DMV Thinks I'm Not Me

So today I had to go to the Department of Motor Vehicles to get a new license and they were so astonished that I was the same person they had to interrogate me. Good thing I have numerous forms of ID and could answer all sorts of questions. The lady apologized and asked me what happened to me that I looked like a different person. You should have seen the look on her face when I told her I had a tumor in my head and was having surgery on Friday to remove it. I wish it was safe to post the pics since it really shows the difference in four years but it's not really a good idea.

The sad part is that I have to carry this reminder for the next four years...I think I'll lose it and get a new one in a few months!

Anyway, I'm getting very nervous and can't sleep a wink. My heart palpatations are at a all time high and my dreams are horrible. I can't wait till it's over! Tomorrow I get the time of surgery and additional details so I'll be sure to share them. I also have my family arriving...what a busy day.

Ok, off to prep dinner so I can get to bed at a reasonable hour...

4 More Days

It's four more days until surgery and I'm beginning to get nervous. I guess that is an understatement since I haven't slept since I got the date. I mean I guess anyone would be nervous going through all this for so long and then finally getting to a point of treatment. I had my pre-op this morning and that went ok. They once again sucked out my blood and tested my urine and then interviewed me to make sure I knew what was happening and that I was sane.

Tomorrow I get my hair done and Wednesday I need to go back to the thoracic surgeon to check my wounds as they are leaking some strange fluid and blood...almost like huge blood blisters...scary. Thursday my mom is coming and Friday is D-Day...yikes!

Right now I am just surrounding myself with supportive people and trying to not be so nervous but I think I'm failing miserably. It would be easier though if those who doubt the seriousness of this surgery would butt out completely. I'm not even sure I'll let them in after my surgery if they show up...I don't need that type of person around me right now. It may sound selfish but this has to be about me and me getting through all this right now...not about proving I'm sick or anything else!

Ok, off to meditate...

The Cushie In Me

I've been up all night again and my heart has been racing up over a hundred lying down. I feel as if I may have a heart atttack and my mind has a million thoughts all swimming around. Tears sit on the edge of my eyes waiting for me to ball but I have no reason and I'm trying not to because feel silly crying for no reason. I just don't know what to do, I guess I'm having a total "cushie" moment today and for the past few. All I want to do is lay down and rest without feeling like I can't breathe or that the world is swallowing me whole. Maybe it's the impending surgery but I don't really think so since my thoughts range from TV programs I have been watching to things I have no idea about. Almost like hallucinations. But I don't remember things from one minute to the next which lends to even greater confusion.

Other cushies I have found didn't all get better, what if that happens to me? I'm trying to be positive but hen you sit on the verge of tears what is one to think? Every muscle in my body hurts and it's supposed to get up to 100+ today with the heat index which means I'm going to be feeling even worse...I hate to think how many tears I'll shed today and how many embarrassing moments I'll have because I fly off in a rage or forget what I'm doing or where I am.

Thank god for spell check since right now I can't even type or put into words my thoughts and feelings which is frustrating since this is what I used to be good at and do for a living. Everyone tells me to relax but obviously they have never had Cushing's...it's worse than 20 anxiety attacks at once and you have no control. I used to be able to tell people how I felt or write in a diary with my words and now I can barely put a sentence together. It has taken me 20 minutes to write this much and my brain feels fried.

My blood pressure is slightly elevated and my heart rate jumps all over. I hate to think what it would be if I actually moved today if it's already at 100 just lying there. Yet I sit here and think that if I punched a wall or beat the crap out of someone it may let it all come out. Or maybe if I just cut myself it would all leak out....see these are the strange and dangerous thoughts one has while they have Cushing's. You could slice yourself open without realizing it and end up in the hospital all confused because someone finds you lying there. Yet the part of your brain that still works keeps fighting with the irrational "cushie" side in a battle of good over evil and feels as if it's losing.

It's graduation weekend and while others are celebrating life and moving to the next chapter I'm worrying abut whether I'll make it though today. I know that I will but it's such a struggle yet people say the stupidest things because they don't understand or think that you are exaggerating when really you couldn't possibly make this up and since you can't explain it you really aren't telling them half the story.

You can feel it growing like a mutant virus for which there is no cure and no way to slow down. It's eatting your mind and screwing with your heart. And people say dating sucks! The adrenaline/cortisol in my body feels like the Daytona 500 (or whatever that race is since I don't like racing) or what it would feel like to watch your sister or best friend violated with nothing you can do.

I guess that's just the Cushie in me...

People Amaze Me....

you do everything you can to make this easier for people to support you and the bottomline is...they are selfish and would rather say you are being dramatic or too demanding...excuse me but who is the sick one here and who should be taking care of who no questions asked. People disgust me who can't step up to the plate a support a sick loved one...simply disgust me!

