Monday, December 20, 2010

Remember to be thankful

His name was Michael and we happened to be receiving infusions in side by side chairs in the day hospital at NIH.  It was my day +100 post transplant and when the infusion of anti-fungal medication was finished I was headed for my PET Scan.  Adam and I were both a bit anxious to say the least.  I didn’t actually learn Michael’s name until after he had left and I asked his nurse.  While he and I were talking names just didn’t seem important.  The commonality of our experiencing, the nightmare of cancer was enough.  We talked a bit about NIH, the weather, his recent scans that had turned up positive results, and my upcoming PET Scan.  Michael’s infusion was complete before mine, but before he left the room he did something that I will never forget.  He walked over to my chair and asked simply “Do you wear a Livestrong bracelet?”  I said no, that I wore a Team Elizabeth bracelet and had just never picked up a Livestrong one.  Michael proceeded to take off his own yellow bracelet, revealing an incredible tan line (clearly this bracelet had been there for a while).  He handed me the bracelet and said “This has helped through some really tough times.  I think you could use it today.  You’re scan will be fine.”  I barely got out the words Thank you as he smiled, waved and left the room.  Thank you Michael for making a difference in my life that day and each day that I continue to live, getting healthier and healthier.  You were right, my PET Scan was better than fine.

Saturday, December 18, 2010

Stem Cell Donors

A little over eight months ago I was the recipient of a stem cell transplant.  I was lucky.  My sister, Amanda, was a full match and as it turns out has an amazing immune system.  The doctor's have been amazed by my progress each step of the way and I can say with certainty that the transplant saved my life.  Many patients needing a stem cell transplant do not have sibling or familial matches and must rely on the national bone marrow registry to, hopefully, find a strong enough match.  Sometimes this happens and sometimes it doesn't.  I have even heard stories of matched donors backing out at the last minute.  In my case there was no way my donor would back out...I am her older sister after all and would have kicked her butt! 

Tonight on CBS Evening News I saw the story of Matt Hoffman (a stem cell match and donor) and Warren Sallach (the stem cell recipient). 
http://www.cbsnews.com/stories/2010/12/17/eveningnews/main7160923.shtml?tag=cbsnewsTwoColUpperPromoArea
This is an inspiring story of a football team doing the right thing, a young man being asked to give, and the life of a father being saved.  Please read the story.

This holiday season you too could sign up to possibly save a life.  The procedure is practically painless and nothing like the way it used to be done (no more big needles into your bones).  Take the few minutes to take a look at http://www.marrow.org/   and strongly think about becoming a donor.  You could give the gift of life to another human being...is there a better gift than that?

Thank you Amanda, for your gift.  Merry Christmas to all!

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.

Tuesday, December 7, 2010

A sad day.

Today is many things to many people.  It is the 7th of December, 2010.  It is the anniversary of the attack on Pearl Harbor. It is the day that Elizabeth Edwards past away after a long battle with breast cancer.  When I heard this news it was like being punched in the gut...more than once.  I have never met Elizabeth Edwards and now will never have the chance but I can say that her story helped me more than once during my own struggles with non-hodgkins lymphoma.  She is an inspiration.  She taught me about grace, strength, emotion, family, and playing the hand that you are dealt no matter how difficult.  Over the last several years I have read many articles and watched many news stories about Elizabeth and the Edwards' family, even before my own cancer diagnosis she was a woman that I wanted to know about.  I wanted to sit and have lunch or tea and ask her questions and learn about her as a person.  Unfortunately, she and I (as well as so many others) are part of a club that none of us wanted to be a part of.  We have experienced being diagnosed with cancer, we have fought the hard battles in an effort to save our own lives, we have advocated for others and their lives, we have seen others lose their battle, we have cried, we have laughed, we have made inappropriate cancer jokes, above all else our lives have been forever changed.

Elizabeth Edwards, you will be missed.  By me and countless others who have met you and who have not.  My heart goes out to you and to your family.  You will not be forgotten.

Monday, December 6, 2010

'Tis the Season

This morning began like most mornings in our house these days...Grace did not sleep all that late and in fact awoke before me (this actually never happens).  I snuggled her into our bed and headed to take a shower.  Moments into my shower (right about when I started thinking how nice it is to shower without having a conversation with a small child), I heard the bathroom door open and there was Grace peering around the shower curtain.  "Mommy, is it ok if I go in my bedroom and get the bible so I can read Daddy the stories about Baby Jesus?"  "Of course sweetie, Daddy will love that."  My daughter is 3.5, has dealt with the last year with poise and strength and now at Christmas time wants to read about Baby Jesus with her Daddy.  Does it get any better than that?! 
This time of year, as many of us well know, is filled with Santa Claus, shopping, wrapping, and gifts.  It can be hectic and stressful and many people forget to slow down and really enjoy the season.  This year we are still buying and wrapping gifts and with that brings dealing with the crazies at the various stores but I have learned something post cancer and that is truly what the real gifts are.  It was a gift to me this morning to hear my daughter ask such a genuine and heartfelt request.  Each day is a gift (I know...cliche...but true), no matter what your health or life is throwing at you. 
'Tis the season to remember what is important and to reflect on why it is important.  Take a moment and look at what you are buying for others and think about how that gift is a reflection of your love and caring...perhaps the gift of time or some well spoken words would be gift enough.

Thursday, December 2, 2010

Jimmy V. Week

When you have a chance check out the following website: http://www.jimmyv.org/index.php

This week (Dec.1 - Dec.7) is Jimmy V. Week.  This organization is well worth the time it takes to click on the above link and do a little reading.  Here is a quoted passage from the site, about Jimmy Valvano:


"During one of Jim's final interviews he stated, "I want to help every cancer patient I can now. I don't know if I can handle that, but it's the only conceivable good that can come out of this." Jim proved that he could more than handle his final role as cancer advocate. He spent the final ten months of his life giving the world personal insights into the life of a cancer patient in the hope that he could bring some attention to the disease that affects millions. He was not afraid to let others witness his weakening body or the tears that he shed when he spoke of his certain death during interviews and public appearances. He knew that his body would lose the battle against cancer, but his vibrant spirit was the gift that he would leave behind."