Brivanib

Starting to get -- excited isn't quite the word -- but I'm getting something about going down to New York at the end of the week and beginning my pre-screening (CT, blood, EKG) for the brivanib trial. As I've whined to L. more than once, not being in treatment when you know your tumors are growing really stinks.

I had hoped to post something smart about why brivanib might work and how it takes a different angle on things than the drugs I've already had, but somewhere in the haze of VEGFR and FGFR I lost confidence in my ability to figure out what the hell they are talking about and communicate it lucidly. So we'll stick with the basics: Tumors need blood, brivanib hopefully kills the vessels that feed them. This can cause a variety of nasty side effects --including high blood pressure, which I'm already on the verge of struggling with because one of my kidneys is swollen and sending my body all the wrong hormones, but it's all good. I'll deal with whatever I have to deal with when it happens.

In encouraging anecdotal news, I see that Elsa achieved stable disease (retroperitoneal sarcoma) after I believe six weeks on the trial, as did a friend of hers and as did another sarcoma blogger. Michelle of Peace, Love, Cancer describes it this way (I was particularly struck by the "walking zombie" side effect part -- Dr. BT didn't mention that!):

My Scans came back with wonderful results. The Brivanib pills are working! My tumors are stable and haven't grown since my last scan! One tumor in my lymph node has actually died! There is no blood flow to the tumor! This is the best news I could get. My doctor is so happy with these results.

I will be on the pills for 12 weeks. After that I will be given either a Placebo or continue on the pills. Because it is a trial it's a 50, 50 shot that I could get the Placebo. Booooo! I will know right away by how I am feeling. The reaction happens within 15 minutes after I take the pills. I am a walking zombie. If I do get the Placebo, I can then go back on the trial.

A Death. Ghosts. Obligations.

She was a nursing student, pale and slight, swallowed up by her oversized dark green scrubs, but what I remember about her the morning the man died in my hospital room was the way she rushed in to take his hand, and her keening near-shout when he was dead or near it: “You are NOT alone.” 

A lie, but a beautiful one.

I never saw his face. I did hear his voice, and it was gentle and cultivated. You could tell that, as muffled and distorted by the ravages of disease and dementia as it was. When they asked him some questions to assess his mental state, he spoke in a bare whisper, summoning the date, and then, with some struggle, the name of the hospital (though he used a version of it that has been obsolete for 30 years). He said he wanted help later so he could call his son. Then they gave him a little morphine to slow down his heart rate and, instead, the drug stopped his heart. It happened so fast, they couldn’t get me out of the room, so I was privileged enough to witness the end of a life.
*
Not so much recently, but early in the illness, after it became clear how the story was eventually going to end, I would imagine fantasies in which the story did not end, in which part of me remained to watch and help my wife and children as they made their way through life. I couldn’t – can’t – bear to imagine them going through the struggle without me, so I would sometimes catch myself conjuring ghost stories in my day dreams.

But it is the living who must embrace ghosts. From Scientific American Online:

The dead stay with us, that much is clear. They remain in our hearts and minds, of course, but for many people they also linger in our senses—as sights, sounds, smells, touches or presences. Grief hallucinations are a normal reaction to bereavement but are rarely discussed, because people fear they might be considered insane or mentally.

One study, by the researcher Agneta Grimby at the University of Goteborg, found that over 80 percent of elderly people experience hallucinations associated with their dead partner one month after bereavement, as if their perception had yet to catch up with the knowledge of their beloved’s passing. As a marker of how vivid such visions can seem, almost a third of the people reported that they spoke in response to their experiences.

...

Only a minority of people reading this article are likely to experience grief without re-experiencing the dead. We often fall back on the cultural catch all of the “ghost” while the reality is, in many ways, more profound. Our perception is so tuned to their presence that when they are not there to fill that gap, we unconsciously try to mold the world into what we have lived with for so long and so badly long for. Even reality is no match for our love.

*

I often think that is the obligation of living to care for the dying, to keep them warm and rub their feet and moisten their cracked lips, to tell them true and loving things and smooth their passage from this terrible, beautiful world. 

I often think this, but it is wrong, at least in part. It is perhaps more true that we the dying must care for the living; we must ease regrets, soothe hurts, and build bulwarks of memory and love to offer some protection against the terrible, pressing absence ahead.

Emilie

A great friend and teacher I never met died of a sarcoma yesterday holding the hand of her beloved. I will miss you Emilie Lemmons.

*

I have gotten so many things wrong since I became ill, but one thing I got right, I think, was the question. Instead of just asking myself, "When am I going to die?" I have tried to ask, "How do I want to live?"

