Category: Personal

Stability ain’t what its cracked up to be!

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This is my favorite time of year. I don’t know what it is about the weeks leading up to the holidays, but I just love them. My heart is warmed by twinkling lights adorning all the neighborhood houses and people seem just a little bit more cheerful. Just the other day it snowed, not just a dusting either, a real good snow. It was magnificent. Looking out our windows Sunday night and seeing a fluffy white blanket covering everything made me giddy. Everything seemed magical and pristine.

Winter Wonderland
Guess we have to shovel out the car
Perfect Finn Prints
Doorway to Narnia
Most wonderful time of the year

That day I spent the day in my jammies watching movies with the pups and a good cup of tea, it was heaven! A stark contrast to the hustle and bustle of the week before. It was a scan/check-in week preceded by a very long scare & scan day the previous Friday. Needless to say I had an x-ray, two chest CTs (one abdominal and pelvic), an MRI, an ECG an ECHO as well as blood work (thank you port) all in the span of 5 days and my body was feeling a little worse for wear. Thankfully, the scare turned out to be a chest infection and nothing more. Amidst all that my scans still say stable.

img_4782
Blargh!!

I am learning to live with stable, even though I don’t like it, even though I’d feel so much more secure if I was NED. NED allowed me imagine no cancer in my body, whether it was true or not, I don’t know. Its hard and sometimes torturous knowing that inside you there is a ticking time bomb or in my case many little time bombs just waiting to grow and spread (and kill you). The uncertainty makes it easy to go down the rabbit hole so much so that the thoughts permeate into everything, even my seasonal happiness.

While trimming the tree, I caught myself thinking… Wow! This is our first Christmas in this house, how truly amazing. I wonder if it will be my last? I wonder how many more Christmases I’ll get? I wonder if Patrick will decorate like this after I’m gone?

You see how easy it can be to get sucked in.

I don’t know if it is because I live my life in three week increments or six week milestones, but looking at a full year is truly daunting and scary. I felt the same way planning my wedding. It felt like a mixture of joy and sheer terror! Life can change so quickly. I have seen it happen too many times.

And then I remember to breathe.

Despite all these crazy emotions and being sick (my lungs sound like bagpipes warming up), my soul is happy. I find myself sitting on my couch sometimes, and I look around, and I am awed and I am grateful for all the blessings I have in my life. My husband, my family, my friends, my dogs, my home, and my health. My life is so rich! That is what I need to hold on to. That is the light that guides me out of the rabbit hole.

 

AM

 

The New Face of Lung Cancer

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Receiving a cancer diagnosis is devastating and life altering, but as a young adult with lung cancer the challenge was even more daunting. Like most people I was oblivious that I could get lung cancer, after all as a young woman I thought I was more likely to get breast cancer because I had breasts. I never fathomed that because I had lungs I could get lung cancer2013-08-14-20-48-46. I know differently now.

Even after beating the odds of living 5 years beyond diagnosis, the first question I’m asked when people find out I am living with lung cancer is “did you smoke?” The idea that smoking causes lung cancer is so entrenched in our psyche that most people have no idea that up to 60%1 of lung cancer patients have either never smoked a day in their lives, or quit decades prior to their diagnosis resulting in an unfair stigma being placed on patients and their families.* The notion that someone deserves their disease is a ridiculous concept to me, but a 2010 national poll showed more than one in five Canadians said they feel less sympathy for people with lung cancer than those with other cancers because of its link to smoking2.

I started down this road in 2009 when a small bump on my collarbone sent me to my doctor. Despite being unconcerned he sent me for an x-ray. That simple action would lead to the cascade of tests that would ultimately lead to the diagnosis of locally advanced adenocarcinoma of the lung. I am lucky! Things could have gone differently, I could have been inoperable, I could have been sent home, I could have been ignored, I have many friends who were, they didn’t get diagnosed until they were very sick, and sometimes even too late.

Once I peiced the tatters of my life back together, recurrence hit. I was devastated once again. My worst fears had come to pass. Beating Lung Cancer once was hard, I knew beating it twice would be damn near impossible, after all, at 17%, the five-year survival rate for lung cancer remains one of the lowest of all the major cancers3.

