A double rainbow this afternoon - breathtaking through a light rain - took me back to another amazing double rainbow. On our first day of vacation this May, I'd just driven through a squall and Sandy said, "Wow, that's amazing." I thought she was talking about the rain, but she pointed - and there it was, a stunning rainbow. We could see the full thing, from one side to the other. And then a second rainbow appeared. We were both giddy.

We'd just been to the fake Stonehenge in Maryhill, and we were approaching Pendleton, Oregon, where we stayed that night. Sandy had had some nausea earlier but we were pleased with ourselves for actually getting the car packed and hitting the road that day, and we had no idea nausea was to be her norm. It was the first flush of vacation; we felt free and excited. We took the rainbow as an indication that this was a special day - and that good things lay ahead.

Sandy at the Stonehenge memorial in Maryhill, Washington

Pondering epitaphs

Synchronicity continues. A few months ago, I read a review of The Curfew, by Jesse Ball. The book was highly recommended, said to be beautifully, powerfully written - and the plot was described as a man and his young daughter playing games with words and orange peels and bits of strings while outside their small apartment, all was violent. I put it on hold at the library.

I read it today. It is powerful, well-written, kind of magical in a way. I read the entire thing out loud; the words felt good coming out of my mouth. (And I felt Sandy's presence, so I read for her, too. But it was the kind of book I'd have read out loud anyway.)

But there is a theme through the book that wasn't mentioned in any of the reviews, and that's where synchronicity comes in again. The protagonist thinks a lot about the wife he lost, about grief. One bit I read repeatedly:

What does dying do to plans one makes with one's beloved? It is the advent of lost causes, of pointless journeys, empty rooms, quiet hours.

He is also an epitaphorist, a word and career Ball brilliantly invented. The protagonist visits the loved ones of deceased people and helps them compose epitaphs. It's a lovely occupation, really, an opportunity for poetry and for offering peace.

I know where I want Sandy's memorial bench to be, and soon I'll figure out how to make it happen. But I haven't known what to put on the metal plate to commemorate her. Something about bicycling? Something about love and laughter? One of the epitaphs she joked about? ("It was just here," because she was always losing things, and "What did I say?" because she was frequently clueless when she'd offended someone.)

There was an epitaph in the book that I loved: "Elsewhere and beloved."

Short, sweet, simple, and true.

Or maybe, "Without love, we are lost" - the words that hang above our dining room table, words she chose for our home when we were in Ashland at the Shakespeare Festival.

Or the quote from H.G. Wells "Every time I see an adult on a bicycle, I no longer despair for the human race."

Everything else has come in its time, almost certainly with her assistance, so I feel pretty confident that I'll know the right epitaph soon. I'm looking forward to finding out what it is.

Every time I lost her, she returned to me

Four months ago today, on July 29, I called 911 at about 6 a.m. because Sandy was unresponsive. It had been a very hard night, our second night home from the hospital.

The first night had been good, reassuring. She'd had some energy and some optimism that first morning, eating the biscuits and fried eggs her mother and I made for her, reading a New Yorker and shouting out commentary about what she was reading. Things almost felt normal. And then her constipation had become unbearably painful, and she finally fell asleep just in time to have to wake up to go to radiation.

After her radiation treatment, we met with the radiation oncologist and the nurse. While we were talking to them, Sandy was suddenly in terrible pain. Her head was pounding; she was whimpering and shrieking in turn. I pointed to her and said, "This. This is what keeps happening. What can we do to help her?" The radiation oncologist looked at her and said, "This is not typical."

How many times did I hear him say her reaction was not typical after the first negative response and then that day? How many times did I tell him I didn't care about typical - I cared about Sandy?

Lying down with a cool cloth on her forehead helped, and then our goal was just to get her back home. Her mother had gone out to lunch with relatives, so a very kind aide wheeled Sandy outside while I fetched the car, and then she and I somehow made it back into the house when we got home. She lay down on the sofa, took pain pills, ate a little bit. And vomited almost immediately.

She'd made a massage appointment that morning, when she'd been feeling good, and she was determined to keep it. We had to park a couple of blocks away, and she painfully trekked to the massage studio with her walker and me to steady her. I helped her get ready and left her in the hands of a masseur she hadn't met before, after talking with him about her fragility and giving him my cell phone number. When I returned, they had just finished. He told me she had vomited, but they'd gotten it cleaned up okay. As I helped her dress, I asked her how it had gone. She wasn't at all satisfied with the massage, but didn't think she'd had any nausea. She had no memory of vomiting. As an isolated incident, her lack of memory would have disturbed me. Given all that she'd been through in the past two weeks, I was just glad she wasn't ashamed.

I'd bought food for us while she had her massage, but she didn't really want it. She wanted to go to the TV room, to spend some time on her computer. We laboriously made our way down the stairs and she settled in at her computer desk; I took my food out and started to eat. Almost immediately, though, she said she wanted to go back upstairs. I suspect her computer confused her. Just then, the doorbell rang. Emily and Jo had arrived with flowers and support, so I enlisted their help in getting her back up the stairs to the living room. She was growing increasingly confused and tried to use her walker on the stairs. She'd just lain down on the sofa when again she vomited.

It was an awful cycle, one that we repeated several times over those last five weeks. She needed to eat in order to regain strength, keep her sodium levels up, and stay lucid. But once she started vomiting, she spiralled downwards. She got upstairs to bed, and I spent the night trying to wake her at the appropriate times to eat a little bit and take her pills - but she was already fading, so for each medication, I'd have to wake her multiple times before I was confident she could take a pill, and then I couldn't waste time explaining or we'd lose our window. It was exhausting, frustrating, and left me feeling both helpless and hopeless.

Finally, she returned from the bathroom around 3 a.m., confused and physically clumsy, and she tried to get back on the bed from my side, which did not have the stepstool. She practically fell a couple of times before I finally got her sort of shoved sideways, diagonally across the bed, but I had to work to keep her from falling off the bed as she fell into a deep sleep. I lightly dozed for hours, holding her in place. When I tried to wake her for more pills at 6 a.m., I realized how unresponsive she was, how stupid I'd been not to call for help earlier. I called 911 and they pretty quickly took her to the ER, where it was determined that her sodium level was too low.

When she had seizures in 2004, I didn't hesitate to call 911. But this summer, we'd grown so used to pain and distress that it became harder for me to recognize when we'd moved beyond what we were capable of dealing with. I know now that we should have gone to Urgent Care that first night after radiation, when we thought she had a bad migraine; we even discussed it but together we decided they wouldn't be able to help. (So many people had failed to help her with her neck pain and nausea the previous two months.) We probably should have returned to the hospital the night of July 28, when the vomiting was out of control. But in the moment, when all of life has already turned upside down, it's hard to know where the lines are.

In the ER., Sandy slowly regained lucidity and became aware of who and where she was. She faded in and out that day, one time alert enough to know that she wanted to call to Laura - but then completely confused and goofy on the phone call. She'd started to fade again later that evening until we began spooning broth into her mouth, and then suddenly she was talking intelligently about the presidential candidates.

