Tuesday, November 10, 2009

What I remember the days after my surgery.........

This is a picture of the adrenal glands and how they sit on your kidneys


This is a real picture of the adrenal glands (not mine).




So again I don't remember a lot after my surgery. I do remember asking the doctors if I could get up.... they laughed at me and simply said "No." I was on some pretty heavy painkillers for the first bit which I assume is why I don't remember very much.


I do remember that my stomach was quite sore... almost felt like I had done a MILLION sit

ups... not that I have ever done that many but you get the point. I had 8 incisions in my stomach









This is NOT me... but this is similar to the incisions that I had, except I had 8 not 6.... I had one in the center of my stomach right below my sternum bone... that was probably the most painful one.... the doctor had made an incision then had to later extend it because he couldn't get to where he needed to with the first cut.





I remember waking up and my Mom, my Aunt and my Cousin Tahlia were all there. I remember asking the doctor if I could get up, and they just laughed then I fell asleep again. I drifted in and out of being awake for a bit. The first day that I really remember I remember being quite sore but determined to sit up. I remembered the doctors saying that if I got up and walked around, the sooner I would be well enough to go home. So my mom helped me sit up in my bed.... which was extremely painful.... you don't realize how important your stomach muscles are until something happens to them! I sat up in my bed for a bit then I had my mom help me up. I couldn't stand straight because it felt like I would rip out all my stitches.... so I "granny walked" to the bathroom. Let me tell you... that was a scary site.... my hair was everywhere, my face well lets just say no make-up.... and ya I looked awful..... I was finally able to see the damage myself.... Up until this point I wasn't able to see my stomach very well. I knew there were bandages on my incisions but I couldn't see all of them. I lifted up my very stylish hospital gown and got to see all 8 incisions at once.


My first thought was "Man I look like Frankenstein!" I honestly wanted to cry.... my body is so scarred and damaged.... and I know it won't ever go away.... I will have these scars forever. I hate my body, and there is nothing I can do about it. I could see the blood leaking through some of the gauze, and underneath the gauze I had tape, then under the tape I had stitches. I was only in the bathroom long enough to look at my battle scars and to go pee... I had my mom knocking on the door asking if I was okay. I was getting pretty good at manoeuvring the IV pole around the small area in my room. Walking to the bathroom and back was enough for me at that point. I had to lie back down for a bit. My mom helped me get back into bed... there was a real trick to getting in and out of my bed without hurting my stomach. first I sat down on the bed facing the window, next I turned my body and held onto the railing of my bed and SLOWLY eased myself down. The first couple days I needed my moms help because it hurt to much to do it on my own.



Over the next couple days I had my mom help me get up and go for "walks". Our walks at first were only around the ward... that is all I could handle. My mom was VERY encouraging, I remember the first day that I was able to walk to the elevator she was very excited and kept encouraging me (but also kept reminding me not to over exert myself). I was actually progressing quite fast... even when my mom wasn't at the hospital I would go for "walks" by myself and every time I went I pushed myself to go just a little bit farther. I was still having trouble breathing properly so the doctors had me blow into this little hose and there was a little ball inside of it with a happy face on it that when I would blow into the hose I was supposed to hold it between 2 lines for 5 seconds. I was like "Seriously? This will be EASY....!"... well let me tell you it was not. I couldn't even do it for for 2 seconds! I blew into the thing about four times and every time the little ball would just fall back down to the bottom... with that stupid little happy face staring at me.... the doctors kept telling me that if I kept practicing eventually I would be able to do it, it was just because I was laying on my back for so long and I just needed to get my lungs in shape again.


Everyday was sort of the same... in the morning they would come do blood work at 6 am, then the nurse would come in and take my vitals, and everyday they would ask if I wanted to shower. It was a chore for me to shower. The water hurt my stomach (because of the incisions), it took me a long time to wash my hair because I would have to take breaks (yes I know this sounds bad, but I honestly got tired just washing my hair!) Then once I was done showering it took me about 10 minutes just to dry off and put the beautiful hospital gowns on (and yes I am being sarcastic about the "beautiful" part). Then I would go back into my room and eat my breakfast (which was usually either apple or orange juice with a little box of Cheerios and milk) and wait for my mom to arrive. Once my mom got there we would sit and visit, go for short little walks, and eventually I was strong enough to venture outside. I was POSITIVE that I would be going home soon, the doctors had said I would be able to leave on Saturday, May 10th, but it never happened. Now it was Sunday and I was POSITIVE that I was well enough to go home. We had to wait for the doctors to come later that afternoon and let me know if I was able to or not... mom suggested that we go for another "walk" so off we went.


