Posts filed under ‘Colon Stories’
I’ve pushed this post away for a long time. While it’s no secret to many who know me that infertility is an issue I face as a result of my cancer treatment, I think the layers involved surprise us all. I tell my story for a few reasons:
– writing is healing
– others out there will be facing the same thing too
– there is a Peace that passes all understanding available to all
The story starts here. I woke up, somewhat foggy, to my parents gazing over me in my hospital bed. Although I didn’t expect to hear that doctors had found cancer again, the look in my parents’ faces wasn’t too convincing. The good news was that indeed, no cancer had been found on this second surgery that suspended my ovaries into my abdomen. The bad news was that the surgery itself, performed to save my hormone function before radiation, had just made me medically sterile.
My mom looked like she had seen a ghost. My dad looked so guilty. All the while the doctor reminded them that this was a life or death situation – she had to focus on saving my life at that point. My ability to create future lives was null. They were upset, but as they broke the news to me, my 17-year-old self wasn’t bothered. I was happy to be alive, and parenthood was so far off my radar. I figured that it was one less hurdle I’d have to deal with.
I lived with this perspective for many, many years. Even when I got married, Mike had been with me through all of this and was supportive. We knew what we were getting into (or not getting into) as we tied the knot and discussed family planning. We saw our situation as special and unique. We felt invincible. I was thankful for a testimony and a story of survival. We’d tell people that we were planning to adopt one day when asked about kids. We “high-fived” over the fact that I’d never have to be pregnant. It was our special treat, all until it started to hit me one day.
Whether someone has faced infertility because of cancer or not because of cancer, the emotions are the same – they just come at different times. As we started to research options for adoption a few years after we were married, I took notice of how many agencies addressed the emotions tied to infertility at the beginning of their orientation meetings. Early into the process, I would shrug it off and feel so thankful (and unfortunately prideful) that I didn’t have to go through the pain of infertility – the feelings of mourning, loss, depression, jealousy, and oh so many other monsters. I knew early on that I was infertile, we skipped the years of trying with no result. But as the years have gone on, our personal family tree has grown, and many friends have maxed out our church nursery’s capacity, I’ve begun to understand the stories I once saw on those adoption orientation videos. I am no different. My invincibility has slowly slipped away. I’ve realized that nobody who faces infertility is immune to what comes with it.
As our journey to parenthood has become something that we really consider and start to want, we’ve had to face some big issues. I’ve had to drop my pride and acknowledge that I do feel the sadness and grief when it comes to this issue. While I’m not particularly devastated that I can’t carry my own child physically, I do get sad sometimes when I think about how we’ll miss out on the experience in general. The “she looks like you,” or “when are you due?” or “feel him kicking here,” comments will never be guided our way. And while in complete honesty that IS hard on some days, I have come to find one thing that helps.
Sinners become free when they accept Jesus and recognize their sin. Alcoholics become sober when they recognize their addition. And as an infertile woman, I’ve found so much healing in identifying and recognizing one big word: LOSS. For so many years, I’ve tried to be Super Woman and let all things bounce off me. And in a way, you have to do that if you’re going to get through surgeries, treatments, scopes, scans, and more surgeries. I thought it worked the same way with emotional issues such as infertility. But I’ve thought wrong. I can’t be bullet proof toward everything.
I’ve finally come to terms and accepted that I feel loss over this issue. A loss that isn’t only mine, as I know that our families have to feel some of this loss too. And while it is sad, it is hard sometimes, and it’s downright frustrating, accepting our situation has helped me start to pick my head up and look forward to what’s ahead. We do have the opportunity for a very unique path to parenthood. I don’t have to go through a physical pregnancy to become a parent. And in the meantime until that day does come, I get to be Aunt B to so many kiddos who touch my life in such special ways.
I share my story not to gain pity nor admiration, but to be honest with one of the deepest-level issues that my cancer has touched. I don’t talk about it much in person because it’s hard to know what to say. It’s not like someone has actually died, yet in a way the emotions are still the same. Plus, the last thing you want as an infertile person is to make a fertile person feel guilty. And while that seems silly, it’s more common than not.
I can’t really tie this up with a pretty bow and say that the issue is dealt with, and I face it no more. But I do share that I’ve come through the phases of indifference, then denial, then mourning, then jealousy, then bitterness, then sadness, then accepting the loss, and now to looking forward to what’s ahead once again. I know that at any point I might jump back into a former phase and have to work through it all again. And while it’s a battle that I continue to face, I know that just like the scar running down my abdomen, the pain associated with it will fade over time.
God’s got big plans for us. I know that with all of my heart. And while some days might be an emotional bump in the road, I still hang on to the knowledge that all of this is part of His perfect plan and has happened for a reason. One day, this will all make perfect sense, and I wouldn’t have had it any other way.
