Friday, April 24, 2015

9


Dear Zoey,

9. 9?? No, seriously, 9?!?!!!!!! 

For 9 years now you have been filling the air with exclamation points, question marks, emoticons before they existed, things unsaid but always felt. (For 9 years and 9 months, actually, but ew, I know.) So 9 years.

9 years ago your dad and I left the house at 3am while the neighborhood slept silently, the stillness of the fog thick with everything that was about to happen. I remember driving across the city, how at a red light we stopped next to a truck blasting dance music, thumping the windows. How I turned to look at the young guy driving just as he turned to look at us. I couldn't help but think how different his night was than ours, how he might wake up the next morning and think about what had happened the night before, I don't know. Maybe his night was nothing. By the time we reached the hospital I was 8 cm dilated.

!!!!!!!

I had dinner with a friend of mine last night who said that turning 9 is momentous as it is halfway to a child leaving the house. I wanted to punch her for a second, because really? This is how it happens? So quickly at a dinner table over a beet salad and then you're gone, grown up. Do you want any pepper on that? No please.
God but you are beautiful. And more. I want to wrap myself around you and hold you always, hear you rattle on and on about Minecraft, read me blurbs from your graphic novels, secretly listen as you sing in your room. The truth is, I have been in a constant state of disbelief since you were born. I have a baby! I am in love! Her breath smells like warm bread! She can walk! Kick a ball! Spell exhale! How did I get so lucky? For 9 years now I have felt your own reverb as it thumped against the windows, watched as you moved through time and place, amazed at who you are and are becoming, the persistence of sound after a sound is produced. The reflections continue.

There is not a day that goes by that I don't think about what happened that night, that morning, to be exact. You were born at 10:52 am, the doctors pulling you from me with a tug. 9 years later and I still feel that tug, that pull, that something unsaid but always felt. 

It sounds like this.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With all the emoticons in the world.
I love you,
Mommy

8
7
6
5 (missing)
4
3
2
1 (pre-blog)

Thursday, April 23, 2015

My Goal Is To Reach Intentional

I'd like to think I'm maybe 1/2" from that goal? From looking like I cut my hair into a super short pixie on purpose and am not actually post-chemo. So two months? Two months and I will look like I meant it. 
Mean it. 
Me.
Although I will say that yesterday I received my first compliment from someone who doesn't need to make me feel better. I was at West Elm when a stranger told me she loves my haircut. Thanks! I said, maybe a little too effusively. It's not actually a haircut. I had chemo. Well, it looks great, she said, and then followed me around the store telling me about how she used to live in Hawaii, some story about a man, a rainstorm; it had nothing to do with hair or west or elm, not even anything to do with trays, which is what I was buying. So perhaps she was not all there, but even halfway there, a sliver of there, a hint, a shade of thereness and I will take it. Took it. Thanked her a thousand times because I am almost there, too. A half an inch away and I will no longer be a walking reminder of how terrible things happen, but a story of how terrible things happen, and then something else happens after that. 

And then. Before she left I gave the woman a hug.

xo,
S

Monday, April 20, 2015

Back

You know how I said I would be Instagramming my trip to Yosemite? Well I kind of forgot that living deliberately like Thoreau means that there is no wifi in the woods, i.e. as soon as we crested the hill out of nowhere and my phone came back to life, I felt rather left out that I had missed the news of Kim Richards' arrest for drunk and disorderly. 

But camping! To mix literary references, it was the best of times, it was the worst of times. It was apparently time to play a giant game of chess amongst the trees. 
If you are planning a trip to Yosemite with your kids, I cannot recommend The Evergreen Lodge enough. But only if you have kids because the place is teeming with them. Happy, dirty, loud laughing kids playing in the teepees, the swimming pool, on the zip line, playing foosball, ping pong...every night there are s'mores around a campfire. But I am not being paid to endorse them, so let's move on.

