ADVOCACY – These Are My Scars

#GivingTuesday

November 29, 2017 These are My ScarsLeave a comment

Screen Shot 2017-11-28 at 9.25.44 PM About a year ago, I wrote about Awareness and Action, That they are vastly different things. One is the actual act of something, the other is passive, and involves doing nothing. That’s right, nada, Zilch. Zero things are done. Bupkis. So in the dying hours of this Giving Tuesday, I want to remind people of just that. We should act and give, not just today, because we have been sold on a “gimmick”, but because we want to. Often even every day. It can be big or small. It also doesn’t have to be money, it can be time or a good deed. We have gotten too used to throwing awareness around, that nothing really happens. Lots and lots of inaction.

So why do we need a reminder?! Goodness and giving should be a no brainer, right?!

Is it that we get so wrapped up in our own drama, that we don’t see, or make time? Are Screen Shot 2017-11-28 at 9.26.08 PM we keeping score? If we are, then we shouldn’t, because life owes us nothing.

So I’m reminding you, Awareness is great, be aware, but also act.

I’m leaving this here, because I have to.

Be kind. Be good. Be present. Be generous. Give. Be well.

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Organizations I love.

Lung Cancer Canada

Young Adult Cancer Canada

First Descents

Save Me Dog Rescue

Look out Yokohama

August 22, 2017August 22, 2017 These are My ScarsLeave a comment

Screen Shot 2017-08-22 at 4.14.12 PM It has been a little while since I have posted and much has happened since the last post. One of the most notable things is, I was selected and awarded the IASLC’s Patient Advocacy Travel Award. This award allows me to travel to Yokohama, Japan for their annual World Conference on Lung Cancer. JAPAN!!! I cannot tell you how excited I am. For one, I get to travel to a country that I have always wanted to visit. I get to soak up the latest information on lung cancer research and practice. I get to network with other patients, advocates and experts in the field of lung cancer research, and I get to go to Japan. Have I mentioned I’m going to Japan!? Screen Shot 2017-08-22 at 4.05.37 PM

Seriously though, I want to take this opportunity to share what the IASLC does and let everyone know about their Foundation Cancer Care Team Award.

The International Association for the Study of Lung Cancer (IASLC) is the only global organization dedicated to the study of lung cancer. Founded in 1974, the association’s membership includes more than 6,500 lung cancer specialists in over 100 countries. IASLC members work to enhance the understanding of lung cancer among scientists, members of the medical community and the public. IASLC publishes the Journal of Thoracic Oncology, a valuable resource for medical specialists and scientists who focus on the detection, prevention, diagnosis and treatment of lung cancer.* For their mission statement, more information and resources, please go to their website.

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Nominate Your Care Team Now!

The IASLC is excited to announce the creation of a new award, the IASLC Foundation Cancer Care Team Award, designed to recognize outstanding patient care and honor multidisciplinary teams working together to provide the highest quality cancer care.

Nominations will be accepted from all over the world. The winning team will select one representative to attend the IASLC 18th World Conference on Lung Cancer, for which IASLC will provide monetary travel support. Learn more and nominate a team for the award. Please contact them with any questions: membership@iaslc.org.

As always, be well.

XO AM

*taken from https://www.iaslc.org/about-us

World Lung Cancer Day

August 1, 2017August 1, 2017 These are My Scars1 Comment

Screen Shot 2017-07-31 at 9.39.03 PM

Screen Shot 2017-08-01 at 12.55.01 AM — The Forum of International Respiratory Societies

Honour, Unite, Inspire. It’s 12:01, the dawn of the 6th World Lung Cancer Day and I struggled trying to write this. I wondered if I should write about numbers and facts, or maybe about how lung cancer is the most common cancer globally*. That of the estimated 1.8 million new cases (in 2012)*, most (58%) occur in less developed countries*. That it is the most fatal cancer globally*. However, it might be more meaningful to tell you what “Honor, Unite, Inspire”, means for me, a lung cancer patient.

Screen Shot 2017-08-01 at 12.55.19 AM — Pan-African Thoracic Society

I write and share about living with lung cancer is because, I truly feel that if my experience, struggles and joys can touch or inspire just one person, then I have done my job as a good human. I think back to when I was diagnosed, and throughout treatment, I felt so very alone. I think of all the people out there with that same diagnosis, and how they too must have felt isolation and loneliness. I think about all the questions and fears I had, and no one to advise me, or let me know that what I was feeling was normal. I needed blogs like this, connection to patients who have survived and were surviving. Back then, it was hard to find. Now, not so much. Thankfully, but we still have work to do. Its for this, we have a Day like today.

Screen Shot 2017-08-01 at 12.55.27 AM — American Thoracic Society

Everyday I am blessed to see, I get to honour those who have given me strength, those who live with this disease, and those I have lost to it (sadly there are so many). Their courage and grace, push me to be better and instil me with passion to advocate for others living with this disease. It helps me channel anger in to action, frustration into hope. One of the reasons I advocate is so that those who are newly diagnosed don’t have to. So that they won’t fall into the cracks, and so that they don’t have to face the stigma of their diagnosis. There it is, the “S-word”, that assumption that lung cancer is our fault. That deadly misconception, that impedes compassion and funding. That idea that adds unnecessary stress

Screen Shot 2017-08-01 at 12.56.10 AM — European Respiratory Society

and shame on a patient and their family. It is for this, we need a Day like today.

It has been over 8 years since my original diagnosis, I know that I am alive in part to where I live. I am very lucky to live in a country that has a health care system that is accessible to all of its residents. I know it isn’t perfect, we have problems too, but its still pretty damn good.

Screen Shot 2017-08-01 at 12.56.21 AM — American College of Chest Physicians

Therefore, it would behove me if I didn’t point out the disparity between first world nations and developing nations. We are often so focused on our own problems, that we forget to think of those of others. Here, we might concern ourselves with accessing the latest and greatest treatments, there they may worry they will get treatment at all. Many countries don’t have the infrastructure and provide basic care, people may not get

Screen Shot 2017-08-01 at 12.56.39 AM — Asian Pacific Society of Respirology

a proper diagnosis, let alone treatment that costs thousands of dollars a month. Their governments like ours focus PSAs on smoking cessation, the difference it that is their man way to “treat” lung cancer, after all you don’t have to treat the patients you don’t have. Here we concern ourselves with late effects or secondary cancers, there patients may worry they and their family will be shunned by their community, because there they think cancer is contagious. It is for this, we need a Day like today.

Until, we can ensure patients everywhere are being screened or

Screen Shot 2017-08-01 at 12.56.45 AM — Asociacion Latinoamericana De Torax

diagnosed quickly and comprehensively, are receiving the appropriate standard of care and support, are receiving as much funding as every other common cancer group, and we have either increased the survival rate to above 50%, or reduced the number of new diagnoses, we will need a Day like this.

*Source WLCD Fact Sheet.pdf, http://www.firsnet.org/news-and-actions/86-forum-of-international-respiratory-societies-continues-grassroots-world-lung-cancer-efforts

When Worlds Collide

May 5, 2017May 5, 2017 These are My ScarsLeave a comment

Screen Shot 2017-05-04 at 8.30.28 PM Today is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”

It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.

Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If yo Screen Shot 2017-05-04 at 9.28.07 PM u are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.

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I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.

Screen Shot 2017-05-04 at 11.43.49 PM — Look at all those beautiful survivors!! Also that’s Katie hope dealer extraordinaire 🙂

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.

I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.

ALKies

All the YA’s except me oops 😦

Young Adults W/ LC

It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.

I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath. Screen Shot 2017-05-04 at 9.22.20 PM

Be Well and May the 4th be with you.

Indivisableguide.com

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

December 17, 2016December 17, 2016 These are My ScarsLeave a comment

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.

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.

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-am done 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.

*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

November 21, 2016 These are My ScarsLeave a comment

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.

Faces of lung cancer

Adenocarcinoma drivers

Images like this always blow me away!

Clinical trials save lives!

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.

It 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!

The Need for Lung Cancer Literacy

November 5, 2016 These are My ScarsLeave a comment

November 1^st 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-pm Every 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-pm If 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.

Its #LCAM

November 2, 2016 These are My ScarsLeave a comment

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.

ASCO Overview Day 1 & 2

June 5, 2016June 16, 2016 These are My ScarsLeave a comment

Well I made it! By the time I got to my hotel after taking the “L” into the city, I wasn’t able to attend any of the sessions presented on Friday June 3^rd, so I did what any keener would do and went to the McCormack Center to pick up my registration package and scope out the place. The place was HUGE!!! Still undaunted I found my way to registration and afterwards went to check out the Advocates lounge. It was here I found some of my tribe.

There is a truly amazing phenomenon that happens when you meet others like you. There is an immediate kinship and bond forged through mutual experience that immediately makes friends out of strangers. Mind you it helps that many of these individuals are my online heroes and I follow them on Twitter, chat, or through their blog. Who ever said you shouldn’t meet your heroes was dead wrong! I was immediately swept into their kindness and invited to dinner. How could I not love these people, when we have both cancer and food in common?!

Exhibition Hall

Lung Session

The ASCO Madness, just you and 40000 friends

Day 2 was in earnest my first day at the conference. As my first time here at ASCO, I can honestly say I was overwhelmed by the sheer enormity of not only the facility, but with the number of participants, presenters and exhibitions. To give you an idea, I walked 10km yesterday and that was only in the McCormack Center. I was most interested in the lung cancer track, for obvious reasons, so it was a busy day. Poster sessions began at 8am and ended at 11, followed by oral sessions at 1 and at 3. In between, the advocacy lounge generously provided lunch. Because ASCO is so huge, many sessions overlapped and besides being in two places at once, I decided to view some of the sessions at a later time (thank goodness all sessions are recorded). At 5, I attended Lucy Kalnithi’s “book club” session where she discussed her late husband Paul’s book When Breath Becomes Air. It was a beautiful insight into their lives as patient/supporter and as clinicians. From there, I ran up to the official ASCO Tweet-up where I got to meet a few more individuals I know from the web. All in all, it was an eventful and full day at the conference.

Before falling into bed, I looked over all the handouts I had collected and planned my day for tomorrow.