At least it's a "good" cancer

Please respond to cancer coping survey!!

2012-02-01T20:46:00.000-08:00

If you currently have breast cancer, or if you had it in the past, a student at USC would love to have you respond to an online survey regarding your experiences and coping style. This student is a senior conducting an honors thesis, and in the future she hopes to become a medical oncologist. Though she has already done research in a pathology lab on HER-2 treatments, this project is for her sociology major (she also double-majors in biology).

Please help this student and science. Her study is at https://usccollege.qualtrics.com/SE/?SID=SV_72i5E5bhK3Fgdx2

Thanks!

I'm done with Komen

2012-02-01T13:38:00.000-08:00

No more Komen walks, Komen donations, or Komen-related advocacy for me.

You may love or hate Planned Parenthood, but we can all agree that breast cancer screening and services are good, right? That's the PP program whose Komen funding was halted.

Ideology doesn't help women with breast cancer. Science, research, screening, treatment, and funding help women with breast cancer. And there are lots of other advocacy groups that I can support instead.

http://www.salon.com/2012/02/01/komen_for_the_cure_sells_out_women_again/

http://www.nytimes.com/2012/02/01/us/cancer-group-halts-financing-to-planned-parenthood.html?hpw

Blaming Big Medicine

2011-02-22T19:40:00.000-08:00

Cancer is a frustrating, awful experience. In a world in which we all strive to be safe (airbags? antilock brakes? deadbolt locks?) and in control (calendars, schedules, savings accounts), cancer shows up and strips us bare. There will be no certainty, it says. You will not be in charge of this process. The course of the disease cannot be predicted--it's impossible even to say that one person's response to Taxol will be the same as another's. My aunt was diagnosed with multiple myeloma and given less than two years to live; thirteen years later, she died having outlasted every treatment the medical team could devise.

So perhaps it's no wonder that so many people seem to channel their fears and frustrations into fury--at the doctors, the drug companies, and the researchers who are trying frantically to come up with new and better weapons in the fight against cancer. A couple of weeks ago, I noted with interest the New York Times story about lymph node treatment. In short, researchers have found that about 20% of women with breast cancer--in particular, those at stage T1 or T2, with evidence of metastasis to the nodes but not palpable enlargements, and whose treatment includes lumpectomy with radiation and possibly chemotherapy--do not need to have further surgery to remove lymph nodes. This lymph node surgery is invasive and risky--my anecdotal impression is that many women who have undergone the extensive surgery end up with complications such as lymphedema. I was lucky that my cancer had not spread to my lymph nodes, but if it had, it would be a huge relief to know that my survival and risk of recurrence would not depend on having my armpit scraped clean.

So, an informative article about an interesting new development. But the comments to the article really drew my eye. I found them--let's say, less than rational. I'd like to highlight some of them here, with my responses.

hey geniuses, what about the other 80%? and what does that tell you? you can make statistics say whatever the hell you want them to.

Well, the other 80% don't get the luxury of skipping lymph node surgery. But that does not make the findings suspect, nor does it indicate "lying with statistics." Breast cancer research is moving in the direction of more individualized treatment--approaches customized to the individual person and her disease profile. So, it's not a failure to find a treatment applicable to 20%. It's progress for 1/5 of all patients. And we have to keep working for the rest.

I wish to hell medicine would make up its freakin' mind about all this. My theory is no one knows anything about anything! It's all guess work.

Not necessarily. Science moves forward, but in small steps. Plus, studies can conflict. Scientists look at all of the existing knowledge, and weigh study results against the real risks and opportunities for patients, and all of this informs their recommendations. Changing recommendations reflects progress, not guesswork.

And, finally--

the other 80% end up like my mother in law: dead within five years of a metastatic diagnosis because nodes were not removed and tested when the inital [sic] tumor removal occured.

First of all, this is very sad and my heart goes out to the commenter and her mother-in-law. At the same time, the comment implies (well, states flat out) that the death occurred because nodes were not removed or tested. Cancer is a complex, nasty, and often unpredictable disease. Many women whose nodes are removed, tested, or treated still die, tragically. A cancer death cannot be reduced to this one variable. It's tempting to look back at what wasn't done, what might have been--but even hindsight can't tell us how to save someone.

In short: faced with the dangers and uncertainties of cancer, it's natural to look around for someone to blame, and for a tangible target for our anger. But lashing out at the research studies and scientists on whom we rely for better treatments and longer lives--that seems misguided. Let's all be mad as hell at cancer. But let's support cancer research, be intelligent consumers of research, and figure out how to make the research help us live longer.

What's really important at Christmastime

2010-12-14T10:54:00.001-08:00

This is so beautifully said. It's a short piece by a Salon writer whose mother has terminal lung cancer, talking about the nature of love (versus commerce) and how Christmas brings out the sweet and the sorrowful. Brought tears to my eyes, and a profound recognition of truth.

Choosing to end treatment

2010-12-09T12:29:00.000-08:00

I could not agree more with this story at CNN. I've been sad to hear about Elizabeth Edwards' death, but I am happy that she met it on her own terms.

Fruits & veggies: No good?

2010-12-04T22:29:00.000-08:00

This new study was highlighted in yesterday's LA Times. Apparently a review of extant research (NOT a meta-analysis--an important distinction) has found little to no effect of the kind of high-vegetable-content, low-meat-content diet that I and many other cancer survivors try to follow. In particular, the article says that the low-fat, high-fiber, high-veggie diet may not do much good.

Although I find this disappointing and a little discouraging, it probably won't dissuade me from seeing the low-fat, high-fiber, high-veggie diet as ideal for preventing recurrence. a) It tends to keep weight lower, and weight is a demonstrated risk factor; b) It tends to emphasize foods closer to nature and thus less processed and with fewer chemical additives. Though we don't yet know the role of such chemicals in cancer risk, it seems like avoiding them may lessen the chance of some kind of harmful exposure; c) Even without supporting data, the logic behind the diet makes sense to me, and the corollary benefits to cardiovascular function and organ health make me feel like it could increase overall health and thus leave me less vulnerable to cancer risk. Ultimately, it seems unlikely to cause HARM, so why not keep it up? (Of course, I write this after having guacamole, tamales, and refried beans for dinner--so maybe it's not "keep it up" so much as "start it up again"...!)

Awareness is great; how about some progress?

2010-10-25T12:15:00.000-07:00

The LA Times today has a nice piece addressing women's fear of developing breast cancer, the advances in treatment that have occurred over the past 30 years, and the distance we still have to go.

Body of Knowledge Full-Frontal Assault - LA Times Magazine

What to do when diagnosed

2010-08-06T21:29:00.000-07:00

No time for me to comment, but I just re-found a very useful CNN article on what to do when you're diagnosed with cancer. Brief and to the point.

The new dangers of fructose

2010-08-04T21:12:00.000-07:00

Yesterday, I read an article on Reuters about a study showing that some cancers (particularly pancreatic) "feed" on fructose, growing faster when given more of it. Because eating less sugar is recommended for cancer (and cancer recurrence) prevention, this was not too surprising. However, the article distinguished between fructose--problematic--and glucose--less so. Of course, high-fructose corn syrup was mentioned: because it so permeates industrial food production, could it be accelerating cancers?

Today, salon.com has a terrific piece examining the issue. My favorite part: the Marion Nestle quote comparing sugar content in various sweeteners:

[Both corn syrup and] table sugar ... are about 50% fructose and are about equal in their effects. So is honey. Agave has even more.

Again, it's all about perspective. Let's eat less sugar--we'll be healthier. But I'm seeing several media outlets jumping on the "corn syrup is evil" bandwagon, and really--not helpful, guys.

_________ gave me cancer

2010-07-30T23:05:00.000-07:00

I've heard plenty of theories--many quite nutty--about what causes breast cancer. Obviously, we don't really know. For some reason, the incidence is much higher among women in my demographic--upper middle class, no pregnancies, history of birth control use, and whatever other lurking dangers are created by a privileged, professional lifestyle. I may not have lived in Marin County, but I seem like a model Marin case.

I've also heard many other possible causes (see a list here), including:

underwire bras
antiperspirants
heating food in plastic containers
plastic containers in general (BPAs)
drinking too much alcohol
not drinking enough alcohol
working the night shift
and now--sleeping on a mattress.

That's right; sleeping on a mattress. Sigh.

I actually try not to heat food in plastic containers anymore, or to use BPA-carrying plastics. I avoid parabens (though I just discovered that they're in my new Philosophy moisturizer, so once that runs out, no more Philosophy). I try to drink no more than three drinks a week. I work on getting enough cinnamon, turmeric, green tea, vitamin D, and omega 3s. I even just completed an 11-day "cleanse" to try to detoxify my system (Isagenix, if you want to know).

Really, we don't know where the f&#% this disease comes from, but we clearly live in a world swimming in toxins and contaminants, and I'm all for trying to find new ways to improve prevention and resistance. But COME ON, PEOPLE. Enough with the snake oil!

Or am I just one of the lucky ones, because my cancer was on the right?

New research on chemicals and breast cancer

2010-07-23T11:54:00.000-07:00

It was sure a sexy headline: "Cleaning products linked to breast cancer." Imagine all the late-night jokes about that one ("Honey, I won't be cleaning anymore!")--well, maybe if late-night comics were women.

When I read the article, I was dumbfounded. The research sounded like a joke. It's a self-report survey in which women say how much chemical exposure they've had, and that is compared between women with and without a history of breast cancer. It sounded extremely weak.

But with the Shirley Sherrod debacle fresh in mind, I decided not to stop there. I clicked the link ("suggests") to get to the Science Daily description of the study, somewhat more in depth. It said that the study comes from an open-access journal called Environmental Health. Well, that's not great because it suggests that the study wasn't strong enough to be published in a regular, peer-reviewed, restricted access journal.

But OK. I then went to the study itself. Here it is. And it's not really too bad, as preliminary evidence goes. I won't be throwing out all the cleaning products in the house, but this is enough of a signal that other researchers should now do some deeper digging.

What I really want to say, though, is this: It is so important to evaluate the quality of the science behind any of these findings. There is breast cancer news every single day: eat this, don't eat that, Avastin doesn't work, don't clean your house. (OK, that last is a stretch.) Some of these findings are coming out of really important and rigorous research. Some are absolutely bogus and should not be listened to. And then there's the substantial middle, in which this study resides, where there are suggestive findings but so much potential for fear-mongering or knee-jerk reactions. Take a deep breath and read the study. Check it out. Don't take the news article's word for it.

Insomnia

2010-07-22T12:10:00.000-07:00

The Huffington Post--whose living section I often find suspect, filled as it is with pretty quack-y medical articles (let me just say, I think Suzanne Somers' approach to cancer prevention is a giant duck)--has a GOOD article today on cancer and insomnia.

When I was going through chemo, my acupuncturist would ask me, at every appointment, how I was sleeping. Disrupted sleep is a common correlate of chemo, at least in part due to hormonal disruptions mimicking menopause (or, inducing menopause in many cases).

Further, I've found that my sleep post-cancer-treatment is much less reliable than it was before. I have times when it's hard to fall asleep or hard to stay asleep. The study described in the article seems like a valuable step in helping deal with this problem.

Telling someone they have the big C

2010-07-06T19:34:00.000-07:00

Today's LA Times has an interesting blog post giving results of a survey on how people were told that they had cancer. The phone-message-on-Valentines-Day example seems, um, not great.

My own experience was probably on the "most positive" end of the continuum. I went in for a formal follow-up appointment and got the news from the surgeon, who spent roughly an hour with me (and Noah), drawing pictures and discussing the treatment and answering all the questions that could surface from the depths of our confused, overwhelmed brains. He (the surgeon) also emphasized the word "cure" repeatedly, and his tone was so confident and positive that I never felt--at that time--like "I might die," just like (as I told Noah) "my life [was] going to SUCK for the next year."

The only bad part of the news-delivery process, for me, was that the surgeon and the rest of the oncology staff were angry with my primary-care physician for not taking responsibility for that process himself. And they let their anger be known, just a bit. So I knew that there was some buck-passing, and maybe I could have done without that. Overall, though, I'd give Norris Cancer Center an A in this area.

How doctors deliver the news: It's cancer

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

2010-06-29T21:33:00.000-07:00

What a touching story. For me, it's not so much that this guy is trying to keep his wife's memory alive, but rather the fact that her life (and death) inspired him to do so much with his own. He may be living in tribute to her, but he is emphatically living--what a wonderful gift she left him! The list seems pretty fun and interesting, too. I wonder what PhD he'll get.

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What would I do?

2010-04-04T17:04:00.001-07:00

Another great cancer-oriented article from the NY Times today. This one tells the story of a woman who was diagnosed with breast cancer at 31, was successfully treated, completed her medical degree and entered the field of palliative care, and then had a recurrence and severe metastasis of her cancer. She found herself resisting the same palliative approach she'd been advocating, and fought hard--there's no other phrase for it--until it killed her at 41. Ten years, end to end. She was not ready to give up and not ready to die--at 41, who would be? At 50 or 60, who is, really? In any case, it's yet another poignant and thoughtful piece from the Times, which seems to have a whole "cancer beat" alongside politics and world affairs.

Things are good with me. I passed the 4-year mark with clear bloodwork, mammogram, and physical exam. I have fully regained my strength and my life, and to a large extent I have recovered a sense of confidence that my life will continue for the foreseeable future--or, at least, not be cut short by cancer. Who knows, but the gnawing fear subsides a bit, and it becomes easier to live both for today and toward a future, and that's a nice thing. Of course, as the article illustrates, neither the future nor one's attitude toward it is very predictable.

"It feels sometimes like the entire world has cancer"

2009-10-25T13:37:00.000-07:00

The NY Times today has a terrific profile of M.D. Anderson, the cancer hospital in Houston, TX. This is where my aunt Sylvia was treated for years--they helped her to become one of the longest-surviving multiple myeloma patients they'd seen--until she was too sick to make the drive from San Antonio on a regular basis. This article is also incredibly sad, and it's a bit scary for me to read about the nurse who beat breast cancer only to see it recur as metastatic disease 9 years later. Next year will be 4 years for me, and I take none of them for granted.

Quick link

2009-08-07T15:52:00.000-07:00

It's been forever since I've posted, I know. I have a long, long post weaving itself in my head, and sometime soon I'll actually write it down and post it. I'm still here, still doing well, no recurrence (knock wood! next checkup soon) and getting on with my post-cancer life.

But I just had to post this today. I saw a reference to it in the letters section of the NY Times. Many news media this week covered a story about cancer patients' not participating in research studies, and how that contributes to a slow pace in treatment discoveries and advances. There's been some good discussion of why this happens, but one letter-writer pointed out that a major impediment to participating in clinical trials is that they may be geographically distant from the patient, and it can be expensive and risky to travel to them.

Well, I had never before today realized that there's a group that arranges free flights on corporate jets for patients undergoing cancer treatment. It's called Corporate Angel Network, and its website is here. Of all the great "free" things I've heard of for cancer patients, this one makes me the happiest. I hope the cancer-blogging network can get the word around comprehensively, so that travel distance doesn't have to slow down advances in cancer treatment!

A sad, sad story

2009-03-17T12:28:00.001-07:00

I've linked before to columns by Dr. Amy Tuteur, who blogs at salon.com. Today, salon has front-paged an excellent piece of hers, in which she describes a devastating experience from her medical internship, when she did not speak up against an oncologist who recommended chemo to a clearly-terminal patient.

I'm sure that many of us who have, or have had, cancer can relate to the oncologist's desire to pursue any chance of recovery, no matter how remote. But many of us who have had chemo can also relate to the patient's conviction that the end of life should not be a time of over-medicalization, but rather of sitting on a beach somewhere and saying goodbye peacefully (even if, still, painfully) to a lovely world.

The article is food for thought. It is very easy to be swayed by the signals we get from our doctors. One doctor who offers a strong opinion can change the entire rest of our lives--and they are not always right. To me, the moral of the story is: independent second opinions!!

Three years, all clear!

2009-02-20T13:53:00.000-08:00

Three years ago today, I'm pretty sure I was skiing at Copper Mountain in Colorado. Three years minus 7 days ago today, I was standing in the shower saying "Oh, shit" as I felt a subcutaneous golf ball on my right breast.

Today, I drove 26 miles north to Norris Cancer Center. I had my blood drawn by my favorite "stick," Dean (he said my arm-crook veins are hardened by the chemo, and he took the blood from a vein that crosses the back of my thumb--but he got it painlessly, and on the first try). I waited for a long time in the mammogram waiting area, with about a dozen other women, some with the short crew-cutty hair that marked them as recently completing treatment; some looking frightened, with husbands' hands clutched in theirs; others playing it cool, telling anyone who starts the briefest conversation that they're "just there for my yearly!" I wore my new t-shirt: "I already kicked Cancer's ass. Wanna be next?"; only one nurse commented on it (positively), but it garnered a lot of furtive looks. I wondered if the "ass" was shocking people, or if I looked too young and healthy to be a cancer survivor (I like that one!), or if maybe they secretly liked it.

Anyway, I was called late for my mammogram, by a cute little radiographer who did a fine job of mushing, smashing, and subjecting me to excruciating pain. I also think mammograms must have been invented, by the way, by someone with no concern for breast perkiness. Those underside ligaments must age about 6 years with each image.

