Recovery X2 (Part 2)

I just ate pizza! Wahoo! I made it really soft in the microwave and cut it into tiny pieces and then used the roof of my mouth to maneuver the piece to the back of my mouth to lightly chew. VICTORY IS MINE!

So this was the scheduled hospital time – my tongue surgery last Wednesday. A lot of us cancer patients always have another bizarre thing wrong with them, well mine is in my tongue. I have a benign Arteriovenous Malformation (AVM) on the under side of my tongue. I noticed it in fifth grade and it slowly grew with my age. Docs had been watching it over the years and confirmed it was benign, but would grow with age and change with my hormones. It started to give me jaw problems and on some days it would swell and affect my speech, so I decided it was time to take care of it.

Boston Children’s Hospital is the place to go for these. Their Vascular Anomalies Center is world-renowned. The plan was to do sclerotherapy on my tongue, which basically means they do an angiogram to see were the blood is flowing and inject my tongue in different places to clot the weakened vascular walls. When I finally made the appointment for this procedure I couldn’t sleep because I was trying to maneuver my tongue in all different ways to make it feel 2-3 times the size. The docs said it would swell to at least 2-3 times the size, and I would be in the hospital anywhere from 1-10 days – if 10 days then time in ICU. That’s not a big range or anything!! My doctor called it the “tongue party” because it is very unpredictable how much it will swell.

***

Parental units arrived to my condo the night before surgery. My dad had his foam pillow and my mom had a ton of presents for me including a new monkey – Cooper! We watched a little of The Voice, I briefed my parents on my typed document with all my doctor info, (I get anal before surgeries; I guess that’s how I deal) and then we caught some zzzz’s.

To be honest, I wasn’t all that nervous for this procedure, I think mostly because I was hungry, (couldn’t eat the morning of and it was a 1:30 procedure) and I just didn’t have the energy to be nervous. The recent ER visit took everything out of me and I had no choice but to just go with it. Also, I unfortunately knew the drill.

We waited for about 20 minutes in the Interventional Radiology reception area with Dora the Explorer on TV and the tiny kids chairs with baby tennis balls on the bottom of them. Mom and dad were sitting and I was pacing in true anxious Becky fashion. The nurse then took me back to get my vitals, ask me a bunch of questions, and put on my gown and those gross hospital socks they give you. Then the fellow came over to talk me through the procedure and the doc came to see me too. I felt…calm?

Mom and dad came back and the anesthesia team came to see me. I, of course, asked for several “cocktails” and they assured me I’d get them. The anesthesia resident with the biggest rock I have ever seen (almost ugly because it was so big) put in my IV. Before I knew it, it was time for my cocktail. These things are great, you instantly feel drunk (?) but the best happy-feeling drunk. I think I kissed my parents and they wheeled me into the room. I was much more alert for this than my other surgeries. I moved onto the OR table and had to put my head in this circular foam thing. They gave me some oxygen, put a blood pressure cuff on that was tight for too long, and told me to think of a nice place. SEE YA.

***

Beep, beep, beep. “Becky, Becky…” It was over and I was awake. I immediately checked my surroundings and I seemed to be in recovery and had no tubes in my mouth or anything. My tongue was really swollen, but I felt more alert than when I woke up from my other surgeries. Where are mom and dad?

A few minutes later mom and dad came in and said I did great. Mom gave me Cooper and he immediately went between my chest and my chin. My mom told me the doctor said it went great and it was a “textbook tongue.” The fellow came to see me a few minutes after that. The doctor couldn’t come because he was busy at a reception getting an honorary degree, ha! These doctors are unbelievable.

I started with a red ice pop with a towel wrapped around it. The pain wasn’t really that bad. It was just the swelling and numbness, granted they were giving me IV pain meds and steroids. After shift change/a couple hours later I got to my closet of a room. The floor docs came in to see me and it turned out I worked with one of their wives. Small world! They said they wanted me to stay overnight because the swelling could get worse day two or three. So mom and I were hunkering down for the night and dad went home to my condo. Mom had to sleep on this chair turned bed thing.  At first it was too far for me to reach her hand through my bed rail so I made her move closer so I could reach J. My nurse was a doll, his name was Bong and he took care of me all night and tried to be quiet when changing my IV meds.

