Friday, December 30, 2005


We escaped.

Yesterday, Jody and I felt an overwhelming need to escape: escape our crammed calendar, escape the parade of doctors' appointments, escape the familiar environs for something exotic—even if only for a few hours. So toting little more than our toothbrushes, we hopped into our beloved '88 VW Cabriolet late last night and drove upstate, arriving at our country house in Phoenicia, NY by 11:30.

We bought the house scarcely a month ago, the culmination of years of dreaming for a little patch of ground that we could slip away to when NYC was too draining and we needed a recharge. We had planned to spend the next several months whipping the house into shape and furnishing it. Those plans are absolutely still happening, just with a bit of a reworked timetable while we deal with the current matters.

So for now, we had to be happy with zipping up, making a fire, blowing up the aerobed, spending the night, and zipping home again this morning. Half of the reason we took the trip was to make sure the house hadn't blown away or burned down while we ran around seeing medical folks for the last three weeks. (I was at the house repairing a door on December 5 when Jody first called me with the news that the lump she'd found was malignant. It was agonizing being two hours away and not being able to hold her and console her. I resolved on the spot to be sure that I'm always with her whenever she receives news from now on, even if we fully expect that news to be good.)

Our sojourn last night was the first time back to Phoenicia for either of us since I left on the 5th. Everything was just as I'd left it, naturally. We unwound a bit, took in the peace and quiet of it all, and reminded ourselves that there will be a life for us outside of all the crap that is yet to come.....

Stop by and say "Hello"

Just for fun, we've added a guestbook.

To sign it, use the link in the right-hand sidebar, or you can just click here.

Also, as we've said before, comments (even snarky ones) make our day.

Wednesday, December 28, 2005

Ready for My Close-up

This morning, Zach and I headed over to the nuclear medicine department at the hospital for a little fun known as a MUGA (pronounced "MUGG-a" scan. MUGA (or, more accurately, MuGA) stands for multi-gated acquisition.

Yeah, I don't really know what that means either.

And, yes, I did ask the technician to explain it.

Here's the layperson's version of what it is:

First, you go to the wrong building. Then you are sent to the right building, but to the wrong room. Finally, you land in the right place, where it is approximately 86 degrees. So you immediately strip off your down jacket, scarf, and fleece. This helps very slightly.

Then you wait for someone to come out from the back and call (by which I mean, of course, mispronounce) your name. Then you and your incredibly handsome husband go into a conference room in the back, where a medical resident explains the procedure to you (sort of) and you sign the consent form.

Then you go back to the waiting room. This is a small space with 10 chairs in a U-shaped configuration and a TV set above the right-hand arm of the U. The TV set is playing "Guiding Light." You take out your magazine but find it impossible to read given the noise of the TV right above your head and the sauna-like temperature. You get a headache from both. Later, you will remember "Guiding Light" with fondness. Really.

Eventually (you have lost all track of time at this point) a friendly phlebotomist will call (mispronounce) your name and take you and your incredibly handsome husband to another room down the hall. She will speak to you in a thickly accented English. You will think she is Dutch. In fact, she will be from Georgia (the former Soviet Republic, not the Peach State).

You will wait while she finds someone to serve as a witness. Then you will recite your name and birthdate, twice, and wait for each of them to sign some document that will protect them and the hospital if you turn out to be some sort of impostor. Because, of course, lots of people try to fake their way into nuclear medicine departments to have MUGA scans. Right.

You will tell the friendly phlebotomist that the veins in your arm are shot and that she will probably have to use one at your wrist or on the back of your hand. She will not believe you. Eventually, after tying a tourniquet around your upper arm and asking you to pump your fist a few dozen times, she will see the light. She will untie the tourniquet, move it down to your writst, and stab you on the back of your hand. (I mean stab in the nicest, gentlest possible way.)

