Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor

Lung Cancer Awareness Month 2015

Day 16: Kelli “Cat” Joseph, Survivor

“If there was ever a time in history to get lung cancer, that time is now.”

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

My own observation about the online lung cancer advocacy community: although smoking causes an awful lot of lung cancer, most advocates whose work I know about are never-smokers. Why aren’t more people with a history of smoking involved in advocacy work? I don’t know. The stigma against lung cancer runs deep in our culture, so shame and guilt may keep people silent, even when it’s in their own best interest to speak up.

I’ll say up front that I am an ex-smoker. I quit in 1981 after accumulating a 7 pack-year history. My cancer’s driver mutation is not usually seen in smokers so smoking probably didn’t cause it per se, but no one knows whether or not the first mutation that started me down this path happened back then, waiting patiently for other mutations to join it and create a cancerous cell. This post is Kelli’s show, not mine, but I have first hand experience from both myself and my loved ones of how cultural influences can make it easy to smoke, and of how hard it is to quit.

Kelli “Cat” Joseph is open about being an ex-smoker, and she is also open about believing that smoking caused her cancer due to the type she has. She quit her tobacco addiction 6 years before she was diagnosed with lung cancer. I’m very happy that she was asked to be interviewed during Lung Cancer Awareness Month to share her perspective on and experience with this disease. 

I interviewed Kelli over the phone, writing furiously as she shared her experience and ideas. She also shared her warmth and humor with me, and I hope you can see a glimmer of them in the interview.

Kelli, tell us about yourself.

I’m a 48 year old lung cancer survivor, currently NED (no evidence of disease). I am a wife to a gorgeous, caring, patient husband, and we are parents to a beautiful, loving, smart teenage boy who has been so resilient throughout the ups and downs of this cancer ordeal. He is amazing. I’m also a business owner. I have a bar called The Cuckoo’s Nest.

That sounds like a recipe for being very busy. Is it fun to be a bar owner?

Yes it is, and it’s even more fun now that the bar is smoke free. When I think of how much second hand smoke I breathed in from the age of 17, I’m very happy that smoking in my bar is now against the law.

What is your diagnosis, and what treatments have you had?

I was diagnosed with squamous cell lung cancer on Friday the 13th, January 2012 after a year of being treated for asthma. Nope, I didn’t have asthma after all. I had a lower and middle lobectomy of my right lung, followed by 35 rounds of radiation. Then I had a recurrence in a lymph node on my heart in 2013. My local doctors wouldn’t touch it so I went back to Northwestern University in Chicago, where the awesome surgeon who did my original surgery said she could take care of it. She did a VATS (video assisted thoracic surgery) procedure that involved going into the pericardial sac. I struggled with pneumonia and shingles for a year while recovering from this surgery. I’m also thankful for the fantastic, groundbreaking lung cancer oncologist who keeps me alive today. I’ve been NED since my last surgery.

What is a typical day for you?

I keep up with lung cancer social media as best as I can, but my family and business keep me busy. I do my best to enjoy each day. I couldn’t do any of this without help from family and friends because tiredness and nerve pain are still issues for me.

What is something that we might not know about you?

I’ve been heavily involved with an online smoking cessation support community for 12 years. Not everyone with lung cancer was a smoker, but the majority were and the more people I help quit now, the less disease we’ll have in the future.

My quit smoking sponsor’s birthday is August 1st which is also World Lung Cancer Day, and he was devastated when I was diagnosed. This year I decided to go all out to celebrate World Lung Cancer Day: I went sky diving. I loved it, and I’m going to do it again!

Here’s an odd story from my life: 18 months before I was diagnosed my beloved cat Rocco died of lung cancer. (Yes, I had smoked in the house when he was young.)

What do you want us to know about lung cancer?

The polarization between lung cancer victims who were smokers vs. non-smokers needs to end now so that we have a chance to get more funding. Funding for AIDS increased when people with AIDS stepped forward and said we don’t deserve this, no one deserves this. We need all lung cancer people to unite and step forward in the same way. We perpetuate the stigma when we ourselves in our LC community are shameful about smoking history.

Every lung cancer patient has had the experience of telling someone he or she has lung cancer, and having that person respond by asking “Did you smoke?”, rather than by saying they are sorry, or asking how you are doing. How do you respond to that question? Does it sting?

This question doesn’t sting me, because I hold myself accountable for my prior actions. I love this question because it gives me a chance to advocate against cigarettes. I grin and say, “Yes I did. If you smoke or have a loved one who smokes, please, please quit or help them to quit!” Hey, I don’t mind being a bad example, I’ve been one all my life one way or another. I’ll admit, there are ways of being a bad example that are a lot more fun.

The lung cancer advocacy effort focuses on a message that “anyone can get lung cancer”, and can get perturbed when major cancer organizations focus on smoking cessation as part of lung cancer awareness campaigns. How can we better balance positive attention to our disease with an important message of disease prevention that could save many lives?

Common sense would dictate that if we could eliminate smoking, we could eliminate 80% of lung cancer cases. Just think of how many resources that would free up to help non-smoking lung cancer victims. We need to come together and support lung cancer prevention as well as better treatments.

I support low dose CT scans for everybody starting at age 30, with repeat scans every five to ten years for those who have negative scans. Anybody can get lung cancer, so let’s screen everybody, not just people over age 55 with a long-term smoking addiction. I hope that’s something the entire LC community can also support.

What brings you hope?

If there was ever a time in history to get lung cancer, that time is now. New discoveries are happening in leaps and bounds. Government funding is increasing but we still have a lot of work to do to make it comparable to the funding that is awarded to other, less deadly cancers.

Twitter handle: @thecuckoosnest

Yesterday’s interview with Lucy Kalanithi was on Lisa Goldman’s blog Every Breath I Take.

Tomorrow’s interview with Kim Ringen will be on Tori Tomalia’s blog A Lil Lytnin’ Strikes Lung Cancer

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.