Thursday, February 21, 2019

1...again

1 or one...whichever way you spell it, it’s the start of something new.  It’s a number symbolizing firsts or 1st’s. One year old, first steps, one hit wonder, first date. So many things happen usually not to happen again, firsts become 2nds. When I beat cancer for the first time and celebrated my 1 year cancer free, otherwise known as NED (no evidence of disease), I thought that would be the only time.  Little did I know I would repeat that first again.

March 11, 2015 and February 16, 2018 are my 1st’s and at the same time my 2nd’s.  I remember that day in 2015 like it was yesterday. My body still so weak and my skin the shade of yellow, but my cancer was gone. I was so excited and so inspired with life it was infectious. When my cancer came back in 2017 I didn’t know how I could go through it all over again.  Perhaps because my treatment plans were different each time, more physically severe the second, I handled things differently. Honestly you just have to deal as there really is no other choice except death, and this girl was not and is not ready for that. 

One thing I figured out early on is to celebrate milestones big and small.  Many firsts were taken away from me, that had I not done something, I’d feel I was giving in more than overcoming & winning. My 1st time being a mother...taken. My first time going to chemo...given. My first radiation, my 1st surgery, all things I wasn’t expecting to happen in my life.  I could have let the darkness overtake me but I wouldn’t give in.  This doesn’t mean I didn’t have a first day of nausea or a 1st day of depression, but I knew I didn’t want to go back there again. 

For this 1st year cancer free anniversary once again I surrounded myself with loved ones. With some of the most important people in my life. My first friends I made in grade 6 when I started a new school after my 1st  move,  my first cat (had to get Simba in this blog somehow), my 1st friends from my new community.  My people... my tribe, they give me a high anytime I need it, and without them I would not have come this far. There are many of you I didn’t see and you should feel incredibly guilty for not sending me flowers on such a momentous day, LOL I’m totally kidding...or am I, LOL, but had I got you all in one room, it would have been the 1st time I’d have to rent a hall!  There are just too many of you, and I’m so incredibly lucky for so much love and support. 

With all this happiness I also can’t help but think I’ve been here before. I’ve celebrated the 1st and 2nd year cancer free not quite reaching the 3rd. I wouldn’t be a 2 time survivor not having a “will it come back a 3rd time”  thought. Over the past 5 years I have paid more attention to cancer life than anything else, it’s what I know best. It became my job. This point in time of my recovery is an interesting one. I’m not quite done but can see the finish line coming around the corner. I’m very aware that post cancer life is standing by, yelling encouraging words to get me across the finish line. My hernias so big and bothersome, I cope with pain and exhaustion every single day.  How am I to start applying for jobs when I have no idea when surgery is nor how long it’ll take to recover. It’s such a tough time trying to get back at it. I’ve always told people that this stage of recovery is mentally the hardest. What you know is yet again about to change, somehow you need to be ready, however it’s just not that simple. 

My hope for this anniversary is to not have to be here again a third time. I hope for a future career where my experiences can be a benefit and not a deterrent.  To wake up in 5 years seeing how far I’ve come and what a difference I’ve made.  I’ll totally admit it’s a scary time, my future has been changed so much since 2015, but I have faith. I have said it before and will say it again, cancer has changed me and a lot of it for the better. I see things a different way, I handle things differently. Sometimes with empathy and other times I’m extremely blunt.  I just get “it” in a way I never did before.  I’m still the same goofy quirky gal who would likely take her lipstick to a deserted island before she would shoes although they’d be a close second. 

We all have journeys that make us who we are. This is mine & this is me...again...another first, a new 2nd go at life & that is pretty amazing. 

XOXO

C

#carly2conquercancer
#winniethepouch


Tuesday, February 5, 2019

Slumber bowl

This past Sunday was the Super Bowl with the New England Patriots taking on the Los Angeles Rams. Like most other years, there was lots of hype as to who would win and final score predictions.  Little did we know it would be a low scoring game with only one touchdown, with no big reason to get up and cheer or high five your friends. Add in the drama of the half time show artist selection, not being able to see the US commercials in Canada, I was sure glad I stayed home on my couch to watch it. 

