ogliodendroglioma

Thank you for your responce. I actually thought about you a lot today. I have researched and there isn't a lot on oligodendrogliomas. Sure, there is the basic information but not real stories that help us going through this, what others have experienced. Thank you for your offer to help. I have one question, my husband is doing well mentally, he doesn't worry about the diagnosis they gave him (it is always in the back of my head). He is frustrated with all the medication and the occasional seizures. Sometimes he will mention retirement and other things way in the future. I know it is healthy to think this way and not "dooms day." My question is how did your husband handle the diagnosis? I appreciate the person who posted don't live for death, but for tody (something like that). Little sayings like that help. I will keep you in my prayers as well as your children. God bless you.

My husband was okay with the diagnosis.  But he was not able to return to work, due to the type of work he did.  But up until last year he was still able to do his hobbies, such as tickering with motors and fishing.  Over the last year his abilities has deteriated alot.  Just tonight he had bladder problems.  So as you see each day brings new things.  I know I have been looking this tumor up on the internet from time we were diagnosed.  I keep hoping that some new information will show up.  But we take one day at a time, each day is new and God gets us through it.

Thank you so much for your reply. I am so sorry to hear that there is now the other problem (bladder). Thia year has been so emotional. I too hope the will find new methods for a cure or atleast some longer time. I was wondering does your husband have seizures when he is awake or asleep or both? So far my husband only has them in his sleep, which has allowed him to keep his diagnosis mum, at work. I fear the day he may have one at work, that will change life further. I am battling other concerns too. I am a private school teacher in a Christian school. Our three children attend from preschool to 8th grade. I love being there with them but the pay is quite a bit lower then if I taught in a public school. If I was working and making more money it will be easier when that transition comes, but then I struggle with what is best "now." I have to think about our house, bills, feeding them, too because that is security for my children. So I struggle with staying where I am happy, and doing God's work, or preparing for the future. Being a teacher I cannot just quit one day and start somewhere new. It can take awhile to get hired on and then you may not be hired back, in a public school. I am sorry to burden you with my problems, it just gets overwhelming and most do not have this situation, where you have time (years) just not enough. It feels like sometimes I am watching him slowly dying. We were told we have this many years about, what are you supposed to do with that? I know God only knows the future, and I do enjoy each day with him, it is just very scary. I hope you have a good day today. God bless.

 

I feel for you.  When my husband first got diagnosed 7yrs ago, I just quit my job to be a stay-at-home mom.  We went from 2 incomes, to 1 income, to 0 income in a month.  Up until the beginning of this year I worked whenever I could.  But now all I do is stay home with him and volunteer with the local recreation dept..  It keeps me busy.  My two oldest and myself takes turns staying with him.  I have a schedule worked out, so I know when he goes to sleep I have about 4hrs before he gets up again.  Over the last 7 yrs my faith has grown greatly.  I used to worry about bills, food, etc..  But God has taught me to just have faith.  When I relied on myself, we struggled all the time.  But now I leave it up to God.  We always have enough food and bills get paid.  We don't live the life of luxury, but our needs are taken care of.  Your church family will help if they know what is going on.  Sometimes they help and I don't even know until it is done.   My husband has seizures both asleep and awake.  It has taken years and at times I just think I can't do it anymore.  But God gives me the strength.  Just like last night when I was giving him a shower at 11p.m. to wear he didn't smell of urine.  But God has given me the energy and strength to be a baseball mom today.  God is my rock and I depend on him first and then everything else falls into place.

 Trust in God and he will provide.

Bridget

Thank you for your beautiful words. I was at church yesterday and the homily was on vocations, and that if you leave it in God's hands (and put him first) you will be happy. If you try to handle it yourself, it will fall apart. It was so similar to your message, (God is working). I do need to focus on faith. We battled infertility at the age of 21, and we thought (or atleast I, thought it was the end of the world). We ended up adopting three children from foster care (a whole other story), (God is great) and they are our children. They help me get through this, they need me. How is your husband cognitively? I noticed about two months before we knew anything was wrong that he seemed more forgetful and less "sharp." Not to any extreme but just a slight. I contributed it to turning 30. Now, he is less patient, always sleepy (medications), and the deep connection we have always had is there but there are times it feels gone, and I have never experienced that before. I then remember I need to make every day a good one and I do my best. His seizures occur in his sleep so I worry whenever he naps. I am not always home yet. How are your children doing? Only my oldest knows her dad has a brain tumor, the two boys do not (ages 3 and 5). She doesn't know the prognosis. Thank you for spending your valuable time "talking" with me. Have a great day being a baseball mom.