September

The rest of September went by pretty quickly. I was moving pretty slow but quickly felt pretty much the same as I had presurgery. Being off work and knowing everyone is at school carrying on as usual is kind of weird but I was hoping to go back soon – despite many people encouraging to take as much time as I can and to not rush back. My case worker handling my long-term disability claim is fantastic and very supportive. She seems genuinely concerned about my wellbeing, even offering for me to just call and chat with her if I ever need someone to talk to. She is always asking if I have enough support – I definitely do! Near and far.

Another highlight of the month was a visit from Janine, Brandy and Gabrielle! Janine called me right after my surgery and told me to choose, her come here or me go there because Roger said she could book a ticket! Yay! Selfishly I chose her to come here b/c I really couldn’t face travelling the day she called haha so she booked herself a ticket and prepared for her and Gabby to visit. When I picked her up at the airport some crazy lady jumped out from behind a post asking the time – Brandy came too as a surprise!!! We had such a great visit…even if they were sick while they were here and made me sick too LOL. I was hoping the nausea was a sign of recovery but no…just a case of the flu. It was wonderful having them stay with me, I miss my girls. We mostly just chilled because I tire easily and Janine does have the baby so its hard to ya know climb mountains but we looked at lots of mountains! and they got their crave cupcakes. We had a lot of laughs and they gave me a shoulder to cry on when I had one of my little breakdowns I seem prone to worrying that I’m not getting better. Not gonna lie, it hasn't been all sunshine and rainbows and although I try to stay positive about getting better it sometimes feels hopeless and its frustrating not being able to do anything but wait it out. Thanks for being there ladies. I also took Janine and Gabby into my school for a visit. Seeing the friendly faces did me a lot of good. My coworkers always make me feel so welcome and it was nice to catch up with them. We were there for the Terry Fox run so a lot of parents were there too and so many came up to say hi and see how I was doing. Its weird, I remember my first day of school there and how I knew nobody…after 4 years there I really feel like a part of the community. And of course the students!! The kids always put a smile on my face. It was such a great feeling having so many past and current students run up excitedly to say hi and ask when I was coming back. Even kids I’ve never taught walked a bit with me to chat. It was good to go back for a visit, just what the doctor ordered. A few teachers were shaving their heads to raise money for cancer so that was a fun thing to be a part of. I made my donation and cheered them on haha! I normally do my own fundraising for cancer in September and do the Light the Night walk for the leukemia and lymphoma society of Canada in recognition of my dad beating non-Hodgkin’s lymphoma twice (go Dad!) but the timing of the walk just didn’t work out for me this year – next year for sure.

Round Two! Let's try this again

It was tough saying goodbye to my dad and Marathon but mom and I made our way back to Calgary on September 4 – welcomed warmly at the airport by Dee!! When we got back to my condo we were surprised by a fridge stocked full of food and flowers…that sneaky Lynn from work had got Desiree to fill the place so we wouldn’t be hungry when we arrived. How thoughtful is that? Just another example of the great people in my life J Mom and I spent the evening settling in and organizing since the next couple of days would be busy.

September 5 was my birthday and I was spoiled rotten J Pampered in the morning with a facial and mani then mom and I got me a macbook in the afternoon woo! No time to play on it just yet though because we went out for dinner with a bunch of friends – great way to celebrate and get a chance to visit everyone I hadn’t seen in months before I went in for surgery the next day. Love you all! Nothing like blowing out a candle in a bowl of butter chicken haha.

After dinner mom and I returned home to make sure everything was organized for the next morning. Don’t have to be at the hospital til 9 this time – way better than last time’s 4am wake up call!  I was feeling a little more nervous this time I think which is weird since I’ve done it before, I kinda know what is coming. I just keep picturing the operating room and its so weird to think I have to go back in there, yuck. Just a bit apprehensive hoping it works this time. I still really don’t want to do it but it will all be worth it in the end and it makes it easier knowing so many people have wished me luck and are thinking of me.

