James 5: 4 Behold, the wages of the laborers who mowed your fields, which you kept back by fraud, cry out; and the cries of the harvesters have reached the ears of the Lord of hosts.
James cries out against the oppressors. They have taken advantage of their fellow man, and God knows it. Justice is coming. It also strikes me that Job is cited for steadfastness.
If James is right, so many have so much to answer for. Our world is full of people who love as described here, taking advantage of others to enrich themselves. I know that I earned my living honestly, but I never know if I have done enough. I am, in fact, sure that I have not. Good thing God is merciful.
Prayer: Lord, make me a better Christian. Show me how to best serve You. Let me know if I ever towards indifference.
Amen
Sunday, July 21, 2019
Monday, April 1, 2019
Elaine's first day of work
April 1, 2019
At first, it seemed like we were in an elaborate April Fool's prank, but this afternoon Elaine has finally resumed work. She did try to work late in August after her hospitalization, but it has been 7 months of no work. The day of the week was irrelevant in our world, since we don't watch network television or sports. The weekend meant a different traffic pattern if we ventured out. It's strange to see life in those terms returning to a day off, lunch break, back to work kind of schedule. It's good, of course, because it leads to a fullness of life that Elaine has been without.
I remember my uncertainty about her life without work. I knew that most of the contact she had with others was through work. Even her online social life centered on a pair of co-workers. I worried that she would become depressed without the buzz of activity centered on her job.
Seven months later, I guess I needn't have worried. She went many days, maybe even a week here or there, without speaking to any human besides me. She texted and messaged, and she posted to Facebook and Instagram. That seemed to be okay by her.
She had a Recovery Coach through her insurance, and she worked with her in a weekly phone session to complete exercises designed to keep her focused and prepared to return to employment and a full life after disability. It was not specifically for cancer patients, so they worked together to make it meaningful. Through this, Elaine did complete some home improvement projects which have made her bedroom and office more enjoyable places to spend time. They also made her focus and take control.
Control was an issue. At first, Elaine was too sick to care. She had been forcing herself to go through the motions, but the signs of neglect were apparent in our house. She had even started ordering home delivery of microwavable meals. The boxes and empty plastic trays were piled on top of the stove just under the microwave. It had been too much effort to walk across the kitchen to the trash can. She never dreamed that she would take an ambulance to the hospital, and that I would walk in ankle deep pet hair to get to the kitchen. The day she was released from the hospital was the day I found a warning tag on our doorknob that I would be fined if I didn't mow the grass immediately. She neglected to pay for the water, so it was shut off and reinstated after a night without it. That's not fun when you are throwing up regularly.
Cancer controlled Elaine, so it became my job to keep the household going. Elaine began this journey as a very sick woman who could do little besides sleeping or sitting in her recliner. She was very weak and could eat only a few bites or even drink only a couple of swallows of water. She was prone to motion sickness for the first time in her life. We traveled to doctor's appointments and medical procedures only. I kept track of those, and I still drive everywhere. Elaine tires so easily.
As her spleen shrunk, Elaine became more physically comfortable. She could eat and drink as she liked, and she began to gain, rather than lose, weight between appointments. The motion sickness went away. Elaine has had 2 root canal procedures while on chemo, and her improved dental health has helped too. As she improved in these ways, however, the side effects of the chemo increased.
Elaine lost enough hair that she eventually went for a buzz cut. She began to wear hats and wigs (the party store kind in bright colors) when we went out. We were very conscious of the need to avoid infectious diseases, so we rarely went to crowded places. I even did all the grocery shopping. But we are fortunate to live in Florida, where winter means a few isolated 3 day cold weather events but with the compensation of hundreds of thousands of migrating birds to see from your car. Elaine and I, sometimes with her dad when he was in, traveled the back roads within an hour or our house, looking for opportunities to use her new camera for some more nature shots.
Elaine also took up loom knitting. Every member of our family received some knitted item, a hat or a scarf before that wore itself out. She began to make headbands and fascinators more recently. The glue gun sometimes seems an extension of her right arm! Elaine has read extensively since elementary school, but chemo brain left her unable to focus on fiction, so these craft projects have occupied many hours. We also enjoy board games, and she plays a phone game too.
Fatigue is Elaine's main medical complaint these days, along with stomach issues. It has been 12 days since her last chemo, and I am hoping that she will notice these side effects fading away as time passes. She has a CT scan tomorrow, and we expect that it will be clear and she won't see the oncologist again for three months. We will be pleased not to have the hour long drive nor any of the hospital-related details like parking lots and waiting rooms, blood draws and tests, traffic and empty gas tanks. We look forward to travel and home improvement projects that we can afford, as income returns to normal. Elaine and I look forward to long hikes and swimming in the springs and ocean when I return as a snowbird in the fall. Mostly we look forward to continued remission until the glorious day Dr. Chew tells us that Elaine is cured.
We have been blessed in so many ways. First we had each other and Ron. We have formed a posse for sure. Ron was in touch daily, even when he was in WV. He stayed with Elaine during two of my three short trips to see my new granddaughter, making that possible. When he was here, he was the guy in charge of keeping spirits up. We could count on him to get a smile from Elaine on even the darkest days.Our little family is close in a way we weren't before going through this together.
We have been blessed by so many family members and friends too. Those who took the time to visit are especially appreciated, as we are not located very near anyone we know well. Those who drove out of their ways, or who flew in for a time, will always be remembered. We appreciated the calls and messages too. And the cards....so many cards, even a few with a special monetary donation which helped Elaine get a bedroom tv for those very bad days.
The blessings were material as well. Elaine has great insurance, and the co-pays are minimal. Her disability pay and our ability to modify her rent payment has meant that she hasn't had to go into debt or on a search for providers who accept Medicaid. The house we share in Florida meant that we have been comfortably in our own home, not that I had to sleep on a sofa or that we had to share a bathroom. We have had reliable transportation and a beautiful neighborhood.
If your world is rocked by the news that you need an oncologist, it's a blessing to hear that your particular cancer is Hodgkin lymphoma, with its excellent prognosis, and that it's not in your bone marrow. There was no surgery to remove tumors, and there will be no need for radiation. Twelve chemo treatments were a lot, but it doesn't seem that way to the man I met in the oncology department who was beginning a third round of chemo with his wife, beginning in 2013.
The ride through Cancerland has been bumpy! This mom is more than ready to shed the role of caretaker and to return to her home in the WV hills. She's also grateful that it was possible for her to be present during the trip, but she wants to see her daughter growing stronger and more capable. Then she can get busy spoiling her sweet granddaughter in WV.
At first, it seemed like we were in an elaborate April Fool's prank, but this afternoon Elaine has finally resumed work. She did try to work late in August after her hospitalization, but it has been 7 months of no work. The day of the week was irrelevant in our world, since we don't watch network television or sports. The weekend meant a different traffic pattern if we ventured out. It's strange to see life in those terms returning to a day off, lunch break, back to work kind of schedule. It's good, of course, because it leads to a fullness of life that Elaine has been without.
I remember my uncertainty about her life without work. I knew that most of the contact she had with others was through work. Even her online social life centered on a pair of co-workers. I worried that she would become depressed without the buzz of activity centered on her job.
Seven months later, I guess I needn't have worried. She went many days, maybe even a week here or there, without speaking to any human besides me. She texted and messaged, and she posted to Facebook and Instagram. That seemed to be okay by her.
She had a Recovery Coach through her insurance, and she worked with her in a weekly phone session to complete exercises designed to keep her focused and prepared to return to employment and a full life after disability. It was not specifically for cancer patients, so they worked together to make it meaningful. Through this, Elaine did complete some home improvement projects which have made her bedroom and office more enjoyable places to spend time. They also made her focus and take control.
