Head to the Hill for Brain Tumor Awareness

A week ago today we were walking the hallways of  our nation's capitol as part of National Brain Tumor Society – Head to the Hill.  Actually it was the underground passageway to and from the Representative buildings to the capitol. 

My fellow Florida constituents, as we were called, met with Congressman Miller from district 1 (our district) and then we met with Ileana Ros-Lehtinen district 27.  Meeting in the Rayburn Room of the Capitol was a highlight. 

Both representatives appeared moved by our stories and listened intently to our asks for NIH funding and to vote for HR 1801.  I will include a link to this information.

http://www.braintumor.org/news/latest-nbts-news/head-to-the-hill-advocacy-day.html

 

This experience was after meeting with the Senate staffers for Marco Rubio and Bill Nelson.  Each of these staffers remembered Ron and I from last year.  Yes, my Mom was correct, people are going to remember you no matter where you go.   We had left behind a copy of our book and perhaps they remembered that also, when I handed them another copy.  They seemed supportive this year, more than last because of it being post-election and both want to get some work done.  Not shy at all I asked that they work together to get a bi-partisan bill introduced similar to HR1801.   Can’t hurt to ask. 

  

It was such an exciting few days.  Sunday we volunteered at the Race for Hope, DC.  We felt more comfortable with the logistics because we had attended last year, 2012.  This year we wanted to help out and volunteer in the survivor tent.  We handed out yellow balloons and monitored the traffic flow leaving the tent where David Cook did his meet and greet. 

The walk to the starting line was memorable and tears flowed.  We followed a wee little one walking with her parents and the contrast hit me.  Here I was with Ron a 21+ year survivor at 54 and this wee one just beginning her journey.

This entire event really hits home and is a reminder of how fortunate I am.  The many years, waiting for MRI results, the surgeries, the therapy, and the adaptation to life as we know it seem such a blur. But seeing newly diagnosed and the folks walking in memory of a loved one moves me to continue my advocacy.  I have chosen the path of sharing our story and speaking out in support of all those who can’t. 

 

We had a chance to meet a great group of folks from Arizona and they walked with Ron as I stayed behind to complete my volunteer duties.  Our new friends from Arizona have lost sons and husbands and have banded together to raise awareness.  This advocacy spirit is contagious.  We all have a common bond that is irreplaceable.

 

I have been told so many times that once you find folks who “get it” you are friends for life.  As I meet new folks the circle widens and together we can impact DC and be proud to stand together for government change.  Every person I know has been impacted by cancer in some way and it should be easy to understand our passion.   I believe there is something you can do to honor those who are fighting or have fought this battle.

 

We left Washington DC hoping our voices were heard and will be watching the news closely for those changes we asked for.   If you happen to find yourself asking what can you do?  Join me and make a change.  At minimum sign up to be an advocate for NBTS.  You’ll get an occasional e-mail with updates and request to contact congress.  Simple.  If you want to join us next year in DC, let me know and we can all Head to the Hill.

New caregiving perspective, sharing Hope with Dad

I am long overdue for a post.  Back in October while attending the NBTS summit I was distracted by the recent diagnosis of cancer in my Dad.  At that point I was on the roller coaster of emotions.  The trip to Boston allowed me to see him for a short time and give him a long overdue hug filled with hope.  My hope was that this new cancer would be treatable and that Dad would get some relief from his pain.  I returned to Florida with mix feelings and an overwhelming list of questions.  How can a 83 year old navigate this maze we call health care?  I have been the captain on our own ship for 21 years navigating some stormy seas with Ron.  How can I help Dad now that he clearly needs someone.  My siblings and his friend were doing their best, getting him through tests and doctor appts.  I would provide questions to ask, observations to make over the phone.  Not seeing him and assessing myself was so stressful. After a second report that he had doubled up on his meds did I know I needed to make the long drive to NH.  Knowing his pain was still not under control and that with chemotherapy starting, the regime would get more complicated I knew in my heart where I needed to be.  The details of where we would stay and the logistics of my work from home, well those details did not seem to stop us.  I have to admit I was counting on tons of hope.
Hope prevailed.  We have taken up residence where angels in our midst have shared their homes.  I have not missed a doctor appointment or chemo day for Dad.  Having his med list available and updated for each appointment seems to set his mind at ease.  Observing and assessing any new symptom to report to doctors is such an innate task to me and Dad is ever so grateful.  His gestures, sparkle in his eyes and repeated thank yous fill my heart with such contentment.  I know I am where I need to be.
But I am left wondering what do other folks do when navigating the maze?