Posts tagged ‘young colon cancer survivor’

Hi Ho Hi Ho, Off to Surgery I Go

Well, the big day is almost here once again.

Nope, not getting married. Nope, not expecting another kiddo to arrive.

I’m headed to surgery once again.

Why This Surgery?

Last October when I met with my OBGYN/oncologist, we reviewed my charts and updates over the past several years. As we talked, I explained to her that genetic testing has shown that I more than likely have a variant of Lynch Syndrome. After my second diagnosis with colon cancer at 25, we requested gene testing once again only to realize that many of my genes behave in a way that’s very similar to others with the disease. I don’t have the “traditional form” of Lynch according to tests and my family history (I’m still the only one with young colon cancer diagnosis.) But, between complicated stuff about MLH1 and PMS2 genes – it’s likely that I have some form of Lynch. Thus, the young cases of colon cancer.

Thanks to the testing I know that in the future, my risk for other cancers, namely ovarian and uterine, are also very high… almost likely. So, my doctor didn’t mess around when she realized I had Lynch Syndrome. She knew we’d chosen adoption as our path to kids. So with that, she gave the hard recommendation that I go ahead and have  a total hysterectomy. Even though I’m not even 30 yet. She didn’t push it on me right away, but said to look at my calendar and see if there was a “good” time to have this surgery done. And after several months of thinking about it and weighing the options, I decided to go ahead and do it.

Under The Knife Once Again

So, on this coming Tuesday I head under once again. I’m dragging my feet into this, but I know it’s something I need to do. The opportunity to stop cancer in its tracks and before it starts is why I’m doing this. Even if it does mean opening up my infamous long abdominal scar once again and putting me on a 6-8 week recovery plan. But, when I look at Mae, I know there’s really no other choice. I want to do all I can to stay around as long as I possibly can. So, off to surgery I go.

Unexpected Emotions

This has thrown quite a curve ball for me, since many unexpected (and honestly, many unwelcome) emotions have risen up. Maybe it’s because of counseling a few years ago, but suddenly I’m feeling the emotions that come with surgery and cancer threats. Or then again, this is the first time I’ve gone through anything like this as a mom – so that’s probably playing a part too.

Many thoughts, fears, realities, plans and “what ifs” have run through my mind this time…..

How do I line up childcare for Mae and arrangements for my small business?
Other surgeries haven’t been “easy” in the past – how long will I be out with this one?
How much extra can I work so that we can easily get that high deductible paid off?
How long will I really be recovering in the hospital?
By them “opening me up again,” will she find anything unexpected … like last time?
Will I have blood clots or problems with anesthesia this time?
How long will it take for my stomach to heal once again?
Will my past surgeries cause complications?
After surgery, what does menopause look like for me?
Will I be a sweat ball or hormonal wreck?
What are my risks of taking or not taking hormones?

And then again I too often camp on, “Why do I have to go through this in the first place?!?”

Coming to Terms

Typically, I’d tie up this post and show that there’s some peace and resolve that’s been found amidst life’s challenges. But today, I leave it at … I’m working on it. However, I knew a post was needed to get this off my chest. And, after looking through applications for other young colon cancer survivors for the 2013 Colondar this year – I know I’m not alone. Many others are being told they too have Lynch Syndrome. Many others will also face these hard decisions sooner than later.

Just pray for me Tuesday as surgery comes. Pray for a fast recovery. Pray this surgery STAYS preventative, and nothing else is found. And pray I’ll be back on my feet … and picking up my kid … in no time.

I’ll post when I’m back!

February 26, 2012 at 9:34 am 9 comments

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!

November 20, 2011 at 7:02 am 4 comments

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

October 2, 2011 at 9:00 am 1 comment

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

June 13, 2011 at 9:18 pm 4 comments

A Polypy Family

Last fall, our family tree had a bit of growth.

I’m not talking about more babies or marriages (although that did happen), but genetically speaking, we had some movement in the genetic family tree.

You see, for about 10 years now, I’ve been the odd ball out when it comes to this colon cancer stuff. I’ve had a great-aunt who was known for polyps and a few great-grandparents who supposedly had colon cancer, but nothing that really gave any doctors insight that my colon cancer diagnosis was a family thing. I’ve had to answer “no” every time I’ve been asked if there’s a family history of the disease. And while that’s still the case, things got a little more interesting a few months ago.

My Cousin Eric

Meet Eric

This handsome stud (sorry gals, he’s got a gorgeous wife) is my cousin Eric. He’s lives in Nebraska and texted me out of nowhere several months ago asking me about blood in the stool. I immediately was concerned, as that was my main symptom of colon cancer.

Genetic testing I underwent a few years ago indicated that my mutated gene (commonly found in Lynch Syndrome)  is most likely traveling through my dad’s side of the family. So, when Eric texted me (cousin on my dad’s side), I IMMEDIATELY told him to get a colonoscopy. Good thing his doctor was already headed there, or I would have driven up to Nebraska myself to make sure he got tested.

Colonoscopies Save Lives

Eric’s colonoscopy found that he had polyps growing in his large intestine. This young, twenty-something hunk (sorry again – he’s married, and actually has a baby on the way) indeed had pre-cancerous growths in his colon. Thankfully, they did a colonoscopy right away given his family history (sorry dude) and symptoms, and were able to remove the polyps safely. Now, Eric knows he’s at high risk for colon cancer and can get screened often to prevent an occurance.

Polypy Cousins

A Polypy Family

Don’t get me wrong, while this might seem like I’m excited, I’m bummed that Eric has to deal with this too – yet so relieved that he caught it early. There’s a suspension that a weird variation of Lynch Syndrome is running through our family, thus the importance of everyone getting screened. (That’s right you Ripleys who are reading this – get your rears CHECKED OUT NOW.)

If you are like our family and have someone who’s been diagnosed with colon cancer — and especially someone diagnosed with colon cancer UNDER AGE 50 — get yourself into a gastroenterologist and get your colon checked NOW.

It’s nothing to play around with.

April 15, 2011 at 4:17 pm 2 comments

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


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