Christmas

Christmas Eve started in the afternoon. Kari and Garrett arrived about noon and the fun started. Todd had made gingerbread and(had enough pieces to give away unassembled houses) assembled houses for everyone so we gathered around the table and decorated them. There was a lot of Who has the red, and pass the m & m s. It was fun to listen to the chatter and watch everyone work.  I could not pass up the opportunity to make a comman Dave remark.  Stick your tongue out of the other side of your mouth and it will work better.   Walker told us fell down once when Poppop said that.  To our what?!?  He explained that he had been concentrating so hard on his tongue that he didn't look where he was going.  I am so pleased that they are comfortable talking about him.  Each house was different and fun.                  Caregiver Melissa and I then came home to put the ham in the oven .  As a surprise Cindy had ordered a Santa face bread.  Everybody did a little bit and it was a relaxed and pleasant evening.  After dinner there were a few packages to open.  Years ago I had started giving everyone pajamas Christmas eve.  The big kids had asked me to stop because they did not outgrow them.  However this year was different.  Everyone got flannel pajama pants and one of Dave's tee-shirts.  There were a few tears with the smiles.

Christmas is almost here!

Wow,  Friday was busy.  It was orientation day for another new caregiver.  This time it was at my request.  Lynn had worked for another vented ALS patient for almost 2 years.  He had a very fast progression and had justification to be difficult.  I had asked for her because the training would be more an orientation. Plus I didn't want to get stuck with low coverage again.  She will work one day a week but that would keep her up to date on my needs so she could cover for another if needed.  As an added bonus it turns out she lives close enough to walk and her dogs name is Quincy!                  Being Christmas we had a bit of running around to do.  First stop was to show Kathy the completed  apron.   Then it was off to pick up some wetsuits for the older boys.  I had been emailing with the shop so they were ready for us.  Talk about service, they brought things out to the van.  Dave would have loved to wander around the place.  They carry wind surfer equipment, stand up paddle boards, snow boards, kayaks and surf boards along with everything you might want to go with the boards.  Living in Oregon you can do a little of everything . Then we made another stop to pick up an ordered item and on for a needed supply.  Yes, I am being vague for a  reason .             When we got back it was not raining so we took Quincy and me for a walk.  Sure felt good to be out.  Since there were 2 pairs of hands they were able to wrap some presents after our walk.  Sure did a lot to get me in the Christmas spirit.

Much Better

It took 3 days for me to finish the previous post because so much was going on.  First,  Todd was not happy with the haircut he gave Walker so he took him to a shop.  Todd sent an email picture but he looked even better in person.  When they came over for make your own pizza night, you could tell he was pleased.  In a few years the girls are going to really go after him.  I do hope it is a few years away.  Of course this grandma is not biased.            Thursday was a big day for another reason.  Caregiver Cindy has always said she would not sew as I had started most of the caregivers.  Well she finally asked me if I would help her make an apron for a good friend.  She didn't want just a basic apron, but a 50s look with ruffles.  When we went to buy fabric we spotted one of the clerks wearing just the perfect look.  It was not the easiest pattern because of the curves but I thought she could do it.  She picked companion fabrics so all was good there.  When she began cutting out I realized how little she knew and how nervous she was.   Friend Kathy once again came to the rescue.  She filled a bobbin, threaded the machine and corrected a small cutting error.  Even better she told Cindy that the iron was her friend.  We started sewing the ties.  After she pressed them she realized the iron was good.  It took most of the day to make it but she did it. Our Cindy took pictures of cg Cindy's apron to send to Kathy. When cg Cindy made the yeast dough for the pizzas she added Italian seasoning and Parmesan cheese that was delicious.  It was a great day for someone with low self-image.

Not all bad

Even though I was grouchy Tuesday it was not that bad.  Todd and the boys came over in the late afternoon. Surprise! Walker cut his hair again.  Actually Todd cut it.  Before school started he had cut about 6 inches off so it was just below his shoulders.  Now it is about chin length.  Looks great. He has wonderful thick hair.                    When he was here I sweet talked him into cleaning my back up mouse.  Since I use the mouse with my foot and it sits on the foot rest it gets dirty.  When the dirt builds up on the connectors it will not move the cruiser.  That rarely happens at a convenient time so Dave bought me a back-up.   That way they can be set aside and cleaned at a convenient time.  The first time he showed Walker how to do and the first time Walker did it by himself were exciting.  Now it is just one more job.  I must admit it makes me so proud to see him get the necessary tools and be so careful when he works on it.  Guess I did not need to wear my witch socks after all.

BEWARE

Back in September when Davis was in Fred Myers he saw a display of  Halloween knee socks.  As Kari shared at his memorial service, Davis believed if one was good two was better.  Therefore he bought 4 pair.  Two are definitely Halloween but one is okay with my orange shirt anytime of year.  The 4th pair are special.  They look like regular black socks until you get to the top. A lovely witch graces the top.  These are good for any day I am feeling witchey.  If I am wearing my witch socks beware, for I am in a witchey mood.  Yesterday was a witch sock day.

