Toss the Magic 8 Ball

“So…what are we looking at in terms of time? Weeks? Months? Years?”  

Of all the difficult questions cancer patients, their loved ones, and the world at large ask, this is the worst.  It’s the worst because it’s emotionally-fraught. But it’s also the worst because it’s the most futile. 

When an oncologist is confronted with the “how long do I have” question, they may as well put a calendar on the wall and chuck a dart in its direction. There are so many variables that come into play, so many factors between NOW and THEN that can change the answer – hopefully for the better. Words meant to be reassuring sound unsettlingly vague: “It won’t happen fast.” (Define “fast.”) “She has plenty of time.” (“Plenty” in whose opinion – that’s pretty damn subjective.) No wonder doctors dance around the question; chances are their predictions have been wrong as often as they’ve been right. The only truthful answer is, “nobody knows.”

Unfortunately, “nobody knows” is a hard answer to give your friends and relatives when they raise the life-expectancy issue. It’s a true answer, but it sounds cold at best, and at worst, flippant.  As a result, your answer is usually overly long, because the list of variables that comes into play is lengthy and complex. “It could be years,” implies that it could also NOT be years. “It depends on how well the chemo works,” raises the possibility that chemo might not work. Is the patient planning to take frequent flights to unsettled, hostile nations? Prone to driving like a bat out of hell? Likely to go on a drinking binge before bungee jumping? Embroiled in an affair with a paramour whose spouse packs heat? There are lifestyle issues to consider that can effect one’s chances of “beating the odds.”

On the other hand, I relish replying “nobody knows” to casual acquaintances and virtual strangers who are simply prying. I call this syndrome ProgNOSEYness. If anyone who is not in your intimate circle of confidants is rude enough to call and ask the “how long” question, you have my permission to tell them to hang up and call God.

People with cancer handle the “how long” question in different ways. Some of my friends chose never to ask the question, not wanting to be burdened by an arbitrary date circled in their day planner. Others have asked the question the minute they received their diagnosis…only to spend hour upon hour debating ways in which to change an answer they did not like hearing.  Still others have been frustrated by their oncologist’s vague reply; no one really wants to hear their doctor say, “We have no idea.”

I admit it: I fell into the Magic 8 Ball trap. Last week, I paid a visit to remarkably accurate psychic, one whose predictions consistently come true (do not judge me!). As I nudged up against the “when” question I sensed I had crossed the line. “Your guess is as good as mine,” wasn’t the answer I was looking for, but it was a good answer, reassuring in a way.   “When” for my husband is so far in the future, he will die of old age – or be shot by a jealous husband -- before the cancer gets him.

That’s my guess and I’m sticking to it.

Won’t Ask/Don’t Tell

It’s an interesting phenomenon: some of our closest friends are the most reluctant to introduce the subject of cancer, while virtual strangers (and estranged friends) seem perfectly comfortable – and in some cases morbidly eager – to probe for as many details as possible.

To some degree, this might be a generational quirk. My husband is older and comes from a generation that avoided raising unpleasant topics that might create a moment or two of social discomfort. Cancer was alluded to as the “C” word; the fact that you might be living with it made you, by association, an Unmetionable. As my husband observes, “they don’t know what to say, so they say nothing.”

Some folks, by comparison, could use better filters. It takes me aback when someone I barely know probes beyond the basic facts, asking the most intimate details about symptoms, treatments, the reactions of family and friends, and life expectancy. (I’ll write about the later in a separate entry!) Even more off-putting is the “friend” or relative who could not be bothered to stay in touch for years and suddenly wants to make a sweeping – and inconvenient – reappearance in your life, circling round your loved one’s cancer like a bird of prey. It gives me the creeps.

You know who your close friends are – the people who “need to know,” versus “want to know.” And it’s true that some of your closest friends may not be the people in your day-to-day life, but you’ve sensed their continued love and support over the years. They are genuinely concerned and their questions are almost certainly meant to be supportive as well as reassuring. We’ve chosen to extend our circle of information to include these people. Long-distance love is still love and we value it.

Family and friends whom we see regularly, whom we consider confidants, and who can provide genuine comfort and assistance were the first to hear our news, though we’ve tweaked the script from time to time, depending on the audience.  All appreciated being included in the “inner circle,” but several are uncomfortable discussing my husband’s illness in front of us. By raising the topic ourselves – a brief but candid comment usually suffices – we give our friends permission to have a conversation about something that’s weighing on their minds as well ours. Sometimes when you live with cancer in your life, you find yourself in the role of the comforter. In appropriate measure that’s perfectly OK.

