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?

Tragedy....

In November I was still trudging along... trying to get back to normal but still trying to keep my stress levels down. It was very important to keep my cortisol levels down (your cortisol levels rise when you are stressed). Everything was going along just fine, I was taking my medication, starting to feel better with a little bit more energy. One night I had gone to bed (I was finally starting to be able to sleep for more than 2 hours at a time) when the phone rang around midnight. I was still half asleep but I heard the phone ring. Then all of the sudden I heard my mom start screaming and crying. Before my brain was even functioning I was running down the stairs... I didn't know what was going on but I knew it wasn't good.

When I got downstairs my mom was hysterical.... she managed to tell us that my Grandma had been killed in a car accident. I couldn't even imagine how awful my mom felt because I know how horrible I felt. My heart was broke, a huge part of our lives had been taken away from us. My Grandma was our rock. She was not your typical "grandma". She was a busy lady, a worker. She had 20 or so horses who she worked hard to care for,she worked 3 jobs just so she could afford to have her horses and compete in shows (which she loved to do). She was an amazing lady who helped me (and my mom) through a lot, especially when I got sick. Now she was taken from us, all because some retard was speeding and hit her. The night we found out is kind of a blur.... not a time that I want to remember...

The next day my Mom and Dad drove down to my Grandma's to start taking care of things. Me and my sisters stayed behind to make sure that everything was in order for us to be able to leave. We had to find someone to watch our animals and make sure that there was enough hay for the horses etc. (Lucky for us my mom has some great friends who stepped up to help). Needless to say my stress levels at this point were through the roof... I started to feel sick but never really thought a lot about it at the time. Justin (my boyfriend) was kind enough to arrange for my me and my two sisters and my nephew to fly down to meet my parents so that we could get there sooner to be with the rest of our family.

As I was sitting on the plane a thought ran through my head.... it had only been almost 3 weeks since my surgery and I probably wasn't "allowed" to fly, I mean I wasn't even allowed to blow my nose, sneeze or drink through a straw. A little late to think of that, seeings how we were already on the runway ready to take off. So as the plane was taking off I felt like my head was going to explode... so much pressure (almost more than I was able to take). Once we were up in the air I felt a little better but I was panicking... hoping that nothing bad was going to happen. As we landed I went through the same horrible feeling as I had when we took off. I honestly thought my head was going to explode off my body. Even once we had landed I felt horrible... my balance was off and I was walking like a drunk. But my sisters helped me to get to where my Dad was waiting for us. At this point I didn't really care, I needed to be with my family and I was willing to take that risk.

The next couple days I felt like crap. Too much stress for me to handle. It was so sad to be around all the familiar things that reminded me of my Grandma... her horses, her dogs, everything in her house... everything just screamed at me. I started to get pains in my side. The pain continued to get worse and worse for the next couple days. It got so bad that I was lying downstairs on the floor curled up in a ball... I didn't want to say anything because everyone was trying to get things ready for the funeral... I knew that if I told them that I was sick they would be worried about me and everyone had enough on their minds. The pain never went away... it only got worse. I actually even started to throw up because it was so painful. I think it was the third day when my mom realized how much pain I was actually in. She told me that she was taking me to the hospital. I tried to argue, but I knew that there was no point.

We drove into town and I went to the emergency room. It turns out that my kidneys were acting up and I ended up getting kidney stones. I had to have a morphine drip and then they gave me some pills to take with me just in case the pain came back. They told me the reason I got these pains was because my levels were way off because I was so upset about what had happened to my Grandma. It caused my cortisol to skyrocket.

The next couple days were hard... I was high on those stupid pills and trying to help make arrangements for the funeral... not sure if I was much help but I wanted to try. The day of the funeral I felt sick all day, all I wanted to do was sleep... my levels by this time were WAY off and there was nothing I could do but tough it out. I couldn't just tell myself not to be upset... I mean I lost a huge part of my life and I didn't want to let her go. It also was hard for me to see my family (especially my mom) in so much pain. My Grandma was very important to all of us, and for her to just get ripped out of our lives was devastating.

