Why Jacaranda Season?

In the weeks just after Frank’s diagnosis in 2009, it suddenly seemed that everyone had cancer or knew someone who did. Funny how when something touches your life, it suddenly becomes visible in the lives around you. Even now I’ll be out at the store or on the street and I recognize chemo pallor or signs of liver disease in a stranger; an odd sort of connection forms and I find myself hoping they have all the help they need.

What Frank had – carcinoma of unknown primary (CUP), metastasized to the liver – is both uncommon and deadly.  “Unknown primary” means the original source of the cancer can’t be found, and it applies to 2 - 5% of cancer diagnoses. Since current cancer treatment is based on knowing the cell type that first became malignant, treatment options are much less effective. Fewer than 25% of all CUP patients are still living one year after diagnosis and the median survival rate for patients with liver involvement is only 2 -3 months.

We took a hell of a win on him living for nearly two years. Not long enough by far – but long enough to get to paradise in Florida and give him more than a year of good life here despite the ongoing chemo.

We reveled in the simplicity of being alive and together. I heard a song once about “Live Like You Were Dying” and I can tell you that Frank didn’t give a wet slap about going sky diving or Rocky Mountain climbing and his bucket list didn’t include climbing mountains in Tibet or romancing beautiful young strangers, if you’ve seen that movie.

Some of our best moments were sitting on the couch laughing at America’s Funniest Videos or Bugs Bunny. Him taking a walk in the pouring rain on a warm December day, under a very big umbrella. Joking about climbing over the back fence to throttle the neighbor’s squawking parrot. Pruning our citrus trees and savoring the fruit. Listening to him practice Mozart’s clarinet concerto in A (K.622), getting his chops back after too long a break. Relaxing on the porch on a lovely evening, listening to the spring peepers while the sunset faded down to deep, deep blue.

Frank was constantly delighted by the flora and fauna here – egrets strolling through the front yard, oranges and grapefruit for free, a small startled snake outside our door, rain lilies that sprang up overnight, and the endlessly active lizards on the window screens, being stalked by the cat. One fine May day he rushed in for the camera, exclaiming about the most amazing purple tree. It was a jacaranda in full bloom, which of course we’d never seen up north. The photo he took that day is the one on this page, and I never see a jacaranda tree in bloom without thinking of him and his charming capability to get excited about little things.

There’s a predictable pace to the spring blooming season here. The azaleas are first, erupting in hot pink explosions all over town. Then everything bursts into life, with jacaranda coming for a few weeks towards the end.  When the crepe myrtle flowers next, you know that summer’s heat is just around the corner. Jacaranda season is fragile perfection balanced on an edge, transient and precious.

So when I decided to start a blog, I chose The Jacaranda Season for the title. It’s my symbol of the universal in the personal, and the personal in the universal. Physical death is universal and extremely personal when it comes close. But so is life, and the fact of a certain end should not lead to an uncertain, bitter, or resigned life.

While he was dying we both learned so much about how to truly live:

Stop postponing what you really want to do.

Don’t miss a chance to make someone you care about feel happy or loved.

Waste no energy on the stupid stuff or on mean people – poor things, they have to live with themselves anyway and surely that is punishment enough.

Only you can say what you want to do and when you want to quit.

Do the most important things and let go of the rest.

Treasure the little moments – they are what life is made of.

Be kind to yourself.

Let others help.

It will all be alright in the end. If it isn’t alright, it isn’t the end.  

6/29/2013

"So Much Unfairness of Things"

In considering Frank’s battle with cancer and losing him far too soon, I’ve thought often about the classic short story So Much Unfairness of Things, in which a young man is expelled from private boarding school for cheating on a Latin test to avoid his father’s disapproval.

The title just stuck in my mind I guess – I’d read it in Mr. Teale’s 7^th grade English class. At that time love was an impractical mystery, boys were incomprehensible bundles of noise, and I was an awkward nervous girl whose bookish shyness could be mistaken for being stuck-up or so I was told. Plus I couldn’t play softball to save my life, which was the social test of acceptability in the rural town where I’d been abruptly transplanted.

Around the same age, Frank had gone through his own awkward phase. After one too many run-ins with bullies, among them a neighborhood punk and a Nazi phys. ed. teacher, one summer he built his own Nautilus-style gym equipment and put it to good use. Come September he established his primacy by climbing the school rope hands-only to the ceiling, then settled the score with the punk. How he relished repeating that bit of triumph and self-mastery!

By the time we met, we were grown-up people with our own lives, careers and interests. He was 30 and single, I was 38 and divorced. I vividly remember the first time we met – it might sound corny but there was this little bell going ding-ding-ding somewhere in my head and heart saying “This guy! This one! That’s what you were looking for!” (What he remembered about that meeting is that I was wearing a short black dress with red tights and black boots – thank you, Donna Karan!) It didn’t take us long to figure out that the feelings were very mutual, and for 15 years we never parted without a kiss and a “Love you – see you later.” 

I don’t know if he ever read So Much Unfairness of Things; Frank’s tastes ran more to engineering, physics, and experimental science. But he had a sharp sense of justice and personal responsibility. Would he have felt sympathy for P.S. Wilkinson, who sought to escape judgment through a dishonorable act and ended up with a life sentence of shame?  Not sympathy perhaps, but he would have understood.

