Shaken, Not Stirred

Clearly I’ve not abided by my commitment to post weekly, but would like to get back to it. Another one of my rules I’m going to break – keeping a chronological order. When (if) the day comes I end up putting all these thoughts into a book, I’ll go back and sift. Until then I’ll make sure to denote if the story/thought is past or present so I don’t cause the waves of panic like I started with a facebook update today. Yes, unfortunately, the one I’m about to share is very much present.

I suppose I really shouldn’t feel like I was hit by a semi after unfortunate doctor’s visits anymore. Good visits the past two years have become an exception; not the rule. Apparently this semi was carrying two trailers, when I thought it was only the one that nailed me last August.

I’m back to my old stomping grounds in Northern California, which also means my “old” (read set two of three sets) of doctors.  I was due for a follow-up ultrasound at UCSF from the first trailer last week.  The typical lube and press uncomfortably on my neck took a standard 40 minutes. I was stoked when released without being biopsied because, as I’ve learned, biopsies mean abnormalities. Biopsies mean something is amiss. Biopsies are not my friend.

Given the breezy test, I assumed my endocrinologist appointment today would be another medicine level adjustment, fondle of the neck, and I’d be on my way. I should have picked-up that in the week in since, I’d been referred to and taken-on by a semi-retired-works-one-day-a-week-takes-on-very-few-patients-one-of-the-best-neck-surgeons-in-the-country doctors doesn’t speaking to a promising outcome. But nope, I just thought, “Wow, that will be so wonderful if we need to do something in the future.” I didn’t think the future was now.

So what did we learn today? We learned about calcification. Calcification: the reason we didn’t need to biopsy, as the lymph node showed cancer and needs to be gone.  Since I’m pretty damn close to my maximum on radiation, we get to do the good ole fashion slice and remove. As one of my friends said today, “It’s okay, you’ve been here before. You know the drill.” Looks like surgery is on the horizon. Joy.

Another friend, who is always overly concerned about my happiness in everything, asked how I was feeling. Mad? Sad? Scared? I’ve decided on shaken. The best way to describe it is as if someone took me by the shoulders, tossed me around like a ragdoll then expected me to walk normally.  It feels pretty damn close to how I felt after the 1989 earthquake – shell-shocked and wanting to speak to no one. Mute.  My insides are shaking and I’ll cover my eyes in RayBans to avoid anyone reading through my eyes to see what’s actually going on.

When does the end of “everything will be okay” ever happen?


The Aftermath – Telltale scare, brittle hair, and me minus 30 pounds

My post-surgery scar emanated a fluorescent neon sign screaming an advertisement of “I’m not normal!” While some of my courageous co-ops mustered up the nerve to ask what had happened, most avoided the elephant that was my sudden change in appearance.  Instead I’d hear the musings and speculation from third parties. In fact, there was a rumor going around the younger generations at Aptos High that I had died.  That was a fun Thanksgiving reunion to come home to.

Clearly alive, I’d been coveting a necklace made of shells that wrapped tightly around my neck to drape over the area home to my emotional baggage. I wasn’t embarrassed; I simply wanted to be a normal sophomore girl.  I didn’t want everyone take pity on me after explaining why I looked the way I did. I didn’t want to explain myself.  My change in appearance made me uncomfortable, especially when the reactions I would hear included some variation of, “Oh, I’m so sorry.” How do you respond to that? It’s just awkward for everyone involved, so I tried to avoid it.

About a month post-surgery

To top off the train-track bandages that laced my neck, I had also been whittled down to looking like a heroin-addict due to my allergic reaction to pain medicine and lack of nutrition for a week.  I cinched my pants to keep them from falling off my hips, but the excess cloth that became my saggy derriere was just embarrassing.  Luckily my fellow 5’ 10” roommate was, and still is, healthily model thin.  I borrowed her size two, small (but extra lanky) clothes for a few weeks while my body filled back out.

My hair slowly turned to long strands of straw, falling out in clumps every time I brushed or ran my fingers through it.  For those who don’t know, the thyroid regulates the metabolism.  Once it’s removed your body progressively begins to slow down including the functions that make your body, skin, hair, and nails lubricated. My face plumped and eyes bulged, while the rest of my body remained gaunt as I prepared for radioactive treatment.  I looked outright sickly.  My coach commented on my appearance in Volleyball Magazine a few months later, “Ali still showed up to practice even though she was literally turning green.”

Although I felt and looked like hell, I maintained the attitude that I’d tackle the life I was meant to lead head-on and not let this hiccup slow me down.  I was ready for my next hurdle.

This Some Bullsh*t

One year. I would just like to make it one goddamn year without having a test come back positive. I haven’t been cancer free since I was eighteen. I haven’t made it cancer free for one year the past six years. I’ve long been regarded as an optimist, finding the silver linings in my unfortunate situation. Over the past two years that optimism is waxing thin, sanded down to an opaque membrane exposing a jaded skeptic with each reading of test results.

