ひさしぶり～
Long time no see!
Not much has been happening in my life recently and its actually a bit boring. I'm trying to get back on the road to going back to college and finishing up my degree. I'm three quarters of the way there!
A couple new things have been added to my life recently that are really helping out. I now go to physical and occupational therapy. Its been interesting to work out parts of my body that I never knew were important to my being able to walk. Never have I had such pain in my butt muscles, as I did two weeks ago. You don't realize it but your butt is a part of your leg and those muscles help with your walk. Also, I learned that the swinging of the hips that women tend to do is most often a show of weak hip muscles. Yeah, didn't know that one.
Occupational therapy is pretty easy for me and my therapists says I won't need much of it so I'll be done with it sooner than physical therapy. Since its so easy, I mainly spend the time talking about movies with my therapist Adam. We typically talk about the latest movie we have seen, which most of often than not is not the latest. movie. Adam and I have similar tastes in entertainment, so I barely notice the time go by when I work with him. The only time that sucks is when he makes me work the arm bike (a machine that feels like you're moving your arms in an above water strokes). My arms tired quickly with this machine so I don't enjoy it that much. I don't know whether I have gotten really weak or easily tired, but these workouts are helping me build my stamina. I'd do anything to quicken my recovery, but I'm not dumb and I know these things take time.
My walking on my own is growing and so is my balance. I often try to go to places without using my cane, but I still use it for long walks like at the mall or a outside plaza. I still stumble sometimes; my right foots tends to step inward sometimes and it trips me up. I try to walk a little slower when that happens so I can catch it before it happens. The one thing I still have to work on is going up and down hills. This is really important seeing as FSU is full of them and I know I won't feel completely normal until I can make this feat.Plus, my sister has a steep garage entrance. I no longer want to look ridiculous anymore running up to flatten floor of the garage before I fall in.
All of these new improvements in my life feel great. I just got to keep moving forward and soon this experience really will become just that: an experience. Although, the best part of my recovery, was my eye surgery.
After the first three surgeries, when I was finally conscious enough to be discharged from Shands Children Hospital in Gainesville, I noticed that my eyesight was not right. What had happened was simple. The brain controls the body and messing with it can also mess with other parts of the body. When they took out the tumor it affected two things: my legs and my eyes. My legs were a given, since the tumor/cancer is in the motor skills section of the brain so it is a typical symptom for my legs to be affected. My eyes however, were more because of the surgery.
It was annoying in the beginning, but since it was only my left eye at the time, I ignored it for the most part. Sadly it didn't stay in one eye. A month after being discharged, my right eye began to turn in as well. Now my eyesight became completely crossed, but I felt like I had only one eye. Even though both of them went in, my right eye went in in an angle that I could still turn my head and see straight on. My left eye was completely turned towards the right and I didn't really use it unless I was looking at my right.
This sucked.
Not only did it give my neck some strong pains from having it turned all the time, but I didn't like how I looked. It was physical reminder that something was wrong with me. I hated it. I constantly prayed to God for it to go away. It was embarrassing. Little kids always stare at me because of my bald head, but once they noticed my eyes, then they would really stare and it was hard to get their gaze away from me. I was a freak to them. I didn't care about my messed up walk, I didn't care that I'd lost my hair, but I did care about my look.
I didn't want to do anything or go anywhere.The way I looked with both eyes in was not one I wanted to show to anyone. But I couldn't hide forever. My 21st birthday was coming up and there was no way I was going to spend it in the house. We had gone to Sarasota, to the beaches and it was easy to hide my face with the sunglasses, but it was either sunglasses or glasses. I still wasn't able to walk well so I wore my glasses more. Thankfully, we didn't run into kids (they can't help but stare) and my mom's friends never looked at me weird for the way I looked. It was a start
The one thing I was nervous about was when my friends from Tallahassee came down to go to Disney with me. I didn't know what they would do. Stare? I didn't want that. I just wanted to semi-normal. If only my eyes weren't touched. I'm jealous of the people who get cancer and you wouldn't even know it if they hadn't said anything for they looked normal. Mind you, when I thought like this, I thought about the people who had it worse than me and quickly stopped thinking in that trek. But I had nothing to fear, my friends acted the same way that they always did around me and if I looked weird they didn't show it. I had a lot of fun in Disney with them and I wore an eye-patch to make my steering of my scooter easier. I felt pretty normal with them that day and I will always cherish it when I think back on this experience.
Things started becoming better after that. Three months had passed since I last saw my eye doctor and he had decided to try a recently new technique to help adults with strabismus (crossed-eyes). Botox. Botox helps freeze wherever it is injected and eye doctors were using it to freeze the muscle pulling the eyes in and letter the other muscle pull it out/straight. My doctor felt that it was time to try this out before he would consider giving me eye surgery.
It was a semi-success. My right eye in a couple of days practically became straight again! However, the left eye remained stubborn and only went out a little bit from its position of facing in. I was a bit upset, but at least I had one eye normal so I didn't feel so weird anymore and it also relaxed the strain on my neck seeing as I could look forward again. I would simply ignore my left eye's images, or close it if I couldn't. I still didn't wear my eye -patch because honestly you look more weird with it.
