Saturday, May 16, 2009

During Surgery - Kay Quinn's Tweets/KSDK Cover Stroy

Kay Quinn Twittered in the Observation Room next to my surgical room @ Barnes Hospital

Kay Quinn from Channel Five here in St. Louis was there during my surgery - and Twittering the whole time! It was amazing to be able to read the tweets after surgery... which I did two days later. Craig and my family really appreciated the opportunity to get real time information on what was going on - as did my friends and coworkers! It saved Craig a lot of phone calls that day :) Kay is incredible and was very professional.... as well as respectful of my family. The Twittering was part of a Cover Story Channel Five did that can be seen by clicking here. It turned out great! Thank you, Kay! And note to the cranky quy that left a comment on the story -- I DO NOT twitter at work! So there!

Kay Quinn Twitter transcript (Taken from the Barnes Story.... which was taken from the founder of's personal blog)

Good morning from the second floor, West pavilion at Barnes-Jewish Hospital!
I'm in the IMRI, room 217, and Erin is on the operating table.

Everything looks great! I'm going to spend the next few hours sending Twitter messages from the O.R., reporting on Erin Kelley's neurosurgery.

As we get started, let me say that out of respect for Erin and her family, should something unplanned occur, I will stop my Tweets.

Erin has Cushing's disease, which is an endocrine disorder that means her body produces too much cortisol.

These high cortisol levels in the blood can cause a host of unpleasant symptoms, from weight gain to excessive sweating to fertility trouble

Erin's Cushing's disease has been traced to a tiny tumor on her pituitary gland.

She's having that tumor removed this morning. The hope is, the removal of the tumor will reduce or eliminate her symptoms

Erin's been mostly troubled by the excessive weight gain. She also gets sick a lot and is tired too much of the time.

Here's what I'm seeing now: Erin's draped on table, and until just a few seconds ago, her face was exposed.

She has fiducials all over her face. They allow doctors to use an MRI to get a 3-D GPS of her brain.

These little markers allow surgeons to locate her tumor exactly. The tumor is so small, it can't be seen on regular imaging.

Erin's face is covered now. Only her nose exposed. Surgeons will go in through her right nostril, through the spenoid sinus to pituitary.

Using an endoscope, they'll travel through this "tunnel" in the nose and sinus, right to the left side of her pituitary. That's the side making too much cortisol.

The tumor is called a microadenoma.

Sorry...sphenoid is correct spelling of the sinus. I'll have to brush up on my medical terminology. Sorry for the other typos.

Surgeons are now starting to insert the endoscope through the nose to access the pituitary. This process should take 30 mins.

All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.
I just spoke with Dr. Ralph Dacey, the neurosurgeon who will remove the tumor. He says all is going well.

He also told me, what makes this operation so different from others of its kind is the MRI machine that is located right in the room.

There are only 7 or 8 hospitals in the country with this kind of MRI capability.

The advantage is that surgeons can ensure they've removed all they need in one operation.
Without this intraoperative MRI, Erin might have had to come back for a second operation if there was any tumor left behind.

Dr. Richard Chole is the otolaryngologist working on acessing the pituitary right now. Still dark in the OR.

Dr. Jim Johnston is the chief resident helping coach me through this.

He says it's dark so surgeons can see the monitors better. It helps him place the endoscope, as they make their way back to the sinus.

No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.

He says the residents usually hook up and i-pod and force him to listen to U2.... Sorry again for the typos.

Dr. Dacey says not a lot of drama in the OR. Nurses and support staff are very professional. Not like TV show ER.

Dr. Dacey tells me the whole operation should take three-and-a-half hours.

Going through the nose is a new approach. Surgeons used to go up under the lip.

Dr. Dacey says this technique means less post-op pain/scars

Pituitary Gland Fact: 1 to 3% of adult population has a pituitary tumor. Very common. Most have no symptoms

Dr. Chole is in the sphenoid sinus now, getting closer to pituitary.

He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid.

Pituitary Gland Fact: While tumors in the pituitary are common, only a very small number of people will develop Cushing's disease.