That day, I lost her and got her back, just as I'd been doing since June 15. Even in the last stages of dying, after she stopped eating and drinking, she came back to us for another 36 hours (though often she was talking to hallucinations).

As desperate as I felt when I'd lose her, I came to know that she'd return, that I'd always get her back. The last time I lost her was on July 19. I'm still waiting.

Our home, our commitment

Every month, I'd pay the mortgage and then tell Sandy how much we still owed on the principal of the loan. She'd whoop and holler, especially when it dropped low enough that we could envision actually having it paid off.

Sexy asbestos suit, eh? Yes,she zipped it up
before we scraped the ceiling!

It became even more important to Sandy when she had to quit working and depend on disability payments last year. We reworked our finances, figured out how to make it work, and I wasn't all that concerned. But Sandy was obsessed by the idea that she could never increase her income - that even if she lived to retirement age, she'd still be receiving the same disability payments. She looked for small income opportunities. For example, she participated in a few focus groups for $50 Amazon gift certificates. She talked about selling some of her books. She was looking forward to moving to Medicare, which goes into effect after two years on disability. But she really focused on the mortgage. As soon as we'd paid it off, we'd have a little more money left in the checking account each month and be able to make home repairs or have a weekend away more often.

Our last mortgage payment was scheduled for this coming March. I thought briefly about paying off the mortgage while she was in hospice care, but I didn't want to leave her for very long. Now that I know I could have handled it with a phone call, I wish I had. I wished I'd been able to tell her that it was taken care of, been able to celebrate with her, at any level, while she was still conscious.

I paid it off today. She wasn't alive to see it, but it was important to me to make that final payment while her name is still on the title of the house that was her home. Together, we transformed many parts of the house and yard over the years to make it our own

I'm going to be closing out her estate next week, and removing her name from the title of the house. I know that will be painful. It's still her home. Our home. But leaving her name on the title would make selling the house complicated in the future, whether I'm selling it or my heirs are.

People have told me it's just a piece of paper, but it was an important piece of paper to both of us. It was a symbol of our commitment to each other at a time that we had no legal recognition. We were asked several times if we were going to have a commitment ceremony, and we said then that the mortgage-signing had been our ceremony.

So the house is paid off now. It's ours, not the credit union's. And next week, it'll legally become mine alone.

These past three and a half months, everything is wrong - even the things that were supposed to be a cause for celebration.

The first hundred days

Yesterday was the hundredth day I've been without Sandy. We look to the first hundred days of a presidency to set the tone for the term. Somehow I don't think that's applicable here.

I love the photos where I can see her almost accidentally -
it feels similar to her somewhat subtler presence now.

The first hundred days of widowhood are likely to be different from the second, third, and so on. Indeed, yesterday was different from the first day (shock, sleep deprivation, keening) or the thirtieth day (disbelief, fantasy, and yes, keening).

The physical pain is less constant. I find myself laughing more. I can concentrate on my work, and I'm getting a fair amount done around the house each day. Initially, I'd spend hours sifting through her papers or wandering through boxes that never made it out of the storage room when she moved in. Now I'm less likely to look up and realize three hours have passed unnoticed. But I'm more likely to be surprised by the suddenness of my emotion. I'll actually notice that I'm feeling good for a moment, and marvel at that, and a few minutes later, I'm sobbing.

After about a week of not feeling her presence, she's been around again the past couple of days. I keep trying to coax her to return. I know she's tired of my mantra: "Come back, come back, come back." If it were her choice—if she could opt to return in a fresh, healthy, energetic body—I'm pretty sure she still would.

A tale of two biopsies

My mother had her first breast biopsy when I was in high school. As I drove her to the hospital that morning, I asked if she was nervous. "I didn't think so," she said. "But then I had this dream. . ."

In her dream, she was in a waiting room with a bunch of other people. The nurse came in and said, "Okay. Everyone with an A operation, come on back." Mom stood up in her dream and said, "That's me. I'm here for an autopsy." Then she said she realized that she was there for a B operation instead - a biopsy.

We learned a couple of things from this dream: She was scared that this lump in her breast might lead to death. And she was a librarian. (Of course, we already knew that last bit.)

The biopsy proved that the lump was benign. Mom had several more biopsies over the years, and they were always benign. After a while, she stopped even telling us when she was having one, because they were no longer a big deal to her.

Fast-forward a bit. In June 2006, Sandy found a lump in her underarm and we agreed she should have a doctor look at it. But we didn't talk about it all that much. We were focussed on the cat crises (Pico had a life-threatening pyothorax - a chest infection - and Grumpus was missing for an entire week), Pride (I was deeply involved with Equal Rights Washington and we were both working shifts at Pride festivities and walking in the parade), Sandy's job search, Sandy starting grad school, and several other things. I was so unconcerned that I don't even remember her having a mammogram, though I know she did.

Sandy ran the North Olympic Discovery
half-marathon a few weeks before her biopsy

They'd found the lump in her armpit and two in her left breast. She went in for a biopsy and came home angry. Because there were multiple lumps, they took samples from several locations, and they'd somehow failed to anesthetize one of the areas. She was pissed off and in pain, icing that area for a few days. The drama was in the pain of the biopsy, not the wait for results. Kind of amazing, when I look back at it now.

With the 4th of July holiday, there was a delay in learning what they'd found. I should have known that meeting with a surgeon was a bad sign, but I didn't know how these things were done. So as we walked to the appointment on the morning of July 5, I was a little anxious, but I expected to receive good news. Both cats had returned home and were recovering; Sandy was set to start a new job that afternoon. The part of me that is way too superstitious believed we were on a lucky streak.

I was very wrong. Sandy was unfazed by the news; she said later that she'd assumed it would be cancer. I was in shock; she'd never told me her assumption, and I had long since internalized the belief that biopsies are always benign.

We asked a lot of questions and gathered the information we'd need for making decisions about surgery. Then she went off to start her job, and I went home to scream and cry.

Throughout the initial cancer treatment and the metastatic disease (and the period in between when I feared recurrence), I was so afraid of mortality, and she was always focused on the inconvenience. When we first heard the phone message from the oncologist last year, saying there were areas of concern on her chest X-ray, I turned to her and said, "Oh my god, I could lose you!" She said with a sigh, "Oh damn, they'll probably want to do a biopsy or something."

My fear, as it turns out, was well-founded. But thinking about her knack for understatement still makes me smile.

Metastatic visibility

I met some amazing women living with metastatic disease this weekend. Like Sandy, they quickly became aware that metastatic breast cancer is a completely different experience than stage I or II. But only metastatic women and those closest to them seem to understand that.

When we first learned of Sandy's metastases, I went searching for resources. Overwhelmingly, what I found in the media, in widely available books, and in literature from the top breast cancer charities was discussion of breast cancer as if the greatest harms it caused were the loss of a breast, the loss of hair, some nausea during a short-term treatment. People laud survivors of the disease, emphasizing women who have lived one, three, five, fifteen, or thirty years past diagnosis, as if their survival exhibits progress -- or is due to their personal strength and resilience. We want to see success stories. We want pink ribbons and fluffy bunnies.