I’ve come to expect this annual as normal, as part of who I am. Every fall I received a new adventure to figure out.  How bad will it be this year?  Potential lung mass? Liver mass? Treatment? Radiation?  Low iodine diet?  Surgery? Five day hospitalization? Isolation? Modified radial neck dissection? Nope, this year it could be an ethanol injection. Hell, who really knows?

I’m in an abusive relationship with UCLA medical facility. I love them because they find the cancer when others don’t know what’s wrong. I loathe them because they tell me they found the cancer when others don’t know what’s wrong.

Last week, the Chief of Radiology at UCLA gave my annual ultrasound. After pushing on my neck for a few moments he informed me my left side was clear. I was relieved but still felt some trepidation as he proceeded to the right.  A few moments later, “I’m sorry, but it has returned. This is an irregular node. It’s the exact same thing we found last year.”  How? How after I’ve had seventy-nine lymph nodes removed from my neck, can this be returning?

A biopsy later and I was out the door. We’re still waiting on the final report, but the biopsy shows the results are indeterminate – medical speak for “it depends.”  Indeterminate – the word no one wants to hear as they’re trying to figure out if their world is going to flip upside-down once again. Cancer is one pesky little bastard.

As my dear friend, Christine, said when I told her the news, “This some bullshit,” because, quite frankly, it is.

Party Like a Rock Star

Four days post surgery I made the all to familiar drive from Westwood to Malibu.  It’s pretty bizarre how your life can flip entirely in a matter of days. In those few weeks and years to come I became much wiser than my years, and learned lessons most don’t until much later in life. But those are tales of posts yet to come.  The only thing that was on my mind by this point was I had survived, I was free from the obligations of volleyball from a few weeks, and I had a best friend who was over 21. I did the only thing any mature 18 year old would. I partied my ass off.

It didn’t hurt that I was friends with the men’s water polo team, which as any collegiately savvy person knows is the epitome of Animal House come to life, second – of course – to frats.  As luck would have it, the guys were throwing the first annual Labor Day White party. I believe the tradition carries on to present day. At least I was still getting facebook invites after I’d graduated, but I digress.

Throw about sixty athletes whom to don’t have practice the next day in with a couple boxes of Franzia, bottles of Finlandia, and a slip-and-slide into a mud pit, and you have Labor Day 2004.

Ah yes, the mud pit. (Mom, you might want to skip over this part).  My surgeon made a fatal error in telling me “you can’t hurt the wound,” which at this time consisted of steri strips and black thread that made me look like the Bride of Frankenstein.  To me this squarely translated into “go do whatever the hell you want.”  So when people started slippin’ and sliding into the cellophane wrapped rocky terrain we called the mud pit I thought, “Hell yea!”  Surgery had given me one hell of a bikini body, the alcohol gave me the courage to shed to my suit, and simple life high (or stupidity…jury is still out on that one) gave me edge to dive. The bandages and still healing wound were doused in Escondido (name of the house) goodness.

Every night for the following week I was out at some party or bar, with my trusty girlfriends in tow.  Back then I called it a celebration or liberation from looking death in the eye and getting away with it.  However, in retrospect, I think it was my own attempt at repression, a psychology theory meaning that when traumatic events occur the human mind blocks out the memories.  I was repressing the trauma and celebrating life all at once, and to me that worked just fine.

I Will Remember You

This is for my family…

I’ll remember visiting you as a kid, riding in you White ’93 Explorer chewing Double Bubble piece after piece. I’ll remember the hot Augusts spent with Kelley, Hannah, and Jack out in the pool. I’ll remember the skits we’d put on while dancing to Britney Spears in your bedroom. I’ll remember your affinity for Wedgewood. I’ll remember you teaching me how to knit, and how I picked out the gaudiest yarn in the store. I’ll remember the 75+ hours you spent knitting my purple afghan I begged you for. I’ll remember Salvador Molly’s, and your love for their coconut rice and jerked chicken. I’ll remember the rack of lamb that ended up on your white coat at my graduation dinner. I’ll remember your and Gramma McCourt’s inappropriate comments too. I’ll remember you telling my friends and I to go to sleep at my 10-year-old birthday slumber party. I’ll remember your Christmas gifts, wrapped in gold paper and red wire bows. I’ll remember your beautiful cursive. I’ll remember your Mexican room, and trying to find stuff to put in it. I’ll remember the hot summer nights, sleeping with the widow open and hearing the breeze. I’ll remember the squirrel who’d run the wire and steal nuts from the tree. I’ll remember the yellow jackets that would find their way into the pool. I remember Hannah throwing sand to illuminate the spider webs in your backyard. I’ll remember riding our Razor scooters down Admiral. I’ll remember riding our suitcases on the iced street too. I’ll remember the merry go round at Kelly Park. I’ll remember our trips to Hollywood video. I’ll remember your “fancy” Internet TV. I’ll remember how I tried to steal your fashionable Tommy Hilfiger shirt. I’ll remember giving you that God-awful purple Tahoe oversized sleep shirt too.  I’ll remember your iced tea, your hot tea, your lemon tapioca pudding with crème – two pans, one for Dad, one for the rest of us. I’ll remember your French toast, with real maple syrup. I’ll remember your melon salad, Cornish game hens, and killer chicken salad. I’ll remember our love for all things that sparkle. I’ll remember you calling yourself part gypsy. I’ll remember your obsession with getting your new skylight in the redesigned kitchen. I’ll remember you always cursing your “horrible” hair. I’ll remember your horse shampoo. I’ll remember the giant bible in the dark hallway. I’ll remember Mabencha. I’ll remember me tapping you on the head once I surpassed your height. I’ll remember you shopping at Gap kids, fitting into the boy’s jeans.  I’ll remember calling you because Mom made me ask you what horny meant. I’ll remember Gramma Carmelita’s house, and your love for the ocean, sailing, and Tales of Balboa. I’ll remember your cackle. I’ll remember you calling me baby-doll. I’ll remember when you taught me how to tap dance, and we’d practice in the garage. I’ll remember when you were vibrant and weren’t sick. I’ll remember you forever because you’re my gramma and I love you.

