She looks and feels great – but has advanced lung cancer

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Ivy Elkins with her husband Ben and their sons Adam, 16, and Jared, 14.

Last weekend, I cheered my son in two soccer games (one in the pouring rain), went grocery shopping, worked on plans for the junior high school graduation party, and met friends for a girls’ night out.

Does this sound busy, but pretty normal?

Yes, but I am also a stage 4 lung cancer patient who has been living with my disease for about 3-1/2 years. But I do not look or act like I have terminal cancer. I am part of a new, but growing, class of people who live with cancer as a chronic illness.

As a lifelong non-smoker and healthy eater, I was shocked when I was diagnosed with advanced lung cancer at age 47. For six months, I had tried to get a diagnosis for my neck pain and supposed “tennis elbow.” Finally, I found out that they were caused by the spread of cancer from my lungs.

I had no cough, no difficulty breathing. Say what?

Because doctors now can test tumor tissue down to the molecular level (you’ve likely heard about this kind of precision medicine), I have been lucky enough to be treated so far with an oral “targeted therapy” pill that I take every night before bed. I feel fine. I’ve had no traditional chemo, no radiation, no surgery.

Recently, the pill I had taken since diagnosis stopped working so well because my cancer changed a little (mutated) and figured out how to get around the medicine. I had more molecular tumor testing and I am now on a new pill. I still feel fine.

All sounds great, right?

Just a couple of issues. Since I look fine, most people around me, other than my close friends and family, assume that I am “cured.” I find myself constantly correcting this perception, which gets exhausting.

I feel that it’s important for people to understand that not everyone living with cancer looks ill. No, I haven’t lost weight or my hair, but I am still in active treatment. I’m part of the “new face of lung cancer” where the outsides don’t match the insides.

I continue to visit my oncologist every 3 months when all is going well for scans and blood work. Every time, I worry that this will be the visit when I learn my current therapy has stopped working. This “scanxiety” is what I share with others who are coping with invasive cancers.

With early stage cancers, if you are doing well several years out from diagnosis, you are more likely to continue to do well. There are big celebrations at two years, five years, etc.

As a late-stage lung cancer survivor, I will always need some form of treatment (barring a major miracle, which would be awesome). I just have to hope that research continues to move fast enough so that a new drug will be ready and waiting for me if my cancer changes again.

Does that sound a little stressful?

You bet.

How do I handle it?

According to my husband, I have developed a somewhat dark sense of humor. I make lots of jokes about his “future wife” —
she will be perfect, unlike me.

It helps me to make jokes about my situation. I’ve made a close, fun group of fellow “cancer girlfriends” and we share our jokes, commiserate, and also do normal things together, completely unrelated to our lung cancer.

I love to travel. Since my diagnosis, we have gone on family trips to Mt. Rushmore, Niagara Falls, Toronto, Puerto Rico, Philadelphia and San Francisco. We’re planning a trip to Iceland this summer, my husband’s dream vacation.

I try to live in the moment as much as possible and it’s definitely easier to do this while exploring a beautiful new location.

Although I’m not always successful, I strive not to sweat the small stuff and appreciate every day I live on this earth. One of the good things living with lung cancer has taught me is to value the quality of my life and not obsess too much over the future. After all, no one know what tomorrow will bring.

Ivy Elkins lives in Buffalo Grove, Ill., a northwestern suburb of Chicago.  She has been married for 21 years and has two teenage boys who keep her very busy.  She also loves movies, reading, and drinking wine with her friends. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for one million patients and caregivers.