Day 175: Healthcare Nonsense and Red Tape

Kristen (00:03): I'm Kristin Vengler and our mission with this podcast is to help you and the people who love you through the shock of diagnosis and treatment.

Eva (00:11): I'm Eva Sheie and the incredible woman whose story you're about to hear is a nurse practitioner in San Francisco who has dedicated her life to caring for patients more vulnerable than you can imagine.

Kristen (00:23): Her name is Natasha. This is a story about what happens when you have breast cancer told in real time.

(00:34): I'm just gonna do a little bit of a recap of where we have been. In case you're just tuning in and you haven't heard Natasha's story. Natasha has been through chemo, she has had her lumpectomy, and the last time we talked to Natasha, she had taken her bandages off and was brave enough to look at her chest. All was good. And there was no evidence of any cancer whatsoever when they did the lumpectomy. Like none. Zero.

Natasha (01:04): Yeah.

Kristen (01:05): So radiation has been on the table and she's got the same questions that I had about, "well, if you're taking my entire chest off, then what the hell are you gonna radiate?" And so Natasha, let's talk about what happened when you went to your radiology appointment.

Natasha (01:24): So I actually met first with a resident, like a, not a student doctor. I mean, they finished medical school, but they're still in training. And it's the first time I've actually had a guy on my team. I mean, there's, there's a doctor overseeing him. So that was a little strange when he wants to do a physical exam and take a look at the surgical scars and everything is like, oh, I haven't had to do this in front of a a dude before. It was, it was a little strange. Within a couple of seconds I said to him, he's like, you know, I'm gonna start my sort of educational spiel. And I was like, "well, I have a question". You know, it's like, "can we back up?" My surgeon looked me in the face and said, you're cancer free. I've looked at the pathology report from my surgery and everything they took out showed no sign of cancer, not in the, the breast mass. They took out three lymph nodes and there was no cancer in any of it. The chemo, chemo did such a great job. So yeah, like Kristen's comment of like, what, what are you radiating? If it's all kind of been taken care of?

Kristen (02:21): Right.

Natasha (02:21): And the answer that I was kind of expecting is like, well, if there's any micro cells, we really can't see them. They're not gonna show up on a CT scan, you know, until they all clump together and make a certain size. And one interesting thing that he told me, and I don't know if it's gonna be the same with every medical center, but he said, if you have a lumpectomy, you're pretty much guaranteed to get radiation. So don't anybody hold me to that, but that was what he told me. I was a stage two, which meant that it had gone to my lymph nodes. So I don't know if that makes a difference.

Kristen (02:54): To back that up. I have a friend who had the choice, she had a recurrence after like 10 years, and she had a choice of a lumpectomy and radiation or a mastectomy. And her husband had actually helped build the MD Anderson here and knew a lot about the radiation. And he said, I know it sounds weird, but you're going to have less side effects if you have a mastectomy.

(03:19): Wow.

(03:20): Then the radiation. And so that makes sense. Like now that you're saying that, it's like, "oh, okay, I've heard that".

Natasha (03:28): Yeah. So, you know, I fought back a little bit, but it's like, I'm not stupid. I followed the recipe up until now and it's worked for me. So if they're recommending radiation, I mean they weren't even recommending it. It was like this is what comes next. Right. But then things got complicated because there were three options. So everybody, all the medical team makes decisions for you up to a point. And then it becomes this joint decision making that I think's really hard in medicine. So the options I had was number one, just radiate the breast. Number two, radiate the breast and the lymph nodes in my armpit, or number three, the breast and a lot more lymph nodes in the area. So the lymph nodes by my collarbone, above my collarbone, below my collar, like a, just a bigger, bigger area. And so the resident's attending doctor came in and you know, and we talked about it and there's a clinical trial for option number three for people with my stage to see if radiating a ton more lymph nodes actually does anything to prevent recurrence, but there's no data.

(04:43): And that would've been six weeks. Number two, which was the do the, the breast and the lymph nodes. That made sense to me because I had lymph node involvement. And then number one, there wasn't much difference in like timing of the treatment or the length of treatment between option one and option two. So I opted for option two, but I spent some time really kind of trying to push the doctors on like, "am I being foolish?" Right. You know, it's like right now six weeks feels impossible, but in a year's time it won't. And they were very supportive. It's just like, no, we actually have no data to support option three. And then they started giving me some of the, the side effects from doing a much larger lymph node radiation. And they were like "you may have difficulty swallowing for a while". And I was like, oh, now we are getting into like lifestyle changes that I'm just, I've seen enough patients in my life who've been kind of permanently disabled by radiation. So I think it may be the option two, so the whole breast and the under arm lymph nodes I, I think is about three and a half weeks.

