We are a few short weeks away from the third anniversary of my husbands diagnosis of esophageal cancer and it's almost four years since being diagnosed with end stage liver disease. Because of the liver failure, Gene was not a candidate for surgery, chemo or radiation. He was given a few months to live and sent home to die. But it was not his time.
We opted for hospice care because the medical profession had nothing to offer. We live under the guillitine knowing Gene can bottom out at any time from a long list of liver/cancer related complications.
Here we are back to exactly where we started six months ago with hospice. We are hearing extended prognosis and discharge for Gene for the second time. What a laugh.
My Gene has two timebombs in his body; two terminal conditions for which his doctor's have prepared us to expect him to bottom out at any time. But this isn't enough to remain with hospice care it seems. Why, because Gene's bloodpressure is still stable and he hasn't lost 30% of his body weight.
Excuse me, his face is drawn and thin as are parts of the body that aren't affected by the ascites and edema. It doesn't take a rocket scientist to know it's fluid retention not muscle and fat.
Since I last posted about Gene he has had multiple worriesome situations including a probable heart attack/blood clot, aspiration/choking because the cancerous tumor in his esophagus is growing and making swallowing difficult, a month of sleeping around the clock and a near coma after having a flu shot.
During the past several months I have watched my beloved Gene near the edge of the clilff and pull back just in time again and again. We seem to set new standards for normalcy weekly because of his declining energy and level of functioning. The one part of him that has not deteriorated has been his cognitive abilities which is miraculous with end stage liver disease. But then my dear one was not nicknamed Miracle Boy for nothing.
Gene wants to fight hospice on this latest development. I'm attending a team meeting next Tuesday where they had hoped to rubber stamp his discharge. They are in for a big surprise. We may go down with the Titanic but not before putting up a good fight.
We could sure use your positive thoughts and prayers. I know I am losing the love of my life. I know the cancer is growing inside him and once it spreads it will go like wildfire through him. And as soon as mets gets to his liver he will experience liver failure and sudden death. His death will also be hastened when he requires strong pain medication which his fragile liver cannot process. Esophageal cancer and cirrhosis are two terrible diseases by themselves. Combine them together and the outcome is not pretty.
Thanks for caring; it's the support of everyone out there that has kept me going.
LIVE IN THE MOMENT!
Hugs and Prayers