I put my talk at the beginning of the service because this is the part where you all get worried, right? The spouse? Will he say too much, say too little, get too personal? Break into tears? (no promises on the last...the practice runs have not been promising)
I've said a lot of personal stuff one-on-one, and that is the better way. As you see in the program, this is primarily a chance to thank people—a lot of people—and to say a few other things Misty would want said.
Misty survived far longer than most people with her metastatic diagnosis. Figures are a bit hard to come by, but her survival was at least at the 95% to 97%-tile, and taking into account the multiple metastases and other complications, probably better than that. This wasn't just luck.
Part of this was due to Misty's sheer cussed will to live. Elizabeth Kubler-Ross's fifth stage, acceptance?—she never made it to that one, and fought all the way down. Her active participation in the management of her disease was most certainly also a factor, but she had a lot of help along the way. I can't name everyone, and this list is biased towards the last year or so, but let me name at least a few.
First and foremost, her oncology team of Carol Fabian and Diann Godbey, who did incredible things and until the very last, always had a backup plan. And in May, when there was no longer a Plan B, they stepped aside and, with a lot of tears and goodbyes, pulled back and let Misty die at home. They were assisted by the superb staff at the KU Med Cancer Center, which became sort of a home away from home. While these people were our primary support, I would also thank the hospital's ward oncologist, Alan Fleming, who was responsible for Misty's care during her assorted hospitalizations at KUMC and devoted huge amounts of time to explaining things.
Locally, we had our family physician Elaine Kennedy. As important, but often forgotten, our pharmacists—Newt King of King Pharmacy and Mark Smith of Orchard's Drug. These guys are independents: Walmart, Walgreens and Target are trying to run them out of business, with the help of Congress. Give them your business; that might save your life some day.
While it is very unpopular to say this, KU's insurance plan really isn't that bad. I can't recall any instances where they turned us down on treatments, no matter how creative Carol Fabian became. Of course, Misty would definitely add at this point that at least we had insurance: in the richest country in human history there are 40-million people who do not, and neither political party seems in the least concerned about that state of affairs. You might think about this in November.
KU in general was very supportive, flexible and accommodating throughout this long strange trip, and did everything it could to enable Misty to continue teaching until almost literally the very end. Granted, KU still pays its top athletic officials six times what it pays its top cancer researchers but hey, I suppose there are those who, in their dying moments, find solace in the knowledge that everything possible has been done to defeat Missouri. (Misty wasn't one of them.)
Misty supplemented her conventional treatment with an array of complementary therapies. New age nuttiness?—remember, she lived longer than at least ninety-five people out of a hundred who had her metatstatic diagnosis: your call.
Again, the list is long but I would particularly single out her psychological therapist Rita Stuckey, her massage therapist and yoga instructor Anne Underwood (Anne's on a retreat in Chaco Canyon at the moment, and isn't here, or maybe she is?), and more generally the Yoga Center of Lawrence and the Southwinds Health Collective, as well as Neu Physical Therapy at various points. Southwind has the "Misty Gerner Cancer and Complementary Therapy" book collection now, by the way. The Community Mercantile had organic produce—can't hurt...—and invariably had in stock whatever esoteric supplements we looked for. Oread Friends Meeting has been our spiritual community, and support, for the past ten years. Finally, there was the Commonweal cancer program in Bolinas, California, where Misty did a week-long intensive workshop in July 2003 that marked a major turning point in her ability to deal with the disease. If you know someone with cancer, you should have them check this one out—just Google "Commonweal Bolinas"; you won't get a lot of false positives.
Finally, Misty had a huge network of friends supporting her throughout the course of the disease. Just look around this room. In the final weeks, there were many of you who offered help, and even though I didn't take you up on this—things were just sufficiently technical and just sufficiently weird that it was easier to work with a small group—it was tremendously reassuring to know there was backup available.
