It's day 11, or, as the rest of the world calls it, December 23. Christmas Eve Eve, as I have been known to call it. Elaine suggested that to me today. Sorry to say, I wasn't amused. I thought I was okay, I thought I had this Christmas thing under control. I was wrong.
Yesterday, Elaine announced that she wanted to have a birthday party. Unfortunately she not only told me, she put it on Facebook. A few friends who live far away indicated that they would attend in spirit. Elaine's cousins expressed interest. Then we left for a scenic drive. While we were gone, Cousin 1 sent a message saying she had already been invited to an event that day. She really needs to be present. I responded that I understood. This morning she and I messaged about it. That was a mistake.
This day hasn't gone well. I woke up to find our birdbath broken. It's not a big deal, it came with the house, but I enjoy watching the birds and squirrels in it. When Elaine got up, I was researching a replacement. She joined me. As we worked through the possibilities, Ron called. He was upset. He was trying to meet his family before leaving to be with our son tomorrow. He has the morning and early afternoon free, but they had agreed to meet later. He was upset, and I found myself shouting for him to eff them repeatedly. He was blaming himself for no reason. Just do what you need to do, I said. If you can't connect, that's tough. He was actually doing them a favor, delivering stuff they need. There was nothing they had to offer him. It was just too much.
Then Cousin 1 messaged, full of excuses and good intent. She wanted to give us an alternative to the party she couldn't attend. I didn't like being questioned about Elaine 's "friends" locally, none of which had responded ( big surprise) to her post. I finally had to tell her that I needed to stop talking about it, since it was sucking the Christmas spirit out of me.
Then I hurt my back checking out the birdbath at Lowes. Everything sucks today. I am holed up in the bedroom on a heating pad. I am not for company for man of beast. This is just another one of my Cancerland meltdowns. Yes, I know I suck. I have isolated myself from the only ones who really care about me.
My feelings do count, though, don't they?
Sunday, December 23, 2018
Monday, December 17, 2018
On needing care and carrying
I have been sick, very sick, over the weekend. I know that I am the Caregiver, not the care receiver, but my body missed the message. I was laid low, and now I'm well enough to reflect on it. Being sick sucks. Being sick in Cancerland sucks even more.
I began to feel bad on the evening of Day 3. Chemo patients know what I mean. Day 1 was chemo. We count to Day 15, when chemo is scheduled again on Elaine's particular protocol. Day 3 has been the beginning of a series of bad days most often in our limited experience. Or maybe we just try to quantify stuff like that in our futile attempts to believe that somehow we can plan and control the Big C. We cannot.
Anyway, this particular Day 3 was also our family's declared Christmas. We were celebrating early before Ron heads back to WV. We could have waited until.Day 4, but it seemed wise to move ahead while Elaine's side effects weren't too bad. The day was a flurry of shopping, wrapping, and cooking. In the midst of it, I had to lie down. I didn't want to, but I had to. I had trouble forcing myself back up but I did, and we had our lovely roast and opened presents and stockings. Then I announced that I was done and collapsed in bed.
The next day was Saturday, and I was sick all day. I ate little and accomplished nothing. On Sunday, Ron called a friend and decided to leave suddenly. I was too sick to be involved. On Monday, I was well enough to go after my prescriptions. On Tuesday we were both sick of being cooped up here, plus we needed to mail our Christmas cards. Elaine wanted to send them from Christmas, Florida, so we made a trip there and to my parents ' and grandparents ' graves. We were both feeling okay.
I began to feel bad on the evening of Day 3. Chemo patients know what I mean. Day 1 was chemo. We count to Day 15, when chemo is scheduled again on Elaine's particular protocol. Day 3 has been the beginning of a series of bad days most often in our limited experience. Or maybe we just try to quantify stuff like that in our futile attempts to believe that somehow we can plan and control the Big C. We cannot.
Anyway, this particular Day 3 was also our family's declared Christmas. We were celebrating early before Ron heads back to WV. We could have waited until.Day 4, but it seemed wise to move ahead while Elaine's side effects weren't too bad. The day was a flurry of shopping, wrapping, and cooking. In the midst of it, I had to lie down. I didn't want to, but I had to. I had trouble forcing myself back up but I did, and we had our lovely roast and opened presents and stockings. Then I announced that I was done and collapsed in bed.
The next day was Saturday, and I was sick all day. I ate little and accomplished nothing. On Sunday, Ron called a friend and decided to leave suddenly. I was too sick to be involved. On Monday, I was well enough to go after my prescriptions. On Tuesday we were both sick of being cooped up here, plus we needed to mail our Christmas cards. Elaine wanted to send them from Christmas, Florida, so we made a trip there and to my parents ' and grandparents ' graves. We were both feeling okay.
Monday, December 3, 2018
Caregiver 1
A Caregiver in Cancerland
I never intended to be any kind of caretaker. I loved being a mom, but the intensity of the care infants need caused me to consciously decide that two was plenty. Interestingly, life has decided that I will be one. First, my husband has had multiple medical conditions, and then, on a cool late August day, I flew into the hot seat as the caretaker of my 36 year old daughter, who had been admitted to the hospital with low hemoglobin. As I walked into the room, her nurse practitioner had arrived to tell her that an oncologist had been called.
At first, we were touched by the caring staff at Halifax Hospital in Port Orange, Florida, near where Elaine lives, but after a biopsy and 3 units of blood, Elaine was sent home. Elaine works for a major national chain and has excellent insurance. We were told while at the hospital that she needed to establish a primary care physician.. Elaine had met Dr. Chew, and she liked him. Especially since he has the perfect credentials for a blood cancer patient, botha s an oncologist and a hematologist, and he had ordered the biopsy. So we looked for a PCP in their network the day after her discharge. Several weren't accepting new patients, but I found one and set an appointment for a couple of weeks away.
Elaine's condition was not good. She could never eat or even drink more than a mouthful or two without vomiting. She had lost over seventy pounds. She was very weak, as her hemoglobin had never reached a normal ten, even with the transfusions. No one from Halifax Hospital nor its related oncology service reached out to Elaine. I was there, making ice cubes from Pedialyte to float in the Gatorade that kept dehydration away. I kept the household, which also included three pets, going.
We began to try to get into see Dr. Chew to find out the results of her biopsy. Was it what everyone suspected...Hodgkin lymphoma? It was a brick wall. The receptionist didn't know what to do with our calls. Meanwhile, Elaine 's lab results were posted in her portal. When she shared them with a physician friend and asked her impression, she said they supported the diagnosis we expected. After days of calls and holds and waiting for a return call, we got an appointment. And then we lost it.
Dr. Chew wasn't able to treat Elaine without a referral from a PCP. There was no point in an appointment just to talk diagnosis if treatment wasn't a part of it. So we called the network PCP's office. I asked to get an appointment sooner, because of the need to start treatment. They offered the Friday preceding the Monday appointment we already had. When I said that I would have to look for a different PCP, she responded brightly that it was a great idea. Then she hoped that I would have a good day. I told her that didn't seem likely. She didn't say anything about that.
I hung up and found a PCP to see Elaine the following day. We ended up waiting 16 days from biopsy to diagnosis. Again, that's with GOOD insurance.
It was an agonizing time. As much as we dreaded chemotherapy, having seen my husband, Ron, go through it 3 times, it was, and is, all we want. To know that, with chemotherapy, Elaine would be able to eat and drink in normal quantities, that the spleen which was pressing on her organs would be shrinking, that a cure could, ultimately, be compromised by the lag between her hospitalization and the beginning of treatment, and to have NO POWER to move this process along was demoralizing. Every day in Cancerland has become a state of crisis, and we didn't even have a firm diagnosis yet.
I never intended to be any kind of caretaker. I loved being a mom, but the intensity of the care infants need caused me to consciously decide that two was plenty. Interestingly, life has decided that I will be one. First, my husband has had multiple medical conditions, and then, on a cool late August day, I flew into the hot seat as the caretaker of my 36 year old daughter, who had been admitted to the hospital with low hemoglobin. As I walked into the room, her nurse practitioner had arrived to tell her that an oncologist had been called.
At first, we were touched by the caring staff at Halifax Hospital in Port Orange, Florida, near where Elaine lives, but after a biopsy and 3 units of blood, Elaine was sent home. Elaine works for a major national chain and has excellent insurance. We were told while at the hospital that she needed to establish a primary care physician.. Elaine had met Dr. Chew, and she liked him. Especially since he has the perfect credentials for a blood cancer patient, botha s an oncologist and a hematologist, and he had ordered the biopsy. So we looked for a PCP in their network the day after her discharge. Several weren't accepting new patients, but I found one and set an appointment for a couple of weeks away.
Elaine's condition was not good. She could never eat or even drink more than a mouthful or two without vomiting. She had lost over seventy pounds. She was very weak, as her hemoglobin had never reached a normal ten, even with the transfusions. No one from Halifax Hospital nor its related oncology service reached out to Elaine. I was there, making ice cubes from Pedialyte to float in the Gatorade that kept dehydration away. I kept the household, which also included three pets, going.
We began to try to get into see Dr. Chew to find out the results of her biopsy. Was it what everyone suspected...Hodgkin lymphoma? It was a brick wall. The receptionist didn't know what to do with our calls. Meanwhile, Elaine 's lab results were posted in her portal. When she shared them with a physician friend and asked her impression, she said they supported the diagnosis we expected. After days of calls and holds and waiting for a return call, we got an appointment. And then we lost it.
Dr. Chew wasn't able to treat Elaine without a referral from a PCP. There was no point in an appointment just to talk diagnosis if treatment wasn't a part of it. So we called the network PCP's office. I asked to get an appointment sooner, because of the need to start treatment. They offered the Friday preceding the Monday appointment we already had. When I said that I would have to look for a different PCP, she responded brightly that it was a great idea. Then she hoped that I would have a good day. I told her that didn't seem likely. She didn't say anything about that.
