It’s now a thing of my past, so I’ll probably have to change the title of my blog someday in the near future. I no longer have that horrid disease that did a pretty bang up job of controlling my life for over 3 years. I’m almost 2 weeks out from having my adrenal glands removed, and I can honestly say that I feel rather decent. The rate at which I’m healing has been speedy, and I have very few complaints thus far.
I last left off in the pre-surgical prep room with a picture of my CC (Cleveland Clinic) swag, including a fancy gown, hair net, non-skid socks, and a swanky zippered tote for my parents to carry the clothing and shoes I wore to the surgery center. I suited up that morning, and of course had time to take one last selfie, as it would be the last picture of me to ever exist while having Cushing’s. I can’t say it’s an attractive picture, but it’s one I’ll hang onto as being my last memory while lucid and having an over production of cortisol in my life:
I came out on the other end and got this sweet water jug thing as a You-lived-to-tell-the-tale type prize. Or maybe they gave it to me because I was incredibly thirsty out of surgery…either way, they mean business up North, and more CC swag for my pile.
In all seriousness, the removal of my glands took roughly 5 hours. I checked in at 5am, was called back around 6am, got dressed, met the surgeon for the first time in person (he was/is legit), then was taken back to the OR around 7am. I chatted and joked with the people who’d be in the room during surgery for a bit before I took my final breaths and drifted into LaLaLand, where I don’t recall a thing! Everything went smoothly in the operating room, and I got to use this fun little tool when I came to, to help with my breathing:
I was told that I chewed on my breathing tube initially (I was intubated and put under general anesthesia), as I was positioned on my stomach, so I had to be turned over and they put some other crap in my mouth so that I wouldn’t chew on it the whole time and would be able to breathe during surgery. The surgeon went in through my back, in a procedure known as a laparoscopic bilateral adrenalectomy via the posterior retroperitoneal approach. This technique isn’t highly used, but it makes much more sense to reach the adrenals through the back, as that’s where they’re located, atop the kidneys. I have 6 small incisions, 3 on each side, with internal dissolving stitches, covered by glue, steri strips, and bandaids.
I spent a few hours in the recovery room, but then was able to go up to a regular floor, where I only had to spend a day. During that day however, I consumed my fair share of beverages, as the IV drip I was on was not satiating my whistle!
I was put back on a regular diet soon after I came to, but I think there was some confusion as to how hungry I actually was:
Roughly 24 hours after I was brought onto the recovery floor, I was told that I was being discharged! All of my doctors and their teams were in agreement that I was doing well enough to leave at that point, also keeping in mind that hospitals are filthy, dirty breeding grounds for diseases and germs. Because I wasn’t sick sick, they didn’t want me staying in the CC and running the risk of catching something. So naturally, I disrobed from my lovely hospital attire and took a “I’m getting out of here selfie”:
We stayed at a hotel nearby the CC, and I was up and about the next day. We had a celebratory dinner of fantastic Indian food, where I was able to eat 1/3 of my favorite meal:
We also explored Cleveland’s Botanical Gardens, where we saw some beautiful flowers and plants:
We had to stick around the area until Friday afternoon, when I had a follow-up with my surgeon and my endocrinologist, who both gave me the go-ahead to get the heck outta there. They said everything looked wonderful and that I should play the part of a hurting patient who just had surgery, so as to gather sympathy from others, ha ha (I ain’t no tease!)!
All in all, I’m super glad I followed through with the BLA – I have no regrets (yet). My adventures in medical land would not have been possible without the help, love, and support of sooooooo many people all along the way, so THANK YOU all, so much, for sticking by my side. I owe a lot to these two, who’ve been super amazing throughout the whole ordeal, and were great to have in the Cleve:
So my dad flew home early Saturday morning, and my mom and I started our road trip home from the Cleve to Tallahassee, with several stops along the way. One of the first:
The second, in Newell, West Virginia – the Fiestaware Factory/Factory Store (I’m a sucker for colorful dishes, what can I say?!):
Next up, 2 nights in Highlands, North Carolina:
And lastly, a passporty photo of myself (so vain) 1 week post-op.
I’m home and things are going smoothly – I’ve lost all the weight I gained in the hospital (they pumped me full of 10 pounds of goodness), plus ~10 lbs, so I think things are working. I’m on a strict dose of 2 meds, 3x a day, and will meet again with my endocrinologist at the SoFlo CC on June 16th. I wear my medical alert bracelet, carry a SoluCortef (extra strength cortisol) injection with me in hopes that I’ll never need to use it, and have alarms set on my phone for my medicine times. I also enjoy low-cal sports drinks, yummmmmmmm. (My electrolytes are now wonky.)
While I don’t know that I’d say being Adrenal Insufficient is enjoyable, it sure is manageable, which I’ll take over Cushing’s any day.
As always, thanks for your love and support – I’m going to be just fine.
With love and no diseased glands in tow,
Well, they’re officially off of my kidneys and out of my life. My adrenal glands, that is. Before heading up to Oh-Oh-Oh-Ohio, some of my lovely friends back home threw a going away dinner for me, wherein they got me an awesome cake:
It read, “Time for you to push that Cush – we love you Laura!” Thoughtful and appropriate, and I only then learned that “Kush” is a weed reference (I live under a rock). However, the Cush they were referring to was an abbreviation for Cushing’s, the stupid disease I’ve been dealing with for the last many years.
My Gland Finale send off was a ton of fun, and my friends are the best and most thoughtful (thanks ladies and gents!). We ate a magnificent dinner and finished it off with the aforementioned/photoed Cush cake (carrot for the win!), and I was showered with balloons, flowers, sweet cards, and a few other delicacies. It was definitely a morale booster as I headed up to Cleveland to have surgery.
My parents and I headed up to Ohio from Florida a couple days before surgery, and moseyed our way on up there, passing by Cleveland, Tennessee en route. I think the Ohio version rocks harder, or at least they have a Rock & Roll Hall of Fame there…The Cleve, as I came to call it, didn’t seem all that bad, and it wasn’t the “Mistake on the Lake” I’ve heard it referred to as – it was full of charm and culture and a really huge hospital, the place I’d learn to call home for a few days!
The clinic campus in Ohio is phenomenally large, spanning for several blocks, plus other locations in the area. I just so happened to have my surgery at the main campus in the Cleve, which seemed to be a convenient location in the city, with my parents at a hotel only a couple blocks away.
My day of pre-op on Monday, May 5th, went really well – I started at 8am with a CT scan of my abdomen/adrenals, then proceeded on from there to just about every other appointment one would every need to have leading up to surgery.
Everyone we met with was super friendly and nice, accommodating and knowledgeable, and made me feel as though I had made the right choice in choosing the Cleveland Clinic for my Bilateral Adrenalectomy (BLA). The Ohio branch is ranked #2 in the country as far as adult endocrine affairs are concerned. Can’t beat that!
I was able to end the day with one last hurrah while having my glands – as it just so happened to be Cinco de Mayo. A margarita (OK so I had 2) and queso were the perfect ways to end my disease-filled life – and you best believe I enjoyed every bite and sip!
I had to cut off food and drink at midnight, in preparation for the surgery that was about to ensue, but that wasn’t a problem, as I was asleep by 9:30pm for my 4:00am wake up call...Bilateral Adrenalectomy or Bust!
April 8th was a day to celebrate Cushing’s awareness, a disease/condition/syndrome so aptly named after the man who “discovered” it, Dr. Harvey Cushing. I toasted him around 1pm on that day, with a refreshing glass of cherry lime sangria at a lovely place in DC, while there on vacation. I should have done something to promote Cushing’s awareness on that day, but in my mind, better late than never. Also, I feel as if I need closure to my situation, and the end is finally in sight.
Before my trip to DC, I met with a new endocrinologist at the Cleveland Clinic in Weston, FL, and it was determined that I would need to have my adrenal glands removed (shocking information, I know!). The majority of the doctor’s time is spent at the Cleveland Clinic in Ohio, where they have something like 26 endocrinologist and 6 endocrine surgeons, so he recommended me to their top surgeon way up there. I was originally scheduled for surgery on April 22nd, but that date got changed to May 6th, which is less than a week away at this point!
After meeting the new doctor, I of course had to do lab work for him, in the form of a 24-hour urine collection, dexamethasone suppression test, and a few random blood draws – which always makes for an enjoyable couple of days. They do know me by name at the lab where I have my work done, but I don’t know if that’s necessarily a good thing.
And then, I agreed to participate in a 6 week saliva study for the Cleveland Clinic in diagnosing people with Cyclical Cushing’s, as they think that’s what I’ve been blessed with. So every day for 6 weeks, I had to collect my saliva 2x/day, by placing a small cotton-ish log roll (it kind of looked like a small tampon, but without the string) under my tongue for 5 minutes at designated times. My cortisol was being tested, and saliva is a very accurate measure for said hormone to be tested. I was unable to drink alcohol, coffee, or juice 4 hours before the collection time, with no food or drink an hour before, then I had to rinse my mouth out with water 10 minutes before the collection. I then had to freeze the samples, and send them off to Cleveland in 1 week batches. I bet you’re jealous after reading about that, as it was really fun. But it will hopefully benefit others down the road, somehow, somewhere…
So now I’m in the preparation/anxiety stage of my upcoming surgery. For starters, I’ve never been to Cleveland, but I’m excited to visit a new place. It’s still a bit cool up there temperature wise, so I’ll have to forego my sundresses and sandals for sweaters and boots. Or pajamas, slippers (or those socks with the grippy things on the soles) and hospital gowns, as I doubt I’ll be outside seeing the sites all that much. On the other hand, I don’t know that I feel all that prepared for surgery, but I do have 7 pre-op appointments next Monday, the day before my surgery. That will be the first time I meet the surgeon and his team, as well as the last day that I drink a margarita and eat a lot of queso while having adrenal glands, as it will be Cinco de Mayo! Hospital stays aren’t the greatest, but I feel like an old pro at this point! This is what I looked like following my 2nd brain surgery in December 2011 – my, how far I’ve come!
It’s hard to believe that it’s been so long since I’ve been battling this horrid disease that is Cushing’s, but I feel hopeful about this next/last step in the treatment process. I will in turn be adrenal insufficient for the rest of my life, but it’s a manageable condition, and I’ll apparently learn all about it when my endo comes to see me in the hospital the day after my surgery. I will have to take a few medications daily in order to stay alive, and wear a medical alert bracelet or other piece of jewelry, in case I’m ever in an accident or pass out on the street and need to be revived or treated. The swanky bracelet is a precursor to the sweet ratatattoo I’m going to get – inside wrist, haven’t yet determined which arm.
I have much more to write, but don’t want to have an overly long blog post – so hang tight and I’ll post more about the Gland Finale before my surgery!
I started 2014 thinking that it would be “The Year Of No Complaints” for me. So far, it’s pretty much panned out that way, but my only real complaint stems from this elephant in the room / on my stomach that is Cushing’s Disease. It just won’t seem to leave my life in a timely fashion.
To give you an update, the last time I wrote, I had just returned from a successful trip to Shands, wherein I was referred to Emory to see a “specialized specialist.” Turns out that Emory’s person of that description is not what they say she is on paper/their website, and it took her 5 weeks to determine that my case was “too complicated” for her. The office manager for Emory’s Neuroendocrine Pituitary Center told me that they “really wanted to help me,” but perhaps I should check out the Pituitary Network Association’s website to find a legit doctor. So that was disappointing, and it was also in December, so then I basically had to start over in finding a new specialist.
Over the last few years, I’ve had bizarre luck with endocrinologists and the technology that is the internet. In my mind, a doctor’s office should ensure that the patient receives care, and should never tell him/her to use the internet as a means of finding their own treatment. My first treating endo told me to google my surgery options, now Emory (Emory!) tells me to use the internet. It’s fine that they didn’t feel comfortable in handling my case, but you’d think they’d know of someone who could…am I that much of a medical anomaly?
With a little help from my newly reassigned case manager (thank some higher power for her!), I was able to get in as a new patient at the Cleveland Clinic of Florida, to see a great endocrinologist. He’s the head of the department at the Cleveland Clinic of Ohio, but travels to Weston, FL 1 day/month to see patients. I was on the books for January 20th, but got a call a few days before saying that the doctor was sick and wouldn’t be able to make it. And since I’m a new patient and need a longer appointment time, I couldn’t be rescheduled until March 17th. Just a little bit of a setback…
But then I got a call saying that the doctor will be spending an extra day to see patients during his monthly trip in February, so I’m scheduled for Tuesday, Feb. 18th. Cross your fingers that this appointment will actually happen, as the new doctor is “delighted” to take on my case! That’s reassuring and gladly welcomed after many months of doctors seemingly not giving a shit…it’s not a good feeling.
I’ve learned to be extremely patient in having this disease, as things rarely go as planned. When told in late October that I needed my adrenals out sooner rather than later, I went into panic mode. In theory, I should have already had my 5th surgery, but I haven’t even been in for a consultation yet. It’s only my life on the line here, no big deal. To make light of the situation, one of my good friends sent me this lovely little stuffed kidney with a homemade party hat on top. The party hat signifies an adrenal gland, as I often refer to the adrenals as “kidney party hats”:
So besides having Cushing’s, which I hopefully won’t have for too much longer, my year is off to a great start. I was able to spend the holidays with my wonderful friends and family from in and out of town, so that was truly special and a nice way to transition to 2014.
I came up with some 2k14 goals, and they are as follows (in no particular order):
Spend more time with loved ones:
Get up in time to watch the sunrise (on occasion):
Step up my crafting game:
Eat delicious/nutritious/meaningful meals:
Spend more time in the great outdoors:
Maintain my sense of humor:
Beat Cushing’s Disease:
As always, I thank everyone for their continued love and support. This will be my year to shine – oh yeah – I’ve already made it big time, as a feature on totalbeauty.com. Thanks to a talented writer I know from back in the day, my message about Cushing’s is making it’s way in the world:
Kicking Cushing’s To The Curb,
You may or may not have noticed, but I haven’t been active on the blogosphere for nearly a year. It’s been an eventful year, to say the least, but the best part is yet to come. I continue to battle with Cushing’s Disease, and in fact, my symptoms have worsened during my inactive time.
On April 16, 2013, I had another brain surgery, bringing my total to 4 at this point. This one was a bit different from the previous 3, as it was “bloodless brain surgery” and was performed by an amazing man named Dr. Foote. The technical term of said surgery is “stereotactic radiosurgery” and in a nutshell it’s an incredibly high dose of radiation, delivered in just one dose. I was given the highest dose that is suitable for the human brain, and it did nothing to help my situation.
So what the heck is that thing? It’s called a halo and it’s made of titanium. The placement of the halo was by far the worst part of the procedure, as they literally screwed it into my skull in 4 places and I was awake the whole time. I was given 1 valium, but with my size it didn’t do a thing to help me. I was given 4 incredibly painful shots of a local anesthetic, then a team of doctor men (it took 4) worked quickly to secure the thing onto my head. The pain didn’t last long, but the whole headpiece was just a bit cumbersome. After it was in place, I went back to the staging area/waiting room and got to eat breakfast. It was rather entertaining, as I couldn’t exactly get food into my mouth without hitting that lovely titanium ring around the middle of my head. No biggie. The staff took pictures of all of us who were having the procedure done that day, and printed them out for our scrapbooks. It was odd, to say the least…
The actual surgical procedure didn’t take too too long, and I equated it to having a giant Xray. I laid on a bed and my head was secured to the table and the rest of my body was strapped down. The radiation machine (Linear Accelorator) rotated around me 5 times or so and delivered a ridiculously high dose of radiation to my pituitary. I only heard noises of the machine and didn’t feel a thing. Painless and bloodless. #winningcombo
So fast forward to many months later and I recently returned from a 2 day trip to Shands in Gainesville. I was able to knock out 4 follow-up appointments with my team down there, and everyone had the same thoughts: I looked worse in October than I did in April :( I started the trip off with a 2 hour wait to get my MRI. Needless to say, waiting is really fun:
I finally got called back for my MRI, and it was uneventful, as usual. However, I did elect to listen to Gainesville’s premier pop station, so I got to listen to Miley Cyrus, Lady Gaga et al as my brain was being imaged. The picture below is the MRI tunnel thing that has become a major part of my life over the last few years. This thing and I get along real well:
To make a long story short, my doctors all agreed that my Cushing’s is a fierce little monster and they’ve done all that they can do in treating it at Shands. I have had 4 brain surgeries and I’ve tried a medication, but have not showed any improvement. My neurosurgeons believe that the residual tumor cells have jumped into my cavernous sinus, which is home to cranial nerves 3,4,5 and 6, as well as the carotid artery, and that is “a dicey place to be mucking around.” Dr. Foote was “significantly bothered by the trend in the wrong direction” and cursed my tiny tumor cells and their stupid genetic code. The appointment with him was very thorough, and he’s one of the best doctors a patient could ever have. And he’s not so bad to look at:
He reviewed my morning MRI with us in the room, and it was really interesting to see inside my brain like that! You could even see my double chin on a few of the cuts: (cute, I know)
Endocrinology and neurosurgery were my Tuesday appointments, and they agreed with Dr. Foote’s observations and recommendations. So, I have been referred to Emory in Atlanta to their Neuroendocrine Pituitary Center and will go forth and prosper in Georgia. I have to have my adrenal glands removed in a procedure that is called a Bilateral Adrenalectomy (BLA). We’ve exhausted all resources through 4 brain surgeries and medication that I didn’t respond to. The BLA will actually cure me of Cushing’s, as I will totally stop producing cortisol. In turn, I will trade it for something called Addison’s Disease, which is not the most ideal disease, but it’s manageable through medications. I don’t know too too much about it at this point, but I will have it for the rest of my life, so I’m sure I’ll know everything in the coming days/months/years/lifetime. I’m nervous as all get out about having this major, life-changing operation, but at the same time, it will allow me to get my life back (and to not look like a bloated manatee anymore, yay!) and move on, something that I have been looking forward to for years at this point.
So that’s where I stand right now and am waiting to hear back from Emory regarding an appointment time. The sooner the better is what my referring endocrinologist said, as I’m not going to get any healthier in the coming weeks or months. My goal is to knock this surgery out before Thanksgiving and use the holidays as a time to rest and recover. Send some positive energy my way and I’ll get through this Gland Finale with no complications :)
I am extremely lucky and grateful to have such a wonderful group of friends/family/doctors on my team and by my side every step of the way. As always, thanks for your continued love and support and I’ll keep y’all updated more regularly than I have in the past, as I’ll have a lot of downtime after my BLA.
Kicking Cushing’s to the Curb (will need to change that soon!),
If you know me at all, and even if you don’t, you’ll know that I am a sucker for a good documentary. I am a horrible movie watcher, but put a documentary on, and I’m hooked for the duration of the doc, and probably even for the length of another one. Especially if it deals with food and/or healthy living, I’m even more intrigued (but I’m open to any)…a few weeks ago, following the recommendation of a friend, I sat down to watch Vegucated.
It was vegucational. It made me laugh. It made me cry. It did all of these while following 3 “meat and cheese loving individuals” for 6 weeks who adapted a vegan diet into their lives. The film explored the woes of the food industry, and the personal lives of 3 people, who helped to change the world, one bite at a time. If you haven’t yet seen it, I highly recommend it. I haven’t really incorporated many animal products in my diet since watching the film.
I’ve always had the thought that a vegan diet would be nice in the back of my head, but I didn’t think that I could do it. That’s just nonsense, as it’s really not that hard! Not only am I helping to save the planet, but I feel better and have tons of energy, starting from the minute I pop out of bed in the morning. I am also sleeping much better at night, and I’ve lost some lbs too. I can’t complain about any of the things I’ve just mentioned, except for the cost of buying vegan products, as they’re not that cheap, womp womp. But, I am no longer buying other expensive cheeses/dairy products/meats (although I never really have been big into the meats), so I guess it’s a trade-off.
I’m trying out a somewhat modified vegan diet to see if it will help decrease my body’s cortisol production…I’m eating a vegan diet at home, and if I’m out, it’s sometimes not easy or enjoyable to eat vegan, so I’ll modify my plan then and eat to my taste buds’ contentment (they choose animal or non-animal)! I really enjoy cooking at le home, so there hasn’t been much of a challenge in finding things to make. Even my roommates and friends have enjoyed a few vegan meals, and they are by no means vegan or even vegetarian. For breakfast, I usually juice or I’ve recently taken a liking to oatmeal:
Some of the entrees/main dishes I’ve made include: butternut squash and other vegetable soup (pureed), guacamole, cashew/cucumber salad, curried vegetable coconut milk delight, beet burgers, & stuffed spaghetti squash:
As I learned from my “Vegan Sourcebook, Second Edition”, the term is pronounced with a long e and a hard g…not to be confused with “veggan,” “vaygun,” “vayjun,” or “veejun,” so please don’t call me any of the aforementioned. However, I don’t much like labels, therefore I don’t consider myself to be a vegan. I simply eat a vegan diet. Vegans aim to use no animal products, but I haven’t converted to that side yet, as my purse and wallet are still made of leather, and I feel as though I probably have other things in my bag o’ tricks that have animal products in them…I’m just trying my best to avoid animal products in my diet…The results? So far, so good! In fact, I’m loving it.
I go to Shands to see my new endo this coming Thursday, so we’ll then find out if eating this way has also had a positive effect on the inner workings of my body/cortisol production. I’ll also find out if/when a 4th surgery is necessary, and if it is, I’ll hopefully schedule it for February or March of this year. Can’t.wait.
I’m not going to push my eating habits on others, but there is something to be said for compassionate consumption. But with everything in life, I truly believe to each their own, especially if it makes you happy :)
Kicking Cushing’s To The Curb,
Email or Facebook me if you have any questions or want any recipes!
What a strange term to call someone, but that’s in reference to the disease I have. However, I do not like to refer to myself as my disease’s name, so you can still just call me Laura. But around the medical offices, they refer to patients like myself as being “Cushingoid”…one really
nice doctor I once had told me that, “Around the office we say that you guys look like lemons with toothpicks stuck in you; you know, the central obesity with skinny arms and legs!!” NOT my idea of a humorous joke, but luckily, she’s no longer my doctor. Come to find out, I think she was the only one who uses that “jokey term” to describe people like me. Suck it, DQ, as I’m healing and no longer look as Cushingoid as I once did.
I’m posting this image to give you a bit of insight as to what my body has become. Femininity? Yep, that’s gone. Can it come back? I sure as heck hope so. My new body shape is less than desirable, but hey, it happened, and there wasn’t a damn thing I could do to change it at the time. So, here I am:
That’s not actually ME, but rather a depiction of what it is I look like without clothes on. Yikes, right?! Things are gradually getting better; my moon face has decreased, as has my buffalo hump. My face is less red, as are my glorious stretch marks. My gut is not nearly as large as it once was, and it’s only going to keep shrinking from here…With hard work and perseverance, of course…Also, the extreme weight gain is just ONE of the MANY symptoms that Cushing’s has…it’s the one that you can really see. Perhaps my next post will be all the signs/symptoms of CD, not to be confused with cardiovascular disease!
But, as I’ve mentioned before, I can’t exactly change what happened to me, so I’ve just got to roll with it. Some days are better than others, but overall, my life could be way worse. I know I’ll be back to the “old me” in due time, and until then, I’m doing my best to enjoy the ride (in a 2001 Silver Volvo sedan, what what!!). I’m looking forward to 2013 being the year of Cushing’s leaving my life, so I no longer have to be referred to as some alien-sounding person, when the docs say “Cushingoid”. It’s funny, but only to some small extent. Actually, if I didn’t laugh about it, I’d probably go insane, so I’ll take the laughter over insanity any day.
Cheers to a healthier and disease-free year!
Kicking Cushing’s to the Curb,