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Archive for August, 2012

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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Over the last five years I’ve spent a lot of time searching: for advice, for answers, for some kind of framework to understand the crazy detour my life has taken. Dorothy and I have read a lot of books, articles, and web sites, looking for spiritual guidance and practical help.

For a while I kept a notebook in which I’d write out paragraphs that were meaningful to me. I’m a terribly unorganized reader: I’m constantly saying, “you know, I read this article about [whatever subject we’re talking about]” and I usually end up by saying, “now, where did I read that?” So I figured I better at least take notes of the really good stuff.

One book I found at the library several years back was Pema Chödrön’s The Places That Scare You. The title seemed appropriate at a time when I was constantly being flooded with anxiety about medical tests, results, and deciding what to do next. And the book was rewarding.  Ani Pema Chödrön is an American woman who became a Buddhist nun in the mid-1970’s and who has written several widely respected books. She is a teacher in the Buddhist monastic tradition and is the director of the Gampo Abbey in Nova Scotia.

I wrote down several paragraphs from The Places That Scare You in my notebook, because they were striking and challenging to my thinking. In some ways that book was my introduction to a different way of experiencing change and losses? Before I quote from it, two words need defining: bodhichitta is the enlightened mind, a place that is vulnerable and tender and lets us react in love to difficult or painful circumstances. The warrior that Pema refers to is the image she prefers for how we see ourselves: a person who is prepared each day to face new challenges, new circumstances, and who has a mind that looks at each day as an adventure. A warrior isn’t complacent and doesn’t try to stay in a safe, controlled environment.

Many of us prefer practices that will not cause discomfort, yet at the same time we want to be healed. But bodhichitta training doesn’t work that way. A warrior accepts that we can never know what will happen to us next. We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainty. This not knowing is part of the adventure, and it’s also what makes us afraid.

Bodhichitta training offers no promise of happy endings. Rather, this “I” who wants to find security—who wants something to hold on to—can finally learn to grow up. The central question of a warrior’s training is not how we avoid uncertainty and fear but how we relate to discomfort. How do we practice with difficulty, with our emotions, for the unpredictable encounters of an ordinary day?

I don’t pretend to know much about Buddhist teaching, but I have found it stimulating and helpful as I try to reconcile my beliefs with the confusing realities of having a life-threatening illness. Last year I bought a copy of another book by Pema Chödrön, When Things Fall Apart, and again enjoyed the challenge of re-thinking my values as I read it.

While I try not to get caught in reading through a comparative religion focus, what intrigues me at the core of this book is the assertion that we may never find solid ground in a changing, difficult world. I’ve always thought the concept of being “grounded” meant that there’s a solid place under me that I can count on, and that I can stay focused on it to keep my bearings. The attitude that Pema Chödrön recommends is to stop trying to find solid ground and instead learn to adapt to constantly changing circumstances—to accept what she calls “groundlessness.” The always-ready warrior wakes up each day, not knowing what path will be taken or what events to prepare for. It is our readiness for change that can provide some peace of mind.

That’s a simplified way to describe it, but (to revert to a little comparative religion) it took me a while to get my head around that idea, especially given the Christian idea I’ve grown up with that faith is a solid rock on which one can stand when everything else is shifting. So I was a bit suspicious of this claim that there is no solid ground.

Other aspects of  Pema Chödrön’s teachings have worked their way into my attempts to find peace. There’s that basic tenet of Buddhist and other contemplative traditions, staying focused on the present moment, for example. It’s been a huge challenge for me to stop projecting fears into the future, especially given my fretful temperament. I’ve always been one to imagine catastrophic possibilities when something goes wrong. It takes a lot of conscious effort to stay in the moment rather than replay past events or imagine all the infinite possibilities of the future.

As I read When Things Fall Apart, every chapter is a new challenge (like every day is a new adventure). This book can be frustrating and sometimes a little oblique, but underneath there’s a generous spirit and sense of love that is reassuring—or at least as reassuring as you might expect from an author who somewhat playfully advises that we “abandon hope,” because hope is a feeling that is coupled with fear. When we try to hope, we are trying to hold on to something permanent, to get ground under our feet:

Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can’t simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what’s going on, but that there’s something missing in us, and therefore something is lacking in our world.

This book is written in a long, flowing style that makes it difficult to pull quotes and make a simple point. Ideas build on each other, one chapter leads into the next in a way that doesn’t allow for much skipping around. Maybe the best way to summarize it would be to quote a blurb on the back of the book:

Pema Chödrön’s radical and compassionate advice for what to do when things fall apart in our lives goes against the grain of our usual habits and expectations. There is only one approach to suffering that is of lasting benefit, Pema teaches, and that approach involves moving toward painful situations with friendliness and curiosity, relaxing into the essential groundlessness of our entire situation. In the midst of chaos, we can discover the truth and love that are indestructible.

That’s the kind of challenge I’ve found throughout this book. How does one stop long enough to observe with mindfulness when confronted with fear and anxiety? Is it really possible to examine pain and strong emotions with curiosity? While it can be a heady, slow read, I’ve found myself drawn to this book as one of my tools for finding a balance of peace in the conflicts of always-changing medical issues.

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Five years after I thought I was done with external beam radiation, I found myself in the waiting room of the IMC radiation oncology center this morning. It’s a comfortable place, with frosted windows and blonde wood paneling, jigsaw puzzles scattered out on tables, and magazines, brochures, and “Look Good Feel Better” literature for women losing hair.

My old friends, the radiation tech crew, are still there. We bonded over 38 pelvic radiation treatments back in July-September of 2007, and now we have a shorter series of 12 whole-brain radiation treatments in the next couple of weeks.

This is, to say the least, an unexpected development.

Over the last two months I’ve had moments of dizzyness and blurred/crossed vision when standing up. Because we knew that I had tumors spreading up my spine and at the base of my skull, both my oncologists agreed that this looked like tumors spreading along the outside base of the skull, where they can press against nerves that end up in the ocular center of the brain. It started somewhat innocuously, and I didn’t think much of it. But through July the experience became more noticeable and episodes lasted longer.

So after my last trip to Vegas, we agreed that I needed an MRI to find out just what was going on. I made an appointment for that Wednesday and a follow-up with Dr. S to discuss the results two days later. Of course, the day after the MRI I came home to a phone message: “Dan, I really need to talk to you this evening.” Not the most comforting words to get on a phone message from your oncologist.

Instead of a clinic visit, I had an appointment with the radiation oncologist at IMC Friday. The MRIs showed three substantial tumors in the brain, with another smaller start-up about a quarter-inch wide.

WARNING: THE FOLLOWING PORTION OF THIS BLOG POST IS NON-HIPAA COMPLIANT

After we looked at the MRI slices on a screen with our new oncologist, Dorothy and I snapped a few photos off the screen just for a special souvenir. What else can you do when you’ve just been given such news? On the left below, between the eyes, an inch-sized tumor in the middle of everything, lurking above the pituitary gland. On the right, two tumors spreading out along the top left of the skull. I tried to find a glimpse of that third little starter, but don’t have a very clear image of it. It’s on the top right side of the skull.

Creepy, huh?

So I’m back in the external beam radiation room for a couple of weeks. It’ll take another few weeks after that to wait for results since radiation tends to act cumulatively and slowly. Maybe a little hair loss and skin burns along the way. And we will still keep up with the radium-223 trial to keep all the other bone mets at bay.

Really, what can I say except “another bump in the road”?

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