Ok, ok, so I kind of left you all hanging a week and a half ago. "What the hell happened" you may be asking. Or maybe not. Honestly, I made it clear I was alive, so I'm sure everyone went back to their lives. However, if you are curious, I thought it was time to fill you in on the last few fun filled days I spent at the NIH.
I went into surgery to have my adrenal glands removed as scheduled on Wednesday February 25. My surgeon, Dr. Electron Kebebow (seriously, his first name is Electron! His dad is a physicist and his brothers are named Proton and Neutron!) does this procedure all the time and his minion, the World's Tallest Surgeon (I never got his name even though he was the one that I mostly dealt with. The man is pushing 7 feet tall! All I had to say is World's Tallest Surgeon and everyone knew who I was talking about.) put me totally at ease that I was good to go. After the routine surgery was done, I spent the night in ICU as a precaution. Honestly, aside from being hooked up to IV's, and being full of the CO2 that they pumped into my belly to get all my internals to float around, it was a very easy post op. I couldn't get a full breath because, I thought, of all the air in my belly, but I didn't need any pain meds and was walking with my nurse up and down the halls like a champ. Well, like a champ that just had fairly major surgery...
I was back up in my room on Thursday and was still having trouble getting a deep breath, but eating, walking and peeing pretty well. My stomach was upset, but we chalked it up to the anesthesia and I drank more water hoping to just get it all washed out of my system. Friday morning I got to take a shower! My IV's were out, the 7 incisions on my belly were taped shut (much better than the staples used in my hips!!) and my hair desperately needed washing. I was feeling good and hoping to be discharged on Monday. It seemed eminently doable...until after the shower when it all started to go wrong.
The shower really took it out of me. I was tired and just wanted to sleep. Doctors, surgeons, and nurses were coming in and out and it was starting to be a blur. I was so tired and it just kept getting worse. My stomach was so upset and full of air and all I wanted to do was sleep. This is where not having adrenal glands is a bit of a problem. We stress dosed hydrocortisone to replace the cortisol that my body no longer produces to get me through the surgery, and tapered down to a normal dose on Friday. It should have been no problem. But something was not right and by Friday night it was obvious that I needed help. I was throwing up and diarrhea-ing, had a fever and was shivering uncontrollably. My blood pressure dropped perilously low and it wasn't coming back up.
A lot of people worked through the night to keep me going and figure out what was happening. I was being pumped full of hydrocortisone, blood thinners and Tylenol. A chest xray on Saturday morning showed a partially collapsed lung and a ton of free air in my system. That's bad. And the fever wasn't going away, but whatever infection was causing it was not helping us out by being obvious. They never did figure that out. Anyhoo, I still wanted to get out of there on Monday and was not going to let any of this craziness keep me from getting home. I was still down in bed all day Saturday but by Saturday night I was feeling a little better. I made it through Saturday night relatively well and Sunday I was back up and around determined to discharge Monday.
That's it. That's the story. The doctors let me go on Monday and Keith and I flew home Tuesday. I was tired, sore and yet SO happy to finally go home. It was a long travel day and took a few days to recover from it. Let alone recover from the surgery and ensuing excitement. But I'm finally feeling relatively good and getting back into my normal routine. They say I can't lift anything or push it for 6-8 weeks, but I'm going to try for a bit more aggressive schedule. Hopefully this week I'll get out for some walks (always with my phone in case I need to call the sag wagon!) and throw myself into home improvement and decorating projects. My goal is to be back in the gym for cardio next week. Nothing agro, but just moving the body.
Cushing's is in the rear view mirror now and I couldn't be happier. Life has been on hold for 5 years and now it's starting again. Everyone get out of the way!!!
Monday, March 9, 2015
Tuesday, February 24, 2015
FAQ's
There are some questions that most of you have so I thought I'd address them en masse. You know how much I love efficiency!!
1)When is your Adrenalectomy surgery scheduled for?
Tomorrow Wednesday February 25th.
2)What does not having your adrenal glands mean to your everyday life?
Other than having to take the steroids that the adrenal glands produce by mouth every day, not a whole lot. Cortisol will be replaced by synthetic hydrocortisone, and everything will be replaced by a drug called florinef. I'll take hydrocortisone 2-3 times during the day (to mimic the natural arc on which our bodies produce cortisol), and florinef once. This will be SO much nicer than the drug regimen I am currently on!
3)Is it really that easy?
