inflammatory Breast Cancer and could not go to Tel Aviv after all. It was awful. I was awful. People hugged me, called me brave for my impending stem cell transplant, asked all the right questions, said all the best things and all I could think of was how to tell people I could not stop to stop my MS when I had a cancer with only a 37% survival rate. And then I would go into the bathroom to take more pictures of my boob to compare to the other 100 pictures I had taken to see if it maybe looked a little better. Or was it worse? What about when I lay down? Wear this bra? In this light? Like that.

I had the breast punch biopsy on Tuesday. Which means that my faint red mark is pretty much gone as it has been replaced by a huge nasty bruise and two stitches. And then it was Thanksgiving and I felt not so much thankful as I did fearful and made sweet potatoes after ordering 5 cute cheap beanies on ASOS because either way I figured I would lose my hair.

There's really no chase to cut to here because obviously I am ok. The breast surgeon emailed me on Saturday (bless his heart) to say that the pathology report came back negative and it was just an unexplained mild inflammation. No big deal. (His words.) So now I "just" have MS again. And I "get to" go to Tel Aviv and am "lucky" that I am in good enough health to have my immune system destroyed. And I am belatedly so very thankful for that and everything else: my family, my friends, my bruised boob that means nothing, my pink pajamas with the elephants on them, for chai tea and bell peppers, the sound of the rain as I type this. Sometimes it's hard to love life so much, to be so thankful and know how blessed I am because with that comes a constant fear that it will someday be taken away. But that is a post for another night when I am listening to The Smiths and not "Last Christmas" by Wham.

No, tonight I am thankful for my boob and for you. Because I have such an amazing community of friends--even if I don't know you know you, you are all now my true friends--because on top of everything else I have also reached my fundraising goal. And I don't have to give it back. :)

Thank you.
Love,
S

In My Own Head (As If I Could Ever Be In Anyone Else's)

So this place, this blog, it's pretty much my mind. Which is why I haven't posted in awhile. I haven't really wanted to hang out with my mind much. I'd rather hang out with a book or any Real Housewife; I'd rather sleep. Truth is, I am so freaking bored of myself and my story, this stuff that's going on. I'm tired of thinking about my health, of talking about Tel Aviv, of being the topic of conversation, even when that conversation is in my head. It seems that no matter what is going on, my mind turns to, well--here, let me show you...

Pretend Conversation You: Hey, what do you think about this whole Bill Cosby thing?
Pretend Conversation Me: I don't know. Reminds me of that time I was diagnosed with MS.
Pretend Conversation You: ?

Let's try that again.

Pretend Conversation You: Did you see Piperlime is having a 25% off sale?
Pretend Conversation Me: Really? I should see if they have any cute beanies. You know. For when I go bald. From the chemo. For my stem cell transplant. You know, the one that is ONLY 45 DAYS AWAY.

It's exhausting. And boring. And that's to me, in my own mind. I can't imagine what it's like for the people around me. So I haven't really known how to blog lately, how to keep the delicate balance of honesty with entertainment, how not to lapse into the sturm und drang of a woman on the edge of something, loading up shopping carts across the www with beanies and scarves, earrings that won't make her look like a goddamn fortune teller. 

Because for the record, here's what I think of that whole Bill Cosby thing: we will never ever know the truth, but the damage has been done one way or the other anyway.What else is there to say about any of it?

xo,
S

The Impending

You know the quiet rage of a gap in the line? Maybe you're at Starbucks in the morning (I'm looking at you Market at 1st), or you're waiting for the bus, and the person in front of you is looking at their phone and doesn't shuffle forward. The gap, it grows. And the widening space sits on your chest, tightens your mouth until all you want to say is fuck--go! (The worst is traffic. The car in front of you just kind of stopped as if thinking about something more important than forward momentum. Do you do it? Tap your horn? Your hand itching to spit out its own manual-version of fuck--go!)

Because this is how I feel all the time lately. All the world a gap in the line, and I want to tap it on its shoulder, excuse me? Push it, really. Go! This waiting. I have my flight reservations--January 2--my hotel, though there are still a million tiny details to get done before I leave...the waiting. It's excruciating, really. The fact that it's all sitting out there just a few spots ahead. Soon it will be my turn, but for now I make peanut butter and jelly sandwiches and put away the groceries, just standing here.

