Cure is a Four Letter Word

last_great_act_of_defiance

by Belle Piazza

I always know that my scan is bad when my oncologist comes into the exam room, grabs his chair, and gets right down to business. If the scan was good he’d come into the room, shake my hand and instead of talking about the scan, he’d ask me how I’m doing and talk to me like an old friend rather than a cancer patient getting their scan results. Eventually he gets to the scan, which I’ve usually forgotten about by then, knowing the news is good.

My last scan was not good. A new spot on my lung plus two lymph nodes in my chest that hadn’t lit up in over two years were glowing again. Not good. I’m finally having to confront my reality, which is that “cure” is pretty much off the table and “more time” is my best hope. It’s a lot to get my head around. My husband wants to know “how long” but I won’t let him ask the oncologist this question. It’s just too morbid – I won’t go there.

So once again, it’s time to regroup, pull out my toolbox and take inventory. I need all the tools I can to deal with this latest development. Friends tell me “if you want to talk, just let me know, I’m here for you”. And as much as I appreciate this, there just doesn’t seem to be a lot to talk about. I can tell by the way a person says these words whether they’re really prepared to hear what I have to say or if they just say it because they don’t know what else to say. And really, what is there to say? “Wow – it sucks to be you….” – that about sums it up. My Colon Club friends rally behind me, as they have always done. They are my safety net, my security blanket. When times are darkest, I know they will always shine a light for me.

When Gaelen was near the end of her life, I noticed a marked increase in her anger and frustration levels. I was surprised to feel both of these feelings rage inside me these past weeks. I’m not an angry person by nature, but suddenly I felt both anger and frustration – with the disease, with society, with researchers who don’t talk to each other and share information, with doctors who don’t have all the answers. Anger that it doesn’t matter what you eat, what you juice, what treatments you receive, how positive your attitude or how much you pray – in the end, if cancer decides to take you – you’re outta here! Katie Couric recently stated on her show something to the effect of “the cemeteries are filled with people full of hope and positive attitudes”. Amen to that. It doesn’t matter whether you’re young, old, man, woman, husband, wife, mother or father. Cancer doesn’t care if you’re black or white; Christian, Muslim or Atheist. Cancer doesn’t care if you’re a good person or a worthless bum. Bottom line – cancer – doesn’t – care.

I get a second and third opinion, both of which offer me nothing more than my current oncologist can offer me. More chemo. And no more “chemo lite” as I call it, but the really nasty stuff that makes me sick as a dog. Since I’m considered terminal now, my oncologist will prescribe medical marijuana if I want to try it for the nausea. Great, I think, I’ve been dying to try that stuff.

I remember the advice I’ve given others. If one day at a time is too much to handle, then take it one hour at a time, or one minute, or one second. Break things down into smaller pieces that are easier to manage. Breathe in, breathe out. I use my anger to fuel my presentations to our State Senators and Representatives in Washington D.C. during Call on Congress. Suddenly my message seems so clear, so blatantly obvious. You either catch cancer early and prevent it – or catch it late and spend millions of dollars on a patient just so they can have a few precious years left before the disease takes them down.

I’m tired and I’m scared. I’m really, really scared. They say there are no atheists in foxholes. When hope is a rare commodity, we tend to find religion. I don’t pray for a miracle or a cure, though I’d take either one if there’s an extra to spare. What I pray for is strength. Strength to handle whatever path is before me. Strength to not let all this completely paralyze me with fear. Strength to continue speaking out about this disease and how easily it can be prevented to anyone who will listen until I have no breath left. Strength to continue living and loving my life, my friends and my family for as long as I possibly can. ‘Cure’ is indeed a four letter word and so is ‘fear’. But so are ‘hope’ and ‘love’. I’ll try hard to focus my mind on the latter.

Call on Congress 2013 – It’s Never Really “Over”

Rachel and Belle

by Belle Piazza

Late Wednesday evening, surrounded by fellow advocates on the crowded dance floor – Rodrick Samuels, our charismatic and inspirational speaker for training, conga line leader and for the moment our D.J., shouted out over the music, “Take the “L” out of “Lover”, cause this party is “OVER!”. Over. I can’t believe it’s over and time to say our final good byes to people who are as close to me as my own family, more so in some ways. Doug gives me a hug so strong and so long that tells me what he won’t say in words. It says “we’ve lost too many already, we don’t want to lose you too”. But instead he tells me he is there for me. To call him any time. To let him know how things are going – good or bad, he is there for me; he cares. And I know that more sincere words have never been spoken.

