The Cancer Couple
A married couple, one a medical oncologist and the other a social worker share their experience as they navigate cancer after both being diagnosed within 4 months of each other.
The Cancer Couple
Joe's Story
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Welcome back to The Cancer Couple! Becca was diagnosed with node positive breast cancer in October 2025 and Joe (a now retired medical oncologist) with Stage 4 Mantle Cell lymphoma in February 2026.
In this episode, Joe tells us about how he came to find out that he has mantle cell lymphoma and more about his cancer ordeal (we like that term better than journey).
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All right, welcome back everyone to our next episode of The Cancer Couple. This is Joe.
SPEAKER_00And I'm Becca.
SPEAKER_02And glad to have you with us. So on our first real episode, which is the last one, we kind of went through Becca's story of her cancer to get us up to speed with what she's been going through, her cancer journey.
SPEAKER_00Or as my cousin, I like to do a shout out to my cousin Glenay, who suggested we call it an ordeal, as she gave us the definition that it's a difficult or challenging experience, which I would agree is a little bit more uh descriptive than journey.
SPEAKER_02Yep, yeah, I like that. Yeah, journey sounds like a really fun trip. It's not been quite that. Um so for this episode, we're gonna kind of like we did the last one and and go through the second cancer diagnosis, which was was mine. This is gonna be kind of a twisting and turning story with some self-inflicted mistakes by yours truly. Uh, but also just this way cancer is sometimes it's just kind of sneaky.
SPEAKER_00Um And we also wanted to mention that we hopefully have fixed our microphone technical difficulties with some new software so that I don't sound like I'm standing behind Joe in the distance, which is a little too on the nose for being married to a doctor who takes front stage a lot of times.
SPEAKER_02Yeah, yeah. Yeah, so hopefully, hopefully this won't sound a little bit better than the last one. So I'm gonna take us all the way back. Well, I had to kind of review the series of events because it's hard to remember. Uh, just because we've had so many things, but actually it goes all the way back to the fall of 2024. So I had just a regular fall visit with my doctor, you know, to check my cholesterol and I have type 2 diabetes, so check all that stuff. So, you know, he ran a bunch of labs. Um, and one of the labs he ran was a was a complete blood count, and it came back a little bit off. So I had uh a mild iron deficiency anemia, which I never had before. And then my platelets, you know, the blood cells that prevent us from bleeding were were low. You know, they've I've had sort of off and on slightly low platelets in the past that I've really never worried about, but uh it was around 80, which it's never been quite that low before. What's the normal that most people have? Yeah, technically normal is around 150 to 400. Um we really like to see it above 100 for sure. So 80 definitely falls in the not dangerous, but definitely not normal. So you wonder like what's going on with that.
SPEAKER_00And with some anemia, that means usually you're losing some blood somewhere.
SPEAKER_02Yep, well, there are different kinds of anemia, but um, I had uh low hemoglobin, so the red blood cells, but plus I had low iron. And so um that's I was honestly I was way more worried about that because in a man, especially, you know, women can have iron deficiency anemia because they have babies and they have natural blood loss. I mean, guys, unless you stabbed yourself, shouldn't be losing blood. And um, and and so iron is basically blood unless you're like getting none in your diet. And so so the usual cause of that is bleeding internally somewhere in the GI system. And so um, so actually, I saw one of my colleagues who's a hematologist, and he ran a bunch of blood work, including having our pathologist look at the blood cells under the microscope, and everything looked fine, and so um sent me for a scope. So I had a an upper endoscopy and a colonoscopy, and the upper endoscopy showed that my stomach kind of looked like hamburger, and biopsy showed I had uh an embraced.
SPEAKER_00Meaning that it was real red and irritated, and I think he said when he sent the scope down, if it would brush against the inside there, it would cause a little bit of bleeding because it was so raw down there.
SPEAKER_02Yeah, so I had a really bad gastritis. He didn't see an ulcer or anything, but clearly something was up with my stomach, and so it looked like that's probably where the bleeding was coming from. And so I had uh an infection called H. pylori. And so that's a bacteria, right?
SPEAKER_00That's not completely uncommon. I mean, it's it's actually pretty common.
SPEAKER_02Pretty common. It's the most common cause of ulcers, actually, and um and can also cause some kinds of cancer. So it's actually a cause of stomach cancer and stomach lymphoma. Uh, but fortunately they didn't see any sign of cancer, the biopsy came back negative. You know, so you kind of look for unifying diagnoses in medicine, and so we it'd be nice to have something that explains both the low platelets and the iron deficiency. And we kind of thought we had it, um, because H. pylori also causes a blood disorder called ITP, which is sort of an autoimmune attack of the platelets that can cause low platelets, and so we're like mystery solved, you know, and so um so I didn't really worry about it, you know. I was supposed to take iron, which didn't uh do such a good job of that. I think I took about three iron pills in total. Just terrible patient. And then um, and so then I had to take a whole bunch of antibiotics, and it's it's kind of a hassle, you have to take them four times a day. And I am not good at taking medicine, and I took it maybe three times a day.
SPEAKER_00And so then you have to do a second course because it didn't get rid of it. Yeah. Because you weren't adherent to the antibiotics.
SPEAKER_02Yeah, so you're supposed to go back. Um, they actually do a bl uh a breath test. You breathe into, I don't know exactly how they do this, but you breathe into uh this thing after you drink some stuff and they can measure uh some sort of gas that the bacteria makes, apparently. Um so they do that to make sure that they cleared it. And uh, I don't know, I think I went back to that probably a couple months later and and I flogged, so I still had the bacteria. So then um wasn't too happy about that. So then I went back, called my primary care doctor, he prescribed another course of slightly different antibiotics, and I I was really strict because I did not want to have to deal with that again about taking it. And so then then I just sort of assumed it was all cleared up, and then I did do a second H. pylori test, which did confirm it was negative.
SPEAKER_00Um so honestly, I kind of didn't really worry about it. Um because you felt the H. pylori just uh basically explained why you were having some abnormal labs for your blood.
SPEAKER_02Yeah, yeah. So I was supposed to, I think I was supposed to probably go back and get my blood counts checked again, um, which I don't know, thinks that busy, you know. Uh so so my mom actually was diagnosed with metastatic lung cancer last summer. That's a whole nother story. And then Becca, of course, was diagnosed with breast cancer, and so I don't know. I mean, we had so much going on, and like I just never got around to scheduling it. And so um, so so we kind of we knew I had some blood problems, thought it was caused by this bacteria in my stomach, and really didn't even think about it again. And so, um, so really fast forward now to February of this year, and this is kind of a stupid story, you know. So it starts out with um, so my mom uh was diagnosed with lung cancer, and uh we moved her down uh near us in shock of being goddess on college and all that kind of stuff. And so I always preached my patients how important exercise is when you're going through cancer treatment, and so trying to be a good son, I got her a membership at Planet Fitness, which was right by your house. And then I joined it too. So I took her to Planet Fitness to, you know, check it out, do a workout. And uh so then I, you know, I'd never been there before. You know, I I have all these tonal things at home, so I usually work out at home. I don't really go to the gym very much.
