Phyllis Suiter’s Story
“Cancer thinks it’s in charge of you, but you can’t let it be.”
“It’s by the grace of God that I was diagnosed. I had no idea, none whatsoever. I was not sick.”
Phyllis Suiter, elegantly composed, has a rich storytelling voice, likely seasoned by the thousands of books she has read to her seven grandchildren and 10 great-grandchildren in their lifetimes. It’s with this captivating voice that she shares her journey through her cancer diagnosis and treatment.
It began with a swollen ankle in February 2015. Phyllis dismissed it, thinking she must have stepped off the curb funny without noticing. After a few weeks, her instinct told her to get it checked out. On a Wednesday, she went to Springfield Clinic Prompt Care. The staff there x-rayed it, but didn’t find anything abnormal, so they suggested she call her regular doctor if it became inflamed.
Phyllis called Springfield Clinic Family Medicine’s Jennifer Western, MD, on the following Monday. The ankle had become inflamed, and Dr. Western told her it looked like an infection. But Phyllis’s bloodwork was “bizarre,” so Dr. Western referred her to Springfield Clinic rheumatologist Jason Guthrie, MD. Dr. Guthrie agreed Phyllis’s bloodwork was “a little scary,” but Phyllis still didn’t feel like it was something serious. She still didn’t feel sick.
Dr. Guthrie didn’t think it was gout, but pulled crystals anyway. At about 8 p.m. that night, he called Phyllis. “I’ve just talked with Dr. Western, and we feel you need to come in tomorrow morning and have your bloodwork done again. She just wants you to stay until all your results come in.” Phyllis did, and then Dr. Western referred her to a hematologist, Springfield Clinic’s Namita Vinayek, MD. Dr. Vinayek recommended a bone marrow biopsy.
Around 6 p.m. on a Tuesday, just two weeks after Phyllis went into Prompt Care for her swollen ankle, Dr. Vinayek called to tell her she had leukemia.
Phyllis was referred to Tomasz Srokowski, MD, “who, to me, is beyond a saint of the world,” she says. The diagnosis still hadn’t really sunk in. “I still didn’t get totally panicked. It was just like, ‘what?’”
Phyllis’s daughter, Kim, and husband, Bill Sr., went in with her on Thursday of that week to meet Dr. Srokowski. “What you have is very bad,” he said. “What you have is acute myeloid leukemia, and it’s very aggressive.” Phyllis asked him, “Well, what if I hadn’t come in to see you today?” He replied, “You’d probably had about five weeks left to live.”
“It’s hard to explain the shock that you feel and the kind of devastation immediately. Like you can’t absorb it. But then I looked at him, and I said, ‘You know what? I’m going to beat this thing. I’m going to do everything it takes to beat it. To win.’ And he said, ‘You know, we will be here 100% for you.’ I knew right then that I was going to be fine. I was going to walk away from this thing and going to be fine.”
“It was the hardest day of our lives,” Bill Sr. says. “But of course she started coming around, talking about ‘Not me, it’s not going to take me,’ and that cheered our daughter and I up. She swore, ‘I’m not going to let this beat me. I’m going to win.’ That’s the typical person she is.”
Dr. Srokowski then laid out two treatment options. Plan A was aggressive: heavy-duty chemo that would put her in the hospital for 30 days. This would have a very high chance of putting the leukemia in remission. Plan B was less aggressive: a chemo treatment that would control the leukemia, but never put it into remission.
However, Dr. Srokowski said he wanted Phyllis to think about it while she completed genetic testing. “Which saved my life,” she says. “Believe me. I firmly believe in genetic studies. What’s another week in five weeks? You have everything to gain by making sure you are doing the right thing, and that’s what Dr. Srokowski did.”
Bill Sr. wanted it gone. He wanted Plan A so that it would go into remission. But Dr. Srokowski called Phyllis back after he got her genetic makeup. “Phyllis, you can’t do it. You can’t do the heavy-duty chemo. You’ll never survive it. It’d be really, really risky, but you think about it, and you let me know what you want to do.”
