I haven't written in a while. That's never any good. Especially for people like me that have way too much in their heads, full to the brim with thoughts, ideas, and hope.
Hope. Such a fickle thing.
It can light a fire in one's soul and squeeze the strength out of it the next. Hope is not something to mess around with. False hope is the worst. There's nothing as painful as it, because as human beings, we put so much of our faith in hope. Hope is a double-edge sword.
The world is full of people hoping and people who try to give hope. They try their best but sometimes it just doesn't work. Hope is a dream and sometimes the dreams don't come true. For if they did, than you must believe that all dreams come true and some of those dreams are quite nasty. We all have them, the dreams that wake you up in the middle of the night, gasping or even fighting to be free from the holdings of the dream. Those no one want to become true, but they are for some. The few who are going through a hellish nightmare within life know of this. This world is cruel.
But alas, there is one thing that helps us through. Something that we should never forget.
Faith.
Have faith. Don't have faith in dreams and hope, have faith in yourselves. You don't have to be religious to have faith. Its a basic thing we humans can achieve. Faith is very simple because there is really only one thing that you must always have faith in besides all else.
Yourself.
You. You are the one that is living in this world. You are the one that is going through the struggle of life. You are the one that take their faith to new heights, because you know what you are capable of and its what your believe of yourself that is going to help or harm you during times of struggle.
This may sound strange coming from me. Those that know me, know that I am not religious. However, I have always and still do, believe in God. That is as far as religious that I go. I don't need to lay my claim of my belief for everyone to see. The only one who it matters for is Him. He knows how much I believe in him. I don't need someone else to tell me what or how I should believe. People who are secure with their beliefs don't need to push themselves onto others.
I know that God made me into a strong person. I have faith in that thought and because I believe it to be true, I know that it is. My faith in myself is what keeps me from giving up. My dreams torment me and in a position like mine, it's hard not to dream. The grass is always greener on the other side, as they say and this hill is a bitch.
I try not to dream.
Dreams that fester in the mind always exceed reality and that's when hope starts to stir in your heart. Hope kills. Don't believe me? Ever wanted something so bad that when it doesn't comes it's like a knife is going through your heart and the age old question is always asked:
Why?
Why? Why do I hope and it does not happen? Why must I go through this? Why is this happening?
It's never good to ask. You won't get an answer, only a fact of life.
Life is shit and shit happens.
So, one must not ask why, they should take the shit and throw it right back in Life's face. People who believe in themselves can accomplish this. Those people who have "success'" in life and started from the very bottom of the barrel. Its not easy and it takes time, but you have to rely on yourself to make anything happen. You can hope for this or you can hope for that, but its when you believe in it, know that deep down inside you're not wishing for it. You already know that it is yours and you are going to do anything to make sure it stays that way.
That's where I find myself today. My last cycle of chemo has been delayed a week. I can't begin because the previous cycle of chemo have left my platelets in a shit state and they don't want to rise higher any time soon. So much I dreamed for has been wiped out of the picture at this stage. It was very hard to deal with the pain with knowing my hopes were to not become true.
It took me a while to be back to myself again. The sadness within me was quite strong. It felt as if the finish line was a step away, but every time I took a step forward it would retract, further and further away. Hope made think this way. Of the possibilities that come with the completion of things, but those will have to wait.
I know now that I have to stop dreaming of the end and actually believe that this is the end. Just like I'd always believed that I never had cancer after my surgery. It's out and it's not coming back. When this is done, I will wipe my hands clean of this and move on. This is what faith and belief in myself have helped to achieve.My last day of treatment will be the last of this part of my life that I have had to endure. It will shape my personality and soul a bit different, but I know that I will never go through this again. With faith and belief I fight and I will come out the victor.
I had cancer, but cancer never had me.
Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts
Monday, February 3, 2014
Tuesday, October 8, 2013
"I" Problems
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!
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!
Wednesday, August 7, 2013
Vacation
(At the time I wrote this, I was in Puerto Rico)
I cannot believe how much it has been raining today. I've been awake since 6AM and the rain started when I went to sleep. Its still raining.
I'm from Florida so this doesn't bother me much. I'm used to shitty weather, but for the fact of the matter is that I'm on vacation and this is definitely not vacation weather. Thank God, there was nothing planned for today, cause it would have been completely ruined. I just hope that the rain disappears before I head to the airport to leave. Today is my last day of vacation.
These past two weeks I have been spending my time with my family back in Puerto Rico. Ever since my surgeries I've been wanting to come and visit. The only family I have here in Florida are: my sister, my mom, and my dad. My grandparents, aunts, uncles, and cousins are all in Puerto Rico and don't plan on moving away. Even my brother is back at my grandma's place. Going through what I'm going through is pretty hard sometimes, especially when majority of your family can only show their support from afar. I wanted to see them. Needed to see them.
My aunt is the only one that had the money and time to come to Florida and see me. She and my mother tried to keep it a secret that she was coming, but my mother caved the day before my aunt arrived so I wasn't surprised, but the moment I laid eyes on her, the tears started pouring. I've been told that the surgeries have left me more emotional that I used to be. Extreme emotion of any kind brings tears to my eyes. So pretty much I cry at everything. Anything that deals with cancer on TV always makes me cry.
My aunt stayed for about a month. I was able to leave the house more, since she would drive the both of us. Thankfully, I'm good at directions so we never got lost. I also ate a lot more, because my aunt is a big girl and likes good food, but I didn't really gain much weight even though I was eating a lot more. Then the day came when she left and went back home. I was back to living on my own again.
Getting a little taste of the small freedom I would have in Puerto Rico, really fueled me to ask my doctor for the permission. I don't mind being alone, but I don't like being stuck at home with no way of getting out. I'm glad I have my dog with me, he keeps me entertained, but he's a lazy dog and mainly just goes to sleep. Being alone gives you time to think, but being 21 years old, there's not that much to think about. All I want to do is get this over with, finish school, and begin my life. Seeing as none of that is possible at the moment, thinking about it just makes me depress. I know in the end everything will work out, but its not the end and I'm not that good at being patient.
So I decided that I needed a vacation. Alone. I'm naturally an independent person so I wanted to do this on my own. Its been kinda hard having to be dependent lately. I don't like asking for help when I know I can do it on my own. I honestly can't wait for the day when I can be independent again, but I'm working on it. Plus, I have to admit, I wanted to go on my own mainly for the fact that every time I come to Puerto Rico with my mother, she always gets the attention. When she arrives, people who don't normally come by come to see my mother. I swear, its similar to if the prodigal son had return.
