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The E and the H Words

I can’t believe I said it. I actually used the “E” word talking about my cancer.i-have-cancerpost

E. As in Enjoy. No, no, no. I do not enjoy — and never have enjoyed – having cancer. Cancer Sucks, as my t-shirt shouts. But there’s cancer my disease, and then there’s cancer my experience.

Cancer, my disease: I had my regular, semi-annual checkup in July, another checkup on another birthday. The results could have been better, but to have hoped for such would have been pure greed: My PSA, a marker of how well I’m keeping my cancer at bay, was up a scant 0.01 (to 0.10) over the past six months. Great results, and my oncologist was effusive, saying, “It’s really6 slow growing. You’ll probably die of something else.” (“Really” to the power of 6 because I think he said “really” something like six times to emphasize his point.)

So that’s where I stand today – medically speaking – precisely nine years after my prostatectomy on Sep 11, 2007.

And then…and then. There’s cancer my experience: all of the people, the life adventures, the challenges, and self-discoveries that have enriched my life only — and only – because I have cancer. They’re big things, and they’re little things, many sad, some uplifting, but I would have missed out on them all if I didn’t have cancer.

Like the woman at the cancer survivors’ gathering who declared, “I’m not grateful I have cancer, but I am grateful I’ve found out what I’m made of.”  For this is what only we cancerians know: What would I do if I got cancer? For others, it’s rhetorical; for us, it’s real. She knows, and she found out what she’s made of. Ironwood, I suspect.

Or reporting to the infusion bay and overhearing through the curtain that the person in the next bed is being sent home — without treatment — because her blood counts aren’t right. It’s bad enough to undergo the anxiety of a test, or to steel yourself for the harsh side effects of a treatment. But then to be turned away after such emotional expense, all for naught?

Or the email from my Seattle Cancer Care Alliance infusion nurse, Kim. Subject: “I have cancer.” What do you say, what do you do when the woman who has been with you for so many years, for so many treatments, with her needles, meds, pumps, laughter and, most of all, her loving care, herself is diagnosed with cancer? I say, thank you, Kim, thank you for everything. May you rest in peace.

***

I’m on the elevator to ride down to the parking garage at Seattle Cancer Care. There are four of us:

  1. Me
  2. Sunny, middle-aged woman — doesn’t look like a cancerian
  3. Non-descript man with
  4. His wife bundled up in a heavy coat, wearing a ski cap over her chemo-bald head and staring at the floor. Surgical mask covers her mouth and nose.

The lights on the elevator panel show we’ll be stopping on parking levels B, C and D. Me: “Looks like my grade card.” Door closes.

Level B. Non-descript man and cancer-wife leave elevator. Door closes. Sunny, middle-aged woman says something about how she always feels better coming to the cancer clinic. I say, “When I see people like that” — I point to the door — “I have no problems today.”

Level C. Sunny, middle-aged woman agrees: “There’s always someone who’s worse off.” Door opens, and she steps out. Abruptly, she turns to me, and holds me perfectly in her eyes, brandishing the absolute brightest smile I’ve ever witnessed: “I was given 18 months to live,” she says, “and that was three years ago!”

Door closes, and she is gone – even before I can ask her name.

But I’d like to think it’s Hope.

Kicking the Can(cer) Down the Road

My most recent semi-annual cancer check-up came last year, quite coincidentally, on my birthday.

“Semi-annual.” That’s the check-up that arrives so soon that there couldn’t possibly have been that much change in your cancer. Yet it’s also the check-up that’s so infrequent that maybe — just maybe — enough time has elapsed for something to have gone haywire. This incalculable equation (time➗cancer=?) is, in part, why we cancerians get so anxious as our test dates draw nigh. And there’s nothing we can do to swing the balance of test results; there’s no strategy that will improve the outcome; and there’s certainly no studying in the hope of getting a better score on the test.

It will be what it will be, when it will be, and, all too often with cancer, you feel like you’re just along for the ride.

A cancer test on a birthday? A day to celebrate — or not.

