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.
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 talked to my oncologist today. She explained the cancer to me in a way I hadn’t heard before.
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.
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!]
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.
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.
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.