I START THE WEEK with a phone call to the doctor. My discomfort is minor, but the urgency of checking it now reminds me that I am now part of a subculture measured, not on an economic graph and sociologic grid, but on a health progress chart. According to this "Criteria for Performance Standards" which hangs on the oncology (cancer treatment) bulletin board at George Washington University Medical Center, I measure somewhat less than 80 percent: able to carry on normal activity with effort, but with symptoms of disease. (It could be better: 100 percent or no complaints or evidence of disease; or worse: 20 percent or very sick, unable to care for self, requires institutional or hospital care.)
This subculture of the not-quite-well-not-beyond-the-pale exists everywhere, and it is growing as new drugs and medical procedures stretch out lives. But here in the Capital it takes on a flavor of its own. "In Washington," my physician, Dr. Philip Cohen, told me when I started chemotherapy with him early this summer, "our patients are busy ." The clinic makes an effort to keep us busy people from sitting around waiting for test results. We can come to the doctor on our way to work one day for blood counts, back the next for treatment. We can be helped to lead a "normal" life.
I head for my office in the National Press Building. I am executive director (part-time) of the National Commission on Confidentiality of Health Records (NCCHR), a small nonprofit organization of some 25 groups ranging from the American Psychiatric Association, National Association of Social Workers and American Academy of Pediatrics to the Blue Cross Association and PTA.
I must finish preparing for tomorrow's emergency board of directors meeting. I begin to check agendas, kits, priorities with my assistant, Toby Devin, and our administrative secretary, Diann Stanley. Later in the 13th floor Tap Room, we eat the best hamburgers in town and go over NCCHR's problems as we have so many times before.
We have done a great deal to achieve our goal -- a fair balance between the patient's right to privacy about his physical and mental ills, and society's legitimate need for information. But it has grown increasingly difficult to raise funds to support an issue which is important but doesn't usualy involve monetary gains or losses. We have only enough funds to continue at this level of activity through the end of the month, with me working, supposedly, eight hours a week.
Back in the office, our four-person staff -- shrunk from five -- continues our preparations. I give in to my aches and pains and go home at 4 p.m. Tuesday
My husband is away for a few days. My mother is visiting me; I drop her at the East Wing of the National Gallery before its doors open at 10 a.m.
I go on to my board meeting, chaired by Dr. Alfred Freeman, a past president of the American Psychiatric Association. By 11 a.m., most of the conferees have faced the ultimate reality (no money), though some are still thrashing about, talking of foundations on whose doors we have knocked repeatedly (we had seed grants from the Rockefeller and Ford Foundations and from some corporations concerned with occupational health information -- notably Exxon -- but these days, seeds must sprout and be watered by other sources).
By noon decisions are beginning to emerge. The group will stay in business. I'm pleased at that. But it will operate sans office, as a consortium of interested groups, with the American Hospital Association hosting semi-annual forums the first year. I push for firm commitments as to which member organizations will assume which of our functions; that balloon is left a little too high in the air. Wednesday
A friend stops by after dropping her little boy at nursery school. She had planned to help me with some typing, but I am more drained from yesterday's meeting than I had expected.
I go to the hospital to have my blood checked, then head home, thinking I've gone down from 80 percent to 70 percent on the performance chart. I collapse on my bed and then telephone my office and Bob Belair, our lawyer. I prepare for a planning and development committee meeting I am to chair at D.C. General Hospital later in the afternoon. I have been a D.C. General Hospital commissioner for almost two years; it is one of the most interesting things I do.
The committee meeting goes smoothly. We receive comments on the long-range plan we have drafted over the past year -- a tedious, grueling job, involving citizens, consultants, statistics, the works. About 160 copies of the document have been distributed to sister institutions, local officials, librarians, neighborhood associations. The plan is now ready for final full commission approval. I don't think it's shelfbound; our budget people are already using it.
At home, I browse at the bookshelves a bit. This year I've been through the novels of Jane Austen and cannot find a satisfactory replacement. Thank goodness for "Upstairs, Downstairs." And for newsy, warm calls from my sons, one in Boston, the other in Atlanta. Thursday
Fall is in the air; it feels good. At my desk, I tackle correspondence, draft follow-up material to Tuesday's meeting. Three major medical privacy bills have been introduced in this session. A young woman from another congressional office comes by. Her boss is interested in introducing still another bill; the more the merrier. All would narrow the amount of personal medical information now being passed around, though the administration bills reflect the government's habitual way of exempting itself from its own strictures. Our office will be sorely missed.
Planned Parenthood's Lee Bullitt stops by for lunch. A House-Senate conference committee was scheduled to meet to resolve differences in the D.C. appropriations bill; the touchy question of abortion divides them.
I have drafted a statement for the D.C. General commission, stressing our commiment to our patients' health and the fact that we do over 1,000 Medicaid abortions a year -- most for very young and poor women. Loss of their right to choose this treatment could seriously affect their well-being. Chairman Gilbert Hahn is circulating my draft; the commission will vote on it shortly.
Back down in my office, I lie on my couch and continue with memos, form letters and plans. Our staff attorney has left for a government job; a summer intern has returned to law school in California.
When I get home, I call our hospitable neighbors to see if I can sit in their hot tub. Radiologist Dr. Charlie Boyle turns it on and I find it more relaxing than the nightly news.
I receive a visit from Nancy Lewinsohn, assistant provost at Wesleyan University and once my colleague in Sen. Ribicoff's office. My subculture existence has made me more dependent for sociability on people coming to see me; I've certainly found out -- in depth -- who my friends are. Some people seem threatened by the world of the even semi-seriously ill. They stay away or indicate their willingness to sit in a dark movie with me. Others keep in touch. Friday
"Background music," Stewart Alsop called the knowledge of personal mortality as it haunts the sick. It never quite leaves me, but this morning it is particularly strong. I decide to work at home, trying to stay busy to fend off the fear. I spend my usual hour on the phone, going over the minutes of the D.C. General meeting, plugging away at administrative details with my office. I straighten my desk, balance my checkbook.
I call my good friend Edith Fierst, now working with the White House Task Force on Women. I had attended a briefing on Carter health initiatives at which she assisted Sarah Weddington a few weeks ago. I want more copies of the briefing materials, which were good. I get to work on a book I am planning. I've done the outline; now I must finish sample chapters.
At noon, I put on my jeans and walk down to La Ruche for lunch with David Schaefer of Sen. Ribicoff's staff. We are having a "Ribicoff reunion" in the fall -- a hail and farewell. Over the quiche, David and I discuss the reunion program and the difference between past and present staffs.
At the end of the day, my husband and I go down to a restaurant for a happy hour with Jim Alexander, once my boss at HEW's Center for Community Planning. Now a consultant, he is taking an office in a building just going up on a pier jutting into the Potmac and has asked if I'd be interested in some space there.
We inspect the space while it's still light. I love it. But is has no elevator. One flight of steps is one too many for me. I say I'll let him know when I get back from our house near Bethany Beach.