Downward spiral…

Sorry I have not written sooner. Things have gone from bad to worse with me. After my bone marrow biopsy I was in so much pain I had to go to the Emergency Room and get pain medicine as well as stay there for the night until they got the dose under control. Then Friday I went to the zoo to walk around a little bit, but I fell and hit my head, and again I went to the ER where they found out that I had a concussion. Then that night, the worst thing since I arrived in Texas happened. I do not remember much of this, but I will start from where I do remember and then finish with what I am told by others. I was on my bed playing a computer game with my boyfriend, and skyping with him at the same time. He lost his internet connection (and now comes the part that I don’t remember) He turned on his skype again but I wasn’t accepting his call. My character in the game was in the same place that I left it in, and then he started to worry. He called my cell phone a hundred times, and then he really started to worry. He called the front desk of the hotel and told them what happened and asked them if they could send someone up to my room to knock on the door and check on me. The woman at the front desk and someone from security went upstairs. They apparently knocked on the door several times and got no response so they used the master key and went inside. They found me laying on the floor unconscious, and I wasn’t responsive. I was breathing, but I wouldn’t open my eyes and I wasn’t moving. They called my boyfriend from my room, and they told him they are rushing me to the cancer centers emergency room. My boyfriend took the next flight out to Houston. I didn’t wake up for several hours. In fact, I didn’t wake up until after Brandon was there for a few hours. I at first didn’t recognize him, and I was very confused. I had no idea what happened. To this day nobody knows what happened, but I have to speak with my doctor when I see him Tuesday about this. Until then, many of the patients at the hotel (the hotel is only for MD Anderson patients and their families) are to check on me, the front desk periodically calls my room, and security knocks on my door during their rounds. They want me unattended as least as possible. I guess it is a good that I don’t remember what happened. There’s still no explanation and hopefully my doctor can figure out why it happened, and hopefully it doesn’t happen again.To make matters worse, I found out that they want me to stay here a long time and I don’t have the money for it. MD Anderson does most of the treatments as an outpatient because being an inpatient people tend to get sick more often, and when you have low to no immune system the last thing you want to do is get sick. People often die from infections more so then they do of the actual cancer. They need to use aggressive chemotherapy with me (I have stage 3,  pending what my bone marrow shows then I may have stage 4) and in conjunction with the chemotherapy they need to use a special drug called ABH. It makes the chemotherapy more successful, as well as decreases the side effects. The only thing is, it is only allowed to be used here in MD Anderson. MD Anderson is the only facility cleared to use it because they create and manufacture it themselves, and own the patent to it and no other facility is allowed to use it. So even if I wanted to go back home I couldn’t because no other hospital would be able to treat me the way I need. It is a double edged sword, one side I will be home and happy with my family and have more money to use on other medical bills, but on the other side is I have a better chance at getting better and beating this cancer, but I don’t have enough money to stay here. I know I need to stay here, but I need to raise more money. If anyone out there can help me please do. I need to beat this thing. I don’t want to die.

Day 1.

Where do I start… Today was pretty rough and I don’t want to get into any details because I am still trying to make sense of today and handle it myself before I tell anyone else what’s going on. I don’t know what to do. I hate being here. I want to go home, I don’t want to be sick, and there are one people in my life that would try to be a little more compassionate about what I am going through. Even tho there are so many people behind me I still feel so alone. I am going through one of the hardest times in my life so far, and even though everyone says to stay positive and keep my head up, it’s really hard to. I feel so isolated. I am also so angry right now. I’m mad at my body, I am mad at myself, I am mad that certain people in my life aren’t doing what they should be doing, I am mad I am so far from home, I am mad that I am going to be going through this alone… Basically I am mad at a lot of things. Everything about this situation sucks. All I’ve wanted to do today was cry, and sometimes I did just that. I just don’t know what to do or how to handle this. One thing I have learned is that  in situations like this you really get to see people for who they really are, and not who you made them out to be in your head, and trust me that is a really shitty feeling. I don’t know what I’m going to do anymore. Some people need to grow up and start acting like an adult.  They make a tough situation worse, and cause more stress on an already stressful situation. I know life doesn’t always go the way you want it to, but what do you do when it never goes your way?

