Posts tagged ‘colondar’
Silly Me for Trusting my Doctor
“All of my doctors didn’t listen to me.”
Her words echo on my screen as the news of her death still sinks in. Memories travel back to several years ago at the McMaster’s house, sitting in Adirondack chairs on the deck above the ripples of Lake George, as survivor Melissa Bates shared her story with me. We’d connected online many months prior; as a 20-something rectal cancer survivor she’d found me through The Colon Club. Meeting face-to-face for the first time felt like a reunion between two soldiers who’d been through a war together.
I knew parts of her story. She too was from the Midwest. Her symptoms showed up in high school, she was diagnosed at age 20 while in college. I interviewed her for her 2012 Colondar bio and asked her questions to help me understand the full scope of her journey. I learned there was more to her than cancer. She loved adventure and adored her family. She had lots of friends. Her passion was horses. She liked chocolate and milk – but not chocolate milk. While several elements of her story resembled bits and pieces of other survivor stories, Melissa’s stood out.
Unlike so many, including myself, who didn’t call the doctor when something went wrong, Melissa called the doctor when she noticed symptoms.
Over.
And over.
And over.
Internal hemorrhoids and stress seemed to be reasonable explanations for her doctors who convinced themselves that the 20-year-old consistently calling their offices wasn’t sick. Thank goodness for her persistent spirit and educated approach to treatment. She finally found a GI specialist with a cancellation who would see her. She drove five hours to the appointment where he biopsied a tumor discovered during his exam. She was diagnosed with stage III rectal cancer just days later when pathology reports came in – sitting on a bus by herself surrounded by other college students at Iowa State who had no idea her world had just come crashing down.
Surgery to remove the cancer left her with a permanent ostomy. She fought doctors yet again for fertility options before treatment began; she wanted to be a mom one day. Unfortunately, her cancer was aggressive. Although she experienced a season of remission, it later recurred and after a long, strong fight, it eventually took her life this week.
Swirled emotions of missing a friend and pushing through survivor’s guilt flood the colorectal cancer community each time someone dies. Especially when it’s a close friend who’s also fought the disease ‘way too young.’ As pictures of her over the years show up in our news feeds this week, we respond with the only words we have, “This is so unfair.” The injustice of her short life is unbearable; we struggle with our lack of control. We hate that we can’t change the facts.
As a friend who knew her story, I wrestle not only with the reality of her passing but the burden of keeping her voice heard. She had an indescribable spirit that inspired each of us privileged to consider her a friend. The obvious message of her journey is one to the medical community – no amount of blood in the stool is normal. Never ignore or deny a patient who insists something in their body is wrong. Never assume cancer can’t happen to someone young – even colorectal cancer in a 20-year-old.
But even as I relay those obvious messages, I hear her voice in the back of my head telling me there’s more. Kind of like the day we sat in the Adirondack chairs above the ripples of Lake George.
At the end of her interview that day, I asked her what she hoped her story would do for others. She gave me a kind smile, trying to mask the fact I’d just asked a big question she wasn’t prepared for. She gave me a simple, good answer about how she hoped it would encourage others to not ignore their bodies, and to push doctors to listen even when they say nothing’s wrong and make you feel crazy.
The next day she unexpectedly pulled me aside. Out came a crumpled, folded sheet of notebook paper filled with notes from front to back. She’d been thinking about my question all night and wanted to add more to her response. I rapidly took notes.
She wasn’t satisfied with the obvious lessons from her journey. There was more to know about Melissa Bates and her experience with cancer. Here is what she wanted the world to see – the spirit that will forever be remembered in my friend:
– Embrace people who are going through the same thing.
– Having colon cancer isn’t an old person’s disease.
– Life isn’t over once you have a colostomy. Having an ostomy isn’t as bad as I thought it would be. It’s improved the quality of life that I have. It was basically life or death and I chose life. Where I am in life, it’s only the beginning. My ostomy isn’t holding me back from what I want to do.
– Ask a lot of questions.
– Follow your heart throughout your treatment as far as what you think would be good for you.
– Believe in yourself and in your treatment team; that positive attitude helps you through everything.
– Take time to heal.
– Don’t go back to your normal life too soon.
– My faith has helped get me through everything. He has everything planned out and knows the plan more than we do.
– One thing cancer has helped me learn is take the time to enjoy life and don’t go rushing through it all of the time.
