Choosing Life

While I was in the hospital last month, a friend of mine from school sent home with Steve a book called My Grandfather's Blessings by Rachel Naomi Remen, M.D. The author is a doctor who counsels patients with life-threatening and otherwise devastating illness. She herself is a fellow sufferer, having had Crohn's disease since she was 17 years old. Her grandfather, who died when she was seven, had been an orthodox Jewish rabbi who managed to pass along to her much of his wisdom before his death. Although I did not read this book while I was in the hospital, I picked it up last week, thinking it might be just the right kind of reading. I shared with you earlier how difficult it has been for me to read novels because I am having much trouble right now following a lengthy narrative over hundreds of pages. This book is comprised of very short chapters that do not necessarily build on each other, although certainly there are thematic elements that are woven throughout the book. It was the perfect read for me, and it is a wonderful, powerful work. I highly recommend it and would like to share just a few of the ideas that comforted me as I read.

As my surgery date nears (two weeks tomorrow), I am beginning to be fearful of the procedure. It seems so wrong to me that someone will be shaving my head, slicing through my scalp, sawing through and removing a piece of my skull, cutting through the membranes that protect my brain, and being right there. It makes me think of the ancient Israelites and their belief in the power that lay in the holy of holies, that part of the temple where the ark of the covenant was kept, where only the most devout high priest could go. Some might argue that the heart is the "holy of holies" of the body, as life could be sustained without a brain as long as the heart were still beating. I disagree. For me, the brain is it. Who we are, what we are capable of contributing, how we live and laugh and love, all lie in the power of the brain. And so if there were any way I could escape this surgery and remain healthy, oh boy! That is the path I would choose.

However, as Remen writes, "In my experience, no one ever really chooses surgery or chemotherapy. People only choose life and then welcome whatever means are offered to them in order to have it" (278). And so this is it, I suppose. I choose life. It is ironic that although my life was much busier before I became sick, it was not fuller. It was hectic and fast-paced and crammed full of activity, but I think I could argue that I am living more meaningfully now, when my days have been stripped of most extra activities. I go to school, do a little teaching, and come home. If I'm lucky, the Yankees are on TV (they better be--we're paying enough for them!) and the kids are at home and I can cook dinner and share a meal with them. When Steve gets home we might watch a little TV. I'll read a little, maybe write a little, laugh with the kids over something silly that happened to one of them at school that day. But that's about it.

If you could have seen me a few months ago, it was a different story. I often didn't get home until late at night. I studied constantly. I wrote pages and pages of literary analysis. I graded student essays. I read and prepared and lesson-planned for school. And read and prepared and wrote for my graduate classes. I sure was busy. But I wasn't having any fun. Don't get me wrong. Having a tumor isn't fun. Preparing for brain surgery isn't fun. Spending a week in the hospital with meningitis is about as far from fun as you can get. But my new pared down life is a better life. Spending time with my kids (who are getting pretty close to grown) is fun. Watching baseball guilt-free because there is nothing else I should be doing instead is fun. Cooking for my family is fun. Serving a few hours at church is fun. Spending "chair time" with my husband is fun. And slowly it is becoming clear to me that this is a life. That the stillness I am experiencing now is where the real value in life lies. I don't have to be busy to be living. In fact, my hunch is that it's better not to be.

In this stillness, I am finding it easier to pay attention to what matters most. And what I have decided matters most are our dealings with other people. Places don't matter. Possessions certainly don't matter. People do. This is a lesson Dr. Remen learned from her grandfather. In one of the best chapters in the book, she describes the Jewish custom of the lighting of the menorrah during Hannukah, and the way in which each candle is lit from another. She writes that her grandfather told her, "the story of Hannukah says that God's light burns in the darkness even without oil, and it is so. That is one of the miracles of the light. But there is more. There is a place in everyone that can carry the light. God has made us this way. When God says 'LET THERE BE LIGHT,' he is speaking to us personally. He is telling us what is possible, how we might choose to live" (130).

Yes. This is a worthy choice, to bear light. To bring light to those who are in darkness. Not to own more things, or to visit more places, but to take care of more people. To be a blessing to them, and to the world because of them. We are here for a short time. What we do here matters. How we choose to live matters. For me, I choose to be light.

Cheddar or Jack?