One of the fun things about living in Oregon is the weather.  Yesterday was sunny so we decided to run errands while it was nice.  By the time I was ready it started to rain HARD.  Then it was lighter but thick like it was thinking about snow.  That soon passed and the sun and blue sky were back.  This morning was the same but this time it was actually snowing.  After watching for a time I decided it might actually stick and emailed some friends. That was it, the snow stopped and we even had sun for a while.  I don't think this southern California girl will ever girl tired of the weather changes.

Disturbing times

Watching yesterdays news was a difficult thing for everyone.  Just last week the boys were talking about having a lock down drill.  Walkers class was outside at PE and could not go back in.  The younger two were not as clear on the different bells.  When Todd asked if they knew what lock down meant they did know.  It was when someone that did not belong was in the school.  I was thinking how sad that they needed to knew that.  It feels so much more personal than the duck and cover drills we did.  At least the lock down drills are more practical then hiding under our desk with hands over our neck.  How that would protect us from a bomb is beyond me.  When that was changed to an earthquake drill it made sense.  Wish we didn't have to have any drills.  Fire and earthquake drills are easier to handle than lock down drills.

Correction

How can a grandma make such a mistake?  Miles turned 7 on the 12th not 8.  If I say it quietly does that make it less of a mistake?

After a couple of weeks in a funk I think I have begun to understand why.  I had a great Thanksgiving with long time (not old)friends followed by a wonderful birthday where I had Kari and Garrett all to myself.  On top of that so many of you fantastic people sent cards and emails.  I thank each of you, it made me feel very special.  Then TCWSM did a fun dinner with chocolate milk shakes instead of chocolate cake.  I can be fed small portions and really enjoyed the chocolate.            So with all the wonderful days why was I such a grouch?  A visit from a social worker from the ALS association helped me put everything together.  Just one year ago my gall bladder started the process leading to the tracheotomy and the change in life style. I sometimes wonder if we hadn't been so focused on me would we have caught Dave's cancer earlier.  Knowing that is a unproductive frame of mind I try to move on. There are more productive thoughts. One of the pleasant thoughts is the peace that he felt the morning. after the dream that led to his sermon.  I have to admit I am a little jealous about how peaceful he was.. Usually I write a Christmas letter touching on the highlights of the year.  This year they would be low-lights.  Don't have any idea what I will do this year.             Fortunately I have many interesting things going on that stop the watching TV and playing solitaire on my computer.  Spending time with others where I feel a connection in the ALS support group and a sewing group at church really is helpful.  Who can stay down when a grand-son has a birthday?  There are 2 for us.  Walker turned 11 December 4th and Miles was 8 on December 12.   Sam has to wait until June.  Tonight the boys all decorated the tree that Kari helped get last Saturday.

thoughts

The last week I have had thoughts to share but when I started to write it was a battle.  Consequently I have several partly written posts, eight emails in drafts and unwritten thank you notes.  If you were wondering perhaps this week will go better.  I need to write so I can turn my brain off when I wake up during the night.

There was a lot of thought about this past weekend. Traditionally Todd's family spent the weekend with Cindy's family at her Aunts house in Eugene. They spend Christmas with us.  Last year they decided to spend Thanksgiving day with us and join Cindy's family for the rest of the weekend.  Now I had to figure out what I would like to do this year.  Todd was concerned because my birthday was Friday and he felt they should be here.  However if  they were here it would be just like last year with a huge hole without Dave. Kari and Garrett planned to be here along with his mom.  Marlene was not able to make her annual trek either.  Everything shaped up when I learned that two families that are long time friends, that now live in Springfield (next to Eugene), did not have kids coming from California.  They were happy to come here.  So everyone had to drive but the Thursday morning traffic was light.  No one had to do a lot, since we each had a part.  Caregiver Cindy was excited about doing some cooking.  She did not tell me until after the turkey was in the oven that it was her first turkey.  With several cooks in the kitchen at times it was fun to be part of the action.  TCWSM were able to spend the entire weekend in Eugene with all the cousins.

Enough

As if my Caregivers did not have enough to do, they now have to put ear drops in Quincy's ears.  Fortunately they all like dogs.  It is usually frustrating when something is wrong with an animal.  This time we knew.  He likes to have his ears rubbed, but this time he yelped.  Caregiver Sherry looked in his ear and it was gunky.  (gunky is a scientific word isn't it ) He also didn't want to get up in the morning when I did.  We really got worried when he did not beg when cg. Kelseyann cooked an egg and he didn't beg.  Now he is back to normal.  Even though he is spoiled by some of the caregivers I am a little bit happy to here him beg.

Interesting

I am in a better mood today than when I last wrote.  With the gray rainy day that is almost surprising.  Just writing about it helped.  Several of you sent supportive emails that I appreciated and friends gathered for an evening visit.  In addition several friends that missed Dave's service gathered to watch the video.  Because Dave's father was not able to come up for the service a video was made.  Interesting that I found the video comforting.  The kids and I had written our messages separately and all 3 of us focused on his laugh and humor.  Pretty good legacy.  Then minister. David, started with playing a section of Dave's sermon.  I could almost hear Dave chuckle about speaking at his own service.  Listening again to the many sections of Dave's sermon that David used reminded me of the morning when Dave told me about the  dream that led to his sermon.  He was so peaceful and calm, I could feel the difference.  I think I need regular reminders about the peace and the wonderful acronym. S.H.I.T. Surely He is there.

