My father was diagnosed in Dec 2008 with anaplasic astrocytoma in his spinal cord. He'd had symptoms all year that started with a numbness in his feet which crept all the way up to his rib cage. Initially the neuro called it neuropathy, but it didn't relate to anything and it kept progressing. In August 2008, when he suddenly lost control of the lower part of his body, the cervical and thoracic MRIs showed an undetermined mass in his spinal cord. Given the location and fear of paralysis of his legs and lungs, the doctors didn't want to biopsy the mass. After a month in the hospital and on Decadron, the mass began to shrink so my dad returned home. By November, he worsened and the doctors felt the risk of paralysis was worth taking. The diagnosis was a shock to us and the NYC doctors (who'd consulted other neurosurgeons across the US). The mass was inoperable because of the location and how it was entwined in the nerves of the spinal cord, but it completely responded to the chemo and radiation at NY Presbyterian. He's cancer-free which is great, but the effects have been devastating. He's been in and out of hospitals and rehab facilities and each time he comes home he's significantly weaker and more confused. His brain MRI is clear, but the drugs seem to have taken their toll. Because of the rarity of this cancer, no one has ventured a prognosis.
Before all of this, my dad was a vibrant, active, workaholic 70 year old man who looked like he was 55; the last time he was in the hospital, the nurse asked if he was my mom's father (not her husband)! Now, he can't do anything for himself and has a 24 hour aide to take care of him, clean him, make sure he takes his meds, tries to help him to move his legs and arms for a little "exercise."
As his adult daughter, it kills me everytime I see him (2-3x/wk) and my mom. He just grows weaker and weaker and more unaware. Is this the effect of being on high doses of Decadron for a year? Why is it that everyone else who's had AA in the brain seems to be doing so well?
I've scoured so many websites and I can't find any information on AA originating in the spinal cord. I'm looking for anyone who knows of anyone who's been through this type of cancer in the spinal cord. How have you/caregivers dealt ? What have you done to be able to "breakthrough" to the patient to help them find the inner strength to work hard and recover a little control over. Which of the NYC support groups for caregivers/family are good?
My thoughts and prayers go out to everyone who has had to face cancer in one way or another...it simply sucks!