Not quite on topic, but very important

Hi folks--
If you read this blog at all, if you are reading this post, please click over to this other blog, by the family of a 14-year-old girl with a mysterious, undiagnosed, and rapidly degenerative neuromuscular disease. She is running out of time to find a diagnosis and effective treatment--imagine if there were no known treatment for breast cancer, or if we didn't really even know what the problem was! The family is just looking for ANYONE, anywhere, who has experienced similar symptoms--so if you are (or know) a doctor who might have seen such a patient, or if you are (or know) such a patient, please contact them. (The father is a professor in my field at another university.)
Thanks, and this just underscores yet again how randomly cruel life can be.

Needles

One thing I thought cancer might do for me was take away my fear of needles. I always hated them, in any setting. Never worry that I might become a junkie, I always said: the first time I poised that syringe over my delicate inner elbow, I would definitely be scared straight.

I became pretty stoic during the 4 months of chemo (I did not have a port or a pic line--it was a new needle in my left hand, every time; we managed to keep the same vein going for a long time before it threw in the towel and said "find someone else!"), even though I never reached truly blasé. I always asked the lab techs to "stick me" while I wasn't looking; I whimpered a little--no, a lot--when, toward the end of chemo, Lilia had to poke around for a while to find a cooperative vein. But still. I didn't have knots in my stomach beforehand, I wasn't truly freaked out, and it all seemed pretty under control. I figured it was a new era for me, needle-wise.

But it didn't last.

This has been quite the needle week for me. I had to have some fillings repaired by the dentist, and that required numbing my right jaw. I had them give me nitrous oxide while he administered the shots. Of course, I probably could have handled it, but I was a whole lot happier floating several feet away from my body while that needle was probing around my jaw hinge.

And today, I had an MRI. Now, some of you may be thinking that organizing this post around needles is a pretty back-handed way to tell you I had an MRI, so let me be informative. In late spring, I was trying on some clothes when I realized that I had increased a bra cup size on the left (that's the non-cancer side), even though I hadn't really gained any weight. And then I started noticing some aching that didn't seem to correspond with a hormonal cycle. So I called Christy, who said "It's almost certainly nothing," but endorsed the idea of my visiting one of the surgeons out of an abundance of caution.

I saw a new surgeon (Mel has moved on from USC--though I have to admit, I might track him down if I ever need a scalpel wielded again). He did a thorough exam, said it was probably nothing, but felt some lumpiness in the same area where my gynecologist found some lumpiness in December '06. At that time, I had an MRI and ultrasound, and though for a while the medical team thought there might be something to biopsy (again, out of the "abundance of caution"), by the time they went in with a hollow needle, there was no spot looking suspicious anymore.

Well, since it was lumpy again in that area--and I should mention, I am apparently just an extra-lumpy kind of gal--he ordered a new ultrasound. Which was completely, 100% clear and normal. But (always with these abundances of caution) he also ordered an MRI. Which I had today. Which I'll find out about sometime soon. Which I'll let you know about.

And which necessitated another needle--this one in my arm, for an IV push of "contrast dye," which helps illuminate all the booby tissue for better diagnosis. Anyway, this time I was anxious about the needle just like in the old days before chemo. It was like that whole toughening-up experience never happened. Funny. I have been really happy for the "reset" on so many things (getting my hair back, getting my health back, getting my life back). Too bad I also have to get back some things I didn't really miss.

Good eats

Much silence from me lately! This reflects both good news (trip to Europe, getting work done, playing lots of volleyball) and not so good news (I'm feeling resentful about my involuntary association with the world of cancer, partly because of its effect on my own life, and partly because someone very close in my social circle--and younger than me--has just been diagnosed and is being dragged into this world herself).

I break my silence with little to say about my own life. But the NY Times strikes again with another great piece on nutrition. This is just a general "what you should eat" article, but most of these items are on my nutritional oncologist's list of things to eat every day.

Bon appetit!

Living (off topic, but not really)

I am not a traditionally religious person at all, but this story of a street preacher in Oakland just blows me away. One thing that cancer taught me was the importance of living fully and authentically, with courage, following the deepest part of your soul. I also feel that there must be some meaning, some way that we build something that will outlive us--whether through creative works, or academic articles (me), or through the impacts we can have on others. Well, this guy is like the poster child. I just find it very moving.

