A Line in the Sand

I’m sitting here trying to edit my cancer story into something short enough that you will read the whole thing while still making it meaningful, not an easy task.  Over the years I’ve gotten used to sharing it in bits and pieces depending on what will have the most impact in any given moment.  Then a couple weeks ago I had a moment the required sharing all the ways in which cancer has touched my life.  Sharing it left an oncology social worker speechless with tears running down her face and me feeling stronger and more determined than ever.

 

Many people know that I run in memory of my husband and my uncle.  A few more know that I also run in memory of a friend’s little boy.  Most never know just how much cancer has shaped my life.  Once of my earliest memories is of a bright summer day and waiting anxiously for a friend to arrive at the park so we could play together…I wasn’t even four yet.  I remember the adults gathering together and the whispered word, leukemia, and being told my friend wouldn’t be coming to the park any more. By the time I was seven I’d lost three friends to leukemia.  I believed to the depth of my soul that it was what got you if your hands or feet hung off the edge of the bed at night.  There has not been a single day of my life I haven’t been aware of cancer and what it does.

 

Three of my four grandparents died of cancer.

My mother has had cancer twice.

One of my aunts had cancer.

My sister has had cancer twice, undergoing chemo as an infant, and again as a teenager.

The list goes on, and on…right up to me.  No, I haven’t had cancer but am considered to be at high risk for developing some kind of rare cancer in my life.  Five times more likely than the average person…honestly I try never to dwell on that statistic.  Especially in relation to just how common blood cancers are, it’s too scary.

 

So I’m here, on the team, training every day, praying with every footstep.  For myself, for all of you, for every person who hears the words, “You have cancer.”  When I’m asked why I run, why I continue to be part of TNT I tell people this is where I draw a line in the sand and fight.  This is where I declare “Cancer will not win!”  I am here because to my very core I am a cancer survivor, it’s just never been my own cancer.  Again and again I’ve said goodbye, picked up the pieces of my heart and gone on.  Every time I remember the sorrow, the pain, the fear, it renews my commitment to making sure the day comes when no one has to walk that path.

 

I know some of you are here because you have very personal connections.  Others are here for a variety of different reasons.  Each and every one of you is a fellow warrior in the fight to end cancer and whether we meet at an event one day or not you strengthen me and build my courage, you inspire me every day to give just a little more.  You are my heroes.

Dive in deep!

Dive?  What dive?  This isn’t swimming, this is running/walking.  Are you nuts?

 

No, I’m not…well maybe just a little.  This week’s mission moment contains a challenge and a confession.  First, the confession.  I AM A READER.  OK, a voracious reader…to the tune of roughly 200 books per year.  Bill used to say there was nothing more frightening than me without something to read.  Probably very true!  That said I read primarily fiction, if I want history or grim facts I can just turn on the evening news and get depressed, books are for escapist hedonism. Non fiction, biographies, actual history books?  Please just shoot me, it would be less painful.

So imagine my surprise when I came across a book that combined all three of those things and I fell head over heals in love with it.  What book could do that?  What BOOK should be a mission moment?  Only one…

The Emperor of all Maladies: A Biography of Cancer

By Siddartha Mukherjee

Stop cringing and rolling your eyes! I promise the book is worth not only every penny but every second you will spend reading it.  I bought it shortly after its release in 2010 fully expecting it to be something I trudged through a few pages at a time for months.  Instead I found myself riveted and staying awake until my eyes just couldn’t stay open a moment longer because I had to keep reading. One of the first quotes in the book literally took my breath away and began a subtle shift in my perspective of just what it is we do each time we commit ourselves to raising funds for the LLS.

“In 2010, about six hundred thousand Americans, and more than 7 million humans around the world, will die of cancer.  In the United States, one in three women and one in two men will develop cancer in their lifetime.  A quarter of all American deaths, and about 15% of all deaths worldwide, will be attributed to cancer.  In some nations, cancer will surpass heart disease to become the most common cause of death.”

One in three? One in two? All you have to do to take a quick look around where ever you happen to be at this moment to have that statistic really hit your heart. But we are just fighting for cures for blood cancer, right?  WRONG!  It’s easy to think that though.  We see some of the research the LLS has supported being used to fight other kinds of cancer frequently.  I for one never thought much about it. What I didn’t understand until I read this book was just how intimately connected ALL cancer is to blood cancers.

Everything we know as modern chemotherapy grew from the very first experiments on blood cancers.  Did you know that?  I used to hesitate to ask for donations to the LLS from people I knew had faced other cancers.  Not any more more.  Thanks to this book I can explain in far more meaningful ways why EVERYONE should be supporting the LLS mission. The true quest for a cure begins right here, with blood cancers.  The slogans we see “Someday is Today” and “Cancer Ends With Me” don’t say we’ve cured blood cancer, the say CANCER period.  I love that!

WARNING: Do not start this book at bedtime!

WARNING: Do not start this book at bedtime!

