Check up, check in

We went to New York late last week for a CT scan marking my completion of the first six weeks of brivanib. The scan showed that my tumors have grown by something like 5 to 8 percent, which falls within the margins of stable disease, so I will continue on the study for at least another six weeks. My doctor also threw me a bone: He felt the tumors looked "different," perhaps less dense, in a way that may show the drug is beginning to work.

I'm happy to be able to continue on the trial, but the visit did little to relieve my anxiety. Although stable disease is a reasonable enough treatment goal for me right now, I'd prefer to see "stable" marginally smaller or "stable" no change than a "stable" with growing tumors. I also haven't read the radiologist's formal report yet, which is invariably depressing. Whether it's their equipment or their people, merely going to Sloan Kettering and running myself through one of their machines revealed all sorts of problems I didn't know I had. There are no secrets from MSKCC radiology, apparently.

Annals of fatherhood

Little B., upon my half-feigned, half-genuine complaint that he checked a boring non-fiction book out of the library for us to read rather than a good story with swords and heroes:

"I like facts, you need to learn them. You can read this book to me and study and, that way, if you get better you can become an oceanographer and we can move to California and live in a house close to Grandma and Poppa and visit them often and go to Krispy Kreme."

Facts! Hell, naw! Now, more than ever, I want stories. 

And I don't think that oceanography is a plausible way for me to return to professional life. 

But the sunshine and doughnuts sound good. 

Wild child

Josh is on a roll lately.

His post about a painful complication struck while removing a chest tube resonated, er, deeply with me. (You could say it tugged on something in me.) He writes, "It would have been somewhat comical if it didn't hurt so damn much. I did feel macho the way the doctor complimented me on my pain threshold (even as I sucked on some fentanyl). Inside I was crying, though. Sometimes the big things like the amputation or enzymes flushes into my lungs don't get to me as much as something minor that should go a lot smoother."

I want to say something serious about this later, free of tasteless jokes, in context of trying to explore hospital-related post-traumatic stress disorder. There's so much truth in that last sentence. For now, though, one thing that stuck with me about Josh's story and some of my own experience is how personal this kind of agonizing snafu starts to feel, about how you sort of move from an odd sort of disembodied remove from your own body to suddenly having the latest disaster or discomfort tie into every grievance in your life. Every disappointment, every shortcoming, every failure, every loss. It's such an overwhelming sensation, it doesn't make any rational sense, and yet there it is. There's a reason why doctors call injuries and illnesses "insults" and "complaints."

The temptation as a sick adult is to want to revert to childhood; you develop such an agonizing longing to give up all agency and just be cared for, a desire that is often completely at odds with your adult responsibilities and is certainly at odds with the complex process of self-assertion and effort needed to optimally manage a complex and rare disease.

This hunger to regress may be why so many of people dealing with cancer are so sensitive when people talk about how we are "so brave" or they "admire us." You don't feel brave because you didn't choose this and wouldn't choose it in a million years, and inside of you there is a hurt child that wants to drop everything and be held.
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Maybe this should be a separate post, but I had a less teary riff responding to another part of Josh's post. In the dark way of a sarcoma patient, I felt some bitter amusement at Josh’s experience with dialing an alternative cancer-care center:

Finally, as we're at this turning point and trying to find what's next, I thought I'd give Seattle Treatment & Wellness Center a try. They bill themselves as the place to turn when conventional treatment fails. But I didn't see it as some hocus-pocus alternative either. Good people have told me about them and I know from reading their literature that they combine traditional chemos with naturopathic remedies. So I called and left a message detailing my disease, where I'm at, and that I'm turning to them because I'm low on options. They phoned back pretty quickly and basically said, 'we can't help you.' Epithelioid sarcoma is so rare that they'd send me back to SCCA. Oh well. Kim laughed when I told her I got no hope from 206 FOR HOPE. It was worth a laugh at least.

Starting with, "You know it's bad if you get no hope from (206) FOR-HOPE," I started writing "you know it's bad" riffs...

You know it’s bad if Mother Theresa is too depressed to pray for you. 

You know it’s bad you send alternative medicine people looking for alternatives. 

You know it’s bad if Dick Cheney starts sounding encouraging. 

You know it’s bad if even Barack Obama lacks the audacity to hope on your behalf. 

You know it's bad if you start hoping "you're too big to fail" and looking for stimulus.

You know it’s bad if… you can't laugh with your wife.

Icing on the cupcake

I don't come to bury the pastel-toned cupcake shops. The beautiful racks of puffy frosting! The quaint curtains! The beadboard! I say yes yes omigod yes.