I was in a Del Taco last week when I had a disturbing experience. For those of you out-of-towners, Del Taco is Mexican fast food--cheap, tasty, and my favorite since high school. Ordering there is usually a no-brainer for me: one green burrito with extra cheese and sour cream to go, please. In case your doctor hasn't made this perfectly clear, there isn't anything remotely healthful in said green burrito. Not the beans, not the cheese, not the flour tortilla, not the sour cream, and especially not the extra cheese. If your cholesterol was in check before you indulged, it isn't now.

However, on this Sunday morning I was feeling like something a little different, most likely not from a health consciousness but out of sheer boredom. So I looked up at the menu board, saw pictures of two chicken quesadillas, and decided on one of those. But which one? They both looked yummy, but there was something about that green sauce, the white cheese--yes, that's the one for me. So I stepped up to the counter, ordered the chicken cheddar quesadilla, and took a seat.

When the food arrived, however, so did the tears. Cheddar isn't the white cheese! Monterey Jack is. Cheddar is the yellow cheese (which is really orange, but that's a blog for another day). An innocent mistake? A little thoughtlessness? Maybe. But this episode is representative of the way it is for me these days. Factoids I used to know, have known since I was four years old, escape me. My whole life I've known that Jack is the white cheese, the one I like. But on Sunday at Del Taco I didn't know this anymore. You can bet I know it now, but I had to relearn it, unfortunately with a little emotional trauma thrown in as reinforcement.

Since recovering from meningitis, my memory has been woefully slow to respond. Some things I never remember, no matter how long I dwell, and I finally have to ask. If I have nothing planned on a given day, nothing to look forward to or to mark the day as different than any other, I often don't know what day of the week it is. A few weeks ago I had to ask students four different times to tell me--it was Tuesday each time I asked but I just couldn't remember. Steve will often have to recount an entire conversation before I will remember that we even had it. Almost nothing has survived from my hospitalization and very little from the weeks immediately preceding it. Even some long-term information, like minor characters and locations from novels I have taught ten times, seems to be gone.

More than that, my attention span is about four minutes long. Even though I started a lovely book (Confessions of an Ugly Stepsister, Gregory Maguire's take on the Cinderella tale), I've pretty much given up on it. After reading for about ten minutes, I can no longer remember what I read earlier. And if I put the book down for a day or two? Forget about it! I have no notion of who these characters are, what their relationship is to each other, and why I should care. And my hunch is that this is a really good book. Believe me, I've read plenty of books where all of that was the author's fault!

Apparently this is normal. Meningitis is ferocious; it is a brain disease that mercilessly attacks neurons in all areas of the brain, and the effects are manifested in a broad range of after-effects, memory loss and lack of concentration being the two most common. Fortunately, the concentration issues should resolve within six months to a year! Some of the memory lapses are temporary; others are permanent. As my doctor explained, I will have to undergo relearning for much of the information I once knew and have since forgotten.

On a cognitive level, I am alright with this. I can learn. I'm actually pretty good at it and even like to do it. But to know that I am relearning, that I knew this once and that instead of learning new, interesting tidbits, I'm filling in blanks, is a little depressing. In addition, I honestly feel a little bit of what it might be like to have a learning disability. I know for a fact that if I were in school right now, sitting in a graduate level literature seminar as I have been most evenings for the past year, I simply could not do the work. I couldn't possibly read with the level of comprehension necessary, and I'm not sure I would be able to recall the literary tools I once had at my fingertips in order to complete the analysis of literature that was once second-nature to me.

I am promised that this will improve, that I should return to a similar level of functioning as I had before I got sick. However, I am also promised that both the memory loss and lack of concentration will first get worse. One of the results of brain surgery is, of course, that the brain is exposed to air. As a prominent neurosurgeon explains in his book, "You ain't never the same when the air hits your brain. Yes, the good Lord bricked that sucker in pretty good, and for a reason. We're not supposed to play with it" (Vertosick 22). And so even if the surgery is a smashing success, there will be at least subtle side-effects that, similar to those accompanying meningitis, will most likely resolve over the first one to two years post surgery.