Amazing images on the monitor in the OR: we can see images being sent back by the small camera in Erin's sinus.

We can see Dr. Chole removing tissue as he goes deeper into the sinus.

I look very attractive in my scrubs and surgical bonnet. I'll send a photo later. Cell phones don't work in here.

For the squeamish: This is not bloody at all. Very clean looking

I've got a Newschannel Five photographer by my side today. Joe Young is the best in the business. He's been at 5 for 25 years.

We'll shoot the operation and my Tweets and show the story sometime in May.

I'm making this sound easy, but Dr. Chole has to be very precise as he tunnels his way to the pituitary

The carotid arteries run along either side of his "tunnel," so he can't veer off course at all.

We've reached the bone that separates the sinus from the pituitary. Soon, Dr. Dacey will cut a window in that bone to get to the pituitary.

All is well, all is going as planned.

Big thanks to Dr. Jim Johnston. He's my John Madden...providing important medical background.

Barnes-Jewish, thanks for making this possible. This is an incredible opportunity

@kayquinn The tweets are great! Why the formal story delay until May? Are you waiting to add Erin's input post surgery?

I'll turn it into a longer story. Our Cover Stories are three or more minutes, so I'll get extra time to put it together

Surgeons never actually reach the brain, but they're very close. The pituitary is right behind the sinus at the base of the brain

Dr. Chole has done his work. Now Dr. Dacey will take over.

First up, he'll make the window in the bone that's between sinus and pituitary

Then, he'll be able to go into the gland itself

Just to recap if you've just logged on: I'm reporting via Twitter from a Barnes-Jewish Hospital OR Erin Kelley is having a tumor removed from her pituitary gland, a small gland behind the nasal sinus, at the base of the brain

She's hoping the operation will control or eliminate symptoms of her Cushing's disease

Temperature is very cool in here Dr.Dacey is now working at the base of the skull. Very vascular area. Seeing a little more blood, which is normal

Just got an update from Dr. Chole, the otolaryngologist. He says Erin's tissue is more fragile because of her disease

They're going slower than normal because of this. The tissue bleeds more easily, so they're moving cautiously

Dr. Dacey is operating now. He's through the bone and didn't have to drill to get through. This is good. Less traumatic for Erin

Dr. Dacey is at the dura, the covering of the brain that also encompasses the pituitary.
He'll go through that now to gland

Cushing's is named after Harvey Cushing, the father of modern neurosugeron.

He did basic research on role of pituitary, how to treat it

@kayquinn Wow, the detail on the surgery is amazing. Are you in some kind of sterilized area to do the tweets??

@ahawkcollinger I'm not in a sterile area. I'm in a control room with a window into the OR

@ahawkcollinger But I do have scrubs and a surgical bonnet on! Adorable blue color

Hello to Erin's family on the 10th floor. Dr. Chole just came by to tell me where you are. All is well! Hope to catch up with you later

Dr. Dacey is putting a needle into the area where the pituitary is now to make sure it's the gland he's reached and not a blood vessel

Dr. D about to make an incision in the dura to get to the gland

Joe Young took the camera back in the OR to get more shots of the operation. He's also been shooting me in the observation room on Twitter l

lama_3234I wonder what it would be like to be family of @erinmariekelley and watching the tweets of @kayquinn - nervous or relieving?

@llama_3234 Good question! Apparently, they can read our Tweets, but the hospital's system has blocked them from sending messages out.Dr. Chole says they're anxious to send messages out but can't.

Dr. D has opened up the dura and is trying to visualize the pituitary gland
Apparently the gland is an orange-brownish colored gland, shaped like a Hershey's kiss. Very firm. (dr. j's description. love it!)

Dr. D is using a blunt instrument to feel around the pituitary now for any unusual tissue

The hope is that by taking the left side of the pituitary, disease symptoms will go away.

Remaining right side should function normally

Dr. Dacey says he's in the pituitary and can see a milk nodule on the left hand side that he's removed and sent off to pathology

Now, he's going to remove the left portion of the gland This is great news! Dr. D got what he was looking for!

