A day worth blogging about…

A day worth blogging about…

I stole that title from my dad as he titled his e-mail to me that exact way, awkward.

Yesterday I had my final surgery. Yesterday was my last day of hell in this saga of burning fire. I had my final surgery to exchange my expanders out of my chest. The expanders were placed after the breast surgeon took out all the breast tissue in order to stretch the skin out for implants. The expanders were pumped with saline each week until goal size was reached. I also had two large, which were now considered one, cysts in my uterus that were attached to my right ovary, more like engulfing my right. We found these cysts when I did my PET scan to see if the cancer had spread. I never knew about them and they were pretty shocked about that. The gynecology oncologist could actually feel them inside of me upon physical exam. Did I mention he’s not bad to look at? However the first time I saw him I was having a terrible week crying everyday & oh bald, and the second time I forgot to shave my legs and look like a boy. Ugh. Oh, hi Kim.

Anyway, my surgery was on March 7, 2018. Of course there was a snow storm, OF COURSE there was. No better way to cool off hell than with a blizzard. I was not nervous at all for this surgery until 2 days prior. This surgery, while it was fairly invasive, was not bad compared to my first surgery. I hate to say it like this, but in my first surgery, the surgeon literally scraped the breast tissue out of my skin and muscle, removed 22 lymph nodes and cut my muscle up, that’s intense. I had two foreign objects place in my body and then had them pumped up. Oh, let’s not forget about the drains on each side.

I only started to become nervous on Sunday. Not terribly but, nervous. I was more nervous for this snow storm. What are the mother f*ckin’ chances. They don’t call you until 1 pm on the day before surgery, yes, weird. So I was VERY PATIENTLY waiting for the call. They called, 12 pm arrival, nothing regarding weather. I was e-mailing Ed back and forth, “should we go???? Should we borrow a truck??? Omg I’m nervous”. Response…. “stop checking the weather and get back to work!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”. Absolutely zero exaggeration on exclamation points, actually there may have been double. This was after many e-mails back and forth including one “you are in charge Kate”, always Ed, always.

Surgery was on. Kim and I got the hibiclens I needed to shower with the night before and morning of surgery. It is anti bacterial and decreases risk of infection.

I took 0.5 mg of an Ativan, I’m off them now, remember when I took it every night?? Good ole’ days… I’m legitimately joking. I was nervous and I needed to sleep. Dad was coming at 9:30 am, didn’t want to take any chances. Woke up, showered, dressed. Kim was still sleeping so woke him up with some hugs then continued to hug until dad came. There were tears but not many. The roads were clear. Only wet and no one on the road, oh yeah maybe because the state of emergency. We got in in record time, left at 9:25 am, arrives at 10:21 am. Wow. Parked, walked up. What a beautiful place the Josie Robertson Center. However I hope you never have to go there.

We sat down and were called in 20 minutes later. Ed brought his slippers, LOL. I bring my robe on every vacation and would bring it pretty much everywhere if it was not looked down upon. Anyway, we were brought up to the room. I was having deja vu, just weird. Walked past the hallway where my previous room was, not great feelings radiating towards me, but shot them down. In the room, changed into medical garb. It was 11 am, surgery was not until 1:27 pm (and the last number I saw on the clock before being drugged was 1:27 pm). Pregnancy test, still not pregnant, although seeing all the babies in our family makes my ovaries hurt, but maybe that was just the cysts??? I was poked twice, they couldn’t find a vein. Anesthesiologist came in, great guy. Gynecology oncologist came in, another great guy, plastics PA came in, not the actual surgeon because frankly, poor social skills, however his work is LIT (translation: best mastectomy boobs I’ve ever seen).

Around 1:15 pm it was time to go up. This is the second time I’ve walked up to my own surgery. I hate it. The first time was when I was getting the lymph node taken out to to be tested for cancer. I was hysterical. This time, not so bad however seeing all the people, instruments, everything… no good for Kay. I laid down and had a warm blanket put on, love that. The anesthesiologist was searching for a vein, they had to use a baby IV, the smallest one they make, because my veins were dead from being dehydrated. At this point I was looking around and started to cry. I’m 29, I’ve been through so much, why am I here? Thoughts I honestly don’t have too often but today, I did. The answer: it’s my path. I was borderline heavy cry but I didn’t let myself get there. The nurse started asking me questions, as they usually do. She eventually gave me a dose of something, then another, then I was out, waking up in recovery.

I don’t remember what happened when I woke up. I’m having flashbacks as if I was drunk and am remembering things. I think I asked, “where’s my dad?” and “did they find cancer?”. Right here and no were the answers.

Unfortunately, I did lose my right ovary. He said it would be a possibility because he maybe not be able to determine what is cyst vs. ovary. I’m a little sad about it but he said all you need is one ovary to make a baby. The cyst and ovary will still be sent out to pathology. I called my mom, have no idea what was said, lol. Probably “mommy I’m done! No cancer! I’m hungry”, I need to ask her. Then I texted Kim. LOL WAIT THIS IS FUNNY.

  • “Our baby”
  • “Love you”
  • “No cancer”
  • “One ovary our”
  • “Hooedully can have baby”

Drunk texts by Kay.

Honestly the rest is blurry. I think I was examined. I had to pee. Nurse helped me then I got dressed on my own. FaceTimed Hillary for 2.5 seconds and barely remember it. Nurse walked me downstairs and we were out of there.

We left at 8:30 pm. Ugh, you won’t even believe the rest. I was feeling pretty good. Again, nothing like last surgery. The most pain part was my pelvis and actually my port removal. I’m assuming the port because it has been in my for so long it must have attached somehow. Riding along, no major issues, then BOOM. Stand still on route 80. We used Waze and it brought us to a major highway that was BLOCKED OFF BY TO TRUCKS THAT HAD FALLEN OVER. We were on route 80 W from 9 pm to 12:15 am. No joke. I had to pee so badly from all the IV fluids I got, eventually I had to open the front and back door of the car and just pee. My bladder was pushing into my uterus and it was too painful. The traffic started to move and I was not done. Anesthesia actually makes it pretty difficult for you to pee so you have to push it out, kinda hard after that type of surgery. So I wrapped it up, moved the car up, and did it again, LOL.

At around 12:15 am, dad and a few others got out of their cars to see what’s up. I took pain meds again around 11:30 pm, my last dose of the heavy stuff. We were right in front of one of those police turn arounds in the median and said f*ck it. Turned around, got off at route 46, roads weren’t great but doable. Got back on route 80 wayyyy down the line and made it home at 1:30 am. HOLY CRAP. Thankful it wasn’t my first surgery. Thankful I like my dad. Thankful I had somewhere warm to go home to.

I wake up this morning with a drain on each side. Which was placed because the plastic surgeon removed some scar tissue plus it is still a pretty big surgery so fluid will rush to the site. When I heard I would have drains again, I was upset. Now, meh. I can do this.

I wake up this morning hungry, a little nauseous, thankful for my friends, family and Kim.

