Posts tagged ‘colon surgery’

#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…

June 15, 2010 at 11:06 pm 1 comment

One Year Cancer Free… Again

I remember how cold the OR waiting room was a year ago. For whatever reason, the warm blankets weren’t cutting it that morning. Maybe it was the frigid temperatures of the hospital, or it possibly could have been that my nerves were fried and my body temperature off. Plus, the sterile wall paint color wasn’t helping calm me either.

My family was crammed into the tiny 12×12 space they allotted me. We had mom, dad, Mike, Nick, and I think at one point Mike’s parents joined us too. It was comforting yet scary. Looks of compassion, yet fear behind the glances. Everyone, including myself, hated that I was in that spot again. The tubes, tape, ugly hospital gown – we all hated that I had to go through it again. But what gets me is that we didn’t even realize what was to come.

The surgery went relatively “well” in surgery terms, except for that it kicked off a three-week extravaganza of me residing in a hospital bed after many complications and a second surgery. Apparently removing almost all of your large intestines through a major colon surgery isn’t always a four-day cake walk. For some, it is. Unfortunately, I drew the small stick that day because in addition to a physical “hospital-esque” beating, I was handed my second diagnosis of colon cancer.

I struggled going into surgery. I had a heavy feeling that I was entering something much more than just life without colon. And after my pathology reports confirmed that the polyp-in-question was indeed colon cancer again, I understood why something inside of me just didn’t feel right.

You know, cancer is a beast. It’s scary, confusing and just mind-blowing. And although today marks a day where I “should be” celebrating that I’m “one year cancer free… again” I just see it differently this time. I’ve had a one-year cancer free anniversary before, it was in January 2002 and this upcoming year I will have been a 10 year survivor. But today feels so different than any other cancer anniversary I’ve had. It is joyous and exciting, but it’s also emotionally difficult because as much as I want to celebrate it, I don’t feel “cancer free.” My CEA levels and path reports may indicate it, but my heart doesn’t feel it. And I’m not sure that it will ever get back to feeling quite right.

I say all of this not to be a bummer, nor gather a crowd to feel bad for me. But I say it to be real, and to hopefully encourage any other survivors or caregivers out there who are going through the same thing. Today I celebrate that I’m only in a routine of check-ups and that I’m able to live a “normal” life … from the outside. I celebrate that I’m not hooked up to a chemo bag nor sent through a radiation tube each week, and that I haven’t been for nearly 9 years. I rejoice that we found the cancer early one year ago, and that it was completely removed with surgery.

But I also pray today for what’s to come. I pray that as much as I wish that this cancer book would just close, I have the strength to realize that it probably never will. I pray that I can put on the “armor” I need to stand strong and keep fighting it off when it continually tries to come back. And I pray that the further and further out from the cancer diagnosis I get, and the more and more I realize what being a cancer survivor really means, I’ll keep believing it’s why I’m here in the first place and find my joy in that.

June 9, 2010 at 9:24 am Leave a comment

My Less-IBS plan

I’ll admit, sometimes I live in denial.

Maybe it’s just that I want to blend in. Or, it could be that the new burger botique across from my workplace keeps calling my name, and regardless of what will happen after I try it, I decide to go anyway.

While it’s fun (and in my opinion, very needed) to occasionally live in denial when you’re someone who has IBS-like symptoms, it’s only fun after a few days or at the very most, weeks, if you’re lucky.

So, after the past few weeks of splurging on all of the truffle fries, burgers, greasy tacos and oh, so much more… I’m taking the next few weeks to get back to feeling healthy. I’m ready to have my energy back, stop using the restroom at 1am, and eliminate the constant abdominal ache.

And, for the sake of accountability, and to help educate the world about life after colon cancer and colon surgery, I’ve decided to blog about it. Aren’t you lucky!!

So… I’m still formulating my plan. But here’s what Day 1 of my “Less-IBS” plan has looked like so far. Stay tuned for oh, so much more.

DAY 1 of Less-IBS
1. Get plenty of sleep. I’ve been running on “E” or “too close to E” for a few weeks now. This majorly impacts my mood and attitude, but even more my GI tract. Enough sleep = much better chances to having a better day.

2. Read about the triggers, remind myself of a good IBS diet to follow. Two resources I’ve used:
IBS diet recommendations from Midwest GI
Great website… and book. My mom bought me the book last summer after colon surgery and I refreshed my mind with its helpful tips and ideas this morning.

