Independence Day: New Blog Title Debut!

At the party with friends Cheryl and Brigitte

Yesterday was Independence Day in the US, typically celebrated with cookouts, parades, and fireworks. Steve and I have an annual tradition of attending a pool party thrown each year by a hiking friend, Jeff, and his wife. They grill hotdogs and hamburgers, everyone brings a dish to share, and we sit outside in camp chairs (or inside if it rains) and occasionally take a dip in the pool. Jeff always takes lots of fun pictures, and it’s a great afternoon spent with friends.

At last year’s July 4th party, Steve and I were still trying to get our heads around my recent diagnosis; it was so recent, in fact, that we’d told a few of our friends, but not yet all. I had an appointment on July 7th to get my port surgically implanted, and my first chemo was set to begin on July 8th. I remember feeling strangely calm—I managed to talk with some of the friends who knew what was happening about my illness without ever crying. But it was hard to feel genuinely celebratory, anticipating a year whose few certainties included pain, grief, and loss. It didn’t feel much like freedom, of any kind.

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Rose bouquet

This year felt much different. Two weeks out of my last major reconstructive surgery, I’m doing well and feeling stronger each day. This year’s Independence Day was marked by a return to a sense of personal independence, of healing, hope, and looking forward to regaining health and strength. My friend Cheryl surprised me with some beautiful roses, a happy acknowledgment of a day that had more significance than even she may have realized. There’s still a long road of recovery yet to travel, but I’m so grateful that this holiday, my struggle was trying to get my head around just how much can and has transpired in a year. I am once again free from cancer. It feels like a whole new world.

So, in honor of Independence Day, I’m making the name change of the blog official: Still Life, Beyond Cancer. As some wise friends have pointed out, I may wish to make still another change in the future, as I continue to heal and my world shifts and changes further. For now, I think the word “beyond” acknowledges both my cancer-free state (hooray!) and the fact that the physical and emotional effects of this past year still affect me daily. I hope that continuing to tell my story helps others who are themselves survivors or who know and love survivors.

Cheers!

Survivor: sur– referring to beyond, in addition to; -vivor as in vive, life. There’s life beyond cancer, something I’m thankful for each day.

Over the next week or so I’ll be updating some of the images on the site, too, to reflect the change visually. Now that my last major surgery is complete, I hope to resume a weekly posting schedule in the near future as well.

As always, thank you for reading, and stay tuned!

And—better late than never—cheers to freedoms of all kinds, to (re)gaining independence, and to those fighting for both.

 

 

Mountain Meditation: The Climb Down Begins

On Tuesday evening, June 13th, I went on a silent meditation hike with a few friends to commemorate the anniversary of my diagnosis. The hike was my friend Sarah’s idea; after reading my post “Climb Every Mountain,” she suggested that hiking down an actual mountain might be a good way to mark the end of the year-long uphill climb of diagnosis and treatment, and honor the path of ongoing recovery I’m on now and will be for a while: the (metaphorical) climb down.

Sarah and I planned to start at the top of Mill Mountain, and two friends would begin at the bottom, meet up with us on the trail, then turn back, and together we’d hike the rest of the way down. Two more planned to meet us at the bottom. I also carried several notes from friends and loved ones in my pocket, who’d shared words such as “hope,” “grace,” and “serenity,” and wishes for the coming year.

Sarah and I visited the overlook at the summit before we started down. I was almost moved to tears to see the sunset. Last year, Steve and I spent a few anxious days at the beach waiting to find out whether or not my cancer had metastasized. As I walked on the beach the first evening, the sun shone out from behind a dark cloud, its rays forming a kind of halo. In that moment, it felt like hope. As Sarah and I stood at the top of Mill Mountain, the sun once again shone its rays from behind the clouds. It felt like coming full circle.

Then Sarah noticed a smiling, shining sun painted on a rock that someone had left on the overlook sign. It was from the “Kindness Rocks” project. I snapped a picture and left it there to bring the next person who spotted it a smile.

At the trailhead I said, “Here’s to a new and different kind of year,” and then we started down in silence.

