A Breast Cancer Diary by Kathleen Moss

October 02, 2024 When Triple Negative Feels Toxic

In earlier episodes with stories like Marquita's we've seen ways that Triple Negative Breast Cancer can be "not so bad" but in younger patients it's often the reverse. Meryl Opsal is my guest today, and she's got a harder story to tell about the effects of her immunotherapy. Meryl is a powerful woman, and if there ever was a cancer fighter she is my image of one. She and her family have been through so much, and they are still going through it, but they are managing well together. Stay tuned for a follow up episode in which we will talk more about the new immunotherapy drug called Keytruda that's showing a lot of promise for triple negative patients.

Watch on YouTube: https://youtu.be/agbu6QjDiXs

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https://liberapay.com/abreastcancerdiary/

Links from today's episode:

Meryl's Instagram Accounts: @merymeryl; @thestoryofcaptaincharlotte; and @rompandrollick

Meryl's business email address for parent coaching: [email protected]

Meryl's website: https://www.rompandrollick.com/

Transcript:

Kathleen:

Today's guest is Meryl Opsal. She's a mom of four and eight year old kids, an education consultant in early childhood education and a podcaster that I listen to every week as a bedtime story. Her podcast is a delightful children's adventure story that just started around the same time that my podcast started called The Story of Captain Charlotte, and I highly recommend it, whether you're an adult or a kid! Her story grabbed me on Instagram recently, and she's my first guest that is really. pretty much a stranger to me. I haven't gotten to know her very much. I trust her because she is an amazing storyteller and a very vulnerable person with regard to her cancer journey. And she has an important story to tell. I asked her on to talk about her experience as a triple negative survivor. She has endured triple negative breast cancer, ductal breast cancer and was diagnosed with stage 3C, which means that she had extensive lymph node involvement and she's been through the ringer with her treatment. And that's the main story that she has to share today. So Meryl, welcome. I wanted to ask you about your experience with the drug Keytruda, which is a new immunotherapy drug that has really been full of promise and hope for oncologists across the world. You have a little bit different story to tell about it and I wanted to allow you to do that here. So please tell us a little bit about your diagnosis and your treatment and, and how that went for you.

Meryl:

Okay. I can definitely do that. And first I just want to say thank you so much for having me. I really appreciate it. I'm on a mission of education, advocacy, and demystification of breast cancer. And so I just really appreciate the platform to spread the word a little bit more. So really my diagnosis starts with my sister's diagnosis because my sister was diagnosed with triple negative breast cancer in February of 2023, which was a huge shock to my family because we really had no history that we knew of, of any kind of breast or gynecological cancers. And I went to visit her and help support her through some of her treatment. She's on the East Coast. She said, Meryl, you really have to get a mammogram. And I said, “don't worry. I just turned 40. I am going to see my doctor next week. I'm definitely going to get a mammogram. It's happening.”

I went to see my doctor and she did a full exam. I even remember that while she was feeling my left axilla, she was manually, you know, feeling, making sure everything was okay, and I was talking to her and I said, my sister was just diagnosed with breast cancer. She said, “oh my gosh, I'm so sorry. Definitely going to get you in for that mammogram.” I only mentioned that because she didn't feel anything and I wanted to just point that out because of how quick some cancers can progress. Some breast cancers, some breast cancers can be very slow and you have time and mine was not like that. Mine was not like that at all. It was like a bomb went off in my body because I had this mammogram and the mammagram was two weeks later, and there was already cancer in my left axilla, as well as in my breast, and I got a letter a couple days after my mammogram saying that I had dense breasts. Now, I know that there's a new law that's around the whole country that you'll be notified if you have dead breasts. In California, that law already existed at the time, and it said, “please call us for a follow up ultrasound.” So I called the ultrasound place, and I said, I'd like to make an appointment. I got this letter, and they said the next available appointment is six weeks from now. And I said, oh, I was really nervous because of my sister, and I said, “I know it just says dense breasts, but I really, is there anything you can do?” And the woman on the phone said, “don't worry, if it needs to be stat, your doctor has the mammogram report, she'll call us and it'll be stat if it needs to be stat” and she said, “but just make sure that your doctor sends the ultrasound order because we haven't gotten it yet.” So, I kind of forgot about it. I was very busy recording for The Story of Captain Charlotte and running my business and I kind of, you know, moved on with my life. And I mean, I did notice that my left breast was starting to get bigger than my right. I googled it, you know, it could be hormonal, whatever. I kind of wrote it off. I kept reassuring myself saying the doctor has the mammogram report—she would tell me if it needed to be stat and I just sort of wrote it off and just said it's in my head “There's no way. I also have breast cancer right now. That would be crazy.”

So it comes to two days before my ultrasound I call and they say “oh no, we haven't gotten the report yet.” “Oh, that's surprising.” I called my doctor and they said, “Oh yeah, we'll send it right away.” So I go in for the ultrasound, and the most peculiar thing happened—they only took images of my armpit. It was really confusing, seeing as how I had dense breasts. And, uh, I've had two babies. I know what it looks like when they're measuring things on the ultrasound, you know, the tech can't say anything, but I'm seeing black spots, I'm seeing her measure them, so I just get this pit in my stomach. And on the way home I got a call and she said, come back, the ultra, the uh, radiologist wants images of your breast as well. And that's when I went and got my husband because I knew it was about to go down, went back, and got the ultrasound. quickly after that, got the biopsies and the staging and all of that. All of that moved quickly, but I actually really have no evidence that my doctor ever looked at the mammogram report. I don't know that she ever looked at it. It's really, really upsetting. I cannot, unfortunately, sue her for malpractice because the cancer at the point of the mammogram was already multifocal, meaning it was already stage 2, and so my treatment options wouldn't have changed.