I say my good-byes to Rose and her husband Eric. I try to thank her for all she has done for my family individually and the colorectal cancer community collectively, but Rose will have none of it. She tries to redirect the conversation so that it reflects back on how much she gets out of it all. And I know she does. But she gives back one hundred times more than she gets – it’s just who she is and why she and her husband were recognized as “Advocates of the Year 2013” by Fight Colorectal Cancer and why they received not just the award but a standing ovation, cheers and whistles from the crowd when the award was presented to them earlier this evening during the celebration dinner by their friend and 2012 Advocate of the Year, Pam Seijo.

My kids have waited all year for this party. Michael has been brushing up on his dance moves and Amber carefully thought out her blue wardrobe and accessories. Together Rose and Amber choreographed “The Colorectal Cancer Boogie” and taught it on the dance floor to all the kids. The largest Call on Congress to date, there were many more children this year than last, when Michael and Amber were the only ones there. And it worked on many levels. Parents are introducing their children to the legislative progress. Legislators are taking note of little people who aren’t often in meetings such as these but just at the Capital on school tours or family vacations. And as a community, we are preparing the next generation of advocates.

Last year I knew maybe two people at Call on Congress. This year, walking in the doors, I knew half the room, which numbered well over a hundred, including 88 advocates from all over the country. The Colon Club was extremely well represented with 7 current and former Colondar Models in attendance, along with The Colon Club President, Krista Waller and close to a dozen additional club members. The 2013 Colondar was distributed to many legislators during our meetings on Capital Hill.

As I looked around the room it felt like a family reunion. Random people, many of whom I met for the first time this year. But here, we’re family. We joined together to represent all those who are fighting this disease, those who have been lost to this disease and those who have it, or will have it – and don’t even realize it yet. There were two young sisters from Florida, who just lost their mother last month. Bill, whose wife attended with him last year, but lost her battle in the fall after 47 years of marriage. The “Fabulous Baker Sisters” from Portland, who lost their father 5 years ago to colorectal cancer after doctors repeatedly misdiagnosed his symptoms. And of course my dear friend Doug, who lost his best friend to this disease in 2007, just four months after being diagnosed. In normal every day life we might not even notice each other as we pass on the street, but in this room, at this event, we were one. One Million Strong.

A day and a half of intensive training and workshops culminated in our Wednesday meetings on Capital Hill with our Senators and Representatives. I brought stories, Colondar’s and arguments as to why I believe Congress should support funding for screening, awareness and research for colorectal cancer. I spoke from the heart with passion and determination. Did I make a difference individually? Did we make a difference collectively? I choose to believe yes on both counts. We have to believe. We have to have faith in ourselves, in each other, in our cause. Yes, we are living in difficult financial times. We have a congress that hasn’t learned the lessons on sharing and compromise that most 2 year olds have mastered. But when we toured the monuments earlier in the week and I walked through the Franklin Delano Roosevelt Memorial, The Martin Luther King Memorial and others, these were powerful reminders that we have been through hard times before. The great depression. World War’s I & II, The Korean War, The Vietnam War. Our struggles with segregation and all that entailed. We have persevered before and we will persevere again.

As we piled into our cab for the short drive back to our hotel, the cab driver asked me what the party was all about. “I’m glad you asked” I responded, and told him about Call on Congress. “Now let me ask you, are you current on your colonoscopy screenings?” – and yes, he was. And this is how it happens. One person at a time – we can and we will, change the world. I have faith. And in the words of the great Martin Luther King Jr., “I Have a Dream…..” And I do as well. We can and we will, beat colorectal cancer. Perhaps not today and perhaps not in my lifetime, but we will beat this disease. And someday, it will be as little known in this world as Small Pox or Polio. We all have to have faith but we also must work to achieve our goals. Individually we are one; but collectively, we are One Million Strong in the fight against Colorectal Cancer! Join me, join others, join “One Million Strong!”

Giving Cancer its Due……..NOT!

You never know how strong you are...

by Belle Piazza

Giving Cancer it’s Due…….NOT!!!!!

In my last blog, which I called “Surviving the Day”, I almost didn’t publish it because I thought it was so depressing that no one would want to read it. But I did publish it and I got some wonderful feedback from those who read it (thank you all so much!). But I really hate to be a Debbie Downer. I thought I should write a follow up blog to offset how depressing the last one was. Yin-Yang and all that good stuff. I’d certainly have plenty to write about. After all, these past five years, as difficult and challenging as they have been, have not been all bad.

