Stories from the Infusion Center

A gloomy day and week coming up.  From that long freeze and blue sky of last week, we’re now back to typical Northwest grayness and rain, which makes skiers happy because it means snow in the mountains.

Yesterday’s ice and snow had me skiing (figuratively) through the morning much like the beginner I am — frantically trying to stay upright at high speed while the ground slips out and away from me. My daughter thought she had to be at school early and so my husband dropped her off on his way to work. Turns out the weather brought a 2-hour delay at school so I had to fetch her and bring her back. My son was home with a cold, my household assistant was running late, and when it came the real time to take my daughter in, the repairman who’d come to fix the neighbor’s furnace was blocking the driveway, fearing to move forward because his van was sliding downhill on the ice, getting no traction backward to get off it. (I’m reminded of lyrics from a Jethro Tull song:  “Skating away, skating away, skating away on the thin ice of new day….”) By contrast to the events at home, the infusion center, where I arrived almost an hour late, was an oasis of tranquility.

The hummingbirds continue their regular visits, though a hummingbird in the snow appears incongruous to this Midwesterner, where all hummingbirds vacate for the freeze. I discovered that hummingbird food doesn’t freeze, but does make a nice sugary slush. Of course we’ve had to name the two new ones: Tinkerbell and Flip Flop.  This morning, I’m watching another, stranger bird — a float plane — doing low figure 8s over the bay.  Fascinating, but not nearly as gracefuI as Tinkerbell.

This week’s white count, 6.5; hemoglobin, continuing its climb, at 9.4. After the initial burning sensation in my hands last week, there seems to be little neuropathy, but my nails are more spotted and discolored so I’m trying to protect them.  Two more rounds of Taxol to go.

The Popsicle Report: So as I’m settling in to my pod, glad to be able to just sit and breathe, I notice the man opposite me. He is my compatriot — bald (perhaps by choice since he also has a mustache), fingers in pans of ice water, iPod buds tucked into his ears. And on his feet, over his own white socks, he has a second pair of white socks encasing packs of ice. He said that his first series of chemotherapy (another veteran!) bothered his toenails so this time he was trying ice on his feet too. His tall, dark-haired wife was folded into the chair beside him quietly reading. I went off to get my usual “appetizers” — green tea and a Popsicle (blueberry lemon again). Shortly thereafter, the man’s wife left the pod and returned in a moment with a Popsicle for her husband (strawberry orange).  He said when he saw mine, he thought it would be a good idea. I sure can’t argue with that.

My nurse for the day was Therese, a Swiss woman who has worked at the center for 10 years. She is just one of the many nurses at the center, and all are heartening examples of how serious illness can get incorporated into life without dragging you down. These nurses choose to work among seriously ill patients every day. Therese did admit that it sometimes is hard to watch what happens to patients (the nurses compensate with a lot of black humor during break periods), but she said it is a privilege for her to help each patient along the path, no matter which way it leads. So while they work and educate patients about drugs and side effects, they also talk about everyday things: which is better for roasting turkeys, a regular oven or an electric roaster?  They wear smocks adorned with flowers, butterflies, Disney characters and even Betty Boop.  And when a patient finishes chemo, they gather, clap and sing, much like waiters at a restaurant attending to a birthday guest (though none plays the harmonica), a modified version of the 12 days of Christmas (“two needles poking…”).

Can’t wait for my turn to hear them sing.

This week, as she was working with me in her smock covered with polar bears, Therese turned to the small woman seated in the chair next to mine and spoke to her in German.  I’d seen this woman several times before, in her colorful outfits and fuzzy pink-and-purple hat. Today she wore the hat again, with a yellow T-shirt and a leopard-print scarf wrapped around her neck.  She sat in her full makeup and large glasses, quickly crocheting a bright yellow blanket that was spread across her lap. I decided to forego listening to my iPod in lieu of a conversation with her.

Uta had come to the U.S. from Germany after marrying an American military man. Her husband, John, came and went from the pod as Uta’s infusion took place.  He was a short stocky man, clad in one of those signature black baseball caps embroidered with “U.S. Veteran” and “Vietnam” and he had adorned it with color bars, several American flag pins and one pin of the flag of Germany. Several more flag pins were attached to his vest. He was chatty, referred to himself as a “Warshegonian” in origin, and entered and departed our conversation in the same way he exited and entered the pod frequently.

Over the years in her new country, Uta taught herself English, raised 2 children, worked as a nurse’s aid, ran a restaurant, taught German, and cleaned houses (5 a day at the time she was diagnosed). She has been coming for infusions for 10 years for chronic leukemia, which was discovered by accident when she tried to donate bone marrow at the age of 50. Though her treatments have been more intense in the past, she now comes once a month to the infusion center.

Our conversation ranged across many topics: German food (how to make a good torte and a spinach sauce, and the advantage of a breadmaker to knead dough when you no longer have the strength to do so), how women have harder lives than men (John nodded vigorously at this comment) but she wouldn’t want to be a man. Men may know more but women understand more (John nodded vigorously again). We talked about how it is good to be small (she’s no bigger than I), and I told her a comment someone made to me once upon a time: Little people are like chihuahuas; we make a lot of noise because we’re afraid we’ll get stepped on. She thinks the tradition of naming sons after fathers ridiculous. John agreed that it’s a problem being named after his father. The boy feels he either has to live up to or totally deviate from his dad’s performance to carve out an identity for himself.  But that didn’t stop John from naming his own son after himself. And his grandson is now John the fourth.

