thoughts personal, public and everything in between

Wednesday, August 29, 2007

difficult decisions

"All flesh is as grass, and all its loveliness is like the flower of the field.
The grass withers, the flower fades, when the breath of the Lord blows upon it;
Surely the people are grass.
The grass withers, the flower fades, but the Word of our God stands forever."
--Isaiah 40:6-8
"I will give full vent to my complaint; I will speak in the bitterness of my soul.
I will say to God, "Do not condemn me; let me know why You contend with me!"
--Job 10:1-2

Karla & I met with Dr. Iqbal 2 weeks ago to decide upon our future course of action. It appears that I am no longer responding to my current chemo regimen. Plan B would involve numerous horrendous side effects in exchange for, according to medical data, 2 or 3 extra months. We have decided, for the time being, to stop chemo altogether and remain in the loop for promising clinical trials. We can always change our minds and go back onto chemotherapy.

The most difficult aspect of this is not that, from a scientific perspective, the 4-5 years I had hoped for now looks like something much shorter. Science does not always account for the possibilities of divine power through the prayers of one's faith community, not to mention the unique capabilities of each human body. Moreover, new breakthroughs in cancer research appear all the time, so who knows what could happen? The diificult part, rather, is that I have now begun to feel the physical effects of the tumors growing in my body.

In particular, I have developed ascites, a condition in which the liver produces and retains excess fluids. This makes it difficult to breath and places tremendous strain on my back muscles. (More than one mother has told me that I look and sound as if I were pregnant.) Every 4 or 5 days, I go to the hospital for a paracentesis, a procedure that usually draws 2-4 liters of fluid off my gut. I suppose one major consideration that would cause me to go back onto chemotherapy would be to learn that it could probably reverse this condition. We'll meet with Dr. Iqbal again next week to discuss this further.

I've also begun to come to terms with something that I've managed to hide from myself for a while: that I am struggling with some degee of depression. It's not that I sit around feeling depressed, but I do experience many of the symptoms normally associated with depression. I don't sleep well at night. The dark humor that I used to enjoy so much in the past now bothers me on a deep level. It's more difficult than before to read reports on Iraq, global warming, or political and economic oppression. Even in fiction, depictions of physical or emotional harm to human beings have become very painful to read or watch.

Here again, I find Job, the Psalms, and the Prophets so comforting. In addition to their cries for justice, words of praise and thanksgiving, theological reflections, and visions of a better future, the authors often express their fears and even despondency over the fates of their own bodies. God honors their most intimate emotions and embraces them into the divine breast.

What can I say? The question "how are you doing" is simply more complex than it sounds.

Thursday, August 16, 2007

The Madman of West Covina

The more we learn to allow others to speak the Word to us, to accept humbly and gratefully even severe reproaches and admonitions, the more free and objective we will be in speaking ourselves.
--Dietrich Bonhoeffer
Father, into Your hands I commit my spirit.
--Luke 23:46

Prologue—The Star Patient

Over the last month, I have undergone the strangest, darkest journey of my entire life. I plan to describe it in all its darkest detail, so I recommend that if there are kids under about 15 or 16 years of age, parents check it out first to decide whether they consider it appropriate reading.

The story begins on Tuesday, July 17. Having experienced critically low blood pressure levels for the previous 2 weeks, I finally collapsed in the elevator on my way up to our condo. At that point, I was taken to Huntington Memorial Hospital, which, unfortunately, our HMO does not cover. The next night, I was transferred to Queen of the Valley in West Covina. Let me say from the beginning that QV has perhaps the best ICU unit I have ever been to—something I attribute especially to the overwhelming care and attention I received from the nurses: RZ, Paula, Sharon, and Leslie.

The doctors, on the other hand, dragged me through hell during my first several days. To begin with, at least half of them were named Dr. Patel, an Indian name, suggesting a way of doing things that I would not understand. Nephrologist Dr. Shah kept telling me to sprinkle salt on my meals (a flavor I’ve honestly come to loathe), since he wanted to elevate my sodium levels. The wonderful oncologist Dr. Klein, whose Bronx roots I immediately identified, took time to explain to me in detail what was happening inside my body, as my abdomen began to fill up with fluids, and my groin swelled to at least 10 times its normal size.

