Tuesday, February 14, 2017

February 14, 2017: Day +87

It is the middle of February and it is Valentine's Day.  A day to celebrate love.  How much better does that get?  Granted we should celebrate love everyday, but like everything else, sometimes we need special reminders of what is important.

I went to work today, feeling much better than yesterday.  The fever left me yesterday afternoon and with some decongestant and cough suppressant I am doing pretty well. At noon, I got a call from Doug, wishing me a Happy Valentine's Day.  Pretty sweet considering he had to get someone to call me and hold the phone for him.  That is enough of a Valentine's present. Perfect. On the way home from work I stopped and picked up Doug a Valentine balloon and a box of chocolates.  I could not let the day go without a little remembrance.  I also bought chocolates and brownies for the Vibra staff for the care they have provided Doug with me not being there.  I stopped by the hospital, sanitized and put on my mask and took Doug the gifts.  I have not seen him since Friday.  He was really glad to see me.  I hope and pray my mask kept all my germs contained.  It was good to have a few minutes to enjoy  a little Valentine's celebration.

Upon entering Doug's room, I saw that he had Valentine cookies  and Valentine cards from friends who stayed with him today.  It was so sweet to know that Doug had been able to celebrate the day with others.  Thank you so much Jane, Jerry and Jan!

More good news, Doug was able to bring his right hand to his mouth.  Jerry said that he tried to pick up the cookie and eat it.  He is not quite there yet, but almost.  It won't be long.  He can now bring his left hand to his chest.  I was just thrilled.

Since I am still trying to recover, I am going to keep this short. I hope that all who read this blog, took some time to celebrate Valentine's Day.  Please know that Doug and I both wish all who follow our blog a very Happy and blessed Valentine's Day.

And so we pray;

God, source of all that is good; God, from whom all love comes; open our hearts, stretch our imaginations, and guard us from our fear so we may catch a glimpse of the power of your love. Teach us to rest in that love and be recreated in it.  And as we are filled, help us to carry that love to others.   In your name we ask it.  Amen.


Monday, February 13, 2017

February 13, 2017: Day +86

It is the eve before Valentine's Day.  Doug has been asking about Valentine's Day for over a week and wondering if we can have a dinner delivered.It is really very sweet.  Here he is, laying in a hospital bed, but wanting to do something to celebrate Valentine's Day.  It would be so easy to just ignore it this year.  In fact, he is not suppose to be eating out until Day +90 according to directions that many of us were given after transplant.  There are a variety of opinions about this.  According to the doctors we have right now he is OK to eat restaurant food if his blood counts are in the average range.  Honestly,  this does not seem like the riskiest thing for us to do right now, because being in a hospital with all that he has gone through seems much riskier.  Still, I have been very cautious.  If we can tip the scale of wellness in Doug's direction I certainly want to do that. With me being sick, I think we will celebrate with a nice dinner from a nice restaurant on Day +90 where I can give them special directions to assure his safety.  And hopefully on Day +90 I will be over my illness.

I stayed home again today.  I continued to run a fever through the night and could not sleep, waking often with coughing.  By this afternoon my temperature came down and I could finally sleep.  A number of times over the last few months I would really have liked to have had a couple of days off with nothing to do; but being sick was not how I imagined that working out.  It is not quite the same.  Still I am grateful to be home. I have not spent any real time here since last October, other than to sleep.  And it was nice to have Stryder here with me, constantly at my side. And thanks to Jerry, Ingrid and Penny, Doug was not alone. He is so thankful for this company.