About halfway through our walk I started to not feel so well.... so I suggested that we go back to my room so I could lie down. When we got back to the room I went into the bathroom, then all of the sudden I was in pain.... not just a little bit.... A LOT!!! I tried to breathe deeply but it wasn't helping.... I stumbled out of the bathroom and leaned up against the bed, I thought I was going to pass out from the pain. I told my mom to get a nurse.... QUICKLY!!!!!! She ran in a panic to get a nurse. She wasn't sure what was going on but later she told me that she knew I was in pain because my robe was undone at the back and my bare butt was hanging out... she tried to cover me up but I just pushed her away to go get a nurse.... it wouldn't have been so bad but there was a window right beside my bed which gave people in the elevator a plain view! Once the nurse came into my room she asked what was going on.... I told her that I didn't know all I knew was that I was in A LOT of pain... they gave me more pain killers and after suffering for about 15 minutes the pain killers took effect and I was able to rest somewhat peacefully.


Later that night the doctor decided that I needed to have an x-ray done to see if they could determine what had cause my sudden pain attack. A guy came to get me with a wheelchair and wheeled me down to X-ray. A couple hours later they came into my room. They had decided that the reason I was having difficulty breathing was that my lung had collapsed during my surgery (which is fairly normal for having a 6 hour surgery), and the reason I had so much pain in my stomach was because my bowels were not working and everything had backed up inside me. They told me that the bowels are very touchy and if they even get bumped a little bit they tend to stop working. I was told that the surgeon had probably "bumped" my bowels and they stopped working. They would start again but it could take a little time.... I told them that they had better keep the painkillers on hand because I swear that was the WORST pain I had ever been in!


That happened Sunday evening and they told me it would be a couple more days before I would be allowed to go home..... great!

Tuesday, October 6, 2009

Auntie Randas Thoughts on my Post Surgery

Because I don't remember the first couple days following my surgery (probably due to the painkillers I was on!!) Auntie Randa has helped me fill in the blanks.This is what Auntie Randa has written for me:

"The day Stacy had surgery was very eye opening to me. I had never been at one of Stacy's surgeries so I really didn't know what to expect.


My sister in-law (Stacy's mom) and myself waited for the surgery to be over and after a few hours (close to 6 hours!) the surgeon came out with good news; the surgery went excellent. He was very pleased with the results. After some discussion he left us with the good news and we again waited for Stacy to come up to her room. Within the hour she was brought back and we had our first chance to see her.



Stacy seemed alright, although she was on many painkillers and would fall asleep after just a few minutes. I could tell there was definate discomfort, and she needed medications often to dull the her pain. Once she was in her room and comfortable the Doctor came in to see Stacy and speak to her mom. As with any surgery the aftercare is very important, and Stacy did have some good care. Her pain was significant but she handled it very well.


The second day Stacy started running a fever and her pain was not getting any better. Her primary care Doctor came back and adjusted her meds. Because Stacy hardly complains the pain was definately high.



After a couple days Stacy was starting to get up and about, walking around pushing through the pain. She wasn't able to walk far for the first couple days but each time we got up to walk around she went a littler further. Considering the exent of her surgery she was so strong and determined to get better and be able to go home.

I was so impressed with all of the strength Stacy displayed. In spite of her discomfort she got up and about and kept moving towards being able to go home. Stacy did have some other complications, but all in all it was a successful surgery, and she came through strong and healthy. We are so proud of her. "



Thank you Auntie Randa, not only for writing this for me but for being there for me. It meant alot that you and Tahlia came down to support me and my mom... I love you both very much!


PS. I LOVE LOVE LOVE my purse! :)


Friday, September 18, 2009

"You are so strong...."



