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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The Politics of Cancer Drugs

Another gorgeous day with The Mountain. We’re having a lucky string of beautiful days, but it can’t be Indian summer yet (she says, fingers crossed) because we haven’t had a frost.

The happy drugs are still at work, so I feel good and managed to do this morning ALL those dastardly exercises I’m supposed to be doing every day.  I’ve been frustrated at the slow progress of regaining full arm motion and getting rid of residual numbness and pain. The surgery was back in mid-June, after all. But the physical therapist says chemotherapy slows everything down, so she thinks I’m doing fine.

The Popsicle Report:  Doesn’t matter what shade it is — light, medium or dark — green is a yucky flavor.

I passed the halfway point of chemo yesterday (yeah!) with the last infusion of the Adriamycin, and will finish off the Cytoxan this week. White cells are at 3.8, a little low, but still manageable for continuing treatment.  I should be getting a flu shot, but would like to wait till the white cells are back up into normal range.

My next lesson in chemistry comes with the drug I switch to next week — Taxol.  This drug was developed beginning in the 1960s from the bark of the Pacific yew tree (a more appealing source than the red dirt Adriamycin came from!). The original tree, Taxus brevifolia, was found in a forest north of the town of Packwood, out here in Washington, so it seems I’m in the neighborhood of its origin. But there were delays along the research road, which included fights, even in Congress, over who had fair claim to it and its trademarked name, and ecological concerns about the destruction of the trees for the sake of collecting the bark. So the drug only came into use in the late 1980s. Fortunately, alternate sources for Taxol have been developed, so the Pacific yew tree is safe once more.  Taxol is also used to treat lung, ovarian, and head/neck cancer.

The messy details of the drug’s development give some credence to the claim by pharmaceutical companies that drugs are expensive to research and produce (thus justifying their high costs), but it’s sad to see how politics and greed get in the way of important drugs reaching patients.  On the other hand, there’s the problem of drugs being released before there is sufficient follow-up data to be sure they’re safe. A recent example are the reports that are starting to surface about the Gardasil vaccine for the HPV virus. This one doesn’t affect me directly, but my daughter falls into the age group it’s being recommended for.

As with Adriamycin and Cytoxan, Taxol goes after rapidly dividing cells, so again there are the side effects of hair loss and mouth sores, along with the added possibility of neuropathy (tingling, burning and other nerve problems) in fingers and toes. The infusion will take about an hour, longer than what I’ve been having, but I don’t know if that time includes a Popsicle. There are other side effects, some of which are related not to the drug but to the solution the drug is suspended in for infusion. So along with my happy drug, dexamethasone, I’ll also have to take some Benadryl and Zantac before the infusion to prevent an allergic reaction. The nurse said she’d need to sit with me for the first 15 to 20 minutes of the first infusion to monitor for any reaction. Apparently, if it’s going to happen, it happens the first time, but not after that.  (Gee, nothing like a little heightened anxiety for making the switch.)  But she also said that, compared to the drugs I’m on now, Taxol is “a walk in the park.” Makes you wonder what kind of parks these nurses walk in.

As cancer-treating drugs go, Taxol does seem a bit safer than Adriamycin and Cytoxan, which both show up as known or probable carcinogens on the list put out by the American Cancer Society. If you want to see what else is on the list, you can find it at:  http://www.cancer.org/docroot/PED/content/PED_1_3x_Known_and_Probable_Carcinogens.asp

You’ll recognize some of the standard elements we’ve heard about: asbestos, formaldehyde, radium, and mustard gas.  But there are some surprising items listed too: betel nut, Chinese-style salted fish.  And chimney sweeps and furniture manufacturers beware — your whole profession can induce cancer.

Other cancer-fighting treatments show up on the list as well.  Tamoxifen, widely used in treating certain types of breast cancer (but not mine) is there, as is arsenic, which the infusion nurse tells me is used in minute amounts for a certain type of leukemia.  People undergoing that treatment get a small dose every day (including weekends) over the course of a year.  This idea of using cancer-inducing substances to treat cancer is a bit like the “hair of the dog” cure for a hangover. “Here, take some of what can make you sick. You’ll feel better!”  (By the way, alcohol consumption shows up on the carcinogen list too.)

Two other items that show up on the list are birth control pills and hormone replacement therapy (HRT), estrogen being the culprit behind both. If you look at lists of risk factors for breast cancer published for the general public (for example: http://www.mayoclinic.com/health/breast-cancer/DS00328/DSECTION=risk-factors), you’ll see HRT there. But the use of birth control pills is conspicuously absent from that list. So here is yet another gray area in the world of medicine and science with respect to cancer. What do we really know about the causes (because all of us with this diagnosis rack our brains trying to figure out how we got it) and why is there so much conflicting information about it?

The harder you look, the more elusive the answers.

So I comfort myself by looking at the surprising connections arising from my situation.  During a bout of warm sunny weather a few weeks back, I was basking out on the deck, head uncovered, taking care of paperwork, phone calls, etc. The hummingbirds had no interest in me this time, but the next morning I noticed my scalp was pink.  A bit of a sunburn there.  As I was describing the situation to my dad on the phone later that day, he said “Yeah, that happens to me every year.”  And in a different phone conversation, my brother admitted that he has the same problem, adding “just wait till it starts to peel.”

