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!

Next Step.....

The doctors told me that the next option available for me would be radiation treatment. The radiation would hopefully be able to shrink the tumor. The tumor was still causing my pituitary gland to secret an abundance of the ACTH hormone which was causing my adrenal glands to produce too much cortisol. My levels were still extremely high and as long as the tumor was causing my pituitary to over produce the ACTH my cortisol levels were still at a dangerous level. If I underwent the radiation treatments the doctors were hoping that the radiation would shrink the tumor so that it wasn't affecting my pituitary gland.



The doctors suggested that I should have stereotactic radiation. With the stereotactic radiation I would only need one treatment. The radiation beam with the stereotactic radiation is a larger, stronger form of radiation. They were hoping that with that type of radiation that it would hit the tumor hard enough that the results would be more effective. Unfortunately they didn't do that form of radiation in Edmonton and they would have to make arrangements for me to go to Calgary. The Tom Baker Cancer Center offered this type of radiation and they would put forth a request for treatment.



A couple weeks later my mom and I had to drive the 12 hours to Calgary to meet with the doctors. I met a doctor that was currently doing his internship and we started doing the tests to see if I was eligible to have this type of radiation treatment. I can't remember this doctors name but he was really great... he made me feel normal and didn't treat me like a case number. For me that was really important, I didn't like feeling like a number, I liked the doctors to think of me as a person not just a file number. I had to have more MRI's done and a couple blood tests. When I got to meet with the doctors again they told me that I was not a candidate for the radiation. The tumor was too close to my optic nerves and if they did this treatment there would be a high possibility that I would loose my vision. I would have to opt for a longer less concentrated version of the radiation treatment. The doctor felt bad that I had drove all that way for pretty much nothing but I understood why he didn't want to go ahead with this treatment.... I didn't want to loose my sight. So he said I could have the other treatment in Calgary or I could also have it in Edmonton at the Cross Cancer Center. We opted to go to Edmonton because it was going to be approximately 7 weeks of treatments and it would be closer for us to travel.



A couple weeks after that we were called to go back to Edmonton, this time not to the U of A Hospital but to the Cross Cancer Center.

I was asked to participate in a "study" type of radiation called "tomotherapy". I asked the doctors why it was a study and they said they have been doing it for a while and the only reason it was still classified as a "study" was because there wasn't any research able to be done on the long term effects because it hadn't been around that long yet. I asked them to explain the difference between tomotherapy and other types of radiation treatment. The tomotherapy was less invasive(meaning it wouldn't damage a whole lot of surrounding healthy cells), it would be 28 treatments, and all in all the only thing that was a little iffy was that there was no long term research available. This type of radiation seemed to be the best choice for me, so I agreed.

Tomotherapy machine:

Again I had to have more MRI's done and I had to be fitted for a mask. Because the radiation would enter my body through my forehead it was EXTREMELY important that I did not move while my treatments were done so that my vision and hearing would have less chance of being damaged. . The way they make the mask is you lay on a table, and they position your head how it would be during your treatment. They put a flat piece of mesh into hot water and allow it to get fairly hot. They then take the piece of mesh (now almost melted) and lay it on your face. They then form it to fit your nose, eyes and mouth. I am not gonna lie it was a little hot!! After the tech makes sure that it is formed to your face you have to lie still for 15 minutes while the mask hardens. I am not much for being able to lie still so it was difficult for me.... luckily it wasn't for very long!

