Day +8

It's been a week and a day after my transplant. I'm feeling a tad bit better, maybe because it's all the drugs they have me on. In all. this week was the roughest week of my life. The chemo completely knocked out all my energy and left me with really bad side effects that just make me not want to wake up in the morning.

The good thing is the doctors understand that I'm in a lot of pain so they tell me to ask for pain meds whenever I need it. Ahhh music to my ears.

The bad thing is some of those medications make me too loopy and caused me to pull out my triple lumen catheter. I believe this happened on Tuesday or Wednesday. I was alone in my room and I was walking to the bathroom to get something, I don' know what. And all of a sudden my IV pole feel on me. I blacked out for awhile and then the next thing I realized is that felt all this cold stuff on me. So I pulled in the emergency bell in my bathroom. When my nurse got there she looked really shocked. She said that my whole line came out. I needed a new one that night. But before I could get a new one I needed platelets. So the nurse stuck me about a million times before she could find a vein to put the IV in. I hated the experience of having to get a new one within less than a week of having one. It's not a desirable at all. Regardless to say that night sucked a lot. Then when my mom found out she made a new rule that I'm not allowed out of bed without assistance, not like I have the strength to get out of bed anyway.


Last night something else very eventful took place. My ear was bleeding for at least two hours. My ears started to itch so I decided to clean them, very gently . I sort of felt my self poke my right ear but I thought it was nothing. So I took a nap. Mid-nap my right ear felt really weird, like there was water in it. So I started snapping over my right ear to see if I was going deaf and my hearing was really muffly. So I leaned my head to my right and all this blood started rushing out. They had to give me more platelets and a lot of gauze. It felt so weird. I've never bleed from my ear before. After that I just felt dumb, like what dumbass cleans their ear and then has it bleed for two hours, oh yeah, I do!


There were some points this week where I thought I didn't have the strength to make it through the night. I honestly thought my body was just going to give out on me. I'm surprised it hasn't yet. The doctors said that this is the worst part and that from here things should get better once my counts start to pick up again, but it's going to take time. It seems sad but I can't imagine myself getting better for some reason. I don't feel like myself at all anymore. I feel like I let it get the best of me. But I hope the doctors are right.

As for school work and stuff I'm still trying to get it done. My mom and tutors met with my teachers from school. I had the choice of taking a medical leave of absence where I'd just go back to school next year or whenever I was allowed to go back and finish. Or I could try to get as many credits in to graduate this year. Appearently, I have good grades so I only need like 10-15 credits to graduate, which I can hopefully pull off by by June. Me actually attending the graduation is still in question though.

I have to apologize to some of my friends that have been texting me/facebooking me and I haven't been getting back to them. I'm sorry. I just really didn't have the energy. I'll try a little harder this week if I have more energy.


You know how I think that no one really reads this at all? Well today I was checking my facebook and I got a message from a girl I used to have a class with last year. She graduate and went to college and I never did talk to her that much when I had class with her. But guess what, it turns out she reads my blog! I was really touched by what she had to say and in fact it brightened up my day a lot. Thanks to her my day, and possibly tomorrow will be about 10 times better all because she decided to reach out to me. I really appreciate things like that and I don't think it's creepy :)

This week was really rough on me. My counts hit rock bottom. I have sores in my mouth and all along my throat so I can't talk or eat anything. Swallowing anything is really difficult so the doctors have switched most of my meds to IV. i have really bad belly pain sometimes. I wake up choking on my own saliva build up. Everything hurts. I feel so defeated. When I get more energry I'll tell you about how my line got pullled out and I had to get a new one. Also today my ear was bleeding for at least 2 hours. I'll write more later.

Day + 4

Sorry I haven't posted in awhile. The chemo really did a number on my energy level. I had my transplant on Friday Feb 20th. I guess everything is supposed to be going as planned. I've been feeling extremely week since last week and I just haven't been in the mood for anything. I've been throwing up and peeing a lot and sleeping in between the two. My counts are expected to drop even more by the end of the week and then we're supposed to wait for my new cells to take over and from there get healthy, or something to that effect. I will do my best to post more later including my dream I had about Sandor.



Sorry for the grammar errors

Is it still day -3?

In no way possible am I taking this wonderful time on earth for granted. But it's just that the days are longer when you're hooked up to a IV pole and your stomach doesn't know it's function. My mother and I (well, mainly my mother) got the whole " what are you doing about school work" thing out of the way. But I still don't know what's going to happen lol. I guess they'll come in my room and try to teach me stuff while vomiting every five minutes, but hell, I'll still graduate.

