Transcript of Part 1: My Experiences as a Bladder Cancer Caregiver with Beáta Baker

October 28, 2021

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or, as many call it BCAN, producers of this podcast. This podcast is sponsored by Merck.

Rick Bangs:

I’m excited to have Beáta Baker, wife of bladder cancer survivor Stephen Baker, and also his caregiver as my guest today. Beáta and Steven started a particularly challenging bladder cancer journey in August of 2011. Beáta, I’m so pleased to have you here today to talk about a topic that never gets enough discussion and recognition, caregiving.

Beáta Baker:

Thanks very much, Rick. It’s quite an honor to be here today with you.

Rick Bangs:

We’re thrilled to have you. I want our listeners to hear Steve’s story to get a sense for the challenges he faces as a bladder cancer survivor. And some of those challenges are a little unusual. But I also wanted them to hear the important role that you played in advancing him through that journey. So let’s walk through some of that journey together, starting with having you describe what’s happening with Steve during each stage, and then what’s happening with you. So let’s start with diagnosis. So Steve was diagnosed in 2011. How did that happen? What were his symptoms? And how did that diagnosis come about?

Beáta Baker:

Well, somewhere in 2010, he started having blood in his urine. And it would come and go, and there was never any pain, and he just thought it was something weird. But he did get in touch with a urologist. And he had the usual tests and there was nothing conclusive. So, he didn’t worry about it. It happened to be a particularly busy time for him in terms of work. And we were traveling quite a bit at the time as well. So he just went along his merry way. And I don’t like to divide things along gender lines, but I do think that men tend to put things off. And so the blood would come back, but it still didn’t hurt. And then it would go away. So he figured it’s just some kind of weird thing that’s happening.

Beáta Baker:

As the months wore on, he started getting weaker. And that was the thing that made me realize that there was something seriously wrong. Because he’s kind of an ox. He is a strong guy. He played football in school. He’s just strong guy. And we walk every day, that’s one of our things. Ever since we started dating, we walk every day. Usually we do three to five miles. And we had gone to Whistler to help a friend celebrate a major birthday, and he could not get up the easiest hills. Something was definitely wrong. And he had developed an unproductive cough. I said, “You know, maybe you have walking pneumonia or something.” I said, “Let’s just go and get you checked out.”

Beáta Baker:

So we went to just a local hospital, not even a hospital, just a local medical center. And people were saying, “Oh, it’s probably your heart. Oh, it’s probably your lungs.” It wasn’t any of those things. And then the last thing that they gave him were blood tests. And the results of the blood tests were, “Oh my God, you have no red blood cells. We don’t know how you’re walking. You have to go to the emergency room right away.” So yeah. And it was like, “Huh?” And so we ended up going to the emergency room of a local hospital. And they had called, evidently that medical center had called ahead of time. And the nurse came flying out the door and she said, “Oh my God, get into a wheelchair. I don’t even know how you’re walking, you have so few red blood cells.” I know, it was just one of these crazy things.

Beáta Baker:

And so he had evidently a scan that showed that he had a massive tumor in his bladder. And who knew? Unfortunately, he had taken some aspirin earlier in the day and they did not want to operate on him because of the aspirin factor and what could be the bleeding thing. So we had to spend… I think this was a Wednesday night that we went in and they couldn’t operate until Friday morning to take out this softball size tumor.

Rick Bangs:

Wow.

Beáta Baker:

Yeah.

Rick Bangs:

Okay. But I want to back up a little bit. So he has blood in the urine and you said that he got… I think you used the term “usual tests,” something like that.

Beáta Baker:

Yeah. Yeah.

Rick Bangs:

So what does usual tests include? Did that include a cystoscopy or not?

Beáta Baker:

It was supposed to. And here’s the thing. He had some other tests where it was nothing conclusive. And then when this didn’t seem to be going away, he tried to schedule a cystoscopy. Is that correct?

Rick Bangs:

Yes.

Beáta Baker:

I’m sorry.

Rick Bangs:

Yep.

Beáta Baker:

It’s a tough one.

Rick Bangs:

Yes, it is.

Beáta Baker:

Cystoscopy. And the first one that he could schedule, it was six weeks away that he could do it. And then when the time came, he got… We work for ourselves, and so he got a very good paying job and he said, “You know, I just can’t do it. I can’t pass up this money.” And so he rescheduled it, and that was another six weeks. So I think if he had had that first one or if we had just insisted on a cystoscopy right away and scheduled it as soon as the blood showed up in the urine, it would not have turned out to have been what ended up as a T2b tumor that was muscle invasive.

