Saturday, June 2, 2012

Sally Chapman July 28, 1946 - June 2, 2012

In Sallys second blog post (Who to Tell and When, September 22, 2011), our brilliant sister laid out the discernment process that led to this blog. A big step, she called it, for an otherwise pretty guarded person. Her reasoning was characteristically clear, fundamentally generous.
The blog would be about choicehers and ours. She would use it to clarify her thinking. She would open it to all. She wished not to foist her illness on others, not to be a whiner. But she wanted to watch, to listen, to think, to learn. That was how she would thread her way through a terrifying thicket of questions. She would remain the scientist. She would find her own answers.
In doing so, of course, she gave us each the gift of insight into our own questions, whether pressing upon us now, or as yet unformed. It has been said that communities emerge when people start asking each other, What are you going through? Our shared concern for Sally and what she was going through brought us into a common awareness of how profoundly her suffering was affecting all of us all who knew and admired her, all who had been touched by her, learned from her, laughed with her.
Many of you told Sally how much you appreciated her decision to go public, how grateful you were for the privilege of seeing the alien world of grave illness through the lens of her keen observation, her intelligence, her self-containment. Many commented on how much they admired her honesty and courage. And she would say in private, genuinely puzzled, What else would I do? Go to pieces? Fall apart? What purpose would that serve?
In the final days of this awful cancer Journey we three siblings Bill, Diana and Muff -- joined Helene, Sallys dear friend and constant companion, in a bedside vigil, drawing from Sallys spirit and her extraordinary example of what it truly means to keep calm and carry on.
It was then that we decided we owed what she jokingly called her public the courtesy of a closing chapter to this ten-month narrative. Later we can gather at Pocono this summer and at Barnard in the fall to share our Sally stories and celebrate her life. This is simply the coda to the cancer Journey blog, picking up from May 17 when she left MSKCC for the last time.
First, a new metaphor. For a while Sally wrote of bumps in the road. Later they became a roller coaster ride. But as we look back now, the image that comes to mind is an unpaved road on which we used to test our mettle as kids at PLP. It was gravel and dirt, badly eroded, rutted with holes and loose rocks and a raised crown that threw you off to the sides. It led plumb down a steep incline into the Tobyhanna River flowing out of Pocono Lake.
This mess of a road was the vestige of the run-up to a bridge that had crossed the river before a hurricane took out the old dam in the 1950s. Beside it, and traversing it, was another dirt road that offered a gentler descent. That one we kids called Safety First. The steep one was Safety Last and we dared each other to take off down it on our bikes in the spring and fall, on sleds and skis in winter. 
Sally was always the smart one among the four of us. She knew better than to mess with Safety Last. Thats what makes it so ironic that from the day she drove back from the Preserve -- July 18, 2011 -- for the first of the series of medical encounters chronicled in this blog, she was barreling down Safety Last toward a dark and raging river.
In the early sequence of consultations -- with the internist, the surgeon, the oncologists -- the news was bad, then worse, then worse still, until it was as close to hopeless as doctors allow themselves to reveal. Bill listened. Diana took notes. Sally took it in. All of it. She made her own choices about how to balance the desire to know against the desire to hope. The erosion of hope was one of the most painful parts of this ride.
And the physical pain unbearable, intractable pain excruciating to all who watched, including the phalanx of professionals in the pain and palliative care service who were doing their all to quell it. Here again, as so often in Sallys complicated case, the house of medicine was divided. During the penultimate hospitalization the purveyors of drugs (better living through chemistry?) were pulling out all their stops and wanted the interventionists to try a celiac plexus pain block (we did look it up). Ultimately they declared it too risky, dashing another hope.
But on Wednesday, May 17, as you read in the latest post, the interventionists finally undertook the pain block late in the afternoon. By the next morning it was clear that the procedure had surpassed everyones expectations and would liberate Sally from the hospital at last, eager, as she wrote, to get moving and build up some strength.
Even that modest ambition quickly revealed itself another unattainable hope. Just managing the schedule of pills and the transition to in-home hospice care consumed all the energy she could summon. But the partial pain relief did, at least, clear a small space for Sally to accomplish a few goals.
Earlier in the month, we three had begun to establish an endowed fund at Barnard in Sallys honor, following her lead in designing the program that would be most meaningful to her. The Sally Chapman Fund will enable the Chair of Chemistry to compensate faculty who, on their own time, are engaging students in laboratory research, work that science faculty are expected to do and can be paid to do if they can secure increasingly scarce government grants that cover summer salary. Sally called this work an unfunded mandate and was pleased to think that her fund would take care of a need especially for junior faculty trying to juggle multiple demands -- that had troubled her throughout her career in the department she led and loved.
During the brief window after the pain block, Sally hosted a small celebration on Moms 93rd birthday, May 24th (Bill drove Mom up and back from Foulkeways for the day; Diana and Chris produced the party). Special friends, some local, others from far away, stopped by her apartment for short visits every day. She and Diana worked with a lawyer to nail down a few details that would simplify the settling of her financial affairs, and she walked Bill through her methodical bookkeeping system. Next, she made the longed-for visit back to the Lake.
The drive up, in Chriss car, was easy and beautiful, taking in all the milestones Sally has passed countless times in a Hertz car. She loved seeing the lush greenery in the Delaware Water Gap. In the trunk was a wheelchair delivered the night before, on order from Vanessa, our spectacular coordinator of care with the VNSNY hospice program. Sally, Chris and Diana thought the chair was superfluous, but Vanessa urged them strongly to take it, presciently as it turned out. Vanessa anticipated and prepared us for every challenge we would face.