Wow.

M: It's just this really unfortunate thing. I probably would have been staged. 2A, 2B, and instead I ended up being staged at 3C, which the law says, oh, well, your treatment options were the same, so there's no case. But just the lived experience of being staged 3C was so terrifying and so scary and I just really lost trust in medical providers at that point. And I think that's a good thing. Actually, I think people should have a very healthy skepticism that their providers are going to do anything for them that you expect them to do, even the bare minimum. And I think most people who have been through breast cancer have come to understand that—that we really need to be our own advocates. If there's a test, you need to make sure you get the results yourself. You look at the report yourself. You know, if a prescription needs to get called in. It's, you know, it might not happen. You need to follow up. You need to follow up always yourself. So that was the first time I really learned that lesson. Um, let me just have a sip of water—I need to constantly drink water in order to talk.

So the gold standard of treatment for triple negative breast cancer is called Keynote 522, it includes 12, uh, 12 doses of carbotaxol and then four of adreomycin and taxotere, which is also known as the red devil. And then through all of that—that's about six months. And then continuing for six months after that, every three weeks, you're supposed to get an infusion of Keytruda, which is a very new drug. It's an immunotherapy drug. And so I started chemotherapy in July.

I was able to continue running my business. I ran a very popular and successful parent and me business. So I taught classes to babies. Um, they came with their parents and toddlers came with their parents and it was my dream come true and it was beautiful and amazing and I loved every moment of it. It was very, very physical, very physically taxing. I was able to do it through the carbo taxol portion of the chemotherapy but then when it came to the red devil, the Adreomycin, I had to stop.

So around November of 2023, I noticed, (I noticed!) I was getting extreme like 10 out of 10 pain in my parroted salivary glands every time I ate. And. When I say 10 out of 10, I do not say that lightly. I, I gave birth to my second child completely naturally, and this was beyond. Quite a bit beyond. The amount of pain—I was blacking out. I was going into cold sweats. It was really, really, really painful. So I brought it to my oncologist. “What's going on with my salivary glands? Every time I eat, this is so weird.”

And anyone who's been through chemo knows the line. It's chemo. It's chemo. Everything is chemo. Everything is chemo. Oh, it's chemo. It's chemo. It's chemo. I've always shared my breast cancer story on my Instagram and I get a lot of really impressive helpful feedback from my followers and one of my followers has an autoimmune disorder called Sjogren's and she said it sounds like you might have Sjogren's. I had never heard of that before and so I asked my oncologist I said one of my friends said that it might be Sjogren's and she literally said to me “I don't know why we're talking about Sjogren's right now!” and we just moved on and she just swept it under the rug and then I finished my chemotherapy. December 26th was my last one and I had one infusion that was just Keytruda. And when you get just Keytruda, you don't get any of the premeds that you get with the chemotherapy including a steroid. Usually when you get chemotherapy you have a steroid as a pre-med I didn't know at the time that that steroid pre-med was protecting me from the Keytruda in a lot of ways even though it was still hurting me. When I had this one infusion, I think it was like January 16th—it’s funny how we remember all these dates because they're all so important. Honestly like getting hit by a truck. Related to Sjogren's, um, in my body just went completely off the rails. I, within a day, stopped making tears, stopped making snot, stopped making saliva. There's a mucus membrane lining up your, your Your bladder that protects you from your, the, um, the acid, the acidic nature of your urine from burning your bladder, that went away. And so, all of these things happened to me, and then a week later, I had my double mastectomy. So I was very, I did not know what was happening to my body, and then I had the surgery. I was recovering from the surgery at my parents house and my parents are both in the medical field. And so we had a lot of time to talk about what was happening to me, not just with my double mastectomy—they took great care of me for that, but also all these symptoms, like I wasn't able to eat all these foods, I couldn't breathe. You need, anyone who's taken biology knows, you need a wet mucous membrane to breathe. I was having trouble breathing. There were multiple nights where I thought, “I don't know if I'm going to wake up because I can't breathe through my nose and I cannot breathe through my mouth because my mouth is so dry” and my dad did some research and he was the one that pulled up a case report saying that there's evidence of people getting Sjogren's from a similar drug to Keytruda, another immunotherapy drug. And so, we printed out, we found more case reports, we printed it all out, and brought it to my oncologist. I brought my mom with me, and we, we brought it to my oncologist and I said, This is what's happening to me. This is what's happening. And she went, “Huh, how about that? Immunotherapy does the weirdest things.” So that was the second time I learned that you really cannot trust your providers to do even the most basic things. Even the drugs that they prescribe that they're supposed to be experts on, they may not know about. And it's not advisable to Google a lot of things around breast cancer, but there are some things where you really do have to—you have to Google, you have to be informed. And I really wish that I had when my, like in November when the symptoms first happened in my parotid salivary glands, that I had really started googling that and pushed her a little harder to send me to a rheumatologist. So luckily now I'm under the care of quite a few doctors. I have a special eye doctor, I have a few rheumatologists, and I'm on a whole bunch of drugs. But unfortunately it seems like a lot of the symptoms are permanent. So what happened to me is called an immune related adverse event and when you're talking about immune related adverse events, uh, permanent is described as symptoms that last over a year. So, my symptoms are going to be permanent in that respect, but also probably permanent in a more colloquial respect, like probably forever. It is possible that my body will heal, but it's such a new drug, and there's really no reports of this resolving. Very, very few people have gotten Sjogren's from Keytruda. I actually have never met anybody that's gotten Sjogren's from Keytruda. It's just these case reports that I've read. It's much more common for people to have issues with their thyroid, their kidney, their pituitary, um, other types of autoimmune issues. So, I really don't know what the future holds in that respect. Yeah, so that's, that's pretty much how I was diagnosed and kind of what was going on with the Keytruda.