This Camino has lots of twists and turns.  My friend Jodee left a funny comment on the blog today. She said I  being ill was like we stayed at a bad hostel on the journey. l will have to be careful not to stay there again!  She made me laugh.  Another woman Alli, who has been following the blog left a comment a few days ago. She said that she is recovering from HSCT for MS in Traverse City, Michigan her childhood home.  She is a friend of Jackie's, who had treatment with Doug in Mexico. Jackie had asked her to pray for Doug and I.  It turns out she is an Episcopalian, like us and grew up attending Grace Church in Traverse City.   Doug and I served at Grace Church in Nampa.  But there is another connection as well.  I had never heard of Traverse City, until Angie and I walked the Camino de Santiago a couple of years ago.  We spent the last week with a woman named Jill.  Our intention has been to get back together with Jill again and we have not made that happen yet.  We shared some important parts of our Camino, both of the heart and of the commitment to complete this Camino, with Jill.  Jill had two other friends she was walking with, and I have forgotten their names for now, but not them.  They had both recently retired, she from being a teacher and he, as a hospital chaplain.  During those last days we shared much from our hearts and lives.  We spoke of books we had read and where our life journeys' would now lead.

Now, on my fourth pilgrimage for healing, I find it ever  so interesting to be connected to Traverse City again.  I wrote a few quotes from my friends that I wanted to remember.  This one stands out for me. I believe it came from a book, but I don't have the authors name.

"Hope is a good thing. Maybe the best thing.  And no good thing ever dies."

This seems like a very good quote to ponder this night.  This night before Valentine's Day. I continue to hope in the healing power of love and in our God who is love. Look at the chance of meeting these fellow perigrinos from Traverse City who were seeking healing. Many say, there are no chances.

God of Possibilities, thank you for showing us what is possible that some might consider only chance. Thank you for bringing people into our lives to walk this journey with us and people who bring light to the path.  "Help us to remember that "Hope is a good thing.  Maybe the best thing. And no good thing ever dies." Amen


Sunday, February 12, 2017

February 12, 2017: Day +85

I have been home now for 2 days because of the cold or flu.  I am not sure which it is.  I have been running a fairly high temperature and coughing.  I have not coughed as much today, but now my chest and stomach muscles hurt from all  the coughing yesterday.  I talked to Doug today and told him that I felt even more compassion for him when he entered the hospital and they could not control his coughing, that went on for days.  He must have really hurt. He said the good part is that he does not remember it.  Now that is a blessing!

Speaking of blessings, my friend Ingrid called me around noon today and got after me for not calling her yesterday for her to arrange for people to be with Doug.  I guess I kept hoping this illness would just go away and I could wear a mask, gown up and go in.  Well,l that did not happen.  Being the sweet person Ingrid is, she immediately arranged for people to be with Doug today.  When I talked to Doug tonight he was so grateful for the visitors.  Saturday was an awfully long day for him.  So thank you so much Jan, Fr. David and Gina.  Your visits meant a lot to both of us.

I am still debating on whether to go to work tomorrow.  According to the Internet you are suppose to wait 24 hours after a fever.  I still have a fever tonight, so we will see how the night goes and what I feel like when I wake up in the morning.  I have not been this sick for a very long time and I am still praying that Doug does not get this.

While I have been laying in bed these last couple of days, when  I have not been sleeping, I have been reading a book written by the retired Bishop John Thornton.  Bishop John ordained Doug and I.  He is very special in our lives.  Just before leaving for Mexico he gave Doug a special blessing and gave us 3 of his books. The books are made-up of sermons that he has given.  He is a wonderful preacher and story teller. In his book "Good Seed and Zizania"  he wrote a  kind of poem  or maybe it is an admonishment in the first chapter. It is about Love.  In fact if you read his book you will find that many of his sermons are about Love.  Imagine that.  He has a way of teaching about the nature of God.  God is Love.

Over the last few months many people have mentioned the love Doug and I have for each other. Loving in the midst of challenging circumstances can be difficult.  I know this.  I know that my friends living in relationships where they themselves, their spouse, their parent or their child have M.S. may face significant struggles.  We struggle with disappoint, fear of the moment, fear of the future, confusing symptoms, fatigue, and frustration to name a few. But the question is how do we keep going, growing, perhaps even more fully develop? I suspect much of it comes from making the decision to love. To choose love. A few years ago I spent a full year reflecting on live, love, laugh.  I divided the year in thirds.  I spent 4 months reading and meditating on first living deeply, then loving bolding and finally laughing often. The practises that I adopted during that year have helped me during the more challenging days.

