Sleepless in Trumpcare’s America

My husband was diagnosed with melanoma in January 2010, the same week Republican Scott Brown won Ted Kennedy’s Senate seat, thus eliminating the Democrats’ brief filibuster-proof majority. (Remember that long-ago nanosecond?) As our lives turned upside down, so did the outlook for health care reform.

Our sleepless nights and worst fears were compounded by the added stress over health care. I’m self-employed, and we depended on my husband’s job for insurance. We were a decade away from Medicare. What if he died, or grew too sick to work?

“Until now, I haven’t had any pre-existing conditions,” my husband fretted as sleep eluded us. “Now I’ll never be able to get insurance on my own.”

My husband and I were lucky — we had money in the bank, a home, jobs, and insurance, at least for the moment. Luckier still, my husband’s melanoma was caught early and successfully treated through surgery. Back then he still would never have been able to get insurance on his own if he lost his job, but we had dodged a bullet.

As my husband and I discovered, though, fortune can change in an instant.

Luckily for us and for tens of millions of Americans, the Affordable Care Act became law not long after my husband’s surgery. We rested easier about the future—ours and our daughters, who could now stay on my husband’s insurance until age 26.

Our lives were upended again in 2012, when I was diagnosed with cancer. Once again we were plunged into the realm of sleepless nights and fear, but thanks to the Affordable Care Act, we at least did not worry about losing access to health care, exceeding annual and life-time caps, or going bankrupt.

My treatment, like my husband’s, was successful, and our lives returned to normal, although with a newfound appreciation that health care should never be a game of Russian roulette or depend on luck, employment status, or wealth.

Thanks to the Affordable Care Act, our eldest daughter–an artist, part-time worker, and student who makes very little money–was able to find quality health care under the ACA’s Medicaid expansion once she turned 26. (We’re in California; she would have been out of luck if she lived in one of the 19 states that have refused to expand Medicaid.)

Also thanks to the Affordable Care Act, in 2015 my husband was able to leave his corporate job to pursue his longstanding interests in research and freelance writing. Employer-provided health insurance had kept him tied to his job, but with the ACA, he could slip those golden handcuffs and we could both be assured of coverage despite our pre-existing conditions. Additionally, the good job with good benefits my husband vacated became available for somebody else. Many of our friends also became self-employed and freed up jobs for others because of the security the ACA brought. We make too much money for any subsidies from the ACA, but that’s as it should be. Although our premiums are expensive, at least we have excellent care. It is not only lower-income people who benefit from the law: Economic vibrancy, flexibility, and innovation are under-appreciated but significant aspects. We are so grateful that President Obama signed the Affordable Care Act. Imperfect as the law is, it is has benefited us and tens of millions of Americans.

But now with Republicans celebrating a legislative milestone in their relentless march against Americans’ health, we are back to sleepless nights.

*

What has the ACA–and the Republicans’ attempts to unravel it–meant to you?

 

Wishing Well

Wishing Well JPG

The picture above is a wishing well in San Francisco’s Japanese Tea Garden. “Wishing Well” is also my title for an essay of mine that just appeared in the Washington Post. That’s a terrible title for our Internet age of tags and clicks and not caring whatsoever about clever titles with double allusions that mean nothing to anyone who hasn’t read the essay. Which why would they because what the hell is it about, anyway? Why take a risk on something that sounds confusing and suspiciously literary?

So the Washington Post’s title gets right down to it: “My legacy to my daughters: BRCA and cancer?” That’s right: My essay is about an unwelcome legacy in our family; what it’s like as a mother dealing with the fact that I might have passed on the gene that greatly elevates the risk of breast and ovarian cancer to my daughters; and how they feel about getting tested for the BRCA mutation. If you haven’t read my essay, you might want to do so now before reading the rest of this post. (In other words: “Spoiler Alert!”)

The essay ends on an ambiguous note, which prompted a Washington Post reader to ask, “But where is the ending? What about Emma?”

What about Emma, indeed? It’s so hard not to know what happened! At the time I wrote the essay, and at the considerably later time when it was accepted, we did not know Emma’s BRCA status because she did not want to know. Those of us who dwell in the BRCA land of No Good Choices in the Face of Risk swing back and forth between twin slogans: “Knowledge is Power” and “Ignorance is Bliss.” Emma chose the latter, as did I for a while, until my own uterine cancer forced me to come into knowledge I did not necessarily want to possess. So I understood Emma’s decision, even though it made me anxious. (If she had decided otherwise, I also would have been anxious.)

