Passion Is Her Middle Name

Lung Cancer Heroes®CURE® Lung Cancer Heroes® 2020 Essay Book
Volume 1

"Jutta Becker does not wear a cape and she cannot fly, but she does soar," writes a colleague nominating Becker for the Lung Cancer Heroes® award.

Not all heroes wear capes or have superpowers. Rather, according to actor Christopher Reeve, “a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.” Jutta Becker does not wear a cape and she cannot fly, but she does soar. Jutta is dedicated to educating and raising awareness about lung cancer. She inspires others to fight back and make lung cancer a stigma of the past. During her quest to save others from the deadliest cancer, she undergoes lung cancer treatments, all while maintaining a positive attitude and a heart full of gratitude. My American Lung Association colleagues and I have been blessed to serve and learn from Jutta. Let me share some more about why Jutta Becker deserves to be recognized as part of the inaugural 2020 class of Lung Cancer Heroes®.

Jutta Becker

Jutta Becker

Jutta Becker was born in Idar-Oberstein, Germany, and moved to Providence, Rhode Island, in 1975. She resides in North Smithfield with her husband of 40 years, Mustapha Gharaee, and their rescue beagle, Paisley. Jutta and Mustapha have two adult sons, Ryan and Erik. Jutta spent an ample amount of her career as a goldsmith and jewelry designer. She loves spending summers at their beach house in Matunuck, Rhode Island.

In August 2012, Jutta had a cough, which she thought was due to seasonal allergies because she felt well and went to the gym several times a week. Pain from a so-called pulled muscle from coughing was enough to send her to her physician’s assistant, who ordered an X-ray, which showed pneumonia. Four weeks later, she was still coughing at her follow-up appointment, at which time she was given the choice of more antibiotics or a visit to the emergency department. Jutta luckily chose the emergency department and was given a CT scan as part of the testing process. On August 3, at only 58 years old, Jutta was diagnosed with lung cancer. Three days later, she left the hospital with a stage 4 non-small cell lung cancer adenocarcinoma diagnosis and a prognosis to “get her affairs in order.” A few years later, another biopsy was performed that resulted in better news. Her oncologist told her she had a rare gene mutation known as epidermal growth factor receptor positive. A small percentage of those diagnosed with non-small cell lung cancer have this mutation, which is most often found in nonsmoking women of Asian descent. As previously mentioned, Jutta is German. Several different types of targeted oral chemotherapy medications, more genomic testing, another positive mutation (T790) and a different targeted oral therapy, followed years later by radiation and chemotherapy, Jutta Becker today is an eight-year, stage 4 non-small cell lung cancer survivor! She continues to fight, not only for her life but for better lung cancer treatments and cures for everyone.

When Jutta was first diagnosed, she immediately went to work learning as much as she could about lung cancer and effective treatments. Before she could educate others, she knew she first had to educate herself. Jutta said, “The toughest part was deciding on this path of targeted medicine as opposed to standard chemotherapy. It took a lot of research, finding people who have gone through the same treatment and learning about all the up-and-coming treatment options. We, as patients, have choices now, and doctors leave those choices to us. We, or our caregivers, need to be educated to advocate for us and make the best possible decisions.” She became involved with the GO2 Foundation for Lung Cancer, the Dana-Farber Cancer Institute and the Bonnie J. Addario Lung Cancer Foundation. She attended forums, trainings and events, and she scoured the internet for lung cancer information from trusted sources.

During this educational journey, Jutta found the American Lung Association and became involved with our LUNG FORCE movement. LUNG FORCE unites women and their loved ones across the country to stand together for lung health and against lung cancer. Every five minutes, a woman in the United States learns she has lung cancer. Jutta was compelled to join the movement because she believed that more needed to be done to raise awareness and that more research funding was needed to defeat lung cancer. She was a LUNG FORCE pioneer and has been actively engaged since the movement first began. Jutta attended the inaugural Rhode Island LUNG FORCE luncheon kickoff event. She became an avid LUNG FORCE social media educational ambassador, echoing messages about lung cancer facts, screening, the importance of early detection and treatments. Annually, during National Women’s Lung Health Week, she participates in the LUNG FORCE Turquoise Takeover by attending kickoff events and asking everyone to “paint Rhode Island turquoise” to raise awareness about lung cancer. Jutta has been involved in all Rhode Island LUNG FORCE Expos since they debuted. Jutta is an active member of the LUNG FORCE Expo planning committee, has participated on lung cancer treatment educational panels, has shared her story during lunchtime LUNG FORCE presentations and has even served as a master of ceremonies for the patients and caregivers tracks.

