Chapter 2: The Diagnosis

I walk into my second chemo treatment on Friday feeling terrible--I have a cold, got almost no sleep the past two nights, and my head is pounding so badly my eyes won't focus. I am clutching a long list of questions in my hand to ask Ann, my nurse.

I walk out an hour later feeling tremendous. Headache gone, I'm jazzed--getting wired is one side effect, whether of the chemo drug, doxorubicin, or of the anti-nausea drugs, I'm not sure. I go home, send the kids off to friends' houses for the night, and head out to a Society of Professional Journalists event with a couple of friends.

I have fun. There is a sense of unreality buried down deep, but on the surface I'm having a great time, talking and laughing and being with people I like.

But in the back of my mind always are the questions:

I had a bad headache after my first chemo, what can I do?

Ann says my choices are to change the anti-nausea drugs or to take Tylenol before the chemo to head off the headache. The anti-nausea drugs are working for me, so I don't want to mess with them. I opt for two Tylenol.

Can I drink wine during the holidays?

A glass or two of wine is fine, Ann says.

I'm tired from my cold. Can I take sleeping pills?

We agree that sleep is important, and Ann calls in a prescription for Ambien. I've never taken sleeping pills before my cancer, but I love this stuff. Instead of lying awake for hours with wheels whirling in my head, it's a long, slow slide into dreamless sleep.

What are the weekly blood draws for--what exactly are we checking?

Ann gives me a chart that shows the blood factors measured each week and fills in my counts from the blood draw I had an hour ago. The chart shows my white blood cell counts, my red blood cells, and my platelets, which aid clotting. At week two, everything is fine. My white cell counts are actually up, probably from fighting the cold.

I feel quietly horrified at the thought of watching my blood cells killed off, week by week, but the chart lets me know what's going on. And who knows, maybe I can talk those cells into staying strong, staying with me.

A Warning Signal
The day after my chemo, Saturday, I decide the house is too quiet and lonely without my bird Spot, who died last week. I know it's too soon to buy another bird. So I head out to the pet store and come back an hour later with a bowl of goldfish.

I buy a classic, round bowl, three fish--Spot, Fin, and Feather--and a chubby black and orange snail my son Akira dubs Slow Poke. I get a little castle for the fish to swim through, live plants, and lots of glass marbles for the bottom of the bowl.

By Wednesday, my cold has turned into a sinus infection. I pull out my sheet of instructions. "Call if you have an infection." It's the day before Thanksgiving, and the cancer center is frantic. The nurse asks if I have a GP I can go to for something for my sinus infection.

"Nooo," I respond, thinking there is no way I'm going to let anyone but my oncologist treat me for anything, no matter how small. She'll get back to me, she says, and calls back later with a prescription for an antibiotic.

Now I'm taking: doxorubicin, my chemo drug; zofran and decadron, two anti-nausea drugs I take through an IV; Axid and Compazine, two more anti-nausea drugs I take by mouth; the sleeping pills; the Tylenol for headaches; and now the antibiotic Zithromax for the sinus infection. It's a drug store around here. I line up the bottles and look at them for a long time.

The cold, and the sinus infection that followed, was a warning. My blood counts were not low enough after only two rounds of chemo for the infection to be a serious concern, but I need to avoid germs in the weeks to come as my ability to fight infection declines. Later on, a simple infection could kill me.

I open door knobs with my sleeve, use my own pen to sign checks at the grocery store, wear yellow rubber gloves to wash dishes, and look at my children with newly suspicious eyes: What germs are they incubating to pass on to me?

I have my own hand towel and drinking cup in the bathroom. I buy extra-soft toothbrushes to protect my gums.

How I Got Here
How did this happen to me?

Well, there were no signs or symptoms. I never felt a lump. My doctor, a Seattle ob/gyn, didn't feel a lump when I went in for my annual exam last August. But she did recommend that I have a mammogram.

I was not inclined to agree. I was busy. I'd had a baseline mammogram at 40, and I wasn't convinced I needed another one at 43. I'd read the conflicting recommendations on whether mammograms were necessary--read "cost-effective"--for a woman in her 40s. And I had no risk factors. A vegetarian since age 16, I ate reasonably well, exercised when I could, and had no family history of breast cancer. But my doctor persisted, and I agreed, although I left her office thinking she was one pushy broad.

I go for my mammogram at a clinic down the hall. I don't really mind mammograms. All that squeezing and pulling isn't pleasant, but I don't really mind it.

Then, a few days later, there's a message on my answering machine: "Please call us about your mammogram." When I call back before 5 p.m. that same day, the woman who'd left the message isn't there, and I am told no one else could tell me why she'd called.

I spend a sleepless night.

The next day, I'm told that the clinic wants to do some more mammograms, close-ups, to check some calcifications. "Fine," I say. I try to get more information in the few days before the next mammogram, but the people I talk to are vague. Calcifications are just clumps of calcium in the breast--sometimes a problem and sometimes not. No one wants to use the word "cancer" with me.

I have the follow-up mammograms and read whatever I can find in the waiting room about calcifications. I learn a new term, DCIS, or ductal carcinoma in situ. I read about DCIS, which is really confusing. Some sources call it "precancer," so why are we so worried? Some sources say it's fine to do nothing, just watch it closely to catch any break-out from the milk ducts where it's contained.

But the doctors at my clinic recommend a biopsy of the calcifications. Confused, worried, caught in a whirlwind, I agree. They give me a sheet explaining the procedure, which is a stereotactic biopsy, also called a mammogram-guided core needle biopsy.

Let me tell you, that sheet does not explain the procedure. And it in no way prepares me for having a dozen holes punched into my flattened breast with a device just like a hole punch. It's awful. I thought a biopsy was a little skinny needle that took a few cells. The tissue they take out looks like 12 little worms. I feel really sick.

I ask if all this punching won't release cancer cells into my bloodstream. "That's a good question," responds the doctor, sounding surprised that I would ask such a thing. She goes on to give me a "yes, but" answer that I don't really understand.

I'm scheduled to come back in a day or two to get my test results and talk to a surgeon. Why did they schedule me to see a surgeon before we even have the test results? I ask myself that question, but I'm too overwhelmed to ask at the clinic.

When I show up to learn the test results, the woman who checks me in says I'm scheduled for an ultrasound. An ultrasound? I just came in to get my test results, I reply, no one told me anything about an ultrasound.

"Is it OK to do the ultrasound?" she responds.

"Well, yes, of course, but no one told me," I say. So we do the ultrasound, and a second biopsy, with a skinny needle this time. I'm at the clinic for an hour before I see the surgeon, and so far no one has told me the results of the earlier test. However, no one makes eye contact, a bad sign.

When I finally see the surgeon, she tells me that I have extensive DCIS. Plus I have a lump--a tumor--which didn't show up on the mammogram but was found during all the follow-up testing and has now been submitted for testing. I'll have to wait till next week for the results. Still, she says, I'll probably require a mastectomy.

I don't like this clinic, and I'm not ready to accept the recommendation that I have a mastectomy. I schedule an appointment with a well-known surgeon at the PolyClinic in Seattle for a second opinion and with the Cancer Center at the University of Washington Medical Center for a third opinion.

@ Jeanne Sather 2006