Birthday Girl

This is a happy story. Just keep reading.

This coming Friday, I will celebrate my fifty-first birthday. And make no mistake, though it will just be Steve and me at home with the cats, there will be a full-on party taking place in my heart.

One year ago yesterday, a Saturday, I was at The Stone House owned by Black Dog Salvage, preparing for my “Fifty and Fabulous” birthday party. We’d been planning the party for a while, and I was excited and looking forward to the evening’s festivities. But my joy was tempered by news I’d received two days earlier. On that Thursday I’d been taking part in an annual holiday craft fair sponsored by the women’s organization at Roanoke College. I had arranged my table of wares for sale: origami tea-light lanterns, notecards that featured prints of my watercolors, and a few original watercolor cards. I’d just gotten things set up to my satisfaction when I saw I’d missed a phone call from my breast surgeon’s office. I knew it was likely to be about the results of a recent punch biopsy from a red patch that had developed just above my left armpit. I slipped into an empty classroom, sat down in a desk, and returned the call with shaking hands and clumsy fingers. I wanted to know, but I didn’t want to know. I was worried.

Origami tealight lanterns

When the nurse practitioner came on the line, she asked me if I was sitting down. I pretty much had my answer in that moment. Then came the gut punch.

“I’m afraid I have some really bad news,” she said.

Wait, what? Even in my state of heightened anxiety, I felt like something was off in the way she was framing things. But it was all I could do to keep breathing. “Okay.”

“The biopsy does show breast cancer.”

Shit.

“I’m so sorry. I know you were hoping for a different result. We all were.”

Breathe, Sandee, Breathe. I asked her something about next steps, what tests I’d need. She told me they’d refer me to my medical oncologist, and I’d need scans, then likely chemo and/or radiation.

Then she said, “Unfortunately, most of the time when we see it in the skin, it means it’s already everywhere.”

Every cell in my body clanged like a fire engine heading to a five-alarm fire. No. No, no, no, no, no. We ended the call, and I walked, stunned, back to my exhibit table. I’d brought some paints and blank cards with me, and the only thing that saved me running screaming from the room was making art. I put my head down and started drawing, one tiny line after another tiny line, until they formed a flower. Then another. This. I can still do this.

One line after another

I kept it mostly together until I delivered a pack of notecards to a colleague I knew, though not well, on my way back to my office. She asked how I was doing, and the dam broke. She sat with me in a back room until I calmed down, then I headed to my office and on to a scheduled hair appointment. I cried to my hairdresser, who is a wizard with both hair and human. How on earth was I going to get through my party? I didn’t want it to become all maudlin and weepy. I wanted it to be a celebration. In many ways, perhaps, I needed to celebrate more than ever.

Steve was traveling on business and driving back from Tennessee that day, and I didn’t want to upset him and then have him be on the road, so I held off calling him. My parents were scheduled to arrive late that afternoon. I expected to burst into tears the moment one of them put their arms around me to hug hello, but it didn’t happen. And then something shifted in me, and I didn’t want to be the daughter with cancer. I just wanted a nice, normal afternoon, pleasant conversation, party talk. At some point I decided I would hold the news unless or until one of them asked me directly about the biopsy. That didn’t happen until after dinner, shortly after Steve came in, when we were all sitting in the living room together. My mother asked if I’d ever heard back about my test. I whispered–all I could manage, suddenly–“Yes. Yes, I did.”

November blooms–seeking the beauty

I’m still angry about the editorializing that framed the report–you don’t tell a patient “I have really bad news,” which essentially tells them “be scared” and adds to their trauma. Using I-language, something like “I’m sorry to have to tell you that…” helps the patient understand it’s not good news, but doesn’t impose emotions on them. And it was way out of line that I was told skin metastasis is often a sign of widespread disease. It was pure speculation, terrifying, and utterly unhelpful, as neither I nor my doctors could confirm or deny where the cancer was or wasn’t until I had more tests. Because of that statement, I had to do the extra labor of carrying that possible story around while I waited to know. One of the most important aspects of self-care you can exercise as a cancer patient is to distinguish what you know from the stories you might tell yourself about what you know, and all we knew was that I had a small patch of cancer in the skin above my left arm. That news was hard enough to hear without the commentary. We would later find out that it wasn’t everywhere, only in the skin and a few nearby lymph nodes.

But I was talking about celebrations, and I promised you a happy story. As my parents, Steve, and I sat in the living room that Thursday night, processing, after I’d answered my mother’s question and we’d all shed a few tears, Steve asked, “So, is the party still on?”

My answer: “Hell, yes, the party’s still on!”

And it was. We didn’t share the news outside of family ahead of time so we could focus on fun. And it was fun, and fabulous, full of friends and laughter and family and cupcakes and music and dancing. There were a couple of toasts, and as Steve spoke his, I looked around the room at all the people who’d filled my life and heart with so much beauty and joy. And in that moment, I knew something important.

I knew that I had loved, and I had been loved. And I would keep loving and being loved. And whatever else I would or wouldn’t do in my days on this earth, that was the deepest, truest, most wonderful gift. That was my story. That alone makes mine a life well-lived.

Then we all raised our glasses, turned up the music, and danced.

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