Best Layed Plans.......

After moving here one of the things I wanted was to get a dog.  Dave wanted a dog with hair rather than fur because we knew how much a dog could shed and hardwood floors show every bit of it.  Why did I want a dog?  When I was gone a dog could make sure he got out of the house almost every day.  Like so many plans we did not ever consider that he would die first.  Now it is me that Quincy gets out.  Sometimes when there are other people here a caretaker or friend will take him.  Yesterday I was in a funk when caregiver Cindy said it is not raining and it is not that cold, lets take Quincy for a walk.  My first reaction was I don't want to.  However she had said the w word and he was ready to go.  How could I look at the big brown eyes and say no?  Quincy was doing exactly what I wanted him to do, only I was the recipient.  So we went.  My pity party was still determined to take over. Most of the brightly colored leaves had fallen and the bare trees fit with my mood. However Cindy was not at the party and continued to see bright red bushes and yellows that looked like the sun.  I had sent a text to Todd that we were going for a walk and he found us to finish the walk.  Between the fresh air and two people talking about how nice it was I couldn't mope any more. I do still wish life had gone as planned.  Dave would have had fun teaching Walker to drive and maybe even given him the car.  He also really enjoyed working with kids in the higher-level math classes. With all three boys he could help with projects and have lots of fun.  I know the boys can learn from me but I can not interact with them as he would have.

Pictures that make me smile

During Dave's final days when family was here we went through pictures.  There were so many great memories that we could share.  Unfortunately the clothes we wore in the 70s were really bad.  It was nice to remember all the events.        Kari took all the pictures and made two wonderful layouts about 3 feet by 5 feet.  (Another advantage of having an architect in the family is having the equipment to make large displays.)  After the memorial service we brought them home.  I had not had an opportunity to look at the pictures so asked that they be pined on the half wall that separates the kitchen from the hall.  They have lived there ever since.  Every time I head down the hall there are several favorites I look at.  Keeping the happy times with me all the time really makes me feel good.  I will share some with you soon.

Good Day

Long time friends Carolyn and Jerry and dog Monty were here Thursday to do projects for me.  It was time to drain the sprinkler system before we had freezing temperatures.  Todd and I had looked briefly and did not find either box. Jerry found the front one and we took a picture to help if it gets covered up again. While he did other projects Carolyn was busy inside.  At one point we left to do a quick errand.  Both dogs sat looking at the door with big brown eyes but were disappointed.  When we came back they stayed at our heels to be sure we did not leave without them again.   They each even followed their person to the bathroom!  Did they really think we had abandoned them?  Once the dogs were happy Carolyn was able to start on a sewing project for me.  I had collected tee-shirts from the recent ALS walk to make 2 tote bags.  Lined with red fabric with red handles they really came out great.  It is so nice to have friends willing to do projects I dream up.  Plus those that have the  willingness to take on several house and yard needs.

Quincy

Quincy has been staying close to me and is very attentive when we are getting ready to go someplace.  He doesn't bark, he just sits and stares at the door. Just a look makes you feel terrible if you don't take him for a walk.  Dave was the recipient of the sad looks and we teased about it.  Now I get the sad eyes.  A few weeks ago caregiver Cindy suggested we take him with us when we went to the ALS association office.  We figured we could call him a service dog if anybody asked.  When we went in the lobby a security person asked what floor we wanted and didn't say anything about Quincy.  Of course he gave and got lots of attention.  That gave Cindy incentive to take him more places.  His next outing was the fabric store.  He was fine for a while because Cindy took along a mat for him to sit on. He didn't like being in the shopping cart when he could not see us.  I think we will need to choose carefully where we take him. Since soccer season is over he is missing his outings .

IT WAS TEMPTING

Now that the election is over I can confess that I was very tempted to vote on Dave's ballot.  Oregon has a vote by mail system so when the ballots arrived I thought about voting on his too. I have been using a signature stamp for a long time and Dave recently had one made.  There were 2 local issues that I knew he would support and probably needed every possible vote.  One was for schools and the other for the library.  Of course the presidential race was also important.  Temptation was high enough that I actually talked about it.  If the ballots had arrived earlier I might have done it. As it turned out his vote was not needed so it was good thing I did not do it.

Crazy time

Todd and Cindy's house is next door to a church with a nice parking lot.  This is where many of the neighbourhood kids learned to ride bikes and still ride.  When I was there this afternoon Walker asked me to go out to the parking lot. I had a pretty good idea what he wanted, but asked why.  He said you will see.  As he pulled a crazy rider (a big circle with a seat in the middle and 2 wheels with handles that can be turned in opposite directions so the rider can spin.) out along with a tie down cable I knew I would be the power. Walker knows there is a bolt underneath my chair that is used to fasten the chair in the van.  He fastened the tie down cable to the bolt and to the crazy rider. By doing curves I could really get them going.  Must admit it was great fun but probably not very safe.

