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

Monday, November 16, 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 seen in smokers so smoking probably didn’t cause it per se, but no one knows whether or not the first mutation that started me down this path happened back then, waiting patiently for other mutations to join it and create a cancerous cell. This post is Kelli’s show, not mine, but I have first hand experience from both myself and my loved ones of how cultural influences can make it easy to smoke, and of how hard it is to quit.

Kelli “Cat” Joseph is open about being an ex-smoker, and she is also open about believing that smoking caused her cancer due to the type she has. She quit her tobacco addiction 6 years before she was diagnosed with lung cancer. I’m very happy that she was asked to be interviewed during Lung Cancer Awareness Month to share her perspective on and experience with this disease. 

I interviewed Kelli over the phone, writing furiously as she shared her experience and ideas. She also shared her warmth and humor with me, and I hope you can see a glimmer of them in the interview.

Kelli, tell us about yourself.

I’m a 48 year old lung cancer survivor, currently NED (no evidence of disease). I am a wife to a gorgeous, caring, patient husband, and we are parents to a beautiful, loving, smart teenage boy who has been so resilient throughout the ups and downs of this cancer ordeal. He is amazing. I’m also a business owner. I have a bar called The Cuckoo’s Nest.

That sounds like a recipe for being very busy. Is it fun to be a bar owner?

Yes it is, and it’s even more fun now that the bar is smoke free. When I think of how much second hand smoke I breathed in from the age of 17, I’m very happy that smoking in my bar is now against the law.

What is your diagnosis, and what treatments have you had?

I was diagnosed with squamous cell lung cancer on Friday the 13th, January 2012 after a year of being treated for asthma. Nope, I didn’t have asthma after all. I had a lower and middle lobectomy of my right lung, followed by 35 rounds of radiation. Then I had a recurrence in a lymph node on my heart in 2013. My local doctors wouldn’t touch it so I went back to Northwestern University in Chicago, where the awesome surgeon who did my original surgery said she could take care of it. She did a VATS (video assisted thoracic surgery) procedure that involved going into the pericardial sac. I struggled with pneumonia and shingles for a year while recovering from this surgery. I’m also thankful for the fantastic, groundbreaking lung cancer oncologist who keeps me alive today. I’ve been NED since my last surgery.

What is a typical day for you?

I keep up with lung cancer social media as best as I can, but my family and business keep me busy. I do my best to enjoy each day. I couldn’t do any of this without help from family and friends because tiredness and nerve pain are still issues for me.

What is something that we might not know about you?

I’ve been heavily involved with an online smoking cessation support community for 12 years. Not everyone with lung cancer was a smoker, but the majority were and the more people I help quit now, the less disease we’ll have in the future.

My quit smoking sponsor’s birthday is August 1st which is also World Lung Cancer Day, and he was devastated when I was diagnosed. This year I decided to go all out to celebrate World Lung Cancer Day: I went sky diving. I loved it, and I’m going to do it again!

Here’s an odd story from my life: 18 months before I was diagnosed my beloved cat Rocco died of lung cancer. (Yes, I had smoked in the house when he was young.)

What do you want us to know about lung cancer?

The polarization between lung cancer victims who were smokers vs. non-smokers needs to end now so that we have a chance to get more funding. Funding for AIDS increased when people with AIDS stepped forward and said we don’t deserve this, no one deserves this. We need all lung cancer people to unite and step forward in the same way. We perpetuate the stigma when we ourselves in our LC community are shameful about smoking history.

Every lung cancer patient has had the experience of telling someone he or she has lung cancer, and having that person respond by asking “Did you smoke?”, rather than by saying they are sorry, or asking how you are doing. How do you respond to that question? Does it sting?

This question doesn’t sting me, because I hold myself accountable for my prior actions. I love this question because it gives me a chance to advocate against cigarettes. I grin and say, “Yes I did. If you smoke or have a loved one who smokes, please, please quit or help them to quit!” Hey, I don’t mind being a bad example, I’ve been one all my life one way or another. I’ll admit, there are ways of being a bad example that are a lot more fun.

The lung cancer advocacy effort focuses on a message that “anyone can get lung cancer”, and can get perturbed when major cancer organizations focus on smoking cessation as part of lung cancer awareness campaigns. How can we better balance positive attention to our disease with an important message of disease prevention that could save many lives?

Common sense would dictate that if we could eliminate smoking, we could eliminate 80% of lung cancer cases. Just think of how many resources that would free up to help non-smoking lung cancer victims. We need to come together and support lung cancer prevention as well as better treatments.

