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.
Thursday, January 24, 2019
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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