Mark's report on the week in Jomtien Beach, Thailand: the week after his birthday - Mark e-mailed about an elegant opening of a new condo complex in Pattaya. Mark attended with Jin, Angel and George. Every one dressed up in evening attire for this soirée. The food included roast pig. When he feels well Mark loves to look his best and attend these kinds of events so he can mingle and act like a real person and forget he has cancer.
Mark reported that "the girls" (alluding to three girls) dug up about a gallon of the small coquina on the beach and are using these small shell contents to make a soup for dinner. Mark said he is getting brown from being on the beach morning and evening. Should I remind him of the dangers of skin cancer? Probably not, he already has cancer and this is his vacation from cancer treatment; a time to have fun and relax.
Mark will spend about 25 plus hours in the air flying back to Austin arriving this Thursday. Sunday he heads for the VA hospital in Houston.


April 20th Mark celebrated his 47 th birthday; the third birthday since docs gave him three months or less to live .Mark has made a lot of friends in Jomtien beach, Thailand and has just had his birthday party there complete with dancers and fire twirling and Thai food. Wish we all could have been there.
Amazing Coincidences - Mark is staying in a bungalow owned by an Englishman George Richardson (same last name as Mark) and his Thai wife Angel. George is also a survivor of stomach cancer and loves to sail. Mark loves to sail.
Mark is taking a month break from cancer treatment: a break from chemo killing good cells as well as cancerous ones; a break from chemo leaking into his arm tissues causing pain, redness, and heat as well as great concern about loss and use of what was formerly a good vein or veins and fear of loss of tissue. This is a break from pain and riding hours in our old car to Houston to get chemo only to be sent home because of the white blood count being too low and having to return the following week; a break from doctors and staff who are unpredictably either very kind or the exact opposite and from staff who convey a wish to be understanding and those who are not the least bit understanding; a break from the VA system which is a Godsend or a source of frustration depending on the personality or whim of who waits on you or what the rule is or might be that applies to your situation; a break from thinking about what to do next or different in the battle against cancer and how to pay for anything new or different; a break from being nauseated most of the time and weak from chemo. He is enjoying this break immensely.
What is Mark doing and what should he be doing?Mark is relaxing and meditating, visiting the temple, cutting back on pain medication, eating three meals a day, walking on the beach enjoying a calm view of the ocean that he loves surrounded by people who are gentle and a nation of people who tend to be very accepting and kind. Ever think about how judgemental many Americans have become? Nearly everyone of us spends time thinking about what other people should or should not be doing which raises the question: Should we be doing this? Having said this, I invite you to call on your good judgement and feel free to comment or send an e-mail of suggestions for Mark about what you think he needs to do at this time...two years after cancer diagnosis with medicare recently kicking in as his only insurance along with access to the VA system.

Mark's Mom went to Waterloo Records 25th Anniversary party - What a party on the parking lot with lots and lots of bands playing for about 8 hours. Things like this happen in Austin Texas, self proclaimed "Music Capital of the World". Mom and James are cleaning house and partying while Mark is on vacation.

Do you know that Mark's Mom writes a column in a parenting news magazine each month? Yes, Mom has written a column in a parenting magazine every month for the last 15 years. The column (department) to click on is Family Matters. You can read the magazine online at http://www.austinfamily.com/ In the May issue Mom discusses the phenomenon of Helicopter Parents which is a term coined in the early '90s for parents who hover closely over children in college and now is used in a broader sense and includes for parents of younger children who tend to over manage their children's lives and activities. There is an interesting article in USA Today about Helicopter parents hovering over children in the work place; parents who try to negotiate better salaries and circumstances for their child by calling the grown child's boss or human resource director.

People from 51 Countries Have Visited This Blog - Look at the flag board on the right side of the blog. When you touch one of the flags with your cursor it will tell you the country of that flag and in some cases it will bring up a map. Flashing flags are new additions to the board. Visitors have come from: Austria, Afghanistan, Australia, Belgium, Brazil, Canada, Switzerland, Chile, China, Czech republic, Germany, Spain, Finland, France, United Kingdom, Greece, Guam, Hong Kong, Indonesia, Ireland, India, Italy, Israel, Japan, So Korea, Kuwait, Luxembourg, Madagascar,Morocco, Myanmar, Northern Marianas Islands, Mexico, Malaysia, Netherlands, Norway, New Zealand, Peru, Philippines, Poland, Portugal, Russian Federation, Saudi Arabia, Sweden, Singapore, El Salvador, Thailand, Turkey, USA, Serbia, and So. Africa. Thank-you all for visiting the blog and inviting friends from other countries to visit the blog. Mark takes these flags as a sign of support from around the world and this is part of what keeps Mark going when cancer gets tough.

Belinda - We met a young English lady in the waiting room at Bumrungrad Hospital two years ago. She lives on the island of Koh Samui and has a Thai Husband and a darling little boy Bertie. She had never smoked and had no bad habits at all, but she had cancer of the throat. She came back and forth from Koh Samui to Bumrungrad for treatment. At one point she went to Hong Kong to get a pet scan which shows cancerous areas in red. The red color is because of the high metabolism and heat of the cancer. Her husband and Bertie went along and they went to the Disney Park in Hong Kong. She was found to be cancer free at that time. Recently she wrote and cancer is back with her. She has a positive attitude and is returning to treatment. Pray for Belinda and her family. She is a mighty warrier in the cancer battle....but needs all the help and support she can get. Cancer is all around us and the world is full of brave people like Belinda and Mark who are battling cancer.

Where is everyone?
Mark moved to a bungalow at angel's guest resort on Jomtien beach at a fraction of the hotel cost and has the use of a motorcycle. Mark is taking a vacation from cancer treatment which is like his work. Mark has worked very hard at battling cancer enduring more and complaining less than most of us would for over two years, but now he is on a break from it with his plan to make it a fun but low budget vacation . He reports the hour or so ride to the beach at Pattaya from Bangkok at a bargain of 1200 baht or about 34 dollars. Mark says he got 35 baht to the dollar in the Bangkok ATM and ate at a 99 baht ($3) all you can eat bar-b-que buffet.


Stephanie and Ron Clark, award winning teacher and key note speaker at Educator's conference. Phil in the background


Mark's sister Stephanie was in Chicago with Mom for four days where a lot of fun was had. Stephanie attended and presented at an Educator's conference which had 1200 attendees from every state, Europe and Asia. Jackie, who used to teach with Stephanie in Japan but is now a school librarian in a small town in Indiana, drove several hours with her husband and two year old adopted daughter Qi from China to spend a few hours with Stephanie and Mom.










There was too much excitement when Mom had her wallet stollen on the magnificent mile. Stephanie and Phil, a teacher/administrator from Yokosuka where Steph teaches, and Mom had an exciting cab ride to the police station in Chicago to file a crime report.
Stephanie is now in Japan getting ready to head for Bangkok to get her triple "Rs", Rest, Relaxation and Routine check-ups at Bumrungrad Hospital over Spring break from teaching. Mom is in Austin holding down the fort and writing her monthly column for Austin Parent. The next month's column is on Helicopter Parents. Have you heard of this phenomenon?

Stories from the past- When Mark was three to four, mom taught him how to swim in a parent-preschoolers class. By five he was on a swim team. At 16 he had his scuba certification and had his life guard certificate. Before Mark left for Thailand he was telling about when he was in the Navy and stationed at Great Lakes Naval Base how happy he was when the Navy found out he had been a life guard and assigned him life guard duty because had he not gotten this cushy job he would have been out working in the cold and snow with his buddies.

Cowboy James told a story about when he was a teenager and decided to wash his pet goat in the bath tub so it would look nice in an anual parade in his hometown of Olton Texas. He said his mother was not very happy about this goat bathing in the bathtub and his father did not like it much either when the goat walked on top of the family car and tried to eat the tires.

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

)

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.

Another Trip to VA, Mr Really Nice Guy and Mr. Fussy, and the answer to whether Mark will go to Bangkok one more time or not, and the latest buzz in cancer research.
The Accommodations and Trip to VA to Get Chemo and Cat Scan
Mark and I went to Houston for his chemo the week before last and returned home without chemo because Mark's WBC's were too low. On Sunday, the guys had to drive down to Houston again and they shared a room in the courtesy quarters at the VA Hospital on the 4th floor. Two double rooms share a bathroom and Mark reports that he and James were locked out of the bathroom from 4 pm until 10 pm. Mark reports a fight breaking out on the floor which James did not even hear. They could only get this VA room for one night due to heavy demand so they went to the only motel that seemed to have vacant rooms for Monday and Tuesday nights. Houston Rodeo people still have all the rooms booked. The guys report that the ceiling in their rooms was falling in and a car had run into one room and it was left caved in, and the motel did not really have internet except one computer in the lobby which was used by neighbors and nearby schoolchildren and seldom available to guests of the motel, but otherwise it was ok. James went with Mark to Houston as Mom had a National League of Nursing assignment in Pine Bluff Arkansas from Monday until Thursday night.

Mark picked Mom up at the airport on Thursday looking like he was going to surf a wave in Hawaii. He has been boating on Lake Austin with his friend David the last three evenings. They boat down to the Hula Hut and get a bite to eat. What a life! Mark has gotten in all the boating he could as he anticipates being really sick from chemotherapy three days after chemo. Mark is trying to squeeze in all the fun and enjoyment in life that he can and not let cancer treatment consume all the time he has left. He plans to go to Bangkok for one more trip April 3 to May 3. He talked Dr. Breene, his doctor this week, into thinking it was ok: a small sabbatical from chemotherapy.
Mr. Fussy and Mr Nice Guy
There is somewhat of a pattern in which anywhere from one day to three days after chemo until several days before time for chemo again, Mark gradually becomes Mr. Fussy, until he is not happy with anyone or anything, slumped over, depressed, sick, dying, irritable, and worse. Several days before time for chemo again he gradually becomes Mr Really Nice Guy so thoughtful and full of energy, washing and cleaning up the car, cooking, cleaning the house, doing fun things, and positive about everything. Chemo is very crazy making.
Kris Brown's Father who has cancer and is at Sloan Kettering
Kris' father is doing better. He was accumulating fluid in his chest and having to have it drained. Some innovative doc in the ER found a way to fix the problem. ...so no more fluid accumulation. Thanks to Kris I learned that the big thing at Sloan Kettering and many other places seems to be immunotherapy. That is the buzz in research today. Check immunotherapy for adenocarcinoma (type Mark has) .Note: if you click on the words "immunotherapy for adenocarcinoma" above you will go to an interesting article on the latest research.

Mark (center Right) and Allen his friend center left: the two guys with hook em horns signs: the UT sign representing the horns of the Longhorn steer. UT vs A&M mens basketball

Busy Week

Mark and mom returned from the VA hospital in Houston on Tuesday night. Mark's friend Allen from Reno arrived on Wed around 4 p.m.My boss Dr. Brown had given me 2 tickets for the University of Texas vs Texas A and M men's basketball game. I had promised to take our own Aggie James (A and M grad X3) to the game for his birthday. Through a stroke of luck and possibly devine intervention, co-worker Leon gave me his tickets for Mark and Allen (both big UT fans). It was the best game I'd ever seen going into double overtime before A and M got outscored by two points (James says Aggies don't loose..they just get out scored). The game was sold out and scalpers were buying tickets and not selling except in rare instances. I saw 2 tickets selling for $500 which was the going price.

Dr. Eppner would probably get upset with Mark and me if he knew Mark was at a sold out basketball game crowd with his low WBCs and impaired immunity. I do worry some myself, but mark is determined to live life to the fullest. I rationalize that the arena is probably not as dangerous as the hospital waiting room where sick people cough on you.

Mark was on a natural high after the game. Mark and Allen have been alternating sleep and boating on Lake Austin these past two days and Mom has been alternating working three part-time jobs and social and business secretary to Mark with some other fun too.

Not living too high. Least you mistakenly think we are living too high, I am still driving my 10 year old Honda, using my tea bag twice and the guys are staying at no frills places on the quest for a cat scan and chemo in Houston.
Mark and mom in Houston This Past Week

Mark's doctor at the VA in Houston this past Monday: Dr. Chaiyarat Walailuk
This past Sunday when we went to Houston, we were concerned that we couldn't find a hotel room to reserve for Tuesday night due to the Rodeo being at Reliant Stadium and rodeo folks having booked up all rooms anywhere near the Medical Complex. Our hotel is full of cowboys and cowgirls in boots and cowboy hats(jeans and shirts too) .

Click on newspaper to make it big enough to read

We feared we might be homeless under a bridge tomorrow night, but it turned out we won't need a room Tuesday night. Mark's white blood count was too low today to get chemo so we'll go home Tues. after his bone scan rather than Wed. Maybe some of Mark's depressed mood, extreme irritability, and exhaustion is explained by his very low white blood count. Mark's doctor today is from Thailand and knows the doctor who cared for Mark in Thailand. She says Dr. Theera is famous and she was one of his students at the University in Bangkok. She was very professional and yet caring. She and Dr. Eppner are concerned that Mark wants to go to Thailand for a couple of months. They (we) are concerned about his compromised immune system and the risks of traveling with ill passengers and the stress of the long trip. They do not want to be caring for Mark, then not caring for him, and then caring again; viewing this as fragmented care at best. Mom understands their position and on the other hand understands Mark's love of Thailand and people there and his love of adventure and feeling mortal after years of feeling invincible. Could the trip to Thailand be delayed some and possibly shortened to facilitate his treatment for cancer and hopefully keep him alive longer or should he hasten to lie on the beaches of Thailand in case he has only a very short time to live regardless of treatment? The decision is Mark's and it is a tough decision for him.
And It's Not All About Mark - Mark often says "It's not all about me" so I am careful to add important information about other people.

Kitty Worley - All around us people have cancer. Our friend Fred Worley's mother Kitty Worley died of pancreatic cancer. She died a month after diagnosis. Eighty-three years young, she had taught Spanish in the high school at College Station, Texas for 32 years; a ray of sunshine and enthusiasm always. Mom and Stephanie were lucky to meet her and work with her on medical mission trips to Mexico. There were so many people at her service that when we arrived 15 minutes early, the very large church parking lot was full and we had to park 5 blocks away to arrive just after the service began. People were hiking in from greater distances for some time after us with standing room only
Kris Brown's Father - I work part time as a nurse for Dr. Brown and his wife Kris at their drug research facility. Kris is always so kind to ask about Mark and to tell me her family prays for Mark each night. Yesterday Kris reminded me that her father has cancer and is being treated at Sloan Kettering. She has a second family member with cancer. I must ask Kris for more information. It isn't all about Mark. Some of it is about all of you and the struggles you have with your own health problems and those you care for too.
If you have cancer or someone you know has cancer and you would like people to think kind thoughts or pray for you or someone else, let me know and I will write a little something for you.
Bush Presidential Library-Bryan College Station
We went to the Bush Presidential Library while we were in Bryan College Station. Unlike the LBJ Library which is free on the University of Texas Campus, the Bush Library at Texas A and M University has an entrance fee of 5 dollars for seniors and a bit more for younger upward mobile types. I like the LBJ library best because I find it interesting and being free, I am motivated to take visitors to Austin there and I go there often.
It is about you too! Internet Hoax and How to Find Out if Something is a Hoax!
Yesterday a friend sent out a plea to all her friends including me: a plea from someone claiming to have a missing 13 year old daughter and wanting everyone to circulate the message and picture of the beautiful young girl to all our acquaintences. I posted it on the blog then discovered the e-mail address for the mother would not work. Daughter Stephanie went to www.snopes.com and found out this particular missing girl plea was a hoax so we took the plea and picture off this blog. You can use the www.snopes.com to find out about hoaxes that are circulating.
A tad of additional information on Mark - About a week ago, Mark, his friend Bruce, James, Marisela and her sister and brother, Tomas a pastor on the East side and his wife Connie and I all went to see Sharks: a 3-D IMAX. Wow! The fish and sharks swam out in the audience and it was educational and not scarey at all. After the movie Mark told me that he was going to Las Vegas and asked: "Mom could you take me to the airport to catch a 6 am flight?" So I did. He had been telling Bruce he wasn't going to Vegas because he was not feeling well, but gave in when he found a cheap ticket and hotel combination. He came back Sat. and arrived at the airport at 3:45 am. He may have spent most of this time in Vegas in bed, but it was a different bed.
Mark is itching to spend some time in Bangkok. He continues to ride the roller coaster of cancer; feels good for awhile, sick for awhile, fears he is dying any minute then acts like he feels he is immortal, too sick to go somewhere, anxious to get moving while he still feels good enough to travel, joking and showing his sense of humor, irritable and Mr. Fussy.
A strange side effect of chemo: Remember Mark's face getting beet red for a few days before he went to Vegas? His face peeled like a sunburn.

Last Saturday night Mark was feeling so bad he didn't go with James and Mom to hear Pinetop Perkins at Ms B's Restaurant on East 11th. A real upscale place. Pinetop came to support some young piano students from the East side who were playing tonight. He and the band from Antone's played after the young pianists. It was great!
See picture of the world famous blues piano player and community treasure Mr Pinetop Perkins, in his chartreuse Hat, and mom. Taken outside Ms B's

February 15, 2007 - Ice Bats Hockey and Steak

Our friend Marisela, who is a whiz at knowing what's going on and how to get in when there aren't any tickets available, is taking Mark, James, and me (Mom) to see the Austin Ice Bats play tomorrow night. We are fortunate so many friends care about Mark and want to take him on adventures and fill his life with fun things. For those who may not know, that's Fang, the Ice Bats' mascot, pictured to the left.

Mark, always the gourmet cook, is cooking very good steak to build his blood up for next chemo and sticking close to home, except for short adventures with friends, although he would like to be working as a respiratory therapist or on a beach somewhere right now.

February 10, 2007 Chemo takes a toll, just as it has before:
Mark is not leaving the sofa or his bed today , except to periodically go on the deck outside. He has chest pain. His face was red as a beet for two days and he has been so hot he had the airconditioner on frostbite setting upstairs where he sleeps while the heat was on downstairs and I caught him outside barefoot and it was cold outside. He is a little down in mood at times and imagines the worst although it could be reality. He cheers up when one of his friends (Dave, Bruce, Frank) come by. Remember that chemotherapy attacks all the cells in the body and not just cancer cells. When drug research brings us a drug that directly attacks or enters just cancer cells and leaves the healthy cells alone that will be a day for real celebration.
Feb 18 - read this CancerCompass article... maybe they are onto something? http://www.cancercompass.com/cancer-news/1,12158,00.htm )

February 11, 07 Mark signed up for role in Jerry Barret's documentary: My friends Jerry and Christine had the first showing, at the Austin Alamo Drafthouse downtown, of a documentary they directed and produced. Mark is signed up for a role in the next film. His part could be filmed in Bangkok. Jerry and Christine are building a house in Shri Lankra and want to take a trip to Bangkok when Mark and Mom are there to show them around. Jerry is planning to film and show his films in lots of places in the world.

Did you hear about Mark's Teddy Bear Pillows? Chemo in Houston again, Making Friends in VA waiting Room, What's Going On With Mark's Sister Stephanie and his Mom?

Mr. Mark's Teddy Bear Pillows
Mark's hair is falling out again because of chemotherapy. He asked Mom for clean pillow cases because his pillows were "looking like Teddy Bears."
Another whirlwind trip to Houston, and Day 1 of chemo yesterday went well. On day 1 only, he gets Carboplatin 563 mg in 250 of normal saline. Days 1 -3 he gets 5FU 1000 mg. and Leucovorin 648 mg. Looks like doses are based on square mm of body surface. Mark's nurse this week is Maria.

Day 1 of Chemo: New Friends Arlene and Bill
Yesterday in the VA hospital waiting room, I talked for 3 hours with Arlene and Bill whom I had just met. Bill is a Viet Nam vet who served in Germany, too. Bill and Arlene go to motorcycle rallies all over the country where she sells "Do-Rags" and purses with feathers and beads that she makes herself. Because of Bill's cancer they are giving up the rallies to go into the paintball business and sell logo items. They'll still sell Do-Rags and purses, so let me know if you need one and I'll put you in contact with Arlene. Bill makes smokers out of dishwashers and has educated me on how to do this and how to dress and cut up a deer and smoke deer meat so it tastes really good. Life in the waiting room is an ongoing education if you pay attention and make new friends.

Day 3 New Friends - We met a young couple and their beautiful little toddler in the VA hospital waiting room. Melissa and Greg live in Austin, too, and have been coming to the Houston VA oncology clinic for some time, but Greg learned on this day that he doesn't have to return to the clinic for 6 months as his cancer is in remission. Greg tells me that he researched treatment options when first diagnosed with cancer and decided that the Houston VA clinic was the best place for treatment for him, even though, unlike Mark, he has insurance and the VA collects it. Keep in mind that the VA is relatively free with just small co-payments if you don't have large enough income or some kind of health insurance to collect from. Many of the veterans do pay with health insurance or larger co-payments. Since Mark lost both his job/income and insurance when he was diagnosed, he pays only a small co-payment (and whatever it costs to get to Houston and to stay over during chemo).
Greg tells me he started a successful business while undergoing chemotherapy and he fathered a beautiful healthy child: two amazing feats. Like Mark, he has lived nearly 2 years after diagnosis and being told he had 6 months to live. See picture of Mark and Greg below.

Mark will celebrate his third birthday (05, 06, and 07) on April 20th after diagnosis of cancer two years ago in Feb. and he was so fearful he would not live to see the first one. It seems like it should be only two birthdays but it is three. Higher math challenges us all.

Mark's favorite and only sister, Stephanie, and Mom - Stephanie is coming from Yokosuka, Japan to Austin on March 28th to be with Mark for two days and then head to Chicago with her mom for the national school improvement conference for four days. Steph will attend and present at the conference - her topic is getting students involved in school improvement. Maybe I will share with her how to make a smoker out of a dishwasher.

Advances in Medicine and small town drivers in the big city-
Being a medical as well as a psychiatric nurse, advances in medicine interest me. James' Aunt Rowena is hopeful she might get a new artificial artery graft with a heparin coating on the surface to improve her circulation. She has peripheral artery disease (PAD) and her doctors have warned her that in time she might have to have an amputation due to clogged arteries and poor circulation. She has had stints and failed stints and has poor veins. She came from her small Texas panhandle town of Olton, so small it does not have a stop light, to stay with her neice in New Braunfels, near San Antonio. It's in San Antonio that a doctor does these artificial artery grafts with a new type of material. Some of her nieces and knephews visiting from the panhandle won't drive on the interstate in New Braunfels. Niece Nancy said an emphatic "NO!" when I asked her to take me somewhere involving about a mile of interstate highway (US 35). She told me in the town she comes from (Abernathy) two cars can park in the middle of the mainstreet and the drivers can chat with each other without disrupting trafic. If you can't picture this happening, there's a photo of Downtown Abernathy to the right of this paragraph.

Yesterday I read about this new procedure/new graft , mentioned above. It is called a Gore graft according to an article in the Texas Medical Center News in Houston. An artificial artery or piece of artery coated on the surface with heparin is implanted to improve circulation and prevent blood clots. This technique may be a Godsend for Aunt Rowena. In addition to doctors in San Antonio doing this technique, there is a vascular surgeon Dr. Alan Lumsden at DeBakey Heart Center in Houston who is using this new graft.

January 29, 2007
We made a fast trip to the VA in Houston and back. I didn't realize how fast the car could accelerate from a dead stop to 80 until riding with Mark at the wheel. He has a sense of urgency to his life and tries to do lots of things fast as if running out of time and he could be. We just don't know how long he has. His sister asked me why I said on the blog that he was bored. "Didn't he just get back from a trip (see trip in blog below?" I explained to Stephanie that the person with cancer has a different perspective. Never knowing if he will get extremely sick or die in the next 20 minutes, 20 days or 20 weeks, Mark wants to cram in everything fun that he can. He feels better when he has some trip or event planned to look forward to. We were to stay in Houston until Wednesday late, but the chemotherapy was cancelled as Mark's white cell count was too low. His doctor this week was very easy to talk to (remember a different doctor each visit at the VA oncology unit). The doctor was Dr. Breene (spelling? It starts with a B and rhymes with Greene). On the way home Mark appologized for being cranky due to being in pain and expressed concern it was a wasted trip because he could not have chemo, but I encouraged him to think otherwise. Why was this trip not a waste of time? Mark learned his wbcs were down. He got a shot of neupogen to help bring them back up. He had a good talk with the doctor and with his favorite nurse Abraham Ferrer (see story and picture below about nurse Ferrer). We ate a lot of seafood again and I enjoyed the process and I suspect Mark did too the way he attacked those king crab claws and crawfish gumbo.

January 20, 2007
Mr. Mark Gets Time off from Chemo; Takes Solo Trip To Jackson Mississippi and to Antones in Austin to Hear Pinetop Perkins; a Music Legend

Jackson, Mississippi
Surprise of all surprises. Mark was scheduled for chemotherapy three weeks in a row at the VA hospital, but unexpectedly the plan changed and he was given two weeks off. Mark and Mom planned a trip to Jacksonville, Illinois to visit friends and relatives, flying into nearby Springfield; a weekend last minute special cheap fare.This plan was changed because an ice storm was expected in the midwest. Mom found Mark a bargain ticket to Jackson Mississippi to visit his friend Ken and Ken's brother Gary. The guys sat in rockers on Ken's cabin porch out in the country, visited Ken's mother, checked out the casino food, rode motorcycles, and fished. Austin got an ice storm too. Mom worked 26 hours straight at the drug study clinic because relief staff could not make it in. Mark stayed two extra days in Jackson because of the likelihood of cancelled flights or not being able to get home from the Austin airport due to road closures. Sleeping in airports would be too much for someone with cancer. Mom came home from the 26 hour work experience and slept 15 hours straight.
Mr. Mark is lucky so many people love and care about him and he wants to live every minute he can. Loving kindness makes all the difference in the world to Mark and to others who are seriously ill and those who care for them.

Pinetop Perkins - Mark and Mom got an invitation from Barry Nowlin Friday night to hear music legend Pinetop Perkins at Antones, a famous music club in Austin. . At age 93 Pinetop plays great piano and has a wonderful singing voice. Unfortunately mom had to work but Mark was able to go and enjoy Pinetop's presentation for a couple of hours. Thank-you Barry! Mom worked 3-11 and Mark beat her home. He was fast asleep in his bed when Mom came home. Mark requires lots of rest, but miracle of miracles he is getting out and about. Check out Pinetop's concert dates accross the USA at http://www.pinetopperkins.com/index.htm Did you know that Pinetop was the piano player for Muddy Waters Band for 12 years? In addition to being a blues man he plays boggie woogie which is something mom loves.

Mark is lucky to have people wanting to spent time with him and share special events with him and even luckier for being able to do this. Think back to a few weeks ago when he could not get out of bed long due to pain and had trouble riding in a car to Houston. Now he is up more, much less pain, and he is able to drive to Houston. Mark still has to pace himself. After the two hour visit to Antones, he did some major resting.

Addendum January 22
MEDICO
We are getting e-mails from folks who volunteered with MEDICO in remote areas of Honduras and Nicaragua at the same time Mark and Mom did in the past. We think about the astounding things our teams did in bringing medical, eye, and dental care to people in the Moskito Coast and other isolated areas and the wonderful adventures we had. Mark and Mom can't go to remote areas far removed from modern medicine now, but would love to hear from more MEDICO volunteers and maybe you would like to learn more about MEDICO http://www.medico.org/ or more about some of our adventures in remote areas of the world .
Addendum January 27, o7
Today Mark is bored and has been bored most of this week. He has energy to use and can't come up with anything to do other than work on the computer. He bought some new software and hardware for the computer and is playing with it. This morning he advised me that he needs something to look forward to and asked when was his mom getting around to planning a trip or something. We head to Houston tomorrow in preparation for three days of chemotherapy. This is not what he had in mind.
Instructions:
If you click on any picture on the blog it will enlarge and you can see the details; for example click on the picture of Mark and his nurse in the next blog and you can see their faces. There are links throughout the blog that you can click on such as MEDICO and that webpage will come up.

Mr. Mark gets Chemotherapy at the VA, eats wonderful seafood, takes mom car shopping, and visits the Blanton Art Museum

Mark looks and says he feels the best he has for a real long time. He drove me to Houston, for his chemo appointments, partly because he likes to drive and felt good and partly because mom was tired having worked 12 hours, slept 4 and worked 5 more hours at the drug study clinic just before leaving on our Houston trip. We left Austin about 3 pm and had a pleasant drive on a warm sunny Sunday. During the drive, we talked about stopping and renting an RV and running away from home and chemo to tour the USA or go to the international airport in Houston and begin our around the world trip. It was tempting for Mark to skip chemo and avoid its awful side effects; however we stuck to our plans to go to the Veteran's Hospital Cancer Center on Monday. Mark's doctor for chemotherapy, under the supervision of Dr. Eppner, is Sira Hussan. She is very polite and wants to help. Mark's nurse today was Abraham Ferrer. His family comes from the Philippine islands and many of his family work as nurses in various health care facilities in the Houston area. Nurse Ferrer seems caring and does his best to understand Mark and others under his care.
Mark gets around and people remark on his hair. Mark had chemotherapy three days (Monday thru Wed). He pushed his IV stand around to socialize with other patients and their families and mom. One man who comes for chemo looked at Mark's thick head of hair and said: Your hair is going to fall out" and Mark replied that it had all fallen out already and even the hair under and on his arms fell out, but then it grew back in. This man said: " I hope mine grows back too." Mark hopes his does not fall out again.
We are a long way from understanding how the VA system works. We thought the clinic was only open on Monday and Friday, because those were the only options given to us for appointments before chemo started, but now we see clients for chemotherapy are here during the week and other patients too. The nurses and docs do seem to be close to some patients who have come here for awhile to get chemotherapy. We saw a warmer caring side of the nurses with patients receiving chemotherapy. Patient for chemo don't seem to wait as long as other patients, but everyone waits; some with early morning appointments wait all day thinking any minute they will be seen and finally in late afternoon they are seen. Most often, no amount of checking to see if one is forgotten elicits anything more than.."It won't be long."Hours and hours of waiting by patients and their families. I read that a researcher is studying the cost to patients and families who sit long hours in the waiting room.
Mark is enjoying his food. Two days in a row, Mark and I ate supper at the Baytown Seafood Market and Restaurant on South Main. The food is excellent. We've eaten gumbo, small lobster tails, fried oysters and shrimp. The price is good. The waitresses remembered us the second time we appeared. This is now my favorite restaurant in Houston. Mark's favorite in Austin is Austin's Pizza. He orders an Austin's pizza every two or three days. Even if he is nauseated and/or has no appetite, he somehow can eat Austin's Pizza. Maybe this pizza has some anti-cancer properties; could this be why Mark is feeling so good these days and feeling like he is in remission? Or is it support and prayers from all over the world; perhaps both pizza and prayers?

CARS Today after chemo, we looked in the hospital parking lot to find cars we liked and then went to several car dealerhsips where Mark and I test drove some new and used cars including his favorite one; the Toyota FJ with 4 wheel drive. We fear my 12 year old Honda will die on a trip to Houston or back. Mark used a good many arguments for mom buying a new car and we had a good bit of fun looking at cars.
Many nice things happened to Mark and me today and we feel the many prayers and nice thoughts people have for Mark and I are bringing us many blessings and we feel our burden lightened because of this. We feel not only blessed but supported and loved.

Plans change often without warning at the VA. We were given written instructions for Mark to have chemo three weeks in a row but just before we left the VA, we learned no chemo this coming week and we got a new schedule with two weeks off. We debate going on a small adventure.
Addendum 1/11/07 Today Mark and I went to the Blanton Museum of Art accross from the Bob Bullock Museum. For people all over the world contemplating a visit to Austin, the Blanton museum is free on Thursday. You only pay to park. The Luca Cambiaso (1527-1585) exhibit ends on Sunday. The Blanton owns 7 of Cambiaso's paintings, which is more than half of his paintings found in the USA. Many more of Cambiaso's paintings and his drawings are on loan and display now. Few of these paintings have been displayed outside of Italy. Cambiaso worked on the frescoes in the Escorial, an important monastery where much of Spain's Royalty has been entombed over centuries. Cambiasco died at Escorial in 1586. James I visited Escorial in the mid '80s and loved it. After this exhibit there are many more exhibits to come and the permanent collections are wonderful.Mark really enjoyed his trip to the Blanton.

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.

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.

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.

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.

Health Care in a Thailand International Hospital Versus Health Care in the USA: The only difference is the difference between night and day
I (Mark's Mom) once worked as an office nurse for Dr. Tom Masters in Springfield, Illinois. A better doctor never existed. We actually ran our appointments on time. He studied each medicine a new patient was on to determine if the patient benefited from it or not and made certain that each client from the governor and the CEOs whose physicals we did to our elderly nursing home clients and the guys in the jail he and I visited got what they needed and were well informed about their health status and needs. Occasionally, a new client would ask a question like: " Doctor, it wouldn't make any difference if I did "x" instead of the "y" you are suggesting, would it?" Doctor Masters would get a serious expression on his face and peer down at the client and say: "The only difference would be the difference between north and south." That expression comes to mind as I think about the care Mark received at Bumrungrad International Hospital in Bangkok compared to the care he is getting and will likely get at the VA hospital and the care reported to me by friends including nurse friends.

I have to ask "What has happened to nursing (as well as health care) in this country?" The Thai nurses seem 100% compassionate, caring, respectful and always ready to help you. Your IV monitor beeps and you don't have to ring a bell. The nurse or aide comes to fix it. Far too many American nurses give the impression they are way too busy to help anyone, even in situations where I see them chatting with each other and moving at a snail's pace. Recently, when Mark had waited way past his appointment time and been begging to lie down at the VA, a nurse implied he could not be in pain as his blood pressure was not up. Doesn't morphine and compazine lower blood pressure and isn't it possible other factors allow a patient to be in pain without elevated blood pressure? A while later , I asked the nurse if she could estimate how long before Mark would be seen. She said: "I think you can have too much information." Mark finally solved his need to lie down to get relief from pain in his chest due to tissue and bone damage from the chest wall tumor and 15 very recent radiation treatments. He went out into the hall and laid down on the floor. This action caused a flurry of activity and produced a place to lie down in the treatment room. His appointment was at 9 and he was told he must not report in later than 8:30 sharp. He saw the doctors at 12:30 and I must say the doctors were exceedingly respectful and compassionate as were some nurses in the treatment room. By the time Mark left the oncology clinic and waited in line at the pharmacy three times and waited until his number came up to wait in line, it was 4:30 when we left the VA: a long day for a very sick young man who still had to ride the 3 and a half hours back to Austin.

Other stories of nursing care in Austin Texas and elsewhere: After thyroid surgery in Austin, a friend reports that she rang the bell for pain medication. She could not talk above a whisper due to swelling from surgery. The person at the desk said: "Speak up. We can't help you if you don't speak up." No one was sent to check on the patient and pain medication was a long time in coming. Another nurse friend on vacation recently in Colorado had an occluded ureter and could not urinate and was in pain. She reported that the emergency room staff treated her as if she were a drug seeking addict. The nurse who catheterized her, took only a specimen and did not empty the bladder. When asked why she had not emptied the bladder since the patient was unable to urinate and was uncomfortable, the nurse offered to do another catheterization. There also seems to be a rash of people falling off of guerneys or being dropped in transfer from guerney to bed . The hospital staff often say they are way too busy and too overworked to help a patient especially with something like getting a tooth brush out for someone told not to get out of bed after surgery. I had this experience in an Austin Hospital. "Everyone is busy and can't help you." Why did I find this hard to believe when after asking for a hour for the tooth brush whenever someone came into the room, one nursing assistant who was too busy to help me, spent a long time telling me that she had bought a farm and all about the farm and then asked if she could have my potted plant if I didn't want it. A social worker wandered in eventually and got the tooth brushing equipment for me. How can nursing education and nursing texts and journals in the USA claim the nursing profession is still all about compassion, caring, thorough head to toe assessments, and holistic nursing when nurses and nurse's assistants today are "way too busy and overworked to listen to and attend to client's needs "? Today in the USA you never know if you will get a compassionate, caring, competent nurse or a Miss Rachet behave-alike from One Flew Over the CooCoo's Nest or something in between. What's your opinion? I invite comments/stories from anyone who agrees and from those who don't. Your thoughts are important!
PS FROM MARK - "So sorry that I can't answer e-mail right now. I am trying to get the pain under control and get some healing of my chest. When I am able, I will e-mail you all. Thanks for all your support. It means everything to me. " Mark

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.

Last Day in Bangkok Mr Mark has less than 24 hours in Bangkok left. It is 3 pm here and about 4 am, he and his mom head for the airport. Once more he gave away most of his belongings and packed up his clothes and a few gifts that readers of the blog sent him and is prepared to head for the states. He is very sad to leave Bangkok and his doctors here after 21 months of treatment. His doctors have done a wonderful job of keeping him alive. Mark was scheduled for a last minute check at the hospital today but cancelled it saying he needed to save that 100 dollars and he was going on the plane no matter what anyway. Last night he got exhausted with just a small amount of shopping three blocks away and had to come home in the taxi, so I contacted the airport and arranged a wheelchair. He may not use it, but we will be prepared. Wish us luck and good karma as we take off on our 24 hour journey home.

November 8, 2006

Recent Loy Kathong Festival in Thailand Mark was too sick to go to the Loy Kathong Festival this year on Nov. 5th . He planned to go and wanted to go, but he was in too much pain and tired. He went last year. Mom went this year with friends.
This festival, sometimes called yee ping or the festival of lights, has been celebrated since the 13th century and it is believed by some that a young queen Nang Noppamous in ancient Kingdom of Sukhothai made the first small boat with candles and incense and floated it away on the water. Some people believe the ceremony is to express gratitude to the goddess of the water for use of the water and for poluting it and for providing the bounty that comes from the water. Others think it originated as a ceremony to show respect to the Lord Buddha's footprint on the beach of Narmaha River located in India and to the great serpent and creatures of the lower water world.
Loy means to float and Krathong is the lotus shaped man made creations that float on the water. The Krathong is made of layers of the trunk of the banana tree and banana leaves and other plants and flowers and holds a candle and incense both of which are lighted before making wishes and floating it away. This is considered a very romantic occasion for couples as those who wish together are believed to stay together thereafter. Some people put coins on the Krathong and some have told me that they put a bit of hair or nail clippings on the Krathong and believe it floats away their troubles. Large balloon lanterns are also floated away through the air in hopes troubles will float away. This festival is on the full moon day of the 12th lunar month usually in November when the rivers are at their highest level and the moon is bright. (see This Thailand.com Website for more information about the festival.)

Cancer
Brings Bizarre Symptoms and Strange Puzzles...
For months Mark has complained of something in his chest and finally it became big enough to be visable to the eye. Dr. Sunantha Ploysongsang did 15 radiation treatments to the area while Mark was also getting chemotherapy with Dr. Theera Umsawadee. After radiation, there was still a goose egg that at first was hard then soft and looked like a lump coming to the surface. Dr. Sunantha said it could be the tumor liquified or it could be an infection or something else, but using caution she did not want to open it and attempt to drain it. During our trip to Chang Mai you will recall that the evening before returning to Bangkok, the thing burst open and Mark had a lot of green drainage. He went to the hospital immediately on arrival in Bangkok and had an incision with a drain left in. He had a Culture and Sensitivity (C and S). He has been very worried about this whole deal thinking he might get an infection of the bone in the area or something worse. He went on heavy duty antibiotics to cover aerobic or anarobic organisms.
Today he had no drainage for the first time and the tissue is granulating in. The C and S showed only slight candida which would not explain the green drainage. We were all expecting a finding of something like staphlococcus. We are back to the idea of a liquification of the tumor. Doctor had applied the term cellulitis to the small area of redness and slight swelling in the area...but it never looked like the cellulitis I am familiar with in patients hospitalized with this condition. Today Mark showed me the bizarre symptom of gooseflesh (goosebumps) on only his left side of his body and not on the right. So strange to see goosebumps on only one arm.
Mark got a Cat Scan today to see if there are pockets of pus inside yet or anything else out of the ordinary in the chest. He sees the Infectious Disease Doctor tomorrow and hopefully also gets the results of the Cat Scan. For those interested in cost comparison: the cat scan, interpretation, radiologist's fee, Dr. Theera's fee, medication, and out patient facility all came to $371. The OPD fee was $3.33 We would celebrate such a small bill but it is only Monday. We won't get through this week without at least spending $1000-$1500 on medical care. With all this work toward getting to the bottom of the problem and no horrible news so far on his chest problem, Mark seems less worried and has perked up a lot.
Tuesday November 11 Today Mark is more worried and very tired of all the treatments. Dr.Mondej (Mohn Dai) the infectious disease doctor saw Mark and managed to get some yellowish drainage to culture for mycobacterium and other unusual things. The initial look under the microscope revealed nothing but the cultures will take 2-4 weeks. Dr. Mondej showed Mark the rotating view of the cat scan of the chest. There is missing cartiledge and bone and some invasion into the pleural space of the lung. This really depressed Mark. The doctor decided Mark should have something newer and better than Diflucan in case there is monilia albicans further inside his chest. He mentioned it would be expensive. I tried to get him to estimate how much but he ignored me. At the cashiers the price was revealed: $1,000 for a course of this medication for fungal infection. Mark decided to wait until we meet with Dr. Theera and Dr. Sunantha tomorrow.to see if this is absolutely necessary or he can make do with Diflucan at 10 dollars a pill - which is not exactly cheap - until he gets evaluated at the VA in Houston next week.

Chang Mai Royal Flora Ratchaphruck 2006
Mr. Mark, his helper Jin, and I came to Chang Mai to see the International flower exposition. The King has a phenominal involvement in flowers, plants, and agriculture. On a miniscule scale by comparison, Mark loves flower and plants and has some beautiful well cared for ones which he will leave with Jin, along with his parakeet Petey, when he returns to the states.


Day 1 in Chang Mai. Jin and I bought tickets for the tomorrow's day of Royal Flower Expo by standing in a line at the bank for over an hour. First day tickets had been sold out for a week. We went to the Chang Mai zoo and watched the Panda Bears for a long time then headed up the mountain to visit a temple and next a modern, clean store selling beautiful inexpensive produce from the King's farms, where we ordered several kilos of beets and avocados to take back to Bangkok for a friend who is opening a restaurant. On our return to Bangkok we each had a carry on of beets, avocados and some hard to find new red potatoes that we tracked down in the back alleys and warehouses of vegetables: a sharp contrast to the store selling the King's farms produce.

Day 2 (First day of Expo) Jin and I took a long tuk-tuk ride out to the Expo thinking we might get tickets if we stood in line a couple of hours with thousands of people. We encountered no line and got right in. The gates for Thai people and farang (other people) are separate, but I went throught the Thai gate with Jin. We called Mark to meet us but he said he was too sick.

At the Expo we walked for miles viewing flower displays from Japan, Bhutan, Viet Nam, Indonesia, Quatar, Spain, the Netherlands, Africa, etc. There are acres and acres of land and exhibits from many many foreign countries. There is a rubber plantation as well as many buildings and gardens full of spectacular flowers and replicas of the homes of different tribes of Thai indiginous people and music and dancing and water displays and sculptured trees and lawns and beautiful girls in their native dress.

After walking 4 hours, we sat for 3 hours on a grassy hill directly accross from where the Princess would sit for ceremonies and entertainment. We were in a sea of Thai people wearing yellow shirts (yellow is the color of the king). Searching the crowd I could only find two other farang (foreigners)). Foreign dignitaries from all over the world were seated in front of the queen on the approach to the palace like building which had many steps up to it. The arrival of the princess and the entertainment was spectacular. Jin and I were on Thai television waving at the cameraman.

Day 3 (second Expo Day) Mark went to the Expo today to see the orchid named for the Queen and the smallest orchid in the world as well as the rarest ones and the worst smelling one. The special orchids, in two huge air conditioned rooms and adjoining gardens, were spectacular and Mark was fully enjoying seeing them. At one point, I had my back to him. He was sitting on a railing. A lovely Thai lady asked me in perfect English: "What is wrong with him?" I turned around and Mark was slumped over, looked pale, and was having difficulty breathing. He managed to pull himself together enough to drink some orange juice and see a few more orchids that were must see for him and make it to a cab to go back to the hotel. After being in bed the rest of the day, he looks better.

November 3...Mark is in a lot of pain. His chest wall tumor that was radiated opened up and is draining and we head back to Bangkok and chemo again.
Remember that you can post a note to Mark on the blog (Click the "comments" link right below this paragraph). No need to mail him anything in Bangkok as he will soon be in Austin again.