Another Story

Another story Dave told on himself occurred a couple of weeks before he died.  He often wanted  to take Quincy on a walk.   Caregivers and I really didn't like him to go by himself even using his walker.  For a while he was okay with us going if for no other reason than to shut us up.  After a while it became to much.  When he stopped treatment and went on hospise he began to get stronger and started going on walks again.  He even gained back 4 of the 40 pounds he lost.  Once again we had the argument about going alone but this time he won.  Being able to do something by himself was a real pleasure.  So  when he said he was going to take Quincy for a walk I said okay and nothing else and stayed out on the deck.  (If he was telling the story he would say something about how hard it was for me to keep my mouth shut.)  After a while he came back and said you will never guess what I did.  Proudly he said he forgot his walker and didn't even realize it until almost back.  I did not know if I should be mad or glad.  Choose to be glad with a little caution.

A Story

Like many other things with our family there is always room for humor. These stories will be retold like some that were shared at Dave's service.     I need to set the stage for the first one.  The last weekend of September was the Walk to Defeat ALS.  Kari had been in Fresno for most of the week and flew back to Portland so she could see cousin Robin and Aunt Margie before they flew out very early Sunday morning. Sunday morning Garrett and his mother Susan came up for the walk.  That morning Dave did not feel well so decided to skip church.  He had already decided the walk would be too much. We did not want to leave him alone so he chose Kari to stay with him.      After the walk Garrett and Susan went back to Eugene with most of Kari's clothes.  We had an appointment with our lawyer Monday morning and she planned to head to a work meeting right after that.  As it became apparent that Dave was not doing well plans changed and Kari did not have a change of clothes.  When talking with Cindy, Kari asked if Walker would mind if she borrowed a shirt.  Cindy mentioned one shirt that would be perfect because it had the old style big wheel on the front.  Walker said it would not fit because it was almost to small for him.  Kari put it on and said see it fits perfectly.  Walker muttered something about it being to tight.  With that Cindy explained that girls wear their shirts tighter than 10 year old boys.  Following Dave's example the shirt story was repeated often on Tuesday.

Feeling Loved

Last weekend was a long and tough weekend but I was with a wonderful family. With people arriving and leaving at different times I had family with me from Friday morning until Monday night. Being able to have a little time with many people rather than only one big gathering worked for me.

 
Friday morning started with former neighbor Marlene and son Nick. They had been spliced into our family tree a while back. Dinner that evening included sister Margie making her third trip here in a month. Her husband Mike.  Daughters Kym and family from Oakland, and Robin and family from Philadelphia made a pleasant evening. Both were making their second trip after recent visits to see Dave.  It was topped off with root beer floats. They were a special treat that PopPop had shared with the boys.


Saturday morning Uncle Paul and Aunt Dorie stopped by. Paul had started Dave on ham radio as a kid back when he had to know Morse code. There are many boaters that are happy that requirement was dropped. Lunch brought Sister Mary making her second trip but having her 3 adult kids with her this time. It was a make your own sandwich lunch. Fascinating how many of the adults choose PB&J when there were several kinds of lunch meats. Comfort food.

 
We all then headed to the church where the rest of the family met us. It was almost overwhelming to see the number of people, particularly because of the number of friends that were unable to be there. Most were doing grandparent things knowing that Dave would have said they belonged there. Even though we had received flowers at home there were many more at the Church. Following a Jimmy Buffet song that set the mood we shared memories. Kari, Todd, and I had independently chosen some humorous stories to share. We all missed his laugh but know he often retold every story we shared. To lead off the message a segment of his sermon was used. How many people get to talk at their own service? That just seemed like a Dave kind of thing.


After the service we all went downstairs for -what else - oatmeal raisin cookies, popcorn and olives. A long-time friend asked where was the raisin pie, his birthday cake of choice. Back at our house we all enjoyed Dave’s favorite meal, breakfast. My niece, Darien was there with her daughter to try and balance out the 6 boys. Kari's wonderful friends took over the kitchen and proved that architects can cook too. Many people had to leave early Sunday morning, but my sister Pat, brother Bill and sister-in-law Anne joined me on Sunday. This was a good visit and relaxing day. Plus Anne suggested a way to keep my foot warm and still let me use my toes and ball of my foot to move the track ball. Last winter I did everything with shoes. After being barefoot since June I could not go back to shoes. Pat made sure Quincy got loves and we all enjoyed a walk. We had dinner at Todd's house where I could really see the boys growing as they joined in the conversation around the table. Anne and Pat left early Monday morning while Bill stayed with me. Having him around made the house less quiet and he was able to help with several projects. All my wonderful family provided me with love as I moved along a new path.

It is the little things

I think I am getting along fine until little things catch me.  For the last couple of months we had been trying to find things that tasted good to Dave.  Yesterday when out shopping I would see something and think he might like that. Almost asked caregiver Cindy to get it. We also took Quincy to the groomers and the phone number they had was Dave's cell.  The last few months Dave had been going to bed around 7:30.  Sometimes to sleep or maybe read or watch a movie.  By that time of the evening his body said it wanted to be horizontal.  My body preferred being in my chair so evenings we often did our own thing.  No matter what when my caregiver me to bed he would wake up and wave.  No matter what I still look for that wave.  For the first week I had my sister and then Cindy sleep with me so it was not as noticeable.  Of course there are the times when I think I will think about telling him about something I saw or read. I am sure these times will continue but will become treasured.