The next morning I was ready to go! I literally did a little flailing dance in my bed because it was so different to have surgery where I could move my whole body. The fact that I’ve had three major abdominal surgeries actually helped with this recovery, because my perspective is probably different than the average person. This was a walk in the park. Would I have opted to not take the damn walk if I could have? Yea, but what are you gonna do.

Mom and dad got me home and in bed for a nap, while mom made me homemade soup. It was so nice to have them taking care of me because the ER experience was so awful :/. Mom woke me up during the night to give me my meds. The next day mom and dad cleaned the crap out of my condo and hit the road.

Recovery…soup, pudding, painkiller, applesauce, antibiotic, sleep…repeat. Each day my tongue is less swollen. If that is anything I know about recovery, each day gets a little easier.

I hope that I don’t see the inside of a hospital again anytime soon…

Recovery X2 (Part 1)

I haven’t written in a while because, well, I have been recovering x2. One of these recoveries was planned, and the other was not. What I have learned about myself is I can’t really write during recovery; I just need to focus on getting better. As I look around my condo full of flowers from my amazing friends and family, I am so appreciative of their generosity, but I just can’t wait for the glum recovery phase to be over.

***

About two weeks ago, I went in for an appointment at Dana Farber. The appointment was to get labs done and then my Zometa infusion – the medicine for the bone loss the Lupron and Letrozole have caused. I had a really tough time making the decision about going on the bone drugs or not, but finally came to the conclusion that my life is more important than an unborn child right now. (My main reservation about taking the medicine is that the doctors don’t know how it affects children. I likely can’t have them but always hold onto a tiny bit of hope.)

After waiting an hour for labs to come back and meeting with a woman who coordinates the Young Adult Cancer Program at Dana Farber – cause I need to get more involved ha – I was back up on the sixth floor for my Zometa infusion. Most people take a pill form of these bone drugs but because of my acid reflux they said they would give me this one-time infusion. Great! My nurse Kerry (WHO I LOVE) comes in and we chat it up about boys, her new Anna Beck jewelry from the boyfriend, and shoes, of course. She puts in my IV and sets up the 30-minute infusion. The doctors told me that the only potential side affects were MILD flu like symptoms for the first 48 hours and I really shouldn’t worry about it. So I get my meds, pack it up and head into work.

Later that night I was living the typical single life, picking up dinner at Whole Foods. I started having this weird chest pain, but just ignored it and thought it would go away. I get home and can’t even finish my dinner. The pain was pressing so hard on the front and back of my chest that I would grunt when I tried to breathe in and out. Then came the chills…I just couldn’t warm up. I put on that new Nicholas Sparks movie, The Best of Me and just tried to get into bed. It would just go away, right? I don’t need this right now. I called my parents because I started to panic and well then, they did too. After about an hour of chest pain and my mom calling me every five minutes I started hysterically crying because I realized I needed to go to the ER. Fuck. That moment when you realize you have to go to the hospital? It just sucks. My parents and I suddenly shifted into panic mode and were trying to quickly figure out who could take me to the ER. I didn’t want to go in an ambulance. I texted my wonderful neighbor downstairs and he immediately came up. I was already dressed with my winter hat on, hysterically crying, gasping for air, and snot all over my face.

My neighbor got me right in his car and drove me to Brigham and Women’s Hospital. While trying to breathe, I was sending my parents phone numbers for my doctors and friends so they could come be with me.

We pulled into the ER and my neighbor asked if I was okay to walk in. I said, “yes, yes.” The minute my feet hit the pavement, everything started to go fuzzy and dark and I got hellishly dizzy. Then, noodles. My legs were noodles. Luckily I was able to grab onto one of those large silver poles where you pull up to the ER, so I didn’t go down. I started screaming my neighbor’s name and full on panicking, hanging from the pole. My neighbor jumped out of his car and came to help me, while some guy slowly walked up behind me with a wheelchair and casually asked if I needed it. Yes I fucking need a wheelchair; I just collapsed IN FRONT OF AN EMERGENCY ROOM. AREN’T YOU SUPPOSED TO HELP ME?

