Thursday, December 19, 2013

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.

Tuesday, November 12, 2013

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. 

Friday, November 8, 2013

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.


Wednesday, November 6, 2013

Right Scan Right Time

How Cool is this!!!

November 05, 2013

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.
 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, Follow MITA on Twitter @MITAToday.

Tuesday, September 17, 2013

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

Monday, March 25, 2013

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.

Wednesday, February 20, 2013

Feeling the need to do something

Every now and then life slows down and I am again reminded about how much our life is affected by Lynch.  It's not like we live in constant fear, but it's more like an awareness of something lurking in the shadows that really never goes away.  

As March approaches, so does Colorectal Awareness Month and there is a push to make March 22 Lynch Syndrome Awareness Day.  Many Governors & Mayors have signed proclamations of support, yet there is still so much education to be done.  For my part I have contacted our small town Mayor and submitted a "Letter to the Editor" to our once weekly newspaper.  Still, it doesn't seem like enough.  Being in a semi-rural area of Southwest Wisconsin resources feel limited.  The fact that nobody in Mike's immediate family has been tested is also frustrating.  One uncle and his daughters have been tested, but not one of Mike's three siblings. I still deal with anger about that.  Even my son at age 9 doesn't understand why someone wouldn't want to be tested and find out for sure.  

I think we are doing the best we can with screenings for Mike and the fact he no longer has a colon relieves a bit of that anxiety.  However, I can't help but think about how fast Lynch cancers can come up and sometimes it's difficult to push that fear aside.  Especially because it concerns my best friend and father of my kids.

Wednesday, January 16, 2013

Just Stuff

No idea what the title for this post should be as there are so many things going through my mind and my heart.  For so long I can go about life and hardly give Lynch Syndrome and cancer a thought.  Then there are the things that come up to remind me of how much this really does affect my life every single day.  Even though I don't have LS, three of the people I care about more than anything else in this world either have it or have a 50% chance of having it.  Is that rash Zoey has related to Lynch?  Are those digestion issues Cal has on occasion because of Lynch or because he is an almost 9 year old boy?  Nearly every little childhood blip makes me wonder. 

Cal has been asking about being tested.  We have been honest with the kids, but only give them information as they ask in a way they can understand.  Cal said he can't believe someone would not want to find out if they have Lynch.  He's a smart kid.  I think because Mike came through everything so seemingly well (and doesn't complain about much of anything) the kids don't have a real fear of cancer.   Mike was fortunate enough to not have to endure radiation and chemo so the kids never saw their Dad "sick".  Hurting from surgery, yes, but not sick.

Now Mike has cellulitis.  While not related to Lynch Syndrome, it is because of LS that it happened.  Following his subtotal colectomy in December of 2011, he developed a rash on his finger.  Likely due to a reaction the adhesive used for the "pulse ox".  The rash progressively got worse, extending down his finger yet the reaction from the various doctors he saw was always "Oh, that's weird.  Not sure what that is."  Various topical solutions have been tried, but the issue continued to get worse. This week he woke up with severe pain in his arm that began to travel down his arm and then developed a rash that ran the length of his arm.  Now he has strong antibiotics and an oral anti-fungal medication.  If he does not have an improvement by Friday he will likely need an IV to administer the antibiotics. 

It doesn't help that I've been missing my Mom a lot lately.  I really want to talk to my Mom when stuff like this happens.  Then last week I watched a grandma walk around a track with her young granddaughter as she practiced roller blading.  It's simple things like that which can suddenly make me so sad thinking of what my kids are missing out on. 

I know there are others who are suffering with so much that I feel petty complaining about this stuff.  I also know if I don't "let it out" constructively, my family will be the ones to have to put up with me.