Parenting Through Cancer with Rachel Lounder
0:00:00 Alyssa
You're listening to Voices of Your Village, and today I am hanging out with our very own Rachel Lounder. We got to chat about what it was like for her receiving stage four cancer diagnosis when Nora was just about to turn two, and parenting through it, and even now today, seven and a half years later, eight years later, what it looks like and how it shows up for her. If you know anyone who has received a cancer diagnosis, if you have received a cancer diagnosis, I hope this is helpful. We talk about things that were helpful for her, things that weren't helpful for her, and how her journey on the emotional side of this has ebbed and flowed and evolved. I'm so grateful that Rach is now cancer -free and count every day as a blessing that we get to have her. She is also the co -author of my upcoming book, Big Kids, Bigger Feelings, publishing in September. I'm so excited to get to do life with her and to share this conversation with y 'all. All right, folks, let's dive in.
00:01:20 Alyssa
Hey there, I'm Alyssa Blask Campbell. I'm a mom with a master's degree in early childhood education and co -creator of the Collaborative Emotion Processing Method. I'm here to walk alongside you through the messy, vulnerable parts of being humans raising other humans with deep thoughts and actionable tips. Let's dive in together.
00:01:42 Alyssa
Hey. How are you?
00:01:44 Rachel
Hey. Pretty good. It's been a minute.
00:01:47 Alyssa
It has been a minute. Also, I was just rocking sweatshirt vibes today.
00:01:51 Rachel
I know. It's just like one of those days. It's so cold.
00:01:54 Alyssa
It is so cold. And today, Sagey said, when is it not gonna be snowy and cold anymore so I can ride my fire jeep? And we were like, I'm so sorry, in like 17 months.
00:02:11 Rachel
I know. I was actually thinking, it was either this morning or yesterday, that this is the time of winter where I start to feel sad about it being winter, and it's nowhere near over.
00:02:25 Alyssa
It's nowhere near over, so real, so real. Well, today we get to hang in a different way than usual and you get to be the guest.
00:02:38 Rachel
Yes, okay, that's what we're doing right now.
00:02:42 Alyssa
That's what we're doing, how you feeling?
00:02:44 Rachel
Okay, good. Yeah, its gonna be fun.
00:02:47 Alyssa
I mean, this is typically fun. This is typically a triggering time of year for you.
00:02:58 Rachel
Yeah.
00:02:58 Alyssa
So how you're holding up for real?
00:03:01 Rachel
I'm better in the last like three days, I've been better than, I had like a two week span recently where I really thought I was relapsing and was probably gonna go in and get some labs done. I think it was actually more related to some stress and grief that I've been navigating in my personal life. But I had this tight feeling in my chest and in my throat all of the time, or a feeling of a lump in my throat. And although it was not my experience when I had Hodgkin's, a lot of people with Hodgkin's will get like a mass in their chest and we'll have symptoms like that. So when it first started, I was like, oh, I'm having heartburn, that's weird. I never have heartburn, whatever. And then it just like, wasn't going away. But then it also like got worse when Cody left to travel.
00:03:58 Alyssa
It's so weird, this heartburn is contingent upon whether or not my husband's around. It's an interesting physical symptom.
00:04:09 Rachel
Yeah, mm -hmm. The thing that's tricky about Hodgkins is that a lot of the symptoms of Hodgkins can also be symptoms of lots of other stuff that is not dangerous to your health. So it's a lot easier for me now to be like, okay, I'm going to give this some time. I'm going to like let this ride for a couple of weeks and see where we land versus like when I was earlier on in the post -cancer life, I would have tried to see my oncologist like the first day that I had symptoms.
00:04:48 Alyssa
Which also makes total sense. When you're in that space where you're like, okay, I can ride this out for a couple weeks or whatever, what's your mental health in those two weeks?
00:05:03 Rachel
Yeah, it's tough. If I have downtime, like that's just where my thoughts go. And part of having obsessive compulsive disorder means that once a thought gets stuck in my brain, it's very, very difficult to think about anything else. So it's definitely a challenge. I would just say it's like a constant drain on my energy to be like, no, I'm not going to let this consume me right now. And like, I will try to be present with the kids or focus on work or whatever. But yeah, it's just a constant drain on my energy because I'm constantly redirecting myself.
00:05:41 Alyssa
Totally. Yeah, you're like, ooh, I don't want to think about this right now.
00:05:46 Rachel
Also, it's not going to help me to think about this right now, right? Because I decided I'm going to wait, right?
00:05:52 Alyssa
Right, right.
00:05:52 Rachel
So it's either I'm going to call my oncologist today or I'm not going to think about this constantly. Like those are the two options that I give myself.
00:05:59 Alyssa
Yeah, I like that. So when you are looking at the like anxiety, how do you manage the anxiety around uncertain outcomes? And also, how has that process changed over time? Because how far in are we now? I'm trying to remember.
00:06:20 Rachel
Like eight years.
00:06:21 Alyssa
Eight years?
00:06:23 Rachel
Yeah, or like seven and a half, maybe. I think seven and a half. Yeah. So in the beginning, it was like, I couldn't not think about it. It like wasn't a choice. It was like, if I thought I was relapsing, or I thought I was having a symptom, it was like, panic, tears, I need to see my doctor. I need to talk to my therapist. Like, I need all hands on deck for this. Like, I can't handle this by myself. And you know, when I was fresh out of treatment, Nora was three. So my goal always was to be able to be my most present self for her. And at that time in my post -treatment -
00:07:01 Alyssa
Or like two and a half, right?
00:07:04 Rachel
Yeah. Yeah.
00:07:05 Alyssa
She turned three that first year, but like two and a half, like fully, because you ended treatment in May. Yeah. Yeah. So two and a half. She was so little.
00:07:13 Rachel
So like a baby. Yeah.
00:07:15 Alyssa
And you were a stay -at -home parent.
