Splayed

Here's the deal: next time you go bald, you can totally pimp out a pic of yourself sitting in the sun so your brown eyes look almost green, a photo filtered within an inch of its no-longer-celluloid life and I won't say a thing. Except great pic! You look amazing, I'll say, neither of us mentioning that in real life you can now see the wrinkles on my forehead, the crease between my eyes, the red marks and whatnot, nothing to hide but everything exposed. There--like that. 

If you look hard enough you can almost read my mind...

Because let's face it: my old hair was a slut. A big fat whore-y little slut of a hair, colored 6N brown, auburn, lighter in the spring, hot pink toward the end there--fuchsia, really, a word I always have to think of as fucksia so I remember which order the c and the s go--flat ironed and straightened so that when my hair did eventually die its fast, loose fun life I half expected to bury it in a y-shaped coffin while around me everyone giggled. Seeing as how it wasn't virgin hair, I was surprised when the clinic in Tel Aviv told me to save it when it began to fall out in clumps. 

Lest you think I am a terribly conceited woman, which I am but I don't want you to think so, that's how vain I am, here is a pic of myself mid-metamorphosis, having just hacked off big chunks using my dad's tiny little beard scissors no bigger than nail cutters. Yes, I look shocked, haggard, old, awful, like a woman in a bathroom trying to escape something horrific. Which I guess I was...

Of course this is right before I shaved it, stuffing wads of my slutty dyed dead hair into a plastic bag. The next morning when I went to the clinic for blood tests I handed over the plastic bag and thought nothing more of it. Onward and upward! I soon discovered that a good lip stain does wonders for chemo bald, and that sunglasses, as always, are my friend.

Fast forward to the evening before I left when the clinic called to say I needed to come pick up my hair. Something something always lost in translation, because huh? I pictured them giving me a wig made of my old hair and just wanted to get out of there, get on the plane and leave that country where I understood so little about breakfast food and politics. But I didn't want to be rude so I went to the clinic where they did not give me my hair, thank god, but instead ceremoniously gave me this certificate.

And a letter written in Hebrew, which Tala, the receptionist translated for me, crying as she read that my hair had been donated to a child with cancer. And I cried, too, of course, having already signed my release paperwork and a strong believer in the Irish Goodbye (or French Exit, whichever vaguely ethnophobic term you prefer). I stood there at the front desk and cried big fat bald tears while she paused at words trying to think of the right one for how do you say? I pictured a little girl with an even smaller head wearing a wig made of used hair, dyed hair, of bright hair, happy hair, of my hair. So yes I stood there not knowing how to leave and totally cried.

Today I think my hair maybe just might be growing back the slightest bit. A fuzz in the light when I catch it just so. It's like watching paint dry, for sure, how I ask Bryan and the kids 7 times a night do you think? It's maybe growing? Look, rub it. Right? Do you think?

And I don't know. Like anything it will when it does and my wondering is a joke, but I also wonder about the little girl. I assume she's in Israel, but I don't know. Jerusalem? A little girl in the middle east somewhere with hair the color of impermanence, and I can't help but wonder, pray, I guess, that beneath all the dye, all the death, all the fucksia, that her hair is growing back, too. 

xo,

S

On Promises, Possibility and The Perfect Boho Chic

In a parallel universe I think I need this shirt, these jeans, this off kilter way of standing as if I am just pausing for a moment in my charmed, lucky life to stare straight into a camera for no other reason than it is all so beautiful.

In this parallel universe I open all of my emails from Anthro and Shopbop promising, as they do, the season's best dresses for here, there & everywhere, deals on Cabo, facial peels from Groupon, my finger hovering over the buy button because, well, should I? Why not? And I do. They do. We all do in this parallel universe that is glimmering just off the periphery of my vision right now, my inbox a tower of possibility before I hit delete, delete, delete...

I don't. Can't yet. No money, but also...instead I think about a week last May when I had nothing to blog about, remember walking to the bus stop after work one day thinking I would do a post on that shopping site I had found. I mean, I had nothing else to write about, right?

And then, of course, it happened.

