Day to celebrate

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Day to celebrate

by LauraHope on Mon Jul 15, 2013 01:41 PM

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I am writing this today because it is 7months since my husband's surgery and yesterday was a lovely day. I want to remember that we have had many good moments in the last 7 months, times of real fun, joy and love.  I am SO grateful that he is more clear headed now and so happy for the good conversations.  When he first came out of the hospital his left side had little motor control, he could barely move his left hand. He could hardly walk, even with a walker. He could not read, because of loss of left side vision.  He was extremely tired, slept all the time and hardly speaking. His brain was so confused he could not dress himself. In contrast - now - He walks unassisted, even up and down stairs.  He showers, shaves and dresses himself. He reads, uses the computer, even sends emails to friends.  He is conversational, interested in people and last night we went to dinner at friends.  He still gets tired, is sometimes depressed and sometimes confused.  BUT I need to remember how far he has come and I want to say how proud I am of his inner strength and determination. OH - one more change - He is much more loving and hugs everyone all the time now.  How long will this last? No human knows.... BUT I do know I am ready to fully appreciate every minute of the time remaining.  Celebrate everyday as a fiesta. Thanks for listening.

Carolynbmaes Carolynbmaes
(Inactive)

RE: Day to celebrate

by Carolynbmaes on Mon Jul 15, 2013 02:08 PM

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Wow what a beautiful post !!!!! So happy for you and your husband my friend. Xoxo carolyn

RE: Day to celebrate

by tessa-b on Mon Jul 15, 2013 07:50 PM

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Thank you for posting this. The timeline is so similar to my husband's - and even the left side motor control problems. I am sometimes so focussed on worries for the future that I forget how incredible he has been in the last 7/8 months -- during which time we got married, for goodness' sake!!

Lovely post, thanks again.

RE: Day to celebrate

by rickglio on Wed Jul 17, 2013 03:05 AM

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On Jul 15, 2013 1:41 PM LauraMontllor wrote:

I am writing this today because it is 7months since my husband's surgery and yesterday was a lovely day. I want to remember that we have had many good moments in the last 7 months, times of real fun, joy and love.  I am SO grateful that he is more clear headed now and so happy for the good conversations.  When he first came out of the hospital his left side had little motor control, he could barely move his left hand. He could hardly walk, even with a walker. He could not read, because of loss of left side vision.  He was extremely tired, slept all the time and hardly speaking. His brain was so confused he could not dress himself. In contrast - now - He walks unassisted, even up and down stairs.  He showers, shaves and dresses himself. He reads, uses the computer, even sends emails to friends.  He is conversational, interested in people and last night we went to dinner at friends.  He still gets tired, is sometimes depressed and sometimes confused.  BUT I need to remember how far he has come and I want to say how proud I am of his inner strength and determination. OH - one more change - He is much more loving and hugs everyone all the time now.  How long will this last? No human knows.... BUT I do know I am ready to fully appreciate every minute of the time remaining.  Celebrate everyday as a fiesta. Thanks for listening.

Happy to hear your husband is doing better. Very happy for the both of you. 7/17/2013 will be exactly 3 years since my surgery to remove the bulk of my tumor (GBM)  I am so thankful to have made it to this point. I am really well. Other than a diagnosis of left homonymous hemianopsia I feel like my old self. If my PET scan scheduled for 8/13/2013 looks good a decision to stop Avastin might be made. I have to stop at some point, just a bit concerned about making the change. I wish your husband the Very Best and hope you both will find my success battling GBM to be encouraging!

RE: Day to celebrate

by pooliepoo on Wed Jul 17, 2013 04:22 AM

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Can I ask how long you were on avastin. I have had three infusions and feel pretty good with only some tiedness due to getting up to early were you able to eliminate steroids that's one thing I'm working on.

RE: Day to celebrate

by LauraHope on Wed Jul 17, 2013 12:10 PM

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So wonderful to hear that you and many others are doing so well.  Grateful for this site and all your honesty .

RE: Day to celebrate

by JenniferONeal on Thu Jul 18, 2013 05:00 AM

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I am interested in this thread because my husband, who was diagnosed last October, is also doing well after a good early start through surgery, rad/chemo, then a big downturn for a couple of months when on the higher chemo dose (he was on Temodar and Dasatinib as a trial) and now much improved after 4 months of Avastin.  He has regained a lot of strength on the left that he had lost and just recently found that he could wash his hair with that hand and tonight unconsciously snapped his fingers!  It brought tears to my eyes.  He is tired easily but went back to work in June.  The thing that he said seems to help the most is to take walks and get his blood moving.  He's trying to wean off of dex, an awful process, but down to 1 mg every other day and recently we started seeing a chiropractor who thought he might be able to help with support of adrenal function and also some more things to do for right brain function.  I feel very blessed to be at this stage and have him doing so well.  He has never been worried and only a bit down at times but trusts in God to be with him through the ups and downs of this journey.  

RE: Day to celebrate

by LauraHope on Thu Jul 18, 2013 01:41 PM

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Thanks for sharing Jennifer,  I too cry (quietly and out of view) when I see my husband do natural actions with his left hand. After so many months of hard work at PT and OT, it is like his brain is getting re-wired. 

Awful scare last night.  He was having some trouble breathing and left our bed to sleep on the couch.  I guess in the middle of the night he tried to turn over, fell off the couch and could not get up.  He was calling for me, but I was so sounds asleep, I did not hear. When I finally go there he was pretty shaken up and we wer both upset.  Thanks to that Most Beautiful Power, he seems OK this morning. But dang, this rollercoaster is NOT a fun ride!

RE: Day to celebrate

by rickglio on Thu Jul 18, 2013 07:28 PM

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On Jul 17, 2013 4:22 AM pooliepoo wrote:

Can I ask how long you were on avastin. I have had three infusions and feel pretty good with only some tiedness due to getting up to early were you able to eliminate steroids that's one thing I'm working on.

Ihave been on Avastin for 2.5 years. A decision to stop Avastin will be considered in Aug. I have handled taking it really well. Just makes be feel tired.  I was only on steroids during my 2 week recover from surgery. I have a NO IN Spartanburg SC and visit Duke every two months. Other than this Glioblastoma i have always been healthy. I think this has helped. I have done nothing special. I eat well and drink plenty of fluids. I do take a multivitamin and calcium every morning. MY doctors at Duke told me not to go over 100% on any of the vitamins. Something about not promoting cell growth as they were trying to kill cells, that is cancer cells. encouraging thoughts for you and all those that are dealing with this cancer.

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