As for the Bad News Birds, I feel no obligation to share intimate details or to make room in our busy lives for their presence. I try to shield my husband, children, and friends from these predators. I give the barest, unembellished details and change the topic decisively. I am getting much better at saying, “We’d really rather not discuss it right now.”

There is another category of confidants in my life, small but essential. They are new friends that I’ve made as I stand…or stood…by my other friends with cancer.  We may not be very “best friends,” our paths may cross only occasionally, but we have formed a bond because we’ve walked the cancer path together. They will be wonderful, seasoned traveling companions on the road that lies ahead.

Objects in the Mirror are Closer than They Appear

The family and friends of a person living with cancer frequently engage in a premature Death Watch; meanwhile, persons living with cancer are often distracted by a very different vigil, transfixed by their personal Rearview Mirror. Obsessively “looking behind” has exactly the effect you might expect: you don’t see the opportunities lying ahead of you until it’s too late. Keep your eye on the road, people!

Looking back and reliving the rewarding moments of a life well lived can be comforting if it doesn’t become an all-consuming obsession.  What’s sad – and I believe, dangerous – is when the Rearview Mirror is foggy, clouded by regret.  Rather than illuminating your loved one’s successes, accomplishments, contributions, legacies, and most fulfilling memories, this particular Rearview Mirror reflects a highway peppered with road signs that read “Woulda.” “Coulda.” “Shoulda.”  It’s time for YOU, dear reader, to become a backseat driver.

I’m not suggesting that we sugarcoat the past, glossing over important mistakes and shortcomings. Every life has its potholes; acknowledging them -- and when necessary, apologizing for them -- is critical to making peace with one’s life. What I AM saying is let’s put them in perspective and move on.  Instead of watching “Woulda, Coulda and Shoulda” go zipping by, you can help by pointing out other essential landmarks, “Achieved,” “Shone,” “Contributed,” and “Loved.”

When reflection centers on “failure” (almost certainly an exaggeration), guide the conversation towards success and accomplishments. When you start hearing, “I haven’t done anything with my life,” arm yourself with evidence to the contrary.  I’m surprised how often this type of negative reminiscing centers upon perceived business and professional disappointments, negating generosity, intellect, and affection.  You -- Daughter, Son, Spouse, Sibling, Dear Friend -- are living proof that your loved one has been successful.  Careers, community service, masterpieces of creativity are meaningful contributions, but truly valuable legacies are the family and friends that have been carefully cultivated over time with love and support. 

 Of my friends and family who have lived with cancer, I can’t think of a single one whose life will be measured and deemed wanting; but there have been plenty of days when I needed to drive that message home. It’s important to shine a light on the mountain of non-monetary achievements and memories your loved one has amassed over her or his lifetime.  The person who laments, “I haven’t done anything with my life,” needs to turn from the Rearview Mirror and look deeply into the eyes of someone who admires them.  That’s the true window on life. And it’s a healthier, happier, view by far.

Put Away the Binoculars

When someone in your life – particularly someone very close to you – is living with terminal cancer, it’s hard to keep every day from becoming a Death Watch. Even though your friend or loved one may be symptom-free, even though their cancer may be in a holding pattern, even though they are LIVING with cancer and may very well be focused on enjoying life and living, too often you find yourself focused on the dying part. When will it happen? How will I know when it’s begun? What will the final journey be like for this person I love? How will I rise to the occasion, manage the anxiety and sadness, make their passage easier in the face of my own grief?

When you allow death to become your overarching concern, it robs you of your ability to live in the moment and enjoy the present. Instead of spending the valuable hours, days, even months ahead fully sharing the LIFE of your loved one and the savoring the pleasures that remain, you dwell in a shadow place, where Death and darkness clouds your every waking thought.  

You know what this means? It means Death has already become victorious. By engaging in a premature Death Watch, you are robbing from your cancer-battling friend a chunk of the positive, energizing, healthy recognition they deserve for having made it through another stretch of outrunning their disease. They need to have their symptom-free days celebrated and shared. If you are engaged in a Death Watch, you are distracted (and distracting). You cannot honestly and positively participate in the wonderful realization that your friend – and not the cancer – is winning.

But there’s something else that’s rotten about a premature Death Watch. It’s killing you. Cancer is not only eating away at the one you love, it’s chipping away at your emotions, your spirit, and yes, your physical health.  You have tuned into The Death Channel and have become a captive audience. Believe me, Death is having a field day with this – it’s a twofer for the Grim Reaper.

