Sunday, September 21, 2014

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.
 
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

17 comments:

Amy said...

Goddammit. I hate that the first comment I ever leave is to say, Godammit What the Fucking Hell. But there it is. So I've been reading you for ages and our daughters are the same age and I think you're hilarious and we have the same taste in clothes and I know we'd be super friends in real life, and ... screw MS. I will GoFundYou and cheer you on while you fight this thing.

Anonymous said...

I am confident that by this time next year, you will be happy, hairy, and fully healthy. I'm sending you healing energy, positive thoughts, and internet hugs. Thank you for working through your fears of telling your readers...I hope it brings you comfort to know that there are people around the world that are collectively thinking about you at any given moment...and wishing you well. THAT is something incredibly awesome in this shitty fucking time. WIshing you positive thoughts, great strength and a speedy recovery on this next step of your journey. xoxo

Molly said...

BALLS.

Mr. X said...

Dear Susannah,

I just e-mailed you some resources to consider, if you're so inclined.

I'm not a Doctor, but due to some health issues I've been working on for over a year, I've had to go outside of the "standard of care," in order to get answers and assistance.

For me, this meant Functional Medicine (www.functionalmedicine.org), Integrative Medicine (www.acam.org), AND my "conventional" Doctor. I think all healing disciplines have a place.

As much as possible, try to be in your wellness, rather than your diagnosis. I know that's easier said than done, but please keep that in mind.

Lots of love to you and your family.

Mr. X

Anonymous said...

Well for fucks' sake, now you've destroyed my theory. I figured if I worried about every little possible thing-for me, my kids, etc then either it wouldn't happen or I would be prepared.

Now I know it's just dumb luck.

Thank you for coming out, but more importantly, thank you for keeping it real. Nothing better than balls.

Heidi said...

It was May 2011 when a neurologist said the same thing to me. "Mild" my ass.

My brain froze a few sentences into your post. Need to settle back, re-read and take it all in.

In the meantime my (scattered) thoughts are with you.

Zakary said...

Fuck. Balls.

Love, light, and all the hugs.

Rebecca, Old Coworker said...

Balls, Susannah. Big, strong, powerful, brilliant, hairy balls!

Buff said...

FUCK!...Sometime that is the only word that fits the bill...fuck,fuck, fuck! After the year that you have had, even though it may not always feel like it, you have grown stronger in spirit, heart & humor. I pray that those amazing qualities in you, and the support of your family, friends, & blog followers carry you through the coming year.

Anonymous said...

I have a friend who was diagnosed with "mild" MS 30 years ago. There are some mild problems associated with it, but she is better off than others. Good nutrition is a major factor in MS. There is a female M.D. in Austria who has MS and practices what she preaches.She was a vivid advocate for eating the right products that aids MS sufferer. I am looking for info on her. Good luck and my fingers are crossed that your treatment is successful.

Anonymous said...

It's me again - the last anonymous :-)
Instead of Isreal, how about Canada?
It seems Canada has the highest incidences of MS. Read for yourself
http://www.overcomingmultiplesclerosis.org/Community/Forum/viewtopic.php?f=10&t=3718

Petunia Face said...

Canada only accepts Canadian patients for HSCT. Same with the Nordic countries. US, Italy and Germany require patients to fail disease modifying drugs before they will accept you, which means I would have to take at least 2 drugs and still progress which takes at least a year. HSCT is most effective when you have no disability, so I want to do it ASAP. Russia has a wait list until 2017 after 60 Minutes Australia featured a story of a woman stopping her MS with treatment there. So Israel it is! (Plus the doctor there is the one who pioneered the treatment; his work has been published in over 500 peer-reviewed medical journals.)

I cannot thank you all enough for your kind comments and donations. Today has been a good day:)

Jules said...

You can do this.

xoxo
J

A Perfect Gray said...

had to come back several times before I could manage a comment.

praying for you and your family.

balls.

donna

Kelly said...

Long time reader, been thinking of you. No words, except, yeah, FUCK. And, Fuck no. And also, Why? (The worst question, the one that never has an answer.) I'm so sorry. And yet hopeful, too.

kacey2004 said...

First of all i'm not going to freak out about this because your going to be o.k.,because there is no other alternative,you have to be o.k.So that's that.Secondly,I propose your theme song for this whole period of conquering MS to be AC/DC's "Big Balls."Because that's what you have for being so strong and such a warrior
princess during this whole crazy,heartbreaking,difficult journey you've been on the past few years.You are so brave and so beautiful and your life has such meaning and purpose to so many you have only yet begun to live and inspire.Thirdly,I have a friend who has MS,shes had it for about 25 years and is now in her late 50's.She takes her medicine and has very little symptoms.In fact if you didn't know she had MS you wouldn't know it.But i'm sure you have read enough to know that being diagnosed doesn't mean you have to accept that you have to be or live any certain way because of it.There are no absolutes or finite's and you are definitely going to be an exception.Finally,I think you should write a book about all of this,your life,your journey,everything that happens over there in Tel Aviv,your recovery and your release from MS.I think it will be amazing and uplifting and inspiring as you always are and always will be.Hugs,Love and Healing Light and Energy to you,Keely

Anonymous said...

Thank you for sharing and for inviting us to participate in your journey toward better health. I wanted to share a link to a friend here in MN who is a political reporter on public TV who last week won an Emmy for her reporting of her diagnosis of MS. She is a hon and I love her. She is being treated at the Mayo. Her name is Mary Lahammer. http://www.mnvideovault.org/index.php?id=24736&select_index=5&popup=yes#5