This deficit is humbling. Putting my brain to work always came pretty easily, and now it doesn't. So how do I cope? Well, on good days, I enjoy the freedom of watching a Yankees game knowing I have absolutely nothing else to do. I am cooking again and enjoying it (but only buying white cheese). I read guilt-free. If a story is too hard, or not engaging enough, I don't finish it and don't sweat it. On the bad days, I feel depressed that my master's plan has been pushed back. I worry that I won't be ready to manage my workload when school resumes in September. I cry that what once was easy for me is now really hard work. Too hard, so that I don't even want to try. I miss books.

But this too is part of God's molding of me. I understand a certain population of students in a new way that will increase my compassion for them. That's good. When I am back to my old self, I will not be able to take my strengths for granted. That's good, too. And if I don't get back to my old self, if some things remain too hard for me, I will find new ways to learn and grow and find fulfillment in my life. That seems especially good.

In baseball, as in life

The Yankees won a remarkable game last night, coming back from the dead, as it were, from a score of 10-1 in the third inning to a winning score of 14-13 after nine. Poor pitching and the absence of three of their most potent batsmen (Giambi, Sheffield and Matsui) created the need for the Yankees to rally from behind on three separate occasions over the four-hour game. But they did, and in the end they prevailed.

The two most notable moments for me both involved the team's longtime catcher, Jorge Posada. In the top of the six inning, with two outs and a man on first, heavy-hitting Texas Ranger Hank Blalock shot a ball down the left field line for a base hit. Because Melky Cabrera, a newly called up, very young prospect filling in for the fractured Matsui, bobbled the ball, Mark Teixeira, all 6 foot 3, 220 pounds of him, hauled his booty from first base all the way to the plate. Cabrera threw to Jeter, his cut-off man, who gunned the ball to Posada. A brain-rocking collision ensued as Teixeira squared up a shoulder to knock the ball from Jorgie's glove. No dice. Posada held on, the third out was recorded, and the Yanks saved a grim 10-5 deficit, which would become significant when, in the bottom of that inning, they would score six runs, including a three-run homer by recently much maligned Derek Jeter. Not clutch? Don't tell me that.

According to post-game interviews with several key players, the spirit and sheer grit Posada showed on that play was all the impetus the team would need to fuel an unlikely and historic comeback. Each player took to heart Posada's example and determined that they would play with as much fire as he had displayed. It is fitting, then, that after the Yankees gave back the lead (again!) in the top of the ninth inning, Jorge Posada would come up to bat with one out and one man on and hit only the second game-winning walk-off homer of his career.

After the game, Joe Torre, Yankees manager, said, "It was such a team effort all the way around. I can't be more proud of the way this ballclub responded tonight. They fought hard, which is what they've done all year."

I get this. Life offers up curveballs. There are strikeouts. And sometimes, every once in a while, a violent collision at the plate. Occasionally these events end the game; but most often, they happen right in the midst of the battle, with much of the game still to be played. In every instance, however, players have a choice to respond well to these setbacks or badly. To allow them to diminish the team's spirit or to renew it. This is what I see happening around me. My recent trials, compared to the simple comfort of my life up to this point, have been jarring, brain-rattling, priority-shifting. No question. What I have yet to face seems scary. How well I am to recover is a huge unknown.

But I am inspired by the ways in which my teammates have encouraged me to seek understanding, to look for opportunities for growth, and the ways in which those around me have rallied as well. This is quite a team, and the attitudes that we have adopted, individually and collectively, to face this difficult time with confidence and hope seem sure to promise victory. After the Yankees game, team captain Derek Jeter said, "To be honest, I always thought we had a chance.'' Yeah. Me too. And I'm quite sure it will make all the difference.

In Sickness and In Health

I have been thinking a lot recently about promises. Mostly I dwell on God's promises to me, that he can bring good from every circumstance, that he won't allow me to suffer more than he has equipped me to handle, and most importantly, that he will never leave me, not in my scariest or most desperate moment. Maybe especially not then.

But it's impossible not to notice another set of promises that are making themselves more real to me through this experience than I could ever have imagined. These are my wedding vows, more specifically Steve's vows to me. It's hard to know when standing at the altar exactly what it means, what it might one day cost to recite "in sickness and in health" and mean it. How easy it was to say those words; how difficult to live them.

