I don’t even know where to begin.
Going back a few years. My mom had stage 3b breast cancer. She was BRCA2 positive and I tested BRCA2 negative therefore I was treated like “every other woman” (whoopsies). About a year ago I found a lump in my right breast, got an ultra sound, then a cyst aspiration and they said it was nothing and it is “normal” to have water filled cysts. OK, great!
Fast forward to summer of 2016.
When I found the lump under my armpit, I thought it was nothing so I let it go for a few months (whoopsies again). I am very diligent about doing self breast exams due to my family history (thank goodness). It was when I was talking to the ADON (assistant director of nursing) at one of my buildings that I said, I need to make an appointment (I think this was around August). She said her sister ignored a lump in her breast and then her hip hurt and now she has stage 4 breast cancer. DING, DING, DING — go to the gyno Caitlin.
September 15th, 2016. Went to the gyno. She confirmed the lump and said go to the breast center. In order to take off from work and accomplish multiple things like voting, I decided to push off the ultrasound until November 8th (I have this all written down in a notebook, that’s what “they” recommend).
November 8th, 2016. I went to Steeplechase at RWJ and got an ultrasound of my armpit. Then the doctor wanted a mammogram. Then she wanted another one. Ok. The doctor stated she sees an enlarged lymph node and due to the fact that this is my second year going in for a lump of some sort, I am at increased risk, and because of my family history even though I was BRCA2 negative (there is BRCA1 and 2), I am at increased risk, AND because I have such dense breast tissue, and they aren’t sure what really is going on in there, I am at increased risk. She recommended I go see the breast surgeon for a biopsy. This is not how I expected this day to go. At first I thought, ok, its going to be ok. Then the nurse asked if there was anyone else with me, I said no, because I didn’t need anyone for this, for them to say it was nothing. Tears started to fall and the nurse started to say “women’s lymph nodes become enlarged for so many reasons, like when they go to the nail salon and get an infection” — welp, won’t be going there for a long time. I was on the phone immediately trying to get an appointment because the fear was starting to set in. — side note – make sure to check with your insurance to see if you need referrals for specialists, your PCP or Primary Gyno can do it dependent on your insurance.
November 14th, 2016. Met with the breast surgeon. She felt the lump in my armpit and then she felt another lump at the very bottom edge of my right breast, right near my armpit. BUT WHERE DID THAT COME FROM. Ugh. She wanted to plan surgery to take out the lymph node in my armpit and needle biopsy the mass in my breast, which turned out to be another lymph node. At this point, I knew it, I knew it was cancer. I have “feelings” a lot, and honestly, they are often right. The anxiety, lack of sleep, nausea and tears started to set in. The surgery was set for November 21st.
November 21st, 2016. Woke up around 6:15 am for a 6:45 am leave time to be at the surgery center at 7 am for a 7:30 am surgery, first of the day. Went in around 7:15 am to prep, IV fluids, etc. 7:30 am came and went…. 7:45 am… 8 am… 8:15 am….. 8:30 am. They were trying to get in touch with the surgeon, nothing. I was calling the office myself, nothing. She came in around 8:35 am. She forgot. I will give her the benefit of the doubt that she only does these surgeries on Thursday and she squeezed me in this week because it was Thanksgiving week. One of the nurses walks over and says okay, it’s time. Takes my IV and walks me into the surgical room. Welp, I’ve had two surgeries in my past (benign knee tumor and tonsillectomy) and I’ve never walked into a room like that. I was told to place my arms apart like a T and then the tears started rolling at an unstoppable pace (until the anesthesiologist came into place of course). He started asking me what I did for a living. With a mask on my face I said “I’m a dietitian”. They all chimed in, “oh you need to help us”. My immediate response, “that’s what everyone says”, I think with some tude. The nurse was holding my hand saying I had the A team. The anesthesiologist said, “I’m going to give you something now to help”. My grip on the nurses hand began to weaken until the burning sensation came through my arm into my face, I took her hand and squeezed it hard and then….. it was dark. I woke up asking how it went. My nurses name was Joan and I told her I had an Aunt Joan, she seemed semi-interested. She gave me a percocet because there was more pain than I thought. Mom then came in and was feeding me pretzels. The nurse asked how the pain was and I said “honestly, I have a high pain tolerance, I get migraines and this isn’t doing anything, I need another”. Off she went to get an ok from the doctor. I got another percocet and was asked to leave (well excuuuuuuuuuse me). I guess that’s good right? Went back home to Morristown with Kim waiting with the most beautiful fall flowers you’ve ever seen, coke and cheez-its (everything I’ve ever wanted). I was slowly brought up to bed and took a little nap. Woke up hungry, shoving cheez-its down my throat. I had not been eating much the days before out of nerves, literally shoving them in my mouth. I then took another nap and was awoken by Kim, “Hillary is here, it’s time to wake up”. I’m up, I’m up. We were talking about everything, reviewing everything, finding reasons how it just can’t be cancer. Deep down we both knew it was (Hillary earned her PhD in breast cancer research, yeah, we know, crazy). Then Rebeka came over with the food and yummyyyyyyy.
