Wednesday, October 26, 2016

Since September // Maddie's Cancer Story: Chapter 4

I started chemotherapy on November 9th, 2015 on the 4th floor of Kaiser Permanente’s Irvine infusion center. I remember feeling nervous, the same way I used to when a new school year started, only this time without the excitement. My mom accompanied me on my first visit. She was equipped with magazines and conversation topics to keep my mind off of what we were doing. We were escorted through the clinic past the other patients receiving treatment. Everyone looked tired and sullen…qualities I quickly adopted myself after a few treatments. We were seated at my station and I became very quiet; the reality of my situation settled in.

I received treatment every other Monday (this raised the bar for what is already considered to be the worst day of the week). My “cocktail,” as it is referred to, was called FOLFOX (Folinic acid, Fluorouracil, Oxaliplatin). I sat in the infusion center for a couple hours while the drugs dripped into my system. One of the drugs, Fluorouracil, required a “to go” pump that would attach to my chest and administer the drug for the next 3 days. It was an annoying little needle that stuck through my portacath (device implanted in my chest) and was attached to a line that connected to the pump, which dangled by my right side. I carried this device in a handmade fabric satchel with a salmon fish pattern on it. I later burned said satchel ceremonially. Then, each Wednesday, I would return to the hospital where they would flush and disconnect the pump.

This continued for six months. Though I was pretty worn out as the weeks progressed, the appointments got better with time. I was lucky enough to have a different family member or friend take me to my twelve appointments. Each “special guest” would bring something different to each appointment…whether it was a fun game, a deep discussion, or a hilarious reminiscing session, I was never disappointed. I actually have a lot of great memories from some of the appointments; we would drink hot chocolate and play Yahtzee. Plus, it was an excuse for my friend or family member to skip an hour or two of work with me, which felt special to share that time together. One friend even brought our old high school yearbooks and we laughed about the notes we wrote to each other when we were sixteen.

Though the appointments were relatively enjoyable, the days following the treatment were pretty difficult. I didn’t experience much nausea because they gave me a drug to suppress it (Zofran). However, I would have little to no energy, which I mainly attributed to frequent diarrhea. Maybe you can tell I’m not shy about sharing that information, and here’s why:

Most of my close friends and family can attest that I’ve had pretty bad diarrhea my entire life. I have irritable bowel syndrome. So because of that, coupled with losing two feet of my colon, I was told that I would have even more diarrhea than before the surgery. And as an added bonus, my chemo drugs caused diarrhea. I spent most of my days on the toilet. I shit my pants more times than I laughed. Don’t feel bad for me, I laughed a lot! But in all seriousness, the pain from it was bad but the worst part was becoming dangerously dehydrated.

To add to that, because of the drugs, drinking cold water felt like drinking shards of glass. This is not uncommon for chemo patients receiving Oxaliplatin, but it definitely didn’t help my dehydration situation. All of my water had to be heated, which was unpleasant and high maintenance.

Closer to the end of my treatment, they had to lower my dosage because my body couldn’t handle the intensity anymore. At about 3 months, I completely lost my appetite, which was especially bad since I was eliminating all of my nutrients. I remember being so weak some days that I couldn’t stand up in the shower. Some days I couldn’t even get out of bed. At one point I weighed 85 pounds. Though I was happy to finally lose the stubborn pizza and beer weight from college, it wasn’t exactly the way I wanted to lose it, nor did I want to be the size I was in 4th grade.

Aside from the shards of glass sensation and extreme weight loss, I had a few other side effects: 

