Life goes on.... sort of.....

I finished my treatments in June of 2007. For the next 18 months I would have follow up appointments at the Cross Cancer Center. I started having to go every 3 months then every 6 months. This is because I had signed up for the "study" radiation and they have to document EVERYTHING. Every time I go there they get me to fill out a survey asking me questions such as "In the last week have you had trouble walking?", and I have to answer the same questions and draw a picture for them etc etc. It seems a bit ridiculous to me but I guess it is important in their research.



In a way I hate going to the Cross because everyone is so sick there... it is really sad. I knew 2 people that were having treatments there while I was there. Unfortunately both of them have passed away, one of them was the same age as me! It really made me realize that even though I may have some unfortunate circumstances I could be a whole lot worse.



Every time I go to the Cross Cancer Center I have to have MRI's done to see if the radiation is working. I would to have one MRI that last 32 minutes then a couple shorter ones. I am supposed to be strapped in my mask for these MRI's but Dave (the MRI guy) doesn't strap me in... he just made me promise not to move! If it was working then the MRI's would show my tumor shrinking. Every time I would have an MRI done I would pray that there would be some change... but every time I hear the same thing from the doctor "There is no significant change." Which actually makes me laugh because my doctor has a really thick French accent and he is VERY hard to understand. When he said that to me the first time I saw him I had to ask him to repeat himself like 4 times before I actually understood what he was saying. Every time I hear him say that sentence my heart sort of sinks. I feel as if I have gone through everything that I did with the radiation treatments for nothing. I started to feel as if I will never be cured... nothing is ever going to change and I am not going to lie... I have cried lots. It is just so frustrating hearing the doctors tell you that nothing has improved. Don't get me wrong, I am very happy to hear that it isn't growing again, but it would be nice to see some positive change!

Along with going to the Cross Cancer Center I have had to go to the U of A Hospital several times for check ups. Over the last 18 months or so they have played with my dosage of Ketaconazole trying to find what I like to call "the sweet spot". For me the "sweet spot" would be the right level of medication that would bring my cortisol and ACTH levels to a "normal" range. So far this hasn't happened. The doctors had me on 200 mg of Ketaconazole 4 times a day (which is a fairly high dosage) and my levels were still above the "normal" range.


About 2 months after my radiation treatments I started working part time in an office. It was great to be able to start moving on with my life and be somewhat "normal". The place that I work at has been great about allowing me to have the time off for my doctors appointments and letting me leave to go have my blood work done. I had to get my blood checked at least once a month. They would test my cortisol levels and ACTH levels as well as regularly checking me for diabetes (Cushing's Disease causes diabetes's in alot of patients). I would also have to do a 24 hour urine test, which meant for 24 hours I had to pee into a jug... trust me NOT FUN!!!! It was kind of a burden to have to pack around this jug, not to mention that it is not discreet at all... I mean come on does it have to be bright ORANGE?!?!



I know to some of you it doesn't seem that bad... but because of my disease I have had to go through alot that most people don't. On top of the burden of having to get my blood work done, the urine tests done etc I have had to be extra careful. I bruise super easy so it always looks like I get beat. I have to try and take my medication at the same time every day and if I missed a dose I became extremely moody, got outrageously upset over the stupidest things, I would feel tired alot of the time. If I didn't take my medication I would not be able to sleep properly so sometimes I had to take sleeping pills just so I could get 5 hours of sleep at night. This disease has had a negative effect on alot of my relationships (not just with Justin but friends and family as well). This disease has really effected my life.... both for the good and the bad. I have grown as a person and I think that this disease has made me more compassionate towards people. I have had to make alot of adjustments in my life but I still believe that "God will never throw something at you that you cannot handle". It has been a rough road and I am just hoping that one day I can help people understand this disease and how it really has a huge impact on a persons life.

The rest of the radiation treatments....

So my Dad ever so faithfully woke me up every morning to drive me into the city.... sat in the waiting room for me to have my treatment just so we could drive an hour and a half back to the ranch. Every day was pretty much the same..





My Dad made a comment about how he thought it was funny that after EVERY treatment I would start yawning as soon as we got to the automatic doors on the way out of the building... I hadn't even noticed that!





There was one day during that week that the tomo machine was "broken" and we had the choice to wait until it was fixed or to just add another day onto my treatments... after discussing it with my Dad we decided to just wait... I mean what else did we have to do?.... we only ended up waiting about 2 hours anyways so it wasn't that bad.....





