January 31, 2017: Day +73

Doug getting his feeding tube removed

Today was the day that Doug has looked forward to; the feeding tube was removed slightly before lunch.  The dietitian came in this morning and met with Doug.  She said she had reviewed his calorie in-take for the last few days and she agreed to have the tube removed.  Then about 11:30 his nurse and his intern came into the room and said they were ready to remove the tube.  The nurse said "Who should take the tube out?" I, ever the protective mother bear said "The one that can do it the least painfully."  Doug did not care who took it out,  he just wanted it out.  And so the nurse coached the intern in taking it out.  Luckily, Doug did well.  Coming out is much easier than going in.  Doug was so excited! That tube was irritating to his nose and throat and was always getting caught on the blankets and pillow. Hurray!!! One more step in the healing process has been accomplished.

Then Conrad, the SLP brought Doug lunch.  He wanted to test him on more textured foods.  He cut up a piece of pork roast and fed it to Doug.  Doug did great.  No problems. He also allowed him to drink water.  Again, no problems.  And so Doug is now cleared to eat a regular soft mechanical diet and all beverages. That includes a beer for the Super Bowl!  He can eat most things, just not things like nuts, dry crusty breads, crisp fried potatoes, dry meats, dry fruits, raw vegetables or chewy candy.  He will have to wait a while longer for these items.

Look, no tube!

This afternoon I decided it was time for me to take a break.  Angie came over and we went to see La La Land. and had dinner.  This is the first movie I have seen a movie in months. It was great to take a breath. It was fun to escape to La La Land. It is such a great movie. I don't know if I mentioned this, but Angie has been serving on a jury for the past week and a half. The trial started the day of my surgery. Not the best timing with everything going on, but I suppose there is never really good timing.

Tomorrow, I go back to work. I will only go 1 day this week and then start working 2 and a half days a week next week.  I am so glad that Doug is doing so well.  He has improved so much in the last few weeks.  His medical issues have almost cleared and now he is able to eat regular food. He can also now advocate for his own needs. So we can now focus primarily on his physical condition.

Tomorrow, two of our friends have agreed to stay with Doug, keep him company, and help him with re-positioning his arms and legs and itching an occasional scratch.  I am so thankful for this help. He will love the company and I will know he is not lonely or left on his own.

And so we pray:

Holy, most gracious God, we give you thanks and praise for the continued healing of Doug.  We are so grateful for the tube being removed and Doug's ability to eat a typical diet. We are so thankful that Doug could move his arms in a meaningful way and stand on his two feet in therapy today.  We give You thanks for what seems so normal. We are thankful for good friends who share this journey with us and are willing to help. Surely, Your presence has been made know to us,  in so many ways this day and we give thanks.  We continue to look to You for continued healing and trust in your presence in our lives. Amen

January 30, 2017: Day 72

Doug says he feels like an elephant.  He has had his feeding tube hanging our of his nose since January 3rd.  Writing the 3rd of January seems crazy. It should have been much longer ago than that! When they tried to put the tube in Doug's nose on January 2nd it was awful.  He made them stop, it hurt so much. Unbelievably, they talked him into letting them try again and they got it in on the 3rd. When he was moved to Vibra on the 10th, the doctor said they needed to change the feeding tube because the one he had in his nose was the size of a fire hose. They put in a in a smaller one.  I dreaded them changing it, but unbelievably it went pretty well, not near as traumatizing for both of us. I had to help hold the tube in place.  Tube placement is part of my skill set.:) Everyday since that first day that the tube was placed Doug has complained and wanted it out.  It is very irritating to his nose and throat.  Not any fun to have, even though it has been life saving for Doug

Elephant Man

The nurse is in Doug's room now replacing the nose piece for the feeding tube.  I said to Doug, you know you have an interesting relationship with that tube.  First you hate it because it hurts and it is always getting caught on things and yet it provides you all your nutrition.  Sara, our nurse said "Yes, and you don't have to swallow these huge potassium pills!"  I am not sure Doug was finding much solace in our encouragement.

Why do I keep talking about this feeding tube?  Because it has been such a nemesis.  A week and a half ago Doug started eating pureed food with the SLP.  Then last Friday he began eating 3 meals a day and  the nurse began turning off the feeding tube during the day. Well, this weekend went really well.  Doug is swallowing the pureed food and talking clearly.  No choking!  So today we pushed our SLP Conrad a little and asked him how long until Doug gets the tube out. He knows that Doug hates the tube. And so he stayed later tonight and fed Doug dinner to evaluate how he is doing.  Doug ate baked Zita, California vegetables and fruit cocktail and none of it was pureed!  He passed! Conrad the SLP asked the dietitian to come down and we reviewed what he had eaten over the weekend.  She agreed to turn the feeding tube off tonight and Conrad will work with Doug to eat a soft menu tomorrow, not pureed, and then they will talk to the doctor.  He may get his feeding tube out tomorrow!  Doug is so excited.  We are so excited.  This feels like a really big step and will help Doug to feel more normal.  I asked Conrad if we could consider a Guinness beer for the Super Bowl since it has texture.  He said he did not know about Guinness but a beer could be negotiated.  Wow....Doug has not any had any beer since before HSCT.  Not sure he has any longing for a beer, but the best part is that it helps him to feel more like himself.  He is longing for normalcy.

And so we pray:

God of Light,during this season of Epiphany the light has been growing day by day and we are so thankful. The light is represented in the progress Doug is making. We give thanks for his steady improvement. Our hearts are filled with delight with the news that the feeding tube will soon be out. We pray that Doug's swallow continues to improve and that he will soon be eating his favorite foods. Amen


 

January 29, 2017: Day +71

We enjoyed the afternoon visiting with Thelma and Henry, our son in-law's parents and Fr. Dave brought us communion.  As our conversation drifted from one thing to another, the topic of when Doug was very sick came up.  I have not talked to Doug very much about the time that he was the most sick or about the life and death decisions I had to make, hoping that I was making the best decisions and honoring what he would have wanted.  Later when we were alone, Doug said I guess I did not realize I was that sick or the things that you did.

