What You’ll Learn

A woman shares her vulnerabilities in the face of cancer diagnoses for herself and her father. With a deep distrust of pharmaceutical treatment, she reveals the complexities of caring for patients who bring their vulnerabilities and misunderstandings into the healthcare system–as well as insights on ways to build trust with them.

Interviewee: I’m 49 and live in Los Angeles, California. Highland Park area, close to downtown.

VIVO: What are your hobbies and interests?

Interviewee: I’m currently addicted to TikTok, which is not good. I look at one thing and then I came to the reality that I’m hooked on shopping on there. It could be a good thing or not. And I’m a big tennis fan, but I don’t play as much, so my son is into it now.

VIVO: Where do you find inspiration? 

Interviewee: I slow my overthinking and stop, take a deep breath. I don’t think about goals anymore because I am very in line with the universe or spiritually. If I worry too much, I feel like I’m kind of killing myself with it. So I’m like, okay, whatever goal, letting it go. Be realistic about it. So my goal is not to have any goals.

VIVO: You’re a cancer survivor?

Interviewee: Yes and no. My dad is a cancer survivor, lung, and then he had another issue that killed him that was not lung, which is interesting.

VIVO: So, you were his caregiver? Can you take me through his story? Maybe before he was diagnosed, where he was diagnosed, and so on.

Interviewee: He was never a smoker, which was the funniest thing. And they found something I remember years ago, I want to say between 2015, they found something in his lung and right away they thought it was COPD. He never smoked, not even marijuana, but his breathing was a little off. So then the coughing was worse and they gave some sort of medication or radiation, but then when he disappeared from that and then traveled and would go live in a remote part of Mexico, he wanted to do that because he thought maybe the environment wasn’t for him.

It was kind of a miracle because when he came back, all of a sudden that whatever they found wasn’t there anymore, the tumor. So it was like from this big to this small, and they swore up and down that it was the medicine that they gave him, which he never really was consistent with. He was very into herbal stuff. So that didn’t kill him. Years later, about 2018, he got diagnosed with colon cancer.

And he thought, “I’m going to do the same thing, go over there.” But because of his condition, he was so weak and tired. And mind you, I took a lot of time off so I went with him. I wasn’t going to leave him by himself. And when I went with him, the reality was we couldn’t make it. His doctor was not going to give him the okay to travel because he was getting weak and weaker. And if anything, we always thought and agreed that the medicine made it worse. He passed away but he wasn’t ever afraid of death because he kind of knew… He was always on top of his health. Always kept his doctor’s appointments. So it’s not that he didn’t trust the medical field, he didn’t trust the pharmaceutical companies because they just, “Here, take this, take this.”

Now the closest story to me was when I happened to get an exam, my dad kept on me and I’m thinking, maybe I’m a hypochondriac because I’m thinking I see him doing this and so there I am doing that too. And I went to a part in my life around 2015, where I had to manage my work and I was stressed out and I was like, I need to have a cigarette. And I never smoked. It was getting that little buzz feeling of it. I remember somebody smoking and then I said, “Can I have a little bit?” And it gave me a sense of a high kind of in a sense, because I’m not a smoker. So I did that for a little bit.

And I don’t know if I was manifesting it, but a different doctor, it was Kaiser. They told me, “Oh, there’s something in there.” So I was like, really? So that got me really depressed and I get depressed very easy. The story that I have to it is I decided not to do anything about it and to stop because I was killing myself mentally. So I’ve always said if I have something and I’m not feeling it, I don’t want to know. It sounds not a lot of people, they will look at me like, “Are you stupid or something?” I’d rather be stupid, whatever but it was like I was losing weight, I was not eating, and my dad was the opposite and I can’t be like that person that he was.

So then I always would wonder and ask him when I was going through that and say, “How the hell did you do it? How did you walk around with that feeling?” And I think what it is, mentally he never talked about it. Because it wasn’t one time, it was a lot of times where it was… I forgot the name of the cancer. It was a tumor that was spreading. You could see it, and it was slowly spreading and the oncologist said, “Oh, we got to come up with this treatment and that treatment.” And my dad zoned out. And whatever his research was, and he goes, “It’s all the processed food and this fricking thing that we’re eating in LA.” And so I thought that was the best decision for him to be in a remote place in Mexico.

