Interesting and frustrating

Today was the film day for my BCI adventure.  I thought that media would be here today but it was just the PR person getting footage to make a “don't you want find out more video”.  Good thing it was not more. 

From the very beginning the OHSU computer was not happy.  Everything was set up, I had the cap on, and Betts started putting the conducting gel in each electrode.  The computer screen shows a chart with a small box labeled for each electrode.  Usually as the gel is put in, the boxes change from blue to green with occasional flashes of red or yellow, as Betts might touch one of the wires.  Everything started out okay, and then the boxes started going back to blue.  After checking the connections and the ground, they were able to improve the connections which were still not as good as usual. 

The next screen is supposed to show brain waves from each electrode.  It is not unusual for one or two sites needing some adjusting.  This time it was all flat lines.  I happened to know I was not brain dead, so something had to be wrong with a connector.  Once again several things were tried, including removing my chair mounted computer.  I don't know what finally worked, but I now had brain waves.  This time there was excess activity. 

It is interesting now to be able to recognize what the researchers are looking for.  I now know which 4 lines react when I blink.  It is a totally different area from the speaking area.  So far filming had included putting on the cap, and a picture of the screen with the brain waves while Betts explained what it showed.  Finally we went to the calibration section knowing we did not have the best connections.  Either I was out of practice or the connections were less than optimal.  The best I did was 80. 

I must admit my pride was a little wounded.  Although the calibration was low, we went ahead to show the part where I spelled a given word in a sentence.  By staying at a low difficulty level where the computer also uses letter prediction, I was able to look good. 

The PR man was interested in seeing the free spelling part.  I said sure.  Now I have a confession to make.  Sorry Betts, but I think you knew.  I faked part of that by changing what I wanted to say according to the letter that appeared.  It gave him some good pictures, and he could see the process.  Besides he was getting impatient and my head in the plastic cap was getting hot.  With the low calibration score I don't think I would be very successful anyway. 

After he left we then talked about some of the problems.  I do know it was easier to focus with other things going on than in a quiet space.  Also I wondered if the hot weather - our second 100 degree day with no air conditioning - made a difference in the gel.  Then Dave reminded me that my head would be the same temperature.  They had already unplugged the computer so it was running on battery, unplugged and plugged in the charger for my computer and tested all connections.  Still we had no improvement in the connection.  The only thing left was the computer felt neglected.  Betts had been gone a week for a conference and worked on other things.  If you sat around for a month with no attention, wouldn't you feel bad? Now it will get some attention.

On it goes

Thursday morning and Dave is off playing Dracula, opps, I mean getting a blood transfusion.  All those years he donated are coming back.  It is much faster to be on the donation side rather than on the receiving end.  Each unit of blood takes about 2 hours, and he is getting two.  Would be much easier to get Dracula teeth and cut out the middle men. 

Our visit with the infectious disease doctor, Dr. Leggett, yesterday was very educational.  He would be a great teacher.  He had talked with the radiologist and showed us the MRI on the computer.  It was fascinating to see as he moved the image up and down showing us the areas of concern.  Looking at the size of the cysts in the liver, he felt Dave would have a much higher fevers if they were pockets of infection.  Unfortunately his feeling was that they were cancer.  Phooey, I had hoped it was something that could be fixed.  Dr. Leggett was planning on talking to Dr. Crocenzi, the oncologist, that day.  Now we regroup and talk with him on Tuesday. 

What a difference sleep makes

Finally Dave slept all night! There were several changes that led to this.  I don't know what was more important, the time release pain medicine or control of the night sweats.  Our caregivers probably would say control of night sweats because now there is not a pile of 3 to 4 wet t-shirts and pajamas along with the towel he had put on top of wet sheets.  Both are important to Dave. 

Meeting with our primary care doctor was the opportunity to review and refine the medication he was taking and possibly eliminate, change dosage, or add.  While he was in the hospital, he had been taken cold turkey off the depression and OCD meds, so he was glad to be able to restart one of them on a low dose. His disposition has improved significantly, so life for the rest of us is better too.  Everything is based on if the medication is processed by the kidneys, or if it might react with the time release pain medicine. 

