'Life is how the time goes by'

Sue Russell (right) is greeted by friends after her cabaret performance at the Ethical Society on Rittenhouse Square in July. "Going last is a slot of honor. And afterward, the audience applauds and hoots. I imagine my far-flung cancer family clapping too as I take my bows."
Sue Russell (right) is greeted by friends after her cabaret performance at the Ethical Society on Rittenhouse Square in July. "Going last is a slot of honor. And afterward, the audience applauds and hoots. I imagine my far-flung cancer family clapping too as I take my bows." (ELIZABETH ROBERTSON / Staff Photographer)

Sue Russell has rare ocular melanoma. Her life is scans and trials, tears and fear. It's also precious online friends, and a lusty cabaret song.

Posted: August 31, 2014

So far, it is a typical workday. I sit in my office at Chestnut and Seventh on the 15th floor, looking out at the barges on the Delaware River, hoping to finish a few tasks before lunch.

My cellphone rings, and it's a return call from the nurse at Jefferson University Hospital. I can tell from her tone that the news is not good.

My cancer, a type of melanoma that affects the eye rather than the skin, seems to have spread from my eye to my liver. A biopsy later confirms it.

My job is at the American Association for Cancer Research, where, as a nonscientist, I help edit medical journals. Cancer is now my business, in more ways than one.

Suddenly it is no longer a typical day. I put my head on my desk. I cry a bit. I call my significant other to give her the news. She works out of state, which makes things harder. I decide to go home and, in a daze, head for the train at Market East.

I do not immediately post the news on the Facebook page of the ocular melanoma support group. But word dribbles out when I start helping others in the same situation. And then I start hearing from dozens of people: flurries of "I'm sorry," "Keep fighting," and "Praying the trial kicks its booty."

Years ago, I would have been nearly alone with this diagnosis. Only one in six million people have my rare form of cancer, a melanoma of the eye.

But because of the Internet, I have a virtual posse, 800 strong, across the globe. And because Philadelphia is the center of research and care for this rare cancer, my friends come to town a lot.

I am fighting for my life, and that is terrifying. But I rarely if ever feel alone, and that is worth a lot.

My online compatriots tend to pay big money for juice cleanses and coffee enemas, and post links about astonishing results with cannabis oil. They are partial to rainbows, teddy bears, and prayers, and I want to say, "Oy, enough with the prayers," which to me, as a Jew, feel alien. And yet, they are some of the best and bravest people I've ever known. They come from Tennessee and Texas, from Brisbane, Australia, and Birmingham, England. We are a family forged on Facebook by the rare cancer we share.

Online, we talk about "scanxiety." We hope for NED, or "no evident disease," from our regularly scheduled imaging. We post with "yippee" or a smiley face when we are NED. For two years plus a few months, I had been NED. Now, it's goodbye NED, and hello METS, short for metastasis.

Our cancer is called ocular, or uveal, melanoma. If you imagine the eye as a club sandwich, the uvea is the middle layer, underneath the white part. When I was diagnosed in April 2012, my tumor was about the size of a penny, which made it medium to large.

My treatment was direct radiation delivered via a metal disk with radioactive seeds, called a plaque. The plaque is placed over the affected eye, where it stays for several days.

When the disk was inserted, the surgeon extracted tissue from the tumor to assess my risk of metastasis. DNA from the sample would show if I have the genetic irregularities linked to a high risk of the cancer's spreading.

I learned in September 2012 that I was at high risk of metastasis: I had a 50 to 70 percent risk over the next two to five years.

This summer, I learned that the cancer had spread to my liver, which marked the beginning of metastasis. This means I have two, maybe three years to live from the present. This timeline parallels what I've seen among my Facebook friends with METS.

Still, we are people, not numbers. One online friend has lived as long as 11 years with METS. And it's possible that a breakthrough could change the landscape.

For one night, with this news in my head, I am singing a new song as if my life depended on it, and maybe it does:

Life is what you do While you're waiting to die Life is how the time goes by.

This is the opening for "Life Is," from Zorba the musical. It has the feel of a lusty Greek folk dance, with a tempo that quickens as the song goes on. It builds to a climax, "Life is what you feel till you can't feel at all/Life is where you fly and fall."

I am the seventh and last singer in a cabaret showcase held at the Ethical Society on Rittenhouse Square. I got into the local cabaret scene when I turned 50. I am now 58, and still at it.

Going last is a slot of honor. And afterward, the audience applauds and hoots. I imagine my far-flung cancer family clapping too as I take my bows.

For the next few days, I am flying high, but I have a number of medical hurdles to face. The next day, I get scans of my brain, pelvis, chest, and abdomen to make sure the cancer has not spread beyond the liver. This is required for the immune therapy clinical trial I hope to enter. (These scans found no new growth.)

I need something to look forward to after a long day of CTs and MRIs, so I call Ande Glasmacher, a friend from the online support group, who I know is in town from DeWitt, Mich., for care. I invite her to join me for dinner that night. She is up for it. Two other non-cancer friends join us.

For Ande, it has been just over two years since her metastasis was first revealed. Her cancer has now spread beyond the liver, most recently to one of her ovaries.

You would never know this from looking at her. She is here for the first treatment in a new trial with the oncologist we share, Takami Sato, at Jefferson.

Ande has a doctorate in physics and three young daughters, and plays old-timey fiddle music. She is one of the many people who come to Philadelphia from all over the world to be treated by Sato and by physicians Jerry and Carol Shields at Wills Eye. Philadelphia is the nexus for treating this type of cancer, and I am lucky to live here and not need to travel very far.

We meet at Stella Rossa, at 10th and Walnut, a block from Jefferson Outpatient Imaging. My imaging session runs long, and I rush up the stairs and find my friends.

Even after this afternoon's barium smoothie for a CT of the pelvis, I am surprised to find I am hungry.

There is much laughter over pasta and pizza, and for me a baby carafe of red wine. Quietly, on our side of the booth, Ande and I compare notes on our prospects for prolonged survival.

Both of us are taking a chance on experimental treatments aimed at boosting our immune response.

Our drugs have matching acronyms familiar to me from my day job: anti-PD1 for Ande and anti-PDL1 for me. "PDL" stands for "programmed death ligand," and "PD" for "programmed death."

We plan to put up a good fight and to keep in touch.

A week later I show up at Jefferson's infusion center for my first treatment in the clinical trial.

A crowd hovers around me, checking my vital signs, placing the IV in one arm and finding a good vein to draw blood from the other.

I am not scared, but this is a lot to take in. And then a familiar woman takes the seat across from me and says, "Hi Sue." She's my online buddy, Cheryl Gehrer, from O'Fallon, Ill., here for treatment, and she's an old hand at this. I know I will be OK.


ssuerose@aol.com.

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