Fall has arrived

Friday we had our first rain since June.  I enjoy the smells after rain but had to think about getting to the soccer games on Saturday.  Dave hated cleaning the mud off my tires and I know the caregivers would not like it either. After checking the schedule I was pleased to see that Walker had a 10:00 game at the only field where I could easily watch from a paved surface. That was a real bonus because many of his games had been at 8 on a field that was difficult for me.  It was the first time this season I had seen him play.                Kari came up that afternoon with the pictures she had scanned.  Really came out great.  When Todd came over the three of us had the opportunity to discuss again how we wanted the memorial service.  When we had talked with the minister before we were all so tired that he could have told us we had asked for dancing girls.  That is something Dave would have enjoyed. The mental image of dancing girls going up the church aisle makes me smile.  Then we all had a good time at dinner hearing about all the soccer games from the players and the coach (mom).                    Apparently we wore Qunicy out with the soccer game, walk and evening with the boys because he did not want to get up Sunday morning.  Caregiver Kelseyann had to make the bed around him.  No, he is not spoiled.  After the three of us got back from church he was ready to be awake.                    Neighbour Liz was here in the afternoon to help with the flower arrangements.  She has studied Japanese flower arrangement.  Liz is one of those people that can take the still nice flowers out of a wilting arrangement and make it look fresh.  Caregiver Yuki and I just watched and hoped we might learn something.                  As you can see I am very well taken care of.  Every day there are many cards with wonderful notes.  Emails arrive too.  I do feel the love around me.  Thank you all.

Planning

As we think about how we want to remember Dave various things come to mind.  Attire is one thing.  As soon as Dave retired he donated all his ties except the Jerry Garcia ties. He hated wearing ties. At the same time all but one suit went too. Kari's wedding was a fond exception and he happily wore a suit and tie.   So you have all been notified NO TIES at his service.  I think many of the people at church know that he decided to go with me when I told him he could wear jeans.  A friend said that he thought about wearing jeans.  Everyone knows Daves laugh that could be heard above any conversation.  We will just have to hear that laugh in our heads.  Fortunately we do have his voice recorded when he gave his sermon.  How do you remember someone with varied interests and a irreverent sense of humor ?

Thoughts

I really don't know where to begin.  We have all experienced so much love this past week.  My nephew, Chan, was here for five days just to help Todd.  We were able to focus on the mail that had been ignored for a week and pick Chan brain about things that needed doing.  All the people around Todd and Kari have shared love, hugs, cards, and food.  I have had lots of love, hugs, visits and cards with wonderful messages.  Kari will be here Saturday and I am thinking of reading the cards with them.  I don't know if we could handle all the wonderful messages at one time.  It is so comforting to read what people remember about him.

Reflections

Last week remains a foggy experience.  It was a whirlwind of sadness, hope, love, caring, sleep deprivation and even laughing.  Unfortunately the laughing was mostly when looking at pictures from the 70's.  Did we really think those clothes looked good? I have stories running in my head that might surface in later posts as I use this forum to adapt and adjust.  There are so many that enabled all of us to function.  The hospice staff were all fantastic.  Cindy's mother made the 12 hour drive from Bakersfield to be available for the boys anytime Todd and Cindy wanted to be away.  Food from various people so that eating was easy.  Our caregivers all went the extra mile to take care of everyone.  Now we all need to find and adjust to the new normal.

Dave is free

Friday, October 5th Dave was set free in the early morning hours. Memorial service will be Saturday October 20 at 3:00. At Rose City Park Presbyterian Church.

Almost

Last night I did not write and once again realized how therapeutic it is to write.  Cindy strongly suggested to Todd that he needed to spend the night at home and get some sleep. Kari was desperate for sleep to so Daves two sisters, Margie and Mary took over for the night.  Everyone wanted to be sure he did not have any discomfort so a schedule was made. Mary and Margie each set alarms for the schedule and both Kari and Todd slept hard.  Slept hard until 5 when I rang my call button thinking it was near the end.  It wasn't.

thanks you

The outpouring of love in all the emails and visits is so wonderful.  Hospice was able to get the pain under control.  This morning he was given a few doses of liquid morphine until the the slower acting drugs kicked in. The rest of the day he seemed comfortable.  He would rally briefly with each visitor to greet them and then drift off.  Both sisters flew up today and he was able to to talk some to them. When his father called he said a few words so they were both comforted. 

