Telling Friends and Family About Your Diagnosis


With a new diagnosis comes fear and uncertainty and a temptation toward denial.The last thing anyone wants to do when they are diagnosed is tell your story over and over to people but it has to be done.  I remember waking up from my biopsy with tears, a painful incision and new hurdles I had to face. I gripped my parent’s hands and listened to the doctor talk. We had many questions about treatment and what like would be like for the next several months. Later that day, my younger brother and sister called me and asked how things were going. I had to go slowly with them because I felt I couldn’t just tell them over the phone how my life had changed. Instead, my family talked it through together in my hospital room when they came to visit. Together, we shared hugs and tears, but also hope. It was difficult to wait to discuss my illness with my siblings. On one hand, it lengthens the period of fear and dread. However, on the other hand, everyone can benefit from the comfort that closeness provides.

 

Telling friend and relatives inevitably involves phone calls. Based on your strength and stamina you may want to decide to do it all at once, as the words seem to flow more freely after the first call. With family, one of my parents would casually ask them how they were doing. Then they would tell them that we had some news, that wasn’t going to be easy to understand. They would always sound optimistic by first telling them that things were going to be all right and that I was doing well. Then they would put the phone on speaker phone so we both could talk.  This way if one of us stumbled or got emotional, the other could take over. We would usually tell them that I would be fine and would hate losing my hair but looked forward to getting a sexy blonde wig. Then my mom would talk and try to arrange a time to see me. Next, we would tell them to make calls to family friends and people that we see less frequently. Everyone wants to hear from the patient directly and really appreciates even a short call. After the first few calls you fall into a pattern down and it isn’t wasn’t so draining. Friends are easier to communicate with given all of today’s social media connections. However, like family, some people you need to talk to on the phone. I knew I would need to tell my boyfriend who I had only started to date 2 weeks ago this way. I called him and told him that I was not doing well but my prognosis was good and to come visit me to talk more. I did the same for a few of my best friends. I told them to come in a group so I could explain my situation fewer times and answer questions so the story was less likely to change by word of mouth. Finally, I got messages and wall posts on Facebook from people reaching out and offering support. One of the great things about social media is that you can give lots of people updates even when you don’t feel like talking. When you do feel like you want to really connect with someone who is not close, try Skype video chatting. It’s the next best thing to being there.

Heather Buchan

Heather Buchan is a two-time Non-Hodgkin’s Lymphoma survivor from New Jersey. Her first diagnosis was at age 16 in 2008. After high school and first semester in college she relapsed in 2010, requiring more treatment and ultimately a bone marrow transplant. After a perfect match transplant from her older sister, her cancer is cured and currently attends Syracuse University in the S.I. Newhouse School of Public Communications.

Episode 256 : Andrew Jenks Thinks Cancer In Young Adults Just Sucks


02/25/13 — Celebrity guest co-host Andrew Jenks (creator, director and executive producer of MTV’s “World of Jenks”) joins us as we tackle the realities of young adult cancer, how it sucks and what you can do to make a difference. We’re thrilled to welcome guests Tambre Leighn (Professional Coach, Founder, Well Beyond Ordinary), Nico Juber (Author, “10 to Thrive”, Founder, Thrive/Survive) plus the insanely inspirational Cristy Norwood and Seporah Raizer in dueling survivor spotlights.

 

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Episode 255 : Spotlight on C4YW, Conference For Young Women Affected by Breast Cancer


02/18/13 — Join us as we profile C4YW, the Conference for Young Women Affected By Cancer, produced by Living Beyond Breast Cancer and the Young Survival Coalition. Stacy Lewis, CHES (YSC Chief Program Officer/Deputy Chief Executive) and Elyse Caplan (LBBC Director of Programs & Partnerships) will be our guests. Also, entrepreneur Jeff Tomczek (freelance Writer and Founder of C2Bseen) in the survivor spotlight.