I love it when people tell me this. It reminds me of how I have overcome so much at a fairly young age... I mean how many 24 years olds can say that they have had 2 brain surgeries, 7 1/2 weeks of radiation, and an adrenalectomy? But the truth is I am not really as strong as people think... I would not have chose this, I got given this. I believe that it has made me a stonger person than I would have been if I did not have this disease, and I like who I have become. Maybe I am strong... but trust me.... it is only because I HAVE to be!








Wednesday, September 16, 2009

I am not who I was Six years ago

"The person that I am now is not the person I was 6 years ago"

This is the truest statement I think I have ever made. Six years ago I had just graduated from high school, dating who I thought was the person I was going to be with for the rest of my life, going to school full time and working full time. I was busy, I was happy, I was healthy.... or so I thought..... in May of 2005 it felt as if my whole world had fallen apart.... Clayton and I broke up, none of my "friends" wanted to hang out, and I was FAT.... it seemed as nothing more could go wrong....

My life has become one that consists of everyday struggles and challenges, the struggle to find answers for the illness that has taken its toll on my body. I have to struggle through endless doctor’s appointments where I am met with cynicism and arrogance, and have been told several times that the treatments they have said would work to cure me have failed miserably. I struggle daily to put on a “happy face” so that my family will not see my pain. I have come to realize that the biggest struggle is within me. How do you keep a positive outlook when you are so angry because your body and mind are letting you down? My story is one I hope that others don’t find themselves living one day but if they do maybe by sharing my struggles it will help them realize that they are not alone. This disease is not a fairytale so there will not be any “happily ever after” but with knowledge and determination there will be a “getting better everyday!” Remember that you may stumble along the way and there will times you want to give-up, it has happened lots to me..... but when that happens take some time for yourself.... talk to those who listen without judgement and don't give up, because if you give up then the disease wins.... if you fight hard and do research and find something that works for you, you can win the battle.....

30 Things About My Invisible Illness You May Not Know:

I have "met" alot of "Cushing's Buddies" and other people that have suffered through what I have or are going through what I have and they have been a GREAT support! One of my "Buddies" had posted this and I "stole" it from her.... thanks Susan Kate.....

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Cushing's Disease before my Adrenalectomy/Adrenal Insufficiency (Addison's Disease) after my Adrenalectomy. My Adrenalectomy was performed on May 8th, 2008

2. I was diagnosed with it (Cushing's Disease) in the year: 2005

3. But I had symptoms since: When I look back I guess the sysmptoms started to show in 2003.

4.The biggest adjustment I’ve had to make is: accepting the way I look, I still have not done so
but I am getting better

5. Most people assume: that if I would "just exercise more and eat less" that I could lose the weight the Cushing's put on me, and that my muscles would get stronger, and then I would be all better, however this is not true, I am on steroids that make it almost impossible for me to lose weight.

6. The hardest part about mornings are: getting up... I never feel rested.... I can never seem to get more than 6 hours of sleep per night.... most times its less

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my cell phone

9. The hardest part about nights are: hmm.... getting to sleep early

10. Each day I take __ pills & vitamins. (No comments, please) now I am down to a total of 3 pills per day

11. Regarding alternative treatments I: am interested in learning about them, but need to put my trust in the proven treatments that are currently keeping me from going into a coma or dying.

12. If I had to choose between an invisible illness or visible I would choose: neither....

13. Regarding working and career: It has been hard but I have gone back to work after each surgery and radiation treatments.... I am now working 1 full time job and 1 part time job. I am tired ALOT but I push myself to do it....

14. People would be surprised to know: that I believe I got this disease for a reason and it has made me who I am and I like who I am

15. The hardest thing to accept about my new reality has been: That I am fat... oh and after my last surgery (adrenalectomy) I was told I am not allowed to go to Brazil like I had planned.... but you just wait.... I will.....

16. Something I never thought I could do with my illness that I did was: I am not sure.....

17. The commercials about my illness: there are none... YET!

18. Something I really miss doing since I was diagnosed is: being as physically active as I used to be... playing hockey, baseball, etc.

19. It was really hard to have to give up: I haven't really given anything up.... just have to do it in moderation... I am not as active but I try.... ok thats a lie..... I am not as social as I once was, I can't get over the idea that I am just a fat slob and thats what people see when I go out.... I am working on it tho... I am starting to go out more.......