The funny thing was that there were about 5 other families from our town there, all with kids. Their kids went to the other elementary school, so I didn't know these parents and my kids didn't know the kids, but it was an instant gang of kids playing together. Which was awesome.
I'm beating around the bush here. 
The trip was hard for me. Physically, and because of that, emotionally.
This is the only photo I have of all of us, so Ozzy's gonna have to take one for the team despite that awful face he's making.
See, I am not a camper per se. Or a hiker. But I want the ability to hike if I feel like it, and yeah, I felt like it in Yosemite but I couldn't really do it. Not for long anyway. I am realizing that the damage that MS did to my body is done. I hopefully-cross-my-fingers-please-please-please stopped the progression of the disease, but the existing damage is done, and that means I can't hike more than a few miles without my back completely seizing up.
On the last day, we decided to hike to this waterfall and swimming hole. I had a feeling it was too much, but I didn't want to disappoint the kids and Bryan who really wanted to go. So we went.
It was about 2 miles both ways, up and over scrambling rocks at some points. Halfway through, my back just gave out. I had to drop to my knees every hundred yards and rest. I was sweaty, panicky, pissed off, scared. When we finally got there, we saw that the other families from our town were there, too. Zoey and Ozzy were stoked, but I felt awful.
Now let me preface this by saying: these other moms were amazingly nice. But I did not feel amazingly nice. I felt amazingly dirty, sweaty--disabled, other. I was wearing jeans, a flannel and a beanie, but when we got to the swimming hole it was super hot. The other moms were wearing bikinis. One of them had done the whole hike with her baby strapped onto her chest, and I had just barely made it myself, dragging my feet and tripping. I was pissed. At Bryan for making me do the hike. At these other moms for their long ponytails. At myself for looking like a cross between Mr. Clean and the Brawny paper towel guy with my stupid flannel that doesn't look cute without hair. It just looks butch. I felt ugly, inside and out.
Me laying down on the hike. Because fuck this shit.
But this isn't just about vanity. It's about how I feel, and how I have to accept myself for who I am now. A woman with a military buzz who has limitations.

But before that realization, on the hike back, after we had let the other families hike in front without us under the guise that Ozzy takes a long time, my walking got even worse. And I cried. Snotty, sweaty, horrible tears of I can't do this. I could see the look on Zoey's face, how she was trying to look normal when everything was not, and that killed me. I hate myself for making my family worry. For not being able to hike to a damn waterfall without falling apart. 

But I did it. I fell apart and picked myself back up, probably about 30 times. I made it back to the car.

The kids fell asleep as soon as we got in the car. I just curled up and waited for my cell phone to get service again while Bryan drove the 4 hours home.

About an hour from home the kids woke up famished, so we stopped in the middle of nowhere in a strip mall to eat at a restaurant called BJ's. It was next door to a sporting goods store called Dick's. This brought great levity back to me and Bryan who had barely spoken for most of the car ride, especially when the kids kept saying how much they love BJ's. Stop saying that, guys! Why mom? What's so funny?

Life is funny, that's what, I wanted to say. Life is fucked up and funny and sometimes all it takes is a BJ in the middle of nowhere to sit your family down around a table to talk about how they had the best vacation ever. So even though I didn't, I did, if that makes any sense.
Atta' boy.
If any of it makes any sense at all.
xo,
S

Monday, April 13, 2015

To Drive Life Into A Corner: Spring Break

Despite the fact that I have always been more camp than camping, we are going to Yosemite for Spring Break. And by "camping," I mean we will be staying in a lodge because dirt and air-borne pathogens, plus dirt and dirt. But off we go! Yay camping!
Not sure if I am including this photo because I love my cute new dress, because Grumpy Cat is my spirit animal, or just that I am a total pussy when it comes to camping...probably all of the above. Anyway, I am going to confess something really cringe-y embarrassing right now, k?

I started following Kendall Jenner and Gigi Hadid on Instagram.

Seriously. Don't look at me! I am a 42 year old mom who subscribes to photos of 20 year old models because I, too, want to be wearing body jewelry at Coachella. Taut tanned skin! Long, beachy hair! My hair is almost a quarter of an inch now, by the way. Quarter of a goddamned inch.

Of course I am not going to Coachella because dirt + crowds + 42 ÷ by the square root of aw hell no. I am going camping. To the woods. To live deliberately, just like Thoreau who went to the woods because he wished to front only the essentials of life, and not, when he came to die, to discover that he had not lived. Plus there's that whole part about sucking out the marrow of life, which I've always read in the voice of Sir Anthony Hopkins à la Silence of the Lambs. I do love me some Thoreau. Also apparently photos of lithe young models more beautiful than I ever was 20 years ago, but that's only because Thoreau is not on Instagram.

But I am. So this week expect me to Instagram some pics of myself not wearing body jewelry but a decidedly sexless Patagonia fleece. And a smile.

