Cushing's So Dumped

Late Yesterday Afternoon

2011-01-07T15:07:00.000-08:00

We had just come in from a long hike in the woods. My kids -- Eli, 6 years, and Micah, almost 4 -- were acting out an elaborate fantasy, pretending they were lost in the woods. In their fairytale world, our house was not actually ours, but instead one we'd stumbled upon in search of food & warmth (a scenario, no doubt, inspired by Goldilocks and three bears, a current bedtime story fave). Upon entering, they walked into the living room and exclaimed: "Wow, they have a TV and a Wii just like at our house!" Next, they made their way over to the kitchen table, spotting their leftover lunch: "They had tortellinis for lunch, just like we did!" And then over to the fridge for a peek inside: "Look! They have a big bag of carrots in their fridge, just like we do. And a jug of pee! Just like in our fridge. Wait... a jug of pee.. this must be our house!"

I though my fellow cushies and other friends who are hip on the my jug-peeing antics would get a kick out of this story :)

Proper update forthcoming.

Post-op and doing well!

2010-09-25T09:53:00.000-07:00

One day post-op and I'm thrilled to report a smooth and complication-free surgery! Thanks so much for all your thoughts and prayers. You people rock. Here's a little update courtesy of my most fabulous husband, David:

Hey folks -

As most of you know, Sarah went into surgery first thing this morning. Well, that's done, and she is doing well, recovering in her hospital room. Here's the surgery story:

Dr. McCutcheon found and removed tumor tissue on the right side of the pituitary gland, with the characteristics he associates with Cushing's tumors (white, soft tissue vs. darker, rubbery normal pituitary tissue). The tumor was not touching the sinus wall (which is very good!) and the sinus wall was clear of tumor on inspection. He also found and shaved off a small area of suspicious tissue on the left side of the gland (though it did not have those Cushing's tumor characteristics). He estimates that a little over 60% of her pituitary gland remains intact; chances are good that she'll have full pituitary function. There was no CSF leak detected.

While he was at it, the surgeon also cleared out a pocket of gnarly infected goop in her sphenoid sinus, which was trapped behind some scar tissue left from the prior surgeries, and very likely the root of her nasty recurring sinus infections. Goodbye gnarly goop!

This is all great news. Sarah is quite happy at the outcome, and hopeful of being cured. She got what she was wishing for: a careful inspection of the whole gland, removal of anything suspicious, a thorough sinus cleaning, and (very likely) no long-term impact on her pituitary function. Looks like her big gamble might pay off!

Physical recovery from the surgery will take at least a few weeks. We'll be here in Texas until late next week, then recovering back at the rancheroo. We won't know for several months whether Sarah is cured of Cushing's (be patient and hopeful!)

Take care,
David Lowe

Our Family Vacation... Sorta

2010-09-23T17:53:00.000-07:00

Tomorrow is the big day: d-day, the moment of truth, the day of reckoning, the appointed hour (er... the appointed day?) or, for the more geeky among you, the day that I undergo a third transsphenoidal pituitary surgery to resect my residual ACTH secreting adenoma. Yep, the gland of oz is getting another trimming!

As most of you know, I've traveled to MD Anderson Cancer Center in Houston, Texas for this surgery. It's a little crazy -- I know -- and a very long way from home but I'm here to see a serious super-hero of a neurosurgeon, one who is among the top in the world for pituitary surgery. I mean he has a wikipedia page. How cool is that?

Anywho, it's been a crazy fun trip so far and I've learned something along the way: if you ever find yourself wondering how to take the bore out of a potentially very boring trip, say across several states to undergo neurosurgery, well folks, I've got the answer: bring your kids. Seriously, we are having such a ridiculous blast of a time. From soaring through the clouds (have I mentioned my kids are born to fly? Sounds cheesy, I know, but man does it get them fired up) and daily swimming at the pool to riding the elevator up and down then back up and then down, it's been one awesome adventure after another. And the fun doesn't stop there-- David's still got a few tricks up his vacation sleevies. He'll be taking them for a good ole fashioned train ride beneath a herd of man-eating sharks and to visit the NASA space center (featuring REAL LIVE SPACE SHIPS OMG OMG), while I spend my days lying in a hospital bed hopped up on narcotics dreaming up my own wacky rocket launches possibly also featuring man-eating sharks (I've heard the drugs here are REALLY groovy).

