Mom’s 80th Birthday Party. Does she look “sick” to you? Joanne Lin continues to astound her oncologists. She’s been fighting her diagnosis for Large B Cell Cutaneous Lymphoma for the last two and half years. She is at the end of the line. They gave her every treatment available, including some her HMO was not too thrilled about administering. Why? Because they were a long shot to work. And because they are expensive. The last one was a full body radiation by a radioactive antibody called Zevalin. To prepare for that, my Mom had to endure two hospitalized infusions of a chemotherapy cocktail. If only the side effects were as kind as a Cosmopolitan. Instead, they were awful; a classic example of why treatment is sometimes worse than the disease. Yet, look at her now. You would not know that she is in a clinical trial aka; the last train out of the station, destination unknown.  More on her therapy later. I just want to share how proud I am of her.

Let’s be adult about this. It’s a touchy subject. Today, I got my first mammogram ever. I’m only about 15 years late. I know better. Afterall, if you’ve been reading this site, you know that I have a history of dealing with cancer. It felt good to be in denial. When I was truly young, I was too busy.
Then, when I was the devastation that cancer could bring, I was too scared.   My corporate health care plan is about to run out and I’m going on Cobra. While my daughter and I will technically still have health care, I will technically be paying for it, every month—hundreds of dollars—$790 to be specific.  So while I’m still on the corporate plan, I thought I should dive in to the inevitable and start the inevitable check ups. My doctor told me women are better than men about pursuing our health care because we are socialized to get annual exams. The routine of getting a pap smear at least gets us through the door. Men, however, wait to get symptoms. The breast exam area at UCLA is in the basement. The changing room is decorated with warm woods and a locker system that reminds me of a spa. There are two other women waiting with me. One is elderly, heavy set and mobile only with a walker. The other is young, pale and quite thin. There is silence. No eye contact. No smiles that you might see at, say the eye doctor or dentist between strangers.  There is a question in the air: Do I have cancer?  Wasn’t it a wonder as a child to go to the doctor and get poked and prodded, asked a few questions, be given a lollipop and sent on our way? I long for those days again when routine exams were just that; routine.

I’ve been struggling with a horrible cold and lost my voice for more than a week. I was in this sorry condition when I moderated the Bonnie J. Addario Lung Cancer Foundation summit in San Francisco last Friday. There I was, squeaking out a sentence here or there among some of the great minds in finance and cancer research. I found myself chatting with Michael Milken about social networks in the cancer space, Art Kern, Yahoo board member, Van and Eddi VanAucken, philanthropists, venture capitalists and cancer survivors. But perhaps the most profound conversation is the one held with someone I cannot publicly identify. He is an oncologist and has saved many lives and held the hand of those he could not. He is a stage four lung cancer patient, with perhaps one more year of salvation from the drug, Tarceva which works to stave back certain forms of lung cancer for about 2 years. His own cancer patients do not know he is sick. “F” looks fantastic—twinkling eyes and an easy laugh. He and I both agree that “survivor” is not the right word. There must be something more accurate, less emotional, more about living than simply overcoming. There he was, in a room filled with people worth billions and even more willing to spend that much to find a cure for a cancer than kills more than any other. More than 170,000 in the United States. More than 1.3 million around the world.  He keeps his disease a secret because he does not want pity. He wants to focus on the science and the funding that could save him, and so many others.

10. Don’t go alone-Witnesses inspire dialogue and takes notes

9. Be Positive-Communicate eagerness for mutually satisfying resolution

8. Pencil and Paper-Don’t trust memory!

7. Know Your Stuff-Review patient education you’ve been given

6. Set a Goal-By end of meeting, you’ve agreed to ___?

5. Bring Reprints-Bring copies of info you want to share with Dr.

4.Prepare Questions-Don’t let the mtg end until your questions are answered

3. Stop the Clock!-Don’t accept medical gobbledy gook. Ask for clarification

2. Rules of Treatment-Do you understand risk-benenfits, complications, alternatives?

1. Preserve Nuclear Option-If your dr. won’t compromise, ask for a referral/second opinion

*Dr Bill Lloyd–CNN colleague and all around good guy!

Before running Daryn Kagan and my cancer series, I had written a post about rare cancers. I shared the story about Silicon Valley billionaire Steve Kirsch’s battle with a rare blood cancer, Waldenstrom Macroglobulinemia.I am so glad that Steve saw the post and reached out.   He said I could share his email:

“i see my story is on the front page your website. thanks for
the press. it is so sad when you look at the numbers. 224 people die from
terrorism each year. government spents $100B per year on that.
500,000 people die from cancer. Government spends $5B per year.go figure.and then they pass a bill to authorize $250 million for blood cancers
like mine. But then they don’t appropriate the funds!!!!!!!!!

“Terrorists are just a distraction. The real enemy is government stupidity. Here’s how I know that. Last week, I was diagnosed with a rare incurable blood cancer called Waldenstrom’s Macroglobulinemia (WM).  Because it kills, on average, only about 1,200 people per year, it’s considered an orphan disease so it gets very little money and attention from the government and drug companies. It’s basically a death sentence. I have a little more than 5 years to live.

As I learned more about my disease, some of the most significant things I learned were:

• the lifetime risk of developing cancer is 1 in 2 for men and 1 in 3 for women
• there is a 25% chance that you will die from cancer
• 500,000 people die from cancer each year
• the government spends about $5 billion a year on research; $114M of which is spent on non-Hodgkin’s lymphomas collectively, but zero dollars are spent on WM specifically.
• Only 8% of the research proposals to the NIH get funding. Researchers spend about 30% of their time writing grant proposals. Since 92% are turned down, this is an enormous waste of our most precious medical talent. Even prominent, highly decorated researchers such as Ken Anderson at Harvard, only have 8% of their research proposals granted.
• our society spends $200 billion a year on medical care for cancer victims (40 times the amount we spend on prevention)
• Gleevec is proof that we now have the technology to create real “wonder drugs” that cure cancers that were previously untreatable
• the researchers on my particular cancer said that they could efficiently deploy more funds to accelerate their research. They are confident that they can create a “wonder drug” for my disease. They just lack the funds. They get zero dollars from the government now.
• the research dollars for cancer have been going down every year in real dollars for several years now
• cancer research has never been a national priority

To put the cancer numbers in perspective, a disease called “terrorism” in the US kills, on average, about 224 people per year. Approximately 0 people per year are killed by terrorists from Iraq. At that size, it should be categorized like my disease as an orphan disease and it should get no government funding at all. Yet, we spend over $100 billion a year fighting it in Iraq alone. Not only that, but every year, four times as many lives are lost fighting it, than are directly killed by the disease itself! In short, we’ve save more lives by not fighting it at all. Even worse is that the more money we spend fighting this disease, the more prevalent it becomes and the more people unnecessarily lose their lives!

(more from Steve tomorrow) Thank you, bloggers, for staying with me. Thank you for posting, responding, being angry and by doing so, making a difference. Now go to The Poll and Vote!