Attempt Number Two

Today I had my second transplant since the first one failed. I had to go through five days of chemo and a day of radiation. The radiation killed my skin it looks and feels weird. I really really really hope these new cells engraft without any complications. This time they used two separate donors to guarantee engraftment I guess. Let's hope it does.

About a half hour ago I fainted. It was really scary because I was in the middle of throwing up. Thank God my mom was there to call for help. When I regained conscious I didn't really remember anything except for asking my mom for a bucket because I knew I was going to vomit. They're not sure if I had seizure or if when I was vomiting I pressed on a certain nerve.

Hopefully I will stay infection free until my counts recover. So I should be home by mid-May... yup around prom time. But my twin brother is going so I'm going to take pictures for me.

Day 40; Two days til failure

Unfortunately, my new cells have not engrafted yet and it's passed the date that most transplantees engraft. So lucky me, I'm part of the 5% who's transplant failed. The next idea is one that I am not a fan of; more chemo, radiation, and other transplant. The doctors said that by day 42 the transplant is considered. I really with all my will and heart don't want to this! I've been here since Feb 12th. I'm really tired of all the shit. What makes it worse is that I'm most likely going to be here for my mommy's birthday.

But the important part is that I made it this far. Hopefully I'll be able to make into remission.

Day +31; Big Upset

You know how I've been waiting, waiting and WAITING for my counts to come up? Well yesterday my nurse rushed into my room and showed me my blood work, my wbc was at a shocking 2.1! I quickly texted my mom who told everyone else. I didn't want to say anything because I had a slight doubt that it would come down today. That doubt was confirmed today after the doctors did their rounds on me. One of the fellows walked in my room and explained to me that my blood got confused with other patients in the lab. They think it was probably a labeling mistake. I'm really upset today and so are my mom and dad. It's really frustrating when things like this happen.

I still have this black rash thing on my legs and it's spreading to my thighs and arms and it's very painful at times and extremely creepy that it makes my skin crawl.( I'll have pictures of all these things once I feel up to it). The doctors took a biopsy of it but since I have no cells they weren't able to tell what is. They think once my counts come back up it will go away. I really hope so because it's creeping me the hell out.

Day +29

I'm supposed to be going home soon but since my counts haven't budge, that dream is out of the picture. I had a bone marrow biopsy on Thursday. The doctors said they didn't see any leukemia cells but there really are no cells there at all. They also said that it takes longer, up to day 35, for cord blood transplant to engraft. Besides that I've been running fevers all week. Almost everyday day I've gotten blood and platelet transfusions. My eyes are completely blood shot. Before there were just little spots of blood on the sides but now blood is everywhere. I have scabs or little spots in random places. I have no idea what's going on with my body.

I recently learned that my friend from peds passed away. Her name is Jasmine, she was only 11. She was at the end of her treatment when everything went wrong too. She always wanted to play with my camera cause she had nothing else to do sine she was alone most of the time. It's so weird because she's so young. I was 11 when I was first diagnosed with AML.
R.I.P. Jasmine

Day +23

It's been almost a month since I got chemo and my transplant and my counts still haven't recovered. It's around this time when my new cells should start to engraft and so far nothing. My white blood cell count hasn't gone up passed .3. Today it's at .2. And to make matters worse I'm spiking fevers. If my counts don't come up by sometime this week then the doctors are going to give me medication that will help stimulate my bone marrow to make more cells.


On Wednesday I had a really bad nose bleed due to my low platelet count. It lasted for a good 2 hours to the point where I started to feel light headed. They had to get the ENT doctor (Ears, Nose and Throat) to pack my nose to stop the bleed, which was NOT a comfortable or painless procedure.

I'm really worried that my new cells won't engraft and that I'll be left with no immune system but I'll try not to let it get the best of me.

Day +17

Remember how I ended yesterday's post with "sponge bath time?" Well while I was sponge bathing the stupid cleaner walked in on me after I yelled "HOLD ON I'M BATHING." He wasn't the normal cleaner that's usually here, he's what we call a "float." He barely knocked and just barged in. I was really pissed and felt very violated. I'm not sure how much of me he saw but the point is he had no courtesy or respect for my privacy. When I was done bathing my nurse and I walked around the unit while the cleaner cleaned my room. When I got back it looked like my room was barely touched. My bed was unmade and there was still stuff on the floor. This didn't make me any happier. Being sanitary and sterile is a huge part of my treatment and me getting better and for someone to jeopardize that for me because of pure laziness really makes me angry. I know it might not seem like a big deal to you, but it is to me. I really just want my damn privacy and to get better.

