It WAS a good day!

I got the call from the Mayo Clinic yesterday to set up an appointment with the neurosurgeon. They have my MRI report and apparently think I should be operated on, but they don't have any of my test results or the MRI film...so I'm not buying it just yet. The hospital called back today to set up a vision field test for the day before my appointment so the neurosurgeon can have those results by my visit. And then they set up an appointment for me to see an endocrinologist at Mayo the day after my neurosurgeon visit. I also set up an appt. with a GYN at Mayo so I can have a whole team of docs there looking at the big picture. This is all going down next week, so it'll be a big week for sure. My vision field test is on Tuesday, then neurosurgeon Dr.P on Wednesday, then endo on Thursday. My GYN visit is the following Tuesday with Dr. K.

Today I went to my current GYN to talk about the Lupron and my little morning problem. She's concerned about the pain in the morning and did a urine culture that we'll find out about in a week or so. She's wondering if it's a recurrence of my kidney infection from 5 months ago, but doesn't a recurrence involve some sort of ceasing and then return of the pain? This never went away... She also thinks I should stop the Lupron because "I've got too much going on". Apparently the Lupron wouldn't have any affect on the test results, but birth control would. So she's saying that I need to stop the Lupron AND not go back on birth control...that is absolutely terrifying. The last time I went off birth control for only three months (and mind you, it was right after a laparoscopy to remove the endometriosis) I ended up on a medical leave because the pain was so bad and I had such a huge cyst on my right ovary that ruptured and wreaked havoc on my pelvic area. That was the reason we started the Lupron in the first place. I've just started feeling like the endo isn't so horrible, and now I'm going to stop all at once? Can't be good. We'll see what happens after she calls my endocrinologist to discuss everything that's going on. I'm glad that she said she'd call him, I like the idea of my doctors working together. I have trouble believing all of this is totally unrelated!

One thing that the GYN said today that sort of threw me off was regarding my reproductive health. Since I was 19 years old and found out I had endometriosis, and then stage 4 endometriosis, I've had doctors telling me that I shouldn't wait too long to try to get pregnant. Can you imagine hearing that at 19? Not healthy! I've been concerned about it ever since. I don't know why I have to be one of those women who really really wants to be a mother, and know what it feels like to be pregnant. Why couldn't I just be a woman who is ok with the idea of not having children. But no, I really want to be pregnant one day. But the odds aren't looking so good. Today I told the doctor that I still really want to try, and I don't want to wait years to do it. She told me that that just isn't an option. She said that I'm young, I have plenty of years. I need to focus on my own health and making sure I'm ok and don't lose years off of my life before anything else. I agree that I need to make sure I'm healthy, but which is it? Do I really have plenty of years? I have endometriosis, Hashimoto's disease, and apparently Cushing's disease...all of which are leading causes of infertility. I know miracles can happen...but if it's already difficult after 30, shouldn't I be thinking the earlier the better? Oh I don't know...

I'm feeling overwhelmed again today. Probably just because I'm setting up more appointments that are pulling me away from work right at a very crucial time in my project. I begin observation next week, and if I'm not there to answer questions and make sure everything is on track, I'm a little terrified of what could happen. Plus I still don't feel like I'm super prepared for the observation to begin. I have a lot of data that I need to analyze and still even pull. It's just a lot on my plate right now, and I'm having trouble not throwing my hands up in the air. ESPECIALLY when I can't sleep at night and feel totally exhausted all day long. I just want to sleep, getting out of bed shouldn't be this difficult. :( At least I have some forward progress with the Mayo Clinic...

Why so much trouble?

So I went back to the doctor to get my test results for the "baseline numbers" he wanted to compare pre-op and post-op. I had done a 24 UFC and a dexamethazone suppression test. I was worried that both would be normal and they would somehow dismiss everything else and send me back to the drawing board. But my family assured me that the doctor had confirmed the diagnosis, said I would definitely need surgery, and this was just a last step prior to going to the neurosurgeon, just to get him more numbers. Well, it wasn't quite so easy, of course.

