#ThisistheFaceofLungCancer – These Are My Scars

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.

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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-pm She 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.