If you are here because you have been diagnosed with a sarcoma, you could do far worse than read Emilie's brave, eloquent writing to further the work of answering that question for yourself. 

Pensées

My thoughts, arranged in alphabetical order by subject and including daily frequencies (with apologies to Nicholson Baker for shamelessly stealing his joke):

B., life-affirming love of (14 times)
B., annoying and draining nature of (4 times)
Cheese, tastiness of (1.3 times)
Christmas presents, paucity of (6 times)
Christmas presents, bankruptcy-inviting quantity of (4 times)
Death, mine (17 times)
Dogs, glory of (2 times)
Epithelioid sarcoma, treatments and solutions for (6 times)
Epithelioid sarcoma, shittiness and unfairness of (11 times)
Golden Bears, California (4 times)
Homework, hatred of (1 time)
House, disorder of (2 times)
House, beauty and coolness of (3 times)
Job, story of (.6 times)
Lakshmi, Padma (2.1 times)
L. (36 times)
Loss, as fundamental condition of life (12 times)
Marijuana, as possible coping mechanism (1.7 times)
Meaty braised olives, incredible glory of (1 time)
Obama, Barack (4 times)
Shouting (others), unpleasantness of (3 times)
Shouting (own), cathartic nature of (2 times)
T., life-affirming love of (14 times)
T., mystery of how she transformed from beautiful baby into psychotic, infuriating hell-child (5 times)
Tacos, fish (1 time)
Undergarments (women’s), lacy and slinky appeal thereof (1.5 times)
Vicodin, potential administration of (2.5 times)
Wittgenstein, Ludwig (.002 times)

Temperature

L. has always had a soft spot for Jimmy Carter, and I guess I do, too, because I take a great deal of pride in keeping the thermostat low when I'm here in the house by myself. It's true: A sweater, a blanket, a pair of fuzzy socks can work wonders and save big bucks.

But 58, 58 in the warmest core of the house where the thermostat is -- well, 58 is too cold. I am typing to keep myself from shivering. Baby, it's cold inside.

A proposition

A good life is enriched by good tomato sauce.

I've gone through a million different ways of doing it, from a base of diced carrot and onion and a bunch of spices, to a base of onions and garlic and less spices, to ever simpler variations. My current favorite, which distills the sauce down to its very essence, is about as easy as it gets:

Pour a lot (a quarter-cup, say) of olive oil into a saucepan and begin warming it over medium-low eat. Peel and bruise (with the flat of a knife) three garlic gloves. Place them in the oil and let them simmer, warm and infuse. Get a big can of San Marzano or Muir Glen whole tomatoes, and tear them up with your hands and place them in the pot. Dump in the juice, too. Add a big hit of salt (this is crucial). Raise the heat a bit until you hit a boil, then back it off until you're at a decent simmer. Let it concentrate and reduce until it no longer looks quite so liquidy -- maybe a half hour so? Finish with a glug more of olive oil, salt and pepper as you like them, and maybe red pepper flakes if the sauce is over-reduced and sweeter than you prefer. (A little red wine or a tiny bit of vinegar can also help you achieve balance.) Fish out the cloves, then serve.

Variation 1: Cook about a quarter-pound of pancetta in olive oil in medium heat until it crisps up a bit and renders its fat. Remove it from the pot. Add a chopped shallot or two (or half a yellow onion) and cook until it softens. Proceed as above, perhaps with slightly less olive oil since you have the pancetta fat. Finish as above, adding back in the pancetta and a good hit of red pepper flakes. Serve with penne.

Variation 2: Reduce the sauce with a few basil leaves in it (fish them out before you serve) for extra perfume.

Bonus cooking-mojo tip: This recipe dresses a pound of pasta adequately. Remember, you don't want your pasta swimming in sauce. If the sauce is too thick, you can thin it out a little by nabbing some of the starchy pasta-cooking water from the pot and stirring it in. This supposedly helps the sauce and pasta harmonize.

Survivor

Insert your own Rocky/"Eye of the Tiger" joke here. I was going to, but, as it turns out, I got nothing.

Just a word. Below, I described Josh as a fellow "epithelioid sarcoma survivor." Writing that felt a little weird, actually -- I am sorry to say that adjectives like "sufferer" or "victim" make more emotional sense to me personally, but I didn't want to characterize another person's experience.

The truth is that a lot of cancer survivor culture pisses me off. I mean, I'm really glad if you've beaten cancer, and I can imagine the lingering dread, but I just can't feel too much of your pain; I only wish for a big hit of survivor angst. If that's a problem, give me problems.

