May 14, 2018: Day 568

It has been 195 days since my last post.  It was not intentional to wait so long to write again, it is just that life has been so busy and the last year was too full, too emotional, too up and down.  I needed to take a break from counting the days after all Doug went through getting a kidney stone, sepsis, and two surgerys.  He made it through and that is something to celebrate with his depressed immune  system, but not without taking it's toll.  He ended up back on Home Health until the end of January.  He had lost a lot of ground physically.  And then he went through a bout of diarrhea for a couple months.  That was finally fixed by simply taking fiber and prebiotics.

Now here we are today, day 568.  Today Doug is receiving his last chemotherapy.  We are both excited to have this be the last day.  I worried so much about getting this set-up; fearful we would have to return to Mexico for the treatment.  And then suddenly it all came together, with minimal costs, only our co-pay, which seems like nothing at this stage of the game.  Doug always feels a little nervous before these treatments.  They often have a difficult time finding a vein. Today was no different. First they took labs and while having a difficult time finding a vein the technician was able to get a vein the first stab. Then with the I.V. they had to get the most experienced nurse and they were able to get a vein, after heating up his arm with the heating pad and putting the needle on the ourside of his left arm. Difficult, but the last I.V. was started.

Some good news today is that Doug's blood work continues to be good.  His white and red blood cell counts are great.  His iron, potassium and magnesium have been low in the past, but with supplements everything was good today.

Next week, Doug will be evaluated for outpatient physical therapy.  It is hard for Doug to be motivated to exercise and practice walking on his own at home and I get tired of nagging.  We asked his primary care doctor last week if she thought outpatient therapy would be a good idea and she completely agreed.  I don't really want to start the whole process of getting him to therapies a few days a week, but I think it will be really good for him.

After having HSCT (bone marrow transplant), usually you have to be reimmunized.  We had not started this process with Doug since he had been so sick for so long, we did not want to add anything else to his system.  But last week at his doctor's appointment we restarted his immunizations.  He got a little cold, his first in a couple of years. We think it might have been related to the immunizations, but who knows.  The good news is that the cold was not severe and he has recovered without any other complications.

So where are we?  Did the HSCT work?  Was it worth it?  These are difficult questions to answer.  It has been a difficult 18 months.  Doug has been through a lot and it is hard to see someone you love go through so much.  We have both had to cope with this disease in diffent ways.  But from what we can tell, with Doug getting so much worse after the complications he developed with poly-neuropathy that lead to be paralyzed, and then still recovering to where he is now, we don't think that he has progressed with his MS. The next year will be more telling.  Doug never had a reprieve in the progression of his MS. Every year he was worse.  We can only pray now, that the treatment worked and he will not progress.

Having gone through all this has taught me something.  We can cope with the loss of all movement.  We have made it through this journey so far.  End stage MS can be very ugly.  Not knowing what comes next, we just continue on this pilgrimage. Every day we keep trying to make the right decision and take the next right step.  We both get weary and tired, but so far have not been overwhelmed by the journey.  We continue on, thankful for what we have and hopeful that Doug has been given the time to enjoy more of what life has to offer.

And so we pray:

God of Hope and Life, you have been with us on this journey, you have sustained us with courage, hope and strength.  The days so often have been uncertain but you have comforted us in our fear and lighted our path.  Be with us now as we step into the next stage of our journey.  We continue to pray for healing and strength for Doug.  We pray that his vision for wellness will be sustained and that he will persevere in this arduous journey. And Lord sustain me as I care for Doug. Amen

November 26, 2017: Day 373

We are finishing our Thanksgiving vacation. It has been a busy week.  Much was accomplished. Of course the most important thing was Doug having surgery to remove his kidney stone. Today is his last day for antibiotics. His physical therapist came on Friday and has cleared Doug to use the walker around the house and the wheelchair when we go out.  It is such a blessing to see him stronger again and to see him walking.

I am back at work tomorrow and Doug has a Retuxin infusion in the morning.  We also get to remove the stent tomorrow.  Thursday he has a follow-up appointment with his urologist and then hopefully we can put this kidney stone behind us.

Doug has done amazingly well.  He has had no pain since the surgery.  He has felt good and had more energy then he has had for some time.  Last night after the BSU game, Doug and I went out and did a little Christmas shopping and then went to dinner.  He has not had enough energy in the evenings to do that in years. Then today we had a full day with church and the family all over to celebrate Thanksgiving together.  Angie and 2 of her kids had gone up to Montana to see my niece and her family. Tom went to be with his family with one of the kids. And so our opportunity to celebrate with each other had been delayed.  It was nice to have everyone gathered under one roof tonight.

We have much to be grateful for.

God of Blessing, thank you for the many gifts we have been given over the past month and years.  Thank you for the restoration of Doug's health.  Thank you for a wonderful physical therapist who has held the vision of Doug walking again and helped him get to this point.  Thank you for the gift of children and the delight they bring to us.  Thank you for family and friends who share life's journey with us. With so many blessings, and so much hope, we rest and look forward to the new day.  Amen

Thankful for Trixie and the love and joy she brings to our lives

November 22, 2017: Day 369

It happened! Doug had his kidney stone removed this afternoon at St. Alphonse's in Boise.  Every thing went like clock-work.  His doctor came in to meet with us before the surgery.  I thanked him for coming to the hospital for the surgery instead of the out-patient surgery center.  I said that I knew that I had been really pushy in getting the surgery done today.  He said he totally agreed with me.  He did not think that Doug had needed to see a cardiologist.  He said Doug had been through a stress test 5 weeks ago when he went thought the first surgery!  I was relieved that he was supportive of me pushing to get the surgery done today.  You don't want a surgeon that doesn't want to be there!

The surgery itself only took about 45 minutes.  Dr. Fredrickkson broke up the stone and extracted it.  He put in a new stent in that we will remove at home on Monday.  After the surgery he came to meet with me to tell me how well everything had gone.  He said that we could call anytime if we have questions or if we don't feel like we are being heard.  I told him that the surgery center staff did not offer the hospital until I demanded to talk to him.  And they also told me that he was not available to talk to patients, he was busy.  He said, I am not that busy.

We got home around 7:00 tonight.  Doug has not had any pain.  He has had some discomfort.  But he is not taking any pain medication and he is doing pretty well.  He was able to eat dinner tonight when we got home and is looking forward to having Thanksgiving dinner.  I am so relieved that everything worked out and so glad to have this behind us.

Tonight I made the dinner rolls, prepared a sweet potato casserole, boiled the potatoes and put some rolls together for breakfast.  I am so glad we will be able to celebrate Thanksgiving. We missed it last year.

Thanks to everyone who encouraged us today.  Thanks to everyone who have held us in prayer as we continue this journey.  Prayers were answered today.


And so we pray:

God of Promise, we give you thanks answered prayers, faithful friends and for warm, caring and talented doctors and nurses.  We give thanks for a success surgery.  And we are thankful that Doug does not have any pain and the relief he is feeling knowing that this part of our journey is coming to an end. Be with us this night that we may rest in peace and wake in the morning filled with thanksgiving and hope.  Amen.

November 21, 2017: Day 368

The journey of trying to cope with the Medical system continued on today.  Yesterday while we were attending a funeral Doug left his phone at home.  Apparently he received a call with a message that he did not listen to until this morning.  The surgery center called to cancel his surgery that is scheduled for tomorrow morning.  It has been 5 weeks since the surgery to place the stent for his kidney stone.  We have been waiting for this surgery.  Doug has not felt good.  He had to be on IV antibiotic for 2 weeks and has to be on ora; antibiotics until the stone is removed.  We have to drive to Boise to go to this doctor.  Last week we were required to go to his primary care doctor since he had been in the hospital even though he is also getting Home Health.    I told her how annoyed I was that doctors keep saying he has heart failure because of the heart attack he had last Christmas when his body was in such distress. She made a copy of the echo cardiogram done last spring showing his heart to be normal, with no damage. This way I could show people that his heart is fine.  I needed that report today, unfortunately no one was interested in seeing it..

Last Tuesday a couple hours before we were suppose to go to Doug's pre-op appointment, they called to say we did not need to come, they had all the information they needed.  We were surprised, but glad to hear that.  We had two other medical appointments last week and so it was good news to not have another one.

So, when the doctor's office called and said his surgery was cancelled for Wednesday, because he needed to see a cardiologist I was furious.  I called them at 10:30 this morning hoping to set the record straight and make sure he could be operated on in the morning.  They did not bother to call me back until 2:30 even though I explained the problem and said it was urgent. 

In the meantime, I had to take Doug for a blood test to check for infection from the sepsis.  This was just another follow-up.  The last test was negative.  While at Saltzer I dropped by his doctor to see if she could call the urologist and explain the test.  Certainly nothing had changed since his surgery last month and they had done another EEG then.  Her nurse came out, I explained the situation and she said she would let me know, but there was probably nothing they could do.

When we got home and the Surgery Center nurse called, she preceded to treat me as if I had no idea what was going on and that this was in the best interest of Doug.  I said if they are worried about being liable they should be more worried about me holding them accountable if Doug has to wait another month and the infection comes back or if  he becomes resistant to the antibiotics because of him being on them so continuously this year.  I was really frustrated.  The other thing is that I worked hard to set-up a time that I would not miss more work and relinquished being with our family for the holidays again since Doug needed the surgery.  The woman on the phone had no idea about Doug's real medical story over the last year.  They only saw the words "heart failure" that someone put in his chart and which no one can take out of his chart apparently.

Anyhow after hours of me being demanding and pushy, they decided that they could do surgery in the afternoon at a hospital instead of the outpatient clinic.  And so Doug will have surgery at 3:00 tomorrow at St. Alphonse's in Boise.

So much for a vacation day, and time with my grandson.  I spent another day, navigating health care.  I so want this time to end.  Unfortunately, it won't be any time soon.  Doug has chemo on Monday morning to receive the Retuxin and a follow-up appointment on Thursday.  Then what....I don't even want to guess....

And so we pray:

God of Challenge, this hill is too steep, it is too trying and too long.  We are tired.  We pray that you will clear the path, even it out and show us the way to health. Give us time for rest and respite so that we might be encouraged. Strengthen our resolve and sustain our hope.  In your name we ask it.  Amen

November 19, 2017: Day 366

Today is Doug's one year stem cell birthday.  It is so hard to believe that it has been one year.  We have so many fond memories of the other patients, caregivers, staff, nurses and doctors. Our time in Mexico was very special and hopeful for all of us.

And it has been quite a year, more difficult then we would have ever imagined.  While we knew that recovery from a stem cell transplant might be difficult we had no idea our year would turn out the way it did.  We don't know of anyone who has gone through anything like Doug has gone through.  We don't even know if what he went through was directly related to the transplant.  We had no clear diagnosis.  We do know he went into acute respiratory distress, that resulted in being put on a ventilator, with multiple organ failure and finally paralyzed from poly-neuropathy which has taken him months to recover from.

Finally feeling better and moving again, almost back to his pre-stem cell transplant level, he was brought low with the kidney stone, kidney infection and sepsis.  He was operated on, a stent was put in and we have waited for the stone to pass and for Doug to recover from sepsis.  He is finally feeling better and after a month again with physical therapy and home health along with continuous antibiotics, he is now ready for surgery on Wednesday to remove the stone.

We pray that his recovery from the removal of the stone will be faster and easier than the previous infection and discomfort from the stone.  We are ready for healing.

The good news, we can say at the end of this first year, is that we don't really see progression of the MS.  Of course it is difficult to know, with trying to recover from the paralysis and now sepsis, but the decline that Doug was continuously experiencing previously looked different.  He seems less fatigued.  He is not dragging his left side the way he was.

Perhaps, for us, the next year will be the year we learn if the transplant was successful.  The pilgrimage that was going to be a month long, has now turned into a year's journey.  Indeed this pilgrimage to healing and wholeness has become a life journey.  The pilgrimage continues.

God of Wonder, we wonder now what the months and years to come will bring. We wonder how our many friends are doing who have have been through HSCT for MS.  We wonder if the progression of the MS has been stopped.  We wonder.  We are filled with thanksgiving at this holiday time, for all the people who have blessed us along the way.  We give thanks for all the gifts of time and money that have brought us to this day.  We give thanks for the gift of life and the opportunity to continue this journey, not knowing where it will lead, but trusting in your goodness each step of the way.  Amen

November 9, 2017: Day 354

I am behind on updates.  These last few weeks have been very busy. The kidney stone has taken a tole on Doug.  He is not having pain anymore however he just does not feel well.  His energy is limited.  This week we went back to the infectious disease doctor in Boise.  The good news is that the infection is no longer in his blood stream.  They removed the PICC line yesterday.  I no longer have to give him the antibiotic IV.  He is now on an oral antibiotic and will be until after the stone is removed.  Doug went back to the urologist last week.  He is scheduled for surgery to remove the stone on November 22, the day before Thanksgiving.  This will be an outpatient surgery.  Doug is very happy about that.  Hopefully he will be feeling well enough to enjoy Thanksgiving.

Since the kidney stone attack, the surgery, and sepsis, Doug has lost ground physically.  He has been getting physical therapy 2 days a week at home.  He tires easy and is weaker than before the attack.  I suppose the sepsis, is what has had the most impact on his health. And the stone still in there, continues to cause infection.

Today Doug had a neuropsychological evaluation at The Elks.  This was scheduled last spring at the time of his discharge.  I am not sure with Doug's recent illness that the results will be the most accurate.  Monday we had to go to Boise for an interview before the testing.   There have been changes in Doug's cognition with the MS.  For years I tried to talk to his neurologist and others about it.  But now, with all that happened to Doug last year, the doctors at the rehabilitation hospital thought it was important to do an assessment.  I don't really expect that we will learn any helpful information.  I think the testing was hard on Doug and discouraging.  He use to give these assessments.  Now his thinking and memory are slower.  It is frustrating for him.  When I picked him up he was a little down.

My sister took care of Trixie today, she hates being left alone.  And so Doug and I took advantage of having a dog sitter.  We went out for an early dinner/late lunch.  We celebrated having the testing over and looking forward to the surgery, so that the stone will be behind us.

We have been climbing a lot of hills or mountains lately.  Last week we had the opportunity, to see the documentary "I'll Push You".  It is the story of two friends, one who pushed the other for the entire 500 mile pilgrimage of the Camino de Santiago.  It was fabulous.  Patrick and Justin did the Camino 2 months before Angie and I walked it.  I joked with Doug then, "I won't push you".  The documentary was heartening on many levels.  It was a reminder of how important it is to have friends and acquaintances along the way, who are willing to jump in and help and support us.  As we are coming close to the 1 year mark since Doug received his new stem cells, we are reminded of all who have helped us along the way, and we are grateful.

At the documentary "I'll Push You" with Justin and Patrick

And so we pray:  God of the Camino, the path of life, often unpredictable, sometimes rocky, with places that are steep, offering new vistas, and places of desert, with long straight roads,  you are with us and you give us rest.  Be with us now with the challenge of Doug's recent illness.  Heal his body and give him strength.  Fill us with continued hope as we look forward to his 1 year birthday.  In your name we ask it.  Amen

October 31, 2017: Day 347

This afternoon Doug had his appointment with his urologist.  We have looked forward to this appointment so that we can find out what Doug's next steps will be.  We were not surprised by the news.  Doug will need another surgery to remove the stone.  The doctor did not take it out with the initial surgery for the placement of the stent because there was too much infection in the kidney.  In the next day or two the person who schedules surgeries will call us and set-up a time to have it removed. At the time of removing the stone, the doctor will use a laser to break-up the stone and then remove the pieces.  A few days after the surgery Doug will remove the stent by pulling it out by a sting.   Doug is like "What???".  I am like "WOW!".  The good news is that Doug is feeling better, he is walking some again with his PT and soon the stone will be gone.  Yea!

Angie my daughter, the organizer of the evening

We finished the night with trick or treating.  I feel blessed to be able to do this with our grand kids in Idaho.  Trixie did really well going door to door until she saw a cat and almost took my arm off!  The kids had so much fun going door to door and getting candy. Seeing our little foster grandsons so happy and doing so well tugs at my heart.  I don't know what the future holds for them, but I do know they are loved in this moment, in this place.  They make my heart happy.

Costumes are off and the sorting of the candy has begun

And so we pray:  

On this Halloween, darkness surrounds us, but light is everywhere.  There are offerings of love and care at each house.  Exchanges of good wishes and treats are served.  This is why I love Halloween.  All you have to do is show up and neighbors care for neighbors.  People laugh and play together. Thank you God for the small gifts we receive from our neighbors who lighten our load, and lighten our hearts.  And thank you for good doctors who care deeply, who make the journey accomplishable.  Thank you for grandsons and granddaughters, and foster grandsons, who give light to our days. Thank you for the family of God, living and dead.  Amen

October 30, 2017: Day 346

The weekend brought some ups and downs.  Doug continued to not feel very well, but getting a little stronger each day.  I took over giving Doug his antibiotics in his PICC line on Saturday. The first time by myself was a little stressful, but by today I felt much more comfortable. Doug's blood pressure has remained very low, hovering around 105/70.  I decided not to give him his blood pressure pills and just monitor him to see if it stayed low. It has been low but still in a safe zone.  His foot is still red and swollen, but the ultra-sound showed no clot.  So I guess we are ok.