When I was diagnosed the neurologist told me that because my disease was relatively mild so far she thought I would still be walking in 10 years, 15, maybe forever? She couldn't say exactly seeing as how MS is the disease of no promises but countless, endless, limitless possibilities. The best indicator of how you will do is how you have done, she said, and I wanted to punch her in her stupid cookie face and add "in bed" to the end of her sentence like you do with inane fortunes, make it all a joke, because it had to be, right? A joke. The emails kept coming. Leggings to love! The latest from DVF. Big bedroom markdowns, up to 70% off!

It all kept on coming, emails, celebrity gossip, the checker at the grocery store asking me how my day was, nail polish trends and politics both office and global, but I stopped. My world. Stopped opening emails and answering small talk--god, how I hated small talk in those first few weeks, months. I turned inward and off, all those sales of up to 40% off now meds with a 35% reduction in new or enlarging T2 hyperintense lesions compared to placebo, columns of data ranging from "not statistically relevant" to "relatively safe" whatever that means, to full paleo, organ meat, low-fat, eat a plant-based diet rich in what the fuck am I supposed to do with that? I read it all and tried it all, not long enough to see if any of it worked, of course, but I researched and read, dug in. Burrowed, I guess, is the right word. I burrowed deep into numbers, theory, anecdotal evidence, clinical proof.

And now here I am having done the thing with the highest stat of them all, immunosuppressive therapy with an autologous stem cell transplant, an 82% chance of halting progression, 95% depending on which data you read, which patient subset, which little asterisk you follow to the bottom of the page, flip over to the fine print. Who even reads the fine print anyway? Terms and conditions being what they are, I won't know what my outcome is for awhile yet, if ever. Always looking over my shoulder at what might happen, in 10 years, 15. Because the best indicator of what might happen is what actually happens, how's that for cookies, Confucius?

As long as we're feeling philosophical, we might as well say that none of us knows, 10 years or 15. Will you be walking? Sick? Alive? Happy? Hit by a bus tomorrow. Please know that I don't mean to be a downer but quite the opposite, really. Maybe not knowing is freeing, the frivolity of thinking I need a pink and gold embroidered silk dress actually a balm against the unbearable not-knowingness of it all.

Because this morning, for the first time since May, I found myself clicking open on an email promising effortless dresses and flowy tops...that parallel universe floating in from my periphery the memory of who I used to be before. And while I don't think I will ever be the same again, I do think that parallel universe will edge closer, converge a bit, form a Venn diagram with who I am now at the center of it all, someone who realizes that there are no promises but countless, endless, limitless possibilities, not all of them good, but not all of them so terrible, either. 

xo,

S

Finish This Sentence: Bald Is...

I know what you want to say. What we've all been trained to say. But I don't feel beautiful, and more than anything else beauty is a feeling, don't you agree?

Now before you get all eye-roll-y on me, know that I am grateful I underwent treatment. Know that I know that this is temporary, that there are things far more important than how I look. Then tuck your hair back behind your ears and keep reading...

This is who people said I looked like before treatment: Winnie Cooper, Ashley Judd (back when she had a rounder face), Jeanne Tripplehorn, a Gremlin, Selma Ward, Debra Messing (and no, I do not approve of all of these comparisons). I was not beautiful, didn't turn heads for the right or the wrong reasons which was fine by me, but I did have fabulous hair.

This is who people say I look like now: Caillou, GI Jane, Sinead O'Conner, a Little People toy with the hair snapped off, Captain Jean-Luc Picard, Powder, a walking penis. Okay, no one said I look like a walking penis, but I think I do, i.e. beauty being a feeling and all that. So fine, I feel like a walking penis.

What is consistent with the after is that all of them are bald. Because that's what people see when they look at me now. Not woman, not normal, certainly not beautiful, but bald. And probably cancer, if they don't know my story. People look at me and see sick. It's hard to walk around a billboard for sick because like any billboard I get attention. People look, kids stare, and it's fine, really it is. Except it also kind of isn't.

So far I've only seen family, one good friend, and I ran into the mom of an old friend in Target. But soon I'm going to have to get over it and myself, see more people, all of my friends. And if this heat wave keeps up, I'm going to have to do it without wearing a beanie, because holy sweat balls running down my big bald head, people! The struggle is real. 