A wise person I know, though, described a cancer survivor as anyone who is living with the disease. You don't have to have clear scans for X months or a great prognosis or whatever. I love the note of defiance and hard truth in that formulation, and I think I am going to strive to feel it. I'm a survivor.

Why didn't I think of that

via Boing Boing, city workers in Ankeny, Iowa are spreading garlic salt (a local factory donated 18,000 pounds) on roads to help melt the ice. From the AP:

Olson says the city mixed the garlic salt with regular road salt and it works fine. He says some road workers say it makes them hungry...

An assignment of sorts

Inspired by fellow epithelioid sarcoma survivor and all-around interesting guy Josh, I spent a few hours the other day drafting an "ethical will" for B. and T. The idea is to write a document that serves as a kind of inheritance for your loved ones -- but an inheritance of ideas and values rather than material possessions. 

Ethicalwill.com describes them as a sort of love letter to your family; a way "to share your values, blessings, life's lessons, hopes and dreams for the future, love, and forgiveness with your family, friends, and community." There's no set format, and the examples on the site are all over the map, so I spent some time sharing with T. and B. some of my thoughts and observations about life. 

I thought it might be weird, but it wasn't. Although I produced an initial flurry of letters and thoughts for L. and the kids immediately after I got sick, I have been far more reticent lately. As I got sicker and more worn down from treatments, I became less willing to voluntarily grapple with my death in that way. Silly, I know; but it's how I have felt. Drafting the will turned out to be fun and intensely meaningful, however. It didn't feel morbid, perhaps because I have a promising treatment ahead and am feeling OK-ish physically.

So here's my suggested assignment to you, my readers, both the sick and the well: Sometime before the end of the year, write a letter to someone you love sharing things you wish to share with them. (L. used to write an annual Christmas letter to B., which was a wonderful idea.) Hopefully and probably no one will read it for decades -- though I don't see any reason why you couldn't share it at the right time while everyone is still around. Don't get all Flaubert about it. Commit to sitting in front of the computer for 15 minutes. Sit there and write the first sentence. Then write the second and the third. It doesn't have to be perfect. You can say anything. You can write another letter to amplify the first, so don't think you have to get it all down perfectly in the first shot. Just write something. It matters. 

I'm actually a little worried that my document reads like a unfortunate cross between All I Really Need to Know I Learned in Kindergarten and Life's Little Instruction Manual, but approaching the writing in a somewhat light way was the trick I needed to help me say some of the heavy things that I wanted to say. Anyway, here's a little snippet of what I came up with. Maybe it will trigger something in you:

MATTERS DEVELOPMENTAL

I like to think of myself as a pretty good person, reasonably well-adapted and happy, but you’ll have to trust me that much of my early life was a train wreck.

...

I myself acted out horribly in school for years, causing many unnecessary problems for myself and others.

I was a terrible nerd. Fat, carbuncular, possessed of awkward clothing and demeanor, consumed at times by despair and solipsism.

But I grew out of it, you know. And even at my unhappiest and least attractive, I was reading, thinking and engaging with my (very few, but high quality) friends.

Change can happen so suddenly. I started ninth grade, and everything was different. Over the course of less than a year, I shot up about a foot, going from pudgy to slender, bought new clothes and adopted a new hair style, traded my glasses for contact lenses, got my braces taken off, etc. These external issues didn’t fix my problems, but they did relieve them. Skateboarding helped, too. Remember that the eccentricities and interests that make you geeky in school, especially junior high school, often prove to be highly adaptive in adult life.

Yes, transience. Even now when I am facing the terrible prospect of losing my beloved wife and two beautiful children to a horrible, painful, humiliating, creeping disease, I still find that the most visceral despair I have ever felt I felt in my adolescence and teenage years. Seriously. Heed that for a second: I am honestly telling you that growing up is harder than having cancer. Heed this as well, it’s even more important: Many of the problems I suffered the most over simply did not matter. I don’t even remember what they are now. Repeat to yourself over and over that this too shall pass. I hope that I am not making light of how difficult this time of life is – remember, my guts shrink even now thinking of the many and varied agonies of junior high and after – but time and perspective are crucial friends.

Your mom knows more than you think. But she makes mistakes, also. Forgive her and love her. Fate cheated you out of your dad; don’t cheat yourself out of your mom.

Value family. It has sustained me my entire life; first my parents, then your mother and you two.

I am so sorry I have to leave the two of you. I love you so much; I fight and fight and fight to live to be with our family.

You are eventually going to be fine, I swear it. I know you both, my little darlings.

