A Little Music and Poetry with that Popsicle

Update #19 —  wow, has it really been that many, this long?  The numbers have begun to escape me, and it was the nurse yesterday who figured out that I’m halfway through the Taxol segment, 3/4 of the way through chemotherapy.  Already? And *still* going on?

The two Anna’s hummingbirds continue to visit. We’ve named the second one Teapot because it’s short and fat, like the vessel in the children’s song, “I’m a Little Teapot.”  So now we have Robin Hood and his sidekick…. Teapot.

Since I felt energetic this morning (still the steroid high) and the rain let up, I did some yardwork, and it felt wonderful to be out there in some sunshine (though I may regret this activity later).  I used to wonder why my mother enjoyed — no, thrived — on yardwork, when as a child I wondered just how many times you had to rake a yard in the fall. (At least we got the reward of roasting hot dogs and marshmallows over the burning piles in the outdoor fireplace, back when you could burn leaves.)  With my situation now, being outdoors has taken on even greater meaning — all that green life out there, and the clear air.  I took off my hat and let the breeze blow through the peach fuzz on my head.

The Popsicle Report:  The Popsicle wizard has been looking out for me this week.  When I peeked in the freezer at the infusion center, I counted FOUR boxes of the tastiest Popsicles, the boxes that harbor my favorite flavor.  This time, I thought I’d be adventurous and try a new flavor: blueberry-strawberry.  Very good, but the blueberry-lemon is still best so far.

The infusion center was a busy place yesterday, with a couple of patients going through their first rounds of chemicals and getting the initiation talk from the nurse and the Cancer Society rep.  Listening to the routine made me feel like a veteran. Already? There are far too many of us traveling this road.

The white cell count is a healthy 6.7 with one shot of the Neupogen last week, so we’ll stick with the routine of one booster a week, which should help keep me swine-flu free. That’s a good thing, since since the vaccine is nowhere to be found here for us regular folk. The red cell count continues its slow downward trend, but I seem to be adjusting OK as long as I don’t do too much.

So while I had my imitation Palmolive finger soak (thankfully no neuropathy as yet), I listened again to my iPod:

  • Jazz duets by Itzhak Perlman and Oscar Peterson
  • The Squirrel Nut Zippers, who hit the charts about a decade ago with their lively swing-style music (good for dancing, in my mind, at least, if I can’t do it while I’m soaking my fingers)
  • The mellow trombone of Tommy Dorsey
  • Some Bruce Hornsby (who gave up basketball for jazz piano)
  • Melissa Etheridge (another survivor of breast cancer who quit the Taxol part of her regimen because of neuropathy. Tough to play a guitar when you can’t feel your fingers.)
  • Just for fun: Elvis’ Blue Suede Shoes, Ricky Martin (also good for dancing), Leon Redbone, Blondie, and the Benedictine Monks of Santo Domingo, who also hit the charts about a decade ago with their CD of Gregorian chant.
  • And finally, more Paul Simon, in “Cool, Cool River,” singing this heartbreaking lyric: “Sometimes, even music cannot substitute for tears.”

While I listen to music, some people use visualization during their infusions to help their healing along.  In one of his books, Dr. Bernie Siegel describes images his patients described. One person imagined the white cells as sharks preying on cancer cells.  Others imagined polar bears or laser light, and a little boy said his were white cats pursuing the “cat food” cancer cells. A friend said she was told to think of stomping out the cancer cells with stiletto heels, while someone else imagined the chemo drugs as white knights on horses, doing their heroic battle with the cells (and winning, of course!).

This week, it was hard to miss the news from the government task force that released its guidelines on mammograms, guidelines that starkly contradict the recommendations from the American Cancer Society and practically all other breast cancer organizations (http://news.yahoo.com/s/ap/20091117/ap_on_he_me/us_med_mammogram_advice).