Fr. Dave bringing us communion

I have not talked to Doug much about that time.  I might reference when he was intubated once in a while.  Each day has been filled with enough to tackle and his ability to comprehend how sick he was has really just been coming back in the last week or so.  So today was the first time it started to sink in.  Yesterday Norm asked him about how it felt like to teeter so close to dying.  Doug said he did not know.  He only really knows that he was very sick and then he woke up and he was alive and was going to live. The thought of dying or death was not part of his awareness.  He just expected to live.

Thelma and Henry

Today I told him that the doctors did not know if he would live.  They had done what they could and it was no longer really in their hands.  I told him about the day that one of his doctors whom I had not seen in a couple of weeks saw me in the hall and asked me how I was.  I told the doctor that I was as well as I could be considering the situation.  He knew I was a person of faith and he hugged me.  He told me that right now Doug is in God's hands.

Doug plans on getting well.  He is a fighter. He is waiting to walk again.  He does not believe that it is his time time to dye.  That thought is surprising to him.  When he was on the ventilator he constantly fought the ventilator.  He was always over breathing it. Now he wants to know when he is going home.  I surely can't answer that.  He has lots of physical skills to recover. We hope he will be able to get the tube out of his nose for feeding this week.  I know that things could still turn south with his compromised immune system, but I also know he has a strong will to live and so for today, we just keep moving forward. Doug says, this is just a diversion on his way to wellness.

And so we pray:

God of light, shine on our path.  We feel certain that the path is leading us in the right direction.  We desire to know what is ahead so that we can anticipate what we will need, who we should take with us and what we need to assure that we are physically and spiritually prepared.  But then, it would not be a spiritual journey if we knew where all this leads would it? We would have no need for trust or faith.  And so we say yes, to the journey and yes to taking the next right step.  God of light, we thank you for the path and the knowledge that the Camino, the path always provides. With each step we pray you will strengthen our resolve and fill us with the hope that comes with the expectation of reaching our destination  Amen

January 28, 2017: Day +70

Daily I read a reflection by the Franciscan Monk Richard Rohr.  At the end of each reflection readers are invited to sit in silent prayer called centering and reflect upon a phrase.  Today the " Gateway to Silence" was "Awaken me to Love this day."

As I drove to the hospital, I felt more tired than normal and somewhat weary.  I have been making this same routine for so many mornings.  I am home really only long enough to do  a little laundry and sleep.  But, the only real explanation for the tiredness I felt today was that I am probably still recovering from my own surgery. And try as I might I couldn't quite shake it.  Then I felt my mind tumble into the worries and what-ifs.  I had to address myself and remind myself that no amount of worry or concern would change anything.  The only moment we have is right now.   It is important to live in the now.  And I reminded myself that I have no idea of all the wonderful things that might happen this day and not to get too far ahead of myself. And then I was reminded of the reflection: "Awaken me to Love this day".

So many days, Love comes from unanticipated sources and experiences.  Like today when I received a picture from our friend Torunn  from Norway, who went through stem cell transplant with Doug.  The picture captures the joy of the experience of receiving the hope of new life.  And then another friend sent me another message regarding the 10 characteristics of strong women.  And then our friend Norm came to visit at the hospital today. Norm is hospital chaplain.  He was so helpful to me when he visited when Doug was so sick and it was wonderful to share this time on our journey with him today.  Then I was reminded that it was my brother in-law's birthday today.  He was married to my sister who died in 1982, so many years ago. He is a wonderful man and  we shared an important time of our lives together. These are just a few things in this day. There are so many opportunities to awaken me to Love.  So many opportunities to experience God  in a very tangible way.

In times of tiredness, quietness, and change it is easy to withdraw and get caught up in the feeling rather than opening and inviting Love.  That is the discipline I think; that is the point of prayer.  We don't need to tell God our needs.  God knows. But we, we need to find the gateway, to open ourselves to the experience, to love, to heal.

My friend Barb, after reading my post from yesterday offered this prayer. We are so thankful for the prayers of others. We rest in these prayers and in the Love made present in them. Thank you Barb.

God of Comfort and Healing, Surround Doug and Eileen with your love and your perfect peace. May they both be keenly aware of progress in this long journey towards health and wholeness. If it be your will, strengthen Eileen's knee and grant her strength. May she continue in her loving ministrations to Doug. May Doug be always aware of your love through Eileen and all of us, and if it be your will, may he regain his strength and wholeness. We pray in Jesus name. Amen

January 27, 2017: Day 69

Somehow a part of keeping this blog of our Camino to health and wellness is also about counting the days.  Today it has been 69 days since Doug's stem cell birthday.  It is also one month since he was extubated, meaning he was taken off the ventilator. I spend a lot of time reminding Doug of his progress and there is genuine progress.  However as I write this tonight, I am surprised that a whole month has gone by since he was extubated and since we learned he could not move his own body.  I am not sure how much I can truly let in that he is not moving in a meaningful way.  I have to stay focused on his incremental progress.  After all the reason we went through the stem cell transplant was to avoid the day that he could end up in this position.  I guess the only reason I bring it up, is because as I looked at the white board in Doug's room today and looked at the date, it led me to reflect and to count the days.  And so, I will continue to count the days, the days until we reach our destination of health and wellness.