Hard as it is, do not give Death this early lead. Don’t give Death the space to start its victory celebration way earlier than is warranted. Cancer is terrifying enough, without letting it dominate your life, gnawing away at the happy memory-making experiences that lie ahead for you, your friend, and your family. 

When you wake up in the morning, instead of focusing on “How much longer do we have…?” try to train your thoughts to imagine “How many more opportunities for joy…”  If you can measure time in terms of the probable pleasures still to come…instead of on the unpredictable/unknowing final days…health will have the upper hand over cancer.  And that can only be good for everyone involved.

FU 2 Cancer

Fuck You to Cancer…Face Up to Cancer…either way “FU2Cancer” has been my battle cry for the past 20 months.  

In early 2010, three anchors in my life were diagnosed with cancer: my husband, Clarence, my dear friend and design partner of 30 years, Stephanie, and one of my very closest friends, Pat.  Pancreas, breast, pancreas.  All three were diagnosed within six weeks of one another, blindsiding and befuddling me and leaving me madder than hell. How unfair could life be?

Turns out: pretty damn unfair.

It’s been said that when you’re dealing with cancer (or anything else for that matter), you play the hand that’s dealt you. Stephanie and Pat drew the cards that no cancer patient wants to draw: “Stage IV” “Metastasized” “Inoperable.”  We knew from the get-go that these were not winning hands.

Clarence, we thought, had drawn a considerably better hand. He had the “Early” card, the “Operable” card, and for many, many months the “Remission” card. (His surgeon actually tried to play the “Cured” card. Turns out he may have been bluffing.)

My husband fought his Purple* People Eater with a Whipple surgery  in April of 2010; the Rock Star Surgeon (he of the premature “Cured” card) removed a third of the pancreas, numerous lymph nodes, part of the duodenum, the gall bladder, and a portion of the bile duct. Recuperation was long, painful, and complicated, but we were rejoicing: Clarence’s prognosis was very, very good.  You can withstand almost any distress if it holds out the promise of life.

While Clarence recuperated, Stephanie and Pat embarked on their own distressful journeys, though theirs were not without occasional glimmers of hope – even humor. “Responding,” “Improving,” “Beating the Odds” and (my personal favorite) “Hasta la Vista, Baby” were among the cards that were drawn, weighed, and played by my friends in the summer and fall of ’10.

You know where this is heading, so I’ll cut to the chase.

Pat battled her cancer with a ferocity that would have made Boudicca proud (Don’t know her? Look her up!). Stephanie tangoed with her cancer, the epitome of calm, sophisticated grace.  The fact that they both outlived their initial prognosis was little consolation when they died within two weeks of each other in July ’11.  Stephanie’s death was a double loss; I had to regroup professionally as well as emotionally – I’m still working, with limited success, on both counts.  Pat’s death left a hole in my life that I will never be able to fill; I don’t even want to try. I miss them both more than I can possibly tell you and not a day goes by when I don’t pick up the phone to ask Stephanie a question or find myself making plans for some extraordinary adventure with Patsy. Guess I’ll need a hotline to Heaven and a plane ticket to the Land of the Dancing Spirits. Sigh.

Despite these colossal losses, cancer wasn’t finished busting my chops.  A comrade and fellow writer: breast cancer. My Pilates instructor: breast cancer.  The managing director I hired, mentored, and considered my protégé: breast cancer.  My rage – my blood-boiling fury – was almost unbearable.  When I wasn’t wearing my FU2Cancer tee shirt, I was bellowing that curse…sometimes silently, usually into my pillow when sleep refused to give me cancer-calming relief.

This week, Clarence took the bullet we naively thought he’d dodged. He picked up the deck of Cancer Cards and drew “Returned,” “Stage IV,” “Metastatic,” “Inoperable” and…as if to soften the blow “Early,” and “Slow-Growing.”  

I can’t speak for Clarence, Pat or Stephanie. I can’t speak for my two daughters, my seven stepchildren, Pat’s family: Amanda, Allison and Jack , Stephanie’s scores of nieces and nephews, the  theater’s staff, the legions of loved ones grieving for friends and family members who have lived...or continue to live…with cancer.

I can only speak for myself. This is my story. It started with a FUCK YOU. It’s mellowing into a FACE UP. It’s full of tears. But it’s also, oddly, filled with some laughter. Because I happen to believe that hilarity in the face of cancer isn’t only appropriate, it’s healthy. 

Cry with me, laugh with me, howl at the moon with me if it helps you get through another day.  The Purple People Eater may have returned, but it’s got to deal with me first.

*Purple is the official color for pancreatic cancer awareness.