Today is a pretty remarkable day in my life. The day my life was changed, utterly and completely – nine years ago. When I think about that, I am brought to tears. After all I wasn’t supposed to be here. If it weren’t for luck and scientific breakthrough, I wouldn’t be. There are times I wonder why I am, still here that is. If it were any other kind of anniversary, I would be celebrating with a party or a cake. Because it’s my cancerversary, my day is spent reflecting on my blessings and thinking of all the dear friends I have lost along the way.
In years past, I have been so busy that the day has almost gone by without notice, can you imagine? A day not thinking about cancer, a normal day. I don’t have many of those. 3,285 not normal days, just off, abnormal like the cancer. Some days I feel every second. On other days, time flies.
I live a condensed life, condensed experience, condensed joy.
This year is kind of a monumental year. I turn 40 in just more than a month. 40! Middle aged (when did that happen :o)! Believe me, I didn’t think I’d ever see my 35th, let alone my 40th. When I was diagnosed nine years ago, I didn’t think I’d get to do a lot of things!
I didn’t think I’d ever be able to buy a car or a house. I didn’t think I’d get to travel. I didn’t think I’d get the chance to fall in love. I didn’t think I’d ever advocate for change. What did I know!? I had no idea what potential my life had. I had no idea of what I could achieve. I had no idea what life truly held. I had no idea what it meant to live. I mean really live.
It shouldn’t take critical or terminal illness to teach us that lesson. Why can’t we all live genuinely, authentically, passionately, no time for B.S. kind of lives.
When you realize that time is really the precious commodity that everyone is after, you begin to value it over everything else. Things are just thing and are transient. Money can be made, of course it can buy comfort, but it’s just a thing. Time on the other hand provides us with opportunity. Opportunity to spend it on doing what we love. Opportunity to spend it wisely. I say that, because for us, it’s limited.
Our clocks start ticking they day we are born. So we can chase money and fancy things, and spend all that time working and running in circles. Or. We can open our eyes and see how beautiful the sunrise is, especially when you are with someone you love. How magnificent it is to experience the cultures of the world. How wonderful it is to be loved.
I wouldn’t be here without Love. The love (and kindness) of my medical team. Love from my family and friends. The love of my dogs. The love of my life. Thank you all! I couldn’t do it alone. I know together, we move forward.
Its Valentine’s Day (and Ash Wednesday – irony?!), I had planned to write about some of
the struggles of dating and cancer, but I am sick with the flu and my fever addled brain isn’t functioning as diligently as I’d like. So to avoid me writing nonsense, I will repost what I wrote last year and save that topic for my next post. If there are any specific questions you might have regarding dating and cancer, please send them to me and I will do my best to address them in the post. Until then, whether you are spending the day with your valentine or going solo, know that you are loved.
Be well xo
On this St. Valentine’s Day, I thought I’d share with you the story of how my husband and I met.
Now before I get to the meat and potatoes of the story, I must give you a little backgrounder. Before I got diagnosed with cancer, I didn’t date. Especially online dating. Like many, I had my reasons, but mainly, it was because I was so fracking busy I had no time to socialize with my friends, never mind strangers. So at that time, I figured, if something came around, it came around. My focus was my career. Of course, when I got sick, the main focus was on that, and getting better. So again, dating, not high on the priority list.
When I got sick again, I thought I was a goner. I figured it was time to get out there. I mean if I was going to die, I may as well have a little fun before kicking it. I decided to put my profile up on a few dating sites. I relegated myself to knowing I’d likely meet a few wackadoodles, because such is life. If that happened, I’d just politely thank and excuse myself and quickly extricate myself from the situation, pick up the tab and be gone, thank you very much. After all I have terminal lung cancer, I don’t have time to waste!
So here comes the good stuff.
I winked at Patrick and he winked back at me, at least that was how it was done on that particular site. I know cheesy!
Shortly after the wink, he sent me a message kindly asking if I would like his number. I of course said yes. I anticipated a call from him, but a week went by, then two, so I figured he had lost interest and didn’t think on it too much. Ok fail numero uno. No problem.
Then out of the blue, about a month later, I get a phone call and its Patrick. I almost didn’t answer because I was waiting to go into an appointment when he called, but he was so apologetic, I couldn’t resist. He said he had been thinking about calling all month, but he had been so swamped at work that he could never find the right time. He called because he had a few days off for Thanksgiving and his birthday and wanted to meet me. I offered to take him for coffee for his birthday. It was arranged that we’d meet at the Dark Horse Espresso Bar at 4 on his birthday.
