Signposts in the War Zone

La jungle de Langkawi

Image via Wikipedia

When describing the emotional effects of getting a cancer diagnosis, Michael Lerner of the Commonweal Cancer Help Program put it this way: “Receiving a cancer diagnosis is like a soldier being dropped into a jungle war zone without a map, compass or training.”

An apt description.

Except that a soldier at least has weapons.

Thankfully, in the jungle war zone of cancer are guides, who appear in various forms: the oncologists and radiation specialists who direct your treatment, the infusion nurses who explain what will happen along the way, fellow patients and cancer survivors who can tell you their stories and really understand what you might be experiencing. They have cleared your path through the jungle.

But also along that path are a variety of signposts, some helpful, some not, and it is often only in hindsight that the value of those signposts is clear.

Unfortunately, some of the signs that the experts post on the jungle path point the wrong way.  For example, a recent report from the Yale Cancer Center determined that between 10% and 20% of breast cancers classified as estrogen-receptor-negative might actually be positive. In an already chaotic landscape full of noise and confusion, such a misdiagnosis only heightens your fear and sense of helplessness, and can add a hefty measure of anger that you carry with you as you retreat to find the right path.

At other times, a signpost might be erected only to be taken down later on. Earlier this year, the FDA revoked its approval of Avastin for patients with breast cancer, saying that it was not safe or effective.  Avastin is a chemotherapy drug used to treat a variety of cancers, but according to the FDA, the risk-benefit ratio for those with breast cancer doesn’t merit use of the drug. So those who had luck in following this signpost no longer are able to, and that includes the women with triple-negative cancer who did benefit from its use. This dilemma, however, applies only to women on the jungle path in the U.S.  Avastin is still approved for use in breast cancer patients in 84 other countries.

Sometimes, a signpost is erected too soon and serves only to provoke anxiety. A report from the UCLA Medical Center links high levels of stress to the spread of cancer. Besides inducing more stress about stress, the additional irony is that this signpost is only for mice as yet, not humans. So too for the signposts about the effects of ACE inhibitors and beta-blockers and chondroitin sulfate.

There’s something to be said for posting signs of hope along the path, as these reports do with their results. But with that hope comes the risk of disappointment when the findings of further studies serve to dismantle these signposts.

And always, along any path, some signposts might even be missed.  Back in June, a briefing in the journal Cancer reported that almost half of women with advanced breast cancer over the age of 65 “are not receiving post-mastectomy radiation treatment, despite the publication of major guidelines recommending the therapy.”

On my particular path through the jungle, two signposts directed the type and frequency of my chemotherapy.  At the time I underwent chemo, the largest signpost read ACT – Adriamycin, Cytoxan, and Taxol – the only chemo cocktail available for those of us with triple-negative disease.  By the time I had chemotherapy, however, a new signpost had been added to this one, and it read “dose-dense therapy,” a different way of administering the drugs.  Instead of receiving one large dose of drugs every 3 weeks, as is customary for many types of cancer, I received a smaller dose every week for 24 weeks.  The premise of this “metronomic” dosing is that the cancer would have less of a chance to regenerate with a steadier dose of drugs and the side effects would be minimized. I followed these signposts because my guide, my oncologist, pointed me that way.

In hindsight, it’s been a relief to find that these two signposts did indeed have merit.  A study of Adriamycin and Cytoxan, from a group of drugs called anthracyclines, used in conjunction with a taxane drug are an effective treatment for triple-negative disease, but not for other types of breast cancer. The review noted that the combination works best in adjuvant treatment—that is, chemo after surgery (rather than before) – the approach the doctors used for me. Another study determined that dose-dense chemotherapy is most effective for hormone-negative breast cancer, with better overall and disease-free survival. These studies validated the merit of two of the signposts on my path. With a sigh of relief, I can walk a little taller on the road.

Those of us affected by cancer, either directly or indirectly, will always be in the jungle because cancer and the treatments for it are always changing, always confusing, and it’s difficult to get your bearings. We note the signposts and choose the direction, our only weapons the health care workers who point the way and our own stamina and determination.

Wegweiser im Bramwald

Image via Wikipedia

 

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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.

Life Amid the Treatment

I”m a bit late getting this out. Goodness, December already.  Feels like it outside today, and the mountain is obscured by clouds. Lots of snow up there and the ski resorts opened early this year.

