Dear Folks, It’s a gray Saturday afternoon on Foundation Farm. We’re hoping that it’s going to snow. The ground is half bare, unheard of for January in New Hampshire. After a December when it hardly ever got above zero, we’re having a January when it never seems to get below freezing. Yesterday we were in full-fledged Mud Season, puddles everywhere, water leaking into the basement as it usually does in March, the chickens foraging in delight, finding patches of grass to eat and wonderful sloppy mud to scratch in. They stopped laying in protest during frigid December, but now they’re producing at their spring rate.
Everyone in the Valley is confused. We go around suspiciously, still in our many-layered winter outfits (hey, this is New England — in half an hour it could be blizzarding!) but with our coats open and our mittens in our pockets. Never saw a January like this, people are muttering. Must be the greenhouse effect.
On Foundation Farm today Sylvia and Heather are off at the feed store loading up on grain for the animals. Don is out with the chainsaw, taking advantage of the weather break to cut up downed trees. The edge of Hurricane Hugo came by last fall and showed us exactly which trees had rotten cores or weak roots. Don has been slowly cleaning them up and turning them into firewood.
Karel is upstairs with his three sisters, sorting out Anna’s possessions. He has been living in her room in the midst of her things, and it’s time to make it HIS room now. This obviously is a hard task emotionally, but they seem to be doing all right. It’s a pleasure to watch those four siblings support each other.
Somehow without Anna’s hands or much help from mine the farm is cranking along. We are paying for some work we used to do ourselves, like driveway shoveling and housecleaning (that was a hard one for me to accept — I have a Thing about cleaning up my own messes — but then I’m learning to accept a lot of necessary changes these days.) Sylvia is handling the animals and Don the wood; Karel helps with both and also turns out to have Anna’s knack for fixing things. I’ve finally gotten around to sending off the sheared wool to Harmony, Maine, where it will be spun into knitting yarn, and I got the SEED ORDER done, one of my favorite tasks of the year. The seed packets have already started COMING! I sort and classify them, mostly just to fondle them and dream of the carrots and parsley and pansies to come. In another month I can start indoor planting. I have a feeling that as soon as my hands get into the dirt, my health is going to soar upward.
Karel has started a good job as a lab technician at MHMH (Mary Hitchcock Memorial Hospital, to which I have introduced you in previous newsletters, and a subject I will return to later in this one.) When he’s not working, he intends to finish a thesis that will complete his undergraduate degree and then start taking graduate courses in biochemistry.
Heather, at 2 1/2, is bursting out not only with new words, but sentences, paragraphs, and occasional epic poems of wild originality. She says something and we all look at each other and ask, where did she pick that up? (The other day Sylvia remarked that Heather’s new slippers made her look like an elf. Heather: “I’m NOT a elf! I’m HEATHER!”) If she comes toddling into my study and I’m exhausted and stretched out on the couch, she comes up and kisses me and says, “All feel better now!”
Ah, me, life can be wonderful, even when you’re sick on a slushy gray January day!
My five weeks of daily radiation therapy were over two days ago. HURRAY! Now I have a two-week vacation to heal before the next hurdle. As you can see, I have kept the column going, and most days I put several hours in on the book. I’m on the Planet chapter, enmeshed in the great cycles of materials and energy that power us all — awe-inspiring stuff, and a good way to put my troubles into perspective. But primarily I’ve been sleeping, coping with a body that has become totally unpredictable, and finding my way around the strange new world of cancer. It seems like a year, not a month, since I last wrote, because my life has been so unroutine, so full of new experiences, and so emotional.
I have not been a quiet, obedient, model patient. I have had every possible emotion from joy to despair, with extra large doses of boredom and anger. I’ve felt everything strongly, maybe because I’ve slowed down enough to pay attention to my emotions for a change. I also seem to have developed a new ability not to fight an emotion, but just to HAVE it. When my poor friends call up to ask how I am, they find out. I don’t say “just fine” if I’m not. I let loose. By the time I’m finished, the emotion usually is too. “Being where I’m at” is a new game for me, and a valuable one I’m glad to have learned.
The despair has come whenever some heretofore normal body function has failed, which has happened gradually and inexorably as a result of the radiation hitting the innocent as well as the guilty. Nothing south of my navel and north of my thighs works right any more. I am taking three different medications to soothe or hide malfunctions induced by radiation, including finally a bladder infection that felled me completely for three days of chills and fever. At every step, after I got done despairing about being sicker, I then got furious at the treatment, the doctors, the whole misguided medical establishment. The alert reader will detect that fury in this month’s columns — which are much toned down from the first drafts!
