Life goes on.... sort of.....

I finished my treatments in June of 2007. For the next 18 months I would have follow up appointments at the Cross Cancer Center. I started having to go every 3 months then every 6 months. This is because I had signed up for the "study" radiation and they have to document EVERYTHING. Every time I go there they get me to fill out a survey asking me questions such as "In the last week have you had trouble walking?", and I have to answer the same questions and draw a picture for them etc etc. It seems a bit ridiculous to me but I guess it is important in their research.



In a way I hate going to the Cross because everyone is so sick there... it is really sad. I knew 2 people that were having treatments there while I was there. Unfortunately both of them have passed away, one of them was the same age as me! It really made me realize that even though I may have some unfortunate circumstances I could be a whole lot worse.



Every time I go to the Cross Cancer Center I have to have MRI's done to see if the radiation is working. I would to have one MRI that last 32 minutes then a couple shorter ones. I am supposed to be strapped in my mask for these MRI's but Dave (the MRI guy) doesn't strap me in... he just made me promise not to move! If it was working then the MRI's would show my tumor shrinking. Every time I would have an MRI done I would pray that there would be some change... but every time I hear the same thing from the doctor "There is no significant change." Which actually makes me laugh because my doctor has a really thick French accent and he is VERY hard to understand. When he said that to me the first time I saw him I had to ask him to repeat himself like 4 times before I actually understood what he was saying. Every time I hear him say that sentence my heart sort of sinks. I feel as if I have gone through everything that I did with the radiation treatments for nothing. I started to feel as if I will never be cured... nothing is ever going to change and I am not going to lie... I have cried lots. It is just so frustrating hearing the doctors tell you that nothing has improved. Don't get me wrong, I am very happy to hear that it isn't growing again, but it would be nice to see some positive change!

Along with going to the Cross Cancer Center I have had to go to the U of A Hospital several times for check ups. Over the last 18 months or so they have played with my dosage of Ketaconazole trying to find what I like to call "the sweet spot". For me the "sweet spot" would be the right level of medication that would bring my cortisol and ACTH levels to a "normal" range. So far this hasn't happened. The doctors had me on 200 mg of Ketaconazole 4 times a day (which is a fairly high dosage) and my levels were still above the "normal" range.


About 2 months after my radiation treatments I started working part time in an office. It was great to be able to start moving on with my life and be somewhat "normal". The place that I work at has been great about allowing me to have the time off for my doctors appointments and letting me leave to go have my blood work done. I had to get my blood checked at least once a month. They would test my cortisol levels and ACTH levels as well as regularly checking me for diabetes (Cushing's Disease causes diabetes's in alot of patients). I would also have to do a 24 hour urine test, which meant for 24 hours I had to pee into a jug... trust me NOT FUN!!!! It was kind of a burden to have to pack around this jug, not to mention that it is not discreet at all... I mean come on does it have to be bright ORANGE?!?!



I know to some of you it doesn't seem that bad... but because of my disease I have had to go through alot that most people don't. On top of the burden of having to get my blood work done, the urine tests done etc I have had to be extra careful. I bruise super easy so it always looks like I get beat. I have to try and take my medication at the same time every day and if I missed a dose I became extremely moody, got outrageously upset over the stupidest things, I would feel tired alot of the time. If I didn't take my medication I would not be able to sleep properly so sometimes I had to take sleeping pills just so I could get 5 hours of sleep at night. This disease has had a negative effect on alot of my relationships (not just with Justin but friends and family as well). This disease has really effected my life.... both for the good and the bad. I have grown as a person and I think that this disease has made me more compassionate towards people. I have had to make alot of adjustments in my life but I still believe that "God will never throw something at you that you cannot handle". It has been a rough road and I am just hoping that one day I can help people understand this disease and how it really has a huge impact on a persons life.

The rest of the radiation treatments....

So my Dad ever so faithfully woke me up every morning to drive me into the city.... sat in the waiting room for me to have my treatment just so we could drive an hour and a half back to the ranch. Every day was pretty much the same..





