Day twelve of Cushing's Awareness: Released from my chains

On Sunday evening one of the Neurosurgeon's came in and told me it was time to remove the balloons (nasal pledgets) that had been placed in my nose after the surgery.  Basically they put these tampon looking things up there and inflate them so they keep pressure on the wound area so that it could seal itself shut and prevent a cerebral spinal fluid leak.  They are extremely annoying.  You can't breathe, they put intense pressure inside your sinuses and overall they just stink.  I was looking forward to getting them out.  I had heard it could be pretty painful and that sometimes a lot of blood and ooze would flow out.  He deflated them and pulled them right out.  It hurt for a half second, but the only thing I could honestly feel was relief!  I leaked out some blood and gunk, but really it wasn't much at all.  I still however had no sense of taste or smell. I also got to get two of my three I.V.'s taken out.  I had one on my left hand, one on my left forearm and also had an arterial line in my right wrist.  I am so glad I was asleep when they put that one in, as that is the same type they tried to put in when I had my IPSS the previous year and failed.  I have three scars in that area, so I'm guessing it took them three good tries before they finally were able to get it in. 

As time passed I felt a little bit stronger.  I was able to shower daily and get up a little more to do my rounds around the nurses station.  I had the most lovely nurse on one of the night shifts.  I will never forget her. She was an angel on earth.  We talked about everything I had been through and she was just the most sincere and beautiful person. She told me about the other patient who's story was almost identical to mine and that she felt it would be a disservice to humanity for us not to meet.  She asked if it would be okay if I popped in and they agreed.  So, I put on my robe and hubby and I ventured across the nurses station and there I met a new friend and her sister.  They both have Cushing's Disease and her sister had previously had this surgery with Dr. McCutcheon, but was not cured.  I was in awe of meeting not one, but two people with Cushing's and they were siblings.  I shall refer to my new friend as "B." ;)  She seemed to be doing pretty good recovering and was going to be released that day.  I should have been released that day as well, but while standing there talking to them I started to feel extremely sick.  I broke out in a cold sweat and thought I was going to pass out.  I apologized and told them I had to go lay down and to stop by before they left.  

I don't really even remember going back to my room, but I think what happened at that point was that my cortisol crashed.  After surgery they want to see your numbers drop drastically.  It doesn't always happen though.  Honestly, I still haven't seen any post op blood draw numbers except day 3 and 10 and neither of those were as low as I would have liked.  I believe at that point mine plummeted and put me into adrenal insufficiency.  I also started experiencing something called Diabetes insipidus.  I was basically having more urine output than the amount of fluid I was taking in.  I know I was constantly drinking something after the surgery and the need for ice chips the night of the surgery was intense.  I couldn't get enough.  They decided I needed to be kept at least another day for observation.  I was glad to be there another night.  I didn't feel like I was ready to go back to the hotel just yet.  They had the most comfortable hospital beds on earth.  I have never had a hospital bed be comfortable, but these things inflated air in different areas every time you moved so that it was always maximum comfort.  I still want one of these at home! LOL  

The following day which was Tuesday January, 24th they decided I could most likely be released.  I went ahead and got showered and ordered my lunch.  While sitting there eating I noticed if I ate really hot soup all of a sudden I could taste and smell.  I was excited that my sense of smell and taste were returning, even if it was only a small amount.  This was a good sign!  They said it could have taken a month or even longer, so I'll consider myself lucky.  An hour later I was released to go back to the hotel.  It felt weird to be free after having brain surgery.  We went to the hotel and I got on my laptop then I started feeling icky so I laid in bed.  My hubby the saint went to do some laundry while my mom babysat me. lol  I told her I wasn't feeling well and that I was starting to feel really, really cold.  I fell asleep for a while and when I woke up I was absolutely freezing.  I was shivering and chattering my teeth.  When I stood up some blood started dripping out of my nose.  It scared the crap out of me.  My mom said I was snoring really hard, so hard in fact she decided to take a video of me!!!  grrr mom! lol   What do you expect?  I couldn't breathe out of my nose yet! I looked at all my release papers and it said if I spiked a fever higher than 101 that I needed to go to the E.R.  My mom and her hubby left to go buy a thermometer.  I was pretty sure I had a fairly high temp.  They came back and I was running 101.9.  Ugh.  I was a bit worried I had some massive infection starting in my brain or something crazy!  No one really knows what to expect when things don't go as planned after such a major surgery.  We called the emergency hotline for the Neuro department, but no one ever responded so we packed up in the car and went to the E.R.  They got me in fairly quickly, took a ton of blood, did a urine test and a blood culture.  They gave me some pain meds and dosed me with two different types of very potent antibiotics. They had me sit forward to make sure I didn't have a cerebral spinal fluid  (CSF) leak, checked to see if I was overly sensitive to light.  I was a little sensitive, but nothing too bad.  Then they hauled me off in the middle of the night for a CT scan to make sure I wasn't hemmorhaging inside of my brain from the surgery.  Everything looked as expected for just having surgery four days prior. 

