Monday, March 28, 2016

Since September // Maddie's Cancer Story: Chapter 1

Maddie is a film maker. I remember the first stop-action film she made with her Pokemon action figures in the late 90s. It's still pretty riveting stuff. 

I'm sure most of you are aware that Maddie, my youngest sister, was diagnosed with stage two colon cancer in September, just after she turned 25. She is currently undergoing chemotherapy and has moved home to live with my parents. 

I am going to help her share her stories here over the next few months, and maybe longer, as long as she's feeling up to it. 

I don't know how to put myself in her shoes. God knows I wouldn't have had the same grace and composure she's had if I'd been in her place. Actually, my mom said that I took the news of her diagnosis even harder than she did. But the thing that Maddie and I have in common in this situation is that we deal with tough circumstances best when we can use them to fuel our creative passions. I know someday these stories will come out in the films Maddie makes, one way or another, but for now she and I are really excited to share them here. 

Here is the first installment of Maddie's story. 

I'm not the first person to have cancer, and unfortunately, I won’t be the last. I don’t want to share my experience because I think it’s exceptionally different than others, or that I’ve had any amazing revelations during this difficult process. I simply want to shed some light and share some details about my journey. Or maybe I just need to get it off my chest. Either way, here’s my story if you care to read…

I was diagnosed with colon cancer in my 25th year, only two months after my loving boyfriend threw me the most amazing birthday party I’ve had to date. I only mention it here because I want to illustrate how quickly the rug can be pulled out from beneath you.

The beginning of my story starts on a beautiful August evening. I vaguely remember the sky being pink. I was mostly so appreciative and excited because I got the privilege to leave work an hour early, catch the metro and go see Taylor Swift perform at the Staples Center with friends; something your average 25-year-old white girl would do. The night was fantastic and makes me happy looking back on it…I got to see Ellen DeGeneres dance on stage, be with my friends (and boyfriend) singing to some catchy T Swift songs, and sneak beer to the almost 21-year-old next to me who attended the concert with her mom.

If you couldn’t tell from that tidbit, I was a little over-served. I worried myself when I found that my stool was bloody the next morning. ‘It’s just my stomach being sensitive to the hangover,’ I thought to myself. But then I had a fever, and knew it wasn’t something to take so lightly. My boss, Nancy, took on her usual motherly role and encouraged me to leave work to go to urgent care. They examined me for hemorrhoids (one of the least invasive procedures I’ve had amidst this mess) and they couldn’t see any trace. So they ordered a colonoscopy for me. Woah, I thought to myself. That’s a little drastic for someone my age. I consulted my parents and my boyfriend’s dad who is a physician, and they all agreed with me, but thought I should go through with the procedure anyway. I dreaded asking for the day off from work, but reluctantly agreed to attend a date with my gastroenterologist and a camera up my butt. Thank God I did.

During my colonoscopy, they ended up finding a mass that resembled a shrimp, and the doctor’s reaction was far from comforting. Turns out the bleeding was related to a hemorrhoid, but they stumbled upon the mass as a result. This is one of the many lucky coincidences I’ve experienced. I had a pit in my stomach the moment after he came to me with the pictures that would not subside until we knew what it was. The next day, Nancy drove me to go bowling with my coworkers to make sure I took my mind off the pending biopsy results. It was probably nothing, we all thought.

Two days I waited in agony for the call. Then, on what seemed to be a typical Wednesday afternoon around 4pm, I got a call from my gastroenterologist. My heart was pounding in my ears. I walked outside. I think I always assume the worst will happen, because I’m human and I like to prepare myself. But in the back of my mind, I really didn’t think it was going to be bad. Then I heard the words you never want to hear…“It’s cancer,” he said. And I swear it sounded like he was about to cry. Then I started to cry, hyperventilate, and pace next to the dumpsters. I only could think of asking him questions about how to proceed. By the air conditioning units of my building, amongst all the littered cigarette butts on the ground, I tried to find some privacy and gather some semblance of sanity before I returned inside. But I was a wreck. Cancer? Seriously? I couldn’t catch my breath. What the fuck just happened?

