Speech

Tonight I had the opportunity to speak at a pre-race dinner for a Team in Training Team of women who have prepared for and will run in the Tufts Health Plan 10K for Women tomorrow in Boston. I was asked to speak about my cancer story and about my involvement with The Leukemia and Lymphoma Society and Team in Training. After some thinking about it I decided that I should post the speech here for more to see. Enjoy.


Team in Training Tufts 10K Pasta Dinner Speech – Sunday, October 10, 2010

My name is Elizabeth Naylor and cancer gave me two birthdays. On May 4th 2011 I will turn 32 years old and on April 6th, 2011 my immune system and new healthier body will be +365 days old.

My diagnosis of Non-Hodgkins Lymphoma came one year ago. Last fall, I was 30 years old and as the doctors love to say "otherwise healthy". I was a mother to two year old Grace, a wife to Adam, a sister, a daughter, a friend, a middle school teacher. I loved to read, to play on the beach, to ride my bike. I watched Law and Order re-runs and occasionally the news. In short, I was a normal 30 year old living a pretty normal life.

On August 31st I visited my primary care physician because of a nagging cough and some chest pain, certain that some antibiotics would clear up my self-diagnosis of pleurisy. Good thing I’m not the doctor. I was simply hoping to start another school year without the coughing. One week later I was having a CT scan to find out what the “something” was that had appeared on an x-ray. Never in a million years did I expect a cancer diagnosis.

On October 16th I was diagnosed at Dana Farber with Primary Mediastinal Diffuse Large B-Cell Lymphoma, one of the many variations of Non-Hodgkins Lymphoma. I had a softball sized tumor just to the right of the center of my chest. At this time the tumor had begun to push through my chest wall and although it wasn’t all that visible to others I knew it was there and can’t say I loved the everyday reminder.

On October 20th I began my first type of chemotherapy. The doctor explained that this particular chemotherapy was effective in 95% of patients and given my general health and age it was assumed by all that I would undergo 6 rounds of this chemo, some radiation, and by April 2010 would be on vacation with my family to celebrate my health and recovery. However, after only two rounds it was clear that it wasn’t working and I moved from the 95% to the 5% category. One of the great many things that I have learned from cancer is never to assume, expect the unexpected and then deal with what comes. By this time my tumor had become significantly more obvious externally and was sort of a marker for us. Was chemo working? Is the bump getting smaller or is it bigger? Also at this time I began joking about my third boob, not that it was all that funny, but you do what you have to do. Things had gone from bad to very bad.

In November I started a second type of chemotherapy, this one requiring 4 day inpatient hospital stays. The plan was that I would do four rounds and then radiation and likely a stem cell transplant of my own stem cells. No such luck. Two rounds in I was clearly getting worse. It was a Friday that we learned this and were exploring next steps with Dana Farber. On the following Tuesday, with the blessing and great understanding of my oncologist in Boston, my husband Adam and I were in Bethesda, Maryland at the National Institute of Health learning about an experimental protocol that the Lymphoma team there believed would help me.
I began my third type of chemotherapy at the end of that week. This chemo required 72 hours of continuous treatment as well as several more hours of other drugs to make up the whole cocktail. We travelled to and from Bethesda three times for this chemotherapy and on the third trip discovered that not only was my tumor virtually the same size but now I also had a tumor completely incasing my right kidney. Things had gone from very bad to almost hopeless.

It was now March of this year and my Lymphoma team was strongly recommending an allogenic stem cell transplant as my best option. The National Institute of Health had an experimental transplant protocol that I fit into but we were also encouraged to talk it through with Dana Farber as well. The conversation with Dana Farber basically gave us the following information: we do the standard stem cell transplant here. We are willing to give it a try with your case but we don’t believe it will work and we aren’t sure that with the way your cancer has progressed you would even survive the transplant process. This information made it quite easy to decide to participate in the experimental protocol at the National Institute of Health. This was a major turning point for us. My family and I moved to Bethesda where we knew we would stay for at least 100 days.

April 6th was one of the scariest days of my life but it was also rather anti-climactic. My sister Amanda had been previously confirmed as a full match for me, something for which I will always be grateful. Many people needing a transplant never find a match or have to move forward with a partial or non-familial match.

I spent much of the day simply waiting. Amanda spent the morning donating loads of wonderful stem cells and then we waited while the cells were tested and counted and finally in the late afternoon a batch was brought to my room. The nurses had warned me that the whole thing really would seem like no big deal, but in my mind, it was a transplant, I was sure they were confused, it had to be a big deal! No, they were right.

The transplant itself went like this: a small bag, sort of like a sandwich bag filled with what looked like tomato soup was hooked to my IV. We waited about 15 minutes for gravity to complete its work and then I was done. Pretty anti-climactic!

