Wow, unbelievable that it has been 21 days since I last posted. Time has really gotten away from me. More unbelievable is that it has been 307 days since Doug's Stem Cell transplant. These last few weeks I have been busy with work: getting a new school year started, trainings, busy with church related activities like attending Diocesan Council, preaching and teaching Sunday School. I also am teaching a class for NNU totally online and this has required me to develop some new skill sets. Life is returning to normal or perhaps a new normal.
Doug has continued to improve I am happy to report. He is now able to shower on his own in our regular shower stall. This is a big milestone. He is also getting more independent in walking and it is becoming more functional. He can walk with the walker,
and not just for exercise and practice walking. He is standing in the kitchen at the counter to make himself coffee and to get things out of the cupboard. In general he is becoming more independent. Such a Godsend.
We both had dental appointments this month. I was concerned for Doug's teeth after the chemotherapy, intubation and long hospital stay. But no need to worry. Both of us got an excellent report that our teeth are healthy and no cavities. Hooray! We both had eye appointments as well. Again, both of us got great reports. Doug's eyes can be corrected to 20/20 and my eyes have actually gotten better. It is so nice to have good news from the doctors.
Today we presented to the adult Sunday School at St. Michael's Cathedral on "Life as Pilgrimage". Putting the slide show together, required me to look at pictures over the last year and to read parts of the blog from last winter. I have not gone back and read any of the blog until now. Doug had not seen many of the pictures and had no memory of the time that he was so sick. It was like hearing it for the first time for him. We both end this day, feeling even more grateful for Doug's continued recovery and filled with hope that the progression of his MS has stopped.
And so we pray:
God of Life, God of Journey, God of Hope we give thanks for all that we have and all that we have been blessed with. We are grateful to call ourselves pilgrims. As we traverse this path to wholeness and healing we have found so many fellow travelers on the journey who have been willing to walk with us. We are grateful for their company and for their support. We are especially grateful for the strength that Doug has felt in the last week and for the hope he is experiencing in seeing his own recovery as possible. For this we give heartfelt thanks. Stay by us now dear Lord as we sleep and greet us in the morning, filling our hearts with hope as we look forward to the promise of the new day. Amen.
Sunday, September 24, 2017
Tuesday, September 5, 2017
September 5, 2017: Day 286
Last night we returned from 2 days in Cascade. Each time we go up the trips get a little easier. Doug becomes a little more independent and enjoys being there a little more. I realized that for several months since he came home, I have been pushing him back into a normal life. It would be so easy to give up and just accept this level of improvement. It takes real work to heal and needless to say we have to believe in healing to continue to push forward.
I started to write a post last night and remembered that last year before Doug had the HSCT treatment I had made a list of Doug's symptoms and had him rate them on a scale between 1 and 10. I have done nothing with that list since we got home. We certainly had not planned on him being paralyzed and having to come back from that. This list lost importance. After he was paralyzed I started a separate list keeping track of each movement he recovered. I looked at that list last night as well, but decided to only update the original list because what most people want to know and what we wonder about is if the HSCT worked. Has the progression of the MS stopped?
Reviewing the list, t was heartening to see that physically he has almost recovered the skills that he had before we went to Mexico. Not quite, but almost. His balance to stand independently without the walker is not where it was last year yet, but close. He is not as strong as he was. The good news is that he no longer feels dizzy. Before he felt dizzy every day and took medication for it. He no longer takes this medication. Also he had daily pain in his abdomen. He took pain medication everyday. He had to sleep in the recliner to help control his stomach pain. He no longer as any pain, anywhere. He no longer takes pain medication. Last year he was having frequent choking (daily) and he would pound on his chest. He no longer is choking. He has had migraine headaches for years and years. He is not having migraines. Also he rated numbness in his feet as a 2-3, which was fairly low. But he does not have any numbness in his feet now.
What do I make of all this? Do I dare hope? It certainly looks like Doug is not progressing with the MS and he is indeed recovering some. I could not say that before, because he has been recovering from polyneuropathy. We had no idea what was going on with the MS. In the past he has never had a respite from the progression of the disease. If one year after HSCT he is the same or better, this indicates that the treatment has worked. Of course we can be more certain in a month or two, but we prayerfully hope this is true.
God of promise and hope, on this pilgrimage of healing and wholeness you led us to Puebla in search of healing and wholeness. We give thanks for the healers that cared for us there and for those who have been with us on this journey since we returned. As the days go by, we feel your presence with us. We give thanks for Doug's continued improvement day by day. We pray for strength and courage to continue on this journey. Fill us with hope with the new day and we pray, heal Doug of MS. Amen
I started to write a post last night and remembered that last year before Doug had the HSCT treatment I had made a list of Doug's symptoms and had him rate them on a scale between 1 and 10. I have done nothing with that list since we got home. We certainly had not planned on him being paralyzed and having to come back from that. This list lost importance. After he was paralyzed I started a separate list keeping track of each movement he recovered. I looked at that list last night as well, but decided to only update the original list because what most people want to know and what we wonder about is if the HSCT worked. Has the progression of the MS stopped?
Reviewing the list, t was heartening to see that physically he has almost recovered the skills that he had before we went to Mexico. Not quite, but almost. His balance to stand independently without the walker is not where it was last year yet, but close. He is not as strong as he was. The good news is that he no longer feels dizzy. Before he felt dizzy every day and took medication for it. He no longer takes this medication. Also he had daily pain in his abdomen. He took pain medication everyday. He had to sleep in the recliner to help control his stomach pain. He no longer as any pain, anywhere. He no longer takes pain medication. Last year he was having frequent choking (daily) and he would pound on his chest. He no longer is choking. He has had migraine headaches for years and years. He is not having migraines. Also he rated numbness in his feet as a 2-3, which was fairly low. But he does not have any numbness in his feet now.
What do I make of all this? Do I dare hope? It certainly looks like Doug is not progressing with the MS and he is indeed recovering some. I could not say that before, because he has been recovering from polyneuropathy. We had no idea what was going on with the MS. In the past he has never had a respite from the progression of the disease. If one year after HSCT he is the same or better, this indicates that the treatment has worked. Of course we can be more certain in a month or two, but we prayerfully hope this is true.
God of promise and hope, on this pilgrimage of healing and wholeness you led us to Puebla in search of healing and wholeness. We give thanks for the healers that cared for us there and for those who have been with us on this journey since we returned. As the days go by, we feel your presence with us. We give thanks for Doug's continued improvement day by day. We pray for strength and courage to continue on this journey. Fill us with hope with the new day and we pray, heal Doug of MS. Amen
Tuesday, August 29, 2017
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
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
Thursday, August 24, 2017
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.
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.
Wednesday, August 23, 2017
August 23, 2017: Day 273
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.
Thursday, August 17, 2017
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
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
Tuesday, August 15, 2017
August 15, 2017: Day 267
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
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