Control was an issue. At first, Elaine was too sick to care. She had been forcing herself to go through the motions, but the signs of neglect were apparent in our house. She had even started ordering home delivery of microwavable meals. The boxes and empty plastic trays were piled on top of the stove just under the microwave. It had been too much effort to walk across the kitchen to the trash can. She never dreamed that she would take an ambulance to the hospital, and that I would walk in ankle deep pet hair to get to the kitchen. The day she was released from the hospital was the day I found a warning tag on our doorknob that I would be fined if I didn't mow the grass immediately. She neglected to pay for the water, so it was shut off and reinstated after a night without it. That's not fun when you are throwing up regularly.
Cancer controlled Elaine, so it became my job to keep the household going. Elaine began this journey as a very sick woman who could do little besides sleeping or sitting in her recliner. She was very weak and could eat only a few bites or even drink only a couple of swallows of water. She was prone to motion sickness for the first time in her life. We traveled to doctor's appointments and medical procedures only. I kept track of those, and I still drive everywhere. Elaine tires so easily.
As her spleen shrunk, Elaine became more physically comfortable. She could eat and drink as she liked, and she began to gain, rather than lose, weight between appointments. The motion sickness went away. Elaine has had 2 root canal procedures while on chemo, and her improved dental health has helped too. As she improved in these ways, however, the side effects of the chemo increased.
Elaine lost enough hair that she eventually went for a buzz cut. She began to wear hats and wigs (the party store kind in bright colors) when we went out. We were very conscious of the need to avoid infectious diseases, so we rarely went to crowded places. I even did all the grocery shopping. But we are fortunate to live in Florida, where winter means a few isolated 3 day cold weather events but with the compensation of hundreds of thousands of migrating birds to see from your car. Elaine and I, sometimes with her dad when he was in, traveled the back roads within an hour or our house, looking for opportunities to use her new camera for some more nature shots.
Elaine also took up loom knitting. Every member of our family received some knitted item, a hat or a scarf before that wore itself out. She began to make headbands and fascinators more recently. The glue gun sometimes seems an extension of her right arm! Elaine has read extensively since elementary school, but chemo brain left her unable to focus on fiction, so these craft projects have occupied many hours. We also enjoy board games, and she plays a phone game too.
Fatigue is Elaine's main medical complaint these days, along with stomach issues. It has been 12 days since her last chemo, and I am hoping that she will notice these side effects fading away as time passes. She has a CT scan tomorrow, and we expect that it will be clear and she won't see the oncologist again for three months. We will be pleased not to have the hour long drive nor any of the hospital-related details like parking lots and waiting rooms, blood draws and tests, traffic and empty gas tanks. We look forward to travel and home improvement projects that we can afford, as income returns to normal. Elaine and I look forward to long hikes and swimming in the springs and ocean when I return as a snowbird in the fall. Mostly we look forward to continued remission until the glorious day Dr. Chew tells us that Elaine is cured.
We have been blessed in so many ways. First we had each other and Ron. We have formed a posse for sure. Ron was in touch daily, even when he was in WV. He stayed with Elaine during two of my three short trips to see my new granddaughter, making that possible. When he was here, he was the guy in charge of keeping spirits up. We could count on him to get a smile from Elaine on even the darkest days.Our little family is close in a way we weren't before going through this together.
We have been blessed by so many family members and friends too. Those who took the time to visit are especially appreciated, as we are not located very near anyone we know well. Those who drove out of their ways, or who flew in for a time, will always be remembered. We appreciated the calls and messages too. And the cards....so many cards, even a few with a special monetary donation which helped Elaine get a bedroom tv for those very bad days.
The blessings were material as well. Elaine has great insurance, and the co-pays are minimal. Her disability pay and our ability to modify her rent payment has meant that she hasn't had to go into debt or on a search for providers who accept Medicaid. The house we share in Florida meant that we have been comfortably in our own home, not that I had to sleep on a sofa or that we had to share a bathroom. We have had reliable transportation and a beautiful neighborhood.
If your world is rocked by the news that you need an oncologist, it's a blessing to hear that your particular cancer is Hodgkin lymphoma, with its excellent prognosis, and that it's not in your bone marrow. There was no surgery to remove tumors, and there will be no need for radiation. Twelve chemo treatments were a lot, but it doesn't seem that way to the man I met in the oncology department who was beginning a third round of chemo with his wife, beginning in 2013.
The ride through Cancerland has been bumpy! This mom is more than ready to shed the role of caretaker and to return to her home in the WV hills. She's also grateful that it was possible for her to be present during the trip, but she wants to see her daughter growing stronger and more capable. Then she can get busy spoiling her sweet granddaughter in WV.
Tuesday, March 19, 2019
March 19, 2019
1 Corinthians 4: 12 We work hard with our own hands. When we are cursed, we bless; when we are persecuted, we endure it; 13 when we are slandered, we answer kindly.
Paul is concerned with some people in the church at Corinth. He feels that they are leading followers astray. He lets them know how true disciples act.
It reminds me of Michelle Obama. When they go low, we go high. There is never any excuse for true followers to act in any way except love. I am trying this tactic in our troubled country. I never respond in anger publicly, even when others try to provoke me. It's a start.
Prayer: Lord, I worry about Your people. I pray for them to see each other as You see us. I want to see their fears soothed, not inflamed. I promise to bless when cursed, to endure ridicule if not persecution, and to answer kindly when others slander me. Bless us, every one.
Amen
Paul is concerned with some people in the church at Corinth. He feels that they are leading followers astray. He lets them know how true disciples act.
It reminds me of Michelle Obama. When they go low, we go high. There is never any excuse for true followers to act in any way except love. I am trying this tactic in our troubled country. I never respond in anger publicly, even when others try to provoke me. It's a start.
Prayer: Lord, I worry about Your people. I pray for them to see each other as You see us. I want to see their fears soothed, not inflamed. I promise to bless when cursed, to endure ridicule if not persecution, and to answer kindly when others slander me. Bless us, every one.
Amen
Wednesday, March 13, 2019
March 13, 2019
Deuteronomy 24: 14 Do not take advantage of a hired worker who is poor and needy, whether that worker is a fellow Israelite or a foreigner residing in one of your towns.
Deuteronomy is full of rules that Moses is giving the chosen people before they enter the Promised Land. There are LOTS of rules, and There are many we don't follow today as per Paul's comments in Galatians. But there are some which still seem relevant. The people are told to pay the poor promptly, because they need the money. There is also a call for justice for the foreigners.
In troubled times like ours, it's easy to wonder how God thinks about xenophobia. People fear and even hate based on nationality (among other reasons) which make some people seem different. Many in our country, past and present, have done exactly what the Scriptures forbid. They profited as a result. That's not ok.
Prayer: Lord, I pray for all Your people who have been taken advantage of because they are different. Make us aware of our unjust behavior. Guide us to be kind to everyone.
Amen
Deuteronomy is full of rules that Moses is giving the chosen people before they enter the Promised Land. There are LOTS of rules, and There are many we don't follow today as per Paul's comments in Galatians. But there are some which still seem relevant. The people are told to pay the poor promptly, because they need the money. There is also a call for justice for the foreigners.
In troubled times like ours, it's easy to wonder how God thinks about xenophobia. People fear and even hate based on nationality (among other reasons) which make some people seem different. Many in our country, past and present, have done exactly what the Scriptures forbid. They profited as a result. That's not ok.
Prayer: Lord, I pray for all Your people who have been taken advantage of because they are different. Make us aware of our unjust behavior. Guide us to be kind to everyone.
Amen
Tuesday, March 12, 2019
March 12, 2019
Galatians 2 : 21 If a living relationship with God could come by rule-keeping, then Christ died unnecessarily.
Galatians 3: 28 There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus
I didn't read yesterday, so I reviewed the chapter. Verse 2:21 was too good to miss.