SPEAKER_00And we should preface this story with Joe is notorious for being a zero or a hundred percent person. Moderation is just not a word in his vocabulary, yeah, and it never has been. I expect it never will be. So we'll just say that before this story starts.
SPEAKER_02Yeah, judgment is not something I'm always good at, but so so you know, um, so I'm checking out some of the equipment and and they have like this leg press machine. Apparently, it's called a hack squat machine, which I didn't realize at the time, is is a pretty tough workout for your quads. And so um, you know, I feel like I'm in decent shape, and so before I get on the machine, I throw a couple plates on it because I figure it's gonna be pretty light. And what I didn't realize is the machine, even without any weights, is super heavy. So I got on it and like, holy cow, this is super heavy.
SPEAKER_00And so when he was telling me about this, I said, So then did you take the plates off and just lift with whatever the machine has that's really heavy already? And he said, Oh no, I did 10 reps with it on there, which I thought was crazy.
SPEAKER_02Yeah, that was that was in retrospect probably not a good idea. And then I so I did a couple sets of that because I didn't want to look weak in the gym. And so, so I don't know if if you've ever like done a leg workout or I don't know, um, like exercise if you haven't done it in a while. I mean, my legs were trashed. I mean, my quads were so sore and weak. And so, um, so then went to bed and then I woke up like on the floor. Uh, and apparently I'd gotten up, probably go to the bathroom and had a fall, which I never do. And didn't they have like a yeah?
SPEAKER_00It looked like you had a little bit of a carpet, you know, rug burn or whatever above your eyebrow. So you must have fallen into the carpet and scraped your face a little bit.
SPEAKER_02Yeah, so so that was weird. Um, but I didn't really feel like I heard anything, and so I, you know, I just kind of went back to bed. Um, but then the next morning when I woke up, I had just this kind of pretty horrendous pain along the back of my scalp. And so going back, I don't know, 10 or 15 years ago, um, I had like I had these really painful zits in the back of my head, and I I would touch them, I was like super sore. And I was in clinic one day and I asked one of my my partners, what is with these pimples in the back of my head? Because I couldn't see them. And he looks at it and he's like, idiot, you have shingles. So like, oh my god, of course I have shingles. And so uh, but you know, I'd had it for several days, and so um, so I'd had shingles in the exact same spot. It really hurt, and but but fortunately completely went away. And so it felt exactly the same as my previous shingles. You know, I had this bad nerve pain, no skin lesions this time, but I thought uh they'd probably come and I can't see them.
SPEAKER_00Right. And you did you you had the shingles shot, right? I had the shingles vaccine, yeah.
SPEAKER_02But after you had the initial shingles, so but I was like, well, it's obviously shingles. So I went to urgent care the next morning and basically just told the urgent care doctor, I have shingles, I just need some bell cyclo here.
SPEAKER_00So this is okay. This is the danger of a doctor doctoring himself.
SPEAKER_02I know, it's a terrible idea, you know. Um so so she's like, well, I don't see anything, but yeah, sometimes the symptoms start before the rash.
SPEAKER_00So And that was the case your cousin had just had shingles and had pain for several days before the rash showed up, and that was hard to figure out at the time for him what was going on. So we thought maybe that was the same course for this.
SPEAKER_02Yeah, so so it does happen sometimes. So uh so I'm like, I'm gonna get started on antiviral medicine right away. So I got the prescription. Uh, but then you know, the pain was like getting worse, but I didn't have any rash, and so so this was um we'll we'll have an episode about this sometime. So Beck and I have both extensively used artificial intelligence during this whole thing, and I I'm not ashamed to admit that uh that I I actually use it a lot. So um, as a doctor, we have access to something called open evidence. So you actually have to have like a NPI. So you have to prove that you're a practitioner, nurse practitioner, or physician, or whatever. Um, and so it's supposed to be a little bit more accurate and gives medical citations, and so so I put my symptoms into open evidence, and it said, yeah, you don't have shingles, you have something called occipital neuralgia, which honestly I didn't even know what that was. I had to look it up. And so then when I read about it, I'm like, oh my god, that's what I have. It's caused often when you have a fall and hit your head, and so um, and the pain was it was really terrible. I mean, yeah, you were really miserable. Yeah, I mean, I I my heart goes up for anyone dealing with like chronic nerve pain because like nothing works for it. And so, from what I read, um, the best treatment is to get usually a steroid injection. And if that doesn't work, then sometimes they have to even do surgery. But the steroid injections generally work pretty well. So I schedule an appointment to go in and see uh one of my uh PCP's partners. I'm like, Brian, I need a referral to a neurologist just so I can get this thing taken care of. And you know, he's examining means like, well, yeah, for sure, this is classic octocipital neuralgia.
SPEAKER_00And this was after you took me, I think, to get my drains removed by the plastic surgeon, dropped me off at physical therapy for my possible lymphedema, and then you went to your appointment.
SPEAKER_02Oh, remember that, yeah. So this is the beginning of us trying to like organize our crazy medical appointments because it got it got pretty nuts. So um, so then he looked at my chart and said, Oh, you're due for some labs that your primary care doctor had ordered that you were supposed to have done like two months ago. And so then, like, you know, like my lipids and whatever. Um, and then I'm like, oh, by the way, I'm way overdue to get a blood count. Can you just add that on? He's like, sure, no problem. So then my blood count came back, and uh, and it was pretty abnormal. So I had um lower platelets down into the 60s, which they'd never been that low before. My anemia was worse, my hemoglobin was down to about 12, but but um the most concerning thing, and honestly, I didn't even catch this at first, was that my lymphocyte count, which is one of the white blood cells, had was twice what it should be. And so, you know, that can happen if you like got an infection or something, but um, but that's a pretty concerning sign because there are some types of blood cancers that can show up like that too. So then I get the chart message from him, and uh, he's like, you know, you better get back and see the hematologist. I'm gonna run some other blood tests, we'll have the pathologist look under the microscope. But honestly, at this point, I'm like, I gotta get this neurology thing.
SPEAKER_00Yeah, that was really it was so in it, it was interfering with everything. I had to drive you to work the last day you went to work because I knew you wouldn't have the energy to see patients all day and drive, you know, 35 minutes to work and back. Yeah. Um, it just was it was really zapping your energy.
SPEAKER_02Yeah, I mean, I couldn't sleep, and so uh so we saw a neurologist, they said we can get you in for an injection with one of our PAs in June. Well, that's not gonna work. Um uh so we're dealing with a neurologia. I got this abnormal blood work that honestly I'm not too worried about at that point. I thought it was gonna be probably something called chronic lymphocytic leukemia, which sounds really bad, but is, I mean, generally a kind of a no big deal. Don't even just have to treat it, kind of a blood problem. But then I saw the pathologist said there are abnormal lymphocytes circulating and it does not look like chronic lymphocytic leukemia, it looks more like lymphoma. So that's when I thought, oh crap, you know, that's that's not on my radar. Um and so so there are different kinds of lymphoma that can show up in the blood. Most of them are are kind of slow growing. So I still wasn't too worried about it. But then some of the protein tests started to come back that they run on the cells, and they said that it looks most likely to be mantle cell lymphoma.
