Day +7 A Slow Jam

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

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

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

I believed her.

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

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

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

xo,
S

Day +6 A New Low

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

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

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

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

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

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

Dear god, I hope that's true.

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

xo,
S

Day +5 Ch-Check It Out

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

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

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



Let's turn this motherfucking party out,
S

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

Take It To The Bridge

So I was thinking the other day which was probably today, I don't know, they are all running together, about when I go back to work and how people will know I've spent the better part of the last 6 months peeing in cups and discussing the relative opacity. I mean, unless the 2016 Pantone Color of the Year is Blood In Urine, it might be a little strange. Like maybe we're in a meeting having a heated discussion about how to market our newest product, and I'm insisting we would never say that, it's not in our brand voice, and in the back of your head you remember that one time I had to wear a diaper during chemo and you smirk. You smirk! I mean, I would totally smirk. 

Especially since I have calculated the amount of hair growth I hope to have by the time I'm back at work and divided that by the square root of the famous chemo curl and am pretty sure I will look a little like Justin Timberlake circa 1995. Here is my closest approximation:

There is no amount of headband or scarf that can make that right, right? How am I going to get through this? How are we going to get through this, you with your smirk and your memories?

Because this. This is also happening.

I am a goddamn warrior, and you don't know if I am smiling beneath that mask or crying, a modern day Mona Lisa with a drip line. And while I don't know at times either, I am okay with the answer being all of the above and more. I am smirking, laughing, crying, lonely and hopeful, and I am going to bring sexy back to the chemo curl when it happens, just you wait.

xo,
S

Day +2: Dimples of Tokhes

There is not a lot to take photos of here in the white walled palace of medicine bottles and Hebrew, so I present you this: the illustration on the back of the box of gauze for the picc line. I can't help but think it looks a lot like something you might see in a store in the Castro. Hot.

I'm telling you, when you're surrounded by so much unknown you look for the familiar in the unlikeliest of places.

Last night I felt as if I had fire ants biting me all over, my chest, neck, scalp, belly, boobs, and when I woke up, yep, I was red hot and welty. Dr. Nadir took a look and said it was contact dermatitis, probably from the laundry detergent they use here. The chemo has weakened my immune system. So my dad had to hunt down the type of detergent I use at home and then re-do all my laundry himself while I had a steroid drip. I hope it goes away soon because I feel so frickin' itchy.

Dr. Nadir here--everyone just calls him Nadir. Let's just say you would never find a doctor like him in the States. He's rude. He says he won't answer my questions. He tells you to shut the fuck up. But he also says all of this with that loveable manner of an inappropriate relative who you know really loves you. Because one second he calls you stupid and the next minute he holds your hand and tells you that it will all be ok.

I was getting offended because I had heard that he gives all of his patients nicknames (albeit derogatory), when finally today he said that I would be CA. I said, CA, as in California? And he said no, CA as in Cute Ass. He said that when he gave me my Bone Marrow Aspiration he saw that I have a cute tokhes, so I was happy for CA until he later added an S to it. SCA. Now I am Stupid Cute Ass. Whatever. My dad is Hoover. Because his name is Edgar. And because he has not seen my dad's ass.

Speaking of my CA, you know those little dimples that some people have above their butt? Like small of the back area? I heard only 4% of the population have them; they're called Dimples of Venus which is nice. My mom had them. I have them. Though I made the mistake today of looking in the mirror and now my Dimples of Venus each have a teeny scar from the Bone Marrow Aspiration. I guess that's where they took it from. A dimple in my dimple of the goddess of Beauty from someone covered in red hot welts and still puffy from saline.

Now you will have to excuse me as the only English channel that is not CNN is showing Terms of Endearment and I while I haven't seen that movie in a long time I am pretty sure it ends on a feel good note.

xo,
S

Day +1 It's All Up From Here Except When It's Supposed To Go Down Again

First of all, sorry for the radio silence. But god damn this is harder than I thought it would be.

View from the clinic room, my home for the past 3 days.

The Bone Marrow Aspiration was nothing. But then the chemo. I have heard people say the chemo is not that bad. I have also heard people say that each patient is different. Well fuck me if I wasn't the one for whom the chemo was the absolute worst.

