A Great Public Service

Today's New York Times includes a special three-story feature that focuses on the odyssey that cancer patients often face in getting screened, diagnosed, treated, and reimbursed.

As both a cancer veteran and a journalism neophyte, I tip my hat to Denise Grady, the Times reporter who wrote all three uniformly excellent stories.  They are packed with vital, potentially life-saving information as well as compelling personal stories.  

Make the time to read them—today—for your own sake and for anyone you care about who might be grappling with these challenges now or sometime down the road.

Before I get to the links, here is my highly edited version of the most salient points of the stories, which comport completely with my own experience:

1. Don't delay.  Get unusual or suspicious symptoms evaluated immediately.  There is absolutely nothing to be gained—and possibly everything to be lost—by waiting.
2. Get a second opinion.  Pay for it out of pocket if you have to, but see a top expert at a top institution, even if you aren't going to be treated there.  If the second doctor concurs with the first, you will have great peace of mind going forward.  If you get conflicting opinions—as I have, more than once—you will have more work to do to sort things out, but it will absolutely be worth it in the end.
3. Don't back down.  If your insurance company denies coverage, rejects treatment, or refuses reimbursement, FIGHT.  Find someone to help you advocate—or to do it on your behalf—and don't give up.  

Links to the stories:

• Cancer Patients, Lost in a Maze of Uneven Care
• Obstacles to Care:  Doing Battle With the Insurance Company in a Fight to Stay Alive
• What You Should Know:  Push Hard for the Answers You Require

The first story includes a link to another incredible resource, the National Comprehensive Cancer Network Treatment Guidelines, which gives nearly encyclopedic information about many kinds of cancer (although not, for some reason, Hodgkin's lymphoma).  It also includes an interactive decision tree that allows you to specify the kind of cancer you have (type, stage, tumor size, number of lymph nodes involved, and other characteristics) and then provides a summary of the relevant treatment guidelines.  They are just that—guidelines—but they provide a helpful overview of what the mythical average patient can expect under given circumstances.

Go.  Read them now.

Friends in Need

You would think that after going through breast cancer twice, I'd be a walking Emily Post on the etiquette of supporting someone who's at the front end of the process.

But I have to say that it's still a pretty tricky proposition.

I've had occasion to think about this a lot recently, because two people I know professionally were recently diagnosed with cancer—one breast, one not. And while I've offered support and answered questions, I still feel like I'm not doing everything I could be doing to help them through this.

Part of it, of course, is that everyone is different. I know that when people ask me for theater or restaurant or travel recommendations, it is very rare that I give an immediate answer. I almost always ask them a lot of questions first, to gauge their tastes and pet peeves (and budget). A first-time visitor from small-town U.S.A. is likely to want different things out of a theater experience than a culture-savvy local, and I'd tailor my suggestions accordingly.

The same is true in this situation, but it's much harder to suss out the preferences of a newly diagnosed cancer patient than it is the predilections of someone at the TKTS booth. Often, the patient doesn't even know her or his own preferences—the experience is so singular that it's hard to anticipate how you will handle it.

I'm trying not to assume that what I'd want is what they want, but it's hard not to use myself as a guide. During my first go-round, I remember realizing that one friend had been strangely silent. We hadn't been in close touch recently, but I was pretty sure he'd heard the news from a mutual friend. I thought about it for a while and figured that my friend hadn't suddenly become insensitive; it seemed more likely that he just didn't know what to do, so he did nothing. Turns out I was right.

Here's a portion of our e-mail exchange from June 2001, which began with my sending him a breezy message that, at the end, referred to what was going on in an effort to give him an opening.

Me: . . . [D]id you hear my sucky news? I'm guessing yes (Mutual Friend said she was going to tell you). So, do you have any good bald jokes?

Him: . . . There's no way around this. I'm a bad friend. Mutual Friend told me a while ago, and I've got 3 drafts of a letter to you that I just never sent. They either seemed too maudlin, too flip, too well, wrong. So I never sent you anything, which makes me a cad. Wife and I have been thinking about you and feeling for you. I'm sorry I didn't share that with you earlier.

Me: . . . [Y]ou're not a cad. I had a feeling that you might be feeling awkward about things, which is why I wrote in the first place -- to let you know that it's OK. And that I'm OK. (I mean, I'm bald and lopsided and feel crappy more often than I'd like, but other than that I'm OK.) It's been an ordeal and will continue to be one for some time, but I'm getting through it a day at a time, which is pretty much all you can do in this situation. I'm grateful for a lot of things, and one of those is my friends. So just be my friend -- write me messages like the one below [it was a very funny message] every once in a while so I can feel like a normal person now and again. And be patient if I take a while to respond. That's it. Cool?

If I were writing that message today, I'd add, "You're going to feel helpless no matter what.  There's just no way around it."  Cold comfort, but true.

With all that in mind, I've just written thinking-of-you-but-no-need-to-reply-type e-mail messages to both colleagues.  

And I'm trying hard to make peace with my helplessness.

In Which I Employ a Tortured Metaphor

I've been feeling a bit automotive of late.

This might be because our own car has been through the wringer, what with the back window blowing out and the ragtop getting slashed and the engine slowly giving out.

But I think it's because—and bear with me through this terribly inapt analogy—I'm in the process of switching to a new oncologist, and in some ways it feels like I'm a car with a new mechanic. Actually, it feels like I'm a car that's been rebuilt after a serious collision, and the new mechanic wants to be sure that everything is working as it should be.

Now, I already do the equivalent of preventive maintenance and annual inspections on my own. In a typical year, I generally go for a physical, a mammogram and breast sonogram, an eye exam, and a skin-cancer screening, plus semi-annual trips to see my breast surgeon, my gynecologist, and my dentist. I see my rheumatologist (for the estrogen-withrawal-induced joint pain), my endocrinologist (for hypothyroidism), and my oncologist about every 3-4 months apiece. If I'm really on my game, I have my cholesterol checked a few times. And this year I'm due for a colonoscopy to boot.

All that stuff is pretty routine for me at this point. I don't get stressed about it beforehand, and I'm fortunate that I don't have "white-coat syndrome"—walking into a doctor's office doesn't automatically jack up my blood pressure. In general, I deal with these things pretty serenely.

But my serenity was challenged but good last week. My new doctor told me that she wanted me to have a follow-up PET/CT scan now that I was completely finished with my treatment. My brand of breast cancer has been particularly sneaky, she said, and she just wanted to be sure that it wasn't lurking somewhere, planning another assault.

I was a tiny bit unsettled when she said this. To this day, whenever anyone asks if I'm "okay now," I'm always circumspect. There's no definitive way to answer that question in the affirmative—unless by "now" the person means "right this very instant." But "now" typically means "as opposed to then"—it's a continuous state from "right this very instant" through the foreseeable future.

So I always say, "As far as we know" and try to leave it at that.

When the doctor told me she wanted to go for this test, it was a tacit acknowledgment of the fact that "as far as we know" really means "we don't know."

Because we don't.

And I have to live with that uncertainty every day, for the rest of my life.

And so do Zach and my parents and my sister, and everyone else in my family, and all of my friends.

The PET/CT is scary because a good result isn't all that comforting—things can always change—but a bad result can be devastating. So it's pretty hard to walk in with a carefree attitude.

And although I'm not typically a superstitious person, two things were nagging at the back of my mind. The first was that I was having the test the day before Zach's birthday, which meant that I'd be wondering about the results throughout the next day's festivities.

The second was that I'd completely forgotten my talisman that morning—I walked out of the house wearing something other than orange panties. Zach tried to convince me that this was a good thing, that I'd gotten to the point where I no longer needed a talisman, but it unnerved me just the same.

And then things did not go smoothly at the radiology place. We arrived on time but started a bit late because it took so long to fill out all of the paperwork. The tests are done on a very precise schedule, so the delay did not endear us to anyone. After a few preliminaries, Zach was sent back to the waiting room, and I was prepped for the test, which mainly involved getting injected with a radioactive dye. The only problem was that the technician could not find a working vein.

And by "could not find" I don't mean "was unable to locate." (That would have been far preferable.) Instead, I mean the guy jabbed me with a needle, did some painful excavation, succeeded in causing my vein to collapse, and then repeated the whole process again—and again—before giving up and calling in reinforcements.

It took three people a total of six tries—including one in my foot—to get a viable vein, which means that I've been walking around ever since with enough bruises and needle marks to pass for a longtime drug addict.

The exceptionally good news, which I got two days later, is that the test results were perfectly normal.

So can I deal with a few temporary dents and dings?

You bet.

Because the rest of my chassis is in pretty good shape.

It's Him!

You may have seen Zach on a series of promos for a SciFi Channel show called Eureka!, which is just starting its second season.

The promos are styled as infomercials for fake products, although not everyone seems to be in on the joke. Last year, Zach was in the first few spots of this series, and thousands of people called in to try to order something called the CryoKennel, somehow believing that they could actually freeze their pets while they were away on vacation and then just hit "defrost" when they got back.

Seriously.

If you don't watch TV or just haven't seen one of the spots on the air, you can watch them online here. (You have to follow the "Play Video" prompt, after which all three spots will play automatically.)

And remember: Operators are standing by.

Goodbyes

I got my stitches out on Monday (before-and-after photos to follow once I've healed a bit more). It occurred to me that I'd never see this particular surgeon again, which was both fantastic (I've had enough surgery to last a lifetime) and a little bit sad (he's a really nice guy).

Saying goodbye to him turned out to be good practice, though, because from his office I walked straight over to the cancer center to do the same thing. Since MOSWO gave up his practice, I have been trying to find myself a new oncologist, and the process has dragged out for more than six months.

In part that's because life had been too—let's call it hectic—between my dad and school and stolen computers and disintegrating cars. But the real reason, I think, is that I was in denial about MOSWO's departure and therefore unmotivated in the search for a new doctor.

And I had the luxury of being unmotivated because, unlike most people looking for an oncologist, I wasn't being propelled by the terrifying news of a cancer diagnosis. I could afford to take my time because I didn't need to run headlong into treatment.

So over the past six months I met with three different doctors and finally, a couple of weeks ago, made my decision. It so happens that the new doctor is affiliated with a different hospital, which means that I need to move my voluminous records from the cancer center where I've been treated for the past six years. I had already moved my much-less-voluminous records once before, because MOSWO moved to the cancer center from yet a different hospital just a few months after I became his patient, back in 2001.

It's going to be strange to start over with a new doctor at this particular juncture. With MOSWO, it was a treat to go in for routine check-ups. We had bonded so strongly during the intense experience of diagnosis and treatment—twice—that it was like catching up with an old friend: our shared history cemented the relationship. Working with a doctor who didn't see me through the really tough stuff won't be the same—she doesn't have any frame of reference for me, and she won't be seeing me often enough to develop the acute familiarity that expedited so much between MOSWO and me.

All of that is unavoidable, I realize. And I am very confident in the new doctor, who was independently recommended to me by two of my other, very trusted doctors. I'm sure we'll build a solid relationship.

It's just going to take time.

Your Results May Vary

Finally got the insurance claims mailed off yesterday. It cost me just under $20.00 in envelopes and postage to submit just over $3,000 in claims. I don't even want to guess how much will actually be reimbursed, but I'm hoping for at least 50%.

It's kind of scary to think that spending a week on this project will likely net me more than I could have made if I worked the same amount of time at an actual job.

Of course, I don't have an actual job.

But I am, in fact, looking for work of the temporary variety. Hence my humbling visit to a temp agency on Tuesday.

For the record, I type 66 words per minute. Well, 69 if you don't count errors. And I'm sure I would have made fewer errors if the text I had to type hadn't been so poorly and ungrammatically written that I was copy-editing it in my head as I went along.

Also, I scored 90% on the Excel test and 87% on the Word one and am chagrined not to have done better. In my defense, let me say that I've been using both programs at least half as long as the guy who screened me has lived and never once had to use the "Web Page Preview" function. Little wonder that I did not know where to find it. (I know now, thank you very much.)

Today I found out that legal proofreading pays pretty well but that people generally don't want to hire a legal proofreader with, you know, a law degree—even one that's never been used and still in its original packaging. It seems that proofreaders without those pesky J.D.s are less inclined to overstep their bounds and better able to repress the desire to rewrite the text they've been asked to review.

Fair enough. But I'd like to point out that I did resist the urge to mark up the typing-test text mentioned above.

Maybe because it was encased in plastic.

And to Celebrate

I spent nearly all of my free time last week going through every single medical bill, receipt, and insurance statement in the house.

Later today, I will be spending some quality time at the local FedEx/Kinko's branch, where I will be making photocopies of all of the documentation required to submit 45 separate claims.

I would be submitting more, but we missed the deadline on a bunch of claims.

The deadline is 15 months from the date of service (a word that, by rights, should be in quotes). Fifteen months is a really long time, but we missed it nonetheless in more cases than I care to admit. This would grieve me if not for our new, post-Greece mentality.

My updated spreadsheet now has 210 separate line items based on the insurance statements we've received and another 117 line items for individual out-of-pocket expenses for the past 19 months.

Not counting IVF, those expenses total $5,866.67—so far—of which we've recouped $1,267.43 (so far) through insurance. Including the IVF expenses gives me a headache. (It more triples the first figure but does not have nearly the same inflationary effect on the second.)

Here's a real mind-blower for you:

The retail cost of my one year of intense treatment—chemo plus Herceptin every three weeks for four months, then Herceptin alone for eight months—was three hundred sixty-nine thousand five hundred sixty-one dollars. (In my opinion, figures that astronomical deserve to be written out in full.)

That's what my insurance companies were billed, anyway.

And that does not include things like:

• the three surgeries I had before chemo;


• the two I had afterward;


• the many, many visits to my portfolio of physicians;


• all of the prescriptions I have filled;


• the endless lab tests ordered on my behalf; or


• the various—and not remotely bargain-priced—radiologic and nuclear-medicine scans I have endured.

I will probably figure out the grand total someday. Just not today.

Anyone care to join me at a screening of Michael Moore's Sicko this week????