Light chains still rising , Merry Christmas

We had a very good Christmas, with our son Kelly, daughter in law Jamee, and all five of our grandkids. I drove us to Highlands Ranch and back; roads were pretty good. Our grandkids are all in their 20's, moved out and working so getting them all together at the same time is a rarity. They opened presents with all the glee and no decorum - fun to watch!
Jamee and Kelly provided a wonderful brunch and we all sat at a long table - just like Norman Rockwell.
Christmas Eve we stayed home and watched the service on YouTube. It's always a big crowd at church.

Doug had his infusion yesterday, Dec 26. He weighed 156, pretty stable for him these days.
His counts were

• WBC          3.0           (normal is 4.5 to 10.0)
• HGB         12.4            (    "         14 to 18)
• PLT           127             (    "       130 to 400)
• ANC          1.0              (     "       1.8 to 8.3)  Low but qualifying 

  Gammaglobulins were low as usual.

Doug's Lambda light chains (cancer markers) rose again, from 6.6 last month to 12.0 mg/dL. Back in July, the Denver myeloma specialist said "if the Lambda light chains get to 300 mg/L" he will change Doug's treatment. It's a little confusing since our local med center uses Mayo values of mg/dL and Denver uses mg/L - we have to move the decimal to the right to get apples to apples.
So 12 becomes 120. We have a ways to go before hitting 300 but the trend is upward, unfortunately.

Dr. A, the local oncologist spoke to Doug while he was in the infusion chair. She said she is keeping a close eye on the light chains and is keeping Dr. M, the Denver specialist, posted.

We had more snow here today. It's very pretty and was about 6 or 7" but fluffy. Our 'greatest in the world' neighbors shoveled the drive before we got to it. Thanks Doug and Donna!

Doug is feeling fairly well and we have much to be thankful for.

Happy New Year to all!

Verse for the day:
May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ.  2 Th 3:5

ANC came up!

Doug had his dara infusion last Thursday. After a week off Pomalyst, his ANC came up from 0.7 to 1.9. Good! His weight was 156 - it has been stable for the last few weeks.
The nurse drew extra blood for the myeloma panel; no telling when we will get those results.

Doug has had a couple episodes of vomiting with no warning, and he feels fine afterward; no fever. Nothing to be concerned about unless it gets more frequent.

We hope you all have a Merry Christmas and safe travels.

Love to all.

Very low ANC, Thankfulness

We were able to be with family for Thanksgiving; the weather cooperated for us to drive to Highlands Ranch, home of our son and daughter in law - 2.5 hours from us. We've had some winter storms so we were fortunate to have the one day of good travel conditions. 4 of 5 grandkids were there, all but our oldest who lives in eastern Nebraska. We had a wonderful time, laughing, enjoying the kids and eating. And eating. Yum.  And we got home before dark!

Today Doug had his infusion, cycle 11 which means 11 months on this daratumumab treatment. More snow was falling on our drive to Salida, some low visibility but roads were passable.

Doug's ANC (absolute neutrophil count) was 0.7 - too low to qualify for treatment. Minimum ANC for treatment is 1.0. The neutrophils are part of the white blood cells - very important part of the immune system.
We thought Doug would not be able to get his infusion, but the nurse called Dr. A, the oncologist, as is required.
 Dr. A consulted by phone with the Denver specialist and they came up with a plan. Doug got the dara infusion, but he is not to take his Pomalyst pills for a week. That sounded good to us. So nice to have the two docs working together.

This week Doug's important blood counts were:

• WBC          2.6           (normal is 4.5 to 10.0)
• HGB         11.6            (    "         14 to 18)
• PLT           135             (    "       130 to 400)
• ANC         0.7              (     "       1.8 to 8.3)

Gammaglobulins very low as they have been.

We have much to be thankful for:
Despite low immune system, Doug has not had an infection. Of course we are being careful.
Safe travel on Thanksgiving and today.
Two oncologists who work together on Doug's case.
Great infusion nurses.
Our family.
Wonderful neighbors who clear our driveway.
Friends who pray for us.

Too many blessings to list!

Love to all.

"Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord."    Psalm 27:14

Denver specialist

Tuesday we went to Denver for a scheduled appointment with Dr. Matous, Doug's myeloma specialist.
He told us about new treatments in the pipeline. Before they are approved, new drugs don't get a name, they get a number. M-3258 is a drug in early trial now. Dr. M treated the first two humans in the trial! He was excited about that.

He has talked on the phone with our local oncologist, Dr. Arrambide. They have traded cell phone numbers so they can get in touch easily. Dr. M says because Dr. A is willing to take direction from him, we won't need to go to Denver so often. Dr. A will see Doug every month and keep Dr. M posted. That is great for us! Having the two docs on the same page will be wonderful. We will make the Denver trip every 4 months for now.

Doug weighed 155 pounds, not bad.
Dr. M emphasized to Doug how important exercise is. Studies have shown that patients who get regular exercise do better than those who don't.

Doug has a small lump on his head. Dr. M says it doesn't feel like a plasmacytoma to him, probably just a cyst. We will keep checking on it and if it grows, will get it biopsied.

I had to drive the last leg home in the dark. Not my strong suite! We prayed for safe travel and got home safely. Tuesday the roads were dry. Good travel weather. Much to be thankful for! Now we are getting snow.

Here is part of a devotional, Jesus Calling:
"A thankful attitude opens windows of heaven. Spiritual blessings fall freely onto you through those openings into eternity. Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, an ever-present and well-proved help in trouble."

We hope you all enjoy a blessed Thanksgiving!

New local oncologist, Rapid rate dara infusion

We got to meet the new HRRMC oncologist, Dr. Kathryn Arrambide. We like her very much. She's probably in her 50's, bright, knowledgable about myeloma;  she seems compassionate and has a sense of humor. Best of all, she is very willing to work with Dr. M, our Denver specialist. The two docs now have each other's cell phone numbers. She spent almost an hour with us. We have confidence in her.

Doug had a myeloma panel (blood test which tracks the cancer markers) done October 9. The Lambda light chains are up to 6.60 mg/dL and the Kappa/Lambda ratio is .1412 which is low. Not good.
 Dr. A talked with Dr. M and they agreed that Doug should be put back on daratumumab infusions every two weeks instead of monthly. We hope this will keep the myeloma in check. Or at least not growing so fast.
Doug has been out of remission for too long.
He weighed 152 today. He still has a hard time keeping his weight up.

Doug is now on Pomalyst instead of Revlimid. The Pom is being rough on Doug's blood counts but they are good enough to qualify for today's infusion.
ANC was 1.2, platlets 115, hemoglobin 11.2.
His immunoglobulins are very low also. So Doug has to be very careful to avoid large groups of people where he could catch an infection.
During the flu season the only place he will go is to church, where he sits on the end seat.

One thing was different about today's infusion - Dr M said Doug could have the new dara protocol of rapid rate infusion, since he has not had any trouble with dara. Rapid rate is the same dose but it is given in 90 minutes instead of 3 hours. Less time in the chair! His nurse monitored him to make sure he was doing ok. It went well.

Doug is not happy about going back to every two weeks but at least it will go more quickly.

Doug's mother died last week in Nebraska. She was 106 years old and her quality of life has not been very good the last few months. She has told us repeatedly that she is ready to go to heaven. She will be missed but we believe she is in a much better place and at peace, with Jesus. No more dementia.

Peace and love to all.

Today's quote:
  "There is always, always, always something to be thankful for."
Ann Voskamp.

Wellbutrin added, Pomalyst instead of Revlimid

On Oct 2, Doug saw his PCP nurse practitioner. She is the one who diagnosed Dysthymic disorder (a type of depression) and put Doug on Lexapro. That has worked but he still needed a boost, so she prescribed Wellbutrin which works with Lexapro. Together they seem to be doing the job. Doug has his sense of humor back. Praise the Lord!