Here are just a few of the many ways Steve has been a man of his word, a man who keeps promises, over the last few months:

• When I first told him about my tumor, after asking a lot of questions and letting some of the answers sink in, his first remark was, "motherf#%ker." Others had tried to be kind and reassuring, suggesting that this was a solvable problem. I wasn't buying it. Only Steve, with this one word, mirrored my thoughts of, "wow, this is really scary and I have no idea how to handle this." Not since that first day has anyone else expressed quite as well the depth of fear and panic and lack of control I was feeling at the time, and still feel quite often. Steve is the most real person I know, and his honesty continues to be a comfort to me because I know we are partners on this journey and that he will always tell me the truth, even when he can't offer an answer or solution.
• When I was in the hospital and Steve couldn't be with me, he spent most of his away from me time on the phone, talking to me, saying all the things I needed most to hear, which was often simply his voice. More often, however, he sat by my side, taking all my phone calls, talking to the nurses and doctors, relaying messages to friends, family, coworkers, bosses, department chairs, students, yearbook reps. Holding my hand, rubbing my back, cleaning up my vomit. It was never pretty, and he never wavered.
• He left my hospital room at night to drive the thirty miles back home so that he could see my kids safely into bed, the dog walked, the coffee made, the laundry done, the house locked up. He continued to drive my daughter to school every day, keep in touch with his own kids, be a good son to his father, all the while caring for me. I know his face time with his own children was skinny during this week, but he never complained. I knew every minute of that week that I was his first priority.
• I wish you could have seen with what heart he undertook his responsibilities for my care once I came home. Three times a day--early morning, mid day, and late at night--Steve would carefully lay out all the tools needed for an infusion of my antibiotics. And three hours later, he would come in and undo it all, with the same care for my wellbeing and comfort. Meanwhile, he was also back to work, at what probably seemed during those two weeks like his second full-time job.
• Steve has been to every doctor's appointment, every lab visit, every scary surgeon's meeting. He listens carefully, asks wise questions, and afterwards discusses with me all of his impressions. I sit through most of these appointments in a panicky haze, so thank goodness for his attention. Only because of his involvement have I been able to make a single decision with any assurance at all. I trust his opinions completely because all I have seen for weeks and weeks is his dedication to my health and wellbeing.

It's one thing to say to someone, "I love you." We hear this in our society a lot. But love isn't a sound you can hear. It's an act you can see. So thank you, hunny, for loving me with a love I can see.

Hamsters and Potters

It's strange how sometimes I feel like an entirely different person these days than the one I was before receiving my diagnosis. Heck, I feel different today than I did yesterday, and than I did the day before. It's hard to explain, but I keep seeing my mind as a plate. I used to fill up my plate with everything that would fit on it--work, graduate school, being a mother and a wife and a daughter and a sister and a friend. Not one hour of my time was unaccounted for. Now I still see the plate, but there only seems to be room on it for one kind of food, even though it is just as full as it was before. All the rest seems to have dropped away. It's an irony. Now that I have the time for many different kinds of activities, I don't have the energy or the inclination to do a single thing. It's a stasis, a waiting that seems to fill up every minute of every day. I feel like I'm in a place of restless dread, ready for the surgery that will heal me but scared to death at the same time. Can it hurry up and get here already? Can it all just go away?

This is perhaps the mystery of suffering. We must suffer--all of creation does--but what for? Only humans seek meaning in their anguish, and I am no exception. This is happening for a reason. I know I am here to learn and to grow, but couldn't I just take a class or read it in a book? I've been feeling angry this week. Yelling, glass breaking, lots of tears. I was busy, involved in a hundred different projects. This really wasn't a good time for me to have my plans interrupted. Could I please get back to my life?

And then I understand--this is my life. After forty years of relative ease, a little suffering. Just like everyone else. So as I see it, I have two choices. I can burrow, hide, allow my fear and sorrow to overwhelm every minute of every day. Or I can accept that this, too, is a part of who I am, and who I am becoming. I will be changed, to be sure, but perhaps a good changed. More and better than I was before.

Dave Stoecklein, our amazing pastor, explains it this way: there are two views of suffering. One is something he calls "hamster-wheel suffering." We turn and turn and turn but accomplish nothing. Our suffering is futile. We do all the work that suffering brings with it, but in the end, we learn nothing and don't grow at all. The second kind of suffering he describes as "pottery-wheel suffering." We turn and turn and turn, as before, but in this turning, something is accomplished. An object of beauty is created. Art.