Kristen (05:58): Mm-hmm. . That's great.

Natasha (06:00): Yeah. Which feels much more manageable, you know? And it's such a great hospital. Like I started to talk about skincare and they're like, oh, you'll meet with our nurse. She'll go through it, but we give you all the stuff that you need.

Kristen (06:12): Oh wow.

Natasha (06:13): Like I don't have to go on Amazon and then buy it. And they're like, no, no, no, we'll give you everything. Like, oh, okay. That sounds pretty good.

Kristen (06:20): That's great.

Natasha (06:20): Yeah. So I'll definitely share in a couple of weeks what they give me and see if you have any recommendations of stuff that you know, they've maybe missed. And they talked me through the logistics. You have to go for the simulation CT scan and the two little tattoos that I'll get. And the interesting thing that I hadn't heard is, you know, they talked about the skin changes and there may be some discoloration in the breast that could last a year or so, and I knew fatigue was one of the side effects. And they were like, we don't know if it's the radiation or if it's the schlepping back and forth to the clinic every day for six weeks that makes people tired is like, but what we do see if it's related to the radiation is a week after you finish radiation, that's when people's fatigue is the worst. It's like your body is still dealing with the radiation. And I hadn't heard that before. Um, I don't know, was that your experience?

Kristen (07:14): I had option three. Right. And so I had pretty deep burns and as far as the burns went, it was like I kept baking,

Natasha (07:24): Oh man.

Kristen (07:24): for a week. And the fatigue did follow. But what I understand is if you can do some sort of walking, biking, whatever for 20 minutes to a half an hour after the session, it somehow battles the fatigue. That's what they told me. Yeah. And so it was hard for me to tell the difference between the fatigue and the, like the fatigue from radiation or the fatigue from the pain.

Natasha (07:58): And I feel like I'm going into it fatigued. It's like, you know, I'm still, I'm still way behind who I normally am. It's like, you know, I, I did my first full day of work recently and it was exhausting. And we haven't even started seeing patients yet. I'm just like catching up on email and planning for their reopening of, of my clinic. So I could probably sleep till noon every day if I had my, my own way.

Kristen (08:27): Yeah. Well if you think about it, going through chemo, just chemo. It knocks your body all the way down to nothing and you have to build absolutely everything back up.

Natasha (08:38): Yeah.

Kristen (08:39): Right. And then you had surgery and you had to heal from that. And it, that takes your body down also. You know that as a nurse.

(08:45): Yeah. Yeah.

(08:46): But at the same time, when you're going through it, you're like, no, that's not how it's gonna be.

Natasha (08:51): Right. I mean, I kind of feel like because I've stopped puking from the chemo it should be done.

Kristen (08:57): Right. And again, you're getting those hormone blockers every three weeks.

Natasha (09:01): Yeah. In a way nothing's really changed. Like it's like you're cancer free, but you've got radiation ahead and you're gonna be on the hormone blockers. And it's like, so I'm so grateful and I feel so blessed that that's, was the situation, but I would love to just like wash my hands of it and walk away. And there was just, you know, I was having a, some definitely self pity days. Like again, I'll acknowledge like I've had this pretty easy. So you know, people who are going through later stages and much bigger surgeries and longer chemo with the, the second chemo that they call the AC chemo that, I mean Kristen, you know, it really knocks people out. But I'm so tired of being a cancer patient, you know, it's like they know me at the front desk already.

Kristen (09:44): Yeah. It's very interesting to hear you say it. I'm sad that that's how you feel, but I can tell you that exactly in this spot, I think it was probably one or two podcasts after my surgery. I just said, I feel like I've been in a boxing ring all year long and I just need a damn rest. Can I just not keep pushing through like this? I am exhausted, and again, tired of being a cancer patient. And it's kind of like, okay, the cancer's gone. Now I can heal and I can get back to everything. But it's kind of like you've had chemo and the lumpectomy, so you're like two-thirds, right? You have this radiation and then you have the rest of the hormone blockers, right? Yeah. And so the only silver lining with the hormone blockers is that you don't have to take any pills. Right, right. For five to 10 years. And those side effects are pretty rough.

