Tuesday, January 31, 2006

Call Me Pincushion

Three needles today.
Internal sonogram, too!
Thimble, anyone?

Sunday, January 29, 2006

Gut check

Not for nothing, but I don't tend to get squeamish or spook easily.

In my lifetime I have:
  • Climbed a nearly-vertical 40-foot rock face;

  • Rappelled back down from said rock face, as well as from a platform bound between two trees 60 feet in the air;

  • Set off thousands of firecrackers;

  • Appeared naked onstage in front of over 3,000 people;

  • Gone spelunking in a dripping wet cavern with spaces so tight I had to scrape my stomach to get through them, with the only illumination being given off by a small helmet lamp;

  • Walked through Bedford-Stuy alone and ridden a motorcycle in the rain; (okay, it was only 50cc's so I guess that's technically a motorbike)

  • Successfully launched myself from a trapeze into a forward layout, been caught, swung back and flipped around to catch said trapeze again (admittedly, with a net);

  • Danced in a kickline. In drag. Dressed as a sheep;

  • Flown from the top of a ridge to its base, hanging from a 200-foot zipwire;

  • Hiked down 50 meters into the crater of a semi-active volcano;

  • Endured, and actually been fascinated by, four surgeries (two knee, one appendix, one abdominal) and two broken limbs (arm and leg);

  • Skied, ice-skated and rollerbladed, all both forwards and backwards, all on said repaired knee and leg;

  • ...and even donated blood on a semi-regular basis.

(No, I haven't gone bungee-jumping, hang-gliding or skydiving, but still...)

With this history, why should jabbing a tiny little needle into my wife's stomach make me positively ashen with apprehension? Jeez Louise.

One down, eight to go. Thank God.

Saturday, January 28, 2006

Early to Bed

The night owls are going to try to change their ways. At least for a while.

Now that we're taking meds in various forms (pills for Z, pills and—starting tomorrow—shots for me) every night at 9PM and soon will have to get up at a most unseemly hour to make it to the least conveniently located doctor's office in New York for daily 7AM blood tests and, for fun, pelvic ultrasounds for me (more on that some other time—I'm sure you're still reeling from all of the Aunt Flo business), we realized that we can't be staying up 'til all hours—for the next couple of weeks, at least.

(Yes, I do think I just broke the Guinness Book of World Records' record for longest run-on sentence, thank you very much.)

And, of course, I am already up past my new bedtime.


Friday, January 27, 2006

Oh brave new world...

Thespians among you may recognize the topic of this post as the utterings of Miranda in Shakespeare's The Tempest. But in point of fact, I was thinking more along the lines of Aldous Huxley's futuristic 1932 masterpiece of the same name. Reading the book was an eye-popping experience for me in 7th grade. Its vivid descriptions of the CENTRAL LONDON HATCHERY AND CONDITIONING CENTRE have stayed with me my entire life.

Fast-forward 27 years as Jody and I, modern-day Bernard Marxes, start to make regular pilgrimages to the Upper East Side in our efforts to try IVF. It's a fascinating, yet other-worldly process which we're jumping into with both feet and much enthusiasm. I've learned more about it in the past 24 hours than I thought possible. Here's a little primer on what it's all about. (More about our decision to do IVF in this post.)

(Digression: The reason we're revealing the nitty-gritty here is twofold: 1) it's therapeutic for us; and 2) there are a lot of folks reading this blog now, and if some of them are facing the same issues, it's our hope that by being open about our experiences—all of our experiences—we can help them in some way. Coincidentally, I finished reading Lance Armstong's book It's Not About The Bike today. There was a lengthy section in it devoted to Armstrong's own experiences with IVF. After reading it, I felt a little less alone and in the dark, and a little more educated and optimistic. If there's a chance we can pass that favor along to someone else, we're happy to oblige. Which gives me the opportunity to repeat once again: if there's anyone you think might benefit from reading this blog, feel free to pass along the URL.)

So as you may have gathered from Jody's Thursday post, there was no sign of her period this past weekend or in the four days since. We finally decided to call the clinic and ask what we should do. We're under a time constraint because the IVF takes about two weeks, and Jody needs to start chemo no later than mid-February, which is a little over two weeks away.

Our IVF doctor had Jody come in for bloodwork and an ultrasound; after reviewing the results of both, he decided to proceed as planned because her ovaries look to be in good shape. (There's a possibility that the lack of a period is simply due to the timing of Jody's coming off Tamoxifien so recently...her last dose was in late December). So we're a go for IVF. (Yay!)

This is where it gets all Huxley-like. Because you wouldn't believe the hoops we're about to jump through. Just having the procedure explained to us yesterday was reminding me of the London hatchery babies referenced above.

As briefly (and accurately) as I can put it:

  • Starting today, Jody will take a daily dose of an aromatase inhibitor (Arimidex), which will keep her estrogen levels low (this is the same type of drug she will take after her chemo is finished, for the same purpose).

  • Also starting today, I will begin a course of antibiotics (Doxycycline) to ensure that my semen is sterile for the in-vitro (sterile meaning "no bacteria" as opposed to "infertile"). Coincidentally, the antibiotics will also rid me of any lurking gonorrhea or chlamydia. So that's a nice bonus for me.

  • Beginning Sunday evening, Jody will receive daily subcutaneous shots of Follistim in her abdomen and/or upper thighs (administered by me). Follistim is a follicle stimulating hormone (FSH). The shot must be given between 7pm and 10pm each evening. We also must take our other meds inside that timeframe.

  • Beginning Tuesday, Jody will visit the IVF clinic daily to have blood work done; this is for our doctor to monitor her progress and see if the FSH needs to be tweaked.

  • For the next week, we'll have the same regimen every day: clinic visit with bloodwork in the morning, pills for me in the evening, pills plus injection for Jody in the evening. Each night when I give her the injection, the dosage may be changed based on that day's bloodwork. The injection is given with a super-neat adjustable-dose cartridge pen that looks like it should be a prize in a box of Space-themed cereal.

