Episode 02. Pain and Guilt: 7 stages of Grief

Something to note. We are not healthcare providers or professionals. We are, however, two people who have lived through a monumental medical event and find comfort in sharing what worked for us two others. These are our experiences and are in no way meant to treat or diagnose the general public. Always listen to your body and always listen to your doctor's for guidance. Alright, let's get into it.

I'm Caitlin Rouse and I'm Kevin Adams and we're going through it.

Hello podcast listeners. I'm Caitlin Rouse and he is Kevin Adams. Welcome back to going through it. This is a podcast dedicated to how we are unpacking a very chaotic year together. We are talking about cancer diagnosis while pregnant, cancer treatments, surgeries and now new parenthood. Something I found myself thinking when listening to our last episode and even the time in between then and now, was how long does each stage of grief last? I want to share that grief is different for every single person. There's no exact timeline to adhere to. You may remain in one of these stages of grief for months on end, but maybe skip others entirely. That is completely fine, normal and absolutely typical. It takes time to go through the grieving process and, as I said before, it looks different for every person. And, just to be as open and honest as I possibly can be right now sort of off script and raw and in this moment, just talking about this is opening a lot of wounds that I'm trying desperately to close. This was an incredibly traumatic event to have lived through and, although I'm grateful to have lived through it, it's hard to sit here and relive and recount some of the worst times of my life the worst time. So thank you for listening and thank you for remaining open and gentle with me, regardless of whether you know me outside of this podcast or not. Knowing that this is a safe space and it's someplace that I can come and talk and just be unapologetically myself is really freeing. So thank you. Getting back into it now, I was also thinking is it possible to repeat the stages of grief? Not every single person can process these stages in a linear way. Somebody may have ups and downs and go from one stage to another and then even circle back. Not everyone will experience all the stages of grief and you may not go through them in order. I, for example, feel like I hopped around from shock and denial to anger, to acceptance and then back to denial Again. There's no clear cut way that this is defined, but it's important to recognize each one so that when it comes up for you and when it comes up for me, I'm able to recognize it, I'm able to name it and call it, so I don't fall too deep down the rabbit hole. So here we are talking about cancer while pregnant, and pain and guilt Feels kind of heavy right, and once that shock started to fade, I think I really started to notice the pain of this loss, a loss of so many fundamentals and factors of my life. The pain felt physical as well as emotional. I also started to feel guilty about some things I could have done or should have done differently in my life, even though now in retrospect I know that was a completely irrational way to look at it Again, it was a way for me to cope. After my first treatment, the reality I was in. My reality still hadn't quite sucked in. The first treatment didn't cause an immediate physical effect on me, and it wasn't until a couple of weeks afterwards where I started to see the physical deterioration of my body that it finally started to sink in. But before I go really deep into that, I do want to highlight what that first treatment was like for me. So we hadn't received all of our boxes and furniture yet from the moving company, so we were unable to move into our new place. When I went to sleep I felt relatively fine after that first treatment, but I woke up with one of the worst headaches I think I've ever had in my life. It felt like somebody or something had stripped every last drop of water out of my body and I was just this dry, empty shell. On top of that, I noticed a lot of wet in my underwear and outside my leggings. My first thought was Leo, okay, you weren't close by. So I tried calling you for help, and I called you on the phone over and over again, but I got no response. I finally peeled myself out of bed and as soon as my feet hit the floor, it felt like a ton of bricks had been released onto my head. I tried to hold onto anything around me for support. I managed to hold onto the railing of the steps for support, while the other hand stayed firmly pressed upon my belly. As I got down the stairs, I saw you outside unpacking some stuff from the car. You had just gotten there only the night before. I just remember waddling outside down the path in front of the house towards you, crying because I was in so much pain, holding my head and still cradling my belly always holding my belly. Do you remember that?