To mention just a few of the highlights, I was blessed to have been selected as a 2012 Colondar Model. I participated in Fight Colorectal Cancer’s 2012 Call on Congress and have tickets to attend again this year, along with my two kids and one of my BFF’s. I participated in the filming of a Public Service Announcement for Fight Colorectal Cancer. Every week I get to write my “Survivor Sunday” post on the FaceBook page for “Get Your Rear in Gear” and I’m considering sponsoring a GYRIG 5K run in our community later this year. Not knowing how long I have to live has motivated my family to travel to places we might have otherwise postponed – Hawaii, Orlando, Cape Cod, Napa Valley, D.C. and so many more. I’ve made many new friends from all over the country – some of whom I’ve had the honor of meeting in person either locally or through my various travels.

I could write about the outpouring of love and support I have received from doctors, nurses, friends, neighbors and even total strangers. I could write about how much I appreciate the simple things in life and the joy in each and every day I am blessed to have with my family – not knowing from one scan to the next when the other shoe will fall and everything will come to a crashing end. I could write about strength, fears, perseverance, determination, faith and love.

And I’ve tried. I’ve tried so many times to write such a blog but it just won’t come. Because CANCER has NOT made my life better. I know it’s taboo to utter such heresy, but it’s true. My life has ALWAYS been challenging, difficult, exciting and rewarding. I don’t think you can have one of those dynamics without having them all. Cancer has caused me to shift gears but it hasn’t given me some sort of divine gift, inspiration or “ah-ha moment” that I haven’t previously experienced or wouldn’t have otherwise.

That’s right – I’ll say it – I am not a better person because of cancer. The simple truth is that I am in control of my life; not cancer. Cancer is nothing more than a disease. A terrible, awful, horrible disease that comes with horrific treatment options. Cancer has caused me to pursue different paths than I might have otherwise. It has led me to different experiences, to meet different people, to pursue different passions. Yet I refuse to be defined by my cancer or to give it credit for ANYTHING that I have accomplished. I have done what I’ve done in spite of cancer, not because of it.

I’ve met a number of people who claim they are grateful for their disease and that because of it they are better people. I take them at their word, not having walked in their shoes. But I’ve put plenty of miles in my own shoes and I have never viewed cancer as a blessing. I may sound bitter and although I’m sure a part of me still harbors some resentment towards cancer; for the most part I’ve gotten past that.

My life has changed because of cancer in ways I didn’t expect or imagine. But it’s been my choice to determine my path – to live life to its fullest, as I’ve always done. I refuse to role over and accept cancer as my ultimate defeat and demise – at least not just yet. As with most things, there has been much compromise. I’ve learned that I have less control over certain aspects of my life than I’d like to admit. I’ve learned how to better manage my time and energy and to recruit help when I need it. Still, for however many days I have left, I will live my life in a way that I see fit – always conscious of the compromises that must be made and the inevitable changes required of my best made plans.

I have cancer and cancer is a big part of my life. Cancer has influenced my choices, but it does not completely control them – at least not yet. Go ahead cancer, keep throwing me lemons. I’ll keep making lemonade. I’ll keep looking at my glass as half full until it’s completely empty. And even then, will I give credit to cancer for the amazing life I look back on? Hell no. I’ll look back on all the great times I had, all the great people I met, the great places I got to visit and all the amazing life experiences – and give credit where credit is due. To me, my family and my friends who made it all possible. Sorry cancer, I give you no credit – no due. I will never write about how cancer has enriched or blessed my life. That is SO not going to happen. Cancer is a terrible disease. Nothing more, nothing less. It influences my choices, but it does not completely control them. Not just yet anyway. Cancer hasn’t made me any more of a warrior or survivor than I’ve always been. I never chose to have cancer. But I can choose how to live with cancer.

COLON CANCER CHALLENGE FOUNDATION New York Colon Cancer Challenge – April 7, 2013

Sanjay-colon-cancer-challenge-foundation
By Belle Piazza

When I first joined The Colon Club in 2008, one of the first things I did was order myself a copy of the The Colondar. I’ve had a current Colondar hanging on my kitchen wall ever since.

The Colondar is one of the main ways the The Colon Club spreads awareness and education of colorectal cancer to everyone who sees it, as well as hope and inspiration for those of us fighting the disease.

