My hero

One more thing!! I am SUPER excited to be able to walk in the LIght the Night Walk being held in Calgary next Saturday to raise money and awareness about blood cancers. I had to take last year off because I was just coming out of the hospital from my second pituitary surgery. My dad is a two time survivor of non-hodgkins lymphoma so I do this walk to celebrate him and his strength. He is a true inspiration to me. I often thought, if dad can go through that extensive treatment twice and kick cancer's ass I can sure as hell beat Cushings! Its a walk in the park compared to what he and many others have been through. Not that I am undermining what people with Cushings go through, particularly because everyone's experience is so different - I just say this because it was absolute agony to watch my dad suffer. The day he asked my mom and I to shave his head for him absolutely broke my heart. I'm tearing up just thinking about it! I would take another brain surgery any day over him doing chemo again. Anyway, here is the link to my fundraising page:

http://my.e2rm.com/personalPage.aspx?registrationID=1632831&langPref=en-CA

Hi Ho Hi Ho It's Back to Work I Go!!!

Well it is over halfway through September and I am LOVING being back at work still!! I got the all clear to return from my endcrinologist and returned to work officially on August 29. It was a crazy set up moving into a new classroom and setting up but the long hours and working over the long weekend was totally worth it. I feel so at home in my classroom, it has such a calm and relaxed feel which makes work that much more enjoyable I think. I didn't think it would all get done but I'm in and I'm organized and things are going smoothly. I have a fantastic group of kids this year, so cute. I really missed working with kids everyday. Feeling so happy to be back just reinforces that teaching is what I was meant to do. Yay! I also have an incredible team of coworkers this year, we have been working so well together, things just seem to be flowing so naturally I couldn't be happier. I did forget what it was like to have so many things on the to do list though! And getting up early is still a challenge...boo so not a morning person haha but once I get going its all good haha. I haven't been any more tired than the rest of the teachers at school either which just supports the thought that I'm cured :) I honestly feel better now than I did before I went off work in June 2011. 

I am a member of a Cushings support group on Facebook and someone posted in there asking if anyone had recovered enough to return to work full time and did they have to retrain at another profession. I was the only one who responded that yes they had and things were fantastic. It was really scary to read that some people's memories and cognition had been so affected by Cushings that they couldn't function properly in their field any more. Others just didn't have the physical stamina to continue. I hope that my story of success gives sufferers of Cushings hope that it is possible to get better! It makes me so thankful that my recovery has been so positive and I just really really REALLY hope that it does not recur. I would be devastated. BUT I will not think that way, I will just be thankful that things are going so well and hope they continue!! I love feeling this sense of normal again!!

I went for some bloodwork yesterday morning to see how my cortisol levels are doing. I have been completely off ALL my medication for 3 weeks now so we have to see if my body is ok without them. Here's hoping I don't have to take that cortef anymore! I had my blood pressure checked last week as well and it was optimal. It is SUCH a relief to see numbers like that :) 

My weightloss journey is going well also! I am offically down 21.6lbs on weightwatchers since I joined it online June 11 and down 25.6lbs according to myfitnesspal since Janine and I started tracking our weight May 28. I have probably lost at least 30 from my heaviest at my last surgery in March though. I feel SO much better because of it as well. My clothes are starting to feel looser...some need to be thrown away YAY, and I think its contributing to me having more energy as well. It honestly isn't even that hard to keep track of what I eat all the time either, though I do admit I miss the days when I could just eat anything haha. I can do so many things that I couldn't before - longer walks, I helped move furniture, went to a pole dancing class for a friend's bachelorette, haha - can walk up stairs! Recovery is such a good feeling. I think things will only continue to get better as well.