Paul is explaining his ministry. He reminds us of his Jewish upbringing and his conversion. He explains the contact he had with the original disciples. He explains that Christ died for everyone. The rules were kept in order to have the right place for Jesus to show up. Once that was accomplished, through his life and death, the rules do not apply.
This is so fundamental, and it's also so misunderstood. Rules are the backbone of many people 's faith. They are so concerned with sinners of all kinds, except for people like them. I feel this unity, and I pray that all those who call themselves people of faith would too.
Prayer: Lord, strengthen Your people, that we may resist the powers of wickedness that surround us. Help us to be better representatives of our beliefs. Strengthen me when daily stresses take my eye from You.
Amen
Galatians 3: 28 There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus
I didn't read yesterday, so I reviewed the chapter. Verse 2:21 was too good to miss.
Paul is explaining his ministry. He reminds us of his Jewish upbringing and his conversion. He explains the contact he had with the original disciples. He explains that Christ died for everyone. The rules were kept in order to have the right place for Jesus to show up. Once that was accomplished, through his life and death, the rules do not apply.
This is so fundamental, and it's also so misunderstood. Rules are the backbone of many people 's faith. They are so concerned with sinners of all kinds, except for people like them. I feel this unity, and I pray that all those who call themselves people of faith would too.
Prayer: Lord, strengthen Your people, that we may resist the powers of wickedness that surround us. Help us to be better representatives of our beliefs. Strengthen me when daily stresses take my eye from You.
Amen
Saturday, March 9, 2019
The Mindful Caregiver
As my daughter's chemotherapy began, we dealt with a number of issues. Of course, first and foremost, was her health. Elaine had avoided the signals her body sent her, and she was finally transported by ambulance to the hospital in late August of last year. Severe anemia was her main problem, but her nurse practitioner told us early on the second day that an oncologist had been called. Dr. Chew confirmed the staff suspicions that Elaine had Hodgkin lymphoma. Now she had a leave of absence from work, and twelve treatments were scheduled, each occurring no sooner than two weeks after the previous one.
Six months of chemo were coming. I am blessed to have been able to stay with Elaine in Florida throughout the treatment, although it has caused us significant financial difficulties. My husband, Elaine's beloved dad, has come and gone from our house in WV several times. Our son and daughter-in-law, who has just given us our first grandchild, were in WV too.
I have been a snowbird since retiring in 2016. I normally come to Deltona before Halloween and return to WV in April. Elaine works from home, so I would spend my days running errands or doing housework while Elaine worked. I helped at a food pantry one morning a week, and I visited childhood friends and family in Cocoa on occasion. None of that was going on this year. I was pretty apprehensive about how we would handle this emotionally.
I love my public library here (and in Upshur too!), so I noticed the new display of books for caregivers. I looked at several, but none grabbed my attention until I spotted The Mindful Caregiver.
Six months of chemo were coming. I am blessed to have been able to stay with Elaine in Florida throughout the treatment, although it has caused us significant financial difficulties. My husband, Elaine's beloved dad, has come and gone from our house in WV several times. Our son and daughter-in-law, who has just given us our first grandchild, were in WV too.
I have been a snowbird since retiring in 2016. I normally come to Deltona before Halloween and return to WV in April. Elaine works from home, so I would spend my days running errands or doing housework while Elaine worked. I helped at a food pantry one morning a week, and I visited childhood friends and family in Cocoa on occasion. None of that was going on this year. I was pretty apprehensive about how we would handle this emotionally.
I love my public library here (and in Upshur too!), so I noticed the new display of books for caregivers. I looked at several, but none grabbed my attention until I spotted The Mindful Caregiver.
March 9, 2019
Mark 16: 14 Later Jesus appeared to the Eleven as they were eating; he rebuked them for their lack of faith and their stubborn refusal to believe those who had seen him after he had risen.
The OT chapters today are about Moses telling the chosen people about the way they should live in the Promised Land. He wants them specifically that their children didn't see the signs in Egypt not on the majority of the Exodus. Here Jesus rebukes the disciples who would not believe what they hadn't seen.
Faith is tough. It is believing in the unseen. The chosen people had trouble believing a God who gave them food and a light to follow in the desert. Who held back the waters so they could cross, but then let the waters go to kill their enemies. The disciples didn't believe their friends telling them that Jesus was back like he told them he would be. I guess it's not surprising that so many today lack faith. "They say Jesus is coming. He must be walking instead of running." Two thousand years of faith. Whew!
Prayer: I praise You, Lord, for the lives of faith that You have created since the crucifixion. It's a fine thing that so many have worshipped for so long. Please continue to guide Your followers. In Jesus's name,
Amen.
The OT chapters today are about Moses telling the chosen people about the way they should live in the Promised Land. He wants them specifically that their children didn't see the signs in Egypt not on the majority of the Exodus. Here Jesus rebukes the disciples who would not believe what they hadn't seen.
Faith is tough. It is believing in the unseen. The chosen people had trouble believing a God who gave them food and a light to follow in the desert. Who held back the waters so they could cross, but then let the waters go to kill their enemies. The disciples didn't believe their friends telling them that Jesus was back like he told them he would be. I guess it's not surprising that so many today lack faith. "They say Jesus is coming. He must be walking instead of running." Two thousand years of faith. Whew!
Prayer: I praise You, Lord, for the lives of faith that You have created since the crucifixion. It's a fine thing that so many have worshipped for so long. Please continue to guide Your followers. In Jesus's name,
Amen.
Friday, March 8, 2019
March 8, 2019
Mark 15: 39 And when the centurion, who stood there in front of Jesus, saw how he died,[c] he said, “Surely this man was the Son of God!”
Jesus is crucified. Pilate saw through the plotting of the leafers, but he was weak in the face of the crowds. The people and the leaders mocked him as he suffered. Prophecy was fulfilled in many forms. In the end, Jesus died, but it's not the end after all. The competition's realization is the beginning of Christianity in some way.
I have read all my past posts from this date. Each time I have focused on one of the other players, never on Jesus. It's hard to think of all he endured for us. What was it that the centurion saw? Was it the signs of nature? Was it something in his face or voice? The certainty appeals to me. To never doubt, to know for sure....well, it's not how faith works these days.
Jesus is crucified. Pilate saw through the plotting of the leafers, but he was weak in the face of the crowds. The people and the leaders mocked him as he suffered. Prophecy was fulfilled in many forms. In the end, Jesus died, but it's not the end after all. The competition's realization is the beginning of Christianity in some way.
I have read all my past posts from this date. Each time I have focused on one of the other players, never on Jesus. It's hard to think of all he endured for us. What was it that the centurion saw? Was it the signs of nature? Was it something in his face or voice? The certainty appeals to me. To never doubt, to know for sure....well, it's not how faith works these days.
Wednesday, March 6, 2019
March 6, 2019
Deuteronomy 3: 22 Do not be afraid of them; the Lord your God himself will fight for you.
It's a banner day in the readings, as this account of the final days of the exodus gives us lasting advice from Moses, who knows he will die soon. God has forbidden him to enter the Promised Land, but he allows Moses to view it in the next set of passages. Then there's a great Psalm from David and Jesus's prophecies about the Temple, as the church leaders pick apart everything he says, looking for justification to kill him.
It all comes down to faith. The fig tree is back, this time it tells us, by its leaves, that summer is here. That's happening right outside my window. The lack of faith of his people handicaps Moses, making it impossible for him to finish the great task God gave him. The Psalm is divided between a warning to the wicked and singing God's praises. It ends with a plea for strength, like we see here. It's just a matter of faith. It's that simple, and it's that hard.
Prayer: Lord, I struggle to understand people of faith. I know some whose faith seems very strong, but they don't follow You on the ways that I do. It's tearing my own church apart, and I pray for some kind of reconciliation. Your people need Your guidance. Please, I pray, show us how to lift Your name up in this hostile climate.
