Bald Barbie

I'm the glad the clamor for the Bald Barbie has died down. Last month people were petitioning Mattel to make a bald Barbie doll so that kids on chemo or who had alopecia could have a doll they could relate. I'm not even going to go into all that because at the time I couldn't stop thinking about an experience I had in October at the Uganda Cancer Institute in Kampala interviewing kids with cancer and their parents.

Her belly was swollen and hard and you would swear she was nine months pregnant—except that she was three years old and sitting on her father’s lap. Veroneeka had a Wilms’ tumor the size of a football.

Veroneeka’s father explained to me that he sold his whole crop just to get to Kampala. He was thin as a bamboo pole. He handed me the prescription for Veroneeka’s chemo. It was a long list. I recognized a chemo that I myself had had: Cytoxan. I didn’t envy her.

It turns out I didn’t need to envy her because her father couldn’t afford it. The Ugandan Cancer Institute, as often happens was out of medicines. If that’s the case, then they write you a prescription for chemo and then you go to the pharmacy to buy it. The pharmacy might not have it. If they do, you return to the hospital and they give it to you there.

Chemo in Uganda is a bargain: six-hundred bucks cures most kids with lymphoma. I interviewed parent after parent and the story was the same: they spent everything to get diagnosed and get to Kampala. So there was no money left for chemo.

I wanted to reach into my pocket and say, “Here. Six-hundred bucks. Take it.” But I didn’t have six hundred dollars in my pocket.

What I did have was a backpack full of food bars and little stuffed animals. So when the interview was over, I gave Veroneeka a stuffed dog with ridiculously enormous eyes. She simply sat there silently turning it over and over.

Then I asked her father, “Well, if you have no money, what do you eat?”

He answered, “When Veroneeka does not finish her meal, I eat what she has left.”

I stood up and reached into my pack. “Please take these.” I stuffed food bars into every pocket of his worn shirt. And when he stood up to leave I gave him some more which he put in the pockets of his pants.

He took Veroneeka’s hand and I watched her waddle away. Six hundred dollars to cure her. I considered the cost of my equipment.

My video camera would cure two children. My microphone or twelve pairs of my headphones: one child. I’ve been doing these calculations since I got back. So when I read about the push for the bald Barbie, I did the math in my head: at twenty bucks a pop, thirty Barbie dolls would buy chemo for one child.

And like Veroneeka, I simply sat there silently turning it over and over.

Oh, RATS!

It's really hard complaining about anything once you've had cancer, or once you've been a chaplain because you've heard all kinds of really sad stories that makes your complaint look pathetic and ridiculous.

So last Monday when I tripped while running and tore my hamstring, even though the pain was second only to breaking ribs, I felt like, "Oh, geez, well, it's not cancer," even though it meant I spent two days in bed lying on ice packs and gulping Aleve. And I could not sit down on anything. ANYthing if you get my drift. My doctor said, "It's because you're sitting on swollen muscles."

Swollen muscles. I got this image of a horse's rump that has been pounded by sledge hammers. "Hamstrings take a really long time to heal," he said. "A really long time."

So then on Friday when I woke up with chest cold that went up into my head I thought, "Hamstring tear and a bad cold. Well, it's not cancer."

But Sunday night was the last straw. I opened the towel drawer in the bathroom and there was a stack of gnawed towels and piles of RAT SHIT!!!!!

Yeah, yeah, I've had cancer and that sucks but RATS?!!!! I am so grossed out I can hardly stand it. We set a trap.

But the point of this post is that cancer kind of ruins guilt-free whining about the normal everyday things. But now that I think of it, being aware of the rest of the world sort of ruins it.

Maybe that's the point of awareness, to ruin our complaining, to realize that it is not really necessary to whine about anything. What percentage of the world share their daily lives with rats?

The trick is to laugh at yourself as you complain and then pray for the rest of the world.

Well, thanks for letting me work this out with you. I feel much better in all ways. And now I've got to get to that trap.

The Feel Bad Talk

A few week ago I received this message from my friend Jon who is an oncology nurse.

"Can you write a wonderful meditation please on the spiritual needs of those of us who give care and support to those who have a cancer diagnosis?

Cancer patient care-givers (family) and patients get a lot of air time (and rightly so) regarding what they deal with, and I have been in a caretaker role with my dad as he was dying with metastatic prostate cancer so I get that. I don't think that the mental, spiritual, and probably physical impact of what we do as nurses (and yes, physicians and other providers as well) is well understood. Many speakers address this issue but, from my perspective, it is presented in a "nurse appreciation day" format that lacks depth and appears to be somewhat cliché. It seems to be a "feel good" talk that lasts until the next day when it is back to business as usual.