I was surprised that my 24 hour UFC test came back high. The normal range is 4-50, my number was 69.7. I thought I was feeling kind of better, so I might have normal numbers. I guess my last 24 hour UFC was actually done wrong though, so that's probably why it has been my only test to come back disproving Cushing's...until this: I supressed on the Dex test. With normal cortisol production, dexamethazone makes cortisol supress, or drop down to a very very low amount. In Cushing's, according to my doctor, cortisol doesn't supress. But mine did, to below 1. My doctor said that's very unlike Cushing's, and the neurosurgeons may now want to "wait a while" to perform surgery. What? Wait a while? He didn't say they wouldn't want to perform surgery, or that I was no longer diagnosed with Cushing's. No, he actually said that it looks like I DO have Cushing's, but that they may want it to get WORSE before they go in and do something about it. He in fact said that because I have Cushing's, and because they found a tumor, they would most definitely need to go take it out at some point. And he also pointed out that Cushing's increases morbidity rates...it can be fatal eventually...so I would definitely need to get surgery. But he said that I may need to wait for it to get worse!!! I am blown away. How can you tell someone that they have a disease, that has a possible cure, but that they need to let it wreak more terrible havoc on their body. How can you say that I should wait until I in fact DO get all of the horrible symptoms of Cushing's before I can fix it? What's the point of modern medicine here? There's no point in "finding things early" or being proactive. I'm so confused, and upset. I had actually accepted the idea of brain surgery. I was looking forward to the possibility of getting better with these symptoms that I AM experiencing. I don't want to just get larger and larger, and then get purple stretch marks, and then a buffalo hump on my back. From what I've read, a lot of people look back after their Cushing's diagnosis and realize that it started long, long before. They can think of when they started putting on the weight, when they first saw those stretch marks. Then came the high blood pressure, diabetes, osteoporosis... But they had symptoms before all of that, too. They had the terrible fatigue, exhaustion, muscle weakness, pain, and difficulties with concentration early on. What if we caught mine before the other physical problems start. Can't we stop it now??

I've read that too many doctors rely on that dex test for the Cushing's diagnosis. At least my doctor still says I have Cushing's...so I'm not being dismissed outright. But I called into the number 1 neurosurgeon in AZ to see about getting an appointment, and the appointment scheduler asked if my vision field has been affected. I said I didn't think so, it's just getting blurrier. But I still have peripheral vision if that's what she meant. Well, she said that if I didn't have loss of visual field, I probably wouldn't get in to see Dr. W for a first consult until the end of February at the earliest, if at all. He wants to look at all of my labs, office notes, the MRI report and films, and I have to get a visual field test done and sent to his office before he even decides if he wants to see me. Wow! Because I'm not losing my vision (which can be irreversible once started), then I have to wait...that seems so weird. I know that those who are going blind should obviously get in there and get things going, but I don't think proactiveness should be punished.

I put in a call to Mayo Clinic and they said I could probably get in to talk to a neurosurgeon within a week. So we'll see how that goes. I just want to talk to someone, get a feel for a timeline or something. My endocrinologist told me at my last visit I shouldn't sit on this. Don't wait 6 months before getting it taken care of...well, it looks like that wouldn't be my fault. Oy!

Lupron is still the devil. :) I'm just super mean nowadays. Sometimes I'm good. Sometimes I'm funny, and laugh, and feel like the world is actually just as it should be. And then I'll just flip and somehow decide that everyone, and everything, is working together to make my life more difficult. I haven't decided if I'm going to continue taking it. My endo pain is getting better. I've been exercising more and I feel like I can breathe without all kinds of pain under my rib cage and sternum. It comes and goes. I still have pain when I pee the first time of the day, it radiates up my right side. Actually today that pain wasn't there, and then about 45 minutes into getting ready for work I started getting some bad crampy pain all over my lower abdomen. I went to work and it just got worse as I walked up the two flights of stairs to my desk. I don't know what it is or why, but those two flights of stairs absolutely kill me. Every morning I sit at my desk huffing and puffing after those two damn flights of stairs. And I'll have you know, they aren't even two consecutive flights. No no, one is in the parking garage, and the other is in the office. So I even have time to cool down in between! Ha! Pathetic. But this morning was hard because it hurt more than usual on top of the ridiculous exertion. I guess I need to get back in to talk to my gyn about the Lupron. I wonder if she'll know what Lupron does with the whole Cushing's thing. No one else seems to know. I haven't met with her since a month before my first injection. That's no good.

