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.

There is No Such Thing as Early Detection

It’s a beautiful day in the neighborhood, despite what the weatherman predicts.  Clouds over The Mountain, which has already gotten its first layer of new snow, but here it’s sunny and the water is peaceful.  The newest hummingbird came by, having made its first appearance only a week ago. His head is entirely red when it reflects the sunlight.

Back by my request:  The Popsicle Report.  A nurse friend told me to ask for the Popsicle even though it’s no longer part of the protocol.  She said a nurse could never turn down such a request.  So yesterday it was tasty strawberry on a stick. I figure if I ask for it while waiting for the blood results and before the Benadryl knockout, I can still get the treat.  Timing is everything.

The third infusion of Taxol went routinely.  Three down, 9 to go.  Last week, we did 3 Neupogen shots to bolster the white count — which is now a whopping 21.  Almost twice the high end of the normal range. So I guess maybe we can stop those shots now….

The Benadryl knocked me out again, and I kept my hands on ice packs during the infusion.  I’m feeling a periodic tingling on occasion in various fingers, but that might be my imagination.  Something like the placebo effect — they tell you it might happen so you think it does. It’s not happening regularly enough for me to connect it to the Taxol — yet.

I took a nap when I got home — the after-effects of the Bendadryl — but that was probably a mistake.  I lay awake most of last night, and more than ever, sleep deprivation is affecting my mood. I think I’m doing pretty well at keeping my spirits up but today I’m living the words of a Dave Matthews tune, “So Much to Say”:

I say my hell is the closet I’m stuck inside
Can’t see the light
And my heaven is a nice house in the sky
Got central heating and I’m alright
Keep it locked up inside
Don’t talk about it
Talk about the weather
Can’t see the light
Open up my head and let me out…
I find sometimes it’s easy to be myself
Sometimes I find it’s better to be somebody else

********
Today, I’d like to be somebody else.

I wouldn’t mind being Dmitri Shostakovich.  My daughter is practicing the piano section of his Concerto #2.  What a gorgeous piece.  Wish I could create music like that.

Been doing more research, wouldn’t you know, this being Breast Cancer Awareness month and all (no way to avoid noticing that — pink everywhere you go — but I’d rather think of it as Hispanic Culture month).  I’ve finally found a few obscure references to the discrepancies I’ve discovered in my own experience vs. general public information.

One report from the American Cancer Society briefly mentions that having dense breast tissue may be a risk factor, but I have yet to see that show up on any of the standard public lists.  Another report I stumbled across even mentioned that triple negative disease may have its own set of risk factors but does not explain what those are.  This version of breast cancer seems to be found more often in African-American women and among lower income levels.  Add that to the other factors that don’t apply — obesity, family history, etc. — and I’m wearing a shoe that just doesn’t fit.  Too bad I can’t take it back to the store and return it.

I mentioned last time my irritation with the mantra “get your yearly mammogram.”  I went back and checked Barbara Ehrenreich’s article about the breast cancer cult.  It discusses the doubts about mammograms, and was published back in 2001.  My husband passed along to me a slide show from a presentation done by a physician at the Fred Hutchinson Cancer Center up in Seattle, where we went for a second opinion.  The presentation is entitled “Screening for Breast Cancer: Uncertainties and Controversies.”  In his summary, Dr. Thomas makes this clear statement: “Mammography is the only method for breast cancer screening of proven efficacy, and it is not very good.” I don’t know the date of this presentation but he cites references from 2007.

Can’t make it any plainer than that.

And yet, and yet — we hear the mantra: Get your yearly…
Seems we ought to be hearing a change in that mantra by now.

This week on CNBC was an interview with the CEO of a company called Naviscan, describing their “new” technology to diagnose breast lumps.  Turns out it’s not really all that new: PET scans that focus specifically on breast tumors.  PET scans are already used in the staging process for cancer in general.  And again, this “new technology” is put to use only after the patient or doc finds something that needs scoping out.  Maybe it will help pin down the diagnosis more accurately than MRIs or ultrasound, but it’s still not early detection.  Makes for a catchy headline during Breast Cancer Awareness month though.

Some organizations take the approach of preventing breast cancer, which is a worthy goal, even though we don’t know entirely what causes it. Some reports say high-fat diets. One I found even blamed a high-sugar diet. I came across one that describes the Gail model, which the MD Anderson Cancer Center in Houston uses as part of its method to calculate the risk of breast cancer for patients. I’d never heard of it before, so was happy to find the online calculator here at the National Cancer Institute:

http://www.cancer.gov/bcrisktool/Default.aspx

So ladies on this list, have a go at it if you like.

Just don’t trust the results.

I calculated my risk based on my situation in May, before I discovered the lump.  According to the calculator, “Based on the information provided, the woman’s estimated risk for developing invasive breast cancer over the next 5 years is 1.3% compared to a risk of 1.2% for a woman of the same age and race/ethnicity from the general U.S. population. This calculation also means that the woman’s risk of NOT getting breast cancer over the next 5 years is 98.7%.”

Yes, well….
This shoe doesn’t fit and I want to take it back.

