A peaceful goodbye

Hello all.  I wanted to offer an update that I lost my husband November 20, 2012 to GBM.  He put up a good fight.  We lived as good a year as was possible.  He was surrounded by love and, for the most part, died peacefully in our local hospice center with our two children and me by his side.

I hate adding this without offering some hope to those of you new to this disease.  Our neurosurgeon told us that the surgery, radiation and chemo would offer us approximately one good year - beyond that, a bonus.  She stressed that we needed to push the things we wanted to do to the front of the year, and to enjoy every minute.  She also said that often, with GBM's, patients do very well until the end when they "go down like a freight train."  That was our experience.  When his condition began to turn, it went reasonably fast.  We've had our hard times, but we've had our wonderful times, too.  It was the most intimate year of our marriage. 

I still maintain, if he had his choice of ways to die, he would have chosen this one.  It allowed him to take time off work, enjoy his family, say all of his good-byes, and do many bucket list items.  Unlike many, his right temporal tumor did not cause much up-front trouble.  (No brain tumor is good, but the right temporal ones are much easier than some others.)  All in all, it is rare that one gets notice of when they might die, and are willing and able to take that advice and put it to good use.  He is my hero for doing just that.  Our kids were able to adjust to his passing over time, and the whole process, while hard, was manageable. 

I truly am sorry for those of you newly diagnosed with this disease.  I wish for you better options than are currently available.  I will also agree with many here - hospice was very, very helpful to us.  They helped me maintain dignity and compassion when times got too hard for me to do it all alone.  I also commend my husband for stressing, in front of multiple people, that once he was profoundly confused, that he did NOT want to be sustained in that condition.  It became apparent to us that forcing him to be alert (with steroid use) only forced him to witness his own decline, which was not compassionate.  We were blessed with his foresight and directions and a supportive family.  I wish for all of you loving support, because it is invaluable.

Good luck to everyone.  I'm hitting that island with Karyn where us battle-scarred caregivers have all the luxuries!  : )

Hugs and tears for all of you.

I am glad to hear your husband  had a very peaceful goodbye. I am sorry for your loss.    

On Nov 22, 2012 9:13 PM HubbyhasGBM wrote:

Hello all.  I wanted to offer an update that I lost my husband November 20, 2012 to GBM.  He put up a good fight.  We lived as good a year as was possible.  He was surrounded by love and, for the most part, died peacefully in our local hospice center with our two children and me by his side.

I hate adding this without offering some hope to those of you new to this disease.  Our neurosurgeon told us that the surgery, radiation and chemo would offer us approximately one good year - beyond that, a bonus.  She stressed that we needed to push the things we wanted to do to the front of the year, and to enjoy every minute.  She also said that often, with GBM's, patients do very well until the end when they "go down like a freight train."  That was our experience.  When his condition began to turn, it went reasonably fast.  We've had our hard times, but we've had our wonderful times, too.  It was the most intimate year of our marriage. 

I still maintain, if he had his choice of ways to die, he would have chosen this one.  It allowed him to take time off work, enjoy his family, say all of his good-byes, and do many bucket list items.  Unlike many, his right temporal tumor did not cause much up-front trouble.  (No brain tumor is good, but the right temporal ones are much easier than some others.)  All in all, it is rare that one gets notice of when they might die, and are willing and able to take that advice and put it to good use.  He is my hero for doing just that.  Our kids were able to adjust to his passing over time, and the whole process, while hard, was manageable. 

I truly am sorry for those of you newly diagnosed with this disease.  I wish for you better options than are currently available.  I will also agree with many here - hospice was very, very helpful to us.  They helped me maintain dignity and compassion when times got too hard for me to do it all alone.  I also commend my husband for stressing, in front of multiple people, that once he was profoundly confused, that he did NOT want to be sustained in that condition.  It became apparent to us that forcing him to be alert (with steroid use) only forced him to witness his own decline, which was not compassionate.  We were blessed with his foresight and directions and a supportive family.  I wish for all of you loving support, because it is invaluable.

Good luck to everyone.  I'm hitting that island with Karyn where us battle-scarred caregivers have all the luxuries!  : )

Hugs and tears for all of you.

sorry for your loss i lost my husband to lung/ brain cancer on oct 30th we spent 31 years together and he wanted to be at home with me and our daughter this thanksgiving was not the same i spent it with our older daughter and it was really nice i felt close to him being with her as she was his girl and he was looking down on us as well as my dad that i lost to cancer 14 years ago life throws us many differant things but god is allways their to pick us back up he got me this far through it all and will get me the rest of the way god be with you and your family

I am so very sorry for your loss. I hope you can take comfort that you were there with him, for him. I wish for peace for you.