They pump you with bags of saline to protect your organs, so I looked like the ugliest day of edema in the 17th month of pregnancy. It was like being that soggy piece of bread at the bottom of your sink but with a killer hangover plus the flu and food poisoning. I puked. I had diarrhea. Whatever. My pride went out the window when they inserted the catheter, not to mention when they put a diaper on me. Truth? You want truth? There it is.

Every piece of my body hurt. Because I had no stem cells (or little) I had no strength. Lifting my head to throw up was a feat. Opening my eyes hurt. And yet I couldn't sleep because I was in so much pain and was so nauseated. So I was just there. In it. Seconds seemed like hours and there was nothing I could do. There was no escape. Hyperbole? Not even.

But before you go kill yourself on my behalf please know that I have turned a corner. Yesterday they gave me my stem cells back, also called Day 0. Otherwise known as my birthday. And while that made me feel a smidgen stronger and less achy, I was still throwing up.

And now we are here at Day +1. I am back in my hotel room, now in total isolation. I have drank a few glasses of water and eaten one half of a banana, so there's progress. I can open my eyes without moaning; I can walk; I can watch Real Housewives; I can pee. They took the catheter out.

The same people who say that each patient is different also say that I will feel better for a day or two, and then dip down again as my immune system plummets. So there we have it.

If I have not responded to your texts, emails, FB messages or anything else, please know that they are keeping me afloat. Especially those people who send me pics of my kids. :)

Onward and upward! (And then downward and upward again).
xo,
S

A Short Report From Day -2

I'm a bit of a ticking time bomb right now, hooked up to chemo drugs and not knowing when I might start puking. I'm also hooked up to lots of wires, a catheter and an oxygen monitor on my pointer finger, so I can only type with my middle finger. But I'm not flipping anyone off at all. On the contrary, I am happy.

Wheeeee, here we go. They put me under for the bone marrow aspiration and I have to wonder why we don't get put under for more unpleasant things. It's awesome. I was telling Nadir all the words in Hebrew that I now know (a short list) and then they were telling me it was over. Hussein made me a sandwich of cottage cheese, tomatoes and cucumber (delicious) and now I'm watching these drugs drip into me like bullets to kill the MS. (I love you chemo drugs.)

Other than that I am dizzy, sleepy, thirsty. I miss home but I am in this.
Xo,
S

P.s. No photo cause I can't figure out how to load it from my ipad. And because I look like shit.

The Pathetic Post (Possibly 1 in a Series, We'll See)

There is only so much to be said about life inside of a white hotel room. 

It's funny how I can be so painfully bored when there is so much huge going on. But this room. White walls and white bedding. I eat hard boiled eggs and toast because I am not supposed to have take out food or raw fruit or veggies. Eggs and toast and bottles of pills in Hebrew, not quite sure what they are. I am supposed to stay away from people so I do. I stay in my room and read, sleep, watch bad tv. My dad comes over and we listen to Serial and put together the jigsaw puzzle, all the while my stomach is churning from the Campath possibly, or more likely from the fact that tomorrow I have the Bone Marrow Aspiration, then 40mg of Fludarabin and 60mg of Cytoxan.

I tried to do yoga today but the stupid grippy yoga socks I brought in lieu of a mat don't work and my feet kept slipping out from under me. 

I feel sorry for myself. I am not proud, but I had quite the crying jag yesterday morning (or was it today?), thinking why me, I just want my life back, this is all so wrong, me in a hotel room in Israel about to kill my immune system when my babies are on the other side of the world. Just typing those words gives me a lump in my throat so I sit up straighter, blink it back. This is temporary. Soon I will be home wishing for quiet, wishing for white.

Oh for fucks sake, I am such a whiner! I hate whiners. I hate this. I hate that I have nothing else to report from my white room other than hard boiled eggs and a puzzle.

Here. Here is my bed covered, of course, by the quilt that Zoey's Girl Scout Troop made me. Each square is designed by a girl with a funny drawing or a message on it. And next to that is a shirt that Zoey gave me of hers which I hold onto while I sleep.

