I was diagnosed with breast cancer on November 23rd, 2016 at 12:30 pm, my father’s 60th birthday. I was with my mother, Hillary and Rebeka, all of us falling to the floor. I barely remember those days, I think I blacked them out. How did I even work? How did I function? Since then, I’ve received 16 rounds of chemotherapy; 4 AC & 12 taxol. I have gotten blood drawn 20+ times and have taken 10+ pregnancy tests. I have cried, maybe, 30+ times. I have a port placed in my chest that looks like a marble under my skin. I have 6 new scars; 2 being greater than 3 inches long across my breasts and 2 foreign objects that I now call my boobs. I went for my radiation simulation the other day in which I gained 7 new permanent tattoos surrounding my right breast so they know where to radiate.
One would think when the doctor tells you, you are “cancer free” or NED (no evidence of disease), your life would be incredibly peachy. While, yes, it is quite good, but life is still hard.
I am recovering well from surgery, hitting all the marks I should be, truly feeling like I’m moving forward. There was a day when I cried twice during a 15 minute period while trying to take off a dress over my head because I just couldn’t move my arms in the direction I wanted. No one was there to help me and I thought, “am I going to have to keep this dress on until Kim comes home?”. Eventually I got it off and the tears continued as I laid in bed thinking how fucking helpless I was. Helplessness is a pain worse than any surgical wound, muscle pain or chemo. It hurts your soul.
Every single thing that happens to me, I think, “is this cancer?”. How long will this last? My neck muscle is sore from the muscles in my armpit being cut during surgery and it is causing me to feel like the glands are swollen in my neck. Are they though? Then I keep touching them to see if they are swollen, is that making them swollen? Or are they swollen because there is some sort of cancer that got through the cracks? These are constant thoughts in my head. How long will this last? A year? 5 years, until they say my risk really goes down? Forever? I’m not sure.
My hair has started to grow back, it’s less than an inch long. Some of the hairs are longer, but they are the blonde whisps that started growing right after chemo. I’m not at the point to wear no wig yet, however I wear a baseball cap majority of the time. (Just felt my neck glands). The hair everywhere else is growing like a weed and it’s annoying!
I will be starting radiation on July 27th and my last day will be August 30th. I’m excited to end radiation before September and start the Fall off on a new leaf (Fall, leaf, not on purpose). After radiation I really feel like the worst is behind us. All of us; me, Kim, my family (Kim’s family which I include in my own) & my friends (which I also include in my family) and you all (hey, you’re family too!).
I have gained all of these permanent markings on my body that you can see as well as ones that you cannot. My heart has grown a few sizes like in The Grinch. The love for those around me has grown. My love for technology has grown. My love for medicine has grown. (Just felt my neck glands again).
I will never be the same person I was. The person on November 22nd, 2016 is not the same person I am today. I am thankful for this ride in ways you wouldn’t expect and won’t understand (and hope you never have to). I hope I have taught you things during this journey as well. Are we on the home stretch? I guess you can say we are. We’ve got this!
June 16, 2017. Friday. After yesterday’s longggg day of walking I was going to stay inside all day, duh. Woke up and made an egg and cheese on a defrosted everything bagel. Shit, those bagels are difficult to defrost well after being frozen, sigh. I was going to go to the local bagel place but then, it was 10:30 am and I was starving. Made my bagel, couch, relaxation. Mama came up around 1 pm. She asked if I needed anything, DONUTS I said. Sigh, I’m becoming a chunky monkey and I just don’t care right now. Before she came I made some coffee to enjoy with my donut. She came in with half a dozen, yum. I went to get some milk for my coffee, it was bad, or was it? The date was still nearly a week off but, ugh, do you smell those types of things whenever you take it out of the fridge?? I do, even if it was purchased yesterday. I’m not sure why, spoiled milk is just GROSS. I made mom smell it against her will, she said it was bad too. (Later that day while telling Kim… “I put that in my coffee this morning! And quite a lot!”… awkward). I had some black coffee with my donut, still delicious. We hung out for a few hours gabbing about life. She left and Angie was on her way up with dinner, with the makings of a perfect chicken caeser salad; grilled chicken, lettuce, dressing, croutons, parm, tomatoes AND some cheddar cheese from her recent trip to Vermont, with wheat thins and triscuits, YUM. I used to not like triscuits, the texture was weird but dang, there’s something quite enjoyable about them now, oh aging.
Angie stayed for a while enjoying some cheese and crackers with me. The book she lent me was on the coffee table, The Handmaids Tale. I obviously didn’t read it because I don’t read, yes, one of my few flaws, my mind just RACES. I literally went to read a book my dad gave me right before writing this blog and then, stopped to write this blog. Anyway, they have made the book into a Hulu series, we watched an episode. Shit is crazy, recommended if you like weird stuff as I do. Angie left around 7:30 pm when Kim was on his way home, Stires Stires everywhere. Kim came home, showered, drains, sleeps.
June 17, 2017. Saturday. Ummm sleeps. Side note. The other night when I was changing my drains, I had to change the bandage to the hole left over from pulling the drain out on my left side. My range of motion isn’t great but I wanted to do it myself, I tried, and tried and tried. Kim was sitting downstairs. I started crying… “Kim” … “yes honey” … tears really flowing … “I need your help”. He rushed upstairs probably thinking something was extremely wrong based on my bellows. “What’s wrong??” … “I need help”. It took him about 30 seconds, looked at me, “all done!” and kissed me. Oh, that was easy. Feeling helpless is a hard, hard feeling.
June 18, 2017. Sunday. Ed and Nate came over for Father’s Day brunch around 9:30 am. Coffee, bagels, chat, good morning. We were going to Kim’s parents for a BBQ. Kim wasn’t feeling well but felt good enough to go to dinner. It was the first time I was putting a wig, lashes and make up on since surgery! Kim was at a wake until late so Pat came to get me as I still can’t drive. Kim came in the house and I said, “do you even recognize me??” … nope, he said. So used to me being bald and make up-less. We had ribs, corn salad and rice for dinner, YUM. Home, drains, sleep.