A quick answer to questions I am asked often:
– Yes, we COULD TRY TO have our own biological children if we chose extensive infertility treatments. We’re uncomfortable with this high-risk, pricey option and have always planned to look into adoption.
– Yes, I still have a period. Moving the ovaries up saved the function, just made the natural path of the egg longer, thus making it (near) impossible to conceive naturally. The surgery was successful in moving the hormones. No, the surgery cannot be reversed, and if it did, it would be more extensive than trying to extract the eggs would be.
– This was almost 10 years ago. Now, many doctors encourage young patients to preserve eggs before treatment. I think enough awareness of survivors losing fertility post-treatment has helped people now facing similar situations. I would recommend to anyone who is younger and of child-bearing age to consider preserving eggs/sperm before treatments. You don’t have to, and search your heart and what you feel about it. But – I recommend at least exploring the options and being confident in a decision you make – not a decision that is made for you.
October 16, 2010 at 11:03 pm Danielle B
I recently completed a course called “The Seven Levels of Healing” hosted by my oncology office, Kansas City Cancer Centers.
I was initially introduced to the 7 levels class by my treasured Nurse Kim. Actually, the last conversation she and I ever had was about this class. She lit up the room with excitement and hope as she talked about the opportunity to offer this course to all of KCCC’s patients. She had gone through the class herself and absolutely raved about it. After that day, I was sold, but had not signed up yet. After her sad departure from this world, I knew I had to go through it and not wait another minute. Not only had I been facing some issues that the class could help me with, but it was a way to honor my friend and keep her work going.
When I signed up for the class, I was nervous, excited, and clueless about what was to come. I saw a counselor this summer for several weeks and was curious if the class would cover the same topics. It did cover some of the same topics, but offered me a totally unique and surprising experience that I could have ever imagined.
The course is broken up into seven levels:
1. Education & Information
2. Connection with Others
3. The Body as Garden
4. Emotional Healing
5. The Nature of Mind
6. Life Assessment
7. The Nature of Spirit
Each week offered me a new perspective on how to handle life with cancer. I walked away realizing that my body is a garden, not a machine, that must be carefully tended to. I was reminded about the power of our thoughts, and of unharbored bitterness and forgiveness. I had a host of others cheer lead me through some frustrating test results one week, and I was faced with the uncomfortable situation of thinking about my personal bucket list. I was encouraged that the secular class covered the role that the spirit plays in our physical healing.
This class was absolutely fantastic, but what was even more awesome was the group that I went through the class with. As a teen survivor, I have not been one to jump on the “support groups” train in the past. I have never been against them, but avoided them as I knew I’d be by far the youngest person in the room. Now that I’m in my twenties, I am still usually the youngest person in the group, but there’s often a thirty or forty-something in there with me. And while age has held me back from joining groups in the past, this experience quickly taught me that age doesn’t matter when you’re dealing with cancer – all of us could relate with one another in a deep, very emotional way. Like many of my experiences with the Colon Club, this group of a dozen strangers or so quickly became close friends over the course of seven weeks, and I pray we continue to keep in touch.
I am thankful for the Kansas City Cancer Centers for offering this class. It really did feel like my doctors and nurses were giving back to me in a way. It was of no charge to me and my husband was able to come with me, too. It was led by two nurses who, like my Nurse Kim, believe in the program so much, they volunteer their time to lead the group. It is informative, impactful and mind-altering. It’s helped me view cancer not as a monster hiding in my closet, waiting to strike again – but as a beatable, manageable disease that comes with a lot of support from others who’ve also been through it. If you’re in the KC area and diagnosed with the Big “C,” I strongly recommend checking out this class at KCCC. It will help you heal in ways you had no idea you were hurting.
October 6, 2010 at 5:35 pm Danielle B
Last week, I came home to a big surprise. Laying on the bathroom counter was a thick, crisp cookbook. I didn’t give it much thought at first, thinking my husband had borrowed it from his mom, who’s a FACS teacher, and left it on the bathroom counter after some “leisurely reading.” Looking back, I realize this makes no sense, however, in the moment that’s what I thought.
But, after a few minutes I realized that this brand new book positioned in a spot that I would quickly visit once I got home was a surprise gift for me. Cooking is something that I enjoy but do not do enough. I also happen to LOVE reading through cookbooks. So, to help bring some “joy” back into my life, he went out and bought me “The Joy of Cooking.” He’s clever, I know. I was honored that he went out of his way to bring me a creative gift to help bring some pep back into my step.
