Carol Lin Reporting

Well, I have to say I’m a terrible blogger. Most of my week is either spent in  cancer treatment center with my Mom (who’s doing great, by the way) or in meetings to get my start up…well, started up! Justin.TV has been very patient but understandably wants their broadcasting gear back since, well…I’m not broadcasting!.  Frankly, I don’k like the name of this site.  It’s not “me” any more, or at least the new me. This should be called “Carol Lin Gets A Life”.  Then I would feel more authentic! All in all, my day is spent in my secret life of an entrepreneur doing things, speaking with people who can make a dream come true before someone else does it better or faster. Here’s the thing; each day I ask myself how long can I go on a dream of building this site for cancer patients and their families?  Each time I say…you’re still making progress. And then WHAM! Something amazing happens. Like when Dean Hovey called me last friday to say “Let’s talk”.  Yeah! THAT Dean Hovey!  His name was prominent enough to get us reservations at THE hottest restaurant in San Francisco. My friend kept nudging me to say, tell the hostess who YOU are too!  I think I pale in comparison to some of the Silicon Valley titans and innovators I’ve had the pleasure to meet.  Now I sound like I’m groveling. Sorry. I’m just grateful. Now, I can’t tell you just yet why one of the creators of the Macintosh mouse was calling but will very soon.  Meanwhile, friends, colleagues, supporters send me links to sites that seem to offer what I’m trying to create. Then I hear that Steve Case (augh!) is taking on cancer with his half billion dollar personal endeavor, Revolution Health.  Don’t you think that’s enough to make a grown woman cry?  Uh, yeah. But then I realized the more, the merrier on the web. Maybe I’m crazy (I’m not). Maybe I still believe in my gut (I do), but I really think I’m on to something and I’m not alone.  When you have the former creative heads of Turner Interactive, the founder of the Learning Company the retired General Partner of the Mayfield Fund and this Special Health Care Group (sorry, can’t share just yet),  Nick Hodulik, (www.generalthings.com) the architect of Showtime’s L Word Our Chart social network (”What do cancer and lesbian hook ups have in common? Stay Tuned!”)…oh yeah, and my pal David Banks—self proclaimed gear head creator of the sustainability.publicradio.org  pitching in, fingers crossed…well…. then that’s social networking, dontcha think?

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!