SPEAKER_00Yeah, and I remember we were in the kitchen after you had had your blood work and you were gonna go take a look at it on the computer. And before you did, I said, What are the most likely things that are causing this? And you gave me a couple different things that again sounded kind of scary, like the chronic lymphocyte leukemia or whatever it was, and but you said, but often they don't even have to treat it, it you can just live with it for a long time. So I thought, okay, well, what what else could it be? And you said, Well, it could be a lymphoma, but we really don't want that. And uh then you came back from looking at the computer and you looked fairly concerned.
SPEAKER_02Yeah, yeah. Yeah, so we'll talk we'll talk a little bit about about mantle cell lymphoma. And actually, I've um I have treated in in the past micro, although it's been a long time, but um, but sort of of the things it could be that was at the bottom of the list of things I wanted, just because it has a pretty bad reputation as a hard-to-reat kind of cancer. So we got in, shout out to Reyes Radiology. Um, I actually made an appointment myself to get this thing injected. I've um the spine surgeons that I've worked with over the years always say those guys are the best for doing like spine injections. And uh, I had just a fantastic doc who like talked me through exactly what we were gonna do, and um, it hurts a lot to have a needle stuck into your neck, but um, but it really helped. You know, the pain didn't go completely away, but it was a lot better. I was able to sleep and that kind of thing. So once that was taken care of, then I could sort of deal with this new turn of events in my blood work. So um, so again, I talked to uh to my colleague Dr. Torgesson um uh that we now have a mantle cell lymphoma diagnosis. And so there is a specific genetic alteration in a gene called CCND1 that is classic for mantle cell, and so they confirmed from my blood work that that these cells did have that mutation, so like confirmed for sure it's mall cell lymphoma. So mall cell lymphoma, if you Google it, um, which our daughter did later order not to, you know, when I was in training, like, you know, uh I guess in the last century, it's a long time ago, male cell lymphoma was always thought of as as kind of the worst lymphoma. Um, and so the reason for that, you know, we put lymphoma into two kinds of buckets. So lymphoma is cancer of um of blood cells called lymphocytes. So lymphocytes live in the blood, they're in your lymph nodes, they're kind of all over the place. And there are two kinds of lymphocytes, B cells and T cells. And so B cell lymphomas are far and away the most common kind, like 90% are. But then the other way we think about them is whether they're fast growing or slow growing. So aggressive or what we call indolent, which is slow growing. Um, so aggressive sounds bad, but the good thing about aggressive lymphomas is that we generally have a pretty high cure rate. So the treatment can be pretty tough, but but most people these days are actually cured of it. Slow growing lymphomas are generally not curable with standard treatments, although I think that's maybe starting to change with some newer treatments. Um but because they're slow growing, even if you can't get rid of them, you know, usually you can live for a long, long time. Yeah, and a lot of times you don't even have to treat them if they're not causing symptoms. So mantle cell has always been thought of as the worst of both worlds, and so they can be more aggressive like an aggressive lymphoma, so that's so they're they're kind of faster growing, but they're incurable uh like a slow-growing lymphoma. So that's that's what I've always thought about with mantle cell lymphoma. And so if you look at the data, and I think this is still like if you do a Google search, what you'll find the average survival with treatment is five years, so that's not awesome.
SPEAKER_00Yeah, that was that was pretty hard that when you got the confirmation that it was Mantle cell, because it was one you really did not want to have, because historically it's not been a very long survival rate. Yeah, yeah.
SPEAKER_02And then the other thing that's hard about it is historically it's treated like an aggressive lymphoma. Um, and so that is with with generally pretty hardcore chemo, um, and then usually a stem cell transplant. At least, at least that's how I remember mental being treated.
SPEAKER_00Um so So I have a question for you. So when you well, there are two points. One, the suspected mantle cell on the when you looked at the computer, and then you got the confirmation, I think, two days later. Yeah. So what was your initial reaction to either of those events?
SPEAKER_02Uh, you know, um and you know this, you know, um I've I I've dealt with cancer my whole life and I've seen I mean lots of good outcomes, but some pretty sad ones. The the thing that's always saddest to me uh is people who get diagnosed with a terminal cancer right before they retire. I've just that's always been a kick in the teeth, and that's always been my honestly my biggest fear. I'm not afraid to die, but you know, getting diagnosed with a terminal illness right before you're gonna retire is just like worried about that. Yeah. So so my first thought was like, seriously, this is exactly the scenario, you know, that I didn't want. Also, kind of like w, you know, we're dealing with your cancer, my mom's cancer. So she was diagnosed last last August, I think.
SPEAKER_00So less than year ago. She had it in 2020, had surgery, and then it was gone for five years and then came back this summer.
SPEAKER_02Diagnosed with a static recurrence last summer. So, yeah, so we're dealing with that. So, so part of it was like, oh my god, how are we like we just don't have the bandwidth to deal with one more, you know, illness, especially something like this? So um, so I would say I had a very brief pity party, um, but not too much, you know.
SPEAKER_00Do you feel like you were do you feel like you were um processing it more as a patient or as a doctor? Like were you did you drop into like physician logical thinking to get through it more?
SPEAKER_02I think I did pretty quickly. I think um once, yeah, I was I was really I mean it's Mannel cell, like when I went through training in the patients I took care of with Mannel Cell, and and like this is back in the 1990s, you know, when I was in training. This is a long, long time ago. Uh I just remember I, you know, they all died. It was just terrible cancer. And so, um and I know in and so I have not a mantle cell lymphoma. Expert, you know, about oncologists, but I, you know, and we'll sort of talk about that, but I definitely am not an expert in a manal cell. Um, and so yeah, so I felt really sad. Um, and then I felt really bad because you know, now you gotta deal with me having to deal with this, and I'm supposed to I'm supposed to care if you and so um, but then yeah, I kind of went into doctor, like gotta research this mode, you know, briefly. So um, you know, obviously I know uh a lot of people in the oncology community. Um, and so you know, I a lot of a few people um know that I was diagnosed. And then uh so we live an hour and a half from the Mayo Clinic. We have excellent health care in the Twin Cities, and everyone I told is like, well, are you gonna go to Mayo? Um and you know, I see this in my patients too. There's there's and I I totally get it, you know, it's sometimes I tell people you just need to get your case blessed by Mayo.
SPEAKER_00Well, it doesn't it doesn't hurt to get all the information and then just feel like you've made the best decision you can from your situation.
SPEAKER_02Yep, for sure. So, so um, you know, and and it's a pretty uncommon uh cancer. So, so just to put numbers in perspective, breast cancer is very common, so 250,000 new breast cancers a year in the United States. Non-hodgens lymphoma is actually pretty common too, 80,000 a year. So not quite as common as breast cancer, but you know, it's not super rare. Um lymphoma is about 4,000 a year in the US and about 40 in Minnesota per year. So, so it's not like super rare, but pretty uncommon.
