How to Love Your Body…When its Trying to Kill You?!

To say I have issues with my body is an understatement. It did, after all, try to kill me. Three times now, and possibly again in the near future.

So how does one come to terms with their body after something like cancer?

Work in progress comes to mind.

screen-shot-2017-01-30-at-9-54-55-pmOnce upon a time, I took my body for granted. It was strong and flexible and I tipped the scales at about 95 lbs. soaking wet. Fast forward a few years and a tussle with lung cancer and my once slim frame is much more Rubenesque.

It has taken a while to realize how ludicrous it is to worry about something so trivial and superficial as putting on a few pounds, especially when I stop and think about what my body has actually been through in the last seven years. I mean, what are a few pounds when your body has been poisoned and radiated to the “nth” degree, not to mention cut open then poisoned some more.

My vain self wishes for my old body back, but my rational self realizes that this is where my body is and needs to be to be healthy and the two factions battle. Most days my rational self wins, but there are days when I go to my closet and nothing fits and I want to pull out my hair!screen-shot-2017-01-30-at-9-52-09-pm

The bigger issue for me is reclaiming my body and getting used to its new limitations. I hate to admit I have limits, but I do. On a good day, I feel like I’m a vibrant young woman, but most days, I feel old. I am constantly tired, my joints are stiff, and my legs and feet are swollen. Despite this, I still try to be as screen-shot-2017-01-30-at-10-03-21-pmnormal as possible. This “normal” is new for me because I once had boundless energy and pushed through fatigue; now its all I can do to get to a couch before I pass out. I have often tried to explain what my fatigue is like, but words fail me. The best way I can describe what is happening is a complete and total shut down that sneaks up on me like a shadow then totally consumes me and I can’t stop it. The problem is even if I sleep, I still wake up exhausted. This makes working and socializing rather challenging.

screen-shot-2017-01-30-at-9-58-27-pmHaving lung cancer really messes up your lung capacity. Even though pulmonary function tests say I am in the normal range, I know I’m not. I can’t run to save my life. Climbing up hills is out of the question, even just a slight incline has me huffing and puffing like the big bad wolf, and stairs, lets not even talk about them.

An added bonus to all this wonderfulness is the edema or swelling, acute neuropathy and arthritis I experience. None of these side effects are predictable or effectively treatable. The neuropathy, which for a long time was a mystery, turns out to be a side effect of the chemo I received. When it happens, it makes anything that touches my skin incredibly painful. Pair that up with the swelling and arthritis and I am one sexy beast.

screen-shot-2017-01-30-at-10-29-28-pmI used to have great legs, now it seems that I have two stumps attached at the hips. I began to notice that my knees and ankles would get stiff, and then I realized that my legs were sometimes swollen, as time went on, they were always swollen to the point that my range of motion became limited. To help this problem I began taking a prescribed diuretic that worked for a while but became less effective as time ticked on. Topping it off was my bone scans revealing what I long suspected, that I have arthritis in most of the joints in my ankles, feet and legs and in my shoulders, hands and wrists.  Hello creaky old lady bones.

You might think that with all these complaints, I am not thankful or grateful for the treatments I have received, but it really is quite the opposite. These obstacles are just speed bumps. I gladly take these inconveniences over being sick or dying any day.

screen-shot-2017-01-30-at-10-36-05-pmSo at the end of January when gyms everywhere are beginning to empty in the annual, New Year’s resolution revolution (Why is it that we are compelled to make resolutions? Does anyone really keep them?) I will be grateful and know that I am good enough.

I am slowly learning not to beat myself up when I get tired, when I can’t do something I used to find easy, or when I’m gasping for air. I’m learning to accept my less lean self and love every inch of it, because it has been though the ringer and remains true. It’s a steep learning curve and there are always setbacks.  So the going is slow, but I will take this body for better or worse and learn to be kind to it.

AMscreen-shot-2017-01-30-at-10-05-27-pm

When life takes you down the rabbit hole…

I’d like to begin by saying WOW and Thank you! I never thought what I wrote would resonate with so many and I want to sincerely thank all of you for all the wonderful comments, encouragement, and for subscribing. I also thought I’d share the results of #BellLetsTalk Day with you.

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You can see here where the funds will be directed.