Also thankful for modern medicine.

To date, I have 10 scars, 7 tattoos, two foreign objects in my body and a new perspective on life.

I instagram storied my entire day, here are some highlights.

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This too shall pass. This too shall pass. This too shall pass.

This too shall pass. This too shall pass. This too shall pass.

Monday, January 16, 2017. Monday. Same old, same old. Got up, did I shower? Nope. Showered yesterday, whoops. Make up, wig, dressed, out the door by 8:15 am? Got to work by 9:15 am. I had a pretty good day work wise however the anxiety was really setting in for mediport surgery tomorrow. The woman on the phone, I think I said this already, said I will be in a twilight, won’t be knocked out but won’t feel anything. But what does that mean exactly? I will be awake while they are putting something in my body? Ok, BRB gotta go cry a little in the bathroom then get myself together. Left work around 3:45 pm. Got home and the tears start a flown’. Kim and I laid in bed and I just let loose. “I can’t believe this is my life, I can’t believe this is my life, this is a joke”….”I am fucking bald, at first yeah it was cool but now, I don’t want to be bald anymore”. Kim, “at least yours is going to grow back! I am stuck like this for another 50 years!”, LOL TRUE. He always knows the right thing to say, or to just let me cry and listen.

I was feeling anxious on Sunday too. We were waiting in a line to get out of the parking garage and he was complaining and before we left I had to drag him out of the house. THEN when I was driving there was someone who was being annoying and Kim wanted me to honk so he kept reaching over and finally I just broke, “STOP IT, YOU’RE COMPLAINING SO MUCH AND YOU’RE ANNOYING ME”. The guilt immediately ran through my body. Kim gets quiet when there’s confrontation, it’s one of our downfalls as a couple, we ain’t all cute and perfect and he ain’t perfect himself even though around now he pretty much is, except for Sunday, he was really annoying the shit out of me. I apologized 10 minutes later, “I am sorry for yelling at you, I am anxious”. I am anxious for so many reasons. I AM WEARING A WIG. That’s anxiety provoking I’d say. Can’t explain it. Just, like, who reallllllllly wants to wear a wig other than Kim Zolciak Biermann, LOL. Just everything.

Anyway, dad and I were catching the train from Morristown into NYC that night, back to Monday night y’all. My dad has a friend (Hi Susan!) who has an apartment on the upper east side fairly close to where we had to be in the morning, convenience is key to life, when possible. It was beautiful. We arrived at the apartment around 8 pm. Olivia, Susan’s daughter, and her bf were making dinner; avocado pesto on spaghetti, pan seared brussels sprouts and baked shrimp. IT WAS KIND OF AMAZING. Not kind of, it was amazing. The avocado really allows the pesto and garlic flavors to adhere to the pasta. Mmmmm, going to recreate for sure. It was about 10 pm at this point and I was ready for beddy. Snuggled up with my chemo blanket, put on some, I don’t even know what I was watching, and went to sleep.

Tuesday, January 17, 2016. Tuesday, port day. Tears just typing this, get the tissues y’all. Woke up around 7 am. Did not have to get up until 8 am. Perks of staying in the city. Got out of bed around 8 am, brushed my teeth, washed my face. We left around 8:30 am. It was a 15 minute walk. I was not allowed to eat or drink before surgery. Dad got an egg and cheese on a roll at a food truck, love those things. He got me a glazed donut for after surgery, mmmm. Walked to the facility, walking in, tears are forming. I don’t want to do this, I don’t want to be sick, I don’t want my dad to have to go through this. I wasn’t allowed to take any ativan before, that didn’t help nobody. We finally got to the office and they asked my name, “Caitlin O’Neill”, date of birth, “8/12/88”, tears. Dad starts rubbing my back, “it’s ok, let it out”.

Side note: just had to stop for about a half hour to collect myself and cry to Kim. Yesterday was just, hard.

They put us in a private room, tears help I guess, lol. We were told to be there around 9 am, got there early. Did not get called in to prep until 9:20 ish. Dad stayed, they said he could come but he didn’t need to see me cry anymore. Walked into a hallway with a bunch of little rooms, everyone prepping for same day surgery. I got into the room with the aide. She asked me to change into a gown, keep underwear on. WHOOPS, wasn’t wearing anyway, hehe. They gave me some that were actually quite comfortable, spandex, boy short type, I quite enjoyed them (lol). The nurse came in to ask me questions; fever in the last 7 days, yes, cough, yes. I never answered yes to any questions like this, life will never be the same. I will always be circling breast cancer on history at the doctors office, weird. I cried on and off during her interview. She eventually put an IV in. I had to take ANOTHER pregnancy test, probably my 5th in the last month. Alllllll negative, hope I get a positive one in my future. They weren’t ready for me for another half hour so I turned on some cooking channel, the country singer was on, making chicken pot pie without the chicken. She got the recipe from her mother who was diagnosed with cancer, rolls eyes, and wanted to eat healthier and lots of vegetables. I get it, but like, you need protein.

Around 10:15 am it was time to go to surgery. A man came and transferred me while I laid in the bed. The trip felt like forever, went throughout may hallways. I went through the hallway I walked in, passed the elevators, through a set of double doors, through another set, jeez maybe through another set. I was rolled into the operating room head first. Looked up and there was a flat screen tv. “Caitlin O’Neill, mediport, 28 years old”. Fuck. I am fucking 28. Tears. “Hi Caitlin, I am Van, I will be your nurse today, making sure you’re safe, are you ok, what is wrong, it is going to be ok this is a simple procedure”….”I just, I don’t want to be here. I am ok, I understand the process, I just don’t want to be here and this sucks”…..”you’re right, it does”. Ah, thanks Van, just straight up, yup, this sucks, I liked it. I hate when people think I am stupid and don’t understand what’s going on. I realize it’s a simple procedure. When I had to get my PET scan I also cried. The guy said,
“it’s very simple”, LIKE I KNOW BRO, I WAS JUST DIAGNOSED WITH CANCER. UGH. Anyway, then the cardiologist introduced himself, then the two nurses aides. Then the doctor. My team was so nice, everyone as MSK is, it’s incredible. Tears lightly flowing on and off straight down the side of my face towards my ears. Finally I was brought over to the operating table. This large round thing moved up towards over my head, it was like a scanner type thing. It was time. Tears, heavy, heavy tears and bellows began. Van and the aid surrounded me, “Caitlin, it’s going to be ok, what’s wrong??”….”I AM 28 YEARS OLD, I SHOULDN’T BE HERE, I DON’T UNDERSTAND,  I SHOULDN’T BE HERE”. They comforted be as well as they could. Van said he was going to give me drugs soon to make it better. Three minutes later, drugs, tears stopped. Ah, love that.

