Showing posts from July, 2016

Going Blind

Feet on the sidewalk I feel kinda sick Hands out front I need a white stick Blurred in the morning Bruised at night Falling in the darkness Could've been a fight
My blind life I can’t see the road I can’t see the light  - My Blind Life by Chris Dreja, sung by The Yardbirds
Those lyrics are exaggerated, but I am going blind. Thanks to rociletinib, the experimental drug I took for eight months, I have rapid onset cataracts.
From Wikipedia
Fortunately, this problem can be pretty easily fixed. Massachusetts General Hospital sent all of its patients who took rociletinib and developed cataracts to a specialist from Tufts University, but we are lucky to have a very skilled eye surgeon locally. He has scheduled me for surgery as early as possible; I get my right eye fixed on July 26, and my left eye fixed on August 9.
It’s a fascinating experience. The first sign was in late April, when my eyeglasses no longer corrected for distance vision. After years of not seeing anything in focus without glasses, i…

Conference Fever

Does it sound strange to spend a weekend with 300 lung cancer patients and caregivers? Does it sound gloomy or frightening? It turns out that if you are a patient or caregiver, such a weekend could be a highlight of your year, one filled with hope and fellowship.
In late April, Robert and I set out on a two week trip that combined conference going with vacation. Our first stop was Burlington, VT, where we attended a day-long Lung Force Expo. This was an interesting day, filled with good information about managing one’s health with a serious lung disease and with information about the great promise of lung cancer screening. I was able to meet some fellow patients and some doctors who are relatively close to me in what is a terrific little city to visit. It also served as a warm up event for what was coming up next: the annual HOPE Summit put on by LUNGevity in Washington, DC.
We flew from Burlington to DC, thanks to a travel grant from LUNGevity that paid for my airfare and for two ni…