Anyway. Today is a little better because my mom is spending the day with me, so I'm not alone and I can boss her around :D.

I'm starting to get back some of my energy back but I still feel miserable and somewhat depressed. But hopefully, with time, those feelings will disappear as well.

Day +16

The sores in my mouth and throat are getting better. But new problems have arose; I've lost or I'm losing my voice. I don't know how this is happening! It's not like I've been talking a lot but it's better than my throat constantly killing me. My counts are still down and I'm still miserable. One of the hardest things to deal with is being alone for most of the day. My mom and dad are at work during the day so they usually come at night so I'm stuck with the nurses and techs and annoying people just barging in my room all day. I would love it if my mom could stay with me all day. It would make everything so much easier and I'd feel more comfortable.

I still don't want any visitors because I'm just not in the mood for them. I look a hot mess and feel crummy so I don't think I'd be able to enjoy any one's company right now and I don't want people to waste their time on me.

I think it was Senior Bowling Night last night. I hope everyone had fun. I'm not sure if I said this already but I feel like my life is standing still and all my friend's lives are just moving on without me while I'm stuck here in a hospital bed. What makes it even worse is that I probably won't see any of them again since I won't be attending school or any school functions for the rest of the year.

I'll touch more on this subject later. Sponge bath time.

Day +15: Happy Birthday Kelly

Happy 19th Kelly!!!
For those of you who don't know, Kelly is my best friend/wife. We've been friends for about five years, and what fun years they've been. She's always been there for me and I know she always will be. Her and her family have been nothing short of amazing to me. They're like my second family.

I can't imagine my life without her. When I got sick again she made sure that she would always see me every weekend no matter what. I feel like I'll never be able to repay her for all the joy she's brought to my life.

I'm really sad that I won't be able to celebrate her birthday with her today. She usually has some crazy get together with her crazy friends and I watch them do stupid stuff. I'll make it up to her though once I get out. Maybe take her out to a romantic dinner and lavish with all the jewels and candy corn her little heart can handle; Because that's what wifey's do for each other.

Kelly, I hope you a wonderfulllll birthday today! I love you!

Day +14

I find myself feeling very miserable nowadays. I have no privacy at all here. People are always walking in and out of my room asking me the same damn questions, waking me up from my precious sleep. Everyone keeps putting their two cents in on what I should do to make myself feel better such "read a book" and "do this so this won't happen" and I understand that they're trying to help and all but I just don't feel like hearing it and half the stuff they're telling me I already know.

I even had to go as far as to ask for one of techs to be removed from my case because I really didn't feel comfortable with him in my room. I know, I'm miserable.

I'm becoming very forgetful as well. I never know what day it is. Sometimes I wake up thinking I'm somewhere else, like my mom's room or something. I can't tell events apart like whether or not something happened yesterday or today.

My WBC count is back down. It went from .1 to .2 to .3 and back to .1 ( in order for me to go home my WBC count has to be between 4.0-10.0 [thousand] so according to my blood work chemistry I only have 100 WBC). So I still have a long way to go. The doctors said it takes longer for counts to recover when you have a cord blood transplant.

Hopefully I'll be home by the end of March or early April.

Sorry if there are any grammar errors, I'm really drugged right now.

Just a small update

I'm still really weak and tired. They discovered that I have a staff infection which really isn't good. I have to get a new line in because of the infection, so this will be my third one. They started me on a really strong antibiotic called vancomycin (it's heavy duty stuff).

I still can't talk or eat or drink anything cause of the sores in my mouth and throat. The doctors keep saying "just a few more days" but a day in this state feels like an eternity.

I just keep in mind that while things are bad they could always be worse.

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.