Doug had two big event's today.  First, he stood in a stander for 15 minutes. His legs have become so thin it almost hurts me to look at them, but with the little bit of muscle that he has, he stood and he was glad.  He wants to walk.  He told me this again today.  The second big even was that Doug ate 3 meals.  They turned off the tube feeding during the day, so that he would have some appetite to eat. For breakfast they fed him some kind of eggs that he said were terrible.  But lunch was better.  I brought him some "Naked" natural juice smoothie and the SLP got him some tomato soup, crackers and Cheetos.  He was so happy.  He did not have what he calls the brown, white and green lunch.  His SLP has given me permission to bring him some foods and I met with the dietitian to try to find some more desirable foods for Doug to eat.  Tonight I brought him some baked potato soup, blueberries pureed, and some chocolate mouse.  Not the most balanced meal, but a lot more enjoyable for his first meals since the 16th of December. His SLP today was great.  She has been in this business a long time and realizes that people need to have some pleasure in their life and not just eating food to meet a calorie count.

Today was much better day for me.  My leg was much easier to walk on and I had much less pain. I am hopeful that this surgery will now allow my knee to heal and I will be back to walking more easily soon.

Finally we enjoyed the visits of Rev. Jennifer and John.  They always brighten our day.  And we had a nice long visit with our friend Steve and enjoyed catching up on his family and life. Good friends and good company is always a pleasure.

And so we pray:

Gracious Lord of love and life we thank you for the gift of healing.  Our bodies are amazing and have such great capacity to be healed and to be made whole.  We see this in the small steps of progress and we are thankful.  We look forward to the day of total healing and pray that day is not far off. Be with us now as we count the days to healing and give us patience, hope and faith in the journey.  In your name we ask it.  Amen.

January 26, 2017: Day +68

Today was a much better day.  I woke up feeling much better, partly I am sure, from having been able to sleep last night and not taking any of the strong pain medications. Throughout the last 2 days I have been able to control the pain with only taking Tylenol. This is a huge relief. Certainly I feel like I had surgery. I am  not moving very fast, my knee is wrapped and does not feel stable yet. However, the pain is very manageable and I don't think much more than the pain I have been living with for the past 6 weeks. I am moving very slowly and being carefully.  My knee does not feel stable yet.  I can't tell you how relieved to be feeling as well as I am though.  The first day I really wondered if I had made the right decision to have the surgery. It will take some time to know if I did the right thing, but for now, I am doing better and I think I made the right decision.  Certainly this was much more manageable than a knee replacement and hopefully it will be enough.

My sister Kate took me in to spend the full day with Doug. We were both glad to see each other.  Each of us worrying for the other, but both of us so glad for the people who have cared for us.  Doug caught me up on the companions he had while I was away and I caught him up on the details of the surgery.  The staff at Vibra were great.  They were concerned about me and helped Doug with the things that I normally might have done. Ingrid and Jerry came by to check on Doug, just in case I had not made it over.  We had a lovely visit with them and we thanked Ingrid for scheduling people to stay with Doug while I was away.

Doug continues to make progress, even though it seems so slow to him which is completely understandable.  The nurse practitioner met with me as I was walking in the hospital and immediately wanted to talk to me about putting a peg in Doug's stomach for feeding.  I told her that I wanted to talk to the SLP and Doug and observe him eating today before we make any decisions.  Doug really does not want the procedure.  He feels he is ready to eat.  We talked to his SLP and I watched him eating lunch.  His SLP agreed with us and does believe that Doug should move forward with eating 3 meals a day and can now take small drinks of water.  He is still recommending pureed food for now and Doug is not liking the hospital food.  We are going to work on some alternativ foods that are more naturally the texture of puree.  Having said that he still did pretty well eating half his lunch and dinner even though he did not like the food.  I have to say, I tasted the green beans and they did not taste anything like green beans and ice tea with thickening is really disgusting.  The SLP said he would talk to the nurse practitioner and let her know we are going to move forward with eating meals and not consider the peg at this time.  We were so relieved and glad to have his support.  I have worked with kids with swallowing problems for years and I have to say I really do think Doug will be fine.  I think the will be ready for chewing soon. He does fine with chewing ice and his swallow is much stronger.

Tomorrow he is going to try to stand in a standing frame. This will give him the opportunity to practice bearing weight which will be good for him to gain strength and balance and for his body to be in a standing position.  He is looking forward to this.

Ingrid is hoping she might get some more calls from folks who could stay with Doug when I go back to work.  Next week, I will work on Wednesday and then the following week all day Monday and Tuesday and half day on Wednesday.  Doug so enjoyed having the company this week.  I know one day he will be able move more on his own but for the next few weeks we would love some help.  And so if you would be willing to sit with Doug for a few hours we would be so grateful. I so appreciate Ingrid doing this scheduling for me.  You may contact her at: 208-867-8351

And so we pray:

God of Light and Love, we give you thanks for the angels who sit with us, encourage us and support us. We give you thanks for hope that is offered through prayers, kind words and listening hearts and ears. Help us to see your work in our healing, knowing that some days will be harder than others, but that you are always with us. God of light, the journey is long and arduous, we give thanks for those who will journey with us and support us, in their companionship and help and in their willingness to help us in making the best decisions for continued healing.   Amen

January 25, 2017: Day 67

Surgery threw me for a loop.  It was a little more difficult than I expected.  The day started rather interestingly, my sister Kate was suppose to pick me up at 6:15 to go to the hospital that is just down the road.  She texted me and said she was running late and it might be closer to 6:20.  I  text her back, because the roads have been slick and icy, and asked her if she just wanted me to meet her.  I did not hear anything back until 6:22. She said she was at the hospital.  I was like, "Oh my Gosh", I was sitting at my kitchen table waiting for her since I had not heard back from her.  I rushed to the car, scraped the windows and dashed to the hospital

Things were pretty standard once I was there, rolling in at about 6:32.  The doctor initialed my knee to be sure he did not get the wrong leg, they started the IV and I was off to surgery.  I woke up in recovery with pain and they gave me some morphine.  When I was ready, they took me to another room to get ready to leave, when my sister noticed there was blood on the blanket. We showed the nurse (meanwhile I am having more pain and they give me morphine and Norco) and she pulled the blanket off and the dressing was soaked through with a lot of blood.  She called the doctor.  The PA came and rather ungraciously grabbed my leg and started taking the dressing off and I am like "Oh NO".  The nurse rushed in to help.  The pain shot to a 10+. They redressed it and said he said that the blood was probably because they had flushed the wound.  It was really hurting, I was not sure how I was going to get into the car let alone into the house.  Thankfully we have a walker with a seat and so Kate got that for me when we got home and I got into the house.