Speaking for myself (which is all I am able to do) I agonize over patient outcomes. Every patient that dies reflects another life I have been touched by, which I feel as a loss. No matter how compartmentalized I try to make my interactions with the people I am privileged to share lives with, I can't escape the impact of their death. When I don't feel that loss, I will no longer be able to do my job. This is a catch 22 situation which is not understood."

Well, Jon, I understand your frustration with the "feel good" talks. So I hope you're holding onto your lab coat because I'm going to give you the "feel bad" talk.

I know you and I know the good work you do. You say the compartmentalizing is not working out, so why not just let everyone you meet really touch you? Let every crappy diagnosis you encounter make you even more fiercely determined to live life to the fullest. Continue to feel the loss which means you will feel bad and sad and basically shitty. Whatever made you think you could do this job and never feel that way?

But here's the question I ask you and always ask myself, "Would I rather have not met this person so as to avoid the grief of losing them?" When it comes to love, everyone loses at some point because EVERYONE DIES. This is the state of our existence. But would you rather never love? Of course not.

Let yourself cry until you think your eyeballs will fall out. I've done this very recently and though it now takes my face longer to recover, my heart feels calmer and lighter almost immediately.

You can see you are getting no sympathy from me because my experience is that sympathy is no help at all. I find when I want sympathy it is because my slobbering dog of an ego really wants strokes for how noble and courageous and compassionate and "special" I am for doing this work. So I pat the doggie on the head and say, "Yes, you are noble, etc. and how great that you get to do this work. Now get on with it."

I think when we are doing our best work, we are simply channels for the Spirit. I love that feeling of Spirit working in and through me. It's so freeing because then I don't have to be in control!

But the downside of that is that I don't have control! Talk about Catch-22. We certainly have no control over Death. For me, doing things that I can control helps mitigate all that loss and powerlessness I often feel. So that means I bake bread, I make mosaics, I write, I garden, I walk outside. In all these things I control the variables (except perhaps weather and slugs).

And I spend time goofing around with friends which is why I posted the pic of me drinking a Margarita. So I ask you, Jon, what night next week do you want to have a drink?

YouTubeDebutUpdate

The video in my last post just received an Award of Merit from the City of Hope ACE Project. I'm thrilled! It's up on YouTube so everyone can access it.

I wish Denise Echelard was still here so that I could see her face as she watched the final edit. I do think that somewhere, somehow she knows what is happening and is getting a big kick out of it.

Denise died a year ago this month. But here is what you should know: she quit her cancer treatment in January of 2009 and her doc told her she would be dead by March 2009. She received palliative care (no treatment) and had a pretty damn good life until around late September 2009.

That is the power of palliative care--and Denise. She was a force to be reckoned with: strong and funny and open and intense.

Denise, where ever you are: thank you so much.

Note To Self

I received this message today (w/names omitted and edited for brevity):

I know you probably get plenty of emails from bewildered individuals like me, but can I just say I really need some advice, just like all the other bewildered. I have even re-read your book, seeing if it answers
this big question, and maybe you did, but since the answer wasn't lit up in neon with the preface "HEY YOU: HERE IS YOUR ANSWER," I missed it.

And maybe the answer is in there, but it is hard to really "get it" because it is a life experience, and like all the books on childbirth, which even told me all about childbirth, it just didn't tell me about MY childbirth. Somehow uniquely surprising. So apologies if you did actually answer my question, but could you re-phrase the answer?

The background: My neighbor has Stage IV breast cancer. AND she has three children. (You are probably getting an inkling where this is going?) And, well, she is ~my neighbor~ and this is, you know, the Pacific Northwest. We have, for a decade, pretty much minded our own business (even though our kids play every once in a while), there is no deep and meaningful relationship-- just our nice, you-on-one-side of the
street and me-on-the other-side, sometimes a pleasant nod and a wave.

So. A neutron bomb has gone off and it is time to change our lovely distant relationship because well, it seems pretty non-optional in light of all the care that is going to be needed. And I have even tested that
idea out on several different clergy and no one has disagreed with that statement about non-optional relationship change (freaking Christians).

Plus, I pretty much know this is what I am called to be doing. How? Because anytime that I have been called up by God it has involved something that scares the beejeezus out of me, I try to come up with some good reasons to avoid it, it has involved caring about someone other than myself (some of those times people have fit into that neat, other-side of the street definition) and has involved giving up my brilliant plans for the near future.

