I’m a few days behind my normal posting schedule this week. I got the second dose of my new treatment regimen on Wednesday, and while the side effects are milder than the previous infusion, I still spent a couple of days feeling less than awesome. But things keep rolling along, as they do. A few updates:
It’s been about six weeks since I got the injection of Restylane in my left vocal cord. It definitely strengthened my voice, which is nice. It also seems to have triggered a tickle that sometimes makes it hard to talk without coughing. That irritation comes and goes, but it is nice not to feel like I sound like a Muppet all the time.
I’m still undergoing swallowing therapy, and I had another endoscopy and dilation. The consensus is that lymphatic fluid build-up and fibrotic tissue in my chest and neck are contributing to both issues. My doctors are concerned that I’m not managing to squeeze enough nutrition through my restricted esophagus, and the gastroenterologist doesn’t want to keep dilating me only to have external pressure narrow things again. So on Tuesday they’re going to place an esophageal stent, to remain for four to six weeks. I’m a bit anxious about it, but I do need to eat more, so I hope it will help and not be too uncomfortable.
Meanwhile, my left arm is currently mummified, wrapped in a multi-layer compression wrap my lymphedema therapist recommended and showed me how to do. I’ll continue that for about two weeks. It seems to be helping, softening the fibrosis in my arm and moving some of the fluid. Hooray! Sadly, now I’ve got some additional fluid backup in my neck, so I’m trying to stay on top of that with manual lymphatic drainage massage. Some days it feels like I’m playing Whac-a-mole.
I seem to be growing some hair back! My oncologist thinks I may lose it again, but we’ll see; it didn’t fall out the first time I received the two chemo drugs I’m on now. I have a fuzzy old man’s head at present.
My new regimen consists of two chemo agents, carboplatin and gemcitabine, and an immunotherapy drug, pembrolizumab. I’ll receive four rounds total of that cocktail, each three weeks apart, and then undergo a scan, with hopes that we can then move to an immunotherapy-only infusion. Despite the side effects, my body does feel like it has an ally on board. It’s hard to explain, but the pain I was experiencing has lessened, so I’m hopeful the drugs are in there kicking some cancer butt.
I don’t really have any philosophical musings to offer today, for whatever they are worth. I’m going to sit on the porch, drink some tea, and call my dad. And at some point, with hubby Steve’s help, de-mummify and then re-mummify my arm. Wishing you a good wrap-up (hee-hee) to your weekend.
Hello, friends! It’s been a while. There’s much to tell you, so I’ll jump right in. Lots of wonderful things have happened since I last posted in 2017, but I am sorry to report I’ve had not one but two recurrences since then. We discovered the first one in December of 2018, in lymph nodes just under my upper port scar by my right collar bone. I’d actually found a bump in July of that year and thought (hoped) it scar tissue, then asked my GP about it in September. She ordered an x-ray (what I needed was an ultrasound, but I didn’t know that) and said all was fine. It wasn’t until my December oncology check-in that I had an ultrasound and surgical biopsy, and I re-entered treatment from January to May 2019.
My husband Steve and I took a wonderful trip to Ocracoke Island in late May 2019 and had an amazing adventure in Scotland in July. In late October 2019 a small rash appeared just above the crease in my left armpit, and I started having issues with lymphedema again. A biopsy in late November confirmed that the cancer had metastasized to the lymphatics of my skin, and I re-entered treatment the day after Christmas, December 2019.
I wrote about the first recurrence on a Caring Bridge site; I was teaching and working through daily radiation, and I wanted to be able to give updates without feeling like I had to be “writerly.” If you are interested in the details of that time, please look me up there. When the cancer returned again late last year, I was so overwhelmed and sad that all I could muster was writing in my journal, for myself. Honestly, I think I was tired of this being the story I had to tell. To complicate matters, a couple of months into treatment (a combo of immunotherapy and Abraxane, a new form of Taxol), along came the coronavirus. There’s been a lot to process, and it’s only been in the past few weeks I’ve felt able and desirous of opening that process back up to others. I hope sharing my story is helpful, especially now that so many are faced with health challenges and the deep uncertainties they bring. So, here we are.
