Better & Bolder, the Blog

bilateral salpingo oophorectomy

One week ago, I underwent a risk-reducing bilateral salpingo oophorectomy due to family history and BRCA 2 status. I haven’t read many stories online or found books that include stories about other women’s experiences with this decision and surgery. I am publishing this long account for two reasons. One, other women who are considering this surgery or who wish to read about the experience will be able to find and, I hope, benefit from this account. Two, writing things down is a way that I process them. In writing, I learn. By editing an account for publication, I learn even more. So, here goes. 

A discussion of the decision to have this surgery can be found on the December 19 blog post titled “the beneficiary of miracles.” The December 21 post “The River Trail” continues this. The first post on this topic is “Day of the Live,” posted August 24 as I was training to run my first half-marathon.

I met with my surgeon on November 19, 2014. This post begins with the time right after the decision, through to the surgery, and the first week post-surgery. 


The month before

I am working full-time, and that’s where my energy goes. At the end of each day, I eat dinner and then keep eating. I do some work and then, though I feel tired and as if I could sleep, I stay up playing endless rounds of FreeCell and Solitaire on my iPad. I cannot switch off. I often am not in bed until midnight and usually wake by 6 am. This is not enough sleep. 

I cannot muster the focus or will to change these habits. I am numbing myself, keeping myself from processing any feelings about the upcoming surgery and change. I am dismayed that I am unable to deal with the stress better. I feel embarrassed that this is the best that I can do. 


Two weeks before

My term ends and my days open wider. Little by little, my habits shift so that I eat more normally and I put down the iPad sooner. I go to acupuncture and she gives me astragalus herb to make into a tea to drink throughout the day, which I do. I am able to focus on preparing. 

I have the sense that missing the trip I’d planned to Mexico may be for the best. I miss the trip because I had not checked my passport, and it had expired. At first, I am mortified. This is the word that comes to me, a word of death. I ask for support in an email to my current Nia students: come dance Nia with me! I’m still here in Albuquerque, not on retreat in Mexico, and you will make me feel better if you’ll come to class and we’ll dance. They come, and they dance with so much life that I’m transformed. I am no longer mortified.

At home, grounded, I am able to receive nurturing from friends and the Nia community. I’m able to shift into intentional activities that will make this experience more meaningful. What I mean by that is I could treat this simply as surgery, as a remedy performed by the medical community. It is that, certainly. I also treat this as a way for me to heal myself. I imagine that as my ovaries and fallopian tubes leave my body, they take with them any lingering negative energy, the bad thoughts I have internalized about myself, my oldest shrieking fears. I read my tarot cards and am rewarded by a shift from earlier readings with the Death card to this reading with the Hanged Man: I have moved from fear of death to the possibility of transformation. 

This all sounds a bit whoo whoo, and, of course, it is. That doesn’t matter. The cards put me in touch with myself. That’s not whoo whoo; that’s practical. It’s just a practice.

When I miss the Mexico trip, I decide this must be meant to be. I tell Sara that humans are meaning-making creatures. We’ll make meaning out of everything. Why not? Why not assign some greater meaning to the events in my life? When Katie and my daughter both come down with colds after the trip, I decide that some part of my inner psyche knew that I would be healthier staying home than flying to another country for five days. This isn’t so whoo whoo, either. I’ll be clinging to meaning in the weeks to come. Whatever works. 

I decide I should have some kind of ritual, something to mark this important transition. In less than a week, I’ll be in menopause and my ovaries will be gone. I ask a friend to walk with me to the Rio Grande river. We take a path near my home. At one point we stop and sit and talk for a while about our ovaries (hers having worked over time with IVF and both of ours having given us two beautiful children). I have with me a crystal, one I’ve had for years and perhaps it had once been my sister’s (she spent a lot of time with crystals in the year before she died of breast cancer). I am filled with a sense of loss. I throw this crystal into the Rio Grande. 

I also do some very practical things. I research online what surgery will be like. I look for accounts of women who’ve had this surgery and find very few. I make a list of questions to ask the doctor. 

I call the nurse and ask for clarifications: what happens in what order? Will I have a catheter? No. Does it matter if I’m menstruating? No. How long before I can resume intercourse? Six weeks. Really? No. (Whew.) 

I learn that after checking in on the day of surgery, I’ll be called back, going alone without my husband, and I’ll have to pee in a cup to determine I’m not pregnant. The nurse will put in the IV. Then my husband can join me. The surgeon and anesthesiologist each will come to talk with me. It helps me tremendously to prepare to know what I will need to do and the order in which events will happen. 

