Puzzle Pieces

I just caught the opening of the Seattle Seahawks/Chicago Bears playoff football game. I’ve lived near or in both cities, but I’m only one of those fair-weather fans. Out here, we’re all stunned that the Hawks have gotten as far as they have this year. But after I saw the Bud Light ad, with the guys partying in the oil change shop, I figured I’d be better off writing.

This is a column of updates and more pieces to add to the triple-negative breast cancer puzzle.

First, the personal updates:

I had my last 3-month check-up back in November and everything seems to be fine. That abdominal pain I was having turned out to be – besides another trip on the worry train – just a bladder infection. The naturopath has again tweaked the supplements (add vitamin B, drop the CoQ10). At my appointment with him, we discussed our preferences for martini recipes. He prefers gin with a twist AND an olive. Rumor has it that he’s also been known to eat a Pop Tart on occasion. It’s good to know he’s human.

The chemotherapy port was removed before Christmas, and it’s nice not to have that lump on my chest anymore, even if I had to give up a day of skiing to recover properly. The sacrifice let me finish grading essays for my classes, and I am back to teaching again as of this week. We celebrated my daughter’s 14th birthday, Christmas, and New Year’s, and I managed to trigger a mistrial during jury duty in November, all because of some M&Ms. (More on that story later on my other blog, Firefly.)

Here are the news updates from the Breast Cancer Symposium in San Antonio in December:

  • PARP inhibitors still seem promising in treating patients with metastatic triple-negative disease, and there’s more and more evidence that hormone replacement therapy is tied to the development of breast cancer.
  • Obesity negatively affects survival for those with hormone positive tumors, but not for hormone-negative. (Guess I can start gaining weight now.)
  • In the past 10 years, cases of triple-negative disease have almost doubled in women in Brazil while cases of hormone-positive cancer have decreased, though no one knows why.
  • The FDA has pulled the plug on the use of Avastin – a chemotherapy drug – for breast cancer patients, but Avastin shows greater promise in those with triple negative disease. Avastin is also used in patients with other types of cancer.

 

And now the puzzle pieces.

A recent article in the New England Journal of Medicine charted the overlap between triple-negative, basal and BRCA-1 breast cancers. The authors found that triple-negative tumors can also be basal, but aren’t always. They are also often associated with the genetic defect of BRCA-1, but not always. BRCA-1 (often pronounced Brack-ah 1) is the more serious of the two types of genetic defects found in breast cancer (the other being BRCA-2), and can be implicated in ovarian cancer as well. This article got me wondering whether to look into genetic testing for my situation.

As I mentioned many posts ago, I don’t have much of a family history of breast cancer. (Despite what the media lead you to believe, it’s only about 15% of women who do have that family history.)  It appeared only in my maternal grandmother – somewhere back around 1970, long after she went into menopause.  Like most women at that time, she had a total mastectomy and doctors didn’t know anything about hormone receptivity.  She did not have chemotherapy or radiation and lived another dozen years till her death at the age of 85. This illness has not shown up in any of my close relatives. Given that I come from a Catholic family, there’s a lot of relatives (8 aunts/uncles and about 35 first cousins). The recent research shows, though, that it’s not just a pattern of breast cancer that gives away the genetic problem, but a pattern of prostate cancer too.

A misconception is that breast cancer passes through the mother’s side of a family, but this article from Parade magazine shows that the genetic defect often passes through the male line, showing up as either breast cancer (1970 new cases a year) or prostate cancer. A friend of mine followed her instincts when she received her diagnosis at the age of 41. The docs told her there didn’t seem to be a genetic component, but once she investigated she discovered that her paternal grandfather had died of prostate cancer in his 50s. Not only did the gene pass through the male line to her, but it skipped a generation too.

As screening methods evolve – not just for cancer but any serious health issue — it becomes increasingly important to have as full a picture of your family history as possible. There are a number of online tools you can use to chart that history, like this one from the Surgeon General of the U.S.

And finally, there’s the puzzle of light:

An interview in January’s issue of The Sun magazine spotlights Andrew Weil, M.D. Those of you familiar with his work know that he embraces alternative methods of healing and is based at the University of Arizona. In the interview, he comments on the influence of light on cancer: “One detrimental influence on our sleep is our ability to light up the night, which is a significant change in our environment over the past hundred years. There’s a body of literature suggesting that exposure to light at night, even briefly, greatly increases cancer risk, especially risk of breast cancer in women. Women who are blind from birth have very low rates of breast cancer. Women who work night shifts have high rates of breast cancer.” He recommends that, if you need light during the night, use a red Christmas tree bulb, since light at the red end of the spectrum is safest.

