Monday, April 9, 2012

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 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!


  1. Your surgeon sounds cool. I felt confident enough in mine because he had experience. He may have been one of the few in my State. My family clinic recommended him and I know my family physician was trying to make up for not believing I had Cushing's. Pit surgery sounds more complicated though. Wow

    I can definitely understand the dilemma about when to have surgery and when not to. I felt like it was either too soon or too late between school and how quickly it went from CAT scan, to meeting the surgeon, to a surgery date. I don't know how scared you were but I was faint when we met the surgeon. I wanted nothing to do with that hospital. And there weren't enough anxiety drugs in the world to keep me from freaking out beforehand, despite my best friend being there.

  2. I tried all sorts of neat places to eat in Houston when there, and even went to see a movie once! I wish I could have had more time to see the city -- medical tourism for the win!