I hung up and found a PCP to see Elaine the following day. We ended up waiting 16 days from biopsy to diagnosis. Again, that's with GOOD insurance.
It was an agonizing time. As much as we dreaded chemotherapy, having seen my husband, Ron, go through it 3 times, it was, and is, all we want. To know that, with chemotherapy, Elaine would be able to eat and drink in normal quantities, that the spleen which was pressing on her organs would be shrinking, that a cure could, ultimately, be compromised by the lag between her hospitalization and the beginning of treatment, and to have NO POWER to move this process along was demoralizing. Every day in Cancerland has become a state of crisis, and we didn't even have a firm diagnosis yet.
Wednesday, November 28, 2018
November 28, a day of care
I had a hair appointment today. It's not necessarily a spa day, but it was the defining moment besides Elaine 's first appointment with her recovery coach. Oh, and I decided to communicate with the world. I talked to my brother, Nancy and Susan, plus messaged with Janet. Larry's granddaughter is expecting a child in a few months. We had some medical updates and weather bashing on the calls too. It was nice to feel like people care.
We ordered pizza, so there was no cooking or cleanup. I did run the dogs early in the cold. I cleaned the floors and did 2 loads of laundry. Definitely no spa day, but I felt connected to people in a way I haven't recently.
While I was gone, Elaine and Ron went to Overlook Park. She also assembled the grill, but she's very tired now. It's 8:11.
We ordered pizza, so there was no cooking or cleanup. I did run the dogs early in the cold. I cleaned the floors and did 2 loads of laundry. Definitely no spa day, but I felt connected to people in a way I haven't recently.
While I was gone, Elaine and Ron went to Overlook Park. She also assembled the grill, but she's very tired now. It's 8:11.
Thursday, November 22, 2018
Thanks for giving, thanks forgiving...
It's Thanksgiving. My daughter's dog just barked at me until I gave her one of the chew bones our baby dog was guarding. Ron and Elaine are still in bed. It's 8:00, and Ron and I went to bed at 9:00 last night. It's not necessarily what I want to be doing, but I am still thankful. I am thankful that Ron made that long drive down here to be with us. I am thankful that Elaine had her fourth chemo yesterday, the first one that's on schedule. I am even more pleased that we are one third of the way through this process. That she's able to eat a meal of any kind. That Ron can walk unassisted.
Now the sun is shining. That's awesome, that I have this nice home in Florida. I am not bundled up against a cold rain or worried that the roads will be icy. But I am sad not to be included at the family tables in Buckhannon, Parkland or Charleston. I miss seeing the people who will gather there. I know that they won't miss us in the same way. They might give us a fleeting thought, but they're busy with loved ones who are present.
It's been a strange year. Last Thanksgiving was totally different. Elaine had invited Bobby and Josh over. I was trying to get everything done. I had never seen Josh except in drag. I haven't seen him, either way, since. Bobby came to the hospital when Elaine was diagnosed, but we haven't seen him since. Not exactly a traditional Thanksgiving with people who are part of your past or future.
We drove to Tom's in the evening. Brad and his family were there, as well as my cousin, Karen. We were both snowbirds, away from our husbands. It was her first Thanksgiving without her mother. It was my third. We spent the night together at the beach. Everything was different. It was fun, but it wasn't a typical Thanksgiving. Elaine had to work Friday, so she went home alone.
The year before had been a Charleston Thanksgiving. I made most of the dinner in Huntington, at Daniel 's place, but I served it at GG's sister's place. Everyone who attended was black except for us. It was another unusual Thanksgiving, as was the one before that. I was helping Elaine move to Florida. We ate with my friend, Sue, and her family. I guess unusual is our new normal.
Before, I was often at my brother's with my mother and his family. Or maybe it was a Thanksgiving in WV, fitted around the deer hunting schedule. I just don't have the kinds of traditions one normally thinks of. Christmas dinner has become a restaurant meal lately. I guess all of this is stuff to be thankful for, but it feels kind of lonely. Or maybe it's because I am alone this morning....
Sunday, after Thanksgiving
I stayed home from church today, so I decided to spend some time on gratitude. Why was Thanksgiving so unsatisfactory for me? I had anticipated medical concerns might trump traditional family dinners. I quickly prepared the turkey breast and fixings. We sat down together at the same time we would have if Ron's migraine (never even got a chance to evaluate whether Elaine would have wanted to go) hadn't kept us home. I read my comments from Thursday morning. They're dark, and so was my mood. I didn't want to communicate with anyone. My misery was wrapped around me, and I slept and cleaned up. The next two days were miserable too. Full of misery.
This morning has developed into one of happy banter in the living room. I stopped to see what others had to say about giving thanks when times are tough. Forbes says it's essential to your career. They say it's most important then. They cite betrayal by another as an example. The guy decided to focus on the clear cut chances he must make, based on what he has learned about his new circumstances. He has moved on and is successful, personally and professionally. Not as helpful when your enemy is your daughter's cells.
I switch to psychology. PsychCentral has an article that begins with a religious focus, since gratitude is a relatively recent concern of science. Most interesting to me is the Buddhist concept that it is fundamentally wrong to be grateful only when things go well. The idea is that we reinforce our own selfish desires when we only express gratitude when our desires are fulfilled. Then we grow to expect satisfaction constantly. Buddha says that's the cause of suffering. Whoa. That describes my experience. I have thought of a song lyrics recently, "I learned that getting what you wanted don't leave you satisfied." Yes. It just makes want to repeat that some more times.
Your next step, according to the article, is to count your blessings, publicly if you can. Compliment people, write notes, send messages, call. Make sure you and they know that they matter to you. That's just the opposite of my inclination. I want to pull away from everyone. I don't want to subject them to my misery. I guess I could reconsider that. Then at the end of the day, I am supposed to thank myself for 3 days I demonstrated gratitude.
Now the sun is shining. That's awesome, that I have this nice home in Florida. I am not bundled up against a cold rain or worried that the roads will be icy. But I am sad not to be included at the family tables in Buckhannon, Parkland or Charleston. I miss seeing the people who will gather there. I know that they won't miss us in the same way. They might give us a fleeting thought, but they're busy with loved ones who are present.
It's been a strange year. Last Thanksgiving was totally different. Elaine had invited Bobby and Josh over. I was trying to get everything done. I had never seen Josh except in drag. I haven't seen him, either way, since. Bobby came to the hospital when Elaine was diagnosed, but we haven't seen him since. Not exactly a traditional Thanksgiving with people who are part of your past or future.
We drove to Tom's in the evening. Brad and his family were there, as well as my cousin, Karen. We were both snowbirds, away from our husbands. It was her first Thanksgiving without her mother. It was my third. We spent the night together at the beach. Everything was different. It was fun, but it wasn't a typical Thanksgiving. Elaine had to work Friday, so she went home alone.
The year before had been a Charleston Thanksgiving. I made most of the dinner in Huntington, at Daniel 's place, but I served it at GG's sister's place. Everyone who attended was black except for us. It was another unusual Thanksgiving, as was the one before that. I was helping Elaine move to Florida. We ate with my friend, Sue, and her family. I guess unusual is our new normal.
Before, I was often at my brother's with my mother and his family. Or maybe it was a Thanksgiving in WV, fitted around the deer hunting schedule. I just don't have the kinds of traditions one normally thinks of. Christmas dinner has become a restaurant meal lately. I guess all of this is stuff to be thankful for, but it feels kind of lonely. Or maybe it's because I am alone this morning....
Sunday, after Thanksgiving
I stayed home from church today, so I decided to spend some time on gratitude. Why was Thanksgiving so unsatisfactory for me? I had anticipated medical concerns might trump traditional family dinners. I quickly prepared the turkey breast and fixings. We sat down together at the same time we would have if Ron's migraine (never even got a chance to evaluate whether Elaine would have wanted to go) hadn't kept us home. I read my comments from Thursday morning. They're dark, and so was my mood. I didn't want to communicate with anyone. My misery was wrapped around me, and I slept and cleaned up. The next two days were miserable too. Full of misery.
This morning has developed into one of happy banter in the living room. I stopped to see what others had to say about giving thanks when times are tough. Forbes says it's essential to your career. They say it's most important then. They cite betrayal by another as an example. The guy decided to focus on the clear cut chances he must make, based on what he has learned about his new circumstances. He has moved on and is successful, personally and professionally. Not as helpful when your enemy is your daughter's cells.
I switch to psychology. PsychCentral has an article that begins with a religious focus, since gratitude is a relatively recent concern of science. Most interesting to me is the Buddhist concept that it is fundamentally wrong to be grateful only when things go well. The idea is that we reinforce our own selfish desires when we only express gratitude when our desires are fulfilled. Then we grow to expect satisfaction constantly. Buddha says that's the cause of suffering. Whoa. That describes my experience. I have thought of a song lyrics recently, "I learned that getting what you wanted don't leave you satisfied." Yes. It just makes want to repeat that some more times.
Your next step, according to the article, is to count your blessings, publicly if you can. Compliment people, write notes, send messages, call. Make sure you and they know that they matter to you. That's just the opposite of my inclination. I want to pull away from everyone. I don't want to subject them to my misery. I guess I could reconsider that. Then at the end of the day, I am supposed to thank myself for 3 days I demonstrated gratitude.
Monday, November 19, 2018
November 19, or the gates of hell
I am officially depressed. I could sit here and cry the day away, but I won't. So far, I have mowed the front and back yards, as well as whacked weeds. I took a shower, but that just started the tears. I am hopeless. My life seemed so good as I entered 2018. 2017 began on December 30, 2016, with Ron's accident. It was bad, very bad, but we made it. The wedding began a new chapter, when Ron regained his mobility, and we had that great trip to California. I came down for my first snowbird year, and I found a new life away from the cold and ice.
