I wanted to apologize to my avid readers about my last few entries. I have gotten a slew of messages from so many people recently reminding me I’m strong and letting me know they’re there for me, which has been so beyond nice. After reading my last few entries as compared to the first few I can see it’s because I have totally shifted into my Debbie downer mode and have completely exploded into full depressing details about my mental state. Like I told you all from day 1, I’m not holding anything back and I have surely kept to that sentiment recently. I do apologize though as my mood has shifted and I have definitely held back my joking on some occasions but as I start my blogs I have all these thoughts in my head about something funny that happened and then all my emotions pour out of me and it ends up sounding like I’m literally writing in my diary. Which I did say from the start this was going to be like and I want to give you all my daily honest thoughts because this adventure has been the craziest one I have ever been on. So, to start it off, I am in a better mood! Obviously, my emotions are still a little wonky but I have made a lot of decisions lately and I am thoroughly thrilled with the outcomes thus far.
As of yesterday, I have decided to switch from Sloan to Weill Cornell completely and I will start from the beginning of this leg of the tour. As I’ve told you before, my oncologist from Sloan told me she was very “disappointed” with the results of the surgery pathology-wise, which was a huge blow to everything I had just endured and left me with a really bad taste in my mouth. I constantly was questioning whether or not I had done enough in regards to the chemo and wondered if it was worth it. The next part was the question of the lymph node removal, and as I’ve said my doctors at Weill Cornell were completely on board with my decision of not doing anymore surgery and going ahead with the radiation. Now, my doctors at Sloan also wanted to confer and decide what the best way to go was and I received a call last week from my Sloan oncologist who told me that all the surgeons agreed at Sloan that removing all the lymph nodes and then radiation was the best route. As she was explaining this to me on the phone with it on speaker so my mom could hear I was running around flipping her off. I know, very childish, but I was so over this part. I had made my decision and it didn’t really matter what she said. She constantly was telling me that “I’ve been with you from the beginning, I think I know what’s best.” DO YOU?!? Now, don’t get me wrong, I am so thankful for everything she has done for me and I am forever grateful for all support and care her team has given me but that kind of was the last straw for me but my mom wanted to hear what they had to say so we kept the appointment with Sloan’s radiologist for the next week and moved on.
Yesterday I went to see the medical oncologist and radiation oncologist from Weill Cornell and I was really not a happy camper. I was extremely grouchy and stressed. I just wanted them to confirm again that the next step was ONLY radiation, that everyone agreed 100000% that I did not need to get more surgery. We first met with Dr. Aajdhskafjgfjsh, legit cannot pronounce her name so we’ve been told to call her Dr. A which is easy and I like it already. I’m not sure why but this is the second oncologist we’ve met with who has a very thick accent so you literally need to learn how to lip read to understand her. She was so sweet and funny and thorough. She wanted to start from day 1 all the way to the moment I was sitting in front of her. We had to have been in there for well over an hour and a half and she didn’t care, gave us all the time in the world. She also made a mention of the word fat and goes “I’m NOT calling you fat.” So matter of fact-ly. Well thanks Doc but I am but so sweet of you to know the ways of the woman. She also said my mom looked SO young so my mom is all on board. She also told me from reading all my reports that my cancer was not that aggressive and I wasn’t REALLY a stage 2, I was more like a stage 1 ½. OK, why didn’t my other doctor tell me any of this? Also, although it should have been obvious but she confirmed a million times that I NO LONGER HAVE CANCER. I could see my dad crying from the corner of my eye, but I tried not to look otherwise I would fully break down so I just smiled and said “I know,” like a straight up psychopath. But I sat there wondering why no one said that to me before? Like did they and I just ignored them because I didn’t believe them? To be honest, that part really doesn’t feel real cause it’s not over yet. I don’t’ think that will fully sink in until the last stitch is in and my hair is back. Anyway, she also told me she was SO pleased with the response from chemo and I had great results. Ok Sloan lady, what report were you reading? She also confirmed what my surgeon said and agreed that no more surgery was necessary. She said A MILLION times that she usually takes the very aggressive approach but with all the data they have there’s no evidence that taking out all the lymph nodes is better than just radiation. She gave me a huge hug and I left smiling and confident that I was switching doctors. I smiled all the way to Warby Parker where I browsed around looking for new glasses, BALD. Yes, I took my hat off and was like FUCK’IT and found a really cute pair of rose tinted clear plastic rims. Real excited for those to come in. I needed something new for my future short haircut.
