more perspective on survival–living at stage four

Here, through the looking glass, in the back of the beyond, there is no normal. There is no certainty, but that’s true in the old world as well.

Katherine Russell Rich, from “Turning a Death Sentence into a Passport for Life”

Several weeks back, while preparing for a talk on survival, I had the good fortune to read Laurence Gonzales’ fine book Deep Survival.  His distillation of what helps people survive was fascinating.  Each time I revisit my recovery, I learn something new about it.

A week later while down in San Francisco, I was visiting with a good friend of mine from our days at Cal Poly.  We’d fallen out of touch for a while, and have enjoyed reconnecting.  I’ve really enjoyed swapping stories about our adventures and our kids.

Last summer, she was diagnosed with stage four breast cancer.  The cancer is into her bones.  She’s into her second course of treatment now, and is facing some daunting odds.  The American Cancer Society gives five-year survival rates of about 20% for stage four breast cancer patients.  At stage four, the focus seems to be more about extending life rather than curing the cancer.

As we walked, my friend talked about the paradox of feeling fine now.  She’s taking care of herself, and is active.  She talked about spending time with her kids, and taking on some projects for work.  But at the same time, she doesn’t know what tomorrow will bring.  It’s difficult to tell how she will respond to treatment, difficult to anticipate whether or not she’ll be physically able to fulfill professional commitments, or to do volunteer work at the kids’ school.  It’s difficult to live beyond the present.

As we spoke, I found myself offering clumsy optimism.  Despite my good intentions, it’s difficult to be optimistic sometimes.  My frame of reference on survival is limited to my own experience – which is different from my friend’s situation.  Dealing with the basic conflicts of currently feeling pretty good, the probability that things will get worse, the desire to be positive, and the frustration of feeling in limbo has got to be incredibly hard.

A couple of weeks back, there was a segment on NPR’s This American Life with Katherine Russell Rich, who has lived with cancer for twenty-three years, eighteen of these at Stage Four.  She has written an excellent memoir of her life with cancer – The Red Devil : To Hell with Cancer and Back.  I’m most of the way though this now, and hearing her perspectives on life is very powerful.  Her experiences with doctors, treatment, work, and everyday life have been an education. 

Beyond the the fact she’s defied the odds so much, the thing that caught my ears and eyes about Russell’s story is that she tells us that it took her fourteen years to come to terms with the fact that she’s still here.  In her words – she finally feels “like there’s not plexiglass between her and the world”.  I would highly recommend listening to the This American Life segment on Kathy.  It begins 44:30 into the program and is definitely a worthwhile twelve minutes.

January 15th is anniversary of her stage four diagnosis.  On that day this year, she posted the note below to a discussion board on breastcancer.org, saying “I’m still here”.  Despite the daunting odds that people living at stage four face, she wants them to know that it’s possible to live.  Each year, she debates whether or not doing this will have the intended positive impact, or whether it simply draws attention to Rich being a statistical anomaly.  In reading some of the threads on Kathy’s posts, I have to believe that hope makes a difference.

 

 

I’m writing from India to say that as of today, I’ve been alive 18 years with Stage 4. If someone had told me then that I’d be in India–or anywhere–18 years down the road, I’d have thought they were deluded or being cruel. As I’ve mentioned before, there was no hope when I was rediagnosed, and then somehow there was. Just as cancer can take some unexpected  bad turns, it can take some unexpectedly good ones too.

This computer’s going to go down any minute, so I’ll end here, but not before saying I wish everyone the most unexpected year, in the best way.

Much love,

Kathy

a post from kathy36 on the discussion board of breastcancer.org

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