I woke up before you did and I don't really sleep much anyway, especially now and so the car I had ridden up in was literally packed full front to back and there was even a few things on top, and I thought to myself this looks ridiculous. We're going to be here for a while, and I know that the time your father still had people coming by going to the store. So I was like, let me go take some stuff down and also get some things that I brought up for you and I can unpack some things and get settled before you wake up. I was trying to be quiet. I left rather quickly and I went downstairs and went to the car and started unhooking things from the roof. I did not bring my phone. I remember pulling some things out of the back of the car after being out there for a while and then looking up and now always, always remember like this is tattooed on my mind's eye and we're looking up and seeing you and just the expression of so much despair it broke my heart to the point where it just scared the hell out of me. I just wanted to pick you up and just carry you and just hold you out in the cold that morning, seven months pregnant, just to spare, knowing that I couldn't help you. And I remember just holding you and apologizing for leaving you without telling you I was going outside and just letting you know that I'm here and I'm not going anywhere. And it's moments like that that route you in the ground, I think, as someone who's I don't even know if there's a term for it, but just someone who's doing this with you as a partner. It's moments like that that harden your resolve. It's also moments like that, like I said, that scare the hell out of you, because you realize how much you live for this person and if you lose them, there's no way to recover.

It turns out, saying that ac chemo treatment takes a hell of a lot out of you is saying it lightly. This is the drug that will rob you of pretty much everything that outwardly makes you you. The side effects of this drug include bladder irritation, red or pink urine, diarrhea or constipation, hair loss and when I say hair loss I mean full body hair loss, low red and white blood cell counts, menopausal state, mouth sores, nail changes, nausea and vomiting, tiredness, skin changes. What are the long term side effects, you ask? Well, those include cardiotoxicity, secondary cancers, gastrointestinal problems, neurological problems. On this particular day, however, I learned that it truly does strip you of any hydration. But because my treatment was expedited to the same day of my poor installation remember I said in that last episode I missed the chemo class so cut to me, cry sobbing and so much pain and really freaked out that my baby was also in as much pain as I was in. We called the doctor right away and they wanted me to come in to the oncology urgent care unit. I would get to know this place and its staff very well over the course of this journey, but for now I was in such a horrible state I honestly didn't think I could make it there. Turns out, leo was fine. My water hadn't broken, he was still moving and doing okay. I, on the other hand, was severely dehydrated and just needed a lot of rest. We got back to the house and I was just completely exhausted. This experience, doing this without the comfort of our own home and having to go back and forth from the hospital to my dad's house, the house I grew up in it felt very hard. Don't get me wrong. My father and his partner were more than wonderful, especially to have a staying there during such a crisis. Having Leo now, I can't imagine him growing up and having to watch him suffer through something like this, like my dad watched me. But there was a moment where I think it got very uncomfortable. We were struggling because a moving company kept delaying when our stuff would get there. I had already gone through my first treatment and I really didn't wanna have to go through another and not have my own space or even time to set up Leo's space. It was really frustrating. I know that was weighing on you too, right?

Everything that I was witnessing was weighing on me. To see you in that state and, at the same time, concerned about just like you normally are, about everyone around you. It really broke my heart and away, specifically because I knew it was necessary. I remember thinking that I wish I could do more, when all I could do in the moment was just help you through it. But you are a constant. You are the best diplomat I've ever met in my life, and so it seemed like you were able to make it work.