Rick Bangs:

Okay. All right. So we’ve got the softball sized tumor. So I’m assuming you have… So do you have the cytoscopy now? Does he have the cystoscopy? Or because it’s softball size, we move right to the TURBT, where they’re actually, doing the pathology and so forth?

Beáta Baker:

Yeah. Bingo. We moved right to the pathology on the tumor. So he had the surgery on a Friday, and the following Wednesday, we go into the doctor’s office and we find out that it’s muscle invasive bladder cancer.

Rick Bangs:

Ah, okay. All right.

Beáta Baker:

Yeah.

Rick Bangs:

So you find out it’s muscle invasive and now it’s kind of plain vanilla urothelial, none of the kind of abnormal variants or more unusual histology. Not that it’s good, but it’s not one of these other things.

Beáta Baker:

Yeah.

Rick Bangs:

All right. So up to this point, now we’ve got the diagnosis. And so caregivers are playing a lot of different roles, and I’m using the plural roles. So talk to me about the roles that you are playing as this caregiver during this very important diagnostic phase before they’re even talking to you about treatment possibilities.

Beáta Baker:

Yeah. And it’s pretty simple. I really was there to be a scribe in the doctor’s office, a scribe and a translator. Since I’m a writer, I take notes everywhere I go anyway, and this was a natural thing for me. And I just would write down everything that the doctor said. And then we’d go home and I’d read it back to Steven and he would not have heard two-thirds of it, which is normal.

Rick Bangs:

Well, yes.

Beáta Baker:

Because as you know, you hear the word cancer and you just go into this cold gray fog of shock.

Rick Bangs:

Right, right. You don’t hear much more. You just hear that.

Beáta Baker:

Yeah. And so besides that, this is going to sound kind of a crude, I suppose, but you’re really kind of there to be a heat sink at first. You’re just kind of there to take whatever the person with cancer has to process. Steven’s coping mechanism tends to be he has to let himself just go straight down into the abyss. He’s not a sunshine and lollipops kind of processor. His thing is he’s just got to fall all the way down to the bottom so he can imagine the worst. And then he starts the, “Okay, now how do we fix this?” But his brain has to go to the darkest areas first. And I was really just there to listen and to say, “Okay, yes, but,” and try to give him those little lights so he could find his way back up out of the hole, out of the abyss, and then we could start going to battle, which is what you do.

Rick Bangs:

Okay. So in terms of getting up from the bottom, some of us, and I put myself in this category, some of us need information. Was that part of your role, to get more information and more clarity? Is that something he was taking on? How was the information gathering piece happening at this point?

Beáta Baker:

Well, I’ll tell you, things moved pretty quickly. And it was really that day that we got the pathology back from the tumor and we knew that it was muscle invasive cancer, and our doctor there… And is it okay if I say his name, because I kind of want to give him a shout out?

Rick Bangs:

Sure.

Beáta Baker:

Okay. This was Dr. Scott Van Appledorn, who works out of Kirkland, Washington as part of the Evergreen System there. He gave us actually our first glimmer of hope because he said the word neobladder. And when Steven heard muscle invasive bladder cancer, he thought, “They’re going to take my bladder. I’m going to get a stoma. I’m going to have a bag.” And those were two things he just knew he didn’t want. I want to say that, like you, he was a young man when he was diagnosed. He was only 52 when he was diagnosed. He’d never been a smoker. He’d never worked around chemicals. The only thing we knew about bladder cancer, it’s usually 80-year-old guys who’ve been smoking and working with tanning leather all their life or something. We had this completely different image of it. He was so not a candidate for bladder cancer. But as we know, any human being is a candidate for bladder cancer.

Rick Bangs:

Well, you actually knew more than I knew because I didn’t even know that.

Beáta Baker:

Yeah. That’s the only thing I’d ever heard about. It’s old guys who’ve been smoking for 50 years. And so once Dr. Van Appledorn even mentioned, he said, “You know, because you’re young and you’re healthy, you will probably be a good candidate for a neobladder.” And that was like, “Wow.” So that was the first glimmer of light, he actually shined that little flashlight of hope. And that helped. And then the other thing he did was that he said, “Look, I can get you through this. I’ve done tons of these. But let me call the guy who I think is the best guy in the state.” And I thought that was kind of remarkable. I think when you’re a healer, you can maybe get a healthy ego established and think that you’re it, you’re the one. And I loved the fact that he said, “Let me call this guy because you’re going to want a second opinion anyway. And so let me call this guy and see if he can see you.”

Beáta Baker:

And that guy happened to be Dr. Jonathan Wright, who was a surgical oncologist with the University of Washington Medical Center. And he ended up being who we went with. Not that we didn’t love and appreciate Dr. Van Appledorn, but we just got a really, really good vibe from Dr. Wright, from his background, and just from the UW medical center at the time as well.