June 19, 2017. Monday. Kim was off from work, YAY. I thought he would sleep in like he did last week. Nope, up by 8:30 am, pancakes on the stove by 9 am, yum. Aunt Cathy was making us dinner tonight; short ribs with polenta and a chocolate peanut butter cake. YUM. Today was a tough day. I am not sure if it was because of the rain or because I am 12 days post op and everything is kind of sinking in. I could not get comfortable for the life of me. I tried laying on the floor, NOPE. Eventually went upstairs to lay down. Kim knew I wasn’t doing too well, “honey, dinner is on the table”. Everything set, it was yummyyyyyy (Thanks Cath!!). I ate and went back up to bed, drain and sleep.
June 20, 2017. Tuesday. It was that time again for herceptin treatment, with 3 drains in. This is probably my low of this entire thing. I am bald, I have no eyelashes, no eyebrows, have three drains coming from my body, have no boobs and am getting a treatment. Sigh. I said to Kim one night, “this is literally the ugliest I will ever be”, he laughed. I mean it’s true, it’s not a, wahhh I’m so uglyyyyy (although, 2% of the time, maybe it is like that honestly). I can literally only go up from here, “you will think I’m reallyyyyyy pretty when I get all my hair back”, he laughed again. I mean it’s true?
Kim dropped me off at treatment on his way to work, dad was picking me up. Got my port accessed, got blood drawn and went upstairs to wait to see the doctor. I was called in quite fast. I saw the NP and then the doctor. They are all very happy with my pathology report of course and are very happy for me that surgery is over. I had treatment and it wasn’t too bad, although it was freezing. The warm blankets came in handy. I said to the nurse, “it’s freezing in here but ya know what, no hard nipples, silver lining!”. You have to find the humor in this shit, but really, it is pretty nice. I was done around 11 am and sat outside on a rocking chair waiting for dad, quite nice. We went back to my house, I was tired so went upstairs for an hour to nap while dad did some work. I had an appointment at 3 pm in the city to meet with Dr. Cordeiro, the plastic surgeon. We left around 1:30 pm, dad driving in. Parked, checked in around quarter of 3 and got called in at 3:05 pm.
The nurse came in and she said, so are we ready to take those drains out? I told her how much they were draining and she said, yup, they’re ready, YAHOO (!!!!!!!!!!!!!!!!!!!!). We were also going to “pump” my boobs up again. I think I have said before, the expanders/implants they put in have a magnet where they will poke through to push saline in to expand. So the nurse uses some contraption to find the magnet then puts dots around it so they know where to poke. They take a small needle and, poke, in.
She wanted to remove the drains first but then said, “no, let’s fill them up so any extra fluid moves into the drains”. Eek, I thought she would definitely take the drains out first, messing with my mind here. She lifted the chair a decent amount. I was pretty nervous for this. I was tired as we were driving into the city however this pepped me up. She made the dots and poke, we were in. Not bad at all, I am still pretty numb. I looked away as she filled it, I didn’t want to see it get bigger, kind of creepy. She said it is unnoticeable because it is so slow, she was right. However, when I looked down at the end, it did look bigger! Bigger boobies in 30 seconds or less y’all. On to the next one, the left one. This one hurt a little more because I have more sensation in this boob as the lymph nodes were not taken out. Done with both sides, now to take the drains out, UGHDKFJDLKFASHFLKDJFLKAJDSFKHLDKFJLKDJSFLAJFKAJDFLKA. I was really freakin’ nervous. Yes, I did get one drain out however now 3 more. Ugh. Honestly, how I get through pain these days; “nothing will be as bad as the day after having your boobs removed Kate, you can do this” end of conversation in my head. Also, TO BE DRAIN FREE WILL BE AMAZING. She went to the right side where there were two; deep breath, out, deep breath, out, deep breath, out. All drains OUT. Holy shit it was an amazing feeling.
I am thankful for these hard times as they make me appreciate life. Not many people in the world will know what it feels like to have 4 drains coming out of your body and the freedom you get when they get taken out. Not many people will know what it is like to get quite an important part of your sexual identity taken off and continue to live life (I mean, I could have lived without this but I am learning from it). After surgery I once said to Kim, “ya know what, I have thought about what it would be like if you got your penis (but probably said weiner) taken off and replaced with an implant” … “I don’t think they can do that” … “oh no, they can, and I would love you just the same”.
The plastic surgeon came in and said everything looked good. Stated I need to continue my stretches to get prepared for radiation and I can now go above 90 degrees, yahoo! However can still only lift 5 pounds or less. While I try to do this a lot of the time, it is quite difficult. Doors weight more than that, and my Brita and so many other things you wouldn’t even imagine. We were off, back home. Up to bed for me, long, tiring day. NOTHING TO DRAIN, thank goodness.
WARNING: picture below is not graphic but interesting (lol). So this is the picture I would text my friends and say, “look at my boobies!”. This is the bra that opened in the front that I wore for two weeks after surgery. I could finally stop wearing it the day the drains came out. You can see the drains hanging on the pink loops. This is real life y’all.
June 13, 2017. Tuesday. New Yorkkkkkkkkkk (in the Oprah voice). It was time for my first follow up after surgery, 6 days later, can’t believe it’s been 6 days. I took a bath, kind of. I still can’t shower in the breast region. Put the water on, sat on the edge of the tub and cleaned my feet, legs, stomach, YA KNOW, OTHER PARTS. Cleaned my arms but didn’t go into my armpits as I didn’t want anything dripping down in the drain region. I honestly didn’t know what to do with my armpits. I actually, lol don’t judge, took alcohol swabs and wiped them, I MEAN, NO GERMS YA KNOW. Wait, but I wiped my left armpit and then went to wipe my right armpit and WOW WEIRD FEELING OMG. I’m still pretty numb everywhere however they took the lymph nodes out of my right armpit so there were a lot more nerves cut, it feels so freakin’ weird I couldn’t fully wipe it. Welp, smelly right side here we come. I actually don’t think I smell, but hey, I might be a little bias. Also, I have been wiping my VV with some VV wipes, again, I’m not a total monster, just a mini monster. Ugh, all my secrets are out.
