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.

Christmas Break

Christmas break was fantastic and just what I needed. I spent three weeks in Marathon and although it was pretty low key it was nice just to have some company and spend time with the family and my friends. It was our first Christmas without Nana but we still celebrated like she would have wanted us to. Three of dad’s siblings came to Marathon and we had a great time – played games, chatted, went sliding just as us Rogers used to do when we were small. A few more people in Marathon know about my disease now too and were supportive. Its hard going out there because people don’t always recognize me and I think assume that I’ve just let myself go. It is amazing how many people now say to me though that they knew something must be medically wrong with me. Its not something I really go around shouting from the rooftops though. I don’t mind people knowing but I’m not really the type to go around announcing it, that’s just awkward haha. I really do appreciate everyone being so understanding and supportive though. After Marathon I went to Candyse’s wedding! I was her MC which was a huge honour – even though I was super super nervous to do it. I’m not a big public speaker but it wasn’t so bad. Everyone always laughs at me and says but you're a teacher, what do you mean you can't speak in front of a crowd. I always say, yes, I'm teacher. Of 6 yr olds. They are far less intimidating than adults!! They love me no matter what I say and don't make fun of me ever, not even when I draw terrible pictures on the board haha. In fact I had the kids help me write my speech by giving me words of advice for a newly married couple, they had some gems like "THe husband should pay the bills". Haha, gold. If I am honest, this disease even affected my night – I know it shouldn’t have but I can’t help but let it sometimes no matter how hard I try not to. I had a dress made since shopping has been so difficult lately, so I thought this would be perfect, it would be more flattering. Not so. As soon as I put that dress on I started to cry and just hated the way I looked. My poor mom and sister didn’t know what to tell me to make me feel better, they were going to let me stay home but I knew I couldn’t. It was Candyse’s day and I wanted to be there for her – it wasn’t about me feeling comfortable and I needed to get over it. I just really didn’t want to stand in front of a crowd looking the way I did. I knew that no one would really care, especially Candsye and her family who know all about this and my friends who were there because they have been so great during this, but the fact was I cared. I didn’t want to ruin Candyse’s pictures and I didn’t want people to think I was pregnant which I know people do and can’t blame them for because I do. Its even worse now because the new medication I am on doesn’t let me drink. Here I am with my belly ordering non-alcoholic drinks just hoping no one asks me when I’m due.  These new pills are supposed to lower my cortisol levels and start reversing some effects of the disease but they are very hard on the liver. Never a perfect solution I suppose. My doctor said they are just temporary until I go for another brain surgery – just waiting for the MRI! She upped my dosage while I was home over the holidays and I had to call my pharmacy in Calgary to transfer my prescription – the pharmacist knew who I was immediately when I called and was like Sarah! How was your trip? Are you back?? Hahaha Oh good old Gerry…if that isn’t a sign I visit the pharmacy too much I don’t know what is haha. Its sweet though. Anyway, after the wedding I flew down to visit Janine and Brandy for a week before heading back to Calgary. It was my first new years not spent in Marathon or going out since I can remember! Nice to spend it with good friends…even if we did nearly miss the countdown because we had the tv on the channel, wrong time zone! Hahaha. 

Leading up to Christmas

A positive thing about being off work is it is giving me lots of time to prepare for Christmas!! Its funny, my friends still insist I’m one of the busiest people they know because I seem to be constantly on the go. Gotta keep busy! I’m not even sure what I do with my time haha I guess I just see friends more than I used to which is great. Plus I am busy with doctor’s appointments that don’t tell me any news, ugh. Gotta go for constant monitoring though. My blood pressure and heart rate are still really high so now I have to get some cardio testing done. If it isn’t one thing it is another. I’m really getting my use of the health care system that’s for sure!!

I was working on my parent’s Christmas gift – they have been married for 30 years this year so I wanted to make them a photo book of pictures of the past 30 years together. I wanted to give it to them for their anniversary but the whole brain surgery thing kinda got in the way. Anyway, I was looking at the photos and it just hit me how much I have changed because of this disease. I look like a totally different person. It was actually really hard to see myself as I am now. I saw some pictures of just 3 years ago and I remember thinking at the time wow I am really getting fat I need to do something about this…and I look so skinny, especially compared to what I am now. I think the worst part of the weight gain is the “moon face” which is symptomatic of Cushing’s. It really does make me look totally different and I hate it, I really do. I look in the mirror and its like it isn’t me staring back and now I look at pictures and forget what I used to look like. I can’t wait to get this under control and for the weight to start to come off. I feel very vain being so fixated on this but it really is one of the hardest things to deal with, no wonder depression is a symptom of Cushings too – it really takes a toll on the self esteem. Being heavy is so uncomfortable and its hard to find clothes that fit, plus I feel like people are judging me all the time. With Cushings most of the weight gain is around the middle but not in the limbs so most clothes are too tight in the middle yet super baggy everywhere else so its impossible to find anything that fits. Clothes shopping just isn’t fun. I’m constantly trying to find ways to hide my body and often leave the mall in tears empty handed. Just gotta remember, its temporary. We will cure this. It will get better. Until then, bring on the leggings! They are pretty comfy anyway.