Now we began to count days, waiting to get to day +100. I was out of the hospital on day +9 and although went in and out of inpatient a few times during the 100 days, by and large I continued to improve. It turns out my sister Amanda, has a ridiculously strong immune system that did not like my tumors one bit! Each scan I have had post transplant has brought smiles to the faces of all of my doctors and nurses, and of course to me and my family. At day +100 we were given the go ahead to move back to Boston with instructions for me to have twice a week blood draws and return to Bethesda every four weeks to check-in. I am now in what they call partial remission with no sign of cancer or tumor on my kidney and no sign of cancer activity in the mass in my chest. In fact, I just returned on Friday from my most recent trip to Bethesda and the news couldn’t have been better.

So, here I stand before you a cancer survivor. Many have said I am a miracle.
What is a Miracle? Each day different people use this word with different meanings and intentions. Often to me it feels as though the word miracle could be replaced with words like coincidence, marvel, rarity, or surprise. The word miracle also often conjures up an image of God or Gods intervening to cause an event or a healing to happen.

Is it a miracle that in January of this year we were hoping that I would live to see my daughter turn three in June, and then did? Is it a miracle that one team of transplant doctors said they would be willing to do my transplant but did not believe it would work, and another team of transplant doctors said we have a research based transplant that we think will help you, and it did? Is it a miracle that after almost a year of bad reports and really bad cancer that didn't respond to chemotherapy it looks like I'm going to live a long life anyway?

My quick answer to all of these questions is sort of.

Over the past year, I have been listed on dozens of prayer lists at all kinds of religious institutions, both in the United States and some internationally. There have been prayer vigils held in my name. There have been countless fundraisers, gifts, cards, meals, love, and support all from a network that prior to diagnosis I didn't realize was out there.

During a great deal of my treatment I prayed and meditated (there were some gaps...God and I weren't on the best of terms for awhile but I think we're better now). Without all of this support, without all of these prayers, would I be here today? There is no way to know. What I do know is that the support and prayers and all the rest of it helped to pull me through a great number of very difficult moments, days, and weeks. This is why I can say today that in a very significant way I am a miracle.

So, do I believe in miracles? Yes I do. But I also believe that a miracle cannot occur without a whole lot of hard work. I believe that there may have been divine intervention of some sort, but I know that all of the doctors, nurses, technologists, aides, and specialists that I have worked with had and continue to have a great deal of responsibility in taking care of my body and health.
And not to be forgotten or even put close to the bottom of the list I believe that what you all do with Team in Training is a Miracle. I am not a runner, have never been ,but luckily for me and for so many battling Leukemia or Lymphoma my younger sister Susannah is a runner and wanted to help.

My introduction to Team in Training came when my sister Susannah and her boyfriend Jon decided to train with Team in Training for last June’s San Diego Marathon. This was Susannah’s third marathon and Jon’s second. And as far as I know their grand introduction to truly amazing fundraising! They decided to form Team Elizabeth. They had green bracelets made to give to people who donated. They created a facebook page and they emailed everybody they knew. After two weeks of intensive work they had already raised $5000 dollars. In only a few months and in time for the marathon Susannah was the top fundraiser in the state of Massachusetts and Team Elizabeth had donated over $20,000 dollars for The Leukemia and Lymphoma Society. Quite an accomplishment! And I have yet to even mention all the miles they ran to prepare for the actual marathon which they completed successfully on June 6th.

I thank Team in Training for helping them both in this endeavor and truly from the bottom of my heart I thank the two of them for making the choice to run and to raise money for such a worthy cause in my name. Not only did Team in Training give my sister a concrete way to help me but the gift of the network of people it created who were thinking about me and my family is a gift that I can never repay to her or to Jon. There are many terrible days, weeks, months, and for some years that come with any cancer diagnosis. I have experienced many of those days and had to find ways to get through them. Thank you Susannah and Jon and everyone associated with Team in Training for helping me remember that I could get through those moments. All of your hard work each day brings hope to those battling these diseases, to those surviving these diseases, and to those caregivers who are helping their loved ones through the worst days. Hope is a great miracle that must be worked for, each and every minute.

Team in Training is a miracle. Team in Training has provided a venue for you all to come together in preparation for races like tomorrow’s 10K. Team in Training has made it possible for you to join others in running while raising money for such an important cause. Likely, Team in Training has also provided you with a network of friends that understand why you each show up to practices and events and why you are here tonight (assuming you came tonight for more than just some great pasta).

You all are a miracle. You run because you lost your mother or uncle. You run because your sister is battling or your cousin is in remission. You run because your best friend lost his brother. You run because you are a survivor and have learned the hard way that every day is a gift and that running makes you happy. You run because you want to help, you want to make a difference. You run because you care. And that my friends, is a miracle.

My name is Elizabeth Naylor and I now have two birthdays. Please keep running so that others may also celebrate more birthdays! I know I’m looking forward to two cakes and two parties from here on out!