Stephanie (Mark's sister) is in Austin for two days. She lives and works in Yokosuka, Japan. A big excitement for Steph and Mom was seeing Sandra Bullock and her husband Jesse James and their son Jessie Jr. in the airport waiting for luggage. The next excitement was heading for Artz Rib House for baby back ribs and music. Art visited with us. He guessed that Sandra Bullock was in Austin for new Quentin Tarrantino film opening. Breakfast at Dan's Hamburgers on Lamar and a look at the tile wall being created by Jean Graham and the people of two Austin neighborhoods were the next adventures. Steph is squeezing in a lot of Austin things to do in a short time before heading to Chicago to present at an educator's conference.

Steph and Mark put a special homemade dry rub on a beef brisket and slow smoked it. Steph values this time with Mark, not knowing if he will survive cancer for two more days, two years, or twenty.

Steph's childhood friend, Kathy Lacey, from high school came up from the Woodlands in Houston and brought her mom, Norma, from Jacksonville, Illinois to eat brisket with us.

Betty, Kathy, Stephanie, Mark, and Norma

Dave,Dorie, and Mark: friends who came for bar-b-que and a visit (Dave's birthday is April 17 and Mark's is April 20

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March 23, 2007
Tell (Mark's Mom) Betty Lou

HAPPY BIRTHDAY tomorrow or anytime in the next two weeks. She celebrates for a long time!!! And pass the address for this blog on to everyone you know; Mom loves to see the number counter and flag board change...!
(Stephanie, logged in as Mom)

Mom got a birthday cake surprise after a meeting of the staff from all shifts at the drug study clinic (CCRI) where she works part time. Even the subjects got cake (except for those in one study where the diet is tightly regulated). Bright and early on the 24th, 5 year old neighbor Jack was at the door with a great birthday card he had made. The birthday afternoon was spent at the Bob Bullock Museum volunteering to help children make a cartouche i.e. write their names in Egyptian hierglyphics, within an oval, using stamp pads with caracters for the letters.


Mark is resting for his trip to Thailand and he will be there for his birthday April 20th (3rd birthday since he was given 3 months to live. His arm where chemo medicine apparently leaked out into the tissues is much better. Pray that Mark is able to get to Thailand and back safely one more time. Mark got a hair cut after James threatened to mow it with a lawn mower and warned Mark that birds were going to nest in it any day.


Friend Frank reports he is recovering from surgery for similar esophogeal gastric tumor as Mark's - after chemo, radiation, then surgery removing part of his stomach and esophagus and some lymph nodes with anastamosis of the stomach and eophagus. This is a common approach to treating esophageal gastric tumors in major cancer treatment centers today. Frank says it takes a surprisingly long time to regain strength from the surgery, but that he is doing very well now. Mark had the chemo and radiation but not the surgery. Had Mark had insurance, he probably would have gotten surgery too.


Durrel (husband of Pam who taught with Stephanie in Japan) died of cancer at his home in Cloudcroft just days after leaving Houston where the medical centers could do no more for him. While teaching in Japan, Pam had gotten a dream assignment in Italy and she and her husband had moved there. Then Durrel was diagnosed with cancer in January of this year, returned to the states, was in Houston about a month, to Cloudcroft for days, then gone to a final resting place. Durrel will be missed; we were fortunate to have known him.
Keep praying for a cancer vaccine, preventative, and cure.

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.

Mark is back in Austin.

Not at Amy's ice cream like the song goes, however he was Chuy's for lunch and out later for a short time (8 pm until 11) to listen to music at Artz Rib House and in the 6th street area : all these short but important adventures with his friend Ken Walker who came over from Mississippi with his brother to visit with Mark. Ken has moved to Mississsippi to help his brother care for their mom. Although Mark is in pain, isn't out of bed more than three hours at a time, and his energy level is way down; he plans his rest and sleep and medication so he can get out a bit and make life seem worth living. Friends, both old and new, are extremely important to him and he loves live music, so isn't it neat that he is in the self-proclaimed live music capital of the world: Austin, Texas . Mark did have to cut his visit with Kenny short one day because of an appointment with the oncologist in Houston. He gave up going to look at motorcycles with Ken to see about treatment at the VA. Mark's friend Ken is a neat guy: retired bank examiner. His brother works for google.

Our trip home from Bangkok was very rough. Through a series of e-mails to the Bangkok United Service team, I had arranged good seats on a United flight home as well as a wheelchair for Mark. We arrived at the new Bangkok airport at 4:30 am. There was no wheelchair and we stood in line only to learn that our packed flight had been cancelled. We were instructed to go stand in line in the Japanese airline lines (JAL) to get another flight. We were 4th in one line. None of the lines were served until 7 am. Although we were 4th in one of the 6 or 7 long lines of people trying to get on this flight due to the United cancellation, we could not have a seat with extra leg room. Eventually we got a wheelchair for the trip to the distant gate. There is little or no compassion for anyone traveling who is ill or needs anything special unless you are traveling business class, which we were not. The airline staff on this trip frequently reminded me of cattle herders prodding the cattle to be in line and load up for the cattle car. Even fellow passengers can't be counted on for compassion. I was trying to load a heavy carry on bag of Mark's in the overhead bin. The stewardesses and stewards were yelling at people to get out of the aisles and get things in the over head bins or under the seats. Ever try to load a heavy bag in the overhead while out of the aisle? I nearly fell over the back of my seat trying. No offers of help from men around me. A guy loading the food carts onto the air plane finally helped me and the stewardess yelled: "That's not his job. He can't do that", but the deed was done. Thank-you Lord for compassionate people. We were 4 hours late getting to Tokyo and lost Mark's chance to rest there. We had to run a long distance accross the airport to barely get on the plane. We were late into San Francisco and missed our flight which was a straight flight to Austin. Again, no wheelchair which I had ordered. The agent at the gate looked his list over and said no we were not on his list for wheelchairs and acted like it would take an act of God or intervention from the CEO of the airlines to get one so Mark walked. He can walk but it just saps his energy and causes him pain. We then had to stand in another long line to be re-routed and a leg was added through Denver. While I went to the bathroom, Mark apparently began to look so pale and in pain that a nice couple in line made him go sit down and told the agent that he really had to have a wheelchair. Ironically when we boarded the plane I was able to trade seats with the husband of this couple who helped us so they could sit accoss the aisle from each other instead of far apart. What goes around comes around. Right? Do airline employees reap good or bad karma depending on how they treat passengers? It is surely possible.

After our long hard trip home, Mark had about 18 hours rest before heading to Houston on Wednesday for a bone scan on Thursday. We'll leave again for Houston today (Sunday) for an appointment with the oncologist on Monday. It is good he was able to have some outings with friends yesterday...otherwise life would just be a series of struggles with airline employees and hospital staff who have no compassion at all and are doing a job for a paycheck; a life of waiting in airport lines and waiting in hospital waiting rooms. When your life is shortened, it seems a shame to have to spend so much of it just waiting.

Adventures keep Mark going even with secondary liver cancer. It was a whirlwind week in Nevada and California.Mark visited there with old friends and saw everything he could. Sometimes he was in bed sick 24 hours and sometimes he was on the go, fishing with Allen (co-worker when Mark worked at a hospital in Reno)going to a party with old co-workers, being at Lake Tahoe, walking in Muir Woods National Park, traveling on US Highway 1 along the ocean, eating at the seashore, seeing and going over Golden Gate Bridge, checking out Haight Ashbury (see picture at Haight Ashbury of legs out the window), staying at his favorite place near Fisherman's warf and the ball park, and doing lots of other interesting and exciting things. The mass balloon ascension of 110 hot air balloons was in Reno and it was beautiful. We worry sometimes that Mark doesn't rest enough or is exposed to too many germs or doesn't eat enough at times or do what we think he should; but the man is amazing in his quest to wring as much out of life as he can and to touch base with as many people and places as he can. Mark had to go back to Bangkok to close up his condo lease and give away his belongings one more time. The plan is for him to be back in the states and getting treatment at the VA in Houston. It looks like he might have enough miles to get the trip back with air miles.

Mark thanks you for any and all kind thoughts, prayers, letters, notes, contibutions, candy, pictures of kids and pets, poems. stories, and children's hand drawn pictures, and all other forms of support sent his way. A couple of friends: Frank in Austin and Allen in Reno took Mark to lunch and to parties in people's homes where he could pretend to be just a regular guy and not even mention the word cancer. Some people like Suresh and Brigitte and Kay Kemper and Greg gave him wonderful invitations, but he ran out of time and strength to accept. Sally Sullivan, Marecella and others made a special effort to come by to meet Mark while he was home. All of you are wonderful to be so kind to Mark.

Go to the archived blog links in the column on the right if you have not read them. You will find stories about many other interesting adventures.

Update on others with esophageal cancer (Mark's primary tumor was esophageal): Ann Richards our former Texas Governor (just before Bush was gov) died recently. She had esophageal cancer but a different kind than Mark and Mr. Frank who called yesterday to report he is doing well with chemotherapy; his tumor has shrank, he has started radiation, and after that the area of the tumor will be surgically removed and the esophagus resown to the stomach.

Hospice Austin. Mr.Mark is hopeful but he tries to be prepared. He had me call Hospice Austin to get information about care and we learned thatthrough this non-profit organization,Mark could receive care at no cost with a statement from an Austin Doctor that he has six months or less to live and is not on any curative path. He could be on chemo, not for cure, but for reducing tumors to decrease pain or distention, and/or make him more comfortable. While not ready for end of life care because he still has that fighting spirit and a little hope left, he has the information in case he reaches that point.
Story of a Hospice Client
When I used to take nursing students to a nursing home/convalescent center,I would assign one of them to Johnny (not his real name)who was on hospice and expected to die in six months or less. He'd be moaning and refusing to leave his bed. The nurses would tell us to be careful as he was fragile and really we probably ought to get a different patient. Within one or two days of being cared for by a pretty young lady, Johnny would get out of bed and start going to the dining hall and would try to teach the student some dance step or amuse her with a story. We would end our clinicals at the nursing home then I would return in six months or a year with a new group of student nurses and Johnny would still be there at deaths door. A pretty student nurse would once more perk Johnny up. Mark reminds me of Johnny. He may have cancer, but put a pretty nurse next to him or some fun thing to do and he is up and going. He is limiting his outings to one a day or two max, separated by rest, to conserve his strength, but he is still going strong and looks the picture of health.
August 21, 2006
Mr. Mark looks so good, we sometimes forget he has cancer and is sick. Mark needs to rest a lot. When he overexerts himself, he is in a good bit of pain. Today he was up all day and over did it and he is fighting pain tonight. Today, Mark and James set up City Navigator North America on the GPS and they are delighted to have the GPS identify all the restaurants and businesses in our area and exactly how to get to these places and to look at maps of Reno and Tahoe and California (We are all going to San Francisco on Sept 4 and we will drive to Reno and Tahoe. It could sound crazy to you that Mark is going on a vacation as sick as he is, but when your days are shortened by cancer, you don't want to spend all of that short time in waiting rooms and treatment. You try to do some things that are fun and special.
Mark and James went to Amy's Ice Cream and did a couple of easy Geocache treasure hunts with the GPS. Mark read the Austin Chronicle from cover to cover and talked about all the movies he would like to see, the live music happenings he would like to hear and all the restaurants he would like to eat in...in the end all he was up to was going over to Rudy's Bar-B-Que and getting take out brisket so tender we did not need a knife. We are trying to get Mark out to one or two Austin places each day and to see a few people while he is here...but we must remember his need to take it a little easier than today.

Latest Adventure - Mark flies from Bangkok to Austin for "Last trip home."

When I last posted I (The Mom) was in Bangkok with Mark. I left Bangkok at 6 am on the 27th of Oct to come back to Austin, Texas. Mark had been saying that he was too sick to make the trip to Austin, but on the day before I left, he suddenly insisted that I get him a ticket to Austin after his next chemotherapy in two weeks. He had not walked more than a couple of blocks at any time, but he insisted on walking 12 blocks to the travel agent to pick up the ticket. He had to climb a lot of stairs to an overpass, rest at the top, then cross and go down stairs on the other side. I was urging him to take a taxi but he decided to build up his strength for upcoming trip to Austin. He also walked the 12 blocks back to the condo. I was certainly amazed. He passed the next two weeks getting ready to come home, getting copies of his records and images and packing enough medicine, etc. He went to get chemo and spiked a temp of 103 during chemo. The infection control doc hospitalized him and wanted to keep him for observation for days...After a couple of days of no fever, I called the doc in Bangkok and asked him to turn Mark loose since he was only getting his temp checked every three hours and it was normal...but in the end he had to sign out AMA.

Mark arrived in Austin on the 8th of Nov. after a long long trip of about 22 hours. He looked great but reminded me he is sick on the inside. He had 3 plus pitting edema of his legs and feet. His eyesight is now fine after surgeries and procedures by specialist in Bangkok so he immediately borrowed my car after not having driven for 10 months. He still has a current drivers license from the Northern Marianas Islands. He immediately started visiting friends he used to work with at the local hospitals and elsewhere. He has gotten together with Bruce and Frank and Steve. He has talked on the phone or gotten calls from Randy and Dave and Paul and others.

He is only home two weeks unless he extends his stay so he has had a terrible sense of urgency about getting things done and people seen. Some of the guys facilitated him getting to see a pain specialist here. My workplace (Dr. Brown's CCRI) got his CBC done.

He has an appointment next wednesday to be evaluated for cyberknife. He realizes his cancer may be too advanced for cyberknife to help. It is not a cure for liver cancer but could give him some more time and less pain if he is a candidate. Cyberknife is more expensive than the plastic surgery I was thinking of getting to make me look better on the outside....I could have my whole body redone for what we will have to pay out of pocket for cyberknife...but guess what they say is true...It is what is on the inside that counts. Mark's insides are more important than my outsides.

Medicare does pay for cyberknife, but ironically Mark has to wait two years after being disabled with cancer to get Medicare. If he had kidney dialysis or Lou Gherig's Disease the two year wait would be waived...says a lot for the renal dialysis and Lou Gherig's Disease lobbies..but it somehow feels like discrimination in health care coverage by the government. I am writing a letter to Lance Armstrong asking him to work on this and put a word in for cancer patients when he sees Pres. Bush later this month. When I taught nursing one of my male students took a week off from school to help take care of Lance Armstrong early on in his treatment for cancer. Most students could not do this and still pass but this guy was very bright and motivated so it worked out ok.

I will keep you posted about Mark's adventures in the states before he returns to Bangkok. He thinks about moving back to Austin...but access to health care is a challenge and it is very costly compared to Thailand. Public transportation on a scale from very poor to very great, finds Austin at the very poor end and Bangkok Thailand at the very great end. Many people in Bangkok don't have a car even if they can afford one. You can get where you are going easier and quicker and cheaper by the sky train and/or subway or in nonpeak hours by taxi. Sometimes when I am on one of Austin's major roadways (like MoPac) and it is like a parking lot with traffic moving at 5 miles an hour or slower, I long for the skytrain or subway of Bangkok. Austin will never have great public transportation as our decision makers prefer to have tollroads which are the answer for the affluent and people who make money on toll roads rather than the answer for the homeless, the poor, the sick, and those who don't drive or can't drive.
Tune in for the continuing adventures of Mark Richardson and his mom's soap box discourses.