The question: How do people live through something so incredibly scary and sad? It has been easy to go into organization hyper-mode because order is so lovely, and so impersonal. But it is the personal stuff that
is next on the agenda, I am imagining. The personal stuff of seeing my neighbor get really sick, and frail, and maybe even unable to care for her kids. And maybe even talking about scary things like dying and what will happen to her children.

How in the world do people do this? How in the world does someone go through something like this with another person? How in the world can I do this?

Thanks for any advice, your experience and your wisdom. I will really appreciate it because so far one of my coping strategies has involved closing the blinds to avoid looking across the street. And we all know reducing any form of light during a Northwest winter is a terrible idea.

Yours,
Stumped

Dearest Stumped,

Here's my answer to your question: How in the world can I do this?

I want to warn you that my answer is such a cliche, such well-worn advice that you have heard a thousand time that it may make you want to spit.

Here it is: One day at a time.

Seriously. That is how people go through life, because really, you can't actually go through any other way, now can you? You are trying to be in a future that you don't even know will happen. How do you know you will see your neighbor "get really sick, and frail, and maybe even unable to care for her kids. And maybe even talking about scary things like dying and what will happen to her children."

How do you know that's going to happen? How do you know she will talk to you about dying? How do you know it's going to be scary and sad for her? Or did you mean for you?

So how in the world can you be with your neighbor? One day at a time.

When you were pregnant did you spend all your time thinking about delivery? It never hurts to be informed, but how could you spend every day worrying about the delivery? You would entirely miss the life that was happening right in front of you. Childbirth! Talk about scary!

Here's an idea. Give her a copy of my book. Then you will have something to talk about that isn't directly about her, but the conversation may get to be about her.

And you know what? Don't assume that she will want you to get all neighborly all of a sudden. I just now started thinking about neighbors on my street that I don't know well and how I would feel if they were suddenly coming over all the time. I would freak out!

You may want to be closer, but don't assume that she does. And you can't take it personally if she doesn't.

I think perhaps today is simply Bewildered Day, because I, myself have been in a State of Bewilderment for most of the day. So you are not alone. In fact, the first thing I did this morning was write to two close friends asking for advice. My subject line: Help Me! So there you go.

I hope this helps. Don't hesitate to call or give my number to your neighbor in case she wants a (im)perfect stranger to come in and listen to her talk about her experience.

It's great that you care, Stumped. If I thought worrying helped ANYthing, I'd say, "Angst away, my friend!" But it doesn't, so don't.

Be here now. One day at a time.

Thanks for writing and reminding me.

Ashes To Ashes, Time To Dust

"You are butt dust and to dust you shall return."

Luckily I don't have a problem with butt dust. But (there it is again!) for the first time in seven years I almost forgot yesterday was Ash Wednesday. That is because I am not working at the Seattle Cancer Care Alliance as a chaplain right now.

For the past seven Ash Wednesdays I would play my cedar flute at a noon service in the chapel. Then another chaplain and I would go around and dispense ashes to any staff, families and patients who wanted them.

A patient told me, "I feel marked for death because I have cancer. But we are all marked aren't we? That why I like Ash Wednesday: other people receive the ashes and realize they are marked too."

She had a point. You know how people look at you when you have ashes on your forehead? It's very similar to the way they look at you when they find out you have cancer.

This is how having cancer improves your vision: you can see the ashes on everybody's forehead.

Dumbledore To The Rescue

I’m always looking for new ways to talk about death. The latest was given to me by a patient named Elizabeth who, like myself, is a big Harry Potter fan. She also is the mother of two small children and has an aggressive type of breast cancer.

I’m sure by now you all know that Harry’s mentor Dumbledore died in the next-to-last book. Both Elizabeth and I agreed that what we found so moving and inspiring was Dumbledore’s influence on Harry after Dumbledore’s death.

“You know,” she wrote in an e-mail, “Even though Dumbledore really did die, he continued to “exist” for Harry, not in a supernatural way, but in whatever knowledge, insight, wisdom and courage he gave Harry before he died. I think it’s the same way for us. We can set so much in motion by affecting the way people will think and act as they move through the world. And if you listen hard enough to know who they are and what to give them, people will figure it out without you.”

Of course the “people” to whom she is referring are her children. Elizabeth and I have talked about death before and as she said, “I’m perfectly okay with death, whenever that happens. I suspect I’ll have the easy part. But thinking about my kids without a mommy/protector/secret keeper scares the living crap out of me.”

“What helps you with that?” I asked.