MY WONDERFUL (former) (cooler) ONCOLOGIST came to visit me today! She left maybe a half hour ago. I love having her presence around, it's very calming and soothing. We joked about old male doctors and wondered if they have personalities. I love-love-love getting to know doctors. They're almost my favorite people to talk to, when you find the right ones though. I know that they're "more than doctors" they're people too and they have "families" and other cool stuff, but that's what I love about it, they still come back to job, to save a life, to make someone laugh, it's their life style. With all that craziness wrapped in those little heads of theirs you wonder why would someone study and work as hard as they did for as long as they did for?Well most people might say the reason for working so damn hard is for the money, but the real ones do it for patients like me :)

Day - 4; Not Suited for Weak Stomachs

Today I threw up for the first time since December 1st. Three times at that. Some of my friends ask me what it's like to be on chemo and it's just that, throw up.When you're not throwing up you're thinking about it, and when you're not thinking about throwing up it's because you just did and you're hoping it's the last of it. You feel tired all the time. And you get tired of feeling tired. You smell extremely chemically because of the combination of meds and chemo all going into your body at once. So with that being said I always want to take a shower and have a nice new change of clothes. Some of us develop a heightened sense of smell and our nose becomes our biggest enemy which doesn't help with our already sensitive stomachs. And this is before our counts drops!!! Tuned in to see what (can ) happens when we're full blown neutrapenic (without an immune system-low white blood count). Oh the possibilities are endless.

Day -5: Stay strong...

It's only the third day and I find myself breaking down into tears already. Today was a drag in every scene of the word. I tried my best to live true live inside these hospital walls and "fight" against this thing because " I can beat it, I'm strong" which is what everyone keeps telling me. Well what is strength? Strong, like muscle? or high hopes? Because at this point I have none of those. I'm physically, emotionally, and academically drained of everything. Every time I look up at Samson (my IV pole) I just want to disconnect from it in a second and just run as far as I can. Not knowing, not caring that I have cancer. Forgetting I have cancer without consequence. But this awefull feeling in my stomach, weakness in my body and tears in my eyes remind me that running away isn't a choice right now, but it sure would be nice. I don't see how strong I can be when I break down crying at the end day 3 (day-6) and I still have a lot more to go. I guess strength is a day by day thing that I'm supposed to accumulate through every dose of chemo.


side note:
As I was crying in my mommy's arms she said to me "The first time around, you were the one keeping my hopes up. You were always smiling. Never sad and I thought if she's happy then I should be too. The only difference now is that you're older and you understand a lot more"

Day -5

I'm loosing tract of days and events now. I'm not sure if what happened, happened yesterday or the day before that. It feels like I've been in here for a month already. I'm not used to everyone here yet so the awkwardness factor still makes me like new and that I still have a long way to in here. For the most part of the day I'm by myself until my mom or dad arrive in the evening or night. With no residences here I have no one to bother and occupy my time with. I can honestly say I miss being in pediatrics. It just seems more inviting down there, especially for a child. You have about 3-5 doctors/nurses/students seeing you in the morning and tickling your belly and then a resident at night to follow up on all that tickling fun. Maybe I'll get used to all the doctors not waning to tickle me night and day, but not anytime soon.


I keep thinking about everyone and how they're doing while I'm stuck in this box. Most likely everyone is going on with their daily routines. Time has stopped in my box til I get better. Which is hard for me to say. Because I still want to have fun with the very few friends I have left...

I've lost my train of thought with this post. I'll continue later.

Day -5: I'll try better next time

Day -6: Happy Valentine's Day

I was never a Valentine's day fanatic. Sure, the chocolates and stuff are great but not when you're your own Valentine. I believe that everyone should show their love for one another every chance they get and not just one day out of 365. But it is nice to see people happy and going out of their way to find the best bouquet of flowers, or the perfect piece of jewelry for their loved ones.

Being in the hospital this Valentine's day doesn't make it any different than if I were at home or at school. Sure, I would have baked some brownies and cupcakes or make chocolate covered strawberries, but other than that I would sit on my bed and just watch TV the whole day. All my friends would probably hang out with each other and drink and smoke or whatever they hell they do. I never really get invited to things.

But being alone has its perks as well.

Day -7 contd. : Talk To Me

I still haven't gotten used to this unit yet. It's different from peds. They don't have residence or med students doing rounds here which sucks. I enjoy the company of the residents. I don't feel as important as I thought I was going to be. I highly doubt I'll make any friends on this floor. Speaking of friends, all of mine are having the times of their lives right now. I wish I could join in on some of their fun. But I'm here and there's nothing I can do about that. I spent most of the day by myself except for the occasional nurse and tech visit. A Chaplin came to see me today and she was very lively and all around great to talk to. It would be nice if I could have someone to talk everyday that would just understand. It wouldn't even have to be about cancer stuff, it could be about food, or cameras, or traveling, just anything as long as it's talking. I guess you can say I do want attention but not attention from everyone. Just one or two people who actually want to talk because they want to know more about me, more behind all this cancer crap more than just that.

