I hate sitting in my room, in the lap of luxury. I look around and it’s like the walls are eating me, it’s like some disease and I can’t scratch it off my skin. I drag my nails over goosebumps and hate being here. I shake and cry cold and silent tears in a too big house and wish that I could just have a crawl space where the ceiling didn’t tower above me like the sky and the walls didn’t echo their emptiness. I’m not claustrophobic. I want the stagnant air to close in on me, and I want the city to burn…burn the black creeping into my room always. There’s just no lamp big enough to light the shadows and make my empty bed seem like home.
Ever had a moment when you just don’t know how you do it? How you keep going? How you made it this far? Ever looked back and cringed at all the years taken from you by depression and thought, oh god, it’s no wonder I don’t know how to function. I didn’t for so long, I’m still getting back on my feet. And that’s okay, it doesn’t make me incompetent and it doesn’t make you weak to have relearn how to live after spending so long not wanting to.
I’m an open book, but just because you’ve read my pages doesn’t mean I trust you. You can read all my passages, learn every word by heart. You’ll never understand me.
The Valentyne Manor, East Shroud, 1568
The ticking of the clock was the only sound in the parlor, save for the occasional shift of papers each time the teenage Vyne turned the page of the book she held above her face, reading sprawled out over the sofa. Her mother sat in the arm chair nearby, busy mending a busted seam in one of the girl’s gowns.
The Valentyne Manor, East Shroud, 1561
The door slowly shoved open, a pair of wide, purple eyes the color of amethyst peeking in through the crack a few ilms wide, a button nose set beneath them, and under it a pair of soft lips. Through the small opening she could only see a forearm and a hand covered in bright white scales clutching a pen, busied without writing upon a parchment spread out across the desk. Just a little more… She pushed the door open a little wider, cringing as a loud creak broke the near silence, drowning out the sound of pen scratching over paper. Had he heard? The hand suddenly halted in its writing, and there was a pause before a voice calmly answered.
Well, it has been one heck of a day. Ups and downs for sure…
I had an appointment this afternoon to do some follow-up testing. (I completed a similar set of tests at the onset of diagnosis.) The tests were extensive and focused on various brain functions. I’ll tackle each area one at a time.
The good news is that I did well physically, so I won’t be requiring physical therapy. I did have a few minor balance issues, but my team of doctors (neurologist, neuro-oncologist and radiation specialist) recommended a few exercises that I can do at home to help with my balance and vertigo episodes. They did say that I am not allowed to swim or hike and suggested that I keep my driving to a minimum if possible. If I’m feeling up to it, I should take a short walk daily, and I am allowed to continue my bike rides so long as they don’t last longer than 20 minutes in one sitting.
Memory & Attention
I apparently have a short attention span. According to the tests, I lose a lot of details and larger concepts. After around 30 minutes of focusing on something (conversation, for example) I get exhausted and get head pains. If there are a lot of things happening at one time, I get confused and lose focus. This is all a decrease in my memory and attention from where I was scoring back in July because I was always very good at focusing — not just on one thing but multiple things. I was a very efficient multitasker. I’m not anymore, and that is a very hard fact to accept.
So this was the worst part of it all. I went from very high, almost perfect scores back in early July to scoring in the high 40 percentile. The tests were eye-opening. We did reading comprehension, and I had a 50% success rate. We also did object recognition, and it was very weird to see pictures but not recognize it, yet know in the back of my head that at some point I knew what it was. It was so hard to wrap my mind around. When I had to listen to an audio portion and also read a paragraph and tell them what I read, I only had half of the details and concept. It’s totally wild that I only understand half of what I’m reading because when i read silently to myself I thought I was understanding 100% of it. I had to read aloud and while I see all the words, I don’t read all the words on the paper, and I insert words that aren’t there. It’s just weird to think that I’m not getting everything when I’m reading on my own since there is no one there to tell me what I’m missing (or adding). Ignorance is bliss.
Anyway, I have to start speech therapy to basically re-learn words and reading skills. No guarantee since the cancer is killing the brain cells that control those cells, but we have to fight on and try. Apparently there will be homework involved.
Logic, Reasoning, Math
I did well! Haha. Math. Why math? I loathe it so much. I would trade my math skills for my reading/comprehension any day. Such is life.
I think that the hardest thing to swallow today was the fact that I went into the test confident and trusting that I would do better than I did. I really focused, gave it my all and expected better results than what I got. That is what defeated me. That is what discouraged me. That is what made me breakdown and cry.
My family was very encouraging. They keep reminding me to trust God — no matter what. I will never give up, even when I want to. I won’t give up for them. They care so much, and I would never want to let them down. I will always fight for them.