  • In about 10 days, Jody will start additional injections of a drug (Antagon) that inhibits some of the FSH's effects. This is to sort of "put the brakes" on the stimulation and ensure she doesn't ovulate too soon. It kind of keeps her ovaries in a holding pattern. We continue with the other meds (including the FSH, oddly enough) and clinic visits.

  • In about 12 days, we'll have "HCG night". HCG (or, human chorionic gonadotropin, dontcha know) is a substance which triggers the release of mature eggs from ovarian follicles. Jody will be injected with Ovidrel, which will cause her eggs to be released almost exactly 36 hours later. The clinic will give us a very specific time for this injection (like "7:20pm", for example). It's crucial that we administer the drug exactly when asked, because 36 hours from our given time will be Jody's scheduled time in the operating room. So no margaritas on HCG night until after the shot.

  • The next day, absolutely nothing happens. Except we sit around freaking out.

  • One day later, in the morning, we head to the clinic, and to our separate rooms. Jody gets put under light sedation while her eggs are harvested. I retreat to the Room of Porn and make my own contribution to the affair. Then while we're both recovering (hey—it's hard work!), sterile lab equipment will be used to unite her eggs and my sperm. After this rendez-vous in a petri dish, viable embryos will (hopefully) be identified and frozen for future use.

All that to make a baby! (or five).

Complicated, isn't it? And there are a lot of hurdles to overcome, not the least of which is we're not really sure what shape Jody's ovaries are in after the chemo four years ago. The good news is the lab folks seem optimistic and positive, and by now you know that that's the tack we take as well.

We'll keep you posted on our progress in the coming days. And we welcome your own space-age observations below.

Thursday, January 26, 2006

On the Down Low

Aunt Flo?
Whoa. Still a go?
Don't know.
Fingers crossed, yo.
More tomorrow. . . .

Tuesday, January 24, 2006

Skip to my loo.

I've been quiet for a while because I've been working with our handyman, Lloyd, as we renovate our bathroom. And lo, the transformation is finally complete.

The three pictures below were taken from roughly the same angle (from our dining area, looking through the bathroom door). Click any picture to see a larger version.

Before, the bathroom was tiny and filthy. We inherited a loo that was a horrible shade of pink. One weekend while Jody was out of town, I painted every tile, every fixture, every inch of porcelain with an epoxy/paint combination called Tough as Tile. Which should have actually been called Tough as crappy Tile, since it lasted less than a year before it began to flake. It flaked so badly in the bathub that the tub's floor was eventually revealed (see the pink?). Also, Tough as Tile cannot be cleaned with any bleach products....so over the past two years we really began to develop mildew issues in the corners. The final straw came when a rotting joist under the bathroom began to give way and the room itself started to sink into the basement. Something had to be done. So naturally, in the midst of Jody's second surgery, we decided to renovate the damned thing.

During the renovation, the bathroom was gutted all the way to the original brick walls. You can see through the joists right down into our basement. That newer joist on the left replaced the rotting one, and the other old joists were sistered (reinforced) with new beams. The plaster on the brick wall was actually the original wall of the room waaaay back (like the 30s, I'm guessing, or maybe before...the building is about 150 years old). We'd hoped to expose all that brick, but it isn't in great shape, so I am playing with the idea of exposing little bits of it.

After the reno was finished (today), we were left with much more space, a new pocket door, beautiful purple walls (I primed them and then did two coats of semi-gloss...It's Benjamin Moore "Gentle Violet" #2071-20 in case you were wondering), better lighting, a new fan, a Toto toilet, a new window, and gorgeous Kempas hardwood floors (ever hear of Kempas hardwood? Neither had I. Who knows what the hell it is?)

We still have some details to put in there... a medicine cabinet, some shelves, maybe a painting or whatnot. But the bulk of the work is finished, which means we can clean up the plaster and return to nearly-normal around here.

What does this have to do with cancer? Nothing. Except, I can sleep better in the knowledge that when Jody starts chemo next month, our powder room—and by extension, our entire cozy home—will be much more relaxing than it was. You take your victories where you can....

Monday, January 23, 2006

Tick Tock

Back to the whole fertility/IVF thing for a moment.

In case you're wondering why we haven't posted anything in a few days, it's because we're just sitting around, waiting.

<Strum of fingers on tabletop>

<Tap of foot on floor.>

<Furtive glances at watch.>

Yep, we're just sitting around waiting for good ol' Aunt Flo to show.

For the first time in five years.

No pressure or anything.

(Yes, I realize this is way more information than you probably wanted. But honestly, there is NOTHING else to report. And, well, you should know by now that we're not pulling any punches here.)

Friday, January 20, 2006

It Just Gets Better All the Time

A few weeks ago, between surgeries, I was fitted for a charming item called a lymphedema sleeve (also known as a compression sleeve). In my case, the sleeve is a preventive measure—I don't have lymphedema at the moment, but I don't want to get it either. (See my earlier post for a bit more on lymphedema.)

Being measured for the sleeve was actually pretty fascinating. The technician who did the measuring used a special kit, comprised mainly of a long paper strip that ran the length of my arm and had tabs jutting out from either side of it all the way down. She painstakingly wrapped each pair of tabs around my arm and secured them with tape. The tabs are marked like a tape measure, so each pair yielded its own individual measurement of the circumference of my arm. If you've ever been measured for a mortarboard, it's the same basic idea.

At the end of the process, I had what looked like a dozen paper bracelets fitted snugly up and down my arm, joined together by the long paper strip. Then she carefully tore one end of each bracelet off at the place where it joined the long paper strip, making sure that each measurement could be read, and folded the whole thing up. She sent it off to the manufacturer, along with a tracing of the outline of my hand and a few other measurements of my palm and thumb. That's because I was getting a sleeve with a gauntlet, which is basically a fingerless glove.

I had no idea what to expect when I went back this morning for the final fitting. I can't say I arrived with quite the same feeling of anticipation that I had 13-1/2 years ago, when I went to pick up my wedding dress. All I'd seen until that day was a sketch, and I wasn't sure what the dress would ultimately look like. I was so unsure, in fact, that I walked right past the mannequin on which it was displayed. Didn't recognize it at all.