We Have a Date

July 1st it is! I just got off the phone with my doc's office and it looks like we are moving ahead a week from Friday. Just how one would like to spend their Fourth of July weekend but hey....at least I'll be getting better sooner rather than later. I have a few more tests to go through so I can have my surgery and those will happen any day now. Last night I had my MRI of my pituitary so that he knows exactly what we are dealing with...at least as much as we can know since this is one of the hardest surgeries out there.

Hmm...right now I feel glad but as time gets closer I'm sure I will start to freak a little more...

Let's Book It...

The next surgery should be booked in the next day or so and hopefully before July 1st...or maybe the first week of July. My doc is great and is even willing to cancel his vacation so I can get my surgery since he knows how long I have waited. They will approach the tumor from my right nostril and then make a cut inside about 2 inches long to get to the pituitary. I may need some plastic surgery after but he doesn't really think so since my nose is of a good size...but he also said not large! I'll be in the ICU for at least the first 24 hours and then home after a couple of days...five at the most.

So what are the risks:

• Blindness
• Death
• Stroke
• Recurrance
• Infection
• Brain leakage
• etc...

I'll also have to have a lumbar drain put in so that my brain and fluids can drain out appropriately and it may be in only a day to months depending on how I do. I have my MRI this coming Monday so we have up-to-date pictures of the tumor. He indicated that mine is a good size and he will try to save my pituitary but could make no promises. I'll then be on 10 different hormones for the rest of my life. He said I should go back to my normal state if all goes well within the first couple of months then it's about letting my body rest and get strong enough to live a regular daily life and getting the medications balanced.

If it comes back then I'll need radiation and another surgery. But I trust him and know that he'll do his best. When he worked at University of San Fran he did six pituitary surgeries a day and while he admitted he's younger than most he also said I'm about 20 years younger than most pituitary patients...so I guess that puts us in the same boat. Anything I need post-surgery he'll do...he promised he wouldn't leave me hanging after he cuts me open which is nice to know.

Wel that's it for now...more later once I get a date!

Put on Hold...

The docs office called this morning and cancelled my appointment. Then they called back later and booked me for 9 tomorrow morning. I guess the doc was called in for an emergency surgery at the hospital. And while I'm glad I'm not the emergency it takes a lot to get me ready for an appointment emotionally. So being a bit selfish I am upset I got moved to tomorrow but I guess I was made a priority patient because they got me in tomorrow for when he has no office hours. I wonder if it means he has booked my surgery and wants to see me this week so we can move on next week? Or maybe he wants more tests? I hope the results of the past surgery are enough and I don't need to redo everything again. I don't know what I'll do if he says that. I mean, I guess I have no choice but man emotionally I'm drained and just want to get on the road to getting better. I just don't know how much I have left to hold tihs all together. I'm in tears thinking about having to hold out another couple of weeks even muchless another month if I have to wait. Just breathing and getting through the day with a positive attitude takes every ounce I have right now...ask my friends. I can't even fake being nice to them when I'm so tired of holding myself together and staying positive. I know I'll get better soon but it's been so long the waiting is torture. I wanna slepp a whole night without waking 10 times to pee and walk to the store or around the block without having to take pain killers. I can't wait to just sit and relax without having to think about feeling better...like meditating myself into a comfortable place.

okay, enough pouting for today...off to nap...more tomorrow...

All Clear...

Well I passed my exam yesterday and recieved the all clear ahead for the next surgery. For a doctor who was fairly standoffish he certainly did an ego reversal yesterday...he gave me a hug and a kiss on the cheek and wished me well...of course he also checked me out as he was telling me that hopefully the next surgery would get me back to "normal." I think he was interested in seeing what I'd look like after surgery. And then I got to thinking about how I make people understand how much I have grown in the past few months.

So here's a little list of measurements and sizes and while they aren't huge and do not really make me a "fat" person when you compare before and now it's quite a change.

• Bra size went from 32/34 inches to 38 and a large B/C cup to a C/D (depending on style)
• My shirt size went from an medium to a XXL or plus size shirt (I think maternity would fit better but I'm too embarrassed to shop in that section when I'm not prego)
• My pants (while still fit in my legs) have grown in the waist from a 4/6 to a 14/16
• Shoes, my feeet don't really fit in my closed shoes anymore so I wear flip flops or Uggs this past winter so my feet could breathe
• Necklaces that hung to a 18 inch length now look almost like chokers
• Rings have grown to a 91/2 or 10 from a 8 (I guess due to my growth hormone levels and not fat)

Kind of astonishing since clothes I bought last fall don't really fit me now and I buy cheap clothing because I hope to go back to my "normal" size after surgery. That''s a lot of inches not including those around my face. So basically the center of my body has blown up into almost another person. I guess 60+ pounds is a good size child. Most people look at me and will say that I don't look that bad but when you compare the before and now and actually see the numbers it makes a fairly strong impact...at least I think so.