Oh, how I wish I didn't care. That I didn't feel self-conscious and don't look at me, but I do. It's part of the process, I guess, a phrase that makes me hate the process even more. See also: it is what it is, baby steps, inch by inch, although my hair won't start growing for a few months because of the chemo, and the average rate of hair growth is 0.5 inches/month, or 6 inches/year, so it's more like 0.5inch by 0.5 inch, not quite as catchy. By autumn I should be rocking a mean Rachel Maddow. So there's that. 

But there is also this. At night I like to bend my head down so Ozzy can pet me, his hands sticky on my scalp or my scalp sticky on his hands, not sure which, it is that intimate. He thinks it's funny, and maybe it is. It probably is. It is.

xo,
S

Day +31 The Girl In The Plastic Bubble

In this photo I am John Travolta, and you are the girl with the split ends...

In what continues to be the most botched homecoming ever, I am now home home, but I literally (the kind of literally where you overemphasize the 't' and spit it out all bitch-like) do not have a front door to walk through. 

Our front door was rotten. Which we planned to fix while I was in Israel. The door and the stairs, the whole entryway...it was going to be fixed and finished and I was going to come home to a brand new brightly painted happy orange (!) front door, the opening of which would precipitate a thousand promising metaphors. But the door guy was late. (Is late.) 5 weeks late now and still no promise of when it will be ready, pushing back the tile guy, the painter, the guy who does the wood risers on the stairs, and now my front door looks like this:

Don't be hatin' on my pile of coats, messy entry and blue painter's tape finish. In the afternoon? The plastic flaps gently in the breeze like a commercial for a feminine hygiene product you never knew you needed.

I've been home for one week and one day now, home home for 5 days, and on each of those 5 days there have been workers cutting and sanding, hammering and nail gunning. Quiet is the sound of their radio blasting a confusing mix of bolero and cumbia, depending on what time it is. The plastic is to keep the dust out, but also away from me, the haunting lady of the house who is bald and scary skinny. The workers look at me, embarrassed, and I look away because my eyelashes are seriously thinning.

Every day this week Bryan has come home at lunch to take me on a walk. My knight in shining flannel, he peels away the blue tape and pulls me through the plastic, out into the sunny open air where we walk for a bit until I get tired. Which is not long but it's something. Am I better? I don't know, a question that may not be answered for years which in and of itself kills me, someone who deals in absolutes and now, pretty please just tell me it will all be ok. But much like the metaphor of the door that is not yet ready, a lesson in patience, control, there is also something to be said for the cinematic achievement that was the made-for-tv movie The Boy In The Plastic Bubble. Spoiler alert on a 1976 air date, but in it, Travolta, the boy with no immune system, falls in love with his next door neighbor and must decide between following his heart and facing near-certain death, or staying in his plastic bubble forever. Naturally he chooses life, which in this case means stepping outside unprotected, where he and his neighbor actually ride off on her horse together (because nothing says air-borne pathogens like a herd animal galloping).

So yes, eventually I will need to make that same decision. I will have to pick up Zoey from school, take Ozzy to the park. And you will see me with no hair, thin eyebrows, sparse eyelashes, no ass whatsoever, and you will know that I have also chosen life, whatever that may bring.

xo,
S

p.s. Let's not even discuss that the real Bubble Boy died at 12 after an allogenic bone marrow transplant, ok?

Day +28 The Worst Of The What Ifs

I'm wondering when I should stop referring to my +day, also known as how many days since transplant. Kind of like when you have a baby and you refer to her in weeks, then months, not knowing when to just switch to years. I am 89 months old, 356 weeks (give or take), but +28 days since my stem cell birthday.

So where have I been?

Home, finally, as of Sunday. But more than that I've been in my head, which is a scary place to be sometimes. See, my head is home to The Worst Of The What Ifs, with What If This Didn't Work? being the most requested single on this particular album.

Very cool cloud light with lightning mode.