Natasha (10:43): I follow a number of people on, you know, a lot of the breast cancer Facebook groups and a lot of the conversation is about I can't stand this drug anymore. I'm, I know the risk and I'm gonna come off it. Which is, you know, makes me so angry that the pharmaceutical industry hasn't addressed that. And I'm not a chemist, like I don't know how drugs get made, but there must be a way to modulate some of those side effects. Like if it's to the point where women are stopping taking something, it's like, come on guys, step up. Do something about it.

(11:09): Right.

(11:09): It's infuriating. You know, I think what the doctors don't understand and maybe like friends and family don't understand is there's all the treatments that you have to go through, but there's all the like micro screw ups that the system makes.

Kristen (11:23): Oh yeah.

Natasha (11:24): That you have to be constantly on it. Like for example, my plastic surgery appointment, they called me and they rescheduled it. Like I have, nobody has seen my incisions since surgery from the surgical team.Which is fine cuz like I've been around long enough and I know that I'm doing okay, but I still have stitches and the big incision under, under my arm. So they called and they had to reschedule the plastic surgery appointment and they pushed it out to like the second week of September.

(11:50): What?

(11:50): And radiation is like, no, we can't start radiation until your plastic surgeon has signed off. So, you know, I'm like calling plastic and trying to get it changed, you know, we can't do it and can you do this date? And then, you know, Dr. such and such, and it's just like, you know, I've been on hold for 40 minutes and now like I'm dealing with, it's just like there's a lot of

Kristen (12:11): Red tape. Yeah, yeah. Imagine if you didn't know how to go about doing all of that. I mean like, yeah. Yeah. Did you get anywhere?

Natasha (12:21): Yeah. I mean, bizarrely enough they, my initial appointment was on like the 31st and then they, they rescheduled it to sometime in September and then they called and remade it on the 31st. I'm like, so why did you change it? It's just super, super weird.

Kristen (12:37): So when is the mapping for the radiation supposed to be?

Natasha (12:40): So that is next week. So that they're moving pretty quickly, which is good. But again, it'll be six weeks by the time I start treatment it'll be six weeks from surgery, which is what they wanted, what they were looking for.

Kristen (12:54): Yeah. Yeah. They always say four to six weeks. And so yours will probably start like first week in September maybe.

Natasha (13:02): I'm not entirely sure. Yeah. But pretty soon.

Kristen (13:05): Yeah.

Natasha (13:07): The one thing that, you know, I was sort of thinking about late last night was the difficulty surgeons run into with lymph nodes. So they took out the sentinel lymph node, which was benign, and two others which were benign. What if the fourth one they were about to take showed some cancer cells? Like you never know where to stop. And it's their training and they do know where to stop. And the lymphatic system is so, it's such a network through our body, and it's so complicated, like, well if it's in my armpit lymph nodes, doesn't it just like get into the system? Like couldn't it have squirted all over the place? You know? And they were like, well, we're not gonna like radiate the lymph nodes in your groin for a breast cancer. Like, we're not gonna radiate the entire body. So I was like, okay, I, I get it. And then the other strange thing that they mentioned was an increased risk of lymphoedema with radiation, which I also didn't know was a thing. I thought I'd escape that from the surgery. And they're like, no, this is, you know, and again, like it's a small chance, but we have to tell you, it's like, oh my god, this lymphedema does not go away. It's like hanging over your head.

Kristen (14:07): If you can get them to write you a prescription for lymphedema PT.

Natasha (14:11): Yeah.

Kristen (14:12): That's actually who wrote mine was the, um, radiation oncologist.

Natasha (14:16): Mm-hmm.. And it, it was very funny at, you know, another sort of observation yesterday...So talking about all these people staring at, at our boobs all the time. like, it's very weird to be in the room and you know, they're like, can you take your, the gown off? So I took the gown off and it's because I don't have a, a spouse anymore and like not many people have actually seen this.

(14:35): Right.

(14:36): And to have the two of them sort of standing in front of me looking as if they're like sizing up like a vintage car, like, oh, the headlights are pretty good. And then the resident is like, yeah, they look pretty good. And you know, and my inner voice, which often luckily doesn't come out, I was like, well thanks, you know, it's like it's really.

Kristen (14:56): .