They wheel me in and some miserable woman asks for my blue medical card, with NO urgency. Meanwhile, I was shaking, crying, gasping, and all of the above. I rifle through my purse and yank out the card, mumbling under my breath, “of course ‘cause this is fucking America.” Yeap – I was upset. Then they ask me if I have been to Africa and finally bring me into a room to get vitals. This nurse with a bad dye job and a scrunchy, yes a scrunchy, asks me about every medicine I am on which takes forever to go through. I try to tell her that I have Sarcoma and think I am having a reaction to a medicine. Bruce – the medical assistant is in there too with a smug look on his face, chomping on his gum, and not even cracking one leak of compassion. I even tried to joke with him about my bear named Bruce – but nothing. After that I got to spend even more time with Dick, I mean Bruce, as he hooked me up to an EKG. It is highly uncomfortable having an asshole man you don’t feel comfortable put monitors on your boob. When he was finished I said, “do I need to keep the leads on?” He says, “Those aren’t leads, don’t believe everything you see on TV. And yes, keep them.”

After the EKG, I thought they would bring me right back. I mean I was having extreme chest pain and trouble breathing! Right back is not where I went, I went to the waiting room for TWO HOURS. The ER is probably one of the worst places on earth.

Shortly after my EKG my BFF Jennie came to relieve my neighbor. Did I mention the ER is the worst place ever? Everything takes FOREVER. After finally going back and getting a bed, they put in an IV and took labs. Two hours to get those back. Then they wanted to do a chest CT – oh and had to put in a different IV because the first one was in the wrong place, excellent communication ER staff. Two hours for the CT results. They were pretty sure I was having a rare reaction to the Zometa but had to rule out a blood clot or PE. Oh, and when I say rare reaction to Zometa I mean my expert doctor had to look up case studies for this reaction. SERIOUSLY, BECKY? YOU ARE HELLA SPECIAL! Six a.m. rolls around and THE amazing Jennie is still with me. The doctor comes in and says they saw a spot on the chest CT that could be something or “just an artifact,” and they want to do another type of chest scan and a leg ultrasound to be sure. At this point I had to let out a little cry because I just wanted to go home and wanted my parents who couldn’t get to me because there was a BLIZZARD that was about to start.

Another two hours later and they transferred me to observation, which is between the ER and getting admitted. At this point the fever started and Jennie and I were eating sub-par breakfast sandwiches from the hospital cafeteria. At around 10 a.m. Jennie was relieved and Ryan and Amanda came to take the day shift. (I don’t know what I would do without my amazing friends). Amanda took over secretary duty from Jennie and talked to my mom and doctors as I was in and out of sleep. Each time I woke up “transport” was there to wheel me (on my stretcher) to the next test. Finally after everything came back negative they determined with certainty I had a terrible reaction to the Zometa. My endocrinologist felt terrible and was baffled by the reaction I had.

By 5 p.m. on Saturday (I went into the ER 11 p.m. Friday) Amanda and Ryan had me back at my condo to rest. It was recovery time. Tylenol every four hours for the fever, fluids, and lots of sleep and TV for three days…

And here I am two weeks later on the couch recovering again…to be continued…

Laugh Always

Thanks Momma for inspiring this post and reminding me of a hilarious story from one of my surgeries. As much as I have cried, screamed, pouted, you name it, I have laughed MORE! Laughing, crafing (crying and laughing – my friend Jennie and I named it), whatever! – it’s what gets me through and lifts me up. Here are some fun stories of laughter.

**

I was recovering from my first surgery at home in Albany. I spent most of my time in my dad’s recliner because it was THE only thing that felt comfortable. I couldn’t lay flat in a bed and would have to sleep in the chair. My family would have to help me out of bed, down the stairs, into the chair, and into my nightgowns (yes this was all I could wear for weeks and those AMAZING stretchy hospital underwear). This help also included showering me. I couldn’t bathe myself and just standing in the shower for five minutes took all the energy out of me. It was a huge task to go upstairs and clean my little tushy. Well, one day when my sister was bathing me, (thanks Allie J) I noticed how heavily she was breathing – she has allergies so tends to breathe heavy, but since she was so close to me it sounded like a rhinoceros! I said, “You are breathing like a rhinoceros.” Next thing you know we were both CRYING laughing. I was actually crafing because laughing hurt like hell with the pressure of the 32 staples down my tummy.

**

After my third surgery I was back at my old apartment in Boston with my delirious mother. Delirious because she never left my side in the hospital and brought me back to life. I was relaxing – or trying to – on the couch and of course my mom was running around the apartment cleaning anything and everything she could find. My mom could find dust where dust doesn’t exist. All of a sudden I see her with the Swiffer and she slips and does a full out split. I started cracking up which then turned into grabbing the pillow for my belly and yelling at her because it hurt so much! She was rolling around on the floor laughing too.

