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heart_and_soul's Recent CancerCompass Activity

  • heart_and_soul has replied to a post on the message board

    Sorry, PATRICK! :o) 

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    • heart_and_soul has replied to a post on the message board

      Dear Geri, I am so sorry to hear about Patric. Not only are you having to absorb this terrible blow but you don't have your best friend to talk to about it! I hope that you have friends and dear family members who will be the loving arms and hearts of the divine spirit of life, wrapping you tight and holding you safe and warm through the holidays and the days beyond. Many will not understand your trauma and exhausti...

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      • heart_and_soul has replied to a post on the message board

        Dear Marian, A bond and a burden we share, and so wish we'd never had to. Forever Niall and Andy, our lovely funny boys, the ones forever young in our hearts. Love to you, an ocean of love, Sarah p.s. The mysteries of afterlife are hardest on parents, I think. Just saw a poem today that fit, for me: A Meetingby Wendell BerryIn a dream I meetmy dead friend. He has, I know, gone long and far,and yet he is the s...

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        • heart_and_soul has replied to a post on the message board

          I feel for you too... what a brutal stage. ANdy was so nauseous, and like Sally I'm not sure what helped the most. He needed dex to manage the pressure. We tried Compazine suppositories but... uh... he pulled them right out! I'm sure the Dilaudid, Haldol and Ativan helped when the Zofran couldn't. I'm brave enough to say that we probably medicated him out of consciousness because he couldn't bear the pain, nausea, an...

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          • misscyndi

            misscyndi sarah its bad and I feel like its my fault I pushed for this surgeryy oh god what have I done he cant speak left side swollen right side numb I see sadness in eyes anaplastic glioma is a word a dont know

          • heart_and_soul

            heart_and_soul oh hon I am so sorry. i am holding you in my heart. please know that NONE of this is your fault, not at ALL. big hugs

        • heart_and_soul has replied to a post on the message board

          LINDA!I am beyond ecstatic for you. I got shivers when I read, "Buddy, I promise to take care of your wife and children the way you would have!" Blessed be and know I am always ALWAYS in your corner. Love and honor,Sarah

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          • heart_and_soul has replied to a post on the message board

            So glad you have let us know you're kicking butt, Jess. You give others hope, too.  I hope as the healing happens you'll have much less pain.  Best, Sarah

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            • heart_and_soul has replied to a post on the message board

              Yes. I have met several people from support websites, and the love and compassion are 100% real. There is nothing like the empathy of others who know how terrifying life has been. I wish you all the best. Sarah 

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              • heart_and_soul has replied to a post on the message board

                Dearest Roxy et al, I hold you always in my heart. If anyone ever needs me, send a PR and I'll see it within a few days. I spend most of my day thinking about Andy and wondering how he is... wherever. The great mystery has always been beyond us mortals and I don't expect to crack the code myself, so I just keep sending him love as if he were in NC or Cal. I do know that the ripples from a beautiful life keep going, ...

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                • heart_and_soul has replied to a post on the message board

                  Yikes, that sounds like a real bummer. I think you might find more experienced advice in the head/neck/throat cancer board. Good luck.

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                  • heart_and_soul has replied to a post on the message board

                    It can be chemo after-effects, or they can be relatively gentle (though unpleasant) focal seizures.

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                    About heart_and_soul

                    Caregiver
                    Brain Cancer
                    Alternative Treatments, Lifestyle, Support, Emotional Support

                    I am the mother of 27 year old Andy. He was diagnosed in January 2009 with a left temporal lobe tumor that turned out to be a combination glioblastoma metaforme IV and PNET (primitive neuro-ectodermal tumor). He had 30% resection, standard 6 weeks of radiation and temodar, then 6 rounds of 5/23 temodar with great results... until suddenly there were four new little tumors growing all through the left side. Carboplatin and Avastin also failed to keep it in check (MRI 1/27/10). THen he was on Avastin every three weeks plus a CCNU (Lomustine) pill every 6 weeks... trying to slow down the progression. On April 21 he had a very bad MRI and we decided to stop all chemo and focus on quality of life. I took Andy on a trip to California and North Carolina to visit friends. Left him in NC with his girlfriend Heidi. They had a great time: karaoke, bowling, even a hot air balloon ride. His only BT issues at the time were short-term memory and organizational skills (minimal understanding of 'time and place'). Then they drove back up to Maine, stopping for visits along the way. They got home on Wednesday May 12th. Then there was a series of brain tumor progressions... like minor explosions going off in his poor head... that over the course of four days pretty much brought him down. He had awful headaches and nausea, poor guy, and the only relief was in the hospital with massive amounts of Dilaudid and ativan. For the last 10 hours of his life, his brain was gone but his heart and lungs kept going and going and going. It was extremely hard on us but we knew he was not suffering. We just kept pouring love onto him, through him, holding him, talking to him, until after his last breath. Andy was not your classic warrior. He was actually not that interested in the cancer, and preferred to not waste much time talking about it. He wanted to LIVE LIVE LIVE. He partied and painted and sang and played and cooked and smoked and drank and just burnt the candle at both ends right up until the end. It was exhausting for us, but we know we did the right thing to run the race with him. It's each person's choice, given such a grim prognosis. Andy was a funny, creative, amazing person and we will miss his style and his laugh, always.

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