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So after my appointment in Redwood City, my boyfriend at the time suggested we drive over to Half Moon Bay to hang out at the beach for a while and avoid the evening commute back home. That night he proposed to me on the beach while the sun was going down. It was the best night of my life. We decided to have the wedding soon because I knew the radiation would start  making me sick within about six months and I did not want to be too sick to enjoy our wedding. I started planning right away while recovering from brain surgery and radiation We had an amazing engagement party, thanks to my incredible parents.

In September 2012 I went back to work. Keep in mind, I’m still recovering from my brain surgery, still recovering from radiation, starting work again, all while continuing to plan the wedding. And most people think just planning a wedding is stressful! Whoa, I was a busy lady.  Within a few weeks of going back to work I got scheduled to have a sinus surgery. Each time I have a brain surgery, they go through my nose to get to my brain. During the surgery, they break my nose then cut open a section of skull behind my sinuses and get to my brain that way. It is way better than cutting my forehead open from ear to ear but it has its own downside. Because I have my nose broken each time, and there are all sorts of instruments they use during surgery that go through my nose, my sinuses get pretty damaged. I had sinus surgery in October 2012 and a month later we had our wedding. By the time the wedding was over, Thanksgiving was over and we were home from our honeymoon, I started to feel sick again. I called my neurosurgeon and told him how I was feeling. He said this was great news and it probably meant that the radiation was working and that I would get much more sick before I got better. Although that seems backwards, it was true. As different functions of the gland stopped working it would make me more sick, but then I could take medication to regulate things and feel better again. I thought ok, I can deal with that. I knew it wouldn’t be easy but this was just one more hurdle I would get through.

At this point the term hypopituitarism was thrown around. Hypopituitarism is when more that one hormone in your pituitary gland does not work right. I was there. My ACTH and thyroid levels were not working and then I found out that the hormones that made it so that I could get pregnant stopped working as well. So after all this, surgeries, radiation, my body not working right, I lose the ability to have children on my own. Damn I hate this disease. All I have ever wanted was to be a mom. My major in college was basically how to be a housewife, (not really but it was all about family). I have always wanted to meet the man of my dreams, get married, have children and have a happy life. Now not only have I lost the last 5 years to this stupid disease, I can’t have kids on my own even if I wanted to. There was a small hope that fertility treatments would work, but it was small and expensive. Right about this time I started noticing that everyone around me was getting pregnant, or having a baby or having their second or third baby. Although I was happy for these people, it hurt so so bad.

I try pretty hard to stay positive about everything I have been through. I strongly believe things happen for a reason. I know that there is a purpose to what I am going through. I haven’t quite figured it out yet but I know there is a bigger plan. I have seen so many times that something that devastates me or something that doesn’t go exactly how I wanted it to, always ends up turning out better than I could have thought, and always ends up teaching me something. God’s timing is pretty amazing. I know he sees the bigger picture in all of this but sometimes I have bad days. Sometimes I wonder why. I don’t often ask why me, but there are times when I just really don’t understand why I have to be going through so much pain while other people my age are not even aware of how good they have things. How lucky they are to not be sick.

I have lost so many friends since I first became sick. People who I was very close to stopped talking to me. They stopped being friends. I learned quickly that if someone didn’t know what to say or how to respond to what I was going through, they just said nothing or did nothing. I don’t need people to feel sorry for me, or to feel bad, I just need people here for me. I need a text or a card or a phone call to let me know they are thinking of me. I need a hug, or a visit to say hi. I don’t always have the energy to be the most exciting friend but just because I am sick doesn’t mean I can’t be a good friend. Just because I’m not going out all the time doesn’t mean we still can’t hang out. Besides losing a lot of friends, I have also been blessed by learning who my best friends are. People who I barely knew when I got sick, that completely stepped up and did everything they could to help me and be supportive.  People who I can always count on to be a friend even when I’m not being the best friend I could be. They understand that I’m not always feeling good enough to go out or even get dressed some days. They understand that I have a hard time planning for fun things because I never know how I am going to be feeling from one day to the next. They have been the best people. When I am having a rough time, and they haven’t heard from me lately, they make contact with me and it lets me know they aren’t forgetting about me. Thank you to those few people who have stuck by me even when I’m not super fun to be around. You have no idea how much you have meant to me.

