September 26, 2005

9/26/05 Mark goes into Surgery tonight USA time...It is morning 9/27 in Bangkok and evening in Austin Texas. This is for a biopsy of the kidney because a suspicious spot seen on CT scan. As soon as I hear the results, I will post them. Mark was down a bit because of this. Friends, relatives, strangers have been blitzing him with letters of encouragement and enclosing five, ten, or twenty dollars or a few euros to help with his latest expenses and keep him opening mail when he won't e-mail. He says his treatment is a full time job with overtime and he can't fit that e-mailing in...and he does not feel up to doing it. He keeps all his letters and cards and has his favorites that he reads over and over like one from Tom Zimmerman, a therapist colleague of mine. Mark told me that Tom said: "My hand is on your back, buddy" and some other things that lifted his spirits and gave him hope. He has other favorites...some posted on his refrigerator like one from a student of his sister Stephanie...and probably one you sent. It does not have to be a purchased card...just draw him a picture or write a note. It does not have to be money. It could be koolaide or a small package of taco seasoning. Postage is 80 cents if you don't exceed the letter weight. E-mail me for the address if you want to send him a postcard from somewhere in the world or a note of encouragement. Hugs to you all. Miss betty the mom

Stephanie's Update- It's now 9pm Japan time on the 27th, 7 pm Bangkok time. I just got off the phone with Mark - he goes in for the biopsy in about 12 hours. He was upbeat on the phone, but he also said he worries about the pain it will involve; Mark tolerates pain fairly well, but he said the eye procedure was excruciating and he knows what to expect from this biopsy, so he's thinking about that.

Markie's always been a slow waker- he just doesn't get up and out of bed in a happy mood - it takes him a while. Tonight was no different - he grumbled and growled and said he couldn't hear the phone. But it only took a few minutes and he was talking away about how the weather is, what friends had called recently, new neighbors he had met upstairs, 400 years' of war between Burma and Thailand, etc. Mark had been on my mind heavily for days and so I told him I had been thinking of him and he seemed happy to hear that. He also told me to be sure to say hi to Jessica. the student who wrote the poem that is on his fridge. Mark's really happy to know Mom's coming for a visit soon - he was obviously happy at the thought of going to the beach (2 hours from Bangkok) and soaking up some sun and solitude.

September 21, 2005

Having cancer or a relative with cancer is like being on a roller coaster ride. Some days there is good news and some days there is bad news.

Today I got a call at 8:00 and it was Sarah asking if I could come work at Dr. David Brown's office this morning. I stopped on the way briefly to have coffee with my wonderful and understanding friend Olga whose father was a pathologist and who lost one brother to cancer and has a twin brother, a psychiatrist who is fighting cancer and other health problems now. Olga and I talked about how cancer is like a roller coaster ride. I had just told her about how upbeat and hopeful Mark was yesterday when I got a call from home telling me Mark had called and his mood was down because his cat scan results were given to him today and he has something odd on one kidney that has to be biopsied. Olga gave me a big hug. Later I listened to the message on the recorder and Mark was concerned this might shorten his "time on earth, " and he said: "It's good you are coming to Bangkok now." I will double my efforts to try to get friends and family and strangers to send him notes of encouragement and I will do my best to encourage him too. He is not ready to give up the fight.

It is odd but off and on all day I have thought not of the trips described in previous blogs but of the MEDICO trips that Mark and I took together and our scuba experiences on the island of Roatan after MEDICO trips. MEDICO stands for MEDICAL EYE DENTAL INTERNATIONAL CARE ORGANIZATION. MEDICO takes volunteers to Honduras and Nicaragua to give care to people in remote and underserved areas. I made 14 or 15 trips with MEDICO and was so fortunate to have Mark on some of the same trips. Mark still wears his MEDICO shirt and heads off in the taxi to chemo wearing it. You will see in the picture of above, he lost a good bit of hair and looked a bit pale but still proud of his MEDICO experience.

One of our more remarkable trips was to the Moskito Coast of Honduras. Our team was flown into the Moskito Coast by the Honduranean Army (arranged by a Rotary International Rotaract group). When we went to board the two planes, Mark and I split up and each went into a different plane. The planes were ancient. One had a large fuel tank in the middle and it was leaking and puddling down the middle of the plane. The other had metal seats down both sides and the exit door said "In case of emergency, use axe" and I didn't see an axe. I yelled at Mark as I boarded the plane: "Spend your inheritence well."

Luck was with us and both planes arrived in the Moskito Coast where our team spent sun up to sun down seeing patients all day long. We could not carry in enough water for a team so we drank river water with chlorine drops in it. Large rats lived in the rafters of the rooms we slept in so no fruit could be left out by the bed or you would awake to the chomping of the fruit by the big rats.

The day we were to leave, we found out our departure was delayed a day because one of the two planes had broken down. We had an unhappy crew. The military base not too many miles from from our clinic put us up and cooked a good supper for us to keep our group happy. The next day our planes came. They landed, but we did not board immediately. The army cooks prepared breakfast for the pilots and served it under the wing of one plane. At the same time, some soldiers unloaded the supplies from the plane: lots of cartoons of eggs and boxes of food and supplies and a coffin of a local woman who had been in difficult labor and flown to the city where she died in labor and was returned via coffin. It was quite a scene, the pilots sitting at a table with table cloth and silver coffee service and formal service by waiters and the cartoons of eggs piled high near them along with a coffin. A station wagon came and loaded the coffin while the pilots ate. The coffin stuck out the back door of the station wagon and when the wagon started to drive away, the coffin fell out.

