'Why not me?': Sandi Essner talks cancer treatment

Sandi Essner avoids the term “cancer warrior.”

“I’m not a fighter,” she said. “It’s not about the fight. It’s about, what can I endure? What can my body endure?”

To say her endurance has been tested is a massive understatement. Since her diagnosis of stage 4 ovarian cancer in 2016, Essner is on her fourth round of chemo, and has undergone numerous surgeries. She thinks she’s had 36 treatments but that number might be off by a few.

Essner lives in Cape Girardeau with her family. Her treatment is through Siteman Cancer Center in St. Louis, a teaching hospital — where treatment methods are explored, where standard of care is established.

Diagnosis

Sandi Essner is shown during cancer treatment in this undated photo.Photo courtesy of Sandi Essner

“Ovarian cancer is definitely a specialty,” Essner said.

Ovarian cancer is silent. It whispers. There isn’t much research on early diagnosis, because most diagnoses aren’t made until stage 3 or 4, Essner said.

Her initial diagnosis wasn’t correct.

“I kept getting bladder infections,” she said, and after an episode where she couldn’t breathe and thought she’d had a heart attack, she went to the emergency room and got a lung cancer diagnosis.

Other family members had received cancer diagnoses, so Essner went ahead with a genetic test.

Not only did it determine she does have a genetic predisposition, but it was helpful to her medical team for targeting treatment.

Her second opinion showed advanced ovarian cancer, with a heavy tumor load in her abdomen.

Her cancer marker, ca125, was over 3,300.

Normal is between 0 and 35, Essner said.

“The doctor was brutally honest,” Essner said. “I could be treated but not cured.”

Advice

Sandi Essner on the job in a pharmacy Jan. 1, 2016, before her diagnosis.Photo courtesy of Sandi Essner

Every cancer is different, even if it’s the same on the surface, Essner said.

“I am very careful about giving specific advice. I always preface it,” she said.

Essner said getting tested for genetic predisposition is important, and has become less expensive in recent years, so she encourages people to talk about it with their physicians.

Her diagnosis was a shock, but, she said, “it’s not about me. People ask, ‘Why me?’ I ask, ‘Why not me?’”

Essner had risk factors but didn’t know it. Family history was one. Endometriosis was another.

Essner has an adult son and she and her husband, Chris, adopted two younger children later on. She’d had difficulty getting pregnant, she said.

But soon after the initial shock subsided, Essner worked to find meaning.

Sandi Essner, center, in an undated family photo prior to her diagnosis.Photo courtesy of Sandi Essner

Awareness and treatment

“I want to spread awareness and get into as many drug trials as I can,” Essner said.

Essner said she appreciates the opportunity to participate in drug trials, because even if she’s in the group that receives a placebo, she’s receiving regular care for her cancer, and additionally is helping researchers gain more information about how ovarian cancer behaves.

And spreading awareness, for her, comes in the form of speaking at fundraisers, doing interviews, appearing on podcasts, and riding in Pedal for a Cause — a fundraiser for cancer research.

Her doctor at Siteman asked her to participate in the latter.

“She said, ‘You can do this.’ She had hope in me,” Essner said.

And, research into cancer has to be funded, Essner noted.

She’s involved with SLOCA, St. Louis Ovarian Cancer Awareness, and has spoken before the St. Louis Men’s Group Against Cancer, among others.

Doctors write grants, but it’s a competitive process, Essner said, and it’s a lot of work.

The trial she’s in now is funded by a grant that had to be submitted to seven places before it was accepted, she said.

Her cancer is difficult to target with treatments, too, she said, because while immunotherapy works well against blood cancers, cancers with solid masses, such as hers, is more complicated.

“Chemotherapy is really designed to go after the first, most aggressive cancer growth,” Essner said. “But seed cells, they’re hiding in the foxholes.”

Aggressive treatment has drawbacks, too. It takes a toll on the body and energy levels to receive the treatments, and if a patient has to drive to appointments, that can be a concern, too.

“I had to think about my kids,” she said.

Sandi Essner rides in a Pedal the Cause fundraising event in 2017.Photo courtesy of Sandi Essner

The future

But, Essner said, “Besides my stage 4 cancer, I’m actually in pretty good shape.”

After her diagnosis, she went into planning mode, Essner said. She’s bought a grave site, has planned her funeral.

“People think it’s dark, that I’m quitting, but no, it’s not that,” Essner said. “It’s knowing it’ll be a challenge for my husband when I’m gone. Being a single parent will be challenging. If everything is planned, he can get through it and move on.”

She struggles with her emotions, too. Jealousy at the thought that her husband and family will move on after she’s gone. Situational depression over the enormity of her diagnosis and treatments. But that’s part of it.

“I do my ‘drive and cries,’ and then I’m good,” Essner said. “I don’t want them to remember me as a basket case.”

Sandi Essner leans against one of the largest and oldest American beech trees in Missouri at River Campus Park on Sept. 18. "We are both trying to stay alive," Essner said in reference to herself and the tree.Sarah Yenesel ~ Southeast Missourian

But, she said, as a cancer patient, if you live long enough, you have bad thoughts.

“I am so lucky I am living, I am making a difference,” Essner said. “I don’t know how long I have. Right now, my cancer marker is dropping. I’m responding to treatment. I do little goals. I don’t do big ones.”

Essner said she is trying to avoid hearing words such as palliative, hospice, maintenance.

“I don’t think of it as giving up, giving in,” she said of the end. “I think we are endurers. I’ve endured what I could to get through it. There’s no shame in stopping treatment. It’s selfish to say a loved one gave up. You’re not in their body. Some people don’t respond as well to treatment.

“Is someone more brave when they decide to go through treatment again? Absolutely not,” she said. “I think it’s disrespectful of the human spirit to think that way. I think everyone comes with their own ability to endure.”

Luckily, she said, she has a high threshold for pain, and her background working in the medical field in a pharmacy gave her a knowledge base and experience with families whose loved ones were going through exactly what she is going through.

“For me, most days, I’m very hopeful,” Essner said. “I can instill values in my children that will live on long after I’m gone. I got to live to see my adult son graduate college.”

It would be great to make it to her 21st wedding anniversary next year, she said, but “I’m already in the bonus round. Four years, three months. I’ve had four great years, at times bad and troubling, but even with the treatments, the uncertainty, overall, I would do it all over again. I’m grateful beyond words.”