Awareness – These Are My Scars

Ontario’s Public Healthcare??

February 25, 2019February 25, 2019 These are My ScarsLeave a comment

It’s been ages since I have posted, but fear not I am of good health (except for the flu…I’m better now!). Good health means I have been extremely busy in my personal life. I am writing today because I am seriously worried about what might happen to health care in the province I live in, Ontario.

Leaked documents have revealed the Ford government’s plan to open the door to the privatization of Ontario’s healthcare system. An expert with the Ontario Health Coalition says that the government’s plans “will undoubtedly compromise quality, safety and lead to two-tier health care.”

Send an urgent message to the PC government and local MPPs to demand that they protect public health care and scrap privatization plans.

https://docs.google.com/…/1FAIpQLScipV_9ddSf7IBaef…/viewform

If you’re part of the young adult cancer community, or you want to support us, please take a moment to sign this petition in defence of public healthcare.

[1] Toronto City News – Leaked Documents

If signing this petition isn’t your cup of tea, please make your voice heard by contacting your local MPP.

Be well,

Mesothelioma Doesn’t Have To Be a Death Sentence

August 7, 2018 These are My Scars1 Comment

I am long overdue for an update, but that will have to wait (just a little longer). I am posting today because I think this message needs to be heard. I tend to focus on my niche in lung cancer, but the truth is, its a big wide open field. For a very long time (think since the 80’s) the survival rate has remained pretty stagnant with few exceptions. So when one hears the word Mesothelioma, you can understand the fear it strikes on one’s heart. It was March 1998 when my family got the news my father was diagnosed with pleural mesothelioma and given months to live. To his credit, he survived 16 months. Since that time, and for a long time, treatments didn’t change and neither did the prognosis. Until now. Screen Shot 2018-08-06 at 8.53.39 PM

On August 1st, it was Lung Cancer Awareness Day, I was supposed to post this then, but I held on to it deliberatly to make a point. Every day is Lung Cancer Awareness Day for me and my family, and for all those who have been touched by this terrible disease. So I post this today, because August 6th is Lung Cancer Awareness Day as is the 7th and 8th and so on.

The second reason I post this is because many people out there who have been diagnosed or have a family member who has been diagnosed may not realise that asbestos exposure at the work place is a work place hazard, and that often, there are class action Screen Shot 2018-08-06 at 8.56.14 PM suits or government programs (although they don’t advertise!) to help support both the patients and their families. In Canada where I live, asbestos and its products are not
manufactured or in use, however, oftentimes exposure can come from old materials such as drywall, pipe fittings, or coatings. So if you are planning on a renovation, or work in construction, it is wise to be aware of potential exposure. Asbestos is stable until it is disturbed, so it is advised that you contact an inspector or a remidiation company prior to any demolition or work. I will post some links to information and contacts at the end of the post. Now that I have gotten that off my chest, I welcome you to read the following article: Mesothelioma doesn’t have to be a death sentance, by guest author Gregory A. Cade of the Environmental Litigation Group, P.C.

I have worked as an attorney who specializes in mesothelioma, asbestos and environmental law for over twenty years, and in this time my firm, Environmental Litigation Group, has helped more than two hundred thousand clients. I have spoken to many people and I have learned about their lives, experiences, fears, I became close to my clients and I have learned what most people think when they hear that they have mesothelioma.

First of all, it is important to define what mesothelioma actually is, as some readers might not have heard about it until now. Mesothelioma is a rare, very aggressive type of cancer that develops after asbestos fibers enter into a person’s body. This disease is extremely volatile, in the sense that it can metastasize extremely fast and it can take either a few months to a few decades for the cancer to develop, after being exposed to asbestos. There are 3 main organs where mesothelioma can develop: the lungs (pleural), the abdomen, liver, spleen and intestines (peritoneal) and the heart (pericardial). There are rare cases in which mesothelioma develops in other parts of the body, such as the testicles.

Throughout my career as an attorney, I have met many people diagnosed with pleural mesothelioma, the most common and aggressive form of this type of cancer. It is always heartbreaking to speak to them because you always feel and see the fear and hopelessness in their eyes. Many people would see a cancer diagnosis as equal to a death sentence. On top of that, because of its aggressiveness, since they are diagnosed mesothelioma, patients are usually expected to live between 6 and 18 months. This is why, most clients come broken and defeated, having already given up on the fight with the disease.

I believe that this is an incredibly wrong and dangerous mentality! To every person sick with this illness that comes through my door, I tell them to keep fighting, to never surrender. I personally know people who have lived over 10 years with mesothelioma. They do sports, go outside, eat at restaurants and they look great! Nobody would even think that they have cancer. As cliché as it may sound, I believe that cancer can be beaten and that nobody should ever give up hope.

In the last years, more and more treatments are becoming available to help cure cancer patients, or at least extend their lives. Chemotherapy and radiation therapy, although they yield results, are not the only options anymore. There are precise surgeries which remove damaged tissue, medical trials that can help people, there are blood transfusions to strengthen the immune system, there are pills which help fight the disease and keep it from spreading. All of these methods are worth trying as they can be the difference between life and death.

Of course, because mesothelioma, and cancer in general, are such aggressive diseases, patients adopt a fatalistic approach towards life. I want to urge people who may find themselves in this unfortunate situation to keep pushing forward! There are so many wonderful things to explore and if you are given a chance to do them, why not take it? Indeed, there are odds that the cancer will still progress, but even so, remain hopeful! Some clients who combined exercising with healthy eating and regular treatment have survived for more than 5 years, some even more that 10! They have watched their children grow, have remained with their loved ones, have explored the country and they have grown as a person. So I must emphasize once more, keep on fighting, hoping and taking care of yourself because cancer doesn’t have to be a death sentence.

Asbestos Information: Screen Shot 2018-08-06 at 8.55.41 PM

In Canada:

USA:

International:

Spanish

http://4safenv.state.nv.us/sites/default/files/assets/docs/asbestos-factsheet-spanish.pdf

A very special thanks to Gregory A. Cade of the Environmental Litigation Group, P.C. 2160 Highland Avenue Birmingham, Alabama 35205 (760) 696-7959

Be well,

Let’s Talk Again Bell

January 31, 2018January 31, 2018 These are My ScarsLeave a comment

Screen Shot 2018-01-31 at 2.19.03 AM When I started this Blog, it was really intended to be an outlet to express my life and with it was like living with a terminal illness, lumps and all. It is still that, but it has turned into so much more. Little did I know that a year ago on Bell Let’s Talk Day, a post I wrote the previous year talking about what it was like coming off of antidepressants would resonate so deeply. Deeply enough that it was picked up by WordPress’ Discovery team (a very awesome experience). I don’t know if this year’s post will be as profound or powerful, but I hope it touches someone out there and let’s them know they aren’t alone, and it’s ok to ask for help.

Screen Shot 2018-01-31 at 2.21.13 AM This year has been hands down the hardest year for me mental health wise. I have felt things that don’t seem like me. I have always been cheerful and tenacious, but since changing cancer medications, I have felt anything but. I wish I could just switch meds, but they ARE the thing that keeps me NED and cancer free(ish), so I can’t just stop, or change, I have to deal.

But it has been scary!

This year I have gone to some very dark places, had thoughts I never thought I’d have. I have to remind myself, that I am not these thoughts, and that tomorrow is a new day. Initially, these thoughts would casually pass through my consciousness very briefly, to float away. Then they would happen as I looked at my life saving medication and wondered why I take them? I mean what’s the point? I’m so tired of all this. Gulp. Screen Shot 2018-01-31 at 2.21.39 AM Swallow, down the meds go. The thoughts soon float away. I then found myself on occasions, especially when I was feeling particularly down or feeling sorry for myself questioning whether or not everyone would be better off without me? On very rare occasions I actually uttered these horrible thoughts, “I wish I were dead.” There it is. Dark. I am not my thoughts!

It took me a few times experiencing this downward spiral to realize that something was really wrong. I was in a crisis that I hid from everyone, even myself. Upon this revelation, I immediately called my psychiatrist. Even with counseling and antidepressants, the depression and darkness seeped through. It wasn’t until I read another blog responding to Chris Cornell’s suicide that I really even realized this wasn’t me and that my brain as the author put it, was sick. It took an increased dose of my antidepressants and more Screen Shot 2018-01-31 at 2.26.02 AM frequent counseling visits to vastly diminish the dark. I still feel down, but now I try to remember that tomorrow is a fresh start, I allow myself to feel whatever it is I need to feel, and then try to move on. I never give it a postal code. I won’t live there. I have too much to live for. Too much work to do. I love life too much, and I certainly didn’t go through all this to just throw-in the towel or bury my head in the sand.

For those who live in Canada, we have a wonderful initiative, sponsored by Bell Canada. It happens every year around this time and it raises both funds and awareness for mental health in Canada. Mental illness effects 1 in 3 Canadians, and yet it is still largely stigmatized. Bell Let’s Talk Day removes the stigma by allowing everyday Canadians to reach out and stand up, and is working to breakdown barriers faced by those who suffer from a mental illness. Screen Shot 2018-01-31 at 2.29.59 AM You can help raise awareness and funds by simply sharing #BellLet’sTalk. By doing so, Bell will donate 5 cents every time it is Tweeted, texted, mentioned online, or when you use the bell network, so call, Tweet, text your hearts out for mental health.

Be Well XO

If you or anyone you know is in crisis, please call 911 or

Distress Lines

Operated by various agencies. When in need of someone to talk to. Open 24 hours a day (unless otherwise indicated).

Toronto Distress Centres (416) 408-4357 or 408-HELP

Gerstein Centre 416-929-5200

Telecare (Mandarin & Cantonese), 416-920-0497

Contact Centre Telecare Peel 905-459-7777, Languages: English, Punjabi, Hindi, Urdu, Spanish, Portuguese

Assaulted Women’s Helpline 416-863-0511, Toll-free: 1-866-863-0511

Screen Shot 2018-01-31 at 2.19.34 AM

Warm Line, Progress Place 416-960-9276 or 416-960-WARM, every day from 8pm to 12 midnight

Kids Help Phone at 1 800 668-6868

Distress Centre Peel 905-278-7208

Durham Crisis Line 905-666-0483

Oakville Distress Centre – 905-849-4541

Click here for a comprehensive list of International resources

#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.

Screen Shot 2017-11-28 at 9.07.57 PM

Organizations I love.

Lung Cancer Canada

Young Adult Cancer Canada

First Descents

Save Me Dog Rescue

T’was the Evening of Hope

November 23, 2017November 23, 2017 These are My Scars1 Comment

November is Lung Cancer Awareness month and tonight is Lung Cancer Canada’s annual Screen Shot 2017-11-23 at 4.18.11 PM.png Casey 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 PM I 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 PM leave 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

Konichi wa Nihon

October 15, 2017October 15, 2017 These are My ScarsLeave a comment

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,

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.

Screen Shot 2017-05-04 at 9.04.12 PM

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

A Plea for Help

March 31, 2017March 31, 2017 These are My ScarsLeave a comment

Hello dear readers.

I have a favour to ask you.

I was contacted today by a young mother seeking help for her 4 year old son who has ALK MYCN driven neuroblastoma. They have been fighting for almost all of his short life and time is running out. What they need is access to Lorlatinib, whether through trial or off label. Rivky