I support low dose CT scans for everybody starting at age 30, with repeat scans every five to ten years for those who have negative scans. Anybody can get lung cancer, so let’s screen everybody, not just people over age 55 with a long-term smoking addiction. I hope that’s something the entire LC community can also support.

What brings you hope?

If there was ever a time in history to get lung cancer, that time is now. New discoveries are happening in leaps and bounds. Government funding is increasing but we still have a lot of work to do to make it comparable to the funding that is awarded to other, less deadly cancers.

Twitter handle: @thecuckoosnest

Yesterday’s interview with Lucy Kalanithi was on Lisa Goldman’s blog Every Breath I Take.

Tomorrow’s interview with Kim Ringen will be on Tori Tomalia’s blog A Lil Lytnin’ Strikes Lung Cancer

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Wednesday, November 4, 2015

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 known as Rociletinib, for EGFR patients who have developed a T790M mutation during treatment. Corky's trial is at USC Norris and mine is at Roswell Park, a continent apart from each other. He’s in cycle 10, and today I’m on the road to Roswell Park for day one of cycle 8.

Naomi’s connection with lung cancer:  

I am my husband Corky’s caregiver. Corky was a coach running an after school athletic program when he was diagnosed with stage 4 adenocarcinoma. He has never smoked in his life. Our oncologist tested him right away for a genetic mutation, and found he has the EGFR mutation. Corky went on Tarceva as soon as we had his biopsy results. Tarceva was effective for 2 1/2 years until earlier in 2015 when he enrolled in the Clovis CO-1686 clinical trial. He is now in Cycle 10 of the Clovis trial (end of October 2015) and doing very well. 

What is a typical day for you and your husband?  

I go to work as a mortgage banker and my husband gets up, checks blood pressure and blood sugar and then takes his first dose of the day. He journals his meds and vitals. One to two nights a week he coaches an adult basketball league but he is retired and has not worked with kids since his diagnosis.  He is a night person, so he’s up late at night reading, researching online and watching sports.

Tell us something we might not know about you and Corky:  

There is always some kind of game on at our house: baseball, basketball, football, golf, track and field. If we want to watch a movie it's going to be after the game(s). 

What do you want us to know about lung cancer?   

The initial diagnosis is such a shock and very frightening, but we want people to know that with the rapid development going on with target therapies and immunotherapy it becomes more of a long term disease management lifestyle. And we hope that people getting diagnosed today learn of these options quickly as we did, because hope is so important when one is diagnosed with LC and it is stage 4. No one deserves this. My husband never smoked but still the assumption from outsiders is that he must have. We have learned how difficult it is to raise awareness of lung cancer due to the stigma. 

How do you and Corky divide the work that comes with managing a serious illness? Who does the research, takes care of record keeping, and asks the hard questions of the medical team?  

We share the work involved with this diagnosis. During the period when the doctors were staging his adenocarcinoma, he developed severe pain due to bone metastasis and was on morphine for 4 months. He went from being an active coach running an after-school athletic program to a week of hospitalization for pain management and then finally stability after treatment with a targeted therapy. This returned our lives to a new normal. He was not able to continue coaching and spent several months in a fog. As a result I managed the initial record keeping, but he soon recovered, recorded all of his meds, and started asking questions, reading, and researching. He wants me at all of his doctor appointments to help take notes and ask questions of the doctors because there are so many details to remember. We work as a team. I think it is so important for the doctors to hear from the patient, but I do a lot of gentle "filling in".

Tell us what it’s like to be in a clinical trial. How did you find out about the trial that your husband is in? What hoops did you jump through to get started? What is a typical day at the trial clinic like?

Being in a clinical trial is hectic at times but we are so grateful to be in it. We are also very conscious of how lucky we are to be close to USC Norris. We first heard about the trial from an acquaintance but at that time the first targeted drug was still working and the trial was not available near us.  After 2 1/2 years on Tarceva, our doctor said that Corky’s options were to go on a chemo cocktail every 3 weeks or wait a little longer for the trial to open at USC. The decision was left to my husband and he held out long enough to have another biopsy, which showed that he has the T790 mutation needed to qualify him for the trial. He entered the Clovis trial in early April 2015. I think many people would have been nervous about waiting (I was), but my husband Corky's courage paid off. Having another biopsy is a leap of faith that participants in clinical trials must go through. The doctors thought it likely he had the right mutation but it cannot be guaranteed. Hopefully in the not-too-distant future there will be blood or urine tests that will reveal mutations rather than requiring biopsies. There is a lot of fantastic research going on.