But back to Bishop John, this is what he wrote.

Love is the way.
Go that way!
Never go any other way!
Go that way even if no one else goes that way.
Never turn back.
Go, go, go, Christ-ward!
And don't be afraid.

Love is the way.  Some of love is chemistry and more of it is choice.  For me though, when I love deeply, I find God at the deepest, most lovely center. Each day I know, that love will or can find a way if I allow it.  And sometimes it is just Grace.  God breaks through.

God of Love, God of Laughter, God who lives in each of us:
Thank you for the outpouring of love we find in the simple gestures of kindness.  Thank you friendships, for strangers and for those who pass through our lives.  Thank you for our teachers of the Way.  Help us to not be afraid to love boldly, expecting nothing in return.  Help us to live deeply, enjoying every moment of our lives.  Help us to find joy and laughter in small things.  Help us to not be afraid. And so here we are opening ourselves and trusting in your goodness all the days of our lives. Amen

Saturday, February 11, 2017

February 11, 2017: Day +84

Unfortunately I definitely have a cold.  I woke early running a fever, runny nose and coughing.  I have stayed home hoping to get over this quickly and praying I did not expose Doug to it.  I really have not felt well enough to go anywhere.  This hit me pretty hard pretty quickly.  I have spent the entire day in bed, with my faithful Stryder right next to me.

I was able to talk to Doug a couple of times at Vibra.  He of course was disappointed that I was not coming and that I would not be able to come tomorrow either.  He was worried about me too and wanted to make sure that I take care of myself. I talked to the aide Ben and he helped Doug with the phone.  He told me that he was assigned to Doug today and tomorrow and he would take good care of him.  He was so sweet, he knew I was worried about not being there.

This morning they took a new urine sample from Doug which also meant that they had to take out and put in a new catheter. This is a painful procedure and I was concerned for Doug.  He said it was not pleasant but he got through it okay.  They took more blood today.  They are testing for a yeast infection.  The good news is that Doug is not really symptomatic yet and so if it is still present they should be able to treat him before he experiences more problems.

Angie and Tom are in Cascade this weekend with the kids, enjoying a ski weekend. And so they can't stay with Doug.  My sister Kate is home too with a cold.  She has been sick all week.  I don't know if I picked my cold up from her or somewhere else.  There is so much going around.  I am really careful, but without being in isolation it is tough to guard against getting sick.  I will redouble my efforts.  

And so we pray:

Gracious and life giving God, thank you for the kindness of caregivers like Ben. We thank you for seasonable weather and sunshine. We thank you for the kindness of friends. We know that life can be difficult for many.  Be with all who suffer.  Give them hope in their troubles and peace in their hearts.  And we pray for healing and wholeness asking that Doug's tests will come back negative and that I get over this cold quickly, praying especially that Doug does not get this cold. In your name we ask it. Amen

Friday, February 10, 2017

February 10, 2017: Day +83


Doug asked me to bring Stryder again.  I picked him up at my sister's, then went to get a latte and a blueberry scone for Doug.  This is about his favorite breakfast.  Little things like this brighten his day.  He was so glad when I walked in the door with our dog and his special treats.

The occupational therapist worked with him through lunch time. He was looking for ways to strengthen Doug's arms and hands so that Doug can feed himself.  We tried several different things and I will continue to work with Doug throughout the weekend.  Doug got very tired near the end and was ready to rest.

Angie came over and had lunch with us.  She finished her jury duty yesterday.  It was a tough case and she was given the role as the lead juror.  She said it was a good experience, but difficult.  When you are making decisions about people's lives you really want to get it right.  She found she shifted her position as she listened to everyone and felt like the group decision was really a good decision. She and Tom took in a new 4 year old foster son this week.  She has been very busy and this will keep them all a little busier.

