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.
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