Amen
It's a banner day in the readings, as this account of the final days of the exodus gives us lasting advice from Moses, who knows he will die soon. God has forbidden him to enter the Promised Land, but he allows Moses to view it in the next set of passages. Then there's a great Psalm from David and Jesus's prophecies about the Temple, as the church leaders pick apart everything he says, looking for justification to kill him.
It all comes down to faith. The fig tree is back, this time it tells us, by its leaves, that summer is here. That's happening right outside my window. The lack of faith of his people handicaps Moses, making it impossible for him to finish the great task God gave him. The Psalm is divided between a warning to the wicked and singing God's praises. It ends with a plea for strength, like we see here. It's just a matter of faith. It's that simple, and it's that hard.
Prayer: Lord, I struggle to understand people of faith. I know some whose faith seems very strong, but they don't follow You on the ways that I do. It's tearing my own church apart, and I pray for some kind of reconciliation. Your people need Your guidance. Please, I pray, show us how to lift Your name up in this hostile climate.
Amen
Tuesday, March 5, 2019
Mark 12: 38 As he taught, Jesus said, “Watch out for the teachers of the law. They like to walk around in flowing robes and be greeted with respect in the marketplaces,
Jesus is nearing the end of his ministry. He has many lessons yet to impart, but he focused a lot on this theme. The leaders enjoy their power and authority. They forget the greatest commands...to love God and their neighbors. They strut around in pride and entitlement.
Well, I never finished this post. I had my wisdom tooth removed, and I was out of it. I was just preparing to finish when Ron called. I listened to his conversation with Elaine, and I went to bed early.
I did mull over this passage all day. I wondered about the leaders of my church, the UMC. The recent passage of the Traditional Plan leaves many uneasy, and the clergy must be devastated to see what is happening to an institution they have dedicated their lives to literally. I have been saying extra prayers for thrm.
Jesus is nearing the end of his ministry. He has many lessons yet to impart, but he focused a lot on this theme. The leaders enjoy their power and authority. They forget the greatest commands...to love God and their neighbors. They strut around in pride and entitlement.
Well, I never finished this post. I had my wisdom tooth removed, and I was out of it. I was just preparing to finish when Ron called. I listened to his conversation with Elaine, and I went to bed early.
I did mull over this passage all day. I wondered about the leaders of my church, the UMC. The recent passage of the Traditional Plan leaves many uneasy, and the clergy must be devastated to see what is happening to an institution they have dedicated their lives to literally. I have been saying extra prayers for thrm.
Monday, March 4, 2019
March 4, 2019
Mark 10: 15 On reaching Jerusalem, Jesus entered the temple courts and began driving out those who were buying and selling there. He overturned the tables of the money changers and the benches of those selling doves
Jesus has come to the temple for the final time. He is not the meek and mild Jesus. He is a man with a mission. He says that the place of worship has become a place for robbers.
The authorities don't appreciate this one bit. Everything they have worked for is in jeopardy. They begin to plot to kill Jesus.
It's compelling to consider this Jesus in light of the UMC and our problems with sexuality. I know many Christians who say that homosexuality is a sin. They know that, because it's in the Bible. They find it outrageous that anyone would consider having a same sex marriage in the church, much less to ordain homosexuals. They picture Jesus outraged at these things, overturned tables would be a bare beginning of where they think he would take it. Others, like myself, see the potential outrage directed towards those who would exclude other believers from the full bounty of faith.
Prayer: Lord, we fail You every day. Help us to see how we can strengthen the bond between Your people. I pray for Your church and Your clergy in particular. Guide Your church to strengthen the faith of believers and to show Christian love to nonbelievers.
Amen
Jesus has come to the temple for the final time. He is not the meek and mild Jesus. He is a man with a mission. He says that the place of worship has become a place for robbers.
The authorities don't appreciate this one bit. Everything they have worked for is in jeopardy. They begin to plot to kill Jesus.
It's compelling to consider this Jesus in light of the UMC and our problems with sexuality. I know many Christians who say that homosexuality is a sin. They know that, because it's in the Bible. They find it outrageous that anyone would consider having a same sex marriage in the church, much less to ordain homosexuals. They picture Jesus outraged at these things, overturned tables would be a bare beginning of where they think he would take it. Others, like myself, see the potential outrage directed towards those who would exclude other believers from the full bounty of faith.
Prayer: Lord, we fail You every day. Help us to see how we can strengthen the bond between Your people. I pray for Your church and Your clergy in particular. Guide Your church to strengthen the faith of believers and to show Christian love to nonbelievers.
Amen
Sunday, March 3, 2019
March 3, 2019
Mark 10: 24 And the disciples were astonished at His words. But Jesus answered again and said to them, “Children, how hard it is [b]for those who trust in riches to enter the kingdom of God!
Jesus and his disciples are headed for Jerusalem. His time in Earth is nearly over. They still don't get it. Along the way they meet a rich young ruler. He asks Jesus how to get into heaven. Jesus cites the ten commandments. He says he's good with those and always has been. (Not likely) Them Jesus asks him to sell his things and follow him. He's sad, and he leaves, because he can't do that. This quote is Jesus's summary of the situation for the disciples. He follows that with the camel going through the eye of the needle analogy.
It's been a rough week. My UMC is ripped apart over same sex marriage and ordination of gays. Ron has been held hostage through the end of hunting season with a multi-day migraine. Elaine is weakened by 10 chemo treatments and doesn't rebound from it like she used to. Dan and GG are up in the air with a major decision. And we got other devastating family news...a family member is an addict. These words being me back to the essence of my faith. If anything, ANY thing, is more important than my faith, it is wrong. Even if it's a good thing, a pleasure bringing thing, it can't be something that I would not drop in a second for Jesus if he asks.
Prayer: Lord, help me to see the things that separate me from You. Guide me to eliminate them from my life. Don't let me become the rich young ruler, so proud of my accomplishments, so distant from You.
Amen
Jesus and his disciples are headed for Jerusalem. His time in Earth is nearly over. They still don't get it. Along the way they meet a rich young ruler. He asks Jesus how to get into heaven. Jesus cites the ten commandments. He says he's good with those and always has been. (Not likely) Them Jesus asks him to sell his things and follow him. He's sad, and he leaves, because he can't do that. This quote is Jesus's summary of the situation for the disciples. He follows that with the camel going through the eye of the needle analogy.
It's been a rough week. My UMC is ripped apart over same sex marriage and ordination of gays. Ron has been held hostage through the end of hunting season with a multi-day migraine. Elaine is weakened by 10 chemo treatments and doesn't rebound from it like she used to. Dan and GG are up in the air with a major decision. And we got other devastating family news...a family member is an addict. These words being me back to the essence of my faith. If anything, ANY thing, is more important than my faith, it is wrong. Even if it's a good thing, a pleasure bringing thing, it can't be something that I would not drop in a second for Jesus if he asks.
Prayer: Lord, help me to see the things that separate me from You. Guide me to eliminate them from my life. Don't let me become the rich young ruler, so proud of my accomplishments, so distant from You.
Amen
Tuesday, February 12, 2019
The Long View from Cancerland: Time for Treatment
Chemotherapy began for my daughter, Elaine, on September 26, 2019. A month had passed since we heard that she probably had cancer. She had been admitted from the Emergency Room with severe anemia, and she had ridden to the hospital by ambulance. When I heard about that, I packed a backpack and caught the flight from Huntington to her in Florida. The last few weeks had been interminable. We wrestled with doctor's offices and hospitals, with her employer and their insurance company. We fielded calls and messages from interested friends and family, and we struggled to deal with all of this essentially by ourselves.
