Apr 14, 2012 - 1:48 am
My name is Katie and I am 45 and live in the US. I was diagnosed with a brain stem glioma as well in March 2006. My tumor is very rare as well as is typical a pediatric tumor. But I am extremely lucky because mine is low grade. I have yearly MRI's and so far my tumor has not grown. My tumor is called a Tectal Glioma. It has the tendency to cause hydrocephalus which i do not have. I have found several adults with this tumor. Some have had growth some not. And I have found parents as well. My tumor can not biopsied or removed and there are limited treatment options. My tumor was found due to extreme migriane/headaches. The kept getting worse and became daily. I still have them daily and I am on a cocktail of meds, diet changes, as well as some other things. They are still 24/7 but a little better. I have also tried alternative meds for the headaches. I was told at first that the headaches are not caused by the tumor but every brain stem tumor survivor I find has had some headaches. At this point they think the tumor does contribute to my headaches.
Unfortunately my husband was dx nov 2011 with glioblastoma IV. It is inoperable. He went through radiation and temodar for 6 weeks which shrunk the tumor by 50%. He is just starting his second cycle of 5/23 of temodar. Hi is tumor is towards the back of the corpus callosum and it is intertwined in it. I get the feeling that this is not good.
We also have an eight year old son. I have gotten him and myself to see a social worker but my husband will not see or talk to anyone. Not friends ,family, or a support group or me. He does not have any fight mentality and it goes from him having a pity party to denial. This may sound really harsh but he is being a big baby when he needs to fight. He is the youngest of 7. His mother still babies him and so do his sisters. Example. One sister came over found out he was constipated and decided she (yes she) needed to call his GP for him and then take him to the doctor right away. That day I had 10 minutes to leave to get my right boob mamogrammed again because there was a problem. I told his sister that if hubby wanted to go to the doctor he could call himself and then I had to leave so I could not deal with the situation anymore. So instead of my husband telling his sister that he did not need to go to the doctor (again) for constipation they went.
When I got home I was exhausted they had found calcification spots and now wanted to follow that every 6months. Just what I needed. Hubby and His sister came home from the doc and Announced that the doc took back x-rays again to see if the cancer spread to his spine.....what???. This is the second time in the same month that his sister has taken him to th GP for constipation and the doc has done back X-rays to see if it has spread to his spine. I talked to his NO and the chances of it spreading to the spine is like less than -1%.Because I am not at the appt with his gp he is not getting proper info And his sister is a drama queen and works dave up into thinking he has a blockage or the cancer has spread. The story is a little longer but I would be typing all night. The only deficit Dave has is problems with short term memory. I bought him a IPhone which has calendars with reminders, apps for reminders and a multitude of apps he can download to use for reminders. His mother tells me I should write everything down for him. I tell her he is a 40 year old grown man with a $500 IPhone and he has a notebook, pen and tape to put up notes on the cabinets.
He also does not realize how lucky he is to have so few issues. But Instead of spending time with Sam (8 year old) he sits on the computer on his guitar forums for hours. He does not go to Sam's activities (basketball, cubs scouts) and he can I come home and he is on the computer or some other thing. He will help around the house but he just does not seem to get it. He needs to live his life and spend quality time with his son. He is also not doing what the doctors have told him like exercising.
I am sorry this became a vent but I don't know what to do anymore. I have tried being nice, tried giving him space, tried harsh talks like do you realize you are not spending time with your son and doing everything you can to fight. I even sent him to his mom's one weekend because I needed a break from his moods and I thought my son did too.
I am also dealing with our 13 year old beagle having cancer. He had a big tumor in his neck burst. The tumor was removed and tested and it came back as an aggressive form of cancer. We don't know if it has spread but we are not going to put him through tests just to see. We will keep him happy for as long as he has left. We also have 2 other dogs. 1 is older and has medical problems as well. So if I am not at the doctor for Dave or Myself I am at the vet with one of the dogs. My dogs mean a lot to me. They give unconditional love. You can be gone for an hour and they welcome you home like they have not seen you in a month. When I don't feel good they a nap with me. I love them
And my son. Mommy has a tumor, Daddy has a tumor and the dog had a tumor.
I feel so horrible for complaining here becuase so many of you just hope that your loved one lives one more day. But if I talked to Dave's family they only really care about Dave. We have been married 11years and when I was dx not one of them even called. At the time we were not sure if my tumor was growing. I have to say that my mother in law did help. If I talk to my parent they offer suggests and want to help but they don't live this awful nightmare. And of course we are both on disability. I have not worked since 2006 becuase the headaches are so bad. I have to nap in the afternoon to get my son off the bus and try to function through homework and whatnot. I have thought about not posting this. It is such a negative post. But It has been a bad week. I have been a lurker here for awhile and I appreciate everyone's honest posts. They do help to read. I don't think someone on the outside can begin to understand.
I am terrified. I am at the begging of this journey, my husband has no fight and won't seek counseling. And I am trying like hell to keep my sons life as normal as possible. I know that I am doing well for now? I got approved for soc sec, got down to one car payment, payment plans for hospital bills, Sam still sleeping in his own bed, having friends over, doing activities, and his grades are still good. I just don't know how I am going to do this for the long haul.
Please excuse typos. It's 2am, I have a migriane, and I have cried through this entire post (I don't cry much because I am not alone often). If you got down to the end of this post I thank you for taking the time to read.