Brady and his team taking their 6th title, made me think of myself as a quarterback in my own life’s big game showdowns. I dare count how many surgeries I’ve been sedated for, chemotherapy and radiation, hyperbaric treatments, ostomy life and the dreaded hernias. I may not get millions of dollars or trophies for my big wins, but wins nonetheless. Oh wait I also don’t have a super model partner, better stop this comparison now while I can lol 

I’m hoping hernia surgery is getting close now that we’re in February. I was asked to get bloodwork done which has to be done close to surgery booking. That’s a great sign but also makes me nervous. Minus a recent trip to the ER after a painful blockage passing, I haven’t had major surgery or hospital visits in a while. When you’re in the illness trenches you just go in head up, but feeling a bit out of the trench right now, my head a little shook this time. But in true quarterback fashion I’ll be ready to go on game day. 

I’ve learned of some great health conferences coming up this year. The first is for social media health advocates this April in Dallas. If I’m selected the travel and accommodation costs are covered which makes it possible for me to attend.  I think it would be so rewarding to be surrounded by other health advocates from all medical rhelms.  The other is in Philadelphia in August but no costs covered.  This conference purely for ostomates, an expensive trip and being on disability this last year, I don’t know if I can swing it. Gosh I’d so like to attend though!   Some of my ostomy friends have attended and said it’s super rewarding and inspiring. 

Not much else is new and exciting. I’ve got some hockey tickets c/o Santa (aka my dad) next week.  Canucks vs San Jose which should be a great game. The weather has been amazing on the West Coast. We had a dusting of snow the other day but it was so light it didn’t stick.  Today is a beautiful sunny day, a bit chilly with a temperature of 1c. Can’t complain when I hear of what the East deals with. I lived in Calgary for 8 years so put in my time with cold weather, although it was usually sunny even if freezing. Oh wait one exciting thing, I’m going to the Justin Timberlake concert next week and can’t wait. My biggest fear was that hernia surgery would stop me from going but it looks like all will be fine. I’ll definitely be bringing my 🎶sexy back🎶 Thursday night. 

I continue to stay upbeat, hanging with friends on Saturdays, cooking most days & snuggling with Simba. His old age has brought hearing loss and a lot of meowing. He’s either got a thyroid or diabetes condition, so will have to cross the vet bridge soon enough. I’m not thinking he’s dying, but the meowing for treats all day could make me insane!  Why I yell “be quiet” to a deaf cat I just don’t know but I do.  Lol 

My real health Super Bowl will be on the 16th. It marks my 1 year cancer free anniversary and birth of  my colostomy Winnie the Pouch. Being rid of cancer a second time is amazing, but Winnie has helped me so much vs not having her the first time round. Anxiety mostly gone, completely open as to my ostomy life, I generally feel total acceptance from people I meet. A pouch is a lot easier than a step kid or a crazy ex husband!  I have heard stories from other ostomates who struggle with acceptance, but I haven’t felt that way. I’m proud and better with her so educate anyone who has questions. Because I’m confident no problems have come up, and if they did I’d just toss them aside like the Patriots do their opponents. 

May have some interceptions here and there, but my quarterback life is getting more yards each and every day!

XOXO

C

#carly2conquercancer
#winniethepouch




Tuesday, January 8, 2019

Can you hear me now?

The phrase ‘can you hear me now’ is famous from Verizon cellular commercials in the early 2000’s. They were catchy and somehow everyone used that slogan and still do to this day. It got me to thinking a while back, as I felt my doctors weren’t hearing me, so one morning I woke up and said they will hear me now!

It’s been a while since my last blog entry, I was in a sad place. Since then I’ve taken some steps and have felt a coasting like pace, often not feeling blog entry type inspiration when in that zone.  I’ve had so many of you reach out to me wondering why no writing, so I heard you and here we are with you as my inspiration. Can you hear me now?

