Beauty and the Breast

Just a couple of years ago, I wrote about how I was feeling beautiful for almost the first time in my life, and wondered how long it would last. At the time, I concluded that losing beauty – or whatever claim to conventional beauty I currently have – might not affect my sense of self-worth any more than having money (and then not) had done a decade before.

While breast cancer does not immediately threaten any vital organs, it does go straight to the beauty / sex characteristics that are considered so very important in women: breasts and hair. If you’d asked me in the abstract, pre-diagnosis, I might have said (in fact, have said), that having large breasts has been a hassle and a distraction (to myself and others), and that my straight, fine hair was never my “crowning glory” anyway.

You won’t be surprised to hear that the real possibility of losing either has not been so easy to face.

During my first visit with Dr Traina, the surgeon who would later operate on me, she mentioned the possibility of total mastectomy. She didn’t seem enthusiastic about this option, and I was puzzled as to why it might be needed: the tumor was about 2.5cm on its longest axis, deeply buried within the volume of a G-cup breast. I said that I would strongly prefer to keep my breast, and to keep it looking and feeling as much the same as possible, nipple and all. (At that point, I already had two small, dimpled scars from the core needle biopsies that had been done.)

We agreed that we would discuss it again during our next, pre-surgery visit. In the meantime, I read further in Dr. Susan Love’s Breast Book, from which I understood that, while a full mastectomy was once considered (by both surgeons and patients) to be the “sure” option, a partial mastectomy (aka lumpectomy) followed by radiation had been found to be equally effective – and you get to keep your breast. At my next visit with Dr Traina, I said: “Given the size of the tumor, a mastectomy seems like overkill.” She immediately agreed, so we were settled on a lumpectomy.

I had no clear idea what to expect from a lumpectomy: how much would be taken out? What would my breast look like afterwards? Of course, there are lots of photos to be found on the Internet, some of which brought me to tears: scarred, twisted breasts with distorted or missing nipples. Still, if my breast ended up looking bad after surgery, many photos showed that it could probably be improved by cosmetic surgery later, and there was plenty of breast tissue to work with.

Lumpectomy

Nov 25: Had the surgery this morning at an outpatient surgery center. Prep started at 8:45. Among other things, I was asked three different times by three different people: “Do you know what you’re here for today?” “Lumpectomy/partial mastectomy in the right breast, and sentinel node biopsy.” The pre-op nurse also initialed the top of my right breast (my initials, not hers). She put an IV into the back of my left hand. I hate having needles in me that way. Always afraid that I will make a wrong move and the needle will come scything out, ripping open a vein and spraying blood everywhere.

Dr T arrived at 10am on the dot; I could hear her joking in the corridor: “What are you watching the clock for?” She poked her head in, said hello, went out. They wheelchaired me into the operating room. I was nonplussed to find it had a sunny view of the parking lot, but they reassured me that it was one-way glass (“We like having the sunshine.”). I got onto the table. My head fit into a cradle, my legs were raised on pillows. The room was very cold, but I’d been warned about that, and the nurse immediately put warm blankets on me. The anesthesiologist (Dr Mirza – once upon a time I studied the poetry of Mirza Ghalib in Urdu) put something into the IV feeder line saying “This will relax you.” That’s the last thing I remember. I awoke in a recovery room with the surgical nurse, who soon brought Brendan in. He had talked with Dr T while I was still non compos mentis. She had found one “interesting” node; that, and everything else she removed from me, has been sent for more study.

By the time I came around, my chest was swathed in elastic bandages to try to keep the breast still – not easy with so large and heavy a breast. Under that was a large pad of bandage and under that, I assumed, a wound closed with steri-strips. There was another wound, also covered, in my armpit where Dr T had removed three (or was it five?) lymph nodes.

They gave me percocet in the recovery room at 1pm, by 4:00 I felt sharp pain where the tumor used to be. Turns out that having largeish bits of you removed hurts like hell. Thankfully, percocet works fast and lasts a while.