Life is inherently unfair at least from the short view, or we’d all be tall blond rich astrophysicist organic gardeners with Ferraris or something like that. It happens that good people die young, even very young, or are broke, or ignored; bad people live to healthy old age, or are misleadingly attractive, or win the Lotto. Thankfully the reverse is also true, there’s just no such thing as a level playing field and there’d be no game if all the players were exactly the same size with the same attributes and outcomes. Plus very boring.

But the trick seems to be finding ways to make life good anyway, as much as that brings up images of inspirational platitudes with no more depth than a $2 greeting card. Frank and I spent a lot of time discovering ways that worked for him and for us; sometimes fumblingly, sometimes in a stroke of intuition, sometimes from sheer perfect serendipity. 

And the only advice I could give to someone else living in the face of loss is to be willing to fumble, follow your intuition, and enjoy the gifts of serendipity that will come, because life is good after all.

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Postscript: In writing this, I had to look up C.D.B. Bryan, who wrote the short story I mentioned above. His son has a wonderful website at http://saintbryantv.blogspot.com/ with many photos, reviews and articles from the 67 boxes found in his father’s attic, including a fantastic piece about Kurt Vonnegut.

On it I found this quotation from the author:

“My praise for cancer lies in the gift it gave me: the gift of knowing I was loved.”

I find this both moving and very sad. Talk about unfair. 

The Day that Everything Changed

Four years ago today my life changed radically beyond anything I could have imagined. I’ve tried to write about the experience before now, but have managed only bits and scraps on the backs of envelopes, a never-shared blog with just one post, and an online journal that was supposed to send me email reminders to post in it but never did so neither did I. Technology failed me there, as did my own initiative.

Time passed, various adventures intervened and so here I am now, giving it another go. What happened? Why talk about it? What difference did it make? What difference can I make as a result?

I can’t answer everything at once, or perhaps even at all, but I’ll regret it if I never try. And one of the big lessons of this experience was the very real necessity to get up and do the things you’ve only thought about. Or in this case, lounge on the bed with a laptop and a glass of iced tea, hoping the cats will leave me alone long enough to put some sense into this.

Four years ago I lived in Buffalo NY with my husband Frank. He’d recently lost some weight and had a bad bellyache that wouldn’t go away, so was finally arm-twisted into going to the ER at ECMC (Erie County Medical Center). He hadn’t seen a doctor in 20+ years and was proud of how strong and healthy he was. Plus his mom had gone into the hospital with a minor infection when Frank was 13 and she died 4 days later, and I think he had retained a certain suspicion of the medical profession ever since.

Frank left by himself in the morning and was gone all day; he had brushed off the idea of my going too. By 5pm he still had no answers and I was very antsy, so got a ride out there and we sat in a little exam room off the ER for several more hours. He was grouchy and hungry, hadn’t eaten all day; they’d done blood tests, X-rays and a CT scan, but had given him no results or explanations. Finally around 10pm a doctor came in … I think his name was Dr. Cloud, I remember he looked like someone who went on skiing vacations, fit and tan and young, with blue eyes that matched his scrubs.

He said, “There’s something on the scan of your liver that looks suspicious; it could be an infection but you have no fever, or it could be hepatitis but you have no risk factors for that, or it could be cancer.”

The word hung in the air between us. I froze and just looked at him, my heart pounding, because I understood that this was their answer and he was breaking it gently. “We’re going to admit you and do some more tests and get you some treatment, and we’re really, really happy that you came in when you did.” He left. I looked at Frank. All he said was, “Well that sucks.”

What followed was a blur. We were both in shock. It was like stepping off a curb on a street you know well and falling 15 feet into an invisible black hole that closes over your head. I tried to hold off the dark for both of us, did the paperwork, met the nurses, got him settled, hugged and kissed him and promised I’d be back first thing in the morning, then left wishing I could climb into that bed and stay.

As I was finally leaving some time after midnight, two young people – a tall slender girl, very pregnant, and a solidly built fellow in a football jersey – were about 10 feet ahead of me walking down the corridor towards the exit.  Now, they didn’t know I was there, it was quite late, the hallway was otherwise deserted, and he could be forgiven for thinking he could get away with releasing a truly impressive fart without notice.

I couldn’t help it – I laughed out loud.

They turned around, mortified at the sight of a frazzled and entirely unexpected white woman probably the age of their mothers. The girl began to apologize, scolding him for being rude, and he looked anywhere but at me. I approached saying, “No, no, don’t apologize, it was funny - thank you for making me laugh on the worst day of my life. My husband is upstairs and we were just told he has cancer and I don’t know what’s going to happen and I am scared to death.”

She put her arms around me and prayed out loud, the first of many good-hearted angels we met on this suddenly alien landscape.

Went home, sent a bleak email to my sister asking her to call me first thing in the morning, and went to sleep wrapped up in Frank’s sheets, his pillow wet with my tears at the end of the long day where everything changed.

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Of course this was only the start of a story that was by turns terrifying, happy, exhilarating, heart-breaking and beautiful. Such is life. Such are days, since every day is an anniversary of something remembered or not. What will you remember about today?

6 June 2013