**

Panic attacks happen. They actually happen a lot on my drive home from work, which is definitely not the best time because I am DRIVING a “potential death machine” as my mom called it when I first got my permit. They happen on my way home because I have likely been holding in my emotions all day at work. So it basically starts with hyperventilating, my whole face tingles, then comes the crying, then comes the muscles getting all tight, and the anger and the flailing in my seat and the screaming. At some point during all of this I call my parents. Sometimes my mom is so upset to hear me upset that she says hold on and throws the phone at my dad. SOMEHOW he manages to make me laugh by saying the stupidest thing!! “So I saw Casey M. working in Stewart’s can you believe that. He dropped out of college.” What?!! So random of my dad to say – Casey graduated high school with my brother but was always a little bit of a question mark as to whether or not he would go to college or just end up staying in our home town. The randomness made me laugh and completely distracted me. I did my little I am still crying but also laughing and you are ridiculous laugh/grunt thing. Thanks, Datty. (My dad has many names – Little Ronald, Faja, Datty, Mr. Sir…)

**

My second surgery I had this adorable redheaded Irish nurse for one of the night shifts. Her name was Mary and she was just a gem. As with every nurse, my mom (a nurse) watched her every move. Some got the evil eye, but Mary was a keeper, she got an A. It was probably somewhere around 3 a.m. when Mary came in to give me my heparin shot (blood thinner shot into my thigh that stings like a biatch). Mary tiptoed in and explained what she was doing in her little Irish whisper. My mom was sleeping on the chair to my left. Then, poof, my mom was up and at ‘em standing right next to Mary, like the sneaky guy with the foot fetish in the movie Mr. Deeds. Mary got very startled and in her Irish brogue said, “Oh, I didn’t even see ya there.”

**

Surgery number two, back at the apartment again with my mom recovering and I was on the toilet – sure you wanted to know that. The reason I tell you that is because from the toilet I could see into my bedroom. (I was just peeing for the sake of this story, don’t worry. My mom would help me onto the toilet then leave me alone for a few then come back to help me off. Dignity, shmignity.) I look up and there is my 50-something mother trying to walk around in a pair of my three-inch Nine West stilettos. Okay, now let me define what trying to walk in these looked like – she could barely lift up her feet, was wearing her pajama pants that always manage to shrink and look like flood pants, and was concentrating very hard. I said, “WHAT are you doing?” We both looked up at each other and starting crying laughing.

**

Those are just a few stories of laughter for now. One note I have to end with is that my dad is very attached to his recliner I mentioned – it is his buddy. Of course he didn’t think twice about giving it up for me for a month because it was all I could get comfortable in, but I know he missed that thing like a fat kid misses cake. When I was starting to feel better and was able to get comfortable in other places, I came downstairs one day and there was a piece of paper taped to the recliner that said “Eviction Notice. This chair is now being returned to the care of Ronald A. Sail.” Very funny, Datty! J

Being that it is February 11th, I have to give a Happy Birthday shout out to my one and only rhinoceros, my sweet chinchilla, my other half -- Allie Wik.

The Receiver

I was in seventh grade and was going through that awkward middle school stage with friends. I was trying to fit in with the “cool crowd,” but was too naïve to realize they were treating me like shit. To my mom, it was very obvious, but I unfortunately had to learn it on my own.

I remember I had a group of the girls over to my house and we were planning Christmas presents for each other, secretly whispering to one what we were getting the other. The next thing I knew they were all faking stomach aches and called their moms to go home. I was so disappointed and didn’t understand what I had done. While they were there I had told one that I got another this awesome Clinique lip gloss set and she promised to keep it a secret. I was so excited about this gift! It was the brand-new sparkly Juicy Tube set.

The next day at school, the girl I was giving the lip gloss set to came up to me in the cafeteria and said, “Becks, I have a lot of lip gloss.” I was so upset. Not only had my other friend broken my trust, but this friend didn’t like the gift I was going to give her. As soon as I walked in the door after school that day, while I was still throwing my backpack on the floor and yanking off my coat, I said to my mom, “I have to get her another present. She said she has a lot of lip gloss.” In my young, naïve mind I didn’t see the immaturity in the situation and that these girls were not being very nice to me. That was when my mom drew the line and she said, “Becky, you are not getting her another present. The lip gloss set is a very nice gift.” I stormed upstairs and slammed the door and the pout session in my room commenced.