Meanwhile, Ozzy has decided he hates buttons. Won't wear anything with buttons which translates to an abundance of elastic waistbands and stretch, like a track suit that never sees the track. If I'm wearing buttons he recoils, then hugs me like a very uncomfortable man hugs another man. Buttons! He says the word with such derision, such absolute moral disgust that it has become my go-to swear word. Aw, buttons! My mouth full of clattering plastic and holes meant to fasten things together.

And so we wait.
xo,
S

Mother May I For The Love Of A Secret Sin Dying Between Friends: The Susannah Story, A Lifetime Original Movie

I was thinking about how this blog reads a bit like a bad Lifetime Original Movie, what with all the cancer and the grief, a woman fighting to regain control of her life so she gets a drastic hair style. It could be called "Mother May I For The Love Of A Secret Sin Dying Between Friends," pretty much because those are the key words in any Lifetime Original Movie. I was thinking that maybe I could be played by Tori Spelling, although we look nothing alike, so perhaps Kellie Martin from Life Goes On? I mean...

We both do the same wan victim look, except of course she wears her jeans much higher than I.

Then I remembered that there is a website that tells you what celebrity you most resemble, so I turned to the experts of the www because I have too much free time and am vain like that.

(Let us not mention how I picked a flattering photo of yours truly and admittedly don't look this smooth in the day to unfiltered day...)

Match: 74%	Match: 73%	Match: 73%	Match: 72%	Match: 72%
Jason Statham	Fred Durst	Ralph Fiennes	Gwen Stefani	Madeleine Albright

Only to be told that I will most decidedly not be played by Kellie Martin but rather talent ranging from Jason Statham to Madeleine Albright, at which point this Lifetime Original Movie picked up a sub-storyline in which the heroine has a touch of body dysmorphia and drinks a lot.

Anyway, because this is Lifetime and not, say, HBO, I am going with the role of Susannah played by Fred Durst of Limp Bizkit fame, my 73% match. Really, the resemblance is striking.

So imagine, if you will, it's a Friday night and you're flipping through the channels maybe feeling a little guilty that you had cereal for dinner again and something makes you pause at "Mother May I For The Love Of A Secret Sin Dying Between Friends: The Susannah Story, A Lifetime Original Movie." Before you know it you are sucked in to the implausible storyline. Girl is afraid of MS, thinks she has MS, is called crazy, her mother dies, then her step-father dies (from MS!), two kittens die (I don't know what this does to further the storyline either but it happens) and then she is finally diagnosed with MS herself at which point she realizes she is not crazy but has been right all along so she takes charge of her own health and researches a cutting edge treatment that could possibly save her life, raises the money and dyes her hair pink...will she succeed? (deep breath) Will I succeed?

Personally I would have fallen asleep on the couch already, this Lifetime Original Movie is so badly written, but on the off chance you are still watching let me explain...

There is a lot of this movie on the cutting room floor. Scenes in which Fred Durst (me) is curled up in a ball on his (her? my?) bed, scared. Scenes where Fred Durst flexes his/her/my feet to see if they are MS-y in any way, arches his/her/my neck, obsesses over symptoms and what ifs and whys. Except of course what ifs and whys are hard to show on film, so instead you see scenes where Fred Durst dyes his/her/my hair pink and says BALLS a lot (possibly bleeped over for network television). Because Lifetime Original Movies about women who just cry all the time without ever feeling powerful don't sell a lot of Yoplait or whatever commercial comes on at the break. 

But it's there nonetheless. Between all the positive posts there are moments you don't see. Moments where Fred Durst looks into the mirror up close and for a really long time, too long--you know how you can stare at your reflection so long that you actually lose sense of self? It's a strange take, his acting superb in that moment. Fred Durst stares into the mirror and you see something behind his eyes, a question, a flickering answer that he can't quite grasp. Does the pink hair complement his skin tone? Will his insurance agree to pay for follow up care? And the bigger fear behind his eyes, the one we all want to know, the hesitation before every line he reads--will he succeed?