All was going fine; she went off to consult the radiologist and I relaxed with my iPhone to wait to go see the doctor. But then she came back and said that the radiologist wanted "a few more views," to look at something she wasn't happy about. I barely blinked; we've been keeping a close eye on the left side (the one not previously involved) because it's fibrous and sometimes achy.

But they didn't want to look at the left. They wanted to look at the right.

And for the next 5 minutes or so, I experienced real terror. I've already had surgery and radiation on the right. If there were a new tumor there, the whole thing would have to go. And I've sat through enough support group meetings to know there are worst things than losing a breast, and there is life after a mastectomy, and reconstructed boobies actually look pretty real and cute--but still. While she mashed me into new, contorted positions, and used a compression plate whose effect was like having a stiletto heel pierce a nipple, I just kept thinking, "I don't want to lose it after all of this." It's funny; I didn't even think about chemo or radiation or months of illness. I've thought about that before, but even my nightmares of getting cancer again--somehow they just never involve it happening on the same side.

It was super scary, but when the tech went back to consult again, she returned saying that it was all clear, that the extra mashing had given a better view and I was fine. I couldn't quite relax and believe it until I saw Christy, my oncologist, but her exam and the bloodwork and the images were all telling one happy story, she said, and finally I did believe.

Still, not until I was driving away did I get the moment of full realization that I've now reached the third year of survivorship. With my cancer profile, this is really huge. Two years was huge, but three years is huger. My risk curve drops off precipitously at two and then three years. Not like I'm ever "home free," but at this point I can really relax much more about the prospect of recurrence.

In the car, I felt the grin spread across my face like someone was stretching it with their fingers--and it stayed there until the third time a slow driver cut me off in the left lane. Then I was back to reality, which is what life is, after all, and I must say I'm pretty glad to be here.

Cool study!

2009-02-10T19:09:00.000-08:00

An enzyme that blocks breast cancer? -- see here

Birthdays

2009-02-09T10:59:00.001-08:00

I caught myself in some insanity this week.

Friday was my 42nd birthday. Around Friday, you could have found me gazing into a mirror, looking at the lines and wrinkles around my eyes and mouth that weren't there before chemo. You could, if you could see into my mind, have watched swirling thoughts of sadness and loss about getting older, losing skin elasticity...and resentment toward cancer, for how its treatment has hastened and deepened my "inevitable decline."

I'm not sure how this craziness took hold of me, but when I went out to the beach yesterday, on a tenuously lovely day sandwiched between days of rain, and ran and hit a ball and enjoyed playful banter with friends, the world righted. I remembered that I don't mind aging at all. I am thrilled to be aging, thrilled to be getting older. I'm especially thrilled to age, for as long as I can, in a strong and healthy body.

It sure beats the alternatives.

It's not too late

2009-02-05T10:33:00.000-08:00

It's not cancer-related, per se, but I just read an incredibly moving article about a man who, during the civil rights era, beat a young black activist bloody. The activist survived, and grew up to be Congressman John Lewis; his assailant lived for years without realizing who his victim had been, but plagued by guilt over his own actions. When he did come to understand the link between his behavior and this member of Congress, he contacted Lewis to try to offer an apology. The two men met, Wilson (the attacker) apologized, and Lewis forgave him.

I find this moving for so many reasons. First and foremost, it's never too late. These guys waited over 45 years--waited to make amends, or to accept them. Wilson is the first person involved in that attack to come forward to Lewis. They are both humbled and profoundly changed by their new bond of understanding, which grew out of shared violence. People can address their regrets, even if it takes too long; other people can forgive, and experience the wholeness that comes through forgiveness. And from a Buddhist perspective, it is wonderful to have the additional compassion and healing in the world, that didn't exist before these two men met, and that now extend benefits to all of us.

2009-02-04T09:48:00.000-08:00

The LA Times today mentions a study by USC researchers that found green tea to block the effects of a specific kind of chemo agent used on multiple myeloma and a couple of other cancers--not breast cancer, though. Green tea is an antioxidant (perhaps it would be more precise to say it contains antioxidants) that are effective at preventing breast cancer, and it may even aid in the treatment of breast cancer. Although some very conservative oncologists, such as the local practice near where I live, don't want their patients using green tea or other antioxidants during chemo, I found a substantial amount of research showing that green tea actually aided the effects of chemo. It may help chemotherapy target cancer cells better, while protecting non-cancer cells and thus easing the damaging effects on the body. (Note that I am linking to a layperson-friendly page, not to one of the studies, but a quick Google search will get you the real research.)

I'm very happy to say that I was treated at USC, which--this study notwithstanding--seems more open to green tea; I wasn't treated at the local practice.

Just wanted to share!

And now for something a little bit different

2009-01-22T22:00:00.000-08:00

I've been quiet again! Nothing bad. In fact, I've been writing plenty, only it's all been book chapters and reviews of journal articles and other scintillating fare. Work is back in full swing and if I'm not cleaning up the remains of my fall course, I'm writing or doing tedious administrative stuff, or if it's a great day, playing some volleyball. But I keep meaning to write this post, and last week's season premiere of Big Love (on HBO) finally gave me the kick in the pants I need.

I want to talk about arts and literature. Surely we've all noticed by now that cancer is a popular plot device in books, movies, TV... Sometimes it's infuriating, sometimes it's downright terrifying. There are quite a few artistic works that have been important to me during my treatment and post-cancer life, and I wanted to share them.

I'll start with the things I don't recommend so highly. You may remember that Nancy on thirtysomething got breast cancer (she got better), as did a character--Dana, maybe??--on The L Word (she died). And Samantha of Sex in the City, of course. In fact, Samantha's oncologist's name was taken from a real oncologist here in LA, the one from whom I got my second opinion. Anyway, these portrayals were fine, but they all made me cynical and annoyed just the way that Pink October does. I couldn't decide whether Dr. Susan Love's appearance on The L Word was a nice bit of public service and education, or a cringe-inducing turn by a non-actor. In either case, the Art was definitely taking a back seat to Being Important Through Breast Cancer.

While all these portrayals were just pedestrian, there is one movie that I would absolutely, positively tell anyone with cancer to fling far from them. Torch it, burn it, or if necessary run in the opposite direction. It's the movie (or play) Wit, starring Emma Thompson. Sure, an acting tour de force, but perhaps the most dire, depressing, hell-on-earth depiction of cancer (ovarian) and chemo (brutal) that I've ever seen. And nothing good ever happens, except she gets a popsicle. Seriously! This is NOT a movie for a cancer patient.

OK, now on to better things. These are still not happy, necessarily. But they are works that gave me hope and comfort and a sense of larger importance in life--even if they sometimes left me sobbing, too.

One of the books I read during my winter break was Jhumpa Lahiri's Unaccustomed Earth. I've loved this author for a while now, and didn't even realize until I started the book that it was also on many year-end top-10 lists--but I can affirm that it deserves to be there. The latter half of the book consists of three connected short stories, collectively titled Hema and Kaushik, about two people whose lives touch briefly at a couple of points in time. I might not recommend these stories to someone currently being treated for breast cancer, or to anyone out of treatment but plagued by fears of recurrence: Without spoiling any surprises, there is a plot point involving breast cancer that isn't a happy tale. But the writing is beautiful and the stories are deeply engaging. (And by the way, ALL of her books are fantastic.)

I've mentioned, before, the TV show Battlestar Galactica (the current version, not the cheesy 70s incarnation). It's not geekdom sci-fi; it's intelligent, challenging drama. In the very first episode (a 3-hr movie, really), one of the main characters, Laura Roslin, is diagnosed with breast cancer. She's the secretary of education in her world's government, and she has to attend a ceremonial event just hours after the devastating news that her cancer is inoperable and incurable. While she is at the event (which takes place in orbit around her planet--there IS a sci-fi element), the planet is nuked to oblivion and everyone in orbit must flee the hostile attackers. When her aide finds her crying in the lavatory, she tells him about her diagnosis and says something like this: "The human race may be completely destroyed, and all I can think about is, I have cancer and I'm gonna die." Mary McDonnell, the actress, just nails it. In any case, it's not only Roslin's cancer, but the whole theme of dealing with terror and loss and existential crisis that has made this show a touchstone for me throughout cancer and survivorship.

I want to mention two shows that aren't about cancer, per se, but were also enormously important to me during treatment and shortly thereafter. The HBO miniseries Angels in America, based on the Tony Kushner play, is one of the most beautiful works of art--it's a visual poem, or symphony, not just a drama--I've ever experienced. It's full of darkness and dread, but then hope and life and determination. "But still. Bless me anyway. I want more life." These 6 hours say more profound things about living and loving than I've seen anywhere else.

The last one--HBO again; I wonder if they'll ever get back to this level of excellence?--is the show Six Feet Under. It's off the air now, but the DVD boxed set is excellent. The show deals with a family in Los Angeles (holla!) who runs a funeral home. Each week features the "DGDJ," as the folks at Television Without Pity used to say ("dead guy du jour"). The episode opens with someone's death. They run the gamut, from someone slipping in the shower; to a dogsitter racing down a hill on rollerblades, pulled by the two dogs she was sitting, and running smack into a car; to a "Jesus freak" listening to a religious broadcast, seeing a bunch of blow-up porn dolls escaping into the air from the back of a truck, thinking they were angels here to announce the Rapture, and then running out into the middle of traffic to be taken up by them. And, of course, cancer: the woman who looked pregnant with the tumor that had grown for months, that was now untreatable and killed her in a few days.

It might seem macabre or depressing to watch deaths occur every week, but I found Six Feet Under hugely reassuring. It reminded me of just how many ways there are to die, of how delicate and fragile our lives are, how vulnerable to the slightest vibrations in fate and positioning. And that reminded me of the futility of sitting and worrying about whether cancer would kill me, since there are a billion other things that could do it, too, and meanwhile I have a life to live and I need to embrace it. Just as the characters on this show did, with all their messy and dysfunctional fumblings.

Oh, and I should explain my reference to Big Love! One of the characters may be having a recurrence of ovarian cancer--which nearly killed her 7 years ago. :-( That's sad and spooky, but it was interesting to watch her immediate response, which was to sit down and tell the cancer that she was not going to let it win, and then to seize control of her own life, determined not to be a passive victim of fate or other people's whims. You go, girl!

I know this isn't a very comment-oriented blog, but I would really like to invite readers to share the stories, books, music, artwork, movies, TV shows, etc., that are meaningful to your own sense of life or to your cancer journey. I'd love to learn about more things to check out!

More time

2008-12-29T14:51:00.000-08:00

There's a guy who used to play volleyball with my beach group--he was very good, better than pretty much anyone else who plays with us. (I am decidedly average, myself.) Unlike many people who give unwanted or unhelpful advice, he was good at pinpointing how someone could play better. One of his favorite comments was, "You have more time than you think you have."

He said it when a hard serve came over the net and someone (like me) spazzed toward it awkwardly, flailing and then shanking the ball far out of bounds. He said it when a low set sailed toward a post and someone (like me) jabbed at it, panicking, and hit the ball right into the net. He was always right, and it's one of the most helpful pieces of advice I've gotten. The better players have a lovely economy of motion, like Neo in The Matrix--realizing they have enough time to do what they need to do and do it calmly, which makes everything go better.

So why this volleyball reverie on a cancer blog? Because I'm going to assert that it's true for cancer, too: You have more time than you think you have. True as a philosophical statement, true on many levels. You have more time to make decisions in the very beginning--it's not necessary to rush into surgery in 3 days and rush into treatment after that. It's OK to take the time to make the decisions well. You may have more time in life than your diagnosis suggests, who knows; my aunt Sylvia lived for 11 years past her prognosis of 2. My grandma, who died of lung cancer, outlived her prognosis by a couple of years.

Perhaps most important, though, you have more time than you think you do right now. Cancer is easy to obsess over, but think of all the time it claims that way--time it takes away from living life.

It's a good mantra in general, I think. You have more time than you think you do.

"Chaos" within a breast cancer cell

2008-12-25T14:16:00.001-08:00

The New York Times publishes a short piece today about how cancer cells have their DNA rearranged in odd ways, and the graph below illustrates scientists' identification of that rearrangement in a breast cancer cell. I just think it looks cool.

Christmas

2008-12-25T00:53:00.000-08:00

Tonight, we watched It's a Wonderful Life, from beginning to end. I haven't watched it that way for a long time. You see all the awkward editing cuts, you spot the few ludicrous moments (she swoons!), you really notice details like "Ernie and Bert," and where the end-credit logo for thirtysomething came from.

And yet that Capra optimism, that sweet message, can't be dimmed by its sincerity and lack of ironic distance. It is a wonderful life, just having it; having the cold winter rain outside and the warm blankets inside; having the family members who make you want to pull your hair out, because they are family members whom you love dearly and want the best for; having trivial frustrations that feel large, like a bump on your tongue, and then walking with your dog by the marina at sunset and watching pink-gold light flood the masts.

During chemo, I would gaze at my own hand sometimes, waving my fingers and thinking about the complex miracle of chemistry and consciousness that made the bones move and the tendons stretch. Of course, I was thinking about how that stops, someday. And that's part of what makes life wonderful, too: that it hasn't stopped yet.

I'm not a religious person, though I was raised celebrating Christmas, and each year the holiday does become a bit removed, for me, from its religious intentions. But this year, when our whole country has decided to unmoor it from commerce, when my household is giving gifts of water buffaloes and debt reduction, when we're quiet and contemplative and watching It's a Wonderful Life on Christmas Eve, the meaning creeps back in.

So let me wish everyone out there--those who know me, those who don't, those who are dealing with active cancer right now, those who are fervently hoping or praying it doesn't come back, those who have lost loved ones, those who are holding on to them--a deeply enriching and peaceful Christmas. I hope you have a day in which you can be fully alive, and rejoice in it.

What I Eat

2008-12-21T23:30:00.000-08:00

I've promised many times to post my post-cancer diet. "Diet" is right and wrong; eating this way helped me lose almost 40 pounds (so far), but it's not about dieting the way our society tends to think of it, and it's not about being thin for vanity's sake. It's about a lifelong way of approaching food and nutrition so that these things are part of making me healthy (being thinner so that I don't have fat as a risk factor; exercising for even more risk reduction). It's about a changed relationship to food.

First and foremost, the idea is to eat as close to nature as possible. We hear all the time about the crazy toxins and contaminants in food. Even if you eat stuff right out of the garden, of course, who knows what jet fuels and refinery emissions have settled on your zucchini. So (as I ponder just below) no, there is no absolute control. However, we can do a whole lot by cutting down on overly processed foods, with their extra chemicals; and we can shift things so that most of the calories come from real nutrition, rather than from fillers or corn syrup.

The second major principle (really a cluster of principles) is about evidence-based practices--that is, using food in ways that solid research has shown to reduce cancer risk, specifically. Low fat (10-20% of calories only), high fiber (30-35g per day), lots of antioxidants (green tea, cinnamon, turmeric, cruciferous vegetables)--all of these have a central role.

It's funny, because at first it was enormously difficult for me to eat this way. Then it became a way of life. Then I kind of backslid, while teaching, out of laziness and a reversion to the "comfort foods" of old habit. Since my class ended, I've been pretty strict again (I tell Noah I'm "hitting the reset button") and it has been ridiculously easy. So it can be tough to start this kind of habit, but it's really not tough to maintain. (My comrade-in-cancer, though, who just finished chemo, utterly refused the nutritional oncology approach. As a trained chef, she has too much value for butter. I can certainly understand priorities. Who knows how long we have, and perhaps for some people a butter-less life is not as worth living!)

In any case, at long last, here's the basic outline. I'm skipping a lot of detail because the specifics of the diet are copyrighted by Rachel Beller, my nutritionist, but this will still tell you a lot.

Breakfast:
3/4 c bran cereal (Nature's Path Smart Bran is my favorite; Fiber One has the most fiber)
3/4 c almond milk
OR
1 c greek yogurt (fat free) w/1/2 t cinnamon
1 mini bran muffin

Snack:
something like fruit (1/2 banana, some blueberries, etc.)

Lunch:
vegetables (e.g., salad) and lean protein (e.g., fish)
For example: large (3-4c lettuce + other veggies) salad with salmon, using plain balsamic vinegar as a dressing; or perhaps using a locally-made dressing called Galeo's miso caesar, which tastes amazing and is super low-fat. (Commercial nonfat dressings are a no-no because of chemicals.)

Snack:
tomato soup (no cream) or gazpacho, raw veggies, etc.

Dinner:
vegetables, lean protein, salad, soup
For example: 2-3 lbs grilled veggies (asparagus, broccoli, chard), grilled halibut, side salad and miso soup

Snack:
yogurt, popcorn, or something else

It's pretty plain when written out like this, but it really leaves a lot of flexibility in terms of preparations, seasonings; I can have Indian or Mexican or Italian or Chinese food this way, as long as I watch out for the fats and privilege veggies and fish above bread or cheese.

Anyway, at long last there is the basic diet, and I hope it is somewhat helpful for someone out there!

Control

2008-12-17T23:10:00.001-08:00

Watching a close family member deal with the early days of cancer treatment is reminding me of cancer's biggest lesson: You Are Not In Control.