But this was short-lived, before leaving to Puerto Rico, I had a tooth infection and the swelling was so bad that it pushed the small amount movement that my left eye made outward back in. The right eye even went back in, but not completely like before. It seemed I wouldn't be able to go with my eyes straight. When I came back I went to my eye doctor and he agreed that the swelling must've moved in my left eye. My eye muscles are still in shock from the surgery and they are not really going back to normal. When I look to the right, my right eye tries to look, but it is pulled to the left and so my eye moves back and forth. My left would stay where it was bur make slight movement to the right. When I look to left, my right eye does the same that my left eye would do looking right, but my left eye would try looking to right instead.
My doctor determined that in the end he would have to go ahead and do the eye surgery. Funnily enough this was three months after my Botox injections and so the Botox already was worn off so this was a perfect opportunity to do the surgery.
I was excited. Finally! Finally I could have my eyes back! My happiness was dampened down a bit when he told me he would work on the left eye first. It made sense since it was the eye that I had the most trouble with since the beginning, Eye muscle surgery is simple: they move your top and bottom muscle to the side to move the eye towards the center. Working on one eye also lessen the chance of him over-shooting the placement of my eye. There was still a possibility of doing the right eye since it was a smaller adjustment than the left, but my doctor likes to wait out surgeries (three months!)
It took forever for my surgery to come. We made the appointments in September and I was set to go through with the procedure on the 27th only for it to be pushed back. My blood doesn't want to cooperate and my counts were too low, so the surgeons pushed back my date to October 4th. I didn't like it, but I knew they wouldn't do the surgery unless I lifted them up.
Its very hard raising your blood levels. There isn't any set way to do it. I just do what my mother tells me, as some of you know, Hispanics have many 'home remedies' for all sorts of things. To bring up my hemoglobin, I drink either Chlorophyll, or Malt extract. To raise my white blood cells I took four more injections of my medicine (Neupogen). To raise my platelets...I had nothing. Platelets help stop your blood flow in a cut and turn it to a scab. This out of all of my counts was extremely important for my surgery. But I had no idea on how to get it up!
As it happens, my father's cousin in New York had breast cancer two years ago and suggested a juice that she used to drink for the same reason. It had one apple, one beet, and two carrots. Thankfully my mother had a juicer, so it was easy to make, my thoughts? Not bad, but I put a lot of sugar in it cause it has no flavor. A faint carrot taste, but really no flavor.
Did it work? Not really.
The day before my surgery when they checked my blood, everything went up, besides my hemoglobin. Damn. So close. I dislike blood transfusions. They're long and boring and a waste of time (I know they're not). Hospital televisions don't have much channels that are entertaining, least of all a Christian hospital. Its full of church channels and the only good channels are: Food Network, Animal Planet and Ion. Not much. But I did the transfusion and then bid my goodbyes. Tomorrow I had a live changing surgery to go to.
Of course the operation was ridiculous early in the morning. I awoke at around five in the morning for a seven am appointment. The surgery center is about 45 minutes away from my home. I tried taking pictures of my 'before' look, but it was before sunrise and I didn't get any good ones in the car.
My nurses were really nice, but that might had to do with that I am still in the pediatric side of medicine and so those nurses pretty much have to be nice, even with rowdy patients. I remember when I got stitches to my leg when I was a kid, kicking and screaming in pain (although I don't remember pain) and I still received a lollipop for being a 'good patient'. Yeah. Right.
Right before they gave me that damn 'relax' medicine that it puts me right to sleep, I suggested to my doctor to instead of possibly doing the surgery to my right eye to give it Botox since it worked so well last time and he was going to wait three months anyway. Next thing I know, I'm being dressed in my regular clothes and in the process of being manhandled by my mother to get me out of the bed to her car. Everything is a bit of a daze from here, I just remember my mother stopping at stores and me wanting to just go home. She says that went to the bathroom at some point and I argued with her, but I don't remember that.
I slept on the couch the moment I laid my head on it. It wasn't until hours later that I took a look at my left eye. It was so swollen! Very red! I look like someone punched my eye. But there's one thing I do take note of. My eye was straight! Even though everything around it was red, I could tell that my eye was straight. The next day was proof. The swelling went down a bit and I could see my eye better. The right eye looked the same, but my left was definitely straight. I couldn't believe it. Yeah, it looked like I had a zombie eye, but my recovery was looking up! In a couple of days my right eye will go out and I would have my eyes back to normal.
Its bit weird even now three days after the surgery to look at things. Before my left eye would show an image on the right side of me crossing with the image in front of me coming from my right eye. Now depending how far away the subject is determines if I see it double or single. My dog is finally shown singular to me and things as far as an arms length reach. Anything past that is a bit double. It doesn't matter to me. Things being double cause they were next to each other is better than because they happened to show in different spots that were far apart. Its amazing to see one hand, making it easier to paint my nails. My crossed eyes never stopped me from doing something, but I have to admit things are easier to see with them straight. I don't feel half blind anymore. I have my left side peripherals back! Soon enough there will be nothing holding me back from going back to my life. My right eye will eventually fix itself or get fixed, my legs will take my weight again and gain balance and the best thing of all, the one thing that will give me back my independence:
I will drive yet again!