Now waiting for lab to call back with a preliminary report on what that nodule was. Takes five days for the full report on it tho

There has been some bleeding, but Dr. Jim tells me its completely normal. Dr. D's been working around it all, which has taken some time

Not planning to do intraoperative MRI because her pre-op scans were normal

28 year old Erin Kelley, mother and wife, is having the left part of her pituitary removed to alleviate symptoms of her Cushing's

She had a tumor or nodule on it.

The neurosurgeon just removed it and sent it to the lab

All happening on a second-floor operating room at Barnes-Jewish Hospital in St.Louis

Dr. Jim tells me the pituitary sits in a "web of veins" and that's why there can be bleeding during surgery It's very normal.

Also, because of all of the excess cortisol in Erin's blood stream, those veins have become very fragile

A lot of the left side of the gland is out now

Dr. D now looking at the bone fragments Dr. Chole took out. Looking at closing the "window" or hole already!

Left side of the gland completely out. Peeled it off. Tofu-like substance

Now, surgeons will take a little fat pad from the abdomen to also use to seal the hole

Dr. D placing gel foam used to minimize bleeding. This is all part of the process of finishing the operation

I'll be away from the computer for several minutes. Going to grab a quick interview. I'll be back to wrap it all up.

Awesome experience! Erin's surgery is complete! She'll leave any moment for the recovery room
Thanks to all who made this possible: Erin, BJ Hospital, KSDK. It was an incredible experience!

Funny to see all the lights on in the OR. It was dark for 99% of the operation

I'll keep you posted on when you can watch the story on Newschannel 5!

@kayquinn A lot of us "Cushies" are out of area. Will the story be online?

@cushings It will be on-line the day it airs. I'll let you know!

The Night Before Surgery and the Morning of....

Hot, Right?

Pre Surgery MRI - April 26, 2009

I have to admit. The day before this I was a mess. A real mess. Never again will I roll my eyes when someone says they are having an anxiety attack. Now that I have felt it -- wow. Terrible. But on Sunday morning I woke up very peaceful.... and ready to face everything that was to come starting Sunday night with the pre-surgery MRI.

Jrue went to his Dad's house at about 3 - we had to get to Barnes for the pre surgery MRI at 4. The neurologist that was there put these fun little circular things on my forehead before I went into MRI. He explained that they were to map for the surgery. They did the MRI. Note to self - they mean it when they say NO METAL. I had a tiny tiny bit on my hair rubber band. They had to stop the MRI and start over. Woops. I was very uncomfortable with the scan (they scare me now) and it had to be redone after they finished because there was too much movement.

Still not exactly sure what the round things on my head were about. But it was interesting to walk around with them on my face for the rest of the night. Craig and I had a great last night before temporary misery... I will spare everyone the details. lol.

Who shows up late for their Brain Surgery?! and a kiss from the Hubby! - April 27, 2009

Craig and I woke up in the morning at about 6 to arrive at Barnes around 7:30 am to check in. We were pulling together last minute things when Craig's phone rang around 6:45 - apparently we were supposed to BE THERE by 6am and the surgery was supposed to START at 7:30! It is amazing how quickly you can move when you need to. My mom was going to meet us at the house at 7:00 and follow us to the hospital... so I called her and let her know what was up and we were on our way. We were at Barnes around 7:25 and whisked through the registration process and pre-testing (they wanted to get a urinalysis and a few blood tests) I had a UTI that was treated over the weekend that they wanted to check if that was still there. We were upstairs and I was in a gown and on the bed in pre-surgery by 7:45. Doctors came in and introduced themselves... nurses were sticking iv's in me and checking BP... it all went so fast! I was really just worried about saying "I love you" to my mom and sisters that were there before I went back..... Craig went to find them and got them back there on time. Gotta love that man!

It was time to head into surgery (about 8:00) and I got one last kiss from Craig. That is the last thing I remember... and if you ask me - that is not such a bad thing.

I am back! Kind of! And let's start Weaning!