We also celebrated our 45th anniversary, and the trip to the Keys was heavenly, even though the weather sucked. By then, the undertone of Elaine's illness had been peeking out at me. I was helpless to do anything about that, and we returned home to wait for our granddaughter. I stayed busy, and she finally came on July 12. It was a very special time, but the glow wore off quickly, as I began my troubles with Daniel. He has hurt me, time and again, until I now feel like giving up. Oh, and Elaine 's illness turned out to be cancer.
Today feels like the beginning of a holiday season that will leave me standing outside, peering at the happy families. We are invited to Thanksgiving dinner, but I don't want to go. The easiest part is that we have the perfect excuse. Elaine may or may not be able to go. Sadly, I kind of hope she isn't. I see the holiday stuff, and it just makes me sadder. I am not looking forward to any of it.
I just sent GG a text. I told her that I have paid their car repair bill. That's Christmas. I wish it was just over. I don't want any presents, any decorations, any special foods. I want normal. I won't be getting that.
Ron is supposed to drive down tomorrow. Maybe his presence will help. Maybe it won't. I don't feel like anything is going to get better. Right now I only hope that I can feel well enough to fake it for Elaine 's sake. I know that I have many blessings. It's just hard to feel blessed right now.
We also celebrated our 45th anniversary, and the trip to the Keys was heavenly, even though the weather sucked. By then, the undertone of Elaine's illness had been peeking out at me. I was helpless to do anything about that, and we returned home to wait for our granddaughter. I stayed busy, and she finally came on July 12. It was a very special time, but the glow wore off quickly, as I began my troubles with Daniel. He has hurt me, time and again, until I now feel like giving up. Oh, and Elaine 's illness turned out to be cancer.
Today feels like the beginning of a holiday season that will leave me standing outside, peering at the happy families. We are invited to Thanksgiving dinner, but I don't want to go. The easiest part is that we have the perfect excuse. Elaine may or may not be able to go. Sadly, I kind of hope she isn't. I see the holiday stuff, and it just makes me sadder. I am not looking forward to any of it.
I just sent GG a text. I told her that I have paid their car repair bill. That's Christmas. I wish it was just over. I don't want any presents, any decorations, any special foods. I want normal. I won't be getting that.
Ron is supposed to drive down tomorrow. Maybe his presence will help. Maybe it won't. I don't feel like anything is going to get better. Right now I only hope that I can feel well enough to fake it for Elaine 's sake. I know that I have many blessings. It's just hard to feel blessed right now.
Saturday, November 17, 2018
Update on November 17...including the cruise
First, the daily word thing fell apart. We had used so.many, and the words which remained were difficult to choose. We weren't in the beginning of this journey any more, and the daily words were a great introduction. That part is behind us now.
Further, my thoughts became dominated by the need to prepare for the cruise. I had never been on one, and I was nervous about the while thing. Would I forget something critical? Would I hate cruising but be unable to come home? Would Elaine have a crisis, say, a spiked fever, when I was a thousand miles away?
My cruise companions were not old friends, except for my roommate. Would we all get along?
Somehow I convinced myself that the cruise was actually a day shorter than it really was. So a doctor's appointment had been made that I couldn't attend. Some number of Facebook messages later, my sister-in-law signed on to get Elaine in. Unknown to me, since he lost his cell phone AGAIN, my husband was livid. He was boiling mad at me, but he didn't come driving down immediately either. Glad I was out of the mix. I didn't know of his rage until I was home and heard his angry voice. Yep, he was pissed! What did he think I should do? Throw away hundreds of dollars over 24 hours difference? No.
Before I was even onboard, Elaine had posted how bad she was feeling on Facebook. That didn't help either. Her selfish bitch mother was blithely boarding the Fun Ship while her cancer patient daughter was suffering at home. I had even taken her car, so she was TRAPPED at home. I was the villain all around. Tough. I went anyway.
As it turned out, Elaine was no sicker than usual. The visitors who were scheduled to come on Sunday did. It was all good. Monday's visitor cancelled, because she had a cold. Elaine was alone Monday through Thursday noon when I got in. She was dealing with everything by herself. I don't think that's a bad lesson for her or anyone else. This is a temporary situation. The day will come when I go to West Virginia for months. That's our real life. My living here full time is going to end.
Now, as for the cruise... First of all, I needn't have worried about the group I traveled with. The 7 other ladies were all great. We were always happy to see each other, but we could also go out own way if that is what pleased us. The group dynamic couldn't have been better. I made 6 new friends basically. We hope to do it again sometime.
I took Dramamine like it was breath mints, beginning the day before the cruise and ending it after a full day home. That wasn't pleasant, and it cut down the amount of the always available food I ate and enjoyed. I never even tried the pizza which was available 24 hours a day. I only threw up once, on the dive boat, but I dealt with others who were very ill. I didn't eat anything all day for two of the five days, except for supper. I didn't clean my plate then either.
I only had 3 cocktails on the ship .Sure glad we didn't get the drinks package! I drank all afternoon in Cozumel, but those drinks must have been pretty weak. The food at the beach club was fantastic, though. The dinners on the ship were great, too, as was my Guy Fieri hamburger. The buffet reminded me of Golden Corral. Not as good as I had hoped.
I slept fine on the ship, only waking as we approached port and they changed the engine for that. Otherwise the rocking boat pulled me into peaceful slumber.
I loved having a balcony room, and I stayed out there, reading 2 books and watching the sunset or the stars. Our room was near the rooms of the others in the party, and we were constantly in contact, although we weren't constantly together. It must have been something like living in a dorm. Our fellow passengers were always cordial. It WAS a Fun Ship.
The down side of that could be summed up in the person of Brandon.Our cruise director. His constant over the top enthusiasm wore thin quickly, and the announcements he made over the PA were extremely annoying. I wasn't sure at first that something important wasn't being said, so I stopped what I was doing to listen. It was never anything but another opportunity for us to spend money, so I learned to groan and ignore them.
The islands and the Caribbean surrounding them were gorgeous. I was so pleased that I got to see Sting Ray City, but the sea was so rough that I had to go back on the boat. I threw up, fortunately in the trash can. The captain, who was a blustery South African, said that I should have headed to the back of the boat to "feed the fishes." That was where I was headed, but I didn't make it that far.
The sting rays were everywhere, as promised. I especially liked looking at them through my mask, as they dodged around the couple of hundred people on the sand bar. I touched some, and I watched as the mates held some for us to.look over. I didn't even try to get off the boat at the second stop. No one stayed in long. It was too rough.
We learned lots about life in the Caymans from the crew. We saw several of the invasive green marine iguanas and heard about the attempt to cut down their population to save the native blue iguanas. We heard about the cost of living in the paradise there.
The Beach Club was an outstanding afternoon. It was just what we wanted, with beautiful beach, shaded by palms with a gentle breeze. We had unlimited food and drinks with our waiter, Paco, making sure we never ran out. I got a seaside pedicure, and some of the others got massages. Susan made friends with other travelers, and the rest of us just chilled.
The shows onboard were fantastic. We went to the 80's rock and other rock show. I really wanted to go to the Latin dance one, but it was the day I threw up. I took a Compazine and couldn't keep my eyes open. I slept ten hours! Their performers were excellent! They could sing, and could they dance! We also saw the two comics. The adult only shows were hysterical, but the PG rated one was meh.
Cruise life is not for me. I wouldn't say that I will never go again, but I still like the trips I plan better. Even without the constant threat of nausea, I just prefer nature and quiet to busy, busy, busy.
Since my return, I have taken it easy as I recovered from the seasickness. I forced myself to go to Wal-Mart for supplies, and I walked the dogs plus took a walk in the park looking for the cat who escaped when I put the trash out.
That's another story... We didn't realize she was out until after dark, so we couldn't look for her. By morning I was thinking we might not ever see her again. I called and called, even talked to a neighbor, but nothing. Then I let Rocky out while I put my suitcase in the shed. Rocky was trying to dig under the shed. OMG! That's where the cat was! I called Elaine, and we tried to get her out. I could see her, but she wouldn't come out. We tried poking her with a broomstick. She would move but still not come out. I finally had to get the hose and force her out with water. But now she's home and safe.
So that's it for now. It's Saturday morning, a week later. Chemo is scheduled for Wednesday, and we're praying that it goes as scheduled this time. Ron is coming down Tuesday or Wednesday to be here on Thanksgiving.
Further, my thoughts became dominated by the need to prepare for the cruise. I had never been on one, and I was nervous about the while thing. Would I forget something critical? Would I hate cruising but be unable to come home? Would Elaine have a crisis, say, a spiked fever, when I was a thousand miles away?
My cruise companions were not old friends, except for my roommate. Would we all get along?
Somehow I convinced myself that the cruise was actually a day shorter than it really was. So a doctor's appointment had been made that I couldn't attend. Some number of Facebook messages later, my sister-in-law signed on to get Elaine in. Unknown to me, since he lost his cell phone AGAIN, my husband was livid. He was boiling mad at me, but he didn't come driving down immediately either. Glad I was out of the mix. I didn't know of his rage until I was home and heard his angry voice. Yep, he was pissed! What did he think I should do? Throw away hundreds of dollars over 24 hours difference? No.
Before I was even onboard, Elaine had posted how bad she was feeling on Facebook. That didn't help either. Her selfish bitch mother was blithely boarding the Fun Ship while her cancer patient daughter was suffering at home. I had even taken her car, so she was TRAPPED at home. I was the villain all around. Tough. I went anyway.
As it turned out, Elaine was no sicker than usual. The visitors who were scheduled to come on Sunday did. It was all good. Monday's visitor cancelled, because she had a cold. Elaine was alone Monday through Thursday noon when I got in. She was dealing with everything by herself. I don't think that's a bad lesson for her or anyone else. This is a temporary situation. The day will come when I go to West Virginia for months. That's our real life. My living here full time is going to end.
Now, as for the cruise... First of all, I needn't have worried about the group I traveled with. The 7 other ladies were all great. We were always happy to see each other, but we could also go out own way if that is what pleased us. The group dynamic couldn't have been better. I made 6 new friends basically. We hope to do it again sometime.