No, of course not. Nothing is that easy. If I'm sick, or have some sort of trauma to my body, I need much more replacement hydrocortisone to mimic the body's natural response to these conditions otherwise my system will be seriously compromised. Like I could die compromised. If I'm sick, I can just take more hydrocortisone for several days and, working with my doctor, I should feel fine. If I get hit by a bus, or end up in a situation where I cannot verbally tell someone that my body doesn't produce these steroids, I will be wearing a medic alert bracelet so that the health care professionals know what to do. I also will have to carry an emergency dose of injectable hydrocortisone in case Adrenal Insufficiency sneaks up on me and I find myself in a bad situation. However, if I diligently pay attention to how I'm feeling and what my body is telling me, I shouldn't need to use it.
4)Can you exercise?
As much and as hard as I want. The steroid levels naturally produced by the adrenal glands are not effected by exercise. It isn't the same as the stress put on by injury or illness. My hips and age are more impactful on my athletic capacity than anything having to do with not having adrenal glands.
5)Are you done at the NIH or will you still have to go back to Bethesda?
My NIH doctors still want to find the tumor that is causing my Cushing's Syndrome. Because the tumors are very slow growing, and the scans at this level are pretty radioactive, they will only need me to return every 2 years or so to be rescanned and tested. If/when they do find the tumor it will be relatively inconsequential to my life. It's not even something that in most cases would need to be removed if found. Without adrenal glands it won't have any effect on how my body functions. But my case won't really be able to be "closed" until we find the little bugger.
6)When will you be able to go home?
We are aiming to get me discharged on Monday March 2nd. Recovery should go pretty quickly given that the surgeons suck out the glands through small holes in either side of my abdomen. There is some moving of the internal stuff around to get to the adrenals, but when it comes to recovery, if all according to plan it should be relatively easy. This spoken by a person who had 3 hip replacements in 3 years so maybe my perspective on recovery is a little skewed...but the recovery and discharge timeline is coming from my doctors. I'm not just making it up in my head.
I'm looking forward to this surgery as weird as that sounds. I'm ready for this to be over, and can think of no other place I'd rather be in to make that happen. I'll get back to just being Carol, not Carol the Cushing's patient and nothing could be better than that!!
1)When is your Adrenalectomy surgery scheduled for?
Tomorrow Wednesday February 25th.
2)What does not having your adrenal glands mean to your everyday life?
Other than having to take the steroids that the adrenal glands produce by mouth every day, not a whole lot. Cortisol will be replaced by synthetic hydrocortisone, and everything will be replaced by a drug called florinef. I'll take hydrocortisone 2-3 times during the day (to mimic the natural arc on which our bodies produce cortisol), and florinef once. This will be SO much nicer than the drug regimen I am currently on!
3)Is it really that easy?
No, of course not. Nothing is that easy. If I'm sick, or have some sort of trauma to my body, I need much more replacement hydrocortisone to mimic the body's natural response to these conditions otherwise my system will be seriously compromised. Like I could die compromised. If I'm sick, I can just take more hydrocortisone for several days and, working with my doctor, I should feel fine. If I get hit by a bus, or end up in a situation where I cannot verbally tell someone that my body doesn't produce these steroids, I will be wearing a medic alert bracelet so that the health care professionals know what to do. I also will have to carry an emergency dose of injectable hydrocortisone in case Adrenal Insufficiency sneaks up on me and I find myself in a bad situation. However, if I diligently pay attention to how I'm feeling and what my body is telling me, I shouldn't need to use it.
4)Can you exercise?
As much and as hard as I want. The steroid levels naturally produced by the adrenal glands are not effected by exercise. It isn't the same as the stress put on by injury or illness. My hips and age are more impactful on my athletic capacity than anything having to do with not having adrenal glands.
5)Are you done at the NIH or will you still have to go back to Bethesda?
My NIH doctors still want to find the tumor that is causing my Cushing's Syndrome. Because the tumors are very slow growing, and the scans at this level are pretty radioactive, they will only need me to return every 2 years or so to be rescanned and tested. If/when they do find the tumor it will be relatively inconsequential to my life. It's not even something that in most cases would need to be removed if found. Without adrenal glands it won't have any effect on how my body functions. But my case won't really be able to be "closed" until we find the little bugger.
6)When will you be able to go home?
We are aiming to get me discharged on Monday March 2nd. Recovery should go pretty quickly given that the surgeons suck out the glands through small holes in either side of my abdomen. There is some moving of the internal stuff around to get to the adrenals, but when it comes to recovery, if all according to plan it should be relatively easy. This spoken by a person who had 3 hip replacements in 3 years so maybe my perspective on recovery is a little skewed...but the recovery and discharge timeline is coming from my doctors. I'm not just making it up in my head.
