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.

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.

No Popsicle Today

The day is full of nines today.  Yesterday’s paper had an article about the auspiciousness of the number 9. In some countries, like China, it’s considered lucky.  I must have been under the Japanese influence of the number, though, which isn’t so lucky.

No popsicle report.
No popsicle.
And no infusion either.

The day was rather hectic, and the appointment rather later than usual, at 1:30.  (I like getting the infusions in the morning, so I can get the most of that steroid effect!) I felt a sense of dread as I drove to the oncology center, but couldn’t figure specifically why.  I was thinking about the last blood count and hoping the red cells hadn’t declined further. The fatigue hasn’t really increased, but I can’t take stairs two-at-a-time, as is my usual habit (not to prove anything but because I’m usually in a hurry), and when I walk up the hill that is our driveway to pick up the mail, I have to stop halfway because the strength in my legs just isn’t there.

So there I sat in the vinyl Barcalounger in the infusion center, wondering about the popsicle du jour (I admit I peeked in the freezer before I sat down to see if I could spot any blueberry lemon, but no luckl).  The nurse drew the blood sample, and as I waited for results, I looked around and noticed a woman across the room carrying the same book I’m reading currently (Harry Potter #7 — the last in the series, in which Harry finally kills his evil nemesis, Voldemort. I can identify with his struggle.).  When the nurse came back, she said we would not be going ahead with the infusion because the WHITE cell count was down. Last week it was 4.5, the low end of the the normal range for females.  Yesterday it was 1.7, a significant drop that put me below the threshold of 2.0 to go ahead with the infusion.

I can’t puzzle this out.  The 2 Neupogen shots I took at first doubled the white cells and the next two increased them even further.  Last week, I back off to one shot, and the white cells plummet and the chemo has to be delayed.  It was scary, and disappointing. (How strange to be disappointed NOT to be getting the chemicals.)  I had counted off the sessions on the calendar and found that, if everything goes according to schedule, I’d finish chemo a few days before Christmas.

I’m waiting now for a callback from my oncologist, whom I hope can enlighten me about this particular part of the roller coaster ride.  My husband gave me a Neupogen shot as soon as I got home yesterday. As he noted, this was the first time he hadn’t been with me for the session (he was busy getting the kids to their respective day-before-school-starts activities). So perhaps, besides his many other roles, he’s also my good luck charm.

The good news is that my weight is back up to triple digits. Some good pasta, trail mix, and dark chocolate helped.  I couldn’t bring myself to chug the olive oil, but my daughter’s white-chocolate-apricot-oatmeal cookies are, I believe, a suitable substitute.  The kids started back to school today — fortunately, neither has a big transition this year — and I got to soak up some solitude this afternoon.  And though I didn’t get a popsicle, I did manage to snag a tub of chocolate pudding while I waited at the infusion center.

Another book I read this week was Robert Schimmel’s “Cancer on $5 a Day.” That’s a misleading title since he doesn’t really talk about cost, but he does describe his brutal experience going through chemotherapy for non-Hodgkins’ lymphoma.  I can’t recall how I came across the book, and I’d never heard of the author before. He’s a stand-up comic, a friend of Howard Stern, and his material can be pretty raw, but his book was worth reading for the humorous (and heart-breaking) account of his experience. One of the scenes he describes is taking half an hour to shuffle 30 yards out to his mailbox only to find a renewal notice for his driver’s license, and his subsequent conversation with the officer at the DMV about why he really can’t come down to have his picture taken.

And the lightbulb went off in my bald head.
I checked my license.
It expires next month.
Rumor has it that the County has closed two of the three DMV offices due to budget cuts.  I guess this is my next big adventure.

Dive-Bombed by a Hummingbird

I’m a bit late getting this out due to the clutter on my desk and in my brain.  I just realized it’s SEPTEMBER already, and time speeds on. The sun is out.  The mountain is out (though it looks like we’ll get rained on all holiday weekend).  And I’m waiting for the handyman to come back to finish up the jobs he started earlier today.

The Popsicle Report:   Blueberry-lemon!  On a stick. I wish I knew what brand it was because I’d sure buy these.  Despite what it sounds like, it was quite tasty.

