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!

Day Seven of Cushing's Awareness: Los Angeles, my city of Angels.

When I got home from that most devastating Endocrinologist appointment in St. Louis I put my research cap on.  There were two doctor's in the Cushing's community that were considered to be the experts in the country.  I decided Dr. Friedman was by far the one that would fit me the most in terms of his testing methods. I was sure that when I had highs they were at night and that I was bottoming out during the day.  I needed someone who believed in Cyclical Cushing's and knew how to test for it.  Dr. Friedman has tests set up perfectly for someone like myself.  Most Endo's only collect a 24 hour urine cortisol, where as Dr. Friedman does a 10 hour that is from 10 at night until 8 in the morning.  This is an excellent way for someone like myself to catch the highs.  Also he does other tests that most Endocrinologists don't do that check to see if recently your body had been high with cortisol.  This was one of the tests the I scored high on, even when my pee tests would come back normal.

Once we got our tax refund back I decided it was time to take action.   I booked the appointment and got everything set to go to Los Angeles on June 6th, 2011.  It never would have been possible if it weren't for the help from my family.  I am forever grateful to them.  I spent days working on getting all my past medical records together in a huge binder, collecting photos to show Dr. Friedman and just getting myself ready to go to L.A.  I was scared to death, yet I was hopeful.  What if he told me I didn't have this?  Was this my fault somehow?  All these questions running through my mind.  I was having a hard time just leaving my children behind for five days to head out there.  I had never been away from my babies before, but I knew if I didn't do this they may not have a mom around anymore.  I had to put on my big girl panties and do this.

I remember the feeling as we were starting to land in Los Angeles.  I was so overwhelmed with raw emotion.  I teared up and thought to myself, this is it.  Everything I have been through has led me to this city.  Would it live up to it's name as the city of Angels?  Everything went perfectly once we arrived.  Very odd things happened that I cannot explain, but I felt surrounded by Angels.  A song came on the radio that I associate with my Grandma who passed away.  I was very, very close to her.  This song was very old and there was no way it would just randomly come on without it being a sign from above.  I felt immediately at peace and knew that I was in the right place.  On June 7th, we arrived at Dr. Friedman's office.  My hubby took a pic of me in front of the sign with Dr. Friedman's name on it. Cheesy, I know but this was hopefully going to be my life changing experience.  We arrived way too early so we just hung out until it was time to go in.  I felt complete panic walking into his office. I was greeted by Dr. Z who immediately almost put me in tears.  He said, "Let me guess, you have been sick for at least 5 years, have seen multiple specialists and they have all told you it was in your head?"  I nodded as the tears began to well in my eyes.  He said "I can tell just by looking at you that you have this disease and that you will finally be taken care of."  As I write this I am still overcome with emotion from those words he spoke to me.  Someone finally could see what I had been trying to say for years.

He took all my vitals and wrote that my pulse was high.  Another symptom of Cushing's.  I rarely have a pulse below 100.  I then returned to the waiting area until Dr. Friedman was ready to see me.  He called me back into his office and immediately turned into this nervous mess.  How could I feel calm when my life was on the line and "The Wizard" was right in front of me asking me questions.  He asked me about my story.  I told him.  He looked through my files and of all the sheets in my file he took all my high results and my IPSS results.  He then wanted to see my MRI cd that I brought with. I watched him load it on to his laptop and then he said to me...."And they read this as normal?"  I instantly felt a lump in my throat.  He turned around his laptop and pointed to me on the screen two areas he believed were tumors.  Then a minute later he decided there was a third.  At this point my brain was racing.  I could hardly speak.  I was so overcome with emotions of anger, fear and validation.  He feared that the type of tumors I had may be aggressive because of the way they were showing up on film.  He also examined me and said that he believed I did have Cushing's and he also believed I was growth hormone deficient.  He gave me a battery of tests to do once I returned back to Illinois and a plan of attack for testing.  Someone BELIEVED in me!  The following day I was set to have another brain MRI at Cedars Sinai on a 3 Tesla MRI machine.  It's considered to be the best imaging source for MRI that is out there right now.  He also put me on some Vitamin D drops because mine is low and also wanted me to start taking L Glutamine twice daily to try and build up some of the muscle I had been losing from being sick with Cushing's.  After meeting with Dr. Friedman they drew some blood and I was free to go.  I walked outside and just started crying.  After I regained my composure I phoned my parents to let them know what had just taken place.  My mom, bless her heart was a mess.  No one wants to hear their child has brain tumors, but to me I was overjoyed.  I know that sounds absolutely crazy to a normal person, but to someone who has been sick and knew it was just a matter of time before it reared it's ugly head, it was a target.  A target to evict and hopefully give me my life back.

I did the MRI the next day and spent a few more days in Los Angeles before heading back home to Illinois to begin my testing.  The testing included multiple 24 hour urine free cortisol tests, multiple salivary tests to do at 11 at night or later, 10 hour Urine Free Cortisol tests and he would also check for hydroxycorticosteroids aka 17OHCS which is what would show if I had recently had a surge of cortisol in my system.

It took roughly a month of testing to complete all the tests he wanted me to do.  I would do tests basically 4-5 days out of the week.  I was tethered to the house for the majority of my testing, because collecting urine for 24 hours is not fun to do anywhere else.  Who am I kidding?  It's not fun EVER at any place!!

So in the meantime I waited for all my test results to come back in, got my MRI results which showed several areas where the contrast did not go through, but they couldn't say for sure there were tumors.  Dr. Friedman wanted me to send my MRI off to Dr. McCutcheon in Houston.  He is considered to be one of  the best Neurosurgeons in this field and amazing at seeing what most miss on the MRI's.  So I shipped off my MRI's and began the waiting game.

I  received an email from Dr. Friedman's office stating he would like to have a phone appointment to discuss my results and a plan.  I figured this meant how we were going to proceed with testing.  I had a sheet of paper with questions to ask.  Could I do midnight blood draws so that I could have those highs as well?  I know that I needed highs in at least three different testing areas for him to confirm I had Cushing's. As far as I knew I had only one test come back high so far, but had not seen all the results yet.  I set up the appointment and waited for the call with my questions in hand.  I was prepared to do as much testing as it took to prove I had Cushing's.  I was not prepared for what took place during that phone conversation.