I’m on a raft alone, paddling through class 5 rapids.  In the dream my eye catches a place on shore to pull over and rest but the current pulls me down to the next set of rapids where I’m tossed and swirled and have no sense of the direction I’m supposed to be traveling.  The water is angry and as it threatens to reach up and drag me out of the raft and under the surface, my fear is that I’ll never be able to catch my breath. 

Vulnerability.  The emotion that terrifies me most.  The feeling that I am helpless, at risk, in danger.  An odd choice so late on this cold Christmas night as I search for the right words to describe my frustration.  Wondering why I was allowed to enjoy the holiday with my family and friends today while Barbara, Joannie and Patty were not.  It’s been five months since the last of their deaths, yet my struggle to make sense of their loss refuses to lie down and be still.  Our society is transfixed by intransigence where narrow-minded ideologues scream angrily to keep people out rather than embracing them and offering them a chair at the table of civilized debate.  In a polarized world like that, how can I honor these three ladies with dignity rather than sloppy sentimentality or mean-spirited exclusion?   

According to Brene Brown, a researcher at the University of Houston’s Graduate College of Social Work, the essence of my quandary lies at the feet of vulnerability (my most unfavorite emotion).   In her work she discovered that vulnerability is what allows us to be seen as the people we really are, not the people we try to convince others we are.  The people in her study who described vulnerability as “necessary” rather than “excruciating” were able to do so because they believed they were worthy of receiving all that love and a sense of belonging.  That sense of worthiness gave them the courage to be imperfect, to let others see when their emotional slips were showing because it was who they really were. 

The desire to numb vulnerability is normal.  It’s painful.  We’re one of the most privileged populations on the planet yet we’re also the most in debt, obese and addicted as we desperately seek ways to avoid that pain.  Here’s the catch.  Pain-numbing is an all or nothing game: we either feel everything or nothing.  Whatever we use to numb the emotional pain also keeps us from feeling positive emotions like joy and happiness, leaving us with a pale, flat version of ourselves who still don’t believe we’re worthy of love and belonging.  What is up with that?

In this video presentation, Brown reminds us that we all deserve to give ourselves the gift of vulnerability because it offers meaningful benefits:

• The compassion to be kind to ourselves, because we can’t be compassionate to others if we cannot practice it on ourselves first. 
• The connection to let go of who we thought we should be.  
• To fully embrace vulnerability and know that it makes us beautiful. 
• Not to view it as comfortable or excruciating but a necessity, a place where we’re willing to say something as risky as “I love you” with no guarantees.

So, although I’ve tried hard to avoid it, the best way to honor Barbara, Joannie and Patti is to stop and feel the pain of their absences in my life, not run away from it.  To allow myself to laugh and cry with their memories rather than pushing them away.  And to continue to grow physically and mentally stronger as I take another and another step away from the disease that still connects us.

Please accept this video reminder as my Christmas gift to you this year.  And I hope you’ll join my prayers for a world where there is less screaming and more listening.  Hallelujah!

I jot down the too-familiar phrase in my address book “Died July 13, 2011” beside Patty’s name just as thunder shakes the house and rain sheets horizontally down the street. The weather matches my mood – dark and angry. This time I thought I was prepared. This time I thought I could successfully master my emotions because – from a purely logical perspective – Patty’s death was about her, not me. There was a critical flaw in my logic, however. A flaw that I still haven’t figured out how to control: when you lose a friend – especially one who’s still in the prime of her life – it hurts like hell.

Letting go. Have you ever noticed how life seems to offer unending opportunities to perfect this unforgiving skill, as though it’s something we need to practice? Really? In the painful life lessons department, Death gives the toughest exams, slamming the door on hope with a grim finality that can’t be negotiated or changed with extra credit.

I’m not even sure it’s realistic to get a good grade in this subject. What I do know is that for two weeks Death waited patiently in Patty’s bedroom – a silent, incongruous presence next to the cheerful blue gingham curtains at the windows – while her husband, Alan posted an anxious vigil at her side.

Patty and I met at a support group meeting three years ago. I’d joined a few months earlier but seriously considering dropping out. The leader didn’t manage the discussion and the participants were doing all the work while she sat back and watched passively. That meeting proved to be different because Patty was there. A former nurse who embraced the model of annual mammograms, she had been diagnosed with breast cancer at Stage 4. Her strawberry blond curls bounced as she laughed. And she laughed often: a laugh that engaged her whole body so completely that it seemed almost too big for someone so small to control.

Later, over skinny decaf lattes, we learned more about each other and confirmed the spontaneous “click” between us. That night we knew we’d be linked together until we died – whenever that was.

Now I’m left to replay in my head several short video clips of Patty’s last days, editing and resequencing them in endless combinations. Hoping that perhaps I’ll discover how to fit the sharp-edged reality of her death into the stubborn, round hole of acceptance.

Clip 1: Patty arrives at our June support group meeting wearing rumpled cotton shorts and a white t-shirt (“4 for $10 at A.C.Moore,” she crows proudly). She’s very thin and her eyes reveal the solemnity of her secret: the real dying has begun. She‘s in hospice and she’s come to say goodbye. “What I want you to know is, it’s not so bad,” she tells us with a sad smile.

Clip 2: I arrive after work bearing a green tea frappucino and dark chocolate graham crackers, hoping they will tempt Patty to eat a little something. Alan is pleased she’s sitting up and talking and as I leave she’s polishing off the last graham cracker.

Clip 3: I fluff her pillows so Patty can sit up for a few minutes. She sighs softly as she settles back and smiles, but fatigue dulls the normal sparkle in her eyes. “I’m so ready for this to be over,” she tells me and Ed without a trace of bitterness or anger.

Clip 4: I sit beside her on the bed, her hand in mine, studying her face. Her eyebrows are strawberry blond like her hair. I always envied those curls. Blue eyes open and focus on me. For the briefest second she smiles in recognition. Then her eyes drift closed and she sighs back to sleep. What is going through her mind? Does her conscious mind know she is dying? Is a disjointed filmstrip of her life playing in her head on an endless loop: vignettes of when her children were small, meeting Alan, their life in Belize?

