On The Other Side

Repost of my blog on Dana Farber Cancer Institute's Insight Blog: http://blog.dana-farber.org/insight/2017/04/on-the-other-side/.

Acceptance

It’s been two weeks now since I got back from one of THE MOST AMAZING experiences of my life – my First Descents rock-climbing trip in Estes Park, Colorado. I thought I would be itching to write and have so much to get out, but the thing is, the week had such a profound impact on me that I am having trouble articulating it. I know, I know, when am I ever at a loss for words?!

Every night when I go to bed, I have been thinking about how to write about it – what I can say that will truly encapsulate the experience. Honestly, that is something I cannot do. The week was something that I shared with 13 other young adult cancer survivors and First Descents staff members that only we can understand – and only we are lucky enough to take with us on our journey through life.

While running this morning to Kelly Clarkson, of course, the word acceptance came to mind. The reason I even applied to First Descents, actually went on the trip, and was able to absorb the experience was all because of acceptance. I have worked so hard to accept what I have, and that I have cancer. A part of me always thought I had, because I am a “these are my cards” kind of person and never, ever say, “why me?” Well, yes that is part of it, but the other part is articulating it and living it. All this volunteer work I have been doing has come with me talking about my cancer and “coming out of the cancer closet.” I’ve really looked at it as – I am telling my story to help other people. When friends or my family say, well it’s helping you too; I kind of shrug it off and say “yeah, yeah.” Well, HELL YEAH it has helped me too, it just took me a little time to open my goddamn eyes to it. I sort of realized it when I was getting ready to go on my FD trip. People would ask me where I was going and I would start with, “…it’s a rock-climbing trip in Colorado and I don’t know anyone.” They would keep asking questions so then I would say, “well I’m a cancer survivor and it’s a trip for young adult cancer survivors.” The words actually rolled off my tongue pretty easily and I was, dare I say, proud to say them.

**

When I arrived at the FD camp, I had no idea what to expect. There were all these people, from all over the country and Canada (whoop whoop), and I was worried that I wouldn’t relate to them or they would be “different” than me. I have a “different” type of cancer and never had chemo…

On the surface we were all very different people, but on the inside, we were so similar and so full of love. As the week went on, it was honestly a pleasure to get to know everyone, hear their stories, and understand their lives. I truly think I am a better person for going on the trip and now having a whole new family in my life. I don’t think I would have gotten as much out of the experience had I gone sooner. I had to accept my situation before I could accept that of others. At the end of the day we are all humans living in the same world; everyone has a battle, a story, and a will to live, and when we look inside each other it is only then that we form the most beautiful connections.  

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…

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.

Being Rare

Sometimes I feel forgotten. My friend Tara wrote a blog a few weeks back that really resonated with me. She wondered how people with rare cancers felt during all the hoopla around breast cancer and the fact that it gets a whole month dedicated to it. 

For me, I am not even close to getting a month; my cancer isn't even on the map. Aggressive Angiomyxoma (AA) – not to be confused with Alcoholics Anonymous – has anywhere from 150 to 250 reported cases depending on which sources you read. When I say reported cases, I mean EVER, IN THE WORLD. Digest that. The chances of me having this are untraceable. For me, the worst things about being rare are: I will never get a month and will likely never even get dedicated research, doctors don’t know what to tell me and often turn to Google – I kid you not, and I don’t look sick so people just have no idea what I’m going through. People can also find a way to empathize with you if you have breast cancer or prostate cancer because their mother, brother’s cousin or friend has had it. But, “Oh, hey I have Aggressive Angiomyxoma, a soft tissue sarcoma,” causes someone to glaze over and give you that I-am-trying-to-be-sympathetic-but-I-don’t-know-what-the-hell-that-weird-thing-you-just-said-is-face. I don’t have a bandwagon to jump on. I have to blaze my own trail, but heck I AM a mother friggin’ trailblazer, right?! I tell my mom and dad all the time just how special I am. :) They got a rare ass gem.

I pride myself on looking fab, even when I have been balling my eyes out right before walking into work. I always say, “When in doubt, look fab.” Yes I walk into work every day with a smile on my face, but am I fighting a big ‘ol battle? Heck yes. Here is a glimpse. One morning I started sobbing because I saw little kids (one was an adorable blonde muffin with pig tails) walking into the day care across the street (and I probably can’t have kids). One morning I was hyperventilating because I am 27 and need to go on bone loss medications. One morning I was coughing to see if I felt a little more pressure in my left butt cheek because I had a weird poop that morning – so was Frank (the tumor) bigger? One morning, probably about a year ago, I finally got myself to say the words I have cancer in my head – took about two years. Would anyone know about these mornings (aside from my family who I likely called sobbing)? NOPE.

Rare on my friend, rare on…