So as April 2013 started getting closer, a year from when I had radiation, I was still feeling really sick. There was no sign of me feeling better. I knew in my gut something wasn’t right but the doctors had told me I should expect to be sick so I just went with that being the reason I wasn’t feeling good. I took a leave from work in April for what I thought would be two months. As I was off work, I just kept getting worse. Finally, I contacted my doctors and had them run my labs again to see if there was any improvement with anything. Much to all of our surprise, not only were things not improving, but my levels were actually getting worse. My endocrinologist and neurosurgeon were both really confused. They knew I would be feeling more sick, but it was not normal for my actual labs to be getting worse. They consulted again with a ton of doctors. Tons! They contacted the radiation oncologist who had done my radiation and asked for his opinion. He said that although the radiation might take 5 years to fully kill everything, there should be some improvement a year after treatment. Because I was getting worse it was determined that the radiation had failed to kill the tumor. At this point the doctors started wondering if I might have ectopic Cushing’s disease, which basically means there is a tumor somewhere else in my body, or in a part of my brain they had not already cut out or radiated, that could be secreting the excess ACTH.

Never have I said this disease was easy to understand. Sometimes after all the research I have done, and living with the disease for so long I feel like I am more of an expert on the disease that most doctors I come in contact with. I have even had some doctors tell me that I probably know more about it than they do.  I’m not sure if I have mentioned this or not but Cushing’s is a very rare disease. Roughly 5-10 people out of every million people have been diagnosed with Cushing’s. At this point, I have had multiple doctors tell me that I am probably 1 of 10 people in the world…the entire world….that have a case so rare. That makes thing’s very hard for a number of reasons. First because it is a rare disease, there is not much information for doctors to rely on when it comes to the best treatments for this disease. Second, it is really hard to have a support system of people who have been though what I have. If you think of people who have had cancer or a stroke or a heart attack, there are tons and tons and tons of support groups for those people. There are events everywhere raising money for research and for a cure for those diseases and health issues. And while all of those diseases are extremely serious and scary and fatal, this disease is too and yet I bet more than likely, anyone who is reading this has never even heard of it. A little piece of me wishes I had the strength to organize a community run to raise awareness about this disease and make money to support research. They have no idea what causes this disease (other than in some cases people who take too many steroids can have similar side effects). I had never taken steroids before I was diagnosed. There are hardly any answers for someone who is diagnosed. At the point I am at with this disease, there are no answers. The doctors are learning as they go along. There are differences of opinions among different specialists. No one has the right answer. When I do my own research now, there is not much that I can find anymore about a situation just like mine, not because I am not looking in the wrong places, but because it’s not there…there are not that many people like me any more.

So after learning that the radiation failed, and that I may have a tumor somewhere else in my body, or that it may still be in my brain, my doctors all got together again to try to discuss what the next option would be. The options at this point were a bilateral adrenalectomy, or there were a few medications that some patients tolerated but they didn’t work forever. My endocrinologist referred my to a general surgeon to consult with him about having both adrenal glands removed. This has been what I have been dealing with all summer. Most people think about concerts, and lakes, and rivers and boating and bikinis and fun summer activities during this time… me, well I get to decide if I should try some pretty crazy medications or have a life altering surgery to cure a fatal disease. So after my surgery consult, we decided that I would try a drug that is pretty well known for helping people reduce the amount of cortisol in their body. So I tried this drug knowing that it would not be a long term solution but that it might help for now. I took the drugs for three days and after the first night of taking them I slept for almost 18 hours. Then, the next day the same thing happened. Then the day after that, and the day after that. After the third day of the drugs I stopped taking them but for three weeks I slept between 16 and 18 hours a day. To me, that is not living. Even if I was awake, I was too tired to get out of bed and if I did make it out of bed I would lay on the couch and fall asleep again. I was so exhausted and weak it was horrible. My doctors decided that drug would not be a good option so they started me on another drug that was experimental. This drug was so strong that you only took it twice a week because it stayed in your system for so long. After two doses of this drug I started having issues with my heart and had extremely bad pain in my left arm and it would go numb all the time. Then my hands and feet would fall asleep all the time. When I would wake up at night to roll over or to get up to go to the bathroom( which because of this disease I have to go about 6-8 times a night..real fun) I would immediately start sweating and get a horrible headache. My doctor decided that drug would probably not be a good solution either. After both of these drugs, the last option was to have my adrenal glands removed. There are no other options at this point that the doctors have to help cure this disease.

