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.

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.