20. A new hobby I have taken up since my diagnosis is: starting a Cushing’s support group on facebook, researching Cushing's and Addison's, writing a blog....

21. If I could have one day of feeling normal again I would: MAKE THE DAY LAST FOR ABOUT A YEAR! Then I would do EVERYTHING POSSIBLE!

22. My illness has taught me: Not to judge people by their looks, that God will only throw at you what you can handle (even if at the time you think you can't), and REAL friends and family are all that matter, and they will love you know matter what you look like

23. Want to know a secret? One thing people say that gets under my skin is: "Have you taken your pills?".... sorry mom but it drive me CRAZY!

24. But I love it when people: listen to me and want to learn about my disease (s), when they treat me like I am normal... not sick,

25. My favorite motto, scripture, quote that gets me through tough times is: I have 2... God will only throw at you what he knows you can handle, and "If God leads you TO it he will lead you THROUGH is"... I am not religous but I do believe in a higher power.....

26. When someone is diagnosed I’d like to tell them: Research..... do as much as you can, talk to different doctors, people who have had it or have gone through it..... get as much information as you can before deciding on treatments!

27. Something that has surprised me about living with an illness is: How some family doesn't care enough to become informed.....

28. The nicest thing someone did for me when I wasn’t feeling well was: my mom and Dad (Jim) have done lots for me.... done my chores when I was tired, helped me out financially when I wasn't able to work, listen to me when I am scared/sick/tired.... they have been there through EVERYTHING and I love them very much!

29. I’m involved with Invisible Illness Week because: I want to do whatever I can to make sure that non-ill people are made aware of Invisible Illnesses and the people who suffer from them are REAL PEOPLE WITH REAL FEELINGS, and are NOT just inconvenient burdens who can be set aside out of sight and therefore out of mind.

30. The fact that you read this list makes me feel: like you care.

Tuesday, August 4, 2009

Surgery.... AGAIN

The morning of May 7th 2009 I was woke up at 6 am. The nurse came in to take my vitals. Around 7 am I got up and went downstairs so I could enjoy the beautiful morning (okay so I was having a smoke!), and while I was doing that I also called my mom who was staying at a hotel with My Auntie Randa and her friend Tracy (whom I refer to as Auntie Tracy). She said that she would hurry and get dressed and stuff to get to the hospital. I told her there was no rush because they were not coming until 10ish to prepare me for surgery.

The morning seemed to fly by because the next thing I knew my Mom, Auntie Randa and Auntie Tracy were sitting with me in my hospital room.
Some guy came in and asked me to change into the beautiful hospital gowns that I would have to wear for the next couple days (sense the sarcasm?). I went into the washroom to change out of my nice comfy jammie pants into this hideous hospital gown that makes NO ONE look good.... took one last look in the mirror, took a second to regroup.... I was scared... it was getting close to crunch time..... I was starting to get nervous but I didn't want to let on.... Stay strong girl... if you cry they (meaning my Mom and my Aunts) will cry too... they don't need to worry. I reminded myself that I had the best doctors taking care of me and then I came out of the washroom.


Me and my mom waiting for me to go to surgery... the bear in the picture is the one that Jaimie (my sister) got everyone to sign at my PreSurgery Party, the Kitty that my mom is holding is what my friend Jessica got me before I left... both the Teddybear and the Kitty were very comforting... probably more of a comfort than any 23 year old woman should find in stuffed animals but.... they got me through alot!
Me and my Auntie Randa who flew from Kelowna to be with me and my Mom



Me and Auntie Tracy before surgery


Soon a nurse came in to put the IV in... and then I had to move onto the bed that would transport me into the operating room.... then a nurse came in and told me that they would be moving me out of the room that I had spent the night in to another ward... so my mom had to quickly gather all my belongings and pack them with her....it was about 10:20am... the guy wanted me to get on the bed and they would be transporting me to the operating part of the hospital... all the sudden I felt cold... My mom requested a heated blanket for me and the nurse ran and got one for me. It helped me feel a bit better.... not much but a bit.....

