Roller Coaster Ride

I started to write this on Friday when we knew Dave would be coming home on Saturday if nothing new reared its ugly head.  For some strange reason I could not concentrate.  :-)  I decided to still post because of the content and explanations. 

What a week!  I never did like roller coasters, and this week was no exception.  Tuesday was the low point.  The daily blood test showed Dave’s kidney function numbers were elevated from the previous day after the doctors tried going without the IV fluid overnight.  If the kidneys did not start working better soon, we would need to decide what we wanted to do.  When hospice becomes part of the discussion you know tough times are ahead. 

Fortunately Wednesday brought better news as the numbers improved.  He began to look less yellow and was more on top of things.  One of the interesting things we learned this week was the impact poor kidney function had on the brain.  After hearing this from several doctors several different times, we finally believed it.  Even more convincing was the change we saw in Dave.  One doctor did say he might not ever have a clear memory of the previous days.  Once there was some improvement then they could start switching from IV drugs to oral medications.  Getting Dave off of the IV drugs was important because they were not going to release him until he was off them.  Having 3-4 doctors checking on you every day makes a busy day.

He Is Home !

Dave got home about 5 this afternoon.  Yahoo!   It was a long day for him and Todd and Kari.  They came home armed with lots of instructions and lists.  Included were new prescriptions and over the counter medicines that would not stress his kidneys. An even bigger list prompted a clearing of the medicine cabinet of the cold remedies. head ache or body ache and other.  We did keep a few things to put in the guest bath.  After the past week we did not want any chance for further damage.  The last meeting was with the dietitian.  Basically he needs a low fat diet with natural foods.  One of the big concerns is the additives in packaged or prepared food.  Another concern was with alcohol.  He can have one very small glass - 4 ounces a day.  The last direction was to eat often and slowly. For a person that tends to eat quickly and not snack these two could take some time to change. Limited wine might also be a problem but I got the impression that how he felt the next day would take care of wanting it.  Now we just have to figure out our new routines.

overly optimistic

Saturday Dave went to Emergency with dizziness and very low blood pressure.  After some investigation they found that he had a kidney infection caused by the blockage of the bile duct.  He was admitted to the hospital and given fluid and antibiotics by IV.  The ER staff was wonderful as they explained each step and kept us informed.  Thanks to computer records they were able to quickly compare Saturdays blood test and Mondays test with all his previous ones to see his normal.  (our experience shows again the value of computer records - they are NOT an invasion of privacy) Our primary care doctor was out of town but his fill in is wonderful.  Not only did he have time to talk to Todd in the hall and acknowledge our frustration with the nurse and doctor running the clinical trial but he actually called with an update on Sunday.  No matter how hard you try it is very difficult to always be there when the various doctors are there.  I was fortunate to talk to the renal specialist.  In answer to my question she explained that the kidney function was slightly elevated in  Mondays blood test and unless you looked back over several tests it would not be significant.  After 24 hours of antibiotics the blood levels had remained the same.  This is good, now we wait for the lower levels to appear.  They want Dave to walk but only with supervision.  Obviously they have learned from experience - his bed is wired to alert the nurses station if he gets up.    I will try to post up dates as things change.

MUCH BETTER

The day started with sunshine that was a good indication of how the day would be.  It takes a special type of friend to drive Dave at 6 AM so Todd could stay with me.  Thanks Tom.  Caregiver Cindy came early, but even so we had already had a call from Dave saying he was going into the “room” soon and expected to be in recovery about 9:30.  Sure makes a difference being the first one of the day.  Todd had him home before 11:00. 

The stint had been blocked so that was probably the cause of most of his misery the last few weeks.  Now the new stint is stainless steel so that should help.  Hmmm, I didn't ask the “shelf life” of this stint.  After fluid and a snack he went to bed and slept almost 5 hours.  That is probably the longest stretch of undisturbed sleep in weeks.  Already he looks less yellow.  (How many of you remember the commercial - you wonder where the yellow went when you brush your teeth with Pepsodent.)   An expected sore throat makes his voice raspy.  Thinking what went up and down his throat makes me want to gag.  (This from someone with a permanent tube down her throat.)   Saying he had an endoscopy sounds better. 