November 23, 2016. Dad’s 60th birthday. Woke up thinking, I need to get out of the house. Asked Hillary what she was doing, she said going to DSW. Okay, I will meet you there around 10:30 am. Took a shower, headed out and was driving down 287 S when I got the call from the doctors office. “The doctor would like to see you at 11:30 am”… “so it’s bad”….”oh I am not sure, she just wants to see you at 11:30 am”. It’s bad. The calls started; mom, dad, Kim, Hillary,Rebeka. Hillary met me at my moms house. I remember getting out of the car, barely being able to walk. Opened the door and immediately fell onto the floor sobbing. Mom and Hillary surrounded me sobbing as well. I said let’s go, let’s just go. Rebeka met us outside the doctors office. We didn’t get called in until around 12-12:15 pm. The doctor came in and said, actually I don’t even remember exactly what she said. Something along the lines of the biopsy was done and they found cancer cells. I said what stage, she said 2 or 3. Then I fell to the floor and so did she. It was the day before Thanksgiving, I am 28, and I just found out I have suspected stage 2 or 3 breast cancer. We sat in there for about 20 minutes going back and forth with sobs, anger, fear, sobs, laughter, disbelief, fear, wtf. Eventually we got up and decided what the next step was. Ed knows people at Memorial Sloan Kettering (MSK) and the doctor recommended we go there as well. We wanted to get the ball rolling so we scheduled an MRI, bone and CT scan at RWJ.
November 28th, 2016. I spoke with Dr. Larry Norton after someone who works at Sloan Kettering got us in touch (forever thankful). My pathology report had been sent to his office and he wanted to review it. He said to go ahead with the MRI however he does not want to do a CT or bone scan, “they” don’t do that much anymore and we prefer a PET scan. “Let me review your information and we will go from there” he said in a fast pace.
November 29, 2016. Another test. The MRI was at RWJ. I went with mom. Got an IV of something then was placed in a spaceship, face down, boobs dangling (literally). I am so happy I was face down because then I was pushed back into a small container, door closed with louddddd noises. In order to make it through, I pretended I was in a spaceship flying to another planet with aliens trying to get in (the loud noise, but they obviously couldn’t). Finally, it was over.
December 1st, 2016. I met with THE Dr. Larry Norton on 66th street at the MSK Breast Care Center (the lobby is dedicated to him, yeah, he’s big). The NP Karen took a thorough review of what I had written above, she did a physical exam before Dr. Norton came in and he did his. Felt all around, “good, not swollen, glands good, stomach good, everything looks good other than the area we already know isn’t, this is good. Let’s go talk to your father”. Basically he stated we have the information we have, we need MSK pathology to look at the lymph node cells, need to plan a PET scan to see where the cancer is and then we can go from there. “I am going to cure you, it’s going to be fine, really, don’t worry about it” – end quote, Dr. Larry Norton. Ed took a deep breath and tears started falling down his face, his little girl is being treated by the best and he said it’s really going to be ok. Walked out of the office into a group of cubicles of people who are there just to help you plan your next appointment, pretty amazing. There is an MSK in Basking Ridge (BR), 20 minutes away from where I live. We were trying to get an appointment there but it was more important to get an appointment ASAP. She said it may take two-three days just to get an appointment at BR. I said no, wherever you have one first. She picked up the phone, called BR, and they had one on Monday at 9:30 am, thank goodness.
I felt better this weekend. We were moving forward and I felt like I was getting the best treatment out there, “best in the world” I am told by some.
December 5th, 2016. My first visit to the MSK at BR for my PET scan. Woke up feeling scared, the unknown of where the cancer was or has spread was eating me up. I met my mother there, filled out a few forms, shed a few tears, got a good hug and they took me in. I had to drink this red drink mixed with sugar free red raspberry (sugar free — cancer causing, the irony, I know, however this test is based on glucose uptake by the cancer cells so you cannot consume food for 6 hours prior or anything with glucose) and iohexol. I sat in a room by myself, a nurse took my sugar (93 mg/dL, thank you) and then said someone will come back soon. I sat there, letting out a few tears and fast pace breathing when a little old woman comes slowly walking past my door. “Are you ok honey?”… “Yeah, just scared”…”Yeah it is scary, what kind of cancer do you have?”…”breast cancer”….”Yeah I had breast cancer, I have been getting chemo since 2013. You’re young, you will get through this”. I started to watch Gilmore Girls on my phone, headphones in, goodbye everyone. About 20 minutes later, the man who brought me in first came in with a small steel canister and pushed it into my IV. “What is that?” I asked. “It is the radioactive isotopes, it actually gives you less radiation than a CT scan”, cool. After about an hour of sitting there enjoying GG, a woman came in and said it was time for my test. She brought me into a large room with a big machine that looked like a spaceship. Different than the MRI, more open, not so confining. I laid down and was moved back and forth for about 20 minutes, then it was done. I got up, met mom outside, got my bagel and headed up to work. No time for rest y’all.