I'm considering going to a naturopath though, that being said! I'm feeling good but I bet I could feel better and have always been curious about natural medicince. Also I think now that my hormones are starting to change now the tumour on my gland is gone its affecting my skin. Breaking out SO bad on my chin it is a bit embarrassing but I don't want to mess with my hormones too much by taking a birth control pill or anything. Something to consider anyway. I'll take the embarrassing acne over Cushings any day though. I still feel better about going out in public now than I did before thats for sure!! Ugh, those feelings of self consciousness were debilitating no matter how hard I tried not to let them be. Every time I went out I thought people were staring at me and judging me. I would often have mini breakdowns before going out anywhere and would avoid social situations at times. I know it was silly and my friends didn't care what I looked like but it was hard. All that is behind me now though. My body still isn't what I wish it to be but we're making progress and that in itself makes me feel good enough to go out in public not as concerned about what people might be thinking.

Anyway that is my update for now! Stay tuned...I'm very bad at keeping up with this (esp now I'm back to work!) but I will post eventually :) 

Feeling the change!

Well its been awhile since my last post, it's been a busy last month!! Once I learned I'd be off work for the remainder of the school year I decided I had better take advantage of the extra time off while I had it and used some long earned air miles to fly home to Marathon for a month. I thought a change of scenery and some time with family and friends were in order. Best decision ever,it was so good to go home! I went out walking pretty much every day and had some nice relax time...and of course wok with chow haha. I just can't find another chinese restaurant that compares!! Anyway, I think the fresh air and walking has really started to make a difference because when I got back to Calgary at the end of May I felt so much better and actually noticed a difference in how I feel on a daily basis. No longer did I have to lay down for ten minutes after taking a shower and I didn't feel as sluggish as I did before I went home. I got to stop taking one of my heart medications as well which was so good!!


I was back in Calgary a week...and what a week! Janine came out to see me two days after I got back and we were sooo busy. We did a few of the touristy things of course...went to the mountains b/c you can't come to Calgary and not see the Rockies close up! We went shopping too and Janine really helped me find some clothes that were flattering and comfortable for my body the way it is now. I insisted I shouldn't spend money on clothes just yet b/c I'm hoping to lose a lot of weight, but she talked sense into me. You have to feel good about yourself as you are now and worry about new clothes later. What a great friend :) She was right, I am feeling so much better about myself just from those couple articles of clothing. I also convinced her to get a pair of Toms hahaha - she made fun of me when I got mine but she's converted now!! We went to our friend Marnie's wedding on the Friday and had a lot of fun. It was a great visit - so great it didn't have to end! I jumped on a plane with her and headed back to Ontario with her for a few weeks.


And that pretty much brings us up to date! I'm still at Janine's having a great time with her, Roger and their baby Gabrielle. Pretty sure she learned how to say Sarah yesterday hahaha. It sounded like it anyway so I'll take it :) Its hard to believe I've been here two weeks, time sure flies when you're having fun!! I've had a chance to see friends from high school and university that I haven't seen in ages which is always great. The only thing about living so far away is I hardly ever get to visit friends...its nice that we can always pick up where we left off though. 


Janine and I have also started weight watchers together. I'm going to try and include my progress on that in my blog just to share my experience with fellow people recovering from Cushing's as well as anyone else who's trying to lose weight! So far its been really positive. I have been here two weeks and am down 4 pounds!! It helps that Janine is doing it alongside me and we eat every meal together of course - what will I do when I leave her?? We've agreed to hold each other accountable. I haven't actually joined it officially yet either so I'm going to look into joining online. I also downloaded an app to my phone called "my fitness pal" which is super cool - I'd highly recommend it. You can enter all the food you eat in a day, the exercise you do, how much water you drink as well as track your weight and measurements. At the end of each day you complete your diary entry and it tells you how much you will weigh in 5 weeks if every day was like that day. You enter your initial weight and goal weight at the beginning and then go from there. The really neat part is you can scan barcodes on food and it can find all the nutritional info! You can also search a lot of restaurant foods which is handy. 