Then there's this piece from the NY Times, which also moved me on several levels. First, it's an echo of The Wire, my favorite TV show, which depicts the complexities and heartbreaking realities of the life of a modern city. The show and the article both focus on Baltimore, on inner-city kids who don't have much of a future to hope for and about whom most of the world doesn't really care. The article, which is about a lottery for inner-city kids to get into a new prep school, reminded me also of cancer--of that lottery of luck in which your wheel spins agonizingly and stops, the black ball dropping into that slot and a year of surgery and chemo and radiation and weakness and hair loss becoming your prize. Such random fates distinguish the blessed from the forgotten. I got cancer, and lost that particular lottery; generally, in life, I'm quite blessed, and have the kinds of fortune that others might dream about. There's nothing at all fair about any of it, and nothing understandable.

Ted Kennedy = attention to cancer

I was of course very sad to hear about Ted Kennedy's diagnosis of brain cancer. But it is prompting some useful attention to cancer issues. Given that there's been a major oncology conference happening in the past week also, there's been lots of useful cancer news. Here's my favorite one for today:

From CNN, a terrific piece on "what to do when you're diagnosed with cancer." It is a terrific road map for the steps that need to be followed in those first, crazy, terrified days.

Next, be sure to check the comments section from my last post, where a kind reader posted the web address for an article on how vitamin D helps with breast cancer treatment.

In the news

I have certainly been reticent lately. (That's reticent, not reluctant!) The blessing and the curse of being back to "normal life" is that I am mired in the quotidian tasks of work and errands. The good news is, we will be going on vacation in a couple of weeks, to Northern Italy, Slovenia, and Croatia. I am very excited. It'll be a 3-week trip, hitting lots of lovely places (Alps, Venice, seaside Istrian resorts...). And our house and dog won't be lonely, since there will be visitors throughout our time away, enjoying the beach life in our absence.

But I'm here for business, so let me get to it. The other day, NPR had a very interesting story about a new study (published in JAMA if you want to go get the actual study; full paper here, subscription required; the NPR audio is here) regarding diagnostic technologies. Apparently mammography plus ultrasound found 28% more tumors in women with dense breast tissue (like me!) than did mammography alone. That's a rather whopping increase, I think. The procedure was recommended (by the authors) primarily for women at high risk, rather than those undergoing routine screening. As someone who's already had breast cancer, some sources say that I am at high risk, so I will be talking to my doctor before my next annual mammogram!

And a second important story. Now people--does anyone out there really still not get it that we need to exercise? That we really, really need to? That all the rationalizations and justifications in the world do not prevent breast cancer, but that moving our butts even a little bit will start to help, and moving them a lot will really help? (Plus all those other benefits, like fitting into jeans.)

Anyway, now I hope that everyone with a daughter starts to make it a priority to be sure that she does not sit on her own butt, become a couch potato, shun PE (as I did!!), or otherwise grow up without learning that physical activity is a really fantastic part of life. If you can't do this for her enjoyment, then do it for her life. Another new study published this week found that adult breast cancer risk was substantially cut for women who had exercised as girls and teenagers. That's right--it's not enough to turn women loose to discover exercise once they're grown. We need to start them early, so that the next generation can have a better shot at avoiding induction into the Breast Cancer Club.

I hope all my friends, family, and kind readers will take this to heart for the young women-to-be whom they love!

More problems--and one solution!

I'm sure everyone has been following the latest bad news about Nalgene and baby bottles? The regulatory focus has been on baby products, since the chemical in question--bisphenol A--poses risks to development. But the chemical is also implicated in breast cancer (see the end of the article). I'm glad to see that Nalgene is changing its plastic, and that there are tips available to minimize BPA exposure. But as a longtime drinker from Nalgene bottles (and eater of canned foods), I also wish this information had come out earlier.

