Archive for September, 2011

posted by Amy on Sep 28

I was happy to get off chemo, but it’s also scary. When you go in once a week and get hooked up to a machine that pumps stuff into you for several hours, it feels like you’re really doing something. For me the harmful effects from the chemo seemed like a small price to pay for having a heavy hammer to use on the cancer. Then August 29 rolled around. The scan showed that there are no new lesions and the old lesions have shrunk significantly. I didn’t quite know how to feel about that. On the one hand I was terrified that there would be progression, so “no new lesions” was a huge relief. On the other hand, I was secretly hoping for a miracle, so, even though I knew that was unrealistic I was a bit let down to learn that the old lesions are still there. Being caught exactly in the middle of those two extremes was unexpectedly difficult.

I began sleeping a lot more than usual, and when I woke up each morning my first thought was that I wanted to go back to sleep, which is really out of character. I’m usually annoyingly cheerful and energetic in the morning.  It was hard to get my work done. It was hard to return phone calls or emails. It was hard to have coherent thoughts about what I was feeling. Then I learned that David Servan-Schreiber, the author of Anticancer; A New Way of Life, had died. He had brain cancer for 19 years, and it finally killed him. For me, for awhile, the bad news that he was gone swamped the good news of how he was able to live, love, and work, and the contributions he made to the health and well being of so many other people. I slowly came to realize that I was depressed.

I snapped out of it within a couple of weeks, at least for now. I learned that the hospital where I’m being treated has a psychiatrist who specializes in working with people who have cancer. That’s good to know. There are also ample “behavioral health” resources at the BU Student Health Service. I am not averse to getting help if I need it.

In the first week of school I read Bird by Bird; Some Instructions on Writing and Life, by Anne Lamott. I bought the book almost three years ago when I started teaching writing. It does have some terrific writing advice, but, as the subtitle says, it’s also about life. I heartily recommend it to anyone who sees even the most remote connection between writing and life.

In the book, Lamott mentions her friend Pammy several times. Pammy got breast cancer, and died from it, leaving behind a young daughter, Lamott, and Lamott’s young son. At one point during Pammy’s illness Lamott called a doctor looking for a way to get Pammy cured. The doctor couldn’t give her that, but he told Anne to watch Pammy carefully for the next six months, because in her dying Pammy would teach Anne how to live.

I’m not in my last six months, but I am on borrowed time. It’s possible I’ll live another four or five decades, but probably not. But not knowing how much time we have is true for all of us. All of us. As one wag put it, “life is a sexually transmitted disease that is invariably fatal.”

Cancer has brought me more clarity and a higher level of certainty about my own death than most people have. In a way, that’s good. It’s one less thing to worry about. I’m being closely monitored, so I know that, in general, my body is functioning very well: strong heart, near-perfect blood pressure, strong immune system, etc., etc. So I probably won’t have a heart attack or stroke. And it’s unlikely I’ll live long enough to develop dementia. There are worse fates than this.

I have lost my illusions of self sufficiency, self reliance and invulnerability. Those are all things I thought I needed, things I clung to tenaciously, but it turns out I didn’t need them at all. Not only are they unnecessary, they are huge obstacles to living fully.  I now realize how much I need interdependence and loving relationships, and how hard it is to have those things without being willing to be vulnerable. I need other people; their prayers, their love, their companionship, their stories. It is what we are made for–to love God and love one another. Anything that gets in the way of that is a waste of time, and I don’t have any time to waste.

My choir director in Denver used to say, “The present moment isn’t much; it’s just all we have.” Today, now, in this moment, I am grateful for my life and all my blessings, and I am experiencing the ineffable joy of being. Joy is something broader, wider, deeper, fuller and more real than happiness or contentment. It is possible to experience joy in the midst of fear, sadness, and grief. I can be depressed but yet feel joyful. That’s just amazing.

I don’t know what my future will hold, and I have to figure out how to work around that. But I never did really know what my future held and I was working around it anyway, just not as mindfully. Now that I am learning to give death its due I am more free to live fully. Instead of seeing my life as a series of goals to be set and attained I now see it as a mosaic of stories, experiences, and vignettes. I am paying more attention–to those stories and experiences, and to the people who are part of them. I am awake and aware much more often than I used to be. If I only get a few more years I want to live as fully as possible. But if I do get five more decades I also want to live as fully as possible. Nobody has any time to waste. This is not a dress rehearsal. This is it–one life per customer.

You can’t talk or think or write about life with any kind of depth or coherence unless you keep death in the picture too. Illness, disability and death are not abnormal. They are part of the deal. If the unexamined life is not worth living, then neither is the unexamined death. “What do I want people to say about me after I die?” is a question everyone should ask. It is certain that we each have a finite number of days on this earth, and for most of us that number is unknown. Most of us would not want to know, but there’s a lot to be said for thinking and planning in more than one time horizon. Every day, maybe we should do one thing we really, really love, just in case we never have another chance to do it. Every year–maybe on New Year’s Eve, we should think about the one thing we want to accomplish just in case it’s our last year to get it done.