Nov 26: Called the doctor about the underarm wound – wasn’t sure it was closed properly, and the steri-strips had come off (it’s hard to keep an underarm from getting damp). My friend M had come over to be with me, so we took the bandage off and she took a photo of it which we messaged to the doctor, who said it looked ok. Lots of bruising around the wound (to be expected), but the wound itself is closed. M and I went out for more gauze and tape to cover it over again.

Some pain, this time mostly in the axillary wound, enough to take a percocet at noon, and to be cranky with it in the evening. I don’t deal well with pain.

Nov 27: The great unveiling: I took off the ace bandage that had been wrapped around my chest since surgery, and took the gauze pad off the breast wound (ripping surgical tape off a nipple hurts a lot!). The steri-strips on the breast are still in place, there’s lots of nasty bruising, but the overall shape of my boob is not much changed. Maybe a little deflated right where the tumor used to be.

Afterwards

Three months on, my right breast has been through several phases. The surgery scars have faded to thin lines. After the first post-surgery swelling of the interior tissues went down, there seemed to be a hollow area beneath the breast scar, where tissue had been removed. Then that collapsed, and for a while there was a vertical indent, almost a fold, visible on the outside of the breast. Now, my breast looks much as it did before, though tissues are still settling inside – I get pain from time to time, deep down where the tumor used to be (I’ve asked: this is normal, can go on for months post surgery).

As for my hair… we’ll talk about that later.

Update, May 24: The tissue around the surgery site has continued to settle, with some episodes of residual pain. Now there’s a definite hollow in my breast where the tumor used to be, and noticeably less mass in that breast than the other one (they weren’t even to begin with – usually breasts are not – but I can’t remember which one used to be bigger).

Note: If you want to do something for me, I still have months of treatment to go, and can always use reading/view material. Here’s my Amazon wish list.


my breast cancer story (thus far)

What Happened After Diagnosis

…continuing the story from How I Knew I Had Cancer

While I was still in Paris, the initial pathology report was emailed to me, but I didn’t understand much of it. I bought Dr. Susan Love’s Breast Book from Amazon (an expert friend had recommended it when my mother-in-law had breast cancer in 2001), downloaded it immediately on my Kindle, and began reading it sporadically.

It’s somewhat creepy that Amazon and Google knew what was going on with me long before almost anyone else did. Amazon started recommending books on chemotherapy, until I removed Dr Susan’s book from my “recommend based on” list. I did not need that reminder every time I opened Amazon.

I decided immediately not to read the section of Dr. Love’s book on causes and risk factors. I have cancer, it’s a done deal. There is no point in beating myself up over “Should I have done this or not done that?”

I later learned that:

“The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).” breastcancer.org

I can’t help either of those things, so… I won the lottery: I’m one of the “About 1 in 8 U.S. women (about 12%) [who] will develop invasive breast cancer over the course of her lifetime.”

Nov 7: Took the train from Paris to London and then to Milton Keynes to visit my stepmother Ruth, whom I hadn’t seen since my dad’s funeral in 2011. Spent the weekend jabbering nervously, but at Ruth’s suggestion I did not do much “homework” about my cancer just then.

Nov 10: Flew from Heathrow to SFO. I began to read Dr Susan Love again almost as soon as I sat down on the plane. I took another look at the pathology report on my laptop, now that I had enough information to begin to understand the implications. Which weren’t great. I was terrified. I had never expected to live to be very old, but… it’s way too soon to die now. Will I be able to do all the things that I had just, cautiously, begun to hope I might?

When in-flight service finally began, I bought and downed two bourbons in quick succession. Watched three movies. Couldn’t sleep. In a torment of fear, rage, misery. Finally got home.

Nov 11: I went to the mammography office to pick up all the imaging and pathology reports.

In the evening I saw Dr Valerie Traina, the surgeon recommended by the gynecologist I still haven’t even met yet. She confirmed what I thought I’d understood from the reports: this is a “fairly aggressive” tumor.

