Marci Smith "just wanted to enjoy every minute she had left," said her husband, Tim. Their son is Joshua.

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Marci Smith was one of the first people featured in this column

The ultimate empowered patient, she diagnosed her own cancer

Cohen: She beat cancer in how she lived the last 4½ years

CNN  — 

It’s never easy when you get that phone call, even when you’ve known for years that it might be coming. But on Friday, I got the call that someone I loved had died.

Just five days earlier, my friend Marci and I had been making plans for our kids to go trick-or-treating together, and now she’s gone. I can’t write that Marci Smith lost her battle with brain cancer, because Marci hated that phrase. Her husband, Tim, thinks she just didn’t like the concept of losing at anything.

Actually, in my book, she beat cancer. Her disease was diagnosed when she was 43, when her son Joshua was 3 years old. Her doctor told her that statistically speaking, she had three to six months to live. That was in February 2007.

She beat cancer not just in the length of the time she survived, but in how she lived these last 4½ years. As the cancer invaded Marci’s brain and the chemotherapy poisoned her body, her spirit remained clean. She never expressed anger to me that she got cancer at such a young age and with such a young child, even though she certainly would have been entitled to.

It’s not that Marci sugar-coated her illness: Tim remembers she was scared when she got the diagnosis, and she talked to me and her other friends about the brain surgeries and the awful side effects of the chemo. But Marci lived full speed ahead until she couldn’t live anymore. She knew cancer would ultimately end her life, but she didn’t let it ruin the life she had left.

“She was such a happy, positive person,” Tim told me after her death. “She just wanted to enjoy every minute she had left. She never wanted to talk about ‘what happens if I die.’ ”

Instead, Marci planned for life. She’d always wanted to visit all 50 states, and so over the past four years, she and Tim and Joshua visited the states she hadn’t been to yet. She wanted to see Israel and Scotland, too, and the three of them took trips there. When a teenage family member needed her help, she took him into her home, since helping family and friends meant everything to her.

Marci taught me so much about living, and so much about being a smart patient. She was one of the first people I wrote about when I started the Empowered Patient column shortly after her diagnosis, and our frequent discussions about doctors and hospitals and treatments and choices have informed my writing since. Marci was the ultimate empowered patient, as she diagnosed her own cancer.

When her cancer was first diagnosed, doctors told Marci she had leiomyosarcoma, a particularly rare and aggressive form of cancer. A licensed practical nurse, Marci looked up the diagnosis online and called to tell me that something sounded strange – she had the leiomyosarcoma only in her brain and nowhere else, and such leiomyosarcoma cases are so rare, they get written up in medical journals. Plus, people with leiomyosarcoma often have had diseases like HIV, or have had lots of radiation earlier in life. Marci had neither.

Her oncologist wanted Marci to start chemo right away, but she refused. Instead, she and Tim flew to a hospital in Florida that specialized in sarcomas, where they confirmed she didn’t have leiomyosarcoma, but rather a much more common type of tumor, a glioblastoma multiforme.

If Marci had simply accepted her first diagnosis, she would have received the wrong treatment and most likely would have died quite quickly. She lived for 4½ years – she lived to see her son’s seventh birthday – because she was smart and she trusted her gut, the most important part of being an empowered patient.

Marci was in her kitchen the last time I visited her, surrounded by Tim, Joshua, her mother, and aunts, uncles, cousins and friends. The weekends at her house were like that, as she sustained a community for herself, her husband and son. I’d never seen a house so full of life in the face of death, but that’s because Marci embraced all that was good no matter what horrible things lay ahead.