00:07:16 Rachel
Stay -at -home parent, yes. And so at that point, because it was so consuming for me, it was like, I need to get input from my oncologist, is this an actual concern or not? And then B, I need to debrief with my counselor as soon as possible so that I can get back to being a mom. That is pretty much, I would say for the first year, it was definitely like, every time I thought about relapse, it felt like an emergency. And then slowly that starts to dissipate. And it's kind of, also it was helpful for me to like, oh, I would have a weird symptom. So one of my symptoms when when I had Hodgkin's was I had this like rash that I couldn't identify and whatever. Well, I also have psoriasis and eczema. So like, I'm gonna be having rashes. Like my skin is rarely clear, right? So then it's helpful for my brain when I have the experience of like, okay, I have a rash, I'm not sure what it is. Okay, well, I've seen my oncologist and my labs all look good. He's not concerned about it. And like when that started to happen when I would like have symptoms pop up and I would see my oncologist and he would be like, yep, there's nothing of concern in your blood work. like, you're good. Then it was like teaching my brain like, okay, we're going to have these experiences where we're going to have symptoms that could be Hodgkin's coming back. And then they're not. And so I started to create these neural pathways of like, I'm going to experience things in my body, and I can still be okay. It doesn't always mean that I'm dying.
00:08:43 Alyssa
Yes. Yes. Oh, that makes so much sense to me, the neural pathway piece. I think this is something that comes up for a lot of folks that have more than one kid. We're like first kid, there can be so many like, oh, what happens here? What happens there? What if this happens? And then by the time you get to kid number two, you're like, oh, for the most part, like, yeah, they're going to fall down and get hurt or they're going to whatever, like, yeah, their sleep environment's not going to be the same, but they're going to have a crappy night. We're all going to survive it, right? As we navigate things over and over, we strengthen those neural pathways and it moves from an unknown to a known.
00:09:25 Rachel
Yeah, exactly.
00:09:26 Alyssa
And so that makes absolute sense to me that as you had that experience over and over of symptoms, because before it was like symptoms, not believed.
00:09:37 Rachel
Panic. Panic. Oh, you mean prior to diagnosis. Oh, yeah.
00:09:42 Alyssa
Yeah. And so then to go from like that to then like symptoms, diagnosis, right? And then like the unknown of what does this look like? What does it mean now? What does it mean long term? And to then be in again, a new space of like, okay, when I've had symptoms in the past, not great, not great outcomes there in terms of like what that meant, right? And so to develop the neural pathway of like symptoms and positive outcomes of like, I mean, not to say psoriasis is nothing, but like, okay, cool. This is psoriasis, not cancer is cool.
00:10:21 Rachel
Correct. Yeah. And I think part of it, you just kind of reminded me like, I'm so far removed from it. Now I forget sometimes like how traumatic it was to be misdiagnosed for so long and like, have all these symptoms and be like, something's wrong. And everybody's like, No, it's not your postpartum. You're a you're a woman, you're breastfeeding, you're not sleeping, like, whatever. And so then I, when I did get diagnosed, I had all this guilt of like, why didn't I push harder? Why didn't I go to another doctor? Like, could I have prevented my family from experiencing this trauma if I had gone harder? And so then I lived in a space after cancer. I was like, all right, if I get a symptom, like I'm going hard because I'm not going to, I can't do that again. I don't want to put my family through that again. And now it's like, then I had to get to a point in therapy where I was like, all right, this isn't also not a sustainable way to live. So I started to try to stretch myself. And obviously, there were times when I found that lump right after I got pregnant with Abel. And I was like, all right, that's a lymph node.
00:11:26 Alyssa
At the beach.
00:11:26 Rachel
Yeah. And so I was eight weeks pregnant with Abel. I was a year in remission when I got pregnant with him, early pregnancy with him, find the lump on my arm, feels just like a lymph node. That even now eight years out, if I found a lump like that, I'd be going right to the oncologist. So like that to me was like rational response, right? But like for other things that are like more nonspecific and aren't so clearly like you need to get this looked at, don't be dumb. I'm like, okay, I, like a thing that I say to myself is like, okay, I don't have enough information about this right now to make a decision. So can I live in a space for a couple of weeks of not having enough information and see if I can learn more just from living in my body, or can I not handle that and do I need to call my doctor? And over time, I've just tried to like stretch out kind of how long I can just watch my body and see what's going on. And I kind of have like an internal limit of like if it's three weeks and I don't notice any change or improvement and I still feel really worried about it, then it's time to call the doctor.
00:12:28 Alyssa
Well, and I'm sure there's a part of you there that, because you got diagnosed in November, stage four, but when was the first time that you were like, something's not right, and had your first misdiagnosis? Wasn't it like March?
00:12:45 Rachel
March.
00:12:45 Alyssa
Okay, yeah. And so March to November, a long time to be living with cancer that is misdiagnosed and then end up at like, oh, now it's stage four, right? And like, of course, that like, what if part of you that's like, what if we would have caught it in March? What would it have looked like then, blah, blah, blah. And there's a big difference between it's March and I'm waiting to November versus it's today and I'm waiting two weeks.
00:13:12 Rachel
Totally. It doesn't feel – I'm not risking my life by waiting and trying to build some trust with my body. I think some people hear that and they're like, that's reckless. If you think you're relapsing, you should go to the doctor. I have thought I was relapsing so many times.
00:13:30 Alyssa
You would go to the doctor almost every day, especially in certain seasons where you're like it's a triggering, you know, like around the time of diagnosis is usually a triggering time.
00:13:43 Rachel
Correct.
00:13:43 Alyssa
Things like that where it's like when we're looking at those seasons, if you were to go to the doctor every day or every time you like thought there was something, it would be every day. Your blood work bills would be insane.