As left my house to meet him, I remember thinking “wouldn’t it be funny if we ended up on the same streetcar?!” It would since I was coming from the west end of the city and he was coming from the east. So when I approached the streetcars at Spadina Station, I texted him to let him know I was on my way. He replied, so am I. There was such a crowd waiting to get on streetcars that day, I decided to wait for the crowd to die down and I got on the next one. I got on and went to stand where I usually stand at the back of the car in front of the back doors.
Even though I had waited, it was still jam-packed. After the streetcar passed College, a bunch of people got off and there was some space. So I texted him again saying, “I just passed College, I’ll see you at Dark Horse.” He replied with “me too.” When I looked up from my phone I spotted a guy that met the description Patrick had given me. I chuckled to myself because he was literally 5 feet in front of me.
Upon my realization, I texted “Are you wearing a grey hat?”
“I think you are on my streetcar.”
At which time he had moved directly in front of me, but had his back turned. I watched as he looked about the streetcar trying to find me. Just before our stop, I tapped him on the shoulder. He turned, looked at me and said “You’re short.” (Oh God…here we go) “I’m sorry, I just mean usually girls I’ve met are taller than me. You’re awesome!” (Ok, you get one…and you recovered well).
At Dark Horse the conversation came fast and easy. He made me laugh, I felt like we knew each other already. We talked so much, we shut down the shop. At this point, I didn’t want the date to end, so I said “hey, are you hungry, I am, we should grab a bite.”
“Yeah! Absolutely.” So we walked a short distance on Queen St. and stopped in at little bistro. Again, the conversation came easy and we ate and talked and ate and talked until it was time for them to close.
We had met at 4 that afternoon and now it was 11:30, but time flew by so fast! He walked me to the subway, but before we said our good byes he says, “My room mate is throwing me a birthday party. Do you want to come?” As much I really didn’t want to say good night, but I was going to Ottawa the next day for a conference and really did need to get home. The funny thing was, he should have been at that party way earlier on that evening. I guess he didn’t want the date to end either. We parted ways and I was of to Ottawa.
The next day sent me a text me to say what a good time he had and we chatted away the whole weekend and agreed to see each other again. When I got off the train three days later, he met me with snacks, because he knew I had been on a train for 5 hours and I might be hungry (Swoon). He then said he had dinner awaiting me.
As I wandered his apartment, I noticed the pictures he had of family, it was really nice. I knew that I liked him, I also knew I had a huge monkey on my back! I had been tormented all weekend and all though our date. I felt so deceptive by keeping my cancerous life from him. Did I wait to tell him, or do I break the news now so he’s not invested. From all I have seen, I need to do it sooner than later. He is too nice to get hurt.
After dinner, as we sat on the couch, I knew it was my opportunity (well it was nice meeting you), I took a deep breath and said, “I have something to tell you.”
“Oh, is everything alright?”
“Yes. But. Ok, how do I….It’s nothing that has to do with you, it actually me. I’m…I’m not an alien, but I am a mutant.”
“I’m sorry, what?”
“I’m a mutant, I have ALK rearranged stage 4 lung cancer. So I’d understand if you don’t want to see me again.” He took my hand and looked at me and said “My friend’s wife has cancer too, I think you guys would make great friends. I really like you, I’m not going anywhere.”
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.
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. 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 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. 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
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
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.
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.
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
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.
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
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
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.
Today is Pride (at least was a few hours ago) and on a day where everyone is celebrating coming out of the closet, I have gone into mine for a long over due clean out. Both literally and metaphorically.
As I painfully try-on every stitch of clothing I have, I am coming to the realization that there is way too much I’m not wearing, way to much that doesn’t quite fit, and way too much that’s way too small and as I look at the piles that have formed on my bed I realize that I’ve been holding on to these things that don’t serve me and actually burden my life too hard. It dawns on me that when you hold on to something too tightly, there’s no space for anything else. This can be clothes or thoughts or identities.
This past year has probably been the hardest I’ve ever had. Harder than when I was diagnosed, harder than recurrence, harder than when my father was sick and dying, and even harder than all the years living through his alcoholism.
This year I have really struggled with my mental health. The following will likely come as a shock to many in my life who care very deeply for me and I want to assure you that I am in counseling and I am on medication, and would never ever actually hurt myself. I am also very sorry you are reading this rather than hearing it from me personally. Some things are impossible to say face to face and can seem easier to write it down, trust me its not. Up until this point I have hidden this admission from almost everyone, including myself.