She answered, “When I start to freak out about my kids losing me, I can chant the ever-so-comforting mantra ‘Dumbledore.’ And I think about all the Sirius Blacks, Molly Weasleys, and Remus Lupins who would love and care for my kids because I convinced them to love us, and even the reluctant Snapes and Aberforths who would help them because I'm going to convince them they must. And course my husband would be pretty reliable too.”

Almost every parent I meet considers their kids to be special. Harry Potter is special and he is also an orphan and that is the fear of every parent with cancer—that their kids will be without a mom or without a dad.

I want to comfort other patients and explain to them about Dumbledore “existing” after he died and that they will too. I want to urge them to look for the Molly Weasleys and Remus Lupins in their lives.

But many people haven’t read Harry Potter.
So I’m thinking Harry Potter should be required reading for every parent with cancer.

Or just anybody.

Take Note

Just when I think I'm all totally grown up and able to clean out my closets and basement and purge my life of extraneous crap, I run into something I've been saving since sixth grade. And I can't throw it away. It's a note that was somehow intercepted by my friend Russell who got it from his friend Mike.

Background: I had a huge crush on Dan (the subject of the note) since fourth grade. We were good friends because in spite of the fact that I talked a lot, I also listened. So that made me the confidant of almost all the boys because they could tell me with whom they wanted to go steady or were going to ask to go steady (whatever that meant!) and up with whom they were breaking. (I'm pretty proud that I did not end that sentence with a preposition. Where are you Mr. Scheckler?)

ANYway, Katy and Martha were two girls in my class who were best friends. What I remember about Martha is that she talked about how she put her pubic hair in doll hair curlers. What I remember about Katy is that she had beautiful handwriting. They too had a crush on Dan until THIS NOTE.

In case you can't read it:

Dear Mike,

Don't tell Dan Our dreams. You can tell him we are loseing [sic] interest in him because he doesn't like us anymore and he loves Debbie Jarvis. We would like him if he liked us. (Tell us what he says!) We would tell you more but its [sic] embarrasing [sic]("forget it" is crossed out). Don't show any body [sic] this note, please.

From, Martha and Katy F.

I remember getting such a thrill when I read that. He loves Debbie Jarvis? He loves me? He loves me?

Of course everyone saw this note including Dan and that's when he stopped talking to me. He mostly talked to me about "loving" Nancy G., but now he didn't want anyone to think he "loved" me. But for one day I believed that I was the object of his affection. I read that note over and over. And in a very weird way, reading it now still thrills me, but for a different reason.

It thrills me because I can see how from the beginning, as far back as I can remember, kids, people liked to talk to me about their secrets, their desires, their hopes, their fears. This is pretty much what I do now, just be a friend and listen. I hated this in Jr. High because I wanted a boyfriend, not a "friend" friend. Thank God I went to a different high school from my childhood friends. Nobody at the new high school knew I was the girl who was "just a friend" to all the guys---although that's how High School turned out too.

This note takes on a special poignancy because a couple months ago I reconnected with an elementary school friend who let me know that another boy on whom I had a crush was still living in the area. He married his high school sweetheart and she had just had a recurrence of cancer. I immediately sent them a copy of my book. But last night I found out that she is dying and has just entered the hospice program.

How can this be? I can only see him and his wife as Jr. High school students and Jr. High kids don't die of cancer. News Flash, Jarv: You're not in Jr. High school anymore. My friend requested prayers for them. So of course I will pray for them, that they would have courage, and peace and comfort and ease.

I'm keeping that note and I love that forty years later I can still be a "friend" friend and offer up prayers. I wouldn't want it any other way.

Well, all this book stuff is great fun and I love walking into bookstores and putting a stack of my books on the counter.

The salesperson asks, "Would you like to pay for those?"

And then I say, "No, I'd like to sign them!" Hee-hee! I wish I could be more dignified about this, but I tell you I'm practically wagging.

I'm also having fun speaking everywhere which I usually do for free, just travel and lodging. I said to my friend Carla, "I feel like such a whore because I'm saying, 'Yes!' to anyone who asks me to speak."

She said, "Whores get paid. You're more of a slut."

So there you have it, I'm a Speaker Slut--but only until the end of 2007. That will end the first trimester of my book's existence, which as many of you know, is the most important time period for the growth and development of a book.

After that I must cut down on the speaking because I do have a job I love at the Seattle Cancer Care Alliance. And I will have to be professional and ask for money.Wednesday I leave for Houston to speak at M.D. Anderson. I love looking at all these other cancer centers and see how they compare to the SCCA.

