Time just keeps passing

The days march on, relentlessly. Though milestones related to Sandy's death are less frequent, it's a rare hour that I don't think about her, talk to her, or realize once again how bizarre it is that she's been dead for so many months.

An hour ago, I was spinning on the bike on the trainer in the living room, watching a video streaming on my laptop. I had trouble hearing it over the loud trainer, and remembered that Sandy frequently connected her laptop or iPod to the stereo, amplifying the sound. I fumbled around in the tangle of cords behind the stereo, looking for the one that would plug into my laptop. Frustrated at one point, I thought I'd just have to wait until she got home, and then remembered she can't walk me through such tasks anymore. A few minutes later, I wondered whether she'd removed the cord for some reason, and then realized I've used it since her death. Eventually, I figured it out, but only after a considerable amount of confusion — more about her not being here than about finding the cord itself.

I stared at bookcases in the bedroom this morning, recognizing that many things in the house remain untouched, unmoved, since Sandy died. I criticized myself for getting "stuck," for keeping things in place for sentimental reasons — and just as quickly decided the criticism wasn't valid: most of the things that haven't moved since Sandy died had been in the same place for the decade before her death. (How often do you rearrange your bookshelves, after all?)

I visited a dear friend in Portland for a couple of days this week, testing my ability to spend the night away from home. It wasn't as painful as I expected it to be. In fact, the hardest part was that I wanted to call Sandy to let her know my train had arrived safely, to tell her about a meal we ate, to check in. The last time I'd been in Portland was in June 2010, the weekend before Sandy started radiation. That weekend was my college reunion, full of activity, but I'd talked to Sandy several times on the phone and exchanged multiple emails with her during the 48 hours I was away. This time, I felt a pang every time I reached for the phone and realized she wouldn't be there to answer if I called.

I started knitting again in Portland, the first time since Sandy
died. I'd been making her a pair of gloves, and I didn't have
the heart to continue the project without her. But I'm nearly
done with them now, and I'll wear them, thinking of her.
Here she was several years ago, modeling the neck
warmer I knitted for her at her request.

Over all, though, the experience was encouraging. I think I should be able to visit family and friends or even have a weekend away by myself without suffering from a complete breakdown. That's good. I want Sandy and my memories of her to remain a strong presence in my life, but I don't want that life to be small or defined by fear.

A year ago I was dreading flipping the advent of 2012. I couldn't fathom entering a year that Sandy had never known, especially one that had been so much in our consciousness because of the presidential election. But that year is almost past now, a whole calendar without her. 2013 isn't quite as hard to imagine. We never talked about 2013; we'd stopped planning that far ahead. So at this point, I don't know that the year matters that much. A year without Sandy is a year without Sandy; we've come far enough that it's easier to let the days pile up on each other without cursing each one. Perhaps that in itself is a notable milestone.

Weddings and benefits

Since December 6, it's been difficult in Seattle to avoid images of happy same-sex couples displaying newly acquired marriage licenses or walking jubilantly down the courthouse steps after saying their vows. In many conversations I've had in a variety of settings and contexts, someone will casually mention that they were married this afternoon or can't attend a meeting Thursday evening because that's when they're getting married. All around me is an air of celebration.

I managed at first to focus on the political and legal aspects of the issue, distracting myself from the personal stories. When others brought them up, I changed the subject. The stories aren't foreign to me; I've been blessed to hear them during the years I've worked on this issue. They have moved me in the past, but those same stories leave me resentful now. And I don't like that about myself. I want to feel happy for those people. I worked for their rights as well as my own, and I value their relationships. However, right now, their exuberance is a reminder of my loss, and I'm jealous. Better just to avoid all of it as much as possible.

I felt the loss most acutely last Sunday, our seventeenth anniversary. Had Sandy lived, we almost certainly would have chosen to marry that day, even though it would have meant moving the ceremony inside due to cold, wet weather. I spent the day feeling sorry for myself, wallowing in regrets and wishing for what can never be.

A good night's sleep and a reassuring dream helped me remember how lucky I am to have loved and been loved by Sandy, how fortunate I am that she's still such a presence in my life, and how miraculous it is that our marriage will be retractively recognized years after her death. We won't have our wedding, but the marriage we already knew we had will be a matter of legal record. It's just a matter of time now, just a little over 18 months before that recognition occurs.

