Day +18 What If?

 

What would you do if you got a do-over? Sing-songy high and gleeful from a playground like that, DO-OVER! The chance to not make that mistake, the chance to undecide the bad decisions, or even the chance to do the things you didn't do but should have?

I've been thinking about that lately, mostly because I have not been able to sleep here in this strange bed with my stubble-headed scalp sticking and dragging over the pillow like an old set of felt Colorforms, but also because I have gotten as close as can be to a re-do. A reset, really, of my immune system, sure, but what if I took it further?

What if I decided that now is the time to lie and tell people I am extremely allergic to fish and mushrooms just so they'll stop pushing forks at my mouth because come on, try it, you'll love it! (No, no I won't.)

What if I decided that I like people now, like right away, strangers, friends of friends, my gut instinct now that you are going to be everything I love in a person instead of holding back, wary, inwardly sighing, waiting until I can get away, because really? What if I just liked you?

What if I ate a salad every day, and I'm not just saying the top layer of nuts, cheese and fruit, but the whole thing, dry leaves and all?

What if I dressed only in bright colors?

What if?

What if I stopped letting fear make my decisions, to live, to work, to write that book I've always wanted to write? 

And here is where it gets scary, of course, where my brain reflexively sucks inward to protect itself like a throat closing up around a large, dry pill, because what if it didn't work? This whole thing? The stem cell treatment. The salad. The people, because most people do kind of suck, don't they? Right? What if I wrote a book and it was terrible? And I still had MS? And I looked terrible in yellow.

This is a post with no resolution, just a bunch of what ifs on the 18th day of my immune system, a day when we went to the beach and watched schools of little kid surfers on foam boards get pummeled by waves and stand up again laughing.

Tomorrow I go to the clinic for blood work, the results of which should tell me when I get to go home. My dad and I have placed bets; my chip is on Thursday. Already they have removed my picc line, a process that turned my stomach as they pulled the cappellini-sized catheter from somewhere near my heart and out of my arm like a hair pulled out of butter.

But that's just a guess, Thursday, a what if it was? And I got to go home before the next Shabbat Shalom? Allergic to fish? And right away I liked you, whoever you are, my opening line to my new stranger friends, what would you do if you got a do-over?

xo,

S

Day +17 It's All Over But The Crying

This photo is NOT from today, but from another cab ride, another driver, another day entirely. I just had to take his business card because--want a ride? Yeah, no.

Something is wrong with me lately, or right, I don't know. I am so close to tears all the time. It's probably because I miss my family so much I feel as if I am starving. Or that I went through such a scary medical procedure. Or maybe it's because I am in this country surrounded by everything that I will never be able to understand and it hurts, it's too much muchness; I want to go home.

Today's cab ride was the most intense one yet. I actually stumbled out of the taxi blinking into the sun as if I had been somewhere dark for a very long time. I didn't get his name--God, I wish I had asked him his name--but the driver was this very nice man who told us how hard it is to shoot a 16 year old kid when all he wants to do is swat them on the behind. He was in the army, as all Israelis are, he fought in Gaza in the 2006 war, and now he volunteers because, well--country. He told us how sometimes he doesn't know how to shoot the younger Arabs but he does because he has to. I don't even know how we got started on that.

Yes I do. I was telling him I needed to find a present to bring my husband from Israel, and said I would maybe get him a shirt from one of the surf shops down at the beach...has he ever surfed? Once, he said, once I surfed in Gaza but stopped because the Arabs were shooting at me.

It unraveled quickly, the conversation, fast and real and wow to us, but to him it was nothing. Just small talk in a cab about how he has one son, 17, who will go to the army next year, and 3 daughters, the oldest 15, who will also go to the army when she turns 18. Then he told us that he prays every day that he will get shot while fighting because then his kids won't have to go to the army. He thinks. Shrug of his shoulders.

What do you do? we asked, a stupid question for most cab drivers. But no, his job is to blow up houses. This one house? he said, in Gaza? The family had just bread and water, so he gave the children his army rationed food and told the parents to take them outside while he blew up their house. See, Hamas pays people $1/month to allow them to carve tunnels beneath their houses, and there was one such tunnel hidden under a carpet in their kitchen, so he gave the children food and blew up their house. I don't know if I have the details right, $1 a month, per week or just a one-time payment, but the rest is exactly what happened.