At this point, there are serious financial questions bothering all cancer patients. At our first chemotherapy session, I met a lady who had spoken to another patient as she left. The lady who was leaving looked very frail and weak, but she had recognized the other lady as a teacher in child care classes she had taken while working for Head Start. She had insurance through her job, but Head Start did not renew her contract for 2018-2019 after she was diagnosed, so she lost both her income and her insurance. She was forced to apply for a medical card and to find providers who will accept Medicaid. Not every doctor or facility will. This lady had enough troubles with the cancer, without the financial complications as well.
Elaine had used all her vacation and sick leave as she weakened, so the time after her hospital stay was a time to return to her work from home job. She tried to work, she really did, but a job like hers is very schedule driven. She had to log on and stay on until a problem was resolved. She worked a ten hour shift, which required more strength and endurance than she had left. She ultimately decided to ask for a leave for the period of her treatment.
I was floored. I had listened to her leave her office to throw up in the bathroom next to it, so you might have thought I would have expected this. She had been dealing with the difficult policies on intermittent leave. The limited number of hours available during a pay period made this unworkable due to doctor's appointments alone. And doctor's appointments were not going to be the only reason she wouldn't be able to work at her usual efficiency. In her company, your numbers are everything. Elaine normally appreciated this, as she knew she was working with others who were also committed to serving the customer fairly. But if she slid, because she was dealing with nausea or fatigue or neuropathy or.... Well, it wasn't going to be good for her career.
Elaine's company offered a very generous six month leave with 60% of her base pay. We are Elaine's landlords, so we could reduce her payment there. I would be staying here, buying all the food, and Elaine could continue to pay the utilities, car payment and reduced rent. It was going to be tight, but she wouldn't go into debt like so many in her position.
Every day nearing 5000 Americans find out that they have cancer. Each day about 1500 lives are lost to it. Those brave warriors fighting cancer need the support of every American to just get through the treatments which offer cure or extended quality of life. No life is too unimportant, every case is a son or daughter, a sister or brother, a mother or father. Their lives deserve better consideration. Health care and support services should be available to all of us, with a minimum of effort by the patients who are already coping with pain, nausea, and fatigue that the rest of us find difficult to imagine.
For me, leaving work was more than a financial decision though. It struck me that she was giving up so much more than money. Elaine worked from home. Her contacts with the outside world would be severed. It would be the two of us, alone, isolated by distance and circumstances from those who cared about us. Here, in Deltona,we know our immediate neighbors, and that's it. I don't even have a social media friend here. None. I have seen people I recognized in Wal Mart three times in the two and a half years I have lived here. They were all from the Food Pantry I worked in last winter while I was here.
We have visitors occasionally, but we also go many days without speaking to a human besides each other. We get calls from Ron, my husband, and video chats with my darling granddaughter, thanks to my daughter-in-law. I talk to other friends and family a couple of times a week. We do communicate on social media with friends all over the world.
Elaine's employer has provided her with a Life Coach who has worked with her for several weeks in weekly phone chats. It is valuable in letting her move through the process. Right now they are focusing on life after treatment.
We talked about creating Cancerland: The Board Game. We visualized it as a wander through the forest of diagnosis, before boarding the ship (Cancer) for a sail down a long and perilous river to the land of Cure. We began to isolate the events which would mark the way, the blessings and the pitfalls. before landing at Cure.
Today there is just one more treatment remaining for Elaine. There will be another PET scan in April. The nurse practitioner has advised us about the schedule of appointments through the next few years, letting us know that Elaine is likely to land at the goal of every cancer patient, Cure. That's a glorious thing!
At this point, there are serious financial questions bothering all cancer patients. At our first chemotherapy session, I met a lady who had spoken to another patient as she left. The lady who was leaving looked very frail and weak, but she had recognized the other lady as a teacher in child care classes she had taken while working for Head Start. She had insurance through her job, but Head Start did not renew her contract for 2018-2019 after she was diagnosed, so she lost both her income and her insurance. She was forced to apply for a medical card and to find providers who will accept Medicaid. Not every doctor or facility will. This lady had enough troubles with the cancer, without the financial complications as well.
Elaine had used all her vacation and sick leave as she weakened, so the time after her hospital stay was a time to return to her work from home job. She tried to work, she really did, but a job like hers is very schedule driven. She had to log on and stay on until a problem was resolved. She worked a ten hour shift, which required more strength and endurance than she had left. She ultimately decided to ask for a leave for the period of her treatment.
I was floored. I had listened to her leave her office to throw up in the bathroom next to it, so you might have thought I would have expected this. She had been dealing with the difficult policies on intermittent leave. The limited number of hours available during a pay period made this unworkable due to doctor's appointments alone. And doctor's appointments were not going to be the only reason she wouldn't be able to work at her usual efficiency. In her company, your numbers are everything. Elaine normally appreciated this, as she knew she was working with others who were also committed to serving the customer fairly. But if she slid, because she was dealing with nausea or fatigue or neuropathy or.... Well, it wasn't going to be good for her career.
Elaine's company offered a very generous six month leave with 60% of her base pay. We are Elaine's landlords, so we could reduce her payment there. I would be staying here, buying all the food, and Elaine could continue to pay the utilities, car payment and reduced rent. It was going to be tight, but she wouldn't go into debt like so many in her position.
Every day nearing 5000 Americans find out that they have cancer. Each day about 1500 lives are lost to it. Those brave warriors fighting cancer need the support of every American to just get through the treatments which offer cure or extended quality of life. No life is too unimportant, every case is a son or daughter, a sister or brother, a mother or father. Their lives deserve better consideration. Health care and support services should be available to all of us, with a minimum of effort by the patients who are already coping with pain, nausea, and fatigue that the rest of us find difficult to imagine.
For me, leaving work was more than a financial decision though. It struck me that she was giving up so much more than money. Elaine worked from home. Her contacts with the outside world would be severed. It would be the two of us, alone, isolated by distance and circumstances from those who cared about us. Here, in Deltona,we know our immediate neighbors, and that's it. I don't even have a social media friend here. None. I have seen people I recognized in Wal Mart three times in the two and a half years I have lived here. They were all from the Food Pantry I worked in last winter while I was here.
We have visitors occasionally, but we also go many days without speaking to a human besides each other. We get calls from Ron, my husband, and video chats with my darling granddaughter, thanks to my daughter-in-law. I talk to other friends and family a couple of times a week. We do communicate on social media with friends all over the world.
Elaine's employer has provided her with a Life Coach who has worked with her for several weeks in weekly phone chats. It is valuable in letting her move through the process. Right now they are focusing on life after treatment.
We talked about creating Cancerland: The Board Game. We visualized it as a wander through the forest of diagnosis, before boarding the ship (Cancer) for a sail down a long and perilous river to the land of Cure. We began to isolate the events which would mark the way, the blessings and the pitfalls. before landing at Cure.
Today there is just one more treatment remaining for Elaine. There will be another PET scan in April. The nurse practitioner has advised us about the schedule of appointments through the next few years, letting us know that Elaine is likely to land at the goal of every cancer patient, Cure. That's a glorious thing!
Thursday, January 24, 2019
Over the hump
January 24, 2019
I have not been writing. We stopped doing the words. Elaine was miserable last time after chemo. The root canal, done the day after Chemo #7 and the wonderful PET scan results, was very traumatic, and the recovery time was prolonged. It sucked the life right out of this place. Then Ron decided to come down suddenly, and nothing has been normal since.
Yesterday was chemo #8. Dr. Chew was obviously very pleased with Elaine's most recent results. There was a medical student, and he was glad for her to see the positive change. He asked whether recovery from the last cycle was less intense, but we explained that the root canal had clouded that.
Chemo was next, and it was fairly normal. Elaine's nurse was the quiet one, so it wasn't as much girl talk as sometimes occurs. I wasn't feeling well. I still don't, and I am flying to WV tomorrow afternoon.