VIVO: So you went with him?

Interviewee: I went with him and it was very nice. We stayed at one of our family members… I mean, in my mind I thought we were going to be in a hut. But it was a nice house by the beach and a private area, very affluent area, and everything’s organic. And so I don’t know if that was the mentality that he had or the positive thinking of that, because we never talked about it. So in a sense, I kind of forgot about it. But the one that did get me more, because I saw the actual symptoms, was the colon cancer. So then I’ve always wondered… And then when it happened to me, I’m like, what kind of exams are they using that they determined that?

VIVO: Was he in Mexico when he passed away?

Interviewee: No, he was here. This was when the first they told him about the lung tumors, the cancerous tumors. And then when he was there for six months, he did a one-way ticket. Because he was very healthy. And coming back, we came back about the six month… I was kind of semi-retired, kind of working from home before it was a thing. And when I came back, then he happens to go to the doctor visit. He looked to me, he looked like he was a brand new person. In fact, the stuff that he was eating here made him more sick. And the stuff over there wasn’t, it was the opposite.

But the thing with the colon cancer, we knew. It’s like, I don’t know if it’s something that we knew because the symptoms were there and he was very realistic like, “Okay, cancer runs in the family.” And so it went from… That got him quick. It was two years at the most. I mean it was from 2018 to 2020. Anything he would eat, it was like, and then so I will then mention, I go, “Maybe we should go back to Mexico.” I kind of felt that he’s like, “I don’t think the doctor’s going to give me.” Because he was very realistic. “We could try, but the doctor’s not going to let me,” because he was very weak. “The doctor had to give me the okay to travel.” And always followed doctor’s instructions. It was the pharmaceutical and the processed foods that he didn’t trust.

VIVO: Did he go through treatment for his colon cancer?

Interviewee: He did. He did everything that was… But he was always the type to… In the beginning it was more like, what are the choices? Don’t give me this, this, this. And we were reading a lot of stuff about it. Mixed feelings about it because they have this little, when you complete the whole thing, they have a little bell, a celebration, and then you ring it. And I remember going to the office hearing it, and in my mind I’m like, “That’s bullshit.” I mean, it’s so deceiving because as I went to the office with him, I would see people that never showed up or that had passed. So I was always very realistic about things.

And that’s something that we are, like don’t sugarcoat it. That was bullshit. So to me, that kind of got me upset, but I get it. Some people wanted a little bit of encouragement. But deep down, maybe because I’m a spiritual person, we knew that… I mean, that’s part of life, I guess. I always wish that maybe… We have always asked a lot of questions. It’s like, “What if that thing was similar to me?” Could it have been something else? I question a lot of things. So it’s not that I don’t put the pressure on the doctors. They’re doing whatever they can, whatever’s available to them. I have a lot of mixed feelings about everything.

VIVO: So let’s talk about you.¬†

Interviewee: Yeah, it was the same. I asked for a second opinion and I have Kaiser. So Kaiser is very hard to get a second opinion. You get a second opinion, but from the same network. And so then I was feeling kind of hypochondriac because I think, you know how they say, “Oh, why am I feeling the same?” And I went through, and I was in denial, “How many cigarettes do you have a day?” “Oh, one.” Bullshit. I was having a pack because I was chain-smoking because I was so nervous. And I’m not a smoker. I mean, I hate it. I hated it, but I’m thinking, “Why am I doing it?” So I don’t know if it was something that says don’t do it, don’t do it. And so then when I started seeing people coughing, I would do the coughing too.

So in my mind I thought, because I have a friend that’s a therapist. She’s like, “You’re probably a hypochondriac.” I go, “What the hell is that?” I know the word now. Whenever you see somebody sick, especially caregivers, they tend to feel the same way. And it’s happened in the past. I go, “You’re right, I probably am.” But then it’s like if I would hear somebody coughing, I’ll feel like, “Oh my god, I’m getting it too.”