Japanese do not have this custom of naming sons after fathers, though they do sometimes number their sons.  Ichiro, a common male name in Japan, is known especially here because of the star player for the Seattle Mariners. But the name Ichiro actually means son number 1.  When my son was born, my former boss, who knows the customs of Japan, teased me that we should name him after his father, with the “junior” appendage.  Well, we know how Indiana Jones took to that idea.

Uta and John brought to mind the neighbors I had when I was teaching down in Laredo, Texas, many years ago. Mario was a Mexican-American man who had served in the Special Forces in Vietnam. (He proudly showed me a map of these operations which were  emblazoned on a black T-shirt he wore one day.) His wife Inge and he had met in Germany when they were both working as spies, he for the Americans, she for the Germans. They both liked to tell me their stories, Mario about military service, Inge about her views of life. She recommended that, if I marry, I choose a man who is good looking, makes good money and has hair.  In her opinion, those features were the only things that make up for the trouble they cause. She took pity on me, a single woman living alone, grading essays late into the evenings, and cooked German food for me. (Though I am of German descent I’d never had sauerbraten before.) In trade I looked after their parrot when they went out of town.

But back to the days at hand.

I’m still poking around on the Web for answers to my questions, but spend less time there because the information becomes repetitive (and discouraging) and there’s nothing new for my situation, though there are some promising agents — PARP inhibitors and two types of growth factors — being tested. I did find an article I should have read when it was published, back in 2007, about dense tissue being a risk factor for breast cancer: http://health.usnews.com/usnews/health/articles/070204/12breast.htm.

Like the woman described in this article, I wish I’d known about the implications of dense tissue sooner. I might have pushed for different screening tests, kept a closer watch. This article appeared 2 years ago, but dense tissue still doesn’t show up on those risk factor lists we see today.

At breakfast on Sunday, my son asked the rest of us what we dreamed about the night before. No one else could remember, but I had dreamt that, on the upcoming trip to visit family for Christmas, no one wanted to be in the same room with me because of my bald head (which is not so bald anymore but resembles a newborn’s with faint, fuzzy hair of indistinguishable color). Then I recalled: we’d watched Rudolph the Red-Nosed Reindeer on TV the previous night. Perhaps I was empathizing with Rudolph, fearing no one would let me play reindeer games.

But in the spirit of Christmas (and fundraising), here’s an idea for those billiard-playing aficionados on your gift list who really do have everything. By purchasing it, you can also support research for triple-negative breast cancer: http://www.shopmcdermottcue.com/McDermott/M88B.html.  Pool cues. Now this is corporate sponsorship I can get excited about. Don’t mind the price; shipping is free!

I’ve attached a few more photos. Despite all my talk about hair and baldness (the only obvious outward sign of my current experience), I’m not one to think my hair is my identity. But I have discovered that its loss opens up an interest in playing with identity and disguise.

In this first photo, taken last summer, I tried out the military look.

Here, like Uta, I am disguised as a colorful fuzzy gumdrop.

Besides my fuzzy head, this is the hat my daughter likes to pet.

Here is the fashion hummingbirds prefer.  This is the scarf that prompted the hummingbird attack last summer.

And here, I’m a Muslim on her way to iHop.

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This One Has Photos!

The happy drugs are at work, so here I am, going on midnight, typing by the light of the Christmas tree we erected over the weekend.  I’m wrapped in one of my prayer shawls and the wrap I used several weeks ago in my iHop experiment.  It’s still cold here — the dog’s water froze in his bowl outside today — but at least the winds have died down.  This weekend was the first time I’ve seen whitecaps coming from the east, across the bay, since we’ve lived here.

The cold didn’t stop the hummingbirds though.  Matter of fact, we saw two new ones over the weekend — female Annas.  They look to be in need of fattening up.

Today was a day to celebrate for some very important people in my life, my father and my daughter. My daughter entered teenhood today, and I don’t believe it was coincidence that she was born on her grandfather’s birthday. I swear she purposely stalled labor so she could be his birthday present 13 years ago.  Today was a happy day for her; my thanks go to those of you who contributed a page for her scrapbook. It turned out beautifully. And tonight, her celebratory dinner downtown ended with a waiter playing a lively version of “Happy Birthday” on the harmonica, which brought applause from the roomful of diners. Made me wish I could be 13 again.  (Well, for 10 minutes or so, anyway.)

But this is for you, Dad:  Happy Birthday!
I’d play it on my harmonica, but I don’t think you’d leave me a tip for my performance.

Of course, today also happens to be Pearl Harbor Day, an auspicious day for someone with the last name of Yamamoto. The Admiral really didn’t think it a good idea to send the bombs. Too bad the emperor’s advisers didn’t listen.  But because they didn’t, I now have hanging in my house two thick chains of colorful origami paper cranes — silver, yellow, green, blue pink, orange, gold — hand-folded by my dear friends in Japan. These are the first two installments of the total 1000 they are working on. It is their way of sending good thoughts and wishes to me, in the same way the chains of cranes are folded for the memorials in Hiroshima to bring peace and healing. I look at them and know that I am loved.

