Chemo goody bag

If you're going to do chemo, you might as well enjoy the favors!

When you show up for your “Chemo Teach” appointment, you get a goody bag. It’s scrolly pink, of course, and topped off with breast cancer, pink ribbon tissue. The handles are tied together with a little gift tag that says, in pink ink, “You are not alone.”

Inside, I find the current issue of Vanity Fair, Burt’s Bees lip balm, a worry bead doll, Aveeno moisturizer, and a Rain Forest chocolate bar (because this is eco-town San Francisco and there are other things to worry about besides breast cancer). Best of all—really, really best of all—there’s a slip of paper explaining the Cleaning for a Reason” program. Once a month for four months, for free, a participating maid service will send a house cleaner to our home while I’m going through chemo. This is selfish—I’m an environmental writer, after all—but right now, house cleaning is worth more than a bushel of “Save the Rain Forest” chocolate. Maybe there’s a similar “Cooking for Chemo Moms” program. I’ll have to research that. Bagels, PBJs, ramen noodles, pasta with red sauce, cereal, toast, scrambled eggs—that comprises my husband’s entire culinary repertoire.

At the bottom of the bag, there’s a note from a woman named “Andi.” She was diagnosed with breast cancer at age 25, while she was pregnant. Her son is now 25, and she remains cancer-free. To celebrate, she got 30 friends together to make the goody bags and give encouragement to women like me, who are going through chemo for the first time. Thanks Andi.

I barely have time to paw through the bag when one of the medical assistants calls me for the usual temperature, blood pressure check and dismaying weigh-in. It took two years to put it on, so why do I expect it to come off in two or three weeks? Then, husband Pete and I are shepherded into an exam room.

Within a few minutes, one of the oncology triage nurses, Janine joins us. She’s Italian, from New York, but has spent most of her life in mellow Marin County, just north of the city. She manages to straddle those two universes, brassy, intense New York, and crunchy granola Marin, with charm. Perhaps because we see the reflection of our own New York/California contradictions in Janine, Pete and I both like this nurse immediately. Janine has an RN, and an Master’s of Science in Nursing (MSN). She worked at Genentech, doing research. She spent eight years of her career nursing patients undergoing bone marrow transplants.

Over the years, I’ve done half a dozen stories about bone marrow transplants for Family Circle magazine. It was the public service commitment of an editor-in-chief, now a victim of print journalism’s implosion. During the revision of the first bone marrow feature, my editor called to make sure that I wasn’t making the lurid side effects up, bones that ache from within, eyeballs that change shape and so on. The editor couldn’t believe it is really that bad. It is.

“Chemo is bad,” I say. “But having a bone marrow transplant is much, much worse.”

“You’re right,” Janine says. “I’m not sure I would do it. People do it for their kids. They want to make sure they’ve done everything they can to survive. There are several of us at the breast care center who used to do bone marrow transplant work. We love what we do; no one can survive this work unless they love it. Chemo seems like a breeze after the bone marrow ward.”

She leaves the room for a moment to get an information sheet that she thinks I’ll need. While she’s gone, Pete and I comment that it’s great that she’s so whip smart. She is where the rubber will meet the road during my chemo. We’ll call her first if there’s a problem, she’ll decide whether to kick the problem up to the oncology fellow sitting in the “hot seat” that day (fielding all patient chemo questions) or whether it deserves Dr. Rugo’s attention.

When she returns with the last info sheet, Janine gets serious. Chemo, of course, is not a breeze. It’s just not as harrowing as the living death of a bone marrow transplant. She explains some things that we already knew: Chemo is like blanket bombing a country. Cancer cells divide quickly, so the chemo kills all quickly dividing cells. While the chemo kills cancer cells, there’s a lot of what the military would call “collateral damage”: white blood cells that fight infection, hair follicles, mouth cells and cells in the digestive tract, fingernail cells.

My particular “cocktail” will be Carboplatin, a classic, hard-hitting chemo drug, Taxotere, in the same family as Taxol, and Herceptin, to kill off those cancer cells that seem to have the Her-2 receptor.

In addition to new, targeted drugs like Herceptin, a large part of the progress in cancer treatment seems to have come in the form of better managing the chemo cocktail hangover: an arsenal of anti-nausea drugs, drugs that bolster immune systems when chemo is killing off all the white blood cells, plus various vitamin supplements, over-the-counter remedies for diarrhea, constipation, rashes, itching, insomina, and aching.

“A couple decades ago, we couldn’t give the drugs in the doses that would be most effective because the patients just wouldn’t be able to tolerate it,” Janine explains. “Now we can.”

