October sucks.
FIRST - to any members of my family reading this - my blog is my opinion. I will state facts and opinions here. PLEASE do not discuss what you read here with mom or dad. This is my place to vent, to hurt, and to deal. I hold my mother's medical power of attorney, and I understand her wishes as to her living will and her care. I will do what she has asked no matter what anyone else believes. She depends on me to do so which is why she put that power in my hands. THANKS for understanding.
Now......
Wednesday we met with her cancer doctor, Dr. Jones of Jones Cancer Clinic. He was nice, but bossy. She immediately went to the chemo lab and started her first dose. They transferred her from there by ambulance to the hospital to finish off the next 2 days of chemo and to get her pump put in, etc. etc. I stayed with her.
Thursday they scanned to see how far the cancer had spread. It is in her spine. Which is bad, but not as bad as in her brain. Anyway, both are really bad. The prognosis is 1-2 years (at this point, it got updated later as you'll see below). She got her 2nd chemo bag on Thursday night and was scheduled to go to radiation on Friday. I stayed with her.
Friday she went to radiation in the morning and I came on in to work. I was very tired and at 3:00 I went home. I called dad on the way and he was at the hospital with her and said she'd been sleeping since she came back from radiation around 2:30. I took a nap and at 5:30 dad called and said that we needed to get right to the hospital because mom was going to ICU and he needed help getting her stuff out of the room since they would not let her have it in ICU. We rushed down and got her stuff moved and I went down to ICU. They let me see her for just a minute and she was out of it, on full oxygen and still gasping. I was told by the lung doctor that she might not survive, that very few people with her lung function ever come out of ICU or off oxygen at this point. My sister (dad's first daughter) decided to come up to help out. Gods bless Lucy. Chemo and radiation were suspended at this point.
Mark and I went home to rest. Mark got to the hospital at 6:00 on Saturday morning. Mom was up, off full oxygen, and eating breakfast. I got there around 9 and spent the day with her. Lucy arrived and we swapped in and out. Mom went down some as the day went on and her fever spiked. She had aspirational pneumonia from inhaling food into her lungs, but they thought she might get better. I went home to rest, Lucy went to dinner with dad and took the night shift and went home from the hospital when they kicked her out at 10:30.
Sunday morning Lucy and I met at the hospital at 10. Mom was back on full oxygen at that point and had been since 6:00 a.m. when she took a turn for the worse. The day went downhill from there. Sunday night the doctors told us she had aspirated again and they needed to take her off all food and water by mouth as she was unable to control the muscles in her throat properly. We agreed to a feeding tube. They also had to tie her to the bed because she was wild out of her head and pulling on her cords and wouldn't leave her oxygen mask on. We were told she probably would not make it through the night without being intubated and put on a ventilator. After much crying and discussing, Lucy and Mark and I decided that we would let her go peacefully instead of putting her on another machine. We spent the night in the ICU lounge, I slept off and on, Mark and Lucy slept none at all.
Monday morning she was doing better. By Monday afternoon they were able to take her off the mask and untie her hands. I went home at 1:00 Monday to sleep. This morning she was much improved and they are going to start her 3rd and final dose of chemo for this round, and may move her to a room today or tomorrow.
We have a bunch of hurdles here - first, she has the feeding tube. Speech therapy is working with her on getting her throat muscles functioning again and hopefully that will be able to come out. But she can't go home with it. Second, she's got a catheter and will have to get that out. Third, she hasn't walked at all since Friday and she will need some PT to regain mobility.
Finally, with the 3rd dose of chemo going in, we may start this all over again. The only reason we are doing chemo is pain relief. If we can shrink the tumor some with chemo and get it off her spine then perhaps she will get her swallowing reflex back and breathe easier and not be in so much pain. But at this point they have updated her prognosis to 6 months to a year.
She will have no resistance. The pneumonia may come back. We may not be able to take the feeding tube out. The chemo may not work, or may make her sicker. So basically if the chemo doesn't kill her the tumor will before long. It's just a matter of time. And if we can't get her lung function to stabilize then she may die from that since we said no machine. Once a person with her prognosis goes on a ventilator then they don't come off, they are so sedated you never talk to them again, and it's over. We're not doing that to her.
So, there you go.
I'll update as I can. I am doing well and at work today. Trying to get normal in small doses. I am sleeping at home now. I will visit mom as much as I can and make it count, but visits tire her and it's best for her not to have someone with her all the time. We don't need food right now, but thanks for asking :)
I have unsubscribed from most of my yahoo groups and put all other obligations to the side. Work, Mom and Mark are all I can focus on now.
Now......