In 2015, Jutta appeared on a live PBS broadcast to share her story and promote lung health. She believes that “primary physicians protocols need to be changed; CT scans need to be available earlier for everyone, not just those aged 55 and older who smoke; people of all ages, smokers and nonsmokers alike, need to have access because lung cancer can affect anyone.” Simply put, she says, “if you have lungs, you can get lung cancer. Keep an eye on your body, listen to your body, tell your physicians everything. I was employed in the jewelry industry and this never came up.”

Most recently, Jutta has taken to her Facebook page to provide advice during the COVID- 19 pandemic. A recent post stated: “As a (patient with cancer), I have mastered the art of isolation and social distancing. Once a person is diagnosed with a terminal illness, isolation is automatic. Except for a small group of very good friends, this has been my experience. Best part of my life is Paisley, my rescue beagle. If you are newly isolated because of the current situation, relax; it can get easier. Make your home your sanctuary and be thankful for what you have. If possible, rescue a cat or dog. You will have an instant best buddy. There is no greater feeling than to be loved and needed. Check out the shelters. Stay safe.”

“Passion” is Jutta’s middle name. She is a seasoned advocate who is persistent about continuously advocating for a better quality of life for everyone who is affected by lung cancer. Each year, Jutta participates in the Rhode Island LUNG FORCE Walk. Held nationwide, LUNG FORCE Walks are an outdoor event series to support and promote lung health. Family, friends and co-workers gather for a morning of healthy activity and purpose. Walks provide critical funds for lifesaving research and early detection initiatives. Every year, Jutta serves on the Rhode Island LUNG FORCE Walk planning committee. As the team captain of “Jutta’s Amigos,” she raises funds, she walks and she advocates. Collectively, Jutta’s teams have raised more than $15,000.

“Dear friends, my friends have always been supportive with my fundraising marathons and walks, but this is the first time I benefit personally from your gifts. I am alive because of a gene mutation in my lung cancer and the development of a drug to attack that mutation. I’m part of a small percentage of patients who get a bit more time because of these drugs. That small percentage translates into hundreds of thousands of people worldwide (now helping) me raise funds towards finding a cure. A big thank you to all,” she posted.

Last year, before the walk, Jutta was hospitalized for five days, but that didn’t stop her from advocating, “First-class ride to The Miriam Hospital. Going to spend a couple of days in the drainage department. Seems my chest is full of fluid and there is no room for air. I’m hoping to recover by next Saturday for the LUNG FORCE Walk at Roger Williams Park in Providence, Rhode Island. Please register and/or donate under my name or team ‘Jutta’s Amigos.’”

Nor did it stop Jutta from attending this event with her team. “I’m home from the hospital on oxygen and will be at the walk. Walking is out of the question this year. What I am experiencing, is pleural effusion linked to my lung cancer. This is a very uncomfortable situation where the fluid displaces the lungs. The lungs collapse leaving me short of breath. I had over two liters of fluid removed but it will come back. Most likely I will have a permanent spigot installed. This all reinforces my need for research dollars.” And she did not stop there. If LUNG FORCE is having a fundraiser, Jutta shows up.

Additionally, Jutta is highly engaged in state and federal advocacy initiatives, which include signing petitions and encouraging others to follow suit; making phone calls, sending emails and meeting with state and federal legislators to educate and advocate; and making her voice known on social media platforms. Her advocacy asks include providing equal access to quality and affordable health care insurance for all (including protecting patients with pre-existing conditions, enshrining consumer protections into state law and not repealing or rolling back the Affordable Care Act); raising the minimum tobacco sales age from 18 to 21; ending the censoring of science, which could lead to air pollution policies that fail to protect the public; and protecting kids from an overabundance of electronic cigarette advertising. Here are a few of Jutta’s advocacy messages: “My first medication was $6,000 per month. The second medication I received was through participating in a clinical trial for almost two years. I am now on Tagrisso (osimertinib), which is $16,000 per month. Without my health care insurance covering the medications, CT scans, biopsies and constant monitoring of the disease, I would be dead. I’m doing quite well considering my diagnosis. The added stress and worry of some of the proposed changes for the health care insurance industry are bringing on a new kind of anguish. It’s frightening.”

