Tuesday, April 26, 2016

The Universe at 31

[press play]

The night before I turned seven years old my mom was sitting on the edge of my bed tucking me in. I remember how soft her hands were, but not the expressions on her face; her voice and how it sounded hopeful. I'm not sure if I know the moment more from her re-telling of it or because it was such an identifying instance from my childhood like who your first kiss was (although mine wasn't until college). I can still recall my room being the ideal temperature and that I was in a nightgown that felt like a hug, with even the backs of my ears feeling clean after a bath. There's all of that and then the most dominant memory of all from that moment: how I felt a lack of control in the universe. 

Trying to evoke the sense of elation and eagerness I was expected to have for the approaching festivities, that she herself probably had after planning them, my mom asked me a fairly traditional question on the eve of my birthday..."Are you excited?" I just started crying

"But Mommy, I'll never be six again!" 

Maybe I've told this story here before. In fact, I'm sure I have, but I just thought I'd bring it up because that story, just like being a sentimental six-year-almost-seven-year-old, is part of the past. If you read my sister Maddie's post the other day you know that after the doctor told her the growth in her colon was cancerous, the darkest thought she stewed upon for hours was: what if she died? Of course that's what her mind fixated on. It's what we all wondered in the weeks following her diagnosis.

With Maddie completing her twelfth and final chemo treatment five days before my birthday this year, I never thought once about being sad that I was getting older or that I'd never be 30 again. With Avalon hugging my neck and slobber-kissing my face, I just sit thinking how a real baby is all I've ever wanted. I think about this line from Marina Keegan's short life..."The middle of the universe is tonight, is here..." 

My universe is Scott and Avalon and my family and friends. It's this tiny house that might be ours for a few more years or forever. It's salty waves and sun damaged skin and fingers with tortured nail beds and too many rings that love to type truths as best they can. It's relatives that seem to revel in being happy, or sad. It's curly hair, it's passing anxieties, it's lumpy couches and big dreams that I try not to be scared of. It's a husband who I have such an all-consuming crush on. 

My universe is here, is now, is tomorrow, is not mine to control. And I just might ride the mini-ramp Scott got me every day until I'm 32 or 79. I might ride it right to the hospital. I might ride it with Avalon and whomever might come next and whomever might come into our lives after that. 

And I will be so in love with every tomorrow I have, even if sometimes I'm afraid of it.

Friday, April 22, 2016

Dear Momma, (on your birthday)


Dear Momma,

You always smell so nice, even when you aren't wearing any perfume. You *always look pretty, even when you aren't going anywhere or have worn your "uniform" to the store three days in a row. I love making fun of you because you almost always laugh the hardest. Food always tastes better at your house, even if you're making  "crap-ass" leftovers. Conversations are always more fun when you're in them. I love watching you look in the mirror when you're getting ready; you fluff your bangs with both hands and put your chin down.  I love how you love jewelry, but you are the one who makes it look good. The doctor who delivered you was right, you are a total sparkler. 

Every year I get nervous writing your cards because I feel I'm not capable of truly telling you how much I love and admire you. 

One true thing I know is: I love living life because of you (and Dad, too). You have shown me all the special things about it like how to skip and read and pack for the beach and cook and believe in things I can't see. You took me places to make friends; you showed me how to be one. You have shown me how to appreciate what I have; how to save it, organize it, clean it, treasure it, love it. You have shown me how to grow someone and help them to be their best. You have shown me how to nurture someone back to health. 

You give so much of who you are everyday, which means you have given so much to everyone around you, and you have the best laugh. I hope I can hear it forever.

Happy birthday! Thank you for making everything better.

Love,
Devie

*except when you have crazy "sailing hair!" 

Monday, April 18, 2016

Since September // Maddie's Cancer Story : Chapter 2



The night I found out the news of my diagnosis, I ruminated about everything you could imagine when you find out you have cancer. What if it has spread to my organs? Will I have to do chemotherapy? What do I do about my job, my apartment, my life in Los Angeles? How will this affect my family, my friends, my boyfriend? Then I thought about the sequence of events that led me to finding out this news. What if I didn’t go to my colonoscopy because I didn’t want to miss work? What if I didn’t have that hemorrhoid to signal the doctors to further inspect me? But the most concerning thought that I stewed upon for hours…what if I die? What if my life is taken from me and this is the moment that commences it all coming to an end? Shit, that’s dark.

I felt such a lack of control in the matter, but to assuage my morbid introspection, I did what most people would do, and tried to find romantic comedies on Netflix. I watched My Best Friend’s Wedding, cause I love me some 1990’s Julia Roberts. I finally fell asleep (thanks, Julia) and haven’t really questioned my mortality since. Maybe because I convinced myself that night that despite this horrible thing happening, I have to get through this and be OK. There's no other option.

The next few weeks were a blur. They scheduled my surgery a week and a half after my colonoscopy because they wanted to act as fast as possible. I’m going to summarize each key event briefly, because even I can’t believe the following events took place in a little over a month’s time.