Finding out that I was a mutant was a relief…I know what you are thinking?? What! I’m sure most people would opt for a super power, but knowing I had an ALK-EML4 fusion meant I had options, so for me it was just as good. Prior to this revelation, I had few to no options left as a 32 year old stage 4 recurrent lung cancer patient. I was literally waiting to get sick so I could get treated and hope it wasn’t too late knowing full well I’d likely become one of the 85% of lung cancer patients. Dead.

I found information about a targeted therapy in clinical trial in a blog, much like this one. At the time I didn’t know anything about trials, targeted therapies, or driver mutations but I immediately jumped on this and looked for any way I could get in to the trial. Luckily there was a trial close to my home. In Sept. 2011 I was admitted and randomized to the drug group and began taking an ALK inhibitor. From that time until July of this year I had been NED (No Evidence of Disease, the best letters of the alphabet) and being unrmarkable was fantastic, but things change. I have always known that change would come, cancer is cunning and insidious.

Fear not dear reader, I am in a new trial for a third generarion targeted therapy. Targeted therapies mean I can live a fairly normal life. I don’t have to worry about neutropenia and infection, or other damaging side effects. I am able to live and travel. I am able to advocate and volunteer. I am able to plan a wedding, buy a house and plan on a long life ahead. It isn’t a cure, I will likely never be cured, but I gladly put my faith in research, after all it has given me five years and counting.

What’s disturbing is that every year, 26,100 Canadians will be diagnosed with lung cancer, 20,800 of those diagnosed will die4. It takes the lives of more Canadians than breast (5,000 lives), prostate (4,000 lives) and colorectal cancers (9,300 lives) combined5. Yet it is one of the most underfunded.

It is exciting times in lung cancer research and diagnosis. Less invasive procedures, genetic testing, screening procedures, and many new targeted therapies are being developed and improved upon and patients are benefitting in so many ways. From prolonged life and higher quality of life to the freedom of taking their treatment at home and living life unremarkable or not to the fullest. You may think, great! They don’t need funding or support, but in actuality, the disease receives only 7 per cent of cancer-specific government research funding and less than one per cent of private cancer donations6. I can only imagine what they could do with 3%.

Living with a chronic disease, isn’t about how many days we have to live, it’s the ability to live life in the days we have. When it is my time to leave this earth, I will do so having no regrets. I will know that I did not let my diagnosis define me but allowed me to be the person I was meant to be.

AM

*Current smokers had smoked 100 or more cigarettes and currently smoked. Current non-daily smokers were current smokers who smoked only on some days. Former smokers had smoked 100 or more cigarettes and no longer smoked at all7.

  1. Lung Cancer Canada, Lung Cancer Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
  2. Ipsos MORI, Perceptions of Lung Cancer in Canada, An Ipsos MORI report for the Global Lung Cancer Coalition, April 2010. Accessed at: http://www.lungcancercanada.ca/ resources/site1/general/PDF/CanadaReport.pdf
  3. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 64
  4. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  5. Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
  6. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
  7. Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.

 

 

 

Its #LCAM

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Please excuse the late post! I was truly hoping to have this post up earlier, much earlier infact, but today was one of those crazy days where life goes topsy turvy. Now before I get to that, I wanted to share a few Halloween pictures since this was our first in our new home. After prepaing for a barrage of kiddos, we ended up only getting about 20, so leftovers abound as evidenced by some of the pictures.

These aren’t the droids you are looking for.
Lacey’s costume wearing lasted long enough for pictures.
Barkners in crime…complete with phtttt tongues.
Lacey’s guilty derp face

Okay now back to the crazy day! It was November 1st yesterday marking the beginning of Lung Cancer Awareness Month. Usually I am busy attending or participating in Lung Cancer Canada’s press conference where they present our Faces of Lung Cancer Report that details the current status of lung cancer in Canada, however this year it was held in our Nation’s Capitol, Ottawa. I made the choice to stay home in Toronto as I had a project of my own that I wanted to launch. Since I hadn’t gotten a good sleep the night before (hello 7am sleepy time) I was just getting up, when I got a call to see if I was available to do an interview. Of course I said yes! Anything to help raise awareness!!

