Tag Archives: Prostate Cancer

Hope

Saturday’s program in Washington included a documentary filming of a men’s prostate cancer retreat. In the center, in the blue sweater, is our host, Trip Casscells.

As a young reporter for The Washington Post, I had many memorable times in Washington, D.C., but this past weekend (Sep 7-8) was my most special time ever in the city. I was honored (and humbled) to participate in the Milken Institute’s “Celebration of Science” as a guest of Dan Zenka and the Prostate Cancer Foundation. Dan both works for the foundation and is a prostate cancer survivor himself. With him, about 10 of us who are also making the prostate cancer journey represented all PCa survivors to a community of researchers working for better treatments — and someday a cure — for prostate cancer.

I don’t ever want to say that I’m lucky to have prostate cancer, but it has exposed me to many wonderful people and life-shaping experiences; this past weekend brought both, and for that, I am lucky — and grateful.

I’d like to share with you this link to Dan Zenka’s post about the weekend from his blog, My New York Minute.

Waiting

Image

July 16, 2012: Zometa Infusion

I’d be lying if I said I had looked forward to yesterday’s quarterly cancer check-in.

The day dawned with dread, heavy dread, born of a certain conviction that my blood test would confirm an increasing presence of PSA — and, therefore, evidence of cancer on the advance. My only jot of hope lay in how little my PSA might be up since April.

It was to be a long day, 11 hours’ worth, at Seattle Cancer Care Alliance. The medical agenda also included a follow-up with the radiation oncologist, a bone scan for osteoporosis, and, at day’s end, an osteoporosis drug infusion. With my mind focused on the PSA test, though, I took my lunch break at a nearby Irish pub, perhaps a subconscious quest for some luck o’ the Irish.

At 4:20 p.m. the PSA news came in. I had been weighed, my height taken, my blood pressure read, and I was now in exam room number G4315 — waiting for the results of the PSA test from my blood drawn in the morning. Every cancer patient will tell you of the mind churn, the anxiety, that comes with the wait for test results, however long, however brief that wait. The imagination seeks out, even creates, the darkest of cubbies to deliver you. A fellow cancerian has suggested we edit our t-shirts from Cancer Sucks to Waiting Sucks. Despite lots of practice over the past five years, I’ve still not gotten very accomplished at waiting for test results.

But then, I’ve had enough tests come back with unwanted news that maybe, by now, finally, and at long last, I’ve merely become conditioned to dread test results: I’m down, just go ahead and kick me.

Now the results were finally mine: April’s PSA reading was 0.04, and Monday’s was 0.03.

And there, in exam room number G4315, we traded celebratory high-fives.

News (If It’s Real)

Apr 23, 2012: Blood Draw

Last Monday was my quarterly check-in with the oncologist, and I had hoped that my PSA test results would come back “undetectable” — no evidence of disease. Not so. The oncologist conditioned the results with (a totally appropriate) “if it’s real.” One data point does not a trend make, especially when this particular data point is so mercurial and the amount so scant: a barely detectable PSA level of 0.04 ng/ml.

But it’s most likely real. And that’s not good because, given where I am in my cancer journey, detectable PSA can be evidence of disease. We’ll check again in three months and go from there. Stay tuned.

Assuming it’s real, though, it seems that the odds likely prevailed, and my salvage radiation probably didn’t work.

***

I’d like to detour from my cancer journey to (sadly) note the passing of a high-school classmate and friend, Sandi Sheff Bernstein. Sandi died April 14 of non-Hodgkin lymphoma after two contests with breast cancer. When I wrote on January 17 about the fear of recurrence that occupies all cancerians (A Stalking Circling Menace), I noted that for my friend, Sandi, recurrence was “the bear in the back room,” trying to get out. Her bear, unfortunately, did break free.

Sandi was both classy and courageous. When I disclosed in March 2011 that I have Stage 4 prostate cancer, Sandi re-entered my life — almost 50 years after our high school graduation.

It was worth the wait.

