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Archive for September, 2011

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]
heading down the mountain in the rain35-minute drive up I-15 to the airportinto the economy lot, in the rain 

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.

Salt Lake Terminal A floor map of the worldthe security routinewaiting to boardrainy morning

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.


I-15 and Bangerter Highway interchangenot a publicity shot - just nice to be above the clouds

scenes from flight, SLC to LASScenes 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.

Las Vegas Cleveland Clinic building

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.

Las Vegas Pinball Hall of Fame

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.

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