Three Weeks in December

In my crowded triage room, I hear the emergency-room physician say, “Trauma blood, STAT!”

I have been rushed to the ER after throwing up liters of blood at home. I have GI bleeding.

I’m tipped back on the gurney, head lower than my limbs, with my mean arterial pressure in the low mid-60s. Paddles are ready; transfusion begins.

Two days later, I undergo an endoscopy. Is it ulcers? Something else?

They find a mass on the inside of my stomach. To get more clarity, the next day they do an ultrasound endoscopy.

They confirm that it’s a gastrointestinal stromal tumor, or GIST—a soft-tissue sarcoma. I’m told it’s rare. No one has said “cancer,” but they did a biopsy, and we must wait several days for the pathology results. Next, a CT scan to see if it has spread.

This does scare me. How do you catch a thief who might be hiding in multiple locations? I hope there’s only a single intruder—one that can be surgically removed, or “resected.” (I start using medical lingo.)

My brain starts calculating the future. This might be cancer, and that means diagnosis, treatments, maybe surgeries, maybe chemo—or maybe worse, just ongoing treatments and dying way too soon.

I decide to stay present in my body, not to give up yet to an unnamed disease. I’m grateful for the medical system around me; the first transfusion may have saved my life. I want to partner with my caregivers through whatever’s coming.

I focus on deep breathing, massaging the heart. The blood loss, the transfusions, the endoscopies, the blood draws, the anesthesia, the stress and shock of the C word—all are taking a toll on my heart. I give it breath, softness, space. And movement, always, even if it’s just my toes wiggling and my fingers stroking the blanket’s edge. Movement keeps me present.

I wrestle with “cancer” as part of who I am. What’s the possessive—it has me? I have it? It is something in me. I’m getting rid of it. “They” are going to get rid of it. But it is not who I am.

The CT scan shows that the mass is localized. There’s no metastasis–this was my greatest fear. I’m relieved. Also worried: What if they missed something?

Throughout the next three weeks, we hear about the “team”—a group of doctors who get together and talk about me. There is an oncologist, Dr. Tin; a surgeon, Dr. Lima; and his assistant, Dr. Peterson.

At first, we speak only with the hospitalist. He says that the surgeon would like me to start imatinib, though there are insurance hoops to jump through. The drug should shrink and harden the tumor, making surgery less invasive. And it “might” stop the bleeding. I’d go home, get the meds and come back in a few months for the surgery.

Dr. Peterson drops by in her scrubs and tells me that surgery will remove my whole stomach along with the tumor.

Whoa. That was a “Say what? Tell me more!” moment.

“Yes,” she says. “There’s some adjustments to how you eat.”

Five days into my stay, my hemoglobin gets to an acceptable level. I’m sent home to await the pathology report, the imatinib and a plan from the medical oncologist and surgeon. I’m given the discharge papers with the usual “If you experience nausea, diarrhea, fainting…call the doctor or go to the ER.”

“Any questions?”

I’m full of questions. And I’ve no idea how—or who—to ask.

Four days later, at home, I vomit blood again. ER again. Dizziness, blacking out. Blood pressure and hemoglobin drop precipitously. Transfusions again.

The pathology has verified the GIST diagnosis, so this time I’m admitted to the cancer hospital.

The doctors who round on me each morning are not on the “team.” One is a urology oncologist, and the other is a resident in anesthesiology. I call them Dr. Maybe and Dr. Perhaps:

“Maybe you can start imatinib.”

“Yes, that’s been talked about,” I reply. “What are the side effects?”

“We’ll get a pharmacist.”

And “Perhaps interventional radiology to buy time.” That’s a new one.

Also, vapidly, “How are you?”

Well, um….

And “Can I feel your stomach? Any pain?”

There hasn’t been pain. I ask them to figure out what has caused the bleeding, how to stop it—and what about surgery?

“We’ll take that back to the team.”

It’s a strange, disjointed feeling: my body lying on this bed, and those people talking about my body in some other place. Meanwhile, scheduling protocols are impeding our ability to actually meet our oncologist and surgeon.

Two days later, I have another massive throw-up of blood. I’m stabilized, monitored. But the frustration crystalizes for my husband and me.

Speaking firmly, we tell Dr. Maybe and Dr. Perhaps: “We need a guarantee that, if I were sent home with imatinib, we wouldn’t have another trauma episode taking us to the ER.”

“We’ll take that to the team,” they say. Two days later, I finally meet the surgeon, Dr. Lima.

“What resonated with me,” he starts, “was your saying that you needed a guarantee that you wouldn’t face another bleeding episode. But there is no guarantee. It could happen again.”

He is convinced that just getting it out is the thing to do; otherwise, I will continue to bleed. My husband and I agree. The OR is reserved for the next day.

The next morning, I wake with an overwhelming rush of emotion—waves of love for my husband, sons, family and friends. I’m whispering, crying. I’m thanking and conversing with God, the universe. I see that my life has a capacity for action and love that hasn’t yet been fulfilled. This prayer wells up out of me without any thought. I feel a deep sense of being in this moment—and as I move forward into the day, I resolve not to forget the preciousness I’ve been allowed to glimpse.

Surgery goes well. Only partial resection of the stomach. Two days in bed, three days up and moving, vitals stabilizing. To be present with my body, I ask only for Tylenol.

I go home on Christmas Eve. Two weeks later, the pathology shows a very low mitotic rate (the speed at which cancer cells divide) and a low risk of recurrence.

I’m one of the lucky ones.

The bleeding led to the discovery of a tumor that could have been missed for years. Although I endured two weeks of indecision, confusion and poor communication, in the end the tumor was expertly removed. I may be labeled as cured.

I consider it a blessing, now, having cancer haunt my body. I am changed. My body is less predictable, more mysterious than I know. I am doubling down on living my remaining years emboldened, productive, loving and alert. And I’m thankful for the brilliant, complex and imperfect medical system.

Postscript: Dr. Peterson’s prediction was exaggerated. With only a partial stomach resection, my diet is normal again, and I have recouped the abdominal muscles that were cut away for the surgery. I am a dancer, after all.