Tuesday, May 26, 2015

Amen to 40!

Had you asked me 10 years ago where I'd see myself at 40 my answer would be different than today's reality.  I most likely would have said I'd like to be married and have kids, be a stay at home mom if I was fortunate enough.  Funny thing is I was no closer to those things then as I am now although cancer has sorta made me a stay at home mom to my cat if that counts!

One thing I've never heard myself or anyone else say when asked that question is "hope I'm alive at 40". That is exactly all I want to be at 40....and not so my 30 something wish list can come true but so my 40 something list can be born. Now don't get too excited about this list!  I'm not going to become a hippie and live off the land or silly things like that...I wouldn't have even done that in my 20s, but I will concentrate on how I can be a better me emotionally, physically...any way possible. After all I'm not getting any younger right?

Some people might see 40 negatively but I see it as a glass half full in this thing called life.  And why not celebrate making it to 40...it's pretty awesome..Amen to 40!  Celebrate it and any other birthday cause you should be happy to see your friends, family, pets, whatever, for another year.  If anything I think we put more timelines on things than we need to which drags us down. I saw a great quote the other day via Twitter "when things aren't adding up in your life, start subtracting". So true right? 

I've had a better week physically which is fabulous as the last 2 weeks have been really hard.  When I was diagnosed with Crohn's the doctor said I had a mild case but really he should have just said you're gonna have pain but others get it worse. Mild to me meant not too much pain, easy to cope, change a few things you're eating, mild taco seasoning vs spicy. Well wrong....It's awful. I joined a support group and boy do others really have it bad.  So yes I do have a mild case in relation to them but it still sucks & is really hard. I just have Crohn's. 

I'm going to try a couple new things this week.  Auntie Shelly and I will head out for an evening stroll along the course and I'm also going to head to the track.  No not to become the oldest woman's sprinter in the next summer Olympics, just to walk. A wise man recommended I walk the track & I feel I'm in a good space to now give it a try.  Put on my headphones and walk round & round to some good music...my version of sweating to the oldies. I've noticed that my leg pain seems to be better the more I exercise. My bike rides helped with the pain but the numbness is never gone. 3 weeks ago I thought I'd never get to this point & now here I am. Training my mind & body is 64.7% of the battle, maybe 65%!

I took a look at my blog viewer records and it seems I'm global.  Canada, USA, France, Russia, New Zealand, Mexico, South Africa, UK, Germany, Netherlands & Poland.  Thank you all so much for reading. You help me by following and I hope I help you in someway too. Hopefully you laugh at my humour and if you're someone dealing with or affected by cancer in any way, I hope I gave you what you needed. 

My 30's wish list might not have come true, but I wouldn't change a thing. I have no doubt that I'll rock my 40's and I won't have to pay a babysitter to do it!




Thursday, May 21, 2015

Late or early?

It's 330am.  I call this late night but for some it's early morning. It's sunrise to my friends & family back East, but for me it's late & I hope to grab some shut eye before the sun peeks through my blinds & pale pink curtains.  I haven't taken or filled any sleeping medications in quite some time, but just found myself sitting on my bathroom floor looking through drawers & pill bottles in hopes of help.

When I can't fall asleep I find writing a great escape and therapy.  As much as I love Simba he struggles staying up late with me and migrates to the couch & let's be real...he's a cat. Although such habits are often echoed in conversations with my friends about their husbands, Simba doesn't snore but he does drool!  Here's hoping by the time I finish writing this blog I'll have found some clarity & that this pill kicks in so I can sleep through the sunlight. 

I know I'm struggling with a few things right now, so reached out and spending Thursday night with a bestie.  Her husband and son are setting off for the weekend leaving her home alone with her newborn daughter. I'm thinking we both could use someone to talk with, and to add icing onto the imaginary angel food cake, she's also my hair stylist so a new doo will come about. The doo will most likely reveal itself when I sit in the magic chair.  

In no actual way have I been deserted in this journey but this last while it's how I felt.  As much as I understand the why's I don't like it.  I'm the one with an irregular life right now, not my friends & family, but with that comes so much loneliness. I just want someone to come sit and talk with me about what's new with their lives or favourite TV shows..honestly anything.  Someone to come and sit at the beach with me for a few hours or one of the many other options.  FaceTime...love me some FT, just warn me so I'll have lipstick on LOL

I must be honest and say this is the roughest emotionally I've been since the day I was diagnosed.  As much as I'd like to say I can continue to battle through Cancer & Crohn's alone I just can't.  My next PET scan isn't scheduled until June 24. This is a follow up to my March scan to hopefully (knock on wood) say no cancer is showing & I'm still cancer free. Back to the alone comment, I'm not alone. My family lives next door & 5 floors up, but think we get tired of singing Kumbaya together....well not literally, but you get my drift.  I know y'all are there for me but you're not mind readers I just have to ask for help. 

