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February Survivor Spotlight - Susan Smedley Gerber

  • February 27 2017

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    February Survivor Spotlight - Susan Smedley Gerber

    As a new mom, the last thing I expected was a lung cancer diagnosis. But in December 1997, when my daughter was 11 months old, I found out I had a Stage 1 Carcinoid lung cancer — a rare, neuro-endocrine tumor.

    I had been experiencing breathing issues for over a year and even had an episode of coughing up blood during my pregnancy. Once my daughter was born, my doctor ordered an X-ray, which came back clear. Since my symptoms had subsided, I didn’t think about it again.

    Fast forward six months, to the next summer. We were living on a farm, so when my breathing issues returned — shortness of breath and wheezing –I wrote them off to allergies or asthma. I saw an acupuncturist for treatment, and after a cupping treatment, I ended up in the ER. Another clear x-ray.

    Several weeks later, I started coughing up copious amounts of blood that didn’t stop over the course of the Thanksgiving weekend. I went to urgent care, had another clear X-ray, and was sent home with another inhaler.

    That following Monday, my best friend dragged me to the doctor, our two babies in tow. The doctor ordered a bronchoscopy for the next morning, which revealed the cancer. Because the tumor was bleeding, I wasn’t allowed to leave the hospital. Two days later, I underwent a seven-hour thoracotomy surgery to remove the bottom two lobes of my right lung.

    I maintained hope by focusing on raising my then toddler daughter, and getting back to life. I would go to my follow up scans with her in her stroller, and it just seemed so surreal to me. There was no way I could fathom not being there to see her grow up, so I didn’t spend much energy going there emotionally. I had several recurrence scares during those first five years, but have been incredibly fortunate to get clear scans for the next 19 years!

    I also went on to have a healthy baby boy three years post-surgery, and later following a divorce, married my second husband, Trent. My family and best friend have been my biggest supporters, along with many friends I have made over the years.

    Susan and KendallNine years after my surgery, I was working in development for a Madison-area non-profit when fate had me cross paths with a woman who worked for Free to Breathe (then known as the National Lung Cancer Partnership). When I told her I was a lung cancer survivor, she asked me to speak at the local 5K. While doing research on the organization for my comments, I was shocked to learn about the dismal long-term survival rates. My experience speaking at the event made it clear how lucky I was to still be alive and healthy. I applied to the annual lung cancer summit to learn more, and within 18 months, I came on board as a Free to Breathe staff member in the events department.

    My husband and kids have been very involved in local Free to Breathe events and support my work and travel schedule – which can be extensive. They understand my need to pay it forward and use my voice to try to make a difference for others. Over the years with Free to Breathe, I have met so many phenomenal people who have received a lung cancer diagnosis, who fought with all they had, and are no longer here with their families. It’s not that I did things right and they did things wrong. I was lucky, plain and simple – and long-term survival shouldn’t be left to luck. We can do better than that. Researchers have projects that need funding and I will use my voice and skills to help raise the resources they need to give moms and dads, daughters and sons, friends and grandparents more time.

    One challenge other lung cancer survivors can probably relate to: I can’t count the number of times I’ve shared my diagnosis and immediately been asked, “Did you smoke?” That speaks to the stigma connected to this disease. Many people believe that only heavy smokers get lung cancer, ignoring the other factors such as radon exposure, heredity, and hormones. This belief also directly impacts funding for research and support programs, as many people believe lung cancer is a self-inflicted disease that is preventable. The reality is that no one deserves to be sick. We need to fight back against this kind of judgment and misinformation. Not only is it hurtful, it literally keeps patients and their families silent and in the shadows, afraid to ask for help.

    Nonetheless, it’s encouraging to see the advances that have taken place over the past 19 years. When I was diagnosed, surgery was the only treatment available. Carcinoid tumors did not respond to chemo at that point. Clinical trials were not available at that time.

    Over the years, I have had the privilege of working with dozens of committed advocates who have put heart and soul into hosting fundraising events for Free to Breathe. I have met hundreds of team captains, survivors, fundraisers and donors, all who care very much about changing the outcome of a lung cancer diagnosis while bringing lung cancer out of the shadows.

    I am particularly blessed to be combining my love of yoga with fundraising for lung cancer research and awareness through the launch of the Free to Breathe Yoga Challenge series. These events are full-day celebrations of breath, wellness and community that connect those impacted by lung cancer with the yoga and wellness communities. We are holding three Yoga Challenges this year, in Madison, WI; Baltimore, MD; and Seattle, WA.

    If you or someone you love has been diagnosed with lung cancer, order the free patient education materials from Free to Breathe. These materials will complement and likely expand on the information your doctor provides, and will give you questions to ask your doctor as well as a place to document your dates of treatment, side effects, and more. Steer clear of googling lung cancer statistics. YOU are NOT a statistic, and the numbers do not correlate to your specific situation. Explore changing your diet and adding complementary treatments such as yoga, massage, acupuncture, and reiki to help clear the toxicity of radiation and chemo. Make your health and well being a priority.

    And of course, I encourage you to connect with others in the lung cancer community by attending Free to Breathe events near you!

    6 comments

Comments

  1. Jim Pantelas 10:23am, 02/28/2017

    Love you Susan! Live LOUD!

  2. Nancy K Gatschet 12:05pm, 02/28/2017

    Susan - that’s the first time I’ve heard your whole story - what an inspiration!! Thanks for sharing it, and for the work you do with Free to Breathe!

  3. Jennifer Olson 08:20pm, 02/28/2017

    Thank you for sharing your story. What an inspiring one! And I love your comments about luck, stigma, and researchers needing funding! Thank you

  4. Bonnie Patrick 09:30pm, 03/01/2017

    Susan~ what an inspiring story of your journey!  I have never heard your whole story either, but WOW!  You are a true asset to Free To Breathe, & I am so glad you are a part of Dave & my circle of friends!!

  5. Cliff Norton 01:31pm, 03/02/2017

    I always think “....well dressed wolverine with the composure of Emily Post….” / resilient - determined - dogged focus / that is the Susan I have the privilege of knowing. Keep going…..just…..keep going!

  6. Wendy Santee 03:43pm, 03/02/2017

    What a inspirational story! I am so glad our paths have crossed and you are a part of our lives.  Free to Breathe is an awesome organization!

    Wendy

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