Losing weight is making me feel much better, as is getting more regular rest and exercise. I'm slowly but surely getting healthier I can notice a difference which makes me SO happy. I have more energy for sure. I still have off days but far fewer than before. Last Sunday I felt absolutely terrible and had to miss out on breakfast out with friends for a nap instead but I think my blood pressure was just super low. I went out later in the day to check it and it was very low and my heart rate was only about 50 which isn't good. I emailed my doctor and she took me off my other heart medication and things have been much better. Just indicates that that pituitary adenoma is really gone!! Its amazing what a tiny thing like that can do to your body...I finally feel like I'm starting to get my life back. I was so happy to come off the pills and after monitoring my blood pressure and heart rate for a week now I think I'll be ok to stay off the meds for good :) annnd...this may be an overshare haha but if you are suffering from cushings too I want you to know everything...i got my period back this week!! I never thought I'd be happy to get that but man oh man I was over the moon hahaha I feel like a woman again :) 


Thats it for now! Hopefully my next post will document some more positive changes :) Things are looking up! I'm looking forward to a fun summer and am so excited to get back to work in the fall. 

Still looking good!

I went to see my endocrinologist today and she opened with telling me it looks like I'm still cured! Followed by saying the bloodwork I went for didn't really tell them much since I'm taking hydrocortisone so that would skew the results...so I'm not really sure what to make of all that. She said that all the symptoms I've been experiencing though, the fatigue, dizziness, dry skin, nausea, etc - are all good things as they are a result of my body withdrawing from the high cortisol levels. Thats a good thing then! She also thinks I am looking thinner since the last time she saw me but I dunno...I've only lost about 8 pounds since the surgery and I thought I would've lost more by now. I guess I need to be patient and its not like Ive been actively trying to shed pounds so 8 isn't bad. Once I start getting more energy and able to get out walking and that things will pick up. I'm not totally convinced I'm cured but I think I just don't want to get my hopes up. i suppose time will tell! 

Third Time a Charm?

It has been 3 weeks since my surgery and I'm feeling optimistic!! I don't want to jinx it so I'm keeping my fingers crossed that it was a success and there will be no more surgeries for me :) I go for my first set of bloodwork post surgery next week and will see my endocrinologist as well...I sure hope she has good news for me. I didn't see her during my hospital stay but I saw a team of endocrinologists and they said my cortisol levels dropped like they wanted to see, they seemed very hopeful! In fact my levels were too low at one point so they have me taking cortef to raise the levels. I would rather have levels that are too low thats for sure. I don't mind taking a couple pills every day but I don't want to go through surgery again.


