Last time I saw Bob, he was sharpening an axe and practicing trick throws at an axe-throwing event hosted by Jack’s.
Here I was, several years later, in the Dunn Brothers across town in Eagan, just waiting and wondering if there was more to Bob than what I'd seen of him that day.
Then he stepped into the place, and the entire table of people next to me yelled: “Bob!”
I did too. Why wouldn’t I?
I wondered: is this an Eagan thing or does Bob just command this type of excitement wherever he goes?
Bob Hinkle: dodging darkness, finding light in an enduring love.
He met her at the Renaissance Fair in 2002. She was working in a shop, and he was hanging out with some friends, waiting for one of them to buy something, and talking to everyone who would listen. He was getting impatient, though, and just as he was ready to throw his friend out of the shop, she walked in.
“I was awestruck,” Bob says. “Wow!”
She was Jan, the manager of the shop, and, of course, he talked to her, too. They talked for a short time and eventually exchanged numbers, Bob telling her he’d call her.
Then he pulled a ‘guy’ thing
The next week, Bob went on the fishing trip to Canada for a week, and when he came home, he had to process the fish and clean the boat.
“There’s a gap in time when I said I’d call,” says Bob.
In the meantime, Jan had been waiting for him to call - a call Bob had promised to make sooner than he eventually did.
“By the time I got back,” Bob says, “I had an email waiting from Jan. Wow! I explained the situation and she believed me, she trusted I was telling the truth. Then, on our first date, I had her over and cooked her a big roast and we watched ‘We Were Soldiers,’ with Mel Gibson. We both felt very comfortable that night.
They've been together since.
“We’re Renaissance Fair people,” Bob says. “The year after we met, I got a job at the shop Jan managed in the Renaissance Fair and have continued working in that shop or others at the Fair since then. We dress up and travel around to other fairs, if we can. We love it.’
“It was in 2009 at the Renaissance Fair where she initially noticed something was wrong,” Bob says. “She was wearing her bodice, like she does every year. It’s a piece that women wear around the middle. Something was bothering her by her right armpit and hurting. It had never done that before.
“She says her bodice saved her life.”
Jan went to the doctor’s office and was told that it was a single lump of cancer in her breast. Doctors gave her several options: a mastectomy; a double mastectomy; or surgery to remove the lump, followed by radiation. Since it was a single lump, she chose to have the lump removed and completed 28 rounds of radiation on her breast.
“They told us that it was the best kind of breast cancer to get, because it has the highest cure rate.
“From 2009 to 2015, cancer was really not part of our lives,” Bob continues. “The only thing we did related to cancer during that time was go in every 6 months to have her cancer markers checked.”
After 5 years of treatment, Jan was declared cancer free.
In December 2015, the Hinkles were told that Jan’s breast cancer marker had risen and that her cancer was metastatic. A biopsy indicated that her cancer was primarily in her liver and that it was now a different type of cancer.
“Once you’re metastatic, your cancer is no longer curable. It’s treatable, which means that they can treat the cancer in order to give you a longer life and improve the quality of life, but there’s no cure.
“The breast cancer cell had gone to another organ. That is automatic stage 4 cancer. In her case, the cancer had gone into her liver.
“Hearing that she was metastatic was devastating,” Bob says. “Of course, the first thing she does is get online. Jan was reading all kinds of things about how many years you live, survival rates, this and that and the other, and it was scaring the hell out of her.
“I said: you’re looking at this the wrong way. You’re a fighter. She’s always been a fighter. I said, ‘please, don’t look at this stuff. It’s not helping you.’ I jokingly told her that she was banned from looking at that kind of information."
After her metastatic diagnosis, Jan had a central port put into her chest so that the chemotherapy could be administered directly through the port, rather than having a new needle inserted every time she went to do chemo.
“The first drug they put her on was Taxotere – that was a real nightmare," says Bob. "Nasty! All she could do is get up, get to the bathroom, get something to eat. I’d make something to eat and ask her, ‘Honey, are you in the mood for any food?’ and make whatever she wanted. Then she’d take one bite of it and go, ‘ah, no!’ Everything tasted salty to her. The funny thing is that the only thing she could eat was Ramen, and that is super salty.
“I felt helpless to help her,” Bob continues. “She was feeling horrible and nothing could be done to make her feel better. It was terrible to watch. Her hair fell out and she felt horrible. After 4 months of this hell, tests showed that all the tumors had gone 'dark,' or inactive.”
In 2016, Jan’s tumors became inactive for 6 months. Later in the year, however, her cancer became active again and she was put on a different drug than her previous one. This drug also made her hair fall out, but it didn’t have the same harsh side effects on her as the previous drug had.
