…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)

You might also like:

One Year On Treatment Roundup: August & September Care Mean Nasty Ugly Things

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)

You might also like:

Treatment Roundup: August & September After Surgery Twenty Years of Being a Woman at Tech Events Care

Learning that I had cancer may be the scariest thing that has ever happened to me.

My first personal encounter with cancer (that I can remember) was the wife of someone my dad worked with when I was about 13. We were invited to a party, she was there with her obviously-bald head wrapped in a colorful silk scarf that hung down like a ponytail. Someone told me, in a whisper: “She has breast cancer.”

I got the strong impression that I should feel very, very sorry for her, and that she was very brave to be at a party when she must be feeling very ill, though she looked as if she was enjoying herself.

Some time later (months? a year?), I was not surprised to hear that she had died.

Because that’s how it was: you got cancer, you died. Probably after a long, agonizing “battle” involving surgeries, chemotherapy, and other horrors.

Whatever we see as children, we tend to assume that’s “how the world is”. Years of experience may never quite override our instinctive assumptions based on the “natural facts” that we learned when young. So, for my generation, a diagnosis of cancer feels like a death sentence – even though we know that much has changed in recent decades. Cancer treatments and survival rates have improved tremendously. As one nurse said to me: “This is not your grandmother’s breast cancer.”

Nonetheless, cancer still feels like “the big one”. The thing that, from a certain age, you do routine tests for, and each time heave a sigh of relief: “Whatever else may be wrong with me, at least I don’t have cancer.”

Well, now I do. It’s almost a letdown. I no longer have to worry about the worst possible thing that could happen to me: it has!

Of course, there’s always a next worst thing. “I have cancer, but as long as I don’t have to have chemo, it won’t be too bad.” Guess what? Chemo starts next week.

So, what’s left? “I have cancer, and I’m about to have chemo, but as long as I don’t end up dying young in long, drawn out, terrible pain…”

Here’s hoping.

Physically, I have no cancer symptoms, nor any reason to have them. I may not even have any cancer left in my body: the tumor was removed intact, and there is no evidence of spread. (So why am I doing chemo? Statistics: to reduce the chance of recurrence.)

Emotionally, this has been a hard ride ever since the biopsy in October. I’d already been through a cycle of suspicious mammogram and biopsy years ago, but this time there was something I could feel. As much as I denied it, to myself and others, this time it seemed much more likely to be cancer. Of course that thought was with me constantly. I was standing on an emotional precipice. Receiving the diagnosis was the push over the edge. I’ve been falling ever since, with occasional moments when I do manage to forget all this and just enjoy my life. Being in Australia for a month helped with that, but cancer takes a lot of forgetting.

If you talk to me about cancer, I will immediately go into in fact-sharing mode. I’ll tell you everything I know, which feels like it’s already quite a lot. But this knowledge has been difficult to acquire. The topic is so frightening that, every time I start reading about it, my brain just wants to run away and hide in a corner. I can only take in so much before I freeze and choke and nearly start crying. I guess this is a common reaction: almost every medical person I’ve dealt with has said: “I know this is a lot for you to absorb right now.” (They have everything printed out, so you can read it again later.)

While I want to understand what’s happening, and keep control over what’s done to me as far as I can, learning about cancer has not helped me much in dealing with the associated emotions. Cancer treatment has improved since I was young, but it’s still bloody awful. And you can’t refuse knowledge about even the uncommon side effects, because you need to watch out for their symptoms, e.g.: “In rare cases, people getting this drug have had their spleen grow very large or even rupture, which can cause death. Let your doctor know right away if you begin to have pain or swelling…”

So, for the moment, I feel emotionally exhausted, while paradoxically physically ok. The latter, of course, is about to change, as the doctors start treating me to within an inch of my life.

For those who have asked what they can do for me – which I very much appreciate! – I can always use more reading material. Suggestions for Kindle books and other miscellaneous items from my Amazon wish list can be seen here. I’ll also very happily take suggestions for free Kindle books that I might not have found for myself yet on Amazon or Project Gutenberg, as well as any other good sources of free ebooks.

Jan 2017: I was given the all-clear by my doctors last June – it seems that I did beat cancer.

my breast cancer story

You might also like:

Treatment Roundup: August & September Twenty Years of Being a Woman at Tech Events Mean Nasty Ugly Things The American Caste System

One common reaction to saying “I have cancer” is that people want to know, though they don’t quite like to ask, how I realized I had it. Here’s how it went:

April 2014: Had my yearly mammogram (“difficult breasts” mean I’ve been having mammograms, and often follow-up ultrasounds, at least yearly since age 35). All clear.

