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Returned to the Four Winds Cancer Clinic yesterday to begin “lightweight maintenance chemo.” I didn’t sleep well the night before, my blood pressure was elevated, and I was strangely a little nervous. But once again the lovely and caring people who we are all so fortunate to have working there cheered me up, checked me out, made sure San and I were comfortable, pronounced me “looking good” (always makes me smile) and plugged me in. The whole procedure took about an hour – way better than the seven hours or so I used to do – and so far there have been no negative side effects. I slept soundly last night and feel good today.
Here’s the thing: Chemo is a four-letter profanity masked as a five-letter friend. No one likes it, not in the Clinic or on Facebook. We fear it. We tolerate it because it promises a longer life and in most cases that I’ve witnessed a longer quality of life. But to achieve that desired result requires opening your veins to a poison regime that seizes control of your body and mind, unleashes an army of silent killers inside of you, and sometimes can be very unpleasant afterward, for you and for those around you, for days at time. And, with a cancer such as mine, in the end you die. Those are the facts.
***
The truth is that I had hoped – we all had hoped and prayed – for a longer remission. But pancreatic cancer of the sort that is fond of my cells, a deadly cancer that turns otherwise perfectly ordinary, hard-working, and righteous proteins into mutant ninja cells, has a history of finding a way, even after a remission, to cause more trouble. So it is with undeniable sadness that I report that I am no longer in remission, no longer “cancer free.” The damned little mutant ninjas running amok in my vascular system are back, which is an empirical fact. My CA-19/9 marker is at 670 this week, after registering 500 the week before.
That’s not good.
That said, Dr. Robin also gave us some very good news. The tumor/scar tissue on my pancreas and lesions/scar tissue on my liver are stable, which means that whatever the mutant cells are doing is still at a formative stage and – here’s more good news – may be reduced by a timely return to what she calls “lightweight maintenance chemo.”
So beginning next week I reenter the Room of Orange Chairs.
***
Nothing, like something, happens anywhere”
--Philip Larkin
On Wednesday I had a follow-up CT-scan, this time on my upper chest to check for any damage from six months of chemo and to give my new oncologist, Dr. Robin Obenchain, a more complete picture of what my dear ol’ Granny – Nellie Grimm Saylor – used to call “my innards.” I also had the usual telltale vials of blood removed from my body. On Friday San and I met with Dr. Obenchain to discuss the results. And the news was good, mostly and good … maybe.
That’s kind of how the news goes in the frontier territory called Remission. Yes, I am a “cancer survivor,” but at least with pancreatic cancer, the detour out of Cancerland means that I am never more than a few short sentences away from the longer, harder narrative, and that harder narrative is always lurking, forming, insisting, somewhere inside me no matter how I fight it – how we fight it – each and every day.
It also means that the ongoing storyline between these wild narrative territories is never exactly linear. As one of our oncology nurses and my personal “chemo wife” Monica puts it: “it’s more of a roller coaster ride.”
***
What are days for?
Days are where we live.
They come, they wake us
Time and time over.
They are to be happy in:
Where can we live but days?
--From “Days,” by Philip Larkin
This morning I arose early and made rich dark Sumatran coffee just as a splendid pink-and-blue-sky dawn broke over the Superstition Mountains east of here. It was pure sky poetry. I gave thanks to God for this gift of another day of cancer-free life and offered my daily prayers on behalf of others.
I then began my everyday habit of reading, writing, posting, and otherwise engaging via the Internet the world outside of my home. After awhile San joined me and later I made us a Greek omelet – spinach, feta cheese, mushrooms, a little garlic, a little oregano, lots of halved Kalamata olives – and a toasted potato bagel. After breakfast San to writing her dissertation and I completed the most ordinary of chores: folded laundry, cleaned the kitchen, wrote a letter of recommendation, and edited out of a forthcoming book chapter some inspired Beatles’ lyrics from the Sgt. Pepper’s song “A Day in the Life” that were too costly to include. By the time Nic got up – ah, I envy the ability of the young to “sleep in” – I was still contemplating this glorious ordinary day.
Another day when being “cancer free” means I am no longer “that guy” in the blue chair that everyone else worries about.
***
Life is eternal, and love is immortal,
and death is only a horizon;
and a horizon is nothing save the limit of our sight.
~Rossiter Worthington Raymond
Sandra and I lost a friend to colon cancer this week: Rebekah Smith Whitehouse. We met her last summer when we arrived for the first time at the Room of Orange Chairs.