So a regular exam visit, filling out the questionnaire, “Oh, how many cigarettes do you smoke?” I was stuck on that one. I remember not being real about it. I said, “No.” I said, “You know what? I’m not going to lie. Yes, I do. I started.” Sure enough, I get sent to, when they examine your chest or whatever, then it says, “Oh, something doesn’t look right. Let me rush this over to the doctor and see what recommendations are.” I’m like, “Here we go again.”

And then it was eating me up. I couldn’t sleep. I was worse. I was like, “Okay, I’m not going to smoke.” So what did I do? I pick up another habit, drinking. To numb it. So I couldn’t handle it. So the second time around, I stopped going because I said, “I’m going to change my insurance.” Because I was always giving everything an excuse, and I was already planning things, and I was putting more stuff in my head than it wasn’t. And so then when I went back again, I don’t know, it was like… Oh, then the other exam was, it wasn’t clear enough. We got to get another test.

So I never really went through it, and I never knew if it was or wasn’t. And I’m still to this day, have to, this is years ago, now that I’m back with Kaiser, because they’ve changed a little bit, and my plans were limited on insurance, I’m clear. It’s like all of a sudden. So it’s like, oh, it’s because the last test wasn’t very clear. So that’s going to mess me up in my mind. And I really, I was so pissed off about it. I had to cool off and email all the doctors. I said, “You guys know what you put me through?” Not even Xanax can calm me down for this.

So that made me think about everything, about question everything. Even getting a pap smear, “Oh, it’s abnormal.” So when I think abnormal, I’m thinking, oh my god, that’s the end of the world. It’s like, oh, I don’t want to… don’t sugar coat it and say, “Oh, so-and-so got better,” or no, I don’t want to go through another BS. So for me, it’s like I tell my doctor and she gets mad. I say, “I’d rather not know, how’s that? Unless I’m really, really sick.” Then I’ll know when I know. So then I wondered to myself too, how many of the people have been diagnosed, gone through the treatments, only to know that it’s not there and people don’t talk about them?

VIVO: So you had the imaging done, they sent you back, then you just didn’t go back in general, and then you went back a couple years later?

Interviewee: Yeah, I got a second opinion. And the second opinion was, “Oh yeah, we saw something.” And then they decided, “Oh, we’re going to do it again because it’s not very clear.” It’s like, “Yes, no, yes, no, yes, no.” And then so if I would’ve stuck with the original person, I mean, I think a lot, if I would’ve gone with the original diagnosis, if I would’ve gone through their treatments or whatever plan, I believe that that would’ve killed me more, with the medication and the whatever treatments without having a second opinion.

And my dad didn’t get a second opinion. It so happened that he said, “Okay, I’m going with this one. I don’t feel like I’m having any symptoms, but I’ll take your word,” because he trusts the doctors, but he did not trust whatever they were going to plan for him. So it makes me wonder when I see people with diagnosis, do they really have it or was it an error or whatever it was? Did they get a second opinion?

VIVO: When you were taking care of your dad, you watched it get worse and have an effect on his body. What was the worst part of it for you?

Interviewee: I was very new at this. So what I knew now, I mean, I was like, I had to learn how to stay away from the internet. Because the internet, it’s like you say stomach problem and then boom, it gives you a whole bunch of crap. So I had seen him already get… It went so fast without the medication, without anything that it was like there were no other choices. There were no other options. And I was there all the time with him.

And I will say something, that that made me become more of an advocate, because I would see how people were getting treated in there.¬†People, when my dad was going through the colon cancer, they had them in the MRI thing in the machine. And I overheard, never forget this, a lady when somebody would pass by and she would say, “God dammit, I told this man not to move.” And so she’s in this and she can’t hear him. And I see my dad, skinny little legs hanging around there, and as somebody’s passing by, she goes, “Oh, hello.” Changing her voice. I got in there, I said, “Hey, you know what? They’re hiring at Walmart. Go get a job at Walmart. You’re not supposed to be here.” Oh, I went crazy. I was so mad. I said, “Go ahead, call security.”