October 17, last Thursday, Doug had his infusion of daratumumab. His weight was 152. He has been up to 155 but is having trouble keeping it there. Actually 152 or higher is tolerable in my opinion.
 It has been 9 months since he started the dara/rev/dex combo. It is now changed to dara/pomalyst/dex since he can't tolerate revlimid any longer.
His blood counts to 'qualify' for infusion were good:
WBC    4.8
HGB     12.7
PLT       166
ANC     3.6

HRRMC, our local medical center, has a new oncologist but we didn't get to meet her yet.

Our beautiful fall weather is over. It has been chilly and windy here, not good for Doug getting out for walks. He is using our recumbent stationary bike. He has a warm throw made by a dear friend that  helps him stay warm in his recliner. The dogs sure like to cuddle in his lap.

One of our church pastors dropped by to see us today. We enjoy chatting with him; he says we are encouraging to him - we say he encourages us!

We are thankful for a warm house and good friends.

Prayer for today:
 "We also pray that you will be strengthened with all his glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father."   Colossians 1:11

Cycle 8 Infusion

Today Doug had his infusion, cycle 8 which means the 8th month of daratumumab/dex. No Revlimid today. The dex was given IV; he will have a hard time sleeping tonight.
It was good to see our favorite infusion nurse Chris. She showed us photos of her daughter's wedding.
She knows Doug likes cheeseburgers, so she had already put in a special lunch order for the hospital kitchen. Cheeseburgers are not on the menu.

Doug weighed in at 149 today. He ate breakfast at home, and another one before infusion: scrambled eggs & hash browns. I don't know where those calories go.

All his pre-infusion blood tests came back with good results:
WBC    3.6
HGB    12.8
PLT      131
ANC     2.1

While Doug was getting his infusion, and a foot massage, I went to Walmart and did some shopping.
Just another day for a myeloma patient and caregiver.

We are praising God for his provision and praying for friends who face problems ahead.

Tomorrow is a rest day and then on Saturday an old friend who we know from our RV days is stopping by.

No more Revlimid!

Yesterday we saw Dr. Jeff Matous in Denver. Our appointment was a make-up since we had to cancel the last one when Doug got sick. This one was for 8:15 am! I was a little apprehensive to drive in the dark but I did okay. Thanks to all who were praying for safe travel; your prayers worked! We left the house at 4:15 a.m. since we didn't know what kind of going to work traffic we might run into. We got to PSL (presbyterian St Luke) at 7:00 so we went to the cafeteria for a bite.

Doug's weight was 150, not the worst but disappointing because he has been eating as much high calorie food as he can, with the good fats.

I had told the doc's nurse navigator that Doug has been feeling very tired and 'deflated'; he doesn't have any interest in doing much but he has been pushing himself. So when Dr. M came in the room he sat down at Doug's eye level and asked Doug how he was feeling. Doug said the usual, but finally he admitted that he doesn't want to get out of bed. Dr. M said that Doug's quality of life wasn't good right now. We both agreed. In addition to losing weight and fatigue he feels cold all the time.

Dr. M said it is the Revlimid causing the problems, not the Dara. Doug's body just can't tolerate Revlimid any longer.
He ordered a blood draw to check for low thyroid. Doug has been checked for that but not in a while.
Dr. M is having Doug stop the Revlimid immediately. He wants to wait a few weeks until Doug feels pretty good, and then he will replace the Rev with Pomalyst, a drug Doug has taken before but not in combination with Revlimid.

The Lambda light chains are still creeping upward. Last time they were 36.9 and now they are 41.2 mg/L. Dr M is keeping a close eye out but still feels he doesn't need to make any immediate change.  Right now Doug is on a once a month infusion. In the future he could change back to every two weeks.

Doug has an infusion tomorrow. He will be getting just the Dara/dex.
We will see Dr. Matous in Denver in two months.

Doug's PCP (primary care provider) has increased his dose of Lexapro from 10 to 20 mg. She said if he still feels 'down' after a couple months she would add another drug. He now has a diagnosis of Dysthymic disorder. It's a type of depression; in Doug's case caused by all the powerful drugs he is taking and has taken in the past.

We are thankful that Doug has a medical team who care about his quality of life, not just how long they can keep him alive. We continue to be blessed by the people God has surrounding us.

Love to all.

May you grow to love and accept the you God is making you to be. May you walk in a new level of grace and gratitude that gives you peace and leaves others encouraged. May you be more apt to look forward with hope than you are to look back with regret. May your heart spill over with joy at the very thought of the story God is writing with your life. Rest in His love. 

Philippians 4:4-5

Sick, cancelled Denver doc

We were supposed to go see Dr. Matous the myeloma specialist in Denver today.
But Doug got sick last night. I left home for a meeting at 6:30 in the evening. When I got home at 8:30 Doug was sick; he had been vomiting, had diarrhea and clammy skin. No fever.

So in the morning I called and left a message to cancel our appointment. The nurse called back and asked a few questions and said to call if needed.
Doug did get a little sleep. When he woke up I took his temp - 97 degrees. He ate a little, drank fluids and went back to bed. I've been taking his temp about every hour. It went up to 99.2 at 5 p.m. but went back down to 99 shortly after. I will keep checking it, but he feels a lot better and has been eating small amounts. I'm not going to get too excited but will stay alert. Fevers in an immunocompromised person can't be ignored.

We did get a rescheduled time - for September 17 at 8:15 a.m. That's early! It takes us 3 hours each way since I avoid the busiest roads. But that was the only date that let us see Dr. M and not the NP, so I took it. We could use prayers that I will be able to see well enough in the dark.

Last time I wrote I told you that Doug was gaining weight. The docs had taken him off Revlimid two weeks before the ear surgery and two weeks after, so he felt pretty good. Now that he has been taking Rev again, he dropped a couple pounds. He is eating as much as he can and gained some back. Two steps forward, one step back. That's the way it goes.

Our lovely neighbor brought food to us this afternoon. Sweet.

God's blessings to you all.

Cycle 7 goes well

Doug had his infusion on Thursday. Cycle 7. A cycle is one month, so Doug has been on this dex/Rev/dara combo for 7 months.
His blood counts were good; this is not the myeloma panel, but the 'qualifying' blood tests that are done before every infusion.
The Lexapro seems to be working very well. Doug has gained weight; Thursday he weighed 154 which compared to 147 last month is great! He is sleeping much better than he has for several years. He still has some fatigue, and always will - but he has been walking around the block with me and the dogs for two weeks now. He's finding that using a cane helps with his balance and footing outside.
He's pushing himself to do more. He is doing some small chores around the house, and he went to church with me last week. Praise God for all these things we used to take for granted.

With Doug doing so well clinically, it's hard to believe that this treatment is not controlling the myeloma. We go to Denver Sept 4, to see the myeloma specialist. I think Dr. M will try to coast for as long as possible before he switches Doug to a new treatment.

We are enjoying our good weather and just relaxing as much as possible. Soon the aspens up high on the mountains will start to turn yellow and gold. Our town has had lots of tourists and festivals this summer (and lots of traffic too!) but we are content to stay home.

Blessings to all!

PET scan results good

On August 5 Doug had his PET scan; it was a comparison study to one done last September 10. Both were done at Presbyterian St. Luke med center in Denver. It showed no new lesions - that's what we were hoping for!
It did show multiple old lesions in several ribs, right hip, right tibia and others. A PET scan can differentiate between old and new lesions.

One thing is mentioned that is new - "new consolidation peripherally in the right upper lobe of the lung." Consolidation means 'alteration of lung tissue from an aerated condition to one of solid consistency.' That could mean infection. Dr. M's nurse called to ask Doug if he was having any coughing. Which he is not. So because he is not symptomatic, no one is worried at this point.
We see Dr. M in Denver on September 4, and we are confident he will check it out.