Here's the hard, cold truth: what makes breast cancer truly scary is that it kills women (and some men). The lump in a breast is not itself deadly. It's the spread of breast cancer into organs whose functions we require -  lungs, liver, brain - that leads to death. Whether a specific person's cancer will lead to death is a crap shoot, luck of the draw.

We know a little about the likelihood of recurrence based on the aggressiveness of the initial tumor, but even then, we do not know what causes some cancers to metastasize and some to hang out harmlessly. So we treat everyone who has any form of breast cancer, resulting in overtreatment -- and the mortality rate has not gone down.

I keep harping on this because we need to change the way we think and talk about breast cancer. We're putting our collective energy into 3-day walkathons, mammogram promotion, and pink-ribbon projects -- and those are not saving any lives. We need to put that energy into demanding resources for well-thought-out research that leads to successful, meaningful clinical applications. We need to channel that energy into political pressure to make the eradication of breast cancer a national priority. And those who have a scientific background need to actively challenge the research assumptions, help develop the appropriate research questions, and get some answers.

A strong (and somewhat silly) woman in her own right

Sandy was adamant that I not allow anyone to write about her that she had "lost a courageous battle" against cancer. Having cancer did not make her courageous. It made her scared. And yes, she was willing to do some frightening and painful things in order to live. But she didn't want to glorify the cancer experience. It was not an experience she welcomed or embraced, and it was not what she wanted to be remembered for. She didn't want "cancer patient" to become her identity. While "caregiver" became central to mine, she was a bread baker, hiker, woodworker, vidder, writer, political activist, cynic, cyclist, friend, partner, reader, and more. She didn't give in to the cancer, but it still killed her. That's what metastatic disease does. The majority of women with metastatic disease, no matter how brave, no matter how strong, no matter how determined or how long their bucket list, will die within a few years of diagnosis. That's why this is an urgent issue.

When you see a story on breast cancer, note who it talks about. Is the focus on women who've survived stage 1 or 2 cancers, or is it on women living with metastatic disease? Are fundraising efforts going to help more women get routine mammograms (which don't save lives) or to fund critical research (which might)? Is an "awareness" campaign telling women to get screened, or is it promoting the understanding that we urgently need to make eradicating breast cancer a national priority?

Everyone who participates in an event or buys a pink-ribbon postage stamp wants to help. Let's put all that goodwill to effective use. Please help change the conversation to one that demands real action!

Maybe we can clone her? I have her hairbrush. . .

Desperately seeking 51-year-old bisexual Leo. Should be into media fandom, gardening, cycling, bread-baking, and me. Must be passionate about progressive politics, read while you walk, and sing as you approach the house. Please love blue flowers, and be able to overcome cynicism to take political action. Afraid of being without something to read? Addicted to sudoku? Exhibit delightful word choice? Willing to relocate to the realm of the living? Let's spend another 15 years together!

Over the years, Sandy frequently quoted a study that found that people who'd been happily married were more likely to remarry after their partners died. On the other hand, more than once she said that I could never leave her because then she'd have to date - and that would just be cruel.

Dec 25, 1995, with Pounce at John & Nicole's

I miss Sandy terribly. I miss everything about her that made her who she was, even the parts of herself that she hated or that I found frustrating. I also miss having an ever-present companion and confidante, someone to share the burdens of the house and cat care and the many random decisions and problems of life -- so I can understand the appeal widows find in remarrying.

I know it's early; it's only been three months. But when I recognize the desire to be in a relationship, it's Sandy I want. Only Sandy. Always Sandy. It's possible that I'll feel as strong a connection with someone else someday, but right now, my image of that connection always has Sandy's face, voice, smile, and essence.

Project LEAD workshop is over

So now I need to figure out what role I can play in helping to meet the deadline of January 1, 2020 for the eradication of breast cancer. Many advocates participate in reviewing studies to help determine which ones get funding through the Department of Defense breast cancer allocations. Some are meeting with scientists, researchers, and others to formulate the questions and craft the strategies that will change the way we approach breast cancer. Some write articles or summaries of research. Some lobby legislators for policies that help provide patients with better quality of care and help move the conversation forward. There are many ways to make a difference.

I'm going to rest for a few days before making any huge commitments, but I think my initial steps should be simply to pass on the information I've learned to people in my circles. I can do that here, and through Facebook, and through individual email and conversation. But I'm thinking a house party might be the most efficient way to really help show what the deadline is about, how we need to change the conversation, and what we can all do. Expect invitations in a few months!

Meanwhile, there are a few key points I'd like to share, and a couple of action items:

• Unfortunately, routine mammography screening does not save lives. We need something better; we deserve something better. For now, though, unless you're high risk, there's not much benefit to routine mammograms from 40 to 49 or once you're over 75. From 50 to 74, there may be some benefit. Personally, I'm not planning to have another one until I'm 50 unless I notice something suspicious.

So who's high risk? Someone who's already had breast cancer, of course, and anyone who's positive for either BRCA mutation. Also, someone with first-degree relatives with breast cancer, especially if they occurred at a young age. (So Sandy's sisters, for example, are considered high-risk.)

• The reason routine mammography screening does not save lives is because early detection doesn't save lives. We've all heard (and maybe said), "at least they caught it early," and intuitively thought that would make a difference. But the data shows, depressingly, that early detection has no effect on survival. What matters is the grade, phenotype, and histology of the tumor - whether it's likely to go rogue or not. 

When I look back at Sandy's initial pathology report, it's clear that the cancer was almost certain to recur, based on the grade and the Ki-67 value and a few other things. We could have hoped for a local recurrence (in her breast), but it didn't come back there - it hopped straight to lymph glands in other parts of her body, her adrenal gland, lungs, bones, and brain. The initial tumor was aggressive, and the chemo "tamed" it for a couple of years, but it followed the course the initial pathology report would have predicted. Finding it earlier wouldn't have made a difference; finding the metastases earlier probably wouldn't have made a difference.

• Most women overestimate their risk of developing breast cancer. The 1-in-8 statistic is a lifetime statistic, not your chances each year or each decade. Approximately 230,000 women in the U.S. are diagnosed with invasive breast cancer each year, and about 57,000 women are diagnosed with in situ breast cancer. That's 287,000 too many women having breast cancer each year, but the individual risk isn't as high as a lot of people think it is.

• Breakthroughs are possible. Herceptin provides an amazing story, as it changed the nature of treatment for women with Her2+ breast cancer -- it actually cut the rate of recurrence for those women by half. It has saved lives. One of the people who developed Herceptin has said that it became available to patients five years earlier than it would have because of National Breast Cancer Coalition advocates and the work NBCC did to push for accelerated FDA review. Five years = many lives saved, and I'm grateful to NBCC for that.

You can learn more about all of this stuff at the NBCC site KnowBreastCancer.org. Find out about the controversies and what the science shows us (and where the science just isn't there yet).


Okay, here's the action part - or, rather, two parts:

• Contact your representative and ask her or him to cosponsor the Accelerating the End of Breast Cancer Act, HR 3067, which has just been introduced in the House. The bill will establish a commission to focus on identifying methods to prevent breast cancer metastasis, and on identifying strategies for the primary prevention of breast cancer. 