The afternoon, was pretty tough, I would half-way fall asleep and have weird dreams.Then around 4:00 I started getting nauseous with a headache.  I was pretty miserable all through the night and ended up being sick to my stomach with a headache not to mention the leg pain. Around 8:00 last night I decided no more pain killers they were worse than the pain.  I did not really sleep last night, but by this morning the nausea was gone and the headache mostly. I only had the leg pain which was much more desirable and it has gotten better through the day. I am doing better tonight.

Graciously, I was able to talk to Doug 3 times throughout the day yesterday to keep him up to date, thanks to our friends, Heidi, Ryleen, Jan and Melanie and then today thanks to Gerri, Ingrid and Kate. I felt much better knowing Doug had help if he needed it and company.  He was very sweet; he was more worried about me.  He did not want me to come see him tonight. He wanted me to rest and so I am.  My sister Kate went over to be with him tonight.  Last night Angie and Tom came over from Star and brought the jeep back to me from the hospital and checked in with us.  In the middle of all of this Angie has ended up on jury duty for the next 3 weeks in Boise.  We all seem to have a lot of irons in the fire.

But for tonight, I am doing better and Doug told me that physical therapy is going to work on getting him to a stand with special equipment.  He is very excited about this and really wants to walk again. Kate said that tonight he was able to push the button for the nurse with the regular call button.  I don't know how much help he needed, but clearly he continues to move forward.  I look forward to seeing him tomorrow. Hopefully it will be a better day for me too.

Thank you all for your prayers, thoughts and good wishes.  We feel so cared for and loved.  We are so blessed to share this journey with so many.  Thank you just does not seem sufficient for how we have been blessed.

My friend Liz sent me this prayer today from Our Daily Bread and I loved it and thought I would share it tonight.  It seems to fit perfectly.

Calm my spirit in the storms, Lord.  Grant me Your peace and the strength to walk through this day. Amen

January 23, 2017: Day +65

Quick note tonight because I have surgery in the morning and need to be at the hospital by 6:30 in the morning.

Last night I went home and the roads were pretty icy.  Even with the 4 wheel drive truck, I could feel the truck slipping.  When I arrived home about 10:30,  I was so pleasantly surprised to find the driveway, sidewalks, path to the mailbox and the front of the driveway dug out, where the plow had been piling the snow.  Our friends Lorretta and Mark came  over and worked and worked and did an amazing job!  They chipped with an ax, dug with a shovel, and removed all the ice and snow.  I was so thankful and felt so much safer walking into the house with my bum leg.

It was a pretty quiet day at the hospital, things were pretty much steady as she goes.  Angie, came by and spent a few hours visiting and had lunch with me in the cafeteria here. She and Tom have been out of town for a week and so it was nice to see them. Then our friends Nancy and John came to visit. It was wonderful to see them; we were appreciative of them making the drive from Parma with our current weather conditions.

Tonight before going home the nurse practitioner came by and wanted to talk about possibly putting in a gastric peg into Doug's stomach, saying that it may take time for Doug to have a strong enough swallow to get all his nutrition by eating.  This was disturbing for both of us, because the last 3 days the pureed lunches have gone so well.  It sounded so much different than what we had been hearing from the SLPs.  Doug said no, he did not want any more tubes.  I am concerned that inserting the peg could risk infection and I was not sure that it is necessary.  I told her we could talk about it again at the end of the week.  She said that was fine. But I must say it left us both a little distressed.  With me not being here for a day or two, made it even more concerning. Things have been going well day by day and I felt comfortable being away for my own surgery for the next two days.  This felt like someone had just thrown a wrench in our spokes.  Or as my our friend Rev. Jennifer said it left me with butterflies in my stomach.  Jennifer must have been my angel because she called just after we got this information. She helped me to step back and rest in God and prayed with me. Just what I needed.

And so I am off for home, Doug just got the last of his medications and we are saying goodnight.  It is hard for me to leave him and hard for him not to be with me tomorrow.

And so we prayer:

Holy Lord, be with us this night as we sleep.  Give us rest from our worries and hope in the healing that is to come.  Be with those who care for Doug while I am gone and with my surgeon in the morning.  And thank you Lord for all those who are helping us to make this surgery possible. We are so thankful for my sister Kate and Angie who will be with me and for our friends Heidi, Rylene, Jan, Melanie and Gerri.  We give thanks for Ingrid for scheduling, Loretta and Mark for shoveling and for all who are caring for us in so many ways.  We have so many angels surrounding us. Thank you Lord for your continued care.  Amen.

January 22, 2017: Day + 64

Today's lunch

 Today Doug had his second pureed lunch.  When I asked Doug what he thought I should write in the blog today he said you should as people who are reading the blog what they think I am eating, because I cannot figure it out.  If you ask him if he is excited to be eating, he says "Well yes, but I don't like that pureed food.  The food sucks but I eat it."  You can tell by the way he frames this experience that he is not mixing words.  And so I am posting a picture of his lunch and you can guess what he had for lunch. Whatever it was, I am just thankful he is eating.  He did really well, no aspirating and so we hope that he will continue to move forward and it won't be long until he is eating normal food.

