Every Damn Day

I know I don't update as often as I should, (more how people would like), but the problem lies in the simple fact that not much really goes on in my life. Maybe if I was back in school, I would probably be a little bit busier with college life and all of its spoils, but honestly when you come back home there isn't much to do.




I'm too used to my life in college. I miss it so much. Life back home is simply day to day, a bit boring if you ask me. The most exciting moment in my life is when someone has a birthday. People tend to actually want to do something other than work. If not for the daily cycle of life, I would be a lot more bored than I am.




Oh sure, I love seeing my family and I do (impossible though it is) enjoy hanging out with my (annoying) nephews, but it becomes pretty mundane really quick when it's all I can do. I'm limited by my many disabilities. Granted, I have it a lot better than some other cancer patients that I have seen around, but it's the small things that I have lost that really hit home.




Balance and strength are barely noticed by folks. The only people that really notice it are toddlers when they first begin to walk and move about. I literally feel the same way as a toddler. I can barely walk without some support, I have to someone always around me, just in case I happen to fall or get into something that I can't handle with my own strength, and I'm forced to eat things that are "good" for me even though I don't like it.




I'm 22, feels like I'm 2.




This seems to be something that a lot of people tend to forget when they take care of me. I understand and definitely know I need the help, but I'm an adult so treat me like one. I would rather be treated the same way you treat your frail grandma than your 2 year old child. Like, come on. I know I look fifteen but, I also have to deal with the fact that I am still in pediatrics, so relax. The nurses in Peds treat me as an adult, you can too. If anything, they're the ones that constantly remind that I'm an adult with the whole, "I need your parent's signature, oh wait, you can sign!" Ugh, my life.




It doesn't help that my brother is getting married and will become a stepfather to two teenaged girls, who happen to be either at my height at 11 and taller than me at 15. I got the short end of this stick, badump. My life is a big joke.



Although sometimes its not so bad getting treated like a kid. You get free stuff at the hospital all the time and the Child Life Service volunteers are always really nice, even though I can tell they are a bit shock when they come to my room and see on my chart that I'm not the fifteen year old they thought I was. It passes quickly and soon I'm getting all of the treats that the kids get: movies, iPad, board games, etc. It makes taking chemo go a lot quicker, as an alternative to just sleeping the whole time. I admit, I much rather get a stick to my finger like a diabetic, rather than a needle when it comes to getting my blood check. I've have enough needles so far.




With the problems I have with my eyes, it makes it hard for me to be able to drive and so I'm stuck being driven around. I know sometimes it's nice to not have to drive around, but eventually it gets on your nerves when you want to go somewhere, but you're limited to the availability of whoever can take you's schedule. Independence is non-existent in my life. I think toddlers have more independence than I do. When I was able to take the Lynx disability bus, it helped a lot, especially when it came to attending my appointments, but eventually it became an annoyance than helpful because it would arrive late to my house or even worse late to my appointment. Another problem with it, was the fact that it would have a route and sometimes my stops weren't the next ones to go to and I would end up on the bus for about an hour before returning home. How I longer for the ability to drive again. Eventually I had surgery done to my eyes and for one week I was able to drive myself around.




I had never felt more free.




But my left eye decided that it didn't like being straight and started turning in again. It didn't become as bad as it was before I had eye surgery, but it was enough of a tilt that it made it difficult to not see double even with the prism stickers that would try to fix my sight. I am due for one more surgery to the left eye to hopefully make it straight again, but no details are coming in besides the fact that they won't take my primary insurance. I know I'm trying to wait patiently cause it has before when I get too excited for something to go right for me and something wrong always happens. Life just has to spite me. So I'm waiting, patiently, my potential freedom can take its time, cause I don't want to lose it again. I want my eye to be fixed forever not temporary. Everything that is being affected needs to be permantly fixed, ain't nobody got time for this temporary shit.




When my ability to drive comes back to me, then I can say that I have beaten cancer. It seems so silly to base my progress on such a thing, but driving to me has always been a type of freedom/independence for me. I was late with getting my license in high school and super late when it came to owning my first car. I didn't get my car until my second semester in college. That dependence of relying on others to get my own things done was always a problem for me as I grew up. Especially for private things, I found it uncomfortable whenever I had to do things such as checking my bank account or even do groceries. Plus, public transportation can be a bit strange, not going to say anything bad about it cause it takes me where I need to go, but strange folks go on public transportation and they make the whole experience strange, I like the privacy of having my own car and ability to go wherever I want a lot more.




So I'll keep the hope and pray that everything works well and that I don't have to redo this experience again. I feel that I'm doing pretty well for having to go through this experience another time, but its scary not being able to stop the thought of this possibly reoccurring another time late in life. I have faith in my doctors and even though I wish to end treatment in time to go back and finish my degree this Spring, I feel that this will take another year and I will have to postpone my education until this is completely over. It sucks, but I rather be sure that I'm healed before continuing school.

Positivity is the Key

I feel a bit strange this time around.

I really don't know what to think of what I am going through this time. Is it because I have already gone through this before? Have I become immune to the chaotic life that comes with being a cancer patient? Maybe. A year could do that to a person.

I just feel like whatever. Been there, done that, have the T-shirt. (Literally have the T-shirts.)

