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.

Mr.Mark is out of the hospital and we leave for Chang Mai today. Two days ago Mark got up and made himself a ham and cheese sandwich just like he likes it (Japanese mayo on one slice of bread and dijon mustard on the other) and prepared himself a sack lunch, headed for chemotherapy at Bumrungrad expecting to come home that night (Saturday), but Dr. Theera decided to keep him overnight. Mark had been sick, not eating anything without it coming up and/or out for a week, and was somewhat dehydrated.

The medication regimen has changed: Metochlorpramide 10 mg IV(Plasil), Paraplatin 450 (Carboplatin), Leucovorin two doses one of 100 mg and one of 50 mg., Mag sulfate, Manitol, Emend, Nausea, Benadryl, KCL, and one 1 mg tablet of Ativan (4 baht about 12 cents). Mark tries to refuse the ativan even though it is cheap, but says the Emend for nausea is worth every penny it costs (1 dose =1,615 baht= 46 dollars) as it stops nausea really well. The Leucovorin serves many purposes. It helps in folic acid deficency, potentiates 5FU (not sure if Mark is on 5FU or not), lowers levels of circulating estrogen, and is used in treating breast cancer in post menopausal women. Remember that men can get breast cancer. Men have breast tissue and circulating levels of estrogen as well as testosterone. Women have both hormones also but they don't get prostate cancer as that part is missing.

Without hospitalization the prior week, a weekly round of chemo was about 200 dollars, but with hospitalization, extra medication, extra IV set ups, out patient charge and inpatient charge, and the nursing fees, etc. the bill this week was 44,257 Baht. The exchange rate at the hospital into dollars is 35.3356 so one weekly round of chemo with hospitalization was approx. 1,320 dollars. nothing on the bill is as expensive as in the USA but everything adds up. This bill is in addition to two or three office visits to see Mark's two doctors (Sunantha for radiation and Theera Umsawadee for chemo). Mark is very happy with his doctors and his treatment in Thailand and wishes he could stay here but we must head for the VA in Houston soon to cut our expenses, get some additional evaluation, a treatment plan, and get it going. For those friends and family who have asked, there is a tax-deductible fund for Mark's care - see the link on the right side of this page. We have now spent over $200,000 out of pocket on this, and I am thrilled at the extra time it has given us with Mark. (From Mark's sister, Stephanie: for those who don't know, my mom has been retired but has also been working several jobs where she can to help pay for Mark's treatment. Even if you're just sending a dollar, it helps her to see that people care. Same for visiting the blog - she loves seeing the numbers go up, and for leaving comments here on the blog... it all just lets us know we are not alone in this difficult time. Mom doesn't know I am adding this, from the bolded sentence on, to the blog.)

We are taking our suitcases to the hospital today as Mark has an appointment with Dr. Sunantha. We're cutting it close as usual and must make a flying taxi trip to the new airport as Mark has changed our time of departure for Chang Mai and we are cutting it close. He is excited about the trip and it has really perked him up. We got cheap tickets of $108 each including hotel transportation. We have rooms at 25 dollars each including a full breakfast buffet. The international flower show is our big objective. More on that in next blog.

Mark Continues Radiation and Now Weekly Chemo
Mark is in Bangkok until November 14th working on closing out his lease to get his deposit back and saying Good-bye to friends, his treatment team, and the city he loves. If he were wealthy, he would stay in Bangkok longer. His doctors there have kept him alive 21 months when he was given three months or less to live at the time he was first diagnosed on the island of Saipan. He is so thankful to have good doctors.

Dr. Theera now has Mark on weekly chemotherapy of smaller doses instead of monthly larger doses and radiation is daily until he has received 15 treatments. This is of course expensive even though the price at Bumrungrad is far less than it would be in the states. Mark's sister called Mom from Japan, yesterday and caught her coming back from a high school reunion (another interesting story). Mark had not been able to reach mom and he couldn't access a small account he has to pay for treatment (His card would not work) and what to do to pay for his treatment on Thursday? Luckily mom has a small account in Bangkok too so she gave Mark the card but not the password before he left Texas for Bangkok. A sharing of the password gets this week's treatment paid for and then the thinking cap is on about paying next week.

Mark's sister is traveling in Japan this week. Mom just got back from high school reunion and heads to Miami Sunday before going to Bangkok on the 24th. We all keep in touch about every day with very low cost phone calls using our computers to call cell phones. What a wonderful technology-friendly time we live in!

Up and Down the Cancer Roller Coaster Some More...