No. This time the attention will be solely on me. I need it more than she does.
I told her from the beginning that I was going alone. She tried to fight and laughed a bit at my reasoning, but in the end she agreed. I wanted to see my grandmother and my brother, she could see them another time.
I had already received the OK from my doctor to go on my trip. I had a tooth that was giving me trouble that he required me to get rid off before leaving. I took care of it quit. Nothing was going to hold me back. I bought my tickets and told my aunt of my imminent arrival. We had decided to not tell anyone that I was coming. This time the surprise will work.
I thought it would be a little scary being on my own again, but I loved it. My mom wheeled all the way to the gate. I had received a wheelchair, since its quite a walk from the ticketing center and the gate. Security is pretty tough at the airport, so my mother was given a guest pass in order to wheel me to my gate. This obviously placated my mom, she didn't want to let me go just yet.
Wheelchairs are the first to board, but the last to get off. I personally don't mind so much. The rush to get on and off the plane is something I don't mind avoiding. The flight to PR went well actually, barely had any turbulence. I easily get cold, so I bought the combo of a blanket and pillow. I didn't realize how weak I was until I started struggling with the package trying to open it. The man next to me was kind enough to help. Probably because he didn't want to see my struggle anymore.
We've arrived!
I was escorted in a wheelchair all the way to the luggage pick up area and then my aunt picked me up from there. I was excited. Two weeks of not having to call or go to the hospital. My vacation had started.
Everyone was extremely surprised. My grandmother stood in shock when she first laid eyes on me. She didn't even know how to hug me. I swear she would have had a heart attack, if she hadn't taken her pills. My grandmother's house is sort of a hub where a lot of my family meet. As soon as they started pouring in, I was asked the same question all the time: "What are you doing here?" and of course, "Where's your mom?" Even my brother asked the same questions when he saw me, but his question was more along the vein of being a protective big brother. He just wanted to know how I traveled on my own. He thinks I'm made of glass; little sister problems.
Bad thing about surprise visits, no one makes plans to show you around. Normally, family always drives you around to show you things that have changed and the staples that you must visit. Since no one knew, I didn't get the usual tour. The first week, I didn't really travel or visit anywhere. It wasn't until the second week that I did anything. Even then, I didn't really go anywhere. I went mainly to stores, the ones that either have different things than their American counterparts or didn't exist in America at all. I did go to Pinones, a city on the coast of the sea, that sells the best alcapurrias.
Also went to a birthday party in a place called Alberque Olimpico. Its a facility for water athletes to stay and train for the Olympics and other events. The place has three areas, one of which is a small water park where visitors can go. It's nothing like Wet n' Wild, but it has three adult slides, an area for the kids, and a wave pool. I really wanted to try going down the slides, but the rain had began to fall and didn't stop until a hour before the park closed. The drive to this place was beautiful. Puerto Rico has a lot of mountains.
I tried to get pictures of the houses built along the mountains, but I was always in a bad angle.
I also went to a timeshare like place of my cousin's friend's parents. They had invited her to chill at the place. The timeshare had a pool and was walking distance from the beach, The beach was literally in its backyard. We mostly spent our time in the pool, mainly for the fact that her eldest daughter doesn't really like going into the beach. Or water for that fact. She likes to stay on the edge, but never really go in. I was ok with that. One, I live in Florida, beaches aren't hard to find, and two, I don't like beaches that much either. Too salty.
My last day before I was to leave, was spent with one of my aunts. We went to San Juan, which always feels like I'm entering an older era. I didn't get many pictures, because it was raining. Which sucked, but also was a blessing. Typically we walk around Viejo San Juan, but the rain prevented that and I was ok with that. I don't like nor physically can walk long distances, so I avoid them if I can. We really wanted some churros though, but the carts were all closed.
All in all, I had a good trip. I did what I mainly wanted to do, which was to see my family. I even went to Loiza, where my Dad's side of the family lives. Its not too far from the city where my mom comes from. Then again, nothing in Puerto Rico is too far from another. I takes four hours to drive from Kissimmee to Tallahassee. Driving four hours non-stop in Puerto Rico is pretty much the whole outer island. You can visit all of Puerto Rico in a day. It's a small island. Very small. Sometimes you can barely see it on a map sometimes.
I plan to come back with my mother for Thanksgiving. My great grandfather is 98 years old with alzheimer and is not doing too well. My mother would like to see him one more time, before his time is up.
I got my much needed break and now it was time to return. Return to the hospitals, doctors, nurses, and chemo. The one thing that sucked during my vacation was the fact that the day after I arrive back in Orlando, I will have chemo. The one where I have to stay overnight in the hospital.
By the way, by the time I finished writing this, it stopped raining.
I cannot believe how much it has been raining today. I've been awake since 6AM and the rain started when I went to sleep. Its still raining.
I'm from Florida so this doesn't bother me much. I'm used to shitty weather, but for the fact of the matter is that I'm on vacation and this is definitely not vacation weather. Thank God, there was nothing planned for today, cause it would have been completely ruined. I just hope that the rain disappears before I head to the airport to leave. Today is my last day of vacation.
These past two weeks I have been spending my time with my family back in Puerto Rico. Ever since my surgeries I've been wanting to come and visit. The only family I have here in Florida are: my sister, my mom, and my dad. My grandparents, aunts, uncles, and cousins are all in Puerto Rico and don't plan on moving away. Even my brother is back at my grandma's place. Going through what I'm going through is pretty hard sometimes, especially when majority of your family can only show their support from afar. I wanted to see them. Needed to see them.
My aunt is the only one that had the money and time to come to Florida and see me. She and my mother tried to keep it a secret that she was coming, but my mother caved the day before my aunt arrived so I wasn't surprised, but the moment I laid eyes on her, the tears started pouring. I've been told that the surgeries have left me more emotional that I used to be. Extreme emotion of any kind brings tears to my eyes. So pretty much I cry at everything. Anything that deals with cancer on TV always makes me cry.
My aunt stayed for about a month. I was able to leave the house more, since she would drive the both of us. Thankfully, I'm good at directions so we never got lost. I also ate a lot more, because my aunt is a big girl and likes good food, but I didn't really gain much weight even though I was eating a lot more. Then the day came when she left and went back home. I was back to living on my own again.