The Popsicle Report:  Last week, since the doc wasn’t available on Monday for my usual time slot, I had to make another trip to his office on Friday. Since he needs to review the blood counts, I had to wait while the lab ran the tests on the sample they drew from my port. (You see where this is going, don’t you??)  Yes, indeed. TWO popsicles in the same week.  This one, strawberry-orange. I tried it again today to give it a second chance. Not as good as the ones with lemon, but I ain’t complainin’.

The white cell count last Monday was 15.7, but by Friday it dropped to 3.7, so I went ahead with a Neupogen shot, even though the doc said I could wait till this week.  I am determined to stay on schedule, and if a cell count can drop 12 points in 5 days, I’ll do what I can to stop it.  The red cells continue to climb (hurrah!), up from a hemoglobin of 8.7 on Monday to 9 on Friday.  Still low, but better. Must be those B vitamins.  I’ve been released from physical therapy with a set of exercises to do at home. The discomfort under the arm continues but I anticipate a change once I’m off the Taxol. I’m starting to have some neuropathy in my fingers (drat!) — a burning sensation down the backs of a couple yesterday, and tenderness at the tops of the nail beds. It’s intermittent so far, and I’ve managed to get almost to the end of infusions before it showed up, but I’ll be wearing gloves now when I work in the kitchen.

Nothing special on the iPod today. Matter of fact, I was getting annoyed at the shuffle function. Those same darn 817 songs, over and over again. The best today was Los Lobos performing the Monkey Song from Disney’s Jungle Book (“Oooh, ooh, oooh, I wanna be just like you…”).  I assigned this song to one of my students last spring for a short research project in my English 102 class. Poor kids; I assigned each of them a tune off my iPod to do a quick presentation — artist, type of music, meaning, history, etc. — so they got an earful of the music I’ve mentioned here, including Nina Simone and the Gregorian chant.

And in return, they got to choose one of the tunes off their gadget to present later on.  So (in revenge?), I got an earful of Coldplay, the Plain White T’s, and more rap than I care to hear.  One student, though, played Pink Floyd’s “Money.”  He thought music from the 70’s was pretty cool.

The infusion center was quieter this week. Same number of people, but a more somber mood.  Many of the patients have a caretaker with them, and today I noticed a couple of them in tears. One was the wife of a man in my pod. The man looks to be in his 30s and I’ve seen him there many times before. Stocky, fair, with a black 1920s-style motoring cap on his bald head. His sessions are much longer than mine, and he often reaches out to hold his wife’s hand during them. Directly across from me was another man, likely in his 40s, who came in to have the IV site in his arm checked and re-bandaged. He was talkative, cheerful even, and complimented me on my headgear (a warm neck scarf that I bought at Target wrapped around my head; I’ve gotten a reputation at the center for having interesting headwraps). His girlfriend hung over the back of his seat, watching the nurse as she unwrapped, cleaned and rebandaged the area. The man wore a yellow rubber bracelet on his outstretched arm — that Live Strong bracelet designed by Lance Armstrong during his treatment for testicular cancer.

One of the staff people at the center commented that, in reading Armstrong’s book about his experience, she found him arrogant, “a jerk” as she put it.  I haven’t read the book, so I can’t say, but he’s certainly done much to spotlight cancer and push harder for more research.  Perhaps that’s why celebrities get paid the big bucks. They can indeed make a lot of noise for a good cause, when they’re not feeding their own egos, pretending to lose their children in balloons, or crashing White House dinner parties.

Here’s another celebrity of sorts making noise about cancer: http://www.nytimes.com/2009/12/06/opinion/06kristof.html?emc=eta1

This is Nicholas Kristof, a columnist for the New York Times. This week he talks about the environmental influences that may very well lead to cancer.  As he points out, when a 10-year-old is diagnosed with breast cancer (follow the link in his column for that story), there has to be more going on than what you see on the lists of risk factors. And breast cancer afflicts men too. According to the American Cancer Society, in 2009, “1,910 new cases of invasive breast cancer will be diagnosed among men in the United States…[and] about 440 men will die…”
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_are_the_key_statistics_for_male_breast_cancer_28.asp

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OK, morning now, and I’m feeling that late night. The lowered steroid dose and the switch to Claritin have lessened the rollercoaster effects of the pre-emptive meds, which is good.  They can’t do much to affect the emotional rollercoaster though. As I stood in the kitchen at 6:15 a.m. two weekends ago, watching my husband and kids go out the door to go skiing, it was hard to choke down the anger and sadness. I manage those feelings as best I can (visualize the seedhead of a dandelion — blow those fears and feelings away to let them go), and on that day I took the dog for a beach walk and had lunch with a friend. Now that we’re past the initial shock, the denial has decreased, but fear still takes hold — fear for myself, fear for my family. And that’s in addition to the usual, everyday fears and emotions we wrestle with. For example, as I watched my daughter celebrate her birthday yesterday, I knew that she is on her way to places and experiences that, as her mom, I cannot (and should not) go.

