July 24, 2017: Day 245

It is hard to believe that it has been several days since I posted.  We spent another long weekend in Cascade.  We took our grandson Cole, foster grandson Jordan, and Trixie our dog with us.  This was a grand adventure taking the whole crew by myself.  Needless to say I had my hands full.  This is probably best described when I decided that I could handle taking everyone fishing up at Horsethief Reservoir because it has an accessible dock.  Imagine this, Trixie is wildly excited with all the smells and people, the boys just want to get their fishing poles in the water.  Of course that means that I have to have to fix their lines, bait the hooks and cast for Jordan. In the meantime I have to assure that Doug is doing OK in the sun. I have to tie Trixie to Doug's scooter.  I forgot to mention all the work it takes for me to load and unload Doug's scooter and get him in and out of the car.  In the midst of all of it, the kids are pulling in grasses and not getting any bites,  Doug is holding Jordan's pole because it needs to be casted out again and I am casting Cole's pole when the game warden comes up behind us and wants to see my license.  It is at this point that I realize I have left my license in the car.  Doug does not have one because he is not fishing, yet he is holding a pole.  I explain, just the boys are fishing, but I can go back to the car with him and get my license...

As I look around thinking, how will I do this. when Trixie, cannot let me out of her sight.  The boys are ready to go and I need to put their poles down, Jordan is four and does not want to stay with Grampa, and I look at the game warden and say, "I have my hands a little full".  He says "Well, you don't have too many poles, I will let you go this time." I said THANK YOU!

It was a really busy weekend!  We had fun swimming, walking, playing in the river, reading, cooking and oh yes, fishing!  I was just a little worn out each night, taking care of everyone. Whew!  But, I was doing my favorite things, being with my family, and I am grateful that Doug is well enough to go out of town.

This week is Doug's last week with Home Health.  He is ending physical therapy .  He has made enough progress that they will no longer offer him services.  The next step will be for Doug to have a physical with his primary care doctor and she is likely to prescribe physical therapy in the community.  I think this will be good for him, however it will be more difficult getting him there 2 to 3 times a week and of course more expensive.  But it is the next step in the journey.

And so we pray:

God of our Journey, the path lays both behind and ahead of us.  It is time for us to take the next steps. We can only see as far as the bend and so we step forward with hope, anticipation and concern.  We wonder what will come next.  As we walk on, we pray that Doug will continue his healing, we pray that he will continue to strengthen his legs and his walking improve.  And we look forward to hearing when his retuximab infusions will begin.  Amen

July 19, 2917: Day 240

We are filled with relief and joy.  This afternoon Doug got a phone call from the hematologist's office, they are going to do the retuximab infusions.  I have been trying to arrange these infusions for months.  They were suppose to start in January.  Back in February, Dr. Ruiz, from Mexico told us to wait to have the infusions until Doug was completely well.  When he was medically doing better at St. Luke's they did not want to add anything until Doug was out of rehab.  When Doug got home in April, we made an appointment with his primary care doctor and she was supportive of the infusions and said she would help to get us an appointment with a hematologist.  We could not get an appointment until June.  And then at the appointment the hematologist said he would do the infusions if he could talk to Doug's neurologist or a neurologist about the effectiveness of the treatment.  And so I contacted his neurologist and asked our other HSCT friends if they would check with their neurologists.  I was concerned Doug's neurologist would not be supportive.  He told us last October he could not prescribe it because it was not approved in the US for this purpose with people with MS.

The stars aligned today.  Our neurologist must have decided to support the treatment.  Because Doug got a call from the hematologists office to ask him if he wanted the treatment and when he would like to start the infusions. We are so over joyed and relieved. Doug wants to start as soon as possible.

The relief comes from knowing that having the retuximab treatment increases the chances that Doug's MS will stay in remission.  And not having to return to Mexico for the treatment will save us close to $20,000.  It will also be so much easier on Doug if he does not have to travel so far.  Finally, we can begin the last part of this journey.