Of course everything is made worse by the fact that the chemo knocked out my sense of taste, so I have had a terrible time eating. I've lost waaay too much weight and keep catching glimpses of Gollum in the mirror (although Ozzy says I look like Caillou so I have that going for me). Just eat! people say, shovel it down, who cares? But it's hard, harder than you would think when you can't taste anything and your throat closes up at the sight of protein. But I'm trying.

I'm trying. Same with sleep. I am so very tired, like bodily exhausted, but actual sleep is another thing altogether. I wake up every night around 2am, and then just lay there, playing that same top hit single on repeat, turning the stats over and over in my head, recalling stories of other patients who have succeeded, who have failed, comparing my story to theirs, what if, maybe this, I never thought of that. During the day I am weak, my symptoms made worse by the weakness, by the simple fact that I am recovering from chemo. I know this, I knew this, they said it would happen. They call it the roller coaster, the year following transplant when your symptoms get worse and then better and then worse again. But feeling these symptoms is scary, and for the record, I have always hated roller coasters.

Maybe some of it is that this is where I have to put down my proverbial sword and wait...and I suck at waiting. I mean, I never really dealt with my diagnosis, the anger or the grief, the insurmountable unfairness of it all. It hasn't even been a year. I dove head first into battle mode, trying to fix it, control the situation, and now I've done everything there is to do. Have I? Surely there is something more to do than just wait? Just relax? Think positive thoughts and eat protein?

So that's where I've been. This is harder than I thought it would be, physically, although that doesn't surprise me, but mentally, too, and that has thrown me entirely. 

But I'm trying. One month, or 4 weeks, day +28. I'm really fucking trying.

xo,
S

Day +24 The Soft Launch of Susannah M.

I realize the title of this post sounds a little porn-y, but no. More like I am home(ish), as in that whole slow rise to the climax (again, porn) of me going home had a wee bit of a plot twist and I am now not home but in a residential hotel 6 miles away.

It went down like this: the night I left Tel Aviv, Bryan told me that Ozzy was sick. 3 year old sick, which means that no matter how many times you remind him to cough and sneeze into his elbow there's a my bad/diverting you with cute! look, and also the snot factor, a fine layer of it all over him like a homeopathic face mask. Plus Bryan was stuffy. Scratchy. And his parents are sick, too, so I couldn't stay with them. Which meant that right before I left Tel Aviv I made reservations at the only place near home that also has kitchens, since I have to prepare my own food for awhile, and then I maybe cried a little. Ok, a lot. A lot a lot. Then felt like kicking the shit out of that whole turning Why Me? into Try Me! because seriously? I have had enough. Deep sigh me.

So last night I came "home" to this residential hotel that makes me feel like I am in a bad Jennifer Lopez/Julia Roberts movie, you know, one of those movies in which they don't look like they're wearing a lot of makeup but you know they really are, and women go see it on a Girls' Night Out? Like I'm on the lam from a terrible ex or something, except when I got up this morning I could see the parking lot is full of Ford F350s with lumber racks, so maybe the clientele is more construction workers on the job at huge houses in Belvedere? I don't know. 

All I know is that Zoey slept here with me last night, and oh, how it was glorious! The bestest slumber party 4eva, Minecraft and braiding each other's hair (a one-sided activity at this point in time), cuddling, talking late into the night (9pm), until she woke up with a stuffy nose and tried claiming it was just from laying down. Fuck. So I am here for who knows how much longer--hopefully Sunday--but I guess the only thing I do know for certain is I am not in control.

In other news, it's raining, hard. Which, re: still not in control, but I will say I am happy it's raining. And that all the channels are in English. I am happy that I can read the product packaging, that the milk tastes like I am used to it tasting, that the tangerines are easy to peel; I am happy that 44 miles away in either direction there is no gunfire, but most of all that I'm no longer 7,387 miles away from home but 6. Just 6. For now, I can do 6.

xo,
S

Day +22 Is, Am, Are, Was, Were, Be, Being, Been (Love Me Some Helping Verbs)

The last day here, but the first day of there, both here and there neither/nor nothing but existential pronouns, not to mention the first and last which can either be adjective, adverb or noun depending on conjunctive context. I used to love diagramming parts of speech in school, and you know what word I really love? Predicate.