I talk quietly, asking about her day and telling her about mine. No response. No playful smile or ready laugh. No sidelong look while she comments under her breath. She’s slipping away, declaring her independence from this life a bit more each day.

Clip 5: Our friend Karen arrives just after I do so we go upstairs together. Patty’s awake. We kick off our shoes and settle in on each side of her bed – pajama party style. Snippets of ideas and memories jockey for position in her disorderly sentences. Sentences that are at once confusing and hilarious. At first Karen and I struggle to remain serious and attentive. But after several sharp changes of direction, we look at each other and burst into giggles.

Patty looks puzzled. “I’m not making sense, am I?”

“No,” we answer in chorus, “but it’s okay!” before we dissolve into giggles again. This time Patty joins us. Alan walks into the room smiling. The spontaneous laughter, like a healing balm, pops the cork of dread hanging in the room.

Clip 6: “We have someone with her 24 hours a day now,” Alan tells me when he answers the door. “She’s been in a deep sleep most of the day.” When I walk into the room her son and son-in-law are there and I ask if I’m interrupting. “No, no, come in, please,” they say and offer their chairs.

Patty’s sleeping on her side, her right arm tucked under her head. I want to believe that she can hear me. After asking if it’s okay I kick off my shoes, take my seat on the bed and start asking her questions. Slow, steady breathing is the only response. No visible awareness of my presence. The men slip out of the room for a break.

If I were Patty, what would I want a visitor to do for me? Maybe read a story. I spot a bible on the bedside table and flip the pages looking for a passage that doesn’t go on too long or is too depressing. Ruth – I always liked her: strong, capable, loyal. A gutsy gal. I begin to read. As the action picks up I’m reminded of what a savvy negotiator Ruth’s mother-in-law Naomi was, especially in a society where men made all the rules and women had few rights. Ruth and Naomi, bound by their love and respect for each other, refuse to be intimidated and work together for their mutual benefit and that of others. I look over at Patty, still sleeping. I wonder if she liked the story. No response, nothing but the sound of her breathing.

Clip 7: Patty’s home phone rings several times before the answering machine picks up. I leave a message, trying to sound upbeat. But a tinge of worry snakes through me and I shiver. Has something happened? Is that why no one answers? Alan calls an hour later to give me an update and we agree that I’ll come over tomorrow.

Clip 8: While I’m sitting with Patty I hear a neighbor and her husband arrive for a quick visit. The neighbor sweeps into the room and we exchange introductions. I watch as she drapes herself across the bed so she can wrap her arms around Patty’s head and cover her face with kisses. Roused and surprised, Patty moans and raises her hands in surprise. Too much, too close, too sudden. After the neighbor leaves, I remain for several more minutes, my hand resting lightly on her shoulder. I hope it calms her.

Clip 9: A white SUV is parked in the driveway when I stop by after work. Dr. Sullivan, the palliative care/hospice doctor is talking with Alan in Patty’s room so I take a seat downstairs. After the doctor leaves, Alan tells me, “Dr. Sullivan says this is the last time he will see Patty.” I wonder how Alan is keeping it all together. Why isn’t he exploding into little pieces from an overdose of fear, anger, frustration and grief? How does he go on day after day?

Nine vignettes that threaten to invade my memories of Patty before she went into hospice. Yet after a hundred replays I’m still not ready to accept that she’s gone. My mind drifts back to that last visit: me in the chair beside her, Adam in the chair near the foot of the bed, Alan propped up on an elbow on the other side of the bed. We talked quietly for several minutes while I gently stroked Patty’s shoulder. As I prepared to leave I leaned over to kiss her forehead. Adam said softly, “Thank you for loving my mother.”

Adam’s words echo in my head each night before I go to sleep. I hope he knows how little effort that required. How easy Patty made it to be her friend. All I had to do was show up. What I pray for is that somehow, in some small way, my friendship made it easier for her to take that final step…all by herself.

The chartreuse leaves of the maple tree shock against the brilliance of a blue sky. As I bend to retrieve the newspaper from the sidewalk, a goldfinch lands on the rim of the bird bath and preens in the early morning glow. It’s been a dreary winter and a cold spring. But mornings like this are why I will myself through the long months of drear – so I can stand on the sidewalk in my terrycloth bathrobe and blubber at the beauty of it all.

This winter the drear wasn’t just about the weather. Tense silence and emotional outbursts from my boss made it clear we were racing toward a break-up. Four years ago this job was my first, shaky step back into the workplace after several months of cancer treatment. It was where I grew physically stronger and regained confidence in my professional capabilities. My new colleagues and I happily paired our skills to enhance the professional development services we offered to employees and client agencies. In the last several months, however, I’d sensed a change. While agency requests increased and the workload grew, new project opportunities heading my way were directed elsewhere or dropped. I’d arrived at a dead-end that was impossible to navigate. After a particularly disturbing encounter with my boss in late January, I drove home to update my resume and register for several online job boards that specialized in human resources positions. The search was on.

I knew that just winning an interview spot would be challenging. But at fifty-eight I needed to highlight my experience and “bring it” way better than the 30 and 40-year-olds I was competing with. I started with a critical look at my resume. As an HR professional looking at me on paper, would I hire me? Or were there red flags that might make me hesitate?

I confirmed that there were no wayward date references to my undergrad and graduate degrees. I trimmed off the first ten years of experience and reduced the font size to 10 pt. so everything would fit on three pages. I revised my opening objective statement from “more than thirty years of experience” (scary!) to “…with more than twenty years of experience…” I axed the passive voice, inserting action verbs used most often in job postings that could be snagged by online key word searches. I drafted a convincing, high-energy cover letter that could be customized to reflect the specific position I was responding to. To monitor my progress I created an Excel spreadsheet where I could track what positions I applied for, log responses I received and what follow-up action(s) I took so I could avoid duplication of a follow-up note or phone call.