So up I got and scrambled to get my self and the house ready incase they came here. Needless to say, I just had enough time to shower and meet with the interviewer. The topic of the interview was the rising incedence of lung cancer in women and lung cancer as a women’s health issue. Now far be it from me to tell the media that they missed the ball on that one (It was one of the main topics of the first Faces of Lung Cancer Report), but I answered as best as I could. It went well and I went home and set the PVR. Here is the link. If I had a wee bit more time, I know I could have avoided all the ums and ahs.

When all was said and done, I got to work on my #LCAM project. Some may or may not have noticed a new menu button on my home page, but one has been added and it links to my new storefront (Hope Happens). If you click it, you will find handmade jewelry made by yours truly. It is symbolic of the hope I have for myself and for others who have been diagnosed. All the jewelry features pearls as pearl is the colour for lung cancer. It is my hope that I can raise $21,000 by next year at this time for the almost 21000 Canadians who will die from this disease in 2016. So please take a look and help me to support research and programs for patients and their families.

AM

 

 

 

 

 

 

 

 

 

 

Scanxiety and my irrational mind

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I sit here on this gloomy day waiting for all my appointments to be over. I have been here since 8 am, it’s now quarter to 5 and I’m still here. It has been an unsatisfactory day. I was hoping for the results of my last CT, I’m here to do an MRI, the anticipation is killing me. Outwardly I am calm, cool, and collected, but I’m good at hiding my anxiety. Ask anyone close to me and they will tell you they had no idea I was worried, but I have been hoping for an NED for a while now. I’m still waiting and I’m worried.

I thought I’d be a super responder like I had been on Crizotinib. I was NED within 6 weeks, until I progressed almost 5 years later. The bar was set impossibly high. I’m on cycle 6 of Lorlatinib and I’m impatiently waiting for what may never come. Don’t get me wrong, I am responding, things are shrinking. I am happy about that, where my disappointment lays is in the fact that things are still present or at least they have been.

I got used to clean scans and the complacency they brought. I got lulled into a false sense of security. I took comfort in being unremarkable. I can tell you I am no longer complacent or secure. I am in fact very very insecure. 

I need to say I don’t do well with uncertainty. I am a confessed Type-A so me and uncertainty don’t like to dance, and lately we’ve been dancing far too often and uncertainty has been stepping on my feet. 

In my rational mind I tell myself, “Self things are going very well, they are moving in the right direction, be happy. Remember, you can’t control anything except the way you react. Be happy.” My rational mind is wise, my problem is my irrational mind is what’s been talking to me lately and that conversation doesn’t go as well!

My irrational mind is full of fear and brings me to all sorts of dark and worrying places. Places I don’t want to think about when I’m dealing with the unknown. It reminds me of the first time I felt this way, way back in 2011 when I wasn’t sure my cancer had come back. I had to know. Knowing meant I could gear myself up for a fight, or to deal with sadness/anger/relief, but not knowing. Not knowing was torture! 

Back then I was terrified that I would have a recurrence. It was the worst possible thing that could happen, or so I thought. Then it happened. I realized it wasn’t the end of the world. It changed things, a lot of things, but my world didn’t end. Actually it allowed me to realize and accept that my life would always be different. That was a good thing. Now I feel different. The stakes are higher. I’m not affraid of recurrence, recurrence is my reality, what I’m affraid of is running out of options and running out of time. NED means so much more now that it isn’t just me. 

NED means I get to garden in the spring. It means I get to keep coming home to two ecstatic dogs and a loving husband. NED mean I can keep advocating. It means I can appreciate growing older, my gray hairs and wrinkles. NED means I get exponentially more moments of small joys. That’s all I want. Until then, I will be a bundle of nerves. I will have an ache in my stomach and knots in my back. I will feel the elephant on my chest. I will try to breathe, I will try to remain calm, but until I read NED on my reports, nothing will quell my anxiety.

