News Room

September 30th, 2007 · 2 Comments

Cancer, Questions, and Conversations

Carol and Will

That’s Will and me. We were two educated, motivated, connected members of the national press corps. Between us, we had seven Emmy Awards for breaking news, documentaries, and investigative journalism. Yet when Will was diagnosed with a very rare form of cancer in the fall of 2002, we discovered that the our own experience with a terminal disease would be the most challenging story we’d ever cover.

It’s been nearly five years since Will died, and still my questions continue. I don’t just ask why did it happened. (That’s a question that will may never go away.) I also ask a lot about cancer research funding and treatment. Who gets it–and who won’t?

The National Institutes for Health’s will spend approximately $4.75 billion this year on funding research. (That’s a decline from $4.83 billion in 2005, by the way). Of that amount, approximately $1.4 billion will go toward studying the ‘big four’ cancers: prostate, breast, colon and lung.

Out of the 1.5 million people who will be diagnosed with cancer this year alone, maybe 400,000 will have these common cancers. Yet more than $1.4 billion will go toward those areas of research.

Yes, people die from those cancers, particularly from that of the lung. But far more live. With early detection, the others are often the most recoverable forms of cancer. (I would give anything for Will to have had prostate cancer. It has a 90-percent cure rate.)

Will had squamous cell carcinoma of the maxillary sinus. It’s not a pretty name. It doesn’t have the backing of any big corporate initiatives, nor a colorful wristband. In fact it’s typical victim isn’t even very sympathetic: an alcoholic or heavy smoker, and often a troubled war veteran with a host of other health issues. (Of course, none of these were common in Will.)

Squamous cell carcinomas are so common, the federal government doesn’t even track them any more. But Will’s disease was a type of head and neck cancer, and a growing number of people are being diagnosed in this category every year. Still, only five percent of funding–around $262 million in 2004–was spent studying head and neck cancers. So there aren’t many treatment options.

For Will, after months of chemo and radiation, our final option was extremely dangerous. As you’ll learn reading in back-dated entries from this blog, persuading doctors to even consider this was a battle all its own.

Now, I am not saying that it’s wrong to fund more common cancers. Any funding will feed the greater good. But I can’t help but ask: Why do some people get the life saving operation, while others have to wait? What do those survivability statistics really mean and who comes up with those numbers anyway?

All of this questions came to a head for me in late 2006 when I decided–on my own–to leave CNN. I was hoping for a year of transition to discover myself and my next passion. The years of being shell-shocked by cancer needed to be over. (May no one ever have to become a new mom, widow and single mom in just six weeks…Though I have to say, having to wake up and smile for my little girl every day has been a greater reward than any Emmy or network slap on the back.)

Carol and MomThen something happened. My mother was diagnosed with a large B-cell lymphoma. This occurrence was absurd (as are all cancers). The timing, however, was ridiculous. Dare I say, convenient? I’d just moved back to my home town. Just in time to be at my mom’ s side.

When an HMO didn’t want to give my mother an aggressive chemotherapy that included the use of an experimental antibody, I was with her to take action. I hauled her off for a second opinion reaching out to a specialist at UCLA. Fortunately that doctor disagreed. UCLA put it in writing, faxed it to the HMO, and put them on notice.

My mother would not be alive today without that UCLA specialist believing she was worth saving. It brought forth another important question: How many of you give up because your primary doctor says this is the end of the line?

Realizing this, I created this online space because my questions and conversations about cancer aren’t over. The more people connected to cancer I met, the more clear it became that  there just wasn’t enough time or space available in traditional media to share and learn about these journeys.

Each week, when you’re not learning about mine and Will’s experiences all those years ago, or the developments happening daily in the cancer world that are worth discussing, you’ll also learn from other contributors and people that I know will enlighten all of us about the complexity of cancer. Even the happy occurrences that come from the disease.

In this first post, it’s my honor to introduce you to Ken, our first contributor. A veteran of war and science alike, Ken will share with you his own personal battle in what I call the ‘fire fight.’ That critical time when you’re loved one has been given a set amount of time–and you’re doing everything you can to extend it.

As you read about Ken, or Will, myself, or my mom, feel free to share your own stories–or provoke your own conversations. This is our forum. Our common denominator won’t be cancer. Instead it will be that we are all human, and that this is a place where we all share hope.

Tags: My Journal

2 responses so far ↓

  • 1 Julio Vasconcellos // Sep 30, 2007 at 9:16 pm

    Carol, your story and your fight are an inspiration to all of us. I am looking forward to following the reporting and features on the site!

  • 2 Ginger // Oct 1, 2007 at 10:36 am

    Welcome to the virtual space, Carol–and thank you for giving us a place to tell our tales…

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