Equality Day in Olympia 2006. You, too, can be political -
and I'm not even asking you to go to Olympia or D.C.
Just make a phone call, sign a petition - easy, right?

Legislative policy tip: You can track a federal bill and its cosponsors at Thomas.gov. Search for the bill by name or number, and then click to see the list of cosponsors. You can also see the text of the bill and track it as it moves through committees, etc.

• Sign the petition urging President Obama to sign on to support the 2020 deadline. You can sign the petition here.

Project LEAD: first impressions

The first day of the Project LEAD workshop was as exhausting as I thought it might be. The workshop is put on by the National Breast Cancer Coalition, and it's an intensive weekend of education around the science of breast cancer, designed to create informed, articulate, prepared advocates. I've been impressed with the NBCC for a while now. Their model of educating advocates has gained the organization tremendous respect in the political and scientific communities, and NBCC advocates are often at the table to discuss research priorities and study design.

So today there were lectures on the basic science of cells and cancer, metastasis, and epidemiology. I knew much of the information, having given myself a crash course last year when I started diving into the studies following Sandy's diagnosis. But it was very helpful to have the information presented in a more organized, comprehensive, and accessible way. And there were study groups! With a smaller group of people, we discussed questions related to the lectures and the broader discussion. They were well-thought-out questions that required more than regurgitation and that stimulated great conversations.

So far, so good. But it was a very hard day. I don't spend more than a few hours at a time with other people right now, always happy to run back home and be alone (sometimes with Sandy's presence, sometimes just with the cats) and do my sobbing and decompressing away from other eyes. This was eight and a half hours of being constantly "on." Not that I was insincere, or that I didn't cry, or that this wasn't quite possibly the world's second most sympathetic group (the most sympathetic group would be a group that knew Sandy and knew firsthand what a loss her death has been). So there's a certain level of exhaustion in the day's setup, regardless.

But it was also hard because the facts are grim. Really grim. Cancer is unpredictable, and we know very little about how to stop it. There are so many natural defenses in our body that the odds of developing cancer from an initial basic-science viewpoint seem really slim. Yet it seems to be everywhere, and once it takes hold, it's a crafty sucker.

So much energy, time, and money have gone into telling women to get mammograms. But the data shows that early detection has no effect on mortality. The charts are striking. Since mammography became common, the detection of early-stage breast cancers has climbed. You'd think, then, that the mortality rate would go down. But it's flat. We simply don't know much. We do have data that shows that the five-year survival rate is dramatically higher for local or regional cancer than for distant (metastasized) cancer. So I thought that while super-early detection wasn't useful, the stage at detection matters. But we don't even know that that's true. It's very possible (and increasingly likely) that most of those early-stage cancers would never have metastasized. We don't know enough about what triggers metastasis to know! It's terribly frustrating.

I was a little afraid, going in, that I'd learn that there was something we could have done differently if only I'd known more. That if I'd attended this same workshop in January, when they held it in Tampa, we could have prevented the cancer from spreading to Sandy's central nervous system. I no longer fear that I'm going to find out I missed something. Instead, I fear I'm going to feel helpless and hopeless. I know that they've done a lot of these workshops, and they'll ensure that I'm left on a high-energy note, even if that energy is pure anger at the delay in real progress. So I probably will come away empowered when this is over. But at the moment, I feel like we were doomed all along.

One more thing I found interesting: Out of 45 participants, I'm the only who is a primary caregiver or spouse. I'm also the only one who was motivated by someone who recently died, though several people have lost mothers or sisters or friends years ago. But probably 25 of the participants are cancer survivors, several of them living with metastatic disease, and others dealing with multiple recurrences. The rest are largely community healthcare professionals.

I expected there to be more people who were there because they wanted someone else to live. I wonder if other cancer advocacy programs are so heavily tilted towards people who actually have the disease rather than those who love them, or if the preponderance of the participants having breast cancer has to do with most of them being het women with male spouses. There are no men in the group. I know it's empowering to advocate for yourself, but it also makes me angry that these women don't have someone else making this a priority with them - especially the women living with Stage IV. If I found today exhausting, how tired must they be? We read early on that a cancer patient needs an attitude and an advocate. Sandy and I agreed that she'd develop the attitude and I'd be the advocate. No one should have to do both.

And now, a cheery photo to make me feel better after all this glumness. This was Sandy modeling a sweatshirt Laura sent her last June.

Moments of pain and happiness

I haven't felt Sandy's presence much the past few days. I miss her more acutely when I don't feel her here. The word never echoes through my brain. Never going to see her again, never going to hug her, kiss her, argue with her, comfort her, tease her. Never going to feel her body against mine in bed; never going to hear her say, "Yum," as she spoons around me. Never going to eat bread she baked; never going to call her on the intercom and tell her to come up to bed already.

No  matter how much I read or how many people I talk to or how much I theorize, I don't understand mortality. How a personality, a vital being, can be here and then not here. It's always been hard for me to understand. I suppose that puts me in good company with most of humanity. Mortality is scary. It raises questions about the meaning of life - why bother if, no matter what we do, we'll eventually vanish?

For decades, I've found comfort in the idea that energy cannot be created or destroyed, and that what makes us us is our energy. That when we die, we don't disappear, but transform, with an individual's energy dissipating and joining with other energies. It's a beautiful idea in the abstract. But when it's Sandy's energy we're talking about, I want it here, in her body, but healthy this time. I want her to have another chance - not because I think she needs or wants it, but because I need her here.

When I see a photo of her or flash on a memory, I'm back in the moment of the conversation or the event, and she's real, she's alive to me. And then my brain nearly shatters again when I realize that she's gone. But she was just here, in my thoughts and memories. There is no path there, just here/not here. This must be why it's so helpful to tell the story of her death, again and again, relating our tale, providing the segue, putting it into context a little more, so that I can integrate it into my life story little by little.

I was out in the garden yesterday. It was a wonderful, blustery autumn afternoon. Warm enough that I was able to wear just a long-sleeved T-shirt, but cool enough that the air felt fresh. I put away the garden hoses for the winter, bundled up the faucet, harvested the last of the rhubarb, removed the last tomato plants from their pots, and did other autumn-y things. On a whim, I let the cats join me outside, and they came and went, checking in fairly regularly, and generally being goofy. I felt good for an hour or so. It wasn't the good I've felt sometimes when I feel Sandy strongly here -- or when I somehow manage to forget that she died. She wasn't apparently with me, and I never forgot that she died. I just wasn't despairing. I was enjoying the day just as I would have enjoyed it with Sandy here, just as she would have enjoyed it. I enjoyed the inherent pleasure of wind and kitties and earth and accomplishment.

Later, the pain returned. This is not a linear process. And I'm not sure I can feel good long-term with all those nevers haunting me. But it is interesting to step outside myself and watch my own reactions, trying not to judge (it's not wrong to be in pain; it's not wrong to feel good). These are lessons I never wanted to learn, experiences I never wanted to have. But they're mine, all the same.

