Jenkins

I am so in love with my family. And I'm not just talking about Bryan and the kids, although yeah, I have to watch how hard I hug them, because sweet Jesus, they are squeeze-y. No, I'm talking about my family family: aunts, uncles, cousins, second cousins once removed, removed from what, I don't know because I love them so.

When I was in Israel, which--well let me just back up. I kind of hate starting anything with when I was in Israel because I don't want that to be my thing. I don't want that to be the most interesting thing about me. Whatever. Moving on. Love. My family. When I was in Israel I felt terribly far away from everything that made me me. So I pulled the chemo card and sent an email to my extended family to initiate a family reunion. It had been too long since we had all been together. I didn't want to wait for another wedding or god forbid a funeral to see them.

My Aunt Eleanor offered up her farm in New Hampshire along with a family summer cottage 20 minutes away, and after months of exchanging emails it was set.

So last week we traveled from San Francisco, Boston, Denver, Phoenix, Oregon, Nebraska and Santa Fe and spent time teasing each other, laughing, swimming in lakes, kayaking, looking through old photos, and staying up until 4am to talk. It was one of the best vacations I have ever taken.

The farm, aka Uplands.

Oz walking from the cider press barn with all the tractors to the original barn with the chickens.

He was more than a little infatuated with the chickens. In fact, I am trying to figure out if I should do the whole urban-chicken-thing, although cleaning cat litter is already too much for me.

Me and my cousin, Tess. She is my sister from another mister, although that other mister is my uncle so technically that means she is my cousin. But she may as well be my sister. One of my favoritest people on earth, and the only one who likes to do bad accents as much as I do.

Zoey and cousin Ian chilling in the hammock. Some of my best childhood memories are with my cousins, and I so hope Zoey and Oz have the same experiences.

Speaking of cousins, mine are tall. Farish, 6'8", Lucas 6'6", and Georgia, 6'. Not pictured: Oliver, 6'4". I got the hair that flairs red with the sun, freckles, brown eyes and the twisted dark humor, but sadly I did not get the tall gene.

Lake swimming! So much lake swimming. It was a first for my west coast kids, but they loved it, hard. 

How could they not? There was a Sunfish, kayaks, a canoe, a row boat, a rope swing over the lake, and a thousand water skeeters that stopped no one.

Zoey and Ian in the kayaks.

Ozzy was pumped on jumping into lakes.

He also loved the tractors. So chickens, lakes and tractors = his new favorites.

Also...children of the corn. Or El Hombre of the corn. Whichever.

We stayed at Tip Ridge, my aunt's summer cottage on a lake and it was straight out of On Golden Pond. Here are the cousins reading a book. I mean, right???

The sun porch might replace a remote beach on Mykonos as my special place I go to in my head when I am getting my blood pressure taken. So. Freaking. Peaceful.

Forget freaking. It was FUCKING AMAZING.

Back at the farm we went to the frog pond, picked apples and played field golf.

And this happened. But I don't like to think about it because creep-to-the-New England-eee.

On the last night we had dinner in the barn and watched old family videos including one that all of us older cousins made on Christmas 19 years ago called The Real World, Santa Fe. I hadn't seen it since we made it in 1996. We were 24 and drunk and stupid and wow, it was embarrassing. But fun. Fuck, we have fun together.

You know, chemo sucked. I cried, I puked, I even pooped my pants a little, but goddamn if it wasn't worth it to remind myself of the importance of family. I love these people, my tall freckled witty smart family who not only reminds me of where I come from, but where I can always go.

Do me a favor and call a cousin today. ;)

Love you all,
S

And a special thanks to my Aunt Eleanor for hosting, and to Susan for organizing.

"Like"

The year I was born a Big Mac cost .65 cents. I wish I could taste it. I bet it tasted different.

Zoey hates her camp this week. Feels left out from her friends, is afraid of Stand Up Paddleboarding, told me to throw away the camp shirt because she is never going back there again. 

She has been on Instagram for a few months now, set to private. We sit together and look at her friend requests and delete anyone I don't know. She posts pictures of Cinque and Ike, her Littlest Pet Shops, of her brother asleep. She "likes" every single photo people post, and when I told her you're not supposed to do that, only the ones you really love, she asked me why. I don't know what I said, only that she told me that's stupid. Why not "like" every picture because it makes people feel good?

Tomorrow she is not going back to that camp.