Well, there was no mannequin today and no dramatic unveiling. I went back to the fitting room, and the technician reached into a plastic bag and presented me with what I can only describe as a girdle. A girdle for the arm, but a girdle nonetheless.

Think thick. Think beige. Think industrial-strength Lycra. Think elasticized band at the top.

Do not think attractive or comfortable.

Do not think cool in the summertime.

Do not think easy to get on.

Or off.

In fact, think back to the eighties, to wrestling with a pair of tight jeans (before the advent of stretch jeans). Or think control-top pantyhose. (Gentlemen, I don't know what to tell you to think. I'm not sure there is a cultural equivalent for you guys. Help me out with an illuminating comment or two, would you?)

So, looking ahead, I'm going to be a wildly attractive 39-year-old bald menopausal woman wearing a girdle.

Now if I can just find an old pair of tight jeans. . . .

Thursday, January 19, 2006

No Rest for the Weary

Winter break over.
Eighteen and a half credits?
Lots of work ahead.

Wednesday, January 18, 2006

Pains in the Neck

There's a new member of my medical rogues' gallery: the technologist who did the guiding in the ultrasound-guided fine-needle aspiration of my thyroid today.

But first, the good news: my thyroid may be asymmetrical, and it may not be working as well as it should be, but at least it is cancer-free. Hooray!

Back to the rogue in question.

First, she banished Zach from the procedure room. You know how charming he can be, and she was having none of it.

Then she gave me the automaton-inflected spiel about the FNA, which I will summarize as "pinch-burn-wiggle." Pinch and burn refer to the local anesthetic; wiggle refers to the FNA itself—as in the doctor has to wiggle the needle in order to collect the cells. Great description, huh? Just makes you want to sign right up, doesn't it?

Then she disputed my account of my existing thyroid condition. One cause of hypothyroidism is called Hashimoto's disease, in which the body produces antibodies that attack the thyroid. I was tested for these antibodies, however, and don't seem to have them, which means, by definition, that I don't have Hashimoto's disease. When the pathologist (who was in the room during the procedure) said something about it in reference to my case, I piped up with, "I don't have Hashimoto's." The rogue then said, in a voice that carried overtones of a sneer, "Are you shoooooooooooore??"

No, I just make these things up to amuse myself.

Seriously, what stake could I possibly have in whether or not I have Hashimoto's disease? What on earth would lead me to claim that I didn't when I knew in my heart that I did?

In fact, if I had Hashimoto's disease, my endocrinologist wouldn't have sent me for the stick in the neck in the first place, because Hashimoto's involves metabolic activity, and that in itself would have explained why my thyroid lit up on the PET/CT scan. The only reason the endocrinologist sent me for the FNA at all was because he couldn't attribute the PET/CT results to Hashimoto's, and he wanted to make sure that nothing untoward was going on.

But hey, I look like a masochist, right?

When all was said and done (a total of three sticks in the neck—the local plus two FNAs, just because I was there, just to be safe), the rogue escorted me back to the little changing room where Zach was waiting for me. And then she completely infuriated me by telling him, in a tone one might use to talk about one's child in front of that child, that I'd been "a real trouper."

Good thing she didn't try to pat me on the head.

She did, however, feel it necessary to get the last word in. We really do think you have Hashimoto's, she said.

Honey, if being right about what's going on inside my thyroid gives you whatever kind of power you are so clearly tripping on, fine by me.

You're still a rogue in my book.

Tuesday, January 17, 2006

My New Part-time Job

We have already established that being a cancer patient is a fairly time-consuming affair, what with all of the schlepping to and from the seemingly endless array of doctor's appointments, tests, and procedures. We have also established that I generally (MUGA scans aside) tend to view this with bemusement, as if I just happen to have a very active social life (populated primarily by medical professionals).

But I do not share this same bemused perspective when it comes to what I can only term "the business of cancer," by which I mean all of the paperwork, phone calls, and other mind-numbing administrative torture one must endure in order to A) obtain health care and B) not go bankrupt as a result.

Yes, I had to deal with this the last time around. And yes, I do have some nightmare stories from four years ago. But back then, I had professional help (and not of the psychiatric kind). Back then, I had a friend, colleague, and all-around miracle worker named Dawn A) whose job it was to intercede on my behalf with my insurance company and B) who did her job, usually unasked, with unerring grace, efficiency, and sensitivity.

This time around, I am insured by two different companies—one through Columbia, and the other through Zach (and the Screen Actors Guild). The two plans are completely different—for example, one requires referrals, the other doesn't. Some of my doctors participate in one plan, some participate in the other, and some participate in both. I have yet to figure out how "coordination of benefits" is supposed to work. And the one that requires referrals provides conflicting information to me (the patient) and to the providers (my doctors) about what kind of referrals I need. After I was assured that I did not need a separate referral for the MUGA scan, I received a statement saying that St. Vincent's could bill me $4,000 for the procedure because I didn't have a referral. This is the same procedure that I need to have every three months for the next year, so you can imagine how eager I am to get this straightened out.

Aside from inane insurance issues, I am also dealing with the HIPAA-induced tedium of collecting my medical records from various doctors and labs so that other doctors and labs can review them so that we can resolve the question of whether I will be having another course of radiation treatment.

I had planned to spend today working on my J-school master's project. Here are some of the things I did instead:
  • Called the social worker extraordinaire at Mt. Sinai's Breast Health Resource Program to get a referral for a physical therapist/lymphedema prevention specialist.

  • Called my fantabulous surgeon to confirm that I could start physical therapy and, assuming I could, to request a prescription.

  • Stayed off the phone so that the prescription could be faxed to me.

  • Called and left a message for the physical therapist.

  • Received a return call from the physical therapist and gave him some background information.

  • Faxed the prescription and my insurance information to the physical therapist.

  • Fielded three additional calls from the physical therapist's office—two about my insurance coverage and one about scheduling my appointments (twice a week, starting next Thursday).

