my story.

Time flies when your having fun or… sits still for the best or possibly worst news of your life.

I’m an emotional wreck.

It’s been a crazy year.

Life has been up… life has been down.

But.. I’m happy to report that life is back up and rising to the highest of highs.

It is with pure joy that I want to share with the world that my most recent PET scan and Biopsy came back as negative for malignancy. This is by far the best news I have ever received in my life to date. I feel like I won the lottery of life back. I think that I tried my best to keep positive during treatment but I would be lying if it didn’t cross my mind that this might be the start of a long fight and the recent news has lifted a huge weight off of our shoulders.

This is a happy day. I go for more scans in 3 months to check on things again as they will keep a very close on me for a while but this is the best news I could have asked for.

In amongst all of the madness in the last year we decided to close Splendido and completely renovate and build a new restaurant together. Last week Victor and I opened that new venture together and it is another proud moment in my life where I truly feel like we took a really hard, tough time in our lives and modified and made changes according to what we needed. What I needed and what our family needed. The decision did not come easily. Although I truly feel like we have built the restaurant of our dreams it came with very tough days of decision making of letting go of old dreams and believing in new ones. If you would have asked me last year where we would have been in March 2016 I don’t think I could have dreamt a better picture. Truly. However, if you would have asked me this time last year where I thought I would be in July 2015 I would not have imagined a more horrific place to be. The roller coaster of emotions is something that is unexplainable and in the last year has been all very consuming.

As comforting as being given the green light there is a bit of sadness with the lose of heartache. You know the part of a bad breakup where you realize that today is the day where your sad story exists no longer and you have to get out of bed and face the world head on. It’s bitter sweet. I’ve been given the best news of my life but I’d be lying if I didn’t say I won’t miss the slowness of life and sweet time with my family that came along with me being in treatment & also starting a new family. Time. Strangely we had a lot of it. The green light gives you the ok to be busy again and there was a certain sweetness to the quiet life that existed during the time when I was in treatment and being a new mom. So I have to remind myself to take time out of this crazy life.

So where do I go to find comfort? I find myself at the hospital. True story. Strangely feeling comfort among the stark white walls, hospital staff and the familiarity of people in need. A hospital lends nice to small chat, no chat or just a light smile that gives comfort to your broken heart. I heard this happens.  I’ve been really wanting to write and my mind is so busy that I can’t seem to get anything down to the page. So many people say, wow – I don’t know how you do it, your so busy and now opening a new restaurant, that’s nuts!  But… ironically it’s necessary.  Vic and I are both creative souls that are always on the rise with new ideas – it is what fuels our souls so for us this makes total sense in amongst the Kaos to create a Kaos that you created.  Kaos you create is different from the uncontrollable ones like… let’s say Cancer.  There are so many things in life that you don’t have control over so we try to create exciting new projects that we can contribute to and this new restaurant is going to be such a beautiful space for our girls to grow up in, a second home with “tasty, delicious, food!” shared with our friends and family.

I’m slowly starting to feel like myself.  This self is of course a newer version of Nikki, one with a couple more stories and tales to tell.  I was doing fine until I was recently at my family doctors – you get a new resident on his first day and he goes through your file from top to bottom of your entire medical history and now that story is getting long.

Doctor: How do you generally feel overall with your health?

Me: Hmm… hard to answer.

Doctor: Any major surgery?

Me: Yes… a few actually.

Doctor:  Any pregnancies?

Me: Yes… a couple.

Doctor:  Any babies?

Me: Yes… 2 beautiful girls.

Doctor: Any allergies?

Me: Yes… most def sensitive to all drugs and some make me projectile puke across the room.

Doctor: I see here in your chart that you recently went through stage 2b cervical cancer… wow, your baby was only 2months old and wow, wow… you have another one, she’s just 2years old? Wow, you didn’t waste any time did you! Hahaha!  Ok… (skim’s the chart) it looks like you had chemotheraphy and radiation followed by in hospital brachytherapy.  How are you feeling? It must have been so hard being away from your children during treatment, how are you dealing with it all? How is your husband and family dealing with all of this stress?

Me:  Smile, nod. (not sure how or what to answer first! Maybe they were rhetorical questions?!)

Doctor:  Ok… so, what brings you here today, Mrs. McKean?  Or is it Barry? I see here that your kids last name is Barry?

Me:  It’s Mckean.

Doctor:  Oh oh, ok.

Me:  Well… I’m not sleeping much I’m assuming because of the medical induced menopause.

Doctor:  Have you tried meditation?

Me: (surprised and humbled that he would ask and suggest as typically drugs are just given out.)  Yes, actually I have but it’s still difficult somedays.

Doctor: Ok, well you should cut out all caffeine and any screen time.

Me: Hmm… Going to be difficult because I’m really tired, I love coffee, I own a coffee shop and screen time – well I’m a photographer! Eeekk!

Doctor: Ok, let me prescribe you something new for your sleep.

