12 yearBT survivor - giving hope

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12 yearBT survivor - giving hope

by gigi50 on Mon Nov 12, 2012 04:01 PM

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My husband was diagnosed at age 40 with a Grade 3 anaplastic astrocytoma..the day before surgery he found out his blood was out of whack and was subsequently diagnosed with CML a form of leukemia.  That was almost 13 years ago...He had prostate cancer 5 years ago as well.  He is a tough cookie....we have 3 kids who are now almost 22, 20 and 18 and they have only known their dad as someone who has battled and won the whole cancer fight.  He is on a drug Gleevec for the CML and that keeps that disease at bay.  He had surgery to remove the tumor and then radiation, back in 2000 Temodar was in clinical trials so he was not eligible because of the CML.   He took 6 months off work and then returned to a successful job in software sales until 2010 when he started to have symptoms that appeared to be depression.  2011 he spent much of it just sleeping and not doing a whole lot of anything and in Dec 2011 i took him to the hospital as he was having a series of small focal seizures.  We found out then that it was another tumor. It was biopsied and yes it is a GBM.  Inoperable but we live in Ottawa Canada and there is a doctor here that performs a procedure called a brainport (only one in the world right now), so he was able to remove the tumor (or what they could see), he did have radiation as well and is on chemo but has been stopped as he was really getting very sick so his Doc wanted to give him a break.

I read a lot of posts of the unknown and the pain of waiting and wondering.  My husband has been lucky to have watched our kids grow into lovely young adults.  The kids are lucky to have known him much longer than the doctors expected.   But there is no denying that when someone goes through something like this it affects them and the relationships with others.  I have lived through this almost 13 years and feel i could write a support book for caregivers.  It is not easy, you don't know what the future holds but the one thing that i learned is that i don't want to wait for anything to enjoy life...so while balancing my family life, and my work life and understanding that i will be the one that will be working for a longer time than we had planned, i have to enjoy my life....so i play softball, i like to ski, i have a wonderful network of friends that i go out with, i joined a book club, more for the wine than the books but a good night out for conversation.  It is VERY important as a caregiver that you take care of yourself or you will not be very good for the others...We have an mri scheduled in a few weeks and we shall see how that goes....although it feels life is on hold, it has to continue...would be happy to chat with anyone if you want to...

RE: 12 yearBT survivor - giving hope

by Steph917 on Mon Nov 12, 2012 04:28 PM

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Thank you so much for posting.  Your husband is in fact a very tough cookie!!  My mom was just diagnosed with the AA3 had surgery at the end of July and has since finished her radiation. I will never forget the day she found out In fact I still get teary eyed thinking about it. She was having numbness in her left foot and they were acutally doing an MRI to rule out MS.  Never in a million years would we have thought a brain tumor.   A diagnosis like this changes your way of thinking.  And even though she is doing really well and the surgery was very succesful I just cnt help but worry about her constantly. I am 29 and I need my mom  But like you said though it is so important for the caregiver to take care of themselves as well:-) Wishing you luck with the MRI and be sure to keep us posted.  

RE: 12 yearBT survivor - giving hope

by cayus on Tue Nov 13, 2012 04:32 PM

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Thank you for sharing, My Jamie was diagnosed in December of last year with a Grade III AA.  He is fighting the good fight, your story gives me hope that he will see our two boys grow to be young adults.  

RE: 12 yearBT survivor - giving hope

by slbbw on Tue Nov 13, 2012 07:24 PM

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Thank you for sharing.The perspective you speak of, is one I have to constantly remind myself of.  My husband was dxed with oligo/Astro grade 3 about 15 months ago.  He is symptom free and hopefully will stay that way for sometime.  Every so I often, however I need to leave my optimistic world and realize we most likely will be dealing with this again.  Because of that we really do need to enjoy life and make sure as caregivers we consider ourselves as well as the patient. 

I hadn't considered, that I will most likely have to work longer than I orginally thought.  Retirement may not be what I expected 2 years ago, but that laso means I need ot savor my memories now. 

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