My Dad made a comment about how he thought it was funny that after EVERY treatment I would start yawning as soon as we got to the automatic doors on the way out of the building... I hadn't even noticed that!





There was one day during that week that the tomo machine was "broken" and we had the choice to wait until it was fixed or to just add another day onto my treatments... after discussing it with my Dad we decided to just wait... I mean what else did we have to do?.... we only ended up waiting about 2 hours anyways so it wasn't that bad.....





Staying at the ranch sucked... since my Grandma passed away it was not the same. Al started being rude to me because I didn't care for the fact that he had a girlfriend already. It really hurt that after only about 3 months he already had moved on... he was with my Grandma for 23 years and he was able to just brush her aside... it really hurt and I didn't hide the fact that I thought that was awful. I was not rude to him but I didn't hide my feelings either.... he did not like that. So I looked forward to the weekends when I could go home and be away from him. He also made me feel like I was just lazy because all I did was sleep.... he didn't understand that I couldn't help it, that I needed to sleep as much as I did. My Dad was great though... he told me he liked it that I had to nap a lot because then he got to too! I love him so much and it was so great to have him down there with me.... he always seems to have a way of making me feel "normal". It was nice to spend a whole week with him... and the best part was that when we went home that weekend it was Logan's 2nd birthday so we had a birthday party for him at my parents. It was alot of fun to be around friends and family, and especially Logan. His laughter made everything seem okay and it helped me forget about being tired all the time.

The following week my Dad (Jack) and Shannon came to Edmonton with me. Logans Dad (Darren) had a birthday party for Logan that day at his house, and we didn't end up leaving the Ranch until about 6pm. We drove to Little Smoky which is where my Auntie Karen lives and we stopped and visited with her for a bit. We actually only made it to Whitecourt that night so we had to wake up early to make it to the city in time for my treatment. It was sort of weird to have my Dad there because he had never been there for any of my medical stuff and they didn't understand any of it. After my treatment we drove to the hotel that we were going to be staying at and Shannon wanted to go shopping... I was too tired so I fell asleep and when I woke up they were gone... must have gotten bored. They both didn't understand how tired I felt and I am sure it was hard for them to just sit around. The rest of the week went fairly well, I was tired but tried to keep up. We went shopping a bit and before I knew it the week was over and we got to come home again.



Nothing really extraordinary happened throughout my treatments. There were a couple days that the machine was broken, a few days where I felt a little nauseous and I continued to become more and more tired. My hair thinned a little but not alot, and my skin became dry. I made sure to continue using the baby products (such as the shampoo and lotions), I had fuzzy hair and smelt like a baby and I couldn't wear make up which was a little scary... but it wasn't that bad!!!

My mom came with me for the rest of my treatments. The treatments made me so tired that all I really did was sleep... it must have been so boring for her! There were a few days that the machine wasn't working so we ended up driving to Calgary because my mom had one of her horses in training with Clay Webster and he was living just outside of Calgary. I think we went there 2 or 3 times... I slept pretty much the whole way there, but it was nice to be around all the horses and to see Nikki (my moms mare). I was able to watch Clay ride some of the horses that he was training and I must say that is when I really got the reining bug. I decided that that was what I wanted to do as well... Clay and his wife Jenn are amazing people. Clay has helped me learn so much in the wonderful world of reining, and with my mare Luci.

The last week of my treatments I only had to go for 2 days so my little sister Jaimie came down with me. I think it really opened her eyes as to what I had to go through on a daily basis... she had never been to any of my appointments with me, just to my second surgery. She was a trooper though, not really fond of having to get up at 6 in the morning to drive to the city but luckily we only had to do it for 2 days! On the last day of my treatment I also had to go to the U of A hospital to meet with my endocrine doctor and the neuro surgeon to have a check up. My appointment was at 10am, but as you probably can imagine they were "running a bit behind schedule". I remember sitting there with Jaimie and she was tired and hungry and she looked at me and said "I hate your life". I laughed because I was used to this, the doctors appointments always seem to be behind schedule but you don't dare show up late just in case they actually are running on schedule, you wouldn't want to miss your appointment! My appointment was sort of a waste of time, the doctors didn't have anything new to tell me. They were going to keep me on the same dose of ketaconazole and I would have to come back in 3 months for another follow up appointment. So Jaimie and I grabbed some food and started our trip back home... the whole 7 hours of it! I don't think I ever did thank her for coming with me but just in case she reads this THANK YOU JAIMIE!!! I love you!