My Colon-Themed Weekend
Sometimes, I let my mind wander back to the hospital bed. I hear the beeps on machines pumping to carry fluids in and take fluids out. I feel the pain in my stomach from a fresh incision. I roll my eyes at the doctor’s voice reassuring me that “checking out” my tumor area will only take a minute. But I try to only let myself stay camped in those memories for a second. Because there are better ones to be dwelt upon.
Making New Memories
This weekend was big for me. And it gave me many new memories upon which to dwell. But these aren’t filled with trips to the bathroom or toilet paper. Instead, they’re full of moments I realized how blessed I am to be a survivor. Minutes I felt so loved and supported. Situations that made me realize I’m not alone. Instances that showed me I am strong.
Over the weekend I took part in several events related to my colon cancer. I shot a national PSA for Fight Colorectal Cancer. I ran in the Get Your Rear in Gear 5K in Kansas City with 50ish fellow team members, team B-Hinds. I had a “Colon Club” reunion with some fellow Colondar models. And most of all – I realized how lucky I am to still be here and going strong.
I’m Not On The Back of the T-Shirt
All cancer races feel somewhat like a running cemetery to me – and I don’t mean that in a bad way. But many times it’s those who’ve lost a loved one that come out for cancer events. Many form a team and rally the troops as a way to have a very personal Memorial Day. T-shirts and signs displaying the years their loved ones lived and the battle they fought are all around. It’s very moving. Especially when you’re a survivor.
At Saturday’s 5K GYRIG race, many t-shirts passed me along the 3 miles listing fellow survivors whose battles have since ended. I realized how fortunate I was to be out in the crowd – running in my black tutu and red beads. My name was listed on the race roster as the B-Hinds Team Captain. Not on the back of the shirt as a beloved daughter, wife, mama and friend.
Survivor’s guilt? Maybe just a little.
Humbled beyond belief? Absolutely.
After a weekend full of great friends, much love and a little sweat (I did run the whole 5K) – all I can really say is thank you. I’m blessed to still be here and have such an amazing community. And Jehovah-Rophe: God is my healer.
Enjoy some pics…
Shooting the PSA for Fight Colorectal Cancer – should come out in March! Photo courtesy of Michael Sola
Did I mention that I got to meet Frank White at the PSA?
Me, Mike and little Miss Mae out at the GYRIG 5K
All of my parents (also now known as the grandparents) came out for the 5K!
The runners from B-Hinds – we had 4 who placed in the race!
Team B-Hinds ended up having around 50 people (including kids!) What an awesome experience!
Me and two of my long-time best buds – Em & Leah
My dearest friend Ber traveled over 3 hours with her family and her 9 month old to be on team B-Hinds.
The Colon Gurl herself came all the way from Evansville, IN for my B-Hind
Colon Club party! Colondar model Belle (Feb ’12), myself, Krista (president of Colon Club) and Colondar model Adam (Sept. ’12)
Absolutely Honored – Phoenix Undy Run
There have been a few bumps along this cancer journey that have made some of the hard days “worth it.” Hot air balloon ride? Worth it. Colondar shoot? Double worth it. And yesterday, I felt absolutely honored by my mom’s best friend, Terri, and her hubby, Bruce, who drove hours just to run in the Phoenix Undy Run in my honor (and left at 5am by the way…). Triple worth it.
To have people go out of their way to run on my behalf still has me speechless even now. I’m honored in a way that I can’t describe, except that it feels really good and really humbling. I don’t only feel so loved, but I feel like some of the hard days that I went through might be able to help someone else. Whether it’s giving them stamina to run or raising awareness that colon cancer can happen in young people, too – it’s awesome to see the message getting out there. I’m absolutely honored and humbled.
I’m thankful for the Colondar that opened the door for me to start talking about my experience, and that it got my story “out there.” (Terri met someone at the race who said she often tells my story to people she talks to in Arizona.. crazy!) And I’m so thankful for great friends who help carry on the message of colon cancer awareness … and hope for survival … from city to city, and in this case, state to state.
Thanks again Ahlfs, you absolutely made my day! (enjoy a few pics I stole from Terri’s Facebook!)
Bruce at Phoenix Undy
Terri at Phoenix Undy
Their sign for me... this rocks.
Bruce holding a copy of the 09 Colondar they got at the race!
Des Moines Get Your Rear In Gear
There’s something powerful about getting to meet people “like you.” Once again, I had the chance to meet fellow young colon cancer survivors at the Des Moines Get Your Rear In Gear event this weekend.
Colondar Models from '09, '10 & '12
I had a great time. Five past & present Colondar models met up to support this great event. I met new people. I slept in an amazing hotel suite. And my daughter walked through an nflatable colon.
On the way home, Mike asked me what stuck out the most about the weekend. And when I thought about it, my answer surprised me. I met another young survivor, age 26, at the race. She was diagnosed 2 years ago. Ironically, her name was also Danielle. And she explained she was Stage IV. She was wearing a continuous pump to help with stomach cramps. And yet she told her story with such courage, and a near flippancy – yet a good flippancy. She was upbeat and positive. And when her young, blond son ran up to her and hugged her leg, I saw why. Her journey and the courage she portrayed to me. Sure, I bet she has rough days and nights at home. But meeting her gave me such inspiration. I met one of the truest definitions of “hope” this weekend.
So… there you have it. Short synopsis of our short road trip to Des Moines. Can’t wait for next year!
Props to Mikey for running the 5K!
Mae walking through a giant inflatable colon
Our family in a colon
Humbled, Grateful and Slushie-fied
There are few places that feel like home to me. Don’t get me wrong, I absolutely love to travel. But as someone who uses the restroom like 10 times/day, I like to feel at home.
If you would have told me five years ago that a charming lake house in upstate New York would feel like home – even with over 20 people running through it and only two bathrooms – I probably would have laughed really hard, possibly tooted, and said yeah right – I’m from the Midwest. But strangely enough, that has come true as the McMasters’ pad and all the homes that run along Hulett’s Landing in Lake George, NY are like a second home to me. Did I mention there is a slushie machine?
I’m coming down from my “colon camp” high once again and trying to reel in the feelings and emotions that come after spending four days with fellow colon cancer survivors. Last year I met up with past models at our reunion. This year, I had the amazing opportunity to go back to Lake George. I’m still tingling and humbled at the opportunity. I pray to God I never break my fingers; these babies and the power of the pen have opened up the opportunity for me to serve as part of the team that makes the Colondar happen. I’m still beside myself. Not only do I get to write the bios this year, but I just had the opportunity to sit down and interview twelve of the most inspirational people on the planet.
The 2012 Models
There are not many things that leave me speechless – or maybe word-less – but I’m just not even sure how to talk about the 2012 models. It’s hard to encapsulate Belle’s reactions to how great a flower smells or her first sight of Lake George. I’ll always remember Dave’s cool, calm demeanor when the gals dropped at his feet begging to hear his voice, Roger’s genuine happiness, Kim’s hilarious one-liners and Melissa, Paige and Reagan’s tales of bravery and persistence as 20-something survivors. I loved Connie and Staci’s wit, Tim’s sly smiles, and Dan’s humbled, quiet reactions toward every running comment (he’s a major marathoner.) Oh – and then there are Adam’s jokes.
Fellow Colondar models, this group is special and it’s with great honor that I got to help welcome them into our family. As I sat down with each one of them, I was struck by a common thread that ran through each of their lives: gratefulness. And as I sit back, rejoin my life (well, sort of – I’m on the beach in Florida… but that’s beside the point) I can’t get their words out of my mind.
“Don’t sweat the small stuff.”
“Be grateful for what you have.”
“Take it one day at a time.”
“Life’s awfully temporary.”
Being Grateful for my Life
You know, it’s funny the way life has its way of twisting and turning and going on with or without you. About half way through the weekend I was chatting with my dear friend Erika about some of the models’ comments. I realize that three years ago during my interviews, and even years earlier I would have said the same stuff. I probably still do. But I was very aware this weekend that I’ve not been living like a colon cancer survivor who knows life is temporary. I do sweat the small stuff. I forget that life is short. And with all that I’ve been given, I go through life so fast sometimes, I don’t stop and offer thanksgiving for life in general – much less everything that God has brought into it.
It’s with my deepest gratitude that I was at Lake George last weekend. What a life-changing experience once again. And while yes, I am motivated to exercise more (thanks, Dan…) I’m even more motivated to live differently; to kiss my husband more often, hug my daughter even tighter and not let one day go by without thanking God for life.
Enjoy some photos; you’ll have to wait until September for the good stuff…
Kansas City represent!
The 2012 models
Cancer buddies
Oh Yeah… My Blog!
Wait – I have a blog? Oh yeah…
Sorry guys, in the midst of working for the church, growing my small business and um, getting the hang of this mom thing – good ole’ Semicolon Stories has gotten the shaft. But don’t worry, you’re not alone. Our dogs feel the same way too.
But, I’m just checking in to say hello to the blog world, and that life here is good, busy, changing, yet good. Let’s see here… for a few updates…
- My hubby is about ready to change careers and bring his teaching gig to an end in about a week. He’ll be joining me in the website arena and working on CSS for a website company.
- Mae’s doing great. She’s doing this awesome rock-n-roll, I’m about to crawl thing now. She’s really great at getting on all fours and then lunging. I love it – it’s not pretty but she doesn’t care. She can get anywhere she wants these days – except out of her bed and onto my plate.
- I’m doing well! Health-wise, I got the “all clear” again this week after another CT scan. Docs wanted to make sure that the pelvic activity showing up on the scans is still just scar tissue. The CT last week didn’t show any concerns. Hallelujah.
- I’m working like a beast – that is my imagination of how a beast would work. I’m also in the midst of approaching a healthy balance between my full-time job and side business, so in the meantime I’m keeping rather… active. But don’t worry – it will be changing soon. Promise.
- And my last bit of WAY exciting news for now-
(no we don’t have another kid stashed away or anything like that…)
But – I am headed to NEW YORK again in a few weeks for the 2012 COLONDAR SHOOT!
Oh my friends, I am so excited, honored and in awe that I get to return to the magical place of all-things Colondar. I’ve been asked to write the bios for the new 12 calendar models. I can’t wait to meet them, to write their heroic stories, to make more friends who’ve also experienced colon cancer at a young age, and to return to see good friends at the shoot.
So, that’s a short and quick update! I’ll make it a goal to post more soon but in the meantime, we’ll just be chilling in a laundry basket.
The New Recruits – Introducing the 2011 Colondar
I have to say, while I am very partial to ’09, the 2011 Colondar gave our group some stiff competition.
The 2011 Colondar
Not only do the models have amazing stories, but the design on this bad boy is beautiful. Bright colors, cheerful smiles, and real personalities shine through on the Colon Club’s 2011 Colondar.
I’m especially fond of this group as I’ve had the opportunity to do some press for the Colon Club this year. It’s been awesome to put my PR hat on and try to help gain some exposure for this amazing project. My life wouldn’t be the same without the Colondar and the Colon Club. That’s why we keep working on these crazy projects and spreading the word.
Check it out yourself here.
Also remember- Colondars make great gifts for those in the medical community, cancer survivors, and especially gifts for those recently diagnosed with colon cancer.
Enjoy!
#colondarreunion
If you would have told me that in my lifetime I would join a group of people that come from all over the country, of varying ages, with different family backgrounds, opposing political views, contrasting views on religion, and even very different ethnicity, life experiences and definitions of “fun,” – and then told me that after spending a weekend with this group I’d be mildly-depressed after heading home and separating from these people, I might have not believed you.
But that indeed is what’s happened.
Modeling for the 2009 Colondar was an experience that changed my life. At the risk of sounding too cliche and cheesy, it really, really did. But the amazing thing is that I didn’t even realize it at the time. I walked into the home of the McMaster’s in May 0f 2008 as a 7-year cancer survivor. Sure, I’d been diagnosed when I was 17 and had a crazy story to tell, but I was kind of “over it.” I was excited at the opportunity to participate in the calendar, but strived all week to relate to the other 11 people who were sharing their stories of surgeries, treatments, post-treatment, emotional issues, family issues and the other myriad of problems that come with colon cancer. I could relate, but only to a point. I had been diagnosed so young and was so far removed from it. I took it all in that weekend and went home a little shell-shocked. It’s like a door that had been closed was suddenly reopened, and I was faced with thinking about my cancer once again.
I wasn’t sure if that was a good or bad thing until in Dec. of 08 when a routine colonoscopy found those little annoying polyps growing once again. You know the story… surgery, second diagnosis, genetic testing…. the past year of my life. While it’s been no cake walk to walk through cancer once again, this experience has been different this time thanks to my experience with the Colondar, and my several little “colon angels” who’ve helped me through this process.