Oh and in non kid related fun vacation news, I got to meet another Cushie today! I've only met a few others IRL, all in passing at my endocrinologist's office, so this was the first time I've really had the chance to sit down for hours and yak up a storm face to face. It was awesome!

So, yes, so far our decision to make a little vacation out of this round of surgery has been a total blast. Will I still feel that way after I've had my lobotomy, err... I mean pituitary surgery, and am recovering in a hotel room, chiddlers running amok? I'll letcha know.

The Gambler

2010-08-26T23:24:00.001-07:00

Dumping Cushing's is shaping up to be a whole lot more difficult, time consuming and downright heart wrenching than I had anticipated. This disease, it turns out, is not nearly as down with being the dumpee as I am with being the dumper. As you might imagine, I'm pretty annoyed. I mean I totally dumped this shite months and months ago! And then, when it weaseled its way back in to my pituitary gland, I DUMPED IT AGAIN. And, now, after being not so subtly kicked to the curb twice (there's just nothing subtle about neurosurgery, even the purely endoscopic variety), it's back, carrying on as if we're still young lovers with nothing better to do than feel sick all the time.

*Sigh* In case I'm overusing the dumping metaphor and/or you have no idea what the crap I'm talking about, let me put it bluntly: I still have Cushing's. After two surgeries and the removal of two tumors -- Galinda and her as unnamed but equally wicked twin -- I STILL HAVE FREAKIN' CUSHING'S DISEASE.

Since I've been terrible at keeping this blog up-to-date, let me take you way back for a recap: after suffering for nine years with a whole slew of Cushing's symptoms, I was finally diagnosed with pituitary based Cushing's one year ago, almost exactly. My first pituitary surgery was in November of last year and, sadly, it failed for a cure. I was re-diagnosed a few months later and my post-op MRI showed a second tumor that had been missed the first time around. I was quickly sent off for a second surgery. Unfortunately it also failed for a cure. These past few months, since the second surgery, it was back to the same old Cushie testing extravaganza: peeing in jugs, FedExing vials of my spit to a lab in California, an MRI, etc. Once my re-diagnosis was double triple quadruple confirmed, the next step was far less pleasant: choosing a course of treatment with which to proceed.

It's hard for me to describe how difficult a decision it was. The best I think I can do is to have you understand that I spent two months near continuously thinking about it (no really). Strangely, it was the first time in my experience with Cushing's treatment that the next course of action was unclear. That's not to say that I didn't have options to chew on going into the 1st and 2nd round of pituitary surgery, but just that they were rather limited. Everyone involved in my care-- my medical team, my husband, myself-- believed that a 1st and repeat pituitary surgery were really the only reasonable courses of action given my the specifics of my case (mainly in terms of MRI findings). My options were more along the lines of: what should I wear to meet my surgeon? Should I braid my hair or put it in a bun? Not at all like the most recent decision, which included whether or not to proceed with a third pituitary surgery at all. (The braid or bun decision, btw, is one I make every day. It's just how a wear my hair, not some fancy impressive meet-your-surgeon hairstyles.)

The long and the short of it is that I've decided to have a 3rd pituitary surgery, scheduled for September 24th (!), so feel free to stop reading now; just leave me a little good luck message in the comments section. If, however, you're insane and/or a major Cushing's nerd (a term I just coined, btw, to describe people, like myself, who stay up into the wee hours of most nights trudging through research papers for the latest greatest on pituitary adenomas and cyclical hypercortisolism) and/or not entirely sick of hearing me talk about Cushing's, in which case, read on, my friend, read on :)

I was faced with three reasonable options to choose from: 1) radiation 2) a bilateral adrenalectomy or 3) a 3rd pituitary surgery.

