unexpected beauty

Happened across this photo (and others) by Thomas Jackson. Quirky, fun, beautiful.

Cups by Thomas Jackson

Sort of like an urban counterpart to another artist, Andy Goldsworthy, who does amazing things with natural (and ephemeral) materials.

Horn (1986) by Andy Goldsworthy

Click that link for an excellent web site with photos of Goldsworthy’s early work. He does small, temporary work and monumental, more permanent creations as well. I love the descriptions of the pieces, which make it sound like he just wanders around, finding natural materials and making beautiful pieces of art, then photographing them.

Find beauty wherever and however you can.

cancer cinema 3: cancer, comedy, and cable TV

Cable TV has never been a priority for me. I’m hopelessly old school and cheap when it comes to paying for entertainment. I believe this has been a source of some disappointment to my children, but we’ve never paid extra for TV channels. Actually, we do have a basic cable deal that we pay for, but it’s because we have no choice. We live in a community with an owners’ association, and everyone here is required to sign up for the community cable deal. One hundred-plus channels are available to us, and at any given time about one-hundred-plus channels are completely useless to me.

So if there’s a pay-cable series worth watching, I usually wait for it to come out on DVD, and then I wait for the county library system to get a copy. Cheap, cheap, cheap. It’s rare that I care enough about a series to pay for it.

I’ve been meaning to review a couple of cable TV series for oh, about a year now. I guess it’s time. Then I’ll get back to writing sentimental memories that will put me back on the search engine lists for stuff I never meant to be associated with. (Really? I’m now the go-to guy for Tina the Ballerina fans? Who’d have guessed? Or worse, people looking for info about permacaths are directed to my complainy post about getting one for Provenge treatments. Oh well. I hope they’re not too annoyed.)

Today’s topics: cancer, and comedy.

You know, when your life and future get blasted by a cancer diagnosis, and you’re reeling from this impossible turn in your destiny, you’re hit with all kinds of emotions. Usually within a few minutes’ time, you can careen from panic to fear to hopelessness and anger, then cycle through who-knows-what-else before you know what hit you. As you start trying to make sense of it all, it’s a relief to find anyone who understands. You get to the angry stage, and it helps to find angry people. You want to be able to laugh about it, so you look for humor.

But cancer as comedy? Not so easy to pull off. Yes, I do need to laugh. Absolutely. I want to find ways to communicate the experience to others. And I know that I can’t begrudge anyone else’s need to express their experience through comedy. Still, you need to know that I’m a grouch, a man of a melancholy disposition, and I do not want anyone to try to convince me that happy thoughts and humor are the way through my valley-of-the-shadow-of-death experience. Especially if they’re making a career out of it.

However, comedy is a personal thing. I get that. What works for you may not work for me. And your openness to joking will likely vary depending on whether you’re in the lows of chemo or some other treatment, or in the highs of just getting good test results and feeling like maybe, just a little, you can laugh about it.

In the last two years there have been two attempts at cancer comedy, a cable series and a movie. I’m puzzled: Why is this the time for cancer comedy? What does this say about the perception of cancer in American society?

Let’s start with the movie:   50/50 opened nationally in September 2011. I heard that it was a thoughtful comedy about a young man with cancer and how people close to him reacted to his diagnosis. At least that’s what I gathered from reviews. I really did want to see this one, but, oh, I was busy dealing with CHEMO and didn’t have the energy. How’s that for irony?

50/50 just came out on DVD, and I now have the energy to give it a look. Will Reiser, the writer/producer who created the movie with Seth Rogen, went through treatment for neurofibrosarcoma a few years ago and is in remission. In interviews, he’s spoken about wanting to make a movie about the cancer experience, specifically about how strange and funny the experience can be.

So, with Rogen on board, it’s not surprising that 50/50 is a young-guy-cancer-comedy, “from the guys who brought you Superbad” (as the film’s web site boasts). Sure, but is it really “consistently uproariously funny”? (Come on, who writes this promotional stuff, anyway?) Well, at least give them credit for bringing young men into the arena of cancer cinema, which is typically a woman’s world.

To clarify that description, 50/50 is a movie about young single adult men who don’t have emotional depth, but who find themselves in a situation that calls for it. I was generally disappointed with the movie. I don’t recall any part of it being “uproariously funny” — in fact, the laugh-out-loud parts are all in the trailer, if that’s any indication. There is a fair share of gentle humor; the movie is actually quite reserved where it could have played many scenes more broadly. And then there’s Rogen’s character, Kyle, who is so out of his element but blusters through scenes doing what any clueless young guy would do: be self-absorbed, get drunk, and try to pick up chicks.

The problem I had with 50/50 is how the main character, Adam (Joseph Gordon-Levitt), seems to be part of a different movie than his buddy. The further he gets into treatment, the more he glides along in his own little world, blank, drawn inward, and oddly passive. This may be one way to show the sense of isolation that cancer survivors feel, even when surrounded by friends and family. This disconnection is a key theme, but the script and direction treat it both too subtly and (in Kyle’s case) clumsily.

My biggest reservation is Rogen’s character. I freely admit that I’ve never seen any of his movies, and I hear he plays Kyle as the same character that he’s done in virtually every movie he’s been in. Maybe it’s a generational thing (am I too old for his brand of guy humor?). More likely, it’s the explicitly vulgar stuff that keeps spewing out of his mouth, starting within about 30 seconds of his first appearance. I realize that his character was drawn this way to contrast with the obsessive, quiet, almost saintly Adam, but Kyle just became a weight dragging down the movie for me. There were plenty of opportunities to explore Adam’s experience that were left out, and too often Kyle’s overbearing presence neutralizes whatever meaning is developing in Adam’s reactions. And when there’s a subtle moment at the end where we’re offered a bit of redemption in Kyle’s role, I didn’t find it convincing.

