Archive for June, 2011

posted by Amy on Jun 30

A young man in blue jeans and a baseball cap is playing violin in a subway station. This is a common-enough occurrence: a starving artist trying to make a few bucks. The music is exquisite, but hardly anyone notices. In 45 minutes of playing, he collects $32. They don’t realize they are getting a free recital by one of the world’s most famous violinists, Joshua Bell, playing a priceless Stradivarius. They don’t expect it, so they don’t see.

When we read 1 Samuel 1 we see that the people in Hannah’s life don’t really see her. They think they know all about her. Every year when the family goes to Shiloh to make a sacrifice, Elkanah, the husband, gives Hannah a double share, because he loves her, even though she has no children. And every year, the fertile wife, Peninah, taunts and provokes her. To Elkanah, Hannah is an ingrate. He has children with Peninah, and that’s good enough for him. He just wants to eat his dinner in peace, without having to listen to bickering women. He says to her, “Am I not more to you than ten sons?,” not expecting an answer. To Peninah, she’s a source of irritation and provocation. Even though Peninah is the one who has children, Elkanah loves Hannah. Peninah punishes Hannah for this.

After Peninah’s taunting and Elkanah’s dismissiveness, Hannah gets up from the table and goes to the temple to pray. When Eli confronts her, supposing her to be some kind of drunken bag lady, she sticks up for herself, saying, “Do not regard your servant as a worthless woman.”

She asks God to give her a son, and promises to dedicate him to the Lord’s service. She becomes the mother of Samuel, who was the last of the Judges, and who anointed the first two kings of Israel.

This could be a story about making a deal with God, but I think there’s much more to it than that. It’s about someone who does not allow others’ opinions of her, or her circumstances, to define her or limit her. Hannah takes a step towards God on her own behalf. She doesn’t rely on her husband’s piety, or on the powers of the priest, Eli, to intercede for her. She doesn’t let her present circumstances prevent her from imagining a different future for herself. She offers to serve the Lord in what was essentially the only way a woman of that time could serve—by bearing a son who will be devoted to God. And, apparently, this is just what God was waiting for. Hannah trusts in God’s justice, love and compassion, and in return God uses her to alter the course of history. She knows her own worth in the eyes of God, and asserts her own right to seek God in the temple, and plead her own case.

Do you allow your current circumstances or your role in life to limit you? Do you acquiesce in other people’s perceptions of you? Or are you open to the possibility that the God who made you, and knows your heart’s desire, and knows your true worth, will not only affirm you as God’s precious child, but might actually need you to change history?

The movie “Simon Birch” is about a strange little boy, a dwarf, who is convinced that God has a purpose for his life. In the face of his parents’ indifference, his priest’s impatience, the Sunday school teacher’s arrogance, and a tragic accident that results in the death of someone extremely important to him, Simon keeps telling everyone that he has been called by God. It is his faith, and his insistence that God knows him and has a purpose for him, that opens up new possibilities for the other people in the story. He does not allow his physical disabilities or his circumstances to get in the way of his relationship with God.

Hannah lived in a dark and desperate time. There was no king in Israel, and the great judges were a distant memory. The women had been marginalized and silenced. But Hannah knew her own worth, even if no one else did. She put her relationship with God first, and she was willing to serve God. As so often happens in the Bible, God chose an undistinguished, unlikely person to bring something new to the story of God’s people. In following her heart’s desire, she also set an entire nation on a new course.

Do you know anyone like Hannah? Anyone whose faith becomes a force for transformation? I did. Her name was Kathy Burrows. Born with cerebral palsy, she had been a quadriplegic all her life, but she never let that stop her. She decided she wanted to join our church choir. She gave it all she had—she came to all the rehearsals, she got to know everyone in the choir, she took an interest in everybody’s story. She even went with us to perform in Carnegie Hall.

As if cerebral palsy wasn’t enough misfortune for one person, life dealt Kathy two more severe blows. First she got breast cancer, but with treatment—surgery, hair loss, weight loss, and all that—it went into remission. Then one day when she was tooling around on her motorized wheelchair, she ran into a dumpster and broke her leg. Now you might think a broken leg wouldn’t really be that big a deal to a quadriplegic, but it was. It made it so she couldn’t stay in her assisted living apartment, or go out in her wheelchair, and she had to go to a nursing home. Losing what little mobility she had was a huge blow to her, and she became depressed. While she was in the nursing home my husband left me. It broke my heart. It stopped me in my tracks, and drove me to my knees. But Kathy did something that broke my heart open. She sent me a sympathy card. Kathy, who had never had a husband or children or a career, who had spent her entire life in a wheelchair, felt my pain and offered me comfort. I had never done that for her.

Kathy’s breast cancer came back, and she died at the age of 46. But her life transformed me. In contrast to my own self-centeredness, Kathy was grateful for every breath she took, and she lived a life of faith and love. She challenged my preconceptions about what “the good life” really is, and set me on a path that eventually led me to seminary. Like Hannah, Kathy didn’t allow her life circumstances, or other people’s perceptions of her, to limit her. I’m not the only one whose life was changed by knowing Kathy. At her memorial service, many others shared similar stories.

Before she died, Kathy wrote a song about her choir membership. I don’t remember all of it, but the last few words of the refrain stuck with me. Kathy wrote, “I’m not an outcast in the choir.” I experienced her as a messenger from God about my call. She experienced me, and the other people in the choir, as a loving, inclusive community. You know it’s true love when you both think you’re getting more out of it than you put in. Kathy challenged and changed me. She inspired me to rethink my values and my life, and my effect on other people. She was a living example of loving God and loving neighbor, and she was a signpost on my path to ministry.