The first option, radiation therapy, would involve blasting my pituitary gland with a few good doses of radiation, in hopes of killing all remaining ACTH secreting tumor cells and it was, honestly, not something I seriously considered. It's not that I have the seemingly common knee jerk reaction that radiation is bad (I don't), but, given the particulars of my case, I didn't seem quite right. When targeting pituitary adenomas, radiation has a reputation for causing collateral damage to the pituitary gland, leaving the patient hypopituitary. Hypopituitarism simply means that the pituitary gland is damaged and thus unable to produce one or more of it's hormones in sufficient quantities. It's managed by lifelong supplementation of the missing hormones. While pituitary surgery can also lead to hypopituitarism, by some stroke of cosmic luck, I have not become hypopit from my surgeries. And, as you might imagine, I'd very much like to keep it that way -- not a cell short of proper pituitary function. Also, since my most recent MRI does not show one single clear area on the pituitary where the residual tumor is located (instead there are several areas that are suspicious for tumor), I'd have to have my entire gland blasted, which would almost certainly leave it severely damaged. And finally, in case you're not already convinced: the cure rate is not particularly high -- I was quoted less than 50% for a case like mine -- and even when it does work to kill ACTH tumor cells, it often takes months or years for it to take full effect and, thus, for the patient's symptoms to resolve.

So, because radiation did not seem like a particularly good idea in my case, it really came down to a 3rd pituitary surgery or an adrenalectomy. This, my friend, is the real decision I've been agonizing over for the past few months.

A bilateral adrenalectomy, which we cushies affectionately refer to as a BLA and I for the longest time I thought stood for Byebye Lame Adrenals (not really), is the complete removal of both adrenal glands. Sounds kinda fancy eh? It is! And for the vast majority of patients, it's a cure for Cushing's. The beast is slain. Unfortunately, there is one major downside: you won't have adrenals. Funny that! It's all perspective I suppose. No more adrenals: whooohooooo, no more high cortisol screwing with every facet of your body. Yay! But on the other hand, no more adrenals: boooooooo! :( Your body thus loses its ability to synthesize adrenal hormones and you are left supplementing them for the rest of your life. Some people like to think of it as trading a horrible uncontrollable disease for a controllable one. Cushing's for Addisons. Then there's the not-so-fun fact that even a BLA is not a 100% guaranteed cure: the teeniest piece of rest tissue can continue to pump out and overload your body with cortisol. Fortunately, rest tissue is rare. I've heard the cure rate for BLA quoted as 90 - 99%. I think 95% would be a pretty safe bet.

The last choice, and the one that I ultimately made, was to have a 3rd pituitary surgery. The idea is that my surgeon will locate and resect all residual tumor. As for why I chose this route: the upside is very up. I could be cured! I could be cured and get to live my live as if Cushing's never happened (hormonally speaking, I mean). By that I simply mean that I could go on to live, post-Cushing's, without having to supplement adrenal hormones, like would be necessary with a BLA. Sounds great, eh? I know! Unfortunately there are downsides. The main one is the very real possibility that it won't cure me. 50/50 are my odds. Not bad, but certainly not anywhere near as glorious as the odds of a successful BLA. The other downside, and the one that had me really questioning whether a 3rd pituitary surgery was a good course of action for me, is that, as with radiation, I could lose pituitary function and become hypopituitary. Every time chunks of gland are taken from my pituitary, this is a real risk. I'm fortunate, in fact, to have intact pituitary function this late in the game.

So that's the long and the short of it. In many ways a 3rd pituitary surgery seems most risky to me: it's my last chance to be truly cured, no strings attached; but the worst-case scenario is also a distinct possibility: that being that I don't get a cure from the pituitary surgery, become hypopituitary, and then end up with a BLA. I'd end up having to supplement both pituitary and adrenal hormones for the rest of my life. It would suck, for sure. But, it turns out, it's a risk I'm willing to take in shooting for the jackpot reward of getting cured, without having to lose my adrenals. At this point, I feel lucky to even have a chance for such a good outcome and that, to me, makes it worth the shot.

Is it the right choice? I have no clue. There really is no easy or obvious answer with this stuff; no right choice. I've come a long way in my fight against this crazy disease and just need to continue trudging forward, making the best decisions I can with the information I have, in pursuit of a cure. One way or another, I know I will get there. And I do think this 3rd surgery will be it. My surgeon (a new one) and endocrinologist are off the charts crazy amazing awesome awesome awesome. I feel so blessed on that front. I could not be in better hands.

