Doug's Bio

Douglas Peter Scott, 74, died September 9, 2020 in his home after a 13 year battle with cancer. 

He was born in 1946 in Omaha, Nebraska to Ernest James and Aurelia Scott, and was the second of two sons.

 

Doug served in the Air Force during the Vietnam war. He was a radio repairman based in Thailand. He never drew attention to his military service, feeling that attention should go to those who saw action.  

After the war he owned a snow removal and underground sprinkler business for a short time. He worked many years for the City of Omaha, mostly in waste water management. 

Doug’s hobbies were tinkering in his garage workshop and collecting and sometimes inventing ‘gadgets’. Doug never did anything halfway. He even rigged up an LED headlight on his walker. 

After he and Pat retired, they sold their house and furniture to become full-time RVers for several years before settling in Buena Vista.

Shortly after coming to Buena Vista in 2008 Doug was diagnosed with Multiple Myeloma, an incurable cancer of the bone marrow. Doug believed the cancer was a blessing, because the impact brought him back to God after years of secular living. 

Doug had a stem cell transplant and many different kinds of treatment, both pills and infusions. He rarely complained no matter what he was going through. He took advantage of his remissions and endured the hard times when the cancer mutated and the current treatment would fail. Then on to the next drug combination. He grew fond of his medical team, and they of him. 

He had a quiet acceptance of his cancer. He would say “It is what it is”.

Doug was a man of few words but a keen observer; he loved to make people laugh. 

Doug was preceded in death by his parents.

He is survived by his wife Pat, brother Jeff, stepson Kelly McGuire, daughter in law Jamee and grandchildren Ryan, Sean, Brendan, Sarah and Taylor.

In lieu of flowers, memorial donations may be made to Clearview Care Team or the HRRMC hospice. 

The End, and a New Beginning

 Doug enrolled in hospice on June 29, and he died on September 9. 

His last weeks were very difficult, and the last days were excruciating. The drugs were making him unable to respond at all. So we - hospice nurse and me - tried cutting down the dosage by half. But that caused Doug to become so agitated and restless that we had to increase the doses of morphine and haldol. His poor body could not be comfortable in that hospital bed no matter how much I tried repositioning him. My dear neighbors, pastor Tom, and anyone who came over would help me change him and prop him up with pillows. Doug became unresponsive. I used oral swabs to moisten his mouth. 

The last three days I prayed for God to release him from the agony and take him up to heaven. On the day he died, the hospice nurse was here. She had stopped in to check on him and was about to leave when she looked at him one more time and told me that she was going to stay and do some paperwork at our table. I was standing at Doug's side when his breathing became very irregular. Finally he took one last breath at 3:00 p.m., then no more. The nurse came over and said that he was gone. 

My first reaction was relief that his suffering was over. Joy that Doug was now in the loving arms of Jesus,  with no more suffering. This world is not our true home. Now Doug is in his forever home with God. Praise the Lord!

I was bone-tired. Our pastor came right away, and my very kind neighbor stayed with me too, until the crematory came to take away Doug's body. Pastor Zach made a phone call and got a date for Doug's memorial service. My neighbor helped me make the necessary phone calls to notify friends and family. The hospice nurse made the official calls to the coroner and crematory. 

Kelly and Jamee, my son and much loved daughter in law, got here as soon as they could and set up their camper in my driveway so both they and I would have a bit of privacy. They have been so helpful. 

Doug made up a notebook for me a couple of years ago; it has all kinds of information that I will need - things I need to do.  He was always thinking and planning ahead, trying to make it easier for me.  On the cover of the notebook he had written this: As I Live It Is By Grace. When I Die It Will Be In Glory.

The Celebration of Life service at church was held Saturday 9-19-20. It was live streamed for those who could not be there. We had a slide show of many photos of Doug over the years, with music. Both Pastor Zach and Pastor Tom spoke. Kelly got up and read aloud the memory cards that people had filled out - descriptions or memories of Doug in one or two words. Here are a few: Funny and warm, Tinkerer, Innovative, Never complained, Blessed, Brave, Fixer, Courageous, Generous, Humorous in a quiet way, Heroic, Doug's laugh, Loyal friend. I am so proud of my son; speaking about Doug was difficult to do. The first song was "I'll Fly Away"; the second and third were "I Need Thee Every Hour", and "Great is Thy Faithfulness". 

It was very emotional but it was a true celebration, not a funeral. 

Doug's ashes will be interred at Pikes Peak National Veteran's Cemetery on October 2 in Colorado Springs.  I picked that date because that would have been our 42nd wedding anniversary. He will have full military honors. 

I have so many emotions going on, and I am still getting rested from being exhausted for so long. Half of me is gone. But I am so blessed at the same time. Taking care of Doug was the hardest thing I have ever done. But I am so glad he was able to stay at home. 

My little dogs are a comfort. They have been stressed too. My rest and recovery will take time but God has blessed me with many friends who are ready to help me whenever I need it. 

Love to all. 

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

"God Himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever."  Revelation 21:3-4

Stopped Eating

I’m writing this as Doug sleeps. I got a good night’s sleep last night because our son Kelly and his wife Jamee stayed overnight last night. They were a huge help! 

With the help of Pastor Tom, I have people coming more often in the afternoons so I can take a quick nap. Even a short nap helps. 

Long-time friends from Nebraska were here for a few days. They came to see Doug, and at that time he was able to talk better. I know he enjoyed seeing them. They also told me to go take a nap while they watched him. 

An extremely kind neighbor has put himself on standby to help me if I need to change Doug or reposition him. He even stayed at the house overnight once so I could sleep! A different neighbor gave me his cell phone to call if I need help. Such people are a blessing indeed. 

Doug has stopped eating. Drinking was becoming difficult for him, so hospice recommended a thickener to add to liquids to make it easier to swallow. Even then, he doesn’t want but just a few sips. I’m using a syringe to give him water. 

He still tries to climb out of bed so needs constant watching. Most of the time he sleeps but he does have times of agitation. It is a big effort for him to talk. Many times he seems to be sleeping, he is listening to what’s going on around him. When I talk directly to him, sometimes he opens his eyes, but often not. He does understand what we say though. 

Pastor Tom came last night for a short time. Kelly, Jamee and our grandson Brendan were here then so they enjoyed meeting him. Pastor Tom prayed over Doug and read some scripture verses that were comforting, and reminded us all of God’s promises about all the new and glorious things he will have in heaven. Including a new body; legs that work, and no more pain. What joy that will be! 