Hope without denial

We both thought we could beat the cancer. I thought we'd win because I'd set my mind to it, and damn it, we could shape our future. She thought we'd manage because she believed strongly in science, and she recognized that she had access to numerous resources that many of the women in the statistics didn't have.

In 2007, we went to Vancouver to celebrate the end of chemo.
Her hair was just beginning to grow back in.

We weren't blind in our hope, though. We watched for clinical evidence of improvement or setback. And I read all the studies, did all the research, tried to understand what we could expect and how to measure success.

At the time of diagnosis, things were remarkably grim. She had metastases in her adrenal gland, several lymph glands in different parts of her body, lungs, femur, base of her spine, and her brain. The news just kept getting worse for a couple of weeks. She had migraines from the adrenal tumor, couldn't breathe without supplementary oxygen, and had horrific back pain that kept her on narcotics around the clock. The initial treatment - radiation to her leg and back - not only fatigued her but left her severely anemic and damaged her bowels to the point that she lived pretty much on applesauce for a couple of weeks. She was miserable. As she put it then, "If this is what the rest of my days will be like, I don't need many more days."

But we listened when all the docs said she'd feel better after starting chemo. We assured ourselves that this was not the "new normal" - that we'd get to a new normal that gave her enough energy and comfort to do the things she wanted to do. And we did.

Her response to chemo was immediate and dramatic. Our rollercoaster started on May 6, and by July 4, she was off oxygen, off the narcotics, and having no cancer symptoms. She became less anemic with each passing month. By January, her blood counts were normal, and she exclaimed that she could give blood (and I reminded her that people didn't really want blood with cancer and chemo in it, thank you very much). Her tumor marker levels had gone from greater than 3000 to the 70s. (Normal is about 25.) She had chemo weekly for months and months before the fatigue became difficult and the Avastin side effects of nosebleeds became unbearable.

Ours wasn't a blind hope. We weren't in denial. We talked about cancer and its progression. She made plenty of comments about memorial services; we talked about death with dignity; we marked up our wills to revise them. We tried to be hopefully pragmatic. Or pragmatically hopeful.

The first bad news we'd had since June came when her tumor marker levels bumped up just a wee bit in March. But that wasn't unexpected. Typically with metastatic cancer, you stay on one chemo until the cancer becomes resistant to it, and then you move to another. We knew we had a long series of drugs left to try, and ten months on the first-line therapy was better than average. She'd been finding the Avastin side effects and the fatigue much more challenging, so taking a short chemo break sounded like a great idea.

The scans at the end of April were encouraging. No tumors in her bones, and all the gland tumors were smaller. The nodules in her lungs were a hair bigger than in the last scan, but still much smaller than they'd been a year before. The only cause for concern was one additional small tumor in her brain, and they recommended brain radiation so that we wouldn't have to worry about further brain tumors.

Our major concern was about long-term effects of brain radiation, personality changes or memory loss five years down the road. While the docs didn't think long-term effects were an issue (they didn't expect her to live another five years, it was clear to us), all of them thought we were on track with the plan: brain radiation, recover for a few weeks, and then move to a new systemic chemo. A week before everything changed for us, her radiation oncologist told her this was a marathon, not a sprint, and she didn't need to be in a hurry to get back on chemo.

I probably sound defensive. A few times in the past three months, well-meaning people have said things like, "even when death is expected, it's hard." And yes, in the days leading up to her death, we knew it was coming. But five weeks before that, we were certain she'd make it through 2011. This wasn't supposed to happen.

Her cancer was surprisingly brutal, aggressive, and stealthy. It didn't play by any of the rules, didn't follow the usual patterns. It jumped the tracks and went for the central nervous system, something we didn't think possible and the docs didn't suspect until we were already in the hospital.

If she had had a more typical breast cancer, even a more typical triple-negative breast cancer, she'd be here right now and this blog wouldn't exist. We did everything right, pursued every therapeutic avenue from forest bathing to Reiki to chemo to nutritional supplements. And we were largely successful for many months, until the cancer did an end-run around us and attacked an area we didn't know to protect (and I still haven't seen much on how to protect it). Only 2% of breast cancers ever go to the central nervous system; it's not in any of the research I'd found.

It's been three months now, and no matter how many times I've gone back over the past fifteen months (indeed, the past five years) in my head, I can't find the answer, can't figure out what we might have changed to keep her here. Certainly, the trauma from getting her finger caught in the blade of the stick blender in February didn't help - I suspect that challenge to her immune system is what gave the cancer the opening it was looking for. But life is full of short-term challenges to the immune system, so I don't know that we could have prevented all such occurrences without putting her in an unwanted bubble.

Ultimately, I feel betrayed by medical science, by what we know about breast cancer. My hope was not baseless, but I am left feeling like a sucker for underestimating the craftiness of this disease. We need to know more. We need to know what causes breast cancer, and therefore learn how to prevent it. We need to know what causes metastasis, and how to curb the spread. And we need to develop effective, benign treatments that kill the cancer rather than camouflaging its attack.

I'm attending a Project LEAD workshop with the National Breast Cancer Coalition this weekend to help in the efforts to do all three of those things. They've set a deadline of January 1, 2020 to eradicate breast cancer. I'm hoping (there's that word again) that the efforts of people like me can make that victory happen even sooner. Every day, women are dying. Every day, people like me are left with pain and despair. There's nothing about it that is okay. I only wish the deadline had been January 1, 2010, and that Sandy could have been among those who benefited.

Millie

Millie was the elderly woman who took care of feral cats in our neighborhood. She wore a trenchcoat even on hot summer days, and she often had a face mask on, though I knew of no reason she'd be particularly susceptible to germs. Her body was old, but her mental and social development appeared to have stopped somewhere in the tween years. She loved to talk about politics, the neighbors, and random other evildoers - but there was no content to her rants, just vitriolic indignation at how They are screwing everything up.

By all rights, Millie should have been dead long ago. She'd wander the streets at 1 or 2 a.m., yelling at miscreants to go home. She popped up everywhere, always on guard, always protecting her territory, which was loosely defined as anywhere she wandered.

She frequently came by to ask if we'd seen a particular cat recently (they often hung out in our back yard). We knew it was Millie at the door because she'd press the doorbell multiple times. Sandy always told her, as if talking to a 6-year-old, "Millie, honey, you only need to press it once. It's just annoying when you ring it multiple times." It never stuck. There seemed to be no way for Millie to take in new information; she could only spit out one of her tapes.

Seems pretty harsh, what I'm saying. Millie was not a delightful person. Yet she was always tickled to see me when we'd meet on the street a block or two away, as if it were the most exciting coincidence that we'd both be in our own neighborhood. And both Sandy and I felt our hearts soften toward Millie six years ago, after she brought us our beautiful baby boys.

We'd been capturing ferals and having them neutered and spayed, working hard to find homes for them where they'd be safe but still have some freedom. As more construction happened on our block, it was clear the ferals would be losing their habitat, and we wanted to be responsible people and stop the feral kitten cycle. Often, I didn't find out about a new batch of kittens until they were already six months old, too old to easily socialize. I told Millie in early 2005 that she should let me know as soon as she saw kittens; I told her to bring them to me and I'd make sure they were cared for. And then I forgot I'd told her that.