Hospice is wonderful

Connecting with hospice is continuing to be every thing we hoped it would be.  Dave had another rough night even with giving him extra pain meds. Fortunately Kari was still here because the caregivers are limited in what they can without being delegated by the nurse.  We talked with hospice again in the morning and Anne, the nurse, arrived about 10.  She ended up staying until almost 6.  Anne called the hospice doctor who ended up staying almost 4 hours.  The initial effort was to relieve pain and the location of it.  With a morphine muddled brain the answers were not always prompt or accurate.  Finding the area of the worst pain was not hard.  Just a touch told that.  It was less than 2 weeks since the doctor had seen him and she could easily see that his belly was much more distended.  This could be caused by several things and was probably a combination of several things.  Because we know cancer had spread to the liver we could assume that was part of the problem.  Liver cancer pulls and holds water in it. Who knows if that is the entire problem. Very possible that the pancreas is getting into the action too.  Additionally he had not peed all day so that could be part of the problem.  It was decided that an ultrasound would help answer that question and after several phone calls arrangements were made for tomorrow morning.   Meanwhile Anne put in a catheter.  Strangely nothing came out.  After about an hour nothing had happened so it was taken out.  Anne wanted to talk with the doctor again and would get back to us.  Mean while the next shift nurse would be bringing a pump that would deliver drugs under the skin for a more consistent pain relief.  Because of the unsuccessful catheter the plan was to go to the hospital tonight and do the catheter, the methadone (sp?) pump and the ultrasound.  Hospice made arrangement for transport and but it was delayed.  Meanwhile we were checking on him..When they asked about his breathing and were told it was slowing his transit moved up in priority.  That meant the fire department came too.  So now Todd and Kari are with him at the hospital and I am doing my therapy.  They just called and the catheter and pain pump are done.  One more thing to do. I hope it does not take long because we are all sleep deprived.

Where to Begin

So much has gone on since I last posted that I don't know where to begin.  The last 24 hours have been rough.  Dave woke up with severe pain and cramps.  Kari and Garrett were here for the ALS walk and were sleeping in the basement.  Dave has made a habit of keeping his phone with him so he called Kari.  The first thing I knew was when she was calling the hospice nurse.   Fortunately they are very responsive and had given us an emergency kit.   With the nurses guidance Kari gave him some of the liquid morphine from the Emergency kit. It is intended for quick release.  A few hours later he had more trouble and I pushed the remote doorbell that is my call button.  With receivers in the basement and with my caregiver they both came running.  Once again hospice gave Kari the instructions she needed and we were all able to get a few hours sleep.   Giving him the regular pain medicine did not do the job so back on the phone.          While the rest of us went to the walk Kari kept Dave drugged and asleep most of the day.  Late afternoon he was up for a while without to much pain.  After a brief rest he sat at the table and ate some dinner.  Unfortunately we tried to do a little to much and the pain came back.  Now we are all headed to bed hoping for a better night.

Great Hugs and Tears

The past weekend was another special time.  Dave’s niece, Kym and family came in from Oakland.  They stayed at Todd and Cindy’s, where the energy of 5 boys could safely be let out.  I think it was an exhausting weekend for all the boys, but no one wanted to stop.  Sure glad I am not one of the parents that had to get them up and ready for school this morning. 

With 3 of the boys 4 soccer games in the morning, there was time in the afternoon for Kym and Simon to visit with us.  With no kids around, we could talk freely, and Kym could have a good cry and hard hugs without her boys worrying about Mom crying.

Once again Todd and Cindy fixed a great dinner.  Todd likes to cook everything including bread on the barbecue.  Cindy is the homemade ice-cream queen.  They are a great team. 

On Monday some long time Bakersfield friends who now live in Springfield (neighbor to Eugene ) came up to see us.  They also brought their son Will, who was visiting them from Lake Tahoe.  We could not remember the last time we had seen him.  His greeting for Dave was a big, long lasting hug and misty eyes.  Dave has always been close to Will, so the visit was really special for both of them. 

Right now having small groups of visitors really feels good, even if we end up visiting with someone almost every day.  Talking with Kym made me realized that those of us that see Dave daily or frequently have it easier.  We can deal with everything in small pieces as changes occur, and then focus elsewhere for a while.  Add in the thought that they probably are saying a final good bye and there is a need for big hugs and tears.  In fact, all of those hugs are a special gift to Dave which he really enjoys.

 

 

Hospise at Work

Wow, hospice does not waste any time.  Last Monday the nurse, Gail, was here.  She reviewed the medication list especially the pain killers.  Dave takes a long lasting pain pill every 12 hours, and a fast acting one as needed.  When he told her the number and frequency of the short term pills, she immediately suggested an increased dosage in the longer term pill.  They went through the others medications, and decided what to keep and what to discontinue.  All the information is put into the computer so it is available to whoever is on call. 

In addition, the nurses and doctors meet once a week to discuss new patients and review the existing cases as needed.  Todd was unable to meet with Gail on Monday because Sam was getting a mouth piece to help correct the mouth he inherited from his father and grandmother.  Gail was available after the morning review meeting, and so was Todd, so she volunteered to come out again the meet him.  When she arrived she said the doctor would be coming too.  While we waited we had a few questions and found out more information. 

It would have been nice to know that cancer tumors use huge amounts of calories, and at the same time the tumors send a message to the brain that you are not hungry.  No wonder everyone was pushing food.  And it was not Dave being picky about food.  Knowing the reason is so helpful in explaining Dave’s 40 pound weight loss and lack of appetite.  The doctor did her own assessment and covered the questions Gail had brought up at the morning meeting.  She supported the recommendations Gail had made so Dave was all set. 

Todd and Dave then went to lunch while caregiver Cindy and I went to the grocery store.  One of the nice things about hospice is they deliver everything.  Since some of the pain pills have a high street value, all prescriptions for them must be on paper and cannot be called in or faxed.  Hospice can get 3 days of the meds with a phone call if Dave runs low by mistake. 

