Caregiving for a Person With Metastatic Breast Cancer

This podcast is made possible by the generous support of Lilly Oncology.

Jamie DePolo: Hello, everyone. I’m Jamie DePolo, senior editor at Breastcancer.org. We’re podcasting from the 2018 San Antonio Breast Cancer Symposium. My podcast guest is Tim Watkins. He’s the owner of the Watkins Garden Center in Hudson Falls, New York, and he’s also the partner of Michael Kovarik, a man with metastatic breast cancer. Michael and Tim became a couple after Michael had been diagnosed with breast cancer, but not metastatic disease.

Today, we’re going to talk about what it’s like to date someone with breast cancer, as well as be a caregiver for someone with metastatic disease.

Tim, welcome to the podcast.

Tim Watkins: Welcome to you, too. Thank you.

Jamie DePolo: Okay. Now, you and Michael had met before, but you didn’t start dating until you connected a few years later, and that was after Michael had been diagnosed with breast cancer.

Tim Watkins: Right.

Jamie DePolo: Now, did you know he had breast cancer when you started seeing each other officially?

Tim Watkins: I believe so, but it definitely came out on that first introduction. We spent three hours talking one day — but we’d talked on the phone and emailed before that — but when we finally met face to face, it was interesting because we were both older — in our mid-40s, or our late 40s. So dating in that sense was a bit different. It was like, all right, this is what I’ve gone through in life, and this what he’s gone through in life, and you just say, "Alright, is it possible to take it from there?" And I’m sure, at that point in time, he disclosed his cancer.

Jamie DePolo: Okay. Did you kind of think about what that means, being in a relationship with somebody with cancer, or was it just one more piece of who Michael was?

Tim Watkins: I think it was just one more piece of what Michael was. Because at that time in life, I was looking to get involved with somebody on a deeper level, and he was an interesting man, and he just took it in stride. And so he was determined to beat it and not let it bother him and get on with life. And so that's kind of how we did progress with it, and we just continued to date, and actually it went quite rapidly into an arrangement. And so, yeah, it’s definitely interesting how things change as you get older and you look at things a lot differently.

Jamie DePolo: I’m sure.

Tim Watkins: But as far as the breast cancer went, it really was — for me, at that point in time — on the back burner. It wasn’t something that I thought was going to come up and really be too much of an issue, other than following the directions of the doctor, and he was going to get through it.

Jamie DePolo: Did you think at all about being a caregiver, and what that might mean at all, at that point?

Tim Watkins: Actually, with Michael, no, because at that point in time I was already a caregiver with my mother and later on with dad — but Michael didn’t come across as somebody who needed a caregiver at that point. He had his own way of doing things, and I was just along for the ride at that point.

Jamie DePolo: So, you’ve had experience with being caregivers for others as well, your parents. Was it different in a sense for someone who was diagnosed with cancer — and I don’t know, maybe your parents were diagnosed with cancer, as well — but was it different in that sense from a parent to a different loved one?

Tim Watkins: Yes, as it progressed, and where it turned metastatic — yes, it’s different. Because Michael was at a young age, compared to my parents. My parents were at the end of their lives, and whatever disease was catching up with them was part of growing old. In Michael’s case, it wasn’t that. It was something that was sneaking along inside of him and just struck out, and all of the sudden you’re dealing with this thing that could end his life, so it’s just like whoa.

Jamie DePolo: Right, right. So, in your mind, how do you explain what being a caregiver is? If someone would have a loved one who is newly diagnosed with cancer — breast cancer or any other type of cancer — could you talk about maybe how you would explain that to someone, what they might expect?

Tim Watkins: Well. Caregiving is complex. It seems such a small and easy word: "caregiving." Giving somebody help. But when you start to think about… When I get asked all these questions, I start looking at it and say, "Wow. I guess there is more to it than I think." Because there are times when I put my life on hold and deal with what he’s doing. A lot of my days off from the garden center are going to doctors appointments, and so I don’t have much of my time to deal with. So you have to kind of find a balance in life, and that’s the hard thing to do when you’re caregiving. You can’t lose yourself. That is a big one. It’s important that you keep communicating with your partner or loved one, and you still have to kind of set boundaries for yourself. You can’t help them if you’re not well yourself — and that could be just from a common cold, it could be getting terminally ill yourself from something else — but that’s kind of the hard part of these roles. But it’s the reward — because that can be some of the negatives — but the rewards are that through the communication with the person that’s ill, you gain so much more depth to your relationship. It’s more part of a web, instead of just him and myself. It just becomes our friends that are involved with us, and our family, and everybody’s concerned, and it’s just wonderful in that sense. It just brings out the best in everybody.

Jamie DePolo: Did you find your role as caregiver changing when Michael was diagnosed with metastatic disease? Was it different than it was previously?