Now onto the good news. I've been complaining (even more off-blog than on) about the fact that modern corporate farming and food distribution has led to less-nutritious, less-tasty food that poses greater health risks. I've been wishing that I had the time to grow my own food, or that we had a direct line to people who farm organically and could get us fresh produce, not stuff picked a few weeks ago and left to ripen in a dark truck.

Well, it doesn't take much internet sleuthing to find that this is entirely possible. Community-supported agriculture may be a relatively new movement, but it's well organized! I've found 2 potentially good farms in my area. The costs are higher than at the grocery store, I think--and that stinks, because again, healthy food should not be something available only to rich people. But for us, the costs are pretty manageable, and I'll be looking into this more. Just think--peaches and tomatoes that really taste like peaches and tomatoes. Keep you posted!

And more...

I'm sure almost everyone has heard the story that broke last week, about pharmaceuticals in our drinking water. The linked article highlights estrogens as one component commonly polluting our water. Now, my breast cancer was hormone negative, but the vast majority are stimulated by estrogen or progesterone, or both. As women worry about avoiding soy milk, I wonder if they think about the risks in drinking water--risks that can't be avoided, apparently, by switching to bottled waters. (They can be avoided through the right home filters--which is its own challenging issue.)

And I'm feeling just a little bit guilty about flushing my own toxins (e.g., the post-bladder remains of Adriamycin) during chemo...

To fight cancer, we have to fight a lot of other things...

...like our government's refusal to protect our individual lives, in favor of protecting corporate profits.

I know a lot of readers visit this blog looking for support and perspective on dealing with breast cancer, and I don't mean to offend anyone's political sensibilities. But this is germane. I struggle to maintain my survivorship by trying to control whatever I can control: to eat healthy food (not polluted, not full of chemicals, and grown to maximize nutrient value); to exercise a lot; to give my body both motion and rest, challenge and care; and to stay balanced emotionally.

And then, as much as we try to do these things, we live in a world that could either support our efforts, or be a hostile environment against which we have to fight. And when our White House decides it will lean on the agency charged with helping us have a healthy world, urging it away from the strongest and most protective standards (for whatever reason, but especially for the benefit of corporations, which do not get cancer but do make big bucks)--when this happens, I'm really disgusted and angry.

I Love Manchego Cheese

Odd title, you say? Indeed. Actually, it's the mnemonic I've used for the last couple of days to try to remember the 4 things I wanted to blog about: Interview, L., Myths, and Checkup.

Let's take them in reverse order, because the biggest and best thing is my checkup--which I had earlier this week, which included my annual mammogram as well as the blood and physical exams, which was all clear, and which officially established my 2-year anniversary of surviving breast cancer. Yay!!! (Technically, it's not quite 2 years, but I think we can assume I won't relapse suddenly in the next 2 weeks.) I've said this before, but my brand of triple-negative cancer is at greatest risk for relapse in the first 2 years. Risk drops dramatically after that until 5 years, and then it drops precipitously after that. So there's no "home free"--I am knocking wood with my elbows as I type--but this is a Big Deal anniversary.

It's almost like I might start to dare to imagine a life in which breast cancer never comes back. It's an audacious thought, but I just might get there.

OK, second--myths. Recently--on blogs and websites--I came across some very credible-sounding information suggesting that I should get my subsequent gynecological care from an oncological gynecologist. The information suggested that women who have had breast cancer are at significantly increased risk of ovarian and uterine cancers, and that they (we) should be closely monitored. Note that I have not linked to this information. That's because I asked Christy, my oncologist, about this at my checkup, and learned that in fact the higher risk of reproductive cancers is only true for women with some of the genetic (BRCA) breast cancers*--not for me. And, at USC, the oncological gynecologists will not even see healthy women (including BC survivors)--it's not medically warranted.

It continues to amaze me how many myths are out there about breast cancer, and how much misinformation abounds. Of course, there are also legitimate differences of opinion among physicians, but it is so easy for false "wisdom" to take root.

Speaking of this--did anyone say "malpractice"? I've been repeating this horror story to several people recently and I still can't quite believe it.