I don't know, all this loneliness and isolation has me desperate for human contact. I want to know that people actually care but whatever. Everytime someone walks by the door I get excited like a little puppy does when he sees his owners.

Day -7 (day minus seven)

I just started chemo two minutes ago. Now I know it's real. I'm not sure if it's a good or bad thing to start chemo on Friday the 13th haha.

The chemo that I start today is called Busuflan. I will be given a dose at 8am, 2pm, 8pm, and then 2am every day for the next four days. Each dose will run for about 2 hours each. Since this chemo can cause seizures (and which I am prone to) the nurse premedicated me with meds like ativan to prevent them. I also take a few other meds orally to prevent things such as fungi growing in my lungs, an antiemetic so I won't throw up a lot. A lot of what they do is for prevention. But if something does occur it's not at its worst because there was medicine there to hinder the effects of whatever it is.






The purpose of doing this round of chemo is to clear out my bone marrow for my transplant cells which I will receive next Friday. The reason why I can't just do round after round of chemo anymore is because with the chemo alone it is more likely that my cancer will come back again and if that happens it will be even harder to treat. So what the transplant does is give me all new cells that will make up an immune system and hopefully this new immune system will make the white blood cells correctly.

The bag that the chemo comes in a tiny bag with less than half of it filled.

Here are some pictures of my pole, Samson and the bags of meds which don't have names yet (Hmm maybe Delilah).

central line and sunset

Here are some pictures of the lumen catheter and a pretty sunset I saw today from my window. At least I have a nice view :)

Heart Racing First Day

Today has finally arrived. It's been somewhat eventful. When I arrived on the floor it was very... non Disney. I'm used to seeing lots of color and cartoon characters all over the place, but here it's different, just beige walls and a few Valentine's Day decorations. It's very quiet on the floor. I don't hear any babies or kids playing or screaming which is good and bad. I heard a lot of the same information by at least 4 different people. It seems okay so far.

I had to get a triple lumen catheter put in and it was very uncomfortable.The point of having one of these is to easily administer my treatment and medication. They didn't put me under anesthesia like they would with a port or a broviac. They numbed my neck with lidocaine which burned for awhile. Then they made a small incision to insert the catheter in. But when they did that I felt my heart start to race and the monitor I was hooked up to went crazy. They kept moving it up and down in my neck and I could feel it and the whole time my heart was beating so quickly I thought something terrible was going to happen. It turns out that it's supposed to be like, that's how they know that they have it in the right spot.
I'll post some pictures of it later. Right now my dressing is messed up.

I start chemo at 8 o'clock tomorrow morning and it will run for about six days. Next Friday will be the big transplant day.

The REAL Final Night at Home

I'm actually really excited about going tomorrow or maybe it's just my nerves. Don't get me wrong, it's not something I want to do ( I'd much rather go to Brazil, I hear it's Carnival time down there now) but I actually enjoy spending time with doctors/nurses/med students and having them feel me up at 7 in the morning. Plus it will be a nice scene change from the inside of my house. I'm excited about some of the potential drugs I may be receiving that will make me feel... happy :) (there goes the hidden addict in me). I can't really explain the feeling.


I keep thinking that I'm going to go there and see Sandor and joke around with him and stuff but then I remember that he's not (physically) here anymore. But he'll be with me, helping me fight and keeping my spirits up.

Remember that post about school work...

Today my guidance counselor told my brother that my mom should call her. Now there's only one reason why she'd say that and that reason being school work! I've been too busy concentrating on my self pity and not on my school work. As of right now I have five months worth of work to catch up on and there are only five months left of school. I don't know how I'm going to pull this off. I'm probably going to be held back :(.

Then again I am jumping to conclusions, right? There are other reasons why she would want my mom to call her right? If it were that important she would call my mom, right? I'm probably wrong.

Impatiently waiting....

So they sent me home... I don't know why. I'll be going back Thursday. I really hate driving there cause it's far. So For now I'm sitting home, nervously and impatiently waiting for Thursday to arrive. In the meanwhile I've found some things to make me laugh...

Sometimes...