God calls each of us into a relationship of love and trust with him. Out of this relationship, God will transform our personal stories, and can use us for God’s purposes. Whenever you are feeling powerless or marginalized, remember Hannah, and take it up directly with God. Put your trust in God, and value your relationship with God above everything else. Offer to serve God, and be willing to do God’s will. And whenever you are feeling sorry for yourself, or thinking that what you do doesn’t matter or make a difference, remember Kathy, and realize that you are part of a much bigger story.

posted by Amy on Jun 22

I got my hair cut Sunday. My hair has started falling out (just thinning, supposedly), so to make cleanup easier, and hopefully to disguise the loss of some unstated percentage of my head hair, it’s now in what the stylist said would be a “long pixie cut,” with “long” meaning, apparently, “I didn’t use clippers and give you a buzz cut.” I told her it had to be completely maintenance free, so I can avoid hair dryers, styling brushes and chemicals, and can preserve as much of it as possible. It was a pretty drastic change, but I like it.

Some of the literature says to be grateful for hair loss, because it means the medicine is working. OK. I’ll try. But of course it would be better if they had something that only kills the cancer. However, as I understand it, Taxol is actually harder on cancer cells than on healthy, normal cells. The cells I want to keep are more able to bounce back from the assault, so it’s not, as people sometimes think, a matter of hoping the cancer dies before I do. It’s a little more subtle than that, but it is a very “broad spectrum” approach.

There is a drug currently in clinical trials that uses Herceptin to target the HER-2 positive receptors, and then delivers a drug to the cancer cells that kills only them. Herceptin merely stops (or slows) growth, though in some patients it prevents recurrence, even after it is discontinued. But this new drug, T-DM1, is very promising.  Here is a description of it from the manufacturer. And for a better description of what “HER-2 positive” means, look here. A normal assay for HER-2 is 1. A higher ratio than that means the cancer is “HER-2 positive” (mine is 3.4). The second link, from the Mayo Clinic, has a bunch of other links on the bottom that might be of interest.

One of the many potential side effects of Taxol is neuropathy. Sunday night my fingers started burning and tingling, as if I had been handling hot peppers. Coincidentally, I did cut up a jalapeno Sunday evening, but long after I got that off (with lemon juice) my fingers were tingling again, and my toes were too. Since I didn’t cut up the pepper with my feet, it was obviously not a capsaicin issue. I told my nurse about this when I went in for chemo Monday afternoon, and my nurse practitioner came to talk to me about it. I was given a choice of skipping the Taxol, and having only Herceptin. I decided to not to change anything this time, and see how things go for one more week. If the neuropathy gets worse I might do just Herceptin next week. Taxol-induced neuropathy usually goes away eventually after treatment is over, but not always. It would be an easier decision if the parameters were more clear. If they could guaranty me a cure, and guaranty that, even if permanent, the nerve damage would not be worse than it is now, I’d be happy to sign up. I guess I did that anyway, without the guaranties.

During chemo I listened to guided imagery. On the tape a man with a soothing voice talks me into a deeply relaxed state, then he says to visualize a time in my life when I felt very alive, connected, and joyful, suggesting such things as looking into my newborn baby’s eyes, or some other special moment. Then I envision my army of white blood cells and I convey to them that sense of vitality and vigor that I conjured up. I envision the medicine as a “magic potion” or a “golden elixir,” and see it going past my healthy cells, which are protected by a white light, and straight to the cancer cells, which drink it eagerly and die. Then I recall a time when my body was strong, healthy, and perfectly functioning, and I “put on” that body in my imagination.

At the very least it’s a pleasant way to daydream away some time while I’m being infused. It certainly can’t do any harm, and it might be helpful to enlist my will and my imagination in this effort. For me, doing the relaxation, affirmations, and guided imagery makes more sense than passively accepting whatever happens. I have to be a subject, not an object.

My physical condition seems to be improving. My diet is high in protein, fiber, probiotics (yogurt), and antioxidants. That, along with being proactive about taking nausea and indigestion meds before they are needed, is keeping me pretty comfortable, with good energy levels. However, last week I slept a lot. This week I find it difficult to fall asleep and stay asleep. I wonder if the steroid effect is somehow cumulative.

I try to get one hour of outdoor exercise every day. There’s a pretty reservoir nearby that I enjoy walking around. It’s different every day–ducks, geese, turtles, joggers, dogs, and an ever-changing array of flowering trees and bushes. The other day I saw a loon. I was going to go for a bike ride today, and I still might do that later, but it’s raining.

I sent a mass email through Facebook to friends whose email addresses I don’t have, letting them know about my illness. I also sent a letter to someone whose email address I have misplaced. I really like what one of my Facebook friends (a former real estate developer, who was one of my favorite clients) said to me:

Hey Amy. Well breast cancer eh? We bring in these things for “contrast” they say, so take it as that and nothing more. After all we wouldn’t want to put our attention onto the things that we don’t want, right? So while you’re going through this, think health, breathe health. You will hold that thought in your mind as much as possible. Rent every comedy that really made you laugh and re-watch them, ten times, and basically you prescribe a comedy to yourself every night like medicine, and laugh constantly. Don’t watch dark, depressing movies or music (not that you would).

And last thing I can add is what I call “systemic rest”. A woman came to speak at my high school once, she had been diagnosed with metastasized, go-home-and-say-goodbye cancer. It was everywhere, brain, lung, you name it. She called a macrobiotic diet expert who was a friend and she started on a brown rice only diet, twice a day. Yes there are somethings worse than death . But she was 10 years in remission talking to us, and the doctors just shake their head, as they do, and say well…

It’s a thought. I never forgot her and I thought if I ever got something that looked serious, I would do the same thing.