“[Cancer] is a good thing, in a way,” she wisely wrote upon her re-entry into my life. “It reminds me that life is on loan to me and I should use that time in a good way. I want to be seen as a giver and not a taker. I am very fortunate, I know, to have been a survivor twice. I would love to follow your journey and commend you on how you are handling it. Sending you my prayers and good wishes, try to make the journey work for you.”

Later she would tell me: “Attitude is so important. Fight that cancer. Never give up. And when you are well again, remember all you have learned along the way.”

In addition to her comments on this blog site, Sandi and I also had a year of email exchanges about our cancers, which were, really, conversations about life. She grasped that cancer can kill you, but only you can decide to quit living.

“So back to the bear in the bedroom,” she wrote with prescience — but without fear — in what would be her last email to me. “He’ll win this round. I just don’t know when. One thing I won’t let happen is let the bear win until the final round. I can live with him, side by side, but I still plan on enjoying the life I now have with family and friends. He’ll just have to settle on being in the back bedroom until my time has come. I won’t let my attitude be affected by this. It is still my life, and he can’t claim my attitude unless I let him…”

Shalom, Sandi. Shalom.

Diagnosis + 5

The diagnosis that transformed my life came five years ago today.

I was vacationing, driving east on I-10, toward Tucson, when my cell phone broke the monotony of interstate pavement. It was the urologist who had done my prostate biopsy; we had played phone tag for several days, the apparent lack of urgency giving me a confident calm. I took an exit ramp, pulled to a stop and, old newspaper reporter that I am, began taking notes.

“There’s a little bit of cancer,” he said. What?! He gave me the title of a book to read so I could ask intelligent questions about my first cancer, as well as understand his answers. No sense discussing my Gleason Score unless I knew what it measures and what it means. “Read the book, and we’ll talk Friday.”

At a Barnes & Noble in Tucson, I searched the next morning for the book but finally had to ask for help: “Do you have Dr. Patrick Walsh’s Guide to Surviving –”

The rest of the title, Prostate Cancer, never came out. I had choked, both vocally and mentally. For it was only upon uttering Surviving that I fully grasped what I had been handed: a disease with the potential to kill me.

Five years following diagnosis is a milestone in cancer survival, and while it is a good deal for me personally, it is also a Big Deal: Virtually all of us who were diagnosed with prostate cancer in 2007 have so far survived the disease, thanks to earlier diagnosis and better treatments. So much so that there’s a kerfuffle today over whether prostate cancer is over-diagnosed and over-treated. In other words, many men (most?) will die with the disease, not from it. There’s just no way yet of telling early on who needs treatment and who doesn’t.

And me? I remain grateful that I was diagnosed. Diagnosis and surgery led to the discovery that my prostate cancer had taken up residence in nearby lymph nodes, warranting more aggressive treatment and more frequent check-ups. I’ve now had an experimental drug, surgery, hormone therapy and radiation accompanied by more hormone therapy. Over-treated? Not me.

I take whatever they have to offer, whatever will help me at each turn of the cancer screw — that’s Bill Curry’s guide to surviving prostate cancer.

Here’s to the next five.

 

The New Normal

Havana Teacher

Havana Classroom, 2010

Today marked three months since my completion of salvage radiation. “Has it been three months already?” they asked me at the check-in desk in Radiation Oncology at the Seattle Cancer Care Alliance.  I was reporting for a routine, follow-up visit with my radiation oncologist to attend to any lingering side effects since radiation’s end (none to report, knock on wood). It was brief, friendly and, in retrospect, almost remarkable for its lack of any mention of cancer. In short order, I was on my way.

It wasn’t until later, at Sea-Tac International Airport, that cancer raised its head.

I’m on my way back to Cuba, and I had given this absolutely no thought until, there I was, at the tail of the security line, gazing into a queue of passengers being herded to the whole-body security scanners.