Never thought I’d be commiserating with my male relatives about a sunburned head.

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.

Sing a Song of White Cells

Reminisce about the Mamas and Papas, and sing along if you know it:

Monday Monday, so good to me,
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn’t guarantee
That Monday evening you would still be here with me….

—————————————————————————————————–

OK, so it’s Tuesday noon, and the rest of the lyrics aren’t so cheerful, but —

Another Monday come, another chemo session gone.  Number 7 down, 17 more to go (give or take adjustments along the way).

The Popsicle Report:  Yesterday was a jackpot.  TWO popsicles, not served one after the other as before, but double-barrel.  One blue, one green, so I could even alternate between the tubes, though the green was again a really weird flavor.

“Keep it comin’, yeah, keep it comin’ now · Don’t stop it now, don’t stop it, no, don’t stop it now, don’t stop it, no …  “

The music soundtrack has again kicked up in my brain, even though I’m awake.  My apologies to all of you for a reminder of KC and the Sunshine Band.

Yesterday’s session went well.  I checked in for the usual blood draw and was glad to see my white cell count rebounding, compliments of the two Neupogen shots last week.  We finally cleared up the insurance issue, and I actually got the stuff delivered FedEx to my doorstep.  For some reason (and any of you on the list who know more about the drug-insurance system than I do, please enlighten me), since the drug is expensive, and we were planning to do the injections at home, our local pharmacy  couldn’t be authorized to dispense it, and it had to be shipped by a specialty pharmacy down in Portland, Oregon.  Now I can’t complain about the home delivery since it certainly makes things easier for me, but the confusion and restrictions seem unnecessary.

To my great good fortune, the shots did a world of good (once I got past the emotional frustration of having to take yet another drug because I have a serious illness).  My white cell count doubled over that of last week (from 2.0 to 4.0, putting me at the low end of the normal range, and making me less likely to pick up infections, I hope). Consequently, the mouth sores are rapidly improving, which does a world of good for my appetite (I might even be up for some kim-chee soon!). And I’ve got the “magic mouthwash” (that is seriously what they call it) to chase away any remnant sores.  It’s a mixture of lidocaine (for pain), an antifungal drug, and that miracle steroid, dexamethasone.  (The name of the mouthwash reminds me of a leaflet I once received from a pediatric dentist we took my son to for a filling.  The staff there gave me a list of terms I was to use to help defuse any anxiety the child might have about getting the filling. I was to call the drill a “whistle” and the nitrous oxide was not “laughing gas” but “magic air.”  Seriously.)

The downside of the Neupogen is the side effect of bone pain, primarily in the legs.  The pain stems from the action of the drug pushing the bone marrow to produce more white cells.  I had one bout of it that started around lunchtime Sunday — felt like someone had kicked me hard in the left knee with residual aching the rest of the day. Some Tylenol took the edge off, and it had disappeared by Monday morning.

The substitute doc I saw yesterday (new guy, but seasoned.  Practiced 26 years in California.  I didn’t think I should ask why he left CA.) said we can perhaps reduce the shots from 3 to 2 per week, or lower the dosage of each shot, since the white cells responded pretty well to the first two.  This is apparently an undefined area in the treatment. The chemo drugs are set dosages at set times, but the ancillary drugs prescribed to help patients get through the chemo can be mixed and matched, titrated and revised, according to what works for each patient.  This makes much more sense to me than the steamroller approach I got last week.  I never did start on the antibiotic she recommended, and this week’s doc confirmed that it probably wasn’t necessary.

I did have one bout of intense stomach pain on Friday around lunchtime.  Felt like that proverbial knife being twisted in the stomach.  Perhaps this was the excess acidity the steamroller talked about last week, but eating made the pain disappear and I haven’t had any trouble since, and have not felt it necessary even to take the OTC Pepcid we have at home.  The “grazing” approach (think like a cow, eat small amounts of food throughout the day) seems effective to keep stomach troubles at bay, and since the white cell count is up, I may be able to go back to the probiotic supplement the naturopath prescribed, which helps digestion but can’t be taken if the white cell count drops to 2.0.  I see him for follow-up tomorrow.

I have lost a few pounds in the past couple weeks, but that doesn’t worry me.  I’m currently at 98, which has been my “set point” since my teen years (except for those “weighty” times of pregnancy and working a couple summers at a Girl Scout camp downing starches in the cafeteria).  The 3 or 4 pounds I’ve lost was the yo-yo weight I’ve picked up and lost repeatedly over the past couple perimenopausal years.  My energy level is still good.  The only changes I’m noticing are some periodic sleepiness (not body fatigue, but a strong inclination to close my eyes), and some fatigue in my thighs when I walk uphill to the mailbox or the golf course.  I played as my daughter’s partner in the parent-junior golf mixer on  Saturday and we came in third.  OK, so it was only a field of four pairs in the girl’s group, but still, our score of 61 on 9 holes beat the 99 we shot two years ago.

Meanwhile, I continue with physical therapy.  The therapist said my arm function is up to about 80%.  I’ve got almost full rotation and can lift the arm above my head but not yet straighten it completely.  The therapist is another well-seasoned veteran — 36 years on the job. I am greatly appreciating those among us with years of real-world experience.

The rest of the infusion procedure went routinely yesterday, and I will see my regular doc and have the next round on schedule next week.  But now it’s time to graze again.  Moo.