That it is the worst part of all of this. When Mosha and I discussed how serious this all is and how badly my brain functions have declined in such a short amount of time, Mosha said he didn’t like to even talk about it because it gave him knots in his chest. When I called and spoke to my parents, my dad tried to tell me to be strong but his voice cracked, and then my mom got on the line, sobbing and telling me that he walked out onto their porch and was breaking down in tears. I can’t stand that they hurt, even though I know that its natural. My mom says I should be worried the day that they stop being worried and hurt over me. I know she’s right, but it doesn’t make this any easier.
Besides all this, they’ve ordered blood work (to be done at my leisure) and an EEG which is currently scheduled for 12/02. I’ll be starting new medications to hopefully manage the physical pain of the headaches better, but they informed me that it could take up to 6 weeks for it to have worked its way into my system. My team is also pushing for round two of chemo to start next week, rather than later this month, but I’m on the fence about it at the moment since I have the women’s conference on 11/18 that I want to be present for. I’ll have to talk things over with my family more and also my team for the women’s conference to see if its feasible for me to miss the conference, even though I really do not want to. I know that my health comes first though, so it’s a path I may have to take…
Well, I am exhausted, so I’m off to rest.
[A/N: Lyle is the name of my brain tumor for those of you who didn’t know. I have a habit of naming everything, and this tumor is no exception!]
Having cancer is one of those things that you improvise, sort of like playing a made up game where you’re making up the rules as you go along. Living with cancer is not one of those games that comes with a 5-page booklet full of step-by-step instructions. While there’s an industry worth billions of nothing but self-help books, it’s unlikely that any one of those books is going to fit your individual situation. No matter how much advice you get or how many self-help books you read, the bottom line is that living with cancer is a journey that you ultimately end up trekking on your own.
Yes, it definitely helps to have family and friends who can offer advice and encouragement, but no matter how much they try or care, there is still a lack of specific instructions that we (the patients) feel we need when we’re seemingly thrust into the uneven and arduous terrain of such a drastic life change. There’s so much stress, upheaval and fear that accompanies cancer, and it’s not something that anyone is ever prepared for.
This road is filled with unexpected twists and unwanted turns and setbacks, but one baby step at a time, you learn to find your way. You begin to design a new life, remembering where life has brought you, honoring what you’ve experienced and learned along the way.
Today is the start of my fourth week of chemo, and sometimes it’s still surreal that I have brain cancer. It just doesn’t seem real. In so many ways I feel the same as always, almost like nothing is different except for the fact that I get sick a lot, have lost some hair and sleep more than my cat. But there are these fleeting moments when I feel…well, normal, just like my old, healthy self, and it’s hard to believe that I’m battling an illness as big as I am.
Now, I know a lot of people who tell me not to claim cancer, which I don’t. One thing that I think others fail to realize is that it’s not easy when you have reality staring directly at you, and you’re trying to take God’s Word and His truth and place that over reality’s truth. It’s not easy. So no, I do not claim this — but that doesn’t mean that I’m naive or oblivious to the very real lecherous disease that is attacking my brain.
In the beginning of this, I had so many people praying over me and telling me that perhaps my scans were wrong or that I would go back to see another doctor and that they would say that there’s been a miraculous healing, and I genuinely believed that. It was extremely rough for me to believe with every fiber of my being that I was already healed, only to find out that the cancer was still there, and my prognosis remained the same: 2-3 years to live, maybe 5 if I’m “one of the fortunate 20-25%.”
I tried my hardest not to cry or show any kind of negative emotion regarding my illness. I felt that if I cried or was scared that it somehow meant that I was expressing unbelief in God and my healing. I didn’t realize how wrong I was. It took many talks with my honey and my parents to realize that it’s incredibly normal, even as a Christian, to have a range of emotions that bounces up and down, especially when facing such a serious, life-threatening battle.
It seems like that seems to my everyday life since the diagnosis. I bounce back and forth from feeling super-confident in God to feeling scared and fearful of the future. Last Monday was my 28th birthday, and no matter how much I tried to remain positive and just enjoy my special day, in the back of my head I kept wondering, “How many more do I have left?”
I’d love to be that one who beats the odds and ends up with an amazing testimony of healing that inspires and encourages so many others, but it’s hard when I’ve already known three Christians who believed just the way I do, and each of them has lost their battle to cancer within the last two years. That’s what I mean when I talk about reality’s truth vs. God’s truth. No matter how much I believe, nothing will change the fact that I don’t know what God has in store for me. I don’t know what He is doing with my life. I don’t know how or when this ends.