Checking in to the hospital was much easier this time, mom and I are pros now haha, we know where to park and everything. We had to wait in a different waiting room this time, last time I got to hang out on a bed. It was weird, they have screens with patient names and surgeon names that update the status of their operation – didn’t see my name yet though haha. Again I got wheeled through the halls on my little bed with mom walking me down to the OR, and again the surgeons and anesthesiologist (who looked just like an old roomie from Uni, luckily it wasn’t him haha no offense Aric but I’m not sure how I’d feel about you coming at me with a needle) came to see us before going in. Everyone was really friendly and tried to make us feel at ease. The neurosurgeon even took my mom’s phone number so that he could call her personally after the surgery to let her know I was ok and in recovery which I thought was amazing. Big change from last time when poor mom was wandering for hours with no one telling her how I was doing. It made me feel better about going in. I wanted to call her myself to let her know I was out but obviously that wouldn’t be happening, way too doped up haha! After I said see you later to mom they wheeled me into the OR and started hooking me up to everything and making me comfortable, some of the nurses remembered me from last time which was sweet. Last thing I remember is seeing stars as the medicine kicked in and I fell asleep.

I woke up a couple hours later in recovery feeling WAY better than the last time I woke up there. Not only was the pain not as bad, the nausea wasn’t as rough and I was also greeted with the news that they were able to get the tumour this time. I was so so happy I wanted to see my mom right away and call dad. It took a little while to get me ready to go up to the neuro ward though. I had some pain but if they gave me more pain meds I’d have to hang out there a bit longer and I just wanted to get settled in my room where I could have visitors so I just waited.

My memories of the hospital day are a little blurry, especially that first day. Mom got there pretty quick though I’m not sure at what point, and I remember her putting dad on the phone to talk to me and relaying many many messages from friends and family. Mom did so much texting that day! What did people do before cell phones were allowed in hospitals?! Haha. Brandi popped in to visit too but I wasn’t the best company. I tried to have a conversation but I was still in and out of consciousness like all that day haha. Last time I was in surgery I wasn’t supposed to lay down, this time I wasn’t allowed to sit up. I was on flat bedrest for the first couple of days which was really fun, ugh. I was also on an all liquid diet which made things interesting. You should’ve seen Desiree trying to feed me Tim Horton’s soup the next day when I was on a 30 degree angle hahaha. Good friend.  Straws were also a good friend that day – reminded me of when Dee and I invented the armpit cupholder that time she came to the hospital with me and I was on flat rest for the afternoon. Oh the state my friends have seen me in since all of this has happened!!

I had to stay in the hospital for 3 nights. The first night I had my own room in the critical unit since I was fresh out of surgery but the second day I got moved to the other ward where I had a semi-private room because there were no private rooms available. Paid extra but totally worth it – people were sleeping in the halls behind screens! I had to share my room with men but I’d take that over the hall any day.  They were nice guys. The first guy was chatty and it was nice to have some company. He passed out and fell over in the middle of the night the first night which was super scary since he’d just had back surgery and I couldn’t do anything because I literally could not get out of bed, but before I could even fathom what was happening and reach the call button someone was there thank goodness. They let him go home the next day which I wasn’t so sure I supported since he’d passed out and all but I was still jealous b/c I wanted to go home too. The next guy to move in was nearly 90 and told me stories about how his house was in a hill and he ran his own ranch. The poor man had just come in for a scan and they ended up keeping him overnight. I woke up the next morning to a lady screaming “help me help me get me out of here” over and over, it was awful, I felt so bad for her. Then a nurse replied “you’re ok!” and then she started yelling “oh yeah! I’m sorry!! I’m ok!”. Man oh man. Whoever said you should go to the hospital to get rest was a liar. So many people around all the time its always crazy. People are constantly waking you up through the night to check your vitals and the drs rounds start at like 6am. Plus it was soooo hot in that building it was ridiculous. Thankfully Teri had a hand fan in her purse when she popped in for a visit and then mom and a nurse managed to track down a fan for my room. I was only in for three days but I was getting antsy to get out. The second day I got to sit at a 45 degree angle and it was the best ever hahaha! And when I was allowed to get out of bed I was so excited. You really take sitting up for granted sometimes! But I listened well b/c I didn’t want to make recovery worse. Visitors made it so much easier, it really meant a lot that people made the effort to stop by and I hope I didn’t scare you all too much but doing my hair and makeup just wasn’t a priority hahaha. I remember the different doctors would all have a different opinion of when I could leave, and finally they said I cold go and they brought me a menu to choose the next day’s meals – the first choice I’d had since coming in since they kept putting me on the liquid diet, luckily mom brought me Timmy’s everyday. Anyway, when they handed me that menu I totally cried as I chose my lunch because I just wanted to go home. Luckily I never did get that tomato soup because the surgeons’ nurse came and sprung me that afternoon!! THe drs were back and forth because while I seemed to be recovering well, the endocrinologists wanted to monitor my cortisol and hormone levels to see if the surgery was successful. they put me on cortisol pills so that my body wouldn't be shocked. The tumour was making my body produce crazy high levels of cortisol so to suddenly stop producing it would be like going through withdrawal much like drugs or alcohol. I never did experience these symptoms though - the only time in my life that I really really wanted to feel nauseous because it would mean I was better! Anyway, with the all clear we were outta there. Mom made a ton of trips to get my things to the car and then I waited by the front door for her to pick me up…and so her career as my chauffeur began!! I tried driving while she was here but I had such a nasty bruise from the IV I just couldn’t do it. I think I took an entire bottle of tylenol the first couple of weeks home - not for my brain but for the pain in my arm! Being home was a great start to the weekend and I still had just over a week with mom here to hang out before she would have to head back home. We took it easy but I didn’t want to bore mom too much plus I was going crazy from the rest so we made short trips out to the mall and other places. Lots of people came by to visit too, so nice. I really can’t tell you how much the visits, phone calls, messages, and gifts all meant. I felt truly loved and very special to have such thoughtful people in my life. Thank you.