Sorry I haven’t posted in a few days. Things got kind of hectic and I had a bunch of doctor visits with a visit to RWJ. Now that things have settled down I can finally post. Things are going excellent in the fundraiser aspect. I am up to $3,895.00. I am in shock. I can’t believe this many people cared. I received my confirmation e-mail for my trip. I haven’t been able to pay for the flight or hotel yet because I am still waiting on funds, and probably won’t be able to do that for another week and a half. Prices are still pretty low so I am hoping they won’t change much. I finally sad the profile on my doctor, and he seems to have had quite the career. I m really hopeful that he will be able to cure me. Now back to the fundraising. My friend Deanna is doing such an amazing job. I don’t know what I would do without her. She’s been devoting so much time and effort, and getting so many people involved.. She’s my angel, and I don’t know how I will be able to repay her. She even organized a fundraiser for me May 4th with the help from my friend Amanda. I still can’t believe how many people are coming together to support me. Its like a dream. I never knew this many people cared. Now I am determined to get better so I don’t let anyone down! I really am truly blessed.

wow.

I just checked my donation page and saw that I am up to 800 dollars. I am in complete shock and disbelief. I even started crying, especially when I thought about a lot of people must really care about me. Throughout this whole ordeal I have been trying my best to stay positive. It gets really hard, sometimes I get sad and cry because I don’t know what my future holds, other times I get angry because  I don’t understand why this happened to me or what did I do wrong to deserve this. I just get so frustrated and I feel so alone at times. The fact that so many people, some I don’t even know are donating to help me get better… I can’t even begin to put into words how grateful I am. So many people are reaching out to me, giving me really helpful information, sending me links to other programs that may be able to help me… Just a lot of support. It really does mean the world to me. I would never wish this upon anyone, it will probably be the hardest thing (I hope) I ever have to go through. I am still in shock as to how many people have reached out to help me. You guys are making me stronger, and I really do feel as if I am no longer fighting this alone. I have put my faith in God to get me through this, and having everyone there for me… I can’t express my gratitude enough. I am no longer  fighting to get better just for me now. I am fighting of my family, my friends, and everyone who has supported me along the way. I haven’t figured out a way to thank everyone properly, because I feel that a simple thank you isn’t good enough for you guys. I have also decided that since so many people are helping me I am going to help others too. If it comes down to me loosing my hair, before it happens I am going to cut it all off myself and donate it to locks of love. It’s the least I can do to pass on the help I am receiving. I don’t have money to donate, my blood is useless so I can’t even do that, but I will figure something out. I want everyone that is reading this and helping me get through this awful and difficult period in my life that I love you, and I would never have been able to even try to fight this on my own. You guys may be the reason I make it through this, and there is no amount of money in the world that could replace what you have all done for me so far. I will pray for all of you in hopes that this never has to be something you go through, and if this does happen to someone I know, God willing  I will be able to be there of you the way you were there for me.

 

The ball is rolling…

I just got an e-mail from MD Anderson Cancer Center, and I have been assigned a patient access specialist. A patient access specialist is the person who coordinates my trip, makes sure I have all my paperwork in order, and that the doctors have all the information they need. Th good thing is I might not need to spend my entire visit in the hospital. I may get a few chances to stay in a hotel, and I guess since people travel to there a lot to get help the hospital worked out some deals with the local hotels and I will get a discount on my hotel stay. The hospital looks huge, and I’ve been to NIH before and I thought that place was big…. but this place seems like it may be bigger. I can’t wait to go there. I am feeling very confident in this. I think the doctors there are very knowledgeable and seem to have a genuine interest in their work as well as making people better. Well..  fingers crossed for now!

Hello All!

Hello. This is my first blog. I am going to update it regularly to keep everyone in the loop with how my progress is going and how I am feeling. So far I have no news to update. I still feel the same, but now that my prednisone does is at 10mg, I am starting to see some of the weight I gained while on it, go away. Currently it is 3:30 in the morning and I can’t sleep because the pain in my legs is so bad it’s keeping me awake. I am holding off on taking any pain meds, because they totally knock me out the next day, and I have a lot of phone calls to make. I am really optimistic about going to the University of Texas M.D. Anderson Cancer Center in Houston, TX. I just hope I can raise enough money to go. I’m trying not to get my hopes up too much, but I feel that they might be able to help me. At this point I’ll do anything to get better. I have a great support system behind me. I am a little nervous about going away so far and probably alone, but I can handle it. You can donate at http://www.giveforward.com/acureforashley . Thank you so much and God bless!