Those actions were the easy parts. Next I turned my attention to networking. Since my current employer is large, I needed to target connections inside where people possessed current experience with my recent work as well as outside the organization for maximum results. (BTW, LinkedIn is a wonderful tool to reconnect with colleagues.)

I attended at least one professional meeting each month and set a goal to follow-up with three new contacts at each one. I also let a (very) few, trusted colleagues at my current employer know I was looking and asked them to listen for rumblings of potential opportunities in other departments.

Then it was time to scrutinize the physical plant, that is, the package I presented to the world. I’m not ashamed of my age. I’m proud of my life and accomplishments and the wrinkles that reflect the challenges. But I know the importance of the first impression for an interview candidate. If I forced the world to question whether I’d be able to keep up in a fast-paced work environment because I looked dated and doddery, that would be an offense I perpetrated on myself.

I reduced the time between root touch-ups from six to four weeks and made sure that my hair was regularly trimmed. I went shopping in my closet for separates that were most flattering and work appropriate, consigning threadbare and/or shapeless pieces and too-short (or worse, pleated!) trousers to a charity bag. I hemmed long skirts that made me look matronly and shopped the sales for inexpensive accessories like belts, earrings and necklaces to update my look.

After three admittedly angst-ridden months, two quality job offers came to me in the space of one week. I negotiated the terms with a new department in my current organization and will start at the end of the month.

If it’s time for you to make a career change, plot a strategy and then work it, girl. As someone who has conducted lots of interviews over the last ten years (as the interviewer and the interviewee), here are some ideas to consider that might make your job search a bit smoother:

1. Keep your resume current so it reflects recent accomplishments. That project you were so proud of twenty years ago may be the highlight of your career but what have you done in the last three? Start thinking of examples you can share during interviews that highlight your achievements and measurable outcomes/positive results.

2. If your resume is in need of a major overhaul, i.e., you just don’t know where to start, search Amazon.com for resume writing books that offer the latest tricks recommended by top recruiters. Scan the web for blogs written by career coaches that offer guidance and powerful lessons from the trenches.

3. Stanch your desire for fancy formatting like underlines, color, bolding and clever bullet icons in your resume document. It will all disappear and revert back to Courier New or Times Roman font once it goes on line. Divert your need for ultra-formatting elsewhere to render greater results. And use spell check!

4. Checking newspaper want ads is so yesterday – at least if you really want another job – and better suited to line your cat’s litter box. However, the Sunday employment section can give you ideas about which employers are hiring or will have a booth at an upcoming career fair so you can scan their career pages.

5. Online is where everything happens, baby, and online (read, social) networking is queen. Register for online job search boards that focus on your discipline and meet your criteria and don’t limit yourself to just one. Yes, you may see duplicates but at least you know you’re being thorough in your coverage of what’s out there.

6. Also register yourself on LinkedIn, a social networking site for business professionals. Using its features I contacted existing people in my network to reconnect and let them know I was looking. Be cautious when using it for connections with those inside your current organization, however, or your boss may discover you’re looking while checking his/her own network. From the start I made it a practice to reserve LinkedIn for professional connections outside of my employer and used other methods to connect with those inside to minimize this potential conflict.

7. Facebook is not a professional networking site and ranks low in credibility among HR recruiters. Make sure you scrub your Facebook page so that it is appealing to potential employers when they perform an internet search of you. Do you really want them to discover how committed you are to playing Farmville???

8. Most job opportunities come to us through someone we already know. That’s why personal networking is so important. When was the last time you went to a dinner meeting to interact with others in your profession? If you feel uncomfortable – please note that we all feel a bit tense walking into a room of people we don’t know, even extroverts – make yourself do it a few times. With practice, it gets easier. Start the conversation off by asking about them and what they do. And those people who are strangers to you now? They’ll be familiar faces in two more months.

9. The first 30 seconds after we walk into an interview is critical and sets the tone for everything that follows. While young hot-shots with a stellar resume might get a pass for slouchy posture or a quirky giggle, we won’t get the same consideration. The only way to best them is to enter the room calm, self-assured and exuding competence, with a few hard copies of our resume ready to hand over, if requested.

10. You don’t have to color your hair if your natural color suits you (though softer shades are more flattering as we mature), but make sure your style is from this century. That means no heavily-lacquered helmet heads, no hair down to your waist and no mullets leftover from the ‘80s. Dark suits or well-fitting separates are always a good interview choice but add a nod to modernity with a pop of color in a watchband or a classy pin. And don’t forget to pull your shoulders back and stand up tall!

11. Makeup? It is a delicate balance between too much and not enough at this stage in life but I don’t know anyone our age who doesn’t benefit from a touch of concealer under her eyes, tinted moisturize to even out skin tone (preferably with SPF protection), a bit of mascara and some lip gloss. Pump up the mascara and add eyeliner if you wear glasses. And if your eyebrows are graying and/or thinning, go to someone who can show you how to shape and make them appear fuller, not drawn on. Groomed eyebrows imply vigor and energy.

12. Remember the days when we ached for enough years of experience to be taken seriously? All that experience we busted our derrieres to acquire may now be viewed by employers as a potential for high-maintenance or a crabby unwillingness to change. Interviewers are likely to be 10 to 20 years our junior so in the space of a 60-minute interview we must convince him/her of our capabilities and tech-savvy, our willingness to adapt to change without coming across as bossy or a know-it-all and highlight our ability to work successfully with younger staff. Are you tired yet? Well, take an oxygenating breath and get over it.

