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Archive for January, 2012

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.

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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.

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