Because most cancers in pre- or peri-menopausal women are hormone-sensitive (grow faster in the presence of hormones), as later proved to be true of mine, she told me to immediately stop all hormones. Joy. This means I can look forward to suddenly, on top of everything else, dealing with all the menopause symptoms that I was taking hormones to control: headaches (sometimes migraines), sleeplessness, hot flashes.

Nov 12-15: Attended USENIX LISA in Seattle, a chance to catch up with the sysadmin / devops sector of the tech industry. Saw a lot of people I know, met some new ones, talked and listened a lot. I felt dazed a lot of the time, only partly due to jetlag.

random thoughts ~Nov 15-17: I’ve joined a sisterhood I never wanted to be part of.

I’m frightened. “Fairly aggressive”. What does that even mean? I read Dr Susan Love’s Breast Book, but it’s overwhelming. My brain shuts down – too much information.

I’m walking into a country I don’t know. Usually this would excite me – I love new places. This time I’m terrified. And I’ll be in this country for the rest of my life.

So many clichés. Brave battle. Victim.

I don’t want my life to be reduced to this.

So tired.

Another phrase I forbid anywhere near me: Raising awareness.

I am fucking aware of cancer. I was aware long before it happened to me. Hardly anyone in the world needs to be any more aware than they are.

Nov 17: Had an MRI to pinpoint where the tumor is, see if there might be any others (there weren’t). Once again lying face down with my breasts dangling through holes in a table. 30 minutes total. Then an EKG, urine and blood samples to ensure that I was ready for surgery. I asked the EKG technician if it all looked ok. “I’m not allowed to tell you, but if something was wrong, I’d be calling for help, not chatting with you. I can say that it’s as if you studied for this test.” At least one part of me is working well.

Nov 18: Slept ok, but very tired. Not sure if I’m tired because I’m emotionally overwhelmed, or vice-versa, or both. Plus I’m probably getting a sinus infection, which won’t help anything.

But the DMV goes on, and having cancer does not excuse me from dealing with banalities like needing to renew my driver’s license.

I’m trying to do my homework: reading Dr Susan Love’s Breast Book, and breastcancer.org, trying to absorb a lot of very complex information about what is happening to me, and what might be done to me. It makes me tired very quickly. My brain doesn’t want to deal with this. I want it to just NOT be happening. But I never get those choices, do I?

I don’t know enough right now to make decisions. But I fear I will never know enough. And the wrong decision could be fatal – or more quickly fatal than some other decision.

This is a life-shattering event. Of the dreams I was cautiously beginning to dream, I don’t know what I may still be able to aspire to.

I’ve been public about some of the traumas of my life to date, and very private about others. I have no idea as yet how or even if I want to talk about this in public. Some people ie my colleagues need to know so that they won’t be let down if I can’t make or deliver on work commitments. Friends and family deserve to know. But there are so many labels and boxes I don’t want applied to me.

I do and don’t want to talk about it. I want to scream and cry. My heart is pounding. My head hurts.

Nov 24: As part of “getting my shit together,” in case of unexpected complications, I went to SF to see my lawyer  and sign docs: a living will (AKA advanced health directive), and a will will (the kind you need if you die). All of this in a fat, green, faux-leather “Estate Planning Portfolio,” which makes my estate look much more impressive than it is.

Nov 25: Surgery


my breast cancer story (thus far)

Brave?

No, I don’t really feel brave in any of this. I’m just doing what follows naturally from these facts:

  • There are people (including myself) who would like me to stay alive for a while yet.
  • The cancer I have is fairly common and not as lethal as some, and it was caught early.
  • Breast cancer research has been well funded in recent years. I therefore have access to treatment protocols that have been tested on other people with cancers similar to mine.
  • My best chance of staying alive is to follow those. No need for new or exotic treatment.

This means:

  • surgery (already done)
  • chemotherapy (going on now until about mid-June)
  • radiation (six weeks)
  • and then hormonal treatment (five years)

All of these treatments together improve my odds such that I should have only about an 8% chance of this cancer recurring in the next ten years. (“What happens after ten years?” I asked Dr L, my oncologist. “We don’t know – we  don’t have any studies.”)