We asked if he had any Arab friends and he seemed to think about it for a minute, probably not running through his list of friends to see if any were Arab, but to think about something else, I'm not sure what, before he shook his head no. No, he has no Arab friends, but he speaks Arabic! They teach it to you in the army, he said. He speaks English, Hebrew, an Indian dialect, something else I can't remember, and Arabic, although you don't speak Arabic to them until after you have shot them.

They have so many places to go, he said, Lebanon, Syria, Egypt, Saudi Arabia, Jordan, Yemen, he rattled off more,...but Israel is a small country.

And the Arabs, they use children as shields.

He told us that he witnessed a miracle once while fighting. He had taken his tefillin, which is a small black leather box containing scrolls of parchment inscribed with verses from the Torah, and strapped it to his upper arm making it a shel yad so that it was closer to his heart. An Arab shot him that day, the bullet hitting and lodging into his shel yad, otherwise it would have hit him in the chest. Now he prays every day.

For what? Do you think there will ever be peace? we asked, 3 Americans in a taxi. No, he said, but as we drew closer to our hotel he said apropos of nothing, tomorrow will be a good day!

I'm not sure how, but when we got out I said I wish you, your family and your country peace, which I realize was redundant because he is his family, he is his country. 

And there will never be peace.

I have been thinking about how sometimes on this intersection near my house there is this man who stands there with handmade signs about Palestine out of Israel! Or Israel out of Palestine! Honestly I don't even know what the signs say, have always shaken my head silly because I don't have an opinion, don't know enough to even enter the conversation, don't care honestly.

And now I'm here and the Arab nurses are the sweetest people I have met. They rubbed my back while I couldn't hold up my head, spoke softly when I couldn't open my eyes; they are so gentle when taking blood and the way they change the dressing on my picc line--respectfully, reverently, lovingly.

After the cab ride my dad and I had a long conversation about Hamas and Hezbollah, Bashar al-Assad in Syria, the PLO, Netanyahu, Muslims, Jews, settlements, which came first and who will go last. We pulled up maps and he told me about the regions and religions, but he couldn't tell me what was right. No one can. Nothing is right. There is just this never ending snarl of hatred that makes me cry in taxi cabs. 

And at supportive emails that people send me. Photos of my children. Innocuous (nice!) comments on Facebook, commercials, movies, memes. I am crying right now, as I write this, and I don't know why really, except that the Arabs are the ones who held my hand.

xo,
S

Day +16 I Need You To Give Me Head...Help

You all know I am a planner. And vain. So naturally I've been planning my post-chemo look for when I return to my real world. I'm thinking headscarves, part Jackie O with oversized dark glasses, a little Brigitte Bardot, some vintage Sophia Loren with maybe a little Halston-ized Ali MacGraw for good measure. And because I have just a wee bit of time all by my lonesome to do things like repeat whatever the tv is saying in Hebrew and draw on my bare scalp with lipgloss, I also took some time to see how do-able this old Hollywood me would be, i.e. I am totally fucked and need your help.

Granted I have only very long rectangular scarves with me, but come on. I look like Mother Theresa after a bender. It's no better without the oversized Jackie O's, either. Bless you, my child...

So I thought okay, maybe I need to do more of a wrap? I don't know. Of course I never even knew how to "do" my hair when it was long, despite hours of YouTube milkbraid tutorials and chignon how-tos, I always ended up with a wooden hair stick holding it all together. Anyway, meet Girl With A Pearl Earring (Up Her Ass) because for some reason I look pissed off and a little Patty Hearst.

I mean, we are so far off here that I may need to remind you of my inspiration...

This. Jackie O. was just so oh. I even went so far as to try to find a photo of her when she was undergoing chemo for her own cancer; I thought there might be something fabulous I could crib, but strangely (and mercifully) there really aren't any pics of her sick.

And then there's Sophia. Insanely aspirational. God I want to be her so bad.

And mon dieu, Bardot.

I guess maybe I fancy myself as someone of indistinct European heritage, a little Italian, French, Slavic bone structure, almond-shaped eyes and olive skin, instead of who I really am: a round-faced Welsh girl with Scottish and German mixed in for extra hardiness. 

I also think the problem is that my inspiration photos all include hair, even if it is covered by a scarf. Believe me when I say I thought long and hard about a wig, and by long and hard I mean I have 6 of them in a shopping cart somewhere online. But here's the thing: even in a good wig, one with real hair, lace front, hand-tied (that's right, I now speak the lingo), I would still always feel a bit like Raquel Welch. And I am just not a Raquel Welch kind of girl.

From the Raquel Welch wig line...

