My biggest reason for disliking (I started to write "hating" but I don't want to be a hater) the Blue Angels is because of my friend Claude. He died of AIDS in 1992 in Bailey-Boushay here in Seattle. I spent a lot of time with Claude at the end of his life. Three days before he died he was going in and out of consciousness like dying people often do. 

I was sitting with him when the Blue Angels flew over Bailey-Boushay. He opened his eyes in terror and cried, "What is that?!" Now Claude was a deeply spiritual person and we had very open and direct conversations about dying, death and the possibility of an afterlife. 

So when I answered, "The Blue Angels," he sat up gasping in horror. 

"Angels? Are you sure? Are they coming for me?" The noise was deafening, frightening. 

I tried to explain but I had to shout over the noise which just upset Claude even more. He grasped my arm with that unexplainable strength of a dying person and shouted, "Why are you screaming?" This would have been funny if he were not so terrified, and drug addled and, well--dying. 

All I could do was lean over and hold his bony body and pat his shoulder blades that stuck out like pancake turners. "It's okay, it's okay. You are safe." 

I was glad he couldn't see me crying. I, too felt scared as if we were under attack--and of course we were--but not by the Blue Angels. 

Now every time I hear or see the Blue Angels I have that same angry/sad/ terrified reaction and have to tell myself, "It's okay, it's okay. You are safe."

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.

Good Friday

I read the obituary page every day. I say each person's name aloud in my head--especially if the obit is very short and makes me wonder if any body cared. (I suppose if no one cared there would not be an obit.) I really like when they show a photo of the person in their prime and then one of them wrinkled and saggy, the experience of life etched on their faces.

Seeing the two photos is such a good reminder that this is supposed to happen: the aging, the wrinkling, the hair turning white. It's not sad. What makes me sigh with sadness are photos of young people in their prime and that's it. They died. They will never age.

That's why I like Good Friday because it's reminder that all of us, at some time in our lives, have been or will be crucified. (Don't believe me? Think of junior high.) I even like that weirdo, in-between limbo that is the Saturday before Easter. When I was kid I used to wonder, "What happened to Jesus's molecules on Saturday? Were they rearranging themselves to make him alive the next day?" (I was into the idea of molecules.)

I like that rearrangement idea. Usually we have to rearrange some things after we've been crucified: our ideas, our identity, our opinions, our emotions. We do that so that we can rise again.

May your rearranging and resurrections go well. Peace to your molecules.

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.

The Closer

Today I was the Closer.

In baseball the Closer is called in to clean up the mess of a game or to keep any gains from being lost. In medicine, the Closer’s job is similar—smoothing over sticky situations or tying up loose ends and saying good-bye. This can happen before a patient is discharged home to get well or before they are discharged home to die.

In the latter case, the Closer is not necessarily the doctor. It turns out to be the person who has the closest relationship, the most credibility with the patient. And sometimes the Closer is me, the chaplain.

The doctor, the nurse and the social worker had all told the patient she was going home to die but she didn’t believe them. I ran into her family in the waiting room.

“You have to tell her there is no more treatment left,” her daughter said. “Tell her the cancer has spread everywhere.”

But I knew that is not what I needed to say to make the patient understand she was going home for the last time.

I had known this lovely woman for the six years she had been treated for angiosarcoma, a rare vascular tumor. I never saw her without her wig and make-up. The first couple years it was easy for us to talk about dying and death. But as it happens with many patients, the less hypothetical death gets, the harder it is to talk about.

I sat down next to her bed and took her hand. “I have an agenda,” I said. This is exactly what I was trained not to do. A chaplain should never come in with an agenda and the focus should be on the patient’s needs and not the chaplain’s.

She squeezed my hand and smiled. “You’ve always been honest with me,” she said.

I knew that I didn’t have to talk about the futility of treatment, the extent of her cancer or multiple organ failure. She looked right at me so I seized the moment. “I’ve come to say good-bye.”

She was shocked. “Good-bye?”

“Yes. Years ago you and I talked about this day coming and it’s here now. So I want to thank you for all our wonderful conversations.”