I'm looking forward to this surgery as weird as that sounds. I'm ready for this to be over, and can think of no other place I'd rather be in to make that happen. I'll get back to just being Carol, not Carol the Cushing's patient and nothing could be better than that!!
Friday, February 20, 2015
This isn't getting any less absurd...Seriously...
I thought that it couldn't get any weirder. Those of you who have followed my Cushing's saga for a while are well aware of the twists and turns that it has taken. Some have been more ridiculous than others, but I don't think 6 months have gone by in the last 5 years where I haven't been surprised by some Cushing's related thing that makes not only me, but my doctors as well, scratch their heads. As we wind this medical adventure down, my body couldn't resist getting in one more lick just to remind us all exactly who is and isn't in charge. In my opinion the best and most absurd has just happened.
To review, I was scheduled to have my thymus removed on Tuesday 2/24. If my thymus wasn't the cause of my Cushing's, we'd know a few days after surgery if my cortisol level went back up to Cushing's levels. If this happens, then I'm scheduled for an adrenalectomy on 3/9. The adrenalectomy solves the Cushing's problem by removing the gland that produces cortisol. No gland, no cortisol. Done. Yes I have to take medication for the rest of my life, and it becomes a very serious situation if I get injured or have a surgery and extra synthetic cortisol is not administered. I could die. But other than that it's very manageable. If the thymus is the cause of my Cushing's, I go home happy as a clam and resume my life medication free. I'd rather continue to have my adrenal glands, but both options are better than where I've been for the last 5 years.
Imagine my surprise last night when my doctors arrived in my room to (reluctantly) inform me that the thymus surgery scheduled for Tuesday had been cancelled. Huh? My team knows how much I was counting on this happening. They know how close to the end of my rope I am and have promised that when I leave to go back home I will be Cushing's free - one way or another. How can they be standing there telling me this? If the surgeon has, yet again, decided to cancel me for his own reasons, I cannot be held responsible for my actions...or the verbal barrage that will be aimed directly at his, and his entire family's, disposition and reputation. There will not be an ego that is left un-pilloried when I am finished. Mark my words! But I suppose I should listen to what the doctors are saying is the cause of the cancellation before I begin my rant...
It seems that my thymus, since I was here in February 2014, has disappeared. It was there - I saw the scans. And now it is not. I saw those scans too. It's been there, oversized and an oddity, since my first scan here 5 years ago. But at some point over the last year it decided to go away. This was not something that was anticipated by my team, nor was it anything that they could explain by more than a shaky hypothesis not supported by any statistically significant data. It is true that when you have Cushing's the thymus enlarges. But if it is controlled, either by medication or by surgery, the thymus will return to normal size. For a person my age, normal is non-existent. But I have been reasonably well controlled for 4 years now. Yes there have been unstable periods along the way, but not for long periods of time and not with cortisol levels that were near to where I was before being treated with the medication the NIH provides to me. The general consensus has always been that if my thymus was going to shrink it would have done so long before now. A mark on the side of the tumor being in the thymus. Imagine the surprise when the doctors went to look for my thymus and it wasn't where they left it!
The thymus removal surgery was cancelled because there is no longer a thymus to remove. Seeing that absurdity now???
Luckily the surgical team who will perform the removal of my adrenal glands were able to move my surgery up to next Wednesday 2/25. So while it's not my option of first choice, I will still walk out of here with no Cushing's Syndrome and that's a good thing. 5 years ago I couldn't imagine accepting the loss of my adrenal glands. I never expected that this is how things would end. It seemed like too big a thing living without a pretty important gland that produces chemicals that basically keep you alive and being dependent on daily medication to stay upright and out of the hospital and/or morgue. But if I've learned nothing else from this experience, quality of life is the most important thing. That becomes really clear when you don't have it. And I want mine back. At this point, the price is my adrenal glands. And that's a price I'm willing and eager to pay.
To review, I was scheduled to have my thymus removed on Tuesday 2/24. If my thymus wasn't the cause of my Cushing's, we'd know a few days after surgery if my cortisol level went back up to Cushing's levels. If this happens, then I'm scheduled for an adrenalectomy on 3/9. The adrenalectomy solves the Cushing's problem by removing the gland that produces cortisol. No gland, no cortisol. Done. Yes I have to take medication for the rest of my life, and it becomes a very serious situation if I get injured or have a surgery and extra synthetic cortisol is not administered. I could die. But other than that it's very manageable. If the thymus is the cause of my Cushing's, I go home happy as a clam and resume my life medication free. I'd rather continue to have my adrenal glands, but both options are better than where I've been for the last 5 years.