AM

Time flies…when you can’t remember

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On October 13th, CBC Aired an interview Peter Mansbridge did with Gord Downie, I watched with anticipation, curious to see what he had to say after The Hip’s national broadcast on Aug 20th. I hoped it would reveal that he was in some miracle treatment, that things were going well and that he was the Gord we saw on stage. He was in some respects, he discribed with great passion his legacy project: The Chanie Wenjack Fund and his upcoming new album Secret Path, both fulfilling a promise he made to our First People’s. It is his hope that this Fund will help support reconciliation between Canada’s Indigenous and non-Indigenous peoples.

What was heart breaking was his admission that his memory, once great and vast has diminished. He had to write words on his hands to remind himself of things. For his epic perfomance that our nation watched, he needed 6 prompters to help him remember the word to the songs. Songs he once wrote.

http://www.cbc.ca/news/thenational/gord-downie-exclusive-interview-1.3804422

I know how it feels to forget. I do it too.

Since starting Lorlatinib, I have seen a sharp decline in my day to day memory. Despite what my cognitive tests show or test for. I have experienced Brain fog before, but never like this. It was like someone had hijacked my brain. I felt like I was losing my mind.

In the beginning I just didn’t know what to do. I couldn’t remember if I had fed the dogs, or where I left my shopping cart, whether I had spoken to someone or not, or what I was saying in conversation. It was traumatizing!

My solution was to just write it all down. So I literally had lists, lists everywhere. I have adapted over the last few months and am coping better. Now I’m using what Pintrest calls a Bullit Journal. I love it. Its like an agenda where you can journal if you want, but most entries are very succinct like a list. So now I can keep all my appointments, chores and important things to do straight, no excuses, no forgetting!

I still won’t be able to tell you what I did yesterday or last week, unless I look, but looking made me realise that I was busy in the last little while and although I feel like my days all meld into one, I’ve done a lot and time really has flown by.

AM

The Kids
My Oasis
Fam-Jam
Wedding in Ottawa
Fam-Jam #2
Port re-insert
My husband gives me butterflies
Pizza dinners
Lazy summer days
Dig-dog days of summer
Dog days of summer
Making friends
They can be so sweet
Grape bounty
I left for one minute…
Home made Grape Jam
Roasted peppers
Fall is coming
Gardinera
My canning obsession…more on this later
Borat decided he would be my dinner date.

 

These are my Scars

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I was born naked 
Perfect skin
Ten fingers ten toes
One mouth one nose
To breathe life into my lungs
I cry out

I grow 
I learn
I stumble 
I earn
I fall
I stand tall

Then you came
Death and destruction 
Fear and shame
Monster of many names
I cry out

Needles needles needles
Poison 
Cut open
Born naked 
Imperfect
I cry out 

Your footsteps follow
Darkness and doubt
Sadness and anger
Fear of your shadow upon me

I crawl 
I grope 
I struggle 
I fall 
I cry out
I stand tall

Born naked
These are my scars
I wear them proudly
I stand tall
I cry out

Happy National Poetry Day

AM

Dollars and Sense

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I have a confession to make.

I am an emotional spender. I spend when I’m happy, I spend when I’m sad, I spend when I’m angry, and I spend when I just can’t deal with my shit.

I have never been good at staying within a budget, let alone making one, but it is no excuse not to learn. Money has always been my Achilles heal I’ve just kept it hidden. When I was working, living paycheck to paycheck was my MO, and I could afford to do it, I didn’t want to, but it always seemed to work out that way. Once I got sick and took a hit to my finances, I spent a little less because I had other expenses like meds and gas to pay, but there way always plenty to use for my own mischief, enough to save for a car, enough to travel, enough to invest a little. It is different now.screen-shot-2016-09-21-at-9-19-38-pm

Now it isn’t just me. I am part of a team, an us. For a while, I forgot that and went back to old bad habits. I was selfish and even though I thought I was doing good for us, I was really fulfilling my wants, not our needs. As a single, I could spend my way into “happy” oblivion and not have anyone to answer to but myself, now I am part of an us and irresponsible spending can leave us homeless.

