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#GivingTuesday

Screen Shot 2017-11-28 at 9.25.44 PMAbout 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? AreScreen 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

T’was the Evening of Hope

November is Lung Cancer Awareness month and tonight is Lung Cancer Canada’s annual  Screen Shot 2017-11-23 at 4.18.11 PM.pngCasey Cosgrove who was the MC and truly synonymous with this night. Casey was such an integral part of this organization and made a huge difference to so many people dealing with lung cancer by not only sharing his own experience but by being a relentless advocate for the cause. On a very personal level he was a dear friend who I admired and miss very much. My heart is hurting.

Tonight won’t be the same without Casey but we will carry on best we can and try to continue the work he was so passionate about.

The above was written by my dear friend Roz Brodsky (A 3x lung cancer survivor), her words captured my feelings so well, that I asked to share them.

Screen Shot 2017-11-23 at 4.26.28 PMI wish I could say that “if you didn’t know it was Lung Cancer Awareness Month, you’re living under a rock!”, but that is not the case. Most people I have asked were surprised. Well of course they were, we don’t have white/pearl/clear ribbons everywhere. We don’t have cement trucks with our message spread across it; we don’t really have walks, or Runs for the Cure. What we have is misinformation, apathy, and inadequacies.

I can’t tell you how many smoking cessation ads I have seen. Horrible in their depiction and so stereotypical that they add to the stigma and apathy. I am all for helping people quit, I personally believe we should treat an addiction, like an addiction, not a bad habit. I also think these ads should be part of a campaign strictly for cessation and illustrating ALL the diseases it is a risk factor for.

The sad part of associating these two things is that patients like so many others, and myself have to defend ourselves or tell people we are “Non/never smokers”. We shouldn’t have to, because we both have the same thing in common, lungs. The point being, it can happen to anyone at any age.

I have been radio silent this #LCAM because I have so much to say, but am so discouraged and tired of banging my head against the wall. I don’t know what it will take? It’s not the lives lost 1.59 million globally, or as my friends in the US will tell you #433aday, which is the number of Americans that die daily from this disease. We would take notice if a jumbo jet plummeted to the ground, right? Why can’t we see that this is happening daily!

I have posted a statistics laden post the last few years; I’m not going to do that again. What I Screen Shot 2017-11-23 at 4.26.14 PMleave you with is, that Lung Cancer unbiased, it comes for everyone, regardless of age, sex, creed or colour, because we all have lungs. Anyone can get lung cancer.

Be Well

AM

Remembering Lizzie

I have been struggling as of late to summarize and put to words my trip to Japan, so I will post that in another post, until then, please read this. Lizzie was a tremendous spirit and although I had only ever spoken to her via email and phone, he passing shook me to my core.

Be well,
AM

from lizzie's lungs

As Lizzie’s mom, I have had the privilege of writing on her blog twice before today.  The first time was after her surgery, and what a great day it was. We had so much hope.

9d63822e-7960-42fb-9e5c-b5ba58686a45July 1st 2016 Three days after Elizabeth’s surgery, one day after Jack’s first birthday. Both milestones she was so grateful to achieve.

The second time was is Boston when Elizabeth was beginning a new trial drug. We still had hope. 

Today as I write this, I am reminded how Elizabeth could find hope in the smallest things, in the most difficult times. For those of you not aware, Elizabeth passed away peacefully on Feb 25, 2017.
d2f37b35-243b-49b2-9ab1-937081a5024fWhen you love someone as much as we loved Elizabeth, you believe you can protect them. To say we were blindsided by this terrible disease is an understatement. Elizabeth had an incredible will to live, and so much to live…

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Konichi wa Nihon

So today is the big day, day one of the IASLCs World Lung Cancer conference! After a few days getting our feet grounded after so so much travel, I’m ready to report! 

So far it’s a busy day (what an understatement). I type this as I wait for my second big session. I’ll be back later with a summary of my day, and a few highlights of the conference’s first day. Until then, you can keep posted by following on Twitter (@thesearemyscars, @iaslc, #WCLC2017, or #LCSM, or Facebook). 

Sorry I can’t live link, but I will later on. Blogging by phone has its limitations! 

Sayonara for now, 

AM

So long Hong Kong

I write this as I am waiting to taxi out on my connecting flight to Tokyo. I am on my way to the International Association for the Study of Lung Cancer’s global conference, an annual gathering being held in Yokohama this year. In my pervious posts, you will have read about my excitement, so I’ll refrain from repeating myself.

What I will say is, thank you! 

Thank you to all the people who contribute and organize World Lung. Thank you to the researchers, those in clinics and those behind a microscope in the lab. Thank you to the oncologists and their teams, to the nurses and social workers, and the army of people who chose to work in the field of lung cancer. Without you, I wouldn’t be writing this, or writing anything. 

I am so greatful to the IASLC for being an excellent resource and for opening their conferences to patients, but for also having an award that helps patient advocates with limited means attend. If it weren’t for this generous award, I would not be able to attend. I would be at home, glued to twitter waiting for the latest developments in lung cancer research and care. Of course I have a vested interest in what’s going on at a “World Lung” because it tends to be where patients like me, living life line to life line get our info. That is, if we aren’t already in a clinical trial. It may sound weird that I’m excited about exons, translocations, and serum diagnostics, but that’s where all the juicy details are being studied, that is a gross understatement! There is so much incredible research being done in lung cancer. 

So as the stewardess asks me to turn my phone to airplane mode, I ask you to keep tuned here. I am hoping to post a daily summary of the things I have gotten to do (I can’t get to everything, that would require cloning.). I hope to be well rounded and share not only the patient experience, but the science and social events as well. 

Stay tuned,

AM

Look out Yokohama

Screen Shot 2017-08-22 at 4.14.12 PMIt 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

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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.

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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.

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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

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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.

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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

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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

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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.

AM

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