Tuesday, September 1, 2015

Inch Eight: Oliver Sacks

Oliver Sacks, 1933-2015


Dr. Oliver Sacks, the renowned neurologist and author, died last Sunday. He had announced his terminal cancer diagnosis several months earlier in an evocative essay published in The New York Times.

Over the last 30 years, I have read some of his books, including The Man Who Mistook His Wife For A Hat and Musicophilia, and many of his essays. Besides being a doctor, Sacks was a fluid writer. On the act of writing, he wrote: "The act of writing, when it goes well, gives me a pleasure, a joy, unlike any other. It takes me to another place — regardless of my subject — where I am totally absorbed and oblivious to distracting thoughts, worries, preoccupations, or indeed the passage of time."

Sacks was raised an Orthodox Jew. As a gay man in a religion, culture, and age that did not see homosexuality as anything but an abomination, he withdrew from his religion. In his last essay, published The New York Times just two weeks before his death, Sacks spoke of his severance and the unanswered "what ifs?" had there been a different reception back in his youth, an acceptance he now found in his late years.

In that same essay, he reflected on the Sabbath as a day of rest and as an apt guide for the closing of his life. Sacks wrote:

And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.

When I saw the headline on Sunday that Sacks had died, my first response was to burst into tears. When I calmed down, I reflected on a life well lived, right to the very end in his showing us how to die.

I am grateful he found his Sabbath.

Friday, August 28, 2015

Inch Seventy-Nine: Learning to Conserve

Conserve.

My battered red Webster's New Collegiate Dictionary tell me the word means to "keep in a safe and sound state, [especially] to avoid wasteful or destructive use."

I am learning to conserve.

Let me make clear what I am conserving. Not money, not land, not my tangible household goods. I'm good in that regard. I consider myself fairly thrifty and frugal, and I reflect regularly on ways to reduce my eco-footprint. I recycle and reuse. I limit my spending and vigorously eschew conspicuous consumption. While I am not at the same level of routine subsistence living as my son Sam and other millennials, I easily surpass most of my coworkers, all of my siblings, and many of my friends. Long before the Non-Consumer Advocate adopted it, I had already made this World War II slogan my own: Use it up, wear it out, make it do or do without.

So what am I conserving if not the treasures of this world?

I am learning to conserve me.

I have moved into a new phase of cancer: chemotherapy. My new regimen is two consecutive days (Tuesday/Wednesday) for three consecutive weeks, rest one week, then resume. Because I have am incurable, unsolvable, and terminal cancer, chemo is not for so many weeks or courses. It is an infinite loop until it or I fail.

It is such a wearying prospect.

I have just finished the second week of the first round. It could be a lot worse. Way worse. So far I am not experiencing acute nausea. I am unlikely to lose my hair. It does not take all day, only about three and a half hours with driving. On the first day, I went to our monthly legal clinic afterwards. I have gone to work afterwards three of the four chemo days. So I am well aware and grateful that I am tolerating chemo so seemingly well.

All the same, I am becoming increasingly aware that the chemo is charging a heavy tariff.  And in that regard, I am the wastrel, the profligate intent on squandering her assets while the tax collector waits in the hallway, shifting stolidly from one foot to the other.

Our home life often moves at a fast pace and as of late it has moved at a frantic pace. Most of the most frenetic activity is in Warren's spheres, which invariably spill over into mine, but some of it is of my own doing.

I need to learn to step away. I need to learn to turn off the engine. I need to learn to conserve.

I took a baby step a month ago, resigning my seat on our town's civil service commission. I have served on the commission since 2006 and that was a hard letter to sign. Afterwards, I cried, especially after the note from the fire chief arrived in my email.

I am taking bigger steps right now, wrapping up a yearlong court project with my old court. The project was community building in the truest sense and I am proud of my work. But as I draw up my project punch list, I find myself handing over the reins (and the paperwork and the responsibility) to the new court coordinator with a palpable sense of relief rather than reluctance. It is time to let it go.

I am learning to conserve myself.

The most daunting frontier of conservancy is personal. I can not, I will not winnow my friends. But I have to start limiting my engagements. And that is hard, hard, hard. No, I can't meet you for lunch; no, I can't do coffee that day or even that week.