Because Doug's scan was scheduled for early Monday morning, we drove to Denver on Sunday and had a wonderful visit with our son and daughter in law Kelly and Jamee and one of the grandsons. It was great to have some time with them.

Doug had Mohs surgery on his right ear two days ago. He had a spot of squamous cell skin cancer, but it's thankfully gone now. Looks like it is going to heal well.

I had to have a toenail removed July 31 and tissue removed for a biopsy. I had a streak under the nail that was suspicious for melanoma. Today I got a call that there is no evidence of cancer! Thank you Jesus!

We are praising God for so much this week.
Doug's next infusion will be August 22.

"I love you, Lord; you are my strength. The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety."   Psalm 18: 1-2

Keep on dara schedule

Dr. M called this afternoon! It was so good to hear his reassuring voice.
He reminded us that the light chain numbers are way lower than what they were when Doug had the plasmacytomas last December. So although the numbers are creeping up, he does not want to change anything yet. If the light chains get to 300 mg/L, then he says we will go to plan B. Which would be Kyprolis. As of July 9, the light chains were 36.9 mg/L.
For now he wants us to keep on the dara schedule - Doug will go to monthly infusions as planned. His next infusion will be August 22.

If the PET/CT scan shows anything it could change the plan. His team is working on getting the scan scheduled; they have people who specialize in fighting with insurance companies to get approval. I'm sure glad we don't have to do that.

Dr. M says there are three new drugs in trials right now. Although myeloma is not curable yet, we have options for treatment. So we are fortunate; we know folks who are battling with cancers and have run out of treatments.

Dr. M always puts things in perspective. He is calming and always has a plan.

So we are truly counting our blessings tonight.

May the Lord of peace himself give you peace always in every way. The Lord be with you all. 
2 Thessalonians 3:16

More waiting but not frustrated

We did not hear from anyone at CBCI yesterday. But Doug did get a text from Dr. M - he apologized, saying the day got away from him since he was the inpatient attending physician that day. They rotate that duty. He said we should hear on Monday. We expect that if we get a call, it would happen late in the day.

We still don't know what the decision will be,  but we don't feel frustrated anymore. We know what happened and we understand why. Frustration comes from wondering if anyone got the message; from not knowing why the delay or if anyone is going to answer.

We of course feel we need to change course right away. But we know from past experiences (too much experience!) that if Dr. M feels a situation is urgent, he takes action quickly.

Feelings are real. Feelings are because of our perception of a situation. But feelings are not always reality. Unfortunately we can't often see the big picture; what we see is magnified and close-up and emotional.
So we trust in the experience of our excellent Dr. M. who does care about his patients. And we trust in the Lord, and we wait.

We did get a call from the CBCI scheduler - we have an appointment on September 4 to see Dr. M in Denver. Not his PA or NP, but the 'real' Dr. M. That's a good feeling.

Peace to all.

More Waiting

The last few days have been frustrating.
 Dr M's nurse practitioner Kate did call us on Tuesday. She said to hold both the daratumumab and dexamethasone for two weeks before Doug's ear surgery and two weeks after. Both those drugs can slow the healing process. She said the order for a repeat CT scan of the sinuses had been changed to a full body PET/CT scan. Good decision! We are waiting for that to be scheduled.

 She said someone would call us Wednesday (Kate's day off) to say what the change to Doug's treatment will be. Evidently the Monday conference didn't happen. Here is where it got frustrating. No call on Wednesday. No call on Thursday, and no answer to an email to the nurse navigator. Nothing. So Doug texted Dr. Jeff Matous himself early this morning. (Yes, he gave us his cell number years ago.) Himself answered that text within five minutes - he said he would get with his team to discuss it later today.
So we are waiting again, this time pretty confident we get a phone call today. I hope!  We realize that his practice has gotten huge over the last 11 years. Not only is diagnosis earlier, but people with myeloma are living longer, so the patient load increases. However, there is no excuse for not returning a patient's email to the nurse navigator. She did email us this morning, probably after a word from the doc - here is the wording:
Hi Doug, 

I have not been able to sit down with Jeff to discuss. He was out of the office Wednesday and is now on inpatient service. I hope to catch him today to review your flowsheet with all your lab results. I will update you as soon as I make contact. 

Doug emailed her back to say we appreciate her response. So we wait. 

Yesterday Doug got his dara infusion that was already scheduled. He had lost another pound, down to 147. He's been trying but doesn't have much appetite. 
His infusion nurse who is wonderful and caring told him "Right now your job is eating. If you want to live, you eat!" She really laid it on the line. She told him he had to eat every two hours - high protein and healthy fats. Eggs, cheese, yogurt, nuts, peanut butter etc. Ice cream in moderation because of the sugar. She mentioned avocados which he won't eat. I'm thankful she was so blunt - it's what Doug needed to hear. He has to motivate himself; I can't do it for him. I can offer the food but I can't nag him into eating it or plead with him. I've tried. 
So far today he is doing much better!

Our wonderful neighbor is doing a small project on the house for us, unasked. We are blessed. 

Last night I read from a good devotional by Susie Larson:
May you slow down long enough tomorrow to enjoy the sacredness of the present moment. May God give you plenty of sacred pauses to reflect on His intimate and powerful love for you. May you enjoy lots of face-to-face encounters with those you love. May you receive the gifts He so lovingly wants to give. And tonight, may you enjoy deep, refreshing sleep. Tomorrow is a new day. 

Doug has hit plateau

Yesterday went to Denver to CBCI - Colorado Blood Cancer Institute where the myeloma specialist Dr. Matous has his practice. We saw his Nurse Practitioner; we knew we wouldn't see Dr. M this time. He has become so busy that we get to see him every other time we go. He told us early on that he picks out only highly qualified people who already are PA or NP and trains them himself in the nuances of myeloma, so he is confident that patients are not getting second rate care. Of course we would prefer to see Dr M every time but that just isn't possible. He is amazing and so are his team. There are several other physicians at CBCI but they don't know Doug's case.
Not only is his practice growing, as he is the premier myeloma doc in Colorado, but he also travels to medical conferences around the world to keep up with the newest in myeloma treatment advances. And as he learns the latest, he in turn speaks at conferences in the U.S. to help educate others.

The NP "Kate" said that it appears from the special blood work that Doug has indeed hit a plateau. This current treatment is not working anymore.
For the first three months the results were very good, then not quite so good, then not good at all. Kate said in cases like this Dr. M often will keep the same drug combo but put patients back on weekly treatment. He has gone from weekly to every other week, and was supposed to start once a month in August. Kate says patients often will begin seeing improvement when they are back to once a week. Dr. M prefers this to starting all over with a different drug.
This makes sense to us, but Doug is not excited about it. Kate will discuss this with Dr M at the all-patient conference on Monday.

Regarding the hypogammaglobulinemia, Kate said that as long as Doug is not getting frequent infections, especially in sinuses or lungs, doing nothing is best. She said we should just use common sense but not to stay home and be isolated.

Kate prescribed a special drug for the diarrhea that is common when patients have been on Revlimid for a while.

Back in December 2018, on Doug's latest PET/CT scan, there was a finding that has been a bit worrisome: "hypermetabolic lytic lesion in the inferior aspect of the left maxillary sinus which could be related to malignancy or inflammatory disease". Lately his nose has been kind of runny but no infection. Kate is going to order a repeat CT for comparison, to see if it has changed. We have to wait for insurance approval for that.

We talked about Doug losing weight. Kate looked back and said that Doug has lost 20 pounds in eight months - a significant weight loss! I think hearing that from her shook him up a little. If he just can't gain weight we will have to do something.  Right now he is drinking a Boost. Boost is not instead of meals - in addition to meals.