Getting a little taste of the small freedom I would have in Puerto Rico, really fueled me to ask my doctor for the permission. I don't mind being alone, but I don't like being stuck at home with no way of getting out. I'm glad I have my dog with me, he keeps me entertained, but he's a lazy dog and mainly just goes to sleep. Being alone gives you time to think, but being 21 years old, there's not that much to think about. All I want to do is get this over with, finish school, and begin my life. Seeing as none of that is possible at the moment, thinking about it just makes me depress. I know in the end everything will work out, but its not the end and I'm not that good at being patient.
So I decided that I needed a vacation. Alone. I'm naturally an independent person so I wanted to do this on my own. Its been kinda hard having to be dependent lately. I don't like asking for help when I know I can do it on my own. I honestly can't wait for the day when I can be independent again, but I'm working on it. Plus, I have to admit, I wanted to go on my own mainly for the fact that every time I come to Puerto Rico with my mother, she always gets the attention. When she arrives, people who don't normally come by come to see my mother. I swear, its similar to if the prodigal son had return.
No. This time the attention will be solely on me. I need it more than she does.
I told her from the beginning that I was going alone. She tried to fight and laughed a bit at my reasoning, but in the end she agreed. I wanted to see my grandmother and my brother, she could see them another time.
I had already received the OK from my doctor to go on my trip. I had a tooth that was giving me trouble that he required me to get rid off before leaving. I took care of it quit. Nothing was going to hold me back. I bought my tickets and told my aunt of my imminent arrival. We had decided to not tell anyone that I was coming. This time the surprise will work.
I thought it would be a little scary being on my own again, but I loved it. My mom wheeled all the way to the gate. I had received a wheelchair, since its quite a walk from the ticketing center and the gate. Security is pretty tough at the airport, so my mother was given a guest pass in order to wheel me to my gate. This obviously placated my mom, she didn't want to let me go just yet.
Wheelchairs are the first to board, but the last to get off. I personally don't mind so much. The rush to get on and off the plane is something I don't mind avoiding. The flight to PR went well actually, barely had any turbulence. I easily get cold, so I bought the combo of a blanket and pillow. I didn't realize how weak I was until I started struggling with the package trying to open it. The man next to me was kind enough to help. Probably because he didn't want to see my struggle anymore.
We've arrived!
I was escorted in a wheelchair all the way to the luggage pick up area and then my aunt picked me up from there. I was excited. Two weeks of not having to call or go to the hospital. My vacation had started.
Everyone was extremely surprised. My grandmother stood in shock when she first laid eyes on me. She didn't even know how to hug me. I swear she would have had a heart attack, if she hadn't taken her pills. My grandmother's house is sort of a hub where a lot of my family meet. As soon as they started pouring in, I was asked the same question all the time: "What are you doing here?" and of course, "Where's your mom?" Even my brother asked the same questions when he saw me, but his question was more along the vein of being a protective big brother. He just wanted to know how I traveled on my own. He thinks I'm made of glass; little sister problems.
Bad thing about surprise visits, no one makes plans to show you around. Normally, family always drives you around to show you things that have changed and the staples that you must visit. Since no one knew, I didn't get the usual tour. The first week, I didn't really travel or visit anywhere. It wasn't until the second week that I did anything. Even then, I didn't really go anywhere. I went mainly to stores, the ones that either have different things than their American counterparts or didn't exist in America at all. I did go to Pinones, a city on the coast of the sea, that sells the best alcapurrias.
Also went to a birthday party in a place called Alberque Olimpico. Its a facility for water athletes to stay and train for the Olympics and other events. The place has three areas, one of which is a small water park where visitors can go. It's nothing like Wet n' Wild, but it has three adult slides, an area for the kids, and a wave pool. I really wanted to try going down the slides, but the rain had began to fall and didn't stop until a hour before the park closed. The drive to this place was beautiful. Puerto Rico has a lot of mountains.
I tried to get pictures of the houses built along the mountains, but I was always in a bad angle.
I also went to a timeshare like place of my cousin's friend's parents. They had invited her to chill at the place. The timeshare had a pool and was walking distance from the beach, The beach was literally in its backyard. We mostly spent our time in the pool, mainly for the fact that her eldest daughter doesn't really like going into the beach. Or water for that fact. She likes to stay on the edge, but never really go in. I was ok with that. One, I live in Florida, beaches aren't hard to find, and two, I don't like beaches that much either. Too salty.
My last day before I was to leave, was spent with one of my aunts. We went to San Juan, which always feels like I'm entering an older era. I didn't get many pictures, because it was raining. Which sucked, but also was a blessing. Typically we walk around Viejo San Juan, but the rain prevented that and I was ok with that. I don't like nor physically can walk long distances, so I avoid them if I can. We really wanted some churros though, but the carts were all closed.
All in all, I had a good trip. I did what I mainly wanted to do, which was to see my family. I even went to Loiza, where my Dad's side of the family lives. Its not too far from the city where my mom comes from. Then again, nothing in Puerto Rico is too far from another. I takes four hours to drive from Kissimmee to Tallahassee. Driving four hours non-stop in Puerto Rico is pretty much the whole outer island. You can visit all of Puerto Rico in a day. It's a small island. Very small. Sometimes you can barely see it on a map sometimes.
I plan to come back with my mother for Thanksgiving. My great grandfather is 98 years old with alzheimer and is not doing too well. My mother would like to see him one more time, before his time is up.
I got my much needed break and now it was time to return. Return to the hospitals, doctors, nurses, and chemo. The one thing that sucked during my vacation was the fact that the day after I arrive back in Orlando, I will have chemo. The one where I have to stay overnight in the hospital.
By the way, by the time I finished writing this, it stopped raining.
Wednesday, July 10, 2013
First Day of Chemotherapy
I'm sure you have heard cancer stories before. Cancer is not easy. There's talk of how strong chemo is and how sometimes it can just wipe out a person. Having gone through radiation, I was expecting the same ordeal. A lot of sleeping was to be in my near future.
My first day of chemo began in the usual clinic. I come here for basically everything. Before taking the chemo, they have to make sure that my blood counts are all right. I don't see why. I had been told that chemo typically brings it down, so making sure they are up seems kind of redundant. (If I'm even using that word right.) Although, I'm not a doctor or know anything about the body, so I'm gonna put my trust in the people that should know what they're doing.