“Why would I go in there and probably die trying to get rid of it?” she says. “I went in and told Dr. Srokowski I wanted to do Plan B. And he said, ‘Okay, let’s get going.’”
Phyllis celebrates her 80th birthday in 2018, and she hopes to do so by hanging out and drinking wine with her husband and family. She has four children, Bill Suiter Jr., Deborah Berry, Kimberly Suiter and David Suiter, along with seven grandchildren and 10 great-grandchildren.
Phyllis and Bill started this big family in Monticello, Ind., where they grew up playing in the courthouse yard together with their grandmothers watching them. “We started going together when we were juniors in high school, and we’ve been together ever since.” From childhood friends to high school sweethearts, Bill was even captain of the football team and Phyllis was homecoming queen when they were seniors. Bill crowned her, “and he’s had the crown on my head ever since,” Phyllis smiles.
Now, Phyllis and Bill Sr. own Antonio’s Pizza in Springfield. Bill and David both work for their parents, and plan to take over for them once Bill and Phyllis are gone. “Being in business for yourself is not easy,” Phyllis says. “But opening Antonio’s has been a fun trip through life.”
Phyllis says of she and Bill Sr., “We really grew up together and went through a lot of things in our years together. I would not have been able to survive what I survived for almost three years now without the love or support of my family.” Having just celebrated their 60th anniversary, Phyllis has some key advice for surviving 60 years of marriage.
“There were times when we didn’t like each other very much. When you have those tough times or those battles in a relationship, you don’t say ‘I quit. I’m done with this.’ You just get through the next day, two days or even a month or two. And then, all of the sudden, things are better. And you find each other again.”
Bill Sr. agrees, and says that even with 60 years under their belts, they still have to work at their marriage. “You just gotta love each other. We didn’t always agree, but you just step back, you think about it, and if you want to continue on, then you come back the next day and come to an agreement. You just have to keep working at it.”
Bill Sr. has been by Phyllis’s side since the day of her diagnosis through three years of treatment. “He goes there with me every time I go. He has never missed going to treatment with me. I told him I’m a grown-up girl, I can do this myself. He said, ‘You don’t need to do this by yourself.’”
After opting for Plan B, Phyllis went immediately back to the infusion room to begin treatment. She started by going seven days a month and is now down to five days a month. “March 9, 2015 was my first treatment,” Phyllis says. “From that point, all my counts got really wacky, and I had to start blood transfusions in April. In May, Dr. Srokowski did another bone marrow biopsy. When I started, my count was 60% leukemia and moving rapidly. In May, it was down to 7%.”
Dr. Srokowski called Phyllis to tell her the good news, just as excited as she was. “She responded very well to the milder treatment,” Dr. Srokowski says. They continued with the treatment, and Phyllis’s counts got better and better. In November of that year, Dr. Srokowski cut the treatment back to five days a month. He also set up a consultation for Phyllis with the Siteman Cancer Center in St. Louis. There, they did another bone marrow biopsy.
“When it came back, I had no leukemia in my bone marrow and no leukemia in my genetic makeup. It’s gone. I am in remission. Which never was supposed to happen.” Bill says that while getting the diagnosis was the hardest day of their lives, receiving this news was the happiest.
“The first thing she did was call everybody and make sure everybody knew it. She just wanted everybody to know, ‘I told you so,’” Bill says. Phyllis says that when she got the phone call saying she was in remission she told Dr. Srokowski, “Well, I could have told you that.”
While being in remission is nothing but good news, Phyllis will be spending five days a month in the infusion room for the foreseeable future. “Once a month, for three years now I’ve been up in the infusion room visiting my second family. That’s how I feel about everybody there.”
“If you have to be diagnosed with cancer, any form of cancer, all I can tell you is the best place in the world to be is Springfield Clinic’s Oncology Department,” Phyllis says. “I think everybody in the Oncology Department treats everybody like they are a person and not a patient number. They always take time to talk to you, to explain things to you. I can’t think of a better place to be and better people to surround you as you’re going through this journey that you’re traveling.”