This is how things were for three years. Then Emma changed her mind about testing. Partly time softens us for readiness. But what really made the difference for Emma was an NPR report about how women who work with someone with breast cancer are less likely to get their own routine screenings because they are frightened seeing the disease up close and personal. Their denial snapped Emma out of hers (another reason you should support NPR).

Less than two weeks before my essay was published, Emma learned her test results. She does not have the BRCA mutation. We cannot believe our good fortune that both daughters have dodged this bullet. The wishing well granted my wish!

I debated long and hard about whether to contact the Washington Post editor to add an epilogue. After all, as the reader’s plea reminds us, we like to know how things end. We especially like a happy ending, and I feel a bit churlish to have withheld it.

But it so easily could have gone the other way. I had also seriously debated whether or not I would ask the editor to pull the essay altogether had Emma’s news been bad.

In the end, I decided to leave the essay as it stood. The point, after all, is that legacy is multi-faceted, we rarely know the ending of anything, and we must bear the anxiety of not knowing (especially as parents). The flip of the coin went our way this time, but it won’t for many facing the same dilemma, and it won’t for us other times. That’s just how life goes.

But for you, dear Shrinkrapped reader, I’m happy to provide a happy ending to this particular story, and happier still to have one to provide!

 

 

 

The Pull to Be Positive

happy and sad face“Fake it till you make it.”

I thought of this adage when I took a friend who had never been backpacking into the wilderness years ago. We encountered a stream crossing that involved balancing on a log high above the roiling waters below.  I was terrified, but I never let on. My confidence was key in helping my friend safely across. It also helped me become as light-hearted as I had pretended to be.

Three years ago a cancer diagnosis thrust me again into the territory of needing to go on despite my fear. I wanted to lead everyone who cared about and depended on me, especially my children, through the treacherous waters without raising undue alarm that I’d go under, taking them with me. My darkest feelings were confined to my journal, my therapist, my husband, and a couple of trusted friends. For public consumption, I presented a sunnier side, writing breezy blog posts about wigs and Chinese medicine, stressing my gratitude and good fortune. It wasn’t a stretch: I was tolerating chemotherapy well, and felt truly lucky about early detection, great health insurance, an excellent prognosis, and lots of support.

The plaudits poured in.

“You’re so strong!” I was told all the time. “You’ll be fine because of your positive attitude.”

The implication that it would be my fault if things didn’t turn out fine always brought me up short. But being strong for others helped me be strong. Inspiring others kept their and my own spirits from flagging. I loved and needed the admiration.

I also hated it. For what if my spirits sagged? If I expressed too much doubt and fear, would I be letting down my fan base?

More important, would people desert me?

No one means to withdraw, but it happens: the involuntary recoil, the averted gaze, not knowing what to say, so saying nothing. I couldn’t bear the burden of people’s fear and helplessness. I couldn’t bear my own. So I tried not to add to it. Besides, who doesn’t want to flee the quicksand of negativity? Emphasizing the positive truth, even if it wasn’t the whole truth, was an act of self-preservation.

Only much later, long after treatment had ended and I knew I was fine, could I fully let in the darker side. It reminded me of the time years ago when I tripped and fell carrying my newborn daughter, asleep in her car seat. The seat, with Ally in it, landed hard on the concrete walkway. Fortunately, it remained upright, my baby safe and unperturbed.

“Oh, thank God,” I’d silently gasped, brushing myself off, scooping up Ally in her car seat, and continuing on, barely registering the close call.

It was only later that I could allow in the terror, all the What ifs? Ally is 24 now, and I am still overcome with dread whenever I think back to that moment.

Cancer is never over in a moment. Even when it’s gone, the possibility of its return menaces. Of course I celebrated leaving treatment behind. Yet the more chemotherapy’s protective shield of poison withdrew from my body and faded into the past, the more vulnerable I felt.

