Tag Archives: Cancer

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.

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

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.