I took Dramamine like it was breath mints, beginning the day before the cruise and ending it after a full day home. That wasn't pleasant, and it cut down the amount of the always available food I ate and enjoyed. I never even tried the pizza which was available 24 hours a day. I only threw up once, on the dive boat, but I dealt with others who were very ill. I didn't eat anything all day for two of the five days, except for supper. I didn't clean my plate then either.
I only had 3 cocktails on the ship .Sure glad we didn't get the drinks package! I drank all afternoon in Cozumel, but those drinks must have been pretty weak. The food at the beach club was fantastic, though. The dinners on the ship were great, too, as was my Guy Fieri hamburger. The buffet reminded me of Golden Corral. Not as good as I had hoped.
I slept fine on the ship, only waking as we approached port and they changed the engine for that. Otherwise the rocking boat pulled me into peaceful slumber.
I loved having a balcony room, and I stayed out there, reading 2 books and watching the sunset or the stars. Our room was near the rooms of the others in the party, and we were constantly in contact, although we weren't constantly together. It must have been something like living in a dorm. Our fellow passengers were always cordial. It WAS a Fun Ship.
The down side of that could be summed up in the person of Brandon.Our cruise director. His constant over the top enthusiasm wore thin quickly, and the announcements he made over the PA were extremely annoying. I wasn't sure at first that something important wasn't being said, so I stopped what I was doing to listen. It was never anything but another opportunity for us to spend money, so I learned to groan and ignore them.
The islands and the Caribbean surrounding them were gorgeous. I was so pleased that I got to see Sting Ray City, but the sea was so rough that I had to go back on the boat. I threw up, fortunately in the trash can. The captain, who was a blustery South African, said that I should have headed to the back of the boat to "feed the fishes." That was where I was headed, but I didn't make it that far.
The sting rays were everywhere, as promised. I especially liked looking at them through my mask, as they dodged around the couple of hundred people on the sand bar. I touched some, and I watched as the mates held some for us to.look over. I didn't even try to get off the boat at the second stop. No one stayed in long. It was too rough.
We learned lots about life in the Caymans from the crew. We saw several of the invasive green marine iguanas and heard about the attempt to cut down their population to save the native blue iguanas. We heard about the cost of living in the paradise there.
The Beach Club was an outstanding afternoon. It was just what we wanted, with beautiful beach, shaded by palms with a gentle breeze. We had unlimited food and drinks with our waiter, Paco, making sure we never ran out. I got a seaside pedicure, and some of the others got massages. Susan made friends with other travelers, and the rest of us just chilled.
The shows onboard were fantastic. We went to the 80's rock and other rock show. I really wanted to go to the Latin dance one, but it was the day I threw up. I took a Compazine and couldn't keep my eyes open. I slept ten hours! Their performers were excellent! They could sing, and could they dance! We also saw the two comics. The adult only shows were hysterical, but the PG rated one was meh.
Cruise life is not for me. I wouldn't say that I will never go again, but I still like the trips I plan better. Even without the constant threat of nausea, I just prefer nature and quiet to busy, busy, busy.
Since my return, I have taken it easy as I recovered from the seasickness. I forced myself to go to Wal-Mart for supplies, and I walked the dogs plus took a walk in the park looking for the cat who escaped when I put the trash out.
That's another story... We didn't realize she was out until after dark, so we couldn't look for her. By morning I was thinking we might not ever see her again. I called and called, even talked to a neighbor, but nothing. Then I let Rocky out while I put my suitcase in the shed. Rocky was trying to dig under the shed. OMG! That's where the cat was! I called Elaine, and we tried to get her out. I could see her, but she wouldn't come out. We tried poking her with a broomstick. She would move but still not come out. I finally had to get the hose and force her out with water. But now she's home and safe.
So that's it for now. It's Saturday morning, a week later. Chemo is scheduled for Wednesday, and we're praying that it goes as scheduled this time. Ron is coming down Tuesday or Wednesday to be here on Thanksgiving.
Wednesday, October 3, 2018
The Mindful Caregiver
Mindfulness in Care
10/1 .Volusia County Public Library I have some books to return and some to renew, so I announce that I am going to the library. Elaine asks if I will print the papers for her leave from work. I head for the computer lab, and I spot a shelf of books for caretakers on the way. Later I return to it, where I find The Mindful Caregiver. It's written by a geriatric social worker who was also.primary caregiver for her mother. It looks like solid advice, not the feel-good drivel in some of the other titles. I add it to my stack .
10/2 .Honest .I told Elaine about The Mindful Caregiver, and I looked over the list of caring qualities in the book which I copied onto little slips of paper. I chose honest, and I told her to ask me anything. We discussed how I felt after her announcement that she was leaving work. I saw this as giving up, without even giving the new routine a chance to work .I felt betrayed, uncertain how this arrangement would affect my ability to live here and cope. I was gutted, unable to get past my grief and sadness .Ron was out, so we couldn't talk. I couldn't tell Elaine my concerns initially, because she was so relieved and happy about her choice .So much is out of her control .I couldn't take this one thing away....
I texted with a couple of people .They backed Elaine's choice. I did, too, on some levels. I cried, a lot. I secluded myself in the bedroom, but I eventually had enough of that and came back into the world. That's when we had the honest talk .We also talked about boundaries we need to keep so that we can adjust to the new dynamic
10/3 .Aware. I brought the jar with the care qualities out and showed Elaine some ideas for today's focus .She chose aware .She had said that she feels our current situation is unconventional, not a child caring for an elderly parent or one spouse caring for another. Most of the cases require an acknowledgement that the condition will get worse also .None of these apply here, as Elaine will recover completely as long as she is able to complete the treatment. She will need limited assistance at some times, and I need to back off when she is able to do it herself .She's been so sick that I have done everything .It's not necessarily the best course, long term.
I was also trying to be more aware on our trip to Daytona to see the PA .She says there is definitely no cancer in the home marrow! Great news, but actually what I expected. Also hemoglobin level and other numbers are good .Thank God .I was more aware of our surroundings as we stepped out of the house, a rare event in our world. We took an alternate route, noting changes along the way. The waiting room was blessedly empty, except for one poor woman who couldn't get anyone to explain why she was still waiting .I stood while Elaine had vitals checked and got bloodwork .Aware of the painted rocks on the CMA's desks, I asked and discovered that patients had painted them for the staff .Each was lovely and unique .
We drove through Pollo Tropical on the way home. That is a treat, as we don't have one nearby .Aware now that my leftovers await, I am going to warm some up!
10/4 Proactive. We're preparing for my departure early tomorrow . There are many things to be done .We messaged those who are coming to check on Elaine during my absence .I checked into my flight and discussed pickup with my husband .I am doing laundry, especially bedding since overnight guests will be in my room .I did a little yard work and made soup out of the refrigerator contents I will be cleaning the floors.
I have finished all the parts of The Mindful Caregiver that apply to my situation .The parts about being proactive deal mainly with placing the patient in home or residential care .Not going to happen here .So I searched for resources and found good places online which deal more specifically with parents of young adults who have cancer .I never really considered that many would be married and have spouses who wanted to keep their matters private, even from the patient 's parent .Not happening here either, but we can benefit from considering how we divide the aspects of care .I made a screenshot of the Caregiver 's Bill of Rights for future reference .Yes, all of this is proactive .
10/5 .Adaptable. Damn .I lost my post. Forgot to hit Update .Here's my best recollection .
I got up early to fly home. I was on the plane when I realized that I forgot my earbuds .What a drag .Then they announced a maintenance delay. Fortunately I was adaptable, and the issue was resolved in a few minutes .Meanwhile, Elaine 's first respite carer woke to a violently ill toddler. Elaine found someone else to come by, and it's good that she was adaptable because they didn't arrive until about 6 PM
My house was a wreck after my six week absence. Considering that I left in less than an hour when we found out that Elaine was being admitted to the hospital, so there was much to do .I tackled the most important areas, voicemail and bills, kitchen cleaning, and getting my mammogram plus Ron's prescription .It was necessary to be adaptable so that we could leave sooner if things weren't going well with Elaine .
10/6 Grateful . This was a tall order .We had some pretty deep discussions as we waited for time to go to Charleston to see the kids .Just as we were preparing to leave, Dan called. The baby was sick, so they were taking her to the doctor .Okay, so we're not coming .We can't risk infecting Elaine through either of us .Ron was bitterly disappointed. So, what's to be grateful for? Chris came by, all excited about the duck he killed He stayed for a sandwich and watched the first half of the game with Ron. I am so grateful for him .
I am also grateful to have had the chance to clean that filthy pickup for us to travel in .I got a lot of things ready to take to Florida, which could be extra good since baby's fever seems to have broken .We will decide after her follow up visit whether to go down after all. I am grateful that she wasn't as sick as they feared .
Elaine has had a couple of visitors tonight, even two overnight guests. She's grateful for the distraction and the food they bring.
10/7 Collaborative .I am a slow learner .Not only am I 2 days late, but I have written an entry for this already, which I didn't post and lost.
We waited until Aspen has seen the doctor and been over 24 hours with no fever, and then we went .Janet came before we left, with 2 bags for us to take to Florida. We met Chris and picked up a gift for the baby, so we were collaborative.
The baby was fussy, so keeping her quiet was definitely a collaboration between GG and myself .Ron was dizzy, so he couldn't help it he wanted to. Daniel told us the collaborative nature of his new job as Staff Scientist. Ron and I collaborated on all the driving, since we had a lot more which would be done the next day.
Angel collaborated with Elaine on doing some household tasks before they left . She tried to collaborate with Sherri about clothes, but she got too tired.
Collaboration could go better, in sum .
10/8 Patient . We were up early and on the road by 7:30 in the morning, and we talked to Elaine. She was tired after all the visitors, and we talked about what she was going to eat .
We drove as quickly as was safe, we never stopped to eat, and we got in around 9. It was an uneventful trip, the best you can expect. We were patient, and Elaine was too, although she may have slept more than she should have.
