It's official - I'm going home tomorrow. I have a plane reservation and everything! The scans that I did have scheduled for tomorrow were deemed unnecessary based on the scans I had yesterday and today. So tomorrow's scans have been cancelled and I'm on my way back to KC.
I'll be coming back here to Bethesda on October 21st for pre-op tests, and will have exploratory pituitary surgery on October 25th. I met with the surgeon today and LOVE him. I can't say enough about the caliber of people that are attached to the National Institutes of Health. I hope, if you take nothing else away from my experience here, that everyone now has some knowledge and appreciation for the NIH. If the surgeons cannot locate and remove a tumor in my pituitary gland during the October 25th surgery, then we will proceed with artificially suppressing cortisol production via medication. But we're keeping our fingers crossed that the exploratory surgery will yield results and that I will be on my way to be Cushing's free by November!!
Think good travel thoughts for me on Wednesday, and I'll still be blogging during my time at home. If I have that plate of nachos bigger than my head, there will be a posted picture! I promise!!
Tuesday, September 28, 2010
Scan on McDuff!
Yesterday and today have been filled with scans to look for the little rogue tumor somewhere other than my pituitary gland. So basically I've been scanned stem to stern by the best equipment and equipment operators in the Universe. And what did they find? Nothing. Or should I say, nothing that wasn't supposed to be there.
And now we'll be cutting across 4 lanes of oncoming traffic, taking the next exit, getting off the Ectopic Tumor expressway and back onto Pituitary Gland Avenue...
The next step in my Cushing's saga, as of today, is exploratory pituitary surgery. This has been scheduled for Monday October 25th. So it looks like I'll be discharged this Thursday, and return on October 21st for the surgery. Yes, I'll be returning to Kansas City without a definitive answer to what the source of my Cushing's Syndrome is, but my case is still wide open and being worked on by even more of the best of the best than I started with! How awesome is that?
Did anyone out there know that the pituitary gland is the size of a pea? We are looking for a teeny weeny itty bitty little tumor that might be hidden inside something at the base of the brain that is the size of a pea! And there are people out there that think that is entirely doable! Thank God for them because it boggles my mind.
Thank you to everyone who has sent me cards while I've been here at the NIH. Every single piece of mail I've received has made me smile and helped me get through these weeks back here. And Laura, you nailed it! I am wearing my tiara and waving my wand in your thoroughly Princess worthy honor right now! Thank you!!
And now we'll be cutting across 4 lanes of oncoming traffic, taking the next exit, getting off the Ectopic Tumor expressway and back onto Pituitary Gland Avenue...
The next step in my Cushing's saga, as of today, is exploratory pituitary surgery. This has been scheduled for Monday October 25th. So it looks like I'll be discharged this Thursday, and return on October 21st for the surgery. Yes, I'll be returning to Kansas City without a definitive answer to what the source of my Cushing's Syndrome is, but my case is still wide open and being worked on by even more of the best of the best than I started with! How awesome is that?
Did anyone out there know that the pituitary gland is the size of a pea? We are looking for a teeny weeny itty bitty little tumor that might be hidden inside something at the base of the brain that is the size of a pea! And there are people out there that think that is entirely doable! Thank God for them because it boggles my mind.
Thank you to everyone who has sent me cards while I've been here at the NIH. Every single piece of mail I've received has made me smile and helped me get through these weeks back here. And Laura, you nailed it! I am wearing my tiara and waving my wand in your thoroughly Princess worthy honor right now! Thank you!!
Monday, September 27, 2010
Baseball, football and the Giants...oh my!
I'd love to say that Keith and I continued our exploration of the area on Sunday by heading into Washington DC and touring the heck out of the place. I'd love to say that but I'd be a big fat liar. Saturday's walking excursion in Bethesda wore me out fairly profoundly and I was down for the count on Sunday. Good thing this was a Sunday in September in America! Keith and I spent the day watching football, baseball and, as luck would have it, the Giants! Life is so good sometimes it's hard to fathom!
So there is no travel log. No pictures. No interesting anecdotes about history or the state of American tourists wearing black socks with their sandals. There was, however, a most fabulous and appreciated day spent between two people who love each other very much, and who needed, more than anyone could possibly know, a quiet day together.
So there is no travel log. No pictures. No interesting anecdotes about history or the state of American tourists wearing black socks with their sandals. There was, however, a most fabulous and appreciated day spent between two people who love each other very much, and who needed, more than anyone could possibly know, a quiet day together.
Sunday, September 26, 2010
The best latte EVER!!
I must admit, when you're being poked and prodded, tested and blood let, wheeled and moved around a hospital all day every day, you look forward to the little things that may bring a bit of normalcy to your life. In my case, I have been craving a Starbucks. Perhaps craving isn't the right word. LIVING FOR might be a little bit more appropriate verbage to use. Needless to say, there is no Starbucks on the NIH campus, but with Keith visiting for the weekend, I planned to find one of the 4 venues located in Bethesda and drink up!
Saturday afternoon, after yet another 24 hour pee-in-the-jug test was over, we ventured down to the metro stop and into Bethesda. Thanks to the internets, smart phone, and google, Keith was able to locate our hard target. It took a bit of walking, which, for me these days, can be perilous. But a mission I was on and there was no deterring me from the task at hand.
It was a beautiful day in Bethesda and we enjoyed the stroll amongst the sidewalk cafes and shops. Lots of people, dogs, bikes and normal. I didn't realize how long it's been since I was amongst normal, and I got filled up with it yesterday. Once we got to the appointed Starbucks, the Fabulous Pink Cane and I plopped in a signature purple velvet cushy chair while Keith ordered. Never had I anticipated the wonderful goodness of a Venti/decaf/soy/skinny vanilla latte to the degree I was while waiting the barrista to concoct it. And then it arrived...
The skies parted, the angels sang, and it was good.
We eventually made our way back to the metro, and back to the NIH where I was pooped and done for the day. Keith and I had dinner and turned in early. Did I mention that the latte was GOOD???
Normal. Good.
Saturday afternoon, after yet another 24 hour pee-in-the-jug test was over, we ventured down to the metro stop and into Bethesda. Thanks to the internets, smart phone, and google, Keith was able to locate our hard target. It took a bit of walking, which, for me these days, can be perilous. But a mission I was on and there was no deterring me from the task at hand.
It was a beautiful day in Bethesda and we enjoyed the stroll amongst the sidewalk cafes and shops. Lots of people, dogs, bikes and normal. I didn't realize how long it's been since I was amongst normal, and I got filled up with it yesterday. Once we got to the appointed Starbucks, the Fabulous Pink Cane and I plopped in a signature purple velvet cushy chair while Keith ordered. Never had I anticipated the wonderful goodness of a Venti/decaf/soy/skinny vanilla latte to the degree I was while waiting the barrista to concoct it. And then it arrived...
We eventually made our way back to the metro, and back to the NIH where I was pooped and done for the day. Keith and I had dinner and turned in early. Did I mention that the latte was GOOD???
Normal. Good.
Saturday, September 25, 2010
This round's on me!
Banana barium smoothies for everybody! The breakfast of Princesses scheduled for morning CT scans of the neck, chest abdomen and pelvis these days. All the rage really. And, I must say, put it in a coconut shell, add a paper parasol (and maybe some Captain Morgan), play some reggae in the background and it might be a drink you'd pay for on vacation! Too optimistic? Maybe so, but it wasn't that bad.
Yesterday was filled with scans looking for the ectopic tumor. Lots of being injected and going in, staying in, and coming out of human sized tubes. MRI's and CT scans are boring, but necessary. The more they are scanning, the longer you stay in. So I burrowed in, hunkered down, went to my happy place on the beach (with a drink in a coconut shell - hold the barium!), and hung out. The only conclusion I could come to is that I need a trip to a real beach with a real drink real soon...
