Archive for the ‘family’ Category

It’s been only 16 days since Dorothy and I were told about my brain metastases. It would be somewhat true to say that those 16 days have been like a mini-lifetime. But it is also true that those days have collapsed into one long present moment, from which I would like to separate myself but can’t.

The first thing Dr. S (my Salt Lake oncologist) did, after breaking the news, was call in a prescription of dexamethasone for me to start immediately. With the possibility of tumors pressing against the brain and a hint that some fluid was building up, the dex helps reduce inflammation and edema, and so it was important to get going with it.

Being a corticosteroid drug like prednisone, I figured I was in for a wild ride with the dex. Big understatement. I was started on a “standard” dose of 8 mg twice a day, which as it turns out is approximately equivalent to 10 times the amount of prednisone I was currently on. My weekend before starting radiation therapy was a blur. That drug wired my thinking patterns to overdrive and alternately kept me buzzed and exhausted. I’d wake in the middle of the night and not be able to sleep, laying wide-eyed in bed for hours on end.

I dropped the dose after the weekend and have been trying to find a manageable dosage that lets me sleep (with a little help from a sleep drug, after my mid-night wakeup). But my mental and physical cycle over a full day continues to be goofy: take the dex first thing in the morning, have energy and mental buzz into the afternoon, take a little time to crash and hopefully nap in late afternoon, then have a somewhat normal evening with some of the mental buzz again. Fall asleep, wake up 4-6 hours later, take a little Ambien, hopefully get 2 more hours sleep. And repeat.

The part that is baffling to me is how dexamethasone messes wth cognition and memory, and with basic personality traits. There are some crazy things going on with brain chemistry that I wish I understood. On the higher dose, I found myself losing any sense of the immediate past. I’d float through the day pointed firmly in a forward direction, hardly remembering what just happened or what I’d done in the last while. Oddly, this has given me a taste of what it might be like to be an extravert. I’m off the charts introverted in most ways (if you go by the temperament descriptions in tests like the Myers-Briggs Type Indicator) and now I wonder how much of that is connected to thinking about past events, such as reminding myself what I did or said in a situation and mulling it over.

Even now, on a more manageable dose, I do not give consideration to the past. I remain pointed forward, focused on what is happening right now. The past just flows on behind me like the proverbial river of consciousness, and I do not look over my shoulder. Really, after 16 days, I’ve come to this point? Like I said, I don’t know if this is a mini-lifetime or a big open space in the eternal Present.

One benefit, if you want to call it that, is that these couple of weeks have very unexpectedly become productive and focused. At work, I just get stuff done and then wish I had more to do. At home, I’ve been manic about finishing projects, stuff I’ve put off literally for years in some cases. If I see something that needs doing, I just step in and do it until it’s done. No other plans, no time for decision-making–it’s just there to be done, and I do it.

And all kinds of things are falling into place in the most unlikely ways. For months Dorothy and I have been talking about whether to get the house in shape and put it on the market. Instead, we just did a lightning-fast refinance that will save us a bunch of money every month. That all happened in about 10 days. Just before that, we printed out the will and living will documents I started two years ago, and had them notarized. At the same time, we decided to get a new car I’ve been thinking about since early summer. With the mortgage savings I can make the car payments every month. We are still painting and repairing the house, too, with help from Rachel and Jase. It looks beautiful with a fresh coat of warm tan paint on the main floor.

Yeah, I know, this sounds like the drug has pushed me into mania. But so many other things are happening like a row of dominoes. We’ve wanted to finish our back yard landscaping but have been stuck because the empty lots next door have never been developed. Yesterday, a backhoe showed up and the first of two foundation holes was dug, after seven years’ waiting. And as I was getting ready for the car deal, I had planned to trade in my old car. Not necessary: Kate and Tim’s old Saturn lost its clutch ten days ago; they have no resources to buy a new/used car, so, my old car is now theirs.

How little we really understand about brain chemistry: I think I’m experiencing things for the first time in my life that are just normal to other people. I do worry about crossing the line from euphoria into mania and then psychosis (well, Wikipedia says all of those are potential side effects of dexamethasone…). But I think Dorothy likes the modified me. I’m cleaning out all kinds of junk from our basement storage and getting all kinds of things organized.

As we talked about today’s victory (we gave away a headboard and bed frame we’ve been storing for, oh, a decade) we got into our game of morbid chicken. I kidded Dorothy that it looks like I’m on a crash course of putting all my affairs in order, just in case… which would not be unusual given that I have tumors in the brain. But I’ll be really, really bugged if that’s the case. The reason we joke about it is that Dr. V, when he told us to get an MRI, just casually mentioned that with brain tumors (as unlikely as they are for prostate cancer), if you don’t get them treated, well, you could just end up in a coma or something. Or Something. Yes, our imaginations went wild with that one.