Coping with the depression was hard. I’ve never felt so low in my 43 years and then “fine” a while later only to feel low again. Like a teeter totter in the school play ground. Sometimes you end up sitting up high for a bit when your pal refuses to let you down, and sometimes the surprise when you come crashing down as they get off their seat. I cried so much that the skin around my eyes was raw. I recognized I needed help and booked a therapy session. To no surprise I cried the entire session but felt so much better as I drove home. I had released emotions that crept up on me with someone who could handle it. She was great and I will be seeing her again. 

I kept calling my doctors and set appointments begging them to help me with my hernias. Again I cried. No more stoic behaviour, they needed to know I was in a bad place. My family called and even emailed saying exactly what I said in person. Can you hear me now doc?  Not too long later I received a call from my hernia doctors office saying a cancellation came around and could I come in for a consult a few days later. You know I did. Nice doctor who said “wow you got some big hernias here, how come I’m just seeing you now?”  I swear I saw myself jumping across the table shaking him, but it was just a vision, although I coulda clocked him one!  I left the appointment being told that the larger of the 2 (on my right side), will be repaired in February or March and the other sometime thereafter. Progress made. Keep calling Carly. 

The holidays were spent with family and overall I did well. I often get really bad cramps after eating which brought me to tears (surprise) but I got over it. Basically my hernias are in the way so much that when output travels to Winnie it hurts really bad. When I’m alone or in a smaller setting I deal with it, but when it’s Christmas dinner or bigger situation it frustrates me. I get down because I don’t want to be the sick girl anymore but alas I still am, just on a different level. 

I continue to use my Instagram channel (Ostomate and the City) to bring forth awareness and connect with others who are like me. It’s pretty amazing how many new friends I’ve made without ever meeting them in the flesh. We write each other, we do live chats, we celebrate wins but also recognize struggles. Sometimes social media can take some hard turns but as of now it’s only done wonders for me to connect with ostomates within a great community. I do need to work more with my vlogging but haven’t found it as much my niche as this blog and Instagram.  We shall see what comes forth with it in 2019. 

Doing the best I can to not be in total lockdown, but also respecting my body and the struggles it still has. When I feel good I go out, when I feel bad I stay home, usually sleeping or watching movies/TV. If you need a suggestion of what to watch just ask. I’m mostly in to comedies and crime drama documentaries as they cheer me up. Ones funny and the other makes me appreciate I’m not am addict or a serial killer ha ha ha

Oh 2019 I so hope you can hear me now. All you really need to hear is “I’M DONE”. May this year be a good one for you, for me, for my family and my friends. Winnie will be 1 in February which also marks 1 year cancer free so I may do a little something. I did celebrate these milestones during my previous battle but never made it past 2 years, so here’s to hoping that I’ll exceed that timeline and many other hopes and dreams. Love to you all! 

XOXO

C

#carly2conquercancer
#winniethepouch

Thursday, December 6, 2018

Start the car!

Have you seen the IKEA commercial when the lady runs out yelling “start the car”?  It’s a catchy advert that I’ve jokingly used many times. Lately I literally want to start my car and drive with no particular destination in mind, but instead to just get far far away. However we all know you can’t run away from your problems, they always run with you if not faster. 

Battling and beating cancer once before in 2014/15, I felt I’d do the same upon my 2nd diagnosis in 2017/18 and it started out that way. I knew my treatment plan and accepted it but now 9 months post surgery find myself in a tough place. I’ve gently used the word depression in previous posts but know now I am absolutely struggling with depression. Had you asked me in June where I’d be today I’d have told you the complete opposite. I was a warrior princess kicking cancers ass and accepting my new reality. I may have been a little naive in what that reality really was. 

