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

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.



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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.




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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


http://link.springer.com/article/10.1245%2Fs10434-010-1487-0



- 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.













Saturday, May 2, 2015

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 where the dye lot issue could be avoided: a vest with a texture patterned neckband. I had enough yarn in the main dye lot to knit the body of the vest, and I could use a different skein to knit the neckband - due to the texture, no one would notice a slight color difference, not even me.



The pattern is “Sebasco” by Amy Herzog. Ms. Herzog is the doyenne of sweater knitting, and teaches knitters how to knit a sweater that fits well. I did have to make one adjustment in the pattern. My yarn would not make gauge, it was a wee bit finer than the yarn used to design the sweater. I knit the vest one size up in a gauge that worked for the yarn, using the height measurements for the size I wanted. It worked.



This is the first sweater I have knit for myself that I cast on post diagnosis. Photos taken in Ottawa by my friend Judy Andrus Toporcer.




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I was left with about 2.5 skeins of yarn in multiple dye lots after the vest was done. Rather than put it back in stash to molder, poorly identified and difficult to use, I decided to find a pattern that could use it all up. My choice: the fabulously popular Honey Cowl by Antonia Shankland. Ravelry lists over 19,000 projects made with this pattern to date. It was a simple pattern, easy to memorize and crank out. I knit the cowl in only 5 days, pretty much a speed record for me. As I hoped, the texture of the Honey Cowl complements the texture of the Sebasco Vest beautifully. These photos were taken in back of our home by my husband.




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I have all of maybe 3 feet of yarn left. Mission accomplished!

Thursday, April 30, 2015

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 smartpatients.com 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 correct. First, our daughter asked if she could be married in our home, and she chose the day before the sermon as the date. When I asked her if she was certain she wanted that date, she said it was good timing - it meant she would certainly be able to attend the sermon. You could have knocked me over with a feather when she told me that!

Then, I picked up the CD of my latest CT scan. I wasn’t going to be seeing my oncologist for several days, but I gathered my courage and read the lab report. It was sobering reading. The primary tumor in my upper left lung, that had nearly disappeared 3 months prior due to targeted therapy, was back.

Writing about my mortality and how I was moderating my hopes for my future with the reality of my diagnosis with so much change pending in my life was challenging. I fact-checked and honed my words and stared my situation in the eye for a few concentrated days as I pressed to finish the sermon before the week that would include an appointment with my oncologist and end with our daughter’s wedding. When Jon M. asked me to chose a graphic for the cover of the Order of Service, I found one that was perfect given everything that was going on in my life: “Keep Calm, It’s the Circle of Life”.

As expected, the oncologist said my scan was “not stellar”. She was not willing to say that I’m progressing, but it is clear that I will not be one of the fortunate few who use Tarceva for many, many months with success. Managing cancer as a chronic illness is a complicated business for all of us who attempt it. Decision points are harder to identify than I thought they might be, and both the information we have and our choices are limited and imperfect.

The first Sunday of March found me in front of the congregation in my best hand-knit sweater. With me were Jon M. and a dear friend and musician John D., who had agreed to provide special music for the service. When it came time for me to give the sermon, I found myself more emotionally stirred than I had expected. There in front of me were my husband, my daughter and her new husband, his parents and brothers, my step-son and his girlfriend, some special friends, and my three grandchildren. My voice was shaky as I spoke about how the hardest part of my terminal diagnosis is the sadness my friends and family feel because of my illness, and how helpless I am to take that sadness away. Even as I spoke the words, I was telling myself “this is the worst of it, from here on out it will be easier.” It was easier, but I was so emotionally drained by the end that I didn’t know what I was supposed to do, and Jon M. gently told me I could sit down.

Music is very important to me. I studied it as a young person, and I still think it is the art with most direct access to our deepest feelings. John D. and I chose the music together, beginning with “What a Wonderful World”. He played Iris Dement’s “Let the Mystery Be” for the offertory, a song that has been deeply meaningful to me for many years. After my sermon, he played a song by david m. bailey called “If I Had Another”. I didn’t tell the congregation this, but david was a man who lived with brain cancer for 14 years. He left his corporate job upon diagnosis to devote the rest of his life to singing about his faith and the beauties of being alive. In the song, he wonders what he would do if he knew he only had a short period to live - a week, a day, an hour, a minute - and ends by asking us what we will do with the lives we have ahead of us. It is a perfect summary of the meat of my message: that all of us have the same prognosis in the end, and that life is best lived in the present moment. Two members of smartpatients.com allowed me to use their words in my closing. Sarah Kugler Powers asked, “When do we allow ourselves to try to live again, not just survive, but truly live a fulfilling rich life in the aftermath of all we experienced?” John, a survivor of esophageal cancer, answered, “When do we allow ourselves to live again? Today. Then do it again the next day.”

