Where’s the Joy?

Posted on February 27, 2025 by tricialathrop

February 25

I came today expecting an easy day. The pain meds worked yesterday…

On the 23rd they moved Norm out of ICU to the PCU…one step away from ICU, still a lot of monitoring, but not as intensive as the ICU. Here I have a somewhat comfortable chair, at least it reclines. There’s a little more space for personal items.

The move was a bit of an adjustment, but Norm got comfortable as he could. Improved, but a long way to go.

Yesterday, I got a text from Norm at 4:30 with three crying emojis. I hurried to get ready and went to the hospital. I found him in a lot of pain and very fearful. He kept saying he wanted the Lord to go ahead and take him so he could walk in the garden with God…his means of trying to cope with the pain he was experiencing.

The nurse asked if I had considered end of life comfort care…and yes with all the ups and downs that is something that comes to mind. But at this point, all the evidence says that all the treatments are working…so at this time, no, hospice not an option.

A new hospitalist (new floor) came in and made some comment that set Norm off. He thought this doctor had not read beyond the prior 12 hours and had no idea of his history.

So, for the rest of the day we had all kinds of doctors coming in. The most effective was Dr Jackson with palliative care…my sister emphasizes, not the end of life palliative care. She realized that what he needed was pain management to give his lungs time to heal.

They did some pain management and the rest of the day was great.

Back to today, I had plans for lunch with friends, a much needed break…but the pain management did not go far enough and Norm had severe pain that was not being addressed. He lashed out at everyone and I tried to comfort him…hard to do when someone is in intense pain.

So a readjustment and Norm settled down. He apologized to all he had yelled at. The ones who have been there awhile understood pain anger, but the poor new nurse…it kind of shook her, but she gained some experience and insight as she watched the older nurses handle Norm with kindness and firmness.

Another roller coaster day…I’m feeling stretched to the limit.

Where’s the joy?

I am thankful that the people are caring for Norm and giving him a good chance to recover.

I pray for the support staff who work in the background making sure the nurses and doctors have the freedom to work with the patients in a clean and safe environment.

I rejoice that God remains faithful.

For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I shall not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all time, O people; pour out your heart before him; God is a refuge for us. Psalm 62:5-8

Where’s the joy? It’s in the faithful people helping others to get better when they are critically ill.

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Where’s the Joy?

Posted on February 23, 2025 by tricialathrop

February 21

I’m getting mixed messages. Oncologist and infectious disease doctors see improvement–ICU and Respiratory doctors see the need for oxygen increasing. I see him struggling to breath and constantly talking about him dying in the hospital.

He can’t leave ICU until his need for oxygen reduces. If he were to go on hospice, he can’t go home until there is a significant drop in the amount of oxygen he needs.

He seems more like his old self most of the day, but he still gets very angry and frustrated at all that is going on around him. He no longer asks to go home, he’s resigned to hospital life for now…doesn’t like it but is enduring it.

Everyone is flummoxed. He’s not responding in any expected way.

What is God going to do? Heal him and have him continue on earth with quite a testimony? Or take him to walk with Him in the heavenly garden.

Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation. Habakkuk 3:17-18

I don’t know, yet I will trust in the Lord.

Where’s the joy?

I am thankful that Norm is getting great care.

I pray for his heart to be encouraged.

I rejoice that though I watch everything falling apart, I can take joy in the God of my salvation.

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Where’s the Joy?

Posted on February 20, 2025 by tricialathrop

February 20

Before I begin what I wrote earlier this morning, I want you to know that things look better for Norm today. I’m going ahead to share this because I think that as a caregiver, we all reach a point of frustration where we feel that it may never get better.

When does one call it quits? Ten days ago I took Norm to the hospital with a 103 degree fever and a decreasing ability to walk. He was doing so well on chemo, it was a fast fall from doing well to being on his deathbed.

