Thursday, December 11, 2014

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.


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.

Sunday, November 30, 2014

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 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.

Thursday, November 20, 2014

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?


Friday, November 7, 2014

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.

Tuesday, October 28, 2014

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
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.



Sunday, October 19, 2014

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...


Monday, October 13, 2014

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.


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.

Wednesday, October 8, 2014

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.


Thursday, October 2, 2014

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.

*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.

Monday, September 29, 2014

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).

Tuesday, September 23, 2014


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.



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.

Sunday, September 21, 2014

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 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.
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.
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),

Tuesday, September 16, 2014

How Do You Answer The Rumors That You Are A Silly Bitch? alt title: Liebe meine Apschminki!

Things are getting a little Sprocket-y around here what with The Unspoken Thing and deaddays (which is the opposite of a birthday, duh). Have you ever thought about that? How every year you pass by your own date of death without even knowing it? Like maybe years from now you will die on September 16th and here we are--today is your very own deadday! Shit. Blow out the candles because there I go again.
Wait. I can fix this.


(Subhead: Kittens That Aren't Dying!)

We got a new kitten. Make that kittens. Which makes me a crazy cat Sprocket lady, but that's cool. 

Meet Cinque, pronounced Cheenkway, Italian for 5 because he's the 5th cat Bryan and I have had together.
And this is Ike. Pronounced Ayiiikk, as in Not Turner but Eisenmann, the child actor from Escape To Witch Mountain.* 
*Not really, but side note: my brother was a dead ringer for that guy when he was little and used to get asked if he could move things by playing a harmonica which really confused me/shattered my soul because no one ever asked me if I were Kim Richards and I subsequently tried very hard to talk to animals for much longer than I should have just to prove them all wrong because I really was Tia/Kim Richards in my heart of hearts and now she is my very favorite on RHOBH. Team Kim! slash Me!
So yeah, kittens. I mean, KITTENS!

Now let's just hope they don't die.


Friday, September 12, 2014

This Time Last

A game I like to play. This time last week I was at work writing about makeup. This time last month I was on vacation. This time last year I was holding my mom's hand.

But this time today I have butterflies in my stomach. Isn't that strange? Of all the things I thought I would feel, I never once thought I would be nervous.

This is what I remember: she had not spoken for days, maybe a week. Had not eaten. Her eyes were not really closed. The Hospice workers told me they had never had someone hold on for so long, and this made me feel both proud and sad. I wanted her to know that she could go.

I remember pulling the sheets up at the end of her bed and feeling like I was doing something I shouldn't be doing. But I had read that the skin gets mottled before death, the palms of the hands and the soles of the feet. So I pulled the sheets up and held her feet. They were purple and blotchy. I went out to tell the Hospice workers about her feet and that I was going home to get some stuff so I could spend the night there, but they said no, her breathing was not yet rattled. They said I should come back in the morning and plan to spend the next night there. So I kissed my mom and left.

This is what I regret, that I was not there for her when she passed. I should have been there, holding her hand and not so concerned about the soles of her feet.
This time today it's been a year since. I try to remember her strong, happy, her sense of humor, her wit.
Dressed as Nurse Ratched for Halloween.
Here. Here is a story I want to tell about my mother. (If you are my dad, however, or even my in-laws, you really probably don't want to read this next part.)

(Trust me.)

One night a long, long, looong time ago Bryan came over to my house to help me with a speech I had to give in my senior high school Humanities class. It was about Bruegel, the Flemish Renaissance painter, which really has nothing to do with anything except maybe The Seven Deadly Sins. At the time we lived in a house with Jack and Jill bedrooms for my brother and me, only my brother was in college already. So Bryan and I were in my room with the bedroom door closed and locked doing something we really shouldn't have been doing but we were doing it, or I should say *I* was doing it to him, when all of a sudden I felt Bryan's body stiffen. Like his entire body. It all happened so fast, but I looked behind me and saw my mom's reflection in the bathroom mirror. Shit! Shit! Shit! It was like a funhouse reflection of ohnononononothisdidnotjusthappen. She had come through my brother's room to tell us something and instead saw something. Of course she turned and fled, leaving Bryan and me scrambling to get dressed. Bryan was freaking the fuck out, saying he was never coming over again, that he was going to leave through my window, etc., etc. when all of a sudden a folded up piece of paper slid beneath my door. I unfolded it to read:

Dear Susannah
Please know that I will always love you, no matter what you do. And I will never tell your father what I just saw.
p.s. Bryan's tips on how to give a good oral report are better than any I would have come up with.