I modify my diet to help steady my blood sugar. I know that the day of surgery, I won’t be able to eat, and I don’t want to spend that day fighting a desire to eat to calm myself. I am eating a healthful whole food diet, but the stress is preventing me from keeping my blood sugar as even as I’d like. The last two days before the surgery, I eat more lightly, knowing that what goes in must come out, knowing that surgery and medications will slow my digestion. I don’t do as well with my pre-surgery eating as I’d planned or imagined. I cut myself some slack and figure I’ve done pretty good, as well as I could, and good enough.


The day before

On Sunday morning, I wake in a panic. Maybe the Hanged Man card means I am supposed to reject the traditional path, go against the advice I’m given. Maybe it means I am supposed to reject the surgery. 

I begin to bargain. Sure, my sister and father died of cancer, and my mother has had two cancers, and both maternal grandmothers died of cancer — but none of them had ovarian cancer. Chances are that I’ll never develop this particular cancer. I’m not having this surgery. I’m scared of surgery. I don’t want to live without my ovaries. I am no longer numb. I feel fear and I feel loss. 

I bring my fears to Nia class and, sadly, I do a miserable job teaching. This is my last class dancing with my ovaries, and I’m not engaged. After class, I confess my fears to the 20 women there. Maybe I won’t have the surgery, I say, and I’ll be back teaching class on Monday. 

The group works to rescue me. Yes, I really need to do this surgery. I say it’s set for 2:30 pm and the surgeon will be so tired by then. Oh, no, she’ll be energized right after lunch, they counter. I know this is a lie, and they know it is a lie, and we all know that lies are as good as the truth if they help us to be courageous. I am a bit embarrassed that I have hijacked their time to help me prepare. Yet it’s a little miracle for me. Their words, their hugs, their offer to think of me or pray or imagine sending me light or whatever they do to send support — all of this nurtures me deeply, wholly. I leave knowing I will have this surgery, whether I want it or not. 

It is solstice. Some friends come over for our annual night time run on this longest night of the year. Afterwards, we eat, light Hanukah candles, play games. I am blissfully distracted. 


Day 1

I wake at 3 am, which isn’t that unusual, and I can’t fall back asleep, also not that unusual. What is surprising and unusual is that I’m strangely calm. I’m tracking that calm, noticing and affirming it. I have a profound sense that the love, support, and prayers that my friends and Nia community have been expressing for me is the source of that calm. 

I feel a bit of hunger, but it dissipates. I do a few loads of laundry. I go the Apple store and buy a new iPhone. I buy a few things we need at Target. 

I’m home in time to go for a short run. It’s a warm winter day, really beautiful, and I feel steady and even. I run to the bridge over the ditch, a place where each Rosh Hashanah I head with my family. There we throw in bits of bread, with each piece releasing something from our lives that we wish to leave in the previous year. The origin of this is Tashlich, in which Jews cast off their sins. Sins, regrets, transgressions. For us, it may be habits of behavior or mind. It may be a certain laziness. It may simply be a phase of life we are leaving behind, my children casting off not being a driver, for instance, as they turned old enough to get their license. It’s a way of reviewing the recent past and preparing for the near future. It’s a way to get clean and enter the flow of life with a new set of intentions. 

Though I’ve had one ritual a few days before, I feel differently today. Then, I felt the loss, the sorrow, even uncertainty. Today, I feel strong. I feel my bad ass self rise up, the one who is invested in radically good health. The one who wants to live. I gather sand and throw it into the ditch, with each throw affirming my strength and my future, exhorting my ovaries to do this one last thing for me and take with them the vestiges of pain and curses that linger from abuse I suffered long, long, long ago. 

It’s time for my hibiclens shower. I find clean and loose clothes. I grab what I think I’ll need: ID, insurance card, a magazine to read while I wait, earphones, iPhone. My husband, Hugh, has decided he should fast in solidarity with me, and I think this is not such a good idea. I get him nuts and fruit for his long wait. 


Two hours before

We arrive early to check in. Hugh and I look at magazines for a short bit. I am called back and am relieved to be able to easily pee in a cup. I’ve been holding my urine for two hours to be able to do this. I’m joking with the nurse. She takes my vitals and pronounces me super healthy. The IV is easy. I take a Selfie. My husband comes in.

The surgeon stops by. She looks very, tired, and I say so, but she says no, she’s fine. It’s a lie, and she knows I know it’s a lie, and it will have to be fine anyway. She stands in the doorway, answering a few questions, before she goes to prepare. 

