Cancer has me

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

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

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 :-)

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

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

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

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

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

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

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

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

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

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

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

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.