Wednesday, November 9, 2011

'An Angry Man'

The receptionist at the front desk welcomed me to the Department of Urology and apologized that the Doctor was running 15 minutes late. I took a seat among the six or seven others in the waiting room.

My visit to 'Urology' was a follow-up to a recent exam, and was to include a scope procedure for a closer look at my prostate. I was, understandably I think, less than eager to have a scope inserted into my body through a catheter but I had arrived in the office at 9:15 a.m. as requested, 15 minutes ahead of the scheduled procedure. A nurse took my vitals and asked me to return to the waiting room until the urologist arrived.

I picked up a sports magazine and began reading a piece that seemed to be lobbying for Stanford's young  quarterback to win the Heisman Trophy for the 2011 season. I was distracted by thoughts of the catheterizing process but noted the 22 year old football player's list of personal goals like improving his completion rating, winning the Heisman and leading Stanford to the 2011 national championship.

Looking up from the magazine, I thought of making a second trip to the bathroom. I had skipped my morning coffee to avoid having to 'go' during the procedure which I would have found embarrassing.

A second receptionist popped up from her desk behind the horseshoe shaped counter shouting my name like we were in an auditorium. I stood and walked to the counter noting by my watch that I had been there for about thirty minutes.

I was annoyed at the delay, which was unusual for me. I was annoyed that I had paid $13 for a taxi instead of walking to be on time for the appointment. I was annoyed (unfairly I know) at the youthful ebullience of a 22 year old quarterback planning his triumphal life. Mostly, I was annoyed to find myself waiting for another procedure, the results of which might suggest a panoply of dignity crushing events.

Like others with multiple myeloma, certain treatments had weakened me but I fought back each time and regained my strength. I realized that if the 'scope' procedure found prostate cancer all treatment options were radical and the effect would compromise my notion of manhood. I decided that I would decline any new treatment.

I stood at the end of the counter while the receptionist faced the room calling variations of my name; "Steve, Stephen, Mr., ah..." All the while the people in the waiting room pointed to me standing six feet to her left.

"I'm here," I said, which gave her a start and she hopped back a step while turning towards me. I got the sense that she was tense, like Lucy Arnez futilely struggling with chocolates moving too fast along a conveyer belt.

"Are you Stephen," she asked?

'I am,' I answered.

'OK, well the doctor is still tied up and will be for about 15 minutes, so why don't you take a seat and…'

'No,' I said.

She looked up, a bit taken back and asked, "What do you mean?" A big nurse in the background whispered too loudly that she should, 'tell him to sit down and wait!'

 I explained that I understood the doctor was busy but a second delay would make me late for another appointment.

She picked up the telephone, finger hovering above the keypad and said, "Tell me who the other doctor is, I'll explain you'll be late and it will be …"

"No," I said, 'I don't have an appointment with another doctor... I have a business meeting and I'm leaving now. I'll call to make another appointment'.

"OK," she said, and a murmuring huddle formed as the receptionist was scolded by the big nurse for letting a patient get away.

I left the building and decided to walk part of the way home. My favorite route took me by a little, red brick school, its window sashes painted in bright red and gold. The school sat next to a park the size of a city block where Moms and Dads helped little ones on the swings and the slide. A cold wind tried to find its way through my skin and around my ribs looking for my pounding heart though the rush of air felt good on my face.

My pace quickened as I passed the leaf strewn park to my right, and on my left, across the narrow street, old Victorian houses that had been broken up and sold as condominiums. A slow burning anger was unravelling from within like a giant python releasing its suffocating grip. I began to shake, lightly at first but then violently until my legs stopped working and I had to grab onto the back of a park bench, gripping with all my strength to steady my hands.

I gritted my teeth at the momentary pain and felt tears form in my eyes. I turned to hide my face from those hurrying by me on the sidewalk.

"Probably the wind," I told myself.

I stood up straight as the shaking eased and stared out to the grass, yet green, around a little baseball diamond, and thought of the young Stanford quarterback, Andrew Luck.

"I hope you take the Heisman, Luck!" I said out loud, though there was no one to hear me.

Sunday, April 24, 2011

Waiting For That Other Shoe...

When I was told I had cancer life froze in that moment. My face set in a polite smile and my eyes focused on the neatly knotted, blue, bow tie with tiny, red polka dots worn by the bright young Doctor as he spoke the words in measured tone.