  • Lowered white blood cell count which weakened my immune system. Sometimes I had to wear a mask in public or sanitize the area where I was sitting. 
  • Immediately following my treatments, my voice would get very weak, and I felt like I couldn’t breathe for a minute or so. 
  • I didn’t lose my hair because that wasn’t a side effect of the drugs in my cocktail. However, the hair on the crown of my head and my eyebrows started to thin out, and I lost my eyelashes and all other hair on my body i.e. my mustache (thanks Italian heritage). 
  • My hands turned extremely red and I lost my fingerprints. At one point, I went to get my Global Entry pass and their machine couldn’t read them. I couldn’t even use the “Touch ID” to open my iPhone. 
and restrictions:
  • No raw fruits or vegetables in case I was exposed to e. coli. This included even a lemon wedge in my water! 
  • No raw fish. Bye bye sushi, sigh. 
  • Little to no red or processed meat. Red meat is of course beef but, surprise! It’s also pork. And “processed meat” consists of any meat that is cured or salted i.e. sausage, deli meat, etc. 
  • No alcohol. My liver was already processing so many toxins from the chemo so drinking was not allowed. This blew. 
Needless to say, it was a difficult time for me. I was also hospitalized two more times. Once, I got Norovirus…that thing that was spread around the cruise ships and sickened Chipotle customers. I probably got it because of my weakened immune system and then ate something bad. The next hospitalization was from a triple infection. I had gone in the hot tub with Avalon on a warm spring day. I woke up that night feeling like I was being bit by spiders on the back of my upper thigh. The next day I had Andy inspect me and he noticed I had quarter-sized red and pus-filled cysts on my legs and butt. I also had a fever so he took me to urgent care, where I was admitted into the hospital for a skin infection. After a few tests, they discovered I also had a colon and kidney infection that I probably would not have discovered without the skin infection. I ended up staying in the hospital for 3 days.

After the third hospitalization, I was instructed to avoid public places in fear of being exposed to germs. Though all of this was hell to go through, I could mostly handle the physical trials my body had to endure. What was most troubling though, was the emotional aspect. I’ll try to begin to explain in my next chapter.

Tuesday, October 18, 2016

Dear Sprout,

Dear Sprout,

Sometimes I feel like I'm already writing you these notes from the grave. Not because motherhood leaves me feeling halfway run over (it's more skateboarding that does), but because maybe there's been one too many Hollywood movies or The Secret Life of Bees books or episodes of Full House that have left me feeling like I must write to you and tell you all I can in case something takes me before you're grown and can remember the way I looked at you. Maybe it's because my childhood best friend lost her mom, Nonny's best friend, just before you were born. I don't know, but either way this letter is: 1) Starting out sort of depressing and 2) Meant to exist so you will never doubt how much you are loved.

We've been having the most fun little breakfasts lately in our brightly lit, crumb-covered kitchen. I make eggs and toast bagels and you lick off all the cream cheese and then saturate the bread with drool. We listen to music and dance with sticky fingers. All of a sudden in the last week, instead of waving your hands to sign 'all done' you actually say "Ah dun". Your voice is like wind chimes to me. It trills on in my head after the sound has stopped. It makes me feel so happy and also a little ache in my heart because it is so sweet and so small right now. When I hear you in the morning, my heart skips a beat. You're here. You're real. I'm always the proudest I've ever been when I say "This is my daughter, Avalon".

I don't think anyone has ever wanted to be around me more than you, but I'm not complaining, it just catches me off guard.

Sometimes I find Dada's still-warm work shoes right next to the bathtub only to realize, as he's reading stories and combing your tiny hairs down the hall, that he just now took them off. He's right into it with you and he'd never complain. You are so loved little baby.


p.s. here's some of the music we've been jamming to lately, even though they're actually the most mellow tunes, just after the ones I sing you before sleep and maybe Yanni.

Friday, October 14, 2016

Another Water Story

(I took a picture of this tree the same time last year after Maddie's diagnosis)

Maddie is still working on her latest chapter of the story of her last year. I guess the both of us have been having writer’s block of some sort. But while I was just out surfing, I had this thought about how when the waves wash over me, they wash everything else away and difficulties that materialized on land suddenly seem so much less puzzling. Then it got me thinking about Avalon’s approaching baptism and just like the waves, this story built up right in front of me.

Last week Scott and I took a baptism class in a room with hard wood floors and soft, old books. There was a movie. The kind you turn to your friend and whisper about because the teacher has left and it’s more boring than even the dustiest book in the classroom and, therefore, necessary to make fun of. Although, I was the only one turning and muttering to their spouse “That’s what she said!” when the actor playing the priest said “The experience feels so invigorating.”

Afterwards, we were interviewed by a deacon who looked like that guy Old Man Sid in Big Daddy; perfectly combed white hair and beard, hopeful blue eyes, tiny glasses, button-up sweater, ironed khakis. He asked us to share our two favorite commandments and, after seventeen years of exclusive Catholic schooling, I couldn’t, for the life of me, think of any. Luckily Scott blurted out The Golden Rule before things got awkward. So the deacon went on talking about how Scott was close, but how maybe he meant Thou Shall Love Thy Neighbor as Thy Self. I was sitting there trying really hard not to choke on the Skittles I was inhaling when the deacon, repositioning his small glasses back to the bridge of his nose, slid us a card to take home. It read: How is God asking me to show His love in the world today? I didn't have any inside jokes in my head; couldn’t muster any way to refute it.