A  bilateral adrenalectomy is a very rare surgery. First off, your adrenal glands sit on top of your kidneys. A lot of people have one gland or the other gland removed but typically not both. I was told this surgery is performed a few times a year across the entire United States. You can’t live without at least one adrenal gland. This surgery is what they call an end organ surgery because the problem is not actually in my adrenal glands. The problem is the tumor, but because they can’t find the tumor and it is still sending messages to make cortisol, we have to get rid of the source of the cortisol. Removing healthy organs is not normally something doctors like to do, but in my case this is the last option. I always research everything that my doctors tell me. When trying to research this surgery there is not a lot that refers to having both adrenal glands removed. It’s rare. What I have learned from the doctors and from the research is that your adrenal glands make Cortisol. By having the surgery my body will no longer make Cortisol. I had mentioned earlier that you need cortisol to survive. Now I have too much and after surgery I will have none. So I will have to take medication to have cortisol in my body. This medication will keep me alive and I will have to take it multiple times a day for the rest of my life. The tricky part is that I can’t take too much and I can’t take too little (because you get very sick) but that depending on if I have extra stress in my life (physical, mental or emotional) I will have to adjust my dose. There is not a way to measure how much I have on a constant basis so it will all be up to how I am feeling. Now, most everyone takes some kind of medication and some people are on medicine that they will have to take indefinitely. The difference between this medicine and those medications is that if you miss a dose or two you may feel a little sick but typically it is not cause for an emergency. Usually you can miss a few doses and although it is not ideal it won’t kill you. With this medication, if I miss a dose or two, or don’t take enough when I have more stress, I will most likely end up in an emergency room and it can become a life or death situation. It is similar to a diabetic in that way. If a diabetic misses their medication it can turn into a serious situation quickly. The difference with diabetic medication and the medication I will need is for one, most diabetics can test throughout the day to know how much insulin they should be taking and secondly, if something does happen to them, it is a well known disease and most doctors/ hospitals have medicine easily available. I will have no way to test my levels, and the medication I need is not always a medication that is easily available. So to say the least this has not been an easy decision to make. The decision to end a disease that will eventually kill be by having a surgery that will literally keep me dependent on drugs multiple times a day for the rest of my life. Pretty big decision.

By not having adrenal glands I will have a new disease called Addison’s disease. This is a fairly rare disease as well, although some people have it because their adrenal glands stop working, so it is a little less rare than Cushing’s. I am scheduled to have both of my adrenal glands removed on September 10,2013. I will most likely have 8-10 incisions, 4-5 on each side of my ribs to remove each gland. If all goes the way it should, I will be cured from Cushing’s disease that day. The strange part, is that I will still have a brain tumor and will have to continue to watch that. It is possible that it could grow and I will have to have another brain surgery in the future to try to remove it again.

I have left out of lot of little details, especially about my wonderful support system and the numbers of appointments, procedures, tests, complications and details about my day to day well being. I’m sure I’ll have comments on all of that stuff in the future. I did just check this morning and I have had 36 doctors appointments just since Jan. 2013 and that is just clinic visits, not including er visits, getting prescriptions, MRI’s, or lab work. I have a permanent spot on my arm from all the hundreds of labs I have had. If you have any questions I actually love to talk about everything I have been through. I would rather someone ask me a million questions and be well educated on my disease than to assume they know something and have judgments.

Pictures of the markers they used on my head for surgery. The picture of me smiling is of me in the hospital a few days after my third surgery. One of my friends wanted to come see me but she was afraid my head would be wrapped in bandages so I took a picture to show her I was ok.

So on June 29th, 2010 I had my second brain surgery.

This was exploratory surgery to see if my doctor could locate the tumor and remove it. My neurosurgeon explained this to me by saying that he was going to “slice and dice” my pituitary gland. Not the best way to describe to someone how brain surgery will be done. He described to me that he would make a slice, look for tumor, and keep making slices until he found tumor. If he did not find something well defined, he was going to remove the right side of my pituitary gland. Oh joy, having a section of brain removed can never be good. After the surgery I learned that he was able to find tumor and was able to remove what he found. I spent 10 days in ICU recovering from his slicing and dicing. I celebrated the 4th of July in ICU. My mom bought be decorations and silly party hats to wear so I wouldn’t feel like I was missing out on life. I loved it. My dad brought me pizza. We got to celebrate the 4th of July in a way that I never thought I would be celebrating a holiday. I had the best nurse. In Neuro ICU each nurse has only two patients that they focus on during their shift. My nurse had the only two patients in the Neuro ICU that were alert. Me and another guy who had a hole in his skull with a drain coming out. He put us in wheel chairs, hooked up all of our monitors and catheters and wheeled us out into the hallway where there was a window over looking Cal Expo. We watched the fireworks. It was very bittersweet for both me and the other patient. We were both happy to be alive but it was hard to celebrate a holiday away from our families, away from a celebration, away from fun and in a hospital. The nurses were having a pot luck that night and our nurse offered us both some beer..Root beer that is and neither of us had diet restrictions so he told us he could sneak us some food from the potluck too, if we were hungry. He made a huge difference in the way  that holiday went.  You never realize how lonely it can be in the hospital. I was really lucky because I had a lot of visitors, my nurse was constantly checking on me, and I had blood drawn every two hours but the minute no one was there I felt like I was in a prison.