Old School

As you know, I haven't been in school for quite some time. I only attended two days of school. I'm supposed to be stressing over college and stuff but instead I'm stressing over whether or not I'll be alive in a month's time. I will most likely not be returning for the rest of the year, but that doesn't mean that I don't have to do work. I've been tying to catch up on my own but it's so hard when I have no structure. I was once a disciplined student but nowadays I can barely concentrate. I'm unbelievably behind and I know most of that is my fault. Whenever I'm at the hospital I make sure that I meet with the tutor and do at least an hour worth of work. But when I'm home it's a different story. Anytime my mind even travels near the thought of picking up a pencil and doing work I start to think of school, then the friends I had at school and how I won't be returning and everything I'm missing and then I just can't concentrate. It's a vicious thing. I wouldn't be surprised if they held me back. I can understand if my teachers are disappointed in me. Hell, I know I'm disappointed in me. I've been slacking because I can't get over my situation, which really isn't an excuse I guess. I just wish I was the same student I was in the years before this. I hope this cancer bullshit doesn't hinder me academically anymore than it already has. It's bad enough I'll have to take a year or so off from school and my activities. So that means no college for me til I get the ok from the docs (which really irks me). My plans are to become a doctor and it's a long road in itself and I don't feel like being held back to make that process any longer than it has to be. To my mom it might seem like I don't care about my school work but I actually really do, it's really all I have to get into college since I don't play any sports or play an instrument. I know, I'm quite talentless :(

In other news:
The docs still haven't called so I have no idea on when I'm going back in.

I've continued reading Adrian Sudbury's blog, which is soooooo amazing. I'll blog about it more when I'm done reading it. But he's such a sweetheart. It's ashame that we lose people like that.

Anyway, I took some percocet just for the hell of it (I'm not a druggie, I'm not a druggie!) and It's almost kicking in. Don't worry, it won't become a habit. I still have at least half a bottle left and lotssss more morphine...that won't be touched...unless it absolutely needs to be.

Miss You

I really miss you Sandor. I'm sorry I couldn't make it to your funeral today but trust me I was still thinking about you every second of the day. I found this picture of me, you, my mom and your mom from the Christmas party that the photographer took. I remember you wanted me to watch you play some game on your xBox that you got from the party haha.

I don't know why people keep saying you're in a better place and that you're happier. I have no doubt that you're in a good place, but knowing you, you'd most likely still want to be here with all your friends and your family. You were supposed to get better and kick the shit out of cancer This is where you belong. But nonetheless I hope you're doing well. Miss you :)

My idea

Before I relapsed I did a lot of advocacy work with the ACS and other organizations to help spread awareness of cancer and ways people could help. When/If I get better I would love to get right back on doing that. But this time I would like to spread the word about donating blood products (blood, platelets, marrow) and the importance of this. I know I've talked about it in other posts but I just want to elaborate a little more.

I would like to talk more with children, as I did before, around the ages of 11-18. I know that some might think that 11 is too young to be learning about stuff like cancer, but it's never too young, plus I was forced to learn about it when I was diagnosed at that age. The point wouldn't be to scar them or anything but just to inform them that it is real. I can't tell you how many ignorant people there are out there who think that cancer is a myth. It's extremely real for me.

I'm no doctor but I figure that I can do a pretty good job of explaining what my disease is and how it effects my every day life, from there I'd go into the importance that blood products played in my treatment. I guess I'd give out a survey before hand to see how much they actually know about to topic. I know that not everyone would pay attention or care, but if I could get at least 3% of those kids to get involved then I've accomplished something.

I've been selfish

Most of the time I've been thinking about how this whole thing has been hard on me, and I've left out the most important aspect of this. It not only effects me but my family. Not only did I not do anything to deserve this but neither did my family. I can tell every time my mom looks at me she treats it as the last time she'll ever see me alive. At the beginning of my treatment all I could think was that "I can't leave her." I really can't. My mom has lost too many people who were very close to her. I can tell my dad has been really trying to be there for me as awkward as it is sometimes. I would feel like a selfish ass if I were to go. I know I can't control it but I also can't help feeling that way. I feel like I've somewhat put a strain on my family and that's the last thing I'd ever want to do. The only good thing about me being the sick one is exactly that, it's me, not them.

Check it out...

http://www.marrow.org/HELP/Involve_Your_Organization/Host_A_Donor_Drive/index.html

I figured since I keep urging people to help out and get involved that I should lead you in the right direction. Please check it out. This is the type of stuff that is saving my life and would have saved Sandor's and many others. If you're interested in helping me out or getting one started please let me know.

my email: alyssadouglas@ymail.com

Hey Sandor...

Your funeral is Thursday. I would love to go but I don't know if i can make it there . I promise I'm going to do my best to try to make it. I keep thinking it's going to be odd to be there since I won't know anyone, but I honestly don't care too much. Plus, I was thinking about bringing my friend Kelly, ya know, the "Sexy bitch" you fell in love with hahaha.