  • Called the place where I was fitted for my lymphedema sleeve and made an appointment to pick it up on Friday.

  • Fielded a call from my radiation oncologist's office at Mt. Sinai asking that I sign a release form to obtain some of my records from St. Vincent's (specifically, the films of my pre-biopsy sonogram and a CD-ROM of my PET/CT scan).

  • Stayed off the phone so that the release form could be faxed to me.

  • Filled out the release form and faxed it to St. Vincent's.

  • Called my oncologist's office at St. Vincent's to find out how to obtain the pathology slides from my biopsy, which I need to deliver to a different radiation oncologist (the one providing a second opinion) by Friday.

  • Fielded a return call from my oncologist's office.

  • Called Zach twice with instructions on where to go to pick up the films, CD-ROM, and pathology slides.

  • Called the other radiation oncologist's office and confirmed that the other records I need to gather (aside from the pathology slides) could be delivered later on (my appointment is not for another two weeks).

  • Left a message for the IVF nurse we are working with to find out what we are supposed to do next.

  • Left a message for one of the J-school deans, asking for the name of someone at Columbia who could, à la Dawn, help me deal with the university's insurance company.

  • Fielded a return call from the J-school dean, who gave me the name and number of Columbia's insurance guru.

  • Left a message for the insurance guru.

  • Fielded a return call from the insurance guru, told her about the $4,000 MUGA scan bill, and gave her other necessary background information so that she could follow up with the insurance company.

  • Fielded a return call from the IVF nurse and confirmed our next step.

Still to do:
  • Arrange to pick up my old mammogram films from my radiologist's office.

  • Arrange to pick up my breast MRI films from a different radiology office.

  • Deliver the sonogram films and CD-ROM from St. Vincent's to Mt. Sinai.

  • Deliver everything else to the radiation oncologist who is providing me with a second opinion.

  • Schedule two other doctor's appointments.

  • Follow up with Columbia's insurance guru, especially because today's mail brought a new statement saying that I am responsible for another $2,335.05 because—you guessed it—I didn't obtain referrals that I was told I didn't need.

And this is all with health insurance. The mind boggles.

Sunday, January 15, 2006

Wait, There's More

Fair warning: this is a long and somewhat complicated post.

Five years ago, when I was first diagnosed with breast cancer, Zach and I had just one concern: that I live as long and in as good health as possible. That meant treating the disease as aggressively as we could in the hopes of achieving remission and preventing a recurrence. Everything else was secondary.

When we agreed to chemotherapy (standard treatment for someone in my situation), we were told about all of the various side effects. We knew that I would lose my hair, that my immune system would be temporarily compromised, and that I might have some transitory side effects—a bad taste in my mouth, joint pain, tingling in my hands and feet, and other annoyances.

We also knew that the chemo would affect my ovaries in two possible ways. First, it would disrupt my ovarian function, pushing me into premature menopause. But because I was so young (34), and therefore fairly far away from natural menopause, chances were pretty good that this would be only temporary. Second, the chemo might do long-term damage to my ovaries and thus cause infertility problems later on.

Again, at the time, these concerns were secondary. While Zach and I had always planned to have a family, at that point it was something we were going to do in the future. And all we cared about five years ago was making sure that there would be a future.

In theory, we could have tried to hedge our bets by harvesting some of my eggs before I started chemo, but delaying the treatment was a risky proposition—if there were any rogue cancer cells floating around in my body, we did not want to give them a chance to find a new place to set up shop.

And there were other considerations. By then, we knew that my tumor's growth had been fueled in part by hormones, including estrogen. That had two implications. First, several of my doctors felt that it would be too risky for me to ever carry a child because estrogen levels skyrocket during pregnancy. One of my doctors likened it to "laying a banquet" for the cancer to return. Second, harvesting eggs involved hormones, too—they would be used to stimulate egg production so that multiple eggs could be retrieved at once. This was less dangerous but still a risk.

In any event, it would be at least three years—and up to six—before I could even try to get pregnant. First I'd have nearly a year of treatment. Most oncologists recommend waiting at least two years after the end of treatment before trying to conceive because those two years are the most likely timeframe for a recurrence. And in my case, I was going to be on an estrogen-suppressing drug called Tamoxifen for five years after my treatment. Because Tamoxifen would be harmful to a fetus, I'd have to wait until it was out of my system before trying to conceive. While it would be possible to go off the Tamoxifen after two years in order to try to get pregnant, that again seemed risky to us. Studies had compared the efficacy of Tamoxifen at one-, two-, five-, and 10-year intervals, and five was the magic number. Why wouldn't I stay on it for the full five years in order to get the maximum benefit? Of course, by the time I finished the Tamoxifen, I'd be 40, and that in itself raised fertility issues.

Knowing all of that, we pressed ahead with the chemo. And while I did get a sneak peek at menopause (including its finest features, hot flashes and night sweats), it only lasted about eight months. I started the Tamoxifen on my 35th birthday (another reason why I was looking forward to number 40), and we were biding our time before revisiting the whole issue.

And then I was re-diagnosed.

So now we are facing some of the same decisions we faced five years ago, but with some significant differences. First of all, I'm about to have chemo again, which means that the chances of my ovaries emerging unscathed (if they're not scathed already) are rather slim. Second, in the past five years there has emerged a new class of drugs—aromatase inhibitors—that are more effective than Tamoxifen at blocking estrogen and preventing recurrence. So once I finish chemo this time, I will start taking one of those drugs for a five-year period. Here's the catch: those drugs are not able to block estrogen produced by the ovaries, so they only work in post-menopausal women. So in order for one of those drugs to be effective in my case, I will either have to have my ovaries removed surgically (an oophorectomy) or have them shut down chemically by getting a shot once a month for five years. In the first case, I will definitely be infertile right away (no ovaries = no fertility). In the second, there is a high probability that I will be infertile at the end of the five-year period—I'll be 45, and I will have had chemo twice.