Wednesday we met with her cancer doctor, Dr. Jones of Jones Cancer Clinic. He was nice, but bossy. She immediately went to the chemo lab and started her first dose. They transferred her from there by ambulance to the hospital to finish off the next 2 days of chemo and to get her pump put in, etc. etc. I stayed with her.
Thursday they scanned to see how far the cancer had spread. It is in her spine. Which is bad, but not as bad as in her brain. Anyway, both are really bad. The prognosis is 1-2 years (at this point, it got updated later as you'll see below). She got her 2nd chemo bag on Thursday night and was scheduled to go to radiation on Friday. I stayed with her.
Friday she went to radiation in the morning and I came on in to work. I was very tired and at 3:00 I went home. I called dad on the way and he was at the hospital with her and said she'd been sleeping since she came back from radiation around 2:30. I took a nap and at 5:30 dad called and said that we needed to get right to the hospital because mom was going to ICU and he needed help getting her stuff out of the room since they would not let her have it in ICU. We rushed down and got her stuff moved and I went down to ICU. They let me see her for just a minute and she was out of it, on full oxygen and still gasping. I was told by the lung doctor that she might not survive, that very few people with her lung function ever come out of ICU or off oxygen at this point. My sister (dad's first daughter) decided to come up to help out. Gods bless Lucy. Chemo and radiation were suspended at this point.
Mark and I went home to rest. Mark got to the hospital at 6:00 on Saturday morning. Mom was up, off full oxygen, and eating breakfast. I got there around 9 and spent the day with her. Lucy arrived and we swapped in and out. Mom went down some as the day went on and her fever spiked. She had aspirational pneumonia from inhaling food into her lungs, but they thought she might get better. I went home to rest, Lucy went to dinner with dad and took the night shift and went home from the hospital when they kicked her out at 10:30.
Sunday morning Lucy and I met at the hospital at 10. Mom was back on full oxygen at that point and had been since 6:00 a.m. when she took a turn for the worse. The day went downhill from there. Sunday night the doctors told us she had aspirated again and they needed to take her off all food and water by mouth as she was unable to control the muscles in her throat properly. We agreed to a feeding tube. They also had to tie her to the bed because she was wild out of her head and pulling on her cords and wouldn't leave her oxygen mask on. We were told she probably would not make it through the night without being intubated and put on a ventilator. After much crying and discussing, Lucy and Mark and I decided that we would let her go peacefully instead of putting her on another machine. We spent the night in the ICU lounge, I slept off and on, Mark and Lucy slept none at all.
Monday morning she was doing better. By Monday afternoon they were able to take her off the mask and untie her hands. I went home at 1:00 Monday to sleep. This morning she was much improved and they are going to start her 3rd and final dose of chemo for this round, and may move her to a room today or tomorrow.
We have a bunch of hurdles here - first, she has the feeding tube. Speech therapy is working with her on getting her throat muscles functioning again and hopefully that will be able to come out. But she can't go home with it. Second, she's got a catheter and will have to get that out. Third, she hasn't walked at all since Friday and she will need some PT to regain mobility.
Finally, with the 3rd dose of chemo going in, we may start this all over again. The only reason we are doing chemo is pain relief. If we can shrink the tumor some with chemo and get it off her spine then perhaps she will get her swallowing reflex back and breathe easier and not be in so much pain. But at this point they have updated her prognosis to 6 months to a year.
She will have no resistance. The pneumonia may come back. We may not be able to take the feeding tube out. The chemo may not work, or may make her sicker. So basically if the chemo doesn't kill her the tumor will before long. It's just a matter of time. And if we can't get her lung function to stabilize then she may die from that since we said no machine. Once a person with her prognosis goes on a ventilator then they don't come off, they are so sedated you never talk to them again, and it's over. We're not doing that to her.
So, there you go.
I'll update as I can. I am doing well and at work today. Trying to get normal in small doses. I am sleeping at home now. I will visit mom as much as I can and make it count, but visits tire her and it's best for her not to have someone with her all the time. We don't need food right now, but thanks for asking :)
I have unsubscribed from most of my yahoo groups and put all other obligations to the side. Work, Mom and Mark are all I can focus on now.
posted by Unknown at 3:13 PM
4 Comments:
{{{Melanie}}}
Many blessings on you and your family, Melanie. I cannot even imagine how tough this is for you. "Small doses of normal" is about all you can hope for at this point. Hang in there. Huge huge hugs for all of you.
Many hugs to you. I walked the "cancer road" with my dad. He got the diagnosis: 6 wks. to live withut chemo or 3 months with chemo. After 2 rounds of chemo, he passed away 3 months later. I have never seen someone have so much grace about dying. I will pray for you and your family.
Mel, I am praying for your Mom. Sending love and support from New Orleans.
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