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.

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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