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
Today was emotional for me.
I don’t really have a reason for being emotional today, other than the fact that I just woke up feeling overwhelmed, stressed out and anxious without cause.
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.
I had a really good day today.
I can’t really recall whether or not I had mentioned this previously, but yesterday I wasn’t required to go into the treatment center! My levels are at a safe enough level to where I don’t require daily monitoring anymore, and that my friends, is very big news for me.
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
I’ve been having more and more anxiety lately, sometimes for no reason at all. Its like I’ll be okay one minute, then the next I’m all tears and “woe is me” but I feel like I’m losing it at times. The constant ups and downs are exhausting in all ways possible.
Decision made: radiotherapy.
So my pain (unfortunately) keeps getting worse. I’ve used more pain medicine in the last two months than I have in the last year of having cancer.
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.
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?
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.
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.
In the patient restroom located on the second floor at the Cancer Treatment Center of America (CTCA), I saw an alarming amount of dried blood on paper towels in the waste basket. The sight made me experience a wide range of emotions, from sadness to anger to relief. It makes me wonder what that patient was experiencing to make them bleed like that, and how scary that must have been. I haven’t personally had an experience like that, losing blood from anywhere (other than good ol’ reliable Aunt Flow), hence my feelings of relief that it wasn’t me.
I am disgusted, saddened and angry that you impact so many lives, every second, every minute of every day you are being introduced to someone new. “Hi, my name is Cancer, and I’m going to put your life on hold for an unspecified amount of time; So please mark your diary as ‘full for the unforeseeable future.'”
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.
I wish I knew how to describe how this feels. Each time is different, and I think that’s part of what makes this horrible. You never know how it will make you feel. They do their best to anticipate what will happen so before they ever even administer the chemo drugs they pump you full of saline, pain meds, antihistamines, antinausea meds hoping that one or all will minimize the negative effects of the chemo, but it’s never the case. You still end up feeling some odd, surreal feeling.
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.
Yesterday I decided that I wanted to have a ladies’ night out with my mom and Stacey, a night where we could dress up fancy and get dolled up to enjoy ourselves. While thinking of what we should do, I remembered that my favorite chef Scott Conant (known for his work as a judge on the Food Network show Chopped) recently moved to Scottsdale and opened up an Italian restaurant in Phoenix last month called Mora Italian. I went to their website and there was an open reservation at 8:30pm, 8/31, so I went ahead and booked it, informing my mom and Stacey to be ready to leave my house at 7:30pm. I didn’t tell them where we were going — only that they should pamper themselves and be ready to eat good food.
Sometimes you just have to take a stand for yourself. You deserve respect. You deserve to be treated like a human being — nothing less.
I talked to my oncologist today. She explained the cancer to me in a way I hadn’t heard before.
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.
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.
Here’s my video of January’s photo-a-day challenge.
I’m baaaaack. I was able to pick up my laptop from the Apple Store today, and I couldn’t be more excited! I can now get back to regular writing, which is perfect because writing more regularly is part of my new year resolutions for 2017, as well as part of my agreement to Rara helping me get my computer repaired.
It’s been about two, almost three months, since I’ve written anything of substance. I’ve made small updates to my personal journal, but not much else. As much as I want to blame this on my currently broken Macbook, I can’t put all the responsibility on that fact. That is largely the reason why I haven’t taken the time to update my WP, since typing on a laptop is much more efficient than on an iPhone. But I’ve also let other things — family, health, video games — get in the way as well. For that reason, I’ll probably write a few entries about the happenings since November and backdate them.
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!]
Man! It’s been one heck of a day, and I know the next three days will be pretty busy, too.
Last night mom and I spent time together talking and watching our favorite cooking shows (Chopped, Beat Bobby Flay & Halloween Wars). We ended up staying up until 3am before we decided we should head to bed before we got chastised by our honeys.
This morning, I was awoken by my pops at around 7am with breakfast in bed. That guy can cook, and he spoils me so much when he’s around! I love it. After my tummy was good and full, I ended up falling back asleep (probably not the best idea after eating) until almost noon when I finally decided that I needed to get up and be productive. I was sluggish from being full of noms and from being up late, but I knew I had work that I needed to get done.
This Monday our church is having a Harvest Festival for Halloween, and I decided to help out by taking pictures the night of the event as well as helping Mosha with our booth that we will be running. In preparation for the festival I also volunteered to help make the signs for the various booths. Of course, in my natural fashion, I waited until today to finish them up. I started them a few weeks ago, but I just hadn’t motivated myself enough to get back to them. So I spent the majority of my day doing that. The poster-sized marker were ginormous and kept hurting my hands, so later in the evening I recruited Mosha to help me with the last two signs. His signs are so much better than mine — he has the best script writing while I took the easy route and used stencils. Anyhow, they are all complete and ready for the festival. (I’ll be sure to post pictures from the Harvest Festival later this week.)
Around 9pm mum and I decided to head to Wal-mart to grab the ingredients I need to make the breakfast burritos for the burrito sale I helped organized for tomorrow after church. Two of my ladies from church suggested it as a fundraiser to raise funds for our conference in November, and since everyone at our church loves to each I agreed that it would be a great idea. So after morning’s service tomorrow, our burritos will be for sale to anyone who is hungry.
Anyway, mom and I got carried away in the store looking at all the things we don’t need. It didn’t help that I needed to get Andrew a birthday present — he turned three today — and I couldn’t decide on which toys to buy him. He loves TMNT, The Avengers, Spongebob, Finding Nemo…so it was hard to decide on what to get him when I really wanted to buy him all the things I saw that I knew he would love. Then, after I had decided, I found the section with the learning toys and ran across a little tablet/laptop thingy for kids aged 3-9 years old, and it teaches them to write and learn their alphabet and all that good stuff. Being the academia nerd that I am, I was definitely conflicted about whether I should put up the toys I got him and get him that instead. I decided against it, only because I figure that kids probably want fun things on their birthdays, not something that resembles schoolwork. Needless to say, he was extremely happy with the gifts we chose (as you can tell by the pictures below). Tomorrow we will surprise him with his ice cream filled cake after we get home from church. For now, it’s time for this gal to get into bed!
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.