At reception in the blood-draw lab:

“Your name?”

“Curry. C-u-r-r-y.”

“And your birthday?”

“Today.”

“Oh! Happy birthday! Any special plans?”

“That’ll depend on the test results.”

It would be an overstatement to say that, when he delivered my results, my oncologist seemed a bit giddy. But in the din of delivery of good test news, I think I heard him say something like, “With numbers like this, you’ll live forever.”

To be sure, my PSA had risen over the previous six months, from 0.06 ng/mL to 0.07. Really not that much of a rise at all – even a rounding error? — and so, over a birthday dinner of steak tartare, the champagne flowed: celebration times two.

Later, as I added the test results to my PSA spreadsheet, I noticed that I’d been here before, that I’m back exactly where I was on Oct. 4, 2010: a PSA of 0.07. (Reminder: PSA levels reflect the progression of my cancer.)

Of course, that was before my PSA rose to 0.10 and then to 0.11 and then to – well, before it could go any higher, I underwent 36 treatments of salvage radiation, trying to rid myself of cancer once again. Yet today, I remain a Stage 4 cancerian, one who’s back where he was five years ago. And that’s when I finally and fully grasped — and came to embrace — the import of ‘managing your cancer’: We’re kicking my can(cer) down the road.

We’re buying me time.

Except that, with cancer, buying time is truly about buying life – and all of the wondrous adventures and delights woven into the fabric of life.

Or as my friend David put it: “We celebrated our 25th wedding anniversary…and chose to do it alone, off shooting pictures in the high desert of Arizona…and, most importantly, commemorated and savored a milestone neither of us thought we’d see nearly eight years ago” when his wife, Nancy, was diagnosed. “Oh, what a blessing!”

What a blessing, indeed.

Since my 0.07 PSA reading in 2010:

  • I’ve seen my daughter start and finish law school, marry a great guy, pass the bar and start practicing law.
  • I’ve traveled to stunning National Parks, experienced the wonders of far-off places and loved strangers in strange lands: China, Sri Lanka, Cuba and beyond.
    Version 2

    Loving strangers in a strange land: Huang Gang village, Guizhou, China; Aug. 2, 2012. (Photo ©Colleen Kerrigan)

  • At family reunions, I’ve reconnected with relatives I’d not seen in years, decades even, and together we stoked our family memories, raised toasts to our parents and enriched for the future our shared gene pool.
  • I’ve spent extended yet rich time with old friends and new, sharing memories, stories and thoughts of the past, the present and our futures.
  • I celebrated the 35th anniversary with my bride, a milestone, to quote David, I thought I might never see.

And, perhaps most importantly, since my last PSA of 0.07, six new prostate cancer drugs have been approved, each one with the promise of extending life. Six new drugs since, medically, I was last right where I am now.

So am I truly back to where I was on Oct. 4, 2010?

Not on your life. Nor on mine, because life doesn’t stand still even when cancer threatens to stop your clock.

And there’s a lot more life to pass as we kick my can(cer) down the road.

Of Beginnings, Odds & Ends

Beginnings

Mom

             Mom

Autumn, 1942. Mother is in the hospital for a hysterectomy after years of (what were then called) “female problems.” She awakens after her planned surgery, tactilely examines her abdomen but finds no bandages, no stitches — nothing binding her back together. At the last moment, there had been no surgery, no hysterectomy. She inquires, and they tell her: “You’re pregnant.”

With me.

Odds & Ends

In the popular lexicon of cancer, a doctor declares: “You have cancer.” It is, however, a threadbare cliché, as though every doctor follows this same script, says these same words, and that every cancerian’s life is immediately upended.

I’ve come to understand that, in reality, I was diagnosed twice with prostate cancer — and the first time was the easy one.

It came on March 26, 2007, when the urologist reported the findings from my biopsy: “There’s a little bit of cancer,” he said over the phone. And given everything we could know from that biopsy, surgery would bear an almost-90 percent chance of a cure (no recurrence). It all sounded rather cheery — optimistic odds worthy of my hope. I would have surgery and move forward, and my cancer would be nothing more than a receding episode in the rear-view mirror of my life.