Check Out My New Hair Don't

This is for those of you who say, oh, but it must be easier! Right? Short hair. Just wash and go! Except this is how it looks when I wake up in the morning. Do not pass go, do not collect $200.

Straight up Don King. So no, it's not easier, or even easy. It's fuzzy and weird, curly thick and downright lofty. Which means my sink is littered with pomades and creams, pastes, and god I hate the word paste. (Product is not much better.) So when you see me looking like this, kind of awkward and wrestled, patted down and pulled, know that this is the best I can do and please don't look at me too long.

Seriously. Look away. A great big nasally meh. 

I thought maybe I might be ready for hair accessories, the very thought of which filled me with exclamation points and the hope of a thousand Lisa Frank stickers! Except this:

I don't know but something about it feels very Ethel Mertz, and I do not aspire to being anyone's neighbor. Maybe it's the polka dots? Maybe women over 40 should stay far away from polka dots? *sigh* So I tried another headband/scarf thingie, only...

...only there's not enough there there. Enough hair or 'do or even don't. I just kind of look like I forgot that there is a something on my head because clearly it is not serving an actual purpose.

Oh, I also tried bobby pins, barrettes, both of which were too sad to photograph, plus a metal leaf headband that would look absolutely darling on Michelle Williams. But.

It's kind of my fault. I was talking to my friend who said I just need a hair stylist to partner with, to help me grow it out gracefully and teach me how to deal in the meantime. The problem is I've always been a total hoary slut when it comes to my hair. Never seeing the same stylist twice, going wherever Groupon takes me, trimming my own bangs, Supercuts because sometimes you just need a little, you know? And now here I am needing a real relationship with someone who knows me, my hair, and I got nothing.

Nothing but a big bush. And you. Anyone have any ideas? Tips? I mean, I don't even know if I should get haircuts to clean up the back and the sides, try to maintain a short cut until some mystery switch is ready to be flipped to go long, or do I just go full bush from the get go, close my eyes and think of England?

Please send help. Especially if his name is Chaz Dean.
xo,
S

Will Be

It occurred to me today that my mom would have loved to talk about Caitlyn Jenner with me. Hours of convo right there, and it made me sad that my mom never got to know that Bruce Jenner was really a woman inside.

There are other things she will never know. That I have (had?) MS. What I look like with a pixie cut. She will never know that # is a hashtag and not the number symbol, she will never hear the song, "Happy."

This is not to say that I spend a lot of time brooding over my mom. I don't really, or I do, but I don't. It's just a shock sometimes when I realize she is still gone and that Bruce is now Caitlyn.

Of course it also occurred to me today that I have a dad who is one of my best friends. I have a husband that I geniunely like, kids & in-laws that I love. I am lucky in seventeen hundred ways and only unlucky in sixteen hundred and ninety-nine. Down 7, up 8. But who's counting?

Halloween is only 3 months away, something I also realized today when I looked at the calendar. My friend, Penny, who is a goddamn Halloween genius told me I simply must incorporate my hair into my costume, and I have to agree. I anticipate reaching Cosmo Kramer by then, maybe Al Sharpton, something with loft and fluff, definite inexplicable curl, Patrick Dempsey in Can't Buy Me Love, a poodle, a cone of cotton candy, a chia pet, a dandelion, close your eyes and make a...

What? I welcome all suggestions in the comments below.

xo,
S

Where I've Been And What I've Been Eating, + A Tour Of My House (A Fascinating Exposé On The Last Few Weeks)

Remember when I told you I was going to rehab?

Only the rehab was for sugar, and I began seeing a nutritionist who not only said no sugar but also no dairy, no gluten, no grains, no soy, no vinegar, no corn and strangely no pineapple or fluoride either? Yeah, that. Well here I am freebasing something called L-glutamine to curb the cravings of my molto dolce vita past. Life is such that I perv out on 86% cacao now, but only sparingly, choke it down chalky with a handful of raw almonds and water, but not tap water because tap water has fluoride in it and I am intolerant to fluoride. Sans fluoride and brushing with hippie paste, maybe soon I will have nasty crack teeth to match my coke whore habit of rubbing L-glutamine on my gums.* *footnote: I have never actually done coke. Just not my jam. Not that I judge you if you do. Except if you're this guy in which case I totally judge you, though you do seem rather polite. 