In the meantime, you’re in my thoughts, in a positive way. I will remember your laughter, your genuine good humor, your sparkling eyes. Don’t take what the doctors say too seriously. They are not all bad, but the bad apples ruin it for the rest of the 5%.

I thanked him, and told him my onc is pretty cool, and I’ll hold off on the “systemic rest” for now. My healthy cells (including white and red blood cells and platelets) need protein (and some fat) to recover. Otherwise, I’ll gladly take his advice. And hearing this from him reminded me of the very best thing about my solo law practice. I had clients who were more than just clients. They were friends and allies.

I’ll close with something a friend wrote in a card I received yesterday: “Please know you are in my heart and on my mind & I see you as whole, perfect & complete! Prayer for you–God sees your cells are well, your vital organs are well, and your heart beats to the rhythm of God’s love!”

I will hold that thought.

 

 

posted by Amy on Jun 17

My third chemo was Monday, June 13. My daughter Lily went with me. She came up from DC on the Greyhound bus Sunday night, and stayed with me until this morning. For my three hours in the oncology suite she brought along a book to read aloud to me. That was a nice way to pass the time. The previous Friday I had found out that the Boston Public Library was going to do a free showing of “Jezebel” at 6 pm Monday. I called to see if I could get in earlier for the chemo, so we could go see the movie. Patty had an opening at 8 am, so we started the day with the treatment, which actually worked out fairly well. My standing appointment is at 3. I picked that so I could go away on weekends and not have to hurry back.

Even though I intended to use the blog as a single “hub” for updates, some people have been emailing me, and I love that. It’s nice to know you’re thinking about me and wondering how I’m doing. Feel free to call or email, or even write. Or send flowers.

A classmate sent me this article about how if you’re not bald and emaciated people don’t know you have cancer. I Googled the author. She has had Stage IV breast cancer for eight years, and has thrown herself into a Herculean and successful effort to raise significant funds for research. She has also, rightly I think, recognized the male care givers whose lives are also shaped and changed by women’s cancers. She says she thinks people would give her more support, sympathy and help if she looked more like a cancer patient. She even threatens to shave her head.

I found another great blog post here. The blog is “The Daily Breast,” and its tagline is “not your mama’s breast cancer blog.” This author coins the very cool term “cancerasure” for the phenomenon of trying to get past everything, cover it up, act like nothing’s wrong, act like nothing happened. “No one will know” is presented as a desirable outcome.

Finally, there’s this touching blog post called “Things I don’t have to worry about anymore” from “Mr. Wonderful,” which is what the charming and irrepressible “Carcinista” called her husband. She died of ovarian cancer on May 3. I didn’t find her blog until after that.

I’m new at this, and I may very well see things differently later, but I have some preliminary responses to the first two posts. (The third one stands alone, and speaks for itself.) First of all, I think if anyone needs more help or sympathy or more time to rest, for any reason, she or he should ask for it. The author freely admits to being a hard-charging Type A Energizer Bunny. To borrow a concept from a set of affirmations I’ve been listening to, maybe her body is teaching her something useful. Maybe this would be a good time to let go of worry, to quit being so achievement-oriented, to learn to lean on friends and loved ones, and to be gentle and compassionate with herself and others. That’s one of the lessons I think I’m seeing for myself. I admit that I am too self-reliant and too apt to try to tough things out on my own rather than ask for help. At least I quit thinking it was a virtue, and began to realize that I absolutely need two-way, reciprocal relationships. Now that I have cancer, I am powerfully motivated to change my solitary ways, and they can’t even be reciprocal anymore. I have to learn to let people help me and take care of me, whether or not I can “pay them back.” My refusal to do that would seem like a rejection of them.

I am perversely glad I was diagnosed at Stage IV. My feeling is it would have happened sooner or later anyway. The kind of cancer I have is very aggressive, and it likes to go sprinting past the original tumor site into liver, bones, brain, heart, etc. When they tell you that you have breast cancer the first (stupid) reaction is to wonder if you’ll lose your breast. I got past that pretty quickly, and I was weighing the lumpectomy/mastectomy pros and cons, and reading up on reconstruction techniques. Then I found out it’s metastatic, and the top priority became trying to drive my cancer into remission. So all the surgery issues are being deferred, perhaps indefinitely. I haven’t lost weight or lost any hair, at least not yet, so nobody is going to know about it just by looking at me.

But I want people to know. In our culture we work so hard to avoid death and mortality. I think that may be a large factor in our acquisitiveness, greed, and profligacy. When we say “the one who dies with the most toys wins,” we might actually be thinking all the stuff will protect us from dying at all. If you know someone with incurable cancer, maybe you’ll look at your own choices, habits, practices and priorities. God knows I am doing that.

Following are some excerpts from emails I sent recently:

To a long-time friend who is a breast cancer survivor, and who has been keeping track of how many weeks I’ve been in treatment:

Yes, three down, ten to go. (I’m not counting the Herceptin every three weeks for a year, because that will be so much easier by comparison.) So far it’s not too bad. I think I’m a little anemic. I notice some other changes, but so far it’s all tolerable. My hair hasn’t started falling out yet. I haven’t gotten it cut either. I had planned to let it grow out before this all came up. Then I was going to cut it, but I’m not ready yet.

I’m trying to find that balance between living a “normal” life, doing all I can to get well, and realizing that I never did have all the time in the world anyway, and that this situation just makes it more clear and obvious than it was before. Mostly I try to stay in the now. It’s the least scary, most satisfactory place to be. Moment by moment, I’m really focusing on the beauty and wonder of the world. I know that sounds cheesy, but it’s authentic.

Thank you for all the hints and advice. I love the guided imagery. I’m also doing a lot of reading about breast cancer politics and all the downside of the pink ribbon mentality. I appreciate you raising those issues too.

