I put this blog and website aside after I was diagnosed with advanced fallopian tube cancer in December 2016. After years of travel blogging and bike travel and taking photos and dabbling with publishing articles and even daring to start a book about being diagnosed with my first cancer - lobular breast cancer. Essentially, the story changed. Again. A few months ago in the fall of 2020 I was pondering what to do with with this website and blog. Should I just take it down? Erase these words and memories and images? The voice in these posts - my voice - strikes me as a little naive now. A window into a more carefree time imagining reinventing a life with new possibilities. This blog is essentially a living timeline where I can read my own dreams and goals and watch them evolve. I can follow my own journey from a bike trip through India in 2011 where I was fit and strong and fearless and excited to do more adventures and writing. I read the transition from being diagnosed with breast cancer 6 months later and in treatment for almost a year. I remember clawing back from that illness, determined to reclaim my ability to do everything I had done before and regain what I had lost before cancer ... and Italy was where that happened. I ultimately decided, no. I'm not ready to erase this voice and these memories yet. Though they feel so far removed from who I am today - four years later. Because while my life took a very unexpected turn at the end of 2016 with a second and incurable cancer diagnosis, in many ways it took a turn that doubled-down on the
My latest essay, Behind the Curtain (.pdf) was published in the November 2016 issue of the American Journal of Nursing. The Reflections essay appears each month inside the back cover of AJN, and features previously unpublished personal stories that explore health, health care or nursing. The article is available online, will be included in their print edition, blog and social media. The online article link at ajnonline.com is here. I will make sure my print copies of the American Journal of Nursing magazine are casually yet prominently available for comment and admiration on my coffee table for your next visit.
Another personal essay published February 23 on Curetoday.com. Even though cancer treatment is behind me ... hopefully forever ... I've learned that sharing my story and voicing many of those feelings and fears that cancer patients know is truly helpful for others and healing for me. So I've begun sharing and writing about my treatment based on journal entries that have remained private until now. I watched the warm water rinse away the long hair that clung between my fingers and wrapped around my hands and wrists. I ran my hands through hair and rinsed away the hair again. And again. And again. It was time. My oncology nurse had prepared me for this moment. “I will bet my last paycheck you will lose your hair”, he said. “Make sure you procure protection for your head from the cold and sun.” Which was good advice. Hair turns out to be surprisingly practical. But his advice didn’t touch my worst fears. My hair was soft and fine and honey blonde. Now that beautiful hair would be gone, replaced by the scarves and hats that are a symbol of sickness. My bald head would scream “CANCER” like a neon sign, flashing “Sick person, right here”. Strangers would look at me and see a disease. But I wasn’t a diseased sick person. I was healthy and strong and fit and capable and attractive. At least I was until this breast cancer came out of nowhere. I hated the idea of the world seeing anything else. A request to my friends yielded a cascade of gift certificates and hats and scarves. A trip to the wig shop became an adventure as we tried on dozens of wigs. And as we laughed and experimented it occurred to me that I could become anyone I wanted. Perhaps a platinum blonde Marilyn Monroe? Or sexy
CURE Magazine published my essay: Marathons: Coming to terms with a post-cancer Reality. You can read the published article here. CURE is a magazine most cancer patients come across at some point during their treatment ... They print a physical magazine quarterly and copies are widely available at cancer centers and doctor's offices ... And patients and their loved ones spend a lot of time in waiting rooms reading magazines. Subscriptions are free by signing up online at their website. And they have extensive content online at www.curetoday.com and social media. I'm excited this article was published by CURE because they have such a strong audience of cancer patients, caregivers and families. I hope it will help others avoid my mistakes. The text of the article printed in CURE is below: ---------------------------- Marathons "I'm signing up for a half marathon this spring. Who's with me?" My heart sank as I read this on my young friend's Facebook page ... a friend still in the early stages of breast cancer treatment with months of surgeries, chemotherapy and radiation ahead of her. I recognized this trap. Before breast cancer, I was an amateur athlete ... never the fastest or the strongest but I found joy in testing my physical strength and endurance. I biked across the US and India and completed triathlons and runs. After being diagnosed with cancer in 2011 and enduring a year of surgeries, chemotherapy and radiation, I had set an ambitious goal for the one-year anniversary of the end of my treatment: to bike 10,000 miles over three months in Asia and spectacularly thumb my nose at the cancer that had stopped me cold and left my body broken. And why not? The media and the Internet promote glorious stories of cancer patients completing near-impossible physical feats. And I took this message to heart. I was a survivor.