As previously disavowed feelings of fear and sadness bubbled up to the surface recently, I happened to tune into a TED Radio Hour about fighting cancer. A hospital chaplain who herself had gone through the ordeal stressed that only well after treatment has ended can survivors even begin to process their cancer experience.

Finally! Someone willing to challenge the platitudes about looking forward, not backward, the claptrap about cancer’s gifts. I listened eagerly as the chaplain described meeting with a woman a year after the latter had been declared cancer-free.

Revealing the suffering and fear she’d repressed during treatment, the woman remarks, “I felt like I was crucified on the cross.”

I waited expectantly for the chaplain to enlighten the TED audience about the isolation of cancer; the need to express what it’s really like; how crucial it is to listen to what’s hard to hear.  Instead, the chaplain recounts what she said to the woman:

Get down off your cross.”

My worst fears were confirmed: Fake it till you make it, or you may find yourself having to make your way alone.

*

What’s your experience with the pull to be positive? Upsides and downsides? What’s your best (or worst) “Fake it till you make it” story?

Moment

MomentI hear my iPhone vibrate just before the end of the therapy session. By the time my client dries her tears, writes a check, and takes a few Kleenex for the road, it’s 12:55–five minutes before my next client.

I punch in the voicemail code and listen. It’s the doctor, the one who removed a polyp from my uterus the week before.

“It’s likely nothing,” she had assured me. “Ninety-nine percent of the time everything’s fine.”

Now I hear her voice: “I need to talk with you, so call me. They can come and get me even if I’m with someone.”

Because I must be with someone and their troubles in less than five minutes, I don’t call then. But in that moment I know I have cancer.

I pretend I don’t know so I can make it through the session.  Then I usher my client out the door and prepare myself to return the call I don’t want to return. I’m supposed to meet my friend Deb for a walk—a walk I’ll need now more than ever, which is why I do not cancel it. I can count on Deb. I can also count on her to be late, so I hit “Call back” on the doctor’s message en route to our rendezvous spot.

The doctor says she’s sorry to have to tell me this, but the biopsy turned out to be cancerous.

“We were all so surprised!” she blurts out, apologizing for how light-hearted everyone had been during the outpatient procedure.

It’s true—she, the nurses, and I had treated it like a lark, laughing and telling raunchy jokes as I, woozy with painkillers, lay on my back with my feet in the stirrups while they dug out the suspect tissue.

The doctor tells me she doesn’t yet know much, but wanted to call right away so I could begin to wrap my mind around this. She utters the words “uterine papillary serous carcinoma,” which I gather is the technical term for uterine cancer. I write it down so I can look it up at the end of my long, busy day. The doctor quickly mentions next steps, adding that early detection is on our side. I can tell she wants to get off the phone even more than I do.

Luckily, Deb arrives just then, so I release the doctor and turn to my friend.

“Guess what? I just found out I have cancer,” I say matter-of-factly.

Deb is full of hugs and sympathy, even though she cannot keep from pointing out the house where her friend who died of melanoma lived.

“Don’t tell Jonathan,” she says, meaning my husband, who was diagnosed with melanoma two years ago. He’s completely fine now.

I’m not sure if Deb means I shouldn’t tell Jonathan some people die of what didn’t kill him, or if I shouldn’t tell him I have cancer.

But I do tell him, when we are both home from work. Jonathan is shocked, as am I, which must be why I’ve so blithely been able to carry on with my day even though my life has been upended.

Jonathan and I both assume that, like him, I’ll be fine, too. Uterine cancer, after all, is the one everyone says is the kind to have if you must have cancer. Even my mother, a hypochondriac given to fits of hysteria, sailed through hers with barely a whimper.

After a brief interlude of hugs and tears, Jonathan and I sail through the rest of our evening as if nothing, not even cancer, can interfere with our plans. We are determined to watch President Obama accept the nomination for a second term at the Democratic Convention. We are even more determined to present a good face to our 21-year-old daughter, Ally, who returns later that night brimming with stories from a backpacking trip.  We lap up her enthusiasm as if our lives depend on it. Perhaps they do.

After everyone has gone to bed, I sit down at the computer a few minutes before midnight and google the fancy term the doctor used: “Uterine papillary serous carcinoma.”

Rare and aggressive.

Highly malignant.

