December 28, 2006

Pictures: 1. Keith Baker left (shaved his head) and Mark right (with full head of hair grown back after chemo), 2. Frank Sicuro left and Mark right 3. Robert Bone with tribal necklace

Christmas on December 27th We celebrated Christmas two days late or several days early if Jan 6th is the day the wisemen brought gifts and we follow suit. This particular celebration time was chosen because friends, neighbors, and family could not come help us celebrate until then. Mark enjoyed the festivities and helped with the menu, cooking, and eating. He got a Tur-duc-hen for the main course. This is a Louisiana thing which is a duck stuffed into a chicken stuffed into a turkey with dressing. There are turkey wings and legs and the breast looks like a regular turkey with nicely browned skin, but it is boneless and slices nicely. James selected ham to serve also. Charlotte and Kenneth Parkhill and children came from Chicago and Linzey and her daughter Alyssa came from San Antonio, Robert Boone came from France where he has been living and working for three years. Friend Suzie Maloney and our neighbor Keith Baker, who comes from Britain, had lunch with us and played the white elephant thing with some real valuable or interesting surprises in the packages. Charlotte's friends came by with their children so we had a yard full of children playing put put golf and croquet then a hot tub full of giggling kids. James taught the kids to play poker and staked them for 5% interest and they all got a lesson in interest as well as poker. Mark got James a Kinkey Friedman doll for Christmas among other things. He got mom some vibrating house slippers. Mark got some technology to play with. He is quite the techno wizard.
Mark's friends Frank, Bruce. and Dave came by which Mark enjoyed emensely. Dave had to go buy some vibrating house shoes like mom's. The Christmas festivities lasted from Wed. night to Friday morning and ended just about the time to begin the New Year's festivities.
Addendum on 1/1/07 Happy New Year from Mark, Mom, Steph, and James
Mark is sleeping in after going to a special upscale black and white dress New Year's eve party with his friend Dave and Dave's lady. It is a miracle that Mark was able to go to the dog races with Dave in the afternoon and a party at night...either that or just being so far out from the last chemotherapy treatment and lots of prayers and well wishes making him feel better. It is great that he can have a lot of fun adventures before going into chemo again this Friday. Mark told me yesterday to wish you all happy new year and to thank-you all for everything you do for him from prayers to cards to checking the blog and sharing the link with friends, to calls, visits, outings, and everything else. A great big thanks!
Sister Stephanie is in Japan grading papers from last semester and preparing for the new semester and another summer studying in England. She was sorely missed in Austin as she is a cheerful spirit and a darn good cook.
James is replastering and remodeling the kitchen to keep mom from throwing New Years parties. This afternoon....more football and eating black-eyed peas for luck.
Addendum 1/4/07 We are in Houston at the Best Western Reliant Stadium just off 620 South where we get a nice medical discount and free internet connection. Mark drove us down from Austin, but he will not drive back if he gets chemo. He will be too sick. We have had some rough trips down and back but this one down was the easiest. Mark told me last night that he would not complain no matter how bad if I would buy a new/used BMW. He is into BMWs.

December 20, 2006

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.

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.

December 11, 2006

The Long Hall (Haul) at the VA to the Cancer Center
Mark was reflecting about the long hall one has to walk to get to the cancer center at the VA in Houston. This was our third trip to the VA after returning from Bangkok and Mark has not yet gotten treatment. He has seen different care providers each trip to the VA although Dr. Eppner is in charge of his case. The Houston VA cancer center seems to see oncology patients only on Monday and Friday. The receptionist limits Mark's appointment choices to these two days. This seems strange: a beautiful new cancer center which sees patients only two days a week giving out appointments ending at noon on those two days and appointments having nothing to do with when a person is seen so that morning appointments are seen as late into the afternoon as necessary. The doctor three weeks ago said he would try to get the radiology department to interpret Mark's recent CAT scan done in Bangkok instead of making him get a new one. I sent a fax to the doctor last week asking if this had been done or if Mark needed to come before his appointment today to get another CAT scan. No one knew what happened to the fax and today the CAT scan must be done before chemo and chemo can't be done today and Mark's next appointment is January 5th and maybe he will get chemo then. We were hoping to follow the October radiation, to the chest wall tumor, with chemotherapy and give it the one-two punch that knocked out the GE tumor early on but it isn't happening. Dr. Theera in Bangkok had just changed Mark's chemo and wanted it to be continued. Mom ticked the PA off today saying she could send Mark to Bangkok and back for chemo quicker than the VA could get to it (and this is true). If he was not so sick, mom would put Mark on a plane to Bangkok for his chemo, but due to the hard long flight and the cost in the long run especially in case of complications, this is not practical. Mom really did appreciate and thank the PA for getting the CAT scan scheduled today so a separate trip to Houston for a CAt Scan did not have to happen.

It was a very long day. Mark was at the VA at 6:50 am for lab which took awhile since there was already a waiting room full of veterans and long lines waiting for labs. One of the VA docs had asked Mark to participate in a study about hormone levels and cancer. He had refused. Before we got to the lab I was trying to talk him into doing it. He was agitated about this and said I could choose whether he got chemo or did the study. Using my best psychological techniques to probe into what this was all about, Mark said that saying "no" was one of the few things he could control and he has so little control over things in his life. He did decide to comply with the study and do chemo but as it turned out, we were five minutes late to the lab and missed the study doc who had just left and oncology would not do chemo today.

Mark was in oncology by 8:30 his appointment time and he was put in an exam room at 10:10 and sometime after 11 the PA came in to review his chart since she was seeing him for the first time. At 12 noon the PA said no chemo today as Mark must have a CAT scan at the Houston VA for a baseline. The one from Bangkok would not do. Mark was dehydrated and had to have an IV. The CAT scan was done sometime after 4 and we hit the road home at 5 pm in the height of rush hour bumper to bumper traffic. We offered to stay at a motel all night but Mark wanted to go home. By Giddings he was in so much pain (11 on a 1-10 scale), he was begging to stop at a motel in the middle of nowhere. We were back home in Austin by 10 pm. ...a very long day for a sick man.

Preparing to go to Houston at noon today Nov 11 (now 1:16 am)
Mr. Mark was up most of Saturday and is sleeping tonight. Mom worked Thursday night 3-11 and Friday night 11-7 so now Mom has days and nights turned around and is up and Mark is asleep. Earlier tonight Mark was so excited that his friend Alan from Reno area is coming to visit on December 17-21. Alan and Mark worked together as respiratory therapists in Reno at one time. Looking forward to seeing friends and thinking about past and future trips keeps Mark going. We were watching TV tonight and talking about Alan's visit when Mark brought up wanting to go to Australia to visit his friend Carl. He also talked about thinking today of our past trip to Cambodia and how amazing that was as well as our trip to the island of Tinian (see earlier blogs). He brought up his fears that he is getting worse. Sometimes when Mark has felt bad, the doctor has conveyed good news and sometimes when he feels really great the news is bad. In spite of fearing he is getting worse, his sense of humor prevails.
It is time to get some zzzz's (sleep) and head for Houston at noon Sunday to be at the VA lab at 6:45 am on Monday.

December 02, 2006

Mr. Mark Does Clark Kent to Superman Change This Week: Plus a discourse on what to feed people with cancer who are nauseated or "picky"
After a rough trip home from Bangkok, then to the Houston VA hospital (see blogs below), lots of serious pain, and staying in bed for several days; Mr. Mark has put on the superman suit again. He thinks his chest injuries, from the tumor and recent radiation, have been healing. He has cut back on pain medication, been out of bed all day some days and all night other nights reverting back to his sleep/awake cycle from the last two years spent in the opposite side of the world where their day is our night. : twelve noon in Austin Texas is midnight in Bangkok. Mark has been to the electronics store to get "stuff" for his lap top computer. He is happy that he is now a consultant on the new version of yahoo messenger and the new bells and whistles being added to it. He called and wrote to the technicians at yahoo messenger as he installed the new version some time ago and continued to communicate with them and now they let him try the new stuff out and consult on it. Mom is still using the old yahoo messenger on her computer, but can't let Mark get too far ahead of her in the techno nerd king of the hill challenge. In addition to working on the computer, Mark went to the grocery store on his own and bought tons of his favorite snacks and foods.

Speaking of food, I just saw a question a computer cancer board message from a woman asking for advice on foods to give her husband who has cancer and is not eating much. Some articles on the subject suggest no sugar foods and some suggest no red meats and some suggesting cancer fighting foods or herbs or seaweed products. My opinion, based on dealing with Mark , is to provide/cook/serve, at some point when the person with cancer is not taking in enough calories and is eating only small amounts sporadically, anything the person with cancer will eat in the exact way that they want it. Mark's preferences change. Early on, he was on a Kool-aide (and gator aide) craving, drinking lots of it, and asking for it frequently: but after awhile he said something like "Why are you getting me kool-aide, I don't even like it. " Next was licorice: Mark ate tons of licorice which made sense as licorice has some anti-nausea properties. Now he won't touch licorice. There was the crisp bacon kick, then the fresh mashed potatoes with cream gravy, then the small flat pressed hamburger on white bread with the crust cut off and pressed toasted ham and cheese sandwiches and the thin pepperoni pizza craving. Right now, Mark is on a brisket beef, tacco, and queso quest and still craves good thin crust pepperoni pizza. Sometimes Mark will ask for something his grandmother cooked him when he was a child. We try to keep lots of different foods on hand in small amounts. He tells me that from his experience working with sick people, he believes they sometimes want comfort foods of their childhood and finds this true for himself. People with cancer are picky eaters not only because of nausea but because they are distracted from eating because of uncontrolled pain, loss of appetite, and loss of the ability to taste subtle flavors: only being able to taste certain bold flavors like sweet or hot (picant). The loss of control in various areas of their life can sometimes lead to food being a subtle way to get some small amount of control. There are also other reasons why people with cancer don't eat much or eat only certain things or eat them in a certain way. You can strive to provide the person with cancer a balanced diet or reduce their sugar intake, but at some point you may find yourself encouraging them to eat whatever they want.
Our present challenge is to keep from eating too much ourselves and getting our Mark to eat enough.

Update : Stephanie found some info on the Emend (Merck) website that states that they will assist patients with prescriptions in obtaining reimbursement for Emend (nausea pills), or will help those with no insurance obtain Emend free. If this is true, it is a wonderful thing for them to do. Click the picture at the right to have a scale to track your nausea.