Yesterday, the doctors think they have found the cause and have a treatment…after 10 days of this is possibly it and treatments not working, I’m a bit skeptical. 10 days of hope, followed by that wasn’t it and hopes dashed. I’m weary of the roller coaster of emotions.

Norm’s pain has increased, it was a 6, now he’s saying it’s an 8. They are giving him pain meds every few hours and he is counting the minutes until he can get a new med.

When I left yesterday, I planned to speak to the nurses about the tube. Would it decrease his anxiety and agitation since he would be sedated to use the tube? Would it allow him to rest? Would it help with the pain while the new meds do their job on the fungal pneumonia?

But then, am I really thinking more about him or about me? I’m tired.

I’m tired of seeing him in such pain and not able to do anything for him.

I’m tired of him griping at me when I don’t have the food, drink or other item that he must have right now.

I’m tired of the daily drive to the hospital where I sit in an uncomfortable chair waiting for him to demand something from me.

I’m frustrated that I cannot do what I want to do.

Everyone says take care of yourself. But when someone you love is suffering and dying, one can’t take care of oneself…you just can’t.

What is best for Norm? His brother and sister said that after I left, they were able to have some good conversation and he seemed to improve. He definitely does better with others in the room.

Last night I got a text from Norm saying that the oxygen device fell off and he felt like he was suffocating. It was scary for him. The nurse was trying to get it back on, but he was agitated and she kept telling him to calm down, tough to do when you can’t breath.

At this point I have to trust the doctors and nurses to know when he needs to have the tube. They’ve dealt with people in need before, they know what to do and when it needs to happen.

If the new meds don’t work, then we revisit the giving of comfort care. I will take him home until he goes to his permanent home to walk with the God in the heavenly garden.

Blessed is the one whose transgression is forgiven, whose sin is covered.

Blessed is the man against whom the Lord counts no iniquity, and in whose spirit there is no deceit.

For when I kept silent, my bones wasted away through my groaning all day long.

For day and night your hand was heavy upon me; my strength was dried up as by the heat of summer. Selah

I acknowledged my sin to you, and I did not cover my iniquity; I said, “I will confess my transgressions to the Lord,” and you forgave the iniquity of my sin. Selah.

Therefore let everyone who is godly offer prayer to you at a time when you may be found; surely in the rush of great waters, they shall not reach him.

You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah

I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.

Be not like a horse or a mule, without understanding, which must be curbed with bit and bridle, or it will not stay near you.

Many are the sorrows of the wicked, but steadfast love surrounds the one who trusts in the Lord.

Be glad in the Lord, and rejoice, O righteous, and shout for joy, all you upright in heart! Psalm 32

Where’s the Joy?

I am thankful Norm is in a facility that gives him the best chance for not only survival, but also restoration to a good quality of life.

I pray for wisdom to make right choices, courage to face the uncertain future, strength to endure and hope that rests in the Lord God Almighty alone.

I rejoice that Norm knows the saving grace of Jesus Christ and that his future is secure in Christ.

Where’s the joy? My joy rests in the Lord.

For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I shall not be shaken.

On God rests my salvation and my glory; my mighty rock, my refuge is God.

Trust in him at all times, O people; pour out your heart before him; God is a refuge for us. Psalm 62:5-8

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Where’s the Joy?

Posted on February 19, 2025 by tricialathrop

February 18

It’s been a rough few days. Norm continues to ride the roller coaster between going to die and going to live.

My plan was to take him home yesterday. Dr Cutrer said that it would be morally and medically unethical to send him home. BP still iffy, but his oxygen levels had dropped so much that there was no way to give him the oxygen he needed. And still, we wait for answers.

The question is what really is the cause…there are all kinds of fungus. Cultures still growing.

Norm’s brother and sister came, they helped to bolster his spirit, I think the pain meds helped to return Norm to his wisecracking self.I heard Norm laugh multiple times, and he was nice to the nurses.

I’ve decided to tell Norm that he is free to stop the fight. If he wants to live, which is what I want, he needs to do it for himself, not so that he’s not a disappointment. I don’t know if he heard me, but he is my hero….very supportive and encouraging for all my endeavors.