Teapot dropped by for a quick lunch just now, and the Jehovah’s Witness found his way to my door this morning to leave me his message and a couple of Watchtowers to read. I’m slurping down some homemade vegetable soup a gracious neighbor brought, trying to be conscious of eating healthful things, though I must confess I snarfed down some potato chips a couple days ago (salt and vinegar). Good thing I don’t work at the Cleveland Clinic.  An article in the current Newsweek notes that the CEO has banned potato chips from the vending machines there, and he actually refuses to hire people who smoke. At least he’ll keep employees from freezing to death on smoke breaks during those cold Cleveland winters.

The Popsicle Report:  I felt like branching out.  Same brand, different flavor: strawberry lemon.  Pretty darn tasty.

On the iPod, in addition to the regulars, was Cecilia Bartoli singing Bizet songs in her nimble, gorgeous voice; Moby, who’s nimble in a different way; Charlie Barnet and some big band music; Trout Fishing in America, a classically trained duo now playing family music; and Gato Barbieri, an Argentinian tenor saxophone player of free jazz, who had a Muppet fashioned after him.

Speaking of Muppets, they do a grand interpretation of Queen’s Bohemian Rhapsody here: http://www.youtube.com/watch?v=yVB4kUK6UY8

Beelzebub has a muppet set aside for me.

Infusion #20 down (#8 of the Taxol), 4 more to go. White cell count is above normal at 15, meaning I can probably skip that Neupogen shot this week. The red cells are still quite low at 8.7, but increased from the 8.4 of last week, so the B vitamins must be doing their work. No sign of neuropathy or any new problems beyond what I’ve had so far. My fingernails have more spots, but I haven’t lost any, something the naturopath warned me could happen. I just have to keep on keepin’ on, trying to finish the chemo part of the treatment by the end of the year.  After the New Year comes 6 weeks of radiation, but I’m not able to wrap my brain around what that entails just yet.

The infusion center was quite lively this week.  I was anchored to the Barcalounger in the far back corner. Not much of a view out the window, but a direct line of sight to the large stainless steel box that warms the blankets they put over patients, and the tall stack of colorful fleece blankets someone had donated for the season. In the opposite corner of the room, a man reclined in his chair while talking with the Cancer Society reps. about what it would be like to go up to Seattle for a stem cell transplant, as he would be doing soon. The male rep. described his harrowing experience of several years ago, about how they used the chemotherapy to wipe out his immune system so they could do the transplant, how he was in the hospital for 3 months.  But there he stood, if not hearty, well very much alive, and I was again reminded of how much more some of these patients have had to experience than I have.  President Nixon signed the National Cancer Act into law back in 1971.  Thirty-eight years later, cancer is still with us, but there are numerous veterans of the war still here too.

Next to the man preparing for the stem cell transplant sat an elderly woman hunkered down in her wheelchair, getting ready for her 5-hour session, peering out at the room through large glasses that over-magnified her eyes.  She seemed frail, needing help to go to the bathroom, but she was definitely of strong mind. When another man joined her pod, she asked the nurse if she could be moved elsewhere because her area was too full of men.  I told the nurse that the lady, Jean, could come sit near me, but she had to keep her assigned place since all chairs in my pod were already reserved. The best the nurse could manage was to turn Jean so she could see over into my pod.

As I was waiting for my blood count to come back, a tall thin man with gray hair took a seat in one of the chairs opposite me. He wore a black baseball cap stitched with gold letters spelling out US Army, a dark T-shirt, and jeans. With him came his wife, a small stout woman neatly dressed in subtle shades of brown and cream. As soon as he entered the pod, the man began to joke loudly with the nurse who takes vital signs, saying he didn’t like her new hair color and she ought to change it back from brown to blonde. And so began a conversation about hair (he’d lost his too in the previous 3 years he’d been coming to the center), during which I noticed the man was missing his top front teeth. I asked the man if he knew how much time and money it took for a woman to be a blonde. Indicating himself, he responded, “Well we pay for it, so we should be able to say what color it is!”  His wife sat beside him smiling serenely. Her hair was strawberry blonde.  When he got up to leave after his blood draw, he gently took his wife’s hand as they moved out into the passageway.

A little while later, Jean’s granddaughter came to sit with her during the infusion. They talked awhile about the confusion of Jean’s transportation that morning (a van had come to pick her up before the granddaughter was scheduled to do so), and then the granddaughter pulled out the Trivial Pursuit game sitting on the shelf nearby.  As she started to read questions from the cards, the men in the pod perked up and began answering, and I chimed in with a few answers as well. (Quick now, the City of Light is ______.  And what was the fate of the three blind mice?).  Jean perked up considerably during the game and fell into conversation with the men about movies they had seen, and a new book that had come out. Maybe she decided men weren’t so bad if they knew answers to trivial questions.

