Surgery is scary, painful, and full of unknowns. This supplemental episode highlights the ups and downs, as well as how Caitlin's identity was impacted by multiple major surgeries.
Surgery is scary, painful, and full of unknowns. This supplemental episode highlights the ups and downs, as well as how Caitlin's identity was impacted by multiple major surgeries.
Something to note. We are not healthcare providers or professionals. We are, however, two people that live through a monumental medical event and find comfort in sharing what worked for us to others. These are our experiences and it is in no way meant to treat or diagnose the general public. Always listen to your body and always listen to your doctors for guidance. All right, let's get into it. I'm Caitlin Rouse and I'm Kevin Adams. We are 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 both are navigating a very chaotic year together. We are talking about cancer diagnosis, cancer treatments, surgeries and now new parenthood.
CAITLIN:Hi, it's been a while To provide a little more context. Why such a long break between episodes? As you can imagine, that last one was pretty heavy Throw in the holidays, the new year and, while we're at it, pepper in the fact that Kevin Leo and myself got COVID on Christmas Eve. This was an exhausting four weeks. Covid really took me out. I had never contracted it since the initial outbreak, and getting it now, when my immune system is not 100% back to where it was pre-cancer treatment, it made it pretty rough. For those of you wondering, leo did great. He slept a ton and we really just needed to focus on keeping him hydrated, but he only had about three or four days of actual symptoms we could see. But I'm happy to be back and doing this, especially in a new year. Oh yeah, happy new year everyone. For me. I am just so happy to be leaving 2023 behind.
CAITLIN:This past year was a gut punch, and then some to me, on my spirit and to my life, coming out the other side. I'm happy to be here. You probably have already seen that I'm not quite ready to move on to the next official stage of grief. There was a whole separate portion of this particular stage that I wasn't able to unpack in the previous episode, and it's really important for me to address it. I'm going to rip the Band-Aid off right now and just tell you I'm talking about surgeries, all of my surgeries. Just so everyone is aware, I had never had any surgery prior to this event and within the span of six months, I had four major surgeries. Well, let's say major surgical events, because I am including the birth of my son in there.
CAITLIN:Anything I'm about to share in this episode was my choice. I know I state this at the top of the show, but I want to be very clear that if you are listening and currently up against anything remotely similar to what I faced, please always listen to the guidance of your medical teams and to what you think your own best interests are. When it came to all my surgeries, I leaned on my doctors for a lot of that direction. However, there was a small couple of choices that I made my own choices on because I thought that they were the best for me. After completing the hardest chemotherapy treatment, I decided after a very tedious, long and sad road of consideration, that a bilateral mastectomy was the best choice for me. My oncologist surgeon had recommended I do a lumpectomy of my left breast where the tumor was, and if I wanted to reconstruct that breast with my plastic surgeon, I absolutely could.
CAITLIN:Now, for me, I never wanted to go through this experience ever again, leaving my right breast intact. It just seemed like such a risk. I believed, and I still believe, it was in my best interest to remove both of my breasts. This was absolutely influenced by the fact that when the surgeon looked me in the eye and told me that overall, I had a.5% chance of ever developing breast cancer in my life. Those odds were already so, so low. The surgeon then shared that I was 18% likely to develop cancer in my right breast if I left it intact and that anything under 25% or 30% they don't see the need to remove. The odds did not seem in my favor from the get-go Hearing 18% after 0.5% sounded to me like it was definitely going to happen.
CAITLIN:Now, as you can imagine, making a decision like this was anything but easy. I want to take the opportunity to discuss my relationship that I had with my body prior to cancer. Of course, as a young woman growing up, my body was constantly critiqued by not only my family, friends, significant others, but the media as well. When I was a teenager and in my early 20s, I always felt the need to fit a particular mold. As plenty of any female identifying listeners can attest to, no matter how you look, you'll never fit that standard or mold and because predominantly most of my relationships have been heterosexual, the men in my life never really held back on what they thought about my body. I heard things all over the map from when you turn 18, I'm going to buy you breast implants to I love your small boobs, although I'm used to holding more. It's sort of ironic that as I entered my 30s, I was finally beginning to love my body, and my breasts in particular.