However, I’ll repeat my earlier disclaimer: comedy is a personal thing. I suppose some people will find Rogen’s character hilarious; I didn’t. I do credit the writer for getting into some meaningful subjects, and keeping the story generally believable (the biggest lapse being a lose-your-license ethical violation on the part of a certain mental health provider). I liked Joseph Gordon-Levitt’s performance, although his passivity didn’t quite lead up to the big payoff that was obviously intended toward the end of the movie. The director kept the movie light and short, but some connection between Adam’s character and the rest of the movie is missing. On the whole, you have a deeply personal, quiet character sharing the screen with an absurdly obnoxious friend, and the resulting comedy never quite comes together for me.

On to cable-cancer-comedy: The Big C, a Showtime series starring Laura Linney as a crazy, funny, weird, out-of-control suburban mom with melanoma. The series has finished two seasons and will continue with at least a third, but due to Showtime’s no-internet-viewing policy, I’ve only seen the first season on DVD. And I’m very undecided at this point if anything about the show, other than Linney’s acting, makes it worth a recommendation.

The show’s creator, Darlene Hunt, credits the series producer with saying “It’s time for a cancer comedy.” Why, I don’t know. Could this be some weird homage to a show like Breaking Bad, where a high school teacher’s cancer diagnosis is the catalyst for what turns out to be an epic drug lord tragedy? In The Big C, we have  as the show’s premise that a formerly bland suburban mom suddenly turns into a wacky free spirit after her cancer diagnosis. And we are invited to share in the gleeful chaos as she starts acting really strange. Sadly, I’m not sure there will be any epic outcome to the series, at least not on the strengths of the first season.

Unfortunately, season 1 dragged on in an increasingly unbelievable stand-off: Linney’s character tells no one of her diagnosis, except the prickly old lady across the street, whose dog senses the truth. The situations in each episode became more and more unlikely, the whole thing feeling like a wishful hallucination, until the last couple of episodes. Then things got real, and the story could move on. It had the look of a series stuck in its own writing trap: “OK, we’ve got 13 episodes, and we have to hold off on Cathy telling anyone until the last two. So, what do you think—let’s introduce the characters and come up with some insane storylines to fill up the middle 10 episodes.” Didn’t quite work for me, but I know that some people loved it.

I’ve seen a little of season 2, and there may be hope. Maybe the relationships and Cathy’s sense of self will finally start developing into something believable. Maybe the humor will start to feel more natural and less contrived. Maybe, just maybe, I’ll stop being annoyed at the shallow social comedy and gratuitous sex, for the questionable side plots and less-than-believable characters. All these distractions, the R-rated candy sprinkles tossed onto these cable TV cupcakes, just annoy me. The depiction of oncology providers is fast and loose (sorry, but Cathy’s relationship with her young doctor is absurd). Too many characters play a single stereotype or a one-joke role. Too many situations have the feel of a real cancer story with the kind of smart talk that we all wish we had said at the time. What I find discouraging is that the stretch for comedy crowds out the real-emotion moments that make the series worthwhile. And there are, in the end, a few real moments that make me wish for more depth and less comedy.

C’mon, writers and producers, are you really wasting Laura Linney’s winsome performance with this … cancer comedy? The result is a series that feels fragmented, unsure of itself. It’s comedy, but it’s not comedy about cancer: it’s comedy about a woman who sees the world through a radically different filter, one in which mortality is looming. The series tosses out comedy as a distraction but can’t find its own soul in the process. (And yes, all this is subject to revision when I see season 2.)

What really gets me curious is whether there’s another producer quote that was never made public: “Hey, did you see that crazy Canadian series about a woman with breast cancer who turns into a brilliant reality-show star? We should do something like that.” There are no obvious connections between Terminal City and The Big C, but I can’t help wondering if there was something in the first series that sparked the second.

To rewind a little, Terminal City was a 10-episode series broadcast in Canada in 2005 (more recently picked up on the Sundance channel). It’s a satire of media producers, reality TV, and the transgressive extremes producers with no ethical boundaries will go to.  All this centers on a most human story—a woman is diagnosed with breast cancer—as the poker chip they’re all betting with. Within the restraint of only ten episodes, the show was forced to be quick, tough, and beautiful all at once, and it’s a moving, painful, even funny look at what a cancer diagnosis does to a family.

Maria del Mar is stunning as Katie Sampson, the woman pushed into the harsh lights of reality television who pushes back and becomes a media sensation as her life falls apart. There’s a strong interaction between del Mar and Gil Bellows as Katie’s husband Ari: even though they’re both set adrift by the cancer and seem to be flailing in their individual circles, they are the center of the story and are both riveting.

While it’s imperfect, the series plays with many ideas and characters in a very compelling way. Their three children have their own story and characterization that is both realistic and extreme. Some of the side stories are unlikely exercises in gratuitous sex and irrational violence. (So, in Canada, can you really depict underage sex so explicitly?)  The series feels rushed and incomplete toward the end. But it has a rich, dark comedy at its base that lifts it above some of the less believable twists.

The tricky thing with this series is that the crossover between media satire and the structure of the series is a trap: are we being manipulated by this story as we watch the characters and producers manipulate their audience? Is the poetic, edgy, beautiful side of this show just a mirror of the over-the-top show producers who are pushing every boundary they encounter as they try to capture the attention of a young, hip audience?