It is hard and I resent it. But then I come back to the definition of "conserve" and the reality of my life now. To be able to work, I must conserve myself. To be able to write, I must conserve myself. To be able to be Warren's companion and helpmeet, I must conserve myself. Already others have called me on the carpet. My friend Kevin wrote "Especially while you are in treatment, if the choice is between baking and taking a break, you should take a break!" Kim echoed him in her email: "Lastly, I know you are the mentor and I am the mentee but I do have to say April take care of yourself. I only say this because it seems that you're spreading yourself really really thin even for person who had 100 percent health. " And my wonderful friend and coworker Dodie looks at me and says, bluntly, "April, just go home!"

So I must learn to conserve. My friendships will carry on, even if the emphasis shifts to emails and shorter contacts. One dear to my heart, discussing my health, wrote "God has blessed you both with many friends.  Hold tightly to them." I hold those words tightly and gratefully.

I find myself thinking a lot of Anne Morrow Lindbergh and E.B. White, the two writers I return to time and time again. Anne was famous for the sheer volume of friends and acquaintances she had. Her correspondences, tea and luncheon engagements, and evening events (plays, dinners, concerts, movies) were staggering. She wrote in her lyrical Gift From The Sea:

There is so little empty space. The space is scribbled on, the time has been filled. There are so few pages in my engagement pad, or empty hours in the day, or empty rooms in my life in which to stand alone and find myself. Too many activities, and people, and things. Too many worthy activities, valuable things, and interesting people. For it is not merely the trivial which clutters our lives, but the important as well. We can have a surfeit of treasures.

Anne did not often take her own wise counsel, although she passed it on.

At the other end of the social spectrum was E.B. White, who tended to lean far away from the limelight and the social bustle. Quiet and introverted by nature, he filled his days, but tended to fill them at his pace and with his writing. I have been rereading the exquisite Essays of E.B. White. White's writing is deceptively simple, so clean and clear that you read and then catch your breath in sheer delight. In one, he wrote:

There is one big boulder down in the pasture woods where I sometimes go to sit when I am lonely or sick or melancholy or disenchanted or frightened, and in combination with sweet fern, juniper, and bayberry this old rock has a remarkable restorative effect on me. I'm not sure but that this is the true energy, the real source of man's strength.

Fall is just over the horizon and conserving—canning and harvesting—is in the air. I don't have a rock but I can sit for hours on my deck and watch the bees ply the sunburnt flowers. Doing so has a remarkable restorative effect on me.

"Conserve" also means to preserve with sugar and a conserve is a candied fruit mixture, much like a very thick jam. It is time for me to take stock. It is time to candy those memories and store them against the darkening days, the gray winter ahead.

It is time to conserve.

Saturday, August 22, 2015

Inch Seventy-Eight: Farmers Market


We have an active and thriving Farmers Market in our downtown, Wednesday afternoon and Saturday mornings. You can buy jams, jellies, local produce, regional cheeses, plants, soaps, baked goods, and such at our market. In its first year, some 12 years ago, I sold baked goods and so kept my boys in shoes and pizza for the summer. I have good friends who are either selling or are volunteers to keep it running smoothly, so any trip to the Farmers Market is a chance to visit and reconnect and hug and share.

This morning, however, I was only walking by the market to get to our local library, so I could return a book. And I would have have made it, except for the young woman who, in addition to produce, was also selling art work.

I stopped and pointed to one. "Is that for sale?"

Yes. She told me her price. I held up the library book. "I have to return this first," I said, gesturing down the street towards the library, "and then I need to stop at my bank, but I want that."

And about fifteen minutes later, I handed her money and she handed me my painting.

I asked her if it was hard to part with paintings and she laughed. "Oh, yes," she exclaimed. "It is like selling my children." I cradled the painting I had just bought. "Well, if it is any consolation, this one is going to a good home."

I haven't hung it yet, but it is in my study as I type this. I can look over my shoulder and see it.

My blogging friend Darla at Bay Side To Mountain Side is a huge proponent of local art and the art economy. She would totally understand buying art instead of tomatoes and corn this morning. The tomatoes and corn can wait. The art could not.