Next I met with different doctors. The first doctor told us about some of the possible side effects of radiation. They included red spots where the radiation enters the body, sensitive/dry skin, fatigue, possibility of nausea, decreased appetite and the possibility of losing my hair. LOSING MY HAIR!?!?! As soon as the doctor told me this I started to tear up. I know it probably sounds stupid but I didn't want to lose my hair... hadn't I already been through enough? I was getting married in 5 months..... I wanted to be a beautiful bride, not a hideous bald bride.... But the doctor assured me that it was only a possibility and that as long as I only used baby shampoo when I needed to wash my hair, didn't brush my hair a whole lot, I might not loose my hair. I was still worried but felt better. The next doctor I met with said that I would NOT lose my hair... now I was confused. I told him what the first doctor had told me and he said that he didn't think I would lose my hair. Again I started to feel better... don't get me wrong I was scared to have the radiation treatment done.... I didn't know what to expect, I didn't know if it would hurt, I didn't ask a lot of questions though, I guess I was overwhelmed at being in the Cancer Treatment Center. There was ALOT of information being thrown my way and I couldn't wrap my head around it all. So then I had to meet with one more doctor. This doctor explain how to take care of myself during my treatments. I got pamphlets on how to eat properly, exercise, what to watch for that was not a normal side effect, what soaps, shampoos, lotions to use. It was alot of information. Then she told me that I would most definitely loose my hair. That was my breaking point... I started to cry. I had put on my "brave face" up until this point but being told I was for surely going to lose my hair was too much for me to handle. I am pretty sure that this was the only time I actually broke down and was bawling. Looking back now I realize it was silly, but at the time I thought losing my hair would be the worst thing that could happen.

My treatments would start in 2 weeks.... on May 8th 2007. Now I was kind of embarrassed, I had bawled like a baby over the fact that I might lose my hair. While my mom and I were walking through the halls there were so many people (I assume battleing with different types of cancer) that were so ill, most of them were wearing bandanas and were hooked up to IV poles. I realized that it could be worse for me, at least I didn't have cancer. I was still worried though, I was actually scared... I didn't want to do this treatment. As we walked out to the vehicle I realized that most of the people in the Cross Cancer Center were quite a bit older than me. Actually I never seen anyone that was my age. I felt very out of place.

Sometimes I think....

In case it is hard for you to read it says:

"You have never lived my life... so don't pretend you know how I feel... you've never walked in my shoes... so don't pretend you know where I have been... you've never taken any of my breaths... so don't pretend you know how I feel..."

Pushing on...

So in a matter of weeks I had undergone another surgery (I forgot to mention that after BOTH my surgeries I lost my taste and smell for approx. 2 weeks), lost my grandma, and because I wasn't taking proper care of myself (by taking my medication and keeping my stress levels low) I developed SEVERE kidney pains. Once we were able to return home I decided that if I was ever going to get better I needed to start taking better care of myself. I tried to make sure to take my pills 3 times a day, eat healthier and managed to keep my stress levels as low as I possibly could. I had to go back to the doctor in January for another check up. The doctors wanted a follow up appointment approx. 3 months following my surgery to examine my MRI's and blood work. So my mom and I headed back to Edmonton for my checkup.

After sitting in my doctors office for what seemed like forever (but it was probably only about an hour) they FINALLY called my name. We went into the little room, and sat and waited for my doctors. I was a little anxious, I just wanted to get the appointment over with. My neurosurgeon always had a way of making feel stupid. He likes to talk in big medical terms and when I ask him questions he makes me feel like an idiot because I didn't know something. So instead of feeling embarrassed I just sit quietly and let them do all the talking. I wait to ask my questions until my neurosurgeon has left the room and it is just my endocrinologist. She is a wonderful lady and never makes me feel stupid for asking questions!

After probably 15 minutes of waiting both my doctors walked in. I always have an MRI done the day before my appointment, and they were carrying the photos in. We did the "Hello" and "How are you" thing, then they put the MRI's up on the lighted screen. They both got a really concerned look on their faces. My heart dropped like a rock. I knew something wasn't good. My Neurosurgeon never got a concerned look, he was always so confident in his work (kind of an arrogant man). I don't remember exactly what was said next but I do remember them telling me that the tumor had grown quite significantly since my surgery. My eyes teared up again as I blinked back the tears.

Honestly at this point I was tired.... tired of the poking, the prodding, the 7 hour drives to a doctors appointment, I was just tired. I wanted to just give up on the idea of ever being "cured". The doctors were so sure I would be cured after my first surgery, that didn't happen. Then when I was going for my second surgery my Neurosurgeon was absolutely sure that he was going to be able to get the tumor and I would be cured... and now he was standing there telling me it was growing back again?! I was angry, tired, and scared.... they already had told me that another surgery was not an option. There was too much scar tissue to be able to safely go in and remove the tumor. Also my tumor was too close to my optic nerves and if they kept trying to take more of the tumor there was a great possibility that I would have woke up blind. So now they were telling me that the tumor was growing back rapidly and surgery wasn't an option.... what now?