Besides from being truly humbled by your overwhelming response, it really made me pause and think. There are so many people out there that might be going through a tough or stressful time. I mean life can be really crazy, with or without cancer.

We spend so much of our time rushing around. From our jobs, or school, the grocery store, or carting our kids off here and there that life just becomes so overwhelming and maddening.

Rush…Rush…Rushscreen-shot-2017-01-29-at-5-43-57-am

I promised myself one thing after my first round with cancer, that I would never be complacent in my life again.

For a time, I was hyper aware of all the beauty life had to offer. I know this will sound silly, but it was small miracles like funny cloud patterns or the way my dog would snore, to the way the city was reflected in puddles. I noticed everything. After a while screen-shot-2017-01-29-at-5-47-34-amthough, life began infiltrating these moments and I found myself falling back into old habits. I found myself complaining about the weather (as Canadians will do), feeling my blood boil when I was stuck in traffic, the stars were dimmer, and then I stopped noticing.

I had fallen back into my former life cycle.

Wake up – shower – grab breakfast – grab purse – get in car- eat breakfast – get to work – get a coffee –start the day – work – grab purse – get back in car – drive back home – dinner – marking/planning – pack up for next day – bed. Wash – rinse – repeat.screen-shot-2017-01-29-at-5-52-03-am

Monotony took over and I began living life in autopilot, the thing I swore I wouldn’t do. Maybe before cancer, it was acceptable to just settle in, but not now. I had worked hard to have that life, get that job and build my career. Cancer changed everything. The goals I wanted before, even the ones I had worked so hard for changed, there was no room for being frazzled and stressed, living in a monotonous life.

So upon the recommendation of my psychologist I enrolled in a Mindfulness Based Stress Reduction (MBSR)* course. I was hesitant initially, because really who has time, but I did it. Now you may think MBSR is hokey and all kumbaya, but its one of the only meditation modalities being studied scientifically, and used in hospitals. It was hands down one of the best things I have ever done for myself and my mental health.

screen-shot-2017-01-29-at-5-57-05-amIt isn’t for the feint of heart, because of the time commitment (8 Weeks + home practice), but I swear it is worth it. Each week I would meet with a small group of stressed out over worked harried individuals and we would learn a specific practice or a few. Then we were tasked with homework. Typically it was an exercise in attention, some sort of meditation, and a very short “journal”. Initially it was a challenge fitting it in, but somehow if you are committed, you do find time.

That was 5 years ago. I can tell you that the skills I learned in those 8-weeks saved me a few times. Like the day they told me my cancer had come back, and that there wasn’t much they could do (at that time). I had meditated while waiting for my oncologist, so I was calm and able to be rational and breathe. It allowed me to be clear headed and coherent enough to ask questions, something I likely wouldn’t have been able to do had I been extremely emotional.

As with anything, you need to practice or your skills get rusty. I have to admit that over the years, my practice hasn’t been what it used to be and once again life got in the way (dating, marriage, dogs, house, travel), so last year in September, I took the course again, this time a very willing participant. I will tell you, my mental health has been better since. I won’t lie, I don’t practice everyday (although I should), but I use it when I need it.screen-shot-2017-01-29-at-6-02-08-am

What I was thinking is, there are some online resources that are open-sources, so I thought that if anyone was willing, I would start with this post, and then the next 7 to “lead” a very rudimentary Mindfulness Group, by posting what each weeks lesson is, the practices and leave it up to you to try it out.

There is no right or wrong way, it is about learning to notice, becoming aware, and taking a moment to breathe. If you are game, Week 1 Resources will be posted below.

AM

*In 1979 Jon Kabat-Zinn founded MBSR at the Mindfulness Based Stress Reduction Clinic at the University of Massachusetts and nearly twenty years later the Center for Mindfulness in Medicine. Both these institutions supported the growth and implementation of MBSR into research and hospitals worldwide.

 

Mindfulness is the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally, to things as they are.

– Williams, Teasdale, Segal, and Kabat-Zinn (2007)

 

Week 1 Mindfulness: Awareness & Automatic Pilot

  • When we are on Autopilot, we are more likely to become annoyed or have our “buttons pressed”.
  • Becoming more aware of our thoughts, feelings, and body sensations, we can choose not to go down “the rabbit hole” or mental ruts.
  • The aim of MBSR is to increase awareness so that we have more choices when we respond to situations, rather than react automatically.
  • To achieve this, we practice becoming more aware of where our attention is and deliberately changing the focus over and over.

