Trust Yourself: It Could Save Your Life

CLIENT SPOTLIGHT: SAMI LEONARD

Sami Leonard didn’t want to be right — not about this. 

It was February of 2020, and the then-28-year-old nurse from Ohio had been telling doctors for the past year that something was wrong. She knew it from the intense pain in her stomach and shortness of breath. It hurt too badly to eat — she’d lost almost 70 pounds in a matter of months.

“I began to feel crazy,” Leonard said. “Like many women, my journey entailed struggling for a diagnosis.”

Finally, an oncologist from James Cancer Hospital & Solove Research Institute in Columbus listened to Leonard, and a biopsy confirmed her instincts that something was wrong — very wrong. Leonard was diagnosed with Stage 4 ovarian cancer, specifically Peritoneal High-Grade Serous Carcinoma. The CT scan she had long been fighting to receive revealed tumors wedged between her liver, diaphragm, lungs and ribs. Leonard was right, and she wished more than anything that wasn’t the case.

As she lay on the gurney on that winter day, trying to process this news, she remembers her body going numb. 

“It just felt like everything crashed around me,” Leonard said. “I thought to myself, ‘Oh my god, I'm not crazy.’ This is the one thing I didn’t want to be vindicated about.”

FIGHTING FOR A DIAGNOSIS

Leonard, now 30 and a client of Pink Ribbon Girls Columbus, was too young to have cancer — at least that’s what doctor after doctor seemed to think when she presented them with her symptoms. The signs were typical for ovarian cancer: Pain and bloating in her abdomen. However, Leonard’s bloating was less pronounced because of her rapid weight loss, as the tumors made it too difficult for her to fill her stomach with food or her lungs with air. They were also pressing against nerves, causing pain to radiate around her abdomen. 

Leonard’s suffering had been dismissed by so many doctors that, by the time she encountered the right one willing to investigate, she felt jaded — conditioned to expect that she’d be turned away once again without an answer. 

“I said (to the oncologist), ‘I just want to go home and, honestly, I know you're just going to tell me I'm crazy,’” Leonard recalled. “I remember the way that he sat down and said, ‘Please let me give you some pain medicine. Something's there.’”

A LONG ROAD AHEAD

Unfortunately for Leonard, getting a diagnosis was just the beginning of her battle. As a nurse, she had bleak insight into what it meant to have Stage 4 cancer, so she asked her doctor to be direct with her about her prognosis. 

“By medical standards, Stage 4 cancer is terminal,” Leonard said. “I told him, ‘I just need to know what my reality is,’ and he looked me right in my eyes and said, ‘If we don't start quickly and aggressively, this will kill you.’”

Leonard was diagnosed on a Friday, and she began chemotherapy Monday of that following week. She fell asleep during her first treatment only to wake up in the middle of it feeling unusually hot. She noticed her skin was red and her tongue felt strange — signs of an allergic reaction. Doctors slowed down the infusion so she was able to tolerate it that day. However, the next two times she went into anaphylactic shock.

With an adjusted combination of chemo drugs, Leonard underwent three months of treatment only to learn her tumors had hardly shrunk at all, sentencing her to another three months of chemotherapy. These rounds proved to be more effective, as her scans showed the tumors had diminished in size enough to potentially be removed through surgery. 

Leonard’s operation was scheduled for September 25, 2020, and her years working in the hospital’s post-anesthesia care unit did nothing to ease her anxiety about it.

“I knew too much before going in,” Leonard said. “I knew how everything was supposed to go, and I knew everything that could happen.”

‘THE SCARIEST EXPERIENCE OF MY LIFE’

Leonard also knew how long she was booked in the OR and that she was the first patient of the day. So, when she woke up in a dark room hooked up to a web of tubes with two nurses standing over her, she understood — once again — something was wrong. 

“I thought, ‘That’s not OK — they don’t usually have two nurses here unless you’re an ICU patient,” Leonard said. “All I could think was, ‘What happened?’”

Leonard asked the nurses for the time once she was finally able to speak. It was 6 p.m. — she had been under anesthesia for 12 hours. She then learned that was because she had hemorrhaged while they were removing her tumors and they struggled to stabilize her, significantly extending her time on the operating table and increasing her risk for life-threatening complications.

Leonard spent another week in the hospital, including two more days in the ICU, before being discharged. That terrifying experience of waking up from surgery in the dark — literally and figuratively — was about to be topped by an even more harrowing ordeal that began with an influx of pain in Leonard’s pelvis two days after she arrived home. 

Emboldened to follow her instincts by this point, Leonard told her mom she needed to be taken to the hospital immediately. 

