How to Survive a Menty B breaks down medical trauma and illness-induced PTSD with me, a therapist with both PTSD and a Ph.D.
This is my survival guide, my survival story, and my survivor legacy.
How to Survive a Menty B is a library for people navigating the upheaval of medical trauma and PTSD. With each post, I explore a new topic and dissect the role of medical trauma in daily life and relationships.
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How I Lost Another Breast
Medical Trauma Journal
Tuesday 11/23/21
I didn’t like any of my choices but I had to try and sleep. I slept pretty terribly in my plastic bed in a noisy hospital. My jaw and my teeth were sore from clenching them in my dreams.
But I woke up to the news. Dr Dayan said I needed surgery, and he needed to take the expander out. There’s an infection in my right breast, and there is no way to get it all out unless they go in and remove the expander and scrape all of the infection out.
I will eventually have an expander back in there, but in the meantime, they are leaving all the skin behind and sewing it to my chest wall with nothing in there. An empty pillowcase sewed to my chest. I will have a deflated boob and another drain for a bit.
For a few weeks, I will have this unsightly situation for a breast. He said, “NOT months, but weeks.”
So, I hope I don't hold on to that and get disappointed again. By the end of the year, I'll be able to move again more normally. Ugh.
Matt headed home to get stuff for me since I will be here until Friday. Maybe I'll get to go home for Thanksgiving, but I'm not hanging my hat on that. I'm expecting hospital Thanksgiving.
Everyone's bummed, me included. I have to do what they say. I must keep returning, showing up, and fighting like any other day. At some point...at some damn point, I will be past this.
I'm tired and sick, and I feel old and crazy. My head and body don't know what to make of all this. It's all different. This wipes everything clean—all routines, habits, and plans.
I want it to be past the hard part. Maybe I am, and I don't even know. And maybe it's worse than I could imagine.
Wednesday 11/24/21
I had surgery last night. I waited all day without food or water, in pain, and feeling like shit. But finally, they got me and whisked me upstairs. I found out I was an "emergency surgery."
Since I am in the main hospital, there are many operating rooms and huge surgical areas on that floor. This place is completely different from the surgical center where I have had my past surgeries.
I was wheeled into a big, bright room with lights and cameras, and everyone buzzed around doing a job. No one really talked to me, but they spoke to each other around me. I don’t think they were clear on what was happening before I arrived since some people seemed to be just getting up to date on the case.
They gave me some meds, and the mask came down on my mouth, and away I went.
I woke up in the recovery area in, by far, the worst pain of my life.
The fucking drain hole. Oh my god, the drain hole hurt. I felt like someone was holding a hot poker into my side, and I couldn’t stop them. Is the screaming coming from inside of me or outside? It’s so loud in here.
I could feel everything about that hole, and nothing else could enter my mind.
So, my brain gave me a gift. Blaring and bouncing in my mind came “Don’t Drop That Thun Thun” so loud that I had another thought. Ok, that?!?
I took in some of the information around me: It’s dark. I’m not alone. I’m in a big room separated by thin curtains. Someone comes to check on me, and I can’t see their face.
I was constantly asked to scale my pain and given meds every 15 minutes until it would come down, but it never did.
I was scaling my pain at a 9 for a while. Tears came out of my eyes for at least 30 minutes before there was any movement at all. And we crept so slowly down that I was worried there wouldn't be anything to help me. At some point, he'd have to cut off the drips and drops he gave me and how I would do it.
I would feel the Dilaudid go into my veins, and I'd feel it course through my body and up my neck, and that's it. It was the same thing I hated about morphine. It's a super short-term, weird physical sensation with nothing to address the pain.
Eventually, finally, through fails and half-point movements, I reached a point where I could have other thoughts.
It was dark, so even though I'd try to peek, I couldn't see much in my bra.
Every time the faceless man took my vitals, my blood pressure was too high. Proof I was still in a ton of pain.
I started to notice that I bit my tongue badly while I was under. What the hell happened in there?
All I could do was breathe in for four and out for four while I scaled my pain the same in 15-minute increments over and over and over again. This landed me in recovery for a while. I didn't get back to the room until after 12:30 a.m. Once I got back and got settled, I just wanted Matt near me. I told him how hard it had been and that I needed him to hold my hand and pet my head until I went to sleep. I was like a traumatized animal or a child. My body really went through it.
