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Getting a cancer diagnosis is overwhelming not only for the patient but for their family as well. We might assume that the caregiver is the one who can be fully present and take in all the information to help and support the patient. But, as you will hear from Jason, that is not always the case…at least not at first.

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Podcast Transcript

LOREEN: Welcome to Pep Talks, a patient experience podcast where we share stories of promise, our culture of connection and care.

In this episode, you'll hear a slightly different perspective on the cancer experience that of one of our caregivers.

Getting a cancer diagnosis is overwhelming not only for the patient, but for their family as well. We might assume that the caregiver is the one who is able to be fully present and take in all the information to help and support the patient. But as you'll hear from Jason, that's not always the case, at least not at first. As he navigated this unchartered territory with his family following his wife's cancer diagnosis.

JASON: So I'm Jason Beaver. My wife, Joanne, was diagnosed with breast cancer in 2012, and we ended up seeking treatment here at Moffitt Cancer Center. It started for us. My wife was at the pediatrician's office with two of my children and her omega and called her and told her over the phone that she has breast cancer and she's sitting there with the kids, you know, try and hold it together. And then she turns around and calls me and tells me over the phone what had just happened.

You know, I pulled over on I-4 and I just I bawled I  sobbed and I cried. I fell apart. The whole world kind of disintegrates. How was I going to pick out the best person for my wife? You know, to to fix this, to get us, you know, back to the way we were? And that's it. Just the weight of the world just came down on me at that moment.

I didn't know what to do, and then I remembered a friend of mine that worked at Moffitt.  Braulio Vicente,  and I tried to call call him, and I told him what had happened and. I still didn't have myself together, and he said, Jason, you have to get control yourself. You have to be together to help your wife. And he said, we're going to help you do that at Moffitt. We'll get a plan together. We'll talk to some people. I know some people will figure it out, but we'll get you scheduled. You'll get in here and we'll work it out. And at that moment, like, I just lost my whole life, it disintegrated, right? And then I just got a little bit of it back. I got my legs underneath me for a second. I don't think he even knew how much that first few seconds of what he said to me, how important that was.

So when we got my wife's diagnosis, I learned a lot. I'm the caregiver, I'm not the patient, which I think gives me a whole different set of fears and concerns.

So think of it this way. When my wife is going through surgeries and treatments, I'm now learning what she's been doing for our family for the last 15, 20 years, right? I didn't know what goes to my kids lunchboxes. Think of how daunting of a thought that is. You know, I'm standing here and I have empty boxes and I don't know where to get the fridge put in there. I don't know how car line works. You know, you don't know the teachers names how to register kids for school.

I'm feeling guilty. I'm scared that I'm not going to pull this off and, you know, have other guilt too. As a caregiver, I'm supposed to carry the weight and take it off of my wife and your mind. My mind goes to the worst possible case scenarios. If she doesn't do well, what will my Plan B be? And then I have guilt for thinking that way and then thinking about you hear stories where you know somebody that love somebody with cancer, you know, scoop them up and help them push on through the most difficult times when they wanted to give up. Does my wife want that or if our journey is different than that and we're supposed to let her go?

You know, we have this diagnosis, and again, I'm the husband and I'm the strong one, I'm going to take care of this. I'm going to fix everything. Don't you worry, I got this, you know, an inside. I'm just a mess struggling with how much do I tell my kids their different ages? You know, I think at the time, though, this was like 12 or 13 and the youngest was eight. If I tell them everything's going to be OK and then they're not OK. What does that do to their trust in me or how they think about things in the future? And if I tell them it's really scary, it's not OK, but how are they going to function every day?

So as a father and a husband and a caregiver, I'm trying to balance this out and figure it out. And these are the things that were weighing me when I was sitting in the lobby waiting to come in and be seen by the doctors and the nurses.

I know I know the staff and the nurses and doctors have people like me every single day just wearing them down because they're not, they can't hear, they're not listening. And then I'm going to call back the next day and ask the same name questions. And they were so wonderful in allowing me to work through it and to get to a place where I could take advantage of their knowledge and their information. All along the way, people did things and said things and pitched in the just completely what the right word his supporters held us up helped us get our legs underneath us. So we could, you know, fight our battle, you know, in the way we thought we needed to fight it.

The things that we took away with us were probably not things anybody would have thought were the most important thing by far. But what we go home and write on Facebook about or tell people at church or bragged other people about is the care that we got at Moffitt. I think there's a difference between treatment and care. Treatment is you're going to get this drug for this many days. The care is when they're listening to you and they understand how you feel and they ask how you feel. And, you know, sometimes it takes a whole team to fill in those gaps, you know, not any one person. You know, some are better than others, but that's a complete package that's hard to come by somebody that can do all of those things.

We found it at Moffitt, though the nursing staff, the valet attendant, my wife after surgery. My wife was in obviously tremendous pain. She's in a wheelchair and 10 double mastectomy with reconstruction and the valet kid I call the kid who couldn't have been 16. If he could drive a car, I guess he could his valet, right? He's wheeling her out and then he stops and he goes around to a different door. But I didn't catch on, but then I saw outside that door had cobblestones. It is bumpy for the person sitting in the chair, and that has stuck with me that he took the time and thought that that was that important to do it that way.You know, there's things like that all over the institution.

So there's a nurse that would take my wife's blood. Every time you come in, you know you go to blood draw. There was a wonderful, beautiful woman there. Her nickname is pickles. I feel so bad. I can't remember her name. My wife had a port and she was so anxious about getting the port access every time she came in. So Pickles knew just how to talk to her, how to touch your shoulder. It was so reassuring to my wife, and anything that reassures my wife is good for me, right? You know, I mean, it's a tough, long day if everybody is stressed and things are difficult and scary and painful. Pickles she came out of out of her own way, like to invite us over out of the way, have us into her little baby, talk to my wife and do everything and remember, you know, our stories and our kids and stuff.

And it was just, I don't think anybody knows how important that is.

Dr. Khakpoour was was Joanna's surgeon. She's amazing. She's fantastic. I recall one specific point in time where we were waiting on results. And it was going to either be the best news in the world or the worst news in the world, you know? And we want that information before the before the three day holiday, you know? Otherwise your stomach's just, you know, upside down and twisted and you just you're in that dark place. You're like, it's going to be a horrible three days without that information, you know? And just just so thoughtful. Get a phone call from her like at eight o'clock, you know, on Friday night. I know she's been in clinic all day long. There may be in the O.R. all day long. Then she's going to dictate and return phone calls and the administrative stuff. She hasn't seen her family yet, you know, and she's made a phone call to us to make sure we get the good news so we can enjoy the weekend. Can you know? That's important stuff.

When my wife, Joanne and I leave Moffitt and we go home,

we don't we don't remember how much of our kids are has gone away or how successful things are. What we remember is the little things that every one of the team members do for us.

They don't cost money to do for people. It doesn't take a whole lot of time for most of these things, but that. Being present for a patient and hearing what they're saying, you can change, you can completely change how they feel about their experience, what you do. You may not think there is a lot behind that or it meant a whole lot or you just going through the motions on that day. Every little thing you do for a patient is is so important we really take it to heart. You are the face of Moffitt, and when we leave here, that's what we remember is how you treated us.

 LOREEN: Thanks so much for listening. We hope you'll join us for our next episode of Pep Talks. Until then, keep living the promise.


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