Beginnings: May, 2005
Today, three weeks into the world of breast cancer, I must choose: Either I let God be God and allow peace, or I continue spending all my energy researching every paranoia-inducing fact I can about breast cancer treatment and survival.
So far, the latter has run my life.
Will anything be any different if I stop right now and just live? Writing this is a step. Getting a massage today was another step toward stillness. I sense calmness approaching as I rock on the porch swing, typing badly on my laptop. Spirituality and cancer. Spirituality of cancer? Spirituality in cancer? They do go together for millions of people. Now, it’s me.
What if I give up the false control of studying scary books that sink me into depression? Will I die sooner because I missed some detail in Dr. Susan Love’s (really) Breast Book? Not likely. Sally, the nurse coordinating my care, guides my darting anxieties toward a nest by reminding me again I will likely not even need radiation. Maybe even, I pretend she added, never ever get cancer of any kind again. Keep my ovaries. Keep my hair and my life. Keep my daughter safe too.
I have stage 0 cancer, “the best kind,” called ductal carcinoma in situ, DCIS, in my right breast, but at 3.8 centimeters the cancer is too big for a lumpectomy. My breast tissue has always been dense, and as hard for me to distinguish bad lumps from benign as it apparently was for the radiologist who’d been missing the bad ones in my mammograms for a few years now. My surgeon strongly recommends a double, or bilateral, mastectomy. I didn’t have much trouble accepting that; I’d have spent the future worrying about the other breast. There was some anxiety about which type of reconstruction I could emotionally and physically cope with–implants or autologous tissue (meaning my own flesh, from belly or back, could be tunneled around, blood supply intact, to be placed in the role of new mound of “breast”). My options were conveniently narrowed for me by my low tolerance for pain on one hand, and by poor insurance reimbursement on the other. The prognosis is excellent, pending a few details that won’t be known until surgery, like the content of the sentinel lymph node and the margins of the tumor, but even so, it looks like I get to live a long and fairly unencumbered life afterwards.
I heard once that “we are the hands of God’s providence.” Good people are in my court, cooking meals, praying for me and my family, using their medical expertise, or offering helpful tips from the cancer trenches they themselves once occupied. I have even begun to work out so I magically sleep, restfully, until the alarm wakes me. A couple times so far, God and I have sat together in the living room at 2:00 am, just checking in, sometimes with me in quiet tears. I am aware that any serenity I maintain is God’s doing.
My husband, sweet man, proposes we have a quiet dinner the night before surgery. If it weren’t for my desire to be present to him in some way or another, I would rather enjoy being cloistered within myself this night. I seem to have no emotional attachment to my breasts right now. They ache as usual at this point in my cycle. They seem to have betrayed me, to have already left: they don’t feel sexy or aroused, and curiously, I don’t want them to be. I want to forget them and not grieve them all over again. I am in limbo between diagnosis, treatment and recovery and I want a cuddler, not a lover, for now. He is afraid, he says, that everything will change between us, that he’ll be afraid to touch me, for fear of hurting or distressing me. But I think we’ll be fine. I don’t think I’ll resort to undressing in the closet.
It is strange that God and I have a privacy my husband isn’t included in. No one is. It is God in that cloister with me, which seems perfectly right. But I feel guilty. Sometimes I want Bob to be here. I’m not very “there” for him lately. Of course I know this is normal, but his feelings don’t know that. Of all my commitments: marriage, family and work, only work has a leave available. These hours all to myself for writing in the shade are a blessing.