After meeting with my gaggle of Medical Professionals yesterday, I can safely iterate that we still have no definitive information on where the tumor is that is throwing my system into disarray. Ectopic or pituitary. So we are scanning for ectopic possibilities, and trying to line up exploratory pituitary surgery with the best pituitary poker around. Sadly he's not here every day, so is not at the Princess's beck and call. I know, I find that hard to believe too, but it's true. Worst case I finish scans middle to end of next week, and, if nothing is found, go back home. I would then return when the pituitary surgeon is available to do the exploratory surgery. Best case scenario is that the surgeon is available next week, he finds something, takes it out, and we start on a long recovery. Or one of the scans next week finds something, someone takes it out, and recovery starts. Either way, did I mention recovery?
Keith is here this weekend. Yippee! This afternoon we are going to try to go into Bethesda and hang out. A little normal is a good thing. It's been a while since I've had it. Take a moment today to appreciate your normal, whatever that is!!
Yesterday was filled with scans looking for the ectopic tumor. Lots of being injected and going in, staying in, and coming out of human sized tubes. MRI's and CT scans are boring, but necessary. The more they are scanning, the longer you stay in. So I burrowed in, hunkered down, went to my happy place on the beach (with a drink in a coconut shell - hold the barium!), and hung out. The only conclusion I could come to is that I need a trip to a real beach with a real drink real soon...
After meeting with my gaggle of Medical Professionals yesterday, I can safely iterate that we still have no definitive information on where the tumor is that is throwing my system into disarray. Ectopic or pituitary. So we are scanning for ectopic possibilities, and trying to line up exploratory pituitary surgery with the best pituitary poker around. Sadly he's not here every day, so is not at the Princess's beck and call. I know, I find that hard to believe too, but it's true. Worst case I finish scans middle to end of next week, and, if nothing is found, go back home. I would then return when the pituitary surgeon is available to do the exploratory surgery. Best case scenario is that the surgeon is available next week, he finds something, takes it out, and we start on a long recovery. Or one of the scans next week finds something, someone takes it out, and recovery starts. Either way, did I mention recovery?
Keith is here this weekend. Yippee! This afternoon we are going to try to go into Bethesda and hang out. A little normal is a good thing. It's been a while since I've had it. Take a moment today to appreciate your normal, whatever that is!!
Thursday, September 23, 2010
Right turn Clyde!
Whoop, whoop, whoop! We're changing course! Abandon ship! Oh, wait, scratch that. Don't abandon ship completely, just get on the other ship, but be ready to return to the first ship at any second! No pressure...
Perhaps a bit more explanation is needed...
The results of the jugular probing yesterday did not yield results that would totally confirm a pituitary basis for my Cortisol production. I can't really explain why, but I have a spreadsheet!! And those of you who have worked with me know how much I love a good spreadsheet! Anyhoo, as of this morning, the search for an ectopic (rogue) tumor somewhere in my body is back on. So tomorrow starts with a high power CT scan of my neck, chest, abdomen and pelvis replete with injected dye. I finish up at 6pm tomorrow evening with a 1.5times neck and chest MRI.
Odds are that an ectopic tumor will be somewhere in the lung area. But odds are not necessarily applicable to me and my Cushing's. Other people, yes. Me, not so much. So the staff here will use their turbo, amazing, not available anywhere else equipment and start on the hunt for the little bugger...tomorrow...
Tune in on Monday - we may be charting a new course by then! Life is never dull in the world of the Princess!
Perhaps a bit more explanation is needed...
The results of the jugular probing yesterday did not yield results that would totally confirm a pituitary basis for my Cortisol production. I can't really explain why, but I have a spreadsheet!! And those of you who have worked with me know how much I love a good spreadsheet! Anyhoo, as of this morning, the search for an ectopic (rogue) tumor somewhere in my body is back on. So tomorrow starts with a high power CT scan of my neck, chest, abdomen and pelvis replete with injected dye. I finish up at 6pm tomorrow evening with a 1.5times neck and chest MRI.
Odds are that an ectopic tumor will be somewhere in the lung area. But odds are not necessarily applicable to me and my Cushing's. Other people, yes. Me, not so much. So the staff here will use their turbo, amazing, not available anywhere else equipment and start on the hunt for the little bugger...tomorrow...
Tune in on Monday - we may be charting a new course by then! Life is never dull in the world of the Princess!
Go for the jugular!
Yesterday's procedure to gather draining pituitary goo from my jugular veins went great. Well, not great like "What should we do today? How about shoving catheters into our jugulars and pull out stuff?", but still, good.
I was on call for the procedure, so it was another morning of hurry up and wait. And don't eat anything. Nothing at all. Have you met me? As visions of nachos danced in my head, I hung out, not wanting to get too far from the room because that's the very moment I would get the call that the procedure is on...NOW...
The call came at about 12:30 and I was on the table by 1:15. Moving at the speed of Carol if I may say. Catheters were inserted through both sides of my groin, just as they were last Friday when they explored my pituitary gland, and driven up through the arteries into my jugular veins. To no one's surprise at this point, my arteries are dainty and the Doctor had some bobbing and weaving to do on the drive up to my neck and head. He waved at Herb, my right hip implant, on the way up (Herb says "hi" by the way). There was a little discomfort as the catheters were running around in my head - the area behind my left ear was particularly put out by the house guest. But the most fabulous nurses gave me a little happy juice through my IV and I was able to ignore the sensation in my head. Other than that, there was no anesthesia or pain medication involved. Can you even believe that? Pretty amazing if you ask me. And it is so much easier on my system not having to deal with all those chemicals.
Dr. Chang eventually got his samples of my pituitary goo, drawn at specific intervals, after chemicals were injected. And boom - done! Amazing! Then back in my room by 3:30, flat on my back, no moving until 5:30, and dinner ordered at 5:31. Did you maybe think I was STARVING at this point?
After wolfing down dinner, I was off to the MRI department for a spinal scan to see if there is any additional reason for my left foot flop. By the time I fell into my happy little hospital bed last night I was pretty pooped.
Today starts in a little bit with a Cardiac CT scan with injected dye to see if my heart has been effected by the Cushing's. There is a good probability that it has, but based on my normal diet and exercise habits, maybe not. Again, I can't possibly be satisfied with taking the same road that everyone else goes down! Go figure...After the Cardiac CT, I'll be on hold until I hear from my gaggle of medical professionals. They need to add the results from yesterday to all the test results we have so far and hopefully find something that correlates with something else. We are also waiting for feedback from the pituitary surgeon on not only what his opinion is with my case, but when he is able to do exploratory surgery to look at the small "red zone" that showed up on the pituitary MRI I had last week. I plan to get out for a walk this afternoon, and maybe even do my laundry! Woo-hoo! Excitement abounds here at Medical Freak Camp!
I was on call for the procedure, so it was another morning of hurry up and wait. And don't eat anything. Nothing at all. Have you met me? As visions of nachos danced in my head, I hung out, not wanting to get too far from the room because that's the very moment I would get the call that the procedure is on...NOW...
The call came at about 12:30 and I was on the table by 1:15. Moving at the speed of Carol if I may say. Catheters were inserted through both sides of my groin, just as they were last Friday when they explored my pituitary gland, and driven up through the arteries into my jugular veins. To no one's surprise at this point, my arteries are dainty and the Doctor had some bobbing and weaving to do on the drive up to my neck and head. He waved at Herb, my right hip implant, on the way up (Herb says "hi" by the way). There was a little discomfort as the catheters were running around in my head - the area behind my left ear was particularly put out by the house guest. But the most fabulous nurses gave me a little happy juice through my IV and I was able to ignore the sensation in my head. Other than that, there was no anesthesia or pain medication involved. Can you even believe that? Pretty amazing if you ask me. And it is so much easier on my system not having to deal with all those chemicals.
Dr. Chang eventually got his samples of my pituitary goo, drawn at specific intervals, after chemicals were injected. And boom - done! Amazing! Then back in my room by 3:30, flat on my back, no moving until 5:30, and dinner ordered at 5:31. Did you maybe think I was STARVING at this point?
After wolfing down dinner, I was off to the MRI department for a spinal scan to see if there is any additional reason for my left foot flop. By the time I fell into my happy little hospital bed last night I was pretty pooped.
Today starts in a little bit with a Cardiac CT scan with injected dye to see if my heart has been effected by the Cushing's. There is a good probability that it has, but based on my normal diet and exercise habits, maybe not. Again, I can't possibly be satisfied with taking the same road that everyone else goes down! Go figure...After the Cardiac CT, I'll be on hold until I hear from my gaggle of medical professionals. They need to add the results from yesterday to all the test results we have so far and hopefully find something that correlates with something else. We are also waiting for feedback from the pituitary surgeon on not only what his opinion is with my case, but when he is able to do exploratory surgery to look at the small "red zone" that showed up on the pituitary MRI I had last week. I plan to get out for a walk this afternoon, and maybe even do my laundry! Woo-hoo! Excitement abounds here at Medical Freak Camp!
Wednesday, September 22, 2010
Ch...ch...ch...changes.....
Whence last we spoke my life here at the NIH Clinical Center had been thrown up in the air and we were waiting for the pieces to fall where they may. It is in no way raining a revised schedule with definitive answers, but perhaps we can say a light mist has broken out.
This morning holds one of two fun activities for the Princess: a) radioactive cardiac CT scan, or 2) jugular test to gather and analyze the goo draining from my pituitary. The jugular test is, of course, far more invasive, but it will give us yet another piece of information to judge whether or not the pituitary is indeed my problem. As I mentioned in an earlier post, the veins into my pituitary are quite "dainty" and Dr. Chang, who performed the IPSS probe into my pituitary on Friday, couldn't get the catheters all the way into the areas he wanted. So analyzing what is draining from the pituitary is the next best thing. The goo drains through the jugular, so that's where he needs to go.
If we can't get that pulled together for today (Dr. Nieman, the head hoo-ha of my Gaggle of Doctors and the best around, only made the call to go forward with the procedure last night), it will probably go forward tomorrow. That would leave me with the cardiac CT scan this morning and a cardiac and chest/abdomen/pelvis MRI late this afternoon. Cushing's can lead to buildup of bad things in the heart, so the team is checking on that in addition to looking for a tumor somewhere else while the MRI is being done. Efficient, huh?
The only bad news in all this testing fabulocity is that I can't have any FOOD!! I have to fast for all these particular tests, and I gotta tell you the hardest part is not being able to eat. Or knowing when I will be able to. Oh well, I'm sure I'll be able to make up for that with a plate of nachos bigger than my head after I get discharged from Medical Freak Camp so I won't get my knickers in a knot over it.
So that's where we stand. I'm using my relaxation techniques to stay calm, cool and collected while my treatment plan gets whirled around in a medical blender. I don't know if I'll get outside today for a walk, but I'm going to try. You all are charged with getting outside yourselves if possible and smelling a rose, appreciating the scenery and smiling. Always smile and be fabulous!!
This morning holds one of two fun activities for the Princess: a) radioactive cardiac CT scan, or 2) jugular test to gather and analyze the goo draining from my pituitary. The jugular test is, of course, far more invasive, but it will give us yet another piece of information to judge whether or not the pituitary is indeed my problem. As I mentioned in an earlier post, the veins into my pituitary are quite "dainty" and Dr. Chang, who performed the IPSS probe into my pituitary on Friday, couldn't get the catheters all the way into the areas he wanted. So analyzing what is draining from the pituitary is the next best thing. The goo drains through the jugular, so that's where he needs to go.
If we can't get that pulled together for today (Dr. Nieman, the head hoo-ha of my Gaggle of Doctors and the best around, only made the call to go forward with the procedure last night), it will probably go forward tomorrow. That would leave me with the cardiac CT scan this morning and a cardiac and chest/abdomen/pelvis MRI late this afternoon. Cushing's can lead to buildup of bad things in the heart, so the team is checking on that in addition to looking for a tumor somewhere else while the MRI is being done. Efficient, huh?
The only bad news in all this testing fabulocity is that I can't have any FOOD!! I have to fast for all these particular tests, and I gotta tell you the hardest part is not being able to eat. Or knowing when I will be able to. Oh well, I'm sure I'll be able to make up for that with a plate of nachos bigger than my head after I get discharged from Medical Freak Camp so I won't get my knickers in a knot over it.
So that's where we stand. I'm using my relaxation techniques to stay calm, cool and collected while my treatment plan gets whirled around in a medical blender. I don't know if I'll get outside today for a walk, but I'm going to try. You all are charged with getting outside yourselves if possible and smelling a rose, appreciating the scenery and smiling. Always smile and be fabulous!!
Monday, September 20, 2010
The best laid plans of lab rats and men...
Today has been one of those days that is always presented as "character building". It was also one of those days on which the person who has about as much "character" as she can stand at this point, had to use every tool in the arsenal to keep the top of her head from blowing off...
Today was supposed to include radioactive injections and scans to start looking in earnest for the rogue tumor that we all were thinking was the root of my Cortisol producing problem. However, when I got down to the Nuclear Medicine department for my injection, I was informed that the test had been cancelled. So back upstairs I went and met up with one of my gaggle of Doctors. Dr. Neary informed me that based on the test results from the weekend, in conjunction with all the tests from last week, the team was not ready to proceed down the Ectopic (rogue in my book) tumor route. While none of the test results we have gotten so far definitively proves my problem lies in the pituitary gland, all of them put together makes the team lean toward that conclusion. To save me from the radiation and perhaps needless tests, the scans for today and tomorrow were cancelled.
As if the whiplash inducing change of direction wasn't enough, a new path to take in that direction still needed to be formulated. So when my gaggle of Doctors came in to discuss what that path would be, my head was spinning. I won't bore you with the tests, other Doctors/surgeons, time lines, and possibilities that we discussed. Suffice it to say each member of my star studded team is all over a piece of this mystery. But as of this evening, I don't have any definitive plan for anything.
Tomorrow morning I have a multiple draw blood test that should verify (or not) the results of a test I had last week that came back inconclusive and give us another pituitary indicator (or not). Hopefully by the time they get the results back from that test (the beauty of the NIH is that we could have results before noon) the path will be formulated and the results will just confirm it. In any case, I assume tomorrow at some point, I'll know what's going on.
Did I mention I'm just trying to go with the flow here? Oh, and I have about as much "character" as I can take at this point?
This morning after having the schedule and plan totally thrown out the window, I went for a long walk around the campus. The weather is still beautiful and it was the best anxiety management tool I could have used. The rest of the day was filled with physical therapy, a visit to the library, meals, vitals, reading and a nap. And now the best tool of all - the 49ers are on Monday Night Football!
Tomorrow should bring more answers which I shall pass along. For now, send positive vibes and good anxiety reducing thoughts. One request: NO CHARACTER BUILDING!!
Today was supposed to include radioactive injections and scans to start looking in earnest for the rogue tumor that we all were thinking was the root of my Cortisol producing problem. However, when I got down to the Nuclear Medicine department for my injection, I was informed that the test had been cancelled. So back upstairs I went and met up with one of my gaggle of Doctors. Dr. Neary informed me that based on the test results from the weekend, in conjunction with all the tests from last week, the team was not ready to proceed down the Ectopic (rogue in my book) tumor route. While none of the test results we have gotten so far definitively proves my problem lies in the pituitary gland, all of them put together makes the team lean toward that conclusion. To save me from the radiation and perhaps needless tests, the scans for today and tomorrow were cancelled.
As if the whiplash inducing change of direction wasn't enough, a new path to take in that direction still needed to be formulated. So when my gaggle of Doctors came in to discuss what that path would be, my head was spinning. I won't bore you with the tests, other Doctors/surgeons, time lines, and possibilities that we discussed. Suffice it to say each member of my star studded team is all over a piece of this mystery. But as of this evening, I don't have any definitive plan for anything.
Tomorrow morning I have a multiple draw blood test that should verify (or not) the results of a test I had last week that came back inconclusive and give us another pituitary indicator (or not). Hopefully by the time they get the results back from that test (the beauty of the NIH is that we could have results before noon) the path will be formulated and the results will just confirm it. In any case, I assume tomorrow at some point, I'll know what's going on.
Did I mention I'm just trying to go with the flow here? Oh, and I have about as much "character" as I can take at this point?
This morning after having the schedule and plan totally thrown out the window, I went for a long walk around the campus. The weather is still beautiful and it was the best anxiety management tool I could have used. The rest of the day was filled with physical therapy, a visit to the library, meals, vitals, reading and a nap. And now the best tool of all - the 49ers are on Monday Night Football!