Those first few days and weeks were mind-numbing (or head-spinning; or both). You don't have enough information to make decisions, but you have to make decisions immediately. You are tasked with quarterbacking your own medical care though you do not have the lifetime of learning and experience that your doctors have. You must choose between providers without knowing what defines quality, or how it's measured. There is absolutely no way to find a shortcut solution to the months of pain and fear and difficulty that await you; and once treatment starts and you're pumped full of poisons and you're thrown vehemently off balance by nausea or bone pain or sadness or dying cells, there is exactly nothing that you can do that restores that balance until time and healing take their own natural courses.

I have always been a person who saw exactly what I wanted in any situation, and could figure out pretty quickly how to attain it. I am not passive. I confront, I pursue, I accomplish.

But cancer doesn't care about any of this. It laughs at initiative, scoffs at competence. The most painful loss in cancer is the loss of belief in control. Unlike a body part, removed surgically and cleanly under anesthesia, control is ripped away painfully--bloody and ragged and unwilling.

Recovering from cancer restores some of the illusion of control, but I gotta tell you, it is now impossible to revert to the full belief. There are situations happening in my life--I so wish I could share them, but for so many different reasons, and to protect so many different people, I simply can't. But I face these difficult situations and all I can see is that every alternative is fraught and imperfect, and there is exactly nothing that I can do to sidestep all pain and trouble. Perhaps I'd have learned this lesson without cancer. But I learned it with cancer, and life just keeps reviewing the lesson.

The Case of the Disappearing Cancer

2008-11-25T20:09:00.000-08:00

I've been sent articles several times already about this Norwegian study that concluded that some breast (and other) cancers may spontaneously disappear, without treatment. I don't really have much comment of my own, because before I could really think deeply about the study, I read this fantastic response by a "skeptical OB-GYN," who writes a terrific, point-by-point analysis. Some highlights:

The study only looks at incidence of cancer. It does not look at outcome and life expectancy. If it turns out that the women in the study group have a much lower incidence of death from breast cancer, because they are treated early and aggressively, it will justify the apparent over diagnosis of breast cancer.

And,

there is no way to tell the difference on mammography, or by any other technique, between the cancers that will disappear and the ones that will go on and kill the woman.

To me, these two quotes really say everything we need to know at this point. However, as winter comes and my summer tan fades, and I note in the mirror greater evidence of the premature aging effects of chemo; as I read on the web that a close family member's kind of lung cancer is often treated with Taxol, and I think back on the bone pain and the horrible allergic reactions; as I think about the months of my life "lost" to sitting miserably on the couch; as I think of the awfulness that is cancer treatment, I certainly hope that researchers follow up on this study and find a way to make the important distinctions. Let's get rid of chemo for anyone for whom we can!

"Good" cancers

2008-11-11T17:17:00.000-08:00

I've been gone for a long time. Mostly that is because of work--I've had a highly absorbing course to plan and then start teaching. I'm still in the midst of it, and it leaves little time for anything else. A little less, it's because I reached a point of feeling exhausted by the constant recognition of being a cancer survivor. It'll probably never be possible to see cancer as something that happened in the past, like that one embarrassing drunken night in college with my guy friend, which the two of us immediately pretended never happened; or the period of my life when I was unable to have an effective argument because I'd lose track of the logical flow of speech. Those things will never happen again. Cancer might.

Anyway, on that topic (somewhat), here's a blog piece that appeared in the NY Times today, by a guy with prostate cancer who rails against the notion of "good" cancer.

And let me just send a shout-out to a loved one who also has prostate cancer, but on top of that is in the hospital recovering from surgery for lung cancer, which most people would decidedly not call a "good" cancer. He is enormously healthy and I think he is as likely as anyone to beat cancer down again. (He had it once before, over 4 years ago, and was treated successfully with surgery--this is a new primary cancer, not a recurrence.) But again, cancer sucks. It just sucks. It keeps hitting all these damn people I care about, and even if they (we) survive, it still takes things away. Months... Years... Lungs... Breasts... And any illusion that any part of life is the smallest bit fair.

I want to end on that angry note, but I can't. I'm also enormously excited and have to acknowledge the election of Barack Obama. This is a man whose mother and grandmother both died of cancer. He knows the cost. In his infomercial, he said that his mother's death taught him that you have to seize opportunities when they happen, and suggested that that's one reason why he chose to run for President so early. He has a lot of critical priorities and I don't know where cancer falls on his list, but I can't help but feel hope, that this President really understands what a scourge cancer is, and how unfair and brutal it is, and how we absolutely must defeat it. Now that's a war I can get behind.

There's a new ad on my blog

2008-09-06T23:26:00.000-07:00

Look in the right-hand column. See the bobbing head? (I am not wild about that, but it came with animation, so there we are.)

Ryan, a Hodgins lymphoma survivor, took the lemons of his cancer diagnosis and made lemonade--and lemon hats, lemon shirts, lemon coffee mugs... Seriously, I like the irreverent attitude and non-pinkness of this swag, so if you or your cancer-stricken/cancer-surviving loved ones are looking for the perfect statement, go buy from Ryan. (I don't even get a cut!!)

Here's the one I'm planning to get (clickable image):

Almost unimaginable

2008-08-31T13:08:00.001-07:00

When I was first diagnosed, my oncologist talked seriously with Noah and me about whether we wanted to have children. Chemo often puts women around my age--late 30s and up--into early menopause. Sometimes it's temporary, just during treatment (as it turned out in my case); other times, it just keeps going after treatment.

We were advised to consider carefully whether we wanted to pursue egg harvesting or in vitro before I started chemo. It took about 2 seconds to decide that no, if the dice rolled that way, we were perfectly willing to adopt one of the many children out there needing a family and a better life; let's get going and cure me now, thank you.

As easy as that decision was for me, I'm sure it's quite tough for many women. And it seems unimaginably agonizing to think of learning you have breast cancer while you're already pregnant. The NY Times' latest thought-provoking breast cancer article is a long piece about the current state of treatment. It's really amazing--it appears that pregnant mothers can receive chemo through most of pregnancy without apparent harm to the developing child. Nonetheless, the depiction of new mothers--having just given birth, dealing with a newborn, and now going through more rounds of chemo--just makes me shudder. It is hard to go through cancer treatment. I stand and salute the women who do it with that much more at stake, and that much more to make it tough!

Role Models and Broken Records

2008-08-21T01:38:00.000-07:00

I was really surprised, and then really happy, to see that Christina Applegate is being so open about her response to her breast cancer. In case you've been on a desert island for the past few days--her mom struggled with breast cancer, surviving it twice, and Christina tested positive for the BRCA-1 gene. This puts her at high risk for getting breast cancer again in the future, so she opted for a double mastectomy, and then went on a morning talk show to tell the world about it.

As a starlet prized for her appearance, this has to be tough, but her attitude is great. And I just love the message it sends to all women who face the reduction or removal of breasts as a result of this disease: You don't have to be ashamed, you don't have to feel invalidated, and your life is far more important than your boobs. Oh, and along with those other women rushing out to buy fake ones anyway, remember you'll have perky ones in the nursing home.

It's no less traumatic to face a mastectomy, I'm sure, just because a celebrity has talked about hers. But it's just one more area of life in which we don't have to be silent, to hide in shame; we can speak out and own our experience, and know that we are still worthwhile and valuable even though something has been taken from us. Damn right!

Finally, I've said it before and I will keep hollering about it: We can cut our risk enormously by just watching what we eat and really exercising. Apparently most Americans already know this, and yet we're still not doing it. Watch a slightly fluffy treatment of the topic by CNN's Sanjay Gupta:

(It's looking like the embed might not be working; if not, here's the link.)

Now, I know it's hard. After losing 37 pounds post-treatment, I recently gained 6 of them back, and now I am having to watch my food strictly once more. (Exercise I have covered, with beach volleyball--go USA!!--at least 6 hours a week.) As I forego bread and use balsamic vinegar in place of salad dressing, I feel some pain. But a) eating healthfully is a lot more fun than going through chemo; and b) my life is too important not to do it!

Edited to add: I've already gotten rid of 3 of the 6, in just a few days. Yay.

A-ha...It's a theme

2008-08-18T22:14:00.001-07:00

Following up on my post from a few days ago: Today, salon.com's advice columnist replies to a letter-writer who, in her 30s, has survived cancer and isn't sure she wants to go back to her exact pre-cancer life. It must be really tough to be filled with a fire for living and have everyone else standing around you with buckets.

The letters section already has a little debate going (and, as of this writing, there are only 5 or 6 letters). Should she do what she wants, bucket brigade be damned, in the spirit of living her life to the fullest? Or should she rein in those impulses, recognize the precious gift that is a community of loved ones in her life, and accept some limitations in exchange for those ties that bind her to others and to this world? It's a hard question, and heck if I know the answer.

Exercise, again

2008-08-14T23:59:00.001-07:00

And again, the NY Times. Today, an article about the benefits of exercise for those undergoing treatment.

Who I was/Who I am

2008-08-11T23:13:00.001-07:00

The NY Times, in its ongoing fabulousness, has an article today about coping with identity changes, and I love it.

Two quotes in particular stand out. First,

A critical illness is like a great permission, an authorization or absolving. It’s all right for a threatened man to be romantic, even crazy, if he feels like it. All your life you think you have to hold back your craziness, but when you’re sick you can let it go in all its garish colors.

This is so true. And once the critical illness is over, the permission fades. You were allowed to deviate, given lots of leeway, even permitted to say NO to things and to live your life to maximize health rather than busy-ness. But as time passes, people stop thinking that you are delicate and must be handled with care; they start thinking it's time you stopped whining and started being like everyone else again.

The other quote I loved:

I wanted to be someone, a recognizable personality, a full-blooded, memorable human being, and not just a cancer patient. I had already lost the person I used to be, that healthy, energetic 45-year-old woman. I wasn’t capable of losing more. Other friends had their own spins on claiming individuality in the cancer world.

I alluded to this in an early blog post. At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.

What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.

I actually have to fight with myself not to just go the straight denial route, and turn my back on the truth that I had cancer, and ignore anything to do with cancer. Someone close in my social circle just started chemo (her first treatment was on the 2-year anniversary of my last treatment). It is surprisingly hard for me to see her go through this, in part because I just want to deny, deny, deny; and, unexpectedly, her reality becomes a constant undercurrent for me, reminding me of what I experienced and what I am as a result.

Welcome to the club, Christina

2008-08-03T21:54:00.000-07:00

None of us asked to join. But we have a new member.

What Not to Say

2008-07-30T23:32:00.000-07:00

Wow, this is a great summary of how to interact with people who have cancer--and it was posted on Craigslist, of all places! Craigslist is totally tha bomb.

I found it thanks to the Imagine Bright Futures blog, one I haven't linked to previously--but will.

Sad news

2008-07-25T12:27:00.000-07:00

Randy Pausch has died.

Cancer isn't a test. It doesn't separate the good people from the bad, it doesn't spare those who deserve sparing, it doesn't teach benevolent lessons and then release those who learn properly. It just kills people, indiscriminately, hastily, unfairly, too early and too often.

All Clear

2008-07-24T14:57:00.000-07:00

The MRI results came back--completely normal. :-)

I go back in 6 months for my regularly-scheduled mammogram, and an ultrasound just for better imaging.

Every time I get news like this it's like I just got my life back again. Which is great. You can find me this weekend, on the beach, playing volleyball. (Or, after dark, analyzing data and writing papers!)

Not quite on topic, but very important

2008-07-20T00:37:00.000-07:00

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

2008-07-11T23:05:00.000-07:00

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

2008-07-02T15:30:00.000-07:00

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)

2008-05-24T12:10:00.000-07:00

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

2008-05-22T10:21:00.000-07:00

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

2008-05-14T22:38:00.000-07:00

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!

And more...

2008-03-18T13:37:00.000-07:00

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...

2008-03-17T19:30:00.001-07:00

...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

2008-02-22T00:26:00.000-08:00

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!

2008-01-02T13:21:00.001-08:00

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

2007-12-19T09:47:00.000-08:00

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?

2007-11-29T18:26:00.000-08:00

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

2007-11-18T00:44:00.000-08:00

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...

2007-11-11T23:36:00.000-08:00

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!!

Because Cancer exists

2007-10-15T19:00:00.000-07:00

Time for a check:

How have you spent your time today? This week? This month?

How often have you done things that gave you joy or were deeply meaningful to you?

How much have you been close to the important people in your life?

At those times when you had a choice, how often did you choose to pursue connectedness and passionate engagement, versus rote activity that bores or deadens you?

When you were working, how much of your work did you invest with commitment, and how many of your accomplishments do you look back on with pride?

How much have you moved your body, felt your muscles and bones equal to the challenges you set for them? How well have you guarded your health and made choices to exalt your body?

How have you loved? How have you been loved?

If you felt bad, did you embrace the experience and live with it?

Who knows how much life any of us has. We have right now. One of my lessons from cancer was to live right now, and not wait to live years later.

Justice (and Treatment) for All

2007-10-15T13:43:00.000-07:00

Again, a flurry of recent news stories. I was particularly interested in this piece on Slate.com, which tackles the issue of "socialized medicine" and effective cancer treatment. It's interesting that this coincides with the American Cancer Society's activism drive to increase access to cancer treatment. The ACS wants more people to be treated, and to eliminate insurance problems as an obstacle to treatment. One obvious way to do that is to extend healthcare coverage through universal coverage options. Of course, that stirs panic among both right-wing and small-government types, and among ordinary people who might rather face the devil they know.

I could easily be among the latter. I am one of the incredibly lucky people who, when struck by cancer, had a fantastic health plan. I work at a university with a cancer research and treatment center, so I had access to physicians who were highly expert and used the most up-to-date treatments and resources. My university has a self-insurance plan with 90-10 coverage, a low deductible, and a low out-of-pocket annual cap. (I have thanked my 2005 self over and over for deciding to pay the higher monthly premium for this plan, rather than choosing the cheaper HMO.)

It's easy to imagine that a universal-coverage plan could limit my choice of physicians. Or perhaps it would limit what they could do to treat me--for example, maybe all medical care would be restricted to HMO levels. For someone who's had fewer limitations, like me, that is scary. On the other hand, I don't believe we have to fear such extreme restriction. And even if some restriction occurred, it seems only just for the few of us who now enjoy wildly disproportionate benefits to accept a mild adjustment downward so that our millions of disadvantaged neighbors can finally get some basic care.

And that's where the Slate article is especially reassuring. Looking at all nations with some form of socialized medicine, other than England--which is apparently abysmal for cancer treatment and survival--outcomes are far better there than here. Which tells me that, for all my choice and luck, I could be doing even better yet.

A couple of other links:
I took Taxol. My tumor was ER negative. Sucks for me.
Death rates are dropping. Hooray!

Are you aware?

2007-10-06T00:11:00.000-07:00

Yes--we think about Black people in February, and women in March. Now it's October, and if you're not seeing black and orange, you must be seeing pink. It's Breast Cancer Awareness Month. All together now...

Yay.

I've started to become one of those girls who aren't playing nice. The pink, the fluff, the incessant marketing machine... It feels a lot like the post-9/11, "Be patriotic! Go shopping!!"

There are some good reasons for a cancer to have a month--better than for large racial categories. Women over 40 should get an annual mammogram, and maybe seeing ads for pink toasters and pink toolbelts at this time of year can help them remember.

I also think there is some legitimate merit to giving people a way to do something about this disease. Getting breast cancer makes you feel helpless. I am certain that watching someone get breast cancer also makes you feel helpless. When I inventory my own personal relationships, I think of my husband, who had to go through 8 months of treatment and all the fear and anxiety, with nothing that he could really do to change my outcome. My parents, my friends... I am also a spooky exemplar of how many women are getting breast cancer, and how little we can do to predict or stop it. I'm a magnet for everyone else's breast cancer experiences, especially guys whose moms get it--I have heard from more than I can count on a hand, in the last year.

I know that people close to me want to change my outcomes, and I know they want me to understand how urgently they care. So what can they do? They can shop, and they can participate in big group activities like runs--the latter are even better, because they require personal pain and sacrifice. (By the way, one of posts referenced above links to a great Onion article, 6000 Runners Fail to Discover Cure for Breast Cancer.) After 9/11, I wanted to give blood, because--literally, and don't laugh too hard at my hokiness--I felt a desire to bleed for the sake of all the other people who had shed blood. A common fate kind of thing.

Yes, there are better things to do. Giving money directly to research and advocacy groups, volunteering at a cancer treatment center or a wellness community, regularly contacting members of Congress to lobby for better cancer funding (and healthcare, maybe?!)...all of these may be more powerful. They're also harder to do, and now that I'm back to my busy life, I know that it's a lot easier to do a few website clicks between meetings than to keep track of bills in the Senate.

[Along these lines, I got the following email a few days ago--it seems to offer the way to do something real, very quickly, and very easily. So of course I was suspicious!

> Please tell ten friends to tell ten today! The Breast Cancer site is
> having trouble getting enough people to click on their site daily to
> meet their quota of donating at least one free mammogram a day to an
> underprivileged woman. It takes less than a minute to go to their site
> and click on 'donating a mammogram' for free (pink window in the
> middle).
>
> This doesn't cost you a thing. Their corporate sponsors /advertisers
> use the number of daily visits to donate mammogram in exchange for
> advertising.
>
> Here's the web site! Pass it along to people you know.
>
> http://www.thebreastcancersite.com/

So I searched for this pitch on urban legends sites, and about.com had the following:

Except for the part where it says "The Breast Cancer Site is having trouble getting enough people to click on it daily," this dated email flier (circulating since 2001) remains basically true. In 2002 alone, the highly successful site and its advertisers funded a total of 1,624 free mammograms for underprivileged women, thanks to the daily clicks of visitors. The Breast Cancer Site has been reviewed by health advocacy groups and various media outlets and recommended by sources like Ms. Magazine. It is well worth a daily visit.