There was never any chance that I would not follow the best medical advice that I could find (and I have some great expertise on tap, both locally and remotely). In the immortal words of Randall Munro: “I take my weapons from science. Because they work, bitches.”

All that being the case: No, I don’t feel especially brave. I’m just putting one foot in front of the other, facing the next task before me, to stay alive for the sake of people I care about. Some of what I’m going through sucks royally, but it doesn’t really matter whether it’s easy or hard. It’s just… this thing I’ve gotta do.


my breast cancer story (thus far)

Rain at Yulara

We expected heat in Australia’s Red Desert, and we got it – but we also got rain. In fact, the area has had record amounts of rainfall in the last four years, and was looking far greener than we expected. There was a brief, intense rainstorm the afternoon of January 1st, with rain on the tin roof reminding me powerfully of the Indian monsoons. Video cannot convey the smell of rain on red dirt, which is nothing at all like a monsoon rain in the Himalayas!

Chemo, Round 1

Disclaimer: This is purely my experience as it is happening. There are many different cancers and many different treatments, and, even for two people with the same cancer and the same drug regimen, reactions can be very different. So, what I’m going through might have very little resemblance to what you would or will or are.

Jan 29: Chemo Day 1

There was only one other person in here when we arrived at 9, by 10:30 or so the room was full (five patients; the three women all have companions with them throughout, the two men don’t). All have different stories, but I’m not yet at the stage of asking to hear them. All but one look perfectly normal – passing us on the street, you wouldn’t know anything is happening to us.

Fantastic nurse, Diana. When she first came in and saw me, she said: “Is this your first time?!?” She seemed so happy that I replied jokingly: “Don’t look so enthusiastic about it!” She explained: “I’ve been doing this [working with cancer patients] since I was in nursing school. Now that I’m near retirement, there is so much more that we can do for people.” I want to hear more of her story. I suppose there will be ample time!

She poked through my skin into the port a short, sharp, fat needle with a plastic butterfly to remove it by later. This didn’t hurt; they give you a lidocaine cream to put on the skin over the port an hour before you go for treatment. I might not have felt much anyway; the skin right over the port has little or no sensation at the moment, perhaps a small nerve was cut during surgery. I don’t like watching a big, spiky needle get shoved into me, but I couldn’t feel it.

I wore a low-cut shirt on purpose, so there was no need to undress any part of me, as you can see in the photo above.

Via the IV tube into the port, Diane first administered one syringe of an anti-nausea med (Aloxi – sounds plausible as a girl’s name), then dripped in two different steroids, again to control nausea. All this was merely preparation, and took about an hour total.

doxorubicin

She then pushed in 50CC of adriamycin, aka doxorubicin, which for some reason had to be done slowly but by hand. Then followed a saline drip, before starting 1000mg of cytoxin, which she timed to last 75 minutes to make it a little easier on me the first time around. Numerous times during these hours I had to go pee, and so did the other patients. All that fluid being pushed into us needed an outlet.

During Infusion

They call it infusion. We’re being steeped in poisons, really. Some side effects are immediate:

  • A metallic taste in the mouth, slightly noticeable during the chemo drips.
  • A nasty chemical taste in mouth, instantaneous but brief, during the heparin injection done at the end to clear out the catheter and prevent clots.

Other than that, nothing particularly noticeable during. We hopped on the wifi from our laptops, looked at work and other stuff, I took notes on the process. I tweeted.

We came home, and I ate a hearty lunch, drank milky tea (yay, my Scottish Breakfast tea arrived from Amazon yesterday). After that I felt very sleepy. Maybe I should nap now as Diane told me I might feel wired later from the steroids.


4pm headache – dehydration? some body aches, which I had before, possibly from lack of physical activity. Hope I didn’t catch a bit of flu before. Can’t think what else explains the persistent body aches.