Annals of theology

A Christmas story of sorts:

Little T. and I are sitting on the floor of her room, spinning out elaborate pretend-play scenarios, when she suddenly looks up and sees the fairy costume hanging in her closet.

"Look, it's a fairy princess of God!"

"A fairy princess of God? Is that like a regular fairy princess, or is it a special kind?"

"It's a special kind!"

"What is God, anyway?"

"It's where Jesus lives! And you know that! From your logical studies!"

'A randomized discontinuation study'

I'll admit it: I felt a little smarter just typing that. I mentioned (threatened?) earlier that I wanted to say a little bit about the brivanib protocol, because it strikes me as interesting and somewhat unusual. I barely have any experience at all with clinical trials, and I've already learned an obvious yet somehow counter-intuitive point: The trials aren't designed to help you. They are designed to bring safe, effective drugs to market as quickly as possible. If they help you, that's great, but it's not the primary goal.

Anyway, the study works like this: You get the drug for sure for 12 weeks. If your tumor grows, you're out of the study. If your tumor shrinks more than 20 percent or so, you stay on the drug for sure. If your tumor remains essentially the same size, you are randomized into a double blind, placebo-controlled group. You may get the drug, you may get the placebo (ugh). If your tumor grows, they unblind the study to find out whether you are receiving brivanib or placebo. If your tumor grew on the placebo but was stable on the drug, they will switch you back to the drug. The protocol requires scans every six weeks, so it looks to me like the time off-drug could be relatively short.

My wicked, wicked ways

Two examples:

1) Toys 'R Us gives me hives and yet... every time I try to get out, they pull me right back in. I made my way over there yesterday in the hopes of filling in a last couple Christmas presents and saw a car with several bumper stickers espousing views I find despicable. Apparently intending to shame an inanimate object for carrying perfectly mainstream political messages, I decide to raise my middle finger at the bumper. The lot is crawling with toddlers. I sheepishly furl the finger and slowly make my way into the crowded, denuded store through the vestibule that always smells like stale cigarette smoke.

2) I'm making dinner, and T. is hungry. She expresses this by saying "I'm hungry I'm hungry I AM HUNGRY I'm Hungry I'm Hungry I'm Hungry I AM hungry Hungry..." The only thing missing from the prison riot was the tattoo of tin cups being banged against bars. I'm trying to finish the cooking as my blood pressure is redlining, and finally I throw some food on a plate and say, "Ok, T., it's ready. Come to the table [undertone] you little jerk." Later, of course, both children were so unbelievably cute and charming that my heart split open.

ES in the news...

Google Alerts turned up a rare new mention of epithelioid sarcoma in a University of Michigan press release:

One day Gisele Bigras was a college student finishing up another year of school. The next day, she was a cancer patient faced with having one of her fingers removed.

The diagnosis: epithelioid sarcoma in her middle finger. Bigras, 19, was in a state of shock and panic. But music brought her back.

"Music has always played a huge part in my life. Music therapy helped me focus on something else other than the traumatic events of the cancer diagnosis, and just forget for an hour or so, to just go into a different world for a little bit," Bigras says.

Get well, Gisele.

Back from NY

We went down to New York at the end of the last week to consult with Dr. Bow Tie (red for this visit, and askew) about clinical trials at Sloan-Kettering. 

The options we were offered were the brivanib trial (an oral anti-angiogenesis drug) and a phase I of an mTOR inhibitor (everolimus) combined with cisplatin. It turned out that the phase I was filled -- so brivanib, here we come. 

We need to fight with the insurance company -- unlike Ariad, the drug company for this one is not footing the bills for doctor visits and scans -- and do a bunch of screening tests. I'll be in New York again on January 2, and will continue with weekly visits for about six weeks. After that the visits will be every three weeks. The brivanib trial has a pretty wild protocol that allows for a placebo control while minimizing or eliminating time spent off-drug if the agent is helping. Alas, I'm too tired to get into that right now, so you'll have to wait for the next exciting edition. The trips will be expensive and, probably, difficult, but being in New York City weekly is sort of a dream come true for me, so I'm trying to emphasize that part of it and ignore the fatigue and money. 

Amusing, semi-classic Dr. BT moment from the trip: He and his fellow were apparently eyeing my lungs with some concern and disbelief, so he ran upstairs to consult with a thoracic surgeon. I have my issues with Sloan, but the multi-disciplinary teams and intense specialization of the people there is one of the cool aspects of the place. Anyway, he comes down and says the guy thinks a chest tube might be worth a shot, and maybe VATS on the left side if the tube can bring the lung up successfully. We then have this exchange, abbreviated only slightly:

"He has concerns about you flying."

