Words can be very imprecise at times when we try to express ourselves and things often don't come out as intended. I've never found your posts to be harsh. Your words are very comforting and you always focus on the positive rather than feeling sorry for yourself.
When I said encephalopathy would be a blessing for Gene I mean't that should his cancer spread, Gene would experience terrible pain and suffering. Because his liver is so delicate, there would be no treatment for him, no liver transplant, chemo, etc. People can suffer for many months or years with metastatic disease. In Gene's case, we'd stop the antibiotics, give pain relief, palliative care and allow Gene to slip into a coma and pass away quickly. Death would be sooner rather than later, I promised Gene three years ago that I would not allow him to suffer and would fight for quality of life. At the time of his esophageal cancer diagnosis two years ago I was simply devistated. In my heart I knew Gene would not survive the surgery but he wanted to go for it so we would have more time together. This all happened about nine months after being diagnosed with cirrhosis. I didn't understand encephalopathy initially as none of the Doctors gave us any explanations and our Internet was down. It wasn't until Gene was being worked up for his cancer surgery that I discovered the causes of encephalopathy as Gene experience all of them; high ammonia levels, infectoin and bleeding. When surgery was called off after he went into a coma, I had mixed feelings. There was a sense of relief that we had more time together even though it might only be for a few months. But the opportunity to rid Gene's body of the cancer surgically was gone. There was nothing anyone could offer so I prayed, focused healing energy on my wonderful Gene and told myself there would be plenty of time for tears after he was gone. We started to live for the moment, express our love and devotion and hold each other as close as we could. By then it was a constant battle to get antibiotics and the right ones. Hospice was resistant and his Doctors were afraid to take a stand.
Let me regress to when Gene was in the coma. Gene responded to Cipro and came out of his coma. He was progressing rapidly until I mentioned to his doctor we had been giving Gene Lactulose every two hours prior to his falling into the coma in attempts to reverse the encephalopathy and go through with the surgery. So they started bringing Lactulose every two hours. The day nurses handed it to me and I only gave it to Gene as needed. But at night, they woke him repeatedly and he choked it down. By morning he had lost his speech again and was terribly dehydrated. But he was discharged anyway and I nursed him back to health or relative health. Then everytime we stopped the antibiotics the encephalopathy returned quickly until the next course of antibiotics was prescribed.
Now several years later, Gene is stable and his lab results are normal or near normal. Whenever we stop the antibiotics or he gets a virus such as the stomach flu, they shoot up drastically. Taking Lactulose doesn't work for Gene and his body has become very resistent to using it. We have cases of the stuff but even his doctors admit it doesn't work for him and often aggravates his symptoms.
Fortunatley, Gene seems to have a strong immune system. I live in fear he will get the regular flu and I know he won't be able to survive without antivirals and the treatment could hasten his death anyway. Before the Cirrhosis, Gene periodically got very, very ill and what was a slight inconvenience for me made Gene deathly ill. We didn't have a clue what was going on but it seems the Hepatitis A he contracted in the army predisposed him towards problems and had anyone done a liver panel over the years, I'm sure it would have showed liver damage.
Sorry to be long winded again.
Love you all,