NSCLC – These Are My Scars

Receiving a cancer diagnosis is devastating and life altering, but as a young adult with lung cancer the challenge was even more daunting. Like most people I was oblivious that I could get lung cancer, after all as a young woman I thought I was more likely to get breast cancer because I had breasts. I never fathomed that because I had lungs I could get lung cancer 2013-08-14-20-48-46 . I know differently now.

Even after beating the odds of living 5 years beyond diagnosis, the first question I’m asked when people find out I am living with lung cancer is “did you smoke?” The idea that smoking causes lung cancer is so entrenched in our psyche that most people have no idea that up to 60%¹ of lung cancer patients have either never smoked a day in their lives, or quit decades prior to their diagnosis resulting in an unfair stigma being placed on patients and their families.* The notion that someone deserves their disease is a ridiculous concept to me, but a 2010 national poll showed more than one in five Canadians said they feel less sympathy for people with lung cancer than those with other cancers because of its link to smoking².

I started down this road in 2009 when a small bump on my collarbone sent me to my doctor. Despite being unconcerned he sent me for an x-ray. That simple action would lead to the cascade of tests that would ultimately lead to the diagnosis of locally advanced adenocarcinoma of the lung. I am lucky! Things could have gone differently, I could have been inoperable, I could have been sent home, I could have been ignored, I have many friends who were, they didn’t get diagnosed until they were very sick, and sometimes even too late.

Once I peiced the tatters of my life back together, recurrence hit. I was devastated once again. My worst fears had come to pass. Beating Lung Cancer once was hard, I knew beating it twice would be damn near impossible, after all, at 17%, the five-year survival rate for lung cancer remains one of the lowest of all the major cancers³.

Finding out that I was a mutant was a relief…I know what you are thinking?? What! I’m sure most people would opt for a super power, but knowing I had an ALK-EML4 fusion meant I had options, so for me it was just as good. Prior to this revelation, I had few to no options left as a 32 year old stage 4 recurrent lung cancer patient. I was literally waiting to get sick so I could get treated and hope it wasn’t too late knowing full well I’d likely become one of the 85% of lung cancer patients. Dead.

I found information about a targeted therapy in clinical trial in a blog, much like this one. At the time I didn’t know anything about trials, targeted therapies, or driver mutations but I immediately jumped on this and looked for any way I could get in to the trial. Luckily there was a trial close to my home. In Sept. 2011 I was admitted and randomized to the drug group and began taking an ALK inhibitor. From that time until July of this year I had been NED (No Evidence of Disease, the best letters of the alphabet) and being unrmarkable was fantastic, but things change. I have always known that change would come, cancer is cunning and insidious.

Fear not dear reader, I am in a new trial for a third generarion targeted therapy. Targeted therapies mean I can live a fairly normal life. I don’t have to worry about neutropenia and infection, or other damaging side effects. I am able to live and travel. I am able to advocate and volunteer. I am able to plan a wedding, buy a house and plan on a long life ahead. It isn’t a cure, I will likely never be cured, but I gladly put my faith in research, after all it has given me five years and counting.

What’s disturbing is that every year, 26,100 Canadians will be diagnosed with lung cancer, 20,800 of those diagnosed will die⁴. It takes the lives of more Canadians than breast (5,000 lives), prostate (4,000 lives) and colorectal cancers (9,300 lives) combined⁵. Yet it is one of the most underfunded.

It is exciting times in lung cancer research and diagnosis. Less invasive procedures, genetic testing, screening procedures, and many new targeted therapies are being developed and improved upon and patients are benefitting in so many ways. From prolonged life and higher quality of life to the freedom of taking their treatment at home and living life unremarkable or not to the fullest. You may think, great! They don’t need funding or support, but in actuality, the disease receives only 7 per cent of cancer-specific government research funding and less than one per cent of private cancer donations⁶. I can only imagine what they could do with 3%.

Living with a chronic disease, isn’t about how many days we have to live, it’s the ability to live life in the days we have. When it is my time to leave this earth, I will do so having no regrets. I will know that I did not let my diagnosis define me but allowed me to be the person I was meant to be.

*Current smokers had smoked 100 or more cigarettes and currently smoked. Current non-daily smokers were current smokers who smoked only on some days. Former smokers had smoked 100 or more cigarettes and no longer smoked at all⁷.

Lung Cancer Canada, Lung Cancer Accessed at: http://www.lungcancercanada.ca/Lung-Cancer.aspx
Ipsos MORI, Perceptions of Lung Cancer in Canada, An Ipsos MORI report for the Global Lung Cancer Coalition, April 2010. Accessed at: http://www.lungcancercanada.ca/ resources/site1/general/PDF/CanadaReport.pdf
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 64
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
Canadian Cancer Society, Canadian Cancer Statistics 2016, p. 50
Canadian Cancer Research Alliance 2007, CRA 2009, Canadian Cancer Society 2010.
Husten, C. G. (2009) How should we define light or intermittent smoking? Does it matter? Nicotine Tobacco Research 11(2), 111-121.