Publishing The Colondar takes a tremendous commitment from a devout group of volunteers and it also takes funding. Without the help from our sponsors, The Colondar would not be possible.

Beginning with our January 2013 sponsor, the “Colon Cancer Challenge Foundation,” each month our blog will highlight one of the 2013 sponsors.

About Colon Cancer Challenge Foundation

Mr. November 2013, Sanjay Bery, is not only a Colondar model, but he is a Board Member for the “Colon Cancer Challenge Foundation.”

The foundation was established in 2008 by Dr. Thomas K. Weber, Professor of Surgery at the State University of New York at Downstate and Chief of Surgery at the Dept. of Veterans Affairs, NY.

The foundation is “Dedicated to a World Without Colorectal Cancer.” Its mission includes:

  • raising awareness of colorectal cancer
  • the importance of screening colonoscopys
  • educating the public about the risk factors and symptoms of the disease
  • supporting research

Sanjay was first made aware of this organization when he and his family participated in their signature event – the annual New York Colon Cancer Challenge in 2009. This year, 2013 marks the 10th anniversary of this event which will take place on April 7, 2013. The Challenge offers options of a 1.7 mile walk, a 4 mile run or a 15 mile run all in beautiful Central Park, New York City.

Funds raised by Colon Cancer Challenge Foundation

Funds from the event go to – you guessed it – a world without colorectal cancer! Here are some of the ways the foundation uses their funds:

• Free educational materials and events in communities around the country
• A national tour of our educational inflatable colon – Rollin’ Colon
• Prevention Programs in New York City including colonoscopy screening efforts for the uninsured and underserved
• Funding to support colorectal research at leading institutions
• Awards to young colorectal cancer investigators presenting at the world’s premier colorectal cancer societies.

Learn more about Colon Cancer Challenge Foundation

You can learn more about The Colon Cancer Challenge Foundation online.

Get details on how to register for The NYC Colon Cancer Challenge on April 7th

Get updates by following or “liking” their Facebook page.

Sanjay will be running again this year, with many of his friends and family. If you’re interested in joining HIS team, click here!
We hope that many of you will be able to participate as well and help support this wonderful organization!

Media Alert: Young colon cancer survivors available for interviews during March’s colon cancer awareness

KANSAS CITY, Mo. – Feb. 14, 2013 – March is colon cancer awareness month – a time when stories featuring “butts and guts” become appropriate for the nightly newscast. The Colon Club has a database of young colorectal cancer survivors from across the U.S. available for interviews and willing to share their stories. To set up an interview with a nearby colon cancer survivor, please email Danielle@semicoloncomm.com or call (816) 729-7760.

Why feature colon cancer in young adults?

meaghan-volk-1-colon-cancerTraditionally, colon cancer is seen as an “old person” disease. Screening is recommended starting at age 50, or age 45 for African Americans. Although occurrence rates of colon cancer are down, studies are showing that incidence among young adult patients is on the rise. (See article by Dana-Farber Cancer Institute and statistics by The Colon Cancer Alliance.)

Featuring a young colorectal cancer survivor’s story can:

  • Shock audiences – the survivors do not LOOK like typical colorectal cancer patients.
  • Draw attention – young survivors often have large groups of supporters that share stories featuring them through traditional and social outlets.
  • Hit home the message – individuals understand the importance of screening and detection through young survivor stories (if it happened to them, it can happen to me.)

To locate a nearby survivor who can provide comment for a March colon cancer awareness piece, please contact Danielle Ripley-Burgess at (816) 729-7760.

About the Colon Club

The Colon Club is a New York State nonprofit founded in 2003 by two women impacted by colon cancer before age 30. The Colon Club serves to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways and to encourage people to be screened when it’s appropriate for them. The Colon Club is the manager of The Colossal Colon (ColossalColon.com) and producer of The Colondar, a yearly calendar featuring men and women diagnosed with colorectal cancer under age 50. (Colondar.com) Please visit ColonClub.com for more information.

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Download a PDF of this press release

I CAN-CER VIVE

Surviving The Day

by Belle Piazza

I hear the dogs nails clicking down the tile hallway and I know it’s time to rise and shine; wake the kids and start my day. Before entering the shower, the colostomy bag comes off and is disposed of in an old Ziploc bag, which contains the smell amazingly well. Some shower with the bag on but I like to go commando – it’s the 15 minutes a day when I don’t have to wear the bag and I cherish that time; short as it may be. I lather up the medicated shampoo on my head and face to deal with the acne rash caused by the Erbitux infusion I receive weekly at the cancer center.

