I DID IT!

Monday’s BCI session was a great success.  I decided to work with 50 letters rather than 75 to help me keep focused.  The first time through I was able to do 81%.  That means recognizing the target letter out of a stream of other letters 81% of the time.  It was the same as I did last time so I was a little disappointed.  Betts, always the cheerleader, said that was good because it was where I finished last time.  What she didn't say was that was the same level I began with last time.

Keeping in mind that I had written in last night’s entry the phrase Focus Focus Focus, I started the next set of 50.  Somehow I finally was able to quiet my brain when the other letters were showing.  This time my score was 93%.  Wow! What a jump.  Now I was ready to conquer the 5 skill levels spelling words.  Each skill level had 3 sentences with a word to spell in each sentence.  Last time level 1 was easy, but I had some trouble with 2.  Level 3 went OK but Level 4 was bad, and I timed out before finishing. 

Monday was a whole different story, I whizzed through level 2.  Level 3 was almost as quick.  During level 4 I had an incorrect letter so I had to do a backspace and then replace the letter.  Trying to focus on the backspace was my real downfall before.  This time I was ready with a word to use, and I got it right away and went on to do the rest.  My stubborn streak took over on level 5 even though I knew I was getting tired.  Told myself to Focus Focus Focus.  Had some trouble and had to use backspace a few times, but I finished before it timed out! It was so awesome to really be able to direct my thoughts and spell a word. 

 Another fun part was having Walker watch the process.  At 10 he still keeps asking why, like a 2 year old.  But now he also asks how and what.  The difference for us is we often have to say we don't know.  It was also the first time for Yuki to see the process, since the other times it had been caregiver Cindy’s day.  When Betts was ready to put the cap they both jumped up to see better.  Walker declined the opportunity to try on the cap.  He watched the entire process and tried the letter selection process.  Even though I am unable to do some of the things with the boys, I can still provide entertainment and experiences they will not get anywhere else.

watching my brain at work

Tomorrow is session 4 of the BCI  (questions?  see 5/7, 5/29 & 6/15)  and I am determined to show the computer that it is under my control.  Focus, focus focus.   An interesting  difference  will the involvement of the nurologist that is the lead investigator on the project.  Once again technology makes this all possible.  He will be watching my brain at his office thanks to the Internet.  Wait until he finds out what a short attention span I have.  Some say my stubbornness more than makes up for it.  Who me, stubborn?  I am just working to help others.

explain this

Yesterday was Grandson Sam's 8th birthday.  It rained off and on all day, not sprinkles but rain.  It is summer, right?  Grandsons Walker and Miles both have December birthdays.  Did it rain on their birthday?  No.  Explain this to me.   It turned out the rain did stop at the right time so everyone was happy. 

As they always do, Todd and Cindy made a great cake.  This was a volcano with flowing lava.  How do you make lava?  After checking on the Internet, you combine marshmallow cream and red food coloring and other stuff I can't remember to make lava, then add dry ice to make it smoke and flow.  I am not sure who has the most fun desiging the requested cake.  They always do a family birthday dinner the night of the "real" birthday.  This year Sam had his party on his birthday too.

Happy Day

As I said in the previous blog, Sunday was not only father’s day, but also our 45th wedding anniversary.  I might have mentioned once or twice that we have the most wonderful grandchildren.  When each one came in the house for breakfast they said Happy Anniversary with a hug for me, and the same to Dave with the additional Happy Father’s Day greeting. 

 They were so excited about the gift they thought of and helped purchase, they could hardly wait.  First Miles wanted to read the anniversary card from Dave to me.  He carefully showed me the front and the inside and was able to get all the words.  They could wait no longer.  Poppop HAD to open his gift.  I know they do not always get along or follow directions, but when I see the excitement and pride about giving to someone else my heart almost bursts.  They now let people open their own gifts but were almost jumping with excitement.  Walker wanted Poppop to know it was his idea and Sam had a part.  Finally he got it unwrapped and could see that it was a heated massage chair liner.  They all helped put it on the chair and couldn't wait for him to try it.  Poppop sat in the chair and tried the various control options.  After a few minutes they discovered it was on upside down.  Push for a foot massage and the head vibrated.  :-) Oh well.  When Dave asked Walker if he wanted to try it, Walker did and said with surprise, “You are right”. 

What did he think?  Then I remembered both of the grandfathers were known for telling tales with a straight face.  Meanwhile Sam became my personal mail carrier.  I had cards waiting in a drawer and told him there was one for his daddy and 2 for Poppop.  Finding envelopes unnecessary, he handed them out after breakfast to the appropriate people.  We could not think of a better way to start our day.

something is happening

Thursday Dave had the second round of vaccinations.  Big difference.  This time around the vaccine didn't stay in a hard knot and started turning red before he was even home.  I think (hope) it was his body saying I know you and I don't like you so I will fight.  He knows his body is doing something because of the fever and exhaustion.  Thursday he managed to go to the library.  Friday he took Quincy over to see the catapult Walker built.  That took all his energy; by the time he got home he was pale.  So today is a sleep day.  Hopefully he will have some energy tomorrow. 



