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Archive for the ‘prednisone’ 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…

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