In hindsight, this was not the ideal time to re-do my whole way of eating, what with me going back to work. It was also probably not the best time to do a major remodel on our house, but that sort of happened by accident. See, when we went to the beach for a week before I went back to work we had intended to get new windows put in our house. Super clean, in/out, the windows were supposed to be installed by the time we got back. The old ones were single pane aluminum and you could feel the wind blow through them, that sort of boring blah adult decision thing that makes your throat close up as if swallowing a very large vitamin. But when the contractor opened the wall to put in the windows he found buckling beams which led to the discovery of rotten siding and a deck that was thisclose to collapse. And suddenly our quickie window job became a chaotic ka-ching of you're-fucked-if-you-don't-do-it-and-screwed-if-you-do, also known as re-siding the whole house, painting it, new windows and shoring up beams and a little deck rebuild. 

I should also mention that before we went to the beach for a week we had ordered a port-a-potty for the workers. My husband told them that because I am immuno-compromised we can't have everyone using our bathroom. Which was something of a white lie. Anyhoo, the day that we drove back I had to pee super bad. When we finally pulled into our driveway, Bryan parked the car and I raced into the kids' bathroom doing an impressive pee-pee dance, and gah! The toilet was inexplicably taped shut with blue painter's tape. I thought maybe that was just a construction thing, so I did some kegels and leaned down to quickly unpeel the tape from beneath and opened the lid to find a massive shit in the toilet. Like the size of a dinner plate. And a few days old at least. Someone not only took a huge shit in the toilet and didn't flush it, but also taped the lid down. And because I was kneeling down to untape the toilet, my face was inches away when I saw it. Touché dear construction workers who apparently did not like the Honey Bucket we ordered for them.

So that's where I have been. Coming face to face with shit, living in a construction site of dust and plaster, eating fistfuls of legumes, eggs and probiotics. Every morning before work we had to re-tarp our entire house, and every night when we came home we had to untarp our beds to sleep. Quite the re-entry into working full-time again. I was white-knuckling the Before-ness of it all.

Which is why I haven't been here. Because my laptop was under a tarp, but also because of chaos and dust and strange men walking into my house starting at 6:45am. 

I still don't know which one of them is responsible for the big shit, but we are very nearly almost done, so I am willing to forgive. Here is our living room today:

Note the new windows--we have to keep the labels on them until our inspection is done. The window wall was the one buckling.

Bear in mind: I am not a decor blogger. While I would very much like to get rid of my porn-backdrop stone facade of a fireplace, it's not happening because $$$, so I have decided to embrace the brown chicken brown cow vibe.

In addition to being paper thin, the previous windows also had bad bubbling tinted shit all over them, as if we were looking out into the world through the windshield of a used Gremlin. So that's gone. Though you might notice the crumbling deck is not yet done.

Ozzy's Spicoli van holds a multitude of sins/toy mess.

Speaking of which, here is Ozzy's room with new windows.

And Zoey's room. Her old sliding glass door had been installed backwards, so the lock was all wrong. Now it's all right, alright (alright), and she took the opportunity to paint her room blue. (*sob* the days of little girl pink are over.)

And finally our room. Where the proverbial magic happens. Our old window didn't open and was cracked. I chose not to take that as a symbol of anything.

So that's where I've been. What I've been eating. 20 grams of protein per meal and 7 servings of vegetables a day. Did you know there is soy in pretty much everything?! It's hard as fuck, but easier now that I have my table untarped to sit at.

Missed you all.

xo,

S

Let's Do This

This is it. This it, that is. One of many its, because let's not be too dramatic about it; life is made up of so many of them.

This is it and that was that. It's the night before I go back to work after 6.5 months of being on medical leave, and something about it feels enormous. Even though I know this is just a Sunday night like so many others, and just because I go back to work doesn't mean anything is final. That's the thing with this disease and the treatment I had--there is no closure. Just take a stand and say a prayer. I mean, I did the most aggressive treatment, the riskiest but with the best odds of success, leaving me with the most fuck you way to fight back of all--moving forward. 

So on this night before a day that doesn't mean much at all, I am going to unabashedly post a string of pics of our last week in Stinson. Because these its are why I fought so hard and will move forward even harder. In no particular order, this is its...

Bryan, Zoey and Ozzy. My loves. If it's easy like Sunday morning, then Sunday evening is sappy. Whatever, I'm owning it because damn it if they don't take my breath away.