My hernias popped up mid recovery and things quickly changed. At first I thought I had just one and that it was small, but soon discovered via CT scan that in fact there were two. One in particular is very large and I’m not exaggerating when I tell you it’s the size of a volleyball.  My surgery may have kept me alive and cancer free however it’s changed my body dramatically. My ostomy is the least of my concerns as I feel better with Winnie than without her, but when you add in the reconstruction and hernias it’s overwhelming. I’m not feeling like the woman I once was nor the woman I want to be and it’s a big struggle. I have things to do along this recovery road to get me there and it’s a lot to take in. 

I often struggle with cramping when Winnie does her thing and this could be a result of the hernia resting on or blocking my intestine. Obviously I don’t want to have the awful cramping pain so food then comes in to play. If I eat too much roughage I pay for it but it’s healthier. If I eat less or what’s considered less healthy I feel better. Like seriously?  Yet again I can’t get a break. No joke my spring mix may spoil so please come over and eat it!

I’ve been crying a lot lately to the point that my eyes hurt.  Over the past 3 months I’ve seen multiple doctors but felt discarded, so today when I met with my amazing oncologist I let it all out. When she walked in I was already emotional talking with a clerk I know quite well and welcomed her to the gong show.  Where’s the gong drum when you need it!  Y’all don’t need to know exactly what was said & what was done but just know it was intense and emotional .

I do have some positive news in that a January consult with a hernia surgeon has been booked.  I don’t know when I’ll have my final recon surgery but have filled out the admission papers so waiting on the call. I’m seeking therapy which I haven’t done up until now, not because I was embarrassed but because at the time didn’t need it. However now I do. Half the battle is to recognize so my eyes are wide open, and not just because they’re sore!

I don’t think an IKEA shopping spree will help but a nice set of nails, cute ostomy bag covers made by my aunt and possibly some wine could solve a few issues. Christmas with my family, texts about your crazy lives and snuggles with my deaf cat will have to do for now.  In true Carly fashion I will forge forward knowing it will be ok but man it sure ain’t an easy road, speed bumps ahead. 

XOXO

C

#carly2conquercancer
#winniethepouch

Sunday, November 18, 2018

Choo choo

A locomotive goes 🎶choo choo🎶 and I’ve often thought of myself like a train. My way of choo-choo’ing is by remaining positive and by taking the wins when they come. However there are many railway tracks to travel and sometimes a derailment happens. I feel derailed right now.

I’m so darn angry and with that comes sadness.  If I’m being completely honest with myself and with you I’m an emotional wreck. I feel like I’ve been hit by a train, like my caboose stayed at one station while the rest of my train at another.  As a little girl I heard the tale about the “train that could” he just kept trying and eventually did. But for crying out loud I’m so sick of trying. If I was to draw myself as a cartoon train I’d be the long eyelash lipstick wearing train with tears in her big brown eyes. I just can’t stop crying tonight.

I’ve had f-ing cancer twice. It’s made me infertille. I have a colostomy. I’ve had parts rebuilt. I have hernias. I’m not ok. Throughout all my treatments I’ve lost a minimal amount of weight, I didn’t even get a revenge body FFS!  A breast cancer survivor qualifies for reconstruction so why the heck can’t I qualify for, or shall I say be approved for, a goddam tummy tuck. No I was not a skinny mini before this all started however my hernias have really done a number on me. I’m so goddam mad that my body has been through so much that I’m scared I’m now falling in to a depression. I’ve never felt so down. As much as I’m an advocate and the joy it brings me in doing so, it’s just not enough. Perhaps I’m just feeling things a bit more than usual tonight as yesterday marked 9 months since surgery, I honestly don’t know.

I want oh so much to be the survivor who does amazing things but any time I start to feel that way I feel like I’m getting slapped in the face over & over again. I sit here and think what can I do to resolve this but it’s just not that easy.  I’m in constant discomfort and pain and just can’t seem to unlock the path to help me be that survivor. I hate life after cancer, it’s so much harder than life during cancer which is crazy to say. I’m at the point that I feel I need strict rules and regulations to see any sort of solution because without them I just don’t know how I’ll overcome this hurdle.