And that’s made me think. I go, “If that’s how you’re treating him, how are you treating everybody else?” So that made me more of an advocate. So it kept my eyes really open and like, “Oh, he’s fine here.” “Oh, no, he’s not. It’s okay. I insist I stay here now.” It made me more like an advocate to see how things are. They’re already going through stuff. He can’t move. So how do you tell him not to move? And I made it very clear and I was standing there to make them uncomfortable.

And it was out of my comfort zone, but I had to be, because all these things were adding up, adding up, pissing me off. And I learned how to be more of an advocate because they treat people like numbers. If anything, I learned everything, is how to be… I’ll be their Karen, I don’t care, I’ll take it, but if it’s for the sake of somebody’s health, anybody’s health. And then I started becoming more of an advocate for myself and for everybody else, but mainly for everybody else.

But the treatments were, I saw eating more, it was like he was gaining weight, but it was fake weight. After radiation, he didn’t lose his hair, but it didn’t seem… he went from thin to blown up, but it didn’t seem… it was like an artificial, I call it air. And then so my dad was not afraid of death, that man, I give him credit, didn’t shed a tear. He goes, “You know what I feel like doing?” He would tell me what he was feeling like doing. “I feel like smoking a joint. I haven’t done that since the seventies.”

And that gave him a little bit of longevity. And so I’m not against that at all. And so he had fun at the end. He goes, “Okay, if I’m dying. You know what, if I want to see strippers, I want to see strippers. If I want to see this, I’m going to see this.” But the medication definitely, it wasn’t very… That’s why I always say I don’t want to know because it’s like it’s more stressful on the family than on him.

VIVO: What kind of medication was he taking? Was he going to the hospital to get infusions and shots ? Was he taking pills?

Interviewee: I remember the radiation because of the stupid little bell that they did and then the chemo. And then he never got to… it was very short, the chemo. It was pain medication for the thing, and then the last week it was hospice. So we never got to a full, because it went so fast. I mean, we were so used to the routine of getting him… We knew he was going to go, but as a caregiver or as a family member, you’re used to taking care of somebody, going through the motions, and then coming back home. You still think somehow or staying at a hospital or rehab place for weeks. But you still have that hope that they’re going to come back. That wasn’t the case when he was at the hospice.

Chemo now is from pill medications. They don’t give you how I imagined it, but it was quite a lot of pills. But how can you take a lot of pills with no food in your mouth? So it was like, the dry mouth he had and the blisters he had on his mouth.

But physically seeing the medication killing him faster than what it was. And it’s like I’m thinking, I always thought he should have gotten a second opinion. But the symptoms before the diagnosis were already there. We already knew that it was something serious. He would go to the bathroom, bloody stool, not a little bit, a lot, always complaining about, “Oh, my stomach hurts.” And he was damned if he had a salad, damned if he didn’t.

So for a while we thought, but it was within months that he got worse. And he would go to the doctor, but some doctors… I never went with him to the consultations, but maybe they told him something that we didn’t know? Because he always kept his appointments, always. And he was always upfront about, “Oh, there’s some salespeople trying to sell you some of their drugs.” But he was very alert. But it’s when I think about cancer and I think about all those, I think about pharmaceutical companies. It’s like they… At least give us more options, work with us instead of, “This is what you got to do.”

VIVO: What would help you trust it? What would make you think that the drug was actually going to help and work? What would make you not feel so skeptical of it?

Interviewee: Having second opinon… What’s that place? City of Hope as a great example, how they work with you. That’s the whole plan. How the whole oncology department is… we only got to see them less than a week before he got transferred. They work with you. And a lot of stuff is like, okay, this is coming up, this is something that hasn’t been out there yet. The trial stuff. And they’re realistic with you. Some doctors don’t have bad manners, but you get a doctor that’s oncology and then always in a rush, so they go hand in hand. Because we all know deep down pharmaceutical companies are the ones.