And here. The other side of the room (with said puzzle).

And that's...that. I am sorry for sounding so sorry. It's hard when everyone tells you how brave you are, what a warrior, when all I really want is for all of this to go away. But the closest I can come to having it go away is to go through it, so tomorrow morning they will stick a very large needle into my hip bone and collect stem cells, and then I will have high dose chemo.

I honestly don't know how to end this post without sounding like a hopelessly pathetic person that you roll your eyes at, so please know that I just need to go through this, all of it: the whining, the fear, the chemo, the nausea, the feeling sorry for myself, the exhaustion...only to come out the other side.

xo,
S

Room. Alt title: Breathe. Altier title: Already Bored.

I would take more photos to show everyone what Tel Aviv looks like, my room, the other side of my room, maybe the eastern corner of my room, perhaps if things get really crazy--the bathroom, but there is not much to write home about. It's a generic white hotel room, a room that I will be stuck in for the next month, a thought that fills me both with dread and a very small sigh of ok then.

Ok then.

Breathe with me, would you? Inhale as the image above expands; exhale as it contracts. Loosely focus your eyes on the image without concentrating too hard. Go for as long as you feel comfortable and if your breath begins to become out of sync with the image, that's ok. It's all ok, ok?

After all, my only job right now is to just breathe. Inhale, exhale, I can do this. Hell, I am doing this. Today was my 2nd day of Campath administered by an excruciatingly slow drip into my picc line. The Campath has given me a terrible headache and I feel crazy dizzy. A little nauseated, but other than that I am fine so far. Inhale, exhale, it is going to get so much worse.

I have Friday and Saturday "off" which is good because it is Shabbat, and the whole city slows down from just before sunset on Friday until just after sunset on Saturday. Shabbat is a day of rest and spiritual enrichment, and while I know there are a thousand things more important than this, Shabbat means that most stores are closed, many Jewish people do not drive during Shabbat, and turning electrical devices on or off is prohibited as a melakhah. There is even a Shabbat elevator here in the hotel. During Shabbat, this elevator stops automatically at every floor, allowing people to step on and off without having to press any buttons as that would be touching an electrical device. Some Orthodox also hire a "Shabbos goy," a Gentile to perform certain tasks prohibited by Jewish religious law during Shabbat.

Anyway, my dad and I have some wilds plan for Shabbat that include putting together a 15,000 piece jigsaw puzzle and listening to Serial on Podcast. Then Sunday I have my Bone Marrow Aspiration and two days of high dose chemo. Inhale, exhale, that's all I need to do right now.

Wait! I do have one more thing I need to do. Samira, the head nurse at CTCI--she is smart, kind and funny as hell. At our first meeting with me and my dad, she was telling my dad that he does not look 
72, that he is so handsome. I told her that in the States we call that a Silver Fox, and without missing a beat she said it should be Silver Fucks. Needless to say, she is my people. Anyhoo, Samira came up with an idea today that before discharging someone she is going to make them dance with the nursing staff and she will make a video of it. So between now and roughly 30 days from now I need to decide on my song. I'm thinking something bad ass but happy...but not Happy. Suggestions?

xo,
S

A Little Picc Me Up

So today. Ahron, the driver who looks like Robert DeNiro circa Meet The Fockers but has the crazy kinetic energy of You Talkin' To Me DeNiro without any of the rage, only sweet, sweet positivity and boundless charm, Ahron, the driver took us to the hospital for me to get my picc line. I didn't understand why we needed to go to the hospital for this. I thought it was a simple thing like an iv line they keep open, but no. We sped across Tel Aviv (I think), all while Ahron rapid fire told us about the city and why it's important to stay positive, always positive! Very emphatic like that, interspersed with him suddenly yelling in Hebrew on his headset. At times I thought maybe he was still talking to us--you talkin' to me?--and then just as suddenly he would switch back and yes, he would be talking to me.