This is what I choose for myself. God has promised that my suffering will develop my character. He did not choose this illness for me, this fear for my family, the helplessness and anger and bitter tears, but he has the ability to use what he hates to make what he loves--people of deep faith. Those who love more, judge less, see others with compassion and grace. This is who I want to be. And so I will continue to trust that I am not alone, that although I am afraid, even though the pathway seems dark and overgrown right now, God is with me, working through every circumstance in my life to mold and make me into the woman he knows I can be. I want to be art.

This is the verse that helps today: "I'm absolutely convinced that nothing--nothing living or dead, angelic or demonic, today or tomorrow, high or low, thinkable or unthinkable--absolutely nothing can get between us and God's love because of the way that Jesus our Master has embraced us" (Romans 8:39, The Message paraphrase).

Power in the Plan, part 2

Other factoids: Based on the tumor's size, Dr. Badie estimates that it has been growing for five to ten years. Because of the relatively smooth margins, he too believes the tumor is benign. He said that he has seen meningiomas that he previously thought were benign turn out to be malignant upon pathology, about 5% of the time. He does not think that will be the case for me. The hospital at City of Hope is only five months old. Dr. Badie told us that the technology available to him for my surgery is the best there is. This is important because the more precisely he can locate the tumor, the smaller all of my incisions will have to be. He thinks that the tumor is located a little more forward on the brain than we originally thought. This matters for two reasons: one, if it grows much larger, it will encroach on my motor cortex, which he said will result first in facial drooping that may not correct itself. Second, when he operates, he will have to incise through the chewing muscle on the right side of my face. This will increase the pain and discomfort I experience postoperatively and might require me to do some exercises to retrain the muscle. The pain is an important factor because how well my pain is being managed will determine when I can leave the hospital.

Another benefit of choosing City of Hope is that each hospital room is private. If you have been reading this blog, you know that my experience with a roommate during my hospitalization last month was very upsetting to me. I don't generally act like a brat, but there's nothing like a little privacy, and this might be a time when I need it the most. I cannot express how much we liked this doctor--at least as much as Dr. Anker. That he is a Blue Cross preferred provider is a huge selling point, but we would never have chosen a hospital or a surgeon because of monetary considerations alone. It's funny, but one of the things he said that we liked the most was that he thought my surgery would be "fun." Can you believe it? He certainly didn't mean fun for me, but he has great confidence that he can perform this operation without too much concern for its difficulty or my postoperative health. His confidence increases ours.

On a lighter note, I asked Dr. Badie what my tumor looks like (greyish-pink) and if I could see it afterwards. He said no, that it would be on its way to pathology by the time I came out of anesthesia, but then he said, "I can take a picture of it for you." I love this guy! I appreciate so much that he knows how important it is to me that I have a certain level of understanding about the details of what is going on inside of me. (See previous entry for my comments on being a "watcher.") Then he said, "I can even videotape it for you if you want me to!" I told my mom this, and she said, "and you said no thank you, of course!" No, mom! I said, "oooh, yes please!" It might take me five years to be ready to watch it (probably not), but I know at some point I will want to know exactly what happened on that day. Steve thinks he will watch it that night!

Speaking of Steve, he is the single best person to have at these kinds of appointments. No one asks better questions. Every doctor we've seen has said to him, "that's a really good question." How lucky I am to have such a wise and insightful partner on this journey. His feeling about the videotaping was this: only a doctor supremely confident in his ability to be successful would videotape his work AND offer it to the patient. I think he's right. He asked Dr. Badie about his experience with this kind of tumor, and after much explanation about his career path, his short answer was, "I've dedicated my entire career to this kind of work." Good answer!

Our preliminary decision, then, is to have Dr. Badie perform this surgery at City of Hope, and as his surgery days are Tuesdays, we (Dr. Badie, Steve and I) have targeted June 13 as the most logical date, for a host of reasons. After a few sick weeks, and a few more restless, anxious ones, I am glad, once again, to have a plan. It's amazing how much comfort and reassurance there is in the ability to think about the steps, the process of a scary experience. And then to know that not only we have a plan, but that this plan is just part of the greater one that God has in mind for me is heartening indeed. I can do this--he has promised!