But first the hard work, as the body fights to stay here even though Doug is not afraid and trusts God’s promises. 

Doug’s breathing changed yesterday morning. He has periods of about 10 seconds when his breathing stops (apnea), then it starts up again. This is to be expected. I called hospice to report this, and one of the nurses came out to check him. It is a normal part of the dying process. Doug’s heart is still strong. 

The dogs are a bit stressed - they know something is going on. They want to jump up to snuggle with Doug but we have to block them from jumping on the bed. They want to sit on daddy’s chest - not allowed now. Thanks to a lovely neighbor and the 13 year old sweet  daughter of friends, they get regular walks. That’s a tremendous help. 

The dying process is normal, but it is not easy. It is so hard to watch my husband go through all this. 

God does provide help, day by day, hour by hour. 

Proverb 3, verse 5:

Trust the Lord with your whole heart. 

Do not depend on your own understanding. 

Love to all. 

Update -

My dear friends who live next door just told me they are coming to spend the night tonight! What a blessing.

And another friend - a nurse who started hospice in our valley years ago, came over. She has a wealth of experience and talking to her really is helping me. 

Eating less now, home from respite

Doug came home from hospice respite this morning. The EMTs brought him in the ambulance and a hospice nurse came at the same time. She was very nice and showed me a few things - like propping up the urinal just right and leaving it there under the covers for as long as Doug would stay still. It worked! At least one time. 

Before he left the hospital, one of the nurses tried to put in a foley (urinary) catheter. She wasn’t successful. Doug said it hurt - a lot! I can see evidence of that. I had thought if Doug had a catheter it would make life easier for everyone. But that must have been awful - I don’t blame him for refusing. 

He is still hurting from the fall. I’ve given him morphine  already. He is restless and forgets that he cannot get out of bed. He turns over and tries to get out of bed. He throws his covers off, then gets cold. And he thinks he has to pee, but he already did. 

If this is too much detail, feel free to stop reading. This is real life, and it “ain’t pretty”. 

I’m hoping he will take a nap; every time I think he’s snoozing, he asks for something - sometimes he’s only half awake. 

I’m glad he’s home, where he wants to be. But it’s exhausting to take care of him. Maybe this is what it’s like to have triplets.  Never a moment’s rest. I will have to learn to nap in 5 minutes increments. Alone, I can’t do this. I’m trusting God to empower me, day by day, moment by moment. 

Most of the time Doug is in his right mind, enough to carry on a short conversation. Other times he forgets why he can't get out of the bed!

Paid caregivers must be in high demand. I’ve found two good ones, but they can’t start for a while.  One can give me three days a week starting next week. The other is taking care of a relative until Sept 15. 

I have a good friend who lives about a half hour away. She is a retired RN and is very knowledgeable and compassionate. She is my Go-to person that I can call if I get in a pickle; I know she would come. 

I’m writing this on my iPad so I can sit close by Doug. Gotta go. I’m back - he was trying to get a leg over the side. 

I’m finding that a gentle massage with lotion on his legs and arms helps to calm him. 

I can’t imagine how uncomfortable it must be to lie day and night in the bed, unable to even sit on the edge of the bed. I try to reposition him with pillows too. 

He’s resting now. Hallelujah!

Doug does recognize people that he knows well.  Yesterday friends he’s known for over 50 years came to see him. I think that brightened his day a little. He was grouchy because he wanted to come home! So if anyone wants to stop by and give a quick hello, you are welcome. Just text first. 

We have such marvelous neighbors. I cannot even begin to tell all the things they do for us. We are getting cheeseburgers tonight - Doug’s favorite (although he is eating only a bit he will enjoy the taste.) 

And friends - I opened my front  door this morning and there were a dozen beautiful yellow roses! Our fridge and freezer are close to full. 

 My verse for today and days to come:

“Do not be afraid, for I am with you. Do not be discouraged for I am your God. 

I will help you and strengthen you. I will hold you up with my victorious right hand.”

Isaiah 41:10

Another fall; Confined to bed

Things have gone downhill quickly. August 23 Doug fell in the bathroom at 4:30 am. He was using the walker. I called hospice and they sent out a nurse but I also called the squad to come pick him off the floor. He bumped his head so has lacerations but nothing serious there. His left hip has a huge bruise and is sore. 

The EMT guys are good with hospice - they understand they are just to help hospice patients off the floor and not transport to hospital. 

Doug is full time in a hospital bed now. We have it in the living room so I can watch him. No more transfers to wheelchair. He has no strength in legs and is a major risk for another fall. 

Doug is not handling his confinement to the bed well. He does not remember the fall, so he doesn’t understand why he can’t get out of bed. I tell him it’s because his legs can’t hold him up now. Then he wants me to put him in the wheelchair and take him to the commode - but that isn’t allowed because he would need to stand for the transfer to the chair. He can’t bear weight or he would fall again. He is really rattled. 

He HATES having to use the diaper! I don’t blame him. He throws a leg over the bed rail and says he’s going to walk. He gets very agitated. I have to be right beside him to tell him no, we can’t. He gets mad. He still has enough strength that he could climb out of bed, but he would fall immediately. 

Sometimes I fib and say “wait until the nurse gets here”. Or if he’s really really upset, I have to give him Haldol to calm him. This is ordered by hospice. 

I feel so bad being the bad guy. 

This is not the Doug I know but I still love him. 

This is not death with dignity, when your wife has to change your diapers. And he gets so frustrated and doesn’t remember why. Poor guy. Guess I’m not handling it well either. 

Today Doug was much calmer. The nurse came and he told her he was going to walk. She said that's not very likely but possible. So Doug and I will do some simple leg exercises while he’s in bed. We can hold out hope and do something positive. 

Today Doug was able to joke a little about the diapers: When he was wet, he called out to me “Cleanup in aisle nine.” When it was the other, he said “Cleanup in the basement.” So we are able to joke a little - attitude is everything. Much better - Doesn’t change the situation but sure helps a lot. 

I’m going to get a paid private caregiver to help me, probably for nights so I can sleep. Tomorrow I will interview a retired nurse who is recommended. I also have several other names of caregivers that friends have used. I won’t have 24/7 help but even a few hours would be good. 

There is also an option of using respite care, paid by Medicare. It is limited to five days/nights in a Medicare approved facility. But I need long term help at home. I'm exhausted. 

I’m glad our son and daughter in law were able to spend time with us just before this.

Our dog Nikko spends most of his time laying on the bed as close as he can get to Doug. He loves his daddy. He jumps up by himself. Our other dog Pippa spends her time on her own bed. She's also too little to get up on the bed. 

