Category Archives: Breast cancer

Diversion: Houses and herons

My grandfather, who has been dead almost 60 years, lives on in the house he had built, a historic building that carries his name. And he lives on in Google, in the many archived electronic versions of his writings on neurosurgery. Leah told me she’d Googled him a couple of years ago, and a few entries had popped up under his name. When I Googled him a couple of days ago, I intended to see if I could find any internet images of his house. While there were no images available there was information about the house, and there were also pages and pages of his work, archived electronically, as well as writings about him. A paperback called In Memoriam: [his name], [his birth and death dates], caught my attention. It was from Amazon.uk.com, and it could be had for the princely sum of almost $50 (with the appalling exchange rate for the euro), and on an impulse, I bought it.

After I paid, it occurred to me that despite the moniker “paperback,” it’s probably his obituary, out of the newspaper, and if so, I already have a copy, folded neatly into the Bible I inherited when my mother died. Coincidently there were four Bibles, and I knew which one I wanted, the one that had belonged to my great-grandmother, with her name neatly inscribed on the front, and the date, 1887. I was afraid my sisters would want that one too, and I have never been one to argue over material things. However it was the oldest, the most worn, with yellowed pages and a ragged cover, and so I got my wish. I inherited, too, a silver dragon bowl from China (there is a fine story behind that bowl and the book my great-great aunt wrote about my great-great grandmother’s missionary trip to China, which has had a surprising resurrection, and is available still in multiple copies through Amazon.com — not reprints, I suppose, just version still extant, still circulating some 80 years later.)

But back to my grandfather and the Google search: As I scrolled through the list of entries under his name, I found a geneology of my mother’s father’s side of the family going back centuries, and made by my cousin (the son of my grandfather’s brother). I think the most common girl’s name in the family is Elizabeth, and that’s interesting because my daughter’s middle name is Elizabeth (but named after my great-aunt on my mother’s mother’s side of the family).

And there, in that family tree, was my mother, her date of birth, and her date of death, and a live link that led me to the last letter she wrote before she died, which I typed for her because she was paralyzed. And there was her voice again, so bright and filled with life, apologizing for writing a “Dear everyone” letter, relating her life since the last communication as though her journey through the cancer were just one wild and never-ending adventure, joyful, with a certain happy ending.

Beneath her letter was Dad’s notice that she “has been asleep for a week now,” written a day or two before her death, and the words, “Her passing will leave an unfillable void in my life, she had such enthusiam and interest in all things and people.” It was followed by his brief and factual notice of her death, sent the morning she died. Beneath that was a notice from the Inflammatory Breast Cancer listserv, noting her passing.

I read it, and then I took Zeke to school, and on the way back from dropping her off, as I drove the exit ramp to the road that would take me to work, I looked left, and saw a heron on the winterbrown grass, so close I wouldn’t need a zoom to get a decent picture if I had had my camera — which I didn’t. I thought of Loren’s heron pictures, how clear and precisely they capture the details of the great blue heron, the curve of the neck, the long decorative feathers that sweep down from the back of the head, the cool yellow eyes. I could see all those details as the heron turned his head and watched me drive on to work, and then the details blurred as I felt strange tears of surprise and grief and joy, all at once, fill me and overflow.

Kooky

“Kooky,” they say. “Crazy. Believing in superstitious nonsense.”

It’s alright. I’ve been called worse. I’m used to that attitude, being the daughter of an atheist physicist. And for me, it makes no difference anyway. The heron’s repeated appearance since my mother was dying could be a series of coincidences (extraordinary, I’d say. Why did it show up on her deck railing while she was dying, stay there until she died, reappear over Hedgebrook while we were burying her ashes, prompting the director to say, “Oh look, the heron. We haven’t seen it in weeks”? Why did it stand on the roof of my parents’ house the Thanksgiving after she died, turn to face me and dip its head in my direction, then turn again and fly away? Why did it fly onto the beach just feet away from Zeke and her friend, and chatter at them? Why those appearances and a dozen more to my sisters, my mother’s friend, me?) Or it could be synchronicities. The label doesn’t matter. In the end, it’s just what it is. How I interpret it is up to me.

I know the heron I saw on the deck while she was dying is not the same one that flew over Hedgebrook or that appeared in Ireland or that dipped low over Sadie a few weeks ago when she was on her first walk after her illness. It’s not as if my mother’s consciousness animates those lovely birds, not as if she is reincarnated in a single bird that flies all over the world. It is something else, something I see as a synchronicity that invokes the beauty and mystery of the world. And that a physicist would dismiss as just a coincidence doesn’t bother me, because coincidence or synchronicity, it is simply what IS.