Apparently since I had left earlier in the day the whole hospital had filled up with patients.  They were going to readmit me, but had no beds.  I spent the entire night in the E.R. on this horrible E.R. bed.  My back was killing me!  This isn't exactly how I planned on spending my night.  My mom had to catch her flight back home that morning as well.  I had to say goodbye to her while I was still stuck in the E.R.. She didn't want to leave, but I told her to go ahead.  I would be okay!  Everything checked out okay, but no one knew why I was running this fever.  Finally later that morning or early afternoon they had a room for me.  They opened up a floor just for myself and overflow patients.  I got an awesome room with a nice view.  They just kept me there for observation, gave me more pain meds and kept me comfortable.  The following day I was released for good.  This was Thursday January, 26th.  I was actually feeling pretty darn good that day.  The best I had felt in a long time.  Hubby and I drove around Houston a little and I saw a Whole Foods Market. I have always wanted to go to one, so we stopped.  I don't know what the heck I was thinking, but within minutes of getting inside I thought I was going to pass out.  I clung on to the cart for dear life and made it through most of the store.  I was determined I was going to do this!  I got some awesome chapstick, some coffee to take home and we left.  Later that night we went back out.  I didn't want my last night in Houston to be stuck in the hotel.  I'm not stubborn or anything, really.  We ended up going back to the Cheesecake Factory.  I went there two nights prior to my surgery with my Uncle and my cousin.  They had valet and an elevator so I could get in easily without having to walk far.  It was nice to feel almost human again.  I was alive and eating at the Cheesecake Factory and I had brain surgery less than a week prior.  Awesome!

The following day we flew back to Illinois.  I was a little nervous about how I would handle the airport and the flight.  I had to be in a wheelchair.  I HATED being in a wheelchair, however I knew I was not capable of walking around the airport so I grudgingly did it.  The pressure in the plane wasn't too bad.  My head was hurting a little bit.  I stress dosed with some hydrocortisone and everything seemed to be fine.  We made it back into Chicago and my dad picked us up to take us back home.  It was good to be back in Illinois and especially great knowing my babies were only a few hours away!  We stopped to eat dinner and then headed home.  My dad had bought us some groceries and stocked my freezer with meat and all kinds of other goodies.  Once we got home and got our car we took off to my sister's house to get my babies.  We didn't ring the doorbell, we just walked in.  My babies lit up like a Christmas tree!  It was heaven.  I just held them in my arms and sniffed them.  Everything I just went through was worth it in that moment.  I was alive and I was back with my babies.  We packed up the kids, all of their belongings and headed back home as a family. :)  I figured that recovery wouldn't be too bad at this point.  I was feeling pretty good minus some headaches and being a bit nauseous.  

I am forever grateful to my sister for taking such good care of my kids while I was away.  We were able to Skype several times during my hospital stay, but I cannot tell you what a relief it was for me knowing that they were being taken care of and loved as if they were her own children when I couldn't be there.  Thank you, Ash!  

Day nine of Cushing's Awareness: My new birthday?

After getting my official diagnosis I continued researching Doctor's who specifically dealt with Cushing's tumors.  Not just any Neurosurgeon will do for a job like this.  Sometimes a Cushing's patient will have a nice well defined tumor.  Those are the ideal ones.  They are easy to remove, most likely leave behind no residual tumor cells and the patient is more likely to have a remission and possibly a cure.  Then there are the tumors that are more spread out.  Just by looking at my MRI it was pretty certain to me that I didn't have a well defined one.  I had three areas of interest and with that comes a term no patient with Cushing's disease wants to think of, hyperplasia.  There is a chance with hyperplasia that the bad cells are pretty much spread throughout the pituitary and mixed in with the good cells.  All it takes is one evil tumor cell to remain to keep us sick or start regrowing a new tumor.  I needed someone who knew the difference in appearance of these type of tumors, is experienced and had performed this surgery many, many times.  I also read a lot of experiences that others had with surgeons on the Cushings-help.com boards and other types of Cushing's groups.  