This is not my mother’s uterine cancer. I read on, fear choking me like ash. Even women with Stage 1 UPSC have an iffy prognosis. Will I make it to Ally’s college graduation next year?

For six months between that moment at 12:55 and the first day of spring, when treatment ends, my life is measured out in precisely timed appointments: CT scans; a complete hysterectomy sandwiched between pre-op and post-op meetings; oncology and Chinese medicine consults; chemo and nutrition classes; bloodwork; wig fittings; three rounds of internal radiation; acupuncture; six infusions of poison into my veins. I imagine the invisible cancer mushrooming inside me. Not knowing how many moments I have left, each moment is etched in my brain.

Then it is over, and I am fine. At least for the time being. I make it to my daughter’s college graduation. In the pictures of me standing next to her in cap and gown, my smile is wide, my wig slightly askew.

When I was a teenager I read a short story about people who are granted the power to learn the exact hour and manner of their deaths. Initially grateful, they spend all their time trying to outfox fate, to no avail. They die anyway, having spent their entire lives obsessed, anxious, and miserable.

The last thing I want is a crystal ball. Time already stopped once, at 12:55 on a September afternoon.  I do not want to know when it will stop for good.

*

Today is the third anniversary of my cancer diagnosis. I am fine. What moments–for better and for worse–are etched in your memory?

O is for Obamacare

iheartobamacare_400pxFirst off, let me just say that I believe single payer is the way to go. No system is perfect, but single payer delivers quality healthcare more equitably, efficiently, and cost-effectively.

That said, I’m a huge fan of the Affordable Care Act, aka Obamacare. Yes, its origins lie in conservative think tanks like the Heritage Foundation and the American Enterprise Institute, which promote market-based policies that privilege the profit motive. Obamacare does not go nearly far enough for many, including me.

Yet it’s what could get through a political system that is sclerotic, controlled by monied interests, and held hostage by a Republican Party practically unhinged in its hatred of President Obama.

It’s a profound success that more than 16 million Americans now have health insurance they couldn’t before afford or couldn’t get due to preexisting conditions. Obamacare is also slowing skyrocketing healthcare costs.

My family has been among Obamacare’s many beneficiaries:

For one thing, our kids have been covered under my husband’s employer-provided insurance until they turn 26. Since Emma aged out last year, she’s been fortunate to get healthcare she could not have otherwise afforded. Pieced-together, low-wage employment is common for young people now: Emma survives as an artist on part-time Russian translation work while also working in a restaurant.  Initially, Emma benefited from Medicaid expansion (again, she’s lucky to live in a state that opted into this provision of the law). Now that she’s a bit more stable economically, subsidies help her afford excellent health care through our state’s health exchange. When our younger daughter, Ally, moves back this summer from Spain (where she’s enjoyed the benefits of national health care) she, too, will be able to find affordable health insurance.

Of course, since Ally’s only 24, she could also still be covered under my husband’s plan. Except that he’s retiring in May! This, too, is something he never could have done before Obamacare. We’ve both had cancer, which involves ongoing monitoring. I am self-employed, and there is no way we could have gotten individual insurance because of our pre-existing conditions—a heinous denial of coverage that Obamacare outlaws.  Now my husband can pursue other interests free from the burden of remaining tethered to a job simply because we need health insurance we otherwise couldn’t get. And somebody else who needs and wants a job can have the position my husband will soon vacate.

Sure, we’ll pay a lot for coverage on our own. We’re too well off to qualify for subsidies, which is as it should be–they are designed to help those less fortunate. Of course, we’ll still benefit from annual out-of-pocket caps, free preventive services, and the knowledge that we and tens of millions of other Americans will no longer have to worry about the Russian roulette that used to be national policy.

Don’t get me wrong—I know that Obamacare is far from a panacea, and that for those who are healthy and whose incomes are a little but not a lot above the subsidized level, health insurance is far from affordable. For some it’s become more expensive. And because our system has engendered such a complicated law, tax season has become even more migraine-inducing than usual.

Yet we should be careful not to blame Obamacare for what had been happening for years anyway—premiums skyrocketing, people getting dropped, families going bankrupt due to lifetime caps, employers reducing hours to avoid providing benefits, or simply no longer offering health insurance at all.

