Feeds:
Posts
Comments

Archive for the ‘clinical trials’ Category

Seasons are becoming my preferred measure of time. I have trouble tracking individual days or weeks, and even months sometimes blur together. But I can look back over the last few years and a remember the gist of a season: the long, warm fall of 2009, followed by the crazy intense snowstorms of winter 2010. Summer 2011 was cold and rainy. Winter in early 2012 was unusually dry.

Treatments and side effects also feel seasonal. My clinical trials have lasted 4 to 6 months at a time, so I remember them as seasons: there’s the Tokai summer of 2010, when I was living with a bit of weight gain but few real side effects. That fall I had the crazy Provenge experience, an intense 6-week period when I had a permacath stuck in my chest and did leukapheresis followed by infusion, three times.

Exelixis XL-184 took two good seasons in 2011. The gastrointestinal side effects became more and more extreme in the spring, and that summer I was wasting away (lost 25 pounds) and eating an oddly austere diet (bottled peaches, steamed rice, toasted white bread. baked potatoes; no acidic foods, spices, onion, or garlic, and eventually no fiber or fats to speak of). Although I stayed reasonably active that summer, my hair and skin bleached out to a ghostly pale and my appetite dwindled. Any time I could eat something new, I’d latch onto it until I was sick of it: I had a couple weeks of craving sushi and udon noodle soup, but then my taste buds said NO MORE. It was an odd price to pay for seeing my bone mets reverse and disappear from the scans.

Last fall, my first chemotherapy made the season muted: starting in August, I had a schedule of infusion followed 4 days later by exhaustion, then two weeks of building up strength and mental clarity. Just when I’d be feeling decent, it was time for the next infusion. By November, I was moving slower and thinking in a cloud. With daily prednisone, I began regaining all that weight I lost with XL-184.

Winter 2012 started on 20 December 2011 with my first dose of Zytiga, also with prednisone. Within a couple of weeks I became ravenously hungry, my blood counts continued to drop towards anemia, and fatigue became a constant. Spring went by in a hazy blur, with me too tired to care about much of anything except getting to work every day (which, fortunately, was not a problem) and keeping ahead of pain with lortab. Weekends I’d lounge on the couch, catch up on old movies, doze off, whatever.

This has become the summer of the rice bag scrubs. In March our family spent a week in Hawaii thanks to a gift from some very generous friends, and even though I had to hold back on some activities, we had a great time. By that time, about 6 months of prednisone had fattened me up, and my hair hadn’t quite started to grow back, so the photos of me in Haleiwa are those of a pudgy, potato-headed white guy. White in the literal sense, after a long winter indoors.

Now it’s mid-July. Days are long and nights are warm. If not for the wildfires that are smoking up the air in northern Utah, life outdoors would be just about perfect. I should be out there. Instead, I’m flopped on the couch wearing blue pajama pants and the rice-bag scrub shirt I bought at the Aloha Stadium swap meet in Honolulu. Some guy is making a good living selling scrubs, shorts, and tote bags made from Japanese 100-lb rice bags, and of all the awesome souvenirs I could have brought home, I just had to have one of those rice bags. That, and a 3-D plastic picture of Jesus. I can’t explain that one. He just kept looking at me, so I plunked down my five bucks and brought home Jesus.

Since Zytiga started to fail me in May, things have been dicey. By April my PSA had dropped from nearly 300 to just under 100, the lowest it’s been in a year and a half. But then it crept back up a bit, then more, and in May and early June it was bouncing up and down in the 200-300 range again.

Happily, the Bayer expanded access trial of Alpharadin came through and I had my first treatment June 6. It had been difficult waiting for that, knowing that it was in the works but just out of reach for a couple of months. And those were months that saw my pain levels rise considerably, leading to a whole new level of pain med management: Celebrex for basic joint and bone pain, with Tylenol and/or Lortab for the little ups and downs. Then lots of Lortab as things intensified. After several major episodes of breakthrough pain, we added a 12-hour morphine pill to get me through the nights and through some particularly bad days. And then regular senna pills to counteract the constipation.

The good news is that two weeks after beginning Alpharadin, I cut way back on my pain meds during the days. I’ve even had a few nights where I skipped the morphine. Something good is happening here: I don’t know my PSA count from my July 3 labs (the day of my second Alpharadin treatment), but LDH is dropping (from a very high level) and AlkPhos is in normal range (it’s been high for months). We assume that PSA and CTC will also be down, but I’m not going to ask until my next visit. Not knowing is a luxury that I try to take advantage of whenever possible.

So 2012 is the summer of the rice bag scrubs. I’ve hardly been outdoors, and now that I’m trying to taper off the prednisone, I haven’t been doing much of anything. That’s one drug I could have done without, not because of side effects while taking it, but the frustration of trying to stop. My adrenals have pretty much shut down, so as I chip away at those little pills, shaving off a milligram or so, I alternate between flat-on-my-back exhaustion and nervous-hot-flash sweats. Boy, do I miss hiking, and swimming, even going for leisurely walks that last more than about ten minutes. Who’d have thought that prednisone could take me out as completely as chemo?