Dad was picking me up at 7:30 am for a 10 am appointment in the city. We usually train it but it was just too close to surgery and I’m not too mobile. I got in the car, we made a turn and I said, “oh no! I forgot my sheet!”. Ugh. I record my drainage on two pieces of paper and in order to get my drain out I have to show them they produce less than 30 ml in 24 hours, only one was ready to come out. We turned back and went to get it, then on the road again. Ed picked up fresh bagels for the leftover cream cheese I had. Quite delicious. I used to think bagels were the devil. I kind of still do but, I eat them. They are just so carbohydrate dense, they can be 4-6 slices of bread. I usually ask them to “scoop” out the center. Remember I’m a dietitian? I kind of forget.
There was quite a bit of traffic, we got in around 9:30 am, parked in a garage and walked a few blocks to the office. I was carrying my purse which was slightly too heavy, so dad carried it, HE’S A TROOPER. It was really warm that day. We got in 3 minutes before 10 am, perfect. Bathroom, sat down, 3 minute later, “Caitlin”. Sometimes it’s weird my name is Caitlin. No, not weird, but when I was young, until college, I went by Katie with a K. Why? Not sure.
Anyway, I went in myself, dad usually sits in the waiting room or in the doctors office for the meet and greet after. I was put in the same room I was in during my first appointment with the plastic surgeon, that felt nice. I walked around doing my exercises while waiting. After less than 5 minutes the nurse came in. She asked me if I had any questions. I just wanted to know if everything was normal that was happening; the drop of the implant, the one drain not changing color and staying red, the bruising on my left breast. All normal, she said. “Any drains less than 30 ml?” she asked. Yup, left #1. She was ready to take it out today. WOW, I’m scared, what will it feel like, will it hurt?? She said everyone says different things. She undid my bra, looks good, she said. She was looking at the drains on the left and brought over some scissors. Anytime she got near me I said, “ARE YOU TAKING IT OUT NOW??”. I will tell you when I do it she said. I asked if the doctor was coming in. “He’s not here today”. Oh. Well, this is interesting. I’m 6 days post op from getting my tits removed and the doctor isn’t here to look?? Sorry, that’s just how it was in my brain. If the nurse wasn’t SO confident in her answers I would be concerned but, she clearly does this on her own a lot.
She took the scissors and started to cut the stitches, “this might pinch” she said. I didn’t feel anything. “Okay, I’m going to take it out now” … “Ok! Ok! Can I hold your arm?????”. 1, 2, 3, PULL and out. It wasn’t terrible. Kim and Rebeka both asked me how it felt, Rebeka cringing when she asked. “THAT’S HOW IT FELT!” I said. It feels exactly how you would imagine a drain coming out, cringey. There was breast tissues, really just redness, in the drain, is that normal I asked, yup, she said. Everything weird seems normal unless it’s REALLY WEIRD. I also asked her about the sharp pain in my left breast, she said the drain is most likely on a nerve and it just happens. Sigh. I collected some extra stuff; gauze, alcohol swabs, etc. and we were on our way, a total of about 15 minutes. Sigh. The price you pay for MSK, rhyming queen.
I was craving an iced coffee so we walked towards Central Park as it is only two blocks from the office. Stopped at a food truck and got some and sat in Central Park. Dad read a page or two from a book that he was reading about Paris. I went to Paris a few years ago and plan on going back this Fall! We eventually went back to the car and home we went. I relaxed on the couch the rest of the afternoon. Kim came home and was happy to have a 7 limbed girlfriend rather than 8.
It was 8:45 pm and Kim and I were in bed, of course. I received a call form New York that I didn’t know. These days I don’t answer numbers I don’t know because 99% of the time it is NO ONE AND IT’S SO ANNOYING. Anyway, I decided to pick up for some reason… “hello, it’s Dr. Heerdt, how are you??”. Oh, just my guardian angel/breast surgeon calling. She wanted to give me the good news. This is what I heard; the pathology report is in, there was no cancer left in the lymph nodes and there was less than 1 mm in two spots in the breast and it’s not in the duct, it’s best case scenario, we are extremely happy. I wasn’t 100% sure what that meant/I heard the right thing, I was just really happy to hear best case scenario. I texted Hillary saying what I thought I heard then she starts to FaceTime me. Before picking up I looked at Kim and said, she’s going to be hysterical, and she was.
I think she just said, “you’re cancer free”.
June 14, 2017. Wednesday. Woke up and made scrambled eggs and an English muffin, all by myself! Kim was off to work and it was the first day I was on my own for a while. A little weird but pretty nice to have some Kay time (y’all know I love my Kay time). Literally laid on the couch all day. I’m the type of person who can do this all day on a Saturday or Sunday and apparently when I get my boobs removed. Eventually it will get old once these drains are removed.
Rebeka brought over dinner around 6:30 pm. Chipotle y’all. So delicious, and chips and guac. Ate about half and hung out the rest of the night. Rebeka cleaned the kitchen while Kim and I danced and watched her. We’re not bad people, she didn’t want us to help! Don’t mess with a woman with a goal of organization and cleanliness! Thankful for her. She left around 9 pm, drains and sleeps.
June 15, 2017. Thursday. Another appointment today but not until 3 pm. I made eggs and an English muffin again. I got dressed, wore moms large white button up with black spandex and my sneaks. Took me a good 15 minutes to put my socks and sneakers on, hence I ordered some slip on shoes. Around 11 am I walked to Starbucks to get some iced coffee and maybe a donut. I put my Rutgers cap on and went out. I haven’t been wearing my wigs because it just seems like so much work, but also I REALLY need to wash my red wig and I just haven’t, I’m a lazy person. Walked to Starbucks, order a tall iced coffee with a glazed donut, yum. I sometimes get a pump of hazelnut in it but getting the donut adds the sugar component. I feel people looking at me while I am there, I mean I would to. Is this a boy? Is this a girl? But they’re wearing pink shoes. My hair is really growing back but doesn’t look like actual hair like I cut it like that for a reason.