I’m supposed to stay well hydrated, at least 2 liters of water a day (I drink more than that most days already). One of the side effects of chemo is dry mouth, so I’ll undoubtedly want to. But then I’ll be waking up even more often at night to pee…

6:30 pm (~8 hours after first chemo) Began to feel first twinges of nausea, took odansetron (Zofran). That’s the more powerful of the two anti-nausea pills they gave me, it’s supposed to be good for 8 hours, the other for 4, but I can take them at 4-hour intervals.

Blood pressure 116/72 (cheap home BP meter). It was 130/something yesterday during my pre-chemo doctor visit. The lower level is what used to be normal for me, before I got a cancer diagnosis. Did a bit of seated yoga stretching of my hips – too much sitting around lately. 7:40 I don’t feel nausea (odansetron works fast! yay!) but I don’t have much interest in food right now, either. Slight burning sensation/taste in the back of my mouth. 9:00 hot bath to help with the muscle aches and headache (a side effect of any of several of the drugs), seems to have worked. Now just very tired, but will stay up until 10:30 to take the other nausea drug.

Jan 30 Chemo Day 2


Went back for the Neulasta shot in the afternoon (have been taking Clarityn, which is known to alleviate the bone pain from this, though apparently no one knows why). Brendan drove – I was way too foggy and out of it to be safe driving.

From Rick, email: “Something I read once that was useful to me:  The trite expression about ‘fighting cancer’ misses the mark subtly but fundamentally. The actual truth is that you are the battleground in which cancer gets fought. You are not a soldier. Flattering you by implicitly calling you one is just a category error, and helps nobody.”

I’ve read elsewhere words to the effect of: “Don’t talk about my ‘brave battle’, because, if I die, that will make me a loser.”

Agree on both.

Today have eaten one small apple, one banana, blueberries with vanilla yogurt, and a slice of chocolate cake (30 mins or so ago). Now heartburn. Chewing gum worked a bit, but I ended up going out to buy antacid tablets – something I’ve never had any need for up to now.

8ish Ate rice with olive oil and slivers of parmesan. So far, so good.

A couple of brief but irresistible naps during the day. Trying to drive myself to get the Neulasta shot would have been a bad idea.

Jan 31 Chemo Day 3

No more nausea (so I stopped taking either pill) since about 28 hours after first chemo administration.

Felt good this morning, started doing some work even, then got distracted by this and that. Mentally don’t feel all there.

Meena came by to bring me dal and veggies, which proved to be divine for dinner with rice from the new rice cooker.

In the evening, bone pain from the Neulasta makes itself felt.

Nose feels weird – numb inside and drippy. Apparently I’ll also lose my nostril hairs, which will mean a constant nasal drip. Chemo leaves us very little dignity.

Feb 1 Chemo Day 4

Very sleepy some of the day. Worst symptom at the moment is constipation. The literature says that chemo can cause that, or diarrhea, or both in succession (in either order). So I didn’t know what to treat for, especially having had both recently, including a couple of severe cases of diarrhea (one due to food poisoning in Port Douglas, the other back at home, origin unknown). Took Colace.

Feb 2 Chemo Day 5

Skin/scalp becoming heat-sensitive. Yesterday I wanted to sit in the sun on the balcony, but even with sunscreen on, it felt like my exposed skin was burning immediately. This morning my head was sensitive both to hot water in the shower and the hair dryer.

Ears ringing

At least I’m managing to shit a bit.

Didn’t get enough sleep last night, then slept for maybe an hour in the middle of the day. Now feel jet-lagged, don’t have my usual sense of how much time is passing or what time it is.

Feb 3 Chemo Day 6

Sinus infection coming back (I should have known: depression is a symptom!), have a call in to Dr J about this. (His assistant called back later with a prescription – same antibiotic I took just before chemo for the same infection. If this doesn’t knock it out, I’ll have to drag myself up to the city to see him and get a culture.)