It’s odd that my rice-bag summer is reduced to little more than going to work, taking pain meds, and collapsing on the couch. I’m always apologizing for not having the energy to do things, and I try not to be judgmental: I can’t afford to look back, adding up what I’ve lost or thinking about what I could be doing. Those are dangerous thoughts. For five years I’ve been training myself to stay in the moment, first out of fear for what could happen, then out of sadness for what could have been. It’s too painful to count up the losses over those five years.

Last night we had a huge windstorm on the mountain, followed by a fresh, cool rainstorm after several days of 100-degree-plus heat and smoky air. What a beautiful break. We stepped out on the porch in the comforting purple twilight and finally felt cooled off, fully and happily. Maybe that’s as good as it’s going to get this summer, so I’m working on being patient. Baby steps with the pain meds, the prednisone tapering, and not overdoing the regrets. It’s been disappointing to not have more to give my family. I mean, I’m going to be a grampa in September, and here I am on a couch all summer long? I keep believing I’ll get my brain back and get back to swimming and walking, but until then…

Advertisements

Read Full Post »

It’s been five months since I have made any regular visits to Las Vegas, and oddly enough, I’ve kinda missed it. But I’m gearing up for a new clinical trial and getting back on the road to my cancer treatment home away from home.

It’s just not easy to explain briefly how my health has been, but I’ll try. Last August I started my fourth treatment, third clinical trial, with Dr V.  It combined Taxotere (a standard chemotherapy) with Lenalidomide. The chemo lasted until December (they actually pulled the Lenalidomide after a couple of months when they found no benefit in early trial data).

So starting mid-December, I was off chemo and had no new clinical trials ready to go. We decided to start with Zytiga (abiraterone acetate), a new drug that had been approved by the FDA in April 2011. Since there was no study protocol, I began seeing a new oncologist in Salt Lake who could monitor lab work and give me monthly injections of Xgeva (denosumab), a bone-repair treatment that was FDA-approved in November 2010.

Somewhat surprisingly, I had good results for four months on Zytiga. It was surprising because my first clinical trial (Tokai’s TOK-001) was a drug that is quite similar to Zytiga. It seemed likely that my cancer might have already learned from that one how to get around this particular drug, which inhibits the CYP17 enzyme that is “required for androgen biosynthesis” (try reading the official literature on this drug for some real fun). Essentially it blocks anything, prostate cancer cells included, that tries to build androgen hormones. I like to think of it as an intense hormone blocker that has turned me into a soft blob of a human being. Something between the Michelin man and Mr. Bill. And then add on white curly hair from my chemo-perm. I don’t look like myself, lately.

The thing is, Zytiga worked for me, probably because I had been on a fairly low dose of the Tokai drug. In December, my last CT & bone scans showed that I had somewhat extensive bone involvement with my cancer, in spite of the chemo; my PSA was in the 300 range. Since then we’ve only really checked PSA levels, and they dropped as low as 97 before rising a little (112) and then jumping up higher (186). So, it looks like there are cancer cells that have found a new way to survive.

For whatever reason, I’ve had to deal with extensive pain since the beginning of the year. Honestly, I don’t know what’s intensifying the pain. I assume it’s tumor activity in bones, but with my PSA dropping while the pain increases, that doesn’t seem to tell the whole story. It could be that Zytiga is part of the problem, since known side effects include joint swelling and pain, and muscle discomfort. The pain could be related to Xgeva which, like Zometa, can induce muscle pain and flu-like symptoms. Of course, no drug company wants to take responsibility for my pain, and with multiple things going on, there’s rarely a clear answer.

Happily, we’ve got a new clinical trial now that my PSA is rising. Bayer has partnered with a Norwegian company, Algeta, that developed a treatment called Alpharadin. It uses a form of radium-223 to deliver low-intensity radiation directly to cancer cells. It’s a smart idea that has improved on similar drugs like Samarium-153, which has been used since 1998 for pain management of bone metastases. Alpharadin is on track for FDA approval, and the best thing is that Bayer has opened up their phase III trial for compassionate use. This means that if you qualify, they’ll let you in on the trial so you don’t have to wait for the FDA to grant their magic stamp of approval.

So, I’ve got the paperwork done and it’s looking like I can start within a few weeks. I had a quick visit at the end of April with the doctor, and yesterday I saw the clinic’s radiation oncologist for a review of my treatment history to get everything OK’d. Now we just have to wait for the radium to be delivered from some secret location in Norway

So, Las Vegas, I’m coming back. Be good to me, OK?

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

Older Posts »