Then there are the other options. The head coverings meant for post-chemo. And oh, how they are depressing. Check out this bad boy...honestly not sure if it is meant to be a wig or a hat but it looks like ball hair, plain and simple. 

So I return once again to something not meant for chemo per se, something Hedy Lamarr might have worn if you want to go way back, or Lauren Hutton who can do no wrong in my eyes. And this is what I found:

 Missoni Turbans in a multitude of amazing zigs and zags...

Oh how I want! (I want so badly that I, too, am staring at a stray Xanax that someone must have dropped there in the corner. What is up with these models?) 

But!

But they cost $300 each. And I just can't. I mean, that's stupid, right? Right? (If just one of you says I should buy it I will. Sshhhh.)

I mean, really I can't.

So I spent another 6 hours window shopping online: Free People, Urban, Anthro, Intermix, Shopbop, Topshop, Asos, Ruche, Modcloth, Revolve, Piperlime (soon to be RIP), Nordstrom, Saks, Polyvore and more, because apparently headscarves are in, even turbans to a point, but only if you have perfectly mussed long hair, pouty lips and no hips. Still, no dice.

My best finds were on Etsy. I'm digging this scarf, but have little faith I could actually style it to stay on my head.

Same with this one. Could I do that insouciant side knot? Je ne pense pas.

Then there's this, which I like, in theory. Except it's got a little snood in the back, and I object to snoods both because the word itself (snooooood) and because they look like you have no butt on the back of your head.

Ok then, what about this? Too Madame Tussauds severe? I'm kind of thinking yes? But if I were smiling maybe? I don't know. I'm not a big smiler.

Or this. Boring. But good in a tending to the fields kind of way.

Ugh. You guys, I am not even remotely exaggerating when I say that I have spent 20 hours on planning my post-chemo look, and I am no closer now than I was 3 days of internet browsing history ago. 

This is where you come in. I need your help. Places to shop (online)? To turban or not to turban? How to tie one on (a scarf)? Or even just mental help, as in good lord, crazy lady! Get a grip and shut up about what you will look like! You got a reset, a re-do, you are healthy! Now shoo!

xo,
S

p.s. Seriously though. The Missoni Turban? With no hair peeking through, would it look like a swim cap?

p.p.s. I am hoping I/we need to figure this look thing out stat as my numbers today showed that they are rising! A week? 10 days? Nobody will tell me, but this is what I am hoping.

Day +15 A Post 4,000 Years In The Making

Today we visited Jaffa, the 4,000 year old city at the southern tip of Tel Aviv. Let me just say, Pharaoh Thutmose III, The Phoenicians, Babylonians, The Crusades, Philistines, Sultan Selim I, King David, King Solomon, King Richard (the Lionheart), the Book of Jonah, Joshua, Ezra, plus the myth of Cassiopeia and Persian Rule for good measure. You know the one about Demosthenes? He might be the only historical figure who has nothing to do with this, but he was the Athenian orator who suffered from a speech impediment. According to legend he stuffed stones in his mouth to practice his speech, and what this has to do with Jaffa is only that I feel as if there are now rocks spilling from my mouth, the history of Jaffa so full.

And now so is my head. I cannot even begin to touch what I saw today, from early antiquity to the Bronze Age, the Iron Age, from the Hellenistic period to the Byzantine, Medieval, the Ottoman Empire and British Mandate. Hell, even Napolean showed up in Jaffa in 1799 to ransack the city and massacre thousands of Turks, just because he was a dick like that. Then there was the bubonic plague. I mean, you see it now, right? These stones just falling from my mouth like teeth in a recurring dream symbolizing transition? And you're also naked?

So instead I will show you this, bracelets I bought including an Israeli gold bangle and a little evil eye action. I do love haggling...

 

And this, because. Well let's not even pretend this post will be anything but disjointed. (Not my fault: see above history.)

Saint Peter's Church. It was built in 1654 in dedication to Saint Peter who raised one of Jesus' disciples from the dead. (!!!!) (Thrown in there all casual-like.) The church was first built over a medieval citadel, then twice destroyed and again built in 1888. It remains on the hill above the shore, a beacon to pilgrims that The Holy Land is near.

I will tell you this: I am not a religious person per se, but every single time I go into a church I cry. I remember this from traveling in Italy, Prague and France. I don't know what it is. Past life perhaps? But my chest feels heavy and I cry, both because the churches are so beautiful and because I don't understand how something so pure, the love of a god, can be responsible for so much violence.

And then there was this: the sudden (to me) call to Muslim prayer.

