Climb Every Mountain

April was a month of celebration and struggle.

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.

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.

IMG_7739
Sharp Top Mountain, June 2016

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.

IMG_4444
Buffalo Mountain, May 2015 — with eyes toward a return engagement!

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!

March, Forward

March was a month filled with markers.

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.

Blonde since when…?

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.

Losing balance

 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.

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.

Seeking equilibrium

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:

Equinox is the perfect time to honor the growth and the pain, the light and the darkness and all the experiences that have made you who you are today. It is the perfect time to love yourself and learn to find gratitude and peace with the journey you are on,” a time to “manifest, release and create.” Furthermore, “It is a time to meditate on the way change brings balance” a time to cultivate patience and enjoy the process of growth. “Plants don’t burst into bloom the minute their seeds are laid and birds don’t emerge from their eggs fully grown.” It is a “time to free yourself from things which hinder progress” and “to perform “banishings and also perform workings to gain things we have lost, or to gain qualities we wish to have.

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.

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?

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!

Treatment Countdown 10, 9, 8, 7, 6, 5, 4, 3, 2, 1!

ONE and DONE!

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.

Yay! I couldn’t have said it better myself.

 

Treatment Countdown 10, 9, 8, 7, 6, 5, 4, 3, 2…

2 kind technicians…

Technicians

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!

img_1717

Treatment Countdown: 10, 9, 8, 7, 6, 5, 4, 3…

3 fields of radiation…

So, I thought it would be fun to visit three sunny fields and snap a photo in each for this post. But frankly I’m too tired, so I’m just going to take a nap right here and let you imagine two other fields of your choice. 🙂

“She’s got three fields,” the lead technician says to the others each day as they are positioning me on the table. “Three fields” refers to the fact that I receive three different doses, 1.8 Gray each, at every treatment. Each is directed at a specific part of my anatomy and comes from a different angle as the arms of the machine rotate around my body, and they are delivered sequentially. The first dose comes in from above and to the right, the second from below and on the left, and the last from directly above, targeting a lymph node basin in the super-clavicle area.

ExitDose

You can see how precise the boundaries of each field are by looking at how clearly defined my “exit dose” is, above, a result of the super-clavicle radiation passing through and out my back.

Three fields, but only two more treatments. Hooray!

And now I am really am gonna go take that nap…

img_1676

Treatment Countdown: 10, 9, 8, 7, 6, 5, 4…

4 oils and lotions…

img_1652

One of the biggest issues with receiving radiation treatments, especially on sensitive areas like the chest and neck, is radiation dermatitis. To that end, it’s really important to take care of your skin as best you can through the process, and apply oils, creams, or lotions that soothe the skin and ease the burn.

I have what is perhaps a complicated routine. Based in large part on advice offered on MarnieClark.com, as well as some additional research I conducted, I start with a layer of calendula oil (from the marigold plant), followed by aloe vera, then apply organic hemp oil with a few drops of lavender essentail oil mixed in, and end with cortisone cream. I also have some lotion called Radiaguard, made especially for radiation patients, that contains lidocaine for when I get really uncomfortable.

img_1668

I’ve been lucky not to need too much lidocaine, but just yesterday I hit a point where the red areas on my skin had become so defined that you can tell exactly where the radiation is being administered. Since I’m getting one dose in the super-clavicle area, I also have an “exit dose” going out my back, so there’s a well-defined red square there I have to treat, too.

Four oils and lotions, sometimes five, every day, three times a day. I could have used something like Aquaphor, but even my non-radiated skin doesn’t respond well to petroleum-based products. At my appointment last week my doc said my skin looked better than a lot of women’s did at that point, so I think natural oils and cortisone were a good choice for me.

I did have to buy a couple cheap underlayers to absorb excess oil and keep it off my clothes, but if I can avoid any serious blistering and keep my skin in shape for the next steps of reconstructive surgery, those couple of throw-away t-shirts will be worth it.

Down to three, and counting…!

Treatment Countdown 10, 9, 8, 7, 6, 5…

5 Computer Screens…img_1620

Okay, so I look a little tipsy and my tag is sticking up (I told you they made us wear the capes backwards). Maybe I’m just drunk with happiness to be drawing ever closer to the end of this process.

That’s my spine on the screen there. In addition to my radiation treatments, I also have what’s called “on board imaging” each day, The technicians take two x-rays to be sure my body is precisely positioned to receive those 6 million photons in exactly the right place. Once a week they take an additional set of x-rays as another check. I wasn’t kidding either when I said I feel like I ought to be glowing by now.

The whole process is incredibly high-tech. There are physicists on staff who use preliminary CAT scans to “map” each patient’s dose at the beginning. The delivery is controlled in part by my breathing—I have to watch a screen inside the treatment room and breathe in until I hit a defined target area; only then is the radiation is delivered.

fivescreens

The five screens above are located outside the actual treatment room, and they are used by the technicians to administer my treatments remotely and monitor the machine and me during the process. The first time I saw the bank of them I was reminded of the control room of a spaceship in a sci-fi flick—until I noticed my name at the top of every monitor. It’s not how I would have preferred to make my screen debut.

Done with #5, and only four left to go!