K: Did your Sjogren’s affect the way that you healed from your mastectomy?

Yeah, oh yeah, I mean, ever since the first symptoms of the Sjogren's, I have not been allowed to have just breast cancer. I have breast cancer and a serious autoimmune disorder. And especially at that time when I didn't know what was happening to me, I didn't know how to eat. I've had to completely relearn how to eat because, not like literally how to eat, but the things that I can put into my body and successfully chew and swallow. Because I have such a small amount of saliva. All my favorite foods, all the things I was used to eating, uh, my ability to casually snack, you know, all of these things completely went out the window. And after surgery, it's very important to nourish yourself with healthy foods, to eat, to make sure you're eating enough in the day, even if you're not feeling good and that was a struggle. That was a real struggle because I also wasn't able to cook for myself. I was at my parents house. We already eat very different diets because my parents eat meat. I don't eat meat. And they're kind of like, “I don't know what to do. What do we cook for you?” already and then there was this also surprise thing, which is like all these things they were trying to make for me. And then I literally couldn't eat it. It was so frustrating. And the bladder pain was really off the charts because I did not know what was going on with me at all. And it was to the point where I was having trouble walking. That's how much it hurt. And really, I should have really just been focused on the intense pain and discomfort that I was going through from my double mastectomy, which was almost a side note to this mystery thing that was happening to my body. So, yeah, I mean, absolutely. Absolutely.

K: Your actual wounds, um, and incisions did heal pretty well though. They didn't have trouble healing?

M: Well, I actually did have some trouble healing because the treatment for this type of immune related adverse event is prednisone which can delay wound healing. And so when I went to see my oncologist with those case reports saying this is what's going on with me and what I need is what it says in there is prednisone, so you have to write prednisone a prescription for prednisone for me. And she said, okay. My plastic surgeon found out and he said, you have to go off the prednisone immediately. And it had already at that point caused some wound healing and I needed a couple extra stitches in one spot. It, it, yeah, it caused a little bit of a delay, but everything eventually did heal up fine.

Did you get, um, implants or did you get a flat closure after a mastectomy?

So I currently have tissue expanders. And, um, planning on having them exchanged for implants in January.

K: And how's that gone? Has your body responded okay to the expanders?

Yeah. Yeah, I would say so. I mean, expanders are notorious for being uncomfortable, and I can confirm that that is true. They are uncomfortable. However, most of my breasts are numb. So, the discomfort is probably mitigated by that a little bit, because I can't feel a lot in that area of my body. Um, but yeah, overall it's been, it's been okay. It's been okay. I am very much looking forward to the exchange surgery though because I've heard the implants are a lot softer and they'll be more comfortable. So I'm, I'm really looking forward to that.

K: And when is that? Is that pretty soon?

That's in January. So, um, after I finished chemotherapy and my surgery, I had 29 rounds of radiation and there's some sort of complicated math problem about how quickly the radiation leaves your body and they figure out exactly when you're able to have surgery and it's usually around nine months after radiation you can have surgery. So that's why I have to wait until January for that exchange surgery.

And how was the experience of radiation for you?

M: Um, radiation was hard. Radiation is kind of, kind of a mindfuck because unlike chemotherapy where it's very concrete, there's a medicine, you're seeing it go into your vein, you feel it. Radiation. It's like, it's invisible, you know, it's invisible, but in your mind, you're like, it's radiation. Like, know, you think of Hiroshima or something like it's, it freaks you out. And then there's also the aspect of it where you're on a table, exposed, alone, in a room. And something I did not know about radiation, that I know now, is that they need you to be in the exact same position every single time because of, they have it like all mapped out on computers and they need it all lined up perfectly. It's all very, very precise. Which is good, because we don't want our heart or our lungs radiated. But one of the ways in which they keep you in the same place is they lock, or at least I should say for me, because I know different places do it different ways, but for me, they created this mold of my mouth and my neck, and very, very tight to my mouth and my neck. And then that's clipped, locked onto the table. So it's literally this like mesh, hard plastic mask that locks your head onto the table. So you're exposed, alone, locked to the table, unable to move. It's extremely vulnerable. It's extremely vulnerable and you have to do it every single day. So it's just this unrelenting schedule. Your entire life is overtaken by this schedule of radiation. And for me, I didn't really see anything happening for a while. And then when it got to the last 10 days, I would say of radiation, the skin in my armpit started to give up, say, see ya, all fell off. I had third degree burns in my armpit and it was really painful. The armpit is a hard place to have burns because it's really, really difficult to bandage, really, really difficult to keep it still. So that was very, very painful. And then when I was there, I would, I would keep my arm down all the time. But then when I was there, I had to lift it up and stretch the skin and it was so painful. And then to know that I was getting more, it was really hard. It was really, really hard to get through. Um, but I got through it and I got to ring the bell and that felt so good. That was the end of my active treatment. It was such a relief to be done.