I've been looking forward to June 30, 2014, as the date that Sandy's deathbed wish will be fulfilled, but I saw the recognition as largely symbolic. It's coming too late for me to receive the benefits and consideration I should have received as a widow, after all, even if DOMA has fallen by then. The options I had for the IRA I inherited were much more limited than they would have been; I received no Social Security death benefit; over and over again, I had to report that I was making arrangements or settling matters as a "non-spouse." Those are insults that won't be washed away.

But it turns out that this legal recognition of our marriage may yet have some practical benefit that hadn't occurred to me. Assuming the third part of DOMA is ruled unconstitutional by the Supreme Court in 2013 or Congress eventually repeals it, I may yet be able to claim some benefits as Sandy's widow.

There are many married couples in this picture from the Sides family reunion
in July 2007, taken just a few weeks before we were able to register as
domestic partners. When our RDP is converted, our marriage will have
an effective date of July 25, 2007, and once DOMA disappears, it will
be treated equally to all those other marriages.

I'd thought my inability to claim her Social Security benefits inconsequential, as mine are higher than hers anyway. But then I read an article in a random financial newsletter this week. (I don't even subscribe to it; they just sent me a sample, and it'd been sitting on the coffee table. When I cleaned off the coffee table, I flipped through it.)

The article outlined all the ways a widow or widower might choose to claim benefits, depending on their own earnings and their spouse's earnings. It's just possible that it would make sense for me to claim Sandy's benefits at an earlier age (say, 62), when I'd be able to receive just a percentage of them, and then to hold off on claiming my own until I reach the age that provides the maximum benefit, at which point I'd switch. I'd read about this flexibility in the past, but never thought it would affect me - either because Sandy hadn't yet died when I read about it or because she'd died before our marriage was recognized.

But now I realize that, with our marriage a matter of legal record, effective four years before she died, if DOMA is no longer in place, there's no reason I wouldn't be able to claim the benefits just as any other widow does. I don't know whether it will make sense financially to do so, or even whether Social Security will work in the same way eighteen years from now. But I do know that it feels amazing to realize that the time is coming that our relationship will be seen in the same light as the marriages of our friends and family members. That whether I claim Sandy's benefits will depend on my financial situation, Social Security rules, whether I've remarried, and other things that affect everyone -- not the fact that Sandy and I were both women. That's huge. I don't even know if I can convey how huge that is. And that realization gave me my own little celebration. I'm so grateful that our relationship will soon be granted the equal status that Sandy craved for it. And that it's just possible she'll have the opportunity to take care of me once again, something I know would make her very happy. 

San Antonio Breast Cancer Symposium

The biggest event of the year for breast cancer researchers and advocates is the San Antonio Breast Cancer Symposium, which ended a week ago. The research that's presented there hasn't been published anywhere yet, and it's often many months before it makes it to mainstream news, if it ever does.

Two years ago, I pored over every abstract online, seeking hope for Sandy's cancer, which was so far responding well to treatment. I scribbled the names of promising drugs and information about studies and trials related to them. It was through an abstract that I first learned about the Army of Women (the Dr. Susan Love Foundation's project to find subjects for clinical trials related to breast cancer). And as I read about the San Antonio symposium, I saw several references to National Breast Cancer Coalition advocates interacting directly with some of the top researchers and medical personnel in the country; that's when I joined NBCC.

Two years later, I and most of the women I know are members of the Army of Women. (If you haven't signed up, do! You'll receive notice of trials, and if you qualify, you can help make a difference. They need those who've been diagnosed and treated for breast cancer, but also those who haven't.)

I'm an advocate with the National Breast Cancer Coalition now, and I know much more than I did two years ago. In large part, I know more due to NBCC training.

And I still find hope in the data released and discussed in San Antonio. Two years ago, I told Sandy she was the hot topic, as so much of the researchers were starting to focus on triple-negative breast cancer. That's even more true today, and they've learned a lot in two years, particularly related to the heterogeneity of triple-negative breast cancer. Some is aggressive; some isn't. It's defined by what it isn't (it isn't estrogen-receptor positive; it isn't progesterone-receptor positive; it isn't Her2 positive), which makes it difficult to provide targeted therapies. But the understanding of subsets is offering the opportunity for more effective treatment, a way to identify individual tumors by what they are, rather than by what they aren't.

Two years ago this weekend, on Whidbey Island, feeling
relatively optimistic on our 15th anniversary.