And so we pray:

God of Compassion and Faithfulness,  our hearts are filled with relief and joy to know that Doug can soon begin the retuximab treatments.  We are so grateful for all the people who have prayed for us and helped us.  We are thankful for the other HSCT patients who reached out to their doctors for Doug's sake. We are thankful for our doctors and their compassion.  Our hearts are filled with gratitude.  Thank you God for hearing our prayers and answering them.  Thank you, thank you, thank you.  Amen

July 18, 2017: Day 239

We are still in a time of waiting.  We have not heard anything Doug's hematologist or the neurologist regarding Doug getting the retuximab infusions.  I will call the hematologist tomorrow and probably have to leave a message to express my concern.  And then I guess if we don't hear anything by Thursday I will call my daughter-in-law to see what she can do. It is just so much more complicated and expensive to go out of state.  I am not sure what will happen with our insurance even if we can find someone to give the infusions if we have to go out of state.

In the meantime, I am continuing to read about pilgrimage.  I was reminded again tonight that a pilgrimage is about making the decision to go on the pilgrimage and to actively seek a new understanding or transformation. Often when you are on a pilgrimage it is not at the beautiful vista or the rolling stream that you have profound moments of understanding.  It is more often at those times of struggle, when you are wondering why you have decided to walk so far or even make this journey. The pilgrim is to continue in faith even when there is no evidence of progress.

In reading  a reflection I get from Richard Rohr this morning, he was writing about faith.  Faith he says is not blind assent or reasoned assent, but faith is essential to spiritual transformation. I am reminded that we must continued on, in the absence of seeming progress.  The destination is approaching even if we cannot see the station. And so we keep on taking the next right step.  After all when you are in the middle of no where what else is a person to do?

And so we pray:

God of faithfulness, how easy it is for us to think that we are in control of things.  How easy it is for us to think we have to have the answers.  How easy is it for us to get caught up in the "what -ifs". What if I do this or do that?  Doug always says the best prayers have feet.  And so we will continue to keep taking the next step, but as we do we will also trust in you.  We will watch in faithfulness to the unfolding of the path before us.  We will, with your grace, not forget that we don't walk alone. And for that, we give thanks.  Amen.

Trixie, our faithful  walking companion and  patient companion in writing the blog.

June 16, 2017: Day 237

As I write this post there are many things I am thinking of that I could write today. I have so many people that I am carrying in my heart that are in need of prayer.  And I am thinking about a recent survey I took, that is linked to identifying how I see and understand God. But, alas, I am reminded that the purpose of this blog is to document Doug's journey to healing and wellness. And so I will try to stay on topic.

In the early days of the blog, each day was monumental.  We celebrated life each day Doug lived. Later we celebrated small improvements of movement, including swallowing and eating.  So many people comment now on how far Doug has come and indeed he has.  But now the improvements are not as obvious. And he himself has to work much harder at making them happen.  At least that is my interpretation. There have been so many different stages of this journey since we first left for Mexico.

I so want Doug to walk and to get around more easily that perhaps that is why it seems like the improvements are coming less quickly. But in truth he is making improvements with his own independence.  Yesterday he was able to get most of his breakfast on his own.  This morning he got up on his own and got dressed and ready for church on his own.  As I write this blog I am reminded that this imiprovment is really huge.  Only 3 months ago when he came home he could do none of these things.  I had to move him, dress, him, bathe him, and take care of all his personal needs.  Only 3 months ago, yes, only 3 months ago.

Today seems like it is a good day to lay back and rest.  We should take in the Sabbath and be refreshed and rejoice.  And for our friends who are in distress, we know that God is with them, caring for them, as God has been with us. It is a good time to trust in the Lord.  And as my friend Vicki shared with me yesterday, I am reminded to be patient, for God will give us the strength we need and our burdens will be lifted.  And with that encouragement for our journey, we give thanks.  Amen

July 14, 2017: Day 235

We had some positive things happen today.  Doug's neurologists office called and we learned that he had called the hematologist on Monday, but was not able to get hold of him and he was waiting for a call back.  His nurse called us, to let us know that they had not forgotten about us.  And so we are praying that this may still work out for Doug to get the retuximab treatments here. We were grateful for the phone call.

Also today, Doug got up twice, by himself and walked alone a short distance.  It is wonderful to see him up walking.  He says he nervous and is afraid of falling, but honestly he looks pretty good when he walking.  The physical therapist told him that his balance is getting better.

