Spotlight on Justin Nicolay: A Jack Story Presented by AARP
A Jack's Founding Story, Part 2
September, 2013 - he was 8 months into it.
Michelle, his wife, had been diagnosed with an aggressive form of Stage IV melanoma in February. They had an infant son. Treatment options were limited and would be horrific; the odds of surviving a year were in the single digits.
Things were moving fast. Life was changing quickly. He was trying to keep up with it - with the changes to his life and the lives of his family members - but it was too much to adapt to in such a short period time.
He was struggling.
So, when he received an unsolicited email from a guy who was going through something similar to what he was going through – taking care of a wife with terminal cancer; taking care of young children - who wanted to ‘serve’ him - to clean his gutters, to fix things around his house - Justin’s response was, ‘’I live in a condo but would definitely be up for meeting you for a beer, just to talk.”
“I met Kyle in the winter of 2013, 10 months or so after Michelle was diagnosed with STAGE IV melanoma. We would meet once a month, just to talk - about life, about cancer, really about anything we were going through. It was so refreshing, so comforting - just knowing another person who was in my shoes was out there; a person who could relate to me and what I was going through.”
That’s how it started.
Months earlier, in early 2013, shortly after the birth of their son, Greyson, Michelle began to have pains that she attributed to hemorrhoids.
“We were thinking they were a result of childbirth,” Justin begins. “But after a while, we went into the doctor to have things checked out. They did a full colonoscopy and did a biopsy. They just told us to come into the office; they didn’t want to tell us over the phone. We knew it was something bad. Michelle was freaking out.
"On February 7th, 2013, we found out that she had rectal melanoma, which is very rare.
“The diagnosis of her cancer was a shock,” recalls Justin. “Literally, we were frozen, paralyzed, then we’re having those tearful calls to closest friends and family; you look on the internet, trying to get some context, some ideas of the cancer. You try to learn as much as you can about it."
Everyone can pinpoint a moment in their lives when their life is shattered. You know it. Whether you’re sitting in the doctor’s office or you get that nervous call from your wife telling you that the doctor wants to talk to you in person – she wants you to come in to get the news that they don’t want to tell you over the phone.
Michelle went to the Mayo Clinic for treatment for her stage IV diagnosis. There were few treatment options for melanoma, but she was put on a new drug that doctors said would provide a certain period of protection for ‘as long as it worked.’ Once the drug stopped working, though, the cancer would progress fast and there was nothing they would be able to do to stop it.
“The cancer appeared to disappear,” Justin recalls. “But we knew that once it came back, it would come back with a vengeance.”
Back with a vengeance
It was April 2014, 10 months since Michelle had been on the new drug and Michelle had surprised Justin with a trip to Arizona. While there, Michelle started to have serious pains in her abdomen.
“The drug had worn off, just as they had predicted,” Justin began. “The melanoma was going crazy. It was to the point that we were in the airport trying to get home and Michelle was in such pain that she was screaming and crying and doubled over. She didn’t think she could make it on the flight back home. I told her, ‘we have to get home! You don’t want to be stuck in a hospital in Arizona with Greyson back home in Minnesota. Who knows how long you’ll be in the hospital."
Justin finally convinced his wife to get on the plane and they landed in Minnesota 3 hours later and went right to the hospital. She spent several days in the hospital – he realized that it was the beginning of the end.
Dealing with it, living it
“Like everybody who cares for someone with cancer, you get the diagnosis and you’re in shock. They tell you not to go online – that’s exactly what I did. I read everything I could find on her rare form of cancer. You want to know what you’re dealing with and you read every medical paper, even though you can hardly understand them.
"You’re trying to make sense of it all. You’re in shock. You know she’s here and she’s alive. She’s okay now.
"It’s hard to connect the fact that she has a diagnosis that has a survival rate of not more than a couple years. There are tough nights. There is grief. You go to work, and you come home and your wife has breakdowns every night. You have a new baby that you’re trying to take care of."
“You have no peers to talk to who could possibly understand what you’re going through. I didn’t even know who I would reach out to. I found my mental health suffer because I was making sure that everyone else in my family was ok except for myself. I had apathy. Then, out of the blue, I get this email from my dad telling me that there is someone out there who wanted to reach out to me because he knew what I was going through.”
It was from Kyle, a guy who was working through his own issues with his wife’s terminal cancer diagnosis and his own young sons, it was a relief to Justin. It was a voice in the darkness that spoke to him. When they met for beers, just to talk, to share, their conversations were real and hit close to home, covering issues and concerns that were dear to both.
“That first time I met with Kyle, I showed up and there are two other guys sitting in the booth with him. He’s got a suit on. I’m thinking to myself, ‘who are these guys? This isn’t what I signed up for. I wasn’t here for some sort of support group. Well, the other guys soon left, and it was just me and Kyle and we just talked for a while, and something really clicked. I felt a great sense of relief after that first time I talked to him, being able to connect to someone else who understood what I was going through for the first time in this who cancer experience. It was just a relief. It could have been joy.
“It was awkward when we first met, though,” Justin confesses. “It was like a first date that everyone jokes about – what do we talk about? How do we find a common interest? It was like a joke: a guy walks into a bar looking for a guy who might be looking for him and not knowing what he looks like…”
“Then we would meet, maybe once a month, and we would talk about life,” recalls Justin. “About our situations with our loved ones’ cancer. These monthly meetings that I had with Kyle saved my life, they saved my sanity. I just needed someone to talk to, but I didn’t want to go to a support group, and I didn’t want to sit in a circle. Meeting with him and talking at a bar was what got me through those tough times.