But wait! There's sex!

I mean, before you hit the close tab on this post because word nerd, know that today is my 10th wedding anniversary to my favoritest man in the world who just so happens to not be on Facebook and doesn't read my blog unless I ask/tell him. This guy, this boy who I have loved since I was 12, maybe 11 if we're counting the year we flirted in Mrs. Young's class.

Not a great pic, sorry Bryan, but that's what happens when you have two of the cutest kids ever. We don't ever take photos of ourselves.

The judge who married us didn't do the usual in sickness and health thing, which, well, my bad, maybe he should have. Instead he said that nothing he said could ever marry us; it was what we said to each other that would bind us together forever. And he was right, but he forgot something just as important. Because watching Bryan these last 5 weeks as he took care of the kids by himself, the way he has kept our home going, kept the kids feeling safe, kept me from losing my mind. Hell, these last two years as I lost my mom to cancer, battled the bank to save her house, was diagnosed with MS, then researched and fund raised to have the stem cell transplant. So many people have lauded my bravery, my balls, but it is Bryan who kept me together without ever saying a word. Bryan, who gets all silent Indian on me, which is what I say sometimes because he doesn't show a lot of emotion, doesn't talk a lot, never gossips, and because he is a large percent Native American, duh. It's Bryan who has been the strongest. That's right, my husband has the biggest balls of them all.

So what do you get for the husband who has, um, everything? Well believe it or not, Nadir helped me in getting Bryan the perfect 10th anniversary gift.

A page from my discharge paperwork. I am not sure if this is serious or not--you never know with Nadir. Certainly the first two are real, but the third? Nadir said it jokingly at first, at least I assumed, but then when I later mentioned that today is my anniversary he said he had to add something to my folder.

Apparently we have a lot of physical therapy to do when I get home. So happy anniversary Bryan, first, last, here, there and wherever you are, every part of my speech, predicated on everything, 2x/day, my always and forever. Tomorrow.

Love,
S

Day +21 You Know I'm A Dreamer

Guess who's going home? I mean, other than John from Toledo, Ohio. Because I am sure there is a man named John from Toledo, Ohio who is also going home from somewhere, in which case, cheers John! I'm going home, too!

Not my home but a beautiful ancient building in Jaffa.

Not today, not tomorrow but the next day. And I can handle that, not today not tomorrow but the next day, a litany to run through my fingers in prayer. I got the green light this morning so we changed our tickets and leave at the crack of finally on Thursday, connecting through Zurich so I can practice my French during our 4 hour layover. Although merde, I just remembered they sprechen sie Deutsche in Zurich, so tant pis for me. I am just so happy in all of the languages.

I'm going home!

Which is not a moment too soon because, frankly, I think my dad is getting a leeeetle cranky. Like radio too loud in the cab cranky. People stepping into the elevator before we step out cranky. A mosaic of strange smells in the hallway cranky. The kind of cranky that makes him look at people like a hawk, sharp, cutting, quick. Crank. Eee.

Truth be told, I'm cranky, too. But not as cranky as the woman who works at the grocery store who, when my dad began to ask her a question, swatted him away while saying, I know nothing! People here have a lock on crank, and that's coming from someone with an ancestry rich in ornery.

There are things I won't miss about Tel Aviv. The cars constantly honking their horns, Israeli soldiers on the streets with semi-automatic weapons, not being able to read product packaging, the commercial with Alec Baldwin that's always on tv, the one with him licking the ice cream cone, the tension between the Jews and the Arabs, the fear of violence, not being able to understand why, the alone. But then there are things that I will miss. The beauty of street signs in both Hebrew and Arabic. The colors of Jaffa, the sound of the call to prayer. Samira, Ashraf and Naveat; I will miss Hussein returning from his vacation in Thailand. I will even miss Nadir, sweet, horrible rude Nadir, who I have actually grown to really like.

So there is that, but there is also this song that has been stuck in my head since this morning when I found out. Over and over and over...while I have never been a huge fan of Mötley Crüe, I am on my way, (I'm on my waaay! *bangs head and bares tits with a shout out to Nadir*), home sweet home.

xo,
S

Day +20 To Piss Or Not To Piss (Into The Wind)?