On a lighter note, when asked if he thought I'd made the right choice, David refused to answer because, he claimed, to do my thought processes justice, he'd have to think about it for, ohhhhhh, two months straight.

I probably did over think it. But only a little :)

An Update from the Gland of Oz

2010-03-12T00:34:00.000-08:00

After a 4 month hiatus, I finally have a few minutes to share a long overdue health update. Not so coincidentally, four months ago was right about the time of my first pituitary surgery. Yep, that's right, my *first* pit surgery. As Eli would say: what the?!??

Let me take you back for a quick recap. The aforementioned first surgery was a smashing success... sort of. My awesome surgeon found and removed Galinda, the wicked witch of the right side of the gland (to those of you who think of Galinda as the good witch, shame on you!) Unfortunately, it failed to cure my Cushing's. I know! Major Suckage! A big surprise came with the results of my post-operative MRI. It showed the right side of my gland looking clear and Galinda free. BUT... a never before seen tumor showed up all the way on the other side of the gland of Oz. Sooooooo. I flew to back to LA last weekend and had the itty bitty bugger removed Tuesday. Yep, three days ago! It's all happened so fast; I haven't even had a chance to name it. Please help! I'm not stuck on continuing the Wicked theme (though I'm certainly open to the idea) and am accepting any and all suggestions.

I am, by the way, doing well, recovering nicely from the surgery and have no inkling as to whether or not I'm cured. And I don't much care to speculate. Those of you who have been through this know how easy it is to obsess over every little change in your symptoms (or lack thereof). OMG, I totally just sneezed, like, REALLY loud! I haven't sneezed like that in years! I must be cured!

Okay so I exaggerate a bit, but you get the idea. Only time will tell.

No, I'm not referring to the Ultimate Fighting Championship

2010-01-31T22:26:00.000-08:00

Today I am collecting what I'm pretty sure is my 15th ever UFC. The non-cushies among you probably have no idea what I'm talking about. To those who do: wink wink giggle giggle high five!

Health update coming soon...

Misdiagnoses! My Seven Best

2010-01-22T22:47:00.000-08:00

It's some sort of crazy cushie rite of passage: over the years, as we bounce from doctor to doctor, most every Cushing's patient accrues more than his or her fair share of misdiagnoses. Makes sense, really. Cushing's is rare (though, arguably, not as rare as most doctors claim) and because it presents with such a dazzling array of seemingly unrelated symptoms, doctors account for them by slapping us with relatively common ailments. It must be PCOS. No, fibromyalgia... that's gotta be it! Diabetes! Chronic fatigue syndrome! Migraines! Hypertension! Thyroid!

I don't mean to insinuate that these diseases aren't perfectly real (they are!) and/or that they can't occur in conjunction with Cushings (they can and do!). But, for those of us who are eventually diagnosed with Cushing's, these earlier diagnoses often turn out to be symptoms as opposed to stand alone diseases, and nearly as often turn out to be... well... just plain wrong. In my search for answers, I got all kinds of kooky suggestions, ideas, suspicions and other misguided attempts to explain my symptoms from doctors and other health professionals. Here are seven of the most memorable:

1. "You exercise too much!" Yup, I actually had one doctor chalk my symptoms up to overexercising. He noticed I was carrying my bicycle helmet and said something like "You like to ride your bike, eh? Do you exercise much otherwise?" When he learned that I exercised 2 - 6+ hours every day (jogging daily, biking everywhere, dancing from midnight to six am... that sort of thing), he explained that vigorous exercise actually causes people to gain weight. I kid you not. A real live doctor said this! He also alleged that it accounted for my many other symptoms, but when asked to explain, he changed the subject and advised me to stop biking altogether, because, he claimed, in addition to the whole making you sick and gain weight thing, bicycling in the big city was terribly dangerous. I left his office, got on my bike, rode home, and found a new doctor.

2. "Your Chi is allllll fucked up!" My acupuncturist in SF, who was fabulous and funny, talked a whole lot about Chi and how incredibly out of whack mine was. Though she never actually used the words "allllll fucked up," this is David's interpretation of her diagnosis :) And frankly, it probably wasn't a misdiagnosis at all. Thanks to a certain hormone secreting tumor that disrupts every body system, I'm sure my Chi was alllllllll fucked up.

