Infusion 2 – This time, it’s all about the hair

Big infusion day 2, and I’ve still got my hair.

First stop, the phlebotomy lab on the first floor. I’ve always thought that “phlebotomy” is strange word for such a simple thing. According to the Oxford English Etymology Dictionary online, it comes from the Greek, “phlebos” or “vein” and “tomia” or “cutting of.” Latter iterations from old French c. 1400 render it “phlebotomye” or “blood-letting.” Maybe the murkiness of modern word “phlebotomy” is OK after all. I doubt that with all their other stresses, cancer patients would be thrilled about always stopping first in the “blood-letting” clinic.

But there’s one thing you can always count on these places, the technicians who pierce your veins here are good, good. They do this all day, and when they stick the needle in, it registers barely more than an pinprick. Not at all like the agony of having a med student try to start your IV. (I’ve believe in academic medicine, but med student IVs are the worst.) So before each poison party, the smooth-handed phlebotomists take several vials of blood to make sure I’m healthy enough to endure more chemo. One of them, with the purple cap, will go for a complete blood count (CBC): the levels of red blood cells that carry oxygen, the white blood cells that fight off disease and the platelets that help blood to clot. I believe the others, with yellow caps, will be tested for various other things—calcium, sugar, sodium, phosphorous etc.—that can soar too high, or dip too low, in reaction to chemo. If your blood counts are too out of whack, your chemo may be postponed until your body heals enough for another onslaught.

Up on the second floor at the Breast Care Center, Tara, one of Dr. Rugo’s nurse practitioners, tells me my blood counts are fine. She says I’ve been too stoic about side effects. They can up the dosage of one med to keep the cold sores down; they can add Nexium to ease the stomach backflips, begin a muscle relaxant to calm down my endlessly sore right shoulder, start over-the-counter meds now to head off constipation and its opposite. She shows me some massage techniques to loosen up the pleat in my left breast and the lymph node incision under my left arm.

“We can help you,” Tara says. “But you have to CALL us.” Husband Pete nods in long-suffering agreement; he’s been nagging me to call for three weeks. I hadn’t thought any of these things were serious enough to merit a call. Chemo is supposed to be about suffering, right? Tara and Pete do not think this is funny.

Tara does nod approvingly when I tell her I’m hiking, but she frowns when I tell her how much. “An hour and a half straight up and straight down might be overdoing it,” she says. “Remember chemo is cumulative. By the sixth infusion, you’re not going to be able to keep this up. Are you crashing afterward?”

Well, come to think of it, I have come home and taken a nap several mornings in the past week. Tara suggests doing just an hour of less strenuous hiking each day. And she urges me to do several shorter walks each day during the icky first week after each infusion. “You want to get moving every day, even it it’s only a little bit,” she explains. As she winds up the appointment, she writes several new scrips and a knock comes on the door.

It’s Alexa, the clinical trial coordinator for the DigniCap freezy machine. She cradles a Nikon camera. I’d almost forgotten that this will always be part of my chemo routine: the hair fashion shoot. They need to track changes in my hair, to see if chilling my scalp down to 5 degrees Celcius will constrict my scalp blood vessels enough to keep out the chemo drugs and preserve most of my hair. I hate having my picture taken, but try to be a good sport as Alexa snaps shots of my part, the hair line on my forehead, my hair in profile and frontal views. My oncologist, Dr. Rugo, breezes in to take a look. She beams.

“Your hair looks great!” she says.

“Well, it’s a little dirty…” I say. “I didn’t see any point in washing it if it’s going to be under the freezy cap today.”

“It’s doesn’t look dirty,” Dr. Rugo says encouragingly. “You’re going to be a poster child!”

Fifteen minutes later, as I shove my head under the sink spigot in a chemo bay on the 5th floor infusion center. I try to get every bit of my hair as wet as possible so that the cold cap stays cold, and try not to imagine what the elderly couple in the chair next to mine are thinking of this routine. They look a little aghast. I wonder if someday, infusion centers will have more discreet salon sinks for people like me.

Alexa puts the disposable cap over my wet hair and starts spraying it. Then the nurse comes by and says there’s a delay in mixing my chemo drugs. Chemo drugs are expensive—drugs like the Herceptin I’m taking cost thousands per dose—and many go bad quickly. If held for more than a few hours after mixing, they may no longer work. So everyone’s chemo gets made to order. Hold off on the cap, the nurse says. Alexa, Pete and my childhood pal Clair sit around and chat for an hour waiting for the hospital pharmacy to mix my drugs.

Finally, we re-wet my hair and Alexa tries to get a good seal between the silcone cap with cooling channels and the neoprene beanie that goes over the whole kit. We’re both feeling paranoid about the seal. If the cap isn’t snug, then my scalp won’t get cold enough and I’ll go from poster child to baldy-girl. Apparently, another patient in the trial had an air bubble in her cap and had hair fall out where the cap didn’t make contact. We jam one neoprene cap on, then peel it off and try another. We fuss about whether we feel air bubbles or not. We try another cap. I tug on the sides over my ears. Alexa runs her hands over the cap again and again, just to be sure.

