Jade Williams and daughter Finley share a moment trying on scarves.

Jade Williams, ARNP, AGPCNP-BC, a gerontology primary care nurse practitioner at Van Diest Medical Center, has been experiencing what some of her patients have dealt with in their lives. For the past six months, Williams has been the patient, undergoing treatment for ovarian cancer.

Williams has stage 1C2 clear cell ovarian cancer, a rare and aggressive form of the disease. Because the cancer is aggressive, she’s undergoing treatment that patients in Stage 3 or 4 could expect.

“Unfortunately, this type of cancer is resistant to treatment,” she said.

The symptoms of ovarian cancer — pain, bloating, constipation, excessive urge to urinate, and eating issues – may go undetected by women, or perhaps are attributed to other causes.

“Many women don’t know they are dealing with it until its stage 3 or 4,” Williams said.

Williams admits she thought her symptoms were due to other causes. Afterall, the tall, slender nurse practitioner was healthy and was an athlete who lifted weights, ran and vigorously exercised regularly.

In December 2022, she noticed some strange health stats she received from her Apple health app. The phone app tracks many body conditions including her cardio fitness.

During the month of December, the app indicated that her VO2 max had taken a nosedive. That number refers to the maximum amount of oxygen that an individual can utilize during intense exercise. This measurement is generally considered the best indicator of cardiovascular fitness and aerobic endurance.

“I didn’t really know why that was. It went from being a regular measure of 34 to 38, to in the 20s. Anything 22 or below indicates there’s something major going on with you,” she said.

Williams did a reset of her watch. She even considered getting a new one because there had to be a glitch somewhere for those numbers to fall so low.

At the same time, she seemed to be constantly tired. She increased her intake of caffeine to counteract the fatigue, sometimes as much as 600 mg of caffeine a day.

“I was working, and I’d come home and just be exhausted,” she said.

But she was determined to power through the fatigue. She set a goal of running a half marathon in March. Training started right away — and even during a bout of Covid, she continued to work out.

“I just couldn’t accept the possibility of being lazy,” she said. “But you know, if you get your body up and moving, you usually feel better.”

Lifting weights, however, seemed to be taking too much effort. She cut back, lifting lighter weights just three days a week. She focused her attention on running and getting ready for the half marathon.

That’s when the pain in her lower back, primarily on the left side, started to bother her.

“I thought I had tweaked my back lifting weights, or it was from the running,” she said. “The pounding on the treadmill as you run can be brutal.”

She tried to look past the pain and continued to push towards her fitness goals.

“I developed a mindset that if I could knock out a two-hour run, I could do anything. I convinced myself of that. I got up at 4:30 in the morning, ran for two hours, went to work, then came home to take care of the girls and the family. I was getting maybe 6 hours of sleep at night,” she said.

Spotting was the next symptom she experienced. She chalked the spotting up to the changes she was making in her workout routine.

“Anytime you change or stress your body in a new way, we can experience hip pain or spotting, and different things like that,” she said.

She ran the marathon in March, and at the time discovered that she had gained five pounds.

The weight gain seemed impossible considering the 20-plus miles a week she was running, her weightlifting regimen and her consistent macro calorie count.

“What was happening?” she wondered. “My trainer and I talked about it again and she said that when you’re stressing your body, sometimes your body will try to hold onto that weight.”

The trainer also told her if she was concerned, she should go to the doctor.

“But of course, I didn’t,” she said.

She thought after the marathon was over, perhaps her weight would normalize. But instead, she began to feel bloated.

“Once again, I went back to the drawing board and added more fiber to my diet instead of stepping back and really evaluating what was going on,” she said. She increased the amount of protein she was eating and boosted her water intake to over 100 ounces a day. With that, she also added in a stool softener to counteract the constipation she started to experience.

“So, I had just willed away all five primary symptoms of ovarian cancer – bloating, pain, constipation, urination and eating issues,” she said.

