Category: Awareness

Just Breathe…for Elizabeth

These are My Scars1 Comment

One of the biggest pitfalls of surviving this horrible disease for 8 years is that you lose a lot of friends along the way. I’ve lost too many to count. Every single one of those people is a scar on my heart.screen-shot-2017-02-26-at-5-35-29-pm

After I was diagnosed with cancer, I longed for connection, someone somewhere that could tell me I wasn’t alone. I found my tribe online. Actually I found a few tribes because my experience like many out there didn’t fit a neatly tied up definition of the cancer experience. I wasn’t just a young adult, or a lung cancer patient, but a young adult with incurable ALK+ lung cancer. So eventually I found what I was looking for. I cannot begin to tell you how powerful it is to connect with people who have walked in your shoes.

In many instances I have never met the people I talk to, we tweet, chat, post to web boards, blog, etc. but in those communications we have forged a bond of strength, empathy, support and friendship. In all of my interactions with others like me, whether in person or online, I find that these patients have an uncanny ability to cut through the niceties and small talk and really get down to the humanity of this disease. They know the fear, anxiety, sense of loss, empathy and mutual respect for another’s journey, because they too have been through it. It is because of that shared experience that we connect on such a profound level. I see myself reflected in them and they see themselves reflected in me. It is a connection that many of us don’t have with even our loved ones, because as much as they love and support us, they just simply don’t know what it is like to live with cancer.

Being a part of these communities is such a privilege. So often we share things with each other that we can’t share with even our closest friends and loved ones. It is truly a unique and beautiful thing to have such friends, but these relationships come with a price. It is the double-edged sword of sharing such deep connections – the grief and sense of loss when one of our friends passes away.

Someone once asked me how I can be so sad for someone I’ve never met? The answer is simple. I am mourning for them, their families and friends. I am mourning the loss of potential happiness and love and life that could have been. I am also mourning for me because at some point it will be me. When one of our friends dies, we are reminded very explicitly that we too are vulnerable. For a brief time, the light and fight and hope we have nurtured is extinguished and we are broken. The loss of “virtual” friends results in a very real sense of loss and sadness. We should treat these feelings the same way we would if we lost a “real” friend. Feel the sadness, talk about your feelings, honour your friend’s memory, and if needed seek support, within your communities and outside of them.

Yesterday, the world lost a tremendous  light.

screen-shot-2017-02-26-at-5-25-12-pmShe was 27, a young mother who beamed when talking about her 18 month old miracle boy. She was an incredible advocate speaking out for the lung cancer community and raising awareness and funds for support programs and research. She like me was a teacher and a young face of lung cancer.

Elizabeth also known as From Lizzie’s Lungs was diagnosed just shy of two years ago, she was celebrating being a newly wed. She and her husband were expecing a new arrival when a nagging health concern turned their lives upside down. Lung cancer. A rollercoaster ride no one let alone a 26 year old should face. She faced every challege with stride and with grace. She was a force!

Today I mourn Elizabeth. I mourn for her beatiful son, I mourn for her loving and supportive husband, I mourn for her parents and family who loved her, I mourn for her friends, and I mourn for us.

Fly with the angels Elizabeth. Just Breate.screen-shot-2017-02-26-at-5-27-34-pm

AM

 

 

 

 

 

 

Even Warriors Get the Blues #BellLetsTalk

These are My Scars51 Comments

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.

We Aren’t Rivals, There’s Just Lots of Work To Do!

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Its snowing again and I can’t sleep.

Maybe its because I can’t stop thinking about an article I saw online. Even the openning lines seem to fan the fires of competition, when in most cases there isn’t any. My knee jerk reaction is that this is lazy writing. It builds conflict between disease groups by providing “sound bite” comments as proof and then complete ignores the issues faced by patients.

Let me begin by saying, I think all cancer is awful and never once have compared myself to my peers whether in the lung cancer world, young adult world, or in the cancer world at large. I have lost too many friends to count from every type of cancer, perotid gland, ovarian, adrenal gland, oglidendroma, etc., so I really try not to discriminate.

Articles like the one above piss me off because they skirt the issues, so let me make them clear and plain for all to see.