What I do know is that through it all, regardless of it all, I will love God and trust Him as much as I am possibly able to.
A/N: I decided yesterday that I need to write more. Not just more, but daily. I know that this is something that I’ve told myself to do plenty of times, and clearly, I have never stuck to those goals long-term. So what makes this day any different? Honestly, I don’t even know if I have an answer for that. I don’t know that I won’t quit someday, but at least I’m still trying. That’s the most important part.
For now, just to get into the habit of writing daily, I’ve decided to start by writing at minimum 500 words per day. Ambitious start, I know. But honestly, any writer knows that most times, once we are in the metaphorical zone, we can knock out 500 words fairly easy.
Now I don’t have any particular guidelines for myself other than the word count requirement. I didn’t want to box myself in by setting too many parameters, so I figure that my choice of topics and styles will vary depending on what is happening in life at that particular moment on that particular day. When I decided to start this, I found tons of places where prompts where offered, but I can get picky when it comes to writing, and sometimes prompts are stifling rather than liberating, and in my opinion writing is all about liberation. We (or I) write to be free of ourselves and our world. It’s an opportunity to explore other worlds, or even our own, without judgment. With all that has been going on in my day-to-day life, mental freedom is exactly what I need, so don’t expect this journey of mine to follow a particular set of rules. You’ll probably end up getting a mix of poetry, stories, rants, thoughts, and basically anything else that you can think of.
So now that that’s out of the way, onto what’s on my mind at this particular moment in time…
Introduction of a new story I’m writing. I’m currently reading Frank Peretti’s “This Present Darkness” and was inspired to start writing. It’ll be interesting to see where this ends up.
A storm was coming. Gray clouds swept across the sky, stealing light from moon and stars alike. With the clouds came the Shadows. From the frozen north they rode the wild winds, surging across the barren lands, above the tumultous sea, over the jagged peaks. A dark swarm filled with malice. At the foot of the mountains they paused; they were summoned.
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I went on a wild hunt for my collection of stamps and my embossing heat tool, which led to me pulling out all of the Christmas decorations and putting them up. I’m missing some…particularly a set of moose stuffed animals that I put out on my entertainment center. (My mom and pops gave them to me when I was younger because the girl moose’s name is Holly Moose. I forget the boy’s name, but his antlers light up.) I also can’t seem to find my fake Christmas tree, but I’m not 100% sure that I didn’t give it away at some point. I’m more of a real tree gal, and I may have sworn off using fake ones at some point. This year, we decided to have our first Christmas up at the cabin, which might feel more like Christmas since it’ll be snowing. I’ve never been to the snow with D before, so that’ll be a lot of fun. I think that I will opt for buying one of those mini trees, since we won’t even be here on Christmas. There’s also not much room for my tree with my new ginormous couches. I also need to buy a stocking for Nikki. Right now she’s the only one missing one.
After getting distracted with the Christmas decorating, I found two boxes of old letters and photographs. I started reading some of he letters (most were from my brother) and got all emotional. I miss that guy so much. Thankfully, I’ll only have to endure the rest of this year and next without him.
It wasn’t until after I read through various letters that I went back to my stamp hunt. I found my two boxes of stamps along with my embossing tool, which means it was a successful night. In the same box, I found 3 very old journals. One was a journal-journal, with thoughts. The other two were filled with various poems and prose that I wrote in middle school and high school. Some of them were cringe-worthy while reading, while others had me questioning my sanity as a child. It’s funny to see how different my style of writing is now compared to back then. I’ve made so much progress over the years. Still, I think that I’ll type them up and add them to this blog, for preservation and a good laugh. So stay tuned!
Some days are harder than others. Some days, the words flow freely from my mind through my fingertips into my computer, and other days I sit in front of the screen, a million thoughts flowing through my head, not quite making the full trip to my hands. In these latter moments, the logical part of me places a wall up, stopping the flow before it comes to full fruition. I do this instinctively, knowing that if I were to just let go, let it all come out, it wouldn’t quite make sense to the average reader. That’s where I find myself this morning.
Just before bed last night, there was…well, let’s just say, an episode of sorts, which led to an internal war of the worlds that left me in tears and utterly confused. I know where the confusion comes from, and I’m doing my best to leave it be, to not fret over it. It’s difficult though, continuing forward with the looming uncertainty of what lies ahead. Faith can be a fickle thing for us humans, constantly changing, some days strong, others seemingly nonexistent.
As much as writing is a tool, therapeutic in various ways, sometimes you just don’t know what to write. Even last night, when all my being wanted to say something, while there were tons of somethings in my head, a whole lot of nothing came out. For this specific reason, I’ve decided to begin using writing prompts in these moments when my thoughts aren’t cohesive enough to share. Here’s to better writing habits.