Will I? I don't know.

xo,
S

The Impermanence of Permanent Pink & Other Colors

Some might call it a mid-life crisis hair choice, but I like to think of it as a pre-chemo-what-the-hell-I'm-going-to-lose-my-hair-in-January-anyway hair choice.

Either way, it got me carded at Trader Joe's this afternoon, which is probably more due to the fact that 42 year old women don't usually dye their hair pink, but whatever. I'll take it. A cart full of Fuji apples, caramel soy ice cream and a no way from the checkout guy who I made blush with my downright cougar-y gratitude.

Zoey, of course, wanted to dye her hair, too, and I decided to let her because we are on this adventure together. That's what I keep saying, that this is an adventure. It's going to be strange, I tell the kids, there might be parts that are scary or just plain weird, but that's ok, because we are in it together. And they look at me and ask for a snack.

Zoey chose blue. Of course now I kinda wish I had gone blue, but who knows? Maybe I will in a few weeks. Or dye it black. I've always wanted to have black hair and wear red lipstick. There is a freedom to staring down the barrel of bald.

The thing is, I've already beat MS. It's gone. I don't have it. It's just a hiccup in the space/time continuum that I actually do have MS right now, because in a few months? By February? I won't. Which means I don't now, in a way, held back only by the constraints of time. Those are the kind of deep dude thoughts people with pink hair have...

Xo,

S

Why I Can Never Go Back To That Monday Night Yoga Class Ever Again

You know that feeling when you're a little/totally rattled, trying to get dinner started, homework settled, telling your daughter that no, she can't pick out what you're going to wear to yoga because even though it's called a sun salutation does not mean I can wear a sundress? That feeling? And then Bryan (or whoever your Bryan is) comes in the front door and you pass the baton to get to yoga on time? That feeling. Well stay with me here.

Because that all happened and then I got to yoga, zipped off my sweatshirt, laid out my mat and got into Supta Baddha Konasana feeling like I had totally won that round of whatever. Aahhh. To give you a visual, this is what Supta Baddha Konasana looks like, if you're a very skinny man with hopefully soft heels.

There I was all proud of myself because I knew what restorative pose I was supposed to take to leave the day behind, Pranayama breathing the hell out of my Supta Baddha Kanasana except I felt a little cold. Drafty. So I reached one of my hands down to my stomach only to realize that I had no shirt on. I was Supta BRAddha Kanasana--see what I did there? Oh for shame. I quickly got up and put my hoodie back on wanting very much to make a quick exit except that would mean rolling up my mat and stepping over people to get to the door. Somehow getting low and horizontal felt like the right thing to do. So I did, and spent the whole class too hot and bunchy in a sweatshirt wondering if anyone would have ever told me I was doing yoga in just a bra or not?

It didn't help that it was a new yoga class for me, a step up in level and I already felt like I wasn't ready for it. The yoga teacher kept coming over to adjust me, and if you've ever been in a yoga class then you know that feeling when you sense she is coming over to you so you try to suck in your core and strengthen your thighs and--goddamn it, she's moving your knee up and back, isn't she? Don't look at me! I'm hideous! Shame spirals are hard on a Tree Pose.

Plus there was a guy in front of me who looked exactly like Russell Brand, or what I imagine Russell Brand looks like from behind doing yoga.

Like this, only the back of his head. 

The part of the class that I wasn't doing a mental Chris Farley stupid stupid stupid over my bra blunder I was wondering if Russell Brand had seen me in my bra, hoping fervently that he had already been in his own restorative pose when I came in.

It wasn't until the end of class after we had all Namaste'd the light in each other that he turned around and I saw that he looked more like Charles Manson:

As you can see, there are striking similarities, and yet there is something slight in the eyes that says that one is not someone you want to see you in your bra. Or at all. 

Which is why I can never go back to that Monday night yoga class ever again.

xo,
S

p.s. If you happen to live in my town and you overhear someone telling a story about how some crazy lady came to yoga in just her bra, it wasn't me. It must have been some other person who left the house too quickly to remember her shirt. It happens, right? Please tell me it happens.