Fr. Dave came this afternoon to bring us communion. When Fr. Dave celebrated communion, Christmas Eve Doug was on the ventilator, and could not participate and was not aware the family was gathered around him.  Last week, when Fr. Dave brought us communion Doug could only watch but not partake with the bread and wine because he could not take anything by mouth.  Today, before Fr. Dave came I asked Doug's SLP, Marsha if Doug could have a small piece of the wafer and wine.  She said yes and so for the first time in months Doug was able to participate in communion. It was a blessed time.

Fr. Dave and Fr. Doug

This evening, when I was helping Doug with range of motion and muscle strengthening, he started turning his right leg from left to right.  This is the first time he has made this motion with his full leg. He has been able to move his foot for more than a week, but not his leg, it was a delightful surprise.

A verse from the Psalms 27 in today's lectionary reads: Harken to my voice, O Lord, when I call : have mercy on me and answer me.

O Lord, we thank you for listening to our call, hearing our cry and for your mercy. We thank you for the healing that is continuing day by day in Doug. Tonight we rest, knowing that you are doing better things for us than we can ask for or imagine.  Amen

January 21, 2017: Day +63

Much has been happening in our nation these past few days with the inauguration of President Trump and the Women's March that have been happening throughout the nation and around the world. Some of the blessing of having Doug back, fully present, is that he is a news junky and we have had the TV going for the past 2 days.  Yesterday, in between therapies, medications, and visitors we watched the events associated with the inauguration.  We listened to the descriptions of the events  and all of the commentaries.  We are proud to be citizens of a country that values democratic values and the smooth transition of power. We were also proud so many people exercised those democratic values by marching . As  children both Doug and I grew up in the Civil Rights era. We have both spent our whole lives standing with and for the marginalized. We wished we could have marched, but we were cheering everyone on.

How does this conversation fit with our blog on healing and wholeness. Well, how sweet is was to focus on world and national events that speak to our heart. How wonderful it was to look outside of our own situation and share the passion with others who are fighting for human rights.  Because "Women's Rights are Human Rights". How right it is for our nation to focus on justice, mercy and humility.

Doug's favorite Bible passage is:

New International Version

He has shown you, O mortal, what is good. And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God

Pureed lasagna, peas, applesauce and ice tea

We should be merciful, because the Lord our God is merciful. Today we had several pieces of good news.  First, Doug no longer needs to be attached to monitors for respiratory, heart and blood pressure.  He has been stable for days. Second, we learned that his white blood and neutrophil counts have been raising and are now in the low normal range. Hooray! And, big day, Doug had his first lunch in 5 weeks. It was lunch, if not delicious, of pureed peas, lasagna, applesauce and thickened ice tea.  Blessedly he did not have any difficulties and will have lunch again tomorrow.  He was fed by the speech and language pathologist to be sure he did not aspirate and could swallow fully. He did well and we are so grateful for this progress.

Doug eating his first lunch in 5 weeks

Today was more normal than any day we have had for 6 weeks.  Doug was not itching all the time. He had less pain and he ate. We watched TV, visited and took a walk in the wheelchair. Praise be to God.

We pray:

Gracious and life giving God, we give you thanks and praise for all who work and walk for justice and mercy. May we all practice humility, so that we listen deeply to one another, hear with our hearts and act with compassion. We give you thanks for the gifts of healing that Doug is experiencing. We thank you for your compassion in hearing our prayers and shining your light of love and healing on Doug. We look forward to the day that we can again walk for justice, mercy and humility.  Amen

January 20, 1917: Day +62

It is interesting to live life where it is so blessed and painful.  The pain is the reality of Doug's body not functioning. He cannot move at all on his own. He is dependent on others for all of his needs. And at the same time, he is improving. I remind him time and again of his improvement.  Remember you have gone from moving nothing and barely able to express a word that could be understood and now you can do all these things; and I list the things. But in truth, he still can't move.

This is the darkness, not moving. But every time the darkness feels like it might over take us, I remind both of us of the light.  I remind both of us of the star. I know the star is real.  The light is not just my imagination and I know that the light gets brighter each day. Have you ever gone camping and you are sitting around the campfire.  The fire is so bright and warm.  But the night is getting late and you need to get ready for bed. Perhaps you need to go to the bathroom and so you turn from the light and face the forest that is behind you.  The forest is so dark.  You forgot it would be so dark, because for hours you have been focused on the light of the campfire. As you struggle into the darkness you are anxious to get back to the light. So it is with this journey.  Sometime, when helping Doug with range of motion exercises, we both can see how weak he is and how his muscles are not responding, but at the same time, I am telling him look what you can do. You can see light or dark. Do you choose the light (star) or the darkness (forest)?

Well, so far, the light always wins. And today, there was more light. Doug had a swallow evaluation today. He was nervous about this because it meant putting a camera down his nose to watch him swallow different types of textures. The reality of the procedure was easier than the fear of doing it. The camera is very small and the Speech and Language Pathologist used Lidocaine to ease the pain. The good news is that after the study, Doug was approved to have a trial lunch tomorrow of pureed foods.  We are very excited.  This is a step toward getting the feeding tube removed.

Then tonight when I was doing range of motion exercises. I found that Doug was able to pull his arm into his stomach with just the littlest support from me. And today when the aides were turning him to change his sheets he suddenly was holding the side of the bed. He grabbed it himself when they turned him. I still can't believe he did that and I don't know how it happened

Finally I want to thank Penny Stubs for keeping Doug company this morning.  Her companionship allowed me the time to take our dog Stryder to the vet. Doug really wants to see Stryder, but first he needed to get his shots updated.  They were due right before Christmas. As soon as Doug is no longer in neutropenia, I will be able to take Stryder for a visit.

