‘Pain and joy are all part of being human,’ says my friend Sofia Edmonds in Part 2 of her inspiring story

(You have reached the second part of Sofia’s story. And here’s a link back to Part 1 of the story.)

Physically fit, a healthy eater and exercise devotee, Sofia had run in several marathons. She’d been three minutes short of qualifying for the Boston Marathon.

But, then, her energy began to wane, she felt sad and began losing weight. Smells made her nauseous. In September, 2020, during the pandemic, she went for a blood test.

Sofia’s doctor read her bloodwork. “Oh, my God,” he said.

He sent her to Dr. Sam Shaheen, whom she knew. Dr. Shaheen reviewed her results with Sofia and Ron and became choked up.

Sofia and Ron were crying, too.

Previously the quintessence of health, Sofia was diagnosed with stage IV cancer.

“It was like being hit in the head with a bat,” she says.

But Sofia was accustomed to analyzing data and finding solutions. “What’s next?” she said.

A biopsy of the liver.

“Can we do it today?”

“I’ve never been asked that,” Dr. Shaheen said. “But Iet me make some calls.”

Returning, he asked what Sofia had eaten.

“Half a banana. At 11.”

A biopsy took place that afternoon.

Like me, Sofia initially was diagnosed with Adenocarcinoma. There were tumors in her liver, abdomen, lungs and intestines. By the end of the week, she’d had a mammogram, colonoscopy, endoscopy and more tests, but the source was unknown. She was deteriorating day by day.

It was October, 2020. The Mayo Clinic and MD Anderson were ready to admit her. Because of COVID, MD Anderson insisted she undergo treatment alone. Mayo allowed one person to accompany her, so the choice was clear. Ron accompanied her to Mayo. Several additional tests provided no clear result.

With Ron by her side, Sofia underwent many different chemotherapies. They included Gemcitabine, Cisplatin, Folinic acid, Flourouracil and Oxaliplatin. One treatment required wearing a pump. Infusions lasted up to two days.

Sofia continued to deteriorate. By the end of November, her liver was 90% destroyed; there were tumors in her lungs, peritoneal area, lymph nodes and uterus. Her swollen stomach caused excruciating pain, but her condition was too poor to risk draining the fluids.

Losing a pound a day, Sofia had stopped checking her weight. “It was too traumatic for my whole family.” By December 24, she was bedridden.

All hands were needed on deck. Her sons, future daughter-in-law, mother and two sisters came to Northern Michigan to look after Sofia. Due to the pandemic, after their flights, they quarantined for 12 days.

“I was so weak I didn’t dare close my eyes,” she recalls. “I was afraid I wouldn’t wake up.” For two nights in a row, to stay awake, she played golf, in her head, at Midland CC.

The smell of food made Sofia nauseous. Her family took turns cooking, in a crockpot, outdoors in winter. Oatmeal was all she could tolerate. Sandra, a friend from Midland, frequently boiled beef bones for 24 hours to create a broth and drove 2 and ½ hours north to deliver it. Ron lost so much weight worrying about Sofia that he, too, looked sickly.

“While Andrew played the piano, Dave rubbed my feet,” she says. “That was one of the few beautiful memories I have from that nightmare.”

Finally, Sofia was diagnosed with Cholangiocarcioma, cancer of the bile ducts—a disease that usually kills within four months. Sofia was still alive—but barely—after two months.

Sofia’s doctors realized “there was little hope.” Her oncologist gave her a choice. Continue with chemo and add a new immunotherapy drug? Abandon chemo and simply try the latter? Or give up and call hospice?

Genetic testing indicated a biomarker that Sofia’s cancer could respond to immunotherapy. Sofia was a candidate for a treatment not yet approved for bile duct cancer. Success was unlikely, however, because by then most of her liver was consumed by a tumor.

Sofia’s choice: abandon chemo and proceed with immunotherapy. The drug, Pembrolizumab, hadn’t been approved for bile duct cancer. But after about a week of infusions, the pain in her stomach, and the swelling, started to decrease.

By the middle of January, 2021, Sofia was feeling better. She was able walk the driveway. “Ron had the brilliant idea to bring me to Florida so I could walk outdoors.” Because of COVID, they didn’t dare risk flying.

On the drive to Florida, the couple stopped in Midland for Sofia’s infusion of Pembrolizumab. Word of Sofia’s visit had spread. The cancer center parking lot was packed. To Sofia’s surprise, about one hundred friends stood in a long line, holding signs of love and support.

In Florida, Sofia felt better each day. She resumed swimming and working out. Her liver regenerated and she could eat normally. She continued with infusions every three weeks and frequent scans.

At the end of 2022, a new tumor appeared in her liver. It was surgically removed. She continued her immunotherapy. In December, 2023, cancer appeared in her lymph nodes and was treated with radiation.

In April and July of this year, Sofia’s scans were clean. Likewise in July. Originally approved for lung cancer, Pembrolizumab has since been officially approved for bile ducts.

Sofia’s philosophical about what she’s been through. “Pain and joy are all part of being human,” she says. “Getting through difficult times makes us appreciate the beauty of life.”

Sofia’s had seven different oncologists. All of them referred to her as “a miracle girl.” She’s graduated from immunotherapy infusions every three weeks to every six weeks.

“I was just lucky there was a treatment,” Sofia says. “At the advanced stage of my illness, if I’d been sick two years earlier, there wouldn’t have been.”

Sofia’s back to exercise and golf. She has a lovely new daughter-in-law, Dani, who’s an “excellent” nurse. Last summer Sofia and Ron hosted 120 people at a joyful dinner on their back lawn the night before Andrew and Dani’s wedding.

To top it off, “on the spur of the moment,” this past June, Sofia ran a 10k.

Thanks, Miracle Girl, for sharing your story. For your determination and candor. And for the hope you inspire in all of us.