To My Mom

Mother's love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul



Over the course of the last four years I have been able to develop a close relationship with my mom. My mom and I weren't the closest when I was growing up (something about me being stubborn... I dunno :) )but I honestly am THANKFUL (yes I said it) that I got this disease. It has brought us together, closer than I ever could have imagined. She has been there for me from the start... no wait... even before I was diagnosed... I probably wouldn't have ever got diagnosed if it wasn't for her pushing the doctors to do more tests. She even went to my doctor while I was at work with my grad photo to prove to him that I wasn't "just getting fat!" She has sat through more doctors appointments... surgeries... radiation treatments etc etc etc... than anyone should EVER have to, and she did it without me even having to ask her to (She even did it when I told her not too!). She has been there for me through all the emotional break downs, not to sit there and say that she knows what I was going through, but to sit and listen to what I had to say... and love me unconditionally. Everytime I hear this song I think of my mom:

I'll Stand by You:

Oh, why you look so sad?

Tears are in your eyes

Come on and come to me now

Dont be ashamed to cry

Let me see you through

Cause Ive seen the dark side too

When the night falls on you

You dont know what to do

Nothing you confess

Could make me love you less

Ill stand by you Ill stand by you

Wont let nobody hurt you

Ill stand by you

So if youre mad, get mad

Dont hold it all inside

Come on and talk to me now

Hey, what you got to hide?

I get angry too

Well Im a lot like you

When youre standing at the crossroads

And dont know which path to choose

Let me come along

cause even if youre wrong

Ill stand by you Ill stand by you

Wont let nobody hurt you

Ill stand by you

Take me in, into your darkest hour

And Ill never desert you
Ill stand by you

And when...When the night falls on you, baby

Youre feeling all alone

You wont be on your own

Ill stand by you Ill stand by you

Wont let nobody hurt you

Ill stand by you

Take me in, into your darkest hour

And Ill never desert you

Ill stand by you Ill stand by you

Wont let nobody hurt you Ill stand by you

I can't even describe to everyone how much of a strength she has been for me, so that being said:

Mom: I want you to know that you mean more to me than you will EVER know. From the beginning you have been there for me. You made me realize that even though I had gained alot of weight and I didn't look the same as I did before I was still me. When I thought I was losing "friends" because of the changes in my physical appearance you made me realize that the people who were really my true friends would love me no matter what I looked like. You understood that the hardest part of me being sick was the weight gain, you encouraged me to be healthy, and reminded me every single day that I was beautiful, both inside and out. I want you to know mom that I am truly thankful that you pushed me to go to the doctors, and then pushed the doctors to find out what was wrong. Without you I probably would not be here today. I have never doubted that you would be there for me, even when I thought I was all alone. I know I can count on you for anything. I can't even imagine how how this whole journey has been for you, seeing me at my worst (like right after my operations). I know how caring you are, and for you to watch someone you love go through what I have drug you through must have been extremely hard. I want you to know that if it hadn't been for you and your strength I would not have been able to have gone through all 3 surgeries and the radiation. I would have given up a long time ago. I have fed off your strength and your belief that I was going to get better. Having you there when I would break down and just cry made me feel comfort; more than I could ever explain. I can only hope that one day I can be like you; strong, caring, loving, giving, and someone to look up to. Mom you will never know exactly how much you have helped me. You have put four years of your life on hold for me, I want you to know that I believe you when you say "It's done." You have made me feel like a "normal" human being, and you have constantly reminded me that it doesn't matter what I look like on the outside, I am still Stacy, and always will be. If you are proud of me mom, you should be proud of yourself. You are the reason I am who I am. I LOVE YOU!!!! Thank you for being there me always....

Love Stacy

~*LiFe AiN't AlWaYs BeAuTiFuL*~

I am not really sure of the point of this post but lately I have been thinking alot about how I have felt over the course of the last four years (both physically and emotionally). I have had such a mix of emotions; one minute I am happy-go-lucky then the next I am flying off the handle mad... then not 2 minutes later I am crying... I couldn't seem to control my temper which just made things worse because I am not a mean person normally. I was horrible to the people I love the most (my mom, dad, sisters and Justin). I can't explain it and I know most of you can't understand but I HONESTLY couldn't help it! Recently I have come across a song that I feel describes how I felt when I would get angry at people (ESPECIALLY MY MOM!):

I don't know if I can yell any louder

How many time have I kicked you outta here?Or said something insulting?

I can be so mean when I wanna be

I am capable of really anything

I can cut you into pieces

When my heart is....broken

Please don't leave me Please don't leave me

I always say how I don't need you

But it's always gonna come right back to this

Please, don't leave me

How did I become so obnoxious?