A friend of a friend was recently diagnosed with breast cancer. She lives in a small town, not near a major university medical center or comparable breast center. After her surgery, she was told that her tumor would not be tested--since most tumors are hormone positive, she would just be treated as if hers were. That means she would have hormone therapy and no chemo. How appalling! First, hormone therapy is pretty nasty, according to my friends who are on it. It may not make you lose your hair, but you lose other things--from sleep to bone density. No one should be on hormone therapy if it's not absolutely necessary. Second, what if this woman is a triple negative, like me? In our case, chemo can be all the more important--a recent study (cited in a post below) showed that it can make all the difference in survival.

This woman is so relieved to be told she won't have to have chemo that she hesitates to push further and ask more questions. Fortunately, with our mutual friend's prompting, she has gone back and asked for more, and the pathology tests are finally being done, and I hope she will have appropriate treatment. When I told Christy, her eyes blazed and she said "Malpractice!" instantly. It's scary to think how many thousands of women out there could be being treated like this. All my blogosphere pals and support group friends tend to be well to do and urban; I worry for our sisters who are less economically blessed and who live in humbler, more rural places. Why should their lives count for any less?

Finally, interview. The one link I add.* This week, my local NPR affiliate, KPCC, ran a half-hour interview with Dr. Susan Love about breast cancer. It's a very interesting interview in which she talks about a test she's trying to develop for susceptibility to breast cancer (you put something like a bandaid on your nipple and produce some fluid, and a pregnancy-test kind of readout tells you if you have abnormal cells--kind of like a pap smear for breasts, to give early warning before cancer actually develops); a study that found that a small amount of chemo injected directly into the ducts can kill cancer cells (no more surgery??); and, frustratingly, "the 5 kinds of breast cancer," which she never actually named. Give it a listen if you have some time.

By the way, I do indeed love Manchego cheese. It's especially good with some kalamata olives and apples. Mmmm.

*I'm so sorry, but I am too lazy to link tonight. Am just trying to cram this post into a few short available minutes between work and sleep--please Google if you want to learn more, and sorry for falling short on my informational duties. I thought it was better to post at all (after my long absence!) than to wait and do it perfectly.

Happy 2008!

Most important to me: I was cancer-free in 2007. For the rest of my life (which I hope is very long), it will never again be trivial or easy to ignore that a year passes with good health. There is something very comforting about an entire calendar year without cancer. Yay.

I just saw an online newspaper poll asking whether readers have broken their New Years resolutions yet. It made me realize that I don't have any New Years resolutions. I have Post-Cancer resolutions, and they are basically the same ones I've had since October 6, 2006 (my last day of treatment). But because the New Year is a fine time to reaffirm them, I'll list them here, in no particular order.

• Remember to embrace relationships in my life. With Noah, with my parents, with extended family, with friends, with colleagues--life is a social experience. I will make choices that keep me connected, as much as possible.
• Treat my physical body as something important and valuable. It's the vessel that carries me through this life. I tend to live in my head, and for most of my life I ignored or even resented my body. No more. I will make food choices that nourish and energize me; I'll focus on pleasure in food through nourishment, not indulgence; I will exercise regularly. When I am tempted to stay in and work rather than playing volleyball for a few hours, I will remember that exercise cuts cancer risk, and that my healthy body can more easily sit at the computer for hours, later, to work!
  
• Work for the joy of work--for the questions I want to answer and the things I want to say. Don't get stressed by the headlong pursuit of tenure; instead, remember that I chose a career I'm passionate about, that I care enormously about the work I do, and that I am incredibly lucky and happy to have this job. When I work (even during those weeks when I'm working 12 hours a day, every day), I'll work in this spirit.
• Stay in touch with the spiritual side of life. For my own spiritual practice, this means setting aside time to sit and be quiet, and continuing to work on compassion and nonattachment.

So, at this New Year 2008, I reaffirm my commitment to live my life consciously and deliberately, and to keep my cancer resolutions active--not to let the elapsed year make them fade.

And I am so excited that 2008 will finally bring the end of the GWB reign! ;^)

Happy New Year to everyone--health and joy to all.

Sylvia Easley, 9 Nov 1943 - 19 Dec 2007

My aunt Sylvia died this morning. She told her (grown) kids to go to school, asked for a drink of water, and took her last breath. She had end-stage pancreatic cancer and multiple myeloma, and she was at home, in a hospital bed in her living room.