Natasha (14:59): And it's interesting as the surgery settles down, the changes I've noticed, it's like if I'm looking at myself in the mirror face on, you can't really tell. From the side, you can see the scar and it's, it's pretty obvious. But if I tense the muscle in my right chest, the boob looks all weird and deformed and kind of like, it's got like nooks and crannies and crevices. It's really odd just like tightening that boob muscle. It's like, oh well I'll have to remember not to do that . And then if, definitely, when I lie flat, it's like, oh, now it looks kind of weird too.

Kristen (15:35): Well there's, yeah, they took tissue out, right?

(15:38): Mm-hmm. . Oh yeah.

(15:39): Yeah. And so it's gonna be unbalanced and you know that if you decide you wanna have some kind of plastic surgery done to that, that like you can do that.

Natasha (15:47): Yeah. I mean I, I was thinking about that a couple nights ago and it's really, I don't, I don't want another surgery. But a couple of people have given me some really nice scar cream that seems to be helping and you know, I'm lucky enough, like I don't keloid, make those big like kind of chunky scars that some people unfortunately make. But also another thing, like I'd noticed some like kind of weird areas in the scar under my boob and I, I brought them up to radiation. I was like, look, I know this isn't your, you know, you didn't do this and you're not the surgeon. And I should have known this, it's so funny like being a nurse and having worked in surgery and having assisted in like a number of breast surgeries, not remembering that the stitches are internal and then they glue it. Right. So what's happening is the stitches are just wriggling themselves out. So it's like this kind of little sort of porcupine thing. And it was great. And the, the radiation oncologist, like the chief doctor was like, please, please, please don't pull them.

(16:44): Yeah.

(16:44): Let them come out. She's like, you'll be tempted to look in the mirror with your tweezers and pull these things out. She's like, don't do it. You did, or you didn't?

Kristen (16:53): Oh yeah, I did. Like, right, right underneath cuz it was, it was a clear, I mean it wasn't very long, you know, like a 16th of an inch or something like that. And it was this clear thing and I was pulling at it and I got lucky though. I went to my lymphedema appointment and I was like, "Christine, can you just look at this?" She's like, "oh yeah, I'll clip that". She's like, "it must not have dissolved on the other end yet". And she's like, "they're, you're gonna have like a whole bunch of those".

Natasha (17:19): Yeah. This other incision under my armpit is like, you know, it's probably about two inches and it still has these clear external stitches. And I could probably, you know, squint in the mirror, take them out myself. But they were like, "no, please, please don't. Let, let the plastic surgeon do it.

Kristen (17:37): So talk to me a little bit about what it was like to go back to work. I know you said it was exhausting, but there's a lot of pieces to this.

Natasha (17:44): There is,

Kristen (17:45): And I think you said that you're reopening your clinic. So were your patients not getting seen while you were gone?

Natasha (17:52): No, we unfortunately, because I'm the only person who works in the clinic for various long political reasons to do with U C S F versus Department of Public Health and all kinds of nonsense. So when I went out on leave in March, unfortunately we had to close the clinic down completely. So a lot of my patients went back to primary care or they just kind of skipped it. But what has happened in the past five months is that there's a lot of new consults have come in for various doctors throughout the system who want their patients to be seen in the palliative care clinic. And so somebody was kind enough to have this kind of like auto response to say clinic's reopening in October. Um, unfortunately we're not taking patients at this point. We'll get back in touch. So what I'm doing now is going through all the new consults and going back to the doctors and seeing if they still want me to see their patients and scheduling the patients.

(18:46): And again, I would say 80 to 85% of the patients are cancer patients. Yeah. It's not a majority breast cancer but there's obviously, you know, it's like there's quite a few breast cancers in there. And just reading people's medical charts is, I mean first of all it's fascinating. Like I could spend all day just reading charts. You know, and you, there's the story of like somebody diagnosed in 2014, went through chemo, went through surgery, had radiation, had a scare in 2017 and now they're back with like metastatic to spine and to here and to them just like, oh my God. Like reading this stuff is like, it just takes on a whole new, a whole new world of... Yeah. I mean maybe that's why today I just felt like super depressed today. It's, a good friend of mine who's also a neighbor just found out that her partner has a metastatic stomach cancer, you know, a stage four and it's just, you know, I'm just like fuck. Like does this never end? And another one of these stories where no symptoms until it's really serious.

Kristen (19:58): Yeah. And it's heart wrenching.

Natasha (20:00): Yeah. I think I've mentioned this before. I'm lucky enough to work with a really fantastic chaplain who, because of the nature of palliative care, he's in every appointment that I have. And we've only been working together for, I think he's maybe been with us for a year and I've been out since March. So we didn't do clinic together for very long but he, he has a really good read on me and I think if things were becoming too much, he just has a really like high emotional intelligence I think he would pick up on it and send me out.

