Now For A Break From Our Regularly Scheduled Programming...

Added to the list of things I never thought I would have to say to anyone: I told you not to close the Lego table on your penis! (See also: this is why we wear undies.)

Then this: trying to explain why I will not kiss that particular owie. Never ever, sparkly object--Look! It's a month old jerkified Red Vine I found at the back of the cupboard and you can have it!

And for those of you that might not have a child or a penis or both, I give you this genius life hack with Legos. 

Off to corral my cords tout de suite (that's what he said).
xo,
S

BALLS

BALLS, you guys. First off, I didn't really intend for that to become my rallying cry, but it looks like it may be, sort of like Wolverines! was to Red Dawn, only when I made that analogy to a coworker she had no idea what I was talking about so I am also old. Balls! So many of you emailed me BALLS, Facebooked me a sweet "balls", more than a few times at work I was balled in the hallway. Which sounds so wrong but is so very right.

Thank you.
I was going to let my previous post sit for a few days because its long and a lot, but I couldn't NOT not say thank you. A triple negative to mean an exponential positive. It's surprising how much stronger I feel knowing that you are all cheering me on.

Of course now I face another challenge in that after this is all said and done, I was planning on getting a tattoo to honor what I have gone through.* I was thinking maybe some deep and meaningful Hebrew lettering I may come across in Tel Aviv? The chemical compound of the chemo drugs they give me? I don't know, but right now all I've got are BALLS, and while that is an awesome battle cry, I don't really want hairy testicles forever on the inside of my arm.

Thoughts?

xo,
S

p.s. Here is the link again if you want to donate.

*I believe one has to wait at least a year after HSCT to get a tattoo due to the weakened immune system, so I've got some time.

The Truth

This is your central nervous system. Science might argue that this is everything that you are.

I beg to differ.

Fuck. I wish I could wax poetic around this post. I wish I didn't have to write this at all, but I do. For many reasons. But I would also be lying if I didn't straight out tell you that I am so scared to tell you all what I've been dealing with.

I'll just say it. 

 

*deep breath*

 

In May I was diagnosed with Multiple Sclerosis. And I know some of you are thinking "no way," that's just Susannah being a hypochondriac, anxiety, we've been hearing her being afraid of this for years...to which I say, true. And I really hate being right.

Thinking back, I felt my first symptoms in college, and then, as you may or may not know, I have had vague sensory symptoms throughout the years. Everyone told me it was anxiety: my mom, my dad, Allen, my friends, even neurologists that I went to. And when a doctor says you're wrong, that you're just a hypochondriac and crazy, then you start to believe it. So every time I had a symptom I would feel even crazier, and think that I was weak for being so anxious that I could actually make myself feel symptoms. It became part of who I am...hypochondriac Susannah, ha! Isn't she a loveable mess of a girl?

A long time ago, when we were 21 or so, Bryan and I went to Vegas with some friends and had this system for winning: we thought that if a roulette table hit on a color consistently for 7 times then the next time it would hit the next color. We played this system for the entire weekend and won big. It wasn't until later when I understood how statistics worked did I realize the system was flawed. The 1st, 2nd, 3rd or even 7th time had nothing to do with the 8th roulette spin. Every spin had the same odds of hitting red or black. Winning big was just luck.

I've been thinking of that story because what the fuck? Allen had MS, and two months after I have to watch him die I am diagnosed? What are the fucking odds? How can that be? It's just too strange. Too fucking wrong. I have been incredulous, depressed and angry, really fucking pissed off, actually, but I am slowly coming to the realization that I had just as much of a chance of getting MS as anyone else, no matter the fact that Allen had it or that I was so afraid of it. Just because you're paranoid doesn't mean that people aren't out to get you, etc.

 

Since May I've had to reinvent myself. That is, I was so used to thinking I was anxious or so empathetic-Indigo-child special that I took on Allen's symptoms, and now I know that none of that is true. I am not anxious or a loveable hypochondriac, but a maybe not-as loveable woman who is always right. Because let the record state: I. Was. Right.

So what do you do when your biggest nightmare comes true?

When I was first diagnosed in May I wished I were dead. That is hard to admit--defeat, but I felt truly defeated. I mean, I don't want to do to my family what Allen did to our family. His illness was a tragedy on so many levels. I felt damaged and flawed and embarrassed. But of course I can't die because I have 2 kids and a husband and a life that I love more than anything. So that strikes out that possibility. Then there were strong moments when I told myself that Allen was the absolute worst case scenario MS (he was), and that most people with MS do not progress like he did (they don't). I tell myself that more than any other game or story or whatever, that this is how I can teach my kids best how to navigate life with resilience, humor, courage, grace and kindness. (Then I usually tell myself to shut up because I have MS, stop being such a fucking Pollyanna...)