Now I or rather we own a house. A big honkin’ pile of debt, screen-shot-2016-09-21-at-9-32-29-pmsomething I was unfamiliar with, or at least up until now able to earn my way out of. It wouldn’t be such an issue if I could just go back to work, but as you know from previous posts its not that simple.

It is expensive this thing we call living, so if regular folks are having problems with managing money and debt, you can imagine what its like for someone who is chronically ill, disabled, or has cancer. I always thought it was just me, that I couldn’t live with in my means, but apparently many are in the same boat. According to The Canadian Payroll Association 48% of Canadians are living paycheck to paycheck, by choice or not1.
So with my confession comes a plan, a plan to get my shit together and learn to be financially responsible and debt free.screen-shot-2016-09-21-at-9-15-35-pm

Step 1: Come clean – Very hard and embarrassing to do, but it is a necessity. Your partner needs to know what the money situation is. You are a team after all and honesty and open communication is key to a healthy happy relationship. If you’re a single then ask for help from someone you trust.

Step 2: Stop spending and figure out what’s going on! – For me it tends to be crushing life events like death, cancer, or my death and cancer that spur on a spree. What ever the reason behind the spending figure it out and deal with it.

Step 3: Keep track of spending – Save all bills or write all spending down. I mean it! Every single cent! You need to know where and how you are spending your money.

Step 4: Budget – Now take all that juicy information from step 3 and look at spending patterns. Make a list expenses. Determine what is a necessity or a want. Now calculate your income or any money coming to you. Take that amount and allocate it to your expenses first. Then take what’s left over and allocate a portion of that to your wants. The rest goes in the bank. I know not so easy. But we can do it!

Step 5: Follow the budget – Here is the really hard part, actually sticking to it, because there’s always something that comes up. A birthday or a party, or Uncle Bob is in the hospital, but that is life, something is always going to come up. If we do this right, it won’t matter what it is, we will be able to everything we want and more. Its this first bit, where we will learn to exercise restraint and maybe say no or come up with cost free ways to celebrate, or even cut costs in areas of our lives. I can tell you that my consumption of cheese has drastically reduced as has my shopping, only necessities!

Step 6 Review and revise – As time goes on and habits change or as savings increase and debt decreases, revision will be necessary. After all, these things aren’t written in stone!

screen-shot-2016-09-21-at-9-38-46-pmListen, I’m no professional and this is my two very flawed cents, so anything I say here is not and I repeat not advice from a professional. This is my way of learning and holding myself accountable. For those who want to join in this exercise, I will post what I’m doing and the tools I’m using to get through this process. Otherwise, please seek the help of professionals.

Until next time

AM

Reference: www.payroll.ca/cpadocs/2016/National_FINAL_EN.pdf

Time…

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Here I lay in the wee hours of the morning of the first day of school. Like many, I couldn’t sleep, my mind whirring away.

I should be getting up and ready for my first day of a fresh teaching year like many of my friends today.

I should be preparing myself to welcome familiar little faces full of excitement, anticipation and first day jitters. Little people ready to regale me and their classmates of their summer adventures, ready to jump into new adventures.

I should be, but I’m not.

I’ll be home for my 6th year on leave.

I miss teaching.

I have thought of returning, torn myself in two trying to make a decision one way or the other, but the decision has already been made for me really. My treatment has decided, or rather how my body reacts to it decides.

In previous years, I was so plagued by fatigue that I thought I could never make it through the day, let alone attempt any kind of job, let alone teach, so I stayed home.

Now I’m bursting with energy, I hardly know what to do with myself! My limiting factor is the edema in my hands and legs that impede me from being as spry as I was, so chasing a class of 6 year olds might be a bit tricky. My cognition isn’t so hot right now either, I’m so forgetful it drives me crazy. So returning to school is not in the cards, now or in the future.

Those are the trade offs for time.

Time. What do I do with the time?