I went to a big cancer center in central New York. They had a gorgeous lobby with a pianist playing a grand piano. The gift shop was huge. Beautiful art everywhere.

The infusion suite was small, dark, cramped and strung with cheesy Halloween decorations. There were no windows. I don't remember seeing any beds. How could you fit a supportive friend or family member in these little cubicles, let alone a chaplain?

One last word about my central New York speaking tour: here is actual quote from the organizer of one of these luncheons: "Many felt that the subject of death and dying was not appropriate for a group of survivors and supporters."

Then who is the appropriate group? I must tell you that I'm not a downer cow when I talk about death. It's actually pretty funny and entertaining. And when you get a cancer diagnosis you always think about death. I gave a similar talk here in Seattle and they loved it. Go figure.

In other news, my MRI last week was clear. Woo-hoo! However I still have osteoporosis in my hips, but in my spine it's been downgraded to osteopenia.

No sky diving for at least another life time.

On The Road

Susan, thanks for your kind comment. It was an honor to marry you and Rich.

And now for the news: I've just returned from a nine day speaking tour in upstate New York. It was eighty-five degrees the whole time and my friend Carla and I thanked All That Is Divine for air-conditioning.

We drove from town to town and I spoke at three different Susan G. Komen events. They were all lovely, but the most fabulous was in the tiny town of Elmira, New York. They have no paid staff, only volunteers. The event was magical: organized, beautiful, well thought out. The people were kind, warm and generous.
I'm just now getting feedback from all these talks and I've managed to piss off a lot of people because I wasn't "preachin' Jesus" and I talked about death. The folks that loved my talks, loved it for those exact reasons.

Yes, of course I know that I can't please all the people all the time, but there is still this little kid in me that feels a bit stunned. Especially when I read a comment from a woman who is praying that I get back on the straight and narrow, quit using "shit" in my writing (oops) and stop talking about Buddhism.

Here's how it's shaking down: Those Who Have Never Had Cancer: didn't want to hear about spirituality or death; Cancer Survivors: loved hearing about both; Newly Diagnosed: Scared Shitless. (oops) Everyone agrees that my talk was unforgettable and that people are still talking about it.

New York state is fifty percent Catholic unlike my own state of Washington which is the most "unchurched" state in the nation. (And proud of it!) I realize what an amazing liberal bubble I live in here in Seattle. I'm speaking at the Komen Event here on October 27th and will rethink my talk--but not much.

If my goal is to sell books, then I have to tailor my talks so that people will like me. If people like you, they buy your books.

But you know what? That's not my goal. My goal is to get people thinking about death and dying and get comfortable talking about it. Talking about does not bring it on. If talking about something brought it on, I would have lost five pounds long time ago.

Being able to talk about death is freeing. I think that's why cancer survivors loved my talk--because cancer forces you to think about death. They've all had to think about it and it was refreshing for them to hear someone speak publicly.

As more responses come in, I'll share them with you. Tonight is my first reading at Third Place Books in Lake Forest Park. Wine and cheese at 6 p.m. Reading at 7 p.m.! I can't wait.

Fame or Enlightenment?

It’s Not About the Hair: And Other Certainties of Life and Cancer is coming out in September. I find the whole thing all very exciting. No, this is not my first book, but it is my first hardback which makes me feel all writerly and proper.

“You’re going to be famous!” This has been said to me several times in the past two weeks. Even my own dad said, “Honey, I hope they sell lots of copies of your book and that you’ll get famous.”

I said, “Dad, that’s not my goal. I just want to make a difference—help someone on their journey.”

At first I wondered if people thought that was one of my values, as if the goal in my life is to be famous. Then I was in a meeting last week and we were saying good-bye to a guy who is going off to get his MFA in directing.

“You’re going to be famous!” someone sang out.

He laughed, embarrassed and said the exact same thing I said, “That’s not my goal.”

It occurs to me that this is simply a value of our culture where everyone is trying to get on TV, have their Warholian fifteen minutes of fame, or even just be famous for being famous. (I refuse to write her name.)

Recently I was reading some Sufi stories and some Zen stories and they often start out: “There was a man who was seeking enlightenment.” (Okay, so they weren’t gender inclusive.)

Seeking enlightenment! Imagine that! No one has said to me, “Oh, you’re going to be enlightened!”

Cancer doesn’t care about your degree of celebrity or enlightenment. It’s an equal opportunity disease. Perhaps fame may get you better medical care, although it shouldn’t. But fame won’t affect your response to chemo or surgery or radiation. But perhaps enlightenment does. So I’ll continue to seek it.