On the brighter side, I’ve learned a bit more about triple-negative disease.  If you search through the list of clinical trials for breast cancer, you’ll see that most have to do with hormone-receptor positive or HER2-negative tumors, and are either for patients whose cancer has metastasized or who have earlier stages than I do.  That would make you think that people like me aren’t getting equal attention, but as Dr. L, my oncologist explained, it’s only been in the past 4 years or so that the triple-negative variety has been clearly defined, so it’s not so much a matter of neglect as it is the others getting a head start.  And there’s heartening news from over the summer about the use of drugs called PARP inhibitors against the triple-negative variety.  But again, the tests have been in people with metastatic disease.  According to Dr. L, the reason most of the trials are done in people with Stage IV (metastatic) disease is because you can see quick results — the cancer either responds immediately or it doesn’t. Trials done on patients with earlier stages take longer to get results.

But now it’s time to get out of my own head and outside where the brightness is.  Tomorrow is my 49th birthday. To end, I’ll turn again to Dave Matthews, from a song called “Two Step”:

Celebrate we will
Because life is short but sweet for certain
We climb on two by two
To ensure these days continue
These things we cannot change

Chemical Cocktails Revisited

The grayness has set in and the raindrops are falling.  I knew the glorious weather of last week wouldn’t hold, but at least a few of the hummingbirds are still coming by. They do seem to come more on gray days.

I switched to the new drug routine yesterday and am waiting for the new adventures to begin. Nothing like the whiff of an illness or a change in drug routines to make you monitor every body process you’ve got going on.

The Popsicle Report:  Unfortunately, a Popsicle is no longer part of the routine.

The new drug, Taxol, isn’t as likely to induce mouth sores, so no need for the sweet treat to cool the mouth during infusion. I suppose I could put on a pathetic face and ask for one anyway (surely the nurses wouldn’t deny me?).  Or I could just live vicariously through my children.  My daughter got a Popsicle last week after her flu shot (orange).  I could probably drag my son in for a shot and a Popsicle, but he’s less willing to cooperate when it comes to needles, at least needles that are poked into him. When my husband jokingly offered him the chance to give me the Neupogen shot last week, his eyes got really big with interest.  “Can I give you the shot, Mom?”

No. No. And no.

Instead of the Popsicle, I get to plunge my hands in a bucket of ice during the infusion.  The main side effects of Taxol are neuropathy (burning, tingling, etc.) in the fingers and toes, and possibly bone/joint/muscle pain.  The principle behind the bucket of ice is the same as with the Popsicle — cool the area likely to be affected and you might diminish the side effects.

Isn’t science amazing.

The infusion procedure is similar to the Adriamycin — check in, check the blood count, and proceed as long as the numbers look OK.  My white and red cells are holding steady, though a little below normal.  The Taxol isn’t supposed to be as hard on the bone marrow as the other drugs, so I may be able to stop the injections of Neupogen, and the nurses say we don’t worry about the red cells unless I get to a point that walking across a room leaves me winded.

Next comes the happy drug, the dexamethasone, and then my chemical cocktail — a mixture of 25 ml of Benadryl and 50 ml of Zantac.  These are designed to forestall any allergic reaction to the Taxol.  Even though the Zantac is primarily used for stomach problems, it also acts as an antihistamine.  And Benadryl just knocks you out. (Stories abound of parents using the stuff to manage their children on long car trips.)  Then the nurse sat with me for 10-15 minutes to see if there would be a reaction. Since it didn’t happen on the first round, it’s not likely to happen in later rounds.

I can attest to the soporific effects of Benadryl. I dozed during most of the infusion (about an hour, longer than the previous ones), and needed a nap when I got home. The energy of the happy drug isn’t enough to counteract the sleepiness, but the dexamethasone does last longer.  It makes for a bit of a roller coaster though:  Up, crash, up.

I visited again with the naturopath last week.  He’s the one who suggested the bucket of ice, and he’s added a few things to compensate for the Taxol.  He’s put me on a Vitamin D supplement (5,000 IU daily) since I’m low.  Given the climate here, that’s not surprising and there’s ongoing research looking into the connections between Vit. D levels and breast cancer and multiple sclerosis, both of which occur at higher rates in the Pacific NW.

He’s recommended substituting melatonin for the Ativan I’ve been taking at night, but I’ll have to taper the Ativan, not just go cold turkey.  I continue with the fish oil, CoQ10, and probiotic supplement. He also added L-glutamine, a gritty sort of powder to be taken twice a day, mixed in something palatable.  Glutamine supports the immune system, can help prevent neuropathy, and supposedly helps build muscle strength.  Some body builders incorporate it into their routine.  Next time you see me, I might just look like Arnold Schwarzenegger, before he became plastic.

And then there’s a jar of something called Amla Plex, an Ayurvedic concoction of Indian gooseberry and a variety of herbs that support the immune system.  Vile-looking stuff it is.  Mushy. Black.  To be spread on toast or (gulp!) eaten by the spoonful.  It doesn’t smell too bad, though, so maybe its appearance is deceiving.  I haven’t tried it yet.

And he also recommended beets.  My liver enzymes were a bit whacked out a few weeks ago.  He tells me beets are great for cleansing the liver.  Got a dirty liver?  Eat beets.

We also had an interesting discussion about that list of carcinogens I found last week.  I asked him why some elements showed up on the list but don’t appear as risk factors for a disease.  He speculated that there are powerful business/financial forces that interfere (gee, no surprise there), and used BPA as an example.  That’s the plastic softener that’s currently under fire in the U.S. and has been recently banned in Canada.  It’s used in everything from baby bottles to, as he described it, the linings of the bags that my chemotherapy drugs come in.  So I may actually be getting a (bonus?!) cancer-causing agent with my infusions.

Yep, isn’t science amazing.

Here’s hoping the cancer-inducing agents will cancel each other out…