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.

Of Saints and Omens

The Popsicle Report: It was popsicle time again at the infusion center yesterday.  And my favorite: blueberry-lemon.  The nurse even asked if I preferred a particular type (before, I just took whatever they brought me).  She brought over the box for me to see. So any of you interested in tracking some of these down can look for Dreyers (or was it Breyers?) real fruit bars. Other flavors in the box are strawberry-orange and strawberry-lemon.

Several other bits of good news to report:

My weight remains in triple digits, a state that might have been helped along by a slice or two of that luscious tiramisu cake a friend sent.

When I drove by my mailbox (you remember, that one at the top of the hill) on Saturday, I found the magic postcard that told me I could renew my driver’s license online.  I consider it my “get out of jail free” card.  That very afternoon, in a few minutes, I renewed the license, which means I won’t have to figure out the proper headgear for a 4-hour wait and a photo in a crowded office.  How convenient.  But it does bring up the question of license fraud.  How do the agents know if the person registering online is really who she says she is?

The third bit of good news is that, with the 3 Neupogen shots last week (and only a mild aching in my hips and legs after the third one), my white cell count rocketed up to a whopping 6.5, smack in the middle of the normal range.  The nurse told me that the drastic decline of last week isn’t uncommon and occurs as the cumulative effects of the chemo set in.  Sometimes the bone marrow just needs some time to catch up.  The dangerous territory is when it drops below 2.0.  That’s when I need to be careful about being in crowds or among sick people.  The problem is that you can’t feel your white count dropping (as you can feel the fatigue with the drop in red cells), so you don’t know when it bottoms out and no one takes a daily reading.  So much about science and medicine is impressive, so much of it is still guesswork.

The increase in the white count comes not a moment too soon. Yesterday, my son came home from school with a sore throat, runny nose and low fever.  I’m keeping him home today (where he is engrossed in building yet another Lego version of a spaceship), and when I called him in sick, the school office wanted to know what specific symptoms he had.  They are, of course, worried about swine flu.  My daughter said said 3 kids were out sick from every one of her 7th-grade classes yesterday.

I’m working hard not to let fear take over my days, which would be all too easy with the media reports on the flu and my current health status. The media tend to focus on topics that grab attention, and this could very well (we hope) turn out the way the Y2K scare with computers did 9 years ago.  My brain knows this, but still the doubts and fears creep in. So to keep an even keel, I remind myself that fear is real, but it is not fact (in the same way that food is not love).  Fearing an event does not mean that event will actually occur.   And I try to take the Buddhist approach — be here in the ever-present now — the lesson we all struggle to remember.

That’s not to say that I haven’t gathered a few protections and comforts about me during this trek.  I keep on the kitchen counter the stack of cards and notes people have sent in the past months as a reminder of how many people care and are looking out for me.  When I feel particularly vulnerable, I wrap myself in one of the prayer shawls given to me. It helps to know I am on several prayer lists: Lutherans in Skokie, Methodists in Detroit, and Catholics and Presbyterians in my hometown in Ohio. It doesn’t matter to me which denomination the prayers go through. I figure they’ve all got a direct line. It’s not about dogma, but intent.

Around my neck hang several talismans, tokens, totems, good-luck-charms, medals, whatever term you prefer.  On one chain are medals of St. Anthony, patron saint of miracles, and St. Peregrine, patron saint of cancer patients.  (Those Catholic saints can get pretty specific assignments.)  I’d like to add a medal for St. Martin (patron saint of the university where I work and St. Jude, whose feast day is my birthday (Oct. 28), and for whom my mother named me.  He is her favorite saint, and she says that people tend to confuse him with “that Judas guy.” Those of you who know of him (one of the orginal 12 apostles; the famous children’s hospital in Memphis is named for him), perhaps know that he is the patron saint of hopeless cases. I have to say I’m not fond of that image, and told mom that I’m certainly not hopeless. (She laughed and said, “well, no!”)  What’s lesser known is that he is also known for perseverance in the face of adversity, and it is under that quality that I’m claiming him.  When I spoke to Mom last night, she told me that she was drinking a Manhattan and talking to St. Jude on my behalf.  Now I don’t know in which order she was doing the drinking and chatting, but I gladly encouraged her to keep it up.

One other totem hangs on a leather cord about my neck. It is a small turtle — a body of white stone with a green etched shell.  When I first got the diagnosis and was talking with my son about it one evening before bed, he got up, went over to his little treasure box, and pulled out this turtle, which he had picked out a year ago as his souvenir from our trip to the beach in Oregon.  He hung it around my neck and told me I could borrow it until I’m better.  I’ve worn it every day since then.  Rumor has it these critters can live for up to 150 years.  I take that as a good omen.