10/9. Gentle. Elaine was pretty insistent that we focus on a gentle return to life in Deltona before tomorrow 's second chemo treatment. She asked for special food and ate more than usual. I don't think my day was so gentle, since I had to deal with things which happened during my absence, unload a truckload of stuff and do some cleaning too.
I was a bit gentle on myself by picking up a rotisserie chicken instead of cooking .I got some special ice cream too. By 8, we are gently fading into bedtime...
10/10 Humble. We had to change our day, so we changed from Dedicated to Humble. It was humbling to find out that our well-planned day changed because of too few white cells. Boom! Like that!
I spent some time reading about humility. It can be a bad thing, like when one person humbles another to prove superiority. One whole line of thought is that pride, humility 's opposite, is the result of original sin and leads to all sorts of bad behavior. So humility is the best?
I am humbled by the futility of trying to think we've got this when the cancer is so clearly in charge. Then you have the system, the insurance, the employer, the hospital and the units within it....It's overwhelming!
10/11. Productive. Elaine was determined to get progress today, since it's not a post-chemo day as expected. The big event was getting a new drivers license. ✔
I can lapse into times where I am not productive, but I consider companionship as a form of productive activity in times like these. I did venture out, taking Ron to the library and adjacent nature center. We did a little business and a little browsing.
I have also done a little cooking, and it's trash day. I still have laundry to put away, and I need to wash the truck. Oh, and we need to video chat with GG and the baby!
10/12 Responsible. Elaine kept with the "getting on with it" theme, and she started by unloading and reloading the dishwasher. It's the first housework she has done, outside of her bedroom.
She also got her Pap smear, something she had neglected for years. She really likes Dr. Gabriella, so I sent her in by herself. That's a responsibility thing too.
We planned an outing, Elaine 's first since the diagnosis, to the movies .Ron wasn't up to the 1:45 show, so we rested and went at 4:45. We enjoyed the movie, and Elaine did well, even drove us there and back. More responsibility.
11/13 Insightful. Elaine liked this, and I agreed that she is getting more able to consider things rather than just reacting from a position of illness. Then she has spent most of the day sapped of her reason by a nasty headache. I sought insight in between tasks today, but I didn't gain much insight about our current situation, except that you can't ever assume much of anything about this situation. Her condition will be what it will be. We just need to observe and be ready when we're needed.
11/14 Respectful. We are choosing to respect, rather than to fight the cancer and its treatment. When we try to force an agenda, it falls apart. We must observe the current conditions and react accordingly. It's even got a football analogy as we watch ESPN with Ron. It's like calling an audible.
We rode with our respectful attitude and got the office cleaned while Elaine fought the miserable headache. It was a pretty good day .Ron watched football, and I read chick lit.
11/15 Hopeful. We are hopeful about Ali's visit. She's staying for 5 days. It's going to be a chance for Ron and me to go to the beach, etc. Elaine can visit with an old friend. Oh, and there's chemo right in the middle. At least, we hope it's a go this time.
right now Ron is trying out the inflatable kayak. Hoping THAT'S going well too.😁
11/16 Considerate. We have 4 people, 4 dogs, and a cat under our roof. Being considerate will be critical. Different sleep and eating habits, different intersts, and one of us with the effects of a life-threatening condition.
It has been a successful day. We went to the beach. Elaine had a good time and ate a whole hoagie! She's been more subdued since, but, then, we all napped! And we managed the dogs. So far we are getting along. Considerate was a good choice.
11/17 Adaptable. We had a different mindset after the no chemo week last time. We were prepared for that possibility that could happen again. With only one chemo, we had to be ready for reactions we hadn't already seen.
Since Ali was here, we had coverage and could get away for a couple of days. We just to wait and see.
Elaine had great lab numbers and chemo went well. I quickly packed and we headed out. Adaptable was good.
Ron and I had a lovely dinner. Elaine and Ali did what they liked.
11/18 Unique. It was, starting at 5 a.m.with a horrible argument that led to a closer understanding of each of our positions in this new reality. I didn't contact anyone, and we only left the condo to eat, swim and walk on the beach. It was unlike any day since Elaine got sick.
11/19 Warm. I started with a sunrise beach walk. It was warm, with no sea breeze as the front moved in. We hung around for a while before going to visit family with a toddler. It was great fun, but Ron developed vertigo, while his medicine was back at the condo. That escalated, and he ended up sleeping away the afternoon. I cleaned and packed, grabbed lunch, and decided to go the point myself. It was raining lightly, but I didn't mind. Then it poured, and I was trapped .I didn't want to swim in a downpour, and I didn't want to walk back in one either. It finally slacked off, and I started back. I tucked my phone in the strap of my swimsuit so I could open the gate. On impulse, I touched the pool water with my foot. It was warm, and it felt good. I WILL go swimming after all! I put my stuff on the table and walked in. I swam for several minutes before I spotted the phone on the bottom of the pool. It was VERY warm! Not good.
11/20 Generous. We were interactive today, both with our guest and with our old friend, Ann, and her roommate. I also had a generous (?) deal from Sprint which resulted in lower monthly bills to counteract the cost of my new phone.
Ron was *AHEM* particularly generous in his contributions to the tone of the day. 😉 Ann was generous with food and drink. Ron joined in generously in the game playing.
11/21 Strong. Ali is gone, and the long haul begins. This isn't going to be about the crises, hopefully, but about trying to get enjoyment during a time with so many challenges. It's about patience and perseverance. You have to be strong to do all the other things that make life worthwhile, even in the face of setbacks and suffering.
11/22 Observant. Both Elaine and I were down this morning. Digestive issues. It was hard to relate to most of the terms. We considered hopeful, as a repeat, but observant was less commitment. We were open to the possibility that things would improve, and we were content to sit back and relax until we observed improvement. We watched a movie while we waited, then a show Elaine likes. By evening, we felt like ordering pizza.
11/23 Bold. We decided to step out on Ron's last day here for a couple of weeks. Elaine had gone to the dentist for her broken tooth, and she found that she needs a root canal. Ron dreads the long trip and the lonely house. I know that our time in Cancerland has only just begun. We face week after week of treatment and the effects of both of and the cancer. Elaine will be hurting, and I will be a part of the whole experience.
Bold took us away from the everyday worries. We made stops at a few places with lovely water views and saw manatees feeding right offshore. We drove the wildlife tour to see lots of wading birds and ducks, along with lots of alligators. We ate at Dixie Crossroads. Elaine was tired, but it was a good day.
11/24 Fearless. Ron left, driving over 900 miles in one day by himself. I took the dogs to Palm Bluff. We went to the hospital for bloodwork. Afterwards we ate at Cheddars. m
I worked on laundry. We watched Dreamgirls and played games. Well, it wasn't scary, but it was what it was.
10/25 Resilient. I am not. We chose the word after I went to Wal-Mart for an oil change. It will be 3 hours, she says. I ask if there's a better time. No guarantees, she says, but noon is sometimes better. I am thinking, okay, I will go home and try again later. I call at 11....still 3 hours. Okay, I will find somewhere else. I do, I make a 4 PM appointment.
While waiting for appointment, I start cleaning. I ask Elaine about a friend, and her reply sets me off on a trail that leads to an unfortunate Facebook post. I write that people who say they care about the seriously ill should demonstrate it. I use caps to emphasize my dissatisfaction with those who live nearby but never visit. I am specifically thinking of the friend I asked about of course. But the truth is that none of those who came rushing to the hospital have visited in the 2 months since. Elaine defends the friend, saying she was there when we really needed her. No. She was there for the drama, but none of her friends have proven to be there when she needs them. Zero.
We go for CT scan, we get handicapped placard, we even pick up prescription. No big deal, but I am tired. Lyme disease tired. I lay in bed until time to go. Drive to garage. Guy comes in and says he's alone. Got to finish Mustang, and he will be right with me. I wait. Guy with Mustang, his wife, and manager's wife with 3 kids come in. There aren't enough seats. Guy is super chatty. Elicits life story from manager 's wife. Not pretty. Finally guy pays for Mustang and leaves. It's been an hour. Manager says my oil is draining. Okay.
Phone rings. That never happens. It's Ron, wanting to know do I want good news or bad? Good is fish he caught. Bad is tree has fallen on roof. Wow! Pretty bad, right? Manager comes in. I tell Ron that I need to pay. He's all confused, even though I started conversation by saying I was at oil change place. Finally convince him to hang up. Go to counter, phone rings again. Elaine, of course. Tell her I'm checking out. She says call when you're done. I wait and wait, but manager wants to dissect Deltona. I am interested, but I am worried about Elaine. It's 5:30 when I get out of there. Hour and a half in unpleasant circumstances waiting when I made an appointment!
Drive to intersection and call Elaine. Wait! Not where I thought I was! Turn around twice, because I can't find the bank. Discover that Elaine is craving specific bakery item at Publix. Still lost, but now heading in right direction, I try to find bank on map. New phone won't display map. I give up and go home. No food, no bank, just storm in and inform Elaine that I am done. Ask her to call Ron. My fondest hope is that I will not be forced to interact with humans (or dogs) for the remainder of this day.
I have spent some time alone now. Elaine went out, came back and alerted me that she had made pasta. Okay, I said. I am still not ready for humans.
I had been reading about resilience. Checked a couple of dictionary definitions which focus on materials which aren't easily damaged. I switched to Psychology Today. They focus on the characteristics of resilient people. A special emphasis is placed on people who grew up in dysfunctional families. They feel that some children are resilient in that they find others who meet their needs. They know that they can talk about their problems with people who care. They are introspective, but they also know where to go for support. They also have faith and hope. They care about others, but they also believe in themselves. They have good self-esteem.
I deleted the Facebook post. I won't check it again tonight, and I feel that I should spend even less time there. I detect a need for attention that isn't good for me. My post elicited guilt from unintended readers, and, of course, I knew that the ones I would like to change their behavior won't, and there's not a damn thing that I can do about that. I feel very alone, and I guess I projected that into Elaine. I wouldn't ask for help for myself, but the Mom in me could do that for Elaine.
