Mayday! Mayday!

Living with Cancer, not Dying from it, but it gets Hard Sometimes, but I Persist.

Mayday! Mayday!

I know it’s the first week of June, but I began writing this post in May. I’m sure I put it off because this isn’t the easiest anniversary to relive.

I keep my cancer time with this fair that rolls around every May. Six years ago, I was physically struggling but Amber, Julian, and I went to a fair anyway. I was kid-like in my glee. I wanted to go, so we got in the car and drove to Heritage Park for the fair. We had a great time, but when it was time to leave, I couldn’t make it back to the car from the fairgrounds—only a 400-to-500-yard walk. This put a serious dent in my pride. I was used to walking 3 to 4 miles three times a week. But on that day, I became winded after walking maybe 100 to 150 yards. I felt like I was moving underwater. Each leg felt as though it was weighed down, heavy and hard to lift. I told Amber I needed to rest under a tree just outside the entrance. We sat in the shade for at least 30 minutes. That was rare for me.

You see in these photos at the fair, I was giving my all trying to have a goodtime anyhow. I was beat. I did not know my life would change forever after this weekend. When I look back, I am glad we had this window of togetherness and fun.

When I gave the “I’m ready” sign, we made our way to the car.

That Monday, I had 8:00 AM labs because I’d told my healthcare provider in April, I was experiencing fatigue and pain. I almost didn’t go get my labs because I was beyond exhausted. I had just returned from nearly a month on the road—traveling, giving readings, leading workshops. I thought I had just worked myself too hard. I just wanted to stay in bed and sleep a hard sleep for a month to recover.

It took almost a month to confirm that I had Stage III Multiple Myeloma. Since then, I’ve undergone chemotherapy and a stem cell transplant. I’m now grateful to be in what’s called “standard remission”—but those of us with this kind of blood cancer know we live with it for life. I call it the rocky road of remission.

Since my diagnosis, I’ve developed new ailments: bone pain, spinal stenosis, and eosinophilic asthma.

I always thought I’d return to my old self. That was a dangerous expectation. My goal was unrealistic and doomed me to disappointment. I eventually had to accept that I wasn’t going to return to my pre-cancer self—and instead figure out how to live with my limitations.

At one point, I had to use a walker due to my unsteady gait. I could no longer wear anything but sturdy walking shoes, which got in the way of my style. I had to give up my beloved Fluevogs.

Walking was high impact, so my long walks were out. I could no longer dance—my spine and bones were spotted with lesions. It hurt to move. But the psychological damage of not being able to dance really did me in. Dance was how I expressed myself. Even though I never said the word, I was depressed. This video marks my return to wearing Fluevogs again!

I deepened my meditation practice and returned to therapy.

Most people around me didn’t know how to help. I was often met with well-meaning but unhelpful responses:
“Oh, you look great!”
“If you hadn’t told me, I wouldn’t have known.”
“You’re going to live a long time!”
“I’m praying for you”—without asking if our spiritual paths align.
Or the one that really cuts:
“Well, we all have to die from something.”

That last one feels especially cruel when someone is actively wrestling with a life-threatening illness.

Then there are those who tell me about their loved ones who died of Multiple Myeloma. I feel for them—I do—and I try to offer comfort. But it also throws me into a deeper existential crisis. The life expectancy for my diagnosis is five to seven years. I try not to fixate on that literal deadline.

I don’t think these folks are being cruel. I believe they’re trying to show empathy. But these stories—especially around this time of year—are difficult to carry. I don’t often share how deeply this all weighed on me. I am a caretaker for so many. I keep going.

But two days ago, in meditation, I saw the stone of death. It was me—not breathing. My life had ceased. The world and the people I love had moved on without me.

It took what little breath I had away.

I cried deep tears.

Only those who have been handed a death sentence truly know this walk and this way. It is not a way of platitudes and politeness, but of truly seeing, of witnessing.

In these hard times, I double down on meditation, sleep medications, and being around people who truly make me feel loved.

This May, I attended a nine-day ancestral meditation retreat run by Peace at Any Pace. I ended the month with an unexpected joy: being awarded the Order of the Palmetto, our state’s highest civilian honor. It’s voted on by a bipartisan committee. I received the news in April from my dear friend and colleague Debra Roberts, who nominated me. She called while I was in a state park—a fitting moment of grace. I had no hope I would receive it, but Debra carried all the hope for me. It is a gift to have friends who will carry belief for you when you are flailing.

The City of Greenville held the ceremony at Unity Park’s Welcome Center. Mayor Knox White, Tracy Ramseur, and Rep. Chandra Dillard presented the award. But the most special part was having my grandchildren—Julian, Paisley, and Quinn—there. Though they didn’t understand the significance of the occasion, it felt like a full-circle moment. My favorite photo is of Quinn holding the mic like a baby poet in the making. I call her my “poet laureate granddaughter.” I was in the delivery room with her mother, Celeste, when I got the call that I would become the city’s inaugural poet laureate.

Debra, Amber, and Celeste all spoke at the ceremony. Friends and family came. Flowers and notes of congratulations poured in. It was a beautiful, buoyant day

.

So yes, May brings my cancer anxiety, my memories, my insomnia—but also moments of deep beauty.

And for that, I am grateful. I dance a little. I can wear my Fluevogs again. I have the company of people who love me. I love them. I write poetry. Publish books. Travel some. Garden. I will continue to work through these huge feelings—and balance them with the beauty in my life

My garden is showing out. Especially my gladiolus. The gladiolus bloomed just in time. As I was driving away from the house, headed to the Nikki Giovanni Memorial, they seemed to be waving at me. I stopped the car and took a picture.

Gladiolus hold many meanings for me. When I was in the fourth grade at Aviano Elementary School in Italy, our Italian teacher gave us all Italian names. Most of my classmates had names that easily translated—Mary, Charles, Michael. But when she came to me, she paused.

“Ummm… Glenis,” she said, puzzled. She thought for a moment, then finally declared: “Gladiolus.”

I never forgot that day—the day she named me after a flower.

I loved that the gladiolus symbolizes strength, faithfulness, and remembrance. That it is also called the “sword lily,” derived from the Latin gladius, meaning sword. The beauty and the fight of this flower extend their metaphorical meaning to me. I catch hold of that bloom, again and again.

I will, indeed, Bloom Anyhow.