Good morning world. Sorry I have not been more responsive of late but most of my friends will tell you I have had a lot to think about and so I have not been communicating. Actually nothing could be further from the truth. I have wanted to communicate a lot but I have been tired. Dragging the computer on to my lap takes energy and collecting my thoughts is a little like crab fishing in the Bering Sea. You get a bite here and you get an empty pot there.
It seems that I am in hospice care now which if I read everything according to Hoyle, means I am in the end stages of life or some such rubbish as that. I am weaker, yes. I do not get around as easily as I use to but I now have a Physical Therapist coming to the house. I have an in home health care aide that comes by three times a week to help me bath, clean the house a bit and keep my life in order and an RN who comes by once a week. I still need to pay someone to come by and cook for me and help me to keep the house straightened up. I desperately need to be able to pay Thomas to come by daily and make sure I am fed. The preparation and the duties surrounding cost roughly $150.00 a week at least as well as to run me out on errands etc. This is something that neither the state or Odyssey pays for. Just to be able to run out of the house to Walgreen’s or WalMart is an adventure anymore. I need more from life than a bath three times a week and some comfort drugs.
AC was paying for the person to make sure I was fed but “AC’s” circumstances have changed and so I need another benefactor or two or three to help make sure this still happens. Please if you have any way to contribute to my “other care fund” as I call it, let me know. I like to eat and I like good food. Thomas washes dishes, clothes, windows, etc. The state and the hospice program do not pay for these services. I want to live and if I am to die I want to make sure I die at home. To be placed in a nursing home will make like easier for everybody else and get me out of their hair but for me you might as well just end it right there when I move into a nursing home.
We supposedly have been through all this with Medi-Cal but the folks here at Horiz0n and Odyssey know nothing about that having already having been arranged for. So I need someone who is up to date with my arrangements and have them work with Odyssey. Frankly no one has even heard of Mercy Perez and all her efforts she has put in to my care. I plan to call her on Monday and find out what she knows. I must admit I like Odyssey/Horizon. My drugs are all paid for but the only thing they pay for is comfort drugs and I am not ready for comfort. And I wish they had paid for my drugs before I had checked out of the hospital. That was an extra $100 I could so desperately use for other things. I want to keep fighting this disease. Maybe it is time to look for alternative or holistic meds to improve my condition. Chemotherapy has done it’s job. What is next? That has run its course. We need to go to step 2.
The doctor came out last week and announced that there was no more care – i.e. no more treatment.
1 response so far ↓
Christopher Tufts // September 24, 2007 at 12:42 pm
And I said to the man who stood at the gate of the year, “Give me a light so that I may tread out into the unknown.” He replied to me. “Go ye out into the darkness and put thine hand into the hand of God which shall be better than light and safer than a known way.”
You have fought the good fight and have done so much better than anyone ever anticipated when you first began treatment some nine months ago. You must pat yourself on the back for your strength and courage to do your chemotherapy.
You got yourself well enough to experience life as you, like all of us, simply take for granted.
I very much enjoyed our visit to the Santa Monica pier, the San Jacinto Mountains, and the Mecca Hills. As you drove at twilight from the Mecca Hills north to the Interstate and west back to Palm Springs I sensed your respite from your disease and sheer delight in the simple freedom of being able to drive. What an incredible sunset that day. A simple joyful and peaceful moment for me and I will always be thankful for that special time with you.
I have not given up on you ever! “God, does not make junk,” as one of my very wise Monsignor friends has said to me.
You must never give up hope. Have faith and God will show you the way!