And lastly, tonight I went into Boise to listen to my son-in-law play with his band at the Sockeye Grill.  Doug stayed home because it was so hot outside and the heat is very hard on him.  And he was worried about leaving Trixi.   This is the first time I have left Doug at home alone since we came home from Mexico.  The only reason I could leave him alone is because Doug can now do his bedtime routines and get himself into bed by himself.  Three months ago I was having to use the Hoyer to get him out of the wheelchair and into bed. We are so grateful for this progress. And it was so nice for me to have some time to relax, be with friends and listen to good music.

And so we pray:

God who is always faithful and always present, we give thanks for the small blessings of this day.  We are grateful for the hope that we experienced, hearing from Doug's neurologist. And we are thankful for Doug's continued progress, allowing him to stay alone, caring for himself and our dog. And we give thanks for the pleasure of music, time with friends and family and summer nights. Just as we grow weary, it seems we are given just enough sustenance to help us continue on this journy.  For all this we are thankful.  Amen

July 13, 2017: Day 234

The journey sometimes is long and tiring, but we know that the greatest
 strides are often made when we feel like we are in the desert.

Where do the days go?  They seem to march on.  There are always so many things to do for Doug each day and there are always so many things that I have to be planning for and attending to.  I keep hoping the day will come when we can live day to day without the continual tasks or concerns for his health.   Of course I hope that when that day comes, we are not dealing with the progression of Doug's MS.

Today, we went to the eye doctor.  The good news is that Doug's eyes have not changed too much and his doctor will be able to correct his vision to 20-20 vision.  His eye pressures were good.  He does have a small cateract starting on one of his eyes, and his opthamologist believes it may have started with his recent illness.  Hopefully, as he gets stronger, his eyes will get stronger and be able to focus for longer.

We then went and picked out new glasses for him.  He wanted glasses just like the old ones.  I wanted him to have some that are a little more trendy.  They were having a two for one sale and so we both won.

On the way home we had to pick-up more refills of his medications. Instead of having prescriptions that we can pick up one day a month, we are at the pharmacy a least 3 times a month.  He could have the prescriptions delivered by mail, but because of the number of medications he is still taking I have decided it is more important to get them locally where I can talk to to the pharmacists about how he is doing and responding and get support from them.  Hopefully one day in the not to far future, his medications will be less,  and his blood clot will be dissolved.

We still have not heard from the hematologist or the neurologist regarding Doug getting retuximab.  I guess it is time for me to call again tomorrow to see what is happening. It may be time to start seeking other providers.  Finding other options seems really difficult right now and ultimately expensive if we have to leave town to get treatment.

And so we pray.

God of Mercy and Love, come and be with us as we continue this journey.  Encourage Doug in his exercises.  Help him to see a vision of his own wellness and give me strength to continue to seek the healers in our community.  We pray for your healing and your strength for the journey.  Amen

July 12, 2017: Day 233

We are walking in those ordinary times, waiting for the next phase of our journey.  We have come far enough in the journey to know that there are days on the journey, that you must just keep moving.  We are waiting now to hear if Doug's neurologist has contacted the hematologist so that Doug can get the retuximab treatment.  This is an important  part of the treatment that Doug needs to help to assure that the MS does not progress.  And so we walk on...waiting...longing... for answers and looking for reassurance that the progression has ended.

Tomorrow Doug goes to the eye doctor.  He is not seeing well with his current glasses.  He has been seeing an opthalmologist since he was diagnosed with MS.  MS often effect the eyes,  For years now Doug has not been able to read because his eyes loose focus and tire easily.  We pray that his eyes have perhaps improved since his last visit.  We pray that his vision has received some healing.

In reading about pilgrimage tonight, I was reminded that the purpose of a pilgrimage is not only to seek but to also look deeper into ourselves and uncover parts of ourselves that may separate us from God, or separate us from being and developing into our true selves.  This reminded me that as we become inpatient with the loose ends with not having the retuximab treatments started and the uncertainty with how Doug will continue to make progress, that the true purpose of pilgrimage is to be changed.  This change can heal us and help us to become our authentic selves.  Then with God's grace we may offer that healing to others. We can never know how our pilgrimage will end, we only must trust and continue to take the next step.  And so we will.

God of ancient paths and steep stairways and long dusty doorways reveal yourself to us in all the unexpected ways that will help us to grow and to be transformed.  Help us to glimpse the future and fill us with gratitude and grace for all that will be and is to come. Transform and heal us.  Amen