Dr Loren Eskenazi, plastic surgeon and co-author (with photographer Terry Lorant) of the photo-essay book Reconstructing Aphrodite, understands the private sacred space I’m going into in my head. She writes,
The experience of breast cancer is a transformative one. In the modern day world, illness and surgery tend to become a marker or a doorway through which one passes into a new life. This image is in my mind as I prepare my patient and myself for surgery. Whether or not they are aware of it, both patient and surgeon are about to undergo a[n] initiation rite that is almost identical in sequence to any other tribal, religious, or cultural rite of passage. First, there is a period of fasting and cleansing, after which a patient undresses, lays upon an operating room table (similar to an altar) and drifts off into a trance state (anesthesia). Once this has happened a ritual is performed (surgery), and she awakens reborn into a body that is forever changed. She has sacrificed her breast, but through this process often gains much more…
I remember just a few months before this diagnosis, I had asked God to re-inspire me through some midlife issues. I also sensed something was in the mail that would give the needed stimulus. Over my lifetime I’d had two of exploding packages, one at twenty-four when my first husband, my first love, left our new marriage for another, and later, when my sister died of depression (she suicided when she was 21). I knew this cut was not going to be the deepest. But were it to bring a further diagnosis of death in the offing, I’d be paralyzed. Don’t even go there, says Sally in my head.
I told my spiritual director, just before this “mail” came, that I wondered if it would be about my health. I think I’d had a suspicious mammogram by that point. I told him from an authentic place of peace within me that, in a way, if I didn’t think ahead to the impact on my family and my goals, I could accept dying now, because in the last several years I’d finally reached a happy state of being. My life is very good. But I do not feel so confident I’d maintain that serenity if the axe should actually fall! Perhaps what I had was a flash of what could be mine if I worked at opening myself to such grace, such divine flow. Fortunately at this time, I am not to be tested. Yet I will heed the call to deepen the work of listening for God’s voice in all of this and get my own anxieties out of the way of peace.
Just before the mastectomy surgery, with my family and spiritual director there in pre-op, I asked the busy doctors and anesthesiologist and nurses and techs to just stop a minute, put down all their pens and instruments and monitors, and let me pray. I expected them to listen to the excerpt from Reconstructing Aphrodite because I felt adamantly they had better be a part of my team of healers in the spiritual as well as the medical sense. They seemed bemused but cooperated. Having it my way, in at least this one thing, counted a lot for me. Then I was wheeled away…
I got through the surgery, the ugliness and pain of it; I whined and got depressed and cried some and was definitely high-maintenance for my husband for several weeks. My mother flew out to keep my home and look after my daughter, cook, clean, and sit patiently with me. I never appreciated her more, although she’d done that for me all my childhood, every time I was sick. Summer was a wash: no pleasant yardwork, no bicycling. Just personal mending. It’s hard to be patient with mending. I learned to accept the goodness of strangers and friends: meals made, chores done, gifts of books and body work. Hanging out with our great neighbors was a blessing!
Implant surgery for reconstruction took place last week and I look and feel better. There’s more to do, months from now, but I’m over the hurdle. Still having to listen to my body, I take long naps and get exercise and make sure I have chocolate when I want it. Life is good. God was so present I could feel Him, in the pre-op area, afterwards during the pain, and in my family’s presence. He and I had some heavy-duty talks. I wish this kind of healing for every one facing breast cancer. I know many of us will not out-race its devastation. For them, as for myself should cancer return, I pray for peace and trust that healing is always present, even if not for the body.
Six years later, February, 2012
It’s said that if we knew ahead of time all that would happen, we’d lose our courage. I guess that’s why they don’t tell you everything. Or maybe the “theys” just don’t know? I lost something small by comparison to the big losses that narrowly missed me. I would have made the same decision for bilateral mastectomy had I known. But still, I am vaguely angry, at cancer, I guess, that all the nerve tissue that makes breasts so important a part of a woman’s sexuality, is gone. I am numb there, except the weird phantom pain and itch that, when scratched, is in a location a few inches from where I thought it was. I can’t reach it. Unlike implants to augment natural healthy breasts, mine are behind the muscle wall, so that whenever I lift a pitcher of water, a pot from the stove, spade up dirt in the garden, do yoga (that one’s still rare, I confess), my chest muscles pump up like Schwarzenegger’s. I wear higher-cut necklines than I used to. Bras don’t fit the new, half-a-grapefruit shape of my breasts, and until Target recently came out with “bralettes” I wore nothing but cami tops under everything. New collagen nipples make it immodest to go braless (darn). Light tattoo’d areolas looked natural but faded and have sort of disappeared. I suppose I could have them redone, but doubt insurance would cover it; I can’t see myself hanging out in a tattoo parlor with the kids getting their sleeves done. (Could I?)