That is good news, and not even hard to do.]

Anyway, I started by objecting to the month, and here I've really defended it. It's harder to express my objections, but I'll try. A Month is reductive. The pink onslaught is infantilizing and trivializing. There is a tyranny to breast cancer culture that allows only a narrow range of expressions, emotional responses, and actions. (I'll never forget my first--non-Wellness Community--support group experience, in which new women like me were told not to think things we said, not to feel what we expressed, and more than anything, that praying was the only thing to do. I never went back.) I don't want to be either a pink-wearing blubberer, or a pink-wearing "survivor" in the mold of The Movement. Basically, I guess it's that breast cancer, though widespread, is still a really personal and individual experience--no two women I know have had exactly the same treatment--and I don't like feeling my personal experience forced into the dehumanizing context of the mob.

And finally--an annual reminder to get a mammogram didn't do a damn thing for me. I was too young to be getting mammograms. This week, I was on a conference call with three other fantastic bloggers (their blogs are now linked, at right) who were also all too young for mammograms when they were diagnosed. And I guess that's another reason I dislike The Movement--it's focused so much on women who are older, with different concerns and different worldviews. Perhaps Breast Cancer Awareness Month should be urging younger women to get their breasts groped--by themselves, by others (hello, Noah!), whatever it takes--get some hands on those boobies and check for things that shouldn't be there!

One last note for today. Today is the one-year anniversary of my completion of cancer treatment. I had my last radiation treatment last year, I got my survival certificate from Noah, and I walked out of the center and into my "new reality" as someone cured, post-cancer, and on the way to being healthier than ever.

My oncologist told me it can take a year for some side effects to ease. My hair is still only a few inches long; my feet have only recently stopped having pain and burning from the Taxol; my right armpit and lat are still a little numb from surgery. But overall, I am healthier and in better shape than I've been in years. My life, knock wood, is back "on track"--as a relatively young woman (and junior professor), there is a climb and a progression that characterizes the life path, and I'm no longer sitting on the bench watching other people hike by.

A year past cancer treatment. I gotta say, it still seems like yesterday.

Cancer has me

2007-09-30T21:46:00.000-07:00

Two in one day. I know!!

Got a phone message today saying that my aunt, who has multiple myeloma, is in the hospital. Things have been looking worse for her lately. She's survived almost 13 years so far with this disease, but it's nasty. Much worse than breast cancer (not a "good" one, for sure). I don't have details, but this is her second hospital stay in the last several weeks, and I know her current chemo has been extremely tough. So I'm feeling some concern, and it makes me reflective.

So...I guess this is kind of for her...

[ ]

Cancer has me
by one ear, like
a truculent child,
and marches me
to the window.

"Hand it over then."

All of it, turns out.

The collector, fat-faced,
flat-mouthed
Brushes each thing with listless fingers
as I thud it
protesting
on the counter

Lean brown arms and legs
(The muscles wither,
lying there--)
Breath, gassy and bright.
Clarity of thought,
a smooth skein--
the collector scuds a thumb
in the middle, leaves
a tangled heap.
A row of tomorrows,
lined neatly like dice.
The collector sneezes, and
they tumble
one into the next
and lie still.

Hardest of all, that rounded thought,
opaque with certainty,
solid as eggshell
surrounding me,
that I am safe
and blessed.

At the end, I stand
not naked
but stripped

Some things they let me keep.
I hold them
piled like smelly clothes
as Cancer shoves me onward,
a boot to my back:
Fear. Pain.
Regret.
Long hours
in which to know this all.

The door behind me,
with a clang...

It’s not a cell, but
Vast white, limitless
Nothing

I can’t see where
to put my foot.

But my arms open
and let fall what I held
so my fingers can pull
from under my tongue
a talisman,
smuggled,
now in my fist.

Cancer is on this side
of the door--with me--
But quiet now,
unseen;
I won’t hear a breath
Until one day
That boot crushes my neck.

Right now, though--
this moment--
Warmth starts in my hand,
hard with victory.
I close my eyes.
I melt into whiteness.

Don't worry, I don't drink much

2007-09-30T03:32:00.000-07:00

If you missed this news this week, you probably also haven't heard that OJ's back in the justice system or that Iran's president didn't quite get to "make it" in New York.

Basically, a new study apparently shows that women who drink alcohol regularly--even as little as a drink a day, and regardless of what kind of alcohol it is--face an average increase in risk of breast cancer of 30%. Now, as a Wired blogger helpfully points out,

Thirty percent is a big deal: Reuters points out that women have, on average, a 1 in 8 lifetime chance of developing breast cancer, so a 30 percent change ups that chance to 1 in 6.

(By the way, don't miss the photo accompanying that article. Someone has quite the gift for appropriate illustration.) Anyhoo, while the risk is substantial, I've been scouring the various articles for more detail on methodology, and I can't find it. So my personal jury is still out on this one (and thank goodness; I needed some quiet inside my head).

The articles that get into a possible mechanism for the finding generally say that alcohol is hypothesized to disrupt hormones, and this leads to the kind of estrogen imbalance that causes breast cancer. Well, my tumor was not fed by estrogen (or progesterone). But none of the articles mention whether the risk was equivalent across tumor types, although the only proposed mechanism is hormonal. That is frustrating.

The study on which my nutrition program is based, for example, showed no major benefit for women who DID have ER-positive tumors, but a big benefit for ER-negatives like me. It's clear from virtually all breast cancer studies that the tumor type is one of the biggest "it depends" factors out there. So it would really be nice if the press had covered this aspect. Even the medical press has not. We'll see what happens when the study gets published; hopefully we'll find out then.

In other news, I am very happy to see this next article. Basically, it tells me that I can forget about needing to buy sexy lingerie or plan romantic weekends: I got breast cancer, and that's a marriage boost in itself. Yay! (Noah's thrilled too!)

And finally, looks like those newsmakers in Barcelona aren't done yet (or, those who weren't invited decided to prove they still matter, too). Anyway, today's LA Times will report that childhood exposure to DDT has been shown to increase later risk of breast cancer by a whopping 400% (though the sample size is admittedly small). Since DDT was outlawed before I was born, it may not have affected me. But it is yet another reminder of how many scary chemicals we swim around in, and how much predestination is involved in whether each of us gets hit by something terrible.

Survivorship Plan

2007-09-25T16:08:00.001-07:00

Boy, the articles just keep coming.

Noah sent me this bit from Yahoo! News about survivorship plans, a new trend (like fab shades!) in cancer care. My own oncologist did not give me a written plan, but I am clear on many things:

For the next year (like the last), I'll have checks every 3 months. This includes blood testing, to look for chemical markers of breast cancer recurrence, and physical exams.
Once a year, I have a mammogram. If anything funky is found then or at any other time, I may also have an MRI.
If I were to notice any difficulty breathing or other heart-related symptoms, I expect I would have an echocardiogram, since I had some of the chemo drugs that can cause heart failure. But there is no special monitoring of that because I've seemed heart-healthy.
After the next year, my exams will go to 4- to 6- month intervals for up to the 5-year mark. After that, they may revert to annual checks.
I have my nutrition plan with my nutritional oncologist, ongoing.
I have copies of all my records, including pathology reports and treatment records.

What I don't have is a very specific list of symptoms to watch out for. I have a mixed opinion of that piece of advice. The power of suggestibility surely has to be weighed against the benefits of knowing what to look for. If I knew that a persistent pain in the 3rd rib from center was a warning sign of metastasis, I'd be rubbing that 3rd rib constantly to assess it, and pretty soon it would indeed hurt like hell! So perhaps being in the dark a bit is good for me here.

Overall, though, it seems to me that better knowledge and awareness are being emphasized, and that is terrific. Also, the medical community is awakening to the fact that cancer treatment is emotionally and cognitively overwhelming, and realizing that we'll all have better outcomes if physicians take on just a tiny bit more of the burden of managing information (not just drugs and procedures). Based on the confusion I saw even in intelligent, thoughtful members of my own support group, this will surely help!

Clip'n'Save list of Cancer-Fighting Foods :-)

2007-09-22T14:24:00.001-07:00

Boy, I gotta say--the information is certainly out there if you want it. Why didn't I pay attention earlier? It's not like this list of good cancer-fighting foods is boring or yucky. It even includes chocolate!

Another good reason to play volleyball

2007-09-19T18:05:00.000-07:00

From Ode Magazine, a quick note on the benefits of Vitamin D (maximized through sun exposure) for a variety of ills, including breast cancer. :-)

Oh yeah, my in-house portrait photographer keeps reminding me I need to post the latest, for those of you who haven't seen me with hair lately. Here ya go!

More nutrition news

2007-08-25T00:30:00.000-07:00

Before you ask, my back has felt better this week. Lots better. So, so far I am not calling back for an MRI. I'll let you know if that changes.

Now--the LA Times today has a really terrific article about nutrition and cancer. It talks at length about foods purported to lower cancer (or recurrence) risk, and the strengths and flaws in various studies. I'm happy to see many of the recommendations of my nutritional oncologist, Rachel Beller, validated in the article. She really seems to base her approach on solid research and evidence, which of course appeals to me.

Among the key points for me:

In one study, breast cancer survivors who ate 5 servings of fruits/veggies a day and exercised regularly achieved a 44% decrease in the rate of recurrence. That's great! Those who only ate the veggies, OR who only exercised, did not get any benefit.
Cruciferous vegetables (broccoli, kale, brussels sprouts), tomatoes, spinach, apples, and blueberries are among the key foods that have been shown beneficial.
The benefits come from the whole foods themselves, not supplements of just one nutrient or chemical at a time.
Excess weight is the #2 risk factor for cancer, behind only smoking.
A scary factoid: for Americans, 52% of "vegetable" consumption comes from just 3 sources: iceberg lettuce, potatoes, and canned tomatoes. Yikes!

So, Rachel has me getting the vast majority of my calories these days from veggies and fish (or tofu), with fruit and yogurt close behind--and the items on the list are definitely staples. And I'm playing volleyball for hours a week, and walking Kibble as well (though less than he'd like). Everything is as organic as possible, so that there aren't toxins and chemicals competing with the positive effects of the food. I'm almost down to my goal weight, which removes that as a risk factor.

It is hopeful and amazing to think that there could be a cell sitting inside me, with the potential of turning into another tumor (or of starting a cascade of cells tumbling in metastatic unison to become something really ugly), but what I'm doing could stop it. It's like Schrodinger's cat: I do one thing, and I get cancer. But I do another thing--perhaps the thing I'm doing by following Rachel's advice--and I live 50 more years cancer-free. That cell just sits there, and thinks about it, and then shrugs and stays healthy.

Anyway, everyone: Lose weight if you need to lose it, eat good things, and move your body! Let's all give the giant middle finger to cancer!

Another 3-month check today

2007-08-17T17:03:00.001-07:00

Hello, and long time!

No news is good news, in my case. I have celebrated my summer-after-cancer by travelling to Europe, tending the garden, playing with my dog, and having fun with Noah. I have played hours and hours of volleyball--generally with more energy and skill than before treatment. Basically, I feel great.

Of course, cancer is evil. I could be feeling this great and still have something wrong. Today, I had my latest 3-month check (and it's a year since I ended chemo!!). The physical exam was clear. I haven't yet gotten results of my blood test, but I'm sure I would have heard if they were bad. There's just one little thing: I've had a nagging lower-back pain for about the last month. It could be travel, different beds, volleyball, our own wearing-out bed, or even the way I slump as I sit here in the computer. But once you've had cancer, everything is cancer.

So the oncologist has a "one-month rule": if a pain persists for a month, we take it seriously. We do an MRI and check it out. Well, I'm almost at a month with my back, but it's felt better for a couple of days. Metastases don't get better, so if the pain goes away (or even eases a lot), then it's unlikely to be a metastasis. But if I am still feeling like this in a week, I'm supposed to call back, and we'll be doing an MRI.

I'm not too worried, but it's all relative. I'll be paying attention to my back for the next week, and trying hard not to be a hypochondriac at the same time. A good friend of my sister-in-law's was just diagnosed with metastatic melanoma in his spine. Started as a backache. He had it checked out, and now things are pretty serious for him. So it's easy to freak out a bit.

Otherwise--there have been some interesting cancer stories in the news lately. Many people have asked for my reaction to the news that a high-vegetable diet does not help prevent recurrence. My diet (which I'll post here soon) is not that. It's a basic high-fiber, low-fat diet that tends to have lots of veggies, but only prescribes the standard RDA kind of approach.

(I saw my nutritional oncologist yesterday, too, by the way. I'm back strictly on the plan for a while, to lose a little more weight and be more disciplined after our European culinary free-for-all.)

And I really found this piece, in the NY Times, poignant. Also scary. It's written by a guy (a cancer survivor) visiting an ex-girlfriend and former fellow survivor, now terminal patient. While searching for the link for that, by the way, I also encountered this somewhat treacly story (though, to be fair, I actually agree with it) about finding the positives from a cancer experience.

OK--I'll be sure to update y'all with the verdict this next week!

Poem

2007-05-30T01:08:00.000-07:00

I like this poem. My experience is certainly not this dire, especially these healthy days; but the awareness becomes just as sharp.

What you realize when cancer comes

You will not live forever--No
you will not, for a ceiling of clouds
hovers in the sky.

You are not as brave
as you once thought.
Sounds of death
echo in your chest.

You feel the bite of pain,
the taste of it running
through you.

Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears.

Your children are stronger
than you thought and
closer to your skin.

The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace.

You want no more confusion
than what already rises
in your head and heart.

You watch television less,
will never read all those books,
much less the ones
you have.

Songs can move you now, so that
you want to hold onto the words
like the hands of children.

Your own hands look good to you.
Old and familiar
as water.

You read your lover's skin
like a road map
into yourself.

All touch is precious now.

There are echoes
in the words thrown
before you.

When they take your picture now
you wet your lips, swallow once
and truly smile.

Talk of your lost parents
pulls you out, and
brings you home again.

You are in a river
flowing in and through you.
Take a breath. Reach out your arms.
You can survive.

A river is flowing
flowing in and through you.
Take a breath. Reach out your arms.

-Larry Smith, from Remains

Fear

2007-05-18T13:40:00.000-07:00

Today's CNN home page features the headline Cancer Fears Self-Fulfilling, and I was immediately curious. I was wondering whether it would say that people like me, who have had cancer and now have a recurring dread or even terror of its return, might actually hasten bad news through our fears. Of course, the article isn't about that--it discusses how there are so overwhelmingly many things that can give us cancer that many people don't bother to take any preventive steps.

Well, that first, then: Immediately after ending chemo, I addressed my biggest remaining risk factor by losing 30 pounds. I was hoping to lose 36, and haven't yet, but I've kept off the 30 with really no trouble. As for other changes, I've started taking curcumin, after Judy alerted me to a study that showed it prevented later metastasis in mice. I know that the internet story about microwaving plastic is a hoax, but I still avoid microwaving plastic these days--what the heck. And I do try to buy organic and avoid any of those chemicals that I can--but I still breathe the air in Los Angeles. I hope everyone does these kinds of things. And doesn't smoke. And if any of that doesn't describe you, I hope you'll change.

But back to fear. There really is an ongoing fear that comes with this disease. I am so happy now, being healthy and strong and in better shape physically than I have for years. My brain is back, my body is more than back, my scar is fading, I'm going to Europe for a dream vacation, and basically my life is just incredibly precious and wonderful. I can feel the intense enjoyment of just living (even on a sad or irritable day) so much more readily now. There is a kind of insane joy just in seeing my hair get longer.

And that same awareness can make it very frightening to think that I could go to the doctor in July and be told I have metastatic cancer that can't be cured, and have to go back on chemo and get weak and blurry and bald, and know that forward momentum is for other people's lives and not mine. There is often a fairly active fear that the rug will be pulled from under me.

The kind of cancer I had is most risky for the first 2 years. This is constant knowledge. Each check-up is more portentous than the next, which is great when they are "all clear." Even after the 2 years, the declining slope of the risk graph is still pretty high until 5 years, and then it drops way down. So I will still have some time to worry.

And to wonder how to live. This may seem easy, but here's a puzzle for you. You are me. You still want to have kids, and you don't have a lot of time left for that. But the cancer community advises waiting at least 2 years after treatment before you start to try, in case you do get a recurrence and won't be able to be around for your kids. OK, now I'm 41. Then add in my own personal risk profile, which says that I probably have to worry for 5 years post-treatment, and now I'm 44. What do you do? Do you have a kid? How sure do you have to be that you'll live in order to have them? How sure are you that you will?

The Fog

2007-04-28T12:24:00.000-07:00

Today's New York Times has a great article about chemo brain--a phenomenon that's apparently being taken more seriously these days.

