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.

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.

The Colors of Cancer

My hummingbirds are visiting again.  Seems they come more on grey, dreary days than on sunny ones.  I’m glad to see they haven’t vacated for the season yet. The Mountain is hiding behind clouds today, but we’ve got patches of sun turning up over the water.

The Popsicle Report (and it seems I should have been capitalizing Popsicle all along.  Who knew it’s actually a trademarked name?):  Another treat yesterday — strawberry-lemon, from that same box the blueberry-lemon one came from.  I still prefer the blueberry, but this is a close second.  The brand is indeed Dreyers (not Breyers).  I hope your local stores carry these if you have a hankering for them.

I’ve got the iPod on as I’m writing, an assortment of tunes ranging from Stan Kenton, to Sting, to some old Chicago and Bonnie Raitt, mixed in with a little reggae (UB40), Brahms Liebeslieder waltzes, Bobby McFerrin, and a new assortment of Celtic women.

We’ve found another household helper to replace our college student from the summer. So now that the kids are finally back into school routines, I’m starting to actually have some blocks of time to do the self-care I’m supposed to be doing.  I worked through the exercises the physical therapist gave me with a few yoga poses this morning.  About half an hour of that and I’m ready for a nap.  I deeply envy those folks I see out riding bikes in what’s left of our good weather, and my rollerblades are looking mighty sad just sitting in the back of the van.

Yesterday was infusion #11 — one more of these and I’ll be halfway through.  This infusion went routinely, and the white cell count is staying steady with the two injections of Neupogen during the week. No major side effects at this point — just some ringing in the ears, twitches in my calves at night, and the continuing fatigue. The center was busy yesterday and I shared a “pod” with three older patients, two of them men who seem to be under long-term treatment.  They were both reminiscing with the nurse about the old infusion center, with its smaller space and chairs wedged side-by-side, and what it was like to feel the earthquake of 2001 while there.

While the nurse was installing the IV in the man next to me, she was talking about having to do so once for an anesthesiologist and feeling a little nervous about her technique.  The man asked her if many doctors had been patients there, saying that he heard doctors make horrible patients.  I turned subtly to glance back at my husband, who was seated slightly behind and to my right.  There he sat, decorously reading his medical article, and I turned back, smiling slightly to myself. Didn’t think I should get in on that conversation.

I had my own interesting discussion with the same nurse.  I’ve started to pay more attention to the many breast cancer organizations out there raising money.  The Susan Komen Foundation is probably the best known, especially for their races for the Cure, which my sister and her daughters took part in last week, but there’s probably half a dozen more, all trying to raise funds for the cause.  I wondered whether these agencies work in consort or whether they engage in the turf wars other organizations do when they cover the same territory.  The nurse stated that they may be separate agencies, but they all channel funds to the institutions doing the research and studies.

Now what percentage of the funds raised by these foundations gets channeled to research is a question for another day, and some people take issue with the corporate connections some agencies have.  For a skeptical analysis of the “breast cancer cult,” you can check out Barbara Ehrenreich’s essay from Harper’s magazine in 2001.  It’s called “Welcome to Cancerland”:

http://www.bcaction.org/PDF/Harpers.pdf.

Ehrenreich mentions several of the problems I’ve noticed, namely the ineffectiveness of mammograms as a screening tool and the social pressure on survivors to always be cheerful and upbeat.  She also points out the skewing of media exposure that makes it seem breast cancer is the primary killer of American women, when in fact heart disease, stroke and — among cancers — lung cancer kill more every year.  (More women are diagnosed with breast cancer than lung cancer each year, but lung cancer is overall more deadly.)

I couldn’t help but recall — ironically — my discussion with my English 102 students just last spring about the way media skew what we know about the world.  For emphasis, I used the symbols of the pink ribbon and the red dress, which the American Heart Association has adopted as its comparable symbol.  Every student knew what the pink ribbon stood for.  Not one knew what the red dress meant.  I chose the dress for comparison because my family has a strong history of heart disease.

Well who’s staring down that pink ribbon now?
Its image follows me like the Cream of Wheat bowl from those TV ads.

I did find that there’s an agency dedicated to women with my specific type of breast cancer: triple negative. Though this type doesn’t get as much attention as those that can be treated with hormones, we do now merit our own website:
http://www.tnbcfoundation.org/index.html.

If you’d like to support their work, you can certainly do so in my name! This group does work in concert with the Komen foundation, and assigns not one but *3* pink ribbons to their cause.

While I was waiting for the happy drugs (the 12 mg of the steroid) to kick in yesterday, I noticed the tall bookcase along the back wall of the infusion center — 10 shelves packed with thick novels and books — free reading for those who have longer infusions than mine.  (I have just enough time to get that popsicle — oops, Popsicle — down and write a journal entry.)  On top of the bookshelf is a board on which are glued ribbon loops, the Cancer Awareness Ribbons.  Not just pink, but a host of other colors for the various types of cancer:

Cream = stomach
Beige + white stripe = lung
White = skin
Yellow = bone
Half light blue, half pink = male breast cancer (you can read about that here: http://www.mayoclinic.com/health/male-breast-cancer/DS00661)
Mint green = lymph
Dark green = thyroid
Dark blue = prostate
Royal purple = pancreatic
Purple = Hodgkins lymphoma
Orange = testicular
Dark yellow = leukemia
Beige = childhood
Dark brown = colon
Black = melanoma
Gray = brain

Can’t say I’ve seen any other color but pink (women never seem to be able to escape pink).  The nurse commented that all the emphasis on breast cancer has meant that research for some of these other cancers has been pushed aside.  Ah, the politics of cancer.

Now back to musing about hair.  Yesterday, I read an article in the paper about men getting waxes to reduce hair on their backs, chests, ears, nostrils, and other anatomical parts.  Seems it’s a popular activity in some places, even the Brazilian style of waxing, and even among construction workers, police officers, firefighters and lawyers.  There I sat with my bald head (which has actually sprouted a little fuzz now) thinking how crazy is this??!

Silly humans.  Always wanting what we don’t have, not wanting what we do — and willing to go through painful procedures for the sake of vanity.

I miss my hair, though I still have my brows and lashes.
And I’m tired of the taste of baking soda from the mouth rinse.