Once I was cleared, I was sent off to the main hospital. The fifth floor is where the patients of my clinic go to for anything and especially for chemos that required us to stay overnight in the hospital. I was wheeled into my room because I still have trouble with long distances and the main hospital is on the complete other side of the cancer institute. For this first one, I was brought in with my dad, since he drove me to my appointment. I got settled and they put me on my IV. Now, the reason why I was staying at the hospital was because the chemo I was taking was the first in its cycle. The beginning of each of my cycles begins with a chemo that last six hours through IV. The first chemo is always the roughest.
Chemotherapys have different side effects as do all medicine, but depending on the side effects determined how strong a chemo was. While taking radiation I took 4 weeks of a chemo called Vincristine at the same time. It's a quick chemo that only takes a minute to go through my IV. This chemo is not that strong, but the I did have one of the side effects, which is constipation. It fucking sucked. Like so much. I've never felt such stomach pain and pain in the stomach is the worst. At one point while I was in the hospital for it, I had to take morphine in order to handle the pain. But as long as you keep your colon in check then its a pretty harmless chemo.
The chemo I was preparing to take is not like that at all. Before taking it, I have to have an audiogram. A test that checks your hearing ability to determine where it is because this chemo can affect my hearing.Cisplatin, the chemo I was to take, can also messed up my kidneys with the amount of platinum it has. Another reason that I have to stay in the hospital is because it can give me delayed vomiting which is bad because the problem is that they could discharge me to my house, I end up vomiting, and I also end up dehydrating myself and go back to the hospital again.
Clearly I had cause for concern.
It didn't help that they had to hydrate me any time that I wasn't taking a medication or the chemo. Which is really annoying because it's a lot of peeing. The reason why this sucked was not the fact that I went every 20 minutes and could never get comfortable, no, it was the simple annoying fact that you have to bring the stupid IV pump with you since you were connected to it and those things are hard to navigate when you have no strength. I would always forget to plug it back it and it would set off an annoying alarm. This is only relaxed when I'm taking the chemo.
Since my mother had begun to work again, I had my father with me for this first time. I still can't really drive because I don't really have good peripherals so its safer for me to be driven around. Not that I would have gone to this thing alone. But maybe it was because I was with my mother 24/7 since the beginning of this, just the two of us, I started to wish that she could have not gone to work that day. I love my dad, but he's nothing like my mother, and when they came in that first time with the bag of Cisplatin, I really wish she was there.
This IV bag was not like the rest in the least. It's encased in a black covering they put chemical hazard signs placed on the bag, the door, and my IV pump so that everyone would know that I was taking Cisplatin. When the nurse connects it to your IV, they have to wear a blue covering on their clothes and put a small covering on you, in case it spills on either of us.
This was why I needed my mother. I turned towards my dad, scared. His eyes were a bit wide and he was closely watching the nurse. If my mother was there, she probably would have looked even more frightened and try to cheer me up. My father is a man of few words. I didn't and yet did want to see them connect me and the chemo. I have a morbid curiosity for things and this was something new. It turned out to not be as bad as I thought.
I didn't feel a thing. Nothing.
I was surprised. It felt like when I would just be hooked up with liquids. My mother came by after work, but that night I stayed alone at the hospital. I was wide awake. It was weird. I couldn't go to sleep. I didn't even sleep after the chemo ended at 2AM. I think I fell asleep at around 3:30AM. Hopefully.
My first day of chemo began in the usual clinic. I come here for basically everything. Before taking the chemo, they have to make sure that my blood counts are all right. I don't see why. I had been told that chemo typically brings it down, so making sure they are up seems kind of redundant. (If I'm even using that word right.) Although, I'm not a doctor or know anything about the body, so I'm gonna put my trust in the people that should know what they're doing.
Once I was cleared, I was sent off to the main hospital. The fifth floor is where the patients of my clinic go to for anything and especially for chemos that required us to stay overnight in the hospital. I was wheeled into my room because I still have trouble with long distances and the main hospital is on the complete other side of the cancer institute. For this first one, I was brought in with my dad, since he drove me to my appointment. I got settled and they put me on my IV. Now, the reason why I was staying at the hospital was because the chemo I was taking was the first in its cycle. The beginning of each of my cycles begins with a chemo that last six hours through IV. The first chemo is always the roughest.
Chemotherapys have different side effects as do all medicine, but depending on the side effects determined how strong a chemo was. While taking radiation I took 4 weeks of a chemo called Vincristine at the same time. It's a quick chemo that only takes a minute to go through my IV. This chemo is not that strong, but the I did have one of the side effects, which is constipation. It fucking sucked. Like so much. I've never felt such stomach pain and pain in the stomach is the worst. At one point while I was in the hospital for it, I had to take morphine in order to handle the pain. But as long as you keep your colon in check then its a pretty harmless chemo.
The chemo I was preparing to take is not like that at all. Before taking it, I have to have an audiogram. A test that checks your hearing ability to determine where it is because this chemo can affect my hearing.Cisplatin, the chemo I was to take, can also messed up my kidneys with the amount of platinum it has. Another reason that I have to stay in the hospital is because it can give me delayed vomiting which is bad because the problem is that they could discharge me to my house, I end up vomiting, and I also end up dehydrating myself and go back to the hospital again.
Clearly I had cause for concern.
It didn't help that they had to hydrate me any time that I wasn't taking a medication or the chemo. Which is really annoying because it's a lot of peeing. The reason why this sucked was not the fact that I went every 20 minutes and could never get comfortable, no, it was the simple annoying fact that you have to bring the stupid IV pump with you since you were connected to it and those things are hard to navigate when you have no strength. I would always forget to plug it back it and it would set off an annoying alarm. This is only relaxed when I'm taking the chemo.
Since my mother had begun to work again, I had my father with me for this first time. I still can't really drive because I don't really have good peripherals so its safer for me to be driven around. Not that I would have gone to this thing alone. But maybe it was because I was with my mother 24/7 since the beginning of this, just the two of us, I started to wish that she could have not gone to work that day. I love my dad, but he's nothing like my mother, and when they came in that first time with the bag of Cisplatin, I really wish she was there.
This IV bag was not like the rest in the least. It's encased in a black covering they put chemical hazard signs placed on the bag, the door, and my IV pump so that everyone would know that I was taking Cisplatin. When the nurse connects it to your IV, they have to wear a blue covering on their clothes and put a small covering on you, in case it spills on either of us.