I liked the series. I really liked del Mar and Bellows, and I was drawn in by the unexpected poetry that would spill out in odd places. There are many moments where the camera lingers on images, allowing a mood to develop with no talky explanations or obvious connections to the story.

And there are many hit-and-run moments where you’re left wondering what just happened. How about this exchange, as Katie and her perplexed, jumpy co-host Jimmy, toss around a quick series of  free associations on Katie’s live broadcast, which is cleverly (?) titled No Show:

Katie: Jimmy Crib, my sidekick. A man who terrifies network executives because he doesn’t like to watch TV.

Jimmy: I like to touch. [reaches out to touch the desk microphone]

Katie: Yes, you do. [laughing]

Jimmy: [falls off the chair, gets up] I can walk.

Katie: Hey—Dr. Strangelove…

Jimmy: Breathe in the air.

Katie: Roger Waters, Pink Floyd… Taking Care of Business.

Jimmy: Greatest rock-n-roll song ever written.

Katie: Really?

Jimmy: It’s post-modern, it’s self-referential.

Katie: Jimmy Crib, you’re on fire!  Cancer.

[Jimmy pauses. Long silence.]

Jimmy: [sigh] An orchid. A white orchid.

[Another long silence. Jimmy wiggles his hands around.]

Katie: And we’ll be right back. Man, I even say it like a pro, don’t I, Jimmy?

Jimmy, the baffled blank slate to Katie’s beautiful No Show persona, delivers a central theme for the series, tossed out in a random moment. Cancer isn’t anything but the fragility of life, put in a container, waiting for us to interact with it. Is that ever-present potted orchid a symbol of Katie’s strength and beauty, or her fragile fear of cancer? Is it a defiant reminder of life in the face of stress and the threat of death? Is it just a beautiful image being used to lull us into watching a manipulative show that uses a human life for its own gains?

Whatever. I won’t try to answer that one. But I do recommend the series. With all its absurdities it captures a luminous view of life, love, and death that doesn’t fade easily.

letting go of cancer culture

In November, I decided it was time to scale back living in the awkward place I call cancer culture.

I gave away my red and yellow stronger than cancer T-shirt and all the CANCER SUCKS buttons that were cluttering up a kitchen drawer. I would have given away a couple other shirts but I couldn’t find them. Just as well.

I am keeping the two individually designed shirts that my daughter and wife had made for me. One is a blue shirt with huge white letters, CANCER SUCKS, that earned me a photo on a Cancer Wellness House newsletter and the cover of their pamphlet a few years ago (they photoshopped out the sentiment, and some sweat spots, and stuck their logo on the shirt for the pamphlet). I don’t wear it any more, but I keep it as a reminder of Rachel’s support for me over the years. She was standing with me in the photo that ended up on the brochure, and I figure it was her charm that led them to use the photo.

The other shirt I’m keeping is our family T-shirt for the 2011 Survivors at the Summit, with Love is Stronger than Cancer on the back. We had a lot of interest from other hikers wondering where they could get one, so maybe we should produce it in quantity some day.

That’s about the only sentiment I want to wear any more. I don’t want to wear my anger or my attitude on display in public, or wear the slightly boastful cancer isn’t for sissies shirt. And I don’t feel a need for a team identity even though I know there are many people cheering me on and praying for me. All these things have their place, but I’ve decided I want them out of my daily life.

I’ve given cancer enough attention, I think. It’s always going to be there, but there are plenty of other things more worthy of my time. I’m not sure I want to attend any more cancer events in this new year. I will keep up with the excellent Living Well With Cancer support group that I’ve been a part of for over four years. People have come and gone from the group, and it’s always good to meet new friends through it.

Of course, there are times when I miss those friends and wonder if it’s worth getting to know people who are on a terminal course. Of course it’s worth it, but in a bittersweet way.

And yes, I do think it’s ironic that my last six blog posts have been about cancer, cancer, cancer. Really, I’ve got to try something else. It’s something like the old adage that you have to keep your eyes on the goal, not the ground at your feet. Or is that you have to keep your eyes on the horizon when parachuting, because if you look at the ground you get disoriented? Hm. I do tend to get those metaphors mixed up.

The last few weeks have been tough for personal cancer news. A friend of my daughter Kate lost her sister, in less than a couple of weeks, to cancer. A 17-year-old neighbor is in the middle of harsh chemotherapy for widespread testicular cancer. Seventeen: that is just wrong. I’ve recently been reading blog updates from another metastatic prostate cancer survivor whose kidneys are failing. In the last three weeks I’ve had to medicate some serious, random pain; I’ve met with a new local oncologist (who can take care of basics when I’m not traveling to Vegas) and an interventional pain specialist (just a getting-to-know-you kind of introduction, although he won’t be doing anything for now); and will meet next week with my radiation oncologist to talk about options for spot radiation to my bones.

Cancer’s getting enough of my time: I don’t want to give it any more space in my thoughts and daily life. I’d rather be thinking about this year’s hiking season in Torrey, or where to go when our family takes off for Hawaii in a few weeks.

So, farewell to cancer culture. I don’t want that word hanging around at the edge of my vision any more.

ups and downs

Might as well start with the well-worn symbol of being in cancer treatment: it’s like that proverbial, rickety roller coaster that I remember from trips to the Lagoon amusement park in my youth.

borrowed from Shaan Hurley's Flickr page

Everything is going up and down all the time: my mood, my sense of well-being, my lab numbers. You take a steep plunge, roll back up, then level off and catch your breath, however briefly, before the next steep drop and following lift as you rattle up the tracks. The only difference between this and a real roller coaster is that you never know what’s coming around the next bend.