Sleep even worse than what used to be normal for me, then I had to get up for meetings so only slept 11:30pm-5:30am. After a few solid hours of work in the morning, I felt sluggish and unproductive most of the day. It’s possible that I’m too hard on myself about work.

Tea with milk was too hot and harsh, didn’t finish it. Maybe coffee with milk so it gets colder?

Turned the shower way colder than usual, too. Don’t feel quite as burned afterwards as I did yesterday.

Tired, dizzy, tightness/pain in the pit of my stomach. Ate, but that doesn’t seem to have changed anything. I don’t have fever, but I feel hot. At the moment, feet are icy and hands are hot. Other times, both are icy.

(I ended up taking anti-nausea medication again, but it makes me drowsy and stoned.)

Rossella’s flight from NYC was delayed seven hours (due to a medical emergency on the plane before it even got to New York). I ordered food from Munchery to be ready for her; I didn’t have the energy to cook.

Feb 4 Chemo Day 7

Slight bleeding in bladder? and slightly bloody stool. Nausea in the morning, took chlor…, which made me drowsy and stoned for a few hours. Napped 4-5, went to sleep again at 11:30pm.

Feb 5 Chemo Day 8

photo by Rossella Laeng

Woke up at 6:30, felt almost normal til about 11:30. Ate bacon and oatmeal for breakfast ~9am. Maybe I’m hungry now? Ate. Not much help. I feel completely flattened now. 3 loads of laundry probably didn’t help.

Feb 6 Chemo Day 9

Still a bit tired from sinus infection or whatever, but I had a productive work day, which made me happy. My colleagues are working to make me feel included and useful, and I think I’m actually being useful, all of which is a huge morale booster.

Nasty stuff coming out of my sinuses. Not sure if the slight sore throat is related to that, or to chemo, or I’m getting a cold. My propensity to get respiratory infections is not at all helpful in chemo. I’m trying to be very careful about exposure, but of course it’s hard when you spend physical time with people who may be exposed to just about anything at work, school, etc. But it would be just as unhealthy for me not to see anybody at all.

Feb 7 Chemo Day 10

If it weren’t for the sinus infection that came roaring back (I took antibiotics for it just before starting chemo), I might feel just about normal now. Except I still can’t eat much in one sitting, and I still get some acid reflux regardless of how little I eat.

I am losing weight already, down maybe 3 pounds since chemo started. This may also be attributable to having absolutely no interest in alcohol, and not much in sweets.

So far hair is still there, though the texture seems different, drier maybe. It’s long past the point where I would normally have had it cut, so it’s also lank and shapeless but… why bother now? It seems that I can expect it to start falling out in clumps right about day 14.

Feb 9 Chemo 1.11

Very interrupted night’s sleep, as those before – I keep waking up because my mouth is uncomfortably dry, then I have to pee because of all the water I drink. Will borrow a humidifier to see if that helps. Eyes also get dry.

Feb 10 Chemo 1.12

Hair starting to fall out more than usual, though not yet in clumps.Accompanied by a slight burning sensation in my scalp, though I may be imagining that.

Feb 11 Chemo 1.13

Maybe the sinus infection is going. Still fatigued and depressed, but it’s hard to know how much of that is emotional.

Trying to get my digestive system ready for next round of chemo by eating lots of fiber. This achieved a brief bout of diarrhea. Sigh.

Blood work and pre-chemo visit with Dr L. White cell count actually higher than he wanted, probably due to the infection, so the Neulasta dose will be halved this week. I seem to be tolerating everything pretty well, so… on we go. Weighing confirmed I have lost 3 or 4 pounds.

In the waiting room I talked with a woman who has had two cancers (the first must have been when she was very young); she was awaiting results on tests. She taught school for 35 years, and kept up her teaching schedule through chemo over 20 years ago, when it was a lot harder (no anti-nausea meds). While raising small kids. So… it is possible.

Hair starting to come out, a bit at a time, all over my body.


my breast cancer story (thus far)

Deirdré Straughan on Italy, India, the Internet, the world, and now Australia