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Archive for the ‘spirituality’ 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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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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in awe of art

The BYU art museum has an incredible exhibit of artwork by Danish painter Carl Bloch. The central focus is on a series of large altarpiece paintings that were done for chapels in Denmark in the 19th century.

It’s difficult to describe how impressive these paintings are if you don’t see them in person. They are very large, 10 or 12 feet high, and invite a long, long look. Even though there are lovely reproductions (and some of these are well known as illustrative Christian art), it’s an entirely different experience to stand (or sit) and take in the beauty of these works.

We bought a giclée print of this Gethsemane painting. A little JPG image can’t begin to do it justice. I found myself drawn to this painting, and wished I had more time to sit and absorb it. The exhibit is well-run and usually busy, with people walking through several rooms attached to headphones and iPads with video information about the artist and paintings. I was with a group of friends and we had to wait in some rooms for a chair to be free so we could sit and look. I found, as with several of the altarpiece paintings, that I wanted to look and look, walk from one side to the other, sit in a meditative way and try to take in the painting.

When you see it in person, the brush work and details are amazing. Stars in the dark sky, the sweep of brush strokes that reinforce the visual structure of the painting, the gentle details of hands and the protective posture of the angel… There’s so much to see. And as you see, you identify with the painting. You feel Christ’s anguish, you feel the tender gesture the angel offers. You sense the contrast of dark and light. It’s so much more than an illustration of a scene. It’s a great piece of art that challenges and invites you to … not think, or just feel, but experience the work as a whole.

I think I understand better how Catholic writer Henri Nouwen was able to write an entire book (The Return of the Prodigal Son) about his experience with a single Rembrandt painting. He traveled to the Hermitage in St. Petersburg and spent two days simply sitting and looking at Rembrandt’s large painting. He wrote a lovely book that used the details of that painting as a starting point to explicate the parable of the prodigal son in the New Testament. Having had a short time to experience these large works by Bloch, I can see how it would be possible to spend hours looking, experiencing, and looking more as the work’s meaning is revealed.

In a time when art is being taken over by technology, it’s a rare experience to return to the roots of hand-crafted artwork that has such power. I didn’t care much for the iPad videos and quotes from various art and history professors. I found they were distracting compared to the awe I felt simply standing and looking at these masterpieces.

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four years

February 23, 2007: My urologist phones me at work at 2:00 in the afternoon to tell me that my biopsy is positive. I have prostate cancer.

Life as I know it disappears.

Four years that seem like at least ten. Physical changes, emotional upheaval, losses and losses and losses again and again.

There is one constant loss through these years: the loss of certainty. There’s no planning for the future, only short-term decisions and doing what I can do, here and now.

I’ve met many good people in these four years, people who have taught me about life and living. Some have gone into remission and moved on. And I’ve lost some friends to cancer, good people who watched the inevitable happen and met their deaths with grace and peace.

Life is fragile. Love endures.

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Since my first Walkman in the early ’80s, I’ve tended to carry music around with me, listen in the car while driving, listen while walking or jogging, listen while at work. I’ve driven my family crazy with music playing, especially because once the music’s on, I don’t listen to them as attentively.

Some calm music can carry me along in a reflective sort of way. That’s usually how I like to unwind: a quiet walk with equally quiet music.

[from Emile Bremmer's Flickr set]

In the last couple of years I’ve tried meditation as a spiritual and health practice, but I’ve been frustrated with the shift from busy mind to quiet mind. It’s not an easy change to make, especially in a culture where sounds, images, and words are constantly in motion around us on television, billboards, radio, and any retail experience.

In the last month or two, I’ve spontaneously turned off the music. I drive to work in silence (interrupted only by my cajoling stupid drivers). I leave the radio off. I limit the iPod to maybe an hour at lunch, at the most. I didn’t consciously try this, but I’ve found a quiet mind anyway. Now, music is a choice, not a continuous background in life. And I’m loving the quiet.

[M.Shirani Flickr set]

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The last month has been really, really hard on many people I am close to.

My PSA numbers are rising again, which means my current hormonal therapy is no longer effective. I’m trying to get into a new drug trial but have to travel to Las Vegas for it. For the first time, I’m starting to feel little twinges in my bones. There’s a new seriousness to my cancer treatment.

My future sister-in-law, who has been living with an undiagnosed illness—believed to be lupus—for many months, was finally diagnosed accurately: lymphoma. She’s in the hospital with intensive chemo and new immune system therapies.

My wife’s nephew, a proud Marine serving in Afghanistan, was killed while escorting a prisoner.

It’s been a ridiculously bad time, the last few weeks. Family members on all sides are dealing with horrendous stress, with grief, with uncertainty. It brings so many uncomfortable moments into our interactions. While I completely appreciate how much others want to be helpful, we’re all just awkward humans trying to figure out what to say, what to do, how to help.

One of my favorite thoughts by the late Henri Nouwen showed up in my email the other day. It’s a fine reminder of how to be there for people.