What matters to me, to the four of us girls, is that the heron binds us. When I said I knew the heron’s appearance was a sign that the weekend would go well, the words represented my understanding that all of us, all four of us, watched the heron watch my mother dying. Because of that, and because of the heron that flew over Hedgebrook as her ashes were being buried, we all see that particular bird as a representation of my mother’s spirit. That it appeared once again the first time we were all together since she died, to look directly in at the table where we all were sitting, comforted us, allowed us for the first time to shed the anger and resentments of that difficult time.

Coincidence? Maybe. But who cares. What the heron does to us is real.

When I first started RCIA, almost three years ago, I was sure I would never finish. I went as a concession to my friend. A pamphlet handed out at one of the first meetings described faith in a series of steps. The first step is the fairytale world presented to children, with a literal personal God looking down on tiny humans in fatherly love and choreographing everybody’s lives. At the top of the journey towards understanding is the place where people like Jesus and the Dalai Lama and Gandhi reside(d). People who recognize that Buddhism and Catholicism and Islam and Shinto and whatever are essentially the same thing. Buddhism is an atheistic religion. Catholicism puts faith in a personal God. They seem on the surface to be totally incompatible, but they are not. Atheism isn’t incompatible either, though most atheists don’t or can’t see it.

So when literalists laugh because I invoke the heron as the spirit of my mother, because I recognize that all four of us sisters understand the heron in different ways (Ruth May, right now, has a far more literalist understanding of it than I do), it doesn’t bother me. I’m not by any means close to the top of the scale of understanding. Not close to enlightenment, whatever that means. Not close to anything but my own understanding, which is clouded simply because I’m alive and human and filled with memories that get in the way of equanimity and fearlessness. But I do know I’m not crazy.

___

Warning: Those who abhor superstitious nonsense, read no further!

I didn’t mention, in the last few posts about the heron and my sister’s birthday, that on the night of her party, my mother’s friend pressed an envelope into my hand. “For you,” she said quietly. “Happy belated birthday.” The envelope contained a pendant from China, from where she and her husband had just returned. China is significant to me because I have a personal connection to it through my mother’s grandparents, who lived there for 40 years. Mum always wanted to go there, and she, Dad and their friends made plans  for a trip the spring before she died. The tickets were purchased and the bags packed when the trip was called off because of SARS. A few months later the trip was rearranged for September and Mum began planning again. Only a couple of week before she was due to leave, she fell down in a hotel in Vancouver one night. The cancer had spread to a part of her brain that controlled movement and paralyzed her left side. Mum, Dad and their friends canceled the trip, and it was only this fall that my parents’ friends were finally able to make the trip they’d so looked forward to with Mum and Dad.

When I looked at the pendant, I saw a piece of green stone, jade I suppose, with Kuan Yin wrapped about it in metal. Between Kuan Yin warm against my chest under my dress, and the re-appearance of the heron just a few moments later at the birthday party, I knew everything was going to be just fine.

Disloyal

I feel disloyal, writing about Mum. Don’t speak ill of the dead, right? And anyway, what I say could be misconstrued. I don’t mean anything to be a judgment on her. She was wonderful in multiple ways. When she died, people who barely knew her, who had met her only once or twice, stopped me to say how she had touched them. She lived lightly, easily, after the struggles of her difficult past. Horrendously difficult, really, if I add up all she suffered. She overcame.

Was it the “Right Speech” facet of Buddhism that taught her not to speak ill of my biological father, though there was much she could have said about him? I didn’t know Dad wasn’t my father till I was 12. My last name was changed by court order to my Dad’s last name, as was Rachel’s, so that we wouldn’t be recognized as illegitimate in a country that forbade divorce till 1997. When I found out Dad wasn’t my dad it was a relief for various reasons, but my mother said little about my biological dad. She could have said plenty: Drug dealer, alcoholic, abuser. Her reticence made a difference. Right speech. Am I not speaking right now in recalling my biological father? I am talking facts about him, but there are other facts too. His mother loves him. Perhaps he is kind to her. I cannot take it further; I have not talked to him since 1988.

