Sometimes, more than others, I am weary of life. There are different reasons why I feel this way, various contributing factors, but a lot of the time people have a lot to do with it. Often, we have encounters with others that are unpleasant, and I have come to realize that even as someone who is battling terminal cancer, I am not suddenly immune from being the victim of other people’s attitude’s or problems. No matter what role you play in life, even if you are the sweetest, most giving person in the world — at some point people are going to crap on you, even when you’ve done absolutely nothing to deserve it.
Skull Valley, La Noscea, 1568
Vyne glanced up and down several times, looking between the strange terrain around her–vibrant formations of crystal and rock with senseless, clashing textures and colors assaulting her eyesight and making her cringe–back down to the map clutched in her gloved hands. She had studied and read plenty of maps, but actually following one was something entirely new. She had rarely been far from home, and even then she usually had her parents or an escort of some variety to accompany her.
For those of you who don’t already know, I vowed to take one picture a day for this entire year. I am proud to day that I have been successful in doing so! This is a few weeks overdue, but here is a video of my pictures from the first half of the year. Enjoy!
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.
I had a long overdue visit from Finchy today. She was off work, so she offered to take me to my radiotherapy appointment in the morning, then we spent the rest of the day hanging out at my place.
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.