The best part of the weekend is that we had the opportunity to listen and learn from the Most Rev. Michael Curry, Presiding Bishop of the Episcopal Church, USA.  He was inspiring, a joy to learn from and very approachable.  Doug was able to attend on Sunday morning and had the opportunity to listen to him preach on loving our neighbors as ourselves.  Doug very much enjoyed the service and also seeing friends from across the diocese.

Doug and I with Prsiding Bishop Michael Curry

The Presiding Bishop said many intriguing and profound things.  One thought he shared was "The opposite of love is not hate, it is selfishness". That is something I will think about for a while, but it makes a lot sense to me. Another thing he said, that should be obvious, but it often gets lost among Christians is: “If it doesn’t look like love, if it doesn’t look like Jesus, it isn’t Christianity. Period. Exclamation point. Amen. Hallelujah.”-@PB_Curry.  It was great to hear a great preacher/speaker/teacher and to learn.

We celebrated my grandson Cole's 10th birthday this weekend.  He is such a wonderful sweet boy.  It is hard to believe 10 years ago he was born.  He decided he only wanted a family birthday party this year. His favorite gift did not change from last year, he still wanted more Lego's.

Cole is 10 years old.

Tomorrow Doug goes to the urologist.  We will learn more about what is happening with the kidney stone.  We are anxious to hear about what the doctor will suggest.  Doug will also get another week's supply of antibiotic in the mail tomorrow to receive through his PICC line.

And so we pray:

God of Hope, we give thanks for the light that comes into our lives when things seem dark.  It has been a tough couple of weeks with Doug's kidney stone, infection and other health issues.  It feels like we stepped back in his progress. But in the middle of discouragement from loosing ground, we have been given hope.  Hope in words of inspiration from Preseidng Bishop Curry and hope in the light that shines in Cole's eyes and in his heart.  For this we give you thanks and praise.  Amen

October 27, 2017: Day 343

Today was uphill all day long, one challenging step after the next. The big challenge is that we thought it would be a fairly easy day.  Days that you think are going to be easy are always harder when the expectations for the day don't match the reality.

We started the morning preparing for Doug's nurse to come to train me to give him his IV antibiotics.  I thought that would be the most challenging part of the day, but no.  With Jared's help he had me trained in about 30 minutes. Now, I hope I am ready for tomorrow, a weekend, on my own.

Doug's blood pressure was very low yesterday.  We thought it was because he was not drinking enough fluids.  Jared was concerned again this morning when it was only 100/60.  We developed a plan to monitor it throughout the day and determined when I would need to take Doug to the emergency if it dropped.

Then I told Jared that I was concerned about Doug's left foot.  It was reddish/purple.  He checked it and he was very concerned too.  It looks just like when Doug first had the blood clot. We decided that I would call Doug's hematologist and ask for direction.  Doug has been off the blood thinner for 10 days now, since his surgery.

Jared changed Doug's dressing around the PICC line.  That all went well.  Pretty well I guess, Trixie was a little more help then either one of them wanted. After the PICC line we rechecked Doug's blood pressure and it had come up a little bit to 103/75.  We decided I would just monitor it.

What we thought would be a 30 minute visit turned into a two and a half hour visit.  Before we knew it, it was 12:15. Doug really wanted to meet the Presiding Bishop and hear what he had to say.  And so we decided we would try to go.  It is a lot of work for Doug to get dressed, especially in clericals but we finally had him ready.   We also had to get Trixie ready for us to leave.  I gave her the medication the vet prescribed, but she was highly distressed.  Apparently it is worse having Doug and I both leave at the same time. Finally we were on our way by 1:20.

While driving, I was talking to the hematologist's nurse. The doctor wanted Doug to get an ultra sound today.  I told them, that Doug really wanted these two hours to meet the Presiding Bishop.  Could we schedule it after 4:00 or first thing in the morning?  After 25 minutes of phone calls back and forth while driving, the answer was no, the only time available was 3:45 in Nampa. We said okay, we would go to hear the Presiding Bishop for the first hour.

We got to Boise, to the BSU campus, at the historic little white Episcopal church, and found out that it was not accessible and Doug could not go in.  Having been a disabilities advocate for 35 years, to find out that a venue had been selected for this important meeting that we could not attend left us both very upset and disappointed. The Presiding Bishop came out and met us, but we wanted to hear him, participate and interact with him. Poor Doug, he was tired and had worked so hard to get there.

We left, drove back to Nampa, checked on Trixie and went to the hospital for the testing.  The good news at the end of the day, is that we found that Doug does not have a clot.  We are grateful.  I think we are both reaching our capacity for bad news. 

We don't know for sure why Doug's foot is turning purple.  Probably it is poor circulation since he is too tired and weak to stand. And there may be some small damage to the vein from the previous clot.  The stone still has not passed and he does not feel well.  His blood pressure tonight was 115/73 thankfully.   We picked up Chinese food on the way home.  I had a glass of wine, turned on the TV and rested.  I was going to go back into Boise for Evensong tonight, but after the day I just did not have it in me.

And so we pray:

God of Righteousness and Power, be with us in Doug's illness. Help us to persevere and find solutions we need for Doug to continue to heal.  Having a disability is a struggle even in the 21st Century.  Help us to shine a light where change is needed and dispel all feelings of hurt and resentment when confronted with our own disappointment. Empower us to be the change that is needed in this world as we continue to seek equality for all people.  In your name we ask it. Amen

October 26, 2017: Day 342

Doug is showing improvement slowly. Each day he gets a little stronger.  He has had Home Health all week for the nurse to give him antibiotics and his physical therapist to help him regain strength.  We are so grateful that the same nurse and the same physical therapist are his service providers.  We really liked both of them.  Of course they don't stay long when they come, but it is nice to know they are with him.  I know that they will help him with whatever he needs and they know him well enough to know if he is not feeling well or needs help. The two of them have made the week easier.

Doug still has not passed the stone.  He continues to experience waves of nausea and some stomach pain, but nothing severe.  Mostly he does not feel well, because of the infection that is still in his blood stream and kidney.  It is like having the flu. He is still weak and does not have the strength that he had before he got sick.

I have been trying to balance caring for Doug, his additional needs, work, Trixie, teaching a class for NNU and preparing for our diocesan convention this weekend. I can see the light at the end of the tunnel right now and that is good.  We are hopeful that Doug can attend some of the convention so that he can visit with friends and meet the Presiding Bishop, Michael Curry.  The Most Reverend Micheal Curry presides over the Episcopal Church in the United States.  We both have been impressed by him, his character, and his vision for the church.

It is late and so we pray:

God of answered prayers and sustaining hope, we give you thanks for the continued improvement of Doug over these past days. We give thanks for the angels that are his caregivers who have swept in to help us. We pray that you will continue to watch over Doug.  Strengthen him and give him hope.  Heal his body. This we ask in your name.  Amen

October 24, 2017: Day 340

It has been a busy couple of days.  They decided to send Doug home from the hospital on Sunday night because he was responding to the new antibiotic.  That meant that they needed to put in the PICC line so that I could do the IV at home.  To do that though I had to bring back into Boise by 9:15 Monday morning to get an infusion and to develop a plan for the IV.   When we got to the office the person in charge of the antibiotic infusions really wanted us to continue  coming to Boise daily.  I really did not want to do this.  I was insistant that we find a place in Nampa or I do the IV.  Apparently there is no place you can go in Nampa to get this done. She agreed to look around to find an infusion center who would be willing to provide the medication.  By late Monday morning she found a company for us to work with.  They would deliver the medication by 10:00 p.m. on Monday.  And so they did.  It arrived at 10:10 p.m.  We were able to arrange to have the same Home Health company monitor Doug's care and restart his PT. They came Monday afternoon for an evaluation and then started today.

Doug has not been feeling well.  He woke with abdominal pain this morning and some nausea.  He is not really eating much and it is very difficult to get him to drink fluid.  He still has the stone.  We are waiting for it to come out.  I am looking forward to that happening.  I am sure he will feel better when it is out of his system.  Hopefully it won't be to terribly painful with the stent, when it decids to pass.

The days are busy making all his appoitments.  He has follow-ups with all the doctors in the next 2 weeks. The unfortunate outcome of being in the hospital is that you have to spend so much time with doctors once you are out. 

We are both feeling weary of hospitals and going to the doctors.  Maybe me even more than Doug.  I am ready to be done with this phase of our lives.  I pray this stone passess soon, Doug return to health and we move on.

And so we pray:

God of Mercy, be with Doug as he continues to recover.  We pray that this stone passess soon, the infection clears up, and he feels better.  We ask for his strength to return.  Give us hope when we are discouraged and fill us with peace for the time that it takes for him to heal. Mercifully, heal his body.  In your name we ask it. Amen

October 22, 2017: Day 338

These past few days have felt like a roller coaster.  One day the conversation is to move Doug to a rehabilitation facility and the next day he is coming home.  Today I learned when I got to the hospital that they had decided to put a PIC line in Doug's arm so that he could receive his antibiotics at home.

The infectious disease doctor met with us and said that Doug would need the IV antibiotic for 2 weeks.  During this time it is anticipated that the stone will pass and the stent will be removed.  Where he gets the antibiotic will depend on the insurance.  He may need to go daily to an infusion center or hospital for the infusion, or he may be able to have it at home.  If he gets it at home, I will likely be trained in giving him the medication.

No one seems to believe me when I say I am not the nurse.  I just keep getting more training and more skills.  Anyhow it was decided that I can take care of Doug and that he can come home.  Home Health will not be set-up until sometime this week. They will probably only help with PT.  I am not sure the referral was ever formally made on Friday.  The good news is that Doug is doing better than he was last spring when he came home.  I helped him to transfer because he is still weak.  We are using the gait belt.  He was able to get undressed for bed on his own and get around in the push wheelchair at home.  I think he might have been a little surprised and happy with what he could do.  We both feel more hopeful about his recovery of skills.

So many people wished me a Happy Birthday today. Thank you so much for the love, care, and best wishes.  We did not celebrate, we were pretty task oriented.  Me with getting things done at home that needed to be done and then getting Doug home. And so all the warm thoughts were much appreciated.  And so many prayers have been answered with Doug's recovery.  We are thankful for that.

And so we pray:

God of Promise and Patience, thank you for the healing that Doug is experiencing.  Thank you for the care he has been provided by the nurses, doctors, CNAs and other staff.  Such careful care has helped us both to heal, in body, mind and spirit. Thank you for birthdays and the reminder they bring, telling us  that we are so lucky to have life. I am thankful for health.  Watch over Doug in the next days as he continues to heal.  May that stone pass quickly and painlessly.  In your name we ask it.  Amen

October 21, 2017: Day 337

Things are looking brighter today...

Doug is responding to the change in antibiotic that he started receiving yesterday.  He is more responsive and stronger.  He sat in a chair for several hours today.  Our friends Harry and Cory came and spent several hours with him today so that I could get some things done at home and take care of Trixie. He was able to sit the recliner and visit with them.  That is a big step up from yesterday.

Then he was able to get into bed with help.  He was able to stand, hold the walker and take a few steps into bed and then move himself up in the bed without support. It is great to see his strength coming back.

The doctor called me to talk about Doug coming home, hearing that he did not want to go to a rehabilitation facility.  She completely understood.  She said that it would be up to the infectious disease control doctor to decide when Doug can come home, but it may be as early as Monday.  If so, he is likely to come home needing antibiotics that have to be given twice a day by I.V..  It sounds like I get to play nurse.  My skill set just keeps growing.

Doug was much less tired today.  He was awake more and watching TV.  He was able to order his own meals on the phone, change the TV channels and call for the nurse when he needed something. It is so good to see his independence coming back.

Trixie, had another great day.  I left her for 8 hours and even though she was over the top excited to see me, she did not tear anything up and no accidents in the house.  I love this girl.

And so we pray:

Holy One, we give you thanks and praise for the healing of Doug.  Our hearts are full of thanksgiving for all the people who are praying for us and sustaining us.  We thank you for hearing our prayers and filling us with hope.  Be with us as we sleep this night and give us peace. May we awake tomorrow more hopeful, more thankful, and more joyful in your healing presence.   May Doug awake wrapped in your healing blanket of love and renewal. Amen

October 20, 2017: Day 336

Today was a little difficult for lots of different reasons.  I took Trixie to the vet and she was wonderful.  This was her first trip. The vet thought maybe trying only valium for now and only when we leave her. Trixie and I then went to Camp Bow Wow and they would not let her stay because she did not have the Bordetella immunization.  We did not realize that until we got there.  I had all her paperwork from her adoption and she had spent time kenneled before her adoption and in Pen Pal placement she was with 12 other dogs.  And so I called her vet and they were then out until 2 for lunch.  Camp Bow Wow said they could give it if I went and purchased it at  Zamzoes.  And so I did.  They still can't take her for 3 days now.  And so I took her home and settled her in and got some lunch for us.

When I got home Doug called me and said a nurse was in talk to him. I think she is actually a transition specialist.  She gave Doug a list of rehabilitation places.  They recommend he go to a rehabilitation facility after he leaves the hospital.  He was upset and said no.  He told her to call me. She called  not long after that.  I told her that Doug spent 4 months in the hospital this year and he does not want to return.  We should look into Home Health again with the agency we had before.  She agreed to work on this.  She wondered about our home assessibility, and so I went through all that with her and told her that Doug is doing better now then when he was sent home from the the Elks.  We can handle it, even though both Doug and I feel a little discouraged having to go through this again.

Over the last few days they have been growing cultures to be more specific in fighting his infection. His white count had not been going down.  They have brought in infectious control.  Another bug may have been introduced during surgery.  They are not sure.  They started new antibiotics today.  Doug will be in the hospital at least a couple more days, depending on how he responds to the antibiotics.

Physically he is really weak again.  The PT and OT got him to a stand and he  took a couple of steps, but that is it.  I hope once the infection is gone, he will do better.

Angie and the little boys came to the hospital to visit, which brightened all our spirits.  After a visit we went over to Whole Foods to get some dinner.  It is always fun to be with the kids and the food was great.

When I got home around 9:30 last night Trixie was more than delighted to have me home and she settled down quickly to my delight she had not torn up anything.  She is really doing her part to help out.  Thank you Trixie.

And so we pray:

God of Hope, today was a tough day for us.  It felt like we stepped way back and now we have to begin again, just when we had gotten life back.  Give us strength for the days to come.  Strengthen our vision of healing.  And bolster our hope.  Help us to have confidence in your healing power. Heal Doug.  We give thanks for Trixie and her partnership in being a healing presence in our lives.  Watch over her when she is alone and sustain her hope and confidence in our love.  In your name we ask it.  Amen.

October 19, 2017: Day 135

Doug waiting for surgery.

Happy 11th month Stem Cell Birthday! It seems crazy that this is what I am thinking about as Doug is laying in a hospital bed, just 24 hours after surgery.  But honestly I am so grateful Doug had a kidney stone and not an MS exasperation.  With everything he has been through, we are still hopeful the MS has been stopped.  And so for now we will  just deal with the kidney stone.

The sad part is that Doug is extremely weak. Just last week he was dressing himself, getting to the bathroom by himself, and taking care of Trixie.  I had to dress him to go to the hospital and use the gait belt to get him into his wheelchair.  I have not had to do that for months.  Today he was only able to sit on the side of the bed with help.

I think it is discouraging for him.  I can't imagine how hard it must be to have worked so hard to regain skills and then to have them gone in a couple of days.  I am praying that as soon as the infection is gone, his strength will return.

Trixie sleeping on Doug's side of the bed.

And Trixie, well, I was really proud of her today.  Angie was going to be busy today and she was going to have to spend time in a crate which scares Trixie to death.  As I got ready to leave, Trixie, went and laid under my desk as she often does and just watched me like most mornings.  She has become resigned to my leaving in the morning.  Doug always gives her a treat when I leave.  Well, I decided to see if she would be ok if I just gave her a treat and walked out the door.  She took the treat, looked sad, but did not bark or follow me to the door.  I knew I was taking a chance not locking her up, but she was perfect.  When I got home 7 hours later, she had not torn up anything.  I am so happy with her. Hopefully we can do the same tomorrow.

And so we pray:

God of Healing and Strength, Doug is so weak and so sick.  It is hard for him to see the light right now, with feeling so miserable.  The infection in his body has taken all his strength.  Mercifully remove the infection from his body, return his strength and give him hope.  Help him to focus on his 11 month birthday and the stopping of his MS. Watch over our Trixie as she copes with having Doug and I gone. Help her to feel safe.  And dear God, give me strength and wisdom in the days to come to make good decisions and to act with compassion as Doug continues to heal.  In your name we ask it.  Amen

October 18, 2017: Day 331

After a wild, and woolly day yesterday I am happy to report that things are stable.  Doug awoke at 4:15 tin the morning extremely weak and having a lot of stomach pain.  He wanted to go to the hospital.  This says a lot about Doug's pain level since about the last place he wants to go back to right now is the hospital.