I will figure this out!!!

Sorry - I am working on updating this more regularly but I really need to be in the mood to write I find. I'm going to figure out how to add pictures as well to make the page a bit more interesting. Please bear with me while I figure out this whole blogging thing, I promise I'll get better at it! Thank you to everyone for your support and words of encouragement :) it was really great to hear.

Summertime

Well! Recovering from brain surgery wasn’t as bad as a I thought it would be! I had so many visitors, phone calls, messages and gifts during my recovery it was truly touching. People are so thoughtful and it meant so much. I felt truly cared about.The first week I was a bit slow but I had my mom staying with me taking care of me and then plenty of friends to step in when she had to go home. I couldn’t lift anything heavy or bend over which is actually quite limiting but the worst part was sleeping sitting up for the first few days at home!! You really take laying down for granted haha. So uncomfortable. At least when I was in the hospital I was so doped up I would just fall asleep. The pain wasn’t too bad though, slight headache but nothing a bit of Tylenol couldn’t fix. My nose bothered me but it has been through a lot – that’s how they got to my brain. Kinda bizarre that they can do that but it beats shaving my head!! The doctors weren’t able to tell me when the next surgery would be so the waiting continues.  They did however clear me to fly!!

My follow-up with the neurosurgeon isn’t until the end of July which actually worked out quite well for me. It meant I could go on a 3 week trip to England with my mom and dad which was so much fun! Not only did I get to see so much family but spent nearly a week in Scotland and went to Paris for a girls night with my mom, Auntie Tracey and cousins Terri and Lia! I really wanted to see more of Europe and said the next time I went to England I would have to visit continental Europe and I did! Paris was like a whole other world, just amazing. We weren’t there for long, just one night, but we saw as much as we could!! I broke my shoes we walked so much but it was totally worth it. Next time I would love to spend a bit longer there. Sit at street cafes in the mornings, sightseeing in the afternoon, then stroll along the Siene at night. We did a river cruise and it was just magical. It was great to go up to Scotland as well – again a totally different world where I lost the ability to read hahaha. All of the signs saying the names of towns was just beyond me hahaha I swear it wasn’t english.  My mom, my Auntie Cyn and I took the train up to Carnoustie where my Auntie Ange lives – a great way to see the countryside! It was a bit chilly while we were there but we had a lovely cottage right on the sea – we even saw dolphins from our window. My dad and Uncle Deryck drove up for a night as well and we had a bonfire in the garden. We spent most of our time in England visiting with family and didn’t stray too too far from Scarborough but it was nice to travel around the Yorkshire countryside. Saw a lot of places we used to visit when we’d go over for family holidays and ate lots of fish and chips. Can’t wait to go back again! I love being able to pop over to family’s houses or them coming to us for tea on a night, or going down to the seafront for a stroll. I didn’t have a phone, computer or tv the whole time we were there and I thought I’d miss it but we always found something to do that I really didn’t at all. Of course I missed all my friends back home but Facebook really isn’t all there is to life hahaha!

