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.