I  wrote more about Switzerland yesterday, about my mother after her mother died, but I can’t hit “publish.” She loved all of us in the best way she knew how. It was a complicated love, shaped by her ambiguous relationship to her parents. What surprises me is how parallel our lives have been, in a way — though mine was far easier than hers as a child. But later, her diagnosis, then mine five weeks later. Treatment at the same time; her mastectomy the day before mine. The hope that came afterwards, when 2000 rang in. We were living the fantasy that both she and I would be in remission for the rest of our lives. I got lucky. She didn’t. Maybe if it wasn’t for her dying I wouldn’t be here now, but there’s no point speculating. When her mother died when she was 24, when mine died when I was 38, we both went crazy in our own ways. Dad waited for Mum to find her way. Greg didn’t. That’s the difference. In fact, Greg was finding his own way long before I met Nada, before we knew that Mum’s cancer had metasticized.

What I saw when my father spoke, before I knew about Greg’s lover, was that my father and Greg had their parallels, ways of being in the world that Dad pointed out to me. What I see now is that my life and my mother’s also had parallels. Our lives ran down the same road for a while, but they have diverged. Both my mother and I went crazy at the deaths of our mothers. But Dad waited. Greg didn’t. Dad loved Mum till the day she died, and loves her memory still. Greg was carrying on a secret correspondence with a former student long before I met Nada. He filed for divorce and three weeks after I signed he told me he was getting married to his secret love.  It’s the way things go.

I don’t even want to publish this. I don’t know where it’s going. Stella wrote about repetition some days ago, and what am I doing now but repeating parts of what I knew before, but only dimly. Finding my way through to a new place, recognizing on the way the signposts. This I knew. That… oh that is new. That tree. That moment of connection.

To be continued… maybe.

Black and white

The light spreads its warmth across my neck, presses gentle fingers into my nape. I look up, at the water stain on the white paper taped to the ceiling, then down to my red-painted toenails, the paint chipped, a legacy from an evening in the Azores when Zeke and I ate alone together in our hotel room and she painted my nails to comfort me.

“Turn to the left a little,” R.C. says. “That’s right. Beautiful.” The flash snaps, shadows scramble into different corners for a moment, then settle back into their quiet place. “Good,” R.C. mutters, playing with the light settings on his camera. “You’re beautiful.”

I don’t feel beautiful. I feel fat and ugly. I feel lumpy and riven. Gravity pulls down on the fat I gained on those antidepressants three years ago, weight which I just can’t seem to lose. My skin dries, grows flaky and inelastic. When I squat, it bunches behind my knees. “Stretch out that leg,” R.C. says. I stretch it, and the stretching pulls my skin taut. Perhaps this photo will be beautiful.

I first became his model in 1999, eight years ago. A couple of black-and-white prints of me hang on the wall in his studio. One is a full body shot of me with one breast, taken three days before my second mastectomy. The shadows obscure the spot of my mastectomy scar. My right breast stands up pert and tight, hard nippled. The other is a shot of me on my back, no head, no lower legs, just the “landscape” of my body, the swell and dip of my belly, and the straight clear lines of my mastectomy scars.

R.C. is a professional photographer. For years he took pictures of weddings and cute little girls and horses and dog shows. Now he teaches photography at a local college and sells the occasional photograph from the occasional showing he does in various local galleries. He’s sold a few pictures of me, I know, hopefully to homes that will appreciate that a mastectomy doesn’t mean destruction of beauty or loss of femininity. My feminist colleagues mutter words like “cutting off the head objectifies the model,” but for me having the photos taken was a healing act, one in which I recognized that I could still be attractive even after an operation that too often was labeled as “maiming.”

R.C. has been at me to model for him again recently. It’s been a couple of years. The last set of pictures were fine, but I can’t shake the image of myself as fat and covered in lumps in the wrong places. “You’re beautiful,” R.C. says. “Let me show you what I have in mind.” He’s downloaded some images from the internet, abstract pieces that are pure light and shadow, where images of human bodies are mere suggestion, often genderlesss. In others the human body becomes a backdrop for patterns of light and dark. I think of the landscape pictures he takes: sweeping, swirling lines of wheat fields, some places fallow, some stubble, some ploughed, some still alive with heavy-nodding wheat heads bending before wind. They are the land as art, as a place for light to pool and in which shadows linger. His abstract nudes are similar.

“I want real women,” he said when I first arrived this morning. “Not Playboy models.”

I shook my head. “I can’t do it,” I said. We started talking. He’s a friend too, someone who’s known me for nigh on 20 years.

“What happened to you?” he asked. “I’ve been trying to figure it out. You used to have so much confidence. Even after losing your breasts you had confidence. And now….”

And it’s true. The divorce, my painful, difficult relationship with Nada, the destruction in my family as my mother was dying, all of these have shredded me. Every day is a fight to lift my head and feel that I have the right to be alive and to live with joy. And Nada, Nada of my heart and of the night, is at the center.