SPEAKER_00Not likely.
SPEAKER_02Yeah, yeah, yeah. Definitely drew the short draw on that one. So um, yeah, so when I got the diagnosis, uh I uh reached out to a friend of mine down Rochester and like, dude, who's good at Matle cell? You know, down at Mayo. And so he reached out to one of his uh colleagues who's their Matle cell expert. And actually he he this is one of the advantages of of being an oncologist. I I recognize um that we have way a ton of advantages that not everybody has. And this was one of them is you know, it's not so easy, probably, for you to just call and try to get an appointment in Mayo. Right. Um and so uh so I was able to, in some sense, kind of move to the front of the line, you know, which which I recognize is not everybody has that. So um so I got an email from um from Dr. Wong, uh, who gave us permission to use his name.
SPEAKER_00We asked him at the last visit.
SPEAKER_02And so uh so he emailed emailed me, I told him just a little bit about my case, and he said, you know, we've got a clinical trial literally promising that we're gonna be opening in a couple weeks. And so um, so I scheduled an appointment. So this was um kind of late February, and so I had an appointment in March, on March 10th, uh, because they didn't have the open the study open yet. So in the meantime, you know, you got to do all kinds of tests when you get this, and so uh kind of different than the tests you went through. So for me, I have to have a bone marrow biopsy because since these are lead cancers, you know, we want to know if it's in the bone marrow or not, and then how was that having a bone marrow biopsy? It was um, so uh I think I can see I can, you know, I think a lot of people know I work at Abbott Northwestern. Um it was done at Abbott, it was fantastic, actually. You know, I've ordered a ton of them before, and they sound terrible, you know, you're sticking a needle in the back of your of your hip. But um we do them all under anesthesia at Abbott, and it was like the easiest thing in the world, you know. Um, I went to sleep, woke up. I it didn't like I couldn't even tell I had it done. It didn't hurt at all.
SPEAKER_00Yeah, yeah. Because it wasn't always done under anesthesia in the old days, right?
SPEAKER_02Oh, in the old days.
SPEAKER_00Yeah.
SPEAKER_02I remember when I used to do my own bull marrows. I mean, basically we would tell people, ah, you know, it's gonna hurt a little bit.
SPEAKER_00There's a leather strap to bite down on.
SPEAKER_02Yeah, we can get bullets to bite on. So yeah, we would do them in the office, kind of a little Novicaine shot. You know, so it's and sometimes we were fine, and sometimes people were screaming. I look back, I look back, I'm like, oh my god, I can't believe we did that. Yeah. So yeah, so it was actually, it was fine. So I had to do that, and then I had to do a PET scan, you know, and then um the chemotherapy that's usually used can have some significant side effects like heart damage, that kind of stuff. So I had to have an echocardiogram done.
SPEAKER_00When you did the PET scan, what were they looking for and what did they find?
SPEAKER_02Yeah, so so PET scans basically inject you with uh radioactive sugar, and so the idea is cancer cells eat more sugar than regular cells, so they kind of light up.
SPEAKER_00So Which does not necessarily translate into stay away from sugar in your diet. That's what I meant.
SPEAKER_02Yeah, yeah. So the whole don't eat sugar because your cancer will grow. I mean, that that's not what that means, but it is true that cancer cells they just use more energy, and so so PET scans are the most accurate test to sort of to see where the cancer was. So really we were looking, is it in the lymph nodes, is it in any other organs? Um, and so we got the bone results back. So I had the bone marrow first actually, and the results for that came back, and um that showed that 35% of my bone marrow was replaced by cancer, so uh I wasn't super happy about that, but not super surprised either. I mean, obviously we know it was in my blood, so we assume there was probably some of my bone marrow. Um, and then when we got the PET scan. Well, let me so at this point I started to get sick, actually. You know, I I hadn't really I think back sometimes about like should I have recognized something was going on?
SPEAKER_00Um, and I don't know, like I felt kind of tired a lot, but yeah, you were going to bed like a lot earlier, but you also would get up at 5 or some a.m. to go to work.
SPEAKER_02Right.
SPEAKER_00Um, and so and sometimes when your plate's really full at work in the past, you would have those stints where you like just need to sleep a lot because there's just a high demand going on physically, mentally with oncology. So yeah, we did kind of tease you about oh, it's nine o'clock, dad's gotta get in bed now, you know. But but also, you know, you were in your late 50s and maybe. Yeah, come on, give me a break. So it wasn't super obvious necessarily.
SPEAKER_02Yeah, and then um, and then yeah, you know, uh, I mean, you know how it is. I was not exercising, you know, I'm always being myself about like, oh god, I should exercise more, and I was not being very consistent. I felt like I was getting a little bit of a gut, and I thought just because I hadn't been working out very much, in retrospect, I should recognize that that was maybe something that was going on since I wasn't losing, uh since I wasn't gaining weight. And so um, so my PET scan showed that my spleen was was humongous. So the spleen, you know, sits left side of your belly, it should stop at about the rib cage. Mine extended all the way actually down into my pelvis. And so about I think it was about a week before I had the PET scan, I started having trouble eating. I think were we at Brugger's that was that when I came home and just started vomiting like crazy.
SPEAKER_00Yeah, that was the day that you had the um you got the shot in your head for the example neuralgia, and we came home, we had picked up a bagel, and then you you ate some of it, and then all of a sudden you just went in the bathroom and threw up. It's like you couldn't tolerate food.
SPEAKER_02Yeah. Yeah, so I'm like, well, that's weird. Uh so we we actually called Raya's and like, is this normal after injection? They're like, yeah, that's not normal. So but but um and then I I started feeling nauseous sometimes after I would eat. And so then once we got the PET scan, you know, it was pretty obvious because my stomach was completely smushed by my spleen. Yeah.
SPEAKER_00So um so it was only in the spleen and the bone marrow. Sometimes lymphoma can be in other areas, but you only have those two areas show up on the PET stand.
SPEAKER_02And that's really important. So um uh, well, we'll talk about sort of like what I've learned about this, but but at that point, you know, I was talking to my oncologist at Abbott, and once we got those test results back, and especially with the trouble I was having eating, um, he said, you know, we really should get going on treatment. And so this was end of February, and then I was, I think it was a Friday actually when I got my PET scan results back. And then he scheduled me to be admitted that next Tuesday, which was March 3rd, and we were gonna put me in the hospital to start chemotherapy sort of right away. And so the the standard, I would say the standard of care, or whatever, or you know, I would say the most accepted treatment, um, has changed uh quite a bit based on a study that was published a few years ago that was done in Europe where they looked at, you know, uh sort of the approach of intensive chemotherapy. So everybody got intensive chemotherapy, but then they also added a newer type of treatment, which is a pill that targets a protein that is important for lymphoma cells to grow. And then they looked at whether or not a stem cell transplant was necessary, and what that study showed was that adding this pill was called a brute nib, really improved the um remission rate. We don't have like long-term follow-up or anything, the study is relatively new, um, but it seemed like people who got the pill were relapsing less at three years than people who didn't get the pill. And so um so my doctor recommended you know, this is you're young and healthy. I love it that I've considered young and healthy, um, and so we should treat this aggressively. And from everything that I had read, that that totally made sense. Um but, you know, one of the downsides is the standard treatment has two drugs that cause nerve damage, and although this neurologia pain was better, it wasn't gone yet, it was still hurting. And I was really nervous about getting permanent nerve damage from the chemotherapy.