On the bright side, she will get your vein on the first try. Then she'll take out 2cc of your blood (not very much), remove the needle, apply a [insert generic name for Band-Aid here] and tell you to apply pressure for a while. She will tell you that a technician is going to tag the blood with a radioactive substance, after which it will re-injected into your vein. She will say that it will take half an hour. (Don't believe her.)

Then she'll send you back to the waiting room, where a woman sitting across from you will get up and change the channel from "Guiding Light" to "Maury Povich." You will get to hear (but not really see) a man try to convince his girlfriend that he did not, in fact, sleep with any of her friends or family members. Maury Povich will announce that a lie-detector test backs up these claims. The girlfriend then promises to abandon her suspicions, at which point, on cue, the man drops to his knee (you can kind of see this out of the corner of your eye) and proposes. Then a voice-over will solicit other couples who need a lie-detector test to prove or disprove infidelity to be future guests on the show.

Just when you are giving thanks that "Maury Povich" is over, "The Jerry Springer Show" will come on. His guests will be a wife and mother of four whose husband has been having an affair and—you guessed it—the other woman. They have what can only be termed a catfight against a backdrop of cheering and jeering from the audience and the sound of a boxing-match bell ringing every so often. You will calculate the chances of retaining any brain function if the channel is not changed. Then you will very politely ask the other five people in the waiting area whether anyone would object to the channel being changed. You will hold your breath. No one will object. You will exhale.

Your incredibly handsome husband will get up to change the channel, and the woman sitting closest to you will request "Martha Stewart," whose guest will be Bette Midler. Your incredibly handsome husband will comply.

You will think that anything will be an improvement over the last three selections when a voice-over announces that on today's show, viewers will learn how to make a Halloween costume of a witch using nothing but garbage bags and duct tape. You will despair for your soon-to-be-lost brain function. You will try to read your New Yorker. You will fail.

A different woman will then start a trash-talking campaign to get the channel changed back to "Jerry Springer." This will happen even after the woman at the front desk has walked over and announced that it is against hospital policy to tune the TV set to whatever channel carries "Maury Povich" and "Jerry Springer" because those shows are not relaxing for people about to have the tests they have traveled to the nuclear medicine department to undergo. Your incredibly handsome and diplomatic husband will manage the situation so skillfully that "Jerry Springer" is not heard from again.

Eventually, the friendly Georgian phlebotomist will come calling (mispronouncing) once again, and you and your incredibly handsome husband will return with her to the tiny room where she will once again have to find a witness to confirm that you are the same person you were an hour ago when she first confirmed it. Everyone will sign another form, and she will re-inject you with your newly radioactive blood. While she is doing this, she will ask you if you have children and then, in a misguided effort to be sensitive, tell you that you will absolutely be able to have them after you have finished the chemo. Then she will use about five strips of tape to secure a piece of gauze to the spot on your hand where she has stabbed you a second time. Then you and your incredibly handsome husband will be escorted across the hall to the room where the actual test will happen.

There, you will be asked to lie on a long, thin table. You will not have to change into a hospital gown. (This will seem like a major coup.) Three electrodes will be attached to your chest and stomach by one of the two trainee-technicians, who will then try to convince your incredibly handsome husband to leave the room because you are giving off radioactivity. (Translation: she prefers not to learn in front of an audience.) He will gallantly elect to stay after confirming that there is not, in fact, any real danger.

You will be instructed to stay perfectly still while a camera is positioned at an angle above you and the first of three studies is done. The trainee-technicians will figure out how to use the remote control for the table and camera with only a couple of missteps. You will try in vain to nap during the seven-minute study.

One of the trainee-technicians will then re-position the camera so that it is directly above your head. You will watch with concern as the camera comes uncomfortably close to your face, but you will not flinch. Much. Then you will spend seven minutes trying not to develop claustrophobia.

For the last study, one of the trainee-technicians will move the camera back over to your left side. You will lean your left arm up against it for a five-minute study. When it is over, the technicians will have a three-dimensional view of your heart and be able to measure your cardiac function. Your oncologist will use this information to determine whether it is safe to give you a new drug that is very effective against some breast-cancer tumors (like yours) but carries a cardiac risk. Assuming your heart is working just fine, you will be given the drug (Herceptin) for the next year and will repeat this test every three months to make sure that there are no ill effects.

