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

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

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.