***

Although seemingly very trivial, this story is actually fairly significant. It was the first time I learned the hard “receiver” lesson and that you need to pick and choose your friends and the people you surround yourself with wisely. Now that I am 27, I think I have learned quite a bit about this lesson and have surrounded myself with amazing people. Unfortunately, it is a lesson that takes a lifetime to learn and there are always going to be people that disappoint me. The thing is, I see the best in people and I am just hoping for them to respond they way I want them to – or the way I would.

In my last post I talked about having confidence when telling my story; which I have learned is SO important. But, here is the thing, who am I telling that story to? Who is the receiver?

This is a very complicated question for me because I have a hard time telling my story to begin with – so, when do I tell it? To who? The rule of thumb that I have come to follow is, I tell it when I am ready, and feel comfortable telling it (to the receiver). In the past I have “let the cat outta the bag” and received a horrifying response. One particular time I can remember I wanted to just puke and run away. The person made a joke, was completely insensitive and made me feel like an idiot. He was obviously too immature to handle the information and I had not built the relationship with him that I thought we had. Looking back at the situation, I now know that this receiver was not ready, if ever, to receive this information. I wanted him to be, feel and act in a way that he was not capable of. I wanted to return the lip gloss set, buy a different present, and hope for the response I expected.

I recently told my story to two different co-workers. After knowing both of these people for a good amount of time, I got to know what kind of people they are, what they stand for, how caring they are, and was confident they would respond positively. I chose correctly. The first individual simply said, “I know I am supposed to feel bad for you, but that isn't my instinct here. You handle this so incredibly well I just want to say that I am amazed.” That really made me so happy because that is how I aim to live my life. Look fab, exude happiness, kick life in the ass and oh, wait there is that thing going on in the background.

The second individual was just so great. I knew she would be because I just felt that comfort level with her. To be honest, I didn't even get the sweaty palms, heart racing anxiety before telling her. She is already one of my biggest supporters; wanting to come to any speaking engagements I have, help me with my volunteer efforts and read this blog J.

Everyone goes through the “receiver” lesson with friends from middle school, to high school, well into their adult years. I now realize even more so why it is important to surround yourself with amazing people. Life happens. The right receivers won’t even flinch when you tell them something serious and will do everything they can to support you.

Note: To the girls involved in the lip gloss “thing” if you read this I love you dearly. We were in middle school J. Thank you for the lesson and you are among my biggest supporters today – and I of you.

Confidence in Weakness

I’ve been wanting to write for days now and all of these ideas have been floating around in my head, but I just couldn’t put my fingers to keyboard. I had a feeling after Soul Cycle tonight with Sal I would have the urge, and what do ya know?! I think Sal is my muse. He was on a "breaking down walls" kick tonight, and realizing your own strength, which only comes with facing challenges.

I have always had a tough time being weak, I swear, since I came out of the womb. I have this thing where I feel like I need to put on a strong face for myself, and for everyone around me; but why? What I have realized is if I don’t break, fall, and even sometimes wallow, I can’t get to that strength on the other side of the wall that Sal talks about. There is SO much strength in weakness – it is actually beautiful. I am still working on accepting that and being confident about it. I will always be dealing with what I have, accepting it, fighting it, but I have to find confidence in my weakness. This (Aggressive Angiomyxoma) is what I have and who I am, like it or not! I am very good at having that attitude with other things in life, but not with my Sarcoma. If I am secure with my weakness, when I tell someone for the first time, their reaction will be so much better. It’s like when you make a big deal out of something, it naturally gets other people all worked up, right? Well, if I am confident when telling someone story, it will put them at ease, and I think, even elicit a different reaction. One of my GREATEST fears is telling my future husband (where is he?!) what I have. But heck, this is me and I need to own it. And, to be honest, I have faced much worse in life than having to tell someone what I have going on.

Tonight I want to share a little excerpt from something I wrote several months back when I thought I was going to write a book – ha! That got too daunting when I was five pages in and only on day two of the hospital stay of my first surgery. Here is a snippet, which is by no means complete and I keep editing. This is me being confident in my weakness – and all it’s glory!!

