Monday, March 23, 2015

The In Between Place

I realize now that I am in The In Between Place. Title Case cap like that because it makes it more romantic, a Destination. Which it is, even if it does seem neither here nor there, wishy washy which at least includes a wish for. I am no longer sick but not totally well yet, and here is where it starts to unravel, reminding me of Britney Spears' I'm Not a Girl, Not Yet A Woman, which for some reason always made me think of the word taint. How quickly it all goes from point A to point perineum.
Not sure why this raccoon other than he speaks to me today. You, too, right?

This morning I just so happened to check my bank account and found a bunch of unauthorized transactions totaling $1,142.95 all made to an online Chinese gaming website called ChangYou. I thought it was some sort of sign that I need to make a personal life change of some sort until I looked closer and realized it's not Change You but ChangYou. I guess the only sign here is that I need to cancel that card. Or maybe it's a sign that it's all an unauthorized game that I didn't realize I was playing. Or there is no sign. Yeah. Probably that.

Probably being the key word. Possibly. Interchangeable with I dunno.' Because if I had to write a travel brochure for The In Between Place it would probably have some bullet points about how some mornings are perfect for going back to sleep while other mornings make you want to spring out of bed and dance your ass off to The Specials. Most definitely there would need to be this photo of a sassy Peter Allen next to that bullet point, even though to my knowledge Peter Allen had nada to do with The Specials. 
Because that's how I feel sometimes in The In Between Place. Like maracas and spangly lycra, all hips, behind me everything a blur. While other days I feel more like the raccoon, slow, timid. In general I am strong again, physically almost the same as I was pre-treatment, but I leave that almost there because. I get tired easily. Especially in the sun. A day in the hot sun makes me feel nauseated, exhausted. I guess chemo makes you very susceptible to sun damage, and ugh. Which makes me scared. And oof. I should also mention in the travel brochure for The In Between Place that sometimes communication is best done through sounds. Bah. Eh. Mm. K?

I get the feeling I am not doing a faboo job of selling The In Between Place, not that it really needs to be sold. If you're there, you're there and here we are. But that's the beauty of The In Between Place...here you have to be kind to yourself. Feel like going back to bed? Ok then, off you go. Don't beat yourself up, just nestle in. Want to turn up the volume and dance around to A Message To You, Rudy? Awesome! Go for Concrete Jungle while you're at it. It's all good here in The In Between Place. There is no expectation to change yourself or chang yourself even. In fact, I have no way of ending this post and that's cool, too. That should probably be the tagline for this brochure...The In Between Place: That's Cool, Too™.

Maybe you're here for your own reasons. If so, high five, hug, and/or we can ignore each other and go back to sleep. Or you're not really here but just stopping by to say hi, in which case, refer to the tagline.

xo,
S

Thursday, March 12, 2015

The 2015 (Hair) Farmer's Almanac

I haven't posted much lately simply because I have a new and very important job of Growing My Hair Out, second only to my first job title, CEO of the Chemo Recovery Unit, wedged somewhere in between my responsibilities as Chief Operator of Closet Organization, Taker of Too Many Cat Photos, and VP of Swallowing Handfuls of Vitamins So That My Pee Is Impressively Neon, L.L.C. 

IRL (In Real Life, for those who actually have a real enough life not to recognize the acronym), I am a writer at a cosmetics company. Now, while I love nothing more than a long morning of unloading the dishwasher and then climbing back in bed to read because unloading the dishwasher is exhausting, I do miss IRL. My job...the office chatter, the silly stories, the "circling back," the "putting a pin" in things, but also the writing about beauty products. So I thought I'd merge IRL with MLRN (My Life Right Now) and write about what I'm using in my current position of Managing Foreman Hair Farmer.*

*Bonus points that I don't have to run anything by legal and regulatory because bold faced fine print: THIS IS JUST MY OPINION. I don't actually know what I'm talking about unless you count too much time spent reading crap on the internet about hair growth products, in which case I should totally get a raise.