The first several weeks we were back and forth to the clinic often. Again, we’re so fortunate to live close by. We were told the specific trial he is in closed a few months after he enrolled, so we continued to feel fortunate. Within a month of starting treatment he could feel positive effects with no more severe coughing. Our first scan showed significant shrinkage, however since then the scans show stable rather than shrinkage. But stable is good. There are lots of side effects that are different from Tarceva’s side effects, but with persistent stable results we continue to feel grateful. 

A typical day at Norris starts at 7 AM with 8 hours of fasting prior and a stop at the lab where they draw 10-12 vials of blood. Then we see the doctor and research nurse. Vitals are taken, discussion of how he is feeling along with any side effects are noted, and then he is hooked up to the EKG machine. Once that is done we head out to a nice garden area to eat, take the morning dose and wait 2 hours. Then back we go to the clinic for another EKG before getting our supply for the next 3 weeks and heading home. The entire process usually takes 4 to 4 1/2 hours. 

We are now seeing the doctor every 3 weeks. Scans are every 6 weeks up until cycle 10 so every other clinic visit had a scan visit in between. You never know what side effects will develop. My husband developed bronchial spasms in reaction to the contrast dye given during CT scans after many, many scans and now has scans with no contrast. We just passed the 3 year anniversary of his diagnosis and are very grateful for the fact that he has been on targeted therapies from the beginning. Last week we found out the scans will be less often from now on.

Everyone at Norris is so upbeat and positive and kind. Even though we are surrounded by people facing incredible challenges, there is hope everywhere around us. 

What brings you hope?  

Research and our oncologist’s calm assurance that if this stops working we will try something else. Learning about others who are living with this diagnosis. 

What is your Twitter handle?  I’m Nay on Twitter, and my handle is @ChancesR3.

Yesterday’s post in this series was on Lisa Goldman’s blog Every Breath I Take.
Tomorrow’s post will be on Dann Wonser’s blog Dann’s Cancer Chronicles

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Saturday, September 26, 2015

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 ball band!

Here are gratuitous pics of me combining sock modeling and dog loving. All pics taken by my husband Robert.

Knit on size 1.5 needles (2.5 mm) in a basic toe-up design so that I could knit up all the yarn. They are on the tall side. I probably should have added a few increases towards the tops to make them fit my calves a bet better, but on the other hand, these are not going to fall down. I love them. Thanks, Julia, for the very cool yarn.

Now to my health update: I have passed the 15 week mark taking the trial drug CO-1686, and everywhere there is cancer inside me, there has been shrinkage, 43% on average. The side effects have slowed me down, however. For a while I had raging hyperglycemia and had to take metformin, which made me feel awful. I have lost about 15 pounds and had little energy for weeks. I’m using a different drug, Jardiance, to manage my blood sugars now, and am feeling much better. Here’s hoping that the pics above are as skinny as you will ever see me. Yes, my body image aesthetic has changed, and I think that being a bit plump, on the upper edge of the healthy BMI range, is beautiful. Gaining weight is a lot harder than losing it these days, and regaining those 15 pounds is going to be a long-term project.

Monday, June 15, 2015

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 reason why I will not pursue the line of treatments she would suggest.

It’s only outliers.

The first thing I appreciate about research-based medicine is its honesty. Medical scientists and doctors know that when it comes to advanced cancer, most of their treatments suck and have limited success. They keep track of their failures as well as their successes, and will inform you of probabilities of effectiveness if you ask for them.

Diseases and treatments have outliers - the people who have radical remissions, who have an exceptional response to treatment, who against all odds recover. The treatment I just stopped using, Tarceva, has its outliers. If you visit the patient support forums at websites like Inspire.com, you will find stories of people who have successfully used Tarceva for 4, 5, and more years, and even a lucky few who are NED (No Evidence of Disease). When my doctors talked to me about Tarceva, however, they did not promise me those 4 or 5 years, much less NED, or even suggest that such success might be possible. They told me about the median response of 9 to 11 months. They were honest with me.

The same goes for the experimental drug I have just started taking. I’ve been told that about 500 people have taken this drug, and about the range of side effects they have experienced. I’ve been told that data are incomplete because clinical trials are still in progress, but that initial results suggest a median response of 9 to 11 months.

