Monday, 26 May 2014

Long time, no blog!

Well it's been awhile, but my decision to participate in the Spring Sprint in a couple of weeks made me think I should update this page and link it - just in case people supporting my walk wanted to know a little bit more about my story and why I am doing it.

It's been a busy year or so since I have last posted and many things have changed!! I can't really complain :) Life is wonderful…I became an auntie to the cutest little girl in the world, Alexa Evie, I've been able to go on some fun trips with great people, I FINALLY bought a house (c'mon build faster!!) and work is as fun as always.

The cushing's disease unfortunately continues to linger over me…some days the rain cloud is a little bigger than others, but I try my hardest not to be an Eeyore about it. Three brain surgeries clearly wasn't enough, so much for third time's the charm, BUT things have gotten immensely better. I look back at pictures from when I was at the height of everything and it makes me so sad for the me I was then, but at the same time grateful for the me I am now. I may not be back to what I was (I try not to look back at THOSE pics, then I get really sad haha) but I'm a whole lot healthier than I was, can do a lot more physically and mentally, so I can only hope things will continue to improve.

There was a period of time when they thought I was cured, happiest moment of my life, but it wasn't meant to last. The doctors are unsure of what happened…but think they must have left just a few tiny cells behind. That's the thing when you are dealing with something so incredibly small. They couldn't even pick the tumour up with an MRI at first, so obviously it would be a challenge to operate on - and I had the best team in Calgary. I don't fault the medical team at all, it's just one of those things.

People often ask what my next steps are, and I honestly cannot say. For now my doctor and I have decided to manage the cushing's with a medication called cabergolene. It's pricey, but doesn't seem to have any side effects. It is not ideal, but it's the best option for me right now. Hopefully it continues to work for awhile at least. We keep having to up the dose, so yay for benefits! Eventually I may have to start another medication which is a bit more hazardous for my liver, but we will cross that bridge when we come to it. Another brain surgery has been discussed but the success rate is only about 10% at this point. Still, it may be worth pursuing one day. Honestly, I don't want to put my life on hold anymore so I'd rather not right now. The idea of radiation therapy has also been tossed around but I'm avoiding that for as long as I possibly can…the way it was described to me, I'd prefer to have the cushing's, yikes! The doctors disagree however, as they insist cushing's is life threatening if not treated. Blah.

For now, I'm just taking it one day at a time and trying to keep a positive outlook. Life is far from perfect, and I may not be as physically fit as I'd dream to be, but it's silly to focus on that. I try to focus on the positive things in my life and appreciate every day for what it is. I have my down days but everybody does. It was actually one of my low moments that inspired me to google charities that support Cushing's Disease. There isn't one specifically for it but my search led me to the Brain Tumour Foundation of Canada and lo and behold, pesky little pituitary adenoma was on their list! I saw the link to Spring Sprint and thought, what the heck! I like to walk, I hate tumours, so this is perfect. One little thing I can do to hopefully make a difference in the future of all brain tumour patients and their families and friends.

I'd like to say a BIG GIANT SUPER DUPER HUGE THANK YOU to all of my own family and friends who have stuck with me throughout this ordeal. I know it hasn't been easy for you either and your support has made me feel so unconditionally loved. All of the kind messages, cards, phone calls and visits have touched my heart beyond words. Listening to me whine, being a shoulder to cry on, taking me to appointments, flying across the country to see me, and just laughing with me has meant so much. Didn't know you were signing up for so much when you got to know me did ya? Haha! Love you all so so very much I am incredibly lucky to have you in my life xoxo

Saturday, 22 September 2012

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:

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 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 :) 

Saturday, 9 June 2012

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. 

Saturday, 14 April 2012

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 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! 

Tuesday, 3 April 2012

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 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 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! 

Monday, 12 March 2012

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!!