I was stunned. And again cried. I guess I had never really heard the Adhan, or call to prayer, droned out from a minaret, no less. It is the recitation of the Takbir (God is great), followed by the Shahada (there is no god but Allah). Please ignore the Yanni-like street musician who insisted on playing his schlock straight through the call to prayer. I thought it was a little disrespectful and gave him a dirty look or three, but he couldn't have cared less. You can see the white city of Tel Aviv as I pan over, and to the right of the minaret is an outcropping of rocks in the sea where Andromeda was stripped and chained in sacrifice to sate the sea monster Cetes.

I mean. Stones from my mouth, all of it. And I am not even coming close to anything.

So let's take a break and look at me and my dad. We are cute. And so very waspy.

And this cat. There are approximately 2,000 feral cats in Jaffa, and each one of them is also 4,000 years old, I am sure.

Had I a normal immune system I would have maybe given each one a little scritch, but yesterday's hummus got me into enough trouble so I stayed far away.

Which reminds me: before you all freak out that I even went to Jaffa, please know that I was given permission by Ashraf, the nurse. I was told not to eat anything (I didn't), and to wear my mask and gloves when in taxis, crowds and shops (I did).

Speaking of which.

I swear I only ducked in here quickly for the photo, but wow. It really summed up the history with the assortment of kippah, crosses, hamsa, nazar, vials of holy water and inexplicable Russian nesting dolls. Sadly I hesitated at a shelf of 100% pure argan oil for hair, and then remembered and left.

On our way home in the taxi we stopped at a red light. Our cab driver was blaring his radio in Hebrew, and the van next to us was blasting something that sounded again like Middle Eastern prayer. Many of my friends have asked me about the political tension, if I feel safe here, and the answer is not even close to simple. I thought for a second, there at the red light, that maybe this is how it happens. The sudden, the nonsensical, the bombing or the gunfire, the stabbing on a city bus. Certainly there is little to no foreboding. Just a red light, and then.

The cab drivers here all talk politics. Everyone does, actually. Bibi (thumbs up, yeah?!), the election, Arabs and Jews, Obama (thumbs down, frown, yeah?), Europe, now Lebanon, Islam, "the conflict," as they call it. And I realized that here there is no luxury of not caring. At home we talk about entertainment, food, what we're doing this weekend. There may be the odd debate over something vaguely political, but it is done politely, sometimes humorously, and we move on to whatever Kanye said about himself. And quite frankly, where I live, when we talk politics it is only to agree.

So do I feel safe? Maybe I was wrong to have that thought in the taxi today, just two radios blasting against each other in traffic. Maybe it was naive or ethnocentric, stupid with the "stu" part tight as if you're cramming it down into a straw. But it was a thought nonetheless, after a day spent in a city spanning ages and empires where I couldn't help but look down at the stones that made up the street and think that both statistically and inconsequentially, how someone once must have died there on the stone that I was standing on, fell in love, got her heart broken, yelled at someone, ate a piece of chicken, farted, sang a song, laughed, cried, how one time I am sure someone stood on that exact same stone and thought for sure, yes, I mean I think maybe she felt safe? But still wanted to go home, wherever that was, because home is always safest of all.

xo,
S

Day +14 Inshallah

I knew we needed some fresh air when my dad repeated the word "coitus" over and over and over. It was because there is a mystery room that we can look into from my room, not a hotel room, but some sort of meeting room, we can't quite figure it out. We were eating dinner, chicken sandwiches, when my dad began to narrate that the way the man touched the woman's leg in the room across the way suggested something post-coital, so I told him never to say that word again. Coitus coitus coitus coitus, he said, just kept saying it, both of us punchy with counting down the days while also counting up, day +14 from my bone marrow transplant but no set date to leave yet, coitus coitus coitus coitus, from a family that coined its own word "geegee", hard g, meaning anything that can happen when you don't keep both feet on the floor, i.e. shut up shut up shut up shut up. Also? This country puts waaay too much mayonnaise on their sandwiches, and we were grouchy, silly, homesick.

So today we escaped in the form of a cab down to the beach, me with my mask, sunglasses, latex gloves and a sense of freedom. The sand here is spun sugar, the constant helicopters a little disconcerting as they look nothing like Coast Guard, but still, I could breathe salt air and was happy.

We ate lunch at a little restaurant on the beach, and it was everything I thought the food would be in Israel: falafel, hummus, tahini, pita and fresh mint tea. This is the way I love to eat.