This is very hard. A lot of people are offering help in different ways. Many thanks for each of you. 

Love to all.

We know from Jesus' life that there's purpose to our pain. God doesn't waste anything, including suffering. He doesn't always remove us from trials, because He plans to use them.

Even if God's plans for our lives aren't what we hoped for, learning to trust God is part of His good plan.

Megan Fate Marshman, Encouragement for Today

Weaker now

 Over the last ten days we have seen changes. Doug has lost strength in his legs. He can't go up or down steps, even using the walker. We found that out when we were at our neighbors, on their deck. He would have fallen if our neighbor hadn't been right there to help him. 

He is able to get around the house with the walker, so that is good. A good friend from church brought over two kinds of wheelchairs to loan us. One is a lightweight 'transport chair' and the other is a regular type. And we now have a ramp down into the garage, so we have a way for him to get outside. Our church is loaning us the ramp - aluminum and not too steep. Two friends delivered and installed it for us. Our son and daughter in law had already come and helped me clean out part of the garage to make room for the ramp. 

 I wanted to try going for a 'stroll' in the neighborhood a couple days ago, so Doug humored me and got into the regular wheelchair. I backed him down the ramp and away we went. Our street has a slight slope to it; we don't even notice when walking or driving. But pushing a wheelchair is different. We felt every rock and incline. We didn't get as far as I intended. I was concerned that maybe I wouldn't be able to push him all the way up the ramp. He asked me to walk to the mailbox (not far away) while he waited in the garage. When I got back - less than two minutes later - the wheelchair was empty and Doug was gone! He had walked up the ramp using the walker! Smart man - he said it wasn't hard and he was careful. I was so relieved to find him in the house and no harm done. Now I need to practice pushing the chair up the ramp with some weight in it. I'm not as strong as I thought! Our neighbor says he will come over if I wimp out going up the ramp.

Doug has maintained his usual good attitude. He is amazing. We have amazing friends too. Some have brought food - and beautiful homemade bread. A few days ago a friend who is a professional violinist called and asked if she could come over and play for us. Of course! She had it all worked out - she was on the patio - Doug and I were on the deck. And a few neighbors came over and sat in lawn chairs to enjoy the music. All with social distancing and masks.  Noelle played a few hymns, some classical and some bluegrass. She played for a whole hour and even took requests. What a wonderful time it was! 

 We had a mystery gift too - yesterday when I walked out the front door I discovered a gorgeous display of art on the sidewalk - not chalk but an inscribed rock surrounded with marbles arranged just so. Each marble has a rose painted on it. The rock says "God's Love is surrounding you!" It is a sweet encouragement. I finally found out who did it, after everyone claimed to know nothing. A dear friend who is an artist, and her daughter. We didn't hear a thing, not even the dogs. 

Doug has been eating well and is maintaining his weight. He is having ongoing trouble with his eyes; he does listen to audiobooks. He never complains. The hospice nurse comes once a week. 

God is giving us the grace to live one day at a time. 

I'm closing with the words on a card from friends:

"Five things God wants You to Remember in Trying Times - You're never, ever alone. Nothing takes Him by surprise. When you're weak, He is strong. He's the God of new beginnings. His love never gives up on us."

Blessed with friends

Nothing dramatic has happened lately, and that's good. We are not bored. We have plenty of routine things to do. 

We have seen signs of God’s love in small ways:  

• cinnamon rolls left on our porch, 
• an elderly neighbor bringing us flowers and a sweet card,
• friends calling to see how they can help or just to say “hi”. 
• Friends stopping by to show us their new dog. Our dog Nikko was sure it was an intruder and sounded the alarm rudely. 
• Muffins and soup brought to us by a friend. 
• Books to read. In Doug’s case audiobooks from the library. 
• The rain we have had lately! I didn’t have to water, and the plants enjoyed the rain. 
• Friends bringing fresh veggies from their garden. 
• We have a volunteer blue spruce coming up. This is its third year. The first year I almost pulled it up but then decided to wait and watch to see if it would survive. Looks like it will grow up. 
• Our Pastor Tom and his visits and prayers.

We appreciate everyone. God has blessed us so richly with friends. 

I have been able to leave the house to go grocery shopping, walk the dogs and enjoy the sunshine. Doug is able to get in the car by going out the front door, but he says he’s not interested in going anywhere. I know that can be a sign of depression, and he is taking an antidepressant. But he is content to stay home. He’s not having much pain at all, just the intestinal issues. He sleeps later and takes a nap after lunch. 

Hospice has been active - one week we had four hospice visits. Nurse, chaplain, social worker, and an aide who just dropped off an item. The dogs are sure that everyone is coming just to see them! Three out of four hospice workers we’ve met so far are dog lovers. At one visit the chaplain spent most of her time petting Nikko. Maybe good for both of them. 

Thanks to hospice, we now have a toilet seat with arms that makes it easier to get up. Very helpful. 

Doug has been using the walker a bit less. He still gets dizzy if he bends over or gets out of bed too fast but he’s careful. 

Doug has, for a long time, been showing me things I will need to know how to do. 

A couple days ago I changed the lightbulb in the shower. I had to use the stepladder. Not my favorite thing to do but it went okay. Next time I use the ladder maybe I will go beyond two rungs, ha ha. 

Love to all. 

This is from Jesus Calling by Sarah Young:

“Hope is a golden cord connecting you to heaven. This cord helps you hold your head up high, even when multiple trials are buffeting you. I never leave your side, and I never let go of your hand. But without the cord of hope, your head may slump and your feet may shuffle as you journey uphill with Me. Hope lifts your perspective from your weary feet to the glorious view you can see from the high road. 

You are reminded that the road we’re traveling together is ultimately a highway to heaven. When you consider this radiant destination, the roughness or smoothness of the road becomes much less significant. I am training you to hold in your heart a dual focus: My continual presence and the hope of heaven.”

Weaning off the walker

Doug has been good about using the walker. I know he'd rather not, but I confess I am sort of paranoid about him falling again. 

Last Monday Dr. M, the Denver specialist, was scheduled to call us via Cisco Webex video. One of his nurses called to say that he was running late. 30 minutes later he was not available yet, so the nurse asked if he could call later rather then leaving us holding the phone. He finally did call, but we just did a plain conference call without video. That's fine with us. He said for Doug to get off the percocet and try ibuprofen for the back pain. That worked very well. Now he is not even taking that, and feeling better, except for some intestinal issues. 