The nurses called me their Star Patient, since it is such a rare treat to receive a patient who can actually communicate with them. I soaked it up. I find that during my first days in ICU I am an abnormally pleasant person, since it really does feel a bit like a retreat from everyday life.

The First Cracks

Within only 2 days, the utter absurdity of my situation began to set in. That morning, I felt equally certain that the ICU had helped me as much as it possibly could and that nobody intended to release me in the near future. Mom & Lynne had flown in for the day, and they & Karla had gone to grab some supper. In their absence, it occurred to me that the story would come full circle when the doctors determined that, although I was now in perfect health, I had become a menace to society and could not be released to the public. I sat for over an hour tuned in to a classical music station cracking up with laughter, like Inspector Dreyfuss at the end of The Pink Panther Strikes Again.

The next day, Dr. Shah came by for his 45 seconds to ask how I was feeling and repeat his daily admonition to sprinkle salt on my food. To describe my current condition, I used a couple of 4-letter words, and blamed it on him for giving me medical advice that utterly ignored my history and keeping me in the hospital after he and the others should have sent me home. (Karla later assured me that this was a terrible strategy for anyone hoping to go home in the near future.) I felt certain that staying in the hospital at this point could only make me worse, restraining my body from the kind of free-range exercise needed if it were to continue healing itself.

That night, I slipped into an infantile state into which I would pull out only sporadically for the next couple of days. Sharon, the nurse, came to check on me, and I was bawling, saying that I couldn’t let Karla see me like this, and asking whether I would go to hell for what I said to Dr. Shah. Later in the night, well past midnight, the same older man smelling of alcohol as every night came to empty my garbage. I asked him as well, “Do you think I’ll go to hell for using dirty words?”

“Uh, no sir,” he said, “I don’t think so.”

I continued, “Every night you come in here to clean out my garbage. You’ve been such a good friend to me.”

“Just doin’ my job, sir.”

Descent into Hell

Monday night, I was at last transferred out from ICU and into a hospital unit. On the way over, I inexplicably blacked out. When I came to early Tuesday morning, I found myself in a primitive looking room with a Catholic Crucifix hanging on the wall and 2 young Latino women bringing me ice water, one of them praising me for reading the Bible and reminding me that God always answers when we pray. I had been transported back into a 19th-century convent, into a Graham Greene novel. The myth was destroyed moments later, when the door swung open to the hallway and yanked me back into a 21st century facility.

Later that morning, the transporters took me into the lab where Dr. Molinet was to administer the paracentesis. The nurse soon informed me that there would be no such procedure that day, since the meds I had received made me an unsafe candidate. She walked away, and I sat, trapped in the dark, for the next 45 minutes. They stuck me right under the Patient’s Bill of Rights document, so that I could read their guarantees for patient participation making decisions, respectful treatment, and speedy recovery, all violated. They made me their victim.

The next morning, I woke up and went into the restroom, as I did every morning. That was the last thing I remember. When I came to at 11:30, I only knew that I had no memory whatsoever of what had transpired.

Apparently, the darkest corner of my id had broken off and taken over the rest of my person. (I knew this only because, somewhere in the course of those 4 hours, I had pulled the surgically implanted PICC-line out from my arm.) I remained lucid, if a bit confused, for half an hour or so, and then slipped back again for the afternoon.

I retain dreamlike images of what I said and did during that time. I remember thinking of myself as a philosopher, condemned to find out “why” when there is no “why,” and repeating incessantly “I don’t mean cause anyone any trouble, but I do.” I remember a string of people rotating past my bed—my nurse, my CPN, the Blond Person Whom I Want to Make Happy—and each time she entered the room I said, “I don’t mean to make you sad, but I do.”

By this time, Deb Flagg had shown up, so the 3 of us went outside to eat supper. Karla tells me that I didn’t eat much, but spent the entire time repeating in a loud Borat imitation, “I don’t mean to cause any trouble, but I do!” Soon Murray came, more amused than frightened by my display of insanity. As the 4 of us visited outside, Karla commented on the swelling in my legs. I reportedly responded, in the same Borat voice, “But one leg…,” as I reached toward my grotesquely swollen groin and began to pull off my sheet. The Blond Person Whom I Want to Make Happy persuaded me not to do this.

By nightfall, I had returned to my normal self enough to listen to the horrid stories of what had transpired during the day.

