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

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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Friday, February 6, 2015

Structure

I think that I have spent my entire life resisting the particular structure known as a schedule. Ask my homeroom teachers about how often I was late to school. Ask all of my bosses about whether I struggled to get to work on time. Ask my poor, hungry husband about my ability to put supper on the table at a consistent and reasonable hour. Ask my daughter about my ability to get her to college on time the year that we commuted together.



(My daughter has chosen to rebel against her upbringing by becoming a time-conscious, prompt, and on-schedule person. Good choice!)



Knowing this, you can predict what an amorphous shape my days have taken since retirement. I have a list of daily goals and I do a pretty good job of meeting them, but when things will happen is not defined, and each day becomes increasingly busy with activity as I run out of waking hours to accomplish my goals.



The one constant defining point of my day’s structure is taking my Tarceva, which I do first thing in the morning. After that, I have to wait one hour to eat or drink, so engagement really starts after breakfast. The question every morning is, however, how much time slips away in the company of my good buddy the Internet before breakfast actually happens. Often that one hour wait for complete absorption of the medicine stretches to two hours.



I now have to fit another drug into my schedule; due to side effects from the Tarceva, I’m taking doxycycline twice per day for 6 weeks. This is a drug that demands careful, consistent scheduling. You have to take it one hour before or two hours after a meal for full absorption. I haven’t asked my doctor yet if I can take it at the same time as the Tarceva, but my gut feeling about that is to let the Tarceva have my body all to itself at dosing time. After getting the bottle of doxy and reading the dosing guidelines, my head was spinning around how I can organize my life to take this medication properly.



My conclusion is that I am going to have to structure my life around a more consistent timetable. This means less dawdling after taking the Tarceva, and supper on the table at an earlier hour. I’ll have to focus my dairy on breakfast and supper, and have little or no dairy at lunch. Thank goodness I am a big fan of the peanut butter sandwich.



I’m amused that medicine has taken over the role that having a job used to have in giving my day a structure. I have my doubts as to whether I will be any more successful in cheerfully and consistently adopting this new structure than any other schedule I’ve had in my life. If I can - well, good for me, on more than one level.

Tuesday, December 30, 2014

2014: Summary of a Year of Knitting

Through the twists and turns of a life-changing year, I kept on knitting. One project knit during the turmoil of spring and summer did not get recorded in pictures or on Ravelry, but I have a stand-in at the ready to represent it.



A toque for Ana. The pattern is by Anna Zilboorg from her book 45 Fine and Fanciful Hats to Knit, a favorite of mine.



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Very pretty, but someone stole this out of Ana’s mailbox in Montreal and she never got to wear it. That’s OK - to tell the truth, the yarn was kind of scratchy and this was probably not going to be a successful hat in the wearing.



So, onward to a replacement toque:



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Better colors to match her winter jacket, and much more satisfactory yarn. There is quite a bit of cashmere in that white yarn - mmmmm, soft.



Two pairs of fingerless gloves. The pair on the left was for Ana, the pair on the right was for me. The pattern: Hexagon Mitts by Sybil R.



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This is a fun project that starts with the thumb, grows outward, and then down. The orange yarn in my pair is some of my early handspun.



Sometime during the spring I cast on a pair of socks for my mother, from my only published pattern, Dragonskin Socks. Blue is my mom’s favorite color, and I used Spinning Bunny Hand Dyed Panda Yarn, a lovely variegated yarn that is a blend of merino and bamboo, in shades of blue . The socks fit her well, and she tells me she is enjoying them this winter. I finished them in late July. Standing in for my mom’s pair is a pair I made for my husband Robert in 2013.



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Next up: My masterpiece. It was a year and a half in the making.



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Beautiful pattern (Lorelei by Tonia Barry), luscious yarn, and perfect fit. This is the best sweater I have ever knit for myself.



I don’t knit a lot of sweaters in recent years, but I rushed forward and finished a second sweater for myself, in less than 5 months time!



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I love this picture of me with the statue of Rachel Carson in Woods Hole, MA. This is a tweaked version of Marnie MacLean’s Damariscotta. The yarn is 50% wool, 50% bamboo, so it’s very breathable. I plan to submit it to a local exhibit of knitting projects completed during 2014.



Last completed during the year: a sturdy, colorful pair of mittens.



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The main yarn is handspun, hand dyed Cotswold from Diamond Ledge in Vermont. We are not supposed to call yarn “scratchy” any more - the new term is “crunchy”. The yarn was too crunchy to use for a scarf, but mittens are a perfect use for a yarn that is going to be very strong and warm. I used a pattern called Toe Up Mittens by Lynn Hershberger and found a complementary lopi yarn in my stash so that I could have nice, long cuffs after I ran out of the cotswold.



I begin the new year with three projects on the needles: a pair of socks, a lace shawl, and a vest. The last two are leaps of faith, that my current state of well being will be with me long enough to both finish and enjoy wearing more major pieces of knitwear. I end with this quote:



 “Knit on, with confidence and hope, through all crises.” — Elizabeth Zimmerman

Sunday, November 30, 2014

November Wrap-up: Obligatory Gratitude Edition

It seems like a blog post on gratitude would be standard fare from any cancer patient who finds herself doing well in late November. I am doing well, and I am indeed grateful!



My 3-month scan after starting treatment with Tarceva shows significantly diminished cancer in my lungs. There are some pesky swollen lymph nodes in my armpits, and I had a PET scan last week to take a look at them. My oncologist will discuss results with me this week. I’m feeling confident that whatever they are doing, we can deal with them due to one simple fact:



I feel great. Yes, there are pesky side-effects, but the big deal is that I feel healthy and vigorous and I am gaining in strength.



I’m grateful for good tools, all of which are helpful now or in the future to maintain my health. The ones most important to me right now:



- Mindfulness meditation classes with my friend Charlie Bradt, and support from his website “What do you really want?”. I started going to Charlie’s weekly sessions before my diagnosis, and I credit what I am learning from him, the resources he shares, and my own practice with helping me weather the storm of the diagnosis as well as I did. Meditation helps me be positive, hopeful, joyful, and loving every day.



- The online game HabitRPG. My daughter turned me on to this fun and helpful role-playing game, where you list the habits you want to develop and the tasks you want to accomplish, and check them off as you accomplish them. It’s surprisingly fun and reinforcing to collect pets and equip my avatar, and I also work hard to do all of the daily things I want to do (meditate, drink water, exercise, write in my journal) to avoid losing health. I firmly believe that establishing consistent healthy patterns of behavior is one of the most proactive things I can do to maintain my wellbeing.



- The number of good drugs for my particular cancer variant that are rapidly becoming available. There are new drugs being developed that work on EGFR mutations after a cancer becomes resistant to first line drugs such as Tarceva, and people are having excellent results from those drugs.



- Retirement. What a wonderful gift to give myself! I am truly fortunate that I was ABLE to retire. Robert and I are not rolling in money, but we will continue to be comfortable.



- Good health insurance. Again, I am fortunate. So far nothing has been denied me, and everything is covered.



- On-line communities of cancer patients. I am using two in particular for information (SmartPatients.com and Inspire.com), and find them to be very helpful for finding out about treatment trials, what other people like me have learned, and how other people are doing with various treatments, new and old. These sites are, with few exceptions, positive, hopeful, troll-free places.



- Unconditional love from family and friends.



I am feeling so well, I have just volunteered to train as an AARP tax aide for the upcoming tax season. It’s a big step for me to make an outside commitment, and I’m looking forward to helping others this winter.