3. "Tell me more about your mother..." This, unfortunately, is a common occurrence for not-yet-diagnosed Cushing's patients: poo-head doctors claim that it's all in our heads. Because western medicine up to that point can't explain our symptoms, they assume that we must have some deep-seated psychological problem that's making us "sick." This only happened to me once, thank goodness... it was more than enough. It's incredibly unsettling to have a doctor tell you that you're not really sick, when you know, without a doubt, that there's something terribly wrong. Anyhoo, when this dude found out that I had what he called "a notable psychological history" (my mom was mentally ill most of her adult life), he decided that it had to be the root of my problems. He spent about an hour asking about my childhood and my mother's illness while completely ignoring my illness. He asked me all kinds of leading questions, like "do you sometimes feel so frustrated that you feel like you want to hurt yourself?" (ummm... NO!) and "Well, surely, after such a traumatic childhood, you must feel extremely angry to have all those years stolen from you." (Again: umm, no. Not really at all, actually). I, BTW, didn't tell him that my childhood was traumatic (it wasn't), instead, that was his interpretation based on knowing that I grew up with a mother who was mentally ill and that I was now inexplicably ill. The dude was a pompous jerk. Unfortunately, I can't say his name or even the clinic he's from (he's from a very well know clinic and this could be construed as slander or some shit, right?). But I can say this: he was right about one thing, it was all in my head -- in my freakin' pituitary gland, you freakin' ASSHOLE.

4. "Have you had your thyroid checked?" Dear lord, yes. Yes yes yessssssss. So. Many. Times. Some Cushing's patients have thyroid problems in addition to... well... Cushing's. Not me. My thyroid is fine. Downright spectacular even. But because thyroid problems are far more common than Cushing's and many of the symptoms overlap, doctors are much quicker to think thyroid! than they are pituitary tumor! Just for shits and giggles, I went through records to see how many times I've had my thyroid levels checked over the years. 13. Yup, 13 separate times over the course of 9 years. If only those tests had been aimed at checking my cortisol levels... sigh.

5. "You have chronic diarrhea because you're vegetarian. It's actually a good sign that you eat plenty of fiber!" Nuff said.

6. "I don't think it's fibromyalgia, but why not try these pills and see if they help!" This doctor ruled out fibromyalgia, but wanted to treat me for it anyways... ?!? He preformed some weird test, which basically involved pressing on me a whole lot...

Doc: Does this hurt? Me: No.
Doc: Does this? Me: No
Doc: How 'bout this? Me: Umm... no?
Doc: This? Me: No

This went on for quite some time and then he said something like: "We'll, it's definitely not fibromyalgia! Haha." But then a few minutes later: "Why not try this medication for it anyways and see if it helps? It's also an antidepressant, so it'll make you feel real good!" Nice.

7. "Super DJ Acid Fingers!" Okay, so this one doesn't qualify as having come from a medical professional on account of it being a self-diagnosis, but still... it's awesome. In my early years of Cushing's, I experienced all kinds of whacked out skin changes, one of which being that the tips of my fingers became extremely dry and cracked and painful and nasty. My old friends, I'm sure, remember the stunning rainbow of bandaids on my finger tips. I was taking several chemistry lab classes at the time, which involved experimentation with acids and because I wasn't much of a glove wearer (you know: young and invincible), I often spilled little bits of it on my fingers. I assumed that the fucked up fingertips were a result of the acid, which earned me the nickname "acid fingers." I couldn't figure out why my fingers never healed after I started wearing gloves and then even when I refused to work with acid altogether. My doctor said there was no way that the acid was causing my skin problems. I didn't believe him at the time, but hey, turns out one of my doctors was right about something! Yay!

We'll, that's all I've got for now. I'd love to hear from other cushies... what were your best misdiagnoses over the years?

The bright side of Cushing's: boy have I learned a lot

2009-11-12T01:20:00.001-08:00

At the risk of sounding like some poor schmuck who recently ended a particularly heinous relationship... boy have I learned a lot. I think it'd be rather hard not to, after going through something as shit-hellish Cushing's, but, hey, I'm still kinda proud about it.

