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.

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

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.

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!

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.

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.

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.

Mark is not feeling well after chemo
Received an e-mail from Mark today saying that he is really sick after chemo this time and is having a lot of pain and he said not to expect to hear much from him for a couple of days. He has been lucky in the last few months in having fewer bad days after chemo and lots of good days. When Mark was first on chemotherapy he was really sick and his sister and I were staying with him for blocks of time. At that time, it was hard to tell if it was the cancer or the chemo, but he had such pain and nausea and vomiting and loss of energy and bizarre chills and fevers, weight loss, edema in his feet,hair loss, depression, and he was fussy. We used to call him Mr. Fussy at times as he fussed at us when he did not feel well and then he would suddenly realize how fussy he was and appologize and tell us how much he appreciated all the help we gave him and he would try hard to socialize with us then would go off into bizarre symptoms like the bone shaking chills while sitting on the patio in the blazing Bangkok sun with a wool cap on and wrapped in a blanket warmed in the dryer. Mark has stuck with chemo for 17 months. In spite of periodically being sick and fussy, he has kept his sense of humor and has been very kind to everyone he comes in contact with. He has always dressed up and looked like he was going to a photo shoot for GQ magazine when going to the hospital or the grocery store. He looks more like the staff than a patient when he goes to the hospital. He hangs in there and sets a good role model for all of us as our daily tribulations seem small compared to his. In a couple of months he will get another CAT scan. The last one was a birthday present and the next one may be a present on his sister's birthday (September 1).

Mark,Mom,and Sister Stephanie in front of the picture of the Thailand King in Mark's condominium lobby when we last were all three together at Spring break

Mr.Mark called me today from his hospital room at Bumrungrad Hospital
Mark is currently getting a three day regimen of chemotherapy.Since his creatinine clearance is a little off normal, his platinol has been decreased and the doctor is considering shifting from Platinol to carboplatin to make it easier on Mark's kidneys. Don't forget Mark. He needs support more than ever.It is the support of friends and strangers that keeps him alive as he wages a battle against liver cancer (a metastasis from the primary tumor which is now gone.) Your support means everything to Mark. Your support can keep him going in his battle against cancer. You can donate to his treatment fund by sending a check to the Highland Park Baptist Church in Austin. (See instructions in the right hand column.) It will help keep him in treatment until medicare kicks in next April and we can bring him home. If we run out of money he will come home sooner.
The King of Thailand is celebrating 60 years on the throne Mark tells me that the beloved King of Thailand, who is the longest reigning monarch in the world, declared that all streets in Bangkok would be clean for the celebration of his 60 years on the throne and people made sure that every scrap of paper and speck of dirt was off the streets and they did not let any dogs on the streets to make sure the streets were clean . Royalty from all over the world were in Thailand to join in the celebration. The King's royal color is yellow so every Thailand citizen and foreigners small enough to find a shirt to fit them bought a yellow shirt and the country was a sea of yellow. The King rode the royal barge down the Cho Phyra River with other royals on board. Citizens turned out by the thousands to see their King and the foreign royals and a huge firewords display. All Thai people love the King and there are pictures of him everywhere. There is a huge picture of the king in the lobby of Mark's condominium. Each day there are fresh flowers in front of the picture of the King. Several months ago James (Mark's Aggie stepfather) was sitting in the lobby of the condominium off and on for several days and he thought that the Thai people were very friendly as they made a wai (y) for him by putting their hands together and bowing. Later he found out that the Thai people were greeting the picture of the King in a sign of respect. Thai, no matter how rich or how poor,are proud to be Thai and often say: "Farang (foreigner)if you lucky in the next life, you be born Thai.
Training a Parakeet
This is the continued Saga of Kuhn Petey bird.This is the miracle bird that I found outside my 11th story bedroom in Bangkok. He was sitting outside the window looking at himself in the glass (see earlier story). Mark told me this week that after cooing to Kuhn Petey for weeks and months to get him to talk and putting his finger in the cage and cooing to get Petey to sit on his finger, he got tired of cooing and just grabbed Petey and put him on his finger and after a couple of times Petey got the picture and now will ride around on Mark's finger and come back to the finger when Mark turns him loose in my bedroom to fly around. Hmm there may be a behavior modification principle in here somewhere.

