Among all the men, Iris Farley—a prostate cancer survivor and trans womanwill be running in Us TOO's SEA Blue Prostate Cancer Walk & Run on Sept. 26 in Lincoln Park.
Farley, a Chicago resident, is the senior director of HR at Komatsu America Industries, LLC. Outside of work she is married with a son, part of the pin-up community, enjoys yoga, reading, film and running. Farley said she ran during her high school years, and after some time off, started back up in 2017.
Farley told Windy City Times that her transition began Jan. 1, 2020, after some work with the therapist over two years. However, it was when she ran in the Disney Princess Half Marathon in February 2020 that was a memorable moment for her transition.
Having already started to experiment with some gender transition, she recalled stopping for pictures with Disney characters. She recalled a group of four women in front of her in line talking. One of the women was trans, sporting full hair and makeup and a Snow White gown. Overhearing her talking about her transition, Farley, a self-proclaimed aspiring Disney princess, said she was mesmerized and things started to crystalize for her. By March 2020, Farley was sitting down, talking to her wife about what she was feeling.
"It's a thing I was fearful of because I knew that making that acknowledgment to myself had the potential [for] some pretty major upheaval in my life," Farley said, whlie also expressing her marriage and job concerned her the most. "So I avoided it for a long time."
Farley started her transition actively in June 2020, coming out slowly to people. By January 2021, she was living fully as Iris.
In April 2015, before her transition, Farley went experienced a different challengebeing diagnosed with prostate cancer. Her doctor ran a Prostate-Specific Antigen (PSA) test in 2010 and, over the next couple of years, her levels rose. Continuing those checks with a urologist, eventually she had an inconclusive biopsy in 2012 and continued to get tested.
"Get the damn test," Farley exclaimed. "Take care of yourself. They say that a large percentage of men die with prostate cancer in their bodies. It's super slow growing and you can find out it's there. So, when I found out I had it I was like 'I'm not messing around with this thing and I'm getting it out.'"
"In many, many men, the survivor rates, if they catch it early, are incredible," said NorthShore University Health System Director of Sexual Health Jeffrey Albaugh, PhD, APRN, CUCNS. "The five-year survivor rate is 99%, which is amazing, but only if you catch it early. So, the problem is, if you have symptoms that means you probably have metastases and you're in a late prostate cancer situation, which is much, much more difficult to treat and now we have to deal with all of that. So it's so important for men to get screened…"
He went on to explain when screening is dependent on individual factors. Care is more individualized now in terms of screening and treatment because genomic information can reveal important things about how often a person should be screened. Other risk factors are also considered when talking about screening and treatment.
Albaugh has worked in the prostate-cancer field for more than 25 years and has been involved with Us TOO for 17 years, even serving on the board for three years. He is a board-certified advanced practice urology clinical nurse specialist and certified sexuality counselor with a PhD in sexual-health research and prostate-cancer research. Additionally, he runs the Sexual Health Clinic at the Jesse Brown VA Medical Center.
"Now we're trying to turn the tide back, so men understand [that] look women would never fathom not getting their mammogram and they have the same screening levels with it," Albaugh added, comparing the screening rates.
Us TOO International is a 501(c)(3) charitable/not-for-profit organization geared toward empowering men diagnosed with prostate cancer and their loved ones by providing educational resources and support services to fight against prostate cancer. Its home office is located in Des Plaines, Illinois.
Providing tools like support groups, online support services, newsletters, educational materials and events, Us TOO has the vision of a patient-centered prostate cancer model that boosts emotional and physical well-being, while its mission is to "help transform resignation into determination and fear into hope."
Us TOO's annual SEA Blue Prostate Cancer Walk & Run celebrates the lives of those who have fought prostate cancer, the lives that have been lost to the disease and those who will combat it in the future. The "SEA" in the event's name stands for support, education, advocacy and awareness.
Terri Likowski, Us TOO's program director/support group services has seen the SEA Blue event grow over its 17 years and has been a part of its development.
"The bond of the people that are out there the day of the event is so special," Likowski said. "Even for families who are coming into the event new, men who might've just been newly diagnosed, a lot of times we'll get teams that are men who are newly diagnosed and their family comes in to support them for that and it's just a great time for everyone to be together, knowing that they're not going through this on their own; that we have this huge network of support for them available."
If someone were to inquire about Us TOO's support groups, they would be in contact with Likowski. She said among the many groups, the organization offers " A Prostate Cancer Forum for Gay Men and Their Partners (Everyone from the LGBTQIA+ Community is Welcome)," which is an inclusive, call-in support group.
"We all now have to be very open about what the conversations are," said Likowski. "We've got such a variety of support groups these days and I'm really proud of the fact that we have this group that's open for the LGBTQIA community, but we also have groups that are specific to female caregivers who are in their mid-50s, but have a partner with advanced stage prostate cancer. So the world is becoming much more specific in what their needs are."
Likowski went on to say that Us TOO and its support groups recognize that everyone's needs are different depending on the scenario, but it's also important to be careful not to be too definitive and specific because it's about being able to help everyone with prostate cancer.
Farley explained that, for the last few years, she has been trying to figure out how to personally contribute to awareness and research as a survivor.
"This year it's different because what I'm finding, and I certainly can't speak for the whole trans community, but I know a lot of people who are transwomen for whom any sort of association with their male biology is painful and difficult," she said. "So I think about all of the effort that goes into creating awareness and trying to convince cisgender men to go out and get tested. I think 'wow you're facing that hurdle plus the potential hurdle of somebody who doesn't want to acknowledge that this thing is still in them and has forgotten about it completely.' It seems like it's a possibility, especially I know it's a thing where doctors have to remind people [that you] still have to get tested even though you're going and getting mammograms now. Don't forget about that prostate because it's still there and can still be an issue."
Hoping to have an opportunity to start a conversation, Farley thinks about awareness, communication and education for everyone with a prostate. She added that trans women with prostates "should be receiving that information and I don't think we always do."
"I recognize how fortunate I am and that says to me I have to take this and do something with it," said Farley of her experience. "This is one aspect of advocacy that I can see right away and it's just an intersection of things I care about. This feels like it makes a lot of sense. Not sure I'll get into other things over time because I want to be a voice in the community, but this feels like a start for me of something bigger that I can start to have a positive impact on the community in some unexpected ways. I don't think anyone sees prostate-cancer awareness as necessarily a big space for the trans community to engage in, but, hell, why not?! Especially if no one else is doing it then let's get the word out."
Farley lightheartedly said she is looking forward to "throwing people for a loop" at SEA Blue this year, sharing that in the past some people were confused when she picked up and wore her "warrior" event T-shirt because of age. This will be Farley's first time running at SEA Blue as Iris and she plans to wear a trans flag-colored running dress. She has participated in three other SEA Blue events prior to her transition.
"Here's the hard part: 'I've moved on, I don't want to think about my prostate anymore, but I still have to think about prostate health because it's super-important,'" explained Albaugh of one of the challenges within the trans community surrounding prostate cancer and getting screened. "That's a difficult thing. It's monumentally important for that community."
For more information on Us TOO, visit ustoo.org/Home.
To learn more about SEA Blue, visit ustoo.rallybound.org/sea-blue-2021/.