I would give anything for things to be different right now. Even though you're still "here" with us, we all still want you physically here, and yes, it's because you're "sexy" haha. I hope you know how much you impacted everyone's life. I'm sure even the nurses at doctors back at Robert Wood and shaken up. I'm nervous about going back since you won't be there. I'll be bored to bits and pieces. It will be so quiet on the floor. I won't hear you laughing from across the hall. I'm so happy I got to bound with you when I did. You give me something to look forward to. If I don't make it, I'll be up there with you and that's what makes everything okay for me. Thank god I didn't listen to everyone when they said you're a bad influence and that you'll corrupt my mind! Haha. I think I did more damage to your mind than you did to me! haha

I miss you dearly <3

Adrian Sudbury...

I've been watching this guy's video diaries over and over again and like the stalker I am I stumbled across his blog. I've been reading it and he's such an amazing person. Actually he's more than amazing, he's epic (like Sandor :-]). Adrian Sudbury was diagnosed with two types of leukemia, went through chemo and total body irradiation and a transplant, unfortunately that was not enough to rid him of his rare disease. He passed away sometime last year. Like myself, he also wanted the world to know the importance of being aware of leukemia and bone marrow donating. While reading his blog I realized that my biggest fear isn't dying, my biggest fear is that my dreams and wishes will be forgotten and unfulfilled . Adrian Sudbury inspired so many people to get involved and thanks to him I'm sure plenty of lives will be saved. He had a long lasting impact on the world, and that's what I would love to achieve. His story really touches me. I would love to have just a fraction of the charisma that he had. Since the 8th grade I've been trying viciously to get people involved, but it's so hard sometimes. The main reason is because many people are uneducated about the topic, hence why I gave numerous speeches trying to inform my peers. But I guess it's different when you go through It or have a close one that has gone through It. But I'll never stop trying. Even when I'm gone I'll still be fighting and I hope you will be too. To keep my memory alive, Sandor's memory alive, my uncles memories, Diya's memory, Selvin's memory and the memories of many more and the dream we all have to get rid of this monster. It has to stop. It doesn't deserve to take another life.


http://baldyblog.freshblogs.co.uk/

There aren't enough people out there who are informed about bone marrow transplants and that needs to be changed.

I want to set up a drive. And I'm going to. Just thought I'd say that.
Here's a little video I want to share with you.
http://www.youtube.com/watch?v=5YODjoQnH9g

I'm part of that 16,000( that's just too many people. too many moms,dads, brothers, sisters, and friends, too many). But luckily for me I found a match with cord blood. Lets hope it works.

It's way more important than you'll ever comprehend. Just get involved damnit.

The "me" in "Team"

I'm kind of disappointment with my Relay team. I feel like every one's waiting for me to just spring up and start doing everything and ordering everyone around, not like they'd listen anyway. I don't know, if my one of my friends were in my position then I'd do any and everything to be raising funds for their cause. I know I'm not the center of their world but it would be nice to think that me having cancer again would motivate my team to work extra hard and raise some damn money. But whatever. I probably won't be able to go to Relay this year. I was really looking forward to going this year too since last year it got rained out after all that hard work. I feel so horrible because I'm supposed to be participating in this program called "Heroes of Hope" for cancer patients/survivors who have really made a difference. I was accepted into it but I can't even do half the stuff I'm supposed to be doing cause I'm sick. I really hate using this as an excuse, but it's true. I hope the ACS understands. If I get through treatment I'll be sure to raise as much money as I can for Relay, even if it is by myself.

http://www.localsource.com/articles/2008/07/09/west_orange/news/local_news/doc48755a267afe4209456985.txt

Stay positive...

Ugh. It's just so hard. I never realized how hard this shit could be. I'm so used to being happy and positive. And I pretend to keep my cool around others but inside I'm just a wreck. It's so hard to think and speak sometimes because my mind is in a different universe, one that I want to escape from so badly, but I can't. Things could be worse, and I know that and I'm lucky they aren't, but it's still hard to stay positive sometimes. People keep telling me to be but until they've walked in my shoes and have felt the shit my body has gone through, then they will never know the constant battle it is to stay positive. Sometimes it's easier than others. Sometimes it's just natural. But times like this, when you lose one of the only people you could relate to and you're hearing all this shit from doctors and you feel like it's the end, that's the time when my mind is raging a war between self destruction and positivity. I don't let others see this Alyssa. The Alyssa that has already given up. The one that just doesn't want to deal with this anymore. That Alyssa will never raise to the surface until Hell freezes over and the earth is ruled by chaotic monkeys. That part of me is mine and mine alone to be dealt with.