You will then be escorted to the waiting room while a doctor quickly checks the studies to make sure they were done correctly. You will get to hear Bette Midler sing one more song before you are finally free to go.

Total time in the nuclear medicine department: three hours.

Total time not sitting in the waiting room: 45 minutes, tops.

Monday, December 26, 2005

Hope for the future

There's an excellent article in today's NY Times which talks about Gleevec, the first of a new class of drugs to fight cancer. You may remember the splash Gleevec made a couple of years ago when it showed very promising results in halting and even reversing a rare type of colon cancer.
Mr. Weinstein is alive today and still taking the [Gleevec]....His treatment was based not on blasting cancer cells with harsh chemotherapy or radiation but instead on using a sort of molecular razor to cut them out.

That, Dr. Druker and others say, is the first fruit of a new understanding of cancer as a genetic disease.

Many of the next generation of cancer drugs will, like Gleevec, be based less on traditional profiling (ie, breast, ovarian or prostate cancer, etc) and more on the genetic mutations that cause cells to become malignant. Gleevec is something of a blueprint for these drugs to follow.

And although nothing like Gleevec is available for breast cancer patients today, drugs with similar mechanisms of action are in the research pipeline.

[Editor's note: that last link does work, but the site it is a part of appears to be down this morning.]

Sunday, December 25, 2005

To Sleep, Perchance

I write from Brookhaven, PA, where a plurality of Zach's family has gathered for a very secular and predominantly gustatory Christmas celebration. Other than a couple of quick overnights upstate, this is the first time we've been away from home together since school began in early August, and the company and change of scene have been as restorative as I'd hoped.

We're staying with Zach's older brother, Cyrus; his wife, Caroline; our nephew, Ben, age five; and our niece, Madeleine, age two. Zach's mother, Rosemary, is here, too. It's the first time I've gotten to see everyone since the summer. Zach's sister, Torre, called from Tasmania, where she and her husband, Ed, are vacationing after an expedition to Antarctica (nice work if you can get it!). We toasted Zach's father, Barry, who we hope was looking down on us with satisfaction.

The Brookhaven Knowers live in a wonderful house, with a great big kitchen we envy and a wood stove that makes for the coziest of mornings, afternoons, and evenings. We had a most leisurely and indulgent day that included, in my case, never getting out of my pajamas. That seemed appropriate—after sleeping in this morning, I gave Maddie a run for her money with two separate naps later in the day (one induced by the wickedly potent Knower family eggnog). It didn't quite make up for the all-nighters of the past semester, but it was a nice start. Another cup of eggnog later, and I'm off to slumberland again. Aaahh.

Saturday, December 24, 2005

What IS Cancer?

It may seem like a silly question. But a lot of people don't know.

I remember thinking of cancer as this vague mysterious thing. An oozing cloud seeping through the body. A kind of creeping death. When we grew up, cancer was hidden behind whispered voices (as in the memorable dinner scene from St. Elmo's Fire), shrouded in tense mystery.

The problem with mystery is that the unknown is intimidating to all of us. Lack of knowledge leads to guessing, forecasting and positing based on emotions (in this case, fear) instead of facts.

Jodes and I have always felt we were better fighters when we were armed with the facts. In our first go-round in 2001, we studied countless web pages. Jody read 7 or 8 books, maybe more. I read a couple as well. We got multiple opinions from different doctors at every stage of the process. We felt (and still feel) that being well-versed in the actual mechanics of the thing was going to help us immeasurably. And day-to-day, I find that the ability to name the beast, the familiarity with its tendencies, the knowledge of its weak points....these things give me hope. Because it's no longer a mystery. It's just a problem to be solved.

So what is cancer?

Cancer is, essentially, a cell that divides without stopping. It's a cell that doesn't know when to quit.