On Wednesday Mark was evaluated for cyberknife and it was a positive experience in many ways. I am very grateful to Dr. Wilson and nurse Catherine for their kind treatment, positive attitudes, and professional manner and the time they each spent with Mark and I. It was one of the best medical experiences I have had in my life time and yet Mark is not to have cyberknife, at least not yet. I'll let you read what Mark wrote about it.

Thursday November 17, 2005
Dear friends, Just to let you know I was evaluated for the cyberknife yesterday and was expecting bad news like the cancer is too advanced or something like that to indicate I was not a candidate for cyberknife, but no...not at all. Mom and I were in the waiting room waiting to see Dr. Wilson. I was filing out the forms for the cyberknife evaluation and talking with a fine gentleman, who is in the process of cyberknife treatments, and his wife. He is over 65 and has battled several sites of cancer and continues to battle cancer and other health problems. He has Medicare and even Blue Cross that pays for cyberknife. I sat there across from him in the waiting room, happy he can have cyberknife. He tells me it is wonderful. It doesn't hurt. It has reduced his pain a lot and he is happy. He highly recomends the cyberknife. I am worried the doctor will say I am too far gone for this treatment. Mom is worried too. In the evaluation, Dr Wilson spent a lot of time with us and was very encouraging. He went over my CAT scans of February and September and showed me that the liver cancer had shrank considerably through chemotherapy. He told me I could have cyberknife and it would reduce my pain and diminish my liver tumors further and cut off blood suppy to the tumors, but it would not cure...I would have to continue chemotherapy...So I was all encouraged thinking maybe I could get my pain at a bearable level and the tumors to a point the chemo might finish them off. Then the bad news came out. Cyberknife would cost me 50,000 dollars. Mom was going to give me $15,000 if that were the cost, but it turns out that the cyberknife costs around $15,000 only if medicare pays because the hospital, and probably the doctors too, take medicare assignment and that is all medicare will pay. If you are on private pay, cash out of your pocket the cost is around $50,000. That is a lot of money. You know I am too young for medicare, but I don't have to wait until I am 65. I have to wait two years after applying for SSDI to get on Medicare. I can have Medicare and get cyberknife in Spring 2007, about 16 months from now.I don't know if cancer will let me wait. If I had kidney dialysis or Lou Gherigs Disease, I could have medicare immediately without waiting as these are the two exceptions to the two year wait for Medicare. If I were over 65, I could have Medicare at the next enrollment period which is January. I can's help but ask: "What kind of system is this in which young people with cancer, who are in their working prime have to wait two years for government help to kill the cancer and go back to work? Most will probably be dead from the cancer before the system kicks in. I guess I should be thankful that if I can keep myself alive for 16 months or so by keeping my cancer under control through paying out of pocket for ongoing chemotherapy and dealing with feeling awful from the chemo and endure the pain , I can hopefully have Medicare and cyberknife.
People in the states keep asking me why I don't get treatment in the United States instead of in Bangkok. The answer to this question is simple: I can't afford treatment in the states. I head back to Bangkok on Tuesday to be treated there. Cancer is a full time job and I am working overtime. Mark

Mark called this morning at 5:30 am. I was already up and eating breakfast as I am working today at 7 am to make some money to help Mark out with his expenses. He had a cat scan yesterday and is awaiting the results. He had some kind of contrast dye put into a vein in his hand and the vein was blown, infiltrated, and he has been uncomfortable with it and it wakes him sometimes from sleep.
Mark was in a mood to talk business today and we went over his finances on the phone. He wants to stay in Bangkok as long as he can as he has great confidence in his doctors, nurses, and the hospital. He will come back to the USA when he runs out of money and his fear is that he will not be able to access care as easily as he can in Bangkok.
We were discussing his hospital bills. I noted that there was an early x-ray that cost 230 baht which is under 6 dollars. The radiologist fee for reading this x-ray was 115 baht or just over $2.50. The radiation was about 300 dollars a treatment which he had daily for awhile. The neuclear medicine radiologists fee was just under 50 dollars a visit. The chemo doctor's fee is about 25 dollars a visit. Ultra sound was about 125 dollars. An overnight stay was $275 for the room. Three days of chemotherapy seem to cost about a thousand dollars because everything is billed and that includes bills for nursing service, doctor's fees, the room, IV's, chemo drugs, antinausea drugs, various pills and lab work. Drinking a pepsi out of the stocked refrigerator in the patient room costs less than 50 cents. While many things are cheaper than the USA, some things like pain medication are extremely expensive compared to the USA. The nurses and doctors are extremely respectful to and kind to the patients. Every staff member is professionally dressed. The nurses wear caps and answer the client's light within seconds. One of Mark's bills was for about 400 dollars for the radiation doc. Mark explained this was for several visits and it was worth it in his mind as the radiation doc knew her business and early on shrank his tumor and made it possible for him to eat solid food after being on liquids due to the size of the tumor compressing his esophagus. Mark also said: "And after all Mom you can't even hardly buy a set of tires for $400. "

