Breathless

I stood in the store aisle

Pondering which holiday tablecloth piqued my interest the most–

Red with white snowflakes,

White with silver trees,

Or the rustic reindeer.

My hands fumbled,

Attempting to match fabric napkins

With each design.

People came and went,

Bumping into my cart,

As I still contemplated.

On one such occasion,

I managed to drop some of the tablecloths,

And bending down–

a little too quickly perhaps

My body protested the sudden movement

And pain seared throughout

Leaving me teary-eyed,

Winded,

Dizzy,

Breathless.

Today

When your reality turns out to be fantasy, mind tricks if you will, it can be an earth-shattering, scary thing.

I suspected that the fleeting shadows were figments of my imagination. Sometimes you look from the left to the right too quickly and you think you see something that in reality isn’t there at all. So I ignored them. But today, there was no ignoring you.

I heard the dishes first, early this morning. I knew Mosha wasn’t home, and it piqued my interest enough that I roused from bed and headed to the kitchen–the very empty kitchen. It’s damning because I know what I heard, but I also know what I saw, and they were two very contradicting things. I blamed lack of sleep and new medications as I meandered back to my bed.

I spent time messaging B, and in the midst of that, you appeared, walking alongside my bed, bringing me soup, chastising me for not taking care of myself. Who are you? I had never seen you before today. I didn’t have any sense of familiarity. Just as I began to sit up, you were gone, as quickly as you appeared. Yet you were so very real.

The next logical step would have been to get ahold of my oncologist, to raise the alarm to my medical team, but instead I retreated because of fear and unfamiliarity. I forced myself to sleep, a sleep from which I didn’t wake up from until late evening. Since I woke up, I’ve had a tingling sensation across my head (this is not new, but it has been a while since I’ve experienced it). I ate, plopped on the couch until now, desperately trying to distract myself from today’s happenings. Were they imagined? All evidence points to yes.

After a little prying, Mosha got it out of me, and we decided that first thing, I need to call my medical team. I’m not fearful in the sense that I feel there is a demonic presence in our home, and I don’t believe in ghosts, so that’s not it either. No, I am fairly certain that this is directly related to Lyle or the medications somehow. Best to deal with it sooner rather than later because I can’t imagine living life the way I had to live it today. It isn’t living at all.

I am: Terminally Fierce.

I suppose the next logical step in my journey was to start a video diary of my cancer experience, especially now that I am unable to write as often as I use to. I’m sure all my non-reading friends/family/strangers prefer videos as well. So here is my first video. [I promise, the other videos shouldn’t be as long as this one.]

Regaining independence, one step at a time

Well after having numerous emotional breakdowns over the past few weeks, we (My medical team, Mosha and my parents) have decided that its best for me to try to regain some independence. Relying on other people for every little thing has taken a toll on me in many ways, and while I cannot control other things, such as how I may feel physically, I can control how much help I receive from others. Don’t get me wrong, I’m not on an ego trip nor do I plan on being unwise when it comes to asking for help; I know my limits and when I need to reach out. However, constantly having someone who needs to sacrifice aspects of their life to be my caretaker has never sat well with me. In the end, it ultimately adds more stress to my life, which makes me sicker than I already am.

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Horticulture therapy

After yesterday’s emotional ups and downs, my mom and dad suggested that each day I do something positive each day, like crafting, drawing, writing, reading, etc. Today, I did just that, and decided to start getting my garden ready for planting season. I also decided that I wanted to move my hanging planters from the backyard to the front yard, where they would get more sun and add to the overall look of the house that I’m trying to achieve with all the vines and plants. Continue reading

Radiotherapy, Day One

Today was day one of radiotherapy. For those of you who don’t know, radiotherapy uses radiation, such as x-rays, gamma rays, electron beams or protons, to kill or damage cancer cells and stop them from growing/multiplying. It’s a localized treatment, so it only affects the area where they direct the radiation. Unfortunately for me, the leukemia is so widespread and near so many of my vital organs that directing the rays can get difficult. You definitely don’t want the rays to hit your kidneys or liver or other important organs.