Me: Sigh

Doctor:  Any other problems?  How are you dealing with the recent good news of your latest scans?  Is there anything else you would like to talk about?

Me:  I haven’t really had time to think about it.  I think I need to go sit in a hospital for an entire day and let it soak in.  Hospitals give me comfort, since I was little they have always provided a place where I feel safe and taken care of.  People also seem to be a little bit more humble at the hospital as I’m assuming a lot of the people here are in health care and the others are patients and friends and family of patients.  People tend to be a little more compassionate here… so I like that.  I like hospitals for providing me with a little bit of “feel good” love.

Doctor:  Well, that’s a first!

Me:  Nah, I’m sure a lot of people do it. Hey, listen… it’s not always the most positive place – I was also ready to tear down the walls of the hospital last time I was in for my internal radiation.

Doctor:  Any other concerns?

Me: Yah, I’m having trouble with my bladder & leakage.

Doctor:  Leakage?  Hmm.. well, you did just have 2 babies and cancer treatment in the pelvic area.  Are you doing your kegels?

Cue… crazy lady now!

Me:  … long pause.  …even longer pause.  No.  No I don’t do kegels.  It’s similar to flossing your teeth.  I could sit here and tell you that I do, but I’d be lying.  I don’t do my kegels and I floss my teeth when corn gets stuck in them.

Doctor:  Fair enough.  Ok, we will refer you to a Urologist.

Me:  Great, thanks.

Once again, I’m back at the hospital – I saw the Urologist today and he went through a similar medical history file with me.  Re-hashing all of the details of my medical history and also giving me strange puppy “I feel sorry for you eyes”.  Nice guy but I couldn’t help but feel like… Jesus, is my story that sad?  I’m not sad so why is everyone projecting their sadness on me and the “I’m sorry for you” looks on me?

I think that’s the toughest part about being diagnosed with the big “C”.  People deal with things in different levels and process things in completely different ways. Even me when I was given my recent results – I didn’t share them with anyone right away. Please note: not even Victor, my person.  I kept the results to myself for a day. Similar to when I found out I was pregnant with Charlotte. The most amazing news but  selfishly wanting to relish in the moment and process the news that will define your immediate future – people may react to them in ways I don’t know how to respond to and I wasn’t ready for that.  Yah sure, I got the most amazing news – I kinda got the lottery of life given back to me…. That’s pretty epic.  And I’m happy, but I’m also extremely emotional.  I have a lot to process in my brain and my new body that is still healing.  People hear great news and they assume everything is A-ok.  And things are. They are more than A-ok, but I’m also terrified that it could come back.  I’d be lying if I didn’t say it and when your around people that have ‘those stories’ we all know it’s possible.  But I also understand that I feel good and I have so many crazy wild dreams to accomplish that I’m ready to dig back into them again. I’ve always believed in dreaming big. Wild open spaces. Unicorns. Raindrops upon clouds that create magical rainbows. Today I am feeling extremely vulnerable and I understand that life is precious and we should try to use every square inch of it whenever possible.

A week ago today we opened the doors to a dream project PIANO PIANO. Piano Piano translates to slowly slowly in Italian, also piano piano va lontano a phrase that Vic loves that translate to slowly slowly we go further. This entire idea of taking time out, similar to FIKA is something that is a sweet reminder in our busy lives.

I feel like we are wearing our hearts on our chest with this one. We have poured every ounce of love, commitment, passion, talent, emotion, dreams into this one thing and I can feel it coming to life and it couldn’t come at a more appropriate time. However, I am also fully aware that we brought to life the kind of space and restaurant that we wanted for ourselves knowing fully and completely that others would be crazy not to want it too. We took an idea that we have been dreaming for a long time, during a very difficult time of our lives and even when we were down we decided to be up… dream big and put our ideas to life. This kind of love and support that we channel for one another is a true gift. Imagine always imagining things… well, we imagine and ‘we do’. We encourage to be ‘do-ers’ because it makes you feel alive and vibrant.

Do. Or do not. There is no try. – yoda.

It’s Victor’s favourite quote.

So if your asking me if I believe in rainbows and unicorns my answer with no hesitation is… absolutely fucking yes. I think the key is that I believe in greatness. I believe that there is greatness in everyone and that there is love and kindness even when life is shitty. We all intend for greatness but we are human and we all have sad stories. Shit happens. We all have a story and some people come with a great resume of bullshit but the best news is the stories that have great triumph and rocky roads. Sometimes life is up. Sometimes life is down. Sometimes… you don’t know if it’s up or down and that’s just the truth. What I know for sure is that we can control some of the greatness in this life and it’s contagious so let’s just all do our part to play a little with life and enjoy one another. Soak up the sun and the next time it rains go splash in a puddle. I dare you and please make sure you tell me about it. My mom said that when I was little and it rained I would say… God was crying for someone that was sad today and my mom would say “yes and the rain will bring out the pretty flowers and hopefully bring a smile to someone’s sad day and worms for fishing”. Well, ain’t that the truth.