We lived our lives at a great distance. Sylvia lived in Texas (San Antonio, Houston, Kerrville), ran a balloon delivery business, married a few men (not at the same time), and loved fiercely. She was the strongest and most indomitable person I ever knew. The way she lived with cancer taught me how to do it: You live. Just keep living. Keep doing things you want to do. If your bones are brittle, go to a water park and ride all the slides, and then take meds and sleep all the next day. If people you love are there, spend every ounce of your energy laughing with them, and then take meds and sleep all the next day. Don't be "sick" with cancer. It's an annoyance. It thinks it's in charge, so let it think so, but quietly go about your own business and don't let it stop you.

Until it's too strong. And then, recognize that you're tired, and lie back and marvel at the fresh, clean taste of cold water, and listen to songs that have always moved you, and wake up a few times a day to smile at the faces of the loving ones who surround you. Go home, and have your dog lie on the bed with you, and open the blinds each day to watch your own neighborhood and your own yard. Sleep, while your heart keeps beating and beating, while your nails turn dark and then pink again, while your breathing gets ragged and then smooth again.

And then, one morning, speak softly to your children, and just...Stop.

Does this mean I can't keep staying up until 3am?

From today's CNN, an article on a research study that says working nights is a big risk factor for breast (and prostate) cancer. Yikes. My typical schedule is to work at my computer until 1am (on an early night) to 4am (on a late night), and then get up around 11. In the winter, I am definitely restricting my exposure to sunlight--on weekends I might sleep in until noon or later.

The article seems quite specific to nighttime work, but the principles identified should apply to me, even if I'm not in a workplace per se. I'll be checking out the original study and will let y'all know!

The hair IS growing

I may complain about how slowly it comes in, but recently it has started to seem really obvious that my hair is actually growing. Yay!

(For fun, you can click the "photo" tag under labels, at right, and you'll be able to compare this one to the one just 2 little months ago.)

Plus ça change...

Something about the change in seasons has me really thinking about how this year feels different from last.

I have hair, for one thing. This past weekend, many of my friends and colleagues were at the Wharton Junior Faculty conference, for Organizational Behavior professors. Last year, I spoke at that conference, wearing a wig because my glorified stubble was still just a little not-ready-for-prime-time. I really thought I'd have hair down to my shoulders by now--I know my hair's always been quite shy and retiring, but I thought it could at least grow... In any case, it took a long time, but I've graduated from baby clips and air-drying to toddler clips and blow-drying, and sometimes it actually gets in my eyes...amazing.

Then there's energy. These days, I can pretty easily go out for 5+ hours of beach volleyball, if the sunlight is cooperating. I've never been a runner, but today I ran with Kibble for about a mile in addition to our mile-plus walk, and felt great.

During chemo, energy was a weird, weird thing. Ordinarily, I think of energy as depleting somewhat the way a bathtub drains--slowly, steadily. But during chemo, it was as if the bottom of the bathtub suddenly vanished, and all that water just gushed down at once. One minute, fine. The next minute--empty. A while after all my treatment ended, we went out for a walk and, about 5 minutes into it, I had to sit on someone's wall until I could summon the strength just to get back home. That was the last time the "emptying" happened, but still for a long time I got tired quickly, had fewer resources, just couldn't push through at those times when I needed to.

As mentioned in a recent post, surgery gave me a numb armpit and arm; taxol gave me burning feet. Adriamycin gave me awful nausea, and chemo in general gave me heartburn, which lasted until the first day of my diet, whereupon it magically disappeared. I had fuzzy thinking and lost words, lost periods, altered sense of smell and taste. I even had a hot flash or two.

Today, every single bit of that is gone. My hormonal system is still reeling, I think, but the rest of me is pretty much back. Thanks to diet and exercise, I'm in better shape than before.

Obviously, no one can be sure that cancer won't come back. But for now, I really want to report to anyone still going through treatment (or just finished) that you do get your life back. Going through the whole breast cancer Experience really sucks and is scary. But from this point of view, looking back, that one sucky year has not taken over my life. I hope it helps someone out there to know that. Just hang in there!!