After showering I apply a medicated lotion to my face and then Vaseline all around my eyes to help moisturize my skin that gets so dried out by the medicated shampoo. There’s estrogen cream to be applied topically inside my vagina – and theoretically 15 minutes daily devoted to vaginal dilators. I call this “vagina rehab” necessitated by radiation and the resulting early menopause which has caused the skin in my girl parts area to become paper thin and dry. But I’m lucky, since for some odd reason the hot flashes and other menopause symptoms have largely passed me by. And as brutal as radiation was, for many the long term effects are much worse than what I experience. I slap on a fresh colostomy bag in record time. A fresh colostomy bag – kind of an oxymoron isn’t it?

A view of my upper body in the mirror reveals a host of scars. There was the VATS lung surgery, my former ileostomy, a few ‘test’ cuts from placing my colostomy, 2 hernia repair surgeries, 3 port surgeries and of course my long vertical scar from my belly button to bikini line from my original surgery. And to round it all out my c-section scar. The doctors tell me that my semi regular small intestine blockages that land me in the ER and sometimes a night or two in ‘da big house’ are likely caused by the scar tissue from all my surgeries. Too bad my abs aren’t as rock solid as all that scar tissue.

I slather Bag Balm on my feet and thumbs, around the tips of my nails to moisturize them and help prevent the cracking and bleeding the Xeloda causes. I wrap my thumbs in band aids for a little more protection. There’s not much to deal with as far as my hair, since I shaved my head last summer after losing so much hair while on Irinotecan. The Erbitux I’m currently taking causes lots of hair to grow back in – and not just on top of my head. Sure, it’s growing back on the top of my head, but also my eyelashes, eyebrows, all over my face and yes, even in my nose. On the up side, I have the eye lashes of a 15 year old. On the down side I have the eye brows and nose hair of Andy Rooney. At least the facial hair covering my cheeks and sides of my face is light blonde, so I don’t look like the Wolfman. I feel like I’m pruning an overgrown bush with all the plucking and trimming of facial hair I have to manage.

With breakfast I grab a handful of supplements prescribed by my Nutritionist to help support my body while I’m on chemo; which will be for the rest of my life. I also take my pink Xeloda pills, which will be followed shortly by a Compazine to help calm the nausea that the chemo brings. I take a Doxycycline to help manage the Erbitux rash. I grab the soy milk from the refrigerator for my coffee – having given up dairy several years ago in an attempt to get better control of my bowel problems. It helped, but not enough, which is why I ended up with a permanent colostomy. I decided to stick with the soy anyway, it’s pretty tasty. After breakfast I clean up the dishes with rubber gloves on – reminiscent of a 1950’s dishwashing soap commercial to further protect my skin from the hand/foot syndrome.

I carefully plan my days to ration what little energy I have. A great explanation of how little energy a chemo patient has is the “Spoon Theory” by Christine Miserandino (just Google it). I check and double check my calendar as with the chemo brain that continually fogs my mind I have frequent memory issues, especially when it comes to dates and times which I frequently get mixed up. Any errands and/or visits are carefully planned to ensure there is always a clean multi stall bathroom and and not one of those one stall wonders. At least in a multi stall bathroom there’s some mystery as who just bombed the place when I have to empty my bag in there. Colostomy supplies and a change of clothes are always in my car. A walk would be nice, but I can’t walk too far or too frequently due to the cracking and pain it causes my feet.

Evening brings a light dinner since by this time I’m tired and the nausea has returned. I choke down another handful of supplements and more Xeloda. Another application of Bag Balm goes on my feet and hands. There’s an ache in my back and I wonder if its bone mets or if I just need to see my chiropractor. I stay up late because sleep never comes easy and I hope if I’m tired enough, my mind will stay quiet long enough to fall asleep. I know this won’t be the case, it never is, so I take a Tylenol PM along with a Lorazepam for my anxiety. When I’m awaiting scan results I need Lorazepam to help calm my nerves more frequently than just for sleeping. I sleep on my back, so as not to interfere with my colostomy or my port; both on my left side. I have a slight headache and I wonder if it’s brain mets.