I started to calm down a bit afterwards and knew that my Grandma would want me to get better. I knew I had to keep going and eliminate the stress as best as possible... it has been hard, and I will never forget her. I know she is always with me and that has helped me through alot.

Life after sugery # 2

So after my surgery my parents made the drive home... it took them like 14 hours.... the roads were TERRIBLE!! Luckily for me Justin and I stayed in Edmonton... I was supposed to stay near Edmonton for a couple days just to make sure everything was healing properly. We were able to stay at my Grandmas and it was nice to be around her. She was such a busy lady, she owned a ranch and had alot of horses. She was constantly doing something... whether it was cleaning the barn, riding, moving hay etc.... not your typical "grandma". She took special care of me... she wouldn't even let me do the dishes... "You just need to rest" she would say... I feel very special to have such great family support in my life. I remember the last night that we stayed with her she had a banquet to go to. A few weeks prior to my visit she had been in a bad wreck with one of the horses and she was severely hurt. She was still in alot of pain but she wanted to go to this banquet. I remember her not even being able to sleep lying down so she was sleeping on the couch... but she "cowgirled up" and got dressed to go to the banquet. I remember thinking to myself how stunning she looked. Such a beautiful woman.....

Justin and I had tickets to go see the "Dixie Chicks" in concert so after staying with my Grandma for a couple days we went and stayed in the city to go watch the concert. It was not a very smart move on my part... I mean the concert was great but all the loud music, bass, and cheering was a little bit hard on my head. I got an extremely bad migraine that lasted for a couple days.... despite the tylenol 3's that I had been taking. But it was fun....

Once we returned home I was not allowed to go back to work. A major part of managing my disease is to keep the stress out of my life. When your stress levels increase so does your cortisol. I had to try and keep the stress down so that my cortisol levels would stay lower... I also had to take ketaconozol. The ketaconazol is to lower my cortisol levels. They have adjusted my dose so many times that I cannot remember exactly how much I was taking after my 2nd surgery.... I think it was 200mg, three times a day. It is important that I take my medication, if I don't my levels get all messed up. It was difficult for me at first to remember to take my pills... but if I forgot I noticed I didn't feel well. I would get tired, my hands would get shaky, and I would be very easily irritated and I would have terrible mood swings.

After being at home for a short bit I started to get bored. I mean I was not allowed to go back to work yet, all my friends and family were working... I started to feel a bit depressed. My mom didn't want me to get into a slump so her and my Dad bought me a new horse. I was now the proud owner of High Sweet Lady... otherwise known as "Luci". Luci was a mare that was sired by my Grandmas World Champion Stallion, High Limit. My Grandma had sold her to a lady and we bought her back after things weren't working out. I didn't know at the time what an important role in my recovery that this mare would have. Again I couldn't ride for quit a bit because my balance was not very good. Also I found out that my lil' Miss Luci had some issues of her own that we were going to have to overcome.

What is the Pituitary Gland?

The pituitary gland is known as the "master gland". It is located at the base of the brain between the optic nerves. The pituitary gland produces chemicals that travel through the bloodstream, also known as hormones. The hormone functions that the pituitary gland is in charge of include thyroid activity, temperature, testosterone production in men, ovulation and estrogen in women, growth during childhood, and urine production. In additon to controlling these functions the pituitary gland also acts as our bodies "thermostat". Meaning that it regulates all other glands that are responsible for responsible for hormone secretion inlcuding the adrenal glands.

The pituitary gland functions as two seperate compartments; the anterior portion and the posterior gland. The anterior gland actually is made of separate collection of individual cells that act as functional units that produce a specific regulatory hormone messenger or factor. These factors are secreted in response to the outside environment and the internal bodily responses to this environment. These pituitary factors then travel through a rich blood work network into the blood stream and eventually reach their specific target gland. They then stimulate the target gland to produce the appropriate type and amount of hormone so the body can respond to the environment correctly. An example of this would be is when a person see a dangerous animal such as a bear. The pituitary gland receives input from the hypothalamus which is the master control system within the deep recesses of the brain. This message involves catecholomines that are generated in response to the frightening stimulus. The hypothalamus then stimulates the pituitary gland to secrete important factors, for example cortisol, that make their way into the blood stream and eventually to the adrenal glands. This gland finally secretes catecholomines that generate flight response to the fright.