Dr. M asked about the plasmacytomas. They are not painful; Dr. M says if they do start to bother Doug, a short course of dexamethasone can be given. 

He thinks dehydration was a big factor in Doug's falls; that he fainted. I agree. Drinking is something Doug can do. My job is to encourage him to drink more without nagging. 

Talking to Dr M always makes us feel better. He encouraged us to get out of the house when we can. We will visit with him again in two weeks. 

Two dear friends brought food over today. We are so blessed!

On Tuesday morning a different friend called and asked if she could bring some freshly baked peach cobbler. Sure! 

We also got fresh greens from a friend's garden. Yum.

Doug has been taking long naps in the daytime. Nothing wrong with that. 

I'm reading a good book: Something Has to Change by David Platt. 

Today a friend from church stopped by to bring us beautiful pink roses! Such a bright spot in the day. 

Today the hospice nurse came. She watched Doug walk without the walker and she thinks he is okay without it as long as he feels steady. She told me to let Doug use his judgment - she knows I tend to be over-protective! I just have to get the image of those falls out of my mind! I told her we really want to get out on these nice days. The steps going down to back patio are too many and too steep. So she watched Doug go out the front door and down the two steps without the walker. We do have a sturdy railing, thankfully. (Doug put that in several years ago with a friend's help, after I twisted my ankle.) She thought he did well. So now we can go for rides in the car! 

The nurse did caution him to use the walker if we walk to the mailbox, since the road surface is not smooth. 

Instead of weighing patients, hospice has a new way to check on weight loss. They use upper arm circumference measurement, using centimeters. Much easier than a scale! Today's number is a baseline, 23 cm. He still has an appetite and enjoys food but is eating less. His oxygen sat (saturation) today was 93%. 

We will get a nurse visit every week. 

One more bright spot today: one of the nurses from the infusion clinic at the hospital came to see us. She is such an encourager. Doug has always loved to tease her. Another of God's angels. I will say it again - we are so blessed! Of course we do have down days too, but counting our blessings is not just a corny saying - it works. 

We are trying to live in the moment, not always easy, but possible with prayer. God sends us many signs of His love. 

Today's quote:

"Our first and natural inclination in any trial is to pray for God to remove the difficulty. But God's first priority is often to strengthen us in the midst of the difficulty rather than to take us out of the difficulty. That's because He can see the treasure that lies at the end of the trial."  Gary Thomas

Doing better

Last Monday Doug started taking percocet for his back pain. He started on one pill every 4 hours but that didn't help the pain much. So the hospice nurse said to give him two pills and keep track of his pain level. After a couple days the pain lessened. But he started having some mental confusion. We are blaming that on the two percocet. So we have backed off to one percocet and he is clear headed now. I am thinking that soon he can do without the percocet - then the next goal will be to walk without the walker. He is taking a couple naps a day - that's good I think.

Friends have been bringing us food; they are much appreciated!

Today we had a very nice day. Our son Kelly and our daughter in law Jamee came up to see us. Jamee brought her famous beef burritos with green chile sauce and all the toppings. Jamee is a fantastic cook.
After we ate, Kelly and Jamee did all the kitchen clean-up. They are spoiling us.

While Doug was resting, Kelly helped me with a yard project that I had put off. Jamee and I carried rocks while Kelly figured out where to put them. I just have a little to do to finish it up. We have a tiny deck off the sliding door - I call it our deckette. It will hold one chair at an angle, so Doug will be able to sit out there if I'm working in the yard.
We have the best son and daughter in law!

So far Doug is being careful and using the walker faithfully, so I can relax a bit.

Monday we have a video chat with Dr. M, the Denver specialist. And Thursday the hospice nurse is scheduled to come. I can call her if I have a question or problem before then.

Love to all.

Verse of the day:
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."  Matt 6:34  The Message

Falling

Last Thursday we went for a drive higher up into the mountains, past Cottonwood Lake on a dirt road. Doug drove, first time in a long while. We went up until the road got too narrow and rocky and we saw more ATVs than cars. we found a place to turn around and came back home. It was fun to get out.
Friday we got the road dust off at the car wash. Good friends picked up a take-out dinner from a restaurant and delivered to us. Very kind and enjoyable!

Friday night about 10:00 Doug fell. He knows not to do this, but he bent over to turn off a floor fan before I could stop him. Next thing I know he was sprawled on the floor. He was conscious but dazed. He didn't seem hurt but he couldn't get up; couldn't get his legs under him. Best thing to do most of the time is let him stay on the floor for a few minutes. Finally I pulled a kitchen chair over to him and he slowly managed to get onto the chair. After a few more minutes on the chair, he held onto me and was able to walk to the bedroom.
I waited until 7 a.m. and called hospice to report the fall. Doug and I had a serious talk - no more bending over! We are very thankful he was not hurt. Hospice is sending us a walker.

Saturday and Sunday were nice quiet days.
Sunday night (last night) Doug fell again. It had started to rain and blow, lightning too. I woke up about midnight and Doug was sitting up on the side of the bed. I said "What are you doing?" He said he wanted to close the window. I told him to stay put and I closed the window. He had a bad fall several years ago and it was decided he has orthostatic hypotension. Fancy term for low blood pressure that can result in passing out if he gets up too fast. Pretty common in older folks. So he has learned to sit for a few minutes before he gets out of bed and stands up. That has worked well. Why he has suddenly forgotten to do that is anyone's guess.
I thought he was going to lie back down in bed. Then I heard a loud thud! When I turned on the lights, he was sitting with his butt up against the closet door. When I touched him he was cold, clammy and sweaty. So I pulled his pillow onto the floor and helped him ease into a lying down position. He said he wasn't hurting anywhere but he had a goose egg on the elbow and torn skin. Finally he was able to roll onto a rug and I used that to pull him closer to the bed. He felt much better to the touch. With my help he was able to get onto the bed. I bandaged his elbow. At 3 a.m. he woke me up and said his back was hurting and asked if I would give him some morphine sulfate - one of the drugs in the hospice kit. I wasn't sure how much to give so I called the 24/7 hospice number. One of the operators answered the phone immediately and said he would get one of the nurses to call me back.
Well - I had forgotten that I had my phone set on 'do not disturb' from 10 p.m. to 7 a.m. So the nurse's call to me didn't go through. She called our son who is listed as an emergency contact. So I reset my phone! Duh! Anyway the nurse told me it was okay to use the morphine and how much to use. She asked if we needed a nurse to come right out. I said no need for someone to come in the middle of the night. Neither of us got much sleep but Doug's pain was less.

