Spotlight on Dustin Cesarek: A Jack Story Presented by AARP
A Jack's Founding Story, Part 3
It seems like cancer has always been a part of his life.
When he was 11, his 25-year-old sister, April, was diagnosed with leukemia. She was living in Minnesota at the time, so his family moved from Las Vegas to Rosemount, Minnesota, to be close by and to support her as she prepared for a bone marrow transplant.
“We lived in an RV that was parked in my aunt's backyard,” Dustin recalls. “I spent most of that summer playing in the backyard or sitting in the hospital. We had a big birthday party for April at the end of July, because she was going to be in the hospital on her birthday in August. Then she got her transplant, and things went downhill quickly.”
Within a month of receiving her bone marrow transplant, April died of organ failure.
“She was diagnosed in November and died the following September,” Dustin recalls. “She didn’t even live a year with the cancer! The chemo was too much for her body to bear.”
“The move to Minnesota was meant to be temporary, but I ended up starting the 6th grade there. The loss of my sister was certainly traumatic. What I remember the most of those first couple of months after April died was swinging between periods of numbness and overwhelming sadness. I often felt out of focus, then all of a sudden, the tears would start, and I wouldn't be able to hold them back. I'm sure the teachers didn't know how to deal with me, so I'd just get sent to the counselor's office to cry it out.
"I know the fallout of my sister's death had a lasting impact on me, especially in my relationships with my family and my friends as a teenager."
Soon after April's death, Dustin's family moved back to Las Vegas, but the sadness never really went away.
Many years later, cancer would strike his life again.
In his early 20s, Dustin was living in North Carolina, working at Walgreens. He'd been working in the photo lab but had recently decided to commit to the company and enter a management career track.
He was helping to set up a new Walgreens store when he met Kim.
“What can I say? I was standing there one of those mornings when we were setting up, talking to my store manager, when this beautiful woman walks up to us. She carried herself with confidence and I'm glad my boss turned to address her, because I was immediately distracted.
"If you could ask her how we met, she'd tell you that we didn't actually meet, because I was just standing next to the person she was talking to. My response to her would be that I'm pretty sure she introduced herself to me and just doesn't remember.
"Naturally, I wanted to talk to her more, but I was young and didn't know better, so my first attempt at flirting involved asking her how old she was. 'I'm 30,' she said. 'How old are you? 24,' she said in a sarcastic sort of tone.
"I was 24."
“Kim was totally out of my league; I knew that. To get her to go out with me, I kind of tricked her. She was from Pittsburgh and my roommate was too, so I told her that we were going out with a group of people to watch the Sunday night Steelers game. I said it was a ‘group’ thing. I might have even guilted her a little bit, saying it was also for my birthday, which was the next day.
“For whatever reason, she decided to go. When we went out, she brought a friend, of course, with an emergency escape planned out in case of disaster. Thankfully, I made a good enough impression, because something just 'clicked' from there between us.
“Kim knew what she wanted. She was very strong-willed, and she had goals, unlike me at the time. I think that was something I was looking for.”
They started dating in the November of 2009. In October, 2011, their daughter, Reagan, was born.
“When Reagan was born, we saw how expensive daycare would be, so in early 2012, I just kind of made the decision to quit my job and become a stay-at-home dad and take care of Reagan while Kim went back to work as a pharmacist. I was still trying to figure out what I wanted to do with my life and Kim was unconditionally supportive.”
Then cancer struck!
“We were on a trip for Kim’s birthday in June of 2012. We had rented a house on the Outer Banks in North Carolina. Her sister was with us as were some friends. While on the trip, Kim was holding Reagan, who was an infant and was bouncing all around on her. She hit a spot on Kim’s sternum that really hurt. It was a sharp pain. Kim described it as something that took her breath away. We thought initially that it was probably a pulled tendon or something like that from breastfeeding. That’s what we thought, but we also thought that she should have her doctor check it out.”
When they returned home, Kim went into the doctor, who initially agreed that it was most likely just inflammation due to her breastfeeding. Thankfully, as Kim was walking out the door of the clinic, her primary care physician stopped her and decided that a mammogram would be a good idea, just to get a baseline of what was going on at the time.
Kim still didn't think she had anything to worry about.
“They found a lump on her breast, and we met with a surgeon, thinking it would be a ‘quick lumpectomy surgery.’ But they told us they wanted to do more biopsies, because they had found more ‘spots.’ After more tests, we waited several days.
“Doctors finally called Kim at work and told her that she had to meet with the oncologist.
“I remember: he was standing up in his office when we went in. He said, ‘you know, Kim, you have metastatic breast cancer. I can’t cure the disease, but I can promise you that we’ll do whatever I can to maintain your quality of life for as long as possible.'
“That’s all I remember from the conversation."
Kim was diagnosed with MBC on July 16, 2012.
“He just gave us this simple message: ‘yes, you’re going to die from this, but we’re going to do everything possible to keep you alive as long as we can and with a good quality of life.’
“I think we left the oncologist kind of hopeful. We still went home and Googled MBC and found that you have a 20% change of living five years… then we were depressed.”
“Kim and I talked it over so many times since then. We really felt that her doctor’s message to us that day really set us up to be so hopeful and positive. He didn’t talk about prognosis. He didn’t talk about data with MBC or chances or likelihood of something happening. He didn’t have that dark perspective from the beginning. He was real and he was honest. It helped us.