Tomorrow should bring more answers which I shall pass along. For now, send positive vibes and good anxiety reducing thoughts. One request: NO CHARACTER BUILDING!!
Sunday, September 19, 2010
Stop and smell 'em...
After this morning's blood draws, breakfast, and 2 hour post-breakfast blood sugar check, I made a break for it. The weather was beautiful here today. Not too hot, not too humid, and sunny. Perfect for a slightly unsteady walk for the Fabulous Pink Cane and I. My goal was to find the Medical Center metro stop. Based on the NIH campus map, I figured it would be a good, challenging (given my current condition) excursion. It took about 1/2 hour each way, and while I was dripping with sweat and pretty pooped by the time I got back to the Clinical Center, I had a smile on my face the whole time.
The NIH campus is like a college campus with security on steroids. The entire campus is fenced, but it's so big that you don't even notice it from the inside. Here is a picture of the exit of the complex that made me think for a minute that once you get into this place, they may not let you out!
You pass through a heavy security checkpoint to get into the campus, but once you're in, it's just like a small college. Buildings of every style, each named after some generous patron, with open space or parking in between. The best building I passed on the way to the metro stop was this one:
This is a Government institution, but there are remarkably few industrial grey buildings here. I suppose the people who give the money to erect the buildings and support the research that goes on here have the power to say "there will be no ugly!". It makes it a very nice environment to feel like crap in. It's nurturing from top to bottom.
So the Fabulous Pink Cane and I made it to the metro stop (it was actually where I thought it was...and I followed the very clear directional signs along the way...) as planned, and after a little sit down, hoofed it back to the Clinical Center. Of course, we did take a moment to smell the roses...
We hope you took the time to do the same...
The NIH campus is like a college campus with security on steroids. The entire campus is fenced, but it's so big that you don't even notice it from the inside. Here is a picture of the exit of the complex that made me think for a minute that once you get into this place, they may not let you out!
So the Fabulous Pink Cane and I made it to the metro stop (it was actually where I thought it was...and I followed the very clear directional signs along the way...) as planned, and after a little sit down, hoofed it back to the Clinical Center. Of course, we did take a moment to smell the roses...
Haiku...haiku...from you and you and you....
You've all been waiting for it, and now it's time for me to deliver! These short bits of creativity from you really brightened my mood this week. Thank you to all who played along with my little haiku game!
Something lurking there
Let's hope they do discover
A rogue to repair.
You are The Princess,
Something lurking there
Let's hope they do discover
A rogue to repair.
Carol went away
to find a tumor they say,
and be back soon, yea!
Erin and Alvin,
miss mom being home right now,
Keith will have to do....
Friends from college days,
Fun, Laughter, closeness remain,
Years ahead... Oscars... cats
Fun, Laughter, closeness remain,
Years ahead... Oscars... cats
You are The Princess,
You will prevail over this.
Keith, dogs, friends, healthy.
Honey, can you help ...
Sigh, you are not here with me
Get well. Come home. Love.
Ruff, ruff, ruff, ruff, grrrr
Wag, ruff, wag, ruff, wag, ruff, wag
Ruff, ruff, ruff, ruff, lick
(Composed by Erin and Alvin, translation provided by Keith)
I am really glad
you found the coffee bar blow
For it'll perk you up!
You guys are SO AWESOME!!
Sigh, you are not here with me
Get well. Come home. Love.
Ruff, ruff, ruff, ruff, grrrr
Wag, ruff, wag, ruff, wag, ruff, wag
Ruff, ruff, ruff, ruff, lick
(Composed by Erin and Alvin, translation provided by Keith)
I am really glad
you found the coffee bar blow
For it'll perk you up!
You guys are SO AWESOME!!
Saturday, September 18, 2010
Rollin', rollin', rollin'...
It wouldn't be a day at the NIH Clinical Center without a morning blood draw. But as soon as they got their quota to test my unstimulated cortisol/ACTH level, the day was my own! Woo-hoo! No pokes, sticks, scans or peeing in a jug! It's gonna be a good day...
This morning's exciting activities included doing a load of laundry, a trip to the library upstairs for a weekend reading selection, a walk outside, oh, and taking a bucketfull of morning medication. But it all paled in anticipation of the 1:00 bus tour of Washington DC! If you didn't know just how big a Dork I am, you'll soon find out.
I don't know what it is about the thought of seeing the sights of DC, but I've been looking forward to it since I found out I was coming here. Even if it's through the windows of a cruising shuttle bus. There are so many moments in the history of this country that are commemorated here it overwhelms me. To experience any of them is to immerse oneself in the amazing past of the United States. Today was a cursory view. A top down, if you will, of buildings, monuments and areas. And I was glued to my window.
We did make a stop to exit the shuttle bus at the Lincoln memorial. Wow.
Once the Fabulous Pink Cane and I made it up all the stairs at the Lincoln Memorial (there are alot of them, by the way) I just stood in the corner and took in Abe's aura. I can't imagine what it took him to believe that keeping this Country together was worth fighting and dying for. A level of integrity that distinguishes the extrordinary individuals from the merely ordinary. In an area to the right of this picture, is Lincoln's 2nd innaugural address carved into the wall. I stood and read the words, eloquently written by Abe or one of his trusty speech writer minions, and was in awe of the enormity of both the time and the prose.
After basking in the world of Lincoln for a few more minutes, I ventured back down the steps and perched with a view of the Washington Memorial.
The weather was beautiful, the people were interesting and, quite frankly, it was just great being outside taking it all in. I hate to admit how much this little historical jaunt sapped my strength, but by the time we shuttled back to the NIH, I was ready for a nap!
This morning's exciting activities included doing a load of laundry, a trip to the library upstairs for a weekend reading selection, a walk outside, oh, and taking a bucketfull of morning medication. But it all paled in anticipation of the 1:00 bus tour of Washington DC! If you didn't know just how big a Dork I am, you'll soon find out.
I don't know what it is about the thought of seeing the sights of DC, but I've been looking forward to it since I found out I was coming here. Even if it's through the windows of a cruising shuttle bus. There are so many moments in the history of this country that are commemorated here it overwhelms me. To experience any of them is to immerse oneself in the amazing past of the United States. Today was a cursory view. A top down, if you will, of buildings, monuments and areas. And I was glued to my window.
We did make a stop to exit the shuttle bus at the Lincoln memorial. Wow.
After basking in the world of Lincoln for a few more minutes, I ventured back down the steps and perched with a view of the Washington Memorial.
5th Floor - Cushing's Princess, men's furnishings, ladies lingere...
On the eve of my first complete week here at the NIH Clinical Center all I have to say is "WOW, what a week!" But let's get up to speed with the events of yesterday.
Friday started (if you don't count the 2:00am blood draw) at 7:00am with more vials of blood being taken for neurological tests. According to the neuro Docs, we are "hoping to find nothing". I can almost guarantee that will be the case...
After that, I was on call for the major IPSS (the one we went to St. Louis to have in early June) test. So I sponge bathed, got my hospital gown on, and waited. My number came up at about 11:00am and then things started to move at the speed of sound. An excort with a wheel chair was sent for, papers and records were arranged, calls were made. DC was mobilized! I got wheeled downstairs to the 1st floor nuclear medicine department where Dr. Chang, the performing physician, discussed the procedure with me and got me up to speed with what they were going to do. Good thing I'd had it done before! And I'm such a dork I just kept saying "how cool!". Then I got wheeled into the big room by Steve, a very, very tall nurse. Sorry, but these are the things I notice. The nurses and Dr. Chang got me all prepped, situated, IV'd, and off we went. I was awake during the procedure, but had some loopy juice running through my system. And I know that more than a few of you reading this right now are saying to yourself "how can you tell?". Ha, Ha, very funny.
