Early Christmas Present from the government and visitors cheer and energize Mr. Mark

Visiting Friends and activities - Mark's friend Allen that he worked with in Reno is visiting with him now. We picked Allen up at the airport on Sunday and he leaves Thursday and we will miss him when he is gone. Several respiratory therapists here in Austin have dropped by each night and Mark has gone on some short trips to show Allen the town. Mary Thiel and Sally Samford (my old boss and co-worker from Austin Community College) who have known Mark for years came by yesterday. Mark said he felt great and seems energized by his visitors. Dr. Fred Hanson is our host for the University of Texas V.S. University of Arkansas men's basketball game tonight. Mark will rest all day in order to have energy for the game.

Mr. Mark received his Medicare Card in the mail this week. Maybe this means that he can get an oncologist in Austin, Texas and maybe not. Mark has now survived two years of stage 4 cancer thanks to lots of prayers and kind acts by readers of this blog, the doctors and nurses at Bumrungrad Hospital in Bangkok, Jin who cared for Mark in Bangkok and lots of friends. Mark tells me everyday how much he appreciates what people have done and are doing to keep him going.

12/28 OOPS addition: Although the Medicare card came in the mail, the benefits don't start until March....guess he won't have an Austin oncologist until March.

MEDICARE
You may recall an earlier blog in which I (Mark's mom) wrote about the government rule that one has to wait two years after becoming disabled by cancer or other problems to be eligible for medicare. This is one of those Medicare donut holes that save government money and leave people without care. For those of you unfamiliar with Medicare, let me point out that physicians and hospitals have their usual charges and some accept Medicare assignment which means that they take whatever Medicare pays and charge the patient nothing more whereas some other physicians and health care facilities do not take assignment and the patient pays the difference between the charges and what Medicare pays. This amount can be substantial in some cases. Some doctors don't take new patients and some don't take Medicare patients at all. Do you know an Austin oncologist who takes Medicare?

Will Mr. Mark Get Fat living With Mom and Cowboy Cook James? James has been baking homemade pizza and cooking Mexican food. Mark has been cooking some true Texas Chilli all day. Texas Chilli has no beans. It is made with a good quality beef, tomatoes, and spices...lots of spices and hot peppers.

Our neighbor Laurie has brought us cookies and cakes as she likes to bake. Mark's favorite eating places are all within a mile radius except for Artz' Rib House which is in South Austin.; favorites include Chuy's, Rudy's bar-b-que, and Austin's Pizza.Today Mark said he may be getting fat on all this good Austin food He is 6 foot tall and at one time during chemo and radiation in Bangkok he weighed 140 pounds and his pants were 30 inch waist. He is now 200 pounds and heading toward a 36 inch waist. Mark thinks some extra pounds when he goes into chemo again in January will help him a lot.

On Wednesday Mark was evaluated for cyberknife and it was a positive experience in many ways. I am very grateful to Dr. Wilson and nurse Catherine for their kind treatment, positive attitudes, and professional manner and the time they each spent with Mark and I. It was one of the best medical experiences I have had in my life time and yet Mark is not to have cyberknife, at least not yet. I'll let you read what Mark wrote about it.

Thursday November 17, 2005
Dear friends, Just to let you know I was evaluated for the cyberknife yesterday and was expecting bad news like the cancer is too advanced or something like that to indicate I was not a candidate for cyberknife, but no...not at all. Mom and I were in the waiting room waiting to see Dr. Wilson. I was filing out the forms for the cyberknife evaluation and talking with a fine gentleman, who is in the process of cyberknife treatments, and his wife. He is over 65 and has battled several sites of cancer and continues to battle cancer and other health problems. He has Medicare and even Blue Cross that pays for cyberknife. I sat there across from him in the waiting room, happy he can have cyberknife. He tells me it is wonderful. It doesn't hurt. It has reduced his pain a lot and he is happy. He highly recomends the cyberknife. I am worried the doctor will say I am too far gone for this treatment. Mom is worried too. In the evaluation, Dr Wilson spent a lot of time with us and was very encouraging. He went over my CAT scans of February and September and showed me that the liver cancer had shrank considerably through chemotherapy. He told me I could have cyberknife and it would reduce my pain and diminish my liver tumors further and cut off blood suppy to the tumors, but it would not cure...I would have to continue chemotherapy...So I was all encouraged thinking maybe I could get my pain at a bearable level and the tumors to a point the chemo might finish them off. Then the bad news came out. Cyberknife would cost me 50,000 dollars. Mom was going to give me $15,000 if that were the cost, but it turns out that the cyberknife costs around $15,000 only if medicare pays because the hospital, and probably the doctors too, take medicare assignment and that is all medicare will pay. If you are on private pay, cash out of your pocket the cost is around $50,000. That is a lot of money. You know I am too young for medicare, but I don't have to wait until I am 65. I have to wait two years after applying for SSDI to get on Medicare. I can have Medicare and get cyberknife in Spring 2007, about 16 months from now.I don't know if cancer will let me wait. If I had kidney dialysis or Lou Gherigs Disease, I could have medicare immediately without waiting as these are the two exceptions to the two year wait for Medicare. If I were over 65, I could have Medicare at the next enrollment period which is January. I can's help but ask: "What kind of system is this in which young people with cancer, who are in their working prime have to wait two years for government help to kill the cancer and go back to work? Most will probably be dead from the cancer before the system kicks in. I guess I should be thankful that if I can keep myself alive for 16 months or so by keeping my cancer under control through paying out of pocket for ongoing chemotherapy and dealing with feeling awful from the chemo and endure the pain , I can hopefully have Medicare and cyberknife.
People in the states keep asking me why I don't get treatment in the United States instead of in Bangkok. The answer to this question is simple: I can't afford treatment in the states. I head back to Bangkok on Tuesday to be treated there. Cancer is a full time job and I am working overtime. Mark