"Hello I am Dr McMullen."

So life went on fairly normal for a little while... I thought it would be MONTHS before I even got to go see the surgeon, so I thought it would be a REALLY long time before my surgery. But withing about 2 weeks I received a call from Dr McMullen's office (he is an Endocrine surgeon) to set up an appointment to see him. My appointment was to be on March 6th. So again mom and I took the day off work to drive the loooonnnnngggg drive to Edmonton.


So the next morning we woke up fairly early so that we could make it to my appointment. I was so excited because my appointment was fairly early so we were going to be able to make it home at a decent time! We got to the hospital and decided that instead of trying to find a parking spot where my vehicle would fit that we would just valet it. It actually worked out really well because they park it for you and it really isn't a whole lot more expensive and way less stressful! Mom and I made our way to the glass elevator and went up to the second floor. I had never been to Dr McMullen's clinic before but it was on the same floor as Dr Broad's so I had an idea of where we needed to go.... turns out Dr McMullen's clinic is pretty much right beside Dr Broad's!



We didn't have to wait that long before we were able to go into the room and wait for Dr McMullen to come in which was awesome because I HATE WAITING!! haha... Dr McMullen introduced himself and the first thing out of his mouth was "I won't do this surgery unless you are 100% on board, if you have any hesitation I am not doing it." I was sort of baffled... I had never had a doctor tell me that, they always just tell me that this is what I should do. So I looked at Dr McMullen and I asked him if he thought this was a good idea and if he believed that having a bilateral adrenalectomy was the best possible choice for me. Without any hesitation at all he looked at me and simply said "Absolutely."

It wasn't until that moment that I was sure that this surgery was right for me. I had apprehensions about this surgery. Actually I was scared... this was the first surgery that the doctors were actually going to be removing something from my body, and once my adrenal glands were removed there was no going back... its not like they could take them out and then if it didn't "cure" me the doctors couldn't be like "Oh this didn't work, let's put them back." Once they were out they were gone. I am not going to lie I was scared... no I was terrified.

Once Doctor McMullen said that he felt that this surgery was right for me I felt more at ease. I was still scared because again it was a permanent decision. I told Doctor McMullen that if he felt that it was truly the right choice for me then I was totally on board. I was just ready to be normal, and not be sick all the time. I wanted to move on with my life and not have this disease rule my life anymore. Doctor McMullen went over what the surgery would be like; he told me that the removal of the adrenal glands was actually quite simple and quick... once he got to them. It is getting to them that can take some time. I think he was shocked when my mom said "Is it because you have to move the spleen and the liver?" My mom is great... she had researched this surgery and actually knew more about what the surgery would entail than I did. He said "Yes, I am going to have to move your spleen and your liver to get at the adrenal glands." There are some risks during this surgery including damaging the liver or spleen if the surgeon is not careful, the risk of damaging the kidneys when taking the adrenal glands (because the adrenals sit on your kidneys), extreme bleeding, etc. Dr McMullen assured us that the chances of any of that happening were actually quite minimal and that he was confident that it would not happen. He had a confidence about him, not that he thought he was the closest thing to God, but that he was a skilled surgeon and knew what he was doing. His confidence made me feel more comfortable and by the time we left his office I too thought that this surgery was going to be my "cure". I signed the papers saying that I agreed to have this surgery and Dr McMullen told me that his office would set up a date for the surgery. I thought that it would be months before I would be scheduled but he said that the surgery would be the middle to end of April. My mom knew that me and my friend were planning on going to Mexico in the middle of April so she mentioned that to Dr McMullen and he said that he would make sure that the surgery was scheduled for after our trip. My mom laughed and said "If you do a good job on this surgery and help fix her (me) I will bring my horses down and you can ride my horse!" I thought Dr McMullen was going to think we were crazy but he was actually really excited about it and said that he was "looking forward to riding our horses"!!

We left the hospital and I think both my mom and I felt reassured. Dr McMullen is a great doctor, not only does he have an excellent record he made me feel like this surgery was MY decision, and he didn't try and use those HUGE medical terms to make himself sound brilliant and make me look stupid. He made sure that I understood what was going to happen and made sure that I was okay with everything. So Mom and I left the hospital feeling a whole lot better.

Mom and I were surprised, we were out of the hospital by about 12pm (which was actually only 11am our time) so were were going to be home by like 6pm (our time). It was a Friday and I didn't have to work the next day so I called my friend Diane and we were supposed to go for dinner that evening. The trip home was going really well until we hit just the other side of Whitecourt... then it was raining/snowing, and the road was really icy. I was quite nervous (I hate bad road conditions), but by the time we got to Valleyview the roads were quite a bit better. I was driving and mom had just fallen asleep. We were about 3 hours from home when I came over a hill doing about 140km and I had no steering... I realized that my belt had broke... so I pulled my vehicle over the side of the road (luckily the roads were great and it was sunny outside!!). I woke mom up and told her what happened and she got out and we looked under my hood... yup the belt was broke. OH GREAT!!

We phoned the Dodge Dealership in Grand Prairie (we were about 40km outside of Grande Prairie) and I told them what happened and explained to them that I was from outta town and I was stranded on the side of the road. The guys reply was "We can't help you because we close in 40 minutes, but I will give you the name of a tow truck company." (This is one of the reasons I will NEVER buy another Dodge). I called the tow company and they said they would come get my vehicle and we asked them if they could put a new belt on for us, they said they don't normally do it but because we were from out of town they would. The guy came and got us and towed my vehicle back to their shop (which happened to be just across the highway from the Dodge Dealership). The guy looked under my hood as he was explaining to me that belts don't just break normally and that there was probably something else wrong... then he said "You might want to phone for a ride home." Apparently my idler pulley was broke and they would have to tow my vehicle to a mechanic shop. Because it was Friday it probably wouldn't get worked on until Monday.

Mom and I called a cab who took us to the airport so we could rent a car to get home. After renting the car mom and I were FINALLY on our way again, I ended up having to call my friend and telling her that I wasn't going to be home until late and we would have to postpone our dinner.... it figures the ONE time we were actually going to get home at a decent time my vehicle breaks down. Mom reminded me that it was a good thing it didn't happen when we were going through all the crappy weather around Whitecourt because we could have gotten into a bad accident.... I hate it when she is right!

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!?!?!?!?!?!?