At chemo, I noticed how thin Elaine's hair has gotten. She has been talking about getting it cut, so we went in the afternoon. The girl used the clippers on 3 and 4, like a guy's haircut. This uncovered Elaine's strange crowns and a few alopecia spots, but it looks kind of cute. And it feels much better to her. She sprayed it with purple dye to perk it up a bit. The girl at the salon was so nice, and the manager told her it was no charge. She took pictures to post on Facebook right away.
Now it's 4 PM, and she and Ron are out. He wants to go out every day. This is the second day I have begged off.I hope she doesn't overdo it while I am gone. I know how much she wants to please him. I am looking forward to seeing the baby and helping GG out. But I will worry.
I have not been writing. We stopped doing the words. Elaine was miserable last time after chemo. The root canal, done the day after Chemo #7 and the wonderful PET scan results, was very traumatic, and the recovery time was prolonged. It sucked the life right out of this place. Then Ron decided to come down suddenly, and nothing has been normal since.
Yesterday was chemo #8. Dr. Chew was obviously very pleased with Elaine's most recent results. There was a medical student, and he was glad for her to see the positive change. He asked whether recovery from the last cycle was less intense, but we explained that the root canal had clouded that.
Chemo was next, and it was fairly normal. Elaine's nurse was the quiet one, so it wasn't as much girl talk as sometimes occurs. I wasn't feeling well. I still don't, and I am flying to WV tomorrow afternoon.
At chemo, I noticed how thin Elaine's hair has gotten. She has been talking about getting it cut, so we went in the afternoon. The girl used the clippers on 3 and 4, like a guy's haircut. This uncovered Elaine's strange crowns and a few alopecia spots, but it looks kind of cute. And it feels much better to her. She sprayed it with purple dye to perk it up a bit. The girl at the salon was so nice, and the manager told her it was no charge. She took pictures to post on Facebook right away.
Now it's 4 PM, and she and Ron are out. He wants to go out every day. This is the second day I have begged off.I hope she doesn't overdo it while I am gone. I know how much she wants to please him. I am looking forward to seeing the baby and helping GG out. But I will worry.
Tuesday, January 1, 2019
Mindful Caregiver 2019
1/1 Accepting
We accepted the offers that came out way via text, and now there's a plan for a nice little birthday. The whole birthday was a sore spot with me. Elaine had posted a hopeful note asking who would come if she had a birthday party. Some out of town people said they wished they could, but only 2 cousins responded at all. One had a conflict she had forgotten, and the other would be working on the actual birthday. When I spoke with my niece with the conflict, she kept trying to suggest other people who might come. Nobody comes of that group. Ever. It just sent me into a tailspin, thinking of Elaine 's friends who aren't.
This little plan dropped into our laps suddenly, and Elaine has ordered a cake she is very excited about. My friend is coming for lunch, and her cousin is spending the night. It will be great, and all we had to do was accept what came out way.
1/2 Productive
Things got done. Progress was made. Okay, so it wasn't a dawn to dusk spring cleaning or a shop til you drop day in the city, but things got done. A shower was taken early, some thrift shopping was enjoyed. Plans were made and executed for Ron's birthday surprise. My address book was located, and banking was checked. Elaine was awake most of the day and ordered pizza. She helped me carry the thrift store table in.
1/3 Joyful
It's Elaine's birthday, and she says joyful! She was pleased with her cake and the birthday balloon I got, but I was an idiot who forgot her wallet and had to make 2 trips to the store. Elaine took a long nap, but she's excited about meeting the family for birthday dinner. This was Plan B, quickly formed after our day guest got sick. No chance we want to risk infection!
Chris is staying overnight, and I will take him to the airport in the morning.
1/4 Adaptable
We started the day early, with my trip to the airport. Elaine was awake when I returned, but I napped before our adaptation began. It was cloudy, so we took the dogs to run together. Elaine hadn't been out with us in quite a while!
We rested awhile before heading to Cocoa Beach, which had been out only tentative plan. Elaine wasn't feeling well as we got closer, but she rested, then napped, then she joined with the family for a visit. We had thought she might swim, but she didn't. Things just happened, or they didn't. We adapted.
1/5 Observant
Elaine announced that she wanted to get out this morning. Then a friend called, and it was a long conversation, so it was actually after noon when we left. We were headed to a wildlife rescue, but quickly she realized that she wasn't going to hold out for quite such a long time. We turned to the West and headed for Green Springs. We found Mariner's Cove along the way, and we moved on to Gemini Springs as well. We stopped at Pell's Nursery on the way home to get plants and citrus. It was quite a day, with beautiful parks and springs and plants. We observed much, following Elaine's observations about her condition which changed our plans.
1/6 Fearless
We traveled to Daytona Hamburger Mary's for the Drag Brunch. I 4 was worse than usual, so my fearless driving got us there. Then Elaine and Sherri celebrated their birthdays onstage. They were fearless and fierce!
1/7 Patient
We had to be patient during the commute and especially at the clinic. There was a lot of waiting, and the staff had real problems getting a vein. That hurts, but it's also mentally taxing. Then more waiting and a boring test. But our patience was rewarded by a good meal at Cheddars and a short shop for yarn (Elaine) and at Big Lots.
1/8 Proactive
Elaine met with her recovery coach this morning, and she went to the dentist this afternoon. She has a couple of issues, and she made an appointment with the endodontist. I worked on the house.
1/9 Humble
Elaine went humbly into the doctor's this morning, accepting that her results would be good. It was! There were no actively growing cancer cells anywhere, and her spleen is shrinking. He took away the V drug.
I humbly accept that I was a nervous wreck. It was physically and psychologically overwhelming. I am not sure of the cause; I know that waiting for the test results was a part of it, but hearing good results did not shake it. I believe it was partially due to a lapse into Lyme disease symptoms, but it is humbling when you don't even understand your own feelings. I am a work in progress.
1/10 Accepting
It wasn't the best day. My early morning walk was disturbed by an intruder of sorts, and the time came quickly for Elaine's endodontist appointment. I waited until they knew they were doing a root canal and left for a bit while it was done. Elaine was in a good bit of pain, but we accept that the procedure had to be done. She was having pain and is more likely to have a problem with infection during the remaining chemo. It was very expensive, and her insurance is maxed out. She even made a Go Fund Me to try to get contributions.
It was a day to do what had to be done, to accept that circumstances aren't always in your favor. I was frustrated and had to let it go too.
We accepted the offers that came out way via text, and now there's a plan for a nice little birthday. The whole birthday was a sore spot with me. Elaine had posted a hopeful note asking who would come if she had a birthday party. Some out of town people said they wished they could, but only 2 cousins responded at all. One had a conflict she had forgotten, and the other would be working on the actual birthday. When I spoke with my niece with the conflict, she kept trying to suggest other people who might come. Nobody comes of that group. Ever. It just sent me into a tailspin, thinking of Elaine 's friends who aren't.
This little plan dropped into our laps suddenly, and Elaine has ordered a cake she is very excited about. My friend is coming for lunch, and her cousin is spending the night. It will be great, and all we had to do was accept what came out way.
1/2 Productive
Things got done. Progress was made. Okay, so it wasn't a dawn to dusk spring cleaning or a shop til you drop day in the city, but things got done. A shower was taken early, some thrift shopping was enjoyed. Plans were made and executed for Ron's birthday surprise. My address book was located, and banking was checked. Elaine was awake most of the day and ordered pizza. She helped me carry the thrift store table in.
1/3 Joyful
It's Elaine's birthday, and she says joyful! She was pleased with her cake and the birthday balloon I got, but I was an idiot who forgot her wallet and had to make 2 trips to the store. Elaine took a long nap, but she's excited about meeting the family for birthday dinner. This was Plan B, quickly formed after our day guest got sick. No chance we want to risk infection!