Week 1

Genetic Testing

My wonderful friend Britt accompanied me to my genetic testing appointment. This was to figure out if the cancer was hereditary. I’ve had cancer in my family…in fact, my cousin had breast cancer when she was 25. Shitty coincidence, but there was no connection of mine to hers. And it turns out my cancer was not hereditary. It was a good thing, but also led me to question what actually caused this. More on that later. After the appointment, Britt and I went to Chateau Marmont to celebrity stalk, drink wine and eat fried calamari. We saw Kevin Nealon. I was trying to enjoy my last days of being a young adult in LA while I could.

CT Scan

Andy, my boyfriend, brought me to this appointment where I had to consume a disgusting banana flavored ‘smoothie’ type drink to make your organs irradiate. We found out great news with this one - it did not spread to my lymph nodes or other organs, though the stage of my cancer would need to be determined by the surgery. My gastroenterologist told me that in his opinion, it was not that far along and I wouldn’t need chemo. He guessed Stage 1.

(*If you’re curious what each stage of cancer means, here’s a better explanation than I could give.)

Week 2

Surgery

The morning of, Andy had to wipe me down with antiseptic wipes before I got dressed. I don’t remember much about the rest, because I was very liberal with my morphine (they made the mistake of giving me control of administering it (without endangering me, of course). I recall before my surgery (already high on anesthesia), I proposed to Andy, because there was probably a chapel somewhere in the hospital and we could get married really quickly before the surgery. Clearly I am very logical on anesthesia. He politely declined and delicately explained to me that, basically, we had bigger fish to fry at the moment. I also vowed that, if I had complications and died, I would will my wealth (in the amount of $5.00) to my niece, Avalon. I didn’t really think I was going to die during my procedure, but I wanted to make light of it for my family members. Sometimes I feel that, me going under the knife, or even having cancer in general, is a little scarier for them than for me. I am in my body and experience everything. I know how I feel. They are left fretting with anxiety, uncertainty, and fear for their loved one. So a joke about my death and a nod to my current financial status seemed to lighten the mood.

Luckily, my surgeon was an angel. She cared for me as if she had known me for years. She called my family every two hours or so during the surgery to give them an update. I was out cold, but I could imagine this was comforting for my loved ones waiting in angst.

My sweet friends and family visited me in the hospital. Beautiful flowers adorned my hospital room. If my thoughts seem patchy, it’s because I don’t remember a lot about this portion. Unfortunately, my most vivid memory was when they took me off the morphine and I couldn’t stop vomiting. However, the best part about the whole thing was that, to put it simply, they got all the bad stuff (tumor, two feet of my colon, a few lymph nodes) out and I was on my way to recovery.

Week 3

Recovery

My best friend from college, Kara, came out from Brooklyn to take care of me during my recovery period. She ate soft foods and didn’t drink alcohol, just like me. We walked around the backyard every evening to watch the sunset and to help my body slowly recuperate. We binge-watched Grace and Frankie on Netflix (I highly recommend it…also, I’m not getting any royalties from Netflix by promoting their content). During that week, I cried a lot about not being able to do the things I wanted to do, or eat the things I wanted to eat. Because I wanted a big fat steak and wine, dammit.

Then, a couple days later at my post-op appointment, I found out I would have to do chemotherapy. My cancer was Stage 2B, which meant that it hadn’t spread to lymph nodes or organs, but it had grown outside of the colon wall. To ensure that no cells mutated in my abdomen, they wanted to do chemotherapy as a precautionary measure. For 6 months.

More rumination.

Week 4

Quitting My Job
I decided that I needed to quit my job, move home, and focus on getting through this. Leaving my job was hard. I graduated three years ago, and have worked at the same company since I moved back to the west coast. I worked my way up from an essentially out of work freelancer, to receptionist, to staff production coordinator. I love my coworkers; they are my family. And the opportunities were remarkable. I went back a few times during my recovering period to train my replacement. Then I packed my desk into a sad little cardboard box with handles on each side, just like you see in the movies when someone gets fired.

Hormone Treatments, Egg Retrieval & Portacath Implantation

Because I was going to have to endure chemotherapy, I had to preserve my eggs because it can cause infertility or even early menopause…what a treat. Then came the awkward part…did I want to freeze embryos? Apparently it was a higher success rate if they were fertilized eggs. As in, ask my boyfriend if he wanted to freeze a potential baby with me. Luckily, Andy is a loving and amazing person, so the conversation was not uncomfortable. He told me he would be willing to do whatever I wanted. What a gem.

Shortly after, I found out that it wasn’t proven to be beneficial to freeze embryos, as opposed to just the egg. So we left it at that. No embryos. I began hormone treatments, administerinng shots into my arm every other day, for two weeks. It is identical to the prep for in vitro fertilization, if anyone reading this has experienced that before. I’m already an emotional person, so finding out I have cancer and then on top of that, to have to undergo hormone treatments…I’m sure I was a delight to be around during this time.

They were able to retrieve 25 eggs, which apparently is a lot for this type of procedure (probably because of my age). That amount of eggs can potentially yield 1-2 children (if I recall correctly). I had my eggs retrieved on a Thursday, then I got my portacath implanted Friday, the next day. A portacath is a small device just below the surface of my skin to access during chemotherapy, so the chemo drugs don’t burn my veins.