This was why I needed my mother. I turned towards my dad, scared. His eyes were a bit wide and he was closely watching the nurse. If my mother was there, she probably would have looked even more frightened and try to cheer me up. My father is a man of few words. I didn't and yet did want to see them connect me and the chemo. I have a morbid curiosity for things and this was something new. It turned out to not be as bad as I thought.
I didn't feel a thing. Nothing.
I was surprised. It felt like when I would just be hooked up with liquids. My mother came by after work, but that night I stayed alone at the hospital. I was wide awake. It was weird. I couldn't go to sleep. I didn't even sleep after the chemo ended at 2AM. I think I fell asleep at around 3:30AM. Hopefully.
The next day the nurses kept asking me how I felt and making sure I drank water. I honestly felt fine. No need to throw up and no tiredness. These were good signs and my doctor discharged me that day. My only problem: the medicine that was proscribed to me. I have to take a drug called Neupogen which are injections that help push blood cells from my bone marrow, since they become low after chemo. This process hurts. I get a lot of muscle pain and I don't particularly like Neupogen. I'm not scared of needles, but this made me sick of them. I take this medicine for only 14 days after my first chemo, but it gets tiring getting stabbed every night.
This day marked the first before I can go back to a semi-normal life again. Each week after, I just take Vincristine for two weeks and then I get a three week break before the next cycle begins. And so on, and so forth. Although there are 5 weeks that I do a different regimen.
In regimen B, I have to stay in the hospital for two nights for the first chemo. The chemo is only 4 hours long through IV, but I need hydration every 6 hours in between. Instead of two weeks of Vincristine, I do only one with a two week break instead of three. Its not bad, actually pretty calm compared to regimen A. This was good for me because I had a plan.
Ever since I woke up from my surgeries I had been hoping and praying that I would be able to see my grandmother and brother, who live in Puerto Rico. Well the rest of my family lives there and I really wanted to see my family.
I had asked my doctor if I could go and visit. He gave me the go ahead as long as I took out a problematic tooth and had at least two weeks of break from my last chemo. This was easy to accomplish.
And accomplish them I did.
This day marked the first before I can go back to a semi-normal life again. Each week after, I just take Vincristine for two weeks and then I get a three week break before the next cycle begins. And so on, and so forth. Although there are 5 weeks that I do a different regimen.
In regimen B, I have to stay in the hospital for two nights for the first chemo. The chemo is only 4 hours long through IV, but I need hydration every 6 hours in between. Instead of two weeks of Vincristine, I do only one with a two week break instead of three. Its not bad, actually pretty calm compared to regimen A. This was good for me because I had a plan.
Ever since I woke up from my surgeries I had been hoping and praying that I would be able to see my grandmother and brother, who live in Puerto Rico. Well the rest of my family lives there and I really wanted to see my family.
I had asked my doctor if I could go and visit. He gave me the go ahead as long as I took out a problematic tooth and had at least two weeks of break from my last chemo. This was easy to accomplish.
And accomplish them I did.
Wednesday, June 12, 2013
Holidays
It was clear to my mother the moment that we arrived, that we needed to find our own place to stay. Soon. Not only was it uncomfortable with two people stuck in a room, but my doctor appointment was in Orlando. Orlando is a 45 minute drive from my side of Kissimmee. These rides sucked. My first appointment with my doctor involved of lot of sitting up that I did not want to do, but did cause they needed to do their assessment on my. I remembered being in my wheelchair (cause I was prescribed one before I left the hospital) with a pillow cause it just sucked to hold my head up myself.
The doctors were all very kind. I don't remember much of their names mainly cause there was 9 doctors there. Each a different kind of neuro (brain) doctor. There was one that was a neuro surgeon and he looked at my stitches to make sure they were nice and in order. There was three neuro psychologists to determine how my feelings and emotions would change after surgery. There were other doctors that didn't step up so I don't really know what they were there for, and finally there was my primary oncologist (cancer doctor), Dr. Fouad Hajjar. He's awesome.
There was all these other paperwork and another social worker to fill and talk to , but I went back to my wheelchair and dozed off. I had no control of my energy at the time so I didn't really do much during the first two months.
It seemed that this was the beginning of my new life. Everything was getting settled. Except one major fact.
We didn't have a home.
Yeah sure, we had my mom's place at her friend's house, but he was planning to move out with his girlfriend in January. It was mid-December at this point and we needed to find a place soon. We looked all over Craigslist trying to find a house or another apartment to rent, but most were in fuckville Poinciana in the middle of nowhere or too pricey for such a small space.
During the search, Christmas and New Years past by us. We celebrated both at the houses of my mother's friends. Christmas day was spent at my sisters for a little bit, I hanged out (to the best of my ability) with my two nephews (one 9 years old, the other 5) and then we went to my mother's friends house to spend with their family. I was mainly asleep in the room that they let me lay in this whole time. Its boring, but I couldn't help it. New Year's evening was again at another of my mom's friend's house. I was in my wheelchair and since it was night time I had taken a nap beforehand so I got to stay awake for most of the activities.
Maybe it was the fact that it was finally hitting me that my life would be different for upcoming new year, but when that clock hit 12:00AM, I just started bawling. I just couldn't believe that this was happening to me. Like it never crossed my mind that I would be in a situation like this. I knew my aunt recently died of throat cancer, but I chalked that up to the fact that her husband smoked a lot. But this was really happening, and I didn't know where it was going to lead me. All my plans for after graduation were completely ruined. There was no possible way of going to Japan. It had been my one and only lifelong dream to go to Japan and to be an interpreter of some kind, living in that country. And now that wasn't an option anymore. I never asked God, "Why?" but at that moment the one thing I could think of was "Why now?". Why did this happened to me right before I was supposed to finish my last semester and graduate? WHY?!
My mother hugged me in my wheelchair and I could feel her tears on my shoulder. I'm sure she was thinking the same things. Wondering what the future of her baby girl was gonna be now. Wondering if she could keep the strength she was showing to me strong even though she wanted to just crumble under the pressure. My mother is a very strong woman, who has faced some incredible odds that I don't know how she acts like they don't affect her sometimes. I have seen my mother cry, but its so rare. She's just too strong to let shit pulled her down, and I admire that soo much about her. I want this experience to give me that same strength, for this is hard and I know cancer is genetic and I pray to God that my children don't experience it, but if that is to be in my path than I wan this to make me strong for it.
(I need a moment)
Anyways, we still hadn't found a place when my radiation sessions started this January. Now it really sucked to live at my mom's friend's place. I was supposed to have radiation Monday thru Friday, every week for six weeks and then a month break before I would have my chemo sessions until next March 2014.