Health app alert

In May 2022, her health app alerted her to unusual conditions. She received a notification indicating that there might be something wrong and it provided a document outlining all the symptoms. The app encouraged her to make a doctor’s appointment and recommended she take the document of symptoms with her.

“This was amazing to me that the app could do this. As a provider myself, I willed away all the things I was experiencing, and my phone is the one thing that was telling me I need to get this checked out,” she said.

She made an appointment at the Gabrielson Clinic with provider Valerie Martin who specializes in abnormal issues, perimenopause and menopause. Tests were arranged for the end of August, including an abdominal ultrasound, an intravaginal ultrasound, a uterine biopsy and some blood work.

During the abdominal ultrasound, Williams said she was chatting pleasantly with the technician but when the intravaginal ultrasound began, she noticed a change in the technician’s demeanor.

“I remember trying to see the screen and what she was seeing. I looked up and saw my right ovary was just like broken open and spilling out the stuff. There was a bunch of fluid. On the left ovary, there was this concentric mass,” she said. “I knew this must be something terrible.”

Waiting for the provider in the exam room, she did the one thing she’s told her patients not to do — she turned to Google for answers.

“I Googled ‘Ovarian Mass’ — and I’m looking at pictures trying to find one that looked like what I had seen on the ultrasound,” she said.

When the provider walked into the exam room, the two women just looked at each other. And then Williams started to cry.

Her provider told Williams she couldn’t definitively say that the mass was cancerous. The large quantity of fluid in her pelvic cavity was also of concern. She asked if Williams had any pain.

“I’m in pain all the time. My left leg goes numb all the time. I do all these things — I run and lift weights,” she told the provider. “But I constantly feel like I have to stretch out my back.”

Oncologist referral

She was ultimately referred to a gynecological oncologist, Dr. Steven Elg.

“He said even though I’m a provider, he was going to treat me like any other patient. He said he wouldn’t give me more information than I needed but he wouldn’t withhold any information,” she explained.

Together, they decided that surgery was the best option.

At that time, Williams was training for another half marathon on Oct. 15.

“I knew what surgery would mean. It would keep me from being active for at least six to eight weeks and possibly longer,” she explained. “I was adamant that I would finish this race and then do the surgery.”

As she crossed the finish line of the race, the pain in her left leg was so severe she could barely walk.

“I’m just lucky I was able to finish the race,” she said.

She continued to run and lift weights right up to the day her surgery was scheduled.

“I needed that for my mental health — to do something that was normal, something really I enjoyed doing,” she said.

Surgery was scheduled for Oct. 25. While she was in recovery and still a bit groggy from the anesthesia, Elg came in to explain what was found. They called her husband back to be with her.

“Dr. Elg took my hand and told me that it was cancer, and that he was so sorry,” she said. “Ryan came back to recovery, and he was crying.”

Her surgeon was hopeful that the mass would be germ cell cancer.

“With that, we would remove the mass and the ovaries and that’s it,” Williams explained.

But Williams’ case turned out to be clear cell carcinoma — a rare and aggressive form of ovarian cancer located on the outside of the ovary.

“That’s bad because then it shares the cancer cells with every other tissue it comes in contact with,” she said. “They checked the fluid in my pelvis and that came back as suspicious, which made this even more concerning. Whatever was touching the pelvic fluid had been exposed to this aggressive subtype of cancer.”

A second surgery

The surgeon told her that once she was healed from the first surgery, she should consider a second surgery. The second surgery on November 20 involved a total hysterectomy with her right ovary and fallopian tube removed. A layer of tissue on top of the intestines was also removed.

“That tissue is kind of like a sponge. It sucks up all the fluid in the pelvis and kind of washes your intestines and lower lung — spreading the potential cancer,” she explained. There were also 21 periaortic lymph nodes — the nodes attached to the aorta — that were also removed.

Her surgeon encouraged her not to rush back to work. She could only walk on flat surfaces; stairs were a challenge, and she wasn’t allowed to lift anything over 10 pounds.

“His concern was exposure to infection,” she said. Elg was also worried she would try to push herself more than she should if she went back to work.