Rick Bangs:

Okay. So that brings up the question as to how did the two of you decide on the right doctor, the right hospital, and the right treatment? And no pun intended, since you ended up with Dr. Wright, who spells his name a little bit differently.

Beáta Baker:

Exactly. Yeah, that was just kind of a fun little omen almost in there. You know, we had had a perfectly fine experience at the hospital system where he had gotten his tumor taken out. It was perfectly fine. But there was just something at the UW where it just felt better. Honestly, it was just… It’s a vibe. And I know that sounds really vague. Bt all the components of what we were dealing with, the communication, everything, the team that was kind of put together right away. Because once we got Dr. Wright, we also got his medical oncologist, which is Dr. [inaudible 00:14:22]. We did not see her as often as we saw Dr. Wright, but she was the one who came up with the chemo treatment plan. And we also had a phenomenal ARNP, Susan [inaudible 00:14:35]. She was basically our case manager for lack of a better word. She was our producer. She was the person we’d call when we have a question to then contact everybody else to make sure that we knew what was going on, that if there was a problem, it would be solved.

Beáta Baker:

And so the fact that that team came together so quickly and they had such exacting information, we just thought, “Okay, we’re in the right place.” Even though it was a drive across the lake, we live on the east side of Seattle. So you drive across one of those floating bridges to get into Seattle. And we thought, “Let’s do that. Let’s be here.” We just really had confidence in Dr. Wright.

Rick Bangs:

So how long does it take you to get across using the floating bridge, door to door?

Beáta Baker:

Well, it depends on time of day, doesn’t it? [crosstalk 00:15:32].

Rick Bangs:

Of course. It’s a big city.

Beáta Baker:

Yeah. And if it’s rush hour, it can take you 90 minutes. It normally takes 25.

Rick Bangs:

Okay. All right. But relatively close. And so you got the referral, you went to see Dr. Wright, and you felt like this was right. You felt like, again, no pun intended, right.

Beáta Baker:

That’s okay.

Rick Bangs:

But you felt comfortable with the team, you felt comfortable with the approach. They seemed to answer your questions and shared information.

Beáta Baker:

And there was one more thing that Dr. Wright did that gave me utmost confidence in him and I saw that he was a man of compassion, which was important to me as well. He gave Steven his personal cell phone number. Now, I don’t know if that’s a regular thing. I’m not saying every doctors got to do it because you could get inundated.

Rick Bangs:

Some of them do.

Beáta Baker:

But I was really appreciative of that because he did use it a few times.

Rick Bangs:

Right. I always say, if I’m looking for a surgeon, I want three things. I want head, I want hands, and I want heart.

Beáta Baker:

There you go.

Rick Bangs:

And so it sounds like you found somebody with all three of those, which is just awesome.

Beáta Baker:

And my fourth H is humor. I need somebody… You’re in such a dark place, you’ve got to have somebody who can either prompt the funny or appreciate the funny, if you’re the one who prompts it.

Rick Bangs:

Agreed. Agreed. Four Hs from now on.

Beáta Baker:

Yeah.

Rick Bangs:

Okay. All right. So I often hear doctors and nurses talk about this thing they call shared decision making. And basically that means the doctor and the patient are mutually agreeing on a decision. But it’s actually a little bit more than that, isn’t it? It’s the doctor, the patient, and the caregivers, partners, and family. So what roles did you play during treatment planning?

Beáta Baker:

Well, the first thing that I had to do was just really acknowledge the fact that this was happening to Steven’s body. And so ultimately, he was the one who got to make the decisions. And I just had to respect his wishes. Because I was a caregiver, but it’s his body, his journey. Now, because he was so young at the age of 52, 53, if he had said, “Oh, no, it’s just my time. I don’t want chemo,” I would’ve put up a fight. But clearly, he was a young man, his prognosis was actually quite good because he was relatively young and healthy. And because the neobladder was something that he really wanted, he was very determined to not have to have a stoma and a bag on the outside. If it would’ve had happened, of course once he had his big bladder removal surgery and the neobladder construction, you’ve got to be ready for that. You go stoma class and you get taught that in case during the surgery, they find out, “Yeah, your ureters are the wrong length, it’s not going to work,” you’ve got to be ready for that. But he was really hoping that he would not have to have that. Not that there’s anything wrong with it, but he was hoping the neobladder would be for him.

Beáta Baker:

And so we learned about that. We learned about that his chemo was going to be the MVAC chemo, which is… I’ve got all the names here if you want them. But it’s heavy duty. The last thing… The C in MVAC is cisplatin, and that’s platinum, that’s a heavy metal. It really takes it out of you. And his particular treatment was going to be two days of chemo, where they split up all of the ingredients that have to go into him, every two weeks, four times. So it didn’t seem that onerous, but even the short chemo day was never shorter than 10 hours, because they’ve got to pump saline through your first and there are just all these things that happen. So even though from the outset it seemed, “Oh, eight days of chemo. How bad can this be?” Well, you find out.