Friday, August 21, 2015

Inch Seventy-Seven: Small Wonders

This is what I call a Maine morning: chill and dewy in the early hours, warming with a bright but not overbearing sun now that it is almost midday. I went for a walk with my friend Patricia earlier this morning and the long-sleeved jersey I wore was not a bit too warm. While I type, the last two loaves of zucchini bread for the season are in the oven and the towels are in the wash. The zucchini bread will come out probably about the time I finish hanging the towels on the clothesline to dry.

This has been a most unusual summer for central Ohio. It has been cooler than usual. We have not turned on the air conditioning one time, and there has been only one or two days when it even crossed my mind that air conditioning might be nice. There have been days when I have left for work wearing a sweater; there have been evenings when I have curled up to read with a throw over me for the warmth.

In short, just about perfect.

This has been a week of change for me and Warren here. I have started what I consider "traditional" chemotherapy this week. The drug I take is administered intravenously two consecutive days, three consecutive weeks, wait a week, then repeat. Myeloma chemotherapy is in a niche all its own in the chemotherapy world; no hair loss, typically no intense nausea, and time-consuming not because the drug takes so long (it takes about ten minutes for the infusion) but because my veins must be flushed slowly with saline for an hour prior and flushed more quickly for 30 minutes afterwards.

This week was a good introduction to how blown apart my schedule (and Warren's by proximity) will be for the indefinite future. Add that my arms are bruised and I am tired. There were two nights of lost sleep thanks to a low dose of Decadron through the IV and the nausea has hung off on the far horizon since Tuesday, enough to remind me it is here.

In short, I am resigned.

So small wonder I am taking such pleasure in this spectacular day, the smell of cinnamon and cloves rising from the kitchen to my upstairs study, the anticipation of taking down the sun-bleached towels later today. Small wonder that I laughed at Warren's playacting this morning before he drove to work, chatted with a dear friend in the old neighborhood when I walked over to meet Patricia, hugged Patricia hard when we parted ways after our walk. Small wonder that as we walked this morning, heading around the familiar park loop, I often turned my eyes to the sky, drenching my soul in the burning blue. Small wonder that I am holding the moments of this day close to my heart: the finches in the coneflowers, the bees hovering in the blanket flowers, the soft sweetness of the homegrown cantaloupe that my dad dropped off off last night. It is these small wonders that will carry me through the new sector of Cancerland I find myself wandering in right now. It is these small wonders that will rally me when my spirits flag in the days to come.

It is these small wonders that make up this moment.

Saturday, August 15, 2015

Inch Seventy-Six: A Short One

We have been out of town for four days. This was our vacation that started out as the take-2-weeks-and-go-to-Colorado vacation, then the take-1-week-and-go-to-Fallingwater-Gettysburg-DC-and-Virginia vacation, then became three-nights-and-four-days-then-home. (Yes, we did Fallingwater and Gettysburg.) I told a number of people that one more cut and it would have been the let's-drive-to-Prospect (a nearby village)-and-have-a-medium-sundae-instead-of-a-small vacation.

The Symphony and its incessant demands upon Warren first and our household second is the reason the vacation got cut down, but as I quickly learned during our abbreviated travels, my health and energy levels were not up to a lengthy, extensive road trip. (Food for thought as we peer into the future.) I loved Fallingwater (my first time there), I loved Gettysburg (my third or fourth time there), and I loved turning back into our driveway at about 6:45 tonight.

I am too worn out to write much and not yet ready to reflect on everything, but I wanted to talk briefly about the Gettysburg Address. You cannot be at Gettysburg without being aware of Lincoln's speech, 271 words (by the most accepted version) that some historians say presented us with a new perspective on what the vision of the "United States" really meant.  So it is no surprise that the Address is prominent throughout the Visitor's Center, and that in addition to hearing it in the film "A New Birth of Freedom," one can also sit in a gallery devoted to the Address and hear it repeatedly.