It is a reform in process, but its benefits far outweigh whatever drawbacks exist.

What saddens and outrages me the most, though, is how much energy has been put into destroying rather than improving Obamacare. And I’m not even talking about the lies (remember death panels?) designed to thwart it from the get-go. The Supreme Court allowed states to opt out of Medicaid expansion, leaving millions of poor Americans who live in 23 (mostly Republican-controlled) states uncovered yet unable to afford healthcare on the exchanges.

Now even the federally managed exchanges (set up because so many of these same states refused to take responsibility for their own residents, and passed the buck to the Feds they deplore) are at risk as the Supreme Court considers King v. Burwell. If the Supreme Court rules in favor of the plaintiffs in a case that is based on what most see as the political exploitation of a semantic glitch, it will likely prove Obamacare’s unraveling. Which is exactly what its scorched-earth opponents want.

What do I want? It’s simple, really. I want a law that has helped tens of millions of Americans already, and which promises to benefit many more in the future. I’m grateful to President Obama for achieving what no other president had been able to accomplish.

Please—hands off our Obamacare!

Good News, Bad News

Good news bad newsWhen my friend Sue met her future husband, she was eager—and nervous—to tell her parents she had fallen in love.

“There’s good news and bad news,” Sue  began. “He’s Jewish.”

“Oh, Sue!” Her mother exclaimed. “But we’re Catholic! Nothing against him, it’s just that we’re so different. It will never work.”

“Oh, that was the good news,” Sue replied. “The bad news is that he’s a Democrat!”

I, too, have good news and bad news, though it is not so charming as Sue’s (whose family, by the way, grew to adore her husband).

First the good news: I have been published in Salon! Making it into a major publication is a dream come true.

The bad news is that the essay is about what some, but not many, people already know:  I carry the BRCA mutation. This is the genetic defect that puts women at high risk for breast and ovarian cancer. It was made famous by Angelina Jolie, who wrote in the New York Times two years ago about her decision to surgically remove her healthy breasts to reduce her BRCA cancer risk. Just last week, the Times published another piece by Jolie about her recent decision to remove her ovaries and fallopian tubes to avert ovarian cancer.

Jolie’s first announcement came soon after I had finished nine months of treatment for a rare and aggressive form of uterine cancer, which was fortunately caught before the cancer had spread. My treatment included surgery (a complete hysterectomy, so the deadlier ovarian cancer threat no longer looms), radiation, and—just in case—six cycles of chemotherapy.

I had known well before my diagnosis that the BRCA mutation resided in a distant branch of my family tree and had mentioned it to my doctors, but did not pursue testing at that time. Two years later, my uterine cancer’s unusual cell type and the family history I had disavowed led the surgeon to suspect BRCA in me, not just in cousins I barely knew. So I met with the genetic counselor and went to the lab to have my blood drawn.

I got the results a week before my first chemo session in 2012. Sure enough, I tested positive for the BRCA2  mutation (a slightly less risky variant than Jolie’s BRCA1).

So I have something in common with Angelina Jolie! But there the similarities end, for I have chosen high-risk surveillance over prophylactic mastectomies. It’s actually the more common choice among BRCA-positive women, but you wouldn’t know it given all the attention to radical  surgery to remove healthy breasts. Neither choice is easy or risk-free. I felt I could contribute to an important conversation by writing honestly about what it is like to know that one’s body houses a potential time bomb as well as what went into my decision to go with the less-heralded surveillance option. And I am grateful that Salon agrees.

My BRCA mutation has been there all along. I have known about it since Halloween 2012. And now you know it, too. It is perhaps not the best way to find out, but I trust you will understand.

*

Please click here for the link to my Salon piece. I’ll be curious to hear what you think.

 

On Turning Sixty

60th Birthday Hike, EBMUD watershed, Rocky Ridge“How are you feeling about your birthday?”

It’s a common question, especially when the birthday ushers in a new decade.

My birthday, which I recently celebrated, is the one where people say, “Sixty is the new 40!” That’s because it is impolite to say, “Sixty! That’s verging on old!”

Not old enough to get the senior discount at the movie theater, enroll in Medicare, or collect Social Security. But within spitting distance.

How do I feel about turning 60?

I feel great.

