LIVING with brain cancer

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LIVING with brain cancer

by Dodgerblue on Sun Oct 12, 2014 12:35 AM

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I thought I would try to start a new thread dedicated to recognizing all of the amazing things that can happen, be experienced or achieved after a brain tumor/cancer diagnosis.  Many threads are filled with terrified newly diagnosed or others who have ended their journey, and this site serves as a great forum to have their questions answered or share their painful loss and recieve support from those who have walked a similiar path. However, between the beginning and end there is still life to live.  So feel free to share the good times.  Thanks,

Dodger

RE: LIVING with brain cancer

by Dodgerblue on Sun Oct 12, 2014 12:38 AM

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Suppose I should kick it off!

I ran the Hartford half marathon this morning in 1:50:37, three minutes faster than I did last year when I wasn't "sick".

I will also be completing my sixth and final monthly cycle of Temador this Thursday.

Thankful to be alive,

Dodger

RE: LIVING with brain cancer

by Snowdr on Sun Oct 12, 2014 01:52 AM

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Dodger, you are an inspiration! My DH has a recurrent GBM, surgery just 11 months ago. We try to live each day as it comes, spend quality time with the kids (4) and make memories. Prognosis is grim, like so many others. But even so my hubby was able to go skiing with our daughter on Sept 9th. He use to ski, a lot and slalom very well and he had to ski on two skis and have her hold his arm for support to get up, but he did it. He was all smiles.... It was a great moment and I even have it on video! Two weeks ago the kids hosted a surprise birthday for him, had 57 people come and go throughout the day! In 40 days we are all going back to Maui for a family vacation. Sadly, he feels it is one last hurrah, and hopes he feels well enough to go.... But the days are counting down and we are excited. Sometimes it's baby steps..... Sometimes it is a simple feat from days gone by that aren't so simple. Some days for us it's communication that comes better than the day prior. Enjoy the little things, make memories, remove negativity, eat well and celebrate! Melanie

RE: LIVING with brain cancer

by StenE on Sun Oct 12, 2014 05:02 AM

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Dodger,

Good news and success stories are always welcome!

I have also been free from brain cancer for about two years, and I lead a normal life.

There is hope!

Sten

RE: LIVING with brain cancer

by angieblue on Sun Oct 12, 2014 11:29 PM

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Hey Dodger, thanks for this thread. We are two-plus years post diagnosis. We don't sweat the small stuff anymore. Right after the biopsy my husband could barely walk down the street. This summer we visited Glacier National Park where we had close encounters with grizzlies and black bear and moose.  It was awesome. We have gone past one setback after the other but we are still going. This is our new life and we're LIVING it.

RE: LIVING with brain cancer

by rmp1399 on Tue Oct 14, 2014 12:11 PM

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I love the idea of this thread! My mom is 21 months post diagnosis and is doing quite well. She is actually about to leave for a week vacation! She has had, I believe,four clear MRIs now and is living everyday to its fullest. I hope others read these posts and can grab some positivity and hope from them. I know I would have loved to read this thread in the first months of diagnosis. Have a great day everyone!

RE: LIVING with brain cancer

by Olisgone on Tue Oct 14, 2014 01:22 PM

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Dodger, I am in fully agreement with you. It is important to share hope ,because that keeps us going. I have been living a normal life for the past 2 years. For me not the 2 surgeries or treatments that followed ,where hard to take, but the doctors lack of desire to support long surviving abilities in AO or GBM patients. I am going to the gym every other day,walking as much as possible daily ,going on trips with my family. Yes I do have bad days ,mostly because of side effects of medication but they go away. My main concern is to strengthen my immune system. I wished this would be an area on interest for our oncologists as well not only the chemotherapy treatment. I had the chance to go through an immune therapy in a clinic in Germany and it helped a lot. Why can we have it here in US? I hate that we have to travel so far and spend so much money when it should be part of a normal cancer treatment. I am here to stay I am here to beat the odds and I know that you feel the same. Let's beat it! Olisgone

RE: LIVING with brain cancer

by lady24 on Tue Oct 14, 2014 05:23 PM

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Thanks for starting this conversation!  My dad was diagnosed with AA3 in May 2013.  He had surgery, radiation and Temodor for 6 months that ended in March 2014.  He is still recovering from all of this but is doing great! His main complaint is how tired he is which is a side effect of the anti seizure meds he is on. He is still able to spend time with family and friends, just needs extra rest before and after. Our family is thankful for this and the "all clear" scans he has had every three months!

RE: LIVING with brain cancer

by kat54 on Tue Oct 14, 2014 09:10 PM

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This is a good convrsation!  I am 21 year GBM survivor diagnosed in 1993.  Started at 38 just turned 60 last week.  My son was 15 I was blessed to see him Graduate HS, College get Married and am now Great Grandma to our great grandbabies provided by grandchildren of my husbands 4 older children.

My first surgery radiation, radiosurgery and recovery was fairly easy eventhough I haven't been able to return to work since.  I was still able to function fairly well with lots of rest and reduced responsibilities.  My second surgery was 2 years later 1995. much more invasive. I was totally blind for about 5 months and very easily confused and disoriented.  We transfered to ST Croix for almost seven years. Managed to drive on left side of the road, fly back and forth to Louisiana alone for dr. apts, family visits.  Now living in Oklahoma. Just recently quit driving altogether.  I couldn't stand it if I hurt someone. Combination of radiation damage, surgeries and aging.

Still happy to be here plugging along slowly, kathleen

RE: LIVING with brain cancer

by johnjptjpt88888 on Wed Oct 15, 2014 04:05 PM

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It is a great thread Dodger Thanks!!! Olisgone, could you expand a bit further on the, ''I had the chance to go through an immune therapy in a clinic in Germany and it helped a lot. Why can we have it here in US? I hate that we have to travel so far and spend so much money when it should be part of a normal cancer treatment.'' 

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