This writing was interrupted. Norm came back from his MRI, in pain (not from the MRI), and agitated. He kept saying over and over, “Oh Lord, you are my God, and I will ever praise you.”

He was in a lot of pain, his oxygen and BP levels were sinking. The nurses put a mask on him and told him to continue the chant, just in his head because talking caused his oxygen level to reduce.

I sang the song to him as he tried to focus on breathing. Song after song, but the oxygen level stayed too low. The nurses looked very concerned.

Suddenly about ten people entered the room, in a rush and began to work with Norm. Dr Cutrer took us out into the hall and asked us what had happened. Then he spoke to one of the nurses. Norm would need to go to ICU and possibly get a breathing tube.

I spoke to Norm about the tube, he was concerned that it would be the rest of his life. I assured him only a few days, giving the doctors a few more days to find the treatment that would get rid of the fevers, and allow him to continue his cancer treatment.

They rushed him to ICU, where he got agitated again, he was confused and I wasn’t allowed in the room while they got him hooked up to monitors and a breathing apparatus…not an intubation.

They got him to be stable…but we still don’t know what is going to happen. It’s scary. Will he recover? Will we have another miracle? Or will he continue to decline? Here we are again, waiting to see what happens, waiting to know if there are any answers to his illness, waiting for whatever the Lord will do.

Where’s the joy? Another day when it is not so clear.

I am thankful for the care and concern shown by the nurses and doctors at each step of this journey.

I pray for a friend who is dealing with pneumonia, and had to be transferred to a hospital where she may have an operation.

I rejoice that God remains faithful, even when it seems he is not there.

The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. Lamentations 3:22-23

I tried to load the song from Michael W Smith, “Step by Step”. Perhaps you can find it on YouTube.

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Where’s the Joy?

Posted on February 19, 2025 by tricialathrop

February 15

What a roller coaster!

I came this morning, all set to take Norm home. They can’t find the problem, he’s upset being in the hospital, he just wanted to go home.

Hospitalist said the bronchial biopsy revealed a fungus-unknown whether mold or yeast. Cultures would tell.

Norm’s BP dropped overnight. The doctors thought he might be in septic shock. If his BP didn’t go up, a trip to ICU for several days.

Norm is understandably frustrated. His anguish is apparent in his tears and wails. I promised him I would take him home Monday if they had not found anything. I said in the afternoon, he said 9 am.

Psych came to talk to him. They picked the right doctor, one who also had an engineering degree, fit very well with Norm’s mind. He summed up Norm’s issues. It helped Norm to speak of some of his fears. One big one, he doesn’t want me to have to deal with him as an invalid, like his grandmother who abused him.

Someone came from physical therapy and gave him a list of exercises to do. He’s in a better frame of mind. He feels that the staff is listening to him.

His brother and sister are coming in this week, they will also help with the attitude. It will be good for them to see him and show him support and love.

Right now I’m taking a breather from the emotional roller coaster ride, just some gentle hills before the climb and drop. No immediate threat of death, and his self-diagnosis of being an invalid debunked by physical therapy. He’s still strong, just no endurance.

I have renewed hope.

Where’s the joy?

I am thankful that two specialists were able to encourage Norm today.

I pray for wisdom for the doctors as they make decisions about Norm’s treatment moving forward.

I rejoice in these moments of reprieve when I can get a little rest.

Where’s the joy? Family and friends who support and encourage me.

Weeping may endure for the night, but joy comes in the morning. Psalm 30:5

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Where’s the Joy?

Posted on February 15, 2025 by tricialathrop

February 14

Valentine’s Day, Norm remains in the hospital.

It’s been a rough two days.

I’m dealing with anger, frustration, and despair as Norm seems to choose death. He told me that he is sorry that he can’t be the Hallmark hero who fights and wins against impossible odds.

