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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.

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.

The Writing on the Wall

The Writing on the Wall

The Writing on the Wall

I went to my first prostate cancer gathering four years ago, in Portland, Oregon, when I was fresh off surgery and unexpected news from pathology was still ringing in my ears: cancer in two lymph nodes. Entering the building, registering, and being handed my conference materials — I felt like a draftee reporting for induction into an army of conscripts.

That gathering was the 7th Annual Pacific Northwest Prostate Cancer Conference, and yesterday was the 11th, the fifth in my attendance streak. With time, I’ve come to value these get-togethers as important connections to my cancer community, as well as recurrent reminders that I am not alone. I’m always energized by my fellow cancerians, knowing the challenges and the struggles all face and seeing the strength and courage they display.

I must admit, however, that I’ve sometimes felt that much of the discussion was intended for others, not me. At the 8th conference, for example, on Sep 27, 2008, I scratched this fragment in my notebook: “Pelvic Lymph Node IMRT + Rad treat of p bed.” I just didn’t pay enough attention to take further notes of elaboration, what it all meant and why the topic was in play. It just didn’t apply to me and never would.

Today, of course, that’s exactly where my cancer journey has taken me, to that prescient scrawl — that writing on the wall — and I’m now 24 treatments into Intensity Modulated Radiation Therapy of the pelvic lymph nodes and prostate bed.

Importantly, these gatherings also provide key updates on advances in the treatment of prostate cancer. In the past 18 months, for example, there’ve been four new life-extending drugs brought to market for men with metastatic disease that’s resistant to traditional therapies. And more are on the way. What is probably next, Radium 223, is on a fast-track for approval, if all goes well, in late 2012, early 2013.

But can the track ever be fast enough when a disease causes 34,000 deaths a year?

“Why wait for tests, people gonna die in a year?” one frustrated guy asked, somewhat angrily, at the 2008 conference. He was specifically anxious for abiraterone, a drug for well advanced, metastatic prostate cancer that the FDA eventually did approve…two and one-half years later.

That man, that guy in the back row urgently hoping for help — I can only wonder whether he was still alive when hope finally became help.

Quoth the Raven

She came into the room on a walker, the 80-year-old woman with bladder cancer, and she sat next to me during a presentation at the Seattle Cancer Care Alliance. And at one point in the discussion, she spoke: “Cancer’s not the end of life. It may be a journey to the end of life, but it’s not yet.” Then, just in case you missed the Attitude, she added: “I’m a fighter. I won’t let it get me down.” Nevermore.