For 4 years I’ve been trying my best to be positive and to look on the bright side, but if I had a towel right now I’d toss it in the ring. I won’t give up because it’s not in my DNA, however I understand struggle like never before. Every single one of us has a limit...seems I’ve just hit mine. I’m done being strong so maybe it’s time to be angry and vengeful...I really don’t know but I got to figure this out.

People are worse off...this too shall pass...others have been through worse, all things I tell myself when I’m in a dark spot. As much as it has helped in the past it just isn’t this time.  I’ve been through extreme agony and it’s ok to acknowledge it. I begged for mercy after chemo & radiation. I’m sick of begging for mercy which is where I find myself physically today. It’s now affecting my psyche which hasn’t really happened before.

I’m left with this thought. Trains can be repaired after derailment right?  So how can I get myself repaired physically and emotionally because goddam I hate this space I’m in.  In saying all this I know I’m strong, that I’m a fighter and that I’ll conduct my train in killer cute overalls with a bold red lip. Just sucks I’ve had so many accidents along the way.  Choo-frickin-hoo.

XOXO

C

#carly2conquercancer
#winniethepouch


Tuesday, November 6, 2018

Ostomate and the City

Carrie, Miranda, Charlotte & Samantha are a cast of names you most likely know.  The TV show ‘Sex and the City’ first aired in 1998 when I was 23 years old and summed up in 2004. I didn’t watch it religiously straight away but later as I approached 30 I bought the DVD collection binging it for months. My late 20’s and early 30’s were spent living in Calgary as it was a booming young vibrant city in Canada at that time. My girlfriends and I were a lot like them although we didn’t wear Manolo Blahniks but we did hail yellow cabs!

I’ve been branching out on Instagram and YouTube with other cancer warriors and ostomates so decided I needed a fitting name. Most people I’ve discovered have the word ostomy, stoma or cancer in their handle and a name came to me after watching another feed. It just clicked...Ostomate and the City!  I haden’t thought of this show and it’s amaxing characters in quite some time but it just popped in to my thoughts.   How would these ladies handle being a 2 time cancer survivor and ostomate for life?  All I could think is that they’d own it. My YouTube and Instagram now carry this name. 

Latest happenings for me still involves waiting. I’m waiting to hear when I’ll have my final plastics surgery to smooth out the skin that replaced where my tumour once was. Still no word as to when my massive hernias will be surgically fixed and as a result of this fix my stoma will change. Fitting that just as I get Winnie stable I’ll have to go through all my bag fits and tricks to maintain bag longevity all over again. But honestly the changing stoma is the least of my worries as I’m so darn uncomfortable.  I’ve been going to the ostomy clinic on a weekly or bi-weekly basis since surgery nearly 9 months ago and my nurse now recommends I come in as needed.  I was elated to hear she felt I’m self sufficient enough and although I’ll miss seeing them on the regular, I walked out super happy.

I had a good cry on the phone with my brother that night even after such great news. Earlier that day I had a slight fall in the shower and once I settled in for the night my hernias were causing me a lot of pain. I took some pain pills and while changing in to my pjs saw my hernias in the mirror along with Winnie and my scar. I just started crying. Between the pain and the image I got rattled. I’m as upbeat as anyone can really be after so much pain and physical change, but it just all kinda sat on my shoulders at that moment looking in the mirror.  The next day I called my doctors office and was told the surgeons name whom I’ve been referred to for my hernias. Unfortunately I’m on a waiting list but I called and left a message saying I’m struggling and would like to be seen.  Maybe I’m being too calm and not really expressing to my doctors how bad I really feel. I’ve been in many worse medical situations that I probably hold my current state to a lower level. They’re huge. They need to go. 

Making acquaintances with others like me is really empowering and I’ve already had some great moments and feedback. Numerous people from all over the world have messaged me saying how they relate or how I’ve helped them. They too have helped me. Not one persons story is the exact same, however the end result oh so close.  Only those who live with cancer or an ostomy really comprehend so I need these people in my life to help me and my purpose. 

