Guest Post: The wisdom of patients

Posted on  Posted by Judy Feder on October 01, 2009 in Guest Posts

Another birthday and it’s been all cancer all the time since at least the 16th, so much to think about, including my desire for more birthdays for me and the world. I got a lot done this year, including a good quality of life since starting  Herceptin therapy for my breast cancer (which spread to my lung and liver) last January.

I had the summer I wanted, and made it to Toronto by the skin of my teeth on the 16th to present a paper on my passion for the wisdom of patients. In fact, this is the first time I formally got to survey cancer and other chronic disease communities … happily proving my point that this is not just a cancer-driven phenomenon, but a deep-seated need to make meaning of our journeys with our fellow brothers and sisters … and contribute our considerable patient wisdom to the health care mainstream. Yes!!!

But I crawled into MRI office on Saturday AM, and learned that my cancer spread to my brain, probably months ago. An emergency craniotomy on Monday the 20th, way too long in the ICU, and I find out today, MY BIRTHDAY, that I go home tomorrow. To … radiation, more chemo, much of what I’d lived with for almost 8 years, although let no one tell you there is anything like brain surgery!

I am so full of life and the desire to see more birthdays for me and those I love. No Pollyanna – I lost way too many sisters this year. But, boy, I’ve found others like the wondrous Katrina, a single mom in Oakland with whom I share lung and liver metastases, and a healthy skepticism for anything maudlin. She blithely went to see family in England and blew off treatment for a couple weeks. She calls my brain metastases boll weevils, whatever those are! We are so devoted. We’ve never met. We want so much to be there for our gorgeous children.

I want to watch Duff of “Ace of Cakes” and make a healthier red velvet cake for all who want their birthdays to mean a little bit more. I want to give moms a clue how they can imbue a kids’ party with great good by letting them make Sophia’s Garden StoryFlags™ to send to a kid with cancer, or tie together for an American Cancer Society Relay For Life event … having the time of their lives and creating something beautiful to boot.

I want to give my patient wisdom, not in cyberhugs, but doses of the real emotional currency of cancer – information –that we alone as patients have – on treatment, side effects, you know!

I will be a proud member of the American Cancer Society’s movement for more birthdays for as long as I can. Life before cancer? Don’t remember. Choosing life? Every day, if I can. No better way to say that than with a birthday.


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