Piano Piano. Slowly Slowly. That’s our new thang.

Love,

Nikki

xoxo

PS- Dear Victor,

You are the love of my life and I can’t tell you how proud I am to be by your side. You are my everyday love letter. You are my person and you have shined as a person and as the best human being in the last year to the largest lengths. Your commitment to me and our family and your level of compassion to making change when we needed it will never go unnoticed.

I can’t tell you how much I love you and it’s my life intention to continue to encourage us to wear our hearts on our sleeves. To live our life the way we choose. To dream the biggest dream and to see it unfold infront of our eyes. You are my everything. You, Charlotte and Sofie, our family and our friends. I am feeling like I have new wings and get ready for them to fly again because my dreams and life list has just gotten bigger. I pulled up my old ‘nikki life list’ and thought you might get a kick out of this. I had on my list “open a restaurant” and I kinda thought opening the café was that… but I was wrong. I love that sometimes even you don’t know that your dreams can become bigger than you ever imagined. That’s what life is like with you. It’s the sweetest thing. The best part is that on this life list made (revised when we first met in 2008) the red is what I have “crossed off” and the black is what’s to come. To no surprise since being with you I have crossed off most of the black so that means that it is time to refresh our life list and extend it to even further limits. Check it out…

Happiness – yes

Masai Mara – yes

Write a book – working on it. J

Lived in BC – only for a short bit.

Live in a studio loft artist space – yes

Have a family – yes. Yes. Yes.

Own a Restaurant – Yes. Most definitely yes.

Fresh flower reminders – well… yes. Now everyday because we painted them for our eyes to admire daily.

Have a bulldog – yes

Be honest, love yourself – yes

Enjoy Hawaii again – yes, we got engaged there.

Build a secret garden – yes. Fika.

Health – yes. Thank your lucky stars.

Learn how to play the piano – Well… now that we have a piano I don’t mind if I do.

Adopt a child – 🙂 Now… if we want more babies it might be the only way. That’s one way of turning cancer into the most positive thing that ever happened.

To love and be loved – everyday.

This was my blog (http://nikkileighmckean.blogspot.ca) that I wrote the first time I visited Africa which was a lifetime wish.   We had just started dating and you had just taken over/purchased Splendido. Time flies when your having fun. The ‘Ponycorn’ zebra pic that Tiffany brought to life with a unicorn horn in Piano Piano’s dining room was taken almost to the day that you opened Splendido. The collaboration of our dreams has been brought to life is so many ways, it’s beyond my wildest dreams.

My advice. Write it down. Dream big. Love deeply.

Love,

Nikki

2015, Hello again.

As I write this entry, I have tears streaming down my face.

The truth is I haven’t had much time to myself to write and this time has made me happy because I’ve been a full time mom for the first time in my life (truly full time because our beautiful and missed Nanny Ila returned home to the Philippine’s for 5weeks over the holidays to spend time with her own family) but it has also been some of the most difficult days of my life for so many reasons. A lot of people thought we were crazy to be ‘alone’ during this time but I was looking forward to having the so called normality and I wanted the time with the girls even if I felt tired. I strangely craved the rawness of life and it’s surroundings and was wanting to be left alone to have a little bit of ‘life handed to me’. Life is real, sometimes in the midst of utter chaos you just want a little bit more to feel life at it’s peak. I saw a quote somewhere recently that said “We all get addicted to something that takes away the pain”. Perhaps this was my way of tucking away the facts of life for a little slice of time. For those of you that know me well, you won’t need explanation it would just make sense. It’s the turn on the sad music after a break up and cry attitude, cry and scream at the top of your lungs kinda feeling we are all looking for once in a blue moon. It’s what great music originates from and how the best selling novels are written, sad happy, epic stories – this is where the magic lies.

You want to feel pain, feel pain.

You want to feel sad, feel sad.

You want to feel happy… well, it gets more complicated. You gotta work at that one and when you are ‘happy’ or ‘in your happy place’ and ‘being still’ … it is truly a beautiful thing. It’s also a rarity or so I am learning recently. Loving life has always been what I understood as something that takes work and authentically bringing your best self to the table on a daily basis. It’s a tough order. And… I think my lesson lately is that we can’t expect one’s best self all the time, and I’m really not interested in it. I’m more interested in the most authentic version of yourself – at whatever cost. I’m also very interested in your best version… more so than your worst – but I’m understanding and compassionate to the fact that we are human with all of these emotions running wild with so many moving objects. We must practice to keep our hearts open and that’s a risky task for most.

I can’t explain myself recently – I’m assuming that my hormones are raging wild from the fast paced induced menopause and then there is the plain ol’ fact that I’ve had some time to think about the fact that I was diagnosed with cancer. Truthfully, I am positive about things but it doesn’t deny the fact that cancer kills people, all kinds of people, and that scares the shit out of me because I have no interest in dying.

