Between the Drugs and the X-rays

What a difference a week makes.  Hard to believe that, less than a week ago, a decorated Christmas tree stood in our house and paper snowflakes dangled from light fixtures.  All that is gone now, with the weight of the old year (and aren’t we glad?). With weekend temperatures in the 50s here, it seems like Spring has thrown aside the old year in her rush for center stage. I even heard a frog singing last night.

My sympathy to those of you suffering freezing temperatures and snow, but it’s not often we get to gloat about being warmer than Florida.

The hummingbirds continue to come and go (they may even talk of Michelangelo), and I’m getting a brief respite before the beginning of radiation next week. The effects of chemotherapy are slowly dissipating and my energy seems to be increasing.  No cell counts, no popsicle report, and still not much hair. (A few more inches of this gray fluff that’s coming in and my daughter says she’ll loan me her hair gel to spike it.) But I have found that green tea is the next best thing to dexamethasone.

Last week I checked in with the naturopath, who’s changed the plan now that chemotherapy is over and radiation is about to begin.  I get to quit the glutamine and the probiotic, and need to stop the CoQ10 during radiation, since it’s an antioxidant that might interfere with treatment.  That leaves only the fish oil and vitamins B and D.  He was happy to see that I’ve porked up to 103 pounds.  Must have been those gingerbread cookies my sister makes for Christmas.  And those cornflake wreaths…..

Though time is passing at its usual rate (more and more quickly the older I get), I’m surprised by how quickly the mind refocuses once an unpleasant (but necessary) series of events ends. For six months I trekked to the infusion center every week to spend several hours in a chair.  Twenty-four times in and out of the parking lot, in and out of the Barcalounger, jabbed by needles and given poison. The last infusion was less than 2 weeks ago, but it seems months already.  I realized the drastic shift in focus yesterday when I went in for a mammogram.  Walking into the radiology office jerked me back into hard reality.  It was early June when my visits there began the treadmill I’m on.

The mammogram served two purposes — the 6-month follow-up after surgery, and to document the new baseline image that the radiation oncologist needs to lay her plan.  Once again, I stood by the technician as she pulled up the images on her screen — beautiful rounded shapes of wispy white on a dark background.  Hard to imagine there could be anything lethal hiding in there. She compared them with the images from last summer, with the dark spot and cluster of calcifications that signaled trouble.

I spoke with the radiologist who reviewed the images.  He assures me everything looks OK now.  But you know I can’t trust that conclusion.  We talked about the recent controversy regarding mammograms, and he readily admitted that mammograms are a poor tool, but as we all know, “it’s the best we’ve got.”  And there’s nothing else in the works to replace it.  Just to be safe, he recommends following through on the order written after surgery for a follow-up MRI, so I’m waiting to hear back from the radiation oncologist about getting that scheduled.

I did finally stumble across an article that takes down many of the myths about breast cancer, one of which is the role of mammograms. It showed up in good ol’ middle-of-the-road Prevention magazine:

If you look past the provocative lead photo, there’s actually solid information here. The article ends with a link to the Army of Women, a group established by Dr. Susan Love, whom I’ve mentioned before. The link takes you to the Army’s site, where you can sign up to be notified of clinical trials to participate in. You don’t have to have cancer to sign up.  They’re doing research on women without the disease to try to find what causes breast cancer. One of the difficulties of doing research for any disease is getting people to enroll in trials.

Speaking of other diseases, while at the grocery store checkout over the weekend, I noticed a plastic donation box on the counter.  Small, undistinguished, a clear box with a blue label indicating that it was for lung cancer. How very different it was from all the signs, labels, and products we see that are linked to breast cancer, with their bright pink labels and bold lettering. Breast cancer gets a whole month of attention in October.

But according to the Mayo Clinic, “Lung cancer is the leading cause of cancer deaths in the United States, among both men and women. Lung cancer claims more lives each year than colon, prostate, ovarian, lymph and breast cancers combined.” The CDC gives these numbers: “In 2005, 90,139 men and 69,078 women in the United States died of lung cancer.”  Do the math and you arrive at this total: 159,217 people dying of lung cancer in one year. Breast cancer claims about 40,000 lives a year. With those numbers, lung cancer deserves more than a lonely plastic box at a grocery checkout.

Here are a few more tricks with identity:

The closest I’ll ever get to being a geisha.

A friend in Japan brought these kimonos for my daughter and me in the summer of 2008.  Technically, these are yukata, the lightweight kimonos intended for summer wear.
My own version of 1920s motoring garb, taken before my hair came out.

Frog is my co-pilot.

The pink warrior. All I need is a little war paint.

If you’ve done a race or walk for the cure, you might recognize that scarf as the current signature of the Susan Komen Foundation (in partnership with the Ford Motor Company).  My sister and nieces did such a race on my behalf last summer and passsed on the scarf to me.
The closest I’ll ever get to being Jessica Simpson.

The hat, loaned to me by my mother, bears Jessica’s designer label.  I’m waiting for the paparazzi to arrive.

Many thanks to my photographers, my children, for indulging me in my experiments in identity.

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:

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:

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.