Showing posts from 2015

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor
Lung Cancer Awareness Month 2015
Day 16: Kelli “Cat” Joseph, Survivor “If there was ever a time in history to get lung cancer, that time is now.”
Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
My own observation about the online lung cancer advocacy community: although smoking causes an awful lot of lung cancer, most advocates whose work I know about are never-smokers. Why aren’t more people with a history of smoking involved in advocacy work? I don’t know. The stigma against lung cancer runs deep in our culture, so shame and guilt may keep people silent, even when it’s in their own best interest to speak up.
I’ll say up front that I am an ex-smoker. I quit in 1981 after accumulating a 7 pack-year history. My cancer’s driver mutation is not usually se…

Profiles in Lung Cancer: Naomi Farley, Caregiver

Profiles in Lung Cancer: Naomi Farley, Caregiver
Lung Cancer Awareness Month 2015
Day 4: Naomi Farley, Caregiver “Hope is so important...”
November is Lung Cancer Awareness Month, and each day a lung cancer blogger will share a profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.
I knew that I wanted to interview Naomi Farley when I saw that she is a caregiver and that her husband Corky is in a clinical trial. When I talked to her on the phone and read her answers to my questions, I discovered that there are parallels between Naomi and Corky’s life and the life that my husband Robert and I share. Both couples have been together about 40 years, and each family has a child mid-20’s in age. Corky and I share the same EGFR driver mutation, and both Corky and I have retired due to our lung cancers. Finally, Corky and I are in the same clinical trial, a TIGER trial testing the efficacy of CO-1686, also kno…

Knitting Blog: Well Traveled Socks Even Before Being Worn

It’s been too long since I last blogged, and I’ll have a quick update at the end of this warm-up post.
Late last fall my sister had a wonderful opportunity to go on a cruise on the Danube. It was a working vacation, because she was representing the public radio station where she works, but her price to be there was commensurate with the fact that she was on the job. She had a great time, and brought back a skein of yarn for me.
Opal Sock Yarn, from its motherland!
Opal makes the most interesting pre-printed sock yarns, with a wide variety of ever-changing patterns. This one appeared to be designed to be a bit chaotic, from the tiny thumbnail picture on the yarn’s wrapper:

These were a pretty fast project, taking me 4 months to knit while interspersed with other knitting projects. Then again, sock knitting is what I do on the road and in medical waiting rooms and I spend a lot of time in such places these days.
Focus on the socks:

Gosh, my pattens came out a lot like the ones on the b…

Why I am Using Research-Based Medical Treatments Instead of Naturopathic Treatments

I’ve heard many stories of people being sent links to websites promoting alternate naturopathic treatments for cancer by well meaning friends and family. It finally happened to me. I got an email from an acquaintance who told me she believed that I was making a mistake signing up for a clinical trial, and that I should be using natural treatments based on diet and supplements such as turmeric and IV vitamin C. She quoted the saying “Let Food be your Medicine”, and pointed me towards the website thetruthaboutcancer (no, I am NOT going to link to that site from my blog, it gets enough traffic). She also told me that I was signing up to be a guinea pig.

This blog post has been in the works in my thoughts ever since. I do not think that this good-hearted person is on the right track, and sincerely hope that, for her sake, she never develops cancer and never has to put her alternate treatments to the test. In thinking about what she said, however, I finally crystallized for myself the reaso…

Gifts For My First Cancerversary

I’ve discovered that celebrating a cancerversary, the day you were diagnosed with cancer, is something that people like me, who are living with cancer as a chronic disease, tend to do. At first it made no sense to me: WHY THE HECK WOULD ANYONE CELEBRATE SUCH A THING??? Now that I’m at my first canceversary, however, it makes a lot more sense.
It means so far, so good. And when 50% of the people who receive your diagnosis don’t make it through a year’s time, I’ve already beaten some pretty nasty odds. In my case, I feel good, and I am stepping forward into another year of living with cancer with realistic hope that I have some more good time ahead of me.
I’m even celebrating with gifts! The first one: a short drug holiday. I took my last dose of Tarceva on Sunday, and will take my first dose of Rociletinib on Thursday. It’s darn exciting to have three precious days of reset and detox. Note to self: go drink another glass of water.
The second gift: a new and promising treatment. 
The t…