Foggy beach mornings chasing seagulls, and afternoon wrestling on big, ploufy beds.

 The cutest cafe in the sand. The cutest kids in all the land. 

Absolutely covered with sand, cuddling in the dunes.

Commandeering beach huts and finding that the best toys are driftwood, rocks and sand.

 Horseback riding in swim trunks and wetsuits. The horse didn't mind at all.

 On top of the world (even though this ladder only goes up about 12 feet).

 Getting over fear, and finally understanding what it means to get stoked.

Pretending to be a mermaid, or a shark. Even if that shark harness looks a little sub-alt-something or other, the goggles and the cheeks kill me.

This, all of it. Even with the horror of these last few years, I am the luckiest of the luckys, and no amount of thanks will ever come close to how very grateful I am.

Moving forward with a smile in my heart and a hug in my hand...happy Monday (tomorrow) and every one thereafter.

With Thanks & Love,
S

:O :O :O :O :O :O :O :O :O :O :O :O :O :O :O

I have not been here much because I have been everywhere: the pool, park, home, lather, rinse, repeat. Which reminds me! Today I got my first real haircut! I feel like I should have gotten a keepsake photo and a lock of my hair in a baggie to put in my baby (immune system) book. I didn't, though, as the hair that was cut fell down my smock looking more like pubes than cute. 

I am grasping for time. Gasping/grasping, time/air, same diff. 

When I was in Israel feeling super sorry for myself and very far away, I found a beach house to rent for a week. I needed something to look forward to, an "after" that looked nothing like what was then my "now." I knew I couldn't go anywhere truly tropical with a new immune system, so I rented a house in Stinson, a beach town just 30 minutes away from home. It felt so distantly future then, the reservation booked for the week before I had to go back to work, and now that after is here. Happily. We leave for Stinson tomorrow. I just had my first haircut. Time is funny, both ha ha and strange.

And then there is this. Yesterday I had another appointment with my nutritionist. For one hour we talked about my bowel movements. Shooting the shit, I guess, though I had to work hard at keeping a straight face when it came to description. I settled for not looking her in the eye. For one hour. You'd be surprised how much there is to talk about poop. But this...this is my new normal. It happens.

And I am grasping at it. Gasping. All of it. Fresh pears and berries, the smell of chlorine, little bodies wrapped tight in towels, my hair that looks like pubes, the kids fighting over ownership of tiny plastic crap, my crap, afternoons at the library followed by Slurpees and family movie night.

Which sometimes means we watch a movie, but more often than not means Zoey makes a movie starring her brother. I mean, COME ON. 

Inhaling deeply and swallowing hard. Gulp.

xo,
S

Refilled Is The New Fulfilled (You Can Totally Steal That From Me)

I admit: I don't always return grocery carts to the return thingie if it's far away from my car. Sometimes I don't wash my fruit. I wad fitted sheets into a ball rather than attempt to fold them, and I love motivational quotes. I am mildly ashamed of these things, but whatever. And yes, that itself could be a motivational quote, albeit a crappy one. (Oh well also being one of my faves.)

Wondering if the glass is half empty or half full is not the point. It is refillable. I saw that quote the other day and it stuck with me. Not to get all Vicki Gunvalson  "love tank" on you (and if you get that reference then you are the other half of my BFF necklace), but I feel like my glass is full again. 

The last two years have been shit. The glass was bone dry empty and I cut my lip on the edge, that kind of shit. If you're going through hell, keep going, Winston Churchill told me, so I did. Bore down and forward, fuck this. Which is fine for a grown up (not really but yeah), but try telling that to a 9 year old. A 4 year old. You know what, son? Life sucks sometimes. It's unfair, cruel, tragic even, relentless. Deal with it.

I didn't know how to deal with it. The kids. The last two years didn't just happen to me; it happened to my family. And I could see it in Zoey and Ozzy. How confused they were when my mom got sick, how sad they were when she died. Allen dying. When I was diagnosed, we told them in bits. I didn't want them to connect my MS with Allen's death from his MS even though it was staring me in the face. There were months that I was mentally removed from everyone around me simply because I couldn't think beyond my own central nervous system. I tried to be a good mom during that time. God, I hope I was a good mom, but it's hard to know because I was so far inside myself.

So these last few months of recuperation...it hasn't just been about my immune system growing stronger. It's been about healing my family. Showing the kids that they are loved, safe, secure, always have been and always will be.