And so yes, the light is growing.

God of Light and Hope,  guide us on this path of healing. Help us to forget the darkness that surrounds us.  Help us to concentrate on the star. The star that directs, lights and comforts us. Shine brightly on Doug, so that he can see the healing that is his and the healing that is awakening in him each day.  In your name we ask it. Amen.

January 19, 2017: Day +61

Doug sitting in a wheel chair, with the quilt
that our daughter-in-law Corinne made.

Tonight driving home, I was pondering, when my daughter and I walked the Camino de Santiago in Northern Spain.  As we walked the 500 mile pilgrimage, no day was the same other than walking.  Each day we saw whole new landscapes, stayed in very different places, met different people. We encountered whole new challenges each day with the path, the mountains and the aches and pains.  To some degree I feel the same about this journey.  No day is ever the same.  I never really know what to expect. The part that is the same is that I get up and go to the hospital, just like we got up and started walking. Each day there are amazing vistas and rugged challenging climbs.

Doug is now feeling frustrated that he cannot move on his ow.,  To me, it seems the very fact that he is frustrated is an improvement.  Tonight at 8:30  he said he worried about me and that he thought I should go home so that I do not get home too late.  He has not been able to think about me going home or driving on slick roads these past weeks. Often he was not aware I was there or he so needed me to be there that he did not want me to leave.. I believe his awareness  is a sign of his continued healing.

Many other good things have happened over the last few days.  He was able to eat a half a banana and a cup of pudding. This is so important.  He really needs to get the tube out of his nose.  It is very irritating to his nose and throat.  If he is not able to eat soon we will have to consider a tube directly into his stomach.  I am hopeful we won't have to do that. The OT and the PT, for the past 2 days have helped Doug to sit on the side of the bed. They have worked with him to build the strength to hold his head up and strengthen his core muscles, as well as putting his feet on the floor, strengthening his leg muscles. Today he did better than yesterday.  It is delightful to see progress, even though the steps are small. Today while stretching his legs in bed, he was able to help push his right leg out from a bent position. He was also able to push both arms out from a bent position.  Moment by moment, day by day he is healing.

The OT and PT working with Doug, sitting at
the side of the bed.

I have been limping around now for about 7 weeks. And so I decided that it is time for me to have surgery on my knee. I will have the meniscus repaired on Tuesday.  This is outpatient surgery and I should be walking in the afternoon. I understand the recovery is fairly quick.  I know that when Doug gets home he will need care, and so I decided I had better get this knee taken care of very soon.

With so much happening it s time to pray,

Holy One, Light Bearer, thank you for lighting our path on this journey. Thank you for giving us hope  with the daily bright spots in the many signs of healing. Thank you for sending light bearers for the path that encourage us  when we struggle or become frustrated. Thank you for the expertise of the professionals working with Doug and their positive attitudes.  They build our trust in the process and bring us joy with their playful banter. Thank you Holy One. Thank you Light Bearer, Thank you for your constant illuminating presence with us. Amen

January 18, 2017: Day +60

 

As more light is opening and awakening our days both figuratively and literally, I can more clearly see that which needs to be attended to.  For weeks my only focus was standing by and supporting Doug, and guarding his life. Now with the crisis at bay, like Doug looking around and seeing the nurses faces, I am looking around to see what next needs to be done.  There is now a little space to live outside of the narrow stream of light that is Doug's life.

My dear friends Ingrid Sitton and Sherry Barrett stepped forward and asked me if they could help to organize some friends to offer Doug companionship and care while I return to work.  They met and thought through all the considerations on what a person sitting with Doug would need to know.  These two wonderful women have been ministering to us since we first decided to get HSCT for Doug.  They were the main organizers of our fundraisers.  They have literally been the wind beneath our wings as we began this pilgrimage and now as we continue on the path.

Ingrid has agreed to be responsible for organizing people to be with Doug, so that I won't have to worry about the schedule and so that I can attend to work, Doug and my family. I have decided to go back to work on February 1, 2017.  I will only be working 19 hours a week. And so for now, I am thinking my schedule will be 8 to 4 on Mondays and Tuesdays and 8:30 to 11:30 on Wednesdays. Doug really does not need anyone with him before 9 or 9:30.  And so I  think that there will be two,  3 hour shifts on Monday and Tuesday and one shift on Wednesday morning.  That would mean that we need a total of 5 volunteers a week. We don't know how long Doug will be in the hospital or rehabilitation facility.  It all will depend on his recovery. 

You might ask, why does Doug need someone to be with him.  He said, "I would like some companionship."  I think this is important for him, to keep him company but also to support him in this journey of healing.  My hope is that someone would be there to scratch an itch, adjust his pillows or legs, call the nurse, and cheer him on.  The staff at Vibra are wonderful.  They do a very good job of caring for him, but they can't be there all the time.  When Doug gets movement back he won't need anyone with him all the time.  Regular visits from friends will be enjoyable for him.  So many of you have asked about what you could do.  This is something that would be so wonderful for both of us.

You don't need to know anything special to volunteer.  You are only there as a friend.  For his health, we have to be vigilant to keep germs away. It is important that all visitors are well and have not been around a person who is sick or feel like you might be getting sick. If you have been sick, it is best to wait a week before visiting. Sickness, could be catastrophic for Doug's health.  Right now he is healthy; just finishing the antibiotics from his pneumonia. We have to protect him from getting sick again. When going to visit you should leave your coat and purses in the bathroom, in his room (I put my things on the shower seat), as these clothes may carry germs. You need to wear clean clothes. Before entering the room you need to carefully sanitize your hands.  Hand shakes are fine if you have sanitized, but it is probably best not to hug. As a companion you are there as a friend. Doug is an extrovert and loves visiting with his friends. You don't have to provide care outside of helping him with an itch or a pillow re-position.  When the staff provide personal care please step outside the room. If he is tired he may need to nap. He tires very easily.  Please know that Doug is talking and very able to communicate his needs. You don't have to anticipate his needs. I will leave a log book for you to sign.  If you have considerations or concerns you may put them in the book and I will attend to them while I am there.  I will be there after work each day. 

