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 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.