The ripple keeps expanding...

What started as dipping my toe in the water has continued to grow, much like the ripple caused by a pebble tossed into a pond.  I knew I wanted to try to bring more awareness to Lynch Syndrome and colon cancer, but wasn't quite sure how to go about doing it.  Through my involvement with Colontown, Chris4Life and the Colon Cancer Alliance the opportunities keep coming.

In March am returning to Washington DC. This time with the Colon Cancer Alliance and Fight Colorectal Cancer to "Call on Congress" about early intervention and screening for colorectal cancer, quality treatment options for patients and funding for research.

As the leading advocacy group, Fight Colorectal Cancer serves as a resource for colorectal cancer patients, grassroots advocates, policy makers, medical professionals and healthcare providers.

For this event I will have two days of advocacy training before spending the third day on the "Hill" visiting the offices of my representatives and senators. At the end of the third day is a celebration/awards dinner and ceremony.

I applied for and was awarded a scholarship through Fight Colorectal Cancer, which will cover my hotel stay and part of my airfare.

Any additional financial contributions made will help to offset various travel expenses (airport parking, baggage fees, transportation in DC, meals, etc.) associated with my advocacy work.             Colorectal Cancer Advocacy 

I do this for my family, but also for the many friends who have beaten colorectal cancer are currently fighting for their lives, are gracefully accepting the end of their life, and for those we now remember with both sadness and a renewed determination to make a difference.

Falling behind and catching up

No doubt everyone is crazy busy this time of year and our family is no exception.  Three days each week I am up at 3:40 so I can work my seasonal job and be done in time to get the kids after school.  Mike picks up the slack in the morning and gets them fed and to school.  It's chaotic and we have to remind ourselves that it only lasts a month or so and the little bit of extra cash is always helpful.  I was reminded of the deadline for two online college courses one week before they were both due.  Grateful for the reminder and thankful my family understood my need to disappear in the evenings to get them done.

Throw a stomach bug into the mix of snow, shoveling and shopping and it's a good time for everyone.  

Last week Cal had what appears to have been a 24-hour thing.  Vomiting, low-grade fever  and lots of sleeping.  As a parent I hate to see my kids feeling lousy.  It's normal to be concerned and I'm grateful I had some time off I could use to be home with him.  After missing one day of school, Cal was pretty much back to normal.  

Fast forward one week.  Now Mike feels like crap.  Immediately my mind is wondering if it's more than the stomach thing.  Is whatever this is, Lynch related?  Is there cancer somewhere?  I'm not obsessing over it, but I'll admit the thoughts are there.  He hasn't slept well in over a month now this.  I keep looking at him for signs of something more serious.  Three and a half years ago when we first found out he had cancer, it hit me hard that I hadn't noticed how sick he really looked.  When you see someone day after day you don't always notice the gradual changes.  I look now.  A lot.  He's pretty cute anyway, so it's not exactly a hardship.

Now that it's been a few days, Mike is feeling better and there has been more confirmation that a stomach bug has been going around.  He still isn't sleeping great, but at least the worst of the intestinal stuff seems to be getting better - or not worse anyway.  

It has taken me 4 days to write this post and I haven't even begun to sort out how to write about my last trip to Washington DC.  I can't believe Christmas is less than one week away.  How did that happen?  No time to make Christmas cookies this year either.  I think we'll survive.  I'm looking forward to 1:00 tomorrow afternoon when I walk away from my seasonal job for another 10 months.  Maybe then I can start to feel like I'm actually catching up.

Lynch Syndrome, Facebook, and Washington DC

In no way could I have ever imagined that 3.5 years after Mike was diagnosed with colon cancer I would be heading to Washington DC with a group of nearly 40 other people from around the country.  None of whom I would have ever met if it weren't for Facebook.

Following Mike's diagnosis of Lynch Syndrome, I spent countless hours online searching for information.  At some point a Google search brought me to Colontown.  Little did I know that one click of "Like" on a Facebook page would provide so much information and support.  In "Lynchville", a neighborhood of Colontown I found other people living with Lynch Syndrome either personally or because someone they care about has it.  Some had been through an unbelievably difficult time and came out swinging and ready to fight - in a positive way.  Regardless of the journey, the overwehlming "vibe" is one of support, compassion, humor, honesty and love.  It was easy to feel at home.  

Meeting people online is obviously not the same as in person, but you still build relationships.  Close relationships.  Many of the people I will never meet.  Others I met at the Lynch Syndrome conference in Minneapolis in September.  This week I will meet many others as we invade Washington DC to advocate for medical imaging and radiation therapy services.  Seeing so many people I already feel a connection with who all share a desire to make a difference is huge!

With Veteran's Day yesterday and flying to our Nation's capitol today I have an overwhelming sense of gratitude to those who have fought so that we have opportunities like this.  We live in a country where we are encouraged to meet with Congress and tell our stories.  For policy makers to hear first hand from those who's very lives (or the lives of loved ones) depend on getting the right scan at the right time.  Affordably. 

Obviously, our government is not perfect. After all, it's run by human beings and Lord knows none of us are perfect.  But, will our group make a difference?  Absolutely.  Will we know what kind of difference we are making?  Maybe.  Will I be changed by this experience?  I'm counting on it. 

My Daughter

One of the reasons I want to do all I can to keep my family safe and healthy.

Dear Zoey,

How is it possible that you are 8 years old! For 8 years I have watched you grow from a helpless baby who relied on me for everything, to a toddler who didn’t know the meaning of the word “can’t”. As far as you were concerned nothing was going to stop you or even slow you down. The fact that you might be too young or too small never occurred to you.