The metaphor is almost too easy; it practically writes itself. Much of the trail was rocky, though there were also smooth stretches, times when it was easier to look up and really take in the woods surrounding us. Some parts were wide and almost flat; others narrow and crossed by root-tangles. Once the trail jackknifed so hard to the left I almost missed the turn and became disoriented for a moment. One of my friends had to point the way. I walked in front, and there were times, especially when the trail grew narrow and steep, when I felt as I walking alone. But I knew I could just turn around and see people I loved were there, always behind me.

The downhill was relentless, and more than once I thought, “I didn’t think this trail was this long.” I also looked up at the slope we’d descended and thought, “That’s one big mountain. And I actually climbed it.” Metaphorically, vis à vis the physical Mill Mountain; literally, the mountain called Cancer.

At the start of our hike I mostly heard leaves rustling in the breeze, the soft thuds of my feet on the trail. In the middle I became aware of cars passing on the nearby road, the world outside the forest going about its business, unaware of our walk in progress. The closer we got to the bottom, the more birdsong I heard: owls hooting, wood thrushes whistling and trilling.

I stopped a few times to rest my cranky knees, to listen, to look. I saw a piece of glass on the trail and left it there because it wasn’t safe for me to pick it up and carry it; in my mind it represented worry, the thoughts and fears that can rob you of joy in the present. When I saw a golden glint, I bent down to investigate and found a tiny golden charm. I turned it over to see it read “create.” I laughed and put it in my pocket, thanking the Universe for the reminder and encouragement.

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At the bottom Sarah said some beautiful words: “In all the noise of living, remember the silence. And in the silence hear your soul’s voice. In all the rushing of living, remember the stillness. And in the stillness feel the pulse of life. In all the living of life, remember the dying. And know in the dying there is new life.” I had gone through a kind of death in the last year, she said, and now I was emerging, stepping into a new life, a new start.

There were hugs shared all around. I wanted to say something eloquent, too, express how much the love, kindness and support of my friends and family has meant, somehow capture all the ways my heart has broken and mended and split wide open in the hardest and most wonderful ways this year.

In the moment I squeaked out a teary “thank you.”

Two words that contain multitudes. Maybe, sometimes, “thank you” is enough. Sometimes, maybe, it is everything.

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Thank you to all who voted on a name change for the blog, and for the thoughtful suggestions that I consider a title without the word “cancer” in it at all. The clear preference (at 85%) of the poll choices was “Still Life, Beyond Cancer.” While I’m still on the mountain, as I will be for a bit, I think that title fits—but the comments have made me think about entertaining another name change in the not-so-distant future that reflects moving beyond even “beyond.” Thank you, dear readers and friends.

Tomorrow I’m scheduled to undergo my final major reconstructive surgery. I’ll be reporting soon on the new bionic boobs (an improvement, I hope, over the tissue expanders, also known as “bricks in your breasts”), and sharing more stories, resources, and fun hats. 

New Beginnings: One Year Post-Biopsy

Today is the one-year anniversary of my biopsy.

I had big plans for the blog these past few weeks: a post about anniversaries and milestones, a post about a coming name change, another capturing the weird world of living with tissue expanders (among other things, I now have a superpower: my boobs can predict weather changes). But then I got walloped with the respiratory virus/sinus infection/germfest from hell, and instead of writing prolifically, road-tripping to a concert, and enjoying daily walks on the local greenway, I’ve spent the week in a state of anxious exhaustion, worried about how long I’ll be sick, and angry that all my plans have been derailed by unexpected illness.

It’s a strange throwback to this time last summer.

I’ve been thinking a lot about markers and milestones lately. I attended my twenty-fifth college reunion back in April, and at our class meeting on Saturday morning, we went around the room and heard an update on everyone’s lives. As I thought about what to say, I realized just how eventful—and if you’ll pardon the cliché—what a crazy roller coaster ride the last five years had been. In the time between my 20th and 25th college reunions

  • I walked away from an on-again, off-again relationship that wasn’t working;
  • Met, fell in love, planned a wedding with, and married my now-husband Steve;
  • Created and wrote a regular blog about being a forty-something first-time bride;
  • Bought a new house with my new husband and moved for the first time in ten years;
  • Lost two beloved cats;
  • Acquired two wonderful stepsons (and saw both graduate from college and get settled into their first apartments);
  • Acquired a dog-by-marriage and a new cat with the new house.