Having time off also meant I got to spend a few days in southern Ontario visiting friends and family there before and after jetting off to England! My friend Janine just had her first baby and I was so happy I got to meet little Gabrielle just 10 days after she was born. My time in southern Ontario was supposed to be longer – hoping to stay for a few weeks after getting back from England before heading back to school in September but I had to get back to Calgary for my followup with the surgeon at the end of July. Unfortunately this meant missing the wedding of two of my good friends I went to Brock with L Congrats Kimmy and Jamie!

After the trip to England I spent a night in Newmarket with my aunt and uncle before flying back to Alberta. The followup appointment went well but one of my surgeons is off all of August so that means I can’t be scheduled for surgery until September. I was really impressed with him though, he was trying to get some OR time and come into the city to do my surgery during his time off. Too bad it didn’t work out! When I called home to tell my parents my surgery wouldn’t be for another month dad suggested I go home for August. So I did. It was a perfect summer in Marathon, not too hot not too cold. Many a great afternoon was spent reading in the garden and I even saw the aurora borealis one night sat around a fire with the family. I went home a week before my sister moved back to Ottawa so it was great to hang out with her since I hadn’t seen her since January.

I got the call for my surgery while I was home and they scheduled me in for September 6 – the day after my 29^th birthday. Happy birthday to me! In a way it is a gift because I will finally get fixed, but at the same time who wants surgery for a birthday? I’d much rather just eat cake. Guess this means I won’t be heading back to work in September either which is upsetting. I told my grade one students that I’d be back in September so I feel like I’m letting them down. I was looking forward to getting back to the classroom but the new plan is to be back at Thanksgiving!

Surgery #1

June 14, 2011

Well the big day finally arrived and at 5am my mom drove me to Foothills Hospital to be admitted for my transphenoidal removal of a pituitary tumour. Whoever thought I'd be going for brain surgery? It seems so surreal. I felt pretty prepared. I'd googled lists of things to bring to the hospital and read about other people's experiences with the same surgery. We'd been to the hospital the day before for all the pre op tests and talks. 

Getting ready to go into the OR wasn't too bad...the hospital staff were great. I saw both of my surgeons before hand which was reassuring, they were so friendly and we had a few laughs before going in which made me feel more at ease. I also met the anaesthesiologist who my surgeon introduced as the guy who put his father under for surgery. I was very confident in my team and walked into the OR feeling positive. The hardest part was saying "See ya later" to my mom because I knew she was scared and had to spend the next few hours waiting alone in the hospital for me to come out.

The next thing I knew I was waking up in recovery, feeling incredibly nauseas and with a very bad headache. Still too groggy to speak I could overhear the nurses saying "It didn't work, they couldn't get it" and I just remember thinking ohhhh I hope they are talking about the person beside me because I do NOT want to do this ever again. Turns out it was me they were talking about though. Unfortunately I lost too much blood during the surgery and they had to stop before they could get to the tumour on my pituitary.

One pro about the surgery not being completed was that I only had to spend one night in the hospital. The nurse even wheeled in a chair for my mom to sleep in so she could spend the night with me. I only had time for two visitors before they let me go home. My mom was able to spend a week with me at home which was definitely a big plus in this whole experience! The recovery from surgery was pretty good, I slept upright for a few nights and couldn't lift heavy things for awhile, but I only took extra strength tylenol for pain. My nose leaked for awhile (gross I know but I'm being honest) but nothing too noticeable. I was able to go out in public for short periods of time after a couple of days, I just found I would get tired quite quickly. I was lucky to have my mom here to help me out. She was fantastic and cooked and cleaned and drove me around :) Love you mom!

However...it also meant back to the old waiting game. It would be another 2 months before I would be scheduled for a second surgery. 

Some thoughts before the first surgery...

June 2011

Time is something I feel is lacking lately – this surgery is coming up so fast and I have so much to do beforehand. It is June so of course I have report cards to write as well as organize the end of the year. Luckily my administration treats me like a family member and have been amazing. Another teacher at my school is taking over my class and I know they couldn’t be in better hands and I feel so much comfort in that. They offered to have someone else write my report cards but I can’t let them do that so I am working hard to try and get those done on time. Unfortunately I don’t see it being possible to pack up my classroom so hopefully that isn’t too big of an issue – again something they said they would take care of. We are reorganizing our school as well and where we are teaching and it looks like I have to move classrooms which I begged not to do but what can you do. I just feel bad leaving that for someone else to have to take care of. At the same time there is a part of me saying…don’t make your last couple of weeks before surgery all about work. Enjoy your time too, just in case.