What is it with you that makes me act like this?

I've never been this nasty

Looking back at the way I treated people who were just trying to help me (My mom & dad, sisters, & Justin mostly ) the first part of the song describes me perfectly; one minute I was yelling and screaming at them to leave me alone, I said horribly mean things, and cut them down. I have kicked my poor mom (God Bless her!) out of hospital rooms, out of doctors offices, and even my house. The part of this song when it says "Please don't leave me" was really how I was feeling even though I was telling you to leave me alone. I hope you understand that I didn't know how to deal with everything that I was going through, it was REALLY hard... Thank you for ALWAYS being there for me... you know who you are!

*** I want to say how sorry I am to everyone who I said hurtful or mean things too, I know now you were only there because you care for me so much and I am SOOOOOO sorry!***

The next part of the song goes to say:

How did I become so obnoxious?
What is it with you that makes me act like this?
I've never been this nasty'

That is EXACTLY how Cushing's made me feel. I could be such a horrible, mean person.... I can't understand how something like Cushing's Disease can change a person's behaviour so much. It was so difficult for me to accept the fact that I couldn't control my anger... luckily for me I had some people that could deal with me when I would get into my fits, and unfortunately I had people who didn't know how to deal with me. It ruined alot of relationships in my life....

Not the way I thought the appointment would go....

So after about 18 months after my radiation treatment, my mom and I were once again on our way to Edmonton for yet another appointment. This time I would be down there for Three days. I was getting my MRI done for the doctors at the University Hospital done on Monday night, my appointment with Dr Chik (my endocrine specialist) and Dr Broad (my neurosurgeon) was on Tuesday, and then my appointments at the Cross Cancer Center were on Wednesday. In the many trips back and forth to Edmonton my Mom and I get lots of chances to talk. We have talked about absolutely everything. We have developed a very close bond over the past four years. We have been through alot together and I am thankful that I have had the chance to spend so much time with her, she has become my best friend and I know that I can tell her ANYTHING! (I love you Mom!)

Anyways we drove to Edmonton Monday morning to make it to my appointment that night, and of course as my luck would have it they were running behind schedule. We had to wait a while only for me to go in and have a 10 minute MRI scan. After my appointment we went back to the hotel to chill out for the night. We woke up fairly early the next morning to do some running around before my appointment. When we got to the hospital we made our way up to Dr Broads office (we have been there so many times I am sure we could do it blindfolded!). We didn't have to wait too long and I was called into one of the rooms. Soon after Dr Chik and Dr Broad both came in, they pulled up my MRI on the little computer screen. I always look at the screen but I can never see what they are looking at unless they point it out... I always watch Dr Broads face to see if it is good or bad news. The last few appointments there hasn't been a change in his expression but this time I noticed a change.... my heart was racing. Immediately he looked at me and said "We are going to remove your adrenal glands." A million things were running through my head at that moment... but all I could spit out was "OK."

This is where Dr Chik stepped in and said that the reason they were going to do this is because it has been 18 months since my last radiation treatment, I am on high doses of ketaconazole and there is still no change in my levels. Also according to my last blood test my liver enzymes had doubled in less than a month (I take it that is not a good thing!). They went on to say that they both agreed that removing my adrenal glands would be best for me.

I just sat there kinda stupid. My mom was asking questions but I don't recall what they were saying. All I could think of was this was something that I had been asking them to do but now that they have said this is what they were going to do I wasn't sure. I mean I wasn't actually sure I could handle another surgery.... both physically and mentally. I had done some research on adrenal removal surgeries so I had an idea of what it entailed but.... I was scared.... overwhelmed...

We were asking them questions but they were unable to answer alot of them because they wanted to let the surgeon answer them for me. I wanted to know if they would do the surgery laproscopically, or if they would have to cut me WIDE open. I wanted to know all the possible complications of the surgery, and what I could expect afterwards. I had so many questions...

Dr Chik told me that she would arrange to get me set up with the surgeon who would be preforming my surgery. She had 2 in mind, one had more experience with Cushing's patients than the other but she assured me that they were both great. Dr Chik told me to continue taking my medication as I had before and that she would be in touch.... and with that we were sent on our way.

Needless to say the rest of the day was pretty much wasted. I didn't want to do anything or go anywhere. I believe my mom even took me to The Olive Garden for supper (she knows it is my favourite).

The next day we went to my appointment at the Cross Cancer Center. I got my MRIs done, I even had the one where they inject dye into an IV so they can see the tumor better. It feel sort of cool and gross all at the same time. I wasn't really into talking with the nurse or the doctors, I had too much on my mind from the information I had received the day before.