If you’re one of those who hasn’t yet put away the Christmas lights, here’s your excuse.

 

 

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Stories from the Infusion Center

A gloomy day and week coming up.  From that long freeze and blue sky of last week, we’re now back to typical Northwest grayness and rain, which makes skiers happy because it means snow in the mountains.

Yesterday’s ice and snow had me skiing (figuratively) through the morning much like the beginner I am — frantically trying to stay upright at high speed while the ground slips out and away from me. My daughter thought she had to be at school early and so my husband dropped her off on his way to work. Turns out the weather brought a 2-hour delay at school so I had to fetch her and bring her back. My son was home with a cold, my household assistant was running late, and when it came the real time to take my daughter in, the repairman who’d come to fix the neighbor’s furnace was blocking the driveway, fearing to move forward because his van was sliding downhill on the ice, getting no traction backward to get off it. (I’m reminded of lyrics from a Jethro Tull song:  “Skating away, skating away, skating away on the thin ice of new day….”) By contrast to the events at home, the infusion center, where I arrived almost an hour late, was an oasis of tranquility.

The hummingbirds continue their regular visits, though a hummingbird in the snow appears incongruous to this Midwesterner, where all hummingbirds vacate for the freeze. I discovered that hummingbird food doesn’t freeze, but does make a nice sugary slush. Of course we’ve had to name the two new ones: Tinkerbell and Flip Flop.  This morning, I’m watching another, stranger bird — a float plane — doing low figure 8s over the bay.  Fascinating, but not nearly as gracefuI as Tinkerbell.

This week’s white count, 6.5; hemoglobin, continuing its climb, at 9.4. After the initial burning sensation in my hands last week, there seems to be little neuropathy, but my nails are more spotted and discolored so I’m trying to protect them.  Two more rounds of Taxol to go.

The Popsicle Report: So as I’m settling in to my pod, glad to be able to just sit and breathe, I notice the man opposite me. He is my compatriot — bald (perhaps by choice since he also has a mustache), fingers in pans of ice water, iPod buds tucked into his ears. And on his feet, over his own white socks, he has a second pair of white socks encasing packs of ice. He said that his first series of chemotherapy (another veteran!) bothered his toenails so this time he was trying ice on his feet too. His tall, dark-haired wife was folded into the chair beside him quietly reading. I went off to get my usual “appetizers” — green tea and a Popsicle (blueberry lemon again). Shortly thereafter, the man’s wife left the pod and returned in a moment with a Popsicle for her husband (strawberry orange).  He said when he saw mine, he thought it would be a good idea. I sure can’t argue with that.

My nurse for the day was Therese, a Swiss woman who has worked at the center for 10 years. She is just one of the many nurses at the center, and all are heartening examples of how serious illness can get incorporated into life without dragging you down. These nurses choose to work among seriously ill patients every day. Therese did admit that it sometimes is hard to watch what happens to patients (the nurses compensate with a lot of black humor during break periods), but she said it is a privilege for her to help each patient along the path, no matter which way it leads. So while they work and educate patients about drugs and side effects, they also talk about everyday things: which is better for roasting turkeys, a regular oven or an electric roaster?  They wear smocks adorned with flowers, butterflies, Disney characters and even Betty Boop.  And when a patient finishes chemo, they gather, clap and sing, much like waiters at a restaurant attending to a birthday guest (though none plays the harmonica), a modified version of the 12 days of Christmas (“two needles poking…”).

Can’t wait for my turn to hear them sing.

This week, as she was working with me in her smock covered with polar bears, Therese turned to the small woman seated in the chair next to mine and spoke to her in German.  I’d seen this woman several times before, in her colorful outfits and fuzzy pink-and-purple hat. Today she wore the hat again, with a yellow T-shirt and a leopard-print scarf wrapped around her neck.  She sat in her full makeup and large glasses, quickly crocheting a bright yellow blanket that was spread across her lap. I decided to forego listening to my iPod in lieu of a conversation with her.

Uta had come to the U.S. from Germany after marrying an American military man. Her husband, John, came and went from the pod as Uta’s infusion took place.  He was a short stocky man, clad in one of those signature black baseball caps embroidered with “U.S. Veteran” and “Vietnam” and he had adorned it with color bars, several American flag pins and one pin of the flag of Germany. Several more flag pins were attached to his vest. He was chatty, referred to himself as a “Warshegonian” in origin, and entered and departed our conversation in the same way he exited and entered the pod frequently.