Alright, if you've made it this far in my post, congratulations...and thank you! Hopefully tomorrow will be a good day. Maybe I'll get a call from the Mayo Clinic to set up an appointment, now that would be a good day :)

Just stay afloat...

I've been...a disaster. I cannot for the life of me seem to escape this stress. It's causing quite a few problems, health wise and of course with Ben and I. I think I'm heading for a bit of a crash, I've been feeling that really really ridiculously tired feeling a lot recently. Last time that started happening, I was out for the count for weeks. I'm gaining a lot of weight, my face is definitely breaking out bad now, and my skin is hurting all over. I just want to get away from it, but I can't. I have to accept it. So difficult.

I feel bad for Ben everyday. But recently I've been lacking in the tolerance category. He's having to cope with all of this, too. I need to give him time and understanding. But I just need to lean on him. I need support, because I feel like I'm drowning. We've been fighting over little things, stupid things. I get upset so easily, I'm really sensitive right now. And then he gets upset that he's upsetting me or that I'm being so sensitive...and then it upsets me that he gets upset...it's a vicious and totally ridiculous cycle. But then he will just hold me sometimes and I feel so much better. I couldn't do this without him.

The Lupron is the devil. Now, don't get me wrong. Nothing has changed. I'm actually getting used to it...which is EVIL! Because now, I'll have a mood swing and I won't notice that it's the Lupron. I'll just think that it's me, and if I'm feeling that way then it must be valid. Wrong! Not valid. It's hardly ever valid...but it's there, and we have to deal with it. Which was fine before when I recognized that Lupron was making me crazy. I have to remember the hormones! And honestly, being on Lupron when you find out you have a brain tumor and have to get brain surgery? That's just wrong. It should be some sort of requirement: get patient off of Lupron, allow chemical menopause to cease, then inform patient of said brain tumor!

I'm also struggling with work. What do I do? I don't have a timeline for when the surgery will be or how long the recovery will take. Apparently it's different for every case. What do I tell them? I'm in this rotational program, will I miss a whole rotation? I'm also knee deep in a controversial project for my current rotation...will I be able to finish it? Should I delay the surgery to be able to finish it? When I'm at work though, I'm totally worthless. I think about this stupid disease all the time...I think about the friggin surgery all day long. I do not, do NOT, want to get surgery again. My last one caused all kinds of problems, now this one is Brain surgery! No good...I'm worried about the pain and the recovery. I just want to know exactly how it will go. If anyone is reading this who has experience with this surgery, let me know what the recovery was like. How long will I be off work? Work is super stressful, and it will be for the next year or so until I'm out of the program...all kinds of projects, presentations... oY!

Ok, I think I need to sleep.

Quick Update

Just wanted to write a quick something to keep everyone in the loop. I have an appointment set up with the endocrinologist for this coming Friday to go over my last test results and to get the information and referral to the neurosurgeon. I still feel like these results are going to be normal for some reason, and I have this awful feeling that the neurosurgeon is going to want to wait to do surgery after we get more positive results...but my endocrinologist disagrees. He said no matter what, surgery is needed. We'll see what happens Friday.

It's been a rough go. I'm super stressed out, not sleeping well at all, and having trouble accepting all of this right now. I finally got out and had a little escape last night with Ben. We went to a bar with some friends and just had a good time, with some good music. It was really what I needed. And I felt a lot better afterward and so far this morning. Plus, the Cardinals just won the NFC Championship...so I love that! Good sports are always ok by me!

Oh yeah, I think I had a small ovarian cyst rupture or leak last night. It was pretty bad for a little bit, but didn't last long which was good. I have no idea why that happened, but I'm just gonna move past it. I have so many things going on, just gotta take it one symptom, one side effect, and one moment at a time...

I may need to change the name of this blog...

To add a new problem. I guess I'm relieved that I have some answers finally, but have you ever noticed that as soon as things start to get better, or you decide to move on, a curve ball is thrown? This feels like a little more than a curve ball...