Then she walks us through the details of each drug, and each of the drugs’ possible side effects. It’s murky, of course, because how each individual responds to chemo is completely different. Taxotere can cause weight gain, but Carboplatin can result in loss of appetite and weight. (I’m rooting for Carboplatin in that case.) Herceptin can cause diarrhea, but Carboplatin can plug up a person.

You never know until you go through it.

Janine says she’s sure I’ll do fine. I’m young (ish) and healthy except for the cancer. Still, she hammers home these message again and again:

• Don’t be tough. We’ve got drugs to spare you the nausea and the vomiting, let us know if the drugs aren’t working.

• Wash your hands. Wash your hands. Wash your hands. Bacterial infections usually result from beasties already living in our digestive system or on our skin. But viruses travel through hand-to-hand contact.

• A fever or chills that indicate an infection can be life-threatening. Chemo weakens your immune system, an infection can lead to sepsis and sepsis can be fatal. If you have a fever of more than 101 degrees Fahrenheit, call us and then go to the emergency room.

Just a few of the things that will get me through chemo. The dosing is so complicated, I'm going to need a calendar. Thank God for insurance. Retail, one of the anti-nausea drugs costs $100 PER PILL.

• Call if you have a nose bleed, difficulty breathing, an irregular heart beat, unusual bruising, swelling that is uncomfortable, blood in your urine, tarry stools (usually a sign of blood in your GI tract), chills, pains in the side of the back.

Then she calls in prescriptions for my medical goody bag:

I’m going to need 10 or 11 prescription medications to get through this part of the process. That’s not counting shots to beef up my immune system and the nearly one dozen over-the-counter remedies, vitamin supplements and amino acids.

It’s not like those bashes in high school and college, but let the party begin.

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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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5 Responses to Chemo goody bag

  1. Catherine says:

    Hey Heather,

    Great goody bag! What a nice idea. And the monthly cleaning service is the best. What a blessing those women are to many.

    I’ve been meaning to write to you about this–and your post reminded me–did they prescribe Emend for you for nausea? It’s the strongest and best anti-nausea drug. They told me I wouldn’t need it because I wasn’t getting ACT, even though I told them I’m highly susceptible to nausea. I lost 8 lbs. in the first week after my first tx and finally went in for IV hydration, which made a world of difference. Thereafter I was prescribed Emend (you may have gotten it because I think it was $100/pill).

    Please, please ask about weaning off the oral steroid (dexamethasone or decadron?) VERY SLOWLY the week after chemo. I only realized after my 4th tx (and after reading about it online–probably from some extremely helpful woman at bc.org) that the reason I was falling into an emotional abyss the week after every tx was due to withdrawal from the steroid. And I mean the pits of despair. (And I was already on an anti-depressant.) I did not suffer in this way after my last 2 txs when I weaned off more slowly. The doctors just follow a protocol–even when I brought it up with my oncologist, it was more like “do what you want” rather than “oh, maybe we should look into this–maybe people are suffering unnecessarily because we’re weaning them off steroids too quickly.” Duh.

    I’ll email you some more thoughts on chemo. xo C

    • leftbreast says:

      Catherine, Yes, I’ve got Emend. It’s the $100 pill. The directions from UC say NOT to take it until after the pre-infusion blood work, to be SURE you’re going to need it because they can’t replace it. I think the steroid is Decadron. I’m going to try to get organized in the next three days. Ha! But I’d love to lose the 8 pounds. How shallow am I? I’ve got cancer, and I’m obsessing about hair and weight!!

      • Catherine says:

        I always said I would not recommend cancer/chemo as a weight loss plan. That being said…

        But you really do not want to suffer that kind of nausea. I was not vomiting–just feeling so sick that I couldn’t get out of bed. Couldn’t eat or drink anything. Completely dehydrated. It was miserable. I had to take a cab into the city to get the IV hydration–I remember I felt like a ghost, even my shoes felt too big.

        I thought you were supposed to start Emend the day before chemo? Haven’t you had a lot of blood work done in the last few months? Were your levels all within range? It’s after chemo, when the white blood cells could go down, e.g., that your chemo might be delayed (but even then you’ll be taking the Neulasta shot to prevent that). I wouldn’t think there would be a problem before the 1st chemo. (But I would recommend talking to your nurse more about this.)

        More later. xo

  2. Let the party begin, she says. That’s amazing, Heather. I bow down to you. I celebrate you. Go get ’em.

    • leftbreast says:

      Alison, It takes one to know one. You have dealt with so many challenges, and done so with so much style and joy, that I should bow down to you. Or…I guess we could prostrate ourselves all the way to Lhasa, but that would be kind of tiring for two ladies charging into middle age. We shoulda done that in our 20s when we were in China!

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