"Be conservative in what you do; be liberal in what you accept from others.” Jon Postel

"Knit on, with confidence and hope, through all crises." Elizabeth Zimmerman

"My job, for the rest of my life, is to AMPLIFY." Me 10/29/2016

Sunday, November 13, 2016

Knitting Blog: A Legacy in Knits Part II

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.

It was a delight to knit my own yarn. Spun from combed merino top, the yarn was warm and elastic between my fingers. It was also fun to finish a project quickly - that is if you don't include the time spent spinning the yarn.

The finished product:






























Kinda gappy around the armholes in the back, but I love it. I’ve been wearing it using a shawl pin to hold it closed in the front. I will wear it a lot this winter. 

I was wondering about this vest’s legacy as I was making it. Who the heck would want this some day? I’m pretty sure that it’s not to my daughter’s taste for herself. Well, my best friend Bonnie loves it, and it fits her. I hope that she gets it someday when I am finished with it. The vest will be a big hug from me to her, from the twist in the yarn to the loops of the stitches.

My final project for this post is a lace shawl that was two days short of being two years in the making. What that means, of course, is that most of the time I was NOT making it, and it was in a bag waiting patiently for me to get back to it. I cast it on a few months after being diagnosed because I thought It would be good to do something with the yarn, but realized not long after that I didn’t need a lacy shawl. I wasn’t sure if I even wanted it. Earlier this year, though, I took it out, pondered working on the project again, and realized that the shawl wasn’t for me. It’s for my sister Julia. All at once knitting this shawl was easy, and it was my travel knitting this summer.

Lace shawls make wonderful travel knitting. They take up little room in luggage or a purse and are not intimidating on an airplane, because the needles are small. I find them easier to knit on the go than socks, because the stitches are more open.

The pattern is by Myrna Stahman from her book Stahman’s Shawls and Scarves. It’s a Faroese style shawl and features extra shaping in the shoulder area so that it drapes beautifully and stays put when you move. 

Here’s a montage of the finished shawl being blocked. Ah, blocking - it’s magic, taking a crumpled thing and turning it into a smooth, fluid garment. 
































And here is a picture of the shawl on my dear sister Julia. I gave it to her last weekend. Do you think she likes it? Now the shawl is part of her story.






Monday, November 7, 2016

Knitting Blog: A Legacy in Stitches Part 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 survive me. I have sweaters that are over 20 years old, and they look nearly as good as new. If you use good yarn and the moths stay away, knitting can last for decades. Of course, good yarn is key. I made many sweaters from crappy yarn in my early days of knitting, and they are long gone from my closet.

As I knit any project these days, one of the things I think about is who will use the object I’m creating after I’m gone. That has become part of my personal mission statement for the project. I don’t worry about socks, someone will want them. I’m being mindful of the final disposition of other items; it’s hard to think of spending my precious time knitting something that I will use for a relatively brief time, and that then will languish, unwanted and unloved.

I’ve completed five major projects in the past 14 months. I’m confident each of them will find a home someday - or already has one, because two of the projects were gifts. I’ve divided those projects between two blog posts.

The Lush Alpaca Cowl

Special yarn needs just the right pattern, and this was special yarn - Owl Ridge 100% alpaca in “Ortiz”, a lovely natural deep silver. The name of the yarn most likely comes from the alpaca who provided the fleece that became the yarn.  A search on Ravelry turned up the perfect pattern: Cowl Fushia by Izzie Ophelie, a French designer. This pattern is an undiscovered gem.



I don’t know who will claim this some day. Karma suggests that it should be my sister, because she gave me the yarn. It’s not going to molder in a drawer, because it is buttery soft and looks great.

Robert’s Vest

My husband has loved getting knitted vests from me over the years, and I decided it was time to make him another, from a high quality pattern and materials. The pattern comes from Veronick Avery, one of my favorite designers. Robert is picky about yarn, feeling the prickle easily, so I chose Berocco Ultra Alpaca in colors that reminded me of the very first vest I knit for him. This one is a lot nicer.



One nice detail - a turned up hem rather than ribbing at the bottom of the vest. The vest glides right over the belly, and is much more flattering on a guy than one that pulls in below the waist.