So maybe I do have resilience most days. Today was not a good day for me. I can honor my feelings, respect that I don't always have to be strong, and then move on. That's resilience too.
10/26 Heartful. I went to a hair appointment, so we chose this word later in the day. When we chose it, I was thinking more about being responsive to Elaine 's heart, but it ended up being more indulgent than I intended. That's not said in criticism, it evolved naturally and it was all good. We did whatever our hearts desired. We take our pleasures where we can in Cancerland.
10/27 Attentive. We have spent this Saturday much as people outside Cancerland do. We have done outside chores and a cookout. We are responding attentively to the changing weather (it's not hot!) and the needs of our home.
10/28 Willing. I was willing to do whatever Elaine wanted. We took a scenic boat ride. We went to eat at the place she chose. We played games and watched tv. Very laid back afternoon followed a busy morning.
10/29 Joyful. Janet is here, so we chose joy. We're enjoying our night together before she goes to her condo. She's coming back before returning home.
10/30 Cooperative. Janet paid for our breakfast before I drove her to her condo. Elaine was planning to come along, but she didn't feel up to it. Janet and I enjoyed her pool before I drive back.
10/31 Supportive. Another disappointing day as Elaine's neutrophils were too low for treatment. We were shocked. It seems that her body isn't processing the drugs as quickly as we hoped. Ttreatment is delayed another week. So is her root canal. It's tough, but we get great messages of support from friends and family.
11/1 Efficient It's Elaine's #1 shopping day of the year! Halloween clearance sales! We shipped 3 stores, had a nice lunch, and she dressed the dogs and herself up for photos. I also did laundry and visited the library.
11/2 Kind. Elaine is dragging today. She's tired, so she's being kind to her body. I kindly assembled all of the cards she has gotten into one display. People are so kind to send us their best wis. So many of the cards are right on the nose too! I'm especially find of the ones which talk about good and bad days, not always feeling strong, and the one about trea. There are 25 store bought cards, with only two the same.
11/3 Faithful. We didn't go anywhere or do anything. There was quite a storm in the afternoon, so we sat outside on the patio to observe. There was a mighty power in it. It was the night to make the clocks fall back, so I have spent a lot of days observing morning and evening times, which will be changing. It was just another day in the progression, as we wait for treatment again, we hope, in Wednesday. We have to keep the faith, even when it's boring.
11/4 Unflappable. We have rejected this one several times. Definitely felt flappable.. able to be let down by the results of this awful disease. The delays in starting treatment, the stage III, the ER visit, the weeks with no treatment due to bloodwork, the headache, motion sickness, and on and on. But today, Elaine says it's time to go with whatever cancer or its treatment brings us. I have a little bug, and I am trying not to let that get me either. I even went to church, which I haven't done in many weeks.
The Cancerland game is taking shape. At Elaine's insistence, cancer will be the captain of a ship we travel on. Treatment is the river. I insisted on a dark forest before players get to.the ship. That represents the time before diagnosis. The goal, of course is remission. There will be many twists and turns, of course. Now that the get well care display is done, I can begin the physical construction of the game.
11/5 THIS IS WHERE WE TOOK A BREAK FROM THE WORDS.
We went to the movies to see Christopher Robin at my request. It was cute. We went shopping after, snagging several good buys but ultimately overdoing Elaine's stamina. That was an emotional setback, as well as a physical one. Once We were home, Elaine recovered pretty quickly.
11/6 We thought we might go after Janet today, but her friend came over. It was Election Day, and I stood in line with her to vote until she went in. Then I hung out with the mayor and her opponent and their spouses until she was done. That was interesting! That was quite a trial, and Elaine pretty much spent the day recovering while I tackled yard work.
11/7 CHEMO #3 IS DONE! My dad died on the day of his scheduled #3. We had an appointment for 7:30, but we waited until 10 until we knew it was really happening. By then, I was overwrought. I just couldn't get comfortable until I knew it was happening. I cried in the treatment room and again at home when it was over. I couldn't eat. I was bitchy with people. Not a good day.
Janet and Lynn came in the evening. We had a nice visit. We looked at a lot of our pictures from the cloud.
11/8 We made a Publix run so Elaine could gather provisions for the time I am gone. I leave early Saturday morning. I will return on Wednesday, and we able to schedule her appointment for Thursday.
We may overdone it when we took a scenic drive into Orange County after lunch. It's happening more, as she explores the limitations of her condition. It's fluid and changing. I am thinking that she isn't trying hard enough of she doesn't occasionally cross that line.
10/1 .Volusia County Public Library I have some books to return and some to renew, so I announce that I am going to the library. Elaine asks if I will print the papers for her leave from work. I head for the computer lab, and I spot a shelf of books for caretakers on the way. Later I return to it, where I find The Mindful Caregiver. It's written by a geriatric social worker who was also.primary caregiver for her mother. It looks like solid advice, not the feel-good drivel in some of the other titles. I add it to my stack .
10/2 .Honest .I told Elaine about The Mindful Caregiver, and I looked over the list of caring qualities in the book which I copied onto little slips of paper. I chose honest, and I told her to ask me anything. We discussed how I felt after her announcement that she was leaving work. I saw this as giving up, without even giving the new routine a chance to work .I felt betrayed, uncertain how this arrangement would affect my ability to live here and cope. I was gutted, unable to get past my grief and sadness .Ron was out, so we couldn't talk. I couldn't tell Elaine my concerns initially, because she was so relieved and happy about her choice .So much is out of her control .I couldn't take this one thing away....
I texted with a couple of people .They backed Elaine's choice. I did, too, on some levels. I cried, a lot. I secluded myself in the bedroom, but I eventually had enough of that and came back into the world. That's when we had the honest talk .We also talked about boundaries we need to keep so that we can adjust to the new dynamic
10/3 .Aware. I brought the jar with the care qualities out and showed Elaine some ideas for today's focus .She chose aware .She had said that she feels our current situation is unconventional, not a child caring for an elderly parent or one spouse caring for another. Most of the cases require an acknowledgement that the condition will get worse also .None of these apply here, as Elaine will recover completely as long as she is able to complete the treatment. She will need limited assistance at some times, and I need to back off when she is able to do it herself .She's been so sick that I have done everything .It's not necessarily the best course, long term.
I was also trying to be more aware on our trip to Daytona to see the PA .She says there is definitely no cancer in the home marrow! Great news, but actually what I expected. Also hemoglobin level and other numbers are good .Thank God .I was more aware of our surroundings as we stepped out of the house, a rare event in our world. We took an alternate route, noting changes along the way. The waiting room was blessedly empty, except for one poor woman who couldn't get anyone to explain why she was still waiting .I stood while Elaine had vitals checked and got bloodwork .Aware of the painted rocks on the CMA's desks, I asked and discovered that patients had painted them for the staff .Each was lovely and unique .
We drove through Pollo Tropical on the way home. That is a treat, as we don't have one nearby .Aware now that my leftovers await, I am going to warm some up!
10/4 Proactive. We're preparing for my departure early tomorrow . There are many things to be done .We messaged those who are coming to check on Elaine during my absence .I checked into my flight and discussed pickup with my husband .I am doing laundry, especially bedding since overnight guests will be in my room .I did a little yard work and made soup out of the refrigerator contents I will be cleaning the floors.
I have finished all the parts of The Mindful Caregiver that apply to my situation .The parts about being proactive deal mainly with placing the patient in home or residential care .Not going to happen here .So I searched for resources and found good places online which deal more specifically with parents of young adults who have cancer .I never really considered that many would be married and have spouses who wanted to keep their matters private, even from the patient 's parent .Not happening here either, but we can benefit from considering how we divide the aspects of care .I made a screenshot of the Caregiver 's Bill of Rights for future reference .Yes, all of this is proactive .
10/5 .Adaptable. Damn .I lost my post. Forgot to hit Update .Here's my best recollection .
I got up early to fly home. I was on the plane when I realized that I forgot my earbuds .What a drag .Then they announced a maintenance delay. Fortunately I was adaptable, and the issue was resolved in a few minutes .Meanwhile, Elaine 's first respite carer woke to a violently ill toddler. Elaine found someone else to come by, and it's good that she was adaptable because they didn't arrive until about 6 PM
My house was a wreck after my six week absence. Considering that I left in less than an hour when we found out that Elaine was being admitted to the hospital, so there was much to do .I tackled the most important areas, voicemail and bills, kitchen cleaning, and getting my mammogram plus Ron's prescription .It was necessary to be adaptable so that we could leave sooner if things weren't going well with Elaine .
10/6 Grateful . This was a tall order .We had some pretty deep discussions as we waited for time to go to Charleston to see the kids .Just as we were preparing to leave, Dan called. The baby was sick, so they were taking her to the doctor .Okay, so we're not coming .We can't risk infecting Elaine through either of us .Ron was bitterly disappointed. So, what's to be grateful for? Chris came by, all excited about the duck he killed He stayed for a sandwich and watched the first half of the game with Ron. I am so grateful for him .
I am also grateful to have had the chance to clean that filthy pickup for us to travel in .I got a lot of things ready to take to Florida, which could be extra good since baby's fever seems to have broken .We will decide after her follow up visit whether to go down after all. I am grateful that she wasn't as sick as they feared .
Elaine has had a couple of visitors tonight, even two overnight guests. She's grateful for the distraction and the food they bring.
10/7 Collaborative .I am a slow learner .Not only am I 2 days late, but I have written an entry for this already, which I didn't post and lost.
We waited until Aspen has seen the doctor and been over 24 hours with no fever, and then we went .Janet came before we left, with 2 bags for us to take to Florida. We met Chris and picked up a gift for the baby, so we were collaborative.