Carrie was a writer and this blog has now exceeded 99,000 views.  Vlogging is new to me and like to think she would have done the same had it been 2018. Miranda almost always single eventually settling down later in life which seems to be the way I’m headed. Charlotte always a great hostess and I love to entertain. Samantha survived breast cancer. Had she had vulvar cancer I jokingly say she probably would have ended her life ha ha ha.

From now on out I’m chanelling these 4 characters, or ladies, because they seem so real to me.  I need to think of what  they would wear, what would they say, what they would do a heck of a lot more. Although they’re fictional women they were strong and I related to them, still do.  Hopefully my name will relate to others and I’ll meet some more empowering women (and men) throughout  this next chapter. 

XOXO

C

#carly2conquercancer
#winniethepouch

Tuesday, October 16, 2018

Inspiration

Definition: 

a: a divine influence or action on a person believed to qualify him or her to receive and communicate sacred revelation 

Or 

b: the action or power of moving the intellect or emotions 

My parents dear friend who’s beat cancer, perfect strangers messaging me on social media and an old coworkers father having colostomy surgery 20 days ago, lately I’m feeling inspired.  Inspired because they’ve shared with me some of their struggles and wins but also because they’ve come to me for comfort. I’m obviously not a doctor but when you go through illness only people whose journeys have been similar really get it.  I’ve learnt lessons from every person I’ve spoken with and seems I’m helping them learn too. This is why I continue to bring forth awareness by sharing. It’s way easier to just close the book and start a new story. But are our stories ever really over?  Not really, we just write a new chapter. 

A lot of you have told me I need to start vlogging, I heard you and have created a channel on YouTube. No posts as of yet as I’m trying to sort a few things out, but after checking out other channels have a pretty good idea of my approach. Just gonna shoot the 💩 with you. (Emoji seems fitting). No scripts, no graphics, just the moments thoughts...just gonna be me. I usually do better on the fly anyways avoiding overthinking and remain authentic. I’ll of course speak of cancer, ostomy life, hockey and probably some of my makeup favs too. So far it’s just under my name but if you have some creative name idea please shoot them my way. Carly’s Collage, CancerColostomyLife, Life with Winnie..,I really don’t have a clue as of yet  (those were on the fly FYI!). For those of you wondering...no I won’t stop writing. I love it, it’s my therapy.  Please subscribe below to help me build my followers & have some fun with me.

https://www.youtube.com/channel/UCkc1uQm3RlXS5iG5FQxahQA

This week I have a lot going on. Two of those things are seeing my plastic surgeon and attending an Ostomy social/meeting for 20-50 year olds. Plastics will involve hearing how my healing is going and how it’ll end. Last we spoke I’ll need one more surgery but it’s no where near as extensive as before. From all accounts I’ve heard the social is quite empowering. Keynote speakers like surgeons, ostomates themselves and who knows what else. No doubt each social will be different and I look forward to meeting some great people in my own city. I’ve met some great ones thus far and can’t wait to ad more people to my ostomy squad!

Still no word as to my umbilical hernia repair or who the doctor will be. I manage as they aren’t painful but huge and in the way.  Because of their size I’m very uncomfortable and can’t get in to my jeans but you know how much I love dresses so still have style. When surgery does come about I’ve been told by my Ostomy nurses that my stoma will change. This means I’ll have to start over with new fits and routines. I just started going steady with Coloplast bag 16757 but looks like Winnie gets a new bag to date and wear her cute outfits for! 

The greatest compliment I continue to hear is how upbeat and happy I’ve been and continue to be. Just yesterday 2 young women currently going though a similar journey messaged me. I was so honoured they came across my posts and felt they could share and ask me for advice. That’s exactly why I continue to write, post on Instagram and soon to vlog.  It’s so easy to pack our suitcase and fly off with a one way ticket. I’m more a return ticket kind of gal and inspiration is my gas. 

XOXO

C

#carly2conquercancer
#winniethepouch 



1...again

1 or one...whichever way you spell it, it’s the start of something new.  It’s a number symbolizing firsts or 1st’s. One year old, first step...