Travel Shawl

This project is emotionally satisfying on many levels for me. It is a big square shawl that can also be a blanket, knit from a US sourced yarn in a fascinating colorway (Peace Fleece’s “Distant Maples), and it is another Veronik Avery pattern. This is a comforting piece that I can envision using in many ways through sickness and health.

It is also one where the legacy was clearly in mind with every stitch I knit. I want my daughter to have this shawl some day. I love the color, but I also chose the yarn because I knew that she would love it as well.

She took some evocative pictures of me wearing it at a favorite place.






















Here is a photo of the yarn. It is a blend of purple and a bright lemony green with bits of blue. Who would guess what a fascinating color would result? The intent is to echo the bark of maple trees after the leaves have fallen.


And with that, I will end this post because it is long enough. Part II with two more projects will be posted in a few days.




Thursday, October 13, 2016

Mutation Envy


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, they discovered that the patients who responded to gefitinib had an epidermal growth factor receptor mutation in their cancer, or EGFR. The discovery set off a flurry of research into mutations in lung cancer tumors, and the current state of this research looks like this:



Source: “ALK Positive Lung Cancer” presented by Shirish M. Gadgeel, MD, at the Targeted Therapies in Lung Cancer Patient Forum, University of Colorado Cancer Center, August 20, 2016.

These mutations are nearly always somatic, not inherited, existing only in the cancer, and not in the rest of the body. Three of these mutations, EGFR, ALK and ROS1, have at least one FDA approved targeted treatment, and clinical trials are searching for effective treatments for others. In the case of EGFR mutations, the one I know best, there are now three generations of targeted therapies available, one of which treats a new mutation that arises during initial treatment. Mutations upon mutations!

Upsides and downsides, advantages and disadvantages, it’s always a mixed bag in Cancerland if you are stage IV and trying to live with your cancer as a chronic disease. Having a mutation can give you an edge and extend your life by giving you access to targeted medications that are easier on the body than standard chemo, but different people with the same mutation respond differently to treatment. Some may be stable for years on a targeted therapy, while others may develop resistance rapidly. There are no guarantees. I had a shock of realization when I saw these targeted treatments described as “palliative” in an article. They can hold the disease back and improve quality of life, but they do not cure.

Resistance is inevitable when you rely on targeted treatments. It has happened to me. After three months of treatment with erlotinib, my cancer had almost entirely melted away. At six months, however, it proclaimed, “I’m back”, and by ten months, when I changed treatments, it had grown to be larger than it was on diagnosis. I’ve heard of one case of a man who seems to have had a total response to erlotinib that has lasted for 10 years and who chose recently to go off treatment. He is a remarkable exception, and is truly stepping out into unknown and unique territory. It is more usual for patients to get an initial reduction in their cancer followed by stability  that lasts until resistance develops and the cancer starts growing again. If you are lucky, there will be a next generation drug you can switch to for another good year or so. If not, you join the rest of the lung cancer patients sitting in the chemo infusion chair.

Just because you have a mutation does not mean that you can find a treatment specific to that mutation. The science of identifying mutations and finding effective treatments is in its relative infancy. A good example is KRAS. As of this writing, no targeted therapy has proven effective in trials, and standard treatment (and prognosis) is the same as for a patient with no targetable mutation. Thus, “Take my mutation. Please.”

Ironically, having a targetable mutation may mean other good treatments are less likely to help you. Immunotherapy is a case in point. This is the hottest development on the lung cancer scene, and two FDA approved drugs are now available for patients who have had chemo. A very recent study demonstrates that one of these drugs, pembrolizumab, is more effective than chemo in newly diagnosed patients, a finding which is going to rapidly change how lung cancer is treated. Meanwhile a third drug has successfully completed trials and is expecting imminent FDA approval. However, subgroup analysis indicates that response rates to immunotherapy in people with the EFGR mutation are lower than they are to crappy second line chemo, and indications are that the ALK and ROS1 folks are in the same situation. For those of us with these mutations, immunotherapy is probably a Hail Mary treatment to try after everything else has stopped working.