To those who are struggling with cancer it's ok to feel like shit. Don't feel like you always have to be positive, that's a myth. I think feeling like shit helps because once you get back on your horse you feel 10 times better than you did before. Just know you're always! always going to bounce back. It's programmed in us :) Just stick to your morals and beliefs, cause only you and you alone know what you're going through at this moment.

Running away...

I woke up feeling worse than I did yesterday. I can't help but feel that I'm next. Seems like everything is foreshadowing my demise. I keep jumping all over the five stages of grief/death. One minute I'm angry, the next minute I jump a few stages and I accept it for what it is and the next I'm denying everything saying "why me?" Honestly, what the fuck did I do to be stuck with this rotten disease? During my five years and 11 months of remission I did everything right, at least I think so. I didn't touch drugs or alcohol and I stayed out of trouble and It still comes back? Now I'm really losing faith. I'm back at stage 2; anger. But then again, sometimes I do think it's my fault It came back. There were some days when I questioned my survivorship and maybe that's why I'm being punished again.

I'm trying to prepare myself for the worst, but that's easier said than done. I would love to have an open mind on things, but it's so hard when all the odds are against you. There are too many things that can go wrong. I'm not even sure if my body can handle anymore chemo. This next round is probably going to be the roughest round I've ever had. It has to get rid of all my marrow. (It kind of sucks to think that my marrow isn't good enough for me, it makes me feel belittled) It has crossed my mind many of times to withdrawal from treatment and just run away. But that would be choosing the easy way out and giving up. And who am I to give up when there are people who die trying to survive.

I want him back so badly. I never stopped thinking about how he was doing ever since he went into intensive care. It seems like cancer always finds a way to fuck everything up. I found a friend who was going through the exact thing I'm going through, who I can lean on and just chill with and now that's been snatched away, just like everything else in my life. Two nights ago I was praying that God would give him strength or luck or just anything to get into remission and get a donor for his transplant and nothing. Nothing at all. He was too young. And that's just wrong. I know that "life isn't fair" and all that shit but that's beyond not being fair, that's just cruel and disgusting that he'd have to go through all that shit and not even make it out alive. He brought joy to so many lives and yet his gets taken away??? There are other people who deserve to not be here and the ones that do are always the first to go. That's fucked up. It's not right that anyone, especially the youth, should have to suffer through shit like cancer. My heart really goes out to your family and friends, Sandor. They still need you. I still need you. We'll never stop needing you. You're such an irreplaceable soul. I keep hoping that this was a mistake or some mean joke you're playing. Please let it be a joke. I promise no one will be mad. Just come back, please, come back.

R.I.P. Sandor

Dear Sandor,
I honestly don't know where to begin. I'm so glad I got to met you when I did. You made being in the hospital actually fun and worthwhile. You're so funny and crazy and you always made me laugh. You really didn't deserve this. You're such a strong person no matter what. My favorite memory with you was when I was in your room and one of the nurses and the resident came and you bitched at them. That's what I love about you, always willing to speak your mind :p. To me, you'll never be gone or forgotten. I'll always remember you as that crazy kid in the room across from me that would always make a lot of noise while I was trying to sleep. You'll be my strength and my reason to keep fighting throughout the rest of my treatment. I love you buddy<3


This sounds stupid but I typed it in green since you love the Eagles and they wear green.

pictures from our make shift photo shoot

bloody nightmare.

Today's visit with my peds oncologist was a little better. I really like going to her. She makes everything feel okay. But that was interrupted when one of the transplant doctors came for my consent forms. These forms are scarier than Stephen King movies. But anyway. They drew about 18 vials of blood from me! I was so scared! Haha. At first I thought they wouldn't be able to find a vein but they did! And in one stick at that! I felt lightheaded and shaky afterwards but I got juice and animal crackers! :D.

I asked about my friend who's in intense care and he's still there unfortunately. I really hope gets through this. It's just not fair. They'll keep me posted on what's going on with him though.

calm before the storm...