Once we secure a new job, the direction of the game shifts again. Instead of convincing the employer to hire us, we need to confirm how smart they were to snatch us up. If we revert back to our old, lazy habits, we risk them second-guessing their decision as they watch their sharp, seasoned new hire regress to the stereotypical narrow-minded old crank. Worse, it endangers the chances of future middle-aged recruits. It seems to me that we owe it to each other to fight that stereotype whether we continue to work or choose to retire. I’m just saying…

Have you been on your own job search path recently? What tricks or truths did you discover along the way? And what are you doing to stay fresh in your current position so you remain competitive in the world of work? Your willingness to share helps us all.

“Hi, this is Dr. X’s office.  We need to talk to you about your appointment for next Friday at 10:15 am.  We have a new patient starting chemo that morning and we’d like to reschedule you for another time that is convenient for you.”  As I jabbed the “Replay” key just to make sure I’d heard the message correctly, I thought to myself, This can’t be happening again! 

But it was happening again.  My oncologist’s office was calling for the fourth time in thirteen months to reschedule an appointment that I’d made three months in advance.  And it was the third time they’d done so to support the needs of another patient.  I was so angry my hand shook as I placed the phone back in the base. 

When I began active treatment in late 2006, sheer terror prevented me from understanding what my true role was in this little drama, and that it was bigger than just playing the part of the patient.  Thank God that my oncologist brought thirty-years of experience to our relationship.  There was no question about the seriousness of her commitment to the cause.  As the months of treatment passed, she steered me and Ed around the rocks and rapids of helplessness and back to the safety of the channel.  And I began to view myself as an active partner with her in the fight.  This same level of commitment was evident in her office team.   From the front desk receptionist to the lab techs and chemo nurses, they demonstrated care and concern in their interactions with their patients. 

Several months after I completed active treatment in 2007 my oncologist retired.  That’s when the culture of the office began to change.  The new oncologist, smart and more than capable, arrived on the scene to pick up the case load.  Savvy on the latest research, she’s someone to have on your side if you’re going toe to toe with cancer.  But at our first appointment she made it clear she didn’t have time to answer patient emails.

The loss of their wise and steady leader proved to be too much for the office.  One by one the existing staff left for jobs elsewhere.  Within two years the entire front office staff and most of the nurses and lab technicians were gone, replaced by new staff.  Gone, too, was the nurturing environment that made us, the patients, feel safe as we stared down a formidable foe.  

With nine locations in the region and more than thirty talented physicians, what did the corporate office do to support this group through a difficult transition?  To date their favorite response appears to be lots of hand-wringing and monitoring from afar, but no visible evidence of improvement.   

I realize there are times when doctors must reschedule existing appointments due to unexpected conflicts.  But I also believe those circumstances should be exceptions.  And what exactly is meant by the phrase, “…convenient for you?”  What is convenient for me is to schedule appointments far enough ahead so I can plan my work commitments around them…and then keep them.  When I’m asked to change an appointment a week before the date, it’s difficult to find an open spot (read “not convenient”). 

Perhaps I’m taking this too personally but it’s hard to forget that my previous employer terminated me because I was unable to maintain full-time work hours during treatment.  That felt pretty personal then and explains why I’m so reluctant to draw the attention of my current employer to repeated absences now, especially those on short notice.  It’s also inconvenient – and really annoying – when a staff member cheerfully asks me to address a postcard to myself as a reminder to call and make an appointment – and forgets to send out the cards.  (I’m still waiting for the arrival of the last card I filled out five months ago.)

Layered deep within the voicemail message is a sinister but silent insult as well: Now that you’re no longer in active treatment, your health status is not as important as a patient who is.  That may not be the message they intend, but I’ve heard it enough now to suspect their corporate culture supports this as an unspoken foundation principle.  I thought the whole point of treatment was for us to get better – and live.   That’s what I’m trying to do.  I have plenty of empathy for the new patient starting chemo, but he or she isn’t any more or less important than me.  We’re all important and I expect my doctors and their staff to reinforce that message by their words and actions rather than perpetuate its wrong-headed alternative.  

But what really crisps my crusts is this: what happens to the rights of patients who don’t speak up? Patients who don’t protest when their appointments are changed at the last minute.  Those so worn down from treatment and fatigue that they have no energy to fight for themselves.  Or the recent experience of a friend of mine: her doctor left her a message that he had the lab results she’d been so anxious to receive, then told her to call him back using the main office number. The phone system herded her through layers of automated choices that ultimately forced her to leave a message with an indifferent front desk staff person, not knowing if the doctor would get the message or how long she’d have to wait for a response.  At times like those, a delay of 24 hours can be agonizing.  What happens to them?  Who advocates for them?  Who has the guts to tell organizations like this that they may have won the clinical war by defeating the cancer, but untenable phone systems are for reporting cable service interruptions, not cancer patients.  Who will take the risk and tell them that the dismissive attitudes of their staff and doctors’ total lack of awareness about situations like these erode the confidence of patients at precisely the times they need it most – when they’re being diagnosed, in the middle of a long treatment cycle or struggling to recover and put the pieces of their lives back together?    

In this prohibitive office climate part of me wants to lay low and see how long it takes my doctor to notice she hasn’t seen me for a while.  But my heart tells me that a passive-aggressive maneuver won’t shine a light on the real problem.  Instead I’m channeling my rage and frustration into a protest letter to the director of the oncology practice.  I spoke to her about my concerns on the phone earlier this fall but now it’s time to put them in writing.  Here’s a bit of what I have so far: 

Please be advised that, effective January 2011, I’m changing to [another oncologist’s name] in the [new office name] of your practice.  Since our telephone conversation in early September when I shared my service concerns with you, I’ve received yet another request to change a long-scheduled appointment in order to serve the needs of a new patient.  My hope is that some of the issues I’ve experienced will be resolved with the change to another physician and office. 