Nothing's worth it. I know I sound ungrateful right now. But there are just days that aren't worth getting out of bed for. I'm usually the type of person to think that every day should be worth a sunrise and a sunset, but nowadays things have taken its toll emotionally and physically. This is not the way I imagined I'd feel days before chemo. I thought I'd have a "take on the world" attitude" and maybe I will once I start, but as for now, that's not the case. I just feel plain ole lousy. Like my life isn't worth these doctors and nurses time. Like it's not worth anyone's time. This is a lot different from when I was 11, a lot more emotion involved on my part. This is really my last chance to get rid of this stupid disease. The last resort. And I hate that it's come down to this. I hear a lot of people saying that they're having a "horrible day" or "the worst day of [your]life" but I don't think anyone has ever had a truly horrible day until they've been through what most cancer patients and their families go through (don't take it too literal). I could never talk to any of my friends about this. I don't think they'd get it 'cause to be honest, I don't fully get it. I don't understand why I get like this sometimes. Sometimes I just want to sleep forever because I don't feel anything and it's peaceful when I'm sleeping and I feel like time is standing still. I guess the thing that keeps me from downing my left over morphine is the fact that I know I'm lucky to be in my position, to still be alive. Things could have easily taken a dreadful turn for the worst but they didn't. And despite how I lousy I feel at some points, I know that if death were knocking at my door, I wouldn't let it in. I'd run. And if it caught me, I'd beg for my life. So I guess I know it's not my time, so I'll keep on trying to stay afloat.


But just sometimes...

Last Day Home

So today will probably be my last day home til March or even April. I'm going back to the hospital tomorrow. I'm getting some tests done and I guess they'll admit me from there. It's kind of nerve wrecking to think that this could be my last time I ever see my house again. Tonight my mom is going to take me out to dinner at the Cheesecake Factory (yummm). I hope it's not too packed there. I think I'm more calm than I should be. Or maybe it just hasn't hit me yet.

I think I'll be on the pediatric floor first and then transfer to adults. But it won't be the same without Sandor :/

Haha...

25 Thangs...

On facebook they have this "25 Random Facts" or something of that sort going around. I don't have enough friends that would care to read my 25 facts so I'll just do it on here because I'm bored and no one reads this anyway haha.

1. When I was younger I really wanted to be a veterinarian, but I'm allergic to a lot of animals, so I think I'll aim for a (human) doctor instead
   
2. I really enjoy learning about different cultures
3. I love juice (especially grape and cranberry juice...and lemonade)
   
4. I'm allergic to apple juice
5. I really don't like when people use the "n" word
   
6. I love grapes, mangoes and pineapples
   
7. I used to be really good at speaking spanish, but since I haven't been practicing I'm probably really bad now haha
   
8. I'm afraid I might become addicted to pain meds one day
   
9. I like to bake and I'm really good at it ( I think)
   
10. I have no talent at all. It's pathetic
    
11. I really enjoy volunteering and making people happy (that doesn't mean I'm a push over)
    
12. I get nervous about everything. Every small little thing
    
13. I love poodles and poodle mixes. One day I hope to own one
    
14. I don't care that I'm bald
15. Unlike most people my age, I enjoy spending time with my family
    
16. I'm afraid of the dark
    
17. I would love to be in Jamaica right now
18. I'm into photography and stuff
19. .... I really can't think of anything else. I'll finish this later

ok so back to this 25 things-thing.

19. I admire people who stand up for what they believe in (as long as that something is a good thing)
20. I go to this really cool camp (Camp Happy Times) every summer. I've met the most interesting people there and some of my best friends
21. I don't like when people force themselves to be different, it should just come naturally.
22. I do like pina coladas and getting caught in the rain (as long as my hair doesn't get messed up...not like I have to worry about that now)
23. I enjoy being in the hospital, but now being a patient there
24. I hate cancer
25. I'm going to kick it's ass...again


That wasn't as bad as I thought it was going to be. I'll probably do another one if I get bored again haha.


Guess what. "What?"
MY NEW CELLS CAME TODAY! Yayyyy. Well I think they came today. They should have come today. I'm going back to my second home (Robert Wood) on Monday for a MUGA scan and a pulmonary function test and hopefully I'll be admitted from there 'cause I don't feel like driving there twice in one week. I live like an hour away from the hospital so it's a pain in the ass to drive there.

I finished reading Adrian Sudbury's blog. Well not all of it but up until his passing. He was such a wonderful person who really wanted to make a difference. I would have love to meet him. There need to be more people like him in the world.

My mom called the transplant people (just in case they forgot about me haha). They said that my new cells should be coming on Thursday. So I guess I'll be going in next week for tests and stuff and then be admitted from there. I really hate this waiting thing. I'm not that good at it. It's like waiting for something catastrophic to happen and you just want to get it over and done with, with the best possible outcome of course.

Rantings: If it's one thing I can't stand the most...

...it would have to be ignorant people. People who are just utterly disrespectful and have no scruples whatsoever. They really piss me off and make me feel ashamed to be a damn human. I really try to have an opened mind with everyone I encounter but it's so hard when THEY'RE JUST SO DAMN PRIMITIVE AND NESCIENT!!!
Now I'm not saying that I'm the most well rounded person in the world but I have manners and I know what's crossing the line and what's not. I know what to say around a certain crowd and what not to say. MANY people do not have these basic, necessary skills!


I needed to get that off my chest.