My December visit with the doc was not easy. The docetaxel was not doing much, so the key numbers were way up (PSA 300-ish from about 150, CTC 25 (yikes) while it was previously in the 5-8 range). My red blood cell count was way down, pain was getting in my way, I was fatigued from anemia, and so on. “In the Bleak Midwinter” was my theme song. That was a rare day when I showed signs of a new side effect, for which I believe the technical term is “crybaby syndrome”. I was just weepy. Damn, damn, damn. Cancer just wasn’t fun any more.

The doc was unusually serious, almost somber, as we talked about pain management and a few possible treatments I could change to in case the new one, Zytiga, didn’t work. Zytiga  (aberatone acetate) is similar to my first clinical trial drug, Tokai’s TOK-001 (now christened with a real name, Galeterone), so it’s possible that my cancer cells have already learned how to get around it. Possible. We wouldn’t know until I tried it.

I trudged out of the clinic, moping along to catch the bus, too tired and sad even to stop for my favorite sushi. The plane was an hour late going home, the sandwich I finally ate at the airport was so-so, I just closed my eyes on the plane and tried to sleep.

So, fade to black on that one. This week the scene is brighter. We’re now four weeks into Zytiga, and the numbers are down, and up: PSA 133,  CTC 16; red blood count up to nearly normal (from a seriously low count, although I don’t remember the numbers). It was like December never happened. I’m happy, the doc’s happy, I shared homemade cookies with the staff, did my brief TV interview, and skipped out of there a new man.

We’ll keep on with the Zytiga for as long as possible, and there’s yet another new clinical trial that will hopefully be waiting for me when the Zytiga poops out. At least that’s this week’s status. Things do change frequently. There’s always the sudden drop coming around a bend that you don’t anticipate, and your stomach falls while your head is spinning and you don’t know whether to breathe or puke or scream.

For now, I keep telling myself, just hold on and enjoy the ride.

note to self 1: when looking at a camera

In my college years, I was a radio announcer. I learned to speak into a microphone with resonant chest tones, fade music in and out, and put together crisp segues between music, announcements, and talk. I was not a compelling radio host, but I could keep things moving along.

Today I was placed in front of a TV camera for the first time. Just me with a microphone on my collar, in a cozy patient room of the clinic in Las Vegas. The story of interest is that I’ve traveled from Salt Lake City to Las Vegas some 40 times in the last two years to be treated for prostate cancer.

Why would I travel to Las Vegas? Has it been worth it? The questions were simple enough. I knew in advance the gist of what the show producer was interested in. But sadly, my brain went surprisingly blank as soon as I stepped in front of that camera. I’ve been thinking for a couple weeks about all the good things I could say for the story, and only a few of them ended up in the conversation.

So, here’s everything that I wanted to say, and a list of advice to myself if ever a TV camera is pointed at me again.

1: Decide what you want to say, and remember it. Write a list on note cards, or do something, anything, to keep yourself from going blank.

For me, the key point of my story is this: I went to Las Vegas in March 2010 to change the course of my treatment. I kept coming back because I not only got new investigational treatments, I got incredible, superlative care at this clinic. I can’t imagine a better combination of competent staff, positive atmosphere, and compassionate medical care. I feel cared for, and I feel affection for the people who are treating me. You can’t fake empathy, and when I’m there I know that there’s empathy and genuine concern for my well being — and an honest effort to come up with the best possible treatment plan.

what came out of my mouth was something like this: I was looking for a clinical trial two years ago blah blah blah two years and I’ve had effective treatments blah blah blah it’s been so valuable for me blah blah blah I feel healthy, and hope to keep trying new treatments blah blah blah.

I’m not sure what all the blah’s are, so I hope they get edited out. But really, did I just answer a series of questions and not once mention the awesome doctor and clinic staff? Must be chemo brain, or maybe the camera lights.

2: Don’t limit yourself to the questions that the interviewer asks. Fill in the details with related, important stuff.

For some reason, once the light was shining in my face and the camera was recording, I became quite literal about answering the questions as they were asked to me. Duh! Those questions were starting points. I froze up and just answered the basic questions. No creativity whatsoever.

In the future, self, please remember to elaborate when you get a simple question. Answer with more than “yes” and “no”. Again, I could have talked about how it was very much worth the travel because so many people have been there to help me out: our friends Tom and Jodi gave us a key to their brand new house in St. George and simply said, “Any time you need to stay there, just let us know.” Dorothy’s cousin Cathy and her husband John have offered us a room to stay in at their home in Henderson, any time we need to stay the night in town. They’ve been a great resource as we’ve learned the ropes of getting around and finding what we need in the Vegas area. Dorothy has travelled with me many times, and other family members have come along  on other trips to help make the long drive much more tolerable.

Did I mention any of this? Of course not, I was frozen like a deer in the camera lights.

3: Relax, but don’t relax so much that you lose your train of thought.

People kept telling me to relax, being interviewed is no big deal. I guess I took the advice too well. I was relaxed, but apparently that extended to brain function. I realized midway through several of my responses that I had no idea what I was saying. I couldn’t find my way out once I got started into a thought. So I offered a series of very limited thoughts.

One thing that annoys me about news broadcasts, especially local news, and especially dramatic stories, is the on-the-spot interviews with bystanders. I’ve always been so smug about the trivial, obvious things they say. I now have to take back all that irritation and smugness. It’s rare that the average person can say anything profound or meaningful when a camera is pointed at them. And even if they do, it may well get edited into less meaningful bits.

I haven’t seen the finished result of this news piece. I sincerely hope that Dr. V had the presence of mind that I did not have, when they put him in front of that camera. I really, really wish I could have a do-over, but that’s how it works. In the final cut, I’ll probably be saying some trivial, obvious things and looking a bit slow-witted. Oh well. The real story is there, somewhere, and I hope they get some part of it into the final mix.

