The Impossible Pleasure of Scrubbing a Tub

According to The Facebook, four of my friends have recently toured Italy, another France, still another Ireland, and one is currently posting from the Scottish Isles. At least three more just returned from or remain at the beach, and others have sojourned recently to Chicago, New Orleans, and New York. I’m loving the opportunity to travel vicariously to such beautiful and varied places, and I’m thrilled for the joy evident in their journeys.

I am equally thrilled to be cleaning out my closet.

I’m not being sarcastic. Okay, maybe just the tiniest, tiniest bit sarcastic.

But not very.

Back in 2015, hubby Steve and I moved into a new house, combined our two households into one, got married, and started a new school year—all within two months. I was one week into the 2016 summer break, Steve one week into a new job, when I was diagnosed with cancer. The Summer of Settling In we’d planned was replaced by two Summers of Treatment and Recovery. We still have unpacked cardboard boxes in more rooms of our house than not.

Having the energy to get back to tackling those boxes and cleaning the house is a profound comfort and surprising thrill. Before this past year, I’d never thought it would feel like such a massive accomplishment to be able to scrub my bathtub. Before this past year, I’d never thought about how much physical effort actually goes into scrubbing a bathtub: getting down to and up from the floor, kneeling for an extended period, bending and reaching and applying pressure. You don’t realize how many ways you use your pec muscles in everyday living until they’ve been scraped and radiated and permanently stretched over silicone implants. While I would much rather breathe in the aromas of fresh French pastries or a salty sea-breeze than Mrs. Meyer’s Lavender Counter Spray, I now understand just what a gift it is to have sufficient strength and mobility to wield a scrub-brush and push a mop.

And home projects—actual projects! the same ones I’ve been staring at for months, the ones I occasionally managed to purchase supplies for before my energy petered out somewhere in the aisles of Lowe’s—they are a source of deep satisfaction. Months ago I picked up a few cans of spray paint to refresh a couple of plant stands and a rocking chair. It felt great to finally haul (with Steve’s help) the items out into the yard a week or so ago and give them a few coats.

While I worked on the porch furniture, Steve took the design for some shelf bases he’d drawn back in the spring and put his carpentry skills to work. We still have to get at some more of those unpacked boxes to fill the shelves, but just having them in position on their handsome living room bases is a beautiful thing.

We lived in survival mode for so long, the patient and the caregiver, it’s exhilarating to return to being partners in the care and crafting of our abode. Someday in the not too distant future, I hope, we’ll travel abroad and taste fresh pasta in Italy, or sip a glass of single malt after a trek across the Scottish moors. For now, it feels pretty darn good to chop tomatoes together for a pot of chili in our kitchen, bumping elbows as we rinse the dishes, smiling at these, the simple joys of health and home.


This is the first of a series of short posts I’m calling “Survivor Snapshots.” Since going back to work, it’s been tough to find the energy to write on a regular basis, though there is much to write about. I hope to share a few more snapshots soon. Thank you, as always, for reading!

Hair’s an Update

Hello, friends. It’s been a while. 🙂

I’m glad to say my hiatus is mostly a result of lots of good things going on, combined with an awareness that I still need to apportion my energy. My June reconstructive surgery went well; I’m overjoyed to have soft-ish implants in place of those bricks they call tissue expanders. My hubby Steve and I had a nice beach week at Emerald Isle, and I returned to work at the beginning of August, where my colleagues have been welcoming and supportive. There’ve been some hard things, too. We lost our sweet dog Imoh suddenly and unexpectedly to kidney failure in July. I have one more minor surgery to go yet, chemo brain is real, and I still have to do some combination of physical therapy, yoga, and/or self-massage daily to address range-of-motion limitations and prevent lymphedema.

That last is the other reason I’ve been writing less: now that I’m back at the office, spending a lot of work hours at the computer, my neck and shoulder lock up within a few hours. I have to ration my desk time, a frustrating scenario for a writer. I like to think my tales here do some good, that they offer a kind of window into a world that too many of us have (or will have) a need to understand. And I fear that because I stopped posting, I may have reinforced the idea that the cancer story ends when treatment is done and the rogue cells are vanquished. I (along with every other survivor) probably wish more fervently than anyone that that were true. I would love to “get back to normal.” But I’m still trying to figure out what “normal” looks like.