It was all a bit of a blur from here on out. They covered the right side of my neck and I was turned to the left. I didn’t see anything. I remember being shot with numbing meds, a lot of pushing into the site and then, “alright, all done Caitlin”. Okay, cool. Mini tears still fell down the side of my face but, it was over. I went to the waiting room to be hooked up to heart monitors and get some IV fluids because this girl was DE-HY-DRAT-ED. Dad came in. The nurse said, “ok, here is some information regarding the port, this is your dad?”….”no, it’s my boyfriend”, I LOLed, so did dad. I make myself laugh too much, Kim agrees. I had a 12 pm appointment to get blood work, it was 12:15 pm by the time we got out of there. Made it to blood work by 12:30 pm, just in time to miss my appointment with Dr. Norton. Didn’t get in to see Dr. Norton until 1:15 pm. He and Karen both said the lump in my left armpit is nothing, just a little pimple, it is very superficial, as I suspected, not a lymph node. Phew. I asked them both how, how do we know this working? Karen said they can usually tell by feeling the lump shrink, but since my breast is so filled with water cysts, we can’t really tell that way. There is one lymph node, but it was so small to begin with they just aren’t sure. They both said we could do a scan about half way. I don’t think I would do that unless there would be a different plan if it wasn’t shrinking it or it spread. If they would say, let’s keep going, see what happens, then what’s the point? I don’t know. He says it will work. I need to just keep saying that to myself. I have feelings, like I think I said before, I feel like it will work. Then surgery, then radiation. Then reconstruction. Then marry Kim. I see it all in my head. When I see it in my head, it happens.

Got out of the appointment around 2 pm. They don’t start mixing your chemo until you leave the doctor. I signed into work for about an hour and a half. Feeling good. Got called in around 4 pm and BOOM, the pain meds must have worn off from the surgery, pain, pain, pain, tears, tears, tears. The nurse asked if they gave me anything more or a prescription. Nope. “First things first, we need to get you some pain meds”. Thank you ma’am. Oxycodone, mmmm, it helped. I was feeling sleepy, dad said “I am going to have to carry you through the train station”, yup maybe. Took my grey chemo blanket, turned to the left and repeated in my head, “this too shall pass, this too shall pass, this too shall pass”.  Thennnn the steroid went in and I was up. “cheez-it’s please dad”. Then ya know, same old, same old. I was readyyyyyyyyy to go. “ok, time for your lupron shot”, CAN A GIRL GET A BREAK HOLY SHIT. Shot done. I head to the bathroom and over hear the nurse say to dad, “she’s a trooper”….. he replied, “she really, really is”. As are you daddy.

Took the train home, felt good, started this blog, got some great texts from friends and family. Got home around 8:30 pm. DAMN. Kim had noodles and butter waiting for me. Today I had a white bagel with butter, half a glazed donut, cheez-it’s, bite of yogurt I just was not feeling at all, other half of glazed donut, noodles, then ice cream. WHOOOOOOPS. Exhausting, exhausting day. Exhausting. Exhausting. Exhausting. Mentally, wow. Worst so far. We can only go up from here. Oh, and we are going to Basking Ridge from now on, this is good. Will make it less of a trip, more just an appointment. I got a lecture from dad and Hillary regarding only taking oxycodone, she gave me five more, when I was in bad pain. Well ya know what, I was in bad pain tonight, mentally and physically. I also took ativan. I took control and chose to take these because I fucking wanted to. My response to Hillary was, “have you ever woken up, gone to get a port placed while still awake, walked to get blood taken, had an appointment with the doctor, gotten poked, sat around for two hours, gotten chemo, then ANOTHER shot then train home?”. She said I knowwwwwww, and it was over. I know not to fuck with these drugs. Should I have taken both, probably not, but ya know what? Tonight I wanted to sleep with no pain and that’s what I fucking did. (P.S., I didn’t take anymore, switched to tylenol and the pills are already in Kim’s “we don’t take these UNLESS WE HAVE TO draw” which never opens). I don’t mine minimal pain. I actually welcome it. I want to feel what is going on in my body. I don’t want to be numb to it, ok except for the other night. It is important to be in tune with your body, hello, how else would I have found my OWN CANCER.

January 18, 2016. Wednesday. Woke up at 2 am, hot flash. Shirt off, tank on. Back to sleep quick. Woke up around 8 am, Kim still snoozing. Was not in bad pain at all, those meds I am sure helped. It was sore, but not like yesterday. I woke up, went downstairs, made a bagel with cream cheese and raspberry jelly, mmm try it, so good. Took my three decadron and got to work. Did about 2.5 hours of work, spoke to my boss and three of my girls at different buildings. No rest for the weary. My boss said to me yesterday “You are so amazing even when sick! Its incredible. My inspiration”.Yup. Fuck cancer. After a few hours of work, Kim got to work on his PGA stuff. I was floating away into a tearful place. “What’s wrong baby”….”just tired, in some pain, just tired”. Mentally tired. Kim fed me some water, literally, while my hands stayed under the blanket. Asked him for some crackers. Feeling the nausea most today then I ever have before, maybe my mental state didn’t help.

Mom came over around 2 pm with my handicap parking pass, yahoo. I was in the bathroom when she walked in, we saw each other, embraced and started to cry. It is hard for her, I know it is, I can’t imagine. I know when she was going through it it was terrible for me too. I could only go to one chemo treatment with her it was too hard. We sat around chatting and watched the food network. We traded, she gave me some stuff, I gave her some paper towels, we have so many, lol. When mom left Kim and I headed out to Verizon. I got the iPhone 7 plus, I am not sure I love it, it is just too heavy. I have 14 days to decide, we will see. While we were at the phone store, an older woman walked in, “is there anyone else who can help me”…..”I will be done in ten minutes”…..”we are almost done” I said with a smile. Kim went to Trader Joe’s to stock up on those ice cream cookie sandwiches, yum. The guy helping me went in the back. The womanwho walked in said “excuse me, do you do your own coloring” referring to my red hair…. “no, it’s a wig” I said with a smirk, “I have cancer” she rolled her eyes and took a deep breath, “may I ask what kind”….”breast cancer”….”I had DCIS, where are you getting treated”….”at Sloan Kettering in NYC, switching to Basking Ridge from now on. I had chemo and my port placed yesterday”….”oh wow, well you look fantastic, like the picture of health, good luck”. People are so nice. When the guy came back, the woman said, “I am going to go next door, don’t you rush her, take your time” with a smile on her face. Sometimes I don’t want pity, sometimes it warming, this was warming. I told Kim what had happened when he came back, “you told her you had cancer?”….”yeah”, rolled his eye a bit….”she had cancer too”… “oh”…. because everyone fucking does. I don’t feel weird telling people and if they can’t handle it, I am sorry for that. I am an open book, if you can’t handle it, shut me up. Until then, let’s talk about it. I am proud to talk about it. I am proud of my wig and I feel good when I talk about it.

Kim and I went home, picking up chicken fingers and mashed
potatoes on the way home, for me of course. Just filling my cravings, at least I had some protein. It was good. Then an ice cream sandwich. Aye carumba. Listen, I don’t know, I have no excuse, I just don’t care. Let’s see how much I weigh tomorrow, lol.Up to bed around 7:30 pm, was just ready to lay and blog. Now we are here.