If they were more open about like, hey… I think this is a start, telling a doctor, “You know my dad smokes cannabis for that.” “Oh, that’s bad. That’s bad.” Really? Is it? If they were to at least agree with us on that, I mean then, okay. So it’s at least work with us.

So we only went with one doctor that was his favorite doctor, and he said, “You know what? Let him do whatever he wants to do.” That made us trust him more. But the medication is… he doesn’t know, the doctors don’t know, the pharmacists are the ones going to know what goes into your body and what doesn’t. So I don’t think they’re on the same page.

VIVO: You said you weren’t a smoker, but you started smoking, and then you said you were smoking a pack a day. I’m curious about that. So you never were a smoker and then all of a sudden you did. Can you tell me a little bit about that?

Interviewee: I hate itm was having a a head buzz, how they call it. So after a while, I wasn’t getting that little head buzz, but I was looking for it. I think it’s the same way how they say with drugs. So I wasn’t getting that feeling. I remember the first time there was a random guy, and I stopped the car because I was so overwhelmed. And I asked the guy, “Do you mind if I…” And he lit up my cigarette, I didn’t even know how to suck it. And then I didn’t know. But then I remember feeling my brain fog going away or feeling a little buzz, and it was a pleasant buzz. And I said, “Oh, this is not bad.” But I hated the taste of it. I still hate the taste of it, the smell of it.

So then of course I knew about ultra. Then I started learning about, oh, so I started experimenting. Damn, expensive-ass cigarettes, $10 or whatever. By the time you knew it, I have to have a cigarette, but I don’t know what kind I want. So then I said, someone said, that’s a smoker, “Oh, you should try ultra lights.” Okay, I’ll try ultra lights. I wanted to medicate myself.

And again, I think it was more like in a sense, a challenge. Oh really? Lung cancer? Type of thing. I mean, it’s so stupid. I’m thinking, why would I do that to myself, thinking here, stressing about this, but then here I am. But at that moment, I wasn’t thinking. It so happened that I was there and obviously I can’t drink and drive because I have my dad and the time came where there was a guy standing next to me at a break having a cigarette. And so I wanted to get that same, but I wasn’t. So my body was already used to it. And so then by the time, oh, maybe I need another cigarette, light another cigarette.

And in my mind I was thinking, oh god, I’m going to go… Who knows? I don’t want to get realistic until I was like, shit, wait, now I’m the one going to be the one that ends up being sick. You know what I mean? And I was manifesting it or something. I don’t want it, but then I kept thinking about it every day. I go, “I’m going to die from lung cancer anyway. And so might as well freaking smoke.” Because he didn’t smoke. How the hell did he get it, supposedly? Right? Okay. So sure enough. So it’s like I was expecting it. So it was like, okay, so I’m fine. Might as well eat this because guess what, I’m going to freaking die anyway. And I had my baby at that time so it was crazy.

VIVO: And then you quit because of the imaging that you got, or was it before that?

Interviewee: It was weird. I don’t know. Honestly, I don’t know. I think it was because it was expensive, and then I kind of slowly was like, “Eh.” I call it a phase. So then I picked up on alcohol because I’m like, “Okay, I don’t smoke anymore but now… The little glass of wine became a whole bottle of wine.” But I was self-medicating myself until I got mental help or whatever. Then I realized, “Okay, oh, that makes sense. Okay.” So, gotcha. Now I got to stay away from these drugs to take that drug. Got it. It’s like, how’s that going to get me to jail? So you think I should take Xanax? Gotcha. All right. A controlled substance. All right, I’m done with that.

Participant Profile

• Female caregiver to father with cancer
• Located in Los Angeles, California (Highland Park area)
• 49 years old
• Self-identified as spiritual, less goal-oriented person
• Prior experience with personal health scare
• Extensive experience as primary caregiver for father with lung and colon cancer
• Notable challenges: navigating healthcare system, advocating for proper care, managing personal stress
• Priorities: questioning medical treatments, seeking alternatives, advocating for patients