*** The pituitary gland is a very busy gland, it would be almost impossible for me to write out everything that it does, or that it helps control. I hope that this at least helps give an idea of how important the pituitary gland is to a person body***

Transsphenoidal Adenomectomy- This is the name of the surgeries I had

I thought that I would take a minute to explain what kind of surgery that is required when you have a pituitary tumor. The surgery is called Transsphenoidal adenomectomy. This surgery is a very delicate procedure and should only be done by a specialist.

The termd "transsphenoidal" means through the spenoid. Sphenoid is part of the sinus. This is how the surgeon gains access to the pituitary gland which is located at the base of the brain.

Risks:

There are obviously risks involved with this surgery (as with all surgeries). The most common risks include infection of the lining of the brain (which is called meningitis), heavy bleeding from the incision, and reaction to the anesthetic used during the surgery. Other risks that are less common include leakage of the cerebrospinal fluid from the brain (which is what happened to me during my first surgery), problems with fluid balance and the syndrome of inappropriate secretion of antidiuretic hormone (SIADH). Although these complications are serious they are all treatable.

Before Surgery:

Before a person has this surgery the patient meets with the surgeon and an anesthesiologist to discuss the surgery, possible complications and answer any questions that the patient may have. Once you have met with them and you fully understand the surgery and possible complications the patient is then asked to sign a consent form. This is to state that the patient fully understand the process. Also they should tell you to practice breathing through your mouth because after the surgery your nostrils will temporarily be blocked and you will have to be comfortable breathing through your mouth. The night before the surgery you are not allowed to eat or drink anything.

What Happens During Surgery:

During this surgery you will be placed under a general anesthetic. This will keep you asleep during the operation. An endotracheal tube may be put into your mouth or nose. It goes down into your windpipe to help keep your airway open and help you breathe. It may be hooked to a ventilator (breathing machine), and you may get extra oxygen through your ET tube. You will not be able to talk while the ET tube is in place. Your head is also placed in a headrest to ensure that your head is kept still during the surgery. The surgeon uses a special microscope and very fine instruments to approach the pituitary gland through a nostril or an opening made below the upper lip (in my case both times it was through my nose). The surgeon has to get through the nose and the sphenoid bone (a butterfly-shaped bone at the base of the skull). This allows the surgeon access to the pituitary gland. The tissue covering the pituitary gland will be cut open. The surgeon uses special instruments to remove the tumor. Once the tumor is removed the bottom of the pituitary chamber will be replaced with bone that was removed earlier during this procedure. The incicion will be closed, and the nostrils will be packed with gauze or a special nasal sponge. Sometimes a small piece of fat will be removed from another part of your body (for me the first time it was taken from my leg, and the second time it was taken from my abdomen) and packed into the pituitary chamber. This is done to help prevent brain fluid from leaking.

After Surgery:

Immediately after the surgery the patient is taken to an area where they will monitor you until you are ready to be taken to your patient care unit. Normally you would stay in patient care for 2-5 days, as long as there are no complications.

If there are not complications your bed will be positioned and raised slightly (30 degrees). This is done to promote blood flow from your head and to decrease pressure in your head. If you have to have a spinal drain (like after my first surgery) you will have to lie completely flat. Normally your nose will be packed with nasal packing for 1-3 days. You will have to breathe out of your mouth during this time. The nasal packing is uncomfortable and may cause headaches. Sometimes the packing is needed to stay in longer. When the packing is removed there will be some bleeding and drainage from your nose. The discharge should subside within a few days. You will not be able to blow your nose, drink from a straw or sneeze for at least 6 weeks following your surgery.