During our one-week cram session to learn as much about breast cancer treatment as possible, Noah and I repeatedly saw references to chemo brain. The research was inconclusive, but many women report cognitive deficits--sometimes severe--during chemotherapy. The best study we read about, from the June 2004 issue of the journal Cancer (and mentioned here, about 3/5 of the way down the page), noted that many women reporting cognitive impairments had them before chemotherapy started, so it was unclear whether the cause was the toxins or just the preoccupation and anxiety that come with cancer. The newer research, linked above, is more grave: it appears that brain cells are killed by the chemo, and that the effects can last a very long time.

Of course, for me, this was perhaps the most frightening potential side effect. My identity is pretty tightly structured around intellect--which provides my livelihood, too--and the thought of losing mental acuity... You can imagine.

Like most people's, my oncologist was sympathetic but not especially helpful. "It could happen," was all she could really say, and she pointed us to that 2004 study, which offered hope in its suggestion that it might be emotions, not neurons, causing trouble for many people.

I did have chemo brain. You can ask Noah, who tried to be forbearing but occasionally had to point out that I was impaired. I lost words constantly. I was a bit ditzy and scrambled (good thing I had a platinum blond wig for those moments, so I could really be a stereotype). It was not as horrifying as I'd feared--more like mild aging, maybe, than a brain injury--but it was real, and annoying, and not the way I want to live.

And I'm really happy to report that it went away, very quickly after the end of treatment. I don't think I have any lasting cognitive effects at this point. I've been able to go back to work and put sentences together, both in papers and in front of MBA classes. That has been one of my many reliefs in life A.D.

New direction

2007-04-12T10:58:00.000-07:00

Hi folks!

I'm happy to say that breast cancer has increasingly become a background (rather than foreground) presence in my life. The rhythm of my days is no longer dictated by treatments and weakness. Sometimes, perhaps, I even leave it too far behind, caught up as I am in the headlong pursuit of tenure and the juggling of daily demands.

In any case, I find myself with less to say regularly about the cancer journey--and I'm glad of that, and hope it stays that way! But that doesn't mean I need to throw over the blog. I think I'll morph it into another common blog form: the compendium. I'm constantly struck by the constant barrage of news coverage related to breast cancer. I figure I'll post links here, and--when something is particularly interesting--even comments.

And never fear, those who prefer the logorrheaic blog, I'll still post when noteworthy things arise!

So, to begin:
Bad News
So far, John Edwards is my favorite presidential candidate for '08. And although I didn't love getting added to a fundraising list when I wrote a note of support, I've been pleased and impressed by how he and his wife Elizabeth have handled her recurrence of cancer. It was terrifying to hear about her. Many articles refer to her "particularly deadly" form of cancer, the "triple-negative" (estrogen-negative, progesterone-negative, her-2 neu negative). Well, I'm a triple-negative too, with the highest (worst) possible Bloom-Richardson score. News like this makes me seek refuge in the numbers, and hope I land on their good side: 80% chance I'm free, 20% chance I'm not.

Cute News
The LA Times yesterday carried an odd but somewhat heartwarming story about the recovery of 2000 wedding dresses, intended for a breast cancer fundraiser, then stolen, then found at the Mexican border.

Important News
Not that it's clear at all, but the news/debates on best diagnostic practices is worth attention: good summaries at salon.com.

Girl, resumed

2007-03-20T22:16:00.000-07:00

So how did I spend my first anniversary of a cancer diagnosis? In China.

It was a work trip--I accompanied 76 MBA students (with several faculty & staff colleagues, too) to Shanghai, where we spent 5 days meeting with companies from Starbucks to APL shipping and 2 days seeing the sights. Shanghai is like a few New Yorks piled on top of each other: busy, bustling; horrible traffic (less volume than LA, but much more insane); and, from what I hear, more construction cranes than in the rest of the world, combined.

It's a shopper's paradise where you can get North Face jackets for about $18 each, and knock-off Birkin bags for about $40. A one-hour foot massage that was the best of my life was about $3.50. About halfway through, I began feeling really, really guilty about the guys who were sitting there giving the massages. When I pay $3.50, you know he is getting at most half of that (and probably less) for his hour's great work. And Starbucks--which is all over Shanghai--still charges $4 for a latte. China is getting rich on the backs of its poor. The gifts I bought for people are pretty much all handmade, because labor is still cheaper there than machinery. I could hardly stop purchasing, but there's definitely a guilt factor involved. And for all the great service we got everywhere, there's not even a custom of tipping!

Shanghai is not traditional China; we made a brief visit to SuZhou, nearby, and that was much more quaint and old-fashioned. Still, Shanghai has great energy and a breathless feeling of hastening progress. It was exotic and invigorating, and everyone we met was looking forward with a lot of hope. As a place to mark my first year AD, it was perfect.

Girl, interrupted

2007-03-13T09:27:00.000-07:00

February 26, a year ago.
I'm in the shower, shaving an underarm, and my fingers slip in the soap, down just a couple of inches. It feels like I have a knot, like a raised bruise, only it doesn't hurt. I check the other side--no knot. I say aloud: "Shit." Just doesn't seem normal.

Out of the shower, I put lotion on Noah's fingertips, place his left fingers over the knot, his right on the knotless other side. He feels it immediately, nods--but sure, of course, that it's nothing.

February 27, a year ago.
I call the faculty clinic. My voice rises, a little shrill, when it looks like I can't get a same-day appointment. But it works out.

Fibroadenoma. That's what Dr. Sapkin says, after finishing the exam. "I'll refer you for a mammogram to be sure. Don't worry if they also do a biopsy--they are abundantly cautious at the breast center."

A year ago today.
In previous days, I've had my first mammogram ever. The knot showed up as suspicious, so I've also had an ultrasound and biopsy. Also suspicious, but then I had to wait several long days for the lab results. Now I'm back at the Norris Cancer Center, Noah with me for the first time in the series of appointments (since we've been sure, 'til now, that it was really nothing). We're still waiting to hear "fibroadenoma" confirmed, and we've planned a celebratory lunch afterward.

When the nurse comes in, she's surprised to learn that we are there for the results. I'm asked repeatedly for my family's cancer history. We're shown to an exam room, I'm put in a gown. We wait.

Dr. Silverstein, the surgeon, surges into the room, all breezy confidence. He examines me, leaves the gown down like I might not even notice, draws a boob on the whiteboard. (We quickly realize that he spends his days drawing boobs. Every exam room has some of his boobs on the board.) He leaves to check the labs, and no one has said anything to reassure us, and we look at each other, and I am finally scared.

Then he comes back, still breezy, and announces it just like that. "The bad news is, that thing is cancer." He points with his pen, like a sword. "The good news is, we're gonna cure you." Noah and I lock eyes across the room, jaws hanging, faces pallid.

Talking follows, lots of it, the 40-minute crash course in breast cancer, the first dozen decisions made in fog and haste. We meet my oncologist, talk about surgery in 2 days. After an hour in the maelstrom, the medical staff all leave, and we're alone in the exam room, with pictures of boobs--front, side, whole circles, circles with pie-shaped wedges removed, circles with a dark blotch of tumor on the right-hand side--looking back at us.

I say to Noah, "My life is gonna suck."

We go to the lunch anyway, and I taste nothing.

Quick note

2007-01-31T22:40:00.000-08:00

Yes, folks, I'm still here. I've been getting back to my life in a big way--which means work, work, work, writing, writing, writing. (Papers, not blog entries.) Sorry for the silence. The biggest reason is that I have to write an update on The Scare last month, and I just haven't been ready to do it. Soon, though.

Meanwhile--yesterday I had my second 3-month check (yay! I've been out of chemo for 6 months now!) and all was clear. Very good news, of course! I've lost another couple of pounds and am back to most of my physical activity and am really feeling great.

Of course, then, today all over the news is the sad notice that Molly Ivins has died of breast cancer. Dammit, that sucks. First of all, she was amazing and one of my heroes, even though I've apparently been pronouncing her name wrong all these years. Second, breast cancer. Gah. Just when I can start to think of it as innocuous again for a few minutes, it whacks someone fantastic way before her time. Stupid disease.

Anyway, I *am* here, and I'll write a real update (hair pics, too!) very soon. Really!

There and back again

2006-12-05T22:45:00.000-08:00

Here's what I did on Sunday: I played a game of volleyball on the beach.

Doesn't seem like much, but I haven't played a game of volleyball since March. The twelfth, to be exact. The day before I had surgery.

Damn, it felt good. And I didn't even suck (much). My surgery arm--the one for which I have to be vigilant against lymphedema--got pink, but didn't swell. I stopped after one game, but next week I'll play two.

***

Even after going through it myself, it is really hard to fathom just how much chemo takes out of you. I remember struggling to walk up the stairs in our house: gripping the handrail, lifting each foot heavily onto a step and pausing to rest before continuing, feeling my legs quake as I asked them to work that hard. One day, Noah--seeing how bored and sad I was, and wanting to help--played cheerleader and tried hard to convince me to go see a movie. It sounded like the most exhausting idea ever; I couldn't imagine having to sit upright in the chair for that long, let alone make the trip to the theater. The other night, we went to see a movie and it was so feather-light; the farthest thing from exertion.

I look back and shake my head. It seems impossible that a movie was too exhausting even to try. And it happened to me. If anyone out there knows anyone going through chemo, please remember: the experience is really unimaginable. Some days there won't even be a movie. But if all goes well, in the future, there may be a volleyball game.

Giving thanks

2006-11-23T00:10:00.000-08:00

I’ve always thought about reasons to be thankful at Thanksgiving, but this year my feelings are amplified.

I’m thankful that I’m done with the 7 months’ journey that I took this year. I’m thankful that I feel better, healthier, stronger. I’m thankful that my 3-month check is negative, and that I hear new stories every week about some woman who had breast cancer once, and never had it again. I’m thankful that my hair is returning.

I’m thankful for great doctors and incredible nurses and insurance that lets me get whatever they say I need.

I’m thankful for all the friends who were better friends than I knew, who called and came over and sent e-mails and made sure I was hearing them even when I wasn’t reaching out to them—especially Maia, Christina, Alexandra. I’m grateful for an extended family, part of which I only gained 6 years ago, who offered everything from moral support to medical advice (Andrew) to some of the best cancer quips (“fucking bad news!” –Steffi) I’ve heard.

I’m thankful for books on tape from Bernadette and Lara, for Harry Potter movies from Alison, the Gilmore Girls from my mom, books from Judy. I’m thankful for flowers from my mom and dad, Chris J. and Melody, Chris D, Rick and Joanie. I'm thankful for scarves and good body-smelly things from Sarah. I'm thankful for Lissa's care package, with comic books and candied ginger and great CDs. I’m thankful for the juicer that Maia, Alison, Lara, and Ena all sent to keep me healthy and hydrated during chemo, and the book of juice recipes that were as yummy as could be. I'm thankful for the DVD player from Mom, Dad, and Dan that kept my mind off the needles every two weeks. I'm thankful for Rick and Joanie's four-leafed clover, and the acupressure wristband that staved off nausea even on the worst days.

I’m thankful for the cards, e-mails, and notes from so many people that I won’t even try to list them now, because I’m worried I’ll leave someone out, and everyone is so important to me. But later, I’ll go get all those cards (I’ve saved them all!) and come back and edit this post to include every name.

I’m thankful for the comments on my blog, which let me know that people were keeping track of me and interested in how I was doing.

I’m thankful for my parents, who cried on the phone when I told them my news, and then stiffened up just as strong as they could and insisted on being there for my surgery, washing my hair afterward, doing whatever little errands and help they could find. They answered the call when I was in the darkest weeks of chemo, each coming out for a full week to keep me company and bring me cheer and do more errands. They sat on the loveseat while I lay on the couch, ensconsced in pillows and misery, and talked or read or just were present. They sent flowers every single week. They kept track of every date. They hugged me and their arms told how much they loved me and wanted me to heal.

And I’m thankful for Noah, who had his own 7-month cancer journey by my side, and who travelled it carrying my burdens along with his own. I’m thankful for how he tried to give me ease in every way: going to every medical appointment, bringing me popsicles and drinks during my chemo drips, shaving my head for me when the last bit of hair had to go, holding me when I was desolate, playing Battleship when I was bored, making countless trips to the grocery store for the one palatable thing, making that call to my parents when I was really down, urging me to exercise, to get out in the world, to live life throughout treatment. He bit his tongue when he wanted to argue, bowed his head when I was short-tempered, and never looked at me differently when my hair was gone and my chest was a little lopsided. He celebrated the end of chemo, then the end of treatment, with as much ferocious joy as I did. I know that a lot of women face double the stress when they deal with cancer, because they have to fight not only a medical battle, but a whole bunch of personal ones, too. Noah was the strongest of a whole phalanx of people who encircled me in a web of linked arms, making sure that, while I might be jostled around a bit, I would never fall.

I can certainly feel sorry for myself, I can ask “why me,” I can resent the hell out of this experience. But it has also shown me how much I have to be grateful for, and this Thanksgiving, it’s so much that I can hardly contain the gratitude. So thank you all, and I wish you as much joy this year as health, as friends and loved ones, as the beauty of life, can bring.

I keep remembering kindnesses not mentioned here, and coming back to add them--so if I have unforgivably not mentioned one of yours, please check back! I'm editing a lot!

A thump in the chest

2006-11-20T23:03:00.000-08:00

It hits at the oddest, most unexpected times. Steffi told us that cancer cleaves your life in two. There's no longer one long, smooth, unbroken track; instead, you have BC (before cancer) and AD (after diagnosis). And once you fall, sprawling, over the rut into AD, you can never go back again.

So I'm reading a great little piece in Salon about giving thanks at Thanksgiving, and the clarity and wonder that come from living past cancer. A very nice piece, and I completely agree. Then I look at the letters, and one woman writes that she is grateful for never having had cancer.

Which is when I get the thump. Because, unlike the letter writer, I have had it. I know lots of people who haven't--far more who haven't than who have. And I used to be able to have that same relieved, satisfied little feeling of being one of the ones on the good side. Now I have to check that box on all the doctors' forms, and I have to claim that history (in both medical and symbolic senses). Boo hoo, me.

Yes, before you rush to reassure me, this glumness is accompanied by the recognition that I still have the thing to be grateful for. And maybe it's even more profound. To walk with death, and come out still alive; where would all our heroic tales be without that? The Salon article itself talks about how life AD is a little sweeter, a little clearer, for the darkness that we pass through to arrive back at life. I get it, and more than intellectually. I do feel deeply, profoundly grateful, and the world is definitely bright. I love feeling better every day. I love being back to my life. I love how much I appreciate it, and how I can dismiss the little annoyances, because of the past 8 months.

But still the sense of loss. Cancer is the gift that keeps on taking.

Lucky

2006-11-11T12:50:00.000-08:00

For much of my life, I've been relatively glad that I haven't won (or played) the lottery. That's right. It always seemed to me that I had pretty darned good luck, but in a mild way; and I worried that any exceptional good luck (like a multimillion jackpot) would have to be offset by a commensurately horrible experience.

As you can imagine, since March 13, I've been thinking that now is a fine time to start playing the lottery.

My diagnosis was a piece of really crappy luck. And everything that has happened as a consequence is stuff that I would happily forego, if only I didn't have to have this diagnosis. And yet, it turns out that the luck baseline changes once the diagnosis is here. Although it's always sounded ludicrous to me that flood victims, for example, praise God for getting them through the flood alive (I think, shouldn't you be pissed at God for sending you a flood??), now I understand. A horror strikes, and you don't get to use your old frame anymore.

So then, I think, I've been very lucky. I was lucky that the tumor was only half the size that the doctors thought before surgery. I was lucky that there was no spread into my lymph nodes, and no metastasis. I was lucky that my veins held up to the chemo, and I never had to get a port or a pic line. I was lucky that my skin had no problems with the radiation. I was lucky with timing: we delayed the start of chemo until I finished teaching in spring, and I started teaching in fall two weeks after the end of chemo. So I lost a summer--but I've otherwise been able to stick to the normal seasonal schedule of my life. And I was lucky that it was summer when I had to sit nauseated on the couch, since I was not expected to be anywhere by my job, and could continue getting paid without having to take formal leave--working when I could manage to. Think of the incredible luck, and luxury, of that.

And I've been phenomenally lucky--in the sense of "the harder I work, the luckier I get"--because I am well insured and had planned well. Two years ago, we switched insurance plans into the most powerful and flexible PPO that USC offers. This year, I'd put extra money into our medical spending account (thinking we'd get lots of eyeglasses and physical therapy). Also, though I didn't end up needing it, I signed up for the supplemental disability plan. All of this means that I have had virtually no financial concerns through this whole process. My out of pocket maximum for the year is just $1000, and much of that was covered by the spending account, so we've probably written less that $200 in checks so far. If I needed to go on disability, I would get something close to 6 weeks at full salary, and after that would get over 50% of my salary.

I contrast this with the experience of my aunt, who has had to go through treatment for cancer without private insurance, and who has had to forego certain treatments or certain drugs--or be told that she can't be treated with a new protocol until she gets substantially worse, because that protocol is so expensive that it can be provided for her only if her need is dire. She owes tens, if not hundreds, of thousands of dollars to her oncology hospital, and the only asset she can maintain as a result is her home.