On Sunday Dave called again about the number of pills he had left for the short term or break through meds.  A nurse checked and said they would have them delivered Monday.  About an hour later the nurse called back, and after talking with the doctor, they suggested he take the longer lasting pill every eight hours.  Then this morning, Monday, the nurse came for the regular weekly visit.  They really take care of everything.  So nice to be spoiled!

more good times

In 1983 we met some people who introduced us a wonderful new activity: sailing.  These new friends (thanks Patty and Tom) invited us to join them in a charter sail in the Virgin Islands.  It was a perfect fit: he was an engineer and she loved to read and cook.  That was the first of 5 trips with family, including one with Dave’s dad, and another with Todd's then girlfriend, now wife, Cindy. 

Dave was totally hooked and started subscribing to sailing magazines and going to boat shows.  Somewhere along the line I realized I needed to get interested too.  By this time we had become friends with the captain and first mate, Ann and Marvin.  We had managed to be in the same place at the same time every few years.  Sunday was one of those times.  They were returning from Alaska and visited a cousin in Portland.  Our morning had been very emotional with the stained glass window dedication, but we could not pass up the opportunity to see them.

It is strange feeling to say goodbye when we know that it is the last time for Dave.  There are going to be many more, and I don't think it will get any easier.  Remembering my favorite saying from one of our sailing magazine can help.  “The difference between an ordeal and an adventure is attitude”.  We can cherish the fact that we have had the opportunity.

SPECIAL DAY

A few months ago some friends came to us with a proposal.  The sanctuary remolding committee had left a spot where the organ pipes had been for a stained glass window.  This new window would match the window on the other side of the church in size and shape.  Our friends wanted to dedicate the new stained glass window to us, and have us involved in the design.

Questions swirled through our minds.  First of all, "why us?" As Dave so nicely put it, we are just ordinary people.  Then we thought, "we don't have the slightest idea where to begin".  Fortunately a theme came to us.  In Dave's sermon (I think many of you have seen or read it), he talked about putting your troubles in a backpack and throwing it into still waters where it did not make a ripple.  So the search was on for a picture of still water.  Fortunately our friends found several that would work.  We did our usual, you look at it and don't tell me what you think, system.  Then I look and see if there are any we agree on.  Yeah, it worked again.  Dave’s first choice was one of my top four. 

The stained glass artist (also named David) was excited about the picture.  We had the opportunity to visit his studio and see the window in progress.  The medallion of our still water was finished,  along with most of the window.  He told us about the types of glass that were in the existing windows, some of which is no longer available.  There were floor to ceiling shelves full of different types of glass.  It was fascinating.  Get to the point you say.  Okay.

Sunday was the unveiling and dedication of the window.  Again we were almost overwhelmed when reading the inscription "for your love and inspiration".  Dave has always enjoyed getting up and talking in front of people, but this was different.  Every time he talked about what the window meant to him, he would start crying.  I had put my thoughts in my computer so it could speak for me.  He decided he would do the same thing.  Since I have different voices we tried a male voice, but he wanted to use the same voice I was using.  The one thing I forgot to do was to tell people when it was talking for Dave.  He saw the stream as his life flowing into a vast ocean of uncharted territory.  He is trying to look at this transition as a new adventure in a life that has been filled with adventures and wonderful people. 

 

What a Relief

Removing uncertainty has already improved our lives.  Dave woke up Friday morning refreshed because for the first time in over a week he did not have to do something medical.  His face no longer reflected the stress.  Saturday he called a friend to go to breakfast, his favorite meal.  Ending with the library he had a good morning getting home in time for a nap. 

Meanwhile I was watching two of the days 4 soccer games.  This week they were very close and in places I had been before.  Some weeks are in places that I have never heard about.  You would think that by now with 3 kids playing we would have been to most of the places the league plays. 

Wednesday we met with the social worker and head nurse from hospice.  Really nice people and they take care of everything.  There were a few forms Dave had to sign so they could handle all routine things.  Next week we should meet his nurse.  It is so nice that all prescription will be handled along with any other needs.  No more trying to get a doctor to call back. 

There were a few questions I found interesting.  One was, “are there any relatives that they are not to release information to”?  Another was about the health care directive.  Did everybody agree? I can only image the situations that can develop when a family disagrees with each other.  Situations like that must really make a hard job harder. 

 Some of the questions were getting to know you questions.  Had to laugh when they were asking about family, and we talked about grandsons.  The social worker, Anne, was sitting where she could see some pictures.  Her comment was, “I am seeing some girls too”.  Todd explained his 2 oldest boys don't cut their hair.  I think they asked the kind of questions to really get to know us in a short period of time.  Of course that included talking about the 6 years we had spent half the year on the boat.  Not only did it shape us into the people we are today, but we also know that we took the opportunity and took that step to do something most people only talk about.  It is a good thing there were no medical appointments this week because we were busy.  It is nice to be able to choose where time and energy are spent.

 

No More Forks

Thursday was one of those days where our emotions were on a roller coaster.  Dave and I had talked about the effects the treatments were having on him.  During the last week, he has had six one liter infusions of saline water, two very painful MRI’s, and he was exhausted the entire time.  We made an appointment with the kidney doctor to try and answer a few questions, and to get some straight input from her. 