However, it’s clear there is work to be done to improve the quality of support you offer to all your patients, not just those in active treatment. To that end I encourage you to consider the following recommendations:

• Closely examine existing procedures and processes and survey the patient population in your offices to confirm the presence or absence of patient-centric practices.  Then develop an action plan to address survey findings and measure and monitor improvements.  Meet periodically with a cross-functional leadership team of doctors and staff to evaluate progress against expectations and identify the need for any mid-course corrections.
• Office staff and systems need to facilitate communication between doctors and patients, not hinder it.  Give doctors their own direct line numbers and email accounts so patients and doctors can communicate directly.  This also streamlines the communication process by omitting the step where office staff take messages and relay them to the doctors, an outdated practice that harkens back to the previous century and is rife with potential for errors and inaccuracies.  If patients call the main number with a detailed message, staff can forward the caller directly to the doctor’s voicemail.
• There is no excuse for sloppy scheduling practices.  Block dedicated times every month for new patients and direct staff not to schedule in those blocks rather than pressuring existing patients to change their appointments for another patient.  And open physicians’ schedules for three months at a time so that “maintenance” patients can make appointments well in advance.  Once made, consider those appointments sacred barring the isolated, unexpected emergency.
• All patients, no matter where they are on the treatment continuum, are important.  Doctors and office staff alike must be held accountable for exhibiting that belief system in every patient interaction whether it’s an office visit, phone call or voicemail message.  And doctors should be trained and encouraged to provide meaningful, constructive feedback when/if they observe office staff members not treating patients with the appropriate level of care and concern. 
• Train staff on appropriate verbiage for particular tasks and help them identify what is and is not appropriate.  Reward doctors and staff for giving each other meaningful feedback when they observe desirable vs. undesirable interactions with patients. 

If the quality of my interactions with my new doctor and office staff do not improve, I’ll have no choice but to move to a different oncology practice.  I realize that I am only one patient and the loss of my business will not place a strain on your practice.  But my hope is that these suggestions, offered in good faith to improve the service level for all, will inspire the senior management team to recognize that treatment of cancer patients – to include those who appear to be cancer-free – doesn’t end at the cellular level. 

What about you?  Have you met with challenges like this in your own cancer saga?  Do you think patients should speak up or stay silent?  Share your comments below.

Anxiety starts promptly for me on December 1st. It isn’t just the economy, the ongoing threats to world peace or the chronic incivility that hangs over Washington. It’s because Christmas has become a burr in the seat of my December. The music, the spiritual messages of hope, the lights and beautifully decorated trees – they still hold magic for me. But “Christmas: The Event” has evolved into a string of over-hyped activities crammed full of expectations so daunting that Martha Stewart seems more at risk than ever from her glue-gunned wreaths and sugar-spun desserts. Simply stated, the performance anxiety freaks me out. Just this weekend I clicked past yet another HGTV special demonstrating how “you can wrap each gift so that it dazzles the recipient before it’s even opened!” Meanwhile I’m thinking the recipient should be grateful it’s wrapped at all. How’s that for slapping the ho-ho-ho out of your holiday spirit?

For years we sent out piles of hand-signed Christmas cards to friends and family with a newsy yet amusing holiday letter tucked into each one. I baked and decorated elaborate cookies, giving plates of them to neighbors and serving them to visiting friends. We decked the house with ribbon and holly inside and out and spent hours shopping for just the right gift for everyone on our list. At some point I lifted my head up long enough to discover that the joy of the season I wanted so eagerly to celebrate was being edged out by a too-long list of “shoulds.” And I was tired.

It was time to defrazzle my holiday. So a few years ago I made a personal commitment to embrace the less is more ideal. That sounds exemplary, perhaps, but it’s a struggle every year. Recidivism is an evil temptress and her specialty is guilt. And she’s bossy! Even now as I page through the latest issue of Bon Appetit she whispers: “Dog-ear that recipe for chocolate peppermint sprinkle cookies. You can make them this weekend. And if you do it now you’ll even have time to send them off to family.” Or at the end of a long, exhausting day: “Why aren’t you stopping at the garden center to pick up garland and outdoor ribbon for the front porch?” But each year I grow more skilled at tuning her out and channeling the guilt about what I should be doing into more productive endeavors (like going for one entire weekend day without making a checklist).

So in the spirit of good will toward over-scheduled, harried men and women, here are some solutions I’ve come to depend on to ease my season of disquiet:
• When the desire to whip up a batch of cookies strikes, I take a nap until it passes!
• True, we can’t hang them on our tree by a golden ribbon or save them as keepsakes. But if the thought of signing seventy-five cards and addressing their envelopes is just too much to bear, email Christmas cards can be a viable alternative. To hell with the guilt!
• Multi-purpose decorations are our friends. This year I nixed the standard drape of garland and lights around the fireplace and layered candles, feathers, pinecones, a few (fake) evergreen sprigs and berries across the mantle instead. If I get really ambitious, I may toss in a bronze-gilded bow or two. But that’s it. Now the whole mass can stay up there until spring.
• Online shopping is one of my favorite holiday rituals. We still find special gifts but they arrive at the front door with mailing labels for returns. And we aren’t stomped on by pushy shoppers, ignored by clueless sales people or our car bumper dinged in the parking garage.
• On weekdays Ed and I try to find time for ourselves, even if we get home late. I whip up something quick (the secret is a well-stocked pantry; Real Simple has great recipes and corresponding shopping lists) while Ed sets the table and lights the candles.

These suggestions aren’t foolproof but they work for me (although I still worry about the economy, world peace and incivility). Maybe you’ve come up with creative ways to outmaneuver your own holiday stressors. The big question is this: are we spending time in activities that really matter to us with the people we love most?

On Sunday night as Ed and I lounged by the fire, sipping hot buttered rum* and listening to Christmas music, I realized that, for a few moments at least, this is the kind of holiday season I’ve been dreaming of… Merry Christmas, everyone! I hope you have the kind of holiday season you dream of.

*MWQ’s Hot Buttered Rum (2 servings)
Heat two cups of apple cider (unsweetened) in the microwave for 2 minutes. Meanwhile, in a small bowl mash 2 tablespoon of softened butter into 2 tablespoon of packed brown sugar and add several healthy sprinkles of ground cinnamon. Divide butter mixture between two large mugs. Pour a shot of golden rum into each mug then pour in the hot apple cider. Stir and enjoy.

