Dear Friends and Family,
It is the end of the day, and I’m sitting in front of the fire, listening to the wind sing through birch and spruce. Thanks to the graciousness of a friend, this small cabin in remote coastal Maine has been ours for a week of respite and renewal. There are bald eagles, loons, and harbor seals here, blueberry heaths and llama farms, a rooted way of life and flamy fall colors mixed in with the restful greens of the conifers. Yesterday, at dusk, on a Canadian island just over the border, we saw a graceful, silver-white coyote.
All of you are very much in my thoughts. Filed on the table and floor are the many loving letters and cards that have arrived since last December, and I have been reading and savoring them once more, reconnecting with the news of your own lives, taking in all the support, laughter, advice, and hope. A form letter is, of course, a very inadequate response, yet I wanted to respond in some way, to give something back after months and months of nonstop receiving.
As most of you know, in November 1990 I was diagnosed as having non-Hodgkin’s lymphoma. My initial treatment was immensely successful, as I was sure it would be. After only two rounds of chemotherapy, my large chest tumor had disappeared. Treatment continued until April and my doctors were optimistic this would be enough to cure me; my chances for relapse were considered rather low, about one in four. I learned all that I expected to learn from cancer, and a whole lot more. It truly was an initiation into the mysteries of healing, painful at times but also persistently joyous. In May, with clear scans, treatment ended, and my stamina returning, David and I made extensive travel plans for the summer and prepared to move on to new adventures.
Then, in late May, I suddenly developed an odd gurgling wheeze while visiting friends in Maine. I shrugged it off as some sort of weird asthmatic hay fever, and my doctor agreed with me, but we decided to do the tests anyway, just to put the matter to rest. The result of the scan came as a complete shock; my chest tumor had returned and was growing rapidly. Within seconds, it seemed, my life lurched into a different reality. The next day I was admitted to the hospital for a new round of intensive chemotherapy. I had cancer again.
The rapid relapse of solid-tumor cancer, like breast cancer or lung cancer, is considered very bad news indeed; Western medicine generally gives up hope for a cure at that point. Non-Hodgkin’s lymphoma is different, in that you get a second chance. If you can get back into remission, or nearly so, with chemotherapy and radiation, then you can qualify for a bone marrow transplant, an intensive treatment developed in the last ten years that appears to offer about a fifty percent chance of cure. The “if” is a big one; only about one in three relapsed lymphoma patients make it back into remission. Still, I had a clear agenda and lots of reasons for hope. After my initial shock wore off, I quickly recovered my confidence, and I felt deeply that this was only another phase of training, only a deepening for the initiation, only a continuation of the journey. I sailed through my five-day chemo course in early June, and within three days my wheeze had disappeared. We seemed on track once more.
Ten days later, on the night of summer solstice, the wheeze suddenly returned. An X-ray showed that after an initial shrinkage, the tumor had quickly rebounded, and was bigger than before. Even on chemo, we were losing ground. And, for the first time, I got scared. Really scared. Up to this point, I realized, I had never really been afraid, I had never once truly contemplated that I might not get well. I had faced a lot of things, but I had never felt compelled to face the very real possibility of a hasty premature departure from this beloved planet of ours. But here I was, the tumor pressing on my airways, having trouble breathing, chemo not working, the doctors scrambling.
It was decided to put me into an urgent course of chest radiation. I went into retreat for five days, spending all my time with my notebook on the beach, writing, I felt, for my life. It was a desperate time. I became acquainted with numerous fears I had never met before—nasty little gremlins who whispered horrific things in the back of my mind like, “This tumor is stronger than you are!” There was no way to run away from them or try to shut them up; this only seemed to increase their power. Instead, I began to learn how to whirl around, catch them off-guard, grab them by their ugly little necks and say, “Okay, speak!” And I wrote what they said down in my journal. This sounds easy but, believe me, it was the hardest and scariest thing I have ever done in my life. The things they said were truly awful, and at first, I worried that writing them down would give them a kind of power over me. In fact, the exact opposite was true. Only by letting my fears speak openly could I figure out ways to respond to them, to say, “No, you are wrong, and here is why!” I sensed there were powerful resources for healing within me that I had never accessed before, that I needed to access, and fast. And my guides into these inner realms, the gnomes who had the keys that could unlock these secret treasures, were my fear-gremlins. They did not give up these keys easily, mind you. But hours and days and whole notebooks of writing later, I knew I was getting somewhere. I knew that the daily radiation was working. I knew that I had discovered, slowly and with pain, the deepest levels of my DESIRE to live, and that this was making a difference.