I was watching how to be single while writing this. They played this song. I can’t wait to dance to this at our wedding Kim. “I need you babyyyyyy, if it’s quite alright I need you baby, to warm the lonely nights I love you baby, trust in me when I say ok, it’s ok. Oh pretty babyyyyy, don’t let me down I pray, oh pretty baby, now that I found you stay, and let me love you, oh baby let me love you. You’re just too good to be true.”

 

That time I shaved my head.

That time I shaved my head.

If you are just starting to follow along, start here, then here, then here, then here then here. Or just skip it all, I have cancer….. here’s where we are now.

January 2, 2017. Monday. Most everyone had off today but since I turned to hourly at work, I gotta work to earn my coins! I love working on holidays though, it is so quite, no traffic and people who usually need me aren’t there. I packed some leftover ravioli and chicken parm for lunch, yum. I got a lot of work done and I was planning on working an 8 hour today. I got in around 9 am however around 3 pm, I shut down. I felt accomplished, 6 hours seems to be my time. Left work, called Kim, he was relaxing at home. I got home and we watched The Kitchen, it is Kim’s favorite show and it is pretty amazing if you ask me. I wasn’t hungry after I got home after having a big lunch so neither of us knew what we wanted. However, my hunger hits in a split second. I was going to make Ed a ham, American cheese, spicy mustard with mayo sandwich on whole wheat bread for lunch tomorrow at MSK, our ham wasn’t going to be good for much longer. After making his and packing the best potato chips ever, I decided to make one for myself, with chips and leftover onion dip from NYE (oye vey). Then I ate two Ghirardelli chocolates (thanks Gina!), a chocolate chip cookie. Maybe I had some Talenti gelato chocolate chip cookie dough, oh no, that was Sunday night. Getting all my sugar cravings mixed up. I think I was stress eating. Bleh. Hillary came over around 8 pm. She is staying the week as Kim is off to Florida on Wednesday. He booked his annual trip with his cousin Dave. They go down to Palm Beach for the week to visit their grandparents and play LOTS of golf. At first he said he was not going to go, I said no, of course you need to go, you will need a break. When it got closer and treatment started I wasn’t feeling the same. I actually asked him to cut it short but then rebuked my request. He REALLY needs a break and Hillary will be here and mom is coming up, friends coming for sleepover, Kim’s mom coming up for dinner and making eggplant parm, YUM, others coming up as well. I won’t even know he is gone! No, I will, but it will all be okay.

Anyway, Hillary,  Kim & I watched Cake Wars as one of my best friends little brothers was on!!! So cool, he did great , came in 3rd (you rock Daniel!). Got in bed around 10 pm and the tears came. I haven’t cried in a while, go me. I just didn’t want to go to chemo the next day. “I don’t wanna go, I just don’t” …… “but you have to go, you have to get better for me”. This is true. This isn’t all about me really. I need to get better for everyone else. I can do it. I can do it for them as well as myself. Fell asleep around 11:30 pm, 24 was getting intense!

January 3. 2016. Tuesday. Woke up around 7 am for 7:45 am pick up from dad. Bleh. Put on my usual leggings, sweater and Uggs I’ve had for years(sssssss). Those shits last. Dad got here around 8 am, traffic. HE SHAVED HIS HEAD AND BEARD. My dad is bald on top but has been growing out his pony tail (yes, I said pony tail) for a long time now and beard, like cool beard, that he got compliments on a lot and loved. “Solidarity” he said as tears started to run down my face.

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We got in pretty quick, minimal traffic which was surprising with the rain. Got in around 9:30 am for 10 am blood. Parked in the MSK parking. It was so clean, people were so nice and it was valet. We had been parking in a deck closer to the center we were going because the first day the line was soooo long. But this one was $10 cheaper. Look into parking and stuff. A few tears fell as we walked toward the breast center because well, I don’t want chemo! Oh well. Got in, got blood drawn from my finger as I do each time to look at my WBC, platelets, etc. everything normal! Woot!

Went up and saw the NP and Dr. Norton around 10:30 am. They are happy with how I look/feel. The NP said she thinks the lymph node may actually be getting smaller already. Not sure about that though. Yesterday my hair starting falling out one strand, then another, then another. Today, my hair started FALLING OUT. A lot around my hairline, about 10 strands at a time. Not just a few times, every time. I texted Kim, “get the razor ready, it’s happening tonight”….”going to the store right now, we will get a new one”. Then texted mom, “you need to come up tomorrow with your wigs, mine aren’t coming in until end of week or next week”…..”ok honey”. Relief and sadness went through me. I’m losing my hair. It was everywhere. Right on time like they said. I couldn’t live like that for one more day. I took 1 mg of Ativan and waited for treatment for 12:45 pm appointment. Didn’t get in until 2:45 pm! Everyone was getting treatment after the holidays. Oh well, thankful I’m getting treated there. Walked in and we were in suite 14. Almost called ahead to get suite 8 like last time but I’m working on my OCD. I got the nurse Nora who came in after the first nurse missed my vein last time. I was really happy. Until she missed twice, and another nurse missed, 4th times a charm! She said I was cold, true, and maybe I needed to hydrate more before treatment, true. Getting a port was spoken about and the nurse e-mailed Dr. Norton.

We didn’t start treatment until 4 pm. They slowed down the second portion of the treatment (C) to help with the headache from 30 minutes to 45 minutes. We were out of there by 5:30 pm and we were READY to go. Kim was texting Hillary and I all day. He was making meatloaf, mashed potatoes and green beans. Kim doesn’t really cook, or he didn’t in the past. He is basically learning, for himself, and for me. He watches a lot of shows on the food network. So he was making meatloaf, can’t be too hard, loaf of meat. He made this by Ree Drummond. We had no idea until we walked in. IT WAS AMAZING. There was pork, beef, parmesan, special homemade sauce, fresh mashed potatoes, green beans with almonds. Like I can cook, I don’t think I could have done what he did. He truly is amazing and surprises me more and more everyday and I am not just saying that. If he sucked during this, I would tell you. He had the food plated for Hillary and I, with sauce, and drinks and just wow. We got home sat down and I ate 95% of it. That didn’t happen last time. They really give you so much nausea medication in your IV you don’t really have any stomach issues. Oh, other than constipation. Omg, my friend got me the squatty potty. More than a few of my friends have it and it disturbed me at first. I haven’t try it yet, I will get back to you. Anyway, dinner was great, then it was time to shave my head.

Popped another mg of ativan because, BECAUSE DUH I’M A 28 YEAR OLD WOMAN WHO HAS A BOYFRIEND AND WAS GOING TO SHAVE MY HEAD. Prior to even being diagnosed Kim said he would shave his head. He is balding on the top so it is kind of necessary but I would have never made him do it, probably suggested it. One of his golf members hugged him when he found out and said “you know what this means right, you actually have to shave your head”….. “I know man”. LOL. I was feeling anxious of course, sat for about 10 minutes and then the anticipation was just building and I couldn’t take it anymore. “Let’s just do it”, I said. I grabbed a stool from my coffee bar, Hillary grabbed the garbage bags to put underneath, Kim prepped the razor. We were all kind of tiptoeing around each other, no one really knew that to say. The razor kit came with scissors so I just started hacking away at my hair, more as a joke. Like hello…..

