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.
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.
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.
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.
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.
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.
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.
I hosted a tenth-year anniversary gathering for alumni tutors of the writing center I direct. I had a lovely visit with my parents that included planting herbs and taking a road-trip to the American Museum of the House Cat (quite possibly every cat lady’s dream…). I dropped off my leftover chemo-side-effects drugs at a safe-drug-disposal event—most cathartic! And I attended my 25th college reunion at Agnes Scott surrounded by smart, accomplished, inspiring women, an event especially meaningful because of all the moments in the last year I wasn’t sure I’d be able to be there.
Visiting the folks
I made a decision in April to embrace celebration as much as possible; my still-limited energy went to people and travel (and cat museums). That left little for writing. The danger (if one might call it that) of concluding my story on the blog with that triumphant dance down the hallway is that it suggests my journey through cancerland is complete. If I’m honest, my writing hiatus reveals my own deep-seated desire for that to be true.
But it’s not.
Being declared cancer-free is cause for celebration; being done with treatment is, well, tremendous. One small hiccup: being done with treatment is only the first piece of the process. Thus, with the celebration comes the struggle.
I’ve come to think it’s like hiking a mountain. Diagnosis and treatment, including chemotherapy, surgery, radiation—that’s the climb. The climb is hard, arduous, laborious. Many would say it’s the toughest part of the hike. There’s not much of an appreciable view along the trail; you keep your head down and push forward to the top. The summit, if you’re lucky, will be the ultimate reward: a cancer-free body, a beautiful view of a healthy, promising future.
It’s lovely, beyond lovely. But you’re still at the top of the mountain. And you can’t stay forever at the top of the mountain. You still have to make the climb back down.
Maybe only those with knees over forty can really relate, but trust me when I tell you: climbing down can be harder than climbing up. It puts pressure on different parts of your body. It requires adjustment to your sense of balance. In terms of perception, descending a steep slope is often scarier than ascending; fear of falling is heightened. And while, when you’re going up, your goal is clearly defined—you want to reach that summit—when heading down, the end-point is a bit more amorphous. You want to get off the mountain, eventually. You want to be done hiking and take a load off and relax. But when is the hike over? When you get to the trail-head? When you’re back at your campsite, or cabin, or house? After a warm shower and a thorough tick-check? And then there’s the fact that after making that climb and seeing that view, nothing will ever feel or look quite the same again.
Since completing radiation I have experienced ongoing pain and mobility issues related to something called “cording” in my left chest and arm (reaching, carrying, just getting dressed are problematic), along with the accompanying possibility/threat of lymphedema. I’ve had anxiety about recurrence and occasional flashbacks to particularly traumatic moments, events my doctors have likened to PTSD. “Chemo-brain” frequently robs me of words mid-sentence, and I often feel like I’m living in someone else’s body. I used to run 5Ks, lift weights, hike, bike, and paddle for fun; now it’s a challenge to walk 2 to 3 miles a few days a week and complete my physical therapy exercises daily.
I don’t share these facts for sympathy. I just want to paint a realistic picture of what recovery—even in the best-case-prognosis-scenario—looks like. Since treatment ended in early March, I’ve had 17 PT appointments, 5 therapeutic massages, 2 counseling appointments, 2 support group/Komen education meetings, 3 appointments with cancer-related specialists, and 3 additional doctor appointments, 2 of those to treat conditions likely brought on by my weakened immune system. That’s 33 recovery-related appointments in 72 days. I have 7 more appointments pending between now and the end of May.
My survivorship experience is not unusual. My physical therapist has repeatedly told me that it typically takes 18 to 24 months after the last major surgery to get back to something that feels like normal, and I won’t even hit that surgery milestone until mid-June.
It’s gonna be a long haul down a big mountain.
Various (well-meaning) folk have described that mountain as “the new normal.” And while I know it’s a big hike, and that my mind and body are in some ways permanently altered, I feel the need to warn everyone I’m likely to punch the next person who suggests that this trail will never turn a corner. It may be the “now normal,” but long-term? In order to heal, I need to believe there will come a time when my social and creative obligations will outweigh the medical appointments on my calendar, when the daily discomfort will lessen enough that it’s not a constant reminder of the hell of so much of this past year.
I can’t predict the future, of course, and I’m working on accepting there’s more bushwhacking ahead than I’d like. But my hope, eventually, is to get back out there and climb a different mountain, a real one, with a name like Sharp Top or Buffalo or Bald Knob. I want to lift my face to the sun and drink in one of those views, feel gratitude in my heart and strength in my body. And know that my knees, however creaky, can handle the steep climb down.