Tim Watkins: Definitely, definitely. When Michael and I started dating and became in a relationship, Michael was an independent person and he had his own job, he had his own house, as I did. And so we each kind of were separate entities and he was in a job, and he took care of himself. I went to the appointments, but I was there just more as somebody to listen, and he’d ask questions, and more for support, you know, to give him a hug if he needed a hug. When the other diagnosis came about, it’s almost like waking up and saying, "Oh my gosh, I have to pay more attention, because I don’t know the answers to the quiz!" So, you have to really listen to what the doctors are saying. You have to… Some people go online and get more information. But yeah, it’s definitely taken a more active role in his whole world and that’s where — the part that I was talking about earlier — that it’s important to keep your own identity, because you can get lost in somebody else’s world, and there still is a body inside of me that needs attention.

Jamie DePolo: Absolutely. And that is one thing that people talk about — who are caregivers — that they feel so burned out, but they don’t know how to help themselves, and I guess... Did you find a way to do that? What kind of worked for you?

Tim Watkins: Well, what works for me is… There’s letting go. If Michael wants to go to a conference and I can’t go, I’m okay with that. And I have to let him go and know that he will find his way through that. And if he bumbles and misses an appointment or something, he missed an appointment. Those types of things are not life-and-death threatening. And he’s surrounded by people in his group of friends, at these conferences and things, that will take care of him. And that’s the second part — reaching out to other people. You know, everybody says, "Call me if you need help." But a lot of times we never call. So we are not afraid to call our friends and say, "Hey, we’re going to this conference and we need help with our dog, Polar," and they’re right there. And if they can’t do it, then you’ve got another person to call — but reach out.

You also need to have that downtime and your own space and things. And so when he’s gone, and I have the whole house to myself, it’s wonderful. It’s not that I wouldn’t want him to be around, but really, I have to do my own thing. And that can be true when he’s in the house — I don’t have to be right there in the same room, thinking, "Oh, my gosh...."

Jamie DePolo: Right, right.

Tim Watkins: I have to do what I need to do.

Jamie DePolo: Okay. That’s good. And I imagine that some of that is going to be individualized for people depending on their situations, but that sounds all very good.

Tim Watkins: And I will say, feel the guilt and work through it.

Jamie DePolo: For taking care of yourself?

Tim Watkins: Right.

Jamie DePolo: Yeah.

Tim Watkins: Because if I go skiing for the day — and Michael doesn’t ski — I have to stay in the moment, enjoy every moment of the skiing trip, and just be with that, and not... I don’t want to say, "Don’t feel guilty" — you're going to feel guilty — but it’s okay. It’d be not being human to not feel those feelings.

Jamie DePolo: Absolutely, and I think the point that you made, too, about calling and asking for help is really important. I know a lot of people are afraid to do that. They don’t want to impose, they feel like they should be able to do it all themselves. But, from my experience, it’s like — people do want to help, but they don’t know what to do unless you tell them.

Tim Watkins: Right.

Jamie DePolo: Like you said with your dog. And that’s something that's fairly easy to do and can make that person like, "Oh, I’m helping."

Tim Watkins: Yes. Yeah, and it’s so true.

I mean, Michael's retired and I’m not. I work the garden center, and I work at a ski resort, and so it’s — I can’t not do those things, I have to do those things. So, I said to Michael, "If you need to go and do something, or if you want to travel to New York City, or go here or there, call another friend and they’ll go with you. It’s okay, we don’t have to everything together." I look at life a little differently than a lot of people, I guess, because as much as you want to be together with your partner, we’re all doing this life alone. There have been so many times when… I’ll give you a for instance: I’ll look at the moon with Michael, and I’m out there for hours, it seems like, and he’s out there for like 5 minutes. And so whether he’s there or not, you still have to enjoy the moment, so you’re going to experience it differently.

Jamie DePolo: Right. That’s a very good thought. And to wrap up, if you could give other caregivers a couple pieces of advice, what would be tops on your list?

Tim Watkins: Well. One of the things that I would say is bring a pad of paper to the doctor’s office, and don’t be afraid to ask questions. Your doctor should understand. If you don’t understand something, and you don’t ask, you’re not going to get the right response, and the right answers, and the right course of action.

The other thing is, as I mentioned before, is reach out. There are people that want to help you. And don’t be afraid to talk to a stranger about things. I have customers at the garden center that they’re just wonderful. We’ll get on such a deep level in a conversation — after the sale or something, or as they come in — and it’s amazing how people just want to help each other. They give great hugs.

Eat well. Keep living your life. I mean, as much as you want to help everybody, but you got to help yourself to keep healthy for that person.

Jamie DePolo: That’s great. Tim, thank you so much for joining us. I really appreciate your time.

Tim Watkins: Thank you, Jamie.