Oh, so about the game of morbid chicken: it’s where we take turns talking about our worst fears related to cancer and dying. You get a point for making the other person cry, two points if you both cry, and three if you both laugh and cry. Then the bell sounds and it’s time for the next round in the game. That’s how we deal with this craziness. I got a point today when I said that if I were to suddenly lapse into a coma, Dorothy may absolutely not tell people that I knew the end was coming and had to work everything out. It’s just not true. I don’t have any inclination that this is more than another sharp twist in the treatment road. People get whole brain radiation all the time and it works well for many of them. People do survive brain mets. Some people don’t. Brain mets are not a good thing to have, but if we get stuck in disaster thinking about them, we lose perspective. And right now, perspective is what keeps me centered. I think it’s safe to say that I’m focused on the eternal present moment, with a drug that’s messing with my mind just enough to enable that little taste of enlightened living.


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As a rule, I’ve kept my posts on this blog focused on my cancer experience and on my personal, random reflections. It’s a little awkward to write about other people in such a public forum. However, I have my wife Dorothy’s OK to get personal in public. Why did I wait?

For a little background mood music, I’m adding a song from an awesome songwriter, David Bridie, who started out with an Australian band called Not Drowning, Waving and then moved on to co-found My Friend the Chocolate Cake. I came across this song a couple years ago and it speaks to me of my respect and awe for the woman I married. (Just click to hear a live version of the song.)

More Heart Than Me

Dorothy and I met in 1984. I was a lonely, unfocused graduate student living in my grampa’s house, half-heartedly working on a Master’s in French and uncertain about my future. We’re not exactly sure when and how we first met, except that we both attended a Mormon student ward (congregation for single adults) at the University of Utah, and at the time she was finishing a B.A. in English; I was a French teaching assistant and worked for Dialogue: A Journal of Mormon Thought. We must have passed each other in the halls at church many times, but at some point she found out about my Dialogue connection and I found out she had just been published in Sunstone magazine. Must have been in August, when I was manning the Dialogue sales table at the Sunstone Symposium in Salt Lake and recognized Dorothy from church.

Shortly before the start of fall term, I was asked to speak in sacrament on the pretentious subject of “gospel scholarship.” I’d never been up on that podium before and remember very little about what I said. (And in retrospect, I feel bad that I missed out on Dorothy’s opportunity to speak in church in another student ward, when she was assigned to speak on personal hygiene. She borrowed an oversized toothbrush and hinged set of teeth from her dad’s dental practice and demonstrated proper brushing techniques, among other things.)

What I do remember after I spoke in church was that an engaging young woman walked up to me, complimented me on my talk and my charcoal wool blazer, and couldn’t resist reaching out to TOUCH my jacket. She kinda stroked it a little, then looked mildly apologetic, smiled, and disappeared into the crowd.

We do remember a few other early moments, but the chronology is uncertain. Dorothy substitute-taught a Sunday School class one day, which I quite enjoyed. We’d see each other at ward gatherings, like a “Mingle or Stay Single” lunch one Fast Sunday. On that day, Dorothy’s forward nature made an impression when she broke out of line, fork in hand, and helped herself to a baked potato I was holding on a paper plate. I didn’t know any of the women in the ward so well that I’d allow such familiarity. It was refreshing.

So we became casually acquainted. My friend Clay and I talked about Dorothy, as single young men do, and he encouraged me to step forward. But I was painfully shy and had enough trouble with the idea of a personal, working-my-way-up-to-a-date relationship, let alone being forward with someone who intimidated me with her smarts, humor, and relaxed manner.

Still, it was fated. As it turns out, Clay became my accomplice in what must stand as one of the worst first dates in history. At the time I drove a ’72 Dodge Dart that had been handed through the family, and in the dead of winter this car had no functioning heater. I didn’t mind so much, but I hadn’t considered whether it would be an inconvenience to a fellow traveler. In early February, Clay and I agreed to host a casual get-together at his house in Kaysville, a 20-minute drive from Dorothy’s apartment in Salt Lake. True to form, I didn’t quite manage to invite anyone else (I still have issues with organizing group activities). Clay’s girlfriend didn’t even make it. But I convinced Dorothy that it was a party of sorts, and she agreed to go with me.

The temperature must have been about 10° Farenheit, and as we left in the dark evening Dorothy’s winter coat just didn’t keep her warm enough. So I suggested she open the glove compartment and look for a space blanket I had tucked in for emergencies. Yes, one of those flimsy metallic sheets that reflect back body heat. You can’t say I didn’t have a gallant streak. You also can’t say she was impressed. I think I caught a look of subtle desperation in her eyes as we trundled along I-15 in my dusty old car, with Dorothy trying to tuck a crinkly little piece of Mylar around her legs to keep from freezing.

And that only set the stage. Clay lived in a small house with his mother, her poodle, and a wind-up toy dog that found its way into the party. We were going to play a board game, possibly Trivial Pursuit, but with just the three of us that didn’t quite work out either. What stands out is how blithely Dorothy sailed through a short evening, not acting for a minute as if anything were seriously wrong. I remember is how she wound up the mechanical dog and held a conversation with it as it yapped and wobbled around on its stubby little legs. I tried not to laugh inappropriately, but Dorothy is a natural entertainer. Clay and I were laughing like fools and Dorothy just kept going.