Cancer treatment is brutal and unhappy anyway (even if I sounded chipper). When I hear other people's horror stories about insurance denials, high bills, and struggling to work throughout chemo, I feel astonished and relieved that things have been so "easy" for me. Lucky, lucky.

Oh, and last week I had my first three-month check--blood tests and physical exam. I got the all clear until late January. I'm in Philadelphia at a conference, feeling energetic and healthy and fully involved in my life again. Lucky, lucky.

Signs

2006-10-16T23:50:00.000-07:00

Haven't posted since the end of treatment and thought I should check in briefly. I'm doing well; haven't been sick again (knock wood) and my energy is coming back steadily. Another hair update soon, I think. I've been out in public a couple of times with my GI Jane look, though I still don't really feel the head's ready for viewing.

A couple of nights ago, I was at Whole Foods and, as I got back to the car, saw a woman in the parking lot with a bandanna covering hair like mine. I was wearing a wig, but wanted to whip it off and call out, "Hey, look! Me too!"

Having cancer has made me a lot more aware of the many difficulties and tragedies that people all around us face. (Also, when Noah and I watched a 9/11 documentary, we saw a guy who was in one of the stairwells when a tower came down, and he rode that stairwell down in the collapse--something like 60 stories--and survived. I thought about him walking around in the world, mingling with thousands of strangers who have no idea what he's been through--no idea that he survived the collapse of the twin towers.) It's impossible to see what people have survived, what they are currently enduring. I wish we all wore big signs: "In treatment for breast cancer"; "Parents died in a plane crash"; "Currently nursing my husband through terminal illness"; etc. Yes, it may be macabre, but it just seems like almost everyone has faced tragedy, and deserves tenderness, and yet we are all so oblivious to everyone else's pain because we just can't see it.

Light candles and hope this is for good!

2006-10-06T13:44:00.000-07:00

Here's what Noah presented to me at 11:01 am, after I rang the ceremonial "done with treatment" bell at radiation oncology.

T-minus-27 hours

2006-10-05T19:49:00.000-07:00

One more radiation treatment left.

We had a hiccup on Tuesday, when I arrived for my appointment and was told that the machine was down. It couldn't be fixed in time for me to make it to class, so I had to skip treatment that day. I really wanted to finish on Friday--can you imagine having to wait the weekend, knowing that your last would be on a Monday? So the dr agreed that I could have two treatments in one day. Today, I got up early and got to radiation for an 8:30 appointment, then went to Beverly Hills to meet the nutritional oncologist at 12:30, and then back down to Torrance for radiation again at 4:10. (I had time to stop home twice, between appointments.)

The rad onc tells me that this week should be the time for my worst skin reaction to the original radiation field, and next week will be the worst in the areas covered by the boost. I do have some redness, and the top of the field looks like I got an odd, rectangular sunburn. The skin's a little toasty--leathery--the way sunburned skin can be, but still not too bad, and if it starts getting better from here, I should be fine.

The meeting with the nutritionist went great. She said I'm doing really well (18 lbs down, reflecting a slowdown this week--but she says this is a really fast rate compared to most of her other patients). My goal has been adjusted a bit--I have another 18 lbs to go, and she may still push me further after that. I don't go back for another 8 weeks. Since it took me 8 weeks to lose the first 18 lbs, I hope to lose the next 18 lbs in the next 8 weeks. It'll take some work!

After my last treatment tomorrow, Noah and I are having a celebration day. We'll go to brunch at the North End Caffe in Manhattan Beach, one of my favorite places--a place I've not patronized since my diet started. I'll be cheating on the diet tomorrow, for sure. Then we'll go for a hike in the Santa Monica Mountains, then back down to the South Bay for dinner, and then (of course) the Battlestar Galactica premiere. I'm looking forward to a day of self-indulgence; the next day, I'll be back to my refraining ways!

It is really kind of amazing how much support there is out in the world these days for cancer patients. First, there's the Wellness Community, where I've attended support groups since my diagnosis. They also offer all kinds of classes in yoga, visualization, nutrition, and other mind-body boosts, and all of it is free to cancer patients and their families. Now that I'm almost through treatment, I've been interested in getting back to physical condition, and it turns out there are more great (and free) programs for that, too. Spectrum health clubs offers a "Cancer WellFit" program that gives a 10-week class to help us get back into shape. I start mine on October 16. There's also an organization called Team Survivor that provides group exercise classes--even triathlon training!--to recovering patients. And yes, it's free.

Finally, it is Breast Cancer Awareness Month. I'm certainly aware of breast cancer, and I assume anyone reading here is, too. Of course I want all the women I know to do the self exams and the mammograms and yada yada yada. But also watch your weight (huge risk factor!) and enjoy your life every day (not a risk factor, but something we can fail to do until a calamity knocks us on our ass). I hope everyone can keep their awareness firmly anchored in the 3rd-person perspective.

Photo Monday! -- Diet update

2006-10-02T20:13:00.000-07:00

How's the diet going? See for yourself.

Photo credits, as always: Noah

Photo Monday! -- Hair Watch 2006

2006-10-02T20:02:00.000-07:00

As promised. My hair is growing WAAAAAAAY more slowly than I hoped or expected. Tomorrow makes 9 weeks since the end of chemo (yay), and as of today I still look bald, albeit with 5 o'clock shadow. It's progress, but not arrival. My new goal is to be able to go "topless" by November. Please send all your hairy thoughts my way.

Here's the head today: And the last time:

And just to acknowledge growth where it exists...here's a closeup shot of my eye, where you can see that eyebrow and lashes are actually looking like the real things. By the end of treatment, I had about three single lashes left on the upper lid of each eye, and none on the lower; and I've been down to maybe ten eyebrow hairs, total. Now I can even go easy on the eye pencil, so this really is progress:

End in sight

2006-09-30T19:47:00.000-07:00

I'm down to my last week of treatment. The last week of this 6-plus month journey is here. I've finished the main radiation treatment, and next Monday through Friday I'll have the "boost"--a beam more narrowly focused along my lumpectomy scar. I've developed some redness, though it's very mild, and fortunately next week's treatments will avoid the red areas. Hopefully I'll get out of this round of treatment with minimal scathing.

And as of Friday, October 6 at 11am--I will officially be Done With Treatment. I can move my magnet from the "cancer patient" column to "cancer survivor." I can hardly tell you how exciting that is. Noah and I will be taking the day to celebrate--meals with disregard to diet, blatant ignoring of work, and whatever fun activity we can muster.

And at 9pm--yes, perhaps I have odd priorities in my life--we'll get to see the 2-hour season premiere of Battlestar Galactica, my favorite favorite show. It went on summer hiatus back in March, around the time of my surgery, and I have been looking forward since then to this premiere--partly because I love the show, but partly because I expected all along that treatments would end about then. The confluence is gratifying.

Hair updates soon, I promise! And the diet is still going great--I'm almost 20 lbs down now.

Grumbles

2006-09-23T23:55:00.000-07:00

Two days after my last post, I went to the urgent care clinic in Manhattan Beach, and was diagnosed with a bacterial infection and given amoxicillin. I had to cancel my MBA classes for the first time ever when I could barely speak or walk on Tuesday. And I still have most of my symptoms today, Sunday, two days into Week 3 of the cold.

We'll post new hair pictures soon, because there is visible progress--although again, it's 7 weeks after chemo, and I thought I'd have a lot more hair by this time. Eyebrows and eyelashes are coming back well, though they're still stubby. Basically, I am making forward progress, but it is very, very frustrating how slowly that progress occurs--and how many steps backward I have to take on the way. The cold is a prime example. It really sucks to get so sick when I expected to be healthier and healthier.

I've heard many people say that things get harder after treatment ends, before everything gets easier. That is starting to make a lot of sense to me. I am still 2 weeks from the real end of treatment, but I want my life back NOW, and it doesn't work that way. Argh.

Quick update

2006-09-16T18:58:00.000-07:00

Things are going OK. I've finished my 3rd week of radiation, if you don't count the one day off for Labor Day (which has to be made up later), so I'm halfway to the end of that treatment. Yay. So far I seem to be responding fine, at least in terms of side effects. I have a little bit of redness, not exactly like a sunburn, but like a little mild pinkness from the first day of summer sun after turning pale all winter. No real itching, which is a common source of trouble (scratching leads to faster skin degradation). I bought a couple of non-underwire bras, due to the edict of the rad onc, but one of them is actually more irritating than my underwires. And I've had some heavy-sleepiness kind of fatigue, which I can't be sure I should blame on radiation. It generally hits after a long day of teaching and meetings, and may just be because of that. So, in general I am doing fine with regard to radiation.

In other ways, though...not so good. I got a cold 9 days ago, immediately after a wonderful massage. Massages often stir up toxins in the body and you get flu-like symptoms, and this was really minor at first. I didn't have to take much downtime and was able to teach and attend to my duties all week. But two days ago, Noah came down with it in much more serious form, and then last night I was hit with a real whammy. My temperature shot up to 101.8, and the rad onc had said I must call my regular oncologist if it was over 101. So, at 11pm, I was calling the after-hours line at USC for the doc on call. His verdict: it's a viral infection, not what they worry about for chemo/post-chemo patients. I should hydrate and keep pounding the Tylenol/Advil. Fortunately, overnight the fever broke. But Noah and I are both feeling just lousy today. Lots of sleeping and moping, and not a lot of moving. He struggled out the door late last night to get us more symptomatic relief (Nyquil, etc.), but today we both seem unable to do much. Thanks go to his dad, who's in town and who dropped off lunch (which will probably also be dinner--it was big).

I think this is not cancer-related, and not even particularly compromised-immune-system- related. It's interesting to be just "normally" sick again--and hard to avoid letting it take on bigger meaning. The hardest part is that we are both laid low at once, which means neither of us can do the caretaking for the other. I just hope that we both recover quickly (for me, that my body is strong enough to do so). Like I said, our lives today are all about the sleep and hydration. Will let you know how it goes.

Dream a little dream

2006-09-06T23:19:00.000-07:00

I'm not sure that the vaunted "positive attitude" is always a good thing--but occasionally, I am really comforted to realize just how positive my attitude seems to be.

In the last couple of months, I've had quite a few dreams that are clearly "about" my cancer experience. None of them is explicitly about cancer, or disease, at all. But the symbolism comes through loud and clear. Water has been a major symbol in all but one of the dreams. I thought I'd describe some of them here. Hey, after posting my bald head, why not lay bare my psyche as well? (Hair update, by the way: though it's barely visible, I have an even fuzz all over. We think the follicles are about to burst into bloom!)

Dream #1 (earliest): Noah and I were going to a wedding in Amsterdam and we were all dressed up. The only way to get to the wedding was to ride a "bike" that went not on land but on a water highway. I sat on the seat and pedaled; Noah rode on a running-board-like step just behind my seat. If I stopped pedaling or faltered, we would sink into the water and ruin our wedding clothes. Several times, people around us got submerged to our necks, and I was nervous the whole way; but we made it to the end of the water highway intact and dry.

Dream #2: I was performing in a circus show, and had to stand on a tiny platform up high in the air, supported by a single stilt. The platform kept swaying and buckling; I was terrified and kept moaning my fear to the other (unknown female) performer who was there with me. The circus ringleader shushed me, and forced me to stay there even as my panic mounted. I was sure something awful would happen--it was like my "chased by robbers" dreams, in which the robbers always catch me. But this time, after a period of terror, the show ended, and I was safely brought to the ground. (And then I went straight to the snack vendor for some bread...and this dream was before my diet!)

Dream #3: I was walking along a dock in a marina, and looking into the water, which was filled with menacing looking sea creatures--not sharks, but smaller, spiny things that were a lot more scary. All of a sudden I fell into the water, into the midst of all the terrifying creatures. I thrashed about and kept waiting for an attack, or to be eaten; but then I found steps to get out and escaped safely.

Dream #4 (just a few nights ago): I was in "Manhattan Beach" (looked nothing like the real thing), sunbathing and reading on a rocky outcropping at the coastline. The rocky area was just below an elevated pier complex with businesses. I was enjoying myself in a patio chair, when suddenly a huge wave came in and engulfed me; everything around me became ocean. I later realized it was a tsunami. I barely made it to the slope and up to the elevated area, above the inundation zone. I started back down to retrieve my stuff as the water began to recede, but everything was gone. I was very upset at losing not only my chair and book, but also something else that seemed terribly important, though I couldn't remember what it was. In the midst of my upset, though, I realized I had just survived a tsunami and was thrilled to be OK. I started walking uphill toward home. When I was almost there, I realized my keys had also washed away.

Though the last one had a late "gotcha," I'm really struck by how I always turn out OK in these dreams. I'm really hoping that my subconscious has a read on my overall health that's not accessible to the rest of me!

Diet milestone!

2006-09-01T23:56:00.000-07:00

Forgot to post about my 3-week check-in with the nutritional oncologist. I lost 10 pounds in my first 3 weeks! She and I were both very impressed--she kept saying "wow" as she looked at the numbers, and then as she went through my food diary. I felt like I was a little permissive in my interpretation of the diet at times (read: I cheated), but she felt I'd been very faithful to it. Yay.

So--a third of the way there in just 3 weeks. I'm sure the next 20 pounds will be tougher, but at least the goal is that much smaller now.

An interesting note--my nutritional oncologist, Rachel, is also the n.o. working with Sheryl Crow following her breast cancer. (Add that to my surgeon, who operated on Suzanne Somers--I don't think you can dodge the one-degree-of-celebrity-separation here.)

And finally, thanks and welcome to all the friends and family who have joined me, either doing my diet with me or giving up some kind of indulgence themselves. It is great to have the company and support! Let's all get healthy!!

Watching the grass grow

2006-09-01T23:30:00.000-07:00

So my hair should start growing back now. Any day now. Annnnnnnnny day.

They say growth starts about 3 to 6 weeks after chemo ends--that's some range! It's been 3 and a half weeks, and if you run your hand over my head, you can feel that it's rough, but not really hairy. Maybe it's like the 5 o'clock shadow of a teenage boy whose beard hasn't fully arrived yet.

Last night I had a great dream. I dreamt that one afternoon I reached up to my head and found hair! It was very dark brown, and curly, and about chin length. I didn't know it was there, but suddenly I was running my fingers through my own hair. Excited, I began telling people how I awoke that morning with beard-like stubble, but during the day my hair had grown out that much. It was quite wonderful. Now, today, I feel so dissatisfied, wanting that to be true.

A month or so ago, in my support group, a woman who'd just finished chemo complained of her own frustration with wanting to be all better, now, against the reality that getting better was a slow process. I sympathized at the time, but I didn't understand. Now I do.

Meanwhile, I am going to start the new Hair Watch 2006. In May, it was a hairloss watch. Now, it's a hair growth watch. It takes a lot for me to do this, but I am going to post photos of my progress (from the back--I do have limits). So here's the first one, taken last Saturday, at zero growth. When there are notable changes, the HW will be updated.

Newly-busy days

2006-08-30T21:47:00.000-07:00

So much going on! I just wanted to file a quick update here--not as verbose as usual, I hope.

First, I started teaching last week. It's nice to be back in the classroom, actually--reassures me that I can return to My Life, and not be stuck in the life that hijacked me almost 6 months ago. My first day was rough--I have two back-to-back 3-hour sessions on Tuesdays. In the first, I forgot to conserve energy, and went bouncing around the room the way I usually do. About 2 hours in, I was hit with chemo-style fatigue and wondered how I'd make it through the rest. In the second class, I sat on a chair almost the entire time. I told both classes about my health--the first, so we could arrange a plan for any time radiation might make me late for class, and the second, to explain why I sat on my ass the whole time. Interestingly, this week a student came to me to talk about breast cancer (usually it's to ask for job negotiation advice). His mom was just diagnosed and he wanted some reassurance, I think, and some tips for her.

Second, in the few days before radiation started, we squeezed in a quick trip to Yosemite. That, too, was a good return to life. I actually did all of the following in three days: a 2-hour horseback ride, a 2-mile hike (mostly downhill), and a 12-mile bike ride. In the past, this would not have been an especially active getaway for us, but I feel an enormous sense of accomplishment now. Now I just have to keep up the exercise! We got my bike tuned up before the trip, so it's ready to go.

Third, I started radiation on Monday. It is going fine. There are no side effects right away--those don't usually appear until the 2nd or 3rd week, apparently. It really is painless--a bit like sitting on the slide of a giant microscope that buzzes for about 45 seconds. If you're not smashed on the slide, you can imagine, that wouldn't feel like anything. Anyway, I am showering with Ivory soap and deodorizing with Tom's of Maine for the next 6 weeks, and I have an appetizingly-named cream to apply--it's called RadiaGel. Mmmmm.

Finally, since my diet has garnered lots of sympathy and support (thanks so much for that!!!), I'll let you know that I've made it through my first 3 weeks pretty well. At Yosemite, I sometimes had few good options, and I had three meals on our trip that I consider really cheating (fried [!] fish at one, scrambled eggs and waffles at another, a Quizno's sandwich at the third). Otherwise, it was not TOO hard to ask for my fish cooked without any oil or butter, and my vegetables steamed, and extra veggies instead of the rice. So it's worked out, and I've lost at least 5 pounds (maybe more, but that's using different scales, so who knows). I check in tomorrow and we'll see how it continues.

OK, that's it for now. Thanks for checking in. I don't feel "done" with all of this yet and I do appreciate the ongoing support, so much.

