First Day at Infusion School

Chemo Day 1 dawns early and surreal. I get up an hour early because I want to wash and blow dry my hair. This will be the last blow dry for four months. As a participant in the “Dignicap” study, I’m not supposed to use a blow dryer. or get color treatments. If I can stand it, I’m only supposed to wash my hair once a week. So, it’s a mixed bag: Hopefully, I’ll get to keep my hair through chemo, but I’m going to have a lot of bad hair days. Clips and ponytail holders will be my friends.

Trying not to think about my hair future, I put on makeup and look for something halfway decent to wear. All the other survivors say it feels better if you don’t show up for chemo looking like a schlump. I spend the majority of my life in athletic clothes and jeans, but channel the Southern gentility of my mother and grandmother and manage to find a knit baby doll dress and leggings that will be both comfortable and presentable. Mom would disapprove of the wild Ed Harvey sneaks, but oh well. Hope the silver necklace and matching earrings makes up for it, Mom.

Then it’s just like any other morning: Feed the dog, feed the cat. Take the dog out to do her business. Make lunches. Cycle dishes through the dishwasher, nag the kid to stop dawdling, vet the husband’s choice of shirt (he’s color blind.). Then we’re out the door, drop the kid at a classmate’s house for her school carpool, and then it’s off to see the wizard.

First stop is the Breast Care Center on the second floor, where they do the usual height/weight/blood pressure screen. Then we’re shown into an exam room to meet the nurse practitioner who will be kind of an administrator for my case, under Dr. Rugo’s supervision. She does a quick palpation of my abdomen, listens to my lungs and my heart, making sure I’m healthy enough for them to drip poison into my veins. She explains that she’ll do a similar exam before each chemo infusion. Any administrative, big picture questions should come to her. Symptoms, side effects, call the triage nurses. Dr. Rugo will be monitoring it all. I marvel at how efficiently they leverage Dr. Rugo’s expertise and her time. The doctor herself comes in for a few minutes. She’s wearing another beautiful outfit under the starched lab coat with the “Hope” pin on the lapel. She looks at me, both warm and appraising, “A little apprehensive?”

I nod. The gesture does not even begin to express how apprehensive I feel. I’m having that same fuzzy, out-of-body feeling I had last night.

While I sit there buzzing, Dr. Rugo and the nurse practitioner have a sidebar conversation about why my most recent blood work did not include the creatinine levels that measure kidney function. They send me down to the blood lab to give a few vials, then it’s up to the “infusion center” on the fifth floor.

As the elevator doors open, I’m glad to see that the infusion center is light, and airy, with views of the clouds and the cityscape. I did a story a few years ago that touched on how much natural light and views can contribute to healing. But the scenery can’t disguise the grim purpose up here: dripping poisons and biological agents and other things into people to try to cure a disease that’s really several hundred diseases, or to buy time for those who won’t win this battle. At one end of the center, next to the elevators, there are private rooms with hospital beds for people who are too sick to sit up in one of the sea green infusion chairs. Today, one of them is occupied by a young man in an orange jumpsuit and two corrections officers. Cancer does not discriminate.

The curving outer wall has been partitioned by glass dividers, with four or five chairs in each area, like sections of an orange. Three sections, then a sitting area with microwaves, tea, crackers, snacks and cocoa. Then three more sections curving around to a bathroom and a hallway. Within these areas, each chair is like a large recliner, upholstered in sea green poly-something-or-other. IV poles on those six-legged wheeled bases seem to be everywhere. They are, after all, the reason for this place.

Most sections are full, all cancer patients come up here, so the full range of fear and misery and hope stretches out along this corridor: old Chinese men who look like classical scholars, women who look younger than my stepdaughter, little old European ladies, African-American matrons, hipsters and students, middle aged men who look like professors. Cancer does not discriminate.

A nurse greets me, weighs me and measures my height. When will I stop grimacing after each weight number? Then she leads me into the third front section, near the cocoa/tea station.

My sea foam Barcalounger has been marked with a “reserved” sign scrawled on it, because it’s next to the “Dignicap” freezy machine. As part of a clinical trial led by Dr. Rugo and a Swedish company called “Dignitana,” this portable freezer will circulate cooled gel through several tubes into channels in a neoprene cap on my head. This will bring the temperature on my scalp down to 5 degrees Celcius, almost freezing. The hope is that my blood vessels will constrict, keep out the chemo drugs and save my hair follicles. I’m scared of the freezy machine. I don’t like being cold, but I like having hair, so full speed ahead. If it works, maybe I can help Dignitana/DigniCap come up with a better name for their contraption.

Funny how those who are well always talk about cancer and death and suffering in terms of “dignity.” I don’t know what that means. My father died bravely and uncomplaining, of metastatic lung cancer. But he wasn’t dignified in the last days when he was spitting up bile, hallucinating and wasting away to his skeleton. My husband was stoic when he had an angioplasty ten years ago, but he still had a scared look on his face as they wheeled him down to the cath lab. I started out trying to have a drug-free labor with dignity, but ended up whimpering like a puppy and crying for the anesthesiologist. I believe that people can suffer and die peacefully, even joyfully if they’re spiritually or philosophically prepared for that. But I’m not so sure about the dignity thing. I think that’s something that makes the well feel better.

Not your typical day at the hairdresser.