How long was your, the span of your treatment? When did it start and when did it end?

I had my first chemotherapy at the end of July in 2023. And then I had my last radiation in Early May. So, that's how long it was.

Thank you for describing that. I think for me in some of the procedures that I went through, especially the different biopsies, just knowing what to expect was the main thing. I don't care how gruesome it is. I just want to know what they're going to do to me and what it's going to feel like. So I really appreciate you reliving that for the sake of the listener that is brand new and hasn't gone through that yet. I know it's hard to hear, but it's better than not knowing in my, in my way of thinking. So thank you for that. I want to talk to you a little bit about your medical system. I know your parents are both medical practitioners and probably advised you about the best place to go in the first place and whether or not to change, get second opinions, get a different provider. Did you switch providers ever, or did you feel like you were already in the best spot to begin with?

M: So, when I was getting diagnosed, I was on the phone with my sister, who was in bed recovering from chemotherapy, and we had a spreadsheet. And we had a plan. If I was diagnosed, which it was looking very likely that I would be, I would have the numbers of who to call right there, ready to go. And my parents actually didn't advise me in this area, because they're actually, they're actually not practitioners in, in my area. My mom is retired. She used to work in clinical auditing at Johnson and Johnson. So she knows a lot about medications and how they work in the body. And my dad used to be a pediatrician and now he works for an insurance company doing imaging requests. So he knows a lot about imaging, which is good. So those have all, those have come in handy. They've come in handy, but they don't, we're not actually from this area. So we, we don't know the, the medical system here all that well. So my sister did a lot of research for me and we identified two of the top oncologists in the area and I met with both of them. One of them was out of UCLA. I'm in Los Angeles. So one of them was out of UCLA and the other one was out of City of Hope. In, it's actually pronounced Doherty, but I'll say Duarte because I really don't like saying Doherty and that's their main campus, which I'm very lucky that I live about 15 minutes away from the main campus of City of Hope. K:

Oh, wow. Yeah.

M: So with both of those providers and I eventually decided to go with City of Hope. And the reason for that is because it's kind of a one stop shop. I'm really glad that I actually made that decision because I've heard from other friends who, maybe don't live in a metropolitan area. They have an oncologist, they have to go find a plastic surgeon. For me with city of hope, they know how to do breast cancer. You get on the ride and you just go, I didn't have to make any appointments for myself. I didn't have to think, when should I schedule an appointment with my plastic surgeon? It literally just popped up. They just make the appointments for you. They know exactly the timing, how to do it. And you just have to kind of give yourself over to it. Of course, always making sure things happen. You know, we learned that lesson, right? We have to make sure things are happening, but it's to a large extent, city of hope takes care of it. And the other thing I really liked about City of Hope is that they have their own, um, ED emergency department. And so you don't have to go to just your local hospital and then explain to them, I have cancer. I'm going through chemotherapy, blah, blah, blah. And they don't know what to do with you.

At City of Hope I did have to do this twice. I was admitted twice during, during chemotherapy. I was admitted to the ED twice. Um, and that was really, really great to be able to go, they have your whole history, they can contact all the doctors very easily, and they obviously know exactly what to do in the case of neutropenic fever, which was one of the reasons why I was admitted, and the other time was from bacterial pneumonia. Um, so they know just how to treat patients who are, who have a compromised immune system and have these types of problems. So I was really happy. I never, I never switched any of my doctors. I was really, really happy with all of them. I mean, I've been very lucky. I think it's a very different situation for people like I said, who don't live in metropolitan areas. Like my sister, my sister lives in Western Massachusetts and she had to drive three hours every single week for chemotherapy to go to Dana Farber in Boston because she just didn't have any good options near her. She wanted the best, you know, she wanted the best treatment obviously. And so she was just driving all the time, all the time, three hours back and forth, both ways, three hours, one way, three hours, the other way to get chemotherapy. I feel very, very lucky that I live so close to such a, a good cancer center.

Yeah, that's amazing. And City of Hope is exclusively cancer. It's a cancer center only, right?

Yeah, that's right.

K: Okay. So how did you deal with the shoguns then? Did you have to go outside of City of Hope to get help with that?

Yeah. And that is one of my sticking, kind of problems or sticking points that I spoke with my oncologist about recently. City of Hope does not have a good, I would say, rheumatology department. And I really feel any quote unquote comprehensive cancer center that is giving immunotherapy should have a rheumatology department/group on site, right? Because a lot of people have immune related adverse events and they need a rheumatologist that is familiar with both oncology and rheumatology. so I was sent to UCLA. They have a really good rheumatology department and so my quote unquote local rheumatologist is out of UCLA. My special eye doctor is out of UCLA So they can all talk to each other. Now I have a neurologist. Um, and so they're, they're, they're all in the same system and they can collaborate really easily. But that actually wasn't good enough for me because my local rheumatologist had never met anybody who's had an immune related adverse event from immunotherapy and she really did not know what to do with me and she was treating me more like a primary Sjogren's patient which most people who get autoimmune disorders It comes on very slowly over years and then they start to notice something's off and then they'll maybe go see their rheumatologist a couple years in to having their first whispers of a symptom but for me, that's not what happened. And So she, she was treating it like I was having a Sjogren's flare, and that's just not exactly what was happening to my body. And so, I became aware, through the Sjogren's expert at UCLA, I became aware of a doctor, Dr. Katsumoto, out of Stanford and Stanford has an interdisciplinary group that is oncology-rheumatology. It's one of the only ones in the country, and I was able to make a telehealth appointment with Dr. Katsumoto. I had to wait, I think, four months for the appointment. But when I did eventually get to see her, she was the one that finally was able to help me because this is what she does all day. She either helps with patients who have autoimmune disorders and are diagnosed with cancer or people like me who acquire autoimmune disorders from their cancer treatment. So she knew exactly what to do to help me, and I feel very, very lucky that I was able to be treated by her. K:

Yeah. Do you do online appointments mainly then?