Not that the whole experience was that horrific, I can just think of more enjoyable things to do! Mom and I were up at 4am once again to make the trip to the hospital...at least we know the routine pretty well now and know where to go! My procedure wasn't until 9:30 but I had to be there by 5 to be admitted and have an MRI. There was an old man in the waiting area with us in admissions, I can't imagine having to go alone, I'd be so scared and sad. I actually knew the girl who did my MRI as well...I recognized her from when I helped Brandi move into her basement a few years ago! Small world. My surgeons had 3 surgeries that day and the guy ahead of me was getting an MRI at the same time and his did not sound as easy! I overheard something about numbing and spine and oh my goodness it was freaking me out and I felt a bit bad about being nervous about my own procedure! After my MRI I had to go and hang out in the pre surgery area for a couple hours with mom and try not to think about it too too much. I took some funny pictures of myself with the stickers they put on you for the MRI and sent those to a few people to distract myself haha. I looked like I had white lifesavers on my face haha. Then they wheeled me down to the OR where I hung out on my little bed with mom waiting to be taken away. Thats always the worst part, saying goodbye to mom because she gets teary then I get teary and I try not to get teary because I don't want her to know I'm scared...even though I know she knows. The doctors stopped by to say hello on their way in again and then the anaesthesiologist resident came and did her speech and then I got wheeled in - with one of the dr's patting my foot saying not to worry they'd take care of me. I hate being put out, its so weird, but at the same time I remember just laying there wanting to go to sleep so I wouldn't have to look around the room anymore. They had trouble getting my vein again, a trend that would continue throughout my hospital stay! They put IV's in both my feet too just because I'm such a hard start yuck...and because they like to do an MRI and the foot is the best place to put in the contrast dye during surgery apparently. Anyway I remember them struggling to get the IV's in my wrist and then I remember waking up in recovery. Apparently they wake you up in the OR but no one ever remembers, I certainly didn't! I just remember the resident waking me up and saying it went well and then the neurosurgeon standing by me saying he found a tumour and removed it successfully! I didn't catch the details but mom later told me when he called her to say I was in recovery that he went into the other side of the gland this time and found a tumour right away, sent it away to be tested and confirmed that was the cause. He said he got all of it so here's to hoping he's right!! I spent a long time in recovery but I didn't care as I wasn't too with it haha. Coming out of the anaesthesia is so yucky, I just remember feeling a bit ill and shaking so much until they gave me magic medicine in my drip. I had a few nurses tending to me who seemed really nice, one was sat by me pretty much the whole time. I remember other nurses coming over to check me over and saying they'd been sent to admire my toe nail polish haha!! Thanks for doing my nails mom :) Gotta primp for the hospital stays haha. Anyway they finally had a bed for me on the neuro ward at 430 and I got wheeled away to see my mom - busy floor I guess. My nurses were all so nice on that floor, very friendly and helpful. Apparently I wasn't too much trouble for them either which is good to know, they didn't want me to move rooms b/c I was an easy patient haha.
I had no visitors except for mom the first day which was just fine as I could barely keep my eyes open - poor mom must've been bored, but she sat by my bed until visiting hours were over reading her book. We gave dad a call as well, he was the only one I talked to on the phone that night because I was so tired but I wanted him to know I was ok. Mom texted and called everyone else, her phone was busy that day! For the next few days actually. I started texting again pretty soon afterwards too but I was later told my texts weren't too clear haha and they were very short haha. In my defence I'd just had brain surgery!! 
The next day people started stopping by and bringing gifts...I have some pretty great people in my life! I got lots of cards, some flowers, and other treats to cheer me up - even a penguin and some St Paddy's day garb! I started messaging people more too but I wasn't using my phone too much just because it was tiring and I hate doing much with my hands when I have the IV in my wrist :( It was a couple of days before I could play cards with people. 
I was in the hospital for 4 nights all together and in 3 different rooms haha. Apparently its good when they move you though because you're well enough to move! My first room was private but after that I had to share. My first roommate was a patient of my surgeons as well. Poor woman had cancer on her olfactory gland and had it removed, she was all the way here from Moose Jaw. She was very friendly though, I had a good chat with her, she seemed kind of sad and wanted to talk about it so I'm glad I could lend an ear. They moved me just a few hours later though...at 5am I got a flashlight shining in my eyes with a voice saying "Sarah? we're moving you" and i was just like right nowww? boo. I'd just gotten to sleep. it is so hard to sleep in the hospital. I had to get mom to buy me one of those sleep masks for my eyes. My second roommate was a man in his forties I'd guess who had two kids. His story broke my heart. He'd come in with a sore shoulder and was now going for all sorts of tests. Well, his wife had just left and he was sleeping finally - apparently he hadn't slept in weeks b/c of the pain - and mom and I were sat quietly on my side of the curtain when a dr came in and woke him up and started telling him they suspected he had lung cancer. Well I'd finally become mobile the day before and was allowed out of bed (the occupational therapist and physical therapist came to see me and everything to make sure everything was working ok...kinda funny, I always put kids in my class forward to see these specialists and now i was!) so I just said to mom, lets go for a walk so he could have a bit of privacy poor guy. imagine being woken up to be told that, alone, with strangers on the other side of the curtain. When I left the hospital I gave him my rock Stacey gave me that says "courage" on it. Mom brought it to the hospital for me and when we heard his news we both looked at each other and thought the exact same thing, he should have it. I didn't need it anymore. It was heartbreaking to give it to him as he thanked me with tears in his eyes but it was a good thing I think. 
It was mom's birthday on the 18th - and the hospital gave her the best present ever! My release! I was happy I could celebrate with her at home. One of the endocrinologists had stopped by the day before with the good news that my levels were still dropping like they wanted to see and he'd been in touch with my dr. They just had to monitor my levels a bit longer til I could go. We were home just in time to have Desiree and Lynn stop by with the birthday dinner Des and I had arranged to have in the hospital but could now enjoy at home!! I asked her to get balloons and bring mom's presents too to make the day as fun as we could and it was so much better celebrating at home. 
All in all the hospital stay wasn't so bad mostly thanks to all of my visitors! Its hard to compare my experiences but I think this one was relatively good in comparison. The first time I wasn't allowed to lay flat because I had so much bleeding, then the second time I wasn't allowed to sit up for 2 days because there was a leak, and then this time I just don't think they cared either way so I got to do both! Yay! It was my longest stay but that wasn't so bad. I had my laptop and dvd's from Dee and my phone, oh and TV was free this time for some reason so that was a bonus. I still wasn't so sad to say goodbye to Foothills hospital for awhile though. I'm determined to only go back for checkups! 

