September 2007- June 2010

Well after having multiple people suggest to me that I should write, I have finally decided to start a little blog. Mostly, I have this to just get my thoughts out and ramble about what I am going through. I also have this so that I can look back and remember everything that I have survived.

In November 2006 I started to notice the main symptoms of this disease. After a year of going to the doctor, (which is much shorter than a lot of other people who have Cushing’s), and tons of blood work and lab tests, my primary care doctor finally sent me to see a specialist. The doctor she sent me to was Dr. Livermore, an Endocrinologist. I made a huge list of things I had noticed over the last year that were weird to me. My feet were always swollen, I was gaining a lot of weight (80 lbs in nine months), my hair was falling out, I was a lot more emotional, I was constantly exhausted no matter how much sleep I got, I was always sore and achy, and a few other strange things. I met with Dr. Livermore for the first time, in September 2007. I had just began my last year of college and was excited to be done. I gave her my list of symptoms and she interviewed me for an hour asking me about the different symptoms I was having. I had been tested for a year for a thyroid disorder and was told I needed to exercise and diet if I wanted to lose weight. At the time I was going to Weight Watchers and no matter what I ate I would gain weight. I expected Dr. Livermore to tell me that I had a thyroid disorder and that I would be on pills for the rest of my life. Instead, with my mom sitting in the room with me, the doctor felt my thyroid gland, said it was totally normal and then told me that I had a very rare disease called Cushing’s disease, that it was caused by a brain tumor and the only way to fix it would be brain surgery.  Then the doctor left the room and my mom and I looked at each other in shock and I broke down crying. My mom and I left the doctors office and my dad was waiting for us in the lobby. I looked at my dad and couldn’t speak. Finally I got out, “I have a brain tumor and I have to have surgery.” The three of us left the hospital and since then my life has been very different.

I started doing a ton more tests including a 24 hour cortisol test, and high dose and low dose suppression tests. I had an MRI and they found a 5mm tumor on my Pituitary gland and from there I was referred to my amazing neurosurgeon Dr. Banerjee.  They wanted to do the surgery quickly and the first opening was at the beginning of November , but , for those who know me I am a huge fan of Jewel and had  already bought tickets to see her in concert in the middle of November, so I had the doctors postpone surgery so that I could see Jewel in concert.  I left school three weeks before the semester ended and was hoping I would be able to start my last semester feeling better. I had surgery on Dec. 5, 2007 and was in ICU for 5 days and then released into the regular hospital for a day. Surgery went ok but I had a hard time remembering a lot of things during that time like how to walk and what happened while I was in the hospital. I had a physical therapist help me remember how to walk and climb stairs. After being released from the hospital, you would have never guessed I had just had brain surgery.  I was out Christmas shopping and felt great, besides some really killer headaches.  Within a few days of being released I ended up in the emergency room because of dehydration. I had developed diabetes insipidus. This is, I guess a common side affect after surgery where your kidneys are unable to conserve water and you can become very dehydrated. This is caused by the damage to the pituitary gland during surgery. After that was better and about a month after surgery some of my medications were changed to see if my adrenal glands would start working and I ended up being in bed and having absolutely no energy. I spent about a month in bed. It was a huge task to even take a shower or get up to go to the bathroom.  I had no energy at all. I went back to school in January 2008 to finish and was so sick that with the understanding of most of my professors I spent more time at home in bed than actually in class. A dear friend of mine, who I had a lot of classes with, would bring me homework assignments and help me turn assignments in. I graduated in May 2008. As my medications started getting more stable, (all 18 different meds), I started getting more energy and by Aug 2008 I was off most of them. Because I started getting better, losing weight and they were successful at getting the tumor I was considered cured.

In August 2009, I started noticing some of my symptoms coming back again. I had lost 45 pounds since surgery, but then I started gaining weight again and was getting more emotional. My hair started falling out again as well. I e mailed my endocrinologist and told her what was going on but to my surprise this time she said that Cushing’s rarely comes back and that I was cured so that it was not Cushing’s again. She was my doctor, and I was not going to argue with her but I had a very strong feeling she was wrong. A few months passed and in December 2009 I had a conversation with a friend about how if I really felt like something was wrong I should really have another talk with my doctors.  I have to have an MRI every year and normally it is every March, so I e mailed my surgeon and asked if I could have the MRI in January because I felt like I was having symptoms again. He had no problem with it and scheduled it for the beginning of January. After the MRI he called me a few days later and said he could not see anything. I was so happy, but also frustrated because I really felt like something was wrong and once again I did not have an answer to what it was. Then he told me that with Cushing’s you can’t always see the tumor on an MRI so, even though he couldn’t see anything didn’t mean nothing was wrong. He spoke with my endocrinologist and began running tests again to see if I had Cushing’s for a second time.  This round was much, much harder for the doctors to diagnose. I went through a lot of the same tests and none of them made any sense to my doctors. After lots of tests, some of the results started showing that the Cushing’s was back. I had another MRI and did the low dose and high dose suppression tests again, as well as the 24 hour cortisol test, multiple times.  Because the doctors could not see the tumor they had a hard time wanting to proceed with surgery until they were able to tell at least what side of the Pituitary gland the tumor was in.  At this point it seemed like I was getting really sick really fast. I was super weak and could barely do normal household chores, like dishes without starting to cry from back pain. I had to buy a special bed because just laying in bed was painful. I was exhausted and getting lots of bad headaches. My doctors decided to do what is called a venous sampling to determine what side of the gland the tumor was on. I had my venous sampling at the beginning of May. This procedure is so rare that the medicine that is used for it was not available so they had to postpone the procedure for a week. The nurses also mentioned that at the hospital I was at, this procedure had not been done for more than two years. For this procedure, a catheter was inserted into my femoral artery in my leg, up through my chest, into my jugular and into my brain. The purpose is to take samples from the right and left veins that come off of the pituitary gland to see if tumor cells are present. When the doctor got into my brain the vein on the right side of the pituitary gland was missing so they were not able to determine what side had tumor cells present. This procedure lasted about 2 hours and I was awake the whole time.  After this, my second brain surgery got scheduled for June 29^th 2010.

More story to come… leave questions or comments 🙂