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Something I didn’t want to hear

The worst feeling is when your doctor suggests that your parents aren’t suited to be your caregivers. Its not for lack of willingness, but because mum herself is ill, and I worry for her health. I get stressed about her well-being and feel guilty when I know she isn’t feeling well but is slaving away to make sure that I’m fed and looked after. Continue reading

Even tough people crack

Everyone has an idea of what makes them them, and for me, I have always been someone who likes to think of themselves as strong. When faced with adversity, I choose to state at it emotionless, in the face. Sure, I might be terrified, but I don’t like to show it. I feel the need to be “strong” despite however I might feel inside. But sometimes, I don’t have the energy to be strong.

Writing because I have to

I’m having a hard time finding the will to write. Sometimes I don’t feel physically able and other times its because I feel like I have changed. When I pick up my pen or laptop, I find myself unable to put anything of substance down. Nowadays, not a lot matters. The days just pass me by. I wonder when I will be on the other side of this. When will I begin to look like myself again?

A moment of emo-ness

My pain has grown so much over the last few weeks. I mostly stay at home now, doped up so I can make it through the day. I barely have any interest in anything. I don’t have an appetite most days. I feel a lump perpetually in my throat. I tend to dread going to bed. I’m almost always exhausted, but lying in bed in the dark means there isn’t anything to distract me from the pain and my overarching situation. I get angry, frustrated and exasperated easily. I’m waiting for the day when it all gets better.

Renewed vigor, for the moment

So its been apparent to me that I’ve been a little more angry than usual. I feel like it was bound to happen at some point. Although the drugs account for a large portion of my mood swings, I also have to take ownership for my lack of patience and increased resentment over the past few weeks. I mean, I’ve been pretty good at controlling my emotions regarding cancer, but as of late its been tougher to do so. But today…today I woke up with a renewed vigor. I am determined to conquer this — not just cancer in general, but all of the nasty stuff no one every sees or talks about. I won’t let it change who I am, not today, not tomorrow, not ever.

Stem Cell Transplant — Complete!

An update for everyone —

I received my stem cell transplant today. It was a rather grueling day: seven straight hours hooked up to various machines getting pumped full of different medicines and eventually, someone else’s blood. But, thankfully, it is over, and procedurally, everything went well. Now we wait to see if my body takes the donor’s cells as my own, which can take anywhere between a few weeks to a year, but hopefully we will begin to see something within a month and a half to two months. For now, I am being watched for the next 48 hours around the clock, and I have daily checkups with my cancer team until further notice.

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Plans & Pneumonia

Hello people!

It’s been a hectic few days. I worked most of Friday, and my last two appointments were for Nay Nay & Lee Lee, so after we finished they treated me to dinner at Cherry Blossom Noodle Cafe. I was looking forward to our dinner all week because I am currently obsessed with their Chicken Katsu and Potstickers. Dinner was worth the wait because the food was delicious as usual. On our way home we stopped at Zia Records, and I purchased a pack of coloring postcards (Daydreams by Hanna Karlzon), a Color-In’ Book — Retro Summer, as well as a TMNT toy for Andrew. I crashed shortly after getting home as I was tired and not feeling too great.

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I’m Angry at Lyle

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.

Physical
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.

Speech Portion
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!] 

Medical Update

I received a call from my doctor’s office this morning. They were calling to schedule some preliminary diagnostic tests to test my brain functions such as my memory, comprehension, word recall, etc. Then, depending on my results, I will be sent to specialized therapists to begin sessions. My diagnostic testing is scheduled one week from today — Thursday, 11/3 in the afternoon.

I’m also currently scheduled to start chemo again on Monday, 11/21, but I realized that that is Thanksgiving week. I would hate to be feeling crummy and having to watch everyone enjoy Thanksgiving dinner without me, so I think that I’m going to try and push back chemo to the following week. I also have a tradition of decorating my house for Christmas the day after Thanksgiving, so I think that if I can get the doctors to reschedule me, it will be for the best.

The Scars of Battle

It was a pretty lazy, uneventful day for me. I’ve been dealing with a horrible headache since Sunday. Honestly, it’s rather frustrating that no matter what I do or what remedies or medications I try, the pain doesn’t ease up. I’ve take Tylenol, ibuprofen, Excedrin, and the Vicodin I was prescribed. I’ve slept, made sure I’ve been eating regularly and healthy. I tried my essential oils, had Mosha massage my neck and head, used my head cold pack, and throughout all these things, I’ve pleaded and prayed to God. For whatever reason, I’ve not received any type of relief from the pain. As a result, I’ve been completely unproductive since Sunday.