The feedback from the sermon has been very positive. Many people have asked me to email it to them, and more than 340 people have listened to it via the recording posted online at soundcloud.com. It is probably one of the best things I have done in my life, and it came out at the perfect time. There has been much in the news of late about cancer and about facing mortality: The PBS series based on Siddhartha Mukherjee’s The Emperor of All Maladies, the Frontline show on Atul Gawande’s Being Mortal, the op-ed piece in the NY Times by Oliver Sacks on his terminal diagnosis. I feel like I’m not alone in realizing that my lifespan is limited, and that I am joined by many who are paying attention to the end of life.

I didn’t fully realize when Jon M. asked me to write a sermon that he was offering me a gift.

Winter has come slowly to a close here in northern New York and I continue to live with realistic hope even as this danged disease is changing things up. My oncologist considers me to be showing progression, and a new PET scan has disclosed the first metastasis to my spine. I’m continuing my targeted therapy for a bit longer, and I have traveled to Roswell Park Cancer Institute to enroll in a rociletinib phase I/II trial, pending biopsy results. Next month, one way or another, there will be a change in my treatment. In the meantime, I still feel pretty darn good, able to bring in firewood and walk our spirited labradoodle. And I will see the crabapple tree that was planted for me last year bloom this spring, and I will pass my first cancerversary with style. I am also very aware of how uncertain the future is beyond that blooming tree and that anniversary marker. The uncertainty, however, cannot diminish the joy I feel from the fact that I am alive right now on this wonderful world.

To hear david m. bailey’s song “If I Had Another”, please visit
https://www.youtube.com/watch?v=2p3dTF1_WD8.


To hear me deliver my sermon “Realistic Hope: Living with a Terminal Diagnosis”, please visit
https://soundcloud.com/uu-church-canton-ny/2015-03-01-sermon.



Saturday, April 25, 2015

Our Living Arrow Flies Forth

So much has happened since I last published a blog entry, it’s difficult to start writing again- where do I start? I have been writing, but in other venues. I wrote a sermon, and I wrote a piece for a patient support web site. More on that in subsequent posts. Right now, I want to write about our daughter Ana.


When I think of her, I think of what Kahlil Gibran wrote about children in The Prophet:

Your children are not your children. 
They are the sons and daughters of Life's longing for itself. 
They come through you but not from you, 
And though they are with you, yet they belong not to you. 
You may give them your love but not your thoughts. 
For they have their own thoughts. 
You may house their bodies but not their souls, 
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams. 
You may strive to be like them, but seek not to make them like you. 
For life goes not backward nor tarries with yesterday. 
You are the bows from which your children as living arrows are sent forth. 
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far. 
Let your bending in the archer's hand be for gladness; 
For even as he loves the arrow that flies, so He loves also the bow that is stable. 

Source: http://www-personal.umich.edu/~jrcole/gibran/prophet/prophet.htm#Children


It’s been quite a while since our daughter passed the boundary between youth and adult. She makes her own decisions, she manages her own money, and she does her own tax returns. This past February, she confirmed her fully adult status through three major accomplishments: she got a wonderful job offer, defended her PhD thesis with great success, and married the man she has loved for more than a decade.

She is coming back to the States, and has a postdoctoral fellowship at the National Cancer Institute. Immediately after a busy job search that included air travel, she defended her thesis. Ana hit it out of the park, and has since won the award for the best mathematical thesis to be presented this year at McGill.

Almost immediately after that, Ana was married in our home. She and Michael met when they were both 15 years old, and there has never been anyone else for either of them. They have grown up together, and they have stayed together through all their changes. We both love Michael, and made him part of our family years ago.

It was a perfect, very small wedding consisting of twelve people in all: the bride and groom, parents and siblings, and two of their friends who were their witnesses. I baked blueberry and pumpkin pies instead of making a cake, and we toasted the newlyweds with Quebec hard cider. Afterwards, we all went out to dinner to an excellent restaurant, and ordered off of the menu. There were echoes of my own small, homemade wedding 33 years ago: the bride made her own dress, and they were married in nearly the same spot where Robert and I were married. Then it was a small deck on a wooded hillside, now it is our living room.

Even as I type these words, Ana and a friend are driving a U-Haul truck to her new home. Alas, Michael is still in Montreal. They have applied for a spousal visa for him to be able to live and work in the US, but he does not yet have the piece of paper, so they will have to live apart for a while.

We have done our best to be good parents, and I do believe that the arrow we sent forth is flying swift and far.

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