We left home at 10:00 a.m. and got home at 7:10 p.m.  It was a long day but I was able to drive okay. We had one detour and some heavy traffic but no problems. I have never liked driving on busy highways but God sent his angels to look out for us.
Here is a partial list of what I'm thankful for:

• Safe travel, good weather
• Kind neighbor who came over to feed the dogs and play with them. 
• Great medical team
• People who pray for us
• Doug's good attitude

These are lyrics to the song God Will Make a Way by Don Moen

God will make a way

Where there seems to be no way

He works in ways we cannot see

He will make a way for me

He will be my guide

Hold me closely to His side

With love and strength for each new day

He will make a way, He will make a way

Hypogammaglobulinemia, Lexapro, Cancer on ear

I don't have any good news to report. We might be facing another detour on our myeloma journey. The docs track Doug's light chains to monitor his myeloma, and the kappa/lambda ratio has been low. The latest blood draw on July 9 showed the ratio dropping almost by half. That's a sign the present treatment isn't working anymore. No one has actually said that to us - yet.
We will go to Denver to see the multiple myeloma specialist tomorrow. We know there are other treatments available, all with side effects though.

Doug now has "profound hypogammaglobulinemia".  This long word means there is a reduction in all types of gamma globulins, including antibodies that help fight infection.
People with hypogammaglobulinemia can more easily catch pneumonia and other infections that a healthy immune system would normally protect against.
We will find out tomorrow how the doc plans to handle that. Our chemo nurse says there is a nation-wide shortage of IVIG, and the infusion clinic can't get any.  So that's not an option right now. There is a form of it that is given sub-q (by injection into the belly).

Doug's foot fungus is back, after disappearing for a few weeks. I have a call in to the dermatologist; I'm sure Doug will need to go back on the oral prescription Lamasil, as well as the cream.

Speaking of the dermatologist, Doug has a squamous cell cancer on his right ear that has to be removed. Mohs surgery is scheduled for August 7. This will be done in Salida by the same dermatologist who did Mohs surgery on my nose. She is very good.

Doug is not feeling good most of the time but he has gone to church several times, and he rides with me in the car to run errands. He isn't eating a lot but he is trying to do better.

Our primary care nurse practitioner gave Doug a prescription for Lexapro, an anti-depressant that also helps with anxiety. The pharmacist said it might take 4 to 6 weeks before we can tell if it is helping. I'm hoping to see results sooner than that!

Doug did get the dara/rev infusion on July 11. He's been on it almost 6 months.

We are coping with all this one day at a time. And counting our blessings. There is always, always, always something to be thankful for!

Love to all.

Infusion #14, low ANC

Yesterday was Doug's 14th dara infusion; cycle 5, day 15. July will be cycle 6 with every other week infusions continuing. August will be cycle 7 - the first month with only one infusion.
Doug's weight was 151.5, better than the 150 two weeks ago.

His ANC (absolute neutrophil count - the infection fighting cells) was 1.1. If it falls below 1, he cannot get the infusion.  I'm glad he could get it. Most of his blood counts remain low, as is common with cancer treatments. His nurse said "be careful not to get an infection!" We do have face masks that are supposed to stop viruses as well as bacteria but they get hot after a short time of wearing. The best thing is to stay away from crowds, which we do anyway. And good hand washing.

Doug does seem a little less fatigued. He build two birdhouses and put them up on the fence. That is very encouraging.

His skin is looking good; we can't see signs of the fungal infection. But we will keep the July 5 appointment with the dermatologist anyway.

Doug continues to struggle with his eyesight. The scleral lens get cloudy and he has to take them out and clean them several times a day. But we are thankful he can see! I'm still doing all the driving and thankful I'm able to do it.

The local medical center HRRMC is close to hiring a new oncologist. We really miss Dr. O, who has such a good relationship with the Denver specialist. Unfortunately she has been very ill the past several months and probably will not be able to return. The staff and all of the patients (and caregivers) are very sad.
Meanwhile the department is making do with a succession of temporary oncologists. And the PA provides continuity; she is very good.

We have an appointment with the Denver myeloma specialist on July 17. We hope to find out if this treatment is effective. One of the temporary HRRMC docs said it appears Doug might have hit a plateau. That doc has quite an accent, so understanding him is difficult. We will get our information straight from the specialist.

So we keep on our myeloma journey, one step at a time.

Love to all.

"Peace is not the absence of stress but the presence of the Savior."   David Jeremiah

Infusion #13; too much dex!

daratumumab Infusion #13, Cycle 5 day 1

Doug's weight was 150 today - much better than 147 two weeks ago. Doug's labs were acceptable for infusion.
The infusion went smoothly and was finished by 2:00 p.m. We sure appreciate the friendly atmosphere, camaraderie with other patients and cheerful capable nurses.

Doug's feet and groin look much better since the dermatologist changed what another doctor had him on. She put him on oral terbinafine 250 mg. for two weeks and Lotrimin cream. We go back for a follow up July 5. She did say that with this disease cure rates are excellent but recurrence is high.

Several weeks ago I was doing some reading and found an interesting scientific article on dexamethasone. It said that when myeloma patients had been on dexamethasone for a long time, some doctors felt it was okay to lower the dex dose.
So I emailed our myeloma specialist in Denver (actually his nurse navigator) and asked if Doug's dex dose could be lowered. The answer was yes, but he wanted more information. The nurse navigator emailed me today with this message:

"I spoke with Dr regarding Doug's steroid dose. Since he is getting 100mg of IV Solu Medrol on dara infusion days he does NOT need to take 20 mg oral dex on Fridays. He has been taking too much steroid. On the off weeks from dara, he WILL need to take the oral dex."

He has been taking too much steroid! Solu Medrol is the equivalent of dex. We were sure - I had it in my notes - that Doug needed to take the oral dex every week. No mention was made of infusion days.
We are not pointing the finger at anyone. This is what can happen when one doc, our specialist in Denver, is running the show, but the actual hands-on is being done in a different medical center. Too many cooks in the kitchen. Resulting in double-dipping dex.

Here is a partial list of side effects of dex; Doug has many/most of these which is why I asked for a lower dose in the first place.

• Irritability 
• Difficulty sleeping (insomnia) 
• Swelling in ankles and feet (fluid retention) 
• Heartburn 
• Muscle weakness
• Impaired wound healing 
• Increased blood sugar levels
• anxiety 
• blurred vision, eye tearing, decreased vision
• fatigue
• dry skin
• skin rash
• unexplained weight loss
• glaucoma
• decreased resistance to infection

This reduction in dex will make a difference.  I am SO glad I took the initiative to ask about it. Thank you God!
Moral of the story - don't be afraid to ask questions. Don't ever assume everything is being done right. Medical people are human. Every patient needs an advocate who can and will ask questions.


This is from one of my favorite devotionals - Blessings for the Morning and Evening by Susie Larson.
May Jesus speak peace to your soul and calm to your storm.
May you sense His nearness even when the winds blow.
May you know His joy and strength from the top of your head to the tips of your toes.
May the hope He stirs in your heart cause you to live with a holy expectancy and trust that this storm too shall pass. 
And in the days ahead, may His very real love for you compel you to dance in the rain before the sun breaks through. 

new drug for skin

The scheme I had to remind Doug to drink more - setting the timer - didn't last very long. He said it was "a pain in the a_ _". So I'm keeping quiet about it. I know he is really trying.

Doug had his eyes checked a couple days ago. The optometrist says his eye pressures are under control now, so the glaucoma is not to blame for his vision problems. His vision is fluctuating due to the cancer drugs.
After I had the YAG laser procedure, I got new lenses for my glasses and my vision is fine now. I'm very thankful!