But seriously. Here is where things are: nothing has changed. I can still move and walk and everything. I was only diagnosed because I got an MRI for a stiff lower back and they saw lesions. And then more MRIs and blah blah blah, here we are. My neurologist says that the best predictor for how things will go is to see how things have gone, i.e. because I have so-called "mild" MS I will probably be ok. To which I say fuck her.

 

The neurologists have been wrong for 15 years now so I don't exactly feel placated. At all. MS is famous for its unpredictability. And I am not willing to wait and see what will happen.

 

So again I ask: what do you do when your biggest nightmare comes true?

 

You fight the fuck back.

 

Soon after I was diagnosed I did a lot of panic-Googling and came across something called Hematopoietic Stem Cell Transplant (HSCT). This is a procedure that has roughly a 72-80% chance of halting MS (as opposed to MS drugs that have up to a 60% chance of only slowing disease progression, but not of stopping it). While I am not sure if "cure" is the right word--semantics and all that--it is the ONLY known way to stop the disease. So call it what you will; I call it a no-brainer.

Spoiler alert: In January I am traveling to Tel Aviv to undergo HSCT.

The easiest explanation of HSCT is this: the patient has her stems cells removed via bone marrow aspiration or peripheral blood, then given high dose chemotherapy to ablate the immune system. Then the patient is given back her stem cells to re-set the immune system. Think of it like a re-boot of your computer, wiping the hard drive clean and starting over. The immune system has to learn all over again which things to fight (pathogens like bacteria and viruses) and which things to leave alone (the myelin sheath of that beautiful Central Nervous System).

HSCT is currently in Phase III clinical trial in the US, but the acceptance criteria is quite narrow as they seek FDA approval. I was not accepted. However, there are many international hospitals and clinics that have been performing HSCT for auto-immune diseases for years: Germany, Italy, Denmark, Canada, Norway, South Africa, Russia and Israel.

I have been accepted for treatment by the International Center for Cell Therapy & Cancer Immunotherapy in Tel Aviv headed by  Prof. Slavin, the man who pioneered the use of HSCT for MS. I check in on January 4th and will be there about 6 weeks.

Unfortunately, HSCT is not cheap. Treatment alone is $128,000 plus I have to stay at a sterile hotel that's connected to the clinic  at roughly $15,000, airfare, food, expenses, etc. for a grand total of $160,000. I am looking to raise $85,000 through a GoFundMe account, something I find more uncomfortable than any Bone Marrow Aspiration. But a girl's got to do what a girl's got to do, and all that...

Here's the thing: I am not yet willing to identify myself as someone who has MS. I don't want to be your coworker with MS, your friend with MS, or that mom of your daughter's friend at school, you know the one? The girl who has MS.

No. Instead, I am going to be that girl you know who beat MS.

And whatever you can contribute to help me do that, I cannot thank you enough. Please visit my GoFundMe page here.

 

Just think (this being one of my very favorite games)...this time next year I won't have MS. Hell, by Valentine's Day I won't have MS. I will be bald, but I will be healthy. And maybe, just maybe, we will look back on this and laugh a dark humor kind of laugh...remember that time I had MS?

 

Ok, hitting publish now before I chicken out.

Thanks for reading this very long post.

 

xo,

S

 

p.s. If you want to learn more about HSCT, please visit this blog written by a scientist who had the treatment done for his own Secondary Progressive MS and now dedicates much of his time to informing others--I wouldn't be hopeful like I am without George Goss.

The Science Behind The Treatment

Summary of Treatment Facilities (dated 2011) 

 

p.p.s. Let me know if you have any questions about my diagnosis or the treatment. I want to be open about this in the hopes that it might help someone.

 

p.p.p.s. So let's say you do work with me. Or we're casual friends somehow and I see you tomorrow and there's that weird awkward thing where I think that you might know now and neither one of us knows what to say...yeah, that moment. To that moment I say hi. I am totally fine being out now. Yes, it's scary as hell, but I feel stronger the more people know. So let's have a code word, maybe, something to break the strangeness, and let's have that code word be BALLS. Because this takes BALLS, sure, but also because saying BALLS apropos of nothing makes you smile and because when BALLS enters a room there's really nothing more to say except to shrug because, yeah. BALLS.

xo (again),

S

How Do You Answer The Rumors That You Are A Silly Bitch? alt title: Liebe meine Apschminki!

Things are getting a little Sprocket-y around here what with The Unspoken Thing and deaddays (which is the opposite of a birthday, duh). Have you ever thought about that? How every year you pass by your own date of death without even knowing it? Like maybe years from now you will die on September 16th and here we are--today is your very own deadday! Shit. Blow out the candles because there I go again.

Wait. I can fix this.

KITTENS! 

(Subhead: Kittens That Aren't Dying!)

We got a new kitten. Make that kittens. Which makes me a crazy cat Sprocket lady, but that's cool. 

Meet Cinque, pronounced Cheenkway, Italian for 5 because he's the 5th cat Bryan and I have had together.