(20:32): Okay. That's good.

(20:33): Yeah. And I was actually also going to, um, when it gets closer to clinic time opening, sit down and basically say to him like, "I need your help. If you feel like I'm making this about me, please let me know".

(20:45): Right.

(20:46): Cause that's one of my big fears. You know, it was interesting with my neighbor's partner because I, I immediately jumped on the like, oh let me tell you guys about chemo cuz he was like getting set up ready for chemo. And I brought my ice mitts and ice feet over to him for the neuropathy and all of this. Well it turns out he's on a completely different chemo regimen. He's not allowed to have anything cold near his hands and feet because it increases the neuropathy. So it's just like yeah, our journey is not everybody, I mean we've talked about this like me and you, our journeys are different with the same disease.

(21:22): Right.

(21:23): You know, it was interesting to me. It's like oh wow, there's a chemo where you, like to the point where he's been told like not to take eggs outta the fridge cause they're too cold on his hands.

Kristen (21:32): Whoa.

Natasha (21:33): Yeah.

Kristen (21:35): So you have all of September to kind of get geared up?

Natasha (21:39): Yeah, we're opening the inpatient service in mid-September and I, I generally see patients who uh, if they're in the hospital and it looks like they'll come to my clinic then I'll go and say hi and introduce myself and say, you know, you are gonna get a call from us in a week or so and we'll schedule. Or if the list just gets too big for the doctor on service and he or she needs some help, I'll go see some patients. But yeah, my big thing is the clinic opening in October. Um, so yeah it feels, yes I'm back at work but there's no like big pressure, no time crunch. Like I didn't, I don't have to clock in at a certain time.

(22:14): Right.

(22:14): We're all grownups now. It's like I have a job and I'll do it.

Kristen (22:18): Is the location still the same?

Natasha (22:20): It is at the general hospital. Yeah. Which is great cuz it's a mile or so away from me. Yeah, it's a good bicycle ride. And what's happening apparently towards the end of the year is oncology is moving into the infusion center unit. So all of oncology in the hospital is on the same floor. Which is great logistically because it means like the oncologists are much more accessible if I have questions and patients feel like we are a much more integrated service. But also it's like, oh it's more cancer coming into my life. Cause I, you know, I don't just see cancer patients. I see like emphysema patients and end stage kidney disease and liver. But it's like, it's very oncology focused and was interesting actually with radiation yesterday. You know, I guess it's small talk, you know, what do you do? And I tell them, and it was the first time, it was actually the resident yesterday and I hope like he doesn't lose all this when he becomes like, you know, a fully fledged doctor. But I told him, you know, I do palliative care mostly oncology. And he is like, that's ironic. I'm like yeah isn't it ? Yeah.

Kristen (23:28): Well how did it feel to go into your office after having been and still in an infusion center?

Natasha (23:37): I had much more of an understanding of what might be going through people's minds when they're sitting getting chemo, from the very first chemo where you're like, how's this gonna go? Am I gonna react? Am I like, is my breathing slowing down? Like what's going on?, to the final chemo. And acknowledging that some patients, you know, like my neighbor's partner is gonna be on chemo for life. When I bitch and moan about, "oh I need to go into the infusion center until March". Some people like, this is your future. It's like chemo every three weeks until you can't tolerate it or your disease progresses. So I've had a number of patients come in with a stage four who were, you know, again on like chemo for, for life or the chemo will start because their blood counts go too low or something. And then they find out that the intent of the chemo was never to cure the cancer. There's no hope of curing the cancer. It's this so-called like palliative chemo. Which is an interesting

Kristen (24:34): Wow.

Natasha (24:34): Flash of words. And they're kind of furious. They're like, "well why are they treating me if it's not gonna cure my disease? I don't get it". It's like I'm not gonna take antibiotics that aren't gonna take my infection away.

Kristen (24:44): Very good analogy. Yeah, yeah, yeah,

Natasha (24:47): Yeah. They're just like, "this is just making me sick and it's not, how do we know what it's doing?"

Kristen (24:54): Right. That has to be really hard to swallow because I think both you and I had the experience, and I know you talked about how it was very weird, you felt fine but it, you knew that once chemo started in a few weeks you weren't gonna be feeling fine. And it's just, it's weird to know that you're gonna do something that's gonna tear your body down. And I don't know that I could have done that if we weren't working to cure it.