Oddly enough, I experienced a moment of relief, not from the physical pain but a mental moment of relief, from one of the most unlikely places: a fictional world called Eorzea, the setting of my favorite game.I’ve been playing FFXIV for about two years now. It’s been such an experience, and my life has changed in so many ways since I started playing. I’ve made long-lasting friendships with other gamers through this particular game. Looking at how close I’ve become to some of them, I simply cannot imagine my life without them. They’ve gone beyond strangers behind fictional characters and become an integral part of my day-to-day life. Despite the distance between us, we are close, and they are genuine people. They care for me just as I care for them, and I’m grateful for all the times that they’ve been there for me.

This may sound silly to most, but in-game there is the ability to purchase housing. It’s something I always aspired to do, but I was never able to do so because of availability and pricing. However, today, I was able to purchase an apartment. Then the fun began: decorating.

I ended up bankrupting my character’s bank account (a little less than $2 million) in one day by purchasing and furnishing my place, but it was worth it. I’m sure you’re probably wondering what this has to do with my real life struggles, and here’s why it matters: it made me happy, happy enough to momentarily place my physical pain at the back of my mind.

I know that in the scheme of reality, this game doesn’t matter, and some would even call it a waste of time, but this game allows me to escape my daunting reality, however briefly, and experience a world where there is no cancer and wounds can be healed by others instantaneously. I’m able to spend time with my friends, create and modify my character and surroundings and partake in a mesmerizing story. So call me crazy, laugh at me, or roll your eyes, but I had a grand ol’ time today in my fictional world.

I was slightly disappointed in the size of my apartment at first (there are no size options when you purchase your place), but after I started furnishing it, it became my space, and my love for it grew. The cherry on top was when one of my previously mentioned in-game friends presented me with a housewarming gifts: an orchestrion and an armoire.


I have been wanting an Orchestrion for such a long time because there is one song that I am obsessed with called The Scars of Battle but you can only hear it in a specific dungeon. But now, with this Orchestrion, I can listen to the song whenever I want!

I tell you, it’s the little things in life that make me happy. ❤️

Just thoughts. 

I don’t feel like a good person. I wanted to open with that because once the truth is stated, there’s nothing left to hide. I could have done so much more with my life up to this point. I didn’t. I’m selfish. I always have been. Some regrets we carry until the day we die.


I feel numb…numb to reality, numb to the stagnant air of refuse discarded by society. I have brain cancer. There’s a destructive cell in my brain that is supposed to spread through my system, attacking me, killing me from the inside. 

No matter what I do, the numbness stays. Day by day, it grows. It grew as my hair disappeared. It grew as I lost weight. It grew as I clung to hope.

Sometimes it feels like I’m watching myself from a distance, like I’m watching myself die from a vantage point, a safe point lost within my insecurities and fears. There are so many questions I want to ask myself but I’m afraid if my answers might be. 

Am I afraid of dying?

Do I hate God for this?

Sometimes the numbness is apathy. Other times it’s denial. But mostly, I think it’s sadness. Sadness and fear. 

People continue to say: “Live your life!” It sounds like the right thing to say, but how do you explain to people what this burden feels like? How do I explain my bouts of random crying or sudden onset of melancholy? Already this has become “old news” for most people I know. The calls and visits dissipated already. I understand that even though my life has been halted by cancer, that doesn’t mean that my friends’ and family’s lives have stopped moving forward. I didn’t (and don’t) expect pity forever. I suppose that it’s just a bit harder to cope on the days when I don’t hear from anyone. I’m grateful for the few who still reach out. They don’t know how much means when I feel surrounded by darkness. 

At the request of my family, I have a doctor’s appointment to see my primary physician about how I feel. I’m tired of feeling the way I do, so anything that will help is welcome. I’ve been praying and reading my bible, and Pintresting all the inspirational things I can find, but I don’t feel any less of a shell of my former self. I just hope that the restless nights and unhappy days go away soon.

Learning As You Go

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.

Mortality.

I can’t sleep. It’s not one of my better moments. I keep thinking about how it is already week four into chemo and how fast time is going…It just reminds me that life is fleeting, and I feel like I’m quickly approaching this deadline of life that I’ve been handed, this death sentence, and I can’t do anything to stop it…

The Battle I Didn’t Choose

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.

Holly Marie - Small