In particular, I've learned a lot about doctors. They, I now understand, are super important. When you're healthy, it's all well and good to assume that doctors are useless. If I had a nickel for every time I've heard someone brag that they've been gifted with great health ("Oh, I don't get sick" or "I haven't been to the doctor in 3 years!") And, sadly, it's even easier for us sick folk -- particularly those of us in the rare and hard to diagnose camp, who struggle for years to be taken seriously -- to come to the exact same conclusion... that doctors are useless pile of doggy doo. Believe you me, I was so there. But here's the thing, when you're sick -- I mean truly ill -- you not only need doctors, you're completely at their mercy. Sure I struggled for years to find my Doctor Right(s), but if it weren't for them -- particularly one brilliant endocrinologist and kung-fu endoscopic brain surgeon -- I'd still be walking around with a tumor in my head. No amount of healthful living, meditation, yoga, prayer, or positive thinking is going to get you fixed up when you have Cushing's. You just need a doctor, plain and simple.

Unfortunately, it's not actually anywhere near as plain and simple as us sickies would like, because very few doctors will do. Turns out it's my job, as the patient, to fight to be taken seriously by the medical community, and in the case of Cushing's, this often means traveling to see one of the few specialists who understand the disease. I've recently had the privilege of getting to know a whole slew of people with Cushing's and it's story after story just like mine: the years of missed diagnoses, the bouncing from doctor to doctor to doctor, until, years later, you seek out the right one, one who's willing to do the appropriate testing to rule Cushing's in or out. In my case, after 9 years of leaving it up to doctors, it took only 6 months of truly advocating for myself to finally get to the bottom of my mystery illness. I only wish I hadn't waited until I was desperately ill.

See what I'm sayin'? Boy have I learned a lot. I've learned to trust my instinct, deeply and without hesitation; I've learned that it is my job, and mine alone, to assure that I get properly diagnosed in the face of a rare disease. A doctor, even Dr. Right, is simply my partner in helping me figure it out and get better. It actually kinda sucks. I'd love to go on believing blindly that my job as a patient is simply to relate my problems to my doctor, so that she can figure out what's wrong and fix it.

But, in many ways, it's also kinda awesome: because of course I should be in charge of my own health! Duh! When you realize the power you wield over your health -- especially after years of feeling like it's slipping away for reasons beyond your control -- it's... well, kinda amazing. I will never again remain silent when I believe that something is wrong and/or that my doctor is on the wrong path. I now know that I am the only one who cares enough to ensure that I receive the best possible medical care and I will never again settle for anything less.

Those have been my big lessons... but there are more! I've learned that being sick sucks and that it's very hard for people who've never been chronically ill to understand just how much. I've learned that my friends and family are, for the most part, truly amazing and really love me a whole lot... even when they don't understand. I've learned that I'm never alone in what I'm going through.

I have to admit that I look back on the past 10 years with a lot of sadness. I've lost a whole lot as my health slipped away. But, just like someone going through a break-up from a real shit hole of a relationship, I comfort myself with: "Well, I sure did learn a lot!" And it sounds cheesy as all hell... but it's also totally true -- I really did learn a lot! It comforts me and allows me to look ahead to life after Cushing's with no regrets, just thankful for where I am right now.

So, in the spirit of a good ol' fashioned break-up letter: goodbye Cushing's, it's been a wild ride and I really did learn a lot, but you are so dumped.

How I spent my fall vacation in beautiful Southern California

2009-11-05T14:56:00.000-08:00

In which I have brain surgery and probably cough up a chunk of my own skull

It's been a crazy few days (understatement of the year? maaaaaybe). We landed in LA late Sunday night, checked into our hotel, slept. Monday I met my surgeon and underwent a whole slew of tests to prove that I was fit for surgery - including a physical, appointments with two cardiologists (I actually had to run on a treadmill while they did a EKG and heart ultrasound!) and the all-important pre-op eye exam (ummm... wf?!?). I was cleared for surgery (yay!), which took place early morning Tuesday. Post-surgery, I was in the hospital for 24 hours and have since been recovering happily at my hotel.