If you feel like you can help out, instead of contacting me, would you please call Ingrid? She will let me know who is visiting and when.

Her home number is: 898-4776

Her cell number is: 867-8351

Providing love and companionship for Doug is the greatest gift you can offer us right now. I will be so thankful for your help.  With the skills of the Vibra staff and the love of his friends and family, I know he will do well. Together, we will weave the light of healing around him and cocoon him in our love. For now I think we should only schedule the month of February.  It is very hard to know when he will be well enough to leave there. One step at a time...  Bless you my friends!

And so we pray:

God of life and light, your warmth and brightness stretches and fills the night sky.  We are drawn to gaze upon you and to wonder.  Who are you; what do you call us to? Guide us as we seek you. Heal the parts of us that need healing. Fill us with hope and joy, knowing that your presence is always with us seen or unseen. And as Doug sleeps this night light his dreams with your presence. Comfort and protect him, help him to know he is never alone. In your name we ask it. Amen

January 17, 2017: Day +59

 

When reflecting on the Epiphany I think about the light coming into the world.  I think about sunrises, when night becomes morning.  I think about awakening. I think about transformation and change.  Tonight, writing the blog, I wanted an image of the Epiphany to reflect upon and what I found were single stars. You might say, "Well of course one star.  The wise men were following a single star." And I would say, yes, of course, a star...

I looked into the night sky, this night, and there were no bright stars and so I imagined, what would it be like to follow a star, a bright star.  A star is surrounded by darkness, you can only see stars at night, it is so easy to become lost.  Do you follow it night after night?  Do you still follow, when your friends, your families, your co-workers think you are foolish? Do you follow when you only have your inner compass, your own faith to mark this journey? Do you believe your companions who are with you, these fools who believe in this star and walk with you? Whom do you trust? Whom do you believe?

In this long journey with Doug, with Doug having MS and with all the recent frightening events that have left Doug without being able to move, we have had to keep our eye on the light. To lose the light is to loose life. That light, that sometimes burns brightly and sometimes very dimly holds our hope and our belief that darkness will soon turn to light.  A new day will be born.

I want to thank our friends and family who have walked with us, keeping the faith, nudging us on and reminding us of who and whose we are. We are so grateful for the help offered.  At Vibra, I am so thankful for the attitude of the staff and for their cheerfulness. Doug is so uncomfortable in bed, he cannot readjust himself as we all do, he has to ask others to do it for him. It is frustrating for him. I weary too, of pushing his glasses up, scratching his nose, his ankles, his legs for the umpteenth time. But tonight, I was so grateful, for the cheerful faces at the door, offering help, and offering support, holding the light, by believing in the vision of healing and a return to wholeness.

Today was a more difficult day for Doug. He was so tired and weary of this condition. He did not feel well. He did so much yesterday and he was tired today. And then our friends the Rev. Jennifer and John came by to visit. His mood brightened. He enjoyed the companionship and friendship and I most certainly did as well.

I needed to go over the to the school district to talk about when I would be returning to work and my contract.  During that time my sister came to stay with Doug.  Upon returning I was telling her about my concern with paying off the loan for Doug's treatment, the medical costs we will have and not working.  She so graciously offered to pay off the loan for his transplant and help in any way she can.  She shared her light with me this night and both of our lights grew brighter. Doug's favorite saying is that the best prayers have feet. She came running to answer my prayers this night.

So much has happened these past months, that all that we can do is follow that light, keeping faith, knowing that the one who created this world, is waiting, lighting the way and will lead us to transformation. We must trust in the slow work of God.

And so we pray:

God of light that transforms and transcends, be with us as we journey to healing.  Help us to trust the journey. When things dip, fall apart, tire us, graciously pick us up, restore us, and gather us together with others who are following the light so that our hope and our faith are sustained. God of light, watch over Doug this night, be his night-light, so that he might rest deeply in you.  And graciously be with me, sustain me as Doug and I walk this journey together.  In your name we ask it.  Amen

January 16, 2017: Day +58

Such a good day...

Funny what makes a good day.  For us, the littlest things makes for a good day.  I have learned not to look to far ahead, resting in the present moment gives us the comfort we need.

Today when I came into Doug's room he greeted me.  The aides were just leaving. Once they were out the door Doug said, "Today is the first time I noticed their faces and the first time I really looked at them." Up till now Doug's focus has been mostly internal.  He was unable to look outside of himself. He has been coping with so much just to live. For him to be able to look, see and interact with others for a period of time is another big step.

Then Doug said "Look, I can move my arm."  Sure enough, he moved his arm just a tiny bit.  This is the first time he has reported to me what he could do. Always before I have shown him his improvements.  He has seemed a little disengaged in the improvements.

Then our friend Steve Matthews, and his legal assistant Angie came to see us.  Steve most graciously drew up a Power of Attorney for us.  He needed Doug's signature. I thought hmmm, I am not sure that can happen.  Doug said he could do it. I was skeptical. Well, he did.  Not his normal signature, but he was able to form a pincer grasp, hold the pen and wrote a new rendition of his name.  He definitly could not have done that a couple days ago.  Then the final big event today was with his Speech and Language Pathologist.  He was evaluating Doug's swallow and decided to try the pudding again.  Doug did really well.  He ate the full cup with no problems.  Hooray! He really wanted steak and eggs, but pudding is a step in the right direction and so it looks like he is well on his way.

It was a busy day with so many improvements in one day. We pray each day continues in a similar way.