Imagine my surprise last night when my doctors arrived in my room to (reluctantly) inform me that the thymus surgery scheduled for Tuesday had been cancelled. Huh? My team knows how much I was counting on this happening. They know how close to the end of my rope I am and have promised that when I leave to go back home I will be Cushing's free - one way or another. How can they be standing there telling me this? If the surgeon has, yet again, decided to cancel me for his own reasons, I cannot be held responsible for my actions...or the verbal barrage that will be aimed directly at his, and his entire family's, disposition and reputation. There will not be an ego that is left un-pilloried when I am finished. Mark my words! But I suppose I should listen to what the doctors are saying is the cause of the cancellation before I begin my rant...
It seems that my thymus, since I was here in February 2014, has disappeared. It was there - I saw the scans. And now it is not. I saw those scans too. It's been there, oversized and an oddity, since my first scan here 5 years ago. But at some point over the last year it decided to go away. This was not something that was anticipated by my team, nor was it anything that they could explain by more than a shaky hypothesis not supported by any statistically significant data. It is true that when you have Cushing's the thymus enlarges. But if it is controlled, either by medication or by surgery, the thymus will return to normal size. For a person my age, normal is non-existent. But I have been reasonably well controlled for 4 years now. Yes there have been unstable periods along the way, but not for long periods of time and not with cortisol levels that were near to where I was before being treated with the medication the NIH provides to me. The general consensus has always been that if my thymus was going to shrink it would have done so long before now. A mark on the side of the tumor being in the thymus. Imagine the surprise when the doctors went to look for my thymus and it wasn't where they left it!
The thymus removal surgery was cancelled because there is no longer a thymus to remove. Seeing that absurdity now???
Luckily the surgical team who will perform the removal of my adrenal glands were able to move my surgery up to next Wednesday 2/25. So while it's not my option of first choice, I will still walk out of here with no Cushing's Syndrome and that's a good thing. 5 years ago I couldn't imagine accepting the loss of my adrenal glands. I never expected that this is how things would end. It seemed like too big a thing living without a pretty important gland that produces chemicals that basically keep you alive and being dependent on daily medication to stay upright and out of the hospital and/or morgue. But if I've learned nothing else from this experience, quality of life is the most important thing. That becomes really clear when you don't have it. And I want mine back. At this point, the price is my adrenal glands. And that's a price I'm willing and eager to pay.
Sunday, February 15, 2015
Anyone else hear the fat lady singing?
What a year 2014 was. And what a year 2015 will be. As Cushing's comes, so will it go; although not the way I thought it would when we started on this journey in 2010.
Amongst the bevy of wonderful and joyous things that happened in 2014 (including moving to sunny California!!) were the down times mostly revolving around being sick. After being relatively stable for a good period of time my body decided it wouldn't play anymore. My body chemistry went rogue and it seemed like for the last 6 months every time I turned around I had something else going wrong. We'd get one level back to normal and what we did would throw something else out of whack. And believe me there are a lot of things whose whack can be thrown. I got very sick. I'd have great days where I could do anything I wanted to do, followed by a day or two or five of not being able to get out of bed. I couldn't think straight and became very weak. Those of you who know me know that Carol does not live her life that way.
When I started out on the Cushing's Syndrome journey 5 years ago, it never occurred to me that we wouldn't find the source of it, remove it, and I would get back to my life. As the saga continued, each incident more ridiculous than the last, I was still convinced that while the tumor could outsmart me, it surely couldn't outsmart all of the doctors that were trying to find it. All I had to do was get through the medication that makes me ill, the toxic scans, the body that I couldn't count on, the doctor visits and eventually we'd find the tumor, take it out and bada bing, bada boom we'd be done. I'm not that special! My case couldn't be that rare!
Apparently I am and it is.
I said along the way that I didn't want to give up. I could make it to the end of the journey whatever it was. Although in retrospect the end was always tumor removal and not having my adrenal glands taken out (then the tumor can do whatever it wants but nothing is there to do it's bidding). Removing my adrenals was always a last resort that I never figured I'd have to deal with. Again, my case couldn't be that rare, and besides, I'm not a quitter. I can make it through anything anyone or anything has to throw at me. It may not always be pretty, but I can do it. If I have to take meds that make me sick and push through on days I want to curl up and die, I can do that. I'm better, stronger, faster. What I wasn't asking was "while you can do it, should you do it?". Probably a question that most of us don't ask ourselves enough.
