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