Anyway, next was the appointment with the radiologist oncologist Dr. Ng, now I wasn’t really sure what to expect because most of the doctors I have met with are very matter of fact. Well this guy legit skipped into the room and was VERY LOUD. And kept repeating, “If you don’t remember anything from this meeting just remember YOU ARE GOING TO BE FINE WE ARE HERE TO TAKE CARE OF YOU.” Ok pal, I’m in sign me up. He was so sweet and smart and confirmed what we kind of started figuring out Sloan is a little behind. Now, I’m not sure if that’s for all cancer or maybe just for breast cancer, but he said it, not me. Doctors usually don’t shit talk other doctors, and I haven’t really either; when they ask why I’m switching I always just say, I wanted a different outcome for the surgery and figured my whole team should be at one hospital but now I guess I can just say “Sloan’s behind.” Just kidding, I won’t say that out loud cause they do incredible work and they cure people every day. Ng did say that Weill Cornell’s statistics are much better than any other hospital for all stages of cancer so I’m literally diving into this new hospital ready to go. He once again confirmed that radiation is the way to go and that surgery is not necessary. They only have data for 5 years from a study they’ve been doing. They have a group of people who got all the lymph nodes removed and did radiation and a group who only did radiation, and now that they’re five years out there is no difference in the group. Same rate of reoccurrence, if there is any but he said if I opt for radiation I will have a 5% chance of a reoccurrence in the area they’re radiating. Ok, 5% is good enough for me. Obviously 5-10 years from now this can change, and the results could be drastically different in one group than the other, but I’m willing to take that chance. If they need to come out a few years down the line than I’ll do it then if I need to but for now I want to keep my lil lymphys.
As its looking I’ll be starting radiation the week after Thanksgiving. HAPPY BIRTHDAY TO ME. He was adamant about trying to get the radiation over with before the new year but it doesn’t look like that’ll happen. I told him I cancelled all holidays this year so it’s fine. I’ll need 25 treatments which is 5 weeks in total, so if all goes according to plan I should be done the week after New Years. Happy 2018! After the radiation I will need about 6 months to recover so it puts me exactly where I thought I would be, in June for the second surgery. I have it in my head now that this is going to happen so I’m not as disappointed as I was before. Obviously JUST radiation is better than the potential surgery that was suggested to me. There are side effects with the radiation but he didn’t even want to tell me all of them to get me nervous. The one that he did tell me was the fatigue, which I’m tired all the time anyway so who really cares. I’ll have to travel into the city every day for 5 weeks for the radiation which is fine, I’ll just become a commuter again and take the LIRR with every other miserable person. I figured I can just make daily trips of it, I could go to the museums or visit friends or even just walk to and from Penn station to get some exercise. There are worst things that could happen, trust me.