You may remember that one of the locum oncologists gave Doug a prescription for fluconazole for his skin problem. Doug took those pills for three days before he had to stop - it made him very dizzy and nauseated. We finally saw the light and went to a dermatologist.  The dermatologist took some skin scrapings and looked at them under a microscope - so she knew exactly what kind of drug to prescribe. Turns out the prescription cream he was using was not the right one and could have actually made it worse! There were too many doctors trying to help. Wish we had sought out a specialist right away.
So Doug is on two weeks of terbinafine pills. She said this drug can cause liver problems so it's not going to be a long term thing. We will go back to see her in three weeks.

We have not gotten the results yet from the latest myeloma panel which shows which direction the light chains are heading.

We have made an appointment to see the myeloma specialist in Denver, but it won't be until July 26.

This is Doug's week off of infusion; we will go back next week on the 13th.

Love to all.

Weight down again, Infusion #12

Today was Doug's 12th infusion. His blood counts were ok. But he weighed only 147 pounds. That's the lowest so far. Two weeks ago he was 151.5 so that's a big difference. He had to get a liter of extra fluids today.
I think dehydration is playing a part in his weight loss. He is eating reasonably well, but small amounts, with snacks between meals. Doug is good about taking his water jug with him and keeping it by his recliner at home. But - he forgets to actually drink from it! I have asked him to drink 8 oz of water every morning before his coffee to start the day.
I am trying to encourage, remind him to drink, etc because I am concerned. However that can easily turn into nagging and that's not good! However, if I don't say anything he forgets to drink. The latest scheme is for him to set his phone timer to go off every 20 minutes; then he needs to take a big swig from his water bottle. I'm hoping this will work.
Dehydration can cause so many problems including low blood pressure, dizziness, etc. And it can increase fatigue.

Two weeks ago the oncologist prescribed oral fluconazole for Doug's skin infections. He took it for three days and had to stop because he got very dizzy and nauseated. Even those three days seemed to make an improvement. So far Doug has seen our family NP, a foot specialist, and the oncologist has also checked his skin. Next week he has an appointment with a dermatologist. She is making room in her schedule for Doug, which is a blessing; otherwise he would have to wait a month.

I had the laser procedure on my eyes last week and my sight is better. I'm relieved about that.
Tomorrow I will see our optometrist  - bet I can read the eye chart now! And I will get new lenses.

Doug says he is giving up driving for good, except for the three blocks to our church. So my eyes need to work well.

I went with a good friend a few days ago to get a pedicure; silly, but having pretty toes lifted my spirits. Our weather is finally feeling like spring, so it's sandal time. The sunshine is very welcome.

Love to all. Hug someone today!

Today's verse:
"Fix your eyes on what is true, and honorable, and right, and pure, and lovely and admirable. Think about things that are excellent and worthy of praise."   Philippians 4:8

Infusion #11, fluconazole started

This has been a busy week, so this is three day old news!
Doug had his infusion on Thursday. His weight was 151, up a pound from two weeks ago. As long as he can stay in that range I think it will be okay.

Wednesday, the day before infusion, Doug had an appointment with the nephrologist (kidney doc). Myeloma can affect the kidneys, and Doug had kidney disease several years ago. He recovered from that with 70% kidney function but the nephrologist has been seeing him once a year. This time he said Doug doesn't need to see him unless something happens. That's good news.

Doug's lab numbers were good enough for infusion, which went well. We were in clinic about six hours - the lab was slow getting results back.
 Doug was scheduled for the regular monthly oncologist visit in clinic. Sadly, the oncologist we have gotten to know and like is out with serious illness. She's in the hospital in Colorado Springs and we all are praying for her. So we saw a "locum" (temporary) doc.
We mentioned that Doug's skin infections are not improving despite continued use of a prescription cream. So the doc gave Doug a prescription for an oral anti-fungal drug. He said it's only a two week supply, then he will reevaluate. He said it has side effects (what doesn't?) and probably best to use for a short time. Sure hope it works!

In addition to the myeloma, Doug has low immunoglobulins which is compounding the problem.
The doc said sometimes if a patient continues to have persistent infections, they give infusions of I.V.I.G but that's usually for sinus or respiratory infections.

Things are going along as well as can be expected here. Doug is managing his fatigue. He has started to drive again, but only short trips in town. This is encouraging.

We went to Colorado Springs twice this week; once to take our car to the dealership for recall work, then again yesterday to pick the car up. Meanwhile they provided a loaner for us to use. I enjoyed driving the 2019 Subaru Outback with all the new features. It had a large media/backup screen and a large digital speedometer display, plus lane departure warnings and cruise control that senses if the car is too close to one ahead - it slows you down automatically. Nice.

I'm tired from the highway driving but so thankful that I can do it.
Guess it's my turn for eye problems. My left eye vision has gotten much worse. Next Friday I have to go to a specialist in Colorado Springs to have a laser procedure done. Praying that God will keep me able to drive. Our wonderful neighbor has kindly offered to drive us on Friday.  We are blessed!

Love to all.

Today's verse:
I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them.    Psalm 91:14-15

Dara Infusion #10

Yesterday Doug had his dara infusion. Cycle 3, day 15.
His lab numbers were good enough to 'qualify' for infusion.

WBC    3.0
HGB    12.1
PLT     134
ANC   1.6
Blood pressure 123/62.

Labs are a little low, but not bad for a chemo patient.
He also had a blood draw for a myeloma panel. This is the test that shows the cancer indicators. Fingers crossed for that result.

His weight was 150, down from 151 last time. He weighed 161 in January when the chemo combo started. He is eating, and I'm encouraging between meal snacks. We have a couple different kinds of "Boost" type supplements but he prefers real food. Nuts are good.

It was an uneventful five hours in infusion clinic. It's hard for Doug to sit in the infusion chair for that long stretch; he could ask for a relaxing drug but he doesn't want to feel "drugged".
He didn't like what was on the menu, so he requested a cheeseburger. He said it was good.

Doug's athlete's foot is no better. We went to the foot specialist for a recheck and he said this might not go away while Doug is on these drugs. I treat his feet twice a day with two different kinds of cream. At least he doesn't feel any itching. Especially because of he diabetes, I keep a careful watch.

Our 'normal' keeps changing. Thank you Jesus for keeping us strong.
Love to all.

Less fatigue!

Doug has been on the lower dose of Revlimid for one week, and his fatigue is lifting a bit. He's not a ball of fire, but he is interested in doing more. He took the garbage out to the curb, is walking to the mailbox (not far) and is puttering around the house more. Not a dramatic change, but noticeable. We are very thankful!

We did stay home for Easter; our church live streams the services so we were able to watch it. Jesus is risen! Hallelujah!

Yesterday we took a drive up toward Cottonwood Pass. We saw several Bighorn sheep! They were fairly close to the road so we got a good look. Such magnificent animals! One was a big ram. Unfortunately there was no place to pull off the road to take a photo, but it's something to remember.
Further on and higher up, we almost got stuck in a big patch of slush/snow. It looked passable and we have four wheel drive, but we had no traction. I had a bit of a hard time getting turned around but it was worth it.

Tomorrow is Doug's day off infusion now that he is on every other week. He still has a ton of pills to take.
Love to all.

Today's verse:
"The Lord has done great things for us and we are filled with Joy."  Psalm 126:3

Infusion #9

Today Doug's blood counts were much better, and he gained three pounds! His fatigue lessened too.
It's amazing how much difference one week off treatment can make.

Labs:
WBC     3.7
HGB     11.7
PLT       199
ANC      2.0

So Doug got his Dara infusion, (with all the pre-meds too) and he got the go-ahead from the oncologist to go back on the Revlimid pill, at a lower dose of 10 mg. He started at 25 mg, then it was lowered to 15 mg, now he is at 10. Hopefully he will be able to tolerate that dose.