So my challenge to you is this to learn just how vital to the goal you are, how connected those miles you do and dollars you raise are to an entire world of patients, doctors, researchers. Find a copy of the book, at the library, a friend’s bookshelf, a used bookstore, anywhere and commit to reading it before this season is over.  You won’t regret it…in fact I bet it will fuel your miles for some time to come.

 

The Long Road

Often when we think of cancer, whether its a blood cancer or some other type, what’s called to mind is immediacy.  The sudden battle for the life of the person diagnosed.  We tend to view cancer as a short term problem, chemo, radiation, surgery, chaos for a few months or a year, then if all goes well back to life as usual.  But there is another side to cancer, living with it…

John Scoblic, CLL (with Beamer)

John Scoblic, CLL (with Beamer)

There are many types of blood cancers that are so slow growing that doctors opt to just watch them rather than treat.  Others are treated very simply, others require more aggressive treatments.  But for all of these patients, like my friend John Scoblic, cancer is for life and one of the hopes of the LLS is to make that life the best it can possibly be.  This week I’d like to introduce you to one of those, Chronic Lymphocytic Leukemia, roughly 15,000 people were diagnosed last year. You can read about CLL here: http://www.lls.org/#/diseaseinformation/leukemia/chroniclymphocyticleukemia/ 

Do you ever wonder exactly where the research dollars go and how big the impact might be?  We all know the search for cures is a long one, along the way there is news like this:

http://www.lls.org/#/aboutlls/news/newsreleases/021214_lls_applauds_fda_approval_ibrutinib

Need a little inspiration?

Take five!

 

 

 

Training Our Immune System to Fight Cancer Cells

http://focusforwardfilms.com/films/72/firewithfire

Key development:
A research team at the University of Pennsylvania and Children’s Hospital of Philadelphia led by Carl June, MD, is developing new approaches that selectively boost a patient’s immune system to help fight cancer.

The team genetically engineered T cells and used them to help patients with chronic lymphocytic leukemia (CLL) and acute lymphocytic leukemia (ALL) achieve remissions: Two of the first three adult patients to receive the therapy remain in complete remission more than three years after their treatment, and the first pediatric patient has been in remission for more than a year.

The results are shifting expectations about how to treat patients who no longer respond to standard therapies.

How LLS helped:
LLS has invested $16 million in the work of Dr. June and colleagues over the past 15 years, and plans to invest another $5 million over the next five years to get this treatment to more patients.

Why this matters:
Dr. June and his team, and other LLS-funded investigators, are trying to accomplish what researchers have hoped to do for decades: Train our immune systems to kill cancer cells. The strategy also shows promise for other types of cancer patients.

The Tapestry

Lately I’ve spent a lot of time thinking back on my journey with Team in Training and what an amazing, happy, sad, hysterical, challenging experience it has been.  Ten years!

Remembering brought me to the essentially the theme for this week. How each of us and those who touch our lives are threads in the vast tapestry that is Team in Training.  One made ever more beautiful and strong because we came.  I can’t take credit for the tapestry vision that came from Bonni Brooks several years ago.  Imagine the moment when I joined the team for a practice and while at the water stop a teammate pointed at a poster hanging by the trail and commented on how funny the cartoon was, I chuckled and said, “Thank you, I do those in memory of my husband.” Then was …stunned… when she said she hadn’t know there was a real person who inspired those.  In a way it felt like losing Bill all over again.  Bonni later took the time to gently explain how the stories of people like Bill and so many Honored Teammates who lose their battles become part of a tapestry.  Those who come to the team and stay just a season may add a thread to that tapestry but they seldom see the whole thing.  Those that come and stay season after season slowly hear more and more of the stories, they learn the history and more fully see the tapestry.  I find comfort in that.

Every season with TNT I see new bits woven in and hear stories that stay with me forever.  Each strengthens me and reminds me both how far we have come and how far we still have to go, each thread is essential and valuable.  In talking to our teammate Richard B. about the person he is running in memory of he shared this;

“Mine is not a terribly connected story.  I did not know Alan at any point.  My wife and I were on our way to visit my daughter and grandkids in CA, and struck up a brief conversation with a nice lady on the first leg, St Louis to Vegas.  A week later, we were returning to St. Louis, through Vegas, and saw her again in the Vegas airport.  When we struck up another conversation, noting the coincidence, we learned that her husband, Alan, had died of a form of leukemia.  I mentioned that I run for TNT, and she said her son rode in a couple of TNT events, both before and after her husband had died.  If I remember correctly, Alan may have ridden for TNT as well.   (As an aside, she mentioned that her son insisted on riding Alan’s bike (not a particularly good bike for the intended purpose) for the first TNT ride he did after Alan died, just because it was for him, but he rode different bikes thereafter.)

In any event, I asked if she would mind if I mentioned Alan as an honored teammate in future runs, and she was delighted…

So, anyway, I don’t have a close personal connection with the family or a meaningful story to tell about his life and times… I just liked the fact that his son did TNT events for him, his wife knew of TNT and I could make the family feel good about honoring her husband in future TNT events and raising money to help a cause near to their hearts.”