SPEAKER_00Because that's something that you've seen before with patients who've gotten a couple of these particular drugs as part of their chemotherapy.
SPEAKER_02Yeah, so if anybody is listening that I've treated with drugs that have caused nerve damage, my sincere apologies. Because yeah, that's one of the worst um side effects that can be permanent from chemotherapy, and it really, you know, alters your quality of life, and sometimes it doesn't go away. So I was pretty nervous about that. And then, you know, um I love Abbott, but I felt like I was in such a fishbowl. Like every time I showed up for a test, I just felt like, you know, everybody knows me. They're like, what's he doing here? And the idea, the thought of like having treatment in the same infusion center where all my patients are, just I don't know.
SPEAKER_00Uh did it just it felt did it feel awkward to be in a vulnerable state instead of being viewed as the doctor?
SPEAKER_02Well, I I just sort of felt like I'd have to I don't know, I couldn't probably I couldn't just like be myself uh because I just felt like I just felt like everybody's looking at me all the time. So but um but I also I you know when you when you know you got cancer going on, I mean you can you know this because your treatment's been so delayed. Um you kind of want to get going.
SPEAKER_00And so still waiting to get going and waiting for my estrogen level to be checked before I start my uh medicine.
SPEAKER_02I know, right, yeah. So yeah, so so so I so anyway, so I reach I reach out to Dr. Wong because my appointment with him for my second opinion was the day after I was gonna start treating or the week after I was gonna start treatment, so that wasn't gonna work. And so I said, Thank you for you know trying to get me in, but I I think we're gonna go ahead and just get treatment started. So then he got back to me right away and said, So again, it's gonna be admitted on March 3rd. He said, Can you come see me the morning of March 2nd? Because I think we can maybe get this trial up and running. So um, so I said, Yeah, for sure, let's, you know. So I went, I went down to Mayo, this is a Monday, and I had looked at this. So the study's called the Brazen Trial.
SPEAKER_00Um B-R-E-Z-A-N.
SPEAKER_02B-R-A-Z-A-Z-An. Yeah, so and it's actually um a study out of Dana Farber, the uh uh cancer center at Harvard, um, that was uh written by the doctors there, and it's actually not a pharmaceutical study, which is pretty rare. Uh and so what Brazen is looking at is actually de-escalating the chemotherapy.
SPEAKER_00So it's still pretty aggressive chemotherapy, but it doesn't include the drugs that cause nerve damage, which is super dry-that means it's still including drugs that are well known to treat lymphoma, but just a little bit different order, different cocktail, and without a couple of the ones you were worried about that are not that they think are maybe not as crucial to the treatment. Is that correct?
SPEAKER_02That's yeah, that's my understanding. Yeah. And so it does include the drugs that cause nerve damage, and it doesn't include the drug that causes heart damage, which is also you know a big plus. And then they're looking at adding sort of a newer um generation of the targeted drug, and then the really investigational part is then adding after the chemotherapy is done, um, what was an experimental drug at that time, a drug called Sonrotoclax, which is another pill, um, uh, to see if that would extend the how long people are in remission.
SPEAKER_00Um so and the biggest my understanding from all this is that with mantle cell lymphoma, um, and Joe's kind appears to be a little more slow growing, he did not have um a mutation. If you have this particular mutation, that's a lot worse prognosis. But he fortunately did not have that mutation, which that was a pins and needle day, waiting for that. Um, but the goal is to get in remission as long as possible because it will come back, and then you have to do some other treatment, but it may not be quite as effective as the initial uh hitting it hard and getting it in remission for as long as you can, correct?
SPEAKER_02Yeah, that's exactly right. You know, from my understanding, you know, once it relapses, um then the outcomes people tend not to live as long. And so, but if you can have a really long initial remission, uh plus it gives smart scientists time to come up with better treatments, you know.
SPEAKER_00We're hoping that that is the case.
SPEAKER_02So please stop cutting research for cancer, please. So um, yeah, so we went down to Rochester, met with Dr. Wong um in his research staff, and and they actually uh so this study is only open at uh four institutions in the country. So Dana Farber, Memorial Sloan Kettering, Washington St. Louis at Barnes, and then um, and then Mayo. And I think Mayo actually was the first uh institution after Dana Farber, who started the study to open it. And so, yeah, so they actually got it open like literally, I think like an hour before we got there, like literally that morning.
SPEAKER_00And also just a disclaimer like if anyone's listening who has mantle cell, we're not saying there's a right, like the the approach that you could have done up here in the cities, the triangle protocol is very well studied as the gold standard, and you happen to be doing this other trial that came open, but we're not saying one is better than another, it's very individual depending on all the factors of what how your mantle cell presents, correct?
SPEAKER_02Yep, yep, yep, for sure. Um so uh so I kind of like the idea of getting less toxic treatment. I kind of like the idea of going somewhere where I'm just kind of anonymous patient, you know. Um and and I also like the idea of being on a click trial, you know. I've um I've been really involved in cancer research my whole career, and you know, it's a chance to give back. And so um so and then yeah, and then to your point, the other thing is I think my version is pretty favorable prognosis. So some L cell lymphomas are really very aggressive, and and sort of the two main things that predict how aggressive it's gonna be are as Becca said, there's a secondary mutation in a gene called TP53, those are really difficult to treat. And then whether it's in the lymph nodes or not, actually, you would think bone marrow is really bad, but actually bone marrow involvement is not so bad. It's lymph node involvement that's really bad. And so the fact that mine was in bone marrow and spleen and not in lymph nodes tends to predict for a better prognosis. So I thought, you know, maybe we don't have to treat it quite so aggressively. Now there is a risk that could be wrong if this thing is more aggressive, and we'll look back and like, God, I wish we had treated with more aggressive treatment. But yeah, um, but I think this is probably you know the right thing to do.
SPEAKER_00So and you were trying to balance like if this is pretty close to as effective as the other one, but but my quality of life hopefully would be a little more guaranteed without the nerve damage and heart damage.
SPEAKER_02Yeah. Yeah, so it's but it was tough because you know, usually you've got some time to think about this stuff, but but we had to decide like on the spot. Um and so so yeah, so we decided to to sign consent and and enroll in the protocol. Yeah, it's funny. I mean, the researchers came in and just like, I haven't really had a chance to look at this yet. That's been kind of it, it is not awesome to be the first person on a study.