My husband says I look beautiful, my breasts are beautiful, he is sorry I can’t feel them anymore, and he’s glad he gets to keep his glorious wife. I know I am damn lucky that he feels lucky. I don’t undress in the closet; nudity from waist-up in bed feels less vulnerable these days. It took years to get over it in a locker room.
On the other hand: my college friend L had a lumpectomy and radiation for her DCIS the same time I had my surgery, and in the past ten months she’s been back for: Stage 2b breast cancer and a double mastectomy, radiation and chemo, the lateral or “back-flap” procedure for reconstruction, because the radiation left no option for using her own chest skin; an infected and rejected implant a month later and more surgery to remove it, and another, “tram-flap” procedure using her belly flesh and blood supply this time. She is angry that no one advised her about the pros and cons of the lumpectomy. I visited her last autumn, and the best forgiveness we could come up with was that maybe in 2005 they didn’t know any better. Had my DCIS been a bit smaller, I’d have been offered that minimally invasive surgery too. We hope that the many lumpectomies offered women today, just about seven years later, are a better bet, either because the diagnosis of DCIS and all its details are clearer, or the surgical procedure itself is cleaner. We sigh, and go hear a beautiful choral concert at a lovely old church in Minneapolis, on the tenth anniversary of September 11th. They sing sacred liturgical songs from three religions: Christianity, Islam, and Judaism, a prayer for unity amid dividedness. I think of how divided and outside of myself I felt in my early cancer days, when I read so much conflicting data and somehow got good advice from my doctors, better than my friend L did. I think of 9-11 and know that I have so little to whine about, and yet, so much.
If I may make use of one soapbox opportunity, for the good of others: when you have your mammogram, ask if your films will be read by a radiologist who’s had a fellowship in breast radiology. The woman who saved my life, a radiologist whose name I’ve forgotten, was on duty that day, instead of the man who’d read my previous three or four mammograms. I’d never met him, but she came to meet me personally after my screen, invited me back to an empty exam room, introduced herself and told me she hadn’t liked my films. She took them over again herself, and in a few days performed a needle-guided Ultrasound and, seeing more she didn’t like, performed a biopsy the next week. The lab found the DCIS. At her office the next week, she showed me where the tumor was on the film; I could see nothing but a small white spot in a snowy-looking black screen, like the one old TV sets played after sign-off. How did this compare to my previous screens? I wanted to know. She showed me a similar-looking film from a year before, with a similar tiny spot the regular radiologist had called a mere calcification. I was dumbfounded. It was the day I learned that different radiologists have different “tolerances” for what raises their suspicions, and some take the “watchful waiting” approach. No one had told me about watchful waiting, or asked how I felt about it.
But perhaps I was being my usual over-anxious self? No, nurse Sally told me later: the previous doc had never had a fellowship in breast diagnosis. (I heard Sally was fired later, for telling her patients the truth, I wondered?) The final question and its answer: how long did I have my cancer? My heroine said some breast cancer goes undetected for up to eight years, not necessarily because some doctors have more tolerance than others for an anomaly. She graciously did not attribute her successful poking around to her extra year of focused breast training, or my former doctors’ lack of it. My take-away: Maybe there is no one to blame. Things happen. In 50 years, maybe some Star Trek-like Super Generation medical knowledge will make all this irrelevant. We are prisoners of history. But thankfully, current knowledge is powerful. Go get your mammogram and make sure it’s read by the best and most updated doctor there is. Then say your prayers, get your life the way you want it, and live in each moment as mindfully as you can for as long as the Source of Life, Love and Wisdom can give you, no matter what the diagnosis.
Laura Thor LCSW