These guidelines made my blood, and all its resident chemicals, boil.  And then I remembered: the mammograms didn’t work for me anyway, so the new recommendation about starting mammograms at 50 would have made no difference in my case.  It does, however, make a difference for those women whose disease would be caught by mammograms during their 40s, and though the task force doesn’t think this number is significant, I suspect it would make a huge difference to the women whose lives would be affected.  As I’ve commented before, mammograms aren’t always effective, but it’s better than nothing, which is what these guidelines seem to recommend, even saying self-exams are of no use. Gee, nothing like the feeling of being a sitting duck. Given that so many women are affected by breast cancer (the popular statistic says 1 in 8, but that’s over a lifespan of 85 years), you’d think the government could come up with a better recommendation, perhaps even start looking into better methods for early detection.

OK, off my soapbox now.

In my continuing play with headwraps, I tried a public experiment a couple weeks ago. At night, after I’ve donned my pajamas, rather than put on another hat or scarf, I usually take my black shawl and wrap it around my head and shoulders, in the Middle Eastern style of the hijab. It supplies a surprising amount of warmth and privacy, if wrapped well. One morning, I met a friend for breakfast in a very public setting, the local I-Hop, and I decided to wear the hijab, wondering if there would be any reaction since it was the day after the awful shooting at Ft. Hood. In all the time we sat and chatted, not one person stared, commented, or seemed disturbed by my appearance. Who knew that a non-event could be so heartening.

It was also heartening to find a poem that reflects my desire to be in a different situation. Apparently even characters from fiction have that wish:

Fictional Characters, by Danusha Lameris
(published in The Sun magazine, November 2009)

Do they ever want to escape?
Climb out of the curved white pages
and enter our world?

Holden Caulfield slipping in the side door
of the movie theater to catch the two o’clock.
Anna Karenina sitting in the local diner,
reading the paper as the waitress
in a bright green uniform
serves up a cheeseburger and a Coke.

Even Hector, on break from the Iliad,
takes a stroll through the park,
admires a fresh bed of tulips.

Who knows? Maybe
they were growing tired
of the author’s mind,
all its twists and turns,

or they were finally weary
of stumbling around Pamplona,
a bottle in each fist,
eating lotuses on the banks of the Nile.

Perhaps it was just too hot
in the small California town
where they’d been written into
a lifetime of plowing fields.

Whatever the reason, here they are,
content to spend the day
roaming the city streets, rain falling
on their phantasmal shoulders,
enjoying the bustle of the crowd.

Wouldn’t you, if you could?
Step out of your own story
to lean for an afternoon against the doorway
of the five-and-dime, sipping your coffee,

your life somewhere far behind you,
all its heat and toil nothing but a tale
resting in the hands of a stranger,
the dingy sidewalk ahead wet and glistening.

—————————————————————

Though we may not be able to step out of our lives like these characters, we can at least dance. This group, especially the guy with the mop, makes me like the color pink again:


http://www.youtube.com/watch_popup?v=OEdVfyt-mLw

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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

The Wild West of Treatment

Well it’s been another wild week in west Olympia.  With the time off work and my part-time hired help, you’d think I’d have nothing but time on my hands.  Wish it were so.

This week’s infusion went ahead as scheduled, number two in the Taxol series, even though my white count has dropped again.  Down to 2.0, that pesky threshold number that can make or break the routine.  My doctor said it was OK to go ahead though, since the total count wasn’t below 2.0 and the neutrophils, the most important subset of white cells, were acceptable.  We don’t know the reason for the drop. Could be just the one injection of Neupogen last week (we were anticipating being able to back off these because the Taxol is “kinder and gentler” to bone marrow), could be still some fallout from the Adriamycin/Cytoxan.  Apparently, those drugs can have residual effects for up to 3 weeks after they’re stopped.

Which is why I can’t yet answer the question I’ve been asked: How is the new drug making me feel?  Seems I’m still in a transition phase.

As with last week, the premedication of Benadryl knocked me out and I had a nice nap during the infusion.  I can’t eat a popsicle while I sleep, but I’m still trying to figure out how to work the angles on that treat.  I didn’t put my hands on ice yet. The naturopath suggested it, the oncologist said he didn’t think it necessary, and the nurses can go either way.  So much for the idea of science being hard and fast.