The last 6 months have lit the bulb over my noggin. I'm done. I'm done with the uncertainty. I'm done with the toxicity. I'm done having something dictating how I live my life. I'm done sacrificing my happiness. The journey needs to be over. Of course having your doctors, the brightest minds in the endocrinology world, say that there are no more cards to play gives a little nudge too.
I'm here at the NIH for a month or so, and am going to have one surgery, maybe two. The first surgery is going to be removal of my thymus (not thyroid, thymus) on February 24th. As an adult you don't need it, and most adults don't really have much of one. You may use the google machine to find out what it does, but suffice it to say it's expendable to an adult system. Mine is big. That's odd, but not statistically related to Cushing's. And it has "lit up" on several scans over the years, but again that's not statistically significant. But there have been literally a handful of cases that can be documented where ectopic Cushing's tumors have been located in the thymus. So we're going to give it a whirl and take it out. Maybe I'll be the handful and one. If that doesn't work, and we should know within a week or so after that surgery, I will have my adrenals taken out. While that will come with a lifetime of medication taking and leave me open to several conditions that could, in the wrong context, kill me, it's a lifetime that is totally manageable and much more stable and healthy than the one I'm living now. I don't really feel much emotion about either option. I've been through too much at this point I think. I'm more just bored and impatient than anything else. Let's get this show on the road. And let the singing from the fat lady get louder...
Amongst the bevy of wonderful and joyous things that happened in 2014 (including moving to sunny California!!) were the down times mostly revolving around being sick. After being relatively stable for a good period of time my body decided it wouldn't play anymore. My body chemistry went rogue and it seemed like for the last 6 months every time I turned around I had something else going wrong. We'd get one level back to normal and what we did would throw something else out of whack. And believe me there are a lot of things whose whack can be thrown. I got very sick. I'd have great days where I could do anything I wanted to do, followed by a day or two or five of not being able to get out of bed. I couldn't think straight and became very weak. Those of you who know me know that Carol does not live her life that way.
When I started out on the Cushing's Syndrome journey 5 years ago, it never occurred to me that we wouldn't find the source of it, remove it, and I would get back to my life. As the saga continued, each incident more ridiculous than the last, I was still convinced that while the tumor could outsmart me, it surely couldn't outsmart all of the doctors that were trying to find it. All I had to do was get through the medication that makes me ill, the toxic scans, the body that I couldn't count on, the doctor visits and eventually we'd find the tumor, take it out and bada bing, bada boom we'd be done. I'm not that special! My case couldn't be that rare!
Apparently I am and it is.
I said along the way that I didn't want to give up. I could make it to the end of the journey whatever it was. Although in retrospect the end was always tumor removal and not having my adrenal glands taken out (then the tumor can do whatever it wants but nothing is there to do it's bidding). Removing my adrenals was always a last resort that I never figured I'd have to deal with. Again, my case couldn't be that rare, and besides, I'm not a quitter. I can make it through anything anyone or anything has to throw at me. It may not always be pretty, but I can do it. If I have to take meds that make me sick and push through on days I want to curl up and die, I can do that. I'm better, stronger, faster. What I wasn't asking was "while you can do it, should you do it?". Probably a question that most of us don't ask ourselves enough.
The last 6 months have lit the bulb over my noggin. I'm done. I'm done with the uncertainty. I'm done with the toxicity. I'm done having something dictating how I live my life. I'm done sacrificing my happiness. The journey needs to be over. Of course having your doctors, the brightest minds in the endocrinology world, say that there are no more cards to play gives a little nudge too.
I'm here at the NIH for a month or so, and am going to have one surgery, maybe two. The first surgery is going to be removal of my thymus (not thyroid, thymus) on February 24th. As an adult you don't need it, and most adults don't really have much of one. You may use the google machine to find out what it does, but suffice it to say it's expendable to an adult system. Mine is big. That's odd, but not statistically related to Cushing's. And it has "lit up" on several scans over the years, but again that's not statistically significant. But there have been literally a handful of cases that can be documented where ectopic Cushing's tumors have been located in the thymus. So we're going to give it a whirl and take it out. Maybe I'll be the handful and one. If that doesn't work, and we should know within a week or so after that surgery, I will have my adrenals taken out. While that will come with a lifetime of medication taking and leave me open to several conditions that could, in the wrong context, kill me, it's a lifetime that is totally manageable and much more stable and healthy than the one I'm living now. I don't really feel much emotion about either option. I've been through too much at this point I think. I'm more just bored and impatient than anything else. Let's get this show on the road. And let the singing from the fat lady get louder...
Sunday, March 2, 2014
I like my steaks rare...
