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

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.

Thursday, October 30, 2014

Another Birthday

Today I am 63 years old, and I look back over a year that took me by surprise. None of us knows what lies ahead, and the Universe decided to use a sledgehammer to remind me of that truth over the past 12 months.


A year ago I was:


- a workaholic, juggling many different sets of responsibilities at my job.

- a person who got little exercise and who weighed more than I liked.

- glued to a computer screen for almost my entire day.

- feeling isolated much of the time.

- dabbling in mindfulness meditation, but without a practice.

- surprisingly healthy and prone to occasional feelings of well being, given all of the above.


Today I am:


- retired, and loving it. I feel no guilt at all about not showing up to work any more!

- a person with stage IV cancer.

- a person who is significantly more active. I go for a walk every day, and in general try to stay on my feet.

- still a lover of the computer and the smart phone, but not as tied to them.

- overwhelmed by the love of so many people.

- a person with a mindfulness meditation practice - although every practice can be strengthened.

- surprisingly healthy and prone to more frequent feelings of peace and well being, given all of the above.


Whatever happens in the next year, I will be fine.


And now I’m heading out the door to join my family for the wedding of my nephew, which is a celebration of Life - all our lives and all of our stories, including my own.

Thursday, October 9, 2014

Where There's Hope, There's a New Sweater

One of the issues I grappled with early after diagnosis was: what the heck do I knit now? Sweaters and lace shawls are wonderful to make and wear, but they take a while to complete. An added consideration is how much wear they will get now that I’m retired. I could certainly wear that gorgeous lace-bottomed cardigan around the house, but will I? Does this mean that I had best restrict myself to small projects and gifts for other people to wear?



Gifts are another issue all by themselves. It’s surprisingly difficult to knit a gift that the recipient likes, or uses. Socks are the best bet, but even they are problematic.



I have resolved this issue by deciding to knit what I feel like knitting. This means that I now have a new sweater. I finished it in time to wear on a recent trip to Cape Cod (although not in time to wear to my retirement dinner).



Here I am in Wood’s Hole, Massachusetts, by a memorial to Rachel Carson. Wood’s Hole is a fascinating spot, as scientific work provides a lot of jobs in the area though NOAA and the Marine Biological Laboratory. I found out that Rachel Carson worked for NOAA. She is an important person in my life, because her book Silent Spring was my introduction to ecology.



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Other views of the sweater:



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The pattern is Damariscotta, designed by Marnie MacLean and available at the Twist Collective. I knit it in a Canadian yarn, Specialty Designer Yarns 50% Bamboo 50% Merino. It’s soft and cushy, warm and breathable. The sweater has shaping, is knit from the top down in the round, and was designed to have cap sleeves. When I got the body done, I had a lot of yarn left, enough to make 3/4 length sleeves. They seem more appropriate to the weight of the yarn and the tone of my arms than the original sleeve would have been.



The pictures above are a good demonstration of how hard it is to photograph yarn colors accurately. Three photographs, three shades of purple. The actual sweater is very close to Radiant Orchid, Pantone’s Color of the Year for 2014.



As for hope, blood tests indicate that the targeted chemotherapy I’m taking is working, and I am feeling remarkably well. I have cast on a lace shawl to celebrate.

Tuesday, September 16, 2014

I am not a rock. I am not an island.


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After a busy couple of months, I have retired, and I am under treatment.



The treatment is a pill taken first thing in the morning. The medicine is very expensive, to all of us in the aggregate although not to me as an individual. Thank goodness for good health insurance. I do have a genetic mutation in the cancer and am able to take targeted treatment. I’m dealing with some side effects, but they aren’t as uncomfortable as full-bore chemo.



I’ve been taking care of business. New wills and powers of attorney are executed, my passwords are in a sealed envelope in the lawyer’s safe, beneficiaries are updated, and expenses have been dialed back. I finished my job as neatly and completely as possible, and left matters in good shape for my successor. All of this is liberating. As each task gets done, there is more time to simply enjoy living.



I am an oldest child, and I’ve spent much of my life being a responsible person. Now I am pulling back from that role. At the moment, I have very few responsibilities and I am loathe to add any beyond care of friends and family, and paying the bills on time.



I’ve been the rock, the person you can count on. Not any more. It’s time for a new role, and a life lived more lightly.



At the same time, I have never felt less isolated in my life. The abundance of love I have been shown by family and friends is overwhelming. I never realized before how many people care. All I can do in return is love back. There is a lot of peace in loving.