00:13:58 Rachel
Legit. And like, I still, I'm still being, I'm still under surveillance with my oncologist. I'm still following the recommended surveillance protocols for my cancer. One thing that was helpful for Cody and I is when we checked in with my specialist in Boston a year after I had been in remission to A, figure out, do I continue to have scans? Do I continue to expose my body to radiation? And B, can I have a baby now? One thing that he said is that with Hodgkin's, if you relapse, because it's such a symptomatic cancer, like you will, it's okay to like wait and watch for a little bit, it's not going to change the outcome because when he was like, I don't recommend you getting scans anymore because at this time I was 25 and I had had four PET scans and a bunch of CTs and a lot of radiation. And he was like, I don't recommend you getting scanned anymore. This marker in your blood was really elevated when you were sick and went back down to normal range when you were in remission. So like, we'll use this to monitor you. And I was like, okay, but like, what if my blood work doesn't show it and a scan would pick it up earlier? And he was like, yeah, according to the research, that doesn't change outcomes for Hodgkin's patients. So like, that's another thing that helped me sort of feel confident about my made -up watch and wait system. Because I don't feel like I'm putting myself in jeopardy by doing that. And I think it's good for my mental health to not jump the gun every time I am questioning something. And also I don't want my kids living in a space where they're seeing me panic and go to the doctor every 30 seconds.
00:15:47 Alyssa
Oh, 100%, that's so contagious, right? Like then they will have the fear of my mom might have cancer, what's happening, right? When you look back at like early days where you're diagnosed and you're navigating cancer as a mom of a two -year -old, stay -at -home mom of a two -year -old, is there anything outside of the like I could have like a glimpse into the future and see like, okay, I go into remission, we navigate this, yada, yada. Is there anything you wish you would have known that like, say if somebody in your circle tomorrow was diagnosed and they're a parent of a child and they're gonna be navigating this, is there anything you would have told your younger, earlier in this journey self that you wish you would have known?
00:16:36 Rachel
Yeah, I would have told her that Nora is going to be okay. Nora can handle this and so can you and you have tons of tools and resources and support to make sure that she's okay. I was so like guilt -ridden for so much of that period of time because Nora's life changed so drastically from like being home with me all the time to us living with my parents and me being in bed for days on end. I wish that I could have had like more assurance that she was going to be fine because she was and she is and she doesn't remember most of it.
00:17:20 Alyssa
Yeah, sure. Yeah, that like the resilience piece, that this is what resilience is. And I think it's so instinctual for us to just be like, I wanna protect my kids from anything hard, right? And this is terrifyingly hard and I wanna protect them from it. And not being able to, it's interesting, I had someone, I was recently in just conversation with a friend and we're both sexual assault survivors and we were talking about sleepovers and she has a really big fear of one of her children being sexually assaulted or experiencing rape and she would love to protect them from it. She's got two girls. And I was like, yeah, no, of course. I don't have that fear. Where my brain goes is like, you survived it, they can survive it. It is survivable. And with the right tools in place, we can navigate this. And that's what resilience is. But also that instinct to be like, no, I just never want them to experience something hard, makes all the sense.
00:18:45 Rachel
Yeah. I also had like really bought into attachment parenting.
00:18:50 Alyssa
Oh, right. I forgot about that early part of your parenting journey.
00:18:54 Rachel
So I had like built this rhythm for us that was like high contact, high breastfeeding, instant soothing, constant availability.
00:19:08 Alyssa
Not allowing her to be in hard emotions.
00:19:12 Rachel
No.
00:19:12 Alyssa
Without touching your body.
00:19:15 Rachel
Correct. And then it was like, well, I have to wean you, because now I'm full of toxic chemicals. And oh, sorry, I can't respond to you at night anymore, because I'm too sick to move. I also can't respond to you during the day. So see you in a week.
00:19:29 Alyssa
And also, for the record, other humans are responding to her. It's not like she was high and dry. It was just you weren't.
00:19:35 Rachel
No, my sister. Right. So my sister took care of us, Nora and I, all through chemo. Cody continued to work and my sister came up from Texas, became my personal nurse and Nora's mom. And so it was this huge shift for me of like, well, the whole premise that I have built two years of parenting on, well, see ya, because if I'm gonna continue to adhere to this, then I've totally failed my kid because now I can't be physically available to her. I weaned her in a way that was not in alignment with my goals as a parent and our relationship up until that point, because I had to. And I can't shield her from this reality, because it's just part of our family right now. So she experienced hard emotions that I was not able to respond to. Of course, my sister responded exactly how I would have, right? My sister responded exactly how I would have. But I, yeah, it was a first for her, of like, for the first time in her two years of life, I was unavailable.
00:20:43 Alyssa
Yeah, and a first for you of like, when I say first for her, I mean like, it was a first for her to experience hard emotions and for you not to jump to stop it.
00:20:54 Rachel
Right, like, oh, you're crying, here's boob. That was the first two years of her life.
00:21:00 Alyssa
Exactly, and so now you're navigating cancer and hearing her cry in a way that you never allowed yourself to do or for her to do. And we know from the emotional intelligence side of this, like that's really, really important in resilience is allowing yourself to feel, but when you're doing that for the first time and you just got diagnosed with cancer, like, dang it, what a doozy.
00:21:31 Rachel
Yeah, it was really hard to have like a rational response to what I saw as like a fracturing of our relationship because I was in such a traumatic space anyway it like felt like the end of the world to me because I'm like well I could be dead in six months so if her last memories of me are like what I was perceiving and calling in my own mind neglectful then I've done nothing but traumatize this child like that was where the you know It was like, I'm probably gonna, I thought that I was going to die. And so I'm like, all right, well, I'm leaving her without a mom, so great. And also for the last months that I'm with her, I can't respond to her, right? And so then of course I learned, like I had a good prognosis. People have probably heard like Hodgkin's is the good cancer so then I could start to have more perspective of like, okay, this is a temporary situation and I'm not gonna be able to respond to her right now. And I'm also gonna come out on the other side be able to parent her. But in those early days of not knowing and feeling like I fractured my relationship with her and I might be leaving her without a mom, it was really, really hard to cope with.
00:22:48 Alyssa
Unimaginable, Rach. That's unimaginable. Let's chat for a minute about the family stress component, right? Because obviously there's, it's unavoidable. This is a classic, like high stress situation. And we know that stress is contagious. The stress response, when it happens in one person, it's going to be mirrored in others in the same way that if you come into the room and your partner's in a crappy mood, that's contagious. And you're like, what's going on, you can feel that energy. The same thing happens when our nervous systems are stressed and you're like, ooh, it is a, you can feel it in here, right? And like everything's heightened. What were things that you found helpful from other people in the early days, both for you and for your family unit? And what were things that were not helpful?