(From Stephanie:)Today Mark had radiation again; he's feeling a lot of pain and says he's hot but also is covered by a blanket and trying to rest. He is getting 2-4 hours a day of activity and the rest of the time he sticks close to home and sleeps or wanders the apartment. He looks so good that people (myself included) forget how hard it is for him to get through the days.

As the photo shows, we packed up most of Mark's belongings and I took them to the Enbassy to mail home. He had to get rid of about everything to move here in the first place, so I was more than happy to be able to help him keep some things that mean something to him. The folks there at the post office were very nice and helpful; it wasn't entirely easy to lug 7 boxes around, but we got it done! I am hoping that this will help Mom and Mark have an easy move back to Texas in a month. Ideally, Mark would be able to mail more and could just step onto the plane with a carry on and not worry about anything else, but the Thai mail is crazy expensive... I think the hardest part of this is just that he loves Bangkok and hates to leave - he knows he has to, but he's not sure he will be back. It's been a great place for him to receive such good care. Anyway, we're all feeling good that we got the boxes mailed, but also melancholy at the thought of a move where there are so many unknowns; another adventure, perhaps?

A funny story from today: We'd stopped at the hospital and while Mark was in radiation, I stopped by to chat with Dr. Theera and thank him for the great care. I made sure he had this blog address. Then, a little while later, Mark met up with me and said he'd stoped to say hi to Dr T and ask him how he (Mark) was doing, and Dr T answered "I don't know, I haven't had a chance to check your blog for the latest"! Funny, but now Mark has a great idea to have patients blog their symptoms and progress and have docs check it before visits so patients don't have to repeat things to docs so often. Hmmm....

Click that little green "comments" link below here to leave us a note- I would LOVE to see who is checking the blog out! Stephanie

Mark in Good Spirits in Radiation
(Stephanie:) I arrived in Bangkok on the opening day of the new airport, Thursday. I went to see Mark in the hospital and found him awake and feeling good Friday at 7 am, despite having felt terrible the day before... he seems to thrive on the chemotherapy. Mark's doctors have changed his regimen a little lately - he will be doing chemo more often but for fewer days each time. He's also doing radiation, and as you can see from the photo above, we went to radiation today. I was able to watch as they set up Mark's radiation, and I learned that each patient has their own custom alloy "plate" that fits into the machine just above their radiation site. The radiation goes through a hole in the plate, and this guides how far/wide the radiation will go into the patient. You can see Mark's in the photo - it's a silver "circle" about 4 inches in diameter. I saw some of the other plates, too - all cut out in different shapes and thicknesses.

Mr. Mark tickled over a sign on dragon statue in Chang Mai.
Dragon statue named "Mom".
Within hours of the tanks appearing in Bangkok Mark took a flight to Chang Mai. He reported having 4 days there in which he felt "normal." He said he interspersed sight seeing by taxi with a number of well spaced naps. With the help of Jin, who looks after him in Thailand, he is trying to see everything and everyone he can in case his cancer gets ahead of his treatment and all your prayers and any miracles that might occur. On the other hand he is doing everything he can to fight the cancer while he closes out his condo and packs things for home.
Mark's sister Stephanie is flying to Thailand from Japan, She is due there tomorrow. As a department of defense employee, she can ship some of Mark's belongings to Texas through the embassy at a US postage rate.
Few minutes past midnight Wednesday Sept. 27, 2006
Talked with Mark early this am in Bangkok for a few minutes (midnight in Austin and 12 noon in Thailand). He was on his way to get radiation to his chest wall cancer. This involves having a mold made at 200 dollars and 15 treatments at 75 dollars each for about a total of 1300 dollars. He is concerned that cancer has invaded bone and there are other cancer locations in bone. He's also concerned he will not have access to as good care in Texas as he has in Bangkok where he sees the doctors frequently and is only a 50 cent taxi ride away from the hospital cancer center. On the other hand he is concerned that he not wait too long to leave Bangkok and get so sick he ends up in intensive care with a huge bill there that has to be paid immediately.
Talked with Mark again at 8 am this morning and he said in addition to 15 days of radiation, he would also get a round of chemo (3 days of chemo)starting about 8 pm Austin time and he would again be in the hospital overnight. The chemotherapy drugs are going to be somewhat different this time although his liver and kidney function tests are back to "good."