Sandy with her babies, the day after they arrived.

We were well past the peak kitten season on August 27, 2005. Roo and Prudence had both died, so Longfellow was our only cat. He was restless that morning, meowing at our feet in the kitchen, and Sandy looked down and said, "Longfellow, would you like a kitten?" Careful what you wish for!

About eight hours later, the doorbell rang, and Millie handed me a cardboard box about half the size of a shoebox. Three little blue-eyed bundles of fur were tucked inside it. Well, actually, when I got the box inside and looked at it properly, I could see that one of them was trying to crawl out of the box (Belly); one was walking around in circles (Pico); and one appeared to be dead, slumped in the corner (Nada). Sandy was at a friend's house with a bunch of people at their monthly bash; I called her and told her we had kittens. "WHAT did you do?" she asked, appalled. "No, it wasn't me! Millie dropped them off." She came home early, and almost immediately had three kittens on her chest.

Of course, the good home we found for them was our own. We tried to give Nada and Pico away; there were some very nice people who wanted to take them. But I couldn't do it. I couldn't let them go, and after months of saying it would be insane to have four full-grown cats in the house, Sandy agreed to keep them. Neither of us ever regretted keeping all three.

Millie died on August 18 this year, a month after Sandy died. She was in her mid-80's. We'd never have guessed that Millie would outlive Sandy. Or Pico, or Longfellow.

Sandy playing with baby Belly

I was intrigued to see that Millie's death brought up fond memories and let me reflect on the love that we've shared with these sweet felines. Death is so personal; one person's death can be felt in so many different ways, and one person can feel others' deaths in so many different ways. Interestingly, my own memories of Millie, who was such a minor character in my life, reassure me that Sandy will be remembered far and wide.

The physical aspects of grief

Right away, I noticed that the pain of grief was physical, often unbearable. And that grief is exhausting even when I'm not crying for hours; I'm just easily fatigued and rarely actually feel any genuine energy. It's hard to get enough breath into my lungs, hard to keep moving.

Okay, so grief presents physical challenges. What I didn't recognize at first was the reverse: when I am physically vulnerable, the despair is worse. When I realized I felt better after eating, I made sure to keep up a steady stream of calories. But when I had a cold, the grief was worse. When I'm tired after a bike ride, I can't imagine how I've continued living without Sandy. When I get fewer than nine hours of sleep at night, the next day is usually a harder one. When my muscles are sore, grief gets more intense. Not exercising is just as bad. Basically, I'm only barely managing to function through my grief, and I have no reserves.

Around the time we took this hike last year,
Sandy was phonebanking for the Suzan DelBene campaign.
She had more energy then than I have now.

Recognizing this, and respecting it, I'm learning to set limits even as I venture further out into the world again. Tonight, I was phonebanking for Prop 1, a car tab fee for the city of Seattle that will fund better transit, safer streets for peds and cyclists, and pothole repair. It's a good thing, and it's worth spending a few hours talking to strangers. I also knew it would be a little test of my energy levels. Started out doing pretty well, and I had some fun conversations. But as time went on, I started fumbling over words and it got harder to be friendly. I bailed 2 hours in, though we were scheduled to call for another 45 minutes. I took care of myself, and it felt good just to own my fatigue and head for home.

On the bus, I saw a woman get on who seemed very familiar. I played around with the sense I had of her in my head, and finally realized she was the nurse we had the last day Sandy was at the hospital. She was the one who trained Laura and me to use the strap to help keep Sandy steady as she walked; she taught Sandy how to pivot to the commode. I really liked her. But I didn't dare talk to her because I knew I would start sobbing. I'd been feeling the vulnerability, sensing the tears welling in my chest, before I even boarded the bus. I was tired; I was hungry . Ordinarily, I'd have boarded the bus looking forward to getting home and telling Sandy all about my calls, all about the other volunteers. Knowing that she wouldn't be physically present hit me hard.

Knowing what I now know about the physical influences, I've made myself some Annie's mac and cheese, I'll settle in for some of the TV shows Sandy and I watched, and I'll go ahead and have a good sob. And next week, when I phonebank about a different initiative, my energy will hold out just a few minutes longer, because this is a process. And like it or not, I'm starting to regain my equilibrium.

The metaphorical heart

In April, Sandy emailed me this:

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than the soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

i carry your heart with me

She stole the words from an e.e. cummings poem and rearranged them. The subject line of the email was "I rewrite this poem, a little bit." I loved it then (and I enjoyed the cummings original), but I've thought about it several times in the last couple of months. 

i carry your heart with me

Yesterday was pretty bearable; I almost felt good. And then I cracked late yesterday afternoon, became confused about reality. Then the horrors of this summer and the change in our lives (my life) came crashing in on me. Today, the pain's been in my chest again, a weight and an emptiness combined. Right where my heart is.

i carry your heart with me

I have ceased to see a difference between the physical world and the metaphorical, between the physical world and the metaphysical. It certainly feels like Sandy has taken part of my heart with her, just ripped it out of my chest, leaving a gaping wound. And the only time that wound doesn't hurt is when I feel her presence, carrying my heart with her, reuniting it with the rest of me.
 

(The actual poem, as written by e.e. cummings, is here:http://www.poetryfoundation.org/poem/179622)

The proof is in the cat

I was pretty sure Sandy was here earlier today, when I was reading in the living room. So I read interesting bits of my book out loud for her, sharing just as we always did when we read in the same room. But I always wonder how much of it is wishful thinking, and how much is truly her presence.

When I'd set the book down and was preparing to practice Tai Chi, Nada jumped up on my shoulder. He'd apparently decided it was love-and-suckle time. (That time often coincides with my trying to accomplish something else.) I asked Sandy to call him, please, over to the sofa. A few seconds later he looked toward the sofa, looked back at me, and continued with his kneading. I inferred that he'd heard her but didn't see anyone on the sofa, so decided not to go. I asked her to call him from the kitchen. A short while later (30 seconds? Did she walk there?), he strains his head around my neck to look toward the kitchen, and then jumps off me and ambles that way. So I concluded that she really was here.

It's a service we performed for each other a lot when we were in different rooms and needed to distract the felines from whatever they were pursuing: "Hey, would you please call your cat!" I've used the cats several times as test subjects, with varying degrees of success. I try not to overdo it to see whether she's in the house - both because I don't want to turn her into a party game, and because I think the cats are disappointed when they follow the call and there's no snuggling or treat awaiting them. But it does please me when it works!

