February 28, 2005

February 28, 2005 The first report or update on Mark:
Mark's decision to go to Thailand is turning out to be a good decision. Even though it is private pay, it is turning out to be true that he will get the very best of care, at 1/5th the cost. He made an appointment with an oncologist for the day after he arrived in Thailand. He was at the hospital from 9 am until 8pm. seeing not only the oncologist but a radio-oncologist, an orthopedist and an infectious medicine specialist as he had developed an abscess on his elbow in some mysterious way. He had a battery of scans and tests: bone scans, heart scan with radioactive tag, blood tests, renal tests...and an IV with IV Rocefin. He is to get radiology every day for awhile as an outpatient, beginning right away, to shrink his esophageal cancer. There is the option of some laser cutting also. There is no talk of a magic cure though as some suspicious areas on his spine also.

More metastasis? One of his docs just arrived after 15 yrs at MD Anderson and is familiar with the experimental studies and drugs and treatments, as well as latest non-experimental treatments. He was greeted and treated like a king, escorted everywhere in the hospital which is apparently huge with a mall and restaurants. I have only viewed it from the outside and looked the lobby windows in the past and been impressed by how clean and how modern it is.
Mark's goal is to increase his quality of life and extend it as far as he can. I am less worried about him than I was. He accepts that he does not have long to live and I accept it too..however if he can have time to put his affairs in order, perhaps have a few more adventures while under good medical care, and to say goodbye it will be wonderful. I will be in Thailand March 7 to 21 unless I need to stay longer. If I come home, I will make a return trip perhaps 6 weeks later. Thanks for all your prayers and caring, betty

February 22, 2005

It is 10 days after I received word from Mark that he was diagnosed with cancer. He has been hoping and believing that his health insurance would send him to a hospital in Hawaii or the Philapines for evaluation and some treatment, but he finally came to believe that they were not going to send him as they believe he only had three months to live. But then again, shouldn't he be evaluated by specialists in the field of oncology, of which there are none on Saipan? He has given away all his belongings except for a camera, a computer, and just a few clothes. When I visited him this past fall, he had closets full of clothes and 15 or so plastic crates of belongings and clothes that the hospital had paid to ship to Saipan, a television, an answering machine I had sent and lots of household items he and i had bought and cupboards full of canned goods and housewares : virtually everything he had collected over the years. He gave it all away except for a camera, a computer, and about 5 pair of pants and 5 shirts and bought a ticket for Bangkok.
Mark sends me an e-mail:
Well, I made it here. It was a rough trip, my back hurt, and then my elbow and my ankles got very swollen.. I am headed to the hospital now, but it is a holiday here so I don't know how much I can get done. My friend, the Thai doctor in Saipan, wrote me a note and referral to an oncologist at Bumrungrad Hospital, but in the same note he said that in my case he wouldn't reccomend radiation or chemo, because I might not survive it, or it might make me sicker. He is reccomending traditional Thai medicine, and said his family would help me with it.
It seems every person that I have talked to also knows of some doctor or cure that worked on someone they know. People are almost offended if I don't show the proper awe and gratitude at their sugestions for my care.
Talk to you soon, Love Mark.

February 16, 2005

e-mail to sister Stephanie: I just called mark at 6:45 a.m. my time. Mark was just preparing to go to sleep...I think it is 4 pm..maybe he is working nights...I am not sure if he is or not but he said he is trying to stay on schedule as long as possible to extend some benefits out..
Today looks like the insurance company will authorize him go to Hawii and will pay for the first round of radiation if the doc in Hawaii says he needs it..
I will call MD Anderson today and talk to lots of people but it looks like he needs to get first round in Hawaii and when that will happen is still not settled...maybe he will go tomorrow or weekend or mon....island behavior...Thank you for looking stuff up: a lot of links and sorting thru misc stuff of little value could be overwhelming to mark ..so sift thru it and just send him the gems if you can...kind of like us panning for gold in Japan..lots of panning for tiny gems.
Love you mom

February 15, 2005

E-mail to sister, Stephanie.
"Mark is waiting to see if he is to go to Hawaii...They have decided he is not to see Dr. Pang but Dr. Sterns and they can't get ahold of Dr. Sterns to get an apt for Mark yet..but they are trying to get an apt...then he will go to Hawaii..he thinks he will be there a couple of days, come back to Saipan, pack and head for Thailand. He has his friend John there looking for an apt for him.
He is willing to think about M.D. Anderson if they can do anything for him...I will call tomorrow.
I have encouraged him to talk with the social worker at hospital in Hawaii regarding his Medicaid and SSDI questions and continue to tell him I will provide some money and even sign if need be saying I will pay...eventually. He does not want to be on Saipan any longer than necessary since they can do nothing for him. I told him we would meet him there after Hawaii and he said...come to Thailand."

It's frustrating. You don't expect this to happen, and you can't be prepared for it. When insurance backs out on you, it feels like your choices become severely limited. Add to it that the choices you have keep being taken away, and you have what we have- no control.

February 14, 2005

Stephanie has talked to Mark and she writes in an e-mail:
OK, talked to Mark for a while... he answered and sounded tired- I guess he was asleep, but it was a real good talk. He's gotten news from somewhere that they won't pay for much care because it's "not curative", meaning it's just to keep him comfortable but not to save his life. He agreed that he should do some of it anyway - said he'd be in Hawaii in a day or two, to discuss with doc, then back to Saipan then on to Thailand for treatment b/c he likes the hospitals and people there.