That was between April 2012 and June 2016. From the last year alone, add

  • Got diagnosed with breast cancer;
  • Underwent chemo and radiation treatments;
  • Had a bilateral mastectomy;
  • Created and wrote a regular blog about having cancer;
  • Completed treatment and was declared cancer-free.

And that’s just the short list.

It’s been, shall we say, a lot to absorb.

What’s in a name?

So, as my final major reconstructive surgery approaches (nine days and counting), I’ve been thinking about how to recognize the shift—the end of a year of illness and treatment, the beginning of healing and long-term recovery—here on the blog. Language is powerful, and “Still Life, With Cancer” no longer accurately reflects the state of my body, and I think it’s important to reinforce my cancer-free status in my mind.

I’ve been considering several different alternatives. My first thought was “Adventures in Cancerland,” fitting for several reasons. It makes a nice literary allusion to an alternate world full of surprises and absurdities, and I suspect most of us who’ve come to inhabit Cancerland would agree that a diagnosis feels very much like diving down the proverbial rabbit hole. And while I no longer have cancer, I still feel as if I am in Cancerland, with more surgery ahead, ongoing side effects from treatment, and the fact tripping over my own mortality has changed my experience of the world forever.

Apparently, I’m far from the first to have thought of this comparison, as the title has been used, more than once. I could do a slightly different iteration of it, or add a “my” or a “further,” but that triggers resistance in my gut. I don’t want to “own” Cancerland so fully at this point, and I definitely don’t want any “further” adventures beyond recovering from this one. So I think that one’s out.

I also considered another allusion, “The Cancerland Diaries,” which seems accurate enough, and pays homage to a writer I much admire, David Sedaris, author of The Santaland Diaries. Sedaris is also a chronicler of moments of absurdity and surrealism that are only too real. But I’m not as funny or biting as Sedaris, so the echo may not be entirely apt.

I could keep it simple with “Still Life, After Cancer,” which is clear and accurate, but perhaps belies some of the complexities that remain even after being declared free of the disease. Since I kept coming back to the titles that evoked how surreal the whole year has felt, my inner nerd was compelled to look up the etymology of the prefix “sur.” According to the Online Etymology Dictionary, “sur” derived from the Latin super, the root of the Old French sour or sur, and means “over, above, beyond, in addition.” It also has a nice connection to “survivor.” That led me to consider one more possibility: “Still Life, Beyond Cancer.”

The current URL will still take the reader to my blog, so no one else need remember the new name, unless inspired to do so. But I am curious, dear reader: what do you think? I’d love to have your input, via the poll below.

In the meantime, I’m resting up, taking antibiotics and cough syrup, and repeating to myself—as I have so often this year—“This, too, shall pass.” Here’s to reporting on a happy and healthy five years at my 30th college reunion.

Here’s to the Husbands and Partners

caregiverOn October 31st, 2016, then-President Barack Obama made a Presidential Proclamation declaring November “National Family Caregivers Month,” honoring “those who give of themselves to be there for their family, friends, and neighbors in challenging times.” At the time, I missed the announcement, still in a pretty pronounced post-chemo fog of pain and fatigue. And I was especially distracted that week: on November 1st, I was scheduled for a post-chemo mammogram and ultrasound, followed by an appointment with my oncologic surgeon to review the results of the scans, which would tell us whether or not chemo had been effective. November 1st was also hubby Steve’s birthday. When we’d met with the oncologic surgeon pre-chemo to talk scans, the news had been tough, so we’d held off scheduling any birthday festivities for the evening, just in case.

Though anxious, we were hopeful, and thankfully, the news was good. Still, I felt guilty, filling Steve’s birthday with yet another set of medical appointments. He’d been right by my side for most every single doctor’s visit or test since June, whether surgical consultation or CT scan or hours-long chemotherapy treatment. Going to the doctor isn’t much fun even when it’s your own body you’re trying to heal, and a sterile medical office with outdated magazines definitely does not scream “birthday party.”

My Sweetie Pi
My Sweetie Pi

In his proclamation, the former President lauded the “incredible generosity” of family caregivers, a description that itself seems almost not generous enough for the reality of spouses and partners of women with breast cancer. Along with accompanying me to appointments, Steve has driven me to offices and errands near and far, waited patiently, lent a second ear, helped me manage the information overload. He’s taken on the bulk of the household chores. He’s held me when I needed to cry; he makes jokes so I don’t forget to laugh. He’s encouraged me to take naps and go on walks, and he’s fetched my prescriptions and the occasional Coca-Cola Icee whenever I craved one. After surgery, when I was especially unsteady, I took over his bathroom because the shower there was easier to get in and out of. Meanwhile, he slept on a mattress on the bedroom floor for a month because I needed to keep the head of the bed elevated to prevent tangling my drains.

