I had told a few people privately about my diagnosis, but most of the world did not know when I had the lumpectomy on November 25th (the Tuesday before Thanksgiving; I scheduled it that way so I could recover over the holiday). I didn’t really want to discuss cancer in public just yet – talking about it to the world would make it all feel realer than I was ready for.

But… social media happened. My birthday fell the day after Thanksgiving, a time when a lot of people are diddling around online while “enjoying the family holiday.” 😉  With birthday wishes pouring in on Facebook, it seemed odd to let people unknowingly wish me a great birthday – which I decidedly wasn’t having. So I posted an announcement on Facebook, and then a small blog post. (There’s more to say about handling cancer and other devastating personal topics on social media – another post sometime.)

Meanwhile, I was resting after surgery and observing things happening to my body, such as hot flashes intensifying: since I had gone off the hormone replacement therapy I’d been using for years, I suddenly had to deal with menopause symptoms. Recovery from the surgery and anesthesia was harder and took longer than I’d expected. A lumpectomy is not major surgery, but the effects of general anesthesia can linger for weeks. And I wasn’t sleeping well as I anxiously waited to hear lab results on the tissues that had been removed.

Dec 1: Learned that there was no lymph node involvement and the tumor was completely removed (clean margins), which is the best possible news right now. They’ll do more testing on the removed tumor to see whether chemo may be a good idea – it was a pretty big tumor (25mm). And I’ll certainly need radiation and follow-up hormonal therapy, but in the meantime I can go to Australia as planned, departing Dec 16th. Time to pack!

Dec 4: Saw the oncologist yesterday, awaiting results of the Oncotype Dx test to understand whether chemo would be useful on this particular kind of tumor. He wants to start follow-up treatment, whether chemo or just radiation, the first week in January, because that is within the “2 to 6 weeks after surgery” start date standard in clinical trials. Which would screw up our planned trip to Australia (Dec 16-Jan 14). I really just need to take that vacation and not think about cancer before the next thing begins, especially if it is chemo. I’d need to be semi-isolated at home for months – my immune system is not great to begin with. Being stuck at home scares me almost as much as the side effects of chemo.

My surgeon doesn’t think we need to worry so much about starting “on time” – the tumor is cleanly out and there were no lymph nodes involved. Waiting for her and the oncologist to discuss it, maybe I’ll compromise and come back one week earlier.

The oncologist showed me Adjuvant Online, running the numbers on 10-year relapse rates with various therapies. I wish I could run it myself – I’d like to know 20 years rates* as well, since I’m only 52. I never really expected to live to 90 (my dad died at 72), but 62 is too short a horizon.

Some random things I’ve learned about cancer so far:

Every cancer is individual. Others who have been through it (or supported someone else through it) may be able to provide support and perspective, but no one goes through the exactly the same cancer you’re going through.

No matter how “good” your particular prognosis, cancer is life-changing. Period.

In my particular case, I guess I technically no longer “have” cancer at the moment – the tumor was removed intact from my breast, and there is so far no evidence that it has spread anywhere else.

But there could be a few cells somewhere that wandered off and are sitting around awaiting some further stimulus to multiply, possibly in some worse place than a breast. So I’ll be having follow-up treatment. The question now is: what kind?

Any follow-up treatment will be intended to reduce the odds of any stray cells reproducing later on. I’ve been told I’ll definitely have radiation followed by hormonal treatment for some years. The open question is whether I should (first) have chemotherapy.

Dec 7: I learned that there was a delay getting the Oncotype DX test started, so I wouldn’t have results for perhaps another two weeks, giving me that much longer to wonder about it.

Fortunately, we had already decided to keep our Australia trip as scheduled (Dr T said: “Go away and don’t think about this for a while!”), departing Dec 16th and returning Jan 14th. Trip planning and booking beyond the tickets to get there had been interrupted by diagnosis and surgery, so at that point we had not planned the whole trip. We had rented an apartment on Newcastle beach for Christmas week, and I had just booked to go to Uluru (Ayers Rock) for three days around New Year’s.

Dec 10: I met with the radiation oncologist. More forms to fill in. Blood pressure etc measured yet again. It was 132/80 – high, for me. It’s been around there ever since I got the diagnosis. Sheer stress.

As always, everyone was very nice. The nurse told me: “This isn’t your grandmother’s breast cancer. There has been so much funding poured into breast cancer now that we have a lot of options. In fact, lung cancer is now the biggest killer of women.” (I donated to Planned Parenthood this year, because every woman should have a chance to catch cancer early, as I did.)

We didn’t know yet whether I’d have to do chemo before radiation, so this first was just a meet-and-greet. All preparatory tests will have to be done just before radiation begins, whenever that is.

There was still a big cavity in my breast where the tumor used to be, though it was already starting to close. Ideally, we could have put a catheter in there and done very targeted radiation, dosing the tumor site completely in just a few days. But… even without Australia plans in the way, you can’t do radiation before chemo, and by the time a decision was made about chemo, the site would likely have closed up anyway. So at this point I knew that I’d be in for six weeks of radiation, with or without chemo.

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* In a later visit, I asked: “What about 20-year survival rates?” “We don’t know,” replied my onco. “We don’t have the data.”

my breast cancer story (thus far)

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.

@BurbDoc All mine do, I’ve lucked into a bunch of truly great physicians. US med system is insane but there are many wonderful people in it.

— Deirdré Straughan (@DeirdreS) November 26, 2014

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.

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my breast cancer story (thus far)

…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

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my breast cancer story (thus far)