One of the best blessings of life is weeks when I can report that the life of this semicolon is… “normal.” I’ve been home for a full week, which after the past few travel-filled months feels very nice. Being home has put me into “nesting” mode. Which is weird… don’t start the rumors… I’m not making room for more kids. But I think a combination of the fall weather and my schedule slowing down has me wanting to clean, organize and decorate with fake fall leaves. Oh – and make pumpkin bars. Maybe on Monday…
This girl just wanna… bake cookies
As of this Monday, it will be four weeks since I ate anything consisting mostly of sugar. I challenged myself to a 4-week “sugar fast” where I cut out the candy, cookies, pies, cakes – everything I really love that brings me immense joy. Part of it was strategic – get through Halloween. The other part was experimental – could I really take myself off sugar? Am I addicted? Watching the new documentary “Fed Up” had me curious about just how much sugar I consumed and if I indeed was addicted.
The verdict? I ate a lot more sugar than I realized but I surprisingly was not as addicted as I thought… if you excuse the fact I daydream about peanut m&ms once a day.
So, I’ve not had one piece of candy corn or even a cookie crumb for a few weeks. On Monday, the challenge ends and I have plans to bake and steal some of Mae’s Halloween candy. But, then the sugarfest ends.
I’m going to keep up this very reduced sugar intake. As much as I hate it – I do feel less inflammation in my tummy which is often a problem for this semicolon. I’ve found there’s other things than chocolate to turn to when I’m stressed. I’m learning how to celebrate… and not cope… with sugar.
Visiting Mayo And Keeping My Clothes On
I recapped my trip to Mayo Clinic for the Fight CRC blog a few weeks ago but wowza – what an opportunity. I was one of three patients chosen to attend a Social Media Summit. The fact I work for a colon cancer nonprofit and do social media as my job was a total bonus.
I sat amongst many professionals working for hospital systems and healthcare groups, learning the best tips for websites, blogging, Facebook and more.
Part of the gig also involved getting up after lunch and sharing my story. (I was really glad to go last since I discussed colorectal cancer.) I broke out my scrapbooks and began sharing the past 14 years of my life with strangers, admitting that I pooped and even dropping in a funny colon pun every now and then.
All in all, it was a great week. A long week. But a great week. I saw the true opportunity we have as patients. I had a very “pay it forward” moment as I felt fortunate to be alive and sharing my story. Hopefully it will help someone else in the same spot. Our stories as patients create more impact than any of us ever think – in places we’d never dream.
So that’s why I was at Mayo Clinic for a week. And let me tell you – not being admitted & getting to keep all of my clothes on was in and of itself a victory.
Life is Good
Those are the highlights as of late. Life is good (outside of my dad falling off a ladder and breaking his elbow in five places!) While Mikey played a worship retreat over the weekend, Mae and I took a trip to my alma mater, University of Central Missouri, to celebrate with the PR department on a national certification they just received (CERP.) Although she’s small now, I couldn’t help but think just how fast time will go before we take her to college.
For a second I got happy…. (Don’t judge me. Did you see this devotional?) But then, I got sad and kind of gooey inside. It’s not that I don’t want her to grow up… I do. But I’m trying to really enjoy what we have now. She won’t carry Mulan under her arm forever.
So that’s the update!
Be watching my Twitter for updates on Monday as I break this sugar fast!
And tell me – what’s the first thing YOU would eat or drink if you avoided sugar for 4 weeks?
Update: I shot this blog post over to Huffington Post Sports and they posted it today! To avoid duplicate content I kept a snippet here, but to keep reading, head over to the Huff Post to read & share the full article: 5 Reasons the KC Royals Aren’t the Worst Thanks!
I never write about baseball – but today – I’m writing about baseball. Something needs to be said.
I hate that I clicked on the article “13 Reasons the Kansas City Royals are the Worst” because my click added traffic to a page I wish would quickly fade out of my Facebook news feed. Everyone’s entitled to their opinions, including San Francisco writers who prefer their city’s team over mine.