To some family members, after I watched “Living Proof:”

Those of you with an interest in biotech might like to get “Living Proof” from Netflix and watch it. It’s about the researcher at UCLA who created Herceptin, the monoclonal antibody-based treatment that I’ve been getting. Before Herceptin, people with HER-2 positive breast cancer were told it was aggressive and very difficult to treat successfully. Now more targeted therapies are being developed for it, and things are looking up.

Harry Connick Jr. plays the doctor. He’s not a great actor, but he is pretty easy on the eyes.

There are lots of scenes of Harry running. Not bad.

Finally, to a someone I went out with a few times, who resurfaced recently and who wanted to know how to help, I said this:

The best thing you can do for me is be my friend. I don’t want all the focus to be on me. It’s good to know I’m in your thoughts and prayers. It’s fun just to have conversations.

No matter how this turns out, the best thing for me to do is stay in tune with God and live in gratitude. So far I don’t find that difficult. I have been blessed, and I am not afraid. I am in no hurry to check out, but I try not to worry about things over which I have no control. I know that ultimately I am in God’s hands and I am perfectly safe.

That’s all for now. Keep those prayers and positive vibes coming. Even if it doesn’t do anything direct or tangible for me, it’s still a good idea.

posted by Amy on Jun 16

One cold winter night in 1975 while I was walking home from the bus stop after an evening class a man who was walking toward me suddenly punched me in the abdomen hard enough to knock me down onto my back. It almost knocked the wind out of me, and of course it terrified me. I started screaming and kicking, and he ran away. I went to a pay phone and called my husband. Then, not thinking it would do any good, I called the police. In a few minutes both Steve and a police officer showed up. The police had a suspect in custody. My description was pretty accurate, though I had thought he was larger. Fear will do that to you. Some officers on the beat had heard my screams, spotted the man running, and kept him in sight until the dispatcher announced the crime.

Until that happened, I never knew how I would react in such a situation. I had no time to think or plan, so the response was purely visceral. I fought back. I was also very angry. Had I been given the opportunity, I would gladly have ordered the man tortured or castrated. That was a momentary reaction, but a very strong one, and I was surprised by that.

The next day I went to the doctor to make sure I had not sustained any internal injuries. In those days my husband, brother Ross and I belonged to the Denver School of Judo, and I was in excellent physical condition, with very strong abs. The doctor said that had protected my innards from the blows. Then I went to the police station to file a complaint. On the bus on the way home, an African American man sat down next to me. My assailant was African American, and for a moment I felt the same fear I had felt the night before.

The man who attacked me was charged with second degree assault. He must have entered into a plea bargain, because there was no trial. I later learned that there had been someone in the neighborhood attacking women for some time before it happened to me. (Had we known that, Steve would have met me at the bus stop every night, which is what he did from then on.)

I didn’t keep being afraid of African American men on the street, but from then on I have been more vigilant when walking alone. I didn’t stay mad at the man. I never saw him again and never did come up with a theory for why he did it.

I was happy that I screamed and fought back. I wasn’t really any good at judo–I mostly did it for exercise and for something to do with Ross and Steve–but at least I was used to falling, and participating in a contact sport probably helped me keep my wits about me. Years later a counselor told me I didn’t have any boundaries and wasn’t any good at defending myself. That was true of verbal assaults and emotional abuse, but at least I did have a natural, healthy reaction to an overt physical threat. Good to know.

Just as I never knew how I’d respond to being mugged until it happened, I never knew how I’d react to learning I have a life-threatening illness until it happened. It has a lot in common with being mugged, actually. It’s a huge interruption. It suggests the necessity for some changes in my daily routine. It’s not something I ever thought I’d have to deal with. And it’s showing me things about myself that I did not know before.

Just as practicing judo became an unexpected resource in a different context, since my diagnosis I have been drawing upon practices that I learned in other contexts. Probably the most important skill was developed in parenting an especially challenging child.  After much trial and error, and with the help of a strong, wise therapist, I learned to let go of all investment in outcomes, but, instead, to just “keep on keepin’ on.” It was the only way to get through each day, week, month, and year, the only way to stay grounded and (relatively) sane.

Coincidentally, that is also the best way to help another person tap her or his own inner resources and develop healthier coping skills. No one, not even a very strong-willed, motivated parent, has the ability to force another person, not even a child, to do the “right thing” and choose the right way to live. Trying to do that makes it appear that life about power struggles with others, instead of mastery of self.  But if the child sees the parent modeling making wise choices and taking good care of herself, the child might just decide to imitate that behavior. Even if that doesn’t happen, at least Mom will survive. They might both thrive.

By letting go of my investment in the outcome, I created a space of possibilities for both the child and myself. I focused on what was truly possible to do at any given moment, and honed the ability to discern what I needed to learn. That shift in focus gave me back my life. New insights and new blessings began appearing all the time. Whether or not the kid figured it out, I had a worthwhile project of my own–getting to know myself, working on my relationship with God, and exploring the paths that had been illuminated for me. I relaxed, let go of my anxious focus on childish behavior, got happier, and was better able to appreciate the many good qualities of the child with whom I had been struggling.

So now I have this disease. I have no power to make it go away. Technically, neither does my oncologist. The treatments I’m getting might result in “permanent remission and a normal life span,” but it is by no means certain that they will. It’s not like getting an infection, taking antibiotics, healing, and going on about your business. Cancer is mysterious, erratic, and persistent.