So you see, life goes on even in the midst of serious illness.  And illness incorporates itself into everyday life.  Those of you dealing with chronic illness know this more than I.  Doing a weekly update about my health might indicate that cancer has taken over my life. As a matter of fact, when my internist called back in June to check in with me, she said, “Managing this disease will be a full time job.” (This was one of many times in life my brain consciously refused to believe the words I’d just heard.) It seemed that way at first with the appointments, the surgery, and even now it takes more time to deal with than I like.

But just how much of your life should any chronic illness — or any other life issue — take up?  Initially there are the cycles of grief, loss, anger, bargaining and numbness that you need to go through, and that recur even years later.  Yes, I’m spending a  lot of time reading and thinking about cancer in general and breast cancer specifically. This week, I’m puzzling over the news of a woman winning her lawsuit against the manufacturer of Prempro, that one-time popular hormone replacement therapy. She ended up with breast cancer and the jury has awarded her 3.5 million dollars. And I wonder: what’s the difference between hormone replacement therapy, which is now implicated as a cause of breast cancer, and birth control pills, which don’t appear on the lists of risk factors for getting the illness.

This disease caught me by surprise, sneaking up on me without warning while I was planning for heart disease, osteoporosis, hypertension, or any of those other illnesses that show up in my family tree. But every morning there are the two runs to the bus stop for the kids, managing appointments, mail, and phone calls (even scheduling the plumber and talking with the piano teacher during the infusion session), meals and dishes, cleaning out gutters, supervising newspaper students, preparing for my daughter’s birthday, planning holiday events. The illness has obviously made time for me, but I don’t have time for it. (Oh, go ahead, quote John Lennon if you must.)

But while we’re on the subject of time and seasons —

While putting away our Thanksgiving decorations this week, my son and I were taking down the garlands of shiny fall leaves we’d wrapped around the stair banisters.  The garlands are old and the leaves sparse, and as we worked more leaves fell off, leaving mostly a long shiny string bereft of foliage. I commented to him that maybe we should just get rid of the garlands, since they are so bald now.

He responded, “Not as bald as you, mom!”

Nothing like a 9-year-old to keep things real.

Here’s an inventive musical interpretation to start your Christmas season right:
http://www.metacafe.com/watch/2825215/glass_harp_dance_of_the_sugar_plum_fairy_tchaikovsky/

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.

A Little Music and Poetry with that Popsicle

Update #19 —  wow, has it really been that many, this long?  The numbers have begun to escape me, and it was the nurse yesterday who figured out that I’m halfway through the Taxol segment, 3/4 of the way through chemotherapy.  Already? And *still* going on?

The two Anna’s hummingbirds continue to visit. We’ve named the second one Teapot because it’s short and fat, like the vessel in the children’s song, “I’m a Little Teapot.”  So now we have Robin Hood and his sidekick…. Teapot.

Since I felt energetic this morning (still the steroid high) and the rain let up, I did some yardwork, and it felt wonderful to be out there in some sunshine (though I may regret this activity later).  I used to wonder why my mother enjoyed — no, thrived — on yardwork, when as a child I wondered just how many times you had to rake a yard in the fall. (At least we got the reward of roasting hot dogs and marshmallows over the burning piles in the outdoor fireplace, back when you could burn leaves.)  With my situation now, being outdoors has taken on even greater meaning — all that green life out there, and the clear air.  I took off my hat and let the breeze blow through the peach fuzz on my head.

The Popsicle Report:  The Popsicle wizard has been looking out for me this week.  When I peeked in the freezer at the infusion center, I counted FOUR boxes of the tastiest Popsicles, the boxes that harbor my favorite flavor.  This time, I thought I’d be adventurous and try a new flavor: blueberry-strawberry.  Very good, but the blueberry-lemon is still best so far.

The infusion center was a busy place yesterday, with a couple of patients going through their first rounds of chemicals and getting the initiation talk from the nurse and the Cancer Society rep.  Listening to the routine made me feel like a veteran. Already? There are far too many of us traveling this road.

The white cell count is a healthy 6.7 with one shot of the Neupogen last week, so we’ll stick with the routine of one booster a week, which should help keep me swine-flu free. That’s a good thing, since since the vaccine is nowhere to be found here for us regular folk. The red cell count continues its slow downward trend, but I seem to be adjusting OK as long as I don’t do too much.