I have a new way of living to explore, and I am surprisingly happy to be in this place.



Thursday, July 24, 2014

Knitting Blog: A Most Successful Sweater

Knitting a sweater to completion becomes more daunting as the years go by. The reason: My standards for success keep becoming more refined. There are so very many ways to screw up a sweater, all of which may result in an unflattering, poorly fitting, or uncomfortable item of clothing on which you have spent a long time, and probably a substantial amount of money. Yarn does not come cheap. I think many knitters have thought, while wandering through racks of sweaters in a clothing store, “I could knit that for twice the price!”



I started this project with one strike against it: I could not make gauge in my trial swatches. The yarn I wanted to use was Reynolds Coco, a discontinued yarn purchased at a bargain price years ago from a yarn store that has been long closed. The yarn was just a wee bit finer than the yarn used to create the original sample for the pattern, so the fabric that felt and looked right had slightly more stitches and rows per 4 inches than the specified gauge. I did some figuring, and decided to cast on a size larger than I would have knit if the yarn could match the pattern gauge. The yarn was worth the attempt - a luscious blend of wool and rayon with lovely sheen and drape and a rich, glowing emerald color.



The pattern: “Lorelei”, designed by Tonia Barry and published by the Twist Collective. I cast on my first stitches on November 17, 2012. Emerald was Pantone’s Color of the Year for 2013, and I was excited by the idea of finishing a sweater in 2013 in that year’s color. I then proceeded to be diverted by a number of smaller , less risky projects. As 2013 drew to a close, I realized that I needed to actually spend time knitting this sweater if I ever wanted to actually wear it. I finally finished it on April 14, 2014, just as it became too warm to wear wool sweaters. Oh well, I am ready to face this coming winter in style.



This might be the nicest sweater I have ever knit for myself.



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A detail of the lace pattern at the bottom of a sleeve:




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I read the pattern carefully when I started the sweater, and I realized that I couldn’t knit it as-is and be completely happy with the end result. I wanted a cast-on edge that would blend into the lace texture. The pattern needed one extra stitch (a selvedge stitch) at the sides, where the sweater would be sewn together. It also needed a better buttonhole. Here are my notes on my project page on Ravelry:




  • Use of a selvedge stitch is highly recommended! I don’t understand why one wasn’t designed in to make the lace match perfectly when the sweater is sewn up.

  • If you use a selvedge stitch, you will need to reverse the moss rib pattern on the sleeve bottom for the rib to flow into the lace pattern.

  • I used Techknitter’s Tulips buttonhole. A sweater like this deserves the best buttonhole you can give it.

  • I used the Rib Cable Cast-on described at http://www.keep-on-knitting.com/rib-cable-cast-on.html. It produced a beautiful edge to the sweater that works perfectly with the moss rib specified for the first few rows.

  • I’m happy with the result of my gauge substitution on my body. Warning to another knitter considering a similar gauge substitution: you may find the fit at the armscye to be too tight. This sweater fits me more like a blouse than a cardigan in the underarm.






Tuesday, July 15, 2014

My World Turned Upside Down

A month ago, my life changed forever at an 8:45 AM doctor visit.


I had been “doctoring” for several weeks, trying to solve persistent constipation that was accompanied by a slight difficulty in breathing. After a variety of interventions had failed to solve the problem, my doctor ordered a CT scan of my abdomen and a blood test that flags lung problems. When the blood test results came back with very high markers, I received an urgent call from my doctor’s office, telling me to go back to the hospital stat for a CT scan of my chest. This scan confirmed that I had a large pleural effusion, or build-up of liquid in the pleural cavity of my left lung. A lung specialist drained my lung in the emergency room and sent a sample off for analysis. There were cancer cells in that fluid.


So what do you do when you learn on a Monday morning that you have lung cancer?


You say ungraceful things. You cry. You discuss the best options for care with your doctor, and follow his recommendations. And in my case, you go to work, where at least there was something I could do. I don’t think my husband and I could have done each other much good had I gone home, our feelings were too raw.


It’s been a busy month, filled with appointments with new doctors, financial planning, and communication with friends and family. My heart has grown at least a size from the love I am receiving from every direction.


I am still working, but I will retire at the end of August. My job is too demanding to balance with treatment and rest.