But after reading a downright mean article that’s not only picking on the team, but our fans, I want to stick up for the city I call home. The city that, like it or not, is making headlines and charming America.
Here are 5 reasons that the Kansas City Royals team (and actually, Kansas City) ISN’T the worst. No need to find 13 reasons.
I think our Mayor Sly James actually said it best in his Open Letter to America posted on his blog. So, I’m just expanding on his 5 points because I agree that Kansas City is a wonderful place and applaud a team that’s reminded us all why.
This week I spent some time looking around online for some resources offering support for a friend. No matter if you face cancer or some other situation, the online world offers a ton of information and the chance to connect with others who’ve also stood in your shoes. I happened to run across a website where people blogged about their experiences and gave a voice to their situations. I was reminded of the power of sharing our stories, no matter what point in the journey we’re on. I’ve taken a break from this blog over the past several months to work through issues I face privately versus publicly. And it’s been much needed. However running across posts written by others who’ve faced difficult times inspired me to start updating this blog again. Semicolon Stories is my blog to show what life is like having faced colon cancer at a young age. So to all of you who keep up with my journey, here’s an update. And for all of you just now finding this blog and looking for someone else who’s faced such a hard cancer diagnosis at such a young age – welcome.
I thought I’d just give you a quick update on all things life lately. First off… vacay.
As someone who freelanced for several years, having paid time off where I get paid to relax is new to me. It’s been pretty great. My step-brother’s wedding in Florida took us to the Sunshine State. And while we were there, we extended our trip and skipped over to the magical world of Disney. It was worth every long line and expensive $10 hamburger to see my 4-year-old’s face light up princess after princess. We met a total of seven magical ladies during our visit to the Magic Kingdom. I even got a little giddy to meet Merida, the princess from Brave. We stayed in a place that offered a poolside room, complete with a Tiki Bar. The hubby and I took advantage of that during nap time. It was fun to get away, hang out with the family and relax.
One thing I did on this vacation that I’ve never done before is cook. Over the past year I’ve cleaned up my diet and stuck to an exercise routine. So after day 4 of eating out and inhaling not-so-great food, I’d had enough. So had my itty-bitty colon. Luckily we booked a condo that came with a kitchen. We hit the grocery store one night and I cooked all of our meals for the rest of our trip. Not only did it lessen my stress, the food was safer, healthier and better for us. Yay.
I’ve enjoyed this time to unplug and rest up. My blogs have benefited too – writing is my hobby. But I’ll tell you – I’m excited to go back to work on Monday. I think that’s a really good thing. I’ve missed my team and the work that I do. I still feel blessed to have what I consider my “dream job” and work in colon cancer all day long. I can’t wait to get back to my buddies at Fight CRC.
Part of what took me away from this blog was the fact I started up a new blog where I post devotionals. I’ve had the opportunity to be published in a few Christian devotional books and through that process realized it’s where my passion lies. I love
writing them. So – I started a website specifically for me as a writer and speaker… it’s where I post my writings that have a faith angle to them. If you’d like to check it out… here’s the link! The great thing is that you can sign up and have the latest devotional emailed to you, which makes me smile.
What’s downtime? But really. I’m still learning to carve out days and nights full of downtime in the midst of a busy life. I travel for work quite a bit and between family commitments and other fun things that come up, we tend to stay really active. Downtime is more of a wish than a reality some weeks. But then again, I’m blessed for it. I can’t help but see it any other way.
Although the freshness of a cancer diagnosis and treatment has worn off, I still find myself forever remembering what it was like to have too much downtime. The memories of my inability to stand in the shower for 5 minutes, much less travel on an airplane or take a road trip in a car, are ever-present. The fact that I’m physically able to stay very active and on-the-go is a blessing in-and-of itself. And I’m thankful for it. Each place I go, I try to carve out downtime while I’m there. I’m a big fan of naps (the fatigue never really ever goes away.) And our family does make sure to rest up and take it easy as much as we can. I’m happy to be healthy and in this place. It’s something I truly don’t take for granted.