Of course when I told Nadir later he called me stupid girl, the "stu" part tight as if you're cramming it down into a straw. Stupid, stupid girl. Either you don't listen or you're too stupid. I said no hummus! It is full of bacteria. And then he asked to see my tits, which is his way of saying he wants to see if the rash on my torso is getting better. Part when in Rome, part I just don't fucking care, but it doesn't bother me. I showed him my tits and my rash is getting better.

No real way to get from there to here, but here, here is a photo of my dad, his girlfriend Deirdre and me on the beach, the Mediterranean behind us. It never fails to amaze me to imagine the globe, a map, and this tiny little dot way off in the middle of somewhere I never thought I'd be. But here we are; here I am.

And here is where we are going: tomorrow I don't have to go into the clinic. I get a day off, so we are going to venture to the old city of Jaffa, an ancient port associated with Solomon, Jonah and Saint Peter. Which means tonight I need to read up on exactly who Solomon, Jonah and Saint Peter were, but whatevs. Because then the day after tomorrow this stupid, stupid girl might actually get her picc line out, and we all know what that means. Or we don't, but I like to think it means I am that much closer to going home. 
God willing.

xo,
S

Day +13 Qwerty, And You?

Today was a white crayon on a sheet of white paper. It was Dora the Explorer blinking at you, waiting for an answer. Today was actually reading the Terms and Conditions. Watching paint dry, staring at the wall, clichés...today was playing the quiet game all day. By myself. And winning.

Today was a day so boring that I am going to say something really offensive, against my better judgment, mostly because it feels true. I feel like Anne Frank. Now before you get all tar and feathery on me, please know that I know how immensely horrific the Holocaust was, and that my situation is nothing like it, my life not really anything like Anne Frank's life. It's hard to make the comparison, especially here, because wow, what an asshole thing to say. But it's like this: today my dad and his girlfriend (she flew in for support) went out to lunch with a friend of my great-aunt Kay, and I sat in my room and waited for them to bring me food. It's like that every day actually. My dad brings me bananas or crackers, hummus, more water, sometimes chocolate. And the waiting for him is excruciating. When he finally comes bearing a roast beef sandwich I call him my Miep and feel bad telling him I hate red meat.

(Ok, so maybe it's better to say that I feel like Cathy from Flowers in the Attic, except sans incest and hopefully without the arsenic. The point being, this sucks and I am bored out of my fricking mind.)

Then again my temperature is also 37.5°C, and I have been told to call the clinic if it goes over 38°C, in which case I might need to go to the hospital in Jerusalem, and what I know to be the most true of all is that I do not want to go to the hospital in Jerusalem; I do not want any complications. So I drink more water, take some אופטלגין and some אקמול , and wait to hear all about the painstakingly difficult decision-making process of someone picking out what type of wallpaper to get because that's all I have to endure now.

Boredom. Luxury really.
xo,
S

Day +12 How Many Times Per Hour Can A Rat Copulate?

Not to make you feel inferior, but 40.
40 fucking times, that's how many times a rat can copulate per hour.

And if you're wondering how this is germane to Israel or stem cells or the price of oil, I will tell you: it's because in my medically-imposed bubble I have become addicted to an app called Trivia Crack. I play at all hours of the day with people I know, sure, but more often than not with complete strangers. We meet up in the dark alleys of the www and spin the wheel of stupid facts. Quite frankly, I am so bored that had there been an app for actual crack, I would probably be doing that, too. (Note to Self: don't search to see if there is a crack delivery app because there probably is.) (Addendum to Note to Self: if no such app exists, it may be a good business opportunity; the name could be Get Whacked, an homage to Whitney Houston. Funny/not funny/too soon?)

In other news, I was leaving bristle-y whiskers all over my everything, like maybe I had a creepy old man watching me sleep, so I took it down a notch. Or seven.

Figured might as well, it was going to happen anyway, the water's warm, and all that.

Except of course it's not. My head gets cold now, and since I spend most of my time alone I have realized that overwhelmingly my thoughts are in the flat monotone of the original SNL Coneheads. It's unsettling to say the least.

Now for the serious. I managed to get a peek at today's blood work, mostly because I just flat out asked, and here it is.

No offense, but probably 98% of you don't know what any of this means. I sure didn't. Basically, the numbers to pay attention to are my monocytes% (now at 27.4), and my neutrophil number, now at zilch. No neutrophils means no home, and I have begun to ask that question a lot, can I go home yet? Like a wheedling kid who hates Camp WinnaImmunebow so much she starts to fuck up her lanyards on purpose. So today they gave me the first of twice daily neupogen injections, a stinging little mofo of a shot that actually comes with a spring-loaded needle. Hopefully this will stimulate my bone marrow to make white blood cells, and I can go home in about 10 days.