Today he is better but the morphine makes him too drowsy. So the hospice Dr. wrote a script for a different pain med and the drug store delivered it today.

The chaplain Deb who is also a physical therapist came today. We had not met her yet. Turns out we know her mother in law who goes to our church. Deb is very kind and caring; we had a nice talk and she adjusted the walker to Doug's height. Deb loves dogs - Nikko snuggled right up to her. So far everyone we have met from hospice has impressed us. Compassionate and capable.

Doug and I have made a deal - no more getting out of bed without waking me first! I pray that his brain will wake up before his body starts to move.
We have had enough excitement for a while. We are both very tired.
Tomorrow his nurse is coming out.

Love to all.

Doing okay

Doug is doing pretty well. He has no pain, praise the Lord. He walked to the mailbox with me this morning. At a slow pace and using a cane, but it's so good that he gets outside. His appetite is good - he's eating well. I think he's feeling better with the chemo drugs washing out of his system.

Dr. Matous, the Denver specialist, is keeping up with Doug. We had a telehealth visit with him on July 6. We didn't realize he would be following up like this. He wants to check in every two weeks via video. I know part of the reason is for his own learning, since Doug is now a somewhat unusual case with the aggressive plasmacytomas. But he also really does care about his patients and does not drop them after referring to hospice, unlike some doctors. He asked how we are both doing with hospice, and how Doug is feeling. We told him having hospice is a comfort. He is a compassionate man. He wants to "see" us again on July 20.

Last Monday Doug's brother drove up from Denver. We had a good visit and went out to lunch - first time since Covid started. We sat at an outdoor table that was spaced far from the others. There was a nice breeze and we had an umbrella for shade. We had a lovely time.

Today was a good day. Our Pastor Tom called and came to see us. We always enjoy his visits. He's a dog person and the dogs are sure he comes just to see and pet them!

Doug's hospice nurse Alexis made her scheduled visit this afternoon. She said some people do so well on hospice that they graduate and come off hospice! If that happens they can go back on when needed. Alexis will come again on July 23. The dogs were so happy that two people came to see them!

We are keeping it slow and simple, looking for blessings and appreciating the cards and phone calls from friends. Most days I join Doug for our 'siestas' after lunch.

Love to all.

Today's verse:
"I will guide you along the best pathway for your life. I will advise you and watch over you." 
Psalm 32:8

Hospice

Once our local oncologist contacted hospice at our request, things started happening quickly. From my experience in the past as a hospice volunteer, I know many patients/families wait until almost the last hours to contact hospice, so I think they are used to responding quickly. We are an exception in that Dr. M advised us to meet and talk with hospice right away.

I think Dr. M wanted us to feel supported by a team who will be beside us. Ever since Doug's diagnosis in 2008, we have had strong support. First by Dr. M the Denver myeloma specialist who initiated Doug's first treatment followed by the stem cell transplant and many courses of chemo over the years. We would go to Denver once a month for years. We always felt we were in good hands by people who care. When Doug started getting frequent infusions in 2018, Dr. M referred Doug to HRRMC oncology in nearby Salida - only 30 minutes from home. Dr. M was still very much involved but the hands-on care was HRRMC oncologists, PAs and nurses. We got to know these people as our 'new team'.
Both Doug and I are really missing the weekly (or twice a week) contact with the nurses in the infusion clinic. Other than the actual infusions, Doug looked forward to seeing and laughing with the nurses. They really spoiled him with attention, and I felt so welcome too. They had an answer to every problem. A couple of the nurses have emailed us just to say hi; that means a lot.

When Doug went off treatment, we didn't have a team on our side anymore. I think that's why Dr. M encouraged us to get to know the hospice team right away.

On 6-24-20, the hospice nurse called and came over to meet us. Hospice is very much for the family as well as the patient. We liked her as soon as we met her. She has a good sense of humor (absolutely needed for this work in my opinion) and loves dogs. She also wanted to meet them! Alexis is her name and she will be Doug's regular nurse. She already knew Doug's medical history but wanted to hear it from him. After talking for a while, she excused herself to make a phone call. When she came back, she said she had called her supervisor - and that if Doug wanted to be admitted she could do it right away. She said Doug's diagnosis was "the golden ticket" to hospice. That made Doug laugh since she said it in a funny way. Guess you had to be there.
We thought about it and there doesn't seem any downside, so Doug said yes, go ahead with the paperwork. Even though Doug doesn't need hospice services now, we have a new support team again, and it's a comfort. Alexis said she will stop by every two weeks just to see if we need anything. She gave us a phone number to call if we need anything or have questions. We have Alexis' number and the office number which is answered 24/7.
 Doug's meds will now be paid for by hospice; they even arrange for the drugs to be delivered to our door.

We are going through a range of emotions, as it all seems surreal for now. Doug looks the same (cute of course) and he has no pain. He is on a new antidepressant now. I think we are both coping fairly well under the circumstances. I do feel kind of scatterbrained and sad sometimes. There is no "normal" now.

I plan to keep this blog going as long as I can and hope it can help someone else.
 Our faith in God is our anchor.

Love to all.

 Verse of the day:
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit."  Romans 15:13

Stopping Treatment

I have put off writing this post.
Last Monday we had the telehealth visit with Dr. Matous, the Denver myeloma specialist who has been treating Doug for almost 13 years.
This time Dr. M said the cancer has gotten more aggressive and much more serious. He said "Nothing will be straightforward from now on."
We knew the cancer markers have been going up more than ever before. But we expected him to pull another rabbit from his hat like he has done so many times. Not this time.

He laid out options, none of them good. There is a new drug approved by the FDA but it causes uncontrollable nausea that he said he would not use until it is "tweaked".
Doug would be eligible for one clinical trial - it is in phase 1, which means research is trying to figure out what dose is safe for humans.
If Doug goes on a trial, we would have to stay in Denver for weeks or months, to be followed up closely.  Cart-T cell treatments are still in trial for myeloma and Doug does not qualify.
None of the options offers a cure, just maybe a little extra time and with side effects. Dr. M said even if something worked, the results would not last long. He was very honest with us.

Doug and I have talked about stopping treatment someday. I told him I would support him whatever he decided to do, or not do.  But we didn't know this was the day.
Dr. M asked Doug "What is your goal now?" Doug said "To live without pain."  Dr. M asked him if this means he wants to stop treatment. Doug said "Yes". Dr. M said "I don't blame you".
Doug decided to put quality of life ahead of quantity. Dr. M assured Doug that with modern medicines any pain could be well controlled. Wise man that he is, he advised us to ask our local oncologist to arrange for us to meet the hospice team. That was unexpected but actually good advice.
We were emotional after all this.