So I'd like to officially open a casting call for PWLC..people who love Carly.  PWLC is this years hit coming to ya live from Springs Blvd!  What role would you like?! Maybe a telephone caller, a visitor, a movie date, dinner date, person to hit golf balls with or maybe even sleepover girl.  Perhaps a cute date with kids via FaceTime.  The opportunities are endless and have no doubt these roles will be taken on with passion & grace. When I'm able to come to you I will, but not every day is a travel day.  Turbulence is more than likely on Air Carly.  

See this writing does work, I'm already feeling less alone and I haven't even heard from you or seen you yet. I'm just confident you'll hear my casting call and be the best at what ever role you choose you have time for.  First & foremost you are my friend and I thank you. I've got your back too whenever you need me.




Tuesday, May 19, 2015

2013 or 2015?

Last I checked I was sick mid 2014 continuing on in to 2015, yet most of the assistance programs I apply for are based on 2013s income.  How does this make any sense?  I've been on disability since last year why would this not apply? 

I was on the phone with Pharmacare today as I thought I was just shy of my high deductible based on my 2013 income.  I asked how I could get things applied to the now vs the past and she said there's loads of paperwork but it's on the way.  And that high deductible I thought I was about to reach, well it's even further away as 2 of my 3 medications aren't covered.  This day just got better ... I might have shed a tear and might need to get an ice cream to feel better...ice cream is magic right?

For some reason I've let these stressful times get to me and this week I bit my nails.  I have no doubt I'll grow them back, but silly that I let that habit back in to my life.  I won't ever let smoking back in so better a slip with my nails than with a cigarette. 

Every time I think I'm just getting over a hump another one comes right behind it. I can't seem to gain an inch without giving two.  I hate being the "why me" girl but lately I find myself saying it often.  Why can't I be stronger, Why do I have Crohn's, Why can't I be happier, Why did I get cancer.  Then I tell myself to shrug it off and move on but moving on is harder than anything I've ever had to do.  I keep reminding myself this is all happening for a reason and to have faith. 

Saturday mom, dad & I headed out on the boat overnight. Being up Indian Arm taking in the crisp air & beautiful scenery always puts a smile on my face. How lucky am I to have cool parents to spend time with & to live in such a beautiful place. I loaded a video & pictures that you can see on my blog but not by the email subscription. 

May 19th was day 70 being cancer free, so as frustrated as I may be, that's a great celebration.  It's also uncle Bruce's 70th birthday and he's been in my corner this whole journey. Great to share this number with you, but tomorrow you're still 70 & I'll be 71 LOL 

This Sunday I get together with some of my dearest friends for a photo shoot celebrating our 40th birthdays. We did the same for our 30th and here we are ten years later. No matter how bad things get, seeing their faces on Sunday will remind me to keep fighting. 




Wednesday, May 13, 2015

PJs all day

I was in my PJ's all day today. In the past being in my PJ's meant I was home relaxing with my feet up.  Unfortunately today was not that kind of day.  I had a flare or what I call an episode.  Flare makes me invision myself abandoned at sea....or a dramatic dancer...and this is so far from that!  Only reason I was in my PJ's is because I could hardly stand in order to change. 

Crohn's disease is almost worse than my cancer.  It's going to be with me for the rest of my life & turns on with no notice. Of course it's not terminal like my cancer was and still could be, but it hurts like radiation did, a pain that makes you cry.  Some days I'm riding high and then I have days like today where I'm low.  

As much as I'm angry I'm also intrigued. Seems everyday I read something via my support group or I get on google.  Usually I steer clear of Dr. Google but for Crohn's I visit him/her often.  Fatigue seems to bother most people no matter their severity of the disease and this rings true for me. Doesn't mean I sleep all day, just means when I'm out & about it usually wears me out and takes me a while to get back.  I was out most of Monday and didn't get my proper foods so this could perhaps be a contributing factor.  However I've got to do things, I can't become a hermit. It's my price it seems. 

Like I said I'm intrigued.... How can I control this, even if just a little.  The dietician I met with last week gave me some new ideas. Nothing different than Dr Google might have come up with, but she was a live real person and talking with someone who's there to understand really helps.  I felt so much better when I left my hour session, she might as well been a psychologist. She gave me some new ideas for food as my usual things have become boring and I'm to eat 6 small meals a day.  Large meals serve me no good so please don't ask me to an all you can eat buffett. 

My weight has been down & up throughout my illness but according to my last Dr visit I've lost 11 lbs. I don't really feel it but it must have happened. I had her check twice, as I lost it all in 3 weeks which is a bit drastic. Extreme weight loss can be a negative sign, however weight loss with proper diet & exercise is fine. Mango and I will go for a 3rd ride this week, maybe even a 4th. A lot of you asked how I've managed on the bike and so far so good. It's a fairly padded seat and a cruiser style 7 speed so I'm not hunched over.  I'll post a Mango selfie next time she's out. 