Gramma passed peacefully at 7:50am this morning with my Mom, Dad and Aunt by her bedside.

I will remember you.

Gramma Tita’s Post

I apologize for the month long hiatus. Yes, I’m sure I’ve been missed since my follow-ship is all but fifteen – but an important fifteen they are. It’s been a rough few weeks. Yep, you guessed it Cancer…with a capital C.

I’ve been blessed to attend only two funerals thus far in my life.  Cancer has only touched me, and my best friend. Even so, I was still too young to consider that “knowing someone with cancer.”  Aside from that, my mom had a brain tumor when I was fourteen, but again I was still quite young to grasp any severity.  That changed this week. This week, my beloved Grandmother was diagnosed with a lung mass and cancer spread throughout her bones. She’s not expected to live much longer, but I’ll be blessed enough to pay her a final visit this week.

Unfortunately, I’m now experiencing what it’s like to be scared for someone you love.  It’s much different when it happens to you. When it’s you, you will yourself to put up the best damn fight you have in you. The only thing you’re scared for is figuring out how to put family and friends at ease. That’s what you try to control; you try to control how other people feel about you.  When it’s someone you love, it’s out of your hands.  It’s not your battle to fight.  So you spend hours wondering what’s next. Waiting for your phone call down the telephone tree.  Getting swelled with emotion at the most random of times.

I got to talk to my grandmother yesterday, Mother’s day.  Gramma grew up at the beach, and would check Tales of Balboa daily from her Portland home. Yesterday she asked me about the gorgeous fog that would sit heavy in the coastal air, and said, “I miss those diamonds of light that sparkle on top of the ocean.”

I don’t think she realized she’s been the diamond of light in ocean that is our lives. I’ll miss her. I hate cancer.

Spirituality, Surgery, & School

The good thing about having surgery immediately is it doesn’t give you a lot of time to stew in your worries. It took less than a week from the time my doctor told me I needed surgery until it was preformed. The week between was a blur.  It felt like I blinked my eyes, and when I opened them I was being rolled out of ICU.  I wasn’t scared; I wasn’t worried.  I had a calm about me because I knew I was going to be okay.  Any rational person would think this was crazy – going so quickly into surgery for cancer should have you concerned. I had no doubts in my mind that I’d be completely fine.

Call it divine intervention if you’d like. That’s how I refer to that week.  It was the first time in all my eighteen church-going years that I believed my own spirituality. Every sermon, homily, and “miracle story” I’d heard up until then had been words and doctrine.  They didn’t feel real. Sure, I considered myself a Christian, but there was this nagging feeling that although I said it, I didn’t really believe it. That week all that changed.  I felt “it” – whatever “it” may be to you.

My three-hour surgery took one and a half.  My thyroid was removed entirely, which means a lifetime of synthetic hormones to regulate my metabolism. I also had four lymph nodes involved, which meant the cancer could possibly have spread or could come back in the future.  I quickly learned I was allergic to not only general anesthesia, but also a few variants of oral narcotics. It was all morphine for me. This also meant I spent four days in hospital hell.  The morphine made my eyes rollback when I wanted to visit with my friends, nurses woke me up at all hours of the night to take my vitals, the woman who shared my room kept me awake talking to her family about her gastric-bypass surgery, I was freezing cold, and I was paranoid. My poor mother spent nights on two chairs pushed together.

In between those minor annoyances I was getting sick every hour. Yes, vomiting after having your throat slit open the day before is beyond horrifying.  I’ll spare you the rest of the unsavory details, but that was the most hellish experience my body has ever gone through.

Once released from the hospital, I recovered at the hotel across the street. After all, sophomore year was starting Monday and I needed to make an appearance as a seasoned college veteran.   My surgeon strongly suggested I take a semester off. I thought he was crazy. I had a life to live, volleyball to play, things to learn, and parties to attend.

I did the only thing I knew how to – I kept moving forward.

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