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.
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.
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.
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.
No, I don’t receive my radiation treatments standing out under a tree (how much more pleasant a prospect…), or while listening to pop music from 1990.
I do, however, assume this position for treatment each weekday: arms stretched above my head, the left cocked at a lower, tighter angle due to ongoing mobility issues, my head lifted and turned to the right both to watch the breathing monitor that governs my dosages and to expose the lymph node basin just above my clavicle, all the better to zap it.
Standing up in the position, as I am here, I look like I’m vogue-ing, a la Madonna.
Lying on the table beneath the machine, I feel more like I’m a TV crime show victim awaiting a chalk outline.
It can feel a little grim there on the table, centered in the red line cross-hairs of the laser positioning beams, listening to the whines and whirs of my radiation being delivered.
So, all of my doctors know this view: me, holding a journal, my mouth open, asking the latest in a string of just-one-more questions.
They may sometimes wonder if there’s anything in my journal -except- questions. But each of my practitioners, including my radiation oncologist Dr. Buck, has answered each query patiently and thoroughly.
We’ll have one more consultation next week. And I’ll probably have a few last questions. 🙂
Things have been a little crazy lately, between daily radiation, a brief work trip, and a non-blog writing project with a fast-approaching deadline. I am glad to report that, including today, I am down to my last 10 radiation treatments! Inspired by a friend’s comment on Facebook, I thought I’d do something a little different this week, and post a pic each day to mark the countdown. Though I will still have quite a ways to go with reconstruction and full recovery, concluding radiation feels like a significant milestone, as it marks the close of my cancer treatment. After so many months, that feels pretty major.
I’ll soon be back to regular posts (I have a backlog of stories to share, including a more in-depth reflection on radiation, and more books and hats. Always more hats.)
My regular readers (what a gift, to think I have some regular readers!) might have noticed that I have only been posting once a week of late, instead of twice. I seem to be experiencing a bit of writer’s block, not in the sense that I don’t have plenty of material (in Cancerland, there is never a shortage of material), but in the sense that I can’t seem to get myself to sit down and focus long enough to do the work.
I think it’s because I’m angry.
Anger is, of course, one of the five stages of grief (cf: denial, anger, bargaining, depression, acceptance). While I’ve certainly been grieving (my identity as a “healthy, active” person, my breasts, my mobility, my peace of mind), I don’t think I’ve spent seven months stuck in denial. Which makes me think those stages are rather like descriptions of the writing process (cf: planning, drafting, revising, editing, publishing)–neither grief nor writing ever follows a nice, neat linear narrative, even though we talk about both as if they did.
One of my friends recently noted that she liked the anger stage of grief because it was at least galvanizing for her. I feel, at present, more paralyzed. Overwhelmed. I’m angry that all the treatments make me feel worse than the disease ever has. I’m angry that I’m over half a year in, and I still have at least half a year to go. I’m angry that while I’m presumably cured, just in case I’m not really cured (sneaky little bastards, those cancer cells), I have to have 2 x-rays and 6 million photons of radiation shot into my body five days a week for five weeks. I’m angry that not one of seemingly hundreds of studies on creams, lotions, and gels have resulted in any definitive conclusions about what really does and doesn’t protect your skin from radiation, making the risk of long-term damage (for me=potential issues with reconstruction) ultimately an individual genetic crapshoot.
And then I feel guilty.
Because while it sucks to have cancer, I am getting excellent medical care. The chemo worked! I am healing! I can afford to hit my cancer yet one more time with radiation because I have the gifts of time and good insurance–not everyone does. My surgeons, doctors, nurses, and technicians are skilled, smart, supportive. My husband is amazing, and friends and family and even strangers encourage me everyday.
So I get that I’m lucky, and I’m profoundly grateful.
But I’m still angry.
Having been forcefully reminded just how precious and precarious is this life, I’m angry with how badly people treat one another these days. And I don’t just mean in comment threads on social media, though the vitriol online makes me shiver. From our highest government leaders to our neighbors down the street, it seems like we’ve abandoned empathy and simple acts of kindness almost everywhere. One recent example: Roanoke has a number of rather short C-shaped on/off ramps connected to the freeway that runs through town. Yesterday, driving between appointments, I moved over into the left lane at one such ramp to let two cars merge. I needed to gain access back into the right lane almost immediately, as my exit was coming up, so I put on my blinker, thinking the silver VW Bug I’d moved over for would likely return the favor. Instead, the driver accelerated to where he was just close enough that I couldn’t move over safely–and then stayed there, keeping pace, even after I tried accelerating myself to pull ahead of him. I had to brake and go around him from behind at the last second, or miss my exit. He smiled smugly as he passed me on the right.
Did the young man have something against middle-aged women? My plaid fuchsia hat? My “animal friendly” license plate? Was he just pissed because my blue Cube is way cuter than his Bug? Seriously: why the deliberate act of meanness?
It’s possible (though I think unlikely) he was simply oblivious, but even so: in this age of near-permament distraction, if we start using distractedness as a justifiable excuse for unkindness, we’re in deep, deep trouble.
Blowing my horn and flipping him off (oh, yes, she did) didn’t make me feel much better. There’s something else that I think will. But I need your help.
Now, I don’t know about you, but lately I’ve seen so many negative news reports alone that if I were to try to counter them five to one, I’d never be able to keep up. But how about two to one?
This is my Do Good to Feel Good challenge to you: counter negatives you experience (or create) with double the positives. Embrace the 2:1 Kindness Ratio.
If someone is a jerk to you in traffic, do two good deeds toward other drivers to offset it.
If someone insults you, pay two compliments or offer kind words to two people, as a kindness-counter-gesture.
If you read and share articles about scary and frustrating things happening in our government and world via social media (and I think we must, to stay aware and informed, even, or especially, when truths are hard; we must also vet all sources, and resist fake news!), then also make an effort to read and share a few stories of good news, too. (If nothing else, there’s always cute cat photos.)
Of course, the best way to curtail unkindness is to make sure you yourself aren’t initiating it. So be civil. Period. Pay attention to those around you, and practice choosing empathy first. Would the young man in the Bug have been nicer if he’d known I was heading to radiation treatment for cancer? I don’t know–but none of us should need a reason to be nice. Your mama, like mine, no doubt taught you that things like rudeness, name-calling, and stereotyping are ugly, and she was right. So stop it. And if you goof up, pick your two positive actions and make them happen.
Perhaps anger really does galvanize one to action. But anger is exhausting. So let’s all try to dig ourselves out of this karmic hole we’re in. Two to one in favor of kindness: is that a bargain, or what?
On 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.”
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.
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.