There was a small group who devoted a great deal of time—coming out day after day—to help me enable Misty to complete the dying process at home. From Lawrence: Alice Leiberman, Pam Gordon, Sarah Crawford-Parker, Harriett Lerner, Anne Underwood, and Joane Nagel. From out of town: Fiona McLaughlin, Helena Cobban, Julia Pitner, and Jenny Beer, along with the professional assistance of Jennifer Devine of Heart of America Hospice.
I've written in the MistyList about hospice, and I'll repeat those sentiments here. It is not medically possible for everyone, but if you can help a loved one die at home, that's the way to do it. It's about 80% heart and 20% head—the technical parts of helping someone to die in comfort are a lot easier than those involved in helping them stay alive. The hospice folks can guide you through the head part; the heart part just comes naturally. There's nothing to be afraid of.
Misty would want people to have at least one lesson—a take-away point—from her experience, and so I'll indicate the one place where we miscalculated. This whole thing ended much more rapidly—and with a very different pattern—than either of us expected, despite Carol Fabian having warned us very explicitly of that possibility as recently as February. Misty taught her final class on 10th of May, about the time she started having double-vision. The leptomenegial carcinoma—cancer in the lining of the brain—was detected by an MRI scan on the 12th, having been invisible only eight weeks earlier. By the 17th she was having difficulty reading, by the 19th her speech was significantly impacted, by the 20th she could no longer comprehend a simple one-page "How are you feeling today" form. On the 22nd we stopped treatment, which wasn't working anyway. Not quite a car accident or heart attack, but in the context of a disease with a reputation of giving one warning, this incapacitation came on very fast—less than ten days after more than eleven years of illness. So, draw up a will, financial and health care powers of attorney, and a living will if you haven't already. Do what you need to do; say what you need to say. Carpe diem.
Breast cancer. We're about to enter October, the "Breast Cancer Awareness Month" that Misty dreaded annually. The main-streaming of breast cancer is certainly a positive development compared to the days when it could not even be mentioned in polite company. But mainstreaming has oftentimes trivialized it: it is a difficult and wasting disease, not something readily solved with perky "retail therapy" [I'm not making this up...watch the ads next month] or, contrary to the dramatizations, something that always ends with a positive outcome and the woman running a marathon 3 days after completing radiation. I can't believe what the women who go through breast cancer treatment put up with—and I'm not just thinking of Misty here, but a lot people, including many in this room—pain, fatigue, depression, uncertainty, fear and in the end, a life that doesn't return to what it was before. I'm not sure I could do it, but they do, and not only for themselves: they do it for their children, for their partners, for the children of their partners, their parents, their community, whatever. This is a very big deal.
In December 2004, Misty held a large party to celebrate having survived cancer for ten years; quite a few of you were there. She stood on a chair to make a speech, and at the end of that I thought okay, put on the ring, disappear in a flash, and quietly live out the rest of your days in Rivendell under the care of Elves.
Such was not the case: there was no magic ring, nor elves. She lived another year and a half, went to the International Studies Association meetings in Hawaii and received lifetime service awards from both the organizational headquarters and the women's caucus, attended the Quaker Friends General Conference gathering in Virginia, secured another quarter-million in NSF funding (and actually completed most of the work on that grant), and despite increasing complications of the disease from about October onward, over Christmas break had that miraculous three weeks in Palestine—Abu Dis, Bethlehem, our old haunts in Ramallah and even 24 hours in Gaza.
Misty crafted the "I am alive" credo, as Beth Schultz calls it, in December 2003. I'm not sure what inspired her to write it, but I think she was dealing with adriamycin at the time, and yes, coping with adriamycin would do that. It's in at least one doctor's office now, and with any luck you'll find in somewhere in the future, in a hospital gift shop, on a little plaque with a border of angels, and yes, pink ribbons, and attributed to either Helen Keller, Mother Theresa, or Hildegaard of Bingham (presumably not Bernard of Clairvaux). But it originated with Misty, and she worked several days on it, crafting every single word. Not only did she write it, but she lived it, for eleven years as a cancer survivor, and for a final 45 months continuously in the shadow of metastatic disease. In the end she died, as we all will die, but as long as she lived, she was alive.