I had my appointment with the endocrinologist yesterday. I wasn't excpecting anything because I figured any abnormal results would have been relayed to me immediately. I hadn't gotten any calls, so I thought it would just be another "well, let's keep testing- we don't know what's going on yet" appointment. That's not what happened. The doctor came in, shook my hand and I introduced him to Ben, then he sat down and started reading results on his computer. He sat with his back to us reading over result after result for over 5 minutes, in silence. Finally he turned around to talk. Fortunately, I had been reading over his shoulder a bit, so I was at least sort of ready for what was next. He said that they found a 4mm pituitary tumor that is causing Cushing's Disease. So far, all of my tests have been Cushing's positive except for one, and it turns out I may have done that test incorrectly. So, because Cushing's is progressive disease, and the tumor will continue to grow and cause more adverse effects, they have to do surgery to remove it. At this point, I have two more tests they need me to do before I speak to a neurosurgeon, just to get some more baseline numbers. When those results come in, my endocrinologist will refer me to a neurosurgeon he thinks is best. They refer to Barrow Institute, which is apparently a very prestigious neurosurgery institute. I feel good about that at least. The rest of it, I'm still figuring out. I'm glad I have a diagnosis. I'm glad there's an 80% cure rate with the brain surgery. And I'm glad that we found it pretty early. I'm NOT glad that it's not at all related to endometriosis or Hashimoto's disease, and is therefore one more problem I'm going to have to monitor for...well...ever.

I still don't have a timeline. Hopefully I'll be done with these tests in the next few days and then see the endocrinologist again in about a week and a half. At that point, it's going to be up to the neurosurgeon. My endocrinologist told me not to wait to long. The larger the tumor, the lower the cure rate and the higher the chance I'll have to get multiple surgeries to get all of the tumor.

I'll keep updating with anything else I find out. And of course, this is all happening when I was just starting to feel better, and think that I could move on. I JUST started my new workout plan, and I was pretty excited. But, I'll keep working out until the surgery, it can only help.

A couple of days later...

I got my third Lupron injection five days ago...and it's made quite the difference this time! I've had a bunch more hot flashes in the last five days, and almost every night I've woken up totally sweaty. It's not fun. But manageable. And I'm starting to feel a little relief, ladies!!! Wait, what? Am I really admitting that Lupron may actually have some sort of function? Yes, yes I am. So far, the last few days have been pretty good. I even started EXERCISING!! I know, take a moment to re-read if necessary. Exercising! Ben and I went out to the park with a frisbee on Saturday and I had to run to catch it quite a few times. And it wasn't hurting too bad. So we decided, this might be it. We should take advantage of it. So we went for a little mini run together Saturday afternoon. And then woke up Sunday morning to go out for another mini-run. We're using the Couch to 5k running program off of the Cool Running website: http://www.coolrunning.com/engine/2/2_3/181.shtml

I have the podcasts on my iPod and I tell Ben when to start and stop each interval. It's really great for starting a running program with injuries or if you haven't run in a long time...or ever. This is my third time starting the program- I've only finished once. But I have high hopes! :) I also went to the gym tonight for a little more cardio and some upper-body weight lifting. I did low weight, high reps. I don't want to overdo it, but I really feel like I need to hit the ground running (literally) in order to get going on working out again. Otherwise, I'm just going to get back into the "it hurts and I don't want to feel that pain again, so I'll just lay here on the couch where I know it feels ok" routine.

I have my appointment with my endocrinologist tomorrow to look more into my adrenal stuff...and hopefully find out why I have those awful exhaustion swings. We'll see if anything showed up on my pituitary MRI. The lab never sent me the results like they said they would. So who knows. I feel like I would have gotten a call from the doctor by now though if they found something. So it'll probably be another "well, everything looks normal now, so you're fine" doctors appointment. But I'm not gonna just leave the office. I want to find out why I would have high cortisol and aldosterone. And why every once in a while I feel like my muscles are complete mush and my energy level is totally missing. Eh, unanswerable? Maybe.

Lupron Journal:
Gained another couple of pounds since my last post. Have had a couple of bad mood swings as well. Plus, more hot flashes, and night sweats are becoming a regular. But I've seen a decrease in the pain up under my rib cage, and less pain around my right ovary as well. I still have pain in the mornings when I urinate, probably a lot of endo around my ureter like before. Ugh. No migraines or anything though! :)

I'm Back!