Has it been worth it, traveling to Las Vegas? Absolutely.

midwinter quiet thoughts

We’ve turned the corner of dark winter days, past the solstice into the cold but gradually longer days of December and January.

Van Gogh, Snowy Landscape with Stooping Woman

This is the time of year when I like to take long walks in mid-afternoon, squinting into the yellow glare of weak sunlight reflecting on snow and icy water. I vividly remember walking five years ago in December, listening to Steve Tibbets and Choying Drolma’s album Cho as huge rounded gatherings of birds swerved and fluttered in the air above me. I was following the paved trail along the Jordan River in Riverton, at the south end of the Salt Lake Valley, where straw-colored clumps of grasses provided the only color other than white snow and brown-gray tree trunks and limbs. Those birds seemed to pull my thoughts along, dizzying as they shot between branches, then lifted as a single body into the sky and disappear ahead of me. Moments later they’d return, fluttering again, then settle down to a quiet circling around the trees that lined the quiet, almost empty river.

Five years, but so much living between then and now.

I saw my oncologist on December 20, first day of Hannukah, the day before the solstice this year. Not surprising, but disappointing, a change of plans: I’m no longer on docetaxel and have started taking abiraterone acetate (Zytiga®) instead. In the last six weeks I’ve felt a fair amount of pain in various bones and muscles, and it turns out that my PSA has doubled to around 300 and CT and bone scans are showing increased lesions in the pelvis, spine, and a few ribs. Here we go again.

We’ve had almost no snow this winter. A couple small storms in December, even though the first snows were in early October and continued into November. It feels odd, and here on the mountain people are waiting for the big snows to return. Who knows? We had record amounts of snow last year, so no one’s concerned about drought. It’s just bitter cold, nasty gray smog socked into the valleys with the temperature inversions, and now and then a small window of blue sky, like today.

Although I’m working this week, mostly from home, it’s been so quiet here at the house after the holidays. Dorothy and I both are feeling subdued, as if having a quiet break has taken us out of the rushed holiday mindset and dropped us into a cold, empty landscape where we thought we’d feel comforted and calmed. Instead it’s just calm with a hint of sad.

I’m still trying to figure out what’s going on with my health. It seems that I’ve done the best, most reliable treatments and am now entering the less certain phase of experimenting with other, possibly helpful drugs. It’s a sobering change of direction, one that I haven’t quite made peace with. I need more pathways along rivers and murmurations of starlings to move me along. Or maybe a quiet, cold red cliff in southern Utah where I can hear the sharp, shearing sound of a raven’s wing tips as it plunges through the air, dropping hundreds of feet down, playing in the empty air with its fellow raven.

Cold, wintry thoughts indeed.

yeah, chemo is that bad

There’s a reason it’s been almost two months since my last blog post: docetaxel (aka Taxotere®). Since the middle of August, I’ve had one infusion every three weeks, with a helping of granisetron (anti-nausea), dexamethasone (steroid), and diphenhydramine (Benadryl, an antihistamine that puts me to sleep in 10 minutes or less). Every six weeks, we add Zometa to keep my bones from wasting away. And then I take a mystery pill for two out of every three weeks that’s part of the clinical trial I’m on. It might be lenalidomide, or it might be nothing.

I’ve got it relatively good with this treatment. Blood counts are nearly normal, no nausea, no liver or kidney issues, and minimal hand/foot neuropathy—hopefully because I bring ice from the 7-Eleven down the street and chill my hands and feet while trying to sleep off the Benadryl during the 60-minute docetaxel infusion. I say “hopefully” because I’d feel awkward if all that ice wasn’t doing something useful.

I almost tried to ice my head as well, which theoretically would have spared my hair follicles from the ravages of docetaxel. But I just couldn’t figure out how to balance a zip-lock plastic bag, or several bags, on my head at the same time that I pushed my toes into double-bagged melting ice and held another bag of ice so that all my fingers were chilled (not as easy as it sounds—the other folks around me must get tired of that slushy, crinkly sound as I keep adjusting the ice bag so all fingers are equally numb). The end result is that I have bad doll hair: my formerly silver, gray, and brown hair, which went white during the XL-184 treatment, is now thinned, fine, frizzy white stuff that looks like worn out plastic hair on a cheap doll. I keep it trimmed very short and keep a bunch of hats handy for when it starts looking creepy.

A brand new infusion room (photo borrowed from http://www.lavinarchitects.com)

I’m not looking for sympathy when I talk about chemo. I’ve had Zometa infusions for the last couple of years, so I’ve spent time in oncology infusion rooms and have seen what chemo can be like. Some chemo treatments have to be dripped slowly for several hours (as long as 6 or even 8 hours); others require a lot more pre-medication or come with two or three different bags of liquid that have to be infused one after another. Most infusions are just clear liquids, but occasionally you see a yellow one, or a deep rusty red color. Last time I was there a woman was being infused with a creepy black liquid (it might have been an iron supplement). It’s so difficult to see frail people laying back in those big recliner chairs, trying to rest or read while they wait for hours as the solutions drip into their veins. For me, this scene is the harshest reality of cancer treatment, short of being with people in a hospital or hospice setting.

I went to a chemo class before beginning this treatment, and even after four and a half years of almost everything possible (surgery, radiation, hormone therapy, targeted drug therapy, and the crazy pheresis/infusion cycle of Provenge), it was intimidating to be told how chemo infusions work and what to expect as treatment progresses. These classes are typically taught by infusion room nurses, who are businesslike and somewhat reassuring. The night I went, there were about a dozen people in the room, including supportive family members. Several of the patients had a deer-in-the-headlights look, and many were in tears by the end of the hour. It’s just not easy to see your life change so fundamentally with this type of treatment.

