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.
Friday, January 7, 2011
Saturday, September 25, 2010
Post-op and doing well!
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
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
Thursday, September 23, 2010
Our Family Vacation... Sorta
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.
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.
Thursday, August 26, 2010
The Gambler
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 :)
*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 :)
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