00:23:52 Rachel
So, the not helpful was advice from people that, well, really from anybody. And I know that doesn't sound like very kind,
00:24:00 Alyssa
Its fair.
00:24:00 Rachel
But it's so overwhelming to be like coming to terms with a diagnosis. And then it was like, my oncologist in Maine was surprised when my scan came back showing that it was stage four. So then he was like, maybe we need to get you into a clinical trial. There's all this uncertainty, right? And like, if you Google the statistics for Hodgkin's stage four, they're not awesome. So then it was like, as this was happening, as I'm figuring out like, this is advanced, I've got to get into a specialist in Boston, I'm going to figure out what's going on. I'm having like random people messaging me about like, going vegan and doing coffee enemas. Or like, here's this herb that I read about. Hmm. Okay, I'm not going to be in the space to take that information in. Also as somebody who was also very into a crunchy organic lifestyle at the time of diagnosis, it was additionally triggering for me because I'm like, yeah, no, I've already been living like that and I still got cancer. So I just need you to be quiet while I figure out how to stay alive for my kid. So that was difficult.
00:25:08 Alyssa
And it's that belief system already being challenged, right? If I live certain ways, if I take certain herbs, if I whatever, then my body will be strong and healthy, and to then have that challenged of like, shoot, I was doing all this.
00:25:22 Rachel
And having to do chemo when I wouldn't even take, I literally wouldn't take a Motrin, OK? I wouldn't take a Motrin for a headache. I wouldn't eat something that had stevia in it, OK? Yeah. And then I was like, well, I'm getting six months of chemo, so awesome, right? So I'm dealing with all of this, and then to have people being like, well, if you just do this, maybe, Also, you're making me feel bad about myself. You're making me feel worse.
00:25:50 Alyssa
Yeah. Right. Like I caused it or I could have prevented it.
00:25:54 Rachel
You're making me feel like it's my fault, yes. I already was dealing with that, right?
00:25:57 Alyssa
Yeah.
00:25:58 Rachel
That was the most, I would say, harmful thing was people basically telling me not to do chemo.
00:26:07 Alyssa
Mm -hmm. Mm -hmm. There's this thing that KMM on our team, our podcast producer, let me see if it's in the notes. She had popped in there. It is. Okay. I was like, I saw this somewhere. It's called the ring theory. Have you heard of this? I hadn't heard of it. It was new to me. But it is this idea of like setting an expectation that folks in a, it's like all these different circles are like rings and the person in the center is the person in crisis. And then it goes out of like spouse and children and parents and other family and close friends and co -workers and acquaintances whatever and the whole idea is that If you're in a farther out ring, you don't dump your stress or your whatever on to anyone that's in a closer ring than you.
00:26:55 Rachel
Mm -hmm,
00:26:56 Alyssa
And I think that makes total sense, right? So like there's no one that gets to dump their stuff on you because you're the farthest ring in this circle, right? And so like nobody gets to dump their stuff on you. You on the other hand, get to vent and dump your stuff on anyone else.
00:27:19 Alyssa
Yeah. Yeah, so that was one of the hardest things.
00:27:26 Rachel
Yeah. The other really hard thing -
00:27:28 Alyssa
It's like find a therapist or talk to your friend about it, right? Like, hey, random person--
00:27:34 Rachel
I am not the one.
00:27:35 Alyssa
No, I am not your person. Talk to somebody else about this. When I actually told, because I told my parents as an adult that I had been raped as a teenager, and when I did, I said in telling them that I love them and I'm happy to answer questions that feel comfortable for me to answer and they can ask whatever they would like and I'll let them know if I'm going to answer, but if it was about their processing of this, I needed them to find somebody else to process with. And it was my favorite boundary that I set for myself.
00:28:09 Rachel
Yeah. Yeah, I think when you are experiencing a trauma, having boundaries like that is, or processing a trauma, even if the experience is over, I think that was something that was really challenging for me was, and both my parents tried to hide it in their different ways, but of course we were living with them because--
00:28:30 Alyssa
Yeah you moved in with them.
00:28:30 Rachel
Right. I needed the logistical, right, I needed the logistical support. But like my mom would get like distant.
00:28:43 Alyssa
Yeah, sure, that's what I do.
00:28:46 Rachel
Almost like cold shouldery. Because I think otherwise it would have just like come flowing out of her and that wasn't something that she was comfortable with.
00:28:58 Alyssa
That's relatable. I just, I disconnect where I'm like, if I've let myself feel any of this, I will feel it in a way that feels overwhelming and like too much and too scary. And so my go -to reaction a lot of the time is to shut down or disconnect.
00:29:14 Rachel
Yeah. So it was just hard seeing, observing that dynamic. Cody came to all my chemos except my dad wanted to come to one. I love my dad and I'm actually glad he's not going to listen to this because he doesn't, but it was my hardest chemo because he was so stressed. Cody got into the groove of chemo really quickly and would hang out with me if I wanted to hang out, but also they give you tons of Benadryl and Ativan. I was usually drugged and just wanted to lay back and try not to feel sick. Cody would just fall asleep next to me. There were no expectations.
00:29:55 Alyssa
Shocker. Cody can fall asleep anywhere.
00:30:01 Rachel
He's a professional napper. And like, chemo infusions are long, or mine were, they were like six hours. So it was like, you know, we're gonna be here for for a hot minute. And my dad, he tried to be so awesome, and he was, but I just felt like I had to like, be okay for him.
00:30:17 Alyssa
Yeah, totally.
00:30:19 Rachel
And like, I usually would cry at chemo sometimes, like, just either from sadness or nausea or both.