Lumbar Drain:

If you have to have a lumbar drain inserted following your surgery it is inserted into your lower back. The catheter is placed into your spinal canal. The lumbar drain is used to allow fluid to flow away from the incision so that it can heal. Usually the drain is left in for 3-5 days following surgery. You have to lie flat on your back while the drain is in your spine, however you are allowed to turn onto your side.

Activity after surgery:

You must be careful for a while after your surgery about what you do for activity. It is especially important not to cough, sneeze, bend over, blow (or pick) your nose, or strain for at least a month. This will allow everything to heal properly, and prevent future complications.

It is important to remember that every individual is different so recovery make take longer or shorter. A big part in recovery is thinking positively. A positive outlook speeds up recovery time!

recovery time again.....

The next thing I remember was being in post surgery care. It is where they monitor you for a certain amount of time and make sure that you are doing okay after your surgery before they send you to your room. I was just starting to wake up from the anesthetic and I remember the nurse talking to me. "Stacy, you have to breathe..." she said that to me a couple times. I remember feeling scared because I had to conciously tell myself to take a breath; something that was supposed to be natural was almost like work. I remember feeling so tired. I remember thinking to myself "Take a deep breath" so I did then I dozed off.....



When I woke up again I was in my room in the Neuro ICU. I was very groggy from all the painkillers and anesthetic I had been given. I don't remember much but I remember seeing my Mom. I don't remember if my Dad, Justin and Jaimie were in the room. I remember seeing my Grandma's brown jacket and I remember thinking that everything was okay because my Grandma was there. I dozed off again....



When the anesthetic had finally totally worn off I woke up. I felt much better this time than I did after my first surgery. I had some pressure on my sinuses, my head was sore from the clamps used during surgery, and I was slightly achy all over. Not near as much pain as the first time. I also had a cut on my stomach from where they had taken tissue to block the hole in my head from where they had to go in to access the area of the tumor. I was hooked up to 2 IV poles. But there was great news.... NO SPINAL DRAIN! There was no excruciating pain in my back. When the nurses told me that I had a cut across my stomach where they had taken some tissue out I asked them "Couldn't you have taken a whole lot more?"... apparently it sounded funnier in my head because the nurse did not think it was funny.... Could of been the painkillers I was on but I thought it was hilarious!



Throughout my stay in the hospital my Mom stayed with me pretty much the whole time. However I do remember one time when she was late getting to the hospital in the morning... I don't know why but I was so upset with her and I told her so... maybe not in such a nice way (I don't remember being mad). My mom later explained that the painkillers I was on mad me have horrible mood swings.... I guess I went from being happy to angry in seconds...... my Mom tended to get the brunt of most of my mood swings..... it wasn't like I meant to it just happened that way! My Dad, Justin and Jaimie stayed with me alot too. Jaimie and I played cards lots... but I don't really remember it.

I remember there was a lady next to me in the room, I never seen her because we kept the curtains closed, but I heard them talking sometimes. It was actually a very sad thing... she was a young mother of 2 small children. She was riding in a car and had been T-boned by another vehicle which the driver was drunk and had stolen the vehicle he crashed into this lady's car. Now this poor woman was paralyzed from the waist down and the doctors told her she would most likely never regain her feeling in her body. I couldn't even imagine being told that I would never walk again... especially with having 2 small children. One morning her children were visiting her and I could hear her little boy. He said to his mom "Mommy why can't you get up to play with me?" I felt like I was going to cry... this poor little boy didn't understand why his mom was unable to play with him. It was very sad. It made me realize that again.... it could be MUCH MUCH worse.

The recovery from this surgery was similar. I still had swelling around my nose, IV poles attached to both arms, and I had nose plugs in. I must have been on more pain killers this time when they decided to remove them. I remember it being uncomfortable, but not as painful (although I thought Justin was going to pass out when they took them out!) I think it also had something to do with the fact they were not left in as long, and I also used the mask more to keep my nose moist. I felt much better after this surgery than I did after the first one. I was in way less pain (not that I wasn't in pain), and I was able sit up which was great! I think I was only in the hospital for 4 or 5 days and I was allowed to leave the hospital.

