See it, hear it on NPR’s Day to Day

 Post your comments here and let us all know what you think! Meanwhile, here’s my miracle mom!

Why is my mom smiling? Six months ago, Dr John Timmerman (left) told me my mom only had months to live. Her lymphoma had resisted three aggressive forms of treatment. There was only one last hope, an experimental drug called SGN 40 which was in a phase 2 clinical trial. Phase 2 means the drug company doesn’t know much more than it won’t kill you, but researchers don’t know much more than that. (They would say I’m exaggerating here).  Well, look at her now. Dr. T is photographing the evidence. No more cancerous lesions on my mom’s leg. The drug worked.  But I really thought I was going to lose my mom by Christmans. Since she was in the throes of really aggressive chemo, I’ve been recording my mother on mini cassettes and then with gear that NPR provided. After her cancer diagnosis, I realized she was my last connection to my family in China. I’ve been reporting for more than 20 years yet never knew my own mother’s personal story of survival, how she endured the Japanese War, the Chinese Civil War and her escape to the United States. She would never talk about it. Neither would my dad. His secrets died with him more than 20 years ago. Now, faced with losing my mom, I tried to get her to talk. I didn’t know what I would discover. 

I found out alot. Please tune in to NPR’s Day To Day program tomorrow, Tuesday May 27th . You can also hear the story and read more about it on NPR.org/daytoday

I used to tell my niece that the difference between “good” and “great” is in the details. It’s fine of course to be “good”, as in “good enough”, but what if you could be “great”!  Greatness is what changes lives, makes history, starts revolutionary change, and in our case in this community, GREAT comforts and finds cures.  There are moments in this journey where I find that good is good enough, not for me, mind you, but for others.  It’s good enough to get someone else who’s “not as” whatever, to do X. It’s good enough to develop a drug that extends life but not cures. In fact, why cure when there’s more money in extending life? Why not hire someone cheaper,or better yet, get the person you’re already paying to do double time?  What am I talking about?  Nothing in particular, except a mindset out there that is driven by Good, but not Great.

Great is, well, expensive, complicated. Simple is what works on the web and yet the big question, even in Health 2.0 is what is the next Facebook? That’s not simple. It’s giving a community specifically what they want, something more than pictures and chat.  I recall a reporter in San Jose California who once told me, the novice reporter , “Carol, it doesn’t have to be Gone With The Wind every single story”.  He stayed in San Jose, California, and there’s nothing wrong with that, is there?  There is someone I know who’s going to read this. He will understand that the difference between Good and Great and Simple on the Web may not be Good Enough.

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.