Just as the best way to parent is to try to make sure I’m not the one who’s not being fun to be with, whether or not the kid ever figures it out, the best way for me to live with cancer is to be as mindful, grateful and alert as I can every moment that I can. I can set my own agenda. I don’t have to let cancer do it. I could be letting it color every decision, every response, every experience, but I don’t have to do that. I can concentrate on what it is possible for me to do, and just do that. I can think about what’s being taught, concentrate on learning the lessons that are set before me right now, and leave everything else in God’s hands. That is not wishing it away, it’s choosing to make the most of what I’ve got. It’s not that I don’t care about the outcome. It’s both that I realize I can’t will it to turn out the way I wish and that no matter how it turns out, I would be a fool to put my life on hold while awaiting that outcome. Whether I ultimately get one more day or several more decades, I have to live my life one day at a time.

Positive thinking doesn’t cure cancer. Some crabby, pessimistic people beat it, and plenty of cheerful, optimistic people succumb to it. The current “cancer culture” involves an expectation that people with cancer will be good at it–they’ll be noble, unselfish, hopeful, faithful, etc., etc. Maybe that’s how we all whistle in the graveyard. We don’t think we’ll ever get cancer, but if we do then we still have power over it. Sorry, no. We don’t.

The present moment is all I have. Right now I’m alive. I can breathe. My mind is clear. My heart is beating. The sun came up. I am grateful for this day. If this were my last day, I’d want it to be full of joy and gratitude and laughter. I want every day to be like that, no matter how many I get.

posted by Amy on Jun 10

I had my second chemo Monday, June 6. The session began with my oncology nurse and the nurse practitioner insisting I tell them all about how things had been for me since the first session. I didn’t really want to talk about it, and their pressure to “come clean” felt more like we were having a Communist Chinese Self-Criticism Session than a friendly dialog. For one thing, Lauren, the nurse practitioner, had already called me a few days before and gone through the whole thing with me. But the main issue was the power dynamic. Clearly, I was not going to get that day’s medicine until I did what they wanted me to do.

The result was fine, and helpful. I just resented being treated like a balky child. I learned that they give me a steroid to blunt the effects of the Taxol. It’s good for that, but it can disturb my sleep. I also learned that Ativan is not as scary as the warning labels make it out to be. It isn’t a sleeping pill, so it doesn’t cause grogginess, but it can help me get to sleep, and for some unknown reason it also helps with GI distress.

I joined an online Her-2 support group. It has a category for nutrition questions, moderated by a dietician. The materials my care team gave me all said “eat more protein.” How much more? How do they know how much I eat now? I know I need plenty of protein to help rebuild non-cancerous cells that are damaged by the Taxol, but what, exactly does that mean? I posted a question on the site saying I wanted to know specifically how many grams of protein per kg of body weight I should be getting every day. One person said AARP says women should get 46 gm per day. That seems kind of low. Maybe it’s right for a 100 pound woman who’s not getting chemo, but neither of those apply to me. Another person posted a link to a site that repeated the “eat more protein” advice with no quantitative data. Another woman told me meat loaf and beans are good protein sources. One said she had met with a naturopath, who advised her to eat one additional egg a day (6 gm of protein.) Nobody answered the question.

I Googled it and found two separate documents that appear to be from reliable sources saying chemo patients should get 1.5 gm per kg of “ideal body weight,” which is about twice the amount recommended for people not getting chemo. I decided that for the time being I will consider my current weight to be “ideal,” since I may need some reserves for the fight. I was hoping the dietician who moderates the Her-2 group would chime in, but she didn’t. I posted a link to one of the articles I found. That was the last entry in that thread.

I went to my first Stage IV breast cancer support group meeting Monday, a couple of hours before I had the chemo. I liked all the people, and they were warm and friendly, but it was also terrifying and overwhelming. I learned that people can be on the brink of death, and be pulled back. I met someone who found her own enlarged lymph node, resulting in being Stage IV at diagnosis, one month after a clear mammogram. I met someone who started out with inflammatory breast cancer, which is rare and very aggressive. It metastasized early on. She has been “stable,” with cancer, being treated continually, for 11 years.

How am I doing? Fine, considering. Frankly, I’m hoping like hell to be one of the 2 to 3% who become “oligometastatic,” meaning it goes away and doesn’t come back. There’s no way of knowing how to get there. In fact, you don’t even know you’re one of them until 10, 15, 20 years go by without a recurrence.

Here’s something I told a friend via email after my first chemo session:

My nurse, Patty, and I were talking about the emotional/mental component of cancer. She said she doesn’t believe we give ourselves cancer, but she does think that anything you can do to “make yourself feel better” is worthwhile. She gave me a little speech about taking care of myself and putting myself first. I told her not to worry about that. There is nothing more important to me than learning every lesson that this cancer has to teach me, and making sure I come out stronger, healthier, saner, and more loving-towards myself and others-than ever before. I know that women in our culture tend not to do that. They put themselves last, after an endless, impossible list of harsh expectations by their bosses, their children, their husbands, their so-called friends and themselves. I was like that. I have come a long way.

It is inconceivable to me that such attitudes and thoughts would not damage the body. I have been listening to affirmations that say, in effect, that when I forgive myself and others for past mistakes, when I take care of myself, accept myself, express myself, stick up for myself and love myself, I give my body a powerful message to heal. The reverse of that is also true: judgment, blame, rage, shame, condemnation, harsh expectations, and easily-withdrawn attention and affection all give my body a powerful message to cease to exist. I have deep, old tapes in my head that do just that. I have ancient traumas lodged in my body that can kill me if I let them. Prayer, meditation, yoga, guided imagery and affirmations will rewire my brain and protect my body.

I told Patty, my nurse, about my liver lesion shrinking between the CT scan on April 29 and the liver biopsy on May 17. It went from 1.2 cm to 5 mm. The tumor in my breast may have shrunk as well. It certainly hasn’t grown. My oncologist remarked that the breast looks the same as it did when she first saw it on April 19.