I think I mentioned this earlier in my posts but life recently seems to happen in slow motion – like watching your own life on a movie screen. You have sudden images of you frolicking in a field of flowers or you running down the seaside barefoot in a beautiful free flowing dress with a kite in hand. All things and people around you that mean anything to you suddenly turn into the best commercial ad you have ever seen and you want to hit ‘replay’ over and over again. I find myself listening in conversations deeply but also so deeply that I can almost see right through the person and I crawl into their body… I close my eyes and I can feel the warmth of their warm blood running smoothly through their existing ‘live’ body. When an overdue hug is exchanged I tend to hold a little longer, taking in the familiar smells and the delicious sound of heartbeats. It life’s romance haunting me it the most endearing way.

So… 2015 has been a beautiful year followed with a couple of bumps in the road and also major change. Victor and I have teamed up to create two of the most beautiful children on this earth and we have struggled to keep our successful businesses with my health. I miss me. My husband misses me and I’m sure my friends and family miss me too. I haven’t been around, I’ve been surviving.

all above photo love from catherine. ❤

The other day, Sofie rolled over and sat up and stared deeply at me and I cried. Not because I’m an emotional mother (well maybe) but because I realized the time frame. Babies tell time, it’s a funny thing. One motion of her rolling and sitting up meant… wow, it’s been almost 6months since I was diagnosed. Sofie was just over 2 months when I was diagnosed with cervical cancer. I’m sure all moms go through a stage around this time when their babies aren’t babies anymore, this is when I think most ladies go a little baby crazy again and their mind let’s them forget the fact that they couldn’t drink champagne on New Years Eve or tie their shoes never mind the endless hours of labour. Babies over time make all the horrible things about pregnancy and labour melt away. My experience with cancer is that it hasn’t had a way of magically melting away yet and all my wishes are for a little more certainty with life, but we all know that the reality of life is not that certain. Life is sweet and we don’t get guarantees.

Tonight marks a most extraordinary night in history in my husbands career and in our lives. After 25 years, Splendido will close it’s doors and we will lay to rest a legendary restaurant.

http://www.theglobeandmail.com/life/food-and-wine/food-trends/chef-victor-barry-closing-splendido-a-toronto-fine-dining-institution/article26999841/

Sigh…

It’s very bitter sweet for us and it didn’t come as an easy decision. Splendido is what I believe to be in the height of it’s time and Victor has taken the food to new levels, tasting menus that will blow your mind and make even the most ordinary person ‘wowed’. I think the hardest and saddest part for me is that I feel a little like I have missed it or perhaps I haven’t been as present as would like to normally be. I’ve been busy, I get it – but I want to be here – fully here. 2015, has brought great achievement both personally and professional for both of us, but it has also come with it’s challenges. I’m a true believer in continuing ones creative self, making dreams come true and continuing the battle of being an individual and I think that we have set aside a little bit of ourselves for each other over the last couple of years.

We have been busy with life, built a beautiful family, grew businesses, struggled with the loss of loved ones and then me diagnosed with cancer in July. We’ve never been people to put life on hold but cancer has a funny way of doing that for you. And as you know, when things get put on hold or put on the back burner and you are unable to ‘bring your best self’ – life suffers and so does the love of what you do.

When I was diagnosed, Victor stopped everything and was fully available to me and the girls. It was non-negotiable for him. Admirable. Unforgettable. Strangely, the time during treatment was some of the most beautiful memories in our relationship – we were present something that in a world that is so fast paced we take for granted. Although we are positive and treatment is ‘doing as it should be’ we are also reminded that sometimes you have to change your dreams and curve the wishlist. Everyday I am blown away by the talent that transpires from Victor and I know like any artist I see the struggle between time between his passion and love of what he does in the kitchen and time with his family. The constant work-life balance is cluster fuck of ideas to anyone you talk to. It means something totally different to everyone and we are trying to make a new definition for our family come the New Year.

Dear Victor,

Today I have a heavy heart for you. I know we are celebrating, and we understand that but it would go unnoticed if we weren’t a bit sad.

So many of our dreams , visions and memories exist within the 4 walls of Splendido and I am so deeply honoured to be your wife and your person. Truly. But I promise you that the magic we have up our sleeves for the new 4 walls will blow your mind and I’m so in love with our constant need for affection from this restaurant. It’s our second home, sometimes our first – so this time we are making it just that… with beautiful people and new modifications. Luxuries.

Babe… I love you more than all the fishes in the sea.