Now, more waiting. They stated it could take 2-3 business days for you doctor to get the results, so 2-3 years in this world. Went to work, had to train a new RD so I was busy, it was good. Pretty sure I looked like crap but, hey, I have cancer, but not everyone knows that and they just think you look like crap, sigh. Met with my boss who has been so understanding and helpful (to all the women out there who have had this too, we are lucky). When my boss was leaving, I noticed I had a missed call and voicemail from New York, NY. **Holy shit, heart drop, blood stopped flowing**. In a nutshell, my NP Karen called and said they are happy with the results, the cancer is only in the breast and axillary armpit where we knew and there is no sign of spreading. YASSSSSSSSSSSSSSSSS. “However, they did find a 9 cm tumor in your pelvic area, they say it is consistent with a benign mass but we will look into it”, there’s always something. I hugged my boss then made my usual phone calls and text messages, all 34 of them – “THE CANCER HAS NOT SPREAD, THIS IS GOOD NEWS!!”.
This was good. I felt positive. It’s just in the one area, we can really, truly beat this. Now, what’s the next step. That’s the problem with this process, you’re happy for a second but then there is always the questions of what is the next step. The happiness is fleeting because it doesn’t mean anything until something is actually being done.
December 13th, 2016. Going to MSK NY for multiple appointments. 1. 11:15 am – Surgical consult with Dr. Heerdt for after chemo 2. 11:45 am (turned to 1 pm) – follow up meeting with Dr. Norton 3. 1 pm (turned to 4 pm) – sonogram of pelvic mass 4. 2:30 pm – echocardiogram (normal for all patients about to undergo chemo). Longgggg day, then rushed home, showered, put my heels on and headed to Kim’s holiday party.
Findings – my right breast has 3 tumors, one is 2.1 cm and the others are small making it a multifocal cancer. The PET scan showed about 9 cm (3 inches) worth of cancer throughout my right breast in the back from top to bottom and multiple axillary lymph nodes. The doctor says it is stage 2. He was ready to start chemo that day if I wanted, I said I was not mentally prepared (I MEAN REALLY). He said no problem, let’s start next Tuesday. I asked if we can do a Friday at some point so I can have the weekend to recover. The NP stated that many people feel ok the next day it’s really a few days later that you feel fatigue so this works out for the best. The nurse came in and reviewed medications, side effects, phone numbers, etc. We will get into this another time.
Jump to today.
December 20, 2016. “There will be two dates we will never forget”, Kim said, “November 23rd and December 20th”, this is the truth. Today is my first day of chemotherapy. I am 28 years old. I graduated college. I got through my internship. I got a job two weeks before graduating and I fell in love my with my job. I moved to Morristown with Rebeka on December 1, 2013 and 28 days later my love affair with the love of my life began. I worked on my masters then took my dream job on June 6, 2016. Kim moved in on September 1, 2016. I never knew I could be this happy, literally never. It’s not dependent on my S.O., everything just seemed to click. Life was so good. The only way it could get more perfect was defending my masters and it was just around the corner.
But then, I was diagnosed with cancer. I can only think to myself, this is my path.
Let’s go over some silver linings though, this is the fun part.
- I am going to lose my hair and Kim has already said he will shave his too (a few will understand this).
- I can get handicap parking for the duration of my treatment, like HELLO, AWESOME.
- People buy me things, just all the time, hats, blankets, robes, gloves, books etc. I’ve had to tell people to stop buying me things (Hillary & Kim!). Listen, if I am going to have cancer, I am going to enjoy this stuff (but you can keep buying stuff, I do have cancer after all baha).
- I am getting this out of the way. I am 28, hopefully I won’t have to worry about this at 58 now, suckers!
- I know A LOTTTTTTTTT about insurance, like a lot.
- I donated my hair to locks of love (and received my certificate of appreciation today, ironic).
- I am really learning about the people who love me, and the fact that it is way more than I thought.
- From here on out, I will do anything I want without societal pressure. What? You said I “should” be doing this? NAH, I’M GOOD.
- Maybe lose some weight? I mean come on, I know you thought about it.
- My relationships with friends, family and my lover are growing so deep I didn’t even know it was possible.
Don’t feel bad for me, don’t feel pity, try not to cry but sometimes it is just natural. Learn something about yourself. If you question your relationship, BUH-BYE. If you hate your job, seeeee ya. If you are ignoring things in your life, please stop. Let my cancer be the shining light for you.
I want you to learn from this just like me.