Lung Cancer Awareness Month — #433aday is a National Emergency
November is Lung Cancer Awareness Month. To mark the occasion, I posted a life lost to LC every single day of the month on both my public and my personal Facebook pages. For those of you who don’t follow me on Facebook, I have collected all 30 of them here (plus 3 extra). Yes, I know, this makes for a very long post. But, I must put this in perspective. Lung cancer kills 433 people EVERY DAY in the U.S. alone (to give an idea of the scope, last month the President declared a public health emergency for the opioid overdose epidemic which kills 91 Americans die every day). My list of 30 barely represents how many Americans will die of lung cancer in the next 90 minutes. None of us is immune and it’s time we all paid more attention to it. Give yourself a few minutes to scroll through these 30+ souls and soak in the magnitude of the problem we face.
If you want to help, spread the word, help us dismantle the stigma and perhaps consider donating to a cause that supports lung cancer *research* (if you need a suggestion, here’s my favorite: https://www.supportalcf.org/lisagoldman )
November 1: Today I am kicking this off with the first person I knew who died of lung cancer. Her name was Jen Bulik Lang. She died at age 35, 10 months after her diagnosis, and less than 3 months after marrying her love Jeffrey Lang. I think of her often.
November 2: Today, I remember Stuart Grief. He was a smart, kind, funny man dedicated to the people and causes he cared about. He was such a loving husband and father. He was a fellow ROS1der, part of our initial patient leadership team, and I consider myself lucky to have known him. He was 55, and died less than 2 years after his diagnosis. His death hit me like a ton of bricks and left a permanent bruise on my heart.
November 3: This is Susie Klein. She died last year, at age 60, 9 mos. after her diagnosis. I got to know her through her son Adam Klein, who spoke of her during his season on Survivor and launched a LiveLikeSusie campaign (https://www.youcaring.com/
November 4:This is Elizabeth Dessureault. She was diagnosed at age 26 while 5 mos. pregnant with the baby you see in her arms here. She died less than 2 years later at age 27. Lizzie was an enthusiastic advocate and fellow ROS1der, active in our ROS1+ community. She beamed positivity and was a beacon for many. Her passing rocked the LC community earlier this year. In honor of LCAM, her mother is selling Lizzie’s Just Breathe products this month (see: https://fromlizzieslungs.com/2017/10/31/remembering-lizzie/).
November 5: Meet Burton. Burton was diagnosed in 2011 at age 23, just a month after beginning his relationship with his heroic caregiver girlfriend Emily Hsiung. Doctors didn’t discover and target his ROS1+ cancer until very late, but he still managed to survive and live for over 3 years, doing things like getting his masters degree from Harvard University GSD and going to Burning Man (see pic). Burton died in October 2014 at age 26. After Burton passed, Emily sent me Burton’s compression socks to help me with the treatment-induced edema that plagues me and used to plague him. I still have Burton’s socks in my drawer.
November 6: This is Katie Cohen. She was diagnosed in January of 2015 at age 32. She died at age 34 on 4/8/17, less than a year after this photo was taken. In her two years post-diagnosis, she got married, saw her mom also die of lung cancer, traveled, started a blog and advocated to make more treatments available to LC patients. I never met her in person, but we chatted online several times. She was so full of life, so motivated to do whatever she could with the hand she’d been dealt. If I may flatter myself, I think we each recognized a bit of ourselves in the other.
November 7: Meet Joan Fong. Like me, Joan started having symptoms in October of 2013 and soon after was shocked by a Stage IV LC diagnosis. She survived 45 months, going through _15_! lines of treatment. She passed on 7/29/17 at age 59. To me, the most remarkable thing about Joan was her irrepressible smile and spirit. I chose this photo because, who smiles with glee with their brain radiation mask?! Joan does, that’s who. Last year, I sat next to Joan at the annual Bonnie J Addario Lung Cancer Foundation Gala dinner. Sadly, she won’t be there this year, but her husband Ron will be, and he’ll receive the well-deserved Caregiver Award (along with Arash Golbon, Molly‘s husband).
November 8: This is Brian Kissinger. Brian had been an active and well-loved member of the LC community for years by the time I met him at the ALCF Gala in 2014. He was diagnosed at age 33 just a few months after he and his wife welcomed their son. Brian survived almost 6 years, passing away 11/6/15 at age 39. A never-smoker (like many of us, incl. many I’m listing this month), his disease shocked him so utterly, he had to have the doctor spell out the type of cancer 4 times before he comprehended the news.