...but my diseases not so much...
Actually that's not true. I don't even like my steaks rare. I like them burnt. Charred. Deader than a door nail and covered with a layer of carcinogous goodness. Predictably free of life and pathogens that have been cooked out of it several times over. Needless to say I do not cook my own steak as a rule because it turns out like a very expensive hockey puck, but that's another kettle of blog. Let's get back to the matters at hand.
I used to think there was a really cool mystique around having a rare disease. You see people who have them on tv or the interwebs packaged into stories of struggle and triumph. Faith and persistence. Sacrifice and perseverance in the face of adversity. But when you are sitting in the success seat looking back at the nightmare, the story is different than it is while you are going through it. When you have a solution, the process to find it makes sense. If you don't have answers it's all just a muddle of being the ball in a giant pinball machine that never stops and doesn't tilt (if you're under 40 and reading this, go ask your parents what a pinball machine is...). I'm hearing the background music now courtesy of Roger Daltry and the Who.
There is very little to report from the past week of scans and tests here at the NIH. However, at the 11th hour something did show up that didn't give us any answers but rather more questions. Not the list I wanted to add to, but the pinball doesn't have a say in that. Briefly, for those of you who have a weird curiosity about these things, my thymus has been "lighting up" on MRI's I've had here for a couple years. But not on any of the other scans. Considering the thymus has nothing to do with Cushing's, and there are not any cases even in the weirdest of the weird ones, where it matters, we explained away the anomaly and moved on. This trip yielded much the same results as earlier trips with the exception of that new scan. The new test turbo scan accompanied by the lead syringe full of goodness knows what that makes you radioactive for a day or two (I prefer to dwell on my possible superhero names and powers than the damage done to my system). My thymus "lit up" on that one too. Yippee, right? That's a cross check that must confirm something even if we don't know what it is. That's good, right? Let's review one point - the thymus has nothing to do with Cushing's. What the hell do we do now?
My thymus has never acted the way it would be expected to on my scans. When it's supposed to shrink it grows. When it is expected to get bigger ( like if it was grinding out Cushing's goo) it doesn't. Sadly this is not the first time this type of puzzling test results has been presented by my person.
THIS IS WHAT IT MEANS TO BE RARE! It's not glamorous. It's not interesting. It's a pain in the freaking ass! It means we pursue things that make no sense. That aren't logical and in some cases an explanation has to be fabricated that is almost laughable. There isn't anything to compare to when you're rare. There is no guidepost. There ends up being a lot of try and fail, and hope and disappointment. Experimentation that wears you down exponentially faster than any traditional treatment does. Yippee???...you tell me.
So I'm still here. Monday my doctor is going to try to schedule a procedure to get a sample of the fluids flowing in and around my thymus. If that doctor can squeeze me in this week, I'll stay and have that done. If not, I'll leave and come back for it. When the sampling has been done, it will be up to my doctor to figure out what, if anything, the sampling tells us. I'm leaning towards unicorns exist and the tooth fairy is real, but I'm no expert. It's no more crazy than some of the other theories that are being floated around here. If someone sees Jesus in a grilled cheese sandwich I may be cured!
Actually that's not true. I don't even like my steaks rare. I like them burnt. Charred. Deader than a door nail and covered with a layer of carcinogous goodness. Predictably free of life and pathogens that have been cooked out of it several times over. Needless to say I do not cook my own steak as a rule because it turns out like a very expensive hockey puck, but that's another kettle of blog. Let's get back to the matters at hand.
I used to think there was a really cool mystique around having a rare disease. You see people who have them on tv or the interwebs packaged into stories of struggle and triumph. Faith and persistence. Sacrifice and perseverance in the face of adversity. But when you are sitting in the success seat looking back at the nightmare, the story is different than it is while you are going through it. When you have a solution, the process to find it makes sense. If you don't have answers it's all just a muddle of being the ball in a giant pinball machine that never stops and doesn't tilt (if you're under 40 and reading this, go ask your parents what a pinball machine is...). I'm hearing the background music now courtesy of Roger Daltry and the Who.
There is very little to report from the past week of scans and tests here at the NIH. However, at the 11th hour something did show up that didn't give us any answers but rather more questions. Not the list I wanted to add to, but the pinball doesn't have a say in that. Briefly, for those of you who have a weird curiosity about these things, my thymus has been "lighting up" on MRI's I've had here for a couple years. But not on any of the other scans. Considering the thymus has nothing to do with Cushing's, and there are not any cases even in the weirdest of the weird ones, where it matters, we explained away the anomaly and moved on. This trip yielded much the same results as earlier trips with the exception of that new scan. The new test turbo scan accompanied by the lead syringe full of goodness knows what that makes you radioactive for a day or two (I prefer to dwell on my possible superhero names and powers than the damage done to my system). My thymus "lit up" on that one too. Yippee, right? That's a cross check that must confirm something even if we don't know what it is. That's good, right? Let's review one point - the thymus has nothing to do with Cushing's. What the hell do we do now?