I was holding onto my IV pole as the man turned my bed around and started to make our way out of the ward that I was in, and down to the operating area. My mom and Auntie Randa were allowed to follow part of the way. The guy pushing my bed stopped at the big doors that lead into the operating waiting area. This is where I had to say goodbye to my Mom and Auntie. I kept telling myself on the short journey to these doors that I wasn't going to cry; but as soon as I had to say bye to my mom I started to cry... I didn't want to do this again.... no more pain please! The first picture is me saying goodbye to my mom (I was crying by this point) the second is of me giving Auntie Randa a hug before I went through the operating doors.
Then it was time for me to go through the doors, I never looked back. I was trying to wipe my tears so that the poor guy pushing me wouldn't think I was a big baby.... probably too late at that point... but I was trying to save my pride. The guy wheeled me in to the waiting area and parked me in my waiting stall. It was quite busy this morning... people being wheeled in just to sit and wait. As I was waiting I noticed a picture on the wall. It was the most beautiful scenic picture I have ever seen... and it just so happened to be of Brazil. I am planning on going there in the Spring to do some volunteer work at a hospital... I remember thinking... "It must be a sign, this surgery will go great and I will get to see this in the Spring." It helped me calm down a bit.
The anesthesiologist came to talk to me, got me to sign some papers and asked a few questions. Shortly after she left I was being wheeled into the room where I would be having my surgery. It was a small room over in the corner and the lady had to manouver my bed just right just to get it in there! I wasn't used to being in such a small room! Dr McMullen was in there. He looked a little different than when I had met him before... he was in his scrubs.... but he made me feel comfortable... he sounds very confident and I like that in a doctor, especially one that was going to be cutting me open! The next few minutes they put heart monitors on me... I hate the gues stuff they put on you... that stuff doesn't come off easily and it feels nasty! The next thing I remember is them telling me that I was going to sleep.... then it was lights out.

Friday, July 31, 2009

May 6th 2009- Day before surgery

I woke up and walked out to the kitchen where my mom and Sherry were. Sherry was busy scurrying around to make us breakfast (nothing like bacon, eggs and homemade hash browns... mmm!!) and my mom was sitting at the table drinking coffee. They had already gone out to do chores (they let me sleep in :) ). I had to phone the hospital at 11:00am to find out what time I had to be at the hospital to check in. So Sherry, Mom and I ate breakfast and sat at the table chatting for a bit.... listening to Maggie and Ike snoring under the table (they are Sherry's dog..... coolest dogs ever.... they are boxers who seriously are like kids!). After we cleaned up the dishes from breakfast we sat down and were visiting again, I decided to use Sherry's computer to go on Facebook and get my last fix of it for a little while. It was kind of overwhelming how many people had wished me good thoughts... comforting to know I have so many good people in my life. I realized that it was almost 11am and that I should phone the hospital.

When I phoned the hospital they still did not have a time for me to be at the hospital (they were waiting for a bed to open) so they asked if I could phone back at 12pm. I was relieved and at the same time annoyed, I just wanted to know when I had to be there and I just wanted to get this stupid thing OVER with! But I knew that sometimes it is hard to get a bed the hospital is always so busy....

So I called the hospital back at 12 and they told me that I was to check in at admissions at 4 pm. My stomach started to tighten.... I am not really sure why. I think it was because I was hoping that they would still be like "Oh you are fine now, we don't actually have to do this surgery". I knew that that wouldn't happen but I was hoping!

I told my mom what time I had to be at the hospital so she knew when she had to drive me in. We decided that we would leave right away because Sherry lives 20 minutes outside of Edmonton and we wanted to do a bit of shopping before I had to be admitted, plus we also had to pick up my Aunt from the airport who flew in from Kelowna to be with us. It was sad to say goodbye to Sherry and Ike and Maggie, but we gave them all a round of hugs and I told them I would see them soon!

Mom and I drove into the city and did a bit of shopping.... she is the greatest! She bought me a fuzzy super soft bath robe that I could wear in the hospital, a pair of comfy sweats (for after the surgery) and just little things that I had forgotten I would or want!

We were taking our time in the store and realized that it was almost time to pick up my Auntie Randa from the airport. We hurried and paid for our stuff and then headed to the airport... we were a little late... haha poor Auntie was waiting on the sidewalk for us! By this time it was almost 4 pm and I had to head to the hospital.



