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.
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