I’m now on my third targeted therapy for EGFR mutations. I took erlotinib from August 2014 through June 2015, and developed the resistance mutation T790M during this first line of treatment. I then enrolled in a clinical trial for rociletinib. This drug did an impressive job of shrinking my cancer by 43%, but it was also very toxic. Fortunately I was able to slide on over to osimertinib when I was booted from the trial in February 2016. This EGFR and T790M inhibitor had been FDA approved only three months earlier! I’ve been on it for eight months now, which frankly is longer than I expected to benefit from the drug, because I had already taken a T790M inhibitor for eight months. I’m stable and feeling great. We shall see what we shall see when I have scans in December.

The future I am hoping for is one with many effective treatment options so that it doesn’t matter anymore whether you have a mutation in your cancer, or which one it is. I’m looking forward to the day when all patients with stage IV lung cancer can live a goodly portion of their expected lifespans with good quality of life. Then we won’t be envious of anyone, or at least of each other.

References:

For a comprehensive and detailed discussion of lung cancer mutations and treatments, I recommend the following article, written by Lecia V. Sequist, MD, MPH and Joel W. Neal, MD, PhD.

The history of gefitinib:

On pembrolizumab’s successful trial as a first-line treatment:

On nivolumab vs. docetaxol, with data showing poor response to nivolumab in EGFR patients included in discussion portion:

General presentation by J. Soria, includes slide from Hellman presentation at WCLC 2015 showing poor response to pembrolizumab in EGFR patients (original presentation slides behind paywall) - 48th slide:





Tuesday, September 20, 2016

Remembered

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. The other speeches talked about how the kitchen will be used in the future and about the partnerships that made it possible. I talked about the history of the facility and how the kitchen gives this Cooperative Extension agency its heart. There is more about the background of the project in the attached newspaper links.

Best of all for me were the people who came to remember me - friends, former coworkers, and family. My sister Julia took a day off from work during a busy time to bring our 90 year old mother to the dedication. Mom is a retired Cooperative Extension Foods and Nutrition Agent, and it seemed especially fitting to see her standing in the kitchen.


IMG_4528-2016-09-13-00-55.JPG
From left: Julia Figueras, Jan Hickman, Anita Figueras, Robert Best
Photo credit: Judy Andrus Toporcer, www.WizenedEye.com

Newspaper articles:

http://www.watertowndailytimes.com/news05/new-commercial-kitchen-celebrated-at-st-lawrence-countys-cornell-cooperative-extension-farm-20160912&template=mwdt

http://www.northcountrynow.com/business/new-kitchen-cornell-cooperative-extension-canton-could-be-big-help-farmers-looking-market

Remembered

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. The other speeches talked about how the kitchen will be used in the future and about the partnerships that made it possible. I talked about the history of the facility and how the kitchen gives this Cooperative Extension agency its heart. There is more about the background of the project in the attached newspaper links.

Best of all for me were the people who came to remember me - friends, former coworkers, and family. My sister Julia took a day off from work during a busy time to bring our 90 year old mother to the dedication. Mom is a retired Cooperative Extension Foods and Nutrition Agent, and it seemed especially fitting to see her standing in the kitchen.


IMG_4528-2016-09-13-00-55.JPG
From left: Julia Figueras, Jan Hickman, Anita Figueras, Robert Best
Photo credit: Judy Andrus Toporcer, www.WizenedEye.com

Newspaper articles:

http://www.watertowndailytimes.com/news05/new-commercial-kitchen-celebrated-at-st-lawrence-countys-cornell-cooperative-extension-farm-20160912&template=mwdt

http://www.northcountrynow.com/business/new-kitchen-cornell-cooperative-extension-canton-could-be-big-help-farmers-looking-market

Wednesday, July 13, 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, it was weird to have my distance vision apparently improve. That has changed as a white mist deepens over the whole world almost daily. Now my near vision is weakening. I have turned on accessibility options on my electronic devices, which is a big help. Sock and fine lace knitting have been put aside for now, and I have begun a sweater in much bigger yarn. Going from 8 stitches per inch to 4 stitches per inch is just like turning on accessibility options - double the font size!