But here's the other significant difference from five years ago: there have been developments in reproductive medicine that make it possible to stimulate egg production using the very same estrogen-suppressing aromatase inhibitors that I will be treated with following the chemo. This means that there is now a relatively safe way for us to harvest my eggs, fertilize them, and freeze the resulting embryos before I start chemo again—a slight variation on in vitro fertilization (IVF).

Of course, there is no getting around the fact that I'm 39 and have already had chemo once, which means that this whole thing is even more of long shot than usual. And unlike other couples who can try IVF multiple times (resources permitting), we pretty much have one shot before I have to start treatment—to try a second (or third or fourth) time would mean an unacceptably risky delay.

If anything, we are now more convinced than ever that it would be too risky for me to try to carry a child. And that means—if the IVF goes well and we have some promising embryos to freeze—we will be looking to a surrogate. And that's a whole other minefield that we are not going to try to navigate just yet.

For now, we are just focusing on the IVF piece. We've found a great doctor—one who is doing pioneering research on fertility preservation in breast-cancer patients—and have had the initial consultation, tests, and blood work. (My right arm has improved enough that his phlebotomist was able to get 10 vials of blood with just one stick on Friday. She is my newest hero.) Again, we have a small window to work with, so things will be happening quickly from here on out.

We'll let you know how it goes in future (and shorter) posts.

Friday, January 13, 2006

And Another Thing

A couple of weeks before we started this blog, I had to have a very scary test known as a PET/CT scan. The test is scary because, in my case, it was done to see whether this brand-new breast cancer had spread elsewhere in my body. Actually, this was before we knew that it was a brand-new cancer, so we were still operating under the assumption that it might be a recurrence.

So I was somewhat freaked out because A) I never had to have this test the first time around, B) having it this time meant that there was a legitimate concern that the cancer had spread, and C) PET/CT scans are so sensitive that they can often produce something akin to false positives—things that need to be evaluated further because they "light up" on the scan but eventually turn out to be nothing.

In my case, two things lit up on the PET/CT scan: the area around the tumor (no surprise) and the right lobe of my thyroid.

Now, I have had thyroid trouble for about four years, ever since I finished treatment for the last go-round. (Yes, I've wondered if there is a connection. If there is, I have not yet found it.) Thyroid problems— hypothyroidism in my case—are exceedingly common and not terribly worrisome (in the grand scheme of things) so long as they are monitored and treated. I take a synthetic thyroid hormone every day—it's a teeny pill (maybe the size of a children's aspirin, if that) with absolutely no side effects or drug interactions—and have my blood tested periodically to make sure everything is on track.

In any event, I've known for a while that the right lobe of my thyroid is larger than the left lobe. I even had a thyroid ultrasound less than a year ago to make sure everything was copacetic, which it was. But, of course, I had to have it re-evaluated in light of the PET/CT results.

So today I saw my endocrinologist, and he read the PET/CT report and compared it to the ultrasound report, and even though he is not overly concerned, he wants to be absolutely sure that everything is still copacetic. As do we. Which means I will be having an ultrasound-guided fine-needle aspiration (FNA) next week.

A FNA is a bit like a junior-varsity version of a biopsy—instead of removing actual tissue, the radiologist uses a smaller-gauge needle to remove just fluid and/or cells and then scopes them out under a microscope. If necessary (i.e. if things look suspicious under the microscope), a full-on biopsy can be done later.

Ever since we got the PET/CT scan results about a month ago, I figured that a thyroid biopsy was in my future, so I'm not especially fazed by the prospect of having an FNA. Of course, I'd prefer not to have someone stick a needle in my neck, but at least it's a change from having them stuck in my arm.

Thursday, January 12, 2006

My Twisted View of the World

I was talking to a friend today, updating her on all of the latest goings-on on the medical front, and she said something like (note that I am a responsible journalist and am therefore paraphrasing, not quoting, because I've got the gist but not the verbatim language), It must be a drag to have to go to so many doctor's appointments all the time.

And that's a completely understandable expectation, because it is a hassle to ferry from appointment to appointment. But I generally don't view it that way.

I spent a lot of time choosing my doctors back in 2001, and I happen to really like them as people. And after nearly five years, I know them pretty well, and I genuinely enjoy seeing them.

So I explained this to my friend and then said of my myriad doctor's appointments (and here I will use what would be called a reconstructed quote, but since I'm both the speaker and the quoter, I think it's OK), "I almost think of them as having coffee with a friend. Except that I'm half-naked, and there's no coffee."

We both had a good laugh, but it really is true.

Wednesday, January 11, 2006

Various and Sundry

In no particular order:
  • I am happy to report that my right arm continues to improve.

  • We found out today that my MUGA scan was clear. Seems my heart is a-pumping as it should be.

  • To clarify an earlier post, the latest pathology report showed no disease whatsoever in the three lymph nodes and other tissue removed during the second surgery last week. This means that we now have those magic words, widely clear margins.

  • Several more consultations, tests, procedures, etc. to come before the treatment will actually begin. One major question is whether/when to have radiation treatment (again). Stay tuned. You'll read it here first.

  • I am hereby issuing a blanket IOU for all phone and e-mail messages that I have not yet returned. Note the word yet.

  • School starts again in exactly one week. I am trying to relocate my inner discipline and get some actual work done. The big to-do on my list at the moment is my master's project, which is about humanism in medicine and medical education (a topic I chose based on our last go-round and before I knew there would be a this go-round). Of course, I could probably write a three-volume set on that topic at this point, but this is not a first-person piece. I actually have to do a whole lot of reporting first. Hence the effort to relocate my inner discipline. Wish me luck.

  • Thanks to all who have left guest-book entries or comments, with a special shout out to those who did so in haiku. I didn't intend to issue a challenge but love the fact that several of you were so ready to meet it.

Tuesday, January 10, 2006

Random Haiku

Arm feeling better.
Kitchen stove died yesterday.
Went out for Thai food.

Monday, January 09, 2006

Arms and the Woman

In my surgical-drain-removal-induced glee (five words I daresay were never before strung together), I neglected to mention that I have had a somewhat unusual complication from the surgery last week.