One of the meds was really hard and would make me feel super sick while they were pushing it. It was one where they manually pushed it through my IV and it was terrible. When Cody was there, I would just cry and have my puking bag or whatever, but with my dad, I felt like I had to be like, it's okay. It sucks, but I'm good. So it was that, just balancing my own pain with then seeing people that I love also experiencing a lot of pain and now if I experienced it now I would have just been like, okay, dad, if you come with me like you're going to see me being really sad and not feeling well and I'm not going to be able to keep a smile on for you. But 25 -year -old Rachel wasn't able to.
00:31:12 Alyssa
Totally. 25 -year -old Alyssa had very, very few if any skill sets for this.
00:31:18 Rachel
Yeah.
00:31:18 Alyssa
I wonder why he wanted to come.
00:31:21 Rachel
I think it was a twofold thing. I think one, he wanted me to feel like he cared about this experience, which I knew that he did, because he made it clear.
00:31:29 Alyssa
Yeah. And it's who he is at his core.
00:31:32 Rachel
Totally. He wants to make sure that the people he loves know that they love him. I mean that he loves them, but I also think he just wanted to -
00:31:38 Alyssa
But he is also like, he takes care of the people he loves.
00:31:42 Rachel
Oh, for sure.
00:31:42 Alyssa
Like, he is very present in your life.
00:31:48 Rachel
Yes. And I also think part of it was, like, curiosity, like, how can a chemo infusion take six hours? Like, what's happening over there, right? Like, why is it such a full day experience for you? So I think that was part of it, too, of just, like, what the hell is this, you know? As he loves to say, what the hell is going on over there? So I think that was part of it, too. Okay, so I think that I covered all the things that were hard. The things that were helpful, I mean my sister was like my lifeline through
00:32:24 Alyssa
So for folks who don't know she your sister had at the time also one child right?
00:32:33 Rachel
No she had had Ellie.
00:32:36 Alyssa
That's right, because Ellie was a baby at my wedding, and you got diagnosed right after my wedding. That's right. So she had two kids, one who was six months older than your daughter,
00:32:46 Rachel
And one who's about a year younger.
00:32:47 Alyssa
And so one had been like two and a half when you were going through chemo, and then like turned three at the end of it, and then one about a year younger who turned one while you were in chemo. And she was living in Texas, and you were in Maine, and she took her two kids and moved to Maine to take care of you for six months.
00:33:05 Rachel
Correct. So she was like my lifeline. Also she was the person, you know, aside from Cody, but during diagnosis time when there was so much uncertainty where I really felt like I could just like let it out and not feel like I had to hold it together for her. Whereas like with my parents that was harder for me. I felt like I needed to like, I don't know, take care of their emotions in some way. So emotionally, my lifeline, but then also just like took care of Nora with her own two kids.
00:33:38 Alyssa
Physically your lifeline, yeah.
00:33:40 Rachel
Literally like brought me my meds every four hours, kept a list of when I had taken what, made sure that I like wasn't on an empty stomach because that made things worse. Like just all of those types of things.
00:33:53 Alyssa
Also P .S. this is where she thrives.
00:33:57 Rachel
Oh yeah, she's such a caretaker.
00:33:59 Alyssa
The ultimate. It's just like, will abandon any of her needs for anyone else at any point.
00:34:08 Rachel
Yeah. So yeah. And then of course I'll, I mean, Nora is a sensory seeking high energy, will run away at this point, we'll run away from you.
00:34:18 Alyssa
That's right, she was a runner.
00:34:20 Rachel
Oh, such a runner. Like one time they took her to the beach while I was in treatment for just like a fun little walk. And she ran all the way down the beach, like around a bend away from them, and they thought that they lost her forever.
00:34:34 Alyssa
So classic.
00:34:34 Rachel
So yeah, it wasn't like a small undertaking to take care of Noni, right? Like she just needed so much of everything, talking, stimulation, movement, play.
00:34:45 Alyssa
Talking
00:34:51 Rachel
So yeah, she took on my super high energy kid and took care of me around the clock, really.
00:35:01 Alyssa
And they lived at your parents too?
00:35:03 Rachel
Yep, moved right in, yeah.
00:35:05 Alyssa
Where did everybody, did you use the basement?
00:35:08 Rachel
So me, no, because she only had, Joel wasn't there. So it was like, my parents were in their master, Cody, me, and Noni were in what is now -
00:35:16 Alyssa
The room by the bathroom.
00:35:17 Rachel
Well, there's two rooms by the bathroom. One has bunk beds in it. That's the room that we would stay in. And then the other one, which was my room in high school when I still lived at home, was Erika's room with her kids.
00:35:29 Alyssa
Okay, so you just had a family room.
00:35:31 Rachel
Correct. So that's how that worked out and I would not have been able to get through because there was like a very short period during treatment when she had to go back to Texas and like we got through it between Cody and my mom but it wasn't great.
00:35:48 Alyssa
Sure.
00:35:48 Rachel
Cody's not a caretaker. He is a playful, fun, engaged provider. Caretaking is not his jam.
00:36:05 Alyssa
Not of other humans. He's a caretaker of the space. He's going to mow the lawn. He's going to run the errands. He's going to go to the dump. He's going to take care of business, but he's not a caretaker of other humans.
00:36:18 Rachel
Correct. I mean, his kids, obviously. He is, I know this is for ...
00:36:21 Alyssa
He is playful uncle. We're at the beach. Cody is on the beach playing games with the kids. We're sitting in chairs chatting while he takes on the kids.
00:36:31 Rachel
He will give up an adult hang to go play with the kids.
00:36:35 Alyssa
Play. Mm -hmm. Yeah.
00:36:37 Rachel
So such a rad human, but caretaking is just not his jam. So it was a challenge for him. He, prior, when my sister was in Maine and taking care of me, he threw himself into work. And then when he got home, he threw himself into Nora. And we didn't spend a whole lot of time together. I was too sick to interact and him just like sitting bedside, he couldn't do it. And honestly, it was better for me if he didn't because it gave me a lot of peace to know that when he was around, he was with Noni.
00:37:13 Alyssa
Sure. And he can't really sit still anyway. Unless he's napping.
