Wednesday, December 8, 2010

Opportunity to make change.

This morning I got up very early to fly to Washington DC and day one of three days of panel discussions as a consumer reviewer for cancer related research proposals.  This is an amazing opportunity that I was nominated for by The Lymphoma Research Foundation and I thank them for that.  I am here with other consumer reviewers (cancer patients, survivors, and caregivers) as well as scientific reviewers (doctors and scientists).  We have all come together to review, discuss, and vote on grant proposals that are geared to learning more about cancers and finding ways to cure them or make facing them at least a little bit easier.

Tonight at dinner I was one of three consumer reviewers to lead the whole roomful of people in a moment of silence.  Each of us was selected from each of the three types of panels that are represented here.  We were asked to speak briefly about our story and why we are here.  The goal being to remind all those in the room the importance of what we have gathered here together to do.  For a few moments we were each able to put a face to the reason we are voting on these proposals.  I have included the short speech that I gave below.  For those of you whose names I have included or whose family members were included I hope that was ok.  It meant a lot to me to be able to honor each of the people that I names.


Moment of Silence
 Wednesday, December 08, 2010

Lindsay Berghuis, Leukemia.  Chris Henderson, Squamous Cell Carcinoma.  Melissa Etheridge, Breast Cancer.  Joe Mitchell, Prostate Cancer.  Michael Douglas, Throat Cancer.  Patrick Swayze, Pancreatic Cancer.  Francis Dow Hamblin, Lung Cancer.  Joshua Ragsdale, Leukemia.  Grant Gratton, Non-Hodgkins Lymphoma.  Elizabeth Edwards, Breast Cancer.  Some of these names are familiar to you and some of them are not, but each of these people and their families were challenged with a cancer diagnosis.  Some are still with us, and others are not.

My name is Elizabeth Hamblin Naylor and cancer gave me two birthdays.  I was diagnosed on October 16th, 2009 with Primary Mediastinal Diffuse Large B-Cell Lymphoma.  At the time my daughter Grace was two years old, and my husband Adam and I had been married for 6 years.  We were planning on putting our home on the market and I was hoping to buy a new car.  Plans changed.  I had a softball sized tumor in the right center of my chest.  At this time the tumor was pushing through my chest wall and although it wasn’t totally visible to others, I knew it was there and can’t say I loved the everyday reminder. 

I tried three different types of chemotherapy without any success in fighting my disease.  The first chemo was R-CHOP and we were assured that given my age and health it would be successful.  It only took two rounds to know it was not working.  The second chemo was RICE and again only two rounds in and I was getting worse.  In addition to the tumor in my chest I had also developed a tumor that essentially encased my right kidney.  My third type of chemo took us from our home outside of Boston to The National Institute of Health, in Bethesda, Maryland.  I signed on to a research protocol and although the team was optimistic at the start, after two rounds there was no change in my tumor. 

It was time to decide where to have an allogenic stem cell transplant.  In April of this year, after being told by the transplant doctors in Boston that while they could do the standard transplant, they were not confidant that I would even survive the process, I signed on to another research protocol at NIH.  These doctors were confidant and felt that their transplant could and would save my life.  My family and I found ourselves moving to Bethesda for the next four months.  Being so far from home was difficult but I am grateful to have made that decision.

Today, 8 months post transplant, I stand before you in partial remission with no sign of cancer activity in my body.  I am a survivor.  And as a survivor I have the chance to continue being a mother, a wife, a daughter, a sister, a friend.  I have the opportunity to make a difference in the world by participating in programs such as this one.  Cancer research and funding for this research is, for obvious reasons, something that I believe in with all of my heart and with my life.  The research protocol that I am a part of has been around for six years and is now in its fourth version.  I am the 90th person to be a part of this protocol and the 10th person to be a part of this particular version.  Each time I am scanned and the scan shows no cancer activity my team of doctors and nurses are both excited for me and excited for their research.  Not only did this research save my life but my participation will help countless other patients in the future.

My name is Elizabeth Hamblin Naylor and on May 4th, 2011 I will be 32 years old and on April 6th, 2011 my immune system and healthy body will be1 year old.  Cancer gave me two birthdays.

Please join me now in a moment of silence to remember those who have been diagnosed with cancer, their caregivers, their friends, and their families.

3 comments:

  1. Thank you, Elizabeth. That truly means a lot to me and my family.

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  2. What a great opportunity. I hope you are warm, happy and well this Friday evening.

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  3. I found you through Lisa Adams and twitter. I look forward to following your story.

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