The lambda light chains have gone up, kappa has gone down and the ratio is low. Only myeloma nerds will know what I'm talking about, but that's not good news.  For the first two months of this treatment, the light chains dropped to a normal range. That meant the treatment was effective.
Rising light chains could mean the cancer cells are active again.

The local oncologist called Dr. M, the Denver myeloma specialist to find out how he wants to handle that. Dr. M does not get upset; he said a small rise can happen - don't worry about it yet, just stay the course and watch it. At the next infusion in two weeks, they will draw blood for another myeloma panel.

We will try to enjoy our latest "normal" for two weeks. I'm hoping Doug will be able to get out more.
It was a good day, but still tiring, in clinic for five hours. We are invited to our kids in Denver for Easter, but honestly, we are both bordering on exhausted. A two hour drive each way seems daunting right now. So much as I would love to see everyone, I think we will stay home.

I'm thanking God for keeping the caregiver strong and healthy to take care of Doug. I'd better pray for energy and stamina too!

Love to all.

Hold Treatment - low counts, weight loss

Doug had last week off from the infusion drug Daratumumab (dara) according to the treatment protocol, but he still took his oral drugs Revlimid and dexamethasone. His fatigue did not improve; so that points to the Revlimid as cause of the fatigue. Today was supposed to be infusion day - but his counts were low, fatigue still very much present, and he lost more weight - he was down to 148 pounds today; two weeks ago it was 152. January 17 he weighed 164.

So with all those factors combined, the oncologist decided to hold treatment - give him another week off the dara and temporarily stop the Revlimid until the fatigue lessens. Then the Rev will restart at a lower dose. He will keep taking the dex weekly. We go back next week.

Today his blood counts were:
WBC   1.9
HGB    11.8
PLT     105
ANC    1.0

We got results of the most recent myeloma panel blood test. This shows what the light chains (cancer markers) are doing. The last two months they were all within normal limits. Now the Lambda light chains are rising. Not the direction we want them to go!

Doug has been eating but he doesn't want large amounts. He is trying to do snacks between meals.

This part of our cancer journey is getting a bit bumpier. Lots of twists and turns on the road ahead. We cherish all our friends who so faithfully pray for us.

Today's verse is part of the lyrics of a song we heard in church recently:

Jesus draw me ever nearer,
As I labor through the storm.
You have called me to this passage,
and I'll follow, though I'm worn. 

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more. 

Infusion #8, Shingrex vaccine

Infusion #8 went well today. This is the last of the weekly infusion of dara. The next one is in two weeks.
Doug lost another pound - he weighed 152 today. He was dehydrated, I wonder if that could account for the weight loss? He got an extra bag of fluids. The nurse looks at his tongue to tell if he is dehydrated. He is eating fairly well - now we have to concentrate on drinking more.

Last week Doug's platelet count was low at 103. Today it was 142 - much better!

Yesterday Doug got the new Shingrex shingles vaccine, on the recommendation of the Denver specialist. There has been a shortage and many people are waiting. The pharmacist said he would move Doug to the top of the list due to his immune compromised status. That's good small town service!

Doug did not feel like driving today. His eyesight, although much improved with new glasses in combination with scleral lenses, is really not great. He says he will drive in town but not on the highway. That's okay.

That's all folks. Love to all!

Denver Myeloma Specialist

Yesterday we went to Denver to see Dr. Jeff Matous, the myeloma specialist who supervised Doug's stem cell transplant in 2009. Doug has been with him ever since.
We last saw him November 28, when he found the plasmacytoma on Doug's arm and ordered radiation. Doug's infusions are under Dr. Oatis in Salida, our regional hospital, but Dr. Matous oversees everything and works with Dr. Oatis to make decisions. We are fortunate that the two doctors work well together.

We think the world of Dr. Matous; he specializes in multiple myeloma and is brilliant. He is also very caring and sees his patients as individuals. He always asks what Doug is up to - he encourages Doug to be as active as he can. He is very interested in quality of life, not just how long his patients live, but how well they live. Plus he has a sense of humor and is fun to talk to.
Since Doug started with Dr. Matous, his oncology practice has grown quite large. He now has two excellent nurse practitioners who work closely with him and they also see patients. So when we get to see Matous himself it is a real treat.

Dr. Matous said Doug's fatigue is most likely from the Revlimid. We have been blaming the daratumumab. Matous said that if Doug remains so fatigued, he would consider lowering the Revlimid dose again. But we have to wait and see how it goes when the dara infusions go to every other week. Tomorrow is the last of the every week infusions.
Even when the dara is only every other week, the Revlimid stays at three out of four weeks, and the dex (steroid) stays weekly. The Revlimid and dex are oral drugs, so he takes them at home.

Dr. Matous is pleased with Doug's response to the treatment. That is very encouraging!

Matous said to watch out for any more plasmacytomas (soft tissue tumors); they can happen even under treatment, although it is rare.

I drove both ways to Denver, without problems. Doug is not confident enough of his eye sight yet to drive far. It was a beautiful day. We go the extra long way. I won't drive on I-70. We allow three hours each way. Denver traffic is always busy so we allow a cushion of time.

Our little dogs had a play date at a good friend's house while we were gone. That means a lot to us.

So it was a good day all around. Tiring, but good.

Love to all.

Today's verse:
I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love.    Psalm 59: 16-17

Infusion # 7

Infusion # 7 today. It went well. Doug's weight is steady at 153, same as the last two weeks.
Doug's white blood counts were down compared to last week, but good enough to get the treatment. One month ago, when Doug's counts were too low to have an infusion, his WBC was 2.0 and the absolute neutrophil count (ANC) was .9. Today the WBC was 2.5 and the ANC was 1.2.  Once those numbers were approved by the Dr, the nurse called pharmacy and ordered the dara; they do not mix it up ahead of time.
There was a delay in getting the drug from pharmacy today because a code blue was called and pharmacy has to drop everything and respond.

It was the scheduled Dr visit today; she was busy so we saw the nurse practitioner. Nothing much to report except that Doug's athlete's foot infection is not cleared up yet. It came on with a vengeance when Doug was neutropenic - he didn't have enough infection fighting cells. We have seen the foot Dr twice; he says it will take a lot longer to clear up while Doug's immunity is low. Doug can't see his feet well enough to make sure all the areas are covered with the cream, so I've been putting it on for him. Service with a smile!
Everything moved a little slow today. Doug's usual nurse had the day off and we had a nurse who was new to us. She did fine, just not as quick. We appreciate her taking time to double check everything.
The hospital lost the water supply for a time. No water came out of the faucets and none of the toilets flushed! This was probably related to the construction taking place. The hospital is expanding and it is a huge project. After an hour, the plumbing was working as usual and the water was deemed safe.

The infusion was finished at 3:30. we were both tired and ready to get home. But we are thankful we were only 30 minutes from home and not in Denver! We are blessed.

Love to all.

No weight loss!

Yesterday was cycle 2, day 15, also known as infusion #6. Two more weekly infusions, then it goes to every other week.
Doug's white blood count was a little low but within limits to proceed. His platelet count was 90 which is the lowest it's been. Normal is 130 to 400. I asked the nurse how low the platelets could go before it warranted action. She said if they fall to 20, a platelet infusion would be needed, but she doesn't expect them to get that low. So for now, nothing to be too concerned about - just more bruising.
Doug's weight was the same as last week, 153. I'm very happy that he didn't lose more weight. He's really trying to eat. He got an extra bag of fluids yesterday, since he was a little dehydrated.

Today was dexamethasone day (we call it dex day); the day after each infusion he takes 20 mg of dex. It's a type of corticosteroid. It energizes Doug for a while. Today he ran errands with me - he sat in the car mostly. But he wanted to get more walking in, so we went to the Tractor Supply Store, which is not ever crowded, and walked around. They had the baby chicks in heated pens - so cute! And they were giving away baby ducks  free to good homes. I was tempted for about 1/16 second.