Think about what probably happens to most people who get a cancer diagnosis. They freak out. “Fight or Flight” hormones flood their systems. Their cortisol levels skyrocket. They can’t sleep. They can’t eat, or they eat too many carbs. Their immune systems are suppressed. I had a little of that, but I recognized that as counterproductive, and I took steps toward serenity, acceptance and wellness. I have taken this as an opportunity to increase my conscious contact with God and to live as fully and lovingly as I can, in every moment of now. Joy and happiness don’t really depend on external circumstances. My wholeness is not dependent on my physical condition. No matter what, I am held in the hands of God and I am perfectly safe. But my best chance of healing my body is by healing my mind and heart.

A cancer diagnosis can also seem like a personal failure, leading to thoughts of blame and judgment. I should have had more frequent mammograms. I shouldn’t have drunk so much wine. I should exercise more. Etc., etc. That kind of thinking comes from an illusion of control and self-reliance. We humans tend to make gods of ourselves. We get into thinking that if we can just have or do the right things then we can be immortal. We can be completely in control. That’s what leads to greed, acquisitiveness, hedonism, gluttony, and addictive behaviors. It is no accident that the first commandment is “You shall have no other gods before me.” We are wired to try to make our own rules. It’s essential to free choice, but if we make the wrong choices we will suffer for it.

My guided imagery CD for cancer has a disclaimer that it is a complement to, not a replacement for, medical treatment. Lily says they call that the “Quack Miranda Warning.”

I don’t blame my care givers for talking down to me. They don’t know me. They do this for a living, with a continually renewing cast of characters. I don’t know how well I would do their job. I can choose to take from it what is nourishing and life-giving and to let go of my attitude about it. That’s all I can do.

posted by Amy on Jun 8

One of the mysteries of seminary is the classes in “spiritual formation.” At least it was a mystery to me by that name. I was actually intimately familiar with the process to which that term refers, having experienced it myself. It was what transformed me from an atheist (or, more accurately, agnostic), compulsively self-reliant, hard-charging control freak into a Christian recovering compulsively self-reliant hard-charging control freak, with softer edges, much more patience, much more compassion, and a whole lot more faith. Believe me, there’s a huge difference between Amy today and Amy thirty years ago.

It’s no accident that the first commandment is not to have any gods before God, because that’s our default position as human beings. God gives us free choice, and we like to think that means we can be our own gods. When Bob Dylan said “you can serve the Devil or you can serve the Lord, but you’ve got to serve somebody,” I thought, “No I don’t. I can just do the right thing and be a good person and not serve anyone.” He was right. I was wrong.

The life I have, and my character, are the result of my past and present practices. By practices I mean embodied actions including speech, and by speech I also mean self-talk. As Brian McLaren points out in Finding Our Way Again, we change every day. McLaren says, “Spiritual practices are about life, about training ourselves to become the kinds of people who have eyes and actually see, and who have ears and actually hear, and so experience-with increasing consistency and resiliency. . .-not just survival but Life, capitalized and modified by insufficient adjectives such as real, abundant, examined, conscious, worth living, and good” McLaren, 17.

The stories I tell myself about my life, about my intentions and purposes, and about God, shape the way I receive and integrate each new experience as it occurs. The people I hang out with, and the ways I interact with them, also change me from day to day. My practices form me spiritually, for good or ill. The Christian church traditionally taught practices that are countercultural. They replace idolatry with holiness, competition and enmity with love, self-centeredness with adoration of and submission to God, and tribal identity with an expansive view of all humanity and all creation as being under the dominion of Christ as the Lord of all.

The life I have now is the life I have designed for myself and have spoken into existence in concert with the people around me. If I want a better life-more joy, peace, beauty, patience, kindness, forgiveness, love, and light, then I have to do concrete, physical things that will prepare me to receive God’s sanctifying grace. If I am not experiencing the abundant life that Jesus promised, if I do not see the fruits of the Spirit in my character, and if I want those things, then I have to change what I do. God gives the growth, but I must do my part. I think that’s what Jesus meant by telling us to seek the kingdom of God first, and by saying we have to give up our life to find it.

It helps to read books and take classes, to get some guidance and gain some understanding. But the main thing is simply to do. John Wesley called them means of grace: concrete, physical actions prescribed for members of his Methodist societies. There were expectations to show up, and be on time, to live godly lives, to visit the sick and the poor, to pray, fast, worship, search the scriptures, and engage in “Christian conferencing.” You can’t learn anything by just reading about it, or thinking it’s a good idea. You have to act.

They say going to church doesn’t make you a Christian any more than sleeping in the garage will make you a car, but that makes it sound like there’s some better way to become a Christian. I agree that just going to church doesn’t mean you’re a Christian. Christianity is a way of life, a road less traveled, a pilgrimage. But for me, and for many others, it started in church. And I stay on the path through worship and fellowship. Just showing up for it is a spiritual discipline. And the worshiping, praying, singing, studying and journeying with fellow pilgrims all have the power to change people fundamentally, from the inside out. I have seen it in my own life. I have seen it in others’ lives.

posted by Amy on Jun 3

Well, that didn’t take long. I joined an online support group for people with HER-2-positive cancer. I mentioned that I was Stage IV at diagnosis, and that I found that somewhat (understatement!) daunting. A member directed me to a thread someone started for members of the group to sound off if they’re Stage IV, and say how long they’ve been that way. That led me to some sites I found eye-opening.

Stage IV breast cancer is considered incurable. That makes it kind of an embarrassment in some of the “survivor” literature. Supposedly you have early detection, and you follow doctor’s orders, and you do your surgery, chemo and maybe radiation, and you lose weight and control stress and you become a cancer-free survivor. What do we do with people who don’t fit that profile? Well, according to a blog post I found, they are simply ignored. Not counted, not tracked, not much research money going into it. The whole post is here. But here’s an interesting bit from it:

METAvivor’s 5 MBC Misperceptions

Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.

Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.

Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.

Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.

Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.

I had melanoma in situ in 1999. The treatment was to cut it out, then to cut again to make sure there were clear margins. No one promised me it wouldn’t come back, or that I wouldn’t get it again. Yet after 12 years I’m pretty sure I can relax, except for wearing protective hats and clothing, and getting those annual skin checks. Not this time. I will never be considered a “survivor,” even if this cancer doesn’t kill me. According to this site, I won’t even be counted among those reported to have been diagnosed this year with metastatic breast cancer, because that was my initial diagnosis.

Statistics don’t apply to individuals. I have never let the odds against me keep me from going after what I want. I want to get well and stay well. I want to live well. But now I see sisters (as well as some brothers) who might need me to speak for them. This is a whole new arena to explore. (For a cool story about a 17-year survivor look here.)

I’ll be linking back to blogs and organizations dealing with metastatic breast cancer, and I’ll keep looking for articles and blog posts of interest. Don’t worry–it won’t increase my stress level. I thrive on this kind of thing.

posted by Amy on Jun 2

A classmate asked me what I plan to do this summer. She said “I think that’s the greatest gift cancer gives us–perspective.” Her son is a cancer survivor, so she is well aware of that truth. Here’s what I told her.

I hope to go to some beautiful places this summer, beach houses, retreat centers, etc. First I need to get used to the chemo, and rearrange some things (including my self-concept.) I have friends in Philly, and a daughter and friends in DC, so I’d like to do some trips to those places too. As long as I’m back in Boston every Monday in time for chemo at 3 (except the first week in July, when my treatment is on Tuesday, July 5) I have a fair amount of latitude.

Even before the diagnosis I was planning to leave the summer open. Now it’s a little more cluttered, but I still have a lot of unstructured time. I have two incompletes to take care of for school. I haven’t started on them yet; I realize I need to do that pretty soon. But I am trying to be gentle with myself. There are several changes I need to make or want to make. I am implementing them slowly. One change is to be sure I walk, bike or do yoga for an hour a day. That will boost my spirits and my immune system.

I found a Stage IV breast cancer support group where I’m being treated. It meets on Mondays, which will be convenient for me. I have also found some centering prayer groups around town. I think centering prayer works better in groups. I do it at home, but have trouble sitting for the full 20 minutes. I decided that the question to ask about groups is not whether it will help me but whether my presence there is needed. Just showing up-for others, for myself, is perhaps the most important spiritual practice. So I will be more faithful about showing up for things that are life-giving and light-filled.

What I meant by rearranging my self-concept is that I need to get used to physical limitations that I didn’t have before. I am used to having lots of energy and physical strength. I’m used to feeling good just about all the time. The physical demands that chemo is placing on my body will take some getting used to. In the past ten years or so I’ve learned to treat myself with more respect and compassion than I used to. This is an opportunity to keep learning and applying that skill.

I used birthday money from two of my aunts to buy an iPod Touch. It was delivered last night, and I’m figuring out how to use it, and adding apps to it. It will help me pass the time in chemo. During my first treatment I found it impossible to knit, and almost impossible to read, but listening is quite feasible. I have some audiobooks on it, plus my guided imagery and affirmations. I can listen to “optimizing chemotherapy” while the medicine is being infused. If the hospital has a wireless hot spot then I can even watch videos on Netflix.

I am learning to thank God at all times for all things. It’s hard to offer the “sacrifice of thanksgiving” for things that seem bad, but it is ultimately liberating. When my second husband left me in 2003 I forced myself to thank God for it. I was praying aloud, and my tongue stuck to the roof of my mouth as I began to say “Thank you.” But I managed to say it, and then I realized that I really was grateful. If he didn’t want to be with me, then I didn’t want him to stay. He did me a favor by dispelling my illusions about his commitment to me. I was still sad, and hurt, but it created an opening for healing to begin. Who wants to be married to someone who is only pretending? I also realized that God will never abandon me. God is always with me, and always welcomes me back when I wander off. It started me on a new knowledge of God’s love and mercy and healing that I know will last me the rest of my life.

posted by Amy on Jun 1

There’s nothing like a cancer diagnosis to focus one’s attention on what’s important. In that sense, I’m actually grateful for this new challenge. What if I lived 75 more years, but went through each day in a daze, worried about everything I have to do, stressing over petty details, falling in bed exhausted, never having any fun, never feeling the love that surrounds me and sustains me? Would that be living? I’m not saying I always do that, but I’ve certainly had spells that could be described that way. Now what if I only get another year, or five, or ten, but, as much as possible, I live each moment to the fullest? What if the miracle of creation is always on my mind? What if I am grateful for every breath I take, every day that God gives me to love? What if I finally start to pray without ceasing? Which would be the better life?

It would be great if we could wise up and get focused without some life-threatening shock to the system. I think some people can. I was already on my way to figuring out what real happiness and satisfaction are, and how to get it. Anyone who knew me thirty years ago can attest to that. I have come a long way. But now I realize I have no time to waste. The thing is, though, no one ever has any time to waste.

Whether I have 75 more years to live or only one, God’s plan for my life is the same. The Bible tells us how to live, how to treat each other, how to be in right relationship with God and with one another. The best way to live is loving and serving God, thanking God, being with God, letting God befriend, guide, sustain and heal me. That is real life. That is what I was made to do.