SPEAKER_00Everyone's trying to figure out how it works and what the rules are.
SPEAKER_02Every time we're there, I'm like, I feel like they're reading it for it.
SPEAKER_00Anyways.
SPEAKER_02Um so uh so the treatment consists of three different things chemotherapy, and so uh the chemotherapy is a drug called Bendamustine, immunotherapy with a drug called Rituximab, which is an antibody that targets a uh protein present on the lymphoma cells, but also on your healthy lymphocytes, so that that's has downsides too. And then this twice-a-day um pill zanibrutinib, uh, which is a non-chemo, but it's a targeted therapy. So we went down a week later, I had my first bendomcinia. Okay, so first mistake in retrospect is you know, Dr. Wong's like, you know, we probably can do this without a port. And my God, like, how many times have I told patients which you have done it without a port, so he's not right.
SPEAKER_00No, he's not wrong.
SPEAKER_02You can't do it without a port. But so um, and I'm like, yeah, I've got, you know, I've got really good veins, it should be fine. And and so some chemotherapy drugs are what we call irritants. Some are are called vesicants, and so if they leak out of the vein, they cause tissue damage. So you have to have a port. And a port is a catheter that goes underneath your skin that you can use to draw blood and give medicine.
SPEAKER_00Uh, but usually by your collarbone area. Yep, yep. Um that stays in for the duration of when you're needing medicine or blood draws, correct? So maybe several months. You might have a port in.
SPEAKER_02Yeah, yeah. And then and then they don't have to, you know, do the hunting for veins, that kind of stuff. But but really at really good veins, I thought it should be fine. Um, so bendamustin, the chemotherapy drug I had, is called an irritant. Um and as an oncologist, I know that this is true, but I didn't actually know what irritant really means until I got it. I mean, so the first one wasn't too bad.
SPEAKER_00Yeah, I don't remember you complaining about that in the first time.
SPEAKER_02Because the nurse kept like, is this burning? Is this burning? Like, I don't even know what to talk about, but you know, it's okay.
SPEAKER_00Yep.
SPEAKER_02But then the second one, I'm like, about one minute in, I'm like, uh, this really hurts. Oh my god. So fortunately, it's only like a 10-minute infusion, but uh, oh my god, it like burned so bad going into that 10 minutes. And then my vein uh was inflamed for I don't know, like a week or two afterwards. Oh, so that that wasn't too awesome. And then the then I was super nervous about the third one, which also really hurt like crazy. So I'm like, why am I going through this?
SPEAKER_00I can have a lot of things. Well, and they would do the 10 minutes of that bendamustine, then they flush it out, and then they do retexamap, right? For the next that one takes maybe like several hours to to go in. So maybe in total you were getting IV chemo for like six hours the first time. Yeah. Maybe closer to three or four the next two times because they were able to go a little faster with it.
SPEAKER_02Yeah, the sec the first one took a long time. And also, um, well, that first one was kind of a self-inflicted wound, also. Yeah. Um, so yeah, the first one was basically all day. The second one was, yeah, probably half a day, I think. And then the third one was about three hours, I would get so they're they're sh they get shorter. Um, and so rituximab, which is the immunotherapy part of it, generally, you know, it's not a chemotherapy, it doesn't make you sick or anything like that, but it can cause, they call them infusion reactions, they're kind of like allergic reactions where you can get shortness of breath and chest pain and almost like almost like an anaphlactic reaction sometimes. You know, low blood pressure, that kind of stuff. And it's very common with the first treatment. So um, so we started the ratexomat, and they started super slow, and then it was pretty fast, right? I think when I started having some chest pressure.
SPEAKER_00Yeah, you had a little bit of chest discomfort, so then they stopped it, and then they went slower when they started it again, and then you did okay for the next couple hours as they gradually increase the rate at which it's going into your system.
SPEAKER_02And honestly, they give you like a big dose of ivy benadril, it's 50 milligrams of ivy Benadryl. And I had also heard that it makes people sleepy, but I didn't know it makes you stoned. I mean, I was like literally stoned.
SPEAKER_00If you take you've taken regular Benadryl for allergies when we had a cabin and you were just out like sleeping the whole day just from a regular over-the-counter, so it was not a great mix for your body, probably.
SPEAKER_02So I was flying high as a kite, and then just like super sleepy. So I don't know if I was the best judge of what's going on with my body. But we were able um to get it up to full rate, and so the infusion center at Mayo closes at six o'clock. And so if you're still there at six o'clock, then they have to transfer you over to the hospital infusion center, which is like it's a huge hassle, right? It's not that big of a hassle. Well, it felt like a hassle. So we're we're we're gonna be just under the gun. So they figured we'd get finished like at 5 45, so just before it was done. And so, I don't know, probably about 5 15, about about 30 minutes ago, I started feeling kind of short of breath. And I I knew that this is probably your Tuxamab reaction. I knew I was supposed to tell the nurse, but you know, I wasn't like super short of breath, it was just a little bit winded. But I knew if I tell her, then it's gonna be a whole big deal, and they're gonna call respiratory therapy and give me a nebulizer, and I'll have to transfer to the other unit. The nurses will be stuck late, and I'm like, it's alright, I'm not gonna say anything. So we finished the infusion right as they were closing. Uh, and then and you have to do this two days in a row, so I have to come back the next. Day for Benjamustin. So we're leaving Mayo. When did I first tell you I was having trouble breaching?
SPEAKER_00Well, you were kind of quiet while we were waiting to get the car. We had the car come from the valet parking guy. And then we started driving, and I'm like, I can hear you wheezing. You sound like you're wheezing. Maybe we need to go back and go either up to clinic or the ER. And you kept saying, No, I'm not, I'm not. I'm like, no, I can hear you wheezing. And so then you wanted to have me quit go get some Benadryl at Walgreens. And it was kind of scary because I didn't know what to expect from the reaction, but they kept saying, if you have any of these symptoms, say something right away and we'll pull back the medicine. So now their clinic is closed, and I don't exactly know where the ER is, but I'm thinking I'm gonna have to bring them into the ER. So we we did know where the Walgreens was. That was close. So I went into Walgreens to get Benadryl and a bottle of water. And of course, the person in front of me was paying in cash, and it was taking forever. Like they had to get the manager to fix out the cash drawer, something was happening. Finally, I just said, I think my husband's having an allergic reaction. I have to get this Benadryl. Can I come back and pay you for it? Can I just bring it out to him right now? And a lady in front of me said, just pull out two pills of Benadryl and run, you know. So there then they quick like checked me out when I told them that, went and gave that to you. Um, but I was very angry because it was uh again, like you were not being a patient, you were like doctoring yourself, but it put me in a really awkward position because I don't know what to expect. I don't know what to do if you go into anaphylactic shock or whatever. And I'm not super familiar with all the mayo buildings where to take you. So that was really scary, and I was very angry about it. So we had to have a discussion about you do not make your own call on this kind of stuff, you just tell the nurses, and if we have to stay late or they have to transfer us, that's what they're here for. So I did tattle on you to the nurses the next day.