Stay tuned for a chance to vote on a name change for the blog (don’t worry, this URL will still work, too!), more bionic boob stories, new books and resources, and—of course—more hats!
First, of course, was the conclusion of treatment: with my last dose of radiation on March 6th, the treatment portion of this long road is complete. I am cancer-free, and the plan is to stay that way.
Since then, one event after another made it abundantly clear how completely cancer claimed this past year of my life. It began with what I’m calling “the list of the missed.” First, we discovered I’d forgotten to get my car inspected in 2016. I drove minimally after chemo began in July and only began driving regularly again to radiation appointments. I didn’t register the expired sticker until Steve (poor Steve) needed to use my car one day and got pulled over. Shortly thereafter, my gynecologist’s office notified me I’d missed scheduling my annual exam. Then, while traveling in Portland, I asked my niece how long she’d been a blonde. Though she lives far away, I keep up with her via Facebook. Or so I thought. She’d been blonde since last summer, she said.
In quick succession followed the Spring Equinox and the Science Museum of Western Virginia’s annual Butterfly Ball, each an even more profound reminder of how quickly things can change, how consuming treatment was, and how grateful I am to be on the other side.
After my initial diagnosis in early June, I was scheduled for an MRI, after which I was to meet with my oncologic surgeon to find out specifically what kind and stage of breast cancer I had. My appointment with her fell on June 21st, the day after the Summer Solstice.
On the Solstice, ten days after my diagnosis, I prepared and carried out a Solstice ritual. I find value in rituals, especially in times of transition. Based in large part on an article by Monica Carless in Elephant Journal, my ritual was in essence my plea to the universe that the news at the next day’s appointment be good: that the tumor be small, the cancer caught early, the stage 1 or 2. I dressed in white, and we lit a fire in the firepit in the backyard. I lit three candles, one each to represent the past, present, and future. I spoke some text, mostly borrowed from Carless, a portion of which went like this:
“Surrendering under a Full Moon becomes a ritual of letting go and breathing in the fine essence of being taken to unknown place. Although our fear may steer us away from valuable lessons, surrender takes us by the hand and guides us to new strengths…. During this Full Moon we are handed a great opportunity to find balance and open-heartedness, forgiveness and hope. Shall we take it, hands held, eyes to a peaceful future? While we could easily to slip into worry and fear, it’s better to surrender to hope—it is a deliberate choice.
During Summer Solstice we are bathed in light from the sun and the moon. At a time when darkness threatens to overwhelm our hearts, we are gifted with more light than we have experienced in months. Is this a signal to trigger our hope? I welcome this Full Moon and Summer Solstice as a herald of good things to come.”
Steve and I then wrote down fears or thoughts we wanted to release, tossed our papers into the fire, and spoke aloud any wishes we wanted to share. I threw sage in the fire for purifying, and lavender for healing and safe passage. I blew out the candles representing the past and present, leaving the future candle to burn into the night.
Future burns bright
Full Moon on Solstice
The next day the news—while far from the worst it could have been—was much worse than we had hoped. Triple negative cancer. A six centimeter mass, lymph nodes involved, Stage 3. More tests needed to be sure it was not Stage 4. Chemotherapy, bilateral mastectomy and radiation all likely. That appointment and the six days that followed still remain one of most traumatic weeks I’ve ever endured.
The Spring Equinox, March 20th, marked nine months since that summer ceremony of hope, the last evening we were free to imagine a different reality than the one we were presented with the next day. Nine months—a gestation period. It seemed important to mark the Equinox, sometimes called the “day of equilibrium,” with a ceremony as well, as a way of bringing things full circle and signaling my moving forward.
The Spring Equinox celebrates re-birth and renewal. This time I borrowed ritual language from articles on foreverconscious.com, refinery29.com, and whitegoddess.com (sources in links) to create a pastiche script of personal significance that read in part:
I burned the “Bye-Bye Cancer” signs from my last radiation treatment in a brass pot. Then we smudged the house with a sage smudging stick to cleanse it, and lit a new candle from the flame. We wrote healing intentions, which I placed in a cloth bag with rose petals, flowers being symbols of spring and rebirth, and touched a growing green plant. There were a few tears.
