Bad news

OK so I was having headaches over Christmas and doctors and I thought the seeds were actually working. But today during my scan, I found out that two more tumors have joined in my frontal lobe. Now because the gene therapy is so new for brain tumors the fear is if they inject it into the two that are joined there is the possibility that the gene DNA will cross to one tumor and overload it and leave the other one to do whatever it wants. They do not know if overloading one tumor will do. So I am back on chemo and radiation.That is right radiation with radioactive seeds still in place. I will have treatment every day this week except Friday. So I can look forward to fatigue, nausea,vomiting and pain. I really do not want to go through the pain of the tumors separating again. As my husband has said, a little pain to live longer not a bad trade. I am only afraid because you never know when they will split. Hopefully not while I am driving or out and about but actually around people who can help me.The bombardment of chemo and radiation is in hope that they will split before the gene therapy is ready. So with all this and my first treatment today I am tired,nauseated and frustrated. I have lost control of the Raynard's and am having problems keeping my feet warm enough not to trigger the neuropathy pain. So I am not having fun. I am not encouraged and I am scared of the pain,which is uncommon for me. I am so confident in everything else in my life but right now I am a little bummed and actually and having a normal reaction to this kind of cancer for the first time I was diagnosed.I am still going to hold onto my hope and that God has some kind of plan for me. I can't believe I am going through all this for nothing. I still am not going to believe in the time table.I think if I start thinking that way I will end up another static when I want to be the one who does not follow the rule. Really I have never really followed rules before,so why start now. So here is to a hard week ahead and hopefully a good light at the end of the tunnel. so if I don't post anymore this week you all will know why. I am probably asleep or hugging the porcelain god. Hell of a diet.  More to come.

thank you

Thank you everyone for your prayers. I need them and appreciate them. I know people want to do things for me. I wish I could let you share the pain and alll the other problems. But really treating normally like I am not sick and praying for me is all I can ask for. I love you all.

Christmas

OK so Christmas was great. I enjoyed seeing everyone Christmas eve. That meant the world to me. I am finally getting over this cold. Yes it is 3 am and I am awake again. I have a scan this morning. I have been having some really bad headaches and they want to see if things are getting worse or if the tumors are actually shrinking. The latter would be nice but filled with pain. Oh well can't have everything. Thank you to all of you that donated to our family over the holidays, it is much appreciated. All I want is your prayers and company.Please don't feel like you have to do something. If you want to I am not going to give you any ideas and I won't stop you because everyone deals with this in there own way and if you feel the need to give we will accept. But really time spent with family and friends and prayers are all I will ever ask for. More time. Seems like such a small thing until someone gives you a time limit. but I say screw that i am too cranky and stubborn to believe in time tables. I am a nurse we are the worse patients and I have seen my share of miracles. All I need is one for me. In case I have not said it lately cancer sucks.
Oh yeah, if anyone is reading this, you don't have to post yourself as a follower but send me a little comment that you have been here.It is nice to know when someone I care about is thinking of me.

I am awake

Ok it is 2 am and I am up.Some stupid schmuck decided to fax our house phone.Guess what it woke up Megan so after dealing with putting her back to sleep I am now AWAKE. Still no voice, yeah.Not quite sure how I am going to pull off work today. We will just have to see.So since I am awake, lets talk about pain. It is cold. My feet are blocks of ice that are clumsy and are tripping me every time I walk. I can not lay down as the pain in my hips does not allow it even with my Tens unit.I can not take pain medication for another 3 hrs and I do not want to take any more neurontin as it makes me crazy. So here I am up, alone with my thoughts and prayers until I can fall back asleep. Oh well. I guess with cancer you get what you can and make due around the rest,

Tired of being sick

It is not bad enough to have to deal with all the side effects and crap from chemo and radiation but to top it off I have to get a cold on top of it. So 7 days in on antibiotics, I find out last week I started draining from one of my tumor sites. So on Wed I had some crap put in my head to plugg up the hole that only made the headaches and pressure worse and put the cold pressure on that now try and blow your nose.Kind of feels like your eyes are going to pop out and face is going to fall off. I would rather be vomitting,sad to say but true.Now to top  it off I have lost my voice. I can barely whisoer and my throat feels like it is on fire along with all the pressure. Oh but no more antibiotics or steroids for me, not with a white count of 3. With any luck Santa will at least get rid of my cold for christmas but I will not hold my breath.