I got my drink and walked back home and sat on the couch. I was catching the 1:20 pm train to meet Ed in the city for my appointment with the breast surgeon. Kim and dad were both worried about me taking the train by myself. Ed’s worried I won’t be able to do something, Kim’s afraid I will fall and won’t be able to get back up. They aren’t wrong, but I made it. I walked down to the train station and got on the train all by myself.
I met dad at the cab line outside of Penn station. We decided to walk a bit to get out of the hustle of Penn Station before grabbing a cab, lesson learned. We were about an hour and a half early knowing we would walk some. It was beautiful it, not too hot, not too cold. We walked about 45 minutes before Kay needed a break. I haven’t walked much in the past 8 days. We stopped in Starbucks. I got a green/passion tea and dad got a mocha frappucino and we sat outside and enjoyed people watching.
A lot of Starbucks today huh?? We kept on walking and finally, after all these trips into the city, saw a famous person. Katie Couric! She was walking down the sidewalk in deep conversation with a man with two men following. I just pointed and said, “Katie Couric!”, dad stopped and turned around, “wow, cool!”. We kept walking, and walking, and walking. Kay was tired, and sweating.
We took the elevator up to the third floor, checked in and were called in within 4 minutes. I went into the exam room and Ed went into Dr. Heerdts office. I started doing my stretches, they recommend doing them 5 times a day, I try to stretch every time I get up. Dr. Heerdt and Anna, the PA walked in. I met Anna before my surgery, very, very nice. Dr. Heerdt unvelcroed my bra and said, “oh my, this looks great!!!”. I immediately asked about the pain in my left breast and the subsequent bruising that showed up. She said it’s not the implant dropping, there is swelling underneath. It looks like there was a bleed during surgery which would explain the swelling as well as the bruising. She was not concerned at all. The PA said my skin looks really good, not too stretched out or anything. Phew. Dr. Heerdt re-velcroed my bra and sat down. “Do you live with your dad?”, lol… “no my boyfriend” … “how long have you been together?” … “3.5 years” … “oh good, it’s been a long time, how is he dealing with this?” … “yeah, we moved in together two months before all of this started. He’s doing well, he’s an angel, the gold standard, an angel”. Kim is doing well, however he’s feeling this too, we all are.
Dr Heerdt started to explain the pathology report when I said my dads in the office if we want to go in there, “oh of course!” she said. We went in and she pulled out the pathology report. There were 3/22 lymph nodes affected by the cancer, 4 if you include the one that was taken out on November 21, 2016. All lymph nodes removed and she confirmed there were two small, less than 1 mm sections of the breast that still had cancer however they were in the duct therefore they “don’t count” she said. This later confirmed by Hillary that the smart folk are trying to clarify if the “cancer” inside the duct are really cancer or moreso pre-cancerous cells. Hillary says it’s not cancer so, the chemo killed it all. Wow. I had multiple questions for her.
Was the main tumor HER2+? They don’t know because it got obliterated by the chemo, so most likely yes.
What stage would you classify the cancer (because they told me they couldn’t really tell me exactly until they saw all lymph nodes involved)? She wasn’t sure as it was maybe 2 or 2b, maybe 3, but basically it doesn’t matter and they barely use staging anymore.
Radiation? Yes, since it was in the lymph nodes, sigh.
Do you notice any lymphedema? Nope.
Do I need physical therapy? You look like you’re moving very well so I wouldn’t recommend it at this time but if you need it then sure.
Can I travel after the drains are out? Yes, but no third world countries.
Can I said I’m NED (no evidence of disease) or cancer free? Both. Now technically, cancer free is aggressive. We DON’T KNOW if I’m cancer free that’s why people say NED because, yes, there could be tiny, tiny, tiny cells left, hence radiation. There’s no evidence at this time based on the pathology report however, right now, I feel confident saying cancer free.
Hi, my name is Caitlin Marie O’Neill and I am cancer free and this is how I feel..
June 8, Thursday. Oh, I will get through this, I thought as I woke up and the pain was significantly less than yesterday. It was a good feeling. The intense pain was no longer present except for the sharp pain I felt under my left breast. Is it my breast still? I mean, it looks like it, just no nipple, a scar across, but hey, other than that, it’s my boob! It’s a cute little bump. The doctor filled them with 240 cc, which is quite a bit more than normal. I’ve googled it and without any true confirmation, it’s about a B, maybe large A? Holy crap. Guys my bra size before was 32FF (!!). No one really believes me when I say that because I never really showed them off, because I looked like a hoe because they were so big. I think? I’m not sure.
My age is truly, truly on my side for every aspect of this journey and I have become thankful for it. I woke up and Kim needed to help me get up by putting his hand in the middle of my back and pushing. As I sat up, the sharp pain really hit me. The implant seemed to drop as I stated before. Not significantly but I think it is on top of the drain, or the drain is on top of it, OUCH.
The drains, do you know what I am talking about? They are called Jackson-Pratt drains. There’s a video on there, you don’t have to watch that, lol. I think I stated before, I have been told, when you have surgery, or really even cut yourself, the body sends fluid to that site with protein and other things to help it heal. However, there is so much fluid as this is a major surgery, that the body has nowhere to put it and it will just pool up and that is not good therefore the drains help. I have 2 drains on each side, Kim calls me an octopus. I am like, I don’t even know, a science experiment. So, there are two drains on each side, one on the bottom of the breast, the other on the top and they are legitimately stitched into my body. It’s pretty amazing. They need to be drained morning and night, recorded and when they individually total less than 30 ml in 24 hours, they are ready to come out.