“If you wake up trying to do this, even for ten days, you will see a major difference in your life,” the deacon said.

I’ve heard similar things about anti-depressants and running and eliminating dairy from your diet. I’d been finding reasons not to look God straight in the face all night, again. After all that schooling and opening my heart to something unthinkable and “Thou Shall Honor the Sabbath!” and then the cancer diagnosis of my youngest sister, I feel a little rebellion was inevitable. Although, amongst those dusty books and that hopeful old deacon with kind eyes I knew it was time to move on from that behavior too. Life does not seem to present itself to me as a perfect little package with a requested interior. My understanding of God was inevitably going to need to evolve past: I’ll pray, be acceptably nice and have a good relationship with you and you’ll make sure no harm ever comes to my inner circle.

The very next day I made sure to compliment a new mother on her baby even though I felt shy and she seemed completely unaffected by it. I held my tongue when Scott told me, at the last minute, that he was going to be late. I noticed the hair that was growing inside of my neighbor Woody’s ears while he was talking about his broken car carburetor, but then offered to take him to his appointments the next day. I introduced myself to this kid Jack I’d been surfing with for a little while now so he’d feel welcomed and his skills as a surfer, appreciated. I complimented this grouchy man with skin like a spotted snake without any egocentric hesitations about what he’d think of me even though he absolutely ignored me with a spiteful pleasure.

And finally I got it.

The mirror reflected back, the holy water fell, the card or the higher power or the love we call God worked its magic.

I was afraid to make meaningful connections with new people because I was insecure about myself. I was thinking I couldn’t help because I needed help. And somehow, without acknowledging it, I was trying to get God to carry all of this for me because I felt too incapable of carrying it myself.

Rumi says “Where there is ruin, there is hope for treasure.” And treasures, of course, are hard to find. I don’t know why that didn’t occur to me until now, but I’m glad that didn’t keep me from looking.

p.s. thank you all for your support of Maddie and her stories. You are all amazing.

Tuesday, October 4, 2016

Since September // Maddie's Cancer Story: Chapter 3

September 27, 2016

I cried on the treadmill the other day. Actually, gleefully wept is more apt. As other LA Fitness gym patrons unwittingly walked by me, I couldn’t contain my emotions. I am sure I looked manic. But, this was the first time in over a year that I had run. This was the first time in over a year that I had a cramp in my abdomen that wasn’t a symptom of cancer. This was the first time in over a year that I had earned my sweat. Ignoring the people around me, I turned up the speed of my machine, the volume of my music, and let my tears sprinkle on the revolving rubber beneath me. I was beginning to feel like a normal person again.

September 16th, 2016 marked the one year anniversary of my colon cancer diagnosis…and what a year it has been. In my first two blog entries, I explained finding out about the cancer and enduring the couple weeks that followed. I’ve been trying to find the right way to pick up the story where I left off, but I’m having a hard time because so much has happened since then, and so much is happening right now.

Although I finished my 12th and final chemotherapy treatment in April 2016, I’ve had a hard time adjusting back to the life I once knew. I’m not even sure “adjusting back” is the correct way to describe it because really, everything is different. I’m not myself right now, and I’m not sure I ever will be again.

When most people ask me how I’m doing these days, it’s hard to answer truthfully…especially since most situations in which I’m asked this question (i.e. at a wedding, a bar, via texting) are awkward contexts for me to spill my guts. Or, I just don’t want to cry. My stock answer has been that I’ve moved back to my old apartment in LA, I’m regaining my strength and energy before I go back to work, and that I’m just taking things day by day. That’s all true. What I’m not saying is that I don’t know what the fuck I’m doing with my life, I have no self-esteem to propel me into the next phase, and I’m questioning everything I ever thought was true or right or real. That’s why I cried at the gym, because the little victories mean so much to me.

In order for me to explain why I feel this way right now, I want to share what happened to me this past year. Now that I’ve gotten my feet wet with writing again, I’ll be back in a couple days to begin to share the rest. Thanks for reading. Thanks for so much. 


Monday, September 19, 2016

Free Babes Handmade Bows Giveaway!

Today's giveaway is from Free Babes Handmade. We have a number of their bows that Avalon wears nearly every day. I love classic styles that are both durable and aesthetic, but that let her personality shine though, which is exactly how I feel the Free Babes bows function in her tiny wardrobe. 