This afternoon they had "active shooter" drill at the hospital. The Meridian Police Department, partnered with Vibra to practice their response and improve their practises.  It was quite the buzz in the hospital.  As it turned out we were not impacted at all. The main doors to the hallways closed.  We could not get out and no one could get in.  So it was pretty uneventful for us.  I don't know how it turned out, but the lead-up to it was pretty exciting.

After the drill we were able to get Doug into a regular wheelchair and go for a walk with Stryder outside.  I am so glad my knee is doing well enough to take him out.  Doug has not been outside since December 8.  It was so nice for him to get some fresh air.  We took a walk around the building.  All three of us, enjoyed being able to participate in this very normal activity. Poor Stryder has had hardly any walks with all the snow and ice.  It was wonderful for him to get out and smell things.

I am not sure who enjoys having Stryder at the hospital the most. Certainly Doug and I like it, but so do all the nurses and many of the patients.  The patient across the hall asked if he could come and see her.  She loved being able to touch him. There are a couple of other patients on the other hall that call out to me when I walk by.  They too want to see Stryder.  Stryder is a sweet old guy.  He is 13 years old.  We are grateful for everyday we have him.  He is just happy to be with us. Happy to lay on his dog bed and sleep or eat and enjoys the pets of all the staff who come in and out.

Doug's energy was really low this afternoon and yesterday too.  I am a little concerned.  No new skills in the last couple of days.  We learned just before I left tonigh that they had found some yeast in a urine sample a couple of days ago.  They are going to change his catheter and do another sample in the morning.  Poor Doug is not happy about that. But we also don't want anything to get started. With his compromised immune system we need to be careful.

Then this evening my throat started getting scratchy.  Now I am worried I might be getting something, and hope I have not given anything to Doug without knowing it.  We will have to see what the morning brings. I am hoping it is nothing, but at this moment it feels like I might be getting a cold.

Please pray for healing for Doug and for me.  He really does not need a cold!

God of Mercy, we give thanks for all who work on your behalf, especially jurors who give their time to interpret the law and make just decisions.  Thank you for police officers, who work under difficult conditions and yet continue to be better prepared  to help our communities to be safe.   We give you thanks and praise for our pets; for the love and friendship they provide.  Lord, Doug has been through so much.  Mercifully grant him a good night sleep so that he will wake restored and well; protect him from catching any viruses or bacterial infections.  And Lord, we pray that you will take this cold from me so that I might keep Doug safe and well.  In your name we ask it.  Eileen

Thursday, February 9, 2017

February 9, 2017: Day +82

Today Doug had the opportunity to participate in Group Therapy again.  This time he went  much more willingly than the last time.  The good news is that he was able to do more independently this week.  He is moving his arms and legs somewhat. Since I knew he would be busy with his therapies this morning, I took the opportunity to get some laundry done, change my sheets, pick-up things I had been laying on the dining room table each day and pay bills.  Not an exciting morning, but it was nice to have some time to do a few things around the house.  I also took the time to get the oil changed in our car and pick-up Doug's medical records from St. Al's.  Before Doug left St. Al's, I requested his records.  It took them several days to get them ready and today was the first day I had the time to go by and pick them up. He had a lot of records.  In fact, 900 pages of records that measured about 6 inches thick. I had no idea there were that many.

He was pretty tired this afternoon.  Therapy took a lot out of him and so this afternoon he spent most of the time resting.  Every other day, I have seen some improvement in him, but today he seemed about the same. The nurse practitioner said that Doug was a little discouraged from the slowness of his progress and the great effort it takes for him to move.  She said that she had given him a pep talk, reminding him that only a month ago he was hardly moving at  all.  The physical therapists are telling him the same thing.  I can't imagine how I would be if I had gone through what he has.  I think it is okay for him to feel discouragement sometimes.  We all have up days and down days.  I am impressed with how he has held up so far.