My surgeon had done a lot of damage to the existing gland when he was trying to remove the tumor. I started having a problem with something call diabetes insipidus which is nothing like regular diabetes. It very basically, causes you to have to pee every 15 minutes or so and you can become very dehydrated quickly. This is a problem caused by part of the gland being damaged and so before I was released from the hospital I had to learn how to manage it with medicine. This condition can be incredibly dangerous if it is not controlled properly. About a month after surgery, less than a month from being released from the hospital my employer fired me for not coming back to work. So on top of recovering from brain surgery, having a lot of complications, going to the emergency room more often than a person ever should, I get fired and lose my medical insurance. Wonderful!

After the brain surgeries, my adrenal glands stop working for a few months. During this time I have to take replacement steroids to keep my body functioning properly. Here is a little nerdy insight to how this disease works. In your brain you have a gland called the pituitary gland. This gland produces a bunch of hormones that control almost everything in your body. The pituitary is often called the body’s “Master Gland” because it controls so much. Pituitary.org. describes the pituitary gland this way..

“The pituitary is a small, pea-sized gland located at the base of the brain that functions as “The Master Gland.” From its lofty position above the rest of the body it sends signals to the thyroid gland, adrenal glands, ovaries and testes, directing them to produce
thyroid hormone, cortisol, estrogen, testosterone, and many more. These hormones have dramatic effects on metabolism, blood pressure, sexuality, reproduction, and other vital body functions. In addition, the pituitary gland produces growth hormone for normal development of height and prolactin for milk production.”

Basically, if any of the hormones are out of wack you get very sick. The tumor I have is what is called a functioning tumor because it releases extra hormones that are typically released from your Pituitary gland. My tumor makes too much of a hormone called ACTH. In a normal person, your pituitary responds to stress in your body by releasing ACTH. This stress could be emotional, mental or physical. The ACTH then tells your adrenal glands, little glands above your kidneys, to release a steroid called Cortisol. Once Cortisol is produced it tells your brain to stop making ACTH.  Cortisol is only meant to be in your body for a short period of time and only a small amount to be released. When you have prolonged periods of time with high levels in your body it can lead to death. Cortisol plays a major role in your “fight or flight response”, metabolism, blood pressure regulation, immunity and fertility. You need Cortisol to live, but if it is too high or too low it can be really bad.

Adrenalfatigue.org says “Cortisol is a life sustaining adrenal hormone essential to the maintenance of homeostasis. Called “the stress hormone,” cortisol influences, regulates or modulates many of the changes that occur in the body in response to stress including, but not limited to:

• Blood sugar (glucose) levels
• Fat, protein and carbohydrate metabolism to maintain blood glucose (gluconeogenesis)
• Immune responses
• Anti-inflammatory actions
• Blood pressure
• Heart and blood vessel tone and contraction
• Central nervous system activation

Cortisol levels normally fluctuate throughout the day and night in a circadian rhythm that peaks at about 8 AM and reaches it lowest around 4 AM. While it is vital to health for the adrenals to secret more cortisol in response to stress, it is also very important that bodily functions and cortisol levels return to normal following a stressful event.”

Now, in a person who has a tumor that secretes too much ACTH, like me, there is a constant signal from the tumor telling my body to make cortisol. The cortisol tells my brain to stop making ACTH but because that is not where the ACTH is coming from, the body keeps getting the message to make cortisol and so I have way too much cortisol in my body all the time. Like I have said before, high levels of Cortisol for a long period of time will kill you. I have had high levels since at least 2007 but probably before that. I am basically on a clock that is ticking away and I’m not sure when it will run out of minutes. After each surgery the levels reduce some but they always go back up, which means that for a while I get a little better but I end up getting sick again.