I should start by saying that on my actual Cancerversary (April 15^th) I was so preoccupied with a doggie crisis that I spend all day at the emergency veterinarian’s worrying about my dog that I forgot all about what day it was! Needless to say, in the days that followed I did a bit of reflection on what surviving three years means to me.

I remember shortly after I was diagnosed, a friend of mine told me about her mother who was also battling cancer at the time. She mentioned that her mother had been fighting for three years. I thought, wow, what a long time!! In hindsight, it seems like no time at all!! It’s strange, I barely recognize myself or my life anymore, but I love who I am and I certainly love my life…cancer and all! I had always thought I knew what I wanted, but it took cancer to show me what was really important, and it wasn’t what I thought it was. Cancer has been both a blessing and a curse, and along the way, I’ve learned a few things that I’d like to share.

I’ve never felt so loved or so alone in my life

It is a strange paradox having an amazing family and friends who love and support you and yet still feel alone and isolated from everyone. This was the situation I found myself in after my diagnosis and treatment. Initially, this really bothered me until I found Young Adult Cancer Canada. Even though I had never met an actual young adult survivor, just knowing they existed gave me hope and let me know I was not alone.

Richness is redefined

I used to think that if I worked hard and got a good job that life would be good. I’d have money, be able to travel, maybe buy a house, and finally retire with a nice fat bank account. I’ve learned that even with a good job, a nice house, and a fat wallet, life can throw you a curve ball. If you don’t have your health, nothing else really matters. I remember being envious of those who lived “the good life” but what was that? Were they really happy? Sure they had pretty things and drove nice cars, but were they really rich? I’ve discovered that money isn’t all it’s cracked up to be, that richness is a state of mind. I’ve discovered I am rich. I have a loving supportive family, I am healthy (more or less), I have a roof over my head and food in my belly. All these things make me luckier than a majority of the global population! I have also had this life altering experience that for good or bad has made me a new person, one who values connections over dollars, and experiences over possessions.

I’ve never wanted to live so hard in my life

Being told you have cancer once is frightening, but being told it has come back can be both devastating and liberating at the same time…again another paradox…let me explain! After I finished treatment the first time, I figured that the new and improved me could pick up the pieces and dive right back into my old life and for a while I did. In May of 2011, I was told the cancer had come back after about a year of stability, this news was a blow! To top it off, I was told that my options were limited, I wasn’t a candidate for radiation or surgery and chemo wasn’t really an option until I became sicker, and even then despite our best efforts the cancer would come back. Essentially I was screwed…so I said to hell with expectations; I’m going to do whatever I want and what ever makes me happy. Since then, I have done exactly that. Living hard isn’t what you might think!! It’s not about partying or running amok, for me it’s about experiencing all the beautiful moments life has to offer if we just took the time to stop and enjoy them. It’s about sharing myself, my story, connecting to people and nurturing those relationships, so that when it is time to cash in my chips, I won’t have regrets about what I didn’t do or remorse about how it treated someone. Living hard is about being present and engaged in life!!

Letting go of things

There are certain things I’m learning to let go of and mourn their losses, and it is a process. Some days are better than others, and some things are more painful than others! I’ll never be a home owner, that’s ok…the white picket fence and double car garage are over rated, I’d rather travel anyway!! I’ll also probably never have my own children, partially by choice, but mostly due to treatment. For the most part, I’ve accepted that getting pregnant or being fertile is not going to happen for me, usually I’m okay with this, but sometimes the desire to have a baby comes over me and my heart breaks at this loss. This usually happens when I’m surrounded by cute babies (Damn their cuteness)!! Pregnancy and carrying a child to term would be incredibly difficult as I’d need to stop treatment to try, and even then there are no guarantees that the drugs wouldn’t affect the health of the baby, so I think its better not to take the chance.

Realism is perfectly fine

I’ve realized that I’m not an optimist or a pessimist but a hopeful realist, and this is perfectly fine for me. I accept my reality, I have cancer. I’ll likely die with cancer, but that doesn’t mean I don’t want to live with cancer for a very long time!! That sometimes shocks people, but it’s the truth, it’s okay to accept our mortality without giving up on life. I chose to live, and I chose to live with cancer, but I also realize that there will come a time when that is no longer a possibility, and I’m okay with that even if others aren’t.

People will give advice from the heart even if it is annoying

I’ve had many people try to give me advice or suggestions to “help” me, and I’ve realized that they do this with the best intentions even if they have no clue or are annoying, they do it with love. This is true with questions too; I can’t tell you how many times I’ve been asked if I smoked. Having lung cancer at 30 can be hard to get your head around, I guess some people assume you did something to bring it on because it’s all they know…After all smoking = lung cancer. This question used to make me homicidal, but I’ve realized that not many people know that almost 25% of new diagnoses of NSCLC are people who have never smoked, I happen to be one of them, so I choose to educate rather than berate…although I admit to the occasional sarcasm!

Ok I’ve babbled on long enough!!

Needless to say, life is good! So my life isn’t what I thought it would be, big deal! I’m much happier this way. After all, isn’t life is supposed to be about, learning, discovering, living, and loving?!

In case you are wondering, my dog is just fine and was back to his perky self in no time!

Thanks for reading!