M: Yeahm she’s at Stanford, so that's, um, that's upstate. It's like near to San Francisco, I believe. So, yeah, we do telehealth appointments only.

Have you ever met her in person or is it always been telehealth? M:

No, I've never met I've only had two telehealth appointments with her. Yeah, K:

Oh, that's so great that you could access her that way so easily.

Yes, very, very lucky.

K: Well, before I want to ask you about your family and your kids, but before we move on to that, I want to ask, it sounds like you have stated already very clearly that your main regrets in your story have been that you didn't follow your intuition and start advocating for yourself a little sooner, both with your screening and with the Sjogren's incident, is there anything else that you want other brand new cancer patients to know about that you wish you had known?

M: Um, well, I, when I was first diagnosed, I was really, really hoping that I would continue, be able to continue to work. Cause like I mentioned, my business was so important to me and I had many clients that were dependent on me and so I wish that I had stopped working sooner because what ended up happening is that I basically, um, worked myself into the hospital. I, like, I had mentioned that I, I was admitted with neutropenic fever and I really believe that was because I worked too much. I was trying to do too much. I was trying to keep up normal, you know, keep going, and it was not appropriate. And that's kind of been a theme in my life, where I sort of work myself into the ground or try to do too much. It's a lesson I've really had to learn, is to slow down when you need to. You can circle back when it's all over, but, you know, when you're, especially when you're going through chemotherapy, you really, really, really need to slow down. I did not take it as seriously as I should have. I mean, I knew I would be nauseous, I knew I would lose my hair, I knew all of that, but I didn't realize, I didn't realize how close to the edge it was gonna take me. Twice. That was a surprise to me. Um, so yeah, that would be definitely another thing to note is to slow down, to take the chemotherapy serious and you're not going to be able to continue your normal schedule that you need to kind of ask your family and friends for support to, to do even really honestly, the most basic things.

K: Do you feel like that was informed by the stories of others or seeing others with cancer on Instagram? Or did you have any way of pacing yourself that you were kind of measuring against someone else?

M: Um, no, not really. I mean, my sister was, my sister was going through chemotherapy. We had some overlap at the same time, but she lives very far away. I did, so I didn't really in my face get to see exactly what she was going through, but I did know that it was hard for her. But she tends to put on a brave face, so I don't think I ever really heard like exactly how hard it was for her. It's really just the pressure I've always put on myself just to do everything. All of it. So much. All the time. That's a big part of my personality is just to always be go, go, go, go, go, and always be doing five things. And, um, it takes, it took chemotherapy to get me to stop, you know, just stop, stop everything, you know.

K: Yeah, I think that's a common personality trait for us. Breast cancer survivors. You hear that type A is, is very common among us. So certainly it was true of me. Yeah,

So interesting.

Did you have any support groups in your life during chemo or after? I was made aware of that resource while I was in chemotherapy. But I wasn't ready to join a support group until I was done with chemotherapy. I felt that I talked to my therapist. I had a therapist. Luckily, I was already in therapy with a trusted therapist. Um, I already had a psychiatrist and a psychologist. I already had the mental health team in place, which was really lucky. but I spoke to my therapist when I was in chemotherapy. She suggested I join a support group. And I told her I'm really not ready yet because I was having such a hard time. Being stage 3C and then the difficulties that I was having with chemotherapy, how it was really, like I mentioned, it was really, really, really hard for me. And I do feel that I came pretty close to honestly dying twice because of it. I felt if I'm in a support group with someone who's like, you know, not staged as high or isn't having as hard of a time or didn't need chemotherapy, that I would have really big feelings about that. and so I waited until I was through chemotherapy and the bitterness was a little bit more resolved. And then I joined a support group and I'm in a support group now, um, through that organization I mentioned and I, it's amazing. I really love it. It's really, really great to be able to hear other people's stories and, you know, You know, provide real time feedback, share, and find that some things that happen to me happen to you too, and I don't feel as alone. people ask questions, and you're able to, you know, provide some insight from things that we've been through, so it makes those experiences feel more valuable, because, oh, I can now tell you about it, and you don't have to feel so alone, or, It doesn't have to be a mystery to you anymore. so yeah, I've really enjoyed being in that support group.

Do you feel like that's the main way that you deal with your trauma or your PTSD from all of this?