And speaking of drains, he gently, and diligently, stripped my JP drain tubes each morning and evening, without batting an eye, kneeling by the bedside, eye level with my bruised, scarred, and misshapen chest. Seeing my altered landscape must have been weird for him; I mean, it was, and is, weird for me. Yet Steve has never let on that he’s bothered by the changes in my body. (Okay, he admitted he was a little grossed out by the stringy chicken-fat-like gunk that occasionally showed up in my drains, but—so was I. Major yuck.)

I think it’s safe to say Steve has gone above and beyond. Seriously: this is a man who let me demonstrate the discomfort of my tissue expanders by allowing me to reach around his chest from behind, grab his pecs, and squeeze as hard as I could.

Maybe once you’ve made your vows and declared “for better or worse, in sickness and in health,” it’s just expected that you’ll be fully present for your partner in a medical crisis. But I don’t think a spouse’s ability to be a good caregiver is a given, and I don’t take my husband’s compassion or support for granted.

Obama opened his proclamation honoring family caregivers with the observation that “[o]ur nation was founded on the fundamental idea that we all do better when we look out for one another.” And so we do. So here’s to all the husbands and partners, who drive us to appointments and do all the dishes; who listen and lift up; who help us grow comfortable—physically and emotionally—with our changing bodies; who stand beside us through the tough times.

Artist & Scientist
Artist & Scientist

Steve recently marched by my side in our local Women’s March. He identifies as a socially liberal, fiscal conservative, while I am (I took a test) left of the Dalai Lama. He does support a majority of the March’s official platform, but we hold different enough views that when we discuss politics, we often find ourselves baffled and frustrated by the other’s perspective. Still, we listen, and we learn. We don’t expect we’ll come to consensus about every issue, and we don’t make consensus a precondition for civility or respect, and certainly not love. I knew, when we found each other, that what we’d found was rare. After traveling through cancerland together, I understand that truth even more deeply. And after watching the world in the past week, I understand, and value it, more deeply still.

Radiation begins on Monday. Steve still helps me into my coat every day. And until my range of motion improves enough for me to put it on by myself, I know he’ll be there, holding it open and sliding it over my shoulders, ensuring I stay warm and protected through the long winter’s chill.

Past Perfect: The Grammar of Healing

My husband is the math mind in the family; I’m the English nerd. But lately I’ve found myself thinking less about settings and symbolism, and more about symmetry and statistics.

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Mirror, Mirror…

Many years ago, I did an experiment where I held a small mirror up to the center of my face while looking in a second larger mirror, so I could see how I’d appear if my face were perfectly symmetrical. All of us are at least a little asymmetrical, so the trick quickly reveals the differences, large or small, in the two sides of one’s face: the right eye has a little more tilt than the left, maybe, or one cheek is a bit fuller than its counterpart. The altered reflection, for me, almost felt like looking at different person, perhaps a sibling of myself.

notetnc2The process of bilateral breast reconstruction has a tendency to highlight other asymmetries. The first thing my reconstructive surgeon said to me when he looked at my pre-surgery chest was that my left rib cage sat a little more forward, was a tiny bit more prominent, than my right. I’d never noticed this particular (minor) anomaly, but it’s apparently just as common for there to be asymmetry in the rib cage as in the face. The difference in my bone structure became most noticeable immediately after surgery and during my early tissue expander fills; for a while the right expander lagged behind the left, making me look lopsided. I also discovered I have a pocket of fat on my right upper back, unmatched on the left, which appeared only when I didn’t have breasts to pull the skin forward and keep it flattened out.

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Even Olympic athletes’ bodies vary dramatically. (Photo by Schatz and Ornstein)

Studies indicate we equate higher levels of symmetry with perception of beauty, so it’s only too easy to worry over our various anatomical irregularities. But there’s so much about our bodies that’s out of our control: the set of our features; our bone structure; height; the size and shape of breasts, booty, genitals, hands and feet. We can exercise and lift weights to affect our body composition—but the ability to bulk up muscle mass, and the places our fat cells are predisposed to distribute themselves? That’s pre-determined. Significant elements of our health are hardwired too: some suffer multiple allergies from birth, for example, while others are born with immune systems seemingly hewn from impenetrable stone.