Yesterday, I told Norm that I was angry at him. I said that it wasn’t the cancer that would kill him, but his refusal to eat. I was so frustrated as he talked about how malnourished he was, but still would not eat. We brought in foods he liked, foods he requested, but he would only take a bite or two and he was done.

After I yelled at him, he ate more…but today, not so much.

The frustration, he only had three more chemo treatments to go. He was doing so well until the fever hit…then he sank fast.

I knew being a care giver would be hard. I knew that the cancer was in an advanced stage when the doctors finally identified it. But I didn’t understand how difficult for Norm with the cancer and for me as a caregiver. This goes beyond all expectations.

I’m not proud of getting angry. How could a believer who trusts in the Lord get so upset when things go differently than expected?

How could I yell at Norm in his sick and weakened state?f

I had no idea it would be this difficult. If you are a caregiver, I hope you have a support group. This is not a path to walk alone. A caregiver is everything to an ill, elderly or disabled person. It takes its toll, mentally, physically, and spiritually.

I feel like I’m hovering over an abyss holding onto a frayed knot by a single strand.

Where’s the joy?

I am thankful for the times I have had and hope to have with the love of my life. Norm loves the Lord, his family and his friends and wants all to know that he’s not giving up.

I pray for the strength and courage to face what lies ahead. I pray for other caregivers who struggle to keep hope day after day. I pray for support when it is all just too much to bear.

I rejoice for the faithfulness of God revealed in the Scripture through broken and failing humans. Humans fail, God remains faithful.

Where’s the joy? Where indeed? Lord I believe, help my unbelief.

I’m going to share an article I wrote a few years ago. I think it fits what is happening. You can find the narrative in 1 Kings 18-19.

My husband Norm and I enjoyed a morning hike, astounded by the rock formations in Zion National Park. Tired and hungry, we rode the shuttle back to the hotel.

As we listened to peaceful music, we heard the whimpering whine of a weary tot. I looked at Norm, “Someone needs a nap.” Soon the whine became a wail, “I’m hungry!” 

The lady behind me whispered, “Someone needs a snack and a nap.”

The mother tried to distract him, but the boy continued to wail. 

Sometimes I feel like that kid. Even when the activity is for the Lord or one for fun, weariness hits and I begin to whine. “Why am I doing this? Who even cares?”

First Kings 19 relates the narrative of Elijah after his victory on Mt. Carmel. This prophet  proclaimed the Word of the Lord, performed wonderful miracles, took on 400 prophets of Baal, proved to all Israel that God alone was God.

Queen Jezebel threatened, “I’m going to kill Elijah.” 

Elijah fled in fear of his life. The man who called down the power of the Almighty God, trembled before a woman. He told the Lord he was done and ready to die.

God didn’t rebuke him. He provided a safe place where Elijah slept in peace. Angels brought food. God gave Elijah a snack and a nap.

 Sometimes we get busy doing things for the Lord…good things…great things.  But we are human and we grow weary. God knows we are just dust. We can trust him to provide for our needs without condemnation. He gives us a snack and a nap.

He gives strength to the weary, and to him who lacks might He increases power.

Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Isaiah 40:29–31 NASB.

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Where’s the Joy?

Posted on February 12, 2025 by tricialathrop

February 11

It has been a roller coaster kind of week. We waver between Norm behaving as if he will die in a few days, to great reports about what is happening with him.

He continues to have a fever with unknown origin…I guess not uncommon with chemo patients. They’ve ruled out a lot of things. Norm is not presenting symptoms to identify with any one thing. No headaches, no nausea, he just has overall body aches and weakness, along with the fever. But each day, the fever stays lower longer and doesn’t spike as high.

They’ve done multiple tests and scans. What we know, the cancer has not returned. The scans show that the chemo is wiping out the cancer. There is no longer any sign of it in the brain. We Thank God for that.

Norm is tired of fighting. He says that he is broken mentally, physically, and spiritually. This morning, before we got news from the doctors, he wanted to go home and die. He mourns the death of the man he was.