I made my decision to go with my first instinct which was Dr. Ian McCutcheon at the MD Anderson Cancer Center in Houston, Texas.  I still hadn't even had my MRI read, but Dr. Friedman was pretty confident it was all there.  Dr. Friedman went ahead and got my referral sent off and the very next day MD Anderson was calling me to set me up in the system.  Talk about excitement and nerves!  They took down all my demographic information and then told me that the person who booked the appointments would contact me the following day.  The following day came, and indeed they called.  My surgery was booked for Friday, January 20th, 2012.  Was this going to be my new birthday?  A new lease on life?  So many thoughts spinning through my head now that I officially had an eviction date for the "Three Stooges."  I decided to hold off until January because I didn't want to be recovering for my daughter's sixth birthday and also my little sister was getting married on New Year's Eve.  Everyone told me to go ahead and do it, but my gut reaction was to wait.  I am extremely glad I did.  Every single day I was getting worse, but at least I was physically able to be there for the holiday's and my sister's wedding.  Plus, at my sister's wedding during her maid of honor and best man speech decided she was going to do a speech herself.  This speech was about me, and how grateful she was that I was  able to be there for her special day and the fact that I put off my surgery to be there.  She had over two hundred people praying for my well being during the next few weeks ahead and also in my recovery.  It was one of the moments in my life no matter how bad my memory gets, I will never forget.  I was deeply touched and I'm still pissed at her for making me cry in front of people. ;) *Love you, Ash!*

I got everything finalized for the trip and on January 17th, we left for Houston, Texas.  It was a very difficult day for me.  I left behind my two babies with my sister and kissed and hugged them all goodbye.  I broke down when we left their house without my kids. I honestly wondered if it would be the last time I saw them. I know that sounds morbid, but having this disease and thinking about having brain surgery makes one think some very, very dark thoughts.  Would I be functional again?  Would my husband be able to handle them alone if I were to die? How would my daughter cope without having a mom as a teenager when she needed me most?  Just writing these things puts a lump in my throat and takes me back to those thoughts and I hate that I have even had to worry about such things at such a young age.

Our flight went smoothly and once again once the city lights came into view I got overcome with emotion.  This was where my life was going to change.  It was really happening.  I was going to finally get these bastards out of my head that had been making me sick for so, so long.  

The following day my Uncle and Cousin joined us. They were my own little angels during a very, very scary time for me.  They kept me in tears from laughing so hard.  I honestly don't know how I would have made it through those days prior to surgery without their comic relief.  I will forever be grateful for having them and the fact that they drove all the way to Texas to be with me.  I love you, Uncle G and little G!  My Mom  and her husband showed up later that night as well.  There is no way I could have managed this without my Momma.  However, I'm pretty sure she was more worked up and nervous than I was!  

On January 19th I had to be at the Clinic at 8 A.M. for blood work and then to meet with Dr. McCutcheon.  Now came my time for being nervous.  I was an absolute mess the hour before meeting with him.  I was about to meet the man who was going to be digging around inside my skull the following day.  That is a huge ordeal, let me tell you.  They called me back to take my blood pressure before meeting with him.  It was pretty darn high, scary high in fact.  I explained it was from stress and I am not normally running that high.  I went back into the waiting room and then they called my name.  I seriously thought I was going to throw up. My husband, mom and I all walked into a room and waited for Dr. McCutcheon to come in.  We didn't wait very long and then I heard the knock and then he entered the room with his assistant.  I was immediately overcome with a flood of emotions.  I had seen multiple pictures of him and had been researching him, yet here he was.  Right in front of me.  He started reading through all my notes and we started talking.  I instantly felt a sense of calm wash over me.  I knew once he began speaking that this man was 100% the right choice.  He was funny, super intelligent and extremely compassionate.  I have never in all of my years being sick, met a Doctor like him.  He loaded up my MRI into this machine and we read it together.  This was his first time seeing it as far as I know.  He would adjust the contrasts and showed me all the areas that had been seen before.  It truly was an experience watching a genius in motion.  He would stop and show me exactly what he saw and explain that these were not normal tumors.  He explained everything in such great detail so that I felt completely educated on the films myself.  We then discussed how he indeed felt this all needed to come out and that we would continue with the surgery as planned.   He then went over every detail of what would be done to me and he even personally read through every consent form and handed me his own pen to sign them with.  This was by far the most personable Doctor's appointment in my entire life.  I thanked him and told him to get plenty of sleep that night..LOL!  Immediately after the appointment they took my blood pressure again and it was completely normal.  That is the amount of comfort Dr. McCutcheon gave me.  

We were able to leave the clinic and we decided to go out and have a fun evening in Houston.  I picked out this lovely German restaurant to have my last meal at and of course had to hit up a Starbucks afterwards.  I love my family and am so grateful they were there with me during those days prior and after my surgery.  I am blessed to have them. I skyped with my kids and told them how much I loved them and tried to get some rest. I was surprised how easily sleep came to me that night.  The following day my entire world was going to change.  I was giving Cushing's Disease the boot!