I think I remained fairly stable throughout most of the next day, Thursday, until Eric, Todd and his son Nick showed up late in the afternoon. At about that time, I descended again, this time without the Borat routine, into someone whose hope lay in the promise that one day we would all be taken to Yosemite. I lay in my bed asking to walk down the hallway whose walls were covered with pictures of Yosemite, but barred because the nurses were pumping medications into my arm. When at last they released me, I walked slowly, tracing the outline of the mountain depicted in each picture, and proceeded toward a stairwell from which one could look out a window toward the mountain range.

“Do you know the names of those mountains?” asked Todd, as he stood behind me, holding me steady. I didn’t—some foretaste of Yosemite, I guessed, but not the real thing. Not yet.

In my imagination, family members had been dubbed “in-laws.” I had around me my mother-in-law, my Todd-in-law, my Nick-in-law, and my Eric-in-law. In-laws were the people you could touch, hug, and kiss. You could even remove their caps and touch the tops of their heads. To lose one’s mother-in-law meant to begin to die, so when Todd, Nick, Eric & I went to the elevator to see Eric off, and Mom stayed back at the door to my room as it receded into the distance, I knew that I would die soon and go to Yosemite. I would have liked Eric to join me there someday, but he didn’t believe in Yosemite.

As Eric stepped onto the elevator, someone mentioned the name of our niece Kelly. It occurred to me that Kelly should have been with us. The fact that she wasn’t suggested that she was already waiting for us at Yosemite.

I don’t think Eric believes in Kelly, either.

Once we had returned to my room, family members all left, but I had more to do. At some point, I got up from my bed, walked out of my room, and wandered down the hall toward the stairs and elevators. The nurses caught up with me in time to prevent me from entering, but, as it turns out, the madman has about 10 times the strength of my normal self. It required 3 nurses and 2 security guards to pull me back from the stairs and force me into my bed, where the awesome sense of liberation I experienced as I wandered the halls and lingered around the elevator and stairway gave way to the realization that I was a crippled oddity, bound to medications by people I neither knew nor trusted.

Once in bed, the madman understood the whole system. The nurses had, at some point in history, gained domination over the rest of us. Now they sat in the halls in their privileged seats behind their computer screens, as people in suits walked freely about and entered the elevator whenever they wished, and we patients in our beds lay hooked up to their medications, powerless against their experiments. Atop the whole sinister system sat the unseen evil force whose name appeared on the dry erase board facing my bed: Dr. Patel.

Home at Last

I remained sane all day Friday, my birthday, and was sent home on Saturday. I had assumed that, having left the hospital, I would experience no more madman episodes. All the visual cues that sent me over the edge were there at the hospital—the dry erase board with the names of my captors, the hallway with exit signs that led to nowhere. But I was mistaken. For several days after my release, the madman continued to resurface. The elevated ammonia level on my brain appears to be the main culprit, and I think we’re getting on top of that. I haven’t had an episode now for about 10 days.

I’ve learned a lot through all this—2 things in particular. One concerns both the importance and the difficulty of Bonhoeffer’s admonition to receive the words that God gives to others. I’ve become quite dependent upon (and resistant to) the instructions and boundaries set up for me by Karla and my mother. I don’t have to tell you how passionately my pride fights back against these invasions of my independence, but this is what it means to say that my life does not belong to myself.

The other concerns the people who keep us tied to the real world. I encountered the madman during a visit to my oncologist, and all the way home I could not convince myself that a real world existed outside the dreamscape of my car. Karla & Mom both assured me that it did, but how good are the assurances of characters within one’s own fantasy? What finally pulled me back were names and faces of people outside the car, people whom I could not now see—Lynne, Todd & Eric, Dad & Carol, Don, Aunt Doris; the Eckardts, the Roes, the Needs & the Lanes from up north; Glenn & Shanti, Deb & Murray from here in LA, and so many others. These are the people, the communities God has allowed me to participate in, who pulled me out from insanity and drew me back into the land of the living.

Tuesday, August 14, 2007

a quick note

My apologies for the month-long silence. It's been a bizarre and difficult several weeks, and I am currently working on a rather lengthy post describing my recent stay in the hospital. My energy level is quite low, so I've been unable to spend more than 15-20 minutes at a time writing. For now, I just want to leave a brief message saying, yes, I'm still here, and I'll return with more shortly.

