roses

It’s a phrase that litters the obituaries section in every hometown newspaper: “In lieu of flowers, please send a donation to Do-Gooder Charity in poor dead Jane or John Doe’s name.”   But what if you didn’t have to wait until you’re dead and gone to ask people to donate money on your behalf?  Better yet, what if those donations could directly help save your life, obviating the need entirely for an overpriced funeral flower arrangement until some more appropriate time when you can’t find your goddamn dentures and you’re never quite sure which one of your great-grandkids is named Mark.  The good news is there is a way, and if you want to go straight to the “donate” part, please feel free to scroll to the bottom and follow the directions.

When I was diagnosed last month with an advanced, rare cancer–intrahepatic cholangiocarcinoma–I learned pretty quickly that there are currently no known cures or even treatment options that can ensure long-term survival with any confidence.  The chemo combo I’m now on is known to help slow the disease’s progression, until it stops working.  And it always stops working–usually after 6 to 9 months, sometimes a whole year.  At that point, there are other chemo combos and targeted therapies I can try in order to buy more time.  But my eggs are mostly in a basket that does not yet exist–a frighteningly vulnerable place to be, no doubt, but an exciting one, too.

Cancer research is evolving at an exponential rate, with new, promising immunotherapies, highly personalized medicine targeting the specific genetic mutations of an individual’s tumors, and other cutting edge biotechnologies filling clinical trials across the country.  Just last week, President Obama signed the 21st Century Cures Act, a massive grab-bag of healthcare policies which authorizes $1.8 billion in funding for the “Cancer Moonshot” initiative and includes some incentives for drug companies to develop new therapies for rare diseases.

Although this is undoubtedly a step in the right direction for cancer patients and others facing rare, lethal diagnoses, there are two major problems with it.  First, Congress still has to agree on annual funding levels.  The bill authorizes spending of up to $1.8 billion on cancer initiatives, but it doesn’t appropriate that money.  That is a separate and often contentious process that can be held hostage by other, unrelated political pissing matches, like the Republicans’ insistence on defunding Planned Parenthood–an instant poison pill for Democrats.

Then there’s the snail marathon that is our bureaucratic process.  I simply don’t have time (or the patience) for funding to make its way through the congressional appropriations process, to the National Institutes of Health and on to a group of researchers bound and determined to find better answers for MY type of cancer.  There are a few immunotherapy treatments that have proven successful in other, more common types of cancers, like melanoma and small-cell lung cancer.  But I’ve got the red-headed stepchild of cancers, so there is very little known about what, if any, immunotherapies might offer promising outcomes.

Luckily, I’ve found a way to advocate for my own survival and the survival of others like me thanks to a serendipitous connection to an amazing woman, a woman who’s also too young to have this diagnosis and a woman who will forevermore be my hero and my friend.  Her name is Bita (pronounced “bee-tah”), and she has me convinced that we will bee-tah this disease together.

Through the six degrees of separation principle and the powers of Facebook, I learned about Bita and her efforts to help her oncologist at New York’s Memorial Sloan Kettering Cancer Center  raise money for targeted research for cholangiocarcinoma.  I recently had the great privilege to meet Bita and her doctor in person.  Her doctor, Dr. Ghassan Abou-Alfa, has also agreed to weigh in on my case as I continue treatment at Georgetown’s Lombardi Cancer Center.  It’s difficult to describe the emotions I felt upon giving Bita a huge hug at the Manhattan coffee shop where we met.  She summed it up best: “Despite the shit reason, I’m so happy to know you.”

Bita inspires me on many levels.  She’s one year into her treatment and she’s doing remarkably well, both physically and emotionally.  She’s also determined to take charge of her and her family’s future by raising money through Memorial Sloan Kettering’s nonprofit research-funding vehicle, Cycle for Survival.  Now I’m following suit, and I’m asking for your support.

Cycle for Survival organizes indoor cycling relay events across the country with 100% of donated funds going directly to rare cancer research led by Memorial Sloan Kettering within six months of the event.  Using this funding model is probably even more rare than cholangiocarcinoma.  The American Cancer Society, for example, spends less than 60% of the contributions and grants it receives on cancer-fighting programs, to say nothing of what smaller percentage is dedicated to pragmatic, life-saving research.

So, here’s my ask: join my cycling team, “Bike for the Bile Ducts,” at Cycle for Survival’s Washington, D.C. event on February 25, or, if you’re morally opposed to spandex, please consider donating to help save my life, Bita’s life, and the lives of the growing number of Americans who are receiving this terrifying diagnosis.  Once our team raises $25,000, we can direct the funds specifically to the rare cancer of our choice (spoiler alert: it’s cholangiocarcinoma!).  So, help me get there and save yourself the money on rip-off floral arrangements.  Here’s how:

  1. Go to our team page by clicking HERE.
  2. On our team page, click “Join This Team” if you want to join the bike relay event.. Don’t worry–you don’t have to bike all four hours.  That’s what your teammates are for.
  3. Enter our case-sensitive team password to join: deeder
  4. Follow the prompts to complete your registration.
  5. If you just want to donate, but not ride, simply click “Donate” on the team page.

With much love and gratitude,

Danielle