I have given up driving until after surgery. I certainly should not be driving at night. Trying to drive my husband home from the hospital after dark last week was a failure, as the parking lot looked like a lawn and I struggled to see where the road was. (He had broken his thumb while we were splitting wood, and he was the one to drive home.) Right now we are having an enforced staycation as he recovers from arthroscopic knee surgery. We had an epic grocery shopping trip this past weekend, and are all set to stay home for a while. Friends stand ready to help as needed.

I feel a great deal of sympathy for the genteel ladies in 18th and 19th century novels, who lose their ability to support themselves with fine needlework when their vision weakens. I’ll say this for knitting: many experienced knitters can knit by feel alone. To a limited extent, I can as well.

Cost/benefit analysis of medical procedures is something I think about, and here I am, having more expensive medical procedures when the length of time I’ll be able to use those shiny new intraocular lenses is a great unknown. Still, this is a major quality of life issue, and I am grateful for excellent health insurance which will pay for these surgeries without a quibble.

Sunday, July 3, 2016

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 nights at the hotel where the conference was held. I am very grateful for this travel assistance, awarded to many first year attendees, because it made it possible for us to find out how valuable conferences can be. It was also terrific to avoid the all-day car trip that would have been necessary otherwise. Robert has been dealing with a painful knee for several months, and flying was a lot less wear and tear on our bodies. 

It was heartwarming to arrive at the conference site and enjoy mutual instant recognition with many of the people I have met on the Internet since I started reaching out to the lung cancer community. The feeling of comfort grew as the three days passed. The conference organizers made sure to mix us up so that we would meet as many people as possible, and I discovered that I could sit next to anyone and enjoy a friendly, informative, supportive exchange. Lung cancer patients are a tribe, and conferences are where we gather to celebrate and support each other.

They are also where we gather to learn. In the course of three days, I attended an intensive day devoted to improving advocacy and outreach and sessions on research, nutrition, clinical trials, and story sharing. There were also some sessions for caregivers that Robert attended, though he said those sessions were much more emotionally searing than the concurrent sessions for patients and survivors.

Besides the formal sessions, there were serendipitous meetings with other attendees in the unscheduled times. Where else could we meet a couple in the bar where the man had been in the same clinical trial I was in and had had all the same side effects, plus rapid onset cataracts (which I was beginning to develop)?They emailed me the name of the doctor who had fixed his eyes, in case I needed to see a specialist in the future. Where else could I introduce myself to one of the doctors who discovered the driver mutation that I have, and enjoy a very warm and informative short conversation?

What did we look like as a group? LUNGevity had a very talented professional photographer there named Randy Elles, and he took this wonderful group picture. Both Robert and I are in this picture.



Randy Elles also took portraits of anyone who visited his photo booth, and he took this picture of Robert and me:


















What was Robert’s take on these experiences? He’s been letting me be the one who digs up information, and he agreed to go with me to these conferences without being excited by the prospect of attending workshops. When I asked him, he said “I wasn’t bored.”

It turns out that there many conferences, many more than I could possibly afford to attend. A few weeks after the HOPE Summit, the Lung Cancer Alliance held a conference in Washington DC where participants got to go to Congress and advocate for increased research funding. How cool would that be? Recently, Free to Breathe held a Lung Cancer Leadership Conference in Minnesota, also focused on advocacy and including updates on research into the biology of metastasis. Then there are all of the professional conferences such as the ASCO conference held in Chicago in June, many of which are very happy to admit patient attendees (and collect an entrance fee in the process that can be pricey).

Right now I am working on the logistics of attending a different kind of conference, the Targeted Therapies in Lung Cancer Patient Forum, to be presented by CancerGrace in August. There will be no sessions on advocacy or fund raising, simply a group of oncologists getting up-to-date information to a group of patients. We have Robert’s knee surgery and my cataract surgeries to get through between now and August 20, but I am increasingly confident that I will be able to attend. I can hardly wait to get together with my tribe again - and to learn information specific to my lung cancer variant that just might extend my life.

And, I’ve estimated the cost of a return trip to the HOPE Summit next year, and I’m working it into the family budget.