She blinked, still unbelieving. “But I wanted to die vibrant and kicking.” Ball one. This was going to be harder than I thought.

“I know. But people with cancer don’t usually die that way. If you want to go out vibrant and kicking it’s best to have a massive heart attack while doing the cha-cha.”

She smiled. Don’t think it’s easy to say stuff like this. But as the Closer you know what your job is and you have to do it. The only reason I could say it was that it true and not saying it would hurt her even more.

I continued my farewell. “I always looked forward to seeing you in the clinic for chemo. I loved talking with you and your husband. But I know it sucked for you.”

“No, no! It didn’t—it wasn’t bad for me! I looked forward to seeing you too!” In spite of all the pain meds on board, she was still the gracious hostess. “I loved talking about books, and wigs and jewelry and praying with you. Thank you so much for being there for me.” That sounded like a good-bye. Strike one.

For every chemo she received, I had laid my hands on the chemo bag and prayed over it. My prayer was usually something like, “May this chemo help her body remember how to heal itself.” Her body had healed itself for six years, which is pretty good for angiosarcoma.

She adjusted her wig and said, “I just don’t want to give up hope.” Ball two.

What does this mean, “to give up hope?” I hear this all the time, as if accepting reality is some moral failing. As if it’s not possible to both accept the reality while hoping for a miracle healing.

“What are you hoping for?” I asked.

Silence. For a long time. Strike two.

“Perhaps what you’re hoping for has changed,” I said. “Maybe it’s time to hope for a peaceful death, or comfort for your family or hope that you’ll be able to let go gracefully and gently.”

I waited a moment before saying, “I think it takes more courage to let go graciously—“ I opened my palms gently, “than to hold on tightly.” I clenched my fists until my knuckles were white.

She stared at my hands and tears rolled down her face. “All right. But I’d rather be doing the cha-cha.”

Strike three—and my turn to cry.

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.

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.

Another Wedding

When the invitation came it sounded like a blast: a family wedding in Cambridge, Maryland in the beautiful home and garden of our cousins. We knew the celebration would be fantastic. But when it came time to go, all I could think was, “If only I could stay home this weekend, I could get so much done.” I felt frazzled, thread-bare, worn and unfocused. If only I could stay home and catch up.

I would tell you all things I wanted to do, but frankly, I’ve totally forgotten about what I was frazzled. All I can say is that I went from a world where I felt it was “all cancer, all the time,” to one where we were eating crabs with all the cousins and spraying one another with flying shells and laughing and drinking and proposing toasts and reminiscing about the generation before us which is all gone now and realizing that we, yes, us, were up now as the “leaders” in the family, the older generation, but we all felt like lost children and wanted so badly to have another line of family in front of us.

But it was not to be.

I think about death a lot because I work in the cancer field and I’ve had cancer and I’m starting to promote my book so people are asking me questions about dying and death. But this wedding (which was a family reunion of sorts, as all weddings are) made me think about death in a nostalgic, wistful way as opposed to a medical way. Perhaps it is because the elders in my husband’s family did not die of cancer, but died at pretty ripe ages of pneumonia, Alzheimer’s, a heart condition. So far no one in his family has died of cancer. How refreshing. I actually forgot that people do die of “old age.”

So our flower girl is now a married career woman and a mother of two. Her daughter was the flower girl in this wedding. Time seems to circle back on itself and I found myself thinking a hundred times throughout the weekend, “How can this be?” Because of course I still feel like I’m thirty-two, the age at which I entered this family.

But when I sat in our hotel room putting on my make-up in the bright sunlight I realized with a shock that I did not have the face of a thirty-two year old. And I had to remind myself that this is what is supposed to happen: you age.

The fountain of youth is in Seattle because it is usually overcast and without all that nasty harsh sunlight, you can’t see how old you really are.

But one of the great things about aging is that you just don’t care so damn much about what everyone thinks. How else can I explain why, after working out at an Orlando hotel last month, I jumped into the pool in my athletic bra and panties? There was nobody there and my panties were brightly colored and just how different are they from those nearly transparent Speedos that men wear?

I rest my case.