The infusion was finished at 2:00 - five hours in clinic. Not bad!
Praise God for an uneventful day.

Love to all.

Today's verse:
Search for the Lord and for his strength; continually seek him.  Psalm 105:4

Better Vision

Doug got his new bifocal glasses; he has to wear them in addition to the scleral lenses. Now he can see much better and reading is much easier. Praise God! He hasn't tried driving yet but should be able to when he feels like it.

Yesterday was day 1 of Cycle 2. That means there are three more weekly infusions - then it goes to every other week. We are looking forward to that. The fatigue seems about the same; no energy.
Doug has lost 8 pounds since starting the infusions. He doesn't have much appetite but he is eating. Things are going as well as possible right now.

Love to all.

Verse for the day:
May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ.  2 Thessalonians 3:5

Blood counts have rebounded!

Good news - Doug's blood counts have rebounded nicely with a week off the chemo drugs! So he was able to get his infusion yesterday. The Revlimid dose will be 15 mg instead of 25 from now on, so hopefully he will be able to tolerate the chemo better.
His ANC went from .9 last week to 2.2 - much much better. We are very thankful and praising God.
He walked a block outside today - go Dougie!

We spent five hours in the infusion clinic today - not bad. Three hours of actual dara infusion and two of all the prep stuff.

Doug will be getting new bifocal glasses in about two weeks. With the combination of the scleral contacts and new bifocals, he will be able to see not only far but up close. Yay!

Love to all.

Today's verse:
May the Lord bless you and protect you.
May the Lord smile on you and be gracious to you.
May the Lord show you his favor and give you his peace. 
Numbers 6:24-27

Scleral lenses work! Infusion on hold.

The good news first - Doug can see much much better with the scleral lenses! This is an answer to prayer. He has to get used to wearing them before we know if he can drive. And he has to get used to putting them in and taking them out. So far it is tricky; there is a little suction cup thingie to use for insertion after filling the cup of the lens with a sterile solution. He has to hold his head horizontally so the fluid stays in the cup. Getting them out was difficult the first time. It's a learning curve for sure. But we are thrilled that they work - the optometrist was excited too; he wasn't sure they would work.

The bad news: the chemo infusion was not given today. Doug's white blood cells are too low. Normal WBC (white blood count) range is from 4.5 to 10. Doug's was 2.0.
The white cells that fight infection are the neutrophils. Doug's ANC (absolute neutrophil count) was .9 - normal range is 1.8 to 8.3.  So Doug does not have normal infection fighting ability right now. He is officially neutropenic. Not what you want to hear during flu season!

The oncologist wants to wait and see if a week off treatment will bring the counts back up without using Neupogen.
We are hoping that a week off treatment will perk Doug up, especially the fatigue. He is also losing  his appetite some.

This is all part of the roller coaster on a trip in Cancerland.

Love to all.

Today's verse:
"Give all your worries and cares to God, for He cares about you."
1Peter 5:7

Infusion #3, Exciting news for eyes

My caregiver stress has lessened somewhat. I'm sleeping better - that is a huge help. I've been able to spend some time with friends, and of course the best - keeping my eyes on Jesus. That's not always easy; I have to make that choice every day.

We went to our local optometrist Wednesday. He is a smart guy. He knew Doug's low vision wasn't due entirely to the glaucoma. He figured there was a problem either with the back of the eyes, or the front. He decided to try something we had never heard of - scleral lens. He fitted one on Doug's left eye ( a complex process) and had Doug try to read the eye chart. For the past couple of months Doug has not been able to read any of the letters. With the sample scleral lens he was able to read a few lines! Wow, that is exciting! The optometrist spent a lot of time fitting and measuring and taking 'pictures' on his high tech equipment. He is ordering custom lens for each eye. When they get here, Doug will have to learn how to work with them. One article I read said they are sort of a prosthetic for the eye; they float over the eye surface, without touching. They create a smooth corneal surface on eyes that have scarring. To learn more, go to the website sclerallens.org

Today was infusion #3. The drug protocol allows for increasing the rate of the drip on the third treatment if no problems have occurred on the second. This means 'only' six hours in the clinic - the infusion was completed by 2:00. We were pretty happy with that as it shaves two hours off the time. This should be fairly consistent from here on.
Doug is experiencing several side effects from the drugs. Fatigue continues; he just has no energy for anything. He's having some GI problems - I won't go into detail but you can imagine. Sleeping is not good. The doc is jugging some of the meds to try to get him more comfortable. Not the treatment drugs, the pills that are supposed to alleviate some of the side effects. We are thankful for the many excellent medical people who are caring for Doug.

Quote for today:
"When I trust deeply that today God is truly with me and holds me safe in a divine embrace, guiding every one of my steps, I can let go of my anxious need to know how tomorrow will look, or what will happen next month or next year. I can be fully where I am and pay attention to the many signs of God's love within and around me."     Henri Nouwen

Caregiver Stress

The second infusion on Thursday went well - no reaction. We got to the infusion center at 8:00 a.m. and left at 4:00 - much faster this time.  No driving in the dark!
The infusion nurses take such good care of their patients. Heated recliners (with massage) help a lot when one is sitting for such long times. Caregivers don't have recliners but I had a comfy glider; the rocking action is nice. Patients can eat during the infusions; Doug got breakfast - he didn't know what he wanted so the nurse brought him a tray of hashbrowns, scrambled eggs and bacon. Portions were huge! He will ask for smaller amounts next time.

When the massage therapist gave Doug his foot massage, she noticed a rash on his feet - because of his impaired immunity, he has athlete's foot! The oncology NP looked at it and prescribed a cream. We have an appointment to see the foot/ankle Dr on Monday. Don't want that to get out of control.

So next week we have three medical appointments: foot doc on Monday, optometrist on Wednesday, infusion on Thursday.

I'm thankful that Doug is able to tolerate the treatment so far, and for his good attitude. He is very patient with my driving and never complains. He is a man of faith.

I am experiencing some caregiver stress. It's hard to relax, sometimes hard to sleep and sometimes I get irritable and have low energy. I think most caregivers experience this over the long haul.
 I have been reading the Psalms and talking to God, and writing in my prayer journal. We can be honest with Him, and "vent". I know God is always with me; I have to ask Him every day to guide me. And He does! I think it is during hard times that we grow closer to God. I experience stress when I 'forget' to turn it all over to the Lord and trust Him unconditionally.
Talking to treasured friends and playing with the pups is a big help too. And going to see my nurse practitioner.
I thank God that He enables me to be a caregiver.

Love to all.

Verse for today:
You light a lamp for me. The Lord, my God, lights up my darkness. 
Psalm 18:28

First Dara infusion

Doug had the diode laser surgery on his left eye on 1-29-19. The procedure went well but it will be some time before we know results. After surgery, the eye pressure, and thus vision, can fluctuate for several weeks. So he still is not driving and we don't know if he will ever be able to see well enough to drive. 

on 1-31-19 Doug had his first daratumumab infusion at HRRMC. Dara is a targeted therapy. a monoclonal antibody directed against CD38, a molecule present on myeloma cells. He also takes Revlimid pills after the infusion, and dexamethasone tablets the day after. 

It was a marathon day. We pulled into the parking lot at 8:00 am and drove out at 7:00 pm.  

Several things have to happen before the infusion can start. First the nurse accesses the port using sterile technique. Then blood is drawn and sent to the in-hospital lab for testing. Sometimes the blood values drop low enough to temporarily halt treatment.  When results come back and the oncologist approves, the order to proceed is sent to the lab so they can prepare the solution. Also after the oncologist approves,  the pre-infusion meds are given, to lessen side effects. Doug got benadryl, dexamethasone and tylenol in his IV. The benadryl made him nice and relaxed and somewhat drowsy. One hour has to elapse after the pre-meds before the infusion can begin. So the first two hours were spent getting ready. 

