True Grit

True Grit

This winter, my wife and I, along with our two sons and daughter-in-law went to see the re-make of the classic western, True Grit. I liked this version of the movie more than the original. I think the Coen brothers better captured the coarseness of an era when one’s self-respect found moral value in vengeance.

The protagonist, a young girl named Mattie Ross, wants justice for her father’s murder. She hires Rooster Cogburn, a gruff hard drinking marshal, to lead her into the badlands of the old west. Off they go on a journey laden with comedy and violence, their saddlebags full of cornbread and bullets.

The theatre in our hometown of Hood River is small. My wife and I always sit in the back row. There, our older eyes and stiffer necks can relax. The rest of our family sat up front. About halfway through the movie, my oldest son, Noah, headed to the lobby. The rubber tires of his wheelchair whispered on the carpet as he rolled past our seats.

His paralysis resulted from a vehicle accident in 2002. A careless mistake on the part of an uninsured driver led to a broken neck and an irrevocably changed life.

Noah surrounded by his posse at graduation from the U of O in 2006. .

The road we’ve traveled these last eight years roughed us up pretty good. The wrong done to my family felt so egregious, I yearned for the visceral satisfaction of revenge. Like little Mattie in the movie, I too, wanted the perpetrator to face a day of reckoning.

Though the other driver erred, my son’s accident was, … well, it was an accident, unexpected and unintentional. Much of my pain stemmed from grief without closure. I wanted to indulge in the primal urge for retribution, an urge, mind you, that accounts for the popularity of movies like True Grit. My guns were loaded, revenge was mine, but I had nothing to shoot. Anger grew from the frustration, a cancer that soon metastasized into depression.

Meanwhile, Noah persevered. His success at dealing with the injury helped me heal. He painstakingly completed his degree at the University of Oregon, graduating summa cum laude with a BA in Spanish. Then he enrolled in law school at the University of California, Berkeley. He paid for his graduate education by winning a prestigious scholarship from the Jack Kent Cooke Foundation. He finished his final term last December, attaining high honors. Just this week, he accepted a position with the Environmental Protection Agency as an associate attorney in their San Francisco office.

Noah

Along the way, I managed to contract a blood cancer, multiple myeloma. Some people suggest the disease resulted from stress. Perhaps … it’s as good a theory as any. At one time, I would have happily agreed to bargain my health for the health of my son. Ultimately, it doesn’t matter. What matters is that our family can now pause to celebrate. The last eight years moved at an agonizingly slow pace but the box canyon of paralysis was not, after all, a dead end.

Celebrating was exactly what we were doing at the showing of True Grit. Following a short break, my son returned to his seat. We all watched as Mattie got her man amid a fair amount of entertaining collateral damage.

In the real world, Noah has regained much of the independence stolen from him. The true achievement, however, was his distillation of loss into purpose and anger into courage. Re-routing his life took a lot of grit. And that, is all the revenge I need.

The Cat Came Back

Curly hard at work.

Recently, the cat who keeps me company at the Post Office, Curly, disappeared. She adopted our office as her home seven years ago. She spends her day sleeping in a chair atop a red, white, and blue blanket knitted for her by one of our customers. At night and when the office is closed, we place her outside to fend for herself.

This year, winter came early to the Hood River Valley. Our first snow fell on November 9th. Then, just in time for Thanksgiving, the weather turned cold, very cold. While acclimating to the season’s onslaught, I was also grappling with my doctor’s suggestion to renew treatment for my blood cancer, multiple myeloma.

I understand the proactive thrust of Dr M’s idea. Clinical trials demonstrate that low dose oral chemo can extend remissions in patients who have undergone a stem cell transplant. Nonetheless, I waver. The fact that I feel good makes me hesitate. Why set the clock ticking on treatment now? Shouldn’t I wait until I’m symptomatic?

Our home after a recent snow storm

As I contemplated what to do, the cold snap broke and torrential rains threatened to flood the valley. Last week, the snow returned. Several brief storms dusted the trees, decorating the shoulder of each branch with white epaulets. Then, the full moon joined with the solstice and bore the gift of a lunar eclipse. In years gone by, such heavenly triangulation would have prompted pagans to sacrifice an animal. After all, angry Gods must be appeased.