Except for the ‘second’ diagnosis.

Sep 19, 2007. My first follow-up after surgery: the pulling of the catheter, the test for bladder control, a consult with the surgeon and the delivery of the findings from pathology.

“I never expected this,” my surgeon said, with a shake of his head, as he delivered pathology’s findings: cancer in two of my lymph nodes. Not a trace of cancer anywhere else, just in my prostate gland and in two neighboring lymph nodes. I was now Stage 4, advanced prostate cancer, given the lymph node involvement.

What were the odds, I asked, that the tissue samples analyzed by pathology contained all of the cancer that had metastasized from my prostate? “Less than 10 per cent that we got it all,” he said, “a 90 per cent chance there’s still some cancer somewhere.”

Funny how you can go in with a 90 percent chance of a cure and come out with a 90 per cent chance of none.

In a reassuring voice, though, he told me that one of his patients — just like me – was still alive after eight years. I was only 64 at the time, and that hardly seemed like a stretch goal.

Eight years?

“Seven years,” my oncologist said a month later. Seven and a half years, to be exact, was the median survival time in a 1990s study of men with lymph node involvement who, after surgery, underwent hormone therapy, as I was about to. (Qualifiers: It was quite a small study, and there are far more and far better treatments available today.)

But still… The clock seemed to be ticking backwards on me.

Seven and a half years?

That was seven and a half years ago this week.

Neither eight nor seven nor any other number of years has ever been a prognosis for me. They were neither forecasts nor predictions, just numbers, and certainly nothing that’s ever prompted me to get my affairs in order. I’ve never chosen to indulge these time spans – or even discuss them — because I’ve never really found them actionable: There’s nothing I’d do differently. You just do everything you can and take it a day at a time. And live your life.

And my life today – at least the cancer part of it – inches along. At my six-month check-up in January, my PSA – a marker of how well I’m doing – was minuscule (0.06 ng/mL) and rising slowly (up 0.02 since July 2014’s reading). Heck, the first time I had recurrence of cancer, my PSA was rising 0.03 every three months!

No, I’ve not beaten any odds in this, the eighth year of my being a Stage 4 cancerian. But I do remind myself that whatever my actual number of years might prove to be, my life’s all been “free” — every moment of it lived on free, not even borrowed, time since that day in the fall of 1942.

Living with Cancer

Seven years, three months and 24 days into my cancer journey, I’ve arrived at a new way station on this indeterminate itinerary: Living with Cancer.

Oh, I’ve known since pathology reported after surgery (“carcinoma in two lymph nodes”) that cancer would inevitably be a permanent part of my life, that an outright cure was of such low probability that a lottery ticket seemed the surer bet.

But there’s always been a binary quality to my cancer, an either/or state with no middling. I was either no evidence of disease (NED), or, in the event of evidence, my oncologist and I would be gearing up, discussing and planning the next treatment. I once even described my cancer status as “between treatments.”

Not so now.

My semi-annual, July 9 PSA test came back at 0.04 ng/mL, up from 0.03 in January. And the medical plan now is to continue to just monitor this trace amount, to watch it, and to check it again in six months, come January. With a slowly rising wisp of PSA and no treatment planned — none even up for discussion – “between treatments” seems out-of-date and “living with cancer” the more apt description.

To put these nano-numbers in perspective, think of them as the coinage of cancer. I’m now up from 3¢ to 4¢. The actual (and dreaded) recurrence of prostate cancer after surgery is not even medically official until 20¢. And in clinical trials for new prostate cancer drugs, getting a prostate cancer patient below $2.00 is an achievement.

I am, in fact, where a lot of men are dying to be, and dying they are.

I concede that I’ve had to do some heavy mental lifting to wrap my head around this slow rise in PSA and to accept the fact that we’re only going to monitor it, to see how high it goes, and how fast. Later – hopefully, much later – we’ll identify and implement the next therapy, if one becomes warranted.