Now comes the part where I have to break up with my Sloan doctor. I keep putting it off because I’m nervous, I really have no idea what to say. “It’s not you, it’s me?” I know this happens all the time and I doubt she’ll take it personally but it’s an interesting step. It’s definitely different than breaking up with your other doctors, sometimes you just never make another appointment and you both forget about each other. This lady kind of saved my life so it’s a little different. I know she’s not in the office today so part of me just wants to leave a message so we don’t have to speak but I feel like I should at least give her the curtesy of a conversation. Maybe she’s reading this and I’ll save myself a conversation, if so, thanks you’ve been great but it’s time I’ve moved on. My mom keeps saying “don’t let her trick you!” Because I am the type of person to be like OMG YOU’RE RIGHT I HAVE MADE A MISTAKE and then I’ll end up back sitting in Sloan for something. My mother also thinks Sloan is extremely depressing, which I know I’ve said before but I don’t really see it that way. Like yes, obviously it’s not a fun place to be because EVERYONE going in there has cancer. But you can also tell the difference between the people in the remission and the people who are going through treatment which is nice because at least people are getting cured. Whereas Weil Cornell is a HUGE hospital and they are doing literally everything in there, delivering babies, rehabilitation, surgeries, cancer; it’s overwhelming in a different way but not everyone is sad.
Some more good news, I have been able to look in the mirror and I LOOK GREAT. What the hell. Literally it just looks like someone kind of deflated my boobs. My scar is pretty much nonexistent and my nipples are there. It’s INSANE. I even went to Physical Therapy today at a place that is only for breast cancer patients and even they were like HOLY CRAP! Not only were they shocked with how I look, they were shocked that I have so much movement only 3 weeks out from surgery. My new radiologist said that that has to do with the technique she used during surgery, so thanks Simmons, I’m very thankful for all you’ve done and that I can put a shirt over my head without any help.
Apparently even though I have almost my full range of motion back, I’m not supposed to jump back into any heavy exercise for 6-8 weeks, which is right around the middle of radiation which is also when I’m not supposed to do exercise. It’s SO annoying cause every time I’m ready to start working out again or do something new someone is like NOPE YOU GOTTA WAIT! I’m feeling a little better, I tried my pants on and they still fit so we can all take a collective sign of relief. I’ve been eating the meal plan and going to the gym so I truly do feel better, I feel my double chin melting away but I’m obviously not back to where I was before this started and that’s frustrating. I’m ready to get back into a daily routine that consists of normal people stuff like work and the gym. I’ve decided to go back to school for 4 classes next semester and I’ll start working again part time to ease myself back into it. It’s been a struggle but I’m closer every day.
Something that has been very hard to handle lately is that I have officially lost all my eyebrows and eyelashes. I’m not sure why no one prepped me for this but I was very unprepared. I know I said my eyelashes were falling out after chemo but they are ALL gone now and it’s really really hard. It’s a really strange feeling because even though I’m cancer free and chemo is over with, I actually finally LOOK sick and that’s been really tough. I’ve been trying to wear fake eyelashes but for some reason they never seem to work now that all my eyelashes are gone. I have an appointment on Saturday AM with the makeup lady at Racines and they’re going to help me with eyelashes and eyebrows so that I can feel more comfortable as they grow back. Hopefully it’ll help and I’ll be able to look in the mirror more often.
Another thing that has been kind of hard to deal with lately is sleeping on my back. I am a stomach sleeper all day every day. I even had a set up for my bed that I’ve been doing since I was like 13. Six pillows, three on each side. Three horizontal and three vertical. I would sleep right in the middle of them and make a little air hole with the covers up over my head. Sounds crazy but it was literally how I would fall asleep every night. Now I have to sleep straight on my back with my arms at my side. There are so many nights where I just lay there with my eyes wide open hoping sleep will somehow find me. At least for those of you who sleep on your back, I’m sure you move to your side sometimes. I can’t even do that. I’m pretty much sleeping like I’m in a coffin, it’s AWFUL. My physical therapist said that this could also be why my hips have been so painful lately, sleeping on your stomach stretches out your hips and sleeping on your back keeps everything tight. Like they couldn’t have made getting a mastectomy anymore painful. Jesus let me sleep on my back! I will probably sleep for a straight 24 hours the day that finally comes.
Also for those of you who are curious, and I know most of you are, I got a 90% on both of my garbage papers. I’m not THRILLED with the result but I guess it’s an accomplishment that I even finished them during this whole ordeal. I’ll take it as a positive.
Until next time
Xoxo
Kim