 

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Episode 254 :: Actress Gabrielle Union + Fertility Rights And Surrogacy Options


02/11/13 — Join us as we welcome activist and award-winning actor Gabrielle Union who will share with us her efforts making a difference as a breast cancer advocate. Then we tackle the hard hitting issue of fertility rights and surrogacy options for young adults affected by cancer with John Weltman, President and Founder of Circle Surrogacy, one of the oldest and largest surrogate agencies around. He will be joined by ovarian cancer survivor Jen Rachman (a recipient surrogate parent) and breast cancer survivor/activist Alice Crisci (Founder, Fertile Future).

 

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Episode 253 : Surviving Chefdom


02/04/13 — Join us tonight as we welcome young adult survivor chef/restauranteurs Eric Levine (Winner, Food Network “Chopped” and proprietor at Morris Tap and Grill in New Jersey) and Hans Rueffert (Author & proprietor at The Woodbridge in NC). Also author Jen Smith (Learning to Live Legendary) in the survivor spotlight.

 

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Episode 251 : cureLauncher & Meals To Heal


01/21/13 — Join us as we welcome the innovators at cureLauncher (Steve Goldner, JD, RAC President & Founder, David Fuehrer, Vice President) along with Dr. Max Wicha, Director, University of Michigan Cancer Center). Advocate spotlight on nutrition expert Susan Bratton, CEO of Meals To Heal, which provides customized fresh meals delivered right to your door.

 

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Episode 250 : Hollywood Health & Society + NY Times Columnist Suleika Jaouad


01/14/13 — Join us as we welcome Sarah Watson, co-executive producer of NBC’s “Parenthood” and Sandra de Castro Buffington, Director of Hollywood, Health & Society, a program at the USC Annenberg Norman Lear Center that provides entertainment industry professionals with accurate and timely information for health storylines authenticity in film and television. Survivor spotlight Suleika Jaouad, young adult survivor of Acute Myeloid Leukemia and author of the NY Times Well Blog column, Life Interrupted.

 

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Love Your Haters & Thrive: How to Move Your Brand Forward Without Alienating Your Base


“Vegas? You’re really going to host a cancer conference in the drinking, gambling and smoking capital of the world?,” a longtime supporter asked me. She wasn’t alone. In fact, many supporters questioned our decision to host last year’s 5th Annual OMG! Cancer Summit in Las Vegas rather than in New York City, where it was held since 2008.

 

It was a risk – a huge risk. But for every risk, there is a reward. On one hand, our decision could have shut down the organization and tarnished our reputation, creating outrage among donors and loyal supporters. But on the other hand was the potential to transform the brand into a real player on the national stage by elevating its profile within the cancer advocacy sector, among young adults and on social media.

 

Indeed, the latter happened. Sure there were naysayers and some people did ultimately turn their backs on the organization, but a new era was born for the young adult cancer movement. Since that time, the brand has increased its mailing list and support community by 25 times, improved its monthly social media reach by 2500% and fostered numerous new financial revenue streams that help us boost our patient services, community outreach, and educational programs to survivors, caregivers and providers.

 

It was not a decision I came to easily. As CEO, I recognize “you can’t make an omelet without breaking some eggs,” but I certainly feel remorse over the loss of loyal supporters who had been there since the early stages of trying to get all of this off the ground; a time when many mistakes were made because there was no road map to follow. It’s a difficult leadership challenge many nonprofit founders and leaders face: How do you move your organization in a direction you feel is right, knowing it may have a negative impact on early adopters? Can we simply decide, as poet John Lydgate wrote, “You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time?”

 

Judith Sharken Simon gives us some answers in her book, Five Life Stages of Nonprofit Organizations. She says all nonprofit organizations evolve through five development cycles, each of which marks a milestone in mission strength, creative vision, social impact, brand loyalty and public trust: (1) Imagine and Inspire, (2) Found and Fame, (3) Ground and Grow, (4) Produce and Sustain and (5) Review and Renew.

