Captivate Podcast: Infusions, Lymphoma, Takotsubo, Oh My: Climbing the Mutual Caregiving Wall with Roselyn O’Brien Markowitz | EP024

after his first treatment, we had a calling to her, because the genetic reports were coming in, and I was doing a tremendous amount of research, in which I think a lot of caregivers have to because if you aren't the health proxy, the advocate, the researcher, the patient, can only handle so much. I'm keeping track of the meds. I'm researching the drugs. I'm keeping this notebook, updated the appointments, and trying to get resources for us to understand more what's going on. So the genetic report comes back, and from the research I did, I learned from the genetic report that he had 20% of his B cell lymphoma had other types of B cell lymphoma in it, which were not curable, but were manageable and treatable. So we we didn't get a call from the oncologist about this, so we contacted her, and she got back to us on a Saturday. Stan had her on speaker phone, and I'm asking her questions, and she's saying, Oh, I don't have the reports yet. We have to wait to see if there's double, triple hit. And I said, Well, I'm looking at the report, and we need an explanation about what this 20% is. Well, she kind of blew us off just like, well, it really didn't matter to her, because she would start this our chop, you know, regardless, and we'd had one treatment, so that evening, now, during the toxic people period, we can't even touch. He has to wear gloves. There's a lot of precautions. I'm sleeping upstairs. He's downstairs. We I can't even do his laundry, you know, he has to double wash everything. I mean, it's a lot of stuff. He can't be in the kitchen, you know, we can't use the same bathroom. Caregivers that are under the same roof. I mean, there's a lot of precautions so that, after we had that phone call that was on a Saturday and we got insufficient answers, we were both concerned and frustrated about that. So that night, I go to sleep, it's mid July, right? I go to sleep kind of and I wake up coughing in the night, and I'm coughing up blood clots, and so I go to the restroom, and I'm not feeling well, and I'm kind of confused and stuff. And I say to myself, Okay, well, maybe I just had, like drainage in my throat. I'm thinking of all these weird things. So I start to go back to bed, and then I thought, Wow, you better take your blood pressure in your pulse. Maybe something's wrong, so I take it, and my pressure is like 225, over 125, or something like that. I don't wake up, staying yet, and I retake it. I'm downstairs by this time, and I felt like not with it, really, but I take my. And pressure again, like pulse is like 151 60 again, and I know it's something more than afib. So I wake up Stan, and I said, I think that we've got a problem, and we better call the ambulance, because maybe I'm having a pulmonary embolism. I told him about the coffee, not then, and whatever. So we call the ambulance, and he follows the now this is during his get strong for treatment number two period. So the ambulance comes and they do the blood work on me and everything, and I'm having a cardiac event. My troponin level is in the seven hundreds, as opposed to under 12 or whatever, and I go on Heparin and all that stuff. So they schedule me for a catheterization the following day. Stan's able to come for that. And thankfully, my my normal cardiologist, my regular cardiologist, did that catheterization, and when I'm coming out of the anesthesia, he says, Good news, you didn't have any blockages and you didn't have a full blown heart attack, but you had Taco Sugo. I don't know what taco Sugo is. I, I had never heard of that, and he said, it's broken heart. It's broken heart syndrome. You have a stress cardiomyopathy. Okay, so I'm happy anesthesia, and I'm listening to this, and I'm hanging on to some words, no blockages. Okay, that's good. Pizza's not blocking my heart. That's good. And stress, and then the broken heart syndrome, which immediately takes me to, oh my god. I've always figured that that's what my grandparents had had, because they passed away so close to each other, and I'm thinking, Oh, my God, oh, geez, this isn't good. This isn't this isn't good. But fortunately, they revised my medicine, but my heart function went down to rather than 60 65% it was 45% so it caused a big change in heart function. But you can recover from it. You know, some people recover in a few weeks, some people recover in a few months. So I have a repeat echo coming up in December to see if that has been the case, and I think it has been. But it takes a while to gain your strength. So here I am in the hospital for a few days. I have the catheterization in the very following week, Stan has treatment number two, so I don't miss a beat. I get out of the hospital and I spend all day with him for his treatment, and then we are literally in the toxic period together, where we're taking turns doing food and drinks for the other I'm told I can't do stairs for three months, but yet that's where I sleep, and so I do the stairs anyway. And so the caregiving was, the caregiving was simultaneous for for a while, but it gets better, because through the hospitalization, I'd been complaining about weakness and fatigue for really long time, like a couple years, and my blood work showed low iron, whatever. So the primary doctor sent me to a hematologist who, in September, ordered two blood infusions, so I had to go to the same cancer centers stands going to for my infusions, and I wouldn't let him go with me, because, frankly, the cancer center isn't the most uplifting place to