That was when Curly disappeared.

In a world full of unpredictability, Curly’s steadfast appearance at our back door each morning, is appreciated. Throughout my workday, the transactional banter that accompanies the selling of stamps often includes an inquiry about Curly. Customers want assurance that she is safe. In this way, she acts as a touchstone helping to forge bonds in the community that would otherwise be absent.

After four days of worrisome questions from admirers, my faithful companion reappeared. She seemed no worse for wear, just hungry and sporting a suspiciously torn claw on her back foot. I theorize that she entered a building from which she could not escape.

Curly’s return brought to mind an old folk song: The Cat Came Back. The tale it tells speaks to the resilience of cats, uncanny in their ability to land on their feet in the direst of circumstances. As the song progresses, it takes on sinister overtones. The cat not only comes back but does so with a vengeance that grows in proportion to the effort to be rid of him.

Spanky, another cat who comes back a lot

Something similar occurs when cancers relapse. Remissions imply that one’s cancer has disappeared. With many blood cancers, however, the disease exists undetected in a dormant state. It is myeloma’s capacity to evolve that makes it, thus far, incurable. The cancer has resourcefulness equivalent to a cat with nine lives; its true regenerative force, though, may actually be infinite.

In a New York Times article, The Cancer Sleeper Cell, by Siddartha Mukherjee, the author postulates: “Chemotherapy unleashes a ruthless Darwinian battle in every tumor. A relapsed cancer is the ultimate survivor of that battle, the direct descendant of the fittest cell.”

Hence, my reluctance to begin a regimen of chemo; I wonder if doing so when my quality of life is high not only eliminates an option but also makes the cancer smarter. Like Curly, I do not want to enter a building from which I cannot escape.

I am a pragmatic optimist. I respect the ingenuity of life in all its forms, be it a life threatening cancer or a cleverly resourceful cat. I also admire the persistence of science. Right now, I’d say the brilliance of researchers is gaining on the lethality of MM. One of these days, perhaps in my lifetime, the cat, or rather, the cancer, will not come back.

Trees

Trees

“Keep a green tree in your heart and a singing bird will come.”

Chinese Proverb

Raked leaves from a sugar maple

In November, the deciduous trees on our property cover the lawn with a radiant multi-colored blanket of leaves. Each fall, I spend several hours raking them into piles. Then, I haul them to my flowerbeds where they act as nutritional mulch.

Our property was once a strawberry farm and before that, part of a forest. We purchased the land with a small house over thirty years ago but never worked it. Instead, we raised two boys who enjoyed a playground of 4+ acres.

One of our sons was born in what is currently the den, the other nearly so, though complications at the last moment precipitated a rush to the hospital. We commemorated the first-born’s birth by planting a Sugar maple tree. Two years later, our second son’s arrival was marked with a Quaking aspen. Though we stopped at two children, the tree planting was only beginning.

As our sons grew, it became a ritual for the three of us boys to plant a new tree each Mother’s Day. The value of our gift lay in the legacy tribute of a tree’s life. Furthermore, it came wrapped within the comedy of our antics. On one occasion, the boys and I broke a water pipe while planting a Japanese maple. That day may have been my sons’ first lesson in how to swear. Now, years later, it endures as a humorous anecdote in our family history. I like to imagine that tree’s delicate beauty stems from the bile spilt at its christening.

L-R, Maple, Walnut, Aspen

The first tree dedicated to my wife was a white birch. Its multiple trunks and drooping branches now reach 30 feet into the air. Many more followed one at a time, along with random plantings of bunches of Douglas fir, poplars, and Norway maples. Despite the dozens of additions, room exists for many more.

To plant a tree affirms life beyond the boundaries of our short stint on earth. While my cancer causes me to sometimes brood about mortality, the trees I’ve sown connect me to the imperishable wonder of creation. The routine chore of gathering leaves to share with my garden folds me into the mystery of how life everlasting encompasses us all.

Against that backdrop, I attempt to put my disease in perspective. Lately, it stutter-steps: one moment advancing, the next retreating. The cancer, multiple myeloma, seems reluctant. On consecutive visits, my blood labs crept upwards in a telling category. Then, at my most recent appointment, the movement stalled.