So while I had my imitation Palmolive finger soak (thankfully no neuropathy as yet), I listened again to my iPod:

  • Jazz duets by Itzhak Perlman and Oscar Peterson
  • The Squirrel Nut Zippers, who hit the charts about a decade ago with their lively swing-style music (good for dancing, in my mind, at least, if I can’t do it while I’m soaking my fingers)
  • The mellow trombone of Tommy Dorsey
  • Some Bruce Hornsby (who gave up basketball for jazz piano)
  • Melissa Etheridge (another survivor of breast cancer who quit the Taxol part of her regimen because of neuropathy. Tough to play a guitar when you can’t feel your fingers.)
  • Just for fun: Elvis’ Blue Suede Shoes, Ricky Martin (also good for dancing), Leon Redbone, Blondie, and the Benedictine Monks of Santo Domingo, who also hit the charts about a decade ago with their CD of Gregorian chant.
  • And finally, more Paul Simon, in “Cool, Cool River,” singing this heartbreaking lyric: “Sometimes, even music cannot substitute for tears.”

While I listen to music, some people use visualization during their infusions to help their healing along.  In one of his books, Dr. Bernie Siegel describes images his patients described. One person imagined the white cells as sharks preying on cancer cells.  Others imagined polar bears or laser light, and a little boy said his were white cats pursuing the “cat food” cancer cells. A friend said she was told to think of stomping out the cancer cells with stiletto heels, while someone else imagined the chemo drugs as white knights on horses, doing their heroic battle with the cells (and winning, of course!).

This week, it was hard to miss the news from the government task force that released its guidelines on mammograms, guidelines that starkly contradict the recommendations from the American Cancer Society and practically all other breast cancer organizations (http://news.yahoo.com/s/ap/20091117/ap_on_he_me/us_med_mammogram_advice).

These guidelines made my blood, and all its resident chemicals, boil.  And then I remembered: the mammograms didn’t work for me anyway, so the new recommendation about starting mammograms at 50 would have made no difference in my case.  It does, however, make a difference for those women whose disease would be caught by mammograms during their 40s, and though the task force doesn’t think this number is significant, I suspect it would make a huge difference to the women whose lives would be affected.  As I’ve commented before, mammograms aren’t always effective, but it’s better than nothing, which is what these guidelines seem to recommend, even saying self-exams are of no use. Gee, nothing like the feeling of being a sitting duck. Given that so many women are affected by breast cancer (the popular statistic says 1 in 8, but that’s over a lifespan of 85 years), you’d think the government could come up with a better recommendation, perhaps even start looking into better methods for early detection.

OK, off my soapbox now.

In my continuing play with headwraps, I tried a public experiment a couple weeks ago. At night, after I’ve donned my pajamas, rather than put on another hat or scarf, I usually take my black shawl and wrap it around my head and shoulders, in the Middle Eastern style of the hijab. It supplies a surprising amount of warmth and privacy, if wrapped well. One morning, I met a friend for breakfast in a very public setting, the local I-Hop, and I decided to wear the hijab, wondering if there would be any reaction since it was the day after the awful shooting at Ft. Hood. In all the time we sat and chatted, not one person stared, commented, or seemed disturbed by my appearance. Who knew that a non-event could be so heartening.

It was also heartening to find a poem that reflects my desire to be in a different situation. Apparently even characters from fiction have that wish:

Fictional Characters, by Danusha Lameris
(published in The Sun magazine, November 2009)

Do they ever want to escape?
Climb out of the curved white pages
and enter our world?

Holden Caulfield slipping in the side door
of the movie theater to catch the two o’clock.
Anna Karenina sitting in the local diner,
reading the paper as the waitress
in a bright green uniform
serves up a cheeseburger and a Coke.

Even Hector, on break from the Iliad,
takes a stroll through the park,
admires a fresh bed of tulips.

Who knows? Maybe
they were growing tired
of the author’s mind,
all its twists and turns,

or they were finally weary
of stumbling around Pamplona,
a bottle in each fist,
eating lotuses on the banks of the Nile.

Perhaps it was just too hot
in the small California town
where they’d been written into
a lifetime of plowing fields.

Whatever the reason, here they are,
content to spend the day
roaming the city streets, rain falling
on their phantasmal shoulders,
enjoying the bustle of the crowd.

Wouldn’t you, if you could?
Step out of your own story
to lean for an afternoon against the doorway
of the five-and-dime, sipping your coffee,

your life somewhere far behind you,
all its heat and toil nothing but a tale
resting in the hands of a stranger,
the dingy sidewalk ahead wet and glistening.

—————————————————————

Though we may not be able to step out of our lives like these characters, we can at least dance. This group, especially the guy with the mop, makes me like the color pink again:


http://www.youtube.com/watch_popup?v=OEdVfyt-mLw

You Look MAHvellous

The rains have set in, but still two hummingbirds come to dine, and these two actually shared the feeder rather than picking a fight with each other. (Hummingbirds are beautiful, but they are not kind to one another.) These are Anna’s hummingbirds — a male with the brilliant red head, whom we named Robin Hood, and a more modest-colored female.  Anna’s don’t necessarily migrate for the winter, and I’m looking forward to keeping their company. The other four that appeared over the summer, Fred and his compatriots, are Rufous hummingbirds, which fly to warmer places to wait out this dreariness.

