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.

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 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).

Bumrungrad Hospital and its Horizon Cancer Center
When I arrived in Thailand March 7, 2005 Mark's sister, Stephanie, had been with Mark about a week and our visits overlapped a few days. Mark has had radiation most days since I arrived. We have spent a good bit of time in the hospital's Horizon Cancer Center. The hospital is impressive. This is a world class hospital accredited by the Joint Commision International. People come to this hospital from all over the world. The hospital is extremely modern and beautifully decorated. Complementary hot and cold tea and bottled water is provided in the waiting areas for visitors and patients. There are beautiful flower arrangements in many locations throughout the hospital. The nurses answer the call bell promptly, are polite, professional, competent, and wear nurse's caps.
There are restaurants in the hospital - Starbucks, a nice Italian restaurant, a Japanese restaurant, Au Bon Pain, and many Asian places. Not only are there banks of elevators but escalators as well. At the international help desk, there are usually about 10 translators to help you in a variety of languages.
Each day Mark pays for services before he leaves, and the costs are usually 1/10th - 1/2 what the costof the same procedures in the US would be; medicines are still very expensive here and Mark's medicines can run itno the thousands of dollars a month, depending on what he needs- the pain medicines and nausea meds are some of the more expensive. We found a nausea medicine that is $15 a pill, and mark is hesitant to take it, but it works when nothing else will, so I feel it is worth it, though still expensive.

There are cashiers' desks throughout the hospital and much effort goes into making sure patients pay before leaving. Sometimes a deposit is required before services are given. After service, patients receive a numbered card, and monitors throughout the hospital tell you when the cashier has your charges processed. After paying, you go to the on-site pharmacy where they fill any prescritions the doctor may have ordered. When you have x-rays taken, they are available at the doctor's computer screen within a matter of minutes.