Anyway, I have my neurosurgeon appointment tomorrow and will let you know how I make out...hopefully those new clothes from last fall will fit this fall...especially the ones with tags still on them. You see I grew so fast that i didn't even get a chance to wear them all...

Well, off to rest my growing body...

Sickening Weather

I know, I've been MIA again. This heat and humidity is really killing me. At first I wondered if I was just being a wimp but then I contacted other Cushies and found they had similar problems. So now I am under house arrest again since the heat makes me feel even more ill. Even the air conditioning isn't helping me that much.

My head is killing me and I am so nauseous that I get disoriented and don't know which end is up. People ask me why I don't feel good is it my head or tummy or something else and I can't really explain. The only thing I can do is take medicine and try to meditate my way to sleep or out of the sickness. Right now I feel sick but I thought I should write something so people would stop wondering what happened to me. All the Cushies I know are suffering and it's not like we can even say why it is just an overwhelming sense of sickness. I get very disoriented and feel like I can't even stand or speak straight.

I feel bad for people around me right now because I can't even begin to think about being nice or trying to have some fun. I can only concentrate on not being sick all over myself or them. I may be getting dehydrated as well since I am sweating more than my body weight each day I think...and that's only out half of my body. The other day I went for a short walk to get some lunch and by the time I got back half of my head looked as if I just got out of the shower. It was dripping wet. The other half was one dry. Freaky.

I have to meet with both of my surgeon this week. One to get clearance the other to get date set. I'm going to tell him I feel ok because let's face it, I'm not going to feel better till they take this thing out of my head. It's not like I feel bad from surgery. Although my incisions are still open and not fully healed and it's been over three weeks already. That's a bit worrisome but I will live.

Anyway, I'll write tomorrow and let you know how the appointment goes...

Half Sweaty

Ugh, the heat has finally come this summer and the past couple of days have been unbearable. I usually don't handle heat too well but it seems since Cushing's it has gotten worse. I have also started this weird sweating thing...I only seat on my left side. Like you could cut me down the middle. Even in the 90+ heat I sweat only on that side and not the other. Freaky. Yesterday was really hot and all I did was take a short walk and eat dinner outside but it killed me and today I'm not feeling my best. Plus you look kinda freaky only sweating on one side and not just sweating...dripping in sweat on one side. I think people notice. It's almost like I took a shower on that side and left my hair wet only there.

Well I'm gonna go enjoy my air conditioning. My next appointments aren't until next week so this week we just wait. I did email the doc and tell him about my half sweat...he thinks it's my pitutary tumor as well...it could be growing and changing making these weird things happen. Oh well, have a good day!

Cut & Paste

I'm not sure what to say anymore as I think you have heard it all before from me. I could cut and paste myself over and over but I think you might get bored. Maybe you already are?

Well I guess I can tell you I have an appointment next week with the thoracic surgeon again to get the all clear from my pituitary surgery which would happen a week or two after. And while I should be excited I'm just tired of waiting and still sit here and wonder if it will ever really happen and if I will ever be myself again. For those of you who know me, I'm definately not a cut and paste type person. I keep thinking things will move faster but it seems that this thing needs time. And then I'll need time to recover and time to move on with my life and just more and more time. I guess I can cut and paste the same things across my to do list and calendar for the next year.

I feel like I do that wth the clothes I have that fit too. I keep trying to find ways to make a new outfit with the few clothes I have that fit and basically cut and paste the same thing on each week. I have a couple of randomly colored shirts that I may layer differently but basically it's all the same. I am trying not to buy too many more "Cushie" clothes since I hope in the next month or so I won't need them...but summer's hot weather makes it more necessary to change clothing more frequently than winter. Plus I keep oozing all over my shirts everyday. Gross!

Hell, I even get called by the same companies for jobs as I have in the past. Must be a cut and paste career too. I haven't called them back yet and have called a couple but never know what to say. DO you say, sorry I have a brain tumor and hope they want you when it's over? Or do you play it off nicely and lie about being happily employed hoping they don't find out that you're on disability and have been for a few months? Any bright ideas? I'm thinking of a slight careeer alteration when this is all over...we'll see.

Today I did get the IRS to back off from me paying my taxes I owe them...I guess that was something different and not so cut and paste of me. I hope that the weather gets nice for the weekend so I can mix it up. Or maybe it will rain one day and not the next so I'll force myself to do something different. Tonight I'm going to try and go out for dinner without running out in the middle (like the other day). It's a new restaurant in town so I guess that counts too.

I guess life isn't that cut and paste right now it just seems it....