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!

Results please!!

Well. January was a whole lot of waiting for nothing. I finally got my results yesterday after a couple of weeks of phoning the offices bugging receptionists. I feel bad but seriously what was the point of getting an urgent MRI if they aren’t even going to look at it. The surgeon had the results on his desk for two weeks at least that I know of and I still didn’t get a call. The receptionist just told me she couldn’t tell me anything because he hadn’t told her anything – fair enough but please don’t sound so annoyed with me, its my health, I’m just worried. I didn’t even call much – twice. Well three times, and the third time I phoned she tells me oh yes, I mailed your results on Friday. Like wtf. You know I’ve been calling, why would you just mail them? And I was under the impression I was needing to go in for another surgery so surely I’d need more than a letter in the mail?! Turns out the letter said the surgeon reviewed my MRI and there is no evidence of recurrence so a followup MRI has been scheduled for January 2013. Omg. I don’t even know what to do, I am about to lose my mind. I called my endocrinologist to ask her about this since she is the one so convinced they didn’t get the full tumour but of course she wasn’t in the office. I left a message but she hasn’t gotten back to me yet. Normally she’s pretty good at calling me though. I am just so fed up. We need to do something about this, clearly if there is no tumour there is another issue and I’d like to get to the bottom of it. I want my life back already. Maybe this will mean I can go back to work sooner though? Its going to be hard getting back into that routine of getting up early!! I still have so much trouble sleeping at night, its ridiculous. Even when I get up early in the morning, like today I was up at 7 to go for bloodwork, I just feel like poo all day and still can’t sleep at night. I guess after a week or so of working I’ll be back in the swing of things but I’m scared to go back. As excited as I am and as much as I want to get back to the kids, I’m nervous. I hope I haven’t lost my touch and forgotten how to teach! I have no clue what they’ve been doing all year so I’m afraid I will be out of touch and won’t know what to do. The kids probably won’t want me back anyway now that they have had their other teacher all year they won’t want to say goodbye to her! They haven’t forgotten about me though. A few kids have sent me messages saying they miss me and want me to go back, and a few parents have sent emails asking how I’m doing which is super thoughtful. It feels nice to be missed and remembered! Oh well, don’t know what the endocrinologist has in store for me so we will see when I go back...I’m cleared til Spring break for sure. What to do what to do haha. My sister is coming in two weeks to visit though!! Can’t wait!! I thought I might be scheduled for surgery while she was here which would’ve sucked but I guess I don’t have to worry about that happening now, sigh. Oh well. If the dr doesn’t phone me tomorrow I don’t care, I’ll phone them again. Gotta be pushy I guess. I just kinda feel like they don’t care about me anymore, I’m old news and they are bored with me now. They just keep telling me I need to wait and say how patient I am. Well I’m running out of patience. They don’t have to live with this crap every day and I don’t want to anymore. Trying to stay positive but they are making it hard! I’ve been reading other people’s messages online about their experience with Cushings and it sounds like they have it way harder than I do. I feel guilty for being upset about it in comparison, and it also scares me thinking of what this might become.

Back to Calgary and Reality!!

It was tough coming back to Calgary this time. I think it was because other than doctors appointments, I’m still not at work so I don’t have much to do. This summer vacation turned Christmas break turned I don't know what is getting out of hand!! Its kinda quiet being back to living on my own too...I miss having someone to chat with and play cards with on a night! Marnie and Jay were down visiting my first weekend back though which was fun. Marnie and I chilled while Jay was at his course and I helped her with some wedding stuff. I had my MRI so now we just wait for the results and hopefully will be booked in for the next surgery super soon and can get this show on the road! Now that I’m back I am very anxious to get things going. As much as I don’t want to go for surgery again because it freaks me out, I really want to get it over with.