Waiting to hear if the eye doctor will let him fly...
to Austin from Bangkok for a visit here soon, and if he is feeling well enough to fly and if he or I can find enough air miles for him to get a ticket so he can reserve his cash for treatment. He is a little worried he will run out of money for treatment. About a month after he started treatment for cancer with an initial prognosis from doctors on Saipan of only 3 months to live, someone asked Mark if he had enough money to live on and get treatment and he said: "If I die in two months I have too much money and if I live much longer I don't have enough." Of course he is headed into his 7th month after diagnosis.

Early this year, generous co-workers on Saipan donated him their sick time. Recently my workplace, Community Clinical Research, wired money which covered a three day chemotherapy treatment and sent him a care package too. Very early on friends on Saipan gave him money for treatment, and three of my former co-workers at ACC sent money and of course I have given him funds, and some of you reading this have sent him gifts, money, Koolaide, candy and prayers. Every one of these gift from the heart have greatly helped his spirits and his ability to stay in chemotherapy and to keep his hope up. Thank-you all.

Today I looked at the pictures (see above) I took of Mark and I sailing in the San Juan Islands in March of 2003 and pictures of him in March 2005 and I can see the toll that chemo and cancer have taken....the loss of hair...the loss of color in his skin...the loss of energy. Sometimes he looks really sick and sometimes he still looks great even today without his handsome head of wavy hair. He still has his sense of humor and can make us laugh. He still dresses up when he goes somewhere and looks as much like a G.Q. model as he can muster.

Mark is at a crossroads in which his doing radiation and continuing to do chemotherapy and all the prayers could help him get better or he could die way too young at 45. Mark yearns to have more adventures and I think that is why he continues to go for chemotherapy when it makes him so sick for days and drains him financially. I have reminded him that he has had more adventures than most people have in a lifetime and he has a lot of great memories of trips we took to various parts of Honduras and to the Moskito Coast of Nicaragua and Honduras volunteering with MEDICO, our trips to sailing schools and chartering a sailboat to go watch whales in the San Juan Islands, fishing in Cabo San Lucas and Cabo San Jose, trips to Cambodia, adventures in Thailand, Scuba diving off Roatan, and years ago when we lived in the country: riding motorcycles and camping out and shooting muzzleloading guns and throwing tomahawks at a number of National Muzzle Loading Competitions in Friendship, Indiana.

Yes, we have had a lot of adventures together and then too, he has had a lot of adventures without me; perhaps adventures with some of you who are reading this.

I hope Mark has many more adventures and I am ready to help him plan another adventure soon. One of his expressions when we get into a tight spot or a strange situation when we are off the beaten path is: "and the adventure continues." And so it does.

Contact MissBettythemom at bkrich@sbcglobal.net if you want to send Mark a postcard from somewhere in the world or you want to send him some sour candy or send a small contribution to help with chemo or to buy ice cream.

Mark has had laser surgery on his eye.

He is no longer sick from the last round of chemotherapy. I am waiting to hear the latest news on his vision and on the eye that has had a problem. He is eating again and has gained weight. He is cooking again and reading again. He tries to get the books with print that is not so small. Those of you who are, lets not say older but just more mature, will understand the problem. Some novels have very tiny print and some have larger print.

Treatment for cancer is a roller coster. Sometimes Mark is sick for days and eats very little if anything and is not capable of doing anything. He suffers from extreme coldness and chills at times and sits out in the hot Bangkok sun with a wool hat and a blanket. Other times he is extremely hot and can't stand heat. As he gets further away from a chemo round, he is much more lively and attending to things like getting the drapes cleaned or cooking a gourmet meal, and eating to put on weight for the next round. Why not stop all the chemo? The doctor found him in very bad shape when he first saw him in Feb. He could not swallow solid food. His tumors were large, his liver swollen and after about three months of treatment a CAT scan showed his primary tumor reduced in size, his liver much improved and he was able to eat solid food. He is a guy who was given three months to live and has now passed six months. My hat is off to Mark for going through treatment. He has a lot of grit.