***

First surgery: October 26, 2010.

My mom drove me to the hospital that morning and my dad, brother and sister planned to meet us there. I will never, EVER, forget that morning, nor will my mom. I had to be there at 5:45 a.m. because I was first case. It was dark outside and I think I was crying as my mom held my hand the whole way there. To this day I get anxiety when I drive past the exit we got off for the hospital. 

We got to Admitting and I had to get undressed, put on a cap and gown, and this weird blanket. I was on a gurney with curtains to my right and left. It was weird and looked like the TV show Mash. A nice nurse came over to put in an IV and check my vitals. I think I was crying. My blood pressure was something outrageous like 160 over 90. I generally have textbook blood pressure. I was terrified – a fear a can't even describe. My mom kept holding my clammy hand. Next, the anesthesiologist came in and introduced herself and said she was going to give me some “cocktails” to calm me down. She gave me one into my IV and I instantly said, “It’s not working. It’s not working!” So they gave me another. After some questions and paper work, the nurse anesthetist came over and said, “Are you ready?” I was not ready. I felt like I wanted to scream, cry, jump out of my skin and escape all at the same time. I looked at my mom with tears streaming down my face and she gave me a huge hug and a kiss as they started to wheel me away. The last thing I remember is bright lights and seeing Dr. Albany (his nickname) come in with a Halloween surgical cap.

I was awake. I felt like I could barely move and my mouth was dry. There was a nurse there asking me things, so I realized I must be in recovery. My belly was sore and I was in and out. I would open my eyes for a little and then closed them for a bit.

My sister, mom, and dad came in to see me. I later found out they got special permission to come see me in recovery, thank God. I was so scared. My mom was talking to the nurse. “She has not output! She has no output!” I didn't know what that meant at the time, and I was too groggy and tired to care. My sister came over and held my hand and I turned my head slowly over to her barely getting the words out, “My nurse is a bitch.” Surgery or no surgery – feisty Becky was still in there! My family kissed me goodbye and said they would see me when I got to my room. What seemed like a few minutes later, someone wheeled me to a room. I got there and no one was in there…minutes passed…I think? I managed to feel around for the call button (even though my mom hadn't Cloroxed it yet) and pressed it. Some dude came in and said, “Oh, we didn't even know you were in here.” I didn't have the energy to say anything. Finally my family came in. They were talking about how they got my room mixed up or something.

My surgery was about three hours. Dr. Albany opened me up and what he found was even worse than he anticipated. The “cyst” was, as he later stated, “the size of a baby’s head.” We told him how Dr. Dick (a jerk doctor I had in Arizona) said the pressure I was feeling was “in my head” and he challenged us by saying, “no, no it was the size of your head.” While I was open on the table they did a frozen section to see if it was metastatic cancer. It came back negative, thank God. If it was positive he would have had to remove the tumor and all of the neighboring organs, which would have been the whole enchilada – uterus, ovaries, bladder, rectum, part of my colon?

Dr. Albany was completely perplexed by the consistency of what he found. He knew when he saw it that it was not a cyst and that it was some sort of tumor. He called in the pediatric surgeon to see if he knew what it was. No luck. The whole hospital was stumped. Since the frozen section did not come back positive for cancer, his goal was to get out as much of the beast as he could, without doing any permanent damage to me. I later learned the medical term for this is attempting to have a “low morbidity rate.”

They tried for over an hour to get it out and just couldn’t get it. I was opened up vertically down my abdomen from above my belly button to way down south (it is called an exploratory laparotomy). After surgery I was asking my mom (a nurse) if they had retractors in me to really open me up and she just said to stop asking those questions. They were about to prep me for a posterior approach (in addition to the front), which would have meant they would have flipped me, taken out my tailbone temporarily, and gone in my backside, when Dr. Albany said lets try one more time. It was in that moment that I think my Pop-Pop, who had just passed away a month before, was my angel in the room. Dr. Albany tried one more time and he got it. He got out what he could and closed me up. Thirty-two staples down my abdomen.

When my family finally got to my hospital room they all sat around me and my sister put something soft on my chest. It was a stuffed monkey that she named Henry. I was never much of a stuffed animal person, but this one was special. I held onto to that monkey so tight, and it did not leave my body for the next four days. He sat perfectly on my chest and was a nice little chin pillow.

