Small trial suggests the scans might help, but experts aren't so sure
by hpy2b on Mon Sep 03, 2012 07:01 PM
This month I celebrate my 5 year survival anniversary. I resisted posting before because it meant putting more energy into thinking about cancer. And being on the computer is difficult after being diagnosed with a seizure disorder. Survivors will tell you (or not) that there is some guilt associated with being here, when others with GBM have lost their battles. So in some ways it feels rude to say - "congratulations to me for being alive" - but as a survivor I want to share the gift of hope. I'm still here five years later. And I feel the need to acknowledge the precious gift I've been given. Time. Time with my family and friends, other survivors, every one touched by this and let them know that people do live. That curve on the chart that shows the median survival time does have a tail and it goes on and on. I'm on the backside of it now and am happy to be so. As you search for happy, hopeful instances of survivorship, I want you to know you can add my name to the list, and I hope that you can add another name too whether it be yours, or your spouse, your friends, parents, children...
I appreciate that I'm still here and am so greatful that I am. Since the original seizures that put me into the hosptal in September 2007, the subsequent surgery on October 1, 2007 which discovered that the infection they suspected was actually a brain tumor and not just a brain tumor but a stage IV brain tumor (GBM), I've had radation and chemotherapy (Temodar), I've had MRI's every three months, now I'll have them every 6 months, I have memory issues and a seizure disorder with is pretty well controlled with Keppra XR once a day. I take Tai Chi classes twice a week which help with balance and flexibility. I have lived long enough to be given the gift of my first grandbaby and another will arrive in October of this year. My children are all grown up, are becoming parents, going back to school, working, forming loving relationships, my step-sons have gone from little boys to young men, my husband has much more gray in his hair now (I have great sympathy for caregivers, I think it's much harder on them) and every change, every season, every life event is precious to me, even the tough ones.
My friend Ted Washburn was diagnosed in 2006 and his wife Katy runs a website which tells Ted's story and shows them living life to the fullest despite this diagnosis. I saw their site about a year after my diagnosis. At that time I was doing the usual 2am can't sleep anxiety fueled web search for anything good online about survivorship. I found mostly tribute sites, all gloom and doom. I was on chemo, feeling sad, sick and exhausted and really feeling lost. I stumbled on Ted's website and it was like finding an oasis in the desert. It was so encouraging to learn about another GBM patient doing well. Their site is
and I hope you find Ted's story encouraging too.
Ted and Katy have since become dear friends after we discovered that we're practically neighbors, that Ted and I have the same neurosurgeon and go to the same cancer center. Now we go to the same Tai Chi classes and get together for dinner once in a while.
I always try to stay hopeful, be greatful and appreciate every day I wake up to another day of my life.
by ravirajagopalan on Mon Sep 03, 2012 10:57 PM
Hi Jen, congrats. And great to hear your story. Thanks - it does give me hope..:)
by bernadettep on Mon Sep 03, 2012 11:27 PM
by jpmog on Tue Sep 04, 2012 09:25 AM
Awesome to read another good story .... gives us all hope to cling to :)
How long did you stay on the Temodar and have you had any reoccurances?
Thanks for posting!
by john.f on Wed Sep 05, 2012 05:29 PM
This is great and gives us all hope thank you so much. I would really like to hear more and know what you did this can help other find answers. My father has GBM IV had resection in May and now were are on our own path. Next will be Duke it has been a tough road but stories like your really help along this path. I read Ted stories months back and it has given me so much hope this is how I stand strong and keep pushing the rock uphill as I say!
by ASurvivor on Wed Sep 05, 2012 11:58 PM
Jen,May your 5 year survival anniversary be a happy one. I share many of your feelings such as enjoying family, knowing that time is a great gift that has been given us and that giving those who are willing to accept it the gift of hope. Best Wishes,BillDx 8/3/09
by anndono on Thu Sep 06, 2012 01:59 PM
Wow God bless you for living so long with this cancer your the only one that I've read that has lived this long with this type of cancer,my son lived 6 wks with this cancer he was 19,,not a bit jealous would never be thankful there are now DRS ARE CARING an learning so much more to help people with your cancer you made my day when I read your story, God bless you,may you live a very long life.congra ds to you, its not rude for you saying the things youve written,i prayed for a day like reading your story knowing people are living with this longer dear hugs to you,,
by sippican on Thu Sep 06, 2012 09:20 PM
You are blessed I am so happy for you. It is so encouraging for you to share this news as it is so difficult to remain upbeat about a GBM prognosis. A hopeful outlook is so important for the emotional and overall health of both the patient and the caregivers.
Our journey (my husband) just ended after 34 months of fighting this terrible disease. It gives me joy and hope to know there are others who are surviving as long as you-God bless and stay strong!!
by Nanabeeman on Sun Sep 09, 2012 04:07 PM
by anndono on Sun Sep 09, 2012 06:20 PM
mercy Nanabeeman I can't imagine you losing your 2 sisters then a third one getting cancer,makes you wonder why so many in one family its like what are you living so close to that could cause this to happen or why so many in one family,you must be a brave person,I'm sorry for your loss.
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