I immediately started thumbing through the book and a recipe for extra crispy fried chicken caught my semicolon eye. Now normally, I avoid fried foods at all costs, and especially fried chicken. But something sounded particularly delicious about this meal on that evening, and so I decided to go for it. I didn’t have anywhere to be later that night, we nor the following morning – so I was in the clear to let it all … clear. Plus, we were looking for a really fun date night idea.
The following pictures show the cooking extravaganza that followed. We didn’t stop at the chicken, we added homemade biscuits, mashed cauliflower and zucchini gratin to the mix as well. And I do have to say, it was an absolute blast.
A note and disclaimer: I still stand by my decision to prepare and make this meal at home. In the future, I intend to stick with my plan of eating a meal that resembles anything like this at home for, er, obvious reasons.
Another quick note: I know fried foods are bad for you. But it was really fun to let loose for just one night. I tried to make up points with the (organic) mashed cauliflower, though. Just ignore the half-and-half that made them fluffy.
July 8, 2010 at 11:15 pm Danielle B
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 Danielle B
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 Danielle B
On the first day of my chemo treatment, I made a comment to Nurse Kim about the need for scholarships for teens who survived cancer. I figured that little kids with cancer get to go to Disney World for free, the least someone could do for older teens was to help send them to college. Well, Kim started her research and found the American Cancer Society’s “Young Survivor Scholarship.” I applied and was awarded funds each semester for my undergraduate degree.
I’ve been forever thankful to Nurse Kim, as well as ACS, for providing me a scholarship to go to school and live a full life post-treatment. It’s been almost 10 years (I know, I can hardly believe it too…) and I’m excited to see other non-profits and groups catching on to what ACS helped provide for me as a young survivor. There are many additional programs out there these days for assistance with tuition for cancer survivors.
I’m not sure if I have many teen survivors who check out my blog, or those who’ve survived cancer hoping to go to school, but if you know of any, I’d encourage you to pass this info along. Many of the deadlines have passed for this year, but keep it in mind for the next if you’ve got a sophomore or junior on your hands! (Thanks to the SAMFund for notifying me!) I’m sure there are many others too, here are just a few that I’ve learned of recently….
The Kyle Lee Foundation provides financial assistance to college students who have survived cancer, especially Ewing’s sarcoma.
The Ryan Mulally Second Chance Fund awards $1,000 scholarships to individuals 22 years of age and younger. Priority is given to students still undergoing treatment, those with permanent effects from treatments and those at the beginning of their post-high school education.
The National Collegiate Cancer Foundation is currently accepting applications for their $1,000 tuition scholarships.
Working Against Cancer’s Survival Scholarship Program assists young adult cancer survivors (ages 30 years and under) by providing awards toward academic and vocational education.
American Cancer Society’s Young Survivor’s Scholarship. Google it for specifics regarding your state!
June 7, 2010 at 2:03 pm Danielle B
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 Danielle B
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.
April 28, 2010 at 9:34 am Danielle B
Reason #31
You just don’t.
Good reason, huh? Sorry for the tardiness of my last post. I didn’t quite get to it by the 31st, and the last thing I wanted was for it to be an April Fools joke!
For my last reason though, I thought I’d take the liberty and ask everyone to take me seriously for a second and just trust me on this one. I’ve had a blast shedding some light and humor on what some of us who’ve been through the colon cancer ringer go through. Instead of sounding like whiney babies all of the time, most of us make the most out of it and find a way to laugh about some of the things we go through… most days. Hopefully you’ve been able to laugh with me and get a new perspective about life without colon!
But on the serious side, I ask that you also take to heart some of the pleas to prevent colon cancer if you can. I’ve said it before, but being a cancer survivor is a double-edged sword. On one hand, it’s given me a passion for life and health that I wouldn’t have had otherwise. I’ve got a perspective that’s unique, and I would not trade it for anything.
But, with that being said — I would absolutely go back and prevent getting the disease if I knew I was going to get it. Living without a colon isn’t always fun, and pretty annoying some days. I’ve given 31 reasons why it’s often inconvenient, and there could be many, many more. And these are the ones that are post-able.
My plea today is this: if you can, prevent getting colon cancer. It’s one of the most preventable, beatable, and treatable diseases out there. If it runs in your family, keep an eye on your poo and your body. If you’re over 50, get a colonoscopy – just do it. If you see blood or anything suspicious in your stool, get it checked out. You may be 17, or you may be 60 — but my story shows that regardless of your age — it’s beatable, and especially if you catch it early. Don’t wait until it’s too late. Take it from me.
April 2, 2010 at 12:28 pm Danielle B
Reason #30
You will think talking about colon stuff is the coolest thing ever.
I don’t know if the facial expressions of others when they hear you talking about farts, poop, colons or toilets will ever get old. They’re classic.
March 30, 2010 at 11:05 pm Danielle B
Older Posts
Newer Posts
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.
Semicolon Stories 