When the nurse came in, I looked at the big bandage that went vertically up my stomach and started crying, asking if I had a belly button. I was also confused about how I would pee. They explained that I had a Foley, which meant they put a catheter in me while I was out and inserted a tube that then fed to a bag where my pee went. Lovely. I later learned that when my mom was saying I had no output she was referring to a lack of pee in my bag, which is BAD after surgery because it means your kidneys are not working.

The nurses came in every so often to check my vitals and listen for a pulse in my abdomen. I cannot even describe how sensitive my tummy was to the touch of the stethoscope. Every time anything touched it, I literally went through the roof with pain even though I was on a morphine drip (which my dad was worried I thought was a toy). I was still not allowed to eat because they wanted to make sure my colon was going to wake up. All I was allowed for the first day was a stick with a little sponge on the end that my mom could wet and put in my mouth. I was going on 72 hours of nothing but liquids (because I had a colonoscopy the day before surgery). And the incentive spirometer, oh the incentive spirometer. I had to breathe into it constantly to get the anesthesia out of my lungs. I would pass out and wake up to my mom holding it to my face! (Thanks, mom for the dedication because you know I wanted to throw that damn thing across the room.)

The nurses and my mom said that the best thing I could do was to get up walking. They told me the first day would be tough, but I had to work toward it. The afternoon of the surgery I worked with my mom and the nurse just to slide my legs over to the left, and dangle them off the bed. I was exhausted just after this and I did not move my own legs, they had to do it for me. They then both grabbed me from behind on both sides of my body and slowly tried to help me stand up. I was super dizzy and nauseous from the anesthesia. I barely stood up and then started panicking because I felt so sick and they said okay, okay that is enough and helped me back into bed. The nurse said I did a great job and that just standing was really impressive for the first day. You do not realize how much you use a part of your body until you are without it. I could not even clear my throat because it hurt my abdomen so much. The nurse showed me how to put a pillow on my belly when I had to cough or sneeze. After that, my cousin and one of my best friends came to visit me and I just remember talking and falling asleep mid sentence, then waking up, and then falling asleep again.

The first night was the worst. I had a 103-degree fever, which the doctors said was normal due to high trauma of the surgery. Little did I know, that a fever was also potentially indicative of an issue with my rectum. Dr. Albany had told my parents that my rectum might not be viable after surgery and we would know within the first 24 hours. Thank God they did not tell me that until later. My rectum survived. (Wahoo, you go boy!)

My mom was there with me the whole time. She never left my side while I was in the hospital and the rest of my family came to visit every day. She slept on the chair next to me and held my hand all night through the railing. I could not move at all, barely slept, and was sweating from the fever. People come in every hour or two to wake me up for vitals, blood draws, heparin shots, and I can’t even remember what else. Then at about 5:30 a.m. the doctors came in for rounds.

About seven people marched in and lined up in front of me. Two of them were residents I had already met and the rest I had never seen before. One of the residents was reading my case out loud, like on Grey's Anatomy, as the others listened. I was thinking to myself, I am not a fucking science experiment, is this really happening? Resident number two started to talk to me and I quickly put my hand up and said, “Woah, woah, woah.” Then one by one I went down the line, “Who are you? I know you. Who are you?” They each stepped up and stated their titles. When they were all done I said, “Well I’m Becky.” I needed them to know I was no science specimen. I was a 22-year-old girl named Becky.

Moments

Moments. Moments can last 1 second, 5 minutes, 1 day, 3 days, or more. Moments are those times when I get sad about what I have – a rare cancer I will be treating and managing for the rest of my life. Since being diagnosed at 22 years old and embarking on my emotional roller coaster, I have learned that moments are okay.

Moments often take me by surprise and are really unpredictable. I had a moment Wednesday night while at my friend’s house for a New Year’s party. I was with my best friends – people I grew up with – and was having a blast. I went to the bathroom, I think around 11 p.m., and was hit with a moment. I went pee, readjusted my new sparkly dress, and then looked in the mirror. Granted I had had a few drinks which we all know amplifies emotions, but I normally only have moments if I go into the night upset. I looked in the mirror, pulled up my dress and ran my hand down my ugly scar on my belly. It goes from above my belly button all the way down town – probably about 6-7 inches (32 staples worth after the first surgery). Tears began to stream down my face (and my great make up I might add) and I thought, I’m damaged goods. I wiped my tears, reapplied my red sparkly lip gloss and rejoined the group with a smile on my face. Here is what I have learned about moments over the years…

Allow them:

I used to feel ridiculous or guilty when I had moments because they are often irrational thoughts, and I know there are so many other people out there that have it worse than me. Deep down do I know that I’m not damaged goods and someone will love me even more for what I have endured and will continue to endure, and my scars make me even more special? YES, I know that. But, in that moment that is how I felt and I needed to allow it.

