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!