Now that his liver function is also close to normal he can begin to look ahead.  The MRI last week showed that the tumor had not grown, nor had the section on the liver changed.  However possible cysts were discovered in the liver.  One of the possible reasons for the cysts is there are pockets of infection left-over from the infection that put him in the hospital.  Because chemotherapy cannot be safely started if an infection still exists, we now go to the infectious disease doctor on Wednesday.  

One more doctor to meet.  It seems like there is always one more piece of information we need.  Thinking about one more piece of information, the cancer doctor did not like the continued low red blood counts Dave’s blood tests have been showing, so a transfusion is needed.  Another blood sample is needed to match everything so that will be done on Wednesday.  Thursday he gets to spend 3 - 4 hours watching the blood dripping down.  More likely he will take his laptop and watch a movie.

crazy times

It was important to me to share the last post because our life is not all medical issues, even if it seems like it sometimes.  I am sitting on our very clean deck (Thanks Tony), enjoying the breeze, wind chime and the yard.  I had asked the landscaper for something interesting to see year round, and she did a great job giving me exactly that.  I really enjoy just being here. 

We recently were comparing pictures of the house 5 years ago with what it is now.  Wow, are the plants happy!  This past winter and spring were very good, no extreme temperatures and plenty of rain.  Probably should not say that because the rest of the country was not that fortunate.  A friend who loves to garden took pictures of her garden to a reunion where most of the people were experiencing water rationing.  Opps. 

There is a wonderful reason we were looking at the pictures.  Kari was here when Dave was in the hospital.  As she was about to go to the hospital on Saturday she noticed 2 women in front looking at the house.  When she asked if she could help them, it turned out one had grown up in our house and the other next door.  After a brief tour she asked if we would like some pictures of the house when it was built in 1951.  Additionally she had a picture of the blue spruce when it was planted.  She was 4, and the tree was the same size as her.  It has been fun to see the pictures and also look again at the changes in the yard since it was first planted five years ago.

Fun time

Last Wednesday all the Greene men had an adventure.  We have often seen jet boats on the Willamette River, and Dave has said he would like to go on one.  Todd made the arrangements and off they went.  That afternoon was the first of our beautiful blue sky summer days.  These boats are completely flat bottom without a keel or rudder so they slide on the water.  One of the fun maneuvers (and an advertisement?) is turning the boat in a complete circle that makes a wall of water appearing like it will engulf the boat.  Besides being a fun ride, the trip also is a tour of the river front which you cannot get any other way. 

Todd had recently participated in a relay river swim that went under all the bridges, so it was fun for the boys to go under the same bridges.  As expected, Dave enjoyed going by one of the boat yards where an old destroyer was being retrofitted.  He could have spent an hour looking around.  How many of you went to boat yards and marinas when in Europe?  To cap off the day they went to a drive-in restaurant for dinner.  It is always interesting to hear the different perspective when with the boys, or any multi-generation outing.

improvement

Thursday Dave and his entourage saw the cancer doctor.  Blood tests showed that his kidney function was in the normal range! Liver function improved too, but still not where it needed to be.  Anemia is an ongoing concern.  If his anemia does not improve on its own, or he starts losing energy, he might have to have another blood transfusion like he got in the hospital.  Not something he is looking forward to.  It is interesting that the drugs used to treat anemia are not a good match with cancer patients.  So blood transfusions are used instead.  He is still at the watching stage. 



Tomorrow he will have a chest X-ray to look at his lungs and a MRI to check his abdomen.  They can use a contrast chemical with the MRI to get a better picture of the tumor.  The normal contrast chemical used during a CAT SCAN, which have been run before, can cause insult to the kidneys and make matters even worse.  We feel like more knowledge helps so decided to go ahead with the MRI.  The engineer needs data to make decisions, good or bad. 

MORE BCI

As I said in a previous post I had completed all of the stages of the Brain Computer Interface trial.  Now more fun was coming.  Betts had shared my blog with others in the department.  The lead person in the department wanted to get publicly out.  Apparently I was the first one finished so I was asked if I would be interested in working with someone from PR.  Silly question, of course I was.  Then when I found out his name is Todd that was even better.  How could someone with that name be less than wonderful.          So last Friday Betts brought him to the house.  He is definitely taller than our Todd but I won't hold that against him.  His plan is to notify his media contacts and have them come out for a live demonstration. Sure hope I am able to do a good job after more than a month layoff.   We set a time for August 17.  Now we just have to wait to see who shows up.