Apr 06, 2010 - 3:27 pm
I am sure it has been discussed before a hundred times, but I just can’t seem to find an answer- HOW MUCH LONGER? My dad was diagnosed with an inoperable GBM IV in May of 2009. We had about 2 good months after diagnosis and while he was receiving Temodor and radiation. Since mid-July of 2009 my dad’s quality of life has been extremely poor- two very large pulmonary embolisms (4 months apart), a perforated bowl, kidney stones the size of green peas, static seizures about once a month, inability to walk/stand since mid-January, severe depression (depress. meds. haven’t worked) and infections of all kinds. We stopped all treatments in Dec. because his body was just too weak and whether it’s true or not, my family blames the chemo, Avastin and radiation for most of what has happened (besides the kidney stones). It seemed like after every bout of chemo and/or Avastin something terrible would happen and put him in the hospital for 4-5 weeks in agony and at the edge of death.
Yes, we have had good days (although few and far between) and we have been hopeful and positive all along but now it has become unbearable, as he has been ready to go for some time now. Since May of 2009, we have lived everyday like it was going to be his last and as a result my family is exhausted and about to implode. For the past two months, my dad has looked to me to assure him that, “it shouldn’t be much longer, Dad. It will be over soon just hang-in-there.” I can’t stand to tell him that anymore because I just don’t know if that is true.
He is in a constant state of confusion, bad short term memory, very weak- left side in particular, stares off into space, hallucinates, gets annoyed very easily, and his left eye droops. He started out at 235lbs and now weighs about 145. He stopped eating for awhile but has been eating like a horse the last two months. I have read symptom time lines on many web sites, but he has had many of the end-stage symptoms for over 9 months. Of course, no MRI since December (last embolism) when the doc told us to call in hospice and make preparations b/c we halted treatment. The December MRI showed that the tumor was in remission. The hospice nurse told us that time was short (2 weeks max.) two months ago. Every time I think we are at the end, nothing happens, and in a few cases he has a huge rally. I apologize for how callous, hopeless and negative I may sound. I do not simply want my dad to die - I just can’t stand to see him suffer anymore and he begs God every night to take him. I know average life expectancy with GBM IV is twelve months and we weren’t even given that long. Even though such a long post, I have left a lot out as we have been going on for 11 months now. Does anybody have a similar story? HOW MUCH LONGER?