What a couple of weeks! That last post was very negative for two days before Christmas, oy! I love Christmas so so much, I'm sorry I was such a bummer. I got better, just had to get that out of my system. Plus, I was missing Ben of course. But he's back now. I went out to Indiana to see his family and had a great time. I got to see where he grew up and meet his Dad. It was a pretty great trip. Then we came back for two days and left again for a 5 day road trip out to San Diego. Ben got to go to Sea World for the first time, he was so cute! We went with my brother and sister-in-law, and my niece and nephew. It was their first time, too. We had so much fun, and it reminded me all that much more just how badly I want my own kids. Yes, my 3 year old niece was acting like a three year old, but that's so great ya know? She's got her own personality, she's this little human- a little girl just growing up every day. And my 6 month old nephew is by far the cutest little boy in the world. He's so good, and so happy. I want one! :) Who knows how my journey with becoming a parent will turn out. It makes me sad thinking that it probably will be difficult, and maybe even impossible. But how can I know when I've never even tried. Maybe it will all be perfect!

I haven't heard back yet about the MRI. I did however get my 24 hour cortisol test results and they were normal. 25.9 with a normal range from 4-50. I don't know what this means because I've read so many places that one normal test doesn't mean anything...but then again, maybe those last high cortisol's were just flukes. It's all so confusing. Hopefully my doctor won't just brush me off because of one test result, I want to find out why I'm so all over the place. I'm not my old self, I miss how much energy I had, how strong I felt. I haven't felt strong in a long, long time. I have an appointment with my endocrinologist on January 13th.

Now onto the endometriosis talk! Third Lupron injection is tomorrow!!! Crazy, I can't believe I've been on this horrible drug for two full months. Now, horrible is definitely subjective. Sometimes I totally abhor the Lupron, usually when I'm crying hysterically about a completely irrational moment, or moments unfortunately. The mood swings are the worst part about this. That and the weight gain. I'm not sure about the weight gain. I've got crazy hormone imbalances related to my adrenals, I'm not exercising like I used to, and I'm stressed out. So the weight gain could be from so many different things. But the mood swings, I know what those are about. They're so very Lupron- they're almost synthetic. They come on so fast, and I'll get set off by the tiniest thing. All of a sudden I'll be furious about something so ridiculous. And then eventually, I'll realize what's going on and start crying uncontrollably. Or I'll cry because I feel guilty, or because I hate fighting with Ben. And then just as fast as it came on, I'll be happy as can be. That's usually because Ben says something or does something completely fantastic and makes me feel like the luckiest girl in the world (I am by the way...). But the worst part is that I can't get out of it until Ben helps me, it's like I don't have any control over it. He seriously is the only way to fix my moods. I probably shouldn't rely on someone like that, we've discussed that side of things, but with the present situation I can't imagine any other way.

Lupron Journal:
Two months down. I still have pain up under my right rib cage, around my liver. When it gets really bad it hurts in my right shoulder, especially if I lay on my left side (like gas pain after abdominal surgeries). I have pain in my lower right abdomen in the mornings, around my bladder, ureter area, sometimes up to my kidney. That goes away usually a few minutes after I go to the bathroom for the first time. It's no fun. I also have pain any time I wait too long to go to the bathroom, and it gets worse the longer I wait. There has to be some endo on my bladder/ureter. Apparently it was totally covering my ureters in my first surgery, and there again in the second. I thought they got it all though. But then again, things got quite a bit worse a few months after my second surgery, when I stopped taking BC pills for three months. I guess it really did come back with a vengeance. I've gained about 10 pounds since I started Lupron two months ago. Not happy about that! And my skin is still a little iffy, sometimes it's fine, but I break out a lot more frequently than I used to. I get hot flashes every now and again but they're pretty quick. And I still think they're funny! My sleeping pattern is so confusing I can't chalk it up to anything. Tired all day, exhausted in the mornings, totally awake at night. Argh.
However, some of those scary side effects I read about haven't showed up at all. I haven't gotten any migraines, no nausea, no memory loss (I think, haha), no panic attacks, no night sweats, and not much additional joint pain. Hopefully it stays this way!