The procedure itself involved running catheters through veins in each groin up to my pituitary and getting them into the base. Then they take samples, inject goo, and take more samples at specific timed intervals to measure the goo's effect on cortisol and ACTH production. blah, blah, blah. Have your eyes glazed over yet? It is a pretty cool process just because I'm amazed it can be done. But we learned that I have tiny veins going into my pituitary, so they couldn't shove the catheters in as far as they wanted. We will have to see if that is a variable that comes back to haunt us as we get further down the diagnostic road...like on Tuesday! Anyhoo, unlike when I had the test done in St. Louis, my doctor had the results of the test to go over with me by 6:00pm, and they had already had a team meeting on them before Dr. Neary came to see me. This is just another reason I am such a lucky girl to be here.
Bottom line is that this test neither ruled in nor ruled out the pituitary as the cause of my Cushing's. The results were in the negative range, but close enough to the positive cut off that the team was not ready to call it one way or another. All of these tests build on each other and are taken as bits and pieces in a big puzzle. The gaggle of medical professionals working on my case has already been sucked into the mystery...and that's a good thing.
If things go according to plan for me today, I'll be taking my bus tour of Washington DC at 1:00pm. It's an activity organized through the Recreational Therapy department here at the NIH Clinical Center and I'm really looking forward to it. Not only have I never been a tourist in DC, but it'll be fun just to get out of here for a few hours and forget about being poked, prodded and scanned for a while. Not that I'm complaining!! I will hopefully be able to share my outing with you here - I'll try to take copious pictures!
Haikus are coming!!
Friday started (if you don't count the 2:00am blood draw) at 7:00am with more vials of blood being taken for neurological tests. According to the neuro Docs, we are "hoping to find nothing". I can almost guarantee that will be the case...
After that, I was on call for the major IPSS (the one we went to St. Louis to have in early June) test. So I sponge bathed, got my hospital gown on, and waited. My number came up at about 11:00am and then things started to move at the speed of sound. An excort with a wheel chair was sent for, papers and records were arranged, calls were made. DC was mobilized! I got wheeled downstairs to the 1st floor nuclear medicine department where Dr. Chang, the performing physician, discussed the procedure with me and got me up to speed with what they were going to do. Good thing I'd had it done before! And I'm such a dork I just kept saying "how cool!". Then I got wheeled into the big room by Steve, a very, very tall nurse. Sorry, but these are the things I notice. The nurses and Dr. Chang got me all prepped, situated, IV'd, and off we went. I was awake during the procedure, but had some loopy juice running through my system. And I know that more than a few of you reading this right now are saying to yourself "how can you tell?". Ha, Ha, very funny.
The procedure itself involved running catheters through veins in each groin up to my pituitary and getting them into the base. Then they take samples, inject goo, and take more samples at specific timed intervals to measure the goo's effect on cortisol and ACTH production. blah, blah, blah. Have your eyes glazed over yet? It is a pretty cool process just because I'm amazed it can be done. But we learned that I have tiny veins going into my pituitary, so they couldn't shove the catheters in as far as they wanted. We will have to see if that is a variable that comes back to haunt us as we get further down the diagnostic road...like on Tuesday! Anyhoo, unlike when I had the test done in St. Louis, my doctor had the results of the test to go over with me by 6:00pm, and they had already had a team meeting on them before Dr. Neary came to see me. This is just another reason I am such a lucky girl to be here.
Bottom line is that this test neither ruled in nor ruled out the pituitary as the cause of my Cushing's. The results were in the negative range, but close enough to the positive cut off that the team was not ready to call it one way or another. All of these tests build on each other and are taken as bits and pieces in a big puzzle. The gaggle of medical professionals working on my case has already been sucked into the mystery...and that's a good thing.
If things go according to plan for me today, I'll be taking my bus tour of Washington DC at 1:00pm. It's an activity organized through the Recreational Therapy department here at the NIH Clinical Center and I'm really looking forward to it. Not only have I never been a tourist in DC, but it'll be fun just to get out of here for a few hours and forget about being poked, prodded and scanned for a while. Not that I'm complaining!! I will hopefully be able to share my outing with you here - I'll try to take copious pictures!
Haikus are coming!!
Thursday, September 16, 2010
Is that a jug in your fridge, or are you just happy to see me?
Those of you who have not been in my Cushing's loop since April have not had the chance for me to regale you with the ins and outs of the Cortisol hormone measuring 24 hour urine collection test. Let me tell you now, no refrigerator has been used to it's fullest potential until it holds a big brown jug of pee on the door next to the milk. And no, I'm not kidding. I've had to do this several times in Kansas City - saving 24 hours worth of pee in a jug in the fridge, then it gets sent off to the Mayo Clinic to be analyzed. They do things a little different here, like split my "deposit" in two and analyze it here, but basically these two pictures describe my day:
This is actually the second time I've done this since I've been here. Monday was a pee in the jug day too. I am not complaining mind you. Really, in the scheme of invasive testing, peeing in a jug is a walk in the park! But I didn't get very far away from the fridge today.
It was a long day of testing at Medical Freak Camp today. It started with blood draws at 11:30pm and midnight last night, and continued with the am contrast to those blood draws at 6 and 6:30 am this morning. Then, just because we were on a roll with the blood letting, 6:00am also started research test blood draws every 4 hours all day. Those will end at 2:00am tomorrow (Friday) morning. I also had an additional bone scan.
Today also brought the official diagnosis of Diabetes. For those of you who haven't read up on your Cushing's symptoms and fun, Diabetes and bone loss are just 2 of the many medical wheels that can fall off your cart when your Cortisol goes ape-crap wild. My gaggle of medical professionals are of the mindset that my body's inability to metabolize glucose is totally Cushing's related and if we can get it under control, my system will go back to metabolizing normally. And so far so good on the bones. The bad news is that I'm now on a double restricted diet during my stay here at the NIH Clinical Center. Low sodium (blood pressure is still too high and yes, that's a Cushing's symptom too) and diabetic. Do a venn diagram on those two diets and the intersection is BLAND!
Up tomorrow on Carol's dance card is the infamous Petrosal Sinus Sampling. I had this test done in St.Louis back in June...or was it May? It all runs together after a while. Anyway, it's a very cool test where they run a catheter up to the pituitary through veins in your groin and through the heart. This test will hopefully rule in or rule out the pituitary as the source of my problem. The results of the St.Louis IPSS showed that the pituitary was not my problem. We'll see if the same results occur tomorrow. Stay tuned!
Oh, and I also have more blood tests for my gaggle of Neurology doctors to try to rule out some causes of the mysterious drop and lack of control I have over my left foot that is not an attributable symptom of Cushing's. I just wanted to spread the love Baby!
I will hopefully have a collection of fabulous haiku poems up tomorrow. We'll see how the day goes! Keep 'em coming!!
It was a long day of testing at Medical Freak Camp today. It started with blood draws at 11:30pm and midnight last night, and continued with the am contrast to those blood draws at 6 and 6:30 am this morning. Then, just because we were on a roll with the blood letting, 6:00am also started research test blood draws every 4 hours all day. Those will end at 2:00am tomorrow (Friday) morning. I also had an additional bone scan.
Today also brought the official diagnosis of Diabetes. For those of you who haven't read up on your Cushing's symptoms and fun, Diabetes and bone loss are just 2 of the many medical wheels that can fall off your cart when your Cortisol goes ape-crap wild. My gaggle of medical professionals are of the mindset that my body's inability to metabolize glucose is totally Cushing's related and if we can get it under control, my system will go back to metabolizing normally. And so far so good on the bones. The bad news is that I'm now on a double restricted diet during my stay here at the NIH Clinical Center. Low sodium (blood pressure is still too high and yes, that's a Cushing's symptom too) and diabetic. Do a venn diagram on those two diets and the intersection is BLAND!
Up tomorrow on Carol's dance card is the infamous Petrosal Sinus Sampling. I had this test done in St.Louis back in June...or was it May? It all runs together after a while. Anyway, it's a very cool test where they run a catheter up to the pituitary through veins in your groin and through the heart. This test will hopefully rule in or rule out the pituitary as the source of my problem. The results of the St.Louis IPSS showed that the pituitary was not my problem. We'll see if the same results occur tomorrow. Stay tuned!
Oh, and I also have more blood tests for my gaggle of Neurology doctors to try to rule out some causes of the mysterious drop and lack of control I have over my left foot that is not an attributable symptom of Cushing's. I just wanted to spread the love Baby!