The anesthesiologist stops by. He sits next to my bed and patiently answers a ton of questions for me, even the general ones. The first drug I’ll receive is propofol, given to relax me before the anesthesia. I ask, Is propofol related to roofies, the date rape drug? He says no, and I sense that Hugh is thinking, honey, let the man go do his job. I am wondering, though, about memory. Will I know what’s going on? The anesthesiologist explains I will be awake when they wheel me into surgery and there I’ll receive the anesthesia. They’ll put in a breathing tube. After surgery, they’ll wake me to take out the tube. I process this, telling my mind, okay, Mind, you might wake and be startled that there’s a tube down your throat. This is what’s supposed to happen, Mind, and please do not be alarmed. I prepare.

It’s nearly time for surgery, and I’m still calm. This is an unexpected gift. The surgical nurses stop by to introduce themselves. One of them fiddles with my IV and I think, oh, I wonder if that’s the propofol.


One hour after

I am awake in the recovery room. I have no memory of anything past the moment I saw the nurse at my IV. I never saw the surgical room. I have no memory of the removal of the breathing tube. 

I feel nauseous and the nurse gives me a piece of gauze with peppermint to breathe in. It helps a lot. I want to go back to sleep, and I know it’s time to go home. The nurse can’t leave until I do. If I go back to sleep, I could stay there a long time. 


I guess Hugh helps me get dressed. I guess the nurse helps me into a wheelchair. I don’t remember clearly. Hugh helps me into the car. At home, I fall asleep on the couch.  At some point, Hugh gives me an oxycodone for pain and then I think I go upstairs to my bedroom to sleep.


Tuesday, Day 2

The anti-nausea patch has as its major side effect a dry mouth. My throat hurts from the intubation and my mouth is outrageously dry. I want off all the medicines. Hugh thinks I should keep the patch on until I’m sure I don’t need the oxycodone, which can cause nausea. I’m uncomfortable, but no pain, and decide I’ll switch to the prescription Tylenol instead. I remove the patch, though it takes 12 hours for the effects and side-effects to die down. 

Hugh goes to work and my daughter is home with me. My mother stops by. We are talking at the kitchen table. I start sentences and forget, mid-sentence, what I was going to say. I find out later that problems with short-term memory are not uncommon after anesthesia. 

I’m able to move around but I sway a bit as I do. When I’m changing positions in bed, I’m aware of how much I must use my abdominal muscles. I bend down to give the dog some water. I think, maybe I shouldn’t be moving this way. I worry that every move is too much. I’m uncomfortable but not in pain.

I take a shower. I’m nervous to look at the incisions. The patch the surgeon put over my belly button is bloody and ugly, but once we remove it there’s not much to see. The incision is hidden in the belly button. The two side incisions still have their steri-strips. I cover them all with clean bandaids. I have a bruise below the belly button, but it’s already fading. The arnica pills must be helping. 

I check the scale. My weight is six pounds above what it was pre-surgery. That’s a lot of water I’m holding.

I’m not hungry, though I haven’t eaten since Sunday night. I think I should get something in my belly to stimulate the digestive track to fire up again. I have a bit of squash and later some soup. 

I’m fuzzy but functioning. That night in bed, I get a headache. I think this is my body registering that my estrogen has left. I’m sad and nervous. I take some Advil, which doesn’t seem to help the headache, but I’m not in pain and don’t want anything stronger. 

I feel a sense of doom and panic. I think I should take another homeopathic, Aconitum, for this fear and shock, but I don’t have the energy to get it or ask my husband for help. 


Wednesday, Day 3, Christmas Eve

The dry mouth is gone. The headache is gone. I don’t take any more of the doctor’s medicines. But I take a dose of Aconitum to help with the shock and a few of Sepia, too, to help with the hormones. The Aconitum helps, or maybe time does, or maybe it’s a bout of crying, finally, that helps release some of the tension.

My body jerks and spasms when I lay down to relax. I feel as if I’m processing the anesthesia. I say to Hugh that this feels like a memory, like a flash back. My body is shaky. I try to color in a coloring book because I cannot concentrate on reading, but I’m too shaky to color. That’s the word for this day, shaky. 

My digestive track hasn’t come back online yet. Until it does, I am guessing that I won’t be able to relax. I sense the two are entwined.

This day is the most difficult, which I had anticipated so I’m not dismayed even as I’m not happy. Every part of me is not happy. I feel loss and grief. 

By the end of the day, my digestive system rumbles to life. I happily tell my husband I’ve had my first post-surgery bowel movement. I feel more grounded. I will improve from here. 


Thursday, Day four, Christmas

I wake up feeling better. I make ginger cookies. We open gifts and presents. It’s a lovely, fun morning. I make breakfast…and then I tank. My mother sees it happening and tells me to sit. I rest after breakfast but then it’s time to go see a movie. 

This is my first time out of the house. The car ride makes me a bit nauseous. Sitting in the theater isn’t comfortable. The movie is long and can’t hold my attention. I rest at home before dinner, but my energy never returns. 

My belly still feels a bit tight and swollen and I ask my husband to examine it with me. Each day we have checked: no redness, no streaking. I bleed a little each day, and I’m never sure if it’s my last menses or whether it’s from the tugging and clipping that the uterus endures during surgery. Or both. 


Friday, Day 5

I woke several times to pee but am able to sleep most of the night.  In the morning I am rewarded with a number on the scale that is less than when I went into surgery. This means I’m not holding on to so much excess water. My wedding band isn’t as loose on my finger as normal, so there may still be some swelling and water retention. I see a definite trend heading back to normal.

I feel more normal as I move about. I turn from side to side in bed without worrying.

I’m also very tired. I think about doing something easy and pleasant — putting photos in a photo book — and that feels like too much of a chore. I’m thinking of abandoning the beautiful, difficult jigsaw puzzle and starting one that may be easier. I am glad I have many books, though I don’t concentrate well on them.

There’s a metallic taste in my mouth. I think the canker sore is gone. The tinnitus was loud early in the morning but much more subtle a few hours later.

My husband drives me to the library and again the car ride makes me feel slightly nauseous. It also feels as if I must consciously work to take a full breath; otherwise, I default to a shallower one. This may be an after-effect of the anesthesia. The anesthesiologist said all the anesthesia would be gone from my system a few hours after the operation, but I don’t think it works that way. I think it slowly recedes, layer by layer. 

I talk with my husband about the surgery. He says that I was awake in the recovery room and asked to go to the bathroom. I don’t remember that. He says I was nauseous and negotiated with the nurse for more anti-nausea medicine. I don’t remember that. I was awake, talking and moving, and I have no memory of it at all. This is fascinating and disturbing, too. I have sticky residue on my chest, probably from patches placed there. What happened to me while I was not conscious? People touched me, moved me, and I had no awareness and no will. Though I had given my permission, has either my body or mind perceived this as an unwanted invasion? 

I have some mild hot flushes, signs of menopause, not all that different than I had this summer. I am fixated on regret that this surgery happened while I was still in permimenopause, still ovulating and cycling. 

I take a short walk. It’s cold. The acupuncturist, Cindy Wu, had told me to stay warm. I worry that I am letting myself get too cold and I’m going to mess everything up, mess up my recovery and long-term health because I took a 20 minute walk in the cold. 

Dr. Wu told me to drink warm water, not even room temperature, and only warm food. I eat cold pineapple and worry that I’m messing everything up. I eat apples at room temperature but worry raw fruit is too cooling. I realize that 90% of the time, I eat warm foods and keep warm. Oh, maybe even 95%. My diet is super healthy, filled with greens and brown rice and tofu (for the estrogen!). But, maybe I’m having too many nuts? Or too much animal protein? 

You know what my diet needs? Pleasure and compassion. That’s all that’s missing from an otherwise excellent diet. Oh, and flax. Good for the estrogen. 


Saturday, Day 6

Each day, my body and movement feels more normal. My belly feels normal, not distended or tight, though I notice some tightness and discomfort around the incisions. 

I do some chores, such as laundry, and take care of some paperwork. I feel focused. Then three hours after waking, I run out of energy.  I lay down to rest.

For lunch, I don’t have the energy to make the sweet potato soup that I’d planned, so I have a small amount of leftover Chinese food. This is a mistake. My throat tightens and my pulse quickens, as if I’m having a mild allergic response. I am filled with remorse and recrimination. Why did I eat that? How could I add an extra burden to my body right now? I realize that I expect 100% from myself 100% of the time. The expectation is that I’ll make every good choice always. When I don’t, I feel great regret. 

This whole day becomes filled with regret, including regret that I’ve done this surgery. One book I read says our ovaries provide testosterone post-menopause. The adrenal glands will continue to supply some estrogen and testosterone, but not as much as the ovaries do. I have been so focused on the loss of estrogen, that plumping agent, that youthifier. It’s possible for me that loss of testosterone feels even worse. What will happen to my ability to build muscle? What will happen to my yang energy? Hormone therapies are not usually recommended for women at high risk of breast cancer. Besides, I don’t want replacement; I want my hormones, the ones I just gave away. 

I take another walk on the bosque, longer this time. I am anxious and sad and I cry. The cold creeps in. After, I feel a bit sore and fear creeps in. 

I am better after walking in nature, though, which is almost always true for me. I lay down to rest and am amazed again at how tiring it is to recover. 

The day started well but it just kind of fell apart on me. I eat rice cakes for dinner. I watch TV with my husband. I play too many rounds of FreeCell and get to bed a little too late.


Sunday, Day 7

I wake early, hearing my daughter come in from her night out. Is it 3 am? 4 am? I cannot fall back asleep and so listen to the guided healing visualization. I have been doing this every morning, and some mornings it helps me fall back asleep. But this morning I can’t concentrate. I’m hungry. 

My husband comes in and lays down beside me. He is a champion sleeper. The first few days home, he napped more often than I did. I think it is very difficult to be the helper, to be the person who waits. It’s stressful and draining. I’m glad it’s winter and the holidays. We all are supposed to lie around, eating and then sleeping. 

I’m able to fall back asleep for a short while. Again, I have a few hours of energy, which I use to clean out the refrigerator and make the sweet potato soup. Then, I’m out of energy before noon. I rest, though I’m not sure I sleep. I read some more. 

In the afternoon, I force myself to take a walk. It’s not quite as cold, and both the dog and I need some time moving. I’m pleased and relieved that I have enough will to push myself outside for the walk that I know is good for me. I want always to have that will, the one that says what matters is my long-term health and well-being, so today I’m willing to invest. I’m willing to do the work. Besides, most days I love that work. 

I read online on www.hystersisters.com. On their forum, some women write about having no menopause symptoms after the oophorectomy. Others write about problems years later. Many write about going off HRT because apparently for them the side effects outweighed the benefits. I think, each of us has a really individual journey. It’s important for me not to compare myself to others (and someday soon I’ll remember not to compare myself to my younger self either). I think maybe I’ll be just fine without my estrogen and testosterone. I look up foods and habits that support testosterone production and it’s the same old healthy living sh*t I do anyway: exercise, keep stress low, get some vitamin D, eat beans. Got it. 

Some people go back to work a week after having this surgery. I cannot imagine me thriving if I had to do any more than a few chores and feeding myself each day. There’s no pain. I can move around fine. I can focus — just not for long. Resting is the most important way that we heal. I’m thankful that I’m this tired. I’m grateful. 

But, listen. If you’re reading this and you’re facing surgery, would you consider giving yourself twice the time you think you’ll need? Would you consider doing half of what you can instead of pushing yourself to do the most? There’s a time to push to the most. After surgery, that’s the time to find out just how long you can do as little as possible. 

There’s so much to heal as we recover from the anesthesia and the medications, from the shock of the surgery, from whatever anxiety we brought into the surgery, and all of that is on top of what the body must do to repair from the pushing and pulling and snipping and suturing. There’s nothing bad ass or strong or healthy about racing back to work and back to our lives as if nothing has changed. I can say that because I’m 51 and this is what perimenopause was teaching me. 

I do not feel like the bad ass health warrior that I geared up to be right before surgery. Just last Monday morning, I felt strong and positive. Today I feel ordinary, a bit vulnerable, uncertain. There’s still so much to heal.

the River Trail

bosque cottonwoods

One of the gifts of injuring my hip this fall was that I had to stop running for a while. I didn’t like it, but it shifted things for me. 

First, I ate. A lot. Like crazy. My disordered eating returned after a few blissful months of eating without worry. When I was training this summer, I ate for fuel. My blood sugar felt steady. I ate when I was hungry and didn’t feel hungry when I didn’t need fuel. It was just the way it’s supposed to be, and not the way it often is. 

As I ate, and didn’t run, I gained weight. I probably lost some muscle and strength too. I put on fat around my belly, not much, but enough to shift my hormones. Instead of waking several times a night and instead of being unable to fall asleep, I began to sleep straight through the night. If I woke, I could return to sleep easily. Just the way it’s supposed to be. 

My theory is that training hard and bringing my weight down this summer affected my hormones just enough that my estrogen levels went down. It felt as if I were in menopause and mostly that felt okay. I had hot flushes, which can be more common in warm weather. I was no longer crying at, well, everything. I felt more even in general, though the lack of good sleep was horrible. 

Periods often come and go during perimenopause. When I turned 50, I stopped menstruating for nine months until I went on a trip to California to see my daughter. After two cycles, they stopped again. I kind of figured this summer that I was moving into menopause, that once I got to February it would be a full year and we could call it quits. Almost there. I was feeling good while training about getting stronger and leaner. I could do this menopause thing.

The surgeon who will be operating on me on Monday agreed that the training could have affected my hormone levels. Then a few days after meeting with her and setting a date to remove my ovaries and fallopian tubes, and after seven months without one, I got another period. 

It’s like the poor dears were yelling, “wait! wait! we’re still busy! we still work!” And they do. Even after menopause, our ovaries will continue to pump out some estrogen and androgens. We also get some estrogen from our adrenals and manufacture some in our belly fat. We can ingest estrogens, too, through food, such as soy, or through hormone replacement therapy (HRT). 

