Loading...

suzanne55's Recent CancerCompass Activity

  • suzanne55 has replied to a post on the message board

    Thanks, Karyn!

    August 19, 2013 view post
    • suzanne55 has replied to a post on the message board

      Thank you, Punky.  I know we'll make it, but it feels very lonely out here.

      August 11, 2013 view post
      • suzanne55 has created a new message board discussion

        It's been six months since I lost my husband to GBM IV after 15 months of illness. He was 50 and I'm 52. Our kids are 19 and 22. The older one graduated college in June - on Father's Day.  It was torture to watch his face as fellow graduates wished their fathers happy father's day.  He is a kid who holds it all inside. My younger one is going away to the college his father and I always hoped he would choose...

        August 04, 2013 view discussion
        • suzanne55 has replied to a post on the message board

          Just adding my two cents.  I completely understand. It's only been two months, but every day something reminds me. The comment someone made about the toothpaste really hit home.  Dumb little things like the last time he touched something, or the first time I do something since he's been gone. These silly little things make me feel so sad and like each one of them is a step further away.  Yes, the reali...

          February 17, 2013 view post
          • suzanne55 has replied to a post on the message board

            Lisa, My husband was on Avastin for 13 months with no side effects.  In all that time, we saw no growth of the existing tumors - they were quite small to begin with. It was the location in the brainstem that made treatment so difficult. All of the doctors we consulted with considered Avastin to be one of the best tools to come along in treating brain cancer. 

            January 02, 2013 view post
            • suzanne55 has replied to a post on the message board

              Thank you all for your kind words. I know time will take some of the shock and pain away. Hopefully, for all of us.  XX Sue

              December 14, 2012 view post
              • suzanne55 has replied to a post on the message board

                Linda, I'm so sorry you have to deal with cancer and grief at the same time. And I am sorry for your loss. You must be an incredibly strong person!  I'm glad you are doing well with the disease.  Thank you for your kind words. Sue

                December 14, 2012 view post
                • suzanne55 has created a new message board discussion

                  My husband passed away on Sunday the 9th. His tumor location in the brainstem, affected his ability to swallow and he contracted aspiration pneumonia.  Over the course of a month, he would improve because of the antibiotics, and then aspirate again and relapse.  It was so horrible to watch him trying to ignore the illness and keep trying to get up and get stronger. He was in the hospital when they told us t...

                  December 13, 2012 view discussion
                  • suzanne55 has replied to a post on the message board

                    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

                    November 23, 2012 view post
                    • suzanne55 has replied to a post on the message board

                      Hi Phyllis, It's a scary trip, no doubt about it, and I don't think there is a right answer to the "what to do" question.  As far as work goes, I work for myself, and thought I could keep working, but the lack of concentration you mention, along with the just plain exhausting work of taking care of my husband and everything else finally forced me to take a leave. It's been 14 months since his diagnosis. Sometim...

                      November 19, 2012 view post
                      Loading...
                      Load more activity
                      Loading more activity

                      About suzanne55

                      Caregiver
                      Brain Cancer
                      Cancer Treatments, Clinical Trials and Research, Emotional Support

                      My husband was diagnosed with GBM grade IV on 9/9/11. He was 49, and a marathon runner, so was in very good condition prior to this. His main tumor is located in his brain stem. So - not operable. the diagnosis, he went through 7 weeks of radiation. At the same time, they started him on temodar daily. After about six weeks, he started Avastin by infusion twice a month. They switched the temodar to a 5 day cycle every 28 days after his platelet levels fell. So, he continues with the temodar and Avastin. He had 10 months of stable MRIs. Unfortunately, there was a new lesion (tumor) on his MRI this week.

                      His quality of life has been okay. After the initial biopsy, he experienced many physical changes, and the decadron caused a lot of negative side effects - a necessary evil. He was able to work a little from home, but no driving or much walking. He suffered a loss in his field of vision beginning about 2 months ago (6/12), because of the radiation treatments - no vision on the left side. Thankfully, his cognitive skills are mostly intact - some odd personality changes.
                      Update 10/2/12 - they found another lesion on his mri in August. So, a shot of radiation and we cross our fingers. He had another mri about 4 weeks later, but it was too soon to tell, so we will wait until later this month. More personality changes. He can't concentrate, but he tends to fixate on things - his computer, ideas that come into his head, etc. He has been really really down the last few days, and really fatigued.Not sure if it's the tumor or the heat (it's been hot) or depression.


                      12-13-12
                      My husband passed away on Sunday the 9th. His tumor location in the brainstem, affected his ability to swallow and he contracted aspiration pneumonia. Over the course of a month, he would improve because of the antibiotics, and then aspirate again and relapse. It was so horrible to watch him trying to ignore the illness and keep trying to get up and get stronger. He was in the hospital when they told us that there was no hope.

                      We brought him home where he wanted to be, and he waited for our oldest son to get home from college five hours away. There were a lot of people around that morning - visiting nurses and people stopping by. Finally, everyone left except for our two sons and me. We were sitting around his bed telling him we would be okay and that we would always take care of each other. I told him he was the best friend I would ever have. Then we started talking about family stories and the best skiing day ever. One of our sons said, "I don't think he's breathing." It was just like that, peaceful and surrounded by love.

                      I am still in a daze. I had fifteen months warning, but I still wasn't ready. I'm so afraid of the waves of grief that keep washing over me. I'm afraid if I start crying I won't be able to stop. It's hard to imagine the rest of my life without him. I suppose that's why we should take it one day at a time. Sigh. I hate this effing disease!!

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.