North side of the hospitalWhen we got to the hospital Mom dropped me off at the front doors with my suitcase and went to park the truck. She told me her and Auntie would meet me in the admitting area.

The ladies in admitting got me to fill out all the paperwork and put on my wrist bands (for identification) then we went upstairs to my room.... nope nothing had changed from the last time I was in there. I get a horrible feeling in my stomach when I think about staying in hospitals..... I mean its not bad as far as hospitals go but its still a hospital. I set my bags down and sat down on my bed. The lights were not on, but I didn't want them on.... I sat there for a moment trying to relax then the nurses came in to take my vitals (blood pressure, pulse and temperature). Then because I wasn't having anything else done that evening the nurses said that I was allowed to go out for supper. I was excited.... One more meal of NON HOSPITAL food! Oh and of course I chose the Olive Garden... I LOVE LOVE LOVE it!.....

So we went to the Olive Garden... my mom's friend Tracey met us there. She had drove down so that my mom wouldn't have to be by herself while I was in the hospital. We had a great meal (and a good looking server :)...) then it was time to head back to the hospital so I could get to sleep. Mom dropped me off and they headed to their hotel. When I was walking back into the hospital it was so quiet... usually during the day it is so busy and there are so many people bustling about but at night it is so quiet... it is eerie........

I rode the glass elevator upstairs to my room, changed into my jammies and turned on my iPod. I fell asleep listening to my music....

Tuesday, July 28, 2009

Preparing

So for the next couple weeks I was just trying to prepare for when I would be gone.... I had to make sure someone would take care of my dogs, Harley gets so sad when I leave him I don't think Spice really cares but... I still wanted to make sure that someone would be able to give them lots of attention while I was away so they wouldn't be sad. I also had to make sure that someone was watching my horses and making sure that they were getting all their feed, cleaning stalls, cleaning pens etc. As if it isn't hard enough to find someone to watch just my animals but because my mom was coming with me we had to find someone to watch all her animals too.... so that's a total of 5 dogs, and 5 horses...... luckily for us my mom has some great friends that agreed to care for the horses and my sisters were going to take turns with the dogs.
The next thing that I had to do was make sure that someone could cover me at work. We have a part time lady that we asked to cover my position while I was gone. So I had to go through everything that I do on a daily basis and write it out for her. This actually took a while because I had to write EVERYTHING out.... even things that I thought were easy. I had to remember that poor Wilema had never done my job and she wouldn't have a clue of what to do. It took me about a week to go through everything, even when I thought I had everything wrote out something would come up that I forgot. I finally thought I had what I like to call "Stacy's Bible" completed. Wilema came in and I showed her the "Bible". I had forgot what it was like for me when I first started (I had been doing this for 2 years and it came really easy for me now). So for the next couple weeks she came in a couple times a week to learn my job. She did really well but I was wishing that I had more time to train her. Plus about 4 days before I left for my surgery one of the programs that I use was updated and totally different than what I had been teaching her.... so now I had to learn it and teach Wilema how to do it..... I was a little stressed out! Scott (one of the guys that I work for) said for me not to worry about it, they will figure it out, and if not then it would be there for me when I returned!
I found out that my surgery was going to be on May 7th (which happens to be my Dad Jack's birthday). I was going to have to be admitted to the hospital on May 6th for pre-surgery admission. This meant that my mom and I would have to leave on the 5th. Time flew by because I was busy trying to get everything ready for when I was gone. I didn't know EXACTLY how long I was going to be off work (Dr McMullen said about a month but Doctor Chik said at least 2 months) so I wanted to make sure that Wilema could do my month end stuff and everything that needed to get done for at least a month. Mom and I hauled hay for the horses, I made sure that my dogs had their little treats, and I spent as much time as I could doing the things that I like doing.... riding my horse, playing with my dogs and spending as much time as I could with my family (especially Logan).
The weekend before my surgery my sister Jaimie organized a "Pre-surgery Party" for me and invited all my closest friends and family. She had it at a local pub and had it decorated and bought a teddy bear that I could take with me to my surgery. She bought him a little t-shirt and got everyone to sign it for me. Jasta (a close friend) got everyone to stand up and introduce themselves and say how they knew me or something nice about me.... I was doing okay until Kaelyn stood up to talk. Kaelyn and I have known each other since grade 11 and I absolutely love her.... she is one of my closest friends. Her and I have been through a lot together and she came and seen me in the hospital when I had my first surgery.... she has seen me at my absolute worst and she still loves me! Anyways I was bawling and it just got worse as more people stood up to talk.... it really made me realize that I have the most WONDERFUL friends and family... and I know that they all really care about me (I am not going to name everyone but you know who you are... and I just want to say that I love everyone of you and I have so much fun when I am with you guys!). We stayed at the pub for a while and played some fun drinking games (which even my mom and Dad participated in... although I think they were both drinking Coke not booze!) and we all had a blast! After that we went to the bar and I must say that the rest of the night is kind of a blur..... but I am sure it was a good time! :)
So I worked that Monday and half of Tuesday and then my mom and I headed for Sherry's house. Sherry is a family friend and she lives near Edmonton. She has always offered for me to stay with her and I have a couple times when I go to Edmonton. Great lady. Anyways mom and I arrived at Sherry's around 9 pm and we had supper and just sort of relaxed. I had to call the hospital the next morning to find out what time I was supposed to be at the hospital. I didn't get a lot of sleep that night.... my head was spinning.... I almost couldn't believe that I was going to have ANOTHER surgery. I had it in my head that my body would have straightened out before we got to this point and I wouldn't have to do this again... I wouldn't have to stay in the hospital, I wouldn't have to have IV's all over and I wouldn't have to go through all the pain that goes with having surgery. I ended up crying myself to sleep.... I was scared.