Thank you are for your prayers and words of encouragement.

Thursday, July 12, 2007

a burden lifted

Unless the Lord builds the house, its builders labor in vain.
Unless the Lord watches over the city, the watchmen stand guard in vain.
In vain you rise early and stay up late, toiling for food to eat--
for he grants sleep to those he loves.
--Psalm 127:1-2

As many of you know, I've been preparing a sermon to preach in German this Sunday at Christuskirche, a small German church in Glendale; and as most of you suspect, mein Deutsch ist nict so gut. Over the last two weeks especially, this has been an all-consuming project and a huge weight on my mind.

Yesterday I spoke with Doris, the church secretary. As it turns out, most of the members speak English more fluently than German, but attend in order to regain and nurture their cultural heritage. On a typical Sunday, the pastor preaches in German while an English translation of the message appears on the overhead. The person who operates the visual equipment told Doris recently that he would be gone this Sunday, so she suggested to me that if I would simply preach in English I would have better luck communicating with the group as a whole and make her job a lot easier. I have gladly complied.

Whatever embarrassment or disappointment this change in direction might bring me is more than atoned for by a sense of utter relief. I really don't see this as a failure. My main goal was to stretch my German skills, and that have I certainly done. By now I have well surpassed any abilities I had a couple of months ago. To prepare and preach an entire sermon in German, however, is still a little further beyond the boundaries that I would be able to cross within the next several days. By now what I want most is to bring the community something instructive and encouraging from the Scriptures and to communicate it clearly, speaking from a place of grace and calm, and not from a place of anxiety. I will do that much better in English. I slept well last night.

Otherwise, I'm having a bit more difficulty than I often communicate. When people ask how I'm doing, I automatically give a response that focuses on the positive and avoid saying too much about the more troubling things that afflict my mind and body. This is not entirely evasive, since being with other people tends to build me up and take my mind off my own problems. The truth, however, is that I badly want to be prayed with and prayed for, to confess my struggles, fears and sins to another human being who will listen, bear them with me, and point me back to Christ. It's not that God hasn't given me an abundance of such friends. I simply tend to hold back from them.

My blood pressure still gets low enough that when I say I'm out of energy I don't simply mean that I feel like taking a nap in the afternoon; I mean that often I can't stand up long enough to do the dishes or vacuum the floor. Moreover, it appears that I may need to change to an entirely different set of drugs, whose known side effects could include an inability to eat or drink anything cold, a particularly formidable scenario in the middle of a Pasadena summer. I'll find out in early August. These things by no means constitute my whole reality. There are times when I feel energetic enough for a brisk morning walk, when I can relax my mind and heart, when any sense of fear or victimization are far away from me. But I do ask for people's prayers. I just don't ask often or candidly enough.

I should clarify. What I absolutely do not need right now are suggestions or words of advice. There is a time to evaluate and fix someone's problems and a time to walk at someone's side in patient and compassionate silence. A time to cure and a time to care. Nor, really, do I need expressions of grief over my situation. The tragedy is not that I am facing a terminal illness. The tragedy is that I exacerbate my situation by becoming so isolated in my work and fighting so hard against my limitations that my daily tasks turn into a ongoing war against my own self. This is my besetting sin, and I've learned from Scripture and experience that the way forward begins with confession to a brother or sister who will listen, pray, and mediate God's grace to me. What I hunger for right now--and what I am so strangely reluctant to ask for--is that kind of human fellowship. And this is what the body of Christ is for.

Saturday, June 23, 2007

con patienti

Without mud you cannot have lotus flowers. Without suffering, you have no way to learn how to be understanding and compassionate.
--Thich Nhat Hanh

Bear one another's burden's, and in this way fulfill the law of Christ.
--Galatians 6:2

The English word compassion comes from a Latin phrase which translates literally into "suffering together." It has less to do with virtuous condescension from one's place of comfort to show kindness to someone less fortunate than with profound and existential solidarity with suffering humanity. To show compassion requires a personal, nonresistant encounter with pain.