People are Great

OK so I am getting ready to go back to work tomorrow and now I have a fever to follow with this cold. I am going to work tomorrow. I will sweat this sucker out of me tonight. Anyways. Yesterday friends of ours called to have us over after Megan's Christmas program. The members of the edgewater flying field dropped off a but load of presents for Megan. Joi's dad wanted Megan to have a extra special Christmas because she is a wonderful girl who takes care of her mommy when she is sick. It amazes me the generosity of people. I can not thank them enough for all they have done. Megan is a special child who rubs my head when it hurts,who plays quietly when I am tired and understands her mom is sick. She acts out only when she is not allowed to help or when we try to hide stuff from her. I am grateful that we were able to tell her these presents came early from Santa because of how much she does for me.
I hope her capacity to care never changes and  I hope that one day I will be able to give her the normal childhood she deserves.

Where I am at now

OK so I was diagnosed with leukemia,ALL about 1 year ago,along with that came 2 brain tumors.After numerous chemo and radiation treatments and some surgery I had 1 cancer free month. Now I have a metastasized brain cancer called astrocytoma,  and it has brought my leukemia back thanks to the radiation treatment that I have had to endure.Astrocytoma at a stage 3 is not good, the stats say 18 months to 5 years max. I have 10 lovely star shaped tumors in my brain. The problem with this shape is the points of the star grow into your tissue. This a cancer that can become begnin but will never leave. I have had by the grace of God been placed with a wonderful oncology team that is very aggressive in treating me. This does not usually occur with this type of cancer.About a month ago I had radioactive seeds placed in 2 of the tumors because they had crossed the mid line of my brain.The main fear of this was the cancer cells getting into the cerebral fluid and traveling thru my nervous system. Near the end of my 30 day mark I was convinced that they were not going to separate,the seeds had almost disappeared. My mother went to a Novena one night,that is a catholic thing.She prayed to God and Mary to take care of me. the next morning while I was in the shower I had the worse pain in my life.It felt as though someone was breaking my skull apart, i was vomiting but nothing would come up.It was so violent for 15 minuted that felt like a hour or two that after I had a hard time breathing from the exertion of it all.Now as that this happened in the shower the cold and pain of throwing up had set off my neuropathy and Raynard's disease,so now not only did I have a whopper of a headache but all around body pain and numbness that kept me in bed for the rest of the day. The good news is the tumors did split. Just this past Thursdays I have had 24 seeds placed in 6 tumors, in hopes to create a kind of barrier from any new one ones from appearing as well as any of the old ones from growing. I have been a good patient this time and have spent the last 4 days in bed. This is very hard for me for 2 reasons, I am  a nurse and I am one of the worst patients I know. I also have a 41/2  yr old daughter who understands too much and is extremely special for wanting to help mommy feel better. She is a strong little girl who understands Mommy is sick and can not run and play outside with her.She knows mommy throws up a lot and has lost her hair/But it is all ok because she prays to God everyday that I get better so I can do these things with her instead of having to play in bed. Kids are wonderful things and she is my hope. I refuse to believe that stats because I will see her grow up. My husband refuses because he will not raise her without me, my mother refuses because i am to bury her she will not bury me. The rules of the house are simple, if I am tired I lay down, if I am cranky from the pain I go to my room. I get up and go to work everyday after treatment because I can and until I am not capable of being a nurse I will continue to go. I work for a wonderful doctor and company that has been extremely supportive and I have only been there for 90 days. The doctor I work with took me along from our last office. Sometimes I think he is crazy for wanting to bring on such a liability but wee make it work. As does my family and friends.My true family and friends do not treat me like I am dead, they laugh with me when my speech gets screwy or I walk in to walls and doors, they take my mood swings with a grain of salt and do everything they can to make me feel normal and not sick. They ask how my day is instead of how are feeling. They ask questions about my treatment but not with pity with genuine concern. The worse thing you can do to a cancer patient is make them feel like they have one foot in the grave and we don't feel that way at all. I do not know what the future holds, there are some treatment plans in place. I can say I am scared now because I have all the seeds in my head and if the tumors shrink that would be great but the pain that comes with is not. I can say I laugh every day mostly at myself.But I get up every morning and carry on as best I can with the pain of the day and side effects of brain tumors. I thank God for everyday I have and for the prayers and love and generosity I have been shown in world where I thought it was gone.The true nature of people comes out when all of a sudden you have a life altering event happen and i am blessed to have so many who care and support me. I am writing this blog because I need a outlet and I need feedback so I am hoping anyone who knows me will read this as I post the going ons and lend me there strength or take some of mine if they need it