I will hopefully have a collection of fabulous haiku poems up tomorrow. We'll see how the day goes! Keep 'em coming!!
Wednesday, September 15, 2010
Go rest young man...
I'm not sure whether you have noticed or not, but I do not relax well. I never have. Relaxation is laziness. Resting is wasted time. I could be doing something "productive". I advocate resting and relaxing for other people. I totally realize that it is necessary to keep the body's batteries charged in order to keep the machine running. And yet for me, for some reason, it is not ok. I've never had to accept that I wasn't able to do anything I wanted to. I probably should have, but never did. If I tried harder, or maybe just differently, there is nothing I can't do. I may do it slower or much worse than others, but I could still do anything I wanted to do. Now there actually are things I cannot do and that really sucks.
One of the best things about being here at the NIH is the wide variety of research, treatment and interest that goes on here. I am not only in the care of the best Doctors in the world in the field of Endocrinology and Cushing's Syndrome, but also a gaggle of Occupational, Recreational and Physical therapists all engaged in making my fight against the condition a success. This morning was filled with a pituitary MRI complete with dye being pumped into it, and multiple timed blood draws after drinking a bunch of glucose goo. But this afternoon, I was able to focus on the half of my situation I am not any good in handling - accepting and accommodating the limitations that Cushing's has put on my body. I am realizing how much my focus has been on how I'm going to get back to normal after they solve the Cushing's problem (which, since April, I've assumed would be "any day now"...) when it should be how I'm going to get through until they solve it.
Getting back vs. getting through. Getting back is proactive. Proactive is good. Getting through is surrender. Surrender is bad. See where I'm going with this? I have some (ok, alot) of headwork to do.
I had a second meeting with my wonderful Occupational Therapist this afternoon who is helping me with looking at my energy level as a checkbook. My balance is unpredictable these days, but I still can't wait until I'm overdrawn before I make a deposit. It is detrimental to my overall health if I do. Pushing through is not a good option. She is giving me resources on energy conservation, helping me organize what I'm doing to minimize wear and tear on my body, and generally affirming that this piece of the puzzle is just as important to my overall health as the others. My mantra for now is to implement everything I can, work on my mindset, and learn how to accept and accommodate my limitations for as long as I have them. Fran is in for a lot of work with me!
I also had a second meeting with my fabulous Recreational Therapist this afternoon. We took the opportunity to walk around the 1st floor of this Clinical Center building that contains beautiful artwork on the walls, garden atriums, and activity areas as we discussed the importance of meditation, sleep, and holistic healing options. She has given me a great listening tool to help me fall asleep (cortisol tends to disrupt sleep patterns) which I used to great effect last night, scheduled relaxation therapy and massage sessions, and encouraged the appreciation of the art and beauty in the building as I take my walks. Not to mention, I'm signed up for the afternoon bus tour of Washington DC on Saturday!
I'm not sure exactly what my point is here. Just know that this stay at the NIH is the absolute best opportunity anyone could have to heal. Granted, you've got to be in pretty piss poor shape to get into the program, but once you're in, you couldn't be in better hands. I am taking every opportunity, whether it be traditional or non-traditional, put before me to beat this thing called Cushing's and get healthy again. And I'm trying to shift my focus from getting back to getting through. And that's a good thing.
On a completely different note, I have seen some of the best haikus from you guys!!! I have been smiling all day as I read the emails and comments on the blog! You all are awesome! I'm thinking of compiling all the happy little haikus into a post so you revel in the creativity of my family and friends (and dogs) as I am. So keep those haikus coming and I will definitely keep smiling!!
One of the best things about being here at the NIH is the wide variety of research, treatment and interest that goes on here. I am not only in the care of the best Doctors in the world in the field of Endocrinology and Cushing's Syndrome, but also a gaggle of Occupational, Recreational and Physical therapists all engaged in making my fight against the condition a success. This morning was filled with a pituitary MRI complete with dye being pumped into it, and multiple timed blood draws after drinking a bunch of glucose goo. But this afternoon, I was able to focus on the half of my situation I am not any good in handling - accepting and accommodating the limitations that Cushing's has put on my body. I am realizing how much my focus has been on how I'm going to get back to normal after they solve the Cushing's problem (which, since April, I've assumed would be "any day now"...) when it should be how I'm going to get through until they solve it.
Getting back vs. getting through. Getting back is proactive. Proactive is good. Getting through is surrender. Surrender is bad. See where I'm going with this? I have some (ok, alot) of headwork to do.
I had a second meeting with my wonderful Occupational Therapist this afternoon who is helping me with looking at my energy level as a checkbook. My balance is unpredictable these days, but I still can't wait until I'm overdrawn before I make a deposit. It is detrimental to my overall health if I do. Pushing through is not a good option. She is giving me resources on energy conservation, helping me organize what I'm doing to minimize wear and tear on my body, and generally affirming that this piece of the puzzle is just as important to my overall health as the others. My mantra for now is to implement everything I can, work on my mindset, and learn how to accept and accommodate my limitations for as long as I have them. Fran is in for a lot of work with me!
I also had a second meeting with my fabulous Recreational Therapist this afternoon. We took the opportunity to walk around the 1st floor of this Clinical Center building that contains beautiful artwork on the walls, garden atriums, and activity areas as we discussed the importance of meditation, sleep, and holistic healing options. She has given me a great listening tool to help me fall asleep (cortisol tends to disrupt sleep patterns) which I used to great effect last night, scheduled relaxation therapy and massage sessions, and encouraged the appreciation of the art and beauty in the building as I take my walks. Not to mention, I'm signed up for the afternoon bus tour of Washington DC on Saturday!
I'm not sure exactly what my point is here. Just know that this stay at the NIH is the absolute best opportunity anyone could have to heal. Granted, you've got to be in pretty piss poor shape to get into the program, but once you're in, you couldn't be in better hands. I am taking every opportunity, whether it be traditional or non-traditional, put before me to beat this thing called Cushing's and get healthy again. And I'm trying to shift my focus from getting back to getting through. And that's a good thing.
On a completely different note, I have seen some of the best haikus from you guys!!! I have been smiling all day as I read the emails and comments on the blog! You all are awesome! I'm thinking of compiling all the happy little haikus into a post so you revel in the creativity of my family and friends (and dogs) as I am. So keep those haikus coming and I will definitely keep smiling!!
Tuesday, September 14, 2010
Haiku U
I decided to use this blog post to throw a grey matter challenge out to my faithful, and highly intelligent readers. We might as well all have a little fun at my situation's expense. I'm a giver, what can I say??
Let's all get a little creative and create some Haikus! Yee-ha! What's a Haiku you may ask? It's a short poem whose first line is 5 syllables, second line is 7 syllables and third line is 5 syllables. At least that's an easy American translation. Anyhoo, think of it as the Twitter of the poetry world. A way to keep your thoughts short, sweet, and they don't even have to rhyme! What could be better? Here's one I came up with:
I'm off to the East
A tumor we hope they find
So I can Tri more
And here's a good one from Jesse, trusted member of my Village and fellow Dork:
Searching the unknown
What in the heck will they find?
Hopefully something!
Think about it and post them here as comments, or send them to me via email. You will make me smile in between all the medical stuff that I've been tossed in the middle of.
You can send me a card with your Haiku as well. I posted the mailing address for me at the top of the page. I also accept baked goods. Just a thought...
Thank you for indulging me on my Haiku challenge! I'm hoping that it sticks with some of you and I get some good creative poems in my inbox. I have had a long day of tests and evaluations today, none of which I will bore you with. I'm a little pooped truth be told. I did have time to find the coffee bar on the first floor though. I got lost in this maze of a building getting back to my room, but I shall venture out again tomorrow. And you'll hear about it here.
Haiku on!
Let's all get a little creative and create some Haikus! Yee-ha! What's a Haiku you may ask? It's a short poem whose first line is 5 syllables, second line is 7 syllables and third line is 5 syllables. At least that's an easy American translation. Anyhoo, think of it as the Twitter of the poetry world. A way to keep your thoughts short, sweet, and they don't even have to rhyme! What could be better? Here's one I came up with:
I'm off to the East
A tumor we hope they find
So I can Tri more
And here's a good one from Jesse, trusted member of my Village and fellow Dork:
Searching the unknown
What in the heck will they find?