He always wants to know, so he can act. It’s been almost a week in the hospital, and still no answers. Well, a lot of answers as to what it is not, just not what it is.

He wants to come home, but he needs to be where he can get treated to get stronger. He is getting stronger. But he is frustrated.

As I said at the beginning of this post, we are on a roller coaster. He’s up, he’s down…we’re thrown for another loop…and never coming to rest.

Where’s the joy? Another tough day of uncertainty sprinkled with hope.

I am thankful for my family. My kids spent the day with Norm so I could have some regrouping time.

I pray for Norm, that he will regain physical stamina, spiritual wisdom, and emotional stability.

I rejoice that God continues to hold Norm in his hand, regardless of the difficulty and lack of knowledge.

Where’s the joy? God remains faithful, even when I do not.

Remember my affliction and my wanderings, the wormwood and the gall! My soul continually remembers it and is bowed down within me.

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.

“The Lord is my portion,” says my soul, “therefore I will hope in Him.”

The Lord is good to those who wait for him, to the soul who seeks Him. It is good that one should wait quietly for the salvation of the Lord. Lamentations 3:19-26

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Where’s the Joy?

Posted on February 12, 2025 by tricialathrop

February 9

The last two days have been awful. Saturday night, Jenn and I returned to the house to get some rest before returning to the hospital the next morning. I got a text from Norm complaining about the staff, said he was refusing to do what they asked until he talked to a doctor. He thought his symptoms required a visit to ICU and how could these so called professionals not see it.

His mind is under attack by an unknown illness. He has no control over the anger, and when he gets an idea in his head, he will not be dissuaded. The last week he’s been yelling at me, but now he was yelling at the nurses.

I know and the nurses know that this is the disease speaking. One of the nurses commented on his prior behavior on the floor, they knew this was not the way my husband would react. The nurses are used to dealing with cancer patients who are in life changing situations. Sometimes the cancer does a number on the brain, sometimes the treatment can cause the emotional shifts, sometimes an infection will invade an already compromised body and wreak havoc.

Jenn, who has a way with talking to upset people, calmed him down. She helped restore him to some rationality, but he was still angry, even though he felt as if someone heard.

This has been tough on Norm. There is fear of losing control. Norm never used drugs or drank alcohol because he wanted his mind and emotions in tact, he did not want to lose control. Yet, here he is…hearing himself be hateful, but unable to stop.

Nine months ago he was hiking 10-12 miles per hike. When this started, there was a fear he would never hike again.

Out west, he enjoyed driving us in an OHV all over the San Juan Mountains. It was scary at times and required skill and full awareness.

In August we spent a week watching the grands, going to the park, playing, enjoying one another’s company. They love playing with their Poppop, who throws himself totally into their games. Due to the illness, we have not seen them since, except on FaceTime.

Norm loves to do woodworking, his Covid hobby. He is in the process of building a bed for his grandson Sawyer. Partially finished, it sits in the garage.

He had plans to go to Yellowstone for two weeks to look for wolves to photograph. We had plans to go to the Northeast and revisit some of our favorite places when the leaves were in their autumn peak. We had plans to take the Viking River Cruise from Amsterdam to Budapest in the spring.

We’ve made some plans to celebrate his survival. A Disney cruise in April, a trip to Yellowstone with some family and friends in the fall, and another trip to visit the cathedrals in France. All on hold at the moment, but not cancelled.

Wherever we go, and on Norm’s hiking trips, he takes award winning photographs…he took second place in the National Parks photo contest. He has been to all the National Parks in the continental US, as well as some in Alaska and all in Hawaii. He had planned a trip to Alaska in 2025 to get the remaining parks there…not happening this year. If he recovers, maybe next year.

His favorite things, family…especially the grands Sierra and Sawyer, debating with his friends, hiking, photography, word working, and having deep thoughts…all are suffering because of the cancer and now diminished because of whatever is happening in his brain.