Activity 1: Raisins

Take a raisin, or any small edible item. On a piece of paper, write down your immediate thoughts about that item. Next, use each sense to examine the item. Eyes, ears, fingers, mouth. Do each for a good minute. Now write down what you notice.

Meditation 1: Body Scan

Begin with a 45-minute body scan (see below). I suggest a quiet place where you can either sit or lay down. Its ok if you fall asleep. I did.

Home Work:

  • Do the body scan 6x for week one
  • Record what you notice each time you do the practice.
  • Choose one routine activity (washing your face, brushing your teeth, lacing your shoe, etc.) and make it deliberate, just like the raisin activity.
  • Eat one meal mindfully (i.e. Like the raisin activity)

Meditations:

www.guilford.com/MBCT_audio (Requires creating a user account)

https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/

Suggestions/Tips:

  • Learning suggestions
  • Dress comfortably in loose-fitting clothing (sweats or yoga-type clothing work well).
  • Use a mat or pad that you can lie on the floor with.
  • If the temperature varies the room you are using you might want to dress in layers.
  • Choose a quiet spot or time when others will not be interrupting.
  • Download meditations to an iPod or other listening device for easy listening.
  • Good Luck

 

Even Warriors Get the Blues #BellLetsTalk

Today is #BellLetsTalk Day, a day where, here in Canada we have a chance to talk openly about mental health. That’s not to say we shouldn’t be talking about it every other day, but on this specific day Bell Canada will donate 5¢ for every mention of (#BellLetsTalk) in social media. So please share this, a text, or a tweet for mental health.screen-shot-2017-01-25-at-3-49-45-am

Even before being diagnosed with cancer, I battled with depression and anxiety. As early as my late teens in high school, when it felt like I had an elephant on my chest, or when my heart would beat so fast it would take my breath away. I didn’t know it back then.

It came around again after a time I had gone through a number of changes and losses (the diagnosis and death of my father from cancer, the break up of a long term relationship, changing universities and losing a year, graduating, finding and losing a job, finding another albeit crappier job) and hadn’t realized I was depressed until much later. It literally took not being physically able to get out of bed for three days for it to click that there was something very wrong. When I did get up, I promptly sought the help of my GP who referred me to a psychiatrist and put me on medication. I chose to go to therapy in addition to medication, which helped me reclaim my life.

So when I received the earth shattering news that I had cancer, I anticipated that depression might creep back into my life, so I wanted to be proactive, because frankly, life is too damn short to be depressed with or without cancer.screen-shot-2017-01-25-at-3-51-34-am

Initially, I was so focused on treatment and getting better, I didn’t think about how I felt. I knew logically that I should allow myself to feel whatever feelings I had, but what happened was the opposite. I felt so blessed that I was supported, loved, “healthy” and tolerating treatment so well that anytime I did start to feel “negative” emotions or feel sorry for myself, I’d quickly beat myself up for it. I mean how dare I feel bad when I was so lucky!! Once I completed treatment, I found myself with a lot more time, and consequently, a lot more time to think. This was when I began to feel the emotional fallout of my diagnosis.

As open as I was about my story, I always held back what I really felt. I went around with a smile on my face all the while hiding my fear and anger behind a mask. The only time the mask came off was when I was in the presence of other Young Adult survivors.

All the emotions that were suppressed around everyone else bubbled up and escaped when I would talk to other survivors. I was able to express my fears to them and not be afraid that they would fall apart, or become fearful for me, I knew I wasn’t burdening them like I would with my family. They got it, because many of them wore the same mask, they could see past the BS of “I’m fine” and they called my bluff.

To try to circumvent depression I was proactive, by seeing a physiologist. I went religiously hoping that I’d avoid the “blues” but it didn’t feel right, so sought help through my hospital. What I really wanted and needed was someone who had experience with cancer patients. The second time was the charm, but still I found myself to be extremely volatile. I imagine living with me at that time would have been akin to living in a minefield, you never knew when I’d explode.