We will have one more telehealth meeting with Dr. M on July 6, so he can answer any questions we may have. He highly recommended that we get the book "Being Mortal" by Atul Gawande. Doug and I are both reading it. We found it online at the library. It was also made into a PBS Frontline TV show in 2015. It is on YouTube.

We have always known that multiple myeloma is not curable. But up to now there have been many new drugs developed, so our journey was one of remission, relapse, try a new drug, hope for another remission. Doug has had a few good remissions - the longest one lasted 18 months. During remissions we had some 'normal' times when we could almost forget cancer. The worst time was when Doug was in ICU on a ventilator right after his stem cell transplant.
 Up and down - a roller coaster.

During this journey our faith in God has been growing. He is so faithful and always ready to listen. We have been blessed and God has drawn us ever closer to Him. We can't always see things from His perspective. All this time God has surrounded us with praying friends who have been such a comfort to us.

Doug has battled this cancer for almost 13 years and he is ready to rest now. His body is worn out. I think, as the chemo drugs work out of his body, that he will have more energy and feel better for a while.

More later.

Here are partial lyrics from the hymn My Lighthouse:

In my wrestling and in my doubts
In my failures You won't walk out
Your great love will lead me through
You are the peace in my troubled sea.

In the silence, You won't let go
In the questions, Your truth will hold
You are the peace in my troubled sea.

I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea. 

Not good news

This will be a short post.

Doug just got the results (on the patient portal) of the myeloma panel that was drawn June 11. 

 The Lambda light chains (cancer marker) have more than doubled since May. 

April was 29.0

May was 41.2

June is 92.6

Normal range is .5700 to 2.63

That means the Kyprolis is not working. 

We have not talked to either of the oncologists yet. 

We do have an appointment for tomorrow with the oncology NP who we like a lot. We could get in to see her faster than Dr. A the oncologist. 

We made the appointment so she can look at the lump on the side of Doug's head that has grown rapidly over the last couple of weeks. Doug had thought sure it was a cyst - so he didn't show it to me until it got big. 

There will be some kind of new plan - either add another drug to the Kyprolis or change the treatment altogether to something new. The last three treatments have not worked. 

We still have the telehealth (virtual) appointment with Dr Matous for this coming Monday. 

We are of course feeling down, but not shocked. Not much shocks us anymore. 

Love to all.

Quote: 

"We humans spend a good bit of our lives in places where it's too dark for knowledge and only the candle of faith can light our way."   W. Lee Warren M.D.

Reduced dose Kyprolis

On May 28 (cycle 2, day 1), Dr. M and Dr. A agreed to reduce the Kyprolis dose to 60 mg because of Doug's fatigue and edema. Ideally, he would be receiving 100 mg. How this reduced dose will affect things is unknown as of now. Doug still has fatigue and edema (worse on Kyprolis days) but these side effects are manageable at the lower dose.

Doug's myeloma panel that was done on May 14 showed a big jump in Lambda light chains from 29 mg/dL to 41.2. We are  hoping that was just because it was done not long after Doug started Kyprolis. He had a blood draw for another myeloma panel last Thursday but we don't know results yet.

The plasmacytoma lump has not grown - that is very good!

We have a Zoom visit with Dr. Matous in Denver scheduled for June 22. We are looking forward to that. The Zoom online visits are working out well for us.

Doug continues to have twice a week infusions. We actually look forward to seeing our favorite nurses.

Love to all.

Here is a selection from Jesus Calling by Sarah Young:

"Be still in the light of My Presence while I communicate Love to you. There is no force in the universe as powerful as My Love. You are constantly aware of limitations - your own and others'. But there is no limit to My Love; it fills all of space, time, and eternity. 

Now you see through a glass, darkly, but someday you will see Me face to Face. Then you will be able to experience fully how wide and long and high and deep is My Love for you. If you were to experience that now, you would be overwhelmed to the point of feeling crushed. But you have an eternity ahead of you, absolutely guaranteed, during which you can enjoy My Presence in unrestricted ecstasy. For now, the knowledge of My loving Presence is sufficient to carry you through each day."

For now we see through a glass, darkly; but then face to face: now I know in part; but then I shall know even as also I am known.  1 Corinthians 13:12

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep in the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God.  Ephesians 3:16-19

Final path report from Mayo

We just saw the final pathology report on the lump that was biopsied on May 15.
Mayo says it is a plasmacytoma! There was a question of possible lymphoma, which would be a second cancer, so this is the best of two possibilities.

Part of the Mayo report reads:

"The neoplastic cells are positive for CD38 and CD138 and contain monotypic cytoplasmic lambda immunoglobulin light chains." 

The daratumumab that Doug was on for 15 months, starting January 2019, targets CD38. That obviously was not working!

Dr. M, the Denver myeloma specialist, says the plasmacytoma was present but not visible yet when Doug began the Kyprolis. So rather than jump into radiation on the lump, we will wait and hope that it disappears with the Kyprolis treatment.

Doug's leg/feet swelling is a bit worse - noticeable but not too dramatic. It is one of the side effects of Kyprolis. We continue to keep an eye on it. 

The most common Kyprolis side effects are:

Low red blood cell count

Tiredness (fatigue)

Low platelets

Nausea

Fever

Trouble breathing

Diarrhea

Headache

Cough

Swelling of the lower legs or hands

So it could be worse! 

"This is the day the Lord has made. Let us be glad and rejoice in it."

Psalm 118:24

Love to all.

plasmacytoma vs. lymphoma?

The biopsy of the lump on Doug's right anterior chest wall (near the port) was done 5-15-20.
On 5-20-20 we got the pathology report from HRRMC. It said: "Favor soft tissue involvement by plasmacytoma, versus large B-cell lymphoma. Mayo pathology consult pending."  We were surprised to read that! Based on appearance and Doug's history of plasmacytomas, we, including the oncologist, were sure it is a plasmacytoma. We still do not have the final report from Mayo. The NP at the infusion clinic says it would be "very unlikely" to be lymphoma. We want to see that report!

When Doug first started the Kyprolis, Cycle 1, day 1 & 2, the protocol called for a reduced dose of 40 mg.
The next week, days 8 & 9, per protocol the dose was increased to 100 mg.
Then Doug had the weight gain and edema of his legs ankles and feet. So the following week, days 15 & 16, the oncologist reduced the dose back down to 40mg out of caution.
The next week was his rest week - no chemo - and he felt better with more energy. Both the Denver specialist and the local oncologist agreed that we need to get the dose back up.
So yesterday and today, cycle 2, days 1 & 2, the dose went up to 60 mg. We are watching closely for edema and weight gain. We'd like, if possible, to go up to 100 mg which is what it should be per protocol. But only if he can tolerate that dose.

