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I_love_Gary's Recent CancerCompass Activity

  • I_love_Gary has replied to a post on the message board

    If you've noticed, this is a 2 year old thread, so you likely wonder what it's doing, being brought forward after all this time!  I haven't been here for almost a year, and when I was here regularly, I used to print off some of the threads that meant something to me.  So tonight I can't sleep, thinking a lot, remembering my sweet husband who just lost the big C battle on July 2nd.  I sat down on ...

    July 21, 2012 view post
    • I_love_Gary has replied to a post on the message board

      Oh Tina. I remember all the times you cried out to us here on this site, so scared and distraught. I'm so sorry that your Cliff is lost to you now, but so glad that you have a chance for a fresh new beginning. I'm wondering what brought me back here tonight, and maybe it was to learn your news. Thanks for the update. You have a beautiful life....ok? Donna L

      May 02, 2012 view post
      • I_love_Gary has replied to a post on the message board

        I've only just popped in to read for a few moments, and look what I find! Old friends.....good friends......yes Roxy it is strange to see this site go on and on and on. I haven't been here for so long. Gary is sadly lying in a hospice bed where he has been for 5 months now, and he was bedridden here at home for 5 months before that. There is a story for me to tell one day, but I just never feel like it's the ...

        May 02, 2012 view post
        • I_love_Gary has created a new message board discussion

          It's been a couple of months now that Gary has been bedridden.  My body has been slowly worn out by the last 4 years, but I want him to stay here at home, and so the only way that can work, is for me to accept all the help I can get.  It means that this house is like a train station. CCAC has PSW caregivers coming into our home for 3 hours each morning and 1 hour each evening....

          August 20, 2011 view discussion
          • I_love_Gary has created a new message board discussion

            Hello friends. Although I would like to be back here on a regular basis, and maybe I can be soon, I just don't know when or how.  I miss everyone, but I haven't even been reading,  because now Gary is in the hospital for a complete re-assessment of his current situation.   My time is divided between being there and getting some long overdue sleep.  He went in on Wednesday, and unfortuna...

            July 04, 2011 view discussion
            • I_love_Gary has created a new message board discussion

              Friends are like fine wine.........very difficult to give up, a great pleasure to be with, and thats why although it's only been 10 days since I decided to take a break, I've been peeking.  I can't stay away from you all. Today Gary had his appointment pre temodar cycle.  He has been sooooooo helpless, weak, sad, his skin is a mess, bruises and skin tears, can't walk, or use his left arm at all now.  ...

              June 16, 2011 view discussion
              • I_love_Gary has created a new message board discussion

                I'm angry tonight.  I'm sad, I'm blue, I'm tired, and everything else that you can imagine!!  I'm sick of missing my husband....the one that I married, the one I loved, the guy I was proud to call 'mine'.  He's been gone for so long that I can't remember how life used to be!  I want someone to bring him back to me!  I know, I know, be grateful that he is alive.......yeah I suppose. ...

                June 06, 2011 view discussion
                • I_love_Gary has created a new message board discussion

                  Oh the roller coaster.........we sure get our ups and downs don't we?  Gary has been doing the chemo [temodar] since November on the 21/7 schedule.  But his recurrence just continued to grow slowly.  He was declining physically and emotionally while doing it.  So I asked for a change back to the old familiar 5/23 schedule.  He had just one month of that, shot through it like a champ, and the ...

                  May 12, 2011 view discussion
                  • I_love_Gary has created a new message board discussion

                    Coming here tonight, finding that the multiple posts of cancer cures by spammers are all gone, is like someone opened up the window and let the sun shine in! But yesterday, I was trying to explore a few posts that led me to the 'alternative treatment' category.  I read a lot, and thought that I should keep an open mind about these ideas to learn about the potential for helping our patients.  But one ...

                    April 26, 2011 view discussion
                    • I_love_Gary has created a new message board discussion

                      Since a few weeks ago, when we saw our oncologist, and he finally offered us a clinical trial to aim for, I've been seeing Gary decline a little more each week.  We were told that the temodar he has been on for the last 4 months is not shrinking the tumour, but fortunately only allowing it to grow ever so very slightly.  So I began to wonder why he is on the 21/7 regimen, when he used to do the 5/23 with m...

                      April 16, 2011 view discussion
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                      About I_love_Gary

                      Caregiver
                      Brain Cancer

                      Gary and I were both just semi retired, ready to blast off with fun and travel, and great friends and family, when the evil news was received. Gary had an extensive, right parietal, temporal and frontal lobe GBM tumour. That was April of '07. I keep a picture in my head, of the guy in the pic, the one I've known for 40 plus years, and although he is now passed on, we always managed to find joy in each day, anyway we could.

                      Gary had debulking surgery, resulting in left side paralysis, inpatient and outpatient rehab, radiation and daily temodar, then 12 months of 5/23 temodar cycles. Gary had a DVT in his first year and remained on blood thinners for the duration of his survival.

                      Although we missed our old life, we stayed grateful to have 'life' at all. We were feeling like lottery winners at 3 1/2 years of survival until the MRI on Nov 5, 2010 indicated a new recurrence. So then we went back into the fight again. The new attack included stereotactic radiosurgery, specifically cyberknife x 5 days, with temozolomide 21 days on and 7 days off for 6 cycles. The problem with that regimen turned out to be that it took a greater toll on him than the old 5/23 had. So we went back to the 5/23 regimen just to try to keep the tumour at bay long enough to qualify for a drug trial.
                      I knew that our luck would run out eventually, but we didn't give up until we were finally told in May 2011 that the tumour was still not shrinking, and the condition that Gary was in, would not improve. It appeared that the tumour was taking over his motor strip function! By that time, he was no longer able to walk or do his most basic self care. He was hospitalized for assessment for one week, and then sent home to a hospital bed, with all treatment stopped, and total care! Other people have beaten the recurrence multiple times and we never wanted to give up, but the chemo was deemed to be a losing battle, and he was in no condition any longer to qualify for a drug trial. We expected the tumor to grow aggressively. Well, we couldn't have been more wrong! He was still bedridden and unchanged by Dec '11 but after that 5 mths, I was worn out. I was having my own breakdowns, and at Gary's request, he was placed in a hospice care facility. It was a good one. He was cared for like a king, and he was there for 7 months before he passed away on July 2nd of 2012. So he had a whole year of being bedridden. He could only move his head and his right arm. He never not lost any ability to think or speak, although his continued decline in physical strength made verbalizing more difficult. What I know now, in hindsight, is that the chemo was not effective the second time around, but the cyberknife radiation did kill the beastly tumor, and also killed his motor strip.

                      So 'yes' this disease can be beaten, and Gary was a 5 year survivor, and we made his quality of life as good as we could, but depending on where a tumor is located, and what your personal thoughts are about quality of life, I suggest that you be careful what you wish for....you might just get it. Gary always said he didn't regret anything. I would go back myself and refuse the 2nd radiation. Even though it was stereotactic, it finished off what was left of his motor strip.

                      That's our story, we will always be in love, and I am recovered from the 4 years of physically caring for him. But the heartbreak goes on. How ironic that a man with brain cancer had nothing left of himself at the end but his mind!

                      Maybe our story will offer some guidance to someone who is making decisions right now about treatments. My hope goes with you. Donna L

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