Last times

I'm playing a morbid game, chasing memories as I go through each day, identifying the last time Sandy did various things. I can't help myself. For example, the last time:

On Whidbey Island, December 2010

• she drove - Saturday, June 11, to her therapist's office and back
• she was in our car - Tuesday, July 5, when we came home from the oncology visit where we learned that we were out of options
• we stayed in the cabin on Whidbey Island - last December, for our 15th anniversary
• she read a book - in the hospital in late June, she finished reading Bossypants by Tina Fey, and she described it as the perfect book for her short attention span and frequent pain
• we went out to dinner - Friday, June 3, my birthday, at Cafe Flora. A great evening, as Sandy wasn't having much pain and we were able to walk down Madison together, thoroughly enjoyed our meal, and then took the bus home up the hill (the last time we rode the bus together)
• she rode a bus - Wednesday, June 15, home from acupuncture before her first brain radiation appointment later that afternoon (and she'd have caught it in front of Bailey Boushay House, where she'd die just a little over a month later)
• she talked on the phone - three months ago today, on July 12, at Bailey Boushay, talking to her cousin Tim and his wife Shannon on her mom's cellphone
• she posted to livejournal - Saturday, July 2
• she ate - 2:30 a.m. Thursday, July 14
• she drank water - 6:30 a.m. Thursday, July 14, when the nurse complimented her on how easily she tossed back and swallowed her pills. A few hours later we couldn't rouse her to take more pills, and later that morning, she refused food and water.
• we biked together - May 29, to Broadway for the farmer's market
• she slept in our bedroom - the night of June 28
• she used her blue walking sticks - June 17, at Urgent Care, before being admitted to the hospital
• she got out of bed - very early in the morning on July 8
• we gardened together - Sunday, June 5
• she was at her computer in the TV room - June 28, and it was only for a few minutes
• we walked home together (from anywhere further than the car) - June 16, from Urgent Care, relieved that she hadn't had a stroke, and hoping the docs were right and that the severe pain and nausea had been a complicated migraine, and that the rest of radiation would go smoothly. She was in a good mood, tired but not in pain, optimistic. As we waited for the stoplight at Madison, she talked about how well-behaved her nausea over the past few weeks had been - that at least she vomited immediately rather than suffering for a while. I think of that walk every time I wait for that stoplight, several times a week.
• she took a photo - around June 22, taking pictures of the flowers she'd been sent in her hospital room, planning to post the pics to livejournal
• she took a breath - shortly before 1:20 a.m., July 19, more than twelve weeks ago now.

It's a neverending game. Once a life has ended, the last times don't change. I can find broader categories (the last time we traveled together) or narrower ones (the last time she ate a hamburger). I honestly don't know whether it's comforting or maddening, but there's an unavoidable accounting in my head. It's probably a combination of wanting to remember every moment of her life, wanting to reassure myself that she was here and took up space, and needing to integrate the reality that she won't be doing any of those things again.

Remembering and re-creating a separate identity

Sandy and I joked frequently about being codependent, or "co."  Codependency has a bad rap, and for good reasons. And, ultimately, I had become codependent in the last year of Sandy's life. I'd set everything else aside, assuming it would all still be there for me when she was well, when we'd gotten to the cure, when we both had health and energy. Or, in the worst-case scenario, when she'd died. 

When anyone asked me how I was doing in the latter half of 2010 or the first half of 2011, they heard how Sandy was doing. I didn't even realize that was how I answered the question until a friend pointed it out. She'd asked how I was, I told her the status of Sandy's health and symptoms and test results, and then she asked again, pointedly, "How are you doing?" I had no answer. I was Sandy's caregiver; my entire focus was to improve her health in the present and to conquer the cancer in the long term.

Since she died, I've felt my role has been primarily that of the caretaker of Sandy's memory. Even after her death, I've been putting her first, fearing that she's vulnerable. I want her to live on forever. Of course. But this morning I realized I'm beginning to be ready to start reclaiming my own identity, to disentangle the threads that bound us so tightly during her illness. I'm ready to start pursuing the things I'd be doing if she'd recovered fully, if I'd been able to turn my energy to tasks other than caregiving.

I started making a list of aspects of my identity, parts of me that may or may not have to do with Sandy, but that are mine to embrace moving forward: writer, reader, thinker, list-maker, cyclist, gardener, traveler, friend, confidante, counselor, activist, planner, cat-lover, neighbor, sister, daughter, in-law, procrastinator, volunteer, and, yes, widow. My relationship with Sandy remains a very important part of my identity, and I intend to keep it there for the rest of my life. How to integrate that with a life that I'm living - rather than just marking time - is the challenge. 

The authors of About Grief capture it well in paragraphs from different areas of the book:

Each griever must ask the question, “Who am I, now that you’re gone?” And the answer to that question often revises one’s self-narrative. Grief is a story you tell yourself. It’s a story of the death of someone you loved. It’s a story of the life of someone you loved. It’s a story of your life with them, and it’s a story of your life without them.

Going forward with your life will mean taking the fragments and gathering them into a version of loving the person that you can live with – and even someday come to enjoy. The alternative is that the loved one you lost will be nothing more for you than a tragedy, a bill for love, a shape of air, grief.

This is the challenge of grief: to take the mess of pieces you fell into upon your loved one's death and glue yourself together into something approaching "whole." Broken, yes. Reglued, yes. But  a version of whole nonetheless. This is the trajectory of grief, moving from someone's death back into living your life again. This is the arc every griever travels.

I know this isn't a linear process. I'm not done grieving, not done screaming and keening and clutching my chest in pain. But I'm encouraged to remember that I am a unique person, and that it's no betrayal to Sandy to be my full self. Indeed, it was my full self that she loved.

To sleep, perchance to dream

Inspired by a book on pain management, Sandy decided to start meditating last year. She wanted me to join her, and I definitely needed the centering it provided. So, most days, we'd stop what we were doing at some point in the afternoon, lie down on the bed, set the iPod alarm for however many minutes we'd decided we were ready for, and peacefully watch our breath, emptying our minds. By the time the harp sound interrupted us, one or both of us had usually fallen asleep. We'd briefly share our experience, relating how successful we'd been at achieving a meditative state, and how forgiving we'd been of our failure to do so. And then, often, she'd fall back asleep, after giving me instructions to wake her in twenty minutes or an hour. Sometimes I stayed and slept too.

Sandy napping with Prudence and Roo, roughly 2003

Traditionally, I've not napped, because I'd always wake disoriented and feeling as if I'd lost time. But napping with Sandy was luxurious, reassuring, and refreshing. We didn't sleep too long, and we'd get up together and shake our heads free of cobwebs, start making dinner, or wander out to the garden. I learned that sleep could provide relief from stress and pain, and that I didn't have to sacrifice the rest of the day just because I'd napped.

Several times in the past couple of months, I've crawled into bed in the middle of the day and let sleep carry me away from my agony. Grief is exhausting. And though I don't expect time to heal my wounds, I do think that, ultimately, my ability to integrate Sandy's death into my consciousness is going to have a lot to do with how many hours of sleep I've racked up.

I thought I was going to read this afternoon, but ended up snoozing for a couple of hours. Because we'd napped together so often over the past year, I expected Sandy to be there when I woke up. She wasn't. But I felt a little less lost than I had when I lay down, as if I'd managed to process just a little more of what is so unbearable when I'm awake.

We were supposed to be okay

I was supposed to save her. It was my job. Rationally, I know how unrealistic that is, but it's how we talked about it. More than once, Sandy started a sentence with, "When you save me. . .," or "If you're going to save me. . ."

At Ocean Shores, April 2011, when we
thought we were winning the fight.