But there are problems. 

Many of the cupcakes aren't very good.

A cupcake presents different surface area and timing issues than, say, cake. I suspect that parsimony plays a role, as well, at least in some dry and flavorless commercial efforts. L.'s cupcakes, made from a buttery birthcake-recipe base, are excellent. Sometimes the cool New York City beadboard bakeries lack oomph in the flavor and texture department. Corby Kummer elaborates below, adding a nuanced contribution to the debate that starts with the proposition that icing is paramount:

And best is the simple icing that for many people evokes childhood: butter beaten with confectioner’s sugar and milk and vanilla, light-textured and creamy but with a satisfying snap when you bite into it. Because this icing, when made with shortening, says “cheap supermarket cake” to artisan bakers, they shun it.

New York’s Magnolia Bakery, which used this icing to launch the craze, gets it right—but its cake has almost no flavor, as a blindfolded tasting with my 14-year-old niece proved. Neither of us could tell the difference between vanilla, chocolate, and red-velvet cake, which to be fair never tastes like anything—it has a bit of cocoa and a lot of food coloring, and seems to be popular for its usual cream-cheese icing. And all the samples, though fresh, were dry. (When people say that homemade cupcakes are always better, they generally mean fresher. Most homemade cupcakes start with a mix.) Buttercup, started by a disaffected Magnolia founder, had much better cake but less-interesting icing, and better than both was another Magnolia offshoot in the city, Sugar Sweet Sunshine.

Obligatory cancer tie-in: There is an outpost of Buttercup within easy walking distance of Sloan-Kettering on 2nd Avenue. Kummer helpfully points out that most cupcakes have fewer calories than, say, a disgusting and overpriced Starbucks muffin. Let us eat cupcakes!

Nar-can-do

The pain got its hooks into me bad over the weekend, and so, after a sleepless Saturday night, I slapped on a fentanyl patch before T.'s birthday party. (It was not the prospect of her friends that drove me to narcotics, I swear.) 

I discussed the move with my doctor on Monday, received a prescription, and I will be using the patches for the foreseeable future. This has some downsides -- during my previous stint using this medication, I quickly became physically dependent on the drug, so much so that if a patch slipped off accidentally, I would soon start feeling sick and nod off -- but offers the powerful lure of being able to sleep and function better. 

I was feeling pretty good about the decision, then I read an article titled F.D.A. to Put New Restrictions on Narcotics:

Many doctors may lose their ability to prescribe 24 popular narcotic medicines as part of a new effort to reduce the deaths and injuries that result from these medicines’ inappropriate use, federal drug officials announced Monday.

Cut to an exaggerated Jon Stewart "oh-oh" face here.

Hundreds of patients die and thousands are injured every year in the United States because they were prescribed drugs like OxyContin or Duragesic inappropriately or they took the medicines when they should not have.

The toll has worsened in recent years, with the blame shared among doctors who prescribe poorly, patients who pay little attention to instructions or get access to the medicines inappropriately, and companies that have marketed their products illegally.

...

Cut back to Jon making his horrible news face.

But many doctors prescribe the drugs far too cavalierly, Dr. Jenkins said. For instance, most are intended for use only in patients suffering severe illness — like end-stage cancer — who have already become so acclimated to opioid therapy that they still are in pain.

The F.D.A. has received reports, however, of patients suffering from something as simple as a sprained ankle being prescribed such medicines, Dr. Jenkins said. In such patients, the medicines can be dangerous.

Ugh. While this is probably a wise move from a public health perspective, I feel like it feeds some of the counterproductive ambivalence patients and even health care providers have about these drugs. I, for example, am not particularly acclimated to opioids. It's just that low doses of dilaudid, which have about three hours of active life in the body, are a poor match for chronic, grinding pain. My only hope for relief right now is taking some sort of stronger, extended-release narcotic and dealing with the attendant downsides. Don't stigmatize me! I agree on one point, however: Any doctor prescribing this stuff for a sprained ankle is a jackass.

T. is five!

In celebration of the Naughty Girl's birthday, I purchased some bacon to go along with her sausage and wrote the following for an audience of pre-schoolers, which hopefully justifies the prose style:

T'S BIRTH STORY

By

HER DADDY

T's Mommy has gotten to tell her birth story at school every year since she was one. 

Now that she is five, and a preschool leader, and this is her last birth story at XXX, I thought I would tell the story I saw, because I was there, too, even though there was no T. in MY tummy, only old peanut butter sandwiches and cookies.