  • screen-shot-2016-12-17-at-6-18-13-am
    NIH funding

    Not all cancers are funded equally – That means funding for research and publication of said research is laking in many cancer groups. When we compare disease groups in this sense, we are merely trying to state the disparity. For purpose of this arguement, I will compare lung cancer funding to breast, and prostate cancers. The facts are that for every patient who died form their respective disease, a lung cancer patient “received” $1479 in research funds, a breast cancer patient “received” $19250, and a prostate cancer patient “recieved” $9432, I don’t imagine those numbers have changed much *since 2012. screen-shot-2016-12-17-at-6-23-51-am

Just looking at the above, it is evident that there is a large gap in funding. This means researchers in the breast group are able to fund, publish, and present more research. One should also ask if there is a disparity within each disease group. Is there research being screen-shot-2016-12-17-at-6-23-41-amdone on metastatic patients, or patients who are outliers? I imagine they feel neglected too. In the U.S., part of this problem may have just been addressed with the signing of the 21st Centuries Cures Act. The rest of the world however  may not have a course correction, so we need to be able to recognize that in order to have equality, we need to point out the inequities. Then instead of cutting the pie smaller, we need to bake a bigger pie. We need to break down barriers, and share information. More and more we see that the driving mutations in different disease groups are the same.

  • Access to patient resources is different – As a patient trying to access a support group or assistance with services, I can tell you there is very little out there for patients with some cancers or diseases, where as there can be a glut for others. Even as a young adult with cancer it is difficult to access the services needed to cope with a cancer diagnosis and the reprucussions of treatments. The advent of online groups and social media is wonderful because people can connect, but groups can often be hard to find or “word of mouth” where as I can almost guarantee there will be a breast or lymphoma group in every centre. Again, the comparisson is made to illustrate the inequity, not to spur on competition.
  • Perception is different – I can attest to the stigma of having lung cancer. Any and almost every time I inform someone that I have lung cancer, the first thing I am asked is whether I was a smoker. I have also had people let me know about services they provide in the cancer centre when I am wearing my pink scarf, only to tell me how unlucky I was not to actually have breast cancer (I swear this happened) once informed I had lung. The truth is, most people assume if you got lung cancer, you must have gotten it from smoking. This illustrates the need for the lung cancer community to educate the public (and some medical personnel) that there are many risk factors to getting lung cancer (Radon, genetics, the environment, having lungs, smoking, unknown factors), and that smoking is a risk factor for many diseases, like heart disease, tooth decay, oral cancers, COPD, etc. The truth is, there is a stigma attached to having some cancers. Let’s get it straight, NO ONE DESERVES CANCER!!!!
  • Cancer is not one disease – The word cancer represents about 100 different diseases, and each one varies with the individual it effects. We are just now learning what drives some cancers, but there is so much that isn’t known. How can anyone possibly say all cancer is the same, no it isn’t. Not in the way it is diagnosed, staged, treated, maintained, long term side effects, recurrance rates, mortality, etc. What is the same is how profoundly it effects every single person it touches.

That is why I’m pissed off. They totally ignored all of those things and made it look like we can be catty children comparing ourselves for some sympathy prize, well I’m calling bullshit.

Cancer patients, at least the ones I know, and I know a few, young and old, from all over the planet are so far from this picture they paint that if they saw this article I think they’d either be hurt, apalled, or laugh because they are the most intelligent, compassionate, generous, kind, interesting people I have ever had the privilege of meeting. They have been through upheaval; poisoning (through radiation or chemo); some have been ripped open; they have gone through therapy (physical or psychological); have gone back to work; to school; retired; have traveled; become advocates and educators; become researchers; become parents (grand parents); become husbands or wives; recurred; and some sadly have passed on. So please give us more credit that calling us rivals.

Rather than write a bait-click article, do a little digging and write about the issues.

AM

*Figure 3 & 4 taken from Lung Cancer Canada, Faces of Lung Cancer Report: Research and Analysis of the Lung Cancer “Waiting Game”, 2016

 

 

Magic Happens

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Something magic happens when you gather lung cancer patients together!

On the evening of Thursday November 17th Lung Cancer Canada hosted their annual Evening of Hope Gala. What was different this year was that our Gala would kick off our first Hope is Here Patient Summit.

Views from the 6 or 24th floor.
City Hall
Dr. Wheatly-Price
Me and the lovely Deb Maskins
Dr. R Juergens, Casey Cosgrove, and Dr. N Leighl
Our hosts with the most!

We welcomed Canadians from all over the country to the first ever lung cancer patient summit for a one-day conference held at the Sheraton Centre in downtown Toronto. The Summit featured educational break-out sessions, inspirational speakers (including myself and other patients), and the opportunity to connect with people from all over Canada who have had a lung cancer diagnosis.

The day was opened by our President Dr. Wheatley-Price. I followed him in welcoming our guests by sharing a bit about my story and all the breakthroughs in treatments and diagnostics that have been approved and are in practice since I was diagnosed in 2009. Our  morning program began with New Advances in Lung Cancer and covered a number of topics: Screening and Surgery; Radiation Therapy; Immunotherapy and Targeted Therapies; Future Direction of Lung Cancer; and a question session moderated by Dr. Wheatley-Price.