As I was leaving I ran into Nikki (the nurse that had taken such good care of me during my first surgery). She smiled and said "I thought I recognized your name on the list!". She was now one of the head nurses in the Neuro ICU and had just started her weeks on the day I was being released. I remember her saying how strange it was to see me again because most of the time in that department you only see the patients once in a lifetime... not twice in a little more than a year. We only talked for a moment but I was happy that she remembered me... it made me feel special. As I was walking out she laughed and said "No offence but I don't want to ever have to see you again!" I laughed and said "Don't worry I don't want to have to see you again either!" and with that I walked downstairs and out to the vehicle.... freedom at last...... again!

Pre Surgery # 2

So I was wheeled into the "waiting area" along side about 3 other people. As I stared at the nurses going back and forth I was thinking about how this surgery was going to go. I was scared about what could happen... I just remembered the horrible pain that I had in my spine with the drain. Then all of the sudden the guy in the bed next to me started talking to me. It caught me by surprise because non of the patients were talking... just waiting..... We started chatting and he asked what I was "in" for. I told him that I was having a tumour removed from the bottom of my brain... and briefly explained to him that I have Cushing's Disease. I remember the guy was in shock... he asked me how old I was and I told him that I had just turned 21. He said that I was too young to have to go through all that... I laughed and said "This is round 2"..... he commented on how he thought that I must be a strong person to be able to go through such an operation... not once but twice! I just told him that sometimes you just don't have a choice and you deal with it the best way possible..... It was then that I asked him why he was having surgery. He told me that he had frost bit his foot so bad that they had to do surgery to see if they could repair it. If they couldn't repair it he may wake up without his foot. I honestly didn't know what to say... here this guy was feeling bad for me and he was not even sure if he was still going to have his foot by the end of the day. I quietly told him that I was sorry, and I wished him luck. I realized then that it could be MUCH worse for me.....



Finally they wheeled me into the operating room. Again same bright lights, lots of doctors/nurses, and it was cold. The only thing that was different was Ryan wasn't there. I was scared to have the anesthetic again (if you remember it made me feel like I was choking). The nurse came over and started putting the heart monitors on my chest. She asked me if I was okay, I simply said "Scared." She started rubbing my hand to help me relax. This time they didn't strap me down, or put the mask over my face.... they just gave me a needle through my IV..... and I fell asleep. This was much better for me, it wasn't scary... I didn't feel like I was choking to death, then the lights started to seem a little dimmer and the next thing I knew I was sleeping.

Preparing for # 2

I remember sitting on the little bed (you know the one with the nice paper over it) blinking so I could fight back the tears. I didn't want to cry in front of my Dad.; not sure why but I just felt like I had to hold it in.... I felt so sure that the doctors were going to tell me that everything was looking good... I was not expecting this news. I was totally shocked. I did not want to go through another surgery. The last one was so painful and scary, I did not want to do it again. But I did not want everyone to know how scared I was, so I put on what I like to call "the brave face".

After speaking with the doctors for a few minutes they told us that they would schedule the surgery as soon as they could. They told us that it needed to be done ASAP because the tumour was coming back quickly. They could not believe how much it had grown in such a short amount of time.

Walking out of the hospital my mom was asking me all sorts of questions like "How do you feel about this?", "Are you okay?" etc. etc. I just said I am fine and kept walking. I thought that if I didn't have to talk about it I wouldn't cry. The truth was that I was scared and frustrated. I was scared to have to go through all that pain again, and frustrated because after my first surgery they told me they were sure I would be cured. I felt like I had been lied to and that the doctors had got my hopes up and now they were splattered all over the floor. All I wanted was to be NORMAL.