For that I am eternally grateful. I have been able to take enough time off work to really be there for Zoey and Ozzy, picking them up from school, visiting their classrooms, taking them to soccer, dance, fro-yo. One of the very best things I have done these past few months has been volunteering in Zoey's school library. I pretty much have to take a Silkwood shower afterward because germs, but I cannot tell you how gratifying it is to watch kids connect with books, to see Zoey's eyes light up when she sees me behind the desk. True it isn't one of the antiviral meds I have to take now, but it is just as healing. And if that's too cheesy for you, then I will also say that it is so freaking fun to play librarian and check the books out. Childhood fantasy fulfilled.

I go back to work in a few short weeks. Which will be hard but normal, and normal is good. All I want is to be normal. How was your day? Fine. (Fine is actually quite extraordinary.) But finances being what they are, I have to work. And since I have to work, I am lucky that I love my job. Of course I love my kids most, so I will miss the day-to-day of pick up, grocery shopping at noon, of snacks at 3 and the smell of books worn ragged by kids who turn the pages with a little too much force. I will miss this.

In some ways, some begrudgingly big ways, this whole thing has been a blessing. It taught me, Bryan and the kids that we are resilient, strong, that we are there for each other no matter what, and that while that stupid glass is going to get knocked over sometimes, spilled, shattered drink/drank/drunk, together we can fill it back up again and again until it actually spills over.

From my family to yours, santé !

Xo,

S

Step 1: Admitting I Have A Problem (I Have A Problem)

I'm in Rehab, you guys.

Which feels so glamorous to say. 
Don't get mad. 
I know addiction is serious. 
I come from a long lineage of alcoholics and addicts, so I know the reality of what it really means. But I have always been the boring one, the one to say no, I'm good, thanks. I don't drink, don't smoke. 
What do I do?

I am a hummingbird, I tell people, which makes me feel exotic and light when really I am just saying I exist on sugar. Chocolate croissants for breakfast, nutella on bananas, fruit juice, jelly beans, cookies, donuts, those little granulated jelly slices that look like an orange? I am an equal opportunity sugar-slut. You got it, I'll eat it. And if you don't got it, I'll go out and get some.

The only thing more boring to me than trying to find a specific type of hinge in Home Depot is listening to people rattle on about their diets. Learning dietary information is like trying to swallow a big vitamin. My throat closes up. I shut down. Can't. Get. It. In. But I also can't seem to ignore all the connections between diet and autoimmune disease. Gut, brain & neurons, oh my! And fuck it if I'm not a mom who owes it to my kids to wander the cement wide aisles of Home Depot while trying to swallow a very dry vitamin.

Gulp. Here we go.

I checked in this morning. And by "check in" I mean I stopped at Starbucks for a venti chai and a chocolate croissant before I had my first meeting with the nutritionist. It's not actually a residential program, but I'm going to pretend it is because that will make me take it more seriously, and yeah, it also makes it more glamorous. I am at The Betty for mah belly.

(Let me just say that I am grateful that heroin is not my drug of choice. If it were, I would be dead. In anticipation of my appointment this morning, I went on a bender last night with some pharmaceutical-grade Tollhouse cookie dough. I actually felt nauseated, I ate so much.)

(But not sick enough that I didn't have two cookies when I woke up this morning.)

My "sponsor" is a woman named Willie who I already love. Like any good sponsor, she said I can call her anytime, day or night. Which is good, because already she warned me that people with autoimmune diseases cannot tolerate gluten, and most likely dairy. Sugar is a natural no. Over the next 4 months I will be getting blood work done to see what's going on in my gut, and together we will teach me how to eat again.

More importantly, she will teach me how to eat so that my children will grow up seeing their parents eat (and stay) healthy. Lead by example, and all that...

You probably already know this, but I learned that sugar produces a release of dopamine from the reward center of the brain, a response that mimics that generated by taking drugs. And this is not just sugar found in the usual suspects, but sugar found in processed foods, breads, grilled cheese, all my go-tos. All this time I have felt secretly (I hope) smug that I somehow ducked the genetic addiction that strangles so many people in my family, only to find out that I am just as addicted as anyone else. I'm just not as fun at parties.

So that's that. God grant me the serenity...

xo,
Susannah 

p.s. I will try not to talk too much about this, both in real life or on this blog because shut the fuck up, that's why. Unless you're interested. In which case, keep coming back, it works if you work it.