We went to St. Luke's, Nampa, emergency.  He had a great doctor who ran lots of tests and after blood tests, x-rays and a CAT Scan, she discovered that Doug has a very large kidney stone and an infection. She made arrangements to move Doug to St. Luke's, Boise, downtown.  The urologist on duty today is Doug's urologist, Dr. Fredricksson.  We were so grateful to hear this. He knows Doug's history and he has been treating him for 10 years.

We did not get to Boise until around 1:00.  By that time they had given him IV fluids and two IV antibiotics. We were blessed with company this afternoon.  Rev. Jennifer and John came to check in on us and to pray for Doug, our fiends Cory and Harry came by to keep us company, Norm, hospital friend and chaplain came to check on Doug and pray with us and Fr. Dave came by to anoint Doug and check on us.  Then after much waiting, the doctor was finally free and had an OR room at about 9:15 p.m.  Surgery took only about 30 minutes, but recovery took much longer.  It is 11:15 p.m. and I am still waiting for Doug to return to the room.

I did get to see Doug in recovery for a few minutes.  The nurse said he was doing really well.  He looked great. His color was good, blood pressure perfect and no temperature.  He seemed relieved it was over and looking forward to recovery.

Thank heavens for Angie today.  We have been so worried about Trixie.  She is so afraid to be left alone.  After almost 5 hours in the crate at home alone, Angie picked her up around 9:30 this morning and took her with her to work on a house they are fixing up today and then took her home this evening, despite the fact she had to put her cats in another room for Trixie to be there. Doug and I would have been stressed all day worrying about Trixie, had Angie not taken her.  We are so grateful.

We met with the anesthesiologist before surgery.  This was an area of worry.  Because of Doug's weak muscles and underlying MS he was concerned about how Doug would respond to the anesthetic.  We decided to use as few drugs as possible to fully sedate him.  I was concerned about a paralytic.  I did not want Doug to wake up again with even more problems.  I am happy to say having just left Doug in recovery, Doug is moving, talking and alert.  He did not have any problems with the anesthetic.

I am exhausted.  I hope Doug gets back to the room soon, so that I can make sure he is settled in and has a good nurse.  We have not met the night nurse yet.  So far, everyone has been great here.  I am ready to get some sleep.  It has been a rough few days with Doug not feeling well at all and my concern and needing to provide him much more care.  Neither one of us have gotten much sleep. After Doug gets back to the room and I know he will be ok, I will leave for home andl pick up the Trix on the way home and hopefully be able to sleep before returning tomorrow.

Thank you, thank you everyone, for all your prayers, concern and love.  We are both so grateful, beyond words!

And so we pray:

God of Tender Care and Love,  thank you for surrounding us with angels today.  Thank you for all of the help, love and concern that has been poured out on us.  Thank you for healers who have come to us as doctors, nurses, ambulance drivers, chaplains, friends and priests. Through all the pain, fear and worry we have been surrounded by hope.  Hope for continued healing. And we give thanks.  Amen

October 17, 2017; Day 330

It has been two weeks since my last post.  Things had been moving along, while Doug has not had dramatic changes, it has felt like he is becoming more independent.  I had to go to Tucson last week and was gone four days.  Doug was able to stay by himself and take care of Trixie with some support.  My sister Kate came over every day and made dinner and took Trixie to the dog park.  This was a huge support.  Not only did I feel better knowing Doug was checked on each day, but also reassured knowing that he was getting a good dinner each night.  He sounded really good while I was good.

Tonight I am feeling like we were lulled into believing that he was going to continue to improve.
But things changed this weekend.  Saturday night Doug said he did not want dinner when I had prepared it and placed it in front of him.  I wondered why he did not tell me sooner.  Then at coffee hour on Sunday he did not have anything to eat.  When we started dinner Sunday night with the family he was having pain in his stomach, was nausus and had been falling asleep all afternoon.  He has not done that for a long time. By Monday night he was feeling really weak and falling asleep, but he did eat some dinner.

This morning, he could hardly dress himself.  When trying to get into the wheelchair he slid to the floor.  I had to get the Hoyer to get him back in his chair.  He seemed to have trouble thinking.  When trying to transfer to his recliner he slid to the ground again.  Again I had to get the Hoyer.  He has not needed it since June. Tonight he needed help undressing and getting into bed.  I am really concerned.  He is not running a fever, his blood pressure is good and his heart rate is ok.  He is just really weak.  It may just be a virus, which is the theory I have been going with  and it may just have more impact on him. If he is not better by morning, I will call his doctor and see if we need to take him to the hospital.  Please keep him in your prayers.

And  so we pray:

Loving God, be with Doug. May he experience your presence.  Give him a deep rest and a peaceful sleep.  Heal his body and give him strength.  This is so difficult for both of us.  It is hard to go down this path again.  Give us hope in our struggles and refresh our spirits.  In your name we ask it.  Amen

October 2, 2017: Day 315

 Today is Doug's birthday.  Yesterday we had a few friends and family over who have been a constant support to us during the last year.  Having a birthday after all that Doug has endured over the  past year was very sweet.  We both feel very humbled by all the support we have been given by so many and grateful that Doug is doing as well as he is.  And we are hopeful that the disease has been stopped.  Thank God and everyone who ha  held us in prayer and have done so much for us.

And to top it all off, Doug had his second Retuxin (chemotherapy) infusion.  I had to pinch myself in the middle of the treatment.  We had no difficulties.  They scheduled his appointment after the last and his first, treatment.  We went in, he had labs done and all his lab numbers were great.  They started the infusion and provided him lunch while having the treatment.  I brought him home and he had no negative side effects.  Such a relief.  The insurance covered the treatment and we only had to pay the co-pay. Whew...  So grateful!