Thank you for sharing your experiences, you are really helping a lot of us.

Lisa

Love you Girl!!  xoxoxo

On Nov 22, 2012 9:13 PM HubbyhasGBM wrote:

Hello all.  I wanted to offer an update that I lost my husband November 20, 2012 to GBM.  He put up a good fight.  We lived as good a year as was possible.  He was surrounded by love and, for the most part, died peacefully in our local hospice center with our two children and me by his side.

I hate adding this without offering some hope to those of you new to this disease.  Our neurosurgeon told us that the surgery, radiation and chemo would offer us approximately one good year - beyond that, a bonus.  She stressed that we needed to push the things we wanted to do to the front of the year, and to enjoy every minute.  She also said that often, with GBM's, patients do very well until the end when they "go down like a freight train."  That was our experience.  When his condition began to turn, it went reasonably fast.  We've had our hard times, but we've had our wonderful times, too.  It was the most intimate year of our marriage. 

I still maintain, if he had his choice of ways to die, he would have chosen this one.  It allowed him to take time off work, enjoy his family, say all of his good-byes, and do many bucket list items.  Unlike many, his right temporal tumor did not cause much up-front trouble.  (No brain tumor is good, but the right temporal ones are much easier than some others.)  All in all, it is rare that one gets notice of when they might die, and are willing and able to take that advice and put it to good use.  He is my hero for doing just that.  Our kids were able to adjust to his passing over time, and the whole process, while hard, was manageable. 

I truly am sorry for those of you newly diagnosed with this disease.  I wish for you better options than are currently available.  I will also agree with many here - hospice was very, very helpful to us.  They helped me maintain dignity and compassion when times got too hard for me to do it all alone.  I also commend my husband for stressing, in front of multiple people, that once he was profoundly confused, that he did NOT want to be sustained in that condition.  It became apparent to us that forcing him to be alert (with steroid use) only forced him to witness his own decline, which was not compassionate.  We were blessed with his foresight and directions and a supportive family.  I wish for all of you loving support, because it is invaluable.

Good luck to everyone.  I'm hitting that island with Karyn where us battle-scarred caregivers have all the luxuries!  : )

Hugs and tears for all of you.

Iam so sorry for youre loss,  but want to say thanks so much for sharing youre story..my sister in law is 40 and had a tumor removed 3 weeks ago,  and come to find out that she has this horrible cancer herself.  She starts radiation and chemo the 3rd of december.  Drs are telling her she has 12-18 months left,  and thats with treatments.  ive done much researching online about gbm,  and its horrible,  and it seems as if nothing works for this type of cancer.  Hers is a primary tumor that started in the brain,  and will stay there. She never had any symptoms really except some mild headaches,  and dizziness a week or so before the mri found the tumor. Never any siezures,  or vomiting..they said that the problem with this type of tumor is that its so aggressive that it ususally dont respond well to treatment,  and sadly they dont find it until its in its final stage,  as she is in now.  She looks great,  and you would never know that she has stage iv GBM,  her spirits are good,  despite the grim outcome of most people with this debilitating disease. From what ive read people do fairly well in the begining but go down hill fast..any info that someone can share with me about thier exp on this would be greatly appriciated..god bless..

Thank you for your beautiful message. Your words really touched me. My husband is being treated for tonsil cancer. We were given the same advice by his doctor . Take care of what means the most to you and let the rest go. I am glad that the last year you had with your husband was such a good one. God bless you. As ever, Paula

Hi there, sad to see your hubby pass away - given the circumstances, looks like the two of you did your best and the end was peaceful. Thanks for sharing your story.

Good luck to you,

Ravi

Hi Megan, hope your sister does well. My wife (43) was diagnosed last September - we passed our 1 year mark. She had a recurrence this October and is undergoing treatment again.

One recommendation I would like to give - try to enrol in a clinical trial. Some of the vaccine trials that seem promising are out because surgery is already done (DCVax requires surgery to be done at the center doing the trial) - but ICT-107 or CDX-110 are trials that are options for your sister. ICT-107 requires enrollment before radiation starts - CDX-110 after radiation + chemo. If possible, inquire about these and see if you qualify.

Good luck,

Ravi

I know there are no words. I hope you will find healing and strength on that island! Thank you for all of your posts and your strong and compassionate voice.  I always found them comforting.

Peace,

Sue