Hopefully something!
Think about it and post them here as comments, or send them to me via email. You will make me smile in between all the medical stuff that I've been tossed in the middle of.
You can send me a card with your Haiku as well. I posted the mailing address for me at the top of the page. I also accept baked goods. Just a thought...
Thank you for indulging me on my Haiku challenge! I'm hoping that it sticks with some of you and I get some good creative poems in my inbox. I have had a long day of tests and evaluations today, none of which I will bore you with. I'm a little pooped truth be told. I did have time to find the coffee bar on the first floor though. I got lost in this maze of a building getting back to my room, but I shall venture out again tomorrow. And you'll hear about it here.
Haiku on!
Monday, September 13, 2010
Did someone order a blood draw???
What else does one do at 6:00 am (5:45 actually, but who's clockwatching?) when at Medical Freak Camp other than fill 8 vials with blood? And I have been off and running ever since. But let me catch you up with yesterday first.
I flew from Kansas City to Baltimore yesterday on a direct Southwest flight that couldn't have gone any smoother. Not like me you say? True, but we'll get to that later. After kissing the babies goodbye at 7:30am-ish, my trusty sherpa/husband drove us to the airport, hauled my bag inside, checked it in and into bag security, and then we sat and enjoyed a lovely cup of Starbucks before I had to go through security. For those of you without metal bits and pieces surgically implanted in your bodies, security at the airport my revolve around your laptop, shoes and terribly expensive face lotion in quart sized zip lock bags. For me it's a full body wand and pat down after letting the TSA agents know I'm going to set off their alarm with my hip implant as I go through their machine. Oh yes, and then I also have the laptop and the shoes. It's all fine, I leave extra time. But on this day, for the first time, I went through the new full body scan machine that they are using in Kansas City. I just stood there with my arms overhead (as the agent and eye level diagram clearly illustrated) and a couple of seconds later I was waved through. It took longer for my backpack, shoes, laptop and fabulous pink cane to go through the x-ray machine! Woo-hoo! I am having a great day so far! I then ventured to the gate agent and got a pre-board sleeve for those of us who need a little extra time. I am using the fabulous pink cane from last summer's hip surgery full time now due to muscle weakness in my legs that make it unsafe for me to navigate unaided. So I was able to get on the plane and settled without holding anyone up and was snoozing before the wheels were up. We even arrived in Baltimore 20 minutes early! And the guy in the seat next to me saved me snacks! I was on a roll! I got my bag, and made it to the door where the shuttle would arrive and take me to the NIH Clinical Center. I double checked with the information desk there and confirmed I was in the right place and the shuttle would arrive in about 45 minutes. I'm starting to think my luck has changed. There is no shoe waiting to drop. It was indeed not all too good to be true...Until the shuttle was late. The shuttle is never late. Runs like clockwork so they say. But on this day, a flat tire was had, and on some level I was relieved. Good thing we got that out of the way. And at least the shuttle was on the way to the airport, not stuck on the rainy expressway with me in it. A cab was called and while it was a long day, I finally arrived at the NIH.
I got checked in, and brought up to the 5th floor unit I will be calling home for the next 3 weeks. The next 2 hours or so was a blur of nurse and doctor evaluations, medication, blood draws, dinner, a tour of the floor, unpacking, getting settled and a slight case of locational panic. This place is huge. Like huge enough to be able to wander around for days and never find your way back to where you started. You won't starve, be bored or, certainly succomb to a disease of any sort, but going MIA is a distinct possibility. I tried not to panic about that and actually got a pretty good night's sleep. Here are pictures of my home away from home including my own biohazard refrigerator!
Today after the morning wake up blood draws, I got the instructions for my 24 hour urine collection test. I have done these before, but they do it a little different here. And I don't have to keep the big brown jug in the kitchen fridgy next to the milk! Then there was nurse evaluation, breakfast, medication, shower, evaluation and interview by my assigned Fellow doctor on the Cushing's team, evaluation/interview with all 4 doctors on the Cushing's team, EKG, chest xray, more peeing into a jug, schedule review, lunch, physical therapy Doctor and Therapist interviews and evaluations, a check by the nurse, and whew, Carol needs a nap!
It's been a busy first day, but the staff here are great. And they have everything under control. Medical tests, procedures, physical therapy, recreation, whatever it is, my needs are getting evaluated and scheduled. I even found the Library on the 7th floor and checked out a book! Tomorrow I shall endeavor to find the 1st floor coffee bar!
So my loyal readers, you are now up to date with all the news from Bethesda. Do not doubt that I am being well taken care of, but still keep those positive thoughts coming.
I flew from Kansas City to Baltimore yesterday on a direct Southwest flight that couldn't have gone any smoother. Not like me you say? True, but we'll get to that later. After kissing the babies goodbye at 7:30am-ish, my trusty sherpa/husband drove us to the airport, hauled my bag inside, checked it in and into bag security, and then we sat and enjoyed a lovely cup of Starbucks before I had to go through security. For those of you without metal bits and pieces surgically implanted in your bodies, security at the airport my revolve around your laptop, shoes and terribly expensive face lotion in quart sized zip lock bags. For me it's a full body wand and pat down after letting the TSA agents know I'm going to set off their alarm with my hip implant as I go through their machine. Oh yes, and then I also have the laptop and the shoes. It's all fine, I leave extra time. But on this day, for the first time, I went through the new full body scan machine that they are using in Kansas City. I just stood there with my arms overhead (as the agent and eye level diagram clearly illustrated) and a couple of seconds later I was waved through. It took longer for my backpack, shoes, laptop and fabulous pink cane to go through the x-ray machine! Woo-hoo! I am having a great day so far! I then ventured to the gate agent and got a pre-board sleeve for those of us who need a little extra time. I am using the fabulous pink cane from last summer's hip surgery full time now due to muscle weakness in my legs that make it unsafe for me to navigate unaided. So I was able to get on the plane and settled without holding anyone up and was snoozing before the wheels were up. We even arrived in Baltimore 20 minutes early! And the guy in the seat next to me saved me snacks! I was on a roll! I got my bag, and made it to the door where the shuttle would arrive and take me to the NIH Clinical Center. I double checked with the information desk there and confirmed I was in the right place and the shuttle would arrive in about 45 minutes. I'm starting to think my luck has changed. There is no shoe waiting to drop. It was indeed not all too good to be true...Until the shuttle was late. The shuttle is never late. Runs like clockwork so they say. But on this day, a flat tire was had, and on some level I was relieved. Good thing we got that out of the way. And at least the shuttle was on the way to the airport, not stuck on the rainy expressway with me in it. A cab was called and while it was a long day, I finally arrived at the NIH.
I got checked in, and brought up to the 5th floor unit I will be calling home for the next 3 weeks. The next 2 hours or so was a blur of nurse and doctor evaluations, medication, blood draws, dinner, a tour of the floor, unpacking, getting settled and a slight case of locational panic. This place is huge. Like huge enough to be able to wander around for days and never find your way back to where you started. You won't starve, be bored or, certainly succomb to a disease of any sort, but going MIA is a distinct possibility. I tried not to panic about that and actually got a pretty good night's sleep. Here are pictures of my home away from home including my own biohazard refrigerator!
It's been a busy first day, but the staff here are great. And they have everything under control. Medical tests, procedures, physical therapy, recreation, whatever it is, my needs are getting evaluated and scheduled. I even found the Library on the 7th floor and checked out a book! Tomorrow I shall endeavor to find the 1st floor coffee bar!
So my loyal readers, you are now up to date with all the news from Bethesda. Do not doubt that I am being well taken care of, but still keep those positive thoughts coming.
Saturday, September 11, 2010
I'll have a side of beef with that side of beef...
What does any BBQ loving Princess do before she leaves Kansas City for a 3 week stay in Maryland? She goes to the best barbeque restaurant located in a gas station (no, I'm not kidding - it really is in a gas station) in the Universe and stuffs her face with sausage, burnt ends, red beans and rice, and crispy seasoned fries. Mmmmmm, good.... This cholesterol fest will definitely hold me over during my visit to the land of crab cakes and partisian politics!