Being with a friend in great pain is not easy. It makes us uncomfortable. We do not know what to do or what to say, and we worry about how to respond to what we hear. Our temptation is to say things that come more out of our own fear than out of our care for the person in pain. Sometimes we say things like “Well, you’re doing a lot better than yesterday,” or “You will soon be your old self again,” or “I’m sure you will get over this.” But often we know that what we’re saying is not true, and our friends know it too.

We do not have to play games with each other. We can simply say: “I am your friend, I am happy to be with you.” We can say that in words or with touch or with loving silence. Sometimes it is good to say: “You don’t have to talk. Just close your eyes. I am here with you, thinking of you, praying for you, loving you.”

Our family is missing Nigel terribly. The children spent time hiking with him in the summer, sledding with him in the winter, and saw him at so many family get-togethers. We saw him briefly last fall, but he was deployed before the holidays. We all assumed we’d see him again sometime this year. His funeral was last Saturday. It was terribly sad and very uplifting at the same time, as hundreds of neighbors and friends and family members gathered to honor him.

I wish I could travel to Chicago, but I’d probably be in the way at this point. Ed has been very conscious of what I’ve gone through in the last three years, and has consistently called and discussed treatment options and new research with me. Ironically, he’s now deep in the trauma of watching the woman he planned to marry last year suffer through cancer treatments. I don’t know that anything I could say would be helpful.

All these things should be overwhelming, but for whatever reason, I’m staying stable. Just sad, feeling the weight of mortality.

(sorry, can't remember where I found this photo...)

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tired of miracles

NearMonticelloUtah(photo by my neighbor Joe; hope he doesn't mind if I use it)

I live in a half Mormon community, which itself is unusual for Utah. We have a lot of people who have moved here from out of state and for whatever reason our neighborhood on the mountain contains equal numbers of Mormons and non-Mormons, as we call them. I like that diversity, although I have to admit I’m not much of a neighbor to either the church-goers or the gentiles.

Three weeks ago I started a triple androgen blockade, which means that I’m now taking three drugs to shut down androgens (male hormones) in various ways. We hope that will also shut down the cancer growth for a while. I’m not in a very different place than I was when I was just on Lupron: still fatigued, depressed, and not very sharp mentally. So it’s easy to lapse into negative thinking. And so, I’ll indulge myself just a little.

Mormons like miracles. They thrive on stories of subtle spiritual promptings that lead to dramatic rescues or averted disasters. They love to hear about prayer and priesthood blessings that end in healing. If you spend much time with the Ensign, the official church magazine that comes out every month, you know that miracles are the fuel for this religion. Miracles, and obedience. (But that’s another topic.)

Since my diagnosis and surgery in the spring of 2007, members of my ward (our local congregation) have been asked several times to remember me in their prayers and even to fast for my health and recovery. I am deeply grateful that anyone would be willing to do these things for me; I’m not much of a neighbor, as I said, and I don’t often trouble myself about anyone else’s needs. It has been touching that people will spontaneously tell me that they and their family mention me in their prayers.

The difficult part is that I feel that I’ve let them down. They prayed for a successful surgery, and while it was successful in many ways, I had to move on to radiation treatment. People prayed for me during the radiation treatment, and for a few months after it was done it looked like I might have shut down the cancer for a while. But it came back, quickly, and so people prayed for me again when I had to go on long-term hormonal blockade therapy.

On my own, I’ve let go of expectations about miracles. Having studied the Book of Job in some depth in the last couple of years, I’m comfortable with the gist of that story: to those who question “Why me?” to God, the answer comes back clearly: “Who are you to question me? I created the universe!” I love that slap in the face to all the characters in the Job story who think they have life and adversity figured out.

What I am not comfortable with is my failure to provide a miracle for my ward and family members who have prayed and fasted in my behalf. I try not to be sensitive in this area, but it’s starting to really annoy me when people stand up in church and thank God for answering their prayers and healing someone or leading them out of some difficult situation. They are seeing miracles, and after so many of these stories, my first question is, why not me? Don’t I pray just as earnestly as the next guy for my health? Do I lack faith? Do I not deserve to be healed? These are unspoken questions that are starting to get in the way of my sense of belonging in the church. Like I said, in my own heart I’m OK with whatever the outcome will be. Well, I’m not totally OK with the idea of dying sooner than later. But I’m clear on the point that it’s not about me.

I’m getting tired of miracles. People who share miracle stories are so sure that God fixed their problem just because they asked. Or they feel that they have a right to miracles because they’ve earned them with righteous living. Or there’s a quote I saw recently that I really don’t get:  “A miracle is the natural result of the application of true, eternal principles.” Don’t get me wrong: I do not for a minute begrudge anyone else their miraculous healing or their sudden change of fortune. I’ve had my share of great things happen in my life, and I know the feeling that maybe fortune, God, or the universe is smiling down on me.

Just for today, though, I’m tired of miracles. Can’t bad things just happen now and then? Do I have to find a silver lining behind this particular cloud?

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