I had to right, and I think that's it's so funny. It's again, it's very kind of you to say that, but it's like what's the alternative? The alternative is to just turn into a cat and crawl under the porch and just die, and I wasn't gonna do that. At one point my dad sat us down for that very formal talk about what could be done and what we should do, and I know it was more of a fact-finding brainstorm talk, but I could see how hurt you were after that. That's when a big shift started there, because at the end of the day, I know we were all in this together, but it did start to feel like fingers being pointed and you messed up during a time that you shouldn't have. How can we fix it? And that was not very positive. Cut to about two or three weeks later, right after we had moved in, and it finally happened. I was running a couple fingers through my hair just to get a small tangle out and the whole handful of hair came out in my hand. That was a major moment for me. It was this moment of holding the physical loss of what I was enduring in my hands. I pulled gently at other small sections of my hair and I felt every single hair detach from the follicle of my scalp simultaneously. I repeated this process over and over until I had a small pile, really like a small stack, of my own hair on the armrest of the couch. I couldn't believe it Again, remember. My denial was very strong. So in my back pocket I was holding on hope that I was a special case and that I wouldn't be affected by some of these side effects. Nope, here's the sign that I'm just like everybody else and my body is starting to fall apart. It's starting to fall apart with a small, tiny baby growing inside me every day. Enter pain, enter guilt. Betterhelpcom goes on to define the pain and guilt stage by stating, quote during the stage, it is normal to seek reason and wonder if you could have done something that would have prevented the loss, or feel remorse for not being able to make peace with a loved one or maintain a healthy relationship. Although these feelings can seem overwhelming, they are natural emotions related to grief and part of the grief model. It is crucial to acknowledge these emotions. End quote. I did often feel an immense amount of why me, especially in the first few months of beginning treatment and this process, because no one in my family had ever experienced this before. I felt like my life and my experiences were completely excluded. I started to wonder what could have caused this. The problem was obviously me. So what did I do so wrong? I smoked when I was younger, but so did my mom and my dad, and even my sister. They don't have cancer. So that wasn't it when I first struck out on my own when I was 17 or 18,. I was very poor. I ate terrible food because it was the cheapest option, but so do a lot of Americans, and most don't develop breast cancer while pregnant. So it wasn't that I even started to think. Okay, I never wanted to be pregnant, maybe because of living my entire life never entertaining the idea and somewhat shunning the idea altogether. My body is now punishing me for actually becoming pregnant. It turns out there never was and there never will be a single thing I can point to. But the acceptance of that is very hard because, as it turns out, it's a lot easier to accept when there is a tangible reason you can point to and say it's because of this. When that doesn't appear, it's a hell of a lot harder to accept. Hell, there are even still some people in my family that to this day feel compelled to share with me their theories or their ideologies on why this happened to me. Although none of these people are medical professionals in any way, most of them lack very basic, fundamental pieces of evidence to substantiate their claims on these thoughts and feelings, because, at the end of the day, that's exactly what they are thoughts and feelings. I am not responsible for those thoughts and feelings. I am definitely not beholden to listen to those thoughts and feelings. Again, it's all looking for something to blame which, ironically, some of those theories tend to almost always center around me as the perpetrator. You want to talk about some real pain and guilt to unpack there, but that's another story for another day. More love. The story is it's a lot easier to digest when there's something to blame, when I'm asking and every doctor on the cancer board at Hopkins essentially is shrugging their shoulders saying we don't know yet at what encourageancy sells to divide an alarming rate, it's easy to blame myself in the moment, pivot a little bit and to give a brief glimmer of hope. And all of this pain and guilt. I would be remissed if I didn't share the night that Kevin helped me shave my head. Here I am. I guess I was seven or eight months pregnant at that point.

You're magnificent.

Here I am Magnificent, I guess he says, and having to shave my head almost down to the scalp, I don't know, I would say past shoulder length hair. I guess I did everything that you're not supposed to do to your hair I bleached it, I colored it, I would flat iron it, I blow dried it, I curled it, I did extensions. I did everything.

I have extensions hanging up.

That's not it Okay. I always saw myself with hair, so already feeling enormous because I'm pregnant and having to shave my head just shaving my head in general, I mean, it doesn't matter if I'm pregnant or not. That makes it worse. But that was a hard time. That was not a fun night. I think we laid down a bunch of Trader Joe shopping bags that we had cut open and just lined them all over the bathroom floor. You came in to help me do the back of my head and it was emotional. I don't think I was emotional in the moment, but later on I definitely was Probably still in shock and denial.

I remember yeah, I would agree with that last comment, because from the first little stack of hairs that you pulled out till the time when you were ready to actually cut it, I remember talking to you about eventually cutting it and you're like, no, it's fine, just leave it alone, it's fine. And I think a day went by and then I thought it was just going to be two, three days, but I think the following day, like that night, you were just in the bathroom and you just came into the studio and you were like, okay, can you help me with this? And I was like, oh, you went to it. Now it's okay. It was just, I don't know. Through every one of these stages, the only thing I can relate to now is watching our son learn words and learn to communicate with us and learn how to walk. It's this thing that you know is coming, and then suddenly it's there and she just grabs on. And I did my best to make sure that you had the space to go at your own pace and to go with the flow, much like we do with Leo. But it was always amazing to see you grab on and just go on the ride.

Yeah, it's a fucking tower of terror. Get on the ride.

It's like yeah it was like green dots.

This is like dragging me, kicking and screaming the entire time. Yeah, I'm sorry, I'm not trying to shove your analogy into the dirt, but it's like.

