Monday June 4, 2007 Mark is in Houston at the VA getting chemotherapy as this is being typed.After chemotherapy three days in a row we will go back to Austin, Tx. on Wednesday. His doctor Dr. Xu (pronounced Shoe) who is from China, reported that Mark's liver tumors have shrank slightly between the recent Cat Scan and the prior one. His kidney function is slightly improved. Dr.Xu suggested getting two rounds of chemo and then get another Cat Scan. Mark is somewhat exhausted and looked very depressed today after talking to Dr. Xu. He told the doctor he was doing great but the reality is that he has not been eating or sleeping well. He will probably bounce back again soon.He has seen Dr. Xu twice but this is his last visit with Dr. Xu because Dr is leaving for New York at the end of the month.

Mark's treatment at the VA is not free. Mark pays co-payments for medications, which is not a problem. Almost everyone in America pays co-payments for medication. The problem is that the VA Benefits department wants Mark to retroactively co-pay on all doctor visits and chemotherapy and procedures back to August 2006 based on 2005 income which was already long ago spent for treatment in Thailand. After diagnosis of cancer in early Feb 2005 Mark never worked again. Social Security Disability began April 2005. Co-workers on Saipan donated sick time Feb to June 05, money that paid for treatment at the hospital in Thailand. He spent it all on treatment and ran out of money. He has had no income except social security disability since mid 2005, but his co-payments for 2006-7 August to August are based on his income in 2005 and his health care costs. Mom sent an official letter from the hospital in Thailand stating Mark's cash payments in all of 2005. That did not satisfy the VA so Mom is now copying a pile of receipts for each and every service in 2005. Nothing is free, sometimes it is less free, and sometimes it is not even reasonable.

Mark is growing a beautiful garden in flower pots on our decks
Mark has been quite sick off and on during the last two weeks, but he is still faithfully watering and fertilizing his tomato plants which consist of regular sized tomato plants, one tomatillo plant and one cherry tomato plant. They are in great shape and we are harvesting some cherry tomatoes.

Mark helped James build a stairway from a porch to the deck today.

May 31, 2007
Mark was up and working around the house inside and out. Yesterday he was vomiting and had to postpone a visit to the eye doctor. He wants new glasses to help him read better and a check up since he had some major eye problem in Bangkok last year that had him temporarily blind and required some painful procedures and being grounded from flying and having to sit and lie a certain way. At first the docs thought his cancer had spread to the eye, but it turned out to be something different.
People from 53 countries have now seen the blog. See below for list of 52 or check the flag board on the right. The new country signed on is Cote D'Ivorie. Do you know someone in another country that you could ask to click onto the blog? Let's add some more flags for Mark.


Mark and Jerry Barrett discuss books and films and a possible part for Mark in Jerry's next film. They are at our neighbor's retirement party. The retiree Keith got several lovely retirement presents; he tried on a gift retirement hat. Click on any picture to make it bigger.

Saturday June 2, 2007
Tonight our British neighbor Keith, who became an American citizen sometime ago, had a retirement party He is taking early retirment from Hewlit Packard and had a big party. Mark helped him with just a few party details as did his friends Valorie, Rachel, Jessie, and others. It may have been the social event of the year. He sets a new standard for the neighborhood parties.

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 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.

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.