Yesterday the nurse could not get the port to draw - meaning blood would not come out, but sterile saline would go in. That happens occasionally, and usually changing position, raising the arm, laying him way back in the chair, or other movement, will do it. Not this time. So Doug had to go to radiology for a 'dye study'. That showed the dye going into the port and going where it should go in the body. Good! Sometimes a small clot or fibrin sheath will form at the end of the catheter tip and act kind of like a one-way valve. The dye study showed it was safe to use the port for the chemo. We were glad of that. After yesterday's chemo was finished, the nurse injected a tiny bit of a drug (cathflow) that acts as a 'clot buster'. This morning it was sucked out, then the port was flushed and it it like new.

Yesterday Doug weighed 162, this morning 164. We will keep checking it as well as watching out for increased edema.

We both enjoyed Doug's week off treatment. He was able to walk around the loop with me and the dogs, and drive our new car that has all the new safety features.

We are depending on God for endurance, strength and peace. We appreciate all of you who pray for us!

This is one of my go-to Bible verses:

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

Plasmacytoma?

This morning as we were getting ready to leave for infusion, Doug noticed a bump just above his port. (On his chest). It was small, but it wasn't there yesterday. We told the nurse, who told the oncologist - and she came to see it; thought it looked suspicious. The oncologist called a surgeon who has her office just down the hall from oncology. The surgeon said she'd like to biopsy it. Luckily she had a spot open after Doug finished his Kyprolis infusion.
I was allowed to be in the room (in the surgeon's office) while she did an ultrasound and then biopsied the lump. When she got tissue out, she said it looks like a plasmacytoma to her. Of course it will take a few days to get the pathology report back because it will be sent out for an outside opinion.

In December of 2018 Doug had several plasmacytomas and needed three weeks of radiation in Edwards CO.
A plasmacytoma is a group of myeloma cancer cells that grow outside the usual area. Multiple Myeloma is a cancer of the plasma cells of the blood. The myeloma lives in the bone marrow and thus in the bones. Extramedullary plasmacytoma consists of cells that are aggressive and migrate to soft tissue. This is not a good thing. To have it happen while on a new drug is also not a good sign.

 We are thankful it was caught early and biopsied early. We hope Doug will not need radiation, but if he does, at least it is not winter like last time when we had to drive back and forth on wintry roads.

I like those WWII signs that say "Keep Calm and Carry On". That is what we will do.

Here is a quote I found that is appropriate:

"Father, I am here waiting for You. My heart and hands are open to Your purposes and plans for my life. Give me the patience I so desperately need and lead me in my waiting. Though my feelings may not be there just yet, I believe You are moving on my behalf right this minute, protecting, defending, preparing, providing. Give me grace to keep trusting in You in the face of the gale force winds of doubt that are blowing all around me. Anchor my heart in You. Amen"   Louie Giglio

Peripheral edema - Kyprolis cycle 1

On May 7 Doug had his first full strength dose of Kyprolis. His weight was good at 160.
All his lab work came back okay:
WBC    7.6
HGB     12.4
PLT       209
ANC     7.1
Creatinine   1.1
Sodium 136

The NP (nurse practitioner) came to see how he was doing. He told her 'no problems'.

The next day, Friday 5-8-20, he weighed in at 162. No big deal.
He had a full strength dose of Kyprolis with the usual fluids.
On Thursdays the lab work is done; on Fridays lab work is not done.

Friday evening at home, we noticed his leg swelling was a little worse than usual. We checked his weight - it was 165. Up 3 pounds since morning. He felt fine.
Saturday his weight was 166.2. His feet ankles and lower legs on both sides were puffy. He still felt fine, no other problems except fatigue. (For the medical folks - I checked and it was not pitting edema.)
Sunday his weight started to go down - 165.1
Monday he weighed 162.4 and the edema was quite a bit less.
Tuesday's weight was 161. Just the 'normal' swelling on left side.
I called to report all this so the doc would have a heads-up before Doug went to infusion today, May 14.

Today Doug weighed 159, a good number for him.   BP was 114/71.
His lab work was:
WBC 9.0
HGB 12.3
ANC  8.3
PLT   107
Creatinine 1.3
BUN     32
Sodium 134

Dr. A came to see Doug. Peripheral edema is one of the possible side effects of Kyprolis. But she was a little surprised the edema came back down so quickly. She made a phone call to Dr. Matous in Denver to get his opinion. Meanwhile she ordered an EKG to be done before infusion. That didn't show much. His heart sounded okay to her.
Dr. A told us she thought the Kyprolis dose needed to be lowered back down to the starting dose on days 1 and 2, which was 20 mg (calculated by a formula for his weight). Dr. Matous called her back and he agreed with Dr. A to go ahead with the lower dose and also cut his saline fluids in half for now.
He tolerated the infusion well, no drama.
Doug will go back tomorrow, Friday, and then he will be off for one week. Three weeks on, one week off.
When Doug resumes treatment on May 28, that will be the start of cycle 2. Dr. Matous wants Doug to get an intermediate Kyprolis dose; higher than he got today. He says if we have to keep the Kyprolis dose at the very low level, then he would probably need to add another drug to the mix. And he really would prefer not to do that.

We will continue to monitor Doug's weight and leg/feet swelling. Dr A says to call her on her cell phone if he has any more edema/weight gain.

Doug is also supposed to have another echocardiogram before cycle 2, to be compared with the baseline one he had before Kyprolis started.

We are aware there could be complications ahead, but we try not to focus on that.

Love to all.

Today's verse:
"God is your refuge, and his everlasting arms are under you."  
Deuteronomy 33:27

Kyprolis - 1st and 2nd infusions

Last Thursday April 30 Doug had his first Kyprolis infusion.
Cycle 1, day 1. Each cycle is 28 days.
He weighed 160 - very good. BP was 108/69.

After the nurse accessed his port, she drew blood to send to the lab. While we were waiting for results, she started 500 ml of sterile saline; this hydration will be given before each infusion, to help protect organs.
Doug still has to take 20 mg dexamethasone with every Kyprolis infusion.

