June 6, Tuesday. Woke up around 8 am maybe? Kim had to leave for work around 9:30 am. Woke up, turned over to Kim, he embraced me, I started crying. Snuggles most of the morning. He got ready for work, looked at me, “you’re leaving??” I said, the crying starting again, “no, no, I can stay a while longer” and gets back in bed to snuggle me while I sob. Ok, time for him to go. Says goodbye to me, says goodbye to my boobs and goes downstairs while I go take a shower (since I won’t be able to take a full shower for 2 weeks, UGHHHH MAN COME ON THAT’S SO LONGGGG (hehehehehe hahahah hohohoho, thanks doc!). I was finishing up some cleaning around the house as I won’t be able to do much after surgery. Can’t lift over 5 pounds (1/2 gallon of milk) for 6 weeks, holy shit. Packed everything up. Aunt Noreen arrived around 12:30 pm, she was staying until Sunday. Someone who had the same surgery as me said they didn’t have anyone take care of them after, HA, not me girlfriend, not me. We were catching the 1:20 pm train into the city. Off we go.
We got in around 2:45 pm, checked into the hotel and started walking up to the Breast Center. A few days ago, I think I talked about this, someone called me from my breast surgeons office. They are doing a research study on lymphedema. I thought I would give back because this can help others in the future. We got there around 4 pm. Two research assistants took me in, measured both my arms, did a few other things and we were out the door. We went down to the third floor as I haven’t seen Karen, the NP, or Dr. Larry Norton for months and was going to stop in and see if Karen was there, I didn’t expect Dr. Norton to be available, busy man. She was there, we walked back and she gave me a big hug. She said I looked great, awww shucks stop it. We reviewed a few things and then Larry Norton walked out of a room, DR. NORTON. Karen said, “Caitlin O’Neill, you remember her right?” … “yes of course”, lol. We talked about what I was doing next and he said “we all talk, we talk with those at Basking Ridge, we will all make the decision together”. I am assuming he was talking about radiation and anything else we need to do. They are great people. MSK is truly the most amazing place ever, and I haven’t even told you the rest. We left, went back to the hotel, relaxed, dad arrived, walked to dinner around the corner from the hotel, came home, ate some mini Ben & Jerry’s and I was in bed by 8:30 pm watching Bravo.
I was surprisingly calm all day, I thought I would be a mess. I gave myself permission to take ativan during the day on Monday and Tuesday if I needed to function but I didn’t really need it. I did take some at 4 pm on Tuesday as I was becoming overwhelmed with walking around, pretending like I wasn’t getting my boobs taken off tomorrow. I am not sure what was going on. Was it acceptance? Was it denial? Was it ignorance? Was it Kim telling me everything will be ok and it doesn’t matter and we will get through this like we have everything else? Probably all of the above. Kim texted me during the day while he was at work. He told me when he walked downstairs after saying goodbye to me he was feeling a lot of emotions (which is quite unlike him). I asked him if he cried, he said almost (THAT’S A LOT FOR HIM). Kim can remember one other time he cried and it was over 15 years ago. He said that after chemo ended, he lost track of everything and now it’s time for the procedure and it brings it all back to reality and how he’s really sad for what I am going through. Me too, it is sad, just really sad. As I usually say, I am 28, I’ve already been through chemo, now I am getting my boobs taken off, like SHITTTTTTT. This is incredibly hard for him I am sure. To deal with my emotions, one, and to deal with the fact his gf will be getting her boobs removed. Have I told you they take off my nipples too? I was kind of skirting around that. They do that because you can get cancer in your nipples, sigh. I will be making an appointment with Vinnie Myers to get some nipple tattoos but that will be quite down the line.
I had to take a shower the night before with this to ward off germs! Called Kim. It was 9:30 pm, ativan, bed.
June 7, 2017. Wednesday. Surgery day. Woke up first at 5:30 am then went back to bed until 7:30 am. Dad came in and gave me a kiss on the forehead. I had to shower again with the antibacterial soap, so many showers. I thought it was ok though since again, I won’t be showering for a while (yes I will wash down there, I’m not a monster). Took a shower, got dressed and we were off around 8 am. We had to be at the surgery center at 8:45 am. We took a cab as I just didn’t feel like walking. We were on our way there and we had to go to 60th street. The cab was going up to 64th and turned right, I thought, ok, maybe this is the only way you can go, as many of the streets are one way. Then he turned left to go up town, “SIR, 60TH STREET”, not yelling, just full of tone. Oh, I thought you said 66th. “Let’s get out, I need to get out”. Couldn’t deal. We then walked down a few blocks and it was ok.
I was getting surgery at the Josie Robertson Surgery Center. I mean, let’s talk about amazing. You walk in, and everyone is so nice, as they are 99.9% of the time at any MSK facility. The man checked me in and then walked us into the elevator, in which you pick the floor you’re going to from the outside, not sure what’s up with that, and took us upstairs to the floor we needed to go to, 3 (or 6, I forget), and let us out. How adorable. It was amazing. This place was built 1.5 years ago, truly lucky. Everything state of the art. It was right next to the Ed Koch Queensboro Bridge.