It was feeling really weird at this point, I was feeling nauseous. Hillary was behind me, tears falling down her face quickly, eyes red. It was funny and sad and every emotion in between. Hillary cut a few pieces off too. Then, it was time, “just do it Kim, do it”. He started with a 2; ZZZZZZZZZZZZZZZZZZZZZZ, the noise was one of the worst I’ve ever heard. It was intense which was good but just so close to my ear. Tears continued to roll at this point. Kim was doing well, he just went in on it, knowing that was how it was going to have to be if we were going to get this done. After he got the right side off, and I felt it, it was kind of amazing. Like wow, I have no hair right here. KEEP GOING! He did the back, then the left side then we played with a little mohawk action. Then I just said “just do it”.

It was gone. My hair was gone. So much of it. My hair is sooooo thick. The individual pieces themselves are sooooo thick. Were, they were thick. We decided to go down to a 1, the lady at the wig place suggested a 1. Plus the hair will still fall out and I would rather them be very small pieces. So, it was over. I had no hair. “I mean, you don’t look bad, you look good” – Kim. Ten minutes later, “I mean, I really like it, it looks really good” – Kim. In bed that night, “GI Jane, like this is kind of cool, I really like it” – Kim. Even if he didn’t mean it, which Kim doesn’t really say stuff he doesn’t mean, it still made me feel good. Guys, you have to say it, and you have to say it like that, just FYI. I jumped in the shower, hair everywhere. SHORT SHOWER NO HAIR LOVED ITTTTTT. Kim was up next.

He started on himself then I finished him up in the back. He looked amazing. He then shaved his beard off for his Florida trip and WOW. Not to get in too deep, but even day of chemo, I would have done the dirty he looked so good but, I did have chemo and I don’t think you can swap fluids for 5 days because of the A part of the chemo, bummer. We got in bed and I was TIRED. Almost a good tired. The day was over, another treatment done, my head is shaved and Kim is next to me and Hillary was upstairs. Good day.

January 4, 2016. Wednesday. I woke up at 5 am, ripped off my shirt and pants because I was SWEATING. Took 0.5 mg of Ativan and I think started watching Sex and the City on my phone? I am not even sure I think I passed out not too far after. Slept until 8 am. Turned over, Kim opened his eyes. He just started rubbing my head. I said,”babe, we’re bald”…. “I know, it’s awesome”. We got up, Kim continued to pack, shower, etc. for his trip. I had cereal as the we met with the RD today. She recommended it, never thought of it. Good idea. I had it with banana, slivered (is that a word, silvered? no) and honey. It was…… decent. I’ll eat it. I actually was craving coffee which I was nottttttt at this point two weeks ago. Kim made his and I was drinking some of that because he wanted to make sure I would finish an entire one. Ugh. Then he finally made me some and I only drank half, hehe.

Kim left for Florida around 11 am. No tears. It is only a week and I pretty much have every other day filled up with his or my family plus friends in between. I signed into work for about 3 hours, feeling really good and productive, not tired at all. Hillary and I then had to head to BR MSK for my Nuelasta shot because the other one malfunctioned that I had at my house. We then stopped at shop rite. I wore my hat and didn’t really think anything of it. I wonder what other people thought. The good thing is the fact that it is winter and it’s pretty normal to wear a hat and I could just have really short hair (or shaved). We collected a few things we needed, and of course a few things we didn’t need like this, I will let you know how it is. While we were checking out, I was putting my phone number into the credit card swiper thing. I was using my knuckle because so many people touch those things. I messed up the number and said, “whoops, can you restart it, I messed it up”. The young gentleman, probably 25-30 years of age, said, “I will put it in, I see you’re a germophobe” with a smile on his face, I said, “haha, yeah, I am sick, I don’t want to get all the germs”, he said, “I respect that, I get it”. I think he thought I meant I had OCD or some other type of mental illness so I said, “oh, no, I actually have cancer”. He was a little bit taken aback but after three seconds said, “when where you diagnosed?”. It made me feel good that I didn’t scare the crap out of him. I said, “about a month and a half ago, that’s why I am wearing this hat, we shaved my head last night, eek!” with a smile on my face. He replied, “oh, wow, you still look beautiful”. YA MADE MY DAY SIR. We finished the transaction and he held on to the receipt until I looked him in the eye and said, “have a great day” with huge smile on his face. So thankful for people like you sir.

Hillary and I got home, fixed the malfunctioned Neulasta shot, whoops (no she did, I sat on the couch, and then pulled out every cheese and cracker we and in the house leftover from NYE. Yum. We started noshing. Kara then came over and we were all just hanging out. Around 6:30 pm I started to go a bit down hill. Head was on the pillow and blanket was pulled up. Hillary warmed up some homemade chicken noodle soup my friend sent over (thank you Gina!!!). It was delicious and exactly what I needed. We headed up to bed around 8-9 pm and watched the Anthony Weiner documentary on Showtime. We recommend it. Fell asleep around 10:30 pm after a convo with Kim. Hoping tomorrow will be a good day as well.

Love.

Sh*t…

Sh*t…

… or lack thereof.

I told myself I was going to be very honest on this blog. Chemo, steroids, anti nausea medication and stress make you not poop. So, if you are starting chemo, start a miralax/fiber regiment. They will tell you to drink a lot of water (everyone will tell you 100 times) or eat a lot of fiber (like I know) and it won’t help. I chug water and I make spinach smoothies and I try but, no. Miralax does help, slowly but surely. Ok, no more poop talk (for now).

I wasn’t sure what I was going to have to talk about on here since I was feeling soooo good on Monday and Tuesday, and then…. I didn’t feel good.

December 26, 2016. Monday, day after Christmas. It was the first day I woke up without a headache. I didn’t think I was going to have those days. I woke up, made myself an egg and cheese sandwich with ketchup (yum). Before leaving for work I told Kim I was really feeling good and he said, “I know, I can tell, you seem good”. Went to work, got a lot done. I called Kim on my way home. He played golf (FREEZING/crazy) and he was just getting out of the shower. I wanted to stop at Shoprite on the way home, we needed food. I just wanted to see what he wanted at the store but he said he would come, he’s good like that. Got in the car and said, “If you called me 5 minutes later, I would have been on the couch and said no”…..”You didn’t have to come honey, I just wanted to see what you wanted”……”but I like to be near you”. I know when he says that he is joking but it still makes me feel good. We went to Shoprite hungry, you know what that means; cheddar popcorn, oatmeal creme pies, bacon…… mmmm. Went home, ate something a friend brought over (after going grocery shopping, LOL) and relaxed. Today felt “normal”.

