#Community – These Are My Scars

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

Intentional Magic (Fog Cancer)

June 12, 2017 These are My ScarsLeave a comment

Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.

When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.

Now put these people all together and its magic.

As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.

Its magic!

It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.

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