I was up around 7:30 am. Noreen was helping me empty the drains, Nurse Noreen. No hesitation at all. You have to strip them to get the blood clots out and reduce blockage. So, you hold the tube as close to the stitching as possible, without touching it, because INFECTION, SO FUCKING SCARED OF INFECTION. Well, first you wash your hands for 15 seconds and dry them with paper towels. You take small alcohol swabs to help it pull easier, not for the alcohol portion of it. You then open them up, pour them out, measure and squeeze the air out, fold in half and pop the top back on to create the slow pull of fluid again. It’s pretty crazy. The color should start out red and then get lighter and lighter until a clear yellow. I can’t believe I have drains coming from my body. MSK gave me a pink bra made specifically for this, they have little holders for the drains. I had gauze over my breasts and the stitched in drains. The nurse told me we should take the gauze off and then close the bra back up and let it air out. I wasn’t going to do anything until the doctor called to confirm, as they said they would the next day.
Aunt Noreen brought a bell, yup a real bell, for me (I actually did use it twice as I couldn’t really yell). She asked me if I had a tray for eating in bed, I said no and said maybe it is best for me to not have that as it will help me get out of bed. She said she would order one and have it shipped to the house, thank goodness!! Ate about 6 of my first meals in bed.
I was served perfectly cooked scrambled eggs and an english muffin with butter in bed with some fruit after draining. Just the word, drain, ew. There is truly nothing like the perfect scrambled eggs, which are different for everyone. For me, a little wet with salt and pepper, mmmm, now Chef Noreen. I fell asleep and then woke up around 1:30 pm. Oh, lunch time, peanut butter and jelly with a side of antibiotic. I am taking an antibiotic 4 times a day the entire time I have the drains in. Infection is really scary especially when you have so many random things in your body. No more oxycodone for me. Extra strength Tylenol, however, I will be taking it regularly and I think that’s VERY ok. Also taking colace, another anti inflammatory, so many pill bottles in the house.
The PA of the plastic surgeon called. She asked if we looked at the incision sites yet and I said no. I wasn’t sure if we should put gauze back on and she said yes. Ok, great. It was time to do that. I was dreading it. Yes, I did see my boobs in the hospital however not in my bedroom yet, the bedroom I share with Kim. Thankfully he was at work, I wasn’t ready for him to see it, even though he wouldn’t care. I started to cry and I stopped. Yes I’m starting to accept it, however, my boobs are goneeeeee and I have two scars across my chestttttttttt. Shit. Okay, I kept going, everything looks good, some bruising but no redness, phew. I stood up and looked in the mirror, not bad, not bad. Changed the gauze and velcroed me backed up with the other bra, they give you two. Relief.
For dinner, Kim picked up some soup and made grilled cheese, ate half of everything, it was quite delicious. Drain and sleep.
June 9, 2017. Friday. Still an octopus and it’s pretty annoying. I can’t sleep on my side or stomach and I only sleep on my side or stomach, although Kim says sometimes I fall asleep on my back, who knew?? I bought this wedge from amazon, it really helps the first few days, you literally can’t get up on your own without pain or unless you are pure muscle and can pull yourself up with your abs, surprisingly, I can’t do that. Another day, another drain session. More eggs for breakfast in bed and then I went downstairs for a little stroll, like from the front door to the back door, then back upstairs. I was told to keep moving to get the fluid to drain. I was also told to stay still so it doesn’t drain too much. Dr. Heerdt confirmed to keep moving because, once the drains are out, if you start moving a lot and fluid builds up, no good, no good. I think I had more peanut butter and jelly for lunch, mmmmm.
Meg and Sam stopped over with some yummy food; taco zucchini boats, eggs muffins, chickpea salad, CHEEZ ITS, all delicious. Then Kathleen stopped by with some goodies including chocolate covered blueberries! Kim’s obsessed with them. Maybe took a nap after that, dinner was zucchini boats. Drain and sleep.
June 10, 2017. Saturday. Happy wedding day to my college roommate Britty! Sadly I couldn’t make it, because, ya know. Woke up and decided I would do the drains myself, it was time. It was pretty easy, and honestly gross and cool all at the same time. Pulled some clots through as they were blocking the draining process, grosssss and coooooool. Breakfast. Then it was time to get out of the house. I got dressed, wearing a button up dress that kind of hid my drains but there was clearly something under there. Sigh. I put on my brown wig and that was about it. Gosh, I haven’t worn make up in a long time. We walked outside and I bunched my drains up like I was pregnant and held it like pregnant ladies do, and I did this the entire time. LOL. It’s about a 5 minute walk, iced coffee and walked home, changed, back in bed.
Mom and Nate came over and brought Wegmans subs, ever had them? So goooood. A Wegmans is opening up near us on July 23… at 7 am… AND I CANNOT WAIT. I love Wegmans. We hung out in my room for a while, snuggle time. When they came, there was a package outside the house, Nate brought it up. It was a packaged fridge basically, huh?? Assorted gourmet chocolate covered strawberries from one of my co-workers, thanks Chrissy!! They were amazing.
Mom and Nate left and it was time to relax. Hillary was up for the weekend for Angie’s birthday (HBD Angeeee). She came over before the dinner and hung with Kim and I while we ate pizza, mmmmm pizza! Ed and Aunt Noreen went out to dinner in town, reduce the cabin fever for Auntie N. They were going to the same place Hillary was going for dinner, Hillary obviously excited to see Ed, two peas in a Phd pod. Hillary left for dinner and I think Kim and I went up to bed and watched Suicide Squad. Mehhh, mediocre movie but entertaining. Sleeps.
June 11, 2017. Sunday. Hillary was coming over as well as Ed. Ed brought over bagels and cream cheese and Hillary was bringing over meatballs for tomorrow night and an egg bake for breakfast; eggs, turkey sausage, peppers, onions, potatoes, cheese, soooo yummy. Nicole came a little while after and we just hung out, it was nice to be downstairs for a long period of time. Mel stopped over as well. Everyone left around 11:30 am, time for Kay to go to bed.