I knew T. was ready to be born because her mommy’s tummy was very big and she had to waddle like a duck when she walked and her back hurt so much she couldn’t sleep. The doctor told us it was almost time, too. But I was still surprised when T.'s mommy said that she had begun to leak water. (Before you are born, you are in the tummy in a warm water bath. When you are almost ready to be born, the water starts going down the drain.) The water sloshed and sloshed out, like juice jumping out of a too-full cup that you are trying to take upstairs. 

We were very excited. The doctor told us to come to the hospital, but we didn’t have to hurry. So we ate dinner with T.'s brother, who is also known as the B. Man, and we took B. Man to his friend’s house and we went to the hospital. When we got there, they checked T.'s mommy, but nothing happened for a long time except the sloshing and the dripping of the bathwater. We sat and sat and it got very late and we got a little bored. We had been so excited, but now it was the middle of the night and there was no T.! Just a leaky bathtub and wet towels!

The doctor told us that she would have to give us medicine to make T. come out in the morning. But after waiting so long, we decided to take the medicine a little early. We were impatient to meet her!

The medicine worked really, really well. There was a POP! And T.'s mommy’s body started rumbling to open up a door for T. to come out of! But the medicine they gave T.'s mommy to stop the owies didn’t work at all. They gave the wrong kind because that’s what the little doctor, who had never had a baby before, thought was best. I felt very bad that I was so excited and nervous I forgot what the good medicine was called. The owies got worse and worse and worse and we were angry with the silly little doctor, but there was nothing we could do. It looked like T.'s mommy got hit by a train. She was breathing hard and turned red and had to yell a lot and stuff.

I was scared that it would take a long time for T. to come out because she had been such a shy little baby, but her mommy actually pushed her out very quickly. Too quickly: She did in minutes what you normally do in hours, and hurt really really really badly. I even cried because it was hurting her so much. It seemed like forever until T.'s bald head poked on out of her mommy. When I first saw her face, I thought she looked like her Nana, because she was a little wrinkly. She also looked funny, because she had no clothes or PJs or ANYTHING! (We are all born naked, don’t laugh.) Then I thought she looked like her Mama because she was so beautiful. She was still hooked to her mommy with a big, stiff, purple body cord that went to her belly. I cut her loose with a big pair of scissors, as easy as cutting rope. And then she got cleaned up and wiped down and got her first blanket and hat and started to have a nice long nurse, and began to look like her own pretty self. 

A little later, when T.'s mommy started to hurt less, all she wanted to do was hug and cuddle and nurse the baby T. and hold her close, and that’s exactly what she’s done, ever since.

And hugging and cuddling baby T. was what I wanted to do, and what I have done, ever since.

And when I got up early in the morning and picked up the B. Man and took him to meet his little sister for the first time, all he wanted to do was hug and love her (and play with the automatic hospital bed), and that’s what HE has done, ever since.

And that’s one story of how T. was born.

Food of the heart

This photograph, which I lifted from a blog post by the wonderful food writer Michael Ruhlman, depicts a peanut butter-and-cabbage sandwich, one of his "staple meals." 

"I don't remember exactly when I began eating this oddity," he writes, "but it was more than a decade ago and I've been lunching happily on peanut butter and cabbage sandwiches during the week ever since."

I honestly don't know where to start with this -- even looking at the picture makes my teeth ache -- other than to say that I, alas, am not likely to start going through "several pounds" of raw cabbage a week. But the idea of staple meals -- and how those staples change or stay the same over time -- interests me a lot, especially now that I have cancer. 

The tumors and their treatments have completely distorted my palate. I used to love spicy food; now I can barely tolerate it. For a long while, I shunned coffee and red wine and sought out... er... Big Macs. The Micky D's is over now, thank god, and coffee has returned, though I now take it with half-and-half instead of black. High-alcohol red wine still tastes intolerably hot to me, and even slightly jammy wines (the simpler, less-expensive reds L. and I buy for weeknights) seem unpleasantly sweet when I catch a whiff of them in the glass. During one bad period, when I was bottoming out at about 130 pounds including fluid weight, I subsisted largely on ice cream. During another period, ice cream was intolerable. Chocolate chip cookies are a constant, however.