I don't read every abstract anymore. I'm not chasing down possible clinical trials for Sandy, and I'm no longer running into the other room, dripping statistics and drug names in an optimistic frenzy. (She finally said to me, "I don't need to know all the details. That's really your department. Just come in and say 'Hope! Hope! Hope!'")

You can find a good and encouraging description of the highlights of the triple-negative research presented at this year's symposium at http://curetoday.com/index.cfm/fuseaction/blog.showIndex/guest/2012/12/9/A-recap-of-triplenegative-breast-cancer-research-from-San-Antonio

A less encouraging, but more analytical summary of the symposium as a whole and of its notable research for all types of breast cancer is at http://blog.breastcancerdeadline2020.org/?p=472. The author of the post describes her frustration with what I think of as tweaking - playing around with doses and moving drugs from one group to another, often in search of a market rather than following some clear scientific theory. She's right when she says we need to pull scientists and the rest of the breast cancer research community into a common pursuit, which is exactly what the 2020 Breast Cancer Deadline is doing. So perhaps SABCS will be less frustrating and more exciting in future.

This year, the abstracts are available online only for those who attended the symposium, which is disappointing. But you can check out the program to see the names of papers presented at www.sabcs.org, and the abstracts may eventually be posted for the public. Abstracts from previous years are still available.

The is stage

It was a physical sensation, something shifting in my chest, a displacement of weight. Neither a lightening nor an additional burden, but the same weight, slipped into a different place. A physical manifestation of the realization that Sandy isn't coming back. That what I've known to be true since she died last year, I now know at a cellular level to be true.

It was an abrupt change, though not exactly sudden. (How could it be sudden when I've been straddling sanity and insanity for sixteen months?)

I don't know what happened, why I now find it possible to comprehend that we won't be getting our life back. It may have been the election, with the marriage victory here and still no Sandy. It could be the tincture my naturopath has me taking (nasty, grassy-tasting herbal stuff) to even out my perimenopause-challenged hormones. Or it could just have been time.

I have no doubt that Sandy has been very present in my life since her death. That part isn't insanity. And I'm confident that she'll continue to be with me, that someday we'll be together again on a different plane, that she is not lost to me.

Sandy, at Myrtle Edwards Park in May 2010, shortly after learning she had
metastatic breast cancer. She'd been told not to ride her bike because
of the tumor in her femur, so she and Christine went for a spin through
Myrtle Edwards Park before she put the bike away until her leg healed.

But now, on this plane, on this planet, in this lifetime, I still have some things to do. I have always believed that I am in the world to change the world, and that requires energy and intention and presence. It requires me to live in reality. And it requires me to pay attention to my own priorities and preferences.

I wondered at first whether this was a temporary shift. For so long I found comfort in fantasy -- knowing it was fantasy, but still allowing myself to believe that she really would reappear. So I've watched myself, observed the changes. I noticed that I've started referring to "my" house, "my" cats, and "my" garden; sometimes I consciously switch to "our," but it's an awkward decision, no longer my instinctive pronoun. I've started to notice what I want to do, where I want to travel, rather than trying to live Sandy's life for her in some way. I removed everything from the front of the fridge that didn't please me, the things that were there because Sandy liked them. And though each day still ends with my imploring Sandy to come back to me if there's any way she can, it's more of a reminder that I miss her than an expectation that she'll somehow have the ability to come back.

The universe -- or perhaps Sandy? -- is affirming the shift. Synchronicity strikes again. I read The Revised Fundamentals of Caregiving last week, a book that had been on hold for months. Near the end of the book, one of the characters tells another, who's grieving intensely a couple of years after a tragedy: "We're past the if stage. We're past the how stage and the why stage. We're in the is stage."

I'm in the is stage now. Past the hows and the whys and the buts and the completely baseless optimism. Sandy died. She's here in other ways, but she's not coming back physically. And I need to make the most of my time here, whether it's another day or fifty years.

Tonight, then, I watched this week's episode of a TV show I watch frequently and it focussed on the story of a man whose behavior was damaging others, all because of his own guilt and grief over a death three years ago. An intervention taught him that he can't change the past, but he can make the future. The same message I've heard from several directions the past couple of weeks.

I'm not done grieving. My want is palpable, and at times I still feel terribly, horribly alone. But I'm no longer waiting for Sandy to return. I've moved into a new, apparently lasting stage, living with what is instead of what I wish were.