Since being diagnosed two and a half years ago with a rare and aggressive form of uterine cancer, there is nothing I have wanted more than to grow old.

I was lucky—my cancer was detected early, and I am completely fine. Still, a serious diagnosis permanently pierces the veil that obscures mortality. And even though I fervently believe that anyone who says “the gift of cancer” ought to be shot, the glimpse of death that burned through all my neuroses and made me feel keenly how much I want to live is the gift of cancer.

In The Year of Magical Thinking, Joan Didion writes that when her husband had a cardiac event in 1987, she refused to believe him when he said, “Now I know how I’ll die.” He dropped dead of a massive heart attack 16 years later. Sixteen years is a decent interval, but still, the original diagnosis presaged his end.

That’s how I feel, too. Unlike with Didion’s husband, whose condition was dubbed “the widow-maker,” there is no reason to believe that my cancer will make my husband a widower, my daughters motherless, my future grandchildren unknown to me. Still, it shadows me–not as a morbid preoccupation, but as a plausible outcome. I hear about people who beat cancer 10, 20, 30, 40 years ago. Then it comes back with a vengeance.

A few months back, my husband and I were chatting about life after retirement.

“I don’t care about living till I’m really old,” Jonathan said. “As long as I make it to 80.”

I began to cry. “I don’t think I’m going to make it there with you,” I said softly as he put his arms around me.

I hope I do, just as I hope to get the senior discount at the movies, know my grandchildren, celebrate our 50th wedding anniversary.

But whatever happens, I have made it to 60! We celebrated exactly as I wished–a thirteen-mile hike through rolling green hills with Jonathan, followed by an intimate dinner with dear friends. We toasted with gin and tonics, bemoaned then solved the problems of the world, and gorged on an incredible gourmet spread topped off by chocolate Kahlua cake. I couldn’t have asked for anything better.

Lorrie's 60th

Here’s wishing for many happy returns.

Lurking with Intent to Mope

dark_and_brooding_by_markeverard-d5juhy9

“Lurking with intent to mope.”

I burst out laughing when I heard this, even though I was listening to a Fresh Air tribute to David Carr, the New York Times reporter who died from cancer this week. Carr himself provided the laugh, quoting a police officer’s description of him during his years of crack addiction and petty crime. The cop was so tired of Carr being hauled in all the time that he looked up from his desk at the pathetic loser before him and said, “Oh, you again. What are you in for now? Oh, yeah–lurking with intent to mope.”

I can so relate. Not to the crack addict and petty criminal part, but to the wallow of self-pity. So all-encompassing. So hideous. So delicious. And as hard as any addiction to break.

It took cancer to break mine. Cancer is like a white-hot brush fire that burns away neurosis, leaving in its wake a deep appreciation and sharpened clarity about what matters. For a while, at least, it becomes very clear that life is just too short for lurking with intent to mope.

Cancer’s other lesson is that neuroses grow back faster than hair, so although I never brood like I used to,  I’m still an occasional contender.

I happened to hear David Carr’s interview on the first day of Lent, which gave me the inspiration I’d been seeking. As a lapsed Unitarian, I don’t really grok with the notion of self-sacrifice. But since I enjoy the camaraderie of commiseration, I like to cast about for something to give up. Not something impossible, like chocolate, mind you.

But lurking with intent to mope? I’ll try to forego it for forty-eight days.

*

Can you relate to “lurking with intent to mope?”  What will you give up for Lent? 

A Glint of Light in the Darkness

Christmas balls hanging from treesRecently I had to be somewhere very early in the morning. Since I am not fit for human company without my daily walk and latte, I set out on foot before the pitch-black December sky had begun to gray around the edges.

My route took me through a neighborhood where all the households join together during the holidays to hang enormous shiny balls from the trees lining both sides of the street. I could see nothing, except for slivers of silver on each orb, reflecting the dim light from the lone street lamp at the end of the street. I continued on to my favorite café, its bright interior and friendly staff another beacon piercing the dark.

Fortified by my latte and the subtly glowing branches, I headed home to join the early stream of rush hour traffic.

I needed to be out and about before dawn to take my new friend Marcy to chemotherapy. Marcy was given a diagnosis of Stage 4 ovarian cancer and six months to live. That was four and a half years ago, time she has spent traveling all over the country seeking out cutting-edge treatment and clinical trials. These efforts have kept death at bay, but now the cancer is starting to break through even in the midst of grueling regimens.