November 9: Today I remember Jennifer Glass. I met Jennifer at Commonweal, where we spent an intense and life-changing week together (with 5 other participants) in their Cancer Help Program. She had been diagnosed a year before me at age 49, and had already established herself as a force in the blogging world and later as an advocate for Compassion & Choices. Our bond went deep. We had plans for a visit when she entered hospice, but she spiraled down too quickly, passing away at age 52 in August 2015. In one of her last emails to me she wrote “you are a bright star in my night sky.” Now, when I look up at the sky, I think she had it backwards: she’s one of the stars in my night sky. (This photo is of her on her long-awaited wedding day to her beloved Harlen, with her step-children, just 4 months before her diagnosis upended everything.)
November 10: This is Jillian Miller. In 2012, she was a vibrant 28 year old working as an RN and pursuing a master’s degree. In May 2013, Jillian passed away, only 10 months after receiving her diagnosis. I learned about Jillian through her devoted mother Ros Miller, whom I met at a lung cancer conference in 2015. Honoring her daughter’s memory, Ros remains an active LC advocate today, more than 4 years after losing Jillian.
November 11: This is Keasha Rutledge Draft. Keasha was an electrical engineer, a professional dancer, and the wife of Chris Draft. She was diagnosed at age 37 and passed away only one year later. She must have been a phenomenal woman because she not only married a wonderful man, but inspired him to launch a campaign to “Change the Face of LC.” I never had the pleasure of meeting Keasha, but I and thousands of other LC patients around the world know her through our cherished & tireless champion, Chris Draft.
November 12: Meet Oren Miller. Oren passed away on 2/28/15 at age 42, only 9 months after he was diagnosed. He was well known for his groundbreaking bloggerfather.com blog, and transitioned quickly into blogging about his experiences with LC. A beautiful writer, he brought me insights, and tears, more than once. I had just started to get to know him, and then he was gone – yet, so strong was his voice, that I still miss him.
November 13: Paul Kalanithi:Paul Kalanithi: neurosurgeon, writer, gorilla-suit-wearer. Paul died at age 37, 2 years after he was diagnosed. His #1 NYT best-selling book, When Breath Becomes Air, is a masterpiece.
Paul’s death, coming just days after Oren Miller’s, shook me. I didn’t know Paul personally, beyond initial introductions, but his writing was a lighthouse helping me navigate very tricky waters. On the morning of Paul’s memorial, I lay on my acupuncturist’s table, tears streaming down, pooling in my ears until they spilled onto the pillow. I went straight from there to the memorial. I ended up seated behind his wife Lucy, their daughter Cady held over her shoulder, looking backwards at me. Although Cady arguably suffered the greatest loss from Paul’s passing, as a baby, she had a preternatural calm, her infancy rendering her oblivious, or perhaps simply accepting. I looked into Cady’s big saucer brown eyes and breathed. The tears slowed some. My breath became air … and then breath again. Lighthouse or no, I would go on. Paul taught me so.
November 14: This is Michael Volding. Michael passed away at age 51, 17 months after his diagnosis. Michael was active and fit, discovering his cancer because of some back pain during a run. In this picture you see him after a race he completed less than 6 mos. before he passed away. He left behind four young children and his lovely wife Emily Olson-Volding, whom I became friends with first online and later connected with in-person at an ALCF Gala.
November 15: Meet Alisha Douglas. Diagnosed at age 27, she was extremely fit, a regular participant in triathlons and other races. A fellow ROS1der, she had just barely found/joined our group when she passed away in 2016, little more than year after she was diagnosed, and just two months after she married her husband Jon. I wish I’d had a chance to get to know her.
November 16: This is Brad Chindamo. He was diagnosed in January of 2016, and gone 20 months later at age 48, leaving behind a wife and three children. He was athletic, playing college basketball and other sports. I only just learned that about him today. The thing that I remember him for is being a pioneer – one of the very first ROS1ders in the world to take the Phase 1 drug TPX-0005. In Phase 1, researchers start with very small doses until they understand toxicity levels. This drug holds a lot of promise, but Brad likely did not receive enough of it to be effective. He shared his experiences with our ROS1 group and we all learned and benefited from him. I’m so grateful to him. I may very well take this drug one day, and if I do, I will raise a toast to him as it goes down the hatch.
Note: I know the temptation is to assume that all LC patients smoked, especially those that are not younger than 50 at dx. But, Ide Mills, like so many LC patients did not smoke. All you need for LC is lungs. Stop the stigma.
November 18: This is Dana Reeve. She was diagnosed just 10 months after laying her husband, actor Christopher Reeve, to rest (and after spending a decade working with him on rehab and disability awareness). At age 44, just seven months after announcing her diagnosis, she was gone, too, leaving their 13 year old son an orphan. In Chinese medicine theory, I am told that each organ correlates to an emotion, and the lungs are associated with grief. I don’t know if I fully believe that theory, but it certainly seems apt here.