SPEAKER_02I I felt bad. That was yeah, that was not a good idea. But yeah, yeah, but fortunately the Benadryl did work and my breathing got better. But yeah, that that was that was a self-inflicted wound. There's no reason for that. Yeah. So, um, so anyways, uh, so we got through that. Um, and it was pretty rough, you know. Uh I was still I was tell my patients, you know, some people chemo's really not that big of a deal, they don't have a lot of side effects. Some people, it really is hard, and then some people they're really tired for a while, and then they feel better, don't know where you're gonna land.
SPEAKER_00And um I was you probably remember this better than I do because I seem not to be able to remember more than I liken it to kind of the amnesia women have when they give birth, and then after you have the baby, you kind of forget all the pain and the discomfort and the all the stuff of labor because otherwise who would have a second child if you actually remembered that in real time. And it's the same with Joe after chemotherapy, he never remembers from cycle to cycle how bad he feels, and then he's always surprised. I have to remind him this is exactly what happened last time.
SPEAKER_02Yeah. So uh yeah, so so I had um type 2 diabetes, and uh one of the treatments you get for side effects is steroids. You know, holy smokes, my blood sugars were just like bonkers, like in the 400s, I was taking insulin like every two hours, so that was not awesome. And then I was I think just super tired and kind of kind of You were nauseous a lot.
SPEAKER_00Yeah, you had to take a lot of zoofran.
SPEAKER_02I didn't I didn't vomit, but I just felt kind of nauseous all the time.
SPEAKER_00I just I just felt crummy.
SPEAKER_02Yeah. Um but then but then it felt better, you know, after a couple weeks.
SPEAKER_00Well, it took about two weeks the first time because when we went back to see the nurse practitioner at Mayo, she said a lot of times with this drug, it's about two weeks of feeling really cruddy, really tired, nauseous. Uh, and then it's like all of a sudden you feel normal for a week. And that's kind of what happened for you. Though at the end of that time, you kind of um felt sick again, but we didn't know if that was because it coincided with me getting my expander infection and being in the hospital, and so you were up late, it was stressful. So we weren't sure if that was just the natural course of the chemo. Do you feel bad, then better, then a little bit bad going into the next one?
SPEAKER_02Yeah, so the the tail end of my first chemo is when Becca got her implant infection, and so yeah, I was I was not getting much sleep, and I don't know. We were a hot mess.
SPEAKER_00Yeah, still a hot mess. I know, right?
SPEAKER_02Oh my god.
SPEAKER_00I wonder if we should um save for the the next piece kind of what it was like to be a patient going through chemotherapy, how that felt for you, and focus a little bit more on less of the doctoring and the medicine piece, but more of the just patient being a patient.
SPEAKER_02Yeah, yeah, that makes sense.
SPEAKER_00Yeah.
SPEAKER_02Well, um, anyways, just to fast forward, so uh so I had I completed three of the first phase of the chemotherapy, the Ben Mustine. Um, and then you know, just as a perfect example of like our screwed up schedule, the third one, because Becca's radiation got messed up uh because of her infection. Got delayed. Got delayed. Um, so she had to start radiation right when I was I needed to go to Mayo for the third chemo. And because it's a two-day chemotherapy, I kind of need to stay there. I have to have a driver. So she couldn't come down with me because she needed to be in Minneapolis for her cancer treatment. And so one of my one of my friends actually came down um and stayed with me, which was super nice. Uh so I got through the the first three, and then the second half of the treatment is um a more intensive drug called called high-dose RSC or HIDAC. And so that's a drug that is usually used for acute leukemia. Uh, I think mantle cell is really the only lymphoma that it's used as a frontline treatment. So that one um you have to be in the hospital for uh because it can cause some scary sounding side effects like you know, strokes, blindness, that kind of stuff, although those are very uncommon. And it's kind of a long infusion. So um so I so I was admitted to the hospital, I guess about a week and a half ago for that. Um and before that, we had a fallout PET scan just to see where we're at, and my PET scan looked much better.
SPEAKER_00Yeah, the spleen had was almost back to normal, wasn't lighting up with cancer. Yeah, yeah.
SPEAKER_02So so it looked like I was having a really good response from the first three treatments, which we were very excited about. Um, so I had that chemo. I was in the hospital for two, three days.
SPEAKER_00Yeah, we've got the hospital. Uh we took your mom down with us. We stayed overnight Monday night because we had to be there real early at 6 a.m. for the PET scan Tuesday. And then um you had a doctor visit, blood lab work done, and then got admitted about one o'clock, but they were changing the study protocol.
SPEAKER_01Yeah.
SPEAKER_00And um, so they were waiting until the end of the day to see if they could hear back if that had been approved by the committee that reviews the cancer protocol. So you didn't get started on your chemo until like probably five or six no, probably later than that. Was it seven or eight? 11 a.m.
SPEAKER_02actually. No, no, no.
SPEAKER_00Yeah, 11. You started at 8 p.m. with the the first part of the chemo.
SPEAKER_02There's sexumab, yeah. But the the cyterabine didn't actually start till 11 because I finished at two.
SPEAKER_00Yeah, because your mom and I stayed till about 12 midnight to make sure you're doing okay on it. Yes, that was a long day.
SPEAKER_02Yeah. So but yeah, but the chemo went fine. This one did not burn my veins, which was really nice. Um and so then, yeah, we went home Thursday, I think, right? Yes, yes, went home Thursday, and then um my blood counts were kind of low going into this chemo, and so my oncologist was worried. So the main thing with this chemo is it can cause really low blood counts, and he was worried that I might need transfusions. So he wanted me to get my labs drawn three times a week, so Monday, Wednesday, Friday. And I'm like, oh my god, my veins, which were really good when we started, are no longer so good. Um, and so that's been kind of adventurable, although the full bottoms have done a great job. So uh yeah, so this past couple weeks I've had to go in for labs three times a week. Initially I did pretty well, but then my my blood counts did really crash last week. So my white count dropped into the sort of critical range. Um my neutrophil count, which is sort of the main infection-infighting blood cell, dropped to 0.1. It was basically zero.
SPEAKER_00Um so you're at a very high risk of infection.
SPEAKER_02So so my my immune system was was super weak. And then my platelet count, which is kind of what started this whole thing, also got really low into sort of the risk for bleeding um range. So then um Dr. Hurderson at Abbott uh great very um graceful um was great to get me in on very short notice uh for a platelet transfusion. So I had a platelet transfusion last week, I had to go on another antibiotic. Uh, and then I just felt terrible, honestly. I would say that's the worst I felt when my blood counts were low. And then um then we thought for sure we'd had emergency revives having some really bad chills, low-grade fever, my heart rate was up to like 130.
SPEAKER_00Yeah, I probably should have gone to the hospital, but well, we were watching your temperature, it never got to like the 100.4, but we were kind of keeping every half hour checking it.