Um, no, definitely not. Um, I have a therapist. She helps me a lot. I don't think I've really to really, really do any hard work on the PTSD from it because I still feel I'm so in the middle of it. I still ha this Sjogren's thing is still unfolding. I'm still in the middle of trying to treat it, figure it out, see what's, what's going on with it. Still have so many appointments. And I still have my exchange surgery coming up and who knows what's going to happen with that. So I still, even though I'm done with active treatment, I still feel very much in the middle of, like the trauma is still happening. And so it's kind of hard to process that until you have like a little bit more distance. I think in a couple years I might be able to feel into that a little bit more. My, I would say honestly, my main way of dealing with it is disassociation. I, from the very beginning when I was diagnosed, I have disassociated hard. Um, yes, and it has, it, it, I know my therapist has told me it's an important thing that your nervous system is doing to protect you. You shouldn't be scared of it.

K: It's amazing.

I try to remind myself of that when I'm, when things happen and feel like I should be crying and I'm not because I actually feel nothing. Um, I think what's wrong with me? And I'm no, it's not wrong with me. My nervous system is protecting itself. It's okay, Meryl. You'll cry later about it. Um Yeah, so that's what I've honestly the main way I deal with it and medication.

Thanks for that. Okay. Let's talk a little bit about your family and the dynamics and your kids, how you've sorted through just how to talk to them and love yourself also.

Yeah. When I was diagnosed, my younger son was four and my older son was eight. I would say being a mom of young children and going through the treatments that I went through is probably going through being the hardest thing that I've ever had to do in my life. It's already hard enough to be a mom, and it's already hard enough to be a breast cancer patient in the situation that I was in. But those two things don't really combine well, you know, it's, it was extremely difficult, um, because, and then also just with my, I have a master's degree in early childhood and childhood education. And one of the main things I was focusing on in my classes is how to talk to children in a developmentally appropriate way. All of my work is around, um, developmentally appropriate instruction. I thought very, very deeply about how I was going to talk to them about it and what I was going to let them know. I was very, very purposeful the whole way through. The first thing that I did was I primed them by letting them know that I was having the biopsy. And letting them know that I was going to have a boo boo on my breast and we would have to be careful around it. That was on purpose. I think some people might think, oh, just keep that to yourself. Don't say anything until you're diagnosed. But I did that on purpose because I didn't want the diagnosis to be a huge surprise out of nowhere. I wanted them to kind of know there was something going on so that when I did eventually tell them, they would know that, you know, there was something leading up to this.

I talk to my four year old about it a lot differently than I talk to my eight year old about it. And it's, for parents, it's very much case by case with your kid, where they are developmentally. But my eight year old is, has always been highly verbal, is highly intelligent, and is very, very interested in science. And so, kind of took that, that road with him, the science road, when I was explaining things. So for him, I said I think there might be something wrong or sick inside my breast and they need to take a little sample of it to test it under a microscope and see if it's sick. And then with my four year old, it was, “there's a boo boo and mommy has an owie and we have to be careful with her breasts now.”

And then, um, when I was eventually diagnosed, first thing, I didn't tell my four year old right away, I spoke to my eight year old and I said, “have you ever heard the word cancer before?” And he said, yeah, I have. And I think it's really important to first see what a child already knows, see maybe what misconceptions they have, and then fill in the blanks, you know, kind of go off cause you don't want to overwhelm with information. So kind of just see what, what they already know. And unfortunately there was a mom who had passed away from breast cancer the year before in his school, and so that was his association. That was the basis of his knowledge. Um, but I let him know that not everybody dies from cancer. Um, I let him know, you know, remember when I got that test? It came back that I do have cancer inside my breast. And he said, “okay, well, why don't they just cut it off?” said, “you're so smart. They're going to.” And he went, “what?” And I said, “yeah, you're thinking just like the doctors, not yet, but eventually they are, they're going to take, do surgery to get it out. That's exactly right.” I said, “but the first thing I'm going to do is I'm going to have to take some really yucky medicine—it has a kind of funny side effect.” Because I knew, especially with kids, the main thing that they're really going to focus on is what's concrete, what's right in front of them. And that is that my beautiful long brown hair was about to go away. I said, “it has kind of a funny side effect. And the side effect is that it's going to make all my hair fall out.” But before I had told him I was prepared, I had put a call out on my Instagram to send me photos of beautiful bald women. And I have, and I still have it on my Instagram as a highlight reel. And so I had the highlight reel already of all these beautiful, gorgeous women, bald women, all different shapes and sizes and looks. He was like, Oh my God, really? You're going to lose your hair. And I said that I am going to be a beautiful bald woman. Would you like to see some other beautiful bald women? And he said, yeah, sure. And so we went through the, all the pictures of all these beautiful bald women. And he was like, wow, they look so cool. Like Natalie Portman in V for Vendetta. She's so cool. And yeah, he was, so he was excited. He was like, okay, great. And Halloween was, um, coming up. It was July, but my kids start thinking about Halloween in July. And he said, you could do a really cool Halloween costume with your bald head. And I was like, yeah, that's a great idea. He was excited about that. So that was, that was sort of the first way that I spoke to my eight year old about it. And I also told him in that conversation, really the science, more of the science of cancer, their cells, you know, cells divide. He said, Oh yeah, I know that. And that some are dividing too fast and they're making mistakes. And it's, you know, it's, um, and it's going to make me sick. And, you know, explaining it in that way.

With my four year old, I just told him “mommy's booby is sick. There's something sick inside mommy's booby. And so I have to take yucky medicine. And then I said the same thing about the funny side effect of me losing my hair” and showed him the bald pictures. Um, but if you know any four year olds, you know, it was kind of like, yeah, okay, for five minutes I'm locked in. I get it. And then it's sort of in one ear out the other very egocentric, totally normal for a four year old to not really care what's going on with anybody else except for themselves.