 

As Stupid Cancer heads into its 6th year as a foundation and prepares for the 6th Annual OMG! Cancer Summit (yes, in Las Vegas), I have been reflecting on these stages and how far the organization has come. Yet we still have a long way to go as we are just barely making the transition from Found and Fame to Ground and Grow. Our next five years are about sustainability, viability and longevity.

 

I see this next chapter of growth as a period where passion meets pragmatism and momentum matures into innovative productivity. It will bring major changes to the core systems and processes that our early adopters and supporters of the brand have come to depend on. But this can only happen if we remain as honest, forthright, transparent and accountable as ever to our core constituencies because these are the friends, fans, followers, fundraisers and volunteers who helped to build the organization from the start.

 

A key component of healthy growth for any nonprofit is also developing strategic partnerships with major corporations, while at the same time staying grounded with core audiences who value grassroots efforts. For example, Stupid Cancer first partnered with pharmaceutical companies and today our partners include major household brands. We also engage in grassroots advocacy, but it is the business relationships that can help propel a maturing nonprofit to that next stage, ensuring it has the financial security and stability to increase staff, expand programs and reinvest capital internally to build office space or implement new technology.

 

As nonprofits, we seek a diversified and balanced portfolio, so that if one revenue stream should wane, the others are strong enough to pick up the slack. But we must be careful from whom and where we might accept corporate contributions as we were reminded after the public outrage caused by Susan G. Komen For The Cure and Planned Parenthood. Likewise, corporate contributions can fetter out on a whim due to unforeseen circumstances like scandal and free market impulses (think Enron, Worldcom, Tyco, Lehman Brothers, GM and Chrysler).

 

As I see the nonprofit I founded emerge from adolescence into young adulthood, I continue to wrestle with these difficult decisions and the cautionary tales of others who have walked this path. But when I welcome so many new – and old – supporters into our global support community, going forward, I will proudly share my vision for our future. It is a future that does not ignore our past. Yes, our brand has evolved, but we know where we came from, and Stupid Cancer’s mission-focused and brand passionate agenda will only continue to grow.

 

The one thing that people can depend on is how the mission that first launched in 2007 has never veered off course, nor has the charter, the vision or the promise to change the world “one chemo infusion at a time.” And so I shall conclude this essay with the reposting of our manifesto:

 

Within the young adult cancer community, we hold no one’s disease above anyone else’s. It is not a contest and it is not about body parts. The playing field is leveled when you are just trying to live your life as a young adult and stupid cancer comes along. There are no “good” cancers. Benign tumors can be just as devastating as malignant ones. The burden of issues like isolation, fear, relationships, fertility, parenting, caregiving, careers and insurance are equally shared. We have the right to survive with dignity and quality. We deserve to be treated age-appropriately. Cancer survivorship is an art; and the art of your survivorship is how you choose to get busy living. This is who we are. We are one community. We are hundreds of thousands strong. We are changing the rules.We are Stupid Cancer!

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

Food Fight: Speeding the Healing with Whole Foods


By Robin Foroutan, MS, RD, HHC

 

Stupid cancer!  Both the cancer and the treatment can rough on your body, but making the right food choices during and after treatment can strengthen you from the inside out, making all the difference.

 

The goal? To nourish and fortify your body, avoid the stuff that weakens the immune system, all while making sure the food is tasty (even when your taste buds get wonky).  In practical terms… Move towards a whole foods-based diet and find what works for you!  The first step is to start reading every ingredient list to make sure that the foods you eat are really made of… actual food!  Dump artificial ingredients, especially artificial sweeteners and preservatives, many of which are linked to cancer, and find some go-to pantry staples with “clean” ingredients. A good rule of thumb is to ask yourself if you recognize each of the ingredients as real food, or do they sound more like a weird science experiment.

 

Once you get that down, be sure to clue in the people in your support circle, so they know to show up with foods that heal.  For my own clients affected by cancer, I recommend the cookbooks “The Cancer Fighting Kitchen” and “One Bite at a Time” by Rebecca Katz for tons of delicious and super nutritious recipes that boost the immune system, as well as tips and recipes for treatment-specific symptoms, like dry mouth and nausea.  A must have!