And today, I took a few more moments for myself.  My friend Melanie came and met me for dinner.  It was lovely to step a way for a short time. And tonight at 9:00, I went for a massage before bedtime. Hopefully I will sleep more easily tonight with so many good thing in one day.

Jesus, light of world, your light draws us and leads us. Like the dawn of a new day, this day filled us with hope and promise. We thank you for  continued healing of  Doug's body and rest for our bodies and souls.  Be with us as we sleep this night. Send your angels to keep watch over Doug, provide him rest and comfort, give his caregivers compassionate hearts to nurture him  and care for him.  And fill us again in the morning with a new dawn and the promise of a new day. In your name we ask it.  Amen.

January 15, 2017: Day +57

The Blessing of the Magi by Jan Richardson

Today Doug was even better than yesterday.  He is stabilizing his neck and shoulders. I can see the muscles move up into his arms as he tries to move his hands and the muscles in his calves as he tries to move his legs.They are awakening. He is more engaged and alert. He is moving with the light from the Epiphany.  For all this I say Amen!

My friend Kate Malone sent me this poem last week, written by Jan Richardson about Epiphany.  I have read it over and over. I have likened it to Doug's and my story.  Like the Magi we set off on a clear path, determined and resolute.  Our stay in Mexico and going through the HSCT treatment was a true gift, filled with the expectation of new life and hope. The road back has been much darker, with only enough light to take the next step.  Poet Jan Richardson says:

You will set out in fear

you will set out in dream

but you will set out

by that other road that lies in shadow and in dark

And indeed we have set out in fear, still holding onto the dream, but the road does indeed lay in shadow and dark.  It takes continuous prayer to constantly watch and feel assured by Doug's little bits of improvement. The doctors constantly have told me the road back will take months and it will be filled with peril.  I can only hope they are wrong.  They did not think that Doug would make it and he has, they did not know his spirit, or mine, or those walking with us. For indeed, the light that we thought we had left behind in Mexico, does indeed go with us, spilling out ahead of us to help us to take the next step on this path.

a POEM  from Jan Richardson

Blessing of the Magi

There is no reversing this road.

The path that bore you here

goes in one direction only,

every step drawing you down a way

by which you will not return.

You thought arrival was everything,

that your entire journey

ended with kneeling in the place

you had spent all to find.

When you laid down your gift,

release came with such ease,

your treasure tumbling from your hands

in awe and benediction.

Now the knowledge of your leaving

comes like a stone laid over your heart,

the familiar path closed

and not even the solace of a star to guide your way.

You will set out in fear

you will set out in dream

but you will set out

by that other road that lies in shadow and in dark

We cannot show you

the route that will take you home;

that way is yours

and will be found in the walking.

But we tell you

you will wonder

at how the light you thought

you had left behind goes with you,

spilling from your empty hands,

shimmering beneath your homeward feet,

illuminating the road with every step you take.

January 14, 2017: Day +56

It is Saturday, the middle of January and Doug's 4th day at Vibra.  I am so happy to report that nothing dramatic happened today. The staff were great and helpful.  Doug got to get into a wheelchair again.  His vitals are normal and he is responding to treatment.  The day was more restful.

It was only a week ago that Doug got pneumonia. It was a week ago that we were uncertain if he would make it through the night.  And then there were all the days prior to that, that each day we were on the fence if he could live through this.  Today, it was so nice to have a day that was just another day of staying the course.  I am so thankful.

 I came home late tonight around 11:00 because Doug was not very tired and he wanted to watch the news.  He was awake most of the day. This is substantially different; he has not been able to stay awake for too long most days.  And again, he was interested in watching some things on T.V.

Our friends Ludee and Ted dropped by.  We were both really happy to see them.  My sister Kate came over and spent the afternoon with Doug, so that I could have lunch with Ludee and Ted and go home to take a nap and catch up on a little rest. I felt comfortable leaving Doug, he was doing fine.

Always in the back of my mind is the progress Doug is making.  But reflecting on the day, I am thankful that Doug is talking, seeming more like his old self and responding to medications. Yet he has such a long way to go, We both continue to pray that he will get more movement back, so that he can return to his pre-hospitalization level. It makes my heart sad to see all the weight and muscle mass he has lost and to see him so helpless.  I have to keep myself focused on healing and progress. Some moments are easier than others.

And so we pray with Thanksgiving.

Holy, life giving God, help us to live deeply, resting and trusting in your goodness.  Help us to remember that your work in the world can sometimes seem like slow work to us.  Give us patience and the grace to have faith that you are at work even when we can't see your work.  We continue to pray for Doug's healing and the restoration of his body. We pray that he will be healthy, giving his body the time it needs to to heal.  We give you thanks for the help and witness of others who stand with us and remind us that you are close and doing better things for us than we can ask for or imagine.  In your name we ask it.  Amen

The poem below was shared with me by my friend Ludee.  It is beautiful and a good reminder of the slow work of God.

Above all, trust in the slow work of God. We are quite naturally impatient in everything to reach the end without delay. We should like to skip the intermediate stages. We are impatient of being on the way to something unknown, something new. And yet it is the law of all progress that it is made by passing through some stages of instability— and that it may take a very long time. And so I think it is with you; your ideas mature gradually—let them grow, let them shape themselves, without undue haste. Don’t try to force them on, as though you could be today what time (that is to say, grace and circumstances acting on your own good will) will make of you tomorrow. Only God could say what this new spirit gradually forming within you will be. Give Our Lord the benefit of believing that his hand is leading you, and accept the anxiety of feeling yourself in suspense and incomplete.  —Pierre Teilhard de Chardin, S.J., was a French philosopher and Jesuit priest who trained as a paleontologist and geologist and took part in the discovery of Peking Man. The prayer is excerpted from Hearts on Fire. e.