Yet through it all, I consider myself lucky. I have no permanent neuropathy from the oxaliplatin. My feet are a little unsteady so I no longer wear Birkenstocks in favor of a shoe with more support, but I can button my shirt with no trouble. Despite the initial outbreak I had with the Erbitux, my rash is well managed. The nausea is ever present but manageable for the most part. For now, I’m not in pain; but I’ve been there and have had a glimpse of how easily a person with valid pain issues can become addicted to pain meds. And I’ve heard so many stories from survivors who have finished with chemo and are cancer free but still suffer debilitating long term side effects from the drugs. Yet I’m here. To write this and bemoan all that I go through. So many families out there would give anything to have their loved ones with them, sitting down to complain about their side effects instead of the deafening silence that once filled their now empty seat at the dinner table. So I take a deep breath, practice my relaxation exercises, think of my husband and kids and tell myself that tomorrow will be a better day.

Meet Brian Novak – Mr. January 2013

Meet Brian – a stage III colon cancer survivor, diabetic and world traveler.

Sometimes, facing a life-threatening disease can leave you paralyzed with fear. Although you’re fighting hard to save your life … through treatment and beyond it can be scary to live your life.

Be inspired by Brian as he explains that he doesn’t let his sicknesses or health stop him from living his life. Watch as he talks about some of his amazing life experiences that have come even after being diagnosed with colorectal cancer.

Want to know more about Brian’s story? Read his Colondar Bio and find out how to get in touch if you want to know more about his world travels, mountain climbing and marathon running!

The Colon Club Adds Teen Survivor, Healthcare Marketer to Board

WILTON, N.Y. – Jan. 17, 2013 – Advocating colon cancer awareness and colonoscopy screening isn’t an easy job. Luckily, two women with a passion for colon cancer and a background in marketing have joined the Board of Directors of The Colon Club to help. Danielle Ripley-Burgess, colorectal cancer survivor diagnosed in her teens, and Debbie Donovan, healthcare marketing consultant, are the two newest board members to join the non-profit group.

“These two ladies bring a tremendous amount of experience and passion to our organization,” said Krista Waller, president of The Colon Club. “They both have a personal tie to colon cancer that fuels their efforts to advocacy. Plus, they’re skilled in marketing and anxious to help us get our message out and save even more lives!”

Burgess offers board a young survivor’s perspective

Burgess first became acquainted with The Colon Club after applying for the Colondar and modeling as Miss October 2009. Her story of colon cancer survivorship beginning at age 17 furthers The Colon Club’s mission to inform communities that colorectal cancer CAN occur in those who are young – even in their teens. Since featured in The 2009 Colondar, Burgess has volunteered as a staff member of The Colon Club helping oversee The Colon Club’s website, social media, marketing and public relations. She is the owner of Semicolon Communications, a marketing company in Kansas City.

“The Colon Club was formed by people like me, for people like me,” said Burgess. “Twelve years ago I never dreamed that I’d find an organization dedicated to connecting young colon cancer survivors like myself. I am honored to be a part of furthering the organization’s mission and continuing to offer hope and my expertise to aid those also facing this ‘old person’s disease’ way too young.”

Donovan brings medical technology marketing expertise

Donovan is joining the Board of Directors of The Colon Club after becoming acquainted with the organization through a sponsorship of the 2013 Colondar. She oversees the digital marketing strategies of Third Eye Retroscope a new endoscopic technology used during colonoscopy to give doctors a ‘rear view’ of folds and turns in the colon helping them see more polyps. As previous Director of Marketing at Advantis Medical Systems and current marketing consultant, Debbie focuses on developing digital platforms that enable medical device and diagnostics companies to increase patient awareness for live-saving technologies.

“My passion for colorectal cancer screening comes from my father who spent his career working on the Hemoccult fecal occult blood test–I grew up talking about poop,” said Donovan. “It’s critical for any-aged patient experiencing symptoms (like bleeding in the stool), to be screening for colorectal cancer. If a funny photo on Facebook or a clever joke on Twitter motivates that patient to take action, that’s a win.”

The Colon Club run by board of directors

As a non-profit, volunteer-based group, The Board of Directors is called upon to govern and direct the The Colon Club and its “crazy, out-of-the-box” projects. All board members are required to provide input, oversee a committee and ensure that the organization is meeting its aggressive goals and operating under best practices of 501(c)(3) organizations.