Honestly, I have it relatively easy. But what I’m finding out is that “easy” is always relative. I used to wonder if other chemo patients were exaggerating or just overly sensitive. Now I’m realizing that no matter what your results, there’s an emotional reaction to whatever side effects you get. On day 15 of my first infusion cycle, I was sitting at my desk at work and idly ran my fingers through my hair. I held a dozen strands in my fingers. It was a confusing moment: I had no idea whether I’d lose all my hair or not, or how quickly it would happen, but I had a disturbing vision of leaving work that day with piles of hair on the floor. I carefully tried not to scratch my scalp or even touch my hair that day, and realized by the end of the day that it wasn’t going to all fall out at once. The next evening my daughter took some clippers to my head after shooting photos of me and Dorothy at a nearby park.

One of our last-day-with-hair photos. Thanks, Rachel!

Hair is not a high priority for me, and all along I told myself it would be no big deal to lose it. I was wrong. There’s something disturbing about pulling out your own hair and knowing it won’t grow back for now. It’s just one more thing you can’t control as you live with cancer treatment. Now that I’m more than three months into the chemo, my beard is only at about 20 percent of normal, so I finally shaved all but my thinned moustache. Another loss, and again, it’s not the loss so much as the loss of choice.

Chemo definitely has a bad name, one that feels harsh and unpleasant. That’s the traditional reaction, and it’s based on the harsh experiments and lack of supportive medication in the early days of chemotherapies. Now, many chemo treatments can be well tolerated: there are anti-nausea and steroid drugs that reduce the shock to your system, and in almost all cases it’s an outpatient process. Patients still experience immune system issues, they lose their hair, and may go weeks or months with no appetite, mouth sores, feet and hands that are tender, numb, or painful, and so on.

Docetaxel is derived from the bark of the Pacific Yew tree, which is a poison used at least since the time of the Roman empire. As with many chemo treatments, someone figured out that the effects of a certain poisonous substance, if tempered, could kill certain cells without killing the patient. One of the very first attempts at a chemo treatment involved derivatives of the mustard gas that was used to kill or maim so many soldiers in World War I. I suppose I should be grateful that I’m “only” being given a mild form of yew bark extract.

Anyway, even though I’m doing all right for now, chemo is not easy. It’s a tough challenge because results always vary. My friend from a ”living well with cancer” group, John, who had lung cancer, went through about six months of chemo and would insist through it all that he felt fine. He lost some hair (but didn’t have much to begin with), was a little more tired than usual (he did take some time off work), but he kept telling us that he really felt fine. Another dear friend that I’d met in the group a couple years earlier, Vera, suffered for months with mouth sores, fatigue, and slowed down cognitive reactions. During her treatment, and even for a few months after, she spoke slowly, searching for words, and continually swallowed and licked her lips because of her dry mouth and sores. She had about a year of remission, but when her cancer returned, she chose not to go a second round with chemo. We all saw how overwhelming it was for her, and had several discussions in our group about how you balance quality of life with extending life through treatment. What’s worse: dying sooner, or dying later with daily discomfort and confusion?

When the fatigue hits, it takes out your thinking as well as physical energy. Chemo assaults the immune system, which drains you even further. Another group friend, Barb, described her reaction to chemo as a “lost weekend”:  she could plan on just staying home Friday on weeks that she had an infusion, and said that she’d just stay in bed and “astral project” for three days. I used to wonder if she was exaggerating, but I don’t any more. I typically have my infusions on Tuesdays, and I know that at some point on Thursday afternoon, I’ll hit a soft wall. Something shifts, and I start feeling a serious lack of interest in doing anything. Friday morning I’ll wake up and wish that I could stay in bed, but I go to work and just make sure to take it easy. Saturday and Sunday, I do stay in bed most of the day, and I keep wishing I could learn to astral project because my mind and body are just gone. I can’t read, don’t want to listen to music, and can hardly carry on a conversation. I can’t even make mental plans for a couple of days: it is somehow too taxing to think ahead or even think back too far. If someone asks my opinion about something, I just smile and say, “Ask me in a few days.” By Monday I’m picking up a little energy, but I find that my mental energy is usually ahead of my physical energy, which leads to the conversation that Dorothy says we’ve had five times now: I say, “Wow, I thought I was going to [do something... usually something minor like help clean up the dishes or go for a walk], but I guess I’m just more tired than I thought,” and she says, “Remember, this happened last time?” But of course I don’t remember. So I just park on the couch after work and stop trying to do anything.

Chemo seems to typify that wall between cancer patients and the people who want to help them. For several years I’ve heard chemo stories and silently made judgments about whether or not those people were exaggerating or really sensitive or just weak. Now I look at the reactions of other people when I try to explain to them what this treatment is like, and I see the same skeptical reaction behind their sympathy. When I say, “sorry but this week I’m just not up to it” I can see that polite tight-lipped reaction that says, “Yeah, I’ll bet you’re just making an excuse.” I suppose that for all those times in the past when I did use a lame excuse to get out of something, this is my payback. But the unfortunate thing is that it’s real. I really do crawl into a cocoon for a few days and do nothing. For several days after that, I’m up and around but I don’t have the mental or physical energy for anything but the most simple tasks. And after five rounds of chemo, my mental alertness is dropping off for almost the full 21 days of the cycle. (This blog post has taken seven drafts, over a period of ten days, and I’m still not sure that it’s clear or well-phrased. Oh well.)