Rebeka came up around 3 pm. I asked her to get me some button up shirts. They didn’t really work as my drains are just, noticeable. Oh well. Mom also brought me a big white button up yesterday that actually kind of works. We hung out on the couch for a while then Kim came home then Melanie came over. Melanie was going to the grocery store and came back after with water bottles and THREE BEN AND JERRY’S. Amazing, thanks Melanie. Sleeps.
June 12, 2017. Monday. Aunt Noreen was leaving this morning at 8:30 am. Peg stopped by with some quiche and iced coffee from the local bakery, mmmmmm. She was picking something up. Aunt Noreen packed all of her stuff up and it was on the road she went. So thankful for everything she did. Ed got her a good bottle of wine and I sent her a spiralizer, ya know, the vegetable noodle maker. I thought she would enjoy it. Kim had off today but he was sleeeeeeeeeepy. He is a working machine and the one day he has off he sleeps and sleeps and sleeps. I hung out on the couch watching tv and blogging. Kim woke up and I was ready to get back in bed for a nap. Just a lazy day for both of us (as many of them are for me right now and will be in the near future). We had Hillary’s meatballs for dinner; Kim made a meatball sandwich and I just had them with buttered bread on the side, which is the best. Drain and bed.
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.
We went to get checked in. “O’Neill, Caitlin, 8/12/88”. I got a clip on badge and so did Ed.
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.
June 3, 2017. Friday. It was my last day of work before taking off for a month or so for surgery. Did you know I didn’t take off for one entire week during this whole thing? I mean there were weeks where I worked two days in the office then two days at home but nope, never took an entire week off. I’m sorry but I think that’s a little impressive. I won’t lie, I’m kind of looking forward to a little break. It does suck that’s it’s going to be after major surgery but, I’ll take what I can get. It has been quite a journey, as you all know, and I’m tired. I’m really, really tired and I’m ready for a break. I worked for about 10 hours, I wanted to make sure everything was in order for those covering for me. I left around 7 pm. Kim was working late and wasn’t going to be home until about 8:30 pm. I was pretty hungry and was going to order some Thai food but rummaged through the freezer and found some cauliflower rice and spanakopita. Mixed it with some brown rice and Thai chili sauce, YUM. Caught up on some bravo shows, real housewives of Potomac to be exact. Kim cane home, I heated him up some dinner then it was time for bed.
June 4, 2017. Saturday. Slept in until about 10 am, well stayed in bed until then. I woke up to make some coffee but was so hungry I decided to make some banana pancakes. I got my laundry started then got on the couch. I had quite a list of things I wanted to get done this weekend however with my surgery coming up, my anxiety sure was kicking in. I’m happy I got the laundry going. Kim came home around 5:30 pm. We went out for a little datey date. I wanted a cocktail since it would be my last for a while. We went out to a local restaurant. Kim knows the manager quite well. Before he came up to say hi we were talking about babies. Kim and I go back and forth, want kids, but want to travel, have money, have minimal responsibility. Then a baby sits down near us and Kim says, “oh he’s cute”. WE WILL FIGURE IT OUT ONE DAY. I’m just not worried about it and I think we will be on the same page with it, that’s what everyone hopes right? I wanted to go out for another drink, Kim was tired. Meh, I won’t fight you, he had work at 5 am the next day, and also, sleep is fun. Kim took a shower and I, for some reason, looked at post mastectomy pictures. I think it was necessary and healthy but also hard on the brain. I looked, they weren’t too bad. Then the pictures came up that were RIGHT after surgery. Holy crap. Scary. Scars. Blood. Omg. I started crying. The anxiety was really kicking in. THIS SUCKSSSSSSSSSSSSSSSSS. I hid the tears from Kim. Turned the lights off before he came in and just concentrated on the movie I was watching, Interstellar, I recommend it, actually did keep my mind off things. I finished the entire thing, it was 3 hours long, this never happens. Anxiety. Ok, sleep.
June 4, 2017. Sunday. Today was a tough day. I woke up with tears starting. The surgery really was looming. I really had to peel myself out of bed, sigh. I stopped to get some food before heading to moms. My stomach was hurting and I just didn’t want to eat anything but I got something because I figured I needed protein and nutrients prior to surgery. OK IT WAS WENDY’S. Twist my arm why don’t ya. Cheeseburger, fries, coke, oye. Ate a few bites on my way to moms. Got in the house and broke down in tears, “I don’t want to do surgery, honestly I don’t care about surgery, I don’t want to lose my boobs!”. Sandwhich and fries thrown in the garbage, my stomach hurt too much. Mom and I got in her bed and watched some tv. Afternoon snuggles.
I was on my way home around 3:30 pm, Kim was coming home soon too. I wasn’t sure what was for dinner and I honestly didn’t feel like thinking about it. My thoughts were all about surgery. I did however think about this cocktail we saw on Bobby Flay’s cooking show yesterday, a peach-mint gimlet. We had these peaches that were prettyyyy ripe and we needed to use. I decided to stop at the store and get some mint. Kim got home and we had enough Maker’s Mark for one cocktail. Muddled the peach, sugar and mint, added the bourbon, shake shake shake, poured over crushed ice (that we made in the food processor lol). It was quite delightful. Kim wanted to make pancakes for dinner, whatever you want honey. THEY WERE THE BEST PANCAKES I THINK I HAVE EVER EATEN. No like, I loveeeee fluffy pancakes, I don’t eat them often but, damn, they were sooooo good. Kim the chef. I was still working on that laundry, sigh, so much laundry. I went up and put it away. I’m watching Girls again on HBO. I don’t know why. Soothes me. Night.