But I do manage to get free of the mental burden for stretches of time, mostly by attending to daily tasks.  And that’s just the moment, it seems, that something external barges in to remind me. Last week it was a woman in a blue sparkly top in a bathroom.  I was attending the gala fundraiser hosted by the hospital where my husband works.  Every year they auction off gorgeously decorated trees and wreaths to raise funds for equipment and their many services.  I dressed in my fancy clothes (the only time I ever do here in the casual Pacific NW), and had chosen a gold brocade headwrap to complement the green chiffon dress. I was seated at a table among friends and was enjoying the action of the auction. Midway through the event, I went to the restroom and, as I came out of the stall to wash my hands, there stood the woman in her frizzled blonde hair and sparkly top, drying her hands on a paper towel.  She looked up, noticed my headwrap and blurted out, “Do you have cancer?”

Stammering for a polite answer (rather than the retort that came into my head), I said “Well, I’m working on getting rid of it.”

She told me how she watched as both her mother and father went through it and reassured me that I would get through it too, came to give me a hug, and chattered on more, but I wasn’t listening.  I couldn’t hear her words through the angry buzzing in my head that told me I’d just been invaded.  Certainly she meant well, but this was not the bonding experience I’d had with the woman at the gas station several months ago.  And I grew more irritated as she followed me out and down the stairs, stopping me at the bottom to brace my arm and wish me “Godspeed.” At these moments, I’ve come to realize that I am the screen that others project their own experiences and worldviews on.  No point in trying to carve out a conversation; the best thing is to deflect and depart.

On my departing note for this update, I’ve included photos from the journey.  The first is from last year, when I was unaware of what was to come.

The second is the interim haircut as more and more started to come out. My son made the crown for me.

This was after my husband’s expert shave.

And finally, a recent one, me in my royal headgear with my son, my faithful and loyal attendant.

Too Many Drugs and Mysteries

Started off in a low mood today. It’s grey November. I’ve grown tired of the intrusion of this illness into my life and that sense of just not feeling right.  Nothing wrong on a big scale, but not feeling right either.  The ongoing discomfort under the left arm and the time spent in physical therapy. The dry ticklish cough that comes on at odd times and then mysteriously disappears. The slight ache in my neck and shoulders that comes and goes as well. The continuing anemia that forces the body to slow the pace the mind sets. The oozing blood that clots my nose, and then stops.  As Paul Simon sang it in my ear during infusion:  “I don’t find this stuff amusing anymore.” (That was after Phil Collins, from his Genesis days, singing “I Can’t Dance” and Bette Midler crooning “Am I Blue.”)

And then there’s the burden of all the ancillary drugs to counteract the side effects of the Taxol. For the one cancer drug infusion, there are 4 “pre-emptive” drugs beforehand: Zofran to prevent nausea, Zantac for the tummy, Claritin to prevent allergic reactions, and of course the happy steroids, which I have come to both anticipate, for the lift they provide, and dread, for the later crash.  Then there are the 10 supplements and 2 drugs at home during the week, including Vit. D, fish oil, CoQ10 for energy and the heart, a probiotic supplement for digestion, the glutamine to prevent neuropathy (along with the ice-water finger soaks, it seems to be working), the Neupogen, and the Ativan at night.

When I counted it all out for the naturopath last week, commenting on the supplement-to-Taxol ratio, he grinned widely and said, “That’s the way I like it!”  They may be natural substances, but they can be prescribed just as quickly and heavily as synthetics from the Western practitioners.

This better all be temporary.

My white cell count is a robust 8.7 (normal range, 4-11), but it’s now time to keep an eye on those red cells.  The normal range is 3.8 to 5.2.  My total has been hovering just above 2 (2.25 this week, 2.17 last week).  The key subset  of this count is the hemoglobin, with a normal range of 11.6-18.5.  Today’s number is 8.4, eight being the threshold for a decision to bolster the red cells.  If the hemoglobin drops below 8, they usually recommend supplementing the cells. Used to be they’d use an injection called ProCrit, but a few recent reports have shown a possible connection to recurrence in patients with colon and breast cancer. The alternate method to bolster the cells is with a transfusion.  So I’m trying to race time a bit here.  With 5 more Taxol infusions to go, I’m hoping the red cells hold steady and I can avoid doing anything invasive to support them.  The naturopath has loaded on a few more supplements (Vit. B6, B12, folic acid, and protein powder, rounding out that total of 10) to try to stop the downfall. It might be working.  Last week’s hemoglobin count was 8.2.

BUT, I can still walk at a pace that my children have trouble keeping up with, so, as Tony Bennet and k.d. lang sang in my ear from my iPod:  “I ain’t down yet.” And even though I’m having to supplement my eyebrows with some pencil lines now, I still look (ha!)  MAHvellous. (Especially in my blue fuzzy hat, which gives my head the shape of a gumdrop.  My daughter likes to come pet my head when I wear it.  I can’t understand why dogs like to be pet on the head.)

OK, OK, I know you’re all looking for it.

The Popsicle Report: I needed comfort food today.  Blueberry-lemon.