I once read that during the Cold War really good secret agents could change their appearance in public without anyone noticing. That fact alone confirms for me – and those of you who might be wondering – that I am no secret agent. I can’t even change a simple article of clothing in the privacy of my closet without ending up trussed like a turkey and the solution to my entrapment seemingly out of reach.

Ed was out of town the first Saturday in October, so I donned the dress I’d purchased for my daughter’s upcoming wedding to critically examine my reflection in the full length mirror mounted on the wall in our closet. Creamy coffee taffeta – check. Modest neckline bedecked with amber and mocha crystals, nixing the need for jewelry other than simple crystal earrings – check. But what were those Michelin-man rolls around my waistline? I didn’t remember seeing them when I stood in front of the department store mirror!

I needed a smooth line from hip to bust, and I needed it now. You know where I’m going with this…it was time for a Spanx intervention. For the uninitiated, Spanx are a line of undergarments made from a miraculous, high-tech fabric that defies the laws of physics and transforms us from lumpy to hourglass. Smooth curves that don’t suffocate the wearer or cut off circulation to vital organs. I set off on an emergency trip to the mall.

An hour later I was back at the same mirror in my underwear, eagerly tearing open the Hide & Sleek Cami package. It emerged looking…tiny. Barbie doll tiny. But if it was my actual size, I reasoned, how would it smooth my bulges? I jammed my hands through the arm holes and pulled the garment over my head. My eyes cleared the v-neckline but the leading edge of the fabric stopped moving once it reached my armpits. I tried pulling up. I tried pulling down. Nothing I did would free me from the constriction that extended to well above my elbows and pinned my arms straight up over my head.

Panicked, I thrashed about for another minute – a frenzied animal trapped in a net – until I finally collapsed on the carpeted floor of the closet like a limp piece of celery. As I lay there panting, viable solutions to my predicament grew bleaker. Even if I could get past the embarrassment of asking a female neighbor to come over to extricate me, how would I make the SOS phone call with my hands bound above my head? The mere act of standing up was a risky maneuver that required me to roll over on my face and throw my weight backward until I could balance into a kneeling position. Once vertical, my hands grew numb: useless appendages that flapped about wildly without purpose.

That’s when I remembered the front door was dead bolted from the inside. None of the neighbors who were home that weekend had a key. Ed wouldn’t be back for at least another twenty-four hours. I pictured him walking into a dark and silent house Sunday night, calling my name and creeping cautiously upstairs to our bedroom as he followed faint whimpers emanating from the closet…

No! This was not going to be my fate. I was an intelligent woman. I could out-think fabric. I just needed to stop this frantic, mad-woman struggle against the ties that bound me.

I resumed my prone position on the floor and initiated the deep breathing technique I’d learned in yoga class. Once calm and focused, I began to think of myself as very small. Smaller than the Barbie strait jacket. Centimeter by centimeter, I was able to pull my right arm down below the constriction of material. Free at last.

On the big day a correctly-sized Cami sculpted those spare tires round my middle without incident. Golden sun shone down on the happy couple and their guests as our lovely daughter glided down the aisle on Ed’s arm. A beautiful start to their new life together.

What lessons did I glean from my “unfortunate Spanx incident?”
1. Operator error is not the fault of the manufacturer, i.e., in future make sure that I carefully read the sizing chart on the Spanx box and verify that I bring home that size rather than one that is too small and will restrain me.
2. Resume a regular schedule of tummy crunches so my core muscles can take on the day-to-day job of girdling instead of relying on an array of expensive undergarments. (Sigh.)

But there remains another annoying life lesson that refuses to be ignored. For thirty years I struggled frenetically against forces I couldn’t control (like so many wrongly-sized Camis eschewed by secret agents everywhere!), hell bent on making life happen my way and on my time schedule. I wish I could get credit for all the energy I wasted pushing, pushing.

Over the last few years I’ve noticed that when I ease up just a bit on that deep-seated urge to push, there’s much less of a drain on my Sturm und Drang account. And I often see equal or better results. Maybe true maturity means knowing when to stop struggling and start deep breathing – just until good sense has the chance to kick in.

October 2, 2010     

I never expected to get breast cancer. Being an oncology nurse falsely led me to believe I’d be granted some special immunity. Of course that was only wishful thinking.

In 1992, at the age of 38, I was diagnosed with breast cancer and I became the cancer patient. Receiving the news that I had multiple tumors in my breast meant mastectomy surgery, but due  to other medical problems I would not be a candidate for reconstruction.  Another blow to my self-image and psychological well-being.

Our 12-year-old daughter, Laura, provided me the inspiration to endure and learn that beauty is within us and not what fills the inside of a 44D bra. My husband, Al, and I believed we’d taught her the importance of finding the good within people.  Little did we know she would become our mentor for this very significant crisis in our lives. She even wrote me a poem about how beautiful I, and others, were in her eyes.  It was a heart-felt experience to know that we had, in fact, taught her well.

Laughter became an ally in my fight, and still is to this day. What we didn’t anticipate was Laura finding that same sense of humor.

“Will the doctor let you bring your breast home to keep?” she asked.  “After all it isn’t his; it’s yours. You can keep it in a big pickle jar on the mantel.”  I told her that I didn’t think it would make me feel better to bring it home and hoped that researchers at the hospital could examine the breast tissue with the hope that other mommies would not need this kind of surgery in the future. (I did ask my husband, Al, for his opinion though. Let’s see, his deer’s head, his blue fish, my 44D in a pickle jar… His first concern was that there wouldn’t be a jar big enough to house my breast.)

When Laura asked me if the doctor would relocate my remaining breast to the middle of my chest, I told her that this wasn’t in the surgical plan.  She was concerned that if he didn’t I’d tend to list to the right when I walked.  Passing up the opportunity to be Ms. Uniboob with a breast strategically placed in the center of my chest, I wore a breast prosthesis inside of a mastectomy bra instead.  

