Category Archives: bio

How I Knew I Had Cancer

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)

Talking About Cancer

I have very mixed feelings about discussing my breast cancer in public, but I’m going to. For a number of reasons.

I’ve had the initial “By the way, I have cancer” moment with a number of people already. It’s a sure-fire conversation stopper. <wry smile> Sorry, I don’t mean it to be, but in some contexts, with people who genuinely care, it’s hard for me to answer the usual cheerful: “How are you?” – except straightforwardly.

But it is tiring to deliver the same information over and over, especially information that is difficult enough for me to get my own head around. At each step of this so far, and probably all the steps to come, there is a part of me resisting, screaming inside my own head: “No, no, this can’t be happening!”

You won’t hear me screaming, and you probably won’t see me crying. Almost no one will.

My attitude to all crisis situations, no matter who they’re happening to, is to keep my head and deal with what’s before me. I figure, no matter how bad things are, someone needs to be the grownup and deal with the practicalities. Call me Kipling, if you like.

In practice, this has meant throughout my life that I have rarely (if ever) had the luxury of just going to pieces and letting someone else pick them up. I keep on keeping on. I don’t see that I have any choice. My weapons of self-defense are intellectual curiosity about everything (even the nasty stuff that happens to me), and a dark, at times completely “inappropriate”, sense of humor.

So my tone in discussing my cancer may seem strange, detached, clinical, or even cold. Believe me, there’s plenty of molten rage, deep grief, and stark terror underneath. But it doesn’t help me to express those all the time.

What does help is writing, both the discipline of getting my thoughts and facts in order, and the escape valve of telling my story on my own terms. Part of my reason for doing this will be therapeutic.

NB: No one, no matter how close to me, should feel obliged to read any of this if it’s hard for you. You, too, have the right to deal with any crisis in your life (including me) in your own way. Just remember: kvetch outward.

It may even be something of a public service for me to write about this. Cancer is a hugely frightening topic for everyone, and some folks are still reticent to talk or ask about it. A few people in my life (that I know of so far) have been through some version of what I’m going through now, and it’s helpful for me to know that they are there (and, frankly, to know that they’re still alive and coping well). Any frightening experience is a bit easier when you know more about what to expect.

Telling my story may, therefore, help others who may someday have to go through something like this – as, statistically, many of you will: “About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime.” – breastcancer.org

So…I write.


my breast cancer story (thus far)

Care

I am deeply touched (and somewhat baffled) that many people – some of whom I don’t even know that well! – are volunteering to help during my coming ordeal with chemotherapy.

Throughout my life, including childhood, I have rarely experienced being on the receiving end of care. As a daughter, wife, mother, hostess, event planner, and community manager I’ve mostly taken care of others. I’ve always been the strong one, keeping my shit together in emergencies because someone has to be the grownup and deal with stuff. I love being “a really useful engine”, and I can’t imagine why people would want to be around me if I’m not.

So I don’t really know how to be taken care of. Part of me deeply craves it, but a lot of me is scared to be too “needy” or “demanding”.

I hate the “every life difficulty has a lesson for you” trope but, if you like that sort of thing, that’s probably the lesson that cancer has to teach me: learning to trust that others actually want to and will care for me when I need it most, and then letting them do it.

This may be even harder for me than the chemo itself. Being that vulnerable frightens me deeply.

So… many thanks for your offers of help. I will take you up on them. You may have to physically restrain me from at least making you coffee. 😉


my breast cancer story (thus far)

Mean Nasty Ugly Things

I listened to Arlo Guthrie’s – Alice’s Restaurant Massacree around Thanksgiving (as tradition demands). This part hit particularly close to home, and is likely to do so for some time to come:

“…Proceeded on down the hall gettin’ more injections, inspections, detections, neglections and all kinds of stuff that they was doin’ to me at the thing there, and I was there for two hours, three hours, four hours, I was there for a long time going through all kinds of mean nasty ugly things and I was just having a tough time there, and they was inspecting, injecting every single part of me, and they was leaving no part untouched.”

 


my breast cancer story (thus far)

Gratitude

One of the things I have to be grateful for this Thanksgiving is that I still have a mostly-intact right breast. A few weeks ago, as I was finishing up a business trip in Paris, I received a diagnosis of breast cancer. This last Tuesday I had a lumpectomy and sentinel node biopsy, and should be getting more lab results early next week. For the moment, it’s looking as if we caught it early enough that a month of radiation will suffice as follow-up treatment, and that I’ll be able to start that after the month’s trip to Australia (mid-December to mid-January) that had already been planned.

I did fine in surgery and am mostly just tired at the moment, from emotional overload as much as anything – cancer is a scary diagnosis under any circumstances. I have plenty of support at home, especially from my long-time partner-in-crime (and other crises), Brendan. I’ll keep everyone posted as I learn more.

Dec 1 update: No lymph node involvement and the tumor was completely removed, which is the best possible news right now. They’ll do a bit 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!

later update: Yes, I will do chemo, starting pretty soon after I return to the US (from Australia) in mid January.

top: souvenir surgery socks


my breast cancer story (thus far)