I know the boys have picked out something special for Fathers Day, and he will want to be able to appreciate it.  Sunday is also our 45th anniversary.  Makes for better or worse really mean something.  We didn't plan on the worse to come to both of us at the same time.  Thinking about that reminds me that the best usually came to both of us at the same time so .......

Love hate relationship

Bet that title got your attention.  I am talking about the BCI session last Friday.  (See May 7th for details and pictures.)  I was rather frustrated with the computer, but cannot get mad because it is just doing what I am thinking it should.  On the calibration section of 75 letters in 9 minutes, I still could not get above 81%.  Stupid computer. 



However, I did get the opportunity to spell out words in a sentence.  The first level of 3 sentences was a snap.  Then I must have relaxed because some problems developed.  Once I got the wrong letter the word anticipation program took over, and I was unable to convince the computer to accept backspace.  Finally I did do it a few times before level 2 timed out.  Went on to level 3 and got most of the words.  The challenge it presented was good, maybe it will get me to the next level.  It is very frustrating when I am not doing the correct letters. 



Now what?  I have to get a different way of thinking about the back space.  At least with a word to spell there is immediate feedback.  On the calibration there is no way to see if it is one letter I always missed, or if there was a pattern in the misses.  With feedback maybe the way I think of the letters could be changed.  Somehow I have to improve.  I will show that computer I can do it, regardless of what it thinks.

second time around

Today Dave had his second chemo treatment and once again he wanted to go by himself.  Before they do anything they do a blood draw and he has to wait for the results. A problem with the machine that reads the blood made the wait a bit longer.  This was not a problem for him. Why you ask?  Because it gave him more time to watch the movie he had on his laptop.  Now tell me when have you sat down to watch a movie in the morning without feeling guilty?  So far he feels good but tomorrow he gets the vaccine again.  One more thing.  When the vaccine spots get itchy he is supposed to put an aloe and vitamin E lotion on the spots.  Today the nurses told hm he was not using enough and the skin was dry.  His reply?  It is a guy thing to not worry about a little dry skin. I think the people getting 6 sessions of the vaccine do have to watch their skin.  Dave will switch to the listeria bacteria at his next round. (and he will not be able to drive himself)  A whole new set of questions will probably show up.  Meanwhile we don't know how to determine if  his body is doing what is supposed to do and is fighting hard.  

Random thoughts again

Enjoy the way my mind works, there is no rhyme or reason                   Thought 1.The first Monday of June did not meet expectations.  It was more like November and became more so when the weather man was talking about the snow level dropping to 3000 feet.  Now if you think I have whined a lot about the weather this year I had a reason.  Meteorologists consider the months of March, April and May as Spring.  According to the airport this was the wettest spring in the 71 years of record keeping.  Of course the inch of rain in one hour at the end of the month did help that total.                     Thought 2   Monday was also a weird day for Dave.  Lately we have been so focused on the cancer diagnosis, getting tests run for the clinical trial, getting into the trial and the first treatment that a free day when he felt good left him feeling at a loss for a while.  Part of this feeling was not knowing what feelings were because of the cancer and what were the side effects of the treatment.  Caregiver Yuki found a web site that really helped with that.  One of the interesting aspects of the treatment is how long the vaccine spots have stayed red, swollen, hot and hard.                                                                                       Thought 3,   Even I have to admit all the plants did love the rain.  Everything is growing and blooming. The roses are covered with buds and ones that have opened are huge.  Some of the lavender is almost 3 feet high.  (Note to self:  No matter how much you love the smell when you rub against the lavender, don't do it after it rains.)                                                                                Thought 4. I have always known that I had a tendency to transpose numbers but now that I have to make a definite effort to type each letter I have the same trouble with letters. Unfortunately some are still words so spell check does not catch everything. All the times I typed trial I had to be careful not type trail. I often say to myself - i before e except after c or when sounded like a as in neighbour and weigh. or when 2 vowels go walking the first one does the talking. The other problem I have is with the word anticipation on my computer. as I type the computer displays several possible words and continues to change word possibility as letters are typed. This can reduce the number of key strokes, if you click on the correct one. Fortunately Dave catches most of my errors.                                  The four thoughts above were written Tuesday evening.  Now it is Wednesday evening and last night and today have been pretty rough.  Last night he had chills and fever and ended up dripping wet and changing 3 times.  Today he has spent most of the day sleeping in the basement media room. I hope it means his body got the message from the vaccine and is  fighting the cancer.  Twice today Quincy was found curled up on the rug outside the door to the media room.    Now you can  see what this blog would look like without my favorite editor.