Late Sept/early Oct: (I was on a business trip in Stockholm) I had been having a lot of breast tenderness, which seemed to be getting worse over the last few months (most likely menopause-related). Now I felt a different pain, deep in my right breast, as if I was being stabbed with a pin. It wasn’t constant, but it was persistent.

I don’t do routine breast self-exams precisely because my breast tissue is so dense and lumpy – it’s hard to know which lumps I should worry about. But I have a good general idea of what my breasts feel like and, when I was trying to locate the source of this new pain, I could feel something new in my outer right breast, a lump which felt sharper and more defined than the surrounding breast tissue.

I made an appointment with a gynecologist in my new hometown in the south bay. I believed there to be no history of cancer in my family (later learned I was wrong about that), so I wasn’t particularly worried, but there were other things I wanted to talk about anyway (like my damned periods coming every 16-18 days! With cramps like I had in high school! Menopause sucks).

Oct 20: The gynecologist suggested I schedule…

Oct 24: A mammogram and ultrasound. The mammographer saw some calcifications and denser areas he didn’t like the look of, and scheduled me for…

Oct 30: Core needle biopsies on two areas of my right breast. An in-office procedure, but nasty. I lay down on a table with my right breast dangling through a hole, whose hard plastic edge cut into my ribs. There’s a mammogram machine under there, which squeezes the breast as usual. They take an image, and then you have to stay in exactly that position (the plastic squeeze plate holds your breast) so the doctor can guide the biopsy needle to the correct area. He injects local anesthetic, then goes in with something that makes a noise like a drill but he said was a vacuum. I was turned to face the wall; if I had not met the doctor during my previous visit, I would have had no idea what this person doing this horrible stuff to me even looked like. To distract myself, I contemplated linguistic questions, like the fact that the very kind and competent assistant (Russian ?) spoke perfect English, but used no articles: “I will call doctor now.”

NB: In any medical offices where you’re going to spend significant time, make sure you like the nurses and technicians; you’ll be seeing more of them than the physicians.

The first area hurt when he stuck the biopsy needle into it; perhaps the anesthetic hadn’t fully reached that deep. I was tense and scared when he started the second one, but that time it didn’t hurt. He took more samples from the second area, perhaps because of what he had already seen in the mammogram and ultrasound.

Nov 1: I flew off to the OpenStack Summit in Paris. My breast hurt inside and was bruised outside from the biopsies, a constant reminder that maybe there was something going on that I should be worried about. I became more worried as the week went on. But I had lots of good distractions: I was busy with the conference, colleagues, former colleagues, and friends from across the tech industry, and an old friend who came to visit from her home in Switzerland. And, of course, Paris! Though I didn’t have time for tourist stuff – just lots of walking, talking, good company, food, and wine.

Nov 6: I finally spoke with the gynecologist. (“I was about to call you,” she said.) One of the biopsied areas was clear. The other wasn’t. She said: “It’s very early, very small, we’ll be able to take care of this easily.” [NB: It turned out to be not very small at all.] She gave me the name of a surgeon back in California. I called and scheduled an appointment while I was standing outside a restaurant waiting for colleagues to join me for dinner. I was still in shock, so I told two teammates and one completely extraneous Ericsson colleague what was going on (they were very good about it). Ate a great meal and drank a lot of wine.

The next week, when I was back in the US, I met with the surgeon…

In sum: I have been having mammograms as often as doctors tell me to, but that’s not how this cancer was found. This tumor apparently grew quickly, within six months after a clean mammogram. It announced its presence through pain.

“About 5 percent of all target zone breast pain is cancer. So it’s worth having your doctor check it—if only for the relief of being sure…” – Dr. Susan Love’s Breast Book

…I didn’t read this until later. In fact, the websites I checked say that pain in the breast is “unlikely” to be cancer.

5% is unlikely, true, but if it’s a different kind of pain than you’ve ever felt before, pay attention.

That pain persisted until the tumor was removed – I could feel it, a slight burning sensation, as if something with small, sharp teeth was gnawing away inside.

Next: What Happened After Diagnosis

my breast cancer story (thus far)

You might also like:

Treatment Roundup: August & September What Happened After Diagnosis My Potter Predictions Dental Trauma