They had buttons on them which I later found out meant nothing and I could have been pressing it way before, UGH. I was wearing my LV scarf on my head, because, obviously, and the woman at the desk said, “you’re going to give me the scarf when you’re done with it right? You don’t need it with those beautiful blue eyes you have”. Sigh, I don’t even care if it was pity surgery attention or pity cancer attention, people are just nice. She walked us around the waiting room and brought us to the procedure board (I forget what it was called, the update board?). It was a board that was electronic that had everyone who was admitted into the surgery center with their initials and then birthday so mine was CO0812. It showed you where they were, either “checked in” … “pre-op” … “surgery” … “recovery” … “room”. PRETTY FUCKING AMAZING. We sat down and waited for my pre-op room to be ready. We knew there would be some sort of coffee there, but there was an entire Starbucks, holy crap. MSK is TRULY AMAZING. About 15 minutes of sitting and we were brought up to the room by a nice gentleman.
We walked in, it was around 9:30 am. I was told to change into my gown and go pee for ANOTHER FUCKING PREGNANCY TEST. Not, preggers. Came back in and then the surgeon came in, Dr. Heerdt. The tears started. She said everything is going to be ok, we are ready, it is going to go great. Ed starts crying. The surgeon almost starts crying, NO YOU CAN’T CRY. (Oh, starting to cry now, shit). Anyway, she made me feel good, she’s an amazing surgeon and an amazing person. The surgeon leaves and we sit in the room and then the anesthesiologist comes in. She said you can get something called a nerve block. They give you something in your back, some type of anesthesia. She said not everyone does it but for this surgery it is good because the nerve cells come from the spine that are in the breast. I said, well do you recommend it, she said yes, ok, let’s do it then. It also decreases your need for pain medication in the long run which is always good (I wonder how my insurance company will feel about it, no joke, I had that thought but then thought, don’t care). I don’t think I will get addicted to pain meds but it is always in the back of my head when I get a prescription for something like oxycodone, I mean, I won’t get addicted. We hung out for a bit more and the nurse started asking me questions. They ask you your name, the surgery you are getting and your birthday a million times, because obviously if they have the wrong person, that shit ain’t good. Then the anesthesiologist came in and wanted to start the nerve block. Texted Kim, “ok, this is it. Love you more than life” … “you got this babe. Love YOU more than life”. Phone off, given to dad, they were asked to leave the room.
Okay, I had no idea what this nerve block included and I guess I should have asked more questions. I thought it was going to happen in the OR and I would have no idea what was going on. Nope. Two doctors came in and two nurses and it all started like a whirlwind. “Okay, you’re going to lay on your stomach” … oh, ok. They had an ultrasound machine and just started drawing on my back. WTF is happening. I had to move all the way to the right of the bed to have my one hand basically hitting the floor. Tears started flowing and then I started to realize this was it, the last few things I will remember before surgery, heavy sobs followed. “It’s ok Caitlin, this is normal, we know you are nervous, we will give you something to make it better” … a nurse came to the side of me holding my hand asking me the same questions, name, birthday, surgery. I eventually fell asleep. The next thing I remember is laying in bed trying to keep my eyes open. Apparently I asked for a picture of dad and I, I looked DOPEDDDD.
It was time for surgery, I would say around 11:30 am? I came alive for this. Tears started, Ed started crying, I cried harder, Ed cried harder, “love you” said a million times. Off to surgery. Fell back to sleep. Woke up right before going into the OR. Dr. Heerdt was there holding my hand saying it will be ok, she is really an angel. The OR nurse came out and asked me again; name, birthdate and surgery. The last thing I remember as I moved myself over onto the operating table was asking, “can you weigh my boobs?? I want to know how much they weigh!”, me and my friends and Kim and I have always wondered, lol.
Wednesday night was quite a fog. I believe I got to the room around 5-6 pm? The nurse wanted me to rest so they didn’t call my dad and aunt up which was a little weird. I wasn’t hungry at all even though I hadn’t eaten for about 24 hours at that point. I was getting pain meds and was still drugged on the anesthesia. Around 8 pm I asked for my dad and they said they will call him to come up. They said the surgery took an hour longer than expected, the plastic surgeon was in there for an hour longer than Dr. Heerdt thought. Dad spoke to the nurse and she said “oh, he will make sure those stitches are perfect before he finishes”. Phew, but dad was worried and clearly exhausted after a longggg day.
I got my phone back with an abundance of messages of course, called Kim, not sure what we even talked about, then called mom and Nate, again not sure what we talked about. My throat was hoarse because of the tube that was down my throat. The NP came in and looked at my incisions, I looked away, I sure as hell wasn’t ready for that.
IV fluids were pumping and I had to go to the bathroom. I got up, with help from the nurse and nurses aid. Get to the toilet, pee, which was being caught in a little cup in the toilet so they could measure it, wiped (myself), got up and washed my hands. I couldn’t even press the soap, the nurse had to. I went back and there was a seat with a little pee pad on it, “uhhh that’s for me?” … “yes, we want you to sit” … but I just got out of surgery you assholes. I didn’t mean that, just thoughts, everyone at MSK was amazing, I just didn’t want to sit at allllllllllll. I sat on the chair for I have no idea how long before I started to get nauseous.