My thymus has never acted the way it would be expected to on my scans. When it's supposed to shrink it grows. When it is expected to get bigger ( like if it was grinding out Cushing's goo) it doesn't. Sadly this is not the first time this type of puzzling test results has been presented by my person.
THIS IS WHAT IT MEANS TO BE RARE! It's not glamorous. It's not interesting. It's a pain in the freaking ass! It means we pursue things that make no sense. That aren't logical and in some cases an explanation has to be fabricated that is almost laughable. There isn't anything to compare to when you're rare. There is no guidepost. There ends up being a lot of try and fail, and hope and disappointment. Experimentation that wears you down exponentially faster than any traditional treatment does. Yippee???...you tell me.
So I'm still here. Monday my doctor is going to try to schedule a procedure to get a sample of the fluids flowing in and around my thymus. If that doctor can squeeze me in this week, I'll stay and have that done. If not, I'll leave and come back for it. When the sampling has been done, it will be up to my doctor to figure out what, if anything, the sampling tells us. I'm leaning towards unicorns exist and the tooth fairy is real, but I'm no expert. It's no more crazy than some of the other theories that are being floated around here. If someone sees Jesus in a grilled cheese sandwich I may be cured!
Thursday, February 27, 2014
Just another beautiful day on the ward...
I wish there was something interesting to report dear readers, but sadly there is not. The overarching theme of my NIH stay is still hurry up and wait. Actually, you don't even need to hurry up. I'm just kind of hanging out and waiting with some injections, scans, meds and meals in between.
The MRI's that I've had so far has shown nothing, but we weren't really expecting to. They are just kind of insurance scans to be sure nothing crazy is going on...or crazier going on...anyhoo, nothing there. All the blood tests and 3 days straight of peeing in jugs yielded much the same results as I was getting over the past few weeks in Kansas City. So no new news there. We are still waiting for the doctors to read the three CT scans I've had, but I'm not super hopeful there. No real reason except that I have those CT scans every time I come here and they have never yielded any sightings of the mystery tumor.
Today I have the scan that might just break my case wide open. Of course I did have to sign my life away to take part in the test protocol, but if it finds something it'll all be worth it. Right now I'm fixated on the fact that I had to wolf down an early breakfast because I can't eat for 6 hours before the scan. Anyone who knows me knows that missing a meal is not high on my favorite things list. The only problem with getting my hopes up about this scan, aside from just your average run of the mill problems with getting my hops up after 3 years of disappointment, is that it'll be 24 hours before the doctors reading the scan meet with my doctors. That means no news comes to me until Friday night.
The enemy of positive thinking is time. Empty hours let the negative in to fester and grow until it consumes you. Mental exhaustion comes not from dealing with problems, but thinking about them. With dealing comes action. A process of moving through the problem and making progress no matter what kind or how minute. Thinking without control just puts your brain on a loop that it can't stop until it has to shut down. And when that happens nothing works. So here, I walk, I go to the gym, I go to the library and read magazines that I wouldn't look twice at in the checkout line, I binge watch shows on hulu I have no interest in under normal circumstances. So far I'm doing ok...until I run out of magazines...
The MRI's that I've had so far has shown nothing, but we weren't really expecting to. They are just kind of insurance scans to be sure nothing crazy is going on...or crazier going on...anyhoo, nothing there. All the blood tests and 3 days straight of peeing in jugs yielded much the same results as I was getting over the past few weeks in Kansas City. So no new news there. We are still waiting for the doctors to read the three CT scans I've had, but I'm not super hopeful there. No real reason except that I have those CT scans every time I come here and they have never yielded any sightings of the mystery tumor.
Today I have the scan that might just break my case wide open. Of course I did have to sign my life away to take part in the test protocol, but if it finds something it'll all be worth it. Right now I'm fixated on the fact that I had to wolf down an early breakfast because I can't eat for 6 hours before the scan. Anyone who knows me knows that missing a meal is not high on my favorite things list. The only problem with getting my hopes up about this scan, aside from just your average run of the mill problems with getting my hops up after 3 years of disappointment, is that it'll be 24 hours before the doctors reading the scan meet with my doctors. That means no news comes to me until Friday night.