The grand tree outside the infusion center window has surrendered its leaves, and shows only its blanket of moss on the grey bark against the grey sky.  As I waited for the blood counts to come back, I noticed the woman across from me, getting ready to have her chest port accessed for her blood draw.  She took the characteristic pose, hands pulling down her shirt to expose the spot on her chest where the port is implanted.  On me, the port protrudes like an odd rock embedded beneath the skin.  On people, uh, better endowed, like this woman, the patient has to point out for the nurse where the port is located. This woman’s posture brought to mind those church paintings of Christ pointing to his sacred heart that I remember from my childhood. (And the way this port sometimes irritates my chest wall makes me think it’s bound in thorns.)

Then I noticed the tall distinguished man poised over the table where the puzzles are, working the pieces into place. Next to him stood his personal IV machine, which he had wheeled over from his assigned Barcalounger in another pod.  Meanwhile, the nurse worked her way around my pod, bringing her tray of cocktails, those little plastic cups with the pre-emptive meds. I wished mine contained shots of vodka instead of the steroids and Claritin, but then I figured the vodka probably wouldn’t taste right. Not even chocolate tastes right now.

As I sat observing my surroundings, I twirled the end of my pen against my temple, rather like Dumbledore and Snape in the Harry Potter books, when they wanted to remove certain thoughts and memories from their brains to be set aside in the pensieve for later viewing.  Wouldn’t that be a great trick — removing the swirling thoughts that clutter up our brains, to be kept for later or thrown out altogether.  (If you’re a fan of puppets, Harry Potter, rhythmic chant, or just general silliness, take a look at one of the Potter Pal videos on YouTube: http://www.youtube.com/watch?v=Tx1XIm6q4r4.)

I turned up the volume on the iPod today to drown out the the snarls, moans and beeps of the numerous IV machines.  ‘Twas much more pleasant to listen to The Crusaders, some Brahms liebeslieder waltzes, the Doobie Brothers’ “Takin’ It to the Streets,” Norah Jones, David Byrne (Rei Momo, his Brazilian-inflected album), Angelique Kidjo (African folk singer) backed by Carlos Santana, Nina Simone’s “Four Women”, and — had to get there eventually — the Beatles’ “My Life.”  If you haven’t seen it yet, Chris Bliss does a MAHvelous juggling routine to a Beatles tune: http://www.youtube.com/watch?v=H8f8drk5Urw

In my continuing search for meaning in this whole experience, I’ve been wondering if there’s a difference between cure and healing.  We hear lots about walking, running, racing for “the cure.” Since there are about half a dozen different types of breast cancer, it seems foolish to think there’s only one cure. My docs says we’re aiming to cure my cancer, though I don’t know how you can really be sure you’re cured except in hindsight many years later.

Dictionaries pretty much equate the terms “cure” and “healing” but the self-help literature seems to distinguish the two, with cure referring specifically to the scientific, medical process, and healing to the psychological realm.  Several of the books I’ve encountered take up the mind-body connection and speak of healing as ridding yourself of the mental burdens that led to your illness. In other words, they imply that we are responsible for developing whatever ails us.  Bernie Siegel went so far as to define a “cancer personality” — someone likely to develop cancer because of their inward characteristics and history. Caroline Myss, a “medical intuitive” and healer who wrote the once-bestselling “Anatomy of the Spirit,” goes so far as to say that people develop cancer because of unresolved issues from their lives, and specifically that women develop breast cancer for lack of nurturing themselves. There are a surprising number of people who subscribe to these ways of thinking.  (I believe it’s called “blame the victim.”)

Like those lists of risk factors for breast cancer, these descriptions don’t fit me very well either.  I don’t have psychological baggage left from childhood (unless you count having to eat liver and onions), and have not suffered great traumatic experiences that have crippled me (yes, I am indeed lucky).  If you follow Myss’ logic and look at the numbers of women who develop breast cancer (that popular 1 in 8), it would seem that a whole lot of us women need to be doing a whole lot more to nurture ourselves, and in Asian countries, where women are expected to give up themselves for their families, the rates of breast cancer should be higher than here, when indeed they are lower.

As it turns out, Bernie Siegel later retracted his definition of the cancer personality, and Caroline Myss, who now bills herself a mystic, wrote another book in which she admits that, indeed, no matter what some people try, they don’t heal (and some actually choose not to), and things like genetics and environmental influences do play a role. Her current stance on the matter seems to be — pray.

Nothing terribly mystical about that.

TV Ads and Chemo Brain

First up, I need to send a great shout-out to my sister because it’s her birthday today (as well as All Soul’s Day and Dia de los Muertos), and because she and my brother-in-law brightened my week considerably by appearing on my doorstep on my birthday.  ‘Twas a total surprise to me, especially because they live far, far, FAR away, and because my own family (even my son, who’s 9) did a grand job of keeping the secret. Now I know just how big a secret they can keep.

Hm. I’ll take this to be a good thing.

And another shout-out to all of you who have done so much to make this journey more bearable by bringing food, sending cards and care packages, calling and keeping me in your thoughts.  It has made all the difference. As the priest in church said yesterday (before they began the litany of saints:  “John and Paul, Cosmos and Damian, Agatha, Agnes, and Lucy” all the way down to Crysogunus — pardon my bad spelling), when people ask him how he is, he replies, “I am blessed.”  Well, that makes two of us.