The Popsicle Report:  Today’s flavor: chocolate pudding. Those same aged tubes I saw last week are still there.  So I opted for the pudding in the refrigerator.

Leaves still cling to the huge tree outside the infusion center.  Today was infusion #5 of the Taxol — 7 more to complete the total 24 weeks of chemotherapy.  The process was almost too routine.  As I drove over to the center, I felt as if I were going off to work, the way the kids go off to school.  Blood draw, wait for results (white count 13, 2 points above the normal range, with two home injections of the Neupogen last week), drink my green tea. It’s as John O’Donohue remarks in his short essay “The Question Holds the Lantern”: “Eventually, even the strangest things become absorbed into the routine of the daily mind with its steady geographies of endurance, anxiety, and contentment.” The essay describes exquisitely the transformation a person goes through when confronted with a crisis. You can find it on O’Donohue’s beautiful website: http://www.johnodonohue.com/reflections/.

And then, as often happens, I recall why I’m there in the Barcalounger listening to the beeping of IV machines. Their coded alarms distinctly remind me of my teenage days spent working at McDonald’s, learning the particular squawks of the french fry vat, the bun toaster and the fish fryer. I instantly try to shut out the thought of why I’m sitting there by distracting myself.  Robert Schimmel comments on this need for distraction in his book, “Cancer on $5 a Day.” That need likely applies to all of us when confronted with something larger than we are.  When you’re on a course not of your choosing with no alternative, distraction is essential.

So today’s selections from my iPod ranged from Sting, back when he was with The Police, to Tony Bennett, to old Elton John and Paul Simon (always a favorite), to James Taylor’s “Fire and Rain” with that gorgeous cello line, to Aaron Copland’s “Billy the Kid” and a little “Bungle in the Jungle” from Jethro Tull.

No new or different symptoms from the Taxol so far, though it does seem to be aggravating the area under my left arm that was affected by surgery — an area of numb hardness that increases and decreases based on my level of activity.  One therapist thinks it’s the effect of Taxol on the nervous system.  Perhaps I should immerse this portion of my body in the ice-water bath during infusion, but I don’t think the infusion staff would approve of that.

This morning, as I was getting ready for the day, I ran a comb over my head, just to reminisce.  I could almost feel the weight and pull of my hair as it used to be, even though what’s there now is just some white fuzz.  But at least the fuzz blows in the breeze, as I discovered while zipping around the house with a bare head. (Despite what the numbers say about my low red cell count, my energy level is better. Amazing how the body adapts.)

I’ve gotten quite used to the head coverings, and have quite a collection of them now. Hats (both practical and silly), scarves, and longer pieces I can wrap into turbans. Sometimes I forget I have one on.  If I’m in a place where I’m anonymous, the headcovering poses no problem.  Downtown, many people look a lot stranger than I do in my headwrap. I don’t have any piercings or tattoos, so even a turban looks rather conservative. Someone told me that I could even wear the green metallic wig my mother sent in certain parts of town and actually get hit on.

But a problem arises when I’m in smaller, familiar settings.  A few weeks ago, during the handshake of peace during church service, an older gentleman shook my hand in the regular fashion, saying “peace be with you.”  And then, for a fraction of a second, he put his other hand on top of mine and said, “God bless you.”  And suddenly, I was jerked back to my reality and had trouble maintaining my composure.  I know he meant well, but for just a few moments I had forgotten that reality.  My headcovering gave me away.

And that’s one of the side effects they can’t tell you about at the doc’s office — the response you may get from others.  Some people never notice, some do but don’t know what to say, some jump in full force, change their tone of voice, and look at you sadly.  Some wait for you to bring up the topic because they’re not sure if you want to talk about it.  Interactions can turn into awkward dances, with neither of us in the dance knowing which way to step for fear of offense.

A comment I hear often is “You look good.”  These words are offered with the best of intentions, and I do appreciate them (though I was never one to worry too much about how I looked — as my mother can attest). But then I find myself wondering — did I *not* look good before? A couple people have asked me what might be the appropriate way to respond.  I can’t speak for anyone else (cancer and chemotherapy are such vastly different experiences for each person), but consider this: If you want to comment on my appearance, don’t just tell me I look good.  Take a page from Billy Crystal and say “You look MAAHH-vellous!”

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.