***This post is just a glimpse at my radiation treatments... it was so long ago that I know I probably have forgotten some things but my memory isn't so great. All the days seem to run into one another... so sorry!***

LEAVING TOMORROW!!

Okay I now this is going to be short but I have seemed to wait until the last possible minute (as usual) to pack and get ready to go.... I PORMISE I will catch up with my blog when I get back. As most of you know I am going to be having my adrenal glands removed and I have to leave tomorrow (Tuesday May 5th) to drive to Edmonton. I have to check into the hospital on Wednesday (May 6th) and my surgery will be on May 7th. I am not sure how long I will be gone but there are just a couple things I wanted to say before I go....

First I want to thank everyone who came and celebrated with me on Saturday night... I HAD SOOOOOOOOOOOOOOOOOOOOOOOOOOOO much fun. I also really appreciated all the comments and encouraging words that everyone said to me.... and sorry for crying like a baby!! It just made me realize how wonderful my friends and family are and that I am truly blessed! For those of you who couldn't make it... no worries!!

It is late and I have to be at work at 7 am(we are not leaving until 10am) so I am going to keep this short... I love you all and I can't wait to come back and keep riding, go camping... play ball... just be NORMAL!!!!!!!!! I LOVE YOU ALL and will talk to you all very soon!

First weekend home after 1st week of treatment

Justin and I drove home and got back to Fort St John in the late afternoon. I slept most of the way. Even after the first week I could not believe how tired I was. I couldn't even keep my eyes open most of the day.

But I was still extremely happy to be home. The week at Al's had been uncomfortable. He didn't really like the fact that I wasn't thrilled about his new girlfriend. My grandma had only been gone for a few months and they were together for about 23 years... how could he just get over that. He also made me feel useless because I slept alot. He didn't understand why I slept so much and I didn't care to try and explain myself to him.... he didn't care anyways. I wasn't looking forward to the next 6 weeks of staying there.

I got to see my family and sleep in my own bed! Three weeks prior to having started my treatments Justin and I had gotten our own place and I didn't even get to stay in it that long before my treatments started, it was nice to be HOME!

We didn't do a whole lot that weekend just enjoyed being at home. Sunday afternoon my Dad came to pick me up to go back to Edmonton because I had to have a treatment done Monday morning. Lets just say I wasn't overly excited to make the 7 hour drive back to Edmonton. But me and my Dad loaded up in the "Xploder" and made our way back to the ranch so we could start all over again on Monday morning.

It took quite a bit to convince my Dad that we should take my "Xploder" instead of his truck because it is mainly underground parking at the Cross and his truck would not fit in the underground parking lot. Finally he agreed... he hated driving my car cuz it was so much smaller than his truck but we made it safely down to the ranch... but not before stopping in Hythe to get some soft serve ice cream..... MMM... MMM!!!!

First week of treatment

Everyday for that week I had to get up fairly early to make the hour drive into the city. My appointments were always at the same time so I always knew what time to be there. It was hard to judge what time I needed to leave because sometimes we would get stuck in traffic and other times we would spend a long time just trying to find parking. Most of the time we were able to time it fairly good.

Every day I had to register at the front desk and be escorted to the tomotherapy part of the hospital. The doctors we so friendly and by the end of the week they pretty much knew my whole life story. They would always ask me "How is your nephew?", "How are your dogs/horses". They made me feel like a normal person (which is important to someone who always feels like they are different).

Throughout the week we went through the same routine... register at the front desk, walk down the quiet hallways to the tomotherapy area, sign in at their desk, sit and wait, go into the large room where the machine was, lie down on the table, get strapped into my mask, get moved into the machine, have the treatment done, get pulled out and unclipped, get escorted back to the main area, get in the vehicle, drive the hour to my Grandmas ranch.