My appointments were so early that we would have to wake up at 6:00AM to get ready (since I was slow paced and needed help from my mother) and then drive to the cancer institute at the hospital. Every damn day. I hated it. My only benefit was that I was the youngest patient at the radiation appointments, and that I could lay on my stomach and catch some Z's since my radiation covered my head, upper and lower back, which made it take 1-1 1/2 hours. But this was not easy on my mom's wallet. With gas prices being so high my mom would have to fill up halfway into the week. But then a solution was presented to us by one of my nurses.
The Ronald McDonald House.
The doctors were all very kind. I don't remember much of their names mainly cause there was 9 doctors there. Each a different kind of neuro (brain) doctor. There was one that was a neuro surgeon and he looked at my stitches to make sure they were nice and in order. There was three neuro psychologists to determine how my feelings and emotions would change after surgery. There were other doctors that didn't step up so I don't really know what they were there for, and finally there was my primary oncologist (cancer doctor), Dr. Fouad Hajjar. He's awesome.
There was all these other paperwork and another social worker to fill and talk to , but I went back to my wheelchair and dozed off. I had no control of my energy at the time so I didn't really do much during the first two months.
It seemed that this was the beginning of my new life. Everything was getting settled. Except one major fact.
We didn't have a home.
Yeah sure, we had my mom's place at her friend's house, but he was planning to move out with his girlfriend in January. It was mid-December at this point and we needed to find a place soon. We looked all over Craigslist trying to find a house or another apartment to rent, but most were in fuckville Poinciana in the middle of nowhere or too pricey for such a small space.
During the search, Christmas and New Years past by us. We celebrated both at the houses of my mother's friends. Christmas day was spent at my sisters for a little bit, I hanged out (to the best of my ability) with my two nephews (one 9 years old, the other 5) and then we went to my mother's friends house to spend with their family. I was mainly asleep in the room that they let me lay in this whole time. Its boring, but I couldn't help it. New Year's evening was again at another of my mom's friend's house. I was in my wheelchair and since it was night time I had taken a nap beforehand so I got to stay awake for most of the activities.
Maybe it was the fact that it was finally hitting me that my life would be different for upcoming new year, but when that clock hit 12:00AM, I just started bawling. I just couldn't believe that this was happening to me. Like it never crossed my mind that I would be in a situation like this. I knew my aunt recently died of throat cancer, but I chalked that up to the fact that her husband smoked a lot. But this was really happening, and I didn't know where it was going to lead me. All my plans for after graduation were completely ruined. There was no possible way of going to Japan. It had been my one and only lifelong dream to go to Japan and to be an interpreter of some kind, living in that country. And now that wasn't an option anymore. I never asked God, "Why?" but at that moment the one thing I could think of was "Why now?". Why did this happened to me right before I was supposed to finish my last semester and graduate? WHY?!
My mother hugged me in my wheelchair and I could feel her tears on my shoulder. I'm sure she was thinking the same things. Wondering what the future of her baby girl was gonna be now. Wondering if she could keep the strength she was showing to me strong even though she wanted to just crumble under the pressure. My mother is a very strong woman, who has faced some incredible odds that I don't know how she acts like they don't affect her sometimes. I have seen my mother cry, but its so rare. She's just too strong to let shit pulled her down, and I admire that soo much about her. I want this experience to give me that same strength, for this is hard and I know cancer is genetic and I pray to God that my children don't experience it, but if that is to be in my path than I wan this to make me strong for it.
(I need a moment)
Anyways, we still hadn't found a place when my radiation sessions started this January. Now it really sucked to live at my mom's friend's place. I was supposed to have radiation Monday thru Friday, every week for six weeks and then a month break before I would have my chemo sessions until next March 2014.
My appointments were so early that we would have to wake up at 6:00AM to get ready (since I was slow paced and needed help from my mother) and then drive to the cancer institute at the hospital. Every damn day. I hated it. My only benefit was that I was the youngest patient at the radiation appointments, and that I could lay on my stomach and catch some Z's since my radiation covered my head, upper and lower back, which made it take 1-1 1/2 hours. But this was not easy on my mom's wallet. With gas prices being so high my mom would have to fill up halfway into the week. But then a solution was presented to us by one of my nurses.
The Ronald McDonald House.
Tuesday, June 11, 2013
Reaction
Maybe it was because I was still feeling pretty doped up that I didn't have much of a reaction when I heard the news that my tumor had cancer. It just didn't really click with what I was going through. I passed out after the doctor told my mother. I really don't remember being conscience for very long in the hospital until three days before I was about to leave. And still, I thought nothing of the fact that it had cancer. I just thought, "Hey, at least its out and gone now."
I really didn't know what to think of it and so I didn't. I just felt so tired all the time. Every time they tried to make me walk, I hated it. My brain wasn't settled yet from the surgery so it hurt every time I moved from laying down to standing up. It felt like my neck wouldn't want to hold my head up sometimes. Especially when I still had the drainage connected. With the drainage there was a lot of tubes and a bag full of the spinal fluid attached to my head. It felt like an extra five pounds sitting up with that thing.
I honestly can say that being in that hospital at that time was probably the worst I have ever felt in my life. I think I tried to get up and get away, they stopped me of course, and I realized I was still in the hospital, but in my mind I felt like I was in some strange room where I wasn't supposed to be and it was not in the hospital but in my nurse's house. Strange, huh. But imagine that was your reality half the time that you weren't awake and it changed constantly. I'm surprised now that I could even answer their questions right when they were trying to check on my memory after operation.
Because, for those who don't really know much about surgeries, there's always a risk to every surgery, but brain surgery is the worst. Your brain controls the body so when you fuck with it, dangerous things can happen. So that some of you can understand why my doctors are very proud of me, I will tell you some of the possible effects of having brain surgery.
I will probably: not being able to talk, not being able to walk, not be able to remember to write, not be able to read, not be able to coordinate my hands, and finally I might just die from the surgery.
Jesus.
This is what they told my mother while I was "asleep" before the surgery took place. How can they say that?! I know they are trying to prepare her for the worst, but no mother wants to hear that their baby might end up like a baby again or worse just die! Doctors are so fucking cruel! I could never be a doctor. I couldn't put down hope like that. I care too much and those situations are the worst to be in.