The Popsicle Report:  Today, I opted out of a Popsicle. When I surreptitiously checked the freezer at the infusion center, I saw only a half-dozen sad, over-crystallized fluorescent tubes.  Perhaps I’ve gotten spoiled (as far as Popsicles go, anyway), but those just didn’t look worth having.

Today was infusion #4 of the Taxol, #16 in the series of 24 total infusions, so I’m two-thirds of the way through.  There’s no reason to expect any delays (fingers crossed), so I should be able to finish by the end of the year.  With holiday travels, the last infusion may end up being on New Years’ Eve.  Auspicious timing, I think.

After the energy-level roller coaster of the past couple weeks — steroid high, Benadryl crash, steroid high, steroid crash — I thought to ask the oncologist if we could make some changes to lessen the upheaval.  The rate of brain activity made me think I was channeling Robin Williams (even though he’s not dead yet) at his most manic stages. If you like him you can find plenty of his clips on YouTube.

So today, we made some changes in the pre-emptive drugs I take before the Taxol.  Instead of Benadryl, it’s Claritin, which doesn’t bring on the dozing.  And we’ve reduced the dose of dexamethasone to lessen the steroid high. I’m all for being happy, but can sacrifice a bit of happiness to gain a better chance at sleep.  The melatonin suggested by the naturopath hasn’t helped, so I’ve gone back to the Ativan and will try to get back to natural sleep once the chemotherapy ends.

My white cell count was a plain old, normal 5, but Dr. L wants me to do a couple Neupogen shots this week.  Since the count last week was 21, it’s hard to know if the white cells have leveled off now or might drop further.  Working with the Neupogen this week might clarify that. Now if I could only track down that elusive swine flu vaccine to complete the picture….

There have been some positive changes now that the remnants of the Adriamycin and Cytoxan have dissipated.  No more heart palpitations, except what I’d always had, or ringing in the ears. My mouth feels better, and food tastes better, though not quite right yet, which I realized again with an attempt last night to eat some chips and salsa.  And my stomach isn’t so acidic. Gosh, I might even attempt a glass of orange juice soon.  Yippee!

But of course there are trade-offs.  A slight oozing of blood in my nose, which is caused by the Taxol, and no improvement in the anemia. White spots starting to show up on my fingernails, and my eyebrows are slowly disappearing. No sign of joint/muscle pain (fingers crossed again), but I’m going ahead with the preventive maneuver of fingers on ice to prevent neuropathy.

Instead of the ice packs of last week, this time it was tubs of ice water for the full immersion effect during infusion. Since I couldn’t write in my journals during that time (I keep one of my own plus one for each child), I plugged in my iPod and gazed out the window. (I make a point of picking the Barcalounger with the best view.)  Outside was a glorious old maple tree, thick variegated trunk sending up two dozen close-packed branches to today’s clear sky, the ubiquitous Pacific-northwest moss spreading over at least half the tree.  It would be a fantastic tree for climbing if you can get a leg up. The tree is still hanging on to about half its yellow leaves, but it lazily surrendered a few now and then to float to earth. Sure beats watching pictures on a TV screen any day. Thankfully, there are no TVs in the infusion center.

So for the hour of the infusion, I watched the tree and listened to my tunes (on shuffle mode, of course):  some reggae from Bob Marley, Queen’s “Bohemian Rhapsody” (I’m not ashamed to admit), Santana, Bonnie Raitt, Ron Carter (playing jazzed-up Bach on his stringed bass), James Taylor, and Mozart’s clarinet concerto.

Look, if ya gotta pump poison into your veins to knock out a deadly disease, the more comfortable and distracted you are, the better.

As I’m typing this, my daughter is practicing the Shostakovich piece on the piano downstairs while my son is plucking away at “When You Wish Upon a Star” on his guitar in the kitchen. Shostakovich and  Disney. Perhaps this is what they mean when they talk about cognitive dissonance?

So anyway, while I listened, watched, and soaked (but didn’t doze), I was reminded of another image of fingers in a bowl.  Of course we document our age if we recall it but — do any of you remember Madge, the manicurist, in that Palmolive TV ad of years ago?  She’d soak her clients’ hands in dish soap because it was supposedly so gentle and effective.  I half expected to glance over and see her in her smock, sitting on a stool at my table, half-moon glasses slipped down her nose, nail file poised in midair.  And I wasn’t the only one thinking this. One of the nurses described the same memory when she walked by and saw me soaking my hands.

This is the second image from a TV ad I’ve connected to my experience.  The other one is the Cream of Wheat bowl.  That bowl followed me around in my mind, as it did the children in the TV ads of my youth. I much prefer the image of a soothing, heartening protector following me around.  Sure beats the Sword of Damocles. (If you want that whole story, you can find it on Wikipedia: http://en.wikipedia.org/wiki/Damocles.)

One other side effect that has not yet appeared (though some might beg to differ) is the dreaded “chemo brain.” Here are the symptoms, according to the Mayo Clinic:

Signs and symptoms of chemo brain may include:

  • Being unusually disorganized
  • Confusion
  • Difficulty concentrating
  • Difficulty finding the right word
  • Difficulty learning new skills
  • Difficulty multitasking
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Taking longer than usual to complete routine tasks
  • Trouble with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words

(www.mayoclinic.com/health/chemo-brain/DS01109/DSECTION=symptoms)

Well I don’t know, but I suspect many of us could lay claim to some of these symptoms some of the time, even without going through chemotherapy. A friend told me he knew of someone who claimed she bought a whole roomful of furniture under the influence of chemo brain. I haven’t yet had the urge to amass couches and chairs, but if I do something equally wild, you’ll know why.