Once we returned home I tried to go on as routinely as possible. I went back to work and told them that eventually I would be going for surgery and would need some time off. Other than that I tried to avoid talking about. It was almost as if I thought if I didn't talk about it the doctors would phone me and tell me they had made a mistake and I didn't need to have surgery again. I kept riding my beautiful Tia, spent time with my dog Harley that Mom had got me for my birthday. When people would ask me about my surgery I just slapped on "the brave face" and said that it wasn't really a big deal, even though on the inside I was freaking out! My boyfriend had stuck through it all with me and was fairly supportive considering he had no idea what I was going through inside. My family (including my Aunts, Uncles, cousins etc) were all really supportive which helped alot. It is great when you have such a great support system.

One Monday while I was on my lunch break at work I got a phone call... it was the hospital. The lady told me that they had a cancellation and I needed to be in Edmonton the next morning at 7am for presurgery admission. Completely blown away... I like "Okay." So here I am on Monday afternoon... having to be in Edmonton the next morning..... hmmm..... how on Earth am I gonna pull this off?

So I called my mom at work and told her that we needed to leave for Edmonton that day. I had to go back to my work and let them know what was going on and to quickly train the new guy to do my job. I was scrambling at work to get everything done that needed to be done, write out step by step instructions for the new guy so that he could do the month end reports etc etc. After I had done that I rushed home and packed my bag. My mom was getting her things together and we jumped in the truck and headed for Edmonton. My Dad, boyfriend and little sister were going to come down the next day. We didn't get out of town until about 4 pm and we drove to my Grandma's in Drayton Valley that night. We didn't get there until about midnight.

The next morning we drove into the city and I got my presurgery tests and paperwork done. I felt overwhelmed.... it all happened so fast. My Mom wanted to calm me down so they took me out for supper to my favourite restaurant.... the Olive Garden! We stuffed our faces (well at least I did!) and we ended up getting a hotel in the city because my surgery was scheduled for 7am which menat I had to be at the hospital by 5 am. My mom and I relaxed in our rooms until my Dad, sister and my boyfriend arrived. Everyone was tired from the drive... and I can't speak for everyone else but I was NERVOUS! We ate some food and I had a nice long bath. We all went to bed fairly early because we knew the next day was going to be a long one!

The morning of my surgery we got up at 4 am... I had to be at the hospital by 5 am. The hospital was so quite.... not the usual busy atmosphere that it normally was throughout the day. We arrived in the pre surgery admission. It was the same as the last time. The nurses came in and I got to change into those beautiful hospital gowns. They inserted the IV needle into my arm.... brought me a warm blanket and I sat with Mr Cuddles and we waited (my Mom, Dad, Justin, and my sister Jaimie).

***MR CUDDLES***
In my post about my first surgery I forgot to mention Mr. Cuddles. Mr. Cuddles was a VERY important part of my surgery. While I was in the hospital my Justin (my boyfriend) had given me a stuffed Monkey that I named Mr Cuddles (don't ask why!). I held onto Mr Cuddles when I was hurting, scared and when I felt alone. It is very special to me and always will be! The nurses even gave him a hospital wrist band like mine! I can't believe I forgot to mention it....

It was now time for me to climb onto the bed that I would be going into the operating room on. I could see the scared looks on everyones face... even my Dad. They allowed my family to walk with me to the surgery doors. I gave everyone a hug and kiss and told them that I loved them. Justin gave me a hug and started to tear up... he was trying hard not to because he knew I would cry if he did (and I did). It wasn't until then that I could see the amount of worry that everyone was holding inside. I didn't want to leave them...