First, some background:

When you've had breast-cancer surgery in which lymph nodes are removed (which I first did back in March 2001), you are thereafter at an elevated risk for a lovely side effect known as lymphedema, which, to oversimplify for the moment, is swelling of the arm (more on this in a future post). I think the one good thing that can be said of lymphedema is that it is not life-threatening. It is, however, in my surgeon's words, uncomfortable and unsightly.

There are many things one can do to reduce the risk of lymphedema, most of which involve avoiding breaking or burning the skin on the "affected arm" (the one on the same side from which lymph nodes were removed). This is why I wear I wear rubber gloves when I do the dishes and why I carry Neosporin and Band-Aids with me nearly every where I go (so that if I do get cut or burned, I can make sure the skin stays clean and dry, doesn't get infected, and heals as quickly as possible). If I gardened (sorry to disappoint anyone who thought I did), I'd wear gardening gloves, too.

You get the idea.

The other big key to lymphedema prevention is to make sure that, going forward, any blood draws, IVs, and blood-pressure readings are done only on the unaffected arm. This means that when I had chemotherapy in 2001, it was always done through an IV in my right arm. And because chemo is, well, poison (to oversimplify again), those eight treatments did a number on the veins in my right arm. (See earlier post about my MUGA scan and the friendly, disbelieving phlebotomist.) Now every time I have to get blood drawn or have an IV started (fairly often, especially of late), it has the potential to be a pretty big production—finding a viable vein (usually down at my wrist or on the back of my hand), getting it on (one can only hope) the first try, etc. (And this is why I will need to get something called a port before I start chemo this time around. More on that joy in a future post.)

So the key things to know before I explain the somewhat unusual complication from last week's surgery are that A) any IV or blood-pressure reading has to be done on my right arm and B) the veins in my right arm are shot.

Last week (and three weeks before that), I had something called MAC—monitored anesthesia care—instead of general anesthesia (which I had for my surgeries in 2001). To once again oversimplify, MAC enables the anesthesiologist to knock you out entirely (it is not a local) but avoids the nasty after-effects of general anesthesia. With MAC, everything goes in through an IV—there is no mask.

So the anesthesiologist started an IV down by my right wrist, and the next thing I knew I was awake and it was over. But the next day, my right arm started to hurt. My left arm hurt, too—that was expected—but I couldn't figure out why my right arm should hurt. It didn't three weeks earlier, after the last surgery. I didn't really focus on it, though, because of all of the aforementioned surgical-drain-induced discomfort. Still, I remember that my forearm was slightly swollen and slightly red.

Two days later, though, Zach and I went to a new doctor, and the phlebotomist there tried to draw blood from my right arm. No dice. I tried drinking a couple of bottles of water to help the cause (dehydration just exacerbates things), and I pumped my hand until I practically reached muscle failure. Still no dice. And, to the credit of the phlebotomist, she didn't even try to stick me. She tied a tourniquet on a couple of times, did that thing phlebotomists do when they're trying to find a vein—flicked my arm in various places to try to get one to overcome its shyness and protrude a bit—and eventually told me to come back another day.

After that, Zach and I headed over to see my fantabulous surgeon (she of the surgical-drain emancipation), and I mentioned that my right forearm hurt. By then, it was redder and slightly more swollen (perhaps because of the tourniquets that had just recently been applied further up my arm).

Redness and swelling after surgery (even somewhere other than the site of the surgery) are never what a surgeon wants to see because the most likely explanation is a none-too-welcome infection. But I had no other symptoms of infection (and was already on a standard post-surgical antibiotic), and the redness and swelling very clearly tracked the vein into which the anesthesia was pumped, so she thought it was most likely a chemical irriration from something in the IV or possibly superficial thrombophlebitis, which sounds ominous but is not a big deal—it's pretty much treated with anti-inflammatories and a heating pad.

My fantabulous surgeon sent me home with a prescription for a different antibiotic so that, on the off chance that this was an infection that just wasn't responding to the first antibiotic (which I'd know because the symptoms would get worse), I could fill the Rx over the weekend and go from there.

The good news is that the symptoms didn't get worse. On the other hand, they didn't get a whole lot better. So, at today's follow-up appointment, my surgeon had me switch to the other antibiotic, start taking anti-inflammatories, and continue using the heating pad. I'm supposed to call her tomorrow with a status report, and we'll go from there.

Meanwhile, my left arm (which seems more like the unaffected arm at the moment) is in pretty good shape. My incisions look great (so says my surgeon—I can't really even see them without some serious contortions—plus we don't have a bathroom mirror, or a bathroom, just yet, in which to try to see them). My range of motion is pretty good and will continue to improve with some specific exercises that I have already started doing.

All in all, things are fine. I will be happier when my right arm bounces back (for one thing, I need to have some blood drawn, but that will have to wait for now), but it's clearly not keeping me from typing. . . . .

Saturday, January 07, 2006

A COMPLETELY off-topic, gratuitous REDSKINS post!

Hail to the Redskins!
Hail Victory!
Braves on the warpath,
Fight for old D.C.!

Run or pass and score
We want a lot more!
Beat 'em Swamp 'em Touchdown
Let the points soar!

Fight on, Fight on,
Til you have won,
Sons of Wash-ing-ton!
Rah! Rah! Rah!


(We now return you to your regularly scheduled blog.)

Friday, January 06, 2006


This post features a funny story and two bits of good news. Just so you know.

Zach and I had one of our myriad doctor's appointments at (ahem) 8 o'clock this morning. This meant leaving the house by 7AM, which meant getting up at 6AM.

If you are a naturally early riser, or have kids who have converted you to being an unnaturally early riser, or didn't have to sleep with a surgical drain (me) or a raging headcold (Zach) last night, then you might think that springing out of bed at 6AM is a non-issue.

Well, first there's the springing part. You don't really spring so much with a raging headcold. And you definitely don't spring with a surgical drain in.