It felt good to mark the Equinox with another ritual, this one focused on cleansing, healing, rebirth, and balance—moving forward along the path I’m actually traveling, rather than wishing for a different journey.
Regaining my footing
A few days after the Solstice, I saw an advertisement for the Science Museum’s annual Butterfly Ball. Steve and I have attended every year since it debuted four years ago, including the May 2016 event, which took place almost a month to the day before my diagnosis.
I didn’t know then it would be the last ball I would dance at for nine months.
We attended several dances during treatment, the first a Halloween ball just after chemo finished in October. I got out on the floor for the Cha-Cha Slide and realized I didn’t have enough strength, or balance, to actually hop when I was supposed to. I had to fake-hop, and after one more line dance, I was done for the evening. We went to the President’s Ball on campus in November; another annual event for us, attending felt like a declaration of normalcy.
2016 Butterfly Ball
President’s Ball 2016
Consider: I have danced in the aisles of the Dollar Store, in the parking lot of a beach restaurant, on a deck in the middle of the woods to an iPod. I am always one of the first people on the dance floor, one of the last to leave. This year we spent the President’s Ball sitting down, listening to dueling pianos, watching others take a twirl.
The Butterfly Ball fell early this year, but we got tickets just in time. When we arrived at the Science Museum, a DJ was playing, but by the time we ate, walked through the Butterfly Garden, and visited the on-site science experiments, he’d moved on to karaoke.
We stood with the crowd and listened to the first performer or two. Then someone chose a love song to sing, and I took Steve’s hand. He looked at me skeptically but followed my lead. Who says you can’t dance to karaoke?
Cheek to cheek
Immersed in the music, wrapped in my husband’s arms: it did indeed feel like a rebirth, a new beginning. I can’t yet dance with abandon as I used to; Steve tried to spin me once, and my less-than-flexible upper body reminded me I have more healing to do.
Still, the forgetting, even for a moment, felt good. Almost as good as my feet stepping back out on the floor.
I took a short hiatus to process the conclusion of treatment, but I’ll soon be returning to a regular posting schedule. Thanks, as always, to my readers for their support!
Go on now, go. Walk out the door. Just turn around now, ’cause you’re not welcome anymore! Weren’t you the one who tried to break me– WELL, GOOD-BYE! Did you think I’d crumble? Did you think I’d lay down and die? Oh no, not I! I will survive! Oh, as long as I know how to love I know I’ll stay alive. I’ve got all my life to live. I’ve got all my love to give. And I’ll survive, I will survive!
I couldn’t help adopting Gloria Gaynor’s anthem (lyrics above, with one important edit, in red!) to accompany my exit from my LAST radiation treatment.
After I danced down the hall, I cried, tears of relief and joy.
It’s been almost nine full months since I was diagnosed with breast cancer on June 10th. (Interesting side note—that’s about how long Steve and I had been married prior to my diagnosis, as well, nine months). After 16 weeks of neo-adjuvant chemotherapy, a double mastectomy, and 5 weeks of radiation, I’m now done with treatment for cancer. Though I was officially declared cancer-free post-surgery, I finally feel I can say “Bye-bye cancer!” with feeling.
And it feels gooooood.
My skin (ouch) still has to recover from radiation, and then there will be a couple of follow-up reconstructive surgeries. But as I noted when I started this countdown, today feels like a significant milestone. Back when I was first told I would need chemo, surgery, and radiation, the prospect of all of it seemed so overwhelming. It was hard to imagine this day. Now it’s done, and I can move forward and focus fully on healing.
Feeling good and healing better. And to top it off, my celebratory iced latte, fortuitously, matched the card Steve gave me–and both are the color of shamrocks and four-leafed clovers.
Every day that I receive treatment, two kind radiation therapists help settle me onto the table comfortably. A third supervises and collaborates with them to make sure I’m lined up just right. Often one of them is a student of the medical school. Then they all leave the room to watch the computer monitors, administer my doses, and come back in and help me sit up (not an easy task, balanced on a surface not much more than 12 inches wide and several feet off the ground). Together we reassemble my cape, and they help me get my feet back on the floor.
No matter who is on duty on a given day—Bridgit, Raye Lee, Lynn, Amber, Aaron, Lauren, or one of several others—they’ve been unfailingly kind, professional, and upbeat. And they have been very tolerant of my requests to take photos. 🙂 I owe them a great thanks.
Knowing the penultimate treatment is in the books (and in my body) gives me peace. Thumbs up to two days off, and just one more turn under the rays!