Consider: at the last check-up with my medical oncologist, I teared up talking about some trifling symptom—a headache, a knee that kept popping—that had worried me briefly. He nodded, and said “After what you’ve been through, for a while, everything that happens to and with your body, you’ll think— ‘It’s cancer.’ That’s normal.”

Process that for a minute. That’s normal.

It’s hard, then, to know what to say when you get an email that includes a genuine, well-intentioned “hope you’re feeling 100%.” It feels cranky and self-pitying to reply, “Well, actually, my doctors keep reminding me that it takes 18 to 24 months after the last major treatment or surgery to get back to baseline.” Or what to think when a colleague asks “How are you? Really, how are you?” and when you begin to answer honestly—you’re good, but still have another surgery ahead and some big decisions to make—she interrupts and says, “But you’re here, you’re good, you look great, you’re healthy.” More than once I’ve felt chastised, like I’m supposed to be so grateful to be alive and cancer-free, I’m not allowed to have any other feelings about the losses I’ve endured. Or if I do, I’m not supposed to talk about them.

The messy truth is that oftentimes people don’t really want to know the messy truth.

I think these kinds of responses are motivated by the same basic impulse: people want a happily ever after story. They want it for the person who’s been ill, because they sincerely care about that person and wish them health and happiness. But they also want it for themselves, because it’s reassuring. If my mortality no longer seems to be under immediate threat, they aren’t reminded of their own when they see me. None of us has to think about just how close we stand, every day, to the brink.

Maybe that’s why my still-short hair confuses and unsettles people. After chemo finished last October, my hair began to grow back by late December, but remained somewhere just shy of peach fuzz until February. As it filled in, people commented, “Your hair’s really coming back!” My returning hair was seen as a proxy for restored health. When I finally had enough for a haircut, I opted to keep it pixie short. With my range of motion issues, and more surgery on the horizon, spending half an hour with my arms lifted above my head every day to style it would be painful if not impossible. It was much easier to manage it short. Besides, I thought it looked kinda cute.

But friends and colleagues, especially those I haven’t seen in a while, continue to comment on my hair growth, often with puzzlement or concern. Most know that treatment ended some months ago. There’s an unspoken question under their words: if everything’s okay, shouldn’t I have more hair by now?

I’ve come to wonder if there’s yet another reason I’ve kept my pixie. Since I don’t, nor do I want to, go around flashing my scars, it’s the primary way I have to telegraph to people that things have changed for me, permanently. That I am still processing through this experience physically, mentally, and emotionally, and I will be for a while. That there really isn’t any “getting back” to normal; “normal” is different than before, something I’m still negotiating, still learning to navigate.

I didn’t plan it that way, but I recognize now that my pixie cut is a kind of signifier. Maybe for myself, as much as anyone. It’s a reminder to be kind and gentle, with myself, and others. It’s a cue to take care of myself, to be patient with this long and often circuitous healing process.

Last year around this time, Steve, my father and I visited the first annual Sunflower Festival at Beaver Dam Farm in nearby Fincastle. It was a chemo weekend, but usually after a Friday infusion I’d have a reasonably good Saturday afternoon before the side-effects would hit hard. Sunflowers make me happy, and we had a good, but short, visit. This year Steve and I returned, and though the flowers themselves were a bit droopy due to lack of rain, it was sheer joy to stroll leisurely through the fields of their sunny faces, goofing around, sharing ice cream. Steve and I will celebrate our second wedding anniversary in a few days. For our first anniversary, we squeezed a trip back to the site of our honeymoon in between chemo treatments. I’ll happily supplant a fancier celebration with this year’s simple dinner at a local restaurant, accompanied by cancer-free body and the relative sense of peace in my heart.

I suspect that, eventually, I’ll grow my hair out, and take its color back again to the blond of my youth. But for now, if my pixie prompts me to spend less time in front of a mirror, and more time drinking in the wonders of this too-fragile world, it’s more than enough hair for me.

Photos taken at the second annual Sunflower Festival at Beaver Dam Farm, Fincastle, Virginia.

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.

 

 

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!

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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…

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

4 oils and lotions…

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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.

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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…!