The new chapters open

2006-08-19T21:43:00.000-07:00

It would be nice if ending chemo meant ending treatment altogether; ending the "cancer experience" and moving on with life. Alas, it is not so.

The final phases begin now. Radiation will start August 28 and last for 6 weeks; my nutritional intervention--let's call it that for now--started nine days ago and could last for months, if not years.

We went to the radiation oncologist ("rad onc" in oncology ingroup-speak) yesterday. The good news, since radiation treatments are 5 days a week during the 6-week period, is that I will go to a hospital in the South Bay, just 15 minutes away, rather than to USC. On the other hand, I was diagnosed and have gotten all of my treatments to date at USC. I feel an odd sense of dependence on that facility, and I feel uncertain and hesitant about going somewhere else. At the beginning, Noah and I weren't sure we would build a good rapport with the medical oncologist, Christy. In the end, I feel that Christy--along with Michelle and Lilia, the great nurses, and even Dean, who drew my blood perfectly week after week--was enormously caring, and we developed personal relationships and a strong sense of bonding.

The rad onc--an older male physician who did not invite me to call him by his first name, but for the sake of relative anonymity here I'll call him "Tom"--had a meeting to get to, and had a specific order in which he covered issues and gave his spiel, and questions were put off until their appropriate place in the spiel. He was professional but distant, and I won't see that much of him anyway. "Doctor days" are on Tuesdays, so I will see him on that day each week. (As for the fact that that's my long teaching day and thus the worst possible day in which to try to force in another appointment--too bad.) Most of this is psychological--Tom was recommended by my own providers at USC--and I am confident that I will receive top-notch care. But it's a difficult transition. When you are putting faith in people to save your life, I think you develop a bit of bias about them, and it's hard to feel like anyone else could possibly measure up.

So...radiation. The procedure itself is totally painless and quick. I go in Monday for a set-up appointment, where after numerous x-rays and CAT scans and lying with my arm over my head, the physicists will map out the correct angles for the machine to shoot radiation beams through my breast without hitting my heart or much lung. I'll get 2 to 6 tiny blue-dot tattoos in a square configuration to mark where the machine will line up. And I'll get instructions like, don't use deodorant (Tom's of Maine is OK), don't use talc, do use lots of this particular special moisturizer.

When I go in for each daily appointment, I'll lie back in exactly the same position (they use a foam mold to hold my arm in place, and the blue dots for alignment) while the technician spends about 5 minutes getting all the machinery set. Then, for about 2 minutes, the shooting of beams. That's it. This facility is apparently pretty good about getting people in and out, so overall there may be little impact on my days. Of course, it looks like I'll have to go in in the morning, and anyone who knows me knows that's a problem. For 6 weeks, 5 days a week, getting up early? Yikes.

The side effects are supposed to be fairly minimal, but so far every woman I know who's had radiation (there are several in my support group) reports at least some degree of burning. One had 3rd-degree burns. Seriously. Forgive a graphic moment--she had blood and pus oozing out of the area being radiated, and had to apply burn dressings all the time. They didn't stop or delay treatments, either--just kept going, and kept burning her.

No one else has reported anything as dire. In general, radiation seems to produce a sunburn by about week 3, and it gets progressively worse until a couple weeks after the end. Constant moisturizing and vigilance against scratching (which will be hard for me) are apparently key to minimizing trouble. I've gotten advice to wear very soft shirts and to eschew underwire bras--I don't think I've ever seen a bra in my size without an underwire, but they apparently exist--and to apply cortisone cream for the itching. Though fatigue is a standard side effect of radiation, "they" say that it's minor compared to chemo, and that post-chemo patients still just report feeling better and better as chemo recedes into the past.

So radiation will occupy my next 7 weeks; even longer than that will be The Diet. Way back when I got my 2nd oncology opinion, the doctor (very prominent nationally) recommended that I eventually work with the "nutritional oncologist" at her practice, who was part of a large multi-site study of nutrition and breast cancer treatment. If I have my numbers right, the study found that women on a very low-fat diet during or after their BC treatment were able to reduce their risk of recurrence by an average of 24%. For women whose tumors were not sensitive to estrogen--like me--risk was reduced by an average of 42%. All of this implies that my own risk of recurrence, 20%, could be lowered to something like 12-16% by following a similar low-fat diet.

I saw the nutritionist, Rachel, last week, and she gave me an even stricter diet. She has ordered me to lose 30 pounds right off the bat, since being overweight is also a risk factor in recurrence. (Presumably my weight was part of the algorithm for predicting the 20% risk, so losing weight by itself--without the low-fat diet--should push my risk below the 12-16%.) In addition, eating 20-30 grams of fiber per day also lowers risk beyond the low-fat diet. So I have no idea what my new number might be, but following Rachel's orders should really cut that 20% down substantially.

And that is something I have to keep reminding myself, because the diet is draconian. It basically involves protein (fish/tofu) and lots of vegetables, with a fiber cereal thrown in for breakfast--all in pretty tiny amounts. I don't know the caloric total, but it's got to be damn low. All foods are supposed to be as close to nature as possible, virtually no processing. Nonfat substitutes are verboten because they rely on chemicals. Green tea is a prominent feature. Though many of these characteristics are quite positive, a) it's a ton of work to eat without relying on processed foods, and b) I haven't been so hungry for so long in years.

It's odd to diet because my life depends on it. I'm used to diets being about appearance. I'm constantly tempted to throw the diet out the window and just eat, dammit, like usual. It's probably no surprise that I love food and that appearance has rarely been enough of a motivator to keep me from eating what I want. (The only exception in my life was my wedding--I did diet, and successfully, for that. And then on my honeymoon I started eating everything again.) But this time, my only motivation is to be sure that, at all the 3-month and then 6-month checks awaiting me in the next 5 years, I keep hearing "all clear," every single time. It's to be sure that I don't get another tumor in the same breast, which means mastectomy next time. It's to be sure that I don't get a tumor in the other breast, which means I do this all over again, or a metastasis somewhere else, which means I will probably die of breast cancer and be on chemo until the bitter end.

None of this makes it easier to endure the yawning pit in my stomach, or to watch Noah eat sandwiches or soy dream with chocolate syrup. But it is motivating. It's enough to keep me from rationalizing "just one" indulgence, all the fifty times a day that I'm tempted to take one. And more good news--the indigestion that plagued me during chemo has all but disappeared since I started eating this way.

Still, in some ways, this diet thing has felt harder for both me and Noah than the rest of the treatments. Those had a time boundary. This--well, losing 30 pounds will take a long time (though I'm somewhere between 4 and 6 down already, which is pretty fast). And once the weight loss is over, I still have to eat ultra lowfat indefinitely. It's just one of the ways in which cancer has changed my life permanently. Of course, I could make different choices, but I choose more life (thanks, Tony Kushner). And so add this to the list of things to remind me that there was my life before cancer, and my life after diagnosis, and they are not the same, and I don't ever, ever get to go back.

Anyway, treatment goes on. We've passed the worst suffering, I think, and I'm on the watch for hair to come sprouting from my head again, and that will be a happy occurrence. But I'm not done yet--this damn disease takes lives over for a long, long time, and I'm still in its clutches.

Oh, happy day!

2006-08-08T21:46:00.000-07:00

I am done with chemo!!!!

We went in today for my last treatment. Let me say that again: LAST treatment.

Of course, it couldn't be a smooth day. Just as we were headed out the door, I noticed a bunch of shredded stuff in the backyard. This is not unusual--Kibble likes nothing more than to find tissues or something similar, and to tear them to shreds. So I went to take a look. And it wasn't a tissue. It was an ant trap.

The ant trap being a product that poisons a kind of animal.

We called the vet, and the manager told us we'd better bring him right in, along with the box. So we stared at each other, as the clock ticked quickly past when we had to leave in order to be on time. Without much idea of how to handle things, we dispatched Noah to the vet with Kibble, and I picked up the phone to call the oncology nurse and explore ways to let me drive myself home after chemo. (Usually, the benadryl dopes me up so much that it's impossible.)

Fortunately, while I was dialing, a call came in on the home phone from the vet's office. The manager had jumped the gun. Ant baits are not generally dangerous in small quantities, except that dogs can ingest bits of plastic that might obstruct the intestines. We could call the company to confirm this, keep him home, and observe him. Because my very generous friend Maia was lined up to come sit with Kibble for a few hours that day anyway, we were saved. Kibble could stay home, Maia could keep him under observation, and Noah and I could both go to chemo.

That's what happened. We left a half-hour late, which stretched a bit longer with some needed stops at the post office and bank. Once we got to USC, it was actually good. For once, we were just ushered through every step of the day without more than a 10-minute wait in between.

The blood draw was smooth, even if the receptionist teased me about still being too scared to look at the needle. It's true--the blood-draw sticks don't hurt that much now, but I do not want to see that needle puncture my skin. Just too yuck.

I had my last appointment (for 3 months) with Christy, my oncologist, and Michelle, the fabulous oncology nurse at the breast center. We talked through my symptoms for the past two weeks (bone pain, some abdominal pain, reflux, weak skin, numb soles of feet, almost all my eyelashes gone and eyebrows rapidly following--all quite normal, she said). They provided me a referral to a radiation oncologist down here in the South Bay, so I can do my 5 days a week closer to home. There was much commiserating about Kibble's ordeal, and showing of dog pictures--with Michelle, that is; not Christy, who heard our story and immediately wondered why the heck people bother to have pets.

Thanks to our terrifically fun trip to SF this past week with Sarah and Tom, my sister- and brother-in-law, I had really exhausted myself before this chemo and seem to be getting a slight chest cold. I was worried that this might keep me from getting my last treatment today, but both Christy and Michelle reassured me--if that's the right word--that Christy is "very aggressive" and doesn't delay chemo unless the person has a raging fever or is undergoing surgery. So just a few minutes after that appointment, Lilia came to escort us to the day hospital where I get my chemo.

I was one of only three patients, so I got to pick one of the best chairs. What makes a good chemo chair? Lots of space around it; being in a corner of the room with two contiguous solid walls (not dividers, which can get bumped); a set-up that makes it easy to reach my left arm (only myleft arm can get chemo, because they removed lymph nodes on the right) and allows Noah to sit on the right side or nearby in another chemo chair (chemo chairs are comfortable recliners, whereas the guest chairs are regular, uncomfortable chairs for sitting only); and good air circulation. I think today I got the 2nd best chair in the day hospital. Nice way to go out.

We had a little hiccup with the catheter insertion. Because my hand really hurt the last time she tried to use it, Lilia had switched to my forearm. But she couldn't get the catheter into the vein, even after some poking around for it. She felt really bad--she's so nice about it, and despite this issue, she's very good at inserting IVs. We switched back to my hand, and she got it right away, so no problem.

The Taxol drip got started at around 4pm; though Lilia was off at about that time, she stayed until close to 5, chatting with me about her wedding and making sure all was OK. When it was time for her to leave, we gave her a card with a couple of gift cards for her honeymoon in January. Nothing big! We tried to stay small so as to comply with any rules about gifts for hospital personnel, but wanted to do something toward her plans, after she has done so much for me.

The drip went on without incident until about 7pm, and then the late nurse came to remove the catheter from my hand. It bled more than usual, but I didn't care. I was DONE. Noah gave me a high five as the catheter came out, and then a big hug when I stood up. My face wedged itself into a huge, immovable smile. I felt a sense of joy and hopefulness that I've felt on few occasions, such as when I got my postdoc after taking a huge gamble and turning down another, sure-thing job, or when Noah, Kody, and I finally reached the bottom of a terrifying mountain scree-pile descent in Colorado which I was not at all sure we would survive.

And what's great is, I don't even have to go back tomorrow for the Neulasta shot that boosts my white cell counts. Because we are not trying to rush my blood counts back to normal in a short, two-week window, they can take the usual 3 weeks to recover fully; plus, my blood counts have been really good all along. So I am really done with chemo. No more procedures remain. Close that chapter.

My hair will start to grow back in about 3 weeks, I will start feeling better and keep getting better after a week or two, and all my crazy symptoms like numb, blistered feet will go away. Christy says I won't be fully normal for as much as a year, but I'll see steady improvement throughout that time. I will be meeting with a nutritional oncologist on Thursday, and now that I don't have chemo to ruin my associations with any new eating habits, I plan to start eating in a way that promotes my survival, and increasing my exercise. I can cut my 20% risk of recurrence to about 16% if I take diet and exercise seriously--and I feel I must.

So next...next I have radiation, which should be a piece of cake next to this. One woman in my support group had really terrible horrific burns, but I feel confident I'll escape that, mostly because she was on chemo at the same time (very rare). With my foot blisters, I see how body skin becomes weaker, and healing is much slower during chemo. Also, she had a full mastectomy, not a lumpectomy like me, and they had to aim the beam directly at her body. She got 'sunburned' on her back from where the radiation went through. I am hoping that the angle of radiation for me can be directed away from my torso. Well, we shall soon see. In any case, I've been told that there is fatigue associated with radiation, but it is minor compared to that from chemo--in fact, it's a function of having to go 5 days a week for 6 weeks as much as of the effects of the beam itself. And some women do not get any sunburn at all. More on radiation as it approaches. I should have my first appointment very soon, and then start treatments in about 3 weeks. If we have the schedule right, I would start on August 28 and finish on October 6. Sounds quite bearable.

After all, chemo is DONE! Did I mention that?? :-)

"Good" cancer?

2006-07-23T16:32:00.000-07:00

I keep meaning to write about the title of this blog. There are lots of people--lots of doctors--who will say there is no such thing as a "good" cancer. This is a terrible disease and you just really do not want to hear that diagnosis, ever. On the other hand, we can certainly differentiate between a thyroid cancer, which can often mean a bit of treatment and then you go on with your life; and liver or pancreatic cancers, which tend to mean that you will be fighting hard with aggressive treatments for a few months, after which it is possible you may not even be here anymore.

When I was diagnosed with my Stage II-A breast cancer, part of the doctor's first sentence was, "...and we're gonna cure you." That word, cure, stood out prominently. It was wonderfully reassuring, especially coupled with my longstanding sense that breast cancer was a "treat-and-go-on" diagnosis. In the past, I had taken note of famous women who had it, but always those who survived. Betty Ford. Melissa Etheridge. Olivia Newton-John. Jill Eikenberry (who was my age when diagnosed). I always felt like we heard that these women had breast cancer, and then they were treated, and then they stayed around--in many cases, for decade after decade. My own aunt had it and recovered. Because of all this, breast cancer seemed like a mild setback, and I was relatively optimistic.

But it's really all about your perspective. A woman in my support group was devastated by her diagnosis (she's close to my age, and her cancer is not much worse than mine) because she had known several women in her life who had breast cancer, and virtually all of them died. She felt she'd been given a death sentence. And indeed, the bad news starts pouring out once you are paying attention. Linda McCartney, novelist Carol Shields, Wendie Jo Sperber, and Columbian singer Soraya are only a few of the famous who recently died of their breast cancer--the latter two, quite young. I have heard plenty of stories, now, of recurrences and metastasis, and when I found that my own risk of that was 20% even after chemo, I felt a lot of my optimism grow dark.

At this point, the optimism and the darkness take turns dominating my views. But overall, I'm glad I chose this title. I very much hope that the 80% chance that I have no recurrence prevails; I am grateful that I don't have one of the far more serious and worrisome cancers that send people to the Wellness Community support groups on the same night as mine. It is awfully easy to come across information that is terrifying, and to focus on the dangers that might lie ahead. I like having the constant reminder that I once thought of this as a pretty easy thing, and that the odds tell me that, in fact, it really might be.

Taxol Dayz

2006-07-09T16:59:00.000-07:00

Hi folks. I'm happy to report that my relatively long silence reflects a more positive chemo experience. After finishing my 4 cycles of AC (why do they call them "cycles"? I have no idea), I was switched to a drug called a "taxane," which is another of the "big guns" that are directed against more daunting tumors, such as mine. I'm now on Taxol for 4 cycles (1 down, 3 to go--the next is on Tuesday). And I'll take Taxol over AC any day.

The bad news is, I am one of the substantial minority of people who are allergic to Taxol. I've described my reaction before so I'll spare you that again, but now I can look forward to a jumbo dose of Benadryl every time I go in for chemo. (That, coupled with the Ativan they have lined up for the increasing anxiety I feel every time, pretty much renders me a semi-conscious rag doll.) After dose 1, for the first couple of days, everything felt pretty normal. Then on Thursday, I started having aches and pains. Initially, it felt like I'd played some hard hours of volleyball for a few days; my muscles were sore and my bones felt like they'd been used as battering rams. After a while, the pain got more intense.

I just lived with it for about 24 hours, but after a very sleepless night Thursday, and several hours of strong waves of pain on Friday, I called the oncology staff. A few hours later, I downed my first Vicodin, which took the edge off but didn't bring me below the "bearable" threshold. After that, I upped the dose to two Vicodin, and that pretty much wiped out the pain. Two days of constant Vicodin (with accompanying wooziness and inability to drive), one day of sporadic half-doses, and then the pain mostly went away. With no nausea and no other major side effects (a little--very little--indigestion was the only one remaining), I actually started to feel almost normal! True, my energy is still way below par. But being on Taxol--so far--has really been so much better. Even my brain is working a bit better.