Laura also liked the idea that the bra would not only hold the prosthesis in place but could also be a great place to stash money I got out of the ATM machine on my way to the grocery store. I wasn’t confident this was a good idea, although my husband thought that it would guarantee a spot in the express line as soon as I started to reach for my cash to pay the check-out clerk. What Laura did was help us find our sense of humor.  Al and I made a pact that we would find something funny about the fact I had been diagnosed… and we still do, 18 years later.

I sent out adoption notices to my best friends that I had gotten “Betty Boob,” my breast prosthesis. After all, she would be my bosom buddy and I would take her everywhere I went, so she deserved a name. One friend mailed her a gift—a ceramic Christmas ornament in the shape of a baby bottle. Inscribed on it were the words: “Betty Boob’s 1^st Christmas, 1992.” We keep it displayed in the living room year round—a welcome substitute for my breast in the pickle jar.

In 1994 when I again heard those words, “You have breast cancer,” Betty Boob got a roommate: Bobbie Sue. We actually called family and friends to tell them that Betty was getting a boobsy twin rather than saying I had to  face a second mastectomy. It became an effective way to neutralize the discussion about cancer, too.   People hesitant to talk with me about my medical situation were comfortable asking, “When does Bobbie Sue arrive?” (meaning, when is your mastectomy surgery?)

My personal experiences with this disease and my passion to help others quickly made me want to spend my time 24/7 with breast cancer patients. I began volunteering for the Breast Center at work during my off hours, and quickly felt my spirits soar as I witnessed women’s anxiety subside when I told them, “I know how scared you are. I’ve sat where you are sitting, twice. We will weather this storm together.”   After three years of volunteering 24 hours a week in addition to my regular 50 hour nursing job, I transferred to the Breast Center and assumed the Director’s position in 1997.

Am I as good as my word about doing this 24/7?  Just ask my family. I serve on 16 different medical advisory boards for breast cancer, cofounded a national nonprofit support organization called Mothers Suppporting Daughters with Breast Cancer and spend most of my weekends speaking on the subject.  I’m  constantly trying to think up better ways to make treatment the least physically and emotionally traumatic as we can for people who  hear, “You have breast cancer.”

I respond to more than 200 emails a day on our website from women across the country, even some from the Middle East and other parts of the world: women who are newly diagnosed and scared or dealing with breast symptoms and they’re worried they’re going to hear the dreaded words.  So I’m privileged to be in many people’s lives and their families’ lives, though often those I help online I’ll never actually meet.

Others contact me wanting to know how much time they have left since their doctor isn’t telling them.  They know by the advanced stage of their symptoms that their metastatic disease is going to take them from their family soon.  But how soon? There is no way for me to know but I try my best to guide them through what to expect,  how to achieve closure with their family and ensure their affairs are in order.

Emails also arrive from teenagers, like the one who has found lumps and bumps in her breasts.  She’s scared she has breast cancer because she has become sexually active, and she thinks that having sex in the backseat of a car with a boy fondling her may have caused it to grow.  As a mother I’m tempted to tell her “Yes, this is the cause, having sex before you should be,” but I resist that temptation.  She is likely experiencing the hormonal changes associated with being a teen.  So I encourage her to talk with her mom about safe sex, the responsibilities of having sex, and that someone touching your breasts won’t cause you to get breast cancer.

We see and treat more than 800 newly diagnosed breast cancer patients a year at Johns Hopkins. Still, each patient is unique, with her own fears, her own family dynamics, and her own dreams of overcoming this disease. It truly is humbling to be allowed to be in the lives of each of these individuals.

Seven years ago I was finally given the opportunity to have breast reconstruction. I wore signs underneath my hospital gown into the operating room that said, “I’m here for a front end re-alignment. Please supersize me.” And “Dear Santa, thanks for bringing me cleavage for Christmas.” Now I have “the girls.” I hope one day to learn ventriloquism so that my breasts can speak to the public and inspire women to get mammograms, do breast self exams and get clinical breast exams.

I yearn for the day there will be a cure for this disease. Until then, I’m helping whoever needs me to help them fight their battle. My experience and being with them is a gift.  A privilege. I wouldn’t trade it for anything.

[Lillie Shockney is the administrative director of the Johns Hopkins Avon Foundation Breast Center.  To read more about Lillie and her leadership in the fight against breast cancer, click here.  Thanks, Lillie, for your guest blog, and for being such a passionate torch-bearer for our side!]

But two hours later I’m unzenned and back to where I was before class: grieving over the hurt of a recent injury. In the three and a half years since my cancer diagnosis I’ve received innumerable demonstrations of kindness from friends, family and neighbors. Cushioned by all that loving support, I allowed myself to believe that the world really understood that a cancer diagnosis is life-altering, even when you’re a survivor. I forgot how deep the cut from a thoughtless remark can be. That’s the only explanation for my dumbfounded response to a recent comment from someone close to me – someone I loved and trusted – and how slow the wound is to heal.

Most of us in the cancer ‘hood learn pretty quickly that the question, “How are you doing?” is merely a social nicety and not an invitation for us to launch into a litany of the ways cancer has kicked the doo-doo out of us. We know – it’s gloomy – and a sure-fire conversation buster with “non-hoodies.” (Although running down the doo-doo list can be a clever technique for ridding yourself of annoying party guests who refuse to go home at the end of the night.) But usually there are a select few with whom we feel safe enough to offer observations about our experience, just as anyone might share thoughts or impressions about the birth of a child, the death of someone dear or another event that forces a major change of course in their life.

Unfortunately, it is those supposed safe havens where we may find ourselves at greatest risk. Viewing us from behind the bastion of their limited understanding, spear carriers of truth chuck their flinty weapons, unconcerned about the emotional injury they might inflict. And if we possess the temerity to protest or even explain, they accuse us of being too sensitive.