December 27, 2016. Tuesday. Woke up feeling good again. I even talked to someone about how this week off after chemo is just going to be a “normal” week for me, cool! Ugh. Anyway, got to work, was training an RD into a new building. The building is 10 stories, I was taking the stairs up and down and up and up and up and down and down and up and down and up. I was trying to get some exercise in because I haven’t been and the NP recommended to do it if I could. I even started to jog (that was like two steps). It was warm that day and I wore boots and at one point was just feeling overheated and nauseous. Called my Aunt Noreen on the way home. Got home and made a spinach, peach, cherry, blueberry smoothie. At around 5:45 pm the girls starting showing up for yoga (Hillary, Rachel, Meg and Kara). We went to this place that is a 3 minute walk from my house. Our friend from HS actually teaches the class. It was a really good class. Yoga is hard. Planks, downward dogs, ugh. I do this thing sometimes where if there is a challenge, I say “If you do this, you will….. marry someone who looks like Marc Consuelos” (you do honey). So, we had to hold a plank for 5 deep breaths, so I said to myself, “If you do this, you will beat cancer”, welp, I DID IT GUYS. Boom. I was a little dizzy by the end of the class and ready for dinner.

I thawed some two pounds of ground meat and asked Kim to just cook it and put the taco seasoning in it. Simple. Well, we come home….. the meat is cooked and there is every topping you could ever want beautifully displayed on the kitchen table; sour cream, taco sauce, corn salsa,refried beans, black beans, spinach, cheese, BACON (HE COOKED BACON). He really is as good as he sounds. All the girls and I sat down and NOSHED HARD. Hard and soft tacos available (Tip:take the soft taco, put the sour cream on it, then sprinkle cheese then wrap it around the hard taco and continue to stuff, you’ll never eat it any other way). The ladies left and I was doing the dishes and started to feel tiiiiiiiiiiiiiiired, like, ouch tired. Made my nightly gatorade and miralax drink and went up to bed. I was complaining how tired I was like a little girl, about 5 years old, ask Kim, it was ugly. Went to sleep, hard….. then 4 am came.

December 28, 2016. Wednesday. 4 am, woke up, throat hurt when I swallowed, head hurt… this doesn’t seem normal. Got up and went to the bathroom. I think I took my temperature at this point:99.4. My baseline is low at 97.7 (good to know your baseline) so I thought it was a little high. I was also feeling hot, turned the heat down and went back to sleep. Woke up around 8 am, temperature:99.6. I was on the couch at this point, not feeling well, chugging water. I was taking my temperature every half hour at this point:99.6, 99.8, 100.2. No. The doctor said to call when my temperature hit 100.4 however it was creeping up quickly and since my baseline is lower than usual I was starting to get nervous. The NP said not to take tylenol without taking your temperature first and you don’t want the tylenol to mask whatever is really going on. I called and they said the nurse would call me back. I kept taking my temperature every 15 minutes and it was wavering but never went over 100.2. I was feeling a little nauseous but felt like there was post nasal drip happening. Eventually got sick but it was just phlegm (ew, that’s how you spell that, so it’s not flem?). My nose was also bleeding a little but not heavily and it was just from the inside of my nostril, I didn’t use the humidifier last night. Yup, this is life. I went back to bed around 10 am right when the nurse called. I explained what was going on and she said it is ok and it is most likely not related to my blood count (I think they look for low platelets and WBC). She said it is ok if I take tylenol and just monitor my temperature. If it continues to go up we will need to check my blood. This made me feel much better. I of course had all the thoughts of, “oh no, hospital, IV fluids, antibiotics, I won’t be able to poop even more, missing work”, the usual thoughts. Took 1 tylenol and passed out until 12:30 pm. Slept on and off throughout the day.

Kim went to get his new drivers license, after making me chicken noodle soup. He called me on the way home, “chicken caesar salad for dinner? Let’s crack open that George Foreman!”. We got a George Foreman about a month ago and still haven’t opened it. He didn’t expect me to open it or get it ready so I got to out of bed, took it out of the box and got it all set up. Kim is doing everything. Cleaning, laundry, taking care of me. The days that I am down I really start to feel guilty. People say, “don’t worry, you can’t help it”, but I do worry. Also, this means after this is all done I am really going to have to be a GREAT girlfriend/wife for the REST OF OUR LIVES, UGH, I am already exhausted. Lol. Sometimes I say we need to get a wife. I really don’t like to clean, do laundry, pick up his socks and really hate picking up my own. Yup, I am the man in the relationship. I don’t close the drawers, I throw my dirty laundry next to the basket instead of in it and “let’s play a game; how many pairs of shoes can Caitlin leave in the family room?”- end quote, Kim. Yup, this is me. I do like to cook, go grocery shopping and pay for dinner? Balance y’all. Kim made a delicious chicken caesar salad then made chocolate cake in a mug, IT WAS AMAZING. Around 7 pm it was time for me to get back in bed. I had a bit of a headache, took some tylenol and ativan. I was up until about 11:30 pm, why!? Finally fell asleep.

December 29, 2016. Thursday. Woke up. Shower time. My scalp is so dry. Ladies, you know that feeling when you have your hair in ponytail for a really long time and let it down and your scalp feels stiff? IT FEELS LIKE THAT EVERYWHERE, ALL THE TIME. I think it is dry and preparing to fall out? I don’t know. I keep scratching it and Kim tells me to shower. I am not scratching because I am dirty, I shower (not as often as he would like, but that’s like twice a day, or everyday. I am clean). It makes me look forward to having no hair so I can just moisturize the heck out of my bald head. Mmmmm. Went to work. Brought two pieces of ice in a plastic bag to ice my nose. Why you ask? Oh, just because I have a growth on the left tip of my nose. It’s like an ingrown pimple. You ever get those? It’s like on the inside of my nose but making my nose swollen and red, I am like Rudolph. It is so sore. So I iced it on the way to work then put some powder on it. Woof. I did not put any mascara on because I have a small stye on my left eye (hi, bye, lie, tie). I guess I could have, I just don’t give a sh*t. Went to work, felt very, very tired. Pushed through. Around 1 pm had a coke. Coffee isn’t going down. I know coke is bad for you and it’s sugar and it probably causes cancer, but it cures life. My headache went away and I pushed through for a few more hours of work. I think I am getting my period soon from the shot. I am not due for a while but I am more emotional like that time of the month and, hello, this pimple growth.