Bodies are glitchy and unpredictable in surprising ways, for better and for worse. The fact my body grew a malignant mass is somewhat mysterious: I am, as best we can tell, the first person in my blood family on either side to develop cancer of any kind. My body’s responsiveness to treatment is, to my mind, equally mysterious, and awe-inspiring: I learned this week that only 20 to 30 percent of triple negative breast cancer patients have, as I did, a “complete pathologic response” to chemotherapy. I was thrilled when we got the pathology report stating they’d found no evidence of remaining cancer during surgery, but the news felt weirdly abstracted. Learning the actual statistical probability of achieving that response was sobering. It made me realize just how incredibly fortunate I am. Having a complete response lessens the chance of recurrence dramatically, dropping it from 35+ percent down to 5 percent. As my oncologist said, it’s cancer, so there are no guarantees. But short of never having developed it in the first place, the odds for long-term survival are the best they can be.

davinciI’ve often felt lucky to be in the body I am. Aside from some cranky tonsils, a couple bouts of pneumonia, and one broken bone, I’ve been hale and hearty most of my forty-seven years, and I’ve managed to stay active and maintain a healthy, if not altogether svelte, weight into my middle age without Herculean effort. Excepting the sixth grade, when my legs had a sudden growth spurt separate from the rest of my body that briefly turned me into a sort of hybrid stork-human, my parts are mostly proportional, and my face, while perhaps not symmetrical enough for Hollywood’s standards, is reasonably attractive.

I did nothing (unless you count that bane of puberty, wearing braces) to “earn” any of these features of anatomy. They just are, like my cancer, like my cancer’s responsiveness to treatment. Why did my body grow malignant cells in the first place? I don’t know. Why were those cells especially sensitive to death-by-chemotherapy? I don’t know the answer to that either. I do know I’m extremely lucky and profoundly grateful to be in the relatively small percentage of survivors who have that experience.

survivorship4I’m just vain enough to feel relieved that the obvious asymmetries that appeared in my chest and back are slowly evening out as reconstruction progresses. But I’m far more reassured by a different realization. As I walked into the dining room Tuesday night, preparing to sit down to dinner with my hubby, it suddenly occurred to me: I no longer have cancer. Granted, my treatment isn’t quite done–follow-up radiation is the standard-of-care for triple negative diagnoses, even with a complete response to chemo, and reconstruction will take a while longer. But the chemotherapy worked; the surgery confirmed it. No more need I say, I have cancer.  Now I can say, I had cancer.

My inner English nerd reappeared, rejoicing: the simple past tense has never sounded so beautiful.

Of All The Hair I Lost…

Of all the hair I lost, I missed my pubic hair the most.

I know a lot of people go to great effort and endure significant discomfort to remove the hair in their nethers. I briefly tried shaving once a few years ago, and I didn’t get the appeal. When after chemo my pubic hair shed alongside all the other hairs on my body (exception: seven eyelashes), I’ve never felt more profoundly naked.

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Minimal eyebrows, maximum cheeks
Losing my eyebrows was a close second. When I was first diagnosed, I knew I’d lose my head of hair; I knew, eventually, I’d lose my breasts. No one warned me that, for a while at least, I’d also lose my face.

As a born blonde, my brows have always been light, especially in summer when they’re bleached by sun exposure. I usually fill them in a bit with a light brown pencil, lest it appear I have no brows. For the month or so that I did, in fact, have no eyebrows, I almost couldn’t recognize the pale, perpetually startled face in the mirror (an effect enhanced by my having the cheeks of a puffer-fish, courtesy of steroids). Eyebrows are a key factor in facial recognition, according to a 2003 study conducted by behavioral neuroscientist Javid Sadr: study subjects asked to identify fifty famous faces in digitally altered photos could ID the celebrity only 46 percent of the time when the eyebrows were absent. Small wonder my browless visage looked unfamiliar, even to me.