Natasha (25:18): Yeah. No, no, no. No way.

Kristen (25:21): So talk to me a little bit about your weight.

Natasha (25:24): Oh man. So this week I'm down to 104 pounds, which I don't know, like in England we don't weigh in pounds. I don't even know how, like when I last weighed this little. I know it has a lot to do, like things will be better now I'm at work because there's much more structure in my day. You know, I recognize like being single, being depressed, having become very used to not really eating. It's kind of a pain in the ass to cook for myself. Like I love cooking but I like cooking for other people. And so I've become very accustomed to not really eating properly and my body's sort of become very used to feeling hungry. Um, I don't even know if I feel hungry anymore. It's got to the point where getting dressed for work the other day cuz I, I don't wear scrubs cuz I'm not a bedside nurse,

(26:16): but I do like the sort of the professional, mildly casual. But I, I dress nicely for work. I think it's a sign of respect to my patients. But none of my freaking clothes fit. Like I just look like a scarecrow in them, you know? And I was like, this is, this is now becoming ridiculous. So last night in bed I googled high calorie foods. And today, actually sitting in front of me, I have a bag of dark chocolate raisins, a thing of peanuts and a thing of dates. And one date is 55 calories. So.

Kristen (26:48): Eat up girl.

Natasha (26:48): Yeah. Four dates and you've got 200 calories in you and. But it's very weird to be shopping for snacks and what we kind of consider like crappy food. Like last night I made chicken strips and french fries and so like I was just trying anything. It's like this is not what my mind has been raised as a woman in the western world to eat. Like I think we're all on a diet from the age of about 15 or maybe even earlier these days. And it's just, I mean I've been lucky enough that I have genes that I've never really worried about my weight. Like I, you know, I think at my heaviest I've been like 130, maybe a little over 130, but 104 is really, really disgusting. You know? And I'm just sort of bony, my port sticks out a lot more.

(27:36): I was going out the other night and I had a shirt on that like with her like a camisole top underneath. And so the shirt's kind of opened a bit and I was like, oh my port's becoming really obvious. So I've also bought some of those very high calorie, they say protein shakes, but I'm doing it more for the calorie, like this 500 plus calories in one of these bottles. So I'm like, initially I had this little bit of curiosity of like wonder how low my weight can actually go. And then I was like, no, that's like, that may explain my fatigue my, not unstable, but my sort of crappy emotional state at times, my horrible sleep. You know, last night I was still awake at 2:30. I'm probably really, really hungry, I just don't realize.

(28:21): Yeah.

(28:22): And, I was sort of brought up in a family where you don't eat between meals, so if you're hungry you wait for dinner. So we, we didn't have snacks and cookies and cake and any of that. It was just probably a very English approach, you know, growing up in the seventies. Whereas now I'm, my new message to myself is it's like I kind of have to snack all day. I want 20 pounds back and that's gonna take a year probably. I don't know. I mean I don't think anybody would, would expect to lose 20 pounds really quickly. So I don't think I'm gonna gain it back quickly either.

Kristen (28:57): Right. Some weight training could help with their muscle mass, cause muscle weighs more than fat. And so that could be something once you have the energy to do that, that maybe a doctor would recommend. And I mean in that vein have, what are your doctors saying? Have they been alarmed at all? Um,

Natasha (29:14): Not particularly. No. And I think it's partly because I am not really seeing a consistent doctor. Like my original oncologist, her work's kind of done like she's overseeing everything, and making referrals. But I don't know that the radiation oncology team yesterday knew that a year ago I weighed 125 pounds.

Kristen (29:38): Well they should have your chart and be looking. That's my take. But

Natasha (29:42): No, maybe, maybe if I went to primary care, it's like that. I don't think they're looking at it. All of my, the two drugs that I get in infusion are all weight dosed. So you'd think there that somebody would realize that my weight's dropping and the dose I'm getting is actually decreasing. But I think it's just kind of outside of their realm of what they're looking at probably.

Kristen (30:04): And how are your labs? Cause if your labs are strong, they're probably like, "okay, she's healthy."