Doug did have a reaction to the Dara, which happens to 50% of patients during the first infusion. They get a sort of allergic reaction that causes the upper airway to swell; if not treated quickly the airway can close down. 

Doug's nurse was watching him pretty closely without being overbearing. 

She told Doug what to watch for, so when he felt a little sore throat, he told her. She immediately stopped the dara infusion (temporarily), started some rescue drugs (solumedrol and pepcid) into the IV and called for the doctor and a respiratory therapist who came and gave him a bronchodilator (albuterol) with an inhaler. He had to breathe into a bag for five minutes. Because the nurse caught it quickly, there was no sense of panic, just teamwork and efficiency. Doug stayed calm. This happened about two hours into the infusion. 

Once all that was done and he was ok, the infusion was resumed at a slower rate.

A very long day! But at least we were home 30 minutes after leaving the hospital. I did have to drive in the dark - I just went slowly and prayed. We both were very tired. 

He will get the infusions once a week for two months, then every other week for another two months, then once a month, and continue once a month. He will continue on this drug unless he can't tolerate it, or until it no longer works. 

The infusion center here is amazing for a regional hospital. We know a few of the nurses from past infusions. They are all excellent; compassionate, cheerful and competent. We are confident in the care Doug is getting, and so thankful to receive this level of care close to home. 

Now hopefully a few days of rest. Neither of us is sleeping very well. 

Today's verse:

Fix your thoughts on what is true and honorable and right. Think about things that are pure and lovely and admirable. Think about things that are excellent and worthy of praise. 

Philippians 4:8

Eye Surgery Coming Up

On the 24th we saw the glaucoma specialist. Doug's right eye pressure is good (he's had many procedures on that eye and already has lost some vision). The left eye needs something done because the pressure is rising. The specialist said we have a few options, but some would require frequent trips back to Colorado Springs for follow up. That won't be workable for us, since Doug's infusion is coming up and we don't know how that will affect him. So we decided on diode laser eye surgery next Tuesday. It is called "cyclophotocoagulation". A laser is used to destroy part of the ciliary body which produces the aqueous fluid that increases eye pressure and damages the optic nerve.
It is usually only done after other more conservative surgeries have failed. And they have. It is also only used if the vision is already very poor. That is true also. The procedure will not reverse any loss of vision that has already occurred. The goal is to stop or slow down further loss of vision. Of course we can pray for a miracle that his vision will improve!
The good part is that our local optometrist can do the follow up.

Our schedule is full. Eye surgery on Tuesday January 29. The next day is a rest day. Thursday January 31, Doug will have his first infusion of the new cancer drug daratumumab (Dara for short). The first infusion is given very slowly so the nurses can monitor closely for side effects. We are told to expect 8 hours time. At least this will happen at the hospital 30 minutes from home.

A lot is going on quickly but time is of the essence. Yesterday, January 25, Doug had the surgery to put in the port for the infusion. He has a few days to rest up before Tuesday!
Our faith is keeping us strong. God is holding us up. Otherwise we would not be still standing!

Love to all.

Verse for the day:
"Do not be afraid, for I am with you. 
Do not be discouraged, for I am your God. 
I will strengthen you and help you. 
I will hold you up with my victorious right hand."
Isaiah 41:10

Home, New Oncologist

Doug finished his last radiation treatment last Wednesday and we came home - it is so good to be home!  We are so glad we beat the big storm.
Our two dogs had such good care from wonderful friends - they are even more spoiled than usual.

The next day, Thursday, Doug got in to see our local optometrist to get his eye pressures checked. His vision had deteriorated so quickly that we thought the pressures might have skyrocketed. The pressure was up in both eyes, but not dramatically. The optometrist said "Don't drive". Doug has not been driving at all since January 2nd. We have an appointment with the glaucoma specialist in Colorado Springs on January 24. He might want/need to do some kind of procedure; we will see.

Thursday we met Dr. O, the local oncologist 30 minutes away. We really liked her. The myeloma specialist in Denver, Dr. M, knows her and says she's good. He will continue to make decisions and the two will work together. Not having to drive to Denver so much is a huge help.

 The new treatment will be a combination of daratumumab/revlimid/dexamethasone, given by infusion. We just got a call today that our insurance has approved it. Doug will get a port put in next Friday January 25. I looked it up on YouTube; if you're not squeamish, look up "Power Port". It shows video of the surgery. Having the port is safer than injecting a needle into the skin so many times with the possibility of damaging the veins.

We explained to the oncologist that Doug's vision is  a big problem, and that the eye surgeon might need to do something. She agreed that the infusions can wait a short time, until after any eye procedure is done.

Doug is tired and has had to increase the dose of his sleep aid.

We are trying to get some chores done the next few days. A lovely neighbor shoveled our driveway today. Just one of the ways we are blessed.

Love to all.

Today's verse:
"You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You. Trust in the Lord always, for the Lord God is the eternal Rock."   Isaiah 26:3-4

Plasmacytomas shrinking

We are home for the weekend. The everyday things we take for granted seem like luxuries - like sleeping in our own beds and having the dogs curl up beside us for naps. I am reminded that we need to be thankful for little things as well as the big ones.

Our drive home yesterday was slow; roads were snow-packed. The weather reports said I-70 was icy in spots; we decided to come home on Hwy 24 which is a mountain road with hairpin turns but often better than I-70 which is so busy and frequently shut down because of wrecks. Visibility was immediately better on 24; the short bit we went on I-70 was so slushy and heavily traveled that we had to run the window washer almost constantly. All was well until we came up behind a semi truck that was going 15 mph. Unusual to see big trucks on Hwy 24. At least he was able to keep going uphill. For a long while there was no opportunity to pass because of all the curves. Finally I got a chance to pass. Our Subaru handled the snow pack very well. I had to use my winter driving skills and go slow but that's ok. I didn't feel scared - I knew God was protecting us.

Our good friends brought the dogs home yesterday, and they also brought us supper! Hamburgers fresh off the grill; what a treat! Friends like this are part of God's abundant provision, and we are so thankful.

Today we got the road grime washed off the car and can see what color it is. I'm doing a lot of laundry (ability to do laundry at home is another little thing to appreciate). We are also kicking back and just relaxing.

Three more radiation treatments next week. The radiation oncologist can see the plasmacytomas (you can just call them lumps) are beginning to shrink. Very good news!

Love to all.

Verse for the day:
"Great is His faithfulness; His mercies begin afresh each day."  Lamentations 3:23

Doug's vision worse

Last Wednesday January 2, we were on our way back to Edwards. I drove the first leg as usual and Doug took over just before we got onto I-70. Doug had been driving about ten minutes when he said he couldn't see well enough to keep driving safely. So he pulled over onto the shoulder and I drove the rest of the way. Doug's glaucoma must be getting worse. He will get his pressures checked as soon as possible.
We got home yesterday - Doug had a treatment Saturday due to the New Years holiday. We are going back to Edwards in the morning. I am doing all the driving, at least for now. God is answering prayers; I feel like angels are watching over us as I drive. I still don't like all those roundabouts in Avon and Edwards!
We will be able to come home next Friday after Doug's treatment, and will have a full weekend at home.

Doug is doing well; he is tired just as much from the stress as from the radiation. We both have been taking naps at Jack's Place.

We didn't go to church today, as Doug doesn't want to be exposed to germs.
I went over to our good friends to visit the dogs for a while. We are blessed to have such good friends care for them; we even have other dear friends who go to play with the dogs! Nikko and Pippa are happy and healthy, but I sure miss them.

Love to all.

Verse for the day:
"Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go."   Joshua 1:9