Teresa Giudice and I Are Basically The Same Person Now

You know you've made a wrong turn somewhere when you start identifying with Teresa Giudice. But I have and I do and seriously--can you believe she got 15 months? What happened? You know she is asking herself that question, just as I am asking myself the same thing, i.e. how did this happen? That I have MS (still hard to say/write those words), that I am scrapping and scraping to leave my family to go to Israel for 6 weeks to have my immune system completely destroyed. I mean, right Teresa? What the fuck happened to us? You in your orange jumpsuit, me with no hair...

We should totally be pen pals, Teresa and me. After all, she has to turn herself in to prison by January 5 and I check in for my stem cell transplant on January 4. This Christmas will be bittersweet tough for both of us, but once we have gone to our respective "aways," we can swap stories of strange new culinary dishes, trade tips on how to get our laundry done, and cry to each other with the misery of missing our children. 

Because honestly. That is what I fear most. Not the pain or the chemo, the fatigue or the foreign country, but that my kids will think I have abandoned them. That they will feel scared and alone, not safe.

Just thinking about it makes me feel like an actual knife is stuck deep hot into my chest and I can't breathe.

So I try not to think about it too much. Instead I read Us Weekly, books, I drink almond milk and look deep into Teresa's eyes and sigh the sigh of a woman who doesn't know how she got here either.

xo,
S

Like A Gyno Exam

Once upon a time in my misspent early twenties I went to The Lusty Lady with my friends. I don't know why, really, except we were drunk and it was Valentine's Day, plus why does anyone go to The Lusty Lady anyway? So there we were, a bunch of sad, stupid girls crowded into a little peep show closet, or the quarter slots, can't quite remember except there was a woman behind a glass window in front of us doing stuff to herself and I was suddenly very extremely jarringly oh-no sober. What does that feel like? one of us asked her, and she looked at us kind of bored and without stopping what she was doing she said it was like going to the gynecologist.

God, why am I telling you this horrible story?

Even more to the point, why am I including this Prince gif?

Because sometimes/most times/all the times Prince says it better with just an expression.

I've been thinking of that woman lately, and not just because she ruined p0rn for me forever but because I feel that exposed. Asking for money. One of my friends asked me what it feels like and I will flat out tell you it feels wrong and shameful and weird and, and, and...

And who cares? This is the argument I have in my head. (Along with memories of a sad peep show, it's a real party up there.) But seriously. If it were anyone else I wouldn't think twice...that's what community is for...I've given to others in medical crisis...crises? Isis? Isil? Why does Obama keep saying Isil? Seriously, I'm a mess.

This whole thing has taken me so far out of my comfort zone, the non-religious, borderline WASP asking for money to go to the Holy Land to have her immune system literally reborn. I would say that in my family we were always taught not to talk about money but teaching that would require talking about it so that's not quite right either. What is right is that I have always hated the feeling of owing someone. Like if I borrowed $10 to buy lunch I would feel awkward until I paid you back.* And here we are and I owe you all something like $25,000 and I can't really pay you back. It makes me feel itchy.

And happy. And strong, and loved and supported and thank you, God, thank you. But weird, too, and that's ok, right? It's ok for me to involuntarily cross my legs sometimes, to inhale sharply, to stare up at the poster on the ceiling of someplace else I'd rather be--a boat on a lake or yellow dahlias in a vase--surely your gyno has that poster, too? The poster of a time after Israel, let's call it February 20, when I will again be well and we will all of us live happily ever after.

Yeah.
xo,
S

*If you're reading this and at some point I did borrow $10 for a sandwich or took your last piece of gum (Britt), please don't hesitate to tell me and I will pay you back and/or buy you a pack of Bubble Yum.

Now For A Break From Our Regularly Scheduled Programming...

Added to the list of things I never thought I would have to say to anyone: I told you not to close the Lego table on your penis! (See also: this is why we wear undies.)

Then this: trying to explain why I will not kiss that particular owie. Never ever, sparkly object--Look! It's a month old jerkified Red Vine I found at the back of the cupboard and you can have it!

And for those of you that might not have a child or a penis or both, I give you this genius life hack with Legos. 

