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