Friday, May 4, 2012

Day 4: Around the Cushie World in 30 days: Ashley's Pituitary Surgery

Today, I bring to you a profile of my friend Ashley R. She does not blog, but she should.  Ashley and I have been writing each for many many months online.  I have used everything in my arsenal of knowledge to guide her, and she has been an excellent student.  I take my role as Cushie advisor very seriously, and Ashley took my advice and made her own journey shorter as a result. I am very proud of her diligence and persistence, despite being very ill.

I finally met Ashley R. in Los Angeles this past January 2012.  When she saw our shared doctor, Dr. Friedman, I drove her to the appointment.  

Beyond what I have taught her, Ashley R. has been a wonderful teacher to me.  She has become one of many Cushing's patients for whom I have deep admiration.  Most importantly, Ashley R. and I have had many discussions, including how to enhance our outlook in order to create our new destiny without Cushing's and despite Cushing's. We are both committed to moving on to powerful and healthy lives that we have only because of the Cushing's.  For this and many other reasons, I am proud to call Ashley R. my friend.  I find her so compelling that I asked her permission to share her story here for you.  

Ashley R. is having surgery in Houston at the MD Anderson Cancer Center on Friday, May 4 at 8 am.  Please keep her in your thoughts and prayers.


"You have a brain tumor? What the heck is Cushing's Disease?"
by Ashley R. on Thursday, May 3, 2012 at 4:20am ·

I've spent much of the last year being quiet about the changes in my body and mind. Yes, there was chronic illness and debilitating/disfiguring symptoms, but I never really wanted to take ownership of what was going on - it always seemed like an invader to my body. I certainly didn't want to worry anyone unnecessarily and I definitely didn't want to jeopardize any professional contacts by littering my Facebook profile with too much medical information. For the most part, I tried to keep as normal of a schedule as possible.

... but I knew things were changed. I knew that I couldn't keep up appearances for long... so I (as gracefully as I could), withdrew from everything but what it took to survive. If you were a part of my life that didn't make the cut, you likely saw my involvement dwindle. I promise, I wasn't trying to hide. I was trying to survive. I am fighting so I can come back to full involvement. I promise, I'm almost there.

So here I am, about a year and a half out from the initial start of this mess, and I am ready to put pen to paper and explain what happened. Before I start, I need to be laser clear on a few things:

1. I am so grateful for the healing that this journey has brought to my life. This process flipped my world upside down... and in the process, forced me to confront things that I had avoided. 

2. I am confident that this is already cured and I am already healed ... my body is not broken, and this was no mistake. I don't write this for sympathy -- I've already grieved for what I thought I had lost. I write this story today from a place of gratitude... gratitude for my friends and family who have supported me through this and gratitude that I was trusted with this story. My prayer is that I say what needs to be said and that there be no mistaking that Jesus has been in control of the outcome from the beginning. I am at peace with what happened. 

Understanding that, let's start at the present.

Today, I lay in bed in a Houston hotel awaiting my turn to see one of the top neurosurgeons in the country. Tomorrow, I will undergo brain surgery to remove a tumor from my pituitary gland. Today, I pray, is the last day Cushing's Disease is allowed to be in my body.

What is Cushing's Disease?

Ever heard of the stress hormone, cortisol? Cushing's Disease is simply (ha!) an overproduction of cortisol in the body, usually caused by a tumor that overproduces the "give us more cortisol" hormone (ACTH).

Picture for a moment a time in your life when you experienced EXTREME STRESS. Perhaps you went through a trauma of some kind...perhaps you had a point in time where you had too much "critical" stuff to do and not enough time. Picture how your body felt - your muscles twitching between super strong and super goo, your heart beating fast, your head going from clear to mush... your appetite dropping only to hours later leave you ravenous... your body switching to survival mode with only one objective: run away from the tiger before it eats you.

Got it?

Now picture never being able to shut that off.

That, is the only way I can give you a glimpse of what this disease process looks like.

Take a few moments and watch this video - it explains the technical side of things quite well. It is worth the 6 minutes.

How did it happen to me?

I'm not really sure... but as I looked over the patterns in my life, it is entirely possible this is something I've been cycling with since I was a young girl. We started to get suspicious January 2011 when an overwhelming amount of fatigue took over my body and I gained about 30 pounds in 30 days - while dieting, walking 3 miles a day, and regularly practicing EFT to work through the emotional side of things. Something was wrong, something was very, very wrong.

As I scrambled for answers (surely, I had to be doing something wrong), a friend mentioned Cushing's. I scoffed, "now why would I want that? That's not fun."

A few weeks later, Samuel picked me up in San Luis Obispo and drove me to Seattle to be seen and have initial tests run. When the tests came back showing that we were on the right path, the choice was made immediately to move me back to Seattle permanently.

I didn't struggle through doctor after doctor who told me I was crazy. I didn't have the energy for that... I went straight to one of the leading experts on Cushing's Disease. For 8 months, I tested - blood draws, 24 hour urine collections, and saliva tests... Over and over again. Trip after trip to the lab. It was an exhausting and humiliating experience. Scratch that... it was an exhausting and humbling experience.