So Richard along with Alan and his family become part of the tapestry of our team.  Like the long ago woman in the Seattle airport as I was returning from my first TNT event.  I was exhausted and frankly in no mood to face flight cancellations much less a long wait near a screaming two year old.  When I just couldn’t take it any more I pulled out the little TNT beanie bear I’d bought while at my event and offered it to the little boy’s mother for him to play with while we waited. Honestly my only motivation was the selfish desire for quiet.  She very quietly thanked me and apologized saying that he’d just gotten his chemo and the drugs gave him horrible migraines that always left him screaming.  Then proceeded to tell me how important TNT and the Leukemia & Lymphoma Society had been to her. That moment put the whole season in perspective, it is both part of the TNT tapestry and part of my own.  A chance encounter in an airport, for myself, for Richard, for others I’m sure.  With an estimated 1,129,813 people in the US living with (or in remission from) a blood cancer there are stories all around us that just haven’t been shared yet.

Where will you find yours? Or have you found it already and perhaps think you don’t know enough about the person to share?  Do it anyway!  No matter how briefly the contact all of those moments serve to inspire the team and remind us why we are here.

Survivors, Olympic Style

Often when we think of “cancer survivors” we think only in terms of a person who had cancer and was cured.  In my opinion though there is a far deeper, more realistic definition.  I embrace one of the dictionary definitions and apply it to all those who’ve been through a cancer battle with someone they love, “the remainder of a group of people.”  With that in mind I share with you the stories of two men, both survivor’s, both Olympians, opposite ends of the spectrum but each a story of courage and determination. When the miles feel long, or you just feel discouraged come back here and read again.  The difference between the two stories comes down to research, to the money you and I will raise this season, read and remind yourself why you are here.  We need far more stories like Brian’s.

Dan Jansen – Speed Skater

Brian Fletcher – Nordic Skier

Train strong!

Precious Cargo

Way back in 1982 I celebrated my seventeenth birthday by dragging my mother to the Red Cross so she could give her permission for me to donate.  I remember touching the bag afterwards and thinking that I had just saved someone’s life.  I was committed to donating as soon as allowed and doing it for the rest of my life, it was my way of returning the favor for the blood that had saved my little sister’s life.  If you start at 17 and donate every 56 days until you hit 76 years old you’ll have donated 48 gallons and potentially saved over 1,000 lives.  Save over 1,000 lives just by sitting down quietly for an hour every other month. How amazing is that?  I could never have known that day just how important blood donations would be to me.

For the next 12 years I donated (primarily platelets) consistently, with time outs for illness once in a while, sometimes as often as every 3 days. (Being both O negative and CMV negative is a rare and precious thing.) Almost always those donations were going to cancer patients. In a distant, detached way I liked that I was helping them fight but did not yet grasp fully what that meant. In 1992 my uncle was diagnosed with diffuse mixed cell lymphoma, stage four…that’s about as bad as it gets.  After some truly horrific experimental treatments he was deemed a ready candidate for a bone marrow transplant.  The crushing sadness a year later when the bone marrow stopped working I thought would forever be the hardest thing I ever went through.  At the end my uncle was getting blood transfusions every three days to keep himself going, then even that was not enough.  I thought then that I understood the importance every single blood donation.  I did not.

In 2007 after six years of living with an untreatable type of leukemia my husband needed his first blood transfusion.  And I began to see…  There were no blood donors in Alaska that matched Bill’s blood type.  It took them three days to find a donor in another state and get the blood to us.  It seemed miraculous that he went from pale and too weak to walk to vibrant pink and healthy looking right before my eyes.  In those early days he averaged one transfusion a month.  That changed over time and like my uncle by the end of his life Bill was getting transfusions of red cells (sometimes platelets too) every few days.  A year or so after he died I came across my old appointment calendar and sat and counted.  Just counting the ones I had remembered to write down, which misses most everything that happened in the ER or while hospitalized, he received 642 units of blood.

Six hundred and forty-two times Bill’s life depended entirely on strangers.

On people willing to walk through a door and say, “I’d like to donate.”

As each season with Team in Training begins I look at the team and see two things. Amazing people committed to making a difference in the lives of others and strong healthy bodies filled to the brim with very precious cargo, blood.  I wonder how many of them have ever donated and if they really understand just how much a cancer patient’s life depends on donated blood to keep them strong enough for the treatments that will save their lives.  An average season is time enough to donate twice, I challenge all of you to do it at least once.  Choose to make saving lives a routine part of your life, there is no greater gift. Because the rarest blood type is the one not on the shelf when it’s needed.

Take a moment today and visit http://www.redcross.org/blood to learn more about donating blood.  Then go one step further and visit http://www.bethematch.org and learn about joining the Bone Marrow Registry you just might be the cure someone is praying for today.

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