So although I suppose this date could change, please mark your calendars, at least for now. Your prayers have been so meaningful to us, and we know that we will need them more than ever as the date approaches. Although we feel supremely confident in this doctor and his abilities, and we know that the God of the universe is in control of all circumstances, I do believe I will have periods of fear and doubt as the day draws near, so please keep praying!

Power in the Plan, part 1

It's amazing how life treats us. The last few days have been the lowest yet. On Monday, Steve and I saw our primary care doctor so that he could help us to coordinate my care, which has already been dispersed among four different specialists, with more likely to come. Although he was helpful and reassuring, when I shared with him that I felt like I was slow in recovering from being sick--dizziness, unsettling memory lapses, and utter exhaustion by two or three o'clock in the afternoon--he told me that I was being optimistic if I thought I would just bounce back, as some symptoms will persist for at least six months and maybe as long as a year. Meningitis is a multi-system infection, he explained, that really takes a toll on the body. How depressing. It's pretty difficult to be upbeat and positive when I can hardly get out of bed in the morning and shower before feeling like I need a nap! This is so not me--I am a do-er. And to not be able to do as well or as quickly or as much as before has been a little rough on my spirits.

In addition, Steve asked the doctor some tough questions about my impending surgery. I say tough not because they were hard to ask, or hard to answer, but because, for me, they were hard to think about, the answers difficult to hear. However, it's time for me to start thinking about exactly what will be happening to me under the knife, the saw, this blade and that one. Some people might be able to go through something like this knowing little, trusting completely in the care of their doctors. But not me. I'm a watcher. I watch every needle stick, every drawing of blood, I like to sit over the wing on an airplane so that I can pretend I understand how it works--because if those flaps are moving, the plane must be working, and surely we will land safely. This is me, falsely reassured even though in reality I comprehend as little as the person next to me who doesn't even look out the window.

Still, it's upsetting to think about the details. Yuck. So I was apprehensive, to say the least, when we met yesterday with Dr. Badie at the City of Hope. It's overwhelming to be in such a place. We sat with, walked past many people who will not live, whose diseases will end their lives, and soon. What does being there mean for me? Am I like them? Is my life endangered as theirs are? Powerful questions. However, from the very beginning, we were comforted by our visit. The hospital runs like a well-designed watch--from the moment we arrived, we were escorted and advised. Sit here, wait here, talk to this woman here, fill out this form, and finally we saw the doctor.

Dr. Badie, whose name is pronounced "bad-eee," accent on the second syllable, is roughly our age, thin, handsome, and very kind. He spent his entire academic life--bachelor's, MD, internship and residency--at UCLA. Not too slouchy. He then began his career at the University of Wisconsin, where he participated in groundbreaking work in tumor research. He was there for ten years. He returned home to Southern California, however, when the City of Hope came calling. His reasons for returning? He has the opportunity here to bring recognition to the work COH is doing in tumor eradication, including some crazy genetic engineering work he is involved with. He is the director of neurosurgery and the head of the brain tumor program. Again, not bad. In addition, he also returned to Southern California because he missed seeing his kids play outside (apparently, In Wisconsin, kids play in the basement six months of the year!), and his family is here--brothers and sisters. For some reason, hearing him talk about his family was reassuring to both Steve and me.

On to the good stuff: yes, the tumor must be removed. Yes, we can wait until summer but not longer. Yes, it is in a great location for uncomplicated access and removal. Some of the topics on which he disagreed with the first surgeon--he thinks the surgery will take about two hours (compared to 4-6), he thinks I can be out of the hospital in three days (compared to 4-5), and he thinks I will be on anti-seizure medicine afterwards for only about 2-3 weeks (instead of three months). In addition, he doesn't see the need for steroids, as he thinks there will be little or no swelling of the brain after surgery. He did say that there would be bleeding, as tumors attach themselves to blood vessels in order to survive and grow, but he thinks he will be able to manage this easily. He does not see major vessel involvement, at least on a preliminary review of the MRI. All good. However, he doesn't think I will drive again until after I finish the medication, a much more conservative estimate than Dr. Anker gave us, and he believes I will need at least four weeks before I am ready to get busy with any kind of real activity besides a little computer time (and Yankees baseball watching?). Although this, too, is a more conservative number, it makes sense to me, given the difficulty I am having getting back on my feet since being ill. And this surgery will be a whole different ballgame.

Sorry--got to get a move on this morning. Part 2 soon, I promise!