Gearing up!

Mom flew in today! I totally teared up on the way to the airport to pick her up for some reason...maybe because I'm happy she's here? Makes me feel a bit better. ALthough it also makes me realize surgery day is fast approaching and I don't feel ready for it. I think I felt this way last time too, just very anxious in anticipation. I keep going over what it felt like to be checking in and waiting to be wheeled into the OR and it makes me so uneasy, blah!! I wish it had worked last time but what can you do? This time it will work for sure and life can get back on track!! I feel like I'm being silly but I guess it would also be weird not to be a little bit scared right? This week has been super busy...meeting up with friends - I almost feel like a make a wish kid somedays because people are so kind and doing nice things to make me happy and making an effort to see me and wish me luck for Wednesday. I'm also trying to organize everything and make sure my house is clean so I don't have to worry about all that junk when I get out of the hospital. It's mom's birthday on the 18th as well so I've arranged with Desiree to bring in her gifts, cake and dinner to the hospital if I'm still in there on Sunday. I hope not though! Wouldn't it be a great birthday gift if I got to go home for Mom's birthday?? Maybe I should give her a cake with some candles early so she can wish for that hahaha. Wait wait, I can't be choosing other people's wishes for them thats not how it works haha!! I bet mom would wish it for me though, she's sweet like that. Plus I don't think she likes spending that much time at the hospital either haha. Anyway, we're going to enjoy the next couple days as much as we can! Going to go to the mountains tomorrow after I go in for bloodwork as its supposed to be a lovely day. Shopping on Tuesday maybe - I thought I'd bring mom to the mall while I still have some energy and interest haha, I remember taking her shopping after my surgery last time and really not being in the mood and forcing myself to walk around and not be too miserable. My goal is to not be moody with Mom! I feel like I take out my frustrations with this whole thing on her sometimes when I get upset and I don't want it to be like that, i want to have a happy couple of days. Now if only I could stop my brain thinking about it so much and get some sleep!! 

Images of Change

When I was first trying to get diagnosed with Cushings a website suggested I bring in a progression of photographs chronicling how I had changed over the past few years...thought I'd share! I knew my body was changing but didn't realize how dramatically...I feel like a totally different person. 

May 2007
Pebble Beach with Neener
Right after graduating teachers college, working in Marathon.

October 2007
Dad's 50th Birthday
My first visit back to Marathon after moving to Calgary

July 2008
Stampede!

July 2008
Banff

October 2008
Mom & Dad's Thanksgiving Visit
Lake Miniwanka

October 2008
Storybook girls

December 2008
Janine & Roger come to my rescue when stranded in Toronto
Dear Santa: May I please have a flight home?

New Years 2008/2009
Changes!

February 2009
Vegas! Outside the Bellagio

February 2009
Vegas Baby!!

April 2009
Marathon's Calgary chapter takes over Cochrane

July 2009
Bridesmaid for Dee

July 2009
Michelle & I at Dee & Kev's wedding

August 2009
Janine's Maid of Honour

October 2009
Ceiling Fans!

July 2010
Banff

July 2010
Lake Louise
(I remember feeling soooo chubby this day!)

July 2010
Lake Louise
(at the top of the mountain where Brandy nearly had to leave me hahaha)

July 2010
Brandy's first stampede! Yeehaw!

October 2010
Nana's Thanksgiving visit to Calgary

October 2010
Bayside Girls!