Well I just got back from my first visit with the transplant doctor, and holy shit, was it depressing. Before I went there I somewhat knew what I was in for but obviously I didn't. I'm still doing another round of high dose chemo. The way she was describing it, it didn't sound like a walk in the park. IF I make it through the round of chemo they'll proceed with the transplant. My doctor told me that I'll be the about 6th person in the hospital to have the type of transplant I'm having (I'm having a stem cell transplant as opposed to the actual marrow from another person). My new immune system is coming from a cute lil baby, their cord blood. She mentioned the two tricky things about it, which I kind of forgot. It was just so much information to take in. She was sure to mention all the scary shit that can and most likely will happen. And she also mentioned that I will most likely be infertile after my transplant, which I guess I don't mind, at least for now :/. The other alternative is to do this clinical trial thing at Johns Hopkins. As much as I would love to go there that would just be too much for my family. I guess I'm officially out of pediatrics. For now on I'll be on the adult floor. I feel like now I'm really forced to grow up and take responsibility for my actions (and I'm far from ready to do that). For the next few months to years I won't be able to live the life that most young people live and the life I saw for myself, but se la vie right? Right. I know that some people are going to try to "cheer me up," and some have already tried but as much as i appreciate it, it really doesn't work. I don't enjoy people sugarcoating things to make me feel better, I really don't. It is what it is.

I still feel like I have no one to turn to. I feel it's a waste of time trying to connect with some people when they really just won't get it at all. Not even the least bit. But whatever.

So I'm going back to the clinic again tomorrow to see my lovely oncologist and hopefully she might make me feel better. And that's another thing. I've known my current oncologist now for about 7 years and I know she's good at what she does, but now I have to try to trust these new adult doctors with my life...

I'm supposed to get chemo and stuff in about another week or two. They're "giving me next week off." So right now I'm relaxing while I can. Suddenly I don't feel as confident as I did before about this. That calmness and excitement is quickly turning into nervousness and doubt.

I can't sleep

It's one something in the morning and I really can't sleep. I was going to take some percocet just to take the edge off and to make me feel good. But I realized that's probably how addicts start and I have enough problems as it is, I don't need to add that to the list haha. I tried to sort out some of my clothes in my room but I QUICKLY got bored with that! :)

I don't know, my mind's on overdrive right now. I keep thinking about everything... like everything, it's ridiculous. Everything from when I was 11 and not really understanding anything, to back in August and September with the stupid doctors saying I was crazy, to all the painful, sleepless nights I had and to now, 18, still not understanding anything except that "this can make you better, but it can also kill you." And in the mist of all this ( I don't mean to sound cliche/"emo"/melancholia) I feel isolated and disconnect from most of my " friends." It's senior year so most of them are focused on college and that fun stuff so they've forgotten about me( expect for a few who I am forever thankful for). I know if one them were in my shoes I'd, hmm I don't know, call them?text them? once in awhile to make sure they're still alive. But whatever, it's not like I'll see most of them again. I wish there was a way that I could talk to someone who has actually been through this (specifically the BMT). There's this kid at the hospital I befriended who I would talk to but he's not doing too well right. I really want him to get better, it's been too long. I find that a lot of the doctors make good friends... a lot better than some of the ones I have now. Harsh? I know. But it's true, even though sometimes they're too busy to remember your name haha. I guess that's why I found it somewhat difficult to leave the hospital. After spending so much time there you get oddly accustomed to the routine, and as much as you're dying to go home, you're still nervous and unsure...well at least I was.
I guess I never really realized how emotionally taxing this shit could be. I tried not to give myself time to analyze things cause I've learned it just gets me into trouble. Now I just feel like a brat complaining. Anyway... new topic...

I'm listening to Gym Class Heroes right now (Kid Nothing By vs. Echo F), some of their old stuff. They're one of my favorite artists. Speaking of, I really hope they're at Bamboozle this year and hell, I hope I can go! I'm going to beg, beg, beg for VIP tickets, 'cause I don't feel like roughing it with the crowd this time! Haha. I know, I'm a punk. I'm still no more tired than when I began this post lol. Ahh where's my morphine when I need it.

Feels good...

Ahhh, it feels good to have a new president. Today was really cool getting to witness history and being apart of it. Seeing Obama sworn in was just as pleasant as voting for him :). Hopefully American will "pick itself up and and dust off" cause we really need to in every aspect, we've already done so by putting the right man in office! Woohoo!