A recap of this latest round: as the coronavirus pandemic intensified in the spring, we discovered through a CT scan on April 15th that the immunotherapy I’d been on since late December wasn’t working as well as it needed to; the cancer had spread to a few additional lymph nodes. That was a big blow. I received no treatment for several weeks while we waited on some test results that could give us insight into other treatment options. One of the hardest parts about the current recurrence is that, as my oncologist says, we have a front-row seat: with the cancer being in my skin, I could see it, while we waited, as it progressed across my chest and down my abdomen. I began to experience increasing pain and swelling and began having problems swallowing, leading to several endoscopic dilations. It was all terrifying.
I had a consult with my oncologist the first week of May to discuss the test results and next steps. Because of the coronavirus, only patients were allowed in the cancer care facility, so Steve could not accompany me. I shook with anxiety. I can always tell if the news will be good or bad by my oncologist’s demeanor when he enters the exam room. That day he entered smiling and appearing almost…chipper? Steve was on speakerphone. “You seem cheerful,” I said to Dr. K. “Why are you so cheerful?” “I am,” he replied. The FDA, he said, had just granted expedited approval to a targeted-chemotherapy drug that had been in clinical trials for the treatment of advanced triple negative breast cancer. The approval had been given on April 22nd, little more than a week prior. It was particularly miraculous news given that the test results we’d been waiting on hadn’t turned up any good options. But I could start the targeted chemo drug sacituzumab govitecan-hziy, which they’d come to call “Sasquatch” acround the office, within the next two weeks.
My first dose was on May 20th, coincidentally the day Steve and I adopted two black-and-white kittens who we named Herzchen (German for “little heart,” as he has a heart-shaped spot on his back) and Finn (after Huckleberry, as Finn is a bit of a rogue). Herry and Finn have been good medicine, too. I’m still receiving Sasquatch, which has a two-week on, one-week off dosage schedule. It can be a beast, as it impacts three out of four weeks every month, but the side effects are fairly predictable, so I’m slowly learning to work with the uneven patterns of my days. Treatment day is always rough; I’m at the cancer center at least 4 hours and receive 7 drugs alongside Sasquatch to help with side effects. I usually feel pretty crummy that evening as my body processes the influx, then I’m powered by steroids the day after, have two down days, and then start to feel good again.
It’s a lot to manage, and I’ve lost all my hair again, including my eyebrows, which I really miss. But Sasquatch seems to be working, and every day it gives me is a gift. Conventionally, metastatic breast cancer cannot be cured, only treated into remission or no evidence of disease (NED). While that is technically still true, new targeted treatments like Sasquatch and the ongoing development of various immunotherapies are changing the game so quickly and dramatically that we simply don’t know what the future holds. Cancer, like HIV, is becoming something many people live with long-term, managing it rather than eradicating it.
It’s not easy to adjust to the idea of chronic illness, or to live in a space of such deep uncertainty, and the mental and emotional work it requires is one reason it’s taken me so long to write publicly about my experiences. I remind myself that we all live with that uncertainty every day, even if most don’t have constant reminders of it. And COVID-19 has now shifted mortality to the forefront of many people’s experiences. The pandemic has added a whole other layer to my own processing, but that’s another essay for another day.
I have several things going for me—the cancer, though it’s metastasized, is still pretty much contained in the lymphatic system. The science keeps staying just one step (one week!) ahead of me, and new treatments keep emerging. I have an incredible support system and one heckuva smart medical oncologist heading up my health-care team. All things considered, I feel good. I’m cuddling kittens, making art, and writing again. Steve and I celebrated our fifth wedding anniversary in September with a trip to the beach, and I’m on sabbatical currently and finally getting rolling on some creative projects. It’s not always easy, but it’s a beautiful life.
I haven’t, at this point, decided on a regular blog schedule, and I’m cutting myself some slack on that “writerly” thing. I hope to post again soon. Until then, be well, wear your mask, and safe travels through this unpredictable world.
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!
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?