The boredom came from day after day of using all my energy for writing and getting to the treatment center and having nothing left for anything else. I stomped around the house a few times yelling “I’m SICK of being sick! This is ENOUGH now! I can’t stand one more morning of waking up sick! I want my LIFE back!”
As you can see, I’m not a patient, I’m an impatient.
My best and worst moments have come from the same source — the frustrating but empowering necessity of dealing with the doctors at MHMH. What a trip that has been!
About halfway through the course of external radiation treatments I got so worn down and angry at the thought of “care-takers” deliberately poisoning my body that I became rebellious about everything, especially about the second course — an implant of internal radiation, scheduled for the end of January. I didn’t want any more radiation. I had never been given a good explanation why that step was necessary. So I declared that I would not do it until someone told me its full risks and benefits and convinced me that the benefits outweighed the risks. Seems a reasonable request, but it touched off an uproar.
My chief doctor, Dr. B. the gynecological oncologist, refused to deal with my questions. He sent me to Dr. T., my radiation oncologist, a young and genial guy with the endearing tendency to blurt out the truth in a very undoctorly way. “The reason we do the implant is that that’s the standard procedure for a Stage II Grade 2 endometrial cancer,” he said.
Why is it standard procedure? I asked. Couldn’t it be just one more case of medical overkill?
“Actually, I’m not sure,” he said. “And now I’m curious myself. I’ll go look it up.” And then he told me a bunch of stories that reinforced my position about standard procedures and overkill — like the standard procedure of removing the whole breast for breast cancer, until enough women refused to do it, and the medical community then learned that it often wasn’t necessary.
Dr. T. and I went off on a search through the literature, which fascinated us both and which did not provide any conclusive evidence that the implant step is either helpful or harmful. It was at that point that he admitted, “You know, up until now I didn’t actually see you as a person. I only saw you as a Stage II Grade 2 endometrial cancer.” (Keep that comment in mind, next time you deal with the medical profession! I didn’t know whether to sock him in the nose or to hug him for his honesty!)
Meanwhile I was peppering both Dr. T. and Dr. B. with funny cartoons about modern medicine — anyway I thought they were funny. Dr. B., I now suspect, hated them and increasingly hated me for questioning his authority. He was seeing me as a Troublemaking Stage II Grade 2 endometrial cancer. I saw little of him this month, because for the radiation I was in Dr. T.’s hands. (Dr. B. was to be my surgeon for the implant and for the hysterectomy a month from now). When I did see him for an end-of-external-radiation examination, something was very wrong. He acted both hassled and angry, and I can think of only one word to describe the examination — brutal. I left shaking and crying and knowing that I never wanted him to touch me again. The next day I asked to have another doctor.
That touched off the uproar. I have found out through the hospital grapevine that Dr. B.’s temper has alienated just about everyone. Apparently he is a brilliant man and a superb surgeon and is personally disturbed and depressed. “He has a terrible bedside manner, but he’s a great surgeon,” I was told from the beginning by the medical establishment. It was only in the midst of the emotions of the past month that I began to see the craziness of that statement — technically he’ll heal you, but personally he’ll kill you.
I realized at gut level the importance of “bedside manner” when I talked to a gyn-onc in Boston (I was calling for a second opinion and in search of a second doctor). Ten minutes on the phone with that doctor had me feeling better about myself, my treatment, and my prognosis than a whole month with Dr. B. At that point I willingly decided to have the implant. Before, if I had done it at all, it would have been with resistance and distrust.
I always knew that hope and optimism and trust were important in healing — I first read Bernie Siegel years ago. But I knew it intellectually. Now I can feel it in every cell in my body, in every up and down in my own attitude. Positive energy, a sincere upbeat word can keep me going for hours. Depression and negativism can stop me in my tracks. I’m astonished at the power of my feelings over my physical body. I honestly think a warm, cheerful relationship with my doctors can do as much for my recovery as the radiation implant. I want the hospital to support every aspect of my healing, physical and psychological. I wish I could pass that cellular-level understanding along to the administrators, who let a man practice when he’s technically sound but psychically sick, who think someone is all right as long as he does impeccable operations, though he depresses and abuses his patients.
Anyway, I have a new doctor now, the head of the MHMH gyn department. They are supporting Dr. B. to get counseling. The whole process was traumatic for me (making a fuss, getting someone in trouble, being demanding — hard for an approval-junkie like me!), but it was also strengthening. I actually identified my need and stuck up for myself. For me that itself is recovery.
Joy and gratitude have come this month at the times when I had surges of my old energy back. Then I remembered what it has always felt like to be me, and for the first time in my life I not only appreciated but I reveled in the simple miracle that I am alive.