These are dark times, for Marcy and for a world riddled with problems of such magnitude that sometimes the only way to cope is to withdraw. The season of solstice reflects this. Light is in short supply, and so, at times, is hope. The urge to pull inward is strong.

Yet even though Marcy may be running out of options, her spirit and will to live are strong. So it is in the world as well–joy and kindness abound, relieving despair. As we pass through the darkest time of the year, there are always shimmers of light.

 

 

 

Filling in the Blanks, Turning the Pages

Tonight I will fill in the last blank space for Year Two in my line-a-day-five-year memory book that my friend Mary gave me soon after I was diagnosed with cancer. Tomorrow I will begin Year Three.

I like to look at what was happening in the previous year’s entry (now it will be years’ entries!) Mostly they’re pretty mundane: “Hiked Baldy and went to work.” “ Skyped with the kids.”  “Saw Gone Girl [disappointing].” “Saw Kill the Messenger [two thumbs up].”   “Slept poorly.” “ On track with my eating.”  “Not on track with my eating.”  “Wrote.” “Avoided writing.”

Sometimes, though, when I read the previous year’s entry, I’m jolted by the poignancy of all the mundane moments that make a life, and how they do not last forever. Three days ago, for instance, I read that last year on the same date, I had lunch with a colleague. We met to share our experiences about what it was like to be therapists who were working while undergoing chemotherapy for an article I was writing, “The Myth of the Intact Healer.” Seven months out of treatment and with an excellent prognosis, I had just come out of my wig. My colleague admired my curls, then told me about her collection of wigs—the ones she would never come out of because she was never going to be done with cancer until it had finished her off.  She was as beautiful and full of life as all the times I’d seen her throughout the years.  I remembered our lunch as I read last year’s entry for October 25: “Had lunch with S.” That was the last time I saw my colleague—she died last month.

It brings me up short, this turning of the pages, remembering, filling in the blanks, wondering how many more blanks I’ll get to fill in, whether I will complete one or two or ten line-a-day-five-year memory books.

And now, on this day of the calendar’s cusp, as I move from Year Two to Year Three, I’ve opened an email from a woman I haven’t yet met named Marcy. Marcy lives in Portland, and has been living with Stage 4 ovarian cancer for the last four years. (She blogs about it at livinglydyingly.com) A long-time organizer and activist, Marcy believes in the power of community, building it through ever-expanding connections.concentric circles in rippling water I came to know her through being on one of the farther concentric circles that ripple out from her center. Marcy’s request for help with transportation and housing to pursue cutting edge treatment around the country traveled through many networks to reach my friend’s activist daughter, who forwarded it to her mother, who forwarded it to me.

I haven’t yet been able to take Marcy to the airport when she’s needed me to, and she hasn’t yet needed our extra bed. But we have struck up a lovely email correspondence. In the one I opened today, Marcy included a link to something she’s written for Yes! Magazine. It’s called “What I’ve Learned About Living from Dying of Cancer.” You should read it yourself, because as you can see from my confession in earlier paragraphs, my summary certainly won’t do it justice. But here is one of my favorite parts:

I sought out other women living with a pink slip from life and discovered how hard it is for us to find each other. Medical privacy laws don’t help. Advocacy groups are often Web- or hospital-based, but not everyone flourishes in those settings. Eventually I created my own support circle of other women with terminal cancer. The group is called “It’s a Dying Shame,” and the outreach flyer states, “Our goal is to explore the rich and peculiar territory of facing our own deaths. Together we can mine the humor, strangeness, and beauty of a life turned upside down. Join us for tea down the rabbit hole.”

My cancer scare notwithstanding, I do not pretend to have the vaguest idea of what it is like to have gotten a pink slip from life, and I am glad for the ignorance, glad that I have the luxury of skirting that rabbit hole for now.

Still, when I turn the page on another year tonight, I will think of my colleague, of Marcy, of the many good and bad movies I have seen and hope to see more of. I will try to honor each day’s moments, and how precious and mundane and fleeting they are, whether they stop before they can be recorded in the next entry, or go on and on and on.