It has been really hard being so far away from my family during all of this. They do the best they can from Ontario but it sucks only being able to chat on the phone sometimes. I hate going long chunks of time without seeing them because I have changed so much physically I am afraid to shock them when I see them. I also hate making them worry so much about me because I know they do and it is just as hard for them to go through this as it is for me – maybe even harder. It breaks my heart to hear the worry in their voices or my mom crying because I’ve phoned in tears about how I’m feeling. I just let the stress of life get to me and then think about the negative parts of this disease and have one of my lows where you can’t help but cry. I just don’t always know who else to call because it is my family who I know I can count on for comfort, reassurance and unconditional love. I know they don’t care what I look like and just want me to be healthy again. They have just gone through so much in the past couple of years I feel bad adding to it, even though I know it is beyond my control. I definitely didn’t ask to be sick! My mom was diagnosed with Addison’s Disease and has to be on meds for the rest of her life (though she is doing great), my dad is recovering from his second round of cancer, and then my dad’s mom passed away this year as well. Of course just the regular daily stresses as well and my sister went through a rough time with her postsecondary schooling and has moved home which wasn’t the smoothest transition for any of them. Despite all of this going on they have really been there for me and I hate that I was refusing to go to the doctors when they first asked me to. I really couldn’t face another one thinking I was just fat and lazy though. I am glad I finally did and felt so much better once a doctor told me I was crazy for thinking it was aging because I am young and there is something legitimately wrong here. My mom also flew out to see me in hopes that she would be here for my IPVSS but of course it was scheduled for not long after she left. It was still nice to just have her visit though.

An ex-colleague and friend of mine here in Calgary actually met another woman who also has Cushing’s Disease. We exchanged information and she met with me to talk about her experience and to give me support as I go through this. It was comforting to know I wasn’t alone and that she seems to have recovered fairly well. There was some long lasting effects though and she seems to still suffer from it 9 years after her surgery. It was also unsettling because she is still suffering and I was under the impression symptoms go away following surgery. She also told me a story of a girl dying during the procedure which really freaked me out right before I go in! I do think it is important for people who are going through similar things to share their experiences though. It is nice to know you aren’t alone and you can give each other such valuable information and comfort.

I am definitely looking forward to something being done to treat this disease. I have been trying to live as normal a life as I can with it but it truly is debilitating. It is hard to face the world everyday when you hate the way you look physically. I know that there are so many worse diseases out there that you can have so really I am lucky it is just Cushing’s but that doesn’t always make it easier to get dressed in the morning. Clothes shopping puts me in tears lately and I am about two steps away from shopping in a maternity store. I feel like tweedle dee or dum from Alice in Wonderland or the M&M’s guy. It is so hard to find clothes when your limbs are thin but your middle is so darn round. It’s expensive too! Having to buy new clothes all the time because your weight is spiralling out of control. My dad told me to look at it as though I’m buying these clothes for charity and I’m just borrowing them for awhile. I sure hope he’s right. I’m also slowing down a lot. It is hard to even walk up the stairs to my condo some days and on a Saturday when I don’t actually have to leave the house it is so easy to just sit on the couch and nap because that is all I want to do. Keeping busy with work has really been the way I’ve been keeping active. I had to give up yoga and I wasn’t sure if that was because my gut got in the way because it was so big or the breathing problems I was having. I feel so silly getting out of breath just bending over to tie my shoe or getting up out of a chair. My school has an annual teachers vs students basketball game and I couldn’t play this year because I was embarrassed of what physical exertion does to me and how I look in sweatpants plus the added risk of fractures made it unsafe. I didn’t like facing the questions though. As one of the younger members on staff it must’ve looked suspicious. Again the questions of whether or not I was pregnant. Last week a former parent of one of my students ran into me at the theatre and she asked me when I was due. When I replied that I wasn’t, she said “really?” which just made it worse. I didn’t want her to feel guilty for asking because I do look pregnant but “really?” is not a cool response. I suppose I should take advantage of this while I can and start parking in the expectant mother’s spot at the mall. I need to since its getting harder and harder to even walk. My feet hurt constantly now and I’m limping. I’m assuming its because of the extra weight they are supporting but I googled it and it could be bone fractures. Just another thing to bring up at the doctors next week. I am supposed to meet a friend for a walk tomorrow. I already warned her I’ve slowed down but now I don’t even know if I should be walking much at all. I just want my life back.