“We knew we had to stay positive. We didn’t have a choice. The fact was we had an 8-month-old daughter, and we knew she needed her mother. That’s when we decided to get married - three months after Kim was diagnosed.
“Those first few months after the diagnosis were like a whirlwind of positive things – we had a wedding to plan and a baby to focus on. We had so much to look forward to. That probably helped us deal with the news.”
Dustin and Kim were married in September 2012.
Kim started hormone therapy after her diagnosis of MBC. Within 6 months, her tumors had shrunk, and she was almost NED (No Evidence of Disease). Things were looking good, but in spring 2013, a PET scan showed that her tumors had grown substantially.
The treatment was no longer working.
“We decided that the stress of Kim working and going through treatment was too much, so she went on long-term disability.”
In the spring 0f 2014, after a year of marriage, they decided to move to Minnesota to be closer to family, where Dustin's family lived.
“Over those first couple of years, where we had to just kind of figure out how to live this new life; we definitely had grief, because our lives had collapsed. We had just had Reagan and had been talking about having a second child, then Kim was diagnosed with cancer.
"Our entire lives changed so quickly. We had just been talking about growing our family, and now we’re in survival mode, and I don’t know how long Kim’s going to live. My mindset was that I just had to be there for her, no matter what.
“Kim would say, ‘I don’t know how long I’m going to live. I was like, ‘oh, my God, how am I going to continue to live when she’s gone? She took a short-term view, and I was looking at my life in longer terms, thinking about how it would be after she was gone.
“The whole thing put us on different paths from each other. It created quite a bit of stress in our relationship for the first 3 or 4 years after her diagnosis.
“We had to figure it out and eventually we did.”
“I wasn’t working during those first years of Kim’s cancer,” Dustin recalls. “I had left my career at Walgreens to stay home with Reagan after she was born. Thankfully, I didn't have to go back to work right away after Kim's diagnosis, because she had insurance in place to maintain our income.
"When I think back, what I mostly remember about that time was taking Kim to all her appointments and trying to learn as much about her cancer and her treatments and her medication as I could. I wanted to support her 100% in every way I could. That was my full-time job.
“In the beginning, it was just the three of us – Kim, Reagan and me. When we moved to Minnesota, Kim kind of moved out of our 'bubble' and started to go to support groups. She started to meet other people who were also living with cancer and began going on lunch dates or doing fun activities with these new friends of hers. And I was just at home with our two-year-old while she was out having fun. That’s when I said, ‘maybe I need to get out there, too.’
“I started thinking that I needed to take care of myself, and I was trying to figure out how.”
“There was one evening when I just decided I needed to find a support group. I got on the internet and searched and searched for support groups for caregivers and didn’t find anything. I finally went to meetup.com and found this group… kind’a cheesy, something like, ‘Dads, husbands, and caregivers,’ or something like that. That was in the spring, summer of 2014.
"We started meeting up in the back room of Common Roots Café in Minneapolis. We would just get together, have a beer or coffee and talk. We probably met 3 or 4 times.
“I didn’t know Justin that well, but his wife, Michelle, had just passed away a couple months after we had started meeting. I remember thinking that his son, Grayson, was just about the same age as Reagan and he had just lost his wife and that’s what I was anticipating was going to happen to my family. I found out about the loss at the Commons Roots during one of those first meetings and remember thinking that that was going to be me one day – I was going to be in his shoes. I said to myself, 'I gotta' keep in touch with him and find out how he deals with this.'
“I don’t remember all the conversations we had. We would just share our stories. Talk about some of our challenges. Yea, we still might have had our masculine guard up so a lot of times we really didn’t know how to handle our emotions when things came up. It was easy to just start talking about our spouses or our kids, but I do remember that Kyle always made a point to bring the conversation back to how we, the guys at the table, were doing.
“To me, I now had a community, just like Kim. There were these other guys who were people I could rely on and talk to about ‘whatever.’ For me, it was so refreshing because I had already been a caregiver for two years and I had literally talked to nobody about anything during that entire time.
“I was just grateful to have those people around.
“After a while of meeting and talking, we each noticed that our stresses were becoming a little more manageable. Like having this outlet was a pressure release valve where we could drop a little bit of the burden we were carrying with each other. We all decided we were on to something and thought, ‘let’s grow this and make it into a ‘thing.’”
Recalls Kyle, “We posted our contact information on a site called meetup.com, where people post things about meeting up with other people who have common interests. If you are into karate, let’s get together and talk about karate. We posted that we are guy caregivers, and we want to meet at the Common Roots coffee shop and talk about caregiving."
Adds Justin: "Only one other person showed up to that first meeting – it was Dustin Cesarek. He was dealing with his wife, Kim’s, metastatic breast cancer, and he actually needed some stuff done around his house. I remember crawling around in his crawl space, total strangers. We realized after that that we probably shouldn’t be messing around in people’s houses.”
In November 2014, the group was named the Caregiving Corps and was incorporated in the State of Minnesota, and they applied with the IRS for 501c3 status.
Next: Jack's Caregiver Coalition: A Jack's Founding Story, Part 4.
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By: Mike McGarry
Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 16, and Jacob, 14. Mike has been a Jack's member since 2017.
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