See, a surgical drain is basically a bit of flexible plastic tubing with a hand-grenade-like bulb at the end. It looks like this. At least, the part you can see looks like that. There's also another part that is attached to the top of the tubing that you can't see because it's inside your body. The whole point of the drain is to minimize fluid build-up at the site of the surgery. So any fluid that does build up is immediately drawn outside, through the tube, to the bulb. Where, um, you have to empty it periodically and measure how much of it there is. Which, if you're squeamish (and I am, big-time), is a bit of a challenge. (This is why Zach said, "unlike 4 years ago, she can empty her drain by herself this time, thank you very much" in the post below. He had the great pleasure last time around. I figured it was my turn this time. So I did it. Three times. Thank you very much.)

As I was saying, you can't really spring with a surgical drain in. First of all, it's secured to your body with a few stitches. And it's buried under a wad of gauze strategically located right under your arm, which makes it impossible to lower your arm all the way or find any comfortable position whatsoever. And then your whole midsection is wrapped, mummy-like, with an Ace bandage. And, as an added attraction, the drain is attached to the Ace bandage with a big safety pin so that instead of hanging freely (and pulling on the stitches), the bulb is suspended somewhere around your belly button.

So on top of looking extra-attractive and feeling fabulous, it's pretty hard to move with anything approaching a spring in your step. Getting out of bed in the first place is a major feat of choreography.

First, while lying on your back with a pillow placed ineffectually under your left arm, you bend your right leg and hook your right arm under your knee. Then, in one semi-smooth maneuver, you swing your right leg down, hold tight with your right arm, and contract your stomach muscles so that you see-saw into an upright position (without getting stuck in the middle) and can step onto the floor.

OK, maybe this is springing out of bed after all.

It is now approximately 6:10AM. You have not been allowed to shower since the surgery, two days ago. You are, shall we say, not feeling as fresh as you might like, especially if you have to leave your pajamas and your bed and venture into town to see a brand-new doctor as well as your surgeon (who is used to seeing not-so-fresh post-surgical patients with unwashed, bed-head hair and attractive plastic tubing emanating from their bodies).

Showering is out (as is raising your left arm above your head—not that you could do that anyway), but sponge baths are allowed. Of course, you have no bathroom at this point. (See "Happy Birthday, Jody!" below.) So you gather up your sponge-bath supplies and head to the bathroom of your upstairs neighbor, Bill (hi, Bill!), who has kindly offered up his loo in lieu of yours while he is out of town and yours is out of, you know, a toilet, a sink, and a shower.

And you give yourself a very halting sponge bath (no pictures, sorry) with your very limited mobility.

So now you are clean(er), but you are carrying a wet towel and a little bottle of bath gel, not to mention your pajamas and underwear. And you know that you will be putting on semi-real clothes as soon as you get downstairs. And it's maybe 6:30AM, and you know that Bill is safely in California and that the two guys rebuilding your bathroom are not due for two and half hours, and you're pretty sure that Erin and Sara (hi, Erin and Sara!) up on the third floor are still asleep. And the thought of putting on your not-so-fresh pajamas only to take them off again five minutes later is less than appealing. (You are already tuckered out from your not-so-great night's sleep and the contortions required for the sponge bath, and you know that more contortions will be required to get dressed in semi-real clothes.)

So you decide to risk it and walk downstairs naked (except for the surgical drain, the gauze, and the mummy-like Ace bandage around your midsection).

And a miracle occurs, and nobody materializes on the stairs or in the hallway to see you in all your post-surgical glory.


(That was the funny story. Well, anyway, it seemed funny at 6:30 this morning.)

Here is the good news:

A few hours later, we went to see my fantabulous surgeon, and she removed the drain (with a little local anesthesia) and most of the gauze and the entire Ace bandage. And there was much rejoicing.

And here is the other good news:

The two guys rebuilding our bathroom (hi, Lloyd and Neville!) are tantalizingly close to installing our very own brand-new toilet. (Shower and sink—and photos—to follow soon thereafter.) In fact, they would have installed it tonight had they not been missing one small part. In fact, they wanted to go out and get the part so they could finish installing it so that I wouldn't have to commute to the bathroom for another night, but I'm feeling so good in my drain-free state that we told them to call it a night and finish up tomorrow (when, coincidentally, Bill returns from his trip).

Goodbye plastic, hello porcelain!

Thursday, January 05, 2006

Jody doing well. We get some good news. RSS explained.

A day after the surgery, and Jody is doing great. She's still in pain, but mostly just uncomfortable. On the plus side: unlike 4 years ago, she can empty her drain by herself this time, thank you very much.

Jody's surgeon called today and told us she'd removed three more lymph nodes during the procedure—and all of them came out clean (negative for disease). This is great news. More on that in a future post.

Some of you are wondering what the heck RSS is. I'll try to explain, and then send you places that will do a better job than I can.

RSS stands for Really Simple Syndication. The basic idea behind it is to allow you to easily stay up to date on your favorite websites, particularly News sites or online blogs. Here's how it works:

A site broadcasts its updated articles or posts to the web via sitefeeds. When you find a site you want to keep tabs on, you subscribe to it...or more accurately, to its feed. To do this, you have to have an aggregator, something which checks the feeds for you. Some browsers (such as Safari on the Mac) have an aggregator built right into them. If yours doesn't, you need to download one. (A popular free aggregator is Freereader.) Once you've subscribed, your aggregator will tell you when there are new posts or articles on a site, and will even give you a few words from each post so you can see if the content interests you.

Get it? If not, try looking at this article about RSS.

Once again, we are now RSS-enabled; clicking on the orange icon in the sidebar will give you our sitefeed address. Enjoy!

Wednesday, January 04, 2006

We're syndicated!

Thanks to an excellent suggestion from my high school friend Andy, this site is now available via RSS or Atom. You can subscribe here, or by clicking on the orange feed icon in the sidebar.

All Is Well

Just a very quick post (I'm typing with one hand) to say that today's outpatient surgery went well. No news expected before Friday or Monday, when the pathology report is due. Until then, I will be taking it easy and making my peace with my lovely new (and, I'm thankful to say) temporary accessory: a surgical drain.

Try not to be jealous.

Tuesday, January 03, 2006

Some Good News

Last week, the day after the infamous MUGA scan, I had a fun test known as a breast MRI.

You know about MRIs, right? You lie on a table wearing absolutely no metal at all while a big loud whirring magnet revolves around you and takes pictures of your innards, kind of like an X-ray only much, much, much better (and louder and more expensive and more time-consuming). The extra added attraction with a breast MRI is that you get to lie on your stomach with your breasts dangling (if they're of a certain size, at least), each one in its own receptacle-like thing. You have to do a little wriggling to achieve the proper placement. It's kind of like—well, it's kind of like nothing else I've ever done.

Here's a PG-rated photo of what a breast MRI looks like, although in my case the the receptacle-like thing was different—there was an actual receptacle, not just an opening.

The whole point of a breast MRI is that it is much more sensitive than a mammogram and can detect problems that might not be detected by mammography. The reason I had one was to be sure that nothing worrisome was going on in my right (aka healthy) breast. If something had shown up on the MRI, we would have had to do a full work-up (i.e. a biopsy) and then, if that showed something untoward, well, we've been down that road before.

So the very good news is that the MRI results came back clear.


Now, one could make a case that, given my body's talent and propensity for creating breast cancer, I should have a prophylactic mastectomy on my right side. Doing that would dramatically reduce my chances of developing breast cancer on that side. By dramatically, I mean reducing the risk by something like 98%.

Even though 98% is a pretty big number, you have to remember that I already had a mastectomy on the left side, and that didn't keep me from developing a second breast cancer. That's because a mastectomy cannot remove every last bit of breast tissue (that's the 2%). Some people have breast tissue that goes all the way up to their collarbone. Some people have breast tissue that goes all the way down to their rib cage. And some people (like me, apparently) have breast tissue all the way around their side, near their armpit.

The other thing to know is that having a mastectomy could actually make it more difficult to detect a problem if one were to arise, because scar tissue or a breast implant (like I have on the left side) could obscure a lesion or tumor on, say, a mammogram or sonogram or MRI.

So the consensus that my doctors and I have reached is that absent any evidence of a problem, we will just monitor the right breast aggressively for the rest of my life. And yes, we were doing that anyway. So this just means, in addition to annual mammograms and sonograms and multiple clinical exams and my own self-exams, I will probably add annual breast MRIs to my dance card.

I can handle that.

Monday, January 02, 2006

Birthday Musings

I turned 39 today.

I'm not the biggest birthday person in the world (unless we're talking about Zach's birthday, in which case I make a really big deal of it), but this year I felt even more low-key about it than usual. (Low-key does not equal depressed—just mellow.) I think it may be because it was supposed to be an anticlimactic birthday, not only because it doesn't end in 0 or 5, but also because my 40th birthday was going to have extra significance, thus making number 39 seem extra-insignificant.

Many of you know that four years ago, I celebrated my 35th birthday with unusual fanfare—a big party at a beautiful downtown lounge with incredible live music—a few a cappella numbers sung by Zach and some friends and fellow alums of the Princeton Katzenjammers, followed by a smoking performance by the perennially brilliant Julian Fleisher and his Rather Big Band. My birthday fell just a few weeks after I'd finished nearly nine months of treatment—surgery, chemo, and radiation—so the party was a double celebration. It was also a fundraiser for the wonderful Mount Sinai Breast Health Resource Program. (A renewed thank you to all who helped us raise more than $11,000 for this amazing organization!)

Since then, I've been looking forward to my 40th birthday (yes, really). That's because it would have coincided with an important milestone in the world of cancer—for the statisticians out there, I would have moved into the very desirable "five-year disease-free survivor" category. And, as far as the statisticians are concerned, being a five-year disease-free survivor is tantamount to being cured.

So, yeah, I was really looking forward to my 40th birthday.

And you know what?

I still am.

Because by this time next year, I should be very nearly done with my treatment.

Because by this time next year, I should finally need a haircut again.

Because by this time next year, I should have a diploma from the Columbia University Graduate School of Journalism.

Because by this time next year, I should be spending weekends in Phoenicia, with Zach and family and friends.

Because by this time next year (er, week), I should have a lovely new bathroom. (See post below.)

Because by this time next year, I should be starting to look forward to my 45th birthday, and all the ones beyond.

Happy Birthday, Jody!

My dearest:

For your twenty-nineteenth birthday, I decided to have people over here at 9am to rip out our hideous, disgusting, falling-apart bathroom...

...and replace it with a shiny new one!

Unfortunately, your gift was not quite finished before the end of the day:

But it's the thought that counts!

Happy Birthday, and all my love,


Sunday, January 01, 2006

Sweet Sixteen

Last night, Zach and I hosted our 16th(!) annual New Year's Eve dinner party. It's one of our favorite traditions. Over the years, we've had as many as 25 people for a formal sit-down dinner (black tie and all) and as few as two. This year, we welcomed five friends, and Zach outdid himself once again in the kitchen. (Most years, I play sous-chef and even contribute a dish or two. This year, it was all Zach, all the time.)

We always like to break the number-one rule of dinner parties, which is never to make a dish for the very first time. This year, Zach broke it in spades, with four different dishes. And, of course, everything was wonderful. Here's the menu:

Three-Cheese Fondue with Champagne with Homemade Baguette and Sliced Apples

Tomato, Goat Cheese, and Onion Tart

Salad with Four Lettuces, Grilled Fennel, Toasted Walnuts, Dried Cranberries, Sliced Clementine Oranges, and Sherry Vinaigrette

Tournedos of Filet Mignon à l'Orange, Topped with Stilton

Grilled Asparagus with Lime

Sautéed Pattypan Squash with Balsamic Vinegar

Roasted Confetti Potatoes

Homemade Dinner Rolls

Cream Puffs with Vanilla Ice Cream and Chocolate Sauce

Special thanks to Cyrus for inspiring the salad and the main course with his delicious Christmas dinner last weekend.

This past year was a tough one all around for our families, and we were glad to usher it out at last. We're already looking forward to NYE dinner number seventeen, and to breaking the rules again.

Warmest wishes to you all for a glorious 2006.