New Years Eve 2010/2011

January 2011
Scarborough Seafront

March 2011
Saskatoon

July 2011
Sacre Coeur in Paris

July 2011
View of Paris

July 2011
Summer in England

September 2011
Mom's visit to Calgary ~ Prince's Island Park

September 2011
Janine, Brandy & Gabby's visit out west
Lake Miniwanka

October 2011
Thanksgiving in Invermere

February 2012
Banff

Got a date!

February was a great month!! My sister came out to see me and we had so much fun. It was nice to have some company and show her around the sights. I dragged her to my appointment with the endocrinologist and neurosurgeon as well haha, woooo highlight of her trip I'm sure!! It was good to have an extra set of ears in there though and someone who understands whats happening without me having to explain it to them. It sounded like the neurosurgeon wanted to just go in and take the pituitary gland right away...but I'm still kind of hesitant about that. Apparently he has a reputation for being aggressive but getting the job done. We agreed that he would go in and explore first and take out something if he found it...there's still a risk of losing pituitary function but at least there's a chance of saving it. He said if he doesn't see anything then he will take the gland out during the same surgery though so that I don't have to go through another surgery. I will have to have a second if they remove a lesion and my body still isn't cured but it will be a couple days after the first surgery so at least it will all be one hospital stay. If neither of these works then I will have to have radiation therapy probably b/c its likely the wall of the cavity the pituitary gland is housed in. I really hope it doesn't come to that!! I'm determined that this hospital visit will be successful!! This whole journey has been a huge learning experience and I have grown a lot...but quite frankly I think I've learned enough and I'm over it! Ready to move on thank you!! I have a whole new sympathy for people who are overweight and really admire people who have lost weight. My goal is to lose 80 pounds and it scares the crap out of me! That is like an entire person. Well a child anyway haha. I know I can do it though once all of this extra cortisol is gone. 

So yes! I got the surgery date. This time next week the surgery will be over and I will be sleeping in my hospital bed dreaming of my newly cured self :) Wednesday March 14th. I'm trying to be positive but I'm really not looking forward to it 100%. I can't wait for it to be done but at the same time I really don't enjoy the whole surgery experience. My mom is flying out this Sunday so we will have a couple of days of fun before heading back to Foothills. Poor mom, it'll be her birthday while she is here...March 18 so I'll likely still be in the hospital - do I know how to celebrate or what? haha! She said that the best gift of all will be a successful surgery so here's to hoping she gets her wish. I can't wait for this to be done so my parents don't have to worry anymore. I feel guilty hogging my mom though b/c Dad is going for his hernia surgery on the 20th...she wasn't going with him anyway but still I'm sure he would have liked her company leading up to it. I didn't really feel like I could ask my doctors to reschedule though haha, we've been waiting awhile to fix this. 

A few people have been asking me lately, including a dr, if I've been seeing a mental health professional to talk about my whole experience and what I'm dealing with. I never really thought about it to be honest but I can see how it could be helpful to someone. I honestly don't know what I would talk to them about really which is why I haven't gone. I am lucky enough to have a great support system of family and friends who I have definitely confided, vented, cried and laughed with throughout this. Perhaps I have relied on them too much and should have gone to someone trained to listen but I appreciate everyone who has been there. Knowing that people care and are thinking of me means SO much and has given me the love and strength to cope so thank you! <3 It has reminded me how much a smile and hello means and I will try to remember to pass it on to others.