 

 

posted by Amy on Sep 8

As of this morning I’ve been to one and one-half classes. Constructive theology meets twice a week in 90 minute blocks, instead of once for three hours, so the second half will be later today. I’m still excited about being back in school. I love studying and discussing theology. I think it’s going to be  a great semester. I am singing with Seminary Singers, which is to a great extent just my way of making sure I get to chapel every Wednesday. The anthem we sang yesterday, that I had never even heard before Tuesday night, was in my head this morning when I woke up, which is another reason I sing. I love having beautiful music in playing in my head. Singing is life.

I’ve been wearing headscarves. I have a little hair left, but it looks terrible. It doesn’t cover my scalp enough to protect it from the sun, and it’s ugly.  (It has been raining nonstop for three days straight. I’m not so sure how a wig would look and feel if it got wet, so I’m saving the wigs for later.) Classmates who know I spent the summer getting chemo, and a few strangers, comment on the scarves. Classmates who don’t know are another matter. At choir practice Tuesday night one woman asked me, “Are you okay?” I said yes. Then she said she noticed my new headgear, and I said, “Well, I do have cancer.” She said, “I’m glad I asked. I’ll pray for you.” Yesterday another classmate came over to talk to me. He asked me at least twice, maybe three times, how I am. I kept saying “fine.” His eyes kept going to my head. He kept thinking of things to ask me, glancing at my scarf. But he never asked about that.

I don’t want to tell everyone. I don’t want to talk about it all the time. If you know me well enough to find my blog and read it then you get the whole story. If you don’t, and I haven’t told you, then there’s usually a reason for that. It’s exhausting to keep talking about it, to keep explaining. And at this point there’s not a lot to say. I have cancer but I’m fine. The scarves are bit of a giveaway, but they are not quite like walking around with a sign on my back that says “cancer victim.”

I’m not a victim. I have an illness, but so do millions of other people. Forty percent of Americans will die of cancer. That’s a whole lot of people in the same club. Many people with cancer will be cured, or even if that doesn’t happen they’ll live on for many years, sometimes even living long enough to die from something else. Approximately 150,000 people in the U.S. have Stage IV breast cancer. We are among you, wearing wigs or scarves, or sporting bald heads proudly. Or we have our own hair because we’re in remission right now or the treatment we’re getting doesn’t cause hair loss. I’m not saying it’s no big deal, and I’m not telling you not to pray for friends who have cancer,or actually give them some kind of concrete help. But don’t make us cop to our illness as the condition for that. Work out your “there but for the grace of God” feelings about it by yourself.

I haven’t changed that much. I didn’t get “chemo brain,” thank goodness. Last summer I completed my unfinished school work from spring semester on time and well. My energy level is slightly lower than it used to be. I sleep a little more. I get a little more winded climbing stairs.  If it weren’t for the hair loss you’d never know. But even if I had changed a lot I would still want people to accept me as I am and treat me normally. I suppose that’s true of everyone who’s “different” in some way; in a wheel chair, experiencing homelessness, or whatever. It’s good for me to be on the receiving end of being sorted into a category other than “human being.” I will remember this. It will make me a better pastor.

I got an email from a friend this week telling me about her summer. She gave me a book recommendation, and some observations from her trips. I enjoyed reading her letter, and I told her so. She replied that after she sent it she was afraid it had been too self-centered. Not at all.

The thing I need most is community. I need to feel connected to life and to others. Don’t get me wrong. I am happy to receive hugs and prayers and expressions of concern from people with whom I have a real connection. Don’t forget I have cancer, but don’t make it the basis for our whole relationship. Life goes on, and I’m still very much a part of it. I love life, and I haven’t stopped loving it just because it threw me a curve ball. This experience is important, but it’s not the only important thing. There are so many more interesting things to talk about.

 

posted by Amy on Sep 4

My CT scan showed very good news. I have no new lesions, and most of the old ones are significantly smaller. My oncologist says that’s a “great” response. She also said that some of the remaining cancer tissue showing on the scan might be dead cancer cells that my body hasn’t had time to clear away yet. Things are definitely going in a good direction. I will continue to get Herceptin, but a triple dose every three weeks, and I’ll start taking an oral estrogen-blocker. Herceptin helps my own immune system deal with the cancer. A link to an explanation of how it works, including a snazzy little video, can be found here. In a few people Herceptin has produced permanent remission. One of the first people to get Herceptin, Barbara Bradfield, is still alive, with no evidence of cancer. She was treated in 1993, having been told her cancer was terminal.

