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.

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.

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.

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.

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 not 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.

Inch Seventy-Three: Seeing the Forest For The Trees

There is the saying about not seeing the forest for the trees. Friday I smacked right up against it.

Out grocery shopping on a bright day (a rarity in this summer of rains), I turned into the parking lot of the second store, knowing I had eggs in the car from the first, knowing I only needed a few things from the second, and hoping for a scrap of shade somewhere in the vast expanses of asphalt.

There was a small island, with small trees, on a far side of the lot, and I saw a sliver of shade touching the forward slot of two.  Fixating on that, I drove over quickly and parked with a sliver of shade just reaching into the front seat of my car. Victory!

As I exited the car, I glanced at the slot behind me. The other tree in the island was shading a sizable portion of that parking space. I had not even noticed it in my haste to find shade, instead zeroing in on the first spot I saw. I jumped back in my car, put it in reverse, and moved the car into the more generous shade.

As I walked into the store, I thought of the adage about the forest and the trees. I thought about the opening of Dante's Inferno: "Midway upon the journey of our life I found myself within a forest dark, For the straightforward pathway had been lost." And I thought of that scene in The Hobbit when Bilbo and the dwarves are walking through Mirkwood, a seemingly endless and dark forest. Bilbo is sent to the top of a tree to see if he can spy the end of the woods. He does not realize, when he looks out over the treetops and sees nothing but trees in all direction, that they are in a natural bowl and it is something of an optical illusion. Disheartened, he reports back that the trees and the forest go on forever.

Unlike Dante, unlike Bilbo and company, I am not lost and wandering. And I was able to see the forest for the trees, after I stopped looking at the trees.

Inch Seventy-Two: Whistling

I heard a sound this morning, early, that is so rarely heard anymore that I had to listen for a few seconds before placing it.

It was someone whistling.

In searching for the source, I soon saw and heard a tradesman across the street, working on the neighbor's driveway, whistling while he carried his brushes and buckets up and down the driveway. 

We are always surrounded by sound here. There are the birds, of course. The cicadas are back for the summer and today being a warmer day than we have had as of late, they set up their chatter early. There is street traffic and the occasional hum (more audible at night) of the nearby highway. If there is a light breeze, as there is while I type this, wind chimes start sounding. But there is never anyone whistling.

This guy sounded as if he were whistling for the pleasure of the sound. Or the pleasure of the morning. Or perhaps both.

Where did whistling go? It is rare (unheard of) that I hear anyone whistling anymore just for the heck of it.  Is it because so many are plugged into their iPods or other devices that whistling has fallen by the wayside? Have people forgotten how to whistle? 

Jo March famously "sat up, put her hands in her pockets, and began to whistle" just to annoy Amy in the opening chapter of Little Women. The Little House books are full of whistling: Pa whistles constantly, Laura whistles and even sings a song about whistling to Almanzo when they are courting. And I believe it is somewhere in that same canon that I came across the saying that "a whistling girl and a crowing hen always come to some bad end." 

As of late, I have been piecing my days together, more crazy quilt than carefully crafted pattern. Today is stitched together with whistling.