The baby was fussy, so keeping her quiet was definitely a collaboration between GG and myself .Ron was dizzy, so he couldn't help it he wanted to. Daniel told us the collaborative nature of his new job as Staff Scientist. Ron and I collaborated on all the driving, since we had a lot more which would be done the next day.
Angel collaborated with Elaine on doing some household tasks before they left . She tried to collaborate with Sherri about clothes, but she got too tired.
Collaboration could go better, in sum .
10/8 Patient . We were up early and on the road by 7:30 in the morning, and we talked to Elaine. She was tired after all the visitors, and we talked about what she was going to eat .
We drove as quickly as was safe, we never stopped to eat, and we got in around 9. It was an uneventful trip, the best you can expect. We were patient, and Elaine was too, although she may have slept more than she should have.
10/9. Gentle. Elaine was pretty insistent that we focus on a gentle return to life in Deltona before tomorrow 's second chemo treatment. She asked for special food and ate more than usual. I don't think my day was so gentle, since I had to deal with things which happened during my absence, unload a truckload of stuff and do some cleaning too.
I was a bit gentle on myself by picking up a rotisserie chicken instead of cooking .I got some special ice cream too. By 8, we are gently fading into bedtime...
10/10 Humble. We had to change our day, so we changed from Dedicated to Humble. It was humbling to find out that our well-planned day changed because of too few white cells. Boom! Like that!
I spent some time reading about humility. It can be a bad thing, like when one person humbles another to prove superiority. One whole line of thought is that pride, humility 's opposite, is the result of original sin and leads to all sorts of bad behavior. So humility is the best?
I am humbled by the futility of trying to think we've got this when the cancer is so clearly in charge. Then you have the system, the insurance, the employer, the hospital and the units within it....It's overwhelming!
10/11. Productive. Elaine was determined to get progress today, since it's not a post-chemo day as expected. The big event was getting a new drivers license. ✔
I can lapse into times where I am not productive, but I consider companionship as a form of productive activity in times like these. I did venture out, taking Ron to the library and adjacent nature center. We did a little business and a little browsing.
I have also done a little cooking, and it's trash day. I still have laundry to put away, and I need to wash the truck. Oh, and we need to video chat with GG and the baby!
10/12 Responsible. Elaine kept with the "getting on with it" theme, and she started by unloading and reloading the dishwasher. It's the first housework she has done, outside of her bedroom.
She also got her Pap smear, something she had neglected for years. She really likes Dr. Gabriella, so I sent her in by herself. That's a responsibility thing too.
We planned an outing, Elaine 's first since the diagnosis, to the movies .Ron wasn't up to the 1:45 show, so we rested and went at 4:45. We enjoyed the movie, and Elaine did well, even drove us there and back. More responsibility.
11/13 Insightful. Elaine liked this, and I agreed that she is getting more able to consider things rather than just reacting from a position of illness. Then she has spent most of the day sapped of her reason by a nasty headache. I sought insight in between tasks today, but I didn't gain much insight about our current situation, except that you can't ever assume much of anything about this situation. Her condition will be what it will be. We just need to observe and be ready when we're needed.
11/14 Respectful. We are choosing to respect, rather than to fight the cancer and its treatment. When we try to force an agenda, it falls apart. We must observe the current conditions and react accordingly. It's even got a football analogy as we watch ESPN with Ron. It's like calling an audible.
We rode with our respectful attitude and got the office cleaned while Elaine fought the miserable headache. It was a pretty good day .Ron watched football, and I read chick lit.
11/15 Hopeful. We are hopeful about Ali's visit. She's staying for 5 days. It's going to be a chance for Ron and me to go to the beach, etc. Elaine can visit with an old friend. Oh, and there's chemo right in the middle. At least, we hope it's a go this time.
right now Ron is trying out the inflatable kayak. Hoping THAT'S going well too.😁
11/16 Considerate. We have 4 people, 4 dogs, and a cat under our roof. Being considerate will be critical. Different sleep and eating habits, different intersts, and one of us with the effects of a life-threatening condition.
It has been a successful day. We went to the beach. Elaine had a good time and ate a whole hoagie! She's been more subdued since, but, then, we all napped! And we managed the dogs. So far we are getting along. Considerate was a good choice.
11/17 Adaptable. We had a different mindset after the no chemo week last time. We were prepared for that possibility that could happen again. With only one chemo, we had to be ready for reactions we hadn't already seen.
Since Ali was here, we had coverage and could get away for a couple of days. We just to wait and see.
Elaine had great lab numbers and chemo went well. I quickly packed and we headed out. Adaptable was good.
Ron and I had a lovely dinner. Elaine and Ali did what they liked.
11/18 Unique. It was, starting at 5 a.m.with a horrible argument that led to a closer understanding of each of our positions in this new reality. I didn't contact anyone, and we only left the condo to eat, swim and walk on the beach. It was unlike any day since Elaine got sick.
11/19 Warm. I started with a sunrise beach walk. It was warm, with no sea breeze as the front moved in. We hung around for a while before going to visit family with a toddler. It was great fun, but Ron developed vertigo, while his medicine was back at the condo. That escalated, and he ended up sleeping away the afternoon. I cleaned and packed, grabbed lunch, and decided to go the point myself. It was raining lightly, but I didn't mind. Then it poured, and I was trapped .I didn't want to swim in a downpour, and I didn't want to walk back in one either. It finally slacked off, and I started back. I tucked my phone in the strap of my swimsuit so I could open the gate. On impulse, I touched the pool water with my foot. It was warm, and it felt good. I WILL go swimming after all! I put my stuff on the table and walked in. I swam for several minutes before I spotted the phone on the bottom of the pool. It was VERY warm! Not good.
11/20 Generous. We were interactive today, both with our guest and with our old friend, Ann, and her roommate. I also had a generous (?) deal from Sprint which resulted in lower monthly bills to counteract the cost of my new phone.
Ron was *AHEM* particularly generous in his contributions to the tone of the day. 😉 Ann was generous with food and drink. Ron joined in generously in the game playing.
11/21 Strong. Ali is gone, and the long haul begins. This isn't going to be about the crises, hopefully, but about trying to get enjoyment during a time with so many challenges. It's about patience and perseverance. You have to be strong to do all the other things that make life worthwhile, even in the face of setbacks and suffering.
11/22 Observant. Both Elaine and I were down this morning. Digestive issues. It was hard to relate to most of the terms. We considered hopeful, as a repeat, but observant was less commitment. We were open to the possibility that things would improve, and we were content to sit back and relax until we observed improvement. We watched a movie while we waited, then a show Elaine likes. By evening, we felt like ordering pizza.
11/23 Bold. We decided to step out on Ron's last day here for a couple of weeks. Elaine had gone to the dentist for her broken tooth, and she found that she needs a root canal. Ron dreads the long trip and the lonely house. I know that our time in Cancerland has only just begun. We face week after week of treatment and the effects of both of and the cancer. Elaine will be hurting, and I will be a part of the whole experience.
Bold took us away from the everyday worries. We made stops at a few places with lovely water views and saw manatees feeding right offshore. We drove the wildlife tour to see lots of wading birds and ducks, along with lots of alligators. We ate at Dixie Crossroads. Elaine was tired, but it was a good day.
11/24 Fearless. Ron left, driving over 900 miles in one day by himself. I took the dogs to Palm Bluff. We went to the hospital for bloodwork. Afterwards we ate at Cheddars. m
I worked on laundry. We watched Dreamgirls and played games. Well, it wasn't scary, but it was what it was.
10/25 Resilient. I am not. We chose the word after I went to Wal-Mart for an oil change. It will be 3 hours, she says. I ask if there's a better time. No guarantees, she says, but noon is sometimes better. I am thinking, okay, I will go home and try again later. I call at 11....still 3 hours. Okay, I will find somewhere else. I do, I make a 4 PM appointment.
While waiting for appointment, I start cleaning. I ask Elaine about a friend, and her reply sets me off on a trail that leads to an unfortunate Facebook post. I write that people who say they care about the seriously ill should demonstrate it. I use caps to emphasize my dissatisfaction with those who live nearby but never visit. I am specifically thinking of the friend I asked about of course. But the truth is that none of those who came rushing to the hospital have visited in the 2 months since. Elaine defends the friend, saying she was there when we really needed her. No. She was there for the drama, but none of her friends have proven to be there when she needs them. Zero.
We go for CT scan, we get handicapped placard, we even pick up prescription. No big deal, but I am tired. Lyme disease tired. I lay in bed until time to go. Drive to garage. Guy comes in and says he's alone. Got to finish Mustang, and he will be right with me. I wait. Guy with Mustang, his wife, and manager's wife with 3 kids come in. There aren't enough seats. Guy is super chatty. Elicits life story from manager 's wife. Not pretty. Finally guy pays for Mustang and leaves. It's been an hour. Manager says my oil is draining. Okay.
Phone rings. That never happens. It's Ron, wanting to know do I want good news or bad? Good is fish he caught. Bad is tree has fallen on roof. Wow! Pretty bad, right? Manager comes in. I tell Ron that I need to pay. He's all confused, even though I started conversation by saying I was at oil change place. Finally convince him to hang up. Go to counter, phone rings again. Elaine, of course. Tell her I'm checking out. She says call when you're done. I wait and wait, but manager wants to dissect Deltona. I am interested, but I am worried about Elaine. It's 5:30 when I get out of there. Hour and a half in unpleasant circumstances waiting when I made an appointment!
Drive to intersection and call Elaine. Wait! Not where I thought I was! Turn around twice, because I can't find the bank. Discover that Elaine is craving specific bakery item at Publix. Still lost, but now heading in right direction, I try to find bank on map. New phone won't display map. I give up and go home. No food, no bank, just storm in and inform Elaine that I am done. Ask her to call Ron. My fondest hope is that I will not be forced to interact with humans (or dogs) for the remainder of this day.
I have spent some time alone now. Elaine went out, came back and alerted me that she had made pasta. Okay, I said. I am still not ready for humans.