I’ve tried to follow both the science and the scandal surrounding these devices, and while, at the bottom line of the science, there may be inconclusiveness about their safety, I reacted very simply: more radiation. And I’ve now had a lifetime’s worth. An X-ray for medical purposes, I understand and accept, and even for a dental exam, I’m fine – but for this? The two words reverberated: more radiation.

A touch of urgency set in. My failure to think this through beforehand was now forcing an impulsive decision: Can I refuse? How? And what’s my alternative? What exactly had I read in the news? And on the blogs — what had my fellow cancerians warned about these scanners? Why were they banned in Europe? Why hadn’t I thought of this?

Time was up. Time to declare my intentions or proceed to more radiation. No! I told myself, and then, with conviction to the TSA officer: “I need a non-radiation alternative.” I was cautioned about the sole alternative, a physical pat down. “Fine.”

“Step over there.” And over there, starting at my collar, blue latex hands began their inquisitive journey, down my torso, front and back, around and inside my waistband, and finally down my thighs, knees, calves, shins, to my very socks, the blue hands hijacking my every sense: I remember seeing and hearing nothing of the airport around me. The TSA officer was polite, official, thorough. And I was done.

Not yet. The officer’s blue latex gloves now needed to be checked for any explosive residue gleaned from my clothing. I stood alone, my shoeless feet aligned on a yellow +. Curious travelers passed, their eyes aiming unspoken questions at me. They hurried on.

And this, I thought, is my new normal.

A Stalking, Circling Menace

Predator

I’m on my own now.

On Oct 17, I had my final three-month injection of hormone suppressant. So any day now, the side effects (hot flashes, chemo-brain and fatigue) should start ebbing, and testosterone should start flooding. The problem is, testosterone fuels the growth of prostate cancer, so now also begins the big wait-and-see, the medical equivalent of Neighborhood Watch, an anxious lookout for something to go wrong: recurrence.

A diagnosis of cancer is an ambush. Recurrence is predation in the night, a stalking, circling menace, unseen but sensed and feared — yet not fully realized until the pounce.

I’ve yet to meet a cancer survivor who doesn’t have at least a farthing of fear of recurrence. We all sense this menace, and it changes us and how we approach the very notion of time. We condition our present with a parenthetical (for now), and we hedge our future with a conditional “if all goes well.” We don’t talk of being “cured,” just that there’s “no evidence of disease.” Some survivors even animate recurrence: “the bear in the back room,” my friend Sandi calls it, waiting to break out.

These are the altars of language we kneel before to pay homage to Truth: With one routine test, our cancer circumstance can abruptly change — and with it our lives.

For prostate cancer survivors like me, it’s the PSA test that brings a slowly ratcheting anxiety, but all strains of cancer have follow-up tests or scans of their own, and all cancerians know the accompanying tension: the dread that the results will — this time — bring that feared change in circumstance. I finished my first round of hormone therapy in Oct 2009 and for nine fleeting months tested negative: no evidence of disease. But on July 12, 2010, with just five words, my cancer circumstance was abruptly changed. “Your PSA is not undetectable,” they said. PSA, a blood-marker of prostate cancer, had returned.

The predator had pounced.

Recurrence shook me. All the important things I’d been diligent about, all my strategies for pushing back, now seemed trivial, almost wasted, and I was reminded, one more time, that cancer is a disease and a metaphor for loss of control. It hadn’t mattered what I’d done. The cancer that had metastasized to my lymph nodes prior to surgery — even before diagnosis? — had endured.

A small voice within whispered, “You’re in trouble.” This was proving to be a more difficult contest with cancer than I’d foreseen, hoped or assumed. I doubled down on diet, exercise and nutrition, and I began seeing a naturopathic oncologist. I also began paying closer attention to new drugs in testing and coming to market: Which one, I muse, could someday become a vital part of my life?

Eventually, recurrence led to my recent round of salvage radiation, a one-off attempt to see if, finally, we could root out — even just suppress for a few years — the cancer that’s eluded all prior attempts. On Jan 23, I’ll have my first quarterly PSA check since radiation and, after that, quarterly tests for as far as the eye can wait-and-see: April…July…October…January. Lather, rinse, repeat.