The last three days were full of my doctor and therapist arguing over whether I was ready to leave the hospital. I had lost balance in my legs and so my therapist wanted me to walk a little bit better before sending me out into the world, but she also wanted me to enter the rehab center in Gainesville nearby instead of just discharging me to my house. My doctor didn't think I needed rehab, for whatever reason and I was discharge to go home. For this all I remember was that I had an appointment with an oncologist in Orlando for my chemo and radiation and that I slept the whole way home. Gainesville is only two hours away from my home so it wasn't a long trip but I just felt so exhausted.
Now, while I was in Tallahassee getting my degree at FSU, my mother (and indirectly so did I) had a lot of financial issues. She had gotten into a motorcycle accident and she couldn't work for about two months. This fucked shit up for her financial needs. It ended up with her having to be her friend's roommate while she saved up money to get her own place eventually. Now, admittedly, I probably didn't help with that endeavor since I still rely on my mother even though I live on my own in Tallahassee and I would always ask her for money and help with my own financial needs.
So when I returned "home", I returned to my mother's room at her friends place. Now for my mother this situation is helping her out, but for me, this situation is not the greatest. My mother just had a room and in order to not bother her roommate and his girlfriend, I didn't leave the room at all. Not that I had the energy to do so.
Even though I was back home I didn't really have the comforts of home at hand. But until my mother could find another place this is what we had.
This was gonna be tough.
I really didn't know what to think of it and so I didn't. I just felt so tired all the time. Every time they tried to make me walk, I hated it. My brain wasn't settled yet from the surgery so it hurt every time I moved from laying down to standing up. It felt like my neck wouldn't want to hold my head up sometimes. Especially when I still had the drainage connected. With the drainage there was a lot of tubes and a bag full of the spinal fluid attached to my head. It felt like an extra five pounds sitting up with that thing.
I honestly can say that being in that hospital at that time was probably the worst I have ever felt in my life. I think I tried to get up and get away, they stopped me of course, and I realized I was still in the hospital, but in my mind I felt like I was in some strange room where I wasn't supposed to be and it was not in the hospital but in my nurse's house. Strange, huh. But imagine that was your reality half the time that you weren't awake and it changed constantly. I'm surprised now that I could even answer their questions right when they were trying to check on my memory after operation.
Because, for those who don't really know much about surgeries, there's always a risk to every surgery, but brain surgery is the worst. Your brain controls the body so when you fuck with it, dangerous things can happen. So that some of you can understand why my doctors are very proud of me, I will tell you some of the possible effects of having brain surgery.
I will probably: not being able to talk, not being able to walk, not be able to remember to write, not be able to read, not be able to coordinate my hands, and finally I might just die from the surgery.
Jesus.
This is what they told my mother while I was "asleep" before the surgery took place. How can they say that?! I know they are trying to prepare her for the worst, but no mother wants to hear that their baby might end up like a baby again or worse just die! Doctors are so fucking cruel! I could never be a doctor. I couldn't put down hope like that. I care too much and those situations are the worst to be in.
The last three days were full of my doctor and therapist arguing over whether I was ready to leave the hospital. I had lost balance in my legs and so my therapist wanted me to walk a little bit better before sending me out into the world, but she also wanted me to enter the rehab center in Gainesville nearby instead of just discharging me to my house. My doctor didn't think I needed rehab, for whatever reason and I was discharge to go home. For this all I remember was that I had an appointment with an oncologist in Orlando for my chemo and radiation and that I slept the whole way home. Gainesville is only two hours away from my home so it wasn't a long trip but I just felt so exhausted.
Now, while I was in Tallahassee getting my degree at FSU, my mother (and indirectly so did I) had a lot of financial issues. She had gotten into a motorcycle accident and she couldn't work for about two months. This fucked shit up for her financial needs. It ended up with her having to be her friend's roommate while she saved up money to get her own place eventually. Now, admittedly, I probably didn't help with that endeavor since I still rely on my mother even though I live on my own in Tallahassee and I would always ask her for money and help with my own financial needs.
So when I returned "home", I returned to my mother's room at her friends place. Now for my mother this situation is helping her out, but for me, this situation is not the greatest. My mother just had a room and in order to not bother her roommate and his girlfriend, I didn't leave the room at all. Not that I had the energy to do so.
Even though I was back home I didn't really have the comforts of home at hand. But until my mother could find another place this is what we had.
This was gonna be tough.
Monday, June 10, 2013
Medullablastoma
If you didn't know; in November 28, 2012, I went to the ER for having extremely bad headaches. they were so bad that I would literally throw up whenever I got them or just stay on bed because I couldn't move. I was supposed to go to the school clinic for an appointment with the head doctor, but I felt waay to horrible to even stand. Thank God I had my good friend, Anna, taking me to my appointment anyways. I don't remember if I told her or if she forced me, but we ended up going to the ER straight away instead.
It was kinda funny when I think back on my visit, cause Anna just took me straight to the ER, and I didn't have any time to change into proper clothes, or even get shoes! But it didn't matter anyways, I was put into a bed and then they decided to give me a CT Scan. That's a machine that they lay you down in and it scans your head, giving x-rays back to the doctors. I was fine in the scan. My headache was gone at this point, so I was just chilling, feeling like I was in an episode of House. They rolled me back to the ER and took their time reading their results. I didn't have time to grab my phone so at this point I had asked Anna to go get it, since I had my keys with me. Also to go get my a burger from McDonalds. I was starved. I hadn't breakfast since I was throwing up all freakin' day.
The doctors came back while she was gone and told me the one thing I didn't want to hear. They said that they found a mass in my CT Scan, but to make sure it wasn't some defect of the equipment, they wanted me to get a MRI as well. Its the same thing but stronger at detecting things, I guess. I still don't know the difference til this day. Did the MRI, same thing. I still had the mass showing up. Basically, the doctors told me that I had a tumor. Now, I didn't have much reaction to this whole thing until now, but I knew that typically tumors meant cancer. At the time I didn't think cancer, cause I knew there were non-cancerous tumors out there, so I didn't panic. I just said, "OK",
They admitted me in the hospital. I don't know why. Maybe they told me, maybe they didn't. Anna had to find me since I didn't have a phone to tell her that I had moved. I told her what they found and had my burger. She later left with another friend of mine that evening. My big in the Vietnamese association at school came to see me at night with some other of my friends, I was happy to see them. This whole thing was making a turn and I didn't know where it was going. At this point I had my phone again, so I could call my mother. I had called her with the phone of a admittance person to tell her the news, but this time was to tell her that they were admitting me into the hospital. She was hysteric. I feel bad for her. No one wants to hear that their child is in the hospital with a tumor. She was planning to come up and visit me the next day early in the morning.