I’m feeling nervous about a life without estrogen. Do the adrenals go into overdrive to produce more estrogen? Does that lead to burn out? Do the hunger signals go into overdrive to get more belly fat? How much of my youth will I leave on that table on Monday? Will I return to the pattern of haunted sleep that distressed me so much late this summer?

I really enjoyed being thinner and stronger this summer. It felt great and true to me, though it is not a weight or body composition that I’ve maintained most of my life. I wonder if it’s something I’ll have to give up in my post-menopausal world. I wonder if belly fat is my friend. Here’s what I really wonder: I wonder if I can be-friend my belly fat. 

I wish I hadn’t had this last period. I wish I were removing ovaries and saying to myself, well, they were finished anyway. After learning I had the BRCA2 mutation, I spoke with a genetic counselor in late October. I asked her if I should wait for menopause to have surgery, which at that time I thought I could declare in February. I was asking about waiting four more months. She said, no, don’t wait. 

I heard: do this now! I took less than 24 hours to decide — to know — that I was going to do this surgery. I went to my favorite tarot deck to do a single card reading. I drew the Death card. I don’t care that this card may be signaling a metaphorical death or that it’s talking about the fear of death. I asked about surgery to prevent a life-threatening cancer and I drew the Death card. Come on - how would you have reacted?

My distress grew, yet I was in the middle of my teaching term at CNM and the appointment to meet with a surgeon was still a few weeks away. I ate a lot and played a lot of FreeCell on my iPad. If I’d ever learned positive coping strategies for dealing with stress, I couldn’t access them now. My fear and inability to cope with this stressor embarrassed me.

I returned to the tarot deck after a few weeks and this time did a proper 5 card reading. Right before I drew the fifth card, the one that signals the outcome, I paused. This better not be the Death card again. This better not be. It was.

Once I made an appointment with a surgeon, I was ready to have the surgery as soon as possible.  Seriously, we talked on a Wednesday and I wanted to do it the next week on Monday.  I’d do surgery on Monday, have Thursday and Friday off because it was Thanksgiving, and then go back to work that next week, the final week of the term. 

My husband wisely urged me away from that plan, in part because it wouldn’t give me enough time to recover before I would fly to Mexico to lead a Nia/Yoga retreat at Mar de Jade. I didn’t agree with him, but I calmed down enough to plan the surgery for right after the retreat. We had made plans with his sister for our family to go up to Santa Fe for Christmas Eve celebration, two days after the surgery. In other words, folks, I was treating the surgery as if it were, oh, a teeth cleaning. Why wouldn’t I be fine right away? No big deal. 

I think my surgeon, whom I met just once, is wonderfully kind and gentle. She was patient and empathetic. I liked her immediately. I confessed to her that I didn’t feel as if I were going into surgery to prevent cancer; I had escalated to a deep fear that I already had cancer. She and the intern in the office with us both opened their mouths in that Oh expression that means they are so sorry. Just by saying it, I released some of that fear. After an exam in which she felt up my ovaries and pronounced that everything seemed just fine, I relaxed a bit. The fear of death eased.

My term ended at CNM. I made appointments with the acupuncturist who I have seen for years, who’s supported me through depression, allergies, and this scramble through perimenopause. I bought a few guided visualizations to listen to on my iPhone, hypnosis tracks that help prepare a person for surgery by imagining how well it will go. Without the pressure of going to work each day, I had some space and energy to begin processing what this surgery will mean for me. 

The day before I was supposed to fly to Mexico, I discovered that my passport had expired the year before. I was mortified. How had I not checked this sooner? I was shaking, in shock, and also thinking: okay, this was meant to be. I was supposed to stay grounded, here, in New Mexico, and not be flying around and not be adventuring out in the world. I’m supposed to be here, going inward, settling in.

The day I discovered I wouldn’t be going to Mexico, I went out on a run, and as I ran, I sobbed. Crying and running the trail next to the river, I was in despair over the death of my sister more than 20 years ago. My sister died of breast cancer when she was 30 years old, and 20 years on I still miss her, I still wish she were here, I still wish I could have saved her.

Sara, who goes on the Mexico trip with my daughter instead of with me, tells me I’m saving my life with this surgery. I’m going to live to see my grandchildren, she tells me! I should be so lucky. Still, Sara’s words comfort me. Her deep faith in this surgery helps.

Instead of being in Mexico, I teach Nia and the crowd is enthusiastic, devoted, all in. Class leaves us shining. Their support is so deeply nurturing that for the first time in weeks, I feel stronger. We danced to being human, and it works.