“November is lung cancer awareness month. Where are the ribbons? Where are the stories of survivors? Where are the walks/runs/bake sales to raise funds? Where are the clever T-shirts? Where is the funding? Why is it my fault I got this? Why do the insurance companies cover drugs for other cancers but not lung cancer? Why is there no celebrity to fight for lung cancer? Why does everyone ask me if I smoked? Why do I have to lie when I’m asked how I feel? Why are kids getting diagnosed with lung cancer? Why does it take a community hospital 30 to 45 days to diagnose lung cancer? Why am I even asking all this? There should be no classism in cancer. Support lung cancer research, please.” I would be remiss if I didn’t mention that Jutta Becker volunteered and was chosen twice to attend LUNG FORCE Advocacy Day in Washington, D.C. Advocates from across the nation joined together as one force, turning Capitol Hill turquoise, and talking with their members of Congress about pressing lung cancer matters. “Nailed it. Senator Jack Reed is fighting to increase funds to the National Institutes of Health (NIH). Dr. Collins, head of the NIH, has been the biggest supporter of genomic research for the past 25 years. Thanks to his efforts, I’m getting the drugs I need. Quite an experience and civics lesson for a girl from a small town in Germany.”

Inspiring others to stand up against lung cancer and associated stigma is ingrained in Jutta’s DNA. If there is an opportunity to publicly speak, Jutta embraces it. For two years, Jutta has volunteered at the Autumn Escape Bike Trek fundraising event, which is a one-, two- or three-day bike tour across Cape Cod. The Massachusetts trek is designed for experienced and novice cyclists alike. On the final night, participants gather in the outdoor amphitheater for the “Spirit of the Trek.” One time, Jutta was invited to take the stage and share her story. It was emotionally charged, bringing many to tears. Jutta inspired everyone to keep on trekking, to stand up against lung disease and surrounding stigma, to raise their voices for clean air and protection from harmful air pollution. She asked participants to ride and fundraise for not only her but for everyone who has lung cancer and lung disease. The following year, Jutta volunteered again, this time for two days, cheering riders on as they crossed the finished line and awarding medals when riders completed the trek.

If there is an opportunity to raise awareness about lung cancer, Jutta seizes it. Jutta has shared her story with hopes of educating large audiences through the Providence Business News and HuffPost website. “I really didn’t know anything about lung cancer before my diagnosis. I saw lung cancer as a smoker’s disease, and I was never a smoker. I thought that people in heavy industries, such as coal mining, who inhale toxic chemicals, got lung cancer. I never thought of it as a disease affecting women on a grand scale, but it does. I want people to know that.” “It’s really important to educate yourself and serve as your own advocate,” Jutta says. “Make sure you get all the scans you need and make use of all diagnostic tools. Find a doctor who is committed to fighting for your life and committed to helping you establish a good quality of life. Keep in mind that a second opinion can save your life. It’s very important to build a team of oncologists, pulmonary, palliative, alternative treatments, mental health, social and spiritual support.”

Through all of life’s challenges, Jutta has kept a positive attitude. I think Jutta’s son Ryan said it best: “If I’ve learned anything from my mother, it’s that life isn’t about the ‘what if,’ it’s about the ‘what now?’ When you get the call, answer it with gusto ... and a smile. Be excellent to each other. We’re all we’ve got.”

Jutta is one of the most appreciative people I have met, and her gratitude has no bounds. “To all who helped me reach my fundraising goals this year, especially for the LUNG FORCE Walk, a huge thank you, Merry Christmas, Happy Hanukkah, happy life, good health and a great new year.” One year, Jutta accepted an invitation to share her story with a group of 80 American Lung Association public health professionals. She traveled two hours each way, and when she was done educating us all, she thanked us for everything that we do. There wasn’t a dry eye to be found and she received a standing ovation that went on for several minutes. Simply put, Jutta forgets no one. “Still here because of Dr. David Jackman. Thank you. Five-year anniversary today since diagnosis.”

Jutta Becker is anything but ordinary. A quarter of her personal Facebook posts focus in one way or another on lung cancer advocacy, education, inspiration and appreciation. Couple this with the exorbitant amount of time she has spent volunteering and making a difference in the lives of everyone affected by lung cancer, you unequivocally, undeniably have a hero in need of recognition. Please consider providing this hero with her turquoise cape with the letters “LC” plastered across the back. Thank you for the opportunity to nominate this extraordinary woman and for everything CURE® magazine is doing to support lung cancer advocates.

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