I walked through the reception area of my office in disbelief, straight into my other boss, Dan’s, office. “I just found out I have cancer,” I said to him in between breaths, completely red in the face and hysterically crying. I remember how calm he was. I’ve found that in frantic situations everyone has to take their role. I was a mess; he was my constant. He endearingly tried to come up with all of the silver linings, but it was falling on deaf ears. It was kind of like a moment in one of those movies where all you hear is a high pitched ringing noise. I didn’t know what to do. Dan instructed me to go home, but little did I know that would be the last time I was in the building as their employee. I started to digest the information and call my family, boyfriend, and some friends. I still couldn’t believe it myself as I said it.

Tuesday, March 22, 2016

Swimming, Et Cetera

I've had a lot of fantastically wild dreams lately. I lie in bed thinking about the completely batshit things I could put here if I told all the details of what's been going on while I've been asleep and awake lately. Maddie was back in the hospital for three nights last week because she got sick from sitting in the hot tub. There's mold in my parent's house for the second consecutive year. Avalon has teeth. I knocked the wind out of myself skateboarding twice in a row.

Last night I dreamt Scott and I were offered free accommodations at this outrageously cool resort that was somehow super inland, but next to a surfable coastline that I’d never known about. I was carrying a surfboard down the hill when all of a sudden I realized it wasn’t mine. It was a longboard that belonged to my dad’s best friend Kevin’s daughter Kelsey. She was in the dream too. We were hiking down a dirt trail with about seven other surf girls towards a rocky, but pristine cove with tiny waves and big caves. When I asked her if she needed the board she nodded “no” and looked at me bemusedly like I had asked her if she wanted me to cut off all of her hair. 

I turned around, surprised I hadn’t noticed the weight difference between her nine foot board and my five foot board, and hiked back up the hill. Suddenly the trail transformed into the ocean and I was swimming without the board. The water was so clear and just warm enough that I could wear my bathing suit and feel it on all of my skin, but still cool enough to be awakening and refreshing. I was able to hold my breath for so long and I thought, cockily, I always knew I had this ability; I always knew I was magic. 

I swam past a cave. I thought about how I couldn’t wait to show it to my dad, so I started swimming faster. I looked to the left, there was a huge drop-off, but I could see for so long. Staring towards the deep abyss only a few feet away from me felt scary in an invigorating way, like when you can’t help but pet a dog you’ve never met or you let the wind blow your dress wildly in the wind or when you hang your feet off of a balcony. As I swam I thought: wow, this is too good to be true and I wanted so badly to believe it was true, but I knew better. Then, as I swam towards the surface where the resort was, I felt a current pulling me down. It was just like in the movies where you think everything is going awesome and you are wishing you are one of the characters, but then suddenly there’s an approaching waterfall or a car crash or a scary lurker revealed in the plot. 

The current started pulling me faster and I struggled to swim against it to make it to the doorway of the hotel. Normally I would have panicked, but since I felt like so many things lately had prepared me to face great big challenges, I just started swimming harder until I made it back to slab rock driveway where two hotel valets were playing hacky sack obliviously. I woke up feeling excited for the day.

"Promise me you will not spend so much time treading water and trying to keep your head above the waves that you forget, truly forget, how much you have loved to swim." Tyler Knott Gregson

// p.s. my wetsuit is from Wetsuit Wearhouse. It's an amazing suit (the Roxy AG47 Performance) and the site is an awesome resource for finding every kind of wetsuit.\\

Thursday, March 10, 2016

Desert Road, Colon Tunnel

The first thing I ate today was potato chips; not a good sign. There were ants all over the kitchen so I had to wipe them out before making scrambled eggs for Avalon and I. It’s one of those days where the ground is really cold and the sky is very blue. The ocean actually looks olive and brown from all the recent wind and rain. But I want to rewind back before all of this to when it was hot and dry and Maddie was sick.

On Friday I drove up to Orange County to visit her at the hospital. Due to the weakening of her immune system from chemotherapy, she had caught a virus; maybe the Noro virus all those people got from Chipotle around the holidays. I don’t know why we always end up talking about sex when she’s at the hospital, but we do. Then a priest came in and then Maddie’s boyfriend’s mom. It was a funny order of events.