I thought that depression would come to me in paralyzing sadness like it had before, that way I could recognize it, but it didn’t, it came to me in red hot anger. I don’t know where all the anger came from, but it burst out of me, for the trivial minute things, and was usually directed towards the people I loved most.

Again I was oblivious that I was experiencing depression until I wanted to physically hurt someone out of anger. It was that moment that I realized I needed more help. Talking wasn’t cutting it and as much as I didn’t want to take pills, I knew I had to. I am not advocating anti-depressants, they are not for everyone. In my case, they really help me function and regulate my mood so it’s not as extreme. In addition to medication, I seek counseling regularly, attend a Young Adult support group as often as I can, and meditate regularly.

There is no road map out there to navigate cancer*, no right or wrong way, you just do what you have to do to get to the other side, the truth is, what has happened is a trauma, a loss, a life altering event. Despite being grateful for being alive, we still have to mourn what we lost, whether its opportunities, time, or the ability to have a child, denying those feelings will only come back to haunt us. So please, allow yourself to grieve and feel. Seek help, talk to your peers, talk to your doctor, find a support group, reach out. Life is too short to be depressed but even cancer warriors get the blues.

*This statement is true for so many situations, from post-partum depression to the death of a family member to the end of a marriage. There is no right or wrong way to feel, but if you are not your normal self, talk to some one. If you are in crisis please call 911 or go to your local hospital.

AM

Resources:

Bell Let’s Talk  Dedicated to moving mental health forward in Canada, Bell Let’s Talk promotes awareness and action with a strategy built on 4 key pillars: Fighting the stigma, improving access to care, supporting world-class research, and leading by example in workplace mental health.

Canadian Mental Health Association  As a nation-wide, voluntary organization, the Canadian Mental Health Association promotes the mental health of all and supports the resilience and recovery of people experiencing mental illness. The CMHA accomplishes this mission through advocacy, education, research and service.

KidsHelpPhone  Kids Help Phone is a Canadian and world leader known for our expertise and continuous innovation as Canada’s only 24/7 counselling and information service for young people. Since 1989, our trained, professional counsellors have been listening to kids, often when no one else can or will. We are always there – supporting young people wherever and whenever they need us most.

Cracks and Raw Edges (Revisited)

I read yesterday that Carrie Fisher was laid to rest and that her ashes had been contained in a Prozac urn. It both mad me sad (that we lost an icon, childhood hero, and mental illness advocate), but made me laugh at her ultimate nose thumbing. It is a true testament screen-shot-2017-01-07-at-3-56-37-pmto her wit and humour. Carrie’s Leia was the first princess I ever wanted to be. I mean why not? She was plucky, beautiful, spunky and carried a blaster, what little girl wouldn’t want to be her?! Sadly I was ill equipped and lacked the follicular capacity to create those famous cinnamon buns, Cinderella it was. All humour aside, her passing reminded me that all of us struggle, sometimes it is invisible and private and sometimes it is right there in your face. Regardless of which it is, we all have the capacity and grace to pull ourselves up and make a comeback.

I don’t only live with one invisible stigmatized disease (lung cancer), but two. I also live with depression and anxiety. You may think that it came about after being diagnosed with cancer, but my first diagnosis occurred in my mid-20s. Since then, a lot has happened and understandably, depression has played a fairly significant roll in my life post diagnosis. I screen-shot-2017-01-07-at-3-43-10-pmhad an inkling that it may come around again post Dx and tried to head it off at the pass, but your body and mind have a way of telling you it needs help.

In my 20’s depression was a sleeper. It snuck up on me and slowly took over my life over the course of a year. In my cancer years, even being fully aware that it could happen again, it hit me like a truck with anger and bitterness, two emotions I didn’t need in my life or recognize as depression. Rather than allowing my life to be dictated by these volatile emotions, I sought out help. Lots of it! I went to Young Adult support groups, saw a psychologist, was part of an online lung cancer group, and finally took medication. I needed it all, and it helped.

Two years ago I tried weaning off my meds, I wrote about and shared the experience with The Cancer Knowledge Network. The entire experience was both eye-opening and rather terrifying. I share it again here because I want people to know that there is no shame in having a mental illness, and there is no shame in asking for help when you need it. It is not a weakness but rather a great strength and sense of self-awareness.