Chemical Cocktails Revisited

The grayness has set in and the raindrops are falling.  I knew the glorious weather of last week wouldn’t hold, but at least a few of the hummingbirds are still coming by. They do seem to come more on gray days.

I switched to the new drug routine yesterday and am waiting for the new adventures to begin. Nothing like the whiff of an illness or a change in drug routines to make you monitor every body process you’ve got going on.

The Popsicle Report:  Unfortunately, a Popsicle is no longer part of the routine.

The new drug, Taxol, isn’t as likely to induce mouth sores, so no need for the sweet treat to cool the mouth during infusion. I suppose I could put on a pathetic face and ask for one anyway (surely the nurses wouldn’t deny me?).  Or I could just live vicariously through my children.  My daughter got a Popsicle last week after her flu shot (orange).  I could probably drag my son in for a shot and a Popsicle, but he’s less willing to cooperate when it comes to needles, at least needles that are poked into him. When my husband jokingly offered him the chance to give me the Neupogen shot last week, his eyes got really big with interest.  “Can I give you the shot, Mom?”

No. No. And no.

Instead of the Popsicle, I get to plunge my hands in a bucket of ice during the infusion.  The main side effects of Taxol are neuropathy (burning, tingling, etc.) in the fingers and toes, and possibly bone/joint/muscle pain.  The principle behind the bucket of ice is the same as with the Popsicle — cool the area likely to be affected and you might diminish the side effects.

Isn’t science amazing.

The infusion procedure is similar to the Adriamycin — check in, check the blood count, and proceed as long as the numbers look OK.  My white and red cells are holding steady, though a little below normal.  The Taxol isn’t supposed to be as hard on the bone marrow as the other drugs, so I may be able to stop the injections of Neupogen, and the nurses say we don’t worry about the red cells unless I get to a point that walking across a room leaves me winded.

Next comes the happy drug, the dexamethasone, and then my chemical cocktail — a mixture of 25 ml of Benadryl and 50 ml of Zantac.  These are designed to forestall any allergic reaction to the Taxol.  Even though the Zantac is primarily used for stomach problems, it also acts as an antihistamine.  And Benadryl just knocks you out. (Stories abound of parents using the stuff to manage their children on long car trips.)  Then the nurse sat with me for 10-15 minutes to see if there would be a reaction. Since it didn’t happen on the first round, it’s not likely to happen in later rounds.

I can attest to the soporific effects of Benadryl. I dozed during most of the infusion (about an hour, longer than the previous ones), and needed a nap when I got home. The energy of the happy drug isn’t enough to counteract the sleepiness, but the dexamethasone does last longer.  It makes for a bit of a roller coaster though:  Up, crash, up.

I visited again with the naturopath last week.  He’s the one who suggested the bucket of ice, and he’s added a few things to compensate for the Taxol.  He’s put me on a Vitamin D supplement (5,000 IU daily) since I’m low.  Given the climate here, that’s not surprising and there’s ongoing research looking into the connections between Vit. D levels and breast cancer and multiple sclerosis, both of which occur at higher rates in the Pacific NW.

He’s recommended substituting melatonin for the Ativan I’ve been taking at night, but I’ll have to taper the Ativan, not just go cold turkey.  I continue with the fish oil, CoQ10, and probiotic supplement. He also added L-glutamine, a gritty sort of powder to be taken twice a day, mixed in something palatable.  Glutamine supports the immune system, can help prevent neuropathy, and supposedly helps build muscle strength.  Some body builders incorporate it into their routine.  Next time you see me, I might just look like Arnold Schwarzenegger, before he became plastic.

And then there’s a jar of something called Amla Plex, an Ayurvedic concoction of Indian gooseberry and a variety of herbs that support the immune system.  Vile-looking stuff it is.  Mushy. Black.  To be spread on toast or (gulp!) eaten by the spoonful.  It doesn’t smell too bad, though, so maybe its appearance is deceiving.  I haven’t tried it yet.

And he also recommended beets.  My liver enzymes were a bit whacked out a few weeks ago.  He tells me beets are great for cleansing the liver.  Got a dirty liver?  Eat beets.

We also had an interesting discussion about that list of carcinogens I found last week.  I asked him why some elements showed up on the list but don’t appear as risk factors for a disease.  He speculated that there are powerful business/financial forces that interfere (gee, no surprise there), and used BPA as an example.  That’s the plastic softener that’s currently under fire in the U.S. and has been recently banned in Canada.  It’s used in everything from baby bottles to, as he described it, the linings of the bags that my chemotherapy drugs come in.  So I may actually be getting a (bonus?!) cancer-causing agent with my infusions.

Yep, isn’t science amazing.

Here’s hoping the cancer-inducing agents will cancel each other out…

The Politics of Cancer Drugs

Another gorgeous day with The Mountain. We’re having a lucky string of beautiful days, but it can’t be Indian summer yet (she says, fingers crossed) because we haven’t had a frost.