Sally was comforted to be back at her beloved Chapman Camp by early Friday afternoon. Four of her dearest friends, the Crawfords and the Prestons, came by with the funny repartee she so loved. She was in and out of the action, which mostly looped around her as conversations had been doing for a week or so. She followed it with her eyes closed and an occasional smile, otherwise too tired to contribute.
On Saturday morning Giny and Fran drove her to a meeting of the library committee, which she had co-chaired. That she made it at all seems miraculous in retrospect even though she was able to stay only briefly. Back at the camp, friends called and came by that afternoon and made appointments for the next day. She was processing the disappointment that even this limited engagement was more taxing than she was now able to handle.
That evening Chris and Diana spoke by phone with their oncologist daughter, Allison, about the trajectory they were observing. Allison urged a return to the city first thing Sunday to be closer to VNS hospice care. Diana checked with Sally that evening. She wanted to stay till Tuesday as planned.
But on Sunday morning, all agreed that her condition was changing fast. When Diana said gently that she didn't want to scare her but felt they should go back, Sally replied simply, "I'm scared too." They were back in NY by 2:00 on Sunday afternoon. Helene joined them right away.
Activating the care network was daunting in the middle of a holiday weekend but Helene, Diana and Chris were able (barely) to cope through the afternoon and to line up 24-hour private help starting later that night. Sally seemed comfortable and calm but was no longer lucid. She became increasingly delirious. By mid-afternoon she could no longer carry on a conversation of any length, or move around on her own. The speed at which she was losing the ability to function was frightening.
The worst two hours involved a four-person struggle (Sally still in charge) to get her safely into bed. She retained her equanimity in spite of all the bumbling around her, but did show a touch of irritation when Diana stepped on her hand while trying to protect her head from a sharp-edged glass table. "Would you please stop hovering," she said in her best take-charge Sally tone.
By the end of that long day she was no longer the Sally we all knew -- vital and vibrant and filled with curious enthusiasm for everything around her. She was still the gracious, gutsy, tenacious, and sometimes hilariously outspoken force that she had always been. That was plenty to treasure for as long as she could hold on. The experts were saying it wouldnt be long -- "days, not weeks" they said. As best we could tell she was not suffering.
She was mumbling about various worries and did seem to respond to reassurances that school was out, the papers were graded, the students had gone off on vacation, and the library at PLP was ready for the summer. She nodded when she heard that.
At one point, she insisted that the aide help her into the wheel chair and the living room. She opened her eyes and announced that she had a lecture to give, pointing to an audience that only she could see. She looked radiant. Diana asked if it would be a chemistry lecture. "Of course not," she replied as though she had heard something ridiculous. "Chemists don't give five-minute lectures."
Later that night she told Diana she wanted to go home. Diana said, "You are home." Sally said, "No. Home home. I want to go to bed. I want to go to sleep." Helene, Chris and Diana were taking solace in their sense that Sally was and felt comfortable and safe, as she had hoped the VNS hospice program would assure when she selected it. Getting to PLP was the last milestone she had set for herself. She had made it. Now being at home was a relief: no more tubes, no more needles, no more interventions, no more roommates (no matter how amusing), no more crushed hopes.
On Tuesday, May 29 Diana asked Sally if she wanted Muff and Bill to come. She said yes, tears rolling down her cheeks. They were here the next day and it was clear to us all that Sally was aware of their presence. She was spending more of her time in a far away place. But being together one more time as the four Chapman children reminded us how much we have treasured that identity and how acutely we will feel the hole in the line up -- in dozens of family photos -- between Diana and Muff.
Our sister smart, strong and fiercely independent -- was tested beyond endurance over the past ten months, beyond comprehension even. Every time she flew over the handlebars for another face plant on Safety Last, she picked herself up again and rode on. She never stopped being Sally, the teacher who expected much of her students but more of herself, the scholar who knew more than anyone anyone knew, the self-reliant feminist who was unfailingly thankful for every kindness extended to her, no matter how small.
She didnt want to make a fuss, or to inflict one on others. She lived the PLP credo, "simplicity, sincerity, service." She tried to limit as best she could the demands she made on us. "Not now, she would say when we offered to come back to NY to help with a new crisis. I'll need you later. We came anyway. Later came. We returned. She did need us. And we will be forever thankful for the times we were available -- and she allowed us -- to pick her up and dust her off after another crash.
Sally would have wanted us to thank so many people who were there for her in so many ways. You know who you are (as she wrote here from time to time). Please know how grateful we three are to you (even if we dont know who you are). Thank you for caring for our special sister when she needed you, for seeing her as the fabulous human being she was, for loving her as we do.
Helene, with whom weve been hanging out of late, has impressed us as perhaps the most erudite, loyal, and caring person weve ever met. No wonder Sally cherished her company. One day she picked up a book Diana was reading and spotted a quotation that was missing its crucial last line. Well end this long blog post with the quotation that Helene can quote by heart. It closes Thornton Wilders The Bridge of San Luis Rey, the fictional story of a bridge collapse that consigned five innocent people to death.
Soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.
If this were Sallys post she would now go back through it and eliminate at least half of the words. We are too lazy. Instead we will conclude by saying that she would have wanted us to remind you of her New Years Eve posting. "Do what you can to enjoy the moment." She did that under the most adverse of circumstances. She showed us how. The pretty guarded person let down her guard during this ordeal. She took in the love all of it. So please take consolation in the fact that Sally knew that you loved her. Please know that she loved you back.