When it comes to getting similar types of information about naturopathic treatments, however, no such data seem to exist. There are individual stories and testimonials. “I know someone who...” and “I heard about someone who...”, an occasional “I am someone who...”. The naturopathic doctors, however, do not seem to be collecting data about their successes - or their failures. Maybe there is some hurdle to collecting and communicating information that I can’t see, but it seems to me that practitioners offering treatments that are superior would have a strong incentive to join together to pool information that would prove the success of their approach. If naturopaths could do this, the cancer centers would be empty within days.

To be completely clear: yes, I want to be an outlier. I would love to be one of the people who beats expectations. When looking for an approach to get there, however, I’m distrustful of treatments that can offer me ONLY outliers, with only stories and anecdotes even proving that those outliers exist.

The path of research-based medicine has its outliers as well- outliers included in evidence that includes everyone, not just a few selected success stories.

I can only conclude that I really would be a guinea pig if I were to seek only naturopathic treatments.


Boring fact-based stuff I looked at while thinking about this post:

Being who I am, of course I looked for information on the Internet. I did a Google search on “survival data naturopathic therapies”, and did not find much in the way of scholarly papers or analytical articles. I did find the following:

- A compelling article written by pharmacist Scott Gavura, who sought out studies looking at outcomes for women with breast cancer who used only alternative treatments or refused treatment. He found 5 such studies. All of the studies show shorter survival times for women who refused standard medical treatment. https://www.sciencebasedmedicine.org/rejecting-cancer-treatment-what-are-the-consequences/#disqus_thread

- The abstracts for two of the studies discussed by Gavura. http://www.wjso.com/content/10/1/118/abstract


- A retrospective study comparing survival in lung cancer patients who received long-term integrative cancer treatment combining standard medical treatments with naturopathic treatments, patients who received short-term integrative cancer treatments, and control groups who received standard treatments only. The study purports to show that patients who receive long term integrative treatment have better survival times. The discussion discloses a significant flaw in the study: the control groups did not receive the same standard treatments as the integrative treatment groups, being much more likely to receive radiation rather than chemotherapy. In addition, standard treatment is not being compared to naturopathic treatments - every patient in the study received standard treatment. http://naturalmedicinejournal.com/journal/2011-12/benefits-integrative-cancer-treatments-lung-cancer-patients-0

- An article about integrative oncology featuring the work of Dr. Leanna Standish. Again, this article is talking about using alternative treatments in addition to standard medical treatments, not replacing the standard treatments. The number of patients involved is very small. http://www.medscape.com/viewarticle/813217

- As a counterpoint to the article just above, a discussion of how survival statistics can be skewed simply by excluding groups of patients from treatment, and therefore from the statistics, for example Medicare patients. http://scienceblogs.com/insolence/2013/03/07/the-cancer-treatment-centers-of-america-cherry-picked/

Tuesday, June 9, 2015

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 third gift: looking outside my window at the lovely rain falling on this beautiful world. Right now I am at peace and pretty much living my life day by day. 

The fourth gift: a new scarf I just finished a half hour ago.

The pattern is the Flower Scarf by Robyn Diliberto. I’ve made several of these as gift for others over the years, and finally made one for myself. It’s 100% silk, made from what is called a silk cap. A silk cap consists of layers of silk, each layer from one cocoon made by a silkworm. The cap can be dyed, and the one I bought was dyed with black and a brilliant rosy red. To knit with a cap, you peel apart the different layers then take each round circle of silk fiber, poke a hole in the middle, and gradually stretch the fiber into a roving that is the thickness you want. You can spin the roving, or you can directly knit it. For more on the process, here is a website that explains it well: About Silk Caps.

Here is the finished scarf not on me:

And here is a picture of the beginning of the project, showing all of the layers of silk I peeled apart from the silk cap.

It was a quick, fun project, and I enjoyed using up most of the silk cap that had been waiting in stash for a few years. I did something new to me, and completed a project I’ve planned to make ever since I got the silk cap. And it feels great on my neck, very soft and not too warm.

Onward, in peace and delight. And a comfortably warm neck.

Sunday, May 31, 2015

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 created in October 1928. I keep looking at the change in the water, from bottom to top. Bottom and top are negative images of each other, integrated seamlessly into a whole.

This print also is a fine example of his virtuosic technique, which dazzled me over and over and over again. His woodblocks especially were exquisite. There was one original block on display, with a hole drilled into it so that it could never be printed again. It was an objet d’arte as lovely and as amazing as any print hanging on the walls.