Heck, I may now even be in a sweet spot of cancer management: a chronic but not (for now) life-threatening disease, one that I can just live with. OK, I can hope.

When I shared my July test results with my cancer-blogger friend Danean, she spoke Truth when she said: “I’ve learned that in this whole cancer odyssey, sometimes the only thing we get to choose is how we react to things.”

And this is how I’ve chosen to react: I embrace this new phase, uncomfortably passive though it feels at times. I’m lucky to be where I am, and my test results could have been worse. And I still do all I can with diet, exercise and supplements to push back against my cancer, to keep my PSA numbers to a tad and make my cancer but a mere chronic illness.

The bottom line is that, for now, I’m neither in remission nor imminently imperiled.

I’m living with cancer, and life is good.

It seems an appropriate time to inaugurate a new t-shirt.

It seems an appropriate time to inaugurate a new t-shirt.

No News Is…No News

Image

Life is good: Curry Reunion, Memorial Day Weekend, 2014, Cincinnati: Seven (of many more) first-cousins, yukking it up. Our family matriarch, Aunt Betty, is in red.

In the written record here over the past three years, you can find a pattern to my regular cancer check-ups: January, April, July, October. Then repeat the next year. JAJO. So you might ask, where’s the report on my April 2014 check-up and PSA test? Is something wrong? Am I OK? Or as I was asked several times at a Curry family reunion over Memorial Day weekend, “How are you doing?”

In a sentence, my oncologist gave me a bye on an April check-up.

I had, in fact, “graduated” to semi-annual, as opposed to quarterly, check-ups, after two years of being no-evidence-of-disease. And then a smidgen of PSA was detected in my January blood test; but at 0.03 ng/mL, that level wasn’t sufficient to warrant regressing to quarterlies, wasn’t enough to shout “biochemical recurrence!” In fact, “we don’t make anything of such subtle differences in a test that is not perfect,” my oncologist said in response to my alarm at January’s (barely) detectable PSA results. (Remember, the presence of PSA and its amount tell me how well I’m doing in my cancer journey. In four words, more is not merrier.)

And (my reasoning here, not my oncologist’s), an April test, whatever its outcome, most likely wasn’t going to provoke any change in treatment or its timing. Waiting until July will give us much greater clarity into what’s going on with my cancer, whether it’s actually recurred, and, therefore, what — if anything — we need to do next.

I’ve walked the road of recurrence before, for a year starting in July 2010, and every cancerian knows the marrow-deep fear of recurrence: One more therapy has been exhausted, is no longer an option, and still the embers of cancer continue to smolder on. For me, I’ve now had surgery and radiation, and they are treatments available to me no more. Thus, if January’s test results do indicate recurrence, I’ll move on down the line for the next in what is a finite number of treatments.

So in April, I escaped the anxiety that accompanies any impending cancer test and the wait for its results — only to know instead the worry of waiting, the prolonged posing of a nagging curiosity:

“Is my cancer back?”

Fried Chicken and Champagne

Tuesday was my quarterly cancer check-up, and we had decided some weeks prior to celebrate the occasion with fried chicken and champagne, a special gift bottle from Sue, a lovely lady and friend at the gym. Fried chicken has become a rare and special meal for me, given the low regard that fried foods must hold in my nutritional pyramid. And champagne because – well, it’s still thee beverage for a Special Occasion.

We made this decision to cheer my Jan 7 check-up – regardless of its outcome — because:

  • Test results indicating ‘no evidence of disease’ (NED) would warrant a celebration of two years with no evidence of disease.
  • Test results reporting a recurrence of cancer would still prompt an appreciation for the 21 months that I was cancer-free.

Either way, NED or no, Sue’s champagne and the Colonel’s chicken would speak to us on a milestone day. Odd, yes, but not all of life’s choices are even.

So that’s what we did, we savored our fried chicken and hoisted our glasses of champagne. But what, exactly, did we celebrate?