Elg also encouraged Williams to try chemotherapy. She wasn’t sure she wanted to start a round of chemotherapy. What was the point, she thought. The cancerous tissue had been removed and there was no indication that pelvic fluid had spread to the cancer cells.

“He told us we were crazy if we didn’t do it,” she said.

She was referred to Dr. Joshua Lukenbill with Mission Cancer and Blood. Lukenbill and his associates hold clinics at VDMC each month.

Williams said her cancer journey proved to be a blessing in at least one respect. She was able to spend more time with her daughters. One daughter, Finley, danced in The Nutcracker and Williams was able to spend the entire week of rehearsals with her.

“I was able to enjoy and do the entire week with her. I got to go to every single dress rehearsal and all three performances,” she said. “She loved it, too.”

At that time, her daughters had no idea why their mom had surgery and wasn’t at work. They didn’t understand why people were sending bouquets of flowers and gift baskets to their house or why people just seemed to pop in to check on the family.

Willams and her husband decided to tell their daughters about the cancer and her treatments as the first chemotherapy day approached.

“There were a lot of tears. Finley has become very quiet, but she’ll ask me different questions. Last night she told me I was brave,” she said. “I don’t think she’ll ever know how much that means to me, because I don’t feel very brave.”

“I do a lot of journaling and I try to stay positive and optimistic. If Finley knew how scared I really am …,” she said trailing off.

A severe reaction

Her first treatment was on January 31. She had a significant reaction to the chemo. She was premedicated with a steroid and a histamine blocker to try to dampen the reaction, but that didn’t seem to work.

“My immune system went off the rails, and decided it didn’t like what was happening,” she said. “I’m trying to be very optimistic that the second round will go better.”

And it was better.

“I had my second round of chemotherapy with Mission Cancer and Blood on February 21,” she said. “The team had contacted me earlier that week with recommendations for the premedications.  We continued with the dexamethasone and added Benadryl and Pepcid the night before and morning of treatment. In addition, the morning of treatment we also added Singular. ”

The morning of the second treatment, Williams’ mom came to the house at 5:30 a.m.

“We walked about 1.5 miles and then got the girls ready for school and we left,” she said.

The second treatment went perfectly. She was able to use ice packs on her hands and feet to help prevent the neuropathy and she slept for the duration of the treatment. 

After treatment, she was able to come home and sleep as well. 

“The following days after treatment are rough but doable,” she noted. “Friday was a tough day, but we got through it and the weather was gorgeous all weekend. With the help of my family and close friends, I was able to get out and enjoy it.”

She had her next chemotherapy session scheduled for March 13.

“Until then I am trying to rest, celebrate Finley turning 9 and prep for her upcoming dance competitions,” Williams said.

Sharing her story has been therapeutic, she said.

“If I can help someone else by sharing this, that’s the goal,” she said. “Had I not been tracking things with that app on my phone, how long would I have let this go? I was working so hard to take care of myself, and it kind of sabotaged me.

“Chemotherapy is just amazing with what it can do,” she said. “Do you feel crummy afterwards? Yes, but think what this is doing. It’s a reset — that’s how I’ve come to think of it. It’s resetting the rogue cells in my body.”

There is some collateral damage, of course, such as the loss of her long tresses and neuropathy in her hands and feet.

Williams is scheduled for six rounds of chemo, with the final treatment to be in May. Her providers are also actively looking at clinical trials that might benefit her, so she’s not certain when she’ll return to work.

She’s grateful for the outpouring of support she’s received from her family, friends, co-workers, and other cancer survivors. She’s grateful her daughters have gotten to see the outpouring.

“It shows them that there is such good in the world and that people do care. It’s a privilege of living in a small town,” she said.

To hear Jade Williams share more of her story, visit the VDMC new podcast channel. Access it directly at vdmc.podbean.com or by going to vandiestmc.org and selecting Focus on Health under the News & Events tab.

Other ways to listen are through podcast apps, like Amazon Music / Audible, iHeartRadio, Spotify, Google Podcasts and Apple Podcasts.