I still see so much of that in you and I hope you always remember you are capable of amazing things. I also see more uncertainty in you as you spend less time at home and more with friends, activities and school. So many things out there that can make you question yourself. Don’t ever forget who you are. You are smart, strong, thoughtful, compassionate, beautiful and funny. People want to be around you because of who you are and how they feel when they are with you. You feel things strongly, which in turn means your feelings are more likely to be hurt. Don’t let that stop you from being the kind and generous girl you are.

I promise to be honest with you, even if what I have to say makes you angry with me.
I promise to learn from you. After all, I make mistakes too.
I promise to do whatever I can to help you follow your dreams.

I promise to love you always and forever, no matter what.

Mom

Right Scan Right Time

How Cool is this!!!

FOR IMMEDIATE RELEASE

November 05, 2013

Dodgeville Resident TRAVELS TO WASHINGTON, D.C. TO CALL ON CONGRESS

TO PROTECT ACCESS TO MEDICAL IMAGING AND RADIATION THERAPY

Dodgeville, WI – Next week, Heather Dampf, a resident from Dodgeville will join more than 50 fellow patient advocates from across the country in Washington, D.C. to call on Members of Congress to protect patient access to life-saving medical imaging and radiation therapy services.  

“As the spouse of someone who has survived colon cancer and lives with Lynch Syndrome, I know first-hand how important it is for patients to have access to the right scan at the right time,” said Heather. “I want to make sure Congress does not forget the critical role medical imaging and radiation therapy plays in early diagnosis and treatment of countless diseases.”

Upon arriving in D.C., advocates will attend an Advocacy Academy to familiarize themselves with one another and the messages they will be delivering to their Members of Congress. The following day, advocates will go to Capitol Hill to deliver those messages, urging policymakers to reject misguided, harmful policies that would threaten patient access and undercut the benefits of early detection. Advocates are hopeful that, in hearing real-life patient experiences in person, policymakers will be moved into action to protect patient access to medical imaging and radiation therapy technologies.

In these meetings, advocates will stress the importance of Congress rejecting recurring cuts to Medicare reimbursement for medical imaging and radiation therapy services, which have been slashed thirteen times since 2006. They will also urge Members of Congress to hold the Centers for Medicare & Medicaid Services (CMS) accountable for ensuring high-risk or symptomatic beneficiaries have full access to important diagnostic tests. Finally, they will urge policymakers to reject the use of Radiology Benefits Managers (RBMs), which can delay or deny access to medical imaging services, in Medicare. 

Medical imaging has proven vital to detecting, diagnosing and treating cancers and other deadly diseases that touch millions of Americans. Researchers have found that at least 40 percent of the decline in cancer mortality is due to diagnostic imaging innovation.

The Capitol Hill Fly-In was convened by the Medical Imaging & Technology Alliance (MITA) through its patient advocacy and survivor network, Right Scan Right Time, in partnership with advocacy groups COLONTOWN, Chris4Life, Lung Cancer Alliance and YES! Beat Liver Tumors.

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 The Medical Imaging & Technology Alliance (MITA), a division of NEMA, is the collective voice of medical imaging equipment, radiation therapy and radiopharmaceutical manufacturers, innovators and product developers. It represents companies whose sales comprise more than 90 percent of the global market for medical imaging technology. For more information, visitwww.medicalimaging.org. Follow MITA on Twitter @MITAToday.

Advocate? Who Me?

Over the last year or so I have become increasingly active about getting the word out about Lynch Syndrome and I have an amazing opportunity coming up in just a few weeks.

When I started on this journey just over 3 years ago I was lost.  I started my blog because I could find no information about people going through what we were going through.  Blogging was a way to get some of the stuff "out of my head".  When I discovered people who didn't even know me were reading it, I was floored.  Obviously, I wasn't the only one.

Never in a million years did I think Facebook would be more than just a way to catch up with friends.  Then I stumbled across "Colontown - Where Experience Reaches Out".  Erika Hanson Brown, Mayor of Colontown,  has made it her life's work to reach out to other people who are experiencing colon cancer and other "colon related" issues.  Over time I have been more and more involved with Colontown and am a co-administrator for the Public page of Lynchville, a Colontown neighborhood.

This past weekend Mike and I attended Mayo Clinic's Living with Lynch Syndrome conference in Minneapolis.  We had gone two years ago just after finding out Mike had Lynch.  There were maybe 60 people in attendance.  This year nearly 200!  Word IS getting out about Lynch Syndrome.  Unfortunately, there are still only about 5% of the Lynch population that actually is aware they have Lynch.  The conference was a good refresher, although emotionally draining.  The world became a little bit smaller for a day as I met my Colontown friends in person for the first time and we talked with people who really understand what it is to live with Lynch Syndrome.  Or to be someone who loves a person with Lynch Syndrome.

Lynch Syndrome is a part of our life and it always will, but it does not define us.  It is not a life-sentence, but rather an explanation for something that seemed so unbelievable.  A healthy 37 year old getting colon cancer?  It makes sense now.  Unfortunately there are a variety of other cancers Mike is at a higher risk for, but annual scans and other screenings will keep us one step ahead of cancer. 

Patient Advocacy

March 22 - Lynch Syndrome Awareness Day

In my last post I was wondering what else to do to bring awareness of Lynch Syndrome.  Since that time our Mayor, Todd Novak, signed his first proclamation in support of March 22 - Lynch Syndrome Awareness Day.  The newspaper also did an interview with me for more information and I was asked to be an administrator for Lynchville, which is a part of Colontown on Facebook.

I also distributed fliers to the hospital and clinic in town from Lynch Syndrome International.  The number of people who have approached me either because of the article in the paper or because of something I posted on Facebook has been exciting.  Even Cal took information to share at school and the parent of a classmate asked me for more information.  

I love that my small town is so open to learning more about Lynch.  The more people are aware of it, the more lives that will potentially be saved.