Chris is staying overnight, and I will take him to the airport in the morning.
1/4 Adaptable
We started the day early, with my trip to the airport. Elaine was awake when I returned, but I napped before our adaptation began. It was cloudy, so we took the dogs to run together. Elaine hadn't been out with us in quite a while!
We rested awhile before heading to Cocoa Beach, which had been out only tentative plan. Elaine wasn't feeling well as we got closer, but she rested, then napped, then she joined with the family for a visit. We had thought she might swim, but she didn't. Things just happened, or they didn't. We adapted.
1/5 Observant
Elaine announced that she wanted to get out this morning. Then a friend called, and it was a long conversation, so it was actually after noon when we left. We were headed to a wildlife rescue, but quickly she realized that she wasn't going to hold out for quite such a long time. We turned to the West and headed for Green Springs. We found Mariner's Cove along the way, and we moved on to Gemini Springs as well. We stopped at Pell's Nursery on the way home to get plants and citrus. It was quite a day, with beautiful parks and springs and plants. We observed much, following Elaine's observations about her condition which changed our plans.
1/6 Fearless
We traveled to Daytona Hamburger Mary's for the Drag Brunch. I 4 was worse than usual, so my fearless driving got us there. Then Elaine and Sherri celebrated their birthdays onstage. They were fearless and fierce!
1/7 Patient
We had to be patient during the commute and especially at the clinic. There was a lot of waiting, and the staff had real problems getting a vein. That hurts, but it's also mentally taxing. Then more waiting and a boring test. But our patience was rewarded by a good meal at Cheddars and a short shop for yarn (Elaine) and at Big Lots.
1/8 Proactive
Elaine met with her recovery coach this morning, and she went to the dentist this afternoon. She has a couple of issues, and she made an appointment with the endodontist. I worked on the house.
1/9 Humble
Elaine went humbly into the doctor's this morning, accepting that her results would be good. It was! There were no actively growing cancer cells anywhere, and her spleen is shrinking. He took away the V drug.
I humbly accept that I was a nervous wreck. It was physically and psychologically overwhelming. I am not sure of the cause; I know that waiting for the test results was a part of it, but hearing good results did not shake it. I believe it was partially due to a lapse into Lyme disease symptoms, but it is humbling when you don't even understand your own feelings. I am a work in progress.
1/10 Accepting
It wasn't the best day. My early morning walk was disturbed by an intruder of sorts, and the time came quickly for Elaine's endodontist appointment. I waited until they knew they were doing a root canal and left for a bit while it was done. Elaine was in a good bit of pain, but we accept that the procedure had to be done. She was having pain and is more likely to have a problem with infection during the remaining chemo. It was very expensive, and her insurance is maxed out. She even made a Go Fund Me to try to get contributions.
It was a day to do what had to be done, to accept that circumstances aren't always in your favor. I was frustrated and had to let it go too.
Caregiver in Cancerland 2 Diagnosis and the Beginning of Treatment
Caregiver 2
In my last post, I talked about the path from Elaine 's hospitalization to her diagnosis. Sixteen days after leaving the hospital following her biopsy, Elaine met her oncologist, Dr. Chew. It was September 17. By this time, I had sent emails of complaint to the hospital administration. The first was sent on September 4th, eight days after the biopsy. I complained that no one had followed up, that the patient specialist at the Port Orange, Florida, branch of Halifax Hospital where Elaine stayed said it wasn't her job once Elaine left the hospital. The receptionist at the oncology department was unsure how to direct our calls. She was helpless at best and rude at worst. The whole problem stemmed from the manner in which Elaine entered the system. In a more typical Hodgkin case, a person sees their PCP, primary care physician, with a complaint of swollen glands. Further tests show that it's not an infection, but likely cancer, that has caused the problem. The PCP refers the patient to oncology. Elaine never got a PCP and was admitted from.the emergency room. Her case didn't fit the norm, and we were left afraid and powerless.
Dr. Chew is both a hematologist and an oncologist, practicing at Halifax Hospital in Daytona Beach. It's a huge organization, and it is just our luck that they decided to renovate the oncology department before Elaine became his patient. For six months, about as long as the treatments will last, the oncology department moved to a floor formerly used as same day surgery.
We came into the building and waited to be called. Elaine's vitals were checked, and we moved to an operating room to meet the doctor. Wait. What? The operating rooms are large and sterile looking. There's a noisy ventilation system which is likely helpful during surgery but which doesn't facilitate great communication between patient and doctor. Especially when the patient has a hearing loss. It's fortunate that I don't, and I have never missed an appointment with Dr. Chew. There's an exam table in one corner, and there's a folding table with three folding chairs and a laptop in another. Not so welcoming.
Dr. Chew is a numbers man. As you may suspect, he is Asian, and English is clearly not his first language, although he is fluent in it. He sits at a cheap folding table with his laptop. He scans lists of lab values, sometimes making notes as he reads. He confirms that Elaine has Hodgkin lymphoma. He explains that she will need a number of procedures before she can begin chemotherapy. A port insertion and bone marrow biopsy are scheduled for the next week. A pulmonary function test and chemo school will also be done before the next appointment. With an order for bloodwork, we are on our way.
You may think that is a pretty matter-of-fact declaration of a death sentence, but you will remember that we had access to the test results and a physician friend who interpreted the results for us a week earlier. We were kind of relieved to hear him say it was Hodgkin, and that the treatments would begin soon. Elaine was unable to eat or drink more than a couple of mouthfuls at a time without vomiting everything back up. She was dropping weight at an alarming rate, and her spleen was destroying her red blood cells. The anemia made every step, even staying awake, an ordeal. We wanted some relief.
We begin our long days at Halifax with the port insertion. Both that procedure and the bone marrow biopsy are done in the same part of the hospital but on different days. Port insertion came first. At Halifax, all visitors must show photo identification and wear a photo badge sticker. So I took care of that while Elaine checked in. We followed a staff member through the maze of corridors to the unit. Elaine was given a bed, kind of like being in the emergency room, not a private space but with a curtain for privacy. I stayed with her until they took her to the operating room. I got a bagel in the cafeteria and went back to wait. We repeated this procedure for the bone marrow biopsy on another day. The procedures were uneventful, and that week felt like progress. We also visited our local phlebotomy lab at the Wal-Mart (yes, you read that right!) where I shopped a bit while the lab tech drew blood.
I emailed again on the day before chemo school. While there was no response to my first email, which seemed to baffle staff members, the second got people fired up. I complained specifically about two staff members. The receptionist was not helpful nor kind to persons going through a time of crisis. The insurance coordinator was worse. Staff moved in to try to allay my concerns, but it just made me more upset. We needed to concentrate on the treatment now, since the doors had finally opened. I felt my focus was taken away from the real issue at that point. I was not conciliatory.
The next day we went to chemo school. As a result of my e-mail complaints, the staff had been trying to contact me. I wasn't playing nice. There were sixteen days in which hospital staff were absent at best and downright uncooperative at worst. I had no complaints against the medical professionals who were providing direct care, but the system which supports their efforts failed us. It continues to fail us months later. Let me remind you, Elaine is not a Medicaid patient scrambling to find any kind of care. She has excellent insurance, but she doesn't get excellent care, through no fault of her care providers. American health care is broken.
The following day begins with a blood draw from the port before we see Dr. Chew. He explains that Elaine is Stage III, based on the fact that the lymphoma is both above and below the diaphragm. It was not in the bone marrow however. Dr. Chew is very reassuring about the prognosis. If Elaine completes the six cycles, with 2 treatments per cycle, her odds of a cure are close to 90 percent.