First up: the obvious heavy hitter Nioxin. Perhaps not so obvious: I am wearing my glasses because they make me look like I know what I'm talking about. The most obvious of all: I don't really know what I'm talking about, except that everything I read online said to use Nioxin over Rogaine after chemo. So I promptly bought Nioxin and only feel slightly silly lathering up my bald head with shampoo and conditioner. I refuse to repeat.
See also: all wigs used in this post are from the kids' dress up box, i.e. I would never rock one of these IRL or even MLRN, although the above long black bob may be a look I pass through in a few years time. This turquoise Garth, not so much...
True story: I once doubled the marshmallow amount while making Rice Krispie Treats because I figured if 4 cups of marshmallows was yummy then 8 cups would be heavenly. Of course it was an inedible brick of corn starch and I ended up throwing the whole thing in the trash because I couldn't pry it out of the pan. It is this same faulty reasoning that made me think that if one Nioxin product is effective, then 5 is...?
Yes, I bought Nioxin shampoo, conditioner and three different treatments. No clue what one treatment does over the other. How many ways can you grow hair? It was only after I bought them, opened and used them did I hear that there is a rebound effect with Nioxin, meaning that it works, sure, but once you stop using it you shed hair at a faster rate. Also? I don't know why my hand looks so small in the above photo, or my head so large. I look sad. Perhaps a side effect of too much Nioxin and/or a Monster High wig.

I am currently undecided if I should stop using the Nioxin (thoughts?), but what I do feel good about is Biotin.
The au naturale route, Biotin is a conenzyme necessary for cell growth, the production of fatty acids and assists in maintaining a steady blood sugar level. It strengthens hair, nails, and may help treat nerve damage. I take 10,000mcg/day which is on the high end. Double down on the marshmallows and all that...

Which brings me to Goop, as all beauty roads lead to Gwyneth. My friend told me that she read an article in which Gwyneth swears by Viviscal, so duh. I did a little research and bought some, too. Viviscal is a supplement that contains vitamin C, Niacin, Biotin (more!), Iron and Zinc, plus millet seed and horsetail extract, which just sounds hairy, so. Something about nourishing from the inside out makes me feel better about being so shallow as to care about not having hair.
Just noticed I am flashing some sort of gang sign in the above photo. 'V' for Viviscal or vagina, you choose. Or we can just call it a Victory.

Speaking of shallow--next up we have lashes and brows. Also, I ran out of wigs.
Full disclosure: I ordered Latisse while still in Israel because nothing makes you feel sicker than not having eyelashes or eyebrows. Latisse comes with individual applicators, one for each eye so you don't spread infection. I use it on my top lash first, then sweep whatever is left over on the applicator onto my eyebrows. So far, I haven't seen a big difference on my lashes. They are still pretty sparse. But holy chia pet, people! My eyebrows are like 7th grade Susannah, before the 90's came along and I tried to replicate Drew Barrymore's eyebrows from her Guess campaign. Suffice it to say, my eyebrows are currently the hairiest part of my body, which is a surprisingly sexy look.

So that's my current regimen. Along with taking magnesium, turmeric, CoQ, Alpha-Lipoic Acid, vitamin B12 and vitamin D. I am a veritable vitamin-taking, hair-growing machine. 

As such, I tried taking an up close photo of my hair to show you how it is growing, but up close it looks like a manscaped scrotum that has been neglected. So instead you get this moody shot. I swear there is hair there. Hopefully more to come, because this Hair Farmer's Almanac sees a season of growth in the next month or two, along with strong nails, clear skin and pee so neon bright it glows in the dark. Sometimes side effects are actually quite cool.

xo,
S

Tuesday, March 3, 2015

What Do YOU Do All Day? (Day +49, For Old Times' Sake)

I am the fat kid making fun of himself before anyone else does. Which I am pretty sure is not PC to say anymore, reference to fun or fat or kid (not to mention that for some sexist reason I feel even wronger writing "fat kid making fun of herself"), but here I am in the hair essentials aisle at Target having found myself in a fugue state staring at shampoo. What? Oh, yeah.
Not pictured: Target Team Member stocking the shelves who seemed unsure if he should ask if I needed any help. Ma'am? Do you need me to take that picture of you standing in front of the hair essentials aisle looking lost? Nah, I'm good, thanks.