Finally our team loaded up and took off, our crew not too happy going home a day late. Unlike the rest of our group, Mark and I were headed to Roatan to scuba dive. Mark was diving with one dive master and I was taking a scuba course with a different scuba master. I arrived a day late and had to catch up...immediately demonstrating all skills the rest of the class had taken. The class was three men and myself. The men were all young, muscular, and over six feet tall. On the third day of the course, I was exhausted after 12 days of hot sun working sun up to sun down in the Moskito Coast and two days of heavy duty scuba with jocks. I awoke late and had no breakfast. This day for some reason Mark went with us out on the scuba dive along with his dive master not our dive master (who may have been under the weather and the other students). The water was extremely choppy. I was the first to go in going over backwards off the boat. I had to hang onto a buoy line to keep from being washed away waiting for the others. We went down and were moving along pretty good when all of a sudden I lost all my energy: a result of exhaustion catching up with me and no breakfast...I could not get myself off the bottom with any BC adjustment.

I had not panicked yet but was close to it as I was wondering what I would do as the others had left me behind. While Mark was not buddied to me, he missed me and signaled to the dive master who deputized Mark to stay with the students while the dive master came back for me...When I hit the top I was in bad shape, coughing struggling to breathe, gasping for air and this continued for two or three hours after getting back to the dive shack. It was our last dive of the course. I took the test that night, passed it and passed the course, but the most important thing was that I was still alive. I credit Mark with saving my life. I owe him and it is pay back time.

Sometime I will tell you about our MEDICO trip to the Nicaraguan Moskito Coast where we were accompanied by guards with big guns and slept in a tree house built especially for our team and woke up in the middle of the night in a sideways rain. OOPs I told you a lot of it, but there is more....

September 20, 2005

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. "

September 11, 2005

2004 picture of Mark and Mom (me) on Koh Nangyuan off the coast of Thailand; this island is like three little islands joined together. We snorkled down below in the clear waters and saw a lot of beautiful fish. We had a lovely lunch outdoors at the hotel on the island. This is Mark in Spring 2004 before he got a diagnosis of Cancer and before chemotherapy. This is not the best picture of me, so just look at Mark.
Hallalujah! Good news! Mark's last eye surgery has enabled him to see clearly and to read again. Mark had at least 4 eye surgeries. He was ready to quit after the first surgery, but somehow hung in there. Mark is still not cleared to fly anywhere due to the condition of his eye, but he can see and read. I have a reservation to fly to Bangkok on Oct. 3rd . Mark asked me why I was coming that he did not need me to come and that he is managing ok. I told him I was coming anyway and then he said: Oh great. The timing is perfect and he got real excited about my visit. He so wants to be independent and to not be a worry to me.
Michael St. John, whose blog Stephanie came across one day, is sending Mark some audio books. Isn't that great?I think that the letters, notes, prayers, and gifts from the heart from all of you are giving Mark the courage to fight his cancer. I talked to Mark on the phone today and he tells me that Dr. Theera says that he (mark) is his best patient and that he is responding best to the treatment (chemotherapy). Mark cautioned me not to expect too much from him when I come to visit as to quote him: I do not have that much energy and I mostly just go to the hospital, sometimes twice a day in a taxi" and "My cognitive level of functioning is not all that great."I had to laugh at that statement. On Mark's worst day he is sharper than some of the rest of us. Mark tells me that some of the hair that fell out from chemo has grown back in and he has combed it over his forehead so he looks like one of the Beetles in the early days of that group.He likes detective stories and he has bought DVDs of one season of CSI and is watching CSI for entertainment. He finds the forensics interesting. This is one of my favorite tv shows too. Mark is enjoying life in spite of all the physical problems he has had: old BPI injury, Cancer, broken arm, eye surgeries, and maybe more. His adventures continue. If you need Mark's address contact me

September 08, 2005

September 08, 2005
Mark is facing one more laser surgery on his eye. The eye still has a fluid leak and he is not cleared by the eye doctor to fly, so no visit to Texas just yet. His cancer center doctor is pleased with Mark's response to chemotherapy and the chemotherapy continues. Mark has caught a cold. His broken arm is healing and hurts him less. He does not talk about his brachial plexus pain anymore. I figure that he is too busy with all his other problems and efforts to resolve them that he just ignores the BP injury problems.
I am planning to go visit Mark in Bangkok in 3 or 4 weeks to check on his health state and the state of his bank account. Thinking of banks, I just had a strange mental synapse to a memory of when Mark was a baby and came home from the hospital. His first trip outside the home was to the bank with mom. It was cheaper in those days to have a baby. I think my hospital and doctor bill was about 150 dollars total. But then again I had excellent insurance. When Mark was born I was a nurse working on the obstetrical unit of Memorial Hospital in Springfield, Illinois and the doctor (Dr. Zelle) may have given me a discount since I often helped him deliver babies in the labor rooms or took care of his moms and/or their babies after delivery. If any of you reading this were born in Memorial Hospital Springfield Illinois between 1959 and 1965, I may have helped deliver you or have changed your diaper.
Back to the visit to Mark. He made me promise to go lightly on him when I come back to Bangkok or I couldn't come. A cold, chemo, cancer, a broken arm, an old brachial plexus problem, and financial worries seem to have worn him down so he does not want to be questioned, pushed, prodded, or told when or what to do. I think I kind of know how he feels. I think it is like when I am really tired and have given about all I can and just want to be "babied."