Sadness came from thinking of Anna. Tears came from another emotion too — is there a name for it? the emotion of being moved to tears by the magnificence of other people? Since I’ve entered the world of cancer (a world that I, like most healthy people, have heretofore studiously avoided), I have been introduced to real human suffering, which makes my own experience look like kindergarten. Whenever I lay on the table staring into the sinister radiation machine (the worse I felt, the more sinister it looked) and feeling sorry for myself, I could look over at the markings on the wall that position the stretcher of a man who is receiving WHOLE BODY radiation TWICE a day.
I am amazed not just by how much suffering people can endure, but by the grace with which most of them endure it. I’m seeing, through my own relatively mild suffering how that happens. First of all, you haven’t any choice. Just by putting one foot in front of the other you walk into and through the pain, one step at a time, one minute at a time, and you can take it. Second, so many distractions get stripped from your life that there is nothing left between you and your full, real, inner Self. All you have to do to find your Self at that point is to be open, let go, give in. (That’s all you ever have to do, any time, but when you’re sick there seems to be less to let go of.) What you find is not some deep, dark horrible secret at the bottom of your soul (which seems to be what most of us fear and expect). Instead you find your Self to be incredibly brave and beautiful — perfectly imperfect as they say in OA. The mantra that came to me the first day I knew I had cancer is back with me again; every day I experience it more strongly and certainly:
I am lovable
I am loved
I am here to love
In case I forget that, a wave of love has been pouring in on me — from many of you and others too. Flowers, herb teas, books, jokes, recipes, phone calls, and wonderful letters come every day. I am often in tears when I read my mail, because people are so loving and so lovable in their sincere desire to wish someone well, whether they are eloquent or not. Even the short, curt messages from people who find it hard to say mushy things do communicate their care. My mail this month is a tribute to the human race. How can we think of ourselves as ugly or selfish creatures, when we produce communications like these?
“Thanks for sharing the news of your cancer gift — and welcome to the club! It seem you are off to an excellent start on a fascinating trip that is most likely going to have many positive outcomes for you (and for all your friends and readers).”
“I went through the same thing back in 1972 and today I feel fine. I know its not too pleasant at the time but the treatments seem to work and its not too long and you begin to feel just fine. Hope everything goes well for you. Get well.”
“I realize I will never be the same person I was before the cancer hit. I have a new perspective. I can’t imagine being a workaholic again; I’ve quieted down; the short-term narrowly focused picture holds little allure. I started swimming; I get massages & facials; I simply cannot take any job just for a paycheck. Somehow, I know there are some things that will take care of themselves. I know my soul is my responsibility and I’ve begun looking into nourishment and care of the spirit.”
“I have shared my body with diabetes for over twenty years now. I consider it my friend. It makes a lot of the rules. I make a few rules that it accepts. We are not enemies — we are careful and friendly companions, while we are sharing the same home.”
“The truth is, I have been slow to write because, after all these years, I’m still looking for your approval. Rather than thinking of you and sending a simple message of love and caring, I’ve been concerned about what you might think of any letter I might send. What a crock, eh? What self-centeredness! How lovely it is to let go of that crap, and for once relate to you purely from the affection and respect I have for you.”
“Hang in the here/now with all the faith and hope you’ve got, plus a little extra from the universe! It may be selfish of us, but we want you on this planet with us for many years to come!”
“Though you may feel your faith deserted you after Anna’s death, what struck me was how quickly and strongly it reasserted itself — how your ability to see the good in people and situations came so quickly to the fore. Your determination, faith, and just plain gumption are an inspiration. Though I’m one of the ‘distant givers’, I’m a distant taker as well — receiving a continuous gift from you. Though the skeptical side of my nature is surprised, I add my prayers to the rising chorus of the many who love you.”
“The authenticity of your communication was staggering and inspiring. I was not only left with a much fuller and more profound experience of you, but also — and I thank you for this — of myself.”
I read these messages, and many, many more, and I know there is something totally wonderful within us all. I wonder why we go to such lengths to hide and deny it. I wonder why, when we organize ourselves into institutions (like hospitals), we stamp out its expression almost completely. I wonder how to mobilize the force of all that love and caring and direct it to the people who truly need it, the hungry and destitute. I wonder how to reflect it back to hurting, brilliant Dr. B. so he can love himself and his job again and see that I don’t want to threaten him, I want to love him.
So many wonderments. So many lessons. I have to say, folks, that this cancer does not feel like a tragedy to me, it feels like an astounding adventure, that is testing me and teaching me as much as climbing Mount Everest or going to the moon. If you ever wonder, as I often used to, how to communicate with people who have cancer — or any other affliction — I’d suggest that you forget about pitying them. Just admire their courage. And express to them your love, in whatever way you can.
Love, love, love to you, Dana
