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.

Saturday, July 25, 2015

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.

Saturday, July 18, 2015

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.

Friday, July 10, 2015

Inch Seventy-One: Days of Gold

During the weeks of Hurricane Katrina in 2005, my morning routine was to wake up, turn on the computer, pull up the New York Times, and weep.

Lately it has been deja vu all over again. While some of the tears are good (the announcement of the Obergefell decision, for example), many have been in sorrow and anguish at more sobering events, especially the murders in the Emanuel African Methodist Episcopalian Church by a white racist terrorist. I have been appalled by the reactions to the shooting, which are not the actions of a mad man, but the actions of a domestic terrorist. I have suffered through tortured explanations of mental illness and calls for gun control, but have heard few honest discussions of racism and racial hatred. (I swear, if Hitler were around today, there would be an ongoing debate of mental illness and whether he should be allowed access to Zyklon B, and no honest discussion of the fact that he and his nation murdered eleven million people, six million of them solely because they hated Jews.)

As I listened to the discussions spin this way and that way about the Confederate flag at the South Carolina statehouse, I was not sure which way the decision would go. I have heard cries of free speech, I have heard cries of Southern (white) heritage, I have heard a lot of racist cant wrapped in the First Amendment and the American flag. (And lest I be tarred with the "you don't get it" brush, let me point out that during the Civil War, my father's family, which was in the border state of Kentucky, fought on both sides. His paternal line fought for the Union and wore blue, his maternal line, who may have been slaveowners, wore gray and fought for the Confederacy. So yes, I do "get" it.)

Since yesterday, the tears have been in admiration and gratitude for South Carolina Representative Jenny Horne:

I have listened to this speech six or more times and have cried each time.

This morning I had a liver biopsy to check scarring on my liver before starting a new type of chemotherapy. After coming home and sleeping for several hours, I awoke to see this:

I started crying seven minutes into the video, when the state troopers came out to lower the flag. But it was at nine minutes and ten seconds, when the flag is finally lowered, that the tears came in earnest.

There are times I despair of the polarization and deep divides in this nation of ours. There are times when I weep thinking we are going backwards in time to an uglier era. There are times when I feel we will splinter into little tiny mini-states, each with our own dearly cherished beliefs, each with its own supreme confidence that its viewpoint and its viewpoint alone is the only right position, which frees all of us from the hard work of listening thoughtfully and carefully to different points of view.

And then there are days of gold, in which a woman like Jenny Horne speaks from her heart, no matter how much her voice shakes, and I am encouraged to go on.

Friday, July 3, 2015

Inch Seventy: The 4th of July

The 4th of July, one of my favorite holidays, is upon us again. Tomorrow afternoon we will be setting the stage for the evening's concert; tomorrow night will be the 30th annual concert by the Central Ohio Symphony, followed by fireworks. Thanks to the U.S. Supreme Court's recent ruling in Obergefell et al. v. Hodges, Director, Ohio Dept. of Health et al., I imagine the Star Spangled Banner will sound all the sweeter this year and the fireworks seem all the brighter. 

In 1776, shortly after the signing of the Declaration of Independence, John Adams wrote to his wife Abigail about the momentous occasion:

I am apt to believe that it will be celebrated, by succeeding Generations, as the great anniversary Festival. It ought to be commemorated, as the Day of Deliverance by solemn Acts of Devotion to God Almighty. It ought to be solemnized with Pomp and Parade, with Shews, Games, Sports, Guns, Bells, Bonfires and Illuminations from one End of this Continent to the other from this Time forward forever more.

Being married to the Symphony, I tend to see the local fireworks over the tops of buildings as a number of us labor away after the concert to strike the stage. It is fun but it is not the same as sitting out on the road or in the flat practice fields, staring up at the sky.

Never mind. This year I have fireworks close at hand, in the vegetable garden that never became a vegetable garden. They do not pop and boom, but they do hum with bees. And in their colors are the colors that will light the night tomorrow evening.


"Bonfires and Illuminations from one End of this Continent to the other from this Time forward forever more." 

And flowers. 

Friday, June 26, 2015

Inch Sixty-Nine: This House

This house—our house—is a mess.

There is no other way to put it. Between the music festival this week (concerts or rehearsals every night), my health, Warren's schedule without the music festival, and other family (the larger family) matters, there is no time, no energy, no bigger picture, no anything to spare.

Monday night we decamped to a spare bedroom. It is the same bedroom in which I have my writing desk and which was already in a state of—ummmm—disarray before we moved in.

It was in a state of chaos before because I have been purging again: eight bags to Goodwill, personal papers to recycling or shredding. There were still those piles of "do I send this out to Ben (or Sam) now or wait?" and "well, what about that?" Those stacks got hastily shifted to the perimeter of the room when I cleared and made up the bed at 11:00 p.m. Monday night.