She was perched in one of the chairs waiting for her chemo treatment to begin. “Hi!” she said with her characteristic big smile and genuine joy in her voice. “I’m the poster girl for chemo!” She spread her arms wide and broke into a laugh. We laughed with her.
I’ve been quiet on the blogging front for the first week of this splendid New Year, mostly because I’ve been trying to figure out what to write about now that my cancer is in remission.
In the olden days I used this blog to write about politics, communication, and culture, and while that thematic triad will never totally disappear from my writing, most of you have let me know that since my diagnosis back in June, you’ve been more interested in what I had to say about my cancer and its treatment. I don’t plan to abandon that theme, either, although just repeating how happy I am to be “cancer-free” and how grateful I am to everyone who helped make that happen isn’t likely to hold most readers’ attention for very long.
Hence, there was a bad word defining my present conundrum. What should I write about?
***
“The object of a New Year is not that we should have a new year.
It is that we should have a new soul.” - G. K. Chesterton
Probably I have been spending too much time reading and listening to “end of the year” reviews, “best of,” “worst of,” and other tributes to 2011. That must be it.
Surely it is their unfortunate influence that urges me today to join in the timeless habit of gossips, town criers, old farts, bar cronies, grannies, and purveyors of real and imagined newsprint everywhere and develop my very own version of “The Year in Review.” It’s taken me some time to formulate a way of telling it, given that the genre of such year-end reviews necessitates at least some mention of world affairs and my year has not exactly been about much of that, at least not the last six months of it, wherein my attention was deflected by cancer. But as you will see, that deflection into Cancerland led me to think quite differently about what was important and what must be done now to honor what I’ve learned.
***
Last year at this most merry of holiday (holy-day) seasons, we were back in Alabama visiting our relatives and enjoying the hospitality of San’s folks, Martha and Clarence Bray. I was in high political mode, having just published a book Counter-Narrative to great reviews by progressives and predictably panned by right-wingers.
So, because one of my all-time favorite Christmas stories is Charles Dickens’ A Christmas Carol, I then wrote a series of political blogs that brought Scrooge into the 21stcentury as what in this year’s fashion we would call one of the 1%. My version begins:
Ebenezer Scrooge, Teapublican from Down There, tallied his books for 2010 with a self-satisfied smile. It had been a good year, a very good year. His disinformation business, funded by the Brothers Koch and popularized by his old pal Rupert Murdoch’s propaganda outlets had succeeded in convincing an increasingly docile electorate of many false things. That the world was not warming and those who said it was were dreaded socialists; that health care for all was really a liberal government takeover that would lead to—he licked his oversized lips—“death panels”; that increased regulation of the oil and food industries was further evidence of the government’s unwarranted intrusion into their lives and profits; and that lowering taxes for the rich—including himself, of course—was as important to the maintenance of democracy as slop was to the maintenance of pigs. Oink! He smiled. Yes, this had been a very good year!
“Gratitude is not only the greatest of the virtues but the parent of all others.” - Cicero
Readers of this blog know that a couple of weeks ago I was pronounced “cancer free” as a result of a blood test. The confirmation of this status, however, depended on a CT-scan that I had two days ago. I have to admit I had some anxiety about the test, even though I feel fine. So here’s the really, really good news: the scans of abdomen came back with no growth or spread of the disease, and, as Dr. Sud put it, “all that remains is probably scar tissue.” Hurrah!!!
We will, of course, continue to monitor that status, but Dr. Sud is confident enough to have lengthened the next scan to three months from now instead of the usual six weeks. Put simply, it doesn’t get any better than this. For the foreseeable future and barring any unanticipated change, I have – we have – my life back!
So it is bearing this wonderful news that I want to acknowledge what I am calling “the gratitude particle” in my life. I want to say thanks to those who have done so much to enable my spirit and my healing, to support our family, and to offer encouragement, love, humor, stories, and prayers, all of which had important parts to play in getting us from where we were six months ago to where we are today.
***
One of the more curious aspects of being “in remission” occurred to me when I was working on my book, Final Draft. Back in September when I started writing what I still envision to be an adventure story about a boy who followed a white rabbit down a hole and who then grew up to be a curious fellow indeed, I knew I needed something to preface that old rabbit story. I needed something that combined my lifelong interest in reading and in crafting narratives with a final “summing up,” by which I mean some useful conclusions about what those narratives and living by the logic of them have meant in my life and what I have learned along the way.