The parameters to 'qualify' for Kyprolis infusion are a little different than for the daratumumab.
This is for the medical nerds out there:
ANC needs to be greater than 1500
HGB greater than 8.5
PLT greater than 100
Total bilirubin  less than 1.2
No signs or symptoms of any herpes or varicella virus infection
Serum glucose less than 200
BP less than 150/90
No signs or symptoms of cardiac dysfunction
No signs or symptoms of pulmonary toxicity
If any of these are not within limits, the oncologist will withhold treatment or adjust medications. Or in some cases adjust the parameters.

Doug had no reactions to the infusion. Yay! Some of the possible side effects will show up only over time.

All his blood work was good, except sodium was a little low. Nurse said eat more salt - I was surprised by that.
Here are the counts for day 1:
WBC   6.7
HGB    12.4
PLT      330
ANC    5.4
GLU    122
CREAT  1.1
Magnesium   2.0
Sodium   134

The oncology pharmacist came down to go over the drugs with Doug. She looks much too young to have a doctorate in pharmacology! She's cute and she and Doug have a nice relationship developing. I can't stress enough how much we enjoy all the professionals in the infusion clinic.

It feels good to have the first two Kyprolis infusions over with. Doug is doing well. In the late afternoon, after we were home for a couple hours, the nurse called to make sure Doug was doing okay. An hour later the pharmacist called too!
Doug has slight nausea and of course the ever-present fatigue.

Friday, day 2, no blood work was needed. Doug just had the fluids and then Kyprolis. Kyprolis infusion is only 30 minutes. Much faster than the dara was.

The Kyprolis dose was reduced for the first two days. Next week it will be higher.

Thank you to all the people who are holding us up in prayer!
Love to all.

Kyprolis will start soon

Doug had his echocardiogram  and the results are good. So he is on track to start the Kyprolis/dex.
His first infusion is scheduled for Thursday April 30. He will have another one the day after. The infusion clinic has five hours reserved for him. The actual infusion will take only 30 minutes, but a lot of things have to happen before that. The nurse will access his port using sterile technique and draw blood for testing. He has to be hydrated before the Kyprolis is given, to protect his kidneys and other organs. It takes time for the fluids to drip in through the port.
 Once results come back from the lab and the oncologist gives the okay, the speciality pharmacy will mix the drug. Doug will be monitored carefully in case he has a reaction to the drug. After the infusion he won't be allowed to leave until the nurse/doc are sure he isn't having a late reaction. Over time everything will probably go more quickly.

When Doug had his echo, I was not allowed to go into the hospital. I had to wait in the car; this is due to the Covid-19 precautions. I understand completely.
We checked, and I will be allowed to stay with Doug in the infusion clinic, as long as I do not leave and come back. I will have my iPad to keep me busy.

Doug will have Kyprolis every Thursday and Friday. Thankfully it only takes 30 minutes travel time to get to the hospital.
We are trying not to focus on the cancer treatment. It takes a lot of prayer to keep our eyes on Jesus!

This is one of the Bible verses that helps me:
"I know the Lord is always with me. I will not be shaken, for He is right beside me."  Psalm 16:8

Love to all.

Stop Dara/Pom

Back in July Dr. Matous, the Denver specialist, said that if Doug's Lambda light chains get to 300mg/L he will change treatment. They have been slowly rising since then but the latest myeloma panel showed a big jump from 171 to 290. Dr. A, the oncologist at our local hospital has talked to Dr. M and they agree that Doug should stop the daratumumab/pomalyst/dex combo.
The infusion that was scheduled for today was cancelled.

Dr. Matous has told us in the past that if the dara/pom fails, he would go to Kyprolis and dexamethasone. Kyprolis, also known as carfilzomib, is a proteasome inhibitor. It's been around for a few years. It is administered as an infusion. It has a long list of possible side effects, including heart complications. Doug had heart failure (temporary) when he had his stem cell transplant in 2009, but his heart recovered very well. But since he has a history, he has to have an echocardiogram done before he can start Kyprolis. Dr A called and told us that. We are waiting to get that scheduled.

We got a call from Denver today telling us that Doug will have a video call March 27 with Dr. Matous.

This is not good news, but it is not a surprise to us. It is part of the roller coaster that is living with Multiple Myeloma. We spend a lot of time waiting for the other shoe to drop but we do not focus on that. One day at a time.

That's all we know for now.

Here is a quote from Jesus Calling, one of my favorite devotionals.

"I am training you in steadiness. Too many things interrupt your awareness of Me. I know that you live in a world of sight and sound, but you must not be a slave to those stimuli. Awareness of Me can continue in all circumstances, no matter what happens. This is the steadiness I desire for you. 
Don't let unexpected events throw you off course. Rather, respond calmly and confidently, remembering that I am with you. As soon as something grabs your attention, talk with Me about it. This is how I live in you and work through you. This is the way of Peace. 

Love to all.

Hanging in there

Doug had his infusion yesterday. This time the 'gatekeeper' nurse was just inside the entrance; two weeks ago she was outside. This time in addition to just asking us questions, she took temperatures. A good idea. Then she gave us a sticker to wear while in the building. And told us to use the hand sanitizer.

Doug weighed 158, down two pounds but a decent weight. His labs were good:
ANC was 2.2    Last time it was .9 so that's a big improvement.
WBC     3.8
HGB     13.0
PLT       216
 His nurse drew blood for the myeloma panel that checks his cancer markers. We should get that result in a week or so.

The infusion clinic sure looks different with all the curtains pulled closed. We used to be able to talk with other patients, although at a distance. Now we can't even wave hello. The nurses are still their usual calm, comforting, cheerful, capable selves.

I was talking with Doug's nurse about the public wearing masks and I said I was going to start that when in the grocery store. She gave me a mask - one of the volunteers had made and donated a pile. Of course they are not medical grade but I think it's a good idea for these reasons:
It keeps people aware to keep away. If it makes me look sick maybe they will stand farther away!
It reminds me not to touch my face when out.
It might be some protection to others if I cough or sneeze. Although I will still sneeze into my elbow.
The downside to wearing a mask - it might give people a false sense of protection.

Our Colorado governor just put out a message asking the public to wear face coverings in public. Good move!

Our church is doing a good job of keeping us connected while we can't physically go to church.
On Sundays the service is live streamed on YouTube. Last week our pastor said he wasn't preaching to an empty church. The camera panned around the seating - there were big cardboard cutouts of famous people and cartoon people in the seats. Funny! And now we are getting daily devotionals from our pastors emailed out. We know we can call the church if we need anything.
If anyone wants to check YouTube, search for Clearview Community Church.

Verse of the day:
"May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ."   2Thessalonians 3:5

Love to all.