"I'm not sure what they told you after the surgery, [to remove a tumor, plasmacytoma, from my chest], but you do have cancer."

The doctor and nurses who sat with me that morning, seemed impressed at my unshaken composure.  Then again, they had witnessed this act before.

Hearing the news was a body blow, like receiving a concussion without losing consciousness. I knew what the words meant: "multiple myeloma; blood cancer; extending survival rates; pray for remission; there is no cure".

Riding through a high tech car wash recently, reminded me of that day.  A violent storm driving water, chemicals, huge brushes and jet engine like fans, beating hell on the car's exterior as I floated through in the dry, quiet solitude within. 

The incremental progression of MM is unsatisfying. Is that the word? We know that MM progresses inevitably to death, but with unpredictable pacing. Unpredictable sounds strange I'm sure to the uninitiated but it feels right to me. The old stats had the average survival rate at five years. Actually, that may have been the median rate rather than the mean, but either way, new protocols and combination drug therapies have moved the numbers up the curve.

I use the word unsatisfying because the disease bursts like a surprise tornado into furious activity, requiring massive retaliation by the oncology team, and then goes quiet.  In my case, a plasmacytoma (tumor) was removed from my chest in January of 2003, followed by six weeks of radiation in April. Five months later I was well enough that I rode my new Lemond Road bike in the 192 mile Pan Mass Challenge.

 I have ridden four or five times since, in between ambushes by the MM cells that hide like bandits in tiny ravines, and dead end canyons throughout my bone marrow.

The late Reverend Peter Gomes said,"Faith is the conviction that hope works."I have faith that if I and 'my' oncology team could get one-on-one with this beast, we would win. Instead we go from skirmish to skirmish, fighting against a guerrilla force that chooses the time, place and virulence that satisfies its design.

 So I vent.  Yet, on each monthly clinic visit, or when visiting sites like "MM for Dummies," I see and read of others dealing with serious ramifications of a more violent class of MM. In particular, the growing number of young people fighting this cancer, once nearly exclusively a disease of the elderly.

I'm thankful that I am relatively active at 62 and grateful for the dynamic brilliance of the Dana Farber Oncology folks who have succeeded time and again in driving my disease into dormancy.  My admiration and respect for fellow travelers, especially the young, like Paula the knitter and Phil the kicker, who live with much more courage than should be required at their ages, knows no bounds.

Again, I apologize for venting when I have much to be grateful for. Still, I can't help but pray for that other shoe to drop so I can take this fight to the final decision, one way or another. 

Sunday, March 27, 2011

Geraldine Ferraro - Warrior Princess

It remains striking to recall, (despite lacking the technological advancements that allow today's spin masters to penetrate all levels of public attention like a deadly virus through a semipermeable membrane), the agility of the monstrous political spin machine, reversing field and cutting back to focus its death rays on the first female interloper in the exclusively male preserve of presidential politics. It's clear that Geraldine Ferraro anticipated major opposition to her historic nomination as the first woman vice presidential candidate and running mate of Walter Mondale in 1984. What she got was a massive retaliatory strike by the opposition and the flaccid support of the Democratic Party, weak kneed at the prospect of fundamental change.

Ms. Ferraro faced challenges from the start, being raised by a single mom after her father's death, but attained the highest levels of success by virtue of her intelligence, perseverance, generosity and optimism. When multiple myeloma crashed into her world in 1998, that too she wrestled to the ground and on a daily basis fought it to a draw, absorbing the physical pain, the fearful psychological trauma, refusing to allow the deadly disease to alter the purpose of her life.

I was diagnosed with multiple myeloma in 2002 and I owe my extra years of continued good health to the Doctors and Nurses and Researchers of the Dana Farber Cancer Institute in Boston. But the spirit to stand tall and ferociously fight through, over, and around the black beast of cancer, to focus on the bright colors, the overwhelming beauty and joy of life was a gift from Geraldine Ferraro.

I am stunned at the loss of this bright light. Geraldine Ferraro rode stoically at the front blazing a path that many of us followed and as I continue across the treacherous fields, slowing to honor her still form, wanting to stop, to stay and draw strength from her resting soul, I stumble in sadness at the loss of this grand woman.