And lastly, with friends gathered, we blessed Trixie last night.  She was not able to go to church for her St. Francis Day blessing.  She would have been way to rambunctious in a church full of dogs, cats and ????  I decided with getting Doug to church, taking my foster grandsons and teaching Sunday School, that I probably had my hands full enough without bringing the Trix along, much to her dismay and a her having a full-on anxiety attack.  Our friend Sherry gave her a St. Francis medallion, Doug blessed her and we all laid hands on her.  She is loved, she is loved.  And hopefully just a little calmer after the ceremony!
And so we pray:

God of Renewal and Rebirth, we give thanks for the celebration of another year of Doug's life.  We give thanks for the opportunity to be made anew, with new stem cells, and a new immune sytem.  We pray now for a new life, free of MS.  We pray that in the days to come Doug will continue to experience new life in walking, talking and living.  And we give thanks dear Lord for all the people who have walked this path to new life with us.  We give thanks for all the light bearers that have surrounded and encouraged us. And we give thanks for our Trixie and for the blessing she has been to us these past few months and the new life that she has brought us after loosing Stryder.  And finally God, we give thanks for our dear little foster grandsons and the sweetness and joy that they add to our life.  Watch over them please and protect them from all harm.  In your name we ask it.  Amen

September 24, 2017: Day 307

Wow, unbelievable that it has been 21 days since I last posted. Time has really gotten away from me.  More unbelievable is that it has been 307 days since Doug's Stem Cell transplant.  These last few weeks I have been busy with work: getting a new school year started, trainings, busy with church related activities like attending Diocesan Council, preaching and teaching Sunday School.  I also am teaching a class for NNU totally online and this has required me to develop some new skill sets. Life is returning to normal or perhaps a new normal.

Doug has continued to improve I am happy to report.  He is now able to shower on his own in our regular shower stall.  This is a big milestone.  He is also getting more independent in walking and it is becoming more functional.  He can walk with the walker,
and not just for exercise and practice walking.  He is standing in the kitchen at the counter to make himself coffee and to get things out of the cupboard. In general he is becoming more independent. Such a Godsend.

We both had dental appointments this month. I was concerned for Doug's teeth after the chemotherapy, intubation and long hospital stay.  But no need to worry.  Both of us got an excellent report that our teeth are healthy and no cavities.  Hooray!  We both had eye appointments as well.  Again, both of us got great reports.  Doug's eyes can be corrected to 20/20 and my eyes have actually gotten better. It is so nice to have good news from the doctors.

Today we presented to the adult Sunday School at St. Michael's Cathedral on "Life as Pilgrimage". Putting the slide show together, required me to look at pictures over the last year and to read parts of the blog from last winter.  I have not gone back and read any of the blog until now.  Doug had not seen many of the pictures and had no memory of the time that he was so sick.  It was like hearing it for the first time for him.  We both end this day, feeling even more grateful for Doug's continued recovery and filled with hope that the progression of his MS has stopped.

And so we pray:

God of Life, God of Journey, God of Hope we give thanks for all that we have and all that we have been blessed with.  We are grateful to call ourselves pilgrims.  As we traverse this path to wholeness and healing we have found so many fellow travelers on the journey who have been willing to walk with us.  We are grateful for their company and for their support. We are especially grateful for the strength that Doug has felt in the last week and for the hope he is experiencing in seeing his own recovery as possible. For this we give heartfelt thanks.  Stay by us now dear Lord as we sleep and greet us in the morning, filling our hearts with hope as we look forward to the promise of the new day.  Amen.

September 5, 2017: Day 286

Last night we returned from 2 days in Cascade.  Each time we go up the trips get a little easier.  Doug becomes a little more independent and enjoys being there a little more.  I realized that for several months since he came home, I have been pushing him back into a normal life.  It would be so easy to give up and just accept this level of improvement.  It takes real work to heal and needless to say we have to believe in healing to continue to push forward.

I started to write a post last night and remembered that last year before Doug had the HSCT treatment I had made a list of Doug's symptoms and had him rate them on a scale between 1 and 10.  I have done nothing with that list since we got home.  We certainly had not planned on him being paralyzed and having to come back from that. This list lost importance.  After he was paralyzed I started a separate list keeping track of each movement he recovered.  I looked at that list last night as well, but decided to only update the original list because what most people want to know and what we wonder about is if the HSCT worked.  Has the progression of the MS stopped?

Reviewing the list, t was heartening to see that physically he has almost recovered the skills that he had before we went to Mexico.  Not quite, but almost.  His balance to stand independently without the walker is not where it was last year yet, but close. He is not as strong as he was.  The good news is that he no longer feels dizzy.  Before he felt dizzy every day and took medication for it.  He no longer takes this medication.  Also he had daily pain in his abdomen.  He took pain medication everyday.  He had to sleep in the recliner to help control his stomach pain.  He no longer as any pain, anywhere.  He no longer takes pain medication. Last year he was having frequent choking (daily) and he would pound on his chest.  He no longer is choking. He has had migraine headaches for years and years.  He is not having migraines.  Also he rated numbness in his feet as a 2-3, which was fairly low. But he does not have any numbness in his feet now.

What do I make of all this?  Do I dare hope?  It certainly looks like Doug is not progressing with the MS and he is indeed recovering some.  I could not say that before, because he has been recovering from polyneuropathy.  We had no idea what was going on with the MS.  In the past he has never had a respite from the progression of the disease.  If one year after HSCT he is the same or better, this indicates that the treatment has worked.  Of course we can be more certain in a month or two, but we prayerfully hope this is true.

God of promise and hope, on this pilgrimage of healing and wholeness you led us to Puebla in search of healing and wholeness.  We give thanks for the healers that cared for us there and for those who have been with us on this journey since we returned.  As the days go by, we feel your presence with us.  We give thanks for Doug's continued improvement day by day.  We pray for strength and courage to continue on this journey.  Fill us with hope with the new day and we pray, heal Doug of MS.  Amen