June 5, 2017. Monday. Kim was off today, we slepttttttt in, until about 10:30 am. Kim works so much during the week and on the weekend that when Monday comes he needs to chillllllll. I actually had to be productive today since I wasn’t really over the weekend. UPS, post office, Walmart, home. I then had to make my way down to MSK for a meeting with the genetic counselor to review my BRCA2+ diagnosis (?). Basically, I’m getting both my breasts removed, the chance of cancer reoccurrence is less than 1%, it can be in the skin or somehow appear in the lymph nodes, but doesn’t happen often. So my ovaries … removal between 35-40 is recommended, “think about kids sooner rather than later”. This is what’s weird about the kid thing, all these reasons why we NEED to think about having kids but, we WANT it to be natural. Aye carumba. It’s that type of think like, well, do I want to do this because I hear about it so much or because I want it. That will most likely be a challenge but what is meant to be will be. Oh, and passing the gene on, can’t forget that. My baby will have 50% chance of getting the BRCA2 gene that I have, that’s not good. You can do things to prevent this from happening. 1. IVF – get some sperm and egg, check the egg, put the ones together that don’t have the gene and see if a baby is made, 2. Get pregnant, and check the embryo at “cell cycle 8” according to the genetic MD. Now, there are ups and down. IVF, money, money, money. However, getting pregnant, finding out the embryo has the genetic mutation and terminating it, emotional issues? However, knowing I wouldn’t be passing on the possibility of cancer on, would potentially make it okay? I don’t know, probably not but, I am not sure, we will have to see.
We went out to dinner with Kim’s parents, his brother Sam and girlfriend Meg. I guess I wanted to go out one last time before surgery (my last cocktail clearly wasn’t my last cocktail). We went to a local restaurant called The Town. Good cocktails and good food. I had a wild berry lemonade with vodka and fresh muddled berries, yumz. I had the burger for dinner, it was soooooo good. I had another cocktail, because, why not? We were home by about 9 pm. Water, water, water, packed my bag for tomorrow and it was time for the last sleep with Kim with my boobs, yup. Zzzzzzz…
You heard it, SHRUNK (OR SHRANK). Long story short, the lymph nodes are normal size now, less than 1 cm, which indicates they are (most likely) cancer free. I had one major tumor with two multifocal tumors. Welp, those multifocal tumors are no longer visible and the span of cancer (was about 3 inches) has decreased by about 50% with no skin or nip having cancer in it. This is great news. Did I think the cancer would be 100% gone, meh, maybe 5% of me? As long as it shrunk by 1% I didn’t care, that means it hasn’t spread. My breast surgeon, Dr. Heerdt, actually called me at 7:45 pm the day before we were leaving for the Cancerlorette party. I was relieved for a few reasons. While I wouldn’t have cared, I just didn’t want to get a call from anyyyyyyyoneeeeee from MSK on vacation, just no one. She was happy with the results, so was I.
On Tuesday, May 16th, Ed and I took the train in to visit with the plastic surgeon. We were running a little bit late so we started to POWER WALK. Aye carumba. We walk in and I am given an iPad to answer some questions. These questions include, “do you think your breasts will look the same after surgery?” … “do you think you will feel good naked after surgery?”. What the hell are these questions? I was just filling it out, rolling my eyes and shaking my head next to my dad. They called me in about 45 minutes later. I went in the room, removed everything from the waist up, put my gown on, sat down and waited. The nurse then came in. Her name was Brownwynne, interesting name right? She also looked a lot like me (when I had hair). She was sooo nice, as many of them are. She explained everything in detail. She showed me the expanders that will be placed under my chest muscle. I started to cry at this point. “Are you ok?” … “yes, I am fine, I’m just 28 and this is crazy” … “I get it, you want a hug?” and she got up and gave me a good hug. We then moved forward on to pictures of the doctors work. Ya know what, these boobs look goooooood. They’ll be perky ya’ll. The doctor then came in. He was nice. He drew out every surgical option, since there are a few; taking fat from your stomach or butt, taking muscle from you back or implants. He reviewed them all even though he already could tell the implants were my only option since I don’t have enough fat. He squeezed my stomach and said, “well no, there just isn’t enough here” , I said, “SAY THAT AGAIN”. He did. BAHA. I said I will have to tell my boyfriend that. He laughed. I’m a funny person sometimes. We talked for about 20 minutes and that was that. I will be getting my breast tissue removed by the breast surgeon and the plastic surgeon will come in and place the expanders and drains. Yes, there will be drains. There will be two on each side. They will be stitched into my incisions and will drain fluid that collects. I will have to empty them twice a day, morning and evening, and measure them each time. They will be in for a week or two, one side might come out sooner than the other. They will be removed when less than 30 ml accumulates in 24 hours (that’s about a shot worth). It’s gonna suck, its gonna be uncomfortable, it’s gonna, it’s just gonna suck, that’s all I can really say about it. I remember helping mom with it, it really wasn’t that gross or anything, however I wasn’t the one with the drains in so, I am now on the other side.
After the appointment, I had “before” pictures taken of my breasts, that was fun. Ed and I then left, I had pre-op tests about two hours later so we got some food on the streets. Falafels, yum. We walked through Central Park. We then walked back and I had an echo, talked to the NP, reviewed everything and we were out. Took a walk back to the train station. It was not a terribly hot day but it was warm. About 30 minutes into our walk, I had to rip my wig off. It took me about 5 minutes to finally grow the courage to take it off and put my Rutgers hat on. It was funny. Dad said no one noticed, everyone’s too self involved! I got home and an hour later met up with Rebeka and Mel for sushi. Yum. We sat outside, it was a beautiful night.