Off to corral my cords tout de suite (that's what he said).
xo,
S

BALLS

BALLS, you guys. First off, I didn't really intend for that to become my rallying cry, but it looks like it may be, sort of like Wolverines! was to Red Dawn, only when I made that analogy to a coworker she had no idea what I was talking about so I am also old. Balls! So many of you emailed me BALLS, Facebooked me a sweet "balls", more than a few times at work I was balled in the hallway. Which sounds so wrong but is so very right.

Thank you.
I was going to let my previous post sit for a few days because its long and a lot, but I couldn't NOT not say thank you. A triple negative to mean an exponential positive. It's surprising how much stronger I feel knowing that you are all cheering me on.

Of course now I face another challenge in that after this is all said and done, I was planning on getting a tattoo to honor what I have gone through.* I was thinking maybe some deep and meaningful Hebrew lettering I may come across in Tel Aviv? The chemical compound of the chemo drugs they give me? I don't know, but right now all I've got are BALLS, and while that is an awesome battle cry, I don't really want hairy testicles forever on the inside of my arm.

Thoughts?

xo,
S

p.s. Here is the link again if you want to donate.

*I believe one has to wait at least a year after HSCT to get a tattoo due to the weakened immune system, so I've got some time.

The Truth

This is your central nervous system. Science might argue that this is everything that you are.

I beg to differ.

Fuck. I wish I could wax poetic around this post. I wish I didn't have to write this at all, but I do. For many reasons. But I would also be lying if I didn't straight out tell you that I am so scared to tell you all what I've been dealing with.

I'll just say it. 

 

*deep breath*

 

In May I was diagnosed with Multiple Sclerosis. And I know some of you are thinking "no way," that's just Susannah being a hypochondriac, anxiety, we've been hearing her being afraid of this for years...to which I say, true. And I really hate being right.

Thinking back, I felt my first symptoms in college, and then, as you may or may not know, I have had vague sensory symptoms throughout the years. Everyone told me it was anxiety: my mom, my dad, Allen, my friends, even neurologists that I went to. And when a doctor says you're wrong, that you're just a hypochondriac and crazy, then you start to believe it. So every time I had a symptom I would feel even crazier, and think that I was weak for being so anxious that I could actually make myself feel symptoms. It became part of who I am...hypochondriac Susannah, ha! Isn't she a loveable mess of a girl?

A long time ago, when we were 21 or so, Bryan and I went to Vegas with some friends and had this system for winning: we thought that if a roulette table hit on a color consistently for 7 times then the next time it would hit the next color. We played this system for the entire weekend and won big. It wasn't until later when I understood how statistics worked did I realize the system was flawed. The 1st, 2nd, 3rd or even 7th time had nothing to do with the 8th roulette spin. Every spin had the same odds of hitting red or black. Winning big was just luck.

I've been thinking of that story because what the fuck? Allen had MS, and two months after I have to watch him die I am diagnosed? What are the fucking odds? How can that be? It's just too strange. Too fucking wrong. I have been incredulous, depressed and angry, really fucking pissed off, actually, but I am slowly coming to the realization that I had just as much of a chance of getting MS as anyone else, no matter the fact that Allen had it or that I was so afraid of it. Just because you're paranoid doesn't mean that people aren't out to get you, etc.

 

Since May I've had to reinvent myself. That is, I was so used to thinking I was anxious or so empathetic-Indigo-child special that I took on Allen's symptoms, and now I know that none of that is true. I am not anxious or a loveable hypochondriac, but a maybe not-as loveable woman who is always right. Because let the record state: I. Was. Right.

So what do you do when your biggest nightmare comes true?

When I was first diagnosed in May I wished I were dead. That is hard to admit--defeat, but I felt truly defeated. I mean, I don't want to do to my family what Allen did to our family. His illness was a tragedy on so many levels. I felt damaged and flawed and embarrassed. But of course I can't die because I have 2 kids and a husband and a life that I love more than anything. So that strikes out that possibility. Then there were strong moments when I told myself that Allen was the absolute worst case scenario MS (he was), and that most people with MS do not progress like he did (they don't). I tell myself that more than any other game or story or whatever, that this is how I can teach my kids best how to navigate life with resilience, humor, courage, grace and kindness. (Then I usually tell myself to shut up because I have MS, stop being such a fucking Pollyanna...)