My instincts also told me to get as close to the wilderness, as close to healthy living land and to wild creatures, as possible. This is not always easy to do in New England, especially given frequent trips to the hospital, but we did it. In the mountains, on the rivers, in the forests, on the islands, I received abundant strength and support, and the channels of communications with the sacred in our world, with the living wild spirit of the Earth, and with what I call God and the Goddess, were especially open and clear. I learned how much help is available to us if we open ourselves to it, and in how many different forms it can arrive. During this time, friends organized several large healing circles and prayer-meditations for me. One, in Sweden, involved young people from sixty countries; another, in Prague, a powerful group of innovators from Eastern and Western Europe. Thanks to friends at a conference of nonviolent trainers in Holland, I received loving messages of support from people I have never met in South Africa, Thailand, Guatemala…The global network of threads was indeed humming.
Anyway, it all worked. The tumor melted away under the healing fire of gamma rays. I got on the waiting list for a bone marrow transplant at my wonderful hospital, the Dana-Farber Cancer Institute in Boston. In mid-August I went in for a new series of scans and tests to confirm that I was in remission, knowing already that a chest X-ray had shown that my tumor now looked like mere scar. The scan showed, instead, that while the chest brushfire was indeed out, in the meantime the rest of my body (untreated during the localized radiation course) had manifested at least seven new sites of disease. I had spots and nodules in my lungs, in my spleen, in my liver, in my ribs. Nothing terribly large, but lots of them. The biggest was a peanut-sized liver tumor. Lymphoma is considered a systemic disease to begin with, so these were not called “metastases,” but they were, shall we say, an unpleasant surprise. To complicate matters, my own beloved doctor had gone on vacation a week before and broken his neck in three places while body-surfing. Thank God, miraculously, he is neurologically okay and will recover in a few months, but meanwhile, he was not able to meet with me and I had to find out what this unexpected development really meant from new doctors, whose faces I could read less well. As far as I could tell, their faces looked worried. Would these spots disqualify me from receiving a transplant? I asked. The answer was: maybe. I had to prove, in the next few months, that I could shrink these tumors down on regular chemotherapy; otherwise, chances for a successful transplant would be minimal. There was a new regimen to try, new drugs – well, actually only ONE new drug—and hopefully the cancer would respond even though, ahem, it didn’t the last time. The doctors were good about staying positive, but I knew what the score was, and they knew that I knew.
Aug. 19, 1991, is a day I will never forget. As we drove to the hospital for my crucial three-day inpatient chemotherapy treatment, we heard the radio say that Gorbachev was under house arrest. We brought the laptop computer into my hospital room, hooked up the modem, and began sending and receiving electronic mail messages to our Golubka partners and friends in Moscow every few hours. Igor, Zhenya, Vanya, Natasha and the others were true heroes of the resistance. They worked day and night, printing out materials on nonviolent civilian resistance (excerpts from the nonviolence anthology we had published in Russian a few months before), running around the city finding photocopy machines to make thousands of copies, and handing them out to people on the barricades, who surrounded them by the hundreds and snatched up the copies eagerly. As the messages from them grew more hopeful, as the images on television confirmed that the miracle was true, powerful drugs continued to pour into my veins and I began to believe that my own internal coup of lymphoma hardliners would be as thoroughly routed! On Wednesday morning I cried when I saw the tanks leaving the city, and thanked God I had lived to see this and to know we had played our small but significant role.