The happy drugs are still at work, so I feel good and managed to do this morning ALL those dastardly exercises I’m supposed to be doing every day.  I’ve been frustrated at the slow progress of regaining full arm motion and getting rid of residual numbness and pain. The surgery was back in mid-June, after all. But the physical therapist says chemotherapy slows everything down, so she thinks I’m doing fine.

The Popsicle Report:  Doesn’t matter what shade it is — light, medium or dark — green is a yucky flavor.

I passed the halfway point of chemo yesterday (yeah!) with the last infusion of the Adriamycin, and will finish off the Cytoxan this week. White cells are at 3.8, a little low, but still manageable for continuing treatment.  I should be getting a flu shot, but would like to wait till the white cells are back up into normal range.

My next lesson in chemistry comes with the drug I switch to next week — Taxol.  This drug was developed beginning in the 1960s from the bark of the Pacific yew tree (a more appealing source than the red dirt Adriamycin came from!). The original tree, Taxus brevifolia, was found in a forest north of the town of Packwood, out here in Washington, so it seems I’m in the neighborhood of its origin. But there were delays along the research road, which included fights, even in Congress, over who had fair claim to it and its trademarked name, and ecological concerns about the destruction of the trees for the sake of collecting the bark. So the drug only came into use in the late 1980s. Fortunately, alternate sources for Taxol have been developed, so the Pacific yew tree is safe once more.  Taxol is also used to treat lung, ovarian, and head/neck cancer.

The messy details of the drug’s development give some credence to the claim by pharmaceutical companies that drugs are expensive to research and produce (thus justifying their high costs), but it’s sad to see how politics and greed get in the way of important drugs reaching patients.  On the other hand, there’s the problem of drugs being released before there is sufficient follow-up data to be sure they’re safe. A recent example are the reports that are starting to surface about the Gardasil vaccine for the HPV virus. This one doesn’t affect me directly, but my daughter falls into the age group it’s being recommended for.

As with Adriamycin and Cytoxan, Taxol goes after rapidly dividing cells, so again there are the side effects of hair loss and mouth sores, along with the added possibility of neuropathy (tingling, burning and other nerve problems) in fingers and toes. The infusion will take about an hour, longer than what I’ve been having, but I don’t know if that time includes a Popsicle. There are other side effects, some of which are related not to the drug but to the solution the drug is suspended in for infusion. So along with my happy drug, dexamethasone, I’ll also have to take some Benadryl and Zantac before the infusion to prevent an allergic reaction. The nurse said she’d need to sit with me for the first 15 to 20 minutes of the first infusion to monitor for any reaction. Apparently, if it’s going to happen, it happens the first time, but not after that.  (Gee, nothing like a little heightened anxiety for making the switch.)  But she also said that, compared to the drugs I’m on now, Taxol is “a walk in the park.” Makes you wonder what kind of parks these nurses walk in.

As cancer-treating drugs go, Taxol does seem a bit safer than Adriamycin and Cytoxan, which both show up as known or probable carcinogens on the list put out by the American Cancer Society. If you want to see what else is on the list, you can find it at:  http://www.cancer.org/docroot/PED/content/PED_1_3x_Known_and_Probable_Carcinogens.asp

You’ll recognize some of the standard elements we’ve heard about: asbestos, formaldehyde, radium, and mustard gas.  But there are some surprising items listed too: betel nut, Chinese-style salted fish.  And chimney sweeps and furniture manufacturers beware — your whole profession can induce cancer.

Other cancer-fighting treatments show up on the list as well.  Tamoxifen, widely used in treating certain types of breast cancer (but not mine) is there, as is arsenic, which the infusion nurse tells me is used in minute amounts for a certain type of leukemia.  People undergoing that treatment get a small dose every day (including weekends) over the course of a year.  This idea of using cancer-inducing substances to treat cancer is a bit like the “hair of the dog” cure for a hangover. “Here, take some of what can make you sick. You’ll feel better!”  (By the way, alcohol consumption shows up on the carcinogen list too.)

Two other items that show up on the list are birth control pills and hormone replacement therapy (HRT), estrogen being the culprit behind both. If you look at lists of risk factors for breast cancer published for the general public (for example: http://www.mayoclinic.com/health/breast-cancer/DS00328/DSECTION=risk-factors), you’ll see HRT there. But the use of birth control pills is conspicuously absent from that list. So here is yet another gray area in the world of medicine and science with respect to cancer. What do we really know about the causes (because all of us with this diagnosis rack our brains trying to figure out how we got it) and why is there so much conflicting information about it?

The harder you look, the more elusive the answers.

So I comfort myself by looking at the surprising connections arising from my situation.  During a bout of warm sunny weather a few weeks back, I was basking out on the deck, head uncovered, taking care of paperwork, phone calls, etc. The hummingbirds had no interest in me this time, but the next morning I noticed my scalp was pink.  A bit of a sunburn there.  As I was describing the situation to my dad on the phone later that day, he said “Yeah, that happens to me every year.”  And in a different phone conversation, my brother admitted that he has the same problem, adding “just wait till it starts to peel.”

Never thought I’d be commiserating with my male relatives about a sunburned head.