Happy Spring Break to you & yours.
xo,
S

Wednesday, April 8, 2015

5 Things That Have Nothing To Do With Each Other (And 1 Thing That Does)

1.
The first few weeks after I had Ozzy I binge watched Mob Wives while chained to my couch, breastfeeding. After the postpartum hormones wore off, I discovered Mad Men. I thought about that on Sunday as we watched the last of the Mad Men episodes. How right after my mom died we watched Nurse Jackie, something in there about nursing a connection, or pills...Breaking Bad saw us through moving from one house to the other, we watched Weeds even when we didn't want to anymore, how in the weeks leading up to me leaving for Israel we watched Friday Night Lights like it was our job, clear eyes, full hearts, can't lose, me so scared and mesmerized by Tim Riggins' hair. Binge watching these shows like a time stamp, how.

2. 
Yesterday, against my better judgment, I watched 3 hours of Keeping Up With The Kardashians, mostly because I am kurious about Bruce. But nothing was mentioned about him, so then I Googled Kim Kardashian's sex tape, 8 years after the fact, and wow. I must be getting old because it made me so very sad.

3.
I judge the shit out of anyone who puts the extra 'e' in judgment. Then I feel bad for being judgey, because judgey is not even a real word and seems like it needs that 'e.'

4. 
There is a checker at the grocery store near my house who always comments on my food choices. I don't like his face. I would get uncomfortable every time I went to the store, anticipating what he might say about blueberries and bread, so I decided to try to imagine him as a little boy and me being his mom. I thought maybe it was cute how he comments on everything, and now I love him a little bit, if that makes sense.

5.
I have been living out my childhood fantasy of playing library by volunteering in Zoey's school library once a week. Stamping books, sshhhing people, admiring selections, putting people to task for forgetting to turn books in...it is everything I ever thought it would be. And more! The week after next I am volunteering at the Scholastic Book Fair. I am totally buying that kitten poster I always wanted as a kid.

6. 
Last week I bought Zoey and Ozzy new betta fish which they promptly named Plumeria and Firetuck. I will let you guess who named who. Though don't get too attached, as this morning Plumeria was found dead. They were in separate bowls, so Firetruck had nothing to do with Plumeria's early demise.
xo,
S

Wednesday, April 1, 2015

The Bad Scheisse Club

This morning I woke up thinking about Teresa Guidice. I worry about her, you know, only 3 months into her 15 month sentence. Thank the sweet baby Jesus and strangely enough, I see that she is on this week's cover of Us Weekly, so hopefully I will feel better after reading that. We will all feel better.
Teresa and I are in a club together now. And just the other day I had lunch with a friend I hadn't seen in maybe 6 years; she is in the club, too. It's a sucky club. A fucked up club, The Club of People Who Have Gone Through Some Bad Shit (Bad Shit Club for short). Our club cheer is a keening of sorts that can either sound like crying or laughing, depending on the day.

There is something calming, though, about talking to a fellow club member. You don't have to dodge well-intentioned looks of pity or stupid questions. Instead you look each other in the eye, shrug your shoulders and say things directly. There is the shared understanding that life is a total asshole sometimes, something that you may think you know but you can never fully know until Bad Shit happens (and even then I have a sense that I still don't really know, please god, spit over my shoulder twice).

I don't mean to sound elitest about this. I envy those not in the club. And for the most part I don't mind stupid questions or pity, so long as they are well-intentioned. Although the other day I was at the mall and there was a lady who would not stop staring at me. I very much wanted to walk over to her calmly, place one hand on her arm and say quietly, tag, you're it. I'm not going to tell you what, I'm not going to tell you when. But you're next... 

But I didn't, of course, because that would have been mean/evil and probably against club rules.

Instead I went home and gardened. And by "garden" I mean I planted succulents in a container on my deck high up where no animals could have been in the soil because air-borne pathogens et al. Even then I wore gloves and a mask because I am not supposed to garden for a year. This is what gardening looks like now, although not pictured: the guilt and fear I have for gardening at all when I am not supposed to, I do love me some rules...
Dead ringer for Susan Powter, no?
I am also not supposed to swim for a year, not in pools or the ocean, or play in the sand. It's going to be one long, hot dry summer, let me tell you. This is what going to the beach looks like now, taken this past weekend, though truth be told this is probably what going to the beach should have always looked like, i.e. the sun damage on my chest, oy.
All this to say that I do still worry about Teresa. She's still in it, the clink, yeah, but more than that, in it. And I am out. Ish. For the most part free, though with restrictions to gardening, swimming, no mani/pedis for a year, no sushi, no raw anything, no probiotics, no, no, no. Despite all those Amy Winehouse nos, more and more my club cheer is one of laughter. Dark, maniacal, sometimes, but still. Laughter.

Keep going, Tre. You'll get there.
Off to buy my Us Weekly.

xo,
S

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