scifiknitter

A new knitting goal for me is to envision the next person who will use any knit that I make for myself. I am still busily knitting for myself, because I love wearing clothing that I made for myself, and knitting is my preferred craft - and because it is harder than you would think to knit something for anyone else. I’ve gone wrong more often than I care to admit, giving a hand knit that I was proud of, only to see a lukewarm smile on the recipient’s face. This particular project, the Endless Circle Vest designed by Julie Farmer, is especially personal, because I spun all the yarn for it. That process took a lot longer than I expected, and I ended up with a bulkier yarn than was my goal when I started the project. The yarn was consistent, though, and very knitable, so I searched for a project that would work with the amount of yarn I had and that would be forgiving of a yarn that wasn’t mill perfect. The vest is kind of funky, but so is the yarn, and so, for that matter, am I. ...

I continue to knit nearly every day. These days I think of my knitting as my legacy in stitches. Legacies. What will persist beyond our lives? This is something that surely other people think about when they realize that the end of their lives may be nearing. When I think of my life and my work, I realize that my knitting is the work that might endure the longest. My accounting work? The general ledgers of each year I closed will live on as PDF files on a server in Ithaca, but with a document retention schedule of 6 years for nearly everything else, almost every piece of paper I carefully filed away during 13 years of work will be shredded within five years time. I did leave the organization in a healthy financial position so it is more likely endure for many years, and there is a plaque on the wall of a kitchen memorializing my name and my work. I cannot take credit either for the work that the agency continues to do or for its continued operation. My knitting will surviv...

Seen in a lung cancer foundation’s chatroom recently: A: I wish I had a mutation. B: I’ve got one. If you want it, you can have it. This is something we don’t talk about in the lung cancer community, at least not out loud: that we might be envious of someone else’s cancer mutation. While personalized medicine is still an ideal rather than a reality, some lung cancer patients find themselves on the frontier of a different approach to medicine, one where each person’s treatment is based on her or his disease’s genetic profile. in 2003, a medicine called gefitinib was approved by the FDA for treating lung cancer in all patients who had had chemotherapy. After additional research, this approval was rescinded in 2005, because the drug did not extend life over the population of patients as a whole. Doctors noticed, however, that the medication helped a minority of patients a lot, even as it didn’t help other patients at all. When researchers investigated why this was so, the...

Several years ago I set about writing a condensed biography to use on my blog and on other social media sites. As I’ve changed the bio over the years, I have kept one phrase: “I’m very content to be one of the little people, whose names aren’t recorded in history books and who are remembered only by family and friends after they die.” Perhaps memories of my voice and my face may fade, but it seems that my name will be around for a while. I had a kitchen dedicated to me on September 9, 2016. Planning for the kitchen was well underway at the time I retired. Since then, my former boss and Executive Director of the agency, Patrick Ames, put together the funding for the project. What made the project possible was a change in funding rules that allowed USDA Rural Development to partner with the agency. The dedication ceremony was as good an experience as I could have imagined. There were speeches by State elected officials, a County executive, Patrick, the Board President, and me. Th...

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....

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 f...

During a clinical trial clinic visit in January, my trial coordinator at Roswell Park Cancer Institute asked me if I would be interested in speaking before the FDA’s Oncologic Drug Advisory Committee about my experience as a patient taking the experimental drug rociletinib. Clovis Oncology, the company that makes and is testing the drug, was hoping to receive accelerated approval to start being able to sell this drug on the market, and a hearing scheduled for Tuesday, April 12 before this important advisory committee was key. The company was looking for patients to speak about their experience with the drug.  I immediately said yes. Such opportunities are rare, and it’s exciting to have an opportunity to be part of the important process of drug approval beyond taking a drug as an experimental subject. As a bonus, the hearing would be held in Silver Spring, MD, near where our daughter lives, and I would get to see her and her husband. In February, I talked with an executive...