 

You’re too young and fabulous to eat junk that can keep you from radiant health, so here are my three main “Golden Rules” of healing with whole foods:

 

Golden Rule #1: Put Good Things In/Keep Bad Stuff OutDump processed foods, sugar, artificial sweeteners, colors and preservatives as best you can, since these things stress the body.  Yes, cakes, cookies and muffins do taste good, but they weak the immune system, and a strong immune system is everything! Veg Out! Eat tons of non-starchy and brightly colored veggies, especially those in the cruciferous vegetable family – broccoli, cabbage, cauliflower, brussel sprouts, kale, and watercress, all of which are potent cancer fighters.  Leafy greens, winter squash, and other brightly colored vegetables are great choices too – be sure to eat some of these “super” veggies daily.  Cooked veggies are easier to digest than raw, so you may opt for steamed, lightly sautéed or roasted veggies. Buy organic if possible, or refer to the Environmental Working Group’s “Dirty Dozen and Clean 15” list for information on which fruits and veggies have the highest and lowest pesticide residues. Reduce or cut out dairy foods. If you do eat eggs, poultry, beef or other animal foods, be sure they’re organic.

 

Conventionally raised animals are exposed to more synthetic hormones and toxins, so it’s best to steer clear and choose organic, free-range poultry and eggs, and organic grass-fed beef.Healthy fats are important in keeping cell membranes fluid and strong.  Avocados, seeds and nuts – particularly walnuts, pine nuts and Brazil nuts – contain super healthy fats, as do “fatty” fish.  Be sure that the fish you select are low contaminant fish, usually smaller in size and lower on the food chain, like anchovies, sardines, wild salmon and black cod.  Ask your healthcare provider before supplementing with essential fatty acids, like omega-3s.

 

Golden Rule #2: Eat To Boost Your Immune System, Your Inner WarriorGreen and black tea fight inflammation and can boost the immune system, so brew yourself a nice cup and enjoy.  Drinking tea on an empty stomach can make some people nauseous, so enjoy that cuppa with meals or snacks if you’re struggling with nausea.Turmeric is a bright yellow spice with incredible healing properties, which gets a boost when used in combination with black pepper.  For yum factor, try combining it with cumin and cinnamon.  Many herbs, like oregano, chives and garlic, provide health benefits, so season away!  Herbs and spices are especially helpful in making food more appealing when your appetite wanes, and fresh ginger is great for reducing nausea.Cruciferous veggies pack a nutritional punch, and they also help your body detoxify properly, which helps the immune system.  The same goes for berries, (organic) citrus zest, pomegranate, and dark leafy greens.

 

Golden Rule #3: Protect Your Gut – That’s Where Most of Our Immune System LivesEliminate constipation! It’s important to have daily bowel movements, so be sure to eat enough fiber and drink plenty of water. Great sources of fiber include brown rice, vegetables, berries, apples, steel cut oats, beans, lentils and nuts.  Add flax seed or chia seeds, if necessary to stay regular.Friendly flora! Cancer treatments take a toll on the good bacteria that lives in the gut and that can weaken your immune system.  Talk to your healthcare provider about using a high quality, high potency probiotic (good bacteria) supplement.  This can reduce inflammation, boost your immune system, and protect you from treatment-related tummy troubles.

 

After you beat that stupid cancer, find yourself a great registered dietitian or certified nutritionist specializing in Integrative Medicine who can help you rebuild your digestive tract, detoxify and strengthen your entire body, so you can stay healthy and cancer-free for life.  Check out www.IntegrativeRD.com to find an expert in your area.

 

Robin Foroutan, MS, RD, HHC is an Integrative Medicine Nutritionist, registered dietitian, writer and health coach with private practices in New York City and Morristown, NJ.  She is also a blogger with Good Greens, a gluten-free protein bar. Click here for more information on healing with whole foods.

 

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

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