I'm off to the NIH Clinical Center in Bethesda MD tomorrow morning and I can't wait to get the process started. I have received a preliminary schedule of the testing and whatnot they have in store for me over the next 3 weeks, and it seems a little daunting. But boy are they organized back there! I'm going to be in great hands and, while I don't want to get my hopes up too high, I'm confident that this is my best chance to find the root cause of my Cushing's. So I'm throwing the clothes I have that fit in my bag (did I mention that one of the symptoms of Cushing's is uncontrolled weight gain? Yeah, I may have left that out...), and embarking on this adventure with a totally open mind and an amazingly low stress level.
I've been asked whether or not I'm nervous, and I can honestly say that no, I'm really not. What scares me is not stopping the deterioration of my body. The people at the NIH are my best shot at getting my body back to it's normal self. How can I be nervous about that??? Besides, I have all you people rooting for me. And that's a good thing...
So I enjoy my BBQ, pack my bag, and look forward to seeing the sights of DC. Oh, and live as a human lab rat for the next 3 weeks. Yeah, there's that. Funny the opportunities life throws at you sometimes, isn't it? Anyhoo, keep those positive vibes coming and I'll continue to regale you with tales of my adventures. It should be interesting for us all!!
I'm off to the NIH Clinical Center in Bethesda MD tomorrow morning and I can't wait to get the process started. I have received a preliminary schedule of the testing and whatnot they have in store for me over the next 3 weeks, and it seems a little daunting. But boy are they organized back there! I'm going to be in great hands and, while I don't want to get my hopes up too high, I'm confident that this is my best chance to find the root cause of my Cushing's. So I'm throwing the clothes I have that fit in my bag (did I mention that one of the symptoms of Cushing's is uncontrolled weight gain? Yeah, I may have left that out...), and embarking on this adventure with a totally open mind and an amazingly low stress level.
I've been asked whether or not I'm nervous, and I can honestly say that no, I'm really not. What scares me is not stopping the deterioration of my body. The people at the NIH are my best shot at getting my body back to it's normal self. How can I be nervous about that??? Besides, I have all you people rooting for me. And that's a good thing...
So I enjoy my BBQ, pack my bag, and look forward to seeing the sights of DC. Oh, and live as a human lab rat for the next 3 weeks. Yeah, there's that. Funny the opportunities life throws at you sometimes, isn't it? Anyhoo, keep those positive vibes coming and I'll continue to regale you with tales of my adventures. It should be interesting for us all!!
I call your Red Bluff...
In keeping with scheduling myself to the nth degree, I crammed in a trip out to my parent's house in Red Bluff CA last week and boy am I glad I did! After a miserable weather summer here in Kansas City with wilting heat and humidity, I needed a refresher course in "but it's a dry heat". Not to mention the revitalizing sensation of spending a week with the genetic oak tree from which I fell as an acorn...and mom's brownies didn't hurt either. Let's face it - we all needed to see the whites of each other's eyes before I leave for Medical Freak Camp on September 12th. So off to CA I went for a week.
For those of you not familiar with California geography, Red Bluff is about 2 hours due north of Sacramento. And it's hot. Really hot. The good news is that you can ride your bike, and grow flowers year around. The bad news is that during the summer mid-day is NOT at all comfortable. In fact it'll melt you faster than a bucket of water on the Wicked Witch of the West. So we did yard work early in the morning and the evenings and indoor work during the day. I am not moving very well these days, nor do I have alot of energy. But taking notes from the slow and steady tortoise of yore, I was still able to happily work outside with a huge smile on my face.
Now that I'm back in KC, this week is all about getting ready to leave town for 3 weeks. I already have received notification from the Doctors at the NIH Clinical Center that I have a pituitary MRI scheduled for Monday September 13th! Looks like I'm going to be hitting the ground running and I can't wait to share it all with you as I go along. That and all the sights and sounds of being a tourist in Washington DC. Woo-hoo!
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| Villa de Davis |
Now that I'm back in KC, this week is all about getting ready to leave town for 3 weeks. I already have received notification from the Doctors at the NIH Clinical Center that I have a pituitary MRI scheduled for Monday September 13th! Looks like I'm going to be hitting the ground running and I can't wait to share it all with you as I go along. That and all the sights and sounds of being a tourist in Washington DC. Woo-hoo!
Wednesday, September 1, 2010
And so it begins...
There are many of you out there who are new to this Cushing's Syndrome saga I have been going through. It has indeed been a long strange trip since April of this year - one that, looking back, I can't really believe has been my life. Be that as it may, here I am. I won't bore you with revisiting the good, bad, ugly, and definitely jaw-droppingly crazy twists and turns we've encountered during the diagnosis, testing and treatment of my little Cushie, but details will emerge as I reflect and blog I'm sure.
I am so incredibly lucky to have a team of medical professionals here in Kansas City who have done everything humanly possible to get to the bottom of what's causing my system to create all Cortisol, all the time. However, as is my typical game plan, I seem to be stumping the experts. Thanks to the dedication of my Endocrinologist, and his ability to stalk speakers at conferences (!), I have the opportunity to go to the Clinical Center at the National Institutes of Health in Bethesda, MD for treatment. If it wasn't for Dr. Laney chasing down and discussing my case with an amazing Dr. from the NIH that is tops in the field of Cushing's, I'd be running out of options. As it is now, I have renewed hope that I can get cured and back to my normal life.
I leave on September 12th to go to Bethesda, or as I fondly have started calling it, Medical Freak Camp. I will be back there as an inpatient at the National Institutes of Health Clinical Center for at least 3 weeks of testing and, hopefully, treatment. Our goal is to find the little rogue tumor that is causing my Cushing's Syndrome, but that seems to be eluding any and all means of finding it so far. In between all the medical fun, I plan taking in as many of the attractions in our Nation's capital as possible, and maybe even attend a Nationals game or two. I don't know how much I'll be up to doing, but I'm never one to let an unfilled moment go by if I can help it.
As soon as I get admitted to the Clinical Center on the 12th, I will have a mailing address that I will publish here on The Cush Life blog. This blog will hopefully be part information dispensing, life-as-irony commentorium, travel log, and crazy medical case study. Not to mention a mini lesson on the inside happenings of the NIH. Please feel free to visit often and comment freely on The Cush Life. I appreciate all input including sightseeing ideas, humorous anecdotes, pictures of cute puppies and kitties, and just notes to say hi.
I am so incredibly lucky to have a team of medical professionals here in Kansas City who have done everything humanly possible to get to the bottom of what's causing my system to create all Cortisol, all the time. However, as is my typical game plan, I seem to be stumping the experts. Thanks to the dedication of my Endocrinologist, and his ability to stalk speakers at conferences (!), I have the opportunity to go to the Clinical Center at the National Institutes of Health in Bethesda, MD for treatment. If it wasn't for Dr. Laney chasing down and discussing my case with an amazing Dr. from the NIH that is tops in the field of Cushing's, I'd be running out of options. As it is now, I have renewed hope that I can get cured and back to my normal life.
I leave on September 12th to go to Bethesda, or as I fondly have started calling it, Medical Freak Camp. I will be back there as an inpatient at the National Institutes of Health Clinical Center for at least 3 weeks of testing and, hopefully, treatment. Our goal is to find the little rogue tumor that is causing my Cushing's Syndrome, but that seems to be eluding any and all means of finding it so far. In between all the medical fun, I plan taking in as many of the attractions in our Nation's capital as possible, and maybe even attend a Nationals game or two. I don't know how much I'll be up to doing, but I'm never one to let an unfilled moment go by if I can help it.
As soon as I get admitted to the Clinical Center on the 12th, I will have a mailing address that I will publish here on The Cush Life blog. This blog will hopefully be part information dispensing, life-as-irony commentorium, travel log, and crazy medical case study. Not to mention a mini lesson on the inside happenings of the NIH. Please feel free to visit often and comment freely on The Cush Life. I appreciate all input including sightseeing ideas, humorous anecdotes, pictures of cute puppies and kitties, and just notes to say hi.
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