00:37:18 Rachel
No, he literally can't. And like, he's not just gonna like sit and hold my hand while I sleep next to a puke bowl. Like, that's just not the vibe. So anyway, it was much harder when, and of course my mom is a caretaker, but also has a full -time job, right? So like, because I was going through treatment during her busy time of year too. So like, it was just when my sister wasn't there and my mom and Cody had to split it, it was harder.
00:37:45 Alyssa
Sure.
00:37:45 Rachel
Um, and like, I, my sister needed to go back to her husband, you know?
00:37:53 Alyssa
Yeah. Had to see him at some point. Was there anything that people on the outside did that was helpful outside of like moving in and taking care of you, like meal trains or anything? Just like little, yeah. Is there anything, like if somebody who's tuning in and they're like, oh, I know someone who is going through cancer right now, I guess a nod to like, what are things that are accessible that people can do that you found helpful?
00:38:22 Rachel
Yeah. Um, first of all, we had incredible support. There were like multiple fundraisers for us. And just like the community outreach was so amazing, and like unexpected the amount of support. But then like, sometimes it's the small stuff, too, that really makes a difference. Like you sent me a package every time I was gonna have chemo. That was like just like a nice mood boost because the days leading up to, so it was like every two weeks I had chemo and like the days leading up to chemo were always like sad because I was like, well, I know I'm headed back to bed for seven days now. So that was awesome. And also like people would just like randomly bring food, which was helpful. I'm like, I couldn't always eat the food, but it fed the house, which took stress then off the people who were trying to take care of me.
00:39:13 Alyssa
A hundred percent. Yeah.
00:39:15 Rachel
So it's like I think about right now I'm one of my close friends is going through a really intense experience of grief and loss. And there have been times where like we've brought her food and she's like, I can't eat, but like my kids can. So please bring the food. And so it's not always like directly to the person who's experiencing the trauma or whatever, but but it's also for their wider circle. It just lightens the load.
00:39:42 Alyssa
Yeah, 100%. And I will say, personally, in sending the care packages every two weeks, part of that was for me. It was like, I need to feel like I'm doing something. And it was something I could do. It was just like, think just a little bit ahead of, if you're going to be laying in bed, what is something you're going to want, or that might be helpful, or whatever? And I think when you're on the outside and it's like, what can I do? Honestly, part of that was for me, of feeling like I was doing something when there's such a helpless feeling as a bystander.
00:40:22 Rachel
Yeah, I think that's so true, is that feeling of helplessness. And also, especially when somebody's going through crisis, it's so natural for their nuclear family to step into action and start. But it's like when you're a little bit removed from that, whether you're extended family or a close friend, it's like, how do I show up for this person? And I think there's a lot of fear of like, if I show up in the wrong way, or I say the wrong thing, or whatever that like stops people from connecting. And like, yeah, sure, it was annoying if somebody said something that felt insensitive, and I'm not saying that's okay, but it meant a lot to have people showing up.
00:41:05 Alyssa
Yeah, not just avoiding you. I also think that's one of the, and we've chatted a little bit about this of like, from a like conservative liberal perspective, but that smaller town vibe. I grew up in such a small town and community and where you live in Maine, it's like there's small town community vibes, right? Where like people know people and like for better, for worse, right? Like the town I grew up in, like everyone knew everyone and all the details about their lives forever.
00:41:32 Rachel
Exactly.
00:41:33 Alyssa
And you got the good and the bad in that, But, uh, in that you get the good of like, people show up, right? Like my, uh, there's two teachers that married each other, French teacher and gym teacher, and they have a kid who has battled cancer and like folks, everyone, is partaking in how do we support the family? What does this look like? The rallying around whatever, or if somebody, if there's a fire at somebody's house or whatever, like all of that community really comes together. And I think it's a really rad perk of small towns and small communities is that we come together for each other.
00:42:16 Rachel
Yeah, there's like a, I don't know, it was crazy. Like there were people that went to high school with my parents who were reaching out offering my family money.
00:42:27 Alyssa
It's incredible.
00:42:27 Rachel
And like, I didn't know these people, right. But it was like, people that my dad was friends with years ago, heard that it was happening and reached out, and I think that is unique to small towns and communities where there's this intergenerational connection of like, well, I don't know your kid, but I knew you, so I'm going to do what I can to take care of your kid.
00:42:48 Alyssa
Yeah. Yeah. I just got the chills, because that's so what I grew up in, and honestly, what I miss in living where we live now. That this city is large enough that you don't have that in this same way. And yeah, I miss it. Miss it hard.
00:43:06 Rachel
Yeah, it's I am so grateful. I don't, I think like there's, people don't even realize what an impact those small actions have. Like, for example, one of the sweaters you sent me during chemo time became like my chemo uniform. And I don't wear it that much anymore, because I'm always hot, but I was always cold when I was going through chemo. Well, the other night, my grandmother was here and she was cold and so I brought it out for her and my family had like a visceral reaction to this sweater because it was my chemo uniform and it's like okay yeah it's just a sweater but it became more to us and I think like that can happen those small thoughtful gestures embed themselves in our memories of an experience and it makes people feel loved. Even if it's really small.
00:44:01 Alyssa
And cared for,
00:44:01 Rachel
Yeah.
00:44:03 Alyssa
Yeah. Oh, it's making me cry. I know the sweater too.
00:44:09 Rachel
Yep. Lived in it. That blue like open one.
00:44:14 Alyssa
Yeah. It is a very cozy sweater. I have it myself.
00:44:18 Rachel
It's so good.
00:44:20 Alyssa
It's so good. Yeah.
00:44:23 Rachel
But yeah, I think like those small things make a huge difference. And I'm on the other side of it right now with my friend who's experiencing something terrible and I have felt some-- like there have been days where I want to reach out to her and then I'm like what if she doesn't want to be contacted or like what if I say the wrong thing and then I'm I think about my own experience and I I'm like no I'm sending the text because even if she doesn't have the capacity to respond I want her to know that I'm thinking about her and I love her and I haven't forgotten that she's going through something terrible.
00:45:01 Alyssa
Yeah.