And to some extent that was a benefit, you know, he wasn't really overly concerned with what was going on with me. I was going to chemotherapy while he was at school, so I think it was more the ways in which I changed as a mother that my four year old picked up on. I mean, it was not just picked up on, it was blatant in his face. I was his primary attachment. I've always been a very hands on mother, um, because of my business and my expertise and specialty. I've just always wanted to be that stay at home mom, really in there with my kids emotionally, taking care of their every need. And suddenly was not able to do that. So my four year old picked up on that, and he, over the course of my treatment, experienced quite a regression. I would say now, he is definitely, um, has a bit of a delay with his emotional development. His emotions, he's five now and he's emotionally much more like a three and a half or a four year old. When people go through trauma, sometimes they can get stuck, you know. In their developmental phase with children, especially we see that, um, and I think that's what's happened to him is he's a little stuck at three, three and a half, four, and we're going to take this year to really try to heal and get back to normal.

Yes, and then my eight year old, um, with each different phase, I didn't tell him “first I'm gonna have chemo, then I'm gonna have surgery,” you know, I didn't go through all the steps, it was what was present, what was in the moment, what was happening in the moment, and then I waited to tell them about, I was really nervous about the surgery, cause they're very physical, you know, two boys are always wrestling and they always want to jump on me or have me pick them up or carry them and all this stuff. And I was really, really nervous about them hurting me after my surgery, which is why I went to my parents house immediately post op. And I was at my parents house for 10 days. It's the longest I've been away from my kids. It was really, really hard to be away. And I'm very, very thankful for my husband for stepping up and just solo parenting for 10 days. And once, once I got my drains out, I felt like I could be around my kids. It was when the drains were in that I felt they could pull it by accident or, you know, make it pop. And you know, all this kind of gross stuff that we do not want to happen. So once my drains were out, I came home and I had told them before I left that I was going to have surgery on my breasts and that they were going to be really painful and tender for a while, and we practiced safe ways to hug me. So with my four year old and my eight year old, I got on the floor and I said, okay, so imagine you can't touch here. How can you hug mom? And Sidney, my younger one, went around the back and hugged me from behind. We practiced side hugs. I said, when we read at night, you can't sit in my lap, but you could sit and lean on my arm. Um, and we practiced all the different safe ways to touch me and they were very good when I came home, they remembered, they, they took really, really good care of me and were really, really careful. And I mean, with breast cancer, nobody wants breast cancer. Nobody wants to have to deal with any of these things, but what an amazing lesson in taking care of someone you love. I wish they didn't learn that lesson right now, you know, maybe in a few years. But they did, and they, they took amazing care of me, and they were really, really careful, and I think it was that prep work that we did that was so helpful in the moment.

When I was going through radiation, I honestly didn't even mention it to my younger son because it's so abstract. I really don't think he would understand. I explained it to my older son again, from the science point of view, because he was interested in knowing about that. And then I let them both know when I was done with active treatment that I was all done and that I was, I was all better. You know, I was, uh, I, I didn't mention this before, but, um, after my surgery, when I got my pathology back, I did have a complete response to the chemotherapy. And so after my radiation, I was able to tell my kids that I was cancer free and, you know, we were all very happy and excited about that. But there's definitely been, there's been a, there's a long lasting stain, I would say, on the emotional life of my family because of it, and we're still, we're still recovering from it. still yeah. Yeah, especially my younger son.

K: I can see you as you're talking. I can see like listeners in the future coming to you for support and advice in this area. Have you thought about doing work with cancer patients around parenting?

M: Yes, absolutely. I have thought of that, so I mentioned that I was not able to continue teaching my classes through my company romp and rollick and I've been the whole time in treatment since then thinking about what I want to do with that business. And I have in the past I've done quite a bit of consulting work in different areas. Some of it has been with families, supporting them in different ways. And so I would just add support through cancer diagnosis to one of the other ways I help families with currently, which is like behavior issues, feeding, education issues, sleep issues, you know, all those kind of sticky areas with early childhood. And yeah, I'll just add cancer diagnosis to that list for sure. I'm, I'm available for that. Yeah, I'm, I'm already available for that, that support.

Cool. Yeah. I can see that you would have people lining up for that because that seems like something that is very needed in our community.

M: I think so because um, you know when you're when you're a parent you're not given a manual on how to have kids, you know it's this crazy thing that everyone talks about—you just go home with a baby and they're like good luck! For all of the quote unquote normal things that parents go through there's you know There's huge amounts of information online now. There's people who are selling their courses on sleep training, but then there's also Facebook groups and Instagram content providers that talk about all these different normal, quote unquote, normal parenting things. When it comes to parenting through chronic illness or parenting through something like a cancer diagnosis, there's a lot less information.

