Wednesday, April 1, 2009

After Surgery

Finally we were on our way HOME! I could not wait to get home and see my family again. I still looked pretty rough; I had bruises up both arms from the IV's, my skin was dry and red from having the patch on my face for so long, my face was still a little swollen and I had strings constantly hanging out of my nose (from the stitches inside my nose). I had to take 400mg of ketaconazol per day, and monitor my blood pressure too. Ketaconazole is a antifungal agent blocks the formation of steroid hormones such as cortisol. Ketaconazole is one of the most popular medications to treat Cushing's Disease. But I didn't care... just super happy to be going home.... and to be cured!
My mom and I had stopped at my sisters on our way home and I decided to stay at her house. Partly to see my sister and my nephew but partly because I had been talking to a guy that lived out by her and while I was in the hospital he told me that he had been telling his friends that I was his girlfriend. We were supposed to be going on a date.
When he came to pick me up for our "date" he had brought his cousin.... nice hey? Anyways we ended up going to the movie but the only problem was that because of the surgery and stuff I often got bloody noses without warning. I missed probably about half the movie because I just kept getting bloody noses. I thought "Great he probably thinks I am a freak!". But I found out that this guy liked me for me and he never treated me differently.
Every 3 months I had to drive to Edmonton for check ups. I was still getting migraines all the time so I had to take T3's quite often to dull the pain. The nose bleeds eventually died down and I wasn't getting them as often. I had to make sure that I didn't have any stress so I wasn't allowed to go back to school, and I also wasn't allowed to work. My life was sort of at a stand still.
My mom ended up giving me a horse named Tia. I spent alot of time working her. I wasn't able to ride for the first few months because my balance was pretty much shot and I had to work on getting it back before I could even think about riding. After a while I was able to ride but I could tell that my balance was sure not what it used to be. Having Tia was very theraputic for me. I bonded with her and I just felt like she truly understood me when know one else could. Don't get me wrong, my family was great about trying to understand what I had been through but no one had experienced it and it is truly frustrating trying to explain how you are feeling to everyone. I felt as if Tia was the only one who wasn't constantly asking me "Are you okay?" "How are you feeling?" etc etc. She didn't treat me differently and that's what I needed. I know it is hard for most of you to understand what I am talking about.... but she helped to me feel normal when everyone else treated me differently because I was sick.
I had to get my blood checked every couple of weeks so they could monitor my ACTH levels and cortisol. I also had to do 24 hour urine tests every 2 weeks so they could track my cortisol in a 24 hour period.
I was starting to become very optimistic that I had been cured. I was slowly starting to get some of my energy back and was able to sleep through the night. I didn't seem to be bruising as easily and was starting to heal much faster. In November of 2005 I was FINALLY able to go back to work. It felt good to start working again and not feeling useless. I still had to make sure that I didn't have a lot of stress so I started working part time as a parts delivery person. Things were going great.
Unfortunately my Grandma Irma passed away from cancer shortly after. I felt as if I had lost a HUGE part of my life. My Grandma was one of the only people who didn't treat me differently because I was sick... she understood having to go through all the hospital visits and stuff because she had been sick for quite a while too. She was one of the only people that I felt comfortable talking to about how I was feeling, and when I was scared or upset because of my disease. I felt like I would have no one who understood as well as she had. I miss her VERY much and I remember all the special things she did for me, and all the amazing things she taught me. Because of all the stress from my Grandma passing away I started feeling crappy again. I started not being able to sleep during the night again, the bruising increased and my mood swings started to come back. This caused trouble in my relationship not only with my boyfriend but with my friends and family too. I always was tired and I couldn't explain why I always felt terrible.
I had to go back for another checkup in Edmonton in the fall. Hoping that my levels had straightened out I was feeling pretty optimistic... who knows maybe they would be able to lower my dose of ketaconozole.
When I got to Edmonton I had to have more MRI's done (pretty standard when doctors are looking to see if your tumor has grown/shrunk) and I had to have the IV dye (which makes it easier to see a tumor, the tumor attracts the dye making it easier to see). It felt really neat actually when they inserted the dye. I could actually feel the dye going up my arm into my neck and then into my head. It was a cold feeling and it gave me shivers!
The next day I had my appointment in the Pituitary clinic with my Neurosurgeon and Endocrine specialist. My mom and Dad were with me. I was nervous (I always get nervous in doctors office's). When they called my name and took me into the room my Mom, Dad and I sat down an waited for the doctor. I was really hoping that the doctors would have some good news. When the doctors came in they told us that they had looked at my MRI's and they were concerned. My tumor was growing, and it was growing aggressively. I would have to have another surgery as soon as possible. My heart sunk.............

2 comments:

  1. Stacy I'm sorry it took me so long to get to this blog-I have been a terrible friend...been pretty much avoiding all social things since Granny passed away away in Nov. Really want to let you know that the poise and grace you posses is truly inspiring, you are such an ass kicker...and yet a beautiful compassionate person after all you have been dealt you will really help and educate others. I need your frigging phone number so we can do the ichiban date!

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  2. Stacy, love your story and look forward to your updates. You're such a brave young lady and we love you dearly. Keep up the good work. We're pulling for you. Love Jim and Colleen

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