Best Lung Cancer Support Group That Never Meets

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On November of 2013 my 39 year old non-smoker wife was diagnosed with Stage 4 Lung cancer. They say you are never ready for this, but I think you are less ready at 39! From November 15th until December 7th when Molly took her first Tarceva pill, the news kept getting worst. We needed support and beside our close doctor friend Diana, nobody was able to make us feel optimistic about Molly’s disease. I was also getting tired being asked if my wife was a smoker. I got so tired of the question, that I started snapping back at people by saying “Yes, she smoked crack”! I was getting less than 4 hours of sleep per night and didn’t feel like being nice.

One of the biggest mistakes patients and caregivers make during diagnosis is looking up Lung Cancer on the internet. When you search for Stage Four Lung Cancer this is what you get, scary outdated data. According to this statistics, I will be a single dad before my youngest daughter turns 10. Wrong, these numbers are five years outdated and do not take into consideration important factors such as  age, or targeted treatment.

Another website that consistently comes up when you search for Lung Cancer is Inspire.com. Inspire is a site where patients and caregivers come for support and questions. I actually learned a lot about LC from this website, but since most people who post on the site are either at the very beginning or very end of their journey, it added to my anxiety.

I looked for support groups in our area, but most were very religious and the members were a lot older than me. I finally got lucky and signed up for LUNGevity LifeLine Support Program. I was introduced to Jason Feldman. Jason’s wife, Jill is not only a patient she was the president of LUNGevity at one time. I had finally met someone I could relate to, and the best part was that Jill called Molly and talked to her for over two hours. Only problem, Jill and Jason live in Chicago and we are in California. Thank god for social media.

Combination of having Jill & Jason’s support and Tarceva making Molly feeling better we started living a little more normal. As a natural peseimist, I needed more assurance that Molly was going to be around to see her grandchildren, so again I went on Inspire and asked the question. Once again I got lucky and met Celia. Celia is a successful CEO and a published author. She is also a LC patient who had been on Tarceva successfully for more than a year.

Within next few weeks I found #LCSM and started attending Bonnie J. Addario’s Living Room Sessions. Bonnie and her daughters have become like a second family to us. My daughters want to adopt her as a second grandmother. Ok, the fact that she has a pool in her backyard doesn’t hurt either 🙂

Soon I started meeting other patients and caregivers who were similar to us. When I first met Kathy, her husband was just diagnosed and she was pregnant with their first child. I met Tori on Twitter, when she was asking how other patients told their small children about cancer. I met Kelly on Twitter, and found LisaJanet and Deana online.

My favorite support is Sam. I found Sam on Twitter when she was cussing out her insurance company for denying her a life saving treatment.  She recently named her two remaining tumors after her insurance companies. Sam is a combination of Grace and vinegar. She is a an extremely intelligent woman who has been battling Lung Cancer for over two years. She and her beautiful daughter Karley live in Georgia. Sam’s situation is carbon copy of Molly’s. Both EGFR, both young and both non smokers. Sam makes me laugh, gives me hope and I feel so lucky to have met her. She is an evidence that there is good in the world. Oh and she is also a rapper, but you’ll have to ask her about that 😉

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Sam & her daughter Karley

Besides Lisa who lives close to us, I have never met any of the above in person, but together we have become the best support group in the world.

3 thoughts on “Best Lung Cancer Support Group That Never Meets

  1. That’s awesome. I also got to meet (and “meet”) a lot of good people in the last few months. Some give me hope, others help with a plan, and others are just there, writing about their journeys in a way that helps me deal with my own.

    Liked by 1 person

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