I started crying on the way home. When I think about going back to chemo, it hurts my soul. It makes me nauseous. It makes me want to cry. I don’t want to go back. Why would you want to go back somewhere to sit and have something pumped in your body that makes you feel tired, nauseous, hungry, not sleepy, then sleepy, not feel like yourself, like someone has taken over your body? YOU DON’T WANT TO. You want to stay home under your covers and pretend that it isn’t happening. I called mom thinking I would stop crying but it just came harder. I got into that ugly cry. I hate doing that with her because then she starts to cry and she makes me want to cry more. She said she wishes she could take it for me. I giggled because she already did it! Moms are the best. I just cried heavily saying I don’t want to go back, I don’t want to be tired anymore, I just don’t want to. She said “I know honey, but you will get through this and it will be okay”, sobbing as well. It’s just sad. She went out to dinner with one of her girlfriends (thank you), “Meg knows Dr. Norton, she said he is the best in the world”. I know he is and I am very thankful for that. I don’t doubt that I am going to be ok. I don’t doubt that I will make it through this. I just, I am just tired of it already. People are praising me for being positive and strong and I think most days I am. Today, I was weak. Today, I was emotional. Today, I didn’t want to have cancer anymore. Today, and right now, as I write this, I just want to cry. It’s ok. It’s going to be ok. As Aunt Allison said, “Ya know this really sucks, it all sucks, but the hardest part is that everyday you still have cancer. No matter if you’re having a great day or not, you are still going through this and you just can’t forget it”. She is exactly right. No matter if I get everything checked off on my list at work, if Kim and I have a great dinner, if I feel like a million bucks, right now I have cancer and am going through chemo and my body isn’t my own, it is married to Sloan Kettering. I can’t wait for the divorce.

Tomorrow will be better. Tomorrow I will wake up and make myself smile. Tomorrow I will try to forget for a little bit that I have cancer because other than this fucking cancer, my life is pretty fucking amazing.

C & C (not a cocktail; Christmas & Cancer)

C & C (not a cocktail; Christmas & Cancer)

I am finding out that more people are reading this blog than actually know me. Let’s do a little review of all the people I mention.

The obvious. Mom. Dad. Kim – boyfriend, not Asian (German), family name, live together, I think of him as my husband, three years coming up on Valentine’s day, marriage=commitment=chemo.  I have never been the girl who is dreaming of her wedding. I never really thought I would get married until I met him. Still don’t know what marriage really means to me, he says the same. I am not religious (is this why this happened to me? Of course it is in the back of my head) and I think weddings in general are a pretty big waste of money, let’s not even talk about the divorce rate. I mean, we will get married one day, it is just not high up on our priority list. Nathan – brother. Hillary – best friend from high school, cousin of Kim (she introduced us ok??). Sometimes I think of Kim as the love of my life and Hillary my soulmate. Rebeka – best friend from high school, lived together in Morristown for almost three years, she’ll do anything for you. Kim & Pat – Kim’s parents. Others are all friends and family.

When you have cancer, and if you have it like me, where it is in my breast and in my armpit and suspected to be nowhere else, it is important to remember your entire body is not cancer. Really, I have some “bad” (horrendous, disgusting, mutating, annoying, bullshit, hatred) cells in my body that just need to be murdered. I am not one big ball of cancer (even though sometimes I feel like it). It’s disappointing because I have GREAT boobs. Someone in high school once told me she wants to get her boobs done to look like mine, like helloooooo, awesome. Great enough to be infested apparently. Ugh.

December 22, 2016. I woke up around 8 am. Went to sleep around 9-10 pm last night, woke up at 3 am, watched some Gilmore Girls on my phone, took 0.5 mg of ativan and a tylenol because of a headache. Listen, I am not one to take medication like this. Well, I did take a lot of advil before, but I have cancer. Sleep is one of the most important parts of getting through this (I think). I went to my PCP in January of 2016 for my annual (DIDN’T FIND ANYTHING DOC???), and I told him sometimes I feel sad and depressed and maybe I need to talk to someone about going on medication. I really didn’t want to. So I started seeing the “collaborative psychologist”. Why am I using quotes? Because they said it was this “new thing” and it was “awesome” and it would be “$20” each session. Cool, I will go. Welp, ended up paying nearly $1,000 out of pocket (and now I have cancer, can I catch a break?). Anyway, I saw this guy, and I immediately said to myself, you need to work on your shit, you don’t need medication, you need to breath, workout and get some inner piece going. It really helped me. I never went on medication and I was so happy about that. I never wanted it to change my thought process or my inner desires. But now, I have cancer, if I need something to help me sleep, feel less anxious about the terrible shit growing in my body and feel less nauseous, I will be taking it as recommended, nothing more, often much less, not during the day, just at night. Why am I trying to defend myself, I HAVE CANCER (I can use this line for the rest of my life I am told).

Anyway. This is Thursday, I went into work. I packed my usual PB & J sandwich size english muffin, took my 3 decadron pills (last for this round) and ate the rest of my sandwich at work. I tried to dress up to feel good, dried my hair, not too much make up because no one got time for that. Did a decent amount of work, everything up to date and lasted about 4 hours, not too shabby. Drove home, was hungry but didn’t know what I wanted. Then, a burger came into my head. I called Kim, “Should I get a burger? I mean I am craving it, I don’t know what else I want, is it bad?”…”hon, if you want it, get it, I wouldn’t mind a burger either”, lol. I then called Hillary on my way to Wendy’s, she was on her way up form D.C.. “So should I eat Wendy’s??”… “I just picked up some fries, so yes,  of course”, lol. It tasted pretty darn good. I got a cheeseburger, fries and a  coke. The coke tasted a little off but it really hit the spot. Got in my PJ’s (Thanks Aunt Peg!!) and then went to lay in bed. I was feeling like I needed some nutrients so I made a blueberry, banana, spinach, kale, olive oil, water and OJ smoothie, drank about 3/4 of it felt pretty good. Went to sleep around my usual 9-10 pm. Kim was watching the Giants game, he came up when it was over. Gave me some kisses and I said “did they win?”…. “no, but I still love you”…. “ok good, night”.

December 23, 2016. Same, same, woke up at 3 am, GG, ativan. Went back to sleep around 4 am. Up at 8 am. I think the steroid is still keeping me up, hoping since I did not take it today it will not wake me up tonight. Got up, felt good. Got dressed, left for work, at work by 10 am , worked, felt pretty tired. “They” said it would hit me a little bit harder today. I am not really feeling it but I think once the steroid wears off it will sink in. I left work, called Kim then called mom, this is around 1 pm. I wasn’t really feeling much of anything and then just started to cry. It was a beautiful day in NJ; nearly 50, sunny, tomorrow was Christmas Eve and I have cancer. I was also hungry and did not know what I wanted and just getting something I crave seems likes such a to do. Crying isn’t a bad thing, it’s a release and it is natural. I got home, got in my PJ’s and had some nachos, salsa then cheez-its and salsa (I don’t knowwwwww). Called Kim and asked him if he could pick up a tuna sub from Jersey Mikes. “Do they have soft bread?”….”so soft” he said. Mmmmmmm. Took a nap and he was home around 3:30 pm. Had half the sub, started chugging my water again and sat down on the couch and just hung out. We watched Sully. I mean, it was ok? No, not really. Maybe it is my state of mind but there was nothing much to it. I am no where near depressed (THANK GOODNESS, I might be in the future, stay tuned), but I can see how it can be depressing. Kim got hungry around 6:30 pm and made some nachos, yum. At about 7 pm I really started feeling really tired. My back started to hurt, ribs, chest. I think the Neulasta shot pain is starting to set in and the steroid is starting to wear off. It is time. I put a lavender rice warmer thing around my neck but all smells bother me; candles, flowers, bleh. Kim has a heater, we turned that on, put it on my back and now on my chest. Ending the night watching Diners, Drive-ins and Dives. Mmmmmm. Merry Christmas Eve, Eve.