November 20: Meet Abby Wilson. Abby had a persistent cough and was diagnosed as asthmatic at age 2, despite not presenting as asthmatic. Symptoms became so severe that a few years later she passed out and was given a CT where a large mass was found in her lungs, yet doctors still refused to biopsy the mass for 2.5 years because “kids don’t get LC.” She was finally diagnosed at age 9 with stage IV LC. Abby received chemo every 21 days of her life for 8 years, finally getting a treatment break and enjoying graduating from high school and her first semester of college. I chose this photo because Abby loved animals and was studying to become a Wildlife Rehabilitation Specialist. She passed away this June at age 19, while en-route to a cancer center seeking new treatment options.
November 21: Today I remember Craig Blower. Craig started experiencing a persistent cough back in 2010. Despite not responding to a series of treatments (antibiotics, steroids, an inhaler, more steroids), his doctor — stop me if you’ve heard this one before — assuming a non-smoker couldn’t have LC, didn’t order a chest CT for 3 years. Craig and I connected as fellow bloggers, and later met in person at an LC conference. I loved him for shamelessly cracking one “dad joke” after another on his blog, making light of impossible situations, and ending every post, except his last, with “Business as usual. Day at a time.” (His last post conceded that business was no longer as usual.) Craig passed away on 3/16/16, about 3 years after he was diagnosed. He was 63.
November 22: This is Jill Costello. I never met Jill, but I have a soft spot for UC Berkeley grads, and she was a particularly outstanding one. Diagnosed the summer before her senior year, she stayed in school while enduring brutal chemo and radiation. As if that wasn’t enough, she remained an active member of Cal’s varsity crew team, receiving the PAC-10 Athlete of the Year award (among many other awards, too many to list here). She did this all while maintaining a 4.0 (seriously unbelievable) and spearheading the largest lung cancer fundraiser in history at the time ($45k for research). Sports Illustrated considered Jill’s story one of the 60 best stories to ever run in the magazine.
Jill passed away a year after she was diagnosed, on 6/24/10. She was 22 years old. As testimony to her enduring influence, the “Jill’s Legacy” group continues to raise awareness and funding. I just spoke to her college roommate and best friend K.C. Oakley last week about future Jill’s Legacy events.
November 23: This is Fredi Kronenberg (pictured here with her friend and famed wellness cookbook author Rebecca Katz). Fredi was an alum of Commonweal, which is how I learned of her and her work. She was a brilliant physiologist, championing the cause of integrative medicine in the worlds of academia and clinical research for decades. Fredi had been director of the Rosenthal Center for Complementary Medicine at Columbia and she was also on the adjunct faculty at Stanford. Her original prognosis was less than 2 years, yet with her scientific acumen and leverage of every imaginable combination of standard, experimental and integrative medical practices, she lived with advanced LC for a decade. I am so grateful for her work and her example. She passed in April 2017 at age 67.
November 24: Today, I remember Lesley McAllister. Lesley was diagnosed a few months before me, and we found each other through Eric. Lesley’s resume was impressive and included an engineering degree from Princeton, a JD from Stanford, a PhD from Berkeley, Peace Corps in Costa Rica, a Fulbright scholarship, a federal judge clerkship, and a tenured professorship at UC Davis Law School. She was passionate about the environment both professionally and personally, traveling, hiking and biking in remarkable locations throughout the world, often solo. I could easily get intimidated chatting with such a remarkable person, but Lesley was totally down-to-earth. We shared thoughts on both our traditional treatment options, and some alternative ones. When she went to Brazil last year, she brought us back some “magic pills” (harmless herb supplements blessed by famed healer John of God). We both figured “WTH, can’t hurt.” Unfortunately, they didn’t seem to help her much. Maybe I got the better bottle (I’m sorry, Lesley). Lesley died 8/30/17 at age 47, leaving behind her husband and two young children.
November 26: Meet Susan Rosell. She passed away at age 56 on 7/2/17, just a few days after my friend Molly, and I was in a daze. Suzi was such a fun woman. I picked this picture of her at the Blue Lagoon in Iceland to represent her love of travel and adventure. But, she had many other passions. A foodie, she ate at French Laundry at least a dozen times! I also just learned that she was a sci-fi fan and attended a Hogwart’s Triwizard Tournament. Plus, as a fellow cat lover, she fully supported and encouraged my crazy cat posts – a sure way to win my heart.