My surgeon was fabulous and awesome and seemed very pleased with the surgery and my recovery so far, as you can see from the smile on his face afterwards (will post picture soon). He found a clear tumor on the right side of the gland, which he removed with no complications or surprises. This was a HUGE relief, especially because when we went over my MRI, he showed us what he thought was "something suspicious" on the left side (in addition to the tumor on the right). We agreed that he would remove the right-sided tumor, but also peak around to the left to be sure there was no second tumor. He did and there wasn't. Phew.

I did have some post surgery excitement, when I got super sick with sudden onset nausea, headaches and horrendous muscle aches. It was INSANE. Think the transition phase of labor. Yeah! Some serious craziness! Anyhoo, I felt almost immediately better when the nurse gave me a big dose of dex (a fake form of cortisol, which for reasons I won't go into, is the bane of cushies everywhere), so we think it was a major post-op steroid crash. This is good news! Since my body is accustomed to too much cortisol, it makes sense that I would exhibit withdrawal symptoms when the source is removed. It really really sucked a lot, but gives me hope that my Cushing's has been cured.

Oooh and another moment of excitement occurred early Wednesday morning when I coughed up a small chip of something hard and bone-like, which I'm pretty sure was actually a tiny fragment of my own skull. It was more than a little freaky, but everyone assured me that it was normal and nothing to worry about. David says the surgeon missed a great opportunity for a joke when we showed it to him and he said something like: "Yeah, I know exactly what that is, nothing to worry about" but could have said: "Oh! I was wondering where I left that! Thanks!"

I met with my amazing endocrinologist last night (the Cushing's specialist to whom I initially traveled for testing). Wednesday nights are actually his normal office hours, so he was able to squeeze us in for a quick 15 minute appointment. So glad he was able, cuz it was super helpful. I got my hydrocortisone (longer-term replacement cortisol) dosage sorted out and he agreed that my post-op crash was a very good sign. And I thanked him in person. And got a picture with him. Yay!

So that's the scoop! I'm slowly recovering at my hotel. Tonight I have to do a "sleep study," during which I think they monitor my oxygen level overnight. Nothing like being all hooked up to machines to make for a restful night's sleep, eh? Bleah.

Tomorrow we head back to Oregon to be reunited with the chiddlers. They've been having a grand ol' time with my Dad, who flew out from Edmonton to hang out for the week. Sounds like he's been keeping them busy with all kinds of fun outings. When we spoke on the phone today, Micah told me about a trip to McDonalds where he ate chicken McNuggets and got Astroboy toys. Eli reported a trip to the airport where he got to touch a real plane. They probably won't be glad to see us ;)

David has been fabulous and amazing as per usual and I think we should all throw a party in his honor just as soon as I'm feeling better.

More than you ever wanted to know about my pituitary gland

2009-10-31T18:48:00.000-07:00

Apologies in advance to the squeamish among you, but my pituitary gland is hijacking this blog... at least temporarily. I'll try to continue with the occasional chiddler update, but, for now, you're stuck with a crash course in endocrinology.

Most of you know that I've been sick, but some of you, particularly those who are far away, probably don't know exactly what's going on. So here's the scoop... I was recently diagnosed with Cushing's disease, a rare endocrine disorder caused by prolonged overexposure to the hormone cortisol. Cortisol -- a life-sustaining hormone produced in the adrenal glands -- does all kinds of super important things. It regulates blood pressure and blood sugars, supports the immune system, regulates the metabolism and helps the body in times of stress. Sounds great, eh? It is. Unless, like me, you have too much of it. Then it is very very horrendous and sucky and bad, bad, bad and a big pile of shit.

The whole "too much cortisol" thing is called Cushing's syndrome. Cushing's disease is a type of Cushing's syndrome that occurs as a result of a small, non-cancerous tumor on the pituitary gland. The tumor secretes excess amounts of the hormone ACTH, which in turns tells the adrenals to make too much cortisol. If you'd like to read more about it, I recommend the Wikipedia page here.

For me, the whole terrible mess started about 9 years ago, with a sudden onset of symptoms while I was living in San Francisco. I got very sick, very suddenly. My list of symptoms was extensive and included: crazy sleep problems, extreme dry mouth and chronic thirst, heart problems (though they were relatively minor at the time), distressing skin problems, rapid, uncontrollable weight gain (despite healthy eating and exercising constantly), GI problems, sore muscles, exhaustion. This really is just to name a few, but I'll spare you to the details. The hyper-curious among you need just google "cushing's symptoms." Lucky me, I got them all.

