Archive | Commentary RSS feed for this section

Living with Cancer

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. 

Those words came back to me today, fully 10 years after I first posted them. This time, I was marking 15 years, not five, of living with cancer — they had, after all, unexpectedly found cancer hiding in my lymph nodes at surgery. Thus, 15 years of treatments, 15 years of periodic check-ups, and, inevitably, 15 years of fearing what those check-ups might reveal. Good news? Bad news? A mere muddle? In my 15 years, I’ve heard them all.

I know ‘scanxiety’ well, that feeling cum fear that your life can abruptly be challenged by one scan, one blood draw, at one appointment, on one day. That all your effort, all your diligence, all your sacrifices will be for…naught. Will it be today? It’s real, scanxiety is, and too many non-cancerians don’t fully appreciate that. It’s like chemo-brain: No one ‘gets’ it until they’ve got it.

But…

But there’s really no alternative, is there? 

There’s no real choice with cancer, when you’re living with cancer. Check-up scanxiety? Just one more of life’s impositions: Like growing old, it beats the alternative. 

So another toast: Here’s to 15 more!

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.

 

 

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.

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.

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.

What’s wrong with me(n)?

Until July 24

Since poking my head up into the cancer blogosphere, I’ve been looking about a bit, reading blog posts here, there and everywhere. It’s been a grim revelation to see and hear the emotional pain that can accompany cancer.

And, I’m sorry to report, how often men are the wellspring of much of that pain.

No, I’m not saying all men. There are uncountable numbers of men out there who are loving and supportive caregivers all. You can read that in the blogosphere, too: In toting up her cancer blessings, Nicole, larynx cancer, thanked from her heart, Don, my husband — industrial strength, flawless diamond support and escort service for all my treatment needs. My indefatigable rock, he always finds a way to time his jokes when I’m not trying to swallow.

But there is a Guy Thing out there, make no mistake, and I did not set out to find it. I was merely skimming posts, literally just looking out the window while on my cancer journey. And this is what I saw:

A woman with breast cancer, metastasis to her lungs: Don’t know how I’m going to find the strength to do everything I need to do to get rid of this cancer & still work full time which is what my husband seems to think I need to do 😦

A woman with ovarian cancer, in her 40s: Facing a second recurrence, and I am terrified right now. My mother died 18 months ago, after an 11-month bout with OC. Then my father passed away nine months ago of heart failure. So I already had grief and stress in my life, plus my main source of comfort and support is gone. My former husband was not the best of support, but our marriage ended five months before my mother died. So I am crushed at the daunting prospect of going through treatment again.

Another woman with breast cancer: I’m so depressed. I don’t know if it’s my cancer, my new fake breasts, my nasty husband or just life…. I hate my new nipple-less fake breasts, they don’t feel like a part of me and my marriage has fallen apart because my husband refuses to be a part of my cancer afterlife. He won’t touch me, he hates me and wants the old me back.

A woman with stage 4 kidney cancer: My relationship fell apart because of cancer. He couldn’t come to terms with it, and I got tired of the guilt of focussing on my self.

And then I recalled the lady on a Survivor Panel, June 26, 2010, “Moving Beyond Cancer to Wellness” at the Fred Hutchinson Cancer Research Center here in Seattle. She had been diagnosed with lymphoma, I believe, and the prognosis had not been good.

“My husband came to me one day and said, ‘I’ll take care of the kids, but I can’t handle your cancer.’” She then explained that there was no way she was going to put her husband, her children and herself through the stresses and pains of divorce only to…die. However justifiable a divorce might have been, she just wasn’t going to cause a family wreck and then leave the scene. (What a classy lady, I thought then, and I think so still.)

She finished her remarks about cancer’s impact on families and then came the Q and A. Someone in the audience finally asked about the elephant in the room: “What became of your marriage?”

“When I realized I was going to live,” she answered, “we separated.”

Eighth Day of the Week

Scan my bones, Jones! (Official T-shirt of the Prostate Cancer Foundation)

Today was Scanday, the day between Wednesday and Thursday, of two CT scans and one bone scan at Seattle Cancer Care Alliance. The scans are in preparation for my almost-certain radiation treatment…depending still on a third medical opinion a week off. An uneventful, information-free Scanday.

Except for the young man, the very young man, sitting opposite me in the waiting room. In his 20s, there with his mom, drinking the same contrast solution I was, and wearing a patient i.d. wristlet like mine. One of the mind games I play in the waiting room of the cancer ward is to try to guess what kind of cancer someone has — an impossible game of no consequence whatsoever, but one that does put my senses on alert for clues and ambient conversations.

Across the aisle, May 5, 2008: Man #1: “Are you a bone-marrow transplant, too?”

Man #2, tapping his right abdomen: “Pancreatic.”

Fast forward to the young man today. I couldn’t glean enough to learn what his cancer is or what stage it’s in. I merely drank in his wristband, his mom, his presence in the cancer ward — and his raw youth: so much life ahead. Maybe. And I recalled what my dad would say when he’d hear of someone else’s straits:

“I got no problems today.”