Amazed

It’s a cold, drippy February afternoon. I’m ensconced in what I’ve come to call my “nest,” a spot on the living room sofa where I spend much of the two-ish days after each treatment when I feel sluggish and sad. Something about this chemotherapy drug, or the several side-effects-mitigators administered alongside it, sends my mood plunging along with my energy the second and third days post-infusion. I’ve tried to learn to roll with it, give myself permission to rest, curl up with a blanket and a good book for distraction. Yet I often feel guilty and antsy, frustrated by my lack of focus and inability to will myself out of my funk.

Hanging out in my nest

It’s fecund breeding ground for brooding, and today my thoughts are vacillating between “the human body is a strange and wondrous organism” and “what fresh hell is this?” To wit: I’ve been dealing with persistent hoarseness going on two months now, and on Tuesday I saw an ear, nose, and throat specialist to see if we could get at the root of the problem. I’ve also been having issues with swallowing, and in the past year have undergone repeated endoscopic dilations, the last one just a few weeks ago. My hoarseness mysteriously disappeared for two days right after the latest endoscopy, but then returned. On the morning of my ENT appointment, I almost choked on a vitamin tablet. It all seemed like it must be connected, somehow.

After listening to me describe my history, the ENT doctor asked if I’d had a recent CT scan of my chest, and “whether it showed any mediastinal lymphadenopathy.” Translation: enlarged lymph nodes in the chest. He suspected that my left vocal cord was paralyzed, possibly a result of enlarged lymph nodes pressing on the recurrent laryngeal nerve, which loops down under the rib-cage. I was surprised that a problem with the lymphatics in my chest could be responsible for issues in my throat, but it’s not the strangest detour my body has taken along this path. A paralyzed vocal cord would explain the hoarseness as well as the swallowing issues, since the vocal cords close during swallowing as well as speaking. If folds on either the left or right are paralyzed, the resulting gap can cause vocal changes and aspiration. Who knew?

The doctor showed me a diagram of what my larynx should look like in both its open and closed positions, then threaded a tiny camera attached to a long, flexible tube through my right nostril and into my sinus cavity so he could take a look at my larynx—uncomfortable, but not much worse than a Covid test. He situated the screen so I could see the camera feed, too, and there it was–my voice box. He asked me to say “eeeeeee,” and while the right side of my larynx flexed closed, the left side only moved a tiny bit toward the center, leaving a sliver of open space in the middle.

Image from https://www.childrens.health.qld.gov.au/fact-sheet-vocal-cord-palsy/

It was strangely satisfying, after so many years of scans and biopsies with days or weeks of lag time between test and diagnosis, to see and identify the problem so quickly and definitively. I’m trying not to be too anxious about possible underlying causes for the paralysis. My November CT showed the cancerous mediastinal lymph nodes had shrunk since the previous scan; it is a bit concerning that they may have enlarged again, although inflammation could be a result of a robust immune response. It’s also possible, given my history of radiation and the fibrosis that has developed, that one or both of those have injured the recurrent laryngeal nerve; injury can also occur during endotracheal intubation, which I’ve had my fair share of in the past year.

The treatment for a paralyzed vocal cord is a bit less straightforward than diagnosis, although sometimes the problem simply resolves itself over time. Medically, the impact on swallowing is considered more urgent than vocal changes, so I’ll undergo a “swallowing study,” which as best I understand is me swallowing a series of barium-infused substances of different consistencies while they x-ray the process. Yum. I’ve also been referred to a voice doctor. The likely treatment is injection into the cord of a filler similar to those used in cosmetic procedures to plump it up. For someone who doesn’t like a lot of stuff happening around her throat, the prospect of this procedure both fascinates and horrifies me.

Dealing with a chronic illness means you get all kinds of anatomy lessons you never anticipated (or wanted), many of which fall into the “stuff I never knew could happen” and “wow, bodies sure are weird” categories. I’ve always loved learning new things, so I’ve tried to embrace my innate curiosity, use it as a kind of coping mechanism. That’s more challenging some days than others. Still, whether it tracks the emergence of a new virus or the development of the vaccine that tames it, the science of life astounds. One might as well be amazed.

Inside, I hunker down into my nest, cup of hot tea in hand. Outside, the rain has shifted to sleet. Ice coats the trees, lacquering their black satin branches. They shine against a gray flannel sky.

The Lay of the Land, Autumn 2020

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.

At Stirling Castle in Scotland, July 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.

Back in the ring

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.

Finn and Herry

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.

Celebrating our fifth wedding anniversary on Ocracoke

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.

Getting some love from Herry