Spending Quality Time with M. C. Escher, Mathemagician

Over the winter, the National Gallery of Canada hosted a major exhibition of the work of M. C. Escher. It turns out that they have one of the largest collections of Escher’s work in the world, because Escher’s son George lived in Nova Scotia and gave a large number of prints to the museum. I was fortunate to go to Ottawa before the exhibit closed to spend some leisurely, up-close, and high-quality time with 54 of Escher’s prints.
There is an advantage to going to see an art show midweek during the day after it’s been open for a while: you will have the gallery pretty much to yourself, and can take as long as you like looking at each image. The disadvantage was that there wasn’t enough time for me to go back up to see the show a second time. This show would have been well worth a second viewing.
Escher began his career as a landscape artist working in Italy. I didn’t know this, and I was stunned by the images he created during this period. Here is Bonifacio, Corsica, a woodblock print…

Bad luck? Good luck? I'm confused!

I’ve thought about luck for a long time. For me, luck is what happens in our lives that we cannot control - which is a big chunk of all of our lives. We learn early to judge, so we label the stuff we can’t control “good luck” and “bad luck”. When I look at the luck in my life over the past year, I find myself using those labels often to describe what has happened. I wonder how useful they are.

All of my exercises in writing a short biography, which is something you do if you are active on social media sites, as I am, have included the word luck. One of my earliest attempts at summarizing my life included, “Although no one will remember me when I die, I am one of the luckiest people who has ever lived.” Since my lung cancer diagnosis, I’ve decided those words would not be easy for another to understand, whether or not I still believe them, so I’ve rewritten that part of my short biography as, “I’m very content to be one of the little people, whose names aren’t recorded in history books…

Knitting Blog: Stashbusting in my Favorite Color

When I was diagnosed with stage IV cancer, one of my very first thoughts was that I would never knit another sweater for myself. It’s hard to justify the work if you aren’t going to be around very long to enjoy it, right? However, I have changed my attitude, and have proceeded with my knitting with two precepts in mind:

1) I do not know what the future shall bring.

2) I can knit whatever I want to.

A particular group of eight skeins in my stash was calling to me. Beautiful Classic Elite Yarns Inca Alpaca in a rich, complex shade of coral. I bought the yarn as a closeout when a yarn store went out of business, and realized later that while the yarn was a bargain there were also three dye lots included in that bundle of eight skeins. Mixing dye lots is a perilous business, as yarn dying can vary slightly from batch to batch. It’s sad to realize that you have a demarcation line in your work where the color changes, and once you see that, you cannot unsee it.

I finally decided on a project wh…

What It's Like to Write and Give a Sermon on Mortality

The material below is adapted from a piece I have submitted to the patient support website.

The phone call took me by surprise. Jon M., a man I’ve known and respected for many years, called me on behalf of the Worship Committee of the Unitarian Universalist Church of Canton, New York. He told me that it was hard for him to call me, because he was asking me to give a sermon at the church on my experiences and thoughts as a stage IV lung cancer patient. My response surprised me even more. I said yes. I knew it wouldn’t be easy, but even more than whatever good such a sermon could do for others, I knew that doing this work - writing and delivering a sermon on my discovery that I am mortal - would be good for me, and it would be consistent with how I live my life. I also could not think of a more supportive audience for what I might have to say. I agreed to give the sermon on March 1, 6 weeks from the date of the call. My gut told me not to wait too long.

My gut was correc…

Please support the EGFR Resisters Research Fund!

To help improve outcomes for people like me with EGFR mutated lung cancer, please donate to the EGFR Resisters' Research Fund. All donations are tax deductible and are in a restricted fund with the Bonnie Addario Lung Cancer Foundation, a four-star rated charity. Thank you from the bottom of my heart!