But today, no pills, no injections, no radiation — I’m off treatment and on my own (for now).

 

Boys of Summer

Reflections: Honoring Fred Hutchinson, Manager, Cincinnati Reds

It may be the sole summer of my youth that I recall with any real clarity: the summer of ’61, that listless season after high school graduation, when Al Mosher, Bill Salzer and I spent many humid nights at Crosley Field, watching the Cincinnati Reds, under manager Fred Hutchinson, win their way to a National League pennant and a shot at the Yankees in the World Series.

The Reds, alas, would lose the Series; Al, Bill and I would choose separate life paths but not stray apart. There would be Al’s wedding, and, later, a son. There’d be clueless weekend nights with Bill over Stroh’s beer at Shipley’s, where he’d lament statistics class, and I’d talk about my work at WKRC-TV.

And then it all fell apart.

On Dec. 15, 1967, 44 years ago today, Al stepped on a “friendly” land mine in Vietnam; his widow, Sharon, called me in New York with the news, and I went down to Washington for Al’s burial at Arlington. Bill, in the Army and stationed in Okinawa, escorted Al’s body home for the funeral. The three of us were together once more, together one final time.

I never saw Bill alive again. Two years later, a captain at Ft. Hayes, he was murdered by a soldier under his command.

Two young lives brought to an end in their mid-20s, and 40-, 50-plus years of life stolen from each, years they never had the opportunity to experience, to savor and to hold dear. I often tell myself that Bill and Al would love to be my age and have my Stage 4 prostate cancer — and that puts my cancer, and my life, in perspective; keeps my head screwed on straight; and reminds me of all the blessings of life, whatever the bumps.

Today, just to close this circle, my oncologist, besides treating me in the clinic, conducts prostate cancer research — at the Fred Hutchinson Cancer Research Center here in Seattle.

And, yes, it’s named for the manager of those Cincinnati Reds, that summer of ‘61.

The Radiation Arrow

Team SCCA: Patient with radiation therapists (L to R) Tony, Jason, Lorena

My 36 radiation treatments ended today, and we marked the occasion at Seattle Cancer Care Alliance with thank-yous, good-lucks, handshakes, a hug and a team photo of patient and therapists. In the cheer of it all, I felt the sadness of separation. I was the teammate who got traded. They stay together, and I move on. I’ll miss them.

Later, there was champagne at home (thank you, Craig). It was nothing, really, you’d call a big celebration, just a marking of the occasion with a toast and some of France’s best: one more cancer therapy, now completed.

Radiation seemed to go well — if you ignore the fact that there’s no way of knowing (yet) whether it “worked.” I asked how/when we’ll know if the radiation did me any good. The answer: When

  • I’m done with hormone suppression (in January);
  • my testosterone has returned to normal (about July);
  • and I’ve no detectable PSA,

then it worked!

Translation: not any time soon.

In fact, I hope it takes years — decades, even — to know. For the longer I go without PSA, the likelier the radiation worked its magic. I don’t know if there’s an end point where someone will announce, “It worked!” It will more likely be just three months at a time as I pinball from one PSA test to the next. We should, though, get some idea over the next few years whether my PSA, and thus my cancer, are ever to come back.

(Because I’ll be making increasingly frequent, and increasingly important, references to PSA in these posts, I’ve created a petite primer on PSA and where it fits in my health care — the PSA & Me link, above, if you’re inclined).

I do remind myself that salvage radiation was never held out to me as a slam-dunk “cure.” I knew, and I know, viscerally and intellectually, that radiation was never a solid certainty — nor was it a hollow hope. It was somewhere in the scheme of possibility, but, like whack-a-mole, the greater probability is that my cancer will pop up again.

In short, I never saw radiation as the silver bullet. It was always an uncertain arrow in the oncologic quiver.

And it has now been spent.

I shot an arrow into the air;

It fell to earth I know not where.

–Longfellow