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I feel like I am not getting any answers

christy73
Posts: 2
Joined: Aug 2010

I was diagnosed with grade 2 glioma of the optic nerve in 5/2010. They aren't able to remove the tumor so i had 31 treatments of radiation and 48 days of oral chemotherapy. I am to start the oral chemotherapy again for 6 months.

I had an appointment with my chemo. doctor yesterday who tells me that i am still unable to drive, I am to have an mri on 9/3/2010. I guess there isn't alot of research on this type of tumor is what they are telling me because they can't give me any statatics on success of treatment or anything else.

I am frustrated because I feel like I don't know what I am supposed to do. Do you make future plans or what? Can anyone give me some feedback please, I am really frustrated , I just want to be normal again.

patriciam
Posts: 39
Joined: May 2009

HI Christy,
I am so sorry about your tumor and all the stuff you have to go through. My daughter, 18, was diagnosed with AA3 at 16 and had oral chemo, radiation treatments and has MRI's every three months. She is now ready to start college in a week. I have told her that her medical condition may prevent her from doing some things, but that she should live her life and make plans for the future. Look to the future with hope and don't stop living. As her mom, we all want our normal lives back and one step to doing that is to keep doing what we had planned. I hope this helps. Thinking of you.
pat

amy79a
Posts: 2
Joined: Oct 2008

I agree to what Christy said. I am an almost three year survivor of AA3 and have shunned the statistics from the very beginning. There are a lot of wonderful advancements in the world of brain tumors so today's statistics, even if accurate for today, have nothing to do with tomorrow's outcomes. Besides doctors don't have all the answers and the good ones will be honest with you about that. None of my doctors have given me "statistics" because they are honest about not knowing what each tumor will do. No two tumors are alike. A single mm can be the difference in outcomes.

I have taken the outlook of "Live your life and do what you want. I have not changed any of my goals in life (other than my plan to have a second child) but I am taking them in smaller milestones so that there are celebrations every step of the way." For instance, my long term milestone is to renew my vows to my Hubby at our 20 year anniversary (6 years from now). My shorter milestone is to celebrate our 15 year anniversary next year with something very special. Other goals for me include changing careers in an effort to get my Bachelor's degree without putting so much strain on me. I haven't really changed my goals just simply changed some of the target points or the path I'll take to get there.

Remember a statistic is simply an average. In order for it to be an average some have made it longer and some haven't made it as long. Putting your life on hold waiting to hit the statistic and lose your battle is only going to ensure that it happens. As I've always said, "If you don't have anything to live for, what's the point in living?"

Don't give up on your dreams. Continue to fight for them and embrace your new normal. It's really not so bad once you open up your mind and heart to it.

Good luck to you.

cdavis07
Posts: 11
Joined: Sep 2010

Live one day at time! No need to plan the future for you have no idea what is in store for you. I love everyday that I am given with my husband who has a anaplastic oligodendroglioma III. I have no idea what our future holds but we were given this for a reason. I have no idea what it is like to have a tumor but I do believe in positive energy. No matter what stay positive and see the positive side of everything and you will get through this.

bubica1949
Posts: 8
Joined: Sep 2010

My son Dino (29) had diagnosed with brain tumor Germinoma. We are in middle of nothing, lost our life struggling for my son life. I forget how looks normal life, normal worries, normal happiness. We are at home like in the jail because my son can not walk, only a little bit to rich the bathroom and this is it . Today we left him in hospital for transfusion because his blood count is very low as side effect of radiation. He is very weak, he can not speak , he has not have a strength. But thing that I am worried a lot is his short term memory. Is there anyone else who experienced this kind of problems. Is there any possibility that he will be like he was?
Bub

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