A Thai doc from his hospital said he'd send his family to pick Mark up and care for him and then I guess he also knows someone who does some alternative treatment. I asked about clinical trials and he said he doesn't qualify but to feel free to send out his contact info and he'll talk to anyone. Said he will sell or give away most of his stuff but that he hates it b/c he's gotten it down to stuff he really really likes. I told him that photos are really important to you and me and he understood that and he said that was the plan... he seems to be hanging onto having a plan and that's understandable.

I told him I wanted to see him and to contact me as soon as he lights somewhere that he has a doctor so I can do that. We joked about going to Tahiti for alternative treatment... that was nice. Then (note: morbid thoughts ahead... proceed with caution) he asked would we take his ashes and what would we do with them and so I said "that's up to you- mom and i will do what you want us to do, but come up with something fun, creative" and he says "Okay, I want you to skydive and..." and I said "be careful with this, cuz you know Mom will do it if you ask" and we laughed again.

February 13, 2005

Stephanie wants to send Mark a hand held game and some books. I email her the following news:
"Mark just called and the doc told him to go to Hawaii day after tomorrow and he will go to St. Francis Hosp and see Dr. Pang. He is feeling lost since he does not have the time he thought he would to pack up his things and ease out of Saipan...yet he is not sure he should pack his things as he might be coming back to Saipan...Uncertainty...He is headed for hospital now. I did tell him again that you were not so far from him and you would come help him. I guess we will know more about Thurs after he sees Dr. Pang...I am not sure you can send him a handheld game or books until you know how long he will be at St. Francis Hospital. What a deal! He said he felt lost today...but I know he will be back up as soon as he gets to the hosp. and talks to people there and gets more info. love mom PS thanks for kind words."

February 12, 2005

February 12, 2005 "Bad News."
Mark called a couple of days ago and left a message to call him right away as he had "a bit of bad news." When I reached him, he told me that he had suddenly been diagnosed with cancer of the esophageal gastric juncture with metastasis to the liver and it was so bad that he had been given three months to live. He expected to be flown off the island to Hawaii or the Phillipines for further evaluation and treatment within a few days. I called his sister in Japan and had her contact him. He sent her an e-mail on this date explaining his situation. Here is that e-mail:

Hi Steph, Thanks for trying to call, it means alot to me. Mom has told me all about your place(in Yokosuka, Japan), and that you are happy as a clam. I like it here on Saipan too, but now I think that I will have to move on.
I'm sure Mom told you some of what is going on but I'll recap for you: For the last 4-5 months I have had alot of pain in my stomach. At first I thought it was just indigestion, and took malox ect., but later on I had trouble swallowing food. It would just get stuck right above my stomach, and would hurt alot before I could force it through with water. So the doctors thought it was regurgitation, and put me on regalin (kind of like prilosec), and some stronger antacids, told me to change my diet, and we would check it out if it didn't get any better. I had already changed my diet to mostly noodles and soup, an I stopped having more than 2-3 beers a week almost 2 years ago, so there wasn't much to change. Well, the pain stayed with me, and I developed another pain on my right side that was alot stronger. One night at work it got so bad that I went to the ER. They started me on an IV because I was dehydrated (my gut is not taking up water like it should) and gave me some pain med. The doctor was smart, and could tell that this might not be just regurge or acid problems, and scheduled me for an ultrasound of the abdomen the next day (this last thursday). I thought the ultrasound might show gallstones or something like that, but it showed several places on my liver where the tissue was of a different density than the surrounding liver tissue. This is about the time I started to get a little worried. Then we did a cat scan of the abdomen. After that many of the doctors that I work and play with started dropping by the ER to say hello and if they could help to let them know, another bad sign. then the GI doctor came by and took me over to look at the CT. He showed me where the esopagus started, and how large the passage was. Then as the pictures went deeper, near my stomach it got smaller, and then just was closed. Surrounding the esoupagus was a donut looking bunch of tissue, slightly darker, indicating more tissue of a different density. The end result of the tests were that the doctor told me that I had an esophogeal tumor that had spread to my liver. The next day I underwent an endoscopy, and they took biopsies to find out what kind of cancer I have. I haven't heard yet but generally this kind of thing goes pretty fast. There is not much they can do for me. Possibly shrink the tumors a bit and try to open my stomach a little every now and then so I can eat some solid food, but I think I'll probably kick the bucket in the next year. The doctor gave me all the liquid morphine that I need, and that helps alot. It keeps the pain down so that for right now my life is pretty regular. I am able to go to the beach and see friends and stuff. I am not weak or anything, I actually look really good, since I have lost a few pounds. I'll take some pictures and send them to you. This week the medical board will meet and send me to Hawaii to start some kind of treatment, but it is just to buy a little time, there is no possible cure. I think after Hawaii I will try to go to Bangkok and rent an apartment there. It is cheap and they are not freaked out about death. I think it would be a comfortable place to be, I have friends there, and they have good medical care. I don't want to burden mom with watching me whither away and needing to deal with all of the other things that will come up, so this is my initial plan. As things change or develop I will let you know.
Thank you so much for calling. When I came home and heard your voice I can't begin to tell you how much it meant to me, and how much it cheered me up. I will get mom a phone card, I think I have an extra that can be recharged, and if you will e-mail your phone number, I will call you. I miss you.