I can’t imagine how emotional tonight will be for you, so many things have happened for you in your life and career and you have created something for people that people will always talk about. I remember one of our first late conversations in Splendido when we first met… It was prob around 3am, we sometimes came over from the Harbord Room to have a night cap because you were 26 and owned ‘Splendido’ and we could. We could have a night cap in an empty restaurant, a beautiful restaurant … what a completely sexy and romantic gesture. ‘This guys a keeper” One of my many questions to you but one that has always stood out the most was – what’s your greatness fear? Your answer was.. “I fear that I won’t be remembered.” Wow… First thought was… Jesus – that’s deep! Then… after a long pause I remember thinking that’s truly a very honest ambitious answer because I had only known you for such a short period of time and already I felt, ‘well that’s impossible.’ You amaze me. Seriously. Such a serious sensitive man that wants a life with meaning, wants a life that has purpose and that I’m assuming brings joy to others enough to be ‘remembered’. I remember what was most impressive at the time was not the ‘fancy restaurant owning at 26’, it was the uncertainty of life mixed with the most confident cocky person I had ever met, what a match.

Your talent. Your demeanor. Your love of life and making it your life mission to do something that would make the people around you proud.   That’s what I admire the most. So… I’m here (we are here) to tell you that your wrong. You have and will continue to build beautiful experiences for people because of your love of what you do. Food that will change the way people think, food that is ‘delicious’, food that is ‘tasty’, and most of all ‘moments’ that create memories that will be remembered because of you. You will be remembered in so many ways for so many reasons. You create space for people to enjoy life, to celebrate and you bring that to the space with your endless effort and extreme talent with what you do, not to mention your remarkable love & commitment to people.

What I love most about all of that, is that all of that comes wherever you go, so as much as it’s about these 4walls of this restaurant, anyone who knows you knows that the experience is not ‘Splendido’ as much as it is Victor Barry. Your ‘spirit, love & passion’ lies within you and not any restaurant. Your best recipe is you, because everything you do is made with love.

So…

Dear 2015,

Goodbye. I’m trying not to think about you and all the pain you have caused. I’m trying to think about all the love you have created. But you brought us heartache. I never want to see you again. I want to go to a place where I dig my naked toes in the warm sandy seaside and feel sunshine on my face and twirl around in my free flowing dress with a kite in my hand and freedom on my shoulders. So be gone my heavy heart.

Goodbye heavy heart, hello new dreams. Please let me be.

Ticklesaurusrex love. “I got you!”

 

 

 

 

28days.

I’m alive! Well… maybe those aren’t the right words, but I apologize for being off the grid. I’ve been shy to write, unsure of how much to tell and what you want to hear.   Just so we are clear… I’m doing ok, tired but good.

Please let me explain…

It’s been 28 days since I last wrote. 28 days that I wasn’t prepared for. 28 days is a long time so I have a lot to say with a lot of pictures so here goes.

We celebrated the “last” day of my original treatment which was 5 weeks of chemo/radiation – I even made a cute little video. At first I didn’t want to make a video or celebrate it because I knew that I had “more” treatment scheduled and it didn’t feel like I was “done” anything as I knew that I had to go into the hospital for internal radiation, however, after talking to a lot of people including my medical team they encouraged me that this was an important step in treatment and it was something to be proud of. So we celebrated. We even went to the top of the CN Tower for a celebratory dinner at 360 and it was amazing – we didn’t even get an extra course. I’m always complaining when we go out for dinner as the chef always sends “an extra course for Victor Barry” or so it always seems so I wanted to go somewhere we could be “like the rest, invisible” and so we did, or we tried. I felt like a tourist and it was exactly what I needed.

I was told that the brachytherapy would be difficult but that they would manage the pain control and to bring movies that I might be bored of all the laying flat and waiting around. So I believed them even though I was skeptical – I should trust them, they know the drill – I’m not the first one to go through this and after all, I was in the hospital so what could go wrong.   Well…

I’ve mentioned this before but let me remind you all that I don’t do well on any drugs – I’ve had doctors tell me before I would make a terrible drug addict because I’m so hyper sensitive to everything. What does this mean you wonder? Well… it means that sometimes when your so sick and projectile vomiting across the room like a dragon fire vomiting monster (ps- reminder: while laying perfectly still and flat because I can’t move) due to this “contraption” stuck up in my woo-haa. So there solution was: take her off the pain meds to control the nausea because she can’t move around and have this contraption move or fall out of her woo ha because then we would have to do the surgery again to put it back in.

But… when they take you off the pain meds for an extended time period then nothing controls the pain and you feel like someone is taking a sharp knife to your lady parts and stabbing you for hours on end and even though your crying, screaming for help – nothing or nobody does anything about it because you’re the “rare case” that is soooooo hyper sensitive to everything they give you. You watch a team of nurses and doctors go over your binder and look at the notes and discuss what they should do next. They discuss it right infront of you like your not there and often glance back at you and give long stares like… huh, this is crazy – what should we do with this patient.

Let’s talk about the itching… they left me without pain meds in the first day for 5hrs and coming down off of the drugs (for me the first week was morphine) I could or may have scratched (what I could reach) the first layer of skin off of me because I was so itchy. They had been giving me pain meds every 2hrs and even that was not enough for the pain. You know that saying we always say ‘lightly’ in conversation… “omg… I wanted to die!” Well, I didn’t want to die, at one point I was in so much pain I thought this is what death or torture feels like – what I wanted was to go into a coma for a couple of days and wake up at home in the comfort of my bed with 1000 thread count Egyptian cotton sheets. Clean sheets. I wanted a nice hot bath followed by a clean sheet cozy bed, cozy night time socks and a soft fan for the white noise and sole purpose of comfort. I actually remember begging Victor to tell them to knock me out for the time so that I wouldn’t feel the pain or remember feeling this way.