3. Plan my meals. Oatmeal for breakfast, got some soup for lunch, and set out chicken to cook for dinner. The more planning I can do, the better this is going to go.

4. Store list. “Eating for IBS” has helped me know what to keep my kitchen stocked with. I’m down on some of the important ingredients, must go soon.

Okay, so that’s my plan for Day 1…. we’ll see how this goes.

May 19, 2010 at 12:40 pm Leave a comment

Blowing Into Test Tubes aka My SIBO Test

Last week, I had the unique experience of testing for SIBO – Small Intestine Bacterial Overgrowth. Characterized by symptoms like:  bloating;  gas; pain; diarrhea; irritable bowel syndrome; and other *fun* things, I thought SIBO had just become my middle name.

My friends at Midwest GI were explaining what exactly SIBO was, and suggested I take the test for it. I agreed since it seemed easy enough. I got a small kit to take home to do a breath test with simple instructions to follow. Yep, just like the cops test for booze, except this test is better – it’s testing for bacteria in your small intestine! Woo hoo!

The day before the test, I had to follow a strict diet. This wasn’t too hard, since it was basically the diet I followed post-colon surgery. I could only eat white bread, rice, meat and eggs. Here’s what my menu looked like:

Breakfast of bagels & toast

We call them "toad in the holes" (basically an egg in grilled bread)

Now, I will admit…. it started to get a little harder to follow at dinner.

Cookout! Grilled hot dogs and hamburgers

Sort of hard to pass all of this up.

I followed this diet for 24 hours before my test. Though challenging at times, I got through it. I woke up the next morning ready to dive in and blow into some test tubes!

I had to wait an hour after I woke up to begin. I started getting the preparations ready by laying out all of the kit’s contents and triple-checking the instructions. I also had to remind myself that I could not work out an hour before, nor anytime during, the test. Needless to say, I was ready to begin.

The Testing Begins

I took an initial baseline test, drank this sugary-substance stuff, and then blew into a new test tube every 20 minutes.

Halfway there!

Because I had to stay nearby, it was a great way to get some things done. But yes, after three hours of blowing into test tubes and not eating, I was ready for it to be over.

Finished!

I finished all ten test tubes and then drove it back to Midwest GI for them to run the report. Super easy, and painless. I was so thankful that I could do it at home.

In my case, the test ended up negative – I do not have an overgrowth of bacertia in my small intestine. I’m guessing more of my complications have to do with post-surgery stuff, and because I only have a few inches of large intestine, much of my digesting is taking place in the small intestine. However, for anyone who does have their entire colon and still can relate to the IBS-like symptoms, I recommend getting tested! Even if you don’t have your whole colon, it’s worth getting tested if you’re having some similiar problems like too much gas or bloating. It’s an easy test, and could be the solution to your GI-related problems.

For more info about the SIBO test, click here.

May 11, 2010 at 10:59 pm Leave a comment

Yeah … and No

Yeah, having cancer is really hard.
Yeah, it’s also one of the most eye-opening experiences you will ever have.
No, it doesn’t always hurt.
Yeah, it often does. Or at least the tests for it are a huge pain and the stuff you drink tastes nasty. Colon surgery is no cake walk either.

Yeah, I’m usually feeling pretty good. I’m recovered from surgery.
Yeah, I’m still learning the ropes to life without much colon even 10 months later.
No, I would never ask for a double-colon surgery ever again.
Yeah, others have had worse than me, though.

Yeah, it’s hard to keep up morale sometimes.
Yeah, it’s way easier with good friends and family.
No, that doesn’t always cut it though.
Yeah, sometimes you do just need a day or night alone to take it all in.

Yeah, I think about cancer just about every day.
No, not because I’m directly fighting it right now or on chemo. But because its implications impact me each day.
Yeah, I’ve found a way to manage them.
No, I still don’t have it mastered, and I want my proverbial security blanket back.

Yeah, I still go poop and am one of the lucky ones. I can eat salad.
Yeah, I do wish I could have my colon back some days though.
No, I don’t regret having it removed. I’d rather have the least risk possible.
Yeah, that was probably me that farted.

No, I don’t like colonoscopies.
Yeah, I’m still going to tell you to get one until the day I die. You really need to get checked as you age or have problems.
No, they’re really NOT that bad.
Yeah, drinking that stuff and spending all night on the toilet is never fun for anyone. But suck it up and do it.

