June 2010- March 2012

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…