Then we got to the hospital and we were walking very very fast down slick hallways and into 4 different elevators to get to a desk where they all spoke in Hebrew, sometimes flicking their head in my direction so I just smiled back, the smiley American who only speaks one and a half languages while everyone here speaks fluent Hebrew, English, Russian, Arabic, often more. Finally they led me to a bed and told me to put on a gown, which I didn't understand because wasn't this just an iv line sort of thing? Easy peasy, stomach no queasy? Here I am taking a picc of myself--ha ha! see what I did there?--in the hospital bed totally not understanding what the fuck is going on. Dumb American...

My hair is just tucked beneath my head. It's all still there. Admittedly this is a terrible no-makeup pic of yours truly, but something tells me this treatment is not about looking my best.

I mean, this is what I was surrounded with. Is this sign telling me to wash my hands? Slippery floor? Emergency room? You tell me what is about to happen.

When they put this on my wrist I started to really question my whole "just like an iv line" theory...

Finally they wheeled me away and, long story short, took me into a surgery room where they gave me a few shots of anesthesia, punctured my upper arm and snaked a catheter line into a peripheral vein, advancing it close to my heart. Quick! I have to start a new paragraph because that last sentence gives me the heebee jeebees.

Lesson learned: watch more Nurse Jackie and/or don't be afraid to ask questions. Might as well embrace this whole Dumb American thing seeing as how I told the nurse that el papel está ahí when he couldn't find my form, and Spanish isn't even the half of another language that I speak.

Tomorrow: first day of chemo. Chemo-lite? Campath. ¡Si se puede!
xo,
S

Siamo Qui

We are here. (In Italian.) I find myself whispering excusez-moi and lo siento mucho because I know I am somewhere not home, but where that is exactly sits way back in my mind so far. Shalom. They say shalom as a greeting and I like it, love it, but I feel like a fraud saying it yet. Hello.

Hello. My dad and I went on a walk down Dizengoff and saw this guy. I like how his package is shiny, as if people pet him there like a buddha belly for good luck. (I regret not doing so myself.)

I read that in Hebrew slang they say l'hizdangef, or להזדנגף‎ which means to Dizengoff oneself, to stroll down Dizengoff as it is a street known for strolling. Maybe I will co-opt that when I get home. Let's go l'hizdangef the Depot, I might say. But only when I get home. Kind of like how I only speak French to non-French speakers.

This is just a fruit stand I thought was pretty.

Of course I'm not here to sight-see, a fact that weighs on me when I am at the Super Pharm staring too long at shelves of shampoo. At least I think it is shampoo. Everything is in Hebrew, and I realize this must be what it's like to be illiterate, all the world a mishmash of strange looking scritches. Of course I don't need more shampoo anyway seeing as how I will be losing my hair in a few weeks.

Which brings me to why I am here. Hello again. Today I got my treatment schedule, as in: shit just got real, yo. Here it is for all you curious types, medical-minded or those undergoing HSCT:

Tomorrow: Get a picc line inserted. This is not necessary for everyone, just people like me with T-Rex arms and veins the size of angel hair pasta.
Wednesday (day -6): Campath 3mg
Thursday (day -5): Campath 9mg
Friday (day -4): day off (because I will be feeling sick)
Saturday (day -3): day off (sick again)
Sunday (day -2): Fludarabin 40mg/m² and Cytoxan 60mg/kg, then Bone Marrow Aspiration. This is the big time chemo followed by them taking out the stem cells. For the next 3 days I will be staying at the clinic.
Monday (day -1): Fludarabin 40mg/m² and Cytoxan 60mg/kg. More big time chemo. I was told this would be brutal.
Tuesday (day 0): Bone Marrow Transplant. I get my stem cells back, as in January 13 will be my new birthday! They said I will feel better immediately following the bone marrow transplant, but still pretty crappy, a.k.a. there will be varying degrees of feeling really fucking terrible.
Wednesday (day 1): If all goes well and there is no fever, should be able to go back to my hotel room, and this is when effective isolation starts. I will feel pretty awful for the first week, and then around day +11 through day +14 engraftment happens, when my immune system starts to rebuild.

I was also told that my hair will start to fall out around the time of engraftment. So I will trade my hair for a healthy immune system. Side note: while typing that I flashed on there maybe being a biblical story about hair (side side note: can you tell I have never read the bible?) so I Googled it and yeah, something something about Samson and his hair as his strength and it all went down in Israel, yadda yadda, I skimmed it and hope that there is no corollary.