Staying at the ranch sucked... since my Grandma passed away it was not the same. Al started being rude to me because I didn't care for the fact that he had a girlfriend already. It really hurt that after only about 3 months he already had moved on... he was with my Grandma for 23 years and he was able to just brush her aside... it really hurt and I didn't hide the fact that I thought that was awful. I was not rude to him but I didn't hide my feelings either.... he did not like that. So I looked forward to the weekends when I could go home and be away from him. He also made me feel like I was just lazy because all I did was sleep.... he didn't understand that I couldn't help it, that I needed to sleep as much as I did. My Dad was great though... he told me he liked it that I had to nap a lot because then he got to too! I love him so much and it was so great to have him down there with me.... he always seems to have a way of making me feel "normal". It was nice to spend a whole week with him... and the best part was that when we went home that weekend it was Logan's 2nd birthday so we had a birthday party for him at my parents. It was alot of fun to be around friends and family, and especially Logan. His laughter made everything seem okay and it helped me forget about being tired all the time.

The following week my Dad (Jack) and Shannon came to Edmonton with me. Logans Dad (Darren) had a birthday party for Logan that day at his house, and we didn't end up leaving the Ranch until about 6pm. We drove to Little Smoky which is where my Auntie Karen lives and we stopped and visited with her for a bit. We actually only made it to Whitecourt that night so we had to wake up early to make it to the city in time for my treatment. It was sort of weird to have my Dad there because he had never been there for any of my medical stuff and they didn't understand any of it. After my treatment we drove to the hotel that we were going to be staying at and Shannon wanted to go shopping... I was too tired so I fell asleep and when I woke up they were gone... must have gotten bored. They both didn't understand how tired I felt and I am sure it was hard for them to just sit around. The rest of the week went fairly well, I was tired but tried to keep up. We went shopping a bit and before I knew it the week was over and we got to come home again.



Nothing really extraordinary happened throughout my treatments. There were a couple days that the machine was broken, a few days where I felt a little nauseous and I continued to become more and more tired. My hair thinned a little but not alot, and my skin became dry. I made sure to continue using the baby products (such as the shampoo and lotions), I had fuzzy hair and smelt like a baby and I couldn't wear make up which was a little scary... but it wasn't that bad!!!

My mom came with me for the rest of my treatments. The treatments made me so tired that all I really did was sleep... it must have been so boring for her! There were a few days that the machine wasn't working so we ended up driving to Calgary because my mom had one of her horses in training with Clay Webster and he was living just outside of Calgary. I think we went there 2 or 3 times... I slept pretty much the whole way there, but it was nice to be around all the horses and to see Nikki (my moms mare). I was able to watch Clay ride some of the horses that he was training and I must say that is when I really got the reining bug. I decided that that was what I wanted to do as well... Clay and his wife Jenn are amazing people. Clay has helped me learn so much in the wonderful world of reining, and with my mare Luci.

The last week of my treatments I only had to go for 2 days so my little sister Jaimie came down with me. I think it really opened her eyes as to what I had to go through on a daily basis... she had never been to any of my appointments with me, just to my second surgery. She was a trooper though, not really fond of having to get up at 6 in the morning to drive to the city but luckily we only had to do it for 2 days! On the last day of my treatment I also had to go to the U of A hospital to meet with my endocrine doctor and the neuro surgeon to have a check up. My appointment was at 10am, but as you probably can imagine they were "running a bit behind schedule". I remember sitting there with Jaimie and she was tired and hungry and she looked at me and said "I hate your life". I laughed because I was used to this, the doctors appointments always seem to be behind schedule but you don't dare show up late just in case they actually are running on schedule, you wouldn't want to miss your appointment! My appointment was sort of a waste of time, the doctors didn't have anything new to tell me. They were going to keep me on the same dose of ketaconazole and I would have to come back in 3 months for another follow up appointment. So Jaimie and I grabbed some food and started our trip back home... the whole 7 hours of it! I don't think I ever did thank her for coming with me but just in case she reads this THANK YOU JAIMIE!!! I love you!

***This post is just a glimpse at my radiation treatments... it was so long ago that I know I probably have forgotten some things but my memory isn't so great. All the days seem to run into one another... so sorry!***

LEAVING TOMORROW!!

Okay I now this is going to be short but I have seemed to wait until the last possible minute (as usual) to pack and get ready to go.... I PORMISE I will catch up with my blog when I get back. As most of you know I am going to be having my adrenal glands removed and I have to leave tomorrow (Tuesday May 5th) to drive to Edmonton. I have to check into the hospital on Wednesday (May 6th) and my surgery will be on May 7th. I am not sure how long I will be gone but there are just a couple things I wanted to say before I go....

First I want to thank everyone who came and celebrated with me on Saturday night... I HAD SOOOOOOOOOOOOOOOOOOOOOOOOOOOO much fun. I also really appreciated all the comments and encouraging words that everyone said to me.... and sorry for crying like a baby!! It just made me realize how wonderful my friends and family are and that I am truly blessed! For those of you who couldn't make it... no worries!!

It is late and I have to be at work at 7 am(we are not leaving until 10am) so I am going to keep this short... I love you all and I can't wait to come back and keep riding, go camping... play ball... just be NORMAL!!!!!!!!! I LOVE YOU ALL and will talk to you all very soon!