Changing the conversation

The main goals of the National Breast Cancer Coalition's Deadline 2020 project are to prevent primary breast cancer, so that people wouldn't develop it in the first place, and to prevent metastasis, saving the lives of those who have already had it, past or present.

The work to achieve those goals requires many dedicated players. Researchers need to do their thing, collaborating in new ways, exploring new avenues, and taking a higher-level view of the problem to be solved. Politicians need to recognize breast cancer eradication as a priority, using their power to influence the way resources (not just money) are allocated. Foundations and government entities need to embrace new models for funding and support as the scientists wade into new territory.

Sandy's oncology infusion nurses quickly became our friends
during her initial treatment and again when she had metastatic
cancer. But it would be great to have met them under different
circumstances, and they'd certainly welcome the opportunity
to successfully prevent metastasis.

But all of this is dependent on changing the conversation. As long as people think we're making significant progress, while the mortality rate remains nearly steady, we don't have the public pressure we need to make everything else happen. It's unfortunate that the focus on "awareness" has actually made people less aware of the facts.

That's why I was pleased to see the cover article in this week's New York Times Magazine, titled "Our Feel-Good War on Breast Cancer." I recommend reading it and spreading it around. You'll find it here: http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?smid=pl-share.

Peggy Orenstein did her homework well, and she describes the complexities of diagnosis, treatment, and survivorship eloquently. Though she didn't mention National Breast Cancer Coalition, she offered the same message NBCC has been working to get out for years now. It's encouraging to me to see it starting to take hold.

One of the particular challenges is communicating that breast cancer is still very deadly and we still know very little about how or why it behaves as it does while at the same time helping women understand that their personal risk is much lower than most women assume. Reassurance + urgency is a difficult equation.

Part of what makes it so tricky is that the pink-ribbon brigade has been delivering a message of reassurance and urgency of its own. They've led women to believe that every woman is at high risk for breast cancer but that we're making tremendous strides, and that somehow having a mammogram is protective. Not very helpful for making real progress to end the disease.

Orenstein's article is a great source of information for anyone wanting to converse knowledgably about the subject. Keep it handy to educate the next person you hear say that "early detection is the cure" or any of the other misleading statements people like to share. It's time we channel all that well-meaning energy into effective change. We may not be scientists, politicians, or foundations, but changing the conversation is within our power.

The bluest season in the garden

Tucked into the mailbox yesterday, on a scrap of notebook paper:  Thank you for creating such a beautiful garden! I love walking by - it's one of those small joys that make up a good day.

The note was written in pencil, with no signature, no contact information. Just an anonymous gesture of gratitude that lifted my spirits immeasurably.

The front yard was Sandy's territory. She fussed over it, taking pictures throughout the season so that she could fill in gaps the next year or otherwise think about the layout. I knew passersby loved our garden. In fact, one of the neighbors figured out that something was wrong with Sandy when the yard fell into disarray in the summer of 2011. I told him after she died that I didn't know how I was going to keep it going without her.

Then I realized last summer that the Japanese Maple, the centerpiece of the front yard and the only part of it that had really been my doing, had succombed to verticillium wilt and had to go. I thought I'd have to rethink the entire front yard, and that I'd necessarily erase Sandy's work. I was wrong.

A different time of year, clearly, with the dahlia blooming, and
it was more than a decade ago. But almost as soon as Sandy
started planting the front yard, passersby began to gush over it.

The Japanese Maple is gone now. I miss it. I've bought a ceanothus to go in the space it used to occupy, though, and I'm hopeful it will get enough sun there to be a beautiful source of blue flowers. Meanwhile, I've discovered that Sandy's garden continues to thrive. The hundreds of bulbs she planted sprout and bloom right on time, in wonderful succession, and many have naturalized. The perennials do their thing on cue, and the self-seeders have self-sown with abandon. Like the anonymous note-leaver, I love walking by the front garden. Sometimes, I just stand out on the porch and drink it in, especially right now, during it's bluest season.

The galanthus poked up first, and then the white forsythia bloomed radiantly as the daffodils took up their stations. Soon, crocuses appeared, and muscari bordered the garden and clumped in various spots within it. The Japanese snowbell trees started to leaf out, and the tulips peeked up. Chinodoxa and several other small blue flowers whose names I don't remember filled in the planting strip under one of the trees, and forget-me-nots clutter the area that had been under the Japanese Maple. The wood hyacinths have just come into full bloom, and the camassia are starting. The bluebeard is tentatively developing its new leaves. Really, aside from the red and yellow tulips, it's a blue wonderland out there.

I have made some changes. I removed the dead tree and another odd yellow-green shrub that Sandy planted a few years ago but that never really worked where it was. I also yanked out most of the daylilies that had grown so thick that they never even bloomed anymore - they just sent up greens and then wilted messily. In their spot, I've added blue-flowering corydalis, a delicate plant I've always loved and that Sandy liked too. And I've planted some santolina, a wonderful fresh-smelling shrub that we used to enjoy in the front yard years ago.