Clinical trials save lives!
Adenocarcinoma drivers
Images like this always blow me away!
Faces of lung cancer

Dr. Gail Darling gave us a comprehensive overview of the roll-out for Ontario’s Early Screening Lung Cancer Program for high risk populations. This is fantastic news because all the research surrounding early detection programs is very positive. The NIH’s National Lung Screening Trial (NLST) 2011, showed a 20% decrease in mortality in the screened group. That may not seem like much, but consider that for the same number of breast cancer patients screened there is only a 3 to 4% decrease in mortality. They showed that the number of lung cancer patients needed to screen to save one life is 320. For colon cancer the number is 600 and for breast it is 1000, proving early screening for this targeted population is truly effective and does indeed save lives.

Radiologist Dr. David Palma provided a very passionate presentation about radiation in populations that may have previously been denyed an opportunity to have radiation as a viable option after metastasis. He also championed the idea that in order for patients to be partners in their care and recieve the best care, they need to know how to advocate for themselves, decipher reports and how to compare their care against published guidelines.

Dr. Rosalyn Juergens gave us the low-down on Immunotherapy and Targeted Therapies. A very informative session illustrating complexity of lung cancer and the variety of new therapies designed to treat them. She discussed the numerous targeted therapies available for both EGFR and ALK, but now also for ROS1 and other driver mutations. Immunotherapy is another area where a number of agents are being tested and approved for use in patients with great success and lasting effects. Finally, there is hope for lung cancer patients.

With our brains and notepads full, it was time for a break and a bit of socializing. Following the break, we continued with the McAlpine’s who shared their story with us. The crowd was brought to tears as Ian and his wife Cathy shared the ups and downs of accessing treatment. To my amazement, I realised that I had seen them many times and that we had shared a doctor. Their tenacity brought them from British Columbia to Ontario to get care, and I am so happy that the journey has been successful.

My former oncologist Dr. Jeffrey Rothenstein gave his presentation about participating in and accessing clinical trials. According to his presentation, only 3 out o f 100 patients take part in clinical trials and even fewer lung cancer patients participate. What is mindboggling is that 85% of patients aren’t aware that clinical trials are viable treatment options. I can attest that clinical trials save lives! I literally wouldn’t be alive today if it weren’t for that option.

My current oncologist Dr. Natasha Leighl presented her perspective on treatment access and cost. What was great about this presentation was that it wasn’t just literal cost of medications that was discussed, but the toll on the family, inequality of access, and a number of other factors that affect patients after a diagnosis of lung cancer. I had no idea that Canada was second behind the U.S. in out of pocket drug costs, and that 91% of cancer patients will suffer from financial toxicity. She also highlighted the fact that Canada is much slower than other countries when it comes to drug approval and funding. This was a focus of Lung Cancer Canada this year in their 2016 edition of Faces of Lung Cancer.

Before we dispersed for lunch, my friend and our Vice President Casey Cosgrove discussed advocacy and community involvement. Illustrating both the need for volunteers and advocates and ways to help. I loved his point that not everyone is good at or wants to do everything, but if we do what we’re are comfortable with, we can help in our own way.

During our lunch break, our keynote speaker Darrell Fox spoke to us about his older brother Terry, and the legacies Terry Fox left behind. The Terry Fox Foundation which has raised over 700 million dollars since Terry’s death in 1981 and the Terry Fox Research Institute. The TFRI is funding the Pan-Canadian Early Lung Cancer Detection Study. Darrell also shared his father Roland’s story. Rollie as he was known passed away this year from lung cancer making the Fox family a part of our community. It was a truly emotional speech and not many of us had a dry eye.

Terry Fox’s Legacy
Mr. Darrell Fox

The remainder of the day consisted of breakout sessions that included sessions in nutrition, breathing and exercise, financial planning and palliative care. Each session was very informative. The nutrition session provided ideas and tips to quick healthy meals that cater to health and healing. The exercise and breathing session demonstrated activities that one could do at home and that could be adapted to differing abilities. The session was sponsored by Wellspring who hosts a 20 week exercise program for patients. The financial planning session provided tips to help plan while ill, or to prepare incase of death. Finally, the session on palliative care discussed the variety of options and that palliative care isn’t just about dying.