“My mom started freaking out, and I said, ‘You need to calm down, take a breath and call 9-1-1,’” Leonard said. “‘Tell them they need to take me to (James Cancer Hospital).’”

By the time Leonard was in the ambulance, she said her level of pain had surpassed a 10 on the standard scale often used by doctors to assess the urgency of a situation. She remembers overhearing a phone conversation between the EMT at her side and a nurse on the other line, who was instructing that Leonard be taken to triage for evaluation. Leonard was certain there wasn’t time for that. 

“I said, ‘You get that nurse back on the phone and you tell her I need a room with a doctor when I roll in,’” Leonard said, to which the EMT replied, “‘I couldn't agree more.’”

When Leonard arrived at the hospital, she was rushed in for an ultrasound for evaluation of her abdomen. An aneurysm that developed along her incision had blown. The last thing Leonard remembers as she began to pass out was the doctor observing out loud, “There’s a moderate amount of blood in her abdomen.” 

“‘Oh god,’” Leonard remembers thinking while fading into unconsciousness. “‘I'm bleeding out from the inside.’”

When Leonard awoke in the hospital this time, her mom was there. For once, Leonard wasn’t able to fully piece together the context clues to form an accurate conclusion about her status — something for which she’s grateful. 

“Thank god I didn't know enough why my mom was there,” Leonard said. “In a COVID world, they wouldn't have pulled her in unless they thought I was going to die. … 

“That was probably the scariest experience of my life.”

A NEW APPRECIATION FOR LIVING

Leonard wasn’t spared from further complications that delayed her restarting treatment, such as the development of an ileus — an obstruction of the intestine — in the surgical site infection. She eventually began another six months of chemotherapy that she’s still in the process of completing. 

Leonard recently experienced another scare when pain returned in her right upper quadrant where her cancer used to be. Scans revealed another mass had developed on her liver. Fortunately, this one wasn’t cancerous — at least not yet — but her oncologist has warned that could quickly change. 

“That's just the nature of cancer,” Leonard said. “My oncologist is very direct in how he uses his words so, at this time, he hasn't declared me cancer-free, and I still have that mass knowing it could become cancer or maybe is already. 

“I'm trying to not dwell or lose time on lamenting what it is so I can just enjoy what I have.”

After everything cancer has put Leonard through, she has what she calls a “strange” appreciation for what it has taught her about life. She said confronting your own mortality on an everyday basis changes you in a way others who don’t live with that level of uncertainty can’t fully grasp. 

“Before cancer, I used to say, ‘The days drag on but the years fly by,’ and I never really understood that until I had death in front of me,” Leonard said. “Every time I'm trying to go past the next obstacle, the ground behind me is just quickly falling. It's pushing me forward, but it's also taking away the opportunity for me to enjoy the moment in front of me.

“I've really had to remind myself that, if I worry about the pain of tomorrow or lament the pain of yesterday, all I'm ever going to do is take away the joy from today."

‘YOU’RE NOT ALONE’

Leonard doesn’t enjoy rehashing some of the worst moments of her life — it stirs up a lot of painful memories and anger about being written off for so long. If someone had believed her sooner, would they have caught her cancer early enough to spare her from a year and a half of brutal treatments and surgeries?

Then there’s the fact that Leonard is a bit of an anomaly: Most women don’t get diagnosed with Stage 4 cancer at age 28. That reality has made her journey feel unbearably lonely at times — and that’s exactly why she chooses to tell her story, even when it hurts to share.

“When I was diagnosed, my light went out — I was in the darkest place I ever thought I could be,” Leonard said. “If I can remind someone else that it doesn't mean it's over if your light went out for a little bit — and if I can help them rekindle that light — that's a damn good day for me.”

Leonard has relied on many sources of support to navigate through her darkest days. That has included her family, her oncologist and the nurses who remained so steadfastly positive even when Leonard didn’t feel like joining them in looking on the bright side of cancer. 

Another source of light for Leonard has been Pink Ribbon Girls. She became a PRG client last summer and has continued to utilize the free services of receiving healthy meals and rides to treatment — a major relief when cancer leaves her feeling too weak to cook or drive. 

Above that, though, what Leonard cherishes most about PRG are the relationships she has made with other survivors through the organization’s networking opportunities. 

“I wouldn't wish (cancer) on my worst enemy, but since life has put me next to this other woman who I can follow and communicate with as we go through our own battles, that's good for us,” Leonard said. “I would tell other women who are battling cancer you’re not alone. There’s someone out there who is willing to help you or guide you through this — someone like me, or like other women, or like Pink Ribbon Girls.”