Now that Phyllis is in remission, she lives her life completely normally, laughing as she says she has even more energy than her husband does. “She receives her medicine and then goes back home and lives her normal life,” Dr. Srokowski says. “That makes me feel wonderful. This is a disease that a few decades ago would be deadly. She lives her normal life.”
A memorable moment for Phyllis was last Thanksgiving. Each year, she and Bill go down to Austin, Texas, to visit their daughter, Kim, for the holiday. Kim had signed up for a Turkey Trot, and asked if her mom wanted to do it with her. Phyllis said, “You know what, I need a new goal in my life. Sign me up, I’ll walk it.” So Phyllis started walking every day, working up to the 5K distance. However, when she and Kim went to check in, they realized the Turkey Trot was five miles, not five kilometers (which is a little over three miles).
“We looked at each other and said, we can do it,” Phyllis remembers. “And you know what? We walked five miles in one hour, 31 minutes and 57 seconds. That was about 18 minutes a mile. And I felt fabulous when I got done. I thought, thank you, God. To accomplish that as a leukemia survivor and an 80-year-old woman was just beyond my comprehension. Cancer has actually given me strength that I didn’t know I had.
“I had never and I will not to this day use the words, ‘I’m sick’ because I never felt it. I felt like if I said that, I’d start to give into it. And I did not want to give into it. I was not going to give into it.” That’s also Phyllis’s advice for anyone diagnosed with cancer today.
“I know how devastated and scared to death they would be,” she says. “All I can say is, you can’t give up. You have to face it. You can’t let it take charge of you. You have to take charge of cancer. Fight it with every fiber of your body. Fight it and do what it takes to fight it.”
Bill Sr. says his best advice is to keep living life as normally as possible. “Don’t change too many of your habits, just go right on living. You gotta keep going. In some cases that’s hard, but don’t change your lifestyle. Keep going, keep doing the things you love to do.”
Phyllis says that things she used to think were important are not important anymore. She still likes good food, good wine or a new outfit. But those things are not as important to her as being able to wake up every morning, be with her husband and family, and enjoy fresh air, birds singing, and all the things that, “you’re so busy in life you just don’t recognize that are around you. I just enjoy everything around me now. All the small things,” she says.
Bill Sr. describes her as a loving, sweet, unselfish person. “She is as sweet as she can be. She pretty much treats everybody kind of like she did her children. She loved them to death and still does.” Because of her upbeat personality, Bill Sr. says she has very few down days. “Last night, it finally got to her a little bit, and she got a little grumpy. I was thinking, boy, if I were going through that, I’d probably be the world’s biggest grump. I couldn’t take it like she does.”
Phyllis may spend five days a month in Springfield Clinic’s infusion room for a while, possibly the rest of her life. “We’ve opted to stay on treatment, so I will probably be on it until it doesn’t work anymore.” She’s not worried about having to spend all that time with “her second family,” though.
“They treat you like you’re the only person they’re taking care of at that very moment. And I see them, they’re that way with everybody up there. Springfield Clinic Oncology is a gift to this city, this community, to any patient that faces cancer or whatever they’re up there for. I can’t think of anywhere else in this whole world I would rather be through this or have the people surrounding me than the staff in the Springfield Clinic Oncology Department.”
As Phyllis’s constant companion to all of her treatments, Bill also has nothing but good things to say about Springfield Clinic and the infusion room. “It’s probably one of the friendliest places I’ve ever been, with pleasant people who make you feel welcome. We have a good time while we’re here—I mean, we’re not here to have a good time, but we do.”
Phyllis even jokes about how much she trusts her doctor, Dr. Srokowski. “If he told me to go jump in a lake right now, I would go out there and do it,” she laughs. “I just trust him with every fiber of my body.”
Although Phyllis has been treating her cancer for three years, and will continue to do so, she isn’t ready to let cancer take charge of her and her life. “It’s a very difficult and scary journey, but it’s also a journey I knew in the end I was going to come out winning. I know it’s not going to last forever, because nothing last forever. I have just always known I was going to be okay because I was in good hands. I hope cancer isn’t the thing that takes me down. It may very well—but it hasn’t gotten me yet.”