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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.

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?”

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.

Heck Cancer

Jan7PSAIt happened again, this time at the gym.

Karen inquired, sincerely — not one of those ducks and drakes how-ya-doin’s — about my health, about how things are going for me, and it was with some reluctance that I confided that my October cancer check-up was “as good as it gets”: no evidence of disease. She expressed her genuine delight for me, waved and was off with the usual bounce in her athletic step, her work-out over.

But as I remained to trod the treadmill, I once again had that old frisson of fear over saying (or even hinting at or thinking about or hoping for) words like “as good as it gets.” Am I tempting, even challenging, the fates? Am I putting a hex on myself — rank Indulgence to be smacked down by deserved Comeuppance? I’m really not (too) superstitious, but I guess I’m wary of the vengeance of retributive fates: “Oh, you think you’re doing well? Take this!”

Cancer likes to do that to you, likes to keep you from experiencing joy because it always has another proverbial shoe at the ready. How dare I luxuriate in the good when, for all I know, the bad is but one test result away?

And that’s when I have to tell myself to just let go, to sow reticence to the wind and say: Heck cancer. Just heck it.

When you’re no-evidence-of-disease, enjoy it for all that it’s worth. It is a princely sum and one hard-earned.

When a treatment ends, have a glass of champagne — another bodily insult is over, no matter that you don’t yet know whether it did you any good. You endured.

And when a treatment’s side effects finally abate, celebrate. Despite the seeming inevitability of what my friend Patricia calls “late effects,” mark every moment of your passage from perdition.

They say that cancerians have a higher sense of nowness, of living in the moment, and this is what it means, I suppose: finding, making and taking pleasures in the here and the now. Bad news may, indeed, be but one mere test result off, but don’t go there ‘til you get there. Own this moment, however long this moment might prove to be. And heck cancer. Someone once said that living well is the best revenge.

But when you have cancer, just enjoying the life you have is the best revenge.

Waking NED, Divine!

My quarterly PSA tests have always exerted a gravitational pull on me well beyond their intrinsic strength. That’s because they tell me how well I’m doing in fending off my Stage 4 prostate cancer. Call them my report cards. And yesterday’s test had no more, no less gravity than any of the 22 other PSA tests I’ve had since surgery.

But the results, so patently unexpected, took me with such surprise that my reaction sounded, even to me at the time, more like a shrill complaint than an outburst of innocent incredulity. “What?” I said. “Can that be right?”

Indeed it was. My PSA was “undetectable.” And that’s good.

PSA is a biochemical indicator of prostate cancer, so whatever PSA there might be in me, it’s an amount so scant, so negligible that it just doesn’t show up in the test (my lab can detect only 0.03 ng/ml or more of PSA). And this “undetectable” was down from July’s reading of 0.03, which was itself down from April’s 0.04. And the lower the number, the better.

So what to make of it?

As we say in the cancer community, I am — at least for now — NED, no evidence of disease. You can poke me, you can scan me, and you’ll find not a farthing of evidence of prostate cancer.

We hurriedly improvised at dinner: cheap champagne that was on hand in the fridge.

True enough, I’ve been down this “undetectable” path before, only to see my PSA return and signify cancer’s recurrence. So while we toasted this one test result, I’m taking no victory lap, flying no checkered flag; the race is not yet run. At surgery in 2007, remember, pathology found cancer in two of my pelvic lymph nodes; my cancer metastasized long ago, and it’s virtually certain that some cancer still remains somewhere within me.

Or as my oncologist once told me: “We’re not trying to cure your cancer; we’re trying to manage it.”

“Undetectable,” though, is as good as “managing it” can get, and I’ll take it — gladly — even though I can’t say how, exactly, it might speak to the longer term. The only thing certain is that we’ll test again in January.

And as any cancerian can tell you, the most important test is always your next one.

Keeping Abreast of Cancer

Virginia Mason Medical Center

Cancer is a disease of the body, but it also afflicts the mind.

In the body, it grows at the expense of normal cells, healthy tissues and functioning organs. From the mind, it steals. Steals security, normality and a presumed sense of well being. I’m not alone among cancerians when any random ache, any inexplicable pain or any unanticipated discomfort provokes the questions: “Is that my cancer?” “Is it spreading?”

Prick a cancer patient and she or he can bleed bright, red fear.

I’ve had this painful-to-the-touch growth behind my left nipple. I first noticed it on July 24, after I had checked into the Beijing Hilton. With time, it got not better but more sensitive to the touch, and it grew noticeably. Since it had begun with a skin eruption, I waited to ask my dermatologist about it at my regular, annual skin-cancer exam. She wasted not a nanosecond in queuing me up for a closer look, Friday.

In the time leading up to my Friday appointment, I rode an emotional carousel of painted horses, up and down. White horses of hope up: It isn’t male breast cancer. And black horses of fear down: It is male breast cancer — and this is the horse I rode most of the time.

It was eerie for me to be in the Virginia Mason Medical Center breast clinic for my mammograms. Left and right, vertical and diagonal. A slip of the tongue telegraphed my dark state-of-mind to nurse Kim: “This is my first mastectomy.” No: first mam-mo-gram. So afterwards, Kim, a lovely and loving nurse, took me quietly to the ante-room to whisper the diagnosis to me in private: Not breast cancer. Instead, I have a side-effect of my hormone therapy: gynecomastia.

I’m growing a left boob.