It was a lot of sedation in a 48 hour period, but since I was still recovering from surgery and two other procedures, it was a welcomed feeling. I remember crying when they gave me whatever they gave me to knock me out, because I was so happy to be feeling good again. This would unfortunately not last very long.

Week 5 

Move Out of My Apartment & Say Goodbye to My Life in LA

I figured if I was going to be doing chemo, I would need some help during that process. My parents let me move back in with them in Orange County for the duration of the treatment. I found someone to sublet my room in LA, because I hoped to return when this is over.

My friends threw a Halloween pre-party at our place the weekend I moved out (to give you perspective, it was the day after the portacath implantation). They respectfully consulted me beforehand and asked if I thought it was a good idea, and me, wanting to be normal, cool and fun, over-excitedly agreed. Unfortunately, I was still recovering from the two aforementioned procedures, and was very bloated and tired and couldn’t go out to celebrate. I felt very ugly and cried in the bathroom while my friends took shots and snapped pictures in their cute costumes. Maybe I was even a little resentful that they got to act like 20-somethings and I was thrust into adulthood.

Amongst the beer cans and alcohol rings on my coffee table, I packed up and moved out the next day. I was ready to move into my parents’, and ready to start chemo in a week. But then there was a small complication, because I guess I didn’t have enough on my plate already.

OHSS & Hospitalization
I’m 25 years old, so I am younger than your average hormone-treated patient, because like I said, it’s identical prep for in vitro fertilization, which older women typically pursue. So I reacted poorly to the treatment and got what is called Ovarian-Hyper Stimulation Syndrome. Basically my ovaries were too stimulated, and too many eggs were producing. I was so bloated that I joked that I looked like Shrek. My gut was swollen with fluids for days, which exceeded the range that my fertility doctor told me was normal. Eventually, the pain got so bad that I had to be admitted to the hospital. I ended up having to stay there for 3 days as they ran tests and tried to coordinate with my fertility doctor. My parents brought beer and wine for themselves to the hospital room each night to make light of a bad situation. We’ve managed to make some good memories amongst the bad ones. I was discharged from the hospital on a Thursday.

Week 6 
Chemo

I started chemo the following Monday.







//
Thank you everyone for all the support for Maddie and this series. I love her so much and I thank you for loving her too. 

Other stories from this series:

My first post about Maddie's diagnosis:

Thursday, April 14, 2016

Dear Sprout,



Dear Avalon,

I miss you when you’re sleeping. I’m gonna be honest, I’m totally glad you sleep well because it helps all of us be better, but I miss kissing your cheeks and the way you buzz your lips when you’re examining something new. I love the way you dance, shaking your tiny butt to Taylor Swift. I love the way you scream-laugh when I kiss your tummy or push you on the swing. I love how you’re always making noise.


I have more to do than I ever have time for in our days, but these days give me more than all the rest I’ve ever had.

Aunt Maddie and Nonny are visiting us today. Auntie Maddie told me she noticed a seashell under the heater in the hall when she was sitting on the toilet. I laughed and said I noticed it too, but neither of us picked it up. I didn’t get it because I noticed there was also dust under there and if I got the shell I would’ve had to clean that dust and all the dust that’s other places. I feel so sleepy and unproductive somedays, most days, even though I’m pretty sure I’m constantly working; working on something. But still, there’s always dust somewhere; sometimes there’s dust everywhere.


This afternoon when I tried to work on this letter while you were awake, you climbed inside of the bar stool, then tried to play the ukulele, then crawled over to me and held onto my leg, tapping it it with your palm until I stopped to play with you.

I cried last week telling Dada that I worried you liked me the most you ever would right now and that slowly, slowly you would grow away from me. I don’t know why I think this. I’ve only grown closer to my mom, your Nonny. I know she won’t ever be perfect. She pulled my hair once when I said something sassy and she wouldn’t take me to Costco once because of the way I had styled my hair, but she tries every minute to be her best for me and for those that love her, and for herself too because she respects who she is. She is the mom I’m always 
trying to be.

You get so excited when we get home. You kick your legs and sometimes squeal and it makes me happy not just that you love the home we’ve made for you, but because it means you are happy with little: me, dada, the tiny kitchen, your room that used to be a garage, that broken fireplace you’ve always had an affinity for.

When you wake up from your naps, your eyes are still in your dreams, but more happy about what’s in front of you and your hair is stuck to your face. You scratch your tummy sometimes and point at things and smile.

Isn’t it wild that I’m the keeper of these memories for you? And isn’t it crazy that some days I still wonder if I’m doing important work?

Wednesday, April 6, 2016

In Between // Spring Surf and Skate Video


This movie sort of tells the story of me trying to get back in the groove of riding water and concrete again now that I have a daughter looking on. She has made me tougher and more inspired than ever. 

♥ p.s. I want to send out a big virtual hug to you all for sending Maddie such love for her first post in her series about her cancer battle. She was on a high all week and is now working on the second installment. This community is special. Thank you for being here. 
+wetsuit by wetsuitwearhouse.com (awesome).