After Surgery

Finally we were on our way HOME! I could not wait to get home and see my family again. I still looked pretty rough; I had bruises up both arms from the IV's, my skin was dry and red from having the patch on my face for so long, my face was still a little swollen and I had strings constantly hanging out of my nose (from the stitches inside my nose). I had to take 400mg of ketaconazol per day, and monitor my blood pressure too. Ketaconazole is a antifungal agent blocks the formation of steroid hormones such as cortisol. Ketaconazole is one of the most popular medications to treat Cushing's Disease. But I didn't care... just super happy to be going home.... and to be cured!
My mom and I had stopped at my sisters on our way home and I decided to stay at her house. Partly to see my sister and my nephew but partly because I had been talking to a guy that lived out by her and while I was in the hospital he told me that he had been telling his friends that I was his girlfriend. We were supposed to be going on a date.
When he came to pick me up for our "date" he had brought his cousin.... nice hey? Anyways we ended up going to the movie but the only problem was that because of the surgery and stuff I often got bloody noses without warning. I missed probably about half the movie because I just kept getting bloody noses. I thought "Great he probably thinks I am a freak!". But I found out that this guy liked me for me and he never treated me differently.
Every 3 months I had to drive to Edmonton for check ups. I was still getting migraines all the time so I had to take T3's quite often to dull the pain. The nose bleeds eventually died down and I wasn't getting them as often. I had to make sure that I didn't have any stress so I wasn't allowed to go back to school, and I also wasn't allowed to work. My life was sort of at a stand still.
My mom ended up giving me a horse named Tia. I spent alot of time working her. I wasn't able to ride for the first few months because my balance was pretty much shot and I had to work on getting it back before I could even think about riding. After a while I was able to ride but I could tell that my balance was sure not what it used to be. Having Tia was very theraputic for me. I bonded with her and I just felt like she truly understood me when know one else could. Don't get me wrong, my family was great about trying to understand what I had been through but no one had experienced it and it is truly frustrating trying to explain how you are feeling to everyone. I felt as if Tia was the only one who wasn't constantly asking me "Are you okay?" "How are you feeling?" etc etc. She didn't treat me differently and that's what I needed. I know it is hard for most of you to understand what I am talking about.... but she helped to me feel normal when everyone else treated me differently because I was sick.
I had to get my blood checked every couple of weeks so they could monitor my ACTH levels and cortisol. I also had to do 24 hour urine tests every 2 weeks so they could track my cortisol in a 24 hour period.
I was starting to become very optimistic that I had been cured. I was slowly starting to get some of my energy back and was able to sleep through the night. I didn't seem to be bruising as easily and was starting to heal much faster. In November of 2005 I was FINALLY able to go back to work. It felt good to start working again and not feeling useless. I still had to make sure that I didn't have a lot of stress so I started working part time as a parts delivery person. Things were going great.
Unfortunately my Grandma Irma passed away from cancer shortly after. I felt as if I had lost a HUGE part of my life. My Grandma was one of the only people who didn't treat me differently because I was sick... she understood having to go through all the hospital visits and stuff because she had been sick for quite a while too. She was one of the only people that I felt comfortable talking to about how I was feeling, and when I was scared or upset because of my disease. I felt like I would have no one who understood as well as she had. I miss her VERY much and I remember all the special things she did for me, and all the amazing things she taught me. Because of all the stress from my Grandma passing away I started feeling crappy again. I started not being able to sleep during the night again, the bruising increased and my mood swings started to come back. This caused trouble in my relationship not only with my boyfriend but with my friends and family too. I always was tired and I couldn't explain why I always felt terrible.
I had to go back for another checkup in Edmonton in the fall. Hoping that my levels had straightened out I was feeling pretty optimistic... who knows maybe they would be able to lower my dose of ketaconozole.
When I got to Edmonton I had to have more MRI's done (pretty standard when doctors are looking to see if your tumor has grown/shrunk) and I had to have the IV dye (which makes it easier to see a tumor, the tumor attracts the dye making it easier to see). It felt really neat actually when they inserted the dye. I could actually feel the dye going up my arm into my neck and then into my head. It was a cold feeling and it gave me shivers!
The next day I had my appointment in the Pituitary clinic with my Neurosurgeon and Endocrine specialist. My mom and Dad were with me. I was nervous (I always get nervous in doctors office's). When they called my name and took me into the room my Mom, Dad and I sat down an waited for the doctor. I was really hoping that the doctors would have some good news. When the doctors came in they told us that they had looked at my MRI's and they were concerned. My tumor was growing, and it was growing aggressively. I would have to have another surgery as soon as possible. My heart sunk.............