But back to the DigniCap: Alexa, a nice young Princeton grad who’s the coordinator for this trial, comes up to hook me up. UCSF is awash in brilliant, pleasant, attractive pre-med grads from top universities, helping to keep the wheels turning at UC before they go to med school. First, I lean over the sink in my section and wet my hair as much as I can. The idea is that the water will tamp down my hair and allow the cold to reach my scalp more easily.
Then Alexa slips a lovely disposable cap over my head and starts spraying that with water. The disposable cap will keep the neoprene cap hygienic for the next user. And everything has to be wet, wet, wet.

Next comes the neoprene cap with the channels, and over that a kind of diver’s cap to keep it all snug. It takes a while to find the right size cap, but we finally succeed:

Capping it off. Alexa gets ready to put the last cap on.

Alexa switches on the machine, and I feel the channels fill with fluid, holding my head in a cool, swirling, snakelike grip. Then the machine starts stepping down the temperature, bit by bit, toward 5 degrees Celcius. It feels OK at first, but then it gets really cold. Even with the Vicodin I’ve taken, it hurts. My high school pal Amy, who’s driven all the way up from Carmel Valley, three hours away, to be with Pete and me, starts trying to distract me. She has a physical therapy degree from UCSF and one of the all-time best attitudes on the planet. She is the friend who always has a smile and upbeat plan to get around life’s hard spots. She rubs my feet and then my legs, then she leans close in to tell me I can get through it. We ran track and cross-country together as kids, we’ve been through pain together before, but I can’t find any more strength. I just start to cry.

It’s not only the pain that makes me cry. I’m crying because Amy is being so wonderful, because my husband is standing there looking concerned, because this cancer thing is scary, because I don’t know how I’m so lucky to have so many people to help, because I don’t know why this happening to me, because I’m worried about my daughter, and desperate to get settled into our new place, because this is only the very first of SIX chemo infusions that won’t end until February 10, 2011.

Not my best angle. Amy cheers me on.

Then my scalp goes numb and it’s OK again. There’s another rough patch on the way down to 5 Celcius and the nurse OKs a second Vicodin. I still whimper a bit, and Amy brings out the troops. She’s got three kids, 18, 16, and 11, but she has a big garage that allows her to keep their best toys. In the wee hours, this morning, she’s pawed through their outgrown collection of Playmobil figures and rigged up some warriors. Then she’s surfed the Internet for cellular pictures of breast cancer. She places all this on my lap, over the warmed blankets that are keeping the rest of my body from getting as cold as my head. It’s completely ridiculous, silly. But it makes me laugh. When she gets Michelle the nurse to label the figures by the names of my chemo drugs, I laugh even more. This gets me through that last tough step down in temperature.

Playmobil to the rescue

Once I’m down to temperature for half an hour, the oncology nurse Michelle comes over with first cocktail, Herceptin, a monoclonal antibody or “biologic” drug (more on this in a later post). She asks my name and birthday. I tell her, another nurse reads the same name and birthday off the drip bag. They hook it up to my IV, and it drips for an hour and a half. They watch me closely, because some people have an allergic reaction to the liquid in which the drug is suspended. It feels a little bit cool as it goes in, then nothing.

Next comes Taxotere. They do the same ID routine, and watch me closely again, because this is the strongest chemo drug I’ll be getting. That drips for about an hour

Last comes Carboplatin, an old-time, standard chemo drug. That drips for another hour or so.

Chemo takes forever. I ask the nurses why everything has to drip in so slowly. They say something vague about studies, but I’ll have to look into that. I imagine they don’t want to give it to you too quickly because so much poison all at once might make you keel over, which isn’t the point. But I’d like to know for sure.

After the initial drama, the chemo infusion isn’t so bad. Husband Pete goes out to the fabulous King of Falafel down the street and brings back Middle Eastern lunch. I’m glad to eat before the inevitable nausea sets in.

We in the cosmonaut service salute you!

We chat with Michelle, my nurse. We laugh. We talk to some of the other patients in our section. Amy rubs my feet some more, then breaks out gourmet chocolate. Pete makes hot cocoa and asks for more warm blankets. Amy leaves because she has to make the long drive back to Carmel Valley to pick up her 11-year-old daughter from school. We hug. I am so grateful for friends like Amy.

And I am so grateful that the infusion, while not a party, is not exactly the horror that I had imagined. With my husband, a dear friend, some Playmobil figures, some chocolate, good conversation, and a couple of Vicodin, I can get through it. I guess Dr. Rugo would say it’s “well-tolerated.” I’ll take that, for now. One down. Five to go.

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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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8 Responses to First Day at Infusion School

  1. laurie says:

    small things to be grateful for: the dignicap is just the PERFECT color to enhance your beautiful eyes!
    great job muscling through it yesterday.
    xo, laurie

  2. I’m awed.

    Your bravery AND your writing.

  3. Sarah Goodyear says:

    So glad you had someone as positive and warm as Amy sounds to be with you.

    Love you,

    S

  4. Dick Guthrie (Tio) says:

    Heather:
    Your account is so human, so touching. I’m relieved it was not as bad as it might have been.
    Take ’em one at a time, girl, you’ll get through the remaining four.
    Down here the prayer wheels are spinning at warp speed.
    Tio

  5. Heather, Can I say that I love this post? Love sounds so funny for a post that is about disease, pain, suffering and fear… but to me is really about healing, embracing life, and recognizing that all of the former stuff is part of the cycle of life. I love your honesty, your perspective, your courage, how you make the experience of breast cancer treatments something that is so universal and real (as it is) to all women.

    So my best wishes, and yes, I do hope fervently that you keep your hair! And that the freezing treatments turns out to have this special benefit that all the cold makes your hair afterward amazingly even more glossy, shiny, radiant, and full of life. A nice metaphor in fact.

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