“She wasn’t knocked down so hard,” Bob says. “She decided to go back to work. She said if she stopped working, she’d be dead. So, every night, she’d work all day and come home, dead tired.
“I can’t imagine how she kept going on with that fatigue. She’s on a different drug now. It’s her 5th chemo drug. The drug she’s on now seems to be working,” Bob says.
“We’re pretty lucky now from the standpoint that Jan is still independent and self-sufficient. The chemo gives her neuropathy in her hands and feet, so if we’re going to make something for dinner or something, she might be like, ‘ah, honey, do you think you can open this bottle or stir this pan?'
“Overall, we’re feeling good about how she is doing but know that it can always change.”
In the middle of it all, everything came crashing down on Bob.
In 2012, several years into Jan’s treatment, “an accumulation of life” caught up with Bob, and he checked himself into Hazeldene for chemical dependency. “Alcohol got the best of me,” Bob says. “It was the best thing I did to get help – I haven’t had a desire for alcohol since I got out.”
Even though he was able to exercise some demons, others came at him with a vengeance.
“I was diagnosed with PTSD on top of depression and severe anxiety, as well as something called anhedonia, which is the inability to feel pleasure, and I also had agoraphobia, which is a fear of crowds.
“I am unable to feel happy. It’s kind of foreign to me now. Everything crashed for me in 2012 – in my head. I can laugh in the moment, share jokes when I’m around the Jack’s guys and other close friends, and especially Jan. We’re all cracking jokes left and right, and in the moment it’s funny, but when I remember it later on, I remember the event but not the emotions.”
“Panic attacks are part of my life now,” Bob says. “There are times I just space out and I’m not aware of time passing. It could be 5 minutes, or it could be an hour, but for me it’s the same thing.
“There are times when everything, including cancer, just becomes overwhelming,” Bob continues. “It’s as if my subconscious just says, ‘OK, we’re shutting you off for a little bit now.’
“A lot of my worry is about Jan’s cancer. It’s not the fear of my loss if something happens to her; it’s the fear that I will never be able to make those memories with Jan. We’ll never get that chance.
“She’s said to me a couple of times,” Bob continues, “if something happens to her, she thinks constantly that I’ll find someone else. That’s not even in my head. I tell her that’s not even on my horizon.
“My answer to her is that I don’t want anyone else, ‘cause I could never find what I have with her. She’s one in a million - in a billion.
“She says it, I suppose, because she’s in a place of fear, too. We don’t know how long it’s going to be until something goes wrong. We just don’t know.”
To combat his demons, Bob had to change.
He had to gain skills to deal with his daily and hourly struggles.
He had to find a strength within but also a support system of people and resources outside of himself.
He had to change and find his place in this new reality of cancer caregiving and severe emotional struggles.
“Jan’s inspiring – to me and so many people. Seeing her work through her own troubles with cancer has helped me, too,” Bob says. “When friends get diagnosed, she makes a goodie bag for them and takes it over to them and tells them what they might expect with their cancer diagnosis.
“When I was at my darkest place, feeling suicidal, from 2012 to 2016, and couldn’t see a way out, I made a promise to her: I told her that until I find my own reason to stay, my reason will be to be here with you, to help you. ‘I promise you that I’ll stay for that,’ I told her. It was a promise and a promise is huge with me. My word is the only thing that has kept me sane.
“Early on in her diagnosis, I was like, ‘hey, I need some attention, too. I need my cookie.’ I’m going through all this crap and taking care of her and I finally realized that I needed a release, too.
“My emotional maturity came through a lot of work. Finding ways to release all that stress and anxiety was how I did it,” Bob says.
“I started seeing a therapist to talk things through. I also go to the gym and work out 5 days a week. I get a lot of ‘release’ of stress and anxiety when I work out. When I go to the gym, I try to leave all the ‘crap’ at the door, because its ‘me’ time and I’m able to let a lot of that ‘stuff’ out. To work it out.
Bob: Meet Jack’s. Jack’s: Bob.
“When Jan became metastatic, Minnesota Oncology gave me a Jack’s brochure and I called the number and had a brief call with Kyle. I left telling him that I’d call again – I never did. At that point, my social anxiety was so bad that I wouldn’t even go to our local Cub by myself. Then, a year later, I ran into Dustin Cesarek at a metastatic breast conference and we talked for a little bit. Again, I didn’t follow up.
“A little bit after that, in 2018, I think, I went to a Caregiver Klatch meeting in Minneapolis. The Klatch has been a real foundational piece of my life since then.
Klatches are coed discussion groups, sponsored by Jack’s, Minnesota Oncology, and Virginia Piper Cancer Institute, that are intended to teach caregivers how to thrive in their roles as cancer caregivers.