That’s a quick update on life lately. I promise to update more often. Sometimes in the midst of colon cancer you wonder if you’ll ever feel normal again. I’m here to say you will… it’s a “new normal,” but there certainly is life after colon cancer. And I’m one voice that’s here to talk about it.
“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.
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.
I recently renewed the domain name to this blog and realized I’ve not written one post all year. ALL YEAR!
Part of that is unintentional. Working at Fight Colorectal Cancer means that it’s “go time” right when January starts. For two months we work nonstop in preparations for March – Colorectal Cancer Awareness Month. And then once March hits – we’re in a flurry of activity. I’ve ridden in more airplanes, subways and taxis the past three weeks than I have in my entire life.
And every second’s been worth it.
So, I’m just now slowing down after a crazy few months and personally blogging again. And while my activities have taken up the majority of my time, my schedule isn’t the only excuse for not blogging lately. There’s another reason.
Not all of this journey is public. And honestly, I didn’t feel like it.
If I’ve given awareness to anything over the years, I hope it’s a few things: colorectal cancer in general; a hope that faith can carry you through anything; and, the realization that this disease has many layers and can hit you in different ways.
The KC Star ran my story in January through a full-page spread in the FYI section and an AP-syndicated story that followed. It was certainly gracious of them, and unexpected by me. I had no idea my little birthday bash would soon become a headline story across the U.S. (or I guess the world, since an Australia newspaper picked it up.) For the past several months I’ve seen my face behind The Colossal Colon in many news feeds and articles on a nearly daily basis.
Between my job at Fight CRC and the publicity of my birthday party, I’ve had more doors open to share my story than ever before. Hospital newsletters, Sirius Radio, colon cancer walks, the Today Show… just to name a few. And while all of this has been amazingly awesome… I’ve not blogged about it much.
Because not everything is public.
No, there are no secrets I’m hiding. My marriage is great. Daughter is amazing. All-in-all, things are going really awesome here. But in the midst of a crazy few months, I’ve taken the slow moments I do have to soak it all in and process how I’m feeling – and not through the Internet. Sharing links to social media are easy. Writing blog posts about the experiences – not as much. While this blog is an amazing tool to share my life and my thoughts with others, I’m learning it’s OK to not share everything. Or at least right away.
There are some moments reserved just for me and my family. Some experiences that I’ve wanted to process and think through before posting about. Some days that weren’t ready for the headlines. And I’ve come to let myself be OK with that.
Some who go through cancer or really, hard times in general, speak out right away. Others take a little while to get there and find their voice. And for me, I’ve gone back forth depending on the season. Sometimes I’m ready to say a lot; other times not so much. And what I’ve learned over the past three months of my “blog silence” is that it’s all part of the journey. God uses our experiences to help others when we’re ready. But sometimes that takes a bit of time to get there – or at least some time to process things personally before they inspire others publicly.
There’s no one way to fight or survive cancer. The different layers and phases are all part of the journey. Sometimes I speak out and blog about what’s happening. Other times, I don’t. Going quiet is OK. But, as this blog post shows, I don’t stay quiet for long.
Well, I didn’t end up sending out Christmas cards this year. A little 30th birthday bash kind of took up a lot of my pre-holiday time. But, I thought I’d wish everyone a very Merry Christmas through the blog.
Thanks to all of you who’ve sent cute cards and fun photos of your kids our way. My you all are good looking.
As I recap the year, I find myself wanting to pinch my arm. It’s been unbelievably awesome in several ways. Here’s a quick snapshot of just a few of the reasons 2013 will forever be a favorite, and what I would have included in an old school Christmas letter.