Neurosurgeon Appointment

Had my appointment this morning. The surgeon apologized for the mix up with the letter though I’m still not sure I understand what happened there. He told me he’s had four patients with Cushings disease in the last little while and 3/4 of the surgeries were successful…and of course I was unlucky number 4. Figures. I really wish there’d been a mixup and my surgery was successful after all but I guess I need to just face reality. Anyway, there was a lot of info thrown at me and he laid out all of my options. 1) Stay on the ketoconazole medication for the rest of my life – which my endo said she doesn’t want to do because it is harmful and the surgeon said it wasn’t ideal either 2) radiation therapy which has a 60-80% success rate but isn’t effective for 1-2 years afterwards 3) surgery to slice through the remainder of the pituitary gland that wasn’t removed last time to see if they can locate anything and if they do remove it 4) remove the entire pituitary gland.  If the less invasive surgery isn’t successful then they would have to go back in a couple days later to remove the whole gland anyway. 5) removal of the adrenal glands. I just don’t know what to do. I really don’t want to lose my pituitary gland because that would mean going on hormone, thyroid and salt water management for the rest of my life. I asked about fertility as well and he said he didn’t think that would be too hard to manage with hormone replacement therapy but we should ask my endocrinologist. I asked how certain they were it was a pituitary problem and he said very certain because of my ACTH production. I just don’t want to have an aggressive surgery and end up in pituitary failure and not be cured and have to go back for more surgeries or treatments. It just sucks. I was relieved that he didn’t make me decide right then and there how I wanted to proceed. He also offered to go to my endocrinologist’s office and arrange a time for the three of us to meet which I really appreciate and took him up on the offer. I just don’t feel like I know enough to decide for myself what would be best and maybe the two of them together can help me make the best choice. That will happen in the next couple of weeks, he was going to email her right away to arrange something. Then if I choose to do the surgery he said it would happen in a week so hes moving things along quickly at least!  He said he doesn’t want to keep me waiting any longer. I am still confused about how we went from see you next year to lets remove your pituitary gland within a span of a week. I’m wondering if they got me confused with those other three patients which doesn’t make me feel too confident. I hope they have the right person! 

Results and Confusion

I talked to my doctor today and she was just as confused by the letter as I was and told me she would call the surgeon directly to see what was going on. He called her right away and within half an hour I’d heard back from her and had an appointment with the surgeon booked. I’m feeling very nervous for the appointment and was so happy I was out lunching with Dee when I got the calls to keep me sane! It went from see you in a year for another scan to can you please come in and see the surgeon at 8am Friday? He wants to see you first thing. Like oh my. I asked my endocrinologist a few questions about it but she told me she felt more comfortable if the surgeon answered questions about the procedure, guess that makes sense since he’ll be doing it. My question is though – if the scan clearly didn’t show anything, what exactly is he going to extract with those fancy tools of his?? The endo said it might be a more aggressive surgery this time…maybe taking out part of the pituitary gland and she kind of alluded to the possibility of taking the entire gland. I would really prefer to not have that happen. No sense freaking out about it until I hear more though. Good thing I was out though, if I’d been home alone I probably would have been in tears talking to the doctor. Although standing in a doorway on 17th Ave wasn't totally ideal either hahaha, man the red mile is a loud and busy street on a nice day! I asked if there were other treatment possibilities and she said she isn’t comfortable keeping me on the pills I’m on now longterm and that radiation therapy is an option but would have effects on pituitary function in 5-10 years. Nothing really sounds ideal. Its too bad I misplaced that magic wand of mine and cant just wish it all away on its own. I can’t believe that some people inflict this disease on themselves. I was reading that in some of my googling…it can be caused by taking too many steroids, which I clearly didn’t do haha. But really, not worth the risk people!! Find another way to bulk up haha. Weird though…something caused by taking steroids actually weakens muscles and bones. Ah well I don’t pretend to understand many things in life!! On the bright side I know how to get the doctors moving – get another doctor to phone them! Now Dad doesn’t have to fly out and yell at them like he wanted to haha. My poor parents, I know it is tough to be far away, mom wanted to come out to the appointment with me on Friday and Dad was ready to pay for private care. Lucky for me I’ve got friends here willing to even take time off work to go with me. I was going to go by myself since its so early in the morning, it is inconvenient and I feel bad asking, but Desiree insisted she wanted to go and Dee was going to go if Desiree wasn’t. They both felt quite strongly that it wasn’t an alone thing and I suppose they are right. I will feel better with someone else there to listen because I might miss something…plus if I hear bad news it would be better to have someone with me. Desiree already has her pad of paper ready apparently to take notes and suggested we record the appointment on her iphone hidden in her pocket in case we miss something haha. We’re like spies. Wish our mission was a tad more exciting though!