They were looking for the bucket, it was in the bathroom, ha. Gave it to me, then for some reason I wanted to get up and go to the toilet, I mean I didn’t want to throw up in front of everyone, I didn’t want to throw up at all because the pain would be unbelievable. I eventually made it to the bathroom and leaned down, putting all my weight in my legs. I was feeling dizzy at this point so I got up, turned around, sat on the toilet and … darkness. The next thing I remember is “CAITLIN, OPEN YOUR EYES, CAITLIN, OPEN YOUR EYES”. Shit, I couldn’t. They didn’t want to stay open, I felt like I was so freakin’ tired and my eyelids weighed 1 million pounds. Eventually I heard a deep voice, “KATE” … “WAKE UP!”, eyes were open and I was walking, that was Ed with his arms crossed looking at me. When Ed yells, you listen. I finally got back to bed which seemed like a mile and I came to. There were more tears and “where’s my daddy”, always a baby Kay. Dad held my hand while the NP explained a lot, they were all great. It is pretty normal for this to happen and they said in young people it is even more common. I think she looked at my incisions again. She said the surgical fellow would come in and check the incisions again.
Around 11 pm I believe the surgical fellow came in with a different NP to look at the incisions and I said, “ok, I’m ready to see it”, I glanced down, it wasn’t terrible! The surgical line goes across each breast, about 3 inches long and it is as thin as floss, pretty fucking amazing, basically looks healed. HOW? I told the surgical fellow that I think I was really leaning on people when I passed out, is this bad? He said no, phew. A bunch of the nurses, NP and charge nurse were coming in asking me about Megan… who is Megan??? I thought. They said she is an NP who works at a different building and she is checking in on you. Hmmmm, Megan? Am I that drugged I don’t know who this is? “She is a friend of Karen, she wants me to check in on you, making sure you’re getting the best care”. SO AMAZING. Mrs. Dilella, you’re an angel. People checking in on me who I don’t even know, humans are amazing.
The night went like this; Ed slept on the pull out couch, I fell asleep for 2 hours at a time, needed to pee every two hours, up and down, up at 3 am, starving, eating the crackers next to me and asked for ginger ale and it tasted quiteeeee good, watched Girls on my phone with my Bose head phones. It wasn’t a terrible set up. We had a great view of the Ed Koch bridge lit up.
Dr. Heerdt starts making her rounds at 5 am, she was in my room by 5:04 am. Took a look at my incisions, says it really looks great and all the tissue she took out looks good. The lymph nodes were hollow, the tissue she took out looked good, nothing touching the muscle or skin, we just need pathology to really look at it and tell us more. At that point Ed and I were kind of up. I asked for an oxycodone at 4:30 am, only half, and then she said if you still feel pain we will give you the other half at 5 am. Welp, I needed it. The drugs and nerve block were all wearing off and, damn, it was time to hit. Ed was up, got himself some coffee and oatmeal. We asked the nurse what time breakfast came, I was starving, she said around 7-7:30 am but they don’t serve you. They want you to walk and get it yourself. Eyes rolling. Can’t catch a break around here. Around 7 am something happened, my chest became VERY tight and I could not get comfortable at all, tears started. The nurse came in and gave me 0.25 mg of ativan, they recommend it for release of the tightening muscles. Got that IV and felt better, went to sleep for about an hour. Ed left to catch the train to head back to NJ to bring the car for the ride home.
A volunteer came in. She was a young woman. She said she was once a patient at MSK, my eyebrows (what I have) lifted and my ears opened. She had stage 3 breast cancer, that she found after going to the doctor for a rash on her body, this can be a symptom of inflammatory breast cancer, A FUCKING RASH. She did basically everything I did; chemo, mastectomy, radiation, reconstruction, lost her hair, the whole shebang. It was great to talk to her and she said everyday will be better.
The nurse came back in and said I was due for pain meds if I needed them, of course I did. She said I had to eat something first and wanted me to walk to get the food. Nope. Aunt Noreen got some muffins and a bagel. I scarfed it down then took more meds. I was feeling better and feeling like I could actually go home today, not like before. I had to get up to pee. I called the nurse again because, I mean, I needed help? I asked her if I should be doing this on my own by now, she said yes, since you’re going home. Oh. Ok. At that point I was just ready to go. Got dressed, dad arrived and that was pretty much it. The meds were all given to us with explanation, packed the bags and took the elevator down. I didn’t use a wheelchair because, I mean if you’re sending me home, I probably shouldn’t use a wheelchair to get to the car.
I got in the front seat with the seat laid back already, we lifted it a little more and I was pretty comfortable actually. Seatbelt over my waist and the top part put behind the head of the seat. Took more Ativan for the ride. It really helped the anxiety of bumps and jumps. Took us about an hour and twenty minutes to get home. Dad walked me to the front door holding my hand, “we made it” I said. Relief came upon both of us. Poor dad probably scared every second of driving home. He may have been more exhausted than me after all of this. Up to bed for me, pain meds, sleep.
It was fucking over.