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.
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 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.
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.
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.
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.