Most cells which divide have "instructions" built into them that let them know they can stop replicating. For example, when you get a cut, your blood cells coagulate and create a scab over the area. But when the area is covered to a depth of a layer or two, they slow way down. They don't spread over other parts of your skin or form a tower on the surface. Evenutally, as dead cells flake off the outside of the scap, new ones are being built underneath. And when the area is healed, they stop replicating altogether.

That's what normal cells do. They stop. Cancer is different because it doesn't stop.

I first learned this years ago when I auditioned for the part of the doctor in Margaret Edson's excellent play, Wit. This was the scene I had to prepare:
JASON: (agreeing) It is. It is awesome. How does it do it? The intercellular regulatory mechanisms—especially for proliferation and differentiation—the malignant neoplasia just don't get it. You grow normal cells in tissue culture in the lab, and they replicate just enough to make a nice, confluent monolayer. They divide twenty times, or fifty times, but eventually they conk out. You grow cancer cells and they never stop. No contact inhibition whatsoever. They just pile up, just keep replicating forever. (Pause.) That's got a funny name. Know what it is?

VIVIAN: No. What?

JASON: Immortality in culture.

VIVIAN: Sounds like a symposium.

JASON: It's an error in judgment, in a molecular way. But why? Even on the protistic level, the normal cell-cell interactions are so subtle, they'll take your breath away. Golden-brown algae, for instance, the lowest multicellular life form on earth—they're idiots—and it's incredible. It's perfect. So what's up with the cancer? Smartest guys in the world, with the best labs, funding—they don't know what to make of it.

So there you have it. Cancer, more than anything, is a mistake—one we haven't figured out how to correct yet. What it isn't is some malicious beast hiding behind the closet door or under the bed, breathing, waiting to take us down. It's just a bunch of stupider-than-normal cells.

Knowing this has helped me a lot. It has made the problem seem more solvable, logical. Because there are lots of ways to kill a cell, and lots of ways to inhibit a live cell from replicating. We just need to find the right ones.

Friday, December 23, 2005

Ground Rules

If you found your way here (and thank you for coming), you know by now that the last few weeks have brought unwelcome news and that Zach and I are facing another go-round with breast cancer. If you were with us the first time through, in 2001, you know that we are tackling this as we do everything else in life: steadfastly together, with relentless optimism, stubborn determination, and genuine good humor. We'll get through this, sucky as it may be, and even have some fun along the way. (Yes, you read that right.)

We started this blog for two reasons: to keep ourselves sane and to give fine folks like you (aka our cherished family and friends) an easy way to keep tabs on us over the months to come. One thing we learned the last time around was that it was sometimes a challenge to stay current with everyone and to return calls and reply to e-mail messages as promptly as we'd have liked. This is not a subtle hint that you shouldn't call or write—you should (only if you want to, of course). It's just a pre-emptive assurance that not hearing back from us right away carries no deeper meaning.

Most of you know that I returned to school full-time in August and am scheduled to graduate in May from Columbia University's Graduate School of Journalism. It's an intensive program, which is why I have been somewhat incommunicado for the past several months, but I am hoping to remain on track and finish on time. That will likely make it especially difficult to stay in touch over the course of the spring semester, but I am hoping that this blog will help.

To start things off, here are a few ground rules:
  1. As with last time, this is not a secret. If sharing this blog or telling someone about our experience will bring aid or comfort, share and tell away.

  2. Don't walk on eggshells around us. We're OK—really—and don't want to be treated any differently than before.

  3. Jokes are welcome. Bald jokes will be especially welcome pretty soon. Keep 'em coming.

  4. There's really nothing you can do, but if something comes up, we promise to let you know right away. (Of course, my mom pretty much has dibs on this one.)

  5. You can be funny, profane, outraged, outrageous, cheeky, or charming, but please—whatever you do—do not be maudlin.

  6. Please leave comments—it's one great way for us to stay connected.

  7. We reserve the right to add more rules at any time.

Thanks so much for stopping by. Come back anytime.