After the first couple treatments I started to notice that I was feeling EXTREMELY tired. To the point that even while I was walking out of the hospital I could barely stay awake. I would fight to stay awake until we were out of the city then I would sleep the whole way to my Grandmas house. I would go downstairs and lie down on the couch and sleep most of the time until supper. I would wake up to eat then go right back to sleep. Sometimes I would sleep all night, and sometimes I would wake up for a little bit. I couldn't believe how much I was sleeping and yet I was still always tired.

I also noticed that my hair was starting to thin a bit. I mean it wasn't falling out in chunks like they told me, but it definately was thinning out. When I had baths I was extra careful and had to make sure not to scrub my scalp (they told me that would encourage my hair to fall out), I used baby shampoo, baby soap (my skin was really delicate), and I could only have a bath a couple times a week.

At the end of the week I was having my Friday treatment and I was very impatient. I was able to go home for the weekend because they don't do treatments over the weekend. Right after my treatment was over we jumped in the vehicle (okay I lied I didn't "jump" into the vehicle, but I was in my mind!) and headed for home. I couldn't wait to go home and see everyone. It had only been five days but I still missed my family, especially my nephew.

Ambers Paper

My friend Amber is currently in school (taking Journalism I believe). She started reading my blog and had to write a paper for one of her classes, she asked me if it would be okay for her to write one about Cushing's Disease and use my blog and/or me for information. I agreed. Amber found out quickly how hard it is to find useful information about Cushing's Disease in Humans. Alot of sites are geared towards dogs and horses. She agree with the rest of us that it is retarded that there isn't more information so that people could at least become more informed about this disease. Anyways this is a copy of what she submitted:



Living with Cushing’s disease
By, Amber Yake

When Stacy Ollenberger was 19 years old she began gaining weight at a rapid pace regardless of her healthy lifestyle, when she went to the doctor she was called a liar and told she was just getting fat.

“I saw six doctors before I was diagnosed,” Ollenberger said. “Doctors told me it was just weight gain and I had to change my diet and exercise.”

After seeing five doctors in two different cities, she finally saw a doctor who realized something was wrong with her. He suspected she had Cushing’s disease and referred her to a specialist in Edmonton.

“Finally I saw another doctor and he knew something was wrong. He didn’t know what so he did a bunch of tests and found out that I had extremely high cortisol levels,” Ollenberger said. “He had seen Cushing’s once before and suspected that is what I had but wasn’t a specialist so he referred me to Edmonton.”

According to Ollenberger, an excessive secretion of ACTH, which is produced by a pituitary tumour, causes Cushing’s disease. The ACTH then triggers your adrenal glands to produce excess amounts of cortisol. Symptoms include upper body obesity, round full face, increased fat around the neck, and thinning of arms and legs among other things.

Ollenberger showed all of these symptoms, however; since Cushing’s disease is so rare, none of the doctors she saw thought that is what she had.

“The specialists in Edmonton did not want to see me because they said Cushing’s disease is rare and they said that there was no way I had it,” she said. “They had all my blood work and stuff, my cortisol was more than 6 times higher than that of a “normal” person, and they told us that the tests were wrong and needed to be redone.”

Ollenberger was finally seen by specialists in Edmonton, AB and has since had two brain surgeries in attempts to remove the tumour on her pituitary gland increase. She feels angry at the medical system for not diagnosing her symptoms sooner.

“If I were diagnosed sooner the symptoms of my disease probably would not have gotten so bad and I probably would not have had to go through everything that I have had to—two surgeries, radiation and now I have to get my adrenal glands removed,” she said.

“I mean my family doctor made me feel like I was just a fat slob who didn’t eat right or exercise. He had been my doctor for years, and for me to gain so much weight so fast he should have known something was medically wrong.”

The doctors were unable to completely remove Ollenberger’s tumour. It’s not shrinking or growing. It is not an option to remove more of the tumour so her next option is to get her adrenal glands removed.

According to Ollenberger, this will make her body not be able to produce any more cortisol. Because you need cortisol to survive, after her surgery she will have to start medication to replace the cortisol that her body needs to survive.

“I will be on medication for the rest of my life,” she said.