As I’ve written, PSA test results tell me how I’m doing in my contest with cancer, and PSA levels of less than 0.03 are considered ‘undetectable’ – no evidence of disease. Higher than 0.03 is a pisser, as I experienced with my first recurrence of cancer from mid-2010 to mid-2011. So what to make of test results that come back at exactly 0.03?

For that’s what the number was last Tuesday: 0.03. Call it barely detectable or call it essentially undetectable.

Either way, I confess to having the mean reds over this outcome. I had hoped – Oh, how I had hoped! – to be no evidence of disease: to be two years’ NED as I approach the seventh anniversary of my diagnosis, that would have been huge to me. Still, I can’t call it ‘bad’ news, because it certainly could have been (much) worse. ‘Borderline’ thus seems to me to be the appropriate label, the descriptor that, for now, best applies. Not really good, not really bad; neither here nor there but on the border between. So we’ll check me again in July to see what’s more, and then we’ll proceed as necessary.

“Thrilled to hear u are still celebrating,” daughter Stephanie texted in response to my PSA news. “Enjoy life!”

Image

Survivor

Press Card

Press Card

As a cub reporter at The Washington Post, I wrote my share of obituaries, and, back then, The Post required a cause-of-death in every obit. “He died of cancer,” a family member would sometimes offer, “but we don’t want that in the newspaper.”

And more than once, after I explained The Post’s policy, families preferred there be no obituary — nothing at all — over a mention of cancer. Better to let a cancer victim’s passing go un-noted than to have the scarlet C sewn to the legacy of a loved one.

That was the late ‘60s, early ‘70s. Today, of course, we’re wearing wristbands color-keyed to specific cancers: blue for prostate, pink for breast, yellow for Lance and living strong. We blog about our cancers, we wear ribbons and t-shirts in solidarity. We’re activists who lobby and go to public hearings to argue our cause. We walk and swim and run and bike on behalf of cancer friends and family.

Ashamed no more: Cancer’s been outed.

And we’re no longer victims; we’re now “survivors.” That’s what we cancerians used to be called: victims. Yes, those were the days when cancer was a death sentence, and a shameful one to boot. (I’ve certainly never thought of myself as a cancer victim any more than I consider myself a victim of right-handedness. It’s just a fact.)

In the argot of cancer, “survivor” is neither a definitive nor a conclusive term: It doesn’t mean you’ve won, doesn’t imply you’re cured, and certainly doesn’t announce that you once — past tense, here — had cancer. Survivor, in fact, applies to all cancerians, every one of us, from the beginning point of diagnosis to the end point of death. Standing tall or standing small, with cancer, you’re officially a survivor.

Survivor is a term, therefore, of such length and breadth that it cannot possibly posses any meaningfully descriptive depth: It’s just spread too thin. It is, quite simply put, merely the anointed successor to victim. But many cancerians question the use of “survivor” and object to it (sometimes fervently so), while others simply reject it outright. I have to admit I’ve been taken aback by how rigidly some people feel about this business of how we describe ourselves (survivor, warrior, fighter) and the cancer experience (slog, journey, process, battle, dance).

Truth be told, I’ve rarely used the term “survivor” to describe myself — or any other cancerian. To me, it’s always had a hokey, politically correct vibe to it. Ergo, my term “cancerian,” a (hopefully) deft side-step of not only victimhood but also survivorship.

So it’s odd that, today, I somehow have this sensation, in the seventh year of my cancer journey, of being a…cancer…survivor. Why?

For one, and for the nonce, I’m not now a “patient”; I’m not undergoing any treatment for my Stage 4 prostate cancer. No pills, no shots, no infusions, no radiation, no chemo, and the last milligram of hormone therapy washed out of me well more than a year ago. In fact, my quarterly check-up today came back as no evidence of disease (NED). For those keeping track (and I most certainly am), this marks 18 months of NED.