No one could answer the question about why his kidneys had failed again right after the chemo medication was administered.  She discovered that our primary care doctor had restarted Dave on a blood pressure that had probably irritated his kidneys.  Coupled with the chemo, it was too much for his system.  She then talked about several different things Dave could do.  But she said all we are really doing at this point is chasing numbers on the blood draw tests.  The question of long term comfort for Dave had gotten lost along the way.  She actually came out and asked Dave what he wanted.  He said he wanted to be comfortable and feel good enough to be able to do some things with his family.  Right now all he was doing was going to the labs, getting infusions and tests, and coming home exhausted.

She said that would be her goal in the same situation.  She would not do any of the things she had just talked about.  Just go for pain management and fight the fatigue as much as possible.

 Dave had asked Tony to take him to the doctor’s to be the interested bystander.  When they returned Todd and I sat down to discuss with them what had been said and our feelings.  We all came to the same place.  When we went to the oncologist he had several question to try and figure out why things happened the way they did.  He had been on vacation so he could only read the notes and talk to the nurses. 

Soon after he came in the room I realized he was thinking the same as we did.  The clinical trial had put Dave in the hospital for eight days.  The chemo made him extremely tired and played a role in the latest kidney problem.  It was now time to work with hospice to make the time left as good as possible.  The doctor would keep up with how things were going through the hospice nurse, and we could call to see him at any time. 

Intellectually this was a fairly easy decision because it is the best way to make sure the quality of life is the goal.  Emotionally is an entirely different story.  I have to deal with it in small pieces.  This is one of the pieces.  From the beginning Dave had said his goal was quality not quantity, and we lost sight of that after the hospital stay.  Somehow the recovery got mixed in with treatment.  Now we are back on track.  Hospice called later in the day.  Our first meeting with the nurse is Wednesday at ten.  Meanwhile we will be learning to find what really is important. 

Feeling Guilty

Yesterday was the monthly ALS support group and after a speaker and discussion the talk turned to the walk.  The staff person that organizes is so enthusiastic. People that have participated before talked about seeing 4000 people lining the riverfront.  It is exciting and I know I would be unhappy if I did  not go. So far all I have done is write one letter to previous donors that the staff person put in the details and sent out for me by email.  Doing anything else just seems hard.. I keep thinking that after we know the plan for Dave I will do something about the walk. Unfortunately we are going a different direction with each new development and are always looking for the one more test to get more information .                Wow, just  looked over what I had written and it sure sounded like whining.  Our kids will tell you that I do not like people that whine.  Now the question is do I post or not.. Sometimes just writing is enough to get everything out of my system but if you are reading this you know I needed more.           Oh, were you looking for information about Dave? Well, the blood test today was about the same as yesterday with the kidney function just in the normal range.  Yeah, no ice cold saline dripping in his veins.  Any wonder that he is always cold. Tomorrow he was able to get in to see the kidney doctor in the morning.  She is pretty straight forward so we are figure she will come out and say if she thinks the gensar (sp?) was the cause of the kidney problem.  Then later the oncologist and try to get a recommendation out of him.  So once again we are at another fork in the road.  Sure wish someone would pick up the damn forks.

What Does This Mean?

Today when Dave was once again getting his liter of fluid he had a call from the on call oncologist.  She had seen the MRI and there were no obstruction in his kidneys.  We think that it good and bad.  Good because the kidneys are not blocked.  Bad because things are not working like they should.  Even with all the fluid he has been given plus everythig he has been drinking he is still dehydrated.  We don't know exactly what that all means but it does not sound good.  When we see Dr. Crocenzi on Wednesday we think it might be decision time again.

Self Image

After I wrote the previous post I started thinking about how much our self image affects our outlook. For the last few years Dave had been working out three days a week.  This had really increased his strength and endurance.  Now all that is gone.  I know looking in the mirror every morning while shaving must be hard.  The idea of not finishing something was another stab at his self image.  You can try to be the same person inside while the outside is changing yet acceptance of the illness must be  acknowledged.  I  recently wrote an add looking for a nursing student for the night shift.  I think that was the first time I described myself as a patient.  The feeling was strange.  At support group and clinic it is person with ALS or PALS so patient is not how we tend to think of ourselves.  Our self image, if positive can keep us going.  Yet we need to acknowledge and mourn the changes to know what the next choice might be.

Keep the fulids going

Well Dave is getting his third liter of fluid this morning.  After the second one yesterday the blood test indicated the kidney function levels were still too high.  All the fluid should start cleaning out his system. Now he called to say that they are going to do a MRI to see if there is a reason his body is unable to flush out the toxins .             It is now Saturday morning.  Yesterday was a rough day.  For the MRI Dave had to lay on his back with a strap across his chest. He had to stop once because of pain in his side.  Tried again after adjusting the strap.  It  became just too much pain and he had to stop. Knowing the pain would stop if he lay on his side or stood up made it frustrating.  I don't know what bothered him more, the pain or quitting.  He kept muttering I finish things, I don't quit.  Knowing he had to face it again even with a handful of pain pills did not make an easy night.  Off he goes for more fluid which always makes him cold.  Then the dreaded MRI.

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.