View from the hotel of The White City with the Mediterranean in the distance.

So that's that. Except it's not, of course. There is so much to say about the nurses at CTCI (amazing), the culture (very different), the food (not sure what I am eating, but that's cool), and beneath it all is a deep guttural aching for Bryan, Zoey and Ozzy, but I will save that for another time.

Adios muchachos,
S

This Is It.

Go time. Insert sporty pep talk here, whatever, I have never been big on organized sports but yeah. This is it, and I am scared shitless. (Though whoever came up with that lovely idiom doesn't know much about fight or flight, nervous tummy and the ilk.)

By the time you read this I will be on my way to the airport, and for all of my posturing I have to admit I am really fucking scared. I am scared to leave my family. I am scared I will get there and they will find a reason they cannot treat me (it happens). I am scared to feel horribly sick and weak. I am afraid of losing my hair. I am afraid of dying. 
But I am more afraid of having MS.

This whole BALLS thing. Well now I know what it's like to be so afraid that your balls crawl up into your stomach, because damn. I have had butterflies for days now, a constant churning. One night I had a very vivid dream that I was drinking a frappuccino made of cortisol, a whipped blend of stress hormones, and I told myself to remember to look up Cortisoluccino when I woke up to see if it had been trademarked. (It hasn't, and you can have it if you want because it tastes like metal and fear and I doubt there is a market for that.) I am sick with fear. But also MS, so here we go.

If you know me in real life, or not even, if you sent me texts or emails, wrote comments or called, whatever, please pardon the fact that I may not have gotten back to you. I cannot tell you how much I appreciate everything, but I also needed to be quiet these last few weeks, to turn inward, to drink up my family.

These guys, three people who I love more than I ever knew it was possible to love anything. We went to the beach on a day that was sunny and cold and unbelievably beautiful.

 We sat in the sand and breathed in the salt. Some of us ate raw oysters (not me).

(Not him either.)

We hung out with this big guy, an elephant seal who makes me question everything I know about both Darwinism and God. Have you ever heard the gutteral clicking sound they make? It's pure magic and slightly gross.

We also went to the skate park, because that's Zoey's New Year's Resolution, to learn how to skateboard. I love her, this girl who wrote a poem saying she wants to learn to be brave and yet fears nothing.

I watched my kids these past few weeks with shiny eyes, like how you look at a newborn in disbelief and awe, slightly afraid because you just can't believe they are real.

I was a touchy mom these past few weeks, a grabby, talky, kissy mom who blew directly into the open mouth of this guy when his pasta was too hot.

 And this--Bryan. I watched him teach Zoey how to skateboard and he was my 7th grade crush again, always. I could watch him skate forever. Or until he sits down next to me a little sweaty and we hold hands and decide it's time to go home and make hot chocolate.

So that. These photos. For the next 6 weeks I will be posting a lot probably, posting photos of everything that is new to me: a new country, new alphabet, photos of new fruits in the market, a new medical procedure, a new immune system. I will write about it all because I don't know how else to get through it.

I apologize if this post is disjointed and poorly written. It's a reflection of my mind right now, and my mind is extremely disjointed and poorly written.

For now, I leave you with this, something I wish I had written because it is so right, a perfect quote by Cheryl Strayed, from her book Tiny Beautiful Things:

"Nobody will protect your from your suffering. You can't cry it away or eat it away or starve it away or walk it away or punch it away or even therapy it away. It's just there, and you have to survive it. You have to endure it. You have to live through it and love it and move on and be better for it and run as far as you can in the direction of your best and happiest dreams across the bridge that was built by your own desire to heal."

xo,
S

p.s. Here is a photo of the "advent" calendar I made for the kids: 43 cards taped to our chalkboard wall. Each one is sealed up with a love note from me and 2 chocolates. 9 of them have a Treasure Hunt leading them to where I have hidden presents for them around the house. Fingers crossed Ozzy doesn't tear them all off within the first few days...