Fortunately, the drowsiness from the Benadryl dissipated quicker — I’m told a body builds tolerance to it — so I got by without a nap at home.  I’m still on the steroid energy kick, which usually washes out around Thursday afternoon. Though the drugs have changed, I’m still taking about the same number of them, and will have a clearer sense in a couple weeks of exactly what’s happening.

I’ll continue with the Neupogen, hoping the white cells level off soon.  The night-time dose of Ativan seems to have lost its effect, so I’m making the switch to melatonin in search of that increasingly elusive good night’s sleep. Another side effect of the chemotherapy is instant menopause, with all its inherent, uh, charms. The most bothersome of these at the moment is the night sweats. Throw the covers off. Get cold. Drag the comforter back on.  Get hot.  Throw the covers off….  You’d think all that activity would count for aerobic exercise. I could work off any weight gain from a bedtime snack in no time at all.

But surely there are better ways to maintain weight. Can’t stay in the triple digits with all that activity.

Anyway, between the sweats and my son’s middle-of-the-night growing pains (those darn children — they GROW, and at the most inconvenient times), the steroid high and the Benadryl knockout, it does feel a bit like the Wild West in my body and soul this week.  Chemicals leave their mark on the psyche as much as they do on the body.

I continue to puzzle over how I came to be in this situation. I have few risk factors (70%of patients don’t have any of the standard factors) and no family history (only 15% of patients have one).  I’ve taken pretty good care of myself, done the exercise, eaten healthful foods, gotten the mammograms.  I think about where I’ve lived, possible chemical/carcinogen exposures. It’s a never-ending loop and I look for any truth in public information that can help me make sense of things.

Last week, I attended a dinner for breast cancer survivors (something I both dreaded and desired), and the keynote speaker addressed some of the psychological impact of this diagnosis. She said that everyone dealing with this disease tries to figure out what caused it, even though no one can ever tell you what lead to its development. There’s no direct link as there is for smoking and lung cancer.  But she said it’s a necessary part of the mental process once a patient receives the diagnosis, so at least I know my line of thought is normal, even though the search may be futile. As part of the process of making sense of things, I’m trying to dig below the surface of generic public information to find the truth as I am discovering it to be.

One publication that holds a tremendous amount of data is the annual report by the American Cancer Society (Cancer Facts and Figures) that shows in detail the cancer rates throughout the country by type of cancer, sex, age, geographic region and other details. If you’re interested, you can find it here:
http://www.cancer.org/downloads/STT/500809web.pdf

There’s more information than you might want, but the map alone is worth a look.  In the section on breast cancer, I found a bit of truth that has been missing from most generic public sources on the subject: the fact that having dense breast tissue can be considered a risk factor and has a definite influence on how accurate a mammogram is.  The more I’ve thought about my situation, the more irritated I’ve become with that mantra projected at women: “Get your yearly mammogram!” as though that’s the surefire way to catch breast cancer early.

I’m guessing I’m not the only woman who’s gotten caught in that gray area where mammograms fail. It’s good to finally see science starting to register dense tissue as a risk factor, but it’s still not showing up on the information that’s disseminated to the general public. I’d like to see that change. I’d also like to see better methods for catching this disease when it really is early. If breast cancer really is present for 3, 5 or even 6 or 8 years (as Dr. Susan Love believes) before it can be detected on mammograms, there has to be a way to catch the disease sooner. Mammography is not actually a form of
early detection.

Of course something patients with any illness wonder about is whether they’re getting the best care available, and that’s true for me as well. We have done our due diligence of reading and research, getting second opinions, keeping our eyes open and, fortunately, I’ve consistently come to the conclusion that I’m in good hands of care. That feeling was enhanced by an informative article in this week’s Newsweek that researched outcomes of cancer treatment at medical centers around the country. The article helps clarify the confusion about where to go and what to expect for various treatment centers. If you’re interested, you can find that article here: http://www.newsweek.com/id/218235.

A couple people have commented to me how courageous I am, going through all this. I don’t know as that courage really has much to do with it. Yes, it’s a necessary component of the journey, but when you’re put on a sudden and serious path, and it’s the only way through the forest, the journey has less to do with courage than simply doing what has to be done. Can you call it courage when there really isn’t any other choice?