Mr. Mark was able to leave Bangkok within hours of the tanks surrounding Bangkok and take a flight to Chang Mai. Jin, who looks after him, found a place to stay and this was his big chance. Mark is trying to see everything and everyone he can in case his cancer gets ahead of his treatment and all your prayers and any miracles that might occur.
Mark's sister Stephanie is flying to Thailand from Japan and is due there tomorrow. Through the American Embassy, as a department of defense employee, she can ship some of Mark's belongings to Texas in preparation for his closing out the condo and coming home.
Few minutes past midnight Wednesday Sept. 27, 2006
Talked with Mark in Bangkok for a few minutes (midnight in Austin and 12 noon in Thailand) and he was on his way to get radiation to his chest wall cancer. This involves having some sort of mold made at 200 dollars and 15 treatments at 75 dollars each for about a total of about 1300 dollars. He is concerned that cancer has invaded bone and there may be other cancer locations in bone. Mark is concerned he will not have as good an access to care in Texas as he has in Bangkok where he sees the doctors frequently and is only a 50 cent taxi ride away from his doctors, but on the other hand he is concerned that he not wait too long to leave Bangkok and get so sick he ends up in intensive care with a huge bill there that has to be paid immediately. Stay tuned for more information.

Pictures taken by Mark Richardson Coup D'etat In Bangkok Thailand and Mark is There in the Heart of the City
Mr. Mark's mom, at the beauty shop, suddenly got calls on her cell phone; people calling to report that tanks were surrounding Bangkok as part of a coup d'etat. It was the middle of the Bangkok night (12 hours difference in Austin Texas and Bangkok time), but Mr. Mark was up watching TV when his mom called to check on the situation there. He knew nothing of the coup or the tanks as the Thai TV news was not being shown at that time. The stations normally having ongoing news were not available. A little latter the news was on in Bangkok. We soon learned the banks, schools, and government offices would be closed. There were tanks and road blocks around the city. At first the flights out seemed to be cancelled and Mark is due to fly to Chang Mai on another adventure in just a few hours. The Baht is falling in value some and Mark called his old room mate from Dallas who is a bank examiner and asked him about whether he would be better off to pay bills in dollars or baht. Next, Mark decided to see if he could get a taxi and go take some pictures. He was excited to be in Bangkok in the middle of a coup and reminded me that he and I had been in Saipan typoon Chaba and he had been in on the erruption of a volcano somewhere and we had volunteered in Honduras after a hurricane and wasn't he lucky to be where the action was so often? He soon learned that Thailand had experienced a coup about 15 years ago and the local people were not excited about this one and in fact some Thais had told him to go to sleep and not worry about it. He thinks he will be able to fly to Chang Mai on a two day trip, which is another adventure he is getting in while he is still able. Mark thrives on adventures. He is in Thailand to close out his condominium lease and give away some belongings and pack a few others. He had to give a two month notice in order to get a deposit back and is scheduled to come back to Austin for good on or before the 14th of November. He is not sure his cancer situation will let him stay that long....but isn't he lucky to be in on this major happening/adventure in Thailand: a coup d'etat?

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.

Mark at Michael Debakey Veterans Hospital Houston Oncology Service 9/1/05 It was a long hard day for Mark with the drive to Houston, two hours with Drs Wong and Epner in Oncology; an hour getting prescriptions (nausea, vomiting, and pain); two hours in rush hour Houston traffic, and the ride home: a long hard day.
VA medical benefits and care seem to have improved over the past few years. Once you get past the initial hoops at the Houston VA, appointments and care seem not to require the long waits. There is ongoing effort at the Houston VA to make things easier and better for veterans and employees. The hospital is seeking redesignation as a Magnet Hospital. We were impressed and happy with the time Drs Wong and Epner spent with Mark and their straight forward talk with Mark and I. Note: In the photo above,Mark has the booklet about VA benefits under his arm. We are learning a lot about cancer and a lot about VA benefits and how to access them.

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.

Another Trip to the VA in Houston
Left at 9 am headed to Houston for a 2 pm appointment at the VA with a primary care provider who takes the health history; a requirement before you get an appointment with an oncologist. The physician's assistant spent 10 minutes with Mark and gave him a Sept. 1st appointment. We drove back to Austin arriving home at 6 pm having spent minutes in Houston. Wouldn't it have been great if Mark could have seen the PA on Monday or Tuesday when we were at the VA all day each day; but no amount of pleading could make this happen. All hoops must be jumped when the VA staff says to jump. Mark has taken this in stride with no complaints as he wants to see if the VA is a possibility for treatment, so he could come home. It's a challenge not having insurance.
PS August 28 The VA may not be as bad as the private sector. A friend of mine with insurance is trying to get her husband, who has some very serious symptoms, in to see a specialist in Austin Texas and it takes a month or more to get an appointment.