00:45:02 Rachel
Because I think for somebody experiencing a trauma, their world kind of stops.
00:45:06 Alyssa
Yes.
00:45:06 Rachel
And the rest of the world keeps going. And it can be so incredibly lonely.
00:45:12 Alyssa
Yeah.
00:45:14 Rachel
And not to let your fear of showing up in a wrong way stop you from sending that text or dropping that meal off or whatever it is. Because it's really meaningful on the other side when you feel so lonely.
00:45:28 Alyssa
Yeah, and when you're in that space, the idea of like, like somebody's playing a basketball game right now or like doing just like a regular life thing feels so foreign that I feel like there's also this, at least when I've been in really hard spaces around trauma and like disconnect from the world or feel like I'm in my own little bubble, there's a part of me that's like, I don't want to infect the happy people with my stuff. And so I'm not gonna reach out to you and be like, I'm having a hard time. But when like Francesca would reach out and just be like, checking in on you, what's the level of shit today? Like what? Or just like, hey, I'm dropping off a coffee. If you're in bed, great, like you don't have to come out. I can deliver it to you, or I can leave it at the doorstep, or I can come lay in bed next to you. Right? Like whatever it was, just I didn't have to initiate that conversation or the ask ever with her, and that was just so helpful because I couldn't.
00:46:39 Rachel
Yeah. I think that's so real. I think that for a lot of people who are deep in trauma, they really, truly don't have the capacity to say like, hey, I need to connect right now. So yeah, taking that first step and being the one who initiates and it doesn't have to be a big gesture. It can be a coffee left at the doorstep, you know?
00:47:00 Alyssa
Yeah, just a text. Man, a little goes a long way there. Oh, Rach, I am so grateful that you're here and that you get to continue to be here. When you look back at yourself through these last like eight years of navigating this cancer journey, what do you feel for the parts of you along the way from early days to now that have popped up, whether inconvenient at the time or helpful? What comes up for you for those parts?
00:47:41 Rachel
Mostly inconvenient, but definitely compassion. I mean, honestly, but definitely compassion. I just was so young. It makes so much sense to me that I experienced it the way that I did and that my inner world was the way that it was. Not that now I'm a cancer master and would be fine with a relapse, but just that, that of course it was hard for me to have perspective. Of course I lived with a huge amount of fear. And I used to feel like shame about that. And I did not feel shame about it at all. I feel a lot of compassion and gratitude for the people who were able to, who were not afraid to be infected by my sadness or my fear because it's also triggering for caregivers to hear like, hey, I think I'm relapsing every week and a half, you know?
00:48:40 Alyssa
Totally.
00:48:41 Rachel
It's not like a fun thing, and so I feel a lot of gratitude for the people who, at that point, were showing up for me and are still showing up for me. My sister is still a go -to when I ... And it's to the point now where we can laugh about it, right? I'll just say, oh, here we go. I'm going down a rabbit hole again.
00:49:00 Alyssa
Yeah.
00:49:01 Rachel
But yeah, I feel compassion for my young self, and I feel gratitude for the people who got me through it, because it's not something that I would have been able to mentally survive in isolation.
00:49:14 Alyssa
Yeah. Your sister is so good at hearing it and not talking you out of it or trying to solve it or make it go away, but just being like, okay, yeah, I'm letting you share it.
00:49:27 Rachel
Yeah. Versus Cody's like, it's nothing to worry about. I'm like, oh, well, now I'm cured, because in his mind, he's like, this isn't ... Because he's like, if I was worried, I would tell you to go to the doctor. And I'm like, okay, but I'm worried. Your lack of worry is not fixing this.
00:49:42 Alyssa
He also has his own protective parts, right? That are like, don't entertain this idea, because he's going to have protective parts that are like, I can't go down this again. It was so hard and scary last time, and he doesn't want to entertain this as a possibility again.
00:49:59 Rachel
No. I mean, he, I would say, still has unprocessed experiences related to mine.
00:50:06 Alyssa
Of course.
00:50:06 Rachel
And he's also not like a verbal processor. So like me asking him 8 ,000 times if I think something is worrisome, like it just doesn't vibe for him. He's like, I told you no.
00:50:20 Alyssa
Do you want me to say it in a different language? Like what?
00:50:23 Rachel
He's literally like, I don't know what you want me to say. It's so fun being married to me.
00:50:30 Alyssa
Yeah, dude. I say it all the time.
00:50:33 Rachel
My sister has the vibe. She knows how my brain works so well, and she'll just be like, yeah, it's never a good feeling to get a new symptom. That makes total sense.
00:50:45 Alyssa
She's also such a teacher, like love. She brings hard teacher, oldest daughter vibes to the core. Yeah.
00:50:54 Rachel
Big time.
00:50:55 Alyssa
Oh, I'm so grateful for her.
00:50:59 Rachel
Me too. I couldn't have, I could not have done it without her.
00:51:04 Alyssa
You could have, but it would have been really hard and shitty. For every, not even just for you, but for your mom, for Cody, for the relationships around you.
00:51:13 Rachel
Everybody.
00:51:13 Alyssa
Exactly. She didn't just save you. She saved them.
00:51:19 Rachel
And like the whole dynamic, which there are complications that I'm not going to share on this podcast.
00:51:24 Alyssa
Of course.
00:51:24 Rachel
You know what I'm talking about.
00:51:25 Alyssa
You're not going to air all of your family's personal stuff right here? That's weird.
00:51:31 Rachel
But you know what I'm talking about.
00:51:32 Alyssa
I know.
00:51:33 Rachel
And so, like, she also took care of that.
00:51:35 Alyssa
Yeah.
00:51:35 Rachel
And, yeah, it just would have been really, I would be a different person, I think, if she had not been a part of that.
00:51:44 Alyssa
Yeah, yeah, of course, everything, ugh. Okay, so outside of you navigating cancer, MVP to Erika?