I’ll never know how I got lucky enough for a second date. I’m quite sure Dorothy thought it was another memorable one-time fiasco in her dating career. But as spring broke in the city, we found ourselves crossing paths again. She lived only two blocks from my grampa’s house, and she’d go out jogging early in the morning on Eighth East, toward Liberty Park. I was rather surprised one morning, getting into my car for an early class, to hear her voice: “I think I just got flashed!”  It seems that at one of the duplexes up the street, a man stepped out on his porch in a bathrobe to pick up his newspaper and couldn’t resist showing, well, more than he should. I sympathized with her, trying to reassure her that it was a safe neighborhood.

And so it went. We talked more, she invited me to go running (kicked my butt, of course), I invited her over to Grampa’s house one evening for canteloupe and yogurt. We dated, and it was good dating. I started writing her notes and leaving flowers for her, and we had some memorable moments in that Dodge Dart once the weather warmed up. April and May were blissful months. Then a bit a of uncertainty entered the picture: Spring term was her last quarter working on her degree, and she had made plans to go on a long bike trip with her friends Lynda and Alan after graduating. I worried about whether we’d still see each other after she returned, and wondered how I would keep up with someone who had such ambition and a carefree ability to make things happen. But I think I’ll save the rest of the story for another day.

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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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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.

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winter cheer

The winter holiday has come and nearly gone. Kids home for Christmas, gifts coming out of every closet and nook, snow piled deep. Now that we’re all back at work and school, the tree and decorations will slowly be put away. This year I don’t want to let them go too quickly. Those little tree lights and decorations and candles keep the cheer going into cold, gray January.

I believe it was 1988 when Salt Lake City saw a snowstorm on Christmas Eve that piled it high and made driving an adventure. Our little house on Musser Court, which we rented and then bought on a contract from the owners, was a sad little thing but the scene of our early family joys. Christmas day was on Sunday, and Dorothy and I packed up baby Kate (well, 2-year-old Kate) in the 1972 Dodge Dart and slid through a foot of snow up 900 South to 1300 East and then over and down to the Garden Park Ward on Harvard Avenue for sacrament meeting.
Annie and John Brewer lived in the ward, as did Richard and Barbara Fox, old family friends, and Linda and Jack Newell, the Dialogue editors I worked for. We enjoyed a cozy, mostly musical service with a small string orchestra. And we somehow made it back home through those unplowed piles of snow. We then drove to Orem for the Black family Christmas brunch and more gift exchanges. Later in the day we’d end up at Dad and Judy’s place for a casual buffet or just time together around a fireplace. I still wonder how we managed to get around in those conditions with such primitive old cars and never snow tires.

The little traditions and reminders are here every year. We’re now starting to give away some of the decorations and lights to the married daughters. What I like about our tree every year is that each ornament carries a story with it, from little baby toys our first Christmas and folded origami birds and stars (the year we were too poor to buy ornaments) to the fanciful Dame Poulet (chicken lady) we bought in Bruges, Belgium and this year’s addition, a wooden Frank Lloyd Wright design from the Fallingwater gift shop in Pennsylvania.

In late November this year  we decided to try cutting trees ourselves for the first time, and after a miserable cold day somewhere north of Tabiona, Utah, we trudged through knee-deep snow, watched Jase fix his chain saw, crossed a frozen river in the Ashley National Forest, and cut three trees. Total cost, about $150, but the memory was worth it. We’ll just have to be smarter next time, and better prepared for serious winter survival.

For now, I’m ready for January hibernation with warm Pero/cocoa next to the fireplace. I shall sit here with my memories and wait for spring.

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A wedding tomorrow. First snowstorm possible this week.

Change happens.

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busy. just busy.

October is going to be crazy. It’s already crazy and it’s only the 12th. So first, a quiet reminder of what October can look like in Utah.

This year was a little dry, so the colors aren’t intense. But the temperatures are still warm.

A quick summary of this month’s busy-ness:

  • Two days at the clinic in Las Vegas, scans, going off one clinical trial and signing up for another.
  • Four days in St George to watch my super-athlete wife swim (9 golds, 4 age group records) and do a sprint triathlon (6 seconds away from a bronze, and she hasn’t even trained for it).
  • Start Provenge treatment (yesterday) at the Red Cross center, shivering for 3 hours as they spin out my white blood cells and try to keep my calcium levels from dropping too low.
  • Provenge infusion scheduled this week, then in two weeks another blood draw/infusion. And a third two weeks after that.
  • Get ready for my daughter’s wedding. It’s in 11 days. Uh-oh. I’m so not ready, but she is.
  • Help my son get ready to leave on a mission in November. Two years serving in the Pacific Northwest. He’s excited. His mother is not.
  • No, I’m not even going to mention what’s going on at work. Not fun, that’s all I’m going to say.
  • No time for landscaping even though this is my last few weeks before serious snowfall.
  • Happily, I have a new son-in-law who’s started work on finishing the basement. It’s only been five years, what’s the hurry?

I’m so busy, I really have nothing to say. You could probably see that already. I just wish I had time for a drive into the mountains to sit and look at the autumn leaves.

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