Chemo round #8 down — a third of the way through the whole chemotherapy treatment. Four more of the Adriamycin infusions and then I switch to the Taxol for 12 weeks.  I saw my regular doc, who thinks things are going along OK.  The white cell count is up again (4.5 from last week’s 4.0), so he says I can back off the Neupogen shot to once a week.  The schedule of shots is not an exact science, but becomes whatever suits the individual patient. Fortunately I didn’t have any bone pain after the shots this past week, and the mouth sores are gone.  The red cell count is low, but not yet in need of bolstering.  It does indicate anemia, though, which leads to fatigue.  I have sporadic bouts of fatigue, but nothing incapacitating — more a sleepiness than a body-tiredness. I’m also a bit irritable, but I think that’s because it’s time for my kids to get back to school (next week!).  They’ve become rather like ferrets — all over everything, full of noise and wrangling.

I also saw the naturopath last week. No changes to his plan, except he’d like me to gain a couple pounds of “reserve” weight. (“Let’s see if we can get you into triple digits!”)  He recommended eating protein, good carbohydrates (I could easily gain pounds with just a couple doughnuts!), and “good” fats — for example, nuts, avocados, and olive oil.  Jokingly, I asked if I should just chug the oil out of the bottle.  He said (with a straight face), “Well you could, but you could also do shots.”

Imagine THAT experience.

Apparently he did shots of the stuff once when he had to gain weight for a sports team. I suppose it’s no worse than Sylvester Stallone chugging raw eggs in the first Rocky movie.

Yesterday, I treated myself to an oncology massage. With all of the events over the summer, I’ve been feeling rather like the Scarecrow in The Wizard of Oz after the flying monkeys get to him.  (“They tore out my chest and they threw it over there…”)  Mammogram, MRI, ultrasound, two biopsies, CT, bone scan, PET scan, two surgeries, physical therapy, chemotherapy (and radiation to come).  I figured I deserved it.  The oncology massage is similar to a regular massage, but lighter, and the therapist incorporated some reflexology (massage of the feet) and Reiki, a sort of laying-on of hands to open energy channels in the body (an Eastern practice).  The downside was that she had to wear gloves.  Apparently there can be some skin-to-skin transfer of the Cytoxan, the other cancer drug that I take orally every day.

A couple interesting “side-effects” of the chemo that I haven’t seen mentioned in all the information I’ve been given:

One day last week, I was standing out on the back deck talking with someone on the phone when I heard a loud buzzing and looked up to see a hummingbird hovering only a few inches from my face.  My startled movement scared it off, but later that same day, it happened again.  Loud buzzing.  Fat little bird body within inches of my face. Bold little bugger, I thought.

And then I realized — the scarf I was wearing had a large red flower on it.  He had me figured for food.

The other “side effect” occurred at the gas station.  I was waiting in line to pull up to a pump and noticed the car to my right, which was also waiting and had just stalled.  The woman driving started cranking the ignition, trying to restart the car, and while I watched, I noticed the telltale headscarf tucked neatly and completely down over her ears and the nape of  her neck.  I put down the passenger-side window and asked her if she needed help. (No way should someone have to deal with cancer, chemo AND a stalled car.  That’s just not fair.)  She thanked me but said no, that the car would start in a few minutes, and sure enough, it did.

We both rolled up to our respective pumps, and while we were waiting for the tanks to fill, she came over to me and asked if she could assume that my headscarf meant the same thing as hers — going through chemo.  I told her yes, I was going once a week and she said, “Oh, yours must be breast cancer.”  I puzzled over how she put those pieces together (maybe breast cancer is the only once-a-week regimen?), and she said she’d just finished chemo.  “Mine’s ovarian,” she said. “I’ll trade ya!”

Fortunately, I long ago developed the ability to disconnect what my brain thinks from what my mouth says at critical moments like these.  My brain said, “No way!” while my mouth changed the subject. You see, there’s a continuum of cancer. On one end are the noninvasive ones that grow slowly, can be removed easily and never return.  On the other end are ones that give little notice, grow swiftly, can’t be detected early, or are relentless, like the brain tumor that just claimed Ted Kennedy’s life.  Breast cancer has the same   stages as other types of cancer (I to IV), and even a Stage O.  Sometimes it is detected early, sometimes not, sometimes it’s aggressive, sometimes not. Ovarian cancer, on the other hand, can be fairly aggressive and is often not detected until it’s advanced, and so the fact that this woman could joke in such a way with me at the gas pump was a remarkable testament of her spirit.

When I changed the subject, we talked about wigs, insurance, and skirted across a number of other health-related topics.  She said that she knew of a number of people (“like you,” she said) who had followed all of the rules of staying in good health and ended up with cancer anyway.  As I drove away, I was both happy and horrified.  Happy that I could bond with someone just on the basis of a headscarf.  Horrified that I could bond with someone over the reason for the scarves. They mark our inclusion in a group neither of us wants to belong to.

An odd and unpredictable journey.  That’s what this is.