I have cracks and they are starting to show. Actually I’m crumbling. I tried an experiment, it failed. Or maybe it was a raging success, because I’ve come to the grim realization that for the rest of my life I will depend on anti-depressants to regulate my mood. I suppose that you should be careful what you wish for, because you just might get it…

I wanted to see how I would fare weaning myself off of my meds just to see what it would be like to feel normal. Maybe I’d be happy and satisfied and in control of my emotions, because for 4 years I’ve felt numb. It felt like I wasn’t experiencing my life as fully as I should. I missed the raw edges because I wasn’t sure if what I was feeling was as intense as it should be. I was happy and sad but never really happy or really sad, which is why I suppose I began taking meds in the first place. The highs and lows were just so extreme that I was a walking minefield.

Afterwards though I was even keel, but dulled somehow, at least I felt like I was dulled. So I thought was could it hurt?

It’s been almost a month and I’m feeling. Feeling angry and bitter, sad and depressed. I actually hate myself right now. I don’t like wallowing in self-pity, but that’s exactly what I’ve been doing. I want to curl up into a ball and sleep. I want the world to go away and just leave me alone. I hate feeling this way! I hate that I can’t be happy for others without feeling sorry for myself. I hate thinking that my life has been a series of tragedies that I just happen to scrape through. I hate thinking that I should be happy because I’m alive. I hate not getting what I want, what I’ve worked hard for. I hate self-pity!

So on Monday I will fill my prescription again and hope that the edges will become dulled so I can be the person I was a month ago before this brainchild of mine, before I became myself. I will become comfortably numb like the song says and I will feel…less. I won’t hate myself so much, and I’ll go on. I just wish I didn’t need pills to keep me from being me, a me who apparently is bitter and angry even if I am grateful to be alive, because sometimes even that isn’t enough.

It is my hope that some one reading this will reach out if they are struggling, because sometimes it is just too much to hold, and you need someone to help you let go.

AM

Resources: screen-shot-2017-01-07-at-3-45-59-pm

CAMH

I Need to Talk to Someone

Mental Health Help Line

Mental Health Facilities 

 

Stability ain’t what its cracked up to be!

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.

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.

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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

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.

 

 

 

Scanxiety and my irrational mind

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

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

 

These are my Scars

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

Acting on Awareness

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Fall is coming

There’s a crispness to the air that signals Summer’s end. Days are getting shorter and the season of awareness is upon us.

I’m tired of awareness. I mean great, we are aware. So what! I’ve learned that being aware of something doesn’t mean one will act. Now there’s where change happens whether it’s research, funding for research, support locally/provincially or federally for programs, better diagnostics, less invasive procedures, whatever, change takes action!

I think it’s safe to say we are all aware cancer exists, and depending on what day or week or month it is which one or ones we are supposed to be aware of or we’d be living under a rock. But what of it? Are we actually doing something about it? Do we call a local cancer center to volunteer? Do we check on our neighbour who’s I’ll? Do we sacrifice our precious time for a cause that has touched us? Or are we simply aware that something exists?!
Action doesn’t require a lot. We can do in small ways. After all, the only way to eat a cake (mmm cake) is one bite at a time. So why is it that acting is so hard?

Often I think people shy away from action because they think it will take too much time. Or they thing that the problem is too big and that one small act of kindness won’t really make a difference. They are wrong.

How long does it take to say hello? How long does it take cook a meal? How long does it take to check in on a friend?

Oh look you have acted.
Change happens with small acts. Before you know it drops in a bucket turn into floods of action.

Ways you can act*

  • Yard work/house work for friends/neighbors
  • Driving friends/family/neighbors to appointments/to get groceries/whatever
  • Babysitting/ driving kids to school/sports/daycare
  • Volunteering
  • Lobbying for change
  • Donation money/goods/time
  • Being supportive by listening and being a friend

*These don’t have to be cancer related either.

So in this season of awareness, act!

If you really can’t act and want to use your wallet (also good) try to support causes/organizations who use a majority of their funds to actually do what they say. So many big organizations (I won’t mention names) have a great warm and fuzzy cause and are very visible but use a lot of their funds to cover their over head costs which means those they are there to serve don’t see a lot of those donations. Sometimes small causes/organizations can and will do more. Sure you have to look for them but if you really want to make a change sometimes small and grassroots is where to go. You can if you are savvy see where the money goes.

AM