OK. Maybe just a little sympathy from you, dear reader. But just be assured that I’m not playing this cancer card lightly. Chemo really does mess with your energy, your thinking, and your ability to care about anything but making it until the next nap, or until bedtime.

viva las vegas

I have an awesome oncologist.

I’ve been travelling to Las Vegas for 18 months, not because I can afford it, but because it’s the best option that I can manage. There is excellent medical care here in Utah at a renowned cancer center, so it’s not like I wouldn’t be in good hands here.

But in 18 months I’ve enrolled in three clinical trials that are not available in Utah and received a newly approved treatment (Provenge) two months before anyone in Utah had access to it. A more important benefit is that as I have gone through those treatments, I’ve come to understand better what is going on with this disease and how I can manage my life around it.

In The Human Side of Cancer (recommended reading for anyone dealing with the big C), Dr. Jimmie C. Holland says that there are basically two kinds of cancer patients: those who want to know everything so they feel empowered to be part of the decision-making process, and those who want to know as little as possible, leaving decisions to the oncologist. There are benefits to both approaches. While I wish I could leave it all up to the doc, I prefer to have as much information as I can handle so I understand why treatment decisions are made.

I fired one oncologist over this issue. Well, it wasn’t that dramatic. I just stopped scheduling appointments with him. He was a brilliant researcher, highly skilled at assessing the data and recommending treatments based on accepted standard of care. And he was clearly most comfortable with patients who accept his recommendation and don’t ask questions. So we parted ways. On my third visit with this physician, I had a list of questions that were nagging at me, given that my peace of mind had been ruined by a rapidly rising PSA and the need to change to new treatment. After a rushed consultation with this doctor, he rose to leave. I said, “I have some questions.” With a sigh he consented to answer, and remained standing, but with each question he inched toward the door. He was literally halfway out the door on my fifth question, and clearly not pleased.

Sometimes I get carried away and tell people I now have the best oncologist in the world. He doesn’t just answer questions, he asks me questions—about me, my life, my family, our shared interests, my thoughts and feelings about my disease. He knows my wife, he knows how many children we have, he remembers details from month to month. He teases me about flying to Las Vegas and taking the city bus across town to the clinic, with my Provenge backpack and worn old shoes. We joke with each other. He took great pleasure laughing with me about a trip he took that passed through Parowan, Utah. And he tells me the truth, straight out, and somehow I can hear it without the anxiety that used to overwhelm me.

I’m not sure how he’s managed to instill a sense of calm in me, even when things are going badly. Back in March 2010, Dorothy and I drove the 6+ hours from Salt Lake to Henderson, Nevada for the first time, braving snow flurries and the tedium of a long drive until we finally saw the glowing cloud cover over Las Vegas at about 10:00 on a Sunday evening. Dorothy’s cousin has very generously given us a place to stay any time we drive down for an appointment, and so we felt cared for in many ways from the first day. And our experience with the clinic has been consistently excellent. Like my experience in other hospitals and clinics, the nursing staff is truly the heart of the operation, and all the staff is cheerful, kind, and real with us.

During these 18 months my prognosis and symptoms have become much worse that when we first met, but I’m more at ease with the process and with the uncertainty. I remember very well the first time our doc dictated his notes (he does this in the exam room so we can hear his evaluation), reviewing my medical history and summarizing my status at the time by saying “he is in robust health.” I was (almost childishly) pleased: “robust”! I felt great. It hadn’t occurred to me that in general I was in very good health. A couple visits later, he told us, “You really have very little cancer.” Again, it was reassuring to get some perspective.

And yet I remember how he hit his fist on the counter in frustration, in the exam room, when he saw that my PSA had risen to 53 (up from about 30) during the first clinical trial. Just a short outburst, but it encouraged me that he was angry about that relapse. Things have gotten worse since then, but knowing that he’s on my side and cares enough to get mad makes a huge difference.

A sense of empathy from an oncologist, whose work involves both healing and helping people prepare to die, is literally life-saving. At a very difficult time during my second clinical trial, when side effects (“toxicities” is a more appropriate word) were beating me down, the doctor asked how I was feeling. That day was a tough one, and I was really down. “I just feel sad,” I told him. “I feel exhausted and sort of hopeless.” He thought for a moment and said, “Well, you should. You’ve been dealing with a really tough situation for a long time.” I wasn’t expecting that. His honesty and empathy went a long way in giving me a reference point for dealing with the worst of the treatment.

I don’t like to sound cagey about the identity of my oncologist, but I haven’t asked for permission to publish details about him or my treatment. So I’ll just share some photos I took on one of my trips and stay a bit vague.

[May 16, 2011: a typical trip to Vegas]
 

Terminal A at the Salt Lake airport is built around the original old airport terminal that I remember from the early 1960s. When I’d go there as a child, either to wait for my father to return home from a business trip or to greet my great-aunt Wanda on her annual visit, I loved to walk around the linoleum world map with gold dots for the major cities around the world, and gold lines that showed the air travel routes. It’s sad that now this floor art is overrun with lanes for the security lineup.

I usually take work with me for the morning flight, so I rarely even look out the window any more. I do like the change in scale and watching for landmarks along the way as the plane heads south over the west side of Salt Lake Valley.

Scenes over Nevada: Moapa Valley, Lake Mead, Lake Las Vegas, Eastern Avenue at
Sunset just before touching down.