(I realize nobody else cares that I am bald but me, but still I will tell you this: sometimes while sleeping I move my head and feel what I think is a hair tie that I forgot to take out, something bunching uncomfortably, pulling. Like a phantom limb, I have phantom hair, and yes, it gets stuck in my lipgloss, too.)

The good news is that my family now has a jumbo vat of Krazy Glue lest we find ourselves needing to put things back together again, a boatload of AA batteries (buttload seems so very wrong in that context, make that any context), plus a jumbo pack of light bulbs featuring the wrong size base. What do you do all day? people ask me, mainly Bryan, who wants to know what I do when they leave the house for school and work. So I point to the cabinet where we now have enough toilet paper to see us through a month's worth of bad curry, back stock of Windex, Tilex and something that makes our laundry smell the most laundriest, then I show him how I organized my sweaters. When that does not seem to impress him enough I send him this video of Ike and Cinque loving each other to the sweet sounds of brown chicken brown cow, because nothing says raison d'être like making a video of feline foreplay. And then watching it too many times to be socially acceptable.
Do you feel the slightest bit duped right now? As if making a video of your cats getting it on isn't bad enough, watching a video of someone else's cats getting it on is pretty much the lowest of the low. Sorry.

But the worst was when I was at Target yesterday and realized I had left my Fitbit at home. Because WTF is the purpose of walking if I don't get any credit for it? I told Bryan about this travesty later and he asked me what kind of credit I got, like credit points toward something? I wanted to bite him on the neck like Ike bites Cinque, shake him around a bit, because I'm talking about credit for personal glory, duh. I ordered a Fitbit when I got back from Tel Aviv to monitor my activity, egging myself on to walk more, do more, be more. So far I am up to 10,000 steps per day which is not a lot a lot, but is a lot if you just had chemo. Which I did. Oh also, I'm bald, in case you forgot.

So that's what I do all day. Specifically, here is what I will do today:
Water plants
Camps!!!
Buy light bulb (again)

Which might make me feel fruitless, the banality of it all, though, quite frankly, I don't believe one can put a price on infusing my family's laundry with the lasting boost of the fresh, sun-kissed scent of early spring. But if I did? Feel ineffective? I could remind myself of this: I used to work with this woman who has since moved to another state. I am still Facebook friends with her, and she messaged me the other day to tell me that she now works with another woman who has MS. She told her coworker about my blog and after reading it and researching the treatment, this woman is now scheduled to go to Russia for her own autologous hematopoietic stem cell transplant. The feeling I have is indescribable, though I suppose it would be correct to say it also gives me the lasting boost of the fresh, sun-kissed scent of early spring. Not to be flippant, but yeah. Hearing this makes me feel alive, as if what I am doing makes a difference not only to me and my family, but to someone else. Super bonus credit points that Fitbit does not yet capture or pay out but it's there, baby steps but steps nonetheless, one step toward ending MS. 

That's what I do all day.
xo,
S

p.s. If you or anyone you know has any questions for me about HSCT, feel free to email me.

Wednesday, February 25, 2015

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

Monday, February 23, 2015

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

Tuesday, February 17, 2015

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

Friday, February 13, 2015

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?

Tuesday, February 10, 2015

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

Friday, February 6, 2015

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

Wednesday, February 4, 2015

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

Tuesday, February 3, 2015

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

Monday, February 2, 2015

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

Sunday, February 1, 2015

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

Saturday, January 31, 2015

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

Friday, January 30, 2015

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