I sat on the case of Syrah, breathing deeply to slow my racing heart, letting the dizziness pass in the cool silence of the industrial wine storage cooler. Sitting alone in the dark, I finally accepted that no amount of toughness, fight, positive thinking, survival spirit or resiliency was going to give me the prize I sought: to spectacularly defeat cancer. Before breast cancer, I biked across the US and India. Now, after a year of surgeries, chemotherapy and radiation, I set an audacious goal: to bike 10,000 miles over three months in Asia and spectacularly thumb my nose at the cancer that had stopped me cold and left my body broken. And why not? The media and the Internet promote glorious stories of cancer patients completing near-impossible physical feats. And I took this message to heart. I was a survivor. I had beat cancer. If they could do it, I would too. I trained for months, gradually increasing the miles and difficulty of each ride and slowly building strength and stamina. But now, after nearly passing out during a bike ride in front of a rural winery I had to face facts. My hard work, determination and positive attitude were not enough to restore my health or pedal my damaged body back to pre-cancer strength. Consultations with my doctors later - and their warnings to get to the emergency room if anything like that ever happened again - confirmed my fears. I had failed. The months after were the most depressing of my life. In hindsight I realize that trying to do that ride was completely unreasonable ... and probably dangerous. It certainly delayed my true healing, and led to a host of other painful, avoidable medical problems. I had listened to the hype and myth of cancer survival instead of listening to my
Medical oncologists have finally turned their attention to the hundreds of thousands of women who survived their breast cancer. The American Cancer Society and the American Society of Clinical Oncologists released new guidelines to help primary care doctors and oncologists monitor and treat their patients properly after breast cancer treatment ends. At last there is a comprehensive document that provides detailed diagnosis and treatment information for the myriad of side effects breast cancer treatment leaves in its wake. I encourage every breast cancer patient to sit down with these guidelines and a big cup of coffee (you'll need it - they are a dense read) and a highlighter. Then take a copy in with you to your next appointment with your primary care doc or oncologist and ask questions. And if you have a friend struggling with any post-treatment side effects, sending them this document could be invaluable to help them identify and get care they need. When my active breast cancer treatment ended in fall 2012, I transitioned from over 100 medical appointments in a year to being released on my own recognizance with a brand new, completely alien and malfunctioning body. During treatment and for the next two years, side effects from surgery, chemotherapy and radiation kept popping up like the moles that tear up your newly planted lawn. Identifying what was "normal", what was treatable, and what might be a serious - or even a deadly indication of the cancer returning - was a mystery. I Googled symptoms. I trolled online blogs for information. I called my oncology nurses with questions. I spent many hours and a lot of money seeking relief, seeking out physical therapists, massage therapists, acupuncturists and anyone else who might be able to get my post-treatment alien-inhabited body back to something remotely active, pain-free and normal. Many breast
UPDATED January 31 We won second place with Rosie the Riveter - We Can Do It. I'm excited for a fun design with a motivating message ... And I get two free sleeves. Thanks everyone for voting. They changed the design a bit ... You can see the final here. https://www.lymphedivas.com/en/shop/we-can-do-it -------------------------------------------------------------------------- Getting past cancer treatment usually means learning to live with a handful of side-effects treatment leaves in its wake. For me, the hardest side-effect to live with is lymphedema. And I'm sick of the ugly medical-grade garments necessary to control the condition to do what I love - particularly biking. So I partnered with designer extraordinaire Maggie Flynn (who also designed this website) and pro-photographer Mary Lou Harris to create three designs of lymphedema arm sleeves that will be fun and inspiring to wear biking, exercising, in a meeting or on any occasion where something strong and sassy is much more appropriate and something boring and medically necessary. We entered a design contest for a company called LympheDIVAs to design compression sleeves, and the voting for the top three winning sleeves happens between now and November 29: Please Vote Here: LympheDIVA Arm Sleeve Design Contest Survey Wouldn't it be fun to go out and about in Wonder Woman Arms? Or sport a Rosie The Riveter We Can Do It arm when biking to raise money for a cause or running a race? Or don Beautiful Cascade Mountain Arms for that lovely ride in the country side with the Cascade mountains framing the horizon to the East? I think so. And if we win this contest, LympheDIVA's will manufacture the designs, and I - and other women - will get to wear something fun and empowering. So ... please go to that survey and vote to give us some great Bad-Ass arm choices that represent the spirit of getting on with life -