 

May You Always See The Wonder Of It All

2014

2013

2012

2011

2010

2008

2007

From my family to yours, wishing you the happiest of holidays and a healthy (!) New Year.

Love,
S

Headshots of Hand Models

First off, I need to know what to do with my life that would merit the title of my autobiography being Headshots of Hand Models. Other than becoming an actual hand model, because one time? I worked with this guy who had a possible fetish and he hand-shamed me by saying the crease between each of my fingers runs too deep. And now I notice it all. the. time. Anyway, I am kind of enamored with the very idea of headshots of hand models. Like this one.

Please note I said enamored and not obsessed. I hate the overuse of the word obsessed. Even worse #obsessed. Often used with #literally. #killmenow

But why focus on the negative when there is this? So much so positive.

I love him. And her. She looks like she would be a good time, no? Like you never know what she's going to say. She's wacky like that.

I'm thinking I need to write a book about this MS thing. Or is that what everyone says who is misdiagnosed for 15 years, called a hypochondriac, finally diagnosed after her mom and step-dad die, then raises money for a life-changing/saving stem cell transplant in Israel? I know. Such a goddamn cliche. But I think I might need to. It just might be the only book where the acknowledgment section is written before anything else. (Don't worry--you're totally mentioned.)

So I guess I need to know: could I get away with the title Headshots of Hand Models? Kinda' like that one friend of mine who wants to open a store called Buttons! Buttons! Buttons! only she wouldn't sell buttons at all but something else, anything else? Or should my book also be called Something Else, Anything Else? Or? ________?

While we're at it, I'm also putting together a kick ass playlist, you know, songs for when I'm feeling horrible in Tel Aviv and need to go all Eye of the Tiger on this Scheiße. So far I've got Welcome to the Jungle, maybe a little Back in Black, The Clash anything, When The Levee Breaks, Daft Punk, NWA, Happy Birthday by The Ting Tings for the day I get my stem cells back. Any suggestions for me?

Because this is happening. All of it.

xo,
S

Amazing photos from here. Except the pics of me. Photo credit for those is all Zoey. Please no comments on the unsightly deep creases where my fingers meet my hand.

My Boob (An Epistolary Thank You)

For the last 3 weeks I was pretty sure I had breast cancer.

Let's just say that if you have a faint red mark on your boob don't Google "faint red mark on my boob" because the only thing that comes up is site after site detailing a highly aggressive (and yes--rare) disease called Inflammatory Breast Cancer. I mean, if you want to grab the URL www.innocuousredmarkonmyboobthatmeansnothing.com it's totally available, is all I'm saying.

So I went to my gyno thinking that she would tell me I was being silly but instead she cocked her head and said hmm. Which everyone knows is Doctorese for You Might Be Fucked. But she gave me a 10 day course of antibiotics and said if it didn't go away with that then we would do a biopsy. So 4x a day for 10 days I took antibiotics and 104x a day for 10 days I went into the bathroom to see if it was going away. Side note to whoever walked in on me in the bathroom at work while I was looking at my boob: See? I'm not a perv. And no, my bra wasn't twisted like I said it was, we both know that.

You're never going to guess what happened next...the faint red mark did not go away after 10 days on antibiotics. So I went back to my gyno who then said hmmm. (Note the extra 'm.') She then referred me to a breast surgeon. Of course all of this happened in the stop motion time of healthcare referrals and fear.

Meanwhile, I had a fundraiser at work and another one with a bunch of friends and felt like a lying liar face who was going to have to awkwardly return all the money once I was definitively diagnosed with Inflammatory Breast Cancer and could not go to Tel Aviv after all. It was awful. I was awful. People hugged me, called me brave for my impending stem cell transplant, asked all the right questions, said all the best things and all I could think of was how to tell people I could not stop to stop my MS when I had a cancer with only a 37% survival rate. And then I would go into the bathroom to take more pictures of my boob to compare to the other 100 pictures I had taken to see if it maybe looked a little better. Or was it worse? What about when I lay down? Wear this bra? In this light? Like that.