Do you get why I haven’t wrote for 28 days?

I wanted to be honest but really felt like I had to get back to the other side in order to say hello honestly again.

Let’s re-visit my treatment plan for those who are just catching up and can’t be fucked to read back on the blog. Don’t worry – I get it… I’m a ‘coles note’ kinda girl myself. Then we can go back to how the in-hospital treatment stories.

So…

• Diagnosed with Stage 2B Cervical Cancer in July
• Recommended Treatment Plan – Chemoradiation 5chemo & 25 external radiation (For chemoradiation, you have external radiotherapy as normal (Monday-Friday), but you have chemotherapy at the same time once a week (mine was Wednesdays) throughout your course of radiotherapy
• Started 5 week treatment plan on August 26^th 2015
• Finished 5 week treatment plan September 30^th 2015
• Week 1 of Brachytherapy (internal radiation) in hospital patient (3days) – October 12^th
• VOTED in the hospital – they came to me! Didn’t have to wait in line – thank you Cancer and congrats Justin.
• Week 2 of Brachytherapy (internal radiation) in hospital patient (3days) – October 19^th
• Week 2 of Brachytherapy caught fever of 39.4C on Wednesday afternoon from infection (which they thought was sepsis because I was showing all the signs of it) and stayed until October 24^th PS- didn’t have sepsis… thank god.
• External Radiation Boost – 6 treatments starting Friday, October 23^rd 2015-Friday, October 30^th 2015

Some refreshers of the Radiation Treatment:

Radiotherapy uses high energy waves to treat cancer. You can have radiotherapy for cervical cancer externally or internally. 

External radiotherapy treatment means the beams are directed at your body from a machine that is similar to an X-ray machine. This type of treatment is given in the hospital radiotherapy department. You usually have this once a day from Monday to Friday with a rest over the weekend. External radiotherapy treatment for early cervical cancer usually lasts for 5 weeks.

Internal radiotherapy means a radioactive source is put into your vagina and up into the womb. This stays in for either hours or days (in my case it was 2days) to give an extra boost of treatment to the cancer itself and the area close by. Sometimes doctors use radiotherapy after surgery to boost the Internal Radiation.

So back to the stories. They ended up getting my drugs and nausea under control and even though I was in a lot of pain the nausea was better and I got to go home late Wednesday night with the help of my older brother Chris wheeling me out of there and Victors PIZAPIE get-a-way car. We had convinced the nurses I was well enough to leave, when really I should have stayed the night. I was exhausted on Thursday but feeling over all really good considering what my body had been through. I wasn’t really looking forward to going back to the following week but I was hopeful that they wouldn’t make the same mistake twice.

Going back to the hospital on the following Monday was daunting, but again I had really convinced myself that they would know better this time how my body reacted and would have a plan for me. The week before Victor’s sister Jenn had flown in from Vancouver to watch the girls at the house and this week we had taken them to Cindy & Kyle’s so that they could hang out there while we were in the hospital. So grateful for friends and family during this time – can’t express enough of the kindness and love going around.

Coles notes… it was better this round. Not 100% better – but better. However, I warned every nurse, doctor, porter… everyone of the “rarity” patient I was. I’m sure they thought I was nuts. I begged for new drugs and Victor was my biggest cheer leader trying to make sure that I wasn’t in the pain I was the week before. I made sure to bring my own little fox bag full of drugs as backup… just incase I needed to double up on anything. PS- that’s not recommended but I wasn’t taking any chances. I got my same private room again – they even said that to me. “Hi Nikki – you have your same room, you know where to go!” Which at first was comforting… then I hated it. “My room?!” Why would anyone want a room on the 17^th floor of Princess Margaret Hospital. Brutal. But… whatever – let’s do this. So, they changed up my pain meds – gave me a heavier pain med that doesn’t cause as many reactions and put me in la, la land. Hello?!! Where was this last week? I was in the land of rainbows and unicorns and it was a completely different experience. I was flying through treatment and looking forward to going home. Well, that was until I spiked a fever of 39.4C on Wednesday afternoon. I was dazed and confused, literally. I was so sick, vomiting and completely not myself and the doctors were concerned and I wasn’t going anywhere. The next Thursday I slept most of the day – the special team of Infectious Control Doctors came to visit me, I had moved from Grey’s Anatomy to an episode of House and I was so high on drugs I probably thought I was actually on a tv set. I had a fever they couldn’t control and I had low blood pressure with a high heart rate. What’s the concern. Sepsis. What’s Sepsis? Nothing good. If you google it says… Sepsis is a potentially life-threatening complication of an infection. Awseome. Thing is, I didn’t even realize that this was the concern until the day before I left – I was so out of it. Truly not myself. I mean shit… I was in for internal radiation Cancer treatment… now I’m one of the “rare” cases again that might have a life-threatening complication from an infection. Seriously. Come on people.