CAITLIN:Of course, this would happen now, I think, a lot of times the idealized standard of a woman, and now particularly of a mother, whether it be in movies or on billboards or commercials. It's completely fetishized and unattainable. I believe these images and idols are intended to represent the women in our lives mothers, sisters, colleagues, daughters, etc. The standard seems impossible right Always be thin, but never too thin. If you're too thin, then people will say it's not healthy looking and you'll receive plenty of comments encouraging you to eat. Curves are sexy, but rolls of skin and cellulite are not.
CAITLIN:If two women are wearing the same tank top and one woman has a larger chest than the other, then it's indecent and they really need to cover themselves up. As a matter of fact, I'm pretty certain that in my middle school there was a whole dress code and it was specifically for young girls, and it was taught that it was to the boys' benefit because it would be distracting. Just imagine that for a moment it's a hot day and the school's AC is broken. Boys are allowed to wear tank tops and to keep themselves cool and comfortable, but girls are not. Their basic fundamentals of comfort are dictated by older men and by systems to benefit young boys. My comfort needs approval of the opposite sex. This is the expectation and guideline set for me even while I'm developing body and mind in my adolescence. How diminishing and utterly humiliating this starts to lay the foundation of an entire gender's way of thinking about themselves for the rest of their lives. It is enforced that my comfort is not as important, but it's insignificant.
CAITLIN:Anyway, I could talk on this topic for the entire rest of the episode, and that's not why I'm here Thinking about all the instances of double standards and justices and misogyny that has become ingrained into my life and culture. It did not strengthen my resolve. I had to make a decision to physically alter my body in a way that would be taking away the only physicality of my appearance that makes me outwardly feminine. At this point. I'm already bald, I just had a baby, my body does not feel like my own, as most new mothers' bodies don't, and now I have to quite literally cut off the very parts of my body that make me a woman to outsiders, parts of my body that are intended to nourish and breathe life into my child.
CAITLIN:I'd also like to share something that I don't think is normalized enough, and that's the fact that if you are under mid-40s, 50s or 60s when you're diagnosed with cancer as a woman and need some type of chemotherapy, a lot of these chemotherapy treatments can force your body into menopause. This is why most women under a certain age are encouraged to freeze some of their eggs prior to treatment, in case the option to carry a child is no longer viable afterwards. I, of course, could not do this, as I was already pregnant, but this did happen to me. I went from having a baby to immediately being forced into menopause. I had to live with the effects of my reproductive body shutting down. It was exhausting, and sitting here or talking about it, I forget just how much I endured and how much came with this process. It was just one thing after another how I could be negatively affected as somebody that, as I mentioned before, I had never taken any prescriptions for anything. But another symptom that came from this treatment was me suddenly suffering from heart failure. The treatment affected my heart in such a way I needed to start seeing a cardiologist and go on medications that kept me up at night. They made it nearly impossible to get out of bed, all because my heart was not pumping out enough blood.
CAITLIN:Also going through chemo, also going through menopause. I also dealt with an immense amount of gastrointestinal issues and pain. It is still embarrassing to talk about, especially in this sort of setting, and I'm not going to get into the details for my own sanity. But what I can share is that there was always a large amount of blood in the toilet. I had constant reminders all around me looking at my face covered in rash, spreading down my upper body, the pills, the immense amount of fatigue and exhaustion. Just to get up the stairs, I started to see every day the physical manifestations that I was dying. It felt like my body was giving up and I was slowly dying. All of this and now it's time for surgery. I was so scared, I was so sad. I was just stuck in a permanent grief that had seeped its way into every facet of my life.
CAITLIN:My first surgery was the bilateral mastectomy. I felt mutilated after this one For context, bilateral is an easier way of saying double so I had both of my breasts removed and their tissue. I also had a nipple-sparing mastectomy, which is what it sounds like. They spared my nipples. I found out afterwards that there is a pretty large chance that, because they're removing the tissue that my nipples could die, my body may not recover properly without the tissue that was there once before and my nipples may not receive adequate blood flow to sustain them. They could turn blue or purple and eventually shrivel up and die. They would need to be taken off. This was worst case scenario. Thankfully that did not happen. I can sit here proudly and say that I still have my nipples, but when I tell you the loss that I suffered when I finally looked at myself after that first surgery, I don't think the word howling does enough justice or is an effective enough illustration of the sorrow that came out of me. But that's the best I can come up with now.