Nothing is dead down here just a little tired

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Last night I watched one of my favorite bands retire. It was quite an event. The Canadian Broadcasting Corporation cut their coverage of the Olympics to show the concert held in Kingston Ontario. I’d say that’s a pretty big deal! Tonight we Canadians collectively came together in our Cities, Towns, and homes to watch one last show, to sing, to dance, to cry and to mourn.

When I first learned Gord Downie of The Tragically Hip was diagnosed with a terminal glioblastoma I was heart broken. I knew what was ahead for him, his family and his friends. I knew the long days at the hospital, I knew the poking and prodding, and I knew the anguish of the words terminal cancer, because I too have been there. Ironically at the very same hospital.

Seven years ago, I sat in the same chemo ward to receive my treatment, and I listened to Gord and The Hip to get me through the long days spent hooked up to an IV. I let their words and sounds wash over me and transport me to another place. To small town Ontario or a coudoroy road in central Canada, I let Gord tell me stories. I wonder, does someone do that for Gord?

I had been a fan long before The Hip got me through cancer. I loved them because they made me feel incredibly Canadian and proud to be so. I have even been fortunate to see them live. So I was crestfallen when tickets to their final shows had sold out in minutes. The truth is, I don’t think I would have lasted through a two-hour show, so my couch is the ideal place to say goodbye. I’m not very good at crying in public.

It is truly remarkable that the band are touring. It was a sight to see Gord perform a 3 hr. concert when some days I can’t even walk down the stairs. Mind you I have been doing this dance for 7 years and my feet are tired. Although more subdued than I have seen before, he was pretty on point, I don’ t know how he is doing it! I don’t know how he is holding it together. But then it happened, the scream. The scream we heard across the country, the scream every cancer patient has had, the scream where all the emotion just pours out of us.

Most of us scream in private, he did it publically very, very publically and it was beautiful and heartbreaking. I felt it through the TV and I cried. This primal expression of sheer emotion pierced my heart and I remembered that I was dying too. I have been dying for a very long time thanks to breakthroughs in research in the area of lung cancer. Those breakthroughs can’t happen without money, sadly lung cancer funding is sorely lacking, so is funding for brain cancers.

Through his diagnosis and this tour, Gord has become a one-man awareness machine and is raising a boatload of money for brain cancer research. His death will likely save many lives through the funds raised. Most individuals would focus on themselves in situations like this, I did, and many I know did. You can’t help it. Gord Downie didn’t. He did the exact opposite. He created a fund, wrote and recorded an album, and then toured across Canada to say goodbye to fans in what is the most epic living wake possible, culminating in tonight’s show.

I want to go out like him, with skill and determination and grace too.

 

 

 

 

Why do I feel so bad for feeling bad?!

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I hate to admit it and usually I wouldn’t and don’t, but here it is. I am struggling!

At least I feel like I am. Normally I would keep all this to myself and just bury it and I really don’t have a good reason for sharing my funk, but for some reason I feel compelled to do so. Even as I type, I hesitate. I fear that those that read this may think I am being negative or that something is wrong.

I don’t have a good answer to why I’m in a funk, but I am. Despite my husband desperately trying to pull me up, despite having a great weekend in Ottawa, despite getting good results back from my first CT. The drugs work, my tumors are shrinking and I’m still feeling down.

Maybe its because my edema is bad and I can’t seem to get it under control. Maybe its because my joints ache and I can barely get down the stairs. Maybe its because I’ve been cooped up all summer thanks to the hella hot and humid days. Maybe it because we are house rich and cash poor and I really want a vacation. I really don’ t know.

Those reasons just don’t seem like good enough reasons to be mopey though, not when you know people who are living their end days, not when you know children who won’t have mother’s, not when you know people who don’t have any options left. My crap is trivial.

I don’t know why being down or negative is such a bad thing, but I do know that when I feel that way, I feel guilty. Even my last piece for CKN bordered on the negative. I was hesitant about writing that too. But why? Why can’t a girl wallow?

I’m not advocating giving my mood a postal code or anything, but why can’t I just be mopey and pissed off for a little while, no questions asked, no concerned looks, no judgment (especially self judgment). Why do I feel bad for feeling bad?!