Me and mom were once again on our way home. I had a lot of time to think that day. I know my mom knew that I was scared and worried. She kept asking me how I felt and what I was thinking. I try not to let her know when I am scared because then she worries even more about me so I kept saying that I was fine with it. Really I wasn't... how much more would I have to edure?

My Dad and sisters were also worried when we told them what I had to get done. My whole family was really.... I have a great family and they always know what to say to me to help make me feel better. My Dad (Jim) doesn't treat me differently because I am sick, I am still the same old Stacy to him, but if I need someone to talk to or a shoulder to cry on hes there! My sisters are great for taking me out and doing things to get my mind off things, and my mom well shes just great... a little overbearing sometimes (always reminding me to take my pills, get rest... you know the "mom" haha). It is nice to have that balance... I was glad to get home and just absorb everything. It gave me a chance to do some more research and learn a bit more about possible complications and what the expected results of having my adrenal glands were.

I continued to try and carry on with day to day activity; work, riding my horse etc. Now I would just have to sit and wait until the surgeons office called.

Doing some research......

Over the last few years I have done alot of research on my own. I found that I wasn't getting the information given to me from the doctors and I was terrible for remembering to ask the doctors things while I was at appointments. I have become very good at researching for myself. I do have to admit that when I was first diagnosed there was little or no information regarding my Cushing's Disease that didn't pertain to dogs and horses.... and last time I checked I wasn't either of those! Over the last 3 years I have been able to find more and more information but most of the information I have found hasn't been useful for me. I have already had 2 surgeries and radiation and all the information I could obtain on the internet only had surgery and radiation as treatments. I have already had that done and now I am left wondering what next? It is scary to think that there might not be any more treatment options for me....

Luckily one day while I was watching the TLC network I came across a show called "Mystery Diagnosis", not sure if you have seen it but the show features a person who experiences symptoms but doctors can't figure out what is wrong with them. The show explains the symptoms and all the testing and medical issues that these people have to go through before they are diagnosed. The lady that was featured on this particular episode had the same symptoms as I had, her name is Sharmyn McGraw.
I remember sitting at Justin's parents house watching TV with the family. I started feeling kind of embarrassed because Sharmyn was explaining her symptoms in detail and I hadn't quite told Justin and his family all my symptoms because some of them were a little bit personal. But I guess it was good that they knew and I wasn't the one who had to explain them! But as I sat there watching this program I kept saying to Justin "I bet she has Cushing's Disease" (they don't tell you the disease until the end of the show", and Justin just laughed and said "I doubt it." But the longer we watched the show the more convinced I became that she also had Cushing's Disease. It turns out that I was right (not that that surprises me... just kidding! ). At the end of the show they talked about how Sharmyn had started support groups and things like that for people suffering from this disease because she went throught hell before she was diagnosed and she wanted to help others.

I ended up Googling her name and obtained an email address to contact her. I am not going to lie, I kind of felt like a stalker! But I emailed her not really expecting to get a reply from her. I told her about how I was young (19 when I was diagnosed), I told her about all the weight I had gained, all the treatments I had already received, and how I felt both emotionally and physically. A couple days later I was amazed when I checked my email and I had received an email from her. She was very supportive and I knew she understood how I felt because she had went through a similar situation. It was the first time I felt as if someone truly understood how I felt. She provided me with some useful links with helpful information. She also provided me with the name of an Endocrine Specialist in Toronto.

I began emailing him and he told me what he would be doing with me and my special situation. He told me that he would have already removed my adrenal glands because he felt that that would be the best solution for my situation. By removing my adrenal glands my body would no longer be able to produce cortisol and that would help "fix" my Cushing's Disease. He cautioned me that if my doctors were to remove my adrenal glands I would have to be put on a replacement medication because your body needs cortisol to survive. This was an option that Dr Chik had mentioned before but was reluctant to do.

Hearing another specialists point of view made me feel optimistic about being cured. At least there was another option available to me! So my next check up with Dr Chik I mentioned that I had talked to another specialist and he said that he felt that they should remove my adrenal glands.... Dr Chik just laughed and said "Oh that is because he is not patient!".... I was frustrated because I am not patient either and I was mad because this other doctor felt that this would be a good option for me and I didn't understand why my doctor wouldn't want to do it.

I left that appointment frustrated and sad... they decided to keep going with the same dose of ketaconozole.... there was still little to no change.... WHEN IS IT GONNA END!?!?!?!?!?!?

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!