CAITLIN:I went from having two breasts to having two hollow, concave, sunken voids in my chest with my nipples poking out through the folds in that hollow. It looked almost like if someone had taken a suction vacuum after they had cut everything off of me and sucked it back into my body. And then, as if it was not glamorous enough, I had two drains that were attached to either side of my chest, sort of underneath my armpits but a little lower next to my ribs on either side of me. These had to drain fluid out twice a day for several weeks and we had to measure that fluid and keep track of how much liquid was coming out of there. And in order to shower, kevin had rigged a tote bag strap to the back of my neck to clip the drains to. It's the only way I could shower, because you can't hold both drains and still wash yourself. That first shower I just hugged myself and sobbed in a way I don't think I ever have.
CAITLIN:For my first surgery, my sister had taken leave from her job to be with me and Kevin to be caretaker for Leo while Kevin was busy caring for me. Speaking about it now, I'm overwhelmed with gratitude for how much my sister did and how much Kevin did for me every single day. But after that first shower, I just remember her coming into the bathroom and I was still wet, barely covered in a row because of the bandages and the drains. I was sitting on top of the toilet seat. I felt unable to move, just frozen in grief, and I just held on to her waist and sobbed large, gut-wrenching sobs for what I had lost.
CAITLIN:About a month or two months after the first surgery, it was time for the second. I decided I wanted to go the reconstruction route. I actually had the privilege of talking with a couple of young women that had gone through a similar experience to mine, that decided they wanted to remain flat-chested and not do reconstruction. They opted for no reconstruction, no nipple sparing, deciding that all the extra time, surgeries, pain and risk subside effects were not worth it. One had actually had a massive piece of flowers tattooed across her chest in memory of what her body was before Now, celebrating the new beauty she found in herself without her breasts.
CAITLIN:I considered this, but ultimately, for me it wasn't just my outward show of femininity that was being removed and taken from me, it was parts of my body. To me it felt like looking down and suddenly not having knees. I had grown so used to my body. There was a comfort and security in how I looked. After all of this, after all I'd been through, I wanted to walk away looking somewhat like myself before, just as much as I could, holding onto that normal say, as much as I possibly could, just for familiarity alone. I wanted to be able to put on a bathing suit and it looked similar Maybe not exactly the same, but similar.
CAITLIN:The second surgery after confirmation that my nipples were going to make it was the expander surgery, because all my tissue had been removed from the chest. They needed to open me up again and place actual expanders inside to make room for the eventual implants. The expanders are well exactly what they sound like they expand, stretching the skin back out. After a couple weeks of healing you go back in office once a week and get fills, essentially injected with saline, until your skin can't take the pull, and then come back the next week and repeat this process over and over until you get back to where you want to be. From a pain perspective, these expanders, they were the worst part. The double mastectomy felt easier than that.
CAITLIN:I remember waking up from anesthesia, the second surgery in recovery, immediately sobbing. I woke up in so much pain, coming out of that dream state and then immediately greeted with the highest amount of physical anguish. It was horrible. I just remember sobbing and writhing around the hospital stretcher as the nurses tried multiple medications to help me Going home. The coming days were worse. The pain was unbearable. The only thing I could equate it to was those trash bag commercials where they're testing them out to show you the durability of the bag and they place a foot inside and pull the bag up around the person's leg. That's what my skin felt like for days on end. It was hard to sleep. I couldn't hold Leo. I wasn't able to hold him for months while healing from all these surgeries. That was hard.
CAITLIN:I was also on all sorts of pain medications which, if you've ever been on pain medications, you know there is a very specific gastro side effect. I'm just going to go ahead and say it it's constipation. So, with all my other gastro issues already, with this on top, I was really not in a good place. But the good news is that this unbearable pain subsided after about four to five days and when I was able to start getting fills, I started to feel a small bit optimistic. Watching myself and my body re-inflate like a balloon, to see my body start to look a little bit more like myself, scars and drains and stitches aside, gave me some hope. Finally, after a couple months of filling to get to where I wanted to be, I was ready for another surgery the swap. I have to say, at this point I started to feel like a pro for someone who had never had surgeries.