Our sudden late night exit was due to the invasion of bedbugs from one of our travels or one of our activities. It was the dermatologist examining Warren who said "have you looked for bedbugs?" We did that night. The good news is that we caught them early; the great news is that the mattress in our bedroom was long overdue for replacement.

The bad news is that we are now strung across two bedrooms since we are sleeping in the spare room but our clothes are in our bedroom.

Well, for that matter, we are also strung across two bathrooms right now too. Warren and his son yanked out the toilet from the little bathroom adjoining our bedroom (it is too small to call a "master bath;" a "master bath closet" is more accurate) because it had been leaking and the floor needs replacing. We might as well paint our bathroom while we are at it. Our toiletries and the shower we use are in the bath closet; the working toilet on the second floor is in the other bathroom, which is conveniently located next to our current bedroom.

The toilet, incidentally, is in the other spare bedroom, along with all the art work from the first floor which came off  the walls last May when we repainted and had new carpet installed before Ben and Alise and Ramona came to visit.

The first floor has its own issues. The whole floor is the staging area for the Symphony's Executive Director and timpanist (i.e., Warren) and last night we filled the living room with the remains of the percussion ensemble's performance. Did I also mention that there are more crotales in this house right now than most major percussion manufacturers keep in warehouses at any given time? And there are Zildjian hats of different colors scattered around as well, courtesy of last night, including the checkered flag one perched on the kitchen table right now.

And let's not forget the bedding which I washed and dried on HOT post bedbug search just in case they had any bright ideas of migrating. It occupies three-quarters of the couch right now.

I am writing this longhand outside on the back deck in the early morning. I like to start my mornings out here when I can, listening to the birds bringing up on the day. From where I sit, I can glance to the right and see the garden. This year's garden is a riot of flowers...and grass and weeds. The flowers are perennials—some wintered over, some established by me in past years—none of which got moved to new beds because of schedules and travels and illness and the fact that Boger's son never brought back his dad's most excellent rototiller and so we did not get the new garden beds dug.  The garden is beautiful if you don't look too closely, but if I don't get some of it cleaned up, the grass and weeds will choke the pathetic tomato plants.

The other beds are hardly any better, although I did finally get the suckers around the ornamental cherry cut back after the robins fledged.

You must also appreciate that to get to the garden from the deck, although it is a short distance, you must navigate past the bagged soil that never got opened and used, the spare cargo trailer that occupies that bulk of the weedy brick patio and that I want Warren to give to his son because I cannot easily reach the garden with it in the way, and the small heap of wood (ends of old boards) that came up from the shed in the backyard and never got used this winter.

E. B. White wrote an essay, "Memorandum," in October 1941 in which he listed all the miscellaneous chores he really needed to do that day, ranging from bringing in the pumpkins to writing a long overdue letter to replacing a broken light in the workshop. White rolls through a lengthy to-do list, then concludes "I've been spending a lot of time here typing, and I see it is four o'clock already and almost dark, so I had better get going. Specially since I ought to get a haircut while I am at it."

I know just how White felt. It is already 6:30 a.m., I need to get showered and dressed, fix breakfast, and get to a half day training session.And I really should take another bag of stuff to Goodwill while I am at it.

Saturday, June 20, 2015

Inch Sixty-Eight: Out of the Ashes

In some versions of the fairytale Cinderella, as told by the Brothers Grimm and not Walt Disney, the wicked stepmother throws two shovelfuls of lentils into the hearth ashes and commands Cinderella to pick them out if she is to go to the ball. In other versions, it is linseed (flaxseed) that is hurled into the ashes. What is thrown is not important. What is important is that Cinderella is given the impossible task of separating the small beans or seeds from the grit and ashes.

Cinderella cannot complete the task, but she does not have to. Instead, the turtledoves who nest in the tree over her mother's grave and the other birds of the air fly down and quickly peck out the clean from the dirty, the food from the cinders.

I have been back from my trip to the Mayo Clinic for two weeks now. There is still a medical issue to sort out and I still have to sit down with my oncologist at month's end to discuss the next line of treatment. All the same, I have a good idea of where I am at and what lies ahead. The relapses are coming more closely together and the branch I am way out on is getting thinner and cracklier.

I have been sharing the story with those closest to me. At times I tell the tale with a large dash of bravado. Sometimes I tell it more quietly. Sometimes there are tears. Judith reached over and held my hand while I talked. Mel leaned her head against my shoulder. Margo put her arm around me when both of our voices broke.

The one universal response is "what can I/we do to help you?" It is said with fervor, it is said with love, it is said with commitment, it is said in any number of ways, but it is always the same. "What can I do to help you?"

My answer is always the same. Right now, nothing really. But the day will come when Warren and I will need a helping hand or some friendly assistance. And that is when all these wonderful people in my life, the ones already flocking around me, will descend upon my lifer like Cinderella's birds and pick the good of the ashes.