With almost 200,000 women receiving a breast cancer diagnosis every year, it’s clearly time to step in and reboot the hard drives of the entire clueless population. To get this massive intervention started, I offer MWQ’s Top Five Statements to Avoid plus some spirited commentary as a bonus. If you’re a member of the currently clueless club, consider these whenever you’re hangin’ with your local cancer ‘hoodie.

Number 5. “I didn’t contact you [insert timeframe, i.e., after I heard about your illness, for six months, etc.] because I didn’t want to bother you.” Go ahead – bother us. Cancer treatment can mean lonely isolation, often for days or weeks at a time. Phone or leave a voicemail. Send a card. Email. Give us some signal that we’re not forgotten. Feeling like our existence doesn’t matter or our presence isn’t missed while everyone else goes on with their lives can feel worse than the illness itself.

Number 4. “That was three years ago. You’re done with all that now, aren’t you?” What exactly do you mean by “done?” Is that code for everything is back to normal? Chances are the answer to your question is “Not exactly.” Once active treatment is complete, many survivors live with a vague, underlying fear that their cancer might come back. Cancer survivors have a greater risk of recurrence or developing new cancers. And physicians no longer use the term “cured” when they refer to patients who go five years cancer-free. Would you call that “done?”

Number 3. “You should be grateful you don’t have [insert a more “serious” type of cancer].” Raise your hand if you’ve received a cancer diagnosis and the word “grateful” popped into your mind. Um, no one? Here’s a thought you might want to consider: The words “grateful” and “cancer” are unlikely to coexist so what the heck could you be thinking when you deliver a statement like this?

Number 2. “Here we go again. Is cancer going to come up in every conversation we have from now on?” (Favorite alternate: “You’re not going to play the cancer card again, are you?”) This response indicates a stunning lack of awareness about life-threatening illness and the long-term physical and emotional toll it takes on its victims. For many of us, life after cancer is never as it was in ways too onerous to list or too personal to share. Granted, as ‘hoodies it’s important that we not evolve into whiners. But talking about it can be a healthy way to work through what is happening to us.

If you can’t listen any more, assuming you’ve made an attempt to listen at all, you might gently suggest that your ‘hoodie see a professional counselor to sort through the tangled knot of fears and doubts or join a support group. (You get extra points if you do some research on your own and offer names and contact information.) Just don’t use our willingness to talk about our feelings as a weapon against us. It’s mean-spirited and rates right up there with kicking defenseless animals and scaring children.

And MWQ’s Number 1 Statement to Avoid: “Now you’ll be just an ‘it.’” This nasty little gem was delivered to a breast cancer patient by her own mother after the patient was told she would also need a hysterectomy. Losing a breast or two with a side order of baldness from chemo is enough to make any woman question her femininity, and I would expect the patient needed no help taking another step in that direction – even before her mother nuked her. My guess? The mother moonlights as an ax murderer.

Even those who are close to a friend or family member with cancer can’t fully appreciate what it’s like. A former colleague, now a survivor herself, confessed to me: “I thought I knew about breast cancer treatment and recovery because I’d been with my sister when she died [from it]. But I was shocked and angered by what I didn’t know when it happened to me. ”

So let’s just cut to the end of the movie: we had (or have) freakin’ cancer and some days it’s hard to know which is more painful: the treatment and frustration with the long-term side effects, or the specter of cancer paying another visit. But a close runner-up is the frightening prospect that people who we thought were in our corner may not be. If you find yourself unsure about what to say when someone tells you he/she has or had cancer, here’s a clue: Avoid any variations on the list above, and simply say, “I’m sorry. And I’m here.” Then stop – and listen. You might just learn something.

A snarl of angry frustration at the house wrenches my heart. How can it be so blind to the obvious? Things are not the same as they were four days ago. Ed’s Mom is dead. We saw her lying in the casket on Friday night in her birthday dress with the sparkly earrings, and yesterday we buried her.

Struggling for equilibrium, we simulate normalcy but our movements look odd, like we’re in a video playing in slow motion. We unpack the car. I fill the bird bath in the front yard with fresh water. Ed unloads the dishwasher. We sort through the pile of mail. Cards from friends and family deliver a temporary stay from the pain but once we finish reading them it roars back with fury.

The sensation of hurt breaking through dizzying numbness reminds me of the days following the deaths of our fathers. This time we know what comes next, but the finality of eternal silence is still hard to take in. No more tales to chronicle her life. No more chances for my husband to hear his mother call him “Eddie.” No more fervent prayers for a painless and peaceful end although, blessedly, she slipped away quickly.

Tomorrow we’ll drive to work, settle into our chairs, take phone calls, answer emails. When people ask we’ll tell them we’re okay. But we will not be okay. Inside our hearts will be aching. And normal life will be a cruel intrusion on our grief.

Joining me and Ed were my wonderful, “I’ve always got your back!” brother Scott, my beautiful daughters Chrissie (with her boyfriend Mikey) and Cyndi (with her fiance, Ray), my dear friend KT and her sister, Susie, our way-cool neighbors and friends Jody, Troy and four-year-old Louisa (who first “walked” when she was a mere five months old!), my writing buddy Kristina and her fiance, Scott,and my amazing work buddy, Judy. As we converged on our meeting place on the National Mall, the sun was just starting to peek out from behind the dome of the Capitol building. Soon it was time to hit the streets.

There were even more runners and walkers this year – we’re guessing a total close to 50,000. We walked for Queens who are still active in the fight – like Barbara, Patty and Joannie (and you know you’re in my heart, Marina!) – and made friends with new Queens. It was hot and we were sweaty but the mood in the crowd was jubilant and our team cheered as we crossed the 5K finish line together. It was a day to celebrate family, friends and our love for each other.

There are so many who have willingly chosen to walk down this post-cancer road with me and Ed. Know that we never forget how special you are to us and how lucky we are to have you in our lives.