Thursday, July 21, 2011

Laying it All Out on the Table: Why I hate the 4th of July…Part 2

Dear Friends, 

Thanks you for your many suggestions  on how to write my story. I am going to take Roberta's idea and write this in as many parts as needed. Also here is a few links for more information
Link 1  
Link 2 
Link 3

So I left off with finding out that I had a pituitary tumor, a Craniopharyngioma, and that surgery was the only option for removal. Of course when you find out that your body has betrayed you, your life changes. As I found out many things went though my head. It was like watching a movie in slow motion. I was worried about what would happen to me, it I would live or die. What would happen to my parents. Did I have cancer (thankfully my tumor wasn't cancerous but many are) ? Would I loose my hair? What kind of life would I lead if I didn't die… Honestly I was mostly concerned about my hair in the beginning. I wanted to keep it, not to have chemo or shave it. The more I thought about the surgery and my tumor it all kind of made sense….much  later that night there was an aha moment. This is why I was different, this is why I am fat, this is why I drink and got to the bathroom all the time. This is what was wrong with me and this is what is going to change my life. Everything started to fall into place but it didn't make me feel better. I only felt like more of an outsider, more of a freak… more out of place than ever before.

A little side note: A few months before we found out about my tumor my dad got fed up with me waking up every few hours and drinking constantly. As I said I drank icy cold water many times each night and then peed. This was a crazy.  And apparently I had woken my dad up doing this crazy cycle. So dad told me that there was no reason to drink that much and that I wasn't to go to the kitchen that night. If I wanted a drink I could use the bathroom sink.  That night was awful for me. Icy cold water was the only way I could drink water and no matter how long that bathroom sink ran it was never cold enough for me.  But I made it though that night (I finally snuck downstairs and filled many water bottles with ice water and wrapped them in a towel and  snuck back to my bedroom. I don't recall if my dad ever found out about my trip to the kitchen that night but it bothered me for a really long time. I knew not everyone drank as much as me but I was always thirsty. Even when I was drinking… 

A little later that night but still way too soon, a surgeon came in to talk to me about my surgery. All I remember about him was  his totally overgrown beard. He told me about 2 options for my surgery. Option 1: take out the tumor though my nose if it was small enough or Option 2: slice across my skull and pull down my face and go from above. I wasn't keen on either option. I barely wanted to shake hands with this guy let alone let him out his hands in my brain.  I am really lucky that my parents wanted me to find a surgeon that I felt comfortable with, so I transferred from Riley Children's hospital to Methodist Hospital for my surgery. Due to the size of my tumor option 2 was the only way to go.  

The next 2  weeks were filled with hormone tests, blood tests, doctors visits We all learned about the pituitary gland, what it does and where it is located and how exactly they get to it. 
So I have been to tons and tons of doctors and for some really stupid reason they talk about your body like fruit and vegetables for the most part. I know that your pituitary is a few cells that float back into your skull during your 3rd month in utero and in my case a few extra cells followed along. The pituitary is normally the size of a green pea and at the age of 15 my tumor was wrapped around the pituitary gland and it was the size of a large egg or tomato. 

As much as I begged and pleaded with my parents they wouldn't let me out of the surgery or even let me have it postponed. I had to start school in August and they wanted me to have plenty of time to recover.  So my 2 weeks of testing ended and it was time for surgery. My surgery was to remove my tumor and I think it took between 4 and 5 hours. If you want more details on the surgery please check this link out here.

I woke up many hours later in ICU, blind since my eyes had swollen shut. I was blind for at least 3 days, maybe longer. I wasn't allowed to drink anything the night before my surgery so I was completely dehydrated and thirstier than ever. The nurses in ICU rubbed my teeth and tongue with a moist lemon flavored stick and I tried to suck out all the moisture. One of the nurses offered me some ice and just a tiny amount of water which was gone much too fast. So I was given just a bit more. I kept drinking as much as they would give me until my stomach got a little too upset. You really can't eat or even drink after surgery.  The nurses changed my bed and then knocked me out. 

When I came to again Mom and Dad were with me holding my hands and talking to me. I found out that the surgery went ok and they actually removed most or all of the pituitary along with the tumor. And I was on all but one of the hormone replacement medications.

After the ICU I was taken to the children's ward and I thankfully got a private room which was next to the kids playroom. Unfortunately the stereo was on my wall and it was always too loud for me. I heard the bass constantly. But I had my parents with me and tons of visitors, cards, stuffed animals and flowers in my room to make it cheery. 

I was finally allowed to eat real food and so I asked my mom for an Arni's Junior salad and Boston Market  . So after my salad my parents when back to their hotel and I went to sleep.  I awoke later with the worst migraine I had ever had. The doctors and nurses rushed me to the MRI to see what had happened to me… it was my dinner. So I was put on a no/low salt diet for the remainder of my recovery.  Apparently after a  brain  surgery you brain swells. And my salty dinner had made my poor brain swell even further.  

I finally was released from the hospital and sent home. Look for the next installment on Thursday. 
Cheers,   Kate


  1. I can't imagine how terrifying that must have been. I am sorry you had to go through it.

  2. WOW!! This/that was/is some serious stuff. And you still must live with it daily. It must be hard, but you seem to deal with it with grace and courage.

    More Thyme

  3. Ahhhh, there you are! I'm "following" your other web address through WP and thought you'd taken a long break... now I can see that you took a short break, and it's very understandable. How scary for you and how amazing that you are so open about it. Take care! Courtney

  4. My first meal was a bagel with cream cheese and a NY egg cream (how NY, right?). But we did it, Kate! (I think my last comment didn't post.) But we did it! We are here to tell the tale! It was so traumatic for ourselves and our families, and a part of us never really gets over it--I'm reminded of it when I refill my meds each week. But we are survivors in the true sense of the word. Go pit people! ;o) xoxoxo


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