It was a tough month, yet it was not as bad as the rock-bottom time in late June. I learned yet more about embracing the paradox of free will and fate, choice and grace, fighting and releasing. On the one hand, there is a body of thought that encourages FIGHTING against cancer, mobilizing inner strength and determination, putting one’s foot down and saying, “I will NOT accept this, this WILL NOT do!” There is an equally venerable body of thought that encourages ACCEPTING cancer and the possibility of death, accepting the lack of control over the outcome, putting oneself in God’s hands, releasing life and trusting that no matter what, everything will be okay. There is truth to both paths. But it is a true paradox, and figuring out how to live on a day-to-day basis according to paradoxical principles, while coping with a great deal of uncertainty and pain, can be perplexing. All I can say is that, somehow, I am learning how to do this, for which I am grateful.
On Sept. 12, a new radioactive scan showed that all the hotspots were again gone except for a slight smudge under the ribs, which disappeared a few weeks later, after the second round of new chemo. A CT scan showed that everything had shrunk down nicely, to residual tissue that may or may not harbor microscopic disease. My doctors hugged me and looked VERY relieved; the transplant doctor pumped my hand and whipped out his calendar to discuss dates and schedule as if he were a film producer and I an actress who had just landed a starring role. No one is willing to fool around with unnecessary waiting, so my harvest operation is set for Oct. 21. I’ll get the first bed that frees up in the transplant unit, so I’ll probably go in before Halloween.
For two weeks after this good news, my writing hand froze. I had been like a rock climber on a long, dangerous pitch who sees her belay pins pull out one by one until only a single pin is left to protect her from a fall. But I had still had that one pin (the new drug), and it was only then, looking back down, that I became, as climbers put it, “gripped.” That was too close for comfort! Yet here I am, safe on a ledge, with these four months of hard scrambling behind me. There’s quite a climb ahead, too, but somehow I had always felt getting back into remission, and into shape for a transplant, would be the hardest part. And now I’m hoping I was right!
So I’m gathering strength for the next challenge, and physically it will be a very demanding one. In brief, an autologous bone marrow transplant is somewhat misnamed; it’s really a way to pack eight months’ worth of treatment into five days, which normally would kill you, but won’t as long as some of your own bone marrow is first taken out of you, put into the freezer, and given back to you immediately after the treatment is over. So I am my own “donor.” First comes the harvest operation to remove five percent of my marrow, which is washed with antibodies against tumor cells, just in case. Then the treatment: two days of high-dose chemo, followed by three days of two-times-a day total body irradiation—the equivalent, they tell me, of standing one mile from ground zero in Hiroshima. This should do a real number on any cancer beasties that were unwise enough to hang around this long. Then the marrow reinfusion. Then a waiting period of three to six weeks in an isolation room (people do come in, visitors are allowed, only they have to wear masks, gowns, etc.) while the marrow establishes itself and starts making blood cells again. And then home for a long recovery period, lasting about a year, although after the first few months, if all goes well, I should feel pretty good. If it sounds long, painful, and a little dangerous, it is. On the other hand, many hundreds of people have gone through this and are now healthy and cured. The team at the Farber really knows what it is doing, and I trust it completely. And I am so grateful to have gotten this far, to have the privilege of receiving this treatment, and to still have this wonderful chance of becoming fully well again, that I think I will endure the discomforts of the transplant better than most people. Everything I’ve learned in the past eleven months will come in handy, and I feel as prepared as I can imagine feeling, facing such an unimaginable process.
In these remaining few days, I am in full “transplant training”—exercising daily, eating as much as I can (David loves to stuff me with good food), healing up the last sore spots from chemo, and stocking up on good novels, music tapes and videos to take into my little space capsule. I will have my own phone and will welcome calls. I plan to use an answering machine to screen calls, so that people can feel free to phone anytime; if I’m too tired or sick to talk, know that I’ll appreciate your message, and if I don’t call back, try again sometime. David and our home answering machine will direct calls my way. Many of you who tried to phone this summer discovered that we were usually not able to return the calls. But we always appreciate the messages. Letters, of course, are always good, as are positive thoughts and prayers sent without letters. My current belief is that during this dangerous, vulnerable time in the summer, when I had a whopper of a recurrence that received no systemic treatment for two months, it was all of our hard work and determination and passion and choice that kept those new tumors tiny and controllable. So never doubt that what you do HELPS!