Your lips tasted like heaven
But you left traces of
Down my throat.
II. We loved.
When our skin brushed,
The wound on my thigh somehow rooted into
Buttresses of your veins.
It poisoned your heart and
Robbed your breath away.
III. I left.
That night when your eyes burnt
In liquor wildfire…
I could smell her perfume on our bed
And taste the vanilla on your lips
While tears seared my cheeks like a bitter blizzard.
He has shards of crystals embedded in his heart, and his rusted wounds bleed from the rose. He smells like vodka, but he talks as if he engulfs fireballs. He always brings his broken violin because he has a shredded past, entwined within his music sheets. He smiles because the mermaids once brought him down, and he cries because he has whirlpools and blizzards etched in his ribs.
He’s always on the corner of Jefferson Street, wearing tattered jeans, telling me that its “trendy.” His white stubble trails to his neck like a map to his rugged past. His hands are calloused. I know because he squeezes me tight when I give him lunch. He’s the kind of man capable of lifting the universe.
You’re not poison ivy, and you’re not crushed mimosa. You’re not a history of screw ups and let downs. You are not a choking hazard with nothing else to give. You’re not his or hers or theirs to be tugged and pulled around by their selfish and egocentric whims, and your future is certainly not on their leash. You don’t combust into flames and extinguish into ashes at the snap of their finders, so just breathe and relax. You don’t owe anyone anything, and you are definitely not their definition of damaged cassette tapes.
Tell anyone who has treated you badly to screw off because with gritted teeth and clenched fists you inhales vile smoke, and your lungs are turning black and your kidneys are reeling into cement and stones. You re in the middle of pitfalls and booby traps and all you have is wrong, wrong, wrong advice that made you cry until your bones feel hollow and your lips seal. You are just human, and your knees can be scraped and scalded. Just make sure that after your cacophonous dance with the rainstorm, you find the strength to get up and try again.
Love yourself radically and violently. Love yourself because you are the red riding hood. The wolves don’t look like wolves but like glass angels and polished halos. You’re only learning and growing in a highly unfamiliar forest.
Love yourself because wearing a polished medal will never feel as good as when your hands are shaking from all the caffeine your heart surreptitiously slipped into your fingertips. You’re scared, too scared, and paranoid of them knowing that your lungs rot and your breath stinks because you haven’t really been waking up these days.
Love yourself because you’re a raging storms, with sharp teeth — a vessel of apocalyptic mess that tries, tries, tries to sew, patch, heal yourself again.
You don’t deserve to be abused again.
In my life, writing has been an important exercise to clarify what I believe, what I see, what I care about, what my deepest values are. The process of converting a jumble of thoughts into coherent sentences makes you ask tougher questions.
— Barack Obama
New journal for the new year!
- Reese’s Puffs
- Cookie Crisp
This year has been relatively mellow compared to other years. I haven’t experienced too many exciting things like other years (for example, last year I both graduated with my Bachelor’s degree and was accepted and started law school). My highs this year were mostly simple things.
The one that comes to mind first is that I was appointed the director of our women’s ministry at church. Being appointed any leadership position anywhere is always exciting and a reason to be elated. I’m just excited to be considered a pillar and able to contribute in some way.
Another high, that isn’t a specific instance is just the fact that I’ve been able to focus a little bit more time on my hobbies, most notably playing video games (and learning how to stream my gameplay and my gaming YouTube channel — Thanks to my good friend Daniel0cean!) and my photography. Speaking of photography, I was given a new camera earlier this year, my very first DSLR, which was a big high since the quality is so much better than my old Nikon and I’m now able to purchase lenses for different occasions.
What started as a low, but ended as a high was when I found out that I needed a medical service dog, and then I receive my handsome boy, Milo. I was originally scared, nervous and unhappy about the entire situation, but now I have Milo, and he’s like my personal sidekick. He’s with me all the time, and I love the big guy. I’m already a huge animal person, but I’m especially a dog-lover, and what’s better than having your buddy with you wherever you go?
As for lows, I guess the only thing that I can think of would be illness. My life has been plagued by illness, both old and new diagnoses. But I know that despite the hardships, in the end, I will be stronger because of them.
My top three favorite animals are the honey badger, sloth and llama.
– I like to open the sun roof in my car to keep from feeling closed in.
– My roller derby name is “Rott Wilder” and I’ve dubbed my personal emblem as a zombie Rottweiler.
– My favorite colors are teal and purple, which coincidentally are the original official colors of my favorite sports team, the Arizona Coyotes.