This, of course, calls immediately for a number of clarifications. The first is that there can be no general principle explaining the meaning of suffering or prescribing how one should respond to it. All pain is not the same. More often than we know, one person's misery is the result of another person's injustice--physical and mental abuse, imbalances of social and economic power, negligence on the part of wealthier nations toward the poverty and violence that their habits of consumptions create in other parts of the world. This kind of suffering must never be glossed over with platitudes about God's mysterious ways or the power of individuals to create their own realities. It must always be exposed for the evil that it is, fought against and vehemently protested.

On the same note, I do not believe that suffering comes from God or stems directly from some divine purpose. Pain is not good, even though it is redeemed. It is an aberration, one that, like sin itself, finally bends to the liberating work of Christ in the world, but an aberration all the same.

For this reason, I am all for using of whatever truthful means are available to alleviate it. There is, of course, no wisdom in pursuing or holding onto pain for its own sake. When my body suffers, you'd better believe I intend to do something about it.

Fourth, I do not mean to suggest that those who have suffered serious personal injury, illness, loss or hardship thereby possess some special virtue that others do not. These experiences can harden us as easily as they can soften us. Besides, those who are not hit with their own individuals tragedies can and often do step willingly into the experiences of others and bear their burdens alongside them, almost as if they were their own.

Having said this, I can't escape the fact that I and virtually everyone I know live in such privilege and comfort that the ease of our existence no longer strikes us as exceptional. Such lives are breeding grounds for self-absorption. Keeping one's own good fortune undisturbed tends to become too high a priority, and this, frankly, makes us bad citizens of the world. The distance between shutting out awful experiences and shutting out the people and realities that make us vulnerable to such experiences is short.

In this morning's sermon, George mentioned that when Michelangelo produced his David, he is reported to have seen the sculpting already in a raw slab of marble, and then chiseled away whatever wasn't David. I have no idea whether there is any basis for the story, but it applies well to the question of suffering. Sometimes affliction chips away at complacency so that one's truest self can come to the surface.

I keep hitting up against this paradox, that joy and sorrow exist inside each other. They are not parallel to each other; at least according to the Christian faith we are moving toward a day when the one will finally swallow up the other. But for now, truthful engagement with the world produces both. The Man of Sorrows and the Prince of Peace--the Crucified and the Risen One--are one and the same. I know a number of people who understand this, and it is a source immeasurable comfort to be able to talk openly with them--sometimes with overwhelming fear, and sometimes with no fear at all--about the awful reality that confronts us.

No, there is no value in obsessing over the pain in the world or in one's own life, but sometimes you can't ignore it without deceiving yourself. When that's the case, the best thing may simply be to lean into it.

Wednesday, June 20, 2007

twists and crashes

Been a hectic and challenging several days out this direction. To begin with, on Friday evening my laptop crashed, and I was unable to reboot. After several sessions with Dell tech support over the next 24 hours, it became clear that my hard drive needed either repair or replacement. Until now, I've been one of those PC users who think to back their files onto a CD every year or so, if at all, so by bedtime Friday I found myself wondering what I might do with the rest of my life now that my dissertation was gone forever. In addition, I assumed that a new hard drive, if it came to that, would cost several hundred dollars, so whatever my future looked like, it may not include having access to my own computer for a while.

Tony Nguyen, in northern Pasadena, runs Connectionz PC Repair out of his home. On a number of online ratings pages, normally dominated by computer-savvy consumers eager to complain about the repair (dis)services they've endured, Tony has consistently received high makrs from throngs of satisfied clients throwing palm leaves in his path. I gave him a call. He was friendly, professional, and able to explain things clearly with none of the annoyed techie condecension I've encountered so many times in the past. Less than 24 hours later, he has already retrieved all my files, and is now working to see what kind of repairs need to be done to get my laptop up and running again. Very worst case scenario, the whole operation should cost less than a fourth of what I had feared.

It would be unprofessional for me to throw my arms around him and sob, "love you, man!" So I'm letting it go with a check and a handshake. But he relies entirely on word-of-mouth for business, so there. He's getting mine.

Meanwhile, rising summer temperatures have created new problems balancing out fluid retension and blood pressure. The heat causes my body to retain more fluids than usual (not to mention that it just makes me thirstier), and exacerbates the drop in blood pressure when I use diuretics to flush the excess fluids out. The problem has not reached anything like those that drove me into the hospital 3 months ago, but I have to stay on closer watch than usual to make sure it doesn't. Most days, I do alright until about 6pm, and then I tank. I suppose fixing supper has something to do with it.