“It might have been joy that I was feeling for the first time since Michelle’s diagnosis. It was just this connection with somebody that can understand was so cool.
“And he hadn’t even seen my picture on Tinder,” Kyle jokes. “We were nervous at first, not knowing what we’d talk about, but our conversations were incredible. We turned over stones for each other that I don’t think either of us knew were there. I asked him how I could serve him, like the Culps had served me in Virginia, and he said the best way I could serve him would be to meet monthly just to talk. So, we kept meeting.”
Says Kyle, “After six months or so of us getting together and talking, we realized that something was missing. It had just been the two of us and we knew that there were other guys who needed the same thing we had with our monthly beers. We saw the Angel Foundation and what organizations like them did for kids, but what we were looking for an Angel Foundation for ‘dudes.’ So, we threw together a website and we called it something horrible like ‘Caregivers. Leaders. Dads.’ Literally those three words, it was awful!”
Justin continues, “so that brought us up to about February of 2014, about a year from when Michelle was diagnosed, Kyle and I talked about how we could replicate what we were doing for each other, what I was sharing with him and how you were helping me, for other guys. It was so helpful to have a beer with someone and just talk through this stuff; to know that I’m not alone. We wanted to share those feelings and what we learned. We just asked, ‘how can we replicate this?’ How do we bring this to others, because we’re not the only ones who are feeling like we’re on an island? We know there’s a sea of them out there and you can’t just pick them out of a crowd.”
Once Michelle's treatment stopped working in April of 2014, her cancer progressed fast, and soon had metastasized in her brain. She was losing the ability to communicate.
Quickly, she had less and less ability to ‘participate’ in the things going around in the house. Justin was having to take on more and more around the house – things that Michelle had previously done for their family, from caring for their young son to doing the daily household tasks.
Their young son, Greyson, was less able to spend time with his mother because she couldn’t speak.
As Michelle’s cancer got worse, she couldn’t physically be there for him because her cancer was limiting her ability to speak, so there was a transition - a transition away from his mother, who was dying. To Justin, it was challenging trying to be a dad and mom. He was having to learn, quickly.
"I know I didn’t do it well, but I did enough to get by. You learn a lot - what’s important, the big rocks that you have to take care of - get the groceries, the laundry has to get done; it doesn’t have to get folded by it has to get put away.
“I wasn’t accustomed to doing some of those things that Michelle had done for him. I had to learn to do more things by myself. Giving our son, Greyson, that same affection that Michelle had always given him didn’t come naturally to me. I had to ‘learn’ how to do it, really think about the things that his mom would think about. I’d hug him, do some of those things that moms do. I really tried to make a conscious effort to have some of these little interactions that his mom would. It was a uncomfortable for me at first, but I wanted to make sure he wasn’t missing those things. It was a steep learning curve.”
He was stressed out and facing the reality of life without his wife. He was having trouble sleeping. He couldn’t eat. He was alone and dealing with everything that was going on around him. He was anxious.
Michelle passed away on July of 2014, 17 months after her diagnosis.
Michelle was the kind of person who would walk into a room and light it up. She would be the center of attention, not because she was trying to command attention but because of her energy. She was so friendly and so thoughtful. Her energy was infectious. You could feed off her energy and it was so positive.
“That lasted month or two, when Michelle was alive,” Justin begins. “It was like this purgatory for me. She was getting worse, the cancer was progressing quickly, and I knew we were reaching the end, and it just made me more anxious.
“Then she died, and it was the lowest level of hell. Having my loved one die in my arms while our two-year-old was playing outside the room where it was happening. I was suddenly in survival mode. I took a few months off work. There would be days when I was so tired and didn’t have the energy to do anything. I would put my son to bed early and then I would just go down and listen to music. It wasn’t that I didn’t want to spend time with him; it was just that I literally had no mental energy to be super engaged with him at that time. I was in survival mode.
“For the next week or two after she died, family and friends were around, but then everybody leaves and goes back to their own lives. The funeral is done, comments slow down on Facebook, sympathy cards stop, then I have this new life – I’m a single parent with a two-year-old son?
“I signed up for a grief counselor right away. I spent a lot of nights alone on the couch downstairs in the basement, reflecting on the state of shock and loneliness, maybe with a half a bottle of wine or two. I took a couple months off work. It was helpful to take some time off and to see a counselor. I told the counselor about my struggles and the loneliness I felt. They don’t have all the answers, but they do affirm that you’re not crazy feeling the way you feel. That was important to me. I was feeling like I was losing my mind. I was still a dad, a single dad, to a two-year-old son who could barely speak but was asking me where his mom was. I was trying my best.
"I was in mental survival mode. I was grieving. I was leaving my old life. That lasted for a few months. Then I decided to go back to work. I wanted to get some structure back in my life. I needed to get back to that routine I had had before."
Next: Dustin Cesarek, A Jack’s Caregiver Coalition Founding Story, Part 3. And next after that Part 4 will update you on current lives of Dustin, Justin, and Kyle.
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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, 13, and Jacob, 12. Mike has been a Jack's member since 2017.
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Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.
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