Whenever I have heard or thought of the ending of the Address, I have always heard the prepositions stressed: "that government of the people, by the people, for the people, shall not perish from the earth. "But in the version I heard this week, the stress was different: "that government of the people, by the people, for the people, shall not perish from the earth." It was such a radically different reading that I walked back to the one gallery and listened to the Address three more times. 

To put the emphasis on the people turned the Address inside out for me. It has always been meaningful; now it became powerful as well. 

We are not engaged in a great civil war in the same way this nation was 150 years ago. It is difficult to be at Gettysburg and not realize the tremendous scope of that battle and that war. But we are caught up in a time of uncertainty and unrest. For me and many of my friends, this is a time of feeling we are losing precious ground on issues of race, gender, fairness, equality, civility. As the 2016 presidential race gears up ridiculously early and the GOP frontrunner is a flamingly offensive, misogynistic, racist bigot, I think back to Lincoln and those 271 words.

Of the people.

By the people.

For the people.

Let us indeed hold tight onto that hope.

Saturday, August 8, 2015

Inch Seventy-Five: Bills

I was surprised to see a bill from the hospital in the mail. I'd had a liver biopsy early in July, and had taken care of all the charges (the remainder of my 2015 out-of-pocket deductible, a whopping $95.00 at that point) when I had pre-registered.

So nothing prepared me for a balance owing of $2342.00.

When I got over my shock, I called the billing department of the hospital's parent conglomerate. The customer service agent I spoke with could not have been nicer. After asking me a few questions, she put me on hold.

It was a long hold. When she came back on, she said, gently, "now stay with me on this." She went on to say I received the bill because the hospital had failed to bill my insurance company the full amount. She said she had already flagged the account and sent it back to be billed properly. She then apologized.

Stay with me on this? Apologize? Was she kidding? I was giddy with relief that it wasn't more serious. (I am in the middle of an insurance appeal on a hefty procedure performed at Mayo in June, so I am a little sensitive about medical bills right now.) 

I started laughing and thanked her for her help. I told her I'd almost had a heart attack when I had opened the bill.

The customer service agent spoke up, her voice warm with humor. "Oh, no, no. We all die owing some bill, but this one is definitely not one to have a heart attack over." 

I hung up and thought about her comment. "We all die owing some bill." What a great thought. It puts death and finances in perspective, doesn't it? 

Don't get me wrong. I live frugally, I pay my bills promptly, I don't run up charge accounts. Truth is, I don't even own any credit cards.

But not every bill comes in the mail. Not every bill represents payment for tangible goods or services. Some bills are from the heart: a friend's thoughtfulness, a stranger's good deed. So many bills are kindnesses one can never repay. 

I just this week resigned my seat on our Civil Service Commission. Civil Service is a city commission that approves hiring procedures for our fire and police departments. I have been a commissioner since 2006, and stepped down only because my energy has waned so much so that I could not longer give it the time and energy it deserves. I finished the monthly meeting, came home, and drafted a resignation letter effective at the end of the September meeting. I sent it electronically the next morning. As I noted on Facebook: One of the harder letters I have ever written: my resignation from the City Civil Service Commission. I wanted to step down before I had to step down, but I still had tears in my eyes when I hit "send" on the email.

For the rest of the day and into the next, I received wonderful emails and Facebook comments from friends, my fellow commissioners, and City staff. Some of them brought tears to my eyes; one of them made me cry, sitting at my desk at work.  

It was wonderful.

These are the bills I will die owing. Not bills telling me where to remit payment or how to pay online, but bills of the heart, handed to me freely with no thought of repayment, but which I nonetheless will never be able to repay, for the amount owing is beyond calculation.

Saturday, August 1, 2015

Inch Seventy-Four: The Hard Conversation

The surgeon and writer Atul Gawande gave me a beautiful gift when he brought out his latest work, Being Mortal. It is a book I have read twice now, it is a book I plan to have next to me as I navigate the dim path into the future.

The thrust of Being Mortal is that the medical profession (and we as a society) avoids discussing end of life decisions honestly and openly. Gawande calls for his colleagues to learn to have "the hard conversation" with their patients. He writes of his own shortcomings as a surgeon in having that talk and of learning to do so in part as a response to shepherding his father (also a doctor) through the final months of a terminal illness and realizing, now in the role of family member and not doctor, how the medical profession skirts the topic and how that complicates the ability of the patient to make meaningful personal choices about end of life issues.