I'll keep puttering out there, weeding and replacing things that fail. But the bones of the garden remain as they were when Sandy tended them. It's a huge gift to me, as I didn't think I'd have the energy to completely redo the front yard this year anyway. Such a joy to realize I don't need to. And so wonderful to know that Sandy's efforts are still giving pleasure to others.

Saving voice

Neither Sandy nor I have ever been fans of cell phones. But when we started biking longer distances—and occasionally miscommunicating about our intended route—we decided they made sense for emergencies. So Sandy went off to the AT&T store and bought us a couple of gophones. We put a little money on them and mostly left them off. However, they were incredibly handy on those long bike rides, and increasingly, we used them to call home when one of us traveled without the other.

I used mine most extensively when we were at the hospital and then at Bailey-Boushay. In fact, I had to retrain everyone after she died to go back to using the landlines to reach me because for about five weeks, the cell phone was the best way to get to me. I even started texting people because I could do it without waking Sandy. At one point at Bailey-Boushay, she asked me what a sound was, and I replied it was just the phone telling me I'd received a text. Her eyes got wide and she looked at me accusingly. "When did you start texting?" I wasn't completely sure whether she thought I'd betrayed our anti-texting bond or if she was just astonished, the way I was the day she came home in 2004 and told me she'd accidentally started jogging and discovered she liked it.

Anyway, I burned through the prepaid time on my phone, but when Sandy died, there was still a chunk of time on hers. I decided to take her phone with me on bike rides so that I could use up some of the money on it.

At one point, I had a visitation dream in which she and I were talking about how she was going to return. She seemed to think she had it figured out; it had something to do with voicemail. In the dream, I told her I didn't think it worked that way. A few days later, I dialed into the voicemail on my cell phone to see if anyone had tried to reach me at that number instead of the landline. One of the messages was a pocket-dial, a really annoying one. Then I realized I was hearing my own voice. It was clear that I'd pocket-dialed my cell phone from Sandy's, but I couldn't figure out at first when it had happened. So I opted to listen to the envelope information about the call—and I heard Sandy's voice saying her name. I hadn't remembered that she'd recorded her name on the cell phone greeting (and she didn't record a full greeting, just her name). She didn't come back in the way that I wanted her to, but I was thrilled that some small piece of her was still here.

As the cellphone prepaid minutes came close to expiring each time, I refilled the phone. I kept thinking I'd call AT&T and ask for the digital recording, but I didn't have the energy. And besides, there was all that money on the phone to use up. So friends got used to me using Sandy's cellphone on bike rides and for occasional texts. (They didn't necessarily change the way the phone number was identified; one friend said she's enjoyed receiving texts that appear to be from Sandy.)

Last month, I accidentally let the account expire. I missed it by one day, losing about $150 worth of time that had accumulated as I'd refilled it repeatedly. But I didn't care about the money; I was desperate to get the recording of her voice.

I called AT&T and the people I talked to at first told me that I couldn't get the recording because the account was a gophone account. Eventually they acknowledged that they had no idea how to do it, but would if they could. They suggested I call a couple of other departments that were equally clueless. The best anyone could suggest was that I call the cellphone number, play the greeting on speakerphone, and record it with whatever device I could find. Meanwhile, they assured me the greeting still existed, even though I couldn't hear it when there was no money on the account.

I put $10 on the account to buy myself a month's worth of time, and was reassured when I called the number and heard her voice again. I tried the speakerphone recording route, but wasn't impressed with the results. I thought about asking friends to call from their smartphones with various recording apps, but first I searched the Internet.

I don't know why it's so hard for AT&T to provide the digital file. Or for any phone company. They have it, clearly, and I would happily have paid $25 or more for the file. The question must come up occasionally, because I quickly discovered online that my request is not that unusual.

Happily, I also learned about a service called SavemyVM.com. You give them the information about the phone number and the messages you want to save, and they use high-quality equipment to capture the recording. They promise to get it to you in a day or two; I had Sandy's greeting an hour after I submitted the form, on a Sunday, no less. And I was happy with the quality.

She's still here, in some important ways.

I have the file now, backed up in a couple of places. I don't feel compelled to hear it all the time, but when I am feeling melancholy or bereft, I can play it, just as I play the other audio and video recordings I have and just as I look at photos or reread old emails.

Her cell phone account once again has no money on it. The AT&T folks were kind enough to preserve the account with her voicemail greeting for up to a year, so that I could add more money to it at any time in the next year and her voice would come forth again. But I have the digital copy I need now. I'm retiring her phone and returning to my own.

I feel a weird sense of loss about it. On one hand, the feeling of loss makes sense because I'm giving up one more thing that was hers. What makes it weird is that she didn't care for cell phones, and the one she ended up with was a particularly annoying model that replaced her original phone when she lost it. She'd feel no melancholy about letting this one go. Still, she carried this phone with her as she bussed to appointments the last year of her life, and occasionally, she'd call me from it with a question or just because she missed me. A few times she called as she walked home from a bus stop, bored and looking for distraction. I'd chat with her, hearing her exchange pleasantries with people and dogs, listening to her commentary on the landmarks she passed until she got to the front door, and then I'd be there waiting for her, ready to embrace her when we ended the call.