go. No, it's not.

Roselyn O’Brien Markowitz: So I said to him, no, no, we spend enough time at the cancer center I can go. I had my infusions. So the infusions, I think, and I was told by the hematologist, I would feel better. Wow, I didn't. I was I came home from infusion number one and slept 17 and a half hours. I was out until just a few days before infusion two. Then they tell me, well, you'll feel better in two to four weeks after infusion two, which thankfully I have. So I'm dealing with the infusions, and we're going through stands treatment number three by this time, and three and four, I. And he had a PET scan in the middle of this that showed that his mass was responding to the chemo treatment. But no one tells us how much. So here I am. I have papers all out in front of me, all the measurements and centimeters and stuff, and I'm calculating the percentage of the progress of this and the new size of it. So I come away with, okay, it's 40% reduced. So the oncologist says to me, when we see here for visit five well, how do you know that calculation? Where did you get that? I said I did it myself. From the Reports, it was too I mean, I was good at math in school, but come on. I mean, you know, I'm not used to doing this right now. So long story made short, a lot of our things were simultaneous, and it seemed that I was just in time for his next treatment. You know, I had my stuff and and I was able, you know, we didn't miss a beat together through this. But the care, the the whole reason I'm telling this is, I think, a very big thing that doesn't maybe get enough attention for caregivers is monitoring for stress cardiomyopathy. Because when I was going through this, I thought, you know, I've heard friends and I worked for a lot of cancer organizations or with with them as clients, and I heard a lot of people complain about the fatigue, the inability to sleep, irregular heartbeat, not eating well, not caring about eating, a lot of things, but it always gets pushed to the side, Like, yeah, caregivers need a break, but they also need monitoring from their doctor. I mean, does any of this resonate with experiences you've had? Well,

yes, and I've done an awful lot of research on what is happening to caregivers globally, 1/3 of caregivers will likely die before the people they care for because they're suffering from a stress related illness such as heart disease, diabetes or hypertension, so everything you're saying and another third or so are also suffering from it, but maybe not dying before the person. So they don't do the research beyond that, but it's typically women, and since they know that women's heart attacks come on differently, I don't know why. That isn't just an immediate thing that would be challenged. You know, oh, out of step, it's so together,

Roselyn O’Brien Markowitz: it's so important. I think a lot of it is people think that, oh yes, of course, you're tired, you're doing this, you're doing that, but this is the kind of fatigue I've said to my friends. This is the kind of fatigue that you it's a wall that you come up against and you can't climb up the wall and and typically, I'm a high energy person. Oh, my God, I I would have to put, I mean, two, three things on my calendar, like, oh, Roz, just, just make this dinner. You'll have this dinner. Stan will have this dinner for the next two to three days. Laundry had to go on my list because joining laundry and doing all your other I mean, it's it's real. I

want to conclude today's episode by saying, Please, please educate yourself to avoid becoming a statistic. We spoke about how families need to step up a bit more to help the family caregivers preserve their well being. And it seems that this is an area that still needs a lot of work. Seems to me that families can do the best share giving of everyone. Here's a takeaway tip, if you're a caregiver, make sure your doctor monitors your heart. It's challenging to take care of yourself, but it's worse if you become a patient needing a caregiver too, while you're caregiving, please don't become your own biggest obstacle until next time, please drop a comment about your own share giving tip, put it in the comments. Stay well.