My internal dialogue this year has been different than in the past. Lately I have asked myself many times “what am doing this for?” (as I take my trial meds) or tell myself “I just want to crawl under a rock and die” or “I wish I was dead”. Scary thoughts. Logically I do not want to die, I want to live. In fact I want to live in vivid colours, openly and honestly. Admitting to myself that these dark thoughts are happening is a start. It is the number one thing I will address with my psychiatrist, because I want to live.
So whatever the skeletons are, go into the closet and bring them out. Shine the brightest light on those demons and then let them go. Let them go so you can embrace life.
To all my friends celebrating Pride, have a great day and always be proud of who you are and what made you.
To all my friends celebrating Eid, may you have a blessed day.
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.
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.
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 you 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.
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.
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.
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.
I read yesterday that Carrie Fisher was laid to rest and that her ashes had been contained in a Prozac urn. It both mad me sad (that we lost an icon, childhood hero, and mental illness advocate), but made me laugh at her ultimate nose thumbing. It is a true testament to her wit and humour. Carrie’s Leia was the first princess I ever wanted to be. I mean why not? She was plucky, beautiful, spunky and carried a blaster, what little girl wouldn’t want to be her?! Sadly I was ill equipped and lacked the follicular capacity to create those famous cinnamon buns, Cinderella it was. All humour aside, her passing reminded me that all of us struggle, sometimes it is invisible and private and sometimes it is right there in your face. Regardless of which it is, we all have the capacity and grace to pull ourselves up and make a comeback.
I don’t only live with one invisible stigmatized disease (lung cancer), but two. I also live with depression and anxiety. You may think that it came about after being diagnosed with cancer, but my first diagnosis occurred in my mid-20s. Since then, a lot has happened and understandably, depression has played a fairly significant roll in my life post diagnosis. I had an inkling that it may come around again post Dx and tried to head it off at the pass, but your body and mind have a way of telling you it needs help.
In my 20’s depression was a sleeper. It snuck up on me and slowly took over my life over the course of a year. In my cancer years, even being fully aware that it could happen again, it hit me like a truck with anger and bitterness, two emotions I didn’t need in my life or recognize as depression. Rather than allowing my life to be dictated by these volatile emotions, I sought out help. Lots of it! I went to Young Adult support groups, saw a psychologist, was part of an online lung cancer group, and finally took medication. I needed it all, and it helped.
Two years ago I tried weaning off my meds, I wrote about and shared the experience with The Cancer Knowledge Network. The entire experience was both eye-opening and rather terrifying. I share it again here because I want people to know that there is no shame in having a mental illness, and there is no shame in asking for help when you need it. It is not a weakness but rather a great strength and sense of self-awareness.
I have cracks and they are starting to show. Actually I’m crumbling. I tried an experiment, it failed. Or maybe it was a raging success, because I’ve come to the grim realization that for the rest of my life I will depend on anti-depressants to regulate my mood. I suppose that you should be careful what you wish for, because you just might get it…
I wanted to see how I would fare weaning myself off of my meds just to see what it would be like to feel normal. Maybe I’d be happy and satisfied and in control of my emotions, because for 4 years I’ve felt numb. It felt like I wasn’t experiencing my life as fully as I should. I missed the raw edges because I wasn’t sure if what I was feeling was as intense as it should be. I was happy and sad but never really happy or really sad, which is why I suppose I began taking meds in the first place. The highs and lows were just so extreme that I was a walking minefield.
Afterwards though I was even keel, but dulled somehow, at least I felt like I was dulled. So I thought was could it hurt?
It’s been almost a month and I’m feeling. Feeling angry and bitter, sad and depressed. I actually hate myself right now. I don’t like wallowing in self-pity, but that’s exactly what I’ve been doing. I want to curl up into a ball and sleep. I want the world to go away and just leave me alone. I hate feeling this way! I hate that I can’t be happy for others without feeling sorry for myself. I hate thinking that my life has been a series of tragedies that I just happen to scrape through. I hate thinking that I should be happy because I’m alive. I hate not getting what I want, what I’ve worked hard for. I hate self-pity!
So on Monday I will fill my prescription again and hope that the edges will become dulled so I can be the person I was a month ago before this brainchild of mine, before I became myself. I will become comfortably numb like the song says and I will feel…less. I won’t hate myself so much, and I’ll go on. I just wish I didn’t need pills to keep me from being me, a me who apparently is bitter and angry even if I am grateful to be alive, because sometimes even that isn’t enough.
It is my hope that some one reading this will reach out if they are struggling, because sometimes it is just too much to hold, and you need someone to help you let go.
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.
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.
Images like this always blow me away!
Clinical trials save lives!
Faces of lung cancer
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!