After regrouping it was time to close the day with a photo and good-byes.

img_4746It is impossible to describe the feeling when you meet someone else like you.Therefore unimaginable when you meet 60. All I can say is my heart was full and I am so privileged to be a part of such a wonderful event. This was Lung Cancer Canada’s first Hope Is Here Patient Summits, I know it won’t be the last. I thank everyone in the office and all the volunteers and sponsors for everything you did!

AM

 

 

A Breath of Fresh Air

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We must accept finite disappointment but never lose infinite hope.

-Martin Luther King Jr.screen-shot-2016-11-12-at-4-46-08-pm

For a very long time, lung cancer research had languished and little improvement occurred in treatments and patient care. Most required chemo, radiation, or invasive surgery, or perhaps a combination of all three. Despite these interventions, many patients died. It was a pretty hopeless time.

As recent as 7 years ago, targeted treatments were mostly theoretical, and immunotherapy a pipe dream. Today, both are realities and saving lives. The winds of change are blowing and hope is in the air.

I can tell you what it feels like to come to terms with a terminal illness, how difficult it is to wrap your head around dying before you are 35. I can tell you what it feels like to be written off because there really isn’t anything out there that will really help. But, I can also tell you about hope. Hope saved my life.

In the 7 years since I was diagnosed and 5 years since I was deemed “terminal” so much has happened in lung cancer research. In those days, physicians only really knew about two potential genetic drivers, now we know of 25 and learning of more everyday. In that time, pharmaceutical companies have developed targeted kinase inhibitors (TKIs) that target specific genetic anomalies or fusions such as EGFR, ALK, and ROS1 and testing others like MEK, KRAS and Her2. These compounds are better known as targeted therapies and are far more effective in treating patients with these targets than chemo. In many cases, these treatments are pills that one takes daily, they have milder side effects than chemo and can allow patients to live a fairly normal life. We have come so far in this area that second and even third generation drugs are being developed to address resistance to earlier drug compounds.

Another area that has revolutionized treatment is immunotherapy. Just in the last few years the FDA approved two immunotherapy agents for both non-squamous cell lung cancer and squamous cell lung cancer. These agents boost the use the body’s own immune system to target and kill cancer cells. For the first time in many years there is real hope for patients that have squamous cell lung cancer one of the most aggressive and deadly types of lung cancer.

In addition to new treatment options, and the discovery of numerous genetic drivers of lung cancer, diagnostic techniques and surgical interventions have become better and less invasive for patients. The use of computerized tomography (CT scans) and positron emission tomography (PET scans) allow physicians to see anomalies at earlier stages and allow for more accurate diagnoses. In addition to this, screening of high-risk populations using low dose CTs allows physicians to follow these patients and diagnose them at earlier stages of the disease, increasing survivorship and quality of life. Not only does this save lives, but it also saves money as these patients require less intervention and can be cured when diagnosed at stage 1 or 2, where surgery alone is curative. Video-assisted thoracoscopic surgery or VATS allows patients to undergo surgery, most often a lobectomy (removal of one or more lobes of the lung) with minimal invasion and less risk of complications from surgery, making recovery quicker and easier on the patient and their caregivers.

All these breakthroughs have been achieved despite minimal research funding allocation by governments and private donors. Regardless, patients have a real reason to hope as the dedication of researchers and physicians who are making these discoveries are ushering in a new era in lung cancer research and treatment. One can only imagine the possibilities if there was even small increase in the amount of funding given to this disease group. One can always hope.

screen-shot-2016-11-12-at-4-48-37-pm

The Need for Lung Cancer Literacy

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November 1st marked lung cancer awareness month in Canada and the US. It received little fan-fare and still largely goes un-noticed. After all we don’t have cute logos, fancy ribbons, big marketing campaigns, and many media outlets just don’t pick up the lung cancer story. So what do we have? We have numbers, we have stigma, and we have hope.

screen-shot-2016-11-04-at-8-16-07-pmEvery year 28,4001 Canadians and 221,2002 Americans are diagnosed with lung cancer. Of those diagnosed, 20,8003 in Canada and 157,4994 in the US will have their lives taken from this disease. The truth is that while many other cancers have improved 5-year survival rates, lung cancer still remains one of the lowest at about 17%5.

One of the many reasons for this in my humble opinion is the lack of lung cancer literacy, or for lack of better words awareness. With most diseases, awareness doesn’t always mean action, but for us, awareness and education is key in convincing people to act. Most North Americans think that breast cancer is the largest cancer killer, but in fact, it is lung cancer. Actually, lung cancer takes more lives than breast, colorectal, and prostate cancers combined6.

screen-shot-2016-11-04-at-8-16-44-pmIf one has asked me what type of cancer I thought I may get in my lifetime, seven years ago before lung cancer happened to me, I would have thought it would be breast cancer. After all, I am a woman with breasts and like many, I didn’t think that because I was human and had lungs that I’d be at risk. The reality is, one of the fastest growing segments in lung cancer is the population of young, non/never smokers (17.9%)7. Add to that the population of people who had previously quit smoking (60%)8, and you begin to get a different picture of lung cancer.