"I admit that it's occurred to me that I might throw a PE or something."

"No, no: It's the pressure differential. How did you get down here?"

"Uh... I flew. Should I be concerned?"

"Well, you have to get home."

*

As always in NY, there was some room for joy. We ate here, like always, and nearly missed our flight (despite arriving at the airport two hours early) because of an ordering mishap at the new tapas bar that led to us receive one-and-a-half liters of sangria rather than a half liter. You know, we couldn't waste it. So L. and I ended up charging off together, hand-in-hand and half-stumbling, to the closed gate. 

It's kind of cool that I can stare my mortality in the face for two years, survive an untold number of physical and emotional traumas, and still manage to be the same immature jackass I've always been. That's talent.

*

Bonus post segment: The wit and wisdom of a naughty boy (part one of a five-part series): 

"B., are there any new clothes you'd like for Christmas?" 

"Yes: a tuxedo!"

The wit and wisdom of a naughty girl (part 2 of a 586-part series)

Me: "Oh, T., you're such a wonderful girl!"

Her: "That's an urban legend." (She seriously said this. She's four.)

Department of Awkward Conversations

Things I've never quite had the nerve to say when the wrong person asks me, "So... how are you doing?":

I'm rocking, except for the fact that my body is collapsing all around me.

Cancer is a great teacher. I now understand the impulse behind suicide AND infanticide. 

[Spoken with a demented grin:] Great! [Also: "Peachy!" "Fab!" "Grand!" "Super!"]

Ah, you know, it's Wednesday -- humped back day.

Not bad for a metastasis Monday...

How about those Raiders?

Something difficult I wish I had said more the many times when it was true:

Kind of terrible, but thank you so much for asking.

What I would say right now if someone popped the question:

Kind of terrible, but thank you so much for asking.

Live weakly (the sequel)

So I'm schlumping through the grocery store this morning after a marathon doctor appointment hoping to fill some prescriptions and buy some macaroni and cheese, and I find that the pharmacy is backed up an hour or more so I won't get my scripts, and the mac and cheese is not in the spiffy organic section, nor is it in the conventional section... the Annie's now lives on aisle one, which just happens to be on the opposite side of the store. I limp back over, rueing this massive conspiracy designed to thwart and annoy me -- me, me, me! And don't even get me started on the high-priced organic coffee filters I saw: The brand name was "If You Care" (emblazoned on classily understated packaging in a lovely, Earth-friendly type treatment), and they were woven from the flaxen hair of vegan maidens or something. My thought was: No, I don't care. I DON'T care about your stupid, high-virtue coffee filters. I have cancer; piss off.

*

All this ranting is by way of introducing a resonant post from Emilie, who starts talking about cancer and strength from the launching point of a book she's meaning to read, Cancer Made Me a Shallower Person. Although this is an ongoing concern of mine -- see this post reacting to another person's smart thoughts about "living weakly" -- I can't really expand on what Emilie has to say right now, so follow the link over to her place. One little thought, though: Part of the reason I am trying lately to talk about hard things like diapers is that I believe that there is a kind of strength-in-weakness; that is, strength in letting yourself see and feel fully as many dimensions of this experience as possible, as hard and as painful as that may be. 

Once more with feeling

In the aftermath of the test, I've had the thought a couple of times that, weirdly, I have already had almost this exact bad news -- a tumorous lymph node is messing with my left kidney, some other nodes on the retroperitoneal chain are growing but not huge, and there's mysterious crud on my lungs -- before. (It was earlier this year when "gem/tax the sequel" bombed at the box office.) 

And yet... it doesn't get any easier. Whether it's the whole post-hospital PTSD thing, a grinding away of my coping mechanisms, or something else, the tests, procedures and bad news are getting harder and harder to take. And this for some reason makes me think of Malcolm Gladwell and his thoughts on practice:

This idea - that excellence at a complex task requires a critical, minimum level of practice - surfaces again and again in studies of expertise. In fact, researchers have settled on what they believe is a magic number for true expertise: 10,000 hours.

"In study after study, of composers, basketball players, fiction writers, ice-skaters, concert pianists, chess players, master criminals," writes the neurologist Daniel Levitin, "this number comes up again and again. Ten thousand hours is equivalent to roughly three hours a day, or 20 hours a week, of practice over 10 years... No one has yet found a case in which true world-class expertise was accomplished in less time. It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery."

No wonder it's so hard. I'm a piker! A neophyte! Another 9,983 hours or so and I'll handle the bad news and those long waits in the doctor's office like a champ....