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

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!] 

21-Day Challenge

So my family and I have decided to do a 21-day challenge together, where we each give up something(s) and replace them with something healthier, and set a goal for what we would like to accomplish by completing this challenge. Today was our first day.
For my personal challenge, I decided to give up soda, since I know it’s unhealthy and I drink quite a bit of it. I’m hoping that this will help me to drink more water and encourage me to limit my soda intake after this challenge is over. 

I also decided to give up social media (minus my blog, since I don’t necessarily consider that “social media” as its more my personal journaling outlet). I plan on taking the time I normally spend on social media doing other things like reading or spending time with family. We are a media-driven society, and sometimes it can turn our attention from the things in life that are truly important. So I think it’ll be a good thing to take a break from it and focus on the more important things in life. 

Day one down, twenty more to go!

Manic Monday

It’s been a hectic day already, and it’s only lunchtime.
I woke up early, around 9:30am, early considering the fact that I have absolutely nothing to do today. I had two strange dreams, both dealing with church, which was new and weird. I told Mosha about them, and he also thought they were intriguingly odd.
I asked why he was awake so early when we didn’t have plans tonight, and he said he had a slight headache and couldn’t sleep anymore. I told him I was cold and was planning on going back to sleep, so he went to get in the shower. For some reason, his Aunt Nita crossed my mind, so I sent her a quick text saying “Woke up thinking of you. Love you Tia.” Within 30 seconds my phone rang, and the caller ID read “Aunt Nita.” I answered, and it was Treme, D’s cousin. She proceeded to tell me that Aunt Nita was at the hospital in the Intensive Care Unit. Apparently she went into the emergency last night because her stomach was hurting, and her appendix had to be removed. However, there was an infection inside and during the emergency surgery her blood pressure dropped significantly, and they hadn’t been able to stabilize it. I told her that Mosha was in the shower, and so we would finish getting ready to head to the hospital as soon as we could.

We just arrived to her room, and thankfully, she’s conscious. It’s weird to be back here so soon. Aunt Nita is in room 3039, right next door to room 3040, where only a few weeks ago Granddaddy, Aunt Nita’s dad, passed away. We know she needs to rest and is in pain, so we are sitting here by her side quietly. Mosha is talking to his cousin Jaylon about Jaylon’s plans for college on my left, while Aunt Rachel sits to my right, using her phone for social media with her headphones on.

I just pray that this situation ends differently than our last visit to this place did.

An email to my brother

I’m not sure if this will come through or not since my emails before were not working, but I’m praying it does.

I want to wish you a very Merry Christmas. I wish you were here with us and the family. It’s never the same without you, and I always remember the last Christmas we had together when you surprised me with a stack of presents. I miss seeing your face and being able to hug you and tease one another. I miss my brother.

Whatever you choose to do today, I want you to know that you have a sister who is thinking of you and a God who is with you, right by your side.

I love you, Brotherface.

Dia de Gracias

Today was a good day.

It started with being able to sleep in until 9am. I was still tired and sluggish from the night before (we stayed up playing Hand & Foot with the Finches until about 2am), but I knew that I had to get up and get to cooking. To my surprise, my mom had gotten up early and helped by already putting the turkey in and doing the prep work for the candied yams and stuffing. I told her to go lie down, since I’m sure she’d been up since extremely early (which she had). I then put the yams and stuffing in the oven while I made the mashed potatoes, and then after that was all done I made the ham.

By the time we finished everything (my mom woke up later and came to help finish up) it was near 2pm, our usual eating time. My pops had left to go pick up my Tio Art so he could join us, and Dev had come in from working out and getting ready. Everyone helped to set the table and get everything ready so we could get straight to the eatin’!

   
    
    
   
We ate relatively quickly, then dispersed. Myself, D, Tio Art and Pops ended up lounging on the couch watching football. Lisa showed up with Andrew, so they visited with mom. I started nodding off (as did D) so we headed to the room to take a nap. Clearly we overate ourselves into a slumber. When I woke up, D was getting ready to drive Tio Art home, and Pastor John & Mary had just come by to wish my mom a happy birthday and visit with her for a bit. I came out and started addressing my graduation invitations (YAY!), waiting until D got home so that we could go visit his side of the family.  It took him longer than I thought, so I ended up falling asleep for abuot 20 minutes on the couch (again!) until he got home then we left.

We went to see Aunt Nita and the rest of the clan, and I have to say that its nice for them to finally be accepting me and treating me like family. It wasn’t always like this, so its nice to feel their love for me and to feel like I’m part of D’s side of the family.

We got home not too long ago, and D cleaned up the kitchen while I ate (again…). I came to the living room to email my bro (only one more Thanksgiving without him, then he’s home!!). I think that mom wanted to play games (probably card games) after she’s done in the kitchen, so that’s probably what we will do next. I’m grateful to have been able to spend this day with family and to be in contact with friends throughout the day. Days like today remind me how blessed I am and how full my life is.

Progression.

I went on a wild hunt for my collection of stamps and my embossing heat tool, which led to me pulling out all of the Christmas decorations and putting them up. I’m missing some…particularly a set of moose stuffed animals that I put out on my entertainment center. (My mom and pops gave them to me when I was younger because the girl moose’s name is Holly Moose. I forget the boy’s name, but his antlers light up.) I also can’t seem to find my fake Christmas tree, but I’m not 100% sure that I didn’t give it away at some point. I’m more of a real tree gal, and I may have sworn off using fake ones at some point. This year, we decided to have our first Christmas up at the cabin, which might feel more like Christmas since it’ll be snowing. I’ve never been to the snow with D before, so that’ll be a lot of fun. I think that I will opt for buying one of those mini trees, since we won’t even be here on Christmas. There’s also not much room for my tree with my new ginormous couches. I also need to buy a stocking for Nikki. Right now she’s the only one missing one. 

  
After getting distracted with the Christmas decorating, I found two boxes of old letters and photographs. I started reading some of he letters (most were from my brother) and got all emotional. I miss that guy so much. Thankfully, I’ll only have to endure the rest of this year and next without him. 

It wasn’t until after I read through various letters that I went back to my stamp hunt. I found my two boxes of stamps along with my embossing tool, which means it was a successful night. In the same box, I found 3 very old journals. One was a journal-journal, with thoughts. The other two were filled with various poems and prose that I wrote in middle school and high school. Some of them were cringe-worthy while reading, while others had me questioning my sanity as a child. It’s funny to see how different my style of writing is now compared to back then. I’ve made so much progress over the years. Still, I think that I’ll type them up and add them to this blog, for preservation and a good laugh. So stay tuned!

Image

We decided to take a day trip to visit Pops for his birthday. I keep thinking, you never know what the next year may bring, or when someone’s last birthday will be…so best to make the most of each one.

Pops was absolutely thrilled that we came to visit. We bought him a new watch, and were able able to eat lunch and have cake. It was a great day and a memorable one for my daddy.

via https://dayone.me/2fDszVU