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The borrowed wig
Losing the hair on my head bothered me least, which is probably why I never opted for a wig. I tried them on twice. The first time, I borrowed a short wig from another survivor so I wouldn’t have to take my new driver’s license photo bald. It was a very nice wig, but the weave was thick, and I’ve never had that much hair in my life. I felt like a fake.

Later, a friend of mine invited me along to visit her hairdresser’s wig shop in Lynchburg while she got a haircut. I found a few wigs there that I felt more comfortable in; they were constructed differently and better mimicked my naturally fine hair. I couldn’t decide if I should be comforted or alarmed that the one we all liked best was an angled bob—especially in gray.

My chemo had already concluded at that point, though, and I was hoping my own hair would soon return. Plus, it was hard to imagine asking my doctor for a prescription for a “cranial prosthesis” with a straight face—the term most insurance companies require for coverage.

Thankfully, my various hairs have begun to grow back, though the universe has had a great sense of humor about the order of things. The first place I detected stubble was on my legs, specifically my calves. Seriously? I thought. The first hair to come back is the hair I deliberately shave off several times a week?

img_0829Hair also began to grow “back” in places I didn’t remember having hair before. Like the front of my neck. Large downy patches on my cheeks. As a fine fuzz began to cover my scalp, tiny hairs also outlined the helix of each ear in a soft halo. I know most humans, women included, have a layer of fine facial hair, but I don’t recall mine previously having been quite so thick.

The verdict is still out on the color of my incoming head hair. My mother thought the initial peach fuzz looked light, “like the white-blond hair you had when you were a little girl,” she said. I wish. Steve thinks it’s brown. I definitely see some lighter highlights, but I’m guessing they’re gray. If I’m lucky, they’ll be that pretty, glinty, silvery gray some folks get. And texture is a real toss-up post-chemo: hair that was once straight often comes in curly; curly hair grows in straight. Since mine is maybe yet a quarter-inch long, the only texture it has at present is soft and fuzzy, like a velour jacket. My head seems to invite a lot of rubbing.

img_0837As my eyebrows have returned, I’ve stopped having to draw them on from memory (tricky to get even, easily smeared). They’re coming in the same light-brown, taupe-ish color they’ve been since college. It’s nice to see a glimpse of the familiar when I glance in the mirror, instead of a surprised alien.

And yes, it’s a relief to be less bare “down there.” I’m told there are wigs, called merkins, available for one’s nethers; movie stars sometimes wear them in nude scenes for a little extra coverage. But though I felt unduly exposed, I can no more fathom going to the trouble of attaching extra hair to my crotch than I can fathom enduring the pain of waxing it bare. Besides, according to an article by Ian Lecklitner on the Dollar Shave Club website (oh, the irony), all of our naturally-occurring human hairs have an evolutionary purpose: eyebrows, in addition to identification, are “ergonomically engineered” to protect the eyes from moisture and debris; pubic hair helps to foil bacteria; head hair serves as insulation. So I’m glad, for the most part, that my follicles are up and at ‘em again.

Though I do wish someone could explain just what evolutionary advantage I’ve gained by having fuzzy ears.

 

As Good As It Gets!

The good news: when I went in for my second “fill” today, I was able to have one of my JP drains removed. Here I am, happily saying goodbye to it:

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The length of tubing stretching from the open end in my left hand to the fingers of my right was what was inside my body–yikes. Makes we wonder where, exactly, it all wound around.

So that’s the good news. But the BEST news is this: my pathology reports from surgery came back, and I am officially cancer-free! They found NO cancer cells in either breast or in lymph nodes. None. Nada. Zilch. Hooray!

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Receiving the report makes for a great start to the new year. This is me enjoying a celebratory Starbucks. Cheers!

I will still undergo radiation treatments, as one final precautionary push-back against the possibility of local recurrence in the skin or area lymph nodes. Radiation will start in another three weeks or so. In the meantime, drain #2 will likely come out within the week (which may, on its own, be enough to warrant a second celebratory latte!).

There are no guarantees; there never are in life. But in this context, on this journey, today’s news is genuinely as good as it gets. I am humbled and deeply grateful.

Please celebrate with me by hugging someone you love, and telling them how much they mean to you. Happy, happy new year, all!


Coming soon: more thoughts on hair, an homage to husbands, and some new ideas for doing good to feel good in 2017. Thanks as always for reading!