November 26, 2005

Mark spent a whirlwind two weeks in Austin, Texas before heading back on Tuesday to Thailand and Bumrungrad Hospital to continue his chemotherapy there. He almost delayed his leaving to stay over Thanksgiving, but in the end did not want to be too long off chemotherapy. He gained about twelve pounds and learned more about how to control his pain (Thanks to Dr. Brown and Eloise, a hospice nurse in our Sunday School Class), and from the internet he learned about foods high in iron and what to eat to elevate his low hemoglobin and hematocrit. It was interesting to learn that clams are very high in iron: much higher than spinach, grits, and steak and other things I am used to thinking are the best sources of iron. We made a huge pot of Manhattan clam chowder, ate steak, and cooked lots of shrimp (fairly high in iron) and this may have accounted for a rise in his hemoglobin and hematocrit on his last Complete Blood Count (CBC). Mark relearned that he still has some friends and other folks in Austin who care about him. He could count these things among his blessings along with the fact that he is still alive after being told in Feb. this year that he would be dead in three months.
On Being Positive
Mark, his sister, and I continue to strive to be as positive as we can be. That does not mean that we don't have times we worry about running out of money or running out of time and Mark dying way too young. He reads the obituaries and checks to see if anyone younger than he has died. One man had died at 47 and Mark said: "Maybe I can make it to 47. " I held him four mornings in a row while he cried and I cried too. It was good to cry, but then we had to move on and do what we could to deal with the problems and enjoy the day.
Return to Bangkok with gifts
Yes, he is back in Bangkok with two suitcases full of brisket, eight pounds of canned hominy for his friend John, hot sauces, a small vacuum swiffer for Jin and other gifts for friends there. He came with a very small carry on and a small check bag with only clothes. I went to the attic and got two big suitcases for him to take things back in. Alex, a good friend of Mark's from Saipan arrived in Bangkok shortly after Mark arrived and is visiting with him now. This brightens his day and is another blessing to count. We are very blessed.

November 18, 2005

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

November 12, 2005

Latest Adventure - Mark flies from Bangkok to Austin for "Last trip home."

When I last posted I (The Mom) was in Bangkok with Mark. I left Bangkok at 6 am on the 27th of Oct to come back to Austin, Texas. Mark had been saying that he was too sick to make the trip to Austin, but on the day before I left, he suddenly insisted that I get him a ticket to Austin after his next chemotherapy in two weeks. He had not walked more than a couple of blocks at any time, but he insisted on walking 12 blocks to the travel agent to pick up the ticket. He had to climb a lot of stairs to an overpass, rest at the top, then cross and go down stairs on the other side. I was urging him to take a taxi but he decided to build up his strength for upcoming trip to Austin. He also walked the 12 blocks back to the condo. I was certainly amazed. He passed the next two weeks getting ready to come home, getting copies of his records and images and packing enough medicine, etc. He went to get chemo and spiked a temp of 103 during chemo. The infection control doc hospitalized him and wanted to keep him for observation for days...After a couple of days of no fever, I called the doc in Bangkok and asked him to turn Mark loose since he was only getting his temp checked every three hours and it was normal...but in the end he had to sign out AMA.

Mark arrived in Austin on the 8th of Nov. after a long long trip of about 22 hours. He looked great but reminded me he is sick on the inside. He had 3 plus pitting edema of his legs and feet. His eyesight is now fine after surgeries and procedures by specialist in Bangkok so he immediately borrowed my car after not having driven for 10 months. He still has a current drivers license from the Northern Marianas Islands. He immediately started visiting friends he used to work with at the local hospitals and elsewhere. He has gotten together with Bruce and Frank and Steve. He has talked on the phone or gotten calls from Randy and Dave and Paul and others.

He is only home two weeks unless he extends his stay so he has had a terrible sense of urgency about getting things done and people seen. Some of the guys facilitated him getting to see a pain specialist here. My workplace (Dr. Brown's CCRI) got his CBC done.

He has an appointment next wednesday to be evaluated for cyberknife. He realizes his cancer may be too advanced for cyberknife to help. It is not a cure for liver cancer but could give him some more time and less pain if he is a candidate. Cyberknife is more expensive than the plastic surgery I was thinking of getting to make me look better on the outside....I could have my whole body redone for what we will have to pay out of pocket for cyberknife...but guess what they say is true...It is what is on the inside that counts. Mark's insides are more important than my outsides.

Medicare does pay for cyberknife, but ironically Mark has to wait two years after being disabled with cancer to get Medicare. If he had kidney dialysis or Lou Gherig's Disease the two year wait would be waived...says a lot for the renal dialysis and Lou Gherig's Disease lobbies..but it somehow feels like discrimination in health care coverage by the government. I am writing a letter to Lance Armstrong asking him to work on this and put a word in for cancer patients when he sees Pres. Bush later this month. When I taught nursing one of my male students took a week off from school to help take care of Lance Armstrong early on in his treatment for cancer. Most students could not do this and still pass but this guy was very bright and motivated so it worked out ok.

I will keep you posted about Mark's adventures in the states before he returns to Bangkok. He thinks about moving back to Austin...but access to health care is a challenge and it is very costly compared to Thailand. Public transportation on a scale from very poor to very great, finds Austin at the very poor end and Bangkok Thailand at the very great end. Many people in Bangkok don't have a car even if they can afford one. You can get where you are going easier and quicker and cheaper by the sky train and/or subway or in nonpeak hours by taxi. Sometimes when I am on one of Austin's major roadways (like MoPac) and it is like a parking lot with traffic moving at 5 miles an hour or slower, I long for the skytrain or subway of Bangkok. Austin will never have great public transportation as our decision makers prefer to have tollroads which are the answer for the affluent and people who make money on toll roads rather than the answer for the homeless, the poor, the sick, and those who don't drive or can't drive.
Tune in for the continuing adventures of Mark Richardson and his mom's soap box discourses.