In the meantime, there is this: What builds a domed nest? The Ovenbird, and if you tell me you knew that just off the top of your head I am going to stab you with my God's Eye.

xo,
S

Day +11 Second Verse, Same As The First

Some of you/one of you asked to see a photo of my father, and I realize I have done a huge disservice not featuring him more during this jaunt to beautiful downtown Tel Aviv. It's truly not just me being brave here; my dad is also being rather courageous. After all, it is he, The Waspiest Man In The Promised Land who gives back slaps rather than real hugs, it is this man who takes my skivvies to the laundry. It is this man, my dad, who held my hair while I first puked and then when there was nothing else just retched over and over and over into that bucket that smelled of dead spit and sick. And it is he who takes me on my daily walks like a dog, only pretending he didn't know me that one time I had to go pee so bad.

So here we are. Mr. Indiana Jones/Peter Beard/Clint Eastwood with a side of Cool Hand Luke and the girl with the impossibly small head.

If you want to know more about my dad--and let's face it, he's pretty fucking cool--read these old posts he wrote on my blog way back when. He's a writer, too. Read them and you'll see that it's a miracle I'm here, really, but I wouldn't have my dad any other way.

First maybe this one.
Then this one to balance it out.

Word to your father,
S

p.s. Ooof. I didn't even realize that there is a long comment from my mom on one of my dad's posts. Her voice from nowhere; I wasn't expecting that. I was/am a lucky daughter. Now excuse me while I go cry fat tears of everything.

Day +10 Ch-Ch-Ch-Changes (Nod to David Bowie, Always)

They said I would know when to shave my head. I'm guessing what they meant was when you're in the shower and big clumps of hair come out as you gently shampoo it, making you feel sick to your stomach while you repeat it's ok, it's ok, it's ok even though it feels anything but, that is when you know it's time to shave your head. 

Of course first I called Bryan at work all panicked and sobbing, making him promise to still find me sexy. Not sure if I was on speaker phone or not, but a promise is a promise and his whole office will hold him to it.

Then I did this.

Let me just say that there is nothing more surreal than standing in a bathroom shaving your head with your dad. We tried to have fun, but it was emotional/awkward/just really fucking weird for both of us.

This is my you talking to me? Other impromptu sketches included skinhead, Lilith Fair attendee, I pity the fool, and office guy with weekend warrior corporate faux hawk. Also? I never knew I had a.) such a small head, and b.) such man hands.

Then we took it down a notch and shit got real. 

 Nowhere to hide. 

The good news is my ears don't stick out. The bad news is I look like a man and am really going to have to up my lipstick & lash game.

For the most part, you'll probably see me like this:

 

Although part of me thinks the hat makes me look more chemo-y. Then again, soon even my stubble will fall out and there will be no denying that this is not a fashion choice or even a lifestyle choice but a choice to look like the hairless cat that I have always wanted even though no one will let me get one. See? Deny me my Sphynx and I shall rise looking every bit the Spynxter! Wait, no...

Whatever. Bowie had it right when he said Just gonna have to be a different (wo)man. Because time may change me...but I can't trace time.

xo,

S

Day +9: As I Lay Dying (Already Taken By Faulkner But I Am Sure He Would Understand)

Today was a bad day, a feel sorry for myself day. The kind of day that makes you lie in bed with your arms over your chest pretending to be in a casket wondering what people would be saying all hovered over you, that kind of day.

(Seriously. That's what I've been doing for the last 4 hours.)

This morning when I woke up I almost blacked out. Every time I tried to do something I would get light-headed, dizzy and my vision would go black. I took a shower sitting down. Also, I'm playing this weird game of chicken with my conditioner because I'm pretty much out of it, but I also know my hair is supposed to fall out soon so I refuse to buy more. So this morning on the floor of my shower I just kind of rubbed the conditioner nozzle onto the ends of my hair and felt even sorrier for myself.

When I finally got to the clinic I said boker tov, to Nadir (it means good morning) because even though he's an inappropriate buttface I would still want him to cry over my casket. Oh, look, stupid California girl is learning the language, he said, to which I replied guess that means it's a stupid fucking ugly language. My new burgeoning immune system seems to be allergic to getting fucked with.