00:51:54 Rachel
Legit. And also, I think, like, I was so worried about Nora being traumatized, but I actually think that period of time was when her, Jojo, and Ellie became effectively siblings. And they still, they still live and interact as siblings, which I am so grateful for. Obviously it's annoying when they fight like siblings, but their bond and emotional safety with each other, she does not have that with another, other than Abel, she does not have that with another child. Those are her people.
00:52:26 Alyssa
Yeah. Yeah. Well, and now, spoiler alert for everybody, Erika moved to Maine. So now, y 'all are doing it together. Yeah. So rad.
00:52:34 Rachel
Doing life together.
00:52:35 Alyssa
That is so true. You were so focused on what is this doing to Nora that you didn't get to see also what is this doing for Nora and the relationship she got to have. And I think how much it grew your relationship. Of course, you wouldn't have chosen that as your exit from attachment parenting, but how much your relationship grew from her getting to experience hard emotions, you learning that she can experience hard emotions and move through them and build tools to cope, et cetera. You got thrown into the fire on it, but so incredible, I think, in the long run for your relationship.
00:53:21 Rachel
I agree. It also, I think, was the start of your and my close relationship. And I don't know that I would be working at Seed had I not had cancer.
00:53:31 Alyssa
That's wild. That's actually true because I wouldn't have hired you in your attachment parenting phase.
00:53:40 Rachel
And I wouldn't have been like, yeah, I'll come work for you because no, you're not about attachment parenting.
00:53:44 Alyssa
Exactly. We weren't in sync on this yet. Yeah.
00:53:48 Rachel
Yeah.
00:53:48 Alyssa
Yeah. That's so true. Isn't that interesting? So true. And then I hired you, I asked you at a year out, I was like, would you be down to come work with me? You're my first ever Seed hire. And I mean, the business was a baby. And you said yes. And then the next time I saw you in person was at the beach and you were like, okay, you can say no, you don't want me to work for you anymore, but I'm pregnant. It's like, all right, let's rock and roll. I actually think that since then we have always had a Seed team member pregnant or on maternity leave. Or on maternity leave. Always. Since you and Abel that it's been a rotation of like somebody's pregnant or on maternity leave and it's wild. Even right now. We have a team member on maternity leave.
00:54:47 Rachel
I know. Who's going to end up pregnant?
00:54:50 Alyssa
Buckle up, Seed team members. One of you is next!
00:54:58 Rachel
It's not me. Not me.
00:55:01 Alyssa
Nose goes. It's so, so funny, which actually, okay, before we wrap this up, I'm going to share this. Zach is getting a vasectomy and this came up because Sagey was planning some things he wanted to do with Zach over the weekend. I was like, oh, so actually dad is going to have to rest over the weekend. He's having an operation on Friday that's a small operation and his body's going to need to rest for the weekend. Obviously he had 7 million questions after that. What's the operation? And I was like, oh, well, he's having an operation because we don't want to have kids anymore. We're all done having new babies in our family. And so dad's having an operation. And he was like, where's the operation? Like what a body part? And I was like, it's on his scrotum. And then he is like, quiet. And he was like, I have a question. Yes. He was like, Does dad have a uterus? And I was like, and he was like, Why is dad having an operation on his scrotum if you don't want more babies because babies grow in a uterus? And I was like, great question. And then just broke down like, dad has sperm in his scrotum and when it combines with an egg of mine, whatever, it makes baby in my body. He's like, okay, he's like fine with all this. He gets all his questions out. This is on the way home from school, classic. Just him and I in the car. Next day, I pick him up from school and his teacher's like, everything okay with Zach? I was like, yeah, did you hear some news? And she was like, Sage said that Zach has an infection in his scrotum and needs to have an operation. So I was like, thanks.
00:56:53 Rachel
That is, poor, poor Zach.
00:56:57 Alyssa
And now that has been like, Sagey cannot get that out of his brain. Like, he is told everyone. Everyone he sees that dad has an infection in his scrotum and has to have an operation and Zach is like this is my nightmare.
00:57:14 Rachel
So good.
00:57:16 Alyssa
So classic. Oh my gosh.
00:57:19 Rachel
It's just like the way that, because they're just trying to understand. Like after Cody's vasectomy, one time at bedtime, Abel was like, mom, when I'm a grown up, do I have to get my balls cut off? And I was like, whoa, no, you don't. And I was like, why would you think that, buddy? You're like, what makes you think that when you're a grownup, that has to happen? And he's like, well, dad had his operation. I'm like, yeah, but nothing was, the testicles weren't removed, honey. They're still there. It's just one of the tubes that carried something was, like it was like shut like a door. And I'm like, also you don't even have to have the tube with the door shut. Like you don't have to have any operations on your scrotum if you don't want to. And he was like, so it's a choice. And I was like, yeah, and none of them involved the testicles coming out.
00:58:12 Alyssa
Oh my gosh, listening to them process is just so good. And then he went to like, is dad going to have to wear a pad in his underwear? Because the last time -
00:58:20 Rachel
Oh, because postpartum.
00:58:23 Alyssa
Yes.
00:58:24 Rachel
Totally. He's trying to figure out like, what does this mean?
00:58:27 Alyssa
Correct. What's happening here? He's like, no babies, but like operation, what can I expect? It's so cute to like watch his process, but Zach is just like, oh, I'm glad that this your sticking point is that I have an infection in my scrotum that needs an operation.
00:58:42 Rachel
Yeah, that's really unfortunate. Sorry, Zach.
00:58:45 Alyssa
Really unfortunate. All right, we can wrap this bad boy up with that story.
00:58:52 Rachel
All righty.
00:58:53 Alyssa
I love you so much.
00:58:55 Rachel
I love you.
00:58:57 Alyssa
Thanks for tuning in to Voices of Your Village. Check out the transcript at voicesofyourvillage.com. Did you know that we have a special community over on Instagram hanging out every day with more free content? Come join us at @seed.and.sew S -E -W. Take a screenshot of you tuning in, share it on the ‘Gram and tag @seed.and.sew to let me know your key takeaway. If you're digging this podcast, make sure to subscribe so you don't miss an episode. We love collaborating with you to raise emotionally intelligent humans.
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