If there’s one thing Annamarya Scaccia knows about, it’s strength. Whether it’s the strength to leg-press over 500 pounds, the strength to thrive through a rare form of kidney cancer, the strength of knowing it’s OK to NOT be OK all the time, or the strength to help others take control of their health and wellness, she’s got it covered. 

The mother, writer, kidney health advocate, and competitive bodybuilder has used the adversity that life has thrown at her as fuel to help herself and others realize their full potential through her work with her adaptive health education organization Stillwell Fitness. 

Responsum Health had the pleasure of speaking with Annamarya earlier this year, and we’re honored to be able to tell her inspiring story. 

“A Rare Form of An Uncommon Disease” 

Like many others, Annamarya’s kidney story begins with an incidental medical visit, which led to a life-changing diagnosis. In June of 2020, her doctor was concerned about her kidney levels. After lowering her protein and taking other lifestyle steps, her creatinine and butene levels were still elevated, along with her white blood cell count.  

A subsequent ultrasound and MRI revealed a cancerous mass on her kidney: “It was a very quick journey,” she says. “It went from ultrasound to MRI to cancer diagnosis in a matter of three weeks.” The exact type of cancer Annamarya had was called chromophobe renal cell carcinoma, which she says is an exceedingly rare type. “It’s a rare form of an uncommon disease.” She attributes the identification of the disease to the expertise of her doctor, who, after the surgery, said that she probably had cancer for two to three years before her treatment.  

Similar Symptoms Lead to Delay in Care

Annamarya had also battled polycystic ovary syndrome (PCOS) for years up to this point. One of the factors complicating her cancer diagnosis was that her cancer symptoms mirrored those of her PCOS (back pain, fatigue, edema, loss of appetite, etc.). These symptoms were going on for a year, but she chalked them up to a combination of stress from personal issues, family history, and her other condition.  

Although her white blood cell count had always been high, her previous doctors had “explained that away,” suggesting that she was probably just “sick” that day. The symptoms have subsided since she had kidney surgery. “I knew in my gut that something was wrong, but then I was just like ‘Ok well, maybe I was just sick.’” Annamarya partially credits her feeling that something was amiss to her fitness quest and the self-awareness it engendered: “It sounds weird, but getting into shape the way I did; not just going to the gym, but actually focusing on my nutrition, brought it to the forefront.” 

Fighting Back: Surgery and Recovery

As surgery is the only approved clinical treatment for chromophobe renal cell carcinoma, Annamarya had her kidney removed following her diagnosis. She recounts the difficult recovery period that followed: “It was really tough for the first three months. I’d say that it was physically tough and emotionally tough.” She describes pain, bloating, and other symptoms she still sometimes feels to this day. Following her surgery, she was placed on active surveillance, where she’ll stay for the next four years under the care of her clinical team. Her most recent scans reveal that she is still cancer-free. 

The One-Kidney Bodybuilder: Blending Fitness with Empowerment and Advocacy 

Although she must be mindful of symptoms and health issues that were not previously a factor now that she only has one kidney, Annamarya continues to persevere against the long-term effects of her diagnosis. She has even started calling herself the “One-Kidney Bodybuilder” to quickly sum up her incredible journey and to inspire others.  

Despite her incredible strides forward, she still experiences mental health issues associated with her condition: “People think that just because I got the surgery and the kidney is gone that I’m completely OK, but I’m not. I have to watch myself in a way I’ve never had to watch myself before.” She talks about a recent health scare, which was made more serious by her kidney issues, that forced her to second-guess herself: “It just makes me question the things I’m doing and whether or not I should try to live the life I was living, even if it’s adaptive.”  

After months of training as a bodybuilder, she had her first event in November, just a few weeks after getting the good news from her doctor about her scans.

Managing Her Kidney Health Every Day

Annamarya no longer uses salt and has switched her protein to more vegan-based sources. “One of the meals I prep for the week might have meat in it,” she says. She also maintains regular appointments with her nephrologist to check her estimated glomerular filtration rate (eGFR). She also ended up lowering her protein by ten percent on advice from her doctor. “I don’t really have to watch out for potassium levels, but I’m still not eating a ton of bananas.”

Annamarya also admits that the first few months of her recovery impacted her training and fitness regimen, but how they’ve generally subsided. “I still can go hard, but I can’t go as long because I’ll start feeling soreness in my left side.” 

Using Her Experience to Help Others 

Since her treatment, Annamarya has launched Stillwell Fitness, an adaptive health education business that teaches members about proper nutrition, diet, and fitness. She says she started the company to serve an unmet need for education and support of adaptive athletes (athletes who may need to modfity their training to account for chronic health issues) in the fitness community: “A lot of times when I’d ask a coach for modification advice, they’d just say things like ‘squat it out.’”

She wants to help others like her who don’t necessarily fit into a box, but still need help on adaptive kidney-related fitness: “There’s nothing out there for people like me; there’s no one to tell you ‘If you’re an athlete and you have decreased kidney function, this is what you need to do.’”  

Stillwell takes a holistic approach to each patient’s nutrition and fitness, and meets them where they are in their wellness journey. The clients she’s helped so far are deeply grateful for her insights. She plans to expand Stillwell’s service to full-on guidance and support for those who are experiencing emotional and logistical barriers to proper wellness.  

Parting Wisdom  

While she continues to process her experiences in her own way, Annamarya reaches out for support whenever she feels like it’s safe and helpful to do so. She’s identified her safe spaces and sources, and continues to keep moving forward…because she doesn’t know any other way. She has some parting advice for those who may find themselves in a similar situation: “Have a plan, feel your feelings, and figure out the things that are important to you that will change with this illness, and figure out a way to do them. It’s going to be bumpy.” She ends by advising people to choose their support system wisely and by doing their own research. 

Annamarya’s journey reminds us of what we’re truly capable of when we face adversity and that that which doesn’t kill us makes us stronger…as if she wasn’t strong enough. Follow Stillwell Fitness on Instagram at @stillwellfitness. 

*Article featured image by Tony Fournet