Tuesday, July 14, 2009

The Call

I was anxiously awaiting the phone call from Dr McMullen's office to tell me when my surgery was going to be (I tend to get a little impatient when I am waiting). It was about the middle of April by this time. Finally Dr McMullens office called one day while I was on my lunch break, and I took a deep breath because as much as I was anticipating this phone call I suddenly got nervous. I answered the phone and the lady said that she was calling because they were having trouble billing my appointments or something and needed to make sure they had the correct information.... SERIOUSLY?! I was expecting to be told my surgery date.... not to give them the correct spelling of my name!

Once I gave the receptionist all my correct info she was about to hang up and I was like "Oh wait.... I was just wondering if you were able to book a surgery date for me yet?" She was like "Oh ya... it will be on May 7th. Dr McMullen would like you to be admitted the day before so you will have to call the adult surgery department the day before at 10:30 am to find out what time you will be able to check in." She gave me the number and I was trying to write everything that she had said down like the phone number for the surgery department, dates, times etc.

When I got off the phone it really hit me that this was real.... that I was really going to be having ANOTHER surgery.... I honestly was not sure I could handle another one. It made me start thinking of what I went through with my previous 2 surgeries..... all the aches and pains that go along with having surgeries and incisions, having to stay in the hospital again, being hooked up to IV poles, seriously.... I didn't think I could do it again. I just wanted it to be over, I wanted to be healthy, and happy. I started to wonder (like I had MANY MANY times before) what I had done to deserve having this disease, and why I was chosen to go through it all. I look at my sisters and my friends and they have never had to have a major surgery, they don't have to schedule their lives around surgeries and doctors appointments. They actually get to use their holidays for fun stuff.... not to go to Edmonton for doctors appointments. I am not going to lie, I am jealous. I know it sounds like I am feeling sorry for myself... and I guess in a way I am, its not fair. But I have to keep reminding myself that life isn't fair, and it could always be worse. I still wanted to cry, just have a meltdown. But what would that help?... it wouldn't change the fact that I still needed to have another surgery, it wouldn't change the fact that I have Cushing's Disease. I got dealt this hand in the game of life, and I guess I better learn how to play it to make the most of it!

So now I get to wait for 3 more weeks.... great more time to think about it! Luckily I am a fairly busy person.... it helps me to stay busy because then I don't sit and dwell on it for long. I don't have alot of time to sit and feel sorry for myself....

Monday, June 29, 2009

"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!

Friday, June 26, 2009

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....

Wednesday, June 17, 2009

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.

Monday, June 15, 2009

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

Monday, May 25, 2009

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.

Saturday, May 16, 2009

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!***

Monday, May 4, 2009

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!