But seriously. Here is where things are: nothing has changed. I can still move and walk and everything. I was only diagnosed because I got an MRI for a stiff lower back and they saw lesions. And then more MRIs and blah blah blah, here we are. My neurologist says that the best predictor for how things will go is to see how things have gone, i.e. because I have so-called "mild" MS I will probably be ok. To which I say fuck her.

 

The neurologists have been wrong for 15 years now so I don't exactly feel placated. At all. MS is famous for its unpredictability. And I am not willing to wait and see what will happen.

 

So again I ask: what do you do when your biggest nightmare comes true?

 

You fight the fuck back.

 

Soon after I was diagnosed I did a lot of panic-Googling and came across something called Hematopoietic Stem Cell Transplant (HSCT). This is a procedure that has roughly a 72-80% chance of halting MS (as opposed to MS drugs that have up to a 60% chance of only slowing disease progression, but not of stopping it). While I am not sure if "cure" is the right word--semantics and all that--it is the ONLY known way to stop the disease. So call it what you will; I call it a no-brainer.

Spoiler alert: In January I am traveling to Tel Aviv to undergo HSCT.

The easiest explanation of HSCT is this: the patient has her stems cells removed via bone marrow aspiration or peripheral blood, then given high dose chemotherapy to ablate the immune system. Then the patient is given back her stem cells to re-set the immune system. Think of it like a re-boot of your computer, wiping the hard drive clean and starting over. The immune system has to learn all over again which things to fight (pathogens like bacteria and viruses) and which things to leave alone (the myelin sheath of that beautiful Central Nervous System).

HSCT is currently in Phase III clinical trial in the US, but the acceptance criteria is quite narrow as they seek FDA approval. I was not accepted. However, there are many international hospitals and clinics that have been performing HSCT for auto-immune diseases for years: Germany, Italy, Denmark, Canada, Norway, South Africa, Russia and Israel.

I have been accepted for treatment by the International Center for Cell Therapy & Cancer Immunotherapy in Tel Aviv headed by  Prof. Slavin, the man who pioneered the use of HSCT for MS. I check in on January 4th and will be there about 6 weeks.

Unfortunately, HSCT is not cheap. Treatment alone is $128,000 plus I have to stay at a sterile hotel that's connected to the clinic  at roughly $15,000, airfare, food, expenses, etc. for a grand total of $160,000. I am looking to raise $85,000 through a GoFundMe account, something I find more uncomfortable than any Bone Marrow Aspiration. But a girl's got to do what a girl's got to do, and all that...

Here's the thing: I am not yet willing to identify myself as someone who has MS. I don't want to be your coworker with MS, your friend with MS, or that mom of your daughter's friend at school, you know the one? The girl who has MS.

No. Instead, I am going to be that girl you know who beat MS.

And whatever you can contribute to help me do that, I cannot thank you enough. Please visit my GoFundMe page here.

 

Just think (this being one of my very favorite games)...this time next year I won't have MS. Hell, by Valentine's Day I won't have MS. I will be bald, but I will be healthy. And maybe, just maybe, we will look back on this and laugh a dark humor kind of laugh...remember that time I had MS?

 

Ok, hitting publish now before I chicken out.

Thanks for reading this very long post.

 

xo,

S

 

p.s. If you want to learn more about HSCT, please visit this blog written by a scientist who had the treatment done for his own Secondary Progressive MS and now dedicates much of his time to informing others--I wouldn't be hopeful like I am without George Goss.

The Science Behind The Treatment

Summary of Treatment Facilities (dated 2011) 

 

p.p.s. Let me know if you have any questions about my diagnosis or the treatment. I want to be open about this in the hopes that it might help someone.

 

p.p.p.s. So let's say you do work with me. Or we're casual friends somehow and I see you tomorrow and there's that weird awkward thing where I think that you might know now and neither one of us knows what to say...yeah, that moment. To that moment I say hi. I am totally fine being out now. Yes, it's scary as hell, but I feel stronger the more people know. So let's have a code word, maybe, something to break the strangeness, and let's have that code word be BALLS. Because this takes BALLS, sure, but also because saying BALLS apropos of nothing makes you smile and because when BALLS enters a room there's really nothing more to say except to shrug because, yeah. BALLS.

xo (again),

S