I had mentioned before I had a really hard time with chemotherapy. It was extremely hard on my body. And I also really tried to maintain normal. And I think that that's really important as a parent. And that's one of the hardest things about having a parent with cancer, being a parent with cancer is that you don't, you want this to be an adult problem, not a kid problem. So they really shouldn't see all the suffering. They don't need to hear you complain that you're nauseous. They don't, they really, it should not be, they're busy being kids. Don't put it on them. They don't need to know. But unfortunately, sometimes when you literally cannot eat, they're going to notice. So there was a day at dinner, Where I could not eat what my husband made, there was just no way that was going to happen. I was so nauseous. So he made me some oatmeal and I was even having trouble eating that. So, but I wanted to sit with my family at dinner, you know, trying to maintain normal. You know, that's when we, my every day we have dinner together. It's really important to me. Talk about our days. Was sitting there trying so hard to eat the oatmeal. And my eight year old came up to me and he put his arm around me and he said, “Mom, It's okay. Just eat a little bit. You're not gonna die.” It just broke my heart. Um, because he was so worried about me, obviously. Um, Thinking that, you know, if I don't eat, I'm going to die. Cause I did lose a lot of weight and I was, I was not looking good. And I had already at that point been in the hospital once. And just to hear how worried he was for me, this is when I was doing the red devil. So at that point I decided that I was, after my infusions, I was going to be at my parents house for my worst days. So, um, from then on for the, I think the last three infusions I went to my parents house for about three nights during the, the worst days because I just didn't, I, I just had a long conversation with my husband and I thought pros and cons, mom's gone—that's really hard, but you don't have to see me thinking that I'm about to die. That's probably better. Um, and then for my husband, I'm not going to be here, but I'm not going to help anyway. I'm a patient at that point. You would have to take care of me. So how about I just go to my parents house, they take care of me, and then you, instead of having to take care of my kids and me, you can just take care of the kids. Um, and that would be advice that I would give to any parent. If you have a support system nearby, and you're able to step away during your hardest days of chemotherapy, it seems unthinkable to parents to purposefully miss time with your kids, especially when you're going through something like this and you might be thinking about your mortality a lot and how much time do I really have with my kids, but it is really important for them not to see us so sick because they don't understand that you have to go through this really hard period to be better. You know, they just think you're really sick, you're gonna die. You know, it's so scary. It's so so scary and so that is what I did for the rest of my chemotherapy and like I said, that's what I did after my surgery and I wish I could do that after my next surgery, but unfortunately, that's not available for me anymore because this summer my mom was diagnosed with ovarian cancer And so she can't be my caretaker anymore because you know, she's, she's going through her own things. So I'm gonna have to figure out something else for January for when I have my extreme surgery. That's something that I'm talking to my husband about right now is, what are we going to do about that? Who's going to take care of me?

K: And that reminds me to ask you about the study that you and your family have learned about and entered yourselves into. Can you talk a little bit about that?

M: Yeah. So I had a meeting with the genetic counselor at City of Hope and she was flummoxed by me and my sister having both having triple negative breast cancer. We were both tested and have absolutely no genetic markers for predisposition to cancer. And my genetic counselor has suggested that I get my RNA tested which I really can't speak on I don't understand I haven't really googled it yet, but I recently gave a blood sample for that. She said sometimes we can find things in the RNA. So I'll be interested to see about that and then I mentioned to her, you know, since I had first made the appointment and did all my paperwork between that time and the appointment, my mom was diagnosed with ovarian cancer. So I let her know and she said, Oh, well, um, there is a study out of the university of Washington. Um, I wish I knew the doctor's name, but it's the same doctor who identified the BRCA1 genes. She’s looking for more genes. And so families that have a history of at least three people who have breast or gynecological cancers, they can submit their blood and get the whole genotype and they keep it on file and they basically use it to try to identify new genes. And I think she called it the mystery family study, which is kind of a cool name. And so my sister and my mom both agreed. And so we're all submitting our blood samples and the genetic counselor at City of Hope said to me, unfortunately I can't tell you why you've got cancer now, but if you call me back every two years, I bet over the next 10 years, I'll be able to tell you why. So I thought that was really interesting that, you know, they're, they're identifying new genes all the time. And I, it would be so cool if my family was able to help, to help with that. Because it's really, it was especially when it was just me and my sister being diagnosed five months apart. It, it was so confusing. It is still like, so confusing. Like, why is this happening? We have no history of breast cancer. Is it environmental? Is it genetic? And they just don't have the gene yet. And it, it would be really, really great to know why.

K: Yeah. Well, we've reached the end of our hour, and I wish that I could ask you a few more questions, but I'm going to keep it at that. But I definitely want to hear all of your handles. I know you have at least three Instagram accounts, just like I do. And I don't know if you want to share all of them, but I enjoy all three of them personally.

M: Thank you so much. So, um, I have my own podcast, as you mentioned, it's called The Story of Captain Charlotte. It's a nautical adventure series that's not just for kids, a lot of adults enjoy it too. And you can find that anywhere where you find your podcasts, The Story of Captain Charlotte. You can follow us on Instagram at @TheStoryofCaptainCharlotte. I also have my personal Instagram where I share my all of the information about cancer and my Sjogren's, and that's at @MeryMeryl; then I have my business Instagram, at @RompAndRollick, and that one I'm not very active on right now. I'm still, like I said, figuring out what I'm going to do with that business. Um, but if you go on there, you will see some, a lot of very, very beautiful photos of children enjoying sensory experiences and child directed art and story time. And it's a beautiful Instagram to look at. And hopefully you'll see more there soon. K:

Is Instagram the main place that you connect with people?

Yeah. Instagram is. Yeah.

K: Cool. Well, thank you, Meryl, for being such an open hearted storyteller and sharing so much of the hard parts of your story. It's really important to me to tell different sides, even though, as you've said, Sjogrens is a very unusual side effect of keytruda, I think your story is so important and. I'm so glad that you were willing to share it here.

Thank you so much for having me.

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