The enemy of positive thinking is time. Empty hours let the negative in to fester and grow until it consumes you. Mental exhaustion comes not from dealing with problems, but thinking about them. With dealing comes action. A process of moving through the problem and making progress no matter what kind or how minute. Thinking without control just puts your brain on a loop that it can't stop until it has to shut down. And when that happens nothing works. So here, I walk, I go to the gym, I go to the library and read magazines that I wouldn't look twice at in the checkout line, I binge watch shows on hulu I have no interest in under normal circumstances. So far I'm doing ok...until I run out of magazines...
Tuesday, February 25, 2014
It's like falling of a bike....
Here I am back at the NIH for my annual (give or take a month or so) two week probe, drain and scan. I know the process now - where everything is, who the players are and how things work. In some ways it was better when I came here more often because the people would recognize me and know my name. But over the past two years my body and face has changed so much (and thankfully back to the way all of you know me!) that now they don't recognize and remember me this way! Of course as soon as I open my mouth and put on my tiara it all comes flooding back.
Most people want to know what I do when I'm here. And basically it's easy. Wait for a blood draw, get a blood draw, wait for an injection of radioactive contrast, have an injection of radioactive contrast, wait for a scan, have a scan, wait for my meds, take my meds, order a meal, wait for a meal, eat a meal. Then repeat multiple times during the day. Boom. There you have it. No more need to wonder. You are now fully informed.
Keith told me last night that he admired me for getting through the days here. Patience has never been a virtue I possess and I can see how it would seem crazy that I can manage days that revolve around waiting for something or other, and laying in scan tubes for hours without totally losing it . I can see that, but understand my point of view. If I got my knickers in a knot it would just make everything worse and why would I want to do that? I don't have a choice about what happens here. My control only goes so far. But I still have control over the way I think about it and deal with events. As long as I control that everything else is manageable. Not to mention that all I have to do is take a look around at the other people on my ward and the kids 4 floors down and I remember how lucky I am to be doing as well as I am. And I owe all of that to the people and process here. Consider these knickers un-knot-able at this point. Besides, I have hair and fit into my pants. Need I say more?...
I'll try to post more as the week progresses and the test and scan results come in. We are hoping that a tumor is found and in addition to all the usual scans there is a new one that's being tested that my doctors think may be the ticket. Of course if a tumor is found then we have to decide what and when to do something about it. Which will be hard and complicated. But we'll cross that bridge when we come to it. There's always the possibility that nothing will turn up and I'll be sent home to endure the same "wait and see" merry go round that I've been on for the past year. Right now I honestly can't decide which to hope for, but I probably go toward the don't get your hopes up side. That doesn't mean that you all can't hope they find something. In fact, please do.
Well, I have to call for my lunch and wait for it to come. Another exciting day...
Most people want to know what I do when I'm here. And basically it's easy. Wait for a blood draw, get a blood draw, wait for an injection of radioactive contrast, have an injection of radioactive contrast, wait for a scan, have a scan, wait for my meds, take my meds, order a meal, wait for a meal, eat a meal. Then repeat multiple times during the day. Boom. There you have it. No more need to wonder. You are now fully informed.
Keith told me last night that he admired me for getting through the days here. Patience has never been a virtue I possess and I can see how it would seem crazy that I can manage days that revolve around waiting for something or other, and laying in scan tubes for hours without totally losing it . I can see that, but understand my point of view. If I got my knickers in a knot it would just make everything worse and why would I want to do that? I don't have a choice about what happens here. My control only goes so far. But I still have control over the way I think about it and deal with events. As long as I control that everything else is manageable. Not to mention that all I have to do is take a look around at the other people on my ward and the kids 4 floors down and I remember how lucky I am to be doing as well as I am. And I owe all of that to the people and process here. Consider these knickers un-knot-able at this point. Besides, I have hair and fit into my pants. Need I say more?...
I'll try to post more as the week progresses and the test and scan results come in. We are hoping that a tumor is found and in addition to all the usual scans there is a new one that's being tested that my doctors think may be the ticket. Of course if a tumor is found then we have to decide what and when to do something about it. Which will be hard and complicated. But we'll cross that bridge when we come to it. There's always the possibility that nothing will turn up and I'll be sent home to endure the same "wait and see" merry go round that I've been on for the past year. Right now I honestly can't decide which to hope for, but I probably go toward the don't get your hopes up side. That doesn't mean that you all can't hope they find something. In fact, please do.
Well, I have to call for my lunch and wait for it to come. Another exciting day...
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