August 24, 2006
Hospice Austin. Mr.Mark is hopeful but he tries to be prepared. He had me call Hospice Austin to get information about care and we learned thatthrough this non-profit organization,Mark could receive care at no cost with a statement from an Austin Doctor that he has six months or less to live and is not on any curative path. He could be on chemo, not for cure, but for reducing tumors to decrease pain or distention, and/or make him more comfortable. While not ready for end of life care because he still has that fighting spirit and a little hope left, he has the information in case he reaches that point.
Story of a Hospice Client
When I used to take nursing students to a nursing home/convalescent center,I would assign one of them to Johnny (not his real name)who was on hospice and expected to die in six months or less. He'd be moaning and refusing to leave his bed. The nurses would tell us to be careful as he was fragile and really we probably ought to get a different patient. Within one or two days of being cared for by a pretty young lady, Johnny would get out of bed and start going to the dining hall and would try to teach the student some dance step or amuse her with a story. We would end our clinicals at the nursing home then I would return in six months or a year with a new group of student nurses and Johnny would still be there at deaths door. A pretty student nurse would once more perk Johnny up. Mark reminds me of Johnny. He may have cancer, but put a pretty nurse next to him or some fun thing to do and he is up and going. He is limiting his outings to one a day or two max, separated by rest, to conserve his strength, but he is still going strong and looks the picture of health.
August 21, 2006
Mr. Mark looks so good, we sometimes forget he has cancer and is sick. Mark needs to rest a lot. When he overexerts himself, he is in a good bit of pain. Today he was up all day and over did it and he is fighting pain tonight. Today, Mark and James set up City Navigator North America on the GPS and they are delighted to have the GPS identify all the restaurants and businesses in our area and exactly how to get to these places and to look at maps of Reno and Tahoe and California (We are all going to San Francisco on Sept 4 and we will drive to Reno and Tahoe. It could sound crazy to you that Mark is going on a vacation as sick as he is, but when your days are shortened by cancer, you don't want to spend all of that short time in waiting rooms and treatment. You try to do some things that are fun and special.
Mark and James went to Amy's Ice Cream and did a couple of easy Geocache treasure hunts with the GPS. Mark read the Austin Chronicle from cover to cover and talked about all the movies he would like to see, the live music happenings he would like to hear and all the restaurants he would like to eat in...in the end all he was up to was going over to Rudy's Bar-B-Que and getting take out brisket so tender we did not need a knife. We are trying to get Mark out to one or two Austin places each day and to see a few people while he is here...but we must remember his need to take it a little easier than today.
August 15, 2006
Another Trip to the VA in Houston
Left at 9 am headed to Houston for a 2 pm appointment at the VA with a primary care provider who takes the health history; a requirement before you get an appointment with an oncologist. The physician's assistant spent 10 minutes with Mark and gave him a Sept. 1st appointment. We drove back to Austin arriving home at 6 pm having spent minutes in Houston. Wouldn't it have been great if Mark could have seen the PA on Monday or Tuesday when we were at the VA all day each day; but no amount of pleading could make this happen. All hoops must be jumped when the VA staff says to jump. Mark has taken this in stride with no complaints as he wants to see if the VA is a possibility for treatment, so he could come home. It's a challenge not having insurance.
PS August 28 The VA may not be as bad as the private sector. A friend of mine with insurance is trying to get her husband, who has some very serious symptoms, in to see a specialist in Austin Texas and it takes a month or more to get an appointment.
August 15 Mr.Mark's two days in waiting rooms at the Veteran's Medical Center in Houston
We drove to Houston on Sunday and were at the VA by 7:30 a.m. Monday. Two people were ahead of Mark to register for services and "a card." After an hour it was Mark's turn to be waited on. Another two hours in triage before he was called for his vital signs, after another two hours the standing BP nurse took his standing BP and after four more hours Mark was given an appointment to see a primary doctor on Thursday. All around us in the waiting rooms, veterans were grumbling about the long waits. An active duty man was there in triage to get a TB skin test. He had to wait the four hours and get vital signs after two and standing BP after two more while all the time telling staff he just wanted a TB skin test. I could have given him one in two minutes time, but no one escapes jumping the hoops or doing all the wickets. One lady said she was told by a staff person to stop grumbling about the wait as her husband was getting free care. She claims she told the staff that her husband paid for the care with two tours in Viet Nam. I smiled at people and talked to them. One man in a wheelchair, who introduced himself as Nathan, kissed my hand four times for stopping to talk to him and said he and I were family now. Tuesday, Mark went back and managed to talk people into letting him see a doc who was very nice, but he still has to come back on Thursday to see his assigned primary care provider for the first time and to get an appointment to see an oncologist. Mark has a personal letter of referral, from his doctor in Bangkok who used to work at the VA in Houston and at MD Anderson. If Mark is lucky he will be able to see an oncologist before he is due to go back to Bangkok. Highlights of our trip included finding an authentic Mexican restaurant close to our motel and open 24 hours a day, that has great crispy tacos and seeing the Cubs play the Astros in an airconditioned stadium.
Mr. Mark arrived in Austin this afternoon. It took 24 hours of travel to get home. He was tired, hurting, and ready to take a rest. but he stayed up long enough to eat a Schlotsky's original sandwich. Mark is making a list of places he wants to eat at in Austin. He says he has not been eating out in Bangkok due to watching his money and his energies.
Mark is very concerned that he has a tumor on his chest near or on the sternum which is palpable.
We are headed Sunday for Houston to check in at the Veterans Administration Hospital on Monday to see if the VA can do anything for him.