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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.

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.