So I’m now living in an interlude I call “between treatments.” Because of the cancer found in my lymph nodes at surgery, it’s highly likely (inevitable, even?) there’ll be recurrence and more treatments at some point in my future.

And that’s why calling myself a cancer survivor seems deceptively — OK, I’ll say it: early, premature, even presumptuous.

But cancer, as I’ve noted, is not just a physical disease but also a mental one. We cancerians know the coiling of the nerves brought on by a looming test; we feel the visceral gnaw of what dark truth those tests might reveal; and we all can visualize the sword of recurrence dangling above us.

“I don’t think we’re ever really cured of cancer,” I’ve heard more than one cancerian say, “because you always have the fear it’ll come back.” Or as my lymphoma blog-friend Jennifer put it: “We are always emotionally a little bit in that oncology waiting room, no matter what our [cancer] status.”

Maybe, then, being a survivor is not about outrunning the physical disease we have but about all the attendant, cancer-related fears we harbor, treatments we endure and side effects we bear — however long, however brief that time between those end points of diagnosis and death.

I’m living through — I’m surviving — the cancer experience.

S.R.O.

Monday at the Cancer Clinic—I’ve never experienced so much cancer on display, never witnessed so many visible signs of it.

It starts in the parking garage at Seattle Cancer Care Alliance. I am in space D353, and the couple in D352 walk with me to the elevators. She is chemo-bald. Straight to the lab services waiting room we three go, I for my quarterly blood draw.

While waiting to be called, I notice another chemo-bald woman, and then another, and still another. Highly unusual. So I begin surveying the crowded waiting area — it’s standing room only (“I’ve never seen it this busy,” one regular declares) — and start counting the women without hair: five, six, seven, eight, nine…I’m distracted by four people sharing their stories of stem cell transplants…”he’s 59 days out and, see, his hair’s growing back”…10. Finally, number 11 takes her place in the queue for check-in.

Behind 11 is a young boy, probably about 10 years old, in a wheelchair. His father is reviewing the day’s schedule of appointments; it spills across two pages. The boy’s pre-pubescent alto voice, loud with excitement, abruptly calls hello! to the phlebotomists. They return the greeting; they’re all — and how many appointments does this take? — on a first-name basis. The obvious glee among them torques a round of laughter from the serious and silent rest of us.

My turn. My blood is drawn so quickly (or my mind is so elsewhere), it is over before I even sense the prick of the needle’s entry into the crook of my right arm. As I leave for the quarterly appointment with my oncologist, chemo-bald woman number — no, wait, I can’t count this person as woman #12: This person is so young, so hairless, I can, on passing, discern no identifiers of gender.

I’m in a snow globe of despair, but instead of flakes, it’s cancer swirling around me.

***

Upstairs, two weeks into the seventh year of my cancer journey, I report for my check-up; my PSA is once again undetectable. I remain no evidence of disease (NED). But my oncologist and I talk not about a cure but about how much longer I can go before my prostate cancer comes back. (I did, after all, have cancer in two lymph nodes at surgery.) He tosses out markers: another year, three years, five, and why each increment is better than the previous.

It was a hopeful discussion about an uncertain and unknowable future. Very much unlike my April 2012 check-up, which brought the despairing, hollowing out news of possible recurrence. With that came a sense of futility we cancerians know all too well: No matter what I do, I can’t get a break. It’s the point in your disease where you think you’ve hit bottom, and then someone shows you to a door leading down.

But today, my oncologist — who cautioned me a year ago not to read too much into those disappointing test results — actually sees me as NED since January of last year: Despite the scant and receding traces of PSA measured in April and July of 2012, I’m 15 months no evidence of disease.

From despair to hope — what a difference a year makes.

***

My visits to the cancer ward tend to be emotionally uneventful, but this time, I knew both despair and hope, raw and in full measure: despair that so many lives are marked by cancer; but hope that the wizardry of modern medicine can, if not save, at least meaningfully extend our lives. And that is why we were all there on the morning of Monday, April 8, 2013.

Each of us had an appointment with the doctors of hope, standing room only.