I have had quite a bit of time to research lymphoma treatment, so I am not surprised that Dr. Chew says Elaine will have ABVD treatment. A cocktail of 4 drugs is given, or so I thought. In my mind, they mixed the chemicals and she sat in a chair while the cocktail was pumped into her veins. This isn't accurate, as she receives each of the four drugs separately, one after another. It takes hours, and there wasn't enough time to begin treatment that afternoon. Plus Dr. Chew wanted Elaine to get two more units of blood. So she returned to the chemotherapy room to receive one unit that day, and she would return to get another before chemo the next day.
As I explained, the remodeling has left Oncology patients in the Same Day Surgery area, so chemotherapy has been set up in the pre-op/post-op part of the floor. There are 16 chairs, 8 on the pre-op side and 8 on the post-op side. Nurses are assigned by chair, so you seldom get the same nurse two treatments in a row. It was a shock for me just to see all the other patients. None of the others were as young as Elaine, and one lady had a daughter bringing her each week. It was a contrast from the mother bringing the daughter in our case. Often there was a spouse. Some patients have no one with them. I will never forget the older black lady who was in the chemo room with us, all by herself. As we left, she was sitting in her wheelchair in the hot Florida afternoon, waiting for her ride to show up.
The Oncology Department was going to become as familiar to us as our hair salon or dentist office, but it was strange and otherworldly at first. Everyone is so kind, and the staff and patients make it a calm and serene environment. That's important to the patients, who recline in their chairs, looking at phones or books or magazines, talking quietly to their caregivers, looking at their phones,dozing, just chilling as the poison pumps into their systems. It's our Yellow Brick Road out of Cancerland, and we embrace it, for the time being anyway.
In my last post, I talked about the path from Elaine 's hospitalization to her diagnosis. Sixteen days after leaving the hospital following her biopsy, Elaine met her oncologist, Dr. Chew. It was September 17. By this time, I had sent emails of complaint to the hospital administration. The first was sent on September 4th, eight days after the biopsy. I complained that no one had followed up, that the patient specialist at the Port Orange, Florida, branch of Halifax Hospital where Elaine stayed said it wasn't her job once Elaine left the hospital. The receptionist at the oncology department was unsure how to direct our calls. She was helpless at best and rude at worst. The whole problem stemmed from the manner in which Elaine entered the system. In a more typical Hodgkin case, a person sees their PCP, primary care physician, with a complaint of swollen glands. Further tests show that it's not an infection, but likely cancer, that has caused the problem. The PCP refers the patient to oncology. Elaine never got a PCP and was admitted from.the emergency room. Her case didn't fit the norm, and we were left afraid and powerless.
Dr. Chew is both a hematologist and an oncologist, practicing at Halifax Hospital in Daytona Beach. It's a huge organization, and it is just our luck that they decided to renovate the oncology department before Elaine became his patient. For six months, about as long as the treatments will last, the oncology department moved to a floor formerly used as same day surgery.
We came into the building and waited to be called. Elaine's vitals were checked, and we moved to an operating room to meet the doctor. Wait. What? The operating rooms are large and sterile looking. There's a noisy ventilation system which is likely helpful during surgery but which doesn't facilitate great communication between patient and doctor. Especially when the patient has a hearing loss. It's fortunate that I don't, and I have never missed an appointment with Dr. Chew. There's an exam table in one corner, and there's a folding table with three folding chairs and a laptop in another. Not so welcoming.
Dr. Chew is a numbers man. As you may suspect, he is Asian, and English is clearly not his first language, although he is fluent in it. He sits at a cheap folding table with his laptop. He scans lists of lab values, sometimes making notes as he reads. He confirms that Elaine has Hodgkin lymphoma. He explains that she will need a number of procedures before she can begin chemotherapy. A port insertion and bone marrow biopsy are scheduled for the next week. A pulmonary function test and chemo school will also be done before the next appointment. With an order for bloodwork, we are on our way.
You may think that is a pretty matter-of-fact declaration of a death sentence, but you will remember that we had access to the test results and a physician friend who interpreted the results for us a week earlier. We were kind of relieved to hear him say it was Hodgkin, and that the treatments would begin soon. Elaine was unable to eat or drink more than a couple of mouthfuls at a time without vomiting everything back up. She was dropping weight at an alarming rate, and her spleen was destroying her red blood cells. The anemia made every step, even staying awake, an ordeal. We wanted some relief.
We begin our long days at Halifax with the port insertion. Both that procedure and the bone marrow biopsy are done in the same part of the hospital but on different days. Port insertion came first. At Halifax, all visitors must show photo identification and wear a photo badge sticker. So I took care of that while Elaine checked in. We followed a staff member through the maze of corridors to the unit. Elaine was given a bed, kind of like being in the emergency room, not a private space but with a curtain for privacy. I stayed with her until they took her to the operating room. I got a bagel in the cafeteria and went back to wait. We repeated this procedure for the bone marrow biopsy on another day. The procedures were uneventful, and that week felt like progress. We also visited our local phlebotomy lab at the Wal-Mart (yes, you read that right!) where I shopped a bit while the lab tech drew blood.
I emailed again on the day before chemo school. While there was no response to my first email, which seemed to baffle staff members, the second got people fired up. I complained specifically about two staff members. The receptionist was not helpful nor kind to persons going through a time of crisis. The insurance coordinator was worse. Staff moved in to try to allay my concerns, but it just made me more upset. We needed to concentrate on the treatment now, since the doors had finally opened. I felt my focus was taken away from the real issue at that point. I was not conciliatory.
The next day we went to chemo school. As a result of my e-mail complaints, the staff had been trying to contact me. I wasn't playing nice. There were sixteen days in which hospital staff were absent at best and downright uncooperative at worst. I had no complaints against the medical professionals who were providing direct care, but the system which supports their efforts failed us. It continues to fail us months later. Let me remind you, Elaine is not a Medicaid patient scrambling to find any kind of care. She has excellent insurance, but she doesn't get excellent care, through no fault of her care providers. American health care is broken.
The following day begins with a blood draw from the port before we see Dr. Chew. He explains that Elaine is Stage III, based on the fact that the lymphoma is both above and below the diaphragm. It was not in the bone marrow however. Dr. Chew is very reassuring about the prognosis. If Elaine completes the six cycles, with 2 treatments per cycle, her odds of a cure are close to 90 percent.
I have had quite a bit of time to research lymphoma treatment, so I am not surprised that Dr. Chew says Elaine will have ABVD treatment. A cocktail of 4 drugs is given, or so I thought. In my mind, they mixed the chemicals and she sat in a chair while the cocktail was pumped into her veins. This isn't accurate, as she receives each of the four drugs separately, one after another. It takes hours, and there wasn't enough time to begin treatment that afternoon. Plus Dr. Chew wanted Elaine to get two more units of blood. So she returned to the chemotherapy room to receive one unit that day, and she would return to get another before chemo the next day.
As I explained, the remodeling has left Oncology patients in the Same Day Surgery area, so chemotherapy has been set up in the pre-op/post-op part of the floor. There are 16 chairs, 8 on the pre-op side and 8 on the post-op side. Nurses are assigned by chair, so you seldom get the same nurse two treatments in a row. It was a shock for me just to see all the other patients. None of the others were as young as Elaine, and one lady had a daughter bringing her each week. It was a contrast from the mother bringing the daughter in our case. Often there was a spouse. Some patients have no one with them. I will never forget the older black lady who was in the chemo room with us, all by herself. As we left, she was sitting in her wheelchair in the hot Florida afternoon, waiting for her ride to show up.
The Oncology Department was going to become as familiar to us as our hair salon or dentist office, but it was strange and otherworldly at first. Everyone is so kind, and the staff and patients make it a calm and serene environment. That's important to the patients, who recline in their chairs, looking at phones or books or magazines, talking quietly to their caregivers, looking at their phones,dozing, just chilling as the poison pumps into their systems. It's our Yellow Brick Road out of Cancerland, and we embrace it, for the time being anyway.
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