December 24, 2016. Usual night routine. Woke up around 8 am. I really needed to do some laundry, my only non-holey tights I had were dirty (which got a hole). Got up, threw the laundry in, laid on the couch and actually think I fell asleep. Woke up around 9:30 am with 2 missed called from my dad. “Hey, I was in the bagel place, wasn’t sure what kind of bagel you wanted but then heard a guy say ‘cinnamon raisin’ and knew that’s what you wanted, see you soon”. Got up, threw the laundry in the dryer and went up to wake Kim up. He’s on his off season (he’s a golf pro, cool, I know), so he’s starting his routine of staying up late watching movies and sleeping in. He has off from January-April and deserves every last second of it. One of the hardest working people I know. Got in bed, “Kim, wake up, dad and Nate are coming”……… then the tears. “I’m just sooooo tired, I don’t want to be tired, I’m tired”….. “it’s ok, this is what they said would happen, we will get through it”. Again, the tears aren’t always bad, just a release. Some tickles and kisses, and we’re up. Kim hops in the shower. I take out the butter, jelly, cream cheese (whipped YUM). Dad and Nate show up with a dozen bagels. We make some bagels, start Christmas Vacation, 30 minutes later I’m asleep. Ugh.

Around 1 pm one of my friends husbands stopped over with a platter of brownies & chicken and rice for a few dinners for the week & says “gimme a drink! I’m stopping off at a bunch of places and want a drink at each one, you’re the first!”. Grrrrrrrrreat guy. I grab the champagne and OJ from the fridge and pour him & Kim a drink.

Shower time, UGH. I don’t know why I hate showering. Just takes so much time. Maybe after I lose my hair I won’t think so? I used to have really long hair. Did I say that already? Oh yes, I donated about 12 inches to locks of love prior to this. Ok, showered, put a decent full face of makeup on, eyelashes, LIPS, STRAIGHTENED MY HAIR. I was really feeling decent at this time. Kim throws on his suit, I throw on my dress & we fly out the door with presents & overnight bags to stay at his parents. We went to Kim & Pat’s first to have a gender reveal for his sister Rachel. It’s a girl!!! We are thinking Kim Caitlin or Caitlin Kim, still up in the air.

Off to the big family party. Kim has a great family, about 40+ people. Everyone brings something different to the table. At first, no one came near me. Hillary and I were on one side of the kitchen and it was like there was a line of fire between us and the rest of the family like I had the plague. Honestly, I am a loner to begin with, I don’t mind it and I don’t blame them. They don’t think I am contagious (maybe a few) but they don’t know what to say. I get it. Let’s review what you say to someone who has cancer.

  1. “Hi, how are you??”
  2. “I am sorry to hear about your diagnosis, how are you feeling?”
  3. Hug, “I can’t believe it, you look fabulous”
  4. “I don’t know what to say” hug. SAY ANYTHING. I know what to say to you, “I know, it’s crazy, it will never feel real, it sucks, but I am feeling ok”.

Maybe they were thrown off by the big black and blue bruise on my left arm. It did match my blue dress perfectly. In the end, I felt pretty great throughout the party. Tired at points but I think I would have naturally. I didn’t drink anything. The NP said I could if I felt up to it but I just didn’t feel like it. I just ate a lot of tortellini and some sweets. I am craving carbs. I am not sure why. I am assuming because my body needs energy and the brain loves carbs.

The end of the night was my favorite part. Kim had a lot to drink. He deserved it. He was with his family, he was with one of his favorite people in the world who he doesn’t see often (his cousin Pete), he has been an amazing human and has worked 60-80 hours a week for the last 8 months. He deserves to let loose. I went to bed first, he was hanging with his neighbors. He comes up in his suit, I am watching Gilmore Girls on my phone after doing a little blogging, just being very content. “I am sooo happy”…. “why honey?”…. “because you’re happy, I am happy, it’s just amazing”. His laugh, his smile, it was truly Christmas.

I stayed up pretty late that night, around 12:30 am. The last thing I remember is Kim saying, “24 IS ON AMAZON PRIME, OMG THIS IS AMAZING”. Lol. Woke up around 7:15 am, finally slept through the night! Woke up with a headache, I think this will just be a normal occurrence. Turned over and fell back to sleep until 9:30 am. Woke up, was FINALLY craving coffeeeeeeeee. Had some coffee, crumb cake, scrambled eggs and headed to moms around 2 pm. Opened lots of gifts! Hats, gloves, scarves, scrabble, cheez-its, chocolate, candles, gift cards, OH MY. Oh and my favorite gift, remote control scentless candles, helloooooo, genius. We had ham, yum, mac and cheese, yum, broccoli, forced it down, applesauce and rolls for dinner. Yum. I love my mom. She’s one of the cutest people you will ever meet. She’s small, not like me. She’s been through this before and you would never know and it’s truly amazing.

Kim and I headed home, cleaned a few things up. He plopped on the couch, I plopped in bed. It’s Christmas and I have cancer but it was a great Christmas.

P.S. People are asking what they can do to help. While flowers are nice, they eventually die and we have started a vase collection on top of the cabinet. Here are  a few suggestions.

  1. Food. We can always use food, we love to eat. Prepared meals are good. We love italian, chicken and rice, tacos, pretty much anything. My appetite seems to be back to normal (even more intense) the week after chemo. During chemo I stick to crackers and peanut butter pretty much but Kim needs to eat food.
  2. Shoprite/Trader Joe’s gift cards.
  3. Drop off some water bottles, toilet paper (Charmin Ultra Soft), paper towels, laundry detergent, etc. We ran out of toilet paper. I’ve never run out of toilet paper. Ugh. It’s harder to get around to this stuff.
  4. A simple text helps.
  5. Check on my family. Take my mom out for dinner. Take her to the movies. Sometimes she needs to forget her 28 year old daughter has cancer.
Cancer.

Cancer.

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.

  1. I am going to lose my hair and Kim has already said he will shave his too (a few will understand this).
  2. I can get handicap parking for the duration of my treatment, like HELLO, AWESOME.
  3. 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).
  4. I am getting this out of the way. I am 28, hopefully I won’t have to worry about this at 58 now, suckers!
  5. I know A LOTTTTTTTTT about insurance, like a lot.
  6. I donated my hair to locks of love (and received my certificate of appreciation today, ironic).
  7. I am really learning about the people who love me, and the fact that it is way more than I thought.
  8. 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.
  9. Maybe lose some weight? I mean come on, I know you thought about it.
  10. 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.