Let’s start with the obvious – this girl has amazing hair. Her cute little fro has always been just the perfect accessory to her charming personality but this year it’s taken on new heights. Literally. In addition to having some of the cutest locks on the planet, our 3-year-old is full of sass, love and imagination. She can turn anything into a magical kingdom where even something as simple as a spoon and fork at a restaurant become a “mommy” or “daddy” — or sometimes two princesses. She took up dance this year. She became a huge fan of the Muppets (thanks to Daddy). She enjoys playing with horses, going to the zoo and even going to concerts. She can often be found singing… and talking. This gal’s got a song in her heart and loves to engage in constant conversation.
I’ll start with the breaking news – this stud just won his Fantasy Football league. It only follows suit with the kind of year Mike’s had where leading seems to be his thing. He’s the Creative Director at Turn The Page Online Marketing and enjoys his job. (No, he doesn’t miss teaching.) He’s led worship at church throughout much of the year. And, he led our family and two of our close friends to North Carolina in September for one of the most epic road trip vacations ever. Speaking of epic, he started jogging over the summer and found himself running 13.1 miles for fun. There’s not much more to stay except that he’s seriously the best husband and an amazing daddy.
This year was a beginning and an end to several things for me. Obviously, I left my twenties. I also transitioned and made my marketing consulting and blogging business a “side business” as I began working full-time for the nonprofit Fight Colorectal Cancer. I’ve enjoyed getting to travel for work a bit and think I’ve mastered the carry-on luggage system. I ran my first 10K and started working out consistently. I had some blogs published by the Huffington Post. And I made some awesome new friends while at the 2014 Colondar shoot last June. Overall, it’s been a great year.
People told us to expect time to go quickly when we adopted Mae. Now looking back at almost three years, I see why said that. I blinked and suddenly she’s old enough to sleep in my old twin bed and go to the dentist.
I’ve been blessed with another year of health (I will be cancer-free for five years in June; I’ll be a 13-year cancer survivor in January.) God’s provided for our every need. And we’ve got more friends and family who love, support and encourage us than an after-church Chinese buffet.
To all of you out there, we wish you a very happy 2014. Here’s to another year ahead.
– the Burgess family
Tonight we kicked off the first of our family Christmas gatherings. But it was unlike any others we’ll experience this week. A local BBQ restaurant made a great ‘neutral’ meeting place as we traveled across town to get together with people we met a little less than three years ago. A group who we see only a few times each year, yet consider them family. Our birth family.
When we initially began our adoption process we requested a semi-open arrangement. We were cool with exchanging first names and maybe state or city, but we didn’t think we wanted a lot of contact with the birth family. Mae’s adoption came along unexpectedly and detoured our plans. The situation created an open adoption by default. And now looking back over the past three years, I couldn’t be more thankful that our plans and preferences changed.
I don’t talk about our open adoption a lot, nor have I ever specifically blogged about it. But coming off of a night like tonight, I felt I needed to share about how wonderful this arrangement can be, and how fortunate we’ve been to have a birth family enter our lives. Sure, it’s nice to have a direct connection to Mae’s birth mom for reasons most would assume – health history and knowing her story, etc. But more than that, it’s amazing to have a birth mom, birth uncle and cousin and birth grandparents in the picture for indescribable reasons. There’s something about continuing and nurturing the bond of family even if it looks a little different from the ‘norm’ that is powerful. Redemptive. And all around blessed.
We sat and laughed tonight (mostly at my energetic three-year-old.) We told stories and caught up on life. We exchanged Christmas gifts. And more than anything, we all gleamed an unspoken appreciation for one another yet again. It happens every time we get together. And as the years go on and our relationships deepen, I know it will only continue to grow.
I recognize that not everyone in an open adoption has this kind of relationship with their birth family members. There are a lot of other stories out there that aren’t so ideal. We’re lucky to have a birth family that’s kind, considerate and amazing with boundaries. They’ve truly made this an incredible experience.
Open adoption might not be for everyone, but I’m glad that it was the right path for me. Our birth mom is the strongest person I know and she continues to amaze me. Her love for [our] daughter has taught me more about selflessness than anything on this side of heaven ever will. Knowing the family my daughter was born into gives me even more appreciation and understanding of her. That in and of itself is an amazing gift – especially at Christmas.