Yesterday I broke it off with him. I want more than friendship with benefits (on his terms), which is all he is willing to promise. I want love. I want a future. So I called it quits. Now I need to focus on loving Zeke and repairing the damage I’ve done in letting Nada hurt her (there’s a story there, an argument, a pitting of daughter against daughter, that maybe I’ll tell one day, maybe not. But it was enough, along with the ambivalence of his love, for me to see the way clear to walking away). Now I need to find my way back to the peace I know hovers before me. Maybe R.C.’s black-and-white pictures will help, the sweeping light caressing curves that are little more than suggestions, capturing the stillness of shadow, the quiet of waiting.

Synchronicity and no reason to whine

I got a surprise email today, from StellaPlainAndTall, asking for access to the private area of the Blog-City blog that I abandoned when it wouldn’t accept comments or let me give people permission to access the members-only area. I had just discovered her blog about two weeks ago, through another blogger on whose site I sometimes lurk, and I admire her for her grace in hard times — a kind of grace I wish I could emulate. And then, bingo, there she is (well, symbolically, OK, all you literalists) in my email, asking for permission to read my blog. I directed her here — Hi Stella — and then got all shivery about writing again. I’ve been so sporadic, so disinterested, though I still read my favorite blogs most days. I wonder sometimes why I quit something I really enjoyed. Lack of time, lack of cohesion in my mind, desire to read. These things all. Yes.

Also the opiate of happiness at times, and in contrast, the despair that still threatens — though never as destructively as two years ago during the antidepressant fiasco. Still, I don’t wish to depress people. When darkness looms, I dive into books, escaping through the words of others. Why are my whinings worthy of airing in an open forum?

There are decisions I must make. I line up the pros and cons and move them around constantly. Next week I have an appointment with a genetics counselor in Big City. I saw her with my mother eight years ago. At the time she said, “Don’t ignore any symptoms.” What she meant was, “You’re primed for cancer. Catch it early.” When I didn’t ignore symptoms, my primary doctor became frustrated and stopped responding. Now I have a new doctor, not senile, and much nicer. (No, he isn’t the type to prescribe strong anti-psychotic antidepressants for a 13-year-old with headaches, which is what my former doctor tried to do!)

I’ve been to the doctor only twice in the past two years (odd for someone on cancer watch for the past 11 years of her life, used to blood tests and chest x-rays and ultrasounds etc at regular intervals). The last time I went only because I needed asthma medication for the Azores. The time before because I hadn’t had a pap smear in three years.

These days I do my best to ignore all symptoms. When I have a smokers’-cough coughing, wheezing asthma attack and people say “Can’t the doctors do something about that?” I tell them “no” and change the subject. I’ve never smoked, but sometimes I sound like I’ve smoked two packs a day for a lifetime. And there’s really nothing the doctors can do. “You have asthma and bronchitis,” they say. “Use your inhaler.”

But still, last month, when I went in for asthma medicine, my new physician suggested the genetics counselor. It’s almost time for me to consider an oopherectomy. I had melanoma at 31, breast cancer at 34. My female relatives have a discouraging habit of dying relatively young of breast and ovarian cancer (at least my mother was reborn as a heron!). So the genetics counselor thinks I ought to have my ovaries out. (Or so she suggested eight years ago.) And now I have to decide. But god, no ovaries, and no HRT either — unless they have some alternative? How can I face precipitous menopause when I’m such a whiny bitch anyway? Wouldn’t it be better to risk dying of ovarian cancer?

Truth is I’ve been in a study for the past eight years for women at high risk for ovarian cancer. Ultrasound every year. Blood draw every three or four months. (Cough cough, the last blood draw was over a year ago and my CA125 markers were elevated and I was supposed to go in again for another blood draw to eliminate ovarian cancer and did I? No siree.) The study nurse is on my case. I want to go. But driving three hours and working and being a single parent to a teenager and trying to care for my dad long-distance now that my sister is mother to a newborn… well. It does wear one down. Some days I can hardly move. Yesterday, when breathing was a challenge because of the cruddy air, and I was tired, and I had to advise at work and film Zeke diving so her coach could point out her good dives, and my dog had to go to the vet for cheet grass in her ear and I had to get an affidavit notarized at the bank because someone charged two airline tickets to Dubai on my credit card and now the card is canceled and Citibank is investigating fraud, and then I lost the affidavit (before eventually finding it again) and Nada is stressing stressing stressing over not having a job… and I was just tired. Wanted it all to stop. And I’m not even working officially yet. Yep. How is there time for being pre-emptive about health, I want to know? How?

