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Marathons … The Post-Cancer Body

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.

Cancer Moonshot can change our Cancer Conversation

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

What Makes an Image Memorable?

A friend recently sent me a Washington Post Article about a study out where scientists test images for Memorability. Take a look at these four photographs I took in Africa last spring and rank them according to which photo you believe is most "Memorable".  As in, "The viewer likely to remember the image 100 seconds after they first saw the image.           Ready for the Results?  I was surprised ...   I love all of these photos.  But my favorite image of the entire travels to Africa - the Girl in Pink - ranked the lowest on memorability.  A mere 46.5% of you, the the viewers, will remember this photo for more than 100 seconds. The most memorable photo of this group is the Flamingo ... ranked high as very memorable with 81% memorability beyond 100 seconds.  BeeEater follows with 75% and Dunes of Namibia with 66%, a mediocre medium. Much of the basis of this study boils down to what graphic designers and professional photographers already know about photo composition and color of an image.  They earn their living choosing the images and designing the graphics that please the eye and successfully sell their wares ... they want you to remember their image from the advertisement you saw when you are out shopping for your next pair of shoes. Where the study falls short, though, is in measuring the intangible.  To me, a memorable image awakens emotions.  Or shows an unrecognized truth.  Or prompts re-living a memory.  Or peaks curiosity and a desire to learn more about a person or a place. To me, the little girl in her white dress and bright pink coat slowly sauntering barefoot along the boardwalk - lost in her own world and thoughts and framed by the mountains of South Africa's Southern Cape - evokes my curiosity and stirs my imagination more than a picture-perfect image of a beautifully posed and

New Guidelines are a Big step forward for Breast Cancer Post-Treatment Care

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

I’d like some Bad-Ass Arms, please

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 -

Surviving Breast Cancer Protocols

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

Vino-culture

The smell roasting pork had me looking longingly back over my shoulder at the grill with a gutted piglet spinning over the coals, lovingly basted by a man who clearly took his pig very seriously. At my near-wrecking of the bike as I smiled and waved, the little group gathered around the spit waived me down and beckoned us over.   We just smiled ourselves into something special. We were riding west into Mikulov, a small town in the center of Moravian wine country. I was bored ... the Greenways trail we had been following had spent too many miles on the barren trail through the border no-man's land. The communist government had cleared everything along this strip so they could patrol and shoot whatever moved without obstruction. And they had done such a thorough job I had lost interest in the ride beyond marveling at the difference between the cultural desert we traveled and the rest of this rich country that had amazed. So I led us off the trail onto a little detour into a small town seeking something a little more interesting. Seek and you shall find. As we rode past a little wine cellar road outside of the village my nose let me to roast pig and a wine-making party.   Crates of white reisling and purple cabernet grapes picked that morning waited in a trailer across the road. The cellar buzzed with a family busily shoveling grapes and juice that had just been crushed into a barrel with a screw lid to squish out the last of the juice. A young boy used a strainer to take out debris. A man with a garden hose syphoned the juice into a larger bucket into the lower level of the brick cellar. The walls of the lower cellar are gunky with white mildew and mold.

Sentinels

 Look!  Another castle! Look!  Another bunker! The past three days we cycled from the Western Czech Republic in Bohemia to the East Moravian town of Mikulov, closely following bike routes along the Austrian border. The remnants of centuries of conflict as kings and countries and religions fought and defended this land are strewn everywhere. They are mounted on hilltops like sentinels to command the view and the fortified advantage. They are built to impose power just by their size, as well as to defend if attacked. They are deliberately conspicuous, and scream STOP! To both keep out enemies coming from outside. And later, to keep their own people behind the barriers.  By the third day of riding near the border, the bunkers and castles and look-out towers had become so commonplace they barely warranted a mention as we pedaled east.  Before history and international committees designated this line as the current border between the Czech Republic and Austria, this region was the boundary between the kingdoms of Bohemia, Moravia and Austria. Today castles stand guard at the old borders, built and expanded and renovated as they changed hands as the ruling families intermarried and then died off over the centuries. Each generation building their new fortifications and palaces to mark their territories. And rule their serfs. Collect their taxes. And defend what their entitlement. This borderland was also central in the early efforts to challenge the Catholic Church when the Hussites broke from the church with their own vision of religion, forming an army that eventually disintegrated into basic looting and marauding. They sacked towns in the region in the name of God and wealth. Earlier this week we saw a painting of a beautiful chateau surrounded by elaborate gardens displayed over a mantle at the massive castle at Cesky Krumlov. We asked the guide the location, and

Heritage

"I learned English because when I was young I was infatuated with Jon Bon Jovi." We have stopped in the small village of Kojakovice on our 50 mile bike between Cesky Krumlov and the Bohemian town of Trebon to the east. After steep hills and miles of rocky dirt roads and grass paths as we cut our way east, we were ready for a break. Stephanie (as she explained was the English version of her name), greeted us as we pulled up to the Czech Immigration Museum in this tiny village with a warm smile and a welcome offer of coffee. "How did you hear about this place? Do you have Czech relatives?" I explained that I had found a website with very helpful explanations about this area, and we had detoured here to visit in person. She took us inside an old building filled with an assortment of tools, kitchen gadgets, and cardboard wall displays. And, as we admired some of the finely decorated gingerbread for sale along with packaged cookies meant to feed hungry cyclists who ventured through this town as part of the extensive bike trail networks surrounding the town of Trebon, she invited us to see her workshop. Stephanie makes this local gingerbread art, and like learning English, this is also self-taught. A tiny bag of icing and a needle is all she needs to trace intricate designs on gingerbread hearts and hedgehogs and pumpkins and other creations. She tells us that she has been invited to sell her gingerbread at a local fall fair, and so she is making her inventory to be ready. Last time she sold out in two hours. She can sell them for a decent profit ... they are prized as gifts and can last four years. I tell her how honored I would be

Living Through Normal

When I was very young, I believed that Olympians from the Soviet Union or Soviet block states would be punished if they failed to win a medal. This was the late 60s and 70s. Back then, I would still play in the occasional bomb shelter dug in the occasional family backyard. I remember nuclear attack drills in grade school. The news was full of disarmament talks and Soviet military aggression and nuclear war and communist threats spreading around the world. For many Americans during the Cold War, the televised Olympic games offered one of the few glimpses behind the Iron Curtain. And this made the Olympics mean much more than a simple athletic competition. It seemed that the entire superiority of nations, culture and values hinged on whether the Soviet Block countries beat the US and Western countries in these games. And my child's logic reasoned that with so much at stake for civilization as we knew, it must be especially bad for communist state athletes if they lost. Because surely those scary, militant authorities behind the iron curtain would be looming and punish anyone who did not win and bring glory to their country. I truly had no idea what life was like behind the Wall. I suspect very few Americans then understood more than we were led to believe. Forty years later, as I travel behind the Iron Curtain for the first time to the former Soviet Satellite state of the Czech Republic, I'm slowly catching glimpses of a history and the upheaval that people survived in the last century. We are in the town of Cesky Krumlov, deep in Bohemia near the Austrian and German border. This town is a Unesco World Heritage Site ... dominated by a massive castle and preserved as it was in the 15th century. Truly beautiful. Truly

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