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Jan 5, 2012 01:42AM
Thank you for saying something back to me. This has been like a bomb went off in our house. The 3 of us cried the entire summer of 09, girl hadn't turned 13 yet, shy and extremely attached to us, our only child I had at 40. A blessing. My husband was able to help a lot and now on his duty day my daughter is so sweet, I know I am lucky, blessed, but it isn't enough. Bad enough she missed normal routine with family on birthday, halloween, Christmas due to transfusion, etc. Now she waits for the worst. I try to have hope and talk to her about missing the present and to live/love now. Glad she really opens up to me. I have angst! Yes, mobility issues are a definite, haha how did you know. I was ill during chemo, on experimental avastin, got congestive heart failure, had at least 5 or more blood transfusions, Got burned so bad during radiation doc said worst burn he had seen, fell and broke ankle, serious neuropathy, hands and feet, feet not as painful, swollen everywhere, wt. gain, balance way off, unable to walk any distance without being winded and excruciating pain due to spasms, could be from scoliosis, had nerve ablation surgery but it did not work, now back is worse and in larger area, fell several times resently, daughter had to get me off floor, took w/c to florida on vacation, weird, made girl sad, but at least I could go. Quit driving, even locally. Lympedema is terrible, wear armsleeve and gauntley 24/7. Not doing as well getting dressed and in shower, or even moving in bed.I will most definitely keep trying, I am determined. Brainmush is getting worse...I signed in as ductal and today my husband reminded me it was lobular:) The things that make us laugh! Enough about this, wont mention rheumatoid and going through eval for Cushings syndrome, have a moon face and hump on back, abdominal wt gain, started long ago also but noticed when swelling around clavicle and back of neck got worse after I fell last time hard and had whiplash symptoms. I am more than double my old wt. There is more, but this feels like a horror novel to see it in print!!!! does anyone else have lobular? Does anyone else know of anyone ever with even close to 30 pos nodes? I know it is doubtful,thought I'd ask. At first I was told to pray for a miracle, maybe I got one to be here now. Initial scans before chemo shocked docs they were clear after huge surgery. Hoping they let me have a pet scan again soon. Ct was clear in summer. I'll take it! I stay up late, ankles swell if I stay at computer all night. Miss my old active life, like everyone else, I imagine. My daughter is homeschooled, I can't be primary teacher anymore. She has tons of cousins and we make sure she has fun, but she watches over me, I rarely wake up and she isn't in my arms.She does laugh and have a twisted sense of humor:) Therapist in previous life and volunteered with hospice. Double edged sword. Anguish for her and how will my poor husband handle everything if it comes to that. Deep, huh! Peace and healthy wishes for the coming year.
6/2009, ILC, 6cm+, Stage IV, 30/31 nodes, mets, ER+/PR+, HER2-