Dying as transition

Sandy and I used to talk about dying suddenly, instantaneously, and simultaneously. We talked about a massive tree branch crushing our car on Mt. Rainier, a plane crash, a fatal traffic accident. The goal was to die without suffering, and to not leave one of us a widow.

As it happened, Sandy's death was relatively quick for a cancer death, but far from instantaneous. She suffered considerably in the weeks and months that preceded her death. And she left me behind. But the experience of the last several days of her life, when her pain was under control, have changed my thinking about preferred methods of death.

New to my collection, this photo was taken by a friend in 2002.
She just found the photos from that day and sent them to me. A
wonderful gift and the rare kind of surprise I welcome.

In the last few weeks of her life, and especially the last few days, Sandy let go of plans and worldly concerns, found resolution in relationships, and prepared to move on. She communicated with people that others couldn't see, and she apparently had some out-of-body experiences, loosening the ties between the physical and the metaphysical aspects of herself.

As she went through these transitions, those who love her were engaged in our own processes. We grieved, celebrated memories, and came to terms with the reality that she was dying. I say "we," but each of us responded differently, and I was the least successful in facing her death. I've read that this final period is a time for the dying person to release attachments to others, and in turn, for those left behind to separate. I wasn't prepared to do that, but I did benefit from the natural death process.

I've just read Final Gifts, a book written by a couple of hospice nurses in 1993. They realized that the dying often communicate in ways that the living misidentify as hallucinations or confusion, so they decided to share their insights. The book is full of individual stories, many of which illustrate experiences I recognized from Sandy's process: interactions with people who have died previously; speaking in metaphors; needing to have certain matters dealt with before they can die peacefully. Some of what the authors say is speculation, and I think they make some unwarranted assumptions about the impulsive efforts to walk that sometimes occur just before death — they seem to think dying people are actually trying to make the journey physically, but from the conversations I've had and other things I've read, it seems much more likely to me that, that close to death, the body "forgets" its disabilities and makes one last effort to live — but many of their conclusions ring true.

I'd absolutely recommend the book to anyone who is caring for someone with a terminal illness. I wish I'd read it before Sandy died. I've been remembering Sandy's outbursts and puzzling statements from those weeks in hospice, attempting to evaluate which truly were paranoia from the steroids (the accusation that I wasn't human; the fear that her food had been poisoned; the belief that her sister was an imposter) and which were real (her delight in interacting with people we couldn't see; her emphasis to me that I should be grateful for our 15+ years together; her description of having just been in our bedroom and seen the cats on the bed).

There are some events that I'm not sure how to categorize, though.When she relived the time she nearly drowned over and over again, was that really hallucination brought on by the gurgling moisture in her throat or was she trying to communicate that she was being pulled under before she'd done all that she needed to do? (That first demanding cry, more of an order, "Help me!" as she looked straight into my eyes, glaring and stern, still haunts me. My immediate impulse was that she was angry that I'd stopped trying to save her life, but once the nurse arrived, we realized she thought she was drowning.) When she said we could still Skype, was she referring to the visitation dreams we'd have — or was she, as I thought at the time, believing we were talking about her traveling to France? After she'd been a total ham with her family one evening, throwing pills around the room, she got very serious and said we needed to talk about what I'd said, that I was breaking up with her and needed to move on. At the time, I told her I'd never break up with her; I thought I was reassuring her when I said I'd always stay with her. Now I wonder if she was telling me that she needed to know I could move on after her death, that I'd be okay. I think my initial interpretations were probably correct, because she relaxed after I reassured her I wasn't leaving, just as she relaxed another time when I told her that, no, I wasn't planning to kill her. So those probably were the product of steroid-induced paranoia. But I desperately want to know that I gave her what she needed as she was dying.

I still support our death with dignity law, and I even wish Sandy could have gotten the pills she was entitled to and determined to have. But I'm glad she had the slower dying process, the ability to make the transition, to straddle both worlds and know that she had nothing to fear. When I think about my own death, I now hope that I have just enough time between the onset of illness and my final breath to make the same transition and gain the same confidence and comfort. I imagine it must be rather shocking for a spirit to go from life to death so suddenly, and I've never cared for surprises. I'd rather ease into it. I especially hope that the person I get to talk with so happily in my hospice room, the person no one else can see, is Sandy.