Continuing on the sunny day theme was my BCI session.  When I had scheduled it Dave was going in for his first listeria infusion.  I thought it would be a good distraction and make the time pass for me while he was in for an all-day session.  Having a 93% success on the calibration section last time put some pressure to duplicate that.  Just after I started, the cuff in my throat that makes the air go to my lungs rather than out of my mouth, started to leak.  It was a very small amount that made a slight noise on each breath.  Being the stubborn/bull headed person that I am I continued on thinking I can do it.  Well I could not; the score was a dismal 73%.  We added some more air to the cuff and started over.  Time now to FOCUS, FOCUS, FOCUS.  Next round was much better with a 91%.  YEAH, now onto spelling real words. 

Starting with level 4, I was able to quickly go through it.  Moving on to level 5, I was successful even though Dave came home in the middle.  Betts paused the computer and when we resumed I was able to go right back.  That was very satisfiyng and something I had wondered about.  Each session had been in a quiet calm atmosphere.  How successful would I be in a more normal environment?  Today certainly tested that. 

After finishing level 5, I went on to free spelling.  This was my opportunity to spell whatever I wanted.  It followed the same format, letters would be flashed in random order and I was to FOCUS on the letter I wanted.  This time the phrase was my choice, and it was the first time I had needed to use the space symbol.  On the two sentences I only had to back space once! This time I had enough sense to stop when I was beginning to get tired so I ended on a positive note.  The only negative was that I had finished everything.  Betts will soon be going to an international conference so I hope she will come with new ideas and the team will find more ways for me to play.  As you can see it was a sunny day in many ways.

UPDATE ON DAVE

Many of you have asked how Dave is doing.  Depending on the day my answer would vary.  Last Monday I would have said not bad, you can tell his body is working because of his need for sleep.  Tuesday probably would have been the same.  Wednesday was a different story as he felt yucky and slept most of the day.  Fortunately Thursday was better and he enjoyed having a friend take him to Costco.  Just getting out of the house was a boost to him. 

The previous paragraph was written Monday afternoon while Dave and Todd were at an appointment with the palliative care nurse practitioner.  I think I had mentioned meeting with them early on.  For some reason we had not followed up on the meeting.  Dave had been checking in with the nurse handling the clinical trial and getting very frustrated.  Everyone commented on how yellow he was and he was always tired.  Each time he talked or emailed the nurse about back pain or his yellow color, or that his urine was darker than before the bile duct stint was put in, she would tell him to drink more water.  Drinking 64 ounces a day of water also means having to go to the bathroom lots.  How much more can anyone drink?  

Getting the palliative team involved was the best thing to do.  Besides really listening, the focus is on the person not the trial.  Coordinating care, follow-up on prescription, ordering lab work and adjusting medications are all part of the job.  Good thing Todd got the appointment because the blood tests for some of the liver functions were terrible.  Bad enough that changing the stint was moved from the 20th to the 5th.  So now we might get an idea if the fever and pain are because of the cancer or the trial or a blocked bile duct.  Moving the date for replacement of the bile duct required moving the first infusion of the modified listeria bacteria.  This is good and bad.  Dave has been told that it will make him feel like he had a terrible case of the flu.  Good that he doesn’t have to deal with it this week.  Bad that he has another week to worry about it.  In addition 2 weeks after the infusion he will get another full set of CT scans that will show if the tumor is smaller, the same or grown.  I think that will help us mentally.

Oh, and then to top everything off, our Hotmail account was hacked, and several people were told Dave was stuck in England and needed money.  Fortunately none of them sent any, at least not to our house.  So when it rains (opps – bad word to use in Oregon), it pours.

Thanks to all of you for the heartfelt continuing questions and concerns about both of us.  You cannot imagine what a help they are.

irritating

As most of you know we were hacked.  Hope it did not mess up anybody else.   Of course if you want to throw away $1500 you can send it to us instead of the hacker.  :-) 

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.