Since I was studying at Florida State, I was in the hospital in Tallahassee. I from Kissimmee, a town near Orlando. Its an four hour drive up from Kissimmee to Tallahassee. So, I wasn't expecting my mom any time soon. The next morning I had told my sorority friends of my situation. My line sisters, roommate, and another sorority sister came to see me once they were out of class. My mom made it just behind them, and good thing. I was told earlier that I were to have a surgery to get the tumor out, but I was to go to Gainesville (Gator country, eww!) in order to have the operation. My mom made it just in time before they sent me by ambulance to Gainesville, where she followed closely.
I was checked into my room in the pediatric ICU. As I was not 21 yet, I still fell under pediatrics. Its dumb I know, but at least they're nicer. The next day I was to have my surgery.
Now, everything gets confusing. I'm not gonna write about my experience there cause one, I don't really remember cause of the morphine, and two, I dreamt and saw some crazy shit. I don't know why I had these (I don't know what else to call it) illusions, but they were pretty damn vivid and tripped me out. My mother told me that I was in that hospital for two weeks. I only remember the last three days and the first day. The only things I can remember while being there were this: it was the year 2012. Obama was president, my sister's birthday was coming up on the fourth, my godmother came, my boyfriend(at the time) came, my dad was there for a while, my sister picked up my dog from Tallahassee, and I had three surgeries in my time there. One, to take out the tumor, one, to drain the spinal fluid and one to seal up the drainage to make a VP shunt, and that all my nurses, doctors, surgeons, were booing the fact that I'm a Seminole. That's it. Seems a lot, but my mom tells me otherwise.
When I was conscience I didn't want to put too much info on what was happening to me. I have a lot of friends on Facebook that are really just acquaintances, or family members I don't really talk to, or just old high school friends that I really don't talk to. I mainly told my close friends and sorority sisters what was happening....to the best of my ability. While I was in my dazed state, I actually heard the doctor tell my mother that the surgery was success, however after they got the results of the tumor from the lab it turned out that my tumor had stage 1 cancer. A cancer called medullablastoma. A cancer that is typically found in children ages 3-8 years old. There is an one in one thousand chance for a person of my age (20 years old) to get this cancer.
Well fuck.
It was kinda funny when I think back on my visit, cause Anna just took me straight to the ER, and I didn't have any time to change into proper clothes, or even get shoes! But it didn't matter anyways, I was put into a bed and then they decided to give me a CT Scan. That's a machine that they lay you down in and it scans your head, giving x-rays back to the doctors. I was fine in the scan. My headache was gone at this point, so I was just chilling, feeling like I was in an episode of House. They rolled me back to the ER and took their time reading their results. I didn't have time to grab my phone so at this point I had asked Anna to go get it, since I had my keys with me. Also to go get my a burger from McDonalds. I was starved. I hadn't breakfast since I was throwing up all freakin' day.
The doctors came back while she was gone and told me the one thing I didn't want to hear. They said that they found a mass in my CT Scan, but to make sure it wasn't some defect of the equipment, they wanted me to get a MRI as well. Its the same thing but stronger at detecting things, I guess. I still don't know the difference til this day. Did the MRI, same thing. I still had the mass showing up. Basically, the doctors told me that I had a tumor. Now, I didn't have much reaction to this whole thing until now, but I knew that typically tumors meant cancer. At the time I didn't think cancer, cause I knew there were non-cancerous tumors out there, so I didn't panic. I just said, "OK",
They admitted me in the hospital. I don't know why. Maybe they told me, maybe they didn't. Anna had to find me since I didn't have a phone to tell her that I had moved. I told her what they found and had my burger. She later left with another friend of mine that evening. My big in the Vietnamese association at school came to see me at night with some other of my friends, I was happy to see them. This whole thing was making a turn and I didn't know where it was going. At this point I had my phone again, so I could call my mother. I had called her with the phone of a admittance person to tell her the news, but this time was to tell her that they were admitting me into the hospital. She was hysteric. I feel bad for her. No one wants to hear that their child is in the hospital with a tumor. She was planning to come up and visit me the next day early in the morning.
Since I was studying at Florida State, I was in the hospital in Tallahassee. I from Kissimmee, a town near Orlando. Its an four hour drive up from Kissimmee to Tallahassee. So, I wasn't expecting my mom any time soon. The next morning I had told my sorority friends of my situation. My line sisters, roommate, and another sorority sister came to see me once they were out of class. My mom made it just behind them, and good thing. I was told earlier that I were to have a surgery to get the tumor out, but I was to go to Gainesville (Gator country, eww!) in order to have the operation. My mom made it just in time before they sent me by ambulance to Gainesville, where she followed closely.
I was checked into my room in the pediatric ICU. As I was not 21 yet, I still fell under pediatrics. Its dumb I know, but at least they're nicer. The next day I was to have my surgery.
Now, everything gets confusing. I'm not gonna write about my experience there cause one, I don't really remember cause of the morphine, and two, I dreamt and saw some crazy shit. I don't know why I had these (I don't know what else to call it) illusions, but they were pretty damn vivid and tripped me out. My mother told me that I was in that hospital for two weeks. I only remember the last three days and the first day. The only things I can remember while being there were this: it was the year 2012. Obama was president, my sister's birthday was coming up on the fourth, my godmother came, my boyfriend(at the time) came, my dad was there for a while, my sister picked up my dog from Tallahassee, and I had three surgeries in my time there. One, to take out the tumor, one, to drain the spinal fluid and one to seal up the drainage to make a VP shunt, and that all my nurses, doctors, surgeons, were booing the fact that I'm a Seminole. That's it. Seems a lot, but my mom tells me otherwise.
When I was conscience I didn't want to put too much info on what was happening to me. I have a lot of friends on Facebook that are really just acquaintances, or family members I don't really talk to, or just old high school friends that I really don't talk to. I mainly told my close friends and sorority sisters what was happening....to the best of my ability. While I was in my dazed state, I actually heard the doctor tell my mother that the surgery was success, however after they got the results of the tumor from the lab it turned out that my tumor had stage 1 cancer. A cancer called medullablastoma. A cancer that is typically found in children ages 3-8 years old. There is an one in one thousand chance for a person of my age (20 years old) to get this cancer.
Well fuck.
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