I guess I was expecting something different. There are some things. I can walk a whole lot better now than I could before which I am so thankful for. I'm not chained to stay in bed, I can actually walk around and act as if I wasn't a cancer patient getting chemo, not like I'm trying to catch something else by walking around a hospital, but this freedom is nice. Also helps that I got the hook up with the nurses. They already know my likes and dislikes and what I'm probably going to choose for how I want to do the treatment, its nice. Not just for me either. It helps them as well. I don't scream, cry, or yell, and I go to sleep and stay asleep every night. It's hard being a pediatric nurse, I feel for them.

Although I love being in pediatrics. The nurses are so kind and they have the Child Life services workers who are EXTREMELY nice people and bend over backwards to try to please all the children in the hospital. It sucks that these kids have to be in the hospital, but its nice that there are services for them to make it easier and they also help the parents which is another good thing. I take advantage of it. They know I'm older, but they let me use the same things as the children. I still feel like a kid at heart so I sometimes ask for board games, but I mainly use the iPad or watch their huge selection of movies. I feel so old when I see 90s movies, but its all good.

The chemo is going good so far. No pain. No nausea. No problem. There is that minor side effect of possible diarrhea, but I'm not having that problem so I say that the chemo is going good. I'm actually more concern for my eyes again. For those that don't remember, the brain tumor removal surgery left my eyes messed up. The left one turned in and then the right one followed suit a month later. I've had eye muscle surgery to both eyes, but now the left is starting to turn in once more. If I scrunch up my face or if the object is close, I can see regularly (singular) but otherwise I'm starting to see double again. Problem.

This regime of chemo I have a week of outpatient appointments, all of which are a day right after another, so I can't really be driving if my eyes are turned in. This is why I am more concerned with my eyes. Chemo is no biggie, its the other factors of my body that I take more concern with. My legs are still weak and I still have no balance so I'm basically still handicapped and that concerns me more than the cancer to be honest. I know there isn't much I can do with cancer besides hope it goes away, so that's probably why I don't concern myself with it too much. The doctors know more of what to do than I could ever imagine so I'm letting all the responsibility go to them. That's all I can do. Cancer is not a participatory disease that you can help out with. You just got to roll with the punches, and believe me there is a lot.

This is why I thank the Lord that I have the support that I do. Friends and family have all told me of their support and love and that's the best thing that I have to fight this cancer. If there was one thing I wasn't expecting when I received the news that I had cancer, it was all the support that I would obtain from my family and friends. It's not like I thought I had bad friends or anything like that, I just didn't realize how important I was to so many people and it gives me all of the warm and fuzzy feelings in the world.I love my friends to death and I don't regret how I got them. People would say that this is something that makes your true friends come out and all of my friends stepped up. I know I good friends and this is just proof. The people that I considered to be my friends, really are and this is a shit situation to question that, but I'm glad that they past the test. Sorry guys. Just know that I love our friendship and that I will forever be in their debt for all of their help and support. I know I don't say much about it, but I am so thankful to have the support group that I have.

Friends are important. My strength is and comes from my friends. People tell me that I'm strong, but really I feel like when people tell me I'm strong, that I'm strong. There's only so much, a person can do on their own. People are naturally social beings and we thrive in group settings, there is no "I" in team. So I want to say "Thank you". To all of my supporters, you guys are the best and don't ever change!

This ending is so lame, but I'm being honest here!

ALL OF THE WARM FUZZY FEELINGS!

I guess that's why this time feels different from the last. We're sort of all on the same page and it's not a punch in the face like the last time. We've been through this before, we know what to expect and we all are going to get through this. This time cancer is going to have no way of getting back.

Even though I am in a good mood, I know I am not in my ideal situation. This was not in my plans at all. When I was high school, no one said that the reason I wouldn't be finishing my school was not because of financial reasons, or even the fact that college would be too hard for me, but because of a disease (a CHILDHOOD) disease would put its big foot in the way of my dreams. Wish I had the forewarning. If everything had went the way it was planned to go down, I would be the first in my family to have a BA degree. That's pretty big. Still pretty big since I'm still on that path. I'm not going to give up on my dreams, I know that one day I will make the come true.

I can't forget my dreams. That would be too costly for me to let go. There are the only things I have to really strive for and without them, I honestly don't know what I would do, who I would even be?

That's why I don't get the people that are out there just doing nothing. Absolutely nothing is being done in their lives and they are OK with that. I can't. I don't see the point of it. What fun are they having? It's all party and games and I'm not saying that there is something wrong with those things. I party, I play games, I do the same thing, but in the end what are you going to do? There's a moment in life where you do settle down for what is destined for you, but you got to make the right choices to get there. I can't just sit around waiting for life. Life is out there and it's not going to wait for you, it's going to bite you in the ass and get you moving, and that won't necessarily be a in a good direction either.

Cancer has taught me that. Shit doesn't happen the way that you want to happen. Life has choices and you must choose whether you are going to let things go by or do something. I fall in the latter range. I already have my list. Somehow, some way that list is going to get done before I die (which is not happening anytime soon) and I'm going to be a old happy camper.

I'm ending this post on a good note. I'm in a good mood, (probably because I'm leaving the hospital today) and honestly I don't know what to write about today.

:)

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. 

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.