So… off I moved into another room as I was staying a while. Roommates. Let’s talk about roommates. Or… let’s not. Ugh. Well, I hadn’t really thought that I would be staying longer than my 2-3days and I really hadn’t thought or prepared myself for a cancer roommate – nevermind a little old lady that had cancer and diabetes with open blister wounds. Open blister wounds. Yup. May I remind you how super sensitive my sense of smell is right now? Well, that mixed with open human blister wounds is… a lot. You all might want to puke in your mouth right now, difference is I did. Lovely old lady but… wtf. Get me out of here.

So, I thought maybe I would be going home the next day but Doctors told me on Friday afternoon they would be keeping me for the weekend and they didn’t want to take any chances. I cried. I was sad. Devasted even. I hadn’t seen the girls since Monday morning and I felt better… I didn’t want to stay – I didn’t feel sick and I didn’t feel like I belonged. I’m not really a “mom” that longs for her girls, however, I do get to spend a lot of time with them – I’m lucky that way. But I found myself exaggerating to the medical team… “Please… I’m a new mom and I haven’t seen my babies since Monday!!!” People seem to have more compassion for a new mom – I felt horrible for stretching the truth but I just wanted out. I felt like I was stuck in a crazy person hospital and I was the only sane one there – but judging on me reading back over my blog and how I was behaving I probably looked and was acting like a crazy person. I strolled around the hallways pacing with what little energy I had with my IV and highly potent antibiotics (because, after all they did think I had a possible life threatening infection) trying to “show” them how strong and how normal I felt. The smells were so bad in my room I couldn’t use the washroom, I actually got up with my IV and went down to the public washrooms. True story. So when I found out I had to stay I couldn’t handle it all – it was all too much to bare and I balled my eyes out and in that moment I wanted to tear the IV out of my arm and “break free” and never turn back.  And yes… the song “I want to break free” by Queen came to mind and yes… I started singing it. Loudly. It seemed appropriate at the time. I was definitely having withdrawals from the extreme amount of pain medications and I was crazy moody – not to mention the hot flashes and moodiness from the menopause symptoms. Not pretty. I felt and thought I was loosing my mind – I was desperate to be anywhere else and I hadn’t felt this way through any of my treatment yet. It was the first time ever that I was like… Fuck this… I am not interested in having cancer and being an in-patient.

Insert screaming crying rage filled lady in middle of ugly cancer hospital here.

Insert most patient husband beside crazy lady here.

Pause. Sigh.

Insert someone saying: I ka-rum-ba.

Pause. Sigh.

Insert: “I want to break free” song by Queen again. Repeat.

Insert: “Calm Your Mind, Warm Your Heart” mantra x100 then repeat. Thank you Catherine Phillips

So… I stayed and Victor requested that I move rooms and after a long chat among head nurses they moved me and my new roommate Rose was lovely. It was Friday night and the Blue Jays were playing so that was a fun thing so Vic and I set up shop in the lounge with the Blue Jays Game – life was good. I had taken my deep breathes followed by my Adivan the nurse had suggested I take (again… probably cause I was acting like a crazy cancer patient lady) and life was manageable again. Then… Heather Holmes surprised us with a visit and we watched the Blue Jays game together. Sigh… things were ok. There were amazing sounds of Blue Jays excitement of fans and sports commentary then… to our surprise down the hallway the reality of our surroundings came back to life where the sweet screams of death from Mrs. Campbell room escalated. When Heather asked me what all the noise was I replied softly and quickly with my eyes stuck on the ballgame… “That’s Mrs. Campbell dying.” Heather’s response was, “dude – wtf, are you serious?!” I didn’t answer – I didn’t have to. I remained staring at the TV screen. The day before she had been screaming all day for the “Lord to take her & Momma loves you!”. It was sad, but a huge part of me was relieved for her that she wouldn’t be in pain anymore. And so we and the others in the lounge went back to the Blue Jays game while the screaming of death and sounds of tears went on for 45mins, friends and family begged for the doctor to save her and please don’t take her from us. Someone uncomfortably asked if they should shut the door to the lounge and I asked for them not too. Strangely the vote was to keep the door open. The lounge was a mix of patients and family sitting around watching the Blue Jays game, it seemed like the most normal thing to do given the circumstances. I sparked up and said… “I’d rather hear them and know what’s going on then to hear muffled screams and not know.” Most everyone agreed. It continued for a while and then they had to have security intervene to have her body removed. I asked for double my dose of sleeping pills that night and the nurse didn’t hesitate. In the morning I found myself back up, curious to walk past her room to see if what had happened was a dream or if was indeed a reality. I think I would have felt better had the room been completely turned over and ready for a new patient but it wasn’t. Her name “Mrs. Campbell” was still on the outside of the door and her room was untidy with old food containers most of them coffee cups left over from what I assume to be her family & friends. There was also a lounge chair that you don’t see in the other rooms and I assumed that was because her “someone” was sleeping beside her everyday knowing that it may be the last. It was heartbreaking. She was gone. I’ve been documenting this entire experience and I’ve taken photos of almost everything, most of them I would like to share including the one where I have puke selfie. No joke, it’s actually pretty funny. I had my phone with my and as the cleaner mopped the floor of the empty Mrs. Campbells room I wanted to snap a pic of the sheer reality of what was happening but I couldn’t bring myself to do it. I even did a second lap around because I was angry that I didn’t take the pic, but when I returned to the room after my lap – the “pic was gone”. The room was more clean, and the documentation would have been not the same. You get it. It’s strange that I felt this way but it’s my process I suppose. I hadn’t really thought much about the fact that I was staying on a floor that had dying cancer patients. Mrs. Campbell was in a “private room” much like the one I was staying in and in that moment I was so grateful for my roommate – no one wants a private room in a Cancer Hospital.