Hillary, the owner of Free Babes Handmade, is here to share a bit about her small business, and is giving away $50 store credit too! ...

Free Babes Handmade bows are made from high quality Liberty of London prints and other cotton fabrics that compliment the colors found in nature all around us and are the perfect accessory to everyday adventure.

“Don’t ask what the world needs. Ask what makes you come alive and go do it. Because what the world needs is more people who have come alive.” - Howard Thurman

This quote inspired me in my parenting and at Free Babes Handmade. I’m passionate about raising confident, curious and independent daughters, and I hope these bows can play a part in your little one’s childhood memories. 

It’s my dream to see Free Babes bows on your little free spirits around the globe. Thanks for supporting this small business of mine.

p.s. check out Hillary's other project I'm Like Brave to talk candidly about entrepreneurship and making dreams a reality. 
Enter the giveaway below!


**US Addresses Only**
a Rafflecopter giveaway

Thursday, September 15, 2016

Home Tour (2.0)

Have you ever heard how it takes a year to paint the Golden Gate Bridge and when it's done the painters just go back to the beginning and start all over again because by then it's already fading? That's what I think it's like organizing and maintaining a home. You start cleaning out one closet, then another, then the bathroom drawers and the kitchen cabinets, updating the living room, and by the time you're done going through every last necklace and folding the throw blankets it's time to start over again because just like the bridge, and like you, your home needs constant care. 

With all the clearing out and making room we've been doing lately, I figured it was time to update the tour of our house. As we always joke when people visit and ask for a tour, "It won't take long". This is a tiny house and I'm honestly really proud of that. I remember a revelation Danielle and I had one morning after Christmas that the house I had pinned on my "Dream Homes" board on Pinterest was in fact, the guest house to her dream home. I love a good tidy, tiny space. I always have. Our house is just a version of my childhood forts, 20 years later. I'm sure things about it will change. Soon enough, I'll go back to the beginning, re-painting this bridge of a home, but this is the state of our house right now. Three people, two bathrooms, one bedroom and another that used to be a one-car garage that is now home to a toddler who loves long naps and dismantling bookshelves. 

I'm not going to pretend that I know what I'm doing when it comes to design. One thing I did that really helped me identify what I wanted was to take note of patterns I noticed over and over again in the photos I pinned on Pinterest. I've been repeatedly attracted to natural fibers, neutral colors with pops of brighter ones, open white wall space, a few sentimental things over tchotchkes and keeping nature as present as possible. Photos I started taking of the house actually helped me notice what things were making a room look unbalanced or cluttered.  

You know how when you're on vacation and you feel kind of like you could drop everything and go almost anywhere since you have basically everything you need with you? That's the feeling I wanted at home. To be unburdened from the mental weight of my belongings. Did it happen? Not totally, this is the mind of a former "pack-rat", but that's the goal. 

Another thing that I think is important to note is that I really spent almost no money with this most recent update. I just got rid of stuff or moved things around. I like how Erin Boyle, author of Simple Matters, puts it "Brainstorm, don't buy. You probably don’t need new stuff. You just need a minute to think," which actually made re-designing our space more creative and fun. I also took her tip of "slow growth" to heart. I'm still in search of a kitchen table that will fit us all, but the right one hasn't found us yet. Lastly, it helped me to think that the things I was giving away were going to have a better life being used by someone who needed them more. Then I sent them off with a hug and a whispered thank you.

+Do you have any design tips? Home renovation projects of your own? 

{For details about past renovation projects... 
or feel free to ask about anything below!}

Wednesday, September 14, 2016

Dirty Dishes, Flying Grasshopper

Tonight I left all the dirty dishes and thrown food on the counter and just went outside and skated the mini ramp. Rock-to-fakie, fakie-tailstall, backside slash, frontside slash, rock-and-roll. I also narrowly missed skating off the ramp into our dwarf palm tree. Then I laid in the grass and watched the clouds go by. I saw a grasshopper in one. He looked like he was made of chalkdust. If I hadn’t laid there I wouldn’t have known the clouds were moving or that there were little pockets of baby blue in between them. There’s something about your eyes being naked like that. No glasses, no lights, no wine, no company. I think it makes your mind clearer too. I did the dishes later with a glass of wine.

+My new favorite vegetarian taco recipe: tofu, spinach, corn, goat cheese tacos.
+Avalon's bows are from Free Babes Handmade. Giveaway coming Monday! 
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