I did all I could to keep this from happening. I ate well, exercised, managed stress, tried to get enough sleep. We tend to think we’re entitled to certain outcomes if we do certain things. Religious people are especially prone to that. Why do bad things happen to good people? Because they do. We make some of our luck, tip the odds somewhat in one direction or another, but we really can’t control the ultimate outcome. All I can control is my thoughts and my choices. I can play the cards I’m dealt, or not, but I can’t deal them, and I have no control over the dealer. It is what it is.

The most important healing for me to do right now is emotional and spiritual. I think that will also give my body its best shot at becoming disease-free, but that’s beside the point.  My wholeness is not dependent on my physical condition. Jesus said he came so we can have abundant life. My task right now is to figure out what abundance really means.

posted by Amy on Jun 1

On April 8 I had a mammogram that showed a mass in my left breast. The radiologist told me I could plan on having surgery for that. Ultrasound showed one lymph node on the left side that was “a little too fat,” and some calcifications in my right breast. The radiologist ordered biopsies, which were done on April 13. When she took the cells from the lymph node, she said, “Might be nothing.” When she took the cells from the mass, it hurt quite a bit. I was pretty sure then that it was not going to be good news.

That’s the hardest thing–knowing there’s something wrong but not having any other information. What does it mean? How bad is it? What will treatment involve? Will I survive?

On April 19 my primary care provider called me in and confirmed that I have a cancerous tumor in my left breast and that there were also cancer cells in the lymph node. She said, “You’ve got a fight on your hands.” On April 21 I had my first meeting with the breast cancer care team at Beth Israel Deaconess Hospital in Boston. The doctors ordered a CT scan, bone scan, breast MRI, blood tests, and an echocardiogram. The MRI was done on April 28, and the other tests on April 29.

The CT scan showed lesions on my liver and lungs that raised a suspicion that the cancer might have metastasized. They also had an assay report by then, which showed that my cancer is “HER-2 positive” (“human epidermal growth factor receptor 2-positive.”) I learned later that HER-2 positive cancers tend to be aggressive and to spread. On the plus side, my bone scan was clear, and there’s no cancer in my right breast, just some abnormal cells. On May 17 I had a liver biopsy. The doctor taking the sample (guided by ultrasound) said the lesions had shrunk. He asked me if I had already started chemotherapy, and he went out of the room to study the CT scan. He took three samples, but said the target was so small (5 mm) that he wasn’t sure he had hit it.

On May 24 I learned that there is cancer in my liver. (So kudos to the radiologist. He saved me from a lung biopsy and saved time.) On May 26 I met with my oncologist. She recommended that I start on Herceptin, a drug specific for HER-2 positive cancer. It is a monoclonal antibody that helps my immune system destroy the cancer cells. It will be used in conjunction with Taxol, the “heavy” kind of chemotherapy that causes all the legends of cancer treatment (nausea, weakness, anemia, hair loss, etc.) It’s the one that used to be made from yew trees. I will receive these two medications intravenously once a week for 12 weeks. I had my first treatment on May 27. I will switch over to Mondays beginning June 6. After the twelve weeks of both drugs I will get Herceptin every three weeks for a year.

Although it’s a shock to go from feeling perfectly fine to finding out I have metastatic cancer, I am impressed with the precise diagnostic process that was followed. The metastasis might easily have been missed; the evidence for it was very slight and subtle. I feel and look fine. There is no palpable lump in my breast. I have no tumor markers in my blood. (This kind of cancer doesn’t leave tumor markers in the blood, so there will have to be other ways to track my progress with the chemo.) My liver function is normal. My oncologist says I have a very good chance of beating this back completely, and achieving a normal life span. She also said she’s sorry to be making me sick. I know it will be a fight, but I don’t have anything more important to do this summer.

I am in good spirits. It is a relief to be getting started on treatment, but I’m glad there was a careful, deliberate process of diagnosis. If they had thought it was Stage I or II they would not be pursuing the appropriate course of treatment. Even though it’s “Stage IV” cancer, it’s early in that process. The oncologist said that this kind of cancer can damage the liver to the point where it’s not possible to do chemo, so I’m very grateful for my healthy liver. I had the option of doing Herceptin with a lighter kind of chemo, but I prefer to take an aggressive approach now while I am otherwise in excellent health, and in the best condition to fight. If this regimen doesn’t work, there are a number of other options.

I have health insurance through BU and can’t be dropped. In fact I can switch to better coverage in August and they can’t deny me. I should be able to graduate on time next May. I have friends who can help me. I’ve known Jack and Sara for decades. They live in Somerville and have offered to help. I have a classmate who is a breast cancer survivor. She went with me to my appointment with the oncologist last week. I have new friends at the church I’ve been attending, and many friends in Philadelphia, which isn’t all that far away. I have a daughter in DC who just got a Master’s degree from Georgetown. She doesn’t have a job yet, so she’ll have time to come help me, and she wants to. Boston is a leading cancer research and treatment center. I’m lucky to be here. So, all in all, there’s much reason to hope for many more years of trying to figure out what God wants me to do and to do it.

The chemo wasn’t too bad. The effects were as predicted, and certainly manageable. It beats the alternative. I am trying to regain my sense of balance, which depends on redefining who I am. It also depends very much on my relationship with God. I know that, ultimately, I am in God’s hands and I am perfectly safe. I’m not afraid of dying, or even of suffering. I’m just trying to find meaning. What is God’s will for me now?

One of my best friends is a breast cancer survivor. She recommended a particular kind of guided imagery and affirmations. I was doing those, plus praying a lot and drinking lots of green tea, in the time between the CT scan and the liver biopsy. Could that be why the lesions shrank? I’ll never know. I certainly won’t forgo medical treatment, but it is very heartening to think that I can be proactive, that I can help my immune system handle this situation. Meditation, centering prayer, yoga, prayer, and guided imagery and affirmations certainly can’t do any harm. It’s better than passively waiting, or freaking out.

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