One day while I held his hand, he had a thought. All that made his life worthwhile had been stripped away except love. God loves him. I love him. His family loves him. His friends love him. People he has never met show their love by praying for his healing.

He decided at that time, love was enough.

Where’s the joy?

I am thankful that Norm knows he is loved. He’s a little fuzzy on that, but he sees his family staying by his side and knows that people are praying.

I pray for those living without the knowledge of love, especially the love that God has for them. God loves each one so much that he sent Jesus Christ to die on the cross in payment of their sin so that they could come to know God as a loving Father.

I rejoice that we continue to hope in spite of the circumstances.

Where’s the joy? The joy is in the assurance of God’s love in our lives. No matter what we have done, He loves us. No matter how far we run away from him, He loves us. No matter what we see happening around us, God loves us with a love that is deeper and purer than anyone on earth can give.

For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God. John 3:16-18

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Where’s the Joy?

Posted on February 11, 2025 by tricialathrop

February 8

Still at the hospital. No answers.

My oldest daughter is here with me. My children have been great about coming in for Norm’s treatments. This weekend, he is here for an as yet unknown infection. Chemo is not happening, we are waiting to see when it can resume.

Meanwhile, we wait. Norm seems to be improving physically, not so much mentally. He’s not hearing voices, but definitely a misperception of reality. For instance, today he is positive he has bird flu from his visit to Asia 20 years ago, and doesn’t understand why the doctors don’t test for it.

It’s tough to watch him suffer and be able to offer no consolation. Nothing works, he’s just in a miserable place.

We pray. We wait. We pray while we wait. Others also pray while we wait.

It all comes back to trust. I trust God to do the best for him. I hope God will totally heal him. I know God will do/allow what is best for him.

Now faith is the assurance of things hoped for, the conviction of things not seen. For by it the people of old received their commendation. Hebrews 11:1

Where’s the joy?

I am thankful for my children who are here for Norm and me without complaint, helping us to navigate this path.

I pray for wisdom and strength for the people who care for Norm in the hospital and in the outpatient center.

I rejoice in the Heavenly Father who is unseen and yet sees all.

Where’s the joy? Standing on the promises that God has made to us through Jesus Christ the Lord.

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Where’s the Joy?

Posted on February 8, 2025 by tricialathrop

So yesterday, Norm began the day walking with a cane, by noon he needed a walker…and that was unsteady. At 3, he began to run a 103 degree fever. I had to have help getting him into a wheelchair to get him to the hospital. Thank you Mike.

With the emergency department completely full and Norm immune compromised, we were able to get him into a processing room. They did a lot of tests and took some blood cultures to figure out what is going on.

Most troubling is the attitude change, back to the anger…not only at me but at all the nurses trying to take care of him. I was so happy when the chemo seemed to be working to have my husband back, with a great sense of humor…this man with this sickness…he’s just angry.

Now, we are in the cancer ward. While we don’t know the cause of the fever, all the contagious possibilities have been ruled out. No covid, no RSV, no flu.

Still angry. I can’t imagine the thoughts going through his mind. He has to be confused, everything was going well and now he cannot take care of himself. He can’t even sit up by himself, let alone walk.

I try to give him the grace he needs in order for him to vent his frustration, but there comes a point where I need to step away and regroup.

I have to ask myself, how would I behave in a similar situation? I’m not sure. The anger seems to be related to the cancer…so he can’t help that.

I know of a woman who could not live with her husband because he threatened her life, he could live with his son, but she was in danger. I can’t imagine.

Where’s the joy?

I am thankful we live near a leading edge health care facility, UT staff have been great.

I pray that the Lord will continue to give me grace to extend to Norm as he fights this awful disease.

I rejoice that we have been able to get Norm in to someone who can give him the help he needs.

Where’s the joy? Though the road is hard and has a lot of bumps, God continues to provide for all our needs.

Rejoice in the Lord always; again I will say rejoice.

Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

And the peace of god, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

Philippians 4:4-8

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