May 08, 2012 - 1:33 am
I came to be by the side of a 47 year old man who was diagnosed with GBM in May of 2011. I thought, "I can go be by the side of a dying human and be his friend and happy strength...I got this." I moved 150 miles to the other side of the state, to a whole new climate that's how far I moved... to begin my promise to him. Completely ignorant to what caring for a brain cancer patient entails; I showed up and made my place by his side. He has no family that is able to care for him and he is absolutely indigent. In spite of all the character defects that I have, I would not change our experience as we battle the brain cancer together. I am sad alot and mad alot. I watch him suffer and decline from an athlete to someone who can barely walk. The tumor was on the speech side of his brain and the resectomy left him with a huge speech deficit. I try to remain upbeat and casual in this anything-but-casual situation. His tone of voice has changed and quite often he has the demeanor of a little boy. I watch him run the gammot of 'life ages' all in one day. He has so many doctors and so much medicine and he is so fragile. I try not to cry in front of him because it scares him. Almost a year to the date of the diagnosis we are engaging Palliative care. I am going crazy taking care of him all by myself. I am a fitness person by choice and I feel guilty leaving him to go for a run because he can't run anymore. I won't leave his side. He is dying and according to all the research and conversations I have had with several specialists that have been involved in his care death is inevitable. He has one of the most insidious, sinister brain cancers there is. How to give a dying person hope...when the neurosurgeon told him he has 18 months to live. When his immunity system is so suppressed that any sore he gets become ulcerated, and he suffers. All the pain medication and limited physical activity cannot remove his pain. He has good moments and he likes to eat still. He likes to fish and even though I consider myself a "girl" I take him fishing and get his lures unstuck for him even if I have to wade in to get it unstuck. I am not a sacrificing person by any means (I have never been pregnant even and I'm 46!!) No maternal instincts to speak of and I am the least likely candidate to care for a terminally ill person. But I didn't know any better and I showed up. I showed up because he was alone in the emergency room, didn't have anybody to come and get him and he had just been told he has a brain tumor. I could not turn my back on this human. He was all alone with a brain tumor in his head...that to me is a human travesty. Well, here comes the unfolding of a whole life process:that's what caring for someone who is battling brain cancer is doing. Well, it takes a BULLET PROOF SOUL to watch someone's life unfold to the death.To be 100% selflessy involved and invested in this person's life quality is heavy, but not a burden. His medication list is long, his side effects are heartbreaking, his office visits are many, MRIs, CT scans, bloodwork, hospital stays, the conversations are candid and futile with the doctors while they explain the remedies are life prolonging, but not life saving. We push on regardless of the mini-stroke he had from the Avastin, we push on even with the herpetic neuropathy, We push on in the face of financial devastation, we push on to push away from the end for as long as we can. How about you folks? How are you all handling this situation?