SPEAKER_02Yeah, we got to 99.9, but then it then it did get better. And then um, and then uh early this week, my blood count showed that my blood my bone mars recovering now, so my white blood count's back to actually back up to normal. My platelets, they're still low, but they're safe enough that I don't need more platelet transfusions, and I feel way better. Um, which is why we're doing this podcast today, because I was in no condition to do it earlier in the week. So, um, so, anyways, that's sort of a long rambling story of how I ended up, you know, joining Becca. Also having to go through cancer treatment, so it's a very different kind of a treatment, but um Yeah, you're doing the chemotherapy, but not the radiation or surgery, or surgery.
SPEAKER_00I'm doing all the surgery radiation parts of it, and you're doing the chemo part of it. Yeah, so you haven't lost your hair yet. Not yet, yeah. I wonder uh maybe you won't. Well, maybe.
SPEAKER_02I mean, let's be honest, I have already lost a lot of hair chemo.
SPEAKER_00I said he's been preparing for this hair loss for years. I know he's been draining for it.
SPEAKER_02Yep, so we'll see. Um, so my next round of chemo is in a week and a half. Right? Yeah, week and a half. And then so I I'll be done.
SPEAKER_00No, your your next chemo is uh this coming Monday. Oh, you're right. Less than a week. All right. See amnesia.
SPEAKER_02I swear to God, I must be getting chemo brain. Um and then only one more after that. So I should be done mid-July. Uh and and then um then we go into what's called maintenance treatment. So I'll get the immunotherapy infusion once every two months, along with that pill Xana brut nib, and then maybe this investigational drugs on rotlax that's randomized, so I'll find out about that in August. And then I'll have to do that for two years. So um so it's kind of a bummer. I've got to be at Mayo every month for the next two years for blood work and checkups, which makes traveling a little tricky. Um, but uh, but it's not too far, you know, so it's we know the drive well at this point.
SPEAKER_00Yeah. So um I think next uh next episode we should talk a little bit more about your experience as being a physician in the patient role. Yeah, it's been and how that what you've learned, you know, observations, things like that. And also um, we had a good suggestion from somebody who had emailed us that they'd also like to hear what um what would be helpful for health professionals to know now that you've been on the other side of it.
SPEAKER_02Like what have been helpful things, not helpful things, like what in what comments we have found helpful and which um yeah, I mean, yeah, yeah, that I think that'd be a interesting I've got thoughts about that. Yeah. Um so, anyways, but so that's basically just to get everyone up to speed on like uh what I've been dealing with. Um the scheduling has been really tricky. You know, we've we looked at was it last week we figured that we had a medical appointment every single day between the two of us.
SPEAKER_00Yep.
SPEAKER_02It seems like we one of us has a medical appointment most days.
SPEAKER_00I know it feels like I should be done now that radiation's done, and I'm supposed to be going on a uh anti-estrogen pill now for the next five to ten years, but I still have a lot of appointments. Yeah, do you want to tell people like where you stand with things? Well, and I don't want to take up too much more time because I know we're kind of probably going over time, but um uh I have uh yeah, I'm waiting for my estrogen level to come back because I want to make sure that it's completely suppressed.
SPEAKER_02Yeah, so talk about the zolodex shots.
SPEAKER_00Okay, so I get the zolodex shots at once a month. It's supposed to suppress my ovaries from making estrogen. And if you're postmenopausal or not having estrogen, then they put you on an aromatase inhibitor pill instead of tamoxifen, which is more for pre-menopausal women. But I asked Joel, well, what's the difference? Why do they do that versus tamoxifen, depending on your um menopause status? And he was talking about how the um aromatase inhibitor needs to have the estrogen suppressed to do its job. And so I said, Well, how do I know for sure these shots are working and suppressing my estrogen? Because I don't want to rely on that for the next five to ten years and realize later, oh, my estrogen really wasn't adequately adequately being suppressed like it's supposed to. So I'm still waiting for that result to come back. It's supposed to take six to ten days. I have my blood work a week ago Friday. So it's taking a long time, and then we'll st I'll start that pill plus another um pill that will help with uh reducing cancer cell growth once I get the go-ahead that my estrogen is suppressed enough. Um, yeah, and I'm still doing some physical therapy and getting a new sleeve for my baby lymphedema on my left arm, and uh yeah, so just multiple appointments are still coming.
SPEAKER_02Yep, yeah. Well, how are you doing?
SPEAKER_00Tired.
SPEAKER_02Yeah, I know, right? Yeah, I would say um yeah, this this last couple weeks, I think for both of us has been I think we're just done with it. I just feel like alright, I'm losing my sort of drive, my gonna fight this cancer. Now I'm just sort of like, can this be done now?
SPEAKER_00Yeah, I'm getting tired of this.
SPEAKER_02So but we'll we'll get our second win.
SPEAKER_00Yeah, I think it's normal to like just go, go, go, go, go, and then all of a sudden when and I keep seeing uh things in my social media feed because they know my algorithm apparently, but that so many people say it's kind of when treatment's slowing down or even ending and you're on maintenance that it kind of hits you. Yeah. Because you haven't had a time to process everything when you're in kind of the and you're when you're actively doing treatment, you feel like you're doing something, right? And then when you're not and you're just doing a pill, you're like, well, is this enough? Yeah, my what's happening in my body that I don't know about? So well, you'll be eating labs every two weeks, so you'll feel like we'll know what's going on in my body.
SPEAKER_02Yeah. Becca, speaking of social media feeds, I I don't know. I mean, I hate Mark Zuckerberg, but God does he have me nailed in his algorithms. It seems like I buy more garbage off of Instagram. But but then you saw, wasn't it in your Facebook feed you saw those bracelets?
SPEAKER_00Yes, I saw a couple of bracelets that are probably not fit to say what it says.
SPEAKER_02But well, you can you can abbreviate. So on the outside the bracelet, it says Um This too shall pass. And on the inside of the bracelet.
SPEAKER_00But effing hell, which really kind of sums up this month's theme for our emotional levels.
SPEAKER_02So so we ordered uh uh matching bracelets for those.
SPEAKER_00Yeah.
SPEAKER_02Um and yeah, that's exactly how I feel. Yeah, I mean we're gonna get through it, but yeah, I'm kinda tired of it.
SPEAKER_00So, anyways.
SPEAKER_02Um, but but um we're doing good, I think. We're okay. Yeah, we're doing we're doing okay. Yeah. So so, anyways. Um, well, I think we'll probably call that one a wrap. Um, and thank you for everyone who's given us good feedback about this podcast. Um please reach out. Uh, we'll have our email contact listed at the bottom of this if anybody has any suggestions or or comments. Uh we'd love to hear those. And otherwise, we'll be back at it uh probably after my next chemo, depending on how this one goes.
SPEAKER_00Yeah, or maybe we'll get one in this weekend before you start. Yeah, we'll see. All right.
SPEAKER_02Well, thanks everyone. We'll we'll uh we'll talk at you soon.
SPEAKER_00Thanks.