It's now 3:30am on Wednesday and I'm finally feeling like I can sleep. Simba's already sleeping on the couch as I think he hates me keeping him up...the nerve!  Goodnight, good morning, or good evening...whenever you're reading this!  Thanks for reading and for taking a ride with me.  Oh & since I'm off to bed so late hold all calls to the afternoon!




Monday, May 11, 2015

F*ck Cancer

This terrible disease doesn't choose its victims in a way that makes sense to me. Smokers, non-smokers, druggies or not, fit or fat....anyone can get cancer.  I don't wish illness upon the harshest of criminals but I struggle as to why my dear friends mother was chosen.  A mother of 3 and grandmother of 4, she was doing no harm to anyone yet her life sadly ended.  RIP Eleanor, you will be missed but just know I'll continue to be a dear friend to your daughter and love your granddaughters as long as I'm allowed.  

Approaching the age of 40 I'm not fearful of finding a wrinkle or maybe a grey hair, I fear saying goodbye to those I love and supporting my friends as they do the same.  Of course we know life must come to an end, but it's always hardest for those left behind.  No matter your religion or spiritual belief, I think we all like to imagine those who passed away running fancy free and watching us where ever they may be.  I like to believe my grandparents look down on me one way or another, or I'm just a crazy lady who talks to fresh air! "Grandma, it's me Carly..."

With everything I've been through I find myself reflecting and figuring out what's important to me, my happiness, my future.  I've been looking in to continuing my education to allow me to thrive in a career where I can give back and make a living all at the same time.  This is not a decision that comes easy as there are some great programs out there, but know I'll find my perfect fit. If I can't be a supermodel guess I must figure out the next best thing!

I've managed to start bike riding for some much needed exercise since the pool trial didn't go so well. One step at a time but hallelujah that I'm still taking steps in this thing called life!  




PS- check this blog on its site vs the email so you can see pictures. I've heard lots of you didn't know about this. You've missed a lot of pics!

Tuesday, May 5, 2015

Hello again!

Hello again ..... I'm sorry for not writing this last while. I've had texts and emails from lots of you giving me a hard time for neglecting my blog.  Fear not my loves, it was just temporary. There are many reasons as to why I didn't make time to write, but really I just needed to escape.  I needed a break from being sick, some R&R, some Carly time.

I had a lovely time visiting with Amber, Emese and Shauna who are my Calgary BFFs. I won't bore you with silly details but I just feel so blessed to have these ladies in my life. I lived in Calgary for 8 years and have nothing but good things to say of my time there & the city itself. Over those 8 years I made some great friends and memories, with these 3 being of the strongest.  With amazing friends in YVR & YYC I fear choosing a wedding party when I marry my not-yet found prince. I just know I won't have a destination wedding as my dad would not be pleased (he hates away weddings). 

I guess the biggest news with me is that I got a tattoo.  It's on my left wrist and reads conquer with the Q being the cancer symbol. If you go to my blog on your computer vs email notification you can see a photo.  It looks bigger in the photo than real life, but it's not teeny tiny. Width of my thumb and length just shy of my iPhone.  I never thought I'd be a person with a tattoo but this cancer journey has been so real and personal for me, that I want a forever memory reminding me of my strength.  I've already had a couple moments where I looked at my wrist and it gave me peace in a tough moment. That's exactly what it's for.  

I head to the Cancer Agency tomorrow (Wednesday) for my monthly check up.  I feel pretty good considering where I was at this time last year.  Last year I had no clue what was wrong, I was just in pain....excruciating pain.  I later found out my pain was caused by my tumour aka Big Kahuna, and that it had been growing as I waited for my specialist appointment. I'd visited the ER twice and they misdiagnosed me & I left in tears with no result in sight. Be your own advocate, this is my first set of advice to anyone struggling with illness.  Doesn't mean you have to me mean, just means you need your voice to be heard. I was way too passive. My only regret but no need to dwell, it's over now. 

Living & dealing with Crohn's Disease has challenges but think I'm getting a good hold on the do's and dont's. Learning which foods are bad for me is the biggest struggle, so I joined a support group to hear & learn from other people's stories. It's also shown me how poorly others are doing in their battles.  I'm a 3 on a scale of 10 compared to some of them.  I pray that my cancer stays away and that I don't end up with the colostomy bag (Winnie).  With cancer & Crohn's my surgery would be massive & life changing, radiation has changed me in ways you don't want to know. My body would be tested like never before as it wouldn't be a routine colostomy surgery. But we're not there so need not worry, but it is a possibility so must stay real. 

While at the Cancer Agency I'll also be meeting with a dietician. I'm really excited for this!  The trial & error with food has gotten extremely old. I hate to eat in fear of how I'll feel. What we consider bad foods don't seem to bother me whereas raw vegetables make me extremely ill. Insight is gladly welcomed. 

Thanks so much for continuing to support & love me through this bumpy road. Your support & strength really do make me feel better & have more courage. 

Even though my beloved Canucks are out of the race, I'm just starting my playoffs!