Over the years in her new country, Uta taught herself English, raised 2 children, worked as a nurse’s aid, ran a restaurant, taught German, and cleaned houses (5 a day at the time she was diagnosed). She has been coming for infusions for 10 years for chronic leukemia, which was discovered by accident when she tried to donate bone marrow at the age of 50. Though her treatments have been more intense in the past, she now comes once a month to the infusion center.

Our conversation ranged across many topics: German food (how to make a good torte and a spinach sauce, and the advantage of a breadmaker to knead dough when you no longer have the strength to do so), how women have harder lives than men (John nodded vigorously at this comment) but she wouldn’t want to be a man. Men may know more but women understand more (John nodded vigorously again). We talked about how it is good to be small (she’s no bigger than I), and I told her a comment someone made to me once upon a time: Little people are like chihuahuas; we make a lot of noise because we’re afraid we’ll get stepped on. She thinks the tradition of naming sons after fathers ridiculous. John agreed that it’s a problem being named after his father. The boy feels he either has to live up to or totally deviate from his dad’s performance to carve out an identity for himself.  But that didn’t stop John from naming his own son after himself. And his grandson is now John the fourth.

Japanese do not have this custom of naming sons after fathers, though they do sometimes number their sons.  Ichiro, a common male name in Japan, is known especially here because of the star player for the Seattle Mariners. But the name Ichiro actually means son number 1.  When my son was born, my former boss, who knows the customs of Japan, teased me that we should name him after his father, with the “junior” appendage.  Well, we know how Indiana Jones took to that idea.

Uta and John brought to mind the neighbors I had when I was teaching down in Laredo, Texas, many years ago. Mario was a Mexican-American man who had served in the Special Forces in Vietnam. (He proudly showed me a map of these operations which were  emblazoned on a black T-shirt he wore one day.) His wife Inge and he had met in Germany when they were both working as spies, he for the Americans, she for the Germans. They both liked to tell me their stories, Mario about military service, Inge about her views of life. She recommended that, if I marry, I choose a man who is good looking, makes good money and has hair.  In her opinion, those features were the only things that make up for the trouble they cause. She took pity on me, a single woman living alone, grading essays late into the evenings, and cooked German food for me. (Though I am of German descent I’d never had sauerbraten before.) In trade I looked after their parrot when they went out of town.

But back to the days at hand.

I’m still poking around on the Web for answers to my questions, but spend less time there because the information becomes repetitive (and discouraging) and there’s nothing new for my situation, though there are some promising agents — PARP inhibitors and two types of growth factors — being tested. I did find an article I should have read when it was published, back in 2007, about dense tissue being a risk factor for breast cancer: http://health.usnews.com/usnews/health/articles/070204/12breast.htm.

Like the woman described in this article, I wish I’d known about the implications of dense tissue sooner. I might have pushed for different screening tests, kept a closer watch. This article appeared 2 years ago, but dense tissue still doesn’t show up on those risk factor lists we see today.

At breakfast on Sunday, my son asked the rest of us what we dreamed about the night before. No one else could remember, but I had dreamt that, on the upcoming trip to visit family for Christmas, no one wanted to be in the same room with me because of my bald head (which is not so bald anymore but resembles a newborn’s with faint, fuzzy hair of indistinguishable color). Then I recalled: we’d watched Rudolph the Red-Nosed Reindeer on TV the previous night. Perhaps I was empathizing with Rudolph, fearing no one would let me play reindeer games.

But in the spirit of Christmas (and fundraising), here’s an idea for those billiard-playing aficionados on your gift list who really do have everything. By purchasing it, you can also support research for triple-negative breast cancer: http://www.shopmcdermottcue.com/McDermott/M88B.html.  Pool cues. Now this is corporate sponsorship I can get excited about. Don’t mind the price; shipping is free!

I’ve attached a few more photos. Despite all my talk about hair and baldness (the only obvious outward sign of my current experience), I’m not one to think my hair is my identity. But I have discovered that its loss opens up an interest in playing with identity and disguise.

In this first photo, taken last summer, I tried out the military look.

Here, like Uta, I am disguised as a colorful fuzzy gumdrop.

Besides my fuzzy head, this is the hat my daughter likes to pet.

Here is the fashion hummingbirds prefer.  This is the scarf that prompted the hummingbird attack last summer.

And here, I’m a Muslim on her way to iHop.

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