So… that’s where I’ve been. No where you would want to be and I wasn’t sure that you would want to know, but now you do.

28 days.

28 days I wasn’t prepared for.

4 extra days of in-patient hospital care that I was really, really, unprepared for.

Lots of stories and met lots of cancer ‘friends’ if you could call it that. But that’s another post.

Want to hear the good news? I know you do. So… the good news is – the tumour that was 3cm is now almost gone and in many small pieces and although they don’t know if there are still live cancer cells they say it’s amazing progress. The lymph nodes after my internal radiation have finally responded and have started to shrink which is a great start and Doctors say that the treatment will continue to work for the next 6months. I had 6 radiation treatment boosts and I’m overall I am feeling good. Tired. Super super fatigued. My immune system is low and my hemoglobin numbers are at a low 94 and I started in the 130s, nothing to be super concerned about they just recommend that I rest up during the next couple of months.

So, what now? Well.. I have an entire journal of things to still talk to you about when I am feeling better and it’s the waiting game now. We wait 6months before they do new scans to see if treatment was successful. Someone asked me today if I stopped my blog and my answer was absolutely not but that the last 28days has been difficult for me. Reminds me of the movie 28 days. I kinda feel like I’ve been at a camp reflecting and taking my time to come back to human life. I never thought I would say that if you would have asked me back in July. Honestly. Nothing prepared me for this last month, emotionally and physically so you’ll have to excuse me for my absence but I’ve been trying to find my mojo again.

I had coffee for the first time yesterday. I feel like that’s a good sign of me feeling better as I haven’t had one since the middle of august. I also drove the car the other day – something else I haven’t done since August. I made a conscience decision to not drive a vehicle during treatment as I sometimes have weird reactions to drugs and I was on a lot of them and the fatigue/zombie like symptoms at times was unrecognizable to me. Something probably similar to sleep deprived moms, and considering I’m a new mom as well I just thought it was a bad combo.

Wanna hear the funny part? My last day of my treatment was Friday, October 30^th and I walked home from the hospital. I was by myself, Vic was at an event and I was feeling good so I wanted to go by myself and it was a beautiful day out. On my way home from treatment I had to pick up a package and on my way out of the post office I left my ID behind. I came out of the Post Office close to College and Spadina and there was no traffic so I ran across the street. This is something I don’t like to do. I was trained from a young age from my mother and father to always cross the street in safe zone, cross walk or street lights – always be careful look both ways. Shit – look all ways my dad would say as “the city is dangerous” with crazy mother fucking drivers. Well, I ran across the empty road and then I heard the voice of this screaming China man from the Post Office.

Reminder: I’m super sensitive to anyone screaming right now.

“Miss.. Miss – you left your ID!” At the top of his lungs… screaming loud.

And there it was… my funny but not so funny moment where I almost get run over by a car on my last day of my cancer treatment.

I turned around quickly and continued walking, I might have even skipped or ran – I was happy. Not exactly sure but I do know that I was not paying attention to anything other than the screaming voice at me and then I heard the horn, followed by a loud shrieking noise from the car brakes. I could have reached out and touched the car. In my defense the car came from no where and he was driving fast… like really fast!

It was strangely the closest I’d ever been to my own death and I found irony in that moment. I laughed so hard I peeded my pants. Literally. And then I smiled the entire way home, thankful to be alive, thankful to not have to replace my drivers license because we all know what a pain in the ass that is to get replaced and also reminding myself to not be SO stupid and to start wearing a thicker panty liner in the future.

🙂 Love, Nikki

Private Patient Room – Week 1.  Ms. Mckean

Room with a view.

Visitor Lounge. Let go Blue Jays – back to back screenings!

Private Patient Room – Week 2.  “Mrs”. Mckean