Jrue on the kiddie roller coaster at Spirit Fest

I have the mental energy to get back to this blog! That is improvement if you ask me. Today was a great day.... and a long one. Jrue and Tommy were supposed to have their first baseball games of the season today - but they got rained out for the second week in a row. Lindbergh's Spirit Fest (the public school version of the catholic School Picnic) was today. We went (yeah!) and made it for about 3 hours before everyone had enough. Nonna and Papa (Craig's parents) met us up for lunch, and Bre, Morgan, Maggie and TJ came up for a while. It was so nice to get out for a while. I came home and went into a coma-like state for about an hour and feel much better now.

Have been feeling good off and on lately. It is wierd. Literally half of the day I will feel amazing and the other half it is like the worst flu ever. When the Channel Five story came out it was kind of mortifying how "puffy" my face looked..... so I decided that it would be a good idea to not take my Prednisone the other day. Not a good plan!!!!! It took a day - but for about 24 hours it was the worst kind of awful. There was an hour or so where I thought that we were headed to the hospital. Lesson Learned! Apparently the side effects will just have to be tolerated for now.

One really really fun thing going on right now is sweat. Out of bed for more than an hour I start profusely sweating - it drenches my scalp and drips off my face. A call to my Endo and I found out this was probably a sign of too much Prednisone. She called in 90 (1 mg) tablets and I am going down from 10 mg per day to 8 mg per day as of this morning. So far so good the sweat was not as bad today and the day was really good.... the Spirit Fest might have been pushing it a bit too much... but it was so fun to see the boys on the rides. I used to LOVE the school picnic when we were younger.

Friday, May 1, 2009

Home Sweet Home!

I was getting on here to post... but gotta say I am pretty whooped... So I am going to sign off. Just wanted to say that I am home and this whole experience was pretty amazing. I feel incredible... can tell that this worked... and that is a good thing. It is going to be a long next couple of weeks as my body adjusts. There are a few hours of real ick each day....

Thanks for all of the support!!! Everyone has been amazing.

Here is a story about the surgery and a transcript of Kay Quinn's twitters from Barnes.

Saturday, April 18, 2009

I. Can. Sleep. :)

Good drugs. Not sure what they are --- but I am in lala land about 20 minutes after taking them and that makes me a much happier camper!! Poor Craig is being so patient. All I do is crab and sleep and work. This will be over soon!!

I am really trying to keep up on this blog thing - but it really feels a little odd. I am talking to outer space. Getting a little bit anxious about the surgery and I got back on and did a little bit of "stalking" people that have had surgeries done recently. It was a good reminder why it is important to do. Alicia has been out almost a month and her experience has been awful - but the details are good to know. Thank you Alicia!! I will be praying that everything calms down a bit and she can get to recovering. I keep making Craig read these so he knows who to yell at and what about. :)

Every day I am more and more grateful that I decided to work with doctors HERE as opposed to going to one of the doctors in Texas, Boston, etc. It is so comforting to know that if issues like Alicia's pop up -- the same team that operated will be there to help. The doctors and everyone at Barnes have been AMAZING so far!

Work is getting REALLY fun. I hosted a service day today with volunteers from one of our support churches. They were INCREDIBLE. I have never seen one group of people get so much done in a half of a day. I think I ran up and down the 5 flights of stairs around 100 times today. Pretty pooped. One more week of work left and a TON to do.

My main goal this weekend is NOT to get a head cold or infection. They will have to cancel the surgery if that happens.

I will post more about the pre op appointments last week. For now --- I have a quiet house and a big comfy bed that is calling my name! Oh and Happy Birthday Weekend - Mom and Pat (brother)! We are BBQing here for them tomorrow!

My Boys :)
Jrue, Craig and Tommy

Wednesday, April 8, 2009


I am trying REALLY hard to stay positive.... but today I am pretty darn fed up!!

I CANT SLEEP at night. It is NUTS. If I can manage to get to sleep by like 10 -- I am out like a light and then at 12:30 - WIDE awake. Then around 5 am my body decides it is finally tired.... only to have to get up for work around 7:30.

I have been fine until today but something must be going on with my cortisol worse than usual because I am a freaking MESS. I am on hold with the Endo's office right now to see if they can call in some horse tranquilizers... lol.