Then I pop a Vicodin in preparation for the DigniCap deep freeze. Remembering that I took two last time, I take another Vicodin. This is not such a good idea. During the last infusion, there was space, maybe an hour, between the two Vicodins. This time, I take them too close together and my brain turns to ethereal fuzz within minutes. Pete goes off to pick up our daughter from an overnight field trip. I think Alexa and I talk about her med school interviews and cancer research and DNA for a bit. A nice, transgendered woman comes by to ask if I’d like hospital lunch. I remember her from last time—and her disappointed look when I made a joke about hospital food—but I make some noises about falafel from down the street. I’m not sure. Clair says I’m pretty funny when dopey on double Vicodin. She vows to bring a tape recorder next time. I’ll have to take her word for it, because I don’t remember too much.

The drugs come up. The nurses match the birthday and patient number on my wristband to the date and numbers on the drug bags. Then they hook them up. One hour. Two hours. Taxotere, then Carboplatin. Then an extra hour of cold after the old-line chemo drugs. I’ve still got about a half hour of Herceptin when the cold cap comes off and my brain begins to clear.

Clair and I start talking to the woman in the infusion chair across from us. She’s wearing a kerchief over her head, and is knitting a cozy angora cap. “It’s amazing how cold you get when you don’t have hair,” she says.

A doctor, she works in the clinic at San Quentin Prison. We talk about prison policy and recidivism and the desperate need for education in places like San Quentin. Then we talk about her cancer. She’s 36; it’s breast cancer. Diagnosed in early August. Her cancer is incredibly reactive to estrogen, so they took her ovaries. With no more ovaries pumping out estrogen, her disease has less chance of recurring. She thought about trying to preserve some eggs, but it just felt too complicated. The decision was hard, she says, but she and her partner will probably try to adopt. Because she’s quite young, they did a double mastectomy. She has a port for the chemo on her right side. She doesn’t like the port, she says. The little plastic circle that hooks easily to chemo IVs is constant reminder of her cancer. How she could forget her cancer given all she’s been through, I can’t imagine.

I’ve just pulled off the DigniCap and borrowed Clair’s travel brush to gently tame the wet tangles. I suck in my breath a little when I see how much of my hair comes out in the brush.

I look up at the young doctor and her knitting. “It’s going to work,” she says.

“I hope so,” I say, suddenly worried.

“It’s going to work,” the young doctor says again. “I had hoped to be part of the trial you’re doing, but the protocols are incredibly strict.”

“Yes, I know, you can’t be more than stage I,” I say. “But my husband says he has been noticing hairs on my pillow lately.”

The young doctor pulls off her kerchief. She used to have thick, dark, shoulder length hair, she says. Now she is completely bald except for a few dark whiskers on the top. “This happened in the second week after my first infusion,” she says. “One day, it just started coming out in clumps. I’d lean against something, and leave a bunch of hair. It all came out in a day or two.

“It’s weird how uncomfortable it can be when the whiskers rub against anything,” she says as she pats the stray hairs. “I found this pattern for the kerchief on the Internet.”

As she ties the kerchief back on her head, I feel guilty for obsessing so much about my silly hair. I’ve still got most of my breasts, I have a kid. Her road is much, much rockier than mine. And yet, she still finds a way to be generous. “Don’t worry,” she says as Clair and I leave the infusion center. “It’s going to work. I know it.”

I thank her, but don’t give her the big hug I feel like giving her. Breast cancer sparks intimacies between people who don’t really know each other. Since we’re barely acquaintances, I hold back, and simply wish her luck in the warmest tones I can muster.

I think of the young doctor many times a day now, as I find a few hairs on my pillow, on my shoulder, in my brush.

What me, worry?

It’s not coming out in clumps, but it is coming out. Just a little. Nothing to worry about, right? My hair is fine, but thick, right?

“It’s going to work. I know it.”

The young doctor said so.


About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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2 Responses to Infusion 2 – This time, it’s all about the hair

  1. Wendy says:

    You do have beautiful tresses, Heather, so I can see why it would be hard to see hair in your brush and ponder losing it, and undergoing all you are facing I am sure the hair thing just feels gratuitous, as in, there’s not enough bullshit going on here? I’m sure you’re tired of people telling you their war stories but I am thinking of 2 gals I know who lost theirs during chemo, and whose hair grew back even more beautiful than before. My cousin Ellen’s hair was always nice but now, grown back in, it’s magnificent. I’m just saying. (PS I would rather see you, healthy, in an angora beanie than see you unhealthy, in gorgeous flowing tresses. )

    But I am glad to hear you are starting to get some help for those side effects. You have enough on your plate without feeling like crap any more than you absolutely have to, and your suffering needlessly is not going to help you win this. Any discomfort you feel is worth calling the doctor for, and it’s also important that you report these things so the docs can better track your overall health. If you weren’t all the way across the country I would give you a hug right now, and beg you to go easy on yourself. You’re getting enough hard knocks as it is.

    • leftbreast says:

      Thanks Wendy. Sometimes ignoring side effects can make you feel like the whole thing’s not real. Except it is. It’s especially real just now: I just washed my hair (couldn’t stand it any longer, I’m only supposed to wash it once a week, but usually can’t go that long) and found a big clump of hair in the drain. I know it’s just hair, but still. Thanks for the cyber hug, and good luck with those pies.

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