Instead of being in Mexico, I meet Pete, Diane, and the babies at the Railyard Markets. Hugh is holding Liv and he looks like a happy grand-dad, as if the twins are a trial run. 

Instead of being in Mexico, I draw the tarot cards at home, and I am rewarded with a reading rich with symbolism of evolution. Instead of the death card, the final card is the Hanged Man. The deck I am using, the Cosmic Tribe, says the hanged man has surrendered to his situation. He is shamanic. He is connected vitally to both sky and earth. He is unconventional. “Learn to trust the mysterious powers of the universe,” Eric Ganther writes, “and they will provide you with the wherewithal to move through difficulty gracefully.” This card feels one step back from Death. It is enough. 

Friends who have been my friends for more than 45 years  Neil and Susan and Nanette  email me long notes with such kindness, honesty, and support that I feel my heart sing with the connection. 

I call the friend I’ve known the longest and I tell Sheri about the fears I’ve had the longest. 

Further down the bosque, I walk with Kate and talk, processing, like this is a puzzle I will be able to solve. 

At Betty’s I sit in a hot tub with Suzanne and it all pours out of me, every fear, all the sadness. I talk and cry and talk until I’m calm again. 

My husband allows me to cry and tell him every irrational thought and fear and he doesn’t even try to fix me. 

I walk with Diane to the river’s edge where we thank our ovaries for the hard work they’ve done for us. I say goodbye to mine. I feel loss, as if I’m losing someone I love. I feel gratitude. I do not feel ready.

I wish I could back out. Hugh says, no, it’s a done deal. I say, no, not until the anesthesia takes me under. But, he’s right. I’ve just gotten scared, scared of knives cutting into me and cameras probing me, alien-like, entering through my belly button. I’m scared of pain and nausea, scared of blood. Scared of becoming suddenly old. 

Cindy Wu, the acupuncturist, tells me to stay warm for two weeks after surgery. No cold, no cold food, stay warm. I imagine she is telling me to go into a cocoon for those two weeks, a gentle swaddled existence, while I heal from the surgery and I do the important work of adjusting to life without the hormones from my ovaries. 

I’m thankful I didn’t rush into surgery, even as difficult as this anticipation is. I’m thankful even more that I chose the time of year that invites me to stay inside, cuddled up. I’m grateful I had to wait long enough for the surgery that I could realize how important it is not to jump back into work — that is, not to jump backwards into my life. 

What happened before and who I was and how I have been all is prelude. It is not the whole of me. It is, I suppose, the long and complicated first act. What a glorious second act this can be. I wonder what will happen. I wonder what’s next. 

I began this long story by saying that not running had produced some gifts, the first of which was belly fat. The second is that once I began running again, I wasn’t running for time or distance or improvement. I started back from the injury with a few miles and took it easy. Sometimes I’d run two days in a row because that’s what the schedule or weather allowed, and with shorter, easier runs, I didn’t need a recovery day between runs. Instead of spending a lot of time warming up, I could do a quick warm up and head out the door, knowing I’d be back in 30 minutes, 45 at the most. I didn’t need as much recovery time after the run. It all became simpler, shorter. 

Running resets my metabolism. If I’m stressed or I feel as if my blood sugar isn’t steady, a run corrects that. On a run, I do some of the deep emotional and spiritual work that I don’t otherwise do on a regular basis. Running is therapy and it’s transformational. 

The surgeon says I’m not supposed to run for a month after the surgery, which seems like an awful long time to go without this particular therapy. I imagine how it will feel to run again late in January, still cold and dark but not quite as dark as now. I imagine myself coming out of that cocoon and running just a short bit, enough to get started again, the place from which I’ll grow strong again. I will be, truly, a different person in a different body with a different life ahead of me. There are some moments that this change scares me deeply. There are other moments that I think, blessed be.  I think, bring it on. 

the beneficiary of miracles

This is a story about being a Jew.

This is a story about loss.

This is a story about living in a time of miracles.


One in 40 Ashkenazi Jews has a mutation on either the BRCA1 or BRCA2 gene. These genes, when they work the way they should, help suppress tumor growth. A mutation in the gene increases the risk of certain cancers, especially breast and ovarian cancers. 

I am the one in 40. I have the BRCA2 mutation.

BRCA1 breast cancers are more difficult to treat and more likely to reoccur than other breast cancers. The lifetime risk of breast cancer for a woman with the BRCA1 mutation is as much as 65%, which compares to 12% for those without a BRCA mutation, according to cancer.gov. The same site says 45% of women with the BRCA2 mutation will develop breast cancer by age 70. 