The Klatch is a welcoming environment that provides the backdrop for skilled peer facilitators to guide caregivers through a structured dialogue around caregiver issues, decided upon by the group. A think tank for like-situated individuals.
“Klatch meetings are important because you’re not escaping the topic but you’re getting there with people who are on a similar journey. Some of them are further down the path and might have answers to questions that you have, things that worked for them. Some of them are just beginning the cancer journey and maybe you can help them with what you’ve learned on your journey.
“For the time I’m in the Klatch, if I can help someone, it gives me a sense a purpose,” Bob continues. “I’m able to pass on what I know about cancer, what I learned. That means a lot to me – to help people if I can.”
The Jack’s Ideal.
“Jack’s ideal, their goal, is to help lift you back up. You’re in this ocean of crap, and they say, ‘hey, we got this boat.’ We’re all in the ocean in this boat, but now we’re dry. It’s been so calming, so peaceful to understand that – that there are others in my place; that there are others in the boat with me.
“Some guys at Klatch, when I ask a question, they answer it, and it’s right on. Bingo! That’s what I was looking for – just knowing that there are others who are going on the same journey as you. To know that I’m not alone.
“As a guy, I don’t like to ask for help. A lot of these guys don’t either. But I hear about how they reached out and how it helped. It helps me.
Learning things about himself and others and ways to deal with his social anxieties.
“I’ve learned a lot and I’ve mellowed,” he says. “I’m not as judgmental as I use to be - of others, of things. The guy driving fast behind me in the BMW trying to pass – my old self would have blocked him and not let him in pass me and thought he’s an asshole. Now, I let him pass. He’s a human being. I don’t know what he’s going through. Maybe his wife just went into labor. Maybe his kid just had an accident. Maybe he's just an asshole.
"It's not my place to judge.
“My life has gotten a lot easier without judging,” Bob says. “I used to worry about what other people think of me. What other people think of me is none of my business. I’m going to be me and if someone doesn’t like it, please tell me. I’ll respect it, even though I might not agree with what they say.
“Just because we’re different, doesn’t mean I won’t like them as a person.
“I think a lot of people would do well to learn that lesson.
“Over the last couple of years, something else has kind of rung in my head,” Bob says. “And I’ve tried to follow it. It being that whatever I do, I do it out of love. Whatever it is. Some form of love. If I grab something in the grocery store and it’s not on our list but Jan likes it, I pick it up. It doesn’t have to be a grand gesture of love. It could be the smallest thing. It could be if her hand hurts, just opening the bottle of water before she drinks it instead of making her struggle.
"It could also be something I do for me. Taking that extra 10 minutes of working out. That’s loving me. I think a lot of caregivers forget to do that.
“Another thing that Jack’s taught me is that I need to take care of myself!
“If you don’t take care of yourself first - if you don’t charge your own battery - you can’t help your significant other either. You’ll burn out. You’re only hurting yourself if you don’t take care of yourself every day. I recognized that early on,” he continues. “Partly because someone brought it to my attention.
“You have to show love to yourself, too. You need to give yourself that time. It could be sitting out in the back yard with your dog. It could be sitting somewhere and just being quiet. Whatever works for you.
Feeling invisible and overcoming it
“In a big way, I feel invisible," Bob continues. "Rarely does anyone ask how I’m feeling or how I’m doing.
“As a caregiver, you do feel forgotten.
“I guess if someone would just say to me, ‘how are you doing?’ And actually want to hear how I’m doing, it would be nice.
“It’s difficult for me to read whether people want to hear how I’m really feeling or whether they’re just asking for the sake of asking. Like the, 'How are you?', 'I am find' type of social greeting.
“As a caregiver, you get that invisible feeling,” he says. “It sucks! Sometimes you feel you’d like some care placed on you, too.
“As frustrating as it gets, though, I always try to flip it around and be positive about it.
“I say to myself, ‘I’m choosing to let this be OK.’
“I’m choosing to let this person I love be cared for by others who ask about her and not me, and that's OK, because they know I can handle it.
“I have to do this for Jan. I have to! I do it all because I love this lady so much! She’s my soulmate. She’s the kindest person I ever met. She has so much compassion, such a good heart. She makes me laugh; she makes me cry. We share everything.
“I’m so blessed to be with her,” Bob continues.
“She’s my everything… so everything I do, I do for her. I do it gladly!”
Like the story? Like the cause?
We need your support to thrive and grow. Consider supporting Jack's Caregiver Coalition by supporting our mission in several ways: through membership, financial support, or with your time as a volunteer.
This Jack Story was brought to you by:
Visit AARP.org/caregiving for family caregiver information and resources.
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.
Catch up on any of the other Jack Stories you may have missed: