August 29, 2017: Day 279

These past few days have been busy for me with the beginning of the school year and preaching and serving at two services this past weekend.  Doug had to stay home with Trixie on Sunday while I was at church.  It was too long for Trixie to be home alone and too long for Doug to be out.  They did well together while I was gone.

When I got home, Doug and Trixie were ready to go out.  We decided to go to the dog park and then out to get something to eat.  Unfortunately it was really hot. Being out in the sun and heat can be really hard on Doug.  I did not realize how fast his energy level was draining.  By the time we got to the car Doug could not support himself when he stood to get into the car and started to fold to the ground. I was not strong enough to hold him up.  Luckily a young, strong man, pulled in right beside us.   He graciously came over and helped to lift Doug into the car.  We have not had this happen since May.  Perhaps we were over confident in his abilities.

In recovery after HSCT, the patients often talk about the first year being a roller coaster.  Old symptoms come and go.  Hopefully Doug's experience was one of the expected set-backs. The problem with recovery is that you are always concerned that perhaps you might be one of the statistics, one of the folks who has not had the disease stopped.  For Doug, it has been more of a roller coaster than most, with ending up sick and paralyzed.  Just getting back to his previous skills before HSCT has been such a challenge.

While he took a dip in recovery on Sunday, Saturday had been a really good day.  Doug got up in the morning and said maybe I should try showering in our master bedroom shower.  It is a walk-in shower with a  4 inch lip you have to step over to get in.  It does have bars in the shower to hang on to.  He has been sitting on a seat in the guest bathroom that slides across the the bathtub.  We also have a handheld shower in there that he has been using.  Using this shower is a big step forward. Especially when you remember that when he first came home he was still taking bed baths.

 Doug was able to take his shower in the master bath and stand to shower with the support of the bars most of the time. And after showering he was mostly able to dress himself.  He has come along way since April.  I was glad when he asked to try showering in the shower and that he did well with it. Usually it is me pushing him along to try more independence.  Overall thhis week he has been trying to do a little more.  I came home last night and he had set the table.  This is the first time he has done that in almost a year. I was grateful for the help, but mostly grateful to see him wanting to do more.

And so even with the set-back at the dog park, Doug has tried to do some new things this week.  We pray for continued movement forward.

Holy God we give thanks for all the blessings of this week.  We are thankful that Doug is doing more and pushing himself a bit. We are thankful for the recovery of our friend Joanne who is out of the hospital now after such a scare last week.  We are grateful for the beginning of the school year and the hope and promise of a new year.  And we pray for all who are in harms way with Hurricane Harvey.  We hope for the end of the rain, for lowering flood waters and for the sun to shine.  In your name we ask it.  Amen

August 24, 2017: Day 274

It was a special day today.  It was the first day of school in the Kuna School District.  I love the beginning of the school year. I had the opportunity to be in several schools. It is fun to see all the kids happy faces and the teachers excited to meet their new classes.  It is hard to believe that this is my 36th year as a professional educator.

I did not get home until late today.  But some time in the afternoon Doug sent me a text that said "Everything is normal here".  That is kinda a big deal.  It is nice that I can leave and be away all day and know that Doug is doing well enough to take care of his needs during the day and that he and Trixie can look after each other.  I actually think Trixie misses me the most.  While Doug still has a ways to go we are grateful for this progress.

We received news today of a friend of ours who was left paralyzed from the chest down in May.  She had to be hospitalized last night with a significant infection, having a seizure and was not very responsive.  Our prayers are with her this night.  We have journeyed together through life for the past 20 years with this special woman and her family. We pray now for her healing.

Almighty God, we pray your healing power and strength to surround Joanne and to make her well. We pray for her family, as they care for her and love her.  Strengthen them and fill them with hope and grace as they continue to encourage Joanne in her healing.  In your name we ask it.  Amen.

August 23, 2017: Day 273

It has been 6 days since I last posted.  The days in between postings have been sporadic.  I have been quite busy .  We went to Cascade this past weekend to celebrate the eclipse.  It was a last minute decision.  It seemed foolish not to go to Cascade when we have a place there and we could experience the eclipse in it's totality.  It was well worth the trip.  We enjoyed devoting our entire morning to enjoying the eclipse. Our friends Lisa and Doug and there two kids came up enjoy it with us.  It was really amazing.  I told my daughter that I am committed to "living deeply".  If there is anything that I have learned in the last few months is that life is fleeting and that we need to take advantage of  our opportunities and spend time enjoying life that is what is right in front of us.

Just before leaving on Friday, Doug's new wheelchair arrived in a huge box.  Last night I took the time to figure out how to get the box open (it was from China) and then figured out how to get it out of the box.  Tonight I worked on putting parts of the chair together.  It is now ready to drive.  We were able to get this brand new chair that has bigger wheels on the back that makes it more stable for only $400 with our trade-in. This chair weighs 15 pounds more, but it collapse much more easily.  Hopefully the additional weight won't be too much for me to lift. Tomorrow night I need to figure out how to collapse the old wheelchair and get it into the box to send back.

It seems like everyday I still have quite a list of things that Doug needs help with or has things that need to be one for him.  While he is more independent he still has lots of needs.  I keep trying to encourage him to move more on his own without the wheelchairs, but he is not very sure of himself. Please pray with me for his continued improvement.

And so we pray:

God of constancy and love.  Help us to remember to see you in all things and to be thankful for all that we have in our lives.  Thank you for showing us the miracle of creation in the spectacular alignment of the planets in the eclipse.  We take so much for granite.  But when the planets align, they remind us of the small miracles that we have in our lives each day and we give thanks.  Be with Doug as he continues to heal.  Give him confidence and faith in his continued improvement.  Give him strength for the work that he must do to continue to improve.  In your name we ask it.  Amen.

August 17, 2017: Day 269

Last Friday I called EZ Lite Wheelchair to get help with getting Doug's wheelchair repaired.  When we were in Mexico it collapsed with him in it on our way to his new Stem Cell Birthday.  Then as were getting ready to go to Vegas  it got stuck and would not collapse.  I fixed it.  But, before we got home it got stuck again.  I decided that it was beyond me and I needed help.  The guy at EZ Lite was very helpful.  He said "What do you think about us exchanging your old chair for a new chair?"  I could not believe it.  We have had the chair for 2 years now.  Doug loves it.  It is handy because it will collapse like a suitcase so that it can be carried in the trunk of any car and easily taken on airplanes.

The chair was suppose to arrive today.  Doug waited anxiously all day for it.  But no chair.  I went online tonight to find out where it was but found that it said a delivery had been attempted.  We have no idea when that was.  And so we are still looking for it. We hope it will arrive early tomorrow before we go up to Cascade.

I was suppose to be preaching on Sunday, but my dear friend David Wettstein is letting me off the hook.  Instead we are going to our place in Cascade so that we can watch the eclipse.  We have a place right in the path of totality and so it seems to me that we should take advantage of this.  This  will be the only time in our life times to see it.  I told my daughter that I am living deeply.  I have learned that life is short.  I will preach the next week instead.  Thank you David.  Bless you.

And so we pray:

God of Hope and Expectation we give thanks for all good things, but especially for companies that support their products and provide excellent service to customers. We also look forward to seeing and participating in the eclipse. A reminder to us that we live in a wonderful and marvelous universe.  We celebrate creation and all that is in it.  Amen

August 15, 2017: Day 267

Yesterday, I got back from 3 days at Women's Camp.  Thanks to Dan flying up from San Diego, and staying with his dad, I was able to get away.  And I love being at Paradise Point Episcopal Church Camp on the Payette lake.  I enjoyed friends, kayaked, hiked, had my heart skip a beat on the ropes course swing, ate good food, sang at the campfire, made jewelry, worshipped and spent several hours in silent retreat reflecting on our "hearts desire".  It was wonderful.  Life felt almost "normal".

What does normal mean?  Well for me, it means, I was not holding onto worry or concern for Doug while I was away.  I was doing things that I love doing doing with people I care about. I was following my heart's desire.  I was resting and enjoying the present moment.

So often when we are living our normal lives, we miss the goodness all around us, we get caught up in things that take away our happiness.  I know this, because this has happened to me in my life frequently.  There was a moment, this weekend when sitting on a rock point, looking out at the lake that I noticed how content and relaxed I was.  I was not waiting for the other shoe to drop.  I did not have to worry about rushing home.  I did have to be constantly mindful of my responsibilities. I think I have been on guard, with worry/concern, even when I have not been aware of it.  But not this weekend.

I knew Doug was in good hands, so happy to have his son with him.  And Dan was wonderful with Trixie.  He took her out with him jogging each day, played with her, and cleaned up after her.  She loved him and even decided to sleep with him, her new friend.

And so we pray:

God of Beauty and Grace, we are so grateful for time to refresh and renew.  We are thankful for people and places that warm our hearts and fill us with love and contentment.  We are thankful for the simple things that remind us of who and whose we are.  We are thankful for finding our heart's desire in family, friends and creation. Be with us now as we return to our regular daily life.  Help us to carry with us the contentment we have felt.  As our hearts were filled, help us to hold this feeling as we return to all the challenges we face.  In your name we ask it.  Amen

August 10, 2017: Day 262

Doug had a "Wellness" exam today by his primary care doctor.  This visit was just a part of a routine visitation schedule.  It makes me smile to think about it this way.  Doug has spent so much time with doctors these past few months, that having a "Wellness" visit seems funny to me.  The good news is that his primary care doctor was impressed his progress and for the most part he really is well.  She saw him 6 weeks ago, and she can see a difference in him in that length of time.  She asked if he could get up on the exam table.  With support he was able to do this, and lay down and sit back up. This is big progress for him.

We let her know how thankful we were for all her help in getting the Retuximab infusions.  She too was  excited that it worked out is hopeful that the progression of Doug's MS may be stopped.  It is so nice that she shares this vision for healing and wellness with us.