CAITLIN:I was so scared that first time, by the third being outside the OR with the anesthesiologist, started to feel familiar. That last surgery I remember the nurse to the anesthesiologist giving me quote something for my nerves and quote before the anesthesia. And then, after administering some of the anesthesia, someone asked how are you doing? I replied fine, I'm doing fine. They said oh okay, we don't typically get a response. We're going to go ahead and give you a bit more. Okay, I said After about 15 seconds or so I hear how's it going, caitlin? Again, I respond I'm doing good. I pause for a brief moment and then look the nurse beside me right in the eyes and say oh, wait, goodbye. And then I woke up in recovery.
CAITLIN:Another big part of the surgery was that they were going to need to take bat from some place else on my body and put it on my chest to help make the implants look more realistic, because I had no skin or tissue left on my chest. They were essentially injecting fat around the implant itself to disguise the edges and the creases. My surgeon wanted to take it from my legs or my hips, but since I had just had a baby and had been bedridden on chemotherapy for months, I asked if I could take it from my abdomen. Apparently, abdominal fat is the closest to resembling breast tissue. The surgeon was apprehensive because, god forbid, anything went wrong and my body rejected the implants. They would have to reconstruct my breasts from pure body fat. She of course wanted to save as much from my stomach just in case, but after a long consideration I decided I just wanted it gone.
CAITLIN:I've always been very skinny my whole life and after having a baby and then again, like I said, being bedridden for months and months, unable to exercise or move, you can have a imagine my body looked a lot different than it had previously. After all this, the major surgeries and all the reconstruction, my image of myself, my physical body, has just been completely distorted. I'd like to say now, a year later, I'm coming to terms with that and that it's gotten easier, but it's still very fresh. I think, like any traumatic event, time does help, but I definitely don't think that makes it easier. Even being fully clothed and living my life, I'm still very aware that my body does not feel like my own. I am obviously acutely aware of this fact when I bathe or I get dressed. Pregnancy alone is typically enough to drastically alter a woman's perspective of their own self.
CAITLIN:Still on birth, chemotherapy, menopause, three surgeries, little to no physical activity due to weakness, I have no idea who I am. Most days, when I look in the mirror, I don't quite know how to describe the feeling. Something had and has been taken from me, something I know now I will never, ever get back. I do think, if it's any consolation, feeling healthy is the greatest gift of all, and when I say I'm feeling healthy, I mean it in the most normal way possible, in the way that I took for granted every single day before this happened to me. Being able to walk now for a mile outside, to being able to stand on my own two feet for longer than 45 minutes to prepare a meal, for having a glass of wine, to unwind, being able to hug Kevin, being able to hold my son All are examples of normal daily happenings in life that you don't cherish or think about until you just can't do it. I am so happy to be here.
CAITLIN:There are some days that I still feel the pull of disappointment or suffering at the realization of my own story. There are even some days I wish I could get back my lost time. There are even days that it's hard for me to just have patience, because if this experience has gifted me anything, it is the urgency in which I need to live. The opposite of that, of course, is the disappointment that I am unable to achieve the things that I want to so urgently. But it's all just a balance and I'm still working through it. I'm not perfect. I still need to remember to give myself plenty of grace, because this isn't something you just bounce back from. It's been a long road and there is still a long road in front of me. I'm just thankful to still be traveling on this road.
CAITLIN:I want to take this opportunity to say thank you to anyone and everyone in my life that has extended a hand in this process, whether it has been my family, my friends, my support team at the hospital, my chemo nurse. Shout out to Sarah you made this horrible experience so much more bearable. A thousand thanks for what it is you do every day, for my colleagues that became close friends, or gratitude for even the stranger that gave me a compliment while I was bald and pregnant. I appreciate each and every one of you. This experience has definitely opened up my eyes and made me very aware of who truly has my back, who, when all hope seems lost, when I was so depleted down to nothing, would still show up and tell me that we're thinking of me.
CAITLIN:Thank you all for being my village, as always, if anyone is listening that is going through anything similar to my experience, I truly want you to know that you're so strong, you are graceful, you're gorgeous, you're so beautiful, even when you don't feel like it, even when you look in the mirror and you do not recognize the person staring back at you. You are capable of fighting and so much more. If I can do this, you can absolutely do this. You are light and you are love. Please choose love here.