How fitting that today is Groundhog Day, because same same with a side of same. What that sameness looks like here is this: urine test, blood test, Nadir making fun of me, asking to see my tits, me showing him my tits, me asking when I get to go home, him pulling my beanie down over my face and lifting me up into the air in a very strange side hug. 

He said that this is where we bargain. Except, of course, he does not let me speak, monkey face, shut up! No questions either, so bargaining is more like me telling him to let me talk, then just talking over him, and when that doesn't work asking him how he ever woo'ed his wife. When do I get to go home?

My numbers are excellent. He says this with an intense stare, a smile, and surely I think this week, today, now. But no, he wants me to stay until next week, something something about the last 3 out of 4 people got infections when they left too early and had to be hospitalized; I am crushed. I thought surely not another Shabbat Shalom, that I would be home in time to watch the next Real Housewives on my couch. He gives me a shrug, and I guess this is what he meant by bargaining. You want to go to hospital at home?

Well, when you put it that way.

Then I met with Professor Slavin, the BMOC, or Scientific and Medical Director if you want to get technical. Slavin said I could go home whenever. Today. But not before he politely made a motion as if I should pull up my shirt, so I did, and he looked at my rash and made some notes. With a fountain pen. I kid you not. 

So when is it? When do I get to go home?

The answer lies somewhere in a flurry of Hebrew back and forth, fast and loud. But seeing as how the only words I have picked up are yes, no, please, good morning, good evening, thank you and sorry, I have no idea what they were saying except that the end result is that I needed to pee in a cup again. You try making a sentence out of those words that means that all of this will be decided with placing my pee in a centrifuge.

So now we wait. Will the Groundhog emerge from his burrow? The lab will have the results of my pee in a few days. Or will the Groundhog see his shadow and there will be six more weeks of winter? I mean, that's a little severe. We're talking about the difference between me booking a flight for February 4 or keeping our standing reservation of February 10, but honestly, truly, those 6 days may as well be 6 weeks.

In the meantime, proof of Nadir. He is something of a chupacabra in that he doesn't allow photos of himself. But after the pissing match incident, my dad and I saw him outside of the clinic and he invited us to sit. It was nice, actually. He's funny, and as rough and as rude as he is, he takes it right back. So we sat while he smoked, throwing the burning butt into the flower bed behind him and then smoked another. At one point he offered my dad a cigarette, my dad who has smoked off and on my whole life, white knuckle quitting for years at a time until suddenly on the phone I hear the telltale inhale between words and call him out, his biceps a landing strip for nicotine patches. My dad has not smoked now for 2 years, but he took one of those cigarettes and lit up while I screamed, even pushed Nadir for giving him one. Then I took out the only ammo I had, my camera. And this, folks, is the elusive Dr. Nadir, albeit the lower 2/3 of his face as he lept over the table to stop me.

That's what you get for calling me stupid.

xo,
S

Day +19 My First Ever Vlog! Working Title: I've Got Your Vax (But Do You Have Mine?)

Okay, first of all, disclaimers:

One shot, no editing, iPhone propped on top of a tower made up of my suitcase, a toaster oven box, and one pillow.

I'm obviously still bored. 

Terrible, garish hotel room lighting does nothing for forehead wrinkles.

Apparently when in front of a camera I do the weird lopsided Drew Barrymore mouth. Sorry.

Here we go.



I would say I hope I don't offend anyone, but that would be a lie. The truth is I am angry about this issue, and if you don't agree with me then I want you to not necessarily be offended, but to at least think about it from my point of view, my immune system.

I think we have gotten so far from the reality of what these diseases can do, what they did before vaccines rendered them almost obsolete, which is killed thousands of children; we have gotten so comfortable with Walgreens and children's Tylenol that we don't even know what to be afraid of anymore, who the enemy is. The enemy here is not vaccines and it's not science; it's our own self-righteous complacency.

Anyhoo, (sideways mouth). Tomorrow I find out exactly when I get to fly home. And I'm scared. Of home. Said the girl who rides in Israeli cabs with men who shoot at boys.

xo,
S