Lastly, I shared with her information from Clinical Ruiz about the immunizations that Doug needs to get.  He is going to need to be re-immunized after the HSCT.  We are not sure if it will be covered by his insurance and so now we need to contact the insurance company to find out what will be covered.  Apparently they often will not cover adults and we may need to go to Southwest District Health to get the shots.  One more hurdle in our pilgrimage to healing and wholeness.

Lastly we are excited to have Dan arriving tomorrow night.  Doug can't wait to see him and I am sad that I won't see him.  But I am thrilled that I will have a couple days off to rest and recuperate and so thankful for the break.

And so we pray:

God, we are so grateful for our doctor and her willingness to walk this journey with us: sharing in our challenges and rejoicing with us in our accomplishments.  We are grateful for Doug's continued improvement. And we are so thankful for our family.  We are thankful for the support we have. It is wonderful to have come this far in life, and know that our kids are wonderful, successful people who have hearts for others and for us. We are blessed.  Amen

August 9, 2017: Day +261

We are so grateful for so many well wishes and support from so many friends today.  And we really appreciate all of the prayers.  Doug has not had any reaction to his Retuximab infusion that he had yesterday.  Today was a good day for him.  He is feeling well.  Today he was up a little more on his own and seems encouraged to keep trying to do a little more.

His Home Health services ended almost 2 weeks ago.  He goes to see his Family Practitioner doctor tomorrow.  We will ask her opinion for getting physical therapy in the community.  I think having physical therapy helps Doug to push himself along.  Movement is still hard for him and so it is hard to keep motivated to keep exercising.

We are very excited that Dan, Doug's son and my stepson, is flying up from San Diego on Friday.  He is going to stay with Doug so that I can go to Women's Camp for the weekend up in McCall.  Doug is really looking forward to seeing him.  I am really looking forward to having a few days away.  I have not had a break from care giving since last October.  I am ready to having a few days to rest, read and recuperate.

We pray:

God who sustains us, we give thanks for small favors. We are thankful that Doug is feeling good and comforted for having received the first Retuximab treatment.  And we are so thankful that Dan will be coming for a few days.  Be with us now as we discern the next steps of Doug's treatment with his doctor.  Guide us to do what is right and will lead to continued healing. In your name we ask it.  Amen

August 8, 2017: Day 260

It is hard to believe it has been 10 days since I posted.  We just spent a week in Las Vegas with Angie and Tom and their kids.  With taking care of Doug and playing with the kids, the days went by very fast.  We decided to drive down, since Doug requires lots of things carry with us to care for him.  However that meant 2 days of just driving.  That was a lot of driving for me, and Doug got pretty tired. It was really good  to get out of town for me and have time to play with the kids.  Doug mostly stayed in the room and watched TV and listened to books.  He did enjoy a couple of buffets and he was a good sport, willing to travel with me.  My sister gave us a timeshare in Las Vegas, which make our stay there very comfortable.  Angie planned lots of kid friendly activities that they all loved.  We celebrated my grand daughter's 16th birthday.  She and I did the CSI Experience at the MGM together, solving 3 cases.  She is interested in becoming a forensic pathologist.  It was really fun for just the two of us to do this.  We loved it. I feel so lucky having a 16 year old who loves to hang out with her Gramma.

Today was a really big day for Doug.  He got his first Retuxan infusion. We have been trying to arrange this for almost a year.  When we went to the clinic today, only 5 minutes from our house, it seemed almost unbelievable that he was getting it done.  We had to be there at 8:30 A.M.  Doug had to have blood work to be sure that he was well enough for the infusions. We had to wait for the results and finally at 10:00  they started the infusion and he was done by a little after 12:00.   Doug had no reaction to the infusion.  He was a little tired when we got home, but no other side effects.  I was tired, but I think it was more emotional.  It is has taken so much time and work to get all Doug's care arranged besides caring for him, and finally we made it to the last big medical prodedure he needs as part of his HSCT.  Now he will receive infusions every two months for one year.

The other great relief today was to learn that Doug's major medical will cover the treatment. Since he has already met most if not all of his out-of-pocket expenses we will have to pay very little for these treatments for the rest of this year.  This in itself is a big relief.  Getting these treatments here, rather than having to travel back to Mexico, is savings us thousands and thousands of dollars. Today we both just felt relief, that all of this is working out and that Doug is finally getting this treatment.  I felt the weight coming off of my shoulders.

And so we pray:

Faithful God, God who listen's to our prayers even when they are not spoken, God who knows our needs before we ask; we give thanks for all of the blessings we have been given.  We thank you for family, we thank you for rest and for play, we thank you for safe travel and we thank you for the blessing of faithful doctors who care for Doug and listen to our needs. We thank you for hearing our needs and showing us the path to getting our needs met.  Be with Doug in the days to come.  We pray that the medication will be protective and keep the MS at bay. We pray for wholeness and healing.  In your name we ask it.  Amen.