That's all I have to report for now. Back to work!

Monday, April 6, 2009

Cushing's Awarness Day - April 8 (info for Media)

Erin Kelley

April 8, 2009
National Cushing’s Disease Awareness Day

I am writing to you as a member of the media to ask that you feature a Cushing’s Awareness item of some sort on your program or in your paper. I was diagnosed with Pituitary Cushing’s Disease (a tumor on your pituitary gland causes your body to overproduce Cortisol – which signals your adrenal glands to overproduce ACTH, putting your body in constant state of Fight-or-Flight) recently and will be having neurosurgery at Barnes Jewish Hospital on April 27, 2009.

Cushing's Disease has several "hallmark" symptoms: unexplained weight gain in the upper body with increased fat around the neck and face (moon face); a hump at the nape of the neck (buffalo hump); facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, insulin resistance, infertility, hirsutism, male-patterned balding and steroid-induced acne. I have most of the symptoms – but there is no “typical” Cushing’s patient. You can have one or all.

The disease is rare and very difficult to diagnose, and it is often missed. My personal experience goes back almost 11 years. From Senior year of High School through the summer of my freshman year of college- I began to gain a lot of weight – in one year going from a size 6-8 to a size 26-28 – and gaining over 100 pounds. Stretch marks covered my breasts, abdomen, thighs, butt and arms. All of the marks were a dark purple shade – some of them thick enough to place a finger in.

I had always been active – I ran track and cross country for my high school - and swam competitively year round for a USS team and a summer league. I finished a half marathon. Track and Cross Country got more difficult – I was always exhausted, was diagnosed with chronic mono and had walking phmenoia a few times Junior and Senior year –and developed severe stress fractures. I joined a rugby team a few years ago and played as tighthead prop – that was too much. I have always been active – playing random games of tennis – joining teams for sand volleyball and softball.

In 1999 I graduated and in 2000 I went to see a new primary care physician with complaints of thirst, not having menstrual cycles, not sleeping, exhaustion, constant hunger, high blood pressure, and inability to concentrate. He ordered tests which showed that I was not diabetic and sent me to an endocrinologist – who eventually diagnosed Poly Cystic Ovarian Syndrome. I was put on medication for Insulin Resistance, on birth control to level out my hormones, on medication to force a period, blood pressure medication, and sent to a dietitian who insisted I was consuming almost 4,000 calories a day (which I was not coming even halfway close to). A psychiatrist diagnosed me with ADHD and placed me on Adderall.

For the next 10 years I was in and out of the doctor’s office with one weird complaint after another. I am always sick. I have had doctors suggest or diagnose Lupus, Liver Disease, High Blood Pressure, GERD, Lymphoma, ADHD, PCOS, Migraines, Obstructive Sleep Apnea – the list goes on – there was always a theory and always a test or a treatment. Many suggested that I was just plain fat and needed to work out more and eat less. Chest infections, sinus infections, skin issues (bug bites/poison ivy, etc) that took months to heal and scar badly, major dental problems, problems sleeping, strep throat 3x per year or more, major headaches, no periods, itchy acne that comes and goes on my jawline, odd allergies that come and go, and the final straws in my barrel - MRSA staph infection two times in two months – first on my lower leg and then under my rear, and liver enzymes ALT and AST both near 400.

Lots of medications treated all of these symptoms – but no one was able to explain what was causing them.

I went in for a check up and said that I felt that something was wrong. I was 27 at the time – and felt like I was 98.

One 24 hour urine test (cortisol) and I had my answer – it was 2x the normal high level and according to everything I googled – was diagnostic of Cushing’s Disease. What I read told me that this could be the explanation for all of my symptoms. I remember a fellow mentioning that he thought I had Cushing’s Disease when I went to an Endo the first time – but didn’t hear anything more after that. I came to the site and sat for hours and hours reading MY story on other women’s blogs and in the forums. I now knew what to do/who to see/what to ask and how to seek a diagnosis. Cushing’s disease was featured on Mystery Diagnosis, House – I knew that this was not normal and in fact a very rare disorder. If I didn’t have Cushing’s Disease – so be it. But If I did – I wanted it diagnosed and cured as soon as possible!