And this is Ike. Pronounced Ayiiikk, as in Not Turner but Eisenmann, the child actor from Escape To Witch Mountain.* 
*Not really, but side note: my brother was a dead ringer for that guy when he was little and used to get asked if he could move things by playing a harmonica which really confused me/shattered my soul because no one ever asked me if I were Kim Richards and I subsequently tried very hard to talk to animals for much longer than I should have just to prove them all wrong because I really was Tia/Kim Richards in my heart of hearts and now she is my very favorite on RHOBH. Team Kim! slash Me!

So yeah, kittens. I mean, KITTENS!

Now let's just hope they don't die.

xo,
S

This Time Last

A game I like to play. This time last week I was at work writing about makeup. This time last month I was on vacation. This time last year I was holding my mom's hand.

But this time today I have butterflies in my stomach. Isn't that strange? Of all the things I thought I would feel, I never once thought I would be nervous.

This is what I remember: she had not spoken for days, maybe a week. Had not eaten. Her eyes were not really closed. The Hospice workers told me they had never had someone hold on for so long, and this made me feel both proud and sad. I wanted her to know that she could go.

I remember pulling the sheets up at the end of her bed and feeling like I was doing something I shouldn't be doing. But I had read that the skin gets mottled before death, the palms of the hands and the soles of the feet. So I pulled the sheets up and held her feet. They were purple and blotchy. I went out to tell the Hospice workers about her feet and that I was going home to get some stuff so I could spend the night there, but they said no, her breathing was not yet rattled. They said I should come back in the morning and plan to spend the next night there. So I kissed my mom and left.

This is what I regret, that I was not there for her when she passed. I should have been there, holding her hand and not so concerned about the soles of her feet.

This time today it's been a year since. I try to remember her strong, happy, her sense of humor, her wit.

Dressed as Nurse Ratched for Halloween.

Here. Here is a story I want to tell about my mother. (If you are my dad, however, or even my in-laws, you really probably don't want to read this next part.)

(Trust me.)

One night a long, long, looong time ago Bryan came over to my house to help me with a speech I had to give in my senior high school Humanities class. It was about Bruegel, the Flemish Renaissance painter, which really has nothing to do with anything except maybe The Seven Deadly Sins. At the time we lived in a house with Jack and Jill bedrooms for my brother and me, only my brother was in college already. So Bryan and I were in my room with the bedroom door closed and locked doing something we really shouldn't have been doing but we were doing it, or I should say *I* was doing it to him, when all of a sudden I felt Bryan's body stiffen. Like his entire body. It all happened so fast, but I looked behind me and saw my mom's reflection in the bathroom mirror. Shit! Shit! Shit! It was like a funhouse reflection of ohnononononothisdidnotjusthappen. She had come through my brother's room to tell us something and instead saw something. Of course she turned and fled, leaving Bryan and me scrambling to get dressed. Bryan was freaking the fuck out, saying he was never coming over again, that he was going to leave through my window, etc., etc. when all of a sudden a folded up piece of paper slid beneath my door. I unfolded it to read:

Dear Susannah
Please know that I will always love you, no matter what you do. And I will never tell your father what I just saw.
Love,
Mom
p.s. Bryan's tips on how to give a good oral report are better than any I would have come up with.

And that, my friends, is how witty my mom was. I opened my bedroom door and she was standing there laughing and gave me the biggest hug.

So yeah, I just honored the memory of my mom with a story about me giving Bryan a bj. But we're married now so it's all legit, plus my mom always loved that story even if we couldn't really look each other in the eye when talking about it.

Now I'm off to go back to bed, another way to honor her. If you don't believe me that lazing around in bed on a beautiful sunny day is a way to honor her, well...here is a Valentine I found that she made. For her bed.

Also, if you knew my mom at all in real life, just watch this video of Bette Midler signing The Rose and you can truly sense my mom. She loved to play this song on the piano and sing it. She had the prettiest voice. So this is how I am ending this post.

This time last to this time next and forever. I love you I love you I love you, and I miss you so so much.

xo,
S

In Other News: Sometimes That Is Enough

Remember when I used to post stupid stuff about vaginas and leopard print coats and it was 2007 or 2010 or somewhere in between when I thought turning 37 made me old? I know. What a total lightweight I was.

Which is why I'm posting this pic today. Because shit is about to get heavy in here, like when the news reports that a storm is coming and you look out the window and even though the skies are calm you know it has to be coming if they say it's coming. So I'm thinking it's coming? Friday will be the one year anniversary of my mom's death.

Which might be why lately when I have wondered what time it is I look at the clock and when I look away I still don't know what time it is. So I look at it again and I still don't know, and when I look a third time and someone asks "what time is it?" I have to shrug and say "I don't know." My head is slow with sand and what, and the only thing I know for sure is that even though it's not 2007 or 2010 it's time to look at this photo and giggle because, indeed, there is a vagina on his neck and sometimes that is enough.

xo,
S