“Our board members are strategically chosen so that we have a well-rounded team that isn’t only skilled in the areas of operating a non-profit like The Colon Club but passionate about our mission, too,” said Waller.
Special upcoming projects of the group include a photo shoot and release of the 10th annual Colondar (the 2014 Colondar), strategic partnerships with other colon cancer-focused organizations and a national educational tour of “Coco” the Colossal Colon and the 2013 Colondar. The tour will stop in major cities across the U.S. and feature a 2013 Colondar model and education stations at each stop.

Meet the Board of Directors of The Colon Club

About the Colon Club

The Colon Club is a New York State nonprofit founded in 2003 by Molly McMaster, a colon cancer survivor diagnosed on her 23rd birthday, and Hannah Vogler, a cousin of the late Amanda Sherwood Roberts who died of the disease at age 27. The Colon Club serves to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways and to encourage people to be screened when it’s appropriate for them. The Colon Club is the manager of “Coco,” the Colossal Colon (a 40-foot-long, 4-foot-tall crawl-through of the human colon), The Colondar, a calendar featuring men and women diagnosed with colorectal cancer under age 50, as well as an active online message board for young patients and caregivers impacted by colorectal cancer.

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Friend, Foe or Family?

Belle Piazza, Danielle Ripley Burgess, Krista Waller, Adam Benlon

by Belle Piazza

My brother e-mailed me the other day to compliment me on my latest blog entry for The Colon Club, which was nice I thought (the compliment that is). Then he suggested I blog about how a survivors family members are affected by their cancer diagnosis. It’s a good thing he couldn’t see my face when I read that e-mail – as he would have been greeted with a blank stare and look of utter shock and disbelief. My family? Seriously? We don’t talk about anything much more than the weather and what antics my mothers feral cats get into. It’s always been that way, ever since I can remember. At some point as I grew up and moved out on my own, I discovered that it was not only possible to have close emotional relationships with other people, but that it was like food for my emotionally starved soul.

None of my immediate family lives close to me. My mother, who I should note is quite elderly, and sister live in Arizona; my brother is in Florida in the Air Force. Since I was first diagnosed over five years ago, I have seen my mother and sister once when I visited Phoenix and a time or two when I flew my mother up for a visit during Christmas. I haven’t seen my brother in something like seven years – maybe longer. My brother and I e-mail occasionally as do me and my sister. It’s not that I dislike any of them or hold anything against them for our lack of emotional connection; it’s just that we are all very different people with little in common other than biologically. We rarely discuss my disease at all. When we do it is superficial to say the least. “How are you doing Belle?” – “Good” I say. “Great” says any given family member – “Oh look at that cat trying to climb the curtains – isn’t that cute? Is that one of your cats Mom or did someone leave the door open?”.

I’ve wondered how I would feel if it had been my sister or brother who was the one diagnosed with a terminal illness. Would I reach out? Would I try to help? Would I check up on them and follow their journey even if it was just long distance? I really don’t know. Our father died of colon cancer when he was 67. It wasn’t pretty. His death itself was quite peaceful, but the treatments he went through – thirty plus years ago, left him a shell of a man. My mother was like the Rock of Gibraltar through it all. She may not show much emotion, but her sense of duty is like none I have ever seen before or since.

Despite being raised in such sterile emotional surroundings, I’ve always had a desire to connect with others on a deeper emotional level. I can’t imagine going through cancer without a strong network of friends to pick me up when I fall and hold me when I cry. But I hold no ill will towards my family. I remember when I was younger and heard of various friends or acquaintances going through cancer. I didn’t get it. I so didn’t get it. The first person who reached out to me when I was diagnosed was a friend from Phoenix who had just completed chemo for breast cancer. I hadn’t talked to her once about her cancer or asked how she was doing. When she called me in the hospital I cried. Not for her, but for me and how ashamed I was that I wasn’t there for her. She never blamed me and has been one of my biggest supporters ever since.

I have to confess my feelings of envy when I read on The Colon Club about how supportive a spouse, a mother, a sister or a child is to the person going through cancer. Not being born into such an idyllic family setting has always made me a little sad. But that’s about as much thought as I give it. As with anything, things could be better but they could also be much, much worse. I don’t fault my family for what some might perceive as their shortcomings and/or lack of support. In my mind, God has always brought the people I need into my life whenever I have reached out and asked for help and I have faith that this will continue.