I can’t quite wrap my head around these lifetime risk numbers. Is cancer.gov telling me I have roughly a 1 in 2 chance of developing breast cancer? The information sheet that I received with my DNA test results says this mutation may confer a risk as high as 84% by age 70. What the heck does “may confer” mean and why is the stated risk so much higher? 


I spoke this October with a genetic counselor about my risks and options as someone with the BRCA2 mutation. 

There are several reliable diagnostic tools to help detect breast cancer early. The standard of care for a woman my age and situation is to increase monitoring. The counselor suggested I add in a MRI once a year to image my breasts and check for cancer. MRIs do better at detecting cancer than mammograms when breasts are dense. As we get older, our breasts become less dense, and women at higher than average risk of breast cancer no longer need the MRI, just the mammograms. 


I’ve been getting my mammos grammed since I was in my late 20s. This is where I talk about loss.

When my older sister was in her late 20s, she found a breast cancer. Despite a mastectomy, the cancer recurred and then spread. She died ten days before her 31st birthday.

This is why I have been checking my breasts every year, and this is why I decided to test my DNA for the BRCA mutation. My father also died of cancer. My mother has had several cancers. Both my parents’ mothers died of cancer. Though I live a healthy lifestyle, I’ve kind of always thought it was simply a matter of time before my genetics caught up with me.

The other risk I discussed with the genetic counselor is the risk of ovarian cancer. In the general population, 1.4% will develop ovarian cancer. For those of us with BRCA2 mutation, that risk is 11 - 17%. The information sheet I received with my genetic test results put my lifetime risk of ovarian cancer as high as 27%.

It seems as if there’s a far greater chance of not developing this cancer than there is a chance of developing it. That’s also an optimistic way to view my situation, and if there were reliable ways to detect ovarian cancer, I’d do with my ovaries what I’m doing with my breasts: I’d let them be and check up on them real often.

 

I’d been pretty optimistic that I wouldn’t have the BRCA gene mutation. I swished, spit, and sent it off and forgot about it. I wasn’t a tiny bit worried. My optimism, pessimism, or realism, it turns out, do not affect my reality.  My risk of having the mutation was 1 in 40. It doesn’t matter that there were more chances I wouldn’t have the mutation than chances that I would. This is where probability meets reality. There is a 100% chance I have the mutation because, well, I have it. So I can play the numbers and say that I’m more likely not to develop this cancer than I am likely to develop it. But I’m not much of a gambler.

The problem with ovarian cancer is that it’s a nasty, foul, deceitful SOB of a cancer. Unlike with breast cancer, there are not any reliable diagnostic tools, which means it’s most often found when it’s stage IV and already has spread to other organs. It’s difficult to treat. It’s deadly. 

Ovarian cancer, as far as researchers know, is not affected by lifestyle or at least not much. Eating right and exercising regularly will ward off many diseases — including the ones, such as diabetes or even breast cancer, for which I may have a genetic predisposition based on family history. But my healthy living won’t make a difference in whether or not I develop ovarian cancer.

To speak with the genetic counselor, my husband and I had to go to the UNM Cancer Center. Driving to a cancer center is sobering. Once there, I had to check in and receive an orange hospital band, as if I were a patient. In the waiting area, we saw a woman younger than I am, and we wondered why she was there. I wondered if others saw me and wondered why I was there.

The genetic counselor was both clear and emphatic: the best way to deal with the risk of ovarian cancer is to remove the ovaries and fallopian tubes (the tubes in some cases might be the origin of the cancer).

I asked if I should wait to have the surgery until I was in menopause. I said maybe it would be better this February or March. She looked straight at me and said: don’t wait. 

It took me 24 hours to choose to have the surgery, a prophylactic bilateral salpingo oophorectomy. I think my decision in part was made by how sure she was, this counselor who’s seen so much ovarian cancer and the women it has affected. My decision came from my gut, from my fear. My decision came from love, my love for my family.


On December 22, I’ll return to the cancer center to undergo the 45 minute outpatient surgery. This is where I talk about miracles.

It’s a miracle that scientists can now read our genes, tell us where we came from, and point out the problems we might encounter - and our children and children’s children, too. 

It’s a miracle that doctors can insert a tiny camera through my belly button and into my abdomen, and this tiny camera allows my doctor to look around so she can then remove my organs through two other tiny incisions. It’s the miracle of life. 

I feel nothing but lucky. I am healthy, with support from friends and family, and a job that offers medical insurance. Knowing how much greater risk the BRCA1 mutation confers, I feel lucky to be BRCA2. 


I plan on getting a tiny bit whiny about surgery and about the weeks after surgery in which I’m not supposed to exercise aside from walking. Let’s not confuse my feeling scared and sorry for myself with feeling unlucky. I know how blessed I am. I know I’m the beneficiary of miracles.