I am registered for school this fall. I’ll be taking Narrative Sermon, Constructive Theology, and a doctoral level ethics course. I’m looking forward to an academic semester, studying well-defined subjects. I am especially excited about the sermon class. I took Intro to Preaching in fall 2009, and have wanted since then to learn more.

I recently read The Emperor of All Maladies; A Biography of Cancer. The book covers the human cancer experience; its diagnosis, treatment, and study, from ancient times to the present. It is a page-turner. The author, Siddhartha Mukherjee, was an oncology resident at Massachusetts General Hospital for two years. Note that he calls it a “biography.” Cancer is not an “it,” but a “who.” Cancer is not a foreign invader, it is errant human cells. For that reason, it might be a mistake to think in terms of “battling” it, or to visualize violent assaults on it. Cancer is us, only more so. It is the healing process run amok–cell growth that doesn’t get regulated properly, and cells that are supposed to die when their work is done but don’t. The book also describes the development of political and social responses to cancer. It is a complex, multifaceted, interdisciplinary topic, and Mukherjee does an admirable job of giving just enough technical explanation to be illuminating, but without losing sight of the human face of cancer. He is an excellent story teller, but first he is a doctor whose love for his patients and compassion for their suffering shines through.

Cancer can be seen as a metaphor for what Alcoholics Anonymous calls “self will run rampant.” Another name for this might be “sin.” Cancer doesn’t know, or has forgotten, that the rules for how to live are for our own good. God’s plan for humanity is summed up in the ten commandments, and in the “greatest commandment” as articulated by Jesus. “Love one another as I have loved you.” Love is, to some extent, submission. It is wanting the happiness and well being of someone else more than I want my selfish whims to be fulfilled. It is seeking after the highest good. It is the ability to trust in a Higher Power who knows better than we do what is best for us. But cancer cells take matters into their own hands. They refuse to submit. They proliferate uncontrollably. And they live on and on, quite contrary to the ordinary plan for cellular life. Our bodies were not meant to be indestructible. We were designed to wear out and die eventually. I object to running out of time right now, but I accept the inevitability of my own death in due time. The errant, confused, misguided, “sinful” cancer cells in my body do not accept that. They think they’ve found a way around the rules, but of course they haven’t. If they get their way, they will kill me, and then they will die too.

Since cancer is human, and my cancer is part of me, only confused, mistaken, sinful, if you will, I’m trying to find a way to restrain it, both physically (with chemo, Herceptin, my daily walk, the way I eat, the way I think) and metaphorically, but without compromising my essential self. Although I do not wish to be defined by it, I can’t help but give it its due. I did not plan for this. I didn’t think I was high risk for breast cancer. I also unconsciously absorbed the public narrative that we hear most: that it’s “curable” if “caught early.” That it’s one of the “good” kinds of cancer. That it’s more like a chronic illness nowadays. All of that is in doubt right now but, more importantly, my idea of what it means to have “abundant life” has been challenged. I can no longer safely assume I’ll get four more decades of being on this plane of existence. Whether I want it to or not, cancer is reshaping my existence and the story I tell myself about life.

I listen to an affirmation that says, “I tell the cancer these things: Thank you for making me stop and pay attention. Thank you for reminding me what is truly important. You can go now.” I do not want to slide into the “tyranny of cheerfulness” that makes cancer some ennobling rite of passage that we should be glad about. That will not do. It isn’t a good thing by any stretch of the imagination. It has, admittedly, made me learn some new skills, and made me much more mindful of my blessings. But I would not wish this on my worst enemy (if I had any enemies). It’s not fair. (Life is not fair.) It’s incomprehensible, mysterious, tragic, and heart breaking.

I don’t want to leave my kids. I don’t want to miss being part of their adult lives. I have things to do, work to start and finish, more writing, more thinking, more learning, more teaching to do. More socks to knit. More bread to bake. More people to meet and love. More prayers to pray and hymns to sing.  I need a strong, healthy body for all of that. I used to have that. I want it back. I feel like I was just figuring out how to live life authentically and well. I finally found my true calling. I am learning to be good to myself and love myself. I am learning where my true passions lie. My ego or false self has less and less say in how I live my life. I feel like I’m growing spiritually and intellectually. It would be a damn shame to stop now.

So I won’t stop. Just because some of the “stuff” of which my body is made has gone off in an unhelpful direction doesn’t mean I have to change who I am or what I do. I have to take the cancer as seriously as it should be taken, but no more. I put in the time getting my IV drugs. I keep a mental tally of my exercise and nutrition targets, ticking off when I hit them each day. But that leaves plenty of time for what’s truly important. And I’ve got plenty of room for improvement.

 

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