From Gumdrop and Lollipop Land to Opryland; Living with LC

[CindyA]

From Gumdrop and Lollipop Land to Opryland; Living with Lung Cancer

September 16th, 2013 - by Jill Feldman

For me, Gumdrop and Lollipop Land is Camp, in Culver Indiana. Culver is where I went to overnight camp as a child, where I worked in the summers during college, where three of my kids go to camp now, and where I have worked (round 2) the past two summers, with my best friend from camp whom I met 30 years ago.

Culver is my happy place ~ Gumdrop and Lollipop Land. Being a camper was the greatest gift from my parents; it was an experience like no other. Camp was also my safe place, a reprieve from some hard times at home. My dad died in May, when I was 13, and I couldn’t wait to get back to Culver where I could escape reality and pretend my life was normal for a few months.

Now, 30 years later, I feel the same. When I’m at camp I get a “breather” from lung cancer. People know I have lung cancer, and we talk about it at times, but I don’t have scans, doctors, events, advocacy, etc. Lung cancer is such a small part of my everyday life at camp that I am able to, physically and emotionally, put it far, far away and just live, in Gumdrop and Lollipop Land.

Two weeks after coming home from camp this year, LUNGevity hosted the Red Carpet Live event at the National Women’s Survivor Convention in Nashville, Tennessee, and I was honored to be their special guest. To ‘re-enter’ reality from camp that quickly was tough, but I was looking forward to Nashville and my stay at Opryland!

The National Women’s Survivor Convention was the inaugural event hosted by National Women’s Survivor Alliance. Its purpose was to empower, educate and connect women with all cancers. It had great energy and was very organized, but I was a bit frustrated that lung cancer only represented 1% of the participants (9 out of 900), despite being the number one cancer killer among women. Reality check #1; back to reality!

The empowerment sessions at the convention were informative and well lead by experts, celebrities and patients. I chose to attend the sessions about Survivorship over Managing Treatment or Fear of Recurrence because I figured the later didn’t apply to my situation since I’m not currently in treatment and I’ve already experienced recurrence a few times. Reality check #2; neither did the former! Survivorship was about life after cancer, not life with chronic cancer.

I feel great and look healthy, but I was reminded shortly after I returned from Nashville that what I feel is less valid than the scan that shows active disease. Despite the scan, my appointment was positive: The radiation seems to be working on the nodule treated in May, there continues to be changes, but no significant growth in the other nodules, and most importantly, there weren’t any new nodules!

So why was that appointment so hard? Reality check #3; I still have lung cancer and always will. Every appointment is a harsh reminder of the actuality that lung cancer will be a lifelong roller coaster ride. Of course I have perspective, and I am grateful for so much in my life, but I am still learning to live with lung cancer, and what exactly that means. It could mean a lot of things, but for me it’s accepting that I have lung cancer, and then being able to escape that reality when I get the chance.

I think I am realistic, pragmatic and have a good sense of what makes sense; but do I? I bought a shirt at Opryland that says, “Denial is my happy place.” I do realize that denial contradicts acceptance, but denial for me is escaping reality. That is how I live with lung cancer, by living in the moment when I can. It’s a conscious decision and it’s easier said than done, but all of the scary uncertainties and worries in the unpredictable future are completely out of my control. That means living with constant fear and anxiety (which can be paralyzing) isn’t going to change what that future will be!

Lung cancer has beaten me down time and time again and it now has control over my body. It has definitely taken a toll on me, but I refuse to let it control my emotions, steal my joy, take away precious time with my kids, or dictate how I live. Lung cancer will always be my reality and so I will continue to speak, write, support, advocate, and do as the doctor says, but until I’m told otherwise, I will also continue to escape when I can, especially to Gumdrop and Lollipop Land.

It doesn’t have to be lung cancer. Everyone is fighting a hard battle and it’s all relative to our personal lives ~ Life can be hard! To quote Kenny Chesney’s song, Reality, “Everybody needs to break free, from reality!”