– My all-time favorite cartoon shows are Regular Show, Archer and Daria.
– My favorite weapon is a bow, and I own two professional-grade bows.
– I never get tired of playing video games.
– I’ve dated more women than men in my life.
– My favorite places to travel to are Disney World and Disneyland.
– I am awesome at multitasking.
– I am an artist of multiple mediums: performance poetry, drawer, painting, and photographer.
– I’m obsessed with astronomy, but would never be an astronaut.
– I’m a self-proclaimed zombie extraordinaire.
– I’m a writer. I wrote my first poetry book when I was 8 years old, and my senior year of high school I wrote a full-length novel.
– I have miraculously overcome an incurable disease.
– In high school, I belonged to all the major “stereotypical” groups, including the jocks, artists, creative writers, honor students, band, goths and burnouts.
– I fly kites every chance I get. I have two kites: Timmy the Toucan & Whammy the Whale.
– I’ve read 544 books.
Ode by Arthur O’Shaughnessy
We are the music-makers,
And we are the dreamers of dreams,
Wandering by lone sea-breakers
And sitting by desolate streams;
World losers and world forsakers,
On whom the pale moon gleams:
Yet we are the movers and shakers
Of the world for ever, it seems.
With wonderful deathless ditties
We build up the world’s great cities.
And out of a fabulous story
We fashion an empire’s glory:
One man with a dream, at pleasure,
Shall go forth and conquer a crown;
And three with a new song’s measure
Can trample an empire down.
We, in the ages lying
In the buried past of the earth,
Built Nineveh with our sighing,
And Babel itself with our mirth;
And o’erthrew them with prophesying
To the old of the new world’s worth;
For each age is a dream that is dying,
Or one that is coming to birth.
I like this poem because it’s not only beautiful, but fitting on so many different levels to my life and who I am.
- Change in the House of Flies Deftones
- I’m Into You Chet Faker
- All I Need Is You Lecrae
- Summer Calvin Harris
- Do I Wanna Know? Arctic Monkeys
- Hallelujah Rufus Wainwright
- Forever Kari Jobe
- This Head I Hold Electric Guest
- Me Atmosphere
- In My Time of Dying The Be Good Tanyas
The Witching Hour
by Anne Rice
This may be my all time favorite book. Ever. I first read this book when I was 9 years old. I skimmed through it, reading bits and pieces. As I got older, I kept picking this book up and re-reading it, gleaning more and more of the information contained within the text. So many different stories, so many different characters.
This book has it all: grand plantations, townhouses, a ghost story, family secrets, family history, witches, and a mystery to solve. This novel never fails to suck me in, transport me to the streets of the Garden District and into the Mayfair Family history. I have never been to New Orleans, but I know it would feel familiar if I visited. I would recognize the places in the novel that Anne Rice describes. It wouldn’t surprise me to see a twisted old woman sitting on a screened in porch in a rocking chair and know that she was Deirdre Mayfair, or see an old Englishman standing on a street corner and know it was Aaron Lightner. Anne Rice may not know it, but I think that she may have written one of the best books in literary history with The Witching Hour. I can’t ever get enough of it, that is the basis for a damn good novel: one that you never want to end.
This novel is epic, both in length and in the story. Dr. Rowan Mayfair discovers that she is adopted several years after the death of her adoptive parents and after the death of her biological mother, a woman she never even knew existed. Rowan is an heiress to a massive fortune and a large mansion in the Garden District in New Orleans. Along with the house and fortune, Rowan inherits a massive family with a long and twisted history and a family ghost.
All of Anne Rice’s characters throughout the novel have a tendency to leap off the page and become real for the reader. I can almost hear their voices, accents and inflections in the dialogue, as if I was watching a mini-series in my head. With each re-read of this book, I enjoy it more and more. With each turn of the very last page, I feel as though I have uncovered yet another dark secret from within the novel. A sense of accomplishment comes every time I read the last few words.
Not only have I read this novel over and over again, I have also read every other novel Anne Rice has published to date. I think this book shines brighter than any of her other novels or series. Don’t misunderstand me, I loved reading her other novels, but this one has always seemed like the best of the best. One of the characters in The Witching Hour, Michael Curry, re-reads Charles Dickens’ Great Expectations over and over again because it is his favorite book and never fails to capture his imagination. I feel the same way about The Witching Hour and read it any time I need to escape from reality.
I have mixed feelings about this. I know that some things are lawful, but I don’t believe that they’re beneficial. Its hard because I used to fill my life with too much of both of these, but I guess right now in my life, I see more harm and havoc caused by drugs and alcohol than ever before. So, as of this moment, I think that the world might be better off without these things.