It reminds me of when we went to Disney World and we went on green dots like that for a year and that was pretty awful.

For all the listeners out there that don't know, I have always had a lot of panic and anxiety in my life, especially in things that I have no control over. Being on a ride, you think, oh, this is going to be fun, and then it's just a two minute long panic attack.

The most intense parts from what I saw. I remember seeing you get off of that ride now that I think about it, after we've gone through both of these things, and being like yeah, that's actually pretty accurate, because you were crying and vomiting and I felt so awful for even like just being in the vicinity, because you already said that. I mean, we both knew you got motion sick from time to time and we didn't think it was going to be that bad. But it's green dots for gone six. It was awful, it was so horrible. I'm sorry. I'm just sorry you had to go through that.

The ride or the cancer.

Do you have to ask? All right, we're getting off track. Sorry, Track green guts Hold on to your butts.

I was shaking my head. It was traumatic, regardless of what I was showing, how traumatic it was in the moment, and so I think I had a good shower cry once I got in the shower. At that point you were nice enough to sweep up all the hair and put away all the bags, whatever it was that we laid down, and I took my time and got out and I have my out of the shower ritual. So lots of coconut oil was going through all of that, and I'm trying to avoid looking at my own reflection because I'm just going to say it out loud. I mean, I didn't think I looked that bad. I actually can pull off a shaved head pretty well. I don't have any weird shapes or anything like that, but at the time I got in traumatic so I was trying to avoid it. So I get all dressed and I'm walking out of the room and I'm going to go tell you something and I hear you're in the other bathroom. So I'm walking to the bathroom and I turn the corner and your head is shaved Like pretty much almost bald. I didn't know that you were going to do that. And just to really illustrate this for anybody else, Anybody that doesn't know us.

Can you get some context?

At that point you had grown your hair out for a long time, like 15 years, right?

Just 13 years, yeah.

You had locks down. The longest ones were like pasture butt, yeah. But to see you completely bald when the whole time that we've been together, I mean I only knew you with longer hair. So it was just a gesture that I I mean I hadn't even asked to make or I wasn't even thinking about that, and so just to see that happen. It was like this just a sign of support that I wasn't prepared for. But it was like you didn't even need to say anything, right? Just saying that was like that was huge.

Ask me if I miss my hair, please.

Do you miss your hair?

All the time. It helps me in a lot of ways keep perspective on why I'm here and really how unfathomable what you're going through is. Yeah, my hair was an important thing to me, but even in that moment, I could still shrug and say it's just hair, it'll grow back, knowing that at some point they were going to take things from you that you will never get back time, security, any kind of peace of mind, parts of your own identity, just being able to live in the ignorant bliss that is I'm going to wake up in the morning. So many things I miss. Yeah, I miss my hair sometimes, but that thought also just helps me, help me feel like I was an imposter, like I wasn't just some spectator that was living next door just trying to help out, or somebody that is going to be like it's going to be okay, it's going to be fine. It's just hair, it'll grow back. It's just skin, it'll grow back. You can't do that and it was something really, honestly, not just for you, but it was for me. It was me putting my armor on to let you know we're fighting together, turns out, one of the requirements is you don't have hair. Check, check. We're fighting together the daily reminder for me and for you, that we're fighting together.

I love you very much. Thank you so much for saying that. I'll lighten the mood a little bit, I will say turns out we both look good, we're shaved heads. So who knew? As always, I really want to take a moment and acknowledge if there are any listeners who are facing anything remotely similar to what I have, what we've gone through, please know you are strong, you're graceful, you're so, so beautiful, even when you don't feel like it, even when you look in that mirror and you don't even recognize the person that's staring back at you. You are capable of fighting and beating this and so much more. If I can do this, you can absolutely do this. Thank you so much for listening to Going Through it. We will be back the week after next to unpack a third stage of grief, anger and bargaining. If you've come across this podcast and you know someone else that could benefit from our experiences, please share it with them. If you'd also like to follow our journey even more, subscribe to our mailing list at wearegoingthroughitcom. You can find us on Spotify, apple Podcast, amazon Music or wherever it is you listen to podcast While you're there. Please leave us your feedback with a comment and give us a five-star review. It really will help us. We'll see you next Friday.