Maples in full color

Further proof of the lazy nature of my disease came from a series of X-rays on my pelvis and legs. Pain in my thigh and hip made me wary of advancing cancer. One of the sneaky ways this disease harms the patient is by causing lesions in the bones. Often, someone with myeloma does not know the extent of the damage until a bone spontaneously fractures. This development is not bone cancer, per se; rather, it is a result of the blood cancer interfering with the normal process of bone loss and replacement. Fortunately, nothing was found on the radiological exam but my renewed peace of mind.

Overall, my condition gives me reason to rejoice. I survived the first onslaught of multiple myeloma, much as an old tree endures a lightning strike. Remember, in 2007, the prognosis was five years. Given the status of my disease, its ambivalent nature and my constitution’s ability to respond to treatment, I consider that a poor estimate. No one can say how many years lie ahead. Nonetheless, I think there will be plenty of time to plant more trees.

As Summer Fades – A Cancer Prayer.

As Summer fades and the air is filled with signs of Autumn.
As the leaves start their change in colour and their sprinkling fall;
the rhythm and flow of life continues its clever path.
This in-between state that suspends betwixt the seasons, is all my heart desires.
To call on the Gods to allow a stay with compassion,
cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,
as grateful diamonds of joy spill from my heart.
Take these vibrant days of colour with their smiles intact, allow for no fear,
for you have always been my brave one but you are more so now…

Do not snap and break this plan I ask,
keeping this Autumn complete and in my whispered prayers.

All Rights Reserved @ 2010
Photo from Susie Hemingway’s Collection.

Back Among the…

mostly living. This is the first time since the transplant back on March 29 that I have felt energetic enough to post something. Since the transplant I have been a bit sick, mostly nauseous, thanks to all of the drugs I’m taking. I have mostly been just tired, having no energy at all. I was sprung from the hospital on Friday April 9, although parole might be a better description, since I have to go in for check-ups once or twice a week. Everyone tells me I’m doing well, either on or ahead of schedule. I have to admit, it doesn’t always feel that way. But today I had enough energy to read, and to write. So now it’s up to me to press myself a little more each day, regain strength, and the ability to focus. Right now I’m good for about 1or 2 hours a day. I’m hoping to double that by next week. I have to admit, it feels good to write again. Thanks for your prayer, I assure you they are felt.
Deacon John
Tuesday of the Third Week of Easter
April 19, 2010

Borange 2010-04-01 11:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.

Borange 2010-04-01 10:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.

Transplant day

I recieved my transplant this morning at appoximately 10:A.M. CDT. I was given enough drugs to effecively put me to sleep for a good portion oItalicf the day. My mother, sister (not the donor) and of course my wife were present. Everything seemed to go well, and as of now I feel alright, let’s just see what the next few days bring. The entire procedure only took about 15 minutes, although the benedril and ativan and anti-nausea meds knocked me out for a good portion of the day. Now we just wait a few days and see how I feel then. So far this whole thing hasn’t been too bad. Hopefully it will continue this way The one drawback is I will completely miss the Triduum, my absolute favorite time of year. But what better time to start a new life than Holy Week? I will for the first time pray the Evening Prayer of Holy Thursday and Good Friday, since Evening Prayer is not said by those participating in those liturgies. Unfortunately my tiny universe will preclude me from The Eucharistic Celebration on Easter Sunday. I do believe a Eucharistic Minister from a near by parish will at least bring Communion. All of this is a small price to pay, missing one Triduum for many, many more.
Deacon John
Monday of Holy Week
March 29, 2010

Merci, Gracias, Todah, Thank You

…for your kind words and good wishes. I know they are heartfelt, and I return them to you a hundred-fold. Some readers who are not comfortable adding a comment (or haven’t figured it out) have sent notes that also mean so much to me. You lift me up on a cloud of kindness and my aches and pains seem to disappear.

You’re all making me out to be much more noble than I am (which is: not at all) but I’m going to simply enjoy the view from the cloud. I will continue blogging, at least for a while, and when I do sign off, I will leave the blog up in hopes that there is something helpful for other cancer patients. Thanks again,
The Coot

Big C Update

I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.

Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.

I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
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P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.