My PCP was not convinced this was the issue and I was referred to a Gastroenterologist who proceeded to do a liver biopsy, Endoscopy, flex sig, and many other blood tests. I went ahead and sent my test results and story to an Endo who was very familiar with Cushing’s who encouraged me to schedule an appointment with an Endo here in St. Louis. I went ahead and made the appointment and referred myself.

Fast forward through many, many procedures, tests, visits, copays, a few amazing doctors and long sleepless nights. Upon receiving the results from an IPSS (inferior petrosal sinus sampling) I was finally scheduled for neurosurgery done by an ENT and Neurosurgeon (they will go through my nose to reach the pituitary gland) to remove a micro adenoma (tumor) and whatever other tissue is causing the overproduction of cortisol in my system. The surgery is April 27th. 60% of Cushing’s cases are cured by this first surgery alone. My neuro has told me that if the surgery is not a cure: next comes Gamma Knife radiation and then surgery to remove both adrenal glands.

I am praying for a cure on April 27th – and that someone might hear this story or read this article – see themselves and their struggles in it – and demand testing. I don’t know where I would be in 10 years if I hadn’t ---- thankfully I don’t have to know.


My name is Erin Kelley. I am 28 years old and live in Sunset Hills with my husband, 4 year old son and 8 year old stepson. I work in fundraising for a local non profit organization.

For more information on Cushing’s Disease please visit:

Cushing’s Help Organization

National Endocrine and Metabolic Diseases Information Service

Mayo Clinic

Tuesday, March 31, 2009

I miss my Husband! And what a good Sissy!

What a couple of days!!

Craig went to Florida yesterday with his big sister Terri to visit their parents for a couple of days and road-trip back with one of their cars tomorrow. It is so cool that they are able to get the time alone without kids and spouses...... Craig thinks it might have been 17 years ago or so since the four of them have been alone together. They got in mid afternoon last night and were able to go to Sana bell Island (a spot where they vacationed as kids) with their parents and there is not a photo of Craig on the wall at someplace called Cheeburger-Cheeburger (did I get that right?) for eating a One-Pound hamburger... Craig sounds like he is having a blast. How cool!

BUT I MISS MY HUSBAND!! :) It is amazing how much I have started to take for granted having him around. It is 11:30 at night and noises in the house are scaring me.... the bed seems too big... I didn't have a clue whether to watch House, Law and Order, One Tree Hill or Law and Order on the DVR because it doesn't seem right to watch any of them without him!

Monday was also had the second round of root canal (one on the left top and one on the right top) visits to my dentist last night. I have had so many horrible dental problems (another side effect of Cushing's) and they have all hurt so badly that I am TERRIFIED of the dentist. This is my first experience with a sedation dentist and so far so good. They gave me two pills to take an hour before the appointment on an empty stomach and it knocks me out for the visit. Since Craig was gone ---- my wonderful, dependable, overall amazing sister Maggey stepped in for Erin-Doctor Visit Duty. She came to work at about 3 and sat and helped me out with some things for a 5k that I am planning (more on this later) and even took a big tub to work on while she was waiting. We went by a vendor to pick up some DVD's that I had duplicated and the meds started to kick in. Maggey took over driving and we headed to the dentist. Thank god for the GPS because I don't think I could have found my house at that point! In fact -- I made her stop at a fruit stand in Webster Groves and buy apples, grapes and kiwi (I take it as a good sign that my subconscious wants fruit) and didn't even remember this until Maggey told me today and saw the bag of fruit in the fridge myself. Sheesh

Into the dentist where they were not able to finish one of the root canals because the infection in that tooth was still too bad to go forward with the procedure (same problem last time I was in). They put the crown on the other and we headed to Walgreens to get my painkiller prescription filled --- and buy Easter Candy because apparently I needed that as well (now that sounds more like me!). Maggey must have handled me well because we got back in the car and went to get mashed potatoes. Unfortunately the permanent crown came out right away!!!!!!!! I woke up all comfy and tucked in. What a great sissy!!! It is so nice to have such great people that you can rely on. PS - If you got a drugged - Erin phone call.... sorry!! And Maggey -- I will just forget the part about you texting photos of me splayed out asleep in the waiting room of the dentist office......

