Feb 22, 2010 - 8:31 pm
Since 1975, my husband had Type 1 Diabetes. October of 2008, we discovered he needed a transplant and after being on the transplant list for only two weeks, he received a simultaneous kidney/pancreas transplant on Christmas day 2008. Less than six weeks later, during a routine physical his primary care doctor discovered an abnormal involuntary reflex response. He immediately sent him off for an MRI and lumbar jack. At that point the nuerologist found a mass between the T1 and T4 and decided it was probably Transverse Myelitis and told him to come back in February of 2010 for a follow up MRI.
Shortly after my husband began to experience a regular tremor in his legs and hands. Since then he has experienced numbness in both hands at night, the tremor has gotten progressively worse, he has constant back pain and difficulty going from a prone position to a standing position, severe chills without fever and occasional difficulty swallowing. When he went back for his follow up MRI, the nuerologist found the mass was still between the T1 and T4, but that it was now slightly ill defined and decided it was probably a low grade glioma, possibly an astrocytoma. He wants to continue with a "wait and see" course of action with no biopsy.
I have spoken with an oncologist and a brain tumor specialist at allexperts.com and both recommended we push for a biopsy to confirm diagnosis. I have gotten my husband to get a second opinion and push for the biopsy and we are waiting for the films to get them. However, he does not want to pursue any further course of action regardless of the diagnosis as surgery is not an option and chemo would affect his tranplant.
In December, he also had a dangerously low immune system down to a WBC of 1.2, presumably because of the anti-rejection drugs. His nephrologist lowered his dosage, but this month he began showing signs of rejection and the doctor reinstated the higher dosage although his immune system only had a WBC of 5.2. While it was low he also had to take daily Nuepegin shots that increased his bone pain. We have been told that his low immune system will accelerate cancer.
Because of all this he has decided he is dying and has no options. Consequently he is angry and depressed and focusing most of that anger on me, frequently in front of our children. He is also on steroids for the transplant that may be fueling this irrational anger. When I speak to him about it, he claims the problem is me and I need to be on medication for depression. He is quick to anger and frequently pushing for an argument. I've gotten to the point where I don't even argue back and it still goes on for hours. I could understand this behavior if the tumor was in his brain mass, but is this normal behavior for a spinal brain tumor?
I plan on speaking with his doctors about his behavior, but I am at wits end. He is not violent, but frequently threatens me with locking me out, taking everything or other dire consequences. I am living with a stranger who is quick to anger and I am not sure if it is the tumor or depression or a drug reaction. Any thoughts on any of this would help even if it is just knowing that I am not alone. If he is really dying, I don't want him to go through it alone, but I really don't know how much more I can take.
Thanks for listening and sorry this is so long.