In addition to being a monster at creating an intricate woodblock, Escher was adept at physically pulling the prints from their original media. He did not routinely use the expert print shops that have long been available to take care of the technical task of moving the image from medium to paper for the artist. Many of his pieces had the word “eigendruck” written on them in pencil in the margin - his proud notation that he was the craftsperson who physically made the print.

Escher’s fascination with geometry, space, and perspective started early. This piece, Covered Alley in Atrani, Coast of Amalfi, created in November 1931, fascinated me. Oh, there are the stairs. And that rich, rich black. It was that black in reality, too. Seeing this one piece was worth the price of admission to me.

Woodblock printing is not a logical technique to use to depict night scenes. Therefore in 1934 Escher made a series of prints of  nocturnal Rome. This one is titled Nocturnal Rome: Trajan’s Column. It was very hard to pick just one for this blog post. Each of them is a study of light and shadow.

Escher was a master of lithography as well as of the woodblock print. This picture, Still-life with Mirror, was created in 1934, and it is messing with our heads, as he so loved to do. Could you really see that street scene in that mirror?

There were tessellations galore. This is a famous woodblock print, Circle Limit IV (Heaven and Hell), created in July 1960.

There were also many examples of his fantastic geometries, Escher’s famous buildings that could never be built. A lovely example is the lithographWaterfall, created in October 1961. I see echoes of his Italian landscapes, and I love the garden at the bottom.

The final print I saw was this woodblock print, Three Spheres I, created in September 1945. I almost could not tear myself away from it. The vision and the technical perfection overwhelmed me. Not a single irregularity or misplaced stroke of the knife any where. I have seen human-created perfection on this earth, close enough to touch it (though I didn't).

I am so very grateful to my friend Judy for taking me to Ottawa to see this show, and for sharing good food and conversation with me. Judy and I have had a couple of marvelous adventures together where we have spent the day immersed in our love of the beautiful, including gravity balanced stone sculptures in the Rideau River, amazing minerals from the earth, and works of art.

I am also grateful to the National Gallery of Art in Ottawa for making the images of their collection available online. All of these images and much more can be found at http://www.gallery.ca/en/see/collections/artist_work.php?page=1&iartistid=1655&withimages=N.

Wednesday, May 20, 2015

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 and who are remembered only by family and friends after they die. I’m luckier than most to live where and when I do.”

My favorite short biography is the one I wrote during the “Write your life in six words” meme that swept through the Internet several years ago. “Right place, right time, sheer luck”. These words have a very deep meaning to me. “Right place”: I live in a peaceful, affluent part of the world with clean air and abundant clean water. “Right time”: I’m living in a place and an era of history where I have an incredibly comfortable life due to inexpensive, abundant energy supplies available on demand - and I don’t even have to be wealthy to enjoy such comfort. “Sheer luck”: I did not have any control over where and when I was born.

Adding to “Right time”: medical science is now learning more about the type of cancer I have, so there are improved treatments available to me that have not been available in the fairly recent past.

When it comes to the cancer itself, I’ve used the words “good luck” and “bad luck” quite a bit over the past year. It was a shocking bit of bad luck to be diagnosed with stage IV lung cancer. I don’t care how much mindfulness theory of “the beauty of accepting things just the way they are” you or I or anyone else wants to throw at the situation, I’m still going to have a hard time not judging the event as a negative one in my life. It has been followed, however, with a series of events where it’s hard not to judge them as good luck:

  • I tested positive for the EGFR mutation, which occurs in 10-35% of people with my type of lung cancer. There are targeted treatments for people with this mutation that may extend life.
  • I was old enough and had enough years of active service in a retirement system to be able to retire shortly after getting the news. Not everyone with a similar diagnosis is that lucky.
  • After developing resistance to my first line of targeted treatment, I tested positive for the T790M mutation, which happens in 50% of the people who develop resistance. This opens up a clinical trial for me for my second line of treatment - a shiny new drug called CO-1686 that has good results so far.
  • I found out about the trial and signed the informed consent paperwork just a few weeks before the drug company closed the trial. They are getting ready to go for FDA approval. “Right time” works out again.
So 50% of maybe 20% - that puts me in a pretty small group of people for whom continued targeted treatment is even possible. To boggle my brain further, the promising new drug has only been taken by maybe 150 people so far. I’m in a select club that could fit comfortably in an average high school auditorium. That is a bizarre kind of “good luck” that is exciting, shocking, and a wee bit daunting all at once.

Given the complexity of the situation I’m in, I can no longer decide whether I’m having bad luck or good luck. I think that means it’s time to put those labels aside.