As someone with a terminal illness that is increasingly unmanageable, I have taken his message to heart.

Gawande poses the hard conversation as a series of questions for the patient to reflect upon and discuss:

  • Does the patient understand her prognosis?
  • What fears and concerns does the patient have about the prognosis and disease?
  • What goals or activities does the patient want to accomplish or do?
  • What is the patient willing to do to achieve those goals?
  • What is the patient unwilling to do?

By having an open and honest conversation about the answers to these questions, the patient (and the patient's family and supporters) and the doctor should be better equipped to map the medical way forward towards the inevitable end.

I heartily concur.

I have been off treatment since the third week of May. I will resume treatment, traditional chemotherapy using the drug carfilzomib, in mid-August. The delay has been due not to intransigence on my part. Rather, it took me, my Mayo oncologist, my local oncologist, and a gastroenterologist this long to sort out other medical issues before clearing the way for chemotherapy.

I have loved not being in treatment, despite the advance of the cancer. I am not looking forward to beginning a new line of treatment, but I am resigned to it at this point in my disease's progression. While I wait to start, though, I am being woken up regularly around 5:00 a.m. or so, rocked (albeit gently) awake by being sick. Not violently sick, not nauseated, but sick.

Sick as in "oh, yes, that's cancer."

This morning as I lay in bed, feeling the cancer rock in my body, my mind drifted to Gawande and the difficult conversation. I found myself starting to answer his questions in my head.

Do I understand my prognosis? Yes. I have a terminal illness, I have outlived the statistical prognosis, and while that has given me additional years, that has also put me in a minority class that gets smaller and smaller. Oncologists are not sure how treatment works on long-term patients. In real terms, that means that Death has moved considerably closer, from standing in the front hallway to strolling into the living room, where I am expected to serve him dessert and perhaps an after-dinner brandy.

What fears and concerns do I have? I fear pain. I fear not knowing whether my organs will start failing before the myeloma finishes its work and what that even means. I fear being able to continue to be able to work to keep my Cadillac insurance in place. I fear the monetary costs. And I fear being at the mercy of other people's schedules and lives.

What goals do I have or what activities do I want to continue for as long as possible? Being with my husband. Being with my children and their families (2500 miles away). Being with those friends and other family members whom I cherish and love. Volunteering at the Legal Clinic. Reading. Writing. Finishing my novel. Walking. Serving my community. Baking. Savoring the change of seasons. Chocolate. Traveling to the extent affordable and physically possible. Continuing my job and seeing some new projects to fruition.

What am I willing to do to achieve/continue those goals and activities? I am willing to continue treatment for now, even though I resent going on traditional chemotherapy. I may be willing to participate in trials. I am more than willing to continue to eat more or less decently (but I am not giving up desserts), to walk as much as possible, to be conscientious of living a healthier lifestyle.

What am I not willing to do to achieve/continue those goals and activities? Another stem cell or bone marrow transplant. Dialysis if my kidneys start failing. Treatment for the sake of treatment if it will not extend my life and will cause my quality of life to deteriorate. In fact, just about anything that causes my quality of life to deteriorate. End of life medical intervention.

Those are my answers from where I stand now. They are not set in concrete, but they are not casual, spur of the moment answers either. My long-suffering oncologist, Tim, is very reluctant to hold any end of life discussions, but he knows with me that he has no choice. We had one earlier this week in which he (finally) admitted that quality of life is the trump card, but then he immediately looked at Warren and flung out, "Trust me. When she says 'I'm done,' I will still have treatment options available!"

I believe his heartfelt appeal fell on deaf ears, albeit ears accompanied by a loving and sad heart. Warren and I have already had some of the hard conversation. You cannot live with the person you love the most and not have it. I will have it with my children when I head west in September. And I will continue to have it with myself when I am awake at 5:00 a.m., when I am listening to the katydids rasp in the summer night and reflect on the coming fall, when I hold life close to my heart and know I have to open my hands and let it go.