Yeah, I sometimes am saddened because I can’t have my own kids thanks to the surgeries and cancer treatments.
No, I don’t talk about it a lot.
Yeah, there is hope for us and adoption will be great one day.
No, we’re not ready for that yet.

Yeah, it’s frustrating to pay so much for medical care. Especially when other DINKS can do so much other fun stuff with their money.
Yeah, I struggle with that sometimes.
No, I don’t think we’ve got it as bad as so many others in the country.
Yeah, I feel blessed that we’ve been taken care of so far.

Yeah, I appreciate all of the comments about being strong and inspirational.
No, I don’t always know how to respond.
Yeah, I do feel like I’m still living in a fog sometimes. I don’t know if the impact of what I’ve gone through, what’s to come, or what’s looming over me some days really sinks in.
Yeah, the days that it does are hard. Thus, this post.

Yeah, I feel guilty sometimes when I see other survivors going through chemo or loosing their battles.
Yeah, I get jealous when others get clear results.
No, I would never wish sickness or this disease upon anyone. I truly rejoice at clear reports.
Yeah, I would trade it in myself if I could.

Yeah, I genuinely do still have hope most days.
Yeah, I think a long life ahead of me is definitely attainable.
No, my smile usually isn’t fake or fabricated.
Yeah, I’ve tried to find a way to embrace the aging effect and unique perspective all while acting my age.

Yeah, I’m typing this because today was a rough day.
Yeah, this blog helps and is therapeutic.
No, my day’s not all bathroom-related although maybe a little bit.
Yeah, it’s more about the emotional side of things tonight and what I have faced, and still face, hits me every now and then.

Yeah, I can’t do a post like this and not mention my faith.
Yeah, I think in the end, it’s what will really matter.
No, it’s not always easy for me to believe and trust that there’s a bigger plan and a greater world out there God’s created for us.
Yeah, I know it to be true though and that’s what gets me through.

May 4, 2010 at 9:52 pm Leave a comment

Reason #7 You Never Want Colon Cancer

Reason #7
Contrary to some myths, you do still have to watch your weight after you’ve had colon surgery.

Some people have told me that I probably won’t ever put on extra weight again since I have an “itty bitty” colon now. Although I’d love this side effect, it’s not true. The small intestine is the area that absorbs many of the nutrients (and not so nutrients) from food and sends them on their way to the rest of the body. The large intestine is basically a glorified clothes dryer that eliminates the water and bulks up the stool.

March 8, 2010 at 9:52 am Leave a comment

Reason #3 You Never Want Colon Cancer

Reason #3
You will inevitably fart during ab workouts. Every. Time.

If you’re colon’s been shortened or nearly removed, it gets harder and harder to hold in the flatulence as you’re crunching, twisting and turning all of the core muscles. When I go to the boxing gym, I try to stand around all guys so everyone assumes it was one of them.

March 4, 2010 at 12:50 am 2 comments

31 Reasons You Never Want Colon Cancer

Happy Colon Cancer Awareness Month! As a way to help bring even more awareness to the disease and why getting checked is so incredibly important, I’ve decided to dedicate every post in March to colon cancer awareness. But instead of telling you to get your colonoscopy, check your poop and know your family history, I thought I’d give you real, practical reasons about why you want to stay on top of your colon health.  Take it from me, prevent it while you can.

Reason #1
You’ll never save money on cheap toilet paper ever again.
Most colon cancer patients are sent into surgery to remove the section of colon containing the cancer. Once you’ve had part of your colon removed, your bathroom trips double, triple or more. After awhile, you get tired of the raw bum because the sandpaper stuff just isn’t cutting it. You’ll switch to the good stuff and never return again, saving your bum in the process but kissing your economical spending goodbye.

March 2, 2010 at 4:25 am Leave a comment

Dear Colon

Dear Colon,

Well, it’s been a rough week. We were doing so well, and off to a great start. You’d actually impressed me and many of my doctors. You’d been keeping up to speed with me and my busyness, and actually surpassed my expectations. You usually … hold … more than I expect, and have found a way to fade into the background most of the time. I know you still have the typical gas, bloating and “blah” moments pretty frequently, but I’ve found a way to look past those. My props genuinely go out to you. You’ve been doing so well.

But, as we both know, I’m writing you based on the past week or so. We’ve not been getting along, and these fits you’ve thrown now two times in one week cannot go on. Tonight’s little episode right before the birthday party was not cool, and I got your message loud and clear. You were unhappy, and you did something about it. And it’s gotten my full attention.