Speaking of new... I get new cells soon! I'm not sure the exact date of my transplant but it's going to be soon since I'm not doing the second round of chemo anymore. I was on youtube last night looking at people's stories and experiences with BMTs... a lot of them weren't too pleasant... actually none of them were too pleasant. Some complained a lot about the nausea and the fatigue, some developed CGVHD(chronic graft vs. host disease). But every one's different so I can't really go off of their stories, which sucks because I have no idea of what to expect and I want answers that my doctors can't give me. All I know is that I don't think I can handle anymore vomiting, I'm seriously traumatized vomiting so much haha. But nonetheless I'm still excited just to know that the BMT will decrease the chances of my cancer coming back again, and I think that's worth all the nausea and vomiting in the world. I have a good feeling about it too (I'm not sure if it's my naivety or optimism or maybe a combination? lol). I was debating on whether or not I should set up video diaries but I figured that no one wants to see my face and bald head (which is growing back some hair!!! yayyyy!!!). I don't know maybe when I start my transplant. It's not like anyone reads this or will even watch my videos, but it would be for me to look back and say "heyyyy! I looked pretty good with no hair!"

Anyway, I'm going to catch up on some school work... or just watch some junky TV :p

my bucket list... minus the bucket

So I'm almost healed from my surgery. The percocet helps a lot :). I took of my snowman and three hearts off, even though they were really cool haha. My doctor called and said that we're going to skip the second round of chemo and just go straight to transplant, which is good, is some ways. I'd feel safer doing another round of chemo just to make sure that there's nothing left to grow back. Butttt I trust my lovely doctor she saved me once so I'm sure she can do it again.

I just finished watching the Bucket List. It got me thinking of a lot of the things I would like to do. I'm not saying that I think I'm going to die soon, I feel pretty confident that I'm going to make it out alive... again. So here's a few things I'd wish to do with my life:
1. GO TO BRASILLLLLL- I know it was so predictable of me :)
2. Go to Peru/Domican Republic/Costa Rica/Turks and Caicos and a lot of other places
3. Make a difference in if not one, then many lives
4. Save a life
5. Be on TV
6. Have a published book
7. Start my own foundation... a couple of foundations
8. Doctor
9. Buy/build my dream house
10. Repay my mother for all she's done for me
11. puppy!

'll work on adding more to my list :)

a snowman and three hearts...

I had my gallbladder taken out on Thursday (the 8th). It was quite an experience. I got to be sedated via gas mask and let me just say... it was the greatest thing in the world. I felt so good and relaxed. Everything was in slow motion and I can feel myself actually being put to sleep. Too bad that great feeling didn't last when I woke up. Gosh it felt like I was hit by a truck. I had bruises and IV needle punctures all over my arms cause they couldn't find a vein. If I didn't know any better I would say they beat me up. The surgeon was such a character. Instead of regular gauze bandages he made them into little shapes. I had a snowman on my belly button, and three hearts where he made the other insertions.

They also did a bilateral bone marrow biopsy so I should have the results of that by tuesday. Depending on what they saw I'll either do another round of chemo or just go straight to transplant.

oh nineeee...

Ahh, I graduate this year. :)
I still haven't been back to school and I won't be able to go back at all but whatever. It doesn't bother me as much as i thought it would. Sure I'm missing out on all the cool senior stuff but I'm also getting a whole different experience at the same time, it's not always a pleasant experience but nonetheless an experience in itself. So it's a give and take type thing.

I didn't start treatment til November 11th-ish. It wasn't as bad as I thought it was going to be. I developed pancreatitis and couldn't eat for about three or four weeks. Yeah, Thanksgiving wasn't that fun haha. I was feverish for the first week or so which was probably the worst part. I felt so shitty and one of the nurse practitioners wanted me to get up and walk and oy vey... it was a pain. But I know she was just looking out for the best of me. Day by day I started feeling myself again. By the first week of December I was full blown me again and it felt good.

The doctors and nurses there are pretty chill and laid back. Some are crazier than others but you learn to love it. It's really easy to get along with most of the residents. A lot of them will make really great doctor, doctors one day, you know what I mean haha. I would say who my favorites are but I don't want anyone to get jealous.

The plan for the rest of my treatment goes as followed:
Bone marrow biopsy/Surgery (getting rid of the gallbladder) on Thursday
Chemo sometime after that
then the big one... the Transplant....can't wait....no really, I can't. As much as I love being with the docs and nurses, I really just want to get on with my life and get better and get back into the swing of things. I know my life won't be the same after treatment and I'm prepared for that. I just want to be done!...and alive!