third post today - look at others first

Well I was right that Dave did not look good but wrong on the reason.  Turns out he was dehydrated.  This is not good because it stresses his kidney.   He had been drinking ensure at meals but not water and only using his sipper between times.  They ended up giving him a litre of fluid.  Now we need to remember that dizziness and fuzzy thinking are not because of the pain meds but lack of fluid.  Tomorrow morning he goes in for more fluid and then another blood test to determine what happens next.

Dave just left to go for his second chemo appointment.  The first thing that will be done is a blood test. With an on-site lab the results will be available in about an hour.  Results will determine if or how much chemo he will receive.  With his fatigue and pale face I am concerned that his blood count is to low.  If he is home in about a hour that will answer the question for me.

A PERFECT WEEKEND

Last weekend was one of the serendipity times that we all treasure.  Kari had to fly to Fresno, California on Sunday afternoon.  It is a direct flight from Portland, but from Eugene a plane change is necessary.  Kari and Garrett decided that made it a good time to see us.  When those plans were made we did not know it would-be the same weekend Todd and family would-be returning from a two week vacation.  With a warm and windless evening Dave was able to be outside and not get cold.  I had the fun of planning the food while others did the work.  (No, I am not spoiled, but I have learned to enjoy having a personal assistant).

Caregiver Kelseyann took me to Farmers Market where I pointed with my toes, and she carried fresh clams, Blackberries, raspberries, peaches, plums, yellow and red tomatoes and fresh flowers.  Most of that was eaten that night.  I think even Walker had as many steamed clams as he wanted.

When Sam and Miles got restless after eating, they set up the croquet set.  They remembered the two ends and were trying to remember the rest when Kari joined them.  Both she and Garrett encouraged unusual arrangements.  It sure is nice to have an aunt and uncle that think outside the box.  Gradually others joined the game while the rest relaxed and talked.  It was a special and mellow evening for everyone, even Dave stayed up until eight. 

Sunday morning was relaxed with an opportunity for more talk, and we planned around Kari's next trips to Fresno.  Then Sunday evening we enjoyed dinner with Todd, Cindy, Walker, Sam, and Miles.  This was a good time to hear more about their vacation where they spent time with all the cousins, time with their grandparents and time with just the family.  Cindy summed up the two weeks - they spent 16 days outside.  Is there anything better with three boys?

Beginning

Wednesday was Dave’s first chemotherapy treatment.  I know he was apprehensive about it and waiting until one o’clock didn't help.  Wait, didn't I say that we were going to regroup on Tuesday with the oncologist.  We did.  After seeing the infectious disease doctor, Dave had told me that he had decided to try chemotherapy.  Being the patient person that I am (NOT), after talking about his options, Dr. Crocenzi asked Dave when he wanted to start.  I said NOW.  That must here been the answer Crocenzi wanted, because he took a quick look at the computer and said he would let the schedulers know. 

Poor Dave sat there with a “what just happened” look on his face.  We had many discussions on what life extending measures would be acceptable and knew we disagreed.  When he told me last week he would try chemo, I was not going to let the moment pass.  Okay, I will get back on topic. 

Dave was to be there at 1:00 pm.  Blood had been drawn on Tuesday so he did not have to wait on that.  Starting with an anti-nausea drug that took about 20 minutes, he was on his way.  Then the Gemzar started, and it took about thirty minutes.  He was also given some prescriptions and information sheets.  Blood tests revealed his was low in potassium and the platelet count was still low.  When Tony picked Dave up (thanks again), they went to pick up the prescriptions, they also bought bananas.

Wednesday evening was not very good.  He had pain in his back that was still there after taking the 12 hour pill and the other for break through pain.  Finally after taking some Tylenol and oxycodone,  he finally went to sleep .  I prefer to think that cuddles with me helped him sleep.  Thursday, after a good breakfast, he seemed like he got stronger as the day went on..  He was able to go to the library for more books along with other regular activities.  Now we will see how the rest of the week goes.  He will have the next treatment on Wednesday, and another the following Wednesday.  Then week 4 is a break and reassessment time.  So send all your good vibes, thoughts and prayers that he is able to tolerate the treatments and they help. 

 

WE ARE FORTUNATE

You may wonder why I think we are fortunate.  We are surrounded by wonderful people.  My posts have been all about us, but I have not taken the time to acknowledge all the things people have done for us.  First I want to thank all of you for keeping up with this blog.  There is no other way I could share with everyone - except with mass mailing like we did on the boat.  Secondly, thanks to all those who have sent email and cards reminding us that there are so many people thinking and praying for us.  It is fun to hear what is happening in your life as well as feeling the support.  I can't reply to many of your emails, but that does not mean we don't enjoy them. 

Just as wonderful are those that do things for us.  These include two wonderful men who mow the lawn for us.  Thanks Tom and Roger.  Just as wonderful are the many that bring dinner one day a week.  Many have been doing it for years.  You know who you are so give yourself a big hug.  Another special person has been the extra set of ears at the many doctor appointments while Todd is on vacation with his family.  Tony you are great. 

We have wonderful neighbors that do everything from taking out the trash cans to walking Quincy.  In fact there are people who don't know our name but know Quincy that check on us.  Many people send cards and notes to remind us they are thinking about us.  There is also the mystery person that sends beautiful post cards with a quote in the message section.  My guess is Liz, but don't want to say anything or they might stop.

Sunday Dave was the recipient of a very special gift of caring.  A hand spun, hand woven, wool prayer shawl.  It is so soft and light.  A perfect choice for someone who is always cold.  This morning Dave had it draped over his shoulders while working at the computer.  It is wonderful Nat! I appreciate it too because I am always hot. 

We are also fortunate to have visits from family and out of the area friends.  Your phone calls are special too.  Because I require so much equipment to go somewhere over night, we thank all of you for coming to us.  I am sure as soon as I post this, I will think of something else that we are fortunate to have.  Opps.  How could I forget the most wonderful kids in the world?  Every step of this ongoing journey, they have been with us!

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.