I slipped away for a break with two of my friends from work, Ludee and Kelly.  They both have been so supportive over the past months. I am so grateful for their friendships.  It was fun to have a glass of wine and to have some time away to just relax and talk education. Both of these beautiful women gave me flowers to welcome me back to work. These flowers are brightening my day and give me hope for spring!

Today felt like spring.  The snow is finally melting.  A friend posted some daffodils that are coming up through the snow.  Life finds a way.  And so we pray

God of Mystery, these past months we have been cocooned in the protection of the hospitals. All of Doug's needs have been cared for by others.  We give thanks for the continuous care of the hospital staff as documented in the huge stack of medical records.  We give You thanks for the time to catch-up on life and for the time to be with friends.  And we give You thanks for flowers; for they  remind us of the beauty of this world and the hope of new life.  Amen






Wednesday, February 8, 2017

February 8, 2017: Day +81

Our nurse stopped by and visited with us for a bit before going off shift tonight. He was in technology until the bottom fell out during the technology boom in the early 2000's.  He had a very successful career and then ended up having to mow lawns and do landscaping.  Oddly though, he lost weight and was in the best condition of his life.  Being physically fit, he felt good and found himself happy after what seemed like the lowest point in his life. He had just turned 50.   He then went back to school and decided to become a nurse.  He is finishing his working career helping people, not for the money, but because it is meaningful work.

I talked with the transition coordinator today.  She said she is leaving town tomorrow to go to Seattle. She has a medical condition and needs to see a specialist.  That means that Doug won't transfer now until next week.  She has not heard from St. Lukes yet to know if he will be accepted.  She too is a woman who has had to start over in her life too.  When she found her job at Vibra it was a new begining for her.  She loves helping people. She feels like she is making a difference. She has worked at Vibra only a few months, but they have been very supportive of her in her most recent illnessgiving her the time she needs to heal,

These last few days I have been in contact with some of the people we were in Mexico with.  We are quickly approaching 3 months since the stem cell transplant.  Everyone we were with in Mexico, had come to a place in their life with MS that they were willing to step out and get treatment in the hope of finding new life, new beginnings. For some it was the only hope to stop the disease.  For others, they wanted to stop it before it could do any damage.The diagnosis  of MS forced a change in their life and in the lives of those who love them.

Our transition coordinator, said to me tonight, we all want control of our lives, but life takes us places that we don't ask for and then we have to change.  We may resist, but eventually we have to meet life where it takes us.  These last 3 months have been a journey I would never have chosen.  Of course we would never have chosen a life with MS.  It is difficult to live with, it changes your path in life.  But here we are. Day upon day in the hospital, even with progress, even with caring people it is tiring. This afternoon, I was sitting in the chair next to Doug while he was sleeping I fell asleep.  I never fall asleep in a chair.  I think some of the constant vigilance of the last few months caught up with me.

Our whole life for several years has been constantly adapting to the changes in Doug's health.  Then these last two months have brought big changes. Work for me changed.  First not working and then upon returning to work my hours and programs have been changed.  And so we wait, waiting in the hope that life will turn and these changes will bring new life in new ways.  We pray that these new ways will be more than we can hope for or imagine.  My friend Cory sent me a text today saying she believes the new powerful stem cells, along with prayers and positive thoughts are giving Doug strength and healing. I thing that is true too

And so this night I am praying for all of our friends who went through stem cell transplant.  I pray they are finding new life and that their new stem cells are building a new immune system that is healthy and restorative.  I also pray for all who are going through change that they may find God in the midst of the change and have faith that new life is beginning.  That they will have faith that something new is begun and believe all will be well.  And I pray that Doug and I will find rest in the changes and chances of this life.  That we will see days getting brighter even though the clouds are present.  And I pray that all who are challenged by this life will reach out and find strength in others and in God. And finally, we give thanks for the people who came along, shared their stories and offered hope. And today we give thanks to Heide, who shared her light, spending the morning with Doug.  Amen