I had the breast punch biopsy on Tuesday. Which means that my faint red mark is pretty much gone as it has been replaced by a huge nasty bruise and two stitches. And then it was Thanksgiving and I felt not so much thankful as I did fearful and made sweet potatoes after ordering 5 cute cheap beanies on ASOS because either way I figured I would lose my hair.

There's really no chase to cut to here because obviously I am ok. The breast surgeon emailed me on Saturday (bless his heart) to say that the pathology report came back negative and it was just an unexplained mild inflammation. No big deal. (His words.) So now I "just" have MS again. And I "get to" go to Tel Aviv and am "lucky" that I am in good enough health to have my immune system destroyed. And I am belatedly so very thankful for that and everything else: my family, my friends, my bruised boob that means nothing, my pink pajamas with the elephants on them, for chai tea and bell peppers, the sound of the rain as I type this. Sometimes it's hard to love life so much, to be so thankful and know how blessed I am because with that comes a constant fear that it will someday be taken away. But that is a post for another night when I am listening to The Smiths and not "Last Christmas" by Wham.

No, tonight I am thankful for my boob and for you. Because I have such an amazing community of friends--even if I don't know you know you, you are all now my true friends--because on top of everything else I have also reached my fundraising goal. And I don't have to give it back. :)

Thank you.
Love,
S

In My Own Head (As If I Could Ever Be In Anyone Else's)

So this place, this blog, it's pretty much my mind. Which is why I haven't posted in awhile. I haven't really wanted to hang out with my mind much. I'd rather hang out with a book or any Real Housewife; I'd rather sleep. Truth is, I am so freaking bored of myself and my story, this stuff that's going on. I'm tired of thinking about my health, of talking about Tel Aviv, of being the topic of conversation, even when that conversation is in my head. It seems that no matter what is going on, my mind turns to, well--here, let me show you...

Pretend Conversation You: Hey, what do you think about this whole Bill Cosby thing?
Pretend Conversation Me: I don't know. Reminds me of that time I was diagnosed with MS.
Pretend Conversation You: ?

Let's try that again.

Pretend Conversation You: Did you see Piperlime is having a 25% off sale?
Pretend Conversation Me: Really? I should see if they have any cute beanies. You know. For when I go bald. From the chemo. For my stem cell transplant. You know, the one that is ONLY 45 DAYS AWAY.

It's exhausting. And boring. And that's to me, in my own mind. I can't imagine what it's like for the people around me. So I haven't really known how to blog lately, how to keep the delicate balance of honesty with entertainment, how not to lapse into the sturm und drang of a woman on the edge of something, loading up shopping carts across the www with beanies and scarves, earrings that won't make her look like a goddamn fortune teller. 

Because for the record, here's what I think of that whole Bill Cosby thing: we will never ever know the truth, but the damage has been done one way or the other anyway.What else is there to say about any of it?

xo,
S

The Impending

You know the quiet rage of a gap in the line? Maybe you're at Starbucks in the morning (I'm looking at you Market at 1st), or you're waiting for the bus, and the person in front of you is looking at their phone and doesn't shuffle forward. The gap, it grows. And the widening space sits on your chest, tightens your mouth until all you want to say is fuck--go! (The worst is traffic. The car in front of you just kind of stopped as if thinking about something more important than forward momentum. Do you do it? Tap your horn? Your hand itching to spit out its own manual-version of fuck--go!)

Because this is how I feel all the time lately. All the world a gap in the line, and I want to tap it on its shoulder, excuse me? Push it, really. Go! This waiting. I have my flight reservations--January 2--my hotel, though there are still a million tiny details to get done before I leave...the waiting. It's excruciating, really. The fact that it's all sitting out there just a few spots ahead. Soon it will be my turn, but for now I make peanut butter and jelly sandwiches and put away the groceries, just standing here.

Meanwhile, Ozzy has decided he hates buttons. Won't wear anything with buttons which translates to an abundance of elastic waistbands and stretch, like a track suit that never sees the track. If I'm wearing buttons he recoils, then hugs me like a very uncomfortable man hugs another man. Buttons! He says the word with such derision, such absolute moral disgust that it has become my go-to swear word. Aw, buttons! My mouth full of clattering plastic and holes meant to fasten things together.

And so we wait.
xo,
S