The sad truth is that lung cancer is usually diagnosed in late stages (Stage 3 and 4) meaning the disease is already advanced, complicated and difficult to treat. Another reality faced by patients and their caregivers is the stigma associated with the disease. We have known the connection between tobacco products and cancer for decades, the problem is the widespread assumption that it is the only cause of lung cancer, leading to a blame the victim mentality. The truth is, the greatest risk factor for getting lung cancer is having lungs. That of course is followed by tobacco, radon, genetic and many unknown factors.

Lung cancer is not just one disease, it is far more complicated than was once thought. It is categorized as small cell (SCLC) or non-small cell (NSCLC), but can then further be divided by cell type and beyond. In the past decade alone, they have discovered numerous genetic drivers to lung cancer, each requiring a treatment plan that caters to the nature of the cancer.

Despite the abysmal mortality rate and the growing number of newly diagnosed patients, funding for lung cancer research is grossly disproportionate. In the US the National Institute of Health Research (NIH) calculated the dollars allocated per death across many disease areas and found that lung cancer received only $1479 as compared to $2131 for heart disease, $5,804 for colon cancer, $19,250 for breast, and $9,647 for all cancers9. In Canada, only 7% of cancer specific government research funding is allocated to lung cancer but what is worse is less than 1% of private cancer donations goes towards lung cancer research10.

It may sound very doom and gloom, but there are many rays of hope. Through the dedication of researchers, oncologists, nurses, pathologists, patients, and so many more, a number of breakthroughs have been made in diagnostics, less invasive surgical options, revolutionary treatments such as targeted therapies and immunotherapy and are being used in clinics today. The winds of change are blowing and with more awareness and research dollars, real change can be made. You can help by donating to lung cancer research, volunteering at a local organization, being compassionate to patients, or by sharing this article.

References:

1. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

2. American Cancer Society. Cancer Facts & Figures 2015. Atlanta: American Cancer Society; 2015. pp.4.

3. Canadian Cancer Society – 2016 Canadian Cancer Statistics. Available at: http://www.cancer.ca/~/media/cancer. ca/CW/cancer information/cancer 101/Canadian cancer statistics/Canadian-Cancer-Statistics-2016-EN.pdf?la=en. Last accessed on October 19, 2016.

4. Centers for Disease Control and Detection: Deaths: National Vital Statistics Report, Final Data for 2012. NVSR Volume 63, Number 9. 85 pp. (PHS) 2014 – 1120, http://www.cdc.gov/nchs/data/nvsr63/nvsr63_09.pdf

5. Lung Cancer Canada. 2015 Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

6. Lung Cancer Canada. 2015Faces of Lung Cancer Report, Toronto: Lung Cancer Canada, 2015. pp6.

7. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

8. Centers for Disease and Prevention. Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults- United States. 2006,” November 9, 2007/56(44): 1157-1161, Table 2.

9. Funding Source: http://report.nih.gov/categorical_spending.aspx Source of Actual Deaths: Centers for Disease Control and Detection: Deaths: National Vital Statistics Reports, Final Data for 2012. NVSR Volume 63, Number 9. 85pp. (PHS) 2014 – 1120 http://www.cdc.gov/nchs/data/nvsr/nvsr63/nvsr63-09.pdf

10. Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.

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

 

 

 

 

 

 

 

 

 

 

Hope is Here!!

These are My Scars1 Comment

One of the greatest joys since being diagnosed has been volunteering with Lung Cancer Canada as a sitting board member and co-chair of their programs committee. I know too well how overwhelming and isolating it is having cancer and more over lung cancer so being able to connect and learn with others like me is a Godsend. The work LCC does is amazing and I am so proud to be a part of their organization.

For the first time, LCC is hosting a patient summit in conjunction with their annual Toronto Evening of Hope gala, it will be a wonderful opportunity to connect and learn with others with lung cancer.

Please consider attending or sharing this with a loved one.

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If you are free on Novemver 17th or 24th* from 6-9pm consider kicking up your heels with us at our annual Evening of Hope. Tickets are $100 and proceeds go to support our programs. For mor information please go to http://www.lungcancercanada.ca

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Please join us. *this event is in Ottawa Ontario

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