They woke me up and checked my wound, so I peeked. A shriveled witch's tit. A cake that collapsed in the middle. Deflated balloon. But I was ok.
The primary wound had a cover, so I didn't get a clear look until later.
Despite not sleeping much or very well, by the time morning came, I felt quite a bit better—no shitty feeling in my body, normal blood pressure, no achy sick, exhausted, fatigue.
I legitimately felt better. I got checked on and ultimately got a good report and a plan to go home.
Thursday 11/25/21
My head is all over the place. I feel better, and the heaviness of this shit is weighing on me.
With the holiday traffic, it took us three and a half hours to get home yesterday. I am tired. I am tired of my bones. And I am sad. I finally cried about everything. It's just so fucking hard, and I feel like this has taken so much from me, and I don't know what is left. I keep giving myself to this process and fear there will be a time when I don’t have anything left.
Matt was excellent through the whole thing. He picked up the slack and supported me well. He handled this one on his own. I hope he feels proud of himself.
It's officially two years since I have seen my sister, and I can't deal with this. My heart is still broken into a million pieces, and I am sad.
It's impossible to know what it's like not to have a breast until you don't have one.
In the bilateral mastectomy, I went to sleep with two breasts and woke up after a switch-a-roo to two breast mounds. The discomfort of having the tissue expanders in feels like something—a sensation, at least.
Today, I feel like I had an amputation. I have a shriveled, mangled wad of skin crumpled up and sewed onto my chest. And my breast is gone. I know it was gone a month ago, but psychologically, it had only been a switch, like changing to the generic brand of something. But now, it's gone.
My body has permanently changed shape.
It's never going to be accurate or the same again. And this is just a harsh reminder.
The mental fortitude required for this one is rough. It's an actual change forever. It's a massive adjustment to moving through the world, even with just one side gone. My posture feels different and uneven. The weight of the tissue expander is heavy now that there is nothing on the other side to feel balanced.
I see the bags under my eyes; all I can think of is how much is gone. My life has been drained, and every possible link to anything is destroyed.
I'm in a bad headspace today. I can feel it all. My body feels the trauma I went through, and my mind sees the horror and the wreckage, and my emotions are shot to shit. I'm sad. I feel hopeless today.
I know cognitively, it will all work out, and I have to wait. But I can't see a way through this that isn't sad and disappointing—a faint glimmer of the life I was building towards. I'll find the meaning and make something out of it.
But for today, I am so robbed and violated.
I have so much to be grateful for. And I do feel that feeling inside of me genuinely. It's endless how beautiful the world is sometimes.
But I keep getting pushed and pushed and pushed, and I want to be worthy of it. But today, I need a rest. I want everything to be manageable today.
Friday 11/26/21
I notice all the self-conscious thoughts about my body. No matter how much I sleep or rest, I am always tired and hurt. I don't see my hands anymore when I look down or see my face in the mirror.
I tried last night to find out when I lost myself. I scrolled through pictures and pictures over the previous year, trying to find when exactly I lost myself and slipped away. When did it go from being me to being a shadow? What will be left when this is done?
I looked at older pictures of myself, like high school and early college, and I didn't recognize her either. I remember her spirit, but I don't remember having her face. Will I lose this me just the same? It's like I am okay with losing the older versions of me because they are outgrown, and I'm OK with that. There are parts I am happy to leave behind about being a teenager and being in my 20s. I wasn't ready to lose those when I did either, and the process was painful every time. I have only really been able to find myself in difficult times.
In the meantime, this negative body image is killing me. I feel hideous to the outside world. I still totally think I am worthy and love myself, but I do see what other people would see, and I know it's not pleasing to the eye. Like at all, at all.
Friday 11/27/21
My drain isn't bothering me this time, and it's hardly draining anything. Hopefully, it'll come out next week. I guess this is what it was supposed to be like instead of the infected version that I had before.
Monday 11/29/21
I just got a call from the infectious diseases department at MSKCC. They said that they found antibiotic-resistant bacteria in my breast pocket from the surgery, so whatever is left in there is just hanging out and not dying. I have to return to the hospital tomorrow, get a PICC line, and then get antibiotic infusions every 8 hours for 7-10 days.
I'm numb. I feel disappointed and sad. This is entirely wild, and I can't process it.
And what if a PICC line doesn't work? Am I in danger again? Fuck.
I wonder how many times it’ll feel like this will never end.