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Speaking of Cancer…

cel·​e·​brate

v. to observe a notable occasion with festivities

I never look to celebrate the anniversary of my prostate cancer diagnosis, not at all.

I’ve never seen it as notable, never seen it as an occasion worthy of any festivities. It’s more like something to pretend doesn’t exist, to just…elide over.

And I’d never — never — celebrate today, the day of my ‘second’ diagnosis, the one where I learned they had discovered a lifetime’s worth of cancer in my tissues sampled at surgery: There was cancer hiding in my lymph nodes, two of them. “In the lymph nodes” had long struck me as medical-ese for “uh-oh.” 

That was 14 years ago today, the dawning days of my cancer, days saturated with hopeful disbelief but mostly denial…and questions, many questions. After all, I hadn’t even glanced at the chapter in the book I had bought, the chapter titled, “Advanced Prostate Cancer.” It just wasn’t intended for me. Except now here it was, a defining part of me from here to eternity: I owned a case of advanced prostate cancer as cancer had extended its reach into my lymph nodes. 

Uh-oh.

One of the first things I learned about having cancer is that we all handle it differently, be it my way, your way or some other way. There’s no one way to do it, no Right Way. Better to just explain your decisions, why you did what you did, and not prescribe what you think someone else should do. 

So let me tell you what I decided after I was informed of pathology’s hostile findings. Not what you should do, how you should handle your nasty case of cancer. Just what I decided to do to inform my looming and long pilgrimage with cancer: I’d seek to learn about cancer intimately; I’d hang out with the fellow cancerians I had joined; and I’d bear witness to scenes I’d never, ever see if I hadn’t been tagged with cancer. 

Cancer would take from me, that can’t be skirted. But I would take something from cancer.

Oh, not that there wouldn’t be those eager to tell me what I should do. What food I should eat, or not eat. What I should do to counter my cancer, or not do. What supplement(s) I should take, or not take. Et cetera, et cetera. And usually this advice, however well intentioned — and it was always well intentioned – came from those who did not have, perhaps never had, cancer, and never been summoned to make a life-or-death decision of what to do about their cancer, to live longer, or not.

(If you just can’t resist speaking your mind to a cancerian about their diagnosis, please first read Comfort In, Dump Out, above.)

There was my friend, saddled with a mean case of breast cancer, who decided to do whatever her oncologist suggested – radiation, chemo, whatever — at each milepost of her cancer journey and to show her cancer it would not have a free ride: “I told myself that at each stage of my cancer, I’d do whatever I could,” she said. And she wanted to send a message to her cancer, personified: “You give me any trouble, I’ll come after you.”

And there was the 37-year-old woman, diagnosed with cervical cancer, concerned about the toll of chemo and radiation treatment’s side effects on her marriage — her very quality of life. “Mom,” the young woman plaintively explained, “I was just married three weeks ago! How can I do that?” She chose to pass on radiation and chemo, the standard of care, in favor of a popular but ancient and natural therapy from a distant land. 

Neither woman possessed the prescience of knowing what her outcome would be, even whether her decision would matter, in any way, to the outcome. They were two women, taking two approaches to cancer, but sharing one common reality: Each would live, or not, with her decision, a choice made amid the fog of what an unknowable future would bring. And no mulligans allowed. 

I hope you never get the chance to show you’ll do it ‘better.’

In This, My Eleventh Year

“You should write something,” she said, “like, ‘I’m still here.’”

As in, I’m still alive.

It’s my 11th year now – 10 years and counting – since they found cancer in my pelvic lymph nodes. In this decade of the ups and downs of cancer, I find that I pass milestones less frequently, my self-discoveries strike increasingly sporadically, the observations at the cancer clinic dawn less often. Yet one thing remains all too consistent: the disappearance of a fellow cancerian, never mind the precise genus of cancer, into the vanishing point of memory. What was her name? Celeste? Yes, that’s it. Celeste.

My cancer journey has been long enough now to ignite a singular light, which could even serve as a True North, of a sort, for almost every cancerian: the beacon of hope. There’s always hope. But reasonable hope, to be sure. Not faux hope that’s wishful, or fantastical, or even pie-in-the-sky. And certainly not the crossed fingers that put some cancerians on life support in the ersatz hope that something unknown today may, out of the clear blue, abruptly announce an arrival tomorrow, and, voilà – we’ll all be cured!

No, reasonable hope approaches in steps, incrementally, their tracks to be read for a saving grace. Since my diagnosis on March 26, 2007, seven new drugs for prostate cancer have jumped the hoops of federal approval. Seven, in large measure the product of Mike Milken and the Prostate Cancer Foundation he founded.

Thank you, Mike; thank you, PCF.

Which brings me to my most recent six-month check-up. PSA – you can argue the pros and cons of PSA as a screening and diagnostic tool – nonetheless remains the gold standard for monitoring a contest with prostate cancer, and the lower your PSA number, the better. And my PSA, on an early Wednesday morning in May, was a negligible 0.08 ng/mL. That was up a trifling 0.01 over the past six months. Heck, the rise may even be within some margin of error, or the result of rounding or…or…

0.08. Ten years in. Not bad, considering that my surgeon, after reading the pathologist’s post-surgery findings to me, advised me that he had another patient just like me, a patient with cancer in his lymph nodes, who was still alive six years after surgery. All this news stunned me – my cancerous lymph nodes, the metastatic march of my cancer, another’s ephemeral six years of survival –  it all sounded to me, and there are no words to cushion this for a soft-landing, like some sort of indeterminate death sentence.

Which is not to say that I’ve beat cancer, or that some oncologic god has called, “Olly olly in come free!” No, just that, for the nonce, I’m holding my own in Stage 4-land (there is no Stage 5). Holding my own as doctors continue their search for an eighth, a ninth, even a tenth drug. Holding my own as they experiment with the optimal timing and/or combinations of these new drugs: When do you get the best results with X? Should Y drug be administered in concert with Z drug? Should an old drug be retrieved from the shelf and used in a new way?

Someday – hopefully soon – we should know the answers to these questions, know what is today unknown. Reasonable hope, yes; but the question still hovers above all: when?

Meantime, I’m still here.

 

 

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.

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    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

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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!”

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