I tried to stop the process. I tried hard to fight it. When I stopped fighting it, there was a bit of a lull to the process. It made no sense. Throw everything you know about your body out the window. I was gaining weight eating a clean paleo diet and could get the weight gain to stop if I ate crap junk food. It made no sense. None. It still doesn't.

By September, most of the changes in my body had already occurred. I had gained about 150 pounds in a little over 7 months. My waist circumference doubled. My hair fell out. Reddish purple lines striped my arms, shoulders, and chest. Pads of fat seemed to grow both at the back of my neck AND on top of my collarbone. My face COMPLETELY changed. My moods altered and I fought against rage in my body. My skin turned both bright red and orange. Anxiety and paranoia were present daily. 

While I've avoided posting pictures over the last year, I feel like none of these words can quite show the change like this photo can. This my friends, is what the diagnostic process cost me physically. 

end of December 2010   -------------------------     April 2012

Dramatic, eh?  It was only 16 months.

I've tried (sometimes unsuccessfully) to rationally think through these changes. I've tried to keep perspective - that most of these things I felt were caused by the hormones NOT by real threats. In short: I did everything I could to not BLAME this disease process for any of my shortcomings. There were definitely limitations, but I refuse to give in completely and let this disease process take more than it needed to.

We found the tumor in October via MRI. You'd think, with an ever growing mountain of evidence supporting a diagnosis AND a visible tumor, that the doctors would be clamoring to take that puppy out, right? That just wasn't the case.

Midway through November 2011, I learned that my doctor was retiring his practice and moving in to drug research. I never managed an official diagnosis out of him -- the day he left his practice, he had spent 8 months being "highly suspicious" but never committal. Is this a doctor thing or a man thing? Who knows.

my buffalo hump
In January 2012, I flew to California to see another Cushing's specialist. There were several of you who prayed for and helped fund this trip. I am eternally grateful for your generosity.

When I met one of the doctors the first thing he said to me was, "Why hasn't anyone helped you before now? Why did they let you get this sick?" I do not have an answer to that question.

I spent most of February and the early part of March doing one final blitz of testing. In truth, the doctor likely had enough to make the final call, but needed tests that he had ordered to come back positive to do the whole CYA thing. 

Mid March 2012, almost a year to the day of my first appointment to discuss Cushing's Disease, I had a diagnosis: Cyclical Pituitary Cushing's Disease. 

Over the year and a half of progressively getting sicker, I was asked many times why I fought so hard for a particular diagnosis. After all, most people are traumatized when they hear they have a tumor and a life threatening illness. I, on the other hand was relieved.

I have a short answer to this: I needed 100% written proof, verified by a professional, that I did not intentionally do this to myself. I needed that proof for me... and for anyone else that would raise an eyebrow to me.

Sound strange? Sound selfish? Sound a bit ridiculous? Probably.

You see, I grew up an overweight child. I was blamed, from the age of...oh...8 or 9... for my weight problems. I've had so many labels put on me by doctors that refused to look for something other than a sad child who liked chocolate. I needed the diagnosis because I spent decades hating those responsible for my physical and emotional well being. I couldn't put my finger on it... but I never bought what they were saying.

The Cushing's diagnosis gave me the courage to forgive.

The process to get the diagnosis gave me the ability to appreciate and love my body in a way I can't quite explain - though I am going to try later this week. 

Anyway, here's what's next:

I'll have drive by brain surgery through my nose on Friday... then we pray that it is a cure. The surgery is really easy guys - I promise I am going to be ok... I am at one of the best facilities in the world and have one of the top surgeons in the world. He knows this disease inside and out and is going to take good care of me. Yes, please pray for me and for him for the actual surgery... but also keep my family in your prayers... as they are the ones who have to anxiously await the good news. Dad, Kelly, and Sam are here with me... and my sister is back up in WA (worrying no doubt).

Once I return home, I get a new fight on my hands: the "drying out" process (allowing the cortisol soaked tissues to get rid of the excess stored cortisol) and the "waking up" process (where my body starts producing hormones on its own again). They say the cortisol withdrawal is akin to a heroin addict going through withdrawals. Please pray for me. Please come check on me. This process scares me more than anything else.

Then, we rebuild from a place of gratitude. We learn from the process... and we move forward.

I am overwhelmed by the support, prayers, and generosity of those around me. I am overwhelmed at the humility my husband has shown through the whole process (I love you!). I am overwhelmed by the support of my bosses and coworkers - I've never felt more cared about by any other group of women. I am overwhelmed that women I didn't know came to visit me when I first moved back to Seattle and was lonely because no one was coming to see me. I am overwhelmed by the knowledge I've had the privilege of acquiring. I'm overwhelmed by the courage of the women who have gone before me in this fight - the women who took their time to navigate this process and support me every step of the way. I am overwhelmed that you took the time to read this... and mostly, I am overwhelmed that Jesus has been there through it all, going ahead of me, carrying me, and providing what I needed to come out on the other side of this in a much better place than when I went in.

Thank you so much for everything you've done and for the love you've shown to me.

All my love,
Ashley R.