As you might imagine, I was freaked out and felt as though something had gone terribly wrong with my body. Those of you who knew me well then remember my frequent trips to the doctor. Unfortunately, they came up with ziltch. Nada. Nothing. And at the time, nobody even mentioned Cushing's. When we moved from SF to OR, I gave up looking for years and went on with my life.

My symptoms continued, and I continued to feel unwell, but not horribly so. Overall, I was able to lead a super happy life despite my underlying health problems and, though I did continue to feel like something was wrong, I'd convinced myself that it wasn't anything serious.

Boy was I wrong. It hit me like a slap in the face about 10 months ago, when my health took a very sudden turn for the worse. All my symptoms worsened and I developed new ones. My hair started falling out in clumps. My muscles became so sore and weak that -- despite the fact that I was jogging for an hour every day, had a regular and vigorous yoga practice and spent almost all my time running around with the kids outdoors -- I could barely walk by the end of the day. I developed some serious problems with my heart (doc: "you're not leaving this office until you start this blood pressure medication") and all kinds of other thing started going haywire.

I knew something was seriously wrong. Fortunately, I lucked out with a very smart doctor who strongly suspected I had the little known, very rare disorder, Cushing's disease. Unfortunately, I wasn't able to see her again and my next few doctors were clueless. I decided to start researching online and from the moment I first read about Cushing's, I knew, without a doubt, that I had it. David was more than a little sketched out about the idea of self-diagnosing on the internet, until I forwarded him all the info I could find on Cushing's. He was also completely convinced that I had it from the moment he first read about it. For him, it was partially that I had every symptom and that he already knew I had high cortisol (the one consistent thing that had been turning up in my lab results). But mostly, he diagnosed me based on one symptom, which he had never even thought of as such. You see, one of the telltale signs of Cushing's is bright purple striae (which is a fancy and somewhat more flattering word for stretch marks) that appear on your abdomen, boobs, back and other parts of your body. I started getting them everywhere very suddenly when I first got sick 10 years ago, but we never thought of them as a symptom. We just thought they were weird.

Anyhoo, after my experience of being brushed off by doctors for so many years, despite the fact that my symptoms and lab results pointed to Cushing's, we decided to skip the middleman and travel to see a Cushing's specialist.

Well, that was about the best decision I've ever made. The testing process was INSANE and involved peeing in jugs, fedexing spit samples, several blood tests and an MRI, but the long and the short of it is that my pituitary MRI showed a tumor and my biochemical tests proved that I had high cortisol as a result of the tumor. All in all, once Cushing's was suspected, my diagnosis came relatively quickly, something for which I am very very grateful.

Phew.

So here I am now, thrilled to be on the other side of diagnosis (fellow cushies, who've been through that particular stage of hell, know exactly what I'm talking about) and very ready to move on to surgery. Which, btw, is Tuesday. Yep, as in 2 days from now. Brain surgery! In 2 days! I know it sounds weird, but I'm stoked. When I express my anxiety about my health predicament, I think people assume that I'm nervous about the whole brain surgery thing. Sorry folks, hate to disappoint, but I'm not. "Not even a little bit?" is what people inevitably want to know. Nope. Not even. Well, unless sheer and utter joy counts as nervousness... seriously, I really am stoked. My surgeon is top notch and I have absolutely no doubt that I'll get through surgery just fine. I'm also certain that this is the right step for me take towards ridding myself of his horrible disease. I am nervous about few other things. Mostly about whether or not the surgery will work to cure my Cushing's. First time pituitary surgery has about a 2/3 success rate, so my odds are good but not fantastic. I'm optimistic though, and mostly just thrilled to be moving in the right direction.

If you'd like to learn more about Cushing's, please watch this video . It focuses mainly on the weight gain aspect of the disease, but also has great overall info.

Also, friends and family, if you're interested in knowing what to expect from me in terms of recovery, please read this letter, written brilliantly by a fellow cushie shortly after her surgery.