I was able to get a new job about 7 months after being fired, and after I was feeling better. After starting this new job in May 2011 things were good. Then a few months later I started having the feeling again that I was getting sick. I denied it at first and kept questioning the feelings I was having.

The whole time I have had this disease I doubt myself and it has been really hard for me. I feel sick before the doctors have proof with labs that show I really am sick again. It makes me wonder if I am making symptoms up in my head or if I just remember being sick and so I feel sick. I look at me and I look ok. Then something happens and I realize that I really am sick and wonder why I doubt myself. Normal people can shower every day and not have it hurt. Normal people can stand over their sink and do dishes without crying from the pain. Normal people don’t completely forget whole sections of memorable events in their lives. Normal people don’t hurt when someone hugs them. Normal people can get through their life without feeling nauseas every minute of everyday.  I have become extremely sensitive to the fact that I feel like I always have to prove I am sick. I feel like I have to defend myself. When you look at me, and when you spend time with me, I do everything I can in most cases to be normal. Most people would not realize I am sick if I didn’t tell them. This is an invisible disease. I look fine on the outside but on the inside I have a poison running through my veins, slowly killing me. Slowly making me loose memories, slowly damaging my heart, slowly deteriorating my muscles, slowly weakening my bones, slowly causing me to lose some cognitive abilities, slowly changing my personality, slowly changing my self esteem. You get the picture. This disease has changed everything about me.  I’m so insecure about myself now. I have never been the most beautiful person or had the perfect body or perfect life, but I feel like I am so so far away from what I used to be.

So in August 2011, I knew in my heart this disease was back but I so did not want it to be. I waited until December to reach out to my doctors to tell them that I was sick again. Sure enough, they ran tests and did an MRI and knew that I needed to have surgery again. I was scheduled for my 3rd brain surgery on February 15, 2012. I had a lot of complications during this surgery. I stopped breathing 8 times and in the middle of the surgery I had a spinal fluid leak that the surgeon had to stop immediately. Right after surgery my surgeon told me that the surgery was unsuccessful and that even though he removed 1/3 of the entire gland he didn’t think he removed all of the tumor. I spent another 10 days in ICU. Again, I was lucky to have a lot of visitors but I don’t think anything is more lonely than being in a hospital room, weak and completely reliant on other people to help you. I had to have a nurse come into my room and watch me go to the bathroom incase I was too weak to be able to stand up on my own again or in case my heart rate got too high. You lose every bit of modesty when you are in a situation like that.  I was released the day before my birthday which I was very grateful for. I did not want to spend another holiday in the hospital.Because at this point the surgeon could not see the tumor,( he said a few cells could be causing the disease to be a full blown problem), his next option for me was going to be radiation.

To have radiation was a very big decision to make. At the time I had the choice to do radiation or to have my entire pituitary gland completely removed surgically. My doctor and I talked a lot about it and he consulted doctors all across the country on what to do. Most people who have Cushing’s have one surgery to remove their tumor and they go on to lead great lives. I had just completed number three and things were looking pretty bleak. After lots of discussions, my doctor suggested to me to do the radiation because this type of radiation was slow acting and his hope would be that as the pituitary died and as I  lost function of different parts of what it controls, other parts of my brain would take over the control of those functions. He said that it would take about a year to see results but that it could take up to 5 years for the whole gland and tumor to die. Realistically, I would most likely lose function of my entire gland and be on lots of hormone replacements for the rest of my life but it would happen slowly and more importantly, the tumor would be dying also, so that I wouldn’t die from the disease.

At the end of March 2012, while still recovering from my surgery, I went to Redwood City and met with the top Radiation Oncologist in the area. He was extremely hesitant to do the radiation. After all they were going to be radiating and killing a whole section of my brain. That is a pretty big deal. It’s not like you have a section of brain that doesn’t have a purpose. The pituitary controls so much it is incredible. He knew I was young and the fact that I’m female and had not had children he was not sure it should be done. I went back home and spoke with my doctors again and we all decided that although there would be major consequences that this would be the best way to kill the tumor. I most likely would not be able to have children on my own.  I had radiation on my mom’s birthday. What a way to celebrate. It took three days. The type of radiation I had is not like the kind of radiation you hear about with people who have cancer and have long treatments of radiation over their entire body. This radiation is much more focused and a lot stronger. It was aimed directly at my pituitary gland.  I knew that it was going to be a long recovery, and I would not feel better right away.

I was right..it was a long recovery and I’m still not better. More to come…

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 🙂