New Treatment on the Horizon

Steve and I are wrapping up our time on Ocracoke Island. It’s been a good visit, a nice change of pace and place. Sun, sand, sea, and shells are always healing. It’s been a challenging visit in some ways, too, but that’s another post for another day. Today, some other news is foremost on my mind.

We’ve known for several weeks now, based on changes happening in my body, that Sasquatch is no longer working as well as it needs to. They call it “breaking through” when the cancer stops responding to a drug, and unfortunately, the rogue cells have broken through. That’s the bad news.

The good news is that we got the results back from a test to explore the likely effectiveness of an immunotherapy drug, and it looks really promising. A score of 10 or higher is considered good, and I scored over 50. So I’ll be starting a new treatment protocol with a combination of immunotherapy and chemotherapy next week. The original plan was to begin Monday at 8 am, but we’re still waiting on insurance authorization. Don’t ask me how I feel about insurance companies’ ability to interfere with treatment plans right now. The plan is to start as soon as we possibly can.

It’s a bit disconcerting to have Trodelvy stop working. But I keep thinking about, of all things, a caving trip I went on with my church youth group in the eighth grade. I was a little anxious that I’d experience claustrophobia, as I wasn’t fond of small spaces. But what I found was this: I was completely fine crawling, wriggling, and squeezing through the narrowest of passages, as long as I could see a way forward. The only time I panicked was when I came around a corner and the passageway appeared to dead-end in front of me. It was an optical illusion–the passage simply made a hard left, which I realized when I heard voices ahead and saw a brief flash of light from a headlamp. I made the turn, and I was back on track.

I realize there may come a time when we will have exhausted the alternatives, and I dread that possibility. But for now there is a way forward, so I’ll keep on pushing through the tight places. In the meantime, Steve and I are going to watch another sunset over the sound and look forward to cuddling our kitties again tomorrow evening. Onward!

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.

 

 

They’re Not “Just Boobs” to Me

“They’re just boobs.”

More than one well-meaning friend or acquaintance has uttered that or a similar statement in an attempt to comfort me, minimize the anxiety I feel as I face a bilateral mastectomy. I will willingly say good-bye to my natural breasts in the interest of prolonging my life; it’s the wise choice. But there’s no “just” about it.

They aren’t “just” boobs. They’re my boobs. My breasts are part of me. I have not, and will not, “use” them, it is true, for their evolutionary purpose, to feed a child or children. As such, some might say they are extraneous.

But they’re mine. And I like them.

And I grieve their loss.

~~~

I didn’t always like my breasts. They debuted, when I was a young teen, as small knots on my chest, literally: hard bumps arose underneath each of my nipples. I was embarrassed to ask my pediatrician to examine these buds, but he reassured me (and my mother) everything was fine. For years I worried I was “too small,” even after I turned seventeen and suddenly gained a cup size, perhaps a result of the hearty German fare I ate while an exchange student that year. I still felt my minimal cleavage didn’t quite balance out my womanly hips, that my nipples were too prominent.

And they were troublemakers, these breasts of mine. When I was in my late twenties, I found a lump. It turned out to be nothing but a benign, fluid-filled cyst, and some doctors in the medical center at Ohio State, where I was in grad school, drained it. That was the first of many more benign cysts, too many to count.

makeup2It was also the start of many years of creative commentary by various medical professionals. I’m a “cyst-maker”; I have “busy breasts.” Enough nurses and doctors expressed surprise at the number and volume of my cysts that I felt like a curiosity. One surgeon in Georgia, who I’d been referred to for draining yet another set of what one nurse called my “natural implants,” greeted me by exclaiming, “Why, you’re just a little bitty thing!” He waved a copy of my scans through the air. ”After seeing the size of your cysts, I thought you’d have great big ba-zooms!”

I didn’t, though I was slowly learning to appreciate them just as they were. Practically speaking, smaller breasts offered maximum wardrobe flexibility: I could wear low-cut or clingy tops without attracting unwanted attention, and button-downs never gaped. But I also finally realized they were, actually, pretty nice breasts. Kind of perky, actually. By the time I reached my early thirties, I’d have said they were my favorite part of my body.

Like many women, I’ve often struggled with body image and self-doubt. It took me more than half my life to love my breasts. Now I must let them go, and re-learn to embrace my body, post-surgery, all over again.

~~~

I know I am no more or less a woman with or without my breasts. My identity as a woman, my worth as a human, is not defined by the shape or size of my chest. Nor do I assume that breasts are universal signifiers for femininity, womanhood, or desirability. In fact, the way breasts are weirdly glorified and overly sexualized, especially in American culture, has often puzzled and annoyed me. I once argued with a man who insisted that breasts were always sexual. No, I replied. If I choose to walk out my front door with my breasts exposed, or with no clothes on at all, that does not necessarily constitute a sexual act; minus a display of express and clear intent, it’s definitely not a sexual invitation. I’m just naked, and we’re all, as the saying goes, naked under our clothes.

portrait-poseSomething else I know: attachment is the root of all suffering. Yet I find it difficult not to be attached to something that is, well, attached to me. Front and center.

My breasts have been my conscious companions at the beach, suited up and sun-screened in a cleavage-baring bikini; on the figure-modeling dais, revealed in the service of a painter’s line, curve, and shadow; on the running trail, compressed and protected in a jazzy neon sports bra.

My breasts have brought me pleasure in private moments, sensual pleasure wrapped up in sensitive nerve endings and a lover’s tender touch, his open admiration. My breasts have brought me aesthetic pleasure, when I slip into a pretty dress that fits just so, hugs the curves of my hips and breasts in a way that makes me feel sexy and beautiful.

My breasts are not some idle, remote organ like an appendix, whose absence I’d scarcely notice. They are a daily presence and a source of pleasure, and I will miss them.

~~~

I will have reconstruction, and I’m grateful for that. I’ve talked to enough survivors, however, to understand the process is no picnic. And my bionic boobs, as I’ve come to call them, will look and feel quite different from my natural breasts.

I’ve been trying to find ways to reconcile myself to the coming changes. I’ve begun to try to re-frame the mastectomy in my mind: instead of thinking about losing my breasts, I focus on regaining my health. I’m saying goodbye to a cherished part of my body, but I am also saying goodbye to the cancer.

I’ve tried to imagine my breasts as being like an old friend, one whose friendship has become toxic. She was a perfect match in my younger years: we liked the same music, went to the same parties, celebrated good days and commiserated over bad ones. Then, she began to lash out, to drink too much; when I was around her, so did I. We had a great run, my old friend and I, but now—well, she’s not healthy for me anymore. I appreciate the good times we shared; I’m grateful and glad for her having been in my life. Even though it hurts, I know I have to say goodbye.

Still, my body isn’t a metaphor. Metaphors don’t go numb or swell with lymphedema. They don’t scar or press your chest with pain. They don’t change what you wake up to every morning, what you see in the mirror, for the remainder of your days.

I’m working on cultivating greater self-compassion and acceptance. I recently hired a photographer to document and celebrate my pre-surgery body, highlighting my bald head with a beautiful custom headpiece. And this time, after surgery, I don’t want to wait thirty years to decide to like my body, my (new) breasts. It won’t always be easy, but loving myself as I am is a choice I will endeavor to make every day.

headpiece


The photos included here are a preview selection from the shoot described in the post: photos by Michael Wilson, Bohemian Robot Photography; make-up by Jolina Goad, Jolina does Make-up; bespoke headpiece by Sandra Eileen, Every Girl a Goddess Couture Headpieces.