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! :)

"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!

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.

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.

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....

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.