I realize that I’ve not been doing my part. I haven’t been resting well, eating great, nor managing my stress the past few weeks. But hey, we’re still trying to live as normal life as possible and that stuff happens. Plus, a girl’s gotta have a late night and a sprinkled donut with coffee in the morning once and awhile. I’m not asking for big things here, just a day or two where I can feel like the average 26-year-old who’s enjoying the life, friends and family God’s given her. Not the gal who’s life is defined by her colon … or lack thereof. I know it might be unreasonable to ask for all of that, but it’s where I’m at after a rough night.

I’m writing to propose a deal. I’ll do a better job of watching what I eat so that you don’t have to work so hard. You have gotten so good at keeping up with me, that I’ve forgotten how my diet really does impact you. I’ll rest up and work better at cutting down some stress, with one being exercise. But in return, I need you to cool it for a little while. Lay off the back pains and cramps, and start … holding … stuff again. Give me a little break and let me feel normal again, at least as much as possible.We have to work together, you and me.

Please don’t take this as disingenuous, and an attempt at getting what I want out of you. I am SO thankful you’re still here, even if you are itty bitty. You’ve been through a lot, and I will start taking care of you as well as I can. I hope you will do the same for me.

Love,

Danielle

February 28, 2010 at 4:44 am Leave a comment

Personal Health Update

I often get asked how I’m doing these days health-wise, so I thought I’d take today to give an update.

I pretty much am fully recovered and back to speed after my surgeries and hospital stays last June. It took a little longer than I expected to gain all of my strength back, but it’s rejoined me nonetheless. I’m back to boxing and doing Jillian Michaels’ workouts, which I’m convinced that if cancer won’t kill me – those surely will! Holy cow they are hard!

I was put back into the circuit of receiving checkups from my oncologist every 3-4 months after my diagnosis last summer, but so far everything has come back clear. My lab work is showing that my levels are normal, and my PET scan came back clean. I also had a CT scan that looked good. They did see a few spots around the liver that seem to be fatty deposits. They will keep an eye on them to make sure they’re nothing to be concerned about. I’ll have a follow-up CT scan sometime this summer, as well as an upper & lower GI scope.

I had an interesting time as I added another doctor to my “A Team” of physicians and began meeting with a geneticist. Because I’ve been diagnosed with colon cancer twice now and I’m not even 30, it’s highly suspicious that I have a genetic disorder. I was tested for “FAP,” but it came back negative. Back in the day when I was 17, M.D. Anderson suspected that I might have a disorder called “Lynch Syndrome” but testing couldn’t prove it. This past summer’s diagnosis raised suspicions again, as colon cancer appeared once more. My family and I were reevaluated and retested. While we would have loved to have concrete answers, we didn’t quite receive the certainty we were hoping for. But, reports were still clear and leaning toward there being a genetic problem, science just hasn’t caught up with us yet. I believe that my case has been left open to make us still have faith and hope. We can’t totally explain the two cancer occurrences, but we do know enough to try and stop them from happening again. The doctors have recommended that I be treated as someone with Lynch Syndrome so we can stay on top of the cancer risks and prevent it from returning the best we can!

Other than the frequent scans and more doctors appointments, life is pretty much back to normal. I still go poop (I’m asked that often!) – although because I have less than a foot of colon left, it’s much more often than others. I was very nervous about the foods I would have to avoid for the rest of my life, but it’s really not been that bad. Oils and heavily fried foods seem to be the worst, but I can eat almost anything in moderation – depending on the day, what else I’ve had to eat and my stress level. I’ve not had any more “IBS-like” attacks since my surgery (I was having several the month leading up to the big day) and generally feel pretty good if I watch my diet. As my blog shows, I have been eating more locally grown, organic foods to help me give me the best fuel and energy my body needs.

Of course, I still have my days now and then where I need to stay home, get extra rest, or stay close to the potty – but those are becoming fewer and fewer. I have a clearer understanding now than ever that each day is a gift, and feel so fortunate to be granted another second chance at a healthy life.

Thank you for your prayers and encouragement through all of this! As you continue to pray for me and my health, I also ask that you keep fellow cancer soldiers in mind who are undergoing chemo, radiation and other treatments to kill, or hold back their cancers. It’s a rough gig, and they need all of the support we can give. I pray that many others who are currently fighting will also have their health restored and positive health updates to give!

February 11, 2010 at 5:18 am 3 comments

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