Also, since we are true believers (having seen the results) in the medicine of laughter, we would like to invite all of you to participate in our Once-in–a- Lifetime Bone Marrow Transplant Humor Contest. Submit any joke you wish; the only criterion is whether you think it will make me laugh. Multiple entries are welcome. Winners will be published in the next mass letter. (This is, by the way, the earliest I have ever sent out our usual end-of-the-year letter; yet another sign that cancer increases overall virtue.) To give you some idea of my tastes in humor, here is our pre-transplant contest winner, submitted by our friend John during one of our circle dance gatherings:
Q. “What did the Zen Buddhist say to the hot dog vendor?”
Q. “Make me one with everything!”
The most surprising aspect of these past four months is that despite the pain, uncertainty, and even, at times, terror, I have also been very happy. I have been living life fully, taking nothing whatsoever for granted. Very often I have physically felt fine, and I have gone to many dances, climbed many mountains, joined a Slavic singing group, tended our bountiful herb and vegetable garden, read many books, enjoyed many visitors; and have swum and relaxed at the beach. Somehow, through all of this, we have managed, most days, to have a very good time! Or as Wendell Berry puts it: “to be joyful, even though you have considered all the facts.” My most constant source of joy and support has, of course, been David. A whole other letter could be written about all he has done and is doing for me, on every level, from coaxing me to eat to giving me foot massages to doing all the logistics in our lives to discussing new ideas to reframing beliefs to holding me when I need it, which is often.
David has also been running Golubka USA single-handedly and well during these months. His latest project has been compiling and editing a fascinating anthology of ecological writings that will be translated, published and distributed by Golubka USR in the next few months. By the time I am well enough to go back to the Soviet region, many unimaginable opportunities and new directions for our work there will probably have evolved. In the meantime, our existing projects go nicely, and we are extraordinarily proud of our partners and friends in Moscow, who are doing amazing work during these amazing times.
My book “The Invisible Threads” was released in April and is, I trust, going where it needs to go and doing what it needs to do. It got some nice reviews in the St. Louis Post-Dispatch, Library Journal, In Context, Fellowship, and several other places. A Russian translation is in the works. I have really, really appreciated the support many of you have provided by buying the book for yourselves, libraries and friends, spreading the word, nudging bookstores and so on. Thank you! One of the saddest immediate aspects of my recurrence was that we were forced to cancel, on short notice, a celebratory book party in Cambridge. Hearing from many of you about your enthusiastic reaction to the book, and your efforts to help promote it has helped ease that disappointment. In the post-coup era, it seems interest in the Soviet Union has been rekindled, and so I am hoping the book will reach many new readers in the months to come.
What will be next? The creative spirit is quite frisky these days, and I am exploring bolder territory with my writing than ever before. The connections between personal healing and global healing, between cancer-fighting and earth-saving, have become ever clearer to me. Will I write something about this for publication? I think it is too early to tell. Perhaps, and on some days I get very excited about other ideas. The right thing will happen, and I will always treasure the riches in the extensive journal I have kept so far, and know that what I’ve learned will surface in my work in some form.
Much to be grateful for in the past, much to become passionate about regarding the future. The present, also, filled with beauty. Another paradox: I both know, in my deepest soul, that I will get well, and I know that I cannot know this and that other forces – for one, the will of God and the Goddess, and for another, what some call luck, some call randomness, some call destiny, and some call Coyote, the Trickster—can, sometimes, confound even the strongest desire. But at other times, it is our free will that tips the balance. The outcome is never guaranteed, but it is always open to influence. Only by fully exercising our choice can we truly encounter our fate. As Martin Buber says: “Freedom and fate embrace each other to form meaning; and given meaning, fate—with its eyes, hitherto severe, suddenly full of light – looks like grace itself.” I know that I am mobilizing every resource available; I have fiercely chosen to live and love. I think I will survive cancer. If I don’t, I will be thankful for this beautiful summer, for this beautiful fall, for all the blessings I have received in so many ways. There is a Navajo song that I often sing:
“Now I walk in beauty.
Beauty is around me.
Beauty is before me,
Above me and below me.
In beauty it is finished.
In beauty it is finished.”
The year swings toward the dark transformative power of Halloween and the rebirth of light and hope at the Solstice. May your days be filled with love, and may you walk in beauty.