August 15 Mr.Mark's two days in waiting rooms at the Veteran's Medical Center in Houston
We drove to Houston on Sunday and were at the VA by 7:30 a.m. Monday. Two people were ahead of Mark to register for services and "a card." After an hour it was Mark's turn to be waited on. Another two hours in triage before he was called for his vital signs, after another two hours the standing BP nurse took his standing BP and after four more hours Mark was given an appointment to see a primary doctor on Thursday. All around us in the waiting rooms, veterans were grumbling about the long waits. An active duty man was there in triage to get a TB skin test. He had to wait the four hours and get vital signs after two and standing BP after two more while all the time telling staff he just wanted a TB skin test. I could have given him one in two minutes time, but no one escapes jumping the hoops or doing all the wickets. One lady said she was told by a staff person to stop grumbling about the wait as her husband was getting free care. She claims she told the staff that her husband paid for the care with two tours in Viet Nam. I smiled at people and talked to them. One man in a wheelchair, who introduced himself as Nathan, kissed my hand four times for stopping to talk to him and said he and I were family now. Tuesday, Mark went back and managed to talk people into letting him see a doc who was very nice, but he still has to come back on Thursday to see his assigned primary care provider for the first time and to get an appointment to see an oncologist. Mark has a personal letter of referral, from his doctor in Bangkok who used to work at the VA in Houston and at MD Anderson. If Mark is lucky he will be able to see an oncologist before he is due to go back to Bangkok. Highlights of our trip included finding an authentic Mexican restaurant close to our motel and open 24 hours a day, that has great crispy tacos and seeing the Cubs play the Astros in an airconditioned stadium.
August 11
Mr. Mark arrived in Austin this afternoon. It took 24 hours of travel to get home. He was tired, hurting, and ready to take a rest. but he stayed up long enough to eat a Schlotsky's original sandwich. Mark is making a list of places he wants to eat at in Austin. He says he has not been eating out in Bangkok due to watching his money and his energies.
Mark is very concerned that he has a tumor on his chest near or on the sternum which is palpable.
We are headed Sunday for Houston to check in at the Veterans Administration Hospital on Monday to see if the VA can do anything for him.

Fear:Cancer's dark shadow and companion.
While Mr. Mark is very brave, he still has his fears: fear the MRI will bring bad news, fear his chest pain or kidney problems are due to metastasis, fears about finances, fears he will get worse or die before he gets to do some things he wants to do like go to some major league baseball games, go camping with his friend Allen, sail again, and work with me on a novel, and fears that I know nothing about.

He is fearful he will get worse and not be able to come home so we are bringing him home this coming Friday. There are no inexpensive tickets at this time and nothing in the Fall, so far. After he researched and researched tickets as did I, we decided to bite the bullet and just charge the ticket. Uncle Bob and Aunt Dorothy sent money to help as did friend Mark Foster and MEDICO's executive director Lynda Peters. Mark and I will find the rest.

Mr. Mark is so encouraged and cheered up by people writing him notes and helping him. His goal is to get his own apartment in the states and work again. Dr. Theera told him a couple of weeks ago that he has a 50% chance of living a year which really depressed him at first, but his sister, Stephanie, reminded him that he was told 18 months ago that he had three months or less to live. We hope Mark will continue to stretch those percentages and predictions to their outer limits.

Stephanie made some calls to the Veteran's administration and yesterday she and I were in Houston to visit the new VA hospital associated with the Baylor school of Medicine and MD Anderson. Mark's doctor in Thailand was a medical officer at the VA in Houston at one time and is acquainted with medical personnel there. Dr. Theera understands that at some point in time we could run out of money to pay cash for treatment in Thailand. While we are dealing with one day at a time and one problem at a time, we have to think about the future too.

A few days ago Mr. Mark and I talked accross the long distance from Austin Texas to Bangkok, Thailand. He had just come in from a walk in the park. "Sweating and starving" were his answers to the question: "How are you?" Much better to be sweating and hungry than to be depressed. Mark has gotten mail from some of you that has cheered him immensely. Thank-you for anything you do to cheer Mark up and/or for your prayers and positive thoughts for him.