The real news, however, is that on Monday my oncologist went over the results of my latest CT-scan with me. It turns out that in the last 2-3 months, all of the tumors have grown slightly. This is not as alarming as sudden massive growth, but significant enough to raise the question whether I need to change treatment plans. Within less than a year, aggressive cancers typically learn how to resist the drugs sent out to fight them, so we've known all along that I would eventually have to switch to an alternative to the gemzar-xeloda treatment I've been receiving. The next option woud entail wearing a pump for a couple of days every two weeks, going in for slightly longer injections, and receiving a medication that would cause me to react to cold drinks. (The last part actually troubles me more than the other two.) The plan for now is to keep me on Gemzar & Xeloda for a couple more rounds, then then take another scan to see whether I've reached my turning point.

The news has served as another reminder how little I can predict my future. What began as "I'll be okay as long as I have another 3 or 4 years left," and slowly evolved into "just let me make it for a while beyond graduation," and into "let me see another Christmas, another Easter, another jacaronda season," is now best expressed, "Give us this day..." In light of my propensity to obsess over things I don't know, this is not an entirely bad place to be.

Saturday, June 09, 2007

personal update

I'm pleased to say that last Saturday night, through the mercies of God and Ambien, I slept like a rock for about 10 hours. Through the first part of the week, I pulled off a couple more very good nights' sleep (med-free, thank you very much, but taking advantage of an over-the-counter melatonin supplement). There have a few bad nights since then, and a general sense of fatigue throughout, but today I'm enjoying a pretty high level of energy for the first time in nearly a month--the kind of energy that, for a change, doesn't dissipate after 20 minutes of washing the dishes or folding laundry. In fact, Karla & I have put in quite a full day today, and not until late into the evening did I begin to feel noticeably drained.

But I've discovered something troubling in all this: recently I don't have the same kind of peace or courage that I had a few months ago in the face of my situation. I still maintain a fair amount of cheerfulness throughout the day, when my coping mechanisms are strong enough to keep unpleasant thoughts at a distance, but in the night I know that I am afraid, that I resent every reminder of my prognosis, that my efforts to plan the shape of any future day without regard for its unpredicted setbacks and limitations are built on an illusion. Six months ago, I found strength in looking realistically at the fact that I had an incurable disease, that I would face a difficult struggle for the rest of my life, and that I could take nothing for granted. This was the truth, and those who believe in a loving and trustworthy Being at the core of all reality need not fear the truth. Now I find strength in not thinking about it. A false strength.

There are two interpretations of this, both valid and perhaps complementary. On one level, the pressures of completing my dissertation in time to graduate next year, coupled with disturbances in my sleep patterns, have pulled me away from the kinds of mental, spiritual, physical and relational activities that renew my faith and my openness toward the world on a daily basis. If I am to carry through what I have set out to accomplish, I can't float passively from one day to the next, working when I feel good and not working when I don't. I have to exercise control over my schedule, and as the combined effects of chemotherapy and heart damage wrest that control out from my hands, I become obsessed with getting it back. This obsession, in turn, infringes upon every other dimension of my life--and certainly contributes to my insomnia.

On another level, my ability to face my situation has not really changed that much since six months ago. I'm just a few steps further down the path, and I know things experientially now that I could only envision abstractly then. I'm no longer imagining but traveling the often exhausting journey of living with cancer. The peace that sustained me over Thanksgiving and Christmas is maturing, a difficult process that calls for confrontations with new challenges, new fears, and a deeper kind of trust than I've had before.

Either way, this is a wake up call. I can't put off serious reflection on my inner disposition. This isn't about some abstract moral responsibility to maintain a positive attitude or keep a stiff upper lip (God save us from such pretensions). It is about staying physically, spiritually and relationally alive. The faux peace preserved by diverting my attention from things that don't go away will destroy me in the end. There is real, life-giving peace to be found in honest acknowlegdement, wrestling with God, and learning again to trust.

Not surprisingly, talking it through in this post has taken me a huge step in the right direction. As I've been discovering all along, keeping an online journal has played a role in my own well-being, beyond whatever benefit it may bring to others. (So yes, Greg, I will continue blogging as much as time and energy allow, dissertation be damned.)