The clinic also did blood tests which they always do and said my numbers are falling more, to be expected, and that my platelets are so low I can't brush my teeth anymore. If you know me at all then you know how much joy I get from brushing my teeth. But now I'm only allowed to rub some toothpaste on with a finger and gargle with saltwater, as if I've had a one night stand with a sailor and can't wait to get home.

Top this all off with the fact that the English channel on the tv here seems to play a looped medley of Happy Gilmore, White Men Can't Jump and A League of Their Own, all of which I didn't like in 1992 and 1996. See the draw of lying down with my arms over my chest?

Yeah, I know.

xo,
S

Day +8 The Vertex of This Vortex

All my life I have had a round face, a cute face. A face that made people think it was ok to chant Monchichi while trying to peg me in dodge ball, later it was Gizmo from Gremlins. Freshmen year of high school a senior told me my face was round like a pancake and I have hated him ever since, even though he routinely bought me and my friends peach-flavored Bartles & Jaymes, I hated him. Still do. Fact.

All this to say that my face is no longer round. Or as round, maybe. I have cheekbones. I guess that's the silver lining of chemo: you get cheekbones. Like actual definition, I have an angle. I've always wanted to have my own angle.

Yesterday my dad and I discovered a park a few blocks away with a little workout area. It's the funniest thing, surrounded by a primary colored playground that looks a little worse for wear there sits a circle of Eastern European-looking fitness equipment. Nadir says that he did his part of the job, giving me chemo and the transplant, but now it's up to me to work my muscles. So when I showed him these photos I thought he would be proud. Instead I got in trouble for not wearing gloves.

So today we went back and I wore black latex gloves making me feel dangerous, the coupling of having cheekbones and latex gloves, like a Russian spy or at least a one episode arc character from Dexter.

I realize you can't see the cheekbones beneath the mask, so you will have to take my word for it. I am a dead ringer for Gisele Bündchen under there.

Of course soon I will look more like Sigourney Weaver circa Aliens, as any day now my hair should be falling out. Then the real fun starts, I suppose. That's when people know you're sick and not just paranoid. The funny thing is, even though I will look it I won't really be sick anymore, but healthy. And eventually my cheekbones will disappear, my face once again round, because that's all an angle is anyway, two rays sharing a common endpoint, and that endpoint, in this case, is my future.

xo,
S

Day +7 A Slow Jam

Yesterday would have been my mom's birthday. She died 16 months ago and in some ways it feels like 16 years ago, so much has happened since.

Sometimes people ask if I am mad at her since she insisted more than anyone else that I did not have MS. That's not true, by the way. Nobody would be so rude as to ask me if I am mad at her, but I ask myself that a lot and pretend somebody else brought it up. Because the truth is, I am furious with her. For years I told her I had symptoms. Tingling. A tight band around my torso. My foot stumbled sometimes and she said no, that's not even what foot drop looks like. She was a nurse, a really great, well-respected nurse, plus her husband had MS, so she should know, right? To her credit, we went to the doctor. Doctors. They also said I didn't have MS, so more and more I relied on my mom to allay my fear. I don't have it, right mom? Except late nights I would actually call her mommy, all guttural and please make it go away, curled up on the couch while everyone else slept. Of course not, she would say, silly, she would say. You have to stop this. Sometimes she would get exasperated with me and say my name Susannah! in the way that only she said it, a hint of southern accent and just her.

My mom was always right. Part actually always right, extremely intelligent and perceptive, part just had to be right, no matter what. Once I told her that she just didn't want me to have MS because I was her daughter and she loved me, so of course she didn't think I did, and she got so mad at me. If I thought for one second that you had MS I would have them do every test there was on you! The same women who called the president of my college to get me the classes that I wanted, so I believed her.

I believed her.

8 months after she died I was finally diagnosed, and I can't help but wonder what her reaction would have been. Would she have admitted being wrong? Would she have apologized? Would she have said my name any differently? Of course, of course and no, although all three would have been a first. Because you didn't know my mom. In some ways, I don't know my mom. She was so busy being magical that at times she did not seem real. She was the best, most beautiful, smartest, funniest, wackiest, and yet she would go silent, almost reverent, whenever she traced her fingers down the inside of my arm. What would she have done when I was diagnosed? Would she be here with me in Tel Aviv? Would she help me pick apart the counts of lymphocytes, granulocytes and neutrophils? Or would she just stroke the inside of my arm?

I will never know and I am mad at her for that. For a lot. Maybe it's not fair, but come on, none of this is fair. It's just a fucked up story in a world of fucked up stories, but it's mine and I will probably spend the rest of my life trying to make sense of it. Or trying to ignore it. Either way.