Natasha (30:09): Yeah, they really are. It's weird. So one of the, the blood tests that we look at for malnutrition is um, something called albumin. And I was curious what my albumin looked like and my protein, and they're fine. I don't know if it's just like, not cosmetic, but just like a body image thing, but also kind of recognizing that I have to get a handle on this. Like, I'm not saying like it's an eating disorder, but it's like there's a mild, just like reprogramming, it's like you're gonna have to eat snacks all day and you know you're gonna not gonna go for the the Pepsi light. You're gonna go for like whatever the Pepsi heavy. You know, it's like you just like, even if it's empty calories, it's still calories. And somebody other day was like, no, you can't go through life counting calories. I was like, you know, I have to do something at this point. It has to turn around. So that's my promise to the two of us. It's like when this journey finishes, I wanna have 10 pounds back.

Kristen (31:06): Oh yeah, yeah, yeah. By March I think, I think it's reasonable to gain 20 pounds by March.

Natasha (31:12): Yeah. Unfortunately some of this is also a, a leftover from when my husband walked out, I just went to bed and didn't eat for two months. So I'd already put that, I kind of associated not eating with a depression and a sadness that has just like, it's kind of my go-to. You know, I know some people eat too much if they're sad and depressed, but I just shut down. It's like I'm a worthless piece of crap and I don't deserve nutrition.

Kristen (31:39): Oh gosh.

Natasha (31:40): Oh yeah. Oh, it's great.

Kristen (31:43): So you mentioned the situation with your ex. Are you comfortable talking about kind of where things stand right now and and how you're feeling a year later?

Natasha (31:53): Yeah, it's been interesting with, so it's been over a year. He, he left beginning of August last year. And we haven't, he left to be with his girlfriend, so obviously him and I have not been together since then. And I was definitely doing better eight months ago than I am now. And there's something I think getting triggered about going back to work, kind of starting over again. Like I've forgotten that a year's gone by. Like it almost feels like this is much more recent than it really is. Any couple separating there's...We are finalizing divorce paperwork, and managing our 2021 taxes, and which we had to file together. And there's been a little more contact recently while we're dealing with just logistics of that. And it's um, you know, I did one of those things where my cell phone has a different notification noise if I get a message from him.

Kristen (32:50): Right.

Natasha (32:51): And I should probably change that because I get like a little kind of burst of excitement or I don't know what it is.

(32:59): Like adrenaline.

(33:00): Yeah, just, and I think what I'm realizing is like I miss having a partner that I live with, but he was right in realizing that we weren't each other's partner. Yeah. So yeah, I've just had some sort of loneliness and I want to hang out with my friends but I don't really want to socialize. And yeah, it's still very fresh. It's bizarre. You know, it's like because I'm living in the house that we lived in together. And I've made some changes, you know, I've changed the artwork and I've changed some of the carpets around and moved some furniture around, but I can still see his image in every room in the house. Like it, you know, it wouldn't really surprise me to see him walk into this room right now.

(33:51): Right.

(33:52): You know, and so other people are like, well maybe you know, when your treatment's done, sell your house and buy another one. Um, like make something that's really your own. But I'm also one of those women that I sort of, I gave a lot of the decision making over to him and so I'm still learning how to make my own decisions, which,

Kristen (34:11): Yeah.

Natasha (34:12): Just little things like, you know, decor for the house or which restaurant we are eating in. Like not that he was, I mean he wasn't a bully about it but he just like, he had opinions and it makes life smoother if you go along with them.

(34:26): Sure.

(34:26): Cause I really don't care what carpet we have particularly, or which restaurant we, like, I'm totally happy to hand the decisions over. And just the other night like I was thinking like, you know, maybe I could like, I love this house and it's the only place I've lived in the US but I was like, I could, you know, maybe I could see moving somewhere else. And then, you know, like my brain keeps telling me horrible scenarios and then I worry about it and these don't exist. Like, I was like, "but how am I gonna pack the house up?" Like I couldn't possibly do it. And I'm just like, oh my God. Like I'm getting stressed about something that is not even on the table.

Kristen (35:00): Right. It should be something fun also. Right? Like that should be exciting, you know? And so if if it causes you that much stress, you know, it's not right right now.

Natasha (35:08): Sure. And you know, it's like very few people actually move themselves a hundred percent. You have to pay a moving company and they do it for you. Yes. So it was just, yeah, I think that's been the story of the past few weeks of like my brain just telling me horrible situations for me to stress out about.

Kristen (35:26): Yeah. And going through a period of wanting to have people around but not wanting to socialize, it's totally understandable. You don't want to be that person who's like a bummer.