I was able to call the dentist this morning and from what I could tell them over the phone it sounds like it will need a bridge now. So now I have to work in another regular dentist appointment so they can look at it and come up with a treatment plan. AND I still have to go back to finish the other root canal. It never ends. Apparently I love doctor/dentist appointments.

It will be nice when the day comes that a trip to the dentist only involves cleaning or a simple cavity fill. Or a trip to the doctor will only be to regulate my thyroid or whatever other follow up has to happen after my surgery. Bring it on!

But for now there is a lot to be thankful for: a job that is flexible, coworkers that are understanding and VERY supportive, an amazing family and an eye on the prize.

Maggey and her boys (Tommy, Colin, Jrue and the neighbor boys)

Sunday, March 29, 2009

Adversity and Football Movies

Craig and I had the RARE opportunity to have the morning and afternoon (lunch with my family in between) to ourselves... we snuggled and watched a movie! With not a kid around to make us stop! We had rented "The Express" - which turned out to be a great football movie about the first African American football layer to win the Heisman. Great Flick. See it if you can.

I have a running joke - all good movies include three elements.
  1. A "Coach" or authority figure is overthrown - and the team wins (or individual)

  2. Someone overcomes adversity of some kind

  3. The guy gets the girl or the girl gets the guy

I love this because of #2. Adversity is described by the American dictionary as: NOUN: 1. A state of hardship or affliction; misfortune. We all face some type of adversity - daily, weekly - minute to minute. Watching normal humans look this kind of challenge in the eye and succeed --- now THAT is inspiring.

I searched for quotes (I am a quote junkie) on adversity and found one that spoke to me today:

"Nothing is more desirable than to be released from an affliction, but nothing is more frightening than to be divested of a crutch." - James Baldwin

I was on the way to a Rugby match one weekend -- years ago and long before I really thought there was something wrong with me that a lot of time in the gym couldn't fix --- and we were all talking about weight issues -- I was by far the heaviest girl in the car (and I believe on our team) -- and kept saying something to the effect of "God it would be great to lose this weight and be done with it." One of the girls (nicknamed Slim if that helps you get a mental picture of her 5 foot nothing 100 and nothing frame against my 5 foot 7 and I am not saying how much physique) looked at me and said ---- "Erin, what would be bad about you losing the weight?" That sure shut me up. NOTHING. In fact -- I believe EVERYTHING in my life would be made better by a healthier, thinner me. And believe me -- I have great self esteem -- I love me. In fact -- I see photos of myself and it is so NOT what I see when I look in the mirror. I kind of wonder what is wrong with our darn camera sometimes...

I wonder what I will be without the crutch of my weight/health issues/Cushing's Disease - I wonder what I will do when I can go to the gym - I can work out for hours like I did in High School. I wonder what it will be like to have an event/wedding/girls night out coming up and not put on a hoody because there is just nothing that fits. I wonder what it will be like to plan things and be 99% sure that I will not be sick or tired or sick and tired of being sick and tired. I wonder what it will be like to be there for my husband like he is for me.

I CAN'T WAIT TO FIND OUT. I hope that I am not so used to the crutch that I won't rise to the occasion and become the "me that I want to be."

Saturday, March 28, 2009

Day One in Blogsville - What is Cushing's Disease?

Here we go!! I have joined the ranks of the online bloggers... who knew? For those of you who know me well -- I have always been outgoing and am not shy about sharing.... but things going on in this season of my life have made me stubborn (more than usual), have taken all control out of my hands and have brought me to the realization that life really is a constant journey. Nothing seems to stay the same or be predictable..... and lately I struggle with this concept. I struggle with how to let everyone know what is going on without sounding like a 95 year old women constantly complaining about a hip replacement. I am here to deal with the day to day in a healthy (and positive) way -- and to share what is going on with all of you. Craig (my amazing husband) has offered to keep this up to date when I cannot after my surgery.