The priest came to give us communion. If I miss church all the rest of the year, I always seem to make it back there for lent, but I haven’t this year. You could blame Avalon or you could blame me, but really I’m not going to blame anyone because I’m realizing as a 30 year old that blame seems to be one of those things that is unproductive and also excessively abundant.

So the priest gave us communion and absolved us of all of our sins with his Irish accent. I tried to assess him at first to see if he seemed like the type to touch alter boys under their garments, because even though I hate that I have the tendency to do that now, I think we’d all be lying if we said we didn’t. He seemed innocent and pure, and of course, how can you really know, but he appeared to be so full of God that it was both comforting and intimidating to make eye contact with him. Maddie and I both cried as we took communion, something we’ve been doing together since our Catholic grade school days. I never feel self-conscious crying in front of a priest. And maybe it’s a conditioned response, but somehow, in the moments before and during and after I take communion, I feel God’s presence; a voice so strong and confident about things that I know it can’t be mine; a love that feels weighty and whole.

After that Scott, Avalon and I drove through the California desert, past the wind mills and outlet malls to La Quinta, near the Coachella Valley.

Avalon chased a Maltipoo named Frankie which made me actually consider getting a dog; she was so happy, she was so occupied and I was just sitting there with relaxed shoulders. We drank almond flavored tequila after she went to bed and cooked tacos like my dad’s mom Jo-Momma the second night. We swam in the cold pool and took hikes on the sand and gravel paths. The owner of the AirBnB we rented warned us that the community hadn’t totally embraced the idea of vacation rentals yet and to keep our presence obscure, but on our walks in the neighborhood, 16 couples and five babies, everyone seemed so excited and happy to see us. It was an ideal reunion of friends who I can honestly say have only grown closer since college.

Maddie got out of the hospital on Saturday and Avalon and I spent the day with her Tuesday. She only has three more chemo treatments left! Then we are going to have a huge party. My dad even bought a tunnel that’s shaped like a colon for their driveway. And now it feels there’s a light at the end of this tunnel too.

p.s. thank you all for your kind, sincere words to Maddie and to my family and I. I feel I can't properly thank you for the ways in which your support has lifted me up. Love to you all! ~Devon

Thursday, March 3, 2016

The Answer to: How Are You?


Sometimes I don’t write because I simply don’t want to feel that deeply that day. I just want to walk around my neighborhood and watch the sun set with strangers. I want to surf and pretend it’s really important that I get good waves and ride them with proper form. I want to act like what I make for dinner is a significant decision. I want to take artsy pictures of palm trees and share them on the internet.

I ran into Roberta this morning on her way home from surfing. She asked how we were doing and I said “Good!” because in most ways, Avalon and Scott and I are. I’m enjoying skateboarding. I redecorated our bedroom. The surf in February was really fun and I’m back to riding the small board I used to ride before Avalon. I’m starting to wonder if Avalon is an exceptionally good baby. She sleeps all night and takes two long naps; she says Momma and Dada and waves and claps and signs “more”; she will eat almost anything (not yogurt and not butternut squash). She had Thai food the other night and on Friday she ate mahi mahi and curry covered cauliflower like she’d been eating it her whole life. My mom and dad bragged to Kevin about it the next day. I was glad I was within earshot so I could stand there feeling proud; like I was doing something right. But, really, I know I probably deserve almost no credit for Avalon being cool; if anything, it’s something small like 20% . 

Maddie was in the hospital the last two nights and will be again tonight. She had low potassium and was dehydrated. She might have the flu. Danielle said Monday, when she was at my parent’s house to watch The Bachelor, that Maddie was sad, even though Tuesday, when I FaceTimed her, she was taking a bath and laughing with Avalon about bubbles. The chemo is terrible. The doctor said her body will be ten years older by the time she’s done. It makes things taste like metal. It makes her eyes twitch. She can’t touch or eat anything cold. She can’t eat raw fruit and vegetables. Is it like being in a concentration camp gas chamber with cable? Maybe. I hope I never know. I wish Maddie couldn’t answer that question.

All of this is to say that until Maddie is good, I’m not good. She is part of me.