Natasha (35:40): Right. Somebody came by to pick something up yesterday and um, you know, we were sort of standing on the doorstep chatting and she was like, "you look great". And I was like, "no I don't. I look like an emaciated skeleton". It's like, "I really don't look great. I mean, maybe I don't look as bad as you think a cancer patient should look, but you know, if you could see my insights, they're not feeling great". And I was just actually having maybe like a small realization when you were just talking about, you know, the one thing that I'm not future tripping on and maybe the reason I am future tripping on, like how am I gonna pack up the house when I sell it? Whereas it's like I haven't future tripped on recurrence because I cannot even make head space. Right. To think about that right now. There is no freaking way.

Kristen (36:30): There's not room. No.

Natasha (36:31): No, no. And it was interesting at the um, with radiation yesterday, they're like, oh, and you'll we'll schedule a follow up mammogram in um, like so many months, like something in 20 whatever next year is 2023. And my first thought was like, first of all, like how are you gonna squish this poor surgically like mangled boob into a mammogram machine? Isn't it gonna hurt? And also, you know, it's back to like one of our main themes. It's like, this didn't show up in a mammogram in the first place.

Kristen (36:59): So why the hell am I getting mammograms?

Natasha (37:01): Exactly.

Kristen (37:04): I think that when you're going through these treatments too, like of course there's no room. All you, you're like thinking, okay, I'm going to radiation, this is something new. I'm also back to work, this is something I, it's a whole different thing. And with going back to work and your routine and not having that same person at home.

(37:25): Yeah. Yeah.

(37:26): You just gotta say, Pippa is that person.

Natasha (37:28): And I actually, um, I just signed up for an anxiety work group or something that starts in about a week. Again, it's on Zoom, which is, I don't know, we'll see how it goes. As my physical body heals over the next few years, I think I'm more worried about my sort of emotional and psychological state.

Kristen (37:50): Sure. I'm glad you're taking care of it. I'm glad that you're realizing it, you know, and not just pushing it down.

Natasha (37:57): Yeah. I've actually had some tears the past week or so, which is the first time maybe even since my ex walked out. Like I was, stuck in anger. The whole anger and denial felt much, much longer than actually getting into, um, the sadness. But I took the dog for a walk yesterday and I was like, I'm crying, just walking the dog. And it felt, I mean it's kind of embarrassing to walk the streets of San Francisco in tears, but, you know, it's not something that anybody hasn't seen before. But it was, yeah. I think it's time to really, you know, as sort of the acuteness of my treatment backs off really looking at the emotional damage, which I think is, you know, unfortunately just that's I think the hardest to heal cuz we're on our own healing that in a way there's no,

Kristen (38:49): Yeah.

Natasha (38:49): cookbook of like, do this, do that.

(38:51): Right.

(38:52): You know, it's just one day at a time and then you relapse and you have a day in bed and you cry and you know, then you pick yourself up and keep doing it.

Kristen (38:59): Well and that's where you have to give yourself a lot of grace.

Natasha (39:02): Yeah. Do you have anything left to be done to you or are you just in like surveillance now?

Kristen (39:09): I'm just in surveillance.

(39:11): Wow.

(39:11): I'm, I'm just, I'm taking my hormone blockers.

(39:13): uhhuh

(39:14): And so yeah, I um, I saw my surgeon a few weeks ago, um, my oncology surgeon and then I saw Dr. Ali last week. Yeah, last Monday. And both of them said, you're healthy.

(39:29): Wow.

(39:30): So, yeah, Dr. Ali, she said, um, "you look really healthy". I said, "well, I feel healthy". And she said, "well, cuz you are."

Natasha (39:37): That's great. Wow. It's so funny how, you know, how those little half sentences from the, the doctors can be so meaningful.

Kristen (39:45): Completely.

Natasha (39:46): Just holding onto them. Yeah.

Kristen (39:49): Well, pretty much we've documented where we are and I think the next time that we talk you'll probably be in the middle of radiation.

(39:56): Yeah.

(39:57): If you're okay with that.

Natasha (39:59): That would be great.

Kristen (40:01): Okay. Well I think that like our goal is for you to gain two pounds a week.

Natasha (40:07): Yeah. We'll try. I have to go in and eat now.

Kristen (40:09): Okay. Go eat. Go eat.

(40:11): Okay.

(40:11): Go eat something big.

(40:12): I will do.

(40:13): Okay. Love you. I'll talk to you later.

Natasha (40:15): Thanks. Bye.

Kristen (40:17): Bye.

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