In the past week, we've celebrated the 4th of July and our 6th wedding anniversary (on the 8th). Of course, the meaning of "celebrate" is different this year. In our lives B. C. (before cancer), we would probably have gone out of town somewhere for the whole stretch, and engaged in some fun activities (hiking in Yosemite; kayaking and snorkeling at Catalina Island). At the very least, we'd both have played volleyball at the beach or some such active pursuit. Now, I don't think I could last 10 minutes playing volleyball in the sand; my half-hour walks are taxing, and if I try to do too much during a day I just get wiped out--usually in an instant, when I don't expect it.

So on the 4th we had to be contented with fireworks and dinner--not bad, really. The Redondo Beach fireworks, launched from a barge just off the pier, were so close to our house that we walked down to the edge of the marina with Kibble and watched the display over all the tethered boats. It was quite charming and uncrowded, and Kibble didn't show any fear of the explosions--in fact, he didn't seem to care at all, which was great.

I'd prepared burgers, asparagus, and goat-cheese scalloped potatoes, but when Noah went to light the grill and make the burgers, he discovered that our gas tank was empty. So we packed up the food for the next day, and went to the Manhattan Beach Brewery for a late dinner.

Yesterday, for our anniversary, we had dinner with friends Paul and Leanne, who live out in the Valley (but--lucky for them, not for us--are moving back home to British Columbia in the next few months), and Maia. Kibble got to come again, and frolic in the backyard with Paul and Leanne's golden retriever puppy, Brodie. It was a very pleasant evening, and good to spend our anniversary with other people--just as we spent our wedding day.

My mom comes out to visit on Wednesday, for a week. My dad was here just a few weeks ago, too, and a week after my mom's departure, Noah's sister Sarah and her husband Tom will be here. Through the time that remains, for chemo #6 I get a visit from mom, for chemo #7 we get a visit from Sarah and Tom (with a quick trip to SF thrown in), and then I will only have one last treatment before I am done. That light at the far end of the tunnel is getting bigger and brighter, and thanks to the Taxol I feel like I'm picking up speed.

The meaning of life

2006-07-02T12:40:00.000-07:00

Having cancer is like coming to a roadblock with a flashing sign that says “mortality.” Although I should get through this and be fine, nonetheless my life expectancy has taken a hit, and my chances of developing metastatic cancer have gone from less than 1% to 20%. So I have to start thinking about what I want from my life, knowing that I can’t be as comfortable as most people that I have years and years and easy years stretched out in front of me.

Let’s say that I only have 5 more years to live (who knows?). How do I want to live them? Well, two answers: I want to be sure I don’t take for granted the people in my life, and I want to be sure I can say, at the end, “I lived as fully as I could.”

It’s an awkward time to be facing this question. I’m halfway through the trek to tenure, and this is the time when most people at my stage forego having lives to invest in their careers. It’s hard to get tenure without that single-minded devotion, and I could live for another 40 years or more, and if so I will want to establish a solid career. But if I died in 5 years, and all I’d done with my time was sit in front of the computer—well, that would be fodder for regret!

What’s interesting about this, to me, is that this is the calculus that we should all engage in anyway. Having cancer has changed my odds, but it hasn’t touched the fundamental uncertainty that we all have about how long our lives will last, nor the truth that any of us could die, for any number of reasons, at any time. My tenure clock answer today—which should be the exact same answer that I gave last year—is that I will work hard, and strive, and believe that there is a future in which I’ll be well served by seeking tenure. I’ll spend a substantial amount of time working (and thank the stars that I’ve chosen work I find enriching and inherently rewarding). But I’ll also take time off, I won’t kill myself on projects I find soulless, I’ll play volleyball and go on vacations and read books for pleasure. And, with resolution #1 in mind, I’ll spend plenty of my time with people I enjoy—in the past, this was the first to go, when I had “work to do.” Now that response can’t be so knee-jerk.

Everyone faces the same conundrum, really—it’s just staring me down with a bit more intensity. To what extent do we live for the future, and to what extent do we live for today? In fact, we have to do both. It may suck to be reminded of that—but at least I have plenty of time to do something with the reminder.

Nurses really matter.

2006-06-27T21:37:00.000-07:00

The nurses matter because, after the doctor writes her orders, they are sent over to nurses who actually do everything. The nurse assigned to you for the day will be the one to find a vein, to stick a catheter into that vein, to sit and push toxic chemicals through the catheter into the vein, to check on you to be sure your arm is not swelling or reddening and your face isn't flushing. She'll talk to you and comfort you and explain all the side effects and then, later, take out the catheter and wrap up your hand so it doesn't bleed, and send you home.

The good ones get the needle stick on the first try.
The bad ones moan about your inconvenient veins and muddle around a bit under your skin...with a sharp object.

The good ones know that all the fluids, both hazardous and harmless, can hurt going in. So they set saline drips to be relatively slow, and sit with you to push ver-r-r-r-r-ry slowly, by hand, anything that is a real problem.
The bad ones have somewhere else to be, and just shove that plunger down quickly.

The good ones think about how your arm should be placed on its pillow, how the lines are draped (to stay out of our way); they place their warm hands, for heat, on your forearm when the chemicals are stinging.
The bad ones figure you can do all that yourself.

The good ones remember, week to week, that you are afraid of needles and don't like to watch that catheter being inserted. They remember that you don't want a warning, thanks--just stick it in while you look at the opposite wall. They notice when your anxiety is getting worse each time, and making your stomach upset for no other reason, and they recommend Atavan to help out, and then contact the oncology staff to get it prescribed. And then they give you a whole pill.
The bad ones don't notice any of this stuff, although they'll let you look away during the needle sticks.

The good ones stand there with nothing else to do, really, for 15 minutes to watch you and ask you questions when you get a new drug. Do you feel funny? Any changes? When you report that yes, on this new drug Taxol you are experiencing a tightening in your chest (harder to breathe) and these bizarre, spasmodic, pulsing pains in your lower back, she runs to the pharmacy and bangs on the window to get your Benadryl, and then slowly, slowly, pushes it into the saline drip (having turned off the Taxol for a while) and soothes you as the symptoms subside. She lingers more, waits to be sure you feel okay. When she restarts the Taxol (because that's what they do--no one is deterred by a little allergic reaction), she watches carefully again, asks all the questions, smiles at how groggy you're getting thanks to Atavan and a huge dose of IV Benadryl, doesn't leave until you have taken in 25cc's and it's clear you'll be OK this time.

The good ones are off shortly after 4, but say they can stay until 5 today (since your allergy problems didn't even resolve until after 4:15) so they can keep checking. They make sure to hand off smoothly to the nurse who will stay late, until almost 8pm, since your drip is 3 hours long and has to go slowly at first.

The good ones smile and laugh, tell you funny stories about movies they went to and happy stories about their upcomming weddings. They answer all questions with confidence. They have their share of complaints about the hospital's current bureaucratic admin changes, but they focus on the positive: "Change is always hard; we'll just learn it and we'll be fine." They tell stories of their own families' cancer histories, or their own; they talk about their years of experience giving chemotherapy, and why they do it, and the best ones have pet peeves that involve shirking on quality patient care, so you know you're in good hands.

Today's nurse, Lilia, who is the best nurse and whom I request, now (having learned my lesson), every time--told another story of a patient who was rude to her, who dropped her newspaper and told the doctor, as he bent to pick it up, "Don't worry--the girl will get it." She meant Lilia, who heard it and got all her ire raised. What a fool was this woman. She is still coming in to USC, and now the very best oncology nurse there--the one who can make sure you don't hurt, when let me tell you, other nurses make you hurt--doesn't like her. What a stupid and avoidable mistake.

The nurses make all the difference. Lilia stands between me and repeated pain. I feel so lucky to have found her (on my first day of chemo!) and so smart to continue requesting her. I hope she is paid extremely well, and I'm sure she's not. But she'll be able to look back on her life, and say honestly and deservedly, "I lived well, I did something important, I made a difference."

Aloxi is my friend

2006-06-18T14:55:00.000-07:00

It's not like I've felt as "good" as in the first two cycles, but we've managed to avoid the horror of the third cycle, and I'm sure it's thanks to Aloxi, the new anti-nausea drug. Well, that and the acu-stimulant wristband that Rick and Joanie sent me (thanks, guys!!), which got me through a couple of days when I think I'd have had the nausea otherwise.

Supposedly, I get to actually get better now--I'm done with AC, and the Taxol is not supposed to cause nausea. So I am looking forward to a positive trajectory. It's amazing how much hope that provides.

Finished with AC!

2006-06-14T21:04:00.000-07:00

Well, I am halfway done with chemo.

YAY!!!!!

I had my last AC treatment yesterday, and since the next drug (Taxol) is not supposed to cause nausea, it is really a positive to make this transition. Not to mention that the number of remaining treatments will become smaller than the number completed--definitely good for the psyche.

When I reported on my tough experience last time, my oncologist decided to switch my pre-chemo anti-nausea drip to a new one called Aloxie (sp??). So far, that one seems to be working pretty well. Of course, it usually takes a day or two for misery to kick in, but I'm in less need of my nausea pills this time. Crossing fingers.

But seriously...halfway done. Finished with AC. Those are happy things.

Feeling better

2006-06-08T00:16:00.000-07:00

Just a quick note to say that finally, a week after chemo, I feel a bit better. Was able to leave the house for short jaunts on Monday and Tuesday; today I even went to school, to pick up some stuff at the office. That has become a noteworthy event! We got some new lounge chairs, so I can sit outside on a nice day (slathered in sunscreen, of course--chemo causes sun sensitivity). And as of Monday, I can eat with some normalcy again, too.

Over the weekend, my eating was really weird. One day, I could hardly stand drinking anything. I sent Noah to the store for apples and watermelon, then juiced the apples and made watermelon agua fresca. Those, I could drink. On Sunday, I couldn't manage to eat anything, but suddenly thought I might be able to stomach some potato salad. So Noah's off to Vons again (he is making lots of trips there--good thing it's only a few blocks away) and I managed about 1/3 of a package of that. It's quite an interesting diet. I usually love tropical iced tea, and now can barely stand the smell of it (or garlic--though that flavor is fine). All kinds of weird quirks.

Anyway, I have had enough energy since Monday to resume more normal activity, and each day has been a little better. Thank goodness next week is the last AC. At least I won't have the nausea to worry about after that. Meanwhile, I am enjoying being able to use my brain and my body for the next 5 days.

All in my head

2006-06-04T13:25:00.000-07:00

Devil: This time around has sucked. Sucked. It's Sunday and I still feel "not right"--yesterday was so bad that I could barely move off the couch and couldn't take my daily walk. There's some nausea (for which, stupidly, I forgot to take any pills until Noah reminded me at night of that possibility--and the pill helped). There's major fatigue--on my Friday walk, I felt exhausted about 2 minutes before I got back home, and just never bounced back from that. The Neulasta causes bone aches, and sitting on the couch--about all I can do--leads to aches and discomfort. Overall, it's just very not right.

Angel: But really, it's still not as bad as one might expect. I'm not throwing up. I'm not literally unable to get out of bed. As bad as I ever feel, I keep thinking I'm just overblowing it (I've always been a wimp about even the most minor illness). It's probably a whole lot worse for other people.

Devil: It's boring, frustrating, even depressing to have to sit around and not be able to do anything. Noah tries to cheer me up, encourage me to get out and do things...I pushed myself hard to walk two days, but then just couldn't do it. I don't want to talk, so there's not much he can do for me. My eyes hurt, so reading is tough and even TV gets difficult. It's hard to find a sitting position that keeps my stomach calm. I want to think, to write, to work, to read, to move, to be active--to do anything.

Angel: Once Noah realized that I couldn't go out for diversion, he really stepped up to bring diversion to me. He's made lots of little trips to the store, has played Battleship with me (no eye strain, no energy needed), tells me stories when I want them and is quiet when I want that.

Devil: Just thinking of chemo now makes me feel physically ill. If I picture the IV, or the day hospital, or any aspect of it (including writing this), my stomach lurches and I feel horrible. It's starting to make the thought of going become dreadful--literally. This is a more difficult challenge to my self-discipline than I've maybe ever faced. It's not that the experience itself is so bad, but the thought of it is becoming terrible. It really is so much in my head.

Angel: The chemo is giving me a 23% better chance (in absolute terms) of avoiding any recurrence of the cancer for 10 years. If it's working, it's killing off any dangerous little cells that are still left. If I can focus on my breathing, I can keep from plunging into the darker thoughts of chemo, and keep those ill feelings at bay.

Devil: At the start of chemo, I felt great. Perfectly healthy. The tumor had been removed, my mobility was pretty much back, and I felt really normal. Now I feel like a Sick Person. I'm sedentary and limited and yucky-feeling, and (since I haven't really announced this yet) I have basically no hair. I have days of feeling better and almost normal, but even on my best days now I get more tired, sleep a lot more, feel I can do less. Before starting chemo, I read a piece by a woman just finishing hers, and she said she gazed in the mirror with an old picture in her hand--herself with hair, smiling and healthy--and wondered who she was. That seemed so remote--even in my darkest days, I thought, I'll remember who I am. But who I am today is such a shell.

Angel: And yet I do remember this always: I am not really sick. I'm being given drugs that make me feel lousy, but these are just drug side effects. And the drugs are prophylactic: they are not treating a current illness (the tumor is gone!) but are the sacrifice I am making for four months in hopes that I have years and years and years in which I don't have to worry about this anymore. If someone could tell me for sure, in three years you would be dealing with a recurrence, but if you choose to go through this now, it won't happen--then absolutely, I would choose this. And I have chosen this, even without the certain forecast. It is really hard. But I chose it for a reason. So I'll stick with it, and I'll make it through.

It's been a while

2006-06-01T17:12:00.000-07:00

Hello folks.

I'm pleased to say that one reason for my silence this past week was that I got to have some fun. Noah and I went up to Oakland for his brother Sam's "wedding" (we're not supposed to say that, but it's still the best descriptor). We flew up on Thursday and stayed until Tuesday. We made it to a couple of favorite SF restaurants (and a couple of others in the East Bay), and though almost all of our time was spent in family events, we got to see a bit of our old stomping grounds. The visit was fun anyway, and I enjoyed seeing the whole large, loud, loose, loving Markewich clan.

We flew back on Tuesday just in time for chemo. I did not want to go. In fact, I was writing a blog entry in my head the night before, and it went like this:

No, no, no, no. Don't make me go. I don't want to, I don't want to.
Fine.
This just better f***king be working.

Nice, huh? But quite true to my state of mind. The physical side effects, as it turns out, are not so bad for me--but mentally it is really rough. Just knowing that there are these toxic fluids being put into me, and that I'll feel even a little bad, is difficult. At this point in the cycle, I feel rotten just because of the thought of chemo, even more than from the chemo itself.

At least I have only one more AC treatment (that is the one that causes nausea) and then I'm on to Taxol, which has its own problems--but they do not include nausea, and somehow that seems worse than the others to me. I don't like feeling nauseated, and I associate nausea with mental stress, so it's even worse. And after the next treatment I'll be halfway done, so that's a positive too.

Meanwhile, I actually feel a little better this time than last. I have been more vigilant about taking the anti-nausea drugs, which seems to be helping, and I have a little more energy. Usually Thursdays after chemo mean I lie on the couch all day, but today I made some food and went on a walk--both real accomplishments!--and even got some work done, which was also nice.

But having done all that--I'm a little tired now. It's a lovely afternoon here, on a day that's been in the mid-70s, and Noah's about to go to volleyball. I think I'll relax and stop typing. More later.

At least it's a "good" cancer

Please respond to cancer coping survey!!

I'm done with Komen

Blaming Big Medicine

What's really important at Christmastime

Choosing to end treatment

Fruits & veggies: No good?

Awareness is great; how about some progress?

What to do when diagnosed

The new dangers of fructose

_________ gave me cancer

New research on chemicals and breast cancer

Insomnia

Telling someone they have the big C

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What would I do?

"It feels sometimes like the entire world has cancer"

Quick link

A sad, sad story

Three years, all clear!

Cool study!

Birthdays

It's not too late

And now for something a little bit different

More time

"Chaos" within a breast cancer cell

Christmas

What I Eat

Control

The Case of the Disappearing Cancer

"Good" cancers

There's a new ad on my blog

Almost unimaginable

Role Models and Broken Records

A-ha...It's a theme

Exercise, again

Who I was/Who I am

Welcome to the club, Christina

What Not to Say

Sad news

All Clear

Not quite on topic, but very important

Needles

Good eats

Living (off topic, but not really)

Ted Kennedy = attention to cancer

In the news

More problems--and one solution!

And more...

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

I Love Manchego Cheese

Happy 2008!

Sylvia Easley, 9 Nov 1943 - 19 Dec 2007

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

The hair IS growing

Plus ça change...

Because Cancer exists

Justice (and Treatment) for All

Are you aware?

Cancer has me

Don't worry, I don't drink much

Survivorship Plan

Clip'n'Save list of Cancer-Fighting Foods :-)

Another good reason to play volleyball

More nutrition news

Another 3-month check today

Poem

Fear

The Fog

New direction

Girl, resumed

Girl, interrupted

Quick note

There and back again

Giving thanks

A thump in the chest

Lucky

Signs

Light candles and hope this is for good!

T-minus-27 hours