November 27: This is Filip Calis, husband of Leen Bruggeman. Filip was a wonderful father of two, a hard worker and sportsman who ran marathons and once even 100km’s in an international competition. He was diagnosed in Oct 2014 and ran out of options in March 2016, at age 44. Filip and Leen were early members of our ROS1+ Facebook group. They did everything possible to extend his life, including accessing cutting edge medications through trials and compassionate use. Leen continues to stay in touch with the ROS1der group and will always be welcome there.
Losing fellow ROS1ders hits especially close to home, and we have lost too many in the short time our FB group has existed. There are not enough days in November to feature them all, but I would at least like to post their names:
Arne Steding age 33
Stuart Grief age 55
Edgar Dinkelaar age 36
Beverly Kilzer Nott age 39
Nora Reyes age 60
Filip Calis age 44
Lisa Hampton age 42
Stephanie Polecastro age 31
Gerty Fleurkens age 47
Nicola Ueber age 41
Elizabeth Dessureault age 27
Jing Lin age 43
Nicolina La Ferrara age 67
Scott Nierfro age 54
Allan Berke age 57
Steve Fox age 33
Jason Flory age 46
Brendan Russell age 44
Tanya Sazama age 39
Brad Chindamo age 47
Alisha Douglas age 28
Luke Fordward age 34
Dave Bergman age 37
Tracy Ann Gordon age
Michael Burton age 23
Travis Goodnight age 39
November 28: Meet Jeff Rusch. He studied poetry and writing at Stanford and Yale. Later, he founded the 964 Natoma warehouse, a thriving culture hub in San Francisco from 1994 to 2005, where he met his wife Zoe Keating as she started her music career. Jeff quit his 15 year job as a UI Designer at UC Berkeley when their son was born and the family spent the first years of Alex’s life on tour. Jeff took on parenting logistics as a design challenge: he had a stylish satchel full of everything he’d need to change a diaper or amuse in a nightclub, restaurant or airplane. He packed a portable crib in his luggage that went in Zoe’s dressing room. Jeff’s parenting enthusiasm and partnership made Zoe’s full-time music career possible and she says she is still trying to figure out how to do it without him. Jeff was 51 when he was diagnosed; he passed away 9 months later.
November 29: This is Chip Kennett. Like my friend Corey, Chip received his LC diagnosis after discovering a blurry spot in his eye. At the time, Chip was 31, he had a 2 year old, and his wife Sheila Kennett Johnson was pregnant with their second child. Chip was a former Senate staffer, soccer dad, avid golfer, and even Tough Mudder competitor. He passed a little over 2 years after his diagnosis.
November 30: Today, I remember Molly Golbon. I’ve already written a whole memorial blog about Molly, so this is a little redundant, but I could hardly leave her off my LCAM memorial list this month. Molly was a devoted wife and mother to her young girls. She was passionate about her career. She enjoyed travel, yoga and dogs, and hated cooking. I miss her. She left a hole that can’t be filled. I have met and made many other wonderful LC friends, but the bond formed with Molly, when we were both in the early throws of diagnosis, will always stand apart. It reminds me of the bonds I formed with the other new moms I met when we each had our first children and shared those tumultuous early months together. Our worlds shifted so radically, and in parallel – we shared a unique connection. Molly passed away this summer at age 42, 3 1/2 years after she was diagnosed.
“November 31, 32, and 33”: During the month, while I was posting these daily memorials on Facebook, I was contacted by three people who wondered if I might also honor their loved ones. I had already planned out my daily posts for the month, but I would like to include them here.
This is Rick Moeller. Rick passed last year at age 56. He had the uncanny ability to make everyone feel special in their own way. He was full of life, bigger than life, loved by many, and simply made this world a better place. He is greatly missed by his wife, children, family and friends.
This is Rich Pollard. He passed Sept 5th 2017. He volunteered at the cancer center and gave everything he had until his final days. His daughter Tammy sweetly reports that “he was the best.”
This is Brittany Coppedge. In September 2006, Brittany didn’t feel well. The doctor gave her antibiotics. They didn’t help. She continued to go through the drill: more coughing, tiredness, weight loss; more antibiotics, inhalers, and misdiagnoses, until she ended up in the ER. On December 3, she was finally diagnosed with lung cancer. A very short 25 days later, this 13 year competitive gymnast passed away. She was 19 years old.
Epilogue: Fallen Trees are Nurse Logs
Sadly, Beth Caldwell, a fierce metastatic breast cancer advocate, died earlier this month. In September 2016, Beth used a beautiful metaphor to help her cope with the devastating and constant stream of loss in the metastatic community and I think it’s a perfect way to conclude this tragic litany of 30+ souls lost too soon. Beth wrote: “The only thing that brings me any sense of meaning these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing.
“And someday this forest will cover the world.”