I had been reading about resilience. Checked a couple of dictionary definitions which focus on materials which aren't easily damaged. I switched to Psychology Today. They focus on the characteristics of resilient people. A special emphasis is placed on people who grew up in dysfunctional families. They feel that some children are resilient in that they find others who meet their needs. They know that they can talk about their problems with people who care. They are introspective, but they also know where to go for support. They also have faith and hope. They care about others, but they also believe in themselves. They have good self-esteem.
I deleted the Facebook post. I won't check it again tonight, and I feel that I should spend even less time there. I detect a need for attention that isn't good for me. My post elicited guilt from unintended readers, and, of course, I knew that the ones I would like to change their behavior won't, and there's not a damn thing that I can do about that. I feel very alone, and I guess I projected that into Elaine. I wouldn't ask for help for myself, but the Mom in me could do that for Elaine.
So maybe I do have resilience most days. Today was not a good day for me. I can honor my feelings, respect that I don't always have to be strong, and then move on. That's resilience too.
10/26 Heartful. I went to a hair appointment, so we chose this word later in the day. When we chose it, I was thinking more about being responsive to Elaine 's heart, but it ended up being more indulgent than I intended. That's not said in criticism, it evolved naturally and it was all good. We did whatever our hearts desired. We take our pleasures where we can in Cancerland.
10/27 Attentive. We have spent this Saturday much as people outside Cancerland do. We have done outside chores and a cookout. We are responding attentively to the changing weather (it's not hot!) and the needs of our home.
10/28 Willing. I was willing to do whatever Elaine wanted. We took a scenic boat ride. We went to eat at the place she chose. We played games and watched tv. Very laid back afternoon followed a busy morning.
10/29 Joyful. Janet is here, so we chose joy. We're enjoying our night together before she goes to her condo. She's coming back before returning home.
10/30 Cooperative. Janet paid for our breakfast before I drove her to her condo. Elaine was planning to come along, but she didn't feel up to it. Janet and I enjoyed her pool before I drive back.
10/31 Supportive. Another disappointing day as Elaine's neutrophils were too low for treatment. We were shocked. It seems that her body isn't processing the drugs as quickly as we hoped. Ttreatment is delayed another week. So is her root canal. It's tough, but we get great messages of support from friends and family.
11/1 Efficient It's Elaine's #1 shopping day of the year! Halloween clearance sales! We shipped 3 stores, had a nice lunch, and she dressed the dogs and herself up for photos. I also did laundry and visited the library.
11/2 Kind. Elaine is dragging today. She's tired, so she's being kind to her body. I kindly assembled all of the cards she has gotten into one display. People are so kind to send us their best wis. So many of the cards are right on the nose too! I'm especially find of the ones which talk about good and bad days, not always feeling strong, and the one about trea. There are 25 store bought cards, with only two the same.
11/3 Faithful. We didn't go anywhere or do anything. There was quite a storm in the afternoon, so we sat outside on the patio to observe. There was a mighty power in it. It was the night to make the clocks fall back, so I have spent a lot of days observing morning and evening times, which will be changing. It was just another day in the progression, as we wait for treatment again, we hope, in Wednesday. We have to keep the faith, even when it's boring.
11/4 Unflappable. We have rejected this one several times. Definitely felt flappable.. able to be let down by the results of this awful disease. The delays in starting treatment, the stage III, the ER visit, the weeks with no treatment due to bloodwork, the headache, motion sickness, and on and on. But today, Elaine says it's time to go with whatever cancer or its treatment brings us. I have a little bug, and I am trying not to let that get me either. I even went to church, which I haven't done in many weeks.
The Cancerland game is taking shape. At Elaine's insistence, cancer will be the captain of a ship we travel on. Treatment is the river. I insisted on a dark forest before players get to.the ship. That represents the time before diagnosis. The goal, of course is remission. There will be many twists and turns, of course. Now that the get well care display is done, I can begin the physical construction of the game.
11/5 THIS IS WHERE WE TOOK A BREAK FROM THE WORDS.
We went to the movies to see Christopher Robin at my request. It was cute. We went shopping after, snagging several good buys but ultimately overdoing Elaine's stamina. That was an emotional setback, as well as a physical one. Once We were home, Elaine recovered pretty quickly.
11/6 We thought we might go after Janet today, but her friend came over. It was Election Day, and I stood in line with her to vote until she went in. Then I hung out with the mayor and her opponent and their spouses until she was done. That was interesting! That was quite a trial, and Elaine pretty much spent the day recovering while I tackled yard work.
11/7 CHEMO #3 IS DONE! My dad died on the day of his scheduled #3. We had an appointment for 7:30, but we waited until 10 until we knew it was really happening. By then, I was overwrought. I just couldn't get comfortable until I knew it was happening. I cried in the treatment room and again at home when it was over. I couldn't eat. I was bitchy with people. Not a good day.
Janet and Lynn came in the evening. We had a nice visit. We looked at a lot of our pictures from the cloud.
11/8 We made a Publix run so Elaine could gather provisions for the time I am gone. I leave early Saturday morning. I will return on Wednesday, and we able to schedule her appointment for Thursday.
We may overdone it when we took a scenic drive into Orange County after lunch. It's happening more, as she explores the limitations of her condition. It's fluid and changing. I am thinking that she isn't trying hard enough of she doesn't occasionally cross that line.
Friday, February 9, 2018
Memorial
Marge
Cathy and I recently visited the prep school Marge graduated from in Florida. While we were there, Cathy described her mother to the guides as the last of her generation. That got me thinking about what is defined by that.
Marge certainly didn't grow up in the typical American midwestern home of her day. She was the only child of a busy working mom who divorced her father while she was at The Casements. Marge must have felt out of place in a time when post-war Americans were building their futures so centered on home and family.
And then she met her Al, and anything was possible. They were young, bright and ambitious. They worked as a team while Al's career sent him across the country and the world. But Al's world was centered on Marge and on the loving vision they shared. He knew that Marge had things just right at home; that no matter how far he traveled or how long he was gone, that no matter where IBM sent him next, Marge would be there ready to welcome him into an oasis of order. Marge was that woman who sat down with a calendar and recipes and made a monthly menu. She organized a grocery list from that, and she bought what was needed to be ready for each evening's dinner. It's nothing like the homes of today, where moms hustle in and juggle schedules for the kids, maybe serving food from the drive through or the microwave.
When we lost Al suddenly and unexpectedly, Marge's world was turned upside down. My mother and I traveled across the country to be with her and her family as they began to deal with the new reality of life without her soul mate. Marge was frail, and I don't think any of us expected her to do well. We knew how much she missed Al, and her physical health wasn't good besides. I know that I believed she would soon join Al in heaven.
Marge had the fighting spirit of that young girl inside her, though, and with the daily love and care supervised by Cathy and by Ron, she did get better. She and Cathy became closer and closer. She always knew that Ron was there, even when Cathy was away, and while she might grumble at him on some days, he would come back, day after day, for whatever she needed.
My husband and I last saw Marge in September. I was amazed by her strength and her clarity of mind. We sat and visited. She gave me the Marge rundown on all the latest in her family, and she sent us off to Ron when she was done. This was the strong lady, a member of the Greatest Generation, who knew with certainty that she had done her best, had left a strong legacy of work and family to the next generation and to her grandchildren and great-grandchildren. This was a woman of faith, who was certain that she would be reunited with the love of her life in eternity.
We grieve with the rest of the family, especially with Ron and Cathy, who miss Marge on a daily basis, and with her friends, but we also celebrate with the faith that Al and Marge are together, sharing a laugh over old times and drawing strength and comfort from being together again. Farewell, dear Marge. We will meet again in glory.
Cathy and I recently visited the prep school Marge graduated from in Florida. While we were there, Cathy described her mother to the guides as the last of her generation. That got me thinking about what is defined by that.
Marge certainly didn't grow up in the typical American midwestern home of her day. She was the only child of a busy working mom who divorced her father while she was at The Casements. Marge must have felt out of place in a time when post-war Americans were building their futures so centered on home and family.
And then she met her Al, and anything was possible. They were young, bright and ambitious. They worked as a team while Al's career sent him across the country and the world. But Al's world was centered on Marge and on the loving vision they shared. He knew that Marge had things just right at home; that no matter how far he traveled or how long he was gone, that no matter where IBM sent him next, Marge would be there ready to welcome him into an oasis of order. Marge was that woman who sat down with a calendar and recipes and made a monthly menu. She organized a grocery list from that, and she bought what was needed to be ready for each evening's dinner. It's nothing like the homes of today, where moms hustle in and juggle schedules for the kids, maybe serving food from the drive through or the microwave.
When we lost Al suddenly and unexpectedly, Marge's world was turned upside down. My mother and I traveled across the country to be with her and her family as they began to deal with the new reality of life without her soul mate. Marge was frail, and I don't think any of us expected her to do well. We knew how much she missed Al, and her physical health wasn't good besides. I know that I believed she would soon join Al in heaven.
Marge had the fighting spirit of that young girl inside her, though, and with the daily love and care supervised by Cathy and by Ron, she did get better. She and Cathy became closer and closer. She always knew that Ron was there, even when Cathy was away, and while she might grumble at him on some days, he would come back, day after day, for whatever she needed.
My husband and I last saw Marge in September. I was amazed by her strength and her clarity of mind. We sat and visited. She gave me the Marge rundown on all the latest in her family, and she sent us off to Ron when she was done. This was the strong lady, a member of the Greatest Generation, who knew with certainty that she had done her best, had left a strong legacy of work and family to the next generation and to her grandchildren and great-grandchildren. This was a woman of faith, who was certain that she would be reunited with the love of her life in eternity.
We grieve with the rest of the family, especially with Ron and Cathy, who miss Marge on a daily basis, and with her friends, but we also celebrate with the faith that Al and Marge are together, sharing a laugh over old times and drawing strength and comfort from being together again. Farewell, dear Marge. We will meet again in glory.
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