And that, my friends, is how witty my mom was. I opened my bedroom door and she was standing there laughing and gave me the biggest hug.

So yeah, I just honored the memory of my mom with a story about me giving Bryan a bj. But we're married now so it's all legit, plus my mom always loved that story even if we couldn't really look each other in the eye when talking about it.

Now I'm off to go back to bed, another way to honor her. If you don't believe me that lazing around in bed on a beautiful sunny day is a way to honor her, is a Valentine I found that she made. For her bed.
Also, if you knew my mom at all in real life, just watch this video of Bette Midler signing The Rose and you can truly sense my mom. She loved to play this song on the piano and sing it. She had the prettiest voice. So this is how I am ending this post.

This time last to this time next and forever. I love you I love you I love you, and I miss you so so much.


Sunday, September 7, 2014

In Other News: Sometimes That Is Enough

Remember when I used to post stupid stuff about vaginas and leopard print coats and it was 2007 or 2010 or somewhere in between when I thought turning 37 made me old? I know. What a total lightweight I was.
Which is why I'm posting this pic today. Because shit is about to get heavy in here, like when the news reports that a storm is coming and you look out the window and even though the skies are calm you know it has to be coming if they say it's coming. So I'm thinking it's coming? Friday will be the one year anniversary of my mom's death.

Which might be why lately when I have wondered what time it is I look at the clock and when I look away I still don't know what time it is. So I look at it again and I still don't know, and when I look a third time and someone asks "what time is it?" I have to shrug and say "I don't know." My head is slow with sand and what, and the only thing I know for sure is that even though it's not 2007 or 2010 it's time to look at this photo and giggle because, indeed, there is a vagina on his neck and sometimes that is enough.


Wednesday, August 27, 2014


I read something the other day that absolutely felled me. It was simple, maybe a little stupid. It was this: There was a day your parents put you back down and never picked you up again.

I thought about that obvious little sentence for the better part of a day, turned it over and thought about how one day I will put my children down and never pick them up again. And then I lifted Zoey who is almost as tall as I am and kind of cuddle-dragged her to make a sandwich with me, hummus and greens, lots of mustard.

I know. How can I be gone for over 3 months and come back with no explanation, talking of mustard?

We'll get to that later.

Today was the first day of school, so there was also this:
 And this:
 And of course:
Third grade and preschool, the smell of fresh paint and new backpacks, things that make me feel clasped and familiar.

But that. The other. I know. I don't mean to be coy--I detest coy--I swear I will tell you soon. For now I will just say this: there was a day I was put down and never picked up again, but I am trying very hard to pick myself up, and I thank you for your kind comments and emails. In the meantime, let's make friends with the elephant in the room. He's really quite nice.


Sunday, May 18, 2014

¡Mucha Lucha!

¡Señoras y señores! Today we had a birthday party for the one, the only, Ozzy "Tres Años" el Guapo Mas Fuerte.
The party was el Luchador-themed, natch, and the morning leading up to his party Ozzy ran around the house naked with nothing but his mask on. Of course I tried to take a pic, but he must have sensed a slideshow 30 years from now when I would totally show it at his wedding. (I am going to be the best/worst mother-in-law.) I ended up having a total Gypsy Rose Lee moment just to take the above photo, promising lollipops and another cupcake if he would just show me his muscles. He refused, so you get this, Lucha Irritado con su Madre. Ah, mi amor.

But my dad complied. I owe him and his girlfriend a cupcake + probably an apology for going public with their especial-ness.
Ozzy's real birthday isn't for another 2 weeks, so yes, there will be a schmatzy birthday letter to my little kind-hearted luchador. 

And now for a real Piledriver (I don't know how else to segue from Mexican Wrestling to this)...

Chachi died last week. Last Monday. I came home from work to find that the FIP had progressed so rapidly that he could no longer walk, and one pupil was larger than the other which meant that it had gone into his neurological system and brain. I didn't want him to be in pain, so we had him put to sleep. There are no words for losing him, truly nothing. But this--
He was such a sweet, sweet boy, and we were so lucky to have that furry little belly to rub while we did.  

Now go love on your own fur babies, or hug your kids, or if you don't have either just rub your own belly. In Chachi's memory.