Ollenberger is also working with her cousin to create a Cushing’s Awareness day in Canada. She wants to educate people so no one has to experience the things she has.

“It only takes one person to educate many and that is what I would like to do, bring awareness to this disease so others do not have to go through what I had to” she said.

Radiation Treatment #1

So my mom and I went back to Fort St John to wait until my first treatment. My first treatment would start on May 8th 2007. My treatments would be done once a day 5 days a week (Mon-Fri) unless there was a holiday. When the time came for my treatments Justin Came down with me for the first week. We stayed at Al's house which was the guy my Grandma had lived with. They live about an hour outside of Edmonton so we had to drive in every morning.





The first morning of my treatment I had butterflies. We could only find underground parking so it was a good thing that we drove my vehicle! After finding a parking spot we walked into the Center.. I felt as if I was going to throw up. I was still unsure of what to expect as far as my treatments would go. I had to make sure that I had my identification card to register at the front desk. We had to wait a minute because apparently the part of the hospital that I needed to go to you needed to be escorted to. You weren't allowed to go by yourself. That in itself sort of scared me!





The people that escort you are all volunteers. Let me tell you that they are some of the nicest people I have met in a long time!! I got to hear all sorts of interesting stories over the next 7 1/2 weeks because I would get a different person almost every day! Once we were escorted down the hallways down to the tomotherapy area I had to drop off my paperwork at the desk and change into the wonderful hospital gown. There were 3 people who worked in this area, and I can only remember 1 of their names but they were all SO nice. Julie walked me through some large automatic doors (Justin had to stay outside, no one else was allowed to be in the room but me). I saw the large machine that would be giving me my treatments.



I have to admit I was almost scared to be in the room. The machine was large, the room was cold, and there wasn't even a chair to sit on in it. They must have known I was nervous because they did everything they could to make me feel more comfortable. They got me to make sure I had no metal in my hair (bobby pins or elastics) and asked me to lie down on the long narrow table. There was a headrest sort of thing that I had to put my head in. My heart was pounding. They were very good about explaining everything to me. I had never been treated as good at a hospital as I was being treated here. They were asking me questions about where I lived, my family, what I enjoyed doing etc. Next came the mask. They had attached clips to my mask now so that it would clip to the table. The mask was put over my face (I had to close my eyes because the mask was so tight I wouldn't be able to blink and my eyes would dry out if I left them open). They started to clip my mask to the table... my heart was racing. Because my eyes were closed I couldn't see what else they did to prepare. I could hear them walking around but they made sure to keep talking to me so that they wouldn't scare me. They told me that I would hear some strange noises and the I would be slid into the machine. The doctors were very good about talking me through the procedure. They were not able to stay in the room with me with I got the treatment but they would be monitoring me during the treatment and they gave me a button to push in case something went wrong and I needed to stop during the treatment.



The doctors told me that they were leaving the room and going into their room to monitor me. They told me that the treatment would be about 7 minutes long. I heard them leave the room and over the intercom they said that they would be moving me into the machine and the treatment would be starting.



The table I was on started moving into the machine. My heart began racing again but I was trying not to move. My head was clipped to the table and I couldn't move. I am claustrophobic so I was sort of panicking. The machine started making loud noises. It almost sounded like an airplane was fling around my head. There was some clicking noises. I didn't feel anything touching me or entering my body. Before I knew it the machine stopped making noises and I was being pulled out. I could hear Julie and the other doctors talking telling me that the treatment was over and that they would be helping me out of my mask shortly. As they were undoing my mask they commented on how they noticed that I seemed to be uncomfortable during the treatment. I told them it was because I was claustrophobic. They told me that I could ask the doctors for something to help me relax so it wasn't so uncomfortable for me.



Other than my feeling claustrophobic I didn't have any feelings of being in pain. I didn't feel any different than I had when I went into the machine. The first treatment was complete and I felt okay. Maybe this wasn't going to be so bad after all!



I went back out to the waiting room and got changed out of the gown. The doctors then escorted Justin and I back out of the tomotherapy area. Now I got to go home, just to come back the next day!