I hope that someone working through their diagnosis finds this blog useful -- like I have found comfort in the information all over the web that others took the time to share.

What is Cushing's Disease?

I was recently diagnosed with something called Cushing's disease. It is an extremely rare disease (or orphan disease - defined by the National Institute for Health's Office of Rare Disease Research as occurring in under 200,000 affected individuals in the United States). Leave it to me - I like to be unique) Simply: I have a small benign tumor on the left side of my pituitary gland that is causing the pituitary to constantly release an excessive amount of ACTH. The overabundant amount of ACTH then signals my adrenal glands to over produce Cortisol. This results in Hypercortisolism, basically the same reaction that your body has when you are in a sudden seriously stressful situation (skydiving, a car crash..) commonly known as "fight or flight." Blood sugar levels are increased, blood pressure is increased, and the body is signaled to suppress it's immune system. My body is in this condition 24/7. Great when your body needs to kick into gear to deal with that sudden seriously stressful situation. Not great when you are trying to sleep.

Broken down Barney-style: It is like I have been taking WAY TOO MUCH prednisone or steroid for a VERY long time (ten years is the doctors best guess) and my body is angry about it. If you or anyone you know has ever had to go on steroids to treat anything - you are aware of the short term symptoms: irritability, increased hunger, difficulty sleeping, weight gain, water retention, and it is pretty easy to get sick from a bacterial infection.

Normal doses of Cortisol - in the steroid family glucochorticoids - (or the chemical reproduction: hydrocortisone) do great things for your body: reduces inflammation, makes sure needed sodium that your body creates is not lost, helps the liver remove toxins. In high doses these "side effects" turn problematic, and eventually are fatal.

Cushing's Disease has several "hallmark" symptoms: unexplained weight gain in the upper body with increased fat around the neck and face (moon face); a hump at the nape of the neck (buffalo hump); facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, insulin resistance, infertility, hirsutism, male-patterned balding and steroid-induced acne.

Luckily I have gotten away with not having acne, facial hair and have plenty of hair on my head. In fact - I would like to know how I can donate some, ha! :) I don't believe I have depression of any kind and am generally free of anxiety (until lately).

My list of "symptoms" that can be traced back to Cushing's Disease are amazing. For starters - those of you that knew me in high school remember my pretty sudden weight gain at the end of senior year and into the first year of college. I have spent the last ten years of my life in and out of the doctors office dealing with stress fractures; chronic mono; sinus infections; strep; chest infections; serious dental issues (almost all of my teeth are root canalled); poison ivy that lasts forever; bug bites that fester and wont go away; skin problems that spread and scar; difficulty sleeping (a sleep test at Wash U concluded that I wake up between 17 and 70 times per hour -- leaving me with very little REM sleep); constant urination; insulin resistance; lack of periods; 2 instances of MRSA Staph infection; intolerance to heat or cold; seriously high blood pressure.... on and on.

For ten years doctors have been treating my symptoms. And saying that they are unrelated.

It is a relief to know that there is a CAUSE for all of this. And it is a huge relief to know that there is also a CURE for all of this.

I have an amazing team of specialists at Barnes Jewish Hospital here in St. Louis who have decided the course of treatment will be a form of brain surgery done through the nose. An ENT (ear, nose and throat) Surgeon will go in, drill through some bone and get to where the pituitary gland is located at the base of the brain. My Neurosurgeon will then take over, "bread slice" my pituitary gland so that he can visualize all areas, remove the tumor and any other cells that look problematic, plug the layer that protects the brain and keeps all of the CSF (brain/spinal fluid) in. More on all of this later -- but this surgery is happening April 27th. 60 - 80% of the time one surgery is a cure. If it doesn't work (and there are an uncomfortable number of variables) - a second surgery, gamma knife radiation, medication and finally removal of both adrenal glands occur. I have had the opportunity to speak with many women and one man who have been through treatment and results are all over the board..... the majority being "first times a charm."
I am sticking with surgery #1 being a cure and April 27th being the first day of the rest of my life.