Several times, when she heard about people dying of cancer or suffering complications in hospitals from falls or infections or the like, she'd say, "They didn't have Brie." She told me once that she was surprised to realize how strongly she held the assumption that no harm would come to her as long as I was there.

When I complained of fatigue, and of not getting much done, she'd say, "Hey, cut yourself some slack. It's a full-time job keeping me alive!"

Just as it was my job to "save" her, it was her job to want to live and to do the things we'd identified to help fight cancer, improve her hip, and keep despair at bay. Just as she had faith that no harm would come to her with me on the case, I believed that as long as she wanted to live, as long as she didn't give up, she'd make it.

When I'd confide my fear of losing her, she'd hold me tight and say in a matter-of-fact, reassuring tone, "I'm not going anywhere." And I believed her, truly believed that she could make that promise.

So what happened? How the hell did the cancer slip past my vigilant watch to get into her central nervous system and leave us with no treatment options? And how did it manage to kill her when she'd done everything right, when she wanted to live? How could we both have been so wrong?

Synchronicity

The universe seems to be talking to me, just as Sandy had a
few things to share with this beautiful snag at Arches.

Either everyone shares my current obsessions, or the universe is specifically throwing things my way. Since Sandy died, everywhere I turn, a character in a TV show, movie, play, or book is pondering the same questions I have about what comes after death and how it all works, or else a main character is a new widow, or (and these are my favorites) there's talk about how to come back from death.

Yes, of course, I've been seeking out resources on grief and I purposely rewatched Sixth Sense just to see the widow's reactions to living without her spouse. But I'm talking about the references that have been unintentional, and often profound.

It started with the first Leverage episode I watched after Sandy died (about three days later), as Parker asked pointed questions about how we know that the dead feel no pain and what comes after death. I'll spare you the long list of similar encounters I've had over the past two months, but just in the last few days, there have been several: the Dr. Who season finale with a surprise twist to the whole "the Doctor is killed" arc that shadowed the entire season; in Castle this week, a major plot point was the idea of freezing bodies so people might be brought back to life when technology advances; I began reading Dreadnought by Cherie Priest, and in the first three pages, the protagonist learns she's a widow.

Tonight, I joined friends for what seemed likely to be a melancholy comedy, a play about the Peanuts gang as high school students. Guess what two of the themes turned out to be? Yep: questions about the afterlife, and survivors' reactions to death. One character even said ( I paraphrase, unfortunately), "What if I fall in love, only to have my love die?" I don't know why all those other people were in the audience - they could simply have titled this play "This one's for Brie."

Putting the garden to bed

Somehow it's October. With the rains imminent, I'm trying to force myself to do the things that need to be done in the garden: removing the dead and dying foliage of both intentional and opportunistic plants, clearing out the vegetable beds, planting cover crops. It's a set of tasks I usually enjoy, and that almost always find me wistful. Especially as a vegetable gardener, this is when it's clear what did and didn't happen according to plan, and when I make resolutions for next year.

Sandy in the front yard in 1998, I think

I am more wistful than usual this year. My mental to-do list is frozen on June 15, when we weren't quite to summer yet and we still thought we'd have a fairly ambitious gardening year. Sandy never gardened again, and I've spent maybe six hours in the garden since then.

Our last real day of gardening together was June 5. Some things remain exactly as we left them that day, expecting to return to finish various tasks or start new ones.

The tomatoes I've been harvesting were started from seed back in March, planted out before our vacation in May, and I didn't get them staked until just after Sandy died. Because of the cold summer Seattle had, we didn't have any ripe tomatoes until the end of August, more than a month after Sandy was gone. When I planted those seeds, debating the varieties, and when we rebuilt the tomato bed, and when she helped me put them in the ground with their wall o' waters, neither of us had any idea that she wouldn't get to enjoy their fruit.

A few weeks after she died, I harvested the potatoes she planted in April. The cosmos she planted have been in bloom since August, as well; she never got to see them.

I never planted beans and squash, worked in cover crops, or weeded much of anything. About all I've had the energy to do is to harvest. Luckily, onions thrive on neglect, and the tomatoes are on auto-pilot.

Twenty years ago, one of the people I shared a house with had just lost his life partner to cancer. The room I rented was in what had been her house. I moved in in August, and I was surprised to notice tomatoes in the back yard in September. James told me that Meg, the woman who'd died, had planted them. I thought then that it was an amazing thing that a dying woman would plant tomatoes for someone else to enjoy. (It's Seattle; most people don't set their tomatoes out until late May, at least.) Now I know that she may have been expecting to harvest them herself. Just as Sandy expected to eat the potatoes and tomatoes, and to see the cosmos bloom. Cancer isn't predictable; everything can change so quickly.

It's an understatement to say that I dislike surprises. I always want to know what's coming next, and I want to have a plan. I can pivot when circumstances require, but curveballs are not welcome. And now, shaken and betrayed by the universe, I find I no longer trust plans. I'm not making my usual resolutions in the garden. I can't quite see how it will look next year, don't know what I'll plant, don't know what the universe will see fit to throw my way. All my assumptions are gone. I'm putting cover crops everywhere and I'll deal with it later. Just like everything else.

Taking on new tasks

In the thirteen years we'd lived together, Sandy and I had found some natural divisions of labor. As soon as she saw how I did laundry (i.e., that I didn't even bother to sort the clothes), she took over that job. When I noticed her bills sitting unopened for weeks, I took charge of our finances. Likewise, I handled simple electrical and plumbing tasks; she built things and baked bread. I made biscuits and cornbread; she made stew and pizza. It all worked very well. We appreciated each other and felt ownership of our own roles.

And then she died without leaving me a manual, or even a list of all that she'd been doing all that time. My first challenge was laundry. I'd used the front-load washer maybe twice since we bought it eight or nine years ago, and those times I'd been given specific instructions. So it was with trepidation that I did my first simple load of dark clothes. (In deference to Sandy, I sorted.) That went okay, but I held my breath when I washed a load of bike shorts. Somehow, Sandy made those expensive necessities last, but how? I'm a bright kid; I was able to make some good guesses, but I really wanted to know her method.

Yesterday, I was wandering through the pathetically neglected garden, now soggy from the returning rains. I've always been the vegetable gardener, and I knew I had a lot of work to do on those beds. But the flowers were Sandy's domain. Suddenly it occurred to me that Sandy wouldn't be taking care of her cutting garden anymore. I'd barely ever done anything in that bed except, well, cut flowers. I started ripping out tired brown crocosmia leaves and bunches of other dead foliage. It felt good. This is something I can do for Sandy; I can take care of her flowers, even if it means I need to broaden my areas of gardening expertise.

Luckily, Sandy compulsively took photos of all areas of both the front yard and the back yard each season, so that she could plan for the next year. I don't know how much she ever referred back to those photos, but I know that I will now. Knowing what's been there before, I can make more intelligent decisions about what stays, what goes, and what small changes might be appropriate.

She did leave me the recipe for my sandwich bread, along with the books she treasured in her baking adventures. The bread she made me was delicious, nourishing, and gave me the sense that I was taken care of. Once I get the garden figured out, maybe I'll be able to muster up the courage to try to re-create that goodness, too.