I know I've shown this photo before, but I only have so many.

xo,
S

Day +6 A New Low

Today started out just like every other day here which means I went to the clinic with a cup of my own pee. (This is one of those sentences you read back in disbelief that your life is such that you said it.)

So I brought my pee but they were not happy with my pee. (There's another one of those sentences. I'm actually going to stop pointing out these sentences because, well, this whole thing.) They told me to go back to my room and drink more water and come back with more pee. If that pee did not make them happy, they were going to hook me up to another saline drip which is akin to that Chinese water torture thing you were always afraid of as a kid, only with saline and urine.

So I went to my room and watched Real Housewives of Beverly Hills on my computer, chugging water every time one of them tried to make a facial expression, and by the appointed time I had drank 2 liters of water. Done. Gold star at the clinic, they were very happy, said my pee had the clarity of a fine pinot grigio spritzer. Not really, but I pretended they did.

Then Nadir told me I had to exercise my muscles, that they were turning to mush. He probably thinks I came here all yolked up or something, but fine, I was on a high from narrowly missing the saline drip, so my dad and I went on a walk. Nadir said it was safe to go down the street a bit in the open air.

Now you must remember that this was the first time I had left my room in days. A week? I have to wear a face mask, my hair hasn't been really brushed in days. For some reason I packed 5 pairs of skinny jeans for this trip, and skinny jeans is the last thing you want to wear when you're all sausagey from saline, so my dad had bought me some horribly ugly maroon sweatpants from the mall downstairs. So I'm wearing sweatpants, a face mask, an oatmeal colored sweater that looked convalescent cozy at The Gap when I saw it but now just looks crazy lady pilled, and an old Rolling Stones tee shirt that would maybe be cool if it wasn't actually from Old Navy, god knows why they licensed to them anyway. We walked down to a park that may or may not have a Henry Moore sculpture when suddenly I had to pee. Like two liters of pee. Like NOW pee. 

Look. I'm weak. I have no immune system. My lymphocytes are at 0. I couldn't exactly high tail it back to the clinic so instead I tried bargaining with my bladder. Please don't make me go pee here, please kegel kegel please. When that didn't work I just grabbed my crotch and shuffled. My dad was walking a few steps in front of me and the whole thing was just so comical I had to yell at him to stop pretending he wasn't with me. And then there were the looks. Me with my hand clenched in that timeless pee pee dance. One older woman in particular looked at me with such disgust that I just stink-eyed her right back, grabbed my vagina tighter and said very loudly, I will never see you again.

Dear god, I hope that's true.

The good news is I made it. Not with any sort of pride intact, but pee intact so whatevs. I'm guessing this is not the time for pride. Anyway, no pics of pee or ugly outfits, just this image that really spoke to me today.

xo,
S

Day +5 Ch-Check It Out

So I am officially neutropenic, which made me feel all sorts of proud until I realized that just means my neutrophils are so low that I don't have an immune system. If you have no clue what that sentence means, neither do I. I only know that it will probably go even lower than that, a.k.a. "the drop," or the nadir, which means the lowest point, and yes, everyone makes jokes about how the doctor's name is actually Nadir. It's kinda' like a Dickens novel, how characters' names are indicative of their lot in life.* For the record, my name in Hebrew means lily. And for some reason Nadir in Hebrew means rare, i.e. this lily is about to hit the rare, lowest point. 

All this hullabaloo about meaning because I really don't want to talk about The Rash. Or maybe all caps. Because you wouldn't believe THE RASH on my torso, a nasty, red horrible looking thing that actually says in its tiny crusty voice, don't look at me! The nurses here say it's just one of the side effects of chemo, and that I seem to be one of the rare (Nadir!) ones who gets all of the side effects. Gold star for me, extra credit, smiley face. They also said that they "think" that if someone gets more side effects from chemo that means the chemo will be more effective as it shows your body doesn't have any natural immunity to the drugs, but they might have just said that to make me feel better. (It did.) And because they didn't want to look at THE RASH anymore. (They didn't.)

Obviously this will be a post sans pics because jesusmaryandjoseph you would never be able to un-see it if you saw it, so in lieu of THE RASH I present to you this amazing video of Buddhist monks break dancing to The Beastie Boys.



Let's turn this motherfucking party out,
S

*I know there is a word for this--when a character's name indicates his lot in life, but I can't remember what it is. Help. Anyone?