Rick Bangs:

Okay. So speaking of finding out, so now we’re in the treatment phase, and Steve had a particularly difficult time. So what happened?

Beáta Baker:

Okay. So for the chemo, they decided to put a PICC line into his arm. And that’s this device that gets inserted into your arm and then gets threaded through your arm into your chest, into, I guess, a major artery, I’m assuming. And that’s where the chemo goes in and out of. It can’t go right into a vein because it’ll burn it up. The reason the PICC line is chosen usually is because it’s less expensive and it’s not a surgery. It can be done in a room under sterile conditions. The PICC line gets inserted. A PICC line nurse is used. It’s not even a big deal as a port-a-cath, which is a surgery gets put into your chest closer to the artery.

Beáta Baker:

So because his chemo, the MVAC, was pretty intense, we got pages and pages of information about what kind of nausea and what kind of… More nausea-related and lethargy and unease. We got warnings about that, look out for signs of that. We didn’t really get told about possible blood clots. That was just kind of either pages away or we just didn’t hear it at the time. And of course I found out later that chemo can cause blood clots, cancer causes blood clots. You’re basically in a blood clot friendly situation when you’re undergoing treatment. And so we had been paying so much attention to the nausea part and making sure we had all the anti-nausea meds, that we didn’t know he was forming a blood clot in his arm. Now, it looked swollen to me, but I thought, “Well, he’s got this foreign object in his arm.”

Rick Bangs:

Right. Because you have no frame of reference on what this should look like.

Beáta Baker:

Exactly. And so he had gotten his first round of chemo and he was not feeling good. His breathing, I could tell at night that his breathing was getting really shallow and rapid. And I thought, “Okay, this is not good.” But because his chemo was two weeks apart, it was really in that second week that he appeared to be in distress. So we go in for his second chemo treatment, into the chemo ward, and the nurse takes one look at him and says, “You are not having chemo today. You’ve got a massive blood clot in that arm.” And he gets whisked away to what’s called the telemetry floor, which is basically a floor in the hospital where you’re monitored every second. And they find out that he has this massive clot going through his arm into his chest and that he had had a pulmonary embolism.

Beáta Baker:

Oh my God.

Rick Bangs:

I know. And it’s like, who knew? So he makes it through, makes it through the day, makes through the night. They put him on blood thinners immediately. Of course, the kind that are… We learned a lot about blood thinners because of this incident. We learned that there’s something called [Lovenox 00:23:20], which is fabulous because it doesn’t last in the body. It just has a 24-hour cycle. And you don’t have to worry about your food or anything else. But it’s crazy expensive. It’s just crazy expensive. But that’s what they put him on to get through this period. And then they had to kind of recalculate what his chemo schedule was going to be because he had to recover. That’s when, once he got strong enough, he had a port-a-cath put in. The PICC line was taken out. The port-a-cath was put into his chest. So that’s a surgery that you schedule.

Rick Bangs:

But the port-a-cath, and I understand that it’s a surgery, it’s more expensive, but the port-a-cath is also a one stop shop. You can get all your blood draws in and out of the port-a-cath, and you can get your chemo in and out of the port-a-cath. That doesn’t happen with the PICC line. You don’t get your blood draws out of the PICC line. And I wish we had been given a choice at first, because you get so many blood draws. You know this. You get so many draws during treatment, and your veins really start to revolt after a while. They just said, “I’m not doing this anymore.” And you start needing a vein whisperer just to get the simplest blood draw. But with a port-a-cath, everything happens from that space. So that’s kind of when I find out that friends have cancer, that’s the first thing I ask them now. It’s like, “Are you going to get a port-a-cath?” And then I give them 20 reasons to get a port-a-cath and to insist on it.

Beáta Baker:

And insist on a vein whisperer, I would think.

Rick Bangs:

A vein whisperer. I remember one day where I think he had six attempts and they couldn’t find a vein. And finally they brought in this guy, who they say, “Oh, so, and so’s a vein whisperer.” And it’s like, “Well, why didn’t we get him to begin with?”

Beáta Baker:

Exactly. Sorry, I want the vein whisper from the beginning.

Rick Bangs:

Staffing is staffing. What can you do?

Beáta Baker:

That’s all the time we have for part one of being a bladder cancer caregiver with Beáta Baker. We’ll be back to continue our conversation in part two next week.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patient. For more information about this podcast and additional information about bladder cancer, please visit BCAN.org.