Call for a MAIL BLITZ to Mark, Who is Hitting a New Low in Spirits
After 17 months of chemo, feeling alone in Bangkok, no cure in sight,facing more chemo,a shortened life span, too much time on his hands to think negative thoughts about an uncertain future, and frustrating computer problems, Mr.Mark needs to hear from all of us letting him know we care.Tell him about your dog, pet taramtula or gecko, your kids, your job or something funny that happened to you. If you want to draw your own card or just write a note, take the money saved on a card and enclose it and seal it good with tape. Mark is excited when someone encloses a little money, but he loves just to hear from people. Mail is better than e-mail because he can displays it. He has poems and pictures on his refrigerator and pictures on his bedroom mirror and cards and letters on shelves. Let's flood his box with mail to cheer him up. The address is Mark Richardson Condo 6/11, Las Colinas Condominiums, 6 Sukhumvit 21 (AsokeRoad), Wattana Bangkok, Thailand 10110. This takes 84 cents postage.

Updates on Everyone: Mr. Mark (Bangkok), Miss Stephanie (England) and the Austin crew: Mr. James, Miss Betty the Mom, Mark's friend Bruce(All the cartoon characters) Plus Mr. Frank)
Mr. Mark has bounced back after chemo although worried he looked jaundiced in the mirror a couple of days ago. Dr. T. said the lab tests are ok. Mark talks to his friend Bruce in Austin on the computer. Bruce asked if Mark wanted to play chess on the computer and Mark said he had not played for 20 years. Bruce says that "Mr.Rusty" had him to check-mate in 10 minutes, so he is looking for a different game to challenge Mark to. Speaking of years ago, I found Mark's first SCUBA card, from 1970, when he was 16, today; we'd given it up for lost years ago. Mark actually got another card somewhere along the line years after the first one, perhaps when he and I were on Roatan diving with the crew from Till's dive shop and some guys from Holland.
Stephanie is in England, about four hours from London, in Plymouth studying educational technology and enjoying the local culture. She told me that the food is great and this time in college she can afford to eat unlike when she was in UT and was a starving college student. Her favorite aspects of Plymouth, though, are the wonderful people and their love of history.
James (Mark's step-father figure, Aggie from the Panhandle) has found a new way to make popcorn. While I was gone James decided to make popcorn. He got distracted before he got the lid on the popcorn pan. Watching TV he was thinking this was some sort of gormet popcorn as it was popping so well and so loud. When he got to the kitchen- the stove, counter, and floors were covered with popcorn.
I (Mark's mom, Betty) am still finishing two text books due on the shelves this fall and I passed my ACLS for all you medical types who know what ACLS is. See information on Miss Betty's textbook(s) at http://www.allbookstores.com/book/compare/1401838472.
Mr. Frank Mr. Frank is a little older than Mark and still a young man by my standards. Frank was recently diagnosed with essentially the same esophageal gastric adenocarinoma as Mark had, but without the secondary liver cancer. Frank expressed surprise that Mark got esophogeal gastric cancer so young as it usually is diagnosed in men in their 50's and 60's. Frank is sharing his experience, with Adenocarcenoma of the esophageal gastric juncture, with Mark and I. Frank went to MD Anderson for evaluation and the plan is for him to get six weeks of weekly chemo: Cysplatin, 5FU, and Taxotere in Austin. This is a different time schedule and a different drug regimen than Mark. Frank has had his first round of chemo and will soon have radiation in the same week as chemo. After the tumor is shrank or gone, he will return to MD Anderson and the area of the esophagus where the tumor was will be cut out and the esophagus sewn (reanastamosed) to the upper portion of the stomach. We will follow Mr. Frank's progress along with Mark's progress.
If you have cancer or friends/family with cancer, keep Mark and me posted about your treatment. We are interested in you and want to support you in whatever way we can. Here is a good British site to look up different types of cancer http://www.cancerbackup.org.uk/Cancertype. I clicked on secondary liver cancer on this site and relearned that the cells that metastacize to a different site are the same type of cells as the original site. This means that secondary liver cancer will respond to the same treatment that your original cancer tumor responded to. Secondary liver cancer is very common according to the experts on this. Mark would love to communicate with someone who is being treated for secondary liver cancer.
Stay positive at all times and find a way to enjoy each minute of your life or at least to convince yourself that you are enjoying it. Perception is what is important. It is perception, not reality, that we act on. If you think you are enjoying the minute, you are. If you are barfing in a plastic bag in the back of a taxi, be thankful you had the forsight to bring a bag and find some humor in the situation. Keeping stress and negative thoughts down helps you stay well or get well.
POST SCRIPT: August 28th. Ross with Lung Cancer is reported free of lung cancer. He had one round of chemo with a horrible reaction to chemo but miracle of miracles...he is said to now be free of lung cancer.