The funny thing is, without fail, anyone who finds out I go to Las Vegas to see a doctor starts by asking me if I’ve seen any shows. What, is that all there is in Vegas? Most people are a little disappointed to find out that I’ve never even been to the strip in 18 months, unless you count a short drive down Las Vegas Boulevard one evening. The new Celine Dion show was opening that night, and seething masses of humanity hunkered down in the neon-lit streets, pushing mindlessly forward to their next shopping or gambling or boozing destination… or to a show. What’s so interesting about that? We slowly made it to the north end of the Strip, the old Las Vegas, and were relieved to get away from the craziness. And we’ve never been back.

The closest we’ve been is to the new outlet mall at the north end of town, next to the World Market Center and within view of the funkiest little building ever, which houses the Cleveland Clinic’s Lou Ruvo Center for Brain Health.

Who’d have thought that Dorothy, who has never cared much for shopping, would make this outlet mall one of our regular stopping points? If we get an extra hour, we head over there—”just looking for Christmas presents” is her favorite excuse. And now that we’re well stocked with stuff from Trader Joe’s (our other regular stop), the outlet mall is getting to be a habit.

There are, in fact, some intriguing places in the city. You just have to know where to look. Who knew that there’s a Pinball Hall of Fame? In a plain little building on Tropicana, a mile from the strip, a group of pinball fanatics (all volunteering their time) have set up a museum of sorts where you can play pinball on machines dating from the late 1940s to the present. It’s a cool real-life antidote to online and video games, and profits go to the Salvation Army.

When I travel on my own (which is about two-thirds of the time) I see the invisible side of Las Vegas. I take a bus from the airport that passes by the UNLV campus, following a couple of main roads through sad neighborhoods where the working class live. It’s not pretty. This little trip I take each time has it all: the airport never lets you forget where you have landed. It’s a strange collection of old and new terminals, from the space-age 60s styling of terminals A and B to the mauve desolation of the main terminal (and terminal C) to the clean lines and oversized view windows of terminal D. At every gate, you are dropped into the land of neon, glitter, and slot machines: you step off the jetway and immediately hear the electronic chimes and “WHEEL – OF – FORTUNE!” chorus of the always-available slots.

The city bus stop is on level Zero, down where the limos and shuttle buses are lined up. For a five-dollar day pass you can ride almost anywhere on a system that is reasonably on time and reliable.

With the economic bust of the last few years, the city is looking even more worn and hopeless, with empty buildings, parking lots filling up with dust and graffiti, and nothing very attractive about any of it. There’s heat, and wind, and dust coming in off the desert. In the winter it’s cool, and there’s still wind and dust.

Dorothy says it’s the ugliest city in the world. I don’t argue the point. Las Vegas is an odd city in a harsh environment. Palatial hotels with rooms that rent for more in one night than I pay in several months on my mortgage… half a mile from sad, bleak poverty in a desert.

One day when I had a couple hours to spare, I walked through an old neighborhood that was apparently fashionable in the 60s and 70s. The homes are an amazing jumble of 60′s mod, goofy retro details like Greek columns, 70′s California architecture… and it’s all worn out now, with only a few homes kept in decent shape and a dried up golf course behind them.

The “nice” areas of Las Vegas are now far out in the suburbs, like the upscale areas well West of the strip or the clean-cut spots like Henderson, which are islands of normal in an otherwise crazy city. Most anything within a couple miles of the strip is generally not a great place to live.

But that’s where I go, every three weeks on average, to see my oncologist. The staff at the clinic are getting to be friends. The nurses I work with are wonderful. It’s a little bit like home, at least as much as a cancer center can be like home. And I’ve found some nice comfort-food restaurants along the way, my places of refuge on those tiring days (mediterranean, anyone? or sushi?). For all that you might think about the city, it’s been a remarkably good experience. In 18 months I’ve only had one close call (nearly got run down crossing a street), and in general drivers are incredibly courteous (especially compared to the passive-aggressive crazies you deal with in Utah). Never been accosted or harassed by street people—they just hold up cardboard signs at busy intersections and look forlorn.

The best of it all, of course, is that I’ve had 18 months of mostly robust health that was not otherwise available to me. And, the world’s best oncologist.

well… here we go

Last Wednesday, Dorothy and I found ourselves saying something that seems to be a theme of the last few years. We had just spent three hours at the clinic in Las Vegas, meeting with our oncologist and waiting around for my Zometa infusion. As we walked out of the building, we looked at each other and said, almost in unison, “Well… here we go.”

We are going somewhere again, not quite sure where, nor for how long, and least of all where it’s going to take us.

It’s another bend in a road that we never planned to be on, don’t particularly like, and don’t know how long it takes to get wherever we are headed.

I had a remarkable response to the Exelixis clinical trial during the last seven months. Within a month of starting the drug my bone pain and numbness were gone, and the scans (every 6 weeks) showed tumor regression or stability. But for whatever reason, it’s losing its effectiveness and two new bone spots showed up in the scans this month. My PSA has gradually risen from 143 to over 600 in those seven months, and while that was a little concerning, as they say, no one could say why it was rising so much when the tumors appeared stable.

In any event, it’s on to the next phase: docetaxel with prednisone, and I’ll be part of a blind placebo trial that adds Revlimid to the mix. Early trials have shown very positive results for those who get Revlimid, but we won’t know for sure if I have that benefit. Docetaxel alone should still be quite effective in bringing down the PSA, which would be good at this point.

So, here we go: another bend in the road, another unknown destination. One step at a time, and it’s a great comfort to know that Dorothy and our three children and two sons in law are walking it with me.

this one’s for real

My first blog post featured a wonderful fake ad. This one, it seems is real.

[Photo from The Consumerist]

I have to admit, I don’t remember a time when I didn’t like lemon-lime soda…