We all have to find our way through this disease. There is no instruction manual on how to cope with a cancer diagnosis – not for patients, caregivers or their families. On my fathers death bed, the last words I remember him speaking to me were that he did the best he was able to do. So simplistic, yet so profound. I’ve never forgotten those words and they have helped me keep balance and perspective in my life these past thirty plus years. It’s not my place to judge others or deem whether their actions are appropriate and/or insufficient in any given situation. While I’m dealing with cancer, others are dealing with their own challenges. Sometimes our paths parallel and we can help each other through the tough times and sometimes they veer off in different directions and we need to find solace elsewhere.

While I may not have the support system from my family I would have hoped for, or even close; I do have it from my husband, my kids, my doctors and nurses and of course my many friends. And I have The Colon Club. Five years is a long time to deal with cancer. Some of the friends who were closest to me five years ago are no longer forefront in my life. Others have since filled the void and there is room yet for more. None of us are perfect. We do the best we are able to do with what we have been given. And tomorrow, we will all try again to do things a little better. After all, if we were all perfect, what would we be doing here anyway?

It’s That Time of Year Again

by Belle Piazza

It’s that time of year again. Christmas, sure, but what I’m talking about is applying to be a model in the 2014 Colondar; the photo shoot for which will take place in June of 2013. As a 2012 model myself, I can’t believe how long its been since I was the lucky one in front of the camera, all made up and pretty for my photo shoot. Of course The Colondar can only accommodate 12 models each year. One of The Colon Club staff told me once “Choosing the models is the hardest part of all – I mean how can you say any one persons story is better or more compelling than any other? They’re all important and everyone’s story should be heard”. So many apply and only 12 can be selected.

The production of The Colondar takes months of preparation and hours upon hours of volunteer time to pull off. A theme must be chosen, a photo location, housing, food, travel arrangements, make up, hair and wardrobe just for starters. And the photo shoot, with all photos done by the amazingly talented Mark McCarty, is just the beginning. Putting it all together into a finished product requires the creative genius of Graphic Designer Troy Burns, who lost his father to colon cancer several years ago. And despite all the volunteers who selflessly commit their time to the project, printing a Colondar still takes money, so sponsors must be lined up. By the time the coming years Colondar is released, work has already begun for the next years Colondar.

But the essence of the photo shoot, the real magic, is the human connection that we make there. For many, meeting other survivors during the photo shoot will be the first time they have connected, face to face, with other young survivors. It is a powerful and life changing experience for all involved. And that my friends, is what I hope each of us will experience in our cancer journeys. Meeting other survivors, helping spread awareness and being able to share common experiences can do wonders for our emotional healing.

The Colondar can only accommodate 12 models per year, but there are many other ways that we can connect with other survivors and caregivers. “Fight Colorectal Cancer” sponsors “Call on Congress,” held every year in March in Washington D.C. “Colon Cancer Alliance” holds an annual conference – alternating between either an east coast or west coast location. Their “Undy5000” runs/walks and also “Get Your Rear in Gear” 5K runs/walks are held throughout the year in various cities across the country. Not an Undy5000 or GRIG walk in your city? Contact the organizations about how to put one together! Through the American Cancer Society there is Relay for Life. Many of The Colon Club members have made arrangements to meet others in person during our various travels for treatment or while on vacation to different parts of the country.

For the lucky 12 who will be chosen for the 2014 Colondar, you are in for the experience of a lifetime. As for the rest us, we too have the ability to seek out ways to raise awareness and connect with other survivors. I have been blessed during my five year journey to meet many survivors, caregivers and advocates. When I meet a fellow survivor, all I have to do is look in their eyes and I know – they get it. Without words we connect on a human level and know what the other has been through. It is through these friendships that I draw strength to continue on my own journey. I encourage each of you to reach out and connect with others who are following our same path. There are many terrible things about cancer. But there are gifts too. The greatest gift cancer has given me is the friendships I have made with so many of you out there. It is these friendships that lift me up and help me find strength to face another day.

When I met my fellow 2012 Models, what struck me most was that these were ordinary every day people whose lives had been turned upside down by their diagnosis. These were good people living good lives and it was heart breaking to know what they had been through. And every other survivor I’ve met I feel the exact same way about – good people; terrible disease. These survivors knew exactly how I felt. They knew my pain, my fear, my hope. And I knew that I was not alone in my journey. Meeting other survivors enriches your life in a unique and special way that no other relationships will.

For the 2014 models, be ready for a life changing event that you will cherish forever. For the rest of us, similar opportunities await – we just have to decide how to make them happen. I encourage each of you to look for ways to connect with other survivors in the coming year. After all, it’s these human connections with other survivors that are what the Colondar photo shoot is really all about.