I am getting consistent messages from the medical specialists who are helping me that this cancer probably isn’t curable with the treatments they can offer, but that I am healthy and that they think the cancer can be managed as a chronic illness. The first step is to get a sample of the cancer for genetic analysis. I am going to Strong Memorial Hospital in Rochester on Friday to do just that. The surgeon will also seal the pleural cavity of my left lung, so that I don’t have to have it drained regularly. I have had a surge of courage these past few days, and I can do this.


I want to write more frequently here. I keep making notes of thoughts I notice and want to puzzle through as I talk out loud with my keyboard in this personal space. It’s hard to find time right now - I began this blog post days ago, and had intended to write in much more detail. I like this shorter version. Soon I’ll be living at a slower pace, and will have more time to write.


I don’t intend for this to become a cancer blog, however. I’m still knitting, and I’m still living a life that is bigger than the cancer within me.


Sunday, March 9, 2014

Mourning

I’ve endured the weather of this cold, icy, snowy winter with few complaints, other than joining in the general conversation. The wood stove, 2nd floor office (where I benefit from the rising of heated air), electric blanket, down coat, and bounteous collection of warm knitted clothing have kept me warm.


What has been more difficult has been enduring loss, and grief.


First we lost Patches, our 17 year old calico cat. She developed a severe urinary tract infection in December. We treated her, but the infection returned in January. A bunch of tests didn’t turn up an underlying condition, so she had a second round of treatment. This cat hated being doctored, but somehow we managed to administer three weeks of medication, and she seemed to rally for a few days. Right about the time we were to take her back for a checkup, she began to fail. In early February we took Patches to the vet for the last time.


Almost immediately after Patches’ death, our cat Mewah’s long, slow decline accelerated. She was more than 20 years old and was already thin. Suddenly she began to look gaunt, to smell faintly of urine even after a bath, and to lose her interest in food. Some research on the Internet led us to conclude that her kidneys were failing. We did our best to find food she would eat but nothing worked past a few days. Meanwhile, she was on the move constantly, and we realized that she was uncomfortable. On her last day, however, she spent quiet time in each of her favorite spots in the house: sleeping in a sunbeam on the futon in the guest room, curled up by the pillow on our daughter’s bed, on her favorite down-filled comforter in the living room, and on the warm sandstone that tops our wood stove enclosure. That night, she climbed up the steps to our room and meowed by the bed. She slept between our pillows for a few hours, until it was time to wake up. When we brought her downstairs, she was no longer able to drink water, and we knew it was time to release her indomitable spirit from her aged body.


Her death was calm, peaceful, and painless. It happened almost exactly two weeks from when we said goodbye to Patches.


I’ve cried so much for this cat, as she failed, and after her death. She was a special part of our daughter’s childhood, her beloved companion. Saying farewell to her ended a chapter in our lives. Ana wasn’t able to be here to be with Mewah at the end, so we had the vet take clay paw prints for her. As for us, we have a drawing on a shelf fungus that Ana made many years ago, serving as a tangible reminder of a little girl and a little cat.


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And then, a week ago we learned that our dear friend Vivian had died in her sleep.


Vivian served on the town board with Robert during a troubled time in our town, and we became friends. You learn a lot about a person in adversity. I learned that she was a person with a huge heart and the capacity, as her son said, to take a lemon and make five gallons of lemonade. Her daughter-in-law talked about staying at Vivian’s house for several days during the 1998 ice storm, and said she had never laughed so much in her life.


We were far from her only close friends. At the evening calling hours, we waited for an hour and a half to talk with her family, and the afternoon calling hours had been as crowded. It was standing room only the next day at her funeral. Vivian was not rich in worldly goods, but she may have been the richest person I’ve ever known in people who loved her.


We would all have loved her to stay with us longer, but no one can deny that she left us in the best way possible. On Saturday night, she was at a large, happy party with her extended family, hugging, kissing and laughing with friends and family. Then she went home and went to bed, and died peacefully in her sleep.


Several days ago, as I drove to work, I said out loud, “I am in mourning,” and experienced a shock of realization. It has been a long time since I’ve mourned, and it’s a state that few of us are prepared to weather gracefully. I don’t think that mourning is a selfish state. As I explore what it means, however, it seems to be more about what I have lost than what those three loved ones lost when they died. This is food for my meditations, as I touch the edge of the mysteries of the finiteness of life and the nature of suffering. I can feel some joy and gratitude through my tears, that we share our lives and care with other creatures, and that I was fortunate enough to know Vivian.


I end with an image of Mewah and Patches sharing Robert’s lap.


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