A Lung Cancer Blogger's Story

A Lung Cancer Blogger's Story

I’m a long-time blogger who will celebrate the 10th anniversary of writing my first blog post this coming Christmas Day. My blog used to be about work, my family’s adventures on our sailboat, the things I knit, my daughter’s growth from teenage years through college. When I was diagnosed with stage IV lung cancer in June 2014, my blog’s focus changed to what it’s like to receive such life changing news, how to live with a terminal disease, and fact-based reports about lung cancer, with a smattering of family and knitting news. Now I am retired and the sailboat has been sold to another family. I’m leading a quiet and thoughtful life, still full of knitting and reading and searching for new knowledge. I recently realized that the purpose of my remaining life is to AMPLIFY - to spread news about lung cancer research, survivorship skills, and everything else I find fascinating as widely as I can.

Medical information about me: I have stage IV adenocarcinoma with an EGFR exon 19 deletion mutation and also a T790M mutation that developed in my first line of treatment. My treatments to date: erlotinib for 10 months, then a phase 2 clinical trial of rociletinib for 8 months, and most recently osimertinib for 8 months and counting. I am currently feeling shockingly well. I am a realist, however, and know that this lovely period will not last forever. I expect my next line of treatment to be chemotherapy with carboplatin and permetrexed. I also was diagnosed with Multiple Sclerosis nearly 20 years ago, but this condition has long been stable and it feels like a minor issue these days.

Personal information about me: I just turned 65, an age I wasn’t sure I was going to reach. I’ve been married for 35 years. We have a son from my husband’s first marriage, three grandchildren who are in their teens and 20's, and a daughter. Our daughter is a biostatistician in a post-doctoral fellowship with the National Cancer Institute, so I can always get good explanations of what those numbers mean in research papers. I worked as an accountant for a non-profit organization, and am quite interested in the financial implications of cancer treatment. I live in northern New York, in the foothills of the Adirondack mountains. My husband and I own 135 acres of mixed hardwood forest and beaver pond, and our owner-designed and built home is surrounded by trees, and gets its electric power from solar panels.

I'm looking forward to being involved with this community.

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8 Replies

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  • Anita, I feel I know you so much better. You answered questions I never thought to ask you. We live in such different worlds but this cancer intersection brought us together as friends and fellow warriors. For that I am grateful.

  • Awwwwww Denise! Thank you. I'm sure looking forward to the next time our paths cross.

    Anita

  • @scifiknitter Hi i'm Jo I for one will be glad your on here. I have the same kind of cancer. But was never told about any mutations. I am in remission its been three years the last time my oncologist said it wasn't in my lympnodes it was no where. I didn't go through radiation. I was on chemo for six months. Itwas taxetere and carboplatin they tried taxal and I had a bad reaction they thought I wasn't going to make it. But here I am. I know it can come back.It is stage three. Welcome Jo Taylor

  • Thanks for the welcome, Jo!

  • Thank you - you have a gift with words, bringing us right into your life. I can smell the forest and see the sun reflecting on the pond. I love your comment about leading "a quiet and thoughtful life"... that seems clear in how you express yourself. Welcome and please visit often!!

  • Thank you, Peggy. I will be sticking around.

  • Hello scifiknitter. You write beautifully. It is great to be in a group of people who all have one form of lung cancer or another. It's easy to relate to the stories. I am on my third bout of small cell lung cancer. I had chemo and radiation the first time I was treated. The second time was straight chemo. This time is am on a immunotherapy drug called keytruda. Instead of everyday, as before, I have infusions of keytruda every three weeks. My hair fell out the first two times. I am told I will not lose my hair this time. I was very sick when undergoing chemo the first two times - nausea, unable to eat, tired all the time, and I gained weight.

    Thank you for sharing your story with us. You are a brave soul. I wish you healing and back to health soon. You will be in my prayers.

  • Kate, thank you. You are pretty darn brave yourself.

    You are right on the cutting edge with immunotherapy. I understand the side effects are a lot less than with chemo. Here's hoping that you have a good response!

    Anita

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