The next day, work, then movies with dad and Nate, we saw Guardians of the Galaxy 2, meh, wait until it comes out On Demand. Thursday the 18th, work, Kim was playing golf. Thursday is golf day for the Stires men. I am ok with it. Kim texted me before they started playing, “I’m gonna have to play a lot of golf before I become your personal nurse!” … “no honey, you can golf after surgery, there are plenty of people to come help me, and also, I will eventually be ok!” … “no, no, no, I will be there”. Thankful. It was nice to be home, made some chicken, potatoes and salad and relaxed and watched some Bravo. Friday the 19th, nothing special, Kim worked late, another night. On Saturday we were going to Kim’s cousins house for a BBQ with a bunch of the family. They redid their kitchen and it was time to party it up! It was great to see everyone. We left earlier than everyone, around 9:30 pm as Kim had work early and I was going into the city to meet up with some friends for a rent the runway event on Sunday. I was a little cranky as well because, yes, we were still doing the weight loss challenge and I was eating healthy, and damn, that can make you cranky sometimes (like really healthy). The next day, May 21st, I took the 9:30 am train to meet Christine and Jenn, her friend from work, for a little event at the rent the runway store in NYC. I took the train, got in a cab, made my way downtown like it was nothing. These trips into NYC for MSK have really made me feel comfortable in the city, which hey, another silver lining I guess. I thought it would make me hate the city but I am actually growing to like it a little more. We took a little test for our style, tried on a few things, talked to the RTR staff, it was fun. We then walked about five minutes to a great brunch spot. We couldn’t believe we got in right away. It was great. Jenn and I then walked back to Penn Station and waited for our trains. I was back home by 4 pm. It is pretty amazing how close we are to the city.
Monday was here, the 22nd, it was time to work… oh and then go for that mammogram and MRI that gave us that good news. It was a long day, as many of my days are, but it is ok. When I was there, I could tell someone had a mammogram where they found something suspicious. You can… oh, I can, I can tell by the way they sit, breathe and look. I guess it comes with the cancer diagnosis territory? I thought to myself, should I talk to her, should I leave her alone? I remembered when I was in the position, I wouldn’t want anyone to talk to me at that point so I didn’t. I later found out everything was ok, very relived, and 1% jealous. Sigh. At one point someone was giving me directions on where to go, my response, “I know where to go, I live here” with a smile on my face and a chuckle from the nurse. No, but I do. Tuesday, May 23rd. Work then went down to have dinner with mom and Aunt Peg before leaving for my Cancerlorette. Wednesday, May 24th, who knows what happened this day, DAY BEFORE VACAAAAA!!!
May 25th – 30th – what happens at Kay’s Cancerlorette, stays at Kay’s Cancerlorette!! I can sum it up for you; Tito’s vodka, Jameson, sun, pool, bathing suits, pizza, sushi, dancing and me giving a speech on a microphone to an entire bar filled with probably 50 people that went something like this, “hi everyone, my name is Caitlin, I am on my Cancerlorette right now, yup, I am 28 years old and I have breast cancer. I am BRCA2+ and I found my cancer myself, so don’t forget to feel your boobs! I will be having mine taken off next week so we are celebrating, I mean don’t I have great boobs!?”. From what I am told (and what I remember), the bar went silent and everyone was listening, it was kind of empowering. After that, a woman came up to me who had cancer, another woman came up to me who had cancer and was BRCA2+ and had her boobs removed with implants (and she let me feel them) and they felt good, another person came up to me wanting to buy me a drink. It was pretty crazy and it was a great night and a great vacation. My girlfriends really made it special for me, buying water bottles saying “Kay’s Baes” each with our names on them, surprising me with bottles of champagne at the pool (THANKS PAT), wearing all black when I wore a brighter color to feel special, they REALLY surprised me and did a lot (especially when we all had delayed or cancelled flights on the way home, ugh).
Ok, let’s get real.
This is it. While on the plane flying home, I felt like I was flying towards the end. I had been looking forward to this Cancerlorette for weeks, it really took my mind off my surgery and I am so happy it happened. I cried on the plane about 5 times because I really felt like, welp, I am flying home to have my breasts removed.
What am I scared of? Hmm, first thing that comes to mind, losing Kim. I know I won’t lose him (as tears swell up in my eyes). What if I do? For some reason I have been saying DUMB things to him like, “will you leave me?” … “will you cheat on me?” … “but I won’t have boobs”. I am joking and dead serious all at the same time. His responses, “no” … “I am not the cheating type” … “I’m too lazy”. I guess those are the best responses I could get. This is going to be HARD. Honestly, he’s a boob guy. My best asset(s) are my boobs (definitely ain’t my personality). What will be my new best asset? Nah not my ass, I have nice legs but eh, I do have pretty blue eyes but them eye lashes haven’t come back yet, my hair, oh yeah I am bald. This is my life. It’s scary.
I am pissed off.
I am really pissed off I am going to lose my breasts.
I am pissed off Kim has a girlfriend who is losing her breasts.
I am pissed off my friends have to deal with this.
I am pissed off my family has to feel this pain.
I am pissed off.
I am thankful.
I am really thankful they even have reconstruction.
I am thankful Kim is my boyfriend.
I am thankful I have the friends I have.
I am thankful I can communicate with you all and hopefully help someone.
I am thankful.
I am sad.
I am really sad that I have been dealt this hand.
I am really sad Kim has been dealt this hand.
I am really sad at 28 years old, I need to deal with this.
I am really sad that I am really sad.
I am sad.
I am scared.
I am scared of not calculating my drainage correctly.
I am scared of something going wrong in surgery.
I am scared of being utterly disappointed in my new breasts.
I am scared of infection.
I am scared.
I am fearful.
I am fearful that my relationship will change.
I feel happy about how deep my relationship with Kim has gotten. I NEVER (NNNNEEEEEVVVVVEEEERRRRR) thought I would have something like this. However, it’s scary being so dependent on someone. I have faith we will be ok, but if I said I didn’t have thoughts that this will change everything about my life, I would be lying. Thankfully, Kim is Kim, and he says everything will be ok, so ya know what? Everything will be ok.
My friends have started a meal train for Kim and I. He is back in the swing of work, working 10-12 hour days, 6 days a week. I won’t be able to lift over 5-10 pounds for 6 weeks (holy shit). Sign up below if you have time, if not, I STILL LOVE YOU AND AM VERY THANKFUL!