OK, you got it. The whine. Fecking whinging, as the Irish would say. I’m a whinger. Oh, and did I tell you the love lease on my horse didn’t work out and I had to quick-quick find him another home and that — God knows — was stressful, because I prefer to pretend he doesn’t exist. Thinking about him brings a veritable fountains of salty water to my environs. How did it come to this?

So there you have it. Total lack of grace. A blubbering whingeing whiner. And in the midst of all the whining, yet still that marvellous trip to the Azores. Who gets to experience something like that? And in doing so, who has the right to whine?

So I haven’t written much. Things are either too easy, or too dang hard. Nothing in between. And I know I lack grace. So I just swallow the dark-cloud words, take the dogs for a walk, and read the blogs of people like Stella, who give me something to aim for. Thank you, Stella. And please don’t stop writing!

Reminders: Breasts and recognition

Being breastless has advantages. The most obvious is that one feels lighter, unencumbered. Activities like riding a horse aren’t accompanied by the need to find tight sports bras or experience one’s breasts bouncing up and down in time with the trot or the canter. And my breasts were small. Imagine DD-size breasts in the midst of rigorous activity? I’m not saying that for some people, the advantages don’t outweigh the disadvantages. I’m just saying that for me, I’m rather partial to the feeling of lightness and freedom that accompanies being without breasts.

But that is not the biggest advantage for me. The other is the relative absence of pain. I was reminded of that today, when I woke and stretched and felt a sudden stabbing in my right armpit area. Here’s the deal. Breast flesh is not limited to the fleshy rounded objects we usually think of as the breasts. It stretches around the body, into the armpit area, even up the arm a little. That’s why a bilateral mastectomy does not guarantee freedom from re-occurance of breast cancer. (My mother got inflamatory breast cancer on both breasts a year and a half after her bilateral mastectomy.) And breast flesh is subject to fibrocystic condition (or disease, depending on the era). I could have been the poster mama for that unpleasant condition. My breasts were so dense mammograms could barely penetrate them. And they were so lumpy a practicioner would have had a hard time finding a really dangerous lump. I was lucky my cancer was found as early as it was.

But lumps and dense cancer-prone tissue (yes, they’ve just figured out there’s a correlation between dense breasts and cancer) are not the only problems of fibrocystic breasts. Another problem is pain. Sometimes severe. There were months when I was in pain for three out of four weeks of my cycle. And not just mild tenderness. I’m talking “Don’ttouchthatithurts!” reactive screaming at any slight pressure. I’m talking holding my breasts with my arms (and trying hard to be discrete about it, which isn’t always easy) as I’m walking. I’m talking going to the doctor to see what I can do about it because I can’t do what I love, ride my horse. The doctor said, as is standard, “Take Vitamin E, and stop drinking caffeine.” Which would have been fine if I didn’t take Vitamin E and I did drink caffeine. Back then, I drank only one cup of weak tea in the morning, and no coffee. And I even gave that up for a couple of months with no luck. Now I drink the occasional latte in addition to my morning tea, and sometimes I drink two cups of tea, but I’m still pretty light in my caffeine consumption. And you know what? I still get that signature pain, only now it’s in my right underarm only in a good month. That’s right. I can tell that my surgeon was more careful to get out as much of the breast flesh as he could in the removal of my cancerous left breast than he was in the prophylactic removal of my right breast. If I come up with breast cancer in my right side, you know who to go after!

Ever since my surgeries almost eight years ago (wow!), I’m reminded monthly of one darn good reason for being without breasts. Some months the pain is a hardly-there tenderness that lasts for a day or two. But others, like this month, it’s more than two weeks of obvious discomfort in my right armpit area, and a slight tenderness in my left. And when that happens, I’m thrilled-and-delighted to be without those objects that long ago served their purpose in breastfeeding my daughter (with much difficulty, I might add, and interestingly enough the cancerous breast never did yield much milk. Coincidence? Or early warning?).

That doesn’t mean it was easy to lose them. It was excruciatingly hard. That doesn’t mean I don’t feel insecure about myself sometimes in this breast-obsessed culture. I do. I wonder how many men might accept a woman without breasts, since those fatty globes seem to be such objects of adoration. But I’m happy to be reminded of the advantages of being without them, and to be able to recognize that now, most of the time, I’m without pain, and that when I have pain, it’s not what it once was.

Perhaps even more significantly, the monthly tenderness reminds me that life is short and nothing is guaranteed, a reminder to live well and to love.