Jon, Mr. February, was there from the start and has been my coach through it all. He also has had the same procedure I had and lives with an “itty bitty” colon. He helped me before, during and after surgery, and still keeps tabs on me to this day, encouraging me that what I still face a year later is normal. Trish, Miss March and Karen, Miss December, have been two pillars of inspiration as they too faced another diagnosis of cancer since we met in 2008, both of breast cancer. To see them gracefully battle and make it through another cancer (and still find times to laugh!) has also given me the strength to keep going. Libby, Miss January, has been my best buddy through this all and such a dear friend. She’s my roommate and my girlfriend who’s in my same age range, and been such a blessing to have as we figure out how to live as 20-something colon cancer survivors. And Erika, the yearly cover girl, means so much to me I can’t even explain. We were diagnosed only a few months from each other, her at age 22 and me at age 17, in 2001. We’re two people who really “know” what it was, and is, like for one another and strangely enough continue to be in sync with the different seasons and issues of cancer we face. And these are only a few of them. I’m daily inspired by my other ’09 buds: new-mom Allison, Doug, Jaimie (the guy lives with a J-pouch!) Greg & Todd (stage 4 survivors!), Shaye and Terri – they are all so near and dear to me.
The Colondar network has been a life-saver and a game-changer for me. That’s why this past weekend when the first-ever Colondar Models Reunion was planned, I knew I had to go no matter the time, location nor sacrifice. And I am so thankful I did. I met up with several old friends, and made many new ones as I was introduced to Karen from ’06, Dean from ’07, Becca from’08 and Evelyn from ’10. I spent time in Vermont all week with the former models, and then traveled to Lake George in upstate New York once again to meet up with the Colon Club crew that was working the shoot, as well as the new host of 2011 models.
I had an absolutely amazing and incredible time. Taking in the beauty of Vermont while spending time among people who really “get it” when it comes to life as a colon cancer survivor was exactly what I’ve needed to help heal my heart and fight the emotional battle with cancer. It helped me realize how much of my day-to-day still revolves around the fact that I had colon cancer, and that while I might feel alone at home, I’m not alone completely in it in the world. It helped me take a much-needed step toward addressing the repressed feelings I’ve had about this second diagnosis and begin to work through them. It made me want to keep fighting off some of the negative pressures cancer puts on me, and gave me a support network of people who can relate and work through this with me. It brought out sadness and sorrow at our situation, yet hope and joy that we’d made it and that we’re together. It motivated me to keep going.
I’ve used many words to explain the significance of our group and the impact this past weekend had on my life. And while I could keep going on and on, I’ll let the pictures explain the rest. Thank you to all of my Colondar family for an unforgettable experience, and I cannot wait to see you all again…
The Cycling Semicolons
Colon Club Friends
Todd is loved by us all!
As many of you know, I’m involved in a community of colon cancer survivors through The Colon Club. This amazing organization has plugged me into a group of people who’ve also battled the disease under the traditional age of 50 years old. I had the unique opportunity to model for their 2009 calendar, and in the process met some amazing friends. Each one of them has a story that is so inspiring, and everyone is making strides in their own way to carry on the mission of preventing and beating this disease! One of the huge inspirations is Mr. November, Todd Colitti.
The Cycling Semicolons
Todd is cycling across the country right now in an effort to raise awareness and funds for the Colon Club and Get your Guts in Gear. What’s so inspirational is that he was diagnosed with Stage 4 colon cancer 10 years ago and often referred to as “The Miracle Man.” He’s peddling from the Atlantic to the Pacific , and not letting anything stop him.
His team, “The Cycling Semicolons,” (see the common theme?) is in Texas right now about about half way through. He told a reporter, “he has lost eight pounds, and is “saddle sore” some days. He has gotten three flat tires on his bicycle, but otherwise said he has plenty of energy to finish.” He hopes to make it to the Atlantic Ocean by May 14.
Today’s post goes out to support Todd and his journey. Thanks for helping spread the word, friend! All of us with semicolons, colon cancer, ulcerative colitis, ostomies or just GI-stuff appreciate it! I know you can make it!
Show Todd some Support!
To read an article about Todd’s journey at the half-way point, click here!
To learn more about the Cycling Semicolons, visit his page.
To donate to Todd’s cause for The Colon Club, go here.
Semicolon Stories 