I wrote this post in my personal cancer journal shortly after being diagnosed with breast cancer in October 2011. Today - October 25, 2015 - is my four-year "Cancerversary". Given this week's news about changing mammogram recommendations, which will put even more of the burden on women to make sure they receive appropriate breast cancer screening, I am sharing my diagnosis story more publicly in hopes it helps others help themselves ... and listen to their body ... and get good care. The new mammogram recommendations have stirred up a lot of confusion. To me, the message that matters most is still to stand up for yourself and your health care ... because ultimately you are your best chance of making sure you get the health care you need, regardless of screening protocols. Now, when asked, I tell younger women: Yes, get your mammogram as the default precaution - even though it's imperfect and even though it didn't work for me - unless you and your doctor discuss the pros and cons of delaying and you are comfortable with that decision based on your personal family history and situation. Yes, do your self exam. And most importantly, mammogram or not, be ready to stand up for yourself and fight for good medical care. You are welcome to share this to those who you believe will benefit. Thanks. Protocols in health treatment can guarantee a reasonable standard of care, but they are also formidable barriers. My cancer diagnosis was a wake-up call. Last October I called to schedule my regular mammogram. I felt around on a self-exam (which I rarely did) before going in, and to my surprise found something - a hard round pea-sized knot up near my right armpit. I went in to the breast center for my appointment and told them that I
This post has nothing to do with travel to Africa. Directly, anyway. Though it has everything to do with taking this time to travel with my Mother now. This is a personal journal entry I wrote on a flight back from North Carolina last January about a woman I met, and how she helped me learn a bit more about myself. I wanted to share this personal story after reading a quote from Vice President Joe Biden to Yale graduates after his son's death from cancer the prior day. In the speech, he said, "It's not all that difficult, folks, to be compassionate when you've been the beneficiary of compassion in your lowest moments ... because when you know how much it meant to you, you know how much it mattered," Biden said. "It's not hard to be compassionate." I think he is right. ---------------------------------------------------------------------------------------------------------------------- Compassion “Would you like one”? The young woman next to me on the flight between Raleigh and Philadelphia offers me a one of her Goldfish crackers. She has pulled it out of her bag after she realized that the airlines don't even offer peanuts anymore on a flight, and now she's meditatively putting them in her mouth one at a time. “No, thank you”, I say. I have let my I-pad rest against my lap, and am sitting back in my seat. I'm letting her talk. I'm listening, occasionally offering something in response. But mostly I'm allowing myself to be the kind stranger this woman is so clearly searching for at this moment. Barbara is young. And beautiful with long dark hair and thin sculpted features. She speaks softly, and with an openness and sensitivity that radiates vulnerability. Her Grandmother has just died and she is heading back for the funeral. She talks about her Grandmother’s sudden illness - throat cancer – and her death
Let's Go, Mom!The first time I traveled with my Mom was in the late 90s. We joined a research project in Ecuador and Peru with Earthwatch where we lived in jungle research camp with no running water or electricity. We spent our days tromping around the rainforest catching butterflies and tagging them for a study. It was a life-changing trip that opened my eyes to real travel - with all the great stories that continue to thrive years after in the retelling without any need for embellishment. But mostly that trip opened my eyes to the fact that my mother was not just the mother seen through the eyes of a child. I realized that my Mom had some gumption.In Ecuador we climbed on the roof of the chicken bus when there was no room and it was too hot inside, heeding yells from the front to duck when the power lines or tree branches hung too low. We waded through mud up to our knees in search of elusive plants that fed our butterflies by day, and stood the same pants in the corner after the mud dried overnight. We joined the rest of our Earthwatch group hungrily eyeing the skinny live rooster tied up by the leg in front of the cookhouse - ready for a change from the rice and beans and wondering how much chicken we were going to get from that skinny bird.Before the first Mom trip, I had just ended one phase of my life and was finding my way into the next. After years of work-a-holic tendencies successfully navigating the high-stress yet so self-important political world in Washington, DC, I had fled to the West Coast and different life. And I was diligently perfecting the art of working intensely for a few months