Feel them:

It is one thing to allow moments, but it is another thing to feel them. Feeling them means screaming, crying, hyperventilating, sitting and starting at the wall and not moving for an hour…being weak. The big ‘ol “w” word. All my life I have struggled with being weak. I always thought that weakness was a sign of weakness. What I have learned that weakness is a sign of strength. The oh, so very strong are often oh, so very weak. In those moments of weakness, we are really feeling…I mean feeling. Emotional pain so strong that it aches in every part of your body. But my yoga teacher always says, “You have to feel to heal.” This statement is so true. I have felt the hell out of what I am going through, but letting myself feel it is a still something I continue to work on. I was talking to my friend Tara one day and told her that I have a “I don’t cry in the Dana Farber building rule” (except when my tumor was back and huge I lost it) and she said, “That rule is just dumb. You need to throw that one out.” She is so right. I just always felt like I had to be so strong while there and then I could get home and let it out. Why, though? For what? So I don’t look weak or vulnerable? Dude, I have cancer – it’s ok.

Their duration can vary:

This New Year’s moment was literally just a moment, but sometimes they last a few days. When I get bad news from the doctor like having to decide on bone loss medications, or having to go on Lipitor for high cholesterol caused by the Lupron and Letrozole, moments can last longer. I once red in Kris Carr’s book, Crazy, Sexy Cancer, that she gives herself a “3 day rule” when she gets in a slump – or has moments. I have always tried to follow that rule. The first day you are just an emotional mess, the second day you are in recovery, and the third day you are just meh. Well a month or so ago my moment turned into about a week. This was when I had to decide about going on bone loss medications, and I went to a doctor who really wasn’t helping me. I disliked her so much… She basically explained I could go on bone loss medication now but there are no studies about what that does to people who ultimately have kids. I likely can’t have kids, but don’t want to close that door. She said they have no one else like me faced with the decision. What?! She said I could go on the drugs if I wanted or wait another year, if I wanted. I looked at her and said, “Look I don’t want to go on any other medicines if I don’t have to, but you are the doctor and if you think this is necessary I will.” Still, no good answer from her. She also mentioned that I would have to try the pill form of the medication first, but it could cause acid reflux. If I couldn’t tolerate it they would give me the one-time infusion. I told her I have terrible acid reflux (have a hiatal hernia) and have been on Nexium for years. She said sorry, insurance won’t cover the infusion if you don’t try the pill. BULL SHIT. With all I was dealing with you won’t just give me the damn infusion. Well guess what – she was fired.

Long story short I went to a different endocrinologist at Dana Farber who really explained everything to me and why it was such a hard decision, she also said she could write to insurance so I could bypass the pill form of the medication. WHY, THANK YOU, it will take two minutes of her day, jeez, I finally got a nice one. I also left there with a plan, I would go see a fertility specialist to run the plan by her, then I would get the infusion. All cancer patients know that plans are sacred ground. When you don’t have a plan…well it is just impossible to describe how unsettling that is. This huge tangent to say, when all this was going down my “moment” or “funk” lasted a whole week. I started beating myself up for it because it was more than three days. Then I talked to one of my friends and she said, “Becky, you gotta cut yourself some slack, you are dealing with a lot.” I guess she was right. I also always have something in the back of my mind that my Aunt once said to me when I was having a moment. She said, “I know. I know it’s terrible and you think, how did I get back here? But, it is just going to happen and it’s okay.”

I will end with a couple of my favorite quotes. For those of you that don’t know me I am a huge quote person. They are hanging all over my cube, condo and really inspire me.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

-Khalil Gibran

“Strength does not come from physical capacity. It comes from an indomitable will.”

-Mahatma Gandhi

“It doesn't take a lot of strength to hang on. It takes a lot of strength to let go.”

-J. C. Watts

“We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.”

-Eleanor Roosevelt