Sometimes food has seemed like an obstacle, a necessary evil to maintain my strength, and at other times, it has been a huge pleasure and distraction from the illness. I'll never again have as simple relationship to my appetite as I once did (the new me is picky, the old me's motto was "Hungry. Eat"), but some appetizing themes have emerged over time. If I can swallow anything, risotto seems appetizing. Cheeseburgers, especially great ones, almost always call to me. Sometimes scrambled eggs work, sometimes they don't. Bacon, I confess, usually sounds good. Grapes and carrots usually work pretty well.

An food that summons me again and again, even though I cannot prepare it for myself, is my dream of the perfect omelette. Rolled in thirds instead of folded in half, soft in the center, filled perhaps with a little gruyere, a perfect omelette is so often what I crave. Call it a staple of my mind, if not my table.

Brivanib hasn't had much effect on my eating, other than a diminished appetite and the black pepper issue. But I'm taking some antibiotics right now that require additional mindfulness about what I eat and when I eat it. That has left me hungry a fair amount of time, dreaming of omelets. My response is a minor resolution for myself: Learn how to turn out a perfect omelette smoothly and consistently. It's harder than it looks -- classical French chefs sometimes make aspiring apprentices cook an omelette as part of a job audition -- but I'm confident this aspiration, at least, is within my reach. I'll let you know how it goes.

Put a lid on it

Just because: There is a group on Flickr titled Aretha Franklin's Hat. It has 265 members. If you were impressed at the inauguration, I suggest checking it out...

A moment

The house was suspiciously silent, so I went searching. After all, the last time I noticed the sound of silence around here T. and J.P. had snuck contraband ketchup upstairs and were industriously applying it to a framed photograph. No such disaster this time. I located B. immediately and found him... engrossed in his reading. 

I was struck by that the way any parent would be -- struck by the passage of time and the flowering maturity of my child. But the moment hit me in another way. When I was diagnosed with cancer two-and-half-years ago he couldn't read. T. was two. The calculus I made then, the one I make now, was, "If I can hold this thing at bay for a year, that's half her life." 

Every good month, every year of quality, is precious to us fully grown folks, of course. You don't need kids to value life (in fact, some might argue...) But children add urgency to those calculations. Even six additional months is meaningful percentage of their lives. It's enough time to see change; a new steadiness, perhaps, a more refined skill, a broadening of empathy and compassion. 

And so I fight. Even at a despairing moment like this one, I fight. I fight to see a little more of the story emerge.

Public-service pills

I've been dealing with more pain for a couple of months now, with a significant spike even over the last couple of weeks. In the process of trying to find a combination of meds that will give me better relief, a couple of doctors have mentioned oxycontin. Quoting Amy Winehouse's words (but inverting her intent), I've been replying, "No! No! No!" 

But maybe I should soften that position in service of public health. 

Andrew Sullivan points to a write-up of a study that indicates that as the increased popularity of oxycontin, percocet, demerol, etc., cuts into the demand for heroin, there may be public health advantages, as prescription drug abusers don't typically inject drugs and usually acquire a fix by faking out doctors rather than engaging in street crime.

*

Why am I reticent? I believe in aggressively managing pain, but I also fear dependency, even though I know that I can kick. Perhaps more salient, I have had terrible luck with percocet (horrible itching) and extended-release morphine (headaches, vomiting). So right now I'm hanging in with diluadid, though I'll give the Big O a shot if the pain gets any worse.

By the way, I'm joking here -- at least about the "advantages" of prescription drug abuse. It's horrible.

The wit and wisdom of a naughty girl (part 3 of a 586-part series)

Little T. has a date.

This would be trouble in any case, being as she's not quite five, but it's even more problematic because she is having dinner tonight with her preschool teacher. They are going to sew a punching bag together. The idea is that "five is too old for tantrums," so they are going to make a ghost for T. to vent on. "I wouldn't want to hit anything nice," she said, filling me with relief.

This morning, discussion continued about the much-anticipated fifth-birthday festival due to begin this Friday. I came upstairs to help her get dressed and I heard a strange chant. 

"Bacon AND sausage! Bacon AND sausage!"

Like her brother, T. wants a birthday dinner comprising eggs, biscuits and a breakfast